Click here to go back to the main page.

Saturday, August 2, 2008 8:51 AM CDT

Happy 9th Birthday Katja!

We know you don't need to keep track of such trivial things in Heaven, but we keep counting the days and minutes as we miss you.

We Love You Forever!

Tuesday, July 17, 2007 10:16 PM CDT

Wow, how time flies!

Evan is 3 years old, Dominic is already 4 months old and growing like a weed. He really has a pleasant, smiley personality ( no kidding, all the time smiles with him). We see a lot of Katja in his looks and personality...we see a lot of Katja all around us too, so it's no surprise.

Please keep some of our Caringbridge friends in your prayers. Daniel Wilke had another surgery and will be starting radiation treatments; Riley Butler is steadily improving to get home from his transplant; and always keep Katia Solomon and her family close as we do.

In God's peace!
The Sufkas.

Saturday, April 7, 2007 11:15 AM CDT

Wishing you all a blessed Easter. Remember the gifts given to us and what Easter really represents (though we love the Easter bunny too). This will prove to be a bittersweet holiday celebration as it will likely be the last family holiday spent at the Sufka family farm.

Dominic and Evan are doing well, we're all trying to adjust to having a new baby around. Other than the down turn in the weather, there's nothing new to report right now.

God's blessings on you all.

Wednesday, March 7, 2007 4:33 PM CST

Hello everyone.

Katja's second baby brother has arrived!

Dominic Lee Sufka was born this morning at 9:32.
He is 8 lbs 3 ounces (the smallest of our kids) and 20" long.
He has a lot of hair that is not as dark as Katja's was at birth but darker than Evan's. He is extremely cute (but we're biased of course). We'll post pictures as soon as we can.

Mom, baby and dad are doing well. Evan has yet to meet his new baby brother. We're not sure he really understood the idea of a new baby.

God bless you all as we are blessed again today!

**Update. Evan loves his new baby brother. It'll take some getting used to for him, but we knew it would be OK when he broke into "this little piggy" when he first saw Dominic's feet. Evan can also say Doninic pretty well.

We came home on day 2 instead of staying another long night. It's going to be fun for a while!

Monday, September 18, 2006 10:20 AM CDT

I Carry Your Heart with Me
~ e.e. cummings


I carry your heart with me
(I carry it in my heart)
I am never without it
(anywhere I go you go, my dear; and whatever is done by only me is your doing, my darling)
I fear no fate
(for you are my fate, my sweet)
I want no world
(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

I carry your heart (I carry it in my heart)


Katja, It has been two hard years and six hours since you left us here, but I want you to know that you'll be in my heart, always!

Mom

Wednesday, August 2, 2006 3:24 PM CDT

Happy 7th Birthday baby!!

We know...you're not a baby, but you'll always be our baby.

We love you and miss you terribly.

Thursday, June 29, 2006 5:37 PM CDT

Hi everyone,

We are finally posting some pictures of the garden. There is still finishing work to be done, but at least you can get an idea of how it is turning out.

God's Peace to you all.

Wednesday, June 14, 2006 3:40 PM CDT

Evan celebrated his 2nd Birthday yesterday! He is doing very well. It was so fun to see him open his gifts with so much excitement and wonder. On Katja’s 2nd birthday, she began to wish for a baby brother. I know I’ve told the story many times before, but she asked for, wished for, and prayed for a baby brother EVERY day for 2 years, six months, and 9 days until she finally got the news she would indeed have a baby brother. I wish he knew what a blessing and gift he is and how happy he made Katja two years ago.

We heard from the lighting store last week and we are supposed to get the lighting installed this week, but we haven’t heard from them yet this week (big surprise). It has been almost a year since we won the contest and we still don’t have all the products. Wow, I never thought winning a contest would be such a circus. Anyway, once we have the lighting installed and make a few additions to the garden, we will post pictures.

Thank you to everyone who continues to visit our site, gives us well wishes, and prays for our family. We continue to need all your support. God Bless.

Monday, March 20, 2006 8:04 PM CST

Time marches on. It would have been two years plus since Katja's second transplant. Some of our friends from that time have thankfully celebrated their second second birthdays and are enjoying "normal" lives. Many of them have slipped out of the caringbridge mode so we hope all is well...as they say, no news is good news.

Evan is growing like a weed and learning new words everyday. He's a real parrot now, so its funny to hear him say everything like "please, once" and "mama's name"

Jacqui's new job is a real blessing, finally she is carrying the title she earned with all those student loans, internships and perseverance in the field.

Project city will be starting here again soon with our 80's bathroom needing to go seriously. We've been shopping for tile patterns and fixtures, vanities etc. It'll be dirty but productive.

I'll add a few new pictures, finally, for those of you still checking up on us.

God's blessings on you all.

Monday, January 2, 2006 8:48 PM CST

Happy New Year Everyone!

I managed to put some pictures of the beginning of the yard makeover process (I am using the term MAKEOVER in jest!). The so-called nursery added a rectangle pond in front of the wall, river rock, and three plants. We will get a couple more plants in the spring and they will call that $4,000 worth. I thought I had taken a picture of the garden with the rocks and the pond, but I can not find them on the digital. We also have not heard back from the lighting store, but we did order wall sconces, flood lighting, and a path light for the garden. So technically, the garden is not done. We will have to post more in the spring for anyone still interested in seeing it complete.

I pray for a better year than last and I pray that everyone still dealing with cancer or suffered a loss from cancer will also have a better year in 2006. God's blessing to you all.

Friday, December 2, 2005 3:00 PM CST

The boys are all here!!

August Paul and Cormac James Schaefer were born on Wednesday at about 3:15pm. We visited them about 5 hours after birth. They are beautiful at just under 6lbs each. Mom, dad and the boys are doing well, just getting home as I type. I'm sure it'll be a huge eye opener to them (or eye closer with the sleep deprivation). We'll do what we can to help...plus it'll be fun watching the normal struggles with the added stress of there being two little guys.

God is great!

Friday, November 25, 2005 8:15 AM CST

Happy Thanksgiving all.

We spent the day with Kris and Paul (Kris is not much for traveling now, considering the twins are to be born next week). We cooked like we were feeding 16 instead of 6, but we do like leftovers.

Evan is getting bigger all the time, and he is finally starting to master the English language. After a week at a resort in Brainerd, his new favorite animal/word/and sound is all about bears. We're waiting for some real snow to see Evan's reaction. If he's like his big sister, he'll just want to eat it all!

Hope you had a good holiday. Be careful in the stores this crazy shopping day.

Wednesday, October 26, 2005 4:03 PM CDT

Another successful Volleyballoween!!

This event was held Sunday, October 23rd, in honor of Katja. Last year, our friend and transplant mate Bryce was the recipient of the benefit. This year, 20 teams competed and donated to the cause. The money will be doled out to Child Life at Children's hospital on the 8th floor, Hem-Onc clinic, and the St. Cloud short stay facility. We know all too well how much it takes to maintain sanity and have some fun locked in a small room on isolation. The level of quality of volleyball was astounding...all legs and serious bump set spike action. Everyone seemed to have a great time, for a good cause. We look to help this event grow next year, adding more volleyball teams and hopefully a co-ed indoor soccer tournament. We'll certainly do a better job of informing people.

Not much else to report. Evan continues to grow and learn (new ways to get into everything especially). We are now anxiously awaiting the birth of babies A and B Schaefer - they finally have a completed nursery with an underwater mural.

Thanks to all who help us remember Katja. Peace to everyone sufferring their own terrible losses. And, strength to everyone still in the fight!

Wednesday, September 21, 2005 1:41 PM CDT

We want to give a huge thank you to everyone who helped make Sunday's tribute a success! It was a lot of fun and a very busy time. More than anything, it was very low-stress and we enjoyed just spending time with everyone who came. It may easily become a yearly event celebrating all of our beautiful children.

Thank you to Katja for arranging the most perfect weather you could imagine! Weather reports Sunday morning showed rain by the early afternoon...how wrong they were.

Thank you to Buddy for letting all the kids have rides, many their first ever horseback ride. Thanks to our neighbors Jim, Jen and Emma for supplying the bouncy castle.

After all the fun, unfortunately reality creeps back in that we are still without our perfect girl. But it sure helps to celebrate her memory with others who knew her.

We'll try to add some pictures soon.

God Bless you all.

Friday, September 16, 2005 2:06 PM CDT

Hello everyone.

It's been a while since the last update and there are some interesting changes. The garden project has moved forward, in bits and pieces. The landscape company has been a bit dodgy for some reason. We have ended up doing the lion's share of the work (relaying pavers, building granite semicircles, building and stuccoing a garden wall). Finally, this week the landscapers built the pond wall and levelled the dirt before laying landscape fabric and river rock. It's a huge improvement though not yet done. We still have no plants to speak of, and we're not sure if there will be any from Rosewood. We spoke to the lighting people yesterday and picked out, true to our usual nature, the most expensive landscape lights ever. We scaled back a bit and should have a nice layout with lights - but it will be at least 3 weeks for these to arrive.

We are having a memorial gathering at our house, in the garden if weather permits, on Sunday after 1pm. We will be releasing balloons with messages to Katja and there will be some activities for the kids.

It's hard to believe it's been almost a year since we lost Katja. She is so unforgettable, we hear memories of her all the time. All of her things are still where she left them, or where Evan has moved them. We miss her as much as ever.

Evan is growing like a weed, babbling constantly with lots of new words, including "no" now. He's adjusting to daycare fairly well with the expected 5 minutes of crying at drop-off and pick-up.

That's all for now.

God bless.

Tuesday, August 2, 2005 1:55 PM CDT

Happy Birthday Katja!!

Six years ago today, at 11:20am, we first heard your beautiful voice. We shared tears of joy then, amazed at your perfection. Today, we try to fight back the tears of anguish missing you so much. We try to understand how it is that you're not here to blow out six candles. We try to keep the happy memories to help us get through these tough times. We will celebrate your life in our own ways today. We know that every day in heaven is a celebration, especially with Gate Gamma frying fish for you too.

Your garden plans are coming together, we think you'd approve. The wonderful Rosewood nursery people are working out the details and have told us they will get started as soon as we agree on the plan. Mom and Dad need to put in some sweat and blisters to get the place ready for the update.

Evan is growing so fast, but he is still so much more a baby than you ever were. He babbles constantly, so different from your complete sentences. We are trying not to be too protective, but still fret over every bruise or bug bite. It seems we are having to relearn how to be a "normal" set of parents.

We love you, now and forever.

P.S. Thanks to everyone out there keeping us close in your hearts today, we need it more than you know.

God's Blesings on you all!

Friday, July 22, 2005 10:40 PM CDT

This e-mail came today, I thought it was appropriate to share in memory of Lorraine on the day she was put to rest.

"If tomorrow starts without me, And I'm not there to see,
If the sun should rise and find your eyes all filled with tears for me;

I wish so much you wouldn't cry the way you did today.
While thinking of the many things we didn't get to say.

I know how much you love me, As much as I love you;
And each time that you think of me, I know you'll miss me too;

But when tomorrow starts without me, Please try to understand,
That an angel came and called my name, And took me by the hand.

And said my place was ready in heaven far above,
And that I'd have to leave behind, All those I dearly love.

But as I turned to walk away, A tear fell from my eye,
For all my life, I'd always thought, I didn't want to die.

I had so much to live for, So much left yet to do,
It seemed almost impossible, That I was leaving you.

I thought of all the yesterdays, The good ones and the bad,
I thought of all that we shared, And all the fun we had.

If I could relive yesterday, Just even for a while,
I'd say good-bye and kiss you and maybe see you smile.

But then I fully realized, That this could never be,
For emptiness and memories, would take the place of me.

And when I thought of worldly things, I might miss come tomorrow,
I thought of you, and when I did, My heart was filled with sorrow.

But when I walked through heaven's gates, I felt so much at home.
When God looked down and smiled at me from His great golden throne.

He said, "This is eternity, And all I've promised you."
Today your life on earth is past, but here life starts anew.

"I promise no tomorrow, But today will always last,
and since each day's the same way, There's no longing for the past.

You have been so faithful, So trusting and so true.
Though there were times you did some things, You knew you shouldn't do."

"But you have been forgiven, and now at last you're free.
So won't you come and take my hand, and share my life with me?"

When tomorrow starts without me, don't think we're far apart,
For every time you think of me, I'm right there, in your heart."

Tuesday, July 19, 2005 4:02 PM CDT

Lorraine is at peace and is now dancing and playing with Katja. She went to Heaven around 6:30 a.m. this morning. Her funeral is Friday.

Thank you for your thoughts and prayers.

Sunday, July 17, 2005 3:58 PM CDT

Hello all,

We have been dealing with Katja's great-grandmother, Lorraine’s, failing health the last few weeks. She is now at the end of her battle with cancer. We also lost our neighbor last Saturday and attended her funeral on Tuesday.

We pray for no suffering and for her peace and comfort. We know she is ready to see her beloved son, Dennis, and her precious great granddaughter, Katja. I am sure like many of us who have lost a loved one; she does not fear death. Lorraine has been a prayer warrior for more years than anyone can count. Heaven will be lucky to have such a faithful spirit. But today, we ask for you to pray for her.

Please pray for Lorraine’s peace and for our family’s strength.

God’s blessings

Tuesday, July 5, 2005 9:20 AM CDT

WE WON!!!!

I am overwhelmed. The station said we had 200 votes more than the closest contender did. The votes totaled more than 1000. I was able to tell the listeners that we will be doing a garden in Katja’s memory. The station will contact us later with all the information.

What can I say but THANK YOU, THANK YOU, THANK YOU… a thousand times THANKS.

I wish we could thank each of you individually, but we don’t even know who some of you are. Please let everyone know that you told to vote how thankful we are of his or her support.

Thank you for doing this for Katja, it means so much to us.

Tuesday, June 30, 2005 4:09 PM CDT

***Only ONE day left to vote. I hope all you stalkers are voting too! Thank you for coming to our site.

Okay everyone, we are in! Our yard is now on the contest page. We NEED your vote. Please go to

http://www.lite999.com

click on to the CLICK HERE to vote.
Go four pictures down and make sure you click on the circle above the picture. Our yard (as embarassing as it may be) is the one facing the garage (cream with brick red trim), a red snow blower to the left, and Katja's granite bench to the right. It seems like you can only vote once from each computer (IP address), so do it from home and work! Pass this on to your friends and let's see how connected CaringBridge really is.

Thank you for your support! I hope we win this so we can post pictues of Katja's garden and the tribute to all children who fought cancer.

Saturday, June 25, 2005 5:02 PM CDT

Update: OK, one more try. The radio station is now redoing the voting part, we hope to be included after some pointed emails (that they have chosen to avoid responding to). Maybe they'll get it right. The voting starts on Monday the 27th through Friday, the winner announced July 5th. They don't have rules about voting apparently?

http://www.lite999.com/

In other news, Kris and Paul are moving into their new house this weekend, they did sell their old house after some quick wheeling and dealing. Everything is stable around here but still no job for Jac. We've had to have our air conditioning fixed, now the garage door springs broke, and the sewer line should back up any minute now - the pleasures of home ownership. Evan is non-stop as a growing boy should be.
Thank you for checking on us.
Love, the Sufkas.

Sunday, June 19, 2005 1:03 PM CDT

Update: As our luck would have it. This radio station did not show our yard as one of the entries. Instead, it seems they are showing many new construction and barely landscaped yards. We can not get a response back from the station to how they selected all other entries.


Happy Father's Day!

Our local radio station is having an Extreme Makeover: Yard Edition contest and we submitted an entry. We desperately need a yard makeover after four years of neglect. We submitted a picture of Katja’s garden area that is run over with weeds. We don’t even know where to start. If we win this contest, we would have the means (money) and help from the Rosewood nursery to makeover the space and create a sanctuary in Katja’s memory. Lite 99.9 listeners will vote on which yard deserves the makeover at
http://www.lite999.com/
from June 20th through June 25th.

We are not 100 percent sure all entries will be voted on, but please tell your friends and families to vote for us. Katja’s bench in front of our weed garden will identify our yard. Thank you for your help and support. This feels a little like American Idol. I don’t know if we are the most deserving, but we definitely need the help.

Monday, May 30, 2005 8:01 PM CDT

Hello everyone,

We hope you had a good Memorial Day. We have been keeping busy since our return from Hawaii.

Hawaii is a wonderful place to rejuvenate the soul. It was difficult to leave for Hawaii without Katja and we thought about her constantly while we were there. Some of the hardest times were when people would ask, “so, do you have any children?” Never knowing how to answer the question, knowing that they will ask more questions with each answer. For the most part, I did not feel like sharing our story with strangers, so I would answer, “we have one at home.” It is the truth, but I would still feel bad. But if I said we have two, they would follow with, “boy or girl, what ages, etc.” The questions would continue with, “so, is your daughter in kindergarten?” That is about that time we needed to start her story. When I felt like talking, they would get the whole story (short version of course). One of the last things I wanted is for people to feel sorry for us or be the topic of their dinner conversation. It is a weird thing to experience. It is much more comfortable when the people around you already know most of the story. For those of you we don’t know, it is a lot easier to tell you about her on this web site.

We will share with you the story of spreading Katja’s ashes. On the West Side of Kauai, there is a beach called Polihale Beach. It is 17 miles of beautiful sand and it is very dry on this side of the island. At the end of Polihale Beach are cliffs called Ha`ele`ele. The cliffs are at the beginning of the Na Pali coastline. The Hawaiians believed that the cliffs were the jumping off point for spirits or `unhane leaving this world. There they would leave this life and join their ancestors forever. There is more to the story, but this is where I will end with the history. We walked several miles to the spot we thought was perfect to send Katja home. At sunset on May 4, 2005 (exactly four years after her diagnosis) we sent Katja’s spirit home in the ocean. It was so beautiful and it helped us heal a little more. There are pictures in the photo album to see the area and sunset.

Evan is going to be 1-year old soon, so the focus is on him right now. He is walking and talking a little. Probably the cutest thing he does is mimicking the cat. As soon as he sees the cat he says, “Bow?” Our cat really doesn’t sound like the usual meow. It is a cross between “Mow” and “Bow” so he really has it right.

I am hoping for a call for an interview this week. This is a job I have wished for, prayed for, dreamed of for the past 8 years. Hopefully, I will get the call I have been waiting for and life will again become more ‘normal.’

God's blessings to you all.

* Note: I did not get the interview. Not a big surprise, but very disappointing to say the least. I have one other potential job on the horizon, but I won't hold my breath. I don't think I could buy myself a break.

Tuesday, April 26, 2005 1:04 PM CDT

We will be bringing our sweet Katja to Hawaii very soon. She would have been so happy to go; it was one of her wishes. She always said, "I want a baby brother, I want to go to Hawaii, and I want a puppy!" She got her first wish June 13, 2004. This was her second wish. We only wish she were here to go with us.

I have one of the most important web sites designed for information and answers to questions on childhood cancer to share with all of you. It is also listed on our links below.

http://www.curesearch.org

This web site is very comprehensive and very easy to navigate through. Katja's oncologist is on the board of directors of the Children's Oncology Group. Her group and the Children’s Research Foundation developed this web site. The web site is called CureSearch National Childhood Cancer Foundation. They are also selling a green bracelet with the logo "Reach the Day" and CureSearch on it. All proceeds will go to the Foundation and will help support research for Childhood Cancer.

In my opinion, this is one site you can not afford to pass on if you have any questions on childhood cancer. It almost has too much information! It will always be on the cutting edge of treatment information and also includes current clinical trials on childhood cancers. For those of you looking for information to help friends, family, etc. this is your one stop web site.

I am asking for a small favor. Will you please offer a prayer for me to get a job? I am currently applying for a job in the over saturated field of school counseling. I am sure there are many wonderful counselors out there to hire, so I need a little help. We are becoming more financially strapped every month since I quit my job in January 2004. I do not regret the decision to quit, because I could never get back the time I had with Katja for nine months and the ten and a half months with Evan to date.
Also, please pray for Katja’s Greatgrandma Lorraine, she continues to battle cancer and is still using chemotherapy to maintain her quality of life. Please pray for all of our caringbridge friends who are continuing to battle cancer, are in remission or who have lost their child, parent, brother, sister, aunt, uncle, friend or grandparent. Many web sites are listed in the journal, so take some time to stop by and sign in on their page.

Gods blessing and Maholo (for those of you who understand Hawaiian)!

Tuesday, April 26, 2005 12:34 AM CDT

Hello all,

We will be bringing our sweet Katja to Hawaii very soon. She would have been so happy to go; it was one of her wishes. She always said, "I want a baby brother, I want to go to Hawaii, and I want a puppy!" She got her first wish June 13, 2004. This was her second wish. We only wish she were here to go with us.

I have one of the most important web sites designed for information and answers to questions on childhood cancer to share with all of you. It is also listed on our links below.

http://www.curesearch.org

This web site is very comprehensive and very easy to navigate through. Katja's oncologist is on the board of directors of the Children's Oncology Group. Her group and the Children’s Research Foundation developed this web site. The web site is called CureSearch National Childhood Cancer Foundation. They are also selling a green bracelet with the logo "Reach the Day" and CureSearch on it. All proceeds will go to the Foundation and will help support research for Childhood Cancer.

In my opinion, this is one site you can not afford to pass on if you have any questions on childhood cancer. It almost has too much information! It will always be on the cutting edge of treatment information and also includes current clinical trials on childhood cancers. For those of you looking for information to help friends, family, etc. this is your one stops web site.

I am asking for a small favor. Will you please offer a prayer for me to get a job? I am currently applying for a job in the over saturated field of school counseling. I am sure there are many wonderful counselors out there to hire, so I need a little help. We are becoming more financially strapped every month since I quit my job in January 2004. I do not regret the decision to quit, because I could never get back the time I had with Katja for nine months and the ten and a half months with Evan to date.
Also, please pray for Katja’s Greatgrandma Lorraine, she continues to battle cancer and is still using chemotherapy to maintain her quality of life. Please pray for all of our caringbridge friends who are continuing to battle cancer or who have lost their child. Many web sites are listed in the journal, so take some time to stop by and sign in on their page.

Gods blessing and Maholo (for those of you who understand Hawaiian)!

Tuesday, April 5, 2005 1:58 AM CDT

Dad here.

April 3rd will always live in our memories as one of the worst days ever. That was the day this all began with the terrible nosebleed. I now understand the psychology of an "anniversary reaction." I will never forget the panic and horror of that day; the helplessness that came out of the clear blue into our perfect world. This kind of thing seems to creep in...we've obviously had lots of days worse than April 3, 2001. I didn't consciously realize the significance of the date until tonight. Still, here I sit with the same old feelings that something isn't right, that I need to be more watchful at night. These are the days it seems my bad memories sneak in just when I was forcing them out with good memories.

We've got a small journal started at home to jot down any little thing that comes to mind about Katja, something she said or did. We really need to remember the small things, how could we ever forget the really big things anyway?

Thank you all for caring and remembering our beautiful baby girl in whatever way that you do!

Peace to you all.

Friday, March 18, 2005 11:13 PM CST

It has been six months since you left. I will talk to you at home, not on your web site, I don't have the energy to share those thoughts.

I will share something I copied from another site. I couldn't have said it better myself. Thank you to the author.

Do's and Don'ts

If you are reading in an effort to better understand and support someone you care about who has lost a child, it is hopeful that the following will aid you to become better informed about their needs:

DO: accept the simple fact that it is not possible for you to say things that will make the bereaved parent feel better. This acceptance will enable you to stop when you become tempted to utter cliches that you have heard all of your life that are intended to comfort, but in reality they don't accomplish this. Do know that when you make the initial call, the bereaved parent does not expect you to be able to take their hurt away, or to fully understand the depth of their despair and pain.

DON'T: say "I know how you feel" unless you, yourself, have experienced the loss of a child. Though it is possible for you to empathize with them, the death of their child cannot be compared to the loss of your parents, brother, sister, uncle, aunt, grandfather, grandmother or dog. This is not to say you haven't experienced pain with these losses, but they are different losses. Bereaved parents have trouble accepting "I know how you feel" from anyone other than another bereaved parent.

DO: feel free to touch them, to hug and cry with them if these expressions are appropriate to your relationship with the parent. Tell them that you care about their pain and that you are sorry their child died. A simple hug can say more than a thousand words.

DON'T: impose your personal religious beliefs, nor offer as solace "this was God's will". You should be careful how you represent God, His wishes and plans when dealing with the bereaved. Some parents accept the loss of their child as being the will of God. This belief is right for them. It comforts and enables them to better cope with their loss. Other bereaved parents, even though they have had faith over the years that has been a source of strength, may now have trouble with their relationship with God. They might be in the process of reevaluation how they feel about some aspects of their religious beliefs. They might be troubled now because they did have such a strong faith and relied on God to keep their loved ones safe. They might be deeply angry with God for having failed them, for allowing this death to happen. It might take a long time to work through this anger to sort out their emotions. Parents need to be able to admit and express their anger at God if it is there, without being judged. They need the time and freedom to decide what they now believe. What you believe is not important. How they feel and their right to feel that way is important.

DO: tell them that you don't understand the WHY of it either. Those "Why's" especially the unanswerable ones, are difficult for many parents to deal with. They need to be able to ask WHY, and to have time to accept there might never be an answer.

DON'T: think you are complimenting them by telling them "how well" they're doing a few months down the road. They're not doing well. Their child has died and inside they feel they are dying too. You would feel the same if it were your child. You may feel more comfortable dealing with them if they're "doing well", but trying to rush them through the grief process doesn't work and it angers them to sense that you don't understand their pain, the length and depth of it, and are expecting more from them then they're capable of early in their grief.

DO: allow the grieving parent to express their feelings, if they have that need. The pain involved in letting go, the anger, frustration and guilt are all a part of the normal grieving process, leaving them empty and without purpose for a long time. Allow them to tell you how they feel. Don't tell them how you think they should feel. They just need you to listen. You aren't expected to be able to take away the hurt or to have all the answers. Talking and crying about the loss are the first steps toward recovery for some. After they have cried and talked about their loss enough, they are then free to go on to the next step in the recovery process. Your willingness to listen helps them, and isn't that your ultimate goal? Encourage them to be patient with themselves when they grow discouraged with their slow progress.

DON'T: impose "shoulds" or "should nots". There are no rules and regulations, nor are there right and wrong ways to grieve. There is your way and my way, and though they may be totally different, neither is wrong. Society, over the years has tried to impose its own rules, rules often drawn to make it easier for society to cope with the threat of someone else's loss. You may think you know exactly how you would react if your child should die, but you would be amazed to find that the rules that once seemed so appropriate no longer apply. There are as many ways of expressing grief as there are people expressing it..

DON'T: impose time limits on their grief. "Isn't it time you were getting over this and going on with your life" can be one of the most painful questions a grieving person can hear. Depending upon the relationship, it takes not weeks and months to adjust, but sometimes years. You need to know and understand this. "It may threaten you to learn that the hurt goes on for such a long time, but you offend the bereaved even more when you insinuate they have a choice. The truth of the matter is, no one "gets over" the loss of a child. They try to adjust and live with the loss. Parents who go through the trauma of having a child die do not come through the experience without having changed in many ways. A part of them died when their child died, and it might take years for them to recognize some of these changes. Their new reactions to old situations take them totally by surprise. Each person has his own time frame for recovery. Allow them that freedom.

DO: mention their child by name. It is comforting for bereaved parents to know that others remember their child, too. Some people avoid mentioning the child's name for fear it will remind the parent of their loss. For a long time the parents can think of nothing but their loss, so that shouldn't be a worry for you. If tears come, then they needed to cry, and the tears may be tears of gratitude that you have given them the opportunity to share their child with you. If you have a good memory of their child, share it. It will make their day. A parent's greatest fear is that no one will remember their child, and if the child's name is never mentioned, or the subject avoided, it is a natural conclusion. Why should you , whose children are alive, have the right to reminisce about the past, while those, whose child is dead, are denied that right? Memories are all that parents have left and those memories did not die with their child.

