History

Journal History

Wednesday, April 25, 2007 2:00 PM CDT

We are gearing up for a big Alex's Lemonade Stand this year! The Adventure Princesses were so into the stand last year, that every tribe in the region has committed to running a stand this year!

Our big day will be Saturday, May 5, from 10-2pm. And it's getting bigger and more exciting every day! So far we have support from Publix (there will be 20-25 stands at Publix Supermarkets in the Jacksonville, FL, area), Pepsi (donating Tropicana Lemonade), and the Tom Coughlin Jay Fund. There will also be appearances by NFL players and PGA tour golfers who will be in town for the Jay Fund's big annual golf tournament.

But most important, the girls will be learning valuable life lessons: no act of kindness is ever too small - and every person makes a difference.

For those outside the Jacksonville area, visit our virtual lemonade stand at:

http://www.firstgiving.com/lemonadeforlife

Fighting cancer, one cup at a time!

Tuesday, March 20, 2007 4:11 PM CDT

We are gearing up for a big Alex's Lemonade Stand this year! The Adventure Princesses were so into the stand last year, that every tribe in the region has committed to running a stand this year!

Our big day will be Saturday, May 5, from 10-2pm. And it's getting bigger and more exciting every day! So far we have support from Publix (we hope to have a stand at every Publix in the Jacksonville, FL, area), Pepsi (donating Tropicana Lemonade), and the Tom Coughlin Jay Fund. We hope to have appearances by NFL players and PGA tour golfers who will be in town for the Jay Fund's big annual golf tournament.

But most important, the girls (and, this year, boys in the Adventure Guides program!) will be learning valuable life lessons: no act of kindness is ever too small - and every person makes a difference.

I'm sure Alex would agree!

For more info about how YOU can make a difference, visit www.alexslemonade.org.

Sunday, December 10, 2006 8:11 PM CST

REFLECTIONS ON 2006:

- Why do people travel to Europe to experience a different culture, only to eat at T.G.I.Fridays?

- Don’t forget it’s the little things that impress children most. To Lina, the best part of going all the way across the Atlantic Ocean (to Belgrade) was getting 3 in-flight meals and getting to watch whatever movie I wanted on my own little TV during the flight!

- Life is short, no matter how long you live. What do you want said about you at your funeral? How can you live that way today?

- Try to look at the world through a 3-year-olds eyes – where responsibility is fun, learning is a joy, and life is lived from moment-to-messy-moment.

- The best years in life are the ones where there isn’t much news for your Christmas letter!!!

RESOLUTIONS FOR 2007:

- Try to get at least halfway to 5 a Day fruits and vegetables (note to self: fermented grapes and hops don’t count).

- Every day, make time to: put it away if you got it out; pick it up if you put it down; close it if it’s open; and just generally put everything in its place.

- Set aside time every day for something you really enjoy. I want to read for fun more often. (Yes….it’s a repeat from last year….Why is this one so hard?!?)

- Thank God every day. In every circumstance. For every thing.

May your year be filled with health, love, and peace!

Saturday, September 23, 2006 9:28 PM CDT

It's been a long time with no update. But all is well here! First grade is well underway. Lina's latest report from her teacher says:

"Lina is always curious and determined...She never lets anything stop her from finishing something she needs to do."

I thought that really sweetly and appropriately summed up Lina's "curiosity" and "persistance." In my counseling psychology training I remember learning that any strength carried to its furthest end is also our greatest problem. But honestly, Lina loves school and is doing great. And I'm sure her curiosity and persistance will be great assets in her life...just not always easy for those of us guiding her!

Luka is busy being a 3 year old. He has a double dose of Lina's persistance - without her amazing verbal skills. So I actually use my degree and behavioral training skills every day! I don't regret a single moment of that expensive Master's degree! :-)

Daddy continues to love his work at Nemours. Now we have an inside view of why treatment there was THE BEST. It is an incredibly patient centered organization (they advise their staff to get off a crowded elevator to accomodate patients!). And it's always nice for me to have an inside track to any suggestions for improvement. Hmmm, any wonder where these kids get their "persistance?"

We continue to be thankful for each day. And we send up our prayers for all continuing to fight, and for those who will always love and grieve.

Monday, April 24, 2006 6:25 PM CDT

**UPDATE: We had a great day at our Alex's Lemonade Stand this weekend! One of the Indian Princesses said, "This is the best day EVER!" So far, we have raised just over $3500 and counting!

We met an inspiring 39-year-old woman who had neuroblastoma as an infant and then RELAPSED at age 2 and a half. She brought her NATURAL BORN SON with her (anyone familiar with nb - or cancer tx in general - will understand why those words are capitalized). This woman has no long-term effects, other than her affected adrenal's kidney being too small.

However we also heard sad stories. One family came one at a time to support the cause in memory of their son & brother who died 39 years ago with stage IV nb. I was fortunate enough to talk on the phone with the mother (it was too painful for her to come) and there we were....two perfect strangers with years between us, talking as if we were old friends. The pain of losing a child - whether to cancer or for any other reason - never goes away.

And on that note, I want to extend a thank you to Alex's family for their dedication to continuing Alex's mission. I can't imagine how difficult it must be. But at the same time, incredibly satisfying. You are making such a huge difference in the lives of all children. A mother of one of the girls helping at the stand (just a 'normal' girl)said she could see a difference in her daughter, as if she was thinking of others more.

And I want to express my gratitude, on behalf of all survivors and parents, to all the children who blazed the trail...their treatments weren't in vain. There would be no survivors today if not for all the brave decisions made years and years ago by parents who knew they didn't even have a chance.**

On Saturday, April 22, Lina and her tribe of Indian Princesses will be hosting an Alex's Lemonade Stand in front of the Johns Creek Publix (CR210W about 3 miles west of I-95, just minutes south of the 95/295 merger). The stand will be from 10:00am to 2:00pm.

Alex's Lemonade Stand continues the mission of Alex Scott who lost her battle to neuroblastoma in 2004 at age 8. Help us contribute to her goal of raising $25 million for pediatric cancer research over the next 5 years!

Tax deductible donations can be made on-line at www.alexslemonade.com or if you'd like to buy a cup of virtual lemonade from Lina's stand (and help the girls get a matching donation from Playtex during the Every Girl Can Make a Difference campaign!!) you can send a check (payable to Alex's Lemonade Stand) to:

Lina Rak
518 Johns Creek Pkwy.
St. Augustine, FL 32092

Please be sure to tell us where you're from so we can learn a little geography! Big thanks & Big How from the Puma Tribe!

Tuesday, April 11, 2006 12:24 AM CDT

On Saturday, April 22, Lina and her tribe of Indian Princesses will be hosting an Alex's Lemonade Stand in front of the Johns Creek Publix (CR210W about 3 miles west of I-95, just minutes south of the 95/295 merger). The stand will be from 10:00am to 2:00pm.

Alex's Lemonade Stand continues the mission of Alex Scott who lost her battle to neuroblastoma in 2004 at age 8. Help us contribute to her goal of raising $25 million for pediatric cancer research over the next 5 years!

Tax deductible donations can be made on-line at www.alexslemonade.com or if you'd like to buy a cup of virtual lemonade from Lina's stand (and help the girls get a matching donation from Playtex during the Every Girl Can Make a Difference campaign!!) you can send a check (payable to Alex's Lemonade Stand) to:

Lina Rak
518 Johns Creek Pkwy.
St. Augustine, FL 32092

Please be sure to tell us where you're from so we can learn a little geography! Big thanks & Big How from the Puma Tribe!

Sunday, January 1, 2006 7:22 PM CST

REFLECTIONS ON 2005:

- I wish everyone could appreciate how much Life – the really important Stuff – is represented in that first BIG step onto the school bus.

- Few things make it feel more like “home” than great neighbors.

- Triathlon is a great analogy for life: It’s a lot of hard work, with a lot of time spent wondering, “Why am I doing this???”- all for a brief moment of accomplishment at the finish line. The trick is to train ourselves to enjoy the work along the way!

- Ah, the wonder of genetics! How is it possible our son inherited opposite coloring from us (and blue eyes from some recessive gene) while receiving a double dose of the “stubborn/I-want-it-my-way” gene from each of us?

- So much of our lives – what we do everyday – is so temporary…water could wash it away in a matter of seconds. Do I spend enough time on what’s truly important?

RESOLUTIONS FOR 2006:

- Try to get at least halfway to “5 a Day” fruits and vegetables.

- This year we bought a new home with a great view – especially great sunsets. Enjoy the view EVERY DAY.

- Read for fun more often. (yes, this one is from last year! But hey, I’m finally flossing, so maybe it just takes a year to sink in!)

- Slow down. Breathe. Appreciate. Be thankful. Do it again.

May your year be filled with health, love, and happiness!

Friday, December 23, 2005 9:37 AM CST

Four years ago tomorrow, Lina was discharged from the bone marrow transplant unit after receiving the second of two stem cell transplants and a new chance at life.

She turned 6 on Dec. 13, and is just like other 6 year olds you know....quote: "I like my babies (her special doll) a lot. I like to ride my two wheel bike- it makes me feel like a 6 year old. I like skirts, tights, and dresses. I like chocolate chip cookies. I love Harry Potter movies. I like to talk a lot to people (!!!). I can read some special books all by myself. I love my Polly Pockets and Barbies. I think my brother is so crazy and I like him. I love Emma, my dog. I like to surprise my mom and make her coffee in the morning. I am a big helper around the house. I like to play rough with my Daddy. I like Princesses - I have a Princess room. I love to do art - it makes me feel happy. I love Billy - I might get married with him."

This time of year is a celebration of new beginnings. We all get a new chance at life. Let's remember what's truly important and make the most of it.

**PLEASE CHECK OUT WWW.LUNCHFORLIFE.ORG AND GIVE UP YOUR LUNCH TO CURE NEUROBLASTOMA!**

Friday, December 23, 2005 9:17 AM CST

Friday, August 12, 2005 12:15 AM CDT

I don't update often, but do keep Lina's caringbridge site going for several reasons. One thing I often think about is the way newly diagnosed families sometimes find their way to these sites. I remember in the early days of diagnosis, sitting at the computer, reading page after painful page of children losing their battles with neuroblastoma. I just didn't find many happy endings.

While we soon come to realize that the "ending" we're looking forward to (a return to the way things used to be) will never come, there are children out there -- maybe like yours -- with Stage IV neuoroblastoma, who endured all the harsh treatments, and came out the other side....now in remission, healthy, happy, SMART (she wears me out!), and passing a milestone - KINDERGARTEN - that, at diagnosis, seemed to far away to even dream about.

Keep your eyes on the road right in front of you, and keep going - crawling if you have to - but never lose hope.

Wednesday, January 12, 2005 9:31 PM CST

I wasn't very good about sending Christmas cards this year...3 year re-evals for Lina, coinciding with selling our house, moving into a temporary town house, and trying to stay on top of the builders of our new house all conspired to make my card list a little shorter this year. But we wish you all the joy, hope, and peace the season is meant to bring. Our holiday greeting to all...

REFLECTIONS ON 2004:

- It's amazing how much can be communicated by a 16-month-old whose only words are the names of family, "nana," "choo-choo," and "ball."

- Four 4 year-olds have a unique way of turning the tables and teaching their moms, who thought it would be "fun" to teach them in a co-op preschool!

- Nothing makes you question your own decorating choices quite like putting your house on the market to sell.

- If so many countries around the world hate the U.S., why are so many of their people becoming U.S. citizens?

RESOLUTIONS FOR 2005:

- Unplug: spend less time on the phone, the computer, watching T.V., using the Blackberry...

- Read for fun more often.

_ Floss. For real this year.

- When something seems particularly stressful, or difficult, or maddenning, imagine how that very same situation would feel if a loved one died. Then give that situation the importance it deserves.

Monday, December 13, 2004 8:36 PM CST

5 years ago, our special girl was born! 3.5 years ago, we weren't sure we would ever celebrate this day. It's an understatement to say we are so grateful today.

Wednesday, October 13, 2004 4:56 PM CDT

Obviously, no news is good news! We seem to be moving more and more towards "normal" life - whatever that is - and fewer updates on caringbridge is a part of that, I suppose.

Lina continues to be very healthy and happy and smart and amazing and all the things a 4 and a half year old is. She will have one more set of re-evals (CT, mIbg, bone marrow biopsies) in Nov. or early Dec. After that, we will move to "long term survivor clinic" and just non (or less)-invasive evaluations, like urine collection and blood work.

Lina is enjoying 2x/week preschool with friends. Mom co-teaches this and finds it quite exhausting! Home schooling is no longer on the agenda for this family!
:-) Luka celebrated his first b-day on August 24 (new pic in the photo album). He has quite a mind of his own, and right now, seems very determined to be carried across the podium at graduation, saying only "uh-oh," "mama," and "tica" (the serbian word for bird).

Next week we celebrate 3 years since Lina's first transplant. And even with 3 years distance, we appreciate that a very thin line separates us from a land of flushing lines, daily meds, fighting a much-hated unseen force inside a little body you otherwise love so much. But, for now, we'll embrace the normal, boring life we have....so don't expect any updates too soon!

Monday, June 14, 2004 11:34 AM CDT

We had a wonderful turnout for our Alex's Lemonade Stand here in Jacksonville, FL! On Saturday, we received more than 2500 dollars in donations to contribute to Alex's fund for pediatric cancer research. The donations continue to come in, including several generous donations from people who saw Lina on the news or in the Florida Times-Union. Here are a couple links to stories that appeared in the paper:

http://jacksonville.com/tu-online/stories/060704/pat_15795580.shtml

http://jacksonville.com/tu-online/stories/061304/met_15850700.shtml

Lina had several young friends helping out at the stand. What a great way to introduce kids to serving others! Many, many thanks to our church, Most Holy Redeemer, for providing the space for us, and our youth group for running a car wash and donating their proceeds to Alex's Lemonade Stand Fund.

We were so touched by the number of survivors and parents and family members touched by cancer who came out and shared their stories. And there was nothing like seeing little kids with ziploc baggies full of coins who had emptied their piggy banks to give to others.

What a wonderful day. Please visit www.alexslemonade.com to read the inspiring story of the little girl who started it all. Donations can be made on line or by mail at the address listed on her site:

Alex's Lemonade Stand Fund
333 Lancaster Avenue #414
Wynnewood, PA 19096

God bless you and your family, Alex!

Wednesday, May 26, 2004 4:05 PM CDT

Obviously, no news in good news in caringbridge land.

We just completed Lina's routine 6 month re-evals with CT scan, MiBG scan, bone marrows, and urine catecholamines. Everything is still okay! We have now graduated to once every 6 months clinic visits (instead of every 2 months). We will do one more set of scans in 6 months, and then probably just check urine after that.

We are hosting a Jacksonville branch of Alex's Lemonade Stand on June 12. Check out www.alexslemonade.com for the amazing story of Alex's dream. Why not enjoy a cup of "virtual" lemonade while you're there? There is a place to donate on-line, as well as an address for donations. I'm looking forward to getting Lina involved in volunteering, and she is always working on some "project" for "when we have the lemonade stand."

Thanks for continuing to keep Lina in your thoughts and prayers!

Friday, April 16, 2004 8:47 AM CDT

Today marks three years since Lina was diagnosed. On April 16, 2001, I couldn't even imagine we might be blessed enough to have this anniversary.

Thank you, God, and all the many people who have done Your work through Lina here on earth.

Friday, March 19, 2004 8:40 PM CST

WARNING: Too much time on my hands and a couple glasses of wine encourage arm-chair philosophizing.

Lina and Daddy are gone for the weekend to the YMCA state "pow-wow" near Cape Canaveral. There are tons of activities, even a rocket launch, "but you can't go on it, mama." So here I am with Little Guy snoozing away, and I actually have some time to be in a reflective mood...lucky for you :-)

I have been troubled this week by a mom sharing that her 8 year who is living with relapsed nb, came to her room at 3 a.m. and asked, "Why did God give me cancer?" I keep picturing this, and you know the phrase, "Tugging at your heart strings" -- I actually feel the pull. And I'm asking myself, How would I respond?

What is my role in helping my children live well?

If my role makes that tiny, yet huge, shift to helping my child die well, how do I be the same mom I've been all along?

What if no one wanted to come over to play if my child was dying?

Would I have the strength to embrace the gifts God gives through such a soul-splitting event?

What are the moments I would wrap up in my heart to bring out after they were gone?

Why am I not holding those moments oh-so-gently right now?

A few months back, out of the blue, Lina asked, "How did I get cancer anyway? Was I smoking or sumpthing?" That was her not-quite-four-year-old way of asking, "Why did God give me cancer?" and I missed the moment.

Pay attention.

Thursday, February 12, 2004 8:54 PM CST

First, you’ve learned by now…no news is good news! Second, if the person who sent a beautiful hand-made “LUKA” puzzle to our Little Guy for Christmas wants to remain anonymous, that’s fine. But we’d really love to thank you personally! We got the package on Christmas Eve, but it didn’t say who the sender was. Just the woodworker’s return address, St. Charles, MO.

We are all doing well. Lina is doing great! She has a new haircut that she will tell you makes her look like Dora the Explorer. Her hair grew back curly after treatment, and though I love her so and of course think she’s the most beautiful little girl in the whole wide world, her hair sometimes looks like a cave-woman. Hence, a little trim was in order. She still takes Accutane, which after almost 2 years has caused some pretty noticeable hair thinning. A shorter haircut just looks better all the way around.

Luka grows fatter by the day. He has finally figured out how to roll from his tummy to his back, but the poor Little Guy is just such a big boy that he can’t manage to do it all the time. He is so much more active than Lina was. I am forever having to retrieve my glasses after he grabs them off my face and flings them. Those who know me well are probably snickering, imagining me looking for my glasses, because I’m so blind without them! Luckily Lina is usually around to find them for me. Luka just got over his first illness -- a bad cold with a fever. Hard to believe the only illness we ever had with Lina was cancer! She’s never had any regular childhood illnesses.

We are approaching the time of year when -- in hindsight – we started noticing symptoms in Lina almost 3 years ago. There were a few times in February when she went to bed so uncharacteristically early, that it still sticks out in my head. All were times after a big day of playing outside in the heat. When she was diagnosed, her hemoglobin was 7 (normal 10.5-14. Seven is symptomatic and they transfuse red cells). It makes me wonder how long her marrow was compromised with neuroblastoma, how long before we actually saw the symptoms!

My best friend’s 3 month old was just hospitalized was RSV (she's doing fine now). She said, “I don’t know how you did it. I didn’t know before, but now I really don’t know.” I don’t know how we did it either. The mind has a wonderful capacity to forget (otherwise why would any woman have a second child?) :-) But as I sit here now, I know part of what gets you through is how very, very small your world becomes. A world where the arrival of the hospital meal tray is an exciting thing; a world where being able to take a wagon ride around the floor without the pumps beeping “downstream occlusion” (damn those words!) every three steps gives you great feelings of success; a world where someone asking “How are you?” at the grocery store gives them an answer they never bargained for; a world where you feel satisfied when your child eats 3 Teddy Grahams and a Pringle because yesterday all they would even entertain was water; a world where you get sweaty and almost faint when they give your child her first i.v., not because of a fear of blood, or even necessarily because of your child’s pain, but because you cannot even imagine how you will possibly survive in this world you now inhabit.

Something I am coming to understand is that when we pray to God for miracles, sometimes the miracle is just survival. And unfortunately not always the patient’s survival. But the fact that so many families survive each day might be a miracle in itself.

Saturday, January 10, 2004 10:51 AM CST

Happy New Year, and all God's blessings to you in 2004! We are enjoying a brief cold spell, which always makes it feel like winter. It is easy to enjoy the cold weather when you know balmy days are right around the corner. We had a great day at the beach last Monday!

We have also enjoyed some "normal" doctor visits in the past month. Lina returned to the regular pediatrician for her four year old "WELL CHILD" visit. She got her first round of re-immunizations. How many kids say with excitement, "Oh look Mama...I get to have 4 shots!" Luka was not so excited by his 4 month shots. The doctor also assured me that my nearly 18 lb. boy could definitely make it through the night without 2 or 3 feedings.

Neuroblastoma-wise, things are going well, although I hesitate to say that, lest I jinx us. I never considered myself superstitious, but I know we do many things, like continuing Accutane treatment and some other med. related decisions, largely based on superstition. For the first time since diagnosis, I have been allowing myself to actively consider preschool and kindergarten. Our public school system being what it is, we have some decisions to make about the whats and wheres of Lina starting school. This sounds very small, but it is a huge psychological step. The fact that my mind will even entertain these thoughts is a big deal. Two nights ago, Lina had a fever. She had acted cranky that day, and actually *asked* to go to bed early, so she must have been battling a little bug. But as soon as I saw that 100.5 degree reading on the thermometer, and had concrete evidence that something was going on in her body, one of my first thoughts was, "See what you get for talking about kindergarten today??"

There is a new part of my brain that will forever be thinking and learning and watchful for anything neuroblastoma related (or plain old cancer for that matter). It is easy for the old parts of my brain to think that maybe we have beat this, to think about things like kindergarten, or "late effects" (shorthand for late effects from cancer treatment, i.e., learning disabilities, growth issues, sterility, cataracts, secondary cancers....the list goes on and on, and is quite scary, except that most parents "new brains" probably don't let them consider these thoughts, because they are preoccupied with just surviving THIS cancer....), but any small thing like a fever, a flu bug, an extra-tired girl, and I can feel with each of my 5 senses and with every part of my new brain, how very, very thin the line is between our "normal" life and a life spent facing death. Which if you let yourself consider it, is really what life is anyway.

While going through our digital camera image files on the computer last night, I found a bunch of old pictures I thought I would share. I love digital cameras, but because we don't print the pictures out all the time, I found myself really shocked at how much Lina has changed.

Thank you for continuing to follow Lina's site, and therefore, support us emotionally and spiritually. And please continue to support the others living with their new brains: Christi, Matthew, Daniel, Gabe, Sabra, Eva as well as the families of Matthew, Kaitlyn, Gabbie, Toireasa, Annie, Jacob, and so many others....

Wednesday, December 17, 2003 9:53 PM CST

REFLECTIONS ON 2003:

- Washable markers actually arenÂ’t, but now our walls have memories to cherish forever.

- There is no diploma, or medal, or award, or recognition that could possibly equal the pride I feel when hearing a terribly loud and off-key voice singing along in church.

- What a small world we live in. Even half way around the world in the former Yugoslavia, Â“The West WingÂ” airs on Wednesday nights at 8 p.m.

- There is nothing more hilarious, and sad, and poignant, and touching than watching half a dozen little ballerinas in their tiny leotards and tights.

- Why did we choose the perfect name for our son when all we ever call him is Â“Little Guy?Â”

- Who would have thought the nickname Â“StinkyÂ” could be filled with so much love?

- The biggest joys in life are just on the other side of the deepest sadness.

RESOLUTIONS FOR 2004:

- Drink less caffeine (or at least, really savor the caffeine IÂ’m drinking!)

- Always lift with the legs (especially 18 pound 4 month olds).

- When I meet someone new, resist asking, Â“What do you do?Â” or anything else that suggests they are somehow defined by their occupation.

- Take a deep breath and thank God every time I feel annoyed by the kids. We are only given this day.

- Floss.

- Write a letter once a week. Share with someone else the simple pleasure of seeing their handwritten name on an envelope and wondering whatÂ’s inside.

- Life is shortÂ….wear only comfortable shoes and clothes that Â“give,Â” use the Â“goodÂ” wine glasses, and never pass up dessert.

- Always say Â“yesÂ” when asked, Â“Will you snuggle me?Â”

HAPPY HOLIDAYS TO ALL OUR CARINGBRIDGE FRIENDS!

Thursday, November 20, 2003 2:48 PM CST

Big sighs of relief today in Jacksonville! We had our monthly clinic visit today. We still hadn't heard results of the bone marrow from last week. So of course I over-analyzed that, thinking, "Well, if it's good news, they probably just figure they can wait for our visit, but then again, if it's bad news, maybe our nurse wants the doctor to deliver it, so they're waiting for our clinic visit..." So when the doctor walked in and said everything looked good, I realized how I had been holding my breath without even realizing it.

Lina also had blood work done today (she sat in the chair all by herself, and didn't even make a peep today! Except to say, "Are you really proud of me? Am I a really big girl?" Yes, and yes.) She then went to the audiologist to have her hearing checked. She did this all by herself, too. She has some high frequency loss in her left ear. But her ear drum reading was flat too, which shows the ear drum isn't working appropriately. Usually due to fluid behind the ear drum. Apparently it looks abnormal as well. All this could be due to a mild infection, fluid behind the ear, or just Lina's peculiar way of being, which we wouldn't know about if not for all Lina's other peculiaralities!! We will visit just a regular ole pediatrician and re-evaluate her hearing in 2 months. The loss doesn't seem to be progressing, so that's a good sign.

Blood work included T and B subsets to check immune functions in the blood. If all looks good, then we will start re-immunizing in December. We have to start over again, with all the shots, just like an infant because kids lose all their immunities during tx when their marrow gets so beat up. So Luka is actually ahead of her immunity-wise!

He might soon catch up with her size-wise too! He is our big boy. Almost 15 lbs. at his 2 month check up. Lina weighed just over 16 lbs. at her EIGHT month check up!! Lina continues to relish her "big sister" role and Luka really lights up when he sees or hears her.

Thank you for continuing to check in. Please continue to send up your thoughts for Christi, Daniel, Sabra, kaitlyn, Matthew, Anna, as well as the families of John Russell, Gabbie, Annie, Toireasa, Matthew, and so many others...

Thursday, November 13, 2003 2:47 PM CST

I thought I had posted a new entry last night, but I guess it didn't save. Then I got several messages saying, "Any results yet??" and I realized I should post them officially here!

GOOD NEWS! The MiBG showed "no changes since last scan." The hot spot I saw was "normal uptake in the myocardium" (which one of my friends was kind enough to look up -- it's the middle part of the heart that separates left and right sides) That explains the crescent shape.

We did bone marrow aspiration and biopsies today. Results should be in early next week. Interesting how I always say "we" have done such-and-such when it's actually just Lina getting stuck with a big needle in her back, while I'm drinking too much coffee, eating junk food, and reading magazines. But even so, "we" feel very worn out after testing. It is surprising how being so emotionally charged can be so physically draining.

Despite sounding so painful, Lina never seems to have much pain after a bone marrow procedure. They use general anesthetia at our hospital (amazingly, not every hospital in the U.S. uses anesthetia for bone marrows!) And we always medicate round the clock the first 24 hours with "Tynenol" w/ codeine. Lina did mention her back was sore this afternoon, then took off running around.

Thanks for checking in; please leave a message if you stop by. And send up your positive thoughts for all our little heroes.

Friday, November 7, 2003 2:07 PM CST

**Halloween pics added!!**

Yesterday we had one of the many roller coaster rides you experience through a cancer diagnosis. Lina's MiBG scan was yesterday. MiBG is a radioactive isotope that "lights up" on a scan specific to neuroblastoma. Patients are injected with this isotope and then scanned, much like an x-ray or bone scan, 24 to 48 hours later. MiBG is also taken up by the liver, the bladder, and the salivary glands. So these areas "light up" on the scan too. We are able to watch on the monitor as the scanner goes over each body part. I am always particularly nervous about Lina's face since among other things, (1) she had a lot of tumor activity there, (2) tumors in the head are particularly resistant to treatment, and (3) we still feel a big bump on her jaw where one of her initial tumors was, and this happens to correspond with where the salivary glands light up. So I really try to go into an MiBG scan with a "I'm not a doctor" mentality.

Still, we cancer parents became poorly adept arm-chair radiologists, and you can't help but try to interpret what you see. My attitude was surprisingly laid-back until I saw a very bright "hot spot" that didn't look like normal anatomy. Sort of a crescent shaped thing midline near her liver. This becomes quite a long story, but long story short, there was some misunderstanding of whether MiBG is taken up by the heart or not (this is complicated by the fact that our hospital is now using a new form of the isotope "I-123" rather than "I-131" for any nb savvy readers out there, and also has a new scanner, so things just look a little different). So there is the possibility this spot is just normal activity in the heart. Results are still pending. But I had the feeling of: Okay this is it. The other shoe that we've been waiting to drop. And a big-old-rock-dropped-in-the-stomach feeling of imaging starting treatments all over again, but this time with a much, much smaller chance of beating it.

Good news is, Lina's CT is clear. Common sense says a spot as big and active as what I saw on MiBG would also be present on CT. However, we know one of the hallmarks of neuroblastoma is it's "heterogenous nature." Just a big word that means all neuroblastomas act differently. So we just exhale and wait for the radiologists report on the MiBG scan. He even said, "This is not a straight-forward scan" meaning, you can't really just look at the images and make a conclusion. We are hoping to have those results by Monday (really, today would be nice, but we're practicing patience!)

Lina also has a bone marrow aspiration and biopsy on Thursday. She's been looking forward to this round of scans so she could get a new Fisher-Price "Sweet Streets" house. And 3 i.v.'s in 2 days earned her her choice! Needless to say, she's happy! She's already picking out what she wants next round!

Please keep good scan results in mind for Lina. And send up healing thoughts for Anna, Matthew, Sabra, Kaitlyn, Eva, Christi, and Daniel, as well as strength for the families of our ChemoAngel buddy Jacob, John Russell, Toireasa, Annie, Gabbie, Matthew, and so many others....

Monday, October 20, 2003 12:40 AM CDT

**NEW PICS ADDED TODAY!**

I keep coming to Lina's page every day, meaning to write something, and then I don't. Partly because we've been enjoying a "normal" busy life with a new baby and guests (Gramma from Iowa for a week and now Baba and Deda from Serbia for awhile). Luka is my "high-maintainence" baby. He had a tough act to follow though. Lina was SUCH an easy baby. She literally never cried, and was just as easy going as can be. Luka is quite vocal!! But as we get to know him better, I see that some of his fussiness is just his way of talking and making his presence known! He is much more smiley than Lina was -- which is nice, because when he's not smiling, he has a frowny scowl on his face. But I've also had a hard time updating because I have just "had it" with cancer. There have been lots of children getting their angel wings recently, and it has...searching for words...and can't find the right ones....but kind of worn me out.

This is all wrapped up with Lina's upcoming routine scans. The first one is a CT scan scheduled for November 4. I remember asking the nurse practicioner during our education session the first week Lina was diagnosed, "How do parents live with the anxiety and fear that the disease will come back???" I remember trying to imagine waiting for test results. She said, "Well you just learn to live with it." True, but a load that weighs you down when you least expect it.

I have noticed myself feeling very -- again an appropriate feeling escapes me -- but we'll just say sad, for lack of a better word -- but I feel sad whenever I'm around a child of about 16-18 months (Lina was diagnosed at 16 months). I see so many things that I missed with Lina because we had bigger fish to fry. I also feel a lump in my throat whenever I see a 5 or 6 year old girl. There was a little girl of about that age getting some sort of scan (unrelated to cancer) when Lina went in for her first CT to determine what was wrong with her. At the time, we had no idea what we were dealing with, but I guess my heart knew it was something big, because I kept looking at that little girl, and I said, "What if Lina never gets to be that age?" I'm reminded of this lately at the strangest times. And then I think of all the families who are living this reality. Just no words to describe that.

