Journal History

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Monday, January 14, 2008 4:42 PM CST

Hi, everyone! We are "chilling" out at the Ronald McDonald House in Burlington, Vermont. Literally. It has been snowing all day. It is a light beautiful snow - not too much accumulation but so pretty to look at.

The snow made everything fresh and new, and so it made the day Katie started her next treatment plan all that much better. Today, we signed the paperwork to enroll Katie in a Phase II clinical trial at the University of Vermont. She is patient #1! There is an infusion bay at the clinic, and there were four families...all neuroblastoma. It was amazing. Katie has to take her nifurtimox three times a day, three pills each time. They are bright yellow. They are supposed to cause a lot of stomach and abdominal upset, but Katie only complained once, took an anti-nausea med, and she is fine. We still have no word on her bone marrow results.

We called Delta Airlines today, managed to get a wonderful woman on the phone who understood our situation, and she changed our flights without charge. Good things happen! No word on insurance coverage yet, but I have a plan...I'll fight Tricare forever to cover this. We will be flying out of here on Friday morning at 6:30 a.m.!

We had a nice weekend. We slept in both days, wandered arond Burlington and the outskirts, and even went to ECHO. It is a beautiful area. We've been trying to spot Champ, the Lake Champlain monster, but we've had no luck.

I am putting new pictures on the webpage...check them out...now with earrings!

Love, Michele

Saturday, January 12, 2008 8:24 AM CST

Good morning!

Yesterday was a long day, with more news. It ended up in a good way though!

We were allowed to sleep in...and headed for a meeting with the doctor at noon. She was delayed, so Katie took a snooze while Mike and I ran to get some lunch. The research nurse came in and went over a bunch of stuff with us. They had been hoping to have us there at noon to start the trial, but unfortunately, they were still waiting on one more e-mail.

Then, we met with Dr. Sholler and we got some amazing news. We got the results of all of her scans and tests except the bone marrow. KATIE HAS ONE TUMOR. The only thing lighting up on her MIBG scan is the tumor on her skull. We were in shock, given that in October she had extensive disease in her pelvis. This was great news and gives Katie a great starting off place for this clinical trial.

We went over the consent forms, and then were told that if the approval went through (still waiting on the lawyers, of course), that we could start Monday, but that would mean we could not leave until Thursday afternoon, not Tuesday morning. However, no one wanted us to change flights or do anything until we got the definitive word.

We left the hospital and went to a bookstore to have a cup of coffee and relax a little. That's when Dr. Sholler called to let us know the trial is all approved and we are ready to go for Monday! It was a giant relief - I'm sure for Dr. Sholler and her staff more so than even us. I know how hard they all worked to get this done. I told her that we appreciated everything, and we will start Monday!

During this whole day, I threw my back out and was in agonizing pain all day. I told Katie I was having sympathy pains for her back pain from the bone marrows. We walked around like two old women all day - it was pretty funny. I couldn't even put my shoes on. It made me very thankful to have Mike here.

The pain in our backs is much better today and we are hoping to have some fun at ECHO (the aquarium on Lake Champlain). We also have to find a Sprint store because the screen on Mike's phone is now blank...RRR. The weather has turned colder, and we keep waiting for the snow!

On Monday, Katie will start taking nifurtimox - 3 pills, 3 times a day..for a very long time, we hope. In 42 days, she will start chemo - topotecan/cytoxan and zometa, and that will last for five days. She will have to have that chemo here in Vermont. We are hopefully going to be home on Thursday or Friday next week.

I will post the earring pictures as soon as I can. Mike has to upload them on the laptop. Hopefully it will be this weekend!

Love, Michele

Friday, January 11, 2008 9:42 AM CST

Hi, everyone!

This may be a long one....yesterday was very interesting! First of all, we have had great experiences with the child life therapists here - much as we do in South Carolina. We have met three Jennys in child life (seems to be a prerequisite here), and they are so fun, and have been very helpful.

We met up with Jen G for the MIBG scan - it went fine, but very, very long. I definitely saw a light up on Katie's skull, but we will get results today. It took forever. After that MIBG scan, we headed to MRI for an MRI of Katie's spine. The longest MRI Katie ever had was about 45 minutes long. We were told that they were backed up, and couldn't start for another 45 minutes, and that the scan was to take 2 1/2 hours! Katie was not happy, because...she hadn't had anything to eat or drink all morning waiting on her surgery (bone marrow aspirate that requires anesthesia). Katie announced then and there she was not going to have that stupid MRI - and they could forget it! That becomes significant later!

We called oncology, and we were told to come up right away for the bone marrow, then we could do the MRI afterward. We met up with Lynn and Ray - who were the ear-piercing folks! Lynn actually did the ear piercing, and Ray was the paperwork guy! They were from Wal-Mart, who donated everything. Lynn also gave Katie a prayer blanket she knitted in a gorgeous blue. Over this eight years, we keep meeting generous, giving people, and this makes the journey so much easier. Thanks, Lynn and Ray, and thanks, Penny the social worker who arranged this.

Katie was put to sleep, and we stayed in the room and watched her get her ears pierced. The earrings are blue sapphires - so pretty. Lynn did the first ear, and Katie didn't moan or anything, but she turned her head toward the ear piercing gun. Lynn had to pick up her head and move her to get the gun out! At that time, Dr. Sholler, Katie's nurse Tania, and Mike all groaned out loud. I thought they were just commenting on how much that would have hurt had she been awake, but they had all come to the realization of something at the same time....earrings are metal, and NO METAL OF ANY KIND is allowed in MRI. So, there was no turning back...she had the second ear pierced and then they did the bone marrow. Dr. Sholler did very well, and got enough of a sample right away. Katie woke up from anesthesia with beautiful pierced ears and holes in her back, and a canceled MRI. It was a perfect day for princess! She got all her wishes!

The MRI of the total spine is usually done before this trial because the drug nifurtimox can cause swelling of the specific neuroblastoma tumors. So, if there are tumors on the spine, they could swell and cause paralysis and lots of other problems. Katie hasn't had spinal disease since her original diagnosis in 1999, so we think it will be ok to skip the MRI.

We headed to a pizza place that had some arcade games instead of MRI and had some fun before the pain in Katie's back from the bone marrows started to kick in. Then, we went back to the RMH to relax a little. We spent the evening with a bunch of families here - just talking, laughing and eating...it was great. One of the families is in the same trial as we are hoping to get in (they did the Phase I and continue the same drug with good results). The other family has been coming here for a long time - they had triplets and two survived, and they are almost three years old. Katie bonded with the little girl, Ellen, and has been carrying her around and playing with her ever since. Now remember - Katie had bone and marrow drilled out of her hips yesterday, and she is carrying around a three year old. She's been taking some pain meds, but not nearly as much as she should be. Have I said that she is amazing lately?

The news we received about the approval of the Phase II trial yesterday was not encouraging. The lawyers still have it bogged down. We are scared, but at the same time - when it opens, we know we are in the right place. Dr. Sholler and her staff are amazing. She is so fun, and seems to have surrounded herself with the same type of people. If we have to be somewhere, I'm glad it is here. We have heard horror stories about home hospitals not supporting the trial here, but luckily we have that too. We know that our doctors and nurses and everyone in SC hope for the best up here, and will do what they can. We are truly blessed.

Thanks for all the notes, we just love them. I'll update after our meeting with the doctor today.

Love, Michele

Wednesday, January 9, 2008 7:02 PM CST

Hello from Vermont!

It really is a beautiful state. Today, the weather started turning colder, and we are now having very high winds. I hate high winds from when we lived through a bunch of windstorms in Germany, but Katie is zoned out in front of the television in the living room of the RMH, and could care less.

Katie had a CT scan of her head, neck, chest, abdomen and pelvis this morning, and then the injection for the MIBG scan that is tomorrow. The CT went fine - everyone was very, very nice. The contrast Katie had to drink was hideous (I actually know how it tastes because I took a sip). It was awful, but she got through it - 16 ounces of the stuff! She is amazing. We met a second child life therapist who hung out with us the entire time, and she is coming again for scans tomorrow - it was great. They really seem to focus on how the child feels, and it makes things much easier. We haven't met an unfriendly person yet.

Today we got to sneak away to the Vermont Teddy Bear Factory - it was fun. We had our own personal tour because there weren't many people there. It was a nice break in the middle of the day. There will be no breaks tomorrow, and tomorrow night Katie will be in pain. Tomorrow morning is the MIBG scan, then after that an MRI of her spine, then at 1:00 p.m. a bone marrow aspirate and biopsy. We'll probably be back at the RMH in the late afternoon, and Katie will be on major pain meds from the holes in her hips. AND HER EARS! We haven't heard anything otherwise, so we are thinking the ear piercing is going on as planned.

We've met several neuroblastoma families up here. We have no word on if the Phase II is official yet, but we are just FROGging it (Fully Rely on God!) And no, Beanie, I did not add that part of Katie not being inpatient just for you...you weren't the only one asking!

And finally, to all of Katie's classmates, teachers and staff at Southside - she really, really misses all of you and would much rather be there than in Vermont. She loved the notes from her 6th period class! Thanks, all of you! We are hoping so much for no side effects from this new treatment regimen so that she can be in school as much as possible. Katie is NOT really upset about missing exams though - ha ha. Teachers, sorry - she'll catch up when we get back.

Take care, everyone.

Love, Michele

Wednesday, January 9, 2008 7:01 AM CST

It is Wednesday morning, and we are eating breakfast at the Ronald McDonald House in Burlington, Vermont. I need to clarify something - Katie is not inpatient. We get to come back to the RMH every day.

Yesterday was our first meeting with Dr. Giselle Sholler. She is wonderful. It was a good experience, other than the information we received. Apparently, the Phase II clinical trial is not open yet because of...the lawyers. Nice, huh? The first drug Katie is to receive - nifurtimox - is an antibiotic that is only made overseas. Because of that, it was deemed necessary by the lawyers that everyone at Bayer International sign off on this Phase II trial. Everyone involved has been working 24/7 to get this to happen, and hopefully it will by Friday, when Katie is to start the drug.

I offered my voice and my telephone to help in this, but so far, they have turned me down. Celia, I told them about our connection to you and they said to wait...absolutely everything that has to be done is being done.

We are still keeping the scan schedule and Katie will have a bone marrow aspirate tomorrow. I can tell you that we have landed in a place that is as absolutely insane as we are. Let me tell you why...

Katie wants her ears pierced. She can't stand needles. She has wanted her SC doctors to pierce her ears during a bone marrow or any other procedure that involves anesthesia. They kind of pat her on the head and laugh. Katie decided, after hearing that Dr. Sholler is young, fun, and listens to her patients, that she needed to write her a note to ask her to pierce her ears during the bone marrow. Dr. Sholler said, "Cool, let me see if I can arrange that." Then, the social worker, Penny, came in, totally psyched, glad to have a project to get involved in that didn't involve two days of paperwork. So, it looks like Katie will have her ears pierced during her bone marrow aspirate tomorrow.

We managed to sneak away to the Ben & Jerry's factory yesterday and it was really fun. Today, tomorrow and Friday are long days at the hospital. We got free passes to ECHO (the aquarium here), and maybe we can go this weekend if Katie's pain from the bone marrow isn't too bad.

Erika is doing great with Nanny and Aunt Sandy. She has been well behaved at school, and enjoying the attention she is getting from her wonderful grandmother and great aunt. She also has the Wii, and there is no television in our room at the RMH, so we are very jealous!

Take care, everyone. Internet service is sometimes a little difficult to get at the RMH, so I'll try to update when I can. Katie is watching over my shoulder, and she says hello, too!

Keep up the prayers that everything with this trial gets approved and we can start on time!

Love, Michele

AND KATIE

Monday, January 7, 2008 8:42 PM CST

We are in Vermont!

Our traveling was great - no problems, other than we took way too much stuff. It is beautiful up here - warmer than expected, and there is still snow on the ground. Katie is enthralled. She made a pile of snowballs to hit Mike with, then we couldn't get him to come out to get creamed. There's always tomorrow...

Katie said the funniest thing in New York (we changed planes at LaGuardia...) When we got to New York, everyone we talked to seemed to have an accent. They were announcing our flight to Vermont, and Katie asked me why there were so many bohemians in New York. I busted out laughing. The guy sitting next to us was definitely a bohemian, but she had no idea what that meant. I think she meant something along the lines of foreigners, but it was still really funny.

We spent a lot of the day just trying to stay together. When we travel, everyone assumes we aren't really a family. People cut us off from each other all the time. I can't tell you how many times today Katie was asked if she was traveling alone. At one point, I told her just to fake it, and maybe she could get some cool stuff. Debbie W., you would have loved it...

When we got to Vermont, a lady from our flight came up to us to tell Katie that she just enjoyed watching her, and she was so cheerful that she made her day, then she said we looked like a great family. Hey - at least one person could tell we were together!

I just can't believe we are here..for what seems like the last treatment plan. Katie looks great, feels good, and certainly doesn't look like someone on the last fight against a terminal illness. She is amazing.

No word yet on Tricare. I'm holding my breath. Take care, everyone.

Love, Michele

Saturday, January 5, 2008 9:59 AM CST

Hi, everyone!

Katie has had a great week. She feels pretty good (still a little tough to be too energetic). Her blood counts are on the rise, and she hasn't had any fever. Katie and Erika have been with Mike all week while I went back to work, and believe it or not, the three of them got along well and have had a good week.

On Wednesday, I heard from Tricare that we are NOT approved to go to Vermont because the nifurtimox/chemo is only a Phase I clinical trial, and Tricare refuses to pay for any Phase I trials. Well, the trial is opening as a Phase II (that Tricare would cover) on Monday, January 7th. The woman from Tricare argued with me about this, then said that she wasn't even the person who would be dealing with this. She was nasty about the whole thing. I have railed at this same person before. I called our insurance contact person in Vermont who assured me that they are waiting on one letter that was expected by the end of the week and everything would be fine. It didn't stop me from telling the woman from Tricare that it seems to me that Tricare is more interested in paying for hospice than paying for treatment. All I kept hearing is, "It's just our policy." I HATE INSURANCE COMPANIES.
And by the way, we STILL haven't heard that this is covered. I have put this in God's hands because I can't worry about it anymore.

We leave on Sunday evening for Charlotte - that was the cheapest flight we could find. Mom and Aunt Sandy will be here with Erika until we return on the 15th. I'll update from Vermont if we have a wireless connection. I've been checking the weather and it looks like our first week in Vermont will be very good - one of the mildest they have seen in weeks. That's great because now Katie is ok about flying, but is thinking about refusing to get off the plane because it is too darn cold.

Katie's laughter this week has been contagious. The girls are continuing to enjoy the Wii and all of their Christmas gifts. Katie is very disappointed about missing school again, but Erika is totally jazzed about going back. Even though she has a tough time in school, she loves being there with her teachers and her friends and learning new things.

I'll update once we get to Vermont. Take care, everyone.

Love, Michele

Tuesday, January 1, 2008 7:16 PM CST

OK OK OK...HERE'S THE UPDATE!

Happy New Year, everyone!

We just finished our New Year's dinner. Unfortunately, we have not become true Southerners (surprise, surprise to my friends down here!) We had sauerkraut, pork and mashed potatoes - a real Pennsylvania Dutch tradition. Katie HATED it and Erika tolerated it, but Mike and I were in heaven!

The past few days have felt like heaven, too. Christmas Day was wonderful. We relaxed, ate too much food, and took our time opening presents. We had a great day. Then, the day after Christmas, we left for Asheville, North Carolina. We stayed at Pat & Joel's house - and it was amazing. We even took Charlotte and Lucy with us. The house was gorgeous. It felt like we were escaping.

We had a lot of rain, but still managed to squeeze in some fun things. We also were very, very silly. We took the Wii with us, and had a blast playing that. Katie, at first, was tired and her stomach hurt a lot, so she rested. Our first night there, I cooked dinner, it was cold outside, and so comfy in the house. Katie slept most of the afternoon then we played Wii in the evening. The next few days were filled with good food, fun (the Fun Depot to be exact, shopping, touring Asheville, seeing tons of gingerbread houses at the Grove Park Inn). The highlight of the trip was when Pat and Joel and Joel's daughter came up to Asheville, and we went out to dinner at the Biltmore Bistro. It was a very nice restaurant where we proceeded to laugh, talk too loud, play the crystal glasses with our fingers, and ate great food. The three girls and the four adults were crazy. Then, Pat and Joel dropped us off at THEIR house, and went to a hotel. It was quite bizarre!

We were supposed to come home Sunday, but it was pouring down rain, and no one felt like moving. So, we stayed another day, and came home yesterday afternoon, right when everyone started to argue and not get along. The perfect vacation, right!

During the time we were in Asheville, a lot of things happened with Katie's treatment. First, the lump on her head is gone. Chemo? Prayer? Both? That means no radiation necessary! She feels good, although today she tried to ride her bike, got to the end of the street, and came home completely exhausted. She tried again later, and the same thing happened. We think her hemoglobin is pretty low, but that's ok. Katie had blood work done yesterday at our local hospital, but we don't have results yet because of the holidays.

In the meantime, the doctor in Vermont would like us to do all preliminary tests up there. So, we have plane reservations for Monday, January 7th, and Katie's first appointment at the Vermont Cancer Center with Dr. Sholler will be on Tuesday, January 8th. She'll have scans and a bone marrow biopsy and aspirate Tuesday, Wednesday and Thursday, then start the nifurtimox on Friday. She'll have blood tests (pharmokinetics) done on Friday and Monday (frequent tests during the day to see how the drug is metabolizing in her blood), then she'll be done late Monday the 14th. We fly home on January 15th. And, because Mike has no job, it will be me, Mike and Katie going to Vermont. Erika is going to stay in South Carolina, go to school, and hang out with Nanny and Aunt Sandy. This was my parent's idea, and I can't tell you

This means that Katie can go to the overnight lock in at the South Carolina Aquarium in Charleston on January 19th with her buddies from Camp Happy Days. That was her only requirement for this trip to Vermont - it can't interfere with the lock in. Cancer treatment ALWAYS takes a back seat to Katie's social life.

I can tell you that Katie has had her moments in the past few days of incredible grumpiness and downright nastiness (just moments), but after all the time we have spent together we got to the bottom of it - she is very nervous about flying, about Vermont, and about this new treatment. She knows it won't hurt, but it's the unknown. So, please send her a message to stay strong and keep FROG, and we know it will help.

Hope everyone had a great holiday season. I know that even with the bad news we have gotten - Mike's layoff and Katie's progression, we have squeezed every ounce of fun we can out of the time we have had together.

And so I won't forget in the years coming up, I have to write an inside joke to Mike, Katie and Erika from our trip: YOU NO PUT TRASH IN THERE, YOU BIG MONKEY!!! And I won't explain, so don't ask!

Love, Michele

Tuesday, December 25, 2007 4:14 PM CST

Merry Christmas, everyone!

We have had a great time. Yesterday was one of those days I will treasure for a long time. Katie had some dizziness, but other than that, she felt pretty good. We baked cookies, got ready for Santa, went to church, went to a party (and had a blast!). We also got a very, very special surprise. Right before noon, the UPS guy delivered us our very own Wii! Frank Amuruso, a friend of Flash's, sent it to us for Christmas. We have never met Frank - he is from Pittsburgh - and we are overwhelmed at his generosity. We have been practicing and playing and having a blast!

The best news of all is that the tumor on Katie's head is significantly smaller. You can barely see it now, whereas before it was very noticeable. I was so hoping this chemo would help - she may not need radiation now. That is something we'll bring up after the holidays.

Twelve years ago something happened that changed our lives forever. This is the anniversary of the day we met Katie. Christy was her volunteer Guardian ad litem when Katie was in foster care, and on Christmas Day 1995, we got together with Christy and Toby and Christy's parents, Jack and Judy, and had Christmas dinner together. We met at the Wendy's on Garner's Ferry Road. I just knew as soon as I saw her that she was our daughter. Katie was nineteen months old that day. She had a red and blue sweatsuit on - it had a bunny on the front. I still have the outfit. She had curling Christmas ribbon in her hair, and was the cutest thing we ever saw. She had a huge belly that day and was proud to show it off. She walked around with cheese stuck in her hand all day, and offered it to everyone (ick!) She loved Grammy Mason's snow globes, avoided the tile floor because it was slippery but ran everywhere else, and stole our hearts in about five minutes flat. It took ten months, but we finally convinced DSS we were worthy. But I'll never forget that first day when I laid eyes on our baby.

We think our trip is a go, so I'll update in a few days. Take care!

Love, Michele

Monday, December 24, 2007 7:24 AM CST

WE ARE HOME!

Katie and I got home late yesterday afternoon. We left the hospital about 1:00 p.m., went out for lunch, did a little shopping and got home about 4:30 p.m. Erika got a surprise visit from Nancy, and got to spend the afternoon with her, so it was perfect. We went out for dinner - just the four of us - and to look at Christmas lights. It was awesome after five days in the hospital.

I had a long talk with Katie's doctor yesterday and he is on board with our plan. He told us he was prepared to give us the "you've done everything you can, just make her comfortable" speech, but...he had seen her up playing the Wii, laughing, playing with her friends that came to visit, sassing him...in his words, she feels too good to not pursue something. It was all tempered with...you know the odds you are up against, right? And we do.

So, we are going to bake some cookies today, go to church, possibly get to a party (that would be your party, John David!), and enjoy whatever Santa brings tomorrow! Then, we'll go somewhere special. The first week of January is going to be tough, but since Katie loves radiation therapy, and gets to visit her buddies in Nuclear Medicine, the only hardship will be the drive to Columbia.

Have a wonderful, Merry Christmas, everyone!

Love, Michele

Saturday, December 22, 2007 8:32 PM CST

This morning, Erika and I got up and packed up a picnic lunch to have with Mike and Katie in the hospital. Erika never gets to go the hospital, so we thought it would be a good idea to have her with us today. She was great - very happy and she behaved...other than Katie's usual attitude toward her, it was great.

Katie spent a lot of the day napping - typical during this chemo, but she did get up to play Guitar Hero (ok, I made her do it because it is too embarrassing to play on my own), and we got the Wii back late in the afternoon and she played a lot on that.

We had a bunch of visitors today and it really made the day fly...in fact, it is 10:45 p.m., and Amy just left. Katie had good energy when she was awake, and she ate a lot today.

We are most likely going to stick to this plan: get discharged tomorrow, go on a trip after Christmas, then after New Year's Day, do some scans and possibly some radiation to that skull lesion, and head to Vermont for a Phase II clinical trial of nifurtimox/topotecan/cytoxan. The decisions have been difficult, but we are not second guessing. Katie's options are very, very narrow at this point. Not that you can tell by looking at her. Her laugh is infectious (and loud!), and she has a fierce determination just to have fun.

On the Wii is a fitness test. Elizabeth, I'm sorry - but I have to put this out there...Elizabeth, one of Katie's counselors from Camp Kemo, Katie and I all did the fitness challenge on Wii. It's actually just a test of the baseball, tennis, and bowling games on the Wii. Now, you all know me - the lawyer/cancer mom who doesn't exercise and hasn't ever found a dessert that was yucky. Elizabeth is a middle school PE teacher, and then you have Katie - 13 year old girl with relapsed neuroblastoma and on day 4 of a tough chemo regimen. The results of the Wii fitness challenge? The Wii "grades" the player with an age. Katie - 1st (age 35), Me - 2nd (age 51), Elizabeth - 3rd (age 69).

The payback for that last story will most likely be a video on YouTube with me playing the Wii. Elizabeth was taking video without my knowledge, and I would swing, and then moan in agony because my arms and shoulders are sore. Katie is laughing hysterically in the background. It was quite a sight.

It looks like we will all be home tomorrow, and we can't wait. Thanks for all the guestbook messages. I don't know if you read them all - it really lifts us up, and when I visit other webpages, I love to look at the guestbook. Our neuroblastoma community is pretty small, so we like to go visit other families. One of the messages on Katie's guestbook was from Becky Smith...her daughter Sarah is 12 and has relapsed neuroblastoma. I wish my journaling was as good as Becky's. Go check it out... the address is www.caringbridge.org/nc/sarahsmith. I could make a list of 50 other websites for our NB kids, and others. It's just helpful to know that other families face the same type of challenges.

Have a good evening, everyone.

Love, Michele

Friday, December 21, 2007 8:07 PM CST

Like most days, this one has had its major ups and major downs.

First, for the ups...Katie has felt pretty good - getting a little more tired, but no pain, no nausea, no bladder problems. She's eating ok, and she has laughed a lot today. We continue to be surrounded by great medical staff that spend more time with us talking and laughing than having to actually work...well, that's not true. Katie is on constant fluids, she gets two different drugs for nausea that run on 8 hour shifts, she gets two chemos, and another drug to protect her bladder. Yet, they make it look effortless.

Today, a very generous and kind family delivered to the inpatient unit a brand new Wii unit. It is for everyone in the cancer inpatient unit, but we were lucky enough to get the first chance at it. It was awesome! I just had to take some ibuprofin for my sore arm, and I only played for about half an hour. It got Katie out of bed, and moving, and it was so much fun! She is really good at it. I called her tonight (Mike is staying this evening), and he was just laughing and laughing watching her play.

Now for the downs. Katie has progressed again, and she has a new, relatively large tumor in the bone in her skull. It has become pretty noticeable. Katie had a CT of her head today and it is definitely more tumor.

She has had three days of this chemo with two more to go. At first, her doctor suggested (before CT) that if this was progression, we would stop chemo. I didn't contradict him, but that was not what we wanted to happen. When the CT results came back, it was his suggestion to continue on with the chemo. So, it was his idea :). We are going to go on our trip after Christmas, and do some radiation after the 1st if the tumor continues to grow or if she has any pain. Like I said before, she feels great.

Then, after the 1st we will also scan her and decide what to do next. We are going to be in touch with the doctors in Vermont and Philadelphia to see what they suggest. This is almost what we had been expecting. When I look at the time in between progressions and how things have gone since original diagnosis, really, the last two months have been a gift. Stupid, stupid neuroblastoma.

I am kicking myself for giving her so much time off since the last chemo, but every time I do that, I think back to that concert, when she stepped up to the microphone and that booming voice came out of that beautiful little girl in her blue sequins...it was worth it. The problem is that I want that to be the first of her memorable performances, not...well, you can fill in the rest of that sentence.

Before we found out about this progression, a friend of mine who has been in a tough spot and I were talking about how we could have it worse. And we could. I think of all the children out there fighting this beast - those that became angels this year and in the past, and those that have to suffer through horrendous treatment and side effects. Yep, we could have it worse.

For tonight, when I close my eyes to go to sleep, I will think of the last time I saw my girl when I left the hospital. She was grinning like crazy, standing in her hospital room in her multi colored leopard print jammies, her purple robe and slippers, waving a Wii wand, yelling, "Love you Mommy, be careful and don't forget my Netflix movies tomorrow!" And then I'll thank God for every moment she has to squeeze every bit of life out of this time she has been given. If that's not an example, I don't know what is.

Take care, everyone.

Love, Michele

Thursday, December 20, 2007 9:37 PM CST

Katie had another good day - a little quieter, but still some fun. She had her chemo in the early afternoon. She's been eating pretty well, and this afternoon she took a very long nap. That's probably why at 10:30 p.m., she is wide awake. So far, no side effects, except a little fatigue. That's better than bladder problems, diarrhea, and vomiting! We'll take it.

After nap time was dinner time, and she enjoyed some steamed shrimp thanks to Grammy Mason. It was great! Then we watched a little TV, she played on her laptop, and we then made these cool bouncing balls. It was a kit where you fill a mold, pour in powder, soak the mold in water and ta-da...a rubber ball. We were just out in the hall with her Tech, Jenny, bouncing them all over the place.

Tomorrow is Mike's last day of work. Erika is spending the night with some friends, and tomorrow will be her last day at the YMCA. It's like the end of an era. We are fine. Thanks for all the phone calls, e-mails and prayers. We are looking forward to a very fun Christmas, and we hope everyone else has a good time, too.

I'll try to update tomorrow.

Love, Michele

Wednesday, December 19, 2007 9:14 PM CST

Hi, everyone.

Katie was admitted today for chemo at Richland Memorial in Columbia. She has already had her first dose of each chemo, and she's had a pretty good day. In the first hour and a half Katie and Mike were there, she saw a parade with the therapy dogs, visits from two different Santas, a snowman being wheeled on a stretcher, and the Chik-Fil-A cow. Katie wanted Pizza Hut for lunch, so Mike was searching for a Pizza Hut close to the hospital. Right about that time, the second Santa showed up, gave Katie a nice gift, and asked her if she was hungry...of course, her response was, "Only if you have Pizza Hut pizza..." Guess what - he did. God is good.

The rest of the day was fine, and I hope they are sleeping right now. I have depositions tomorrow, then I'll head into the hospital for Thursday afternoon, Thursday night and most of Friday. Friday will be Mike's last day of work.

I'll update tomorrow night from the hospital.

Love, Michele

Tuesday, December 18, 2007 8:38 PM CST

Let's catch up...and sorry for being so slack on the updates...a lot has happened.

First - the samples taken from Katie's bronchoscopy have shown nothing - no nontuberculosis mycobacterium - nothing. Her cough is gone and she's had no fever.

Last Thursday, Katie went to school like she hadn't just spent three days in the hospital, and sang with the Blue Notes in the morning before school (they sang to the students and teachers coming in to school), then they headed to the First Baptist Church around lunch time to sing there. Friday, Katie went to school, then that evening Mike and I went to his office Christmas party.

Saturday, the girls and I went Christmas shopping for Daddy, then headed to the Church at Sandhurst for what was one of the best Christmas concerts I have ever seen. We had a great time. We brought home one of Katie's friends to spend the night, and they huddled in her room like two little teenagers and ignored the rest of us.

Sunday, we went to church, then headed to the movies, but first picking up another one of Katie's friends to all go to the movies together. We saw "Alvin and the Chipmunks" and we all loved it. Then, we took the other two girls home and stayed in for the evening.

Monday, Katie went to school like clockwork - early even, to do something with JTI, then went to the Blue Notes Christmas party at Ruby Tuesdays. Mike picked Erika up, then Katie from her party, and immediately went to the Mall to go shopping for me, while I went to my office Christmas shindig. She got home at 9:00 p.m., and so was gone from the house for 14 hours. I had to chase her to bed.

Today was the last day of school before Christmas break. I honestly think she is disappointed. She is upstairs now, it's 9:45 p.m., and she is packing for the hospital. Katie will be admitted tomorrow for round 3 of ifosfamide/etopiside.

And five minutes ago, Katie asked me if this is her last Christmas.

Just wanted to throw that in just in case anyone reading this assumed we have a normal life.

Hovering over all of this fun for the past several days has been some news that we have almost been expecting - Mike is being laid off. His last day of work will be on Friday. While this is scary and upsetting, we are focusing on the bright side of things. Mike will be available for the girls, he won't have to spend so much money on gas (he works 40 minutes away and drives an F-150! ouch!), and I can finally get the wife I need as a trial lawyer...HA HA!


hi everyone this is katie tee-hee


Guess who just typed that line above? Katie is now hovering over me watching me type this. Let's see if she'll help me....Katie - you pick something to talk about.

KATIE: No, you start it!

MOM: What do you want to talk about?

KATIE: I don't know! Just think of something!

MOM: Excited about Christmas?

KATIE: Yes, because we are going to the....

MOM: STOP. Don't jinx it!

KATIE: We might be going to the...

MOM: STOP! What is Santa going to bring you?

KATIE: I don't know. Mommy knows.

MOM: You talking about me? Yeah, I know what you are getting. Santa and me...we're tight.

KATIE: Can you tell me, PLEASE, PLEASE, PLEASE?

MOM: NO.

KATIE: Hm. Not fair. If Santa and you are so tight, why can't you at least tell me one present.

MOM: Ok. You are getting socks.

KATIE: I don't want socks! Not fair.

MOM: This update is getting long - say goodnight, sweet tart.

KATIE: Fine. Good night.

Love, Mom and

katie (tee-hee)

Wednesday, December 12, 2007 7:12 PM CST

WE ARE HOME.

Katie is thrilled, we are not. The bronchoscopy went fine this morning. We were down in pediatric sedation on time, and the procedure went smoothly. Katie had no problems with sedation (gotta love the "magic milk" - propofal), and she woke up very easily. She coughed a little bit, but otherwise was just hungry when she woke up. We were back in the room by 10:00 a.m.

We thought the stain results would be back today, but Katie's oncologist came for a visit and said that she had called the lab, and it would definitely not be ready until tomorrow. Also, another key timing for the stain is one week - the results could show up anytime in the next seven days. I think that the more severe the infection, the quicker it will show on the stain.

So, we got to go home. I really think that this excuse of the test results being delayed is not her oncologist's motivation at all. We had been planning a Guitar Hero tournament with the nurses, and this doctor, and I think she was just afraid to be whipped up on (Katie and I practiced for two hours today!) so she discharged us!

If the stain shows that bacteria I mentioned yesterday - or any other bacteria for that matter - Katie will start on antibiotic therapy (three at a time) right away, and then start chemo on the 19th of December. That will get us out the day before Christmas Eve. She won't feel all that great on Christmas Eve, but the upswing will start on Christmas Day. Then, her counts will fall, but we are planning something really, really fun for Christmas week, and the doctors gave us the thumbs up to keep our plans, even with chemo from the 19th through the 23rd. I don't want to jinx things about what we are doing, but it is going to be great. We won't be really far away - close enough to get to the hospital in case of fever - but we can go!

So, Katie is falling right back into a real life. The Blue Notes are signing tomorrow at noon at First Baptist Church, and she is also singing in the lobby at school in the morning. She has to wear her Blue Notes outfit to school tomorrow. I have added new pictures - you can see her in her Blue Notes outfit on the photo page. She is psyched that she can participate in something this week, and is not sad at all to leave the hospital - except missing the nurses, doctors and staff. It may have been a worthless three days in the hospital but it was tolerable because we are lucky enough to have great people taking care of us, and visiting, and calling, and PRAYING!

I do feel like I need to add that Katie feels GREAT. If this is some serious bacteria, she really hasn't let it make her sick. The problem would be to have her have very low blood counts while she has this bacteria - it could take off and the result could be a real nightmare.

Take care, everyone!

Love, Michele

Tuesday, December 11, 2007 8:19 PM CST

Katie's visit with the pulmonologist didn't happen until this evening. I left this morning, and Mike stayed with Katie today. The plan was to have this consult then decide either to start chemo because the pulmonologist thought her scans were fine, or do a bronchoscopy first thing in the morning.

In the meantime, I came home and took Erika to a two hour dentist appointment. No cavities, but she had to have two baby teeth pulled because her big teeth are coming in so fast. She was in a lot of pain afterward and begged me not to go back to work. Then, she insisted on taking a pain pill, became extremely loopy, and slept through dinner. She was sitting at the table telling me and my parents that she was drunk...quite a Kodak moment, and DSS here we come...she is much better now, eating popsicles and feeling ok.

The pulmonologist who saw Katie tonight is very concerned. He thinks she may have nontuberculosis mycobacteria. Don't be impressed...I had to look it up on the internet. It's a very serious lung bacteria. In fact, the disease even has its own website. Anyway, tomorrow morning first thing Katie will have another bronchoscopy (she had two of them eight years ago), and they will put her to sleep, take a sample of the goo in her lungs, and test it. We could know tomorrow if she has this bacteria. If it is positive for the bacteria, then she will start on antibiotic therapy (three different ones). If not - who knows. And the pulmonologist couldn't answer my question about when to start chemo.

So, no chemo today, no chemo maybe in the near future. It is very scary - neuroblastoma doesn't wait for anything - heck, it even ignores chemo, so going this long without treatment is like stepping off the ledge.

Katie is TICKED. She was not happy when I left, but Mike says she had a good day. The nurses let her wander around the hospital (getting up and working out those lungs is a good idea), so she hit up the gift shops in both the regular hospital and the heart hospital. I didn't even ask if they bought anything.

I'll be heading in very early to be there for the procedure, then spend the day. Thanks for all the prayers for chemo to start, but it looks like God has a different plan. Take care, everyone.

Love, Michele

Monday, December 10, 2007 7:49 PM CST

Hi, everyone.

Katie is an inpatient at Richland Memorial. The room number and phone number are listed below.

We had a great weekend. On Saturday, we participated in Florence Appreciation Day - ha ha. We went back to Shaw AFB to shop at the commissary and base exchange, and to hang out a little bit. The highlight of our trip was when we ran into Katie's friend Nicki's dad, Jay. We said hello, chatted a bit, then when he got home, Nicki's mom, Rosie, called us and we all ended up going out to dinner together at Stellato's. That's the restaurant that Katie loves because of Denise and the salad made up of shredded lettuce and cheese. We had an awesome dinner and caught up with what has been going on with our families. That Nicki and Katie are in eighth grade was really amazing. And the reason I said Florence Appreciation Day is because we did just that....we enjoy where we live now, and are glad to be there.

Sunday was nice - busy with errands, but Nanny and Pop Pop arrived at dinner time, so it was great to have them there. Instead of scrambling around to get everything done, Nanny said to leave the dishes and the three loads of laundry for her to do today - whew. Unfortunately, Mike threw out his back, and he is suffering, but hopefully he is on the mend, too.

That brings us to admission day. We got here at 10:00 a.m. and here it is almost twelve hours later, and no chemo. Katie's counts are gorgeous - 3.8 white count, 10.9 hemoglobin, 229,000 platelets - all perfect for what she has been through. It's that nagging cough. We waited all day for CT scan (there were 23 scans ahead of us, and one machine operational - this is a major hospital??? - and if someone from Richland is reading this - FIX THE STUPID SCAN MACHINES ALREADY - THIS WAS A PROBLEM A MONTH AGO!)

Anyway, the scan was finished in the late afternoon (I think we were back in Katie's room at 5:30 p.m.) and we got the results a little while later. There are "pockets" of air in the middle of Katie's chest, and they are questionable - not as new tumors, but maybe as more pneumonia, or a fungal infection...who knows. The best part is that she is completely asymptomatic except for the cough - no fever, no nothing else.

So, we meet with pulmonology tomorrow and they will give the thumbs up or thumbs down to chemo. I don't know what will happen if they say thumbs down..no plan yet that way. But if they say thumbs up, we won't get out of here until Saturday. I would much rather they give us the go ahead to start chemo, because then the alternative is to come in next week (and most likely return to the hospital with fever on Christmas Day)...or, wait another week, and definitely be in the hospital getting chemo on Christmas Day. Not good.

We had a great day otherwise. Katie took a long nap this afternoon, so I had two hours of uninterrupted rehearsal with Guitar Hero, so I could whip up on her this evening when we played. Joel and Pat got a good look at how insane we get over the game. Oh, and by the way - it was here, waiting on Katie, when we got here! We've also talked, played games, worked on puzzles, and just had some good hanging out time. This evening, a group of 10th graders from the First Church of the Nazarene in Columbia came in with some gifts for the inpatients. Katie got a Mancala game and a really nice prayer from one of the kids. They interrupted our Guitar Hero game, and it was kind of embarrassing - for Katie because I was winning! Ha ha ha....

Please pray that we can start this chemo tomorrow. Any more delay and I am going to get really worried. Take care everyone!

Love, Michele

Friday, December 7, 2007 8:27 AM CST

Hi, everyone.

We have had a great week. Katie feels fine and looks great. Last night's concert was wonderful. Katie sang a duet with a boy to Winter Wonderland, then sang a solo part in the last song of the concert. It was called "Song of Peace" and Katie kept telling me that it was her favorite song, and she just HAD to be there to sing it. I know I am biased and our child can do no wrong, but she was stunning. She is so tiny...her treatment over these past eight years has seriously stunted her growth, and she is pretty thin, but she has a beautiful voice that just rings out of her little frame. I started to sob on her first note of that last song, and didn't stop until about ten minutes after it was over.

Before the concert, she was telling me about the butterflies in her stomach. It was really sweet, but you could tell she loved being on that stage. It was one of the best concerts we have been to, and those children who sang last night really did a great job. We are proud of all of the Blue Notes, and all the other chorus members, and also of their teacher and director, Ms. Perkins. I was really touched by the look that Ms. Perkins and Katie shared at the end of "Song of Peace." There was pride on both of their faces, and it made me very comfortable in the decision to delay chemo and allow Katie to have what she wanted. Moments like last night are what parents dream about for their children.

Katie gets admitted next week for chemo, starting on Monday. She will miss two field trips and a party, but she's ok with that. She said that last night made it all worth it. Mike and I really are lucky to have her as our daughter.

Have a great weekend, everyone.

Love, Michele

Sunday, December 2, 2007 5:52 PM CST

Hi, everyone.

That little lymph node seems to have gone away - it's not causing any pain, and Katie has been enjoying school and doing well for the past several days. She is not at home right now - Katie went to see wrestling at the Florence Civic Center with her friend Tiffany and their family. She was so psyched to do this...she loves wrestling and she has gone to the live shows here in Florence twice before.

We haven't heard from the doctors in Philadelphia yet, but I'm sure it will be soon. They can't do anything until at least two weeks past Katie's last chemo, so it's not a big rush. She will go inpatient for chemo next week (on December 10th) for five days. I have to make sure to reserve Guitar Hero. For Katie. Yeah, right.

Katie's chorus concert is on Thursday, December 6th at 7:30 p.m. at South Florence High School. Come join us if you can. It's going to be great. I have only hemmed one leg of her pants, so I have to run and do that. She is going to wear her short wig to the concert, so if you don't recognize her....just look for that trademark grin!

Take care, everyone.

Love, Michele

Wednesday, November 28, 2007 6:20 PM CST

Katie had her appointment today with the oncologist. Her pain has actually improved, and she hasn't needed any more narcotics. She had great energy today, and looks awesome.

The oncologist gave her a thorough physical and then we reviewed the scans with a radiologist. Mike, by the way, is very sick, and he has bronchitis and a sinus infection. Katie's cough is actually a little worse so we know her pneumonia is still there. The concensus is that the lump in her shoulder is an enlarged lymph node, but not that enlarged. Compared to the lymph node that was removed last February, this one is tiny. It feels nothing like the one that was filled with cancer last February, and the radiologist says that everything that is appearing on the chest CT is more characteristic of pneumonia/infection than a malignancy.

So, now I feel like the girl who cried wolf. Except this wolf is a real beast, and this is typical of neuroblastoma. Our plan is back to the same - another week of chemo starting December 10th, then contact CHOP about starting a drug like the ABT-751 she was on last year to keep her stable for as long as possible.

Thank you everyone for your notes and prayers. We really appreciate them.

And if anyone wants a roller coaster ride, skip Six Flags and move in with us. Life in our house is more heart pounding and nausea inducing than any ride there.

Love, Michele

Monday, November 26, 2007 10:10 PM CST

Ramp up your prayers a little...Katie's shoulder is really starting to hurt, and tonight she asked for some narcotics. We can't get into the oncologist until Wednesday afternoon, so I'm a little freaked out right now. Still, Katie went to school all day today and rehearsed for Blue Notes, and then did her homework and went grocery shopping with me tonight. Erika was at skate night, and Katie and I got to eat dinner together and do some shopping. We talked a lot about nothing, and laughed a lot about silly things. When I'm with her, I'm ok.

I'll update when we know more.

Love, Michele

Sunday, November 25, 2007 6:24 PM CST

Hope everyone had a nice Thanksgiving weekend. Ours was busy, busy but we had a great time. Thanksgiving Day was nice. Nanny and Pop Pop made it to South Carolina right on time. We had a fabulous dinner with our first fried turkey, thanks to Greg Brigman! It was the best turkey I have ever served at Thanksgiving, and hate to tell you, Greg, but you are permanently hired and will be frying us a turkey forever!

On Black Friday, Mom and I attempted some shopping. The highlight was after hitting about three stores, we stopped at Krispy Kreme for coffee and a donut and actually had a chance to talk without being interrupted by children, husbands, etc. We snuck out before anyone woke up - and it was insane. We picked up a few things but nothing I actually had on a list. Still, it was great! Katie was very jealous, so I had to remind her how much she liked to spend time alone with me, and that I NEVER get to spend time alone with my mommy, and she understood.

The whole crew went to see the movie August Rush (it was awesome - we all enjoyed it), and then we came home to some yummy leftovers.

Saturday, we headed down to Charleston (again) - it's becoming our second home. We went bowling with Courageous Kidz (had a blast), spent the night in a hotel, had breakfast with the same crew, then went to the Camp Happy Days Holiday Party this afternoon. Everyone kept commenting about how great Katie looks and acts. She was bowling like a crazy girl on Saturday night - real strength. She was hanging out with her girlfriends (I'll post a picture soon), and they were going back and forth between lanes teasing the boys. It was so great to watch.

This afternoon, the same crew ended up at the Camp Happy Days party. We watched Katie play volleyball, and cut up with her friends again. Both girls had a wonderful time - thanks to both groups!

We are home, tired, but Katie of course is looking forward to school.

The news we got on Wednesday has carried us through, but now for the not so good news. On Thursday (Thanksgiving Day), we finally got the news about the last scan. It's not as good as the others. There may be some new neuroblastoma nodules, or they may simply be the pneumonia. I noticed today that Katie kept rubbing her right shoulder, and I kind of feel something there. We may do an MIBG scan soon, or not. What we are going to do is keep with the plan. She needs to go to this concert on December 6th. She dressed up in her outfit for my parents this weekend and looked amazing. Katie wants, and needs, some normalcy so that is what we are going to have the next two weeks!

Take care.

Love, Michele

Wednesday, November 21, 2007 8:20 PM CST

Hi, everyone...Happy Thanksgiving Eve.

Katie went to school with no problems at all on Monday and Tuesday - and very happily. She was so glad to be there and not be in the hospital. It made this morning very difficult - to get up and go back in there. But our day was good!

When we got there, the MRI machine was down, but one of our good friends works in there and she brought us coupons for breakfast, so we headed to the cafeteria. We ate breakfast, went to visit our friends at Nuclear Medicine, then headed back to radiology. Katie had her MRI, then went right to her CT scan (it was across the hall). We were done by 11:30 a.m.

Katie then had blood work at the clinic, and it came back great. Her platelets are back up to 44,000 - which is low but great that she is making her own without a transfusion. Her hemoglobin is holding steady and her white count is soaring because of the neupogen! So, we were allowed to stop that drug, then her nurse said, "So, she's cleared for admission on Monday for chemo." I almost died. This was not the plan. But, so I don't have to make this entry any longer than it already is, we are delaying chemo so Katie can have a life (i.e. can sing her solo part in the Christmas show, go to school, get better from the pneumonia..) She will be admitted on December 10th for the next (and hopefully final) round of ifosfamide/etopiside.

We really didn't want to hang out at the hospital anymore, so I told Katie's nurse (the rockin' Marian) to make sure the docs knew that I really wanted results from the scans today. We had a fantastic lunch with Pat (thanks!) and then headed for some shopping. Finally, about 4:15 p.m. we got the call.

Now, I know you are all reading this and are cussing at me for waiting all this time to tell you the results. First of all, the past week has been tough - not that you can tell by looking at Katie, it's just scan day has become nightmare day for us. I have been very, very worried about these scans, and not because of any physical symptoms. My NB friends know - it can sneak up and take over without any symptoms at all.

We have the results of her head CT and the pelvis MRI. The head CT is clean! The last one showed 3 large tumors (and they were quite obvious on her head). The pelvis MRI shows IMPROVEMENT. Our doctor today told me that they were only hoping for stable - to somehow stop the fast progression six weeks ago. Not only did we stop that stupid cancer in its tracks, there is much less of it than six weeks ago.

I heard the results and smiled. But every time I talk about it, now when I write about it, there are tears - of relief, I guess. Katie's response? "Cool." The plan is now to do one more round of this chemo, then transition into another clinical trial - hopefully some drug that is taken orally so she can have her line taken out - swim a little, take a real shower, have her hair grow back in again - and keep her stable for a really long time (like, forever?).

This is why I scheduled these scans the day before Thanksgiving. Prayer works. And our girl is amazing. Have a great Thanksgiving, everyone! And Shirley - thank you.

Love, Michele

Sunday, November 18, 2007 8:47 PM CST

Katie is home!

Katie was sprung from jail today...we got home in the early afternoon, and I immediately took a nap (yep, me - not Katie!) I seem to have picked up a cold during all of this craziness. She is feeling better - still coughing a lot, but no fever, and pretty good energy. She is debating about school tomorrow. I think Katie is worried she'll have to leave in the middle of the day so we'll see.

This morning, while we were waiting to be discharged, we had a bizarre thing happen. We got two weird crank calls on the room in Katie's hospital room. The first call Katie answered, and a man asked her her name and her age. She told him her name, but refused to tell him how old she was - then she hung up. A few minutes later the phone rang, and I answered. It was a woman, insisting that she talk to "the patient". When I told her the patient was a minor, she said it was hospital policy to only talk to the patient, and that Katie had to have a breathing test. I then said, oh, you are from respiratory, what is your name...dead silence. I hung up, and went to tell the nurses. Turns out four other people on the floor got these bizarre phone calls, but the rest of them turned very nasty. It never got that far with us. People just don't have enough to do. We talked with a police officer before we left. Not the ending to the admission that we thought we would have.

Katie still has scans scheduled for Wednesday, and she came home on an antibiotic. Her counts are recovering nicely, and we are hoping for a calm, happy Thanksgiving. Take care, everyone!

Love, Michele

Friday, November 16, 2007 9:41 PM CST

We finally have a diagnosis - pneumonia. Katie finally got ijnto CAT scan late this morning, and the chest CT definitely shows pneumonia. Katie's white count was up to .5, but her platelets have fallen to 29,000 - still not worthy of a transfusion but almost.

The antibiotic she is on is good for pneumonia, so there has been no change there. She ran temperatures up to 100.8 today, but they have fallen without the assistance of Tylenol, and that's a good sign. I hope she can come home tomorrow, but I seriously doubt it. Sunday will probably be the day - or not. Who knows.

We are headed to bed, after another hour of Guitar Hero. It is really fun! Thanks for checking on us!

Love, Michele

Thursday, November 15, 2007 7:45 PM CST

It was a good/long/bad/fun day.

We dragged out of bed this morning at about 8:30 a.m. I ran to get Katie some breakfast first thing, then we just started to hang out. The first info we got was that Katie's white count was down to less than .1 - which is basically nothing. That was an error - the lab called later and said that it was way up to .3 - still terrible. Katie's temp ran up to 100.4 but then went back down.

At about 10:30 a.m., Dr. Julian (our psychologist) came in to invite Katie to the teen cancer group meeting. She never gets to go because it is on the 3rd Tuesday of each month, and we usually aren't here. So, we got through rounds, headed down to the clinic (Katie with a mask on), and she went to her group and I met with the moms. It was wonderful...we had every range of cancer, time of diagnosis (a week ago, and we were there the longest - 8 years). We laughed, we cried, we talked about religion and faith, we talked about wish trips, and we talked trash about our teenagers - quite fun. It was really just what I needed. Katie had a great time at hers, too, and she met a child from her school, and her grade, who was diagnosed with cancer a week ago. Unbelievable!

After the meeting, we headed back upstairs, but not before Katie was chased by Brandon...hmmm...I'll let her explain.
When we got to the room, they took her temp and it was 99.6. Not five minutes later she told me she was cold, and I looked over and she had the shaking chills. An hour later, her temp was 102.8. Big sigh. She took some Tylenol and a nap, and that's when the fun began.

Marian, Katie's nurse, and Jason, Katie's tech, told Katie to ask our child life therapist (Susan) to get her a playstation and the Guitar Hero game. We've never played that and we had great suspicions it wasn't for us! Anyway, after her nap, we hooked up the game and we had two guitars. Jocelyn and Marian (Jocelyn is one of Katie's other nurses) came in to do some patient education. On the playstation game. Heck, we had to call it something so they wouldn't get fired! Anyway, after Marian's turn, I stepped up to the plate and tried it out. I had so much fun! Jocelyn had played three games and on my first time out, I hit 80% and whupped up on her. Mike had gotten to the hospital by then, and the room was filling up, we were laughing, singing, jamming, having an awesome time. I had to go to get back to Erika, so I handed it over to Katie, who was absolutely great at the game too. When I left, she had a med student playing against her and she was laughing hysterically. It was great to hear that laugh.

When I got home, one of the clinic nurses called (Robin) to say that I was the talk of the staff because I was so good at Guitar Hero, and that I had whupped up on Jocelyn. Yep, my friends, I made this day all about me!

Hours later, I called the hospital and Katie was still playing that game with anyone who stopped by! One small problem, though - at 8:00 p.m., her temp was almost 102 degrees again. Katie was supposed to have a CT of her sinuses and her chest, but CT is so backed up they haven't even gotten to emergencies yet. This is really concerning us. Hopefully they'll get her in tonight soon, but if not, then tomorrow. The fevers are actually coming faster now, and it is hard to watch her shake like that with the shaking chills. She seems fine when we get her temp down.

Katie isn't eating very well, and they are allowing her to drink as much as she can on her own without fluids. This is good so she can get some rest. However, Katie just refuses to drink a lot. Today, I took a 20 ounce drink, split it into five cups, put a dollar under each cup and told her she could keep the dollar if she drank the contents. The rumor that was started then about us was that we were playing drinking games in the room to get our child to drink her fluids. So, if anyone passed our room today, they heard rock and roll guitars and hysterical laughter and who knows what they thought...

We've been having major cell phone issues - they seem to be working when they want to, so if you have called either of us - sorry. It looks like Katie won't get out of there until Saturday at the earliest, but with these continued fevers, who knows. Still, it's great to know she can still laugh and have a blast while being in the hospital.

Well, this update is a mile long and I need to get to bed. Hospital sleep is just now what I call rest. Mike gets the honors tonight, and I'll go back tomorrow afternoon. Take care, everyone.

Love, Michele

Wednesday, November 14, 2007 7:48 PM CST

Hi, everyone.

Katie is now inpatient again at Palmetto Richland in Columbia. This morning, she called from school and had shaking chills and her temperature was climbing. I had court in Marion (where Mike works!), so we passed each other on Highway 76 - me heading to court, and Mike heading to Katie and Columbia. Her temp was 99.7 at school.

By the early afternoon, her temp was up to 100.4. She was really sleepy, but the shaking chills had stopped. I called the clinic, and Mike and Katie headed there. By the time they got to Columbia, her temp was 102.4. She still has a terrible cough, and her counts were horrible. Her white count is .3 ! That is seriously low. Her hemoglobin got below 8, too. Her platelets are fine, though.

Katie has already had a chest x-ray and it is fine (although we don't have an official report yet). They are going to have her get a sinus CT scan tomorrow, and her central line was cultured to see if there is an infection there.

I picked Erika up from school and brought her to the hospital. I'm going to stay tonight and Mike is taking Erika home as I type this. Now after all of this, how do you think Katie is? Sassy, mad as a hornet at me for even calling the doctor, and "I'M FINE, MOM!" Her temp is down (thanks to some Tylenol), and she is about to get tanked up with a pint of blood.

If all of these tests pan out to nothing, then this will be chalked up to neutropenic fever (her white count got very low, her body doesn't like it, so it runs a fever). Unfortunately, she won't be out of here for probably 48 hours. That's why she is mad as a hornet. Katie has two field trips to choose from on Friday, but it looks very doubtful that she will be out of here by then.

So, here we are...this is a very common side effect of chemo, but believe it or not, in 8 years of dealing with this, if it is neutropenic fever it is the first time she has ever been hospitalized for that. Her body typically handles having low counts very well. However, each round of chemo and each radiation treatment hammers her bone marrow some more, and we are assuming she has bone marrow disease as well (given how extensive the disease was in her pelvis - this has NOT been confirmed by a bone marrow aspirate.)

Take care everyone.

Love, Michele

Tuesday, November 13, 2007 6:52 AM CST

Hi, everyone.

We had a good weekend, although Katie was exhausted. She had a lot of plans for us on Saturday. We made it through a couple of things, but then we headed home - she was just too tired.

On Sunday, she slept in and then got up in the afternoon to go to see The Nutcracker at the Florence Little Theater. We knew The Sugar Plum Fairy and she did an awesome job - it was really beautiful and we all enjoyed it.

Yesterday, Katie went to school, sang her part in the Veterans Day assembly with the Blue Notes, then called me at about 11:15 a.m. - she had been dizzy and her stomach was hurting. She didn't want to come home, though, just needed a little anti nausea medicine. She went back to school and finished out the day with Blue Notes rehearsal in the afternoon. Her strength amazes me.

We are getting ready to head to school again today. Just like any other day, except our girl has cancer and she just finished chemo. When I went to the school yesterday to drop off her medicine, I saw a bunch of teachers and staff and they were all complimenting her on her singing and laughing that she wanted to stay in school - most kids would be heading home with the complaints Katie had - but not her. It made me really proud, and also kind of sad.

Have a good week everyone. We will do blood work on Thursday.

Love, Michele

Friday, November 9, 2007 8:10 PM CST

We are home! We left the hospital at 3:00 p.m. Katie's blood pressure last night climbed to 197/120...all the while she had no headache, no dizziness, nothing...her nurse said she was sure her head was going to pop off. They ordered some blood pressure meds, by the time it got there at midnight, Katie's blood pressure was normal.

This morning, she had her first renal ultrasound in seven years. It went fine, but it showed that her right kidney is almost completely atrophied, and her left kidney has more than made up for it in size. The right side still has some function though. Katie lost the use of the upper lobe of her right kidney almost eight years ago during the surgery to remove her tumor. Was this the cause of the high blood pressure? Who knows...

We went out for dinner tonight and for a little shopping. Katie bought these cool black boots and stomped around in them the rest of the evening. Now it is bedtime! She has a list of things to do a mile long tomorrow. I hope her energy holds out. I can't believe Thanksgiving is in two weeks. I scheduled Katie's scans for the day before Thanksgiving, so we should know how this chemo has affected the new tumors by then. I figured whatever the news, then we have a lot to be thankful for anyway on Thanksgiving Day.

Take care, everyone - have a good weekend.

Love, Michele

Thursday, November 8, 2007 7:09 PM CST

Hi, everyone. Another boring day! When we were discussing this chemo regimen with Katie's doctors, all we heard about was how sick it would make her, and that her quality of life would be terrible. Well, sure, we're stuck here in Columbia, and it's no fun to be in the hospital, but so far, so good.

Thanks, Grammy Mason for dinner. I know Katie didn't eat much, but she enjoyed what she had, and so did I!

As I'm writing this update, Katie's blood pressure is shooting up. She feels fine, though. I'm starting to wonder about her kidneys. She only has 1 1/2 but they have always worked fine. Her nurse is on top of it, and she is calling the resident...I'm sure everything is fine.

We hope to be home by late tomorrow afternoon! Take care, everyone.

Love, Michele

Wednesday, November 7, 2007 4:52 PM CST

Sometimes, to gain perspective, I read over the last few days or weeks of journal entries. I just did that, and I'm starting to cry a little now. To think that a month ago we were considering stopping treatment and just allow the disease to take its course makes my stomach hurt.

I asked Katie's doctor yesterday if he was surprised at her response to this chemo. He said nope! I was kind of shocked, because I'm surprised! His response...we're talking about Katie here...of course she responded...but the question is for how long. Katie's disease comes back stronger and stronger, and in different places each time.

I've been listening to Chris Rice a lot lately. I love his music. And for someone who enjoys pop music, 80's and even 70's heavy metal, this is unusual. He has a song called "Tick Tock." And one of the lines goes, "Tick Tock, it's Now O'Clock..." This is the chorus:

"Tick-tock, the past is locked
The future’s far away
You can’t go back, you can’t hurry it up
You gotta learn to live today
Tick-tock, it’s now o’clock
The little hand is ours
The second hand sweeps us around
And the Big Hand has the power
The Big Hand has the power"

(I copied this from: http://www.lyricsmania.com/lyrics/chris_rice_lyrics_9220/amusing_lyrics_29757/tick_tock_lyrics_323433.html")

So, we are enjoying today...even though Katie was hooked up to chemo, we have to tag team parent, work drove me crazy...there was no pain, no vomiting, good food and lots of laughter!

Have a good one!

Love, Michele

Tuesday, November 6, 2007 7:23 PM CST

Katie, Michele & Marian here...Marian is Katie's nurse tonight.

MOM: We had a nice, boring day! No complications, other than some more high blood pressure, but not as high as last time. Chemo ran without a problem, no vomiting, and we've had a nice evening.

MARIAN: (Too busy listening to Katie's lungs..)

KATIE: (Too busy behaving for Marian...)

MOM: Katie wants to thank Emma, Pat & Joel for bringing dinner last night and tonight. No hospital food for princess.

MARIAN: I'm really excited I get to take care of Katie on my first week back on nights. Last night, when I was in here, all of a sudden Katie yells out, "They are wearing man panties!" They were watching wrestling...it was insane! That's how taking care of Katie goes...

MEAGAN: (Our tech just walked in)...I broke the television...tell everyone that.

KATIE: Meagan broke the TV, MOm. Meagan - you wear man panties, you stinkin....

MOM: There is complete insanity in this room now because Jocelyn walked in (another one of our favorite nurses), and started something with the man panties and screaming....hmmm...

KATIE: I'm very mad at you, Mom.

MOM: Why?

KATIE: Because you want Marian and Jocelyn to TP me to the bed.

MOM: Katie, don't be mad at me. I love you so much. Did Daddy snore last night?

KATIE: I don't know, I was sleeping.

MOM: Anything else you want to say?

KATIE: No....I'm good.

Thanks for checking on us. Things are boring and that means good. I'm just so thankful for no pain, no vomiting, good attitude (kind of cranky but I love that!), and good appetite. Have a great evening, everyone.

Love, Michele, Katie, Marian, Meagan, and Jocelyn

Monday, November 5, 2007 6:00 PM CST

Katie was admitted today for chemo...her counts have rebounded nicely, and all are well above the lower limits to start chemo. I've been in touch all day (Mike is there tonight), and she is in a good mood, although still coughing. Katie would not overload on the fluids yesterday - that's a complete understatement. Katie never drinks, and we have to beg her to even drink 8 ounces in a day, but now she is well behind in her hydration. So, she's on her second bag of fluids and they haven't even started chemo. Depending on the schedule, she may end up staying until Saturday. She apologized to me, but my theory is that the only control she has in her life is what she puts in her mouth, so she just doesn't drink. That, plus she hates to go to the bathroom at school...wicked cycle.

Katie's contact info is below on this website. She's in Room 1024 at Richland in Columbia. Take care, everyone!

Love, Michele

Sunday, November 4, 2007 6:31 PM CST

Hi, everyone. We had a nice weekend. The girls and I went to see Disney Princesses on Ice. It was really beautiful. The weather has finally cooled down! Katie had a good weekend health wise, although she has developed a wicked cough. She's had no fever, or any other problems, though.

Tomorrow, as long as her blood counts are high enough, she will be admitted for Round 2 of ifosfamide and etopiside. Katie will be inpatient all week getting these two chemos. We hope everything goes as smoothly as the last time.

I am not prepared for her to be inpatient and I have to run and try to get packed. We took too much stuff last time, so I'm trying to pare it down a little. Mike is going to stay with Katie tomorrow and tomorrow night as I have court on Monday and early Tuesday morning. Erika and Katie have been battling all weekend, so it will be interesting to see if they miss each other this week!

Take care, everyone.

Love, Michele

Thursday, November 1, 2007 3:40 PM CDT

Hi, everyone!

Let's see...what's happened since Sunday....

Katie is feeling pretty good - cancer-wise. She has developed a sore throat and on Tuesday she was running a low grade fever, so she stayed out of school, rested, and felt a little better. Wednesday was a half day of school, so she went to school and came home to rest before Trick or Treating.

We had a lot of fun Trick or Treating - Erika ditched her costume she picked out for this year (Major Flirt - so appropriate - a military girl outfit that was really cute) to be the same witch from last year. Katie was a vet -just like the pictures I posted on her website before. They went with another friend, Hayden, who is 12 years old. Hayden and Katie casually walked through our neighborhood, but Erika sprinted to every house, even in these high heel boots she was wearing. It gave me heart failure. We now have enough candy to feed a Third World country.

Katie had her counts done yesterday, and they are inching upward. Her white count, ANC and hemoglobin are all doing well (Kathy Elmore - that means she can fight infection and she has energy), but her platelets were 55,000 (KE - that means she could bleed a lot if she got cut). Still too low to start chemo. So, Katie is scheduled to go inpatient on Monday, November 5th to start the next round of chemo, and we plan to have a fun weekend.

We are hoping that since all the pain has gone from the tumors that means that Katie, the chemo and the radiation have beaten the beast back again. Stupid neuroblastoma. In the meantime, we are losing children to this nasty disease daily and it is so not fair. There is a group of parents raising money for a new treatment at Sloan Kettering. The website is www.bandofparents.org. There is a gift shop, and some really cute things to buy - the artwork is created by neuroblastoma kids. I love Danielle's frog (but every child's creation is cool!) Anyway, lots of things on this site would make great Christmas gifts, and would help kids in Katie's situation, so feel free to buy away!

Take care, everyone!

Love, Michele

Sunday, October 28, 2007 9:28 PM CDT

Hi, everyone. Since Katie had the blood transfusion on Thursday, things have been going very well. She had a great day in school on Friday, then danced the night away that evening at a school dance. Saturday, we had Erika's birthday party at FunDayGo (an indoor inflatable place). It was awesome! I hope everyone had a lot of fun. Erika woke up this morning, crawled into bed with me, and said, "Can we rewind to yesterday, right before we left to go to FunDayGo?" It was definitely a celebration worthy of a decade birthday!

Katie had a great time at the party too. She played just like everyone else - maybe a few more breaks, but if you weren't watching carefully, you would never know. Yesterday evening, we went to the Miss Florence pageant. We were so tired, but we went anyway, and I'm glad we did. Katie, and the other cancer survivors on the audience, were honored during the pageant. They went on stage with one of the contestants, got a flower, then a wonderful gentleman with a great voice sang "You Lift Me Up". The entire time, Katie was looking at me, and mouthing, "Don't cry!" This is a song that was played during my mother-in-law's funeral - it was one of her favorites, so of course I cried! At the end, I started a standing ovation for all those cancer survivors. Katie was the youngest, and one of the longest survivors.

Today, we spent most of the day cleaning Erika's room (a real project), and doing all kinds of errands. Katie is so funny - her legs and bottom are very, very sore from all the climbing on the inflatables yesterday, and she was walking around like an old woman. We laughed about it all day. She continues to feel good, and is excited about school again tomorrow.

After such a nice weekend, we learned of the house fire at Ocean Isle Beach. I have spent time at OIB, and it is a wonderful place. Please keep these families in your prayers as well. I know the horror of what we go through, but just imagining the terror these college students felt, and now what their families are going through...it just humbles me. Our thoughts and prayers are with everyone touched by this tragedy.

Love, Michele

Thursday, October 25, 2007 6:29 PM CDT

Katie and Michele here....

This is attempt #2. The first attempt was VERY boring. Katie is blaming me for being boring. Her comments as I type are in quotes.

Yesterday, she came home from school because she was very tired. "Having fatigue..." She took a long nap in the afternoon, and went to bed early. We headed to Columbia today for blood work, and Katie's platelets slightly improved, her white count is soaring (because of the drug she is taking), and her hemoglobin stayed the same - pretty low. So, we tanked her up with a pint of blood to make it through the weekend.

(Katie is now watching TV and paying no attention to this update). She got tired getting blood because our clinic pre-medicates with Tylenol and Benadryl, so she got very drowsy. Tonight, she seems a little bit more energetic.

"I am TOO paying attention!" Yeah, right. Chemo is not going to start on Monday. Katie's platelets are just too low right now, and probably won't recover by Monday to start. So, we are going to do blood work in Florence on Monday, then possibly have her admitted on Thursday for chemo. That works out better with my court schedule, and with Halloween - now we can trick or treat without being in the hospital.

Katie is going to school tomorrow, and there is a dance tomorrow night. Want to say anything, Katie? "Not really, about what?" "Create a subject, I'm bored..."

MOM: Let's talk about iPods. How is your new one?

KATIE: It's fine. I can play my...I got a song on it from a long, long time ago and I can play the video...

MOM: Great. Can I have your old iPod?

KATIE: Yes.

MOM: When?

KATIE: At Christmastime, because I don't know what to get you for Christmas...I know you want that shirt from Best Buy?

MOM: Shirt from Best Buy? That donated blood rushing to your head and making you crazy?

KATIE: That's not funny. You know that one you wanted with two buttons.

MOM: It's a sweater, and it's not at Best Buy.

KATIE: Oh...ha ha ha...I knew that.

MOM: So, I have to wait two months to get a used iPod? Could that be because you can't find the floor in your room, and your old iPod could be underneath the disaster?

KATIE: Hm....yes..but if you keep on complaining you aren't getting anything, and I'm selling it on eBay, somehow..

MOM: HA HA HA. That means you have to actually find it first! Want to say anything else...how are you feeling?

KATIE: I love my iPod. I am feeling fine. Thank you for the messages on my guestbook, and thank you for all the prayers.

Good night, everyone.

Love, Michele

Tuesday, October 23, 2007 9:10 PM CDT

Hi, everyone.

No news is good news, kind of. Katie continues to defy expectations. She has been in school on Monday and Tuesday, feeling fine, although she shouldn't be..

Her counts on Monday were a mixed bag. Her white count is rebounding nicely, and her ANC is a respectable 2,000 (last Thursday it was 10, so she has come a long way). However, her hemoglobin is down to 7.4, and her platelets are only 22,000. Instead of going to McLeod on Thursday for blood work, we are going to Columbia, because we expect she'll be getting a transfusion of red blood and platelets then. Then again...we are talking about Katie. We'll probably drive 1 1/2 hours one way for blood work that is perfectly fine.

If Katie's hemoglobin and platelets rise, she can start chemo on Monday again. That means another week inpatient, and missing Halloween. We have some plans where that is concerned, but I have a gut feeling that she won't be getting chemo next week. Katie is not in any pain, and she isn't falling asleep at inappropriate times or dizzy due to low hemoglobin. She isn't have nosebleeds, and her gums aren't bleeding. I still can't get over how well she is doing, but I'm happy about it!

Erika's 10th birthday is on Saturday. We are having a huge party at FunDayGo, an indoor inflatable place, and I am nowhere near ready for it. She is so excited, though. Take care, everyone!

Love, Michele

Sunday, October 21, 2007 3:59 PM CDT

We had an amazing weekend!

Due to scheduling problems, Erika's last soccer game and her trophy party were this weekend too. She wanted to stay here, so she spent the weekend with two friends...thanks Barbara, and Nancy...she had a wonderful time and Nancy, you were right...for once she wasn't just Katie's little sister. And LOVE the pink racetrack!

So, Mike, Katie and I headed to Charleston for the weekend, thanks to Happy Days, for a Dream Date. We met up with the Amys (Amy Van Pinxton and Amy Etheridge - both from Happy Days), at Charleston Place Hotel (amazing hotel), and headed out in our white stretch limo to California Dreaming for lunch. Then, it was on to Target for an amazing shopping spree. Let's put it this way, once Katie bought herself a brand new 3rd generation 8 GB blue iPod, she still had enough money for toys, clothes, stuffed animals and makeup. Wow. Then we went on to Kiln Time to paint pottery. The whole time we had this white stretch limo. Amy E is the new director of Happy Days and she was so much fun. Amy V is a nut. Literally. She is so sarcastic. While we were painting pottery (everyone was concentrating on their artwork), she was making sarcastic comments about the other people in the store. Then, on the way back to Charleston Place, she had a blast pointing at a bunch of people crammed in a cab, and here we are in a stretch limo. We laughed and laughed all day. Katie was in a great mood (ok, who wouldn't be?) and she felt great.

When we got back to the hotel, the girls dropped Mike and me off. Then, they went back to Amy V's house to have a sleepover with 5 of Katie's buddies from Camp Happy Days. I haven't heard too much of what happened, other than Amy and two of the girls begging me to let Katie stay with them. They had a blast, although Katie did put herself to bed at 2:00 a.m., and the other girls stayed up all night.

We got to go to Cypress for dinner - an incredible restaurant in Charleston. We also had chocolate covered strawberries in our room, and this morning the best room service breakfast ever. Katie came back in the late morning, and we headed over to Hyman's for lunch. We ate there last year with Flash on Katie's Courageouz Kidz dream date, and went there again, because everyone wanted to see Katie. We found out that Katie's picture is hanging on the wall, on the second floor, outside the bathroom - she's hugging Eli. So cool! There are celebrities on the wall! When we got there, the entire staff of Hyman's came out onto the sidewalk to greet us. Katie is such a rockstar!

Thank you to Amy Van Pinxton (this weekend wouldn't have happened without you), Amy Etheridge, Happy Days & Special times, Dixon-Hughes accounting firm, Lee Limousines, Flash, Hyman's Seafood, Phyllis, Eli, God, and the weather (what a gorgeous weekend). It was exactly the getaway we needed.

Katie is back to feeling like herself, and is totally psyched to go to school tomorrow.

Love, Michele

Saturday, October 20, 2007 6:05 AM CDT

It's been a very quiet couple of days. Katie has been taking naps, reserving her energy, running low grade fevers, and having a bit of a sore throat from the thrush.

This morning, she woke up happy and ready to go, so we are keeping our weekend plans. It's going to be AWESOME. More tomorrow!

Love, Michele

Wednesday, October 17, 2007 3:57 PM CDT

Well, it's not cancer that has slowed Katie down, it's the chemo...

This morning, Katie woke up with a very sore throat, a low grade fever, and white and black spots all over her mouth and throat. It looked like thrush to me, but I've only seen it once, so we headed to Columbia. Katie's doctor took one look, said it was thrush, gave her a prescription for Nystatin and sent us on our way. While we were there, Katie's favorite nurse drew her blood for counts. She called fifteen minutes after we left, and gave us the bad news: Katie's immune system is basically gone!

Katie's white count was .2 and her ANC was 10. Anything below 500 for an ANC means no school, no crowds, no sick people, no restaurants, no stores - HOUSE ARREST. Well, 10 is a lot below 500! Her hemoglobin is 8.3 and her platelets were 45,000...both low, but not transfusion level yet. When Katie heard this, she started to cry - and not softly. She screamed and cried from about Camden to Darlington. She wanted a transfusion (can't do that with white blood cells - that's why she's on a drug called neupogen to boost her white blood cells, it just hasn't kicked in yet), then she blamed me (it's all your fault, Mom), then she just cried and cried. She cried more about not being able to go to school tomorrow than she cried over hearing her cancer had progressed. I asked her gently not to blame me..she can take this out on me, that's fine, but please don't blame me.

She's going to miss a field trip to see the South Florence Choraliers (the Blue Notes of high school), she's missing taking an accellerated reader test she needed to have done today, she missed a vocabulary test, and tomorrow she'll miss her JTI meeting.

Everyone agrees that her white count will rebound on neupogen and by Saturday, it will be good enough to go out again, so our weekend plans won't be ruined. I hate this for her, and she is not happy right now. But I am also proud of her - she loves school, her friends, her teachers, and she just wants to be normal. Hopefully, she'll be back in school next week for the entire week.

With Katie's counts so low, if she runs a fever (higher than the low grade fever she has now), she will be admitted to the hospital. So, start praying for no fever; for this house arrest and the neupogen to start working and get those white cells in her blood back up; and for the painful thrush to be gone.

Take care, everyone.

Love, Michele

Monday, October 15, 2007 6:28 PM CDT

Hi, everyone.

We had a quiet weekend, but it was nice. Erika's game ended up canceled, so we watched her practice, then watched a little bit of Garrett's game. We went out for lunch as a family, and headed home for some rest. Sunday was fine - church, a little shopping, then home. Katie was tired, but ok, until Sunday. Yesterday, she started to have diarrhea that continued until the middle of the night.

This morning, she just couldn't drag herself out of bed. I usually get her up before Erika so she can take her time and make some breakfast. Plus, we had to go to McLeod for blood work. Well, we made a deal that I would e-mail her teachers that she wasn't coming to school, she would sleep in, then I would pick her up at lunch time for blood work and to come back to my office.

That lasted about 15 minutes. Next thing I know, she is up, dressed, and tells me she is ready for school. Huh? So, I e-mailed Katie's teachers, told them she was on the way, and asked them to please keep an eye on her. We did the blood work at McLeod and she skipped off to school.

I had a trial to prepare for, but I was distracted all day worrying about her. Why? I don't know...maybe because a week and a half ago we were told that we could go home and eventually contact hospice, or maybe because last week she was inpatient all week getting some horrendous chemo, or maybe because she is EXHAUSTED and had diarrhea all day yesterday.

Never heard from her - all day. I got an e-mail late in the day that she had a Blue Notes performance this evening (they sang the national anthem before the APT meeting at 6 p.m.), so I knew I had to run her outfit to her at school. Great! An excuse to see her and make sure she is ok! I get to the chorus room, she literally runs across the room to greet me, laughing and having a great time. Then she sang, we ran to Erika's rescheduled soccer game, and we have just gotten home. She has some math homework to do and then wants to go to bed. Ok, Katie, sure...go ahead. AAAHHHHH...whatever she has, I want to bottle it, make a lot of money and quit practicing law!

This cancer will drop the other shoe sometime...it always does. But for now, Katie has literally told it to kiss off, and she is living her life! I love it!

Have a great week, everyone. I hope this continues because we have an incredible weekend planned, and I'm not gonna spill it because I want it to be wonderful...

Love, Michele

Friday, October 12, 2007 6:34 PM CDT

It is about 7:30 p.m., and KATIE IS HOME! She is tired, quiet, but when I look at her she flashes that grin. Tomorrow we are planning on going to Erika's second to last soccer game and who knows what else. We'll see what Katie can handle. Right now, she is parked in front of the TV, watching all the shows she taped while she was inpatient. Life is good!

Take care, everyone.

Love, Michele

Thursday, October 11, 2007 7:39 PM CDT

ELEVEN YEARS AGO TODAY...

Katie moved in. This is Gotcha Day! It was an amazing day. There's a great picture of it in our living room. Everyone is happy, but I know as we left Monika's house, there were tears on her part. She was Katie's foster mom, she is Katie's first mom, and she will forever be a part of all of our lives. Thank you, Monika, for giving her a great start in life and for loving her to this day. And the rest of the Studley/Dove family, too!!

EIGHT YEARS AGO TODAY...

Katie got her first dose of chemotherapy ever. It was cisplatin - a nasty icky chemo that came in an upside down glass bottle. We were warned that she would most likely get very sick, even the anti-nausea meds might not help. Katie drank coke and ate M&M's while she got the chemo. She toured the unit in this little yellow and red car with me chasing behind her with the IV pole. On carpet. Fun. Shanon, one of her first and favorite nurses, made her a Poke-E-Mon cake to celebrate Gotcha Day.

TODAY....

Katie's blood pressure got to 183/116. She had no headache, or anything else wrong with her. I'm going to put a quote here and for everyone that knows Katie, use her tone of voice, "Mom, for the millionth time, I don't have a headache, I'm not dizzy, and move out of the way, I'm trying to watch TV!"

Mike told me a funny that happened yesterday...her doctor came in to check on her, came back out of the room (Mike was in the hallway), and started heading toward the playroom. Mike asked him where he was going, and he told Mike that he was looking for Katie and he was sure she was in the playroom. Mike told him that Katie was in the room. Nope, doc said, she's not. Mike said...was the IV pole and pump in there? Yep, sure was. Well, she's attached... They walked into the room, there's the pump and pole, and the IV tubing running into...the closet.

This morning, with me, same doc came in with the usual entourage of med students, interns, residents, nurses and pharmacists...took one look at Katie (who was under the covers and hadn't had time to climb in the closet), and said, "Good bye..I'm going to check on sick kids..."

When I left, Katie's blood pressure was fine (Mike is staying tonight). She is getting progressively more tired. But hey - tired we can take. She is now off all pain meds, and is feeling good. Tomorrow, Katie will come home barring any unforeseen complications. Having said that, who knows what will happen tomorrow! She will start chemo at 6:00 a.m., and finish up all her IV meds by 4:00 p.m.

Katie was to have a bunch of visitors all night long, so I hope she had some fun. Erika has been good again, and is anxious to have sissy home. I could never have predicted how smoothly this week would go...we are thrilled. There are many children not enjoying the same kind of week. Little Lucas is progressing so fast that his parents are reeling...his website is www.caringbridge.com/visit/lucastran. We have certainly felt your prayers this week, and if you could send some by way of the Tran family, we would appreciate it.

Take care everyone!

Love, Michele

Wednesday, October 10, 2007 7:27 PM CDT

Another good day! I got here at about 11:00 a.m., with brunch. Katie wanted an omelette from Huddle House (where she gets these cravings is beyond me), so I got one and headed into the hospital. When I got here, she was quiet, had finished radiation, and was ready to eat. Mike left a little while later, and she spent some of her day giggling on the phone with one of her friends, and having a bunch of visitors.

The only blip today was some high blood pressure. In true Katie fashion, when she was having these high blood pressures she was smiling and talking like nothing at all was wrong - no headaches, no nothing. She isn't retaining fluids (her input is equaling her output), and it only happens right before and during her first chemo. The etopiside is supposed to give her low blood pressure, but not our Katie! Her blood pressure came down a little while later and now it is normal. Katie took a very long nap this afternoon.

Her pain is practically gone. She had her remote control car out and was hiding around the nurses station torturing them with the car, and she was all crouched down. Last week she never would have done that. Her radiation is finished, and only two more days of chemo. Hopefully, Katie will be home in her bed on Friday night.

Thanks to all our visitors today (except for Elizabeth, and you know why!), phone calls, prayers...it is amazing to see what is going on here. We do not know if this chemo is working, but we are grateful for no pain, little side effects thus far with the chemo, and a comfortable week in the hospital.

Tomorrow's update may include that Katie was TP'd to her bed...she was kind of nasty (in a funny way) to her tech today (Jason), and he has vowed to get her back by toilet papering her to her bed while she is sleeping. Tiffany, her nurse, threatened to add saran wrap. Every time there was a knock on the door, Katie would say, "Come in if you aren't Jason!" And believe me - Jason did nothing wrong!

Elizabeth gave Katie a card today, and it sums everything up:

"When it seems everything is falling down around us, something strong and certain within us is preparing to spread its wings and soar.

I've seen you meet challenge and setback with wings of your spirit outspread, transforming your pain into power, courageously moving ahead....

So as you continue your journey, remember what I know is true - You'll once again rise on the wings of your soul more graceful, more joyful, more you!"

Take care, everyone!

Love, Michele

Tuesday, October 9, 2007 9:24 PM CDT

NEW PICTURES ON THE PICTURE PAGE!

Monday night was quiet and peaceful. Katie's first dose of the two chemos, along with a blast of radiation, did NOT give her a rough night, thank goodness. I know she got up to go the bathroom, but she barely made a peep. I was reading to her at about 10 p.m., and I was the one falling asleep!

Katie slept in until about 9:00 a.m. I had to leave as soon as Mike got there and she was not happy about it. I stayed in touch the rest of the day and Mike reports that she took a good long nap at the end of the afternoon, and she ate a good lunch and dinner. She was quieter today - something we were told to expect as each day passed. Katie and Mike went on a few walks in the hallway, and she had some fun with a volunteer and with her Godmother who stopped by with dinner. Her pain has lessened quite a bit, and tomorrow will be her last dose of radiation.

Thanks to Katie's 2nd period science class - that was a cute video you sent! She watched it tonight - I forwarded it to her e-mail address. Katie has her own e-mail address. She is pretty bad about checking it, but she still likes to get e-mail: katiecakes525@yahoo.com

Also, Katie is in Room 1026 at 5 Richland Medical Park, Palmetto Richland Memorial.

Erika has had two good days at school, and she has given us no problems at home. She had a special treat today when Ms. Nancy picked her up to take her to dinner and to soccer. I got to watch the game, too. Unfortunately, the team lost and we told Katie that it was because she couldn't be there. Erika has two more games this season - one on Saturday at 11:00 a.m. and another on Tuesday at 6:30 p.m. We are hoping Katie can be at those games!

So far, so good...I'll update tomorrow!