DON'T: turn away if you unexpectedly come upon the parents. Most parents are aware you have chosen not to "see" them. Can you imagine going to the grocery store, as painful as that already is, and having several people pretend they don't see you? Can you imagine how distressing this would be? Why not, instead, approach them openly, tell them that you have been thinking of them and ask them how they are doing. Acknowledge their loss, don't pretend it didn't happen.

DON'T: try to find something positive about their child's death. If there is anything positive about the death, the parents will have to find it in their own time. If you are tempted to point out such things as "closer family ties," or their child is "in a better place", or "it will make the marriage stronger", don't do it. Parents hear this time and time again. It doesn't help, and instead may cause bitterness. Many marriages do not make it through the loss of a child and closer family ties are not always the outcome.

DON'T: remind them that they should be grateful they have other children. Children are not interchangeable. Each has his own special place, and no one child can fill the void left by another's death. You need to be aware that for a while, the parents sometimes lose their ability to nurture their surviving children. You can help by giving these children a little extra attention until life at home is on a more even keel. Siblings often feel very much alone and bewildered when the structure of their family has fallen apart.

DO: know that it is difficult for the newly bereaved to reach out to you for help. Grieving is emotionally and physically draining. Just getting through the day might take more energy then they have. Let the family know you are available to be with them if it would be comforting. Conversely, when you invite the parents over, be sure to give a specific date, instead of leaving the initiative up to them. Being at ease in large crowds may take time, so plan only small gatherings, leaving them free to leave whenever the moment is right for them. If the first invitation is refused, offer another at a specific date later on. Being at parties and with other people is not going to take their mind off their loss and make them have a good time. The thought of it may make them feel guilty and be an affront to them.

DON'T: suggest to younger parents "but you can have other children". They may or may not be ale to have another child, but it is not appropriate for you offer comfort with the thought of another child. You see, they wanted this child.

DO: know that there will be certain days that are more painful for parents, such as birth and death dates, as well as holidays. Anticipation of these special days causes periods of depression and anxiety a long time before and the actual date. These special family oriented times are an opportunity for you to be in touch to give some support and attention. Let them know you are aware and that you care.

DO: know that it is not abnormal for some parents to spend a good deal of time at the cemetery. How often they visit the cemetery or whether they go at all, has no bearing on the intensity of their grief or the length of it. Each person handles this in their own distinct way. Don't make it a problem for them.

DO: know that for some parents having many pictures of their child around the home is comfort. For others, photographs on display are to painful. You may find it makes you feel uncomfortable having the photographs around, but for you to suggest they should be put away pains the parent deeply. There doesn't seem to be a middle ground on this subject. Each individual's need is valid and should be recognized.

DON'T: rush in and remove their child's belongings, or change their room unless the parent specifically asks you to. It takes some parents many months before they are ready to change anything. It is their right to decide what they want to keep and what they would like to share with others. You may feel they will recover faster if they face this sad task immediately, but that is not necessarily the case. Leave them alone until the time is right for them, and then help them only if they ask you to. Don't make it an issue. They have enough problems.

DO: reassure the parents they did everything they could for their child, both emotionally and medically. Many feel failure and guilt because they weren't able to keep their child from harm. Small omissions or commissions loom large. It is important that you not add to these feelings of guilt by suggesting that the care given the child either at home, at the hospital or wherever, was inadequate. This only adds to their burden.

DO: show your concern, do be there over the months to come on a regular basis. Allow them to tell you how they feel, and listen when they tell you. Don't tell them what you think they should be feeling. Leave them free to express anger and guilt. If you know a certain time of day is particularly difficult, do try to plan your visits to coincide with that time. Do be patient. Allow them to grieve in their own way and at their own pace. Avoid judgments and try to be accepting of the different ways in which grief can be manifested. Remember, it is better to touch and cry than to stand back and offer cliches. When all is said and done, you will be remembered not only for having been there when the need was great, but also for having known the right thing to say and do.

By Mary Cleckley, Atlanta, Ga Copyright 1981

Thursday, March 3, 2005 2:09 PM CST

We were asked to speak at our churches Lenten service last night, so we wanted to post an excerpt of what we spoke about for those of you who could not make it.

We began by describing an Easter card’s contents and what we got from the passage.



"THE MAGIC OF THREE DAYS"
It was a beautiful spring day, and a sense of peace stayed with me as I left the cathedral on Easter Monday morning. I paused for a moment on top of the steps leading to the avenue, now crowded with people rushing to their jobs. Sitting in her usual place inside a small archway was the old flower lady. At her feet, corsages and boutonnieres were parading on top of a spread-open newspaper. The flower lady was smiling, her wrinkled old face alive with some inner joy. I started down the stairs--then on an impulse, turned and picked out a flower.
As I put it in my lapel, I said, "You look happy."
"Why not?' she answered. "Everything is good."
She was dressed so shabbily and seemed so very old that her reply startled me. "You've been sitting here for many years now, haven't you? And always smiling. You wear your troubles well."
"You can't reach my age and not have troubles," she replied. "Only it's like Jesus and Good Friday...." She paused for a moment.
"Yes?" I prompted.
"Well, when Jesus was crucified on Good Friday, that was the worst day for the whole world. When I get troubles I remember that, and then I think of what happened only three days later – Easter and our Lord rose from the dead. So when things go wrong, I've learned to wait 3 days and somehow everything gets much better."
She smiled good-bye, but her words still follow me whenever I think I have troubles... "Give God a chance to help...wait three days."
--by Patt Barnes.

This little passage made our world more clear. Whenever Katja became very ill or got a high temperature it always seemed to take three days for Katja to get past the new complications that came up during treatment. We believed more than ever that Jesus was present.

One time during treatment, Katja was under two years old; she was sitting on my lap while I rocked her. Out of the blue, she started smiling. I asked her what she was smiling about and she said, “Jesus.” I asked her where He was, and she pointed to the bathroom area and said, “over there, isn’t He cute!” I said, “yes, He is.” She often talked about the angels she would see watching over her during treatment. When her great uncle, Herbie, died from Cancer at the end of Katja’s first chemotherapy treatment, she called Herbie her guardian angel. All of these thoughts were so pure coming from Katja. We really wanted to believe everything was true.

When Katja relapsed for the last time, six months after her second transplant, we knew there were no more miracles for her cure. The day everything in her body started shutting down, the doctor said she would be surprised if Katja made it 24 hours. We knew better, we knew there would be peace on the third day.

There are a great many lessons that we learned through our journey with cancer. We know what it is to be shaken to your core by bad news. We know the pain of watching a treasured loved one suffer through treatment. We have begun to understand the pain of real loss.

Somehow, there are positive lessons too. We learned how to truly hold on to hope through the darkest times. Times when, suddenly, a 10 percent chance sounds like good odds. These are the moments when we learned to respect every minute and cherish every memory. We learned from our brave daughter what it is to suffer without complaining and to make the best of the gifts we’ve been given.

Our healing has only begun; it seems it will be a very slow process. But we have help.

Our beautiful son Evan (whose name literally means “gift from God”) is helping. He’s given us a good reason to get out of bed every day; he’s given us plenty of reasons to smile.

Katja is helping. On our worst day, Katja’s death, she helped us sleep. Then we were given the strength to make funeral arrangements. Finally, we planned the most uplifting and joyous celebration of her life.

And we know Jesus is helping. We feel his presence whenever we remember Katja’s laughter or see Evan smiling. Through the most difficult time in our life, we felt sure that there is a Heaven, that Jesus was with Katja in her life and death, and that Angels really do exist.


This is dedicated to our Angel Katja. It is also dedicated to our newest Angels, Ed and my dear Aunt Barbara that went to Heaven Monday after her courageous battle with cancer. May they rest in peace. We would also like to give our deepest sympathy to Pastor Elizabeth who also lost her mother to cancer Monday. May your parents be laid to rest Friday and forever be in peace.

Tuesday, February 22, 2005 2:52 PM CST

Yesterday morning or dear neighbor and friend, Ed, died. It is another story of a survivor. Ed had a Kidney transplant years ago, which began a fight for his life. When we moved to our home three years ago, Ed and Carrie embraced us and ‘adopted’ Katja as their grandchild. Katja lovingly called them Grandma Carrie and Grandpa Ed. Ed took care of our yard when we were away and would surprise us by planting flowers in front of our house and planting tomato plants in Katja’s garden. Although Katja’s garden is a square space filled with dirt, the tomatoes flourished. Katja loved to water the plants and pick them for her grandmothers when they were ripe. Katja also would go over to Ed and Carrie’s house to pick flowers; she loved flowers. Ed loved flowers too. He dreamed that Katja’s garden would one day be filled with flowers. Although our vision of the garden is different from Ed’s, it is none the less beautiful. We can only hope that Ed is now walking in a field of Marigolds. We love you Ed and will miss you. Please take care of our beautiful daughter. I hope she welcomed you at Heaven’s door.

Thank you, everyone, for contining to read Katja's web site and especially for leaving messages in our guestbook.

Monday, February 7, 2005 3:44 PM CST

Well that was a bad week. Boy, I didn't expect so many people to read WAY too much into what I wrote last time, but I am glad I helped those who have also taken a similar journey find a voice. I am positive that the less than one percent of people I was referring to in the last entry do not even read the site. So, if you read this site and took it personally, I am sorry.

The downward spiral in my usual positive mood started when I found out Priscilla had relapsed after one-year post transplant. The flood of emotions was overwhelming. Then Katja's great grandmother got an infection that I was very worried would become septic. I worry so much about her chemotherapy treatment and all the awful side affects. On top of it all, my friend’s father died of brain cancer. Too much cancer continues to surround our life. It didn't feel like there was anyone who wanted to hear about our reality.

Three days from now would have been Katja’s one-year 2nd birthday. I wish we were celebrating her cure. Many of our transplant friends are celebrating their one-year milestone except Aaron and Cole; may you rest in peace. It is still difficult to explain what life is like without our precious daughter. I long to hear her voice and infectious laugh again.

Evan is visiting Kat’s toy room every day now (he has mastered the army crawl) and plays with her dolls. He still beams every time he sees her picture; he really loves his big sister. He is now saying “Mama” and “Baba” so I imagine he will be a talker like Katja. He did get one very big Chiclets tooth on the top and the other one is right at the surface. He basically had one bad night cutting that big tooth. We are still not used to having such a healthy active boy. It is just like we are new parents for the first time again. I continue to be in awe of him and all the children we know.

We had a busy weekend with friends, which was a very welcomed change. Aaron and I are focusing on our upcoming trip to Hawaii. For everyone who knows the story, it is Katja’s trip. She would be so excited to go and I am sure she will be with us. We will be building a sandcastle just for her. We also plan to send some of her ashes to swim in the ocean and play with the dolphins; we feel this is fitting because she was conceived in Hawaii after all.

Thank you everyone for continuing to read her site and letting us know you are there, it really means a lot to us. I will try to update at least monthly.

God’s blessings

* New picture in the gallory

Tuesday, January 25, 2005 1:01 PM CST

I have been thinking about whether to continue with this web site or not and I seems like it is time to stop updating. This web site was created to keep everyone informed of Katja’s progress or lack of progress. We hoped it would also be a site to receive support, encouragement, and advice etc. It seems that most people are “there” when things are going wrong. When things are going well (Believe me, there is no such thing when someone is battling cancer. You are constantly stressed and anxious about every trip to clinic, every lab value, every cold, etc. Every time the doctors do a biopsy, you can hardly breath waiting for the results…) it seems that most people go on with their lives and assume everything is Okay. The same thing seems to be true when the battle is over. Everyone assumes you are doing Okay or as well as can be expected, so you have moved on with your life. At times, it is disheartening for me to check the guest book daily and see no entries. There are the faithful few who update on a regular basis and we really appreciate their support and kind words. Since it appears the interest is over and I feel we put more into this then we get out of it, it is time to sign off. I will assume that if anyone wants to know how we are doing, they will call. Our phone number has not changed in nine years, yet the phone never rings. I write this so that others know that people do feel alone when the human relationship is absent (really talking to someone or seeing someone in person). Web sites and e-mail seems to give us an excuse to not call or make time to visit someone in need or to keep real friendships going. I am as guilty as the next person is. I try to put notes on other caringbridge web sites, but what I should be doing is calling, visiting, or sending a real note to let them know we are thinking of them.

This journey has changed how I see others, how much I appreciate our true friends, and family and even strangers. I realize how important relationships are and that sometimes you need to decide if you are putting more into a relationship than you are getting out. During this journey, we have experienced more loss than the loss of our daughter and we also gained more than we could imagine. Once again, I will put a poem that speaks about being there…

IT'S THE THOUGHT THAT COUNTS

Often in times of trouble
we don't know what to say,
So we choose to say nothing,
and sometimes run away.
When friends are really hurting,
we don't know what to do,
So we offer weak excuses
or say we're hurting too.

It really doesn't matter
what kind of gift we bring;
we only need to be there
if we don't bring a thing.

It truly is amazing
what a hug can do,
When heartache numbs the senses,
and friends depend on you.

There's comfort just in knowing
that you are not alone,
When tears are overflowing,
and hearts are cold as stone.

It's the loving prayers of others
that balance our accounts,
For when we measure love,
it's still the thought that counts.

By~ Clay Harrison

I feel like I need to put a footnote on the entry above. Not because I feel I need to defend what I wrote, because I was just expressing my feelings and I have a right to my feelings. What I was trying to relay is the feeling of isolation we have had through this entire journey. There were times, probably a few weeks total, that Katja needed to be isolated from people for her safety. The isolation seemed to continue, not by our choice, but by the assumptions others made. It has been over four months since Katja has passed and yet I still feel isolated. In a way I feel like I am enabling people to stay away by communicating through a computer.

In no way was this message intended for anyone who has never met us in person. Yet, it seems like I hit a cord in those strangers. I do not expect anyone who has not walked in my shoes to understand the isolation I am referring to, nor would I expect anyone to pass judgement. Unless you can hear my tone of voice, see my facial expressions, or hear what I am saying, there is no way you can really know how I am feeling. That is what I mean by the absence of the human element. I think Stacy from PA got what I was trying to say. She was looking for a way to support her friend by searching web sites and is really trying hard to be a good friend. I believe it is the “trying” that is most important. I can only hope that others will learn from this web site.

Friday, December 31, 2004 4:03 PM CST

Wishing everyone a Happy New Year. We hope this new year brings good health and happiness to all our family and friends, especially our caringbridge friends still fighting the big battles.

Saturday, December 25, 2004 6:23 PM CST

Merry Christmas everyone!

* See new and old photos in the gallery.

Monday, December 13, 2004 12:43 AM CST

If we could have three wishes this Christmas;
it is for you to have Peace, Health, and Happiness.

Merry Christmas everyone!
The Sufka Family

Wednesday, November 17, 2004 11:57 AM CST

Hello everyone,
We have received over three hundred cards and passages with such deep meaning over the past few months. We received one recently from Sister Timothy Kirby from the College of St. Scholastica that really spoke to me and I would like to share it you all of you. The passage eloquently says what I have not been able to put in words; what I believe Katja would say.

TOGETHERNESS

Death is nothing at all. I have only slipped away into the next room. Whatever we were to each other, that we are still.

Call me by my old familiar name; speak to me in the easy way you always used to. Laugh as we always laughed at the little jokes we enjoyed together.

Play, smile, think of me, pray for me. Let my name be the household word it always was. Let it be spoken without effort.

Life means all that it ever meant. It is the same as is ever was; there is absolutely unbroken continuity.

Why should I be out of your mind because I am out of your sight?

I am waiting for you, for an interval, somewhere very near just around the corner. All is well. Nothing is past; nothing is lost.

One brief moment and all will be as it was before – only better, infinitely happier and forever – we will all be together with Christ.

Carmelite Monastery


We continue to try and figure out life without our wonderful daughter. Evan is doing what he can to keep us busy. He cut two bottom teeth a day before his five month birthday and he is sooo big. He is such a precious gift, just as Katja was. Katja will watch him grow from a distance, and she will always be there to protect him.

With Thanksgiving just a week away, we can reflect on what we are thankful for. The list is very long. We are very thankful for the past three and a half years we had with Katja, especially the past year and a half. We are so very thankful that she was here to welcome her baby brother into this world and spent three perfect months with him. I could type forever the things we are thankful for, but if you read her journal entries again, you will get a small reminder of our thanks. Thank you for continuing to keep Katja and our family in your prayers. For being there for us and keeping us close.

Thank you Jesus for being with Katja in life and bringing her home to heaven.

Saturday, November 6, 2004 4:00 PM CST

Some new or not so new thoughts... I received an e-mail from another parent with a child battling cancer and she asked if I had any advice. At first nothing came to mind that I haven't already said, but then I thought that I do have some more advice. One thought I had after Katja had died is “do I have any regrets?” I can honestly say I do not. When it came to Katja’s care and her happiness, we did everything we could. We let Katja spend time with other family members and friends while we took needed breaks from all the medical treatment. That meant letting go of the daily control of watching over all medical decisions and medication administration. It also meant trusting others that didn’t live the care 24-7. We gave others time to be with Katja that they would not have had if we chose to do it all. I am so happy that her grandmothers, aunts and uncles, cousins, and great-grandparents had special time with Katja and have their own memories. We lived everyday as if there were no tomorrow for Katja. This is not to say that parents who do not leave their child’s’ side should feel regret; that is far from the truth. We believe this is what was best for Katja. It is how she lived her life when she was well and changing it felt wrong. The other thing we tried to do is make her life “normal.” We talked about hopes and dreams and made plans for the future. We registered her for Kindergarten and attended the required open house, even though we knew she would never attend. She was so excited about school and being in Kindergarten. She was so happy to get her official nametag from her classroom. We also tried to be as consistent with our parenting as we would have been if she were healthy. We gave in on a few things though, like bedtime at 11:00 p.m. instead of 8:00 p.m. Or letting her watch “Emergency Vet” and “ER” even though they are quite graphic. She really wanted to be a doctor (or a pilot). Wednesday before things really fell apart. We played one last game of Go Fish at 11:00 p.m. Katja could hardly keep her eyes open and she was laying on her side, but she would not go to bed without finishing that game of Go Fish. What a special memory. What if we would have said “no, its time to go to bed.” No regrets.

I am sure there are people reading this who have regrets, even with Katja. All I can say to them is it is never too late to make different choices. Do you have any regrets right now? Do something about it and start today.

Tuesday, October 26, 2004 1:30 PM CDT

As time passes, it seems that some things are getting better and some things are much more difficult. What has become blazingly obvious is that life is made up of a series of routines. The routine we miss most is bedtime. We miss reading Katja stories and saying ‘I Love You.’ Then Katja saying, “tell me what your dream is in the morning,” and “don’t let the bedbugs bite.” One time Katja asked, “are there really bed bugs?” We never gave just a yes or no answer, so I went on to tell her that when her great grandparents were young, the old beds had microscopic bugs that would bit them. But she did not have to worry about bed bugs at home, because we bought her a bed that is anti-microbial, so the bugs can’t live in her mattress. She said okay and went to bed. Katja had such a love of words and language. She used words like “epiphany” and “paraphernalia” in the right context in her daily conversations, just to keep the adults around her entertained.

One thing that we want people to do is be in awe of your children. Watch them, listen to them, and realize their gifts. Katja gave us a wonderful gift of showing how to laugh, sing, dance, and tell jokes no matter what life throws your way. She showed us more about resiliency and being a survivor than any book or college professor could ever teach us. If people ask us if we are okay or see us and think we are okay, it is because in some way we are. We are practicing the gift that Katja taught us in our life without her. Sometimes we have to fake it and if you fake something long enough, it becomes real. We owe her that much and want to honor her memory.

We think about Katja constantly. We are reminded of her everywhere. We think of her when shopping at the grocery store, listening to music, and watching commercials on TV. These reminders help us remember stories that we share with friends and family. This helps us through our day and gives us time to laugh, cry, and smile. She will be in our hearts always and forever.


* A picture of Katja's memorial bench is now on the photo page. Thank you everyone for your generous donations. We will also be buying a stone paver at Give Kids the World and the Ronald McDonald House in Katja’s memory.

Tuesday, October 12, 2004 4:39 PM CDT

Memories of Katja:

We were there for
Her first words
Her first steps
Her best dances
Her best songs

We heard her say
No Gammy, No Daddy
You talk ‘em
Tell what your dream is in the morning
I love you

We watched her
Struggle against the unbeatable
Survive the unsurvivable
Touch every person she encountered
Do it all with simple grace and dignity

We felt every bit of
Her chemo
Her radiation
Her remission
Her relapses

We watched her
Grow from a strong baby, to a strong girl
Eat, and then not eat
Walk, fall,
And then walk again

We learned from her
How to be beautiful bald (or with hair)
How to live like it counts
How to love fully and deeply
How to be truly free

We will always remember
Her gentleness
Her concern for others
Her incredible intellect
Her beautiful soul that proved too big for her body

We were there for
Her first breath
Her last breath

We will always love her.

Thursday, September 30, 2004 8:46 PM CDT

It is difficult to think of what to write anymore. It is difficult when talking to people to describe what we are feeling. After almost two weeks, it is hard to believe our perfect daughter is gone. I used the word “perfect” very seldom when talking to Katja. I never wanted her to think she ‘needed’ to be perfect, but she was. Everything she did amazed us. Everything she said was ingenious. I often thought she must be one of the Wonders, Gods own creation. I can’t imagine us creating such an extraordinary person. Her potential was endless and we will never know what might have been.

She must be one of the most important angels in heaven. Why else would she need to go so soon. She let the whole family know her presence within a day of her passing. That has given us some comfort. There is comfort in knowing she is here when we need her most. I only wish I could hear her call “Mom” or touch her again. I miss her saying, “I love you” and “tell me what your dream is in the morning.” There are so many things we miss. We are reminded of her everywhere. I read a book of verses about angels and I thought I would share one that really touched my heart.

A friendly voice in the dark of night,
The tentative rays of morning light,
A host of butterflies high in flight,
A rainbow extending far out of sight—
All these miracles tell me this:
Angels really do exist.

Saturday, September 25, 2004 0:47 AM CDT

In just a few hours, it will be one whole week without our precious Katja. My, what a busy week it has been, it has just flown by. It still seems impossible that she is gone. We keep waiting for her to come home from a weekend with Grammy, or for her familiar call from the bathroom "I'm done." Sometimes, it is like her whole time with us was a dream that we all shared. But, that is most likely our hearts trying to forget the pain of losing her.

Where and how do we begin to thank everyone for everything that has been done for us and Katja this last week. The funeral director did some very excellent work helping us to finalize our weighty decisions; that took away a ton of anxiety for us both. Pastor Larry and our musicians helped us to make Katja's memorial very memorable, beautiful, and perfectly fitting with our wishes and what Katja would have loved best. We heard over and over again how special and moving the entire event really was. Some people were almost ashamed to tell us that they really enjoyed themselves or almost had fun... Believe me, we are not offended by this; that was our whole intent.

Then, how do we begin to thank people for their marvelous generosity in this time of amazing heartbreak. We will be deciding on charitable donations in Katja's honor/memory and will also be establishing a memorial site in our garden. We hope to find a fitting granite garden bench to compliment our new angel statue and the plants we will probably get in the Spring. It has just been overwhelming, it is unbelievable that a 5 year old girl could touch so many lives. But, is anything unbelievable when it comes to our girl? Her gift was bringing people together (and entertaining people as well).

We miss her so much.
Thank you for your continued concern.

We ask that you pour your energy, powerful prayers, and further donations into the charities we've listed (look back in our journal history). Let's help Katia Solomon reach her "light the night" goal!!

God's blessings on you all.

Tuesday, September 21, 2004 10:59 PM CDT

Katja,

Today we all gathered at the funeral home to continue our goodbyes to you. There were so many people there, Mom and Dad's arms hurt from all the hugging. Everyone wondered how we were staying so strong but it's really no secret. We feel you with us all the time, making everything seem almost easy. There was more time for telling our favorite stories and laughter, always the laughter follows you. You were so beautiful Princess, even in stillness. We hope you approve of our choices of the toys we sent with you. Tomorrow, we will celebrate your life once again. The music will ring out for you! We have been honored to be your parents!

We Love you and miss you
Mom and Dad (and Evan)

Sunday, September 19, 2004 9:27 PM CDT

Visitation Time and Place:

Tuesday, September 21, 2004
5:00 to 8:00 p.m.
Dingmann Chapel
326 2nd Avenue S
Sauk Rapids, MN 56379
320-251-1454

Funeral Time and Place:

Wednesday, September 22, 2004
5:00 p.m.
Living Waters Luteran Church
1911 4th Avenue North
Sauk Rapids, MN 56379
320-255-1135

We would prefer memorials in lieu of plants or flowers.

Memorial idea list:

Living Waters Lutheran – Katja Sufka Fund
1911 4th Avenue North
Sauk Rapids, MN 56379
Tel: 320-255-1135
Living Waters Webpage

Ronald McDonald House
621 Oak Street SE
Minneapolis, MN 55414
U.S.A.
Tel: 612-331-5752 Call to make tribute cards
Fax: 612-331-1255
e-mail: info@rmhtwincities.org
Webpage

Give Kids the World

Make-a-Wish Foundation of Minnesota
5155 East River Road, Suite 413
Minneapolis, MN 55421
Tel: 763-571-9474
Fax: 763-571-2592
e-mail info@wishmn.org

The Leukemia Lymphoma Society, MN Chapter
5217 Wayzata BLVD
St. Louis Park, MN 55416
Tel: 952-545-3309
Fax: 952-545-5926

CaringBridge
3440 Federal Dr, Suite 100
Eagan, MN 55122
CaringBridge donations

Mail a check/money order to:
The Katia Solomon Fund, Inc.
PO BOX 22375
Tampa, FL 33622
Katia Solomon Fund

Giving to Children’s Hospital and Clinics
Cancer Kids Fund
Send your gift to Cancer Kids Fund
2525 Chicago Ave S., Suite 4150
Minneapolis, MN 55104
Please be sure to note that your gift is for the Cancer Kids Programs.
Tel: 612-813-6417
Children's Cancer Kids Fund

Sunday, September 19, 2004 4:30 AM CDT

It has been one day since you took your last breath.

We will be making funeral arrangements this afternoon. We will update the page with the information when it is available.

Saturday, September 18, 2004 5:32 AM CDT

Katja left us peacefully at about 4:30 today. She let mom and dad cuddle with her for several hours, we all fell asleep in her bed. As her time neared, she waited until we could all be together at her bedside. She is in no more pain after such a long, hard struggle. She is flying free tonight. We are here celebrating her life and remembering our favorite "Katja-isms" and stories. We all already miss her but are joyful that she is pain free.
Thank you all for your prayers.

Friday, September 17, 2004 5:51 PM CDT

Katja, our ever strong willed girl, continues to fight on. We have had some very precious moments with her, some scary ones too in the last hours. After a trip to the hospital for blood and platelets, she is home safe again. Those of us who helped her come into this world will be here to help her into the next. She is comfortable and we will keep her that way as best we can.

Thursday, September 16, 2004 6:18 PM CDT

Katja's condition has rapidly worsened today. Her liver is very enlarged, she is more bloated, and it seems like her kidneys are shutting down. We are agonizing over the decision to bring her to the hospital or to stay at home and keep her comfortable here, surrounded by her closest family and her most favorite belongings. She is comfortable now but is fading in and out of sleep. She is listening to all we say but talking very little.