Please keep a good outcome of this round of scans in your thoughts for Lina. And please check out www.NCNF-childcancer.com for more info and updates about the "Lunch for Life" fundraising effort.

Saturday, October 18, 2003 1:50 PM CDT

I keep coming to Lina's page every day, meaning to write something, and then I don't. Partly because we've been enjoying a "normal" busy life with a new baby and guests (Gramma from Iowa for a week and now Baba and Deda from Serbia for awhile). Luka is my "high-maintainence" baby. He had a tough act to follow though. Lina was SUCH an easy baby. She literally never cried, and was just as easy going as can be. Luka is quite vocal!! But as we get to know him better, I see that some of his fussiness is just his way of talking and making his presence known! He is much more smiley than Lina was -- which is nice, because when he's not smiling, he has a frowny scowl on his face. But I've also had a hard time updating because I have just "had it" with cancer. There have been lots of children getting their angel wings recently, and it has...searching for words...and can't find the right ones....but kind of worn me out.

This is all wrapped up with Lina's upcoming routine scans. The first one is a CT scan scheduled for November 4. I remember asking the nurse practicioner during our education session the first week Lina was diagnosed, "How do parents live with the anxiety and fear that the disease will come back???" I remember trying to imagine waiting for test results. She said, "Well you just learn to live with it." True, but a load that weighs you down when you least expect it.

I have noticed myself feeling very -- again an appropriate feeling escapes me -- but we'll just say sad, for lack of a better word -- but I feel sad whenever I'm around a child of about 16-18 months (Lina was diagnosed at 16 months). I see so many things that I missed with Lina because we had bigger fish to fry. I also feel a lump in my throat whenever I see a 5 or 6 year old girl. There was a little girl of about that age getting some sort of scan (unrelated to cancer) when Lina went in for her first CT to determine what was wrong with her. At the time, we had no idea what we were dealing with, but I guess my heart knew it was something big, because I kept looking at that little girl, and I said, "What if Lina never gets to be that age?" I'm reminded of this lately at the strangest times. And then I think of all the families who are living this reality. Just no words to describe that.

Please keep a good outcome of this round of scans in your thoughts for Lina. And please check out www.NCNF-childcancer.com for more info and updates about the "Lunch for Life" fundraising effort.

Thursday, October 2, 2003 6:40 PM CDT

No news is good news. It's been a long time without an update. Life is busy, but good. We enjoyed a week visit with Gramma here in Florida. It was lots of fun. After we dropped Gramma off at the airport, Lina was sniffing, sniffing, sniffing in the back seat. I finally said, "Do you need a Kleenex?" "No." More sniffing. "Then what's wrong? Why are you sniffing?" Lina informed me in her most patient way, "I'm just missing Gramma. That's how you show you're missing someone."

We are just giving a quick update to help out and jump on the bandwagon with a fundraiser for neuroblastoma started by a parent from our neuroblastoma internet support group. This father decided it was time for neuroblastoma to get the national attention it deserved. He calls the initiative "Lunch for Life" and is asking everyone to donate $5 (the cost of a lunch out) to neuroblastoma research and awareness. You then ask 5 people to donate $5 and ask them to tell 5 more people. On down into infinity, much like a chain letter. Had you ever heard of neuroblastoma before it affected someone you knew? Neither had I. Yet, neuroblastoma accounts for 15% of all cancer deaths in children. But only 7% of all cancers. It is notoriously difficult to treat, and even more difficult to maintain remission. This father -- joined by other parents and families across the nation and worldwide -- hopes awareness and fundraising will encourage research and better treatments for this disease.

Please check www.cncf-childcancer.org (the children's neuroblastoma cancer foundation, started by a family who lost their son to nb) for more info about donations. You can also visit www.sydneydungan.com to read more about the little girl that inspired this amazing idea.

Please donate and share the idea with others in memory of John Russell, Gabbie, Annie, Toireasa, Matthew, Nick and all the others who have gone too soon.

Friday, August 29, 2003 8:57 AM CDT

We welcomed our newest family member into the world on Sunday 8/24/03 at 7:57 a.m. Luka Martin Rak weighed in at 8 lbs. 13 oz. and 21.5" long (at 5'2" I KNEW there was a reason I was so much more uncomfortable than with Lina who weighed only 6#10oz)! We say Luka is a "less pretty" version of Lina -- he was pretty bruised from his cramped quarters, but looks just like she did as a newborn. Which is to say they look like Daddy. We are fortunate he is just as easy as she was too. We'll cross our fingers that we can say that months (and years!) from now.

Lina is enjoying being a big sister and is very helpful -- most of the time :-). Daddy has taken the week off, so Lina has still been able to enjoy her dance class; yesterday they went to Chuck E. Cheese (Lina's first time there, and she loved it!) and today they went in to Daddy's work to do some paperwork. She loves going to "Didelity" (Fidelity) to work on Daddy's computer.

All remains good health-wise with Lina. Her monthly blood counts were all well within the normal range. She had a Dexa Scan a few weeks ago (a bone density scan) to determine if we should continue Accutane - which can affect bone density. All of her chemo, transplant, and radiation treatments also have an negative (i.e., thinning) effect on bone density, so we didn't want to be contributing to that problem by opting to continue Accutane past the 6 month period most studies recommend. Her bone density ended up in the low range of normal, so we feel comfortable continuing Accutane and supplementing calcium intake. Now Lina has an excuse for wanting to drink milk ALL THE TIME! We won't have any trouble with calcium intake!!

Thank you for your continued thoughts and prayers. Please add some for a little boy in Iowa named Bret who is struggling with relapsed JMML (leukemia). I know your support would give his family a lift. You can visit them at caringbridge.com/ia/bret. And please continue to keep these little heroes in your thoughts: Matthew, Anna, Daniel, Sabra, and Kaitlyn, as well as those who lived so bravely: John Russell, Gabbie, Annie, Toireasa, Matthew, Brendan, Nick, our ChemoAngel Jacob, and too many others....

Monday, August 18, 2003 8:14 AM CDT

Our friend Daniel is doing great! His head mass disappeared, and the doctors have no explanation!! While a miracle like this always brings a huge sigh of relief and great joy, I can never help but wonder: why some families and not others? Another one of the more difficult aspects of living with cancer.

Not much new here; we are just (not so) patiently awaiting Luka's arrival. We thought of having Lina there for the birth, but decided against it -- just in the small chance of some kind of emergency happenning. She is just as happy to get to go to the neighbor's house, her friends Emma and Hannah. She hopes Luka is born at night, so she can "take a bath there and have a sleep-over!" I thought for sure she would want to be at the hospital with us. This is the kid who loves to watch "Trauma: Life in the E.R." and "Maternity Ward" - 2 reality shows on The Learning Channel.

I am participating in a fund raiser for ChemoAngels, a great organization that provides inspiration and encouragement to kids and grown-ups in treatment for all types of cancers. (See the link at the bottom if you're interested in becoming a ChemoAngel!) Please e-mail me if you're interested in purchasing one of Pampered Chef's most popular items with 40% of the proceeds going to ChemoAngels. I'll list the items here, but if you're unfamiliar with Pampered Chef, I can email you a copy of the brochure so you can see each item for yourself:

(1) Cutting Board (9 x 13") w/ Grip Pad to prevent sliding - $14.00
(2) Bamboo Spoon Set (set of 3) - $7.00
(3) Nylon Tool Set (large serving spoon and spatula) - $10.50
(4) Mini-Serving Spatula (I use this all the time! perfect for getting the first serving out of the pan) - $4.50
(5) Korintje Cinnamon - $6.00
(6) All-Purpose Dill Mix (salt-free spice blend) - $6.00
(7) Classic Scraper (guaranteed not to stain, melt or crack!) - $10.50
(8) Good Company Coffee (Pampered Chef's special blend)
- regular $8.50 / decaf $9.00
(9) Measure all Cup (contains all measurements in one handy cup!) - $9.50
(10) Adjustable Measuring Spoons (2 spoons measure from 1/8 t to 1 T) - $7.00

Thanks for your interest!

And thank you for continuing to remember Lina and her special friends: Daniel, Anna, Sabra, Matthew, Christi, Kaitlyn as well as those who lived so bravely: John Russell, Toireasa, Annie, Matthew, Nick, Gabbie, and our Buddy Jacob.

Friday, August 8, 2003 7:48 AM CDT

**Please add extra prayers and special energy for Daniel today. He is our friend from Minnesota. A mass was found on his head yesterday. His family is worried and devasted. His June scans were clean. Our hopes are that this is NOT nb and will be quickly resolved. Thank you.**

We've updated the photos, but these pictures don't show Lina's new haircut --- which she gave to herself! Luckily, she did a pretty good job. She cut her bangs, which Daddy (our resident haircutter around here) fixed up to look like we meant to do it. They were pretty short at first, but look good now.

We have decided to move to every 6 months for re-evals. It is good in some ways (less risk, esp. radioactivity from MiBg) and it seems to mean the risk of relapse is less intense now. Although we know that could happen at any time, even years from now. It is hard in some ways too, because even if you don't trust the results 100t's nice to see in black and white that there is no disease lurking anywhere.

I am participating in a fund raiser for ChemoAngels, a great organization that provides inspiration and encouragement to kids and grown-ups in treatment for all types of cancers. (See the link at the bottom if you're interested in becoming a ChemoAngel!) Please e-mail me if you're interested in purchasing one of Pampered Chef's most popular items with 40f the proceeds going to ChemoAngels. I'll list the items here, but if you're unfamiliar with Pampered Chef, I can email you a copy of the brochure so you can see each item for yourself:

(1) Cutting Board (9 x 13") w/ Grip Pad to prevent sliding - $14.00
(2) Bamboo Spoon Set (set of 3) - $7.00
(3) Nylon Tool Set (large serving spoon and spatula) - $10.50
(4) Mini-Serving Spatula (I use this all the time! perfect for getting the first serving out of the pan) - $4.50
(5) Korintje Cinnamon - $6.00
(6) All-Purpose Dill Mix (salt-free spice blend) - $6.00
(7) Classic Scraper (guaranteed not to stain, melt or crack!) - $10.50
(8) Good Company Coffee (Pampered Chef's special blend)
- regular $8.50 / decaf $9.00
(9) Measure all Cup (contains all measurements in one handy cup!) - $9.50
(10) Adjustable Measuring Spoons (2 spoons measure from 1/8 t to 1 T) - $7.00

Thanks for your interest!

And thank you for continuing to keep Lina and all the children fighting this disease in your thoughts and prayers: Matthew, Daniel, Christi, Anna, Sabra, Kaitlyn as well as those who fought so bravely: Gabbie, John Russell, Toireasa, Annie, Nick, Matthew, and our ChemoAngel Jacob.

Monday, August 4, 2003 1:29 PM CDT

We've updated the photos, but these pictures don't show Lina's new haircut --- which she gave to herself! Luckily, she did a pretty good job. She cut her bangs, which Daddy (our resident haircutter around here) fixed up to look like we meant to do it. They were pretty short at first, but look good now.

We have decided to move to every 6 months for re-evals. It is good in some ways (less risk, esp. radioactivity from MiBg) and it seems to mean the risk of relapse is less intense now. Although we know that could happen at any time, even years from now. It is hard in some ways too, because even if you don't trust the results 100t's nice to see in black and white that there is no disease lurking anywhere.

I am participating in a fund raiser for ChemoAngels, a great organization that provides inspiration and encouragement to kids and grown-ups in treatment for all types of cancers. (See the link at the bottom if you're interested in becoming a ChemoAngel!) Please e-mail me if you're interested in purchasing one of Pampered Chef's most popular items with 40f the proceeds going to ChemoAngels. I'll list the items here, but if you're unfamiliar with Pampered Chef, I can email you a copy of the brochure so you can see each item for yourself:

(1) Cutting Board (9 x 13") w/ Grip Pad to prevent sliding - $14.00
(2) Bamboo Spoon Set (set of 3) - $7.00
(3) Nylon Tool Set (large serving spoon and spatula) - $10.50
(4) Mini-Serving Spatula (I use this all the time! perfect for getting the first serving out of the pan) - $4.50
(5) Korintje Cinnamon - $6.00
(6) All-Purpose Dill Mix (salt-free spice blend) - $6.00
(7) Classic Scraper (guaranteed not to stain, melt or crack!) - $10.50
(8) Good Company Coffee (Pampered Chef's special blend)
- regular $8.50 / decaf $9.00
(9) Measure all Cup (contains all measurements in one handy cup!) - $9.50
(10) Adjustable Measuring Spoons (2 spoons measure from 1/8 t to 1 T) - $7.00

Thanks for your interest!

And thank you for continuing to keep Lina and all the children fighting this disease in your thoughts and prayers: Matthew, Daniel, Christi, Anna, Sabra, Kaitlyn as well as those who fought so bravely: Gabbie, John Russell, Toireasa, Annie, Nick, Matthew, and our ChemoAngel Jacob.

Thursday, July 17, 2003 8:34 AM CDT

Not much news to report. It has just been awhile since we updated, so I thought I'd post a new message. Lina is enjoying Bible School this week. It's so cute to see her singing the songs and doing the little dances. Bible School is from 6:30 to 9:00pm every night, and it's really made me realize how much my life revolves around Lina. (It's been nice to have a few hours to ourselves, but I find myself really missing her by 9:00!) Much more so than a "normal" child. I've thought about this alot when a family loses their child to cancer: not only do they go through that unimaginable event, the death of their child, -- they are also losing the structure of their lives. Even though our lives our returning to "normal" (whatever that is...) so much of what you do is focused on the patient. And certainly, so much of your mental energy is focused on them. When they are gone, there is suddenly not only a huge whole in your heart, but a huge hole in your daily schedule that only serves to remind those families of their feelings of emptiness. My heart goes out to all those families.

Lina had her procedure to remove a spot on her foot, and the pathology came back normal. We will be waiting to see if Sloan-Kettering agrees to evaluate Lina every 6 months, instead of every 3 months. Our docs here in Jacksonville are ready to move to 6 month re-evals. I'm ambivalent about the change at this point, so really just leaving it up to the doctors.

We alternate between days of feeling like this disease is behind us, to fear that it could return at any time. Maybe life will always be like this. And maybe that's not necessarily a bad thing; it really helps you keep your priorities straight. Lina has been asking lots of questions lately about death and dying: "How does Jesus take you when you die?" "Will I be able to see you and my friends if I die?" "Will I miss you?" Hard questions to answer at any age, but kind of surreal to answer at age 3.

Please continue to keep Lina and all the children fighting this disease in your thoughts: Matthew, Anna, Christi, Sabra, Kaitlyn, Daniel; as well as those who fought bravely against such terrible odds: John Russell, Gabbie, Annie, Nick, Matthew, Toireasa, and our ChemoAngel Jacob.

Tuesday, July 1, 2003 7:34 PM CDT

Lina has just returned from her evening at the YMCA with Daddy. She ran inside to tell me, "Mama, there was a song on the radio -- Who let the dogs out?? Woof, woof, woof." Now she's singing it to our dog Emma, and she's disappointed Emma won't bark at the right parts.

Lina is having a procedure tomorrow to remove a spot on her foot. She is already scared, saying, "It's going to hurt!" but she will have Emla cream (a numbing agent) on it and then get a local injection before they remove it. I've promised her a trip to the store to pick out more for her Fisher-Price Loving Families set if she's brave.

She's added another piece to this set for, drum roll please, finally sleeping in her own bed for a WHOLE WEEK! Before her diagnosis (at 16 months) Lina was a wonderful sleeper. She would even go into her room and go to her crib and say, "Night-night" when she was ready for bed. After our first stay in the hospital, she wouldn't step foot in her room. We eventually moved her crib to our room, but she threw a fit whenever we tried to put her in it. We tried lots of different sleeping arrangements after having her in bed with us got too crowded, and finally decided that a sleeping bag on the floor might seem less appealing and move her towards thinking about her own bed. She thought about it, alright, and volunteered one day, "When the baby comes, then I'll sleep in my own bed." When I asked her why she couldn't do it now, she just said, "I like sleeping on my sleeping bag." But last week, she and Daddy decided she would try her own bed for a night, and Gramma and Grampa promised they would send her a prize in the mail if she did. And you would think she's been doing it all along. I think this week has been the first time since diagnosis that I've actually slept through the night. Of course that will all be ending soon....

Lina is such a special child. I like to think I would have had a full appreciation of this even without the shadow of cancer hanging over our lives. But I know it gives me a richer appreciation of her, and much of what we have that I may have taken for granted in the past.

Please continue to remember these little heroes, Christi, Daniel, Matthew, Kaitlyn, Sabra, Robyn, as well as those who were so brave against such terrible odds: John Russell, Brendan, Annie, Gabbie, Toireasa, Matthew, and our ChemoAngel Buddy Jacob.

Monday, June 16, 2003 6:22 PM CDT

A belated Happy Father's Day to all the special dads out there. We had a wonderful Father's Day! We spent the day with our friends Kirk, Julie and Baby Jack, who just had a beautiful new pool put in. Lina enjoyed swimming, but wasn't so sure she enjoyed having to share toys with a little person. Luckily she will have some time to get used to a sibling before she has to worry about battles for the same toys.

We had a Level II ultrasound last week, and everything is normal. The perinatologist did say that he would surprised to see neuroblastoma this early, but it eased our minds anyway. The baby is measuring at 30 weeks, which puts us ahead of the due date of August 25 by 2 weeks. That would be nice, it is no fun being pregnant in Florida during the summer! Thank God for air conditioning! Speaking of which, ours broke down last week, and we had to shell out some painful bucks to get it repaired. But as much as I hated writing that check, it is worth every penny!!!!

We had a visit to the dermatologist today to check out a mole/wart/spot on Lina's foot. The doctor did a check of her whole body (Lina being all too happy to disrobe!) and decided to remove a couple other moles as well. With Lina's cancer history, they can't be too careful. She will have the spot on her foot removed in a couple of weeks, and we'll go from there. I think we've been to almost every specialist in the children's clinic now: eyes, ears, skin, mental health, not to mention getting every other body system scanned, x-rayed, poked and prodded. The doctors never fail to mention what a compliant, helpful patient Lina is, which has really been a blessing to us as parents, because we didn't have the trauma of seeing her be frightened and upset and crying every time she had a procedure. She really loves the clinic and the hospital!

Please continue to keep Jacob's family in your thoughts. As well as my fellow nb heroes: Daniel, Sabra, Kaitlyn, Anna, Matthew. And the heroes no longer with us: John Russell, Toireasa, Annie, Gabbie, Matthew, Brendan, and so many others....

Sunday, June 8, 2003 2:00 PM CDT

We are saddenned to tell you that our ChemoAngel Buddy Jacob left this world late Friday night. Please send very special thoughts and energy to his family as they learn to live their lives without him. He was a very special boy, who just turned 7 on Thursday. We will miss him greatly. His caringbridge site is www.caringbridge.com/mo/jacob.

And thank you for continuing to keep Lina and her fellow neuroblastoma heroes in your thoughts: Daniel, Matthew, Anna, Kaitlyn, Robyn, Sabra, as well as those who fought so bravely: John Russell, Annie, Gabbie, Brendan, Matthew, Toireasa, and so many others.

Sunday, June 8, 2003 1:54 PM CDT

We are saddenned to tell you that our ChemoAngel Buddy Jacob left this world late Friday night. Please send very special thoughts and energy to his family as they learn to live their lives without him. He was a very special boy, who just turned 7 on Thursday. We will miss him greatly.

And thank you for continuing to keep Lina and her fellow neuroblastoma heroes in your thoughts: Daniel, Matthew, Anna, Kaitlyn, Robyn, Sabra, as well as those who fought so bravely: John Russell, Annie, Gabbie, Brendan, Matthew, Toireasa, and so many others.

Wednesday, May 28, 2003 1:55 PM CDT

Another round of re-evals done, and thanks to all that positive energy out there, all tests are clean!! We have one more test that we just did today -- a urine collection that tests for catecholamine that can be released by n-blast tumors -- but since everything else is clean, this one is really just a formality. We are always grateful for Lina's health, but especially mindful today at the clinic when 2 of the other 5 kids there were relapsed neuroblastoma kids back in treatment. One of them has been battling for a long time, the other was actually diagnosed several months after me. Statistics (whatever they're good for...) say that the chance of survival after relapse is less than 1%. So please send extra special thoughts to those families battling relapse.

We also saw on another child's website recently that the average child lives just 287 days after a diagnosis of neuroblastoma. It's been just over 25 months since Lina's diagnosis. We hope her survival, and others like her on new studies, will make this statistic ancient history in a few years.

Someone recently asked me if I am nervous about the health of the new baby. And although we will have a Level II ultrasound in a few weeks (neuroblastoma *could* have a genetic component, and has been diagnosed on fetal ultrasound), I really am not worried. Not worried like I imagine my pre-diagnosis self being. Not worried like I'm sure I would have pictured someone in our shoes being before we entered the world of cancer. Even if something were to happen with this baby, we have learned that life goes on -- different than it was before, and changed forever -- but with fun, and laughter, and sadness, and joy, and all the stuff that is part of everyone's life. I honestly would not change a single thing we've been through with Lina. She has brought such joy into our lives. And the same will be true of this baby, too. No matter what comes along in the future.

Many thanks to the angel group leaving messages in the guestbook. There are so many wonderful organizations out there. That has definitely been one of the blessings of this experience -- seeing firsthand so many caring, thoughtful people. A parent from our n-blast e-mail list recently shared their frustration with people asking "what's wrong with him?" (her son has an orbital/eye tumor that is causing a black eye, same as Lina did when she was diagnosed -- a "classic" sign of neuroblastoma). I found people's questions always showed the good in people. Rather than staring, ignoring, looking away, people with the courage to ask were always caring in their responses. I can't tell how many strangers approached us in stores, airports, wherever, and asked if they could add Lina to their prayer list, told us they would keep her in thought. That is a small gesture that really means a lot.

And even if miracles don't happen for ALL our children, your thoughts really do lift the spirits of the kids and their families, and makes their lives more enjoyable, as a child's life SHOULD be! Please keep our ChemoAngel buddy Jacob in mind as he fights his second ALL leukemia relapse. And all my fellow nb heroes: Kaitlyn, Matthew, Anna, Christi, Daniel, Robyn, as well as those heroes no longer with us: John Russell, Matthew, Gabbie, Annie, Toireasa, Brendan, and so many others.

Wednesday, May 21, 2003 9:17 AM CDT

Tomorrow we will be done with this round of 3 month re-evals. Bone marrow aspiration and biopsy will be done tomorrow (for Lina the dread of getting an I.V. seems to be balanced out by the excitement of getting "sleepy milk" and seeing her favorite anesthesiologists!). So far, all test results look good.

Lina is now a pro at doing her scans without sedation. She did an hour bone scan, 90 min. MiBG scan (this earned her a Fisher-Price "Country House"), and a CT scan ALL BY HERSELF!! This earned her the Fisher-Price "Hotel" -- I guess we know what prizes she likes now. Because of the baby, I couldn't go in the room during the CT scan, and Lina just laid on the table like the biggest girl. She even fell asleep, she was so relaxed. Lina thinks she would like some other accessories for her new Fisher-Price set-up after the bone marrow procedure. I told her the hotel would have to be for both the CT and the bone marrow because it's a big prize, but I may cave in, especially if they have to stick her a lot to try to get an I.V. started. Because she's had 3 different I.V.'s in the past 10 days, they are running out of good vein options. Lina is usually pretty brave, but after one failed poke, she gets pretty anxious. So she might need the extra motivation of another prize!!

Lina and mama made it through a week of separation due to Lina being radioactive from the MiBG injection. Lina got to go to our neighbor's house who has a small home day care, and also a 3 year old daughter who Lina enjoys playing with. The week sounds like it went well, with just minor 3 year old squabbles, "She won't leave me alone!" followed by "Will you play with me??"

On Saturday we enjoyed Daddy's company picnic at a local water park. What a blast! Lina wasn't much into the water slides, but sure enjoyed swimming in the wave pool and wading pool. She also got to ride go-carts with Daddy and one of his friends from work. On one round they gave prizes to the 3 fastest drivers, and Lina and Daddy came in first!! She loves the go-carts, and can't wait til she's tall enough to drive one on her own.

Please keep our ChemoAngel Buddy, Jacob, in your thoughts. He just received more donor cells from his sister in an effort to treat his leukemia relapse. And as always keep my fellow nb warriors in your thoughts: Anna, Kaitlyn, Daniel, Christi, Robyn, Matthew, and Sabra. As well as the families of our little angels: John Russell, Brendan, Annie, Toireasa, Matthew, and Gabbie, and so many others....

Sunday, May 11, 2003 7:26 PM CDT

Happy Mother's Day to all mothers out there, no matter how big or small, or whether your children are with you or not, it's the most important job in the world!

We are borrowing this from our ChemoAngel Buddy Jacob's page, and thought it was appropriate for today:

>Just for this morning, I am going to smile when I see your face and laugh
>when I feel like crying.
>Just for this morning, I will let you choose what you want to wear, and
>smile and say how perfect it is.
>Just for this morning, I am going to step over the laundry, and pick you up
>and take you to the park to play.
>Just for this morning, I will leave the dishes in the sink, and let you
>teach me how to put that puzzle of yours together.
>Just for this afternoon, I will unplug the telephone and keep the computer
>off, and sit with you in the backyard and blow bubbles.
>Just for this afternoon, I will not yell once, not even a tiny grumble when
>you scream and whine for the ice cream truck, and I will buy you one if he
>comes by.
>Just for this afternoon, I won't worry about what you are going to be when
>you grow up, or second guess every decision I have made where you are
>concerned.
>Just for this afternoon, I will let you help me bake cookies, and I won't
>stand over you trying to fix them.
>Just for this afternoon, I will take us to McDonald's and buy us both a
>Happy Meal so you can have both toys.
>Just for this evening, I will hold you in my arms and tell you a story
>about how you were born and how much I love you.
>Just for this evening, I will let you splash in the tub and not get angry.
>Just for this evening, I will let you stay up late while we sit on the
>porch and count all the stars.
>Just for this evening, I will snuggle beside you for hours, and miss my
>favorite TV shows.
>Just for this evening when I run my finger through your hair as you pray, I
>will simply be grateful that God has given me the greatest gift ever given.
>I will think about the mothers and fathers who are searching for their
>missing children, the mothers and fathers who are visiting their children's
>graves instead of their bedrooms, and mothers and fathers who are in
>hospital rooms watching their children suffer senselessly, and screaming
>inside that
>they can't handle it anymore.
>And when I kiss you good night I will hold you a little tighter, a little
>longer. It is then, that I will thank God for you, and ask him for nothing,
>except one more day.............

We are especially remembering all the mothers and families enduring today without their children - John Russell, Annie, Gabbie, Toireasa, Matthew, Brendan & Hannah - there are no words to alleviate that pain.

Please keep Lina in your thoughts this week and next as she has her routine 3 month re-evals. She has bone scan and MiBG this week (so mama gets another mini-vacation since I can't be within 10 feet of her for at least 5 days until the radioactive isotope leaves her system....). Then CT and bone marrows next week.

Tuesday, May 6, 2003 11:35 AM CDT

You've probably noticed from Lina's page -- and I've definitely noticed from visiting other CaringBridge pages -- that "no news is good news." We've updated the photos with a couple Easter pictures.

Lina is doing great! She did give us a scare a few weeks ago when she decided to throw up without warning before going to bed. She must have had a little bug because she had also had a 4 hour nap that same day (more than twice as long as usual!). The vomiting just reminded us too much of diagnosis. However, we had a routine doctor appt. the next day with blood work, and everything checked out fine. Except that Daddy was very tired that day because he didn't sleep all night waiting for that appt!

Lina started ballet class last week. There are about 10 3-5 year olds in this class with one instructor. That instructor is VERY BRAVE! I peeked in the window a few times to see about one kid following instructions -- and no, it wasn't Lina. But she seems to enjoy herself, and it's good for her motor skills and coordination. She mainly just likes getting dressed up in the leotard, tights, and ballet slippers!

We've also started swimming at the YMCA Family Swim. Lina, who hates having her hair washed and screams like you're torturing her if water gets into her eyes, LOVES swimming. She never wants to get out of the pool. And she always sighs very contentedly on the drive home and says, "That was really great!!"

Please continue to keep all these brave kids in your thoughts: Matthew, Christi, Daniel, Anna, Sabra, Kaitlyn, our ChemoAngel buddy Jacob. As well as the families of our little angels: John Russell, Gabbie, Toireasa, Matthew, Brendan, Jacob, Annie, and so many others...

Wednesday, April 16, 2003 7:09 PM CDT

Today is the 2 year anniversary of Lina's diagnosis. It is always fun, but especially amazing today, to watch her do her normal 3 year old activities. Like pull almost everything out of her room (and believe me, that's lots of stuff!) and load it on the loveseat because "I have to pack my boat." I especially enjoy watching her imaginative play with all her little guys. Although she is getting too old to do this with an audience. Today she told me, "Stop laughing at me. And quit looking!"

I have been looking back over the past two years, and even we've lived through this whole experience, there are still times when it is hard to comprehend. There is no way to describe how your child's cancer diagnosis changes your life, but I was remembering some of my initial reactions and thoughts, and maybe sharing them will give you some idea:

**Cancer makes you stop buying clothes the next size up -- even when you see an unbelievable deal -- because you're not sure if your child will still be alive to wear them.

**Cancer makes you feel a sense of accomplishment and relief each time you X out a day on the calendar, and you haven't had to make a trip to the emergency room, go to the clinic, or stay overnight in the hospital.

**Cancer makes you do things you never would have dreamed you would be able to do. Watching Lina get a shot used to make me want to cry, about one week after diagnosis I was GIVING her shots.

**Cancer shows you a side of parenting you didn't even know existed...the need to put your child through painful procedures (sometimes helping to hold them down) without breaking down, feeling (too) guilty, and sometimes without even stopping your conversation.

**Cancer makes you wake your sick child up at 11:00 at night to see fireworks -- even though you know they really need their sleep -- because you're not sure if they will ever see them again.

**Cancer makes you an expert on getting vomit out of anything. Also, what nutritional supplements are hardest to get out of clothes (FYI - chocolate Ensure).

**Cancer gives you a knot in your stomach every time your child has an ache, pain, diarrhea, headache, fatigue, etc, etc, etc. When before you watched, waited, and really didn't give it a second thought.

**Cancer makes you understand way too many of the medical terms they throw around on "E.R."

**Cancer makes you afraid to form relationships with other cancer families because you know that some percentage of patients don't survive. At the same times, you crave the understanding and sense of belonging that comes from these friendships.

**Cancer makes you able to say "Well, things could be worse..." and really mean it.

**Cancer makes you never able to know the date off the top of your head ever again. I still sign checks "2001" because that was the last year when I really knew what year it was! Now I have to stop and think, "What month are we in? Okay, now what year is that?" For real. I mean it.

Please keep our ChemoAngel buddy Jacob and his family in your thoughts as they are, again, experiencing one of a cancer family's biggest fears: relapse. His web site is www.caringbridge.com/mo/jacob.