Love, Michele

Tuesday, October 9, 2007 9:05 PM CDT

Monday night was quiet and peaceful. Katie's first dose of the two chemos, along with a blast of radiation, did NOT give her a rough night, thank goodness. I know she got up to go the bathroom, but she barely made a peep. I was reading to her at about 10 p.m., and I was the one falling asleep!

Katie slept in until about 9:00 a.m. I had to leave as soon as Mike got there and she was not happy about it. I stayed in touch the rest of the day and Mike reports that she took a good long nap at the end of the afternoon, and she ate a good lunch and dinner. She was quieter today - something we were told to expect as each day passed. Katie and Mike went on a few walks in the hallway, and she had some fun with a volunteer and with her Godmother who stopped by with dinner. Her pain has lessened quite a bit, and tomorrow will be her last dose of radiation.

Thanks to Katie's 2nd period science class - that was a cute video you sent! She watched it tonight - I forwarded it to her e-mail address. Katie has her own e-mail address. She is pretty bad about checking it, but she still likes to get e-mail: katiecakes525@yahoo.com

Also, Katie is in Room 1026 at 5 Richland Medical Park, Palmetto Richland Memorial.

Erika has had two good days at school, and she has given us no problems at home. She had a special treat today when Ms. Nancy picked her up to take her to dinner and to soccer. I got to watch the game, too. Unfortunately, the team lost and we told Katie that it was because she couldn't be there. Erika has two more games this season - one on Saturday at 11:00 a.m. and another on Tuesday at 6:30 p.m. We are hoping Katie can be at those games!

So far, so good...I'll update tomorrow!

Love, Michele

Monday, October 8, 2007 5:49 PM CDT

Note for my parents: I got your call today, but we were at radiation and my cell doesn't work around all that equipment. I didn't get your message until around 6:00 p.m., too late to call you. Hope you are having a blast on the cruise, everything here is fine!!!!

As I am writing this, Katie is getting her second chemo - ifosfamide. The day has been surprisingly good pain wise but also emotionally. We had typical times of our 13 year old being a pain in the neck, but with all the visitors we've had, the day has flown by.

We got here at 9 a.m., but Katie's fluids didn't start until noon. Then, we went back down to radiation, and because she had to have another simulation (we are back to only radiating that painful left hip), it took from 1:30 p.m. until 5:00 p.m. Mike had to bring us a piece of pizza to eat while we were waiting!

I feel like we are almost living in denial. It has been such a good day for her - very little pain, lots of fun, and lots of friends...but we know what the reality is and what Katie is facing if this doesn't work. Still, as I have said from the beginning, I get my strength from her and she is SO STRONG. Thanks to everyone that came by, called and made her smile today. It was awesome. We even had communion with a wonderful man from Our Lady of the Hills parish here in Columbia. God is good!

Hopefully we'll have a smooth night. There's no reason to think we won't. We did have one blip today...we were waiting to get back into radiation and ended up in a holding area with a prisoner, a couple of guards, and two ladies who were not with the prisoner and the guards. One of the radiation nurses walked by, and yelled out hello to Katie, and the one lady turned to the other and said, "Oh, that's a girl!" as if she was so surprised. Katie was covered in a blanket, and wasn't wearing her bandanna. The lady whispered this comment, but everyone heard it - I wanted to turn around and say, "Oh, and she's not deaf!" but I restrained myself. Katie never acknowledged it until later, and it just made me sad that she had a dark moment in an otherwise good day. She decided to make up responses even though the women were no longer around us, so we had a good laugh about it.

Keep up the prayers - it is working! Take care, everyone.

Love, Michele

Friday, October 5, 2007 7:45 PM CDT

Katie started radiation today (again), and today we made a new plan.

Unfortunately, CHOP has nothing to offer us right now. The consensus among the doctors is that Katie's disease has taken off, is out of control, and everything that CHOP has to offer is for kids whose cancer is not multiplying at a scary rate. But, our doc at CHOP had an idea: chemotherapy consisting of ICE minus C.

My NB friends will know what this is. The minus C is to keep her eligible for the things CHOP can offer after she makes it through ICE minus C. ICE is ifosphamide, carboplatinum, and etopiside. These are three drugs that are relatively strong and will hopefully knock back this latest progression. The reason we are taking out the carboplatinum is that it really hits the platelets hard, and her bone marrow may never recover, meaning she could not participate on any other clinical trials and we are back at square one. So, we are going to skip that one - but it won't make that big of a difference. The I and the E are just as serious and hopefully just as helpful.

So, on Monday, Katie will be admitted to Richland Memorial for a five day course of chemo. It has to be given inpatient because there can be serious complications, especially with damage to her bladder. So, she's going to need lots of fluids, and a drug called Mesna to help protect her bladder.

I wish I could tell you that this was a "oh, let's do this, it'll do the trick" conversation, but that is not so. Our options have narrowed. We'll see how she does on this chemo regimen. If it has no effect on Katie's cancer, then things are bad again. If it does, then we are back on track.

Mike and I keep looking to our hearts and asking God to help us with these decisions. I have cried more in the past three days than I think since Katie relapsed. But when Katie's doctor and I discussed this option, I just knew it was what we should do. At dinner tonight, Mike and I told Katie about next week. Her questions were simple: "Will the treatment hurt?" Answer: no, it's regular chemo - you'll get sick, have low counts, have to be inpatient... "In Philadelphia?" Answer: nope, in Columbia at Richland Memorial.

Her response? "I'm cool with that."

Katie's pain today was pretty bad, but tonight, after some more pain meds she is much improved (and hopefully even one dose of radiation helped). She will also have radiation next week every day.

This is the condensed version of today. I don't want to extend this anymore. However, I do want to thank some people - one of the reasons I don't usually name people or things we have gotten is that I am sure that I'll forget something. And believe me, I forget everything. Katie is now embarrassed over my short term memory.

But this is what I remember about this week/today: Thank you to....Cely, Myrtle and Lisa for being my rocks at work and personally; Cely, Kathy, Gena, and Rangeley for letting me cry through lunch this week and understanding when I bail on our plans; Michelle for the AWESOME chocolate covered fruit from Edible Arrangements that made Katie's day (ok, and the rest of us because she can't possibly eat all that); Radiation Oncology for giving Katie a gift every single time she has radiation; Radiation Oncology for squeezing us in with 1 day notice; our doctors for listening and taking the time to explain very difficult things to very hysterical parents; Gena's Sunday School class for the gift certificate for our "spa" day; the clients, judges, my law partners and attorneys who put their lives/cases on the back seat so I can deal with this; Beneteau for allowing Mike to be with us; the guestbook messages...and the private prayers..that lift us up every day; and last but never least...God...

Whew. Thank goodness for such a short journal entry! If I forgot to thank YOU for something YOU have done for us, I'm sorry. Thank you.

Take care, everyone.

Love, Michele

Wednesday, October 3, 2007 9:40 PM CDT

The first week of October is not good for Katie and neuroblastoma.

Today, we found out that Katie's disease has progressed even further, and basically, her pelvis is full of tumors. This morning she was in school for 15 minutes before she called me to come get her because of leg pain. We spent the day with Katie getting checked out by a nurse practitioner and oncologist, a regular x-ray (showed nothing), a CT scan of her pelvis (showed nothing), and an MRI of her pelvis (showed entirely too many tumors).

In between the CT and the MRI, I had a devastating talk with one of our oncologists. Since then, we have experienced every emotion under the sun, and our heads are still spinning. Our options are to do nothing, let the disease run its course, and just treat for pain (more radiation), or....well...no one knows about the or...we'll be consulting with the docs in Philly ASAP.

Erika had a terrible day at school, and we had to sit down and talk to her about that and explain that things were about to get very difficult with Katie and she just has to get it together and be a good girl. She sobbed and sobbed on my shoulder.

Katie, though, has been pretty stoic. I've been trying not to dump all this on her at once, plus she's back on a lot of pain medicine, so she's a little loopy. She can still make me laugh hysterically. Her pain is pretty bad, and she doesn't want to go to school tomorrow. Our goal is to get her out of pain ASAP. There will probably be more radiation in the next few days. That's not a problem for Katie because she absolutely loves radiation oncology (they give her presents every single day she has radiation), and it doesn't hurt.

Pray for our girl...things are getting tough.

Love, Michele

Tuesday, October 2, 2007 6:58 AM CDT

Katie finished radiation yesterday. Nanny and Pop Pop left today, but we sure enjoyed their visit. Katie's fever has stayed away, her leg pain is there but manageable, and today, she will hopefully be in school all day for the first time in a week.

Katie has been a cancer survivor for eight years and 1 day as of today. Yesterday was her 8 year anniversary of the original diagnosis of Stage IV Neuroblastoma. I've been trying to come up with something eloquent to say about it. She is amazing, my hero, blah blah blah. But what I really hate is that she has had to live with cancer for well more than half her life now, and it continues to interfere with her regular childhood.

We still have no plan about the next treatment. We are adrift right now and I hate it. Katie probably couldn't start anything anyway until two weeks from now as she just finished radiation. Once we find out our plan, we'll let everyone know.

Take care.

Love, Michele

Saturday, September 29, 2007 1:50 PM CDT

Hi, everyone.

We ended the week with some drama. Friday, Katie went to school, then Mike picked her up for radiation. I picked up Erika and took her to a sleep over birthday party (she had a blast!) Then, I met Katie and Mike at a restaurant for dinner and we had a good time. Afterward, Katie and I went to Target to look for something. She felt warm to me all night, so I bought a thermometer (we are forever losing them), and she took her temp in the car. Big mistake. It was 102.2. That means we call the doctor, and usually it means an admission.

Katie was very, very upset, and her doctor could hear it. She advised us to head to McLeod's ER, and she would call ahead. We did that, and we had a very good experience there (again). They whisked us almost right back to a private room, and did a pretty good job at dealing with what was going on. There were some blips - no one seemed to know how to deal with her central line but I came loaded with supplies just in case (good thing). They couldn't understand how Katie didn't have brain cancer, yet had tumors on her head...still, we had a nice nurse who tried really hard, and a nice doctor.

After the full workup, the diagnosis was a urinary tract infection. She got a dose of antibiotics, and we were home in three hours! Really, a miracle considering we were checked in, had a chest x-ray, they ran a CBC (complete blood count), a urinalysis, and she got a dose of antibiotics by IV in that time.

At dinner, Katie told me that her leg hurts. By the time we got to the ER, she was limping pretty badly. This is either pain from the urinary tract infection, or from a new tumor maybe on her pelvis. So, we started her back on some good pain drugs and she is feeling a little better.

In a few minutes, we'll head back to McLeod for another dose of antibiotics. Luckily, the same doctor is on so we have to go and ask for him, and he gave us a prescription basically to go to the head of the line.

Katie was pretty upset last night. She cried pretty hard, asking why her, and telling me she wanted to be normal. We talked for a long time, and we decided she didn't want to be normal (boring), just healthy. Can't argue with that. But she had a little cry, and was great at the ER. She told me at the ER that at least we got to be together and watch some TV together. On the way home, we called my mom and she told her she missed her and wanted her to come see her soon. Katie does this pretty regularly. This morning, we found out that Nanny and Pop Pop are on their way to visit us from Florida. Katie told me this is a very good day.

So, I'm off to the hospital with Katie to get another dose of antibiotics, and I pray this experience will be as good as last night's. I got to watch Erika play soccer today, and she didn't score, but she really, really hustled. She can run like the wind!

Take care, everyone.

Love, Michele

Wednesday, September 26, 2007 9:14 PM CDT

We had a long, long day today. Katie and I took Erika to school, had to run to the pharmacy to pick up some anti-nausea meds, ate a quick breakfast, then arrived at radiation oncology at Richland at 10:00 a.m. to meet with Katie's doctor. Then, at about 11:45 a.m., we started the simulation. That's where they set up the radiation machine and table Katie lays on and designed her mask.

Because Katie was having radiation to the skull, she had to have a mask made. They "cook" this plastic mesh stuff in an electric skillet, then place it on Katie's face, mold it to her shape, and bolt it down on the table. Sounds creepy already, huh? Well, after that, the remote control for the radiation machine and the table quit working. THIRTY MINUTES LATER - they finally got one to work, and finished up an hour after it started. This whole time, Katie's head is bolted to a table, with a mask over her - she couldn't talk, could barely see...and guess how she reacted...SHE WAS FINE. She was calmer than we were. It broke my heart to see her going through that. No one freaked out and we kept talking to her and she just kept giving us a thumb's up.

The actual radiation wasn't until about 3 hours later, so we grabbed lunch, did a little shopping, and headed back. The actual radiation was fine.

On the next photo page, I have put some pictures of what happened today. THIS MAY UPSET SOME OF YOU. Even Mike was kind of taken aback to see what our little girl had to endure - without complaining the entire time.

The plan is to do four days of radiation - Wed., Thurs., Fri., and Monday. Then after that - who knows. I hope she gets some relief from these tumors. The radiated both sides of her head, in two fields. One had two tumors in the field, and the other one just one. Just pray this works to shrink these nasty things. We can't help wondering if it has spread anywhere else. Katie got up from the table and said, "Die, aliens, die!" Almost funny.

The radiation won't be until late tomorrow afternoon, so she will get in almost all of her classes. Take care, everyone.

Love, Michele

Tuesday, September 25, 2007 10:07 PM CDT

Tomorrow, Katie starts radiation to her skull and our trip to Philadelphia is on hold for now until we get this finished. I don't know how many doses of radiation she will have at this point. What I do know is that a third tumor now seeks to be growing on her skull. She found it this evening. The first one is getting so big - it is unbelievable. I gently asked Katie if I could take a picture, and she turned me town flat. I have to respect that. Then again, we've been joking that it's just a stupid alien and that the stupid alien is having stupid alien babies and that's what the two new tumors are. If we can't laugh at this HORRIFYING disease sometimes, it will have robbed us of everything.

Luckily, we have been laughing a lot. Tonight, I was helping Erika with her homework, and she had to write spelling sentences. She was doing a really good job coming up with her own, but wanted some suggestions from me. I made a suggestion, and of course her other mother (Katie) made a suggestion so Katie and I started battling it out as to who wrote the best sentence. Erika was laughing hysterically, and so were we. Guess what - Erika wrote her own sentence and ignored us!

Even with all these new tumors, Katie still feels great, and looks good, too (except for that nasty bump). Her blood counts are very nice. She has been in school every day, and is actually kind of pleased we aren't going to Philadelphia next week. It's Spirit Week at school and she really doesn't want to miss it. We had to schedule radiation early tomorrow because we are going to meet with the radiation oncologist, have the simulation session (where they map exactly where/how to do the radiation), then have her first treatment. That takes several hours to do. I first made the appointment for 1:00 p.m. so that she could get in her core classes tomorrow, but then they called back and rescheduled us for early in the morning. The scheduling clerk said, "Oh, I'm sure your daughter will prefer to miss all day of school." Boy, you can tell she didn't know Katie. I gently (ok, maybe not so gently), reminded her that cancer kids usually LOVE school because they never get to go. It's the normal things in life that they appreciate. Getting a day out of school to go to the doctor? Yeah, right, great - love that - NOT.

I'm still not sure of the plan yet after this radiation. I know we are going to Philadelphia, but I don't know what they will suggest. Right now, it is one day at a time. Katie has already planned our meals for tomorrow (Casa Linda for lunch - duh, Mom, she said), and I am only looking forward to spending the day with her. We are reminded constantly to treasure each moment.

Take care, everyone.

Love, Michele

Sunday, September 23, 2007 5:36 PM CDT

The performance yesterday was short, but sweet. Thanks to those that could be there, and thanks to those that were praying! We got up at 5:15 a.m. and didn't get home until 10:00 p.m. Where she gets this energy is beyond me!

Today, Katie had a very, very quiet day. I had to do some home visits for some of my guardian cases, so Katie and Erika played together (nicely) all day, and I'm home to cook dinner.

Unfortunately, today, another bump showed up on Katie's head. We'll be in touch with the Philadelphia docs this week to figure out a plan....hope everyone had a good weekend.

Love, Michele


_______________________________________________________
FROM FRIDAY, SEPTEMBER 21ST:

We finally heard about the MIBG scan...

Two different radiologists reviewed two different scans but came to the same conclusion...significant improvement from the August 2nd scans. The good news about the MIBG scan is that the ONLY thing lighting up is the spot on Katie's head. Her arm is no longer lighting up, and there are no new spots. Of that, we are very, very grateful.

I am still concerned about that spot. When looking at the CT scan, it is NOT the same tumor as August 2nd. It's not in the same spot, and it is not the same shape. So, we'll spend the weekend waiting on the doctor in Philadelphia to review the scans (a disk was FedEx'd to him today) to figure out what to do from here.

Either way, we are going to Philadelphia on October 1st. I've had a long talk with our doctors here and they are going to leave our treatment direction up to CHOP. I personally think that Katie will be getting another MIBG therapy. She certainly handled this one beautifully. Her counts are increasing again, and her platelets are almost back in normal range. She hasn't had ONE TRANSFUSION! Awesome. The pain in her head is getting to her a little bit, and she had to have a little bit of oxycodone last night. But..tonight is the school dance, and tomorrow she has a busy day singing.

The week at school was good - even though Katie missed all of Tuesday, she only missed two periods on Wednesday and Thursday. We got interim reports on both girls - Katie is all B's and one A, and Erika - well, she is doing ok, and could be better, but she is working hard and still loves school, so we are pleased with her too.

PLEASE JOIN US!

Remember, tomorrow (Saturday, Sept. 22nd) at 4:00 p.m., Katie will be singing with the USC Honors Choir at the First Baptist Church in Columbia, South Carolina. And by the way, all those invites to sing privately for those out of town or who can't make Saturday's performance are turned down by Katie. She will not sing for us, or for anyone in just small groups. She prefers the stage. She's got reverse stage fright....if she is in front of 300 people on a stage it's cool, but just a few people and she clams up.

Have a good weekend, everyone.

Love, Michele

Friday, September 21, 2007 3:21 PM CDT

We finally heard about the MIBG scan...

Two different radiologists reviewed two different scans but came to the same conclusion...significant improvement from the August 2nd scans. The good news about the MIBG scan is that the ONLY thing lighting up is the spot on Katie's head. Her arm is no longer lighting up, and there are no new spots. Of that, we are very, very grateful.

I am still concerned about that spot. When looking at the CT scan, it is NOT the same tumor as August 2nd. It's not in the same spot, and it is not the same shape. So, we'll spend the weekend waiting on the doctor in Philadelphia to review the scans (a disk was FedEx'd to him today) to figure out what to do from here.

Either way, we are going to Philadelphia on October 1st. I've had a long talk with our doctors here and they are going to leave our treatment direction up to CHOP. I personally think that Katie will be getting another MIBG therapy. She certainly handled this one beautifully. Her counts are increasing again, and her platelets are almost back in normal range. She hasn't had ONE TRANSFUSION! Awesome. The pain in her head is getting to her a little bit, and she had to have a little bit of oxycodone last night. But..tonight is the school dance, and tomorrow she has a busy day singing.

The week at school was good - even though Katie missed all of Tuesday, she only missed two periods on Wednesday and Thursday. We got interim reports on both girls - Katie is all B's and one A, and Erika - well, she is doing ok, and could be better, but she is working hard and still loves school, so we are pleased with her too.

PLEASE JOIN US!

Remember, tomorrow (Saturday, Sept. 22nd) at 4:00 p.m., Katie will be singing with the USC Honors Choir at the First Baptist Church in Columbia, South Carolina. And by the way, all those invites to sing privately for those out of town or who can't make Saturday's performance are turned down by Katie. She will not sing for us, or for anyone in just small groups. She prefers the stage. She's got reverse stage fright....if she is in front of 300 people on a stage it's cool, but just a few people and she clams up.

Have a good weekend, everyone.

Love, Michele

Tuesday, September 18, 2007 8:10 PM CDT

We had a long day, but a good one. We really don't have any official results, and the results we have are confusing.

Every scan went off without a hitch, and we got to visit a lot of our friends at the hospital and clinic. Katie even had the opportunity to relax with a couple of child life therapists and just color pictures for a little while - I did too. It was nice. We had lunch at a deli, and then went to visit the inpatient nurses and another child life therapist who is also a counselor at Camp Kemo (Sally Wilkes says hi everyone!)

Katie's head still hurts, but everything else is great. I looked at the head CT with her doctor, and it is bizarre. We can still see the previous tumor site (pretty much damage to the bone - it is pretty raggedy), but this new tumor is almost like a skin tumor, and not even attached to the bone. The official report said that there is significant improvement from the August 2nd scan - so the radiologist is considering that it is the same tumor. Anyway, the MIBG scan will (hopefully) solve this mystery and we can figure out where to go from here. The part of the MIBG scan I saw showed that there was still tumor in the skull, but I didn't see anything at all on her arm. I am absolutely NOT a trained anything in the medical field, but I've watched so many of these scans...still, today's scan should be read tomorrow but Katie still has to have day 2 on Wednesday and day 3 on Thursday of the MIBG scan to compare. Luckily, the scans will be in the afternoon, so Katie won't miss too much school, except for one of her favorite classes. Then again, they are all her favorite classes.

We're still on a wait and see mode. We went to dinner tonight at Casa Linda (of course) and Katie got something from a bubble gum machine. It was a plastic lizard. We wanted a frog (frog stands for Fully Rely on God). I came up with this: LIZARD so FROG. Life Is Zany And Really Demanding so Fully Rely on God. It's our new motto! Ok, it's weird, but it's true.

Thank you everyone for all your prayers today - we felt lifted up. The e-mails, phone calls, and guestbook messages were just what we needed. Please keep all the other families out there with children with cancer in your prayers - just last night, a child in North Carolina, James Runde, passed away from this hideous disease. James was five years old. There are five dads bicycling across the country right now to raise money for a specific neuroblastoma treatment - see www.loneliestroad.org. Please keep James'family and these dads in your prayers, as well.

ONE FINAL NOTE - AN INVITATION

On Saturday, the Blue Notes (Katie's singing group from school) is going to the University of South Carolina to sign with the Honors Chorus there. They practice all day, then have a concert at 4:00 p.m. If you are in Columbia, and would like to see her sing, please join us. The concert will be at the First Baptist Church in the sanctuary. The FBC is on the corner of Marion and Hampton Streets (actual address is 1306 Hampton Street) and there is a parking garage across from the main sanctuary that has free parking on weekends.

Love, Michele

Tuesday, September 18, 2007 7:45 PM CDT

We had a long day, but a good one. We really don't have any official results, and the results we have are confusing.

Every scan went off without a hitch, and we got to visit a lot of our friends at the hospital and clinic. Katie even had the opportunity to relax with a couple of child life therapists and just color pictures for a little while - I did too. It was nice. We had lunch at a deli, and then went to visit the inpatient nurses and another child life therapist who is also a counselor at Camp Kemo (Sally Wilkes says hi everyone!)

Katie's head still hurts, but everything else is great. I looked at the head CT with her doctor, and it is bizarre. We can still see the previous tumor site (pretty much damage to the bone - it is pretty raggedy), but this new tumor is almost like a skin tumor, and not even attached to the bone. The official report said that there is significant improvement from the August 2nd scan - so the radiologist is considering that it is the same tumor. Anyway, the MIBG scan will (hopefully) solve this mystery and we can figure out where to go from here. The part of the MIBG scan I saw showed that there was still tumor in the skull, but I didn't see anything at all on her arm. I am absolutely NOT a trained anything in the medical field, but I've watched so many of these scans...still, today's scan should be read tomorrow but Katie still has to have day 2 on Wednesday and day 3 on Thursday of the MIBG scan to compare. Luckily, the scans will be in the afternoon, so Katie won't miss too much school, except for one of her favorite classes. Then again, they are all her favorite classes.

We're still on a wait and see mode. We went to dinner tonight at Casa Linda (of course) and Katie got something from a bubble gum machine. It was a plastic lizard. We wanted a frog (frog stands for Fully Rely on God). I came up with this: LIZARD so FROG. Life Is Zany And Really Demanding so Fully Rely on God. It's our new motto! Ok, it's weird, but it's true.

Thank you everyone for all your prayers today - we felt lifted up. The e-mails, phone calls, and guestbook messages were just what we needed. Please keep all the other families out there with children with cancer in your prayers - just last night, a child in North Carolina, James Runde, passed away from this hideous disease. James was five years old. There are five dads bicycling across the country right now to raise money for a specific neuroblastoma treatment - see www.loneliestroad.org. Please keep James'family and these dads in your prayers, as well.

Love, Michele

Monday, September 17, 2007 8:45 PM CDT

I've been trying to come up with a way to write this update for a couple of days now. It seems so easy to share good news. The bad news is just harder.

On Saturday evening, at dinner, Katie told us that her head hurt. She showed us a new bump - one that to me looks like it is right behind the previous skull lesion, but that Mike and Katie think is on the same spot. Because she has lost all of her hair again, it is really noticeable. The bump is soft and spongy, just like the one 6 weeks ago, and it is painful to the touch. Luckily this one hasn't started to be painful all the time.

Since scans were already set for Tuesday, we didn't call any doctors...I just e-mailed them to give them a heads up. Katie has had no fevers (and she usually runs low grade fevers when her disease takes off), and she feels great. I just had to chase her to bed at 10:00 p.m. and she got up at 6:00 a.m. today and went to school. She has more energy than I do. Her blood counts today were amazing - the only drop was her hemoglobin, and you can't tell. Katie's platelets are up to 68,000. They keep climbing and climbing - it is great!

So, right now, everything depends on Katie's scans tomorrow. We may be doing another MIBG therapy (it has given her six weeks of blissful good health), or changing gears - again. She is such a trooper, though. Tonight, we were working on her social studies project - a scrapbook all about Katie (yeah, tough project, we know - subject matter is just IMPOSSIBLE). She just appeared behind my shoulder and asked me to add to this update a section from her scrapbook. Her social studies teacher wanted them to write a paragraph about themselves and their own personality. This is what she wrote:

"I think people see me as a cancer kid. People always say to me, “Katie, you’re my hero,” or “Katie, keep it up!” So, I try and try to beat my cancer. But sometimes it comes back. But if I die, I’m going down fighting. People think I’m a brave little girl. I think I’m a fighter, I’m brave, and I’m funny. I plan to make it to college before I go and I hope I make it. I like to be around people who make good choices and who do the right things."

I'll update tomorrow night if I have any news. It's going to be a long day - CAT scan at 9:30 a.m. (of her head, neck, chest, abdomen and pelvis), then MIBG scan injection at 1:00, then physical exam at 2:00 p.m. then MIBG scan itself at 4:00 p.m. Whew.

Love, Michele

Thursday, September 13, 2007 9:36 PM CDT

We're having another good week!

Katie's counts on both Monday and today were good. In fact, now her platelets are improving, and they are up to 57,000! That's still low, but a wonderful improvement. Her hemoglobin is slipping a little bit, but you can't tell. Her energy has been wonderful and I swear she is getting less sleep than me (and needing less sleep than me). Katie's white count slipped off a little bit, but she is doing the neupogen every other day and it is keeping it more stable than the dramatic ups and downs. Her ANC is a respectable 1500. Right now, she has no restrictions on being around people and no restrictions on physical activity!

Erika has joined a YMCA soccer team, and Mike and I figured out how we are going to pay her college expenses - she's going to get a scholarship! In her first game ever, after just one practice with her team, she scored a goal and had an assist. The team won 4 - 1. Go Lady Foxes! It must be the colors...same as the Gamecocks. Last weekend, our Gamecocks beat Georgia, now Erika is wearing maroon and black and winning soccer games! Woohoo!

Scans are on Tuesday, and she is completely unconcerned about it. Katie just doesn't want to miss school. Both girls are doing pretty well with their school work, and I'm so proud of them that they like school, and try their best. Katie's starting to hit the wall a little bit with vocabulary and it kind of makes me laugh. She can rattle off medical words like nothing, but struggled with law words last week, and with finance words this week. Still, eighth grade is great, and she has the best smile in her voice when she calls me the minute she gets home.

Hope everyone has a good weekend!

Love, Michele

Saturday, September 8, 2007 9:48 AM CDT

Katie and Mom here...

MOM: Did you have a good week?

KATIE: Yes, I did.

MOM: Why was it a good week?

KATIE: Because I saw my teachers and my friends.

MOM: What else happened?

KATIE: I'm Student of the Month! For my team at school!

MOM: How cool. How are you feeling?

KATIE: A little bit tired.

MOM: That's all?

KATIE: Yes.

MOM: How are your counts?

KATIE: I don't know, you have them! And besides, I can't read them. I only understand if they are good or bad.

MOM: Are they good or bad?

KATIE: I can't remember!

MOM: How about a little bit of good and a little bit of bad?

KATIE: Yes.

MOM: Your white count crashed again, so you had to go back on neupogen, and your platelets went a little lower, but not enough for a transfusion, and your hemoglobin is good - improved again even.

KATIE: If we have to go to the hospital for a transfusion, it can't be on a Thursday or Friday because I have to help Ms. Shaw with JTI. (JTI is the Junior Teen Institute - a club Katie belongs to).

MOM: Maybe I can't help that - are you going to be mad at me?

KATIE: Well, you are going to have to do something, because I might miss something important!

MOM: Princess, I might not be able to do something about it.

KATIE: Well, ask Dr. Laura or Dr. Kevin, they'll work it out. And I'll be extra careful.

MOM: You think you can talk your doctors into anything, huh?

KATIE: Yes, I do, because they love me so much (she has a huge smile on her face right now).

MOM: Think a lot of yourself, huh?

KATIE: Yes, I do. Tee hee.

Back in 2000, when Dr. Adkins (Katie's surgeon) first met her, we had a very lengthy meeting in his office about the surgery to remove her primary tumor. Katie participated in the meeting (she was five years old at the time), and she was very interested in everything he was going to do - mostly about the scalpel. She kept envisioning it was going to be this massive knife, but when he showed her his tiny scalpel, she felt a lot better. Of course, this meeting was all about her, and she was very much Katie, and at the end he asked us if we wanted to operate on her self-esteem because she may have a little too much! It was so funny.

Katie's cold is still hanging around a little bit, but she managed to go to school the past three days. Her platelets are down to 31,000 but she hasn't had any bleeding issues (her gums may start bleeding, she may have a nosebleed, things like that).

Erika's had a much better week this week, and next week she is going to start playing soccer at the Y. She really needs an outlet for that energy.

Scans are now scheduled for September 18th, and the next MIBG treatment is set for October 1st. I can't believe she hasn't had one transfusion yet. We were changing the dressing on her central line site last night - it is always a little painful, and she yells out but always stays very still and lets me do what I need to do. She apologized for being so weak and a wimp. I almost couldn't finish what I was doing because I was laughing! Weak and a wimp? I don't think so! She's the toughest girl I know! You are my hero, kiddo.

Love, Michele

Tuesday, September 4, 2007 8:18 PM CDT

Hi, everyone.

Katie's sore throat has developed into a full blown cold that gradually all weekend made her a little sicker. Fortunately, there was no fever, so no call to the doctor. We squeezed in a lot of fun - mostly girl stuff (poor Mike), but he tagged along shopping and eating at the Melting Pot...Katie was craving chocolate! The best part of the weekend was to have three days together without medical stuff. Today, Katie woke up feeling worse than ever and stayed home from school. She had a bad sinus headache, stuffy nose, some sneezing...she feels a lot better tonight and is going to school tomorrow!

We did go to McLeod for her blood counts on Monday, but didn't find out the results until today. Her hemoglobin has dropped a little bit to 9.9, which in Katie terms is perfectly fine. Some kids might be tired below 10, but not Katie. That's almost normal for her. Her platelets have fallen to 34,000 - not yet transfusion ready, but if they keep going like this, she'll need platelets by the end of the week.

The real shocker was her white count. Last week it was 1.2. Today, add a zero onto the end of that! With three days of neupogen, her white count was 12, and her ANC was over 11,000...now this could be due to the cold, or it could be due to the neupogen. She is now off that drug (and we have about $3,000.00 worth of it sitting in our fridge), and we'll keep a close watch on her counts.

Today, I had the opportunity again to speak to the first year medical students at University of South Carolina. The topic of my speech is "The Impact of Illness on the Family." I like to call it Katie 101. It was my 8th year speaking (where does the time go!) I really enjoy it, and my goal is to make the med students laugh and cry, and I hit my goal about 15 minutes into the speech. It is really difficult for me to boil our lives down to 30 minutes (ok, I talked for at least 40!) I try to hit the highlights and it is my one opportunity to really let these future doctors have it from a parent's perspective. It's kind of cool - we run into these students now doing their internships.

Well, my brief little update has turned into a long one. I keep trying to get Katie to help me, but now our evenings are filled with homework, and she is usually in bed when I update. Have a great week, everyone!

Love, Michele

Saturday, September 1, 2007 10:22 AM CDT

Hi, everyone.

Thursday's blood counts got Katie into the next phase of treatment. Katie's white blood cell count and her ANC (ability to fight infection) have fallen below acceptable levels, so now she is getting a daily injection of Neupogen to increase her white count. This is usually given as a regular shot, but Katie hates it so much. Last year, when she was getting topotecan/cytoxan, we used this little contraption that looks like a baby bottle to slowly infuse the neupogen into her central line, and it worked like a charm. Our doctor in Philadelphia ok'd using the drug our way, and she started the injection last night.

I was so hoping Katie would make it through two weeks of school with no problems, but that was not to be. She came home mid morning from school Friday with a sore throat, but no fever. Today, she seems just fine. The school nurse told me there are lots of bugs going around, and with Katie's low white count, that's not good. But, she hasn't developed anything else as of this moment. Yeah!

Katie's platelets have fallen, too - 75,000 - but that's still ok, and not at the transfusion level. Our clinic transfuses at about 20,000. Her hemoglobin has improved - again, so she probably won't need red blood transfusions. The pain in her skull lesion is all but gone. She's eating well, and feeling great (other than that sore throat). I can't tell you how happy we are that this path of treatment has gone so well.

Katie is fine with her hair loss. She's back to bandannas and hats, and told me yesterday when she saw me doing Erika's hair that she is glad that she is bald! Too funny.

Have a great Labor Day weekend everyone! Check out the new pictures!

Love, Michele

Wednesday, August 29, 2007 10:06 PM CDT

I wasn't going to update tonight...I wanted to wait until tomorrow to get Katie's blood work and see where she was headed. But...

Blood work on Monday was still good. Her hemoglobin is still improving (yeah, no red blood transfusions!) but both platelets and the white count are inching downward (as is her ANC). But, those three numbers are still ok, no danger zone yet, and no transfusions yet. Things are ok!

But Monday morning, Katie noticed some hair on her pillow. The picture above shows Katie's cute little curls. The style really suits her. Yesterday and today more of it started coming out. A few minutes ago, she came downstairs. I thought she was sound asleep. She got a comb and began pulling all of her hair out. She was perfectly silent. No sobbing, no wailing - just calmly pulling all of her hair out. I eventually started to help her and we ended up with a nice pile of hair. I asked her if she was ok, she told me yes, just sad. She's also nervous about school, because she is going to wear a bandanna tomorrow and just doesn't want to get yelled at. I sent an e-mail quickly to all her teachers and her principal, so hopefully this will be no problem.

Both girls continue to love school, although Erika has descended into her usual problems with homework. It just breaks me heart to see Katie bald - AGAIN. We've been working on her careers portfolio, and on her social studies project (a history of me project) and we had so much fun looking back at old pictures. Both projects ask her to predict where she will be in 10 years, and both ask what she wants to do when she grows up. Katie is fluctuating between being a veterinarian and an animal cop. She took a skills assessment test and guess what - it says she should go into health sciences. Surprise, surprise.

I was talking to a friend of mine today about what Katie is going through, and he made a great point - being in 8th grade is hard enough when everything else in your life is normal. She really is my hero.

Take care everyone.

Saturday, August 25, 2007 8:51 PM CDT

Happy Saturday!

We have had a busy week. The first week of school went off without a hitch. I still can't believe how good things are! Katie had blood work on Thursday, and her counts are steadily dropping, but nowhere near the danger zone yet, on anything. In fact, we saw an improvement on her hemoglobin!

Both girls love school so much. On Friday, I met with the homebound coordinator, who happens to be the first one we had when Katie relapsed...which was two school years ago! Hard to believe. She had just met with Katie's teachers, and we are now ready to go if she needs homebound instruction...

Katie's energy has been good, she is eating ok, and she looks wonderful. We went to the movies today to see "Hairspray". I was really curious about my girls' reaction to segregation. I didn't really clue them into the movie at all except to say it was a musical. They both love "Grease" and know John Travolta, and refused to believe me that he was Edna in the movie. We had some very interesting conversations at the end, and we all loved it.

Hopefully we'll have another full week of school. That would be awesome. Katie continues on the Monday/Thursday schedule for blood work, so we'll see about transfusions. It already feels like a lifetime ago when Katie had her MIBG therapy, but it really was less than three weeks ago.

Take care, everyone!

Love, Michele

Tuesday, August 21, 2007 5:15 PM CDT

Hi, everyone!

Things have been good in the Krize house. The transition back to school has been fine...both girls are very excited about school. We had Katie's orientation last night, and it was nice to meet her new teachers. We leave for Erika's orientation in a few minutes. She loves 3rd grade already, and jumps out of bed every morning to go to school.

Katie had blood work done late Monday afternoon. Her counts are falling, but everything still looks good. Her platelets are perfect (357k), hemoglobin is a little low at 9.2 (but she tolerates much lower without a transfusion), her white count is 2.5 (pretty low), and her ANC (ability to fight infection) is 1600. Below 750, and she has to go on a drug called Neupogen to increase her white count (the ANC is calculated using her white count and two other blood counts).

After the drama of the past month, it has been good to have some normalcy. But this roller coaster still just gets to us. A month ago, Katie wasn't using her left arm and was in agonizing pain. Now, she feels great! We are just so thankful for the good days.

Take care, everyone!

Love, Michele

Sunday, August 19, 2007 4:19 PM CDT

I did update the other day, I swear! I just must not have saved the update...so, to catch up...

Katie's doctor's appointment on Thursday was great. She is feeling so much better, the thrush is practically gone, and her counts came back PERFECT. She had an ANC of 2900, and her platelets were over 500,000...her white count slipped a tiny bit, but not much, and her hemoglobin was normal (well, normal for Katie - she always runs a little bit low). I was expecting her counts to fall a little bit, but they haven't fallen at all. Our doctor in Philadelphia did tell us it would be two to three weeks before her counts fell. It will be two weeks on Tuesday.

All this means is that Katie can start school tomorrow confident that she is not hugely suspectible to infection or excessive bleeding from low platelets. The only "bad" news we got was that she has lost 7 pounds. She is still +13 from May, and she looks fabulous, so we aren't going to start an appetite stimulant - yet. She's allowed another five pounds down, but then it needs to come back up or stabilize. She's trying, but just not interested in food. I keep hugging her, hoping by osmosis my constant hunger and feeding my face will pass through to her!

We finished school shopping this weekend, and right now the girls are organizing their back packs. We have their orientations Monday and Tuesday night, so we are eager to meet their teachers. Katie will do blood work on Mondays and Thursdays at our local hospital and we'll see what the next few weeks bring.

The plan is this: blood work twice a week, transfusions when necessary, hospitalization for any high fevers due to line infections or anything else, scans if necessary for new pain; regular scans the week of September 20th. If Katie stays stable or improves, and doesn't need her stem cells back, then she may have another MIBG treatment in October.

Please remember all the other families out there dealing with this monster, and other cancer monsters. Take care, everyone.

Love, Michele

Tuesday, August 14, 2007 10:11 PM CDT

If there was ever a question that Katie is truly my daughter, then tonight answered it. A little retail therapy is all a girl really needs! Katie spent the day resting, not eating much, and then a friend of hers called to invite her back-to-school shopping tonight. She took a bath, brushed her teeth, got dressed (and looked really cute too!) and headed out the door with her friend...she came home a little upset at having spent so much money, but having bought the CUTEST shirt for her first day of 8th grade.

There are some new pics - check them out. One of them is from when Katie was getting her MIBG treatment. She has a doctor's appointment on Thursday for some blood work and a physical - have to get that thrush checked out.

Take care, everyone.

Love, Michele

Monday, August 13, 2007 8:48 PM CDT

Sorry for no update since Saturday. Things have been insane, but the best news is...WE ARE HOME.

Sunday morning at 5:00 a.m., Katie ran another huge fever. We fell back to sleep, and Mike came in to give me a break - I decided to go visit Erika in Reading for a few hours (and take a real shower at Beanie's house), and Mike called on my way there...they were talking about releasing Katie at 4:00 p.m. What? Are you kidding? She still had fever!

Anyway, while I was saying good bye to Katie, she was just sobbing over and over, "I want to go home, I want to go home..." I told her no more fever, and we could go. She did not run a fever on Sunday for the rest of the day, but Mike called me again and told me her mouth looked horrible. Katie developed very painful thrush in her mouth. So, she started on an anti-fungal for that.

I got back to the hospital at 4:00 p.m., and she was finally discharged at 6:45 p.m. We had to go back to the Ronald McDonald House, check out and we grabbed some dinner. Katie was starving for Red Lobster, but she had two bites and that was it. She got very quiet at dinner and told us that she was sorry she put us through all this and that she just knew that we had wished that we had adopted another child. Heart officially ripped out, and stomped on. This poor kid has been through enough.

We got to Beanie's very late, but guess what - Katie hugged and kissed Erika! I was so shocked that the camera wasn't even out!

We got up early (ok, not really early, I'm sorry I couldn't get out of bed, Beane!) and got home about 8:00 p.m. Katie's temp has not been high, but it hasn't been low either...she's having low grade fevers now and the mouth thrush is pretty painful. She is still barely eating or drinking, but she is at home.

School starts in a week - I can't believe it. I don't even know what day it is. It was a long drive home, and we are exhausted...BUT WE ARE HOME!

Love, Michele

Saturday, August 11, 2007 10:04 PM CDT

I thought I would be updating from home tonight, but we still aren't anywhere close...KATIE IS STILL INPATIENT AT CHOP!

Every seven hours, the same scenario: "Mommy, I'm cold..." I look over at Katie, and she is shivering like she has been playing in the snow for hours. I'll take her temperature, and it will start climbing. If we leave her like this, suffering with the shaking chills (and the headache that comes with a fast fever), it is horrible. So, we have been treating these symptoms. Tonight, the highest her fever got was about 101.2...not REALLY bad, but I just didn't want her to suffer. Still, two hours after Tylenol, it came down to 100.5 - in other words, still a fever.

We had a visit from a pediatrician tonight, who was scratching her head. Katie has no other symptoms. We're going to see how she does overnight, and then decide on what other course of action - scans, x-rays, more blood work. They did more cultures today and so far, the first set and this set are both negative - nothing is growing. If she didn't have a huge white count, I would say this is tumor fever, but with tumor fever she doesn't have an elevated white count. Can you say AAAAHHHHHHHH!!!!!!

This morning, Katie was really upset and her fever was climbing. The sun was streaming in our window, and she had me pull up a chair so she could sit in the sun. She put her face up into the sun and then turned around and begged her nurse to go outside. No can do. She curled up in the chair like a little cat, and I read a Nancy Drew mystery to her, while she shook like a leaf.

She slept all afternoon, while I decided to break into her stash of stuff to do. Tracy - I made all the jewelry in that kit! I made two necklaces, two bracelets, and an anklet. I've been getting lots of compliments! Thanks for the boredom busters!

We are still in the radioactive room, so every time we go in, we have to put on booties, a gown, and we are supposed to wear gloves. So does everyone else. The room is bare - it has plastic all over it, and we can't eat or drink in the room (only Katie can). It is very frustrating - we could have been discharged on Thursday but every time I ask for a regular room we are told no, because of the radiation. So, it's ok for us to wander the streets, but not ok to get a regular room???? One more time - AAAAHHHHHHH.

I have to get back to Katie. Take care everyone...

Love, Michele

Friday, August 10, 2007 9:14 PM CDT

Katie is still inpatient at CHOP. Her temps keep spiking really high, and she is not eating or drinking - what she is doing really well is sleeping. The cultures from her central line have grown no bugs, and after checking her counts today the only thing elevated is her white count, which shows she is fighting something, but no one knows what.

Tonight she started with some diarrhea (sorry, baby, I know how much you hate when I tell everyone about THAT!) I did get her out of bed when her fever went down tonight (thanks to Tylenol - Jennifer, they have plenty here, believe me, but thanks anyway!) she had a bath, brushed her teeth, and I slathered her with lotion. She says she feels much better, but when I left tonight, she had a hot pack on her belly because she was having cramping, and she barely said goodbye. Mike is spending the night, and they were glued to wrestling when I left, and barely noticed I was gone!

I met with her primary doctor and we reviewed her latest MIBG scan together. He disagrees a little bit with the radiologist. The radiologist saw the skull lesion (it is VERY bright), the left arm lesion, then two other lesions in her abdomen and one on her left hip. These last three spots were not seen on any other scan, and they were very, very faint. The doctor called those "equivocal" and couldn't say they were neuroblastoma. Still, even if they are, they are very small and the MIBG treatment is good on small tumor load. Overall, he was very pleased to see her reaction to the treatment so far.

When we finally leave here, Katie will have twice weekly blood tests, and most likely numerous transfusions. Her counts today were perfect - they won't fall for two or three weeks - of course, right when school starts (August 20th). Scans will be in six weeks.

Erika is doing great at Beanie's...they went shoe shopping last night and made a huge discovery - Erika now wears a woman's size 6 shoe. She is almost as tall as Katie - who is almost as tall as me...they are both going to outgrow me in a minute. Not that that would be difficult. I had to add that so no one else would...(clearing throat...you know who you are!)

We need a few more prayers for no fever...take care, everyone.

Love, Michele

Thursday, August 9, 2007 8:15 PM CDT

THE GOOD NEWS

Katie's radiation level this morning was an 8...SO CLOSE...so they came back and measured in the afternoon - it's a 5.9! That means we are sprung, right??? Wrong....

THE BAD NEWS

Katie hit a fever of 103 degrees right after they got that reading. Unbelievable. Her lungs are clear, they have cultured her line, given her Tylenol, and the fever came down to about 100 degrees. Then it spiked right back up 5 hours later. Right now she is sound asleep. She is completely ticked, and just wants to be home. And the thing that kills me is that she APOLOGIZES. She is so upset because she believes it is her fault we aren't home, and that just breaks my heart. No matter how much I tell her it isn't her fault, she doesn't believe me.

Katie had her MIBG scan today to see how well the isotope was taken up. She was having shaking chills when she laid down for the scan, but she tried so hard to stay still. I could tell that the MIBG had taken up a lot in her skull. The lump is more noticeable now, though and more painful.

Still, she has her moments. I can get a brilliant smile if I just ask for it. I have heard "I love you" a couple of times today. She grumped about taking her meds once - but took them anyway. She is grumpy for a reason - they have written orders for her to get Tylenol, but either in meltaway tablets (gross, and she has to take SEVEN of them) or in liquid (grosser, and she has to take a gallon of that - ok, I'm exaggerating...) We have noticed that everything here seems geared to much smaller children. Or maybe Katie is just getting older and pediatrics is just that....Or maybe we are ALL JUST SO SICK OF THIS.

Fever and cancer patients just don't go together. So, pray for this fever to disappear so we can come home!

Love, Michele

Wednesday, August 8, 2007 9:04 PM CDT

The sleep deprivation continues...Katie is just exhausted. She has been going to the bathroom every two hours since Tuesday afternoon. She has also had more pain in her head, and just this evening, she has been starting on some low grade fevers. We literally brought a suitcase full of stuff to do and all she has done is watch TV or videos.

Mike came in this morning, and I headed back to the Ronald McDonald house for a shower. Erika really wanted me to come see her today, so I drove to Reading to visit with her. I got treated to a home cooked dinner - thanks, Beanie, it was awesome! I picked up a few groceries and headed back to the hospital with Katie's absolute favorite thing to eat in the world - a Subway ham and cheese sub. She took one bite and then the pain in her head and the fevers started...sigh....

The doctor's visit went well today, he was pleased with her progress. She is a 20 on the radiation scale, and needs to be a 7. He was hoping that she could possibly be discharged on Thursday, but probably not...the level falls quicker in the first day than the subsequent days. And if she manages a full blown fever, we won't be getting out of here on Thursday.

Katie's MIBG scan will be tomorrow, and we are expecting that the areas with neuroblastoma will light up even more with this treatment, which is a good thing. Katie is so ready to go home. She has been so brave, and so strong, and even when she is grumpy she is easy to deal with. She never tells me no, cooperates with everything, and is such a good girl. I hate that she has to go through anything else.

Take care, everyone.

Love, Michele

Wednesday, August 8, 2007 1:45 AM CDT

It is almost 3:00 a.m., and I have figured out the worst thing about this therapy - to get rid of the radiation, Katie has to pee every 2 hours. Not fun.

Katie got her infusion at 1:30 p.m. today. It was boring - like an infusion of fluids. No big deal. She isn't going to glow - we are kind of disappointed! Right after the infusion, she got pain in her skull at the same site as her lesion. This is actually a good thing...the pain was bad, but not really bad, controlled by pain meds, and it may mean the MIBG went straight there to start killing those nasty cancer cells.

Katie also had an increase in her blood pressure. It steadily crept up there until she needed one dose of meds and it has been fine ever since. The pain and the increased blood pressure sound more dramatic than it really was.

We have become like the plague now. No one wants to come in, and really, no one should visit us. When we are in the room, we must wear a dosimeter to measure our radiation level. The IV pole (Katie is getting mega fluids and sometimes other drugs by IV), is right by the door, so the nurses open the door (or look in the window) to do what they need to do. Vitals are only once a day (now that her blood pressure is down). Her IV tubing is so long that she can get out of bed, and go to the bathroom, without ever moving the IV pole. Bizarre.

She's had some nausea and some pain, but all manageable. We watched a movie together tonight ("Click") that was fun. Her appetite is gone again, but who cares. We'll take care of that at home. And, boy do we miss home! Hopefully we'll be home soon, but no one can predict when that will be...Katie hears from 2 to 5 days after infusion, and she is convinced that she is one of those 2 day kids...but she is also 13, and that may mean she is a 5 day kid.

Take care, everyone.

Love, Michele

Monday, August 6, 2007 9:02 PM CDT

Hard to describe this day....

We had a leisurely breakfast, then drove to CHOP (all of six blocks) because we had a suitcase and some backpacks to haul. Katie's appointment at 1:00 p.m. was fine - a little blood work (no problem now that she has a new central line!), and a physical by both a nurse practitioner and an oncologist. Then, a leisurely lunch (McDonald's - of course - there is one in the hospital!), then admission to 3 South. Katie is in room 1. Her room number is 3S01. I don't have a clue what the phone number is!

We met with two more oncologists (the two primaries for this treatment), and then just relaxed. The room is weird. Everything is wrapped in plastic and there are large lead shields around the bed. There is a great on-line tutorial about what Katie is going through - the children's one takes no time at all to read, and it is very informative. Go to: http://stokes.chop.edu/programs/maris/mibg4.pdf and you will be able to check it all out. I'm going to add the link at the bottom of the page in case this link doesn't work.

Even though Katie has room service (really), she still made me go to the cafeteria to find her something to eat. She has lost two pounds, but I'm not going to harrass her about that yet. She looks absolutely gorgeous, and really feels pretty good. Her pain is tolerable, even without drugs, and her blood counts are perfect. Everyone here is pleased with how her tests turned out. Still, we are missing some reports from all the tests last week and that irks me. This is what we went through in June. How hard is it to let us know what a scan showed, or what the bone marrow biopsy showed? Both of those were read last week, but we still don't know...rrrr....

I took some great pictures today, but Mike will have to try to upload them to the laptop. I'm not even going to attempt it. He is staying tonight so they could watch wrestling together (not my cup of tea), and I'll stay tomorrow night. The new meds Katie is taking (two types of liquid iodide) were a breeze. She asked me point blank tonight if this treatment is going to make any difference in her cancer..and I told her what I did...I put it in God's hands (see, Debbie, I do listen to you!). My spidey sense as a mom has rarely failed, and it tells me now we are in the right place.

Katie gets hooked up to fluids tonight, then the treatment itself - a two hour infusion - will probably be at noon or 1 p.m. tomorrow.

Take care everyone!

Love, Michele

Monday, August 6, 2007 8:27 AM CDT

We have arrived in Philadelphia, and we are at the Ronald McDonald house on Chestnut Street. We are in the new part, but the old mansion part was owned by the Swain family who ran the predecessor to the Philadelphia Inquirer. It is a beautiful mansion and reminds me a little bit of Cabrini's mansion. That's my college, and it was also owned at one time by an old Philadelphia family.

Katie's appointment is at 1:00 p.m. today in the clinic, and she will be admitted after the appointment. We are still tring to work out who is staying and when - both Mike and I are here...Erika is staying with Beanie and she is happy. She wasn't clingy at all when we left.

Katie seems to be in a good mood, not worried at all (at least she isn't talking about it, and I think she would...) She had some nuclear meltdowns this weekend about silly things, but considering the stress we were under, well, that's to be expected. She woke up laughing today because I told her Daddy was going to sleep in because it is SO COMFORTABLE to sleep on mattresses covered with plastic and plastic pillows (done to keep down the risk of infection from regular pillows and mattresses at the RMH). I'm sure her laugh woke up our neighbors, but it was so good to hear.

We have to go forage for some breakfast. Have a good Monday, and hopefully I will update often. Last night we couldn't get the wireless connection at RHM to work, but this morning it seems fine.

Love, Michele

Thursday, August 2, 2007 8:28 PM CDT

I just read over the guestbook, and let's just say I'm getting a little overwhelmed (but I love it)...thanks for all those messages. It means so much to us.

Today was an even longer day, but a better day. We visited the following places: pediatric cardiology (echocardiogram done by Doug who has done echos for Katie for 8 years and was very caring when it came to doing an echo on a child who just had a central line implanted on the same place he had to place cold gel and an ultrasound camera); radiology (for a CAT scan of her pelvis, abdomen, chest, neck, and head); nuclear medicine (for day 3 of MIBG scan), the cancer clinic (blood work and urine tests). In between we squeezed a quick lunch and grabbed CD copies of the scans for the docs in Philly.

CT shows exactly what MIBG shows - two tumors, one in the skull and one in the left humerus. The good news is that the CT does not show any disease in her brain.

Katie's pain was bad, but not awful - controlled by lots of narcotics. She hears me talking a lot about drug tests and my clients (of course, my clients NEVER need drug tests!) and wanted to know if she would be positive. HA HA HA. Yep - she wouldn't exactly be clean! Katie was a little concerned, but when I explained that it was fine and legal because she had a prescription, she was good..

This morning, when we arrived at the hospital, my secretary Lisa called. Lisa's brother-in-law, Andy, has been fighting a very agressive cancer for the past few months. He passed away last night. Andy was a wonderful husband, father, brother-in-law and just a good person. He will be sorely missed by everyone. Five minutes later, we were walking into the hospital, and saw one of our favorite volunteers, Maria. She let us know that one of our dear friends from treatment 8 years ago had relapsed and was in the hospital, in so much pain she was unable to walk. Pam just graduated from high school in June, and turns 18 in September. Each day we gain a perspective I wish we never knew.

While in the billing office this afternoon, we saw one of our favorite poems. It is below:

What Cancer Cannot Do

Author: Unknown

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

(I copied this from http://www.scrapbook.com/poems/doc/4878/403.html.)

Good night, everyone...

Love, Michele

Wednesday, August 1, 2007 8:49 PM CDT

It has been a long, long day. I don't even know where to start. Maybe at 6:00 a.m. when we arrived at the hospital. One of the first people we saw was Marolyn, the child life specialist, who was delivering Katie a blanket because she was always cold. Marolyn, you are the best. The work up and wait for surgery was fine. Chuck got her IV started instantly, and she went back into surgery.

We heard that our fourth doctor, who had never done a bone marrow on Katie, was going to be the one today. So, we warned the whole OR staff that Katie's bones are very strong and she may have a tough time. She did - had to call in another oncologist to finish, and now her pain on the left side quadrupled.

The line insertion was fine, and she woke up a little grumpy, but ok. Since then, she has had some major vomiting, trouble peeing, dizziness from all the pain meds, and major pain.

Her scan at 1:00 went fine, although painful from laying on those bone marrow sites, and we got a chance to really look at the MIBG scan from today and yesterday. The two areas lighting up are her left arm, and her skull. The skull tumor is huge. It is much, much bigger than in February. That has us scared to death.

We went to the clinic, and they have added on another test - an echocardiogram at 8:30 a.m. tomorrow. It will be another long day at the hospital. Luckily, our child life specialist, Susan, escorted us out of the hospital to find our car because we were all loopy at this point. Susan, you are the best too. Mary Nell, you were right about her!

My cell phone has died, and I've lost messages, and luckily Mike figured out how to save my numbers. I got so deeply angry at Verizon for treating me like dirt, that I stormed out of there and spent the evening switching to Sprint. There are lots of other negative things that happened today, and right now I feel like dwelling on that and descending into a lot of anger and resentment, but not on this update.

Katie continues to amaze me with her spirit and determination. She was absolutely sassy this morning with all the OR people (surgeons included), but in a good way - very cute. She was sweet even when she was hurting. When she begged me to cancel my hearing this afternoon and stay with her because she needed me, I did just that.

Little one had soccer again this evening and loved it. We are all on short fuses right now, with another day in the hospital tomorrow. I'll update more when we know more.

Love, Michele

Tuesday, July 31, 2007 4:56 PM CDT

Hi, everyone.

Katie had her MIBG scan (day 1) today. Mike took her - it took three sticks with a needle, but she finally got her injection. After that, she may be relieved to get another line.

She has been feeling pretty good, and hasn't needed any pain medicine. Tomorrow morning - we report to the hospital at 6:00 a.m.! Unbelievable. Katie will get another central line, and have bilateral bone marrow aspirates and biopsies. She has been talking all day in a quiet, mousy voice, and telling me she is starting to get scared about all that is going on. She'll have day 2 of her MIBG scan tomorrow. Then on Thursday is a big CAT scan, and day 3 of MIBG scan.

Unfortunately as always, there are many other children battling this and other cancers. One mom on her website put it very succinctly - it is so frustrating that our children have to go through this torture when they should be having fun. This summer has sailed by, and we are very happy that at least Katie got to experience most of her camps, and did so feeling pretty well. The only camp she missed was a day camp at the YMCA - a hip hop dance camp. But this week, it just brings it home that she has to go through so much.

I think I mentioned her hero beads before. Candlelighters, a cancer organization, has beads for each "event" - CAT scan, bone scan, bone marrow, x-ray, etc. They also give the cords to put them on, and beads that spell out the child's name. The cords are each 24 inches long. Katie has three plus almost a fourth strand FULL. I've had an x-ray during my lifetime. So, if I did the beads, I'd have my name, and one bead. I'd trade places with her in a minute.

After all the drama in the past 8 years with our insurance company (Tricare, through the military), things are working out. CHOP has been amazing - they told me that it is THEIR job, not mine, to deal with the insurance issues, and that I needed to concentrate on Katie and let their team worry about it. Just today, the nurse practitioner assured me things were cooking along just fine and they have no problem saying that Tricare would cover this treatment. The relief we feel hearing that is tremendous.

Katie's going to spend the night with Lakin in Columbia - her buddy since the day Lakin was born. Lakin always improves Katie's mood. Mike and I will both be with her tomorrow. To all our friends and family that are helping with Erika, the dogs, work, and everything else - thank you. We will never be able to repay you all for everything you have done for us.

Love, Michele

Sunday, July 29, 2007 6:57 AM CDT

Good morning, everyone.

It is about 8:00 a.m. on Sunday, and I can't sleep. We made it home to South Carolina late last night. The trip was fine - the girls are awesome travelers. We hit a lot of traffic in Washington that lasted until Richmond. That stretch took us three times as long as normal. I thought we would all sleep in, but here I am...I'm making a to do list about a mile long.

I read over my last update, and it looks like I need to clarify a few things! Katie's scans will be this week (Tuesday through Thursday) here in South Carolina. Her MIBG treatment will be in Philadelphia. She has a clinic appointment on Monday, August 6th, and then will be admitted to CHOP that afternoon. The treatment itself (a two hour IV infusion) will be on Tuesday, August 7th. We will hopefully be home in South Carolina on Saturday, August 11th.

Erika starts soccer camp tomorrow evening for a week, and she is very excited. Katie continues to feel pretty good, and hasn't needed pain medicine in two days now. Thanks for all the ideas about boredom busters. I'll update when we know more about scans/etc. It's going to be a busy week.

Love, Michele

Friday, July 27, 2007 9:21 AM CDT

Things have been moving rather quickly...and that's a good thing. One of our discussions with CHOP was how to treat Katie in the interim while we wait on a bed to open for therapy here...turns out that will not be necessary.

Let me start with how things are today. They are good! In the past two days, Katie has only needed one pain pill. She didn't even take a nap yesterday. Her energy was pretty good, although she couldn't last through all the activities we had planned. That was fine, though. We were asked to wait here in Reading until we could get all the scans and therapy scheduled, just in case. So while we waited, Beanie and I took our children to the Strasberg Railroad for a relaxing ride through the Amish countryside. It was very nice, and the kids really enjoyed it. Afterward, we did a little shopping, and then spent the evening with Mike's family. Katie was happy and sweet all day...just that made us feel better.

We finally got the call we were hoping for in the afternoon. We have chosen to do MIBG therapy. MIBG is a radioactive isotope that is used in very small quantities for a specific scan for neuroblastoma. When used as a scan, it lights up the areas of tumor. When used as a therapy, the dose is 90 times what is used for a scan, and put simply - it is internal radiation. The isotope seeks out the neuroblastoma cells and kills them. It is an injection, it takes 2 hours, and the primary side effect is complete boredom (at first). Katie will become radioactive for a period of time, and has to be inpatient because the federal government doesn't want its citizens walking around the streets being radioactive. She will be admitted on Monday, August 6th, get the injection on the 7th, and hopefully will be discharged when her radiation levels get to a 7 by Friday or Saturday.

The other side effect of this therapy is an attack on her blood cells. She will most likely become transfusion dependent for awhile after the therapy - for both red blood and platelets. Mike and I can no longer give blood because the Red Cross has determined that since we lived in Germany 17 years ago, we may have mad cow disease. So, if anyone would like to do anything to help us, then please go give blood. Katie is B+ which is pretty rare, and I think it is pretty difficult to give a directed donation, but still, if we bump up the blood bank in any way, the indirect effect will be assistance to Katie.

We go home tomorrow (Saturday), and next week, Katie will spend most of her time at Richland Memorial. Tuesday is the all important MIBG injection and scan. This is probably the most important day. The assumption in this therapy is that her cancer will light up on the MIBG scan. If it does NOT, then she will not be getting this treatment. If it does, we have the green light. On Wednesday, she gets another central line (the doctor offered that he would put in two IV's or she could get another central line and she was pretty adament about NO MORE IV'S!), and have bone marrow biopsies and aspirates, then day 2 of the MIBG scan. On Thursday, she will have a CAT scan of her chest, abdomen, pelvis, neck and head, and day 3 of the MIBG scan.

There is a lot more information about what is going on, but this update is already a little too long. We have a lot to do, and precious little time to get ready. One thing we need is some ideas - by becoming radioactive, Katie also runs the chance of making everything around her radioactive. She wants to take a laptop into the room with her, but should it be touched by any bodily fluid, then we would have to put it in the trash. So, no beloved stuffed animals or expensive electronics are going into the room with her. See what I mean about boredom? There is a TV with a DVD player and a Sony Playstation in the room. We are thinking about getting books (paperbacks), puzzle books, coloring books...if anyone can think of anything else that would be easy to leave behind but still fun to have in the room, then let's hear it!

I think the best part of this trip has been the restoration of something I thought that we may have lost - hope. The doctors gave it to us by recommending and believing in this treatment, Katie gave it to us by laughing again, and our friends and family (including everyone just reading this update and praying) gave it to us by believing in us. We will drive home tomorrow and begin our plans for this next phase of our lives!

Love, Michele

Wednesday, July 25, 2007 2:39 PM CDT

Our trip to Pennsylvania was long and really uneventful. Katie had one of her better days pain-wise - interesting because we sat in a car for 12 hours! She was in a fabulous mood when we arrived in PA (at Beane & Tom's house) and I had to drag her to bed, because we got up very early.

Our visit this morning with CHOP was very interesting. Katie is a prime candidate for MIBG therapy - we think. There are still some questions out there, and we need to get her re-staged and rescanned before making any commitments to that therapy. However, they asked us to move quickly, and even offered to do all the scans and tests. Katie was having none of that. She really liked CHOP, but wants to have scans and tests done in South Carolina. She told the social worker her preference, and then patted her arm and said, "No offense." It was too funny.

There are too many things left up on the air right now, though, to commit to much more. Just know that I'm breathing again, and we all feel like we landed in the right place. I'll update more when I know more.

Love, Michele

Sunday, July 22, 2007 9:35 PM CDT

Hi, everyone. It has been a long weekend.

GOOD NEWS
Radiation on Friday went very well. Mike took Katie so I could work, and they had a 3 hour drive for 5 minutes of radiation. She also got a bag of treats from the radiation therapists, so she was very happy. They came home for a nap (love those afternoon naps in the quiet house!) She was actually feeling up for going out for dinner, so we did that. The pain was less that day.

Her arm pain is now almost gone! It is amazing. Saturday, Katie felt like shopping a little bit, so we went to a few stores (had to get the new Harry Potter book!) and came home. Erika and I left to go to the grocery store, and Katie took a nap.

BAD NEWS
Friday night, Katie woke me to tell me that her head really hurt. There is a noticeable, painful bump there and when she laughs or moves her head quickly, it really hurts. Then tonight, she showed us a new lump below her knee. She is running low grade fevers, and she took a 5 hour nap yesterday, then went to bed for the night. Today, she got up for lunch (skipped breakfast), slept all afternoon, and got up for dinner, then went back to bed. She didn't have pain meds all day today until this evening, and she took them more for the pain in her head.

We are so worried these other bumps are more tumors, and that this disease has begun to boil. Katie will have radiation again tomorrow and Tuesday, then we head to Philadelphia. She has been in a terrible mood (snapping at everyone - including us, but mostly Erika), nothing suits her...I can't blame her but I also can't let her get away with it. It's so much fun disciplining a 13 year old with rampant cancer who is in pain - NOT. That's the kind of thing that makes my stomach hurt. And seeing that grimace of pain when she turns her head. The occasional glimpses of the real Katie are what I keep holding on to...like tonight when we were eating dinner and Mike said something silly that Katie and I rolled our eyes about (I can't even remember what it was!), and then we laughed...it is moments like that that I desparately need right now.

Mike is taking our desktop computer in to the computer store while we are gone - we are having some problems. If I can update the website from the laptop, I will. Otherwise, we'll let everyone know about Philadelphia when we get back (probably July 28th or 29th). Thanks for all the prayers and notes on the guestbook!

Love, Michele

Thursday, July 19, 2007 5:52 PM CDT

Late Tuesday night, we heard from the doctor in Philadelphia - he wants Katie out of pain now, and wanted her in radiation right away. On Wednesday, I scheduled the appointment in Philly for Wednesday, July 25th, and we made an appointment for radiation for Thursday (today). We also found out that of course, our insurance company has denied our visit to Philly so yet again we will fight Tricare.

So this morning, Katie and I got up very early to be at Palmetto Richland for radiation. When I woke her up, her face was contorted in pain. We gave her double the dose of pain meds (per the docs), and left for the hospital. I also bought a sling yesterday and that has helped a lot to keep her arm stable and not cause any pulling pain. It was actually a decent day. Katie is here with me, and she wants to help with the update.

MOM: So, how was radiation?

KATE: I still say I can smell something. I don't know if it was medicine or the machine, but it smelled funny and it was right near my arm too. Oh, radiation was good...ha ha.

MOM: Why do you like it there so much?

KATE: Cause they are nice to me and they give me presents.

MOM: Did you have a lot of pain today?

KATE: Yes. I have a headache right now.

MOM: Any naps today?

KATE: Yes, I took a nap with you, remember?!!

MOM: How could I forget, it was awesome! And quiet!

KATE: Until Erika got home...

MOM: You were pretty funny today - kind of loopy from the pain meds...did you realize that?

KATE: That's not funny. Yes, I realized that. I was just saying hi to people.

MOM: You were engaging complete strangers in conversation at the hospital. And then you had to go visit everyone we knew!

KATE: Well, if you never talk to strangers, Mom, you can't make friends.

MOM: Ready to go to Philly?

KATE: Yeah.

MOM: Scared?

KATE: A little bit.

MOM: Anything else you want to say?

KATE: Thanks everyone for the messages on the guestbook, and for all the prayers. Keep 'em up!

No bracelet loss today, (let me clarify my last post - I was the one who left the cup of bracelets in the gift shop - I carried them from MRI to the gift shop and just left them there!) a little bit of laughter, and lots of togetherness. Today is a good day - thank you God!

Love, Michele AND KATIE

Tuesday, July 17, 2007 7:35 PM CDT

The beast is back. We are still having a tough time actually acknowledging this.

The MRI this morning went very smoothly - other than being told to be there at 9:30 a.m. and Katie wasn't scheduled to be scanned until 10:15 a.m. Nice 45 minute wait for nothing. The scan itself was cake - Katie slept through the entire thing. If you've never seen an MRI, they are very LOUD. You have to wear ear plugs. I was sitting in the room with her, with ear plugs in, and doing a puzzle book, and I couldn't concentrate. Yet Katie slept through the whole thing.

The MRI is run on very strong magnets, so you have to remove all your jewelry before the scan. Katie was wearing her 8 Camp Kemo bracelets (little metal hooks with beads on them), so we took them off, and the techs put them in a cup for us (this becomes significant later). After the scan we headed to the gift shop for a little something, then checked out the cafeteria, then we went visiting at Nuclear Medicine. It was great to see you all there! We'll be there officially soon, I'm sure, but in the meantime, it was just nice to see all of you.

After that, we headed back to the clinic, and then Katie sent me to fetch her lunch. While I was heading out to lunch, Katie's doc told me that he had reviewed the scan, didn't see anything too suspicious, but he wanted to talk to the radiologist first. The radiologist called after lunch and he showed me the scan. There is new tumor at the very top of Katie's humerus bone - not on the growth plate, but right underneath it. It is causing swelling around that area, so she is having a lot of pain.

And I took this news as calmly as I am writing this update. Seriously. Katie was in there with us, and she was visibly upset. I guess God put me in stay cool mode. After the news, we retreated to the chemo room (comfy chairs and a TV), while the doctors met for their usual Tuesday meeting - and topic #1 was Katie. We were asked to stay until the meeting was over so that they could discuss a game plan. When we got to the chemo room, Katie asked me to put on her bracelets. I couldn't find them anywhere. That's when nuclear meltdown happened. It was the cumulation of hearing that her pain was more cancer, and that her beloved Camp Kemo bracelets were gone. I believe she called me evil, irresponsible, and every other name in the book. And I didn't bat an eye. We called all over the hospital, and couldn't find the stupid bracelets.

Luckily, Miss Barbara was in - she is the mom of one of our nurses and she volunteers at the clinic. Amy, you will love this - she's Canadian! Barbara actually walked down to the gift shop and lo and behold - found the cup of bracelets. Thank God. So, Katie has her bracelets back. Attitude slightly adjusted - slightly.

Before the meeting, my suggestion was to consult with a doctor at Children's Hospital of Philadelphia (CHOP) about what to do next. CHOP has several open NANT trials (New Approaches to Neuroblastoma Therapy), and we would like to see this doctor. Guess what the recommendation from our doctors was? Consult with the doctor at CHOP. They had no other ideas.

Katie is in pain, and wants it to go away. We may do some radiation for now to help, as long as that won't interfere with any other treatment.

I don't know what else to write. Katie is stressed, and is very worried. We don't have a plan right now, so we are right there with her.

Thanks for all the notes on the guestbook and our e-mail. I'm having a tough time responding to things right now, so forgive me. I'll let you all know more when we know more.

Love, Michele

Monday, July 16, 2007 8:37 PM CDT

Hi, everyone.

Sorry it's been so long since I updated. The girls had a wonderful time at Camp Happy Days. There was a little complaining about the bathroom conditions, but overall, they had a blast. Amy posted some amazing pictures of Katie on the guestbook - go check them out. Katie wanted to come home, but just for her TV and bed!

The girls came home on the 7th (Saturday), and Mike came home on the 8th. Katie finished round 6 of her chemo on Saturday, and she was understandably tired. She wanted to rest - a lot. On Tuesday, the 10th, she started to complain about her upper left arm hurting. We thought maybe she slept wrong, or hurt it at camp...it wasn't too bad, and she still wanted to do things, so we just chalked it up to an unexplainable little muscle ache. That's my delusional side talking....

So each day since then, the pain has gotten worse - and her fatigue has gotten worse. She is sleeping 12 hours at night, and taking naps in the morning and the afternoon. Anyone who has known Katie since she was a baby knows that is not her - she announced when she was four that she was NEVER taking a nap again. I swear that is how she learned her ABC's - at her day-care, so she wouldn't interrupt the other kids during naptime, she would sit in the office and do filing.

By this weekend, she could barely move her arm, and the ibuprofin wasn't cutting the pain. On Sunday, we switched to oxycodone, and that helped, but then the low grade fever started. Oh, crap. Still delusional, I was trying to convince myself that this was just nothing...heck, all the relapses have been on the right side and this is the left.

Today Katie had her regular appointment at oncology, and she was supposed to start her next round of chemo. Her blood counts are perfect, but her arm is not. She was miserable at the clinic. They sent her for a CAT scan, and we lounged around for the results. I kept avoiding eye contact with the doctor, because I really didn't want to know. But the news was no news - the CAT scan really didn't show anything - they called it "inconclusive." So, tomorrow, Katie has an MRI. And right now, she is knocked out on pain meds and running a fever of 101 degrees.

There was some good news today - her weight is up just a little bit more, and she is right where she needs to be in that department.

We've been talking a lot (Katie and I) about how much fight she has left in her. And she really does have a lot of fight left. She only has one requirement - whatever treatment we do can't hurt. She is tired of pain. If this pain is from more cancer, we have alternatives. I learned all about them two weeks ago. I just hate that she has to switch gears again.

So, please keep us in your prayers. It feels very much like last March - with the false starts - lots of pain but no explanation. Let's just hope that it doesn't take three weeks to figure out what this is. It is breaking our hearts to see her so miserable.

Love, Michele

Wednesday, July 4, 2007 9:36 PM CDT

HAPPY FOURTH OF JULY!

Also, Happy Anniversary to my hubby....today is the 20th anniversary of our first date! I can't believe it has really been 20 years - quite an adventure, huh? If 20 years ago someone had told us that we would be living in South Carolina, parents of two beautiful girls who look nothing like us, and one was fighting a horrible illness, I would have told them they were crazy! I guess when your first date includes fireworks, it sets a trend for the rest of your lives! I love you, Mike...

The Children's Neuroblastoma Cancer Foundation conference was amazing. I still haven't processed all the information we got there (Diane, I saw your message - I'll post more when I have a chance). It was all emotions wrapped up into one - encouraging yet discouraging, happy yet frightening...The best part of the whole thing was meeting people who were just names on the computer. The children were great - those that slowed down long enough to say hello - and we had two teenagers speak that just brought down the house. It was my first experience, but certainly not the last. Thank you to Pat Tallungan for her relentless energy and for everyone else that worked so tirelessly to get this conference together.

The girls met me at the airport, and then Mike headed to PA for his vacation (his plant closes this week), and I took the girls to Camp Happy Days. They were a little late, and none too happy about it, but they got over it when they got there. They don't call me at all when they are gone, so I hope they are ok! The weather has actually been pretty pleasant, but the temperatures are about to ramp up at the end of the week. I am actually to the point where I'm tired of our girls being gone, and will love to have them home. There are no great big adventures planned right now for the rest of the summer, but I'm sure we'll find something to do.

Katie continues to look and feel fabulous. When she picked me up at the airport, she was so energetic, and ready to go to camp. She had just finished her chemo that week, and was starting another week on it. Fifteen months after relapse and she continues to fight so hard.

Take care, everyone.

Love, Michele

Monday, June 25, 2007 5:57 PM CDT

Hi, everyone. Things are still good in the Krize house! Katie had an appointment in oncology today. It went very well - we don't have her blood test results yet, but she looks fantastic. Her weight is up to 85 pounds. She has been eating like crazy today, and she hasn't been on Megace for six days now. She has a little pot belly, and her face looks so filled out and gorgeous.

The plan is to continue this chemo until she can't tolerate the side effects, or she progresses. I discussed the scans with her doctor and the results are amazing - even better than we thought. The cluster of lymph nodes in her right armpit and neck are gone -there is only one remaining. The other identifiable nodule is in her left lung, but it is so small, it's impossible to tell what it is. It's like a speck of dust.

On Thursday, I am traveling to Chicago for the Children's Neuroblastoma Cancer Foundation national conference. The entire family is invited, but Mike has to work, and Katie is sick and tired of running around. Plus, they have Camp Happy Days on Sunday, so she really doesn't want to fly to Chicago on Thursday, fly home on Sunday and head right to camp. Instead, they will pick me up at the airport and we will all go to Camp together. I'm really looking forward to this conference - and I can't wait to meet some people I have been e-mailing and chatting with - some for eight years - about neuroblastoma. It's such a rare cancer that even though we know a few families here in SC, the majority of our contacts with this specific cancer come from an ACOR listserve (ACOR is the Association of Cancer Online Resources).

Poor Erika had two teeth removed today and she was miserable most of the day, but I think she is feeling better. She is hiding from Mike under my feet at the computer desk right now, being silly.

Take care, everyone! Enjoy the new pics!

Love, Michele

Wednesday, June 20, 2007 4:11 PM CDT

It's been crazy here - my work especially. However, WE HAVE GOOD NEWS. Katie's scan was on Monday. I won't go into how horrible the experience was (Katie's oncologist ordered the wrong scan, Mike had to fix it, then radiology claimed he had left the building when he was sitting right there...ok, I went into it...) Anyway, she did awesome, and even though we STILL have not heard from her doctors about the scan, we got some inside information.

Katie still has two tumors - one a lymph node with neuroblastoma and one a tumor in her upper lung. Both of them have shrunk significantly even from the last scan! The lung one is only 1 mm! We are all thrilled.

Camp Kemo was awesome. Katie was on chemo the whole time. One of her doctors made me laugh - I was worried about it and he reminded me - duh - think of the name - kids do chemo at camp all the time. The girls were awesome when we picked them up - no meltdowns this time, and they were in great moods.

We are on our way to Charleston right now - they are going to the lake and to Carowinds the next three days with Flash and Courageous Kidz (they were the ones who sponsored Katie's Day of Magic last November). The bus leaves out of Charleston and Flash graciously offered us a hotel room tonight because they are leaving at 7:00 a.m.! Thanks, Flash. You ain't right. That's a big compliment to Flash.

Katie continues to have side effects, but they have been manageable. Her weight gain is getting a little out of control. She is now more than 82 pounds - up from 68 pounds at the beginning of May. We have backed off on the drug that is helping her to eat. She's a little ticked about it, but she looks awesome. We have to leave in a few minutes, but maybe in the next few days I'll post some recent pictures.

Thanks for all the prayers and support.

Love, Michele (and Katie who is reading over my shoulder)

Sunday, June 10, 2007 2:53 PM CDT

I can't believe it's been a week since I updated! Things are ok - a few blips here and there but otherwise a good week.

Monday night Katie announced that her cancer was back. It was disturbing. Her reasons: pain in her arm, and when she breathes in, and that skin darkening again. It made for a sleepless night. She has also been running that low grade fever. Tuesday morning she had a doctor's appointment, and that went well. She discussed her concerns with her doctor, who gave a thorough examination. Since scans are on the 18th, and she has Camp Kemo tomorrow - AND, he felt like after examining her she looked awesome, we aren't going to scan early.

And best news of all - she has gained 8 pounds in a month! Now she weighs 8 pounds more than Erika - woohoo. She is obsessing over food because of the Megace (the drug to make her eat). I told her it is like living with a pregnant woman. We are at the grocery store every single day buying something else that strikes her fancy. She has eaten three boxes of Kellogg's Corn Pops a week. She's also into string cheese. She plans our life two meals ahead.

Katie's blood counts came back perfect, and her white count was slightly elevated, so now we think she is fighting a virus. On Thursday, she spent the day up at Beulah Land with Dawn (and Erin), and had a wonderful time - fishing, riding horses. She was grinning ear to ear when we got home. We also went to Baker's graduation cookout, and she ate two huge cheeseburgers. By Friday, she was whipped and she took a nap in the afternoon. This didn't concern me too much. But when she laid down for a 3 hour nap yesterday afternoon, I got concerned again.

Fever, fatigue, pain...it's an all too familiar scenario. This week the worry gets set aside though, because Camp Kemo starts tomorrow! This camp is in Batesburg-Leesville, SC, and this is Katie's 8th year! I swear she is trying to set a record. Kids get to go to Camp Kemo until they are post-5 years out of treatment. So, Katie's last year was supposed to be two years ago. Then, she relapsed - so she gets five more years! Jeannie, the director of Camp Kemo, overheard some kids talking at camp once about not coming anymore once the five years are up. The other little girl said, "Well, all you have to do is collapse, and they'll give you five more years." Too funny.

Erika had a big week too. She has misbehaved so much at the Y that she hasn't had swim privileges all week, she needs a tooth pulled and a root canal, and she got her first pair of glasses! She gets to go to Camp Kemo, too - quite a break for Mike and me.

I probably won't update until after the 18th. That's when scans are, and we'll know what is going on. Katie started her fifth round of chemo (oral irinotecan and temodar) on Wednesday, June 6th - she takes it like a pro. Take care, everyone.

Love, Michele

Sunday, June 3, 2007 6:58 PM CDT

It's been a long week...

Katie left last Tuesday for Red Carpet Days in Atlanta. I didn't hear from her much that day, but that evening, I got a message on my cell phone (I was away from it for a minute, of course) - Katie sobbing, wanting to come home, telling me she was all alone. Her hotel roommate had gotten sick, and when the counselors asked her if she wanted to stay alone, she said that was fine - until the door closed and she freaked out. I got that problem fixed and got her some roommates(and it should never have been a problem since a child who just turned 13 shouldn't have been left alone in the first place, but we won't go there). Wednesday was ok - she barely called, then I heard first thing Thursday morning that she had slipped a note under her counselor's door that she wanted to go home. I would have left in a minute, but after sleeping the rest of the night she decided to stick it out.

Katie never, ever does this - she has been going off and leaving us since she was a little girl. My heart just ached all week for her. I had already arranged for one of her friends to spend the night that Friday after I picked her up. When I got picked her up on Friday she was very, very quiet. Too quiet. She told she had some fun, but all she wanted was her bed. We picked up Lakin (her best buddy since Lakin was born), and at first, I thought it would not be a good thing. But Lakin really cheered her up, and it was like night and day - thank goodness.

Saturday, we picked up two more friends and finally headed for Katie's birthday party - a night at Embassy Suites, shopping, and the Columbia Marionette Theater. A little something for the little girl in her, and a little something for the teenager. It was a really good time - Erika and I got to go, too. The girls were all so sweet. I was finishing up dinner at the Food Court, and the girls took off ahead of me for Claire's. I saw Katie walking with her girlfriends, laughing, with her purse on her shoulder and bags in her hands and it just made me cry. I think I admit too many times on this journal that I cry, but I do. And it's watching all the normal things.

Oh, and so far, so good - health is good, no problems. Right now, she is running a low grade fever and has a little bit of a sore throat, but after the running around this past week, no wonder. Katie is curled up under a blanket, watching TV, and comfortable.

Katie said two things this weekend that made me laugh until my stomach hurt. Since we were hanging out with all her girlfriends, and they are right around the 13 mark, of course, they talked about boys. Katie professes to hate boys and think they are all icky (except for Garrett, who isn't really a boy, he's just a friend - sorry Garrett), told me that all boys are good for is to carry your bags while shopping. I loved that one.

Then at dinner the other night, while discussing boyfriends, and marrying people (they are so curious about why I married Mike!), when Katie said she was never going to have a boyfriend or get married. We asked why, and she said, "Because Democrats don't have boyfriends!" I think I spit my food all over the table. I have no idea where that came from, but it was hysterical.