Pray for peace and comfort for Katja and strength for us all

Thursday, September 16, 2004 1:38 PM CDT

I guess the glowing journal entry yesterday was a reflection of our mood having had a good productive day with Children's and St Cloud Centracare's help. In reality, things are still somewhere between bad and horrible. Katja has been having some small nosebleeds (usually from scratching or picking) and can't/won't remember not to dig in her nose. Her hemoglobin was 6.8, only up to 8.8 after a transfusion last night. She is not holding her platelets. And, she is getting fluid overloaded. She looks like she went 5 rounds with Rocky right now, eyes swollen and dark. She needs Albumin today to get the fluid back into her vessels instead of her tissues. She's actually dehydrated in her veins, isn't peeing enough etc. We think her pain is mostly contolled with the dilaudid, breakthrough pain seems better with the magic button. But, the worst part is having her doing nothing, not smiling, and only talking to voice her demands. She is breathing rapidly and in shallow breaths, her heart is racing, but somehow, her blood pressure has been too low now. She has no motivation to do anything, nothing is fun to her and she is easily frustrated. Even TV is more annoying than entertaining right now.

For us, the worst part is not knowing how/when this will end. How long can we all go on like this? Will she have any more "up" times to come? No on can give us this information. For the first time, we are all truly in God's hands. We have trusted God's intervention through ourselves and doctors up to now. Still, the doctors and nurses are providing mainly support/comfort care at this point.

Pray for our peace and Katja's comfort. We are still going to try the Vitamin A but she is less and less willing to take anything by mouth. Pray that she won't bleed.

Wednesday, September 15, 2004 4:37 PM CDT

We are having a bit of relief. Katja was FINALLY put on a drip of Dilaudid yesterday when we went to visit her oncologist at Childrens. Within minutes of the first dose, she was a completely different child, back to her old silly self. We are feeling a bit of resentment that the doctors at Fairview haven’t checked their egos at the door to do what is best for patients, especially at this stage. Seeing now how comfortable Katja is with a low dose drip and after watching for days her become increasingly agitated makes it hard to understand the rationale of “trying” the other medication when we asked for Dilaudid in the first place. We are so thankful for the care and compassion that Childrens Hospital is giving us and has always had in Katja’s care.

Katja’s doctor, Dr. O’Leary, came up with one other option for treatment. It is a protocol for Neuroblastoma, but she has tried it in brain tumors (Ependymoma) with success. It has never been used for AML. There has always been a method to Dr. O’Leary’s madness and we trust her implicitly. Katja is on vitamin A (Cis Retin-A) and Vioxx. The combination forces immature cells to mature. We are hoping that her blasts (immature cells) mature and die. This treatment is also less toxic than conventional therapy. We are going to try this for 14 days and see if her blast count decreases. If it works, this will also hopefully allow Katja’s good cells to recover. We are afraid that if we do the other maintenance chemotherapy before her cells have a chance to recover, they will never come back. This would make her transfusion dependent and likely very sick. It is worth a shot. Katja was also prescribed Amicar (used to prevent and treat severe bleeding) due to the blood we see in her stools and vomit. We are sure all of her platelets are going to the membranes to stop the bleeding and just can’t keep up. She has been having daily platelet transfusions all week. Her hemoglobin is also dropping rapidly. After all the work that Dr. O'Leary has done for Katja, she has turned care over to Dr. Melloy and Dr. Humbert at CentraCare in St. Cloud. Katja is currently at home. We will not be returning to Childrens for any future treatment. This means we can remain close to our family and friends and still get the treatment Katja needs to remain comfortable. We are so thankful to be close to home, but feel some loss after spending three and half years at Childrens.

God bless all the doctors and nurses who care for Katja.
Pray that this new therapy works its magic.

Saturday, September 11, 2004 12:50 AM CDT

Hello everyone,
Katja was admitted into Fairview Hospital Thursday evening, mostly to perform diagnostic tests and observation. We needed to have CT scans done because she has been getting consistent fevers of 102. The fevers are expected, but her white count also increased. We were afraid she could have an infection. Her doctor at Fairview wanted to rule out a fungal infection. All blood cultures are negative for infection. Her sinuses look better, but she is still battling a sinus infection. Her lungs look good, but her spleen is enlarged. The enlargement is causing pain in her rib cage (left side of course) and we believe it is pushing on her diaphragm causing strapping pain in her left shoulder. She also has mouth pain and continues to have stomach pain. We have put her on TPN (IV nutrition) which also causes nausea and vomiting as well as hot flashes. We are going to try to address her pain with Tylenol with Codeine, but hope we can add Dilaudid. Katja is pretty uncomfortable right now and cries most of the day; in addition her affect is pretty flat. Katja is demanding our attention non-stop. This is not our Katja. She will be discharged today around 6:00 p.m. and returning home. We are going to try to move forward with a maintenance chemotherapy regimen to make her more comfortable.

Although we greatly appreciate all the gifts Katja has received over the past three and a half years during her treatments, we ask that you not send any more items. Katja has more art projects, stickers, beads, markers, crayons, paper, books, toys, and stuffed animals then we know what to do with. She has many items she has never played with or used to date. What we will ask is if you feel like you would like to help, please consider sending money to the Katja Sufka Fund at Living Waters Lutheran Church. We will post the information at the end of this entry. If Katja goes inpatient at Childrens Hospital in Minneapolis, we know she would love to receive cards. If at all possible, send pictures of the people sending the card or maybe pictures of places or unique things. We know she will love that as much as a toy. As she becomes sicker, she becomes less and less interested in playing. Thank you for understanding.

Donations for final expenses can be made to:

Living Waters Lutheran – Katja Sufka Fund
1911 4th Avenue North
Sauk Rapids, MN 56379
(320) 255-1135

Friday, September 3, 2004 6:38 PM CDT

We got bad news today. Katja will not have a third transplant. Her doctor spoke with every doctor at Fairview and called experts in AML and transplant in Wisconsin. Everyone stated strongly that another transplant is not an option. Because she has had intensive pre-transplant regimens for both transplants, a third transplant would kill her. Even if it didn’t kill her, the cancer will come back. We now need to focus on quality of life. If we do chemotherapy and it puts her in remission, it will be only for a short amount of time. Katja's cancer has won the battle.

Sunday, August 29, 2004 3:34 PM CDT

Katja's body is betraying her. The blast (cancer cells) are in her peripheral blood now. We are afraid her Leukemia is growing more rapidly then it has in the past. Last relapse, she made it three months before any blast showed up in her blood work, then it increased quickly. This time, it was only 13 days for the blast to show. We do not believe there is much, if any Graft vs. Leukemia. Our options are getting smaller with each passing day.

Katja is also not eating well. She is feeling ill more often and has pain in her stomach (from the GVH?) The one area she is improving on is her physical strength. She is showing improvement at every physical therapy appointment. This is such a cruel betrayal.

We are spending every day trying to let Katja do whatever she wants. We went to a movie in the theater yesterday and going horseback riding today. We pray she can continue to feel well enough to enjoy things any normal child gets to enjoy. Kindergarten starts on Wednesday. She will not be going to school, but hopefully will get a taste of school at home. Please pray for more time for Katja. She needs time to get off her current medications, so we can move forward with treatment.

Wednesday, August 25, 2004 7:07 PM CDT

We are sure everyone would like to know what is going on and what will happen next, but we really don’t have any answers. Monday, we met with three of Katja’s doctors. Her transplant doctor, Dr. Grewal, filled us in on her biopsy results. Of course, they are not good. She has about 25 percent of her cells growing in her marrow (cancer cells) and 75 percent graft. Dr. Grewal is NOT optimistic about the Graft vs. Leukemia wiping out her cancer after she is tapered off the immunosuppressive drugs. He believes that if it were going to work, it would have already. As we taper Katja off her cyclosporine and steroids, we need to be careful not to let the Graft vs. Host get out of hand. People can die from Graft vs. Host disease that is severe. The Graft vs. Host is our biggest struggle right now. Katja needs GVH for the Graft vs. Leukemia. But, because she has GVH, she may be excluded from some possible treatments. That became the subject of the next two doctor consultations.

As we mentioned before, there are two possible treatments in clinical trial right now. Both have specific parameters to meet in order to qualify. Both do not allow her to be on immunosuppressive drugs and she needs to be off them for up to a month before qualifying. If the GVH becomes worse, she will need to be put back on the steroids and cyclosporine. This would, once again, suppress the graft from growing and possibly let the Leukemia take over. Not to mention, she would be disqualified from the studies. On the other hand, if the GVH doesn’t become aggressive enough to possibly wipe out her Leukemia, then we are faced with trying to figure out another course of treatment with even less options. If you haven’t figured it out yet, we are stuck between a rock and a hard place. People on the web site have mentioned other drugs like Gleevec. Many of the drugs like Gleevec and Mylotarg target specific chromosome markers. Gleevec targets Philadelphia Chromosome Positive found in CML. Katja is not positive for this marker. Mylotarg specifically targets CD33- Positive AML. Katja is not positive for this marker either. We do appreciate the suggestions and please keep making them. We do check them out, but we also have a good understanding about her cancer and its chromosomal markers. Katja’s cancer is very rare. She has M7, Acute Megakaryocytic Leukemia. Of the AMLs it is the hardest to diagnose and even harder to treat. Most drugs and chemotherapy that target specific cancers are developed because they know more about the cancer and they have more people to study when coming up with therapy regimens. Someday there will be chemotherapy that targets each chromosomal marker for every type of cancer and provide a cure for many people. They are no where near finding a cure for Katja.

We have to face many fears at this time. One huge fear is what will happen if we do nothing. Her cancer creates considerable marrow fibrosis. This is like adhesions in the marrow, which cause considerable pain in all her major bones (where marrow grows). Before she was officially diagnosed the first time, she complained of severe pain in her legs, arms, chest, head, etc. It was the worse experience we had at the time. At that time, she had about 27 percent blast (cancer cells) in her marrow. Now she is already at 25 percent.

Today, we spoke to her oncologist from Childrens. Dr. O’Leary is leaning toward doing conventional chemotherapy, specifically Ara-C. Katja has reached the maximum doses of many chemotherapy drugs due to past treatments, radiation and two transplants. Katja has done very well with Ara-C and it has put her into remission every time to date. At this point, it does make sense to try getting her into remission, wipe out the graft (and at the same time the GVH) and look at a possible third transplant. If a transplant doesn’t look viable, then we could try the experimental therapies.

Way too many if…then…statements. We just need to get over the first hurdle, getting her off the immunosuppressive drugs and pray the GVH doesn’t get out of control.

Friday, August 20, 2004 4:01 PM CDT

Katja was discharged from the hospital yesterday, so we are back home. She seems to be doing very well, even better than before. Her strength continues to improve and she surprised us by walking (on all fours) up the stairs without help. She is such an amazing girl and her fate is so incredibly unfair. Yesterday, she 'read' to Evan, drew a wonderful picture of a lion, and was full of wisdom. We are consumed with thoughts of her missing out on so many firsts, like dancing ballet, playing guitar, being a cheerleader, etc. These are the things she says she wants to do when she grows up. It is so devastating. We have not told her the Leukemia is back. How do you tell a five-year old there is no cure for her cancer? Any treatment we do from here is for quality of life. More irony has come our way. Her heart is doing very well. In fact, so are her liver and kidneys too. How can she go through so much, recover practically unscathed and still have her cancer return? When they say, “life isn’t fair,” they have no idea.

Wednesday, August 18, 2004 1:16 PM CDT

As we knew, the Leukemia is confirmed. Katja will be in the hospital until she has a negative blood culture in her lines. Continue to pray for us.

Tuesday, August 17, 2004 2:28 PM CDT

No remarkable update at this time. Katja is still at Fairview hospital, but without a fever. Her blood culture did come back positive for a staph epi (Staphylococcus epidermidis) infection. Staph epi is coag negative, gram positive infection born in her central line. She has had it many times before. It came back sensitive to Vancomycin, so she began that treatment today. Since it is not sensitive to Tobramycin, they stopped that antibiotic. She is still on Gatifloxicin (she has been on it prophylactic since transplant). She also has a sinus infection in all four quadrants (Mom once again diagnosed this one). It is now more likely that the infections caused her fever and not the GVHD (or at least we can hope). Katja was tapered a little more off her steroid Monday. Time will tell if the GVH is out of control or not. The symptoms seem to wax and wane, so it is difficult to tell if it is getting worse with each taper. She is not complaining of stomach pain right now and she is in good spirits.

No more word on her biopsy or the Echocardiogram they did almost two weeks ago. We do at least know one thing; we could explain every low or high blood count by the infections and GVHD. The combination could make her marrow have abnormal cells that could look suspicious. So, there could be a thread of hope that the results will not show leukemia. Do we think it will come back with positive results? To be honest, no. We have done this too many times and have been right every time the doctor was wrong. We would love to be wrong this time. I pray we are wrong.

We want to thank everyone who has called and come over to our house to visit. It has meant so much to not feel so alone. Everyone says they don’t know what to say. I don’t even know what to say, but the one thing I do know, it is helpful to just be there and not have to say anything. When studying to become a counselor, I learned that you don’t have to come up with some profound statement when talking to someone experiencing loss or grieving. I have often told others, “I don’t know what to say.” I think people find comfort in just knowing you care and that you are just with them, without the need for words. It was the best lesson I learned in school. So please don’t feel like you need to solve our problems, or make us feel better, just be our friend, family, or acquaintance. Just be there for us right now.
Thank You!

Sunday, August 15, 2004 4:11 PM CDT

When it rains, it pours. Katja is back in the hospital with fevers. She had an AWESOME day yesterday at a cabin in Brainerd. She fished a little and caught a tiny fish (a first for her). She got to put her feet in the lake. She made Smores on a fire. She got to ride a wave runner. It seemed like a normal day. Then the bomb hit. We were instructed to reduce her CSA (the immunosuppressive agent to prevent transplant rejection) starting last evening. By this morning, she spiked a 102.5 temperature. The CSA and steroids work together to keep the graft from growing to rapidly and from attacking her body/organs. Because we have been tapering her steroids and started to taper her CSA, we think the combination let the GVHD flare up yet again. She is having severe stomach pain and diarrhea.

We have gotten little information about her biopsy results. They keep saying the tests are inconclusive. They saw roughly 2 percent abnormal megacariocytes (the precursor to platelets and the type of cell that her cancer comes from) in the Flow test. We are waiting for results from a Fish test and RFLP.

Her platelets have now dropped to 10,000 (she typically bleeds fewer than 30,000 which is her safe parameter). We haven’t heard about her other counts. She is bleeding in her gut, so tomorrow they will do a CT Scan of her stomach and sinuses. Katja is not acting sick, but she quickly gets into bad old hospital habits. We have no idea how long they will keep her in the hospital. They usually say they keep will keep her until she is fever free for 48-72 hours. We know from experience that her fever will not go away unless they increase her steroids and control the GVHD. They will not increase her steroids because of the possible relapse. By reducing her CSA and steroids, they hope the graft will attack the Leukemia and put her back in remission. The side effect of doing the taper is the possibility of the GVHD getting out of control and spreading to other organs. There seems to be no easy answer here.

We also feel like we are right back where we were a year ago. Her doctor is talking about possible treatment options and they are the same as a year ago, minus the option we chose last time. The two options are MT2003-01: Allogeneic natural killer cells in patients with relapsed acute myelogenous leukemia (ALM) (A.K.A. Chemotherapy followed by donor white blood cells plus Interleukin-2 in treating patients with acute myeloid leukemia) or Decitabine in treating children with relapsed or refractory Acute myeloid leukemia (AML). Of course, there is always the option to do nothing and let nature take its course. We will work with Katja’s oncologist from Childrens to make the decision after talking to the to doctors from Fairview that are running the studies.

It really feels that we have woken up to the worst nightmare. Please pray for us.

Friday, August 13, 2004 5:48 PM CDT

Friends,
I can't believe that I have to make this entry, I don't know where to find the right words. Our hearts are sinking today. The preliminary results of Katja's bone marrow aspirate had "about 12%" suspicious cells. At first, Dr. O'Leary said the pathologist thought they looked more like red blood cells, later he feels that they look more like Katja's usual blasts. Although there are further studies pending, we are broken people again. Just hearing the tone of voice of our doctor was enough.

It seems that Katja has jumped every hurdle, she's survived the un-survivable. And still, the cancer lingers. Katja is a very strong girl, strong in spirit and normally strong physically. It seems her "original" marrow is strong too.

Last December, we felt this way too. We took the Make a Wish trip as if it was our last time together. We had to make the hard decision about what was best for Katja. We had to live with the knowledge that she had very little chance for success, but we plowed onward. We admitted her to Children's wondering if she'd ever leave there. She did on her own two legs. We admitted her for the second BMT, wondering if her body would tolerate all the chemicals and fight off infections. Again, everything went smoothly and Kat defied the odds. You can imagine that our heartache is compounded by these extreme highs and lows. We really can't even process this mentally right now. We just know we are all, Katja included, very tired of our screwy lifestyle and of all the hardships lumped on our magnificent daughter. We are tired of her pain, her nausea, her physical limitations, and the upheavals of normal life.

Once all the data is in, we will formulate a plan. We will likely drop the CSA and steroid very rapidly to give the marrow a chance to fight. But, we know that her GVHD will flare up making her more uncomfortable and at risk. We hope that there are other methods for controlling the diarrhea and nausea. We don't know if there will be any other treatment offerred, and of course she is just too beaten up to do a third transplant so soon. The truly horrible irony is that the graft is somehow strong enough to cause the GVH but not enough to fight the cancer???

We still intend to do a small getaway tomorrow, hopefully uneventfully. Katja still plans to weekend with Granny. We'll do whatever it takes to make her happy.

We will keep you updated. We've continued to ask for prayers, now we need nothing short of a miracle and our hearts are having trouble seeing any possibility of one.

Love
The Sufkas.

Tuesday, August 10, 2004 6:51 PM CDT

Hi everyone,
Things are not looking good right now. Katja's counts took a huge nosedive yesterday. She needed packed cells after only a week and a half, platelets after two days and G-CSF after getting it on Saturday. She also got a scheduled medication at clinic yesterday, so she was at clinic for over 5 hours. When individual counts drop and the others do not, it seems isolated and not anything to worry too much about. But drops in all her counts coupled with diarrhea, nausea, and headaches are very concerning. We hate to even infer that she is losing her graft or worse yet, but it is crossing our minds constantly.

We have not gotten results back of her echo or the stool cultures from this weekend. Friday seems an eternity away. We will find out if there is Leukemia in her aspirate as soon as Friday afternoon, but we will not know results of her bone marrow, percentage of donor, viral studies, etc for weeks. In addition, we are waiting for the explosion of Graft vs. Host disease that will put her in the hospital. This could prove to be very stressful weeks ahead. Please keep Katja in your prayers.

Saturday, August 7, 2004 1:28 PM CDT

Well, we are back on the ride again. Katja started her taper of steroids on Monday again. She didn't have any of the usual diarrhea until yesterday. She is now spiking a low-grade temp that we will have to watch. Just like clockwork, she waits to have problems until the weekend. Her doctor is, of course, on vacation the next two weeks. This is concerning because every doctor has different ideas of how to treat Katja’s problems.

Katja has her biopsy Friday. We pray everything in normal and we can breath a little easier. Every bruise or aches and pain make us worry. She now has some bleeding in her stools. Katja had an echocardiogram done this past Thursday to check on her heart. Because she continues to have pitting edema and high blood pressure/heart rate, they want to rule out damage to her heart. We did not hear any results on Friday, so we assume we will hear something Monday.

Evan is growing like a weed. We thought he figured out the day/night thing, but the last two nights he has woken up every hour after 4:00 a.m. then sleeps all day long after 10:00 a.m. On that note, we would politely ask that you call us after 10:30 a.m. Katja typically sleeps till that time and we are trying to fit in any sleep we can in the morning. Thanks for understanding.

We ask that you continue to pray for Katja, especially for the upcoming bone marrow biopsy. God bless each of you.

Saturday, July 31, 2004 2:39 PM CDT

Hello,

Things are going okay. Katja has not had an episode of vomiting/diarrhea since last Saturday. She seems to be doing better overall. She made it three weeks and one day without needing a packed red cell transfusion, yeah. Her white count continues to be low, we haven't seen normal numbers since she was first admitted to the hospital for her GVHD. Her doctor is not sure why her counts are low. One theory is she has a virus that is lingering due to the steroids suppressing her immune system. She will have a viral screen done with her bone marrow biopsy in two weeks. Her doctor is also not concerned with her bruising. He thinks that if it were Leukemia, it would show in her white blood count. It also does not appear to be med related. He believes she is getting it due to low platelet counts. Katja’s doctor also does not want to treat the possible GVHD flare-ups at this time. He is going to rule out viruses like C-Diff, etc. He also doesn’t want to do a Flex/Sig colonoscopy unless she presents more consistent episodes of vomiting/diarrhea. We are going to begin the taper of her steroids again on Monday, so keep your fingers crossed. We would love to see her off steroids and see her have energy and movement like a normal five-year old. Oh, by the way, the princess’s birthday is Monday. We are having Evan’s baptism and Katja’s Un-birthday party tomorrow. Wish Katja a Happy Birthday!

** See new photos now

Sunday, July 25, 2004 9:55 PM CDT

Hi everyone,
We are on a roller coaster ride again. As we mentioned before, Katja got very sick at clinic on Wednesday. She felt much better right after the episode of vomiting and diarrhea. Everything went back to normal the next day. It happened again Saturday afternoon. This time we were sure she would spike a temperature and buy a trip to the hospital. She did spike a low-grade temp, but it went away and was normal through the night. Today, she seems much better, but the diarrhea continues on and off. We have stopped the taper of her steroid until we can talk to her doctor tomorrow. We will likely have another sleepless night worrying about a possible fever and middle of the night trip to the hospital. We pray Katja does not end up in the hospital this week, especially with her birthday a week away.

We are also worried about the strange bruising she is getting lately. The bruise starts out very red, like a blood blister, then changes to a bruise. There is no known source of the bruising. We have been giving her platelets every four days, and her level on the fourth day has been below her parameter. Her hemoglobin is low, but not low enough to transfuse. This has lasted almost three weeks, much longer than the last two transfusions that lasted two weeks. We hope this bruising is due to low platelet and hemoglobin levels.

Evan did better with sleeping the last three nights. He stays up until midnight or 1:00 a.m., then gets up to eat every three to four hours. The spitting up today seems less, but only time will tell. He will likely have to grow out of that phase. He is definitely more alert during the day and is now smiling at us with some talking too. He has smiled everyday since he was born, but only when he was falling asleep. Now he is looking at us and communicating. It is exciting to see this new stage of development. He looks so much older and bigger already.

Please pray that Katja does not need more treatment for her GVHD, that her upcoming biopsy is 100 percent donor and all healthy cells.

Thursday, July 22, 2004 11:16 AM CDT

Hello again everyone.

We can't believe summer is flying by so fast. We are nearing Katja's 5th birthday as well as her 6 month post-transplant date. We are a bit nervous right now. It seems that the GVH is coming to a boil again. Katja has had more loose stools and threw up a ton at the clinic yesterday. As you might remember, both recent hospital stays started with a vomiting episode and diarrhea. She's still eating the same old menu of black beans etc and doing fairly well. We've finally gotten her fluid regulated and you can actually see the normal shape of her feet and hands now.
She is still needing platelets about every 3-4 days, might need blood this week (it's been over 2 weeks since the last blood transfusion) with hemoglobin below 9 yesterday.

If the steroid taper continues and the GVH erupts, it will likely mean more aggressive treatment of the GVH using other chemo drugs - most likely involving at least a short hospital stay :( We really need the prayers that the GVH will calm down so we can get Kat off the steroids without problems. We'd also be happier if her counts would rise and stay nearer the normal range.

Kat's next bone marrow biopsy will be sometime in the middle of August at Children's, obviously we'll be on eggshells for that.

Evan is much the same, growing and changing rapidly. He's mastering his head control and trying to use his hands more now. He's still spitting up a lot but it doesn't bother him as much as us and our washing machine. Sleep is still fragmented for now. All "normal" but hopefully going to turn around very soon...pleeeease.

God Bless you all.

Tuesday, July 13, 2004 4:49 PM CDT

Hello everyone.

Sorry so long on the update, but it's continually busy around here. Evan is still trying to live like a vampire, maybe slowly moving toward letting us sleep a little. Katja still eats constantly, and usually eats all the same items.

Everything is mostly stable. Kat's needing platelets every 3-4 days, her white count and ANC are flip flopping from 1000 to 4000 depending on the day. Her weight is finally dropping since we now have IV lasix at home (we can't believe the doctors let us do it finally) and her swelling is less. Katja had her first PT appointment and surprised us a bit with some of the things she could do. She will be having two visits a week to learn new strategies for moving herself and to regain strength. All in all, everything is really slow. We keep waiting for the counts to stabilize at least, but think the GVH is slowing them.

We are all feeling a little cabin fever. Even on the most beautiful day, we seem stuck in the house for fear of exposure to bugs (insects AND microorganisms). We long for a "normal" summer day at the beach, picnic, etc...sigh.

We do like entertaining and want visitors as long as people are healthy. Kat loves playing cards right now, not a trait inherited from her father (maybe from the great grandparents or her godmother?). She makes up for her mobility loss with frequent outbursts of sarcasm and ridiculing TV personalities..."oh yeah, that's a nice hairdo there mister...not."

Thanks for continuing to check in, keep praying for the counts to rise rise rise and the GVH to stay away.

Sunday, July 4, 2004 1:42 PM CDT

Happy 4th of July everyone! Katja is doing well. It seems like her platelets are beginning to recover. She needs transfusions every third day and it has not dropped as low when we check it prior to infusing. We have begun to slowly taper her steroids again. We are very worried about the GVHD coming back again. She seems to have signs of it each time we taper. If the steroids do not work this time, she will need a flex sig/colonoscopy to check to see if it is still in her lower GI. If it were present, she would need a more aggressive treatment. This would not be a good thing, because she could lose the Graft vs. Leukemia effect that she needs to keep her cancer away forever. That is assuming she has Graft vs. Leukemia as a result of the Graft vs. Host Disease. Remember, they say a little GVHD is a good thing. We pray it is resolved with the steroids and that she has Graft vs. Leukemia present to attack any possible Leukemia in the future.

Evan is completely confused about what is day and what is night. Last night, he slept two hours between 10:00 p.m. and 7:30 a.m. We are pretty exhausted. He sleeps like a little cherub all day long. NOTHING works to keep him up during the day.

We are excited to be home again this 4th of July. We have spent every other year down in Minneapolis due to treatment. The best place to watch fireworks in Minneapolis is the top of the parking lot at Children’s Hospital. We have spent two 4th of July watching fireworks there. You can see fireworks across the entire skyline. Nothing is better than the fireworks in St. Cloud for us. They are practically in our back yard. We are one block from the park and the fireworks are over the river next to the park. We could literally watch them from our master bedroom (and we may just do that this year).

Thank you for checking on us and signing our guest book. God bless you all.

Monday, June 28, 2004 11:04 PM CDT

Hello all.

Obviously, it's been a little hectic around here lately. Everyone is slowly recovering though we haven't yet figured out just how life as a family of four will work. Katja is eating almost constantly (though the menu is fairly limited to her "safe" favorites) and her mobility is still quite restricted. She is walking better and is more confident, but stairs, chairs, and her bed are still hang-ups. She is retaining a lot of fluid and has the typical steroid effects with weakness and muscle wasting, puffiness of the face and midsection (often her innie button becomes an outie).

Evan is doing all the typical baby stuff, awake all hours of the night and sleeping beautifully during the day. He has already gained a few ounces and grown even taller. He's kept us busy too, though. He has had numerous clinic visits with jaundice/high bilirubin, and now a couple other minor nuisances. Jacqui has her clinic visits too. So...between all of these, we basically have daily clinic visits, labs, or at least talk on the phone to our favorite clinic staff. We are on a first name basis with the whole Centracare lab/peds/short stay staff...some of them are only just beginning to bend to our will (we're so used to getting our way you know). Everyone has been great and it is especially nice to have such a good coordination of care between our local folks and the BMT clinic. Hats off St. Cloud for finally realizing the need of us cancer families!

Katja continues to play around with the GVHD of her gut, and her steroid taper has been held trying to prevent a full blown flare up (fever, diarrhea, hospital admission
:( and all). She's still needing platelets often and her other counts waffle all over the place. She has had some good play dates and is having some fun at home, but still complains of being bored alot. Once her physical limitations improve, we'll be back to having real fun and she'll be back to her usual independent self.