And as always, your thoughts mean so much to all the children and families battling neuroblastoma: Christi, Matthew, Sabra, Daniel, Anna, and those who lived bravely in spite of the odds: John Russell, Toireasa, Annie, Gabbie, Brendan, Matthew, and so many others...

Monday, April 14, 2003 10:43 AM CDT

Well, we are back in sunny Jacksonville! We hadn't been to Iowa since last summer, and really, summer is a much nicer time to be there! I did get to experience a snow storm -- with a power outtage -- and I sure did enjoy that! The snow was perfect for snowmen, so Grampa made a nice one, while I tromped around and made prints in the snow.

We had a nice, relaxing, low-key visit. I had a great time with my cousins. And mama did get to see a few old friends. We also met a new friend (although we feel like we know him...). He lives in Earlham, and has also been through a transplant as part of his treatment for AML leukemia. Collin is 4. We had a great time playing at the park while our moms talked and talked. It is always nice to be with someone who has "been there, done that." We've mentioned before some of the benefits of cancer (yes, benefits!) and this family-like connection with others who have been through the experience is definitely at the top of the list!

I am now busy playing with our neighbors, Emma and Hannah. I have been asking to play with them since we got home Saturday night at 11:00 pm! Emma is 3 and a half and Hannah is 6. We have a great time together!

I am feeling great and have nothing big on the horizon except my monthly doctor visit and blood counts next week. Please keep our ChemoAngel buddy Jacob in your thoughts. He is experiencing some unexplained leg pain right now. These unexplained aches and pains are very, very scary to a cancer kid's parents, so please concentrate on a quick resolution of this pain for Jacob and peace of mind for his family.

And please remember some of the other brave neuroblastoma warriors: Matthew, Anna, Kaitlyn, Daniel, Sabra, Robyn, Christi as well as those who lived bravely despite their disease: Matthew, Jacob, Gabbie, Annie, Toireasa, and John Russell.

Monday, April 14, 2003 10:43 AM CDT

Monday, March 31, 2003 11:10 AM CST

Hello from Iowa! Mama forgot how cold it is still in March, although this week is supposed to be up in the 60's and maybe even 70's. I've been having lots of fun playing with my cousins and just basically being the center of attention! My cousins, Leah & Lindsey, got to have a sleep over with me this weekend, and we really wore each other out. We had so much fun, with only 2 minor squabbles, not bad considering we had three 3-year-old and unders together. Mama was a bit embarrassed that all of the squabbles were, of course, caused by the one kid who doesn't ever really have to share, and who doesn't go to daycare to learn about that stuff.

Gramma and Grampa put a nice addition on their house that gives us lots of space to play in. My Great-Grandma Helen has come to stay for awhile since we're here. Mama is enjoying sleeping in, reading books, and staying in her p.j.'s til noon while everyone else entertains me.

We remember every day how lucky we are to have our health and to be together. As close as we have come to mortality, we realize how quickly life can change and how tenuous good health is. With all the troubles in the world, especially the conflict the U.S. in engaged in now, it should be a reminder to us all of how precious our lives are, how we should make the most of each day. Yes, it can be seen in a negative light; yes, it does make you wonder if humans will ever see peace; but to paraphrase Anne Frank, In spite of everything, there is still so much good in the world.

Please make the most of your life today. And remember those locked in their own daily war: Christi, Anna, Sabra, Daniel, Matthew, my ChemoAngel buddy Jacob, as well as those who bravely fought a losing battle: John Russell, Gabbie, Annie, Brendan, Jacob, Matthew, Toireasa, and too many others...

Tuesday, March 18, 2003 6:51 AM CST

We wanted to share some good news we got last night. Sloan-Kettering ran some tests on Lina's tumor sample to check on prognostic indicators. These tests look at the actual DNA of the tumor for certain factors, some of which are associated with better outcomes. The only test they could run on her particular sample was something called ploidy. I won't even try to explain it, because I really don't understand it myself. Suffice to say, it looks at copies of something in the DNA. Lina's ploidy was favorable!

It may seem odd that we are so excited by this, but the feeling is something like playing a poker game where you're betting all you have, and you get a surprise sneak peek at your most formidible opponent's hand. And you see that you're holding better cards! I don't know if there are actual statistics that break down survival rates according to prognostic indicators. The 30-40% survival rate is for Stage IV neuroblastoma overall. But this news is very encouraging!

Lina and mama are leaving for a trip to Iowa next week. "After two more doctors" as Lina says. She has a doctor visit (just her regular monthly checkup and blood work, as well as a visit to the infectious disease specialist), and I have an OB appt. with ultrasound. Lina has decided she wants a sister, and we will find out if she gets her wish.

Please continue to keep in mind those battling this tricky disease: Christi, Daniel, Sabra, Kaitlyn, Anna, Matthew, and my ChemoAngel Buddy Jacob, as well as the families of our little angels: John Russell, Toireasa, Gabbie, Brendan, Annie, Matthew, Jacob, and too many others....

Tuesday, March 11, 2003 1:52 PM CST

Lina continues to do well. We still haven't worked out the TB issue (no, she doesn't HAVE Tb, but was exposed to it...), so she continues to take the prophalactic meds. Hopefully this will be resolved soon.

Lina and mama enjoyed a trip to the zoo today. It has been raining and raining and raining here for about 2 weeks, and today was a gorgeous sunny day. Just had to take advantage! Lina first wanted to see the lions, who of course were sleeping, but she also thought the visiting butterfly exhibit was cool. She got to hold one on her finger!

This time of year, as Easter approaches, always puts us in a thoughtful mood. Lina was having symptoms that led her to the pediatrician on Good Friday of 2001, a nervous weekend for Easter, and diagnosis on the following Monday. So Easter is especially bittersweet. As Easter is a time of miracles, we thought we'd share some of the miracles of Lina's life in our entry today:

** Lina was the 1st child our doctors in Jacksonville had tried on a new chemo protocol that we were told was "very intense" and had the potential for "lots of bad side effects" (including short term, like hard-to-control nausea/vomiting, and long-term, like possible heart damage, highly probable hearing loss, cognitive issues, etc.). Lina sailed through chemo, acting pretty much like a normal child, except for her wonderful medical vocabulary as a toddler, and her intense interest in medical procedures! So far, she has shown no long-term side effects either.

** One of the common long-term side effects of high-dose chemo (such as transplant, and remember, Lina had two!) is mouth/jaw/dental problems. This can be painful and make it difficult for people to eat, swallow, etc. I was recently reading something that said "virtually 100% of patients exposed to high-dose chemo will have these problems." That statistic jumps when the patient receives radiation to the jaw/face/skull (again, that's Lina!). Lina shows no problems! Doctors at Sloan-Kettering said we should be seeing these problems already if they were going to be an issue.

** Lina had heavy tumor involvement in her face and skull, as well as her liver. Places where neuroblastoma is known to be resistant to chemo. As one of the NYC docs put it, "We certainly don't like to see disease there." (and this, about a disease no one likes to see anywhere!!) Doctors have since said that her tumor response to chemo is a good indicator of success. She has been NED (no evidence of disease) since her post-transplant scans in Jan.2002!

** Neuroblastoma is a disease with a notoriously low survival rate. Our first indication of prognosis (April 16, 2001, when we were informed of her disease) was a survival rate of 40%. Each conversation with that same doctor (over the next week of her first chemo) had that number dipping lower and lower. It's pretty standard now to hear "survival rates of 30 - 40%" 10% doesn't sound like that much of a difference, but just imagine if that were your child. Which number would scare you more? Which number would give you more hope? That Lina is thriving today is amazing.

** Along those same lines, it is easy to forget, especially during treatment, that some children don't ever clear. Some children die due to toxicity from chemo or transplant. Some children die of infections when their counts are low due to chemo. Some children's tumors don't respond to treatment and keep growing. They never make it to transplant and post-transplant scans. It's easy to assume that the fight for survival comes IF there is a relapse. We tasted a bit of this reality when Lina's marrow did not clear according to protocol. Our doctors in Jacksonville said they had never had a child whose marrow didn't clear by the 3rd round of intense chemo. (Every parent loves hearing how special their child is....but not in this context!!) Lina's protocol (drugs/combination of drugs/dosages) was switched and she finally cleared after 5 rounds of chemo.

** There is high risk of relapse in the first 6 months to a year after transplant. That is, some patients achieve a remission (this is actual "medical speak" -- people are said to "achieve a remission" precisely because that is such a big achievement!), but relapse quickly. We made a "mental deal" with ourselves that if Lina made it past a year, we had a good fighting chance. We're at a year + 3 months past transplant now.

** That doesn't mean that life is back to "normal." There is no way to describe the way a cancer diagnosis changes your life. But it does change your life, forever. And many of these changes are for the better! There are many good ways it changes your life. Your focus on the "little things" is sharper. It's easier to appreciate a beautiful day, your child's excitement at going to the movies or swinging on the swings or going to Sonic (that's a really cheap drive up restaurant for you poor people who don't have it!) It's easier to enjoy reading a story together, "s-nuuuuggling" on the couch. It's also harder (I'm sure I'm not the only one...) to see stories about child abuse, to witness people mistreating their children at the grocery store, to see that there are people who don't fully appreciate what they have. A cancer diagnosis makes it hard to keep one's big mouth shut!

But one of the gifts of cancer is that it can change other people's lives for the better, too. Not just the family affected. One of our hopes is that you can appreciate your own children more fully. Appreciate the life you've been given. Appreciate the struggles you have, yes, even the struggles, and be thankful they don't include a weekly schedule of poisoning your child's body in the hope that one evil will triumph over another; appreciate that your 3 year old doesn't even know how to say "CT scan," "i.v." or "bone marrow transplant;" appreciate that your greatest probable threat is not bankrupcy, losing your job or house, divorce, or debt, but the thought of cancer returning and having to watch your child die.

And remember that although all parents have hopes and dreams that their children will achieve greatness, the greatest thing about them has already happened....they were born to you. You were trusted to watch over them and to love them as they are. And, if in addition to that, they are healthy, you have all you need.

Please remember the other families that live this reality, and the miracles it brings, everyday: Anna, Kaitlyn, Daniel, Christi, Sabra, and our ChemoAngel Buddy Jacob. As well as the families of our little angels: John Russell, Toireasa, Annie, Gabbie, Brendan, Matthew, Jacob, and too many others...

Wednesday, February 26, 2003 6:47 AM CST

**NEW PICTURE ADDED 2/25/03**

I made it through this round of re-evals with flying colors! All my scans and bone marrow tests are clear! Thank you for keeping that in your thoughts for me. Now we just have to get this TB thing worked out.

Since I'm a non-responder to the skin test, I am taking the TB meds (something called INH, with a long, hard-to-pronounce name). But next week we should have an appt. with the infectious disease specialist and we'll get a better idea of what the game plan is. So far the word is I will take the INH for 3 months and be re-tested. Apparently, the problem could be that since my marrow is so immature (only a year and a couple months old after all) and so tired (after all my marrow and I have been through) that my body just won't mount a response to the skin test right now. But maybe with time, it will.

I got a special box in the mail from my Great Aunt Judy yesterday. It had lots of little "prizes" in it, but my favorite was a little Ronald McDonald figure. I told mama, "Ronald Donald lives in my tummy and he makes all my cancer go away!" I seem to be confusing Ronald McDonald and Jesus -- who I also say lives in my tummy -- but that's easy for a 3 year old to do -- Ronald McDonald has been very good to us, letting us stay at his house in NYC and all.

Please add some extra energy to your thoughts for Matthew, a little boy with neuroblastoma who is needing some more help to clear his marrow so he can move on to surgery and transplant and get rid of all that yucky disease. Please also add Tessa to your thoughts. She is a 13 year old who went through transplant right before I did. She has relapsed with AML leukemia and needs to have an unrelated transplant this time. But she has developed a fungal infection in her sinuses. Fungal infections are VERY DANGEROUS to people with impaired immune systems. Please visualize Tessa clear of the fungal infection, prepared to go into her next transplant, with no return of this vicious infection. And as always, your thoughts keep us all strong, Anna, Kaitlyn, Daniel, Christi, and my ChemoAngel Buddy Jacob. As well as the families of our little angels: John Russell, Toireasa, Annie, Gabbie, Brendan, Matthew, Jacob, and too many others...

Friday, February 21, 2003 9:40 AM CST

Happy Friday to everyone. We made it through all my testing. Yesterday was my bone marrow aspiration and biopsy. Our hospital uses a short acting, general anesthesia (propyphol) for this procedure, so as terrible as it sounds, it isn't too painful. Sometimes afterwards I can be very sore, but yesterday I felt great! My favorite part of "procedure clinic" (see how these grown-ups think they're tricking us by calling things these funny names??) anyway, my favorite part is seeing the anesthesiologists and their nurses. They are some of my favorite doctors, and I don't get to see them all too often, so it's very special when I do. Yesterday was my favorite, Dr. Collins and some of my favorite nurses who gave me my "sleepy milk" (it's white and looks like milk!).Since mama STILL can't be around me, Daddy took me to procedure clinic. He helped me call mama and yell, "Mama!! Dr. Collins is here!!" You would have to see to really understand and appreciate how special all these doctors and nurses are. They make all the kids feel so special and really help make what can be a scary situation actually be FUN!

And speaking of fun, Daddy and I had a date to the movies this week and saw "Jungle Book II." We laughed and even cried a little bit at the end. I loved it! Now I can be heard around the house singing, "I wanna walk like you, talk like you, too-ooo-ooo."

The results from my TB test were undecided. So next week when we meet with the doctors we will have to decide what to do. The TB skin test is a little shot of something under your skin on your arm. If there is TB in your body (meaning you were exposed and it's dormant in your body) your skin shows a reaction. But some people are "non-responders" even if they are carrying the bacteria. So I got a shot in my other arm -- some sort of yeast, I think -- that EVERYONE is supposed to respond to. That tells the doctors is you're a "responder" or "nonresponder." Well, one guess what I am. That's right, a nonresponder. So now I may have to do the meds (we've heard they're nasty, with some unpleasant side effects, and you have to take them for a loooooong time), even though I may not be carrying the TB bacteria. So we'll just have to go with the flow. Cancer is a great reminder that we are not in control -- that whole "Let go and let God" saying.

Thank you for continuing to follow my journey and for keeping me and my friends, Anna, Daniel, Sabra, Kaitlyn, Matthew, Crawford, and my ChemoAngel Buddy Jacob, in your thoughts. And the families of our angels need your thoughts just as much, especially Gabbie, John Russell, Toireasa, Matthew, Brendan, Jacob, Annie, and so many others...

Tuesday, February 18, 2003 7:15 PM CST

Today is day #2 of my 5 day separation from mama. So far, so good. I'm taking it in stride, as I do most things. I seem to understand that being next to mama could hurt the baby, so although I like to push the limits a little bit (I am 3, after all...), I don't actually go up next to mama. I just say, "I want to be near you!" and then I sort of inch my way toward her. Mama and daddy aren't very good about not encouraging me, they always seem to laugh when I do this!

We got good news late Friday evening (a very surprising, and a little bit scary! phone call). Mama and I were in bed -- we really need our beauty sleep these days -- and the phone rang. We heard Daddy say, "Yes? Yes? Yes?" in kind of a nervous/who are you kind of voice. Then he said, "OH! You really made me nervous!! Thank you!" and hung up. The radiologist (a doctor who specializes in interpreting scans) called us at home to tell us the results of the CT and bone scan -- CLEAN! -- so we wouldn't have to wait all weekend. She said the day had gotten away from her, and she didn't look at the scans til after 6, then she went home to her 2 little ones, and she just had time to call us then. We usually don't even talk to the radiologist. They report the results to the oncologist and then we meet with them to discuss. But she said she had talked to Dr. Pitel (one of our oncologists) and he agreed she could call us at home, so we wouldn't worry all weekend. Just one more reason why we love our hospital!!

I have MiBG tomorrow (like a bone scan, but specific to n-blast) and then bone marrows on Thursday. Tomorrow they will also "read" the results of my TB skin test. Every little cough is now seeming like more than just a cough.

I have made everyone so proud of me: I did my CT without sedation (been there, done that before) and also my bone scan! CT scans are pretty quick. They do almost my whole body, and it only takes about 15 minutes. Bone scans, on the other hand, take at least an hour, and you have to lay very still, strapped to a table. Then a machine (it sort of looks like a great, big flat screen TV) goes over and under your body to take pictures. At one point during the scan, for a minute or two, it is literally about 1 inch from my face. I was the biggest, and bravest, girl. I took my own movies, and just watched Kipper and Barney and laid very still. Javier, the nuclear medicine man, said he had never seen a child so young do it without sedation. Sometimes they even have to sedate adults because they get too nervous!

For being so brave, I got a special prize: a stuffed kitty in her own special kennel/carrying cage so I can take her to the doctor. I played and played and played with her when we came home from my scans. After about an hour of playing, I went to Daddy in the office and told him, "I am soooooo happy with my present!" I don't even care that it's a hodge-podge of thrift store/recycled presents/stuff I already owned!

Please continue to keep good test results in your thoughts. And remember all my friends, Anna, Sabra, Kaitlyn, Crawford, Matthew, Daniel, Christi & my ChemoAngel buddy Jacob. And please continue to send strength to the families of our little angels: Matthew, Brendan, Toireasa, John Russell, Annie, Jacob, Gabbie, and so many others...

Wednesday, February 12, 2003 1:50 PM CST

First a big "Welcome to the World!" to my brand new, and very first boy cousin, Logan Martin Ingraham! Born 2/11/03 at 5:30am and weighing in at 8#10oz and 19 inches. He joins our illustrious line of miracle children: first me, of course; then my cousin Leah, a much anticipated but pretty unexpected adoption; then cousin Lindsey, mud in the eye for the 2 specialists who told Aunt Mimi and Uncle Jon they'd never have children; and now, Logan. As you can see, we may be in the market for some "L" names!

We've added a new feature to our site: we'll be searching for, and rotating links, to various charitable and volunteer organizations involved with pediatric cancer. We hope it will inspire some visitors to get involved!

Well, we may have spoken too soon about "no more treatment." It seems I may have been exposed to TB. Although I'm a year and 2 months out of transplant, and technically my immune functions have returned to normal, apparently us cancer kids are still not "normal." So today I had to go for a looooooong clinic day for chest xrays (clear) and prophalactic meds. I will also have to do the skin test, but the necessary ingredients couldn't be tracked down in the hospital or pharmacy, so we'll have to wait til Monday. Hopefully this is the other shoe that mama and daddy always feel is going to drop, rather than having bad outcomes from my re-evals next week.

We'll share a funny story with you to share my fun, if slightly quirky, personality: I have a special baby that I've had since I was a newborn. She has been through all my treatment with me and is sometimes better than any painkiller or special medicine I could get. At one time I had 3 of these same babies (so I never had to go without), but of course, over time, with all our hospital stays and travelling, we're back down to one. The other day, mama was doing some laundry right when I was ready for bed (my most special time with Baby). She decided my Baby needed to be washed, and tried to give me the last-resort-backup, that sort of looks like my Baby but ISN"T! I was pretty easy going about it, and mama thought she'd gotten away with it. But after a few minutes of smelling this baby (yes, smelling it...for some reason, I like to do this, and if Baby isn't nearby and I need some comfort, I'll put my nose on mama or daddy and take a good whiff of them!). Anyway, I smelled this baby a few times, and said in my most whiney, teenage sounding voice: "Mama! I can't smell this baby! This isn't my special Baby! I need my SPECIAL baby!" Well, mama had to laugh, and give me a kiss, but she STILL didn't give me my baby until it was clean.

We have been reminded lately to treasure these small moments, which are really the most important parts of life. There have been way too many relapses and deaths in our extended neuroblastoma family lately. It seems every day, another child is fighting relapse or fighting for their life. It is a too costly reminder to all of us to seek out these small moments and give them the importance they deserve. A touching example is one little guy who came home to spend his final days surrounded by his family. They had not given up hope, but accepted that the end was near. What was he wishing for? The only thing he wanted to do was snuggle with his dad and have a fire in the fireplace. Sounds pretty wise, huh? But how many of us let other unimportant things get in the way? Today, search for those small moments, and make them grand.

Please focus on a positive outcome for my upcoming tests (actually positive is a bad word in cancer, but you know what I mean...). And keep all my comrades in battle in your thoughts: Anna, Kaitlyn, Crawford, Sabra, Matthew, Christi, & Daniel, my ChemoAngel Buddy Jacob, as well as the families of all our angels: John Russell, Brendan, Matthew, Toireasa, Annie, Gabbie, Jacob and so many others....

Monday, February 10, 2003 2:44 PM CST

Well, we made it home safely! We weren't sure if we were ever going to get out of the clinic on Friday! It was one of those days, and by the time I finally got hooked up for the 3f8 infusion it was almost 2:00. (We were usually home by about 2:30...) Friday we had a little snafu, but luckily mama caught it fairly early: the 3f8 infusion runs over a 1/2 hour with an additional 30 minute "flush" (that's where saline is run through the line to get all the meds through the tubing). Well about 15 minutes into my 3f8 infusion, mama noticed a puddle on the floor. A little detective work showed the nurse had never hooked that line up to my i.v. fluids! So we had to wait for a dispensation from the God of the 3f8 medicine in order to start again. But at least no mixup the next time!

Maybe since it was hopefully my last time there, they just wanted to keep me a little longer! It feels funny to say treatment is over. Maybe we're just superstitious around here. But we're very careful about what to call my status now. Mama and daddy just say we're all done with treatment for now, and hopefully for ever!

This week I have a CT and bone scan on Thursday. Then MiBG next Thursday and bone marrows the following week. We'll keep doing this every 3 months for at least another year. Daddy and I are going to spending lots of quality time together over the next few weeks because mama can't be around me. (Drum roll please, you saw it here first....) I will be having a new brother or sister in late August/early Sept., and because the bone scan and MiBG are radioactive, mama can't be with 10 feet of me (literally). She may have to take a little vacation, because I don't know if I will be able to understand why I can't sit by mama or have her hold me.

Please focus on a positive outcome for my upcoming tests (actually positive is a bad word in cancer, but you know what I mean...). And keep all my comrades in battle in your thoughts: Anna, Kaitlyn, Crawford, Sabra, Matthew, Christi, & Daniel, as well as the families of all our angels: John Russell, Brendan, Matthew, Toireasa, Annie, Gabbie, and so many others....

Tueday, February 4, 2003 8:21 AM CST

We are hopeful that I have a HAMA again (that's the "anti body" to the antibody treatment -- and a HAMA theoretically shows that my body is recognizing how to fight nb on its own...). I didn't have any pain yesterday, but boy was I a stinker. Complaining about everything, there was just nothing that made me happy. I finally was more myself by about 9pm when I got to run around with a bunch of kids after dinner.

Today we're going to try doing no pre-meds before the treatment. Mama's afraid it might be making me too cranky and overtired. Everyone gets benadryl and morphine before the treatment even starts. Unfortunately, both meds can make you very cranky and unreasonable.

If I do have a HAMA, this might be the last time we have to come to Sloan-Kettering for treatment! We do enjoy our weekends here though. There is so much to do. This weekend we went to the Museum of Natural History to see the dinosaurs and then on Sunday we spent a lot of time at the HUGE Toys R Us in Times Square. I rode the ferris wheel and had a really fun time.

We have met some wonderful new families here. Because Sloan-Kettering is one of the top institutions for neuroblastoma, many of the families are in treatment for the same disease as me. It's amazing how many stories we hear that parallel ours. Please keep all these families in your thoughts, as well as the families of those who fought bravely against such overwhelming odds....

Thursday, January 30, 2003 at 09:22 AM (CST)

Greetings from NYC! My HAMA definitely went away, which remember from our last "lesson" (the last entry), this means I am having pain. Yesterday my pain was a little better, but I did have a lot of hives. I felt so crummy yesterday that I didn't even feel like going ice skating at Rockefeller Center. We had signed up to go with the House, and I was looking forward to it all day, but when it was time to go, I told mama, "No I just want to stay with you and rest." So that's what we did.

The good news from this trip, is that I am a model 3F8 Monoclonal Antibody patient. Theoretically (this is still a Phase II study -- more on that in a minute....), but theoretically, a person's immune system should react to the antibodies by forming a HAMA, thus saying, "OK we recognize this stuff is foreign, and we're going to fight it!" And that's what my body's doing everytime I get a "HAMA". Then you're supposed to lose the HAMA to be able to go back to treatment and train the body some more. And the news is (although always subject to change, we've learned...), if I get a HAMA after this round, that's just what the doctors want, and I don't have to come back again!

We mentioned 3F8 is a Phase II study. There are 4 phases in cancer treatment studies. Phase I is testing the toxicity of a treatment (like chemo combinations, dosages, or other treatments like monoclonal antibodies -- to see if the body can handle them). Because there is no data on whether these treatments are safe or not, Phase I treatments are only available to people for whom standard treatment hasn't been successful.

Phase II has been tested for toxicity (so they know what levels, dosages, etc are "safe"), so studies are conducted to find out whether the treatment actually works or not. Basically by the time a drug gets into study, everyone is hopeful it works, but that doesn't mean it will actually do what they want it to do. So 3F8 is in Phase II, meaning we are all hopeful but not sure if it will do what it theoretically should do.

Phase III compares different effective treatments with one another. For example, two different chemos that they know are effective might be compared to one another to see which one is most effective, and most safe.

Then there's Phase IV, but basically by the time something gets to Phase IV, it's just "the standard." So no one talks about what phase it's in. There is always lots of research going on in peds oncology, so things are always changing. Right now the Phase IV Standard is chemo (different combinations are acceptable, surgery to remove primary and/or other large masses, high dose stem cell rescue (transplant, I had two, which is not what they do everywhere -- at one hospital there are actually studying "triple tandem" tranplant which means 3 transplants in a row), radiation, and Accutane therapy.

Okay lesson done for today! As you can see, we're kind of in uncharted territory here. Hopefully in 10 years we'll be able to say we were one of the brave pioneers. And to show people a perfectly healthy and happy neuroblastoma survivor! Please keep that in your thoughts for me and my special friends, Anna, Daniel, Matthew, Sabra, Kaitlyn, Crawford. And continue to send the families of our little angels your love and support: Brendan, Matthew, Gabbie, Annie, Toireasa, John Russell, and so many others...

Thursday, January 30, 2003 at 09:22 AM (CST)

Wednesday, January 22, 2003 at 07:29 AM (CST)

Today is Neuroblastoma 101:

We found out yesterday that I'm finally HAMA negative! Which means it's time to return to NYC for my antibody treatment. Just a quick refresher (we know how hard this stuff can be to remember...): the antibody treatment at Sloan-Kettering is made from mouse proteins that attach to a specific protein on neuroblastoma cells and "teach" the immune system to see it as foreign, and therefore, destroy it. So in theory, if the body is trained correctly, my own immune system should be able to handle any nasty cells before they have a chance to get out of hand. And please don't ask, "how does the antibody treatment work if there is no neuroblastoma in the body?" That is a question the doctors don't answer very thoroughly, and we don't like the answers they give....something about undetectable amounts of neuroblastoma left in the body that scans and bone marrow biopsies can't measure. We don't like that answer. We prefer to see me as cancer-free (remission), rather than the neuroblastoma jargon: no evidence of disease (NED).

The antibody treatment is also very painful because the antibodies not only attatch to n-blast cells, but also to nerve cells (remember, neuroblastoma is a cancer that arises from nerve tissue; specifically the peripheral nervous system -- so that would be anywhere in the body except the brain and spinal cord, although it can be there as well, it's just not as common). One of the big players in the peripheral nervous system is the adrenal glands. We all have 2 that sort of sit on top of the kidneys and do things like give you that adrenaline kick when you watch a scary movie. We all have 2, but I now have one. We'll try to put a picture up today of "where they took the cancer out." Anytime I hear mama and daddy talking about my "nerbastoma" I pull up my shirt so everyone can see.

Anyway...back to the lesson...the antibody therapy--called for some unknown reason 3F8--also attaches to nerve endings. Then, because it's a foreign substance, the immune system attacks, and it causes A LOT of pain. That's why when I've started developing a HAMA (Human Anti-Mouse Antibody), mama knows it because I don't feel any pain. Having an antibody to the antibody (are you still with us??) causes the immune system to destroy the treatment (the 3F8 antibody) as soon as it enters the body. That's why we send blood work to NYC and can't return to treatment until it's "HAMA negative."

The pain is hard to describe. Little people like me mostly just scream. Sometimes I've said, "Oh my mouth," and held my mouth really funny. The nurses say they notice there is often intense pain where there used to be tumor. I had a big tumor in my right mandible (jaw). The doctors say that isn't the case (tumor specific pain), but that's a lesson for a different day.

Since most -- about 80% -- of "nerblastomas" originate in the adrenal gland, it makes sense that almost everyone experiences "intense" abdominal pain. One adult described it to mama by saying, "It's as if there is something inside me (her stomach) and it's trying to tear it's way out. It doesn't help to stretch out or curl up, it's just constant pain." Luckily, the pain, for me at least, is limited to the actual infusion of the 3F8 (an hour and a half infusion). And for me, and most kids (and yes, there are a few VERY unlucky adults with n-blast as well), the pain usually comes just during the last half hour of the infusion (but believe me....that's enough!).

Part of the treatment is also an injection or infusion (injection being a shot, infusion being IV delivered), of something called GM-CSF. It is similar to Neupogen -- (which some of you may have heard in the news lately related to Rob Lowe. He went on some talk shows and talked about his dad's Neupogen therapy during cancer treatment and how it saved his life, which it really does. However, the big stink was, Rob Lowe got money from the Amgen company, the makers of Neupogen, so it was basically a commercial, when he made it just seem like incidental small-talk)...ANYHOO, Neupogen is given to some cancer patients, n-blast among them, to boost white cell production when blood counts are at their lowest during chemo. You know about cancer patients being immuno-suppressed and very suseptible to infections. Those infections, from germs that are always all around YOU, but that your body fights off with no problem, can be very dangerous. That's because during chemo, white counts -- the infection fighter -- can be zero (normal being 6 - 12). I have JUST returned to a normal white count after being out of therapy for a year. But back to the GM-CSF. I get this shot for 5 days before -- don't worry, I'm a pro -- mama gives it to me by herself and I just sit real still -- and then an infusion of GM every morning before I get the 3F8. The theory is that it stimulates immune function to help the antibodies teach the body to fight the neuroblastoma.

3F8 as well as other antibody treatments out there, are technically called "monoclonal antibody treatments" and there are a lot of these treatments in studies for lots of different kinds of cancer. Mama and daddy really believe it's the "final frontier" of cancer treatment, where you actually involve your OWN body in fighting the cancer instead of just relying on poisons (chemo & radiation). Those poisons definitely have their place -- a bad disease requires an equally bad treatment, is how we rationalize it -- but it's just not enough. Especially in a disease like neuroblastoma where as many as 60% of kids relapse within 2 years of discontinuing treatment.