Katie has an appointment with her oncologist on Tuesday, and then she should start round 5 of her chemo. This week she has something very special planned for Thursday, and then on Monday the 11th is Camp Kemo! The girls are totally psyched.

Take care everyone.

Love, Michele

Monday, May 28, 2007 8:47 PM CDT

Hi, everyone.

Happy Memorial Day. This is always a special day in our hearts - we have many, many family members who have served in the Armed Forces.

Things have been good here! We managed to sneak away to Florida for a few days. It was so wonderful to travel! Friday was Katie's birthday, and she spent it with a friend, and then we took her out for her favorite dinner - shrimp AND crab legs! She was humming. We left early Saturday for Florida, and took our dogs, which was a first. They were great, though! They were so well behaved both in the car and at Nanny and Pop Pop's.

Sunday was Nanny's birthday - we had a cookout, birthday cake, and presents over at Aunt Sandy's. Tim (my cousin, Sandy's son - also in the Air Force in Florida), and two of his children - Becky and Jessica - were there to celebrate, too. My mom made a great point - she and my dad are the godparents of both Becky and Erika- so she was celebrating with her goddaughters, too. We had a fun time.

The trip home today was pretty easy. We were nervous about the traffic, but I really believe God was following us all the way home - it was no problem at all.

Katie has had her teenage moments - I swear it's like a light switch the day she turned 13. She leaves tomorrow for Atlanta for Red Carpet Days - it's a teen cancer group outing in a bunch of cities nationwide. I bet it will be on the news this week. Just look for our girl's sunshine smile. She is supposed to start her chemo this week, but we are giving her an extra week off just to enjoy life a little bit.

The past few weeks have been so good. When we got to my parents house, we just couldn't believe it had been so long since we were there. Usually, we go to their house 4 or 5 times a year, but the last time we can remember being there was almost 2 years ago. Too long.

Take care everyone, and have a good week.

Love, Michele

Sunday, May 20, 2007 7:23 PM CDT

Hi, everyone.

We have had a very busy weekend. Katie stayed home Friday because she was in a lot of abdominal pain. She slept most of the day and stayed in during the evening. I think she was resting up for this weekend!

Saturday we went to Bennettsville for Stacy and Andrew's wedding. We had a great time - Stacy, you were a gorgeous bride, and Andrew - I almost didn't recognize you in that tux! We really had a good time, and your special touches at the reception just showed how much the two of you love kids. Stacy and Andrew were both Katie's counselors at the YMCA. Katie was really worried about Stacy recognizing her because she was wearing a hat - kind of funny. On page 2 is picture of Katie and me at the wedding and you can see her pretty outfit and hat. Congrats, you two!

Today we had fun in Columbia at a baby shower for Sandra. Little Bree should make her debut in July. It was awesome to see everyone today, and it really made me homesick for the past when we got to see the Studleys on a more regular basis. Sandra was Katie's "sister" - Sandra is Monika's daughter - Monika was Katie's foster mom. Bree will be Monika's 11th grandchild - unbelievable! Sandra and her twin Diane are the sisters I never had - I miss you guys so much!

The picture above and the picture with the baby on the second page are both from today. The other picture on page 2 is from Mike's 44th birthday. Katie's hair is really gone now compared to that picture. She has a major bald spot in the back of her head, and won't be without a hat or a bandanna anymore.

Katie's potassium was fine the other day, and she is eating a little bit more. This is the last week of school, and she swears she is ready for exams...hmmmm....

Have a great week, everyone.

Love, Michele

Tuesday, May 15, 2007 5:16 PM CDT

OK, OK, OK! Here's an update!

Katie is sitting here with me. She's going to help with this update. Tonight, Katie starts her second week of oral irinotecan, and last week, she took both that drug and her temodar. Plus, she started on Megace - a drug that is supposed to stimulate her appetite.

MOM: So, Kate, how are you feeling?

KATIE: Hungry!

MOM: For what?

KATIE: Crab legs.

MOM: Think John David and Debbie will bring us some of those?

KATIE: Maybe if we ask nicely, or persuade them.

MOM: You are getting to be an expensive date, you know that? I almost wish you were back to not eating -ONLY KIDDING!

KATIE: You are silly, Mommy!

MOM: So how has school been?

KATIE: Good, I've been working in the library in the morning while people are taking PACT.

MOM: Katie doesn't have to take PACT because she is on active chemo. A big relief for all of us!

KATIE: Me, too!

MOM: Yeah, a big relief especially to Katie! But exams are next week, right?

KATIE: Yep. They are going to be big big humongous hard tests.

MOM: How are the chemo side effects?

KATIE: Good.

MOM: No abdominal pain, or that other thing you don't like for me to talk about (diarrhea)?

KATIE: Mommy!

MOM: I take it that is a no.

Next week is our last week of school (Katie says hooray!) - last day is on my birthday (Wednesday), then Katie's birthday is Friday, and my mother's birthday is Sunday. And it is Memorial Day weekend! The day after Memorial Day, Katie goes away for a week to Red Carpet Days in Atlanta. It's a teen cancer event and she gets to go to Six Flags and have all sorts of fun in Atlanta. (She just said, "No more huge roller coasters for awhile.")

With the side effects more manageable, her total recovery from the Heely spill, and this beautiful weather, things have been good here. The sun is shining on the Krize house! No oncology appointment until June 5th, and scans again on June 18th. Unfortunately, Katie's potassium is low, so we are pushing potassium rich foods and Katie has to have a blood test tomorrow at McLeod. She is not happy about that. We'll take it though - much better than the past!

Thanks as always for all your support and prayers. We really, really appreciate it!

Love, Michele

AND KATIE!!!

Monday, May 7, 2007 9:11 PM CDT

Hi, everyone. Katie had a great time at camp - it was in Latta, SC! That isn't too far away - it takes us about 40 minutes to get there. It is on the Beulah Land Plantation. You can check out their website at www.campdebbielou.org. There was no swimming at all, Phyllis! They were cold. But I heard that Katie was fishing up a storm, and her driving skills on the go-kart track were legendary. Katie caught the biggest fish, and there were guys there wanting her to cast for them. She loved it.

When we got there Sunday morning, she was being chased around by two boys. She "claims" she can't remember their names - yeah, right. I'll have to get the scoop from one of my spies there. Katie also ate all weekend - my spies did tell me that!

Sunday afternoon, Katie and I snuck away from Erika and did our grocery shopping. Of course, she talked me into a bunch of other things. But it was so nice to be with her -just the two of us. Erika and I spent the day together on Saturday. We went swimming - and Erika seriously impressed me. She can swim and dive like a dream. I taught her how to back stroke, and now I'm trying to convince her to go out for the YMCA's swim team. She keeps changing her mind - so if you want to encourage Erika to do that - just leave a note on the guestbook or send us an e-mail. It would be so great for Erika to have something like that all of her own.

Sunday evening, the girls went outside to play with their neighborhood friends, and I was finishing up laundry and the usual chores. Erika came in and I threw her in the shower. Once she was in, I heard all this yelling downstairs, so I came running down and saw Katie crying hysterically and with blood all over her. She fell while she was rolling on her Heelys (skate shoes). Garrett helped her up and got her in the house - he was pretty calm, but Katie was a mess. She had a hole in her forehead that was bleeding, her hands were a mess, and her knee and leg hurt - all on the right side. I cleaned her up, but she was really hurting.

Luckily, today, she had an appointment with her oncologist, so she was checked out thoroughly. Everything is fine. She felt much better today - sore, but better. Katie will start round 4 of her chemo tomorrow, and she is also starting on Megace - it's a steroid that tricks the brain into thinking that you are hungry. Katie used this drug 7 years ago after her stem cell transplant when she got down to 37 pounds (at 6 years old). Seeing as she is now 12 years old and only 69 pounds, it is time again. Even Katie admitted it. She has done so much better with the abdominal issues with the reduced dose of chemo, that it is time to concentrate on getting some more calories into her.


Katie's hair continues to slowly come out. It's almost worse than watching it all come out at once. She has a big bald spot in the back, and has again resorted to bandannas and hats.

Katie's big 13th birthday is coming up - May 25th. It makes me feel so old! And with Erika turning 10 in October, both of our girls will be in double digits. And I swear, John David, if you make one more silly comment about my age....

Have a good week everyone. This is the second to last full week of school for us!

Love, Michele

Thursday, May 3, 2007 7:02 AM CDT

Just a quick note. Katie is doing pretty well. She picked up a cold, and had to come home yesterday at 10:30 a.m. (she was sneezing and had a very sore throat). Some Sudafed and rest seems to have done the trick and we are getting ready to leave for school this morning.

The abdominal issues are much, much better on the reduced dose of the chemo. Now if she would only eat a little more, but we are working on that. Katie leaves tomorrow for Camp Debbie Lou with her teen cancer support group - she'll be back on Sunday.

Katie is reading this over my shoulder and wants to tell everyone that she says hi. Have a good day, everyone!

Love, Michele
(and Katie!)

Friday, April 27, 2007 4:48 PM CDT

Katie is almost done with round 3 of this chemo, and the reduced dose seems to have helped some. She missed school yesterday with abdominal pain, but she went to school today and says she feels pretty good. We are going out for Mike's birthday (he turned 44 on Wednesday!), and she is actually excited to eat!

The best news of all is that Katie made Blue Notes! The smile on her face was the best. She told me this in the car on the way to pick Erika up from the Y, and she was literally dancing in the car. I could just feel her excitement. I almost believe she wishes 8th grade started next week! Her favorite color is Blue, now she is a member of Blue Notes - and they get to wear tuxedo shirts with blue sparkly suspenders and blue sparkly bow ties at performances.

Speaking of what to wear - Katie is definitely a non-conformist. Today she wore Christmas toe socks with blue flip flops to school. She told me she could care less what everyone else thinks. You go, girl.

Have a good weekend, everyone. We are hoping for no, or minimal side effects, and some fun...

Love, Michele

Tuesday, April 24, 2007 10:38 PM CDT

So far, so good. Katie started chemo again this evening after a two day break. She had a GREAT day. School was good, and this evening was her spring concert at school. On the way there, Katie warned me that I was going to cry - apparently, there was something in the program that was going to start the tears.

We got there and right in front of us....it said this:

"'Ain't No Mountain High Enough' from 'Forever Motown' is dedicated to one of our own chorus students, Katie Krize, who is currently undergoing treatment for cancer. Katie has been a dedicated chorus student and likes to be at school when she is able. She loves being in the Southside chorus. This past March she participated in the District One All-City Chorus. We hope Katie feels well enough to be here for the concert tonight."

Well, to say I cried was an understatement. Erika asked me to read it to her, but I couldn't. I pretended like I was just encouraging her to read...but really, I couldn't read it out loud. During the concert, Ms. Perkins, Katie's chorus teacher, read this and Katie gave this cute little wave. Then, for the finale, they sang that song from High School Musical and danced. Katie danced her little heart out. Katie was going to sing "Ain't No Mountain High Enough" for an audition for our school district's musically gifted program. She decided at the last minute not to try out - too demanding if she was gone all the time - but she just adores that song.

Instead, tomorrow, Katie is trying out for Blue Notes - kind of a small chorus that meets after school on Mondays. Only 8th graders get to be in Blue Notes. She is so psyched about that. After the concert, I hugged Ms. Perkins and thanked her for everything - really, being in chorus has meant the world to her this past year. She really has enjoyed every class she has - not just chorus, it's just singing and music have always given her great comfort. And now on Katie's website, I will thank her again - you have been wonderful, Ms. Perkins! And for the rest of Katie's teachers - thanks.

I put two pictures from tonight's performance on the 2nd page - one of Katie dancing and the other with Katie, her friend Tiffany, and Ms. Perkins. Take care, everyone.

Love, Michele

Sunday, April 22, 2007 8:08 AM CDT

I almost hesitate on posting a message on weeks like this because it seems like I will say something along the lines of "things are good" and then whammo, something happens. Here goes anyway.

Katie had an entire week in school! Can you believe it? She had a wonderful time and seemed very happy to have a normal week. Tuesday was meltdown, time, though. She left her school ID in Mike's truck, and of course, by the time she got up for school and remembered, Mike and his truck were in Marion, SC. Mike works about 40 minutes away from home. I had a mediation to attend, and there was no way we could waste that much time getting the ID. Katie just sobbed. She declared it was the worst day of her life because she was going to get written up. I couldn't help but laugh - uh, on the list of bad days, this wasn't even near the top 100. That made her even madder. When she called me after school, she didn't even mention. She got a new ID, everything was fine, and she wasn't written up.

Wednesday night we were watching American Idol, and Martina McBride sang that beautiful song, and I just cried. Katie came downstairs at the end of the song, wearing the sling she wore when she was first diagnosed and her arm hurt so bad. I cried even harder, thinking that her arm was in pain again, and it was her turn to laugh at me - she found the sling, and just wanted to try it on.

Last night, she spent the night away from home with a friend. Katie came back to pick something up, and she was just so happy. Her hair is really coming out - not like last time, it is just thinning like crazy. She has a bald spot on the back of her head and thinks it is time for bandannas again.

OH! And the reduced dose of the chemo! It seems to be helping, but we'll have to see the next two weeks. She is still uninterested in food, but it seems a little better. She is eating a little something for each meal, and I saw her eat a snack. Yesterday, she wanted to cook with me so we made pull-apart cinnamon bread and homemade ice cream in my new ice cream maker. She didn't try one bite of the bread, and she had a tiny bowl of ice cream with chocolate sauce and sprinkles. It's better than nothing! She's only had diarrhea once this week, and the abdominal cramps have been tolerable.

I hope she has another good week at school, although this is the week when the side effects really start. Thanks for all the notes on the guestbook. Amy - that picture is hilarious. We just got the packet from Happy Days yesterday for camp this year, and the girls official camp pictures were in there - if Mike can scan them, we'll post them. It is unbelievable what Katie looks like 35 pounds more than she is now. Amy's picture is a perfect example.

Take care everyone.

Love, Michele

Monday, April 16, 2007 6:50 PM CDT

Hi, everyone.

Katie had an appointment at oncology today and we have a new plan. Last night, late, I stayed up and composed an e-mail to one of her oncologists about how happy we are with the results of this chemo, but how distressed we are at Katie's "quality of life" - those cute little cancer cuss words, as I call them. Sure, her tumors are shrinking but in the process so is she, and she spends half of a three week course in bed in pain.

Anyway, we came up with a this: we are going to reduce her dose of the one chemo that is giving her all the problems (irinotecan), and see how she does. If that works, we'll just keep doing that. If not, then Katie will most likely have to have another central line or a port-a-cath and she will have to get this chemo that way (by IV, not orally). Another central line means no swimming and no showers and huge chances of infections. A port means access by a needle, but she can swim and take showers. Ports are under the skin and central lines extend out of the body. While Katie still isn't fond of needles, we seem to have convinced her of the port. If she gets the port, then she would get the first dose of chemo at the hospital, then the subsequent doses at home. And - we could get her on some type of artificial nutrition if necessary.

I feel a lot better about things. Katie went to school today until she had to leave to see the doctor, and every time I have spoken to her she seems like she had a good day. If I had taken her, we would have been home by now, but Katie and her Daddy are out wandering - she has probably convinced him to buy her bribe gifts, and to take her to Sumter for a salad. Grandpa and Aunt Cathy - kind of reminds you of our wedding day, huh? Who knew Katie would be like Judi?! (Mike, who has no concept of time, took off on our wedding day to Allentown - 45 minutes away from our home - to pick up Judi's camera - Judi is one of his sisters who, just like Mike, has no concept of time. We were completely convinced that they would show up hours after our wedding was supposed to start, just amazed that anyone would be upset with them...they actually did make it back in time).

Erika and I spent our evening together. She has been very into asking questions lately - deep, thoughtful questions about her adoption and Katie's situation. She told me she doesn't want to be an only child - that she loves being the little sister. Her prayers will break your heart - she just begs and begs God to make her sister healthy again. At one point this weekend, though, I had to separate them because they were beating the tar out of each other. They are true sisters - maybe not biologically, but in every true sense they are sisters.

Take care, everyone!

Love, Michele

Sunday, April 15, 2007 7:31 PM CDT

Food has become the new hot button issue - well, the lack of it. This is what Katie ate today: a yogurt, half of a ham sandwich, two packets of fruit snacks, and a piece of string cheese. And all of this was after begging, pleading, moaning, and crying from Mike and me.

Yesterday, we finally got out of the house and did some shopping, but you can tell Katie's energy level is pretty low. Still, we had fun, and we even went to Chuck E Cheese. Katie loves the pizza there, but she ate one piece, then I found half of it in her napkin. She said the funniest thing yesterday. As we were leaving, I bought her a Chuck E Cheese gumball machine. She was standing next to me - and believe it or not, she was offering to pay - and she looked in her purse. She had two bottles of medicine - anti-nausea and anti-diarrheal and she said, "How pathetic - I'm like some old woman carrying around her medicine in her purse." The way she said it was priceless.

Spring break is over, and tomorrow starts the last stretch of school before summer. Katie has a doctor's appointment tomorrow afternoon, and she will probably start her next round of chemo on Tuesday. We would love to give her another week of a break from chemo, but we mapped out when she would have chemo and when she would feel bad, and because of her two trips in May, and Camp Kemo in June, we have to keep on schedule. Her counts are perfect - it's not that - it's just her poor gut.

Have a good week, everyone.

Love, Michele

Wednesday, April 11, 2007 10:08 PM CDT

Today has been one of those days as a cancer parent that are just unforgettable. Each high and low of this day are representative of every day living with this monster called neuroblastoma.

We got to Richland Memorial in Columbia at 8:30 a.m. after driving through torential downpours, and with me having to drag Katie off the toilet because she is still having terrible diarrhea. She slept all the way there, thank goodness. The stick for her IV actually went pretty well, and we had a good experience at CAT scan. She was hysterical about the needle stick and the potential to use the injection machine during her scan. As soon as the techs realized she was sobbing about the injection machine, they agreed not to use it. Usually, there is a big argument, with other techs insisting that Katie is just going to have to get over it. These two today were phenomenal and caring, all we could ask for. They even gave her a teddy bear and a gift certificate for the gift shop.

We headed to the clinic afterwards. Usually we wait a few minutes before being called back, and Katie heads off to chat with people we know - that's where I thought she was going. Instead, she ended up in the intake room, telling everyone she felt like crap and wanted to see a doctor NOW. It was pretty funny. A nurse came to get me, telling me she had already had her vitals done (high heart rate, higher than normal blood pressure, lost another 4 pounds, but normal temp), and that the resident was ready to see her. I have to send Katie on recon more often!

After both the resident and oncologist took a look at her, they decided on bombarding her with fluids, and possibly making her spend the night depending on how her blood work checked out. Sure enough - it was wonderful! Her counts are great - you really can't tell she is on chemo. Her only problem is this massive GI upset from the chemo. We had lunch with the docs and nurses (she had to have tacos from Casa Linda even though the only thing she has eaten in two days is a grapefruit (half two days ago, the other half yesterday). So, we ended up getting everyone Mexican food, and had a feast in the conference room. We had a great time there.

While we were there, the oncologist gave us the great news - Katie's scans show improvement! The cancer is not stable, it is not progressing, it is actually shrinking! We were so thrilled to hear this. I had been fully prepared to hear the opposite, so I think I had a delayed reaction. After leaving the clinic, I was so exhausted, so I got a cup of coffee to get us home. I managed to do that, but Katie slept all the way, and when we pulled up at home, I just sat in my car, and couldn't move. We stayed that way for 15 minutes, then I had to take a nap before we could go out for dinner.

Katie has continued to have diarrhea today, but her abdominal cramps have lessened. The fluids really perked her up, and she was actually talking to us today.

When I get time on the computer, I usually do a series of checking up on children that are in Katie's situation. One of those children is Kendall...Katie's cancer, neuroblastoma, is relatively rare, and for the past 7 years, I have belonged to an internet listserve of parents like us. I "met" Kendall and his family on the listserve, and we have gotten to know each other and support each other. Kendall passed away this evening. Two days ago, on Easter Sunday, he had managed to leave the hospital to go to church. That is just how quick and devastating this cancer can be. Kendall is a twin, and the boys were approaching their fifth birthday. Their mother, Aimee, has been a constant friend to me in this journey. Kendall's had a heroic spirit and now he is no longer in pain.

So, the ups and downs continue...I don't know what else to write at this point. Katie will start round 3 of her chemo on Monday, and we are hoping her abdominal symptoms keep improving.

Love, Michele

Monday, April 9, 2007 8:42 AM CDT

Good morning, everyone.

Hope everyone had a good Easter. We did, if you look at the big picture! It was wonderful having Nanny and Pop Pop here. They brought a fun new game, and we had a lot of laughs playing "Whoonu." We also ate - constantly - and that was fun! Katie was the one who was pretty miserable. We all agreed that it was a good thing we didn't go to Florida.

On Saturday, we tried to go out and do some shopping, but all we managed to do was get some things from the farmers market and grocery store for dinner. Katie's abdominal pain was terrible and we got home about lunch time. She really just rested during the day and the evening, but did get up to hang out with us a little bit.

The Easter Bunny did come and left baskets and eggs all over the house for the girls to find. It was just too darn cold outside for an egg hunt out there. We all got dressed and went to church. The girls looked amazing - there are new pictures on page 2 of this website. Don't be so shocked when you see the pictures. It was so cold outside, and I wouldn't let them wear their coats for the pictures - so, they had to hug each other to get warm. It's not like they actually would hug each other :).

We got to church early to get a seat, and Katie was doing all right. Then, right before church started, she told me that she felt like her stomach was going to explode through her mouth. Mike took her home and made her comfortable, and sure enough, she threw up a little while later. After the rest of us ate lunch we all took naps - well, except for Erika who doesn't do naps. Our Easter dinner was wonderful.

Katie barely ate anything all weekend. She did perk up when her friend and our neighbor Garrett got home. She went to play with him, and it kind of annoyed me - she hadn't spoken to any of us, and didn't eat anything, but the minute he got home, the rest of us were toast. But my mom reigned me in - if that's what it takes to perk her up, then so be it. She told me I should just be glad there is something to perk her up, and if it is the G-man (that's what Katie calls Garrett), then let her go. And Mom was right (as always). Kelly and Rick are Garrett's parents - they read this update - guys - I don't know what it is with those two - they have always had such a connection since the day they met. I'm just glad she had something to smile about this weekend.

On Wednesday, Katie will have a CAT scan to see what this chemo cocktail is doing to her cancer. We are hopeful that things have either stayed the same or improved. If that is the case, then we can continue this course of treatment. If not, then we will be looking at other options. The abdominal cramps and diarrhea are not fun with this chemo, but at least we are home and together. Hope everyone else had a wonderful weekend. This is spring break week - Erika will be at the YMCA all week, and Katie will be home and/or with me...take care, everyone.

Love, Michele

Friday, April 6, 2007 3:03 PM CDT

Katie and Mom here again....thought we'd try the old dual update.

Mom: Where SHOULD we be right now, Katie?

Katie: Driving to Florida.

Mom: Where are we really?

Katie: At home, with hurt tummies.

Mom: Does that make you sad?

Katie: Yeah.

Mom: Anything gonna make you happy today?

Katie: Seeing Nanny and Pop Pop.

Mom: How was school today?

Katie: Good.

Mom: Did you overdo it?

Katie: Yeah.

Mom: Anything you want to add?

Katie: No. Not really. I'm going to bed now. Good bye.

Katie did not go to school yesterday, but she was bound and determined to go today, Good Friday. Yes, we had school - unbelievable. I stayed home and cleaned a little bit and tried not to think about all the work I left behind. I was really worried about Katie, too, and hoping that she would make it through the day. She did - but now she is in some serious pain. Good thing we didn't go to Florida. I'm sure the Easter Bunny will find us in SC.

I have to share why Katie wanted to go to school so badly. This week, her group JTI had something fun to do each day. I think it stands for Junior Teen Institute. Today, they wanted to make a stand against drinking and doing drugs, so they each picked a time to die. When it was their time to die, they laid down on the floor, and held up their signs about how they died (Katie was killed by a drunk driver). Then for the rest of the day, they wore tombstones and couldn't speak. She was so jazzed about this.

Now, I personally thought this was surreal. The other night, when her abdominal cramps were so bad, she told me, "I have to go to school on Friday! I have to be there to die!" It almost creeped me out given what she is facing, but I don't think she put the two things together. And, that they would do this on Good Friday..well, it's just been a weird day!

Have a wonderful Easter weekend, everyone. Ours will most likely be quiet, but at least we'll all be together. Take care!

Love, Michele

Wednesday, April 4, 2007 8:38 PM CDT

Katie had a tough day today. Last night at dinner, she began to have abdominal pain. Instead of eating, she went to bed. Then, at 3:00 a.m., she woke me up to tell me that she had diarrhea and that the abdominal cramps were really bad. We hit it right away with Immodium and some pain meds. I woke her up for school, but she was still in a lot of pain. I gave her more pain meds and she slept most of the morning, but then she threw up.

I just kept trying to switch up her medicines to see what would give her some relief, and she finally rested this afternoon more comfortably. This evening, she was actually a little better, and she ate some dinner. She hasn't had diarrhea since that first time, and I'm betting she is improving because of that reason.

This is just the side effects from her chemo. It's discouraging since things were going to well lately. Hopefully this is just a blip. She just went to bed, and definitely wants to go to school tomorrow. We'll see. I have a feeling she'll visit me in the middle of the night again.

Our trip to Florida is much more tentative now, but Mom and Dad will travel here if we can't get there. We all just so wanted to get out of South Carolina for a few days. Not that we have a problem with SC - we love it here - just everyone needs some different air.

Take care, everyone.

Love, Michele

Saturday, March 31, 2007 6:42 PM CDT

Hi, everyone.

Things are good - you wouldn't even know Katie is taking chemo right now. Thursday night Katie had the opportunity to sing in the All City Chorus, and she had a blast. The very last song was the finale to High School Musical, and they did the choreography and everything. I, of course, humiliated Katie by crying. Seeing her laughing with her friends, singing and dancing just made me so happy I had to cry. Thanks, Ms. Perkins, for letting Katie participate. What she lacks in time in school she makes up for in enthusiasm for music and singing!

We shopped a little today - have to stay close to home because of the possibility of that horrible diarrhea again - and we have discovered Katie is down several sizes. We did find a pretty Easter dress. I was secretly excited because last Easter she told me that she would never wear a dress again, but she picked this one out. We are hopefully heading to Florida for a few days to have some fun in the Sunshine State over Easter. Everything depends on Katie's health...

I've changed all the pictures again - they are all very recent! Katie has a doctor's appointment on Monday, and she continues on her oral irinotecan next week. Take care!

Love, Michele

Tuesday, March 27, 2007 9:14 PM CDT

Yesterday, we had a visit with Katie's oncologist. It was a good visit, and Katie had no complaints. Quite the turnaround from two weeks ago. She had a blood test, but since the results didn't come back until late, we decided to start her chemo today. The bloodwork was wonderful - all of her counts look great. We started the chemo tonight, just like it was nothing. She pitched a bigger fit about what I made for dinner than her reaction to the chemo she had to swallow. The fit was for real - she just made a face about the chemo. Katie is a rock star.

After our appointment yesterday, we stopped to see some friends. If you flip to the photo page, in the middle of the picture, you will see Jack Mason - he is seated with a green sweater on. Five days after this picture was taken during our weekend at Myrtle Beach, Jack had a heart attack and quadruple bypass surgery. He is still in the cardiac ICU at Richland, so Katie and I stopped by to see the family. They could really use your prayers right now. Having been through this with my dad, I know how they are feeling right now. And I am sure my dad can relate to how Jack is feeling!

Take care everyone.

Love, Michele

Sunday, March 25, 2007 5:30 PM CDT

Things have been good, sorry for no update. Last Monday, Mike took Katie to the doctor and we all decided together to give Katie a break from chemo for a week. Her blood counts were fine, that wasn't the reason, but her gut was not. Thankfully, this past week she had a normal week at school, and health-wise.

It was a very busy week for Mike and me at work, though, so I didn't manage to even get near our home computer. Saturday, the girls and I managed to get to Arts Alive at Francis Marion University, and we had a lot of fun, except it was 120 degrees outside! We were just wilting...

Today we just ran a lot of errands, and tried to catch up with laundry. Katie is waiting on me right now to make pizza - we are going to make some at home, and get ready for school tomorrow. Katie has a doctor's appointment tomorrow afternoon, and then she will most likely start her chemo again - both drugs - temodar and irinotecan. We would love another quiet week together!

She never did get a turtle (thank goodness!)

Have a great week, everyone.

Love, Michele

Sunday, March 18, 2007 6:52 PM CDT

We just had the best weekend - away from cancer! It was awesome. Friday night, we checked into the Mariott Grande Dunes in Myrtle Beach - gorgeous, new hotel, and we met our friends, Christy and Tobe Cox and their children, Reagan and Will. Christy works for the US Ambassador to Canada, David Wilkins, and the whole Canadian crew was there for Can-Am Days. The Myrtle Beach Chamber of Commerce invited us to spend the weekend with this whole crew...so much fun!

We had a quick dinner at a reception for that group, then headed to see Lonestar in concert! We even got to meet the band. Erika was most excited, though, to see Ed Piotrowski, who does the weather on our news station. She loves Ed, and is ticked at him for canceling a trip to her school while he was covering a hurricane in September. And she told him that when we saw him! She got the cutest picture with him, though.

The concert was actually good (not one of us is a country music fan - but this band was great). We got back too late to swim at the indoor pool at the hotel, and the kids made us promise that we would take them the next day. Saturday was lots of swimming (indoors, of course, it was FREEZING outside!), even though Erika jumped into the outside pool just to show off for the Masons. Jack and Judy are Christy's parents, and we had lunch with them, then sat on the beach while the kids played, collected shells, and even tried to make an injured seagull more comfortable. Christy and I tucked ourselves into the dunes to avoid the wind - it was so cold.

Saturday night we had dinner at Mark Kelley's house - he's a lobbyist in SC, and it was awesome. Not only does he have a great house, with great kids to hang out with, but we had great conversation - not all of which was about cancer. It was mostly about Canada and the US, and we learned a lot.

Today, we had to say goodbye to the Cox Family who were headed back to Ottawa, and then we headed out for breakfast and we were supposed to go miniature golfing. It was still way too cold, so we did a little shopping, had a late seafood lunch and headed home.

Katie did BEAUTIFULLY all weekend - no one could believe she had just spent a week on the couch in agony with stomach cramps and diarrhea. She had diarrhea a few times while we were in Myrtle Beach, but we gave her her meds, and she was fine. She swam twice on Saturday, and didn't even nap on the way home today (which is not what I can say for myself).

Tomorrow Katie has a doctor's appointment in the afternoon, and hopefully she will start round 2 of her chemo. She is going to school most of the day, and hopefully she'll be able to go every day this week.

Take care everyone!

Love, Michele

Thursday, March 15, 2007 6:23 PM CDT

Hi, everyone. Katie and Mom here...we just cruised through the guestbook - thanks for all the notes! They really make our day!

Katie wants me to go first...things are better, but only SLOWLY better. I had hoped that Katie would go to school today, but she had a bout of diarrhea in the middle of the night and she is still having a lot of abdominal pain. We have switched to a stronger medicine for the diarrhea, and she rested again today. Mike said she ate much, much more than yesterday and was drinking pretty well. Problem is, every time she eats it comes out the other end. "MOM, DON'T WRITE THAT, IT'S EMBARRASSING!!!"

Sorry, Kate. Anyway, she just ate dinner with us (Nanny, she ate shrimp! Hope that white count isn't low!) and as we are sitting here, I can hear her tummy gurgling, but she is also talking and laughing and that literally is music to my ears. We have high hopes for a good weekend. There is no school tomorrow, so we can take it easy one more day.

It's Katie's turn...here you go:

Hi.

Ha ha ha ha.

(She really doesn't get this whole update thing...back to the questions...)

MOM: Feeling better, kiddo?

KATE: Yes.

MOM: Want to go to the beach this weekend?

KATE: YES I DO.

MOM: What do you want to do when we are there?

KATE: Miniature golfing, shopping, swimming, play with friends

MOM: Does the shopping include you actually paying for something?

KATE: A little. NO, MOST OF IT!

MOM: Somehow, I don't believe you. You will get your Daddy to pay for everything, won't you?

KATE: Yes, I will.

MOM: Will it be nice to finally leave the house?

KATE: Yes, I want a turtle.

MOM: Katie, focus. We aren't discussing more pets right now.

KATE: Hmmm...we only have three (attitude dripping from voice...)

MOM: When is the last time you cleaned Ray's bowl?

KATE: Last week???? Ha ha ha.

MOM: Sorry, lovebug, it was longer than that.

KATE: What if I buy the pet with my own money?

MOM: Get a grip.

I'm going to stop here. Apparently, we need to have a little argument right now. And by the way, not one of you needs to offer us another pet. We have our hands full now!

Take care, everyone.

Love, Michele AND KATIE

Tuesday, March 13, 2007 7:37 PM CDT

After our quiet weekend, things did not improve much. Katie spent Monday sleeping and in pain, and having more diarrhea. I finally resorted to Immodium and she had a better night. This morning, though, her abdominal pain was still bad, and this made day 4 of no food or drink. I just knew she was dehydrated, so we made the trek to Columbia.

Katie's blood counts were perfect - beautiful, in fact, and you can't even tell she is on chemo. Her white count was a tad low, so I don't think this is a virus. I really think this was the usual reaction to her chemo. All the blood work and urine tests showed she was seriously dehydrated, so Katie got a whole liter of fluids and it really perked her up. The stick for the IV went beautifully, and she barely cried. She was begging for tacos, and I kept telling her no way - four days of no food and she wants to go to Casa Linda (her favorite Mexican place in Columbia)? Forget it! Well, she thought she had me - she begged her doctor. Dr. Kevin, who will normally side with her (and who has even written ME prescriptions like, "Mom must take Katie to horse back riding lessons..." when I wouldn't allow it with her kidney issues) told her there was no way, and he wanted her on a bland diet.

We went to a Cracker Barrel (and I was very careful in the parking lot), and she actually ate a piece of French toast, and a piece of regular toast. God bless carbohydrates. Well, she had an immediate bout of diarrhea, but I had immodium with me, she made it home and she had it again. Right now she is resting, she didn't want any more food, but she is drinking some water. I doubt she'll go to school tomorrow, but if she keeps improving, Thursday is looking better.

We have some really fun plans this weekend, but like before, I'm not talking about it on this update so I don't jinx it. We all need a break. On the way home, I realized that I had been clenching my teeth - when I finally relaxed, my teeth were actually chattering I had been clenching them for so long and so hard.

We usually present a happy face on this update, but sometimes things get hard. What helps so much are the people around us - checking this website, praying for us, covering my hearings when I have to leave suddenly, fielding phone calls at the office, granting me continuances of my hearings (and agreeing to them) without blinking, picking up Erika from school - without the support we get each and every day, I don't know where we would be.

Take care, everyone.

Love, Michele

Sunday, March 11, 2007 12:09 AM CDT

It's been a very, very quiet weekend. Friday night, we went out for dinner and did some shopping and had a great time. When we got home, Katie took her last dose of irinotecan (for this round), then she took her nasty antibiotic. She threw up (believe it or not, for the first time in 7 years), and vowed never to take that stuff again. It was terrible. She didn't throw up her chemo, so were happy about that.

Katie's tummy has not been cooperating, and now she is complaining constantly. It is her lower abdomen across the middle, and she is not eating or drinking well at all. She hasn't had any fever, though. We've had to switch to phenergen for the nausea, and of course, that makes her sleep. She barely got out of bed yesterday (Saturday), and today, she was up to eat breakfast (which she didn't eat), and then took a shower. Erika walked into the bathroom when she was done, and said, "Katie, why are you on the floor?" Well, I freaked out - I thought she had fallen or passed out. When I got in there, Katie looked at me, and told me she was just too tired to walk into her room to get dressed and just wanted to lay on the floor of the bathroom. I managed to get her up and back into her pajamas, and she is still in bed now.

We don't know what this is, but I'll call the doctor tomorrow morning. I figured she would have some abdominal pain if she was going to have that severe diarrhea with the chemo, but this seems a little different. Anyway, we are going to finish up our errands and see if we can get Katie to eat something....take care, everyone.

Love, Michele

Wednesday, March 7, 2007 7:47 PM CST

The dynamic duo is back again! Katie and Michele here....

First, the answers to our questions....How do you make an egg roll? Push it, of course (great job, Phyllis!) Why did the pig go into the kitchen? He felt like bakin'...What did the math book say to the pencil? I have a lot of problems.

Now, for Jim's questions: (1) the wife took her husband's picture, she's a photographer; and (2) charcoal. See, law school pays off! Actually, that's a lie...Mike figured out the first one (his boss had actually used that one in a meeting), and Katie figured out the second one. I can't remember my own name at this point after the day I have had.

Katie's been in school, and tonight, she went to church. Her stomach is not cooperating. :( She hasn't thrown up, but she has been using anti-nausea meds, and her tummy hurts when she eats. But other than that, things are good.

THIS IS KATIE: Hi. Amy, quit using my stuff. I told you I put that stuff in your bag, and you said it was ok, so quit acting like you had a problem with that. :)

I want to go to camp! And go swimming, if possible! And do arts and crafts! :)

I am good, other than my tummy hurting. I don't like my medicine (antibiotic especially) - it is nasty.

This is my favorite riddle of all, and I'll put the answer right after the question: What is greater than God, eviler than the devil, and if you eat it, you will die?



NOTHING. Ha Ha Ha!

THIS IS MICHELE: Take care everyone. Thanks for all of your thoughts and prayers.

Love, Michele AND KATIE!!

Monday, March 5, 2007 7:23 PM CST

Hi, everybody...tonight, it's Katie and Michele again. We just read through the past few days of guestbook entries, and we are still laughing.

THIS IS MICHELE: The last fever Katie had was late Thursday night. Friday evening, her pain had lessened and she had no fever, and we had some fun with friends. Saturday and Sunday were just as good - relatively pain free, no fever, and finally, we had Katie with her laugh back. She even went swimming on Saturday, and we had a wonderful visit with Katie's Godmother, Debbie, and her mother, Grandma Betty on Sunday. Katie had a doctor's appointment today in Columbia. We don't have blood counts back, but her doctor was very impressed, given how she was last Tuesday (in agonizing pain with high fevers). She started week 2 of her oral irinotecan, and even though it is really nasty tasting (Katie asked me to write that), it is going fine. Only one negative thing today - Katie lost another 2 pounds. We can attribute that to more than a week in bed, mostly asleep, and no appetite. She really does look good, though.

I don't know what we can attribute this turnaround to - maybe the new chemo regimen finally kicked in and started reducing tumors, or maybe all of our prayers started to work. Who knows, but we'll take it...it's wonderful to have our girl back and happy. Although, today, she was a major grump with me because I couldn't go shopping after our clinic visit as Katie's homebound teacher was coming to the house at 5:30 p.m. That time with her teacher was good, and hopefully we'll get her caught up in time for report cards. Even if she doesn't, we'll still get by.

Now KATIE wants to say something: Thanks for all the messages on my guestbook. They are funny. I third that motion to rename Shantel "CRACKLIN." Cracklin it is! I can't wait to see the dogs, John David! Amy, I miss you. Lakin, too....I really want to hear stories about my mom!

These are my favorite three jokes: (1) How do you make an egg roll? (2) Why did the pig go into the kitchen? (3) What did the math book say to the pencil? Put your answers in the guestbook, and I will update in the next few days and tell you if you were right.

Good night, everyone! (OOOHH - copy me again, Mommy...ha ha ha...hmmm...you are silly. Stop that. Mom, STOP! Daddy's a baby, Mom. Hey! Hmmmm..hmmm..hmm..hmmm.)

Love, KATIE AND MICHELE

Friday, March 2, 2007 5:50 AM CST

Hi, everyone.

Not much change here. Katie still hasn't made it to school. Her fevers keep spiking between 13 and 16 hours apart. Last night her temp was 101.2 degrees at 6:30 p.m. We always know she is going to spike a temp because she will get her robe on and climb under the covers claiming she is freezing.

Her pain is improving a little bit. I don't know if it is from sheer will to feel better, or the medicine. She hates the muscle relaxers because they put her to sleep for hours. The chemo is still going well - she is amazing. I just don't know if it is working. Katie doesn't have to take the chemo over the weekend, so we are all looking forward to that.

There is another Michael in the world - Mike's sister Cathy had a baby boy yesterday, and named him Michael. I think he is a little over 7 pounds and about 21 inches. I say "think" because of course, Mike talked to his sister, and he didn't write anything down, and he didn't even ask about a middle name. Oh, well! We finally have a boy cousin on that side! Congrats, Cathy and Eric - we are glad everyone is healthy, and can't wait to meet little Michael.

And by the way, should my college friends spill their guts to Katie, I need to remind them that each and every story about me includes one or more of them in some way (mostly not flattering!) Behave, all of you!

Love, Michele

Tuesday, February 27, 2007 7:40 PM CST

Katie picked her new background, and picture for the front page. She wants me to let her do the update tonight. She wants me to tell you that she does not want to get married, and doesn't like boys.

OK. Already this isn't going well. So, we are going to do questions and answers. I'll ask the questions, Katie will answer.

Q. Katie, how was your day?

A. It was fine, but my neck is killing me.

Q. Did you go to school today?

A. No, I didn't. I had to go to the hospital.

Q. What happened there?

A. I had to have a CAT scan of my neck and the back of my head.

Q. What did the scan show?

A. Nothing, I just have a sore neck.

Q. Did you have any fun at all today?

A. No. Wait, yes, yes! Go back, go back! I went to my favorite place in Sumter and got my favorite salad.

Q. Ready for bed?

A. I don't want to go to bed.

Q. Why?

A. I didn't watch TV today.

Q. Are you in pain now?

A. Yes.

MICHELE AGAIN: Boy, is she boring. She just read that and insisted that she isn't boring. By the way, we just read over the guestbook. I am starting to believe that we are being upstaged by everyone signing the guestbook. Please scroll down to read Amy's posts and look at her pictures. They are great!

The reason Katie had a scan today was because at 3:30 a.m., she got us up crying and in agonizing pain with her neck - it was scary. After talking with her doctor, we got some pain meds on board, and I just was scared to death thinking about what could be in her neck. So, she took a trip to the hospital with her Daddy, and they did the scan. Nothing on there at all, thank goodness.

(Katie just said, "Are you done yet?...Why do you always have to write what I say, Mom...You are mean, Mom...quit typing everything I say...I mean it! Stop!") Now she is criticizing my typing. Oh, and all of this while her head is tilted about 30 degrees to the right. It's driving me crazy!

THIS IS KATIE: Mom can't even spell my name or the word stop. HA HA HA HA HA HA HA !

THIS IS MICHELE: Good night, everyone. GOOD NIGHT KATIE. We are all a little loopy...from pain meds, lack of sleep, and crazy clients.

Good night, everyone.

Michele and KATIE

Monday, February 26, 2007 8:05 PM CST

KATIE KRIZE IS A ROCK STAR.

Tonight, Katie started on her new chemo regimen. She has had a sharp increase in meds, given what she used to be on. She had to take an anti-nausea pill, two different antibiotics (one pill, one liquid), 6 chemo pills, a vitamin, and her other liquid chemo. The liquid chemo, to me, smelled like a mix of oil and gas - it was horrifying. She mixed it in some crangrape juice (Aimee - I have yet to find capsules, and she takes about 3 ml of the stuff, anyway - probably too many capsules!) She swallowed it down, cringing, but I have seen worse faces out of her when I make her try...well, like spinach, or broccoli, or CARROTS. I swear, she would probably claim to want to swallow oral irinotecan before any carrot would pass her lips.

After she was done, I told her she was a rock star. I just couldn't believe she handled all that like it was nothing. Shortly after dinner, I was reading some e-mails and she and Mike were just cracking each other up about our dogs. Her laughter just rang through the house. Where does she get this strength? Her temp hit 103 degrees this afternoon, and now she is holding her head funny because her neck hurts. So, school tomorrow is iffy again. But she laughed today - a lot.

Thanks for all the messages on her guestbook - Katie reads them in chunks, but I read them every day. Don't know what we would do without your thoughts and prayers, and everything else.

Love, Michele

Sunday, February 25, 2007 4:46 PM CST

Katie has had a few very quiet couple of days. On Thursday and Friday, she stayed home from school because she was in a lot of pain with the incision in her armpit. She stayed with Nanny and Aunt Sandy, and they took wonderful care of her. She didn't complain much, took some pain meds, and rested a lot. We all went out for dinner Friday night, and then did a little shopping - the girls got spoiled by their grandmother and great aunt and got some great outfits. Thanks! Nanny and Aunt Sandy left on Saturday, and made it home safely.

On Saturday, we piddled around the house while I cleaned a little bit and put away the laundry...we were all going stir crazy, so Saturday afternoon, the girls and I decided to go shopping. We each got to pick a store - Erika wanted Payless for shoes, Katie wanted Gamestop, and I wanted to go to a little gift shop I love. After the girls' stops, we headed to Walgreen's to pick up Katie's chemo for Monday. We were at the drive thru window for about 15 minutes - first, the tech couldn't find the prescription (I dropped it off on Thursday), then we get the wonderful news that they don't exactly have the right pills. I was HIGHLY annoyed, and let them know it - they claimed they might not have it, and didn't know when it would come in (this is three days AFTER I dropped it off). My fit must have worked, because a few minutes later I was told it would be in on Monday - exactly when she is supposed to start.

While we were sitting there, Katie looked like she was about to fall asleep. I reached over to her to rub her head a little and she cried out in pain - she seems to have another sore spot on her skull. And - she was warm, too warm. I always carry a thermometer in the car with me, and sure enough, she was starting a fever. It wasn't high enough to call a doctor, but it was high enough to end our shopping trip. Erika and I ran to get some groceries without her and came home. By the time we got home, her temp was 102.6.

Luckily, we didn't have to go to the hospital. Since Katie has no line, and no other symptoms other than fatigue, our wonderful doctor let us play the wait and see. She hasn't stopped running fever yet. Just a few minutes ago (it is Sunday afternoon), it was 102.7 degrees. Ouch. She is exhausted. We don't know what this is, and she will probably see the doctor tomorrow. Katie did play outside this morning before the thunderstorms came, but she put herself to bed for a nap this afternoon. It was all eerily like when she was first diagnosed with cancer.

I've been trying to keep busy and work a little bit this weekend. Mike is coping his usual way - and those of you that know us know that all he has been doing lately is sleeping.

Thanks for checking in on us, and keeping us in your prayers. Tomorrow Katie starts her new treatment regimen and we are all hoping for the best. We found out recently that another older child with neuroblastoma was on this treatment, and he has done extremely well. There are other success stories, also. Then there are some of our other little friends who are progressing like Katie and have very little options, or who are going through some very rough times. We thank God for each day.

Love, Michele

Wednesday, February 21, 2007 8:18 PM CST

We are home, and did not have to stay overnight in the hospital. We have figured out how to do this: pack an overnight bag for each of us, and we won't have to stay in the hospital. Had we gone with nothing, Katie would been inpatient for sure.

Katie's surgery wasn't scheduled until 1:30 p.m. - she was actually pretty good though. She complained about being hungry, but she wasn't too grumpy. Her IV stick went fine - Chuck from outpatient surgery is just one of the best sticks there, and he is very good with her. We had fun with Marolyn, the child life therapist, and Katie even held a baby who was headed into surgery.

The surgery itself didn't take long at all, and her surgeon came out to meet with us to share the really bad news. As soon as he saw the lymph node, he was sure it was neuroblastoma. They looked at some cells from the node while still in the OR, and confirmed that the cells were small, blue and round - typical NB cells. He didn't see any other lymph nodes and the other things that might have been neuroblastoma he left alone because he didn't want to go digging around in her armpit with all the blood vessels.

After our talk with her surgeon, they asked me to come back to be with her in the recovery unit. I opened the doors, and I heard her screaming at the top of her lungs - uh oh. She's usually a little emotional coming out of surgery, but not like this....she was screaming at the top of her lungs, crying, and kicking her feet - like a three year old having a temper tantrum. She kept saying over and over that they wouldn't let her count (she gets to count backwards once they administer the sedative, and her lowest number has been 87). Well, she couldn't remember that she counted, even though one of the people from the OR assured her repeatedly that she counted all the way back to 50 and they had to give her more than the usual sedative because she fought it so well. The sedative is also an amnesiac so she couldn't remember.

Well, this tantrum wasn't her fault - she just had a severe reaction to fetanyl - a pain medicine they administered to her after surgery. Needless to say, we won't be using that again. Ten minutes of tantrum later (and about 20 other traumatized patients in the recovery unit), and she was fine.

We left the hospital later, no problems, and did some major bribe gift shopping, even though as she was walking around Best Buy, she was dizzy. She scarfed down a quarter pounder and fries at McDonald's first, though. We got home, and she hit her bed pretty hard. She is snoozing, and I just gave her a pain pill, but she just wants to be left alone.

Yesterday, I talked with three doctors - one from NIH, one from here, and one from Philadelphia. We have a plan. Katie will do two oral chemos. I am very, very concerned about the skull lesion turning into a tumor that would encroach on her brain. One of these chemos is one of the few that actually penetrates the brain. For my NB family, Katie will start on oral irinotecan and temador. She will most likely lose her hair again, and her blood counts will be affected. We couldn't get into the CEP-701 trial in Atlanta for now, but we may do that in the future.

Two oral chemos means that we are going to avoid a central line for the time being, and Katie is going to put up being stuck with a needle. I want her to swim and have fun for a little while longer. We have told her that her cancer is back, and that we have to switch gears, and her response has been that she is sad we aren't going back to NIH now, but fine with whatever we decide for her.

This update is long enough...Amy shared some stories from Disney that I thought you would all appreciate, and I wanted to end this update on a happy note. Here you go:

Amy wrote: "In case Katie isn’t sharing much about the trip I thought of some things to tell you as I was looking through the photos.

We had a really nice dinner at Epcot on Saturday night – it was a dinner on your own night and we went to a Japanese restaurant where they cook right on the table. Katie had lobster and shrimp. There is a picture of her eating there. Some of the girls tried sushi and seaweed – Katie did not!

Katie got really scared in a couple of the rides/shows where it got really dark. She clung to me for dear life. I bet if you ask her about it, she won’t admit to it.

Katie enjoyed spending tons of quarters to splash people at this one ride at SeaWorld. There is a part where they come around by a bridge and you can put a quarter in this machine and if you hit the button at just the right time you can get people wet. Katie loved splashing unsuspecting strangers with ice cold water and laughed her devilish little laugh!

You can see the one picture where she is in a black sports car. That was after we tested cars as crash test dummies.

Katie was OCD about turning lights off in the hotel room when we left and instructed Cally to go back in and turn the light off in the bathroom. I asked her if that was a rule at home and she said yes. I thought my parents were the only people that insisted on only have lights on in a room you are using! I can’t believe I am just now picking up on this! I remember noticing at camp that I wasn’t only person making sure the light was turned off when we left our cabin and now I know it was Katie. Most people just leave lights on all over the house and especially at hotels. Aren’t you happy to know that she is practicing what you teach her at home even when you are not around?!"

NEW PICTURES!

Love, Michele

Monday, February 19, 2007 6:46 PM CST

Katie is home, safe and sound. The trip back was fine, although I managed to have an uh-oh. Erika and I got to Charleston early, so we stopped at a Cracker Barrell to shop a little bit and waste some time. As I was pulling into a parking space, I hit a big Chevy Tahoe that was parked there, smashed my light good, and barely made a mark on the Tahoe. Big sigh.

Princess came home with an attitude, but I kind of expected that! She is exhausted, and looks it, but she had a blast. She rode lots of big roller coasters (a first for her), ate a lot, and she seems to have lost her voice. Amy, her counselor, is sending pictures, so I'll post those as soon as I can. Amy told me that Katie didn't complain of pain once (no pain meds at all), had more energy than she did, and was absolutely in the moment the whole time. Katie is parked in front of the TV right now, watching everything she taped on the DVR while she was gone.

Since we found out that Katie has probably progressed, I feel like I've been handling things ok. Seeing her again today, after that five day break was a little emotional. Not at first - but while we were riding home, Katie put in a CD of Christian music that she loves, and promptly fell asleep. I looked over at her, sound asleep, and thought about what we have to decide in the next week. The treatment options range from relatively easy (like ABT-751) to really harsh. And the return on either is a toss up. I still can't get over that Mike and I are the ones deciding what she has to go through. I am so scared to make the wrong decision.

Katie's surgery is on Wednesday. Mom and Aunt Sandy are coming up tomorrow to be with Erika. We'll update once we know something. Take care everyone.

Love, Michele

Thursday, February 15, 2007 10:23 PM CST

I don't even know if Katie has gotten to her hotel yet. The bus they took to Disney, which left Charleston at 7:30 a.m., broke down twice, and they were delayed at least five hours. Then, the counselor Katie adores and who was flying down to meet them ran into major flight delays...still, Katie called me tonight, and was absolutely giddy with delight. She told me they were on the way to Miami to eat at WonderWorks. We kept insisting that she was in Orlando, but she SWORE they were going to Miami.

I just looked it up on the internet - it's the upside down place on International Drive in Orlando. Ok, the child will probably fail geography. She is happy, swears she isn't in a lot of pain, and is away from cancer for awhile. Erika's having a little bit of jealousy, and it must really be hard for her. We'll try to squeeze in some fun just for her this weekend.

John David, who on earth let you qualify to carry a concealed weapon (see the guestbook?) Now, did you really think I would let that go? I'm calling security at the courthouse tomorrow and you will be frisked every time you go in! Wait a minute! You might actually like that!

Have a good weekend, everyone.

Love, Michele

Tuesday, February 13, 2007 7:33 PM CST

We had a long day today, but it started pretty well. Katie was dreading the IV, but we had a new tech in nuclear medicine start it (Denise), and she got it on the first try, without any fuss. Katie didn't even whimper. The people in nuclear medicine are always so good to us, and it continues!

After the scan injection, we ate breakfast and headed over to the surgeon's office. Katie will have the major lymph node removed next Wednesday, the 21st, and it will be examined for neuroblastoma. It is still painful, but she seems to be feeling a little better. Maybe she's just used to the pain. After that, we headed to CAT scan, for a CT of her head. There, after waiting more than an hour, she finally had the scan. There was absolutely no fuss about hand injecting the contrast, so I didn't have to get nasty...what a relief.

Then onto nuclear medicine again for the actual bone scan. I had told our other tech about what was going on, but I didn't mention the pain in Katie's head. During the scan, our tech said, "So, are they worried about her head?" I wanted to throw up. Sure enough, there is a spot lighting up on bone scan on the top of her skull. After bone scan, we visited the clinic for a little while (Katie got to do a project with her art therapist, the wonderful Lyssa), and then we headed to lunch. Mike has gotten our bug, and he was miserable all day, so we headed home.

When we got home, our doctor called - sure enough, there is a new spot lighting up on bone scan on Katie's skull, but curiously, the CAT scan of her head was normal. Typical Katie insanity - if the lesion is cancerous, it probably should have been lighting up on CAT scan, but then again, if it was too small...so, she HAS to have the lymph node biopsied so that we can figure out if she has progressed.

Katie continues to feel great - she can handle the pain, and she is her usual energetic self. Tomorrow night, I'll drive her to Charleston to spend the night with one of her Camp Happy Days counselors who will then deliver her to the bus for the trip to Disney on Thursday (saving us from getting up at 4:00 a.m. on Thursday!)

We still don't have a treatment plan, but we are looking into our options. It is heartbreaking to us, and to Katie, but she has this trip to look forward to, and maybe we can take a breath and make some decisions. Some months ago I watched another NB child told that she was progressing and it turned out to not be true. I am still hoping for that and hoping we can continue the ABT. It has been such an easy drug to deal with. Then again, I know this disease. It has no rhyme or reason, no pattern, no consideration - it's just completely, totally nasty. A week ago, things were wonderful. Six days ago, a new tumor probably started growing. It just plain stinks.

I've put a new picture on this cover page and a new background, in honor of Katie's fun at Disney. This disease may take a lot from us, but we sock it back to it by living our lives to the fullest. Take that, NB. You can't steal all of our joy!

Love, Michele

Saturday, February 10, 2007 2:11 PM CST

I've been avoiding writing an update, because I'm just afraid to let this new information in...

Thursday night, Katie started running a fever. I stayed home with BOTH girls all day Thursday because Katie's arm still hurt, and Erika was running a raging fever in the morning, and she was coughing. Katie started a fever in the evening, and started complaining that her left shoulder hurt, and a spot on her head hurt - not a headache, but when you touch a certain spot on her head, it hurt.

We called our oncologist, who didn't feel it was an emergency situation (and who absolutely LOVED that Erika was sick!) so she asked us to come in on Friday. Mike ended up taking Katie, so I could take Erika - she was still having huge fevers and coughing. I woke up Friday feeling ill too. As for Erika and me, our family doctor gave Erika Zithromax for her infection then heard me slightly coughing and gave me an exam and put me on the same medicine.

As for Katie, the oncologist felt a CAT scan of that armpit area was necessary Friday. After seven sticks with needles, they finally started an IV. Katie and Mike were both traumatized. Then, at CAT scan, they insisted on removing the IV, and replacing it with a bigger needle, but Big Daddy stepped up to the plate and told them no way, no how were they going to remove that IV and they would just have to make do. I'm telling you - we may end up being told to go elsewhere for our scans, because those people hate us. I could care less. Katie was so proud of her Daddy - she gave him a great compliment - "You got as nasty as Mommy does!"

Our doctor read the scan immediately and they called me at work. The news is not good - the lymph node that is swollen is about 3 cm, and it has no characteristics of infection, but it has every characteristic of more disease. And, there are four more lymph nodes hiding behind the big one that are also filled with what looks like disease.

The only thing on Katie's mind is the Disney trip. Good thing every doctor, nurse, parent, supporter agrees with Katie. Going on the Disney trip is going to do no harm, and in fact, might do a world of good for her. The words "quality of life" were again mentioned, and I wanted to throw up. So, on Tuesday, Katie will have a bone scan and a CAT scan of her head (to follow up on that other pain), then the next Tuesdsay (the 20th), when she is back from Disney, our surgeon will biopsy those lymph nodes.

Yes, there is a chance this could be nothing. However, my spidey mom sense says no - this is progression. Katie will not start ABT on Thursday. The NIH has been great - they are going to meet as soon as possible to discuss Katie's treatment and see if there are any more trials there at NIH for Katie to enroll in. We are very comfortable up there, and we are hoping to keep her treatment either at Richland in Columbia or at NIH. However, we will go elsewhere if necessary. There are still a lot of options out there, but they are all a little more intense (ok, a lot more intense) than the ABT-751.

Katie knows what is going on, but isn't focusing on it. She is outside right now playing with the neighborhood kids, rolling on her Heelys and having a great time. She was upset yesterday, but more about the needle sticks than anything. Thank God for Katie - I don't know what I would do if she were a mess.

Take care everyone.

Love, Michele

Wednesday, February 7, 2007 10:15 PM CST

We were having more smooth sailing until today - but there was some good news. This morning, the nurse from Katie's school called to tell me that Katie was complaining that her armpit hurt - her right arm, in that area. However, she said it wasn't too bad, and she had no fever. A few hours later, the nurse called back and said the pain was worse, that she had a headache and that she was running a low grade fever. So, I spent the afternoon with Katie while she vegged out on the couch. There is a noticeable, large, soft lump in Katie's right armpit. And, she was complaining that her left shoulder hurt.

I called the doctor's office, and since she has an appointment on Monday, they didn't want to see her unless she got worse. Then, I found out that the bone marrow results were back from California and they are clean! That was wonderful news.

Maybe the armpit pain is a swollen lymph node. Stomach flu is going around Mike's work, and I've heard of other viruses in Katie's school. Who knows. Mike and I both tensed up feeling the lump - even Katie asked if it was more cancer. Big sigh.

So, I'm hoping everything is fine. I'll try to update if anything changes.

Love, Michele

Sunday, February 4, 2007 5:38 PM CST

Hi, everyone.

Katie had a wonderful weekend in Charleston, although she text messaged me the whole time! Erika missed her SO MUCH, but she got to go to a birthday party and out to dinner with Mike and me, so it wasn't totally horrible to be without her. Katie goes to Disney not this weekend, but next weekend, and she'll be gone for five nights, and six days. That's going to be the tough one!

On Thursday, Katie's doctors appointment went really well. I was talking with her doctor when she got stuck - she didn't cry, or even make a whimper. By the time I turned around, she was done. She is doing great with needle sticks, it's just the IV's that hurt. I haven't gotten her blood counts - YET - unbelievable - but she did gain almost 2 pounds! Woohoo!

I have been savoring these good times with everyone healthy. Unfortunately, there are daily reminders of the ravages of cancer. Our wonderful little friend, JJ, died on Wednesday evening. We met JJ and his family at NIH. JJ's parents, Jim and Diana, are just two of the coolest people I have ever met. Katie adored Nikki, their daughter, and just a few weeks ago, JJ became a big brother to baby Matthew. JJ was six years old, and a warrior. I can still smile thinking about him doing his homework at the table at the Children's Inn, finishing and then rushing off to play...Please keep JJ's family in your prayers.

I can't believe it really is February 2007. A year ago, on February 22nd, is the day Katie came home and told me her arm hurt. A year with Katie's type of relapse is a miracle, and we are grateful for each day.

Take care everyone!

Michele

Monday, January 29, 2007 10:30 PM CST

Not much to report - Katie started her sixth round of ABT-751, and she continues to feel pretty good. She's really trying to eat, but I think she just doesn't want to eat a lot. I've tried all of your suggestions, but she hasn't added anything new to her regular diet. So, tonight, while we were telling Erika she was done with snacks, we were making Katie eat a cinnamon bun!

This weekend she heads to Charleston with the teen group, and she is very excited. Erika is doing really well, also. Katie has blood work and a physical on Thursday, and she told me big deal, as long as its not an IV, she's fine with a needle stick. She really has come a long way.

There are new pictures! Check them out. She is really going to kill me when she sees the last one on page 2. That's what you get, Katie, for reminding me daily that you will be 13 in less than four short months! Love ya, sweetpea! Ha ha!

Michele

Tuesday, January 23, 2007 5:34 PM CST

Hi, everyone.

It would figure that Friday, after I updated Katie's website in the morning, things would crash...but just a little bit. I was on my way to court on Friday morning when Katie's nurse called. Katie had twisted her ankle at PE, and she was in a lot of pain and it was swollen. Myrtle picked her up and took her home and then after court I came home to be with her. We called the clinic right away and given that it was her left ankle (and there are still tumors in that leg), she went for an x-ray at McLeod. I am assuming that it was negative, EVEN THOUGH TO THIS DAY NO ONE HAS TOLD US THIS. We are getting a little frustrated with our care here in South Carolina. Anyway, she began to put weight on her leg in the afternoon and with a little ibuprofin and ice, by Saturday she was shopping with me. Whew.

Katie also developed a cold over the weekend, but it was just a little stuffy nose and some mild coughing. Monday's bone marrow aspirate and biospy went fine. Katie had to be stuck three times for her IV (poor Robin, our nurse - her eardrums will never be the same!) but the procedure itself went well. Katie was so funny - it was scheduled for 11:00 a.m. and it is done under general anesthesia, so she had nothing to eat or drink in the morning. She was stomping around the clinic saying, "I'm starving!" Other kids were having procedures too, and they heard Katie and started complaining. It was pretty funny. We left in the afternoon and Katie headed to her favorite Mexican restaurant to scarf down two tacos.

By the late afternoon, she was in a lot of pain, so we started her on some pain meds. One thing that has unnerved us a little is that Katie has lost even more weight. She is eating, though, and looks great...but everyone is now concerned and we have to get some more calories in her. She is taking full advantage - we are about to sit down to dinner, and she is eating a strawberry Pop Tart. I would never allow that if we weren't so concerned about calories.

We got some results today - Katie's blood work is all good (her hemoglobin is fantastic - something that Katie always has a problem with), and her bone marrow came back clean. She has always tested clean here at our hospital. They also send a sample to the Children's Hospital of Los Angeles to examine it at the molecular level. We won't have those results for a few weeks.

Given these great results, Katie can start round 6 of ABT-751 on Thursday. She also got good news at the clinic - she has been allowed to join the teen support group at the cancer clinic, even though she won't be 13 until May. They are going on a trip next weekend (to Charleston) and she is psyched. Two weeks later she goes to Disney with the Happy Days group for five days. She stayed home from school today because she woke up in pain, but she wants to go to school tomorrow.

Take care, everyone - we are hoping for more smooth sailing!

Love, Michele

Friday, January 19, 2007 6:59 AM CST

We've had another week of good health! Katie continues to feel great and look great. She had a doctor's appointment on Tuesday with her oncologist in Columbia. They did blood work and a full physical and neurological exam (the ABT-751 can have some neurological side effects). Everything was normal. Her blood counts were great, and explain why she has more energy than all of us (well, except for Erika!)

So, she has gone to school two weeks in a row! Unfortunately, we can't continue that streak, because on Monday, Katie will have a bone marrow biospy and aspirate. Dr. Laura is going to do the procedure (it involves drilling into Katie's hip bones to remove marrow and bone). Dr. Laura has done two of Katie's bone marrows - the second one went fine, but the first one she had to call in back-up. Katie's bones have always been very strong, so getting enough of a sample is tough sometimes. All the doctors say that Katie makes them work to get that sample. This also leads to more pain for her, though. We are hoping she'll only miss one day of school, but she will be in a lot of pain the next day, too, so, we'll see. Katie hasn't had a bone marrow test since October (it was clean then), so we are hoping for good news. She starts her sixth round of ABT-751 next week.

Have a good weekend, everyone!

Love, Michele

Thursday, January 11, 2007 5:04 PM CST

Katie continues to feel wonderful, and she has gone to school every day this week - quite an accomplishment. Her hair looks gorgeous, and she has been so happy. She finished round 5 of ABT-751 last night, and it hardly phased her. She goes to the doctor for a physical and blood work on Tuesday the 16th, then she will have a bone marrow aspirate and biopsy on January 22nd.

Mike and I are trying to get back into the swing of things - you know, work, homework, church, trying to have a normal life. It's been a long week for both of us at work, and while things are great with Katie's health at the moment, it is hard for us to embrace it. We know so many other children in tough times right now - kids like Katie who have progressed, and our little friend JJ who is a big brother again, but who just had a door of treatment closed because of cancer progression. Mike and I feel like we are waiting for the other shoe to drop, and it is hard to just lean back and enjoy these good days.

That being said, when someone asks us how we hold it together, it is simple - we just have to be with our girls. Katie, with her courage facing this cancer, her incredible attitude, her smile, her wit, (I could go on!) makes dealing with this so much easier. And Cely Anne commented the other day that given what Erika has endured the past nine months, she really has coped amazingly well. And she has - Erika was a challenge before cancer, and she could be a complete nightmare now, but she's not...she makes us laugh each and every day, and we are so proud of her, too.

I just keep reminding myself to just live day-to-day, that each day is a gift unto itself. And it is. So, here's to today!

Love, Michele

Sunday, January 7, 2007 10:34 AM CST

Whew! Where do I start? I can't believe the last update was December 24th. Time sure does fly.

Things are GOOD. We've had a whirlwind of a winter break, but the end result is that Katie's cancer is stable, and she feels great. We had a quiet, but wonderful, Christmas. Katie's scans after Christmas went off without a hitch - she is such a pro with a needle now. There's a little bit of drama, but compared to a month ago, she almost doesn't seem to mind it.

The girls got so much stuff from Santa, I don't know where to start. We really are blessed. We got to visit with family and friends in Pennsylvania, and it was fun, but way too short. Our trip to Washington was dramatic, and we got delayed for a few days, but it turned out fine. Because of President Ford's death and funeral (adding in an extra federal holiday), and our home hospital's...well, I'm going to be diplomatic here and say...mix-up...Katie's scans didn't arrive in Washington until the day after we were supposed to leave. The doctor in Washington asked us to stay another day - something the other three in my family were only too happy to do! We managed to hop on the metro two days in a row and take in some sights like the Ford Theater and the Air and Space Museum.

The good news with Katie is that because she is stable, they gave us four rounds of ABT-751 to take at home, restaging scans won't be until the end of March, and her schedule of visits with the doctors here in SC is much reduced. She does have to have a bone marrow aspirate and biopsy this month, but other than that it is two sets of bloodwork and two physical exams. Compared to the last few months, that's a breeze!

Along with all of this wonderful news, my wonderful Aunt Maureen passed away on December 30th. She was surrounded by her family and her sisters. Aunt Reen survived breast cancer for eight years. She was diagnosed a year before Katie, and she was in remission for five years. She relapsed three years ago and faced her battle with a fierceness that we admired so much. She was also Katie's biggest fan, I think. When Katie relapsed, Aunt Reen told me that she had offered her life for Katie's so that Katie could enjoy 60 years on earth just like she did. Her faith in God was unrivaled. I remember when I was a little girl how she used to roll my hair in rollers...how she and her sisters (my mother, Donna and my aunt, Sandy) used to tell the most hilarious stories of their growing up and torturing each other...how she stayed in the town where they grew up and I was born, and how she welcomed me with open arms no matter what. Aunt Reen was the most energetic person I ever met. This past winter, she spent a few months with my mom and aunt in Florida. They all stayed at our house for a day or two before heading out. Aunt Reen was doing my laundry, cleaning up, and fussing over us, while my mom and other aunt and I played cards..kind of embarrassing. She was always the one taking care of everyone else, practically till the end of her life. I know she is with God now, and at peace, and not in pain. She adored her husband, her children, and grandchildren - and her nieces, nephews, and siblings. We are all going to miss her so much.

There are new pictures on this site...enjoy. We are hoping 2007 brings some much needed normalcy and peace. Take care everyone.

Love, Michele

Sunday, December 24, 2006 9:57 AM CST

Merry Christmas Eve, everyone!

Since I posted last, things at our house have been very good. Katie hasn't had much pain, and we have been shopping, playing and eating. It has been wonderful. We all seem like we are catching our breath, and just enjoying each other.

Katie finished out school, and she struggled through her exams. Believe it or not, she has passing grades in everything, and has been allowed to repeat her exam in math next week. She will start January with a clean slate. Her grades aren't what we usually expect from her, but they are perfectly acceptable. From what she has been through since this second 9 weeks began, they are phenomenal. We all want that clean slate in January to start over. Mike and I are so proud of her.

Yesterday, we went to St. Anthony's to see Santa and go to his workshop, then after delivering some presents to Erika's boyfriend and his wife (long story :) ), we went swimming again at the Y. Since it was almost 80 degrees, it really didn't feel like Christmas, but we sure had a lot of fun!

Erika is grumping right now because we won't let her open presents. They get to open one on Christmas Eve, then Santa comes, and there are even more tomorrow.

I hope everyone has a wonderful Christmas. We are savoring the days with no pain. Katie is a little worried about the needle stick after Christmas (every day after Christmas she has a scan or some other test), but we have been reminding her to live in the moment.

Take care everyone!

NEW PICTURES ON THE NEXT PAGE!

Love, Michele

Sunday, December 17, 2006 9:18 PM CST

Hi, everyone. Things are still a bit of a roller coaster here, but we have squeezed in some fun. On Thursday, Katie woke up with terrible diarrhea, so she had to stay home from school yet again. It actually resolved by noon, and she felt much better, so we decided to keep her appointment at the physical therapist. I'm so glad we did - she did great at PT, and her range of motion without pain almost doubled after one session!

She was feeling so good, that she begged me to attend her Christmas concert that night at school. She has barely been in school, and unable to rehearse, but she just wanted to do something normal. It was awesome. Katie was just so happy to be there. I cried watching her do something so completely normal. Parents of children with serious illnesses don't cry over needle sticks, or surgery, or scans, or any of those other things - it's the day-to-day victories of normalcy that really get us.

Friday, Katie went to school like normal! We went out for dinner that evening, and Katie had PT again in the afternoon. Her leg is vastly improving. She really enjoys her sessions, too.

Saturday was a BIG day. Katie went swimming for the first time in 9 MONTHS! We had so much fun. The YMCA pool had just been refinished, and we were practically the only ones there. Then, in the afternoon, we headed to Columbia to have dinner at Williams-Brice stadium with the Gamecocks and Steve Spurrier. We had an absolute blast. One of the players got to sit with us and eat dinner, and he was really nice - go Andy Boyd! We can't wait to watch you in the bowl game! The girls had their shirts and footballs signed, and Mike and I got a huge kick out of it. We ran into some friends that we haven't seen in awhile, and found out that their oldest son (their youngest had leukemia when Katie was in treatment the first time), is going to play for Carolina next year! Very exciting.

Today was one of those run-errand days. We went to church, grocery shopping, did laundry, worked on homework and prepared for tests, and then we had a nice dinner together. That's when Katie announced that she can't swallow. I looked in her throat and there is a big sore on the back of her throat. At first I thought it might be strep, but she has no fever, and she feels great. I think this is a classic mouth sore that comes with chemo. She has been back on her ABT-751 since Wednesday. Luckily, Katie has a doctor's appointment tomorrow so we can have a doctor check out that sore.

More big news - I actually have posted new pictures on this site, and I didn't wait 9 months! These pictures were all taken in the last three days - chorus concert, swimming, and Gamecocks. Enjoy!

Love, Michele

Wednesday, December 13, 2006 8:23 PM CST

Yesterday, Katie had a rough transition back into school. She made it through 5 classes, but then had to come home. She was dizzy and nauseated, and her leg hurt. Last evening, though, she seemed ok.

This morning, she woke up and said her leg felt better than it had in awhile. This was going to be a long day - she had school, then dress rehearsal for her chorus Christmas concert after school until 6:00 p.m. Cely and I took Myrtle and Lisa out for dinner to celebrate Christmas, so Mike picked up the girls and took them out for dinner. Katie made it through a whole day! And tonight, she was dancing - her leg hurts a lot less!

The reason she was dancing is actually amazing. Seven years ago, Katie received a Song of Love. Songs of Love is an organization that creates songs for children who have serious illnesses. Well, the one seven years ago was much different than now, and so I wrote to them again, and they made a new song. Simply put, it is AWESOME. It has a catchy tune, and we all love it. In fact, I cry every time I hear it.

I have looked to see if I can add the song to this website, and I don't think I can (Aimee - help!). The new song, however, can be downloaded - by anyone - for a nominal fee. This service cost us NOTHING. To download the song, it will cost at a minimum $.99. You can donate any amount, but you have to give them a penny less than a dollar to download it. Well worth it, I think. Also, if you are one of those people we actually see - I will be glad to play it for you! Jenny Case wrote the song, and she did an amazing job.

Anyway, the link is below, and here are the instructions: Go to www.songsoflove.org and click on the Family and Friends Song Download link. Type the last name KRIZE in the "Child's Last Name" field and the number 10549 in the Child's Record Number field.

These are the words:


Katie, she's playing her guitar
Singing and dancing like a superstar
She loves her little sister Erika
Even though she drives her crazy
Don't call her a princess
'Cause her name is Katie!

She loves wearin' her Heelys
And social studies at school
Making necklaces and bracelts
Her favorite color is blue
WWE Wrestling and playing Diner Dash
Reading Lemony Snicket books
and doing arts and crafts.

Chorus:
She's everybody's hero
An inspiration to us all
Through the good times and the bad
She's always standing tall
Her heart is made of gold
And it's shining like the sun
Bringing happiness and joy to everyone.
Katie, Katie, what a young lady
So brave and strong, she's the star of this song
She brightens up our lives with that twinkle in her eye
Through thick and thin she comes out grinnin'
Reaching for her dreams, she's always winnin'
She knows she can fly, so she's takin' it to the skies
Give it up for Katie Krize.

Katie loves hanging out with her best friend
Lakin is her name, and their fun never ends
She has two dogs, Lucy and Charlotte
And an awesome Mom and Dad
They're both so proud of their girl
They are her biggest fans.

Shopping for purses is what she likes to do
And Katie is quite the talented painter too
Listening to music is always so much fun
Evanescence, Ciarra and Hannah Montana
Are all number one....

BACK TO CHORUS.

Cool, huh?

Michele

Monday, December 11, 2006 7:10 PM CST

Katie continues to be in pain, but she is moving around more - mostly out of necessity because she is just sick and tired of being cooped up. Yesterday, we went to see Kristy Yamaguchi - Friends and Family at the Colonial Center in Columbia. It was great. It will air on national television (NBC) on January 14th at 4:00 p.m. All of the skaters had their families with them, and the kids skated too. Our girls were very impressed. After that, we stopped at the McDougalls for a Christmas party, and the girls had a lot of fun playing with the kids that were there. It was nice for us, too! We got home at 9:30 p.m. exhausted but happy not to have done anything health related all day!

Today, Katie had a bone scan and a physical with her oncologist. The bone scan was fine - nuclear medicine is always fun to visit! Katie had to be stuck and had an IV, and she cried but it only took one stick, and she was done. Our oncologist did consult with the pediatric orthopedist and Katie's diagnosis is now Osgood Schlatter disorder - a pretty common disorder in growing adolescents. She is going to have some physical therapy, and her doctor wants her in school. She is still in a lot of pain, and I'm not sure I'm on board with this plan, but I am hoping and praying for the best. As soon as I can get the insurance coordinated (loads of fun with Tricare), she'll start the physical therapy.

Katie's doctor reminded me that Christmas is two weeks away - BIG SIGH. I can't believe it is right around the corner. We are now looking forward to our dinner with the Gamecocks on Saturday, and today we found out that a lot of our friends from the clinic are going to be there, too, so the girls will have lots of playmates (because they could care less about the Gamecocks). All the parents are psyched though!

Take care, everyone.

Love, Michele

Friday, December 8, 2006 3:40 PM CST

Since Katie's MRI was scheduled for 7:30 a.m., we got up at about 5:00 a.m. to get ready - it was a long day! The MRI was fine, but as always there was a mix up and it took twice as long as it should have. Katie had to have IV contrast, and one of the techs in MRI had to put the IV in. She did a pretty good job, given Katie's rolling, tiny veins. She only stuck Katie twice, and Katie handled it pretty well.

After the MRI, we went to the clinic, but we couldn't find anyone, so we went out for breakfast. Katie was hobbling pretty badly at this point, and her pain was getting worse. Still, she HAD to go to Build A Bear to spend a gift card she had, so we headed to the Columbiana Centre to get yet another stuffed animal. Katie did make a very cute dog, and she even made a bear for Erika.

While we were in Build A Bear, Katie's doctor called. She had reviewed the MRI with a radiologist, and they compared the last MRI with this one. THE GOOD NEWS: there is no progression of whatever the lesion is. THE WEIRD NEWS: they think this is an osteochondroma, which is a benign bone tumor. Katie's doctors always play it straight with me, and when I asked what the treatment is, she admitted she doesn't have a clue - hey, she treats malignancies, not good things! So, she was calling in a pediatric orthopedist to give us an assist on this one. It drove me insane all the way home to figure out what this thing is. I finally looked it up on the internet, and sure enough - it is a very common benign tumor. As I was reading more, though, it looks like Katie may need surgery or other medication. She certainly can't go on like this.

This was a great link with lots of information: http://www.emedicine.com/radio/topic496.htm

So, we spend the weekend worrying and waiting, but worrying a little bit less. Benign we can handle. It's the malignancies that we don't want to hear about. Katie has a bone scan on Monday, and more blood work and a visit with her oncologist.

Take care everyone.

Love, Michele

Wednesday, December 6, 2006 5:42 PM CST

Katie continues to have pretty bad pain, even on 24-hour motrin. She is still taking the oxycodone when she can't stand it. I called her doctor today and she has an MRI scheduled for Friday morning at the crack of dawn. She just hobbles around and can't do much of anything, then the oxycodone makes her sleepy. I just can't believe that a week ago, things were so good.

My aunt Reen continues to struggle. Aunt Reen is my mother's sister, and Aunt Sandy is Reen's twin. My parents got there last night, and quite a bit of her family is with her.

Let's get to some good news - the Gamecocks and Steve Spurrier have set up a Christmas dinner/get together with cancer kids and their siblings for next weekend...we are so excited. I have a feeling Mike will carry Katie on his back if she can't walk!

Take care everyone, and as soon as I know the MRI results, I'll post a note.

Love, Michele

Monday, December 4, 2006 8:42 PM CST

Looks like our moment of peace is gone. I mentioned in the last journal entry that Katie started to have pain in her leg. She can now barely walk. When she puts weight on her leg, she hurts. When someone touches it, it hurts. It even looks a little swollen today. Her oncologist had her go to x-ray to compare it with the one taken last time she complained of pain. This does kind of coincide with the end of ABT-751, which was the same as last time, but last time, her pain was fleeting - it lasted less than one day. This time, it has been four days, has gotten progressively worse, and now she needs oxycodone. Not good.

Katie had to have an IV today because she had to have a CAT scan of her chest to follow up for the line infection. It took three sticks to get an IV started, and Katie was traumatized. She had her child life specialist, two nurses and I trying to distract her, but it was miserable. These are the moments when we miss that central line, infection or not. Her poor nurse had to deal with Katie sobbing, shaking, and crying while she was trying to stick her - Katie can manage to make her veins hard as rocks and nothing will go in. Needless to say, there was a bribe gift today, but luckily - it was just pencils. Katie is enthralled with any type of mechanical pencil - 0.7mm lead, of course. She hobbled into Staples just to get a new pencil. I was glad, because after all that trauma and pain I thought I was headed for a BIG bribe gift.

We'll let you know what the tests say...in the meantime, Katie is resting, and not going to school because of the pain.

Take care, everyone.

Love, Michele

Sunday, December 3, 2006 3:26 PM CST

Everything is good....

Katie had a great week health wise, until Friday, then there was a little blip. But just a little one. She made it to school every single day.

On Friday, Katie's school nurse called to tell me two things - that there were two cases of chicken pox in the school (very dangerous to an immuno-compromised child), and that Katie had just stopped in and said her leg hurt a lot. I went to school, and we called Katie's oncologist about the chicken pox scare - there are two children at Southside that have it, neither one has any classes with Katie, and neither one was even on the same hallway with her. So, we decided just to let it go.

As for the pain, it is right below her left knee, which is one of those tumor sites. I gave her some ibuprofin, and left her in school. When Mike picked her up, she didn't even say anything - she was fine. I finally asked her after dinner if it hurt, and she said, "Oh, yeah, I forgot all about it - ten minutes after the medicine, I was fine." Whew. However, it has come back and today it really hurts. The best part of her week was last night though - she got to go to professional wrestling with her Daddy, and they had a great time. She chose that over the cancer clinic Christmas party at the zoo!

On Friday, we scheduled a few more tests for Katie and she is going to be busy every Monday in December (except Christmas Day), and every day after Christmas she either has a scan or an echocardiogram.

Also on Friday, we found out that my Aunt Maureen has turned the corner, and not for good. Her cancer has spread everywhere, and the chemo is not working. Things are not good, and Aunt Reen is in a lot of pain, and very out of it. Aunt Reen has been a breast cancer survivor for 8 years. She has the same fighting spirit as Katie - she never let it get her down. It just hurts to hear that she is hurting so much. Hospice will begin tomorrow, and hopefully they can get her comfortable.

Take care everyone.

Love, Michele

Tuesday, November 28, 2006 10:45 PM CST

Katie's blood counts from yesterday were very nice, and she had a good day at school today. However, she is very far behind and we need to have a new plan of attack for school. But she's such a smart cookie, she'll get back on track, I know it.

Check out the pictures - I think I may have figured this out, thanks to Katie's nurse at school (Ms. Odom) who got Ms. Saverance at Southside to send me e-mail instructions I could follow! Thanks, you two!

Love, Michele

Monday, November 27, 2006 7:53 PM CST

Hi, everyone.

No news. Boring, boring, boring. YEAH. Katie seems like she is back to her old self - sassing us, having tons of energy, laughing, playing, beating up her sister. It's like having a different child. You can't tell she is on chemo at all.