Thank you all for the well-wishes and for keeping tabs on us. God Bless you all.

Check for new pictures soon!
(just not today)
Evan's Pictures

Saturday, June 19, 2004 11:02 AM CDT

For those of you who know Katja, you know that she has a huge vocabulary, is quite profound, and just so funny. Well, the other night she was watching cartoons and began saying, "oh no, oh no, oh no." After a while, I thought, okay maybe this isn't about the cartoon and I took the bait. I asked, "what, oh no?" She replied, "I think I'm falling in LOVE with my baby brother" and continued, "do you think it is okay if I kiss him?" How sweet is that?

Katja is doing very well. She seems to be getting stronger and is becoming more independent with walking. She is eating a lot right now and seems to be making up for lost time in that department. Of course, it would be easier if we hired a full time chef, because she eats small amounts of many different things and keeps us running all day long (our first full time job). Her blood counts are finally moving in the right direction with her white count on the rise and getting platelets every third day, YEAH! Red cells are needed every week to a week and a half, but that will also change soon, we hope.

Baby Evan is such a joy, not to mention he is very cute. He is working on figuring out his eating, sleeping, and pooping schedule (our second full time job). He did end up having jaundice with a high bilirubin, so he has needed daily bili checks. So, as Katja is cutting down on clinic visits, we replaced them with daily blood work for the boy. He needed to start treatment for the high bili yesterday, which consists of him lying in a mini-tanning booth all day, except for feeding times. The light therapy worked and he stopped the treatment today. But, he has another bili check tomorrow, ugh!

Our big news yesterday came from the University after testing Evan’s cord blood. He is a perfect 6 of 6 match with Katja’s HLA typing. Not sure what that means at this point in time, but it is nice to know. Evan had a 25 percent chance of matching Katja. We will store his cord blood for at least ten years and hopefully will not need to use it for anything.

Evan’s name means ‘God is Gracious’ and indeed He is. Evan is our gift from God and a gift to Katja. Thank you everyone, for you support and continued prayer.

Monday, June 14, 2004 2:43 PM CDT

Well, we're back in the hospital again...

Jumping for joy this time!!!

Evan Aaron Sufka was born early, even earlier than planned. He wanted out and for good reason. He was born at 1:30 pm on Sunday, June 13th. He is even bigger than Katja was at birth, and two weeks early too! He weighed 8'12" and was 20.5 inches long. He is doing very well. Mom is doing well considering everything. Big sister is beaming with joy and has visited twice already.

Pictures are in!

More later, God Bless you all.

Wednesday, June 9, 2004 9:38 PM CDT

WE ARE HOME again. Katja responded well to the steroids and is back to her normal self (on steroids). She gets into a routine at the hospital that is not very positive. As soon as we got there Sunday morning, she began asking for IV nausea medicine. She refuses to use anything when we are out of the hospital, even when she is very nauseous. Then she decides that she doesn’t have to eat and she fights us taking any oral medications. She asks the nurses, “can I have it IV?” We know that her stomach was definitely not working right, but the hospital habits are painful for us to experience every time. Once the higher dose of steroids was on board, she began to at least say she was hungry. She slowly began to eat again. By discharge today, she was almost back to her old self, including eating 7 pieces of bacon this morning. She was on a bacon strike for almost two months. Her new staple food is sausage. For three weeks we had to get Burger King’s sausage and egg Croissandwich every morning. Then she decided to go on strike with that. Now we have to get her black beans and tortillas from Chipotle and corn on the cob. Before we went back to the hospital, she began to try things she used to like before the first transplant. We are so worried this hospital stay will set her back once again. But today, on the way home, we needed to stop for her black beans and tortillas. When we got home she wanted chicken noodle soup with the skinny noodles along with real mashed potatoes and real turkey gravy. (Thanks to Dad making a turkey until 3:00 a.m. the other night). Things seem okay again.

Even though Katja was discharged today, she has an appointment back in the cities tomorrow. That is the price we pay for trying to help normalize her life. It will probably be a week before her blood work looks better again. Things always look worse in the hospital. We pray that things resolve quickly, especially her diarrhea and that the GVHD is wiped out completely this time. NO MORE TRIPS TO THE HOSPITAL!

***Update Thursday night. Katja's labs were already normalizing. There is just something about the labs taken while she's an inpatient that is fishy. Her hemoglobin, platelets, and liver functions were all closer to normal today than they were at discharge yesterday! Hmmm. we're stumped but happy with this. Back to the Centracare clinic tomorrow and loving it.

Sunday, June 6, 2004 4:37 PM CDT

Well, guess where we are...at the hospital again. Katja spiked a 102.9 temp this morning at 1:00 a.m. By 2:45 a.m., she was in her hospital room getting loads of blood drawn and waiting for a chest X-ray. Her chest X-ray was at 4:00 a.m. and she did awesome. What a trooper. The X-ray, urine, and blood work all looked good. So what do the doctors think? The usual - virus or bacteria. We think the GVHD might not be under control. Katja has had sporadic diarrhea since we left the hospital a few weeks ago. It has seemed to increase ever so slightly with each week’s taper. It now looks more suspicious. If her diarrhea increases or continues, the docs are looking at repeating a Flex Sig/Colonoscopy. This time, we rather have it done sooner than later. If the GVH is still present, they will just increase her steroid again. She is now on half the dose of where she was when she restarted steroids.

The other likely culprit is a virus, because her white count has also dropped and those two things sometimes go hand in hand. Another strong possibility is a sinus infection. She is susceptible to them and with Mom fighting a sinus cold, it is very possible.

With all these possibilities it looks like a three day stay here at the minimum and we pray whatever it is gets resolved, so we can get back home.


***UPDATE: Everything in the last day looked exactly like it did the last admission. The fever came back, right on cue, at about 32 hours (just like last time). So, the doctors just decided to restart the steroids at a therapeutic level and will tinker with her CSA as well. No biopsy yet unless she doesn't respond. We should know within 2 days, then will likely get home again and start over with everthing.

Friday, June 4, 2004 6:30 PM CDT

Things are going pretty good today. We found out the results of her bone marrow biopsy from two weeks ago. Everything looks good. She is 100 percent donor and has about 30 percent cellularity. They did see some megakaryocytes, which are the precursors for platelets. They also did a Fish test and found all 400 cells to be the donor and none of her chromosomal cancer markers were found. We are breathing a little lighter today!

One thing bothering us is her white count dropped significantly over the past week. Katja needed G-CSF (growth factor) twice to get her white count and ANC (absolute neutrophil count) up to help fight infections. She could have a virus, which is the usual explanation for a drop in the white count or it could be one of her medications. Bactrim is sometimes a culprit, but she is on another form of medication for pneumocystis. Her heart rate has also been high for a few weeks, but her blood pressure is stable. This means we are cutting back on one of her blood pressure meds and hope things even out. Katja gets very excited when we have to hold a medication or cut back on the amount given. She told Grandma, “guess what, I only have to take half of my Amlodopine!” She calls all her medication by name. It is sad and funny at the same time. She listens so intently when the doctor is talking and asks questions about things she doesn’t understand. Her doctor commented today about how she listens and talks like she is 20-years old, not four. He has no idea.

Her platelets look like they may be holding well, so we are going to try to make it through the weekend without a transfusion. Her hemoglobin is also holding better this week. This is exciting, but also makes it more confusing why the white count is dropping. Sometimes things just happen post transplant that has no know medical explanation. We just pray this improves.

Pray that her white count goes back to normal, that her platelets start to grow, and her hemoglobin also starts to grow on its own.

Tuesday, June 1, 2004 2:16 PM CDT

Hello everyone. Since we've been home, it's been extremely hectic so sorry we haven't updated more. It is fantastic to be in our own beds (sort of) and enjoying life at home (sort of). Let me explain. Katja is very weak from the steroids and muscle atrophy, we are told this is reversible. She is unable to get up off a chair or out of bed by herself. She has had a few falls before coming home and once at home, her legs just give out suddenly. Because of this, we have moved a bed into Katja's room to be able to help her to the bathroom at night (she doesn't mind this at all). We are otherwise going through the same old motions - food, meds, and some spontaneous mood swings.

Katja has been back to Minneapolis for two visits, we hope to cut this to once weekly there with the rest of the visits here in St. Cloud at Centracare. There is a little work to be done coordinating these clinics and our needs.

Thank you all for staying with us during this ordeal. So far, we have no further information on the biopsy results (except the very low immature cell count). Keep up the prayers for us and all our BMT friends.

God's blessings.

Tuesday, May 25, 2004 9:03 PM CDT

At 3:33 p.m. today, we were on the road home with Katja! We are overwhelmed and overjoyed. After talking to Katja's doctor on Monday, we decided to give a "trial run" at our clinic in St. Cloud. So tomorrow, we will meet with Katja's new pediatrician (we have known her for two years) and get platelets at the Hematology/Oncology Short Stay we have used over the past year. We do not expect any problems, but her doctor at Fairview would like us to test the waters and see how comfortable we are. Friday, we are back at Fairview to report and figure out what her schedule will be between the two clinics. We will also hopefully find out more details about her recent bone marrow biopsy.

Katja is already behaving so differently since being home for four hours. She is eating well, smiling, taking her medications without crying, and playing. It is so wonderful to see. She loves her baby brother’s nursery and likes checking out all her things in the house.

The whole family is full of smiles and we hope this feeling never leaves us again.

Friday, May 21, 2004 8:45 PM CDT

Day 101

What a week we have had. Katja got very sick (vomiting and diarrhea) on Monday evening after having a perfect day. It seemed like the GVH flared up and wreaked havoc on our poor girl. It was the start of a major set back. Because of feeling more nauseous and having lower GI cramping, she has not done well with eating or taking meds. She has lost over a pound and looks skinny, even with the steroids.

We have also been dealing with more cancer in our family. Katja’s Great Grandma Lorraine has relapsed and began chemo again last week. She was originally diagnosed the same day that Katja relapsed last March. We pray the chemo does its job and cures Grandma Lorraine. We also are dealing with another possible family cancer scare, but pray things turn out okay. Preliminary results do not look like cancer.

Now for the good news…Katja’s aspirate from today showed 0.2 percent blast (immature cells). This is better than the 60 day biopsy which showed 1.4 percent. We did find out that the 1.4 percent were normal immature cells and no cancer. We assume the same is true this time. It will be at least a week or more before we get any detailed information about this biopsy, but so far so good. Katja actually had a good day today, even with the biopsy. She ate food right after she woke up from the procedure, took her meds begrudgingly, and tolerated the pain in her back. She was rewarded for her bravery and making 100 days by going to Shrek 2 in a big theatre today. They are showing the movie every ½ hour, so we basically had the place to ourselves this afternoon.

If things start improving with her platelet production, we can go home in about a week and a half. We are not very hopeful about the platelets, because they are always the last thing to recover after a cord blood transplant and the combination of GVH and steroids suppress the production of making platelets. She has three strikes against her for increasing platelet counts on her own. But, we can only hope!

Please pray for Katja and pray for our family. We could really use some good news about everyone.


Remember to check out the fundraiser by Julie through Usborne books. The link is above this journal entry.

Friday, May 14, 2004 9:35 PM CDT

Day 94

Hello all. We hope you saw the link above this entry. We were offered this cool type of fundraiser through Usborne books. We started collecting Usborne books two years ago and have a number of books from this company. The books are very well-written and family friendly. Katja especially loves the "How Are Babies Made?" book and knows the whole process (except the part about conception - she'll get that when she's 8 or older probably :) We love the different "Search" series books, internet-linked books, Baby Animals books, and foreign language books. Check it out and enjoy!

Katja is improving slowly on the tummy stuff (eating, meds) but it's still a tremendous chore. She is still weak, blood pressure is still high, and her CSA level was through the roof. Med time means "my tummy hurts" time as usual. She is getting platelets every other day and slowly dwindling on the hemoglobin level but all other labs look good, especially her white blood count. Hopefully she will continue to normalize and start to realize that she is, in fact, feeling better than when she was in the hospital.

Wednesday, May 12, 2004 5:16 PM CDT

Believe it or not, we got out of the hospital yesterday. The doctors actually discontinued her TPN, YEAH. She started eating a few hours after they took it off. She was feeling pretty gloomy all day yesterday. We had to start all her oral meds again yesterday, which didn't go over very well. We spent the majority of yesterday trying to get her to take meds, Yuk! Today, she seems to be doing much better. Of course, we went to clinic today and her labs looked great. We do not know why they looked so bad while we were in the hospital. Katja is pretty weak from the high dose steroids. She is also VERY moody. Some of the time she is swearing, some of the time she is hysterically crying, and the other times she is just plain hysterically funny. We now know what it is like to have a teenager with serious PMS. It should get better after she begins to taper off the steroids again. She will be done July 12 with the awful stuff. Wish us luck.

Next week Friday is her 100 day bone marrow biopsy. Pray the results show 100 percent donor and lots of new cells (especially platelets).

Sunday, May 9, 2004 8:39 PM CDT

Happy Mother's Day to all the Mom's out there reading this.

Katja has not had a fever in 96 hours. So why are we not out of the hospital? Good question. The doctor's are talking out of both sides of their mouths and are non-committal as usual. We are hoping to be discharged tomorrow. They really do not have a good reason to keep us here any longer. The longer we stay, the worse she seems to get (mostly her mood). She is not eating because of being on TPN (IV nutrition). It gives her nausea, stomachaches, diarrhea, and hot flashes. The resident would not taper her off of it this weekend, because they apparently do not taper on weekends. We are NOT going to stay here to taper her off TPN. She needs to take her oral meds again, but won’t until she is off TPN. It is a viscous cycle. TPN has always been or nemesis.

Katja is getting very puffy from the high dose of steroids. She is also having blood pressure issues once again, due to the steroids and CSA. The blood pressure is a little high, so her medications are no longer therapeutic. Fun, Fun, Fun.

Katja stated that this has been the worse day of her life (we had to give her blood pressure medicine like we have for the past three months). All I can say is, “Happy Mother’s Day to me!”

Wednesday, May 5, 2004 4:57 PM CDT

Well, we would have put money down in Vegas that Katja does not have Graft vs. Host disease. We would have lost as usual. We should know better by now not to bet with the odds in Vegas. The Docs are preliminarily saying that she has a very mild case of GVHD of the gut. We still are having a hard time believing it, because it did not present like any text book case. On the other hand, we can believe it, because Katja has never followed the medical rules and likes to keep everyone on their toes. The positive thing about this is a little GVHD is a good thing and will hopefully lead to Graft vs. Leukemia. Graft vs. Leukemia is suppose to allow the graft to see the cancer cells as foreign and destroys them if they ever come back. She would potential have Graft vs. Leukemia her whole life.

The biopsy went well. We even saw the pictures they took in her colon and all we saw was a very healthy pink colon. Last evening the resident said it didn't look like GVH from the images they got (at least we are not the only ones who were wrong). She is restarting Orapred (steroids) and we should see a turn around in the next 4-5 days. Restarting steroids is also a good thing, because it may kick start her eating again. Maybe we will even see a discharge by Mothers Day.

The one concern with the GVH is that she can no longer taper off her CSA (Cyclosporin A) drug. CSA keeps the graft from growing too quickly and from the graft attacking her major organs (the graft can see her body as foreign and we don’t want that). The graft must learn to accept her body as its own. CSA can also protect her from getting severe GVHD. The problem is… if her graft is not at 100 percent strength and her own marrow starts to grow, she could lose the graft and her cancer can come back. That is what happened last time. Finding the balance at this time is critical. We pray to get through this as quickly as possible and begin the CSA taper before anything bad can happen.

Monday, May 3, 2004 8:47 PM CDT

Yesterday was Katja's year anniversary for her first bone marrow transplant. We didn't realize it until late in the day, probably because there wasn't much to celebrate. Although a year from February 10 will give us much to celebrate one year past her second transplant.

Things remain much the same. Katja is still spiking fevers every other day. She sometimes eats, sometimes does art projects, and mostly sleeps. This looks more and more like a virus. She now has a rash that look viral and white build up inside her cheeks that also look like classic viral signs. We are going through with the biopsy tomorrow to rule out GVH and to do a broad-spectrum viral screen. The fact is, even if it is viral, it will have to run it’s course. If it is GVH by some remote chance, then she will need to restart steroids (she takes her last dose tonight). The steroids will supposedly eliminate the fevers and help her gut return to normal if it’s GVH.

We will have results tomorrow evening; we are not sure what to pray for. A little GVH is a good thing, but we could be dealing with this for some time. A virus could keep us here longer. No answer will mean more guess work and anticipating the same old pattern.

Pray that whatever this is will turn around soon, so we can get back to our "normal" life.

Thursday, April 29, 2004 9:21 PM CDT

Katja is back on the old schedule. She spiked a lower grade temp this morning like clockwork. She slept most of the morning and then perked up around 3:30 p.m. The doc's are at the point of wanting to go fishing for GVHD or a virus in invasive areas. We are not quite convinced of their rationale. We are going to need a good reason and find out what they plan on changing if results show GVHD or a virus before agreeing to the procedure. For two weeks the doctor’s said, “it doesn’t look like GVH” and “GVH is in the far back of our mind for possibilities.” Now, twenty-four hours after making a similar statement, they want to do a biopsy to “rule out” GVHD. Of course, they wanted to do it tomorrow. So what’s the rush you ask? Good question. Time to think things through and look at the facts. If the procedure happens, it would happen Monday or Tuesday. We will know more tomorrow. Hopefully tomorrow, we will also find out the final results of her last biopsy.

Still praying for a turn around and a ticket out of here.

Tuesday, April 27, 2004 6:14 PM CDT

Katja is still in the hospital with no discharge in sight. She spiked a temperature yesterday morning, as expected, 43-hours after the last one. This temp wasn't as high, but hung on for hours. She spiked another fever this morning. This is new to the predictable pattern and unwelcome. Katja seems more lethargic and is not doing much at all. We pray that whatever this is does not turn septic. She has had her share of tests done, including an Echo, CAT scan, and X-ray. Everything continues to look good. We will start her on IV nutrition today, because everything she takes in gets lost from all the constant diarrhea and occasional vomiting. We cannot keep up with the electrolytes or the calories she needs. Of course, IV nutrition causes her diarrhea and nausea, but cannot be delayed anymore. We need to find the balance in her treatment and an end to her fevers.

Saturday, April 24, 2004 12:24 AM CDT

Hello everyone.

We're still riding a rollercoaster on 5B. Kat had a punky day Thursday followed by a rotten night. Her temp peaked at 103.7 and stayed there for quite a while. She had the shakes and chills, tons of labs were done with more xrays, and all were negative so far. We are having a hard time believing that a sinus infection is the only culprit here. She is now on 4 antibiotics, antifungals, and getting more frequent blood and platelet bumps.

Today is a new day though. Kat had no fevers yesterday or last night. She's been eating a little more and has been more herself. We're hoping the 36 hour cycle is broken, otherwise she'll be due to get a fever tonight.

Keep up the prayers for all of us here at the RMDH, it seems the road has gotten bumpy for so many of our friends here.

God Bless you all.

*Update: Katja spiked another fever at 5:30 p.m. this evening. This time she made it 45-hours before the spike. Considering she needs to be fever free for 72-hours before they let her go, this pattern will delay discharge indefinitely. We are very frustrated and worried that keeping her here longer will create more illness in the long run. PLEASE pray for this cycle to end.

Thursday, April 22, 2004 3:07 PM CDT

As Doctor Mom suspected, Katja has a sinus infection in all four-sinus cavities. Now that we know the culprit, they are changing antibiotics to cover a broader spectrum for the sinuses. It looks like the earliest we can get out is Saturday, IF she does not spike another fever. Things pretty much turned around for her 8:00 p.m. last night. She started eating a little again. Pray for NO fevers.

Preliminary results of the RFLP show 100 percent donor. The news is such a relief. We hope the final report states the same results.

Wednesday, April 21, 2004 5:35 PM CDT

Katja bought another two days in the hospital after spiking another 102+ temp in the middle of the night. Her pattern is showing a spike in temps every 36 hours (just when we are 12 hours away from discharge). It is pretty disheartening. Today, things seemed worse. She slept until 3:00 p.m. this afternoon. Then they took her down for a cat scan of her head, chest, and stomach. We are waiting for results. This place never moves too quickly, so we do not expect results until tomorrow. She seems a little better right now, but is not eating or drinking. Yesterday, she was her old self and was eating and drinking without a problem. Hopefully, she will be her old self tomorrow and NOT repeat this pattern of one good day, one bad day anymore.

We are also struggling with bad news from three of our close BMT families' recent biopsy and scan tests. The last two days have been full of overwhelming information and uncertainty. Please pray for Katja, Bryce, Mathew, and LaKota. We are all holding on to hope that everything will work out.

Monday, April 19, 2004 8:54 PM CDT

Katja is always keeping everyone on their toes. After having a "normal" day in the hospital yesterday, she decided to get "sick" again. This morning, she was really puncky and wasn't eating anything. By 1:30 p.m., her temp was on the rise. By the time they drew blood cultures and got her Vioxx, her temp was up to 102.7. She took a nap, got up and went back to her old routine of doing crafts and artwork. Then her blood pressure dropped below her norm. Kind of odd, considering we have been dealing with high blood pressure for the past two months.
Now she is perky again and asking for many different types of food and eating it too.

We have now eliminated the theory of this illness being related to her bone marrow biopsy. We are now leaning toward a viral infection (likely in her GI track). So, time is the only cure. Mean while, her counts are going up and down, but nothing to get excited about. It is not unusual after transplant(especially if it is a cord blood) to have huge drops and rises in the white count. Around day sixty, they also see a "dip" in red cells and platelets. They often see this trend, but have no know medical explanation. The residents and doctors actually got more excited about the recent drop in her hemoglobin then we did. Of course, we have been there, done that, and know our daughter well enough to know when to get excited. We assured the doctors that this is "normal" for Katja, especially after a procedure, and it is not some hemophillia problem when her red count rapidly drops.

It looks like we will try to bust her out on Wednesday morning, but we will see.

Pray she gets through this little bump in the road and gets back to the RMcDH. Who knows, we could be going home in two weeks.

Saturday, April 17, 2004 10:45 PM CDT

Hello all.

Katja bought herself a 3-day pass to 5B this morning. She threw up then spiked a 102 temp. So, it's cultures, antibiotics, and more incessant questioning by staff. This time, though, they seem to be listening and just doing whatever we have asked. She was admitted at 6am. As of 10pm, she seems to be doing better, eating chicken noodle soup and watching tv. We're not sure if this is backlash from the biopsy yesterday, viral, or bacterial. We'll have to wait a few days for the blood cultures to grow (or not grow).

Still no further news on the biopsy results (as far as donor/Katja, cellularity, etc.) We'll keep you posted.

That's it for now. Pray this will normalize immediately if not sooner.

Friday, April 16, 2004 5:40 PM CDT

Day + 66

Katja had her biopsy done this morning. She actually woke up in pain, which almost never happens. The nurse practitioner from Children's called us with preliminary results. There are 1.4 percent abnormal cells in her aspirate and Katja's doctor is very happy with that. Of course, hearing about any abnormal cells makes our heart sink, but we know that around 2 percent is normal for anyone. We have gotten news like this before; later to find out they were just immature white cells, not cancer cells. Not to mention, she just got off both growth factors, which produce lots of immature cells. We pray that they do not find any of her cancer markers in these cells.

Bad news on our home front. Our nine-year old fish has died. Yes, you read it right; we had a nine-year old African Cichlid fish. There is irony to having a fish live longer than many of the children diagnosed with cancer and other blood disorders. We would much rather have children live than our fish for nine years. Dad told Katja the fish died, and of course, she asked "Why?" Then you have to explain that fish usually last a month or so, but our fish had a LONG life and was very old.

Katja is now getting platelets (3 units) every other day. Her white count is holding well and even rising since we removed the G-CSF on Monday. Her red cells seem to be holding too. We are very happy with her blood counts these days and looking forward to better days ahead. We will update as soon as we know more about her marrow.

Saturday, April 10, 2004 11:55 AM CDT

Day +60

Katja continue to do well. She is scheduled for her next bone marrow biopsy Friday, April 16. We pray that she is 100 percent donor and things are continuing to grow.

Nothing has changed. She continues to need daily platelet transfusions. That will not change until she is off her growth factors (which are helping her increase her white count). One of the growth factors, GM-CSF, has been held the last two days and her white count has not dropped. The other, G-CSF, will be removed if her white count and ANC remain stable. Once she is off the growth factors, we should see any increase in red cell production and then platelet cells. It is a LONG process, so the two will not come back too quickly. She will also likely drop her white count by half when she is removed from both growth factors. We will pray that they will recover
on there own and that her blood will become perfect.

Happy Easter everyone and God bless.

Sunday, April 4, 2004 3:54 PM CDT

Happy Palm Sunday,

As we were reading an Easter story to Katja, we were struck with a realization about the "hard" times. The story talked about Good Friday, the day Jesus was crucified, as being the worst day ever. On the third day, Easter, he rose again and ascended into Heaven, a glorious day. We have mentioned many times in our journal that it took three days for Katja to get past the new complications that came up during treatment. The story brought to light that He is here helping us through the hard days and that things will get better in three days. This is the magic of three days, the reason to celebrate Easter and His work here on earth.


Katja continues to do very well. Most of the problems she was having prior to discharge have resolved. She is trying new foods everyday and is becoming more independent too. Sometimes, she forgets that she is not "sick" anymore and can do things for herself. The people around her also forget that she doesn't need our constant attention 24-7. In time, life will return to normal, whatever that is.

We got our first break from the clinic today. It is a little scary not knowing what her counts are or if she needs platelets, but we absolutely enjoyed sleeping in. Katja finally had a chance to play Polly Pockets with her cousin, Abbie, yesterday. How wonderful it is to see her be a kid again, after almost three months without seeing any friends from home. She has made several friends here at the RMcDH and even had a movie night with over 40 pieces of bacon served! She is not the only one who craves bacon.

Happy Easter to all of you and God's blessings.

Thursday, April 1, 2004 8:16 AM CST

Just wanted to do a short update since it's been a few days. Everything is still swimming along fairly well. Kat's white count went up, then down but is over 3000. Her ANC has been over 2500 a couple times but needs to be there two days straight so we can discontinue two of the meds. She's trying to expand her diet but bacon is still the staple food. Sleep is going better now that we're all acclimated to the beds and sounds out of the hospital. Kat is still needing platelets every day so far but that is expected. We are enjoying time with our new friends at the RMDH and can't wait for the improving weather to let us out more.

Thanks for the continued prayers, we still need them greatly.

The Sufka family.

Saturday, March 27, 2004 11:03 PM CST

Day +1(out of hospital)

As expected, Katja expended a lot of energy getting out in the hall before discharge and here at the RMDH. She's so excited, she forgets that she will get tired. The first night sleeping was a chore, so many new sounds, new bed etc. Otherwise, everything is amazing. Katja is so beautiful and it hurts so good to see her free at last!

Our first clinic visit went very smoothly today too. Kat got platelets and G-MCSF (another med to help raise the ANC); the whole affair only took 2 1/2 hours because everything was pre-ordered. Kat's platelets weren't as low as expected (26,000), her blood pressure was nearly in her normal range, and her creatinine was much much lower too (measures kidney function - a big fear). For now, we'll have every day visits there.

Only a few minor gripes so far...our insurance company decided that Katja doesn't need one of her blood pressure medicines. It's actually minoxidil - but is NOT being used to help her hair grow. It's funny, that medicine is originally for blood pressure but they found out hair grows better. Voila, Rogaine is born. The other oral BP meds would be several times a day, this is only once, so we're stuck buying it and waiting for the insurance company to relent.

I'm sure we won't update every single day because we don't have a computer in the room anymore, but we'll try. We have new pictures of our free-range daughter to share. She is anxiously awaiting visits from some close friends and cousins. We're going to need to screen everyone of course but she really has missed playing with other kids.