So our final part of the lesson today is this: Please include cancer organizations in your charitable giving. Cancer is the #1 cause of death in children (more than AIDS, congenital diseases, and accidents COMBINED) but its federal funding is lumped in with adult cancers. We wish no one had to experience a cancer diagnosis, but those adults out there have some loud voices (for lobbying) and adult cancers get the majority of the federal monies. Then each childhood cancer gets what's left over to distribute amongst themselves. Neuroblastoma is the 3rd leading cause of cancer death in children, but gets relatively little funding. Think about it...had you even heard of neuroblastoma before you knew someone diagnosed with it?? But of course you had heard of leukemia, Hodkin's disease,etc (ALL leukemia -- the most common childhood leukemia has an 80% cure rate; Hodkin's, a type of lymphoma, has a 90% cure rate!!).

Those diseases have pretty good outcomes now, precisely because of research money. So include cancer funding organizations in your charitable giving: either research organizations (visit nccf.org) or organizations that help families access "experimental" treatments (there are many associated with the airlines -- for example, donating your frequent flyer miles so that a family can fly for free to distant treatment). Or give to organizations like Ronald McDonald House or Target House (you can do anything from donating supplies like laundry detergent, to actually "buying" a room so that a needy family doesn't have to worry about paying their nightly "donation"). In addition, although we've never been there St. Jude's Hospital is a "free" cancer treatment center that does some of the leading work in n-blast research (along with Sloan-Kettering, CHOP = Children's Hosp. of Philadelphia, and one or two others). No one at St. Jude's is ever denied due to financial or insurance issues. And one of the n-blast families we know says they are wonderful, they arrange EVERYTHING for the families, from housing right down to a personal contact, which is so important, especially when being treated away from home.

We feel so very fortunate to have been treated at a wonderful hospital, and to have the resources (insurance, financial, and intellectual) to find the treatment we think is best. We say intellectual -- I'm sure you understand the first two -- because once you finish "convential" treatment, you are pretty much on your own. That's why -- final appeal here! -- organizations like CaringBridge are so important (Yes! CaringBridge is run strictly by donations, and you can include them in your charitable giving too!!).

Somehow you find other families, often through CaringBridge, and there is alot of very important info you can learn on these free websites. We know a lot of people who seek treatment at one institution or another based on what they've read on someone else's CaringBridge page. And it provides a wonderful, yet intangible, support to patients and families. Yes, there are days when we just look to see who has signed the guestbook. It always gives us a little lift. And for those "silent" supporters (we know you're out there, and we'd really like you to sign in!!), we can just look at the # of visitors and feel the energy. But we like it "extra-much" as Lina says, if you just sign in and say hello. And it's especially nice to hear from other families living in this strange world of cancer. We really like to see those people put their own websites somewhere in their message so we can go visit them, too.

Please visit some of our friends, and give them the free gift of your support and energy, our friends from here in JAX: Sabra, Kaitlyn & Matthew (my friend who is newly diagnosed, no website yet, just include him in your thoughts); some of our friends from Sloan-Kettering: Anna (also no website, but just think about a really wonderful family in Indiana), Crawford (also no website, but a great family from Oregon), Daniel (www.caringbridge.com/mn/danielhammer)
Robyn (see the link at the bottom of the page & read her story to learn about pediatric cancer tx in other countries); my ChemoAngel Buddy Jacob (www.caringbridge.com/mo/jacob); and the families of our special angels, John Russell (caringbridge.com/page/johnrussell), Gabbie (www.caringbridge.com/mn/gabrielles.prayers), Toireasa (caringbridge.com/page/toireasa), Annie (caringbridge.com/mi/anniekelly), Brendan, Matthew, and way too many others...

Thursday, January 16, 2003 at 03:52 PM (CST)

Finally time for an update! And so far, just good news to report! We made it back with our sanity intact -- our overseas connection in Paris was cancelled so we had to spend the night there. Sounds like fun, but it could just have well been Tulsa (althought I'm sure Tulsa is nice...) We finally made it home, but our luggage didn't. It sounds like today we will be getting our final stray piece -- my car seat! -- so that's good. Mama finally finished unpacking yesterday while I enjoyed a sunny, but cool afternoon playing on my playset with Gramma.

My Gramma arrived just 2 days after we got back. She said she wouldn't have even recognized me if mama wasn't with me -- I have so much hair, and I've gotten so big! We have been having fun doing all the things girls do best, like shopping, eating in restaurants, and taking naps.

I am feeling great, just a stray complaint every now and then, for instance, limping around the house and saying I broke my hip, telling mama "I'm sick, I have a fever, I need to go to the 'hopital'" but then when mama says, "Well if you're still sick tomorrow we'll go then," and then I have to say, "I'm shaking (and I just wiggle my whole body) See?? I have a fever!!" Obviously I really love the 'hopital.' Today I had blood work done, and because I no longer have my buddies (central line), I got my first IV. I was very brave, just a little nervous when I saw the needle, but otherwise perfect! And my counts are great: White cells 8.9 (normal 6 - 14), Red cells (hemoglobin) 12.9 (normal 10.5 - 14.2) and platelets a whopping 292,000 (normal 150k - 450k). I have all my scans in about a month.

With such good news, it's easy to think maybe I've escaped this nasty disease, but as another n-blast parent said, "It doesn't make the knot in your stomach go away, it just loosens it a little bit." Please continue to keep me and all our special friends in your thoughts especially, Matthew, Anna, Kaitlyn, Sabra, Daniel, Robyn, Crawford, my ChemoAngel Buddy Jacob, and the families of our special angels, John Russell, Gabbie, Toireasa, Annie, Brendan, Matthew, and way too many others...

Thursday, January 02, 2003 at 06:30 AM (CST)

Srecan Novi Godina!! That's Happy New Year in Serbian. Mama is having a hard time typing on this computer because it has different keys -- due to the different alphabet -- so please forgive our typos today. I had a wonderful new years with sparklers, fireworks, and best of all, a visit from Dede Mraz (literally translated, Grandpa Frost, but just like Santa Claus), So yes, I had 2 visits from Santa this year!! All is well, and Im feeling wonderful despite my new nightowl habits. Ive even had a couple of nights when i have been up til past midnight, and still going strong. Our trip has been lots of fun, and lots of activitz. The food is very similar meat & potatoes kind of stuff, but everzthing tastes so much better! Fresher. For example, baba has eggs straight from the farm , special cheese called kajmak straight from the cheesemaker -- mama can't get enough of that cheese, like a yummy cross between butter and cream cheese -- and oh, the tortes!! We have gotten several recipes so we can try them at home. The only things mama doesn't like are the roasted pig (considered a real delicacy here) that still has the skin and all... and something called piktija (also a really special dish) that is best described as a meat jello. Anyway, the time here has flown, and on Jan. 7 we are going home. I have 3 month scans due at the end of Jan, and we will send blood to NY for HAMA testing again when we get back. Now that I don't have my buddies anymore, I will have to get "stuck" everytime I need blood drawn, etc, but we have been practicing and I am a very brave girl so I am sure everything will be fine.

And as always please continue sending your love and energy to Anna, Kaitlzn, Sabra, Matthew, Daniel, Robyn, our ChemoAngel buddy Jacob, and the families of all our little angels, John Russell, Gabbie, Toireasa, Annie, Brendan, Matthew, and so many others...

Thursday, January 02, 2003 at 06:29 AM (CST)

Srecan Novi Godina!! That's Happy New Year in Serbian. Mama is having a hard time typing on this computer because it has different keys -- due to the different alphabet -- so please forgive our typos today. I had a wonderful
All is well, and
Anyway, the time here has flown, and on Jan. 7 we are going home. I have 3 month scans due at the end of Jan, and we will send blood to NY for HAMA testing again when we get back.
And as always please continue sending your love and energy to Anna, Kaitlzn, Sabra, Matthew, Daniel, Robyn, our ChemoAngel buddy Jacob, and the families of all our little angels, John Russell, Gabbie, Toireasa, Annie, Brendan, Matthew, and so many others...

Thursday, January 02, 2003 at 06:13 AM (CST)

Srecan Novi Godina!! That's Happy New Year in Serbian. Mama is having a hard time typing on this computer because it has different keys -- due to the different alphabet -- so please forgive our typos today. I had a wonderful
All is well, and
Anyway, the time here has flown, and on Jan. 7 we are going home. I have 3 month scans due at the end of Jan, and we will send blood to NY for HAMA testing again when we get back.
And as always please continue sending your love and energy to Anna, Kaitlzn, Sabra, Matthew, Daniel, Robyn, our ChemoAngel buddy Jacob, and the families of all our little angels, John Russell, Gabbie, Toireasa, Annie, Brendan, Matthew, and so many others...

Sunday, December 15, 2002 at 12:09 PM (CST)

Zdravo from Belgrade, Yugoslavia! We just have a minute to update, and can't possibly tell you all the fun we're having! We have met lots of daddy's friends and relatives. We had a great time at the wedding -- I danced all night and asked when we could go back to the "party" the next day!! Mama especially liked their tradition of almost everyone bringing a special cake (in addition to the big wedding cake). We tried almost all of them (well, maybe not all....there were probably more than 50!)

We spent my birthday on a little mountain vacation with the wedding couple in Zlatibor. We saw some really beautiful things, and ate some great food. I got to explore a bit in the mountains, and enjoyed exploring some old trains. But probably my favorite thing was visiting someone's relatives in the TRUE great outdoors. I got to play with his puppy, Mici, and -- possibly the best thing to me -- I had to go to the bathroom outside because he didn't have running water or a potty. I thought that was really impressive!!!

Tomorrow we are having a special belated b-day party with lots of friends and relatives. So hopefully we can update more later!

Thanks for all your continued energy and support to me and all my special friends!

Monday, December 02, 2002 at 08:03 AM (CST)

Wow! December already! Last year at this time I was being admitted for my second transplant. What a wonderful year we've had, and it's gone so quickly! Looking back over the past year, one of our biggest memories is our trips to NYC for my antibodies. We have met so many wonderful families, and sadly, have lost too many members of our n-blast family. Mama just read that the average neuroblastoma patient lives just 248 days after diagnosis. We're not sure where this statistic is from, but it gives you an idea of just what we're dealing with here. And also gives an idea of just how much SPIRIT I have!

That reminds mama of another story: mama was at a local Mom's group here in JAX, of mothers with kids with all kinds of cancer diagnoses. Many of the mothers she had never met. One mom was talking about a n-blast mom (not realizing that MY mama was also an n-blast mom), and mama asked, "Oh how is her daugther doing?" This mother, a brain tumor mom (who MY mama was feeling sorry for, always having thought, "well...thank god, it's not a brain tumor!") anyhoo -- this mother said, "Well, she's still fighting. You know how BAD that neuroblastoma is!!" And here mama was thinking how BAD brain tumors were!!

So what a year! We had a GREAT party on Saturday! We had a scavenger hunt for toys, which was a big hit! We have just found a few little things around the house that weren't recovered (you know how that goes!) We also made s'mores and played outside. Then we had a BUG cake! All us kids loved it! And we have so many great things to take to the hospital! We might deliver them today if we get around to it.

Tomorrow is a big day in my life....I'm getting my buddies taken out! The doctors suspect maybe my gram negative infections are a result of bacteria "colonizing" my line. Having my buddies out will also reduce the risk of blood infections when we're gone to Yugoslavia (not to mention, free up a whole bunch of luggage space!!!) It will be a surgical procedure, so I'll be getting some "sleepy milk" from one of my favorite doctors -- hopefully Dr. Collins, although I like all the anesthesiologists -- and I'll even get to bring my buddies home! If I feel okay, and if it works out time wise, there is a Christmas party hosted by Dreams Come True, the organization that gave me my playset. A pizza party followed by a shopping spree at a local dept. store. We're not sure if I'll be up to it, but I always like a little shopping!

Well, we've got lots of last minute things to wrap up before we leave on Thursday. I am busy playing with a new book mama got specially for the plane ride (18 hours, we needed a few novel activities!). But I have worn her down over the past week, and finally this morning convinced her to let me play with this book called "Christmastime is Cookie Time" It's got little kind of like puzzle spots on each page where you place a different shaped Christmas cookie on a baking sheet. This book has been a hit! I've been playing with it for over an hour! Making Christmas cookies and cocoa for Santa, the elves, mama, and me. Caillou is almost on, my most favorite show, so I'll probably take a break to watch that on PBS.

Thank you all so much for all your positive energy, thoughts, and of course, all the donations that made our party such a success! And as always, your energy keeps us all strong: Kaitlyn, Daniel, Matthew, Sabra, Sierra, and the families of all our little angels: Brendan, Corey, John Russell, Gabbie, Toireasa, Annie, Matthew, and too many others....

Friday, November 29, 2002 at 07:37 AM (CST)

We are finally home from the hospital. My last entry I told you about having a fever on Sunday night. Well, I felt fine the next day, but on Monday afternoon, we got a call from the clinic that my blood culture was growing a "gram negative" bacteria. That is a nasty family of bacteria that can cause sepsis or septic shock. So their policy is to hospitalize when kids have that kind of bacteria.

However, everyone agreed that I sure didn't look like I had gram negative bacteria! I felt fine, and played and just enjoyed seeing all my friends there. I met a new friend, an artist who started a program called "Art with a Heart" (therapeutic art for kids). She usually only visits kids 4 and over, but my friend, Ms. Susan told her to come visit me. I'm so glad she did, because I had a ball!! We did pastel chalk. It was very messy, but lots of fun! She asked if she could take one of my creations to frame for the exhibition in the lobby, but I said "NO" -- I wanted them all to myself!

We also met a new friend named Matthew. He was in the room next to ours. He is newly diagnosed with neuroblastoma. Mama and Daddy remember that first hospital stay very well. There are no words to describe it, except maybe "surreal." We let them know about CaringBridge, so if Matthew gets a website, we'll pass along the address so you can send them your support. It helps to not feel alone.

Please also send some extra support to our ChemoAngel buddy, Jacob from Missouri. He isn't feeling great. He's in the ICU with some kind of respiratory infection. His page is www.caringbridge.com/mo/jacob.

And thank you to everyone who has sent donations for my toy drive! We have SO MUCH cool stuff! We're going out today to have a shopping spree with the monetary donations. Ms. Susan said the hospital could use one of those Little Tykes basketball hoops, and I don't know what else we'll choose. We have about 4 big boxes of stuff to deliver next week. It's been a lot of fun to look at all the stuff as it comes in. We're a little behind on party planning. So today I get to choose some party hats and whistles and fun stuff like that. We are having a camping theme with a scavenger hunt, so that is pretty much taken care of.

My godfather, Uros, is here visiting for the weekend. Daddy has to work today, but Mama, Uros and I are going to go out and brave the shopping scene. Right now I am anxious to make "pigs in a blanket" for breakfast -- one of my favorites!

And as usual, your positive energy keeps us all strong: Kaitlyn, Daniel, Sierra, Matthew, Anna, Jacob, and the families of all our little angels, John Russell, Corey, Brendan, Hunter, Matthew, Toireasa, Gabbie, Annie, and too many others...

Monday, November 25, 2002 at 08:38 AM (CST)

Well, like Vicky said in the GuestBook, we don't seem to journal very often when things are going well. No news is good news, you know. But last night I got a fever, so mama decided to update. I was playing along, had a great day, spent lots of time outside on my playset, and we were back inside after bath and I was happily playing with a Pooh Talking Activity Book (it was actually a gift for the toy drive, but it was just too cool, I had to have it...But Helen, mama promises to buy a replacement for the hospital! :-) ) Anyhoo, mama left me for, literally, like, one minute, and I started yelling for her. I do this sometimes -- you know how little kids can only seem to say "mama" even when daddy's are around -- so mama didn't answer. But then I got more insistent and sort of used my "I'm hurt" voice. And I went running in to mama and said, "I'm cold!"

Well, sure enough, I had the shaking chills. No fever yet, but we learned last time, that shaking chills are nothing to mess with. So mama paged the doctor right away, and we took off for the ER to get some IV antibiotics. On the way to the hospital, my chills went away, but by the time we got to the ER, I did have a low fever (101). And yes, I'm the biggest girl...I took my temp in my mouth! Usually they do it under my arm -- and I tell them: "No bottom!" Can't take rectal temps with us cancer kids.

It turned out fine. They gave us antibiotics and sent us home. We went there and came home within 2 hours. Pretty good time. I do have a snotty nose, so we're hoping it's a fever from a cold virus. One funny story: on the way to the ER, mama and daddy were talking amongst themselves about the possibility of having the docs take out my line before we go to Yugoslavia. (Now that my counts are good, and I'm not considered immuno-suppressed anymore, the concern with fever is that I would have bacteria in my central line. The problem with that is it's a direct line into my blood stream, so any bacteria goes systemic quickly. You can get septic from that.) Well, when we got to the hospital, the nurse was doing my vitals -- and I know what happens by heart -- and I seemed worried. I put my head in mama's armpit and said, "I don't want this nurse to take out my buddies." Mama thought I meant I didn't want this nurse to take my buddies out of my special tee shirt (it has a pocket that holds my lines). But I kept acting worried. And mama realized I overheard mama and daddy talking about getting my line removed and I was worried that the nurse was going to take my buddies out RIGHT THEN!

Well, we're still looking forward to my anniversary / early b-day party this weekend. We're getting lots of cool stuff for the toy drive. THANK YOU!!

And as always your thoughts and energy keeps us all strong...

Monday, November 18, 2002 at 06:44 AM (CST)

We've finally set a date for my transplant anniversary / early 3rd birthday party. We're having "An Afternoon of S'mores and More!" at Camp Rak on Nov., 30. We're going to put up my tent, play outside, make s'mores in the fireplace...it's going to be lots of fun! We've already gotten some great things in the mail!! So thank you to all who have donated to the toy drive! We've spoken with the Child Life Dept., and they said they are also happy (really happy, I'm sure!) to accept checks made out to: Wolfson Children's Hospital.

We've been having lots of fun around here. I got my park! And it sure keeps me busy! I love playing on it. I can play for hours. I am trying to teach Emma to climb the ladder to the top of the fort, but so far, no luck. She really wants up there with me though.

We are getting ready for our trip to Yugoslavia. We leave Dec. 5 and return Jan. 8. We're not sure how we'll pack all the stuff we need to take, but as everyone who travels knows, no matter how much you take (a lot of which are presents and medical supplies we'll use up or give away and won't have to bring back) -- you always end up coming home with more than you left with! So I'll have to help mama with some creative packing.

We are going to put up some new pictures today, be sure to check them out!

Friday, November 08, 2002 at 06:42 AM (CST)

We got our bone marrow results back and all is clear! We are so grateful! When this whole adventure began, it was hard to imagine getting to this point. We went to my regular pediatrician this week for the first time since my diagnosis. (I had to get a flu shot, which was soooo not a big deal, after all the shots I've had. The nurse wanted mama to hold my hands, and we were, like, why?? I didn't even make a peep or change my conversation). Anyway the doctor (Dr. Sanchez) was so glad to see me and hear about my test results, he just couldn't stop smiling and shaking his head! We'll give you some background...

At my 15 month well-baby checkup I saw Dr. Sanchez. Mama and daddy were a little concerned about a bruise I was developing on my right eye, sort of like how an old black eye looks (sort of yellowish). They told about how I had fallen off a chair about a week before, and then the next week this bruise was there. They all thought it was a bruise from falling off the chair. Other than that, I was given a clean bill of health. Fast forward 2 weeks. I got sick in the morning. Mama stayed home from work, and after throwing up in the morning, we had a great day! We played and I acted just fine. The next day I threw up too, but acted fine during the day. I didn't throw up the next day, but did the following morning. We all just thought I had a touch of the flu that was just hanging around. But when it continued off and on that next week, we went into the doctor. When the doctor, (Dr. Sapolsky) walked into the room, she said, "What's the matter with her face??" Mama and daddy explained that I had fallen off a chair and had a black eye, but the real reason we were there was because I'd had the flu for about a week. Dr. Sapolsky said, "No. The whole right side of her face is distorted. I thought that's why you were here." It was hard for them to see, but then the doctor had them feel my face and what they felt was the big tumors by my eye and on my right lower jaw (because they were in the bone, it just felt like bone). Dr. Sapolsky did a fairly good job of acting like it was probably no big deal, but we should get it checked out the following Monday. (Because it was Easter weekend, she didn't want us to have to be in the hospital all weekend). By the following Monday, my eye was much worse and blacker. Two days later, my right eye started to be cross-eyed because the tumor was pressing on it so much. The doctors from the pediatricians' office visited us each day that first week we were in the hospital, and that's the last time they'd seen me. (Whew! Long story, but we needed to give some background!)

Anyhoo, back to my flu shot this week...Dr. Sanchez just kept smiling and shaking his head. He finally said, "Wow. It's so good to see her. Because this tumor...Well...it's..." and then he stopped. Then he shook his head and said, "Well, you probably know this anyway. It's a really bad tumor." Huh. You're telling me, doc. So anyway, I guess we're not the only ones who are so grateful for how well I've done and continue to do. All your healing thoughts and energy definitely helps too!

Not much new. My "park" is being delivered today! I'm having a hard time waiting. "Is it coming now??" and "I'm ready for my park now!!" all morning.

We will have news soon about when my special one-year/birthday celebration will be. We think it's going to be a camping / scavenger hunt theme. And we will search for the items on the hospital wish list. (We are having a toy drive for the hospital/clinic - donations of new items can be sent to us at home: Lina Rak, 10358 Clayton Mill Rd., Jacksonville, FL 32221.)

WOLFSON CHILDREN'S HOSPITAL/NEMOURS CLINIC WISH LIST
(**starred items are greatly needed**)
These items will be used by the Child Life Dept. during activities, kept in the playrooms, and/or given to patients as gifts as needed.

* Coloring Books--
* Crayons
* Markers
* Uno Cards
* Playing cards
* Barbies
* Bubbles
Movies- (Current G or PG)
Activity Kits
Playdough
Wooden Puzzles
Beads
Balls
Magna Doodles
Musical Books
Board Games (Connect Four, Candyland, Chutes & Ladders, Jenga, Guess Who, Trouble, Checkers etc.) Lina's favorites are: Cootie and Hi Ho Cherry-o
Washable Tempra Paints
Acrylic Paints
Pop up toys
Trucks/Cars
Baby Gym
Riding Toys
Doll House People and Accessories (Lina thinks the hospital playroom really needs these!)
Fisher Price / Little Tikes Toys
Hand Held Electronic Games
Polaroid Film (600 speed)
Blank Cassette Tapes
Disposable Cameras

And as always, your positive energy keeps us all strong: our ChemoAngel buddy Jacob, Crawford, Anna, Kaitlyn, Sabra, Daniel, as well as the families of our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and too many others...

Saturday, November 02, 2002 at 08:09 AM (CST)

My bone marrow procedure was Thursday, and preliminary results look clean! Thanks for all that healing energy! Trick or treat night was Thursday night, and I was pretty tired. I was sleeping when Brittany and Brandon (our neighbors) came over to get me. Brittany tried to wake me up for several minutes, but I was out! When I finally woke up, we took some nice pictures and went. I wanted to bounce-a, bounce-a, bounce-a everywhere (because that's what Tiggers do...) and I think it tired me out too much. I really enjoyed trick-or-treating though.

I got a wonderful surprise Wednesday...a beautiful princess costume from Charlie, my angel friend John Russell's brother. I had told him I was going to be Tigger, but then after mama got the costume, I decided I wanted to be a princess like Brittany. Well, just in time for Halloween, Charlie, my fairy god-brother, sent me that costume. It was such a wonderful surprise! But Trick or Treat night turned out to be a little too chilly for that dress, so I went ahead as Tigger. Rest assured I will spend lots of time as Princess Lina, queen of the castle, though!

We are looking into going to Yugoslavia for the Christmas holidays. Daddy's best friend is getting married, and Daddy is going to be the Kum (pronounced koom - literally translated as "godfather" but sort of like the best man - he will be the godfather of their children though, too, as is the custom). I am brushing up on my Serbian. It seems I knew a lot more as a baby, but it's amazing how quickly it comes back.

If we do end up going, I will be gone during my birthday. But we are going to have a special celebration before we go. Part of our celebration will be the one year anniversary of my second stem cell transplant (12/11/01). So to show our gratitude, we are having a "toy drive" for the hospital/clinic, for my friends Miss Susan and Miss Jolie (the Child Life Specialists who have made things so fun for me and the other kids...). We would sure appreciate donations. We've included a list below of their most-wanted items. These donations are in celebration of my good health, and are the most special birthday gifts I could receive. Please consider your donation to the hospital/clinic as your birthday gift. Donations can be sent to our home address: Lina Rak, 10358 Clayton Mill Rd., Jacksonville, FL 32221. You can attach a note to your donation that it is in honor of me if you'd like. THANK YOU!

Please send your positive wishes and healing energy to Collin, a little boy battling ALL leukemia from mama's hometown (Earlham, Iowa). You can visit him at: www.caringbridge.org/ia/collin

WOLFSON CHILDREN'S HOSPITAL/NEMOURS CLINIC WISH LIST
(**starred items are greatly needed**)
These items will be used by the Child Life Dept. during activities, kept in the playrooms, and/or given to patients as gifts as needed.

* Coloring Books--
* Crayons
* Markers
* Uno Cards
* Playing cards
* Barbies
* Bubbles
Movies- (Current G or PG)
Activity Kits
Playdough
Wooden Puzzles
Beads
Balls
Magna Doodles
Musical Books
Board Games (Connect Four, Candyland, Chutes & Ladders, Jenga, Guess Who, Trouble, Checkers etc.) Lina's favorites are: Cootie and Hi Ho Cherry-o
Washable Tempra Paints
Acrylic Paints
Pop up toys
Trucks/Cars
Baby Gym
Riding Toys
Doll House People and Accessories (Lina thinks the hospital playroom really needs these!)
Fisher Price / Little Tikes Toys
Hand Held Electronic Games
Polaroid Film (600 speed)
Blank Cassette Tapes
Disposable Cameras

And as always, your positive energy keeps us all strong: our ChemoAngel buddy Jacob, Crawford, Anna, Kaitlyn, Sabra, Daniel, as well as the families of our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and too many others...

Monday, October 28, 2002 at 07:12 AM (CST)

V vz z z z zz ,m ,m, , , , , m,m,m ,,,,,,,,,m , ,, , , X

(That's a little message from Lina...she likes to sneak onto the computer whenever I get up to get more coffee.)

And mama needs extra coffee this morning because we had to make an unexpected visit to the ER last night. When mama and daddy went to bed I was running a fever of 101.8 under the arm (it's one degree cooler than an oral temp). I've had a very snotty nose all week, and have developed a worsening cough over the last couple of days. That and the fact that I still have my buddies (central line) meant off to the ER for counts, a chest x-ray and a dose of antibiotics. Luckily it wasn't busy at all there, so we were in and out in just 2 and 1/2 hours.

They did blood cultures on my line, and we won't get results on that for 24-48 hours. But my counts look wonderful!! I am finally normal in everything! My white cell count was 7 (normal = 6-14) and I haven't had a normal white cell count since this whole adventure began. My platelets were beautiful at 247,000 (normal = 140 - 400 thousand) and my hemoglobin is a nice 11.6 (normal = 1.5 - 16). My chest x-ray was negative for pneumonia. If the blood cultures come back negative, I won't even have to do any antibiotics....it just means I have a normal case of a yucky cold. We have to go into the clinic today for a doctor visit to figure out what we'll do.

In other news, we met with the Dreams Come True people, and my "park" is being delivered on Nov. 8! I'm so excited! We'll take lots of pictures to show how much fun I'm having. Thanks to Dreams Come True and the PlayNation people for working together to give me such a great dream.

Please continue to send your positive thoughts and energy to our ChemoAngel buddy Jacob, Crawford, Sabra, Daniel, Anna, Kaitlyn, as well as the families of all our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and so many others...

Tuesday, October 22, 2002 at 06:53 PM (CDT)

Two tests down, two more to go...

I've had a bone scan and CT scan already this week. Tomorrow I have an MiBG scan (the special radioactive scan that lights up n-blast cells). We haven't heard any reports on scans yet, although to mama's "highly trained" eye, there didn't seem to be anything scary that jumped out. But then, like daddy always says, "And where did you get your medical degree??"

The biggest news this week is that I did my first scan without sedation! Usually because of my age, they give me some medicine (which I call "sleepy juice") to make me go to sleep. It tastes awful and it makes me pretty unstable for the rest of the day. But today, they had some unexpected extra time and mama convinced them to try it without sleepy juice. I did great! I was such a big girl and I didn't move a muscle. Except when mama told me not to talk, I thought I could mouth the words, I didn't understand that I wasn't supposed to move.

Next Thursday I have a bone marrow procedure, so please send that positive energy for good results all around.

Please visit our ChemoAngel buddy Jacob and fill up his newly created guestbook with positive thoughts! He is having a bone marrow procedure on Monday, and really needs that positive energy for it to come back clean. Visit www.caringbridge.com/mo/jacob.

Please continue to send your positive thoughts and energy to our ChemoAngel buddy Jacob, Crawford, Sabra, Daniel, Anna, Kaitlyn, as well as the families of all our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and so many others...

Thursday, October 17, 2002 at 02:37 PM (CDT)

We had a little party yesterday to celebrate my one year since transplant. Some new friends from the neighborhood came. We are all close in age. We did all the things 3 and almost 3 year olds do, like get every toy out and make a real mess! But we had a blast, and our mamas got along real well too. They have bravely decided to try to get us together once a week or so.

Please visit our ChemoAngel buddy Jacob and fill up his newly created guestbook with positive thoughts! He is having a bone marrow procedure on Monday, and really needs that positive energy for it to come back clean. Visit www.caringbridge.com/mo/jacob.

Please continue to send your positive thoughts and energy to our ChemoAngel buddy Jacob, Crawford, Sabra, Daniel, Anna, Kaitlyn, as well as the families of all our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and so many others...

Monday, October 14, 2002 at 07:12 AM (CDT)

This week (actually Friday) marks the 1 year anniversary of my first stem cell transplant! What a year, and every day we learn to be a little more grateful...there are actually sooo many complications and things that could have gone wrong, but didn't! We announced my anniversary at Church yesterday (at the end, our priest asks for b-days, anniversaries, guests, etc. and shakes everyone's hand or kisses them!) Anyway, we announced my anniversary and everyone clapped and clapped. It was a little overwhelming, I had to bury my head in mama's armpit! Thank God for deorderant! This week we are going to have a little party with some neighborhood kids to celebrate my anniversary, too.

Since our last update, we've also taken a little mini-vacation. We went to Greenville, SC, to visit my godfather. I got to feed a tame squirrel that lives in his neighborhood, play in the pool, and we went to Asheville, NC (just a few hours away) to visit the Biltmore Estate. What a house! Our house would fit in the central atrium! They have a winery there too, and I got to play "dinosaur" with some kids while mama, daddy, and my godfather sampled all the wines.

I have re-evals next week. Something almost everyday: bone scan, MiBG, CT, bone marrow aspiration... But everyone agrees, I look like a million bucks. So we want to see if I look this good on the inside.

The 2003 "When I Grow Up" calendar, benefitting the Jay Fund (a local pediatric cancer fund assoc. with the Jax Jaguars) is out. I "modelled" for this calendar as a painter. It turned out great! We'll try to get some pictures up soon.