Now for the rest of us - Erika was sick all of Thanksgiving, and has managed to pass it on to me and to Mike. Katie, for some unknown reason, doesn't even have the sniffles. I made a great Thanksgiving dinner, but wasn't able to even smell it. I haven't breathed through my nose for four days. I asked the girls to write 10 things they were thankful for, and I was going to post them to Katie's website, but they made me sob, so I didn't. Let's put it this way - they were both thankful for family, God, and then Katie put "cancer, because it brought my family closer together." Wow. We sat down to say the blessing for Thanksgiving dinner and I couldn't even speak. Erika did a great job, though!

Katie had a brief appointment with her oncologist today (looks great! go home!) and she got her stitch out. It was pure agony - NOT. She barely even realized it happened at all. I hope someday she reads this and is EMBARRASSED by all her drama before we got there! Yes, my dear, you are quite the drama queen! Guess you get that from your mother...

Katie finishes her ABT-751 tomorrow (round 3 - how cool), and she gets to go to school like a normal kid. It's really unbelievable how quickly things can change. Oh, and by the way - her vein stick for the blood work today was absolutely no problem - she didn't cry, scream, make a sound. We have decided as a group to let this go on as long as Katie is ok with it, and not get another line. We all loved that central line because it avoided vein sticks, but I really think that is what made the past 2 and a half months so miserable. And - get this - we are going to go swimming at the YMCA this weekend! Katie hasn't been swimming since March 2006!

Take care, everyone. Thanks as always for all the prayers and support.

Love, Michele

Wednesday, November 22, 2006 2:42 PM CST

Boy, I'm glad we came home yesterday. Today looks like madness for traveling!

We had an interesting day yesterday. We met two of the rudest people ever, and in about fifteen minutes of each other. It was amazing. Monday evening, we got a call at the Inn from one of Katie's nurses that they wanted to repeat her chest x-ray because the last one done in South Carolina was so bad. We ran to do that in the morning, then headed to the voucher office to pick up our per diem for our meals. The same man who tortured us last time was there and he was just as ugly. Sigh.

Then, we headed to radiology where we met perhaps the most obnoxious radiology technician ever. She gave me a look while we were walking back like, "Who are you, and why are you here?" But I just ignored her. Katie had a t-shirt and a sweater on, and she said to Katie, "Take that off!" It was an obvious order. I mouthed, "please" to Katie, and she complied, but you could tell Katie wanted to say something. This lady barked orders at Katie the whole time. When we left, Katie asked me if she left her manners at home that day. Kind of funny for a child who can't say please for the life of her!

When we finally met with Katie's oncologist, we got wonderful news. Because Katie has handled the ABT-751 so well (all of these recent problems we believe are related to this line infection) we don't have to go back up to the NIH until after Katie finishes two rounds of this chemo. So, next time we go will be on January 2nd, 2007! We brought home two rounds of the chemo, and they have also cut down the amount of blood work she has to do - only one draw a week. Katie was psyched about that, given that she has no central line anymore. We will scan her again the week before and after Christmas for re-staging. All of this is also based on Katie's recent scans, which show no progression at all.

Our flight home was AWFUL. It was the bumpiest flight I have ever been on. Both of us almost used our barf bags. Katie said, "Mom, I haven't barfed through 9 rounds of chemo, I really don't want to start now!" No kidding! We managed to make it through, but we were so happy to land. The weather was bad in Columbia, though, so we didn't get home until 10:00 p.m., and we were beat.

When we got home, Erika, who has had a cold, was coughing like crazy. I stayed up half the night with her, and her cough was terrible. The girls were actually getting along and wanted to stay in Katie's room together, but I had to tell them no. No more illnesses for Katie!

Today it has been cold, rainy and icky, but we are so glad to be home. Katie and Erika have been arguing like crazy all day, and I've tried to get ready for Thanksgiving dinner. Ray (the fish) is fine - he made it through being cared for by Mike and Erika!

Have a great Thanksgiving everyone...

Love, Michele

Monday, November 20, 2006 6:47 PM CST

Hello from Washington. We had a very easy trip yesterday, but we were delayed. We did not make the 4:30 shuttle to the NIH, but had to wait for the 5:30 p.m. one - that's ok, we got here at about 6:15 p.m. We were rushing to get to Sunday supper (every Sunday evening dinner is provided by someone in the local community). Unfortunately, it was vegetarian Chinese and Katie looked at me like I had lost my mind. I would have loved it, but Katie told me that we were ordering Papa Johns and that was that. Too funny.

Katie was pretty emotional about getting stuck with a needle and losing her line on the way to Columbia yesterday - it made her talk a little about her feelings. She told me she is really sick of all of this, and she just wants to be normal. She even cried about it. It was so unusual for her, but I was actually glad to hear it. Sometimes she is just too stoic. Her little pity party lasted just about 10 minutes, then she was back to her usual self.

Last night, Katie got in the shower, and I couldn't get her out. Finally, I heard the shower turn off and I went into the bathroom to see if she had wrinkled into a prune. She had stopped up the tub, filled it, and was completely under water - something she hasn't done since March 2006! It was hysterical.

This morning, we got to the clinic on time, and discovered Katie has gained a pound! Woo hoo! No fever since November 11th, and she looks great. We slathered her with numbing cream to anticipate her needle stick. Alexis (a guy nurse) stuck her and he was awesome. I told Katie to look away and she told me, "No, this is fascinating." OK. Really. Since every other time you scream, cry and throw a tantrum? Who are you? Then...she got stuck...didn't make a sound and turned to me and said, "I didn't even feel that!" This afternoon, she asked another nurse if she had to get stuck tomorrow, and she was told no. That didn't suit Katie - she wanted to get stuck again. WHO SWITCHED MY CHILD WITH SOMEONE ELSE????

Our appointment with the dermatologist up here was interesting. They believe that this discoloration and rash on her trunk is actually her skin's reaction to the neuroblastoma in her body. They have the biopsy sample from last week here and are examining it today. They gave us some heavy duty urea acid lotion to start using, and we have to follow up in 6 weeks. I was just glad it wasn't some other type of cancer.

Tomorrow we will meet with the oncologist up here, get a follow up chest x-ray, and hopefully pick up Katie's next course of ABT-751. It doesn't look like there will be any problems continuing with this course of treatment, and we are glad.

Katie is off in the Children's Inn with a friend she made. She was very concerned that none of our friends were here, but she made another one, so things are good. To the Lipskis and the Smiths - we miss you and wish you were here. They had the Clarion Hotel trip tonight, but we didn't go because Katie has to do the 24 hour urine collection. So much fun.

We head home tomorrow evening - hopefully the airport won't be too crazed. Take care everyone!

Love, Michele

Saturday, November 18, 2006 10:56 PM CST

First of all, the fish's name is Ray. I think it kind of suits him. He is deep blue and purple, and his bowl has green rocks and a flower in it. He is like a ray of sunshine in our house, and I said that to Katie. Oh, no. The fish is named after Rey Mysterio - a professional wrestler. I'm all sweetness and light, and Katie decides to go for the pounding and the pain. Kind of funny, huh?

Katie and Mike got home at 6:30 p.m. Friday night. They were supposed to leave at 1:00, but there were many delays, including that her birthdate is STILL wrong in the records. Amazing. When they got home, we immediately went out for dinner to Redbone Alley, and we had a great time. Turns out Kathy and Cely were there, so when we were walking out, I told the girls and Mike that I thought we had a lot of fun, and they told me that of course I did because I got to see my friends. Yep - Kathy and Cely - I made Katie's homecoming all about me. Not surprised, are you?

Today (Saturday), Katie finally had her Day of Magic. A friend of ours from Charleston, Debby "Flash" Stevenson, has started a new cancer support organization called "Courageous Kidz." Flash gave Katie and Erika a trip to Charleston that included a shopping spree at Toys R Us, a limo ride to Hyman's for an incredible lunch, a carriage ride around Charleston, and Ben & Jerry's ice cream for dessert. It was SO MUCH FUN.

DeeBee got to go with us as well - she is one of the girls' counselors from Camp Happy Days. Real kudos to Hyman's, the carriage company, and Ben & Jerry's because they donated all of those items to Flash and us. Of course the biggest kudo goes to Flash. Sweetie, you just ain't right. (She kept telling me that that is the biggest compliment of all!)

Mike commented that he hadn't seen Katie that happy and relaxed in months, and he was right. Her favorite thing was the carriage ride, and she wanted to go again right away. She told me that was her first carriage ride, which really isn't true at all - we have taken both the girls at least three times. Then, Katie clarified - that was the first time she paid attention and listened to all the history! Of course, her favorite story was one that was completely made up by the carriage drivers (if anyone knows it - it's the story about the father who had three ugly daughters and built them each a house next to his).

The weather was gorgeous, and we had the best time. Sorry we couldn't share where we were going, but I wasn't about to jinx things. When we got home from the restaurant Friday night, Katie's voice was gone - and I was convinced she was getting sick again. But, she woke up feeling great. She didn't even nap in the car on the way to Charleston or on the way back.

One of the folks at the restaurant, Phyllis, really entertained us. She was very sweet and funny. She kept encouraging Katie to fight, and made us promise to come back every few months to visit and tell her how hard Katie is fighting. Hyman's also gave the girls t-shirts and stuffed puppies. Both girls were enthralled with the naked mermaid statute that was hanging on the wall behind us, and really felt she should be more like Ariel and wear a sea-shell bra. We sat at a table where Hottie and the Blowfish, and Hulk Hogan sat, and Katie (remember - my pro wrestling fan child) was psyched.

So - here's a thank you to Flash, DeeBee, Courageous Kidz, and all the businesses in Charleston that were so good to us. We had a wonderful, recharging kind of day. Tomorrow (Sunday) we fly out to Washington, and we will be home for Thanksgiving. Take care everyone!

Love, Michele

Thursday, November 16, 2006 6:14 PM CST

Didn't I start the last journal page with the roller coaster continues? Well, we just had a double loop....

Tuesday, Nov. 14th

The morning started off a little rocky. Katie had her first ever dermatology consult, and it didn't go that well. The doctor and nurse were very nice, but they immediately suggested a skin biopsy. Well, I thought it was just a scraping, but no - they used a hole punch in her skin - on her chest, near her right arm. The nurse could tell Katie was terrified and she did her best to calm Katie down, but the unknown, well, it's tough. They numbed Katie using a needle (first big problem). But, she was very numb by the time they took the skin section, and she didn't feel a thing. I watched the whole thing and was very glad Mike wasn't there - he would have passed out. She got one stitch, and we were out of there.

After that experience, we headed to the mall for a bribe gift and for lunch. We had to be back at the hospital for an injection for the MIBG scan at 1:00, and we got to the mall at 11:15, so we had a good time. Katie made "Mumble" the penguin from the new movie Happy Feet while we were at Build a Bear, but she named her Chilly. She is very cute. We ate lunch, then headed to the Children's Place just to see if there were any sales. As I was at the cash register ready to check out, my cell phone rang. It was the hospital - and I was sure it was the nurse from the clinic giving us Katie's blood counts. Oh, I was right about who was calling but wrong about the reason...Robin said, "We need you to bring Katie in ASAP because she has to be an inpatient.." I almost passed out. Then Robin explained that the latest cultures grew something from her line, and that the docs determind that the central line had to go and that she needed IV antibiotics ASAP. Katie turned green when she heard that news, and she cried all the way to the hospital. See - without a central line, Katie gets stuck with needles.

We got to the hospital, and ended up having the scan, then being admitted. Luckily, she got to continue to use the central line until the next day, when she had to undergo surgery to remove it. That evening, Mike came with some stuff, and Erika spent the night with her buddy Michael.

Katie started to get her antibiotic (vancomycin) that evening. She had this particular antibiotic 7 years ago when she was in treatment before and did fine. This time, 15 minutes after it started, she began to itch - all over, and it drove her insane. We had to stop the drug, give her benadryl, then start it again much more slowly.

One really funny thing - while we were at the clinic waiting for our inpatient room to get ready, we were hanging with the nurses. Katie was genuinely ticked at two of her oncologists and the infectious disease doctor, so she drew a picture of them - really funny. Then, she found the signature stamps of her docs, stamped a blank page, and wrote: "I promise to give Katie money every time she gets stuck."

Wednesday, Nov. 15th

This was a tough day. We were the first surgery of the day, and so Mike and I got up at 6:00 a.m. to get ready. Katie was really, really not happy. We were supposed to leave the unit at 7:00 a.m., but that didn't happen. Finally at 7:45 a.m., our nurse informed us that they couldn't find Katie, that surgery had called our house to try to find us...it was a nightmare. The surgeon was waiting on us, and we were sitting right there, anxiety mounting.

We finally got over to the surgery waiting area, and got to see Marolyn, the child life specialist we have known for years. When we were waiting, that was the only blessing we could think of for the day! We love you, Marolyn! When we got there, everyone discovered that Katie's birthdate was wrong on her chart and her bracelet, so that caused another back up. Then, a nurse came to see me, and said, "So, you're her foster mom?" Meaning - the next thing out of her mouth would be, "So, where is DSS's consent for surgery..." Well, Mike took one look at my face, and he said I looked like I was about to explode. I said (I thought pretty nicely), "I'm her mother, and I'm on her birth certificate if you would like a copy." Turns out someone - must be someone who doesn't know us - has put all over her chart that we are Katie's foster parents. Since when does a foster child have the same last name as the foster parents? Especially Krize? AAAAHHHHHHHH!

While we were discussing things with the surgeon, I questioned him about doing a biopsy on that lump in her chest. He wasn't that concerned about it, but said he would do it if I felt it was necessary. I asked him to do it since he would in that area anyway, and she would be asleep, and he agreed.

The surgery went fine, and Katie did really well. We went back to her room, and she had an echocardiogram and day 2 of the MIBG scan. She was in a lot of pain from the biopsy, and that made three holes in her chest - the skin biopsy, the rib biopsy, and the central line removal hole. Yeesh. And, she woke up with an IV in her right hand - not her favorite place, given that she is right handed. And it hurts.

We met with the infectious disease doctor, and she was great - very intense, and she just wants to get Katie better. The bacteria they found is a skin bacteria - something everyone has, it just has managed to get into Katie's line. She has no idea if the fevers were from this infection. It is such a rare thing to happen, that there really is no standard treatment. Vancomycin is her best guess. But, because we have this fun thing on Saturday, then Washington on Sunday, the plan is to do vanco until Friday then she gets discharged on the antibiotic Cipro. They have sent the bug to two different labs, and if we have to change antiobiotics we will. This stuff is so rare that Katie could end up in a medical journal. Only Katie belle.

Because Katie has to be premedicated with Benadryl, she's been sleeping quite a bit. Plus, she is getting oxycodone for pain from the biopsy.

Thursday, Nov. 16th

Today was a better day. Katie had day 3 of her MIBG scan, and her MRI today. At nuclear medicine, the folks there gave her a fish (with bowl, rocks and food, too!) She admired their fish the other day, and they asked me if it would be ok if they gave her one. She was so happy. She smiled for the first time in days. We put the fish in his bowl, and she just can't stop watching him. It's lovely!

NOW FOR SOME GOOD NEWS.

The scans show NO PROGRESSION! The MIBG isn't lighting up anywhere, and the bone scan shows no change (still shows those things in her legs, but no different). We don't have echo and MRI results yet, but we are hoping they are fine. And the best news of all - that lump in her chest is definitely not cancer! It is probably just a side effect of the thorocotomy. Whew. From this hospital, we are hearing that the ABT-751 is doing the trick! Hopefully we will hear the same good news from Washington.

By the way - no fever at all since Saturday. Katie will not get another central line until we can make sure that this bug is all gone. One good sign is that the peripheral culture that was done last Friday has not grown anything, so we are hoping the bug was limited to her line.

Katie will be home tomorrow and then we will have our fun day on Saturday, then leave for Washington on Sunday. I can't talk about Saturday yet - we are still worried about a jinx. But, it really is going to be fun!

Love, Michele

Monday, November 13, 2006 10:03 PM CST

Not much news to report after Katie's doctor visit today. No one is concerned at all about the positive report of a gram positive rod in her blood last week. The explanation is that it came after 48 hours, it hasn't been repeated, and they believe it was just a contaminated sample (the bacteria came from her skin, and is not floating around in her blood and making her sick). She was in a great mood most of the day, and had no fever at all, so that led to a "she's fine, take her home, everything is good." Frustrated doesn't begin to describe how we feel.

Tomorrow, Katie has an appointment with a dermatologist about the rash (she has an appointment with a dermatologist at NIH as well on Monday), and she'll have day one of her MIBG scan. The MIBG scan is a special one just for her neuroblastoma. The lump in her chest seems larger to me.

I feel like we have landed in a surreal place. Two other neuroblastoma survivors we know have both progressed - one child relapsed after 13 years from his original diagnosis, and he is now married and in college. Another is just four years old. This disease is just hideous.

On a positive note, we washed Katie's hair tonight and it is getting curly - it is just beautiful. She doesn't want to show it to anyone, though - not even a fellow survivor! We have met a family in Columbia that, in the month of February 2006, found out that the daughter had leukemia and the mom had breast cancer. We saw them today in the clinic, and mom's hair is growing back in and she showed it to us, but Katie would only let her peak at hers. She is convinced the kids at school will make fun of her. After all, they are "so immature, Mom." (Her words). She told me today that someone blew up a stink bomb in the courtyard at school, and then at the Veterans Day assembly, some kids were making fun of the soldiers. That didn't suit Katie at all.

So, the week will be filled with scans, echocardiograms, and MRIs, but we are ending it with something really wonderful. I don't want to jinx it, so I'll tell you all about it afterward, but hopefully Saturday will be really special. We leave on Sunday for Washington, again. Take care, everyone.

Love, Michele

Sunday, November 12, 2006 9:31 PM CST

It was a quiet weekend here. Katie woke up on Saturday with no fever, raring to go. Katie and Erika got their wands, and insisted that we were going to Magiquest in Myrtle Beach right then and there. I just laughed and laughed. There was no way I was driving to Myrtle Beach when 12 hours before, Katie's temperature was 103 degrees and she had some bacteria that could be anthrax! No thanks!

I told them we could go to the library, and I wanted to take their pictures for our Christmas cards because it was so beautiful outside. I also promised lunch out, if they were good. They actually went for this plan (good thing I have two kids who love the library!) We got to Timrod Park, shot about 5 minutes of pictures, when Katie told me her tummy hurt. We went to the library and she promptly fell asleep in the car on the way there. Our Florence friends are going - are you kidding? See - the library is about 2 minutes from Timrod Park. We spent about 10 minutes in the library (record time) and Katie refused lunch out, and we headed home. By the time we got home, her temp was 102 degrees. Big sigh. She spent the rest of the afternoon in bed, and Erika and I went to get groceries.

The fever went down and then went back up again in the evening (at about 7:00 p.m.), but since then - nothing! She had no fever at all day, and I think she surprised everyone by playing outside - twice! I couldn't even believe it. She was in a good mood, but a little quiet. Erika and I did get to go to the Wiggles. I think she was the oldest child there. My usually outgoing, wild child sat stock still during the entire show, except for when she went to the bathroom. It was really pretty weird. We had a good time at dinner telling Mike and Katie about it, though!

Hopefully tomorrow we'll find out exactly what this is. I hope she can get most of a school day in - her appointment isn't until the afternoon. Thanks for all the notes, thoughts and prayers.

Love, Michele

Friday, November 10, 2006 7:31 PM CST

The roller coaster continues....

After a wonderful day Wednesday, Katie woke up on Thursday with another raging fever. She spent half the day sleeping in my office, and the other half sleeping at home. I was in contact with our local oncologist, but again - she has no other symptoms other than fever or fatigue, so I was told to treat the fever, and call with changes. Her chest x-ray was abnormal, but it was better than the last one, so everyone kind of shrugged. Good news is that Katie's bone scan shows no progression, so for that, we are thankful.

This morning, Katie woke up with no fever, but no energy either. She got ready for school, and we took Erika early. Katie went with me to get my coffee because it was still too early to take her to school, and while we were headed to Krispy Kreme she started to shake. Katie with the shaking chills is not fun to watch. So, we headed home and sure enough, by the time we got home her temp was 101.8. I gave her some ibuprofin and headed to work to meet with a client. I called the clinic immediately at 8:30 a.m. when they opened, and one of her nurses told me she was just picking up the phone to call me. They wanted us in right away. So, I ran home, grabbed Kate, and headed for Columbia where we spent most of the day.

This is where the news gets interesting. One of Katie's blood cultures finally started growing something - a gram positive rod. This type of bacteria is very rare, and serious. It is in the same family as anthrax and diptheria, but her docs don't think she has either one of those. Still, I did some research on this bacteria, and it is scary.

It is Friday night and Katie is asleep in her bed with yet another raging fever. Oh, and she's lost even more weight - she has now lost 17 pounds since September. She had antibiotics at the clinic today, and we have to go in Monday anyway for a physical exam and more blood work. We had to cancel a trip to the ballet tonight. One of our friends' daughters is dancing the Sugar Plum Fairy role in the Nutcracker - the girls love that ballet, but we just couldn't go.

On Sunday, Erika and I are going to see the Wiggles in Florence. She is so psyched. I'm definitely going to need something to help me sleep this weekend. We are just so scared.

I hope they can find something to help her, and help her soon.

Love, Michele

Wednesday, November 8, 2006 6:30 PM CST

Let's see, where was I...last update was Sunday, and here it is already Wednesday.

The past few days have been unnerving for Mike and me. Katie's fevers continued through last night. And they were huge - yesterday she hit 103.6 degrees, and guess what - she was standing in the cancer clinic in Columbia. Monday, Katie went to school in the morning. Her temp wasn't really high in the morning, so I sent her on her way. By the time I picked her up at 1:00 p.m. for her doctors appointment in Columbia, she was at about 100 degrees. When we got to Columbia, she was at 101.3.

Her physical went ok, and there was blood work done (and cultures on her line), but really - she looks pretty good. She has now officially lost 15 pounds since September, but she does not look gaunt or ill. Katie really doesn't eat much anymore, and I think she might actually be getting taller. So, even though Katie had a fever, we were sent home. The reason I said that her physical went ok is that when I was showing her nurse practitioner the weird rash on her chest, I rubbed past a hard nodule in her chest. It feels like a little rock. The NP and her doctor grew very concerned about this.

Katie and I talked about heaven, death and angels all the way home from Columbia. She had some very interesting questions. She wanted to know that if she died at 12, then her friends lived to be 60, how could they hang out in heaven because they wouldn't even be the same age. I told her I thought they would probably seem to be 12 to her in heaven, and they would all still be good friends. She was also very interested in talking about MiMi's death (Mike's mom), and she finally told me that she was angry that I wouldn't let her see her MiMi before she died. Mike's mother did not look like herself, and as a group, we decided that none of her granddaughters needed to see her like that. Then, at the end of the conversation, she wanted to go to Toys R Us to check out the electric scooters. Talk about 180 degree turn around!

Tuesday was election day, so the girls were out of school. I had court, so Mike took Katie for her bone scan. They had a problem in Nuclear Medicine - the first one for her - and practically insisting on sticking her with a needle. Papa Bear, who was standing in for Mama Bear, absolutely would not have his Baby Bear get stuck for no reason, and he stood his ground, and they used her central line. I personally think that it was more Mike's problem, because he is about as needle phobic as Katie, but he refused to let them stick her. After the injection, they had to wait 3 hours for the scan, so my two shopaholics were headed to a mall and for lunch, when they ran into one of our doctors. He told Katie and Mike that he wanted a series of chest x-rays for the nodule in her chest, and so there went the shopping trip (I'm not too sad about that, given that even though Katie has more money than Mike and I do put together, Mike ALWAYS pays for whatever she wants (Mama Bear occasionally makes Katie pay for her own stuff).)

Mike and Katie went to the clinic before they had to return for bone scan, and that was when it was discovered that her temperature was 103.6. So, after the bone scan was finished, she had to go back to the clinic for another physical exam. She has no other symptoms whatsoever - no cough, no runny nose, no shortness of breath, and no pain anywhere. We were really afraid she would go inpatient, but instead - they came home.

By the time Katie was home, and the ibuprofin had kicked in, she was in great spirits. She did her homework, we watched Dancing with the Stars together, and she went to bed at 9 p.m. No fever - none at all. Mike got up early this morning, and when he got up, I went in to take Katie's temp - it was normal! She made it through the whole day at school today, and when I picked her up - normal temp! She has been doing homework since we got home, and she seems like she feels great. I am so hopeful these fevers are gone for good.

I have been convinced the past few days that Katie's cancer is progressing rapidly. However, today was such a good day that I feel a little more relief, and not so panicky. We have no results of the x-rays or bone scan from yesterday, and there are more scans next week. Last time we were in Washington, our doctor there asked us not to panic if this set of scans showed progression - she wants us to come anyway, and talk about things. Katie's appointment with a dermatologist up there is in the afternoon on the 20th. She finished her chemo last night, and so far, her blood counts are awesome. Katie's hair is just coming in more each day, and with the high humidity yesterday it was wavy and gorgeous.

I have to go - Katie needs the computer for school...thanks for always keeping us in your thoughts and prayers and for leaving us messages on the guestbook and by e-mail. We appreciate all of your support.

Love, Michele

Sunday, November 5, 2006 12:50 AM CST

Hi, everyone.

Thursday Katie went to drama club, and Mike picked her up. She was complaining of a headache, so when I got home, I checked her temperature - it was 103 degrees. To say we are frustrated is an understatement. Frustrated and scared.

We called Katie's doctor in Columbia, who, after the past month of fevers with no known cause, did not make us come to Columbia. He called it "Katie fever" and asked me to check in on Friday, and to keep a close eye on her. I had to watch for changes - pain, cough, sore throat, labored breathing...it was kind of nice to be trusted enough to do that at home. We gave her a little Tylenol, and an hour later, she was fine. But because of the fever, I didn't want her to go to school on Friday.

I left Katie at home (her choice) on Friday, and went to the office. I called her a couple of times, and she asked me to come home and have lunch with her, and I gladly did. She kept checking her temp and it was normal. I got home at about 12:30 p.m., and her temp was normal. We ate lunch together, and I was feeling really guilty about keeping her out of school. When I was getting ready to go, she asked me to stay for the rest of the afternoon. I called the office to check on what was going on, and had Katie take her temp one more time, just for the heck of it. Sure enough, she was up to 102.5 degrees - in just an hour. She was talking to me like nothing was wrong. It's almost eerie. Since Friday, Katie has continued to spike these huge fevers, yet seem like she is fine. She is tired, but wouldn't you be with a fever of 103 degrees?

It is now Sunday, and just a few minutes ago, her temp was 102.4 degrees. She's watching football with her Daddy, all wrapped up in a blanket, with a raging fever. We have an appointment in Columbia tomorrow for a physical and some blood work. Her chemo has been going down no problem, and she doesn't have any of the usual side effects, except for the fatigue, which could easily be related to the fever.

Katie will have a bone scan this week, then all the other follow up scans next week. I wish we could find the source of this fever. If Katie's cancer has progressed even further, we'll have to decide what to do next...

Back to Halloween - Katie's costume she ordered on the internet never came in. She ordered this cute little ghost costume. So, she put the scrubs on that she got in Washington the last time (she had to wear paper scrubs into CAT scan, then wore them the entire day that day), a mask, a bandanna, and latex gloves. She was quite the surgeon. We walked and walked with some friends, and she made it, but she sent Erika and Garrett to the door of most houses to gather her candy for her. Erika was a very cute witch. They had a great time trick-or-treating. We walked to the Cloisters (a neighborhood close to ours for our out of town friends), to the Mustache House - it's a house that has ivy growing over the front door and it looks like a mustache. They decorate like crazy for every holiday, but their Halloween display is really cool. Oh, and by the way, they are Penn State fans, and have a concrete Nittany Lion on their front yard. We just have to love these people.

Well, I must get back to laundry and take Erika to a birthday party. I hope these fevers break soon. Pray for that, ok? Thanks!

Love, Michele

Tuesday, October 31, 2006 9:05 PM CST

It's been a long and adventurous three days....

Sunday, our flight went off without a hitch. Katie enjoys flying, so it was kind of fun. We didn't have seats together, but the lady sitting next to Katie gave up her seat so I could sit next to her. When we arrived at the airport, we missed the shuttle to the Children's Inn by about five minutes, so we had to wait another hour. When we got to the Inn, volunteers had brought supper, and much to our delight, our Inn "family" were all still there. Mary; Dianna and Jim and their children JJ and Nicki, and Kim and Jeremy were all right where we left them! Katie was thrilled because she had friends to play with right away. We threw our stuff in the room, and went to eat and play the rest of the evening. We even got to have a room in the brand new wing and it was great.

Tuesday morning, I thought we would have a brief appointment with her doctor, then pick up her chemo and possibly head out to the Smithsonian. Duh - should never make plans. Katie didn't even have her vitals done until 10:30 (our appointment was at 9:30), then the fellow who was supposed to do her extensive physical had to go do a bone marrow aspirate on someone else, so we wandered around until 1:00 waiting on him. We saw him, and Katie had her full physical. Her blood work was really good, but her skin was causing him some concern. Katie's got very dark splotches on her arm and trunk, and her fingernails and toenails have black streaks. This has all been looked at in Columbia where no one thinks it is a big deal. Not at the NIH, though - big deal there.

We left to get lunch, because after the physical with the fellow, we had to meet with Katie's primary doctor. As we were leaving for lunch, laughing and cutting up (Katie had been in an awesome mood since we got there - no fevers and she felt great), our wonderful nurse, Robin, saw us and gave us some horrendously bad news - one of Katie's test results had come in abnormal (her ability to clot), and because she routinely gets Heparin (a blood thinner) in her line, they had to do a peripheral stick to get more blood to test. Meaning - Katie had to be stuck with a needle. Immediate, sudden, horrifying mood change. Robin numbed Katie's arms and sent us to lunch to let the numbing cream work. She cried all through lunch, could barely eat, and insisted on walking like a snail back to the clinic. It was horrible. I cried, too. The stick itself was easy - Robin is a great stick, and she nailed it on the first try, got enough blood for two tests (good thing, because they had to run a second test and would have had to stick her again). Robin knew how traumatized Katie was (one look at her face and you could tell). After sticking her, Robin's hands began to shake - I was just glad they didn't shake DURING the stick. Katie decided she never wants to go back to the NIH again. She is STILL not over that.

After all of that, we left to go back to the Inn - at 4:30 p.m. So much for the Smithsonian. The families staying at the Inn were invited to the Clarion Hotel for a free dinner, so our "family" at the Inn all went, and we had a great time, although Jeremy - Katie's 10 year old friend - wasn't feeling that great. We got back about 7:30 p.m., settled the kids down with a movie, and were getting ready to play a game (the adults were), when I realized that my purse was missing. After many anxious minutes, it was discovered that I left it on the bus, and the bus driver kindly got the bus out of the parking area, drove back to the Inn and delivered my purse, with not a thing missing. Jeremy, who was headed back to the hospital as in inpatient, insisted on staying with me, and he even hugged me and told me there were worse things than losing my purse. Thanks, kiddo - you made my day just with that hug.

Since we were all finished, I figured we could sleep in then catch the shuttle to Dulles at 11:30 a.m. for our flight at 2:45 p.m. Well, luckily we have made these wonderful friends who convinced me to get up early, to go the hospital to pick up our voucher (we get a per diem for food while staying at the Inn), because it would take a long time. As we were leaving the Inn at about 8:15 a.m., one of the volunteers ran out to see us, and told us that our nurse had requested that we go to the clinic first, and also let us know that Katie's chemo wasn't ready yet. When we got to the clinic, we were told that Katie's rash and fingernails were going to be photographed because the dermatologist at NIH requested it - we will see him when we go back in three weeks. Well, I didn't see a camera in Robin's hand so I asked where - sure enough, the NIH has its own medical photographer - you learn something new every day. So, today, Katie had naked pictures taken of herself. Poor thing has been subjected to just about everything now. The rash is all over her chest and abdomen so there was no way to do these pictures clothed. These will not be added to her website!

After leaving the clinic, we went to the pharmacy (chemo not ready yet), and to the vouchers. I won't go into the whole story with the vouchers because this update is already too long, but suffice it to say that the man working there and I did not click. Because of his rudeness and incompetence, we did not finish with vouchers until literally two minutes before the shuttle left for Dallas. Quite traumatic. AND - I left Katie's chemo in JJ's room when I was saying goodbye to him and his family. But, I remembered the chemo and went back for it.

The plane ride was uneventful - there were all of 10 passengers. What was eventful is that we realized on the plane home that Katie had left all of her DVD's (quite a collection) on the plane we took from Columbia to Washington. So, tomorrow, I will call United and see if they can find our DVD's in lost and found. BIG SIGH.

We raced home, ate quickly, and headed out to trick or treat. We had a good time, but when we got home, Erika decided to punish me for leaving again, and not do her homework and give me a hard time. It's 10:30 p.m. and I need some rest. Katie starts her ABT-751 tomorrow evening here at home, and hopefully we'll be able to get back into a routine.

Some other time I'll have to tell all of you about the fun things - like the fish with teeth in the tank at admissions, or the three legged man, or the great bribe gifts we bought at the gift store. But for now, I'm going to bed.

Good night everyone.

Love, Michele

Saturday, October 28, 2006 7:27 AM CDT

Yesterday was a quiet day - for Katie. She was still running fever, and was exhausted all day. It wasn't a quiet day for the rest of us - Charlotte (our puppy if you didn't know) is sick also (doesn't have a fever - other things), and I was on the phone with Katie's doctors in Columbia and Washington all day, as well as trying to work a little bit in between.

Katie started on fluids yesterday because - as usual - she doesn't drink enough and all the fever she has would make a well hydrated person get dehydrated anyway. Oh - the cultures have not grown anything, so we are back to "I don't know why she has fever..." She continues on her antibiotics but luckily we are doing the antibiotics and the fluids here at home. She is hooked up right now to a bag of fluids that will run for 4 hours this morning. The home health agency brought us a mini pump in a back pack. Hey, Phyllis - when do I get my honorary RN :)...?

Charlotte was put on antibiotics too, and she seems to be feeling better. We are leaving out tomorrow for Washington, on schedule. We have manipulated her fluid schedule so that we won't freak out an airline by having Katie carrying a back pack full of clear fluid onto the plane.

I'll update from Washington if we have time...

Love, Michele

Thursday, October 26, 2006 9:20 PM CDT

Here we go again...

Katie woke up this morning with a fever, so instead of going to McLeod for blood work then heading off to school, we went to Columbia to the cancer clinic.

Katie has no other problems other than being tired. By the time we got to the clinic, her temp was 103.4 degrees. She had shaking chills, too. Her blood work was great, though, so she got a dose of antiobiotics and we got to go home. She barely ate anything all day (she had pancakes for dinner, but she wasn't very interested in that at all). She ran fevers all afternoon and evening, so she will probably have to get antiobiotics by IV tomorrow again, as well. She is exhausted.

We have no idea how this will affect our trip up north. Katie has no cough, runny nose, any other aches or pains or complaints other than having fever and being tired. This is very similar (OK, exactly like...) what she went through two weeks ago in Washington. I'm worrying about tumor fever again.

In happier news, our little one turns 9 years old tomorrow. I can't believe it. Erika will always be my baby, though...She was so cute this morning - Katie's doctor told us to pack a bag so that we WOULDN'T have to stay (kind of reverse jinx the fever), and Erika ran upstairs and went room to room helping us pack. She has been in rare form lately - we were reading a book together about a princess who falls in love, and I commented that the prince was kind of handsome, and she told me he was "Hottie McHottie." I laughed so hard my side hurt. She claimed she made it up, but Katie told me that she heard it on some cartoon. Erika is a riot.

Here's to no more fever, and a safe, easy trip to Washington.

Love, Michele

Monday, October 23, 2006 9:21 PM CDT

Hi, everyone. Katie is doing pretty well. She had a visit with her SC oncologist today. She is having some pain in her lower left leg and told her doctor about it. The doctor authorized pain medicine, but by the time Mike and Katie got home, she said the pain was fine and she didn't want any meds. We don't have her blood counts yet, but so far, she seems to be handling the ABT-751 very well.

She also shared an upsetting dream with Mike - she dreamt that a surgeon had to remove both of her legs because of these new tumors. Erika went to skate night with her school tonight so Mike and I got a chance to really talk to Katie about the new tumors and what they mean. She's so stoic, and such a good kid, but this has got to be overwhelming to her. I asked her - twice - if she wanted us to not talk about things like her cancer in front of her, and she said no - she wants to be actively involved in her treatment and she wants to know what is going on. I can barely handle things, and here Katie is just trying to be a 7th grader with a social life.

On Sunday, we leave again for the NIH. We get to fly this time, into Dulles. It will be a short trip - only two days, and we fly home on Halloween, just in time for trick or treating. Katie's having a tough time deciding what to be for Halloween - she has even debated about going trick or treating at all seeing as she is the huge age of 12, but I let it up to her. I can't remember when I stopped trick or treating - Beane, Oz, Aulenbach, Tracy, Kelly - when did we stop? Remember when we went trick or treating for UNICEF in high school dressed as Army, Navy, Air Force and Marines?

So, any suggestions for Katie for Halloween, go ahead and put them on her guestbook or send us an e-mail. She has already rejected doctor/nurse/surgeon (even though the medical profession to us anymore is truly scary!) so you don't need to suggest those!

Take care.

Love, Michele

Thursday, October 19, 2006 5:16 PM CDT

Katie is doing all right - not great, but all right. She made it through school yesterday, and half of today. She came home at lunch time with a very sore tummy and being very tired. She is asleep right now (about 6:00 p.m.) The girls got their report cards yesterday, and Katie had all A's, one B, and one incomplete - just astonishing given what she has gone through. Erika's was just as awesome (she doesn't get grades yet), and given what SHE has gone through, it is equally as astonishing. We are so proud of our girls!

Katie had her first blood tests post chemo today, and so far, so good. Her hemoglobin (red cells for energy) and white cells (fight infection) were both low, but not overly so. Her ANC (ability to fight infection) and platelets (helps with clotting) were fantastic. Her hair continues to grow, and it is beautiful. I have tried to convince her to go without a hat or bandanna, but she's only comfortable doing that at home and in our neighborhood. Heck, she's in 7th grade, who can blame her.

Thanks for checking in, and as always, we appreciate your love, support, and prayers.

Love, Michele

Tuesday, October 17, 2006 4:17 PM CDT

WE ARE HOME!!!

It was a miserable drive with 100% rain all the way, and trucks splashing us constantly, but I was the only one that minded it...Katie slept for 5 of our 7 hour trip. I felt like I was alone...

Katie's doctor at NIH called while we were driving - the MRI definitely shows three lesions on her bones, and one of them is about to encroach on the cortex of the bone, so it will probably cause pain soon. Her doctor (who is kind, sweet, intelligent and a wonderful person) said, "But that's good - because now we can measure how well the ABT-751 is working." I kind of gritted my teeth -more cancer, good? I see her point, but it made me extremely sad. Good thing I like her so much, or she may have been the victim of one of my lashing outs like at CT yesterday!

One of the problems with this diagnosis is that her MIBG scan didn't light up. Sometimes, children do NOT take up that isotope, but Katie has a history of her cancer taking it up, so everyone is confused. Katie's doctor from NIH immediately called the top doc in the country who deals with MIBG and he explained that sometimes these small areas may not light up, but not to give up on the MIBG just yet. It made me glad to have this kind of expertise for her care.

Today, Katie took her last dose of ABT-751, and we made our travel arrangements back to Washington for October 29th. We'll only be there (hopefully!) for two days - home in time to Trick or Treat!

Katie is very worried about school tomorrow given her exhaustion level - if she took a 5 hour nap after sleeping all night, what on earth will she do in school? She's going to try anyway. Tonight, we are going to dinner to just be together. Erika and Mike did great together and we all missed each other so much.

Take care, everyone.

Love, Michele

Monday, October 16, 2006 5:13 PM CDT

It was another long day here, but it looks very good for us to come home tomorrow! Yeah!

We started the day off with a CAT scan. I am happy to report that our bad experiences with CAT scan are not limited to Richland Memorial, we had a bad experience here, too. The contrast is already mixed here, and it tastes TERRIBLE. Katie was given this giant bottle of - get this - berry berry flavored thick milk (it was SO NASTY). Everyone got the same bottle - the guy next to us who weighed 250 lbs, the woman across the way who was about six feet tall, and Katie. She made it halfway through, and just about vomited. I told her to sip a little bit to keep going, but that was it. I was in mama bear mode. Then, three times I had to remind them that she had a central line and did not need to be stuck, but guess what - they called her in to start an IV. I was livid at that point, and Katie was going, "OOhhh, Mom's causing trouble!" The whole scan took about 5 minutes - a lot less time than at Richland, but it was still a nightmare.

We already got the results and the abdominal CAT scan was clean! Yeah! So, the reading off the MIBG scan in her abdomen was nothing. Good news.

Katie's MRI went off without a hitch this afternoon. She slept through the whole thing, and we got to do a little shopping before heading back to the Inn. If Katie stays fever free, we can head out early tomorrow. Even if she does run a fever, then all they want to do is check her out tomorrow morning, but we will still be on our way tomorrow. Katie finishes her last dose of the first round of ABT-751 and she has done great. The chemo was nothing - it's these unexplained fevers that are baffling. One of the fellows actually said he may agree with me - this is tumor fever. I told him I was literally praying to God for infection, because tumor fever was the worst possible explanation.

Take care everyone, and hopefully the next update will be from South Carolina!

Love, Michele

Sunday, October 15, 2006 6:43 PM CDT

Our day started off with yet another fever - 102 degrees at 5:00 A.M. Katie had a late morning appointment for her antibiotics and more blood work and cultures, but no new complaints. She was checked out by two doctors, and we were sent on our way. It is now 7:45 p.m., and she hasn't had any new fever, and seems like she is getting back to her usual self. She is out painting with some other kids from the Inn, and having fun.

We went to the National Aquarium today to get out a little bit. It was beautiful, but we had a short visit. Katie slept all the way there and all the way back. She has only perked up since we got back at about 5:30 p.m. Still, it was nice to get out.

Tomorrow, she will have a CAT scan and an MRI, plus a physical by her doctor. Nothing has grown in the cultures thus far, so these fevers are still unexplained. Oh, and in the meantime - she has taken her new chemo without a problem. Oh, yeah, - that's why we are here! We are hoping to leave here Tuesday. Erika and Mike are really missing us, and we are really missing them. We want to go home!

Take care, everyone.

Love, Michele

Saturday, October 14, 2006 12:54 AM CDT

Well, plans change....at 6:30 p.m. last night, when I finally woke Katie from her marathon nap (4 1/2 hours at that point), her temperature was 103.2 degrees. We called the doctor and because her symptoms were only fever and fatigue, we didn't have to go inpatient. Instead, we had to come in this morning for another dose of antibiotics and a physical exam by a doctor. I gave her some Tylenol last night, she perked right up and I had to drag her off to bed at 10:30 p.m.

At 5:30 a.m., I heard Katie moaning in her sleep, so I got up, felt her cheeks and she was on fire. I took her temp, and it was 103 degrees. I called the doctor, and because we were coming in anyway, we didn't have to go in right then. At 9:30 a.m. when we arrived at the hospital, her temp was normal (but this was after another dose of Tylenol). Three doctors looked at her. She was sent for a chest x-ray which essentially looks like last week's xray, so we were sent on our way. They also did a urinalysis and culture of her urine. Unfortunately, we were asked not to leave the local area - JUST IN CASE.

No one can figure out what this fever is. Her white blood cell count is high, which indicates an infection, and not tumor fever. Unfortunately, the cultures that were drawn from her central line were somehow contaminated with too much blood - very bizarre. So, we had to do new cultures today. Also, we got some more concerning news today that the MIBG scan from South Carolina may show some new activity on her original tumor site (in her abdomen by her right kidney), so on Monday she will have a chest, abdomen, and pelvis CAT scan, along with an MRI of her legs, more visits to the doctor, and more blood work.

I think I have told you all about Katie's Hero Beads from Candlelighters. Those are the beads that represent each thing Katie has to endure - like CAT scans, chemo, xrays, etc. Her beads are now three strands long (each strand is about 20 inches long). We'll be starting our fourth strand now. She doesn't complain about any of this stuff, though. She's not too fond of all these doctors - she gets tired of having to turn the TV off and answer the same questions over and over, but send her for a CAT scan, or an xray, or make her do a blood test and she is as good as gold. They are called Hero Beads for a reason. If I had to endure what she has had to endure - JUST THIS WEEK - I would me a monstrous, evil, nasty witch. Instead, I have a little girl who can still smile and be sweet.

Take care everyone.

Love, Michele

Friday, October 13, 2006 2:23 PM CDT

Hi, everyone.

The rest of Thursday was great. We left after the 4:00 p.m. blood test, and went to the local mall. We shopped and ate and had a really good time. We made it back for the 8:00 p.m. blood test, then headed back to the Inn. Katie and three other children settled in to watch "The Sandlot" and made popcorn. It was so nice! I finally dragged Katie away at about 10:15 to change the dressing on her central line and get some medicine in her.

This morning, we woke up and got ready to go to the clinical center to get one blood test and her chemo. After we got dressed, just for the heck of it, I had her take her temperature - 100.2 - uh oh. When we got to the clnic, it was 100.4 and everyone kicked into high drive. They did cultures of her line, and Katie was examined very closely by her doctor. The only complaint she has is that she is really tired. The nurse checked the results from previous studies about ABT-751 and fever is not a side effect - all of the fevers reported on this drug are from unrelated sources. So, it's not the drug. They decided to give Katie a dose of IV antibiotics, so our quick trip lasted three hours. By the time she got the antibiotics, her fever had climbed a little higher, but not as high as she usually can get (over 104 degrees). She got a little Tylenol, we ate a quick lunch, and she has been snoozing ever since.

We had planned on some fun today, but it looks like we will chill out here at the Inn. Katie's not up to much, and I don't want to push her. The weather has drastically cooled, and according to Katie standards, we will freeze to death if we venture outside. It is in the upper 50's here - gorgeous sunshine but cool. I laughed at her and told her that in Yankee land we would still be wearing shorts! The cooler weather plus her fever has really chilled her to the bone.

Katie will get another dose of IV antibiotics tomorrow and we'll see how she feels then - maybe we can get some fun in somewhere. We don't have to be back at the clinic until Monday morning.

Take care everyone.

Love, Michele

Thursday, October 12, 2006 12:41 AM CDT

Hi, everyone.

It is the middle of the day on Thursday, and we are on a little break back at the Children's Inn. Katie is sitting next to me playing on another computer. Yesterday was the first day of her new chemo - ABT-751. I think all the anticipation and anxiety made for a long day.

We got over to the NIH at about 9:30 a.m., and Katie took her first dose at 10:05 a.m. She had blood work before she took her chemo. Katie was very, very quiet and wouldn't speak to anyone. The nurse giving her the chemo had special gloves on and wouldn't let Katie hold the pill, because it is a hazardous chemical. That kind of freaked us out. No one can touch this stuff, yet Katie is swallowing it - yeesh.

Her quiet mood didn't improve. We spent the next three hours in the playroom because Katie had to have blood work at 11:05, 1:05, 4:05 and 8:05. We stayed until the 1:00 p.m. dose, then we left. We were both a little stir crazy, so we got in the car and headed into downtown Bethesda. We parked and found a McDonald's of all places. Katie still had only spoken about two words to me all day. After lunch, I wanted to explore a little bit, but Katie needed a nap. When we got back to the Inn, I hugged her and realized she felt very very warm. I took her temp and it was 101.4, and she was complaining about back pain. So, while she slept, I worried.

An hour later we were back at the NIH for the 4:00 p.m. blood work. When we walked in, I couldn't find anyone in the Day Hospital, so I walked around to the inpatient part and told the secretary who we were and that we were looking for our nurse. She said to me, "Is she a patient?" And before you know it, out popped from my mouth, "No, we walked in off the street to see if you could draw my child's blood." I'm sorry, Mom, I just was about as rude as possible. I was so worried we would have to go inpatient, in a place we don't know, and that Katie wouldn't be able to get her chemo....The secretary was rude right back and finally, I had to walk away. I was stressed, and it showed. Sometimes I keep it together, sometimes I don't.

Katie's temp at 4:00 p.m. was normal. She was checked out head to toe by one of her doctors (he is from Spartanburg - how cool is that!) and she was fine. One of the kids staying at the Inn was hanging out with us, and he managed to get Katie to laugh and talk for the first time all day. They eventually got in trouble for rolling around on those stools that doctors use. I could have cared less because she was acting like Katie for the first time all day.

We got back to the Inn, ran into some more friends, and ate dinner together. We were sitting around, shooting the breeze, laughing at me for being rude, and just sharing the woe is me tales about our children and families. The kids were joining in and it was so awesome to laugh. When the 8:00 p.m. draw came, our friends walked with us so I wouldn't be rude to anyone else. Whoops - I said walked - oh, no - we don't walk - we call for the shuttle every time now!

So, we are back to what are these fevers that seem to come and go? The only explanation I can come up with is tumor fever. I just so hope that is not it. The doctors here have scheduled Katie for an MRI on both of her legs for Monday, so hopefully we may have more answers.

Today, we have the same blood work schedule as yesterday. Katie is quiet, but not as bad as yesterday. Her tummy hurts just a little bit, but there has been no nausea at all. This morning's dose was a liquid - she tested the suspension so that small children can eventually take this drug. We found out she is only the third child to test this liquid on this trial here at NIH. She did great, and I was so proud of her being a trailblazer.

On another note, Erika has done pretty well since we have been gone. Mike went to Open House the other night at McLaurin, and she is getting rave reviews from her teachers. She is working hard, and doing well. We are so proud of her. Mike read an essay that she wants to grow up to be a teacher or a librarian. For a child that struggles so hard to learn to read, that really made me happy. She's sad at night when I talk to her because she misses us, but she has been trying to be a good girl.

I'll try to update tomorrow...take care, everyone.

Love, Michele

Tuesday, October 10, 2006 7:05 PM CDT

Hi, everyone. Today we met with the medical team and enrolled in a Phase I Clinical Trial. THis clinical trial opened up in 2004, and is practically a Phase II. A phase I trial is when the research team finds some promise with a new drug, and it tests out dosage and toxicity. Phase II's are more advanced and show more promise. The Phase II of ABT-751 is in the works, but right now, it is still a phase I.

Katie was in a pretty good mood all day, but she got a little tired of all the medical talk. I was really impressed by how involved they made Katie become in the screening process, and how sensitive they were to her concerns. We had to fill out a quality of life survey (each of us) and I was surprised to see that Katie, while not anxious or depressed, was very worried about what will happen to her. As strong as she is, I know she understands what she is up against.

This was another one of those momentous days for our family. Ten years ago, today, Katie moved in with Mike and me. This is our "gotcha" day - something we celebrate each year with both girls (Erika's is May 17th). Ten years ago, DSS "surprised" us with the news that Katie was moving in...we had actually found out two days earlier when Monika (thank goodness) gave us a heads up. We still have a picture in our house of the day we brought Katie home. It was an emotional day for everyone, especially Monika. Monika gave Katie the best start in the world, and she continues to love Katie as if she were her own.

I was emotional today thinking about how 10 years later, Katie is enrolling in a clinical trial that may be a benefit to her, and may not - but may help other children in ways we probably will never know. Some of the testing she will go through in the next few days will not benefit her a bit. It only goes to helping the drug company and the research team. One thing she is doing is helping formulate a liquid type of her chemo drug, so that even small children can take it. She hates liquids now (now that she learned to take pills!) but I think she was really intrigued that she could give back this way. My mind was on the guinea pig part and how I could subject her to this...it won't hurt her, so I justified it a little bit more.

We've met a few families while we are here, and Katie made one good friend right away. They are leaving tomorrow, though. It's great to see her just be a kid.

I have to tell a funny story. The Children's Inn is only about half a block from the clinical center. It is up hill, though. Katie found out that there was a shuttle bus, and insisted that we take it to and from the center. It took longer to go on the bus than it did to walk! When we walked out of the center to come back to the Inn, there was no shuttle. But Princess was going to wait! I told her tough luck, we could walk back because, heck, we could spit on the Inn from where we were standing. That did not suit her. Oh, well. I needed her to get a little bit of exercise!

I need to get back to her and relax a little bit. It's been a long day. I'll try to update tomorrow. Take care, everyone.

Love, Michele

Monday, October 9, 2006 6:40 PM CDT

Hi, everyone. We made it to Bethesda pretty easily - the traffic was heavy around DC, but it only delayed us about half an hour. We haven't eaten dinner yet, because Katie has already found an activity to do in the library (treasure maps). Our room at the Children's Inn is great, and it seems like their whole goal is to make us feel comfortable, which is wonderful.

Our clinic in South Carolina called today - the spots on Katie's legs are NOT lighting up on the MIBG scan - meaning that these lesions are probably not neuroblastoma. Who knows what they are...typical Katie for you. Also, one of our doctors met with Dr. Cohn (our Chicago connection) who thinks that no matter what, Katie is in the right place. We can do other treatments down the road, no problem. I feel so much better.

Our appointment is at 9:00 a.m. tomorrow, so I need to get Katie ready for bed....with so many things to do around here, it will be difficult.

Take care!

Love, Michele

Sunday, October 8, 2006 9:32 PM CDT

Today was a momentous day in the Krize household. Are you ready for this? Today, Katie washed her hair for the first time in seven months! Yep, she is growing a beautiful head of hair. Right now, it is straight and completely laying against her head, but it is gorgeous. She laughed out loud when I opened the shampoo! It was so fun.

We had a quiet weekend, and never did find out what was causing that fever last week. Her chest x-ray was wonderful on Thursday - not perfect, but vastly improved over two weeks ago. A CT scan of her sinuses was great,too. The fever may be tumor fever - she had it when she was first diagnosed. The cancer cells are foreign to her body, so her body colonizes white blood cells and runs a fever as if it were an infection. If only cancer could be killed that way...anyway, she continues to be without pain on those tumor sites in her legs, and she has a great attitude.

Katie spent a little bit of the day shopping with Erika and me on Saturday, but asked to go home before we went to get groceries, and then she chilled out the rest of the day. Her energy is still not that great. We had to miss Chris & Sarah's wedding - sorry, you two - congratulations! But, we couldn't risk her getting sick again, or getting worse. Today was the first day in weeks she had some energy.

Erika has been so, so good at school and at home. I don't know if she has turned a corner, or if this is just a lull in the storm with her, but if she is this good for Mike while I'm gone, it will be wonderful.

Tomorrow we head to the National Institute of Health in Bethesda, Maryland. We will be staying at the Children's Inn right beside the NIH - within walking distance of the pediatric cancer clinic. You can take a virtual tour of the Children's Inn at the link listed below. At the contact page listed below, there is even a way to e-mail us. I understand that there is a computer room and hopefully I'll be able to update Katie's website while we are there.

We still have no results from some of the other tests last week, but we'll fill you in when we can. Take care.

Love, Michele

Thursday, October 5, 2006 5:07 AM CDT

Yesterday's scan went fine - we don't have any results yet. The scan is repeated at 24 and 48 hours, and I'm not sure if they are read all together or not. The scan started late in the afternoon, and after running a few errands, we ended up at home at 8:15 p.m. Katie slept all the way home, didn't barely eat anything all day, and was very quiet. She went to bed immediately after we got home.

At about 10:15 p.m., we went to bed as well. Mike went in to kiss Katie good night, and he yelled to me to get the thermometer. Not a good sign. Her temp was 102 degrees, so we called her oncologists and ended up at the McLeod ER.

As much as I get annoyed with the lab there, at the ER, we were treated like gold. They got us a room immediately, a doctor saw us right away, and Katie got a dose of antibiotics. We got home at 1:30 a.m., something I consider a minor miracle for an ER. Her chest x-ray was good, so we are worried about another line infection.

It is about 6:00 a.m., and I'm about to go get a shower and get Erika ready for school, and Katie and I are headed back to Columbia for an echocardiogram, x-rays on her legs, and day 2 of the MIBG scan. God bless caffeine.

Take care everyone.

Love, Michele

Tuesday, October 3, 2006 7:15 PM CDT

Hi, everyone. Thank you, thank you, thank you for your e-mails, guestbook entries, phone calls, and prayers. We got through the day, and it was another beautiful one here in South Carolina. Katie had a very quiet day - she slept in a recliner in my office for most of it, and has been resting here at home this evening, too.

The clinic called with some good news - Katie's bone marrow from yesterday is negative for cancer cells after being examined at Richland Memorial. They test 1 in 100,000 cells for cancer. The sample has been sent to Children's Hospital of Los Angeles to be tested at the molecular level (1 in 1 million cells), but we won't have those results for awhile.

Tomorrow we will go to Columbia for another scan - this one is specific for her cancer. It is just like a bone scan, but with a different radioactive dye. This dye only lights up with neuroblastoma cells. If her legs light up, that will mean these lesions are definitely neuroblastoma. Here's to no lighting up!

Take care, everyone.

Love, Michele

Monday, October 2, 2006 8:46 PM CDT

Katie's bone marrow biopsy and aspirate went very well today. Katie got her wish and Dr. Laura had the honors of drilling into Katie's hips. She did a great job, and we got to have a long visit with her. Katie is in a lot of pain. It is difficult for her to move very easily, so she is going to stay home tomorrow (well, she'll probably be at my office). Her blood counts were great today, and during her physical, one of her other oncologists told us that she looks great.

I was waiting and waiting to hear the results of the scans last week, and now I know why they saved it for last - and it wasn't because it was the best. Katie's MRI was good - no progression, and the arm looks really nice. However, there are three new tumors in her legs. To say we were shocked is an understatement. Dr. Ron had all three of us looking at the scan on his computer and there are spots on her lower left leg (two of them - one by her ankle and one by her knee), and one on her upper right leg. I have welled up a little bit every time I think about this, but I haven't had the good cry. I'm afraid if I start, I won't stop.

This is really bad news. It means the topotecan/cytoxan is no longer effective. Good thing we are switching gears anyway! It made us all take a step back to re-evaluate where we are going, and believe it or not, we are still in the right direction. ABT-751, the new chemo available in Washington, is the least likely of all therapies to impact Katie's quality of life. NONE OF THE ALTERNATIVE THERAPIES ARE ANY MORE EFFECTIVE THAN THE OTHERS. I was seriously questioning our motives for trying the ABT-751, as in...are we taking the easy way out...but really, it is all one big question mark. Katie will be scanned again in 6 weeks, and in the meantime, she'll have two rounds of ABT-751 under her belt, and if it keeps the new tumors stable, we'll continue to utilize that therapy. If there are new tumors, or the lesions in her legs start to grow larger, then we may switch to something else.

The good news, if there is any, is that now Katie is eligible for a lot of other therapies. Like I said, none of them are more effective than the others, lots of them are extraordinarily painful, but we do have other options. It's not time to stand back.

After the bone marrows, when Mike and I felt like we landed back in surreal-land, we went out to lunch to the wonderful Harper's in Columbia, and ate outside in the gorgeous sunshine. It was so nice. Katie was hurting, but happy to be out of the hospital. She had seen her music therapist at the hospital, who has convinced her that her future is as a guitar player, so we went to a local music shop where they hooked us up with a beautiful starter guitar, case, tuner and picks. And I mean hooked us up - Pecknel's works with a bunch of kids from our cancer clinic and we got a nice discount.

So, if any of my Florence friends knows someone who teaches guitar, please let me know. It would be a great distraction in the coming months. Katie is completely asymptomatic with these new tumors (she has no pain whatsoever) and I think she would enjoy lessons.

Take care everyone.

Love, Michele

Sunday, October 1, 2006 12:45 AM CDT

Hi, everyone. Things are fine here. Katie has good energy, she's been eating ok, and her pain is really manageable (she only has pain when I touch her incision sight like when she had a shower today). Tomorrow is her bone marrow biopsy and aspirate.

It is gorgeous outside today, and it was beautiful outside yesterday. I may have complained about our home renovations, but the entire weekend we have had the air conditioning off and our new windows wide open and it is wonderful. I'm glad it isn't dark and gloomy. Because that is what this day represents to me...TODAY IS THE SEVENTH ANNIVERSARY OF KATIE'S ORIGINAL DIAGNOSIS OF CANCER.

Mike and I woke up this morning talking about that horrific day. We talked about how the oncologist told us it was definitely malignant and my husband asking, "Is that bad?" Then, when I stepped outside to use my cell phone to call our parents, Mike tried to hug me and I screamed at him that I hated him, I didn't want him, and that it was all his fault. We had an emergency meeting with the clinic's psychologist who talked me through my feelings at that moment and we went back to see Katie. She had thrown up all over herself during her first CAT scan (after drinking 24 ounces of mango juice, for goodness sake - no wonder we don't like CAT scan), and who was in complete agony with the pain from the bone metastases and the cancer rampant in her body.

I don't remember much of the rest of that day. I think my parents came that day, and on Monday we started more testing, but I'm not sure. My next clear memories are of weeks later, when Katie started losing her hair. It is really weird. This website wasn't started until December 1999, so I'm kind of missing a few months there.

We vowed that awful, awful day to find something to be happy about each day after that. It was hard sometimes. I had quit law school then, and one of the only blessings we could come up with was "Mommy didn't have to read for Tax class, and Mommy didn't have to go to Tax class." But we did it. We found a blessing in each day. Eventually, the blessings outweighed the hard parts, and we got on with our lives.

Our daughter has been a cancer survivor for more time than she has not in her life. That's saying something. That's saying a lot. Yet, she is just a normal kid who wants normal things. And we all still refuse to let neuroblastoma define our lives.

I hope you have all enjoyed this weekend. I know we have. And here's to seven more years, then seven more years, etc., etc.!

Love, Michele

Thursday, September 28, 2006 10:09 PM CDT

Hi, everyone. Today was scan day, and Katie had a good day, but Mommy did not. Katie slept through her MRI and her bone scan...if anyone ever had an MRI that is quite an accomplishment, given how loud it was. I tried to sleep but I couldn't with all the noise going on. She had an appointment with her oncologist, too, who told us her lungs sound so much better than last week, and that she looks great. We have no results from the tests today yet. One thing I did notice is that she lost 10 pounds in the past two weeks. Not great. But she doesn't look bad at all, in fact, she looks wonderful.

The reason I had a bad day was just our experience at the hospital. After almost 7 years, I feel like we should be pros, that people should treat us right, and that things should go smoothly because we know what to expect - WRONG. We had to go to admissions three times because everyone claimed things were messed up with our account (they weren't), we were delayed a long time because of this (not our fault), then in MRI, I was told that they could not give Katie heparin in her central line. We must keep the line filled with heparin (a blood thinner) so that a clot doesn't develop. If a clot develops, it could break off and hurt her, or it might lead to another surgery to remove that line and add a new one - both possibilities we don't want to consider.

But - I was told that the "new" hospital policy was not to flush with heparin. Please, God, tell me who makes these policies? Let's make sure a 12 year old cancer patient develops a blood clot? Huh? It would have been one thing if they had called me ahead of time, and asked me to bring heparin, but of course that didn't happen. I was also told that only a nurse could give heparin to Katie. Well, I give her heparin every day. Where is our discount from hospital and doctor charges for all the work I do?

Anyway, I rushed Katie to bone scan because we were very very late, then ran to the cancer clinic and our wonderful nurses gave me a syringe full of heparin to get into Katie. They were livid, and right away, started making phone calls. It's that kind of thing that makes these days exhausting. In the meantime, my little girl who still is dealing with pain from a large incision in her back, laid completely still through two scans, and never complained. She didn't even complain when we couldn't go to lunch because of all the admissions snafus and because MRI was so late. We ate lunch at 3:00 p.m. Ridiculous. We got home at 6:45 p.m. and luckily, John David and Debbie brought dinner so that I didn't have to deal with that. Thanks so much you two - it was very yummy, although the girls wanted to START with the chocolate cake!

On Monday, Katie will have a bone marrow aspirate, then on Wednesday, Thursday, and Friday more scans and an echocardiogram. We are all set to go to Washington, DC on October 9th.

Take care everyone.

Love, Michele

Sunday, September 24, 2006 9:35 PM CDT

Hi, everyone.

We had a relatively quiet weekend. Katie was pretty reserved, but she asked to go to Mr. Mark's Fun Park just to play the arcade games and she had a great time. Erika had a WONDERFUL day today - she was so good in church, grocery shopping, and at the library, then she ate a great dinner and went to bed without arguing - it was the best.

On Friday, we got the call from Washington about our trip up there. Katie and I are leaving on Monday, October 9th, and we will be gone about 8 days. Our clinic appointment is the 10th, then she starts the new chemo on the 11th...she will be followed up closely with blood work and other tests for that first week. After that, we will go to Washington every 21 days but just for a day or two. All the blood work and other tests will be done in South Carolina. We are very excited about this phase of treatment - so excited, that I just want to rush through these next tests so we can get there! Then, I remind myself that these tests could show that Katie's cancer has progressed (although there are no signs that it has), and it makes me nervous. ABT-751 is no magic bullet - nothing is with relapsed neuroblastoma - but I am hoping that Katie has good results just like other children have.

Tomorrow, she'll go to school for the first time in two weeks - it seems like a lifetime ago that we were in normal mode. I hope she does all right with that incision - but she is so strong, I don't know why I worry.

Take care, everyone.

Love, Michele

Thursday, September 21, 2006 9:18 PM CDT

Katie has had two good, but quiet, days. Her pain is still there, and her shoulder is very tender. It makes moving her arm pretty difficult. She tells me she can't sleep that well, but the pain meds help. She cried tonight when I changed the dressing over the chest tube site, but it was over the bandaid. Katie can't stand to have bandaids removed, and she is no fan of the quick tear-it-off method. So, I have to use adhesive remover and go very slowly. It still was over quickly, but it made us all sad for her to hurt again.

Two days ago, another child we have grown to know passed away from neuroblastoma. Christi and Katie share the same warrior spirit. Christi never got the six year break that Katie got - she was on therapy for four straight years. Christi endured some experimental treatments that Katie is going to take advantage of, and for that, we will be forever grateful - just as I hope some other child will benefit when Katie is successful with experimental treatments. Christi's parents, Angela and Shayne, were a source of comfort and information to us - even two weeks ago when Christi was in horrific pain with rampant tumors, they managed to send us an e-mail about our upcoming treatment in Washington, DC (Christi spent 15 months on ABT-751). They always called their family and friends a "team." I know what they mean...we couldn't bear this without all of you, your prayers, your support. God bless Christi's team - you have our heartfelt sympathy....

I am hoping we have a quiet weekend and Katie will be able to go to school on Monday. Next Thursday she will be out all day with scans. Take care everyone.

Love, Michele

Tuesday, September 19, 2006 2:32 PM CDT

WE ARE HOME!

Katie and I were let out of jail today - it was awesome. Dr. Atkins (the surgeon) was not too keen on the idea but Dr. McRedmond (the oncologist) probably talked him into it. Dr. McRedmond came into the room when Katie was taking a little nap on the couch and told me that it was time to go home. I hugged him and Katie woke up and said, "Just Mommy?" in this pitiful little voice. Everyone in the room laughed and he came over and said, "No, little one, you are going with her!" Katie finally smiled - it was great to see.

The morphine was cut back yesterday and Katie was awake all day. She had some breathing treatments and she walked a little bit. We both had bad attitudes, mostly because all we kept hearing was "we don't know what is wrong with her." Katie was so grumpy, but I'm sure it was the combination of morphine, and being cooped up in the hospital, and being in pain. Her incision from the lung biopsy is three inches long right on her shoulder, and the chest tube was right beneath that.

We still have no idea what is wrong with Katie's lungs - nothing has grown in the cultures, the cells don't look like a fungus, TB, or cancer....it's a mystery. The only theory that fits is that the "raisins" are septic embolli -just septic cells that got away from the original infection and took up residence in Katie's lungs. Since she has been on three different antibiotics, each of which target one of the three infections that were identified, the other theory is that she should be fine.

We are changing course now, a little bit. Because Katie has had such a fantastic response to her 7 rounds of topotecan/cytoxan, we are done with that chemo. No one wants to knock her down again to end up with another pneumonia or whatever. So, next week we do more scans and the week after that as well (and also a bone marrow aspirate) and we are headed to Bethesda, Maryland to the National Cancer Institute for the chemo clinical trial there (the drug is called ABT-751).

We are all overwhelmed and tired. It has been a long 9 days. Erika is so happy we are home, and maybe we can get back into our lives. I'm making Katie stay home for the next few days (she can't lift or pull her backpack anyway because of her incisions on her right side), and to heal those lungs as much as possible. Nanny and Aunt Sandy are headed back to Florida - thank you so much for taking care of the little one!

Take care everyone!

Love, Michele

Sunday, September 17, 2006 8:36 PM CDT

Katie had her chest tube removed today. She spent the day snoozing because she took some anxiety meds. We still don't know what is in her lungs. Mike is typing this so the update will be short.

The Krize Family

Saturday, September 16, 2006 4:32 PM CDT

It's about 5:30 p.m. on Saturday. Katie spent much of the day snoozing, and she got up to go the bathroom. She is still in a lot of pain, but she is doing better. The chest tube comes out tomorrow, but the best news is....

RIGHT AT THIS MOMENT SHE IS HEADED BACK TO THE CANCER CENTER, ROOM 7524! Praise the Lord!

No more PICU! Yahoo. The nurses there were wonderful, and we couldn't have asked for anything better, but there is no place like home. Only a cancer mom can consider the cancer center home, but hey....

No more news one what is in her lungs, but this is a step in the right direction!

I'll update when I know more...

Love, Michele

Saturday, September 16, 2006 9:26 AM CDT

It's about 10:30 a.m. on Saturday morning. Katie is improving. Apparently, after I left last night, Katie finally was able to go to the bathroom. She went twice more after that, so she has avoided a catheter. Mike stayed until 7:00 a.m., then joined me for a little nap over in her cancer center room. (We cannot be in the PICU from 7-9, a.m. and p.m. each day because of rounds).

Katie is off oxygen and her oxygen saturation is acceptable - not perfect, but acceptable. Today, we are working on fluid intake, and preventing more pneumonia. She is still in a lot of pain, and she is pushing her morphine button regularly.

Right now she is pretty grumpy because of the pain, but she is talking to us. Katie is refusing to smile - very much NOT like her, but I think she is coming around. I'll try to update as often as I can....

Love, Michele

Saturday, September 16, 2006 0:51 AM CDT

It is about 2:00 a.m. on Saturday morning. I've been with Katie since 9:00 p.m., and she is struggling a little bit. She has yet to go to the bathroom since we left the recovery room, and we are all getting a little concerned about that. It's not for lack of trying, though. She sat on a bedpan for two hours (ick, how awful), then insisted on getting up and trying to use a bedside potty. She is hooked up to everything imaginable - her central line, an arterial line in her arm, pulse/oxygen monitors, heart monitor, blood pressure cuff, chest tube - but with the help of two nurses she got out of bed and onto that chair. She sat there for another hour and still couldn't go to the bathroom.

So, we wait - she is now sound asleep. She gets morphine through a PCA pump - she gets to control how much pain medicine she gets and the nurses tell me that she is being conservative. She must have a very high pain thresshold. Mike will be here soon to relieve me - I stepped out to use the bathroom myself, and to write this update to stay awake!

By the way, for you old timers, the PICU has revamped its family waiting room and it is much, much better. Seven years ago it was a nightmare. I just can't tear myself away from Katie's bedside to use it. Mike is snoozing back at the cancer center in Katie's room - they really do treat us like gold. I'll be hitting that bed soon.

Take care everyone.

Love, Michele

Friday, September 15, 2006 4:16 PM CDT

It's been a long day...Katie right at this moment is being checked into PICU. Surgery was delayed for two hours, and she didn't go back in until 1:00 p.m. The morning was fun though - she was in a great mood, and we laughed and played. It was not somber in our room today! Katie begged everyone that came in our room (respiratory therapist, volunteers, nurses, doctors) to help her break out of the hospital and take her home. When we got word that they were coming to take us to surgery, she hid in her closet. Hysterical!

Surgery took 2 1/2 hours - way longer than we thought. The surgeon met with us afterward and we reviewed everything. So far, we still have no idea what is in her lungs. It is everywhere, though, and her surgeon said he is leaning more toward a type of infection, rather than fungus or cancer. However, he still can't rule anything out. Pathology has already looked at a slide of the biopsy and they are also leaning toward an infection. The surgeon mentioned it could be ANYTHING - even tuberculosis. Quite bizarre, but that is our Katie for you.

We were really hoping that she could go back to the cancer center to our regular room, but her breathing isn't as deep as the surgeon would like, so she is being admitted to pediatric ICU - room 923. There are no visitors in PICU, so please just send messages via the website. I just read over them and they made me cry. Thank you all so much.

I was in the bathroom today in the surgery waiting area, and I found a card on the floor with the best poem. Here it is:

My precious child,
You are no ordinary person,
Of all the people,
In all the countries,
In all the world;
Who have ever lived,
Or ever will live-
There is none like you.

All the wealth
That has been discovered-
All the wealth
That lies undiscovered -
Combined,
Would not even scrape together
A down payment
Toward equaling your value
To Me.

You are a priceless treasure
And it was My joy
To hang on the cross
Just so I could,
One day,
Enbrace you.

Love, Jesus

It's hard for me sometimes to relate to all of you how much we rely on God, but we do...He carried us all today, that is for sure.

We'll try to update when we know something!

Mom and Aunt Sandy are here to take care of Erika, so Mike and I are going to stay in Columbia this weekend to see Katie through this.

Take care everyone.

Love, Michele

Thursday, September 14, 2006 6:15 PM CDT

It has been a long week. Katie was very, very ill during Monday and Tuesday. Monday evening Katie got a blood transfusion and that seemed to fix her dehydration and blood pressure issues. However, Tuesday afternoon was one of the scariest times we have ever had. Katie's fever spiked to 104 degrees, she was struggling for every breath, and I was freaking out. She got a little oxygen, a lot of Tylenol and Ibuprofin, and hasn't had a fever since.

The official diagnoses (there are more than one) are: pneumonia, sinus infection, and a bacterial infection in her central line. She is on three different antibiotics for those. The problem now is her pain - her back is killing her, and we think it is because of the pneumonia. Every cough causes her agony - so much so that the other day she got codeine to help ease it. We consulted with a pulmonologist who suggested breathing treatments and they helped. He also wanted a CAT scan of her chest to really see what was going on.

That's when things really got interesting. The CAT scan shows oatmeal lungs with an assortment of raisins - not good. No one knows what the raisins are - they are lung lesions, and they could be a fungal infection, more neuroblastoma, or even a secondary cancer. Most everyone (surgeon and oncologist) are thinking that it is a fungal infection - but in typical Katie fashion, she keeps feeling and looking better. If it was a fungus, she would probably not be feeling better. It is quite bizarre.

So, for diagnosis purposes, she will be undergoing a lung biopsy in the morning. And this is not just a go down the throat and get a sample - she is having a thoracotemy (forgive my spelling) - a full sample of her lung. Dr. Atkins will go in through her back, through her muscles, in between her ribs (and she told him he had better not break her rib!) and get a sample of one of those lesions. She will end up on a chest tube for several days, probably in PICU (pediatric ICU). Mike and I are floored, and scared. I don't know how else to put it.

If it is a fungus, then Katie's treatment regimen will be put on hold - and it could be quite awhile. Neuroblastoma waits for nothing, so holding chemo and other treatment is another scary thought. We just don't know what to think right now. Mike and I are going to be with her tomorrow, and I don't know when I can update, but I'll try. Just check back on her website and we'll do what we can.

In the meantime, we really need your prayers. Katie continues to be in a good mood, and when she is not coughing or trying to do her deep breathing, she is not in pain. She is amazing.

Take care everyone.

Love, Michele

Monday, September 11, 2006 11:48 AM CDT

Hi, everyone. I was going to update Katie's website and send out an e-mail this evening, as we have been very busy, but plans changed...

This weekend, we went to our cancer clinic's Family Weekend at White Oak Convention Center in Winnsboro, SC. There were about a dozen families there, all in the same situation we are in...it was a lot of fun. We played, relaxed, ate, and got lots of goodies. Katie and Erika had a blast, and didn't want to come home. Katie had had the sniffles all last week, and started running a low grade temp on Thursday evening. But, because her counts were good (well, most of them), and her fever never got over the "threshold" of 101 degrees, we were allowed to go to Family Weekend. Katie's hemoglobin had improved slightly during the week, and since she had such great energy, her doctors didn't believe she would need a blood transfusion before chemo started today.

Well, Katie woke up this morning with a temperature of 101.7 and by the time we got to the clinic today it was 102.9. She is dehydrated, and her hemoglobin is really low (even lower than last week). Her white count is high - probably because she is fighting some bug (whether viral or bacterial). So, she got some fluids and a dose of antibiotic and we were going to go home and come back tomorrow for blood. Unfortunately, after getting the antiobiotic, her blood pressure crashed - and I mean crashed. I haven't felt that kick in the stomach since Katie relapsed - the lowest was 98/33. They have been taking her blood pressure every 15 minutes, and just now it was 118/40. Scary. So, we are staying the night at Palmetto Richland! She has been sound asleep for an hour and a half now, and I think her fever is down. Cultures have been done, and she is in the right place. Her cough from pneumonia is still with her, and her sniffles are there, so hopefully it is just something she needs to get over.

I'll try to update as I can...please send a prayer up to identify this bug and figure out how to defeat so we can get about the business of killing cancer cells! Take care everyone.

Love, Michele

Monday, September 4, 2006 6:49 PM CDT

This past week has been smooth sailing - Katie has felt great, looked even better, and this is all with a very low hemoglobin. Her energy still is better than mine. Maybe I'd better get a blood transfusion for her! After this short school week, Katie will start her last round of regular chemo, as long as her scans turn out all right. We'll probably do those at the end of September, then head to Washington, DC in the middle of October. We spent two days and one night in Helen, GA to get away a little bit - the cool of the mountains was what we were looking for, and what we found! We decided to go on the spur of the moment Friday when we found out that Katie's blood counts were great, and we didn't have to be on house arrest. We did so many fun things, but one was significant - we hiked up to see Anna Ruby Falls. It wasn't a bad hike - straight uphill for only half a mile. Still, Katie did it without complaining and didn't even take a nap on the way home.

Have a good week, everyone.

Love, Michele

Saturday, August 26, 2006 10:47 AM CDT

Hi, everyone. Katie had a good week in chemo - she got progressively more tired each day, and in fact slept almost the entire time we were in clinic on Friday. Still, she had no vomiting, only a little nausea, and we had some good times this week. She worked on some homework, played games, watched TV, and played with other kids at the clinic.

Unfortunately, I had a rough day Thursday. When we first got to the clinic, Katie was very happily surprised by one of her best friends - a little girl named Charlotte who had leukemia back when Katie was going through treatment. Charlotte also has a twin named Caroline. The three girls were absolutely inseparable at Camp Kemo for five years. They gave each other a big hug, and it was great for me to see Charlotte's parents too. As the day went on, though, I discovered that it was the day at the clnic for the children who were being followed by the late effects clinic - in other words, they were only being examined to help with any long-term problems they may be having from treatment years and years ago. It was the clinic we were supposed to be in three weeks after Katie relapsed. It was so awesome to see these teenagers, all grown up and cancer free, but it really hit me hard that we were back in the fight. That should have been Katie out there getting hugs and squeals from the doctors and nurses about how big she had grown, and catching up on busy lives. Instead, our nurse was saying, "Here's you next dose of chemo..." Well, I lost it. Our social worker came up to me just to ask how things were going and I burst into tears. Katie doesn't deserve to be going through this again.

So, while I was having this giant pity party for us, I got to talking to another family there - child also relapsed after 6 years (a different although just as awful type of cancer), mother divorced and can't work because their chemo schedule is insane and they live 2 hours away from the clinic, father sporadically paying child support, and on and on....Then, I got home and my mother called and told me that my cousin, who is 40 years old just like me with two boys - one in college and one in 8th grade, had been killed in a terrible work place accident. So, pity party for us over....

Then on Friday, the clinic had a kick off party for September - September each year is National Childhood Cancer Awareness Month. We got the chance to go, and we were surrounded by the children's art work - Katie's was right there! We heard from parents like us, parents who have lost their children to cancer, and one of Katie's doctors. The parent who had arranged the whole kick-off party gave us all a list...and it was titled, "I refuse to let cancer...." and then she filled in the blanks. It was awesome. If you have any gold ribbon laying around, please shape it into a bow - I'm sure you all know about the pink breast cancer symbol, but a gold ribbon is the symbol for childhood cancer.

On Tuesday I get to speak to the first year medical students at USC about the impact of illness on the family. Hopefully I'll get throught it without too many tears! Katie goes back to school on Monday without skipping a beat. The parent yesterday spoke about looking for heroes, and with a cancer family, you never have to look far - Katie is my hero, and she showed again this week, and every day, that she refuses to let cancer define her life. Take care, everyone.

Love, Michele

Sunday, August 20, 2006 8:26 PM CDT

Tomorrow Katie starts round 7 of topotecan/cytoxan - the topless cyclone! I can't believe a week ago she was running a fever of 104 degrees (and higher), and had pneumonia. She is all finished with her antibiotics, and her blood work on Thursday was great. Katie went to school Wednesday, Thursday, and Friday and loved it. She even went to the back-to-school dance Friday night and had a blast. She called me after she was there about 20 minutes, and she said, "I'm having a really good time, Mom!" It was so cute. Mike and I got to take Erika out for dinner all by herself. We went to Schoolhouse BBQ (Myrtle, are you jealous?!)..it was awesome.

Saturday, Katie and I went to the eye doctor and we both got new glasses. Katie's eyes got a little worse (she has worn glasses since she was 4 years old), and she got some really neat glasses with transitions lenses - she always complains that she has no sunglasses. I got the worst news - I now need bifocals. I just can't believe it. I told my parents this evening that not only were they the parents of a 40 year old, but that that 40 year old now wears bifocals. Yeesh.

We had a pretty calm weekend, and a nice visit with Debbie, who drove all the way to Florence for grilled chicken! Hope you liked it....Here's to a good, calm week, and no nausea!

Love, Michele

Wednesday, August 16, 2006 8:34 PM CDT

Katie has had no fever since Monday evening and she went to school today! She called as soon as she got home, and told me that she had a really good day. Her cough is still there, and she gets out of breath pretty easily. This evening she even played with Garrett for the first time in forever, and it was so great to see her just be herself.

Erika's orientation for 2nd grade was last night, and she has a very nice teacher. They even have a class pet - a fly who won't leave the room. Kind of funny for my bug phobic little girl. Erika showed out tonight pretty badly, but I was kind of waiting for that. She needed to get back at me for being gone for three days. We have kissed and made up, so things are ok. Even Katie the other day admitted that she only "jokes" about wanting to give Erika away - the sisters love each other a lot.

Katie has blood work tomorrow at McLeod and then we will hopefully have a quiet weekend, then chemo next week. Thanks for all the prayers, everyone!

Love, Michele

Tuesday, August 15, 2006 11:38 AM CDT

It is Tuesday afternoon, and we are finally home from the hospital. It turns out that Katie has pneumonia - the doctors aren't sure it is viral or bacterial, but because her fever took so long to respond, it is most likely viral. Still, she is on two different antibiotics to attack whatever it is.

Last night, Katie's temp was 103.5, but overnight, it has steadily gone downward. If it stays down, she gets to go to school tomorrow. She is really hoping for that. She has been very, very worried about school. Chemo is still on target for Monday, August 21st, as long as her counts are high enough to start. All the Tylenol she has taken lately really makes a hit on her platelets.

She looks great, and feels so much better being at home in her favorite chair with the dogs curled up around her. We're going to take them for a short walk to get Katie's lungs working - she needs to be a little more active, and drink lots of fluids to keep fighting this pneumonia.

We are so glad to be home!

Love, Michele

Sunday, August 13, 2006 3:21 PM CDT

Hi, everyone.

School last week was GREAT. Both Katie and Erika had a wonderful time, and their excitement was so cool to watch.

However, Katie has been inpatient at Richland Memorial in Columbia since Saturday afternoon with raging fevers and a sore throat. We haven't pinned down exactly what is going on, but hope it is just a virus. Just this afternoon, she spiked another 104 degree fever.