Eating and oral meds are going fairly well considering. Last time through, she didn't eat anything for a few months and was puking many many times a day to top it off. Lovely TPN.

That's it for now.

Thanks for staying with us and God Bless you all as Easter fast approaches. Happy Spring too!

The Sufkas

Friday, March 26, 2004 10:42 AM CST

Day +45

WE ARE OUT OF HERE!

We can't even begin to tell you how excited we are that this day has arrived. We are so incredibly thankful in so many ways. When we made it to transplant a second time, we were preparing ourselves to possibly leave the hospital without Katja. She has had so much insult to her little body; we just didn’t know how strong she was. Katja has proven to be one very strong girl and incredibly resilient. We are so thankful for this gift. Although, we have no idea what the future has in store and the odds are stacked against Katja, we feel this could be her cure. We would not have gotten to transplant without the wonderful care from Children’s Hospital in Minneapolis. We can not say enough great things about that hospital and the dedicated staff. Fairview doctors have tolerated our requests, even when they were unconventional and go against medical norms. We just know our daughter so well and what she needed to do well during this uncertain time. We are so thankful for the doctor’s listening and caring for Katja.

We wish every parent here could experience the joy of leaving this hospital with the hope and dreams of a future, but one third of the children do not make it. It breaks our hearts.

We are also so thankful for everyone's support and kind words. Our family and friends have been such a great support, both financially and emotionally. We could not have done this without you. We are thankful for your gift.

Thank you God for this amazing gift and a second chance for Katja.

Thursday, March 25, 2004 9:46 AM CST

Okay everyone, are you sitting down for this? Katja's ANC is 1000 today. Her white count is rising also and is now at 1900. There is no way they are keeping us here any longer. Hospital bust out tomorrow?!?!?

Wednesday, March 24, 2004 6:40 PM CST

Day +43

STOP THE PRESS! Katja has an ANC of 500! Mom spent all day disinfecting the Ronald McDonald room to get ready for Katja's arrival. The doctors don't know it, but we are planning to bust out this weekend. We hope Katja's counts cooperate. We can not wait to get out of here. Finally, things are really looking up.

God is great!

Tuesday, March 23, 2004 3:40 PM CST

Day +42

Still at 200 ANC. Katja's white count has increased again to 1300. Maybe one more day...

We FINALLY found out what the results of the RFLP (restriction fragment length polymorphism) today. The RFLP shows how many cells in her marrow sample are the donors. The results show 100 percent! Remember that the sample was probably less than 5 percent cellularity, so put that into perspective. Anyways, we are happy with that news. That is all for now, we are busy waiting.

Monday, March 22, 2004 7:44 PM CST

Day +41

Okay, here's the story...Now Katja is stuck at an ANC of 200. She has had a 200 ANC for four days. What is the deal with the number 200? Her white count is slowly rising, it is now 1000. Her urine continues to be tinged with blood. Her creatinine continues to go up and down as well as her blood pressure with her ever changing weight. We are adding more and more oral meds and looking very forward to busting out of here. Katja gets very upset every time a new med is added, but does fine the next time it comes. Everything looks very good otherwise.

My violent illness looks like food poisoning. One guess where it came from. Yes, the lovely food service that feeds the patients here. It is probably not a good idea to serve immune suppressed patients undercooked egg cuisine. It is frightening the things that can happen in a hospital that is suppose to protect you from harm. Needless to say, we will watch what we order and what we will allow Katja to eat from this place.

Saturday, March 20, 2004 8:37 PM CST

Day +39

White count is up to 800, ANC still 200. Not much new to report, just the usual goings-on including weight gain, fighting for lasix doses, and answering the same questions about baths, dressings, mouth pain etc etc etc. Interestingly, the doctors mentioned discharge with an ANC of 500 for a few days straight, but won't let us even walk the halls until her ANC is 500??

Kat has started having blood in her urine, peeing very often for small amounts but no pain or burning. We're concerned but the docs aren't. We'll wait and see like always.

Jac has recovered but is still a little weak and leary of being out in public after her illness. Baby boy Sufka is steady doing backflips, front flips, and otherwise trying out for cirque du soleil.

We'll write more later.
Love, the Sufkas.

Friday, March 19, 2004 12:14 AM CST

Day +38

Dad here, and a day early at that. Jacqui decided to get violently ill last night, so I rolled in at 3 am. No word from her yet but we hope she's resting at the RMDH.

Katja's white count rose yet again to 600 with an ANC of 200. Today, the docs talked about discharge when the ANC was over 500 for 3 days straight. Then, there's the part about taking meds orally. He is now on BP meds and antifungals orally, will need to get antivirals, antibiotics and finally the dreaded CSA (neupogen) orally. This is quite possibly the worst tasting stuff in the world though we've never tasted things like turpentine or diesel fuel (those would be my best guesses for what CSA tastes like). Last time, we mixed it with Hershey's syrup, with lots of gagging and mouth swishing afterward. We'll see this time.

Kat continues to eat bacon, more bacon, and some sugar cookies but no frosting! Her weight is creeping up a little but she's peeing more regularly. Maybe there are magical hidden calories in bacon?

We're close, very close...
With love, the Sufka family.

Thursday, March 18, 2004 10:05 AM CST

Day +37

We are on the map. Katja's WBC is finally 500. She has an ANC (absolute neutrophil count) of 100. Her creatinine came down to almost normal and her bilirubin is normal too. She needed packed cells and platelets this morning, but everything else looks great. This is the beginning of the end of our stay here! Wow, what a relief.

Wednesday, March 17, 2004 9:19 PM CST

Day 36

HAPPY ST. PATRICK'S DAY!

Things are still the same, big surprise. They have started another growth factor medication to try to get things rolling more. We hope for 500 WBC tomorrow. She is eating well and looks great. We have offically run out of chicken and bacon and we are in a bit of a crisis over it.

The creatinine rise from two days ago is still an issue. The doctors have no clue what could have caused it or why it has not come down. It is still twice the amount is was three days ago or twice the noraml amount. Everything else continues to look stable.

Tuesday, March 16, 2004 10:20 PM CST

Day +35

Well, it's after 10pm, Shrek is playing, and I've now cooked 9 more bacon slices. If I were you, I'd buy stock in Hormel right away. We're liking the precooked variety now, just 20 seconds but not too crispy this time around. Mmm Mmm good.

White count is still 400 and holding, fingers crossed tonight for 500? maybe more? Miss Katja is doing very very well over all and is unhooked enough to dance and twirl again, a real sight for sore eyes (even after she takes a spill).

Otherwise, just business as usual around here with the middle of the night floor polishing, zamboni after midnight...we need out!

Thanks for checking in, God bless you.

Monday, March 15, 2004 10:29 AM CST

Day +34

Let us put a protein kick into prospective for you. Katja ate 16 pieces of bacon yesterday. She also had chicken. When she decides to eat, she loves her protein. We cannot wait to get the doctors reaction today. Katja's WBC is still 400 today, we are so happy it is holding. Maybe tomorrow we will see 500. Her lab values look great, except the ALT and one weird creatinine value that is three times greater than yesterday. I am sure it was misreported or it is completely wrong. We try not to get excited about one lab value. We need to see a trend before there is cause for concern or excitement. That is all for now.

Sunday, March 14, 2004 8:40 PM CST

Day +33

400 white count!!! Could this possibly be a sign it is on the rise? We are very happy about it. Katja's weight is on the rise again, and with the rise in water weight is also a rise in blood pressure. She has needed extra blood pressure medication today :( This will work itself out as soon as her counts rise more.

We have lost another person to the complications of transplant. We usually do not talk about the losses we have here, but it is becoming overwhelming. We have lost three that we have met since we have been here and many other children from caringbridge sites we follow. We grieve for the children, the families, and we grieve for our own loss.

Saturday, March 13, 2004 6:55 PM CST

Day +32

Katja's white count has been steady at 0.3 (300) for three days now. She is off the tpn (nutrition) since Monday night, the eating is so-so but we're determined to keep the yellow bags out of this room for good. She's definitely protein loading again, eating mostly meat and beans and nuts, she just needs to drink more and keep at it. Knock on wood, things are pleasantly boring but we anxiously wait until we can leave for the Ronald McDonald house.

Keep us and our neighbors in your prayers, even though boring for us this place houses many tragedies as well as miracles.

God Bless you.

Thursday, March 11, 2004 5:15 PM CST

Day +30

Things are going well. Katja's WBC is 300 today, let's hope it stays there or starts rising. Her Creatinine is almost normal, so that has improved greatly since taking her off TPN. Her weight is also normal today. They are decreasing the lasix once again, but this time I think she will not need it. Unfortunately, her ALT is getting high again along with her Bilirubin. Once again, they will monitor it and likely stop the antifungal, Fluconazole, if it gets any higher (which it will). Things are moving in the right direction today, Thank you God.

Wednesday, March 10, 2004 6:56 PM CST

Day +29

We found out more, but not much more. Her bone marrow sample was very small, so they are guessing the cellularity is around 5 percent. In the marrow, she has precursors for white cells, precursors for red cells, but no precursors for platelets. Not big surprises since platelets are the last blood product to recover. We still have no idea how much longer this process will take, but we would guess another couple of weeks. We also have no idea when things do grow, if she will get GVHD (graft vs. host disease). GVHD can affect the skin, gut, liver, kidney, or any major organ. Typically, cord blood transplant have mild acute GVHD, but it can be life threatening. The experts theorize that a little GVH is a good thing, because it may contribute to Graft vs. Leukemia. Graft vs. Leukemia is a wonderful thing to have. Katja did not have GVHD last transplant, but did seem to have Graft vs. Leukemia. Graft vs. Leukemia is the only logical explanation why Katja was able to keep her cancer at bay and get strong enough to have a second transplant.
Katja is still at a 200 white blood count, not a big surprise after hearing the bone marrow biopsy results. Her weight has come down a bit since removing her from TPN and she is more willing to eating new (old) things.

Tuesday, March 9, 2004 5:06 PM CST

Day +28

Katja came out of her biopsy well. She immediately said she was hungry and ate frosting off a brownie and hot chocolate. Propofol (anesthesia) always helps kick start her hunger.

We asked the doctor to hold her TPN for a few days starting last night to see how she will do on her own. Plus, we knew the Propofol would help get her eating a bit. We also thought it would help her rising Creatinine. After six hours off TPN her Creatinine dropped over a tenth (.14 to be exact). Of course, the doctor doesn't think it is related, but we know better.

We have some preliminary news on the aspirate from today. The pathologist does not believe there are any leukemia cells. They are seeing cells that are pre-neutrophils (the white cells that fight infection) or precursors to white cells. That means it will probably be a while before the real stuff grows. The docs were happy that they were able to get that information just from the aspirate. More information will be in the actual marrow.
We may know more tomorrow, but likely not the actual cellularity or how much is donor.

We are a little more relieved today and hopefully tomorrow will bring us more good news.

Thank you God for this gift.

Monday, March 8, 2004 9:19 AM CST

Day +27

Well, we didn't make it out of here on day 27 like last time. In fact, we still do not see the end in sight. Her white count is still 200. It is so frustrating to see the same thing every day. Now, we are starting to worry that nothing is growing in her bone marrow. Tomorrow's biopsy will tell us what is going on. Of course, it will take several days to a week to get all the answers. More waiting, and waiting, and waiting…

This weekend, Aaron brought Katja’s stationary bike to the hospital to get her exercising more. We bought it last transplant after Katja was discharged. We are hoping her getting up and doing something will jump start the counts to begin rising. At this point, we will try anything.

Katja is still showing improvement with eating and drinking; more so with drinking. Last night she actually ate “chicken on the bone” AKA a drumstick. Most of the time she says she is not hungry, but when we say she needs to eat to get out of here, she quickly figures out something she is willing to try.

The little good news we have is her AST is almost normal and her ALT is less than two time the normal value. It has come down a considerable amount since last Monday. But now her creatinine and bilirubin are creeping higher. Her kidneys are working hard to get the extra fluid off of her, but most of the fluid leaks out of her veins. You cannot get extra fluid off unless it is in the veins. This will improve when the counts start recovering. Yes, it is such a vicious cycle.

You can probably figure out what to pray for, thank you for your continued prayers.

Sunday, March 7, 2004 8:00 PM CST

Day +26

Sigh, the white count came back to 0.2 today. We weren't asking for much, just a slow but steady rise. Oh well, we'll see what tomorrow brings. This is so frustrating because Kat is doing so extremely well, is in good spirits and is active constantly. It's really hard to keep her busy enough to satisfy her, she's so limited by the pumps. We need her to get unhooked and out of here ASAP so she can get back to waiting on herself a little bit. Otherwise, no real news to report here.

Saturday, March 6, 2004 8:30 PM CST

Day +25

Woo Hoo, Katja has a 0.3 white count. No great bump, but we'll take anything at this point. One more step toward getting out of here. She continues to be playful and artistic, we're slowly decorating the room with her artwork. Still needing platelets daily or more, still eating nibbles of this n that. The main source of calories is still Hazelnut coffee with milk - but not too weak on the coffee.

Our goals this week...more food, more white cells and a good result from the bone marrow biopsy on Tuesday. We really want (and need) to get out of the hospital soon.

Love, the Sufka family.

:::New pictures:::

Thursday, March 4, 2004 9:27 PM CST

Day +23

Absolutely nothing has changed with her labs. She is drinking more, which is nice. Now she is not on as much fluid. She is not dropping her weight though. She looks so good; we wish we had the counts to leave this place. This is surely a lesson in patience and tolerance.

Pastor Larry visited today. It was so nice for him to say a special pray for Katja and then say a pray for all the children in this place. I am sure the other families appreciate the extra prayers.

Good night and God bless.

Wednesday, March 3, 2004 5:24 PM CST

Day +22

Things are a bit better. Katja's white count is the same, but at least it has not gone down in the past three days. Her liver functions, ALT and AST, are both down a bit since removing the Fluconazole. She will be starting a lower volume of TPN tonight and it is not soon enough, because her weight is still creeping up. Her line is drawing better after they used TPA (it's like liquid Drano for catheters). Most improved is her spirit. She is bored of this place and is getting sick of seeing the same faces every day. She desperately wants to play with other people. We can't wait until her counts are high enough to go walk out in the halls. Any change will be welcome.

Katja is trying to keep herself entertained by drawing, writing, and putting together puzzles. She also plays with Barbie’s, Pollys and toy animals. Her drawing has improved greatly over the last few days; we will post some pictures this weekend of her newest artwork.

All of the prayers for Katja are being heard. We want to thank all of you for your support and signing in on our guest book, we feel more in touch with the world when reading your entries. We may not e-mail back or respond to many of the entries, but know how much we appreciate knowing you care.

Tuesday, March 2, 2004 5:15 PM CST

Day 21

Things seem better today, even though nothing has really changed. Maybe it is because Katja ate some Fruity Pebbles last night around 11:00 p.m. and kept it down. Because she is showing interest in food, the doctors are going to cut back on her TPN and see how she does with eating. Cutting back on the TPN will probably resolve several other issues she is having. Hopefully everything will fall into place.

After talking to the cord blood transplant expert today, I am feeling a little better about her counts taking there sweet time. Apparently, the average time for counts to start going up is 23 days. We have never experienced being average, but we can't expect Katja to always be ahead of the game.

Katja just explained that her tongue doesn't taste food, but she tastes it going down her throat. So maybe we can convince her that she has to chew some food and swallow to get some pleasure from it.

Katja’s white blood count is 200 again today, two days in a row. Maybe this is the beginning of the trend upward. We did find out today that her bone marrow biopsy will either be this Thursday or next Tuesday. They can at least see what is going on in the marrow. Katja is now needing platelet transfusions two times a day. We expected this, but we hope those new cells start developing soon.

Monday, March 1, 2004 4:13 PM CST

Day +20

Today, many things decided to go wrong. Katja's AST and ALT (cellular function of the liver and heart) levels are three to four times the normal lab values. This is likely caused by her anti-fungal medication, Fluconazole. The doctors decided to DC the medication, so now she has no protection against fungus. Let hope those white counts increase SOON. Her WBC is still on the roller coaster and is still only 200. Her weight is back up and is not responding to the Lasix. Tonight her Lasix will be increased again. Oh, almost forgot, her line is not drawing well either. What can we say... it's Monday.

The good news is she is showing more interest in food. She is more willing to try things and will eat a small amount of whatever tastes "good." Pray tomorrow is better.

Saturday, February 28, 2004 8:25 PM CST

Day + 18

Katja continues to do well. She is trying to drink more (mostly coffee or cappuccino) and she tried some fish tonight. We will take anything! Her fluid overload crept back up again, so we are back to Lasix three times a day. The good news is her blood pressure is finally stabilized with the oral meds, no more IV every three hours. Her white count is back to 200 and maybe it will rise tomorrow. Keep your fingers crossed :) She finished her 100 piece puzzle this afternoon. It probably took her an hour total. She is such an amazing child.

Friday, February 27, 2004 4:15 PM CST

Day +17

Still no rise in the white blood count. Okay, enough bad news.
Katja is doing great. Her blood pressure was at her normal level during the night and she did not need the IV medication. Her weight stayed stable, even without the evening dose of lasix. She is asking for food again. She wanted fluffy buttermilk biscuits. After going to the ends of the earth to get them and bake them, she tried one bite. She said the tasted horrible and began crying. After going through a list of possible alternatives, she decided to try hot chocolate...SCORE. She drank 9 whole ounces. We couldn't be happier with her progress. Well, okay, maybe a little happier if her white count was also rising. Maybe tomorrow will bring us more to talk about.

Thursday, February 26, 2004 8:36 PM CST

Day +16

Katja is doing so much better today. She looks great and has more energy again. She is putting together a 100 piece puzzle right now (and they say you have a hard time concentrating when you have a transplant). Her sense of humor is back and she is giving the doctor a hard time.

Katja's blood pressure has been stable all day today. We will likely remove the IV medication soon. Her weight is also down. She was able to skip her evening dose of Lasix (no changing wet dippers until midnight tonight). We played a game of Chutes and Ladders. She also did craft projects. What a difference a day makes.

The only bummer is her white count dropped again. We are not worried about it, but wish we could get out of here.

Everyone, please pray for an increase in her white counts.

Wednesday, February 25, 2004 8:37 PM CST

Day +15

We are having a gloomy day, just tired and blah. It could be related to removing Katja from the Dilaudid drip. She seems to have a few days of coming down and feeling sensitive, moody, and just plain icky. Hopefully her spirit will pick up again tomorrow and things will start improving from there. She does have a white count of 0.2 again, so we hope it continues to improve every day.

Katja is now on Lasix three times a day. We are vigilant about keeping the water weight off to avoid the problems that follow fluid overload. Hopefully her capillaries will stop leaking and her kidney can do its job the right way again. This is so common this stage in the game, but we just wish it would resolve itself soon. The extra fluid doesn’t help her blood pressure issue either. Anyways, it sounds like a broken record, but we will take it. One day closer to discharge!

Tuesday, February 24, 2004 10:15 PM CST

Day +14 (and a half)

More calm times today, just the usual platelets and the now unfortunately familiar blood pressure issues. Katja is now taking two oral medicines in addition to the IV every 3 hours (and the under the tongue Nifedipine several times daily) and her pressures still waffle all over the board. We just really need to get this figured out and start taking some of the meds away - it doesn't seem that anything has kicked in yet. She is off the Vancomycin and Tobramycin now and still (knock wood) fever free. Unfortunately, the white count dropped back to the 0.1 today. It's not unusual to see this bounce though, we hope for 0.3 or more tomorrow.

One new fear issue for us...some of our new friends here on 4A are no longer our neighbors on 4A. They are being farmed out to 5B (the hem/onc floor). Katja is telling everyone that "there's no way we are leaving this room" until we leave for good. It's funny that they won't let you switch rooms for any good or bad reason here, but now it's ok to make people leave the unit altogether??

Thanks for checking in.
We can't wait to report even better news in the near future. God Bless you all.

Monday, February 23, 2004 11:06 AM CST

Day + 13

Yesterday was exactly like the two days before. Nothing changed except her weight.

Today, she has a white count of 200, Hurray! If we could just get the extra fluid off of her and get her blood pressure stabilized, then she would have no other problems. Now that her white count is on the rise, we hope to start tapering off the pain medication. She is on such a low dose and has only needed one bump a day at most. Oh, I forgot the other problem, eating of course. She probably would eat if things tasted good, but everything taste awful to the girl. As soon as the pain in her throat is gone, we will probably force the issue a bit more. We think she will be motivated to get out of here as soon as possible. She understands things better this time and wants to go to live at the Ronald McDonald House, so she may be more likely to start eating.

Last transplant she was discharged on day + 27. Will Katja be able to beat the record? We are half way. Pray that everything continues to go as uneventful as they are right now.

Saturday, February 21, 2004 11:48 PM CST

Day +11
Saturday was much like Friday, up and down. Katja is up in fluid weight again. New doctor on the unit this week and of course everything changes. We have to keep pushing the idea of keeping the fluid weight down, giving lasix often. They don't seem to think that 1 1/2 pound weight gain a day is anything to worry about. But, string a few of those together and Kat would end up having trouble breathing, have low Potassium etc etc. She continues to ask for food, but not want to actually eat. We're sure everything tastes awful to her, plus her throat really hurts. She continues to be on a very low amount of the dilaudid which works very well - again, something we have to prove to the staff (like we don't know exactly what does and doesn't work for our girl). We've got our permanent room at the Ronald McDonald house, and it's exactly the same room as last time, just two floors down. Kat probably won't even think it's a different room at all. We can't wait to get there!!
Thanks for checking in, God Bless you all.

Friday, February 20, 2004 12:37 AM CST

Day 10

Last night ended on a good note. At around 11:30 p.m., Katja said she was hungry and wanted some food. After going through every possible choice, she decided on cereal. She didn't eat it, but she was thinking about it. She did take a drink of milk, which is an improvement. Then she asked for a jelly sandwhich. By the time it was ready, she was too tired to eat. So close.

Today, she is a little blue. She is a little puffy and her weight is up for the first time. We hope the Doctor will order one dose of Lasix to get the extra weight off and she will probably feel better.

Katja's white count is still 100. We will expect that it will be on the rise over the next few days. We are so close to getting past the time when things usually get really bad. On good day at a time.

Update:
Katja ate a square of life cereal, Yeah. She finally got lasix and looks less puffy. Her mood improved also. She hasn't had a fever in over a day. Things continue to look good.
Thanks for checking in on us.

Thursday, February 19, 2004 10:15 PM CST

Update: After waking up at 1:30 p.m., Ms. Katja had a good day. The only problem today was the blood pressure thing. She is currently busy playing Polly Pockets and doesn't look like she's ready to call it a night. We are so blessed. She continues to amaze us.


Thursday, February 19, 2004 11:25 AM CST

Day 9

The saga continued last evening. Katja finally finished her Vanco after 2 1/2 hours. I began reminding the nurse to give Katja her Cephtaz (for almost three hours). Katja first got her platelets, and then her Cephtaz started around 9:30 p.m. Within five minutes, her body was covered in hives. The Cephtaz was stopped and added to her allergy list. The resident was then scrambling to figure out which antibiotic to start to cover any possible Gram negative bugs. They decided to try Tobramycin, one of Katja's questionable allergy drugs. By this time, it was 10:30 p.m. They did a post platelet count (after reminding the nurse) and her platelets were still too low, so they ordered more platelets. Katja was given the max amount of premeds for the next round of drugs. She got platelets, Vanco, and Tobra in that order starting at midnight. She tolerated all three, YEAH.

We found out this morning that the Gram positive is a Coag Negative Staff Epi infection, not what we wanted to hear. She lost three of her Hickman's three years ago due to the same infection (it is a plastic born infection). Thankfully, they did find it sensitive to Vanco and Tobra. So, Katja is at least on the right drugs. Let’s pray the Vanco wipes it out of her lines and that it never returns.

The sweet pea slept through the night and is still sleeping (its noon). She continues to have occasional high blood pressure and the doctors keep increasing the dose. She hasn’t had a fever since 4:00 p.m. yesterday. Keep your fingers crossed. Her white count is still 100.

Even with all of these expected set backs, Katja is still doing remarkably well. We have to put everything into perspective. Our perspective is going to be very different than the average person with everyday problems, which may be hard for some to understand.

Wednesday, February 18, 2004 6:04 PM CST

UPDATE:
When it rains, it pours. First, she had a major reaction to her platelet transfusion minutes after it started. This of course set off a whole chain reaction which created more problems. She spiked a temp of 101 and began shaking uncontrollably. They gave her more Benedryl and Hydrocortisone to counteract the reaction. They also stopped the platelet transfusion to have her blood and the platelets checked. Her culture from last night came back POSITIVE. Both the nurse from last night and myself could not believe it. It is Gram positive, but we do not know exactly what type yet. We had to start the dreaded Vancomycin and it will be followed by Cephtaz. Only minutes after starting the Vanco, her temperature was checked and it was 103.7. We had to force her to take Tylenol to get her fever down (which took about 45 minutes). After a half an hour, it is down to 100.7, that's a huge difference. She just felt so crappy, she couldn't take a nap today. Hopefully, she will be able to sleep tonight. So, going back to the original problem, low platelets, they forgot to order more. Now we are waiting for the new platelets to arrive and get her to a safe level again.

Wednesday, February 18, 2004 10:24 AM CST

Day 8

Just like clockwork, Katja spiked a temp last evening. It was just above the magic number of 100.5. They took blood cultures and whisked us off for a chest X-ray. If you ask me, she was not acting like anyone with a bacterial or viral infection. She got Vioxx for her first line of defense to keep her temp down. We have to fight for this every time, because they are worried about how it can affect the kidneys. Our argument is Tylenol affects the liver and it has to be given every four hours; Vioxx is needed once every 24 hours and works very well for her. Not to mention, how do you expect a four-year old to take Tylenol every four hours when it burns her throat to take a drink of water!?!? Anyways, after an hour, we managed to get her to take the Vioxx and within an hour, voila, her temp was almost normal.

Her pain is being managed very well. The doctors keep saying she will probably need a higher dose, but I think Doctor Mom knows best. We've been there, done that. She is still sleeping now (almost 12 hours) which is normal for our girl. I think after 16 days, the staff finally figured out not to bug us in the morning.

Katja's white count is still 100, so that is good. No idea what her temperature is, because her aid is not at work this morning and apparently no one else can do vitals.
The nurse just took her temp after changing the battery (which has been registering low battery for two days) and her temp is still normal.

Katja is finally awake and looks really good. Hope this is another uneventful day.

Tuesday, February 17, 2004 9:43 AM CST

Day +7

Breaking news...Katja has a white count of 0.1 (100). We hope this is the start of her white count recovering.

Her mouth and throat pain continue to be an issue. The pain seems to come in waves. We started a very low dose drip of Dilaudid to stay on top of the pain. She slept through the night without needing a bump of pain meds. Her blood pressure continues to also be a problem. It is stable most of the time, then goes very high for no apparent reason. We pray they figure out the right dose of medicine soon.

Overall, she is still doing pretty good. She has bursts of energy and plays on the computer. She sometimes even dances in her bed a little. She is still keeping her temp down, so no antibiotics yet, YEAH! Her weight is stable, but she is unable to eat due to her throat hurting so bad. She does say she is hungry, which breaks our hearts. It hurts her really bad to even drink water. We expect things will get worse, before they get better.

God bless you and thank you for your continued prayers.

Monday, February 16, 2004 12:41 AM CST

Day +6 morning

Basically, we had an uneventful night and a quiet nursing staff. We love being bored. Katja still has periodic mouth pain and talks little, but then she responds very well to the dilaudid (very low amount, not constant drip). This morning, she is talking and playing a little, we are now watching Ice Age after a visit from Pastor Larry. Every thing is status quo, just needing blood and platelets as expected. We'll write more later.

God Bless you all.