I am in the process of getting a "dream" fulfilled by a local organization similar to Make-a-Wish, called "Dreams Come True." We decided I want a play structure for the backyard. I call it my very own "park." Mama told me about it, and said I get a dream fulfilled, so I closed my eyes, and said, "I'm dreaming...I'm dreaming...I'm dreaming I get a park..." but I guess I have to wait until closer to my birthday in December. But this weekend we went to a local "park" place, and I went nuts. We no sooner pulled into the parking lot, then I was wriggling out of my car seat restraints, yelling, "A park!! A park!!" We picked out a cool structure that has a play house on the bottom, swings, and a trapeze on the side, a slide on the other side, and another playhouse on top! I might have to move my headquarters out there. Now the challenge is being sure our backyard is big enough....

Please continue to send your positive thoughts and energy to our ChemoAngel buddy Jacob, Crawford, Sabra, Daniel, Anna, Kaitlyn, as well as the families of all our little angels, Brendan, Corey, John Russell, Matthew, Annie, Gabbie, Toireasa, and so many others...

Wednesday, October 09, 2002 at 05:01 PM (CDT)

Just a quick journal entry to let you all know everything is just fine here in Jacksonville. We haven't been on-line lately because our computer died (Daddy says we got a virus, and he's pretty sure it came from an on-line neuroblastoma group we subscribe to...yet another bad thing this disease does!!) After a few days of withdrawal, we all adjusted (well, mama had a hard time). Even I was saying, "I wanna play disney dot com!!" and I couldn't understand why I couldn't when the computer was still sitting there same as ever.

I have scans and re-evals next week. So could sure use all your special energy and thoughts. We also ask that you keep our Chemo Angel buddy in your thoughts. His name is Jacob, he's 6, battling relapsed leukemia.

As always, your energy and thoughts keep all of us strong: Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, Brendan, Corey, John Russell, Matthew, Toireasa, Gabbie, Annie and so many others...

Wednesday, September 25, 2002 at 07:34 PM (CDT)

I am home from the hospital and feeling much better. The first doses of antiboitics I got last week knocked out that bad bacteria and now I'm just doing my medicine ball at home. I wear it around in a special fanny pack and play while I get my meds!

I rather enjoyed my hospital stay, and got to see all my old friends: Miss Susan, Johnna, and all my special nurses. We were told a couple of them even called in before their shifts requesting me to be their patient...probably partly because I'm such a cooperative patient, and partly because mama and daddy like to do most of the stuff by themselves.

During my hospital stay I had my hearing tested again. It's been almost 10 months since my last chemo, and although I didn't have any hearing loss last year, sometimes there are late effects from the chemo. I got to do the "big kid" hearing test this time, not the one for babies! I wore the special headphones and got to put a checker in a Connect Four game whenever I heard a beep. Mama got worried I had lost some hearing because after 2 whole rows of checkers, I stopped putting in checkers and even mama could hear the beeps. Well, it seems that I decided my own way to play this game....the audiologist stopped and reminded me of what I was supposed to do, but I told her, "No, I need to put some here, and some here and then fill it all up!!" She half laughed and half seriously told me, "I think I'm the one who's supposed to give the directions here." She didn't realize I dance to my OWN drummer. Glad to say, once we got our rules of the game figured out, my hearing turned out just fine. So it seems I am just practicing "selective listening" when I say, "What? What?" when I'm asked to do something.

We send blood work again tomorrow to NYC to test for HAMA results. There has been some evidence that repeatedly getting, and then losing, a HAMA (antibody to the treatment, sort of like what your body produces when you got a shot) is associated with a more positive prognosis. That was good news to hear.

Other good news is, I've been practicing pedaling my bikes! So I got to take my big bike with training wheels out on the sidewalks today! It's much easier for me to pedal going down the driveway (it's a slope...), but I think I'm getting the hang of it. Now I don't have to say, "I'm getting so frustrated!" Mama wants to get me signed up for dancing to help my motor skills even more, but for most places you have to be 3, so I'll have to wait until December.

As always, your energy and thoughts keep all of us strong: Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, John Russell, Matthew, Toireasa, Gabbie, Annie and so many others...

Saturday, September 21, 2002 at 09:05 AM (CDT)

Our special friend, John Russell, got his angel wings yesterday. Please send his family your energy and support. www.caringbridge.com/page/johnrussell

**Please keep that strong energy coming for John Russell and his family.**

Mama was just typing a loooong journal entry, but it all got deleted, and she doesn't have the patience to retype it, so we'll give that update later.

I happen to be in the hospital with a bacterial infection. I seem more like myself yesterday and today, but they'll probably keep me until Sunday for meds and observation. Just a reminder of how fragile life is!!

We'll update more when we're all home. Mama is still is her p.j.'s at 10 a.m. and really should start getting herself together to head back to the hospital.

And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, Matthew, Toireasa, Gabbie, Annie and so many others...

Saturday, September 21, 2002 at 09:00 AM (CDT)

**Please keep that strong energy coming for John Russell and his family.**

Mama was just typing a loooong journal entry, but it all got deleted, and she doesn't have the patience to retype it, so we'll give that update later.

I happen to be in the hospital with a bacterial infection. I seem more like myself yesterday and today, but they'll probably keep me until Sunday for meds and observation. Just a reminder of how fragile life is!!

We'll update more when we're all home. Mama is still is her p.j.'s at 10 a.m. and really should start getting herself together to head back to the hospital.

And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, Matthew, Toireasa, Gabbie, Annie and so many others...

Tuesday, September 17, 2002 at 07:05 AM (CDT)

Today we need special energy to go to our friend John Russell. He just had a special treatment called MiBG therapy -- a radioactive treatment that goes right to the cancer to get it, but also lowers blood counts pretty badly. This is an experimental treatment so we need lots of energy imagining John Russell healthy and cancer free, with sky high blood counts and lots of energy!!

We are so tired of this cancer. "Stupid cancer" I call it (mama and daddy don't really like to hear me call something "stupid" but they have to agree with me!) Please keep us all in your thoughts and prayers. September is National Childhood Cancer month -- look for people wearing gold ribbons, the official childhood cancer support sign -- so please remember some of our favorite charities in memory of all who have fought, and are fighting for their lives. Look in the old entries for names and addresses of some of our favorite organizations.

And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, Matthew, Toireasa, Gabbie, Annie and so many others...

Wednesday, September 11, 2002 at 08:22 AM (CDT)

Today our thoughts are with the victims of Sept. 11 and those who loved them. Today is also a reminder to be grateful for all we have, and share our love with the important people in our lives.

And here's some wisdom from our most special girl for those of you who are struggling to make sense of today: we were in bed watching a St. Jude's special "infomercial" the other night (Lina loves to watch anything about hospitals, especially things that show children or babies). One of the stories was about a 3 year old, very touching, and after his segment, they said he had died. I cried a little bit, and Lina laid on top of me, got real close to my face, and said, "Whatsamatter, Mama?" I said a little boy had died of cancer and it made me sad. She kissed me, then said excitedly, "I know!! Let's pray!!" Sadness and death come to us all. We can take a lesson from the way little ones embrace life in the midst of tragedy.

We've added a link at the bottom of the page to my friend Robyn's website. She is from England, so has no insurance to cover treatments. So they have a trust fund set up to help support their stay here. Any small donation would help them out a lot! Her website is: www.robynbrooks.co.uk.

And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Kaitlyn, Crawford, and the families of our little angels, Matthew, Toireasa, Gabbie, Annie and so many others...

Tuesday, September 03, 2002 at 08:58 PM (CDT)

Sorry for the lack of updates lately. I've been busy playing and tearing up the house. But that also means nothing medically interesting is going on, so that's good! We had a nice long weekend with Daddy off from work for 2 extra days. Somehow, things always get extra messy around the house when Daddy's home all day. Today we started the day off by building a large house with all the furniture cushions while Mama was sleeping in. We covered this with a sheet, and I spent a lot of happy time playing in there. When we ran out of stuff to mess up, we all went to MOSH (the Museum of Science and History) where I got to see the large, mechanical dinosaur exhibit one last time before it leaves. It's so amazing! I'm just on the verge of being scared, but it's too interesting not to look at. They also have a really neat play place there that I got to explore. When we got home, I had a cool box waiting for me from my Iowa relatives, Tracey and Eric. It is this awesome blanket that looks like a jungle. Well, I had to spread that out on the floor and then drag out every toy that wasn't already occupied so I could have a "picnic." All in all, a great day!

We also went out to eat at a Japanese steakhouse this weekend. That's a real special treat for me, since we don't go to restaurants often. I was such a big girl, too! I loved watching the guy cut up and cook all the food. Then at the end, he tried to throw some food in my mouth! I opened up as wide as I could, but he missed twice!! First it hit the floor, then it hit my nose, and finally he got a piece of shrimp in my mouth! (And yes, I ate pretty good!)

It was a weekend for seafood because Saturday night we went to Kirk, Ju-Ju and Baby Jack's house for a crab boil. That's where you put a bunch of stuff and crab legs in a big pot and then you get really messy and eat for a long time. I ate some crab, but really just preferred trying to crack it open. Sometimes I'm not real nice to Baby Jack (I think I don't like sharing the spotlight...). Like Saturday, we watched Snow White, and I got to snuggle up on the floor with a bunch of pillows. Jack wanted to get beside me, but I told him, "No, Baby Jack. There's not enough room!" Somehow after Jack had to go to bed, I managed to scoot over enough to let Kirk lay by me -- and he's 6'11" tall!

We send bloodwork to NYC for HAMA testing this week. If it's (-), we'll head back for 2 weeks of treatment on Sept 16. If it's (+) we'll just hang out at home some more.

We've added a link at the bottom of the page to my friend Robyn's website. She is from England, so has no insurance to cover treatments. So they have a trust fund set up to help support their stay here. Any small donation would help them out a lot! Her website is: www.robynbrooks.co.uk. And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Matthew, Kaitlyn, Crawford, and the families of our little angels, Toireasa, Gabbie, Annie and so many others...

Tuesday, August 27, 2002 at 07:38 PM (CDT)

We made it home safe and sound. We had to sit on the runway in the plane for 2 hours waiting for takeoff (slowed down because of weather), but I sure didn't care. The second we sat down, I fell fast asleep, and slept all the way home.

This cycle of treatment was painful, but I seem to deal with the narcotics and everything better. No more sleeping from one day on into the next!! Because I'm the "biggest girl" - as I like to say - and have a longer attention span now, it was also easier on my chaperones, who didn't have to push around my IV pole to a new activity every two minutes. My favorite activity was one day when mama got a puke bucket, and filled it with sand, and put shells in it. Then I took a tiny paintbrush and pretended I was looking for dinosaur bones. I didn't move from that sandbox for over an hour and a half.

I had lots of fun with Gramma too. I only told her to "move please" on a couple of days. I used to tell Grampa to "MOVE PLEASE!" every day! One day I just sat up on the bed, and Gramma had her back to me, and I sat quietly until she kind of turned to see what I was doing. Then I tapped her gently on the shoulder, and whispered, "Go away." But all in all, we had a great time. We saw some sights, went to a fun place and painted our own pottery, but didn't make it to Macy's....maybe next time, Gramma. I miss playing with you; I'm always saying, "Gramma" when I should say "Daddy" now.

We have no medical stuff for 2 weeks now! We will send blood back to NYC to check for HAMA again (the antibody to the treatment). And I have a regular (well, almost regular, just a routine oncology visit) in 3 weeks. But I'm sure we'll manage.

We've added a link at the bottom of the page to my friend Robyn's website. Like I said, she is from England, so has no insurance to cover treatments. So they have a trust fund set up to help support their stay here. Any small donation would help them out a lot! Her website is: www.robynbrooks.co.uk. And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Matthew, Kaitlyn, Crawford, and the families of our little angels, Toireasa, Gabbie, Annie and so many others...

Tuesday, August 20, 2002 at 03:10 PM (CDT)

One week down, and only half a week to go! My treatments are still a little painful (but managed with morphine) and I've been having lots of hives. Yes, it sounds bad, but it's actually a good sign that I don't have a HAMA and the antibodies are doing their job!

We had a great weekend being tourists here in the Big Apple. Saturday Gramma and I let mama sleep in, and we went to a fun park to play. Then after my nap, we went to the Guggenheim museum (modern art). There were some VERY interesting pictures there! :) After that, we walked a bit and went out for Mexican. It was a big day!! Sunday was wonderful...we went to Times Square to the huge Toys R Us! It's a children's paradise!! I got to ride the ferris wheel, I saw a giant T-Rex that roared and moved and was only "a little bit scary." I also saw a giant E.T. We walked back to the RMH (some 40 blocks!) and visited St. Patrick's cathedral and Central Park on the way home. A very exciting weekend.

I'm still busy making new friends. Last night the RMH had another BBQ and a clown to entertain us. I met a new friend, Robyn who also has nb, and her sister Elyse. They're from England. We were having so much fun, I convinced Gramma to take us all down to the playroom. But I encountered my first lesson in "you aren't always treated fairly" when some little girls conspired to steal my play food in the playroom. Even though Gramma told them "NO" - they still took it away from me. I was crying so hard and so long, I could hardly catch my breath. I felt so bad about it, this morning when we saw one of the little girls involved in the conspiracy, I talked about it and got a little upset again!!

We've added a link at the bottom of the page to my friend Robyn's website. Like I said, she is from England, so has no insurance to cover treatments. So they have a trust fund set up to help support their stay here. I don't understand all the ins & outs of it, but suffice to say, it makes mama nervous to see the bills we get from Sloan-Kettering -- and our insurance pays 100%!! So any small donation would help them out a lot! Her website is: www.robynbrooks.co.uk

And as always, your energy and thoughts keep all of us strong: John Russell, Sierra, Daniel, Anna, Sabra, Matthew, Kaitlyn, and the families of our little angels, Toireasa, Gabbie, Annie and so many others...

Friday, August 16, 2002 at 09:03 AM (CDT)

It's been a long week. But the antibody treatment seems to be getting easier - perhaps a sign that I'm developing a HAMA again? However, I've been having a lot of nausea and headaches in the evening - probably from the narcotics. It's making me feel pretty yucky at night until about 9:00 when I pop up, a new woman, and play for awhile before going to bed.

I'm having fun at the clinic. I've made several neat crafts and playing all kinds of fun games. I won some Barbie clothes during Bingo the other day. I really like Barbies now, especially shoes, so that was very exciting. Yesterday I got a huge prize box from my friend Eva's gramma, and it had all kinds of Barbie clothes, a new Barbie, and too much other fun stuff to even tell you about! One of the things was a magic wand that I took downstairs during the RMH pizza dinner and made all the other kids jealous.

Just to give you a taste of life here at Sloan-Kettering, we've collected a few quotes (these tell you about the weird sense of humor cancer folks have as well!!): (1) a poster - created by a child - in the playroom that reads: "Dear all sick kids at Slone - I hope your time alive is great!" and (2)how about this unique tantrum tactic overheard from one of our fellow antibody
patients: "If you keep bossing me around, I'm gonna rip my port out!!" Both of these seemed to give my mama a little chuckle.

This weekend we plan to explore a little bit. I've spotted a park I'd like to play at, and gramma - being related to her mother after all - is busy planning where we will eat. Mama wants to go the Guggenheim museum, which might be nice since it's supposed to be hot. Enjoy your weekend.

As always we appreciate your continued support and positive energy for me and my friends John Russell, Daniel, Sabra, Matthew, Kaitlin, and Anna as well as thoughts for our angels Toireasa, Gabbie, Annie and too many others...

Tuesday, August 13, 2002 at 03:43 PM (CDT)

Hello from New York! Well, my HAMA definitely went away...I've been having some pain and itching with my antibody treatments. I'm also retaining a lot of fluids (another side effect), so much so that mama calls me her "Chinese girl" (because my eyes are squinty). But luckily, I've been tired when I finally get a bed at the clinic, so I fall asleep all through the treatment and only wake up for one episode of pain for about 5-10 minutes, then with my good old friend morphine, I'm out again.

We had a BBQ here at the Ronald McDonald House last night. They had a raffle and I won a little Lego set! I also would have won another prize, but mama gave my ticket to another boy after I won...then they promptly called that number! He was very excited. We decided maybe my luck is changing!!

I'm having fun at the clinic and making some new friends. Some of my old friends are at their own homes now, so I have to make new friends. But for those of you who know me, I'm not very shy, so that's not a problem.

For those of you who have asked, my address here is: Ronald McDonald House, ATTN: Lina Rak, 405 E. 73rd St., New York, NY 10021.

Please keep your energy and support coming, especially for my friends Anna, Daniel, Sabra, Sierra, Matthew, John Russell, and our angels Toireasa, Annie, Gabbie and so many others...

Friday, August 02, 2002 at 07:33 AM (CDT)

Happy Friday! I'm all done with my tests and scans, and all we've heard is good news! Thanks for all the special energy and prayers...I'm sure they helped. My CT shows no abnormalities and all my parts look like they're working the way they should.

The jury is still out on whether I like my new glasses or not. It's hard to get used to wearing them all the time. I do pretty good for awhile and then I just decide I've had enough. We'll try to get some pictures up today. I still have my blocked tear duct, but we'll figure out at our opthalmologist appt. in Sept what we're gonna do. For those of you who might be wondering, my need for glasses had nothing to do with cancer or treatment. My mama is blind as a bat so I must have gotten it from her. If I was a "normal" kid, we probably never would have known about needing glasses, but since I'm anything but "normal" (and never have been, by the way!) we found out early. They are helping me out though. When I first put them on, I spent alot of time staring at the floor -- the carpet was a muted, multi-colored pattern that I probably couldn't see until I put my glasses on. Then, when we went outside, I said, "Oh, the grass is growing!" Mama said she remembers putting glasses on for the first time and seeing each blade of grass and each leaf on the tree....it's very impressive. It helps you appreciate all those little things!

In my spare time, I've been busy playing. I went to a birthday party for my friend Sophia who turned 3. I won pin the nose on Bob the Tomato. I got a new miniature tea set to add to our collection. My good friend Brittany has come over a couple times this week. I'm not very nice to her little brother Brandon (16 mos) though. I say, "Brandon, you don't come!" When mama tells me that's not nice and asks me why I'm naughty to Brandon, I say, "Because I'm a Stinker!"

Thanks for your continued thoughts and healing energy. Please remember my friends John Russell, Daniel, Sierra, Sabra, and Matthew as well as the families of our little angels, Toireasa, Gabbie, Annie and so many others... We've added some sites below that are such great ways to support others through their cancer treatment. We know how much your support has meant to us!

Friday, July 26, 2002 at 09:09 AM (CDT)

** Check out www.yourportraitstudio.com for pictures of me and my cousins, Leah and Lindsey (Leah is the brunette, Lindsey is the blonde). You will need to use this password - 2742077 **

I just wanted to share that my MIBG scan was clean! Mama and daddy are very happy, but I'm like, "yeah? What'd you expect??"

MiBG is a special radioactive isotope that "lights up" neuroblastoma cells. There are also other spots in the body that take it up (called "uptake") like the bladder, the kidneys, the salivary glands, the heart and the liver. Since I had tumor activity in my liver initially, we are waiting to compare next week's CT with the MiBG and hoping that they still give us the all clear.

When it rains, it pours....we also found out that I'm FINALLY HAMA negative! Which means we get to return to NYC for the antibody treatment. It's not definite yet, but it will probably be the week of August 12, or possibly August 6. I don't think my Grampa will be able to go this time. Summer is his busiest painting season. He is probably disappointed that he won't be able to have any Indian food with mama. :) (One of them really likes it, the other doesn't, but I won't tell who!) My daddy might be able to go, and if not, maybe Gramma.

I'm getting my glasses today. We'll try to post some new pictures so you can see what they're like!

Friday, July 26, 2002 at 06:45 AM (CDT)

I just wanted to share that my MIBG scan was clean! Mama and daddy are very happy, but I'm like, "yeah? What'd you expect??"

MiBG is a special radioactive isotope that "lights up" neuroblastoma cells. There are also other spots in the body that take it up (called "uptake") like the bladder, the kidneys, the salivary glands, the heart and the liver. Since I had tumor activity in my liver initially, we are waiting to compare next week's CT with the MiBG and hoping that they still give us the all clear.

When it rains, it pours....we also found out that I'm FINALLY HAMA negative! Which means we get to return to NYC for the antibody treatment. It's not definite yet, but it will probably be the week of August 12, or possibly August 6. I don't think my Grampa will be able to go this time. Summer is his busiest painting season. He is probably disappointed that he won't be able to have any Indian food with mama. :) (One of them really likes it, the other doesn't, but I won't tell who!) My daddy might be able to go, and if not, maybe Gramma.

I'm getting my glasses today. We'll try to post some new pictures so you can see what they're like!

Tuesday, July 23, 2002 at 09:05 AM (CDT)

We got great news this morning: my bone marrow results are clear! Hooray!! One test down - 3 to go!

I had a great weekend. We went with our neighbors (my pal Brittany and her family) to their lake house. It was a beautiful weekend, and we had lots of fun. I got to play in the water (just my legs, I can't swim in lake water with my Broviac) and I even rode a jet ski!! It was so exciting, I reverted back to my baby signs for "more" rides! I had a great time playing with Brittany, but for some reason, I have a really hard time sharing with her little brother Brandon. I am just not very nice to him. Maybe I don't like having to share Brittany's attention.

I have my MIBG scan tomorrow. Wish me luck!

Tuesday, July 16, 2002 at 10:44 AM (CDT)

Oh, so much to update on! I'm sure we'll leave some stuff out, but here goes...

We made it back home to Florida after 2 wonderful, fun-filled weeks in Iowa. I met so many new friends, and had such a great time! I was never in bed before 10 p.m., so I'm catching up on my sleep now. Yesterday, my first full day home, I took a 4 hour nap! That is not at all like me! But I was so busy at Gramma and Grampa's that napping was just not on my list of priorities.

We'll start with the news that's at the forefront of mama and daddy's mind: I went to the eye doctor today, because my left eye has been watering for about 3 weeks. This was pretty unsettling to my parents, because before I was diagnosed, my right eye watered all the time, and then a tumor started to grow there. Well, my left eye still looks normal, but they can't help being nervous Nellies. So the eye doctor did a special little test today, and said I have a blocked tear duct. He said there could be a million reasons why it's blocked, but of course, with my funky history we can't be sure it's not a tumor, but my upcoming scans will tell us if that's the case or not. So it's a little relieving that it's just a blocked tear duct, and everything else looks okay, but not quite relieving enough! But guess what? He also said I need glasses! I'll look just like mama! People will think I'm even smarter!!

I have an MIBG scan next week (hopefully...) - remember, that's the special radioactive scan, kinda like a bone scan, that is sensitive only to nb. So anything that lights up is probably cancer. This Thursday, I have a bone marrow aspiration and biopsy to check for any cells there. And the 30th I have the grand slam finale, bone scan and CT of everything I own.

Now, just a few highlights of my trip: I saw the 4th of July parade in Earlham and played at the park with my new special friend Vicky; I had lots of fun with my cousins Leah and Lindsey; I got to ride horses and play with baby kitties at Uncle Wayne's and Aunt Judy's (I now ask mama and daddy to play "Joe and Easy" - that's the name of 2 of Wayne's horses, Easy's a baby and Joe's a senior citizen horse!); I played with lots of kids while mama had some friends over for a little reunion; I danced and danced with another new special friend Erik (and I'm honored, Joan, that you showed me "where they took the cancer out"); I made s'mores late at night outside with gramma and grampa; I got ice cream from my special friend Susan and played with all the toys at her house (played a little with Matt and Luke, too!); I caught lightening bugs with "my friend" (and 2nd cousin) Kati; I ended every day by asking Gramma to read me a very old book from when mama was a little girl "Nicky Goes to the Doctor" (of course, I knew everything he was going through and was very interested in discussing it); I went to a birthday party for our friend Linda and sang her a solo verion of Happy Birthday; and oh so much more. It was loads and loads of fun!

Please keep me in your thoughts as I have my tests this week and next. Hugs to all!

Wednesday, July 03, 2002 at 09:26 AM (CDT)

Greetings from Earlham, Iowa!

We are enjoying seeing the sights and visiting with family and friends. Lest you laugh, I am more than thrilled with everything there is to do here! I've been extremely busy, busy, busy: playing with MY dollhouse, playing at the park, visiting my grampa at "grampa's work" (he's painting a house just 3 doors down, so we get to take him snacks and drinks and take his coffee breaks with him), going to the library, going for ice cream at Montross Pharmacy where my new special friend Susan works, and playing with lots of kids! So far I've played with some of mama's old friends kids: Taelor & Trent Williamson, Matthew & Luke Varner, and Isaac & Kaleb Sobek.

I've also had fun with cousins Leah & Lindsey. They have LOTS of fun toys. We also went swimming in their pool. It looks like Snoopy. But I wasn't thrilled with having to share my mama with them! I wanted their daddy all to myself, but when my mama played with Leah (after Leah finally let mama hold her...) I had to stop what I was doing and say, "No, that's my mama! You put Leah down!" Mama tried holding both of us at the same time, but that didn't satisfy me. I did settle for Aunt Mimi holding me, but I kept a close eye on Leah the whole time.

I am excited for the 4th of July festivities here. I've heard about a parade, lots of games and kids at the park, and fireworks. I love fireworks! Fireworks are what help potty train me. My daddy promised to do fireworks if I went peepee on the potty, and I did, and the rest is history. I've only had one accident here so far. It was on Gramma's carpet. And anyone who knows my Gramma and her penchant for cleanliness would know that was a major no-no! But since it was me, it was no big deal. Even I was very surprised when I had my accident. I kept saying, "Oh No! What happennned? What happenned?"

Please keep sending that strong energy to me and all my special friends. Annie in Michigan and her family could use some special encouragement. Send them your messages at www.caringbridge.com/mi/anniekelly.

Thursday, June 27, 2002 at 07:58 AM (CDT)

Well, we found out I'm still HAMA positive. The bad news is: I can't continue with the antibody treatment in NY until that goes away; the good news is: my mama and I are going to Iowa for a visit! We are leaving on Saturday and we're going to stay 2 weeks. I am very excited to go, because there is a doll house that was mama's when she was a little girl, and I REALLY want to play with it. I said maybe cousin Leah could play with it, but not Lindsey because "she's too yittle." I'd like to leave right now, but I know there are some things to do first. I tell mama and daddy, "we need get ticket, pack suitcase, get shoes on, ride airplane, then Grampa's house and play dollhouse!"

I am feeling good and am "officially" off my prophalactic meds (antibiotic, antifungal and antiviral), but actually mama unofficially took me off them a week or two ago. When we get back from our trip, we hope to complete my 6 month re-evaluation (CT, MIBG - the special radioactive isotope that specifically "lights up" nb cells, and bone marrow tests). There's always something out there to keep our hearts beating a little faster!

I am officially a dinosaur-fanatic! This weekend we went to the Museum of Science and History, and saw real dinosaurs. I even got to pet them! (They were really animatronics):-). Then the next day, daddy took mama and I to see my dinosaur movie at the IMAX theatre. My second time seeing it, and mama's first. I like dinosaurs so much, I even talk in my sleep about them! The other night when daddy came to bed, I said, "2 dinosaurs...2 dinosaus...Ina only." "Ina only" is my special phrase meaning, "Hey! That's just for ME!!"

I am doing great on the potty. I've only had a couple of accidents in 2 weeks. I'm too intimidated to do #2 on the potty, but we're working on it. I have also discovered a great way to prolong bedtime and/or do things I know I shouldn't do (like climb on the furniture). I just say, "But mama/daddy, I need exercise! See, I exercise!" That seems to be a difficult thing to argue against, because it IS important to exercise!

Thanks for your continued prayers and special energy for me and all my friends living with this tricky disease.

Tuesday, June 18, 2002 at 04:17 PM (CDT)

I am so excited to announce: I've worn big girl panties all day with NO ACCIDENTS!! I've gone on the big girl potty all day, and it's getting easier every time! Visit my pictures and you can see me wearing my big girl Blue's Clues panties. My Gramma is sending me some Barney "underwears" (as I call them)and I can't wait to try those out!

I've finished my 3rd round of Accutane with very little skin difficulty and NO behavioral trouble this time. My only trouble has been dry lips and the soles of my feet peeled off. But the rest of me looks pretty darn good.

Mama and I went to the book store for story hour yesterday and I got to meet Curious George. There were a ton of kids there. That was what was most interesting to me. The other kids were pretty excited about seeing a great big monkey, but I wasn't too impressed. See, I've seen a lot of dressed up characters throughout my hospital stays, so it's just old hat to me. I can't believe it that just a year ago, I was such a baby that when Barney came into my room at the hospital, I got scared and put my head in mama's lap and cried, "All done! All done!" Wouldn't you know, now that I'm a big girl and such a Barney fan, I haven't seen him since!

Just wanted to share our big potty news! Sometimes it's very exciting for these little normal things to happen!

Sunday, June 16, 2002 at 06:45 AM (CDT)

Happy Father's Day! My present to my Daddy on this Father's Day is to let him sleep in. He has been getting up in the middle of the night for the past 2 weeks to watch World Cup Soccer on TV. So he is very tired!

I am doing great! I'm even growing hair again! (Mama and daddy were worried; a side effect of radiation to the scalp can be that hair doesn't grow back, and it seemed to be taking a loooooong time to show any signs of life...) Right now, I have a nice soft peach fuzz. It's very surprising to me. When we go out in a breeze, I put my hand on my head, and say with surprise, "I have hairs!" But sometimes, like in the tub when I have to have my hair washed, I say, "I don't like this hairs!" There are some benefits of being bald for most of your life....one of them being easy clean up!

Yesterday I had a great time playing at the park with daddy's friend from work, Glenys. Daddy played tennis with her husband and mama and I got to hang out with her. It's always fun for me to play with someone besides my boring old mom. Glenis and I picked up about every pine cone in the park. I got to bring one home, and we're going to make a bird feeder with it.

Not much other news here. Please keep that energy coming for our friend Annie in Michigan. You can send her a message at www.caringbridge.com/mi/anniekelly as well as all the families living with this disease.

Monday, June 10, 2002 at 10:45 AM (CDT)

We have some new pictures. Be sure to see how tall my sunflowers have gotten!

Not much new here; no news is good news! My blood cultures are now negative. I'm still doing my "medicine ball" here at home. We'll just hope this medicine knocks out that bacteria for good. Kristin (my nurse) told us that this bacteria can decide to stick around in central lines. We don't want that. If you get repeat infections in your line, they have to pull the line. I love my buddies, I don't want them to be taken away yet!

Tomorrow marks 6 months since my second transplant. Remember, our docs told us the first 3-6 months post-transplant were "critical" for relapse and secondary problems. The tricky thing about neuroblastoma is that it can decide to come back at any time (compared with some cancers like leukemia, where after 2 years, you're considered "out of the woods"). But keep that good energy coming for a lifetime of 6 months without incident!!

I am doing my third round of Accutane. Remember the first round where I screamed and cried everytime I had to take it? Well, now I am happy to report, I LOOVE taking it! I take it like the biggest girl! I say, "I hold it, but no squeeze!" and then I put it in my mouth and chew, chew, chew til I get all the medicine out, and then I even swallow the capsule! It's amazing how far I've come with my medicines.

We will repeat blood work to test for HAMA again next week. If it's negative, we'll go back to NY for treatment the following week. If it's still positive, we've decided we may make a trip to Iowa to see family and friends.