I'll try to let you all know what is going on...so far, she is just very tired and very warm. Tylenol brings down the fever a little bit, but it spikes up again. Keep us in your prayers!

Love, Michele

Monday, August 7, 2006 9:05 PM CDT

Hi, everyone. Katie had a good week last week in chemo. She was with her daddy most of the week, as I had court and a convention in Hilton Head. I was able to be there Wednesday morning. I missed her so much, but she did really great. They stayed in Columbia for two nights and were entertained by friends, so everything was good. The weekend was a little slow, but Katie got to see one of her friends, so she was happy. Mom, Dad, Aunt Sandy, Johnny and Bear all took care of Erika and she had a great time as well.

This evening we went to Southside Middle School for orientation. Katie was scared to death about it, but made two new friends, and ran into an old friend while we were there - all three of the girls she talked to are in one or two classes with her, including her lunch period. Each teacher knew about Katie and treatment, and all promised to do whatever they could. They were informed by the school nurse I met during registration - I am already impressed!

At the end of last week, we found out that Katie will have scans again next week, and that she will have another bone marrow aspirate. So, she'll be able to get a week of school under her belt, then miss a week and a half. Sigh. But at least she gets to go to school. Erika is so over the moon about school starting that she can't sleep. She has literally had her back pack ready for two weeks. When I discipline her, she will look at me with those huge brown eyes and say, "A big second grader doesn't do that, do they, Momma?" She is trying!

School begins on Wednesday, August 9th - I don't know if I will cry or laugh - probably a little of both! That I am the parent of a middle-schooler is what is making me cry! Take care, everyone.

Love, Michele

Sunday, July 30, 2006 6:15 PM CDT

We have had a relatively quiet week. Katie has felt pretty good, and guess what - her hair is trying to grow back in! She has some pretty good fuzz going on - it looks straight and blonde, at least that is what we tell her!

I registered both girls for school this week. We finally decided that Katie would go to Southside Middle School, and not the IB program. We just didn't want to set her up for failure, or make her frustrated with school. She is in the enriched courses at Southside. I met with her new principal, nurse, guidance counselor and science teacher, and I left there feeling really good about things. She is nervous, but excited. Erika is over the moon about going back to school. She has bought all her school supplies, and they are packed in her backpack. She even pretended to go to school at 9:30 p.m. the other night - in her jammies. I'm sure our neighbors think we are crazy (no comments, Kelly & Rick!)

Tomorrow starts another round of chemo. Kate just told me that she would rather start school. Hmmm....this week will be Dad's duty because I have court Monday and Tuesday, then a lawyer convention the rest of the week. I will get to be with her on Wednesday. Mom, Dad, Aunt Sandy, Johnny and Bear are coming on Tuesday to hang out with Erika. If that doesn't make her feel special, then I don't know what will...

Take care, everyone.

Love, Michele

Sunday, July 23, 2006 6:54 PM CDT

We got back this afternoon from our family trip to Camp Debbie Lou in Latta, South Carolina. I can't even begin to tell you how much fun we had. The CDL staff and volunteers were amazing, and put on three days of fun, love and laughter (ok, that was their motto, but it was true!)

We got to camp on Thursday morning, and it felt like a hundred people came out to greet our truck - kind of funny. We got a quick tour of Beulah Land Plantation, and it looked like a lot of fun. There were go-carts, crafts, swimming, bumper boats, fishing, archery and horseback riding. The main lodge was gorgeous. There was a big dining room, and a huge living room where there were all kinds of animals on the wall, and around the lodge - the family is really into hunting! We met the other families - there were 5 families in all, with 12 children, and probably twice that in staff and volunteers. One of the children in the other families had neuroblastoma, but all of us had a ton to talk about.

On Thursday, we went swimming, and every time we hit the pool, the staff found other things for Katie to do - it was very kind. Katie really loved the fishing the most. The lake was stocked, so basically every time your hook hit the water, you caught a fish. She loved it. There was also scrapbooking and one of the staff was constantly taking pictures and printing them immediately, so both of the girls prepared a scrapbook from their experiences. It was such a neat remembrance. Both girls got awards - Katie was "Future Bass Master" and Erika was "Energizer Bunny."

There were way too many things to talk about...there was one injury in our family. I went with Katie to archery one day. She got tired of doing that, so we picked up a bat and ball and started to play baseball. I kept trying to convince Katie to use a real ball, but she just wanted to hit the plastic ball (thank goodness). Mr. Harold (one of the staff) was shagging balls deep in the outfield while he rode a gator (like a mini tractor), and Mike was midfield, and I was pitching. Katie kept hitting these incredible fly balls, but she kept warning me to stand back. After hitting maybe six in a row deep in the outfield, she hit a line drive - right into my left eye. It smacked into my sunglasses, popped out the lens, and took my breath away. I tried to stop crying, because I didn't want Katie to get scared, so I started to laugh. Mike was there, and so was the camp nurse (Sue), and we were all laughing hysterically, until I stood up and they could see what happened. Ice helped the swelling and as of today, there isn't much bruising, but I got a good one. I kept calling Katie "slugger" and she is convinced that she has to play softball now.

I could write story after story about our experience at Camp Debbie Lou. The Richardson family, their extended family, friends and volunteers were truly sent from God. And the other families were so cool - each child was special and unique, and everyone was a lot of fun. Oh, yeah - and the food was incredible, and the accomodations were the best. The parents got to eat at Abingdon Manor on Friday night, without the kids. Abingdon Manor is a 4 diamond restaurant/bed and breakfast in Latta, and it was very, very nice.

During our time at camp, Katie's counts hit a low as expected, but you couldn't tell. She had great energy even with low hemoglobin, and she never missed a beat. Her baldness was no big deal, and hearing her laugh was the best. Erika was totally psyched to be there, and we all dreaded leaving. And we are dreading getting back in our routine, but the time away did recharge our batteries.

Katie has another week off and then starts chemo again on Monday, July 31st. Here's to another good week!

Love, Michele

Sunday, July 16, 2006 11:29 AM CDT

Hi, everyone.

Katie had a good week in chemo and radiation. The presents continued every day in radiation, and Katie was sad that she finished her treatments. The treatments themselves are quick and painless, and the staff there are wonderful....they gave us pictures from when Katie was 5 years old and in radiation, and she has the same grin! Too cute.

Yesterday, Katie was pretty low-key. She had problems with nausea, but it was kept under control thanks to the wonder drug called Zofran. She ate and drank pretty well all day once the Zofran kicked in. Erika and I cleaned her room and bought new bedding, just like what I did for Katie, and she was so excited. Unfortunately, now when I punish her and tell her to go to her room, she is very excited!

This coming week we will have a normal week for the first part (work, YMCA), then on Friday we get to go to Camp Debbie Lou as a family in Latta. We have heard wonderful things about this camp - 4 days of wonderful food and lots of fun. We can't wait to get away a little bit.

We have a "new" plan - Katie is going to do 3 more rounds of this same chemo cocktail, and we are investigating a clinical trial that does not require measurable disease - it's a new drug by Abbott Labs called ABT-751, and it has given a lot of relapsed neuroblastoma patients months and months of stability, which is what we would love to have. The trial is in Chicago, Philadelphia, and DC, so we are looking into our options right now. We can't even start this until one month after she finishes the last round of chemo, so it will probably be sometime in October. It is a chemo drug, but designed to not be so harsh on the blood counts and hair loss, so hopefully Katie's hair would grow back, and her immune system would improve. Also, it is an oral medication, so she could take it at home.

Thanks as always for all the support and prayers.

Love, Michele

Tuesday, July 11, 2006 5:58 PM CDT

The past two days of chemo and radiation have been fine - no problems at all. Katie's blood counts were wonderful yesterday. It is actually nice being back in radiation oncology - the group of people there are very sweet, and even went out last night and bought Katie a bunch of surprises for each day of radiation. Julia, one of the techs, made up clues and rhymes for each prize. Oh, no - we aren't spoiled at all. The radiation has been cake - 30 seconds to each side of Katie's lower right arm and we are done. She'll have radiation every day this week and then be done with that.

We are driving back and forth because Erika has been having nuclear meltdown when I stay in Columbia, and we wanted to see how she would behave if we came home each night.

Yesterday, Katie got to start on her Candlelighter's Necklace. Candlelighters is a cancer charity, and they have developed a series of beads to represent each thing a child deals with in cancer treatment. There are green beads for chemo, cat beads representing CAT scan, purple beads for echocardiograms...there are beads for everything. Katie's necklace is very long already, and we haven't finished. One child we know of had a string of beads five feet long. Everyone comments on the necklace - it does look really cool.

Take care, everyone!

Love, Michele

Sunday, July 9, 2006 9:12 PM CDT

Everyone is home, safe and sound.

Katie and Erika had a great time at camp. Neither one of them wanted to come home. Several girls have already called the house to talk to Katie, and plans are already made for next year. I'm so glad they had fun. Mike had a good time in Pennsylvania, and I got a chance to catch my breath.

Tomorrow Katie will start round 5 of chemo, and she will also start radiation. It will most likely be a long day tomorrow. She looks and feels great, though. Her counselors at camp told me she had the most energy of all her group. This only a little more than a week after being released from the hospital with a bacterial infection in her blood. She ought to be on an Energizer Bunny commercial. The little one was the same way, but that is to be expected with her!

We'll let you know how chemo and radiation go! Hopefully it will be smooth sailing.

Take care.

Michele

Friday, June 30, 2006 6:08 PM CDT

Fridays always bring such interesting news!

This week, Katie had an MRI of her arm, and an MIBG scan. MIBG scans are done on neuroblastoma patients because they are very good indicators of neuroblastoma cells. MIBG is a type of radioactive dye that loves NB cells, and makes them light up and glow. We don't have the results of the MRI, but the MIBG DIDN'T GLOW! It was completely negative. Now, MIBG scans don't light up individual cells, but they do light up small clusters of cells. Katie's MIBG was negative - really, a miracle. God is good.

We can't do blood cultures until tomorrow for follow up on her infection, but with Katie's blood counts from Tuesday (awesome) and her negative MIBG scan, she is cleared to go to Camp Happy Days on Sunday. She will start her next round of chemo on July 10th.

Please don't take this wrong - we are absolutely THRILLED that Katie's MIBG scan is negative, but this is also terrifying news. This will preclude her from participating in any phase I or phase II clinical trial (both demand measurable disease). This fight is not over, it just means the neuroblastoma is hiding again, to rear its ugly head...well, we don't know when. We are going to follow through with radiation and two more rounds of chemo, then try to convince our doctors to try an experimental treatment off study. The good news is Katie is kicking neuroblastoma butt. She is amazing, an inspiration - and I don't need to tell you all that. We really don't have any idea what we have done to become parents to such an amazing little girl.

Those of you that know me well know that I hate to hear how much we have done for our girls - they have given us way more than we will ever be able to do for them. Katie has taught me more about enjoying life, facing obstacles, and just living than anything else I could ever do.

Have a wonderful weekend, everyone. After all this good news, our little nuclear family is separating for a week - the girls at camp, Mike in Pennsylvania, and me to catch up on work....and we all can acknowledge that life is good, and God has blessed us...

Love, Michele

Monday, June 26, 2006 5:36 PM CDT

Hi, everyone.

After the drama of last week, we have had a few relatively quiet days. Katie has been a little less energetic, but that is fine. She is still on her IV antibiotics, but we do that at home and it is no problem.

Tomorrow Katie will have an MRI of her arm, and an MIBG scan. That's the scan that is specialized to her cancer. We are hoping that the chemo has taken a real bite out of the tumor in her arm, and that there are no more tumors anywhere. Mike will be with her for those scans, as I have court.

On Wednesday and Thursday, Katie has to go back to the hospital for repeat MIBG scans (she is scanned once every day for three days for that one), then on Friday, she will go to have cultures drawn for her infection. If the scans are good, and her cultures are negative, she can go to Camp Happy Days. Erika is going no matter what - it starts on Sunday, July 2nd, and lasts until Saturday, July 8th. So, the prayer request is for kid fun, and not cancer treatment.

On another note, we are back to fighting with Tricare. One of the recommendations from the doctor in Chicago was that we "harvest" Katie's stem cells as soon as her bone marrow was clean - and that time is now. We may need stem cells in the future, then again, we may not. It is very helpful to have them for a rainy day. The stem cells from 6 years ago are probably not viable. Tricare's "policy" is to pay for a harvest at the time of re-infusion. I am sure the hospital performing the harvest loves that idea (that was sarcasm!) They won't pay for harvest or storage. Hmmm. We'll fight this too. I dealt with a new person at Tricare, but the previous nurse was on speakerphone and when I told the new one that our conversation wasn't over and we would fight this all the way, the previous nurse said something along the lines of - she means what she says. Good, I'm glad they know I mean business. We have met another family where Tricare paid for the harvest, and he has yet to use his stem cells, so there is precedent...and as a lawyer, I love precedent!

Take care everyone. We'll let you know what the scans say!

Love, Michele

Wednesday, June 21, 2006 9:04 PM CDT

Katie is home! Yeah! She made it home by dinner time, and I cooked, and we ate as a family. Then we had a huge thunderstorm, which I was actually looking forward to. Lately when there are storms, we sit in the living room and laugh and talk...it was wonderful - no TV, no computer. Charlotte curled up on Katie's lap and we teased each other and talked about the next few weeks coming up. After four days in the hospital, it was just what we needed.

Katie starts her IV antibiotics tomorrow at home, and she has been released to her "normal activities." Too bad the doctors don't have a clue what that is...Dr. Kevin received his letter today, and he was quite impressed. The medical team has made a few decisions - Katie will be allowed to go to Camp Happy Days as long as she continues to test negative for the bacteria (Katie swears she is negative now), AND she makes it through her MRI next week and her mIBG scan next week with no progression on her cancer. If she becomes positive for the bacteria, she will most likely have her central line removed, and if her cancer has progressed then she must start chemo again on July 3rd and miss Camp Happy Days. She seems ok with all of this. She has been much sweeter and calmer than on Saturday. That "bug" in her blood sure did give her an attitude.

The little one was also happy to have all of us home together. She went to bed a little early, exhausted. Erika went to Cypress Gardens today and had fun, but we could tell she was beat. Poor baby needs some down time - we all do. Next week, instead of the planned chemo and radiation, Katie will have three days of scans, and lots of blood work. Mike is off on Friday next week as the Beneteau plant will close starting then for a week. He has made plans to go home to visit family, so hopefully he can still keep those plans.

Take care, everyone.

Love, Michele

Tuesday, June 20, 2006 9:10 PM CDT

We got good news and bad news today. The good news is (1) that Katie has had no fever since early Monday morning, so she has gone more than 24 hours without fever, (2) the bug was identified, and (3) Katie has had much more energy and is back to her usual self.

The bad news is that (1) she was not on the right antibiotic so we had to switch to a new one therefore...(2) Katie can't come home until tomorrow at the earliest, and..(3) she can't leave the house when she comes home until she tests negative for the bacteria,...and (4) she needs to start Round 5 of chemo and radiation on the same day as Camp Happy Days starts.

Katie is working on #4. She wrote a letter to her oncologist explaining that she really, really wants to go to that camp, and she would appreciate it if they can reschedule chemo. We are on board with that, unless it would be harmful to wait longer to give her chemo. Neuroblastoma is tricky - waiting a week could give it a leg up and allow it to start new tumors which is what we do not want, camp or not. So Mike will be discussing that with the oncologist tomorrow while he reads Katie's letter.

We are exhausted, overwhelmed, and trying to get through the day. We have been playing tag team parenting this week - we come home late, then get up early to either go to work or care for the girls. The "bug" was a bacteria that we all have commonly in our gut to aid in digestion. When Katie's counts got low, this bacteria decided to take up residence in her bloodstream and go crazy. I think it is called enterobacter aerogenus (or something like that). Hey Kathy - that's bad - but Katie fought it off.

Hopefully tomorrow Katie will be home and we can get some peace. Thanks for the prayers, everyone and the visitors...we have appreciated it all!

Love, Michele

Sunday, June 18, 2006 9:00 PM CDT

Hi, everyone.

I don't have good news - Katie is in the hospital at Richland Memorial. She is inpatient because she has a bacterial infection in her blood. Yesterday, we went to pick up the girls from Camp Kemo. They both had a fabulous time. As soon as we saw Katie, she didn't say hello, didn't hug us, just said, "I want a cell phone!" I kind of did a double take, and said, huh? She said, "I want a cell phone now!" Then, when I said no, she spent the next two hours not speaking to us...lovely. She finally apologized in the car on the way home, and after the "I'm sorry" we got, "So, now can I have a cell phone?" RRRRRR. Love the pre-teen stuff.

We got home at about 3:30 p.m., and we all kind of flopped down and relaxed for a little while. At about 5:15, I was trying to figure out what everyone wanted for dinner. I passed by Katie and kissed her on the forehead, and she felt very warm. I took her temp and it was 101.5 - necessitating a call to her oncologist. She wasn't feeling bad, just had a fever. We talked for awhile and decided that Katie should go to McLeod to get her blood counts done, then we would decide what to do after that. On the way home from McLeod, Katie started complaining that the car was too cold. I didn't even have the air conditioning on - I had my window down and I was sweating. I looked over and she was shaking. By the time we got home, her temp was 104.6 and she had a terrible headache. I called the oncologist again, and we were on the way to Richland Memorial. We got there about 8:15 p.m., and after many blood tests and a chest x-ray, we fell asleep at 11:45 p.m.

This morning, we found out that Katie has "gram negative rods" in her bloodstream - a bacterial infection. She has been fighting this monster fever on and off all day. When the fever is up, she is miserable. When it is down, she is ok - tired, not eating, but not too bad. She will have to stay in the hospital until the fever is gone for at least 24 hours, and they can specifically ID the bug that is in her blood. She started on one antibiotic last night, but that was switched to two other ones this morning. This could take another 2 or 3 or more days to figure out. The worst thing is that this is a major set back on her chemo schedule - she will not get chemo or radiation next week, because her blood has to be clean from this bacteria. She will be on IV antibiotics for at least 2 weeks, but if we can ID the bug, and her fever goes away, she can do the antibiotics at home.

Mike is with Katie tonight because I have court tomorrow. Being inpatient is bringing back so many memories - the place still smells the same. We walked down to see Katie's transplant room - she spent 30 days in that room more than six years ago, and it was a nightmare. Please send those prayers on our way right now to get rid of this nasty bug and get Katie home. Everyone keeps asking her if she needs anything, and she says, "Yeah, I want to go home!" Hey - at least it's not, "Yeah, I want a cell phone!"

Love, Michele

Friday, June 9, 2006 6:52 AM CDT

Katie had another long day yesterday - she slept a lot, and Mike insisted that the clinic run a test of her hemoglobin. It has really dropped, so today, Katie gets her first blood transfusion since she relapsed. This is totally to be expected, and hopefully will give her the energy she needs through the weekend. She is very nervous, though, and could use your prayers. She doesn't remember getting a transfusion when she was five, and all the talking from us isn't helping. Luckily, she will be pre-medicated with Tylenol and Benadryl (in case of an allergic reaction), and she will probably sleep through the whole thing.

This morning Katie and Mike will also meet with the radiation oncologist to develop a plan for radiation - more fun. She's so strong, though. Last night we had a big thunderstorm, and the lights went out for about three hours - Katie was the calm one. We all bunked down in the living room for the night until the lights went back on at about 10:00 p.m. - she went immediately to her room and told us she "needed" her bed.

Take care everyone.

Love, Michele

Wednesday, June 7, 2006 8:58 PM CDT

Hi, everyone.

Katie's last two days of chemo have been ok...not great, but ok. Yesterday, she slept a lot and complained that her legs were wobbly and she felt like she would fall if she walked a lot. One of the doctors examined her and she had good strength in her legs. At the end of the day, Crazy Mike (a cancer survivor and now a Camp Kemo counselor) was in the clinic, and he started a pillow fight with Katie. They ran around the clinic screaming and throwing pillows at each other, so her legs were fine by then. We stayed at the pool house last night and had dinner with Joel and Pat. Thank you again for your wonderful hospitality!

Today, Katie's arms feel like her legs felt yesterday. She slept most of the morning, and all of the way home, and she hasn't eaten much of anything. She was devastated this morning when she realized that it was only Wednesday - she was sure it was Thursday. Tomorrow or Friday, she will meet her radiation oncologist and we are going to set up her radiation. Because it will be localized to her right arm, she can do the radiation on conjunction with her next chemo, to minimize the trips to Columbia. Tomorrow and Friday, Daddy is going to have clinic duty.
Take care everyone.

Love, Michele

Monday, June 5, 2006 7:44 PM CDT

First of all, happy anniversary to my parents - 41 years and going strong! Congratulations. In my line of work, you are truly an inspiration :)

Katie started round 4 of chemo today. One of the technicians insisted on sticking Katie with a needle today - I tried my best to convince her that wasn't necessary, and so did Katie with her sobbing, but still....finally, right before the needle stick, another nurse called the lab and said to stop, that there was no need for a needle stick. Katie has decided to carry a grudge against this technician, but I convinced her that everyone makes mistakes. Anyway, it was kind of disguised blessing - Katie had been whining all weekend about not being able to swim because of her line, and after that experience this morning, she is fine about the no swimming thing! No needles for Katie Krize.

Now for the best news - Katie's bone marrow results from California (tests done on May 4th) came back - her marrow is clean! It was such a gift from God! We really couldn't believe it - after just two rounds of chemo, her marrow was clean. We are very excited. We also found out that Katie can do radiation while she is getting chemo, because she is only getting radiation to a small part of her arm, and it won't affect her counts very much, so we can save a few trips to Columbia. She will probably have radiation on the next round or the one after that (end of June and end of July).

Katie will have some more scans in the next few weeks, and we are hoping for more good news. Today was long - it always is the first day back, and Erika came with us, just to see what it was like. Unfortunately, she had a blast. The girls played, painted, colored, put puzzles together - in other words, it was an entire day of getting spoiled by the staff at the cancer clinic. They painted each other pictures that said "I love you big sis" and "I love you little sis". Right now, they are screaming at each other and beating each other up with pillows - SIGH. Can't have it all, I guess!

Chemo will be every day this week, then next week is CAMP KEMO - woohoo! Both girls get to go this year, and they are psyched. By the way, if Debbie Nix is reading this, Katie knows you and remembers you well - the 2005 Camp Kemo Keepsakes has a great page about you! We met a whole group of new counselors today, and it looks like a real energetic group.

Take care everyone.

Love, Michele

Friday, June 2, 2006 5:17 AM CDT

Hi, everyone. Is it really June already?

Katie has been doing great. Her counts came back up on Monday, and she has been enjoying her week at the YMCA's Adventure Camp. Yesterday, I picked up the registration forms for after school care and it came as a great shock that I only needed one form - Katie will no longer have after school care because she'll be in middle school. Unbelievable! Katie has insisted that I deliver her to the Y as soon as it opens, and not pick her up until the minute it closes. She has been trying to invent something all week that will enable her to go swimming, even with her central line. The chance of infection is so huge, though, that we just can't allow it.

Tonight, we get to go to the Riverbanks Zoo for a special night for children with serious illnesses like Katie, sponsored by the Richland Children's Hospital - we are hoping for no thunderstorms. On Monday, round 4 of chemo gets started. The week after that is Camp Kemo - a whole week for the girls without parents. They are very excited. Have a great weekend everyone.

Love, Michele

Thursday, May 25, 2006 8:02 PM CDT

Today is Katie's 12th birthday! It seems so unbelievable that she is that old! I remember the first time I laid eyes on her - 19 months old on Christmas Day 1995. Where has the time gone? And to have done so much in such a short time...

Katie is doing pretty well - she had a quiet birthday with Nanny and Pop-Pop. I was trying a case all day, and Mike worked, but the girls got to spend the day with their grandparents. We had Katie's blood test today, and as predicted, her counts are low, and she is again on house arrest. Her hemoglobin is lower than ever - and she stayed pretty quiet all day, and didn't even play outside, but she insists she is not tired and just wanted to veg out today. We are going to spend a quiet weekend at home, but hopefully have some fun on Monday when her counts should rebound.

On Wednesday, our other family at Erika's school (McLaurin Elementary) asked us to come in to visit. They gave us a huge jar filled with money from some popsicle fundraisers they were holding. It was unbelievable. They filmed Mrs. Cribb, the principal, giving us the present, and I tried to talk and of course, cried like a crazy woman. Katie attended McLaurin in the 4th grade, and Erika has been there for three years. It truly is a wonderful school, and we do feel like everyone there is family. Not just since this has happened to Katie - the faculty and the administration there have always been supportive of our girls and their education, and we really feel blessed to have McLaurin in our lives. Thank you, everyone at McLaurin.

I found the words to the song in "Wicked" that made me cry so hard...and I wanted to add them to today's update in honor of Kate's birthday.

"For Good"

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led to those who help us most to grow if we let them
And help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today because I knew you....

Take care everyone.

Love, Michele

Monday, May 22, 2006 10:41 PM CDT

Hi, everyone. Life has been boring at the Krize house - woohoo! We like no news.

The week of chemo went very well. Katie slept through most of the chemo Friday, and the nurses cranked the fluids so we could get out of there early to get home to prepare for the sixth grade dance! Katie was totally psyched. She went with a friend, who then spent the night. It was wonderful. They did NOT dance with any boys (ick), and still had a great time. To put it mildly, it exhausted our little girl. Even with her friend in our house, they turned the TV off at 10:00 p.m. and went to bed. The next morning, Erika got to go to Mr. Mark's (kind of like a Chuck E Cheese with mini golf and go-carts) with a friend of hers. Places like that are generally out for Katie - WAY too many kid germs. Katie spent the rest of the morning and afternoon a zombie - either sleeping or watching TV. She also started on another milestone - taking pills. Katie takes a prophylactic dose of an antibiotic twice a day for two days of the week. The liquid Septra really upsets her stomach, so we tried pills. Katie has never swallowed a pill in her life. We cut the pills up into fourths and she took them on Saturday and Sunday, morning and night. By Sunday night, she was much improved. It really is an accomplishment she is proud of!

Sunday was kind of a lazy day - we really needed it. We did some grocery shopping and cooking (Katie is on another seafood kick), and Mike put up some mini blinds in the house. Now we have one window with white blinds, and all the other windows have cream colored blinds....eventually they will all look the same!

Katie made it through school, and hanging out at the YMCA, and had a great day. By Thursday, Katie will be on house arrest again. It's a shame because Thursday is her birthday. The day will start with a visit to McLeod where MOMMY, not her NURSE, will draw her blood, then she will spend the day with her grandparents. I have to try an all day case, but we are hoping to have a little private celebration that evening. She is having a girls only sleepover in a few weeks for her birthday party, once this house arrest is lifted.

Have a nice week everyone!

Love, Michele

Thursday, May 18, 2006 9:19 PM CDT

Hi, everyone.

Things are good! Katie has had a nice week of chemo - no nausea, a lot of tiredness, though. She was pretty beat tonight. I told her to preserve her energy for the 6th grade dance tomorrow night. Apparently, the theme is a "cruise." She has been coordinating outfits with a friend, and they will go together to the dance - no, this friend is not a boy. Boys are still yucky, thank goodness.

We got great news last night about Katie - her teachers believe they have plenty of test scores to establish her grades for this quarter, so she doesn't have to do anymore catch up work. Her teacher says she is moving on to 7th grade. Katie did do some work while she was out, and did extra work when she was in school. We had Erika's IEP meeting, and she has done beautifully in first grade, and is moving on to 2nd grade with flying colors as well. When we were eating dinner tonight, Mike and I announced how proud we were of both of them to have made those accomplishments in school, given the last few months.

We also got horrible news last night. My Aunt Reen (my mother's sister) is an 8 year survivor of breast cancer. It was in remission for five years, and returned 3 years ago on May 5th. Aunt Reen's cancer has progressed and there is a new treatment regimen, and she is in a lot of pain. However, when I spoke to her, she sounded wonderful. A few months ago, right before Katie relapsed, Aunt Reen was at my house. I had my feet up, playing cards with my mother and their other sister, Sandy, while Aunt Reen did my laundry. How embarrasing - my aunt with cancer was doing my laundry! She wanted to, though, and I accepted! She has a wonderful attitude, and she is strong. When Katie relapsed, she shrugged her shoulders and said, "Well, look at Aunt Reen - she's doing great!" Aunt Reenie - you are such an inspiration. We love you so much, and hope this new radiation and chemo give you some relief from the pain.

Thanks again for all the thoughts and prayers.

Love, Michele

Tuesday, May 16, 2006 7:39 PM CDT

Hi, everyone.

The last two days of chemo have gone very well. Yesterday, Katie's counts were good - her platelets were wonderful. Her hemoglobin was still a little low, and I can't believe she has any energy at all. She came home last night and we had dinner together as a family. She changed into her jammies right away and vegged out in her room. That lasted until after dinner, when Garrett came over to play - she was dressed and out the door onto her scooter. I said a little prayer of thanks for Garrett, and all of Katie's friends. They have all treated her like gold, and just like a regular kid who has to be away a lot. I know that motivates her to put aside all the yucky stuff.

Mike and Katie are staying at the pool house tonight. We got the results of the bone marrow aspirate from Columbia, and she is still clean. We are waiting for California's results, though.

I'm sorry I haven't returned some calls and e-mails - I've had a busy week in court and it continues to be non-stop for about two weeks. Thanks for your patience, and as always your prayers.

Love, Michele

Sunday, May 14, 2006 10:35 PM CDT

Happy Mother's Day!

We had a quiet, uneventful, nice Mother's Day - just the way I wanted it. The girls gave me a beautiful necklace and matching earrings. I got to speak to my own mom, who gave me the best example of motherhood so I can deal with life as a mom. I love you, Mom. We missed Oma and Godmommy by phone, but to both of you - we love you and couldn't have done any of this without you. My mother-in-law is shining from heaven - we miss you, too, MiMi.

Tomorrow, Katie starts round 3 of the topless cyclone. Let's hope it does more of its destructive work on her cancer. Mike is going to be chemo dad all week because of my court schedule, and because of Erika. While we were in Chicago, the little one showed out pretty badly. Katie is understanding, luckily. This is the last full week of school. Katie is very concerned about making it to the 6th grade dance on Friday, but knowing her - she will be fine. Katie continues to feel great and look amazing. Her central line has been bothering her a little bit. The dressing on top of the line caused her to break out pretty badly. We changed dressings, but it has only helped a little bit. The nurses at the cancer clinic promised to give us something to help that tomorrow.

The YMCA's car wash was a success and we got some real help...thank you so much, everyone, especially Miss Stacy who organized the car wash. The help is much appreciated, especially with gas at almost $3/gallon! Hey - at least we aren't sitting in line like in the 70's. We'll let you all know how the week progresses.

Take care.

Michele

Wednesday, May 10, 2006 9:41 PM CDT

Hi, everyone...we are back from Chicago. It was a really good trip. The traveling was fine, the weather was good, and we squeezed in a little fun with the trip to the oncologist.

We got to Chicago on Monday afternoon, and checked in at our hotel. After unpacking, we headed to the Navy Pier, where we rode a giant ferris wheel and played miniature golf, and ate at one of our favorite restaurants - Bubba Gump. We ate at one in Honolulu and at one in Charleston, and we really enjoy it. Katie was most fascinated by a mother duck and her eight babies that were swimming in a pool of water that surrounded the swing ride. We spent more time watching those ducks than anything else.

The hotel clerk convinced us that it was a short ten minute walk from our hotel to Children's Hospital - yeah, right. Tuesday morning, it took us almost 30 minutes and we were worn out. We did get to look at the beautiful Lincoln Park section of Chicago from the ground, though! We were the first ones in the clinic, and the second patient there was a friend we met on the neuroblastoma listserve. It was wonderful to talk with another parent of a child with neuroblastoma - up close and personal, instead of on e-mail. We met with Dr. Cohn for about an hour and a half. Katie slept for an hour of it! It was WAY too boring for her. I have no idea how to condense our discussion into a brief e-mail, but I will try. Dr. Cohn likened Katie's relapse with neuroblastoma to her having HIV, or even AIDS. This is going to be a lifetime battle, and hopefully we can just stabilize her disease and she can move on with her life. Katie only has a tumor in her arm, and some bone marrow involvement, and it looks like the arm has responded to the chemo she has already taken, and has improved. We don't have bone marrow tests back yet. Unlike at first diagnosis, hammering this cancer with everything in the world is not the most effective way to treat it. Well - it COULD be, but there are no statistics that show that ramping up the chemo, even doing another stem cell transplant, is any more effective than the two chemo drugs she has gotten so far. And she has tolerated those beautifully.

Dr. Cohn also explained why everyone is discussing quality of life. Since Katie's treatment is likely to be long-term, and by that I mean years and years, then trying to find something that (a) will not make her deathly ill, and (b) will still hold her cancer in check, is what all the docs mean about quality of life. We have quite a few options at our fingertips, all of which we can pick from, or bounce back and forth to. The hope sincerely is that they will find a cure before Katie's disease decides to progress to the point of no return.

We left with a plan - four to six more rounds of this exact chemo - topotecan and cytoxan, then local radiation to the arm. After that, we are going to closely examine some clinical trials being run by NANT (new approaches to neuroblastoma treatment). Several sound promising - like one that focuses on using a drug kind of like Fosomax for osteoporosis, along with some chemo. The osteoporosis drug has been shown in the lab to prevent progression of bony tumors - very interesting. We are also looking into mIBG therapy - kind of like internal radiation - the radioactive dye that is injected will seek and find only neuroblastoma cells and kill them. There is a new drug out there made by Abbot Labs - I think the name is ABT-751, that has also shown promise in keeping the neuroblastoma stable, and that may come open as a clinical study that we can use out of our oncologists in Columbia within the next six months to a year. At any point, if there is progression, we can change course.

We can get treatment for NANT trials in Atlanta, so we won't have to go back to Chicago - which is kind of a shame, since it was such a neat city. Katie thinks it was too noisy and busy, though. Tricare will also be disappointed. After denying our request initially to go to Chicago, they granted us 25 visits there! Unbelievable. Kind of cracked me up. They haven't even granted us that many to our own oncologists in Columbia. What a mess.

After that intense visit, we went to the American Girl store, to the top of the John Hancock Center, and then last night, thanks to Beanie, we went to see "Wicked" at the Oriental Theatre. It was Katie's first experience at live, big theater (no offense to our wonderful theater here in Florence!) The show was amazing. There is a song at the end that about killed me - it was about knowing someone and how just simply knowing that other person made you a better person - I was sobbing again - embarrassing Katie again - she has about had it with me. Our trip back this morning was uneventful, and we are so glad to be home.

I always thought treatment the first time took forever. Beginning to end, it was fourteen months. Right now, this looks like well more than that. It is daunting, and none of it will be easy. Katie, however, seems to be taking all of this in stride. Her question is always, "What's next?" with a smile on her face. We were laughing this morning about something ridiculous, and in the airport in Chicago, a woman sitting beside us commented that she had never seen such a happy little girl, which just made us laugh harder. If only she knew!

I guess the whole point of this story is to ask you all to hang in there with us for the long term. There is no simple fix for relapsed neuroblastoma - there is no fix at all, just band aids. And we are going to use every band aid possible. Take care everyone.

Love, Michele

Sunday, May 7, 2006 10:20 PM CDT

Hi, everyone.

Erika's First Holy Communion was very sweet - she looked like an angel. Rick, our neighbor, thought she looked like a little princess! Everything went fine - she didn't make too much of a bad face when she tasted the communion wine. The whole class was great - they each took a part in the Mass, and we were all so proud of them. There was a prayer that the parents said, and then a prayer the children said, and I could barely get through either of them. Erika sat two rows in front of us, and kept looking back to tell me something. Katie, Erika's other mother, kept yelling at her to turn around. Well, it turns out that I never took the tag off her new dress and it bugged her all during Mass. Poor baby. She was so ready to go to church this morning, as well. She couldn't wait for communion. We joined Michael and his parents for a picnic in the afternoon and everyone had a good time.

Katie's fine - she had a low key day today. It rained pretty much all day. It is 11:15 p.m, and I've only started packing for Chicago. I guess I should get going and finish up and get some sleep. I'll send out an update once we return on Wednesday!

Love, Michele

Friday, May 5, 2006 4:52 AM CDT

Hi, everyone.

It is abou 5:30 a.m. - I fell asleep last night, and missed sending this update out.

Yesterday went fine. Katie and Mike went early to the hospital. She had an appointment in oncology where they ran blood work (wonderful numbers), and they checked her out to see if she could go through the surgery. She has a wicked cough but the doc thought it was just upper respiratory. I got there just after they wheeled her into surgery because I had court in the morning. The bone marrow seemed to take forever - Dr. Laura was doing them, and I was a little worried about her - she's petite, and Katie's got tough bones. Dr. Kevin and Dr. Ron always complain about how the really have to dig in there to get her marrow. Well, after a little while, we heard someone say, "Go get Dr. Ron..." Mike got really worried, but I knew it was because Dr. Laura was having trouble getting the marrow. Sure enough, that was it...both doctors came out and told us about Katie's strong bones, and that they really had to work to get her marrow, and she was going to be in a lot of pain afterward. This is NOT an indication that she has cancer in her marrow, just that the way she is built makes it difficult to do the biopsy and aspirate. At the end of the procedure, she had a laryngeal spasm - her throat was spasming open and closed, but it passed quickly and she was fine. This time she came out of anesthesia very easily - Daddy left about that time to go pick Erika up for First Communion practice.

After the procedure, we ate lunch. It was like walking around with a drunk person - she was so funny. Katie couldn't walk a straight line, and she was talking so cute, and telling the funniest stories. We had the MRI after that, and it was cake. The MRI is very loud, but Katie slept through the whole thing. We had to go to Sumter after the MRI to get Katie her favorite salad from Georgio's, then we drove home. Today, the bribe gift was a salad.... I figured Katie would hit the bed as soon as we got home, but no. She hit her scooter and went out and played. The first time she had pain medicine was right before bed. She is bound and determined to go to school today. I'll be waking her up in a few minutes, so we'll see.

On Saturday, our little Erika has her First Holy Communion. She has been looking forward to this forever. I'm glad she'll have something that is just about her. I'm making Katie wear a dress again...ha ha. On Monday, Katie and I will head to Chicago, and our appointment is on Tuesday. We'll return Wednesday afternoon. We hope to have the results of the bone marrow (at least the local results...as we all know it takes California forever), and the MRI today or Monday.

Thanks again for all your thoughts, prayers, and other help. Everyone at Dalzell UMC - Katie loved her cards - she opened them up after the bone marrows yesterday and they were so sweet.

Love, Michele

Monday, May 1, 2006 8:46 PM CDT

First of all, how did it get to be May? This month, Katie turns 12 - I just can't believe it.

Katie had blood work done today - her white count is amazing, thanks to the Neupogen. She is off her house arrest. I knew the counts would be great today, so she went to school. Her hemoglobin and platelets are still low, but you wouldn't know it. Katie fell off her scooter yesterday, and scraped up her hand, but it didn't bleed too much and seemed to clot pretty fast. Low hemoglobin hasn't affected her a bit - she was VERY energetic today.

Tonight, Katie sang in her spring concert with the Moore Intermediate Chorus. She was awesome. Katie hasn't been to many rehearsals lately because of our crazy schedule, but she didn't miss a beat. She looked so great up there. Katie did wear her wig - a friend of ours sat with us, and she commented that Katie looked like an Indian princess. We'll put pictures on her website as soon as we can. She smiled and belted out her songs. One of the songs was "Tomorrow" from Annie, and I admit it - I did cry. We were about 6 rows back from the stage, and Katie is as blind as I am - but as soon as the concert was over, she came up to me and said, "I saw you crying, Momma! No more!" I don't even think Erika or Mike knew that I boo-hooed, and they were sitting with me! Then she said in that flip little attitude voice, "It's not like it's my last concert, you know." She really knows how to rip my heart out of my chest. I wasn't crying about it being her last concert - I was crying because it all seemed so normal, and normalcy right now is wonderful.

Katie has bone marrow aspirates and biopsies on Thursday, and an MRI. She is not looking forward to the bone marrows, but understands that it has to be done. She told Nanny tonight that she isn't scared, she just doesn't want to be in pain. Who can blame her?

Take care everyone.

Love, Michele

Friday, April 28, 2006 5:25 PM CDT

Hi, everyone.

We've had an eventful couple of days. On Thursday, Katie had her blood counts (yes, Michele the nurse is still drawing them at McLeod Hospital). They came back low, as expected. Her white count was 1.2, her hemoglobin was 8.4, her platelets were 122,000 and her ANC was 456. If the ANC is below 500, that is the danger zone, so Katie is back on house arrest until the next blood test on Monday. She has developed a nasty cough and runny nose as well, so a little down time will be great. She was running a slight fever - not enough to call the doctor, and it seems to have worked itself out. Katie was in school Monday through Thursday!

She stayed home with Daddy today - she was coughing and on the threshold of having to go to the hospital to get checked, so we felt safer having him here so that he could get her to the doctor as quickly as possible as I was in depositions most of the day. This tag team parenting is the best. We also very much appreciate both of our employers (Beneteau and McDougall & Self) for being so supportive in our care of our little girl. Katie hasn't changed out of her jammies today - she is a bear in her cave, and that is fine.

Now the best news - Tricare has reconsidered, and is now approving our visit to Chicago. We found out that the doctor from Tricare, our doctor in Columbia, and a doctor at St. Jude's had a conference call. Apparently, Tricare had NEVER contacted St. Jude's to even see if a consultation there would be sufficient, possible or anything. The doctor as St. Jude's told Tricare they had nothing to offer Katie, that they would be in the same situation as our doctors in Columbia, and they would want Katie to see Dr. Cohn. I am thrilled that they changed their mind, but cannot believe what we all had to go through to get to this point. Hopefully, Tricare will listen better once we consult with Dr. Cohn and decide on a course of treatment.

I hope you all have a wonderful weekend. Keep in your prayers everyone going through this cancer battle - there are so many children and adults out there, and more each and every day. Patti's cousin Bill is going through a tough time now, and we keep him close to our hearts as well.

Love, Michele

Tuesday, April 25, 2006 9:04 PM CDT

Hi, everyone.

Today was a special day for our family because it is Mike's birthday! He turned 57 today...only kidding...47...ok, he's really "only" 43. That's still WAY older than me.

We got some bad news yesterday - the California bone marrow results finally came in, and Katie's cancer has spread to her bone marrow. The lab found that 22 in one million cells were malignant neuroblastoma. We were sad to hear this, but since the sample was taken before two rounds of chemo, we are hoping for a great response from that chemo. After all, it took her hair, the least it can do is clean up her bone marrow.

The fight with Tricare is not over - they have refused to pay for our consultation with the doctor in Chicago, and instead, are insisting we see doctors at St. Judes. They have wonderful pediatric oncologists there, and who knows - her treatment may end up there, but none of the doctors are members of NANT - the pre-eminent neuroblastoma treatment group (New Approaches to Neuroblastoma Therapy). The doctor in Chicago is the former head of the neuroblastoma group of Children's Oncology Group, and a member of NANT. So, in other words, the doctor and nurse reviewing Katie's file at Tricare did not feel it is necessary for Katie to see a person who specializes in her cancer. We already have four wonderful oncologists in Columbia, and they are the ones who want us to see the doctor in Chicago. Seeing a doctor at St. Jude's is just like consulting with the doctors we already have.

I do want to thank Dr. Crickman in Darlington - she is our family doctor. All of our referrals have to come through her. Dr. Crickman and her nurse, Dale, really advocated for Katie and fought with Tricare for extended amounts of time. Then, Dr. Crickman also contacted Lindsey Graham to complain. We are going to Chicago anyway, and we are going to appeal Tricare's decision as far as we can. Katie's appointment up there is set for May 9th. We only met Dr. Crickman a few months ago, when Mike retired from the military. She saw Katie only once before this relapse, but she and her staff have really done a wonderful job getting the referrals out and helping us.

In the meantime, Katie has gone to school for a full day both yesterday and today, and even went to the YMCA today. She seems happy, and is thrilled to be in school. Tricare can stick it - they may not care about our child, but we do, and so do many, many others - we have people praying for us all over the world, and offers to help in every way. Thank you again, everyone, for everything you have done, offered to do, and for all the prayers.

Love, Michele

Sunday, April 23, 2006 5:17 PM CDT

Hi, everyone.

We've had a relatively quiet weekend. Katie has used her anti-nausea medication, but she is eating well. She is a little tired (she didn't get up until 11:00 a.m. this morning).

Katie's hair has been falling out and she was getting some bald spots. We decided to take her braids out to see if I could put the hair into a different style so that we could prolong the inevitable. Well, apparently, the inevitable was here. As soon as I started taking out her braids, all of her hair ended up in my hands. I just couldn't believe it. We took some pictures, but they were for us - if she feels like sharing, then we'll post them on her website. As we finished, Katie decided that she wanted to go wig shopping. She is convinced that the kids at school will not take kindly to her bald head. So, we found the cutest little wig for her and brought it home. And guess where it is - on the foam stand we bought today. She is out in the neighborhood, riding her scooter, with a bandanna on her bald head. And she looks just as beautiful as ever. I bet she'll wear that wig once and be done with it. She wants to wear her wig AND a hat...just to be cool. Kate keeps coming up with good things about losing her hair - no more sitting for hours getting it done, she'll be cooler in the summer, she can wear all of her hats even to school....

Up until now, Katie looked completely normal. The hair loss is hitting Mike and I hard - we can see the effects of cancer on her, and it makes us angry and sad. Luckily, we have Katie - who keeps a positive attitude. Erika has been very tempted to make fun of Katie, but she is holding back...good thing, or she may be sleeping in the garage! Take care, everyone!

Love, Michele

Saturday, April 22, 2006 7:06 AM CDT

Hi, everyone.

Katie finished out the week of chemo with no problems. She really did well - no nausea, just a little tired. We got some good news - three weeks ago, when Katie first started chemo, the doctors tested her urine for blood - and there has been a trace amount since we started. That's not good - it shows her kidneys may not be handling things as well as they should. But this week, as of Tuesday, the tests came back clean. All the fluids she gets during chemo must be doing the trick.

We also need to report that the hat party was necessary - Katie's hair has started falling out. I have taken it harder than Katie has. She just hit the hat boxes this morning, although you really can't tell - to me it is obvious - I see the bald spots where she used to have hair, but her hair is braided so it doesn't look so bad.

We had major arguments with Tricare this week - they do not want to pay for the doctor in Chicago, but have offered us two other oncologists, neither of which specializes in neuroblastoma, and are essentially the same as our oncologists here. It is not that we don't trust our oncologists - they are the ones who want us to consult with one of the top neuroblastoma oncologists in the country. Tricare just wants to save a buck. Our local doctor and her nurse have been wonderful in advocating for us - it's not over yet. I was on Tricare's website and looked at what they have paid on Katie's claims thus far, and it is embarrassing. For example, on Katie's $6,000 bill for her surgery, they paid $1,200...on a $900.00 bill, they paid $11.00. It makes me sick. No wonder hospitals inflate their bills...they have to if they have to deal with insurance like Tricare. Mike gave the military twenty years for this.

Mom and Aunt Sandy left this morning for Florida. They gave us peace of mind when they were here, and I cried when they left. The girls loved having them here, especially Erika. Erika was so good in school this week, and she is doing really well. We are so proud of both of our girls.

Katie hopes to go to school all next week, and is begging to go to the YMCA. I hope she has enough energy, and her counts stay up. She amazes me every day.

Take care, everyone.

Love, Michele

Tuesday, April 18, 2006 7:48 PM CDT

Hi, everyone. Mike took Katie to chemo today, and she did very well again! She was pretty quiet when she got home, but perked up later and played outside again. STILL no results from California on her bone marrow! Katie visited with her art therapist today - a wonderful artist named Lyssa, who knew Katie six years ago. She had Mike signing releases because Katie's artwork is going to be displayed at the Columbia Museum of Art, and will also be on display in Richland Memorial's Cancer Center. For all of our old friends, Katie did a fish picture years ago that was displayed, and it is still proudly in Katie's room.

Katie and I will go to Columbia tomorrow - poor Mike has to go back to work. He has done a wonderful job, and I know he has loved having this time with his girl. No word yet on Chicago - Mike tried, so I'll try tomorrow. We are going to stay in the pool house because Katie hasn't been very fond of the long drives. Still, it has been nice to be home with Erika and my mom and aunt every night - they are definitely spoiling all of us! But, I have to tell on them. Aunt Sandy loves my chili, so I made some for the crock pot, to cook all day. Well, they got into the chili at lunch time - but they did confess when I got home. Of course, they blame each other and I still can't figure out who the instigator was!

Erika really enjoys having them here, and she has been on her best behavior. I am so proud of both of our girls! Thank you again, everyone, for all the wonderful support.

Love, Michele

Monday, April 17, 2006 6:25 PM CDT

Hello, everyone.

I hope everyone had a nice Easter. We really did! The girls looked amazing in their Easter dresses - yes, I finally talked Katie into wearing a dress. Unfortunately, it had a crinoline in it (ok, I went overboard...) and it drove her insane. Too much fun. The girls spent their spring break with their grandmother and Aunt Sandy here at our house and they had a good time. Katie still feels and looks wonderful. Her counts stayed high enough to tolerate going out, so we did some shopping and went out for dinner Saturday night. We had a lot to celebrate - Katie received her letter on Saturday that she got into the IB program at Williams! We are very proud of her.

Today, Katie started round 2 of chemo. Mike went with her, as I was in court all day. They got a late start on the chemo because they had to run blood counts, and get her checked out by a nurse practitioner to see if she is healthy. Her counts were good - not great, but good, and good enough for chemo. Her hemoglobin has slipped a little lower, and I predict that after this round, she may need a blood transfusion. Not that you can tell - she came home and immediately headed to Garrett's house to play, and I just heard her scream outside. She is like the Energizer bunny!

No results from the bone marrow in California - one of the nurses called today, but we may get the results tomorrow. We need your prayers on something else, though. It looks like our insurance company (the lovely Tricare) is not going to give us the authorization to see the specialist in Chicago. Mike spent 20 years in the military, and this is the thanks he gets. We will fight this, of course, and hopefully it will work out, so please ask God to lay a heavy hand on our HMO!

Erika received a package today from SuperSibs - it's an organization dedicated to helping children who have a sibling with cancer. Mia Hamm is one of the celebrities endorsing this group, and there was a letter from her in the package - very cool. Erika was good today in school, and she had her homework all done when we got home. She's been a real trooper.

From drawing her blood ourselves, to fighting with the insurance company, to the worry over Katie's life, to the effect of all this on Erika...sometimes this is so overwhelming. But when I think about one more precious day with my attitude filled, almost a teenager, rotten, beautiful, wonderful girl - it is all worth it.

Take care everyone.

Love, Michele

Tuesday, April 11, 2006 10:35 PM CDT

We got some wonderful news today - Katie's white count has skyrocketed (thanks to the Neupogen), and her ability to fight infection is now better than mine. She was released from house arrest, made a beeline to Wal-Mart to buy a doll she has been wanting, and spent the rest of the day acting like a normal 11 year old (fighting with her sister, playing outside, going to Sonic for ice cream with mom!)

Katie's hemoglobin was the same, and her platelets dropped a little bit, but all of those numbers were still better than expected. Round 2 of chemo will start on Monday, April 17th. A friend from the neuroblastoma listserve called Katie's chemo cocktail the topless cyclone (the drugs are topotecan and cyclophosphamide). That's much easier to say than that mouthful of a real drug name.

Nanny and Nan (my mother and my aunt Sandy) are here entertaining the girls for spring break, and cooking and cleaning for us..it is wonderful. We were supposed to be in Florida for a week with them, going to Sea World and swimming every day. Instead, we are fighting this beast again. Katie keeps us going - she is such a warrior princess. She gets sad every once in awhile, and some things we have to do are horrible, but overall, she can find a positive in anything.

Hope everyone is enjoying this beautiful weather....

Take care.

Michele

Sunday, April 9, 2006 1:42 PM CDT

So far, we are having a very low key weekend. Katie has felt awesome and just cannot understand why we can't go shopping, or to the movies. She has played outside a lot, and spent time with our neighbors.

We are waiting for Candice to come and braid hair - I just washed Katie's hair, and it really isn't coming out. Maybe the hat party did the trick - if she has enough hats, she won't lose her hair!

Tomorrow Katie is having another blood test, so we are hoping for better results. I added new pictures to the website so check them out!

Take care.

Love, Michele

Friday, April 7, 2006 6:14 AM CDT

Katie has had a great week - until yesterday. She made it through a full day of school on Tuesday, Wednesday and Thursday. Yesterday morning, before school, we went to McLeod Hospital to have Katie's blood counts done. It was actually kind of funny - our cancer clinic in Columbia warned us that they may not have the right equipment to access her central line, and thus, would end up sticking her with a needle to draw blood - which is a huge NO NO to Katie. So, they gave me everything I needed to do it. Well, of course, they didn't have the right supplies, so I told the person in the lab it wasn't a problem, that I would do it. Well, as you all know, Katie and I don't exactly look alike. After I was done drawing her blood, and the lab tech and I got it into the correct vial for the test, he asked me if I was her nurse. Katie burst into laughter...I told him, no, I wasn't a nurse, I was her mother, and he kept telling me he didn't have a code for "mother." I guess on the paperwork they have to write down who drew the blood. Well, finally, after having this conversation that was going around and around, I told him that it wasn't my problem, that if they had had the proper syringes to access her line that her own mother wouldn't have to draw her blood, and we were leaving.

Well, that whole incident must have left some bad vibes, because we got Katie's blood counts in the afternoon. We can definitely tell that she had chemo! Her white count was a very low 1.5, her hemoglobin was a low but acceptable 10, and her platelets were a low but acceptable 156,000. The scary number was her ANC - the number that tells us her ability to fight off infection - on the day we started chemo the number was 2135. Anything over 1,000 is great, between 500 and 1,000 is caution and below 500 is DANGER. Well, Katie's ANC was 195. So, she cannot go to school, the mall, church, restaurants, anywhere with crowds, or around anyone who is sick until her blood counts climb up again. This is all totally to be expected. The problem is that she feels great, looks great, and is EXTREMELY upset to be missing school today. Mike and I just can't take her tears...it is awful. Mike is staying home with her today because I have a hearing this morning, and she needs a parent today. I can just imagine the bribe gift this will take...

Hope everyone has a nice weekend. Ours will be very quiet! Take care.

Michele

Tuesday, April 4, 2006 7:09 PM CDT

Hi, everyone!

Katie and I are sitting here at the computer, and we decided to do this news report together! Today was a good day. Katie stayed in school all day, unlike yesterday. She came home, did some homework, and ate a good dinner (kind of).

She told the funniest story today, and we have to share it with you. One of Katie's buddies is Mari Margaret. Mari Margaret really misses Katie in school. She is also in Ms. McClure's class. Yesterday, Katie only lasted half an hour at school before she had to come home to rest. Mari Margaret went home, and complained to her mom that her back was hurting, her feet were hurting, and her tummy was hurting. She also said she missed Katie. Mari Margaret's mom said, very sympathetically, "Mari Margaret, do you have Katie-itis??" Katie told that story to us, and to her grandmother, and she got a big kick out of it.

After a sad day yesterday, then a wonderful day today, we are reminded to live one day at a time. I tried a case today, Mike enjoyed work today, Erika was on green (she was good at school), and Katie lasted the whole day with a huge smile on her face.

Katie has read all the messages on her guestbook on the website, and she is so glad to see all the fun and loving notes. Except for John David. She thinks you need to see the same psychiatrist as the sleepy dad. So there. She is laughing out loud right now. hahahahahaha!!!!!!!!!!!!!!!!!!!!!!!!! (she typed that)....

Take care everyone.

Michele & Katie

Sunday, April 2, 2006 6:18 AM CDT

We got home on Friday afternoon, and it was a long week. Friday's chemo was uneventful - Katie took a nap this time. The treatments seem to be hitting her hard where it concerns her energy level. She has complained a little bit about her stomach hurting, but with the anti-nausea meds, she hasn't been sick.

Yesterday, Katie had her interview for the IB program at Williams. She was so nervous! It almost made me laugh - here she is facing cancer, taking chemo like it is nothing, and she was nervous about facing a teacher in the IB program. We met with Ms. Barnes, a science teacher, and she was great.

After that, we had to race home to meet a nurse from our home health supply company - Katie has been put on Neupogen to help her bone marrow recover from chemo (the drug increases her white count). During her initial treatment, I had to give Katie a shot every day with Neupogen after chemo. This time, it is much different. We can infuse the Neupogen in her central line - much preferable to a shot. It came in this cool looking baby bottle with a balloon in it. We hook it up, and about half an hour, it is done. No pain at all - Katie loved it.

Katie took a four hour nap after our nurse left, and then she got to go to Kirsten's birthday party. We even went out for dinner. It almost felt like a normal Saturday. The little one and I went shopping together, and she didn't leave my side. Mom and Aunt Sandy left today, and made Erika vow to be good for us, like she was good for them.

Mike's dad is finally out of the hospital, and recovering after his aortic aneurysm surgery. He is doing pretty well, and thanks for all the notes and prayers about his health.

Tomorrow, Katie hopes to go to school, and she hopes to be there all week. We'll see - she has her blood counts done on Thursday, and if they are really low, she may have to stay home. If her counts are low, that means she is susceptible to infection and viruses, and we do NOT want her sick...that would mean an extended hospital stay.

Take care everyone!

Love, Michele

Thursday, March 30, 2006 8:51 AM CST

We are sitting here at the cancer clinic, and Katie is getting her anti-nausea medicine by IV. Yesterday was a good day - still no nausea, and the only side effect so far is some tiredness. I'm tired too, and I haven't gotten chemo - it is just plain exhausting sitting in the clinic all day.

Yesterday, we discussed the future with one of Katie's oncologists, and we have decided to consult with a neuroblastoma specialist in Chicago. She used to be the head of the neuroblastoma group of the Children's Oncology Group, and she is currently a member of NANT (New Approaches to Neuroblastoma Treatment). Hopefully, she will help us decide on a clinical trial to get Katie into. One of the issues will be if Katie has "measurable disease" after two rounds of chemo - if she does not, we will probably just continue on with the cyclo/topo chemo combination.

Also yesterday, Miss Teen Hartsville came to visit the clinic with bunches of toys and candy. She decided to spend her clothing shopping money on gifts for kids with cancer. She was a sweet girl, and Katie got a huge bunny that has a straw hat, named Sunshine. I have a picture, and hopefully will update the website with some pictures from the hat party and our visit with Ms. Teen Hartsville.

We come home tomorrow, thank goodness, and we are hoping that Katie can go to school next week. Erika has been very good for Nanny and Aunt Sandy, and we are so proud of her. She has had a tough time missing Mommy and Sissy, but she is trying her best.

Love. Michele

Tuesday, March 28, 2006 7:10 PM CST

Hi, everyone!

Sorry for the lack of updates. We are having a little trouble accessing the web from the pool house, so I have come into Pat's house to use her computer.

Chemo started yesterday, and it went very well. We were in the clinic from 9:00 a.m. until 2:00 p.m. Katie had a ton of fluids, along with the chemo and her anti-nausea medication. She did great. We played, made a new friend (well, I did, he was a 19 year old boy that Katie wanted NOTHING to do with...I thought he was cool and fun to talk to!) Katie had no nausea, but her tummy hurt a little bit in the evening. We kept on top of the anti-nausea medication, and that was that!

Mike came down and joined us Monday evening so that he could go to the cancer clinic with Katie on Tuesday. I was elsewhere, having absolutely no fun at all. My no fun lasted all day, so I couldn't be with Katie in the clinic. I was very bummed out about it, but Mike reports that Katie had another good day, no nausea. She was sound asleep when I got to the pool house, and tonight she was very quiet. She is missing her friends, her sister (unbelievably) and her house, but we are very comfortable here. We appreciate Pat and Joel so much! And Katie LOVES the cats!

Now for some good news - Katie's bone marrow results are back from Richland Memorial and her bone marrow is clean, at least at the level tested here. The samples were also sent to California to be tested at the molecular level (1 in 1,000,000 cells as opposed to Richland's 1 in 100,000 cells), and we don't have the results of that yet. It is absolutely horrible that her cancer is back, but if it is only that tumor in her arm, we are much relieved.

I woke Katie up on Monday to drive to Columbia by calling her my warrior princess. She is amazing. She doesn't whine, cry, worry, she just gets through it, with a smile on her face.

Thanks for all the wonderful messages on the guestbook, your prayers, and your assistance. Without all of you, we could not get through this.

Love, Michele

Sunday, March 26, 2006 8:44 PM CST

Hi, everyone!

We've had a very nice weekend - Katie's back is feeling much better and she got out and shopped and played and had an awesome time. Beneteau sent a wonderful package to the girls that started the hats rolling, and got her some much needed spending money that literally burned a hole in her pocket.

The hat party was simply amazing. It's hard to describe how Mike and I feel about embarking on this cancer journey again - we are scared, nervous, anxious, sad - every negative emotion you can think of. To be surrounded by so many wonderful, loving people that came to the hat party, or just sent messages that they were there in spirit, well, it meant the world to us. Katie had an absolute blast, and so did Erika. So did we! God gave us each and every one of you for a reason. The tears are flowing, so I need to stop.

The girls are zonked - sound asleep after such a busy day. We are all headed for bed to face a week of chemo and other things....I'm pretty sure sleep will come easily tonight because we have been so blessed by our friends and family. Thank you all again. You have no idea what this day has meant to us.

If I can, I will try to send an e-mail out tomorrow. If you DON'T hear from me, try to check out Katie's website: www.caringbridge.com/sc/katiekrize. If all else fails, call my mother at my house and she will give you an update! Just don't tell her I said this!

Take care, everyone!

Love, Michele

Thursday, March 23, 2006 7:23 PM CST

We had a major computer glitch - yesterday's update went out just a few hours ago - sorry.

Katie continues to have back pain, and now a lot of it (we hope) is from the bone marrow aspirates and biopsies. Today, we met our home health nurse and the home health supply nurse - both very nice. Katie had her dressing changed on her central line and it was a little rough - it is still very fresh and pretty painful. Still, she cried but didn't move a muscle. She is amazing.

We met with the pediatric orthopedist today and her wound from the biopsy is healing nicely. I actually made dinner tonight and we ate as a family - very nice. Katie put herself to bed early though. The pain is pretty bad. She has decided to not go to school tomorrow because she can't pick anything up, and it looks like singing at Arts Alive on Saturday is out. She wants to preserve her energy for the hat party (again, Sunday evening at 5:00 p.m., Kathy Elmore's house at 910 Mohawk - let me know if you are coming).

Take care everyone.

Love, Michele

Wednesday, March 22, 2006 6:00 PM CST

Today was a long day. We got to the hospital right at 6:00 a.m., and we ended up with one of our favorite nurses in the world, Theresa. When Katie was going through treatment the first time, Theresa was a nurse in the oncology clinic. Now, she works in outpatient surgery. It was wonderful to have her care for us. Katie told me on the way in that Pattie was getting a central line today, too. Pattie is the Build-A-Bear we got after her bone biopsy - she is bright green, with dark green shamrocks all over her, and she is wearing a pair of jeans and a t-shirt with shamrocks on it.

Dr. Adkins put Katie's line in today, and Dr. McRedmond did the bone marrow biopsies and aspirates. It was great seeing them both, but not in this situation. Dr. Adkins performed Katie's original surgery to remove her tumor. He managed to save half of her right kidney (it was likely that she was going to lose the whole kidney because of the location of the tumor). He also made Katie turn from an "outie" to an "innie". Her first surgery was abdominal, and we swear he tucked her belly button in. He denies it, of course!

While we were waiting, we got to play with Miss Marolyn. She is the child life therapist in outpatient surgery. Katie kicked our butts in Uno. We think she cheated.

As Katie was being wheeled in, I reminded one of the nurses that Pattie was to have a central line, too (Pattie got to go to surgery as well). After she was finished, I picked Pattie up and guess what - they DID give Pattie a central line! It is SO CUTE.

When Dr. McRedmond talked to me after the bone marrow aspirates, he gave me this news: the only place the mIBG and bone scans are lighting up is Katie's arm. He is hoping that the bone marrows come back clean, meaning we have an isolated tumor. All of your prayers (and ours) must be working!

After surgery, we had to wait around for another x-ray. The central line could have caused a pneumothorax, so they took all the precautions. It turned out fine, and we finally left after 1:00 p.m. Katie was zonked most of the rest of the day. Her back is really, really sore now - from the previous soreness, and now the holes in her back. The central line isn't bothering her at all.

Tomorrow, we see the pediatric orthopedist for a follow up of the bone biopsy, then we have to meet the home health people to learn how to care for her central line. It's been six years since we cared for one - remembering is tough!

Mike's dad has been doing well, and was moved into a regular room today.

Just a reminder: "Hat Party" - 5:00 p.m. Sunday, Kathy Elmore's house (910 Mohawk, Florence).

Love, Michele

Tuesday, March 21, 2006 5:17 PM CST

Hi, everyone.

Yesterday and today, Katie tried to go to school. She made it through a lot of the day, but both times she called and told me that in addition to her arm hurting, her back is now hurting. I took her home for some rest and some good pain medication. We are getting ready right now to go to Columbia. Katie has surgery tomorrow morning (we have to be there at 6:00 a.m.). She'll have bilateral bone marrow biopsies and aspirates, and she will FINALLY get her central line. She will not have to be stuck anymore. Princess thinks that is wonderful, and so do we. Mike doesn't pass out when they access the central line! We'll be home tomorrow afternoon, and I'll let you all know how everything went.

For everyone on this list - Cely Anne, Gena and Kathy are throwing Katie at "Hat Party." I am secretly hoping that if Katie gets a bunch of hats, her hair won't fall out. But that aside, if you can come, please let me know - just respond to this e-mail so we can have a head count.

It is on Sunday, March 26th, at 5:00 p.m. at Kathy Elmore's house in Florence (910 Mohawk, right off Cherokee). There will be hot dogs and snacks. Katie starts chemo on Monday, so this will give us something to look forward to. As for hats, remember, Katie is no longer fond of pink, but likes everything else. If you are coming, I will e-mail you directions.

Take care everyone.

Love, Michele

Sunday, March 19, 2006 4:16 PM CST

Just a quick note - Mike's dad made it through surgery, and he is on the road to recovery. The aortic aneurysm was in his abdomen. Mike spoke with Bob today, and other than being in pain from the incision, he is doing pretty well. We are all breathing a sigh of relief. Mike told me today he feels like our family is being picked on. In church, after communion, I was praying, and Katie leaned over and said to me, "Are you praying for me?" with this cute little grin...of course, I burst into tears. She was so embarrassed!

We spent the day with Katie's godmother, my dear sister Debbie, and it was great. Katie felt wonderful, and had no pain in her arm. We finally managed to convince her to take off the bandages, and the incision looks like it is healing well. Nothing else to report - thank goodness!

Love, Michele

Saturday, March 18, 2006 2:05 PM CST

Hi, everyone.

It's been a long couple of days. Right now, Katie is at a friend's house having a good time, and Erika got to invite her friend Emerald over and Emerald's twin sister, Emily, came along. They are pounding around upstairs right now, just being children - it is wonderful.

Katie's scans went very well, and her "stick" on Friday was great. We need to nominate Ms. Jackie in Nuclear Medicine for an IV of the year award. On Thursday, we met with one of Katie's oncologists. The future is very scary. We can't pin down an exact treatment because there is no exact treatment for relapsed neuroblastoma. We do have a beginning plan, though. The good news is this: the mIBG scan showed uptake ONLY in her arm, she is very healthy right now - great blood counts, all organs working they way they should, she is eating well, and has a great attitude.

On Wednesday, March 22nd, Katie will have bone marrow aspirates and biopies done, and a central line implanted in her chest. This is kind of a semi-permanent IV. The only time she needs to be stuck in the future then will be if the line itself becomes infected. We were very good at making sure that it didn't get infected last time, so hopefully it will be same this time. Katie told me she can do anything - ANYTHING AT ALL - to beat this cancer, as long as she doesn't have to get stuck with needles all the time.

On Monday, March 27th, Katie will start a course of chemotherapy with the drugs cyclophosphamide and topotecan. This is the cyclo/topo cocktail. She will have an infusion every day for five days, and this treatment will be in Columbia. We will not be inpatient for this, but we will be in Columbia, staying at a friends house, so we don't have to go back and forth. Mike will mostly be in Florence, and my mother and her sister are coming to help out with Erika. I don't think Erika understands much of what is happening, but last night, Katie had a long talk with her and asked her not to be jealous of all the time she has to be in the hospital, that it wasn't fun, but that they would have fun together when she got home. It was sweet, and made me cry all over again.

After a round or two of chemo, we may consult with other neuroblastoma specialists around the country about the next step. We will most likely try a phase II clinical trial somewhere, especially if this cancer does not respond to the chemo.

On another note, as I write this, my wonderful father-in-law, Bob Krize, is having emergency surgery on his heart. He has an aortic aneurysm that has grown larger and may be leaking. Mike is a mess - his mother, Alice Ann, passed away suddenly in August 2005, and now Katie has relapsed cancer and his dad is in surgery. Please keep Bob in your prayers as well.

Take care everyone.

Love, Michele
www.caringbridge.com/sc/katiekrize

Wednesday, March 15, 2006 9:36 PM CST

We had a good day today. Nuclear Medicine rescheduled Katie's scan so that she could attend school all day. Feeling normal right now is her biggest blessing. Katie hasn't taken any pain meds for two days. She says it only hurts when she bumps it. The scan itself was uneventful, and she slept through the whole thing. I usually try to look at the screens and see if I can figure anything out, but when I glanced at the screen, I saw it light up at her arm, and I just couldn't force myself to look at the rest of her body in the scan. I almost don't want to know if it has spread. Ignorance is bliss sometimes.

We had to drag Katie to bed - she certainly isn't fatigued by this cancer, in fact, she has way more energy than me. Katie has another scan tomorrow, and then we meet with the oncologists. I probably won't e-mail an update tomorrow night because Katie and I are staying in Columbia for the evening. Katie is staying with Lakin, her best bud, and I am staying at a hotel room paid for by the South Carolina Bar, because I am speaking at a seminar on Friday (along with a bunch of other lawyers and judges - mostly from the Pee Dee - woohoo!) Mike is coming home to be with Erika. The next e-mail will probably be Friday night, if I can find the energy.

Thanks again for all your prayers, e-mails, and support. We couldn't do this without any of you.

Love, Michele

Tuesday, March 14, 2006 7:49 PM CST

Katie's scan went well today - the needle stick was wonderful - Ms. Jackie did a great job. We were in Nuclear Medicine at Richland Memorial, and we have always been treated like gold in that department. Everyone is so nice and accomodating. We had a 2 1/2 hour wait for the scan, so we went to the mall, and found some hats for the future...they are pretty, and made of cotton, so the will feel good on her bald head eventually. If anyone sees a nice, soft hat for a teenager, let me know...by the way, for our old friends and family - Katie is no longer into PINK! She absolutely loves BLUE! No more pink! And no frou-frou frilly stuff for her - it has to be cool, but not a baseball hat. Queen Katie has spoken.

The scan itself was uneventful, but we have no results. This scan today will be repeated tomorrow and Thursday to gage the reaction of the radioactive dye she was injected with. Kind of interesting. Tomorrow they moved the scan to 4:00 p.m. so Katie could go to school all day.

Take care everyone!

Love, Michele

Monday, March 13, 2006 9:41 PM CST

Katie had went to school today, saying she felt fine and was ready to go. She called about lunch time and she was in a lot of pain from her arm, so I took her some ibuprofin and left her at school. By the time I picked her up after chorus rehearsal, she was feeling great. We had a good evening, and even a good laugh. She was doing her homework and couldn't remember how to spell "any" - and this is my "A" student in spelling! We are all under a lot of stress.

Tomorrow Katie has her mIBG scan - it's a special radioactive dye that is injected into her tomorrow, then she has a scan tomorrow, and the same scan is repeated on Wednesday and Thursday. On Thursday, we also meet with the oncologist to discuss a treatment plan. Katie wants to be a part of the meeting, and she feels strongly about a certain type of central line. She wants to be listened to, and she wants a say in her treatment. Things are very different than before, when she wanted nothing to do with "doctor talk." On Friday, Katie will have a bone scan.

I added new pictures to Katie's website, unfortunately, they are GIGANTIC. So, please ignore all my wrinkles and many chins. I will try to figure out how to size them down and then add them again.

Thank you to everyone who has prayed for us, or added us to a prayer list at their church, or with their group. You really don't know how much that means to us.

Take care.

Michele

Saturday, March 11, 2006 6:39 AM CST

I just read over my entry from January 2006, and I can't believe how quickly things can change.

A little over two weeks ago, Katie started complaining that her arm hurt. We kind of blew it off - heck, everything hurts when you are 11 and growing like a weed. I think Katie has grown more in the past year than she had in the past five years combined. She complained for two days and begged to go to the doctor. Our family doctor did an x-ray, and it showed a mass growing out of the bone in her arm. Alarm bells went off.

The next Monday (Feb. 27th), she had an MRI of her arm, and it was read Tuesday by a pediatric orthopedist who said he was "very concerned" and gave us an immediate referral to our previous pediatric oncologists. The nightmare begins. She had a CAT scan, blood work, and a CAT scan assisted needle biopsy that week, and met another pediatric orthopedist. Blood work was great, CAT scan was fine, biopsy grew nothing. At this point, everyone was thiinking it was probably "just" a bone infection - serious, but treatable. However, nothing grew on the cultures.

On Tuesday, Katie had an open biopsy of the mass in her arm. By Friday, the oncologists have confirmed the diagnosis of neuroblastoma again. It was our worst fear.

Katie is ok. Her arm still hurts and she is ticked she has been in pain this long. She is really scared about treatment again but we are trying to focus on the good...more Camp Kemo, more friends in Columbia, etc. Mike and I are devastated. Erika doesn't comprehend (we hope). Our friends and families are in disbelief.

Next week, we have four days of scans to start figuring out staging and if the cancer has spread. The people that know have been so supportive - thank you. On Thursday, we will have an appointment with the oncologists to determine a treatment plan. I'll post more here as I get more information.

In the meantime, we'll take your prayers...it all helps at a time when we feel utterly helpless.

Michele

Saturday, January 21, 2006 11:14 PM CST

I can't sleep, and decided to check up on Katie's website. It seems so long ago when this was a daily ritual. Katie is doing great. She just got her report card, and missed all A's by one point. She still thinks school is a struggle. I think she is brilliant.

Katie has put on weight, and is finally growing in height. She has attitude, also - big time. She was so mean to me the other night, I almost cried. Then later that evening I got a beautiful apology. I just keep reminding myself...hormones, hormones, hormones. She sings in chorus, and plays the clarinet in band, has great friends, and 80% of the time is a pleasure to be around. We are truly blessed (even with that 20% of the time!)

Erika repeated first grade and is doing so well, we don't even worry about last year. She is reading everything she can put her hands on and is above grade level in math. She finally gets it - and she feels great about things.

Mike is working at Beneteau - they build boats, and he is in quality control. He loves it, and is glad to be out of the Air Force. He would have been gone all this spring to the Middle East, so we are very happy about his retirement.

My practice keeps growing and growing. We enjoy Florence, and I'm very glad we landed here. We managed to find a wonderful group of friends, a nice house, and a sweet life.

Katie is featured in the BMT Infonet "Celebrating Life" calendar, and she is Miss April. You can order a calendar at www.bmtinfonet.org.

Hope everyone is doing well...

Love, Michele

Monday, March 21, 2005 9:08 PM CST

Not sure who is going to read this...maybe just Andrew!

Things in our lives are normal...and that is significant because of how abnormal things used to be. We are all doing really well. Let's start with Katie - she is now 10 years old, in 5th grade, and doing reasonably well in school. She is growing, finally, and has some weight on her. The lasting effects of cancer include a few scars on her body, and probably a few on her mind. She wants to be like everyone else now. She sings in her school's chorus, rides horses, and plays soccer. She loves to dance and is always active. She is downright gorgeous, but we try not to comment on that because we don't want to think about boys!

Erika is doing fine. She is happy and healthy. Erika is ADHD, and has a serious learning disability. But I swear, I have never met someone more anxious to learn. She carries around books with her, and tries so hard. She may repeat first grade, but it is not for lack of trying. She's a big girl, too, and wears the same size shoe as Katie.

Mike is doing well. He had some foot surgery in October, and is still recovering. He will retire from the AF in November, and then he will...work at the post office...or go to school...or work at Lowe's...or be a house husband and soccer dad...do you see what I'm doing? He still hasn't made up his mind.

I'm fine. My practice is really picking up, and I enjoy my work. Most days I am thrilled to be a lawyer. But only doing family law can be tiring. I have met a great group of friends in Florence, and Mike and I are very happy that we have decided to retire here and raise our children in this pretty city.

Our puppies are good, and they keep us safe. The neighborhood we live in is really nice. Our families have had some struggles. In December, my beloved Uncle Ken died, and we all miss him so much. I read some journal entry from a few years ago that Erika didn't really want to have anything to do with him - well, that all changed. She gazes at the stars now, missing him. My Aunt Reen's relapsed breast cancer has spread, but she has a good attitude and is pursuing some treatment. And, we almost lost Pop-Pop this summer, but he has bounced back and is doing well.

This evening, I spoke with a journalist who is helping the BMT Infonet with their 2006 Calendar. Katie is going to be a calendar girl for next year! It made me relive some of these memories, so I wanted to update our webpage. If you visit, please add an entry to the guestbook. I think Katie will really enjoy this someday.

Take care, everyone. Our home e-mail address is still mkrize@earthlink.net. Give us an update!

Love, Michele

Friday, August 8, 2003 7:58 AM CDT

It has been WAY too long since I updated this web page!

First of all, Katie is doing great. She just started fourth grade yesterday at McLaurin Elementary School in Florence, South Carolina. Two months ago we moved to Florence, to be closer to my practice. It has been a good move - a little rough at times, but we have made it work.

Mike is in Korea, and has been since November 2002. He came home to help with the move (thank God!) He was home for 30 days and had to return to Korea to finish out his tour there. He will be back in November, spend the next two years at Shaw AFB, then he will retire from the Air Force. The girls miss him terribly - and so do I.

Katie's health has been very good. She has been sick twice this summer with viruses, but nothing to worry about. Her next visit to the oncologist is in September for the whole round of scans and blood work. We only go twice a year now. She isn't growing very much, and food is always a struggle. But she is happy and healthy so we are thrilled.

Erika is fine. She is doing the growing in the family! She is three years younger than Katie, but only weighs about 7 pounds less than Katie, and is practically in the same size shoe. She started kindergarten yesterday and she is thrilled. This morning she said she did not want me to walk her into school (Katie demanded I walk her to class!) It was so cute.

Our puppies are fine and our new house is great. I speak to the first year medical students in a few weeks, and I can honestly tell them we thank God for each day.

If you ever want to get in touch with us, our home e-mail address is mkrize@earthlink.net. Take care everyone!

Love, Michele

Wednesday, September 04, 2002 at 10:42 PM (CDT)

It seems unbelievable that the last time I updated Katie's website was March. So much has happened since then! I'll try to keep it short - Katie finished second grade the week after I graduated from law school. Her last week of school was spent with my mother, who took care of the girls while Mike and I took a cruise to the Bahamas to celebrate no more law school. As soon as I got back, I began studying for the bar exam.

The girls had a great summer. We took a short trip to Florida in June to visit Nanny and Pop-Pop. They went to Wild Waters (a waterpark) and they had an absolute blast. Other than that, Mommy studied and studied and the girls went to day-care. Katie was in a fabulous summer program on the base and she loved it. Both girls attended Camp Happy Days and Katie went again to Camp Kemo. I finally took the bar exam at the end of July (a true nightmare), and Katie started third grade a few days later. Whew!

In June, in a routine visit to the oncologist, one of Katie's test results came back way higher than usual, yet still normal. We repeated the test, and it was back down to normal. It made taking the bar a lot easier to know she was healthy. Katie went to the dentist and they found a cavity in the MIDDLE of one tooth - a molar. She is having a follow up visit to figure out what to do about it. Who knows - it may have been zapped by radiation. She also had a big change in her eyeglass prescription, but no signs of cataracts - more good news (cataracts and tooth problems are both lingering effects of the chemo and radiation Katie received).

Katie already enjoys school. Erika and Mike both have ear infections, and Katie is miserable in bed right now with a high fever, and I'm sure she has one too. Her first reaction to spiking a fever was, "Oh, no - I can't miss school!" She is really my hero.

I will start working again in October. With everyone sick in the house, and Mike possibly leaving for Korea for a year, I don't know how we will cope - but I always remember what my dear sister, friend, and Katie's godmother tells me - leave it to God. And He will come through as always! Take care everyone.

Love, Michele

Monday, March 25, 2002 at 08:39 PM (CST)

Hi, everyone. You may think we have dropped off the face of the earth, but we haven't! It's been a rough couple of weeks, but I think I can finally share what has been going on...

First, of all - everything is fine - NOW. Two weeks ago, everything was not fine.

But let me go back even further...on February 18th, just after I was bragging that none of us had gotten sick for quite awhile, Katie woke me up at 4:00 a.m. with a massive fever - I pulled the thermometer out of her mouth when it hit 104.7 because I didn't want to know how high it really was. She stayed home that day complaining of abdominal pain. The fever never went away. The next day we went to the pediatrician - just a virus. Wednesday night she was still spiking huge fevers, but they were coming less and less frequently. Thursday morning, Katie's temp was normal and she felt tired, but desparate to go to school (she had won Ace of the Week the week before (a good behavior award) and hadn't been to school to collect it!) AND the best part - Erika woke up with a massive fever! To a cancer mom, that is a huge blessing - contagiousness. Well, Erika stayed home several days (6 to be exact!), ended up with a massive ear infection AND Mike and I got very sick! In the meantime, Katie kept running intermittent low grade fevers, had no energy, and was losing weight.

We went back and forth to the pediatrician with Katie - never obvious signs of infection, her blood counts were ok, and we had all her major tests (CAT scan, bone scan, bone marrow aspirate and biopsy, blood work, urine test) scheduled for March 14th and 15th, so we just decided to wait. She still didn't get any better - fever every once in awhile, no appetite, losing weight (any of this sound familiar - like at diagnosis???) We were scared to death. Erika, Mike and I all got better - but not Katie.

The first thing we did on March 14th was bloodwork - and her white count and platelets came back lower than even at her original diagnosis when her bone marrow was 100% diseased. They whisked her into the bone marrow aspirate and biopsy, while Mike and I sat in the waiting room at outpatient surgery and cried our hearts out. There could have been two explanations for what was going on - more cancer (massive bone marrow involvement, too) or a virus. We were praying for the virus, but it just seemed like it was cancer again. One kind of funny thing - a man used his cell phone in the surgery waiting room and I almost beat him up. Well, not really. I just started taking it all out on him. Mike had to calm me down. There are signs everywhere not to use your cell phone - RRRR.

That afternoon, the oncologist went to look at a slide of the aspirate - it was clean. We started to feel marginally better. Then the next day we found out the biopsy was also clean - we felt even better. If there was massive bone marrow involvement, then it would have been obvious. Katie was a trooper through CAT scan, skeletal x-rays (they x-ray her whole skeleton!) and a bone scan. Everyone in the hospital it seemed knew what we were going through - the bone scan tech told me she saw nothing but a little spot on the hip and when I told her that there was a bone marrow biopsy the day before she said, "Yep - that explains it."

Unfortunately, there was no radiologist around to read the scans (funny how then can send me a bill, demand payment immediately, but when I am facing a weekend thinking my daughter has cancer, no radiologist is there to read a scan...hmmm...), so our oncologist went to read the scans himself. He called at 6:00 p.m. on Friday and said he saw nothing - but he wasn't a radiologist. I felt much better.

THEN - Saturday, March 16th, Katie does a complete turnaround health-wise. She insisted on a trip to the zoo to celebrate getting through her tests, and the next day she went golfing with Mike for 9 holes. She also started to eat again. And no fever - whatsoever. This past week, she has felt better and better and last weekend was just a little maniac. Thank God.