Sunday, February 15, 2004 9:57 PM CST

Day +5

As expected, things turned for the worse last night. Katja has a lot of mouth and throat pain. She is needing bumps of Dilaudid to control the pain. So far it is working PRN, but we may need to look at a PCA tomorrow if the pain worsens. Thankfully, we have avoided fevers and starting all the antibiotics that follow.

The next two weeks should be the most difficult time for Katja. We pray that it goes as uneventful as possible.

Saturday, February 14, 2004 1:56 PM CST

Day +4

Katja is doing awesome! The doctors are amazed. She is eating a little, mostly snacking, but we will take it. She is also drinking coffee. Yes coffee, it is kinda hard to tell a child that has had enough toxins dumped into her to run a power plant that coffee is bad for you. She is busy playing Polly Pockets and singing top forty songs. She also is talking on the phone (see the new photo in the album).

Katja's blood pressure has gone up again, but they will just adjust her medicine. They started her out on a very low dose, so there is room to increase.

Katja' says she is feeling good and wishes Emma could come over. She has valentines for everyone. Happy Valentine's Day!.

Friday, February 13, 2004 4:03 PM CST

Day +3

Nothing remarkable to report. Katja seems to be doing better today than yesterday. She woke up having a small reaction to her platelet transfusion. She has never reacted before, but there is a first for everything. On top of it, she did not get a bump from the transfusion and is getting another one now.

As suspected, Katja will be starting TPN tonight. The doctor is doing a great job of listening to our concerns and is going to start her on TPN without the Lipids to see how she does. They will add the Lipids in a few days and if she seems to have more problems, they will know how to adjust things. They are also going to give a more concentrated (less fluid with the needed nutrition) amount to start and try to prevent fluid overload. Her nutrition levels are fine, a little low, but nothing to be concerned with. We feel things are much more proactive this time.

Keep your fingers crossed that everything continues to go smoothly.

Happy Valentines day everyone!

Thursday, February 12, 2004 7:50 PM CST

Day +2

Katja is not doing as well as yesterday. Her blood pressure continued to be high all afternoon and evening despite using two different types of medication. She was switched to an IV form this afternoon and is finally within an acceptable range. She slept a lot today and has not eaten much of anything. She seems to be losing interest in food very quickly. She will likely be put on IV nutrition (TPN) very soon. Along with TPN comes stomach pain, no desire to eat, nausea, and probable fluid overload. We are not looking forward to this part of the process.


God’s blessing everyone.

Wednesday, February 11, 2004 3:40 PM CST

Day + 1

Katja is doing very well overall. She gave her doctors a big surprise when they walked in this afternoon. She was eating an Arby's roast beef sandwich! I tried to convince her that she needs to eat and thought her mouth must still be sore, so I offered the usual soft foods like a Popsicle or sherbet. To my surprise, she asked for beef jerky. She tried some, but decided it is too hard and spicy. She agreed to a roast beef sandwich. It was great to hear her proclaim, “I’m starving!” before it came. She ate about 1/4 of a king size sandwich. What a blessing. The longer we can keep her off TPN the better. One day at a time.

The only bad thing going on is her blood pressure. She has had elevated blood pressure twice since transplant, but is responding well to medication. We hope this is temporary, but could just be one thing we cannot avoid this time around.

We suspect the next four days will be uneventful, but around day +5 through +14 is when we will likely see fluid retention and all the complications associated with it, but we have a plan to keep her dry this time. Then the graft will start doing it’s job.

Keep praying, it is working great so far!

Tuesday, February 10, 2004 3:36 PM CST

Day 0

Katja's new second birthday!! Her transplant began at 2:30 p.m. CST. She did awesome this time. Last time, if you remember, she threw up immediately as it started and never stopped. This time, she asked, “is this the bad blood?” It’s hard for her to understand that this is the blood that will help her heal. She just remembers getting so violently sick. She did not throw up during the transplant, but did a small amount about a half hour after. She seems to be doing well now. Katja was able to watch The Lion King 1 ½ during the transplant, which helped distract her from the smell and taste. Now she is busy playing trivia after the movie. What a trooper.

Her rash from the ATG is already disappearing, but it could take a few more days to completely resolve. She is complaining of a sore mouth and throat and we are suspicious it’s a fungal infection. They did test for yeast today, so hopefully they can get her something to help with the mouth problem.

Now the big question is will she keep eating and when will the white counts recover.

Thank you to everyone who prayed for Katja today and added her to pray chains. God will hear your prayers.

Monday, February 9, 2004 10:10 AM CST

Day - 1

Tomorrow is the big day. Katja had one bad day so far. She had chills, hot flashes, then a fever. Thankfully things turned around by the late evening and the doctors decided this was indeed a reaction to the Cytoxan and ATG and did not start her on antibiotics. She seemed to tolerate things better yesterday. Now, she has a weird rash on her body. This is likely from the ATG. We have about eight hours left of the ATG and one new chemo today.

Her platelets have dropped to the point of needing a transfusion. It has been so nice to not get platelet transfusions the past three weeks. But now, she will likely need them daily or even two times per day. They will not recover until well after transplant, because they are always the last thing to recover. Usually white cells recover, followed by red cells, then platelets.

The next two to three weeks are when Katja will have absolutely no defense against bacteria and viruses. We will not be allowing visitors due to the cold and flu season and because people can carry things in on coats and shoes too, not just hands. We also ask that people do not send stuffed animals, perishable foods, or anything that cannot be disinfected. We need to keep Katja as safe as possible. She will also likely be feeling puny and usually doesn’t care to socialize.

Please pray this transplant is successful and she recovers in the next three weeks without major complications. So many things can go wrong, so pray all her organs keep working, that she does get serious graft-vs.-host disease, or anything that will jeopardize her health and recovery.

*Update: The transplant time is 2:00 p.m. Please say a pray tomorrow between 2:00 and 3:00 p.m.

Saturday, February 7, 2004 3:40 PM CST

As we thought, this new chemo and drug has hit Katja like a freight train. Within hours of the induction, she began feeling hot and vomiting. She can not get comfortable enough to take a nap and only sleeps for about five minutes at a time before feeling sick again. These are going to be a long few days.

Friday, February 6, 2004 7:34 PM

Wow, time flies when you’re having fun. Yes, we still have a sense of humor, even if it is not in good taste. We finally got a computer in the room, only two days later than promised. Katja continues to do quite well so far. She is full of P & V, pretty demanding, and acting like a normal four-year old. We have the feeling all of this will change tomorrow with the start of the new chemotherapies. The next two, ATG and Cytoxan, have nasty side effects. She had Cytoxan before the first transplant, so we are a little familiar with it.

Katja had a big wish come true. After two years, six months and three days of asking for a baby brother, she found out yesterday that the baby will indeed be a baby brother. She is busy telling everyone who walks in the room about the wonderful news. Her second wish is a cure for her cancer; we pray that one comes true for her too. Her third wish is for a Dalmatian puppy (we hope that one does not come true). We think two out of three isn’t bad.

Please pray that the next three days have minimal side effects, that it wipes out her bone marrow and wipes out her immune system so the new cord blood can engraft and cure Katja of cancer forever.

Tuesday, February 3, 2004 11:14 AM CST

Wow, time sure does fly right now. We spent our last few days at home preparing for the admission but also just enjoying some normalcy. Katja was in some pain and moving very strange because of the new Hickman placement and dressing they used. It is now just under her collarbone on the left side so it is more of a problem with arm/shoulder movements and things as simple as picking her up by the armpits. After the second day, she had improved and was using her arm and moving her neck more. By Monday, she seemed her usual self except for being a little more sensitive to any touching near her neck/chest.

**The Hickman works great, no more standing on her head to get labs.

Admission went fairly smoothly, I guess. We were almost 2 hours late with the traffic/weather issues and saw numerous cars in the ditches. Still, when we arrived at Fairview, it seemed that no one anticipated our arrival. It took 2 hours to get vitals, almost 9 hours to get a bed in the room. As usual, we talk and talk about how we want things done but end up with the very problems we are trying to avoid. It's nothing terrible, just the day to day garbage of being at the mercy of healthcare staff and of living in a hospital room. The room is great, however. It is very big and actually organized efficiently. Our room last time was about the same size but organized poorly. We are in a corner and away from the nurses' station (good to avoid hearing all the chatter of night nurses and shift changes).

We continue to handle every little thing that pops up, it seems no amount of preparation can cover everything. Katja is in good spirits, is very playful and energetic. We know that won't last too long.

Of course, we are going to have VERY limited visitation. We greatly appreciate everyone's support, in every form it's given. Things are definitely different this time around but we'll manage with God's help and yours.

Thank you all and God's Blessings on you.

*Update: Katja has already completed two doses of her first chemo, Busulfan. She seems to be doing well and is still "hungry" and eating. So far so good.

Saturday, January 31, 2004 8:27 AM CST

Yesterday was a long day. We had the exit interview in the morning before surgery. We learned all about Katja’s new chemotherapy regime. We found out all her organ functions are doing great, well within the normal range. The result of the problem virus testing was negative. They basically explained it is fifths disease. Of course they didn’t call it that in the first place. The only bad result is that she is positive for CMV, another virus in the blood. We will find out Monday if she has the antigens for it or not.

So, the plan has changed for the final time. Katja will be admitted Monday, February 2 (day – 8). She will have the 5 of 6 cord blood transplant on Tuesday, February 10 (day – 0). After Tuesday, we start counting days in the positive. She will likely be staying in the Minneapolis area for 100 days. Last time, she breezed (I say this in jest) through the process and was home 20 days early, just before her fourth birthday. We do not expect things to go as well as last time. She has had so much insult to her little body and even though things look good now, we never know when she will hit the breaking point. We pray that she will continue to amazes us with her resiliency and prove everyone wrong.

Yesterday’s surgery went less than smooth. The doctor first tried to rewire the Hickman through the same vein and had a road blood at her neck. Then she tried to use the old vein using a new incision, only to have the vein collapse. So, the last attempt was using and MRV and place it in a new vein. Three hours later, she was in recovery. Considering they started an hour late, the process took six hours from start to finish. Then we asked for a post CBC to check platelet and Hemoglobin levels. Her platelets were fine, but her Hemoglobin is nearing the level for transfusion. She always, and we mean always, drops levels of Hemoglobin quickly after any type of procedure. We asked that she be transfused to not delay the inevitable. Well, of course, the doctor started to worry that she was bleeding, so we had to stay two more hours to have another CBC done. The Hemoglobin went up a bit, so we went home at 8:30 p.m. without having a transfusion. What a nightmare and yet so expected by the surgery department at Fairview.

Although this entry is a mouthful, this is what a typical day looks like, and we are only posting the highlights. Things get pretty busy when Katja is inpatient and there is not much leisure time to go onto the computer. Most future entries will be short and to the point.

Pray hard that she is able to endure the next round of chemo, that her transplant takes and she begins recovering, and that she has minimal complications from the transplant.

Tuesday, January 27, 2004 9:42 AM CST

Things have been delayed, which is mostly a good thing. The bad thing is her Hickman (central line) needs to be replaced. The reason is she grew too much :) The line has moved about three inches out of the original site. We need it placed back in place with some growing room, so we can keep it another year. She has the procedure on Friday.

Katja will be admitted on Sunday (day -8) and her transplant will be Monday, February 9 (day 0). This has delayed things by five days, but we are taking full advantage of being at home. This will give her more time to recover from the last round of chemo and continue to gain the weight back she lost during the last admission to the hospital.

She has completed her work-up at the U and almost everything looks good. She did test positive for a virus that can surpress her bone marrow. It mostly affects the production of red blood cells. Another test showed that she is producing red cells, so it is hard to say where the virus is in it life cycle or how it will affect her during transplant. We really do not have all the results and will not find out until Friday at our exit conference with her doctor.

Keep Katja in your prayers as we get closer to helping her win the fight with cancer.

Wednesday, January 21, 2004 8:40 AM CST

We have a plan. Katja will be admitted to Fairview University Hospital on Tuesday, January 27, day -8. She will begin her preparatory chemo Wednesday. No radiation this time, but very different chemo. We do not know what to expect. February 4, day 0, is transplant day.

Katja continues to do very well. Her counts are recovering and she is eating enough to put some weight back on. Yesterday, we began her work-up at the U. She would tell you that she had a chest X-ray, echo, and EKG. Not to mention, they took 50 ml of blood for all the blood work. She did so well with all the tests. She is such a brave 4-year old. Monday, she will have a CT scan of her head and chest. Her line has been giving us a problem since June, so they are also going to put dye in her line to see if they can see why it never wants to draw. They will do a more thorough test of her kidney function too. Tuesday, we have an exit interview with the Doctor to hear all the results, then Katja is admitted.

Friday, January 16, 2004 7:37 PM CST

Still at home, still enjoying every minute of it. Katja's biopsy yesterday went very well - as is usual for Children's in the short stay area. Something about the anesthetic makes her very hungry which is an added bonus. The preliminary results from the aspirate (liquid bone marrow) were very promising with only 1.2 percent blasts and even those weren't for sure leukemia. We haven't heard back about the actual biopsy results yet...fingers crossed.

We have an appointment with Fairview on Tuesday to start the process of pre-BMT evaluation. THANK YOU GOD, Katja will NOT be having a bone marrow biopsy there this time around since they already have a baseline and seem to have accepted results from Children's!!! We don't know anything as yet about the timeline for admission, what treatment will be given, or when the transplant will be.

Thanks for sticking with us.

God Bless you all.

*UPDATE: Her doctor just phoned with the bone marrow results. They found 34 cells out of 100,000 with her leukemia markers (that is .034 percent). We can call it remission.

You may see some duplicate entries from both Aaron and I. The refresh button doesn't always do the job, so you are getting the same messages twice.

Friday, January 16, 2004 8:07 AM CST

Katja's biopsy went well yesterday. We stayed for packed cells and found out preliminary results. Her doctor reported that they found 1.2 percent blast in her aspirate. We will know the marrow results by 4 p.m. today. We also found out that we start the outpatient work-up week starting Tuesday. That means she will either be admitted around next weekend or the following week sometime, but we won’t know until Tuesday.

Katja is doing well overall. Her ANC is low, so we still need to be very careful not to expose her to any infectious disease.

Keep praying for us during the long road we will travel.

Tuesday, January 13, 2004 3:45 PM CST

YES, WE ARE HOME! (And yes, we are screaming!) Katja never ceases to amaze us. We are just so incredibly proud of her right now; we are bursting at the seams. She probably could have come home yesterday, but the doctor wanted to see how she would do one more day without anything hooked up to her. She got platelets and her last dose of GCSF and we were off. Katja has her next bone marrow biopsy scheduled for Thursday morning, we should know preliminary results that afternoon and official results on Friday. By Monday, we should have a plan in place for our next step.

As mentioned before, Katja had two cord blood matches at the time of her first transplant. She got one of the 5/6 matched cord bloods. The other is still in the registry. It looks like that will be her second transplant option, unless something better surfaces. We assume that Fairview will move quickly, but we haven’t received any information.

We are so thankful to be home and more thankful for the continued prayers and support. Thank you all!

Sunday, January 11, 2004 4:00 PM CST

As we hoped, Katja is on the road to recovery. Her counts are on the rise, she has been removed off TPN (IV nutrition), and this is the last day of antibiotics and anti-fungal medication. She has been in great spirits the last few days, but has her sleep schedule a little off. The doctor is even mentioning the “H” word; we may be going home in a few days. Katja has been building up her strength by taking walks around the eight floor and we can’t help but think about the other families who have walked these halls many times before us.

We have no word on Transplant, but have been contacted by the U of M for insurance information. That at least looks like it’s going in the right direction. Children’s would like to do one more bone marrow biopsy this coming week, but we are reluctant to do it. We know that the U will require one before proceeding with a transplant, and we just do not want to have to put Katja through one this week if we have to do one next week. We hope the next time we update we will be home. Pray things continue to progress in the right direction and we can get to transplant as soon as possible.

Tuesday, January 6, 2004 3:45 PM CST

Where to start… The bone marrow biopsy confirmed the 2 percent blast, but it is in only in 2 percent cellularity. This is very good news, because 2 percent of 2 percent is not much. It looks like we are going back to Fairview for transplant. The ball is already in motion for a donor match. Last March, they found two cord blood and one human donor. We would guess that Fairview would be looking for a cord blood, because a human donor can take anywhere from six weeks to six months to secure. Time is not on our side, so we will need to move as quickly as possible. It’s hard to say when we will get word, but it looks like Katja will be at Children's Hospital for at least one more week.

Katja continues to have a new “issue” daily. It seems that it takes about three days to resolve the new issue, but there is always a new issue to replace it. We hope everything will be resolved by the weekend and no new issues arise.

Right now we are so cautiously happy. In some ways it feels like we won the lottery. Two weeks ago we didn’t think Katja had much of a chance to get to a second transplant. Now we could be there in two weeks. Katja is not going to give up without a fight, but we know the next six months to a year are going to be crucial for her future and her cure.

God bless everyone who has stuck by us through all of this and continue to pray for Katja and our family.

Tuesday, January 6, 2004 3:38 PM CST

Things continue to be a bit rocky day to day, but good overall. The final report on the bone marrow itself was that it was only 2% cellular (almost empty) and that only 2% of the cells were blasts. That makes, what, 0.04% right now? Again, that is preliminary and it's more important to see what grows back. Our doc has made some initial contact again with the bone marrow transplant people, they might be starting to check the registry now. We're not sure if Katja will go directly to transplant, or if we'll have a short break in between.

Katja continues to have moderate to poor oxygen saturation and has needed to wear an oxygen canula (not an easy thing to convince her of). She is having roving pains mainly in her joints, we think as a result of GCS-F (hormone to help regrow the blood counts faster) but the docs don't agree. She's still amazing everyone on at least a daily basis, has been up and around some though not having any interest in food regularly.

Keep up the prayers, we'll let you all know as things develop.

God's Blessings

Friday, January 2, 2004 0:31 AM CST

We hope you all had a great New Year's Eve and Day. Katja is about the same overall, just getting too much fluid (as usual for her with the IV nutrition). She got a full haircut today, down to a nice spiky buzz cut to keep it from falling all over her face and back etc. Nothing really new to report.

Please say a prayer for Katja's Grampa Rob who just had a major emergency surgery; it went well as of our report at 3am. This is totally out of the blue, he was in Park Rapids on vacation and the surgery was done there. Will report more as we learn more about his condition.

Thank you and God Bless.

***New Pictures Added today***

Wednesday, December 31, 2003 3:28 PM CST

Well, it's been a very busy day to end the year. Katja had a bone marrow biopsy (it wasn't scheduled until yesterday) this morning. They did it in the OR instead of the short stay, so most of the same issues arose with anesthesia and agitation. While under, she had a CT scan of her head and abdomen, and an ENT doctor looked into her nose for signs of a fungal infection. The nose looked fine, the CT scan results will take a while but looked good initially.

BIG BREAKING NEWS!!!!

The initial bone marrow aspirate (fluid portion of bone marrow) only showed 2% blasts!!!! It was also very dilute, meaning not many cells at all. This is the desired result of the chemo and is surpassing our oncologists expectations. This is only a preliminary finding but very very good news at this point. She will have a repeat bone marrow by day 42 or as soon as her counts return. That test will likely guide our future and any treatments. The stomach pain is under control, now with a constant IV drip of dilaudid (morphine-like drug), and she continues to spike temps etc. She is also on IV nutrition again but trying to eat a little (strawberries right now). She is stable but far from out of the woods.

Enjoy New Year's Eve, have an extra glass of champagne for us who will be abstaining (for obvious reasons). Continue your strong and faithful prayers on our behalf and on behalf of everyone suffering with kids with cancer. Thank you all and God Bless you.

Monday, December 29, 2003 8:35 AM CST

We are definitely back in the grind. Katja has spiked temps, started having rashes from God only knows what meds, and is having nasty pain in her belly. She's a tough kid, and it hurts us to see her in pain, knowing that it must be pretty bad to exceed her normal level of pain. The pain meds are effective but do make her drowsy, and she smiles very little right now. Counts are near zero and we can expect more of this for a while. We continue to try encouraging her to eat and drink, knowing that more problems start with IV nutrition. We all need to borrow from the strength around us right now, it's a very tough time. So much for the holidays this year. Thanks for checking in and God bless you all.


I found this on another web site and thought it was appropriate for those who visit...

IT'S THE THOUGHT THAT COUNTS

Often in times of trouble
we don't know what to say,
So we choose to say nothing,
and sometimes run away.
When friends are really hurting,
we don't know what to do,
So we offer weak excuses
or say we're hurting too.

It really doesn't matter
what kind of gift we bring;
We only need to be there
if we don't bring a thing.

It truly is amazing
what a hug can do,
When heartache numbs the senses,
and friends depend on you.

There's comfort just in knowing
that you are not alone,
When tears are overflowing,
and hearts are cold as stone.

It's the loving prayers of others
that balance our accounts,
For when we measure love,
it's still the thought that counts.

By~ Clay Harrison

Thursday, December 25, 2003 3:43 PM CST

Christmas is here and we have done lots of celebrating. So far the chemo looks like its doing its job. Katja started her treatment on Thursday and by Sunday all blast in her peripheral blood was gone. Of course, we do not know what it is doing in the bone marrow, but the cancer must be sensitive to the chemo. She had about a day and a half of feeling sick Saturday and Sunday. She was put on two antibiotics, one of which she is allergic to. By Tuesday, she was off one and Wednesday off them all. Now the only problem is high blood pressure from no known source. She looks great and is still active. Her counts have not quite bottomed out yet, they are hanging on by a thread. By this weekend, things should be at their worse.

She has enjoyed getting presents daily from friend, relatives, and the hospital. Now when people stop in, she asks them if they brought her a present. Not the typical response from a child, who usually says, “no thank you, I have enough toys.” Oh well, she deserves to be spoiled right now.

The doctors continue to be less than hopeful and have started the process for hospice in St. Cloud. We continue to be in denial and are moving forward with getting her assessed while she is at Children's Hospital, so we can get her on an IEP and meet her educational needs. Only time will tell where this journey will lead us.

We hope everyone has a Merry Christmas and are truly thankful for everything Jesus has given us.

Thursday, December 18, 2003 2:51 PM CST

Much has happened in since discharge on Tuesday. Of course, Katja spiked a temp at bedtime while at the Ronald McDonald house. Not a small one either, almost 103 degrees. We sat and tried to figure out what to do, knowing that Fairview would have us come back in and start her on yet another antibiotic. We called Children's Hospital. After explaining to the on-call Dr. the situation, we were given the clearance to stay and not go to the ER. We are so thankful for their understanding and foresight. We appreciate that they treat the patient and not just the problem. By morning, she had a completely normal temp. She also woke up to Christmas. Santa left her gifts under one of the trees at the Ronald McDonald house. She was so excited. She got just what she asked for (big surprise).

Our Pastor, Larry, came early afternoon and performed the entire Christmas service. What a special and uplifting gift. We continued the festivities with Auntie Kris and Grandma Diane coming after our nap to open more gifts. At dinnertime, Grandpa Rob and family came to give their presents and visit.

Katja had a wonderful Christmas full of family and surprises. We spent one last night at the Ronald McDonald House before being admitted to Children's Hospitals today. Katja has now been on her chemotherapy treatment for an hour and a half. You would not know by looking at her that she is so sick. Her counts look good except for low platelets and of course, 21 percent blast. Katja will get five days of chemo and then GCSF. She will have a bone marrow biopsy on day 14 and again when her ANC recovers. If we are lucky, Katja will be able to come home in three or four weeks.

We know that our friends and family will want to help us and give Katja Christmas gifts. We would ask that you not send stuffed animals due to the fact that they are more likely to carry germs and bacteria and they are not easy to clean. She would probably love getting cards. You can call us if you really want to send something and weÂ’ll help figure something out.

We hope you and yours have a Merry Christmas and weÂ’ll pray for a Christmas miracle.

Monday, December 15, 2003 10:31 PM CST

I can hardly find the right words right now. Obviously, our news today is bad, very bad. Things are worse than ever with 82% blasts in the bone marrow today. That explains the circulating 16% in the blood as well as the terrible counts lately. We are left with horrible decisions to make, basically life and death decisions. There are always options for care, but nothing ground breaking and nothing with any real level of asurity at this point. The chances right now stand at around 10 percent for getting into remission, then only another 10 or 20 percent chance with a second transplant (if she gets there). Transplants don't work at all if the patient isn't in at least partial remission.

We can not make a decision to do nothing yet. Katja still has fight left in her and still a chance. Aside from the leukemia, everything about her is in perfect condition.

Our plan right now is to transfer back to Children's, where we're more comfortable and they are better suited to handle kids. Dr. O'leary is going to come up with a plan and we'll start right away. We'll do our best to have some semblance of a Christmas this year, but it's pretty bleak.

Sunday, December 14, 2003 12:40 AM CST

Katja is still in the hospital and things went from bad to worse in a matter of days. Katja now has blast circulating in her peripheral blood. In the past two and a half years, we have never seen more than two percent in her blood work. Her blood work Friday showed fifteen percent. The pathologist believes about eight percent is her leukemia. The rest is probably either from the flu virus or her bone marrow beginning to recover. This news has us very scared and the doctors very confused. Tomorrow, we hope to have more answers. Our worst fear is that the cancer has greatly multiplied in her bone marrow and is now leaking into different areas of her body. The ironic thing to happen over the past few weeks is that her liver and kidney function have returned to the completely normal range for Fairview’s old standards. This also confuses the doctors, because the drug is expected to possibly make things worse in her liver and kidney, not better. Absolutely nothing makes any rational or scientific sense.

Katja does have an ANC of 1. We pray that her (donor) bone marrow grows back and continues to fight the leukemia. We also pray that what ever we choose to use to treat Katja is the right choice to get her into remission.

Thursday, December 11, 2003 2:37 PM CST

Katja is still in the hospital now, waiting for counts to return and running more antibiotics. She is feeling fairly well, as opposed to the rest of us. The stomach flu ran through the family quickly, Jacqui is the most recent victim. We think it may be something we caught by being in the hospital at this perfect flu time.

Katja will be in the hospital or at best at the Ronald McDonald house through the weekend as she still has no ANC. She has a biopsy scheduled for next Monday. It's anyone's guess how things will go after that but we need good results from the next biopsy.

God Bless.

Saturday, December 6, 2003 2:32 PM CST

As of last night, Katja is in Fairview 5B. She has a zero ANC and, right on schedule, started having a fever. She was started on two antibiotics and will be staying for sure over the weekend. She had a CT scan this morning and they found sinusitis throughout her head - a likely culprit for her fever. Not much else to report, we hope to get her fever free and that she has negative blood cultures. Then, we can go back home on regular oral antibiotics. We'll write more later.

Friday, December 5, 2003 1:17 PM CST

Things have changed very quickly. Katja’s platelet count took a huge nosedive over the last three days. She has been below safe levels all week, with the last two days being dangerously low for her. Katja has needed platelet transfusions Monday, Wednesday, Thursday, and today. We are not sure if she will need to be hospitalized or if we will need to bring her in both days this weekend for transfusions. Her hemoglobin took a dive too, but not as drastic. We will need to keep a close eye on that over the weekend. No word on whether this is a normal effect of the drug or if we need to worry about something else. Please pray that Katja does not begin bleeding anywhere, she does not have enough platelets to stop bleeding.

Tuesday, December 2, 2003 9:36 AM CST

Katja continues to do well. Her blood counts have dropped again with her WBC at 2,600 and her ANC at 100. When she was in Children's Hospital, she would be in isolation with an ANC of less than 200. This means we need to be very careful. She is much more susceptible to infections, which also means possible hospitalizations. The doctors are pleased with the low counts, because it suggests that the drugs are working. Her bone marrow biopsy is next week Tuesday. She will start her second round Thursday if she has shown a response to the drug. Her liver and kidney functions have both improved after a slight increase the first two weeks of taking the drug. We are very pleased with the improvement. We continue to pray the drug does its job and helps Katja get into remission, but any improvement would be a blessing.