Please keep the energy coming for me and all the special kids living with this disease.

***Please send some extra-special energy to a little girl from Michigan that we met in NYC. Her disease has become very resistant and fast-growing. She and her family need lots of strength. Visit them at www.caringbridge.com/mi/anniekelly

Monday, June 10, 2002 at 10:18 AM (CDT)

Tuesday, June 04, 2002 at 07:14 PM (CDT)

Well, we found out the reason for my fever and chills. I have some kind of unpronouncible bacteria. But I haven't had a fever since Saturday, so that's good. I am going to do 14 days of antibiotics, and the good news is...I get to do it at home! The home health nurse will deliver this clever little contraption -- it sort of looks like a ball -- and it's pressurized and has the medicine in it. So mama just puts it in a fanny pack and straps it to me, and away I go!

When we found out about my positive blood cultures (that's the bacteria), we thought we were going to have to be admitted to the hospital. In fact, mama and daddy told me that, so I went to get my things ready while they paged the doctor. I got my basket of Teletubbies and hung them on the door knob and got my shoes ready, and then....the doctor said we didn't have to be admitted unless I had a fever again. I was SOOOOOO upset!! I laid on the floor and cried and cried, and said, "I wanna sleep at the hopital! I wanna sleep at the hopital!" Mama and Daddy were happy we didn't have to go in, though.

My sunflowers are about to open in my garden. Tonight we caught some big grasshoppers on them. They are eating the leaves. Luckily Emma the dog eats anything, and she gobbled them up. I thought that was pretty funny. Mama and Daddy laughed and laughed this morning when the garbage truck came. I like to run to the window when I hear it, and watch them work. This morning I turned around very seriously, and told mama and daddy, "Garbage truck take Ina's poopy diapers away." I guess I think that's the only thing we throw away!

Be sure to visit our friend's links at the bottom of the page. And a little boy in France is wanting some postcards while he is in the hospital for his transplant. He is four, and would be especialy impressed with international mail! Here is his address:

Maison Ronald McDonald
ATTN: Victor Dufau
Institu Gustave Roussy
39, Rue Camille Desmoulins
94800 Villejuif - France

Sunday, June 02, 2002 at 11:16 AM (CDT)

My Gramma left yesterday. I got to go to the airport with her. We went early so I could play in the playhouse they have there. I had lots of fun! I made a nice new friend there, and when she had to go, I was very concerned: "Where'd my friend go?"

Gramma, mama & I had a nice girls' day out on Friday. We went to the zoo and then out to lunch. I'm not sure what I liked more at the zoo, the animals or the fact that we rented a special stroller for me. I enjoyed pointing out all the other kids who had special strollers like mine. Then we went out for a nice Thai lunch. I was the best, most grown up girl! I got my own plate of rice, and requested lots of broccoli! Who's ever heard of a 2 year old loving broccoli? But mama says that's good for me so I should eat it up.

I think my body got upset that gramma left because last night at bedtime I came down with fever and chills. I've never had chills before so mama was a little concerned. We had to make an emer. room trip for some antibiotics. But you know I wasn't complaining! I love to go to the "hopital." Even though it was 11:00, I said, "Yeay! Go to hopital and get nose buddies?" (I only had a "nose buddy" once -- it was actually an n-g tube after surgery -- but it made a big impression on me!) So we went and it was our lucky day -- there were no other kids there, so we were in and out in just a couple of hours and we got to come home. So far, so good with the fever, it hasn't come back, my appetite has been good, and I've been playing, so maybe it was just a little virus. I'll have to go back to the "hopital" tonight and visit my friends on the 5th floor and get another dose of Rosefen though.

Have a good weekend!

Wednesday, May 29, 2002 at 08:46 PM (CDT)

Another busy day with Gramma! Today I had a massage therapy appointment. Gramma was skeptical at best (she's a bit of a stinker, maybe that's where I get it from...), and by the time we got there, she was really a doubting Thomas. But I had a nice massage and the massage lady showed mama how to give me a nice rub to stimulate my immune system. Then we went out to lunch -- Chinese, and I ate really fast because I was hungry, unfortunately, eating single grains of rice quickly doesn't add up to too many calories -- and then we went to the library where I got to pick out some books and videos. If I'm good and still here (yes, we think I must still have a HAMA so I can't do the NY antibody treatment YET), next week, I'll get to go back to the library and see Spot! He is a cute little dog and I really like to watch him on one of my special videos.

Then Gramma took me down the street to a bakery, and I got to pick out a cookie. I chose sprinkles. I ate about half of it, and when mama finally came down to the bakery, I announced loudly, "I need a bathroom! Ina has poopy pants!" Mama and Gramma tried to tell me to talk more quietly, but I thought maybe they didn't hear me, so I talked louder and told them again. Then I tried to tell them a few more times, but nobody would listen so I just had to wait.

Tomorrow mama has lots of things to do (ALONE! OUT OF THE HOUSE!) before Gramma goes home. So it's just me and Gramma all day. We are going to paint some birdhouses, one for me and one for Gramma to take home.

We have some links at the bottom of the page to some special kids websites. Daniel is in transplant right now, which gets really boring and long and yucky, so it's nice to see lots of messages sending good energy. And John Russell and Sierra are my special friends who could use lots of positive energy for the extra nb hanging around.

Thanks, we think all the positive energy helps (no matter what Gramma thinks!)

Sunday, May 26, 2002 at 07:52 PM (CDT)

Happy Memorial Day! Of course Memorial Day makes us think of those we've lost, and that makes us even more grateful for today!

I have been so busy with my Gramma, I haven't had time to update. I spend all my time bossing her around. I am so used to saying, "C'mere Gramma. Gramma, let's play!" that sometimes when my daddy comes home from work, I say it to him. Then I have to kind of stop, and shake my head and repeat it, but say Daddy instead. Gramma wonders why I won't listen when she asks me to "c'mere." I have a new response to any of those kind of requests: "Just two more minutes!!" (of course, I don't seem to know the difference between 2 minutes and 2 seconds, so that's okay for now!)

I had a wonderful holiday today. We went to church this morning and I sat next to a little girl my age, and we had a wonderful time. I did such a good job sharing, you would have been amazed! I almost did too well....I really wanted her to share my things, even when sometimes, she had a different idea in mind! Then tonight we went to a cook-out at my friend Sophia's house, and there were lots of other kids there. I had a blast!! We played tee ball, and play-dough, and all kinds of fun things. And my mama is very proud to report, I ate the best out of all the kids there!!

My appetite does seem to be getting a little bit better. I'm no longer pushing food away. And today I ate a whole hotdog and toast for breakfast! I seem to be able to say when I'm hungry more accurately too. We have to celebrate the little victories here! Although this has seemed like a big struggle.

Hope everyone has a great holiday weekend!

Saturday, May 18, 2002 at 01:38 PM (CDT)

We've had a good week. My appetite is still a struggle, but no other news to report.

We had a wonderful outing today! We went to a Child Cancer Fund sponsered event where there were little trains we could ride, and horseback riding and face painting! It was soooo fun! I rode a couple of different horses, and you'd think I rode horses every day! Then I got to ride a couple of different trains too. One was like an old fashioned steam engine. The other was a fancy new train. We had lunch there too, and I ate pretty good! So all in all, it was a great day.

I had such a good time, I must have been dreaming about it on the way home. I've been singing "Down by the Station" for a couple of days in preparation for our outing. And on the way home, I was sleeping, and all of the sudden I sat up and sang, "Down by the station, early in the morning..." then promptly fell back over and fell asleep.

My Gramma is coming for a visit tomorrow. I'll let you know what kinds of trouble we get into!

Friday, May 10, 2002 at 03:45 PM (CDT)

I am still getting over whatever caused my fever last week. I now have an icky snotty nose and a cough. Can you believe it's the first time in my whole life I've had a cold? Even throughout all my immunosuppression following chemo, I never caught even a little tiny cold. So I guess if that's all that I have to complain about, I can handle it!

Mama says you'd think I was the sickest person ever, though. She says it takes her about 6 hours to get all my meds ready every day. Twice a day she lines up 4 syringes of different medicines. And now I'm on Accutane again (which we are happy to report, I take like the biggest, bravest girl!) and on Friday, Saturday, and Sunday, I take Bactrim a special medicine most cancer patients are on to protect them from a certain kind of pneumonia. So yes, on the weekends, that's 6 medicines twice a day! Mama lines them all up, and I get to choose which order to do them in. I take an antiviral, antibiotic, antifungal, antihistamine (this one is brand new, to stimulate my appetite), Accutane on ice cream, and then Bactrim. Most days I do it "all by self", but some days I think it's funny to run away, then mama has to chase me, and either shut off the t.v. or tell me I'll have to go straight to bed if I don't take my medicines. Then I open wide and get it all taken care of.

My new medicine for my appetite seems to be working a little bit. The past couple of days I've said, "Hear my tummy? I hungee!" And then I say, "I need a snack!" or "I need bekfast!" (no matter time of day it is!)

This weekend we will post some new pictures to the website. We'll take some pictures in my special garden. My grampa gave me a special sign and lots of special plants for my garden, and one of my flowers has a pretty bloom. So we'll share it with you!

Sunday, May 05, 2002 at 03:45 PM (CDT)

We are finally having some tolerable weather here. It's been very hot, over 90 degrees most days for the past week, so I haven't been getting out much. But today is nice and cool, and I've been out playing in the neighbor's backyard with my good friend Brittney and her baby brother Brandon. They got a new castle play house and I am always anxious to play in it!

We are awaiting blood test results to see if we can return to NY for treatment. We should find out the answer Tuesday or Wednesday of this week, and if results are negative(meaning my HAMA went away) we'll head back up there next week. If not, I guess that means we're just supposed to enjoy our time at home some more.

I haven't been feeling too well this week. I've been fighting something, and I've had a fever off and on for a few days. I got 2 doses of IV antibiotics (the standard course of treatment for us cancer kids, even if they don't know what's causing the fever, we get some antibiotics). So far my blood cultures are negative for any bacteria, so that's a good thing. Today I have a very congested runny nose and a little cough, so maybe that's what I've been fighting all week. I feel like a very big girl because I did my temperature in my mouth for the first time this week! "Like mama!" I say. I usually do it under my arm, but now I say, "Do it in mouth," and I sit very still and act very proud.

A special internet friend of ours lost her battle with neuroblastoma last week. But she now has a special foundation, and we thought we would let you know, in case any of you would care to make a donation and spread the word. Neuroblastoma is the second leading cause of cancer death in children (other than brain tumors), but it gets relatively little money for research. This fund is set up specifically for nb research.

Toireasa's Dream/CHOP
Mr. Carl Swansen
Children's Hospital of Philadelphia Development Office
3535 Market St.
Philadelphia, PA 19104

caringbridge.com/page/toireasa

and we also want to plug one of our personal favorite foundations; this fund provides $$ to Sloan-Kettering's NB research team, as well as "fun money" for families undergoing nb treatment there. We've done some fun stuff in NYC with this money.

Catie Hoch Foundation
c/o Larry Hoch
27 Southwood Dr.
Ballston Lake, NY 12019

caringbridge.com/page/catiehochfoundation

Thanks and SPREAD THE WORD!

Wednesday, May 01, 2002 at 09:40 AM (CDT)

We're breathing a little easier. My CT results are clear. I haven't been complaining "bottom hurts" for about a week, but I do complain off and on that my tummy hurts. This could just be related to not being used to eating a whole lot, and forgetting what hunger pangs feel like. Then when your tummy isn't used to eating, it sort of hurts to actually put food in it, so we avoid eating, and a vicious cycle starts. But I always try to put a little something in my tummy.

Today we are trying BIG GIRL PANTS ONLY for the first time all day. So far, so good. No accidents. But also not pee-pee or poopy on the potty, so it may just be a matter of time.

We're not sure if I'm just 2 or if I'm having some behavioral difficulties from the Accutane. I have had several on the floor screaming episodes in the past couple of days. Often because I'm told "no" about something I know I shouldn't do anyway. Yesterday it was picking at the dry skin on my lips (I try to hide where I think mama and daddy can't see me, but somehow they always know I'm picking....) When they say, "Don't pick, Lina," I have a fit and say, "Yes pick it! Yes pick it!" and then I put my face in the floor and have a real heart-breaking cry. This morning mama caught me sitting on the coffee table (why is it always so tempting to do what we know we shouldn't do??) and when she told me no, we don't sit on tables, oh, did I ever cry. "yes sit on tables! Yeeeeessssss!!!"

But otherwise, all is well. We are very happy with our results so far. Our doctors told us the first 3 to 6 months after transplant was "critical" (for secondary problems and risk of relapse), so everyday we X another day off on the calendar is a wonderful day! We are now about a week away from 5 months post-transplant. And we're sure all the positive energy we get from y'all is helping! So thanks!

Sunday, April 28, 2002 at 02:03 PM (CDT)

I've been a busy girl since we updated you last. My Baba Rak went home to Yugoslavia yesterday. I had some trouble getting along with her at first, but pretty soon we were the best of friends! I thought about going on the airplane with her to go to her house, but I changed my mind at the last minute.

Daddy took Baba and I to the IMAX theatre last weekend. For those of you who haven't experienced this, IMAX is a great big huge movie screen, something like 6 stories high and really, really wide. We saw a movie about dinosaurs. Daddy thought it might be too scary, but I enjoyed it sooooo much! When it was over, I made my hand sign for "more" (I only use these baby signs when I'm REALLY excited...) and when we came home, I told mama all the details. She said I sounded just like a big girl, telling all about the movie.

I had a CT of my chest, abdomen, and pelvis this week. We will find out the results sometime this week. I have been complaining off and on that my tummy hurts, and I had lots of "bottom" pain for a few days, so the CT will hopefully rule out any kind of nb causing the pain. My urine tests have come back negative which is a good sign that there are no tumors.

Last week I also finished my first round of Accutane. I have to take it for 2 weeks and then a couple weeks off and do that 6 times. I makes my lips very chapped and cracked, so mama always has to put "lipstick" on me. The Accutane combined with the skin burns from radiation made me look like lizard girl for awhile. But my skin looks pretty good now. Mama and daddy thought we were in for a terrible time with the Accutane. It is different than my other meds, and I really hated taking it. I would scream and cry, "No Yellow! No Yellow!" and after the first week, when I was a bit more sophisticated, "No Accutane, no accutane!" They tried to sneak it into all kinds of stuff, but I was too smart for that. But finally, on the next to the last day of Accutane, I took it without a struggle and boy, did that make mama and daddy excited! They jumped around and clapped and yelled! So of course, when I took my next 2 doses, I waited for them to do the same. They were happy to do as I expected.

We are staying home in Jacksonville for a few more weeks at least. I developed a "borderline HAMA" (antibody to the treatment I get in NYC). Of course, we wanted to stay on schedule with the treatments, and we do hope the HAMA goes away quickly, but mama did secretly tell me she was glad we got to stay home a little longer!!

Friday, April 19, 2002 at 12:24 PM (CDT)

Happy Friday to you all! I have had the most fun this morning! I had my picture taken by a photographer who is doing a calendar for the Jay Fund, a charitable organization associated with the JAX Jaguars to benefit children's cancer. The theme is "When I Grow Up..." and all the kids -- they asked for only CUTE ones, that's how I got to do it -- dressed up like some grown - up kind of thing. After some deliberation (with all my medical knowledge, we thought doctor, but apparently all these kids with cancer are pretty smart about medical stuff and that idea had been taken...), anyway, we decided I would be a painter. Like my Bampa. And I actually got to paint stuff! With a brush and a roller! It was so fun. The photographer lady also had a really neat playhouse at her studio, and I got to play outside in that when we were done. After my session, Helen, a little friend of mine from the clinic came, and we got to play a little bit. She is being a hula dancer! With a grass skirt and everything! I *really* wanted to play with her some more. I even reverted back to my hand sign for "more" saying, "c'mon! play more! play more!" which I only do when I am really excited.

All of our test results are clear! Yeay! Mama and daddy have almost relaxed, although they say, you never quite relax, you just are a little less conscious of being so stressed. Today we are waiting for blood counts (still low as of Tuesday) and results from BIS, a lab in CA that can detect one in a million NB cells. Mama and daddy aren't too concerned about BIS. One of the things they learned from NYC and other parents is: BIS lab is involved in a kind of "political" controversy where some cancer centers don't even use their results (Sloan-Kettering being one...) for lots of reasons, but for one thing, they have a lot of false positives, meaning they say there is cancer and there's not, as well as false negatives! We, ourselves, have been victim of the false negative from BIS, so we know what people are talking about!

We've just been having lots of fun at our house. Our days are hot here in FLA, but the evenings are really nice, so we've been outside about every night after supper. I like to play with Emma, and feed her rocks. She always eats them when they're from me! I tell her "Good girl, Emma." I also tell mama -- and daddy! -- "Good Girl!" when they do something I like.

I tell them lots of funny things. The other night, it was mama's turn to put me to bed. She said, "Good night, my special girl," and I took her face in my hands and said, "Good night, my special mama." Yesterday my mama was sick, so I decided to try to make her feel better. I went to her bed, and asked, "Mama sicky-sicky? Here take Barney, you feel better!" And I gave her my special stuffed Barney from my radiation friends. She said she felt lots better then. I am also at the stage where I realize mama and daddy actually have OTHER NAMES besides mama and daddy!! So sometimes I call them Natalie and Vladimir just to show off. I ask a lot during the day, "Where Vladimir go? Go to work?"

Tonight we are going to the local American Cancer Society Relay for Life. It sounds like it will be lots of fun. Hope everyone has a great weekend!

Tuesday, April 16, 2002 at 03:30 PM (CDT)

Well, a *small* load is taken off mama and daddy's mind -- my CT today shows no abnormality in my head, as a matter of fact, my jaw spot is smaller!! Next week we will scan the rest of my body (yes, we know that makes no sense not to do it all together!). But the good news is that is shouldn't be neuroblastoma that is making my counts so low. It must be something else. We just have to wait and see if we can ever figure out what that is!

I am usually quite a naughty Stinker after a CT scan. The medicine they give me to go to sleep makes you very irritable. But today I had a nice long sleep and woke up so pleasant! I was even singing (very loudly and way too slowly, but singing is better than fussing!) and pretend sneezing over and over (and louder and louder!) until everyone would say "Bless You!" So it seems like everyone around our house is in a good mood this afternoon.

And by the way, this is my one year anniversary since diagnosis! It was just a little freaky to be back in that room where we heard the initial news. And the same doctor (radiologist) was even reading the scans today! She took a lot of time with mama and daddy showing them the old scans compared to the new and telling them she saw nothing concerning.

So thanks for all the good vibes. Hopefully they carry me through next week as well!

Sunday, April 14, 2002 at 07:00 PM (CDT)

Well, so far the GOOD VIBES are working. We have preliminary results back from the bone marrow, and they see no suspicious cells. They will do some special tests tomorrow, and then Tuesday I have a CT scan. They also collected some of my pee-pee to test for catecholamines in my urine (high levels indicate neuroblastoma in the body). Out of all the things I've been through in the past year, I really hate pee-pee bags! But I was a very brave girl, both for the putting on and taking off.

Meanwhile, I continue to amaze my mama and daddy everyday! Last night I had some owwies. I was laying in bed and I told mama, "I need Tylenol! Go get it! And get my Daddy too! And leave the door open!" Even my mama, who usually prefers being the boss, has to laugh at how assertive I am! Mama has decided it's time to work on numbers because everytime I see a #2 I say, "This one kitchen" (because that's the number I had to push on the elevator at the Ronald McDonald House to go to the kitchen). I can also tell you 8 means "Ina's room," 7 means "terrace," 9 means "deen house (greenhouse)" and a star means that's where you go outside. Mama has decided if I can recognize that, I can probably figure out about counting. I have all kinds of big changes mama plans to make. She also bought me some big girl panties this weekend, so I guess we're getting serious about the whole potty training deal.

Keep sending those GOOD VIBES and POSITIVE ENERGY. We'll let you know how it works out.

Thursday, April 11, 2002 at 07:11 AM (CDT)

Good morning, All!

I have a special request this morning...I am going in for a bone marrow procedure this morning. And we need all kinds of positive energy that the results will be clear!

We went into the clinic Tuesday morning -- just a quick visit because one of my buddies is blocked and my nurse, Kristin, was going to put some special medicine in it to see if she could get it working again. While we were at it, she took some blood. Well, the results came back, and made everyone a little concerned. My platelets and hemoglobin are a little low. They tried to do a bone marrow procedure yesterday, but it ended up that I needed some platelets first, so we're going in today instead.

I am such a pro at waiting to eat and drink until after procedures -- that yesterday, I asked for yummy yummy and mama said, "Well you're going to get some sleepy milk this morning," and then I said, "No yum yum but after sleepy milk OKAY!"

We sure will be surprised if the results from this procedure come back positive because I am just a ball of energy! I do nothing but play play play all day. My new favorite past time is "reading" photo album "stories." I especially like the pictures of me as a newborn in the hospital. I say, "I look at pupak owie" (pupak means bellybutton in Serbian). And I like to look at the picture of mama with an IV. I name all the equipment in the pictures. And I get mad at the little baby my Daddy is holding, and I say, "No! My Daddy! Go away!" Mama has to reassure me that that baby is really ME.

Well, we hope we have good news to post we when update you next. In the meantime, just keep that positive energy coming!

Monday, April 08, 2002 at 08:27 PM (CDT)

Home at last! I'm so used to being away that I keep saying, "I want to go home, mama." And mama has to remind me, "Lina, you are home!" When we were landing in the airplane, I heard the pilot say, "We're beginning our descent into Jacksonville..." and I got sooo excited, as if I knew what Jacksonville was! I kept saying, "Almost there! Almost Backsonbille!" Then when I got off the plane, I ran off ahead of mama, yelling, "Daddy...where are you Daddy??" Everybody got out of my way because they could tell how excited I was to be home. My Baba Rak was there too, and I had lots to fill them in on.

We went to the circus Friday night. I slept through the first half -- you can imagine how tired I was if I slept through THAT noise -- but I woke up during intermission, and really loved the second half. I saw the elephants, a guy that skated down a tight rope (I really liked that one!) and a guy that ran around inside some circle thing, kind of like a gerbil but suspended over the crowd. That one worried me. I kept saying, "Careful! Careful!" Then on the bus on the way home, my friend Sierra and I sat in the back with Grampa and he played Scratchy Monster with us. We had a blast!

I'm still adjusting to being home. It makes me a little clingy to be away from home for so long. Today I was very excited to go to the park. Mama and Baba took me, then mama left to go to the post office. When she came back, she had ice cream for us. But I was sleeping! At the park! Who's ever heard of that?! As soon as I heard mama, I woke up, and told her, "I cry Mama Mama! Where mama car? Where mama car?" Apparently I worked myself into such a frenzy that I wore myself out and fell asleep. But then I came home, watched "Little Bear" and felt a whole lot better. I even ate a whole scrambled egg..."all by self" as I say.

Have a good week!

Friday, April 05, 2002 at 08:15 AM (CST)

Today is the last day! I still haven't had any pain or hives, so we're not sure if I have a HAMA or not. The docs have said it doesn't necessarily mean anything, but we'll have to wait and see.

Tonight we are going to the circus at Madison Square Garden. I have been a much more pleasant girl the past few days, so mama hopes this continues. The last 2 days, she has had to force me to go to bed because I"ve been so busy playing.

We will be going home Saturday evening. My Baba Rak is there visiting until I come back for my next treatment. Maybe I can teach her how to play Scratchy Monster. Grampa plays that game very well. I am lucky he will still play with me after how I treat him at the clinic. I get so frustrated -- I just have to take it out on someone. I say, "MOVE grampa!" Then mama gives me the LOOK, so I say, Move PLEASE Grampa! He always does what I say. But then at night if Grampa tries to leave the room, I get upset and say, "Ina make coffee too!" I have learned that Grampa is always going to get coffee or make coffee. So now he takes me with him.

I will start on Accutane when we go home. Yes, that is the acne drug, but they have found it works against cancer tumors too. It is supposed to cause dry skin and chapped lips but few other side effects. Seems like I'm always taking something. Luckily

Monday, April 01, 2002 at 06:06 PM (CST)

I hope the Easter Bunny found everyone. I had the best weekend ever! On Saturday, we went to the Children's Museum and my friend Jenny (Daniel's sister) got to go with us! Even though she is 4 and sooo grown up, we play very well together. The Children's Museum had all kinds of fun things to see and crawl through and play with and do. We were very busy. We also walked through Central Park and ate ice cream and hotdogs there.

Then Easter morning we went to church. I really love going to church (mama is not sure where I get this from...) I saw Jesus and was very upset that I couldn't get any yummy-yummy from Jesus when mama went up for communion. I remember at my old church, I used to get communion too. After Church, we came home and saw the Easter bunny...again! I got a watch, actually several watches, and I chose one and told grampa Leah and Lindsey could have the other ones. But then I decided I wanted them all. I was a little upset that I had to share. After my nap, we went and saw "ET." I kept calling him a snake, and mama forget that there are some parts in that movie that are scary for a little person. I had to sit on mama's lap, and she said she could feel me getting tense and holding my breath during the scary parts. But when it was done, I got upset and said, "more ET, more ET!" I told mama and grampa my favorite part was when the doctors were there and ET had a "nose buddy" (oxygen through his nose). I felt very comfortable during that part!

My friend Sierra is back this week. That made my day today at the clinic. It's good thing something made me happy, because nothing else did today. My meds made me very cranky and unpleasant and mama really can't wait for me to go to bed. Imagine a 2 year old with no nap, lots of narcotics, and benadryl and if you imagine it's not enjoyable, you've got the basic idea.

Time for supper! I'm going to eat a hotdog.

Thursday, March 28, 2002 at 06:18 PM (CST)

Almost done with week #1. Everyone is pretty suspicious that I have a HAMA (that means "human anti-mouse antibody" which basically means my body eats up the medicine before it can do anything). HAMA isn't necessarily bad, the doctors just like to get 4 cycles of treatment in before you develop a HAMA. We won't know until we go home and send our blood work back to Sloan-Kettering if I am officially HAMA positive. So we will just continue with treatment like usual next week. They expect to see pain and hives and I have had neither any day this week.

I haven't been as much of a stinker the past couple of days. But mama has been a bit of a stinker. She thinks it's funny to tease me when I'm just minding my own business by saying, "Lina, look how close Grampa is to you..." Then I get *really* upset and say, "Grampa, move PLEASE!!" Grampa, unfortunately, does not find this as funny as mama does.

I have been having fun at the Ronald McDonald House and in the playroom at the clinic. The other night, I met the easter bunny! I was very impressed. We had an easter egg hunt, and I was especially interested in the marshmallow Peeps candy. I got a whole basket full and was sure to eat the heads off each one. The clinic is always sure to have lots of messy projects. Today they announced "Toddler Time" over the loud speaker, and I -- who have never even heard of Toddler Time -- got very excited and yelled, "Yeay! Toddler Time! It's Toddler Time!" and boy was I right to get excited! We went to town with shaving cream. I especially liked it because it reminded me of home.

I am feeling much better from my radiation and have gained back the weight I lost. I lost almost 2 pounds. But mama is sure to keep me filled up with something all the time now, so my weight seems to go up a little bit everyday.

This weekend we will probably go to the Children's Museum. Someone came from there to the clinic yesterday with an activity for us, and I didn't move from that table for about an hour. So I'm sure I will love it! Happy Easter to everyone!

Tuesday, March 26, 2002 at 05:56 PM (CST)

Two days of treatment under my belt. I'm such a pro! I haven't had much pain, but I sure have been a stinker! Yesterday I got very upset with Grampa during treatment. I kept saying, "Move PLEASE Grampa!" I wasn't satisfied until he moved where I couldn't see him. Then at home, I got upset when he wasn't around, but then when I saw him I cried and said, "Grampa scares me!" Good thing Grampa has thick skin! Mama thinks Grampa scares me because all the coffee he drinks makes him look like a mummy. But I think I was just a stinker.

But at least I don't discriminate! Today I said, "Move PLEASE!" to mama. But then I cried and said, "Mama lay down!" Damned if you do, damned if you don't.

Well, they're ready to close the computer room, and then there's an easter egg hunt. Gotta go!

Friday, March 22, 2002 at 11:09 AM (CST)

Well, the good news is: I'm feeling a little better. The bad news is: I'm not feeling very good. The radiation seems to be catching up with me. Yesterday was about my worst day. I kept saying, "I sick" all day and falling asleep at the drop of a hat. My tummy, mouth and throat all seem to be bothering me. Radiation can thicken saliva too, and that's making it hard to swallow, and making me kind of nauseas too.

I did feel well enough last night to go out and throw the ball for Emma and to do some yard work with mama and daddy. They put in some borders around our landscaping and I got to put some stakes in the ground to hold it. I like to be in charge (some people call it bossy), and I told mama and daddy exactly where to put things, always saying, "Next...next..." Today I'm a little out of sorts, but I did feel well enough to get out mama's "yogurt" mat and do some yoga. I said, "C'mon mama! Yogurt!" and I rolled around a little bit. Then she showed me some poses and I did them really well! I like butterfly, child's pose, and cat pose the best.

We are leaving for NYC tomorrow. So mama is packing. I keep saying, "I ready! I ready go to York!" and I know grampa is going there on a plane too. I hope the Easter bunny finds me at the Ronald McDonald House. I'm sure he has a lot of goodies for the kids there.

Monday, March 18, 2002 at 05:59 PM (CST)

I finished my radiation today. But it was kind of a sad day; they were all so wonderful there, and I had so much fun seeing all the staff and doctors. On the weekends, I always ask, "Go see Dr. Heppel? Have sleepy milk?" and I get kind of insistent that I need to go even though it's the weekend. So I can't imagine not going during the week! I got some really nice presents today from my anesthesia nurse and from the clinic staff. One of the patients even gave me a little bunny! I will miss everyone there, but we agreed I could come back to visit every year on my remission anniversary.

Mama and I will be heading back to NYC sometime to begin my next treatment on the 25th. We decided to try flying with the Corporate Angel Network, but one of the tricks is sometimes they call you and say "Be ready tomorrow!" The benefit is it's free (gotta love that!) and some of our friends at the RMH in NYC flew with their own private stewardess, had gourmet meals, had a limo pick them up, and had a helicopter ride over Manhattan. So that makes up for any inconveniences! We're still not sure we'll get a flight, but we'll let you know.

I seem to have entered the MTV generation. I have a new favorite song I'm always singing. "Hey Baby" by No Doubt. I always ask for it in the car, and at home I sing, "Hey baby hey baby hey! Boys tay, boys tay" Then I dance around in circles. Daddy found the song and video for me on the internet. I got so interested in the video, I quit singing and dancing, so mama and daddy decided I better not watch videos. Now I just listen to the music.

Tomorrow I'm going to my usual clinic to see my nurse Kristin and Linda, my special friend. Mama and I are going to take them some Easter sugar cookies made with a fun new thing we got. It will be like playing with PlayDough. The other day, mama and I were playing a game we play, where she asks me if I know who loves me, and then she names everybody she can think of. But this time, she asked me, "Who do you love?" and I thought for a minute and said, "Linda. And Kristin." So you can see, I really enjoy all my treatments and medical trips!