And - on Monday, March 22nd we found out that both the CAT scan and bone scans were officially clean (finally read by the radiologist). We are waiting on two things: the bone marrow samples were sent to California to be checked out at the molecular level and the urine test was sent to another lab. When we get those, I'll be 100% sure there is no cancer. Right now, I feel about 95% sure.

I really hate to make this e-mail any longer. Here goes! Mike is fine - here in SC, leaving for Turkey in August for four months (maybe), but being an awesome dad and husband the past few weeks. Erika is great - she has been behaving at school and is talking a blue streak. I'm exhausted from writing two papers in a week and from all this stuff, but so happy my family is ok. Three more weeks of law school, a couple of exams, and then graduation! Woohoo!

Sorry to dump all this at once, but I didn't want to panic everyone. And now it seems there is no reason to panic. Katie belle is fine - happy, healthy and loving her spring break. The girls are VERY excited about Easter and they bought some gorgeous dresses for the occasion. I will take pictures and post them on Katie's website when I get the chance.

Have a wonderful holiday weekend, everyone. Holy Week is very special to us because last Good Friday is the day we got the call that we were chosen to be Erika's parents. Now, another blessing - Katie is still NED. Take care!

Love, Michele

Friday, December 07, 2001 at 08:49 PM (CST)

Not much news - Katie is feeling great and looking great. Her final test results came in from a few weeks ago and she is still NED (no evidence of disease). It was one year ago that she completely finished her treatment for neuroblastoma - we just can't believe it.

I am doing this update because I have finally put new pictures on the website. Check them out - they are Katie's new school picture (just stunning), and pictures from adoption day.

Take care everyone.

Love, Michele

Friday, November 16, 2001 at 10:20 PM (CST)

KATIE'S STILL NED!

Still NED? Who's Ned? NED are the magic three initials we always want to hear - No Evidence of Disease. This past Wednesday, Katie had her scans to make sure the cancer has not come back. We are doing this three times a year now - just in case. Our schedule right now is every other month blood work, urine test, and physical at the oncologist, then two months after that all the scans and a visit to the kidney doctor, also.

Wednesdays scans went well - we actually had a very good and understanding technician at CT who listened to us and followed Katie's directions. Katie fell asleep for both her bone scan and her CAT scan - she is amazing. The stick for the IV was tough as always, but she made it through. There are all new nurses at the cancer clinic and the nurse who stuck Katie this time did it on the first try.

We had some play time in between CAT scan, bone scan, full series of skeletal x-rays, lunch at Nine Medical Park (yum), a necessary visit to the hospital gift shop, and physicals by both the cancer doctor and kidney doctor. Katie has grown both up and out. She is almost four feet tall and fifty pounds, and everyone declared that she looked fabulous. The results we have gotten so far - bloodwork, CAT scan and bone scan are all beautiful. We are waiting on urine and skeletal x-rays but the biggie tests are the ones we already know about.

Dr. Kevin told me that Katie had a clean CAT scan when we were there, and I told Katie. She said, "I don't care," skipped off and went back to painting. She really did care - and was very proud of herself for being NED. Katie was basically mad at me all day because she had to miss school - it was dress as your favorite book character day and she missed all the fun. I'm such a meanie.

I have some great pictures from Erika's adoption day that I am meaning to post on Katie's website. The girls look so awesome together. When I finally get around to it, I'll post them. Mike is still here in SC - he has even been on day shift for the past few weeks because he's been in a class. It's been nice to actually see him. His grandfather died at the end of October and his unit was kind enough to allow him some leave to attend the funeral. The military here at Shaw seems to be business as usual, with heightened security. My school semester ends on Tuesday and my first exam is November 26th, so I have to buckle down and study.

We hope you all have a wonderful Thanksgiving. I know we will.

Love, Michele

Friday, September 14, 2001 at 03:38 PM (CDT)

Hi, everyone. I have struggled all week about sending out this e-mail. I have written it over and over in my head a hundred times. The tragedy of this week's terrorist attack is on par with only one other event in my life, and that was when my daughter was diagnosed with cancer. I keep thinking of the words "unsettled" and "loss of peace of mind." I seem especially angry that the one thing I could count on - being safe in my own country - is now gone. As with everyone on this list and in this country, my thoughts and prayers go out to the friends and family of the people who lost their lives in this vicious, senseless attack. Personally, we have accounted for everyone we can think of both in DC and NY, and we are hoping everyone STAYS safe.

Here in SC, Mike is working every single day and we talk for very short amounts of time. On Tuesday, he literally went to bed fully dressed in his uniform, just waiting for the call that he would be going into work. As he just returned from Saudi, the word is that he will not be one of the first to go - but of course, he may go somewhere anyway. The base itself is on extremely high alert and it is difficult to come and go. We have been trying to keep some normalcy, but the girls know what is going on. Katie has been asking some pretty poignant questions. It didn't help that yesterday, while I entered the courthouse for work, there was a bomb threat. We were evacuated quickly and stood outside for an hour. It was apparently a hoax.

NOW SOME GOOD NEWS!!! Katie had an appointment with her oncologist yesterday. She was sent for a chest x-ray because her yucky cough is unusually yucky, but her lungs were clean. She has no visible signs of infection, her blood counts were great, too, so it is either a virus or just her usual cough. Katie's kidney numbers were even better - they look even more like a normal person's - and her physical exams by both the nurse practitioner and the doctor pronounced her "beautiful and healthy." She especially liked the beautiful part! She is almost four feet tall, and her weight is up another two pounds.

I hope everyone else is doing well. Thanks for all your e-mails about Mike...he is fine, he is here with us (well, a mile away at work!), and we are all safe. Take care.

Love, Michele

Thursday, August 16, 2001 at 09:50 PM (CDT)

Hi, everyone. Things are fine here. Katie's urine test finally came back (they lost the first one and her new doctor didn't think it was necessary to actually do it but I didn't agree - we did another one) and the numbers are still within normal limits. In the meantime, Katie started spiking huge fevers just once a day - at 3:00 a.m., right before school started. That passed, thank goodness, and Katie started 2nd grade at Shaw Heights two weeks ago. Erika started pre-school on the same day.

Katie loves her teacher this year (although no one can quite equal Miss Knepp - who is on this list and was Katie's homebound teacher during her long year of treatment!) The school is under major construction, but the teachers seem to be making the best of it. We went to orientation together and Katie asked me what day it was - when I told her it was Friday she said she was sad. She wanted it to be Sunday so school could start the very next day. I cried dropping her off the first day of school and the other parents looked at me like I was crazy. Seeing her do completely normal things still makes me cry.

Erika loves her pre-school and she actually gets mad when I pick her up too early. The girls act like they have always been sisters, but they are both missing Daddy. Erika started telling people that Daddy is lost - very cute coming from a three year old with those huge brown eyes. He should be home in about two weeks. Yahoo!

I started my third year of law school today. Another yahoo! For all my law school friends on this e-mail, Rick Pierce and Ben Noe say hi - we told Prof. Wilson today that we are all perpetual law students. Yick!

Erika is starting dance class in a few weeks, and Katie will take gymnastics. They are both so excited they can't stand it. Take care everyone.

Love, Michele

Monday, July 16, 2001 at 08:59 PM (CDT)

Hi, everyone. I seem to be managing a monthly update so here goes!

Last week, Katie had her scans again. She endured a bone scan, CAT scan, physicals by both oncologist and kidney doctor, blood tests and urine tests. So far, the results we have are wonderful. Katie still has no sign of cancer. We are waiting on the urine test, which is a big marker for the return of her type of cancer, so I'll breathe easier once that is in.

Katie's scan experience was all right, with the exception of CAT scan. They used an injection machine for the contrast into her IV and it really burned her arm. She cried and cried and the technician was extremely unsympathetic. It was terrible. Otherwise, though, it was fine. Erika went with us on day two and it was pretty wild. Other people were yelling at my children to behave. They thought the lobby of the Cancer Center was their personal playground. Erika thought Katie's doctors were really cool because of the playroom. They painted and made necklaces while we were waiting. Erika can't wait to go back.

We have been swimming and visiting relatives, and eating during the rest of the summer. Katie's weight is up (YEAH!) to 46 pounds, and she grew another centimeter, so we are hoping the radiation didn't damage her growth. Her hair is absolutely gorgeous and people comment on it all the time. The girls are fighting and loving just like sisters, and Erika's transition has been even easier than Katie's. Our only current problem is missing Daddy. Mike left at the end of June for Saudi and all of us are taking it hard. I look at a picture of him and boo-hoo!

Katie heads for another week at Camp Kemo next week and she is very excited. Erika can't go yet - she's too little - so we are going to hang out that week. Katie has forbidden us to do anything fun. We are allowed to go to the pool - ONLY TWICE - and Erika is not allowed to touch any of Katie's stuff or sleep in her bed. So there. The queen has spoken.

Hope you are all having a great summer. We keep in contact with other children with cancer (Riley is doing pretty well, thanks for all of your prayers for him!) and thank God every day for our little miracle. I would love to hear from each and every one of you about your summers!

Take care.

Love, Michele

Sunday, June 17, 2001 at 10:42 PM (CDT)

First of all, Happy Father's Day to everyone. We had a kind of low-key day, but it was fun. Katie is feeling AWESOME. It is such a joy to see her so full of life and happiness. Erika is just as happy and energetic - sometimes more so! We have no schedule, the girls go to bed too late and we sleep in too long. All we do is go to the pool and eat...unfortunately, all Mike does is work.

Mike leaves in a week and a half for Saudi Arabia. It is almost a relief - he has been working so hard here we never see him and it is almost torture to have him so close and to never be able to do anything together. Now he can get the rotation over with, the entire unit can come home and hopefully they will get back to a normal schedule. Apparently, they took too many people to Saudi (half the unit is there now), and didn't leave enough behind. We will miss him a lot. He should return in the beginning of September.

Our trip to Florida was so much fun. Erika completely adores Pop Pop and his golf cough (her words for the golf cart). Nanny is ok, and so is Aunt Sandy, but she can do without Uncle Ken. Katie had a great time, too, but she was obsessed with returning to South Carolina to buy her hamster (that was her birthday present from Mom and Dad). We finally did get the hamster and she is actually pretty cute. Katie named her Dora (after Dora the Explorer on Nickelodeon).

The girls are getting along pretty well. The fight like sisters and love on each other like sisters. If I yell at one, the other one defends, but they are always telling on each other. Erika can definitely take Katie down and I think it has finally encouraged Katie to eat to get some more strength. Whatever works.

So, life in the Krize house continues to be crazy but wonderful. Hope you are all having a great summer!

Love, Michele

Tuesday, May 22, 2001 at 10:27 PM (CDT)

Hi, everyone. I can't believe it has been almost a month since I last sent an update. We have been insanely busy here and I just haven't had time! A month ago we found out that we had a new addition to our family....well, Erika moved in permanently on Sunday, May 20th. So far, so good - Katie is definitely jealous yet happy, and Erika is being a perfect angel. I had an indication as to how far out of control Katie's self-esteem has gotten today. We were talking about her upcoming birthday party, and Katie wanted to know whether we could get a limo to take us to the party. I burst out laughing and asked her who she thought she was, and she replied (and this is no joke): "I'm the queen of the world, of course!" Oh, my.

In the past month, Judi and Brian and Melanie and Anthony got married (both weddings were a blast!), I finished my second year of law school, Mike is working constantly, and Katie fought off a nasty virus. We also had to visit Katie's pediatrician for the first time in more than nineteen months. To say I was a little tense about it was an understatement. It turned out to be a really good visit. Because we are Air Force, and they rotate so frequently, we have a new pediatrician who turns out to be a very nice person. She took her time with us, listened, and then called TWICE to follow-up about what was going on with Katie. Katie fought high fevers and fatigue for a full week, but it finally wore off, just before her doctor said we should test for mono. Whew. Anyway, Katie is back to being Katie and feeling awesome.

Nothing else new - we have a billion things to do this summer and can't wait to get started. Katie is done with school (and finished first grade with honors!), Erika is finished with pre-school this week, then we are going to visit Florida for awhile. The only yucky thing this summer is that Mike has to do a rotation in Saudi Arabia. He leaves on July 1st and returns at the beginning of September. The queen of the world turns 7 on Friday, and is just perfectly thrilled. Katie's next scans and visit to the oncologist are set for July 11th. It seems so far away. Just two weeks after the scans, on July 23rd, Katie gets to spend a week at Camp Kemo again. Erika and I are trying to make some plans for that week, but Katie has forbidden us to do anything fun without her. So she gets to go to camp and have a blast and we get to sit around the house and do nothing (NOT!)

Take care, everyone. Thanks again for always keeping us in your prayers!

Love, Michele

Monday, April 23, 2001 at 02:03 PM (CDT)

Hi, everyone. First the medical news - Katie's bone marrow is clean on the deep level that is tested in California! Yeah! And she continues to feel wonderful and looks even better.

On a more personal level, Katie received her quilt on Friday. It was an amazing gift from a group of amazing people. I may have to fill you in - last year, in February 2000, Katie was featured on the website called Make a Child Smile (www.makeachildsmile.org). There is a group of people who make quilts for the children featured on MACS called Love Quilts to Make a Child Smile. This group cross stitches individual squares then sews them together to make a quilt.

Katie was chosen last year to receive her quilt in the Spring of 2001. I honestly never thought the day would arrive. But it did! Katie's theme for the quilt was "pink" - every stitcher had to use pink in her square. There are stitchers from all over the US and the world - Brazil, Canada, several in SC, Ohio, Indiana, PA, Florida. My mom and I both stitched a square for the quilt, also. Katie also got two matching pillows. Another stitcher made matching cross-stitched towels for both Erika and Katie. The quilt is absolutely stunning, and we have decided to use it on Katie's bed. Each square is beautiful - I would love to show each and every one of you in person how much work and craftsmanship went into it. And love - it is definitely a work of love. Yes, it is on Katie's bed. It is meant to be loved and used and we will do that!

I have posted three pictures on Katie's website of the quilt, and I'll also put them on her Zing album. The pictures don't do it justice, but they do give you an idea how neat it is.

Thank you to each and every stitcher who made this possible! It made Katie feel very, very special.

Love, Michele

Friday, April 13, 2001 at 06:51 PM (CDT)

Hi, everybody! This is Katie.

I have something very special to tell my friends and family. I am going to be a big sister. My new little sister is already big enough to play with, and I have loved her since she was a tiny baby. Her name is Erika, she is three and a half years old, and Mommy and Daddy love her, too. DSS called my mom this afternoon to tell us the good news that we could be Erika's forever family.

We don't know when it will be official, but for now, I get to visit my new little sister and we get to play and have fun. The Easter Bunny brought me an early present and I am very excited. It is a very important weekend for God and Jesus, too - maybe it's God's reminder of His great love. Mommy added that part!

Next I want a baby boy, but Mommy says I have lost my mind. Oh, well. For now, I AM A BIG SISTER!!!! Welcome to our family, Erika!

Love, Katie

Tuesday, April 10, 2001 at 07:33 PM (CDT)

We had a much better day today. Katie was NPO (nothing by mouth) this morning, so she didn't have anything to throw up. She woke up in a GREAT mood - this kid really amazes me. She practically skipped into the clinic for her IV today, barely cried, and her IV was started without much fanfare and on one try. Mike couldn't come today - he worked all night long and even though he offered, I knew he would be exhausted and we would fight all day.

After the IV was started, Katie was examined by the nurse practitioner and then we headed over to the procedure room. Katie was cutting up with the two anesthesia guys and acting like the princess she is, so she had everyone laughing. She was snorting and being silly and pretending to be asleep even before the magic milk (propofal - God's gift to anesthesia) began. Katie falls asleep FAST once it starts, and she was smiling, but then the anesthesia started to burn her arm and she began to cry. The cry faded out quickly and she was asleep. I ran to get a cup of coffee, didn't even finish it, and her nurse practitioner said she was done! The aspirate and biopsy went very well - it wasn't as much work and Katie now doesn't seem as sore as usual.

Waking up wasn't so much fun, though. Katie cried and cried and the only thing I could get out of her was that she was having trouble waking up. We went back to the clinic with Katie crying in the wheelchair the whole way, then I held her in a rocking chair to try to calm her. That was all it took! A few minutes later, she was sitting up, eating peanut butter crackers and drinking grape juice, watching a Mary Kate and Ashley video - all better!

Eventually we got to see Katie's oncologist and he had good news. The bone scan was completely clear. The CAT scan had one funky spot on it - a weird place under her clavicle that he went to see for himself. He then thoroughly examined the spot and has concluded that the CAT scan picture cut through that muscle in a different way this time and it's nothing. It's not in a place where there would be a relapse.

Katie's blood work looked really good, but she has an elevated TSH - a thyroid hormone. They are going to talk to a pediatric endocrinologist and decide what course to take with that. It could be a side effect from radiation. They have also decided to test her stool for parasites and put her on Zantec for the vomiting so we can finally find out what is causing this weird vomiting and diarrhea.

We are waiting on a bunch of results - bone marrow, urine catecholamines (markers that neuroblastoma gives off if it is present in the body), and echocardiogram and EKG. I came home and fell fast asleep - the pollen is just getting to me. Katie, with the two big holes in her hip, wanted to go outside and play with her new Skip-It. She is amazing and wonderful and my little angel. Take care, everyone.

Love, Michele

Monday, April 09, 2001 at 06:33 PM (CDT)

Hi, everyone. We had a rough, long day and to make it worse - we have no results to share. I'm not sure if Katie's doctors are just waiting for tomorrow to see us, or her scans haven't been read yet, but usually we get a call in the early evening with results and we haven't gotten that call yet.

The day started very early, and Katie threw up on the way to the hospital. We aren't sure if it was anxiety or just a lot of stuff dripping from her sinuses, but I was climbing into the back seat with a bag while Mike was trying to negotiate rush hour traffic and Katie was throwing up - oooh, loads of fun. After two sticks, an IV was finally started in the clinic. Katie sobbed her little heart out, this time Mike saw it, and he was pretty green. Then Katie had her injection for bone scan, then we headed to CAT scan - our most favorite place in the world (she said with sarcasm dripping...)

We brought our own juice this time - strawberry kool-aid - and it worked like a charm. Then we sat in the waiting area for two hours. During this time, Katie started having diarrhea, so we were particularly unhappy. I finally got the front desk to call back and next thing you know, Katie was on the table. Then, during the scan, the radiology technician couldn't get Katie's IV to work, so he took it completely apart, left the needle in and put another end on it and it worked fine. The look of panic on Katie's face, though (thinking she would have to get stuck again), was just as painful as a new IV.

After CAT scan, we headed for the bone scan itself - half an hour late, and then they were a little backed up, too, but managed to squeeze us in. Katie fell fast asleep during the bone scan. After the bone scan, we went next door to respiratory care and Katie attempted to do some pulmonary function tests. They have no testing facilities for little ones like Katie so her test results weren't as clear as we had hoped.

After that, Katie got a cute toy from the gift shop and we had a leisurely lunch. Whew. It was a long day. Katie, as usual, was very still for her scans and tried her hardest with the PFTs. We got to see a bunch of people we haven't seen in awhile (Wests and Hornsbys - Shelley says hi!) and we did do a lot of laughing, in between the yucky stuff. Katie and Mike decided that they were both going to act 6 and they fought over Katie's toys and we just generally cute together.

Tomorrow is a physical, blood and urine tests, the bone marrow aspirate (under anesthesia), and EKG and echocardiogram in the afternoon. I'll let you all know the results when we hear them. In the meantime, thank you all so much for your notes and words of encouragement and support. They mean a lot to us.

Love, Michele

Thursday, March 29, 2001 at 08:10 PM (CST)

A year ago today Katie had another birthday - her stem cell birthday. This is Katie’s one year anniversary of her stem cell transplant. I have relived a lot of that day, but mostly I remember what a good day it was. This was it - the last big medical procedure Katie had to endure in her treatment. From that day on, there would be no more chemo, no more radiation, and no more surgery. It was pretty scary. It’s still scary!

The whole process was relatively easy. Katie got a dose of Benadryl - supposed to make her sleepy, it didn’t. She was wearing her Cinderella wig and holding her wand the entire day as if she was the princess, and she was. The beautiful, glistening stem cells went into her bloodstream with no problems. Afterward, she took a wonderful long nap, woke up, and did crossword puzzles with Nanny. It was possibly the easiest day in her transplant experience of any of the days.

Back to now - There have been some funky things going on with Katie’s health. She has had some episodes of vomiting and diarrhea, some weird fevers, but her doctors (and her family!) are convinced that Katie’s new, one-year-old, immune system is just dealing with new things. She may also be having a gall bladder problem, but as her doctor told me last night - it doesn’t sound like cancer, and we can deal with everything else. In the meantime, she feels great, she looks pretty good (she’s losing weight again - food is always a struggle).

So, the big tests are in about a week - April 9th and 10th. It’s going to be a tough two days, but we are sure we’ll have good news. Keep the prayers and good thoughts coming. We appreciate all of your support!

Love, Michele

P.S. You can see our friend Riley as the featured child from South Carolina for the Children's Miracle Network at www.cmn.org. Just go to the pull down menu of states, find South Carolina, and there he is! Riley is doing pretty well, and after his trip to Florida with the Children's Miracle Network, he will start on the latest, most advanced treatment for neuroblastoma - monoclonal antibodies - in New York. Please keep him and all other children and adults with cancer in your thoughts and prayers. Thanks!

Wednesday, March 07, 2001 at 09:33 PM (CST)

I am so sorry about lack of updates recently, but things have been pretty crazy but also pretty great. Katie is feeling great and looking great, and that has been confirmed medically with a trip to the oncologist today. She has battled quite a few viruses in the past month, but they are fleeting and her doctor and I had a talk about them today. Katie's immune system is still pretty new and probably every time she encounters a new germ, her body has a response. Luckily, that response is a good one. On March 29th, it will be one year since Katie had her stem cell transplant. I can't believe how time has flown.

On April 9th and 10th, Katie will have just about every test known to a child with neuroblastoma, including the following: CAT scan, bone scan, bone marrow aspirate, physical, blood and urine tests, EKG, and an echocardiogram. I'll send a reminder before that date, because we could always use those prayers.

Today's bloodwork was fabulous - her kidney function is awesome and her regular blood courts were perfect. The poke itself was a nightmare - the nurse couldn't get the needle in the vein properly and Katie cried her little heart out but she did stay still. She is so brave. Daddy wasn't with us - I am sure he would have passed out cold.

Hope everyone is doing well. I'll try to update more often!

Love, Michele

Monday, February 05, 2001 at 08:17 PM (CST)

We continue to be blessed with great news at the oncologist's office. Today Katie had an appointment with her oncologist and it went very well. Her physical was fine, she gained a whole pound and a half (I guess Mom and Dad constantly torturing Katie about eating has finally paid off), and her blood counts (including kidney numbers) were all phenomenal. We also checked Katie's height and weight on the growth charts (an endocrinologist visit is being discussed), and while she has only grown 2 cm in the past year, she is still right on track with other children who are 6 years and 9 months old. Very exciting news.

We came home to news that another friend of ours (Ezra, in Maine) has relapsed neuroblastoma (again - his second relapse), very devastating and very sobering. Many of you ask if Katie has beaten this cancer - there just isn't an answer to that. Today she is doing great, and that's what we thank God for. Katie's next oncology visit is in a month, then in April she will have all her scans and a bone marrow aspirate. In the meantime, she also has to have an eye exam and a visit to the dentist. Busy times!

Hope everyone is doing well.

Love, Michele

Monday, January 15, 2001 at 03:23 PM (CST)

Hi, everyone. All of Katie's test results are back from her scan day at the beginning of the month and everything looks great. She is still NED (no evidence of disease - the best three letters of the alphabet), and she is in great health. We'll see the oncologists once a month and repeat all tests in April. It was an awesome way to start the new year. Take care everyone.

Love, Michele

Here it is...the last few days from our Hawaii trip. We should have pictures back sometime this week and I will work on getting a few on Katie's website and lots more on Zing.

Saturday, Dec. 30th, 2000

We had a very touristy day today. It was really fun. We got up a little later, I think that we are finally getting used to being in Hawaii and we are over our jet lag. We spent time after breakfast on the beach, just swimming and making Tiggers and Poohs with Katie’s new beach toys. Of course, every time I made a Tigger and a Pooh (don’t be impressed, we had plastic toys to put sand in that made the characters), Katie would seek and destroy. She thought it was hysterical. I think the people from England who were sitting next to us thought we were insane.

After lunch, we got dressed in our best Hawaiian clothes and headed for the Polynesian Culture Center in Laie for a luau and hula show. We had a great time. A bus picked us up from our hotel, and Mike and Katie promptly fell asleep all the way to Laie. I can’t believe they did, because our bus driver - Cousin Kala, talked the ENTIRE way. I learned a lot on that trip, though, especially about the Hawaiian language. Adding to what Donna and her family taught us, I was ready to read any street sign and say the state fish (humuhumunukunukuapua’a if you are interested!) When we got to the center, we went to see an IMAX film about Polynesia and then we got to see one of the little shows (the Samoan) before our luau. The Polynesian Culture Center is on 42 acres, and it is run by Brigham Young University, Hawaii. The students are the dancers in the hula show after dinner. They are from all over Polynesia. The center includes seven different villages, and each one has a demonstration. Because we got there in the late afternoon, we only got to see the show in Samoa, but it was totally worth it. The gentleman from Samoa was awesome - very entertaining and very funny. He made fire with sticks, cracked a coconut, and made some pretty lewd jokes that Katie didn’t get. We also saw another man from Samoa climb a palm tree.

After the show, we went to our luau. There was some entertainment, some singers and hula dancers, and a full luau spread. We all tried the pig - Katie actually liked it, and we even ate purple rolls that were made from tarot root, the same thing that poi is made from. I tried the poi and a bunch of other unique things, but Mike and Katie weren’t too into new things after the purple roll!

After dinner we strolled over to a huge amphitheater and with 1500 other people, we watched an amazing hula show where we had great seats. The show featured hula dancers from all seven of the cultures represented at the center. We really enjoyed the parts where the drummers were featured, the glow-in-the-dark poi balls, the Samoan throwing and twirling sticks that were on fire, and all the beautiful outfits. We enjoyed our evening so much that we bought three videos - one of the Samoan, one of the hula show and one on the center itself. We already watched them since we have been home and they are great!

We all tried to sleep on the way back to the hotel - Mike and Katie were successful again. Those two can sleep anywhere! What another neat day in Hawaii....

Sunday, Dec. 31st, 2000

Well, that last day of 2000...I can’t say I’m sorry it is gone. It was a rough year. We began the year with Katie getting chemo. It was her fourth round of chemo and we were all preparing for her surgery in the upcoming weeks. This year, we were watching the waves on the North Shore of Oahu, hanging out with friends, and relaxing in Hawaii. I’ll take Dec. 31, 2000 over Dec. 31, 1999 any time!

In the morning, Mike announced that he had run out of clothes. How that happened is beyond me, since we practically bought every item of clothing we own. So, we called the Kanetake laundry and they washed some clothes for us - for free! What really happened was that we were supposed to spend some time with Donna and Kenn and their kids and Donna ended up doing our laundry for us. Thanks, again, Donna - you really went above and beyond the call! After our laundry was finished, we headed for the Dole Pineapple Plantation (pretty cool), and then the North Shore to check out the waves. We also had lunch at the most crowded restaurant on Oahu - a burger place where we were lucky to find a seat. It was really good, though. We drove up to the North Shore. The waves were really neat and the kids built Shell Mountain (Christy and Kathy have some experience with Shell Mountain, huh?)

On the way home, we stopped for Shave Ice and it was awesome. Donna and Kenn talked us into having it with ice cream on the bottom, which was really good, but we just couldn’t get the sweet beans. I am usually pretty brave when it comes to trying new things, but eating beans in my ice cream just didn’t go over.

On the way back to our hotel, we stopped at Ala Moana Shopping Center to look around for a bit, and we ended up having an awesome dinner at Bubba Gump Seafood Co. We all had shrimp in one way or another, and we all thoroughly enjoyed it. We got home and believe it or not, we all fell asleep. Well, we kind of dosed - we wanted to get up for the fireworks and go on the beach, but what we actually did was leave the sliding glass doors open, listened to the music and partying from our room, and then watched the fireworks from our hotel balcony. It was still pretty cool, because they were shooting fireworks from a boat docked straight out from our hotel.

Monday, Jan. 1st, 2001

Almost everything on Oahu was closed today, but Donna found out that Sea Life Park was open so we headed there. Sea Life Park is kind of like a very small Sea World - same type of concept. It was our worst weather day, too. Most days we had lots of sun, and we had no rain. Well, this day was very, very windy and later in the afternoon we had rain. But, while we were at Sea Life Park it didn’t rain. We got to watch a sea lion show and a dolphin show, and in between Katie played several times on a pirate ship/playground and we fed the sea lions twice. Katie really enjoyed that part.

On the way back to Honolulu, it started to rain, so we went to the Hickam Base Exchange for some last minute shopping. Then we went back to the hotel and had a late dinner in the fancy restaurant in the hotel. Katie has been enthralled with steak, and they had prime rib for kids and she ate her entire dinner. I don’t know about this kid - first crab legs during chemo, then prime rib...she’s an expensive date! They had a huge fish tank there and Katie wanted to go look. Well, as soon as she got there, one of the fish decided that he was in love. Every time she moved, the fish would move, too. If she walked away, he would swim just fine, but if she was at the glass, he would stay still and just look at her. It was the funniest thing! Everyone was watching in the restaurant.

I took some video of the lobby in the evening (they have hula dancers every evening), and Katie was my "star." She also held the camera for awhile, so we have lots of shots of the beautiful ceiling and carpet. When we got back to the room, she declared that she was never leaving Hawaii. Me neither.

Tuesday, Jan. 2nd, 2001

Well, today is the day we leave. We spent all morning packing and taking the rest of our video of the hotel and surrounding beach. It was very sad. We checked out, then because our flight didn’t leave for eight more hours, we headed to the USS Arizona. That was an amazing experience. Katie was on her best behavior, too. It was so moving to experience that memorial, especially with Mike in tow. The whole memorial, from the museum, to the boat ride to the memorial itself was very somber. I always envisioned Pearl Harbor being huge and wide open, but it really looks just like a wide river. I kept trying to imagine the horror of Dec. 7, 1941. Almost 1200 men died in minutes in that ship.

After the Arizona, we headed to the Kanetakes to say goodbye. I don’t think our trip would have been the same without them. Katie had real playmates and we got to see our friends after so many years. Thanks Donna, Kenn, Kelsie and Kolby - you and the rest of your friends were a real treat.

Our flight home was relatively uneventful. We were an hour late leaving Honolulu, so our connection time in Dallas was short, but we made it. Katie slept the entire way from Honolulu to Dallas, then Mike and I passed out on the short flight from Dallas to Columbia. I was none too impressed with Delta on the way home, again, but that’s a downer and it was such a wonderful trip I don’t want to spoil this narrative.

For a whole year while Katie was in treatment, she dreamt about this trip. Every time something yucky had to happen, we would talk about Hawaii and being on the beach, or dancing the hula. I still vividly remember the night Katie had to be catheterized during transplant. She would lift her head to scream, "Get it out," in complete pain, then turn to me and say, "Now tell me about the hula girls.." It was Katie’s way of getting away from the hurt that was going on. Some people call it imaging - I call it sanity saving. Thanks again to everyone that made this trip happen. It was truly a wonderful experience.



THE END!!

Sunday, January 07, 2001 at 06:33 PM (CST)

Here is the next Hawaii installment. Hope everyone had a great weekend.

Love, Michele
Fourth Day - Friday, Dec. 29th

Finally - we slept in! I think we were all exhausted. We ate some breakfast at the hotel - right in the lobby beside the pool. It was beautiful. Then we went to explore the Hale Koa - the military hotel that happened to be right next door to our hotel. We have decided to return to Hawaii and stay at that hotel, maybe as a celebration of Mike’s retirement in five years. They had a wonderful pool and we kept vowing to return to swim in it, but we never actually made it back. Bummer. We did get to share a shave ice on the beach and it was yummy.

We headed back to the hotel, grabbed our beach stuff, and planned to show Daddy Haneuma Bay. Unfortunately, it was a popular choice that day and we couldn’t get in. So, we turned around, planning to hit the beach at the hotel, when Mike mentioned that Hickam AFB had a beach. So, we went there - and had an awesome afternoon. The beach is right beside the golf course, hence right beside the flightline, so we watched giant 747's and other planes take off all afternoon. Mike even took us on a drive UNDER the flight line while a giant plane was taxiing overhead. It was so cool. Katie and I swam a lot, then we all rented a paddle boat for a little while. The wind was pretty strong, and Mike and I are completely out of shape, but it was still beautiful out in the ocean in our little paddle boat.

We decided to stop at the Base Exchange to buy a belt, and then head for an early dinner, but our plans changed - the BX at Hickam is massive and we just shopped and shopped. Every time we thought we had seen it all, we found another section. Katie called one of the stores "her" BX because it had a bigger toy section than our Sumter Wal-Mart. We ended up having a late dinner at a restaurant in our hotel where you grill your own food. The best thing we can say about that dinner is that Katie ate really well. She absolutely loved cooking her own chicken. In the meantime, Mike and I were too hot standing by the grill and his steak took forever. A child’s perspective is always different, huh? We crashed and fell asleep at the same time as Katie - again - loving the warm weather, and beautiful surroundings.

Saturday, January 06, 2001 at 08:40 PM (CST)

Hi, everyone. I spent the day unpacking, trying to do 12 loads of laundry, and finding all kinds of goodies from our trip. We do have one picture! It was taken at the Polynesian Cultural Center in Laie. I will post it here, but if you want me to e-mail a copy to you, just let me know. Take care!

Love, Michele

Third Day - Thursday, Dec. 28th

Our first full day in Hawaii! We got an early start - 6:00 a.m.! Mike had to get up early to get ready to play golf, and Katie and I were up, too! Kenn and Jerren picked Mike up at 7:30 a.m. to golf, we had McDonald’s for breakfast (of course), and then Katie and I were at the pool at 8:00 a.m. It was pretty cold there, so we hit the beach until about 10:30. Katie didn’t have any beach toys, so we spent the time swimming and building things on the beach with our hands. She claimed to be starving and we headed out into Waikiki looking for a grilled cheese sandwich. We also shopped for some beach things.

When we got back to the hotel, we called Donna and the kids who were actually on their way to pick us up! Donna and Kenn are friends of ours from 10 years ago in Germany. Donna and I worked together (along with Ameli - also on this list - hey girl!) It was awesome to see Donna and Kenn and to meet their two kids - Kelsie and Kolby. The last time we saw Donna she was pregnant with Kelsie. We met up with more of Donna’s friends - two more kids for Katie to play with, and a real adult for me to talk to (Bonny, Lindsay and Lee). After a picnic in at an elementary school (Donna is great at picking spots to eat!) where Katie ate a second lunch, we ended up at Haneuma Bay to swim with the tropical fish. The kids swam right away and played on the beach, while I tried to get a little warmer before trying out the cold bay. It was probably the most beautiful place I have ever seen.

I swam all the way out to the reef and saw the most spectacular fish. I went back into the beach to get Katie and help her look at the fish. We swam out again, I showed Katie one fish, she screamed bloody murder and started to cry. I had to take her back into the beach because she was just sure the next fish we saw would be a shark, ready to eat her. No one could convince Katie that the sharks didn’t come into the bay. We left in the late afternoon and headed to Donna’s for a barbeque, with a few more friends (lots more kids to play with), some great food and drink, and lots of reminiscing.

The guys had played golf at Hickam Air Force Base. The fourth tee was apparently right beside the flightline for both the base and Honolulu International Airport. Mike kept telling me about the jets taxiing past him while he was golfing, and I didn’t get a real feel for it until the next day, when we went out to Hickam’s beach...but that’s tomorrow’s story. Mike and I tried raw fish and octopus. That’s all I have to say about that. Katie remarked the next day (when we saw the same fish on a buffet at the hotel) - "I’m NOT eating that stuff with the hair on it!" The fish had seaweed on it, and she thought it was hair! I laughed for twenty minutes over that one.

Katie never stopped - all day. She just kept going and going. She was the true Energizer bunny all day. She wore out everyone - kids and grown-ups alike. You could feel her excitement about being in Hawaii. It was awesome. We got back to the hotel pretty late, and Katie basically passed out cold in a minute flat. Me, too, but I popped up wide awake at 2:00 a.m. again!

Friday, January 05, 2001 at 08:26 PM (CST)

Hi, everyone. I spoke to Katie's oncologist today - both her bone scan and CAT scan are clear (these are preliminary results, but he sounded very reassuring). We just have to wait on her urine tests and Katie has a hearing test on Monday. Katie has gotten very sensitive to sound, and we discussed the possibility that the chemo has done some nerve damage to her hears, just not to the extent of great hearing loss.

Below is the second installment of our trip to Hawaii. I forgot one person to thank - Jim. Lucy was very happy with her mom and sister, and especially with Jim, Courtney and Jamie. Thanks again, Sharpe Family, for always being there for us and our puppy.

Love, Michele

Second Day - Wed. Dec. 27th

We got up at 4:30 a.m. to get to our 7:00 a.m. flight - and we were staying in a hotel five minutes from the airport. We just didn’t want ANYTHING to go wrong. We ate a little breakfast, then headed for the airport. Our check-in was relatively uneventful to get on our flight, and the agent we spoke with even managed to extend our stay in Hawaii one more day, getting us the same exact flight back, just a day later. [This was to be an omen for the future - the connecting flight we originally had was eventually CANCELED!!!] Poor Katie threw up waiting for our flight to leave - after all the craziness of the day before and the early time getting up, she just couldn’t keep her apple down that she had for breakfast. But we are throw-up pros - we cleaned up, she felt better and she was ready to go!

We were told the day before that there were absolutely no seats to Atlanta out of Columbia that day - our flight had at least 40 empty seats (I counted). We got to Atlanta with an almost four hour layover. There is a train in the airport, and we rode it to each and every terminal - we shopped, ate, watched airplanes, did our nails...anything to keep busy. It was actually a very pleasant morning.

Our flight to Honolulu was late leaving - about an hour, but we were on-time with the arrival. Katie slept for quite a bit of the flight, Mike slept a little, and I didn’t sleep at all. They fed us twice, which was good because we were on that plane for about nine hours. Katie is such an awesome traveler, though. She never got cranky and as long as we entertained her, she was fine. She loved the headphones and jammed whenever she wasn’t sleeping. We had the very middle of a big plane - luckily Katie didn’t have to potty much! She loved the airplane toilet though and wanted to know if she could flush several times.

We were cold all the way there - winter coats and everything. When we finally arrived in Honolulu, it was in the balmy 70's - the sun was setting, and it was gorgeous. We were met with some beautiful purple and white lei’s and our luggage arrived intact. We took a shuttle to Alamo and were pleasantly surprised by how wonderful the people were to us. First, our tour operator told us that Alamo refused to extend us a day and just to hold the car hostage. But, the girl who helped us extended the car anyway, upgraded us to a full-size and gave Katie gobs of candy.

We drove immediately to the first McDonald’s we could find and chowed down. It was kind of funny - our first hour in Hawaii and we are already at a McDonald’s. Katie was in heaven. We made it to our hotel and we were so impressed - it was gorgeous, right on the beach (the Outrigger Reef on the Beach). AND - best of all - we didn't even need to stop at a McDonald's - the hotel had a McDonald's RIGHT ACROSS THE STREET. The Make-a-Wish people really know how to pick hotels!!! Katie, who claimed at McDonald’s to be too exhausted to even walk to the car after dinner, got to the hotel and demanded that we go swimming. Donna, our friend in Honolulu, called as soon as we got into our room (14th floor, private balcony, partial view of the beach - woohoo!) and made arrangements for her husband and his friends to take Mike golfing the next day. So, Mike stayed in the room getting his golf gear ready while I took the rugrat swimming at 9:00 p.m. (it was 1:00 a.m. to me!) It was pretty cold in the pool, so we took a quick walk on the beach. We finally hit the bed at about 10:30 p.m. I woke up at 2:00 a.m. ready to go - it was about 7:00 a.m. to me and I clearly hadn’t adjusted!

Installment three will hopefully be soon....

Thursday, January 04, 2001 at 08:58 PM (CST)

Aloha!

Hi, everyone! We are home, safe and sound...and we had quite an adventure. To make it short and sweet, Hawaii was awesome! We had a rough start - we left a day later than we planned thanks to Delta, but our tour operator managed to extend our stay by a day, so we didn't miss any Hawaii time. Mike golfed, we got to spend time with the Kanetakes and made some new friends, too, and we swam at the beach and the pool every single day. It was warm, beautiful, and we felt like a normal family on vacation. I am going to send out thank-yous to all the people who helped make this happen - but the list includes Carolina Sunshine (SC's Make-a-Wish charity), Mary Watts (our local travel agent), Classic Custom Vacations (who planned the whole thing), Bruce Dyer (the guy from Carolina Sunshine who arranged it), our parents for helping with expenses, our friends Kenn, Donna, Kelsie and Kolby Kanetake who made the trip extra special in Hawaii, Alamo (for upgrading our car and extending the time we had it no charge), and the Outrigger Reef on the Beach (for being a great hotel with a superb staff).

We got home yesterday afternoon, exhausted - except for Katie. Her energy is back to being boundless - yahoo! Today we spent the day at Richland Memorial. Katie had a CAT scan, bone scan, physical, and an appointment with her nephrologist. We don't have many results, but what we do have is very encouraging. We don't have to see her kidney doctor for another three months. Every single test result is back in normal limits, and she almost has perfectly functioning kidneys. Her doctor told us he would never have predicted this outcome and that he was practically certain Katie was heading for renal failure. She is really a miracle.

Since I could write for days and days about our trip, I am going to just send along some notes from each day as we remember them. We took almost 7 rolls of film, and I'll get that developed soon and post pictures. Hope you all had a wonderful new year - we certainly did!

Love, Michele

First Day - Tuesday - Dec. 26th

Well, our first day was a bust. We got to the Columbia Airport two hours before our flight, only to walk in and find out that the flight to Atlanta had been canceled. We waited in line forever and then Delta tried to find a way to get us to Atlanta. Their solution was to send us to Augusta to catch a flight leaving in an hour. Needless to say, we didn’t make that flight - the Augusta airport was 90 miles away! We were pretty mad - in fact, Mike and I were fighting a lot. When we got to Augusta, the plane was taking off, and we were stuck. We decided to take a breather, get some lunch, and hope that the Augusta people could help us. After lunch, Katie started writing in her journal: "Today Mommy and Daddy fighted....I stayed out of it." It made us laugh so hard that we started to have a good time. The Augusta folks at Delta managed to get us on a flight from Columbia to Atlanta, then Atlanta to Honolulu the next day, so we drove all the way back to Columbia and spent the night in a hotel next to the airport, since I had insisted on the earliest flight out of Columbia to avoid those kinds of problems.
We never did get an explanation about why our flight was canceled. Instead, we got a lot of ugliness from the Columbia Delta people. We had to confront them the next morning about our nightmare day...

Saturday, December 23, 2000 at 10:03 PM (CST)

Hi, everyone. We had a very Christmasy day today! We went to see the Nutcracker - very well done by the Columbia City Ballet, and we went to see the lights at Riverbanks Zoo in the freezing cold. And I'm not kidding - it was about 32 degrees when we got to the zoo! It was so refreshing!

It made me very emotional to be at the Nutcracker today. Last year we had free tickets from the Cancer Clinic that we couldn't use because Katie's counts were so low from chemo - no crowds. Today we sat together, holding hands, happier than happy to just be there.

I am posting three new pictures to the website. Also, I am putting those three pictures as well as 7 others on Katie's Zing album. The website pictures are from the McEntire Pilot for a Day, and the ones on Zing include two pictures from Halloween.

A lot of people are more eloquent than me in describing the meaning of Christmas. I just look at Katie, see the hand of God, and know what it is all about. We love you all - thank you so much for everything this past fourteen months - have a wonderful Christmas. We will post after Hawaii! We return on January 2nd, and then Katie has her major scans (CAT scan, bone scan, physical) on January 4th.

MERRY, MERRY CHRISTMAS AND HAPPY, HAPPY NEW YEAR!!!!

Love, Michele

Thursday, December 21, 2000 at 11:00 PM (CST)

Five more days until Hawaii! Katie is still awake at 11:00 p.m., so excited she can't sleep. Katie had a doctor's appointment today - got the all clear - her coughing and stuffy nose are all upper respiratory and we are going to try Claritin this time and see what happens. Her blood counts were amazingly good, and her kidney function is better than it has been since before transplant. I really can't ask for anything more for Christmas.

We got back from Florida late last night. Our first day there was a balmy 85 degrees, our last day there a downright cold 38 degrees - unbelievable! We came home to siding ripped off our house and all of our lawn furniture in the back strewn over the yard - must have been some big storms. We still managed to swim in Florida (thank goodness for indoor pools), and we got to hang out with our family, see some wonderful Christmas lights, eat some good ice cream, and Mike got to golf in freezing weather.

OH! The Pilot for a Day at McEntire was an absolute blast. We had so much fun. We got to spend time with both the Air Force (they have F-16s there), as well as the Army helicopter people. Katie got her own flight suit and a flight bag filled with tons of goodies. The best part - everyone was so nice - so friendly - and genuinely good to us. There was even a tiny puppy there, being babysat by one of the people who worked there. Of course, this was Katie's favorite part! One of our escorts said, "A $28 million airplane, and all she'll remember is that darn dog!" No - really - she loved it all. I have some good pictures and I will post them to Katie's website and Zing album when I get a chance.

Have a wonderful weekend everyone!

Love, Michele

Thursday, December 14, 2000 at 10:42 PM (CST)

Hey, everyone. We are heading to Florida tomorrow after a really fun thing - Katie gets to be "pilot for a day" at McEntire Air National Guard base. She is hoping and praying for a pink flight suit after the coordinator asked her for her size!

Katie has been battling the South Carolina Crud, along with me. I have had it since before Thanksgiving. Katie missed a day of school this week because of the crud. It is a virus, so there is nothing to do but treat the symptoms. Otherwise, she is doing great. Well, her eating has fallen off AGAIN - she is back to her weight at diagnosis - a slim 43 pounds and her face is looking thin again, you can feel her ribs. Mike and I are both tired of the constant begging, pleading, and yelling to get Katie to eat. It may be a control issue, or the child just doesn't want to eat. It just makes me shake my head to see the word "anorexic" written in her medical records!

Hope everyone isn't getting too stressed this time of year. We are enjoying everyone's cards and newsletters and as soon as Mike is on leave (starting tomorrow), we'll be having some major family time. Last year on this date, I was raving about Katie's new website having more than 400 hits. Well, it is now up to 6,000! Amazing.

One more thing - two of our dear friends became angels this past week after battling cancer. Jeananne and Rhett both touched our hearts and we hope for peace for both of them and their families.

Take care everyone!

Love, Michele

Thursday, December 07, 2000 at 09:40 PM (CST)

This is it! I can't believe it....you are all scratching your heads, going, huh? This is the last day of cancer treatment! This evening, Katie took her last dose of accutane - the very last thing we are doing to strike at her cancer. I never thought this day would come. It has been fourteen months and six days since Katie was diagnosed with cancer. Today, Katie went to school and this evening sang in her first Christmas concert with her first grade friends. I cried watching her do just a normal kid thing. It's a little overwhelming, and very scary to start this next phase. At the same time, WE ARE SO PSYCHED!!!

Oh yeah, and 19 days until Hawaii, and my last exam is tomorrow, and Mike is going on leave next week for 3 weeks so we can actually spend time as a family, and we are going to Florida to visit my parents as soon as Katie is done with school, and we are going to bake cookies, and we are going to see Rugrats in Paris, and we are going to see the lights at Riverbanks Zoo.....LIFE IS GOOD. Hope it's good for you, too. Have a wonderful holiday season. I'll send more updates as soon as I'm done with school. Katie looks and feels awesome which of course, is my perfect Christmas present.

Take care everyone.

Love, Michele

Sunday, November 26, 2000 at 08:05 PM (CST)

Hello, everyone. I hope you had a very happy Thanksgiving holiday. We sure did! The day before Thanksgiving we finally got the absolute last test result from Katie's scans in the beginning of October. Katie is completely clear of cancer! Yahoo! We had much to be thankful for this year. Nanny and Pop-Pop were here along with Aunt Sandy and Uncle Ken. Katie and Lucy were in heaven with so much attention.

Katie was the flower girl in her godmother's wedding this weekend and it was such a wonderful time. The whole wedding sparkled, and not just because my girl was wearing a gold ballgown (and looked like a complete princess). My dear friend, my parent's other daughter, my aunt and uncle's other niece, was the prettiest bride I have ever seen and we are going to miss her so much. She deserves every bit of happiness in the world. And her new husband is one lucky guy! Katie danced her little heart out - people at the wedding were calling her "Soul Train."

While at the wedding, Debbie's aunt and uncle (Tab and Mary) prayed over Katie so that her cancer never comes back. It was so touching. God has placed some very powerful people in our lives to make sure we stay connected with Him. And we are!

Now to studying and preparing for exams...and Hawaii! Hope you all have a great time getting ready for Christmas. This is such a special time of year, but every day is a special day with our girl. Take care everyone!

Love, Michele

Sunday, November 12, 2000 at 10:09 PM (CST)

I just noticed that it has been more than a week since I sent an update about Katie. She is doing fine! Physically, her cough is nasty again and she isn't doing very well with food. Her weight is down again - she eats pretty well, but she is definitely more active. We go to our new park on base almost every day and she has been outside playing in our back yard with Lucy a lot. Katie even wore Daddy out yesterday when they spent the day together while I studied. It was pretty funny.

Lucy had some surgery (no puppies for this puppy) and she recovered just fine. Katie, of course, was Lucy's nurse and wanted to hug and love on her constantly. Lucy was pretty sick of Katie after a while. Katie's interims came home Friday and she is still doing very well in school. You couldn't tell from our homework drama, though. I think we have a little perfectionist who assumes she will be able to read the same books as Mommy now, instead of learning how to read one step at a time.

Hope you are all looking forward to the holidays. I know we are. This is the last full week of school for me, then exams start after Thanksgiving. Oh, and the best news of all - 44 DAYS UNTIL HAWAII!! Woohoo! We can't wait....

Have a great week everyone.

Love, Michele

Friday, November 03, 2000 at 04:02 PM (CST)

Hi, everyone. We had a little scare - Katie's kidney doctor thought he heard some pneumonia in her lungs, so she had an x-ray. We just found out that her lungs are clear, but they are still worried about some bacteria, so she is going on some antibiotics. She feels pretty good but has a nasty cough. The best news is that we don't have to see the nephrologist for two whole months!! We have gone from every other week to every other month...yahoo.

There are new pictures on the website! Check them out - they are all pretty recent. Have a great weekend everyone.

Love, Michele

Tuesday, October 31, 2000 at 09:58 PM (CST)

Hi, everyone. Our little one was a teeny-bopper this year - she wore a poodle skirt and the works inspired by Mary Katie and Ashley Olsen. We have a huge stash of candy and had a lot of fun with Michelle T-K who gave out candy while we hit every house in our neighborhood.

A year ago, we were preparing for round 2 of chemo. The shock of Katie's diagnosis had worn off and we were beginning to live the life of a family in the midst of cancer treatment. This is just a portion of what I wrote last year: "Her hair is slowly coming out, but I am glad she got a hair cut. It looks really cute. Last night, while we were driving to a Halloween party, she got really quiet. We turned around and saw her pulling her own hair out and making a ball of it, just having a blast."

A year later, Katie's hair looks remarkably similar to last year's, except it isn't falling out. Katie has incredibly soft, gorgeous, big loopy curls. All I have to do is wash it and use a pick on it and she has a beautiful hair-do. Last year, Buffy had given Katie her first and only haircut when her hair started falling out and she had a pretty little cap of hair. But what a difference a year makes. Things are good today, thank God.

One more thing! Katie was also featured in our base newspaper after the air show last weekend. I'll scan that photo in soon and let y'all know when I put it on her website. Take care everyone.

Love, Michele

Friday, October 27, 2000 at 02:17 PM (CDT)

Hi, everyone. Sorry it's been so long. Four weeks until law school exams, doctor's appointments, LIFE...well, things have been crazy - but good. Today was Katie's last appointment with Dr. Godder, her BMT doctor. It was a good visit - on Katie's part because there were no sticks and on our part because Katie is doing so well. I really have no more news! Isn't that great! Katie looks great, feels great and is doing really well in school. We have played at the new park on base almost every day this week (well, Katie played and I studied). Her energy is almost back to 100%. There are some lingering concerns about her kidneys, her weak immune system, but over all everything is good.

The next two months are going to be pretty crazy, so please forgive me if I don't do many updates. If you need Katie news before I get around to it, just e-mail me! November is filled with baby and wedding showers, weddings, Thanksgiving, then December is exams, Christmas and YEAH!! Hawaii. I dream about Hawaii almost every night. We leave the day after Christmas. That's about as much planning as I feel like doing for the future. Dr. Godder gave us the biggest compliment today - she told us she wasn't worried about us because we had learned how to live each day and savor each moment. That felt great. Take care everyone.

Love, Michele

P.S. Happy Birthday Jeffrey and Erika! We love you both.

Saturday, October 21, 2000 at 10:42 AM (CDT)

We had a great time at our "private" Thunderbirds show yesterday! Katie was featured on the front page of The Item - our local Sumter, SC paper. I scanned it and added it to the pictures on this webpage, so check it out! I am behind Katie holding Caitlin Netherton - a friend of ours (I am wearing sunglasses.) Take care.

Love, Michele

Thursday, October 19, 2000 at 06:46 PM (CDT)

Hi, everyone. We are having a very busy week, but it has been a good one, too. Sunday night, Katie went to the fair AGAIN with Daddy and practically all of Monika's family. They got home very late and it was agony to get up for school the next day! On Monday, Katie had her first cavity filled. It was not fun and we found out she has to have a mini root canal on her big cavity. It is getting painful, too, so it really needs to be done. On Tuesday we got to spend some time with the wonderful Hornsby family and that was great - another late night, though! Yesterday, Katie had a visit with her oncologist and a sinus CAT scan, ordered by her BMT doctor. We don't have the results of the sinus CAT scan yet, but we do have some more news on the check-for-cancer tests - the urine markers came back very, very low (great news) - in fact, her doctor said that they were probably lower than his! He doesn't want to see her for another month. The only test we are waiting on is the one from California. Katie's bone marrow is sent to a lab in Los Angeles for a very microscopic look. Those results should be in in the next two weeks - the bone marrow result from our lab was negative - more wonderful news!

Tomorrow, Katie will get the chance to meet the Thunderbirds crew up close and then spend a good part of the weekend with Godmommy. That's a good thing because with this schedule, my schoolwork has started to seriously slide! Thank you to everyone who has mentioned that Riley is being included in prayers and good thoughts. The cancer is back in his bone marrow, but he is feeling good and his dad told me they are planning to fight it as hard as they can.

Hope you all have a great weekend.

Love, Michele

Thursday, October 12, 2000 at 11:10 PM (CDT)

This isn't really a Katie update, it's a Riley update. Yesterday, our little hero, our inspiration, was operated on because his cancer has probably relapsed. Riley made it through surgery to his head, of all things, and is already back in a regular room on the cancer floor. Riley and his family have been such an incredible source of support to us, that I just wanted to ask you all to keep him in your prayers as well. Riley just celebrated three years out of BMT.

Many people have asked if Katie is in remission. Well, it's a difficult word to use for all of us in this fight. As of today, the doctors can't find one cancer cell in her little body. But as of tomorrow, that one cell they didn't find could begin to multiply. It takes my breath away sometimes.

Riley and I made a half-hearted attempt at a game of Tetris on a Gameboy, but he was more interested in the movie Hook. We also laughed a little. He looks amazing and is feeling pretty good. We think you are awesome, Riley. Katie gave one of her dolls a central line tonight in your honor (although she did put it in the doll's head - we had to explain that was NOT where they put your line!!!)

Take care, everyone.

Love, Michele

Wednesday, October 11, 2000 at 07:51 PM (CDT)

Today we celebrated our fourth Gotcha Day - a very significant day in our lives. This is the anniversary of the day Katie moved in with us. Katie insists it his "her" day - she is the only one who got a present - but it really is "our" day. A year ago, we were ten days past Katie's cancer diagnosis, Katie was an inpatient and receiving another dose of chemo. Her wonderful nurse, Shannon (now a member of this list!) brought us a cake in celebration. Mike and I desparately wanted another Gotcha Day - another hundred Gotcha Days - and we got our wish.

Gotcha Day is both happy and sad - Monika and Greg had to let go of a little girl they had nursed through so much anguish at the beginning of her life and Mike and I were finally able to resolve the gaping hole in our life without children. The past four years have been such a gift from God, I just can't explain it. I just read over the update I sent a year ago - we were still in shock about the diagnosis, but already feeling the outpouring of love and prayers that had developed.

Each day is a little celebration in our family. Hope it is in yours, too. Take care.

Love, Michele

Tuesday, October 10, 2000 at 05:35 AM (CDT)

Just a real quick note - Katie's bone marrow aspirate and biopsy went fine yesterday. She had to be stuck twice to get a good IV line, but was a real trooper and didn't cry a bit. Daddy almost fainted but we just slapped him around a little bit (only kidding! - about the slapping part!) The nurse practitioner numbed Katie up so much that we were able to go to the fair and really enjoy ourselves. Katie started to hurt pretty badly at about 6:00 p.m., so we raced home to get some rest. Now she is walking very stiffly and is going to stay home from school again to heal a little more. Katie's bones are so strong that taking one of those samples from her hips causes a lot of pain afterward.

We should get the results in about a week. Take care everyone.

Love, Michele

Thursday, October 05, 2000 at 07:37 PM (CDT)

NED!! NED!!

Are you all saying - Ned? Who is Ned? Well, NED is the acronym we all wait to hear...No Evidence of Disease. With two out of four results in, that is what we heard from Katie's doctor today. Both CAT Scan and Bone Scan are all clear! We are so thrilled.

The day was long - of course, we got up late, but Katie was awesome as always. She was so brave for the IV insertion this morning (except she complained she missed her central line!), and then she slept through the entire bone scan, and was silly during her CAT scan. We had more problems with CAT scan, of course, and I ended up going to the cafeteria to buy Katie some juice she could actually swallow. I tried the juice they put her contrast in the first time and it was so nasty, I couldn't even swallow it. And they expected Katie to drink 12 ounces of the stuff! I just don't understand why we get such horrible treatment at CAT scan. The tech herself was very nice, and the scan was pretty quick.

So, we wait for a few more results, like urine catecholamines (neuroblastoma releases a distinctive substance in the urine - these levels are tested frequently - at diagnosis Katie's numbers were in the 120's and normals are in the 20's - last time she was tested she was in single digits), and on Monday she has a bone marrow aspirate and biopsy.

On Saturday we are walking in the Walk for Life to support breast cancer research in honor of Aunt Reen. My friend Jamie sent me an article that hints at a future of a cure for neuroblastoma - a gene has been identified that may contribute to the malignancy. This is the link, in case any of you are interested:

Scientists Find Child Cancer Treatment Target
http://dailynews.yahoo.com/h/nm/20001004/hl/cancer_36.html

Hope you all have a wonderful weekend. We know we will!

Love, Michele

Monday, October 02, 2000 at 07:57 PM (CDT)

Hi, everyone. Just a quick note to share that we had a great time at Carowinds. The two girls were wide open the whole day, then when we got in the car to leave, they were asleep by the time we left the parking lot. We rode every ride we could fit them on, probably twice, and ate tons of junk. The weather was great, too.

Katie's CAT scan, bone scan, and physical are set for Thursday. These are the quarterly scans that will check for relapse. I am not nervous yet, but I have been thinking about them a lot. I know you all never stop sending good thoughts and prayers, but this is an extra special time. We'll let you know how everything turns out.

Love, Michele

Friday, September 29, 2000 at 03:57 PM (CDT)

While I always consider October 1, 1999 to be the date of Katie's diagnosis, the day falls on a Sunday this year, and that doesn't exactly cut it. It seems the day of the week is significant. This past week, and even this past month, we have been reliving a year ago with excrutiating detail. I have been trying and trying to find some words to convey to all of you what this past year has meant to us, but they are failing me now. A year ago on this day, we got the official diagnosis. It changed our lives forever. I could go on and on, but let me tell you about yesterday.

A year ago yesterday, we heard the word cancer for the first time. It was an agonizingly long day, starting off with a trip to Katie's regular pediatrician - well actually, her nurse practitioner, who finally found a mass in her abdomen. Then a trip to the Richland ER, and we met Dr. Reddy, the pediatric surgeon who said, "You don't need me, you need an oncologist." Then we met Dr. Woods. Dr. Woods looked me straight in the eye and said that he could just tell I knew something was drastically wrong. And he was right. He is the first one who mentioned neuroblastoma. This was at about 5:15 p.m. a year ago. A year later, exactly at 5:15 p.m., I was watching my beautiful little girl running (yes, running!) with her little puppy around a gorgeous lake in the pure bright sunshine. I took a mental picture that I will never forget. The joy of that one moment has eased the pain of this past year and the fear of the future.

So, to celebrate this anniversary, we are going to Carowinds with the tickets we won at Family Weekend. So many wonderful things can be related back to that horrible day a year ago. Do we wish it never happened? Of course. But have we thrived because of it? Yes! I am so proud to be Katie-belle's mom, and I want to thank each and every one of you for your unfailing support, prayers, love, gifts and thoughts. This update is more than just news to each of you, it is a journal of Katie's progress, and I hope a love letter to her when she is older. Have a great weekend, everyone. I know we will.

Love, Michele

Sunday, September 24, 2000 at 08:47 PM (CDT)

Hi, everyone. Haven't sent out an update in ages, and I'm practicing avoidance of school again, so I thought I would send one out. Well, no news is good news - Katie feels good and looks even better. Her hair is absolutely gorgeous, she isn't losing weight, and her energy is way up. She is now eating all on her own - she hasn't had Megace in more than two weeks, and is still eating regular meals and snacks. She spent the night with Lakin last night and they had a great time. Next weekend Mike and I are taking them to Carowinds - ought to be an interesting experience!!

Katie's got an appointment with her BMT doctor this week, and then next week she has an appointment with her kidney doctor, as well as her major scan day (October 5th). We are all a little nervous about it (first scans without the central line and all...) but we keep pretty busy. Katie's last blood counts were absolutely amazing. It is clear that her new bone marrow is working like a charm. Also, her immune system was tested and it came back in the perfectly normal range. Some other parents from Katie's school told me that this year it seems like everyone is sick, so Katie is just normal. Yeah, right!

Mike and I volunteered at Katie's school store last week - it was pure madness but lots of fun. Then - guess what we found in her backpack - two BOYS phone numbers!!! I can't believe this!

I am fighting some sinus thing and praying that Katie doesn't pick it up. Otherwise, Mike and I are fine. He has been placed on second shift - we aren't too happy, but it could be worse - he could be away again! Have a good week, everyone.

Love, Michele

Saturday, September 16, 2000 at 08:25 AM (CDT)

Just a short note - Mike is home, Katie is feeling good. Katie's pneumonia has cleared and the dentist wouldn't touch her until he talked to her oncologist (done, we have another appointment on October 16th). Katie and I both made it to an entire week of school - a huge accomplishment for both of us. The week wasn't without drama, though - yesterday, Katie locked me out of the house on the way to school. I had the dog, but no keys. Luckily, I managed to find someone at the housing office to come to the house and let me in. Sometimes it is good to live on a military base. Have a great weekend everyone.

Love, Michele

Sunday, September 10, 2000 at 08:05 PM (CDT)

Hi, everyone. We had a wild and wonderful weekend, even though we missed Mike a lot. He would have absolutely loved it at Family Weekend with the cancer clinic. The highlights: we shared a cabin with Pam Gainey and her family. That includes her grandparents (we already know and love Emma Lee and I became a huge fan of Billy's when he got me coffee every morning), and her three sisters. So, I shared a cabin with five girls under the age of 12 (specifically 12, 11, 8, 7, and 6). It was pure madness and pure fun. The rest of the families there were also lots of fun. I line danced until I almost fell down. We ate s'mores around a campfire, went on a hayride, decorated a platter from Mad Platter, went swimming, chatted with other families, ate so much food we both gained weight, and laughed a lot and cried a little bit.

The best part of the weekend, at least for Katie, was the door prize drawings. The prizes included dinner at all kinds of restaurants, and fun things to do. Well, Katie managed to pick up four tickets to Carowinds as well as a skating party at Red Wing Rollerway in Columbia. She was totally psyched. I told everyone who ran the family weekend that I knew they hated me, first for sticking me in that cabin with those giggly girls and then for subjecting me to roller skating and Carowinds! Katie passed out cold tonight at 7:00 p.m. but really had tons of energy this weekend. She was literally running around - something I haven't seen in a long time. Pneumonia??? Nah.....

Tomorrow Katie gets to see a dentist for the first time since before diagnosis. Oh! The other big thing this weekend! She lost another tooth. The big tooth has already come in behind the baby tooth, prompting my call to the dentist. Katie also has a cavity in one of her back teeth. All of the sugary medicines (along with the sugary food she prefers now), along with chemo and radiation, have done a number on her teeth.

Lucy, by the way, had a wonderful time with her puppy brother and sister and her doggy mother. The runt of the litter, as usual, had to try to be superior and pounced on all of them. Thanks again for watching her, Jim.

Ok, one more thing - Riley just passed his three year mark from BMT - a huge milestone. We are so proud to know the Wests and Riley is our inspiration! You go, Riley!

Have a great week everyone.

Love, Michele

Wednesday, September 06, 2000 at 06:49 AM (CDT)

Just a quick note - Katie is feeling pretty good. Her cough is still there, but she hasn't had any fever. School yesterday went pretty well. The weather here has gotten a lot cooler. I know that when that happens I tend to pick up a cold or something. I just hope Katie doesn't get anything else.

On Friday we are going to our cancer clinic's family weekend. Lucy is going to visit with her mommy and brother and sister! I can't wait to see the puppies together again.

Thanks for all the good thoughts and prayers this past week (and year!)

Love, Michele

Sunday, September 03, 2000 at 09:30 PM (CDT)

Hi, everyone. Katie-belle and I have had a very quiet weekend. She insists that she is fine, then she coughs so hard it scares me. She hasn't run a fever since Friday morning and otherwise seems ok. She gets to go to school on Tuesday if she is still feeling good. Me, too!

I also wanted you all to know that September is Childhood Cancer Month. The gold ribbon is the symbol of childhood cancer and if you would like to order one, go to: www.goldribbons.org.

A support group I belong to suggested we send letters to the editor of our paper and I did so...the text is below. Take care everyone.

Love, Michele


--------------------------------------------------------------------------------

Dear Editor:

September is Childhood Cancer Month.

Currently one in every 330 children in the United States develops cancer by the age of nineteen. In fact, despite remarkable research progress, cancer still kills more children than any other disease.

My daughter, Katie, was diagnosed with neuroblastoma in October 1999. She was treated at Richland Memorial with chemotherapy, radiation, surgery and an autologous stem cell transplant. She is currently taking the drug accutane to try to prevent a relapse of this aggressive cancer.

Childhood Cancer Month, observed each September, provides an annual opportunity to recognize childhood cancer patients, survivors, families and caregivers and honor those young people who have lost their lives to cancer.

A gold ribbon worn on your lapel shows that you want to see more cures available for infants, children and teenagers with cancer. I wish everyone in our community would wear a gold ribbon during the month of September.

The Gold Ribbon Campaign for Childhood Cancer Awareness was started in 1997 by Gigi Thorsen, who lost her daughter to leukemia in 1996. The Gold Ribbon website, for more information or ordering a gold ribbon pin is www.goldribbons.org. Proceeds from the sale of gold
ribbon pins are going toward the establishment of a national support group for parents who have lost a child to cancer.

Treatment and research are being done right here in our community. Each year, communities nationwide sponsor events to increase awareness of childhood cancer. Please support these events in any way possible.

Friday, September 01, 2000 at 08:06 PM (CDT)

Hi, everyone. Katie had a pretty good day. She threw up after her meds this morning (accutane round #3 started today, along with augmentin for the pneumonia - not a great combination), but otherwise felt pretty good. Her pain is a lot better - I forgot to tell you all that she was having a lot of upper abdominal pain. The pain was actually from the pneumonia crowding her diaphragm. Ouch. Katie is again mad at me for vetoing the idea of going to play tennis today. This kid just doesn't get it that her lungs are filled with icky stuff.

Katie took a long nap this afternoon with Lucy. They were both worn out after this week. Lucy looks wiped out after playing with her big doggy friends all week. Have a great holiday weekend everyone - we are going to chill out and work on fixing those lungs.

Love, Michele

Thursday, August 31, 2000 at 06:30 PM (CDT)

After a few more tests today (sinus CAT scan, chest x-ray, more blood tests - poor kid has been stuck three times in the past 24 hours), the verdict is in: bacterial pneumonia. Katie's white count is now 5 times more than normal, and she is still running a fever. Luckily (unluckily???) there are no beds available as inpatient in pediatric oncology, so we were allowed to come home on oral antibiotics with strict instructions to give a daily update via the telephone to her doctor.

Katie actually feels good. She was really mad at me for not allowing her to play on the equipment at McDonald's when we stopped for a quick dinner before heading to the pharmacy. She is absolutely amazing. If it was me, I'd be in bed. And speaking of that...we both need some more rest. It's been a long two days. Thanks for all your messages and support (and thanks, Michelle and Brian for being foster parents to little Lucy). I'll keep you all updated.

Love, Michele

Thursday, August 31, 2000 at 03:58 AM (CDT)

Hi, everyone. Yes, it is 5:00 a.m. Katie and I just returned from the ER. Yesterday's doctor visits were wonderful - both the nephrologist and oncologist said that Katie is doing great. That was in the early afternoon. In fact, the nephrologist stretched out our return appointment with him for one month! Yeah! We went to visit a friend, came home, had dinner and then....

At about 10:00 p.m., after being asleep for two hours, Katie called for me. I went to see what was up - and Katie was shaking like a leaf and her teeth were chattering. She told me that she couldn't stop her teeth from making noise. I felt her skin and she was on fire. We talked to her oncologist who told me to bring her immediately to the ER at Richland Memorial (trip #3 to Columbia yesterday!) By the time we got to the ER, her temp was 104.2. I need to cut this short, I'm exhausted. Deal was either to be admitted to the regular pediatric floor or come home and come back in to the cancer clinic this afternoon, we chose home. Katie got some strong antibiotics, Tylenol and some fluids. I'm heading for bed. First glance looks like a virus. Cultures were run, we'll get the results by Friday. Keep her in your prayers, everyone.

Love, Michele

Saturday, August 26, 2000 at 01:20 PM (CDT)

Hi, everyone! I just put three new pictures on this site. After the craziness of Monday, this week went pretty well. Katie's tummy still bothered her in the morning, but after some anti-nausea medicine, she felt fine. School was great for her and it was good for me, too. On Friday, though, I almost passed out cold when Katie came home. I haven't used my brain that much in almost a year. Katie and I went to bed at 9:00 p.m., both exhausted. Mike was still packing - he left for Las Vegas this morning at 4:00 a.m. He will be back sometime around September 15th.

Katie has some doctor's appointments on Wednesday, so I'll send an update then. Hope you are all doing well!

Love, Michele

P.S. I am about to put about 20 new pictures on the Zing album, too (see the link below)!

Monday, August 21, 2000 at 04:12 PM (CDT)

To everyone I saw at school today - Katie got a thorough check-up and it is just a virus. To fill everyone else in - we had major drama this morning. Yesterday, Katie threw up her breakfast, took a really long nap, and was fighting some diarrhea. She did better in the afternoon and evening, so I felt we were home free. She got up at 3:00 a.m., threw up again, and then was miserable when it came time for school. Her major complaint was abdominal pain. I was freaking out, of course, because this was the first day of two of my classes, Mike had to be at work, and the poor little thing really seemed sick! So, I called the oncologist who told me to bring her in after my classes, she spent the morning with Monika (and acted just fine, by the way). Katie has managed to pick up a virus, probably at school, and my hair got a little grayer. She was actually in good spirits at the doctor's office, but she has been sleeping ever since we left there. The doctor's prescription was: school - tomorrow.

Katie also had some blood drawn and her one kidney number got a little worse, so she has to go on sodium bicarbonate. She goes back in next Wednesday, as long as her virus gets better. Let's hope it does. Today was no fun. Have a good week, everyone.

Love, Michele

Saturday, August 19, 2000 at 02:47 PM (CDT)

Hi, everyone. Katie-belle is snoozing right now, and I am avoiding schoolwork (didn't think I would start practicing avoidance so soon, huh?) Katie's first full week at school went pretty well. She aced her spelling and vocabulary tests on Friday! It was an aggravating week food-wise. I chalked it up to all the medicine she was taking before school. Now her challenge is to eat well for the next two weeks. Her weight hasn't drastically dropped yet, but I have a feeling it will.

Katie's kidneys are still acting up - the numbers are slightly worse this week, and we did see the nephrologist. He is still in the watch-and-wait mode, so we don't have to deal with a kidney biopsy yet. Her CO2 is down and has been down, so another blood test Monday will tell us if she has to go on medication to deal with that. Otherwise, we see him in two weeks, along with the oncologists.

I think the hardest part about us going back to school is juggling these appointments and crazy schedules. It does feel nice to do something else for a change, though. Lucy is doing great - she has a propensity to chew anything (and loves paper and bugs), dig and generally demand a lot of attention, but she is a sweet dog who loves to cuddle. In fact, she is curled around Katie's head taking a nap right now, too.

I'm not sure if I told all of you, but the Make-a-Wish Foundation (through Carolina Sunshine - the local branch) has approved our trip to Hawaii. They are making the final arrangements now and I am pretty sure we leave on December 26th. Yahoo! Take care, everyone.

Love, Michele

Friday, August 11, 2000 at 03:43 PM (CDT)

Hi, everyone! I can't believe it has been a whole week since I sent an update. Things are ok. Katie looks and feels pretty good. She still takes a daily nap, but it is much shorter. She is also not sleeping as long at night. Her first grade testing was on Thursday, so she and I snuck away to Florida to visit Nanny and Pop-Pop from the 5th through the 9th. We swam, sometimes three times a day, shopped a little bit, and took a ride on the Mt. Dora Cannonball (a 1913 steam engine train). Katie got to spend some time with Jessica, Mark, and David - children of two of my cousins, along with Aunt Sandy, Uncle Ken, and of couse, Nanny and Pop-Pop. Daddy is off to Pennsylvania to go to the beach in New Jersey with his family. We were all supposed to go but crazy Sumter, South Carolina started school so early that Katie and I have to stay home and be good students. He had better bring home some purple salt water taffy, or Katie will not let him in the door.

The blood tests for Katie's kidneys have been getting incrementally worse. Her nephrologist told us to watch for an increase in creatinine (there is), white blood cells in her urine (now there are some), and an increase in her BUN (also there). We will see him again on Friday, and have more blood work in oncology on Thursday. I really would love to have an answer as to what is going on with those kidneys.

Katie was taken off Megace and her eating has fallen by the wayside again. She lost 2 pounds this past week. For lunch today at school, she ate one-quarter of a peanut butter and jelly sandwich. I asked her if she was running her mouth with her friends or eating and she said, "I think I talk too much." Yeah. I made her have a big snack after school. Quite a difference from two weeks ago. She is on her second round of accutane, along with daily doses of penicillin and acyclovir, so maybe that combination makes her tummy unenthusiastic.

School starts for me next Thursday. Don't have much more to say about that! I'm looking forward to seeing everyone again, though. Have a great weekend everyone!

Love, Michele

Friday, August 04, 2000 at 02:47 PM (CDT)

Hi, everyone. Just wanted to send a quick note that Katie really enjoyed her first day of first grade! The bus was really late this morning, so I had to take her to school. I dropped her off at the door and sobbed all the way home, worrying that she wouldn't find her classroom. Then I cried over her going to school in the first place! She made it home on the bus just fine, and she is now napping. Katie didn't fall asleep until well after 11:00 p.m. last night because she was so excited about school.

I have added new pictures to this site. There are three new ones from camp. I have also added five more to her Zing album. The link is below. Have a great weekend everyone.

Love, Michele

Wednesday, August 02, 2000 at 09:23 PM (CDT)

Hi, everyone. I have been waiting for a few days to try to gather my thoughts about an update. First let me say that Katie physically is doing better than she has in months. Her naps are decreasing and her energy is increasing. She had an amazing time at camp and is really looking forward to school!

Her kidneys, however, are not cooperating. We met with the pediatric nephrologist on Monday. He was relatively unconcerned from the standpoint of immediate treatment after reviewing her labwork and doing an exam. We talked about a monthly visit to see him. Then, he asked for a urine sample and found both blood and protein in her urine. He immediately ordered some more specific blood tests, a renal ultrasound and stepped up our follow-up appointment for two weeks. He also discussed a kidney biopsy (take some kidney tissue for testing). We heard words like chronic renal failure, dialysis, kidney transplant and we were all pretty freaked out. There was no definite diagnosis, though. One thing sticks out in the nephrologist's mind is radiation nephritis - a complication from all the radiation she received. To us, this is very ironic - radiation was so simple, so easy. But Katie's most serious side effects have come from radiation (all the tiredness, lack of energy and now her kidneys).

On Tuesday, Katie had an appointment with her BMT doctor and a renal ultrasound. The BMT doctor thinks that a kidney biopsy shouldn't even be discussed right now and ordered a full urinalysis (came back moderate for blood and a trace of protein, but nothing else - like an infection). Then today, we had an appointment with her oncologist who felt the same way about a kidney biopsy - way too early. WE ARE SO CONFUSED. The renal ultrasound, by the way, showed a "puny" right kidney and a good left one. We knew her right kidney was going to be puny, so that wasn't a surprise.

OK, now on to some positive things - our little rugrat now weighs a whopping 52 pounds!!! Unbelievable. She has finally achieved a belly just like Daddy (and is proud to tell you that, too...) She is now off the appetite stimulant and hopefully will be able to maintain her weight pretty close to the 50 pound mark. We looked her up on those height and weight charts, and she is at the 50th percentile for height and the 80th percentile for weight - a huge achievement after this year. Her hair is absolutely gorgeous and she is now leaving the hats at home. Yesterday a lady at ultrasound said she wanted a hair cut like Katie's and we just laughed. It is wavy, shiny and beautiful.

Well, school orientation is tomorrow and school officially starts on Friday. I am sure I am more nervous than Katie. She is really looking forward to it. Our work on the BMT closure may have helped a little - the health alliance is now claiming that they will continue to perform autologous stem cell transplants like Katie's. I just hope they can keep some of the staff - from doctors to janitors - who helped us through that ordeal.

Katie has some blood work next week, then doctor visits - oncology and nephrology - the week after. And as a friend reminded me just today - these kidney problems can be dealt with, and it is not MORE cancer. For that we are very, very thankful. Take care everyone.

Love, Michele

Saturday, July 29, 2000 at 09:12 PM (CDT)

Nanny, Pop-Pop and I were lucky enough to pick Katie up from camp today. She had a wonderful time and she looks so good. I couldn't stop staring at her and holding her hand. Her naps significantly decreased and they said she had lots of energy. She also ate like a champ. The grandparents can't get over how good she looks - her weight and her hair especially! Katie wanted to come straight home to see Lucy and she spent the afternoon napping and watching TV with her puppy. I just kept holding her...I missed her so much!

My week was fine, just too much time on my own. Next year, I will definitely go on vacation! Mike is on his way home as I type this so the whole family will be together tomorrow after a few weeks apart. Katie has doctor's appointments Monday (kidney specialist), Tuesday (BMT doctor) and Wednesday (oncologist), then school orientation is Thursday and school starts Friday. Whew! In the meantime, I'll be doing camp laundry and TDY laundry and pulling my hair out (and loving every minute of it!) Take care everyone.

Love, Michele

Monday, July 24, 2000 at 08:16 PM (CDT)

Hi, everyone. Katie left for Camp Kemo this morning, so happy and ready to go. I was fine at first - I had to run to a review class for my summer class and then I had lunch with some friends, but when I got home it really hit me. I called Mike and he wasn't in his hotel room, so then I felt really bad! This is going to be a long week. Thank goodness for Tylenol PM and my exam on Wednesday. I am sure she will have an awesome time, though.

Katie has appointments with her BMT doctor and the kidney specialist on Monday when she gets back from camp. I'll send another update to tell you all about camp (we pick her up on Saturday). In the meantime, I'm going to play with Lucy and pretend I like the rest. Take care, everyone.

Love, Michele

Thursday, July 20, 2000 at 02:27 PM (CDT)

Hi, everyone. Katie's hearing test went very well, and her hearing is perfect. The audiologist said, "Katie can hear grass grow." Thank goodness the chemo didn't damage her hearing! Then we got the results of her bone marrow aspirate and they couldn't find any cancer cells. No one has used the word remission yet, but with all of these test results showing no cancer, that has to be the word of the day. Katie's kidneys are still giving some funky results so when she gets back from camp, we are going to the kidney specialist. Dr. Kevin said he isn't worried at all, that if it is "something" that "something" can be easily treated. Also, she is up to almost 50 pounds (at the beginning of June, Katie weighed 37 pounds). She gained five pounds in the past two weeks!

As we walked the halls of the hospital today, complete strangers were hugging us because of the story last night. Katie was grinning the whole time. She was also very excited about an executive decision Dr. Kevin made - he decided to let Katie start swimming as soon as the incision heals where her line used to be. He told us to pack her swimming suit for camp, just in case. Katie really, really wanted this and we weighed the risk of germs compared to the psychological impact (she talks about swimming CONSTANTLY) and he said it would be ok. Also, he is going to allow her to start gymnastics in September if she has a good August physically. We'll have to review that each year to protect her kidneys, but he saw today how important swimming and gymnastics were to her. These are great things to hear, but as Dr. Kevin said, this applies right at this moment. Who knows what tomorrow will bring. Today is good.

Take care everyone!

Love, Michele

Monday, July 17, 2000 at 12:03 PM (CDT)

After 9 months and 9 days, Katie's central line was removed! The procedure went smoothly. Katie was a little upset coming out of anesthesia, but overall she did great. She is now sleeping comfortably. Her back is hurting from the bone marrow aspirate - Dr. Kevin took samples out of both hips so she is a little sore. We should get the results in a few days. I am trying to find some other things to tell you all, but basically, it was an uneventful surgery. Yahoo. Katie has a hearing test set up for Thursday and then an appointment at the cancer clinic afterwards, so I will send an update then. Thanks for all the good thoughts and prayers, everyone!

Love, Michele

Sunday, July 16, 2000 at 11:34 AM (CDT)

Hi, everyone. I haven't updated in a few days. It has been very hectic here. Katie's hour long visit at the clinic turned into four hours on Thursday. Some of her bloodwork came back with abnormal results - specifically, problems with her kidneys. There is now a discussion about sending us to a kidney specialist. I was, and am still, sick about it. Katie had to do a 24 hour urine test (I had to collect all her urine for that length of time) for a type of clearance, and that test came back normal. If it wasn't normal, they were going to delay her central line removal. So, she is still set for surgery - we keep calling it "happy surgery" - on Monday. The oncologists will also do a final bone marrow aspirate on that day.

Then on Friday, Christian was buried. It was a beautiful service. The Hornsby's church really showed how much this little boy meant to everyone. It was very moving. I was going to send Katie to Lakin, but Katie insisted that she wanted to go to the funeral. I was glad she was there - she held my hand and patted my back the entire time. She was a great comfort to me. I can't believe I just wrote that about my six-year-old daughter, but she really is a comfort. I am so proud of her.

I am sure all will go well on Monday and we can finally not worry about that central line. Katie is very bravely facing needle sticks without the line and looking forward to moving on. Have a great week, everyone.