Thursday, November 27, 2003 8:17 AM CST

Happy Thanksgiving everyone. Katja is doing well. Some of her blood counts are dropping rapidly and others are staying stable. She is finally taking her medication without a struggle. Only one more week until she is done with the first round. If her blast count improves and she shows no sign of toxicity, then she can go on to a second round. Katja’s next biopsy is December 11. We pray things improve. We are truly thankful for having Katja home with us this Thanksgiving. God bless you and your family this holiday season.

Thursday, November 27, 2003 8:17 AM CST

Happy Thanksgiving everyone. Katja is doing well. Some of her blood counts are dropping rapidly and others are staying stable. She is finally taking her medication without a struggle. Only one more week until she is done with the first round. If her blast count improves and she shows no sign of toxicity, then she can go on to a second round. Katja’s next biopsy is December 11. We pray things improve. We are truly thankful for having Katja home with us this Thanksgiving. God bless you and your family this holiday season.

Wednesday, November 19, 2003 12:47 AM CST

Katja made it through her thirty-six hour stay at the hospital without to many problems (she didn’t like the food, got sick of the constant blood draws, and did not want to have any part of having her eyes dilated for the eye exam). She is taking her drug twice a day with a bit of a fight. We hope that will get better in time. Katja also had another biopsy Tuesday as part of the protocol for the drug. After six days on the drug, her blast count is 29 percent. It is too soon to be very optimistic, but her cancer continues to be stable, which is a blessing. Her white blood count is dropping fast and she will likely become neutropenic from the drug. We will need to be more careful with visitors due to the low counts. Overall, Katja seems her usual spunky self. Pray hard for a miracle - Katja getting into remission and her donor marrow to return to 100 percent.

Wednesday, November 12, 2003 9:03 AM CST

Lots of news on our front. The University Hospital changed their levels to match Children's Hospitals, which means that Katja does qualify for the experimental drug. Her biopsy results showed 31 percent blast, so her cancer has not gotten worse. This news is nothing short of a miracle. She will start treatment tomorrow. Although getting her into remission with this drug is a long shot, we are hoping for the best. Pray that Katja gets into remission soon and has no side effects from the drug.

Tuesday, November 4, 2003 10:47 AM CST

Katja’s liver and kidney levels continue to be high, actually higher than usual. She is likely fighting a virus. She was unable to trick or treat due to a fever, but she had lots of fun handing out candy. The rest of her blood counts look good. It seems like we are getting closer to having Katja start some type of treatment. Fairview should be making a decision on changing their blood minimum/maximum levels this week. We hope they use the same levels as Children’s, because then she will qualify for the oral drug. If not, we will need to consider the new chemotherapy. Monday, we will check levels again and likely have a bone marrow biopsy on Tuesday. If she qualifies for the oral drug, we will likely start Wednesday. If not, we will likely start chemo the following Monday. The waiting is excruciating. We pray that her cancer has not gotten worse over the past three weeks. But of course, we will not know for sure until after the biopsy. Katja looks very pale and is not eating well, but seems to have lots of energy. We hope things return to normal once the virus is gone. Keep praying for Katja’s health and treatment answer.

((New Pictures Added 11-6))

Monday, October 27, 2003 5:57 PM CST

I'm sure everyone is waiting for today’s results and the new pictures. I have one and am working on the other. Katja did not qualify for the Phase 1 clinical trial (R115777) this time around, but all is not lost. Her liver enzyme is close to normal, only 8 points too high. Good is already coming from this dilemma. Her doctor and a colleague are petitioning the hospital to change the liver and kidney normal functioning range to be more agreeable with Children’s Hospital. Katja’s levels are very normal for Children’s, but slightly high at Fairview. This difference in levels has created many problems for other children when trying to qualify for studies that could cure them of leukemia. It is still possible that Katja will be able to be in the study if the hospital accepts the petition and change their levels. Her doctor will also check with the Mayo Clinic to see what their normal liver enzyme levels are and if we can transfer treatment there. The Mayo is also running the same clinical trial drug.

As Katja is nearing 6 months, other treatment options and Phase 1 clinical trials are possible. Starting next week, she will be eligible for a new chemo called Decitebine. It has been helpful in reprogramming the biology of cancerous cells from living and rapidly multiplying to dying. It also tricks abnormal cells that could become cancerous to grow into normal cells. This chemo is used in smaller doses over a longer period of time and has less toxicity or side effects. This is a 42-day cycle that is repeated three times. We can also look at a second transplant once she is in remission.

Katja continues to look and feel well, which is definitely a blessing. For once, time seems to be working with us, not against us. We continue to be hopeful that the answer is near and Katja will beat this cancer once and for all.

We are working on setting up a slide show of Katja’s Disney pictures, so please be patient, it will be worth the wait.

God bless you all!

P.S. Check out this new slideshow, hope it works!!

Friday, October 24, 2003 9:01 AM CDT

Wow, were do we start? What an amazing trip. The family stayed at a place called “Give Kids the World” and what an appropriate name. We could have spent all our time there and had just as much fun. Katja rode a pony and a horse there. They had an ice cream parlor and wanted you to eat ice cream at least three times a day! They had their own carrousel, mini golf course, video arcade, castle, boat racing, movie theater, and a train. Everything was free! Katja loved the Mayor the most. His name is Mayor Clayton and he is a Bunny! He even tucked Katja into bed on Tuesday. Mickey and Mini Mouse came to take a picture with our family.

Disney was overwhelming and magical. Katja got the "star" treatment. She went to the head of every line and met just about every Disney cartoon character. She even got on stage for the Lion King show. She got every wish she had asked for before the trip. She fed and touched dolphins, she went to a Luau, and met some of the princesses. So many things happened, it's too much to write. If fact, we extended our trip by a day, because there was so much to do and so little time to do it.

We also had some better news from the biopsy during our trip. The cancer clearly did not get worse. The results showed 32 percent blast and 100 percent normal spinal fluid. Her bone marrow is probably fighting the cancer, but will not be able to wipe it out. The bad news is she continues to have high liver enzyme results and she will likely be disqualified from the clinical trial drug study. We had a two-week window from her last bone marrow biopsy to have her liver enzymes in the normal range, but it stayed just above normal. Monday is the last possible day to qualify. Pray hard that things turn around and she will have normal liver functioning on Monday.

We have too many pictures to choose from, but will update the pictures very soon. Thank you so much for all the generosity of our family who made it possible for the Grandmothers and Godmother to join us. We are forever grateful.

Wednesday, October 15, 2003 12:52 AM CDT

Sorry we haven't updated in a while. We've been again in a holding pattern. Katja has needed platelets and blood again, the weekend of high platelets was just a fluke I guess. Katja had another bone marrow biopsy yesterday, it went as usual for Fairview with her waking up very upset and thrashing. We won't have results back for a few days. We have been working on getting into the research study, but to do that, Katja's liver and kidney function tests must be perfect! One of the values is only slightly high both Monday and yesterday but it is enough to keep her out of the study. From yesterday's biopsy, we have two weeks to get a normal value and to start the drug. Because of this window right now, we are going to do our Make a Wish trip very very soon. We will likely leave on Friday of this week and return in the middle of next week. Katja continues to be happy and playful and is doing well. She is very eager to meet Mickey Mouse and the gang. We talk often about the rides and sites around Disney - look for pictures next week!

We really need Katja's liver function to get into the normal range. Then, we need to get into this study and have a positive effect from the drug.

Thank you all for continuing to pray and help.

Monday, October 6, 2003 3:22 PM CDT

We really thought Katja was out of the woods. Her platelet counts are holding, but her bone marrow results came back much worse than expected. She is at 48 percent blast. We are having a hard time understanding how this is possible considering how great Katja looks, feels, and acts. Most of her bruising is gone and she has no other physical signs. We are now waiting to hear from the doctor at the U to find out when she will start the clinical trial drug. We need your prayers.

Friday, October 3, 2003 3:02 PM CDT

Good news?? Katja had a platelet count of over 100,000 today. We haven't seen that high of a number for over a month and a half. Do we dare to hope that her body has beaten the cancer and she is now producing her own platelets? Only time will tell. We will update again Tuesday with biopsy results. Keep praying for a miracle.

Tuesday, September 30, 2003 5:25 PM CDT

We had a very big weekend. Katja visited the Mall of America for the first time in over six months. She road every ride possible for her size and had a blast. Katja managed to not get sick from the exposure, but Dad wasn’t so lucky. We also had her pictures taken at Sadies in the MOA. As you can see from the picture above, they do an outstanding job (well it helps to have a total ham getting her picture taken too!). On Sunday, we had an impromptu Halloween costume party that was a smash.

Katja continues to need regular platelet transfusions and occasionally blood. She will have yet another bone marrow biopsy on Monday to see where things are. If her blast count is over 25 percent, then we hope to start the clinical trial drugs. We would love to find out that her blasts have disappeared, but are not very hopeful because of the continued need for platelets (which is what her specific type of AML targets) and the occasional blast that shows up in her peripheral blood work. Continue to pray for our fairy princess to fight this horrible cancer.

Monday, September 22, 2003 5:10 PM CDT

There is one error in the last journal entry. But with as confusing the information is, you will understand the mistake. One test on September 3 showed 95% donor and 5% her own bone marrow with 1% being abnormal. On September 15 the same test showed 98.5% donor and 1.5 % abnormal. If you do the math, it does not make a lot of sense, because there is approximately 11% abnormal cells in the bone marrow according to the first sample drawn. To confuse things even more, another test showed 100% donor both times. There is always a 5% margin of error.

Where do we go from here? Good question. Right now, we are planning to wait and see. We pray that the natural killer (NK) cells kick in and she has Graft vs. Leukemia (GVL). (Yes, these are real medical terms). If she is unable to wipe out the leukemia on her own and the percentage of blast (abnormal cells or leukemia) increases to 25%, she will start an experimental drug called R115777 or Tipifarnib. This drug is given for 21 days and up to three courses in the absence of disease progression or unacceptable toxicity. That is a mouthful. In layman terms, we hope it will put her in complete or partial remission. At the very least, buy us some time to look at other options.

Overall, she is doing well. She looks good, continues to eat, and has plenty of energy. Keep the prayers coming, we need them now more than ever.

Thursday, September 18, 2003 1:04 PM CDT

Our hearts are sinking again. As usual, Katja's bone marrow biopsy is very difficult to read for even the experts. They cannot say definitely what is present but it is looking more and more like a relapse of the leukemia. The "abnormal" cells from the last biopsy have increased from 3% to around 11%. Around 3% of them carry cell markers for the cancer. She still has around 92% donor cells, 8.5% of her own bone marrow has returned.

We are still hopeful that removing the marrow suppression medication will result in the graft fighting off and killing the returning cells. But, we will be having more consultation with oncologists to decide on a future course of action. There are some mainly experimental studies for different treatments available, we will need to decide which to pursue - mostly based on the toxicity and potential for success. It is very hard to be optimistic at this point, but we are trying to focus on the positives. We definitely need to buy time in case a repeat bone marrow transplant is needed. The further out from the first transplant, the better. Within the first year even, the results have not been favorable.

Katja remains the same active, happy, playful and imaginative girl everyone has grown to love. She is still not aware of what's going on but she is perceptive enough to know we are all concerned. This is all so unfair, we're shocked that anything could regrow after all she's been through.

Keep praying for us all.

Monday, September 15, 2003 8:16 PM CDT

Katja had a bone marrow aspirate and spinal tap today, but no results yet. We hope that no news is good news. We know that we will not find out anything Tuesday, because Katja’s doctor is out of the office. The earliest we will have results is Wednesday. Keep praying for the best possible results.

Friday, September 12, 2003 8:10 AM CDT

We have gotten more results and not sure how to interpret them. Katja has approximately 95% donor bone marrow and 5% her own. It is usually not a good thing for her bone marrow to start growing again. Approximately 1% showed up as abnormal in one test, but there is always the possibility of error. We have another biopsy scheduled for Monday and we assume things will either get better or worse. We pray that things get better in her bone marrow.

The good news is that she is eating well and no concerns for her nutrition anymore.

Wednesday, August 27, 2003 8:18 AM CDT

We are still on the roller coaster and taking a big ride down. Katja’s platelets continue to drop. Her weight has also decreased. We think she had a virus last week, which may have contributed to both decreases, but only time will tell. Her bone marrow biopsy is two weeks away and it takes at least a week to get results. We may not have any answers for a month. Pray that Katja’s counts increase, that she begins to eat more, and that her bone marrow biopsy results come back perfect.

Thursday, September 4, 2003 6:32 PM CDT

Good Evening all.

We are definitely breathing a little easier tonight. Only a little though. On the preliminary viewing of the bone marrow biopsy, the doctors did discover what they called "abnormal cells" but did not really describe cancerous blast cells. These were very few in number but still present. We know from prior experience that there is a normal variance in bone marrow cells in all of us, but don't want to get too relieved yet. The doctor is still leaning toward a possible viral cause for the dropping platelets/hemoglobin but further testing will be done to the bone marrow. Because the donor was male, they can check for male/female chromosomes and determine if it's hers or the donors. Then, we will get another bone marrow biopsy in a few weeks to recheck everything. We are very hopeful that there is a strong graft vs. leukemia process going on. This turns into a lifetime of bone marrow battling to prevent relapse and is the best thing we can imagine right now. We still need serious prayer and are still in the frying pan right now, but maybe we'll sleep a little easier. We'll know more by Monday. Until then, we'll continue to visit the clinic every other day for counts, blood, or platelets.

Thank you all for your concern.
God Bless.

Wednesday, September 3, 2003 11:59 PM CDT

Here we are again everyone, waiting on pins and needles for biopsy results. We were finally able to get Katja's bone marrow biopsy rescheduled for today (was supposed to be next week). We've been agonizing over the platelet drop and all the associated symptoms (bruises etc) and worrying about nosebleeds again. The procedure went well, Katja was again a trooper afterward though a little nauseous. We won't get any preliminary results until tomorrow (Thursday) at the earliest. As much as we hate to say it, a return of the leukemia is one of many possibilities this time. We don't even want to speculate because we've done that all before. All we can do is pray and ask for one single break this time. We all could use some good news, this is very fatiguing and I'm sure we're all getting depressed. Please continue to pray hard for Katja in the next day or so. We'll write when we know more...hoping it's positive next time.

Monday, September 1, 2003 8:03 AM CDT

Katja's platelets continue to drop and yesterday she needed a platelet transfusion after two months without one. Her weight has stabilized again and she is eating like a trooper. We pray that the drop in platelets is nothing more than a fluke while her body is trying to recover from the transplant.

Wednesday, August 27, 2003 8:18 AM CDT

We are still on the roller coaster and taking a big ride down. Katja’s platelets continue to drop. Her weight has also decreased. We think she had a virus last week, which may have contributed to both decreases, but only time will tell. Her bone marrow biopsy is two weeks away and it takes at least a week to get results. We may not have any answers for a month. Pray that Katja’s counts increase, that she begins to eat more, and that her bone marrow biopsy results come back perfect.

Tuesday, August 19, 2003 5:01 PM CDT

Hi everyone, everything is still the same. Nothing new or contrary to report and it's beginning to sound like a broken record.

If you haven't checked in for a while, check the past journal entries and you'll know what we mean.

God bless you all.

Saturday, August 16, 2003 9:56 AM CDT

Well, the doctor's are happy with Katja counts, but we do not share their enthusiasm. We are still concerned with her blood levels not returning to normal. She has improved greatly with eating and her weight did increase, yeah! Her nutrition level is okay too. One of these weeks we will report that everything is normal.

Katja seems so grown up. She has made a big step forward by sleeping over at Grammy’s house. As the days go by, things gradually are getting back to normal.

Please continue to pray for Katja, all the children at Fairview having a transplant, all the children at Children’s Hospital fighting cancer, and of course all the children of the world.

Wednesday, August 13, 2003 10:09 PM CDT

We are back on the roller coaster again. Katja went to her clinic appointment on Tuesday and things are so-so. The good news is her hemoglobin is staying the same, still low, but not enough to need a transfusion. The bad news is her kidney enzymes are back up again and she dropped weight. This past weekend she decided to go on a food strike. Now we are afraid she will need to go back on TPN, because her nutrition levels continue to drop. We will know more on Friday.

We are not sure who is out there reading anymore since we have not heard from others in a while. Please drop us a note. We would love to hear from you as much as you love to get updates.

Thursday, August 7, 2003 11:00 PM CDT

Katja had clinic visits on Tuesday and today. On Tuesday, things had worsened a little. All her blood counts had dropped below the normal range and her liver enzymes raised a little. We were beginning to get worried and we were convinced that she would need a blood transfusion today. But today, every thing looks great! Her blood counts are on going up again, her electrolytes are all in the normal range, and her liver and kidney enzyme levels are in the normal range. We haven’t seen lab results like this in a long time. Not to mention, she ate a normal portioned lunch too. The doctors believe the drop happened, because it usually happens in most bone marrow recipients. People who get bone marrow from a person usually see a drop around day + 60 days. They also see it in cord blood recipients, but at varying times. We pray that things continue to improve and that her +100 day bone marrow biopsy in September shows 100 % engraftment and is 100% donor.


Please pray for Priyanka who has lost her first cord blood engraftment, continues to be in critical condition, and will receive a second cord blood transplant in five days. She and her family need a miracle.

Saturday, August 2, 2003 11:01 AM CDT

It’s Katja’s 4th birthday!! She is so excited to be four that she has been dancing around the house all morning. We are so excited to have her home for her birthday. Wish her a happy birthday!

She had her normal checkup yesterday and things have improved a little. Her liver enzymes are finally in the normal range. Her kidney enzymes continue to be a little high. She may have endured some damage to her kidneys with all the chemo and radiation. The other culprit is the CSA medication she takes daily. The levels may not get in the normal range until she begins to taper off the medicine. All of her other levels that dropped are on the rise again.

Got to run. We have to get ready for a special girl's birthday party.

Tuesday, July 29, 2003 5:38 PM CDT

We have officially left the Ronald McDonald House. We are deeply grateful for having that resource available but needed to open space for more needy families. We definitely consider the Ronald McDonald charities to be more than deserving of all our support in the future.

Things are basically the same for now. Eating is slow except for brief spurts of "chowing." She throws up a few times here and there, usually after the horrible medicine. And she is enjoying being home. On the down side, her platelets have dropped steadily over the last week or so. The doctor is not yet concerned, but she peaked at 150,000 (in the normal range for once), and has drifted down to 102,000. He hopes it is just a transient thing related to this being a cord blood transplant. She is still within the normal range for patients needing transfusions but we thought we were out of those woods.

We need the prayer to continue covering the eating and now the platelet issue. We have been on eggshells since this level dropped (after steadily rising) and would like some sanity to return. We continue to ask for, but not find, good resources for what is definitely a full blown eating disorder. We would love to have a solution or at least a plan in action ASAP.

Continue to pray for Priyanka who has beaten the odds for several days beyond what was expected of her - we are thinking of her constantly. Thank you all for the continued support.

Friday, July 25, 2003 11:00 AM CDT

Katja is home! She got permission to leave for the weekend. We have not gotten the “all clear” due to some high liver and kidney enzyme levels. This is concerning because the doctors do not know the exact reason why the levels have not stabilized. It could be GVHD in the liver, from the TPN, or any number of factors. It looks like the kidney levels are elevated from one of her medications and can be lowered by giving fluids at night. Another area of concern is that her hemoglobin levels continue to gradually drop. The doctors are watching this closely, because they are concerned that her body may have developed an antibody to the packed cells. If this is the case, she will need to be on steroids for some time. If they wait to long to diagnose the problem, it could become serious enough to need a hospitalization stay.

On the bright side, Katja seems like a kid in the candy store at home. She is excited about everything… from riding her bike to drinking hot chocolate. She said she was “starved” last night, which is music to our ears. We are delighted that she is eating. In one week she will turn 4-years old. We are truly blessed.

We ask that you add another bone marrow recipient to your prayers. Priyanka received her cord blood transplant on June 20, 2003 and is in critical condition right now. We feel so much of the families pain and know they need as much support and prayer as possible.
May God bless everyone.

Tuesday, July 22, 2003 11:44 AM CDT

Good news... Katja is finally eating. She is officially off the TPN. It is looking like we’ll finally bring her home this week. If it happens, she will be home one month before we expected. She is doing great. She really seems like the old Katja again. We couldn’t be happier. We are busy trying to get packed and get back to a normal life. Katja will likely need to come to clinic twice a week for a while, and then it will decrease. We rather drive than stay at the Ronald McDonald House. Although we are grateful we could stay there, there is no place like home.

Monday, July 14, 2003 2:52 PM CDT

Hello again.

Katja continues to have trouble eating and occasionally throws fits when taking medications. She did give dad his birthday wish and started eating a little. Saturday, she at a quarter of a frozen pizza, Sunday nothing. Every day is a different story. We just carry on day by day. On the up side, the doctor actually alluded to the possibility of going home soon. He told us that the risks are little at this point, fevers and infections are always a risk. We're keeping our fingers crossed and will try to bully the doc a little. We really need to get home and end the madness!! We'll keep in touch and let everyone know what's happening.

Sunday, July 6, 2003 1:22 PM CDT

Hello everyone.

We've had no fun the last few days. After long deliberation, we decided to go ahead with the NG feeding tube so that Kat's stomach would start working again. After the stressful placement and learning how to use the pump etc, the nurse mentioned that these can come out of the stomach when vomiting. Of course, this happened the next evening and we lost the tube. We replaced it, again under a great deal of stress for Katja and us, the next day. Then, she threw it up after only 4 hours. She is still adamantly refusing to eat anything other than small sips of Pediasure. Meds are difficult to give orally. Basically, she has the worse oral aversion ever. Not what we expected with our normally robust eater. It's just been too long since she ate normally. We don't know what's next but we agree that more NG tubes would be useless and any other invasive procedure is not likely to help either.

Aside from the stomach, everything is excellent. Katja is playful and more herself. We just really need this one problem solved. Keep the praying up, nothing else has worked as yet.

More later.

God Bless.

Tuesday, July 1, 2003 2:27 PM CDT

Hello everyone. The wedding was a huge success with a beautiful ceremony and good party, food and family/friends. Katja did very well posing for many many pictures, finally hit the wall and did not have even one smile left in the tank. She pretty much thinks that she was there for the whole wedding and was ready to leave anyway. We all wish our best to Kris and Paul in Cabo San Lucas MX.

Katja tolerated her latest surgeries very well. This time, she complained of more back pain from the biopsy and had a scratchy throat after the endoscopy. No results from either as yet but we'll most definitely keep everyone posted. The last thing we want to hear is that nothing was determined from the stomach biopsies. They did tell us that her stomach is swollen and inflamed, nothing else out of the ordinary.

More later. I'll add some of out pictures of Katja in her beautiful gown with her gorgeous bald (but fuzzy) head too.

Monday, June 23, 2003 0:08 AM CDT

Hello all.

We continue to ride things out at the Ron McDon house. There is really not much change to report. Katja continues to throw up several times a day some days; some days, not at all. It has gotten to the point where we need to find out the cause. There is really no reason for the transplant or chemo/radiation to be causing this at this late stage. We are finally convinced to go ahead with an endoscopy of her stomache and are trying to get this scheduled at the same time as her prescheduled bone marrow biopsy. We really just need this one problem corrected - then she can start eating and everything will fall in line. We pray that something is found, but of course nothing serious - just something treatable. We don't know what to expect but the doctors have talked about a very localized GVHD (graft versus host disease) in the stomache. Hopefully, there is a simple treatment for whatever it is.

On an upward note, we are all excitedly planning for Kris and Paul's wedding this coming Saturday. Katja will not be in attendance but we are planning on having at least some pictures taken with her and some of the wedding party at the church - then whisk her away and out of danger. She is still at risk of getting sick from exposure and we need to be careful.

We look forward to seeing some of you at the wedding. Thank you for your continued support.

Wednesday, June 18, 2003 1:44 PM CDT

The more things change, the more things stay the same. Katja continues to do well overall. We had a small scare on Sunday when she spiked a temperature of 100. Luckily, it did not go to 100.4, the magic number when she would have to be admitted into the hospital. Her blood cultures are negative, so we do not need to start antibiotics for the mystery fever. She likely had a virus and managed to fight it off on her own. Katja is now getting platelets every third day (that’s a relief) and her other counts continue to climb. Her weight is beginning to stabilize and she is starting to eat (like a baby bird). She still complains of pain in her stomach and gets sick daily. New medications were added to stimulate hunger and decrease the nausea and vomiting. Her activity level continues to improve and she may even begin exercising on her new kid size treadmill!

Wednesday, June 18, 2003 11:37 AM CDT

Hello everyone.
Sorry it's so long between updates. Things are very stable right now. Katja is still not eating, but has started accepting very small nibbles. The throwing up is much less but still going on a little each day. She is only needing platelets every two or three days now and her white count is rising to nearly normal. Everything is slowly improving, but very slowly indeed. Thank you all for your continued prayer and well-wishes. We can't wait to see most of you at the upcoming wedding. Unfortunately, Katja won't be able to walk down the aisle or be at the reception. Most likely, we'll just get her in a few pictures then run her home.
that's about all for now.
Thanks and God's blessings.

Saturday, June 7, 2003 1:10 PM CDT

Good news from our end. The doctor reported that Katja has 100% donor engraftment and 70% of her new cells have grown. The 70% seems a little high (they expect as low as 5%) and could be a sampling error, but we’ll take it! More good news is Katja’s counts are beginning to rise on their own! We get one day off from the clinic tomorrow. We pray this trend continues. Katja now needs platelet transfusions every other day. The only thing that continues to not go so well is her lack of hunger and refusal to eat. Katja is also having “hot flashes” often, that sometimes become too overwhelming and she becomes ill. Overall all, we are incredibly grateful and feel blessed by this remarkable recovery.

Note: We put the wrong address for Ronald McDonald House. The new address is listed below. Katja received four cards today and is really excited to have mail.

Wednesday, June 4, 2003 5:45 PM CDT

Katja continues to do well. She is not eating yet, but may begin after a new medication helps her stomach to start working again. Today was the first day she did not need a platelet transfusion, Yeah! We hope this is a sign of recovery for her body making platelets. She had visitors again today and took a walk outside until it began to rain. She continues to have daily appointment at the clinic and we should know by Friday the results of the bone marrow biopsy.

Monday, June 2, 2003 4:09 PM CDT

Our first night out of the hospital was rough. Katja got sick six times and developed a rash on her legs. We were sure the doctor would admit her again the next day. We also struggled getting used to the IV medication schedule, which includes a middle of the night change. After surviving the night, Katja’s rash had disappeared and the vomiting slowed down. We then remembered that she is no longer on the IV antacid and probably wasn't ready to be off. The next night was much better.

Katja had visitors from home on Saturday evening. She was able to play with her friend, Emma, and throw stuffed animals at Jim and Jen. She had a blast. She also boogied in the game room to the CD jukebox. Katja seems to be getting stronger each day and is even fighting the oral medications less. She continues to amaze us daily. We are truly blessed.

Thursday, May 29, 2003 4:13 PM CDT

We are OUT!!!! After some bargaining, we got two of the worse tasting meds through IV for the next few days, at least to get over the ####. It took a few trips, but all our stuff is in the room here at the "mac" house. Katja is currently exploring and playing with everything in sight. She really is like a kid in a candy store!! I can't tell you how awesome it is to see her run and play, forgetting already about what she's just been through. All kids are amazing, but she really shines (as you all know already). We'll continue to update you as things progress but hope to settle into a routine and be as "normal" as we can. Again, many thanks for the consistent prayer and concern; many many thanks for everything else that has been done for us and Katja. We really couldn't do this without all of you out there.

Many blessings!