Hope everybody was able to send our friend John Russell a post card!

Wednesday, March 13, 2002 at 09:16 PM (CST)

We're going to start this one off with a long distance dedication:

We have a special friend in Pennsylvania who is collecting post cards, and we thought some of our wonderful friends and family might be able to contribute. Be sure to send some positive energy along with the post card. John Russell has some pretty tough neuroblastoma cells in his little body, and they need all the encouragement they can get to clear out! Here's his address:

John Russell Lorenz
408 Circletop Ln.
West Chester, PA 19382

By the way, his mama and her family are from Iowa!!

You would never know I'm supposed to be tired from these radiation treatments. We leave every morning at 7:00 and when we get there, I ask for Dr. "Heppel" (Schoeppel). Then one of the nurses walks around with me looking for Dr. Heppel. Sometimes I find her, sometimes I don't. Then I say, "I'm ready! I'm ready for sleepy milk!" Sleepy milk is my anesthesia. It is white and looks like milk. It also makes me fall asleep immediately. So I get all ready with my blood pressure cuff, and my pulse-ox on my finger, and my ekg stickers on. I make sure to tell the nurses where to put everything. And then we count to see how many cc's of sleepy milk it takes for me to go to sleep. I can usually only count 3 before my eyes start to roll.

After my treatment, I sleep for awhile and then drink some juice and then I sit up and say, "Sleepy milk all done!" Then mama usually tells me it's time to go home, and I say, "No home! No home! More sleepy milk! See Dr. Heppel!" Then I say good-bye to all my friends and go home til next time.

Tonight I took Emma for a walk and my special friend, our neighbor Brittany, went with us. She is 6, and I think she is the greatest! We took turns holding Emma's leash for awhile, and then she and mama took turns running with me in the stroller. I'm looking forward to next week -- that will be 100 days since my transplant, and I can be outside all I want without my mask and just play and play.

Hope everyone can send a postcard. Be sure to put where you're from so John Russell can see where all his energy is coming from!

Monday, March 11, 2002 at 07:47 PM (CST)

Another day of radiation down, 5 more to go! Today was a long day. We were at the clinic by 7:30 this morning for treatment #1, then home for about 3 hours, then back for treatment #2. Then right as we were ready to go home, we noticed a little crack in my central line. So we had go see about getting it fixed. I don't think mama and daddy were pleased, but when mama told me we might have to go to the hospital instead of going home, I said, "Yeay! Ina go to hopital! Yeay! Go to hopital!!"

So I was very excited to go to the hospital. We had to go to the ER to have a surgeon fix my buddies. We're not sure why a surgeon has to do it, when mama thinks we could just come home and slap some crazy glue on it and call it a day. But anyway, after being there over an hour and a half, they came in to tell us they were having trouble finding a repair kit. Then 2 1/2 hours after we got there, they just decided to send us home, because they couldn't find a repair kit anywhere in the whole hospital. I didn't really mind it, because I got to use a whole bunch of Q-tips, eat some candy, and play with the IV pumps, and swing from the rail on the walls. But apparently it wasn't exactly what mama and daddy had in mind for our evening. But we did get to stop for chicken on the way home, and I ate lots of it so I really don't think it was so bad.

Back tomorrow for more radiation. And hopefully somewhere in the city of Jacksonville, they will locate a repair kit and fix my buddies. We'll let you know.

Friday, March 08, 2002 at 05:52 PM (CST)

Happy International Women's Day to all you special ladies out there. Mama sort of wishes she hadn't told daddy that one mama's holiday was enough for gifts!!

I did my first day of radiation today. I had to go without drinking from midnight last night. I usually like to have some "unk" (I will say "milk" or the serbian word "mileko" if pressed, but "unk" usually gets my needs met) anyway, I like to have some unk in the middle of the night when I make my nightly pilgrimmage to mama and daddy's bed. But I couldn't last night, and I cried and cried. They told me, "Dr. Schoeppel said not until after your treatment tomorrow. We can't have milk until Dr. Schoeppel says okay." So first thing when I woke up this morning, I said, "Dr. Heppel, unk okay!!" But that didn't trick mama and daddy. I had to wait.

My treatments went fine. I did an hour treatment this morning and an hour this afternoon. Same thing through next week. I really like all the people there. They think kids are very special (This is the regional cancer radiation center so they see lots of adults, but thankfully not so many children). This afternoon, one of the nurses -- who always kidnaps me, and then later comes back and finds mama and daddy and says, Oh you can come too if you want -- she kidnapped me and I got to see a REAL LIVE BUNNY!! I have to say, it didn't impress me as much as seeing Dr. Schoeppel!

We are looking forward to a relaxing weekend. The weather is supposed to be near 80 and daddy promised we could go to the park. Mama also wants me to tell Grampa I was making a tail the other day. Ask me about making a tail the next time you call me on the phone!

Monday, March 04, 2002 at 10:18 AM (CST)

I had my simulation today. When I woke up from the anesthesia, I was really surprised to see red X's all over my tummy! I gasped, and looked at the nurse. You could tell I was thinking, "Don't they know they're only supposed to draw on PAPER??" I start my actual treatments Thursday, take the weekend off, and finish up next Friday. The treatments will be twice a day with about 6 hours in between. And only clear liquids in between so I probably won't be the most pleasant girl in the whole world. But that means we're just one step closer to clearing out all the cancer cells (they're all gone right now, but we're zapping all the sites of bulky disease with radiation just to be sure!) I have X's on my tummy (aimed at my spine), one off to the side of my tummy for my primary tumor site, one on my chest (for the left lung spot), one for the spot on my liver, and then I wear a special mask with X's for my eye and jaw. I sure like my radiation oncologist! Her name is Dr. Schoeppel, and this morning I had to walk all around the clinic calling, "Dr. Heppel!" I think I like her so much because she has all kinds of neat things she keeps in her pockets, and she lets me explore them.

I had the most exciting weekend! We went shopping for a big girl bed! I saw all kinds of fun ones that looked like castles, some with slides, some that looked like race cars...but I settled for just a plain white one. It's very special....only I can sit on it, "all by self" as I say. I slept in it last night for the first time. And I slept almost the whole night in bed all by myself. Then I had to get in bed with mama and daddy. But since we got back from NYC I've been insisting I need to sleep all night with them, so last night was a step in the right direction.

Well, I'm off to play some computer games on PBSkids.org. I can run the mouse all by myself and everything! I'm quite the little computer geek!

Tuesday, February 26, 2002 at 07:25 PM (CST)

No new pictures yet, but we're hoping they come back soon. I have been a busy girl since we got home! After a long absence, I have returned to my old favorite pastime: going to the store! I just love going to any store. I've gone to the grocery store and Home Depot. But I like going to the clinic even more! Today mama was going to a mom's meeting at the clinic and I went too. There were some cars ahead of us on the road so I had to yell, "No cars! Ina's clinic!!"

Too bad for mama that I wouldn't let her stay in the meeting. (Mama thought going during naptime was a bad idea, but live and learn). I kept saying, "Go see Linda, go see Linda." Linda is my special friend who takes my temp, blood pressure -- and lets me push the buttons -- and my weight. So we had to leave to see Linda. Tomorrow I am going back to the clinic for an actual treatment. Just a quick hour infusion of some meds to keep me going strong. So I'll get to see Linda and Kristin, my nurse, and play and everything.

Next Monday, I will do my radiation simulation where they decide exactly where all those beams are going. Then hopefully we'll start radiation Thursday of next week. But maybe I shouldn't say "hopefully" because it's going to be a long 7 days of twice a day treatments!

It's very beautiful here -- mid 70's -- and I've been playing outside alot. Today when Daddy came home he said I looked like a little piggy because I was so dirty. I thought that was pretty funny, because I'm not a pig, I'm a girl!

I sure miss playing "Scratchy Monster" with Grampa. That game consists of me running up and down the halls screaming while Grampa scratches on the door. I'm sure our neighbors at the Ronald McDonald House don't miss us. I try to get mama and daddy to play Scratchy Monster, but it's usually when they're trying to get me dressed or change my diaper, and I run away screaming, "Oh no! Scratchy Monster!" They really don't think it's too fun.

Well, I just told mama, "It's night-night time -- dark outside." so we'll write more another day.

Saturday February 23, 2002 6:58 PM CST

Yeay! We finally made it home! I kept saying, "I MISS you, Daddy!" all the way home from the airport. Daddy was so surprised to see how much hair I've gotten. And he says I look older too.

All in all, my treatment is going okay. I don't have too much pain -- we even had a few days where there was NO pain, which made us worry that the treatment wasn't working (that's called developing a HAMA - human anti-mouse antibody). And by mid-week this week, I seemed to have adjusted to the treatment. No more sleeping 16 - 18 hours a night!

I had lots of fun, and made some great new friends. You can visit their websites at caringbridge.com/pa/sierrabereider (my special friend Sierra who I sometimes call Cereal) and caringbridge.com/mn/danielhammer (be sure to check out his cool face-painting picture!) I'm sure they would love your messages, since they've been at the Ronald McDonald House a month and counting!! And while you're surfing the web, you might want to check out caringbridge.com/page/catiehochfoundation -- we are going to buy a special lady bug pin. She was a special girl treated at Sloan-Kettering and now her family provides some "fun money" to other neuroblastoma families to enjoy their time in NYC.

We'll post some pictures of our fun escapades and write more later.

Sunday February 17, 2002 11:29 AM CST

One week down, one to go! The treatment has gotten much less painful, but boy, does it knock me out for the night.

But I had a great time yesterday. We went to Central Park and visited to children's zoo and the Central Park Zoo. At the children's zoo, I got to crawl around like a turtle, crawl through a log like a bunny, and lots of other fun stuff. Then at the Central Park Zoo, I got to watch them feed the penguins. I was very interested in that, but in the gloves the feeders wore in particular! Then we went to FAO Schwartz and spent lots of time there.

When we came home there was a Polish dinner. Mama and grampa said it was very good, but I didn't eat much, I was too busy playing with my friend Sierra. Then some kids in Polish costumes danced for us. It was so good! I kept asking mama if we could give them money (like we did for the musician in the park), and saying, "Jos dancing!" and making my sign for more! At the end, they played the music and the kids danced with us! It was a wonderful day!

Today we are lazy. And I'm a little irritable. Possibly withdrawal symptoms from the morphine. We may go to Times Square today or we may go to the Imax theatre to see "Beauty and the Beast" -- it depends on my mood.

Monday February 11, 2002 5:55 PM CST

I started my first antibody treatment today. It really went better than expected, there was pain (5 doses of morphine worth!) but mama thinks it's not the most painful thing I've ever done. But we have more proof that doctors don't know everything: the only side effects were supposed to be INTENSE pain and hives, but I've got some nausea/vomiting. And because they told us no nausea, we brought no Zofran (my special tummy medicine). Luckily, one of our neighbors here at the Ronald McDonald House had some they were willing to share.

It's especially unfortunate that I've been throwing up because I ate more today that I have in weeks, maybe months. Oh well, tomorrow is another day.

I got a special prize today from our Earlham friends, Susan and Bill (and their family). I got a whole box of art supplies and stickers. Believe me, they were very much appreciated by me (and about 5 other kids) because we had to be at the clinic so early, and the playroom didn't open til about an hour after we got there. There aren't many art supplies left -- and no stickers -- but it sure kept us busy and happy this morning.

Well, I'm sleeping off my drugs. The good news is: the first day is supposed to be the worst pain, and mine wasn't too bad today, so maybe the rest of the week will be a piece of cake (after mama gets them all in line about what kinds of drugs to give me and when). We'll keep you posted!

Thursday February 7, 2002 1:14 PM CST

A really short entry because I'm such a busy girl, saying, "Playroom, playroom, playroom!"

My PET scan was clear, so that means...COMPLETE REMISSION!!!!!

I have started my GM-SCF shots, and on Sunday my grampa is coming to the big city, and then on Monday, I start the antibody treatment. Wish me luck!

Tuesday February 5, 2002 3:41 PM CST

Surprise! We are in New York. Mama and I flew up today. Mama had to get a bit assertive with them because they actually called Monday and wanted us here Tuesday at 9:30 a.m.!!! The compromise of coming today didn't help out too much, but at least it gave us more time to get ready.

I really enjoyed my plane ride! I played all the way to Atlanta and then slept all the way to NY. Can't ask for a much better traveller than that.

I am having a PET scan tomorrow. Then at long last we will know once and for all (unless these docs figure out something else they want to do) whether and when we are starting this treatment.

Well, I need to go play. We'll update more later!

Saturday February 2, 2002 7:16 AM CST

Not much news, so just a little update. We will probably have to go up to NYC earlier than we thought. I am going to have a PET scan -- very sensitive to unusual changes in the body -- just to get a better idea of whether the spots in my liver and jaw are really taken care of. I will probably start my GM-CSF shots next Wednesday. We are trying to learn to be more spontaneous (since no one can seem to tell us too far in advance when we will go to NY.)

I have been to the park a couple times this week, and I've been playing outside with Emma everyday. I also have a fit everyday. Like right now. I want to play Jump Start Teddy and mama told me to wait so I put myself on the floor and cry and cry and cry. I cry, "I need it! I need to play Teddy!" (or whatever it is at that moment). Then mama ignores me and tries not to laugh at me. I can be quite a serious little stinker. Yesterday, mama noticed I was quiet for quite a while. So she came into the dining room and saw I was taking out all the cloth napkins and carefully laying them out on the floor. She said, "Oh, Lina. I really don't like it when you do that!" And I just stopped and looked at her and said, "I sorry mama. Ina working. I busy." and I went back to work. After I had them all laid out, I wiped off my hands and called, "I finished! Mama come see! I finished!" Mama tried to convince me it would be just as much fun to put the napkins away, but I didn't buy it.

My fit is almost over, oops I guess not. I'll talk more when I'm in a better mood. :-)

Wednesday January 30, 2002 8:21 AM CST

**My mama wants to preface this edition by promising not to use swear words while talking about the NY doctors**

Well, we FINALLY heard back about my bone marrow and MIBG scans. And it's negative!!! (Which is very positive, by the way...) MIBG in particular is good news because it's very sensitive only to neuroblastoma cells. We were particularly worried about the spot by my eye because it was positive before transplant, so this is very good news.

Of course, nothing is easy. The NY doctors can't seem to get their "stuff" together, and keep blaming our JAX staff for not sending info they need (about half of which was FedEx'd and signed for!!!) So, the long and short of it is, we were expecting to start the GM-CSF shots today, but can't start until next week. The NY docs might want to do another sensitive scan -- PET scan -- to get a better idea of the progress (actually we're assuming lack of progress) of the spots in my liver and jaw. Yes, we wondered too why we didn't do this when we were in NY last week. Maybe making things extra difficult is their way of weeding out patients. So now it looks like we would start the antibody treatment Feb. 11.

It has been beautiful here. Almost 80 degrees yesterday. We spent a lot of time outside because our naughty dog ran away. She was making up for lost time after being confined while we were gone. We had to walk around the neighborhood looking for her. And I told anyone who would listen, "Ina call Emma. 'Mere Emma!" and then I imitate mama's whistle. Well, we never found her, but she did sneak back in last night. Today, I might get to go to the park, or maybe go to a carwash. I saw several automatic car washes on our trip, and I think they are the coolest thing. So mama promised we could see one sometime. I enjoy the simple pleasures in life!

Tuesday January 29, 2002 7:26 AM CST

We made it home safe and sound. We stayed and visited with my godfather in South Carolina Saturday night. Mama has decided she needs to get rid of all my toys. At my godfather's house, I played all day Sunday with 6 batteries and a wooden dowel. I was upset that I had to leave them behind too!

Our trip to NY went off without a hitch. Mama and daddy took me on a looooong walk to FAO Schwartz Friday night. And boy, was it worth it! Toys everywhere the eye can see! I got to pick out a Caillou doll and bathroom set (I think they're trying to encourage my toothbrushing skills -- which has suddenly become a BIG fight everyday! I throw a fit, and wiggle and run away with my hand over my mouth, yelling, "It tickles! Boo hoo hoo!") We also saw the horse and carriages by Central Park, walked along Madison Ave. by all the expensive shops, and then got some real NY pizza. I even ate some!

We're hoping to hear some news today from bone marrow and scan last week. We'll let you know.

Friday January 25, 2002 3:45 PM CST

Our final day! I had my MIBG scan today. I was pretty upset because I couldn't eat or drink (really didn't care about the eating, just the drinking...) until after my scan which was at 2:00. I had a pretty hard time getting sedated, but luckily, came out of sedation okay. Sometimes I can be pretty cranky afterwards. And this is my 3rd sedation in 2 weeks, so that was lucky that I wasn't a stinker today.

They have all kinds of fun activities here at the Ronald McDonald House. Last night they took people to Rockefeller Center to skate and have dinner: filet mignon and salmon. We didn't go because a friend of daddy's was coming to see us. But I did get to do a fun art project last night with paint and feathers and lots of felt shapes. I decorated a big, funny hat. Tonight there is a bowling trip. It filled up fast, so we're on a waiting list. I've never been bowling before, but it sure sounds fun!

We are planning to drive home tomorrow. We're hoping to make it to South Carolina where we'll spend the night at my godfather's house. Then we'll be home Sunday. Next week, we'll hear results of the bone marrow and MIBG scan. And also find out if we're eligible for the study here. We're not crazy about the facility or space (mama says, picture a refugee camp with lots of IV poles around, and you've got a good idea of what the hospital looks like), but it sure sounds like the place to be for treatment.

See you back in FLA in a few days!

Thursday January 24, 2002 3:28 PM CST

We made it through another day. I had my bone marrow today. But much, much worse than that...I had to wear a pee-pee bag all day. That is such a drag. This hospital must be modelled after Dante's vision of hell. There must be lots and lots of waiting in hell. Anyway, I am feeling good, even though I missed my nap again today. I asked to go to the park today -- I saw one while we were waiting (what else?) to get my MIBG injection. I was very good during our waits, so mama and daddy said we could go there when we got done. But then it was raining a little bit, so that didn't work out.

Tomorrow I have my MIBG scan, and then we're all done. We haven't heard very good things about actually receiving the treatment (sounds pretty painful...), but we have heard lots and lots of good things about being on this treatment. We've met 2 other little girls diagnosed 2 and 3 years ago, who are in complete remission, and almost done with antibody treatment. So that makes everything worthwhile.

Maybe FAO Schwartz tomorrow...I'll let you know!

Wednesday January 23, 2002 4:23 PM CST

It's official: I REALLY am the best girl in the whole wide world...it's not just what mama and daddy call me! We made it to New York, and I was soooooo good! I got to watch movies in the car, so I was happy. And I love staying in hotels! It's so much fun to lay in bed and watch TV (doesn't it sound like I'm a couch potato?)

We visited with our new doctors and nurses at the clinic today. This clinic sure isn't as good as back home. There's an awful lot of people and not too much space. Plus I had to keep fighting another 2 year old for the kitchen stuff in the playroom. Tomorrow I have a bone marrow biopsy, and then Friday my MIBG scan.

The Ronald McDonald House is very nice, like a hotel except the rooms are bigger. They have a playroom, a computer room, a dining room with a kitchen for us, and lots of stuff going on, but we probably won't be able to do any of it this time because we're booked solid.

Mama and daddy promised to take me to see FAO Schwartz toy store, but otherwise they're pretty much party-poopers. They tried to make me take a nap (I'm back to my old crazy, non-sleeping self!) and they were pretty upset that I wouldn't let them sleep. But I said, "C'mon, we're in the Big Apple...let's go explore!" And they finally gave in. They're only letting me explore the Ronald McDonald House so far, but I think I'm gonna wear them down and get them outside pretty soon.

We'll let you know more later!

Friday January 18, 2002 6:31 PM CST

I've finished all my scans this week. The CT is clear, the bone scan shows some suspicious areas in my face that could be just scar tissue. My MIBG scan next week will show what's really going on. MIBG is a radioactive solution that is only picked up by neuroblastoma cells. So anything that lights up on the scan is neuroblastoma tissue. We also met with the radiation oncologist today and feel a lot more comfortable with the radiation I'll be getting in the next couple of months. They don't get a whole lot of kids over there at the cancer center -- mostly adults -- so they were all really interested in meeting me. The nurses even gave me a stuffed Barney! And the doctor had all kinds of neat suprises in her pockets that she let me play with.

Tomorrow my friend Sophia is coming over to play with me. She is just 4 months older than I am. I always laugh at her hair because it's so long and curly. Then I say, "Ina's hair all done!!"

Tuesday we will leave for NY. We are going to drive, so wish us luck, and mama says, wish for me to be very tired!!

Well the first leg of our NY trip is scheduled. We will go next Tuesday and have some tests and scans, then come home Friday, and start the "pre" treatment (a shot similar to my good ole Neupogen). Then, if all the scans are good, back to NY for the official treatment beginning Feb. 4. Of course, this gave mama an excuse to browse eBay looking for a winter coat for me (and yes, she got a great deal!)

I had an echo and CT today. The echo was a breeze. CT is always another story entirely. They make me drink some nasty stuff -- which of course I drink because they make me go sooooo long without fluids before -- and it tastes so bad, today I threw up a little bit. (Mama accidentally drank some of it once, and she says it's a little like trying to drink shots the morning after a heavy night of drinking. If that helps describe it at all.) Then I have to take a really nasty tasting medicine to go to sleep (the gag factor just keeps going up - just a little throw up there). I stayed sedated the whole time -- touch and go there for awhile when I was stirring on the table -- but it just makes me so cranky and irritable. Mama tried talking Emma and I for a walk to get some fresh air and get that stuff out of my system. I was not a pleasant girl. She wasn't sure who needed a whuppin' more -- the dog or me!

Two more big days this week - bone scan Thursday and a meeting with the radiation oncologist Friday. So more news later!

Thursday, January 10, 2002 at 07:21 AM (CST)

We are very excited about going to NY. Mama put a link to the Sloan-Kettering site about the treatment I would be getting. It's at the bottom of the page. We aren't sure how our Florida bodies will handle New York weather! Daddy is hoping to get a laptop and telecommuting priveleges so he can go with us, but work while we're there.

We have had some cold weather -- we actually had frost on the windshield that mama had to use this funny little scraper thing to get off -- but yesterday was really nice. So mama and I went to the park. I had the most fun!! But I most have worn myself out, because when daddy came home and mama said, "Tell daddy what we did today," I just had a melt-down! I cried and cried and turned in circles and said, "Park, Park, Park, Park" over and over, and finally just laid down on the floor and cried. I finally stopped when daddy picked me up and told me maybe we could go again tomorrow. So of course the first thing I said today when mama woke up was: Park! Park! We'll probably go later this afternoon. Unless I really wear mama down....

Tuesday, January 08, 2002 at 11:22 AM (CST)

I had another great day at the clinic -- except that mama and daddy had to ask so many questions and keep me there so long!! -- but no blood products, and everything is looking good!

Mama and daddy had lots of questions about a study in New York at Sloan-Kettering. It is a shot that has some promising results with neuroblastoma. We would go to NY for 2 weeks/ then home for 3 weeks - four different times, then start going every 8 weeks (2 weeks in NY - 6 weeks at home, etc). We would stay at the Ronald McDonald House there. So anyone going through Mickey D's drive-through: throw your extra change in their little collection box! So far, it looks like we'll be participating in this study. There are still a few things to iron out.

Fortunately (and sometimes unfortunately) I have been just acting like any normal 2 year old. I enjoy running everywhere nowadays. I say, "Ina running!" and take off wherever my heart desires. I got in BIG TROUBLE yesterday for playing in the potty. Mama went to put some laundry in the washer, and I took that opportunity to splash in the big bowl. Boy, did I get yelled at! Scared the bejesus out of me! And that hasn't had a real positive effect on my potty training. Because now, every time I go near the potty I say, "No No, Ina! Don't play in the potty!"

We'll keep y'all updated on our plans in the next few days.

Saturday, January 05, 2002 at 10:13 AM (CST)

Hello everyone! We're experiencing some "dangerously cold" conditions here in JAX. It was 34 degrees when we woke up this morning. It is funny to see the news at night when it might reach freezing here. Because these temps are so NOT newsworthy up north!!

I was able to go outside to play and take Emma for a walk yesterday. Even though I kept saying, "Windy day!" I enjoyed myself. We got some exciting news: we will probably be going to Sloan-Kettering in New York for an experimental treatment sometime in the very near future. We will find out more when we go to the clinic on Tuesday. It sounds like I will have some scans (CT and echocardiogram) here next week and then maybe go to NY soon after for more scans and then -- hopefully -- the treatment.

Echos have made a big impression on me. Anytime we're at the hospital and we walk by the wing where they do them, I say, "Soap on heart" (they put some gel on my chest and then do a kind of ultrasound over my heart -- mama told me it was soap). And I like to have mama lay down on the floor, and I take my cash register with the scanner and put it over her heart and push the cash register keys to make some noise and give her an echo.

More news next week!

Monday, December 31, 2001 at 12:36 PM (CST)

Yeay! Another great clinic visit! No blood products and I get to drop back to twice a week Neupogen! And mama is happy about once a week clinic visits (instead of twice) -- we get to do our own blood draws at home which is definitely faster than going to the clinic!

We are looking into an investigational drug, kind of like a vaccine against neuroblastoma. We might have to go to New York to get it, but mama and daddy said, "whatever it takes to get it, we'll do it!"

I have been playing outside with Emma, going for walks, and the other night we went to visit our friends Kirk and Ju-Ju and baby Jack. I even got to hold him. But then he started crying, so I gave him back to his mama. He had lots of colorful toys though, and I enjoyed showing them to Jack.

Everyone have a safe and happy New Year!

Friday, December 28, 2001 at 02:24 PM (CST)

We had our first clinic visit today, and guess who didn't need any blood products?? I will go to the clinic again on Monday and may need platelets then, but that's okay. I also get to drop back to Neopogen every other day, not as good as never, but better than every day!

I also grew 2 cm, which mama already knew, because before transplant, I couldn't turn the door knobs to open the doors, and now I can open every door in the house. So much for keeping me corralled in certain rooms!

Thursday, December 27, 2001 at 08:41 AM (CST)

Oh it's so good to be home! I have been playing and watching my new favorite movie, "Spot's Magical Christmas" and just enjoying being home. I like to have all the Christmas lights on all day. And we've had a fire so far every day I've been home, which is very cozy.

Yesterday for mama's birthday, I gave her a very special present....I slept in with her until 10:00!! I usually get up everyday at about 7:15 like clockwork. But yesterday, I woke up at 6 a.m. ready to go! Mama and daddy convinced me it was still dark out so I should sleep a little more. I asked for a 'nana, ate it -- falling asleep between bites -- and then slept til 10! Mama was very glad! We needed the rest.

I go to the clinic for my first check up tomorrow. Hopefully I'll be able to drop back on the Neupogen shots a little bit. I have to have them every day which is no fun. I'll let y'all know how I make out at the clinic/"tintink."

Tuesday, December 25, 2001 at 02:02 PM (CST)

Ho Ho Ho, Merry Christmas! I got the best Christmas present yesterday...I got to come home!! It is so nice to finally be home. I don't know who was more excited, me or mama and daddy.

I was very excited for Santa this morning. I kept saying, "Happenned? Happenned?" because the cookies and carrots we left out for Santa and the reindeer were gone when we woke up this morning. I said, "Santa cookie in mouth." So I think that's what happenned. Then Santa called me this morning, too. And I asked him if he put the cookie in his mouth. It is cold enough here today that we had a fire in the fireplace. I really enjoyed that because I've never seen it before. If mama and daddy aren't careful, they could have a real pyromaniac on their hands.

Boy, have we been sleeping good since we got home. I slept all night long, and mama and I took a 2 hour nap today. Nothing like sleeping in your own bed. Merry Christmas to everyone!

Sunday, December 23, 2001 at 01:43 PM (CST)

I am officially engrafted! Today my ANC is 2534!! So I get to go home tomorrow! Today they unhooked me from all my lines to give me a chance to eat and drink on my own. I got to go for a choo-choo outside my room. Then I took a nice long nap. I enjoy playing on mama and daddy's bed just as much as being outside the room. My lines usually don't stretch that far so it's really special to get to play on their bed!

The doctors told mama and daddy to start packing first thing in the morning because all they have to do is write the discharge orders. So I will be home in plenty of time to get ready for Santa.

Mama and daddy have been deciding what to eat for Christmas dinner. Daddy said roast, mama said pizza. Daddy said, "What's pizza have to do with Christmas?" and mama said, "Put some green peppers on your pizza and it'll be Christmas colors!" Daddy was so impressed with this argument that, in the end, mama won (which is how it should be...) and we are each going to make our own individual pizza tomorrow night. I like pizza, especially with black olives, so maybe I'll eat some.

Please add my hospital neighbor to your prayer/energy list. His name is Dixon and he's 2. He came into the hospital when I started my first transplant, and he is still there. Remember how long ago that was? His first transplant didn't engraft, so they gave him a second. We are hoping this one works. I can't imagine how much energy he must have when he's feeling good!! He fights his nurses every single time they give him medicine or a bath. He calls them "caca" when he gets too frustrated. They think I'm pretty easy, because my worst thing is saying, "I'm tired!" and laying down on my stomach to fake like I'm sleeping when I want to avoid something.

A "Ho Ho Ho" and very merry Christmas to everyone. Hope Santa finds you all!

Friday, December 21, 2001 at 06:27 PM (CST)

Yippee! I have an ANC today! It's officially 149 -- but should jump big time over the next couple of days. And today the pharmacy delivered all my meds to take home!! So it looks like I'll be home for Santa for sure. We'll probably be released Monday.

I had a little fever Wed. night, but nothing since then so everything looks good. Of course, it's always something!! Today one of my lines blew out. So tomorrow morning the surgeon will come to my room and just yank that sucker out. Since I won't be needing it anymore anyway. Then I'll be back to just one buddy again. Mama is just thrilled about the prospect of having this surgeon do the job. (He has a wonderful bedside manner -- NOT!) She is so grouchy, so might just kick his a** if he acts up!! I'm going to get a little of that good ole morphine before the procedure so I probably won't be complaining too much.

I ate a hotdog and drank some milk today! So hopefully I will get to go home without TPN (I think the prospects are good!) They decreased my TPN today anyway so they're weaning me off.

Mama and daddy are getting everything ready for me to come home. It's not as much of a production this time. We don't even have to have a home inspection. But they're getting into all the nooks and crannies anyway.

I hope everybody is settling in for a nice holiday with family and friends!

Wednesday, December 19, 2001 at 04:45 PM (CST)

We got some good news today: I have a white cell count! Yeay! It's only .18 and should be 6 or higher, but it's definitely going up! And the doctor said he hopes to send us home this weekend! He said, "You have a big "Lina Rak lobby" out there" (meaning the nurses) "who said I need to send you home for Santa, or else." And that Dr. Joyce is usually pretty conservative so we hope he's right.

More good news is I seem to be learning some good habits. Today I spent a long time pretending I was cleaning. I said, "Spray spray spray" (got that from seeing mama and daddy always spraying everything in the room with alcohol!) and then told mama, "Put the baby over face, mama" and took my play fork and used it as a broom. (Our daily schedule is, the cleaning lady comes in when I wake up, and when she goes to sweep, I have to put my baby over my face so I don't breathe in any junk.) I swept and cleaned things with a rag, and washed dishes. How's that for fun fantasy play!