Love, Michele

Wed Jul 12 2:40:21 CST 2000

Hi, everyone. We are doing fine! Katie looks great and is still napping every day. In fact, tonight it occurred to her that she might not be able to take a nap at camp and she was horrified. She said she is going to have to have a talk with Miss Jeanie (Camp Kemo director) and tell her that she has to have her afternoon nap to get her rest (she had her hand on her hip and everything). She might be six in years, but she acts more like thirty!

The accutane has gone well so far. The drug comes in capsules. Katie has to take two pills in the morning and two at night. She has a lot of trouble taking pills and we haven't been able to get her to do it, but luckily they don't taste bad and Katie eats them with yogurt. She describes the taste as old tea. Tonight she actually swallowed one whole and she was so shocked. We haven't seen any side effects yet (they can range from a rash on the face and dry lips to nausea, diarrhea and vomiting). I am knocking on wood as I type this!

Her next doctor's appointment is on Thursday and she was supposed to have a hearing test then, but we are going to change the date. The appointment was set for 2:00 p.m. and that is prime nap time. I want Katie alert and ready for that test. She has been messing up a lot of words that I say to her and cranking up the TV, so I want to see if the chemo did any damage to her hearing. Then the big day is Monday, July 17th - Katie will get her central line removed and have one final bone marrow aspirate.

Michael leaves tomorrow for Florida with the Air Force. For some reason, Katie turned on the charm with Daddy tonight and now he feels absolutely horrible about leaving. I think she is just trying to worm a present out of him. She definitely knows how to wrap Daddy around her little finger. We will all miss him. Hopefully he will be home on July 30th.

Take care everyone.

Love, Michele

Fri Jul 7 1:52:27 CST 2000

Tomorrow is the big Day +100 - a huge milestone and a big relief. Katie had another long doctor's appointment today. Her fatigue seems to actually be getting worse. She will now nap twice a day. They are running one more test - on her thyroid, but the consensus seems to be either post-transplant fatigue or somnolence syndrome from all the radiation she received. I feel a little more relaxed now. Katie starts accutane tomorrow. It is the last step of real treatment for neuroblastoma. She will take accutane on a two week on/two week off schedule for six months. She will see the doctor every other week (every week for the time being) and have major scans about every three months. A hearing test and a trip to the dentist are in the works in the next few weeks. Neuroblastoma has a very large relapse rate but as my sweet husband pointed out - statistics mean nothing.

Let's see...our July is going to consist of Daddy going TDY (temporary duty) to Tyndall AFB in Florida from July 12th through the 29th, Katie's line removal and a bone marrow aspirate on July 17th, Camp Kemo from July 24th through the 29th, and Mommy has her exam on the 26th. Whew! The week after camp,. Katie starts school. I'm tired just thinking about it, but I love the idea of being busy with other things than treatment...

Lucy is doing great, and her sister now lives around the corner with Miss Knepp. Katie and the puppy practically have the same napping schedule. It is so sweet to see them curled up together.

Hope everyone has a great weekend.

Love, Michele

Thursday, June 29, 2000 at 01:41 PM (CDT)

The MRI was clear - everyone join us in a great big sigh of relief. Katie was awesome for her MRI. I gave her a little Benadryl before and she fell asleep during the scan, even with all the loud noises. She didn't even need to be injected because the radiologist was standing right there and said that they got a great picture.

Next is her line removal and a bone marrow aspirate, then she will go on accutane. We are also going to have Katie's hearing tested. She keeps mixing up our words and cranking up the TV. I hope it is just paranoia again, but the drugs she received can mess with hearing, so we will check it to be sure. Dr. Godder also put Katie on antibiotics long-term just to keep things like the pneumonia away and said that even without her line, she cannot go swimming until our trip to Hawaii. There are just too many germs in pools. I am sure we will find something else to occupy our time!

I know we were guided by all your prayers and good thoughts. Thank you all for your support. This has been another long two weeks with a wonderful ending. Maybe we got too confident and this was a gentle reminder to treasure each day. And that we will do. Take care everyone.

Love, Michele

Monday, June 26, 2000 at 07:08 PM (CDT)

Hi, everyone. It was a confusing day. The results from the bronchoscopy came back with a slight bacterial infection in Katie's lungs. She is now on an antibiotic for that. Also, Dr. Godder (the BMT doctor) is concerned that Katie has no immunity left to chicken pox. That is being tested and if it comes back that her immunity is gone, Katie is going on Acyclovir to protect her from those germs. Katie's echocardiogram was normal - no heart damage - yeah! Her CAT scan looked great, also, from a malignancy point of view. When her chest CAT scan from May was compared with the chest CAT scan last week, though, it was obvious that she went from viral pneumonia to bacterial pneumonia.

Dr. Godder ordered the MRI because of something strange on Katie's bone scan. The area of her spine that was originally very diseased has some odd uptake. Dr. Godder feels that it is just scars from local radiation, but it could be disease, so that is why she ordered the MRI. She is very thorough and extra cautious. The MRI is scheduled for Thursday morning, bright and early. We are going back to BMT for a doctor visit afterwards. Hopefully we will have results that day. I don't think I can take too much more waiting.

Katie is now almost 48 pounds, her hair is glorious and she looks great. I also spoke to her oncologists today and if this turns out to be nothing, all she has to do is have a bone marrow aspirate and she can get her line out and start accutane. Day +100 is on July 7th. Day +100 is considered key in transplant terms, and we can't wait. Take care.

Love, Michele

Friday, June 23, 2000 at 09:09 PM (CDT)

Today was another rough day. The bronchoscopy was, well...difficult. Katie was given both Versed and Fentenyl and she never actually fell asleep. The plan was for me to hold her hand and be with her until she fell asleep then leave while they did the procedure. Because she never actually got there (they kept giving her more and more meds), I stayed for the procedure. She screamed, cried and said Mommy during the entire time the probe went into her nose, down her throat and into her lungs. The best things about this are: Dr. Marcille got to see exactly how well her lungs were working and Katie doesn't remember a thing (the Versed is an amnesiac). The worst thing - seeing Katie in that much agony. It was horrible.

Katie came out of the procedure pretty well, but she was so groggy and mean from the Versed and starving for food that I didn't want to subject her to a stay to discuss things with a BMT doctor. We went up to BMT and the receptionist met us. Dr. Godder, the BMT doctor we saw this week, is out of town, but wants to see us on Monday afternoon and she has scheduled Katie for an MRI next Thursday. We have no idea why Dr. Godder ordered an MRI. The receptionist patted me on the arm and said that it will all be explained on Monday. I was wondering how I would sleep for the next three nights.

So, here we are - huge looming questions with no answers. The results from the cultures from today's bronchoscopy will be back on Monday, and we will be able to meet with Dr. Godder then also. Until then, we live one day at a time.

Now, for something very funny. Katie was absolutely starving after the bronchoscopy and desparately wanted to go to Waffle House. On the way there, she ate three Rice Krispies treats and a brownie. While we were there, she ate two scrambled eggs, two pieces of toast and half a waffle. If there had been any more food on the table, she would have eaten it. She had a piece of jelly toast in one hand and was using the other hand to eat the waffle. I laughed so hard. Two minutes down the road she had to go potty, so we stopped at her favorite gas station/convenience store where she also bought candy and polished that off on the way home. I thought she was going to explode. She came home and took a good long 3 1/2 hour nap, and of course, woke up hungry. She didn't even have her Megace today! It is time to seriously cut back that medicine!

Say some prayers for us for this coming week. We really need them.

Love, Michele

Thursday, June 22, 2000 at 08:13 PM (CDT)

I am sitting here with the big-belly girl (Katie looks so good! and she gained another pound since Monday!) On the eating front, Katie is doing beautifully. She is down to one-quarter of the dose of Megace and still eating like crazy.

Our appointment with the pulmonologist was completely frustrating. She actually said to me, "So, why are you here?" She didn't have one test result, she obviously hadn't talked to our BMT doctor, and I was very angry - not at her, just at this whole situation. The doctor asked us to go to radiology and pick up all of Katie's films for the past six months and we did. They must have weighed ten pounds. Once she reviewed them, she found a very small spot on one of her lungs that looks like a snot plug. Tomorrow, Katie will have another bronchoscopy (like the one she had in January). Very graphically, it is a snot removal. The pulmonologist, however, doesn't believe this one tiny snot plug is causing Katie to have no energy and to nap and sleep so much.

When we returned home, I called BMT to find out the results of all those tests two days ago. Unfortunately, her doctor was gone and has left town until Monday. Another doctor will give us results tomorrow. It seems that the first BMT doctor wanted to see us today but she never told us to make an appointment (I checked with Mike and he doesn't ever remember her saying we should come back). I have a feeling the source of all of this confusion is Tuesday's announcement that the Palmetto Health Alliance is closing Richland Memorial's BMT unit. As of October, we have no BMT anymore at Richland. We have no idea how we will be followed up, where Katie's remaining stem cells will be kept, etc. because of course, no patient has any direct knowledge of the goings on at this hospital.

The pulmonologist thought her CAT scan looked great, though and she didn't see any evidence of a malignancy. We shall see what everything else shows tomorrow. Take care everyone.

Love, Michele

Tuesday, June 20, 2000 at 10:44 PM (CDT)

Hi, everyone. Katie was awesome for her scans and echocardiogram today. We were so proud. We have no results to share, so this will be a short one. We were told that the pulmonologist would go over the results with us on Thursday. We'll post an update then. Take care.

Michele

Monday, June 19, 2000 at 09:08 PM (CDT)

Hi, everyone. Katie had an appointment with her bone marrow transplant doctor today. Dr. Godder ended up ordering a CAT scan, a bone scan, an echocardiogram and an appointment with a lung specialist. I admitted to her that I felt slightly silly complaining about Katie's lack of energy after all she has been through, but Dr. Godder emphasized how serious a lung problem can be and said she felt totally comfortable ordering all these tests. So, tomorrow will be another long day - we start at 8:00 at bone scan and end with an echocardiogram in the afternoon. The appointment with the pulmonologist is on Thursday. Katie will then be scheduled for another bronchoscopy (like the one she had after surgery). They will put her under and take fluid samples from deep in her lungs. I'm just relieved they are taking a hard look at those little lungs.

We want Katie better because camp is coming up in less than five weeks! I can't believe it. Katie is going to Camp Kemo at the end of July and she is totally psyched. Lucy is doing well and keeping us entertained all the time. Take care everyone.

Love, Michele

Sunday, June 18, 2000 at 07:59 PM (CDT)

We had a wonderful Father's Day. Our newest addition, Lucy the puppy, moved in last night and she has been charming us ever since. Except at night. She whined quite a bit last night and Mike and I had to take turns holding her. She kept waking Katie up or I would have left her whine. Lucy is adorable and we even took a walk with her today. Right now, she is sleeping curled up around my neck as I am typing this. She has quite a thing for Mike!

Katie is doing pretty well. She had a great time with her godmother this weekend and really enjoyed a trip to Chuckie Cheese. Today she took another nap and spent most of the day in front of the TV, claiming she was exhausted. Tomorrow we are headed for the BMT clinic for Dr. Godder to take a look at her. She coughed a lot today and said that it hurt when she coughed. RRRR.

Please keep our friend Christian in your prayers. Christian's brain cancer relapsed and he is not doing well. He is such a sunshiny kid and doesn't deserve to have all this pain. Thanks, everyone.

Love, Michele

Thursday, June 15, 2000 at 09:35 PM (CDT)

Hi, everyone. Katie had a doctor's appointment today. Her blood counts are absolutely amazing. They are all completely within normal limits - so wonderful to see. Also, she has gained a little more than six pounds in two weeks! I wanted to do a cartwheel then and there. She LOOKS absolutely gorgeous. Her hair is really coming in now, her cheeks are filled in, and her little belly is pooching again.

The bad news is that her lungs still have crackles and she is still coughing. The oncologists are now sending us back to the transplant doctors to see if they know what to make of it. We may end up going to a pulmonologist (lung specialist). They mentioned Dr. Marcille, who was Katie's "snot" doctor after surgery when she had pneumonia before. Dr. Marcille is wonderful, and it would not be a hardship to see her again, although her description of the "snot" removal in January was pretty graphic! Katie will not start Accutane until we can figure out what is going on with her lungs. It is not only the crackles and coughing that everyone is worried about - she still is taking long naps in the afternoon and sleeping 10-12 hours a night, highly unusual for her. Yesterday, we ran errands and she didn't get to take a nap. She came to me at 7:30 p.m. and declared she was going to bed. Her oncologist thinks this is all related to her lungs. Anyway, we have to get an appointment with BMT next week and see if they can figure out what to do next.

OK, back to good news. Katie and I spoke to our social worker today and gave her the dates for our wish trip and what Katie wants to do on the trip. If it is approved, we are heading for Hawaii the day after Christmas! We are all very excited, but Katie is worried about Lucy (the puppy). Lucy doesn't even live with us yet, but I think they really did bond that day we met her. I am sure we can find a fun place for Lucy to stay - maybe even a visit with her dog-mommy, Sadie (ok, Jim?!)

Have a great weekend, everyone.

Love, Michele

Monday, June 12, 2000 at 01:02 PM (CDT)

Hi, everyone. We are doing fine. Katie has been sleeping a lot and running a low-grade fever, but she is eating like crazy. My parents were here for the night and they just saw her last weekend and commented that she looks much better than she did even a week ago. Her hair is growing in a lot now and it is so soft. Yesterday Katie claimed that she couldn't stop rubbing it because it was so nice to touch! Me, too.

Our big news is that we found our puppy. Jim is graciously letting us adopt one of his dog's puppies, and Katie named her Lucy. She is adorable. Mom is a cocker spaniel and Dad looks like a collie. Lucy is the runt of the litter. Lucy fell asleep on Katie's lap while we were visiting Jim and she can't get over how much the puppy loves her. Jim took a bunch of Polaroid pictures for us and I scanned a few of them. I am about to post a ton of new pictures to both this website and to her Zing album, so check later this evening. There are pictures from her birthday party, Vanessa's wedding, Katie's kindergarten graduation, and of course, Lucy.

Katie's next doctor's appointment is on Thursday. She is having a bunch of blood work done in anticipation of going on Accutane, and then she will have a physical. Take care, everyone. The link to the Zing album is below.

Love, Michele

Wednesday, June 07, 2000 at 08:06 PM (CDT)

Yeah! I finished a whole week of one class! I am so excited. It was great - a professor I am used to, a class that I had a few weeks of before I withdrew, and a topic I even like (Advanced Civil Procedure with Stravitz, by the way!) Katie has had a good week so far, also. Last night she spent the night with Lakin, and Lakin is here tonight. They are in the tub right now and they have been very good today. They both took a nap for me - something unusual for both of them!

Katie has turned into an eating machine - and she uses those exact words. Tonight she asked if Lakin was an eating machine, too. I cracked up. The Megace definitely did the trick. I held off weighing her until today and she has gained two pounds! We wanted to throw a party! Her little belly is pooching out a little bit now. She really never stops eating and plans her next meals in advance. We even have to ask her to slow down because she is eating a lot faster now. I love it! I am NOT complaining!

Have a great end of the week, everyone!

Love, Michele

Sunday, June 04, 2000 at 03:28 PM (CDT)

What an emotional day this has been - and here I am, alone in the house. Not good! I just had a good cry session, so I feel a little better. Just a few minutes ago, I watched Riley and his mom and dad on the Children's Miracle Network. I called to pledge and cried like a baby with the volunteer. She must think I'm nuts! I have been thinking all day about how to phrase my pride and love for all the cancer survivors I know, and I just can't do it. I know I'm going to leave someone out of the list, but here are a few that come to mind: Katie, Riley, TJ, Christian, Sam, Melissa, Jeananne, Aunt Reen, Jay, Terrie, Pam, Tevi, Zach, Arielle, Michael, Raymond, Bruce, Kaitie, Ezra, Christopher B., Christopher P., Destiny, Courtney, Mallory, Ashley, Jorge, Tyler....and everyone else who today is a cancer survivor. Cancer stole my peace of mind but it will NOT steal my joy. I urge everyone to support pediatric cancer research and support. I'll get off my soapbox now.

Oh, yeah - Katie is doing much better. Megace, the prescription appetite stimulant, is a miracle drug as far as we are concerned. I don't think Katie's calorie intake has doubled - I think it has tripled. She eats constantly, and the volume is huge. She is also obsessing again, and is pretty stuck on French toast. She would probably eat it all day if I let her. Her energy is up a little bit. Her birthday party yesterday at Columbia Marionette Theater was very fun and she even wanted to go to another party later in the evening. Of course, she passed out cold in about a minute when we got home, but that was more activity in one day than in the past week put together.

Katie is playing with Lakin right now, while Daddy does some errands so I can study for class tomorrow. I think I am emotional because of that, also. I feel like I'm standing on the edge of a cliff. But if there is only one thing I have learned, it is to take life one day at a time. Take care everyone. Sorry to have to share my emotional roller-coaster day, but I feel so much better!!!

Love, Michele

Wednesday, May 31, 2000 at 07:39 PM (CDT)

Hi, everyone. It is Day +63 from stem cell transplant, by the way. We had a doctor visit today and I had a long heart-to-heart with her primary oncologist. This pneumonia thing scared the daylights out of me. Dr. Kevin basically told me that she is doing very very well and we planned out the future. She will go on Accutane on Day +84. She could go on it earlier, but he thinks she needs a break - as do Mom and Dad. Also, she will have scans at the beginning of July and then her line can come out. That means the rest of the summer to swim and not be tied down to caring for that crazy thing (although we all love it). She doesn't go back to the doctor for two weeks!!!

I think part of my huge concern during her battle with pneumonia was that she breezed through regular chemo so easily and was never hospitalized for a fever or anything else. But she is doing great. Her weight is the same, so she is now on a prescription appetite stimulant. And right now, Katie and Daddy are hitting golf balls at the driving range. To quote my friends the Wests, TODAY IS GOOD.

I think that I will take a break from these updates for a little while, and will only send them out maybe twice a week unless something happens. Her doctor urged me to take a little break from cancer, cancer, cancer and I think he is right. Monday my summer class starts and tomorrow is June...have a great week everyone.

Love, Michele

Monday, May 29, 2000 at 10:07 PM (CDT)

Hi, everyone. We had a nice weekend. Katie's trip to school went well. She made it through the whole day - I couldn't believe it! She even tried to eat all of her lunch and she had a snack. Tomorrow is graduation and we are going to go, but Katie had to be talked into it. The only reason she gave for not going was that she would have to stand for a long time. I think she'll be ok. Our trip to Charleston for Vanessa's wedding was nice, although Katie had to rest a lot. We went out for a nice dinner and took a long carriage ride and then had a lot of naps in between. Katie was enthralled with the wedding itself but was worn out at the reception. It still felt like a normal family weekend, and we savored each moment.

Like I said, tomorrow is kindergarten graduation - Katie gets to participate and she is being promoted to first grade even without actually going to school since September last year. We are so proud of her, and so thankful that we had Miss Knepp in our lives. She is a wonderful teacher and we want to thank her via this list for all she has done for us this year, and we also want to thank Katie's school, Oakland Primary. The kids, the administration, the faculty and the parents have all supported us from the beginning. Thank you!

Katie's next doctor's appointment is on Wednesday and then her birthday party will be on Saturday. I have no idea what the doctor's appointment will bring. She is still exhausted much of the time, but her cough seems a smidge better and she is eating a little bit more. One thing I have definitely noticed is that the variety of foods is expanding. My mom will appreciate this one - she ate Dinosaurs for the first time since BMT today! I was in shock. She also had crab legs in Charleston, something else she has not eaten since BMT. Hope everyone had a wonderful holiday weekend.

Love, Michele

Friday, May 26, 2000 at 06:16 AM (CDT)

I tried to send an update out last night but we were hit with a whomping storm and we had to take cover! Anyway, Katie is doing much better. She was NOT admitted for her birthday! Yeah! In fact, the doctor approved a trip to school today and a trip to Charleston for Vanessa's wedding this weekend. We were all overjoyed. The new antibiotic seems to have helped, and she is eating a little bit more. In fact, she gained a whole half a pound. Her birthday was fun, although quiet. We went out for dinner to Ryan's - her current favorite - and we went to bed early so she could rest up for school. By the way, Katie has sworn off fast food. She has eaten at Burger King once since discharge from BMT, and never at McDonald's or all of the other places. I can't believe it.

Thanks to everyone who has sent cards and gifts. I think she secretly loves being six because every time someone commented on it yesterday, she grinned and lit up from the inside. Take care everyone.

Love, Michele

Tuesday, May 23, 2000 at 08:27 PM (CDT)

Hi, everyone. We got back from Florida today. I wish I could tell you it was all sunshine and roses, but... First of all, we had a wonderful time and it felt great to get away. Nanny, Pop-Pop, Aunt Sandy and Uncle Ken and all of their various friends and family went out of their way to show us a great time. Unfortunately, Katie felt worse and worse each day. Finally, yesterday, the only thing we did was run to Wal-Mart for a few things in the afternoon. We got home at 4:00 and Katie put on her jammies and declared she was done for the day. She spent most of our days in front of the television, too exhausted to do much of anything. Her eating habits have definitely gotten worse, too. Her cough seems to have deepened, also (rrr, the list never ends). I called her doctor Sunday night and he felt that she could stay until today but she needed to be seen today. So, we spent the afternoon at the cancer clinic.

But there's good news! Her chest x-ray came back improved and her blood counts are fantastic (7.9 white blood count, 10.6 hemoglobin, and 151 platelets - all within normal limits!) Her oxygen saturation rate was only 89, though, so Dr. Kevin said we could go home if it rebounded after a breathing treatment. It did. We now go back on Thursday, and if she isn't improved, then she is admitted. This is where we need you! Start the prayers rolling - her birthday is Thursday and she is planning on going to school for the end of the year party on Friday. She needs to get better! Katie now weighs 39 pounds, 7 pounds shy of her normal hoped-for weight. She lost 2 pounds this week alone. She may go on an appetite stimulant if we can't do something about her weight.

We did a lot of fun things in Florida. Katie and I learned how to play shuffleboard (she's awesome at it, I stink - see Dad, I admit it!) We got to see the new Flintstones movie, and the best thing of all - Aunt Sandy hosted a birthday party for Katie. She got some beautiful outfits (that she has worn every day since), and cool toys. We're glad to be back with Mike. I think we all missed each other! Take care everyone, I'll send out an update Thursday.

Love, Michele

Thursday, May 18, 2000 at 09:20 PM (CDT)

Hi from Florida! We got the ok to travel to Florida, with some reluctance. Katie still has pneumonia in both lungs, but she is getting enough oxygen and seems to be improving so her doctor let us go. We have to keep the pediatric oncology phone number to a hospital in Orlando close at hand, but we hope and pray we don't have to use it. Katie was so excited. Then it took almost eight hours to get here and she was out of her mind. She cried twice - once complaining about the long trip and the second when I suggested ice cream. She couldn't believe I would want to stop and lose time getting to Nanny and Pop-Pop's. I have a lot of nerve.

I hope everyone is doing well. My aunt has a big birthday party planned for Katie on Saturday. Take care everyone.

Love, Michele

Wednesday, May 17, 2000 at 05:54 PM (CDT)

Hi, everyone. Katie felt pretty tired today and eating was a real struggle. She told me she was just resting so we could have fun on our trip. Tomorrow we hope to go to Florida after Katie's doctor's appointment. If you receive an update tomorrow night from Bob Dahl (my dad!) then you will know we made it. It is all Katie can talk about. She has a long list of things she wants to do, like golf cart rides and playing cards with Nanny and Aunt Sandy (no cheating, you two!)

I guess the biggest news is that I called the academic dean at law school today, gave him my wish list of classes and he said he would get me registered! I am going to take a summer class so that I don't have to take a huge load in the fall. Also, with the lightened schedule, I can be home by the time Katie gets home from school and she won't have to go to after school care. I was excited, yet scared to death. The summer class starts June 5th!

Well, everyone, say a prayer that she will get the doctor's ok and we can chill out (ha ha) in Florida.

Love, Michele

Monday, May 15, 2000 at 09:21 PM (CDT)

Hi, everyone. Katie had a good day. Her pneumonia is improving and there is a strong possibility that we will still get to visit Nanny and Pop-Pop and everyone else in Florida this weekend. Dr. Ron made us an appointment for Thursday at 8:00 a.m., and then he will say yes or no to our travel plans. If it is yes, we are leaving from the hospital! Woo hoo!

It was also an exciting day for our future. Katie's next scans and bone marrow aspirate will be around Day +100, which officially is July 7th. After that, she can have her central line removed. Even though it means she will have to get stuck for scans every three months, she is very excited. She will be able to swim, and we will not have to worry about the line every day. Also, she is going to start accutane as soon as her pneumonia is resolved. Accutane is the last part of her treatment for neuroblastoma. Accutane (yes, the acne drug) is the last mopping up for her type of cancer cells. She will take the drug for six months with a schedule of two weeks on and two weeks off. They will monitor her liver function during that time pretty closely.

I put a new picture on Katie's website - a very special one. It is a picture of Riley, TJ, and Katie. I have mentioned Riley and TJ here before. They both had/have neuroblastoma. Riley has been finished with treatment for years, and is a miracle child. TJ was just diagnosed a little while ago, but his recent scans show that the chemo is really doing a number on his tumor. Anyway, check out the picture - it is awesome.

Love, Michele

Sunday, May 14, 2000 at 11:11 AM (CDT)

I got to the hospital this morning and got the best gift! Katie's doctor let her go home. We just arrived at the house (it's noon) and I wanted to send this out right away. She has an appointment tomorrow afternoon. The pneumonia is still there, but it is definitely viral - the bacteria cultures didn't grow anything. She will finish up her Zithromax and hopefully be all better. I couldn't have asked for a better present! Hope you all have a wonderful day...

Love, Michele

Saturday, May 13, 2000 at 09:44 PM (CDT)

Hi, everyone. Katie is doing all right. We got the definitive diagnosis - viral pneumonia. They even checked her for RSV (negative). She has gone from excited to stay in the hospital to definitely grumpy. She can't go anywhere because she is on constant oxygen - not even the hallways. We watched a lot of TV today. I hope this isn't for long, because Mike has an exercise next week (the Air Force is playing war games). When he told his superiors that Katie was admitted on Friday, they said, "Oh." and that was it, so he is assuming there is no way to be with us if she stays in the hospital. She is going to have to do some major getting well tomorrow to get out that soon, though. Every time she is off her oxygen (to go to the bathroom, that's about it), her oxygen saturation drops down below the doctor's established minimum. She looks wonderful, though.

Another bit of bad news - she lost three pounds since she got off the TPN, and is now definitely too skinny. If her weight drops any more, she may go back on the TPN. She ate pretty well today, though, so we'll see. Certain smells still make her gag (like the smell of hospital food), so I am going to take in some of her favorites tomorrow.

I hope everyone has a wonderful Mother's Day tomorrow. Even though we will spend ours in the hospital, we will be together. To my own mother, I love you and thank you for giving me the best example of how to be a great mom. To my mother-in-law, thanks for a wonderful husband...and to all the other mothers on this list - give your kids a big giant hug.

Love, Michele

Friday, May 12, 2000 at 05:22 PM (CDT)

Hi, everyone. I am writing this from the hospital. Katie was admitted today with walking pneumonia. Last night she began having shortness of breath, and I called the clinic this morning. They had me bring her in. They did her counts and checked her oxygen saturation rate. The sat rate was 93, and then it fell to 91 after a breathing treatment. They did a chest x-ray and it came back with some changes from the last one. We are waiting for a CAT scan of her chest right now. She is in Room 7522 in the Cancer Center, on the peds oncology side, not BMT.

She feels ok. Her breathing is fast and they have her on three different antibiotics. The cultures should be back on Monday, until then we will be in here. She is also on continuous oxygen. We were kind of thrown for a loop. I'll post a longer update tomorrow. For now, she is comfortable and we are going to try to get some sleep. Her doctor said this is a little speed bump, and he isn't very concerned. She can lick this pretty fast. Take care.

Love, Michele

Thursday, May 11, 2000 at 04:20 PM (CDT)

Hi, everyone. Katie is fine, doing very well actually. We have been running errands and spending time on tennis and golf. We are trying to focus her on non-contact sports after the doctors told us that she wouldn't be allowed to play soccer and do gymnastics because of that pesky kidney. She is eating a little bit, but has lost a few more pounds. I hate to hug her and feel her bones, but she is making a real effort. Her tiny little stomach just doesn't want to hold that much food. Katie fades pretty fast when we do anything active, but she is no longer taking naps, so I know she is getting stronger.

I can't believe Mother's Day is on Sunday. Time just slips through our fingers. I am just thankful that Katie feels so good. Our plans are set for a trip to Florida next Thursday, and we both can't wait. I have heard that our family and friends in Florida are pretty psyched, too. Unfortunately, Mike can't go because he has weekend duty. Katie the drama queen is already moaning about it.

I added four more pictures to the Zing album (I'm kind of going crazy with it, but I think it is so cool!) Take care everyone.

Love, Michele

Monday, May 08, 2000 at 09:09 PM (CDT)

Hi, everyone! Today was fine. This weekend, I bought Katie a tennis racket and we started "lessons" today. I have played since I was a little girl and I was hitting the ball against a backboard today and Katie just couldn't get over it. She thought it was so cool. She wants to get really good to impress Pop-Pop next week, because he was my coach and teacher. Unfortunately, we went out in the middle of the day and it was really hot here. We lasted about 10 minutes! Tomorrow we will go in the morning.

After several phone calls to the clinic, we finally got an appointment for next Monday. I was a little aggravated when the receptionist told me that if I was nervous, we could bring her in this week (this is supposedly a quote from one of Katie's doctors.) Well, hey, if they aren't nervous, then I'm not nervous. Plus, the BMT doctors told me that she should be having scans and a bone marrow aspirate next week and the oncologist said no, not now. We are going to have a big pow-wow next week and get some things straightened out. Until then, we are going to have some fun. Tomorrow night, Katie and Daddy are bonding and I am going out with a friend who is attending classes at the National Advocacy Center - she's an attorney I knew in Utah.

Unless something major happens, we won't send an update until the end of the week. I have added lots more pictures to Katie's Zing album, and three new pictures to her website. Please check them out! The link to the Zing album is listed below.

Enjoy!

Love, Michele

Sunday, May 07, 2000 at 09:23 PM (CDT)

Hi, everyone. We have had several very good days. Katie is attempting to eat and doing pretty well at it. She is not nearly at the level before transplant, but I really have never seen her work so hard at something (except for mouth care!) She spent the weekend with Lakin and they had a blast. I had a weak moment when we walked into Lakin's dance recital. All I could envision was that Katie was not going to be in one this year and how much she enjoyed her past two recitals. It really kicked me hard in the stomach. It was such a joy to see her best friend have her moment in the sun, though, and Katie certainly enjoyed watching her.

Tonight we celebrated Monika's birthday with a dinner out, and Katie forgot to wear a hat into the restaurant. Of course, her head was cold, so she wore my sweater up over her head most of the time. Katie only wants to wear a hat to keep warm. I don't think her bald head phases her much. Have a good week everyone.

Love, Michele

Thursday, May 04, 2000 at 09:06 PM (CDT)

We had another exciting day. Katie had her last appointment with the bone marrow transplant doctors today! Yeah! From now on, she will be treated by her pediatric oncologists. We should have an appointment with them next week to discuss what comes next. The last part of Katie's treatment is accutane - generally used as an acne drug, but Katie will take six rounds of it (two weeks on, two weeks off for six months). Accutane hates neuroblastoma cells and it is considered the last "mopping up" of random cells left in her body. In the next few weeks, she will also have another round of scans and a bone marrow aspirate to see if they can detect any remaining tumor and/or cells. Our transplant doctor sent us downstairs for an appointment, but they didn't officially discharge her from BMT yet, so we couldn't actually make the appointment. By the way, her counts are pretty stable, and her platelets went up again. Her blood pressure was perfect.

When we got to the Cancer Clinic, we got to meet some Carolina Panthers - two players, two cheerleaders and Sir Purr. It was so awesome! Katie was scared, but she still got a t-shirt signed by the players (Walls and Woodall for football fans out there), a stuffed Sir Purr, and an autographed cheerleader photo (since confiscated by Mike!) Mike was bummed out - he was working and wasn't there. I don't think he will miss another appointment!

Katie is eating more each day, and she is loving salad with ranch dressing right now, as well as sweet things. We are going to attend Lakin's dance recital on Saturday, then the girls are spending the night together. They have missed each other a lot. Take care everyone!

Love, Michele

Wednesday, May 03, 2000 at 05:13 PM (CDT)

Hi, everyone. I know I said I wouldn't send an update out until after tomorrow's doctor's appointment, but I had to tell you all that Katie has eaten something at every mealtime since being taken off TPN. We are very excited. It isn't much, but she is making a supreme effort (as always), and she hasn't thrown up in two days! She wants to go out for dinner tonight, and she literally prayed that she wouldn't throw up. Now our grace before dinner includes: "and please help Katie not throw up." He has been listening! Take care everyone.

Love, Michele

Monday, May 01, 2000 at 08:36 PM (CDT)

We had a wild day, but a good one. Seven months, by the way - seven months ago today Katie was diagnosed with cancer. Time flies. Katie's doctor appointment went well - Dr. Chiang is on this week in the clinic and he was ready to move forward - in other words, take her off TPN. Yeah! So, now she is without TPN until Thursday to see if we can stimulate some type of appetite. She did eat a bit today. Also, she was taken off her blood pressure medicine and they are trying an antihistimine for her sinuses. And the best news of all - if she does well on Thursday, then we will be released back to oncology - quite a milestone. The only slightly bad news was that her platelets are even lower, but not low enough for a transfusion. Dr. Chiang couldn't think of an explanation except for maybe the high blood pressure medicine reeking havoc on the platelets, so let's hope they go higher on Thursday once she is off the drug (Norvasc, by the way). Dr. Chiang also approved three important things for Katie: a new dog for her birthday, a trip to school for the end of the year party, and a trip to Florida to visit Nanny and Pop-Pop.

We did end up rendezvousing with Riley and TJ, and I took two pictures and hope they come out. Riley and Katie then took a trip to Zany Brainy. It was loads of fun. I picked up a bunch of pictures today and will put some new ones on her website and on the zing album when I get a chance. Our next appointment is on Thursday - I'll send an update that evening. Take care.

Love, Michele

Sunday, April 30, 2000 at 08:30 PM (CDT)

Day +32 - Already!

Hi, everyone. The past three days have been quiet, but Katie was definitely more active and she ate a little bit. Her diet restrictions have been lifted (she was on a low-bacteria diet), and she desperately wanted to go out to eat, so we took her out for breakfast at her favorite diner. She had three bites of jelly toast and some orange juice, then promptly threw up all over the parking lot. All three of us have theories - I say the orange juice did it, Mike says it is the mucus from her sinuses, and Katie says it was her rotten tummy. Anyway, she ended Saturday with five strawberries dipped in sugar, so we were happy. Tonight she ate almost a half a grilled chicken breast! It took her an entire hour, but we didn't care!

Tomorrow Katie has a doctor's appointment. Also tomorrow, Riley has some tests and TJ, too, so keep the prayers flying tonight for our three neuroblastoma kids. They are all amazing. Hope you all had a good weekend.

Love, Michele

Thursday, April 27, 2000 at 09:02 PM (CDT)

Hi, everyone. Katie had a good visit at the BMT clinic today. Her blood counts are all great except for her platelets. They are a little low, but not low enough to have a transfusion. The doctor took her off all but one of her meds (the one for high blood pressure remains) and Katie was totally psyched. The doctor thinks that part of her aversion to food may have been the meds (they both have nausea as a side effect). Katie also gets to go without her mask except in really big crowds! Today she ate a piece of taffy, some cotton candy - her absolute favorite food in the world, and some corn and mashed potatoes for dinner. We couldn't believe it. She remains on the TPN at night, but only through the weekend. On Monday, we may take her off it just to see if we can trigger her appetite. Believe it or not, she has not lost any more weight, but she seems to have lost a lot of her muscle tone. She looks very lean these days.

I got an e-mail reminder today about thanking God for my blessings and I want to do it publicly. I thank God for each and every moment with this miracle child. Have a wonderful weekend everyone. For a break, I am going to take some time off from this update. I'll send an update on Sunday night. Take care!

Love, Michele

Wednesday, April 26, 2000 at 08:30 PM (CDT)

Hi, everyone. The last two days have been pretty quiet. We have been keeping an eye on Katie's temp - it is hovering between 99 and 100 degrees, but never over 100. The issue these days is still food. Tonight she claimed to want to eat, but when she sat down to do it, she took a bit of scrambled eggs in her mouth and chewed for fifteen minutes - she never swallowed. That was followed by a lot of tears and frustration, so we are back to square one. She can swallow liquids just fine, just can't seem to swallow anything else. Yesterday she even left the room when I made my lunch because the smell made her sick. We took a walk today and she made it longer than she has since we left the hospital. It felt great.

Katie had school today at the house for the first time in a long time. I think she really missed it. Mike turned 37 yesterday and Katie asked him if that was older than dirt. We laughed till we cried. She told us that I taught her that. I had a little explaining to do! We have another appointment at the BMT clinic tomorrow. I hope she has another good appointment. Take care.

Love, Michele

Monday, April 24, 2000 at 11:00 PM (CDT)

Hi, everyone. Katie had quite a grumpy start to the day, but I think we wore her out yesterday and we had to get up early to go to the BMT clinic, so she was justified. Her blood counts are ok. Both her hemoglobin and her platelets were lower, but not so low to have transfusions. Her white count is up to 7.3 - amazing. Since she still isn't eating - even the last popsicle was on Saturday - the TPN continues. She goes back on Saturday. Her energy is pretty low - a quick walk through the grocery store is exhausting. But Mommy took a nap today, and not Katie! Poor Mike had to go back to work. Katie was pretty ticked about not having him around to kick and complain about.

Love, Michele

Sunday, April 23, 2000 at 09:33 PM (CDT)

We had a very nice Easter, except Katie didn't eat a thing. She did drink half a Squeezit, though! Woo hoo. The morning started off with Katie throwing up her morning meds, but the day only improved. We went to Lake Murray to the Mason's house and spent most of the afternoon on the lake, fishing and cruising in their pontoon boat (we also had a wonderful Easter dinner - thanks Grammy Mason!). It was a little chilly, but we were all very happy to get out for a bit. The Easter Bunny visited our house and left tons of eggs in the backyard and even an Easter basket. Katie was very concerned that he wouldn't find her, because she had been in the hospital and he might look there first.

Every time I tried to thank God that we even had this day together, I got really choked up. She is a little miracle. Katie has an appointment tomorrow morning - who knows what they will do about her TPN. I think everyone hoped she would eat a little more this weekend. She told us tonight that her tastebuds are coming back, but only the ones that like popsicles. She can be such a trip sometimes. Take care, everyone. I hope you all had a wonderful Easter.

Love, Michele

Saturday, April 22, 2000 at 09:39 AM (CDT)

Hi, everyone. Sorry about no update last night - I fell asleep with our rugrat. She was so snuggly, I couldn't get up. Plus, the pump doesn't make nearly as much noise in the first hour, so it is easier to fall asleep. Every time it pumps, it sounds like a camera taking a picture. The first and last hours are tapered, so it doesn't go off as much. Anyway, Katie's last two days have been just fine - SHE IS EATING POPSICLES!!! We are so excited. The doctor and dietician said that she may be able to go off the TPN next week, because she seems ready to eat. She hasn't tried anything else, but will eat one or two popsicles at a time.

Katie's counts yesterday were wonderful - no problems there. She is getting back her terrible cough - typical Katie. They don't want to do anything about it, since it is not an infection. She didn't take a nap yesterday, but was exhausted all evening and yawned a lot. Mike worked outside yesterday afternoon, and usually Katie is attached at his hip when he does yard work, and she didn't even bother to go outside.

We got more good news on Friday - the doctor only wants to see us twice next week and maybe once the week after and then we will be released back to the Cancer Clinic. This is definitely very early, but since she is doing so well and we are treated at the same hospital, we can do it (BMT has patients from all over the world, not just South Carolina).

Take care everyone!

Love, Michele

Wednesday, April 19, 2000 at 09:30 PM (CDT)

Day +21

As usual, Katie proves me wrong! Her counts today were amazing - everything went up, up, up! Her white blood count is 6 (normal is between 4 and 12 - she hasn't had a normal white blood count since before her first chemo six months ago), her platelets were 103 (normal is 150-400 - this is amazing), and her hemoglobin was up to 9 (normal for Katie is a little over 10). She took another long nap this afternoon, and at the suggestion of a friend on this update list, we are attributing it to the total body radiation she received a month ago - something called somnolence syndrome. She didn't eat a thing today, in fact, she threw up her morning meds. She did better with the evening meds. Her TPN is hooked up and running as I type this. Our next appointment at the BMT clinic is on Friday.

We are all still adjusting to being home. I think I will skip the update tomorrow night, just to catch up on a few other things. I'll send one out on Friday night. Just remember - no news is good news. I learned that many years ago as a young military wife, and it really is true! Take care everyone.

Love, Michele

Tuesday, April 18, 2000 at 09:51 PM (CDT)

Day +20

Hello! Our first full day home was pretty quiet. Katie still isn't eating. She is drinking a little bit - she drank a whole Capri Sun this morning and another half tonight. She ate about a teaspoon of ice cream, but gagged at the thought of having some chicken broth. She really wanted our pizza, but when I cut a small bite she kept insisting she wasn't ready. She is hooked up to her TPN right now and is doing fine. She took a 3 hour nap this afternoon (a small miracle) and she even put herself to bed. I know it is because she is healing and just so tired from the past month.

We ran some errands today and saw MiMi and Grandpa off. Katie really enjoyed seeing all her grandparents these last few weeks and is making plans to go to Florida and Pennsylvania to see them. We haven't really been anywhere in the past six months, which is very unusual for us. I am still unpacking from the hospital - thank you again for all the gifts, everyone. We are opening our own Toys-R-Us franchise soon! Unfortunately, we don't have the same square footage as a Toys-R-Us store!

Tomorrow is Katie's first BMT outpatient visit. Based on her tiredness and her pale tongue, she may need some blood. We'll see. The visit could be anywhere from one to six hours. I'm hoping for the one! Take care.

Love, Michele

Monday, April 17, 2000 at 09:09 PM (CDT)

Day +19

We are home! Yeah! Katie was so happy - she hugged the car, then her seat belt. She looked gorgeous in her pretty pink dress. I took pictures and will post them when they are developed. We got home and Katie immediately wanted to be outside. We took a walk to the playground then I had to carry her back because she was so tired. She and I took a nap in the late afternoon and then Grandpa cooked us a wonderful steak dinner. Katie ate a bite of steak, a bite of salad, and a bite of potato. We are very very proud of her. Our nurses came and taught us how to hook up her TPN and it is running right now. She has a rash, probably from an antibiotic, and she is itchy but hopefully it won't bother her too much in her sleep.

We are heading for bed right now, happy to be home. MiMi and Grandpa leave tomorrow morning and then Katie has her first outpatient doctor's appointment on Wednesday. It is raining and I can't wait for sleep. Take care everyone.

Love, Michele

Sunday, April 16, 2000 at 10:25 PM (CDT)

Day +18

Hello everyone. This is Mike. If all goes well we will be going home Monday! YEA! Katie did really good today. I spend most of the morning with Katie. MiMi, Grandpa & Michele stayed home and cleaned the house. It looks really nice. Katie and I slept through the night. At about 7:30 this morning I woke up to find Katie standing next to me at my bed looking at me with a sad little face. I asked what she wanted and she said she was lonely. She climbed on the bed and watched TV while I tried to get some more sleep. I got about a half hour more of sleep before she wanted to go for a walk around the halls. She would peek around each corner to see which nurses were in the hall, then she would hide behind me run from the nurses. We played four games of checkers, which she won all but one game. SHE CHEATS!! Then we watched all her favorite cartoon shows.

Katie's counts are still good. She didn't need platelets or blood today. I tried to get Katie to eat today. She is really doing her best to eat but she's worried about getting sick. She'll come around soon we know that might take a little while. Her temp today was normal. Michele is going to spend the night. I wonder how that will go. I can't wait till we are all in the same house together. Take care everyone.

Love, Mike

Saturday, April 15, 2000 at 08:47 PM (CDT)

Day +17

Hi, everyone. This is Michele. Katie is getting stronger and stronger each day. Unfortunately, she is still not eating. I decided not to push breakfast at all. She seems to throw up a lot more in the morning. We had a wonderful morning together, though. She was unhooked at about 6:00 a.m. then I told her she could come snuggle with me. It felt so nice to hold her in my arms and take a little snooze, without bothering with the IV. We spent the morning playing games and doing puzzles, then lunch came. I turned to her and asked her what she wanted, and she literally retched right then and there. Apparently, even the thought of eating makes her sick. Even after being off the TPN all day, she still didn't want to eat. We have tried every food, every scare tactic and nothing works. The doctors are just hoping that when she gets home, something will appeal to her.

Katie's counts are still wonderful. She didn't need platelets or blood, in fact, her platelets doubled, so hopefully she is making those on her own. The rash on her face is almost gone, but it did leave a lot of marks that will heal in time. Her swelling is down (almost gone) and she just looks so gorgeous. She is laughing and talking much more, but still taking voluntary naps (highly unusual!) Her temp was normal today. Daddy gets to spend the night tonight and when I called a minute ago they were arguing about the TV - just like any other day. I can't wait to get her home! Take care everyone.

Love, Michele

Friday, April 14, 2000 at 09:15 PM (CDT)

Day +16

We got wonderful news today! Katie gets to go home on Monday, even if she doesn't start eating. She can be on her artificial nutrition at night at home. Her counts were great with a 3.9 (white blood count) & she didn't need platelets or blood. In fact, she was unhooked for most of the day. MiMi & I went shopping & Katie played with Daddy & Grandpa. even though it was a dreary day outside, it was a bright day with Katie's gorgeous smile. Take care.

Love, Michele

Thursday, April 13, 2000 at 10:33 PM (CDT)

Day +15

Hi everyone. This Is Mike - This will be a short update. Katie had a pretty good day today. Katie's white blood count stayed at 3.7. She didn't need platelets or blood today but may need them tomorrow. Today we talked to Dr. Chang about Katie and her progress. He said that they are stopping one of Katie's anti-biotics and she will only get her tpn at night. They want her to start eating food on her own. She really tries but is afraid that as soon as she eats she will throw up. She also had a fever today and her blood pressure was high but not as bad as it's been. This morning she ate jello and did well with it so we thought. She sneezed then coughed a minute or two later and threw up. Last night Katie sat on the couch with me and ate almost a whole container of Jello and she wanted me to rub her feet at the same time. The good part besides the snuggling was that her jello stayed down! Then she said ok Daddy turn off the TV it's time for bed. It was only 9:15. She acts sooooo cute for a very sick little girl. As usual she is doing a great job at her mouth care and her mouth looks alot better.

Today about 2:00 PM Mimmie & Grandpa drove down from Pa. to spend some time with us. Now I'm in trouble because they take Michele's side in everything we talk about. Along with the luggage they brought a few thing for Katie. She got some pretty clothes and she got a red cowgirl hat. Now as she said she will look like a real cowgirl.

I have to get going to bed now, I have to work tomorrow for 4 1/2 hours. I get 10 days of leave without being charged then I have to work one day then I can take another 10 days of leave, then work one day and then 10 more days off if I need them. For me 4 1/2 hours is one duty day of work. I wish I didn't have to work the day in-between the leave days, I'm at work and all I think about is Katie and what she is doing. It's 11:16 P.M. now. I'm going to try and get to work at 4:30 am so I'm out by 9:00 am and I can get to the hospital to be with Katie and Michele. The last time I went to work Katie kept saying where is my daddy... I miss my daddy...and I got a big hug when I got to the hospital.

Take care everyone and thanks for all the prayers.

Love, Mike

Wednesday, April 12, 2000 at 04:59 PM (CDT)

Days +13 and +14

Hi, everyone. The past two days have been pretty quiet. This is Michele - I came home early tonight to do a little cleaning and a little resting. Yesterday Katie slept most of the day - her white blood count was 2.7 and she didn't need blood or platelets. She spiked another fever, and still wouldn't eat anything. We had a good night together, and she is now peeing enough that they don't have to give her Lasix. Her blood pressure is still high and she is now getting medication more often to bring it down.

Today, Katie's white blood count was 3.7! She is amazing. She really smiled this morning when I told her how proud we all were of her. She didn't need blood or platelets again today! She stayed up and moving for several hours and then took a nap this afternoon. This morning, Katie's godmother Debbie stayed with her while I got a massage (thank you JulieMarie and Debbie the massage therapist!) It was positively wonderful. Katie tried to eat this morning, and threw up almost instantly. Dr. Chang and Karen Goon-Johnson (Katie's doctor and nurse practitioner respectively) have given us our challenge: no fever for 2 days and eating regular food then Katie can go home. Her little foot moved all day (Katie's sign she doesn't feel well), and she would barely talk. I just spoke to Mike and Katie and they are going to try some Jello for dinner and then go to bed early.

I have the best story from yesterday. Miss Baby South Carolina came to visit us - Mame Elizabeth Wedlock (hope I got your name right, little one!) She is a doll, and her mommy is great, too. They gave Katie the baby's trophy, crown and sash (the sash says "Queen") and are going to compete in the national pageant in Katie's honor. Yesterday, Nydia, Katie's nurse, made her bed after her shower and put the sash and the crown on Katie's pillow. It is very fitting. Katie's smiles are coming a little more often now and she is teasing us a little bit. Every day she gets a tiny bit better. If we can keep the fever at bay and get a little bit of real food into her, she will be home snoozing in her bed very soon!

Take care everyone.

Love, Michele

Monday, April 10, 2000 at 09:02 PM (CDT)

Day +12

Hi, everyone. Katie got to leave her room for the first time in two weeks today! She wasn't even excited about it. She still feels pretty yucky. She is still vomiting and has diarrhea, plus high blood pressure and she is retaining a lot of fluids. We went for one short walk, then I think she realized how wonderful it was and we went for a whole loop around the unit. Tonight will be her last night on morphine - they turn the volume down every eight hours now and she hasn't complained of pain. She is still doing everything we ask of her, and then some.

Tonight Katie looked into the mirror for the first time in awhile and told us that she scared herself. Her eyes are almost completely bloodshot from all the coughing and vomiting and she is very swollen. Mike was holding her and they stood that way for awhile. A little while later we had a ticklefest - one of our favorite things to do. It developed into a beat Mommy up with the pillows-fest and we all laughed really hard. It felt wonderful!

The best news of the day - a white blood count of 2.1! That is wonderful. Normals, by the way, are 4.0 to 12.0. Her hemoglobin was 10.8 (normal for Katie, still a little low for the rest of the world), and her platelets were 60 (normals are 150 to 400). The numbers were a good thing for an important reason - that line that sprung a leak last night wasn't repaired until late afternoon and it still can't be used for another 24 hours. The nurses were juggling meds and artificial nutrition with the one line she had left and still managed to get everything in on time. Her care has been wonderful and my hat is off to everyone at the BMT unit.

I have to run and get my house back together, oh yeah - and get some sleep, too. Thank you again for all the prayers, gifts, visits, and hugs.

Love, Michele

Sunday, April 09, 2000 at 9:44 PM (CDT)

Day +11

Hello everyone! ONE POINT THREE!, ONE POINT THREE!, that's what her white blood count is up to. Today Katie was given blood and platelets which she slept through. Katie's Doctor (Dr. Chang) said that if her white blood count goes up a little more he is going to let her get out of the room and walk the halls of BMT. That's WALK the hall not RUN it. When we told Katie what he said she was like "what ever" and went back to sleep. Today that pretty little face and her eyes were really puffy because she is retaining water. The doctors and nurses are still fighting Katie's high blood pressure. It's slowly coming down. They are still giving Katie Lasix on and off to help her pee and get rid of the water she is retaining. Today she was sitting up on the couch and then she sat on her bed and put a puzzle together. She is still doing a great job at mouth care even though it hurts so much. With the old skin sloughing off I know her mouth hurts. She still gets up and does everything we ask. She is such a big girl.

I just got home (it's about 8:30 PM) and Michele just called me. Katie's temp jumped up to 101.2 and they found a pin hole in her central line (that's the line that's in her chest where she has blood drawn and drugs given so they don't have to stick her everytime) Michele told me that the nurses said the line could be fixed.

Michele's Dad drove up from Florida today so her Mom and Dad are going back on Monday. We have had a lot of fun with Mom being here and she has been a big help. They went home early tonight to help us get ready for the guys who are going on Monday to clean the carpets. My parents should be here Wednesday or Thursday for about a week.

Goodnight everyone. Time for me to get to bed.

Love, Mike

Saturday, April 08, 2000 at 10:31 PM (CDT)

Day +10

POINT NINE! POINT NINE! POINT NINE! As usual, Katie exceeds all our expectations. Her white count in now .9 and her hemoglobin improved as well. Katie got some platelets today because those fell to 11 (normal Is 150, by the way). It was a quiet day. The battle now is stabilizing her blood pressure and urine output. Her blood pressure is running high. The most probable culprit is fluid retention, but it could be her half working kidney. The nurses & doctors are on top of it and are monitoring her closely. Katie is still sleeping most of the day, but does wake up every few hours to watch a little TV or play some cards.

Funny story - Katie has been very sensitive to noise & light lately. Last night at 3:00 am, after Nanny THOUGHT Katie was sound asleep, Nanny had the nerve to eat some Fritos. Katie sat straight up in bed, told Nanny she could have 2 more bites then told her she needed some rest. Katie knows best!

Love, Mike & Michele

Friday, April 07, 2000 at 09:53 PM (CDT)

Day +9

Hi, this is Michele. I just read Mike's e-mail from last night, and he sure seemed tired. We are all beat. Katie's problems with the potty have been kind of resolved. Today after some Lasix she got rid of half of the fluid she is retaining. Her weight was up to 49 pounds and she was so swollen in her face. As of this evening, she lost two pounds and looks a little better. Her eyes are bloodshot from all the coughing and now her face is peeling and dry. She slept the majority of the day, more comfortably than we have seen in a week. Her blood pressure is high and they are treating that with another drug. It fell to normal limits by this evening, too. She didn't need blood or platelets, and I know Mike e-mailed everyone about her wonderful white blood count of .4! We are all taking bets on what it will be tomorrow - Katie says .5, Mike says .6, and I say .7.

She still does her mouth care, but it is pretty painful. The skin in her mouth is sloughing off and the new skin underneath is very tender. She does anything we ask of her, though. She even woke up today to have an egg hunt in her bed, thanks to Melanie. By the way, Mel, she was sleeping with the yellow Silly Putty when we left! This is Nanny's last night with Katie. She is leaving for Florida on Monday (Pop-Pop arrives on Sunday). Nanny bought Katie the prettiest pink dressy dress for her trip home from the hospital. Every time Katie is awake, she asks to look at the dress. Today she was worrying about accessories (tights, shoes, jewelry). I know she is feeling better when she starts talking about dresses!

Good night everyone.

Love, Michele

Thursday, April 06, 2000 at 10:12 PM (CDT)

Day +8 Apr. 6, 2000

Hello everyone. Today was a pretty good day for Katie. We all think she is on the turn around.Her white blood count is still at .1 - no slippage, just hanging in there. Her potassium today was 6.8, that way to high actually that's in the danger zone. The nurses hooked Katie up to Dr Chang's concoction in the morning that would help that count come down, by right after noon it was 4.3. She also got platelets today. We noticed in the early afternoon that Katie asked for something to drink. Katie had four cups sitting around the room, they each had something different in them. Coke, Pepsi, Sprite, Water. Each time she wanted a drink it was something different. She also asked form something to eat. She wanted candy. Katie had to have a tootsie roll. She took one bite of it and screamed take it out when it hit the inside of her mouth. She keeps asking for some food but we have to sit and figure out what she can have to eat. Katie want her pink milk but that's too hard on her tummy right now.

Katie has been spitting up a lot of mucus lately. It's all from the dead cells that are just hanging around her throat. She was spitting up blood with the mucus but now it just clear mucus. They are still trying to juggle the meds because Katie is still having bad diarrhea.They are slowly cutting back on her morphine. Today because of the high amount of potassium the docs were concerned about how much she peed. It had been almost 12 hrs since she last peed. It wasn't enough so they cathorizied Katie for urine. She was sooooooo brave when they did that. We will have to wait and see what the outcome is, if they feel they got enough urine out. We are all concerned about her kidneys since the right upper part of the kidney died after surgery. We will let everyone know how that went.

Well my brain is starting to fall asleep so I'm goning to bed. Take care everyone and thanks for all your thoughts and prayers.

Love, Mike

Wednesday, April 05, 2000 at 09:49 PM (CDT)

Day +7

Hello. Katie's day was pretty awful. Her white count is still at .1 - no slippage, just hanging in there. The best thing about today was that there was no line juggling. She needed no replacement electrolytes, no blood and no platelets. It was just standard antifungal medicine, antibiotics, fluids, and artificial nutrition. She is still doing exactly what they expected. In fact, when my mom left to get some dinner, she rode the elevator with her doctor who said, "Remember, as sick as Katie is, she is doing well." Before we left, Katie got a breathing treatment. She has tons of mucus just sitting in her throat and her snoring is so loud you can't hear the television. Not that we ever have it on - Katie demands (and receives!) complete dark and quiet.

Our night together last night was constant suction for her mucus and trips to the bathroom. She is retaining fluid and was given some medicine for that - meaning hourly trips to the potty. Today she slept until late afternoon, then got up for a little while to watch some TV. Mike was curled around one side of her and she made him wrap his arms around her, then she wanted my head on her pillow on her lap. We made one sweet little group. Of course, I had to boo-hoo. Everything we ask the child to do she does, with barely a complaint. She still did her mouth care today, even though her sweet face and tongue are so swollen. Everyone tells her what a wonderful patient she is, and in her gravelly sore voice she'll say, "Better than grown-ups?" and they all laugh. She is such a wonder.

Take care everyone.

Love, Michele

Tuesday, April 04, 2000 at 10:23 PM (CDT)

Day +6 Apr 4, 2000

Hello everyone. Katie had another rough day. She is still doing awesome at mouth care even though her mouth and throat are swollen. Her little cheeks and the area around her eyes are puffy. She looks like she can barely keep her eyes open. Her temp was checked at about 6:00 PM and it was 104.1 then it dropped to 102.1 Her doctor said that may be the turning point for her white blood cells to start rebuilding.

Katie slept most of the day but when she woke up she was pretty good. Christy brought us dinner. Christy sat with Katie and watched her make a book for Baby Will. Katie did pretty good at that. Godmommy came by and took Nanny out to dinner, they had fun and it was a nice break for them.

Yes, Katie is still a very sick young lady but this is all to be expected. We are hoping she will start her turn around in getting better. She is so sick but still does everything we ask of her. Today she had to go potty and wanted me to carry her to the bathroom. She put her head on my shoulder and patted my back, that felt good.

Time for me to get to bed. I'm sitting here falling asleep. Take care and thanks for the prayers, gifts, cards, & food

Love, Mike

Monday, April 03, 2000 at 10:13 PM (CDT)

Day +5

Today was a really rough day. Katie is feeling just awful. This morning at 5:00 a.m. she was hit with diarrhea, vomiting, throat and belly pain all at the same time. Her platelets were holding steady at 30 today, so she didn't need them. She did need a blood transfusion. Her little tongue pinked up in no time. Unfortunately, the doctors also changed some of her meds so the nurse was juggling lines all day. Today Katie needed three replacements (phosphorus, magnesium and something else I can't remember), blood, morphine, artifical nutrition, fluids, two antibiotics - I know there is more, I just can't remember. We had to unhook the morphine for a little while and it proved to be too much, so off went something else. When I got in the truck to go home this evening (Mike was driving, Nanny stayed), every time I closed my eyes I saw her throwing up or having diarrhea.

This is the worst of it, still totally expected. I swear. They have run blood cultures two days in a row because of her fever, but they are all negative. She is still amazingly cooperative. Today she got up from a deep sleep to get a shower, do her mouth care, and have her central line dressing change. She was shaking so hard from being weak and being on cyclosporine that she could barely stand, but she didn't make a sound. Katie even smiled to hear that the grown-ups in BMT won't get up to do half the stuff she does. She even wanted to do extra mouth care today because her mouth hurt so much and she knew it was supposed to make it feel better.

She is horribly grumpy (totally understandable) and has nuclear meltdown over the simplest things because of all the narcotics she is on. She sobbed today over my singing the wrong words to one of her favorite songs and to me turning off the TV while Jill was in the room.

This will go on for a few more days, then her little body will begin making white blood cells and we can all give a collective sigh. For tonight, I just popped a Tylenol PM and am hoping for some sleep. Katie snores like a truck driver now and she lost all of her little whispies on her head but she's still the most gorgeous girl I ever saw.

Thanks for all the prayers, gifts, cards and food!

Love, Michele

Sunday, April 02, 2000 at 11:04 PM (CDT)

Day +4 Apr 2, 2000

Hello everyone. Katie is now very sick & only conscious for short periods of time. She is running a temp and is now on a higher dose of morphine. She complains a lot from throat and stomach pain. Her platelets this morning were only 14 so she got another bag today. This time, her count went up to 64. She didn't get blood yet - she is holding steady at 8.0 on her hemoglobin

For those on this list that haven't been through this, all of Katie's problems are completely expected. her doctors still only spend a minute with us, say she is doing well & order the appropriate medications. A few more days of being sick & she will start making white blood cells, solving her aches & pains.

Visitors right now are hit & miss - we can't tell you one minute to the next whether she'll be awake. By the end of the week we hope she feels 100% better

Take care & thanks for all the prayers

Love, Mike & Michele

Sunday, April 02, 2000 at 11:04 PM (CDT)

Day +4 Apr 2, 2000

Hello everyone. Katie is now very sick & only conscious for short periods of time. She is running a temp and is now on a higher dose of morphine. She complains a lot from throat and stomach pain. Her platelets this morning were only 14 so she got another bag today. This time, her count went up to 64. She didn't get blood yet - she is holding steady at 8.0 on her hemoglobin

For those on this list that haven't been through this, all of Katie's problems are completely expected. her doctors still only spend a minute with us, say she is doing well & order the appropriate medications. A few more days of being sick & she will start making white blood cells, solving her aches & pains.

Visitors right now are hit & miss - we can't tell you one minute to the next whether she'll be awake. By the end of the week we hope she feels 100% better

Take care & thanks for all the prayers

Love, Mike & Michele

Saturday, April 01, 2000 at 11:00 PM (CDT)

Day +3 Apr 1, 2000

Katie had her first platelet transfusion today and it went fine. Her little mouth looks horrible and she is in pain from the sores in her esophagus. She is still vomiting often and she is now on Ativan to help with that. She was up for the majority of the day playing with us and watching TV. She fought off Benadryl (along with Ativan & Morphine) to watch her favorite show then got a major case of the grumpies because she was so tired.

Katie has been asleep since 5:00 p.m., probably from sheer exhaustion and all these drugs. She is at her yuckiest right now, but nothing that is happening is unusual. We were laughing today about a BMT doctor's definition of "doing well". Katie is doing well according to her doctor - vomiting often, mouth & digestive system full of sores, low counts, 5 IV pumps running. She still has enough energy to smile when we beg. Take care everyone.

Love, Michele

Friday, March 31, 2000 at 09:40 PM (CST)

Day +2

Hi, everyone. Katie had a rough day, but everything that is happening is to be expected. She had a decent morning and a decent evening, but everywhere in between she has been vomiting and in pain. She doesn't have any mouth sores, but she has sores in her esophagus and in her tummy. She is now on a constant morphine drip, but it is low enough that it only makes her slightly loopy and not sound asleep all the time. She has five IV pumps running at the same time, and they carry an assortment of artificial nutrition, replacement electrolytes, anti-fungal and antibiotic drugs, fluids, and morphine.

In between all of this madness, she played with Jill the child life specialist, received a special gift (Pooh flip flops) for doing so well on her mouthcare, painted, did crosswords with Nanny, watched TV, and pretended to be Daddy on the phone. Her counts are very low - she will most probably receive platelets tomorrow, but the blood is on hold because for some reason, her hemoglobin is going up. Her white blood count is still non-existent, and will be for at least a few more days. Overall, we think she is doing beautifully well. Her doctor spends about a minute and a half in the room, and walks out saying, "She's going great, she's doing great..." Katie can't stand him and poofs him out of the room with her magic wand. He will only leave if she says please. They had a pillow fight today and she examined his mouth after he looked at hers and declared that the doctor's mouth was nastier than hers. I have no idea why she doesn't like him - he is very nice and loves to tease her.

Mike is staying tonight. Apparently, in two days he grew up and became a nurse. Take care everyone.

Love, Michele

Thursday, March 30, 2000 at 10:30 PM (CST)

Day +1

Hi Everyone! Katie had a pretty good morning. Katie actually wanted to eat breakfast. She wanted the shrimp that Michele & I brought in. Yes she had shrimp for breakfast. She did pretty good in the morning. Jill The Child Life Specialist came by and Katie painted some Easter eggs for her Easter basket. I really hope we are out of BMT by Easter. Her afternoon and evening were really yucky. Her tummy and her throat started to hurt so she didn't feel like eating. Katie was put on Phenergen for her tummy pain, so she was a sleep for about three hoursin the afternoon. She is now on TPN ( liquid food) but they didn't have to start another line, they are using the ones she already has.

Her counts are very very low so she may need blood and platelets on Saturday or Sunday. Since she is starting to have pain in her throat morphine has been ordered and it's ready when ever she needs it. her mouth is getting really junky, but she is still doing a great job at her mouth care. As far as we can tell she doesn't have any mouth sores but we think she has some down in her throat.

I hope tomorrow will be a better day. I know there is a lot more to say but I can't think of anything else right now. My brain is a sleep. Thanks for all the messages and prayers

Love, Mike

Wednesday, March 29, 2000 at 09:37 PM (CST)

Day 0

Today we added another celebration day to our already long list - Gotcha Day, Adoption Day, Regular Birthday and now Stem Cell Birthday! It was actually one of the best days we have all ever spent together. Katie slept the entire night through, very comfortably. Her temp never went over 99 degrees. At 5:30 a.m., she got up to potty, then started to talk. I laid down with her to quiet her down and get her back to sleep, but she was having none of that. We sang and talked for 45 minutes about nothing and everything, then the nurse brought her a Capri Sun (drink) and she slurped it down like a pro. She didn't drink that much in the whole day the day before. The nurse asked me if I wanted anything, and I asked for the remote! She absolutely refused to have me go to sleep, so we got up and started to paint and draw and play school. By the way, Miss Knepp, she worked through two entire K-1 work books today.

Katie actually ate breakfast - cheese grits - something she would never eat any other day, then she donned her Cinderella wig and crown and began to hold court. She knew how special this day was to everyone, especially to her. At about 10:30, the nurse brought her some Tylenol, Benedryl and Hydrocortisone. Then at 11:00 a.m. she got back her stem cells. They were in four bags, and they went in pretty fast. Katie got very quiet, but she never threw up like everyone warned us she would. She complained of the smell immediately, but we gave her Juicy Fruit gum then a cherry lifesaver and she didn't complain after that. I have not smelled the garlic at all - neither has Mike, but my mom can really smell it. Katie then took a 3 hour nap, woke up and decided the play the rest of the day.

She was up and dancing when Faris arrived with our dinner (thanks - it was awesome Senate Research!) We were all trying to decide who should stay the night and Katie wanted me, then Nanny if I had to go home. Mike was a little hurt and asked her if there was anything he could do to get her to ask for Daddy to stay and she told him, "Well, you could grow up and become a nurse, then I'd let you stay." We laughed till we cried. She was like that ALL DAY.

Katie is not eating. Nothing tastes good and she has no appetite. Each day we get a visit from the dietician who is not very concerned, but I have a feeling the artificial nutrition (TPN) is on its way. Today I tried to get Katie to eat just something for dinner, and I made her beloved dinosaurs. She took two bites, spit them both out, and wouldn't even be persuaded to eat when I informed her that she might have to be stuck with another line for the TPN. She has only lost three pounds, but she is now only taking in about 100 calories a day - not enough. Her little bottom now has sores and we are coating it with lots of cream to make it easier to go potty. She still adores mouth care and actually looks forward to doing it (she has to brush with a salt/soda/water solution then swab with a prescription mouthwash). She doesn't have one mouth sore yet. Her blood counts are very low - her platelets are now 79 and her white blood count is .1 (yes that is POINT ONE). She has basically no ability to fight infection. If you are planning to visit, please make sure you feel totally healthy and have not been around anyone who is sick.

I just with I could convey to all of you the absolute joy and ease of this day. I know it is because everyone was praying for her to get through this day. She did beautifully - much better than expected. We took a bunch of pictures with the digital camera today. There are three new pictures here on the website. I know I am forgetting all the great things that happened today, but just know this - Today Was Good.

Love, Michele

Tuesday, March 28, 2000 at 10:30 PM (CST)

Day -1 Tuesday Mar 28, 2000

Hi, everyone! Michele & I got to go home last night! Michele's Mom is here helping us out so she stayed for the night. We were just talking about how Michele's Mom was going to have the easy night. They cut back on the rate of Katie's fluids and she doesn't have to get up every hour to go pee. So we figured they would be able to get a good night sleep. Wrong, about 20 minutes after we left that all changed. Katie was laying in bed she sat up and said "Nanny" then threw up. There was no warning on that one. Katie figured out it was the pink milk that she drank about an hour before. Well, Donna (Michele's Mom) and the nurse cleaned her up and got her back in bed. Shortly after that Katie sat back up and yelled Where's my barf bucket & she got sick again. She ended up getting sick a total of 4 times during the night and she said her tummy hurt a lot. She ended up getting Zofran and then Phenergen to help her tummy and to get rid of the pain. She hasn't felt like eating anything because she is afraid of getting sick again.

When Michele & I saw her in the morning she gave both of us hugs and of course wanted Mommy. As the morning went on she perked up a bit. She sat up on the couch and watched TV with Michele. Her food tray arrived and Katie didn't want to have anything to do with it, so we talked to her about what she wanted to eat. Jelly toast? No! Cereal? Hmmm? Yes! she wanted some Frosted Flakes. So I got her the cereal and she took three bites....then threw up! Katie got upset, we calmed her down. She looked up at us with a sad face and said, "This cancer is all my fault" We all gave her hugs and said it's not your fault it just happened this way. Then she got little tears in her eyes and said, "Cancer is sure hard work" I said yeah and that we were going to kick the cancers butt and get rid of it and that there are a lot of people working hard with us to help get rid of the cancer. We told Katie that she will get very sick before she gets better. This is the way it works when it comes to getting her all better.

On Wednesday she will get her stem cells back. She should get them back about 11am. So starting Thursday that will be day +1 Michele said from day +2 to probably +9 she will be really sick since her immune system is building itself back up. Katie getting sick is totally to be expected. The doctors said it was about a day early, but they knew she would get sick. After all she has been through she is really doing good.

Time for me to go to bed. I have to keep my health up so I don't get sick. Take care everyone and thanks for all the prayers

Love, Mike

Monday, March 27, 2000 at 09:50 PM (CST)

Day -2

Hi, everyone! Katie had another quiet day - a tiny bit better than yesterday, but not much. Her diarrhea is under control now, probably because she has quit eating, almost altogether. I did get her to eat the white part of a hard boiled egg for breakfast. Lunch was non-existent, then she had three bites of chicken and a fruit rollup for dinner (by the way, fruit rollups are now an obsession - she has finished almost two boxes in the time she has been an inpatient). She really had no tummy pain until lunchtime, then it really hurt and she got some Phenergen. She was asleep in about four minutes. We had Debbie laughing because as soon as it was announced that she was getting Phenergen, we got her up to pee, do her mouth care and her breathing treatment and settled into bed. We call it the "Phenergen shuffle." She slept from 1:00 until about 4:15 p.m. Katie's blood counts are still ok, but they are on the way down.

Today was significant - hopefully it is the last time her little body will ever get chemo. Tomorrow is a day of rest, then she gets her stem cells back on Wednesday. It is a 20 minute transfusion, much like a blood transfusion. She could get sick on the smell/taste - often described like garlicky creamed corn. The smell is from the preservative used to keep the stem cells healthy. The child life specialist stopped by today and said that we are going to be throwing a party! Woo hoo. Just hope Katie is awake.

The last time her temp was checked it was 99.2. It might be on the way up from a number of things. Every side effect she has had (and they have been minimal) has been typical of treatment. Mom stayed tonight and Katie's nurse is a former BMT head nurse from Pittsburgh. I think she is in safe hands. Mike and I are trying to stay strong and healthy because she is about to get pretty sick. I may not be as cavalier about leaving as I am right now. Actually, though, I'm having a big attack of the guilts. Katie is completely and totally amazing.

Take care everyone.

Love, Michele

Sunday, March 26, 2000 at 09:07 PM (CST)

Day -3
Hi! Katie is slowing down. She was pretty quiet today. She woke up with a sore tummy and she got some Phenergen through her IV. She fell asleep in about three minutes. She spent most of the day on the couch watching TV and going crazy waiting for Nanny and Pop Pop to arrive. She asked for them, literally, every five minutes. When they finally arrived, she promptly fell asleep. Katie tried to eat dinner, but had a sore tummy again and she got more Phenergen. She has also started to have diarrhea today. She did keep up her trips to the potty every hour and a half. Her blood counts haven't fallen that much - in fact, her platelets are still way above normal.

We watched for her commercial, unfortunately, the one that was aired at 4:30 p.m. was the one she isn't featured in. Mike caught her commercial at 9:20 p.m. Katie was sound asleep and the rest of us were driving home. I hope someone else watched it. Mike said she was adorable. It was kind of fitting though that her commercial was aired during the Oscars - because she will be sure to win one someday.

I am beat and need to get some sleep and visit with my parents. Pop Pop is going home tomorrow and Nanny is going to stay for awhile. Take care everyone.

Love, Michele

Saturday, March 25, 2000 at 10:30 PM (CST)

Day -4 Mar 25, 2000

Hello everyone. Katie had another wonderful day. Today she started Chemo, that went fine. She still has lots of energy and really hasn't taken any kind of nap. Katie continues to do a great job with her mouth care. We are sooooo proud of her.

Since she started the chemo she has to pee every hour on the hour for 2 days. That may make for a couple of sleepless nights. Also because of the chemo she is starting to lose the little bit of hair she has. Michelle and I got to go out for dinner again. our friends Michele & Brian came by and watched Katie for a little while. As soon as Michelle and Katie got together, they were plotting to get Brian. They did, they painted his finger nails. They looked so pretty.

Katie gets the same chemo tomorrow. Thanks for all the prayers, thoughts, & mail.

Take care everyone.

Love, Mike

Friday, March 24, 2000 at 08:52 PM (CST)

Day -5

Hi, everyone! Katie had another wonderful day. This was the last day of her total body radiation. Her therapist, Susan, bought her the Rugrats CD as a congratulations gift. Susan wants her to come down to radiation and teach the adults how to do it. I just wanted to give a great big THANK YOU to everyone in radiation oncology at Richland Memorial. From doctors and physicists, to therapists, to receptionist - everyone was friendly, helpful, and never ONCE made us wait for an appointment. They are wonderful.

Katie did experience a side effect of the radiation today - she took a one hour nap this afternoon. And that was it! Unbelievably, her platelet count has gone up (pretty weird), but her white blood count and hemoglobin are both coming down:
Platelets: 213 (up from 187)
White Blood Count: 1.6 (down from 2.0)
Hemoglobin: 9.9 (down from 10.3)

She will need a platelet transfusion when they get down to 20, and a blood transfusion when her hemoglobin gets down to 8 - although Katie Krize with a hemoglobin at 8 is still as energetic and bubbly as any other day.

Let's see - funny things that happened today - she got me completely soaked during HER shower (she loves that removable shower hose), she put her little stuffed frog in her sock for most of the day, and she put a leash on me and made me act like a dog all the way back from radiation.

Tomorrow starts the chemo at 10:00 a.m. - that is when she gets cytoxan, then at noon she gets carboplatin. Keep the prayers coming that she breezes through chemo the way she did through radiation. Take care everyone.

Love, Michele

Thursday, March 23, 2000 at 10:30 PM (CST)

Day -6

Hi. Everyone! This is Mike writing the update tonight. As Katie would say, I'm doing this by my ownself. I hope I do ok. She has completed another day of TBI and she did great. She stood real still looked so proud of herself when she was done with the session. Now she has this little plot going in between doing her front and back scan, she will sit on my lap and want her feet massaged. Of course I do it with out any question. So far we haven't seen any side effects from the radiation. We did see her lay on her bed for about 5 minutes looking sooooo tired, Michele & I both asked her if she was ok. 5 minutes rest and she was up and running again.

Riley West and his Mom stopped by to see Katie. He's doing great. Riley and Katie played alot and we had to keep reminding Katie that she is "hooked up" to her IV. JulieMarie stopped in and Katie got her to play a few card games. I couldn't figure out who was cheating this time, Katie or Michele! Godmommy stopped by and watched Katie so Michele & I ran out to get some dinner.

She is eating well. Again today all she wanted to do was eat fruit rollups for her snacks. She is going a great job on her mouth treatments. She made a big deal about having to remind me that it was time for her morning treatment. Yes, Katie wants to do all of that herself too. She told me I can open the brushes myself and pour the salt and water solution in the little cup. She said, "Daddy I'm 5 I pour my own juice at home" She's 5 going on 16!

Michele stayed tonight. I hope that went ok.Thanks for all the messages and prayers

Love, Mike

Wednesday, March 22, 2000 at 09:06 PM (CST)

Day -7

Hi, everyone! Katie is doing great, getting a little restless already, but overall she is wonderful. She had her first total body radiation treatment this morning. It took forever because the machine wouldn't take an x-ray at first, so we had to wait for it to get fixed. Then she had to take numerous x-rays and do the actual treatment. She was still as a statue, though, and did beautifully. Katie also adores everyone in radiation, so she had little problem doing everything they asked.

Her second treatment this afternoon was much quicker and she did very well again. So far, she hasn't had one side effect. She is getting antsy, but got to play with Vicki, Godmommy and Ben today, as well as Jill the Child Life Specialist (one of Katie's favorite people!) We had a problem since admission getting Nickelodean on the TV, but that was fixed today, also (thank goodness.) Katie without Nick is a nightmare. Her room looks awesome. The moo cow lights so far are everyone's favorite.

Katie wouldn't speak to her doctor at all, but did talk to her nurse practitioner. She is eating pretty well right now, but this is just the beginning. We had to fight with her to eat her dinner, then all she wanted was fruit rollups. She absolutely loves doing her mouth care for some reason. She has to brush with salt and soda water, then rinse with a harsh mouthwash four times a day. We just hope that when she gets mouth sores, she will still be enthusiastic about the mouth care.

I know I have a million things to tell all of you, but they just aren't coming out. She is still feeling great and she looks gorgeous. Mike is staying tonight, and I am heading for bed. Thanks for all the messages and prayers.

Love, Michele

Tuesday, March 21, 2000 at 10:30:11 PM (CST)

Day -8

Katie had her total body radiation set-up this morning and she is all ready to go for tomorrow. We spent the day decorating her room & meeting everyone in the BMT unit. My poor Mike had worked all night so he had to nap this afternoon in the hospital.

Katie's is in Room 7510. This is the address:

Katrina Krize
Palmetto Richland Memorial Hospital
Seven Richland medical Park
Room 7510, BMT Unit
Columbia, SC 29203

She feels great, but is already driving us crazy in her confinement. We'll send more details tomorrow.

Love, The Krizes

Monday, March 20, 2000 at 09:16 PM (CST)

We finally got the go ahead to be admitted for Katie's stem cell transplant. Katie did have a very slight staph infection, but since she has been on antibiotics for five days, is asymptomatic and everything else was negative, the transplant docs gave a thumbs up. Katie goes in tomorrow morning to prepare for total body radiation - they teach her how to stand and they make the marks on her body to fit the machine, then she will be admitted upstairs on the fifth floor in the bone marrow transplant unit. On Wednesday, she will begin her total body irradiation (TBI). She will have TBI twice a day for three days, then she will have four days of chemo, then a day off. On Thursday March 30th, she will receive her own stem cells back. The transplant is actually just a transfusion. Then we wait for her counts to go up. Each day before the transplant is referred to as a negative day, so tomorrow when Mike sends out the update, it will be Day -9. Day 0 is the day of transplant and everything after that a + day.

It is really time to get this over with - let me tell you why. We are about to be kicked out of Richland Memorial. We waited for over an hour to see the ENT today. In the meantime, Katie made friends with a little girl who actually had the appointment before us (they were waiting more than an hour, in other words). Well, they kept getting louder and louder - eventually they were taking turns dancing and beating on a box. The receptionist actually got another patient to come over and tell us to tell the girls to keep it down. I told the woman to tell the receptionist that if we could actually be seen at our appointment time, things like this wouldn't happen. So, the woman relayed my sweet message and the receptionist started to glare at me. I walked over and asked her if she had a problem, and she told me that the girls would have to keep it down. I asked her why we hadn't been seen in an hour, and she gave me some song and dance. Next thing you know, Katie's name was called - even before her friend. I know all my frustration at this delay poured into my attitude today, and usually I try to keep a tight reign on Katie's behavior, but I had had it. You rush to get to an appointment only to sit and wait. I'm sick of it.

When we got home, instead of packing, we went to the playground and for a ride on the Barbie Jeep. Katie showed out pretty bad at the playground, then we got home and she showed out with Mike. Mike finally got her to open up and she is a little scared about transplant, mainly that they will stick her and not know what to do with her central line. We know this is all because of last week, when Baptist didn't know what to do with her line and wanted to stick her for the IV. At least she talked about it. She really likes her "girl doctor" as she calls Dr. Godder and insists that she trusts her. And Katie is really psyched about being able to go back to radiation again. We're going to spend tomorrow decorating her room and getting settled in. We'll let you know her room number tomorrow night.

Take care everyone and keep those prayers flying.

Love, Michele

Sunday, March 19, 2000 at 09:23 PM (CST)

Hello! We had a nice weekend. Katie got to spend the night with Lakin and they had a great time. They were both good girls, but didn't get much sleep - not a surprise. Mike and I dealt with some bad news that just brought our blessings to light. First, there is another neuroblastoma diagnosis in our area - a cute five year old boy that we had the pleasure of meeting on Saturday. He is very much like Katie - up, happy and feeling good. Please keep TJ in your prayers.

Second, just this evening we found out that an Air Force demonstration pilot was killed in a crash in Texas. He was from Mike's squadron. Mike used to be on the demo team and he was also at the Ramstein air show disaster in Germany. Air show crashes are horrifying and our sympathies are with this pilot's family. We gave Katie a few extra hugs tonight, and each other.

Tomorrow is Katie's next appointment with the ENT. If the cultures are clear, then we will find out an admission date for transplant. Take care everyone.

Love, Michele

Friday, March 17, 2000 at 11:05 PM (CST)

Happy St. Patrick's Day everyone! Katie was so cute for her commercial. She wore her Carolina cheerleading outfit and had pom-poms (sorry, Melanie, she just couldn't carry the Clemson ones!) She was a little shy in front of the camera. I just think she wanted to do her best, but it was really cute. The commercials will start airing March 22nd on WOLO - TV 25 in Columbia. They will send us a schedule of the air times, but one of the air times is during the Academy Awards!

This evening we went to the rodeo and had a great time. Katie loved every minute of it. By the way, Katie is a Gemini. She has very diverse interests, as you may have figured out. Well, now she wants to be a barrel racer just like the cowgirls we saw tonight. We had front row seats and we even got showered with a little dirt from the bucking broncos! Way cool.

Have a great weekend everyone. We will send another update on Sunday night.

Love, Michele

Thursday, March 16, 2000 at 10:20 PM (CST)

Our experience at Baptist Medical Center was fine, with one exception. Everyone acted like they had never seen a central line before. They actually had ME hooking up her IV. Mike was livid and kept asking very loudly about how much they were charging us to use me as the nurse. Everything finally got resolved when a nurse from the IV team showed up, but at that point I had Katie hooked up anyway. Otherwise, though, everyone was very nice and Katie did great for her procedure. She woke up very grouchy and with a sore nose, but after a little nap she was just fine. She is amazing!