Wednesday, May 28, 2003 6:53 PM CDT

We are definitely out of here tomorrow!! Katja is doing so well with everything. Aside from being p.o'ed after the biopsy today, she has done totally fine. She is still not eating but that may change once we're in more of a home environment; we will be doing the IV nutrition at "home" at night for a while, no biggie. We will be awaiting results of the peripheral blood tests and the biopsy/aspirate in the next several days - keep praying that the bone marrow growing is NOT her own!! We'll write more from the Ronald McDonald house once we're settled and will let you all know as soon as we are sure everything is good from the biopsy.

God Bless you all!!

Monday, May 26, 2003 1:26 PM CDT

Hey folks! We're well on our way to leaving the hospital now. Katja had an incredibly busy day yesterday and played very hard with lots of energetic company. She was actually unhooked for a while and walked around the hallway playing. She still isn't eating or interested in eating yet, that's our one remaining hurdle. But, she's off most of the IV meds (and will start doing even those orally soon). The bone marrow biopsy is scheduled for Wednesday morning and will be done in the room here to avoid the surgery floor totally (after our horrendous experience there). The doctors are shooting for a Thursday discharge (Jacqui's birthday!!) and there shouldn't be any problems before then. Her white count and ANC are nearing the normal range and she is healing nicely. She looks very good and is smiling more though still getting lots of beauty rest. We'll let you all know as things develop. God bless you all.

Saturday, May 24, 2003 11:18 AM CDT

Wow! what a difference a day or two makes. Katja is now off the IV pain medication and will be taken off all the antibiotics and antifungals today. All the extra tests have come back normal or nearly so with no big worries about her heart, liver, or kidneys. The rash is close to gone and most of the extra fluid is going too. The doctor shocked us this morning talking about discharge later this week if all continues to go well!! Katja is not yet interested in leaving the room or eating, but that could change rapidly if she feels like we'll be able to go to "the apartment." We've talked a lot about what they have to offer at the Ronald McDonald house and she really wants to see Sully and Mike Wazowski. All in all, we're doing well and continue to thank you all for the positive work and prayer on our behalf.

Update: We left the room for the first time this afternoon. Katja was very hesitant at first but now we'll probably have trouble staying in the room (there is a picture from today too).

Thursday, May 22, 2003 3:12 PM CDT

Everything seems to be improving at the moment. Katja's rash is nearly gone, and a lot of fluid weight has been taken off with Lasix. There's still a ways to go to get her back to a near normal weight and breathing is still difficult. Kat has done really well with a small amount of oxygen through a nasal canula. Finally, her platelets have come up some. She's been running in the uncomfortable range below 25,000 and has been vomiting some small amounts of old blood - really scary when we get there. She seems comfortable overall.

White blood count today: 1.1 (1100!!) with an ANC of 900. If she felt like it and wasn't on oxygen we could leave the room for some exercise. Maybe tomorrow.

The bone marrow biopsy has been called off for tomorrow because of the rapid breathing, they'll probably do it next week and will do a blood test in the mean time to see if the graft has taken hold. Keep praying for that. I think I can see a dim light at the end of the tunnel today but there's still a long way to go.

Tuesday, May 20, 2003 10:39 PM CDT

Much like yesterday today with the added adventure of a severe fluid overload. Katja is up at least 5 lbs since around the time she stopped eating. Her face, eyes, lips and everything is really puffy and she is having trouble breathing. This was something we noticed for several days straight with higher and higher weights, but everyone was buzzing about the rash too much to pay attention. Now, the buzz is about getting the fluid reduced. She is now on a continuous drip of the pain medication and pain is somewhat less intense but no less frequent. She is sleepy but not sleeping much and looks tired. She's definitely a fighter! Now, we need to get rid of some medications and get those white cells fast. Please pray that her breathing will ease as the fluid reduces. Continue to pray that the pain will go away. And, as always, pray that the graft will take hold and kill all the cancer forever.

Thanks for everything, more later.

Monday, May 19, 2003 5:26 PM CDT

Well, some things are getting better, some things are staying the same, and some things are worse. Katja's White Blood Count is .8 and she has an ANC of .7 (yeah, that means she can leave the room tomorrow with a mask). Her rash looks about the same, sometimes worse and sometimes a little better (the doctors want to do a biopsy of the skin to figure out this confusing rash). But, the pain in her tummy seems worse. The doctors are stumped. They are not sure she is having graft vs. host disease (GVHD), a reaction from medications (our hands down favorite bet), or a virus (not much you can do about that).
We hope this is resolved in the next few days, Katja really needs a break.

Sunday, May 18, 2003 4:01 PM CDT

Everyone, things are improving fairly steadily now. Katja has a white cell count of 0.5 (read as 500) and at this level they start checking for an ANC which is not 0.4 (400). At 500 for two days straight, she'll be able to leave the room with a mask and walk/play a little. As this recovers, hopefully her rash and belly will improve even faster. The rash is already receding somewhat and she has been without fever for several days (knock on wood) and they should start removing some of the antibiotics; maybe she'll start eating soon too!

Keep the prayers coming, we miss you all and can't wait to leave this room!

Friday, May 16, 2003 1:02 PM CDT

I think we're slowly improving here. No major fevers since two days ago and no medications either. The docs are all agreeing that the rash is most likely related to medications rather than the GVHD, nothing specific is going to be done for it right now except a skin cream. Kat slept about 14 hours straight, very deep sleep too without all the talking and moaning from the last few nights. She gets very upset when people have to wake her up...noon is way too early!!

White Blood Cell count: 0.4 and rising!!

Keep the prayers coming!

Thursday, May 15, 2003 10:41 AM CDT

Well, we're on the rollercoaster now. Katja is again having a whole body rash, though not as pronounced as the first rash two years ago. Her fever has been under control with the Vioxx but they are still looking for answers for both the fever and rash. She will be seen by dermatology today and possibly a skin biopsy will be done. Let's hope they can put this rash issue to bed one way or another! Still, when she's awake and pain is controlled, she is very talkative and playful, and as always very bossy. She certainly knows just exactly how she likes things to be done.

Her white count is hovering, at 0.2 today, but they expect a sharper rise very soon.

Now we have to pray for a speedy, but not too speedy, recovery. The GVHD stuff can be worse if cells recover too fast too! God's Blessings.

Tuesday, May 13, 2003 9:34 AM CDT

Things have gotten a lot worse in the last day and a half. Katja has been having very high temperatures, most recently over 103 degrees, almost constantly. She can't or won't take tylenol regularly so we are looking into alternative medications for fever. There are very few IV meds that drop fevers that don't affect blood clotting etc. She is not really awake, not really sleeping, and she is breathing very hard and fast. We keep hearing that this is a normal occurrence in the BMT unit. She continues to have negative blood cultures and lungs are clear. They may do a CT scan of the chest and abdomen to rule out other issues. Right now, we are just waiting to start a new med and trying to keep her comfortable. We need serious prayer right now for strength for Katja, and prayer that the fevers will drop. One point of good news is that Katja now has a white blood cell count of 0.3, not great but better than zero.

UPDATE: Katja's fever broke after 5pm and she is finally breathing and resting comfortably. It is incredibly hard work to breath like she was. She has taken Vioxx (arthritis med) that broke the fever and lasts up to 18 hours! She had a CT scan that looked at her sinuses and chest/abdomen, they'll read them tomorrow. We'll know more then, but maybe not. It is not uncommon for people to have this type of fever.

Keep praying, between that and meds (and Kat's own inner strength) she's fighting this through.

Sunday, May 11, 2003 5:18 PM CDT

Katja is having a few bad days. She has more frequent pain in her stomach and is nauseous at times. The pain is intense, but is quickly reversed by pain medication. She also quickly returns to normal activites once the pain is surpressed. Katja also spiked a temp over 100 the last few days and needed a chest X-ray last evening. The X-rays came back fine, so they will run antibiotics for 48-hours to wipe out any infections. She is on the home stretch for her new cells to begin growing and she can begin fighting off the infections. Gods speed for a quick recovery.

Thursday, May 8, 2003 8:43 AM CDT

Last night was a little worse. Katja is definitely uncomfortable - tummy pain. The plan now is to start some IV pain medications and we'll have to tiptoe through this. I've urged the doctors to start small so we can hopefully avoid the agitation she got after the last bone marrow biopsy, we also don't want to sedate her to the point of her sleeping all day long. We'll let you know how it goes. So far, everyone still considers this a normal and usual part of the treatment and recovery.
Keep the strong prayers coming for Katja's strength and comfort, pray that she recovers early.

Wednesday, May 7, 2003 5:53 PM CDT

Still relatively smooth sailing here. Katja has pretty much stopped eating though nutrition is being handled well through IV. She has continued to have some tummy pain and a few bouts of nausea. She's really still doing well, just not as well as yesterday. We've heard that most people will cycle through good and bad days, if this is a bad day we'll take it.

We are now at day plus 5, hopefully at day 10 or 14 things will start recovering right away. You all remember our Katja - the one who breaks all the records for speed in recovery!! Keep praying for that.

The last few days will from now on be known as "The Days of Play-Doh" because that's all we've done!! Thank God she is so creative.

Take care all, more later.

Sunday, May 4, 2003 4:02 PM CDT

After Katja's BMT Friday, she managed to sleep 17 plus hours. She woke up with energy and ready to play. We can hardly believe how well she is doing. She tries to eat, but usually cannot keep it down. We are just so proud that she keeps trying. Katja seems to be at her best around 10:00 p.m. That is the time she wants to eat and talk about life. She is having a hard time winding down for naps and bedtime, but we don't mind. The hospital staff seems surprised by how well she is doing. We pray that it continues to go well and that the bad times are short lived. I think people are praying really hard, because something is working!

Friday, May 2, 2003 8:12 PM CDT

Katja turned a corner last evening and began to eat again. She seemed back to her old wise self and talked a lot about what she is going to do when she grows up. She said, "I am going to go to parties and dances." When asked if we could go with she exclaimed, "No, only Princesses and Princes can go." She also stated, "Isn't this a wonderful world." Even with all the hard times, she simply sees the positive.

This afternoon, she demanded beef jerkey. This of course had everyone surprised and laughing. We had a "Happy BMT" party with singing and pictures taken when the cells arrived at approximately 2:45 p.m. The fun and excitment was short lived. As soon as she had the stem cells hooked up, she began to get sick. It was very hard for her to understand that this is the one thing that will make her well, even though it makes her sick right now.

One of the side effects is the smell that is coming from her body and will last for 24 hours. It smells exactly like creamed corn. Not the best smell, but not the worst either.

Now we wait and pray for the best possible outcome.

Thursday, May 1, 2003 6:23 PM CDT

Tomorrow is the big day. Katja will be receiving the stem cells from the umbilical cord at 2:00 p.m. Friday, May 2, 2003. Please try to remember to stop what you are doing and say a prayer at that time. Please pray that the new bone marrow will grow, be healthy, and no long-term damage done to her body and organs.

Wednesday, April 30, 2003 7:52 PM CDT

6 of 8 radiation treatments are now done, transplant is less than 2 days away!! Kat has started slowing down, the meds and radiation are catching up with her. She's been more nauseous and tired, she has not been able to keep any food down today at all. Most likely, she'll be on IV nutrition soon (with all of it's side effects). She is still an amazing trooper and we are so happy that she has not and will not be anesthetized for the radiation treatments, that was a huge fear of ours. No one is surprised that she is starting to show these symptoms, maybe we were delusional thinking she'd fly right through this process. Still, keep the prayers coming. We're trying to keep her spirits up and minimizing the nasty parts of our hospital life.

We'll write more soon.

Monday, April 28, 2003 8:30 AM CDT

We are doing well here at Fairview. It sure is in a nicer location - better to be surrounded by college students and closer to good food too! Katja starts her radiation twice daily today, we hope this goes well. We are going to try without anesthesia this first time. She continues to eat everthing in sight, no problems with nausea or energy loss. She's simply amazing. The doctors keep raising their eyebrows when we say she is still eating and they see her perky self. She is full of attitude. Keep us in your prayers and we hope the radiation goes smoothly. God's Blessings on you all.

Update: Katja did GREAT getting her first dose of Radiation! She stayed perfectly still and was done in 10 minutes. She is feeling a little sick with a headache and nausea, but continues to eat and play.

Thursday, April 24, 2003 11:13 AM CDT

Katja is getting her first dose of chemo and doing fine. She showed some anxiety going back to the cities and getting "hooked up" again, but overall adjusted fine.

It did not take long for all the nurses to start buzzing about how bright and outgoing Katja is. She has welcomed some people and “snubbed” others as they walked in her room to introduce themselves. There are lots of new rules we must follow that are more stringent than at Children’s Hospital. Visitors will need to go through a health quiz every time they come visit, but visitors are welcome. There cannot be more than three people in the room at one time. No perishable items are allowed or anything that can possibly carry bacteria (including our winter coats). They keep her room as sterile as possible. We have everything we need to get through the next several weeks and pray that she will recover before the end of May.

Monday, April 21, 2003 12:18 AM CDT

We hope everyone had a joyous Easter - even though the weather didn't cooperate. We now have a nearly complete calendar for Katja's upcoming treatments. We will be admitted to the U of M on Wednesday afternoon. There will be three days of chemotherapy, then a day off. Starting Monday morning, Katja will have twice daily total body radiation therapy for four days.

After another day off, the "transplant" will be done (this is called day zero). This is little more than hanging a bag with the cord blood, just like a regular transfusion. That's when the magic begins...the stem cells find their way into Katja's empty bone marrow and begin to live and grow. After about two weeks, the new bone marrow should begin producing blood cells. We hope that Katja will recover speedily and be discharged with us to the Ronald McDonald House somewhere between day +21 and +28. Of course, it could be much longer depending on any complications.

We will give more details as things occur. Keep your prayers coming and pray for our strength as well as Katja's strength and comfort.

God's blessings.

Wednesday, April 16, 2003 8:42 PM CDT

We have completed most of the preliminary testing for Katja which included an EKG, echocardiogram, chest x-ray, measurements for radiation, and a bone marrow biopsy. We just got the results back on the biopsy and are pleased to report that Katja is still in remission and building lots of new cells. Unfortunately, they will be wiped out with three days of chemotherapy and four days of radiation. The great news is she is getting the transplant May 2 from an umbilical cord. The cord is packed with cells and is a 5 of 6 match with Katja’s HLA typing.

The last few weeks at home have been wonderful. Katja has enjoyed playing at the park and having play dates with friends. We get to enjoy one more weekend and then back to the hospital. She is scheduled to start chemo on Thursday. We pray for little complications and a quick recovery after the transplant.

Tuesday, April 8, 2003 11:43 AM CDT

Good news! It sounds like Katja is considered in full remission, not partial. The immature cells (blast) that they found in her bone morrow are normal. Everyone can have around 2% blast in his or her bone morrow, so this is normal. Two different people counted and looked at the cells and were not concerned with what they found. This is actually great news. We will begin a weeklong outpatient workup at the U starting Monday. We are truly blessed!

Monday, April 7, 2003 4:16 PM CDT

The benefit dinner/auction/raffle was a HUGE success. It was absolutely amazing and the support of the community was overwhelming. We are truly grateful for everything that was done in preparation for the event and the generosity of everyone who attended or sent donations. Words cannot describe how thankful we are, but we will start with THANK YOU!

We did find out today that Katja had about 3% immature cells in her bone marrow. This is good, not great, but good. We think this is considered partial remission and we can continue on with the bone morrow transplant preparation. We will know more tomorrow when the doctor from Children’s consults with the doctor from Fairview-University BMT unit. We are hoping to begin the weeklong outpatient testing at the U next Monday. If everything goes well and the cord-blood is secured, Katja will have the transplant following chemo and radiation.

We will write more when we get solid information. For now, Katja is doing very well at home. She is very spirited and misses her friends from daycare. Continue to pray as it is helping in ways you cannot imagine.

Sunday, April 6, 2003 10:48 AM CDT

Katja went in for her bone marrow biopsy Friday. We expected to have results on Saturday, but did not hear back from her doctor. We did speak to her doctor late Friday afternoon and heard some concerning news. They found some abnormal cells in the aspirate they took. We do not know the amount and will not know until the biopsy results are looked over. We hope and pray that it is less than 5%, because she would be considered to be in partial remission.

Today is Katja’s benefit dinner and silent auction at the Sauk Rapids Legion from 4 – 7 p.m. Katja will not attend, because she can not afford to get any virus or bacteria. If she became ill, it would delay any future treatment. She is doing very well at home and her counts continue to improve. Please continue to pray for Katja’s remission and successful bone marrow transplant in the future.

Tuesday, April 1, 2003 2:46 PM CST

Hello everyone.

We continue to do well at home. Katja is going to Children's today for a Platelet transfusion but continues to amaze everyone with her recovery. At discharge, her ANC was just over 100. Yesterday at the St. Cloud Centracare plaza, it was measured at 1550!!. This likely means that we will stop the IV medication at home and her immunity is reaching a fairly normal level.

We intend on being at the benefit dinner on Sunday
(for those of you who haven't heard of this:
Sauk Rapids Legion
Sunday April 6th, dinner from 4 to 7, silent auction from 3:30 to 6:30.
There is also a raffle being held earlier in the day.

We really want to thank everyone for all the hard work in setting up this event so quickly and for involving our church and some family in the event. We are continually amazed by the generosity and hard work of people around us.

We'll write more later. We continue to ask for prayer, especially surrounding the bone marrow biopsy set for Friday. We need this to be negative for cancer cells!!

Saturday, March 29, 2003 7:59 PM CST

Well, we are in shock, because Katja was discharged today. We can not believe how quickly Katja recovered from this round of Chemo. It is nothing short of a miracle. We will be administering an antibiotic and GCS-F at home. We will need to return to the hospital if she begins to bleed or gets a tempurature of over 100 degrees. God willing, we will remain at home until she has an ANC of over 1000. Then we are off to the next phase of treatment (whatever that is?!?!). Keep praying, because it is definitely working!

Saturday, March 29, 2003 7:59 PM CST

Well, we are in shock, because Katja was discharged today. We can not believe how quickly Katja recovered from this round of Chemo. It is nothing short of a miracle. We will be administering an antibiotic and GCS-F at home. We will need to return to the hospital if she begins to bleed or gets a tempurature of over 100 degrees. God willing, we will remain at home until she has an ANC of over 1000. Then we are off to the next phase of treatment (whatever that is?!?!). Keep praying, because it is definitely working!

Friday, March 28, 2003 4:00 PM CST

If you're just checking back for the first time in a while today, check yesterday's entry. The ANC is now 57 today and the doctors have mentioned the best four letter word in the English dictionary HOME!!! We will be watchful the next day or so then will probably be checking out!!. Katja will have a bone marrow test on Friday (we think) and we will be seriously praying that the results are favorable (zero cancer!!!). She continues to thrive on social visits and we are all continually thankful for the help and support we have received. More later. God Bless.

Thursday, March 27, 2003 3:34 PM CST

Hello everyone.

Today is an exceptional day. Katja has an ANC of 14 today!! This is at least a week earlier than anyone expected and hopefully not a fluke or lab error. Remember that we can leave the room over 200, leave for home when over 1000 (though some kids have left recently at 500). Katja remains healthy and mostly happy. She is eating and drinking well, runs and is a daredevil when unhooked. Her hair is very thin and very very blonde now, will most likely all fall out. Otherwise, so far so good.

Since we've written last, we had our meeting at the U of M hospital in the bone marrow transplant (BMT) center. The treatment and follow up etc were outlined along with the preliminary statistics. Everything now sounds more positive than before. This will be a very long ordeal with multiple significant hurdles. We will most likely be here at Children's for one more round of chemo (called consolidation therapy) before doing anything with BMT. The U is evaluating the possible donors for the best possible usage and match. There are more than one umbilical cord blood matches, at least one good person match. It can take up to 3 months to get the marrow from a live donor, only 2 weeks to procure the umbilical cord blood. The cord blood is also better in terms of the possible rejection and GVHD (graft versus host disease). We were told that there is only a 1% risk of the transplant not taking, between 10 and 15% risk of severe GVHD, and about 30% risk of the cancer returning after transplantation. All in all, the odds sound better than we first heard.

The procedure involves 7 days of strong chemotherapy and twice daily radiation doses (whole body). Then the transplant is given and called Day zero. The newly transplanted stem cells would begin to thrive and grow within 7 to 10 days, hospitalization would likely be for another 4 to 6 weeks watching for GVHD, infections, and administering anti-rejection meds. At discharge, she'd be on 10 to 12 daily medications and be seen daily in the clinic. They want us to be within 30 minutes of the hospital for at least 100 days after discharge - we'll likely be at the Ronald McDonald house or another short term lease option near the campus. After about a year of close follow up etc, she could be off all the medications. There is no need for lifetime anti-rejection therapy with BMT as her blood type will become that of the donor.

Whew, that's a mouthful. If your math is better than mine, you can figure out the timing - but I am assuming we'll be in the trenches until at least October or later. We are still trying to figure out the logistics of this and how it will fit into our working life, but we need to take it one step at a time.

We are looking forward to the benefit dinner, and another bone marrow drive at the Anoka HS this Saturday. We are very very much in favor of people continuing to "pay back" our being blessed in finding bone marrow donor matches. We are committed to continuing to inform everyone we know about being tested and being on the registry (especially any and all healthy minority/mixed race people out there reading this!!).

Thank you all for checking in, God's blessings on you all.

Sunday, March 23, 2003 0:24 AM CST

So far, so good. The fever was only a one time thing as of tonight. She is on a couple IV antibiotics and doing well. She remains her usual spitfire self, making sure everyone follows her exact instructions to the letter. She has started losing some hair, we expect it to come out in clumps soon and she seems fairly OK with the idea. She is still able to be unhooked for some periods and is able to play, ride a trike etc.

Keep praying for Katja and Grammy Nemeth who also started chemo on Thursday. God's blessings.

Friday, March 21, 2003 3:49 PM CST

Last night, we began the expected go round with fevers, blood cultures, and loads of antibiotics. Kat spiked a 102.2 temp in the middle of the night (after spending a great evening chowing bananas and watching movies). We had already discontinued one antibiotic because she has started getting rashy - now I've had to recover this old ground with the docs about antibiotics. She'll be on at least a couple heavy antibiotics now until the blood cultures are negative and she is fever free for a few days. This really sucks although we did expect this type of thing to happen.

Katja is still very strong, very sweet, and of course very very smart. Most people who see her would not immediately know that she has had chemo and is fighting infections. The biggest difference this time through is that Katja simply loves to have visitors. Although we have to restrict the number of people and who comes in now, she always lights up when her loved ones come to visit. We should not have children visiting any more as we all know how many bugs kids can carry; and anyone suspecting any kind of cold etc needs to wear a mask, wash hands well, or just wait to visit until later. We are again confined to the room (which is overflowing to the bursting point with gifts, food, and all the other stuff it takes to live in a 12x12 room). While we really do appreciate all the great things we've been given, the only thing we need right now is continued prayer. Second to that, I want to thank in advance anyone from the VA who can help me to stay here with Katja by donating leave. Not only can I not imagine leaving, Katja probably wouldn't let me leave for work.

We will be finding out more about the bone marrow donors, the process etc, on Tuesday at the U of M. I think everyone was so relieved to hear that there are possible donor(s) that we all heard the data a little differently. A "perfect" match is 6 of 6 markers, a 5 of 6 is also good. Umbilical cord blood is preferable to person donor because it may carry less rejection and other side effects. Other than that, we don't really know anything yet.

We'll keep fighting if you'll keep praying with us. God Bless you all.

Wednesday, March 19, 2003 1:46 PM CST

One of our prayers have been answered!! They have found two matches for Katja's bone marrow. One is cord blood and the other a person. We need to continue to pray hard that Katja goes into remission and that we can use the marrow from the cord blood. I also want to continue to stress the need for people to donate bone marrow and blood products, because you never know who's life you will save! GOD BLESS EVERYONE!

Sunday, March 16, 2003 9:51 PM CST

What a good couple of days Katja has had. Yesterday turned out pretty good after all. Right now, she is done with chemotherapy and is only receiving regular maintenance medications, platelets and red blood cells as needed. She will most likely lose all the hair she just grew in (we are planning this time to get a short haircut before this happens). She is more likely to start getting sick within the next week or two as her ANC (immunity level) drops. She will be at Zero immunity for at least a few weeks then it will slowly return. She will need another bone marrow biopsy after she recovers from the chemo to determine whether or not she is in remision. After that, we have no idea what will happen.

We still have no word on bone marrow donor availability. Our oncologist has been on vacation. We are still encouraged by people getting registered to be bone marrow donors. Use the link on this page to find out more information about this process. The red cross in Minneapolis is also a good resource. Once a month (call 1-800-give-life) they hold a "donor day." People give a pint of blood and are tissue typed for bone marrow etc. for free. Otherwise, Memorial blood bank in Minneapolis does this HLA typing for a $65 fee. Keep your eyes open for other options including the March 25th SCSU bone marrow drive.

We want to fully acknowledge all of the wonderful people in our lives who've again stepped forward to help us in many ways. Your generosity and thoughtfulness is amazing. We ask for continued prayer first that this round of chemo will be successful, second that a bone marrow donor will be located. Thank you and God Bless you all.

Saturday, March 15, 2003 12:17 AM CST

Katja had a great day yesterday. She was able to be unhooked and given a pass to leave the hospital. She went to the theater to see "Jungle Book 2" and had professional pictures taken. Unfortunately, she became ill during the night and had a nose bleed. She is not doing so well today. We try to make the most of the little bursts of energy that she has and help her through the tough times. Thank you for all your prayers and support.

Wednesday, March 12, 2003 8:56 PM CST

The last two days seemed like mirror images. Katja is having a little bit of the "chemo blues." She is sick to her stomach and lethargic most of the day, but manages to find some energy when visitors' come to play. Tomorrow morning is the last dose, then we wait. Overall, things seem to be going well. Thank you for your continued thoughts and prayers.

Monday, March 10, 2003 7:10 PM CST

Katja had a rocky start of chemo on Saturday, but has done well the past two days. She seems to gain more energy every hour. She has had lots of visits from relatives and friends of the family. Her spirit has returned as well as her will. Your prayers are working!

Saturday, March 8, 2003 10:06 AM CST

Yesterday went as well as can be expected. Katja's 4th Hickman was placed uneventfully and now she can stop being poked. She is upset about having a Hickman and all she wants to do is go home. We are very happy that people are getting out to be registered as bone marrow donors. It is important that people do this, remembering that many other people around the country and world are going through exactly what we are going through right now. Thank you for the positive thought and prayers.

Friday, March 7, 2003 12:54 AM CST

Things have taken a turn for the worse. Thursday night we needed to bring Katja in to the hospital due to a significant nose bleed. She needed platelets and packed cells, along with a new drug to help her blood clot. We have decided to have her Hickman placed today and start chemo tomorrow. Keep Katja in your prayers.

Thursday, March 6, 2003 6:40 PM CST

We are afraid the news we heard today is not very positive. Katja's blast cells are at 17%. She will need to start Chemotherapy on Monday, after a Hickman is placed. Katja has a 30% chance of going into remission from this treatment. If she goes into remission, she will have a bone marrow transplant in about 6-8 weeks. We did find out there are no matches in the US. Next will be an international search. We are hopeful they will find a match in the Scandinavian countries. With the bone marrow transplant, Katja has a 30 % chance of recovery. We need you to pray for a perfect matched donor and for little complications with the treatment. We will get photo's on her web site within a few days.

Thursday, March 6, 2003 6:40 PM CST

We are afraid the news we heard today is not very positive. Katja's blast cells are at 17%. She will need to start Chemotherapy on Monday, after a Hickman is placed. Katja has a 30% chance of going into remission from this treatment. If she goes into remission, she will have a bone marrow transplant in about 6-8 weeks. We did find out there are no matches in the US. Next will be an international search. We are hopeful they will find a match in the Scandinavian countries. With the bone marrow transplant, Katja has a 30 % chance of recovery. We need you to pray for a perfect matched donor and for little complications with the treatment. We will get photo's on her web site within a few days.

Wednesday, March 5, 2003 11:59 AM CST

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----