I am feeling much better. Today I didn't have any pain medication at all. And I played on the floor with my Legos and also made a beautiful sparkly Christmas tree with Susan.

My daddy is on vacation now until the end of the year. And boy is mama ever glad! She told daddy, "I am sick of this room, sick of the hallway, sick of the parking garage, sick of the road we drive on to get here..." Basically she's sick of staying here!! So my plan is to get done with this transplant, and then never have to stay in the hospital again!! Sounds good, huh?

Hopefully tomorrow I will have not only white cells, but an ANC too. It has to be above 500 for two days before I can go home.

Saturday, December 15, 2001 at 02:21 PM (CST)

Well, I finally had to give in and get a fever. I fought it all day yesterday and last night, but today they started me on prophalactic antiboitics and did blood cultures and all that good stuff. The good news is, it's so routine to get a fever at this point, that the doctors didn't order any urine cultures or throat cultures yet. They're pretty sure the fever is just because my counts are so low. Boy did I fight it last night though! I made mama sleep with me, and she was just sweating having to be so close to me! Plus my heart rate was between 165 - 180 all night (mama remembers a fitness instructor in college telling her 180 was too high for a peak aerobic workout heart rate!!) -- so you can imagine with all that hard work, I wasn't too rested this morning. But once they ran the cultures, I got some Tylenol and started feeling better.

Gramma left on an airplane this morning, even though I tried to convince her to stay. She and mama escaped for a while last night and went out for pizza (Grampa and Daddy made them go). Mama told Gramma she was acting like an Iowa tourist because in one of the most expensive shopping districts in town, Gramma wandered through the stores yelling, "Oh, look at this!! These are really "in" now!" as if she hadn't been shopping before.

Daddy is hanging out with me today, which is pretty much all I'm doing -- just chillin' and watching some movies -- while Grampa and mama are home doing some Christmas decorating. Mama says I will love all the lights when I get home. The jury is out on whether the wrapped presents under the tree will stay that way until Christmas (and for anyone who knows my mama, it's not just the 2 year old we have to worry about getting into the presents...)

Please pray for a short course of mouth sores, and a quick jump in my counts!

Thursday, December 13, 2001 at 07:45 PM (CST)

Wow! It's a good thing I'm two, and I'm supposed to think I'm the most important person in the whole world, because all the presents and messages I got today sure make me think that! Thank you!

I had a wonderful day! And I felt great too. I had a restless and fussy night, tossing and turning, and crying, and saying, "Ina sick." But when I woke up, I was all better. And then to find out it was my birthday and get all kinds of prizes, well, what more could a little girl ask for? I have gotten so much to keep me busy, my room is getting crowded!

We had cupcakes tonight, and even though I didn't eat any, I did get to blow out the candles twice! I love to blow out the candles. Maybe I'll get extra wishes, or get my wishes extra fast!

My counts are at zero today so this is the worst time for me. Sometime over the next few days the doctors say to expect fevers, mouth sores, sore bottoms and all that yucky stuff.

Grampa and Gramma can't believe how much I talk (even though Grampa still needs a translator -- he's not quite used to my language yet.) I spent yesterday sniffing, and saying, "Hmmm. It smells like corn." Today I asked mama to "turn off the sunshine" before my nap. And a story from the "so-sad-it's-funny" files: my favorite commercial is the Procrit drug one, where the grampa is going shopping for a big boy bed with his grandson, but he's very fatigued from chemo. I stop and watch it and say, "Ina chemo, too!"

Tonight is Daddy's turn at the hospital. Mama whispered me a special message before she left to say, "Daddy, c'mere sit!" as much as I said it to mama last night. We'll have to see how well I followed directions....

Tuesday, December 11, 2001 at 09:07 PM (CST)

How many people are lucky enough to have 3 birthdays in a 2 month span? I had my second stem cell transplant today, just 2 days before my REAL birthday! So we didn't have anything special for this one, because mama is afraid I'll be too confused...a birthday party 10 days ago, then a real birthday...it's a lot for a little mind to handle.

I started on TPN and lipids today because I've never really eaten very well since last time. But I did have some pizza tonight for supper. Luckily I have a loving family, because I am almost too stinky to be around. I'm even sniffing and saying, "Oooh, stinky!!" Mama wonders if we'll ever be able to eat creamed corn again! (That's kind of what it smells like.)

Otherwise, I'm doing great. Aside from playing "Sick Baby" -- where I have my baby throw up in the puke bucket -- I seem to be feeling fine. It upsets me when people think I'm sick and put the bucket near me. I cry, "No bucket! No bucket!"

I have a new friend here at the hospital. Her name is Sabra and she has neuroblastoma too. Plus, you won't believe it...her birthday is the day after mine and she's going to be 2, too! The other day we practiced sharing. I gave her a package of Teddy Grahams (actually my mama gave them to her, and I said, "No! Ina's Teddies!") Then yesterday she gave me a package of candy. I have been talking about it all day today. "Zebra gave prize. No Ina's Teddies!" Then gramma and mama have to reassure me, "Yes you shared and that sure was nice."

Today my counts were nearing zero, so now we're in for the long wait for counts to climb again. Unfortunately, my birthday (Thursday) should be the lowest point, if things are anything like last time.

My grampa came today. I was so excited for him to come, I got right around to bossing him around. And I wouldn't let anyone else change my diaper, which I'm sure thrilled him. Now I will have more people to choose from to boss around. When I'm feeling frustrated or yucky, I tell people, "Move!" and get quite insistent.

I have gotten some wonderful things in the mail, from friends, from Santas and elves at the hospital. Tonight I got the coolest monkey with a light up tummy from friends from Daddy's work. I was playing with it in the dark when mama, grampa, and gramma left.

Mama says all the messages left today just make her heart hurt, but in a good way. I'll just say, "Thanks. That's nice."

Saturday, December 08, 2001 at 11:28 AM (CST)

Well, things have been very uneventful -- which is good! I have one more day of chemo, then a day off, and then my transplant on Tuesday.

People keep asking me what I want for my birthday next week, and I just don't have anything to say! I get a 'prise everyday when I'm in transplant, so I have almost every toy known to humankind! Yesterday I got a cool piano mat that you step on to play music from Aunt Mimi and Jon and the babies. Today I got a Bob the Builder play set, and is it ever fun! Mama and Daddy even had a lot of fun playing with it! So my birthday will be fun, but mama wonders if I really need any presents (but you know I'll get a couple!)

We have gotten some fun pictures and messages about your favorite things about Christmas. I enjoy looking at my Happy Book that we made from my mural. We are going to put the Christmas pictures on the wall, and then make them into a special Christmas book later.

My Grampa is coming Tuesday. He has never been in the hospital with me before, so I'll have to show him the ropes. I have a St. Benedict medal my Grampa carried in Vietnam. I call it my "ah-mee" (money) and it's hanging above my bed. So far, it's working well, thanks, grampa.

Everybody give a hug to someone today, and tell them it's from me!

Saturday, December 08, 2001 at 11:28 AM (CST)

Thursday, December 06, 2001 at 06:45 PM (CST)

So far, so good, as They say. I have finished my first 3 days of chemo with smooth sailing. I didn't even have too much trouble with my 3 A.M. baths (although there's always tonight, but mama says, luckily it's Daddy who has to deal with it!) I have 4 more days of chemo -- and the main problem with this drug is they flood me with fluids to protect my bladder, and I just pee, pee, pee all the time. So the nurses have to come in every hour at night to change me. So I just don't sleep real well.

I'm back to my old non-sleeping self at the hospital. I just play and play all day long. Luckily I got all my new b-day toys to play with. I also spend a lot of time playing tent. Today I got the doctor to play tent with me for awhile, too. I also painted the window with Susan. I was VERY into the whole window painting thing. I took my art very seriously...sucked in my cheeks and went to work. Never looked up once in the whole half hour we painted.

I am being a real stinker about tooth brushing though. Four times a day and a fight every time. Mama threatened two different times today to take away all my movies. Once she actually had to take them out and put them in the hall before I would open my mouth. Maybe we should ask for prayers for easier tooth brushing?

Mama heard our pictures aren't working so she's going to see if she can fix that.

Tuesday, December 04, 2001 at 07:38 PM (CST)

I hope everybody checks out my photo album to see what a great time I had with the clown! I don't know what was more fun -- the kids or the clown! She did lots of fun tricks, and I spent lots of time giving "biiig hugs!" to the kids. Then we had cake and ice cream and I got to open my presents, which consisted of all my favorite things: Bob the Builder, Blue's Clues, Mr. Potato Head, pretend food, and more fun stuff. It was soooo fun! Thanks Patti-Cake!!

Monday I went into the hospital for transplant#2. My room has a big sign on it that says, "Lina's Room" and I fussed and fussed because I wanted to go into "Ina's Room" right away (but you know, "door stuck!" so I couldn't get in right away!) The nurses had to bathe me special and mama had to get my things all unpacked and disinfected before I could get in there. By the way, Aunt Mimi, mama ruined my Richard Scarry "kitty book" -- my favorite book in the whole world -- with alcohol. But luckily, I can still look at the page with the grocery store. So...if you haven't gotten my a Christmas present yet....(hint, hint).

I started chemo today, and I have to have a bath every 6 hours to keep from getting burns on my skin. My first one was lots of fun. But I'm sure my 3 A.M. bath won't be so much fun.

I was a bit of a Stinker today. I just didn't want to take a nap all day long. When I finally went to sleep, mama slipped out to go visit our friends Kirk and Ju-Ju who just had a baby boy today. Boy was I mad when I woke up and she wasn't there. Gramma had to call mama to come back and "hodju, mama!" (I think "hold you" is all one word!)Boy, was I ever crying and crying.

So far, I've been in the hospital two days, and I've seen Santa twice! And do those hospital Santas ever bring nice presents!! Today I got a baby in a backpack with all kinds of neat baby stuff. Yesterday I got a Beanie Baby bear.

We need to decorate our walls everybody! I'd love to see a 100 word essay on "Living the Meaning of Christmas" (just kidding, unless you're really an over-achiever!) But how about your favorite thing about Christmas (favorite image, favorite food, favorite tradition, any kind of "favorite"). If you can't send a picture, just send my mama an e-mail message and we can draw on it in my room.

Thanks everybody! My favorite holiday image so far is snowmen because my great-aunt Judy sent me a book about them, and they're "brrr...cold!" and live where my grampa is.

Tuesday, November 27, 2001 at 10:43 AM (CST)

My mama is speechless! I've made it through my whole post-transplant period with only one transfusion!! I didn't need any blood today, and they're pretty sure I'm not going to need any Neupogen either! So I'm all set for transplant #2. We go in next Monday. I'm not quite sure what to think about that, but I'll have lots of entertainment. Mama has been collecting ideas for a month now, plus my Gramma will be here, and my daddy is taking off almost a whole month from work. So I will never be bored. All this, and I'll get to play with "Toonan" (Susan) again. Everytime I use glue here at home, it makes me miss her, and I say, "Toonan!"

We had lots of company for Thanksgiving. I never let anybody sit down (except for mama and daddy -- I didn't need to play with them!) I had lots and lots of fun.

I have been helping mama wrap Christmas presents. But then I don't understand why I can't UNwrap them! I cry and say, "Mine! Ina's!" but it doesn't seem to make any difference. I have had fun coloring and putting stickers on some packages though.

On Sunday, mama's friend Patti-Cake has arranged to have a clown come over for a little pre-birthday party for me. I've told mama we have to have hats, cake and candles. We will post some pictures of it here on the website.

Hugs and "kees" to all!

Tuesday, November 20, 2001 at 12:08 PM (CST)

My streak remains strong! I went to the clinic today and didn't need any transfusions! As a matter of fact, my platelets are 104, 000 (thank you very much!) and my hemoglobin is steady. I also get to go to just one Neupogen shot/week and the doctor said maybe this week will be my last one!

Of course that means that we're getting closer and closer to the next transplant, but that means we're that much closer to being done.

I am practicing telling people I am going to be 2. I can't quite spit out WHEN I'll be two, but when I hear the word "December" I say, "Two!" I'm watching lots of "Blue's Birthday" & "Barney's Birthday" to help me understand what this birthday business is all about.

Everyone have a safe and grateful Thanksgiving. We will be counting all our site visitors and well-wishes among our blessings!

Friday, November 16, 2001 at 10:57 AM (CST)

HOO-Ray for me! Another short clinic visit today! I didn't need any transfusions!! My platelets have actually gone up (they've usually been pretty stubborn about getting back to normal). My hemoglobin was a little lower, but still having tough at 10 (the low end of normal).

I have a new favorite "juice." I'm a little low on protein so mama and I make smoothies in the blender and add all kinds of things. My favorite is berries. Mama tried to sneak some peanut butter in last night and I wasn't too crazy about that. But I get to press the buttons, first a white one, then the red one.

Mama and I made turkeys yesterday from my handprint. Then I got to glue feathers, a hat, and a gobble-gobble (that little red thing on their chin) on each one. We are having our friends, Kirk and Ju-Ju, over for Thanksgiving (if they don't have their baby first!). And my godfather might come too. Mama has told me about the parade with the big balloons and marching bands. I'm sure I'll love to see it.

Mama and I made some musical shakers yesterday out of old plastic containers. They have different things inside to make music when you shake them. I like to march around making music, and yell, "March, march!"

We go back to the clinic (only once a week from now on) next Tuesday. Hopefully we'll keep up this pattern we've been seeing lately!

Tuesday, November 13, 2001 at 11:38 AM (CST)

Another clinic visit, and another day without any transfusions! I get to drop back to just one clinic visit per week, and possibly only one Neupogen shot per week. Ya gotta love that!

My Grampa left on an airplane yesterday. I like the picture you drew for me, thanks, Grampa. But it didn't help me think you were gone. I kept saying, "Bampa outside." See, mama made Grampa do lots and lots of work outside, but the yard sure does look nice now. I also got a little upset when mama sat in Grampa's chair at the table! I said, "No, no, mama. Bampa's chair." Today in my room at the clinic I had to go over and sit where Grampa sat the last couple of times, and say, "Ina in Bampa's chair!"

I'm hoping Gramma will come for a visit pretty soon. Mama could put her to work too.

We'll write more good news Friday after our clinic visit.

Friday, November 09, 2001 at 12:38 PM (CST)

Hi everybody!!

Another great day at the clinic! No transfusions! And my ANC is great with only one Neupogen shot so far this week.

We heard I may go in for next transplant Dec. 3. Boy, that seems like it's right around the corner, but it also means I would hopefully be out in time for Christmas (and Santa, which I'm very intrigued with right now!!) at my own house.

We just had some landscaping rock delivered to our house, and I got to see a dump truck up close! Right in our driveway. I keep saying, "Trut. Dump. Dirt." Very exciting.

Hope to write with more good news next week!

Tuesday, November 06, 2001 at 01:31 PM (CST)

I just got back from the clinic, and I have to brag a little: I didn't need any transfusions today!! I'm doing fine all on my own. I also get to have fewer Neupogen shots (yeay!!). Only twice a week now. My nurse said somebody must have forgotten to tell me I was supposed to be sick. So far the word is about 6-7 more weeks before the next transplant.

Just one Stinker story: my mama tried to go out yesterday afternoon while I was sleeping, and I woke up when she was gone. Grampa just didn't cut it! I cried and cried for mama -- "Mama! 'Ere aw you?" (where are you in my language...) And Grampa tried to console me, but failed. Finally I said, "Tired, Bampa." and he took me back to bed. I laid right down and said, "Cover, Bampa." So he covered me up and tried to sit next to me. But that upset me, and I said, "Go Grampa!" Well, I guess that hurt Grampa's feelings, so when I woke up and mama was home and I was feeling better I said, "I sorry Bampa."

Everybody take care of yourselves and your loved ones. We heard that Iowa is having some nice Indian summer days. We just want to say, that's the weather most everyday here in Freakville. (Not to rub it in or anything.)

Sunday, November 04, 2001 at 12:21 PM (CST)

Hi everybody!

I'm feeling great! A little tired yesterday, but I guess that's to be expected. I say, "Tired, mama," and then we get to go snuggle in my bed. Now when I see people yawn, I wonder if they're tired too. Today I asked Grampa, "Tired, Bampa?" But he said no, he was just stretching.

I was kind of a whiny-butt yesterday. Probably because I got up so early (6:00 a.m.!) and was so tired. Mama and daddy were a little concerned though. Especially when I kept saying, "I sick" and making coughing/throw-up noises. But now they've discovered I do that just to fake them out and tease everybody. Especially if I see one of the puke buckets around.

It sure is good to be home. Today Grampa, mama and I are going to work on my Happy Book. We're taking all the things from my happy mural and putting them in a special book. Later I'm going to make Jigglers. The jury is still out on whether I'll eat them. But I sure am drinking a lot of juice. Mama even let me feed the juicing machine last night. That sure was fun. And I drank all of it! And tasted each fruit and veggie before I put them in!

"Kees" and hugs to everyone.

Friday, November 02, 2001 at 03:13 PM (CST)

Hello everyone,

I went to the clinic today and got some platelets. I got to do some "marble painting" with Miss Jolie (you put marbles in some paint and then let them roll around on the paper in a box...moms like it because no mess!!) She also let me play with her special stash of toys. It sure was good to see my clinic nurse, Kristin, again -- and without a mask!

I had to wear my mask until I got into my own little room. I did a good job though. And mama kind of likes the VIP treatment. We don't have to wait in line or anything!

My grampa got here last night and was I ever excited! I showed him to his room right away and got out all the special (that is, small, messy, with lots of pieces) toys that mama said I had to save until Grampa was here. He brought some special posters for my Happy Mural that he and Gramma made. I really liked Gramma's poster, especially the teeny-tiny picture of Blue's Clues where Steve was waving out of the house.

Grampa is gone to the store to get me some special snacks. I said, "Nanas! Turkey!" I was a little upset that I couldn't go with him. I really like to get a cookie from the bakery. I always say, "Thanks. Nice." But mama said not this time (actually not for a long time, but she can have all the Oreos she wants!!)

Well, I'm off to watch Kipper. Thanks for all the positive energy. The doctors said that's why I've done so well so far...because I have such a great spirit.

P.S. Mama says GO BIG RED to those cheerleading gals.

Thursday, November 01, 2001 at 06:07 AM (CST)

A message from Lina: dddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddd

Now she had to run off to eat her Teddy Grahams and watch Pooh. She's already back into her normal routine!!

She loved having the trick or treaters last night. Especially the babies. She didn't want to wear her whole costume the whole time, but she did very well putting on her mask whenever kids came to the door.

So far, she's been sleeping great (it's nice to have actual silence when you're sleeping!!), drinking well, and even having a few little snacks. She's also been in every room of the house, and played with all her toys!

Grampa is coming today, and we're really looking forward to that. He said mama can take loooong naps while he's here! So far the only thing on our schedule is to go to the clinic on Friday -- we're probably going to need some platelets. But that's okay, Lina's missed her clinic friends, and as long as we don't have any hospital stays (pray for no fevers!!) we're happy as can be!

Wednesday, October 31, 2001 at 12:27 PM (CST)

Two sweet words: I'm home!!

Tonight is Halloween, and I'm going to be a doctor. I'll just help hand out candy, and I have to wear my mask, so we thought I'd just make a whole costume out of it.

Please keep checking in and leaving messages. We have lots of fun reading them!!

Tuesday, October 30, 2001 at 10:54 PM (CST)

Today I shot up to an ANC of 1682, so nobody has to wear masks anymore! Boy was I excited when I finally got to see everyone's faces again. And mama was very excited to give me real kisses all over!

I even got unhooked from all my lines today, and got to run around the room with just shoes on....no sheets on the floor! I was a crazy woman! I wore myself out. Daddy is staying with me tonight (because mama just has to micro-manange and clean everything herself) and I was pooped out and asleep by 8:30. I think that's a record during this hospital stay.

So tomorrow I get to come home!! The doctors will decide by noon if I still need TPN (iv nutrition), but I can do that at home during the night. Mama hopes I will forget about asking for my new friend, a student nurse who played with me a lot yesterday. My nurse Dana asked me if I wanted him to poke his face in the room, so I ended up calling him "Face" all day yesterday and today....It was "Face, kitchen! Face, where are you?" He just played the best kitchen. Even better than mama. But we could play alot better if we had a homemade oven mitt (get busy Gramma!)

I can't wait to come home and watch the new house going up behind ours. There will also be lots of trucks to watch out the front window (especially dump trucks, my favorite!) since they're building another new house on our street.

Well, I will type a little message tomorrow. Mama is making a book out of all my happy things (it would take over my room if we put it up). So you can keep sending them so I have more to look at during my next transplant.

Monday, October 29, 2001 at 10:50 AM (CST)

I'm just full of surprises! Yesterday my ANC was 92 and today it's 691!! If it stays above 500 tomorrow, that means my new cells have officially "engrafted" and I get to work on going home!! YEAY!!

There are a couple other things that need to happen like eating/drinking a bit more, taking all my meds by mouth, and keeping all the fevers away, but I'm sure I can do it!

I've just been playing and being myself for the past 2 days, so mama and daddy are happy about that. I'm even enjoying my baths again. After a week of whining, "No Bath!" every time I saw a towel, I'm back to complaining when I have to get OUT of the tub!

My Grampa is coming Thursday to see me. We have a lot of fun together. I hope he brings me a homemade oven mitt from Gramma. I really need one to open the oven on my little kitchen (get busy Gramma).

Well, mama needs to go do some heavy-duty cleaning. The house has to be spic-n-span before I can go home. Hopefully I'll be able to type a little message next time you visit the website.

Sunday, October 28, 2001 at 08:12 AM (CST)

Well my counts may have gone back down, but I'm definitely feeling better! I'm still on TPN and lipids, but yesterday I ate the most I've had since my first few days. I ate some popsicle, ice cream, Goldfish, and a bread roll. I still have some nausea because I keep telling mama and daddy, "Hotdog" and then making coughing/throw-up sounds. I also got some cool collages from my Gramma's friend, Susan, and one of them was of food and I made the same noise (I really liked the one with the Santas and flowers though!)

My chest is almost all healed up from the Betadine burns, and my bottom is looking alot better (I had to have a pee-pee bag one of my first days, and when they took it off, it took some skin with it...ouch!)

Yesterday was my day to be with Daddy, and we played and played all day. I didn't cry for mama once. Even when mama said bye-bye, I just said, "Home, walk Emma." I must miss home because mama brought me some string cheese the other day, and I smiled and sighed, "home!"

Hopefully my ANC will have a big jump, I'll stay fever-free, and home we'll go in just a few days! I need lots of positive energy to bump me up to 500!

Saturday, October 27, 2001 at 10:55 AM (CDT)

It's 8 days after transplant, and I'm back down to zero. Bummer, I may not break the release record. But counts can jump around a lot at first, so who knows?

The good news is: no fevers and I have bands today (that's little, teeny-tiny, baby white cells). So that new marrow is doing something in there. And my mouth sores are really healing up. I also ate a couple bites of ice cream yesterday, and today I licked on some popsicles for quite a while.

Yesterday, my friends Kirk and Ju-Ju came and brought me a whole bunch of Halloween 'prises. (surprises) I make everyone try on my goofy glasses and then do I ever laugh and laugh! I have a jack-o'-lantern light and a spider web that lights up. It looks cool in the dark.

I had a great time with the music therapist yesterday too. She played the guitar while me, mama, and Ju-Ju played many assorted accompanying instruments. I love to sing, especially Twinkle, Twinkle and the Barney song. I was just a little upset when she had to leave, and took the instruments with her!!

I still have my Stinker moments. Especially during tooth-brushing time. I just fall out all over the place trying to avoid that stinging mouthwash. Mama has to resort to lots of bribery and threats. One of my nurses said, "That shows you CAN reason with a 2 year old." because I was having a fit and mama said, "Okay then, no more Teletubbies," and shut off the T.V. I straightened right up and opened up my mouth wide. (And yes, I got my Teletubbies back!!)

Everyone is just impressed with my progress. Mama and daddy asked one of the doctors if they're sure the chemo worked because I just haven't been sick enough. He said, "Don't be silly." Then he told another one of my doctors and she said, "Yeah, that sounds like them." Apparently mama and daddy have a reputation for grilling the staff with their questions.

Thank you for all the Happy Things you've all sent. Sometimes people stop by just to check out my happy wall. I would always enjoy more!

Thursday, October 25, 2001 at 06:01 PM (CDT)

Hey everybody, I'm on the way up! Today one of my doctors said maybe I'll break the record of the earliest release after transplant. So far the record is 10 days after transplant, but I wouldn't mind breaking it. The good news is: I have an ANC today! That's "absolute neutrophil count" or the number of disease-fighting white cells in your body. My number is 69 today. That means those cells went right where they were supposed to go! And I haven't had a fever since Tues. a.m. Plus my mouth sores are looking better!

Mama is happy to report this news, but also has a typical "Stinker" story to relate. Yesterday I got sick a couple of times (common from the amount of mucus that goes into my tummy), and I was really tired. Well, at bedtime I got sick, and my nurse, Stacy, gave me some Ativan. Now usually I really like Ativan. I just smile and enjoy the relaxation. But right away mama commented on how much of a stinker I was being. Now mind you, it's 10:00 p.m. and we're just beyond tired. But I just won't lay down. Mama was getting really fed up with my antics, like hissing and saying, "c'mere snake." But finally an hour or two later, mama noticed I was staring into the air and catching things in my hand (in the dark!) So it seems I was having hallucinations that were keeping me way too stimulated. One of the less common side effects of Ativan. I finally went to bed around 1:30 a.m. Stacy said it was lucky I wasn't scared by the hallucinations. Mama said it was lucky she noticed I was hallucinating before she spanked my heiny.

Despite my late bedtime, I felt good enough today to get down on the floor with the physical therapist and do a little dancing and marching. I also asked for "unk" (that's milk to you) and drank a couple ounces. First thing in my tummy since Sunday! Later on I had a couple bites of ice cream too!

Hopefully the next time you hear from me, I'll be fever-free with an ANC over 500 because then I'll get to come home!

Tuesday, October 23, 2001 at 08:39 PM (CDT)

Okay, keep that positive energy coming everybody! I got a fever Sunday night and have felt kind of yucky ever since. They can't find any bacteria in my blood yet, so we hope it's just a case of the general yucks.

Yesterday I just laid around all day. I couldn't even find the energy to dance when mama played "Wheels on the Bus." And that's one of those songs I just have to dance to! I like to climb on the bed rails and hang on to mama and dance, but yesterday I said, "Stand. No no." Mama said, "Yeah you can stand," so I did, but only long enough to "honk, honk, honk" before I had to lay back down.

See, one of the bad things about the big chemo is, even though it kills the cancer, it also hurts some of my good cells. Like this week, the lining of my digestive tract (mouth all the way on out!!). So today I have some mouth sores and when mama asked me if I had any owies, I pointed to my stomach. So my nurse Dana (who is on to Daddy for asking her all those questions!!), asked if I wanted some medicine. I cried and said, "NO!" But then mama asked if I wanted medicine through my buddies (my central line), and I nodded super-fast and said, "YES!"

So Dana gave me some morphine, and I played all afternoon! I climbed on the bed rail, painted a wooden toy with Susan (sort of like Julie McCoy from Love Boat, she directs all my fun activities), and danced with Johnna, the social worker who swears I'm the only one she calls "Princess". I told her when I feel better, I'm gonna sneak around the halls and make sure!

It's Daddy's night to stay with me, and mama has been busy, busy printing out cool pictures and messages to add to my mural. Thanks. It sure is fun and colorful.

The doctors said the worst of my mouth sores should be getting over by Friday. So let's visualize a nice healthy mouth (and on down too). And here's hoping for a good night's sleep tonight -- for all of us.

Tuesday, October 23, 2001 at 08:08 PM (CDT)

Well, everybody, keep that positive energy coming! I got a fever Sunday night and have just felt kind of yucky ever since. Yesterday, I pretty much just laid around. Even when mama played "Wheels on the Bus" - and I usually like to climb on the bed rail and hang on to mama and dance to that song -- but yesterday I said, "Stand. No No." And mama said, "Yeah, you can stand." So I did, but only long enough to "honk, honk, honk" before I had to lay back down.

See, one of the bad parts of this whole deal is happenning right now. The big dose of chemo kills all the cancer, but also hurts alot of my good cells. Like right now, the lining of my mouth and way on down the digestive tract all the way out. So I have a few mouth sores, and today pointed to my tummy when mama asked if I had any owies. So my nurse Dana (who is on to Daddy about asking her so many questions!!) asked if I wanted some medicine. And I cried and said, "NO!" But mama said I could have the medicine through my buddy (my central line) and when they asked if I wanted it that way, I nodded quick as can be and said, "YES!"

Dana gave me some morphine, and boy did I feel better! I played all afternoon. I climbed the bed rails, painted a wooden toy with Susan (she's sort of like Julie McCoy from Love Boat, she directs all my fun activities) and danced with Johnna, the social worker, who swears I'm the only one she calls "Princess" (I told her when I feel better, I'm gonna sneak around the halls and spy...just to be sure.)

Tonight is Daddy's night to stay with me, and mama has been busy, busy, busy printing out cool pictures and messages to add to my mural. It is really growing already and sure is neat! Thanks!

The doctors said by Friday the worst of the mouth sores should be over, and I may be on my way to feeling better. So far, no bacteria is showing up in my blood work, so my fever may just be a general case of the yucks.

Here's hoping for a good night's sleep (for all of us!)

Sunday, October 21, 2001 at 10:35 AM (CDT)

I am a new woman! I had my stem cell transplant on Friday. We celebrated my stem cell birthday with party hats, a Pooh banner, plus I got to decorate cupcakes for all the staff! (I tasted the frosting, but that's about it!)

Other than being smelly (the cells have a preservative that smells like you just opened a million cans of creamed corn, and I exhale that smell), I am doing great! I am starting TPN (iv nutrition) today because I'm just not in the mood to eat. Not even my usual hotdog and peas, even though the nurses ordered that for me for every meal.

My chemo went well. I only got sick twice, and otherwise acted just like myself. We keep a big chart on the wall and I get a sticker for every big part of my day: trying each of my meals, brushing my teeth (4 times a day!), taking meds, and bath. I love picking out my stickers.

We are also making a big "happy mural" on the wall. My visitors are writing or drawing something that makes them happy. For my mama it's cafe latte (she is a simple person) and for my daddy it's remission (he always goes for the big stuff!). We have some printed out from emails, too. Several from Iowa and one from as far away as Arizona! So send yours on to us so we can add it. I tell everyone to "purple on paper" (because I call any writing instrument 'purple').

My aunt Nicki (but I call her Impy or Mimi) came to visit last week. Sometimes I also call her "babies" because she left her 2 babies at home to visit me. She made lots of meals for the freezer for mama and daddy, and played some special games with me.

Hopefully, we will keep you updated with good news. The nurses said next week is "hell week," but they also always praise me for how well I've done so far, so maybe my good luck streak will continue. In the meantime, send me lots of positive energy, and visualize all my bad marrow shrinking away and all the good cells going immediately to where they need to go!

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