We have another appointment with the ENT on Monday for the results of the cultures, and he put her on an antibiotic just in case. If the cultures are fine, then we have to discuss an admission date with BMT. If not, they she will have to finish up the antibiotic and hope for the best. I have no clue and refuse to speculate anymore. Tomorrow is the commercial filming in the morning, then we are going to the rodeo in the evening. On Saturday she is spending the night with Lakin. I have no idea if Mike and I will go out. The idea of a quiet house is very appealing and I just might take a really long nap.

It's been awhile since I thanked everyone for their support, prayers and messages. We appreciate each and every one of them. Take care.

Love, Michele

Wednesday, March 15, 2000 at 07:25 PM (CST)

Hi, everyone. Katie and I had a play day. We went for a two hour walk this morning, down to the lake to feed the ducks, and to the playground. Then after lunch we went to Swan Lake so she could show me how she can go across the monkey bars like a big girl. It was a nice day. In between, we registered Katie for surgery tomorrow - the sinus cultures have to be taken when Katie is under anesthesia, so tomorrow at 8:30 a.m. we report to Baptist Hospital in Columbia for her "surgery" at 10:30 a.m.

We also got a call this afternoon from the media people at the Cancer Center who asked Katie to be in a commercial for the upcoming golf tournament that benefits the center. They are going to feature a bunch of cancer survivors - from little ones to big. Katie is one of the little ones! She is TOTALLY psyched. She has already told us that she is a star, and wanted to know if she would have her own dressing room. Mike and I just can't stop laughing. They film the commercial on Friday morning, so I'll let you all know how she does. She has one line - "for me" - and has been practicing it nonstop for about two hours. The woman who called me said, "Do you think she would like to be in a commercial?" I almost fell out of my chair. This is her dream! I love it.

Love, Michele

Tuesday, March 14, 2000 at 09:58 PM (CST)

Katie is doing all right. She spent her first hour with the psychologist by herself, then took a break, found me, and promptly threw up all over the waiting room. We think it was the antibiotic she is on, so I called the ENT and they changed her to something else. Katie wanted me to be in the room with her for the second half of her testing (just in case she threw up), and so I sat in there with her. In the meantime, the ENT's assistant called and left a message on our cell phone. I didn't get the message until late in the afternoon, when everyone had left their office. The ENT spoke to Katie's transplant doctor. The transplant doctor does not want Katie on the antibiotic until a culture has been done, so we are back to square one. Katie will probably have a culture done on Thursday.

I haven't managed to actually talk to any of these people, but I think we are all thinking the same thing - this is not an infection, it is chronic congestion, and she is going to have to have surgery before BMT. However, I repeat - I haven't actually talked to anyone.

After Katie's testing, we picked up Lakin and went out to lunch. A guy in Wendy's commented, "Boy, you have your hands full." They were wild. We went back to Monika's and let them run at full tilt. It is 10:00 p.m. and she is still wide awake. I wish she could just pass on some of that energy through hugs. Doesn't seem to work that way.

I did speak to the transplant coordinator and she told me that Katie is definitely allowed to get mail and gifts while she is an inpatient. She cannot have any food or plants, though. Since we have a bit of time, if you would like to send something to put up on her wall, go right ahead. We have already bought a Backstreet Boys poster, and Katie made some pretty purple snowflakes for the wall. Also, Vanessa gave us Christmas lights with moo cows on them, so we are going to hang those. Katie's room is going to be just like her - bright cheerful and wild. Take care everyone.

Love, Michele

Monday, March 13, 2000 at 08:07 PM (CST)

Katie will not be admitted tomorrow for her stem cell transplant. The ENT is treating her like she has a sinus infection, although the only symptom she has is clogged up sinuses. So, for the next week, she has to take an antibiotic. Next Monday Katie has another CT scan of her sinuses, and a follow-up with the ENT. If she is all clear, then she can be admitted on Tuesday for the transplant. If she is not clear, or only semi-clear, she may have to have surgery. Because she has been battling this congestion for so long we have a feeling that she will be having surgery next week, not a stem cell transplant. I tried to make it abundantly clear that this is nothing new, but it was a no go. I was basically told to take it up with the transplant team, but the ENT wants to do the antibiotics first then decided where to go after that.

Both Mike and I are very frustrated and scared at the same time that the cancer will start growing again. We have talked about it a lot in the last few hours and have decided to look at it from the positive side: we will finally get Katie's sinuses clear, and there will be no worries when she is admitted for transplant. Because if her sinuses are infected, or there is some sort of germ or bug in there causing all of this, the bottom line is that she could die if this problem wasn't taken care of right now. In other words, we had a big reality check.

Tomorrow Katie has her neuropsych exam, which should be very interesting. I have to go put the little one to bed and make sure Mike gets to work. Take care everyone.

Love, Michele

Sunday, March 12, 2000 at 10:26 PM (CST)

Hi, everyone. Katie is doing great. The seminar on Saturday was interesting and it was good to get out a bit. Katie and Mike bonded. They went out to breakfast and then to Swan Lake to walk and play. They were telling secrets all evening and wouldn't include me. It was very sweet. Today we ran errands and cleaned up the house in anticipation of Katie's admission on Tuesday. It was all very half-hearted, because we don't really think it will happen. But we'll see! Of course, Katie hasn't coughed and even sounded congested for a few days now. Our appointment isn't until 3:45 p.m. tomorrow, so it will be a whole day of waiting and wondering. If I send an update out tomorrow night that says ADMIT TOMORROW we will all be happy campers.

Have a good week.

Friday, March 10, 2000 at 09:18 PM (CST)

Well, our insurance problems with Monday and the ENT have been semi-resolved. We have to pay in advance, but Tricare and Medicaid are going to reimburse us. Katie feels awesome. We went to the zoo today after our DSS meeting and we all had a blast. Poor Mike was running on three hours of sleep, so we came home in time for the thunderstorms and to all take a nap. Well, all of us EXCEPT Katie. That child just never stops. Tomorrow I am going to a cancer seminar sponsored by the Leukemia and Lymphoma Society. I'm really looking forward to it. Katie and Mike are going to bond. Today when we were eating lunch, they wouldn't stop kicking each other. I finally kicked Mike myself, told them both that I couldn't wait until tomorrow to get some peace, and they both laughed at me! Yes, I have two five-year-olds in the house. Hope everyone has a wonderful weekend.

Love, Michele

Thursday, March 09, 2000 at 07:04 PM (CST)

Hi, everyone! Katie is doing great. We had a frustrating day, mostly because after 15 phone calls, we finally found out that the ENT we see on Monday doesn't accept our insurance. The closest approved ENT is in Orangeburg, and I'm pretty sure he won't see us in one day. Luckily Katie is covered by Medicaid because of her adoption subsidy. The doctor's office still doesn't know how to handle it, but I guess we will see on Monday. I get a daily e-mail of proverbs and this was today's entry: It usually rains where it's already wet. (German Proverb) Boy, I'll say.

We had lunch out with a friend (loads of fun), and then Katie had school. She had another spelling test and didn't get one wrong. Very exciting. Mike tested for his next rank today, so please send a quick prayer upward that he made it. Take care everyone.

Love, Michele

Wednesday, March 08, 2000 at 10:10 PM (CST)

Katie had her last localized radiation today and she did very well. I forgot her anti-nausea medicine. Apparently, she didn't need it today because she didn't get sick at all. Our appointment tomorrow to prepare for total body radiation has been canceled because it looks like Katie won't be admitted next week for her transplant. The appointment with the ENT has been moved up to Monday at 3:45 p.m. If the ENT approves, she can be admitted on Tuesday. We doubt that that will happen, though. We just don't know. On Tuesday morning, Katie has an appointment with a neuropsychologist to evaluate her cognitive abilities. The drugs and radiation she will get during transplant could definitely affect this and they need a baseline to evaluate her later. So, we very well could be in that appointment in the morning and admitted for her transplant in the afternoon...again, we doubt that would happen. Everything hinges on what the ENT has to say.

So, a few more days of waiting...we seem to be pretty good at that. Take care everyone.

Love, Michele

Tuesday, March 07, 2000 at 08:40 PM (CST)

Hi, everyone. We met with Katie's transplant doctor today and we got great news and bad news. The great news is that Katie's marrow is still clear and her echocardiogram shows that her heart is normal. Yeah! The bad news is that both of her sinuses are completely blocked and the transplant doctor wants an ENT specialist to take a look at her before she gets admitted. That's not so bad, but the first appointment we could get is March 17th. That means transplant is delayed at least for a week, maybe for longer if she has to have a procedure or treatment done on her sinuses. I won't get into why I'm so mad (she has been congested like this for going on FOREVER - ok so I got into why it makes me mad), but at least we might get some answers about her congestion. The transplant doctor is going to try to pull some strings to get her seen earlier, but right now we are on a wait and see (AGAIN!)

Tomorrow is Katie's last localized radiation. On Thursday she is going back to radiation to prepare for her total body radiation for transplant. She is excited because she loves it there so much. She is digging into her medical supplies right now, so I have to go put her to bed. They are her favorite toys these days. I bought her a bag of taffy today and she put it on her medical cart. When I asked her why she did that, she said the taffy was treats for good little boys and girls who do well when she gives them shots. Yeesh. Take care everyone.

Katie wants to type something: kjuhyl kiujhy jnhygtr bnmj lkjb fghj kjghjujj jhgg hnmlljkcjk jppgphpupupuh upguuhuuyuop pupuppu poiiiopio yyuo hgbjkiujkolytg

Love, Michele

Monday, March 06, 2000 at 09:46 PM (CST)

Hi, everyone. Katie is doing great. Today she told me that she doesn't want radiation to end because it is so much fun there. We had to yell at her to stay still and I think she moved around just to see if we were watching her on the TV screen. I guess tomorrow we will get the results of all the tests and then make final plans for admission for transplant. She got a HUGE card from a church group in Minnesota today from the Make a Child Smile website. It is almost as tall as she is! People - complete strangers - have been so generous from that organization.

Not much other news. There is a new picture on the website that I took today. Katie found a wig that I bought her a few years ago during Halloween and she was acting like her favorite Spice Girl, Scary. Hope everyone is doing well!

Love, Michele

Sunday, March 05, 2000 at 08:35 PM (CST)

Hi, everyone. We all had a nice weekend. Mike and I worked really hard to start getting the house cleaned up before Katie's admission. Katie felt great and had a lot of fun this weekend. Yesterday was our eleventh anniversary, so we went out for dinner and to watch John McEnroe and Bjorn Borg play tennis. It was great. Katie had loads of fun with Michelle and Brian. Katie fixed Brian's hair and there are pictures so I'll let you know when I post them to the website. I am sure the pictures will be priceless!

Katie hasn't felt the least bit tired and she hasn't gotten sick again from the radiation. I know I sound like a broken record, but she really is amazing. She goes back to radiation Monday, Tuesday and Wednesday and then she will be finished with the localized radiation. We also get the results of all of her tests on Tuesday after radiation. I know it will be great news. Until tomorrow!

Love, Michele

Friday, March 03, 2000 at 07:15 PM (CST)

Hi, everyone. Katie was wonderful today. I still can't get over how calmly she goes about all of these procedures. She had radiation at about 7:15 a.m., then we went to CAT scan, where we sat for an hour and fifteen minutes doing nothing. Katie was so aggravated that she went up to the receptionist and announced that she was bored and wanted to leave. We went in a few minutes later. She had a CAT scan of her sinuses and brain, and the poor thing had to lean her head backwards over a triangle shaped pillow. She didn't complain once. She sat up, stretched her neck, and said, "Ahh, that feels better."

Then Katie skipped on over for her bone marrow aspiration. They let me stay in the procedure room, and she wasn't under the anesthesia far enough and jerked when she was stuck with the needle. It was horrifying, but she doesn't remember a thing. They gave her a little bit more anesthesia and she was fine. Katie woke up beautifully this time, a little grumpy, but mostly very funny. She couldn't even make a clear sentence, but she was demanding to drive the wheelchair herself. Her nurse, Sabrina, ended up giving her the wheelchair for the rest of the day. We even took it to her echocardiogram. She had that at about 11:45 a.m., we had lunch, then we met with Katie's transplant doctor.

As of right now, it looks like Katie will be admitted on Tuesday, March 14th and begin the conditioning phase on Wednesday, March 15th. The conditioning phase is where they destroy her ability to make blood cells using total body radiation and then high dose chemotherapy. There will be three days of radiation, followed by four days of chemo, then a day off. When we get into this, I will probably do the update as Day -8 up to Day 0. Day 0 is the day she will get her stem cells. From then on it will be positive days. The consent we had to sign was truly scary, but if we want to head off a relapse of this monster, this is the only proven way to do it.

Well, this update is long enough. Katie is doing great. She is a little sore on her back, but otherwise she feels good. We got up at 5:00 a.m., so Mommy is heading for bed. Katie, of course, is watching a video, demanding a snack. Got to go!

Love, Michele

Thursday, March 02, 2000 at 09:45 PM (CST)

Katie was great for her radiation this morning again! The people there are so nice. Today she also had several blood tests and then I met with someone from clinical trials and with Katie's transplant doctor, Dr. Godder. Tomorrow Katie is going to have a long, long day - they were nice enough to put her in radiation first, so we have to be at Richland Memorial at 7:00 a.m., meaning we get up at 5:00 a.m. For these two non-morning girls, it is going to be tough. Mike has to work tonight, and can't go with us. Katie and I are both bummed. She's got the whole shebang tomorrow - radiation, CAT scan, bone marrow aspiration, echocardiogram and another meeting with Dr. Godder.

Tomorrow we are going to discuss her date for admission. There is no problem with March 13th anymore because they are going to start with the total body radiation, not end with it. We have to get all the tests results first, and then make our decisions. She was bouncing around the 5th floor today and her oncology nurse practitioner (Susan, the one Katie calls "mommy") wanted to know how we were going to keep her in her room in BMT. Once Katie starts treatment, she doesn't leave her room except for any tests they need to run. Any suggestions? I wanted to know if they had restraints.

Take care everyone.

Love, Michele

Wednesday, March 01, 2000 at 08:18 PM (CST)

Unbelievable - it is March. In October, when we received a copy of Katie's protocol and planned out the dates of her treatment, I hyperventilated imagining this month - how far away it was, how much Katie had to go through, how little chance the doctors gave her of making it to this point... but here she is, doing beautifully. Katie had some anti-nausea medicine before radiation, and she hasn't thrown up today. That will definitely be a habit from now on. The radiation took about 3 minutes, and she was very still. Tomorrow, we have several appointments with the transplant team, so radiation will start off the day at 8:30 a.m. On Friday, Katie has a huge day - CAT scan at 7:30 a.m., bone marrow aspiration at 9:00 a.m., echocardiogram after that, then radiation, then a meeting with her transplant doctor.

Katie hasn't felt the least bit tired since radiation began. She played today like a maniac, and wore me to a frazzle. We have gone bike riding, roller blading, to the park to play on the jungle jim, and for a Barbie Jeep ride. She just never stops. I'm hoping she is asleep now - but she probably isn't! It is "only" 9:00 p.m. I have to run and do some errands...take care!

Love, Michele

Tuesday, February 29, 2000 at 07:01 PM (CST)

Radiation was a breeze, until we were about two blocks from home. Katie then threw up in the car. But true to herself, she declared she felt much better. I gave her a little anti-nausea medicine, and she was good to go. Fifteen minutes after she threw up, she was at the playground with Lakin having a great time. Me? I'd be in bed for the night. Kids are amazing. There are two new pictures on Katie's website from today. One is right after radiation and you can see the marks on her tummy and the other one is from this evening when Lakin and Katie were riding Katie's Barbie Jeep.

Katie has radiation again tomorrow and possibly some other appointments for transplant, we just don't know exactly when. Take care.

Love, Michele

Monday, February 28, 2000 at 09:19 PM (CST)

We met Dr. Bill Neglia today - Katie's radiation oncologist. He was very nice and took his time explaining both the local radiation that Katie will have now and the total body radiation that she will have in conjunction with her stem cell transplant. She starts radiation tomorrow afternoon and will have radiation to her abdomen for 7 consecutive work days (Tuesday through Friday this week and Monday through Wednesday next week). He said that she can be ready for her stem cell transplant as early as Monday, March 13th! Katie's got blue paint all over her abdomen - she thinks it is really cool. Plus, they treated her like a grown-up and left Mike and I sitting in the exam room while they measured her and got everything ready for tomorrow in another room.

We called the transplant coordinator and they are trying to get every work-up appointment finished in this next two weeks so that Katie can be ready on March 13th. This is a very tentative date, for a lot of reasons. The basic explanation is that she can't start on a Monday, because her protocol calls for 3 days of radiation after 5 days of chemo, that would run into a weekend, and no one is sure if they can do total body radiation on a weekend. Also, to get all of her appointments finished in two weeks might be tough. She has so many - an echocardiogram, a pulmonary test, a trip to the dentist, and psychological evaluations for all of us are just a few of them. We'll see. We are going to transplant tomorrow after radiation to discuss everything.

It is so wonderful to get back into the swing of treatment. We finally feel like we are moving forward again. Keep those prayers coming that she will sail through radiation.

One more thing - tomorrow is the last day that you can see Katie as a Featured Kid on the Make a Child Smile webpage. You will still be able to access her photo and bio after March 1st, just on the Previous Kids page. Just FYI! Take care.

Love, Michele

Sunday, February 27, 2000 at 10:31 PM (CST)

Hi, everyone. We had a nice weekend. Katie is feeling great. She spent quite a bit of the weekend outside playing because it was absolutely gorgeous. The rains moved in this afternoon, but she had her Godmommy here to distract her, so that was fine. Katie officially now has more Barbies than Wal-Mart stocks. Tomorrow is our first consultation with the radiation oncologist, so we will hopefully have a better idea of the future tomorrow night. If we don't, I am going to be very unhappy. Have a good Monday.

Love, Michele

Friday, February 25, 2000 at 08:13 PM (CST)

Hi, everyone. We had a nice day. We took Katie to all-you-can-eat crab legs at the Officer's Club here on base, and she didn't eat much of them. She was more interested in the salad bar. We think that is a sign that her counts are on the rise. We had an eventful day. Radiation oncology called and said that they had no insurance authorization for our visit on Monday, so we were scrambling at 3:30 in the afternoon on a Friday to get that straightened out. Nothing like waiting until the last minute, we've only had this appointment for ten days. I have to give credit to Tricare in Columbia, though. Even though the person I reached is not our case manager, she took the time to get everything straightened out.

We're going to take a night off from the update. I'll send one out on Sunday night about the weekend. Have a great one, everybody!

Love, Michele

Thursday, February 24, 2000 at 08:35 PM (CST)

Hi, everyone. Katie had a great day. We went for a bike ride and to play at the playground, then Daddy took Katie golfing. In the midst of all this, she passed her spelling test with a perfect score, plus she got the bonus word. The bonus word was "Mom" so I am extra proud. Not much other news tonight. Katie continues to do beautifully!

Love, Michele

Wednesday, February 23, 2000 at 10:22 PM (CST)

I can't believe February is almost over! Katie is doing great. She spent the evening with Daddy because Mommy got to have a night out! Thanks for dinner, Melanie. Katie has discovered "conducting" and spent most of the day chasing us around trying to get us to sing on command while she waved her wand in the air. Anything at all to be in charge, bossing people around, and on stage! This afternoon, we met a nurse from our new home medical supply company, and Katie tried to impress on this woman that she is JUST FINE. At one point, she was climbing on top of one of our end tables to get on top of the couch. Never a dull moment.

Not much other news. Katie's strength, spirit and love of life continually amaze us. Hope you all have a great day.

Love, Michele

Tuesday, February 22, 2000 at 09:42 PM (CST)

I spent today firing one home medical supply company and hiring another one. Not too pleasant but hopefully our problems in that area are over. Katie had school with Miss Knepp and had a lot of fun. After Mommy was so slack during her surgery, Katie has made up some lost ground and she is starting to read with a lot of enthusiasm. Miss Knepp brought a book titled "Katie Can" today and we have read it about six times. At this point, I know she isn't reading because she has the whole book memorized, but it is still pretty cool to watch her get the words right. Katie is totally psyched about first grade, except she can't stand the thought of having another teacher. I told her I felt the same way - loved that Mrs. Oswald!

Katie has also been obsessing about Camp Kemo lately. She gets to go this year to the camp that is run by our cancer clinic. A whole week without us in July. I am already sick to my stomach! We have to tell her over and over what she gets to do, but her favorite part is about dunking her doctors.

Last but certainly not least, Katie feels great and looks even better. One more thing - if anyone does counted cross-stitch on this list and would like a fun project to help out a sick child, e-mail me! Have a great Wednesday, everyone.

Love, Michele

Monday, February 21, 2000 at 06:04 PM (CST)

Hi, everyone. We had a good weekend - Katie got to spend the night with her Lakin again on Saturday. They had a great time. We would have had a good time, too, but Mike had to work Saturday night. Oh, well. Katie has been feasting on shrimp again. She played outside with Daddy a lot today because it was so beautiful here. She ran down her Barbie Jeep's battery. Mike is having a tough time with third shift. He had to work seven days in a row and only had Sunday night off.

We found out that our appointment with radiation oncology is next week because the doctor himself is on vacation. And we can't fit in any of the transplant appointments this week because radiation might change the results of some of the tests, so they all have to be done after radiation.

Three days with no update, and I am struggling to find things to tell you! Katie feels great and looks wonderful. Not sure if I told you all this but her hair is slowly coming back in, as are her eyelashes and eyebrows. It is pretty sparse, but still cute. She asked us the other day if she could keep her hats when she is off treatment. I think she really loves those hats! Take care everyone.

Love, Michele

Friday, February 18, 2000 at 09:29 PM (CST)

Hi, everyone. Katie had a wonderful day, no problems, lots of energy. We waited all day to hear from someone in transplant, and when we did it was a message to wait and see after her radiation appointment on the 28th. Unbelievably, we may have no doctor's appointments for next week. I still can't get over it. I should feel good, but it is a little aggravating to wait when all I want to do is attack this cancer and make it go away for good. Katie and I had a long talk about radiation and her transplant tonight, and she told me she isn't scared. She was scared for surgery, but that went pretty well (her words!) She also talked about seeing one of the doctors she met in intensive care. We ran into Dr. Webb in the hallway of the hospital a few days ago, and she was so thrilled to see Katie doing well. Katie had no clue who she was. We talk about her time in PICU, but she has no memory of it. I am so glad.

We're going to take the weekend off for the update, and I'll send one out on Monday night. Have a great weekend everyone.

Love, Michele

Thursday, February 17, 2000 at 08:39 PM (CST)

We got some wonderful news today! Katie's bone scan came back totally normal - no hot spots at all! We are very excited. The CAT scan, however, mentions that the spots on her spine from December are still there, so it looks like she will have localized radiation to the tumor bed and just two vertebrae. Our nurse practitioner says that her long term side effects from radiation to two vertebrae should be barely noticeable (if it was to the entire spine, she could end up with scoliosis and a whole host of other problems). Anyway, Katie's "team" - oncologists, transplant doctors, radiation oncologists - meets on Tuesday to discuss the final plan and then we have our appointment with the radiation oncologist on the 28th. February 28th seems so far away and I raised that in my phone calls to the clinic, but they have no answer for me other than that is the first opening. The folks in transplant have many other appointments for us to attend, so I'm sure we will spend next week running here and there.

Katie in the meantime feels great and is back to eating pretty well, too. Her energy constantly amazes me. A big thank you to everyone - there are now more than 2,000 hits to Katie's website. She not only checks her guestbook every day, but she also checks that number. Today she said, "2,000? That's almost a million!"

Love, Michele

Wednesday, February 16, 2000 at 10:03 PM (CST)

Hello! Katie was awesome today for her scans. Unfortunately, they were so late that we don't have results yet. Her blood counts were wonderful, though! Usually, at ten days after the start of chemo, her counts are so low we have to take the precautions of avoiding crowds but this time she is ok for a few more days. Dr. Kevin told us that we should be hearing from the radiation oncologist as soon as he can review the scans and plan her radiation treatment, hopefully by the end of the week. I can't think of another thing to tell you - it was a long day and I am ready for bed! Katie wanted to go to bed early, something you never hear out of her mouth! She is snoring as I type this. And honey girl, when you are sixteen and reading this, YES YOU DO SNORE.

By the way, I added three new pictures tonight. I can't work our scanner very well so they aren't cropped perfectly (or even close to perfectly!) but they will do!

Love, Michele

Tuesday, February 15, 2000 at 08:07 PM (CST)

Hi, everyone. Not much news today! Katie had a teacher visit today and did very well on her reading test. We are so proud of her that she is able to keep up with her schoolwork while she is getting treatment. I can't even keep up with paying the bills and keeping the checkbook balanced. As I say many times, Katie is amazing. Tomorrow is the big day for scans and blood counts. We are all really curious about how close she is to remission, but we know in our hearts it will be good news. Her energy and happiness are clear indications that the cancer is NOT getting the best of her. I doubt we will have any results tomorrow, but we will share if they come in!

Love, Michele

Monday, February 14, 2000 at 09:19 PM (CST)

Happy Valentine's Day everyone! Mike slept most of the day because he worked all night, but he did get up to eat dinner with us! Katie made some yummy cinnamon rolls from scratch and I helped a bit :) We also washed Mike's truck - pretty sweet of us, don't you think! We even spent half the day opening packages and cards. I don't know where I'm going to go with all of this stuff, but Katie sure does love it.

She is feeling great by the way. She is scheduled for bone scan, CAT scan and blood counts on Wednesday. It will be another eight hour day at the hospital, but this will be her 5th CAT scan, so she is a pro. Hope everyone had a SWEET day!

Love, Michele

Sunday, February 13, 2000 at 07:37 PM (CST)

Hi, everyone! Chemo ended yesterday without fanfare, thank goodness. Katie did great, then we went to the movies to see "Snow Day." She loved it and wanted to see it again right away. It was kind of cute. We are now trying to get back into our regular routine, if you can call it that. Mike ran into work to pick up his pay statment and lo and behold, he has been placed on third shift and goes in tonight at 11:00 p.m. It would have been nice to know that in advance, huh? We always look for positives, and now we will all be able to have dinner together, so that will be good.

Katie's eating habits are getting weird again. She is obsessing about seafood and when she found out the commissary was out of crab legs, she insisted on shrimp. She hate a whole half pound herself, and then wanted more. I guess we can figure that her white blood count is going down when she begins to obsess about crab legs! She is already begging for more shrimp for dinner tomorrow. Her appetite for sweets is up, too.

Katie has already had a wonderful Valentine's Day, thanks to many of you and many strangers, as well. The Make a Child Smile website has generated tons of cards and gifts for Katie, including many valentines. On Friday, when we got home, Katie's class had left her a whole bag full of valentines, plus some goodies from their party. Miss Knepp told us that all the kids assumed Katie would be there because she was there for Fun Friday the week before. Boy, don't we all wish. Instead, Katie was getting chemo. A lot of you have also sent electronic cards, which Katie loves. Finally, we received a huge box of valentines and goodies from St. Stephen's Church in Reading, PA. I just wanted to thank them via this list and our website. The valentines are all adorable (they came from all ages in the Sunday School classes), and the goodies were great. Beanie, please print this thank-you for them and let them all know how much we loved the box!

Have a great week, I know we will!

Love, Michele

Saturday, February 12, 2000 at 07:29 AM (CST)

Good morning, again! I fell asleep last night and never managed to send an update. Anyway, Katie is doing very well. After she got some fluids yesterday, she felt like herself again. Chemo went well, there was still blood in her urine, but it was a trace amount, so the oncologist told us not to worry about it at all, because he wasn't worried. We are heading to the hospital today for the last chemo of the week, the last chemo of round 5, and the last of her regular chemo! Yeah! We are then going to go to the movies to see "Snow Day" as one last trip out before her counts fall.

On Wednesday, Katie is scheduled for another CAT scan and bone scan, as well as blood counts. We didn't meet with the radiation oncologist yet because he wants to see the scans first - makes sense - instead of talking hypotheticals, we will talk about the exact treatment she will get. Dr. Kevin stopped to talk with us at length yesterday, and wanted to reassure us that she is going great. That is the exact word he used. Mike and I were relieved, since every other doctor has told us that she is just having a "standard response." He was predicting that she will get out of her transplant in two weeks, rather than a whole month, because she is doing so well. I really hope that is the case!

We've got to run and get this over with! Thank you for all your support and prayers!

Love, Michele

Friday, February 11, 2000 at 06:20 AM (CST)

Good morning. Our computer is finally up and I have about ten minutes to write an update about the week. It has been a long week, for a lot of reasons. Tuesday the pharmacy decided to put Katie's chemo into 600 ml of saline, instead of about 20 ml for some reason. It is a very expensive drug, so they balked at remixing it. I should have insisted though, because we spent an additional three hours at the clinic that we didn't need. On Thursday, they found trace amounts of blood in Katie's urine, so she was given an additional drug to protect her bladder when she got Cytoxan. That chemo drug can be pretty harsh on her bladder. That meant an additional two hours at the clinic. We haven't been home earlier than 7:30 p.m. any night this week, and we usually go in at 8:30 a.m.

This morning at 3:30 a.m., Katie started to throw up. She is sleeping now, I am going to wake her up right before we leave. It will be a long trip to the hospital. BUT, with all this bad news, she has had a lot of fun at the clinic this week because the Hornsbys were there. Christian Hornsby is the little guy being treated at the clinic - he is 7. He has sisters that are 9 and 10 (Kayla and Corrie) and Katie loves them all. So we got to play games and hang out with some people we really like. Elaine Hornsby, their mom, is the one who got me in trouble with Santa during the Christmas party when we were talking too much - something I am sure that no one can believe about me (talking too much!) The kids spent most of their time hunting JulieMarie with their waterguns and putting nasty notes on her door. JulieMarie is the one who started this all - she is a research nurse with the Cancer Clinic and she deserves a special mention here in the update, because SHE'S A NUT!

I have to go wake the munchkin. Thanks for being patient. It is horrible for us to be without a computer also, believe me!

Take care.

Love, Michele

Monday, February 07, 2000 at 09:55 PM (CST)

I am sure glad that this is the last round of chemo, the last time we will have to hook Katie up to IV fluids during the night...well, maybe I shouldn't say the last time....at least it is the last time that we know of! We got up at the crack of dawn and got home at about 6:00 p.m. Katie did very well all day, only had a little nausea tonight after a problem getting her anti-nausea meds hooked up to her IV, and is now sleeping soundly hooked up to fluids. She was hunting nurses again with her little watergun, and soon enough the nurses were battling each other with syringes filled with water. It was pretty funny. Then we had to do laps around the clinic with Katie walking backwards and me lugging the IV pole that had two bags and a huge bottle attached to it. Hey, we are professionals now.

Tomorrow she'll be hooked up to fluids until the afternoon, but there is no chemo. We go back on Wednesday at 10:00 a.m. The cards are pouring in from the Make a Child Smile website - 10 today alone! She just loves it. We also received a beautiful bear from the Exeter Township Lions Club - my dad's former club in Pennsylvania. Thank you! Katie's website has more than 1750 hits - thank you all so much for spreading the word. The more prayers, good thoughts, and support we get, the better we all feel.

Love, Michele

Sunday, February 06, 2000 at 08:56 PM (CST)

Katie had a great weekend! She feels great and looks even better. She was telling me tonight while she was in the tub that she thinks her scar is much bigger than Madeline's. Well, Madeline had her appendix removed, so I told her that she was probably right. That really made her smile. Right now, the scar is pretty gruesome. I am sure it will get better with time. When I was drying her off tonight, I saw all the scars from her bone marrow tests, the surgery, and her neck catheter and it really hit home. This kid has been through so much, but you just can't tell. She is so amazing.

Tomorrow we have to be at the clinic at 8:00 a.m. to start round 5 of chemo. Katie went to two birthday parties this weekend, plus we went to the Columbia Marionette Theater to see the Wizard of Oz, so she got in a lot of her socializing. We'll let you know how day 1 of round 5 progressed tomorrow evening. Until then!

Love, Michele

Friday, February 04, 2000 at 08:32 PM (CST)

Hi, everyone! Guess where Katie is right now? Spending the night with her friend Lakin. I can't believe I am letting go again. It was almost a whole day without my little pumpkin. She spent the first half in school, then I drove her to be with Lakin. Katie had a GREAT day at school. She had so much fun. When we got there, her little class was sitting in line, waiting to go into the room. Katie parked it at the end of the line and within a second, all her little girlfriends were gathered around her, talking quietly and giggling like they see each other every day, not once every three months. When I picked her up, Miss Knepp handed me a gift from her whole class - a picture tree that has each of their pictures. Also, when her class went out to recess, they were the only ones on the playground. It means so much to us that everyone she is surrounded by cares as much about her and her health as we do.

Today we got our first box full of mail from the Make a Child Smile website address. There were two cards and two gifts - one a huge teddy bear. We will be opening our own stuffed animal museum when this is over. Saturday and Sunday are busy days with a birthday party on each day (Will and Woogie) and a visit with one of our new friends from the Navy (can't wait to see you, Liz!) We are cramming lots of things in this weekend because the next phase of treatment starts Monday. We go from chemo to radiation to stem cell transplant pretty quickly. Her blood counts might not be this good for a long time.

Take care everyone and I hope you all have a nice weekend. I'll do a weekend update on Sunday night, so no update tomorrow!

Love, Michele

Thursday, February 03, 2000 at 06:28 PM (CST)

Hello! We had a good day today. Katie and I got to go out on a really long walk because the weather finally got a little warmer. I am still frozen, though, and Katie is huddled under a blanket now. This morning, Katie had some blood work done and she was cleared for chemo to begin on Monday. We start at 8:15 a.m., and we will probably be at the cancer clinic all day. She gets cisplatin that day - a very harsh drug, and it takes six hours to be infused into her central line. Before the chemo, she has to get her anti-nausea drugs by IV as well. This is the last round of chemo, however, so we are all psyched.

We had a family trip today, too - to a blood drive. On the first Thursday of the month, the American Red Cross comes to the base. Mike and I decided to donate and take Katie to watch. She was horrified by the whole thing - she just couldn't watch, but she was pretty proud of her Mommy and Daddy for going through all that. And she thought all the snacks and drinks were pretty cool. Plus, she's just downright charming when she wants to be, so she was the star of the show again. When Katie was first diagnosed we asked about direct blood donations, and her oncologists didn't want us to do it. But now, after three blood transfusions, only ONE of which actually matched her real blood type, we want to encourage everyone to donate blood and/or platelets. Katie is B+, and we are both O+. During surgery, she received O+. While our blood won't go to Katie, it will go to some other little girl who is fighting cancer, or anyone else who might need it. If you haven't donated in awhile, or have never donated, please think about making an appointment soon. Katie will probably need both blood and platelets to make it through her stem cell transplant, and she made need them after this round of chemo and radiation. I'll get off my soapbox now!

Tomorrow is school for Katie - I'll let you all know how it goes.

Take care.

Love, Michele

Wednesday, February 02, 2000 at 09:28 PM (CST)

Hi, everyone. I spent a lot of today boo-hooing over everything. Let's see - first I was trying to tell Mike about one of Katie's classmates, Lakia. This wonderful little girl made a hundred day project for school and used hearts for everyone's names. On the left hand corner was Miss Knepp with a big heart, on the right hand corner was Ms. Harrison, and in the very middle was a big heart for Katie. Then I cried over the little ones on our neuroblastoma internet list we receive who aren't doing well, but who are still the bravest strongest people we know. Then I read over the guestbook on Katie's website (1656 hits and counting!) and boo-hooed again.

Oh, yeah! And Katie?! She's doing great! We went to visit Monika today, and Katie was carrying Erika around like she was a baby. We all freaked out because she had major abdominal surgery just two weeks ago (today!) But Katie doesn't care. She flashed her scar at everyone tonight. She still has stirry (sorry about the spelling) strips on most of the incision, but she still loves to show it off. Everyone ganged up on me and I was trying to tickle all the kids, and Katie is right in the mix.

Tomorrow Katie has another doctor's appointment to do last minute labs before chemo on Monday, then Friday she gets to go to school! Yeah. Take care everyone!

Love, Michele

Tuesday, February 01, 2000 at 06:42 PM (CST)

Here's the surprise! Please follow this link:

http://www.makeachildsmile.org

When you get to this website, click on "Featured Kids of the Month" in the top menu bar. Hopefully, you will see little miss Katie! She is a featured kid this month on Make a Child Smile. Alexandra, the woman who created this website, asks that anyone who views the website send a card to each of the featured children. She features three children each month. We had to get a post office box because they don't want any identifying information to be given out about any of the kids. If you want to forward this to your friends and family, all you have to do is send the link to the website, or copy the banner above [right click with your mouse on the banner, choose COPY, then open another e-mail and choose PASTE.] We are very excited about this and Katie can't wait to get even more mail from complete strangers!

On the medical front, the surgeon cleared Katie for more treatment and clipped her small stitches that were peeking out. She was a mess but it was over before she could actually start to cry. Her blood counts are extremely good and she is going to attempt going to school on Friday, as long as there are no cases of chicken pox. Her next round of chemo will start on Monday, the 7th of February. That means all day in the clinic on Monday, Wednesday, Thursday, Friday and Saturday. But, this is the last round of chemo on her protocol, so we are thrilled!

Miss Katie had steak for dinner (she ate an entire strip steak by herself!) with chocolate cake for dessert. She knows how to eat! Gee, I wonder where she learned that from :)

Take care everyone.

Love, Michele

Monday, January 31, 2000 at 08:17 PM (CST)

First of all, Happy Birthday Woogie! Today is Katie's twin's birthday. Katie had five foster brothers when she was in foster care and one of them was so close in age to her, and they looked so much alike, that we always called them the twins. His real name is Terry Dove, but we all call him Woogie.

Katie had a good day today. We visited some friends to get out of the house and it felt pretty good. She is eating better every day, thank goodness. I was a little worried there for awhile. She did insist that we bake a chocolate cake this evening (with chocolate icing). Katie has never eaten chocolate cake in her life, so I figured that Mike and I would be eating it. Well, she just polished off a big piece. Her appetite for sweets has really changed - it used to be non-existent, now it seems to be all she wants. She was also begging for steak tonight. Weird! And it's not even chemo week!

Tomorrow we have appointments with Katie's surgeon and her oncologist. We'll let you all know how they go! Also, tomorrow I have a big surprise for everyone - we can't wait! Take care.

Love, Michele

Sunday, January 30, 2000 at 08:11 PM (CST)

Hi, everyone. Not much news today - we didn't even make Katie get out of her jammies. We all chilled out and watched a lot of TV. It was very restful! I was wavering all day between feeling so sorry for us to feeling very good about our situation. Katie's loss of half of her kidney was not what we wanted, but her system is working just fine. We saw quite a few friends in the hospital this time, and everyone else had horror stories. While I was being consoled about Katie's pneumonia and kidney, another friend told me that her granddaughter's cancer was going to be operated on, and certain bones in her pelvis were going to be removed. Then another friend was heading to stem cell transplant in a last ditch effort to save his life, because his cancer had spread to his lungs. Someone, somewhere has it much worse than we do. I guess I just want to tell you all to enjoy today. I quit living in the future awhile ago. Too bad it took this to teach us this lesson.

Our sunshine girl sends her best! I am putting new pictures from the hospital on the website tonight - please visit and check them out. We love you all!

Love, Michele

Saturday, January 29, 2000 at 07:33 PM (CST)

We are home, all recuperating from that hospital stay, and we are fine. Yesterday, we all got up late, I managed to clean the kitchen and cook dinner and that was about it. Katie was a veg on the couch most of the day. We did go to the grocery store, and she couldn't make it through - she had to hang on the cart for the last four aisles, and I ran through those. I didn't send an update last night because Katie had trouble staying asleep. I guess her schedule is to come wide awake every two hours, like in the hospital. I laid down with her at about 10:45 p.m. and that is where I stayed all night!

Today it was a yicky day in South Carolina, but no snow. Katie is pretty mad about that. She missed the first one by being in the hospital and here mother nature won't cooperate when she is home. She isn't eating very well, but she attempts something at each meal. I can't remember if I told you all about one of the side effects of her being sedated - Katie's voice goes up two octaves. Well, we thought it would wear off by now, but it hasn't. Her voice is so high right now it could crack glass. Even a normal request sounds whiny! Katie doesn't seem to be in any pain - she was attempting back flips today before I stopped her. She is dancing around again, just like her usual. It amazes me that just a few short days ago she was double-dosing the morphine with a splash of Tylenol with Codeine.

Our follow-up appointment with the surgeon is Tuesday, and then we also have to go to the cancer clinic to get blood counts and plan the next round of chemo. In the meantime we are all sleeping more than usual and stepping over the piles of toys, mail and laundry that seem to scattered all over the house. Mom, you would be horrified if you saw the house today after you did such a great job on it before you left for Florida! Sorry :)

OH! By the way, I keep forgetting - my dad DID win his election and he is on the Board of Directors for his homeowner's association for two more years. Go Dad!

Take care everyone.

Love, Michele

Thursday, January 27, 2000 at 08:19 PM (CST)

Hi, everyone. We just walked in the door about half an hour ago - it's a little after 9:00 p.m. I'm going to do a quick update and hit the sack. Katie is already in her own bed, all snuggled up with a blanket heated in the dryer because it's so cold! We waited all day for the surgeon and he finally appeared at 6:45 p.m. and said we could go home. Katie's chest x-ray is almost all clean, with just a little bit of pneumonia in the left lung, something he is confident that we will work on at home.

Today, Katie spent almost the entire day on her feet, in the playroom, or wandering the halls hunting the nurses with her water gun. It was like night and day - she always dramatically improves when she feels better. We saw her snot doctor and she was very impressed with Katie's improvement. Even the difficult breathing treatments were cake this afternoon. The only medicine she is on is a twice-a-day inhaler for her lungs - no more antibiotics! Yahoo.

Well, this was the next hurdle after four rounds of chemo, and even though it was a super high hurdle, Katie managed to get over it. She looks beautiful and only lost two pounds, and she has a scar worthy of her hero Madeline. Next will be radiation. We have a follow-up appointment with the surgeon on Tuesday, then she will probably start chemo the next Monday. The good thing is that her counts are up and she can basically do anything she wants, except for play really rough (and that might be tough to harness, but we will try.) Thanks again for everyone who brought dinner, offered encouragement via phone and e-mail, and prayed with us. We love you all.

Love, Michele

Wednesday, January 26, 2000 at 09:44 PM (CST)

My aunt just told me not to call it "Grumpy Day" but it was! It was a happy day for her because she got to see the little lovebug. She was anything but a lovebug today especially after her bronchoscopy. Well, let me start at the beginning. She had a great night and was sleeping soundly when we woke her at 7:00 a.m. for the snot removal (the doctor's term for it, not ours!) She was so angry - wouldn't even confirm her name with the nurse in surgery! The procedure went well, lots of snot was removed, so it was successful. The doctor had to go in 10-15 times to remove as much as possible. Katie was breathing so much better afterwards. Her breathing treatments are now really working. The best news of all: WE GET TO COME HOME AS SOON AS HER CHEST X-RAY IS CLEAR! That could mean tomorrow (but we kind of doubt it since she still sounds a little diminished on one side)! Yeah!

The rest of the day Katie refused to speak to anyone, including us. My parents and my aunt Sandy came in at about 4:00 p.m., and she told me aunt to be quiet after a short two sentence conversation. But as the evening wore on, she became more and more with it, and started to actually smile and talk. Not much, mind you, but a little bit. She took four walks in four hours and is much steadier on her feet. She even played a few computer games.

We will now have about 10 days off until she starts the last round of regular chemo. We will meet with the radiation oncologist then to plan her radiation treatments. When she starts radiation, her kidney will be healed (where they repaired the artery) and she will be ready. I am home tonight, trusting Mike again since he did so well the other night. I am sighing a huge sign of relief and sending many thanks to the man upstairs, and also to all of you who have supported us through this mess. Take care!

Love, Michele

Tuesday, January 25, 2000 at 09:00 PM (CST)

It was an awful day with a decent ending. Today, we were told that Katie's pneumonia is not resolving as well as expected. Tomorrow she will probably have a bronchoscopy. They are going to sedate her and then put a tube into her lungs to suck out the nasty stuff. Hopefully this will resolve the pneumonia.

On another note, the renal scan that she had yesterday brought us bad news. Half of her right kidney is completely dead. It is not working at all. The weird thing is is that it is NOT the side where they had all the problems. That side is working perfectly well. So, there was talk today about taking her right kidney, taking part of it, or leaving it alone. Luckily, we have doctors that don't mess with stuff they don't deal with and they called in a urologist. Mike met with him (I left the hospital for the first time in two days, just before the urologist showed up.) He told Mike that they were going to leave her kidney alone, and that we can expect that it will end up doing about 30% of the work (right now, because it was damaged, it is only doing 13% of the work). We can expect that if she does have any problems, it will be high blood pressure, which is treatable. If we can't control the high blood pressure, then her right kidney will be removed. All of this could happen many, many years in the future, if at all. The urologist gave her a 10% chance of getting high blood pressure.

Dr. Kevin McRedmond, our primary oncologist, also came to visit and he was very reassuring about Katie losing half the function in that kidney. He said that neuroblastoma often affects the kidneys and that this is not unusual, will not affect how the neuroblastoma will be treated and while we didn't want this to happen, we can deal with it. It made us feel good.

Another medical event - her CAT scan this morning (and yes, I had another run-in with the people in CAT scan who just can't get it in their head that they were dealing with a five-year-old child) showed some residual tumor. But, Dr. Kevin described it as a 95% reduction. Pretty good. He thinks radiation will completely knock it out.

So, while we live through day 7 in the hospital, Katie gets stronger and we jump through the hoops that are set in front of us. Mike and I are both staying tonight so we can be with her for her bronchoscopy tomorrow. We are going to meet with the radiation oncologist soon to talk about the next phase of treatment. My dad and my aunt are coming tomorrow to pick up my mom and take her home to Florida.

I'm not really sure we can take visitors just yet. I don't know how Katie will handle the procedure tomorrow, so we will just have to let you all know. Thank you for being so patient! She is up and walking more and more, but today she barely spoke to anyone - including us. Take care everyone.

Love, Michele

Monday, January 24, 2000 at 08:26 PM (CST)

Hi, everyone. I am typing this update from the hospital! We got a computer in our room on the 5th floor and when I can make it behave, I can connect to the internet! Yeah. Katie had a long day again, but is improving. Mike was superman last night. When Mom and I walked in this morning, Katie was up laughing and talking like she was queen of the world. I almost passed out. They had a great night together. I am so proud of Mike - you are a great dad (I told him I would put something nice in the update - so there).

Katie got a breathing treatment this morning while Jeannette, her music therapist, played her guitar and we all played instruments. I think it was the best breathing treatment so far because she was laughing so hard. After that, she had a renal scan to check if there was any damage to her kidney after that artery was injured. We are all nervous about the report, but know that God is on our side and she is going to be fine. She slept through the whole scan and when we got back to the 5th Floor, she was in pain again. Lots of morphine got her back to feeling good and she managed to walk and play in the playroom.

Now the big news - the snow! It started to snow this afternoon and hasn't stopped yet. A very weird thing for South Carolina, huh! I sent Mike and Mom home immediately because I knew traffic would be insane. It took them two hours to get home, but they are safe, thank goodness. Eric's wife Linda brought Katie a huge cupful of snow to play with, and she had a great time with it. Katie took a long nap late in the afternoon so we are up at 9:30 p.m. watching videos (the cable is out!) It doesn't look like Mike and Mom will be able to come tomorrow because this nastiness is expected to freeze and be even more miserable tomorrow. We sure will miss them, but we just want everyone to be safe.

By the way, Katie is on regular food now and asking for her usual weird things. She did eat jelly toast for me tonight and a bowl of cereal. She is a trooper! A CAT scan is scheduled for tomorrow to see if there is anything left in her abdomen. They are going to scan her chest as well because of the pneumonia.

Take care everyone! Thank you for all the thoughts and prayers.

Love, Michele

Sunday, January 23, 2000 at 09:00 PM (CST)

Hello, everyone. This is officially Michele! I am home with my mom, and Katie is with Daddy tonight. It is really hard for me to let go, but it is good for EVERYONE for them to be together. Thank goodness for my wonderful sweet tolerant husband who puts up with my nonsense. I love you, hon.

Anyway, Katie had a rough day. Her epidural wore off today so the incision really began hurting at about 11:30 a.m. Add into this that her pneumonia is really breaking up, causing her to cough often, and it was a rotten day for her. Her health is improving, but she feels worse! Anyway, she had both morphine and Tylenol with codeine and she feels much better (well, she actually slept for six hours this afternoon - I don't know about better...) Like I said, her pneumonia is getting much better. Dr. Woods, one of our oncologists, called her improvement "dramatic." She is still getting up to go to the bathroom and she turns herself in the bed all by her own self (as she calls it). Also, at 6:00 a.m., her nurse Kathy and I took Katie to Radiology for a chest x-ray and she stood all by herself for the x-ray. I am so proud of how hard she is fighting.

Katie is also now on an all clear liquid diet. She has been drinking water, juice and soda since she woke up this evening, something she is really enjoying.

I have had to tell a few people to stay away, just because she is in so much pain. Please bear with us. Tomorrow may be a better day. Katie is really sleeping most of the day anyway, and she isn't very pleasant when she is awake, and who can blame her. Thank you for all the messages and support, we really appreciate them. We are very comfortable over in the Cancer Center 5th Floor (we all agreed it feels like home), and we feel more rested and capable there! Take care everyone.

Love, Michele

P.S. When Katie is feeling better, I will take a picture with the digital camera (thanks, Jim!) and put it on the website.

Saturday, January 22, 2000 at 09:22 PM (CST)

Katie graduated to her regular room today because she fought back so hard last night and really improved her pneumonia. Her pain medicine has been cut back as well and she is more aware and with it. We were in her regular room for about an hour when Katie got up and walked to the potty - a huge accomplishment after 4 days in bed. she has done that three times now!

Katie is still getting breathing treatments every 4 hours and she is still fighting the pneumonia, so we want to restrict visitors for one more day. We have no idea how long she will be in the hospital at this point. Katie has another CAT scan, MIBG scan, bone scan and other various tests plus she has to get over her pneumonia. She is being very cutie and demanding and showing us her real personality.

Pleas join us in a huge sigh of relief. She is our little miracle & a real gift from God. Here is her hospital information:

Palmetto Richland Memorial Hospital
Richland Medical Park
Room # 7526, Katrina Krize
Columbia, SC 29203

Love, The Krize's

Friday, January 21, 2000 at 10:15:44 PM (CST)

Katie definitely has pneumonia and she is now getting breathing treatments every two hours. Her fever has not been managed well on Tylenol so the surgeon finally ordered Ibuprofen. Even with all this, she had a pretty good day. When her fever dipped below 101 degrees, she perked up and wanted to watch TV. We also read books for 2 hours straight!

The nurses from the Cancer Clinic arranged a bed for us over in the 5th floor, so I can get some rest tonight. Katie's lungs are getting clearer very slowly. She will be in PICU until this resolves. We didn't expect this, but she's fighting hard and we feel ok. We will get through this.

Love, Michele

Friday, January 21, 2000 at 06:37 AM (CST)

Please see the update from yesterday - this is the second journal entry in the past 12 hours!Hi, everyone. I am sure you are as anxious as we are, and I just heard from my mom this morning after the night with Katie, so I thought I would share before we head off to the hospital. Katie had a good night! She had two breathing treatments and then they had to get a sample of the stuff deep in her lungs. My mom said she fought pretty hard and coughed as hard as she could and gave them exactly what they needed. It was the only time she was begging for me. But, if I was there, she would have been begging for Mike and if we were both there, she would have wanted Nanny. Mom says Katie is sound asleep now, resting very comfortably. Her fevers have come down - at one point in the night her temp was 98.6 - woohoo! It is 100.5 right now. Mom even claims that she slept a little.

Thanks for all the messages. We have read them very quickly, but appreciate each and every one of them.

Love, Michele

Thursday, January 20, 2000 at 09:30 PM (CST)

Katie has developed a fever and is still in pediatric intensive care (the right place for her to be). Also, she has developed some wheezing in her lungs and they are monitoring her closely for pneumonia. I am so exhausted this might not make sense. Katie left me alone for all of two hours last night. Even so, there are only chairs to sleep in (in the family waiting room, not at bedside), so I am crazed. I cried hysterically with my mom and Mike tonight, just from sheer exhaustion and frustration. Her kidney seems to be functioning fine. Our nurse today, as she was leaving, hugged me for a long time and assured me that she is doing just fine. Pneumonia is a complication that can be expected when someone has been intubated and sedated for 8+ hours. Still, it hurts so much to see her hurting. She did smile twice for us and was kind of teasing Dr. Adkins. Also, Katie is grumpy! Good sign. She is following directions beautifully, and cooperates with everything the nurses ask of her. I am so, so proud of this little fighter.

Nanny is with her tonight. Katie agreed to this, so we all know that she isn't too uncomfortable. Back in October when she was first diagnosed she wouldn't let me out of her sight. For right now, no visitors, please. She can't have anyone back with her except for Mike, my mom and me. We will let you know when she gets a regular room. Please keep her in your thoughts and prayers.

Love, Michele

Thursday, January 20, 2000 at 06:44 AM (CST)

Katie, as usual was amazing! She was in surgery for about 8 hours. There was a complication, but Dr. Adkins feels confident that he removed practically all of the affected areas - the main tumor, 4 lymph nodes, & her adrenal gland. The complication was a nicked renal artery that was repaired by a transplant surgeon called in by Dr. Adkins. He told us that Katie got one quarter of a kidney transplant because of the artery repair. he expects no problems from this, though. She got one unit of blood.

We have spent some time with her - she looks beautiful !! if she does well through the night, she will be going to the Cancer Center 5th Floor tomorrow.

We thank you all for your love, support & prayers. Until tomorrow

Love, The Krize's

Tuesday, January 18, 2000 at 07:48 PM (CST)

It was another long day, but I can honestly say that Katie was a really good girl. We met with the surgeon for a long time - probably an hour to an hour and a half and Katie didn't make a peep until we asked her to. She colored and played quietly while we asked a million questions. Then she had blood counts done and an echocardiogram (during which she fell asleep!) We got home last this afternoon.

Surgery tomorrow is set for 9:00 a.m., we have to arrive at 7:00 a.m. Katie will be losing her adrenal gland definitely and hopefully all of the tumor. There is a VERY slight possibility that she will lose one kidney, also. But the surgeon does not feel that this will actually happen. If Dr. Adkins can't remove all the tumor, then Katie will probably have to have localized radiation. She will be hooked up to everything - NG tube, Foley catheter, other IV's lines plus her central line - you name it. The surgery could take from three to eight hours. We will let you all know when you can come visit. Katie should be in pediatric intensive care overnight, then maybe up to four days depending on how she does. We ran into Dr. Woods - he is one of our oncologists, but also the head of pediatrics at the hospital, and he wants her as an inpatient at pediatric oncology, so I am sure we will be there (5th Floor of the Cancer Center). When is the only question.

Mary Nell, the child life specialist in pediatric oncology, told us today that all the inpatient rooms got computers with internet access. What we are hoping to do is at least keep the website up to date and send e-mails when possible. Mike will send a message out tomorrow night. I will stay at the hospital!

I know I don't have to ask, but just keep those prayers and good thoughts coming as always.

Love, Michele

Monday, January 17, 2000 at 07:40 PM (CST)

It's been a long day - it always is when they start out at 5:00 a.m. The CAT scan itself went well, but the two and a half hours beforehand did not. Last week, I had the surgeon's office call and request the blue contrast since Katie did so well with it last time. When we got there, a real nasty person from CT told me that they don't ever have the blue contrast and she wasn't going to get it. I very nicely (yeah, right) told him that less than a month ago she had the blue contrast. Then he suggests apple juice, lemonade, and a bunch of other things! Well, if it could have been in apple juice in the first place, why didn't they tell me that! Then, every other CAT scan she finishes her drink, then we go back for the scan. This time, it took an hour and a half. I was livid. Anyway, the scan itself went well. Katie was very still and as always, a real trooper. We will get the results tomorrow with the surgeon.

Katie had so much fun playing with Nanny today. We danced tonight to almost every song on the first Spice Girls CD. She is such a happy little thing! And she danced in her new nightgown from Aunt Sandy, lace socks and black high heels. It was quite a sight. Take care everyone.

Love, Michele

Sunday, January 16, 2000 at 06:36 PM (CST)

Hi, everyone! We had a wonderful weekend. We surprised Katie with a trip to Myrtle Beach to sleep in a hotel - she was totally psyched. She loves sleeping in hotels, and they are dirt cheap this time of year at the beach! We went to the movies (GalaxyQuest is really cute!) and ate a nice dinner. We all just loved being together and being away from here.

Nanny and Pop-Pop arrived today and they are entertaining the little one, thank goodness. I think they are one their fourth game and they have been here an hour. We have to be in Columbia tomorrow morning at 7:00 a.m. for a CAT scan, so it will be early to bed tonight. Pop-Pop is going back to Florida so he can be there for the big board election (he is running for the homeowner's association again - go Pop-Pop!) Then Tuesday we meet with the surgeon and Wednesday is the big day. We will let you all know when she can have visitors at the hospital.

Not much other news - Katie feels great and looks beautiful. Have a great week!

Love, Michele

Friday, January 14, 2000 at 08:17 PM (CST)

We had a nice day with a visit from Monika and Lakin (whose hair looks even worse in the daylight!) Not much other news. Katie feels great and looks great. She did pack her bags today and told me that she was moving out, after I yelled at her for trying to watch TV and do homework at the same time. But then I promised to bake brownies and she said she would stay forever. Never a dull moment around Katie Krize!

We are going to try to have some fun this weekend to get our minds off surgery, so I won't be sending an update tomorrow. Nanny and Pop-Pop Dahl arrive on Sunday. Have a great weekend everyone!

Love, Michele

Thursday, January 13, 2000 at 10:08 PM (CST)

We had an interesting day! Katie had school today - loads of fun as usual with Miss Knepp. Didn't get to tell you this, Karen, but Katie was pretty upset in the car the other day when I informed her she would have a different teacher for first grade. She cried about missing you! Miss Knepp brought a wonderful gift - a check - from the Oakland Primary PTA. They shared their profits from their holiday gift sale with our family to help us through this awful time. It came at the perfect moment. Looking at the procedures for the next few months we may be driving to Columbia each and every day, plus finding places to eat while we are there. Thank you, PTA!

Katie was desperate to see Lakin tonight, so we went to visit. Two things happened today that set up my next story: I got my hair cut (Katie watched) and Noah got his hair cut (Lakin watched). Lakin wanted her hair cut, so the girls decided it was time. Katie managed to cut a few chunks out of Lakin's hair before Sandra noticed. It is pretty bad. Lakin is going to get the short hair cut she has been begging for! Diana and I were yelling at the girls when they started giggling, and I started, then Diana. It was pretty funny, but I felt horrible. That's the Katie story of the day!

Take care everyone.

Love, Michele

Wednesday, January 12, 2000 at 09:47 PM (CST)

Hi, everyone. We had no doctors appointments, no blood counts, no hospital visits - no nothing today! Yeah! We all slept in, then ran some errands and Katie is finally in bed. Mike had to go back to work today, so it is quiet right now. Katie feels great. She is still favoring her neck at the catheter insertion site, but who wouldn't.

I found a great explanation of a stem cell transplant in the volumes of material that BMT gave me, and I thought I would share. This is from a booklet called "Stem Cell Transplant - A Companion Gide for Breast Cancer Patients", and even though it is written for a different kind of cancer, the transplant is exactly the same. I put my comments in brackets.

"A stem cell transplant is the same as a bone marrow transplant except that stem cells are collected from the circulating blood instead of the bone marrow. [The machine is large and the push and pull was too much for Katie's existing central line, thus the new temporary one in her neck.] Instead of inserting a needle directly in the bone marrow to obtain cells, drugs called cytokines or growth factors [Katie had a daily injection of a growth factor, Neupogen] are given to "mobilize" stem cells; that is, to move them out of the bone marrow and into the bloodstream. They can then be collected using an intravenous catheter similiar to those used for collecting blood. These cells are sometimes called peripheral blood stem cells.

The source of the stem cells and how they are collected are the main difference between peripheral blood stem cell transplant and bone marrow transplant. Peripheral blood stem cells are given to the patient as a transfusion, and, like bone marrow cells, are able to make red blood cells, white blood cells, and platelets. Stem cells are collected from the patient and then frozen until the time of transplant. [Katie gave enough of her cells for 5 transplants!] Just before transplant the patient is given high doses of chemotherapy and/or radiation. [She will have both.] This kills cancer cells in the patient's system. It also damages the patient's bone marrow's ability to make new blood cells. The frozen stem cells are then thawed and given back to the patient. This is done by a painless transfusion and may be referred to as a "rescue." The goal of the rescue is to restore normal blood production. This wouldn't happen if normal stem cells were not given after high-dose treatment. Post-transplant recovery may take several weeks."

I hope you have all enjoyed STEM CELL TRANSPLANT 101. Have a great day.

Love, Michele

Tuesday, January 11, 2000 at 06:04 PM (CST)

The reason for the title, "Please Sit Down" - Katie is going to wow you again. We just got the call from the nurse at BMT - they
collected 8.7 MILLION today!!! We just can't stop giggling. The packed the cells into 4 different bags, so in theory she has enough cells for 5 transplants now. I just can't believe it! The line was removed today, also. It was horrendous. Katie screamed and cried, but we think it was because of the unknown, and not because it hurt (at least that is what I keep telling myself.) She couldn't see what we were doing, and the nurse was coming at her with scissors. Plus, she just didn't want to move her neck. Anyway, she was awesome even with the crying. That thing was awful and I hope she never has to have another one. Her good old central line in her chest will do just fine.

Surgery is now scheduled for next Wednesday, the 19th. Katie will have another CAT scan on Monday, we meet with the surgeon on Tuesday, and then surgery and admission on Wednesday. She will be at Richland Memorial in the Cancer Center, 5th floor (pediatric oncology inpatient) after she gets out of pediatric intensive care. When that will be is anyone's guess. She will probably be inpatient for a week, maybe a little less, maybe a little more. We'll keep you posted about the miracle child. I still can't believe she harvested 14.7 million cells overall. My mom thinks we should sell the cells! Hee hee! Katie is a stem cell machine.

On a more somber note, keep our friend Eric in your prayers (his cancer has relapsed and he is looking at a stem cell transplant that will probably not work) and our friend Jeananne who has also been diagnosed with cancer (of the lung). Jeananne started treatment today! You go Jeananne!

Take care everyone.

Love, Michele

Monday, January 10, 2000 at 09:37 PM (CST)

Remember Lee Majors - the Six Million Dollar Man? Well, we have the little six million cell girl. Let me start at the beginning - this morning, while it was storming big time, outpatient surgery calls and asks us to come in right away because Dr. Adkins' early surgery was canceled and he wants us there right away. So, we fly out of Sumter, at 30 mph because it's a mess, and get there with bells on. The line placement went very well - Katie skipped into surgery, waving and laughing at us. Getting awake was tough - and the line is completely awful. It is in the nape of her neck and looks as gruesome as the BMT doctor said it would. The first thing Katie did was try to yank it out when she was still halfway asleep.

Because her white blood count was only 1.9 on Friday, we didn't think she would be harvested today. Well, today it was 13.4. They wanted her at 10 to start, so guess what - we started. We got back to BMT, ate a little lunch, and Katie was hooked up to this massive machine (kind of like a dialysis machine) and they started the harvest. She fell asleep for most of it, and then we were told to go home, wait to find out how many stem cells they actually collected (they really wanted to collect five million TOTAL - over the course of three days max). The nurse called at 6:00 p.m. and said that they had collected SIX MILLION. I still can't get over it. She really is a miracle. Because they are all in the same bag, they want to collect again tomorrow, just to have a little extra. And, that nasty new line gets taken out tomorrow (thank goodness).

On even more positive news, Dr. Adkins (who will be doing her major surgery), has bumped up the surgery to next week. He has no desire to wait any longer than necessary, so we will probably end this week with another CAT scan, and hopefully be in surgery early next week. He sounds very positive about the tumor resection, and wants us to talk at length in the next few days. She will be in the Pediatric Intensive Care Unit at first - depending on complications, etc. Then she will be an inpatient in pediatric oncology - 5th Floor of the Cancer Center, for anywhere from 4 to 14 days (again, depending on complications).

When we got home tonight, I had to give Katie her shot. Mike got tears in his eyes looking at this incredibly brave little girl who now has two central lines inside her, getting a shot to boost her immune system, who had just given up the six million cells that are going to save her life. I got teary-eyed praising her before she fell asleep for how brave and strong she is. What an amazing experience this has been. God showed us his power today and it was awesome. I AM SO PROUD TO BE THIS CHILD'S MOTHER.

Love, Michele

Sunday, January 09, 2000 at 10:48 PM (CST)

Hello, all. We had a nice weekend together. Both Mike and I got to spend some time alone with Katie, and we also got to spend some time alone together. Katie feels great and looks beautiful. She's been doing a lot of cheerleading this weekend, and her favorite cheer is "T - U - P - Y - You ain't got no alibi - you're ugly, yeah, yeah, you're ugly." Katie swears she learned it on TV. She watches way too much apparently!

Tomorrow morning she will have another catheter placed in her jugular to handle the stem cell harvest. We played surgery tonight and the toughest part is where I can't go in with her when she goes to sleep. We practiced a lot and she seemed pretty comfortable. It is outpatient surgery, so we'll be home tomorrow night. If her counts are high enough, they will also start her harvest tomorrow afternoon. I almost hope they don't, because we have been told over and over that if she eats a good breakfast before she starts the harvest she will do much better. Well, she can't have anything at all to eat or drink after 3:00 a.m. So, we are hoping for Tuesday so there won't be so much going on tomorrow. We'll see! Katie always surprises us...

Love, Michele

Friday, January 07, 2000 at 08:48 PM (CST)

Well, it was another amazing day of ups and downs. Katie is doing great - her blood counts fell a little - not what we were expecting but they are still pretty good. After many phone calls and lots of running around, Tricare approved the placement of her second central line on Monday, so we are set for surgery at 11:30 a.m., and have to arrive at 9:30 a.m. They will harvest her stem cells IF: 1. there is insurance approval to do so; AND 2. her counts are good enough. She has to have a white blood count of 10 - right now it is only 1.9. With the injection she is on it just might shoot that high over the weekend, but I doubt it. I personally think she will be harvested on Tuesday or Wednesday. There will be another CAT scan on January 18th, we have an appointment to meet her surgeon (Dr. Adkins) on the 20th, and then surgery is tentatively scheduled for January 26th.

Today I called the academic dean at the law school and officially withdrew for the spring semester. Because I withdrew for two semesters, I have to re-apply for admission, but Dean Lacy asked me if I wanted to take summer courses and I said maybe and he is going to send the registration materials when they are available. I guess I'm re-admitted! Anyway, he was wonderful and he even said that he thought it was for the best. I'm feeling a little weepy about it, but I am sure it is the right decision. We practically spent three full days at the hospital this week - I wouldn't have been able to go to class or study. I am so drained from this week fighting about insurance coverage and meeting a whole new team of doctors and nurses that I can't imagine picking up a book (for my law school friends: ESPECIALLY TAX!)

Mike and I get to go out tomorrow night on a date - Michelle and Bryan have decided to take Katie on for an evening. Should be interesting! I think I'll skip the update tomorrow and we'll send a note on Sunday.

One more thing! I put Katie's school picture on her website. I scanned it and tried to shrink it, but it is still huge. She is gorgeous, though - you'll see! Take care everyone.

Love, Michele

Thursday, January 06, 2000 at 10:17 PM (CST)

We had a wild day today, again! Before I get into it, just know that Katie feels great and looks even better. We had non-stop appointments all afternoon. Katie was very bored because I did most of the talking so she wandered around the nurses station and made a general pest of herself. Still, at five years old for six hours of appointments, she was great.

The best news we got all day is that her bone marrow is clean! The lab at Richland Memorial was apparently very wrong - the doctors at Children's Hospital of Los Angeles examined her marrow and couldn't find even one neuroblastoma cell at the molecular level. Everyone has assured us to trust these results, and not the local hospital results. It was awesome news. Katie is also having a different surgeon now than originally planned, but this surgeon practically specializes in tumors and is just as highly thought of as the first surgeon. Her tumor resection is now planned for January 25th.

We are having one huge problem - if you can call it that. Our insurance company has yet to approve her bone marrow transplant. I got quite aggitated today discussing this with BMT, but after reading between the lines it boils down to this: Tricare (our insurance company) hasn't even been asked to approve it yet! Katie has done so well, and so fast, that she snuck up on BMT and they simply weren't prepared. This workup that we have had for the past two days should have been done a month ago. No one expected her to be this close to remission this fast. Add into this doctors who don't think about paperwork and the holidays and we have a little mess on our hands. But, it is just a little mess - everyone expects it to be cleared up tomorrow and she will be able to proceed with the stem cell harvest.

The harvest will probably take place next week. She is going to get another temporary catheter implanted in her jugular (the doctor described it as gruesome looking but safer and more effective). When she is done with pheresis, it will be taken out. Katie thinks it is hysterical that she is going to get a line in her tickle spot. The pheresis itself could take one to three visits, each visit lasting three hours at the most. They take enough stem cells to do two or three transplants, in case she needs them.

I really can't think of anything else. It was a long day, a busy one, but exciting. When things are moving and she is getting care, we all feel energized. It's the waiting at home that gets tedious! We go back tomorrow just for blood counts and to work in the insurance issue, so we should be home early. Take care everyone!

Love, Michele

Wednesday, January 05, 2000 at 07:51 PM (CST)

Hi, everyone. Katie had her first appointment at BMT today and it was a wild one. BMT in Richland Memorial is on the same floor as the pediatric oncology inpatient unit. Shannon (Katie's favorite nurse) was on, and so were a lot of our other favorite people, including Beth, Bonnie, and Ms. Jackson! We also made some new friends at BMT. I am sure they all went home shaking their heads going, "Oh, my goodness." Katie was in great spirits, had a huge audience to entertain, and basically had a blast. The big controversy now is what to do about Katie's central line, which apparently is not big enough to use for the stem cell harvest. On Monday, she may get a new bigger line, then again, she may not. Tomorrow we have hourly appointments starting at 12:00 with everyone from a dietician to a pharmacist to a BMT doctor.

Katie was absolutely amazing today for her shot. She didn't cry even one tear - before, during or after. We couldn't believe how calm she was! I am so proud of her! Take care everyone.

Love, Michele

Tuesday, January 04, 2000 at 09:02 PM (CST)

Hi, everyone. Katie had a great day. She spent some time alone with Daddy running some errands so I could finally finish cleaning. All I really wanted to do in the quiet house was curl up on the couch but I was a good girl! Katie didn't have such a great day with food - we have been hunting for white American cheese forever, and finally Food Lion got some in today. So at 2:00 in the afternoon we drove there, bought some, came home and Katie took one bite and then insisted on eating powdered donuts. We were still arguing when her teacher came for school. She got over it, thank goodness.

We had an exciting phone call, too - the people in Bone Marrow Transplant ("BMT") called to start scheduling her tests and procedures to get ready for her stem cell harvest. We go in tomorrow at 2:30 p.m. for blood counts at the clinic, then go up to BMT for more blood tests. On Thursday Katie will have to go in again to finish up with BMT. I met a woman whose child is at the City of Hope in San Francisco who just went through a harvest and she called it the "stem cell shuffle." We will have to get a projected number of cells to have enough for transplant, somewhere between 5 and 10 million I think. Anyway, wish us luck and keep the prayers flying!

Hope everyone is doing well. Take care.

Love, Michele

Monday, January 03, 2000 at 09:10 PM (CST)

We had a beautiful day here in South Carolina. I don't know how warm it was, but it had to be close to 80 degrees. Katie loved it and spent the entire afternoon outside with Daddy riding her Barbie Jeep and playing baseball. She feels great again. I know we live with her every day and see her in constant motion but she always amazes me. Katie is such a little inspiration! Her shot went pretty well today. She was completely hysterical before we gave it to her, and during the shot she was quiet as a mouse. A minute later she was dancing around the house. Oh, I rhymed. It's time for bed.

Mike returns to work tomorrow and the house is still a mess! I should just quit complaining. We are having way too much fun to have a clean house. Take care everyone.

Love, Michele

Sunday, January 02, 2000 at 08:15 AM (CST)

Hi, everyone. Sorry about no update last night. Katie and I were snuggled up watching Jurassic Park (she loved the dinosaurs) and I didn't feel like leaving her. She did very well yesterday with the last day of Round 4. We even got to watch Eric hooked up to the stem cell harvest machine. Katie looked at it for about 30 seconds, said, "Cool" and walked away. It actually does look cool. You can look inside it to see the cells separating, although I couldn't really tell what was happening.

Katie starts her Neupogen injection today. She's not real happy about that. She asked for a big hug before I put the numbing cream on her leg today. It's going to be a nightmare, but she's strong. Mike can't even look when she gets her shot. Katie screams a lot about the anticipation - the actual shot is pretty calm. Her dose is more than doubled from last time because she has gained 10 pounds! We are so proud of her with her eating. She really tries hard to make sure she eats three meals a day and snacks. During chemo week it is a struggle, but even if she eats a few bites, we praise up and down.

Well, the house is a mess and I have to get busy. Plus, because her counts are still up we are going to try to go to Toy Story 2! We heard it was great...take care!

Love, Michele

Friday, December 31, 1999 at 07:16 PM (CST)

Katie started off the last day of 1999 by throwing up all over herself, me and the truck on the way to the hospital this morning. It had just crossed my mind that she hadn't thrown up yet, when whammo. It's ok - we went to Wal-Mart, bought new outfits and some air freshener and we were good to go. Then when we got to the hospital, the pharmacy hadn't sent her anti-nausea medicine yet and the poor thing started to vomit again. As soon as she was done, she skipped around the floor hooked up to her fluids and claimed that she felt much better.

Micah and Nicole came to visit and brought a son for the gorilla at home. By the way, Micah and Nicole, she carried the thing to the truck on her shoulders and it is definitely bigger than she is! Katie had an awesome time getting chemo in the hospital today (the clinic was closed for the day) because OF COURSE Shannon was there (Katie's favorite nurse). Katie was very entertaining again. We were also hanging out with Destiny and Victoria, Eric's daughter and niece respectively. Destiny thinks Katie is very amusing and just followed her around to laugh. Destiny is 2 1/2. Eric is 25, has bone cancer, and he is going through stem cell harvest right now - a great source of information for us! Destiny and Katie both got Barbie Jeeps for Christmas, too. We have met so many wonderful people on this strange trip we are on.

I hope everyone has a Happy New Year. We are going to bed early and hoping for the best in 2000. Take care!

Love, Michele

Thursday, December 30, 1999 at 06:53 PM (CST)

We had a roller coaster day. Katie was really mad about getting up early this morning and I couldn't blame her because I was a mess this morning too. We made it to the clinic, she got hooked up to her fluids (the chemo she got today requires 2 hours of fluids before it is given to her), then we made our way to Nuclear Medicine to finally finish up her scans for the week. We were supposed to be done in about half an hour. Well, they didn't even take us until 9:40 p.m., and then the machine broke in the middle of her scan. It was ok, though, because she fell sound asleep on the table. Unfortunately, she was also getting fluids at a huge rate and she woke up in the middle of the scan once the machine was fixed. So, we had to start all over again. Two and a half hours later, we finally made our way back to the clinic. She started chemo shortly thereafter and we left at about 2:30 p.m. We were supposed to be out of there before noon. Oh, well.

Today Katie told me that the Cancer Clinic is a lot of fun and she sure is glad we get to go there all the time. She just doesn't get it - THANK GOODNESS. I'm so glad that she is happy and that she feels so good about herself and her life. Our plans for the next two days include chemo in the hospital as an outpatient and a good nights rest on New Years Eve. Stay safe, everyone.

Love, Michele

Wednesday, December 29, 1999 at 09:04 PM (CST)

Hi, everyone. Katie had a scan this morning, then two chemo drugs and yes, her urine turned orange! Quite a thrill. She made it through with no problems. It was insane in the clinic today. They had to go hunt more IV pumps because so many children were there getting transfusions and chemo. For some reason, they used a lot of fluid to give her the Adria, and we didn't get out of there until 5:30 p.m. We had promised a Toys R Us trip, so that is where we went afterwards. We only got home at about 9:30 p.m. Yeesh! Tomorrow Katie returns for another scan and more chemo.

We got the results of her bone marrow test and they are very good. She still has disease in her bone marrow, but the reduction has been dramatic. Dr. Ron described it as going from 100% to 2%. We were hoping for the all clear bone marrow, because she is going to be harvested in the next few weeks. I'm going to try to explain: because they are going to remove her stem cells to freeze for her bone marrow transplant, doing so while she still has active cancer cells is not good. There is one place in the U.S. that purges stem cells, but the jury is out over whether or not that is a good thing (sometimes purging damages good stem cells). The bone marrow transplant team will be making the decision on whether or not to purge the bad cells from her harvested marrow. Also, she is going through this round of chemo which will destroy even more cancer. Katie will most likely have another bone marrow test in the next two weeks.

Her energy was incredible today and she was certainly entertaining. Of course, with all the people at the clinic today, she had a huge audience. If she doesn't turn out to be an actress, I'll be shocked. Take care everyone.

Love, Michele

Tuesday, December 28, 1999 at 02:37 PM (CST)

Where do I start? Yesterday morning, Katie was injected for her miBG scan at 8:30 a.m. She had a physical exam at 9:00 a.m. (she's perfect, of course!) and her blood counts came back pretty high, clearly over the mark to allow her to start round 4 of chemo. At 10:00 a.m. she gave herself anesthesia (I am not kidding), until she passed out. I absolutely love our doctors, nurse practitioners and nurses that all allow her some control over her own destiny. Dr. Ron wasn't able to pull much marrow, but no one seems concerned. He took samples out of both her hips and forwarded one of them to Children's Hospital of Los Angeles so that it could be examined at the molecular level.

Katie was finally admitted at noon, and they started hydrating her, for about 4 1/2 hours. She was totally psyched about staying in the hospital, mostly because her favorite nurse in the world, Shannon, was assigned to her. At 4:30 p.m., she got some anti-nausea medicine that put her out cold and then she started chemo that ended at about midnight. Oh, and by the way, in between she ate four bags of barbecue chips and had a Sprite. That's all she wanted. At 9:00 p.m. she woke up hungry, had two bowls of Frosted Flakes, some jelly on a roll, and yet another bag of barbecue chips. We watched movies until midnight when she got another dose of anti-nausea medicine and went to sleep. Finally. The concern all night was that she was urinating too much (letting out more than she was taking in). But all of her blood tests came back normal, so we are just supposed to watch her closely. She had the miBG scan this morning, and they discharged us a few hours later.

Katie has the roller blades strapped on in the house, is eating a lollipop, and seems to have gotten over the grumpies (all the anti-nausea drugs give her attitude). We got back tomorrow morning for another miBG scan and then for chemo in the clinic. The chemo she gets tomorrow turns her urine orange - one of her favorite things. My cold seems to be a little better, but we are all beat. I have to go crack the whip and make sure she stays hydrated. Take care everyone!

Love, Michele

Sunday, December 26, 1999 at 07:27 PM (CST)

We had a quiet day after Christmas. Katie is doing great - she feels wonderful and doesn't seem to be worried about tomorrow. In fact, she is very excited about spending the night in the hospital. She can't wait. She packed her bag this morning. Now me - I have a nasty cold, passed to me from Mike who wrestled with it all last week. I wanted to rest today, but knew that if I took a nap, I wouldn't sleep tonight.

We are going to skip the update tomorrow as I will be spending the night in the hospital with Katie. Hopefully tomorrow we will get the results from her bone scan last week, and the results of her bone marrow test will be in later this week sometime. I am SURE it will be more good news! The chemo schedule this week is: Monday chemo inpatient; Tuesday come home no chemo; Wednesday, Thursday and Friday chemo at the clinic; and Saturday chemo in the hospital [it's just a short one-hour infusion - we should be home by noon.] She has miBG scans scheduled for Wednesday, Thursday and Friday, too. Busy week. Take care everyone!

Love, Michele

P.S. I would love to hear all about your Christmas holidays, also! Sometimes I feel like we live in a bubble and no news from the outside leaks in! Thanks.

Saturday, December 25, 1999 at 10:15 PM (CST)

We hope you all had a very merry Christmas. Santa did stop here and brought everything he could think of. We haven't been able to move anywhere in the house without stepping on something. Katie got her Barbie Jeep, as well as a few other special requests, and was extremely happy. I got emotional tonight thinking back to four years ago. Today is the anniversary of the first day we met Katie. I remember her beautiful dark eyes, her shining smile, the way she carried around cheese in her hand... For those that don't know, we met Katie on Christmas Day 1995 in the Wendy's parking lot in Columbia on Garner's Ferry Road. Christy, her guardian ad litem, had picked her up and we all went to Christy's mom's house for dinner. As soon as I laid eyes on Katie, I knew that she was ours. We bonded instantly. Her hug that day was the best Christmas present I ever got, just like the hugs I got today.

Nanny and Pop-Pop are heading back to Florida tomorrow. They are tired of the cold in Pennsylvania and South Carolina (brrr - it didn't make it out of the 30's today!) Monday is a bone marrow test and chemo round 4. Take care everyone!

Love, Michele

Friday, December 24, 1999 at 08:35 PM (CST)

Hello, everyone. We are filled with the Christmas spirit! We attended church at St. Michael's in Columbia to see four of our little friends in their Christmas service. It was entirely too long (9 readings, twice as many songs) and the babies were awful by the end but we still had a great time. Then we had a party at Monika's. It was an absolute madhouse - there were about 16 adults and 11 children under 8 and it was an absolute blast. I told Katie that I had a great time and she said, "I had a WILD time." Yes, she did. She is now bugging me about Santa being sick. She just wants to make sure he isn't and wants to know what happens if he can't make it. I'm going to put her to bed now and hope she falls asleep! Have a wonderful Christmas, everyone!

Love, Michele

Thursday, December 23, 1999 at 09:46 PM (CST)

We got another Christmas present today - Nanny and Pop-Pop! They are here to spend Christmas with us, after a first early Christmas with nephews Jonnie and Jeffrey in Pennsylvania. They made it here safely in record time and Katie was thrilled to see them. Finally someone to play cards with her! We got to get out a little bit today, and Katie spent all the money she was saving during the time her counts were down. She bought a Barbie Polariod camera. She has taken a picture of me, my parents, and also of the television. Don't ask.

Katie was singing in the car today - the wrong words to a Christmas song, "We wish you a merry Christmas...to you and your kids [not kin], " and I was just grinning. She asked me what was so funny and all I could say was, "Today is good." We love you all. Have a great night before Christmas Eve.

Love, Michele

Wednesday, December 22, 1999 at 04:20 PM (CST)

Let me quote Katie's doctor, "I have GREAT news." Katie's tumor has shrunk 50%! Mike and I got to look at her CAT scans and it is amazing. Where before, the tumor crowded her whole abdomen - you could barely make out her kidney, it is now half as big and there is room beside her kidney and spine. She is doing very well. Dr. Ron said she is exactly where they want her to be and the tumor is obviously responding to the chemo. Everything is on track! Also, Katie's hearing test came back completely normal, so she hasn't had that side effect from the cisplatin. We haven't gotten the results from the bone scan, but Dr. Ron predicted that they would be just as good. He also is expecting wonderful results from her bone marrow test on Monday.

Katie was absolutely amazing during all of the procedures. She drank the blue contrast like it was her favorite drink in the world (thanks again Jim and Tammy - much better than the orange), and she didn't throw up during the CAT scan, probably because she had a little mood enhancing drugs in her, too! She kicked us out of the room during bone scan because she's a big girl and she can do things all by herself now. We heard her in there joking and laughing with everyone from Nuclear Medicine. She also had a blast during her hearing test. The last time I remember being tense was when we left the house this morning. After we pulled away from the house, everyone took a deep breath and we started to laugh, and never stopped. This wasn't the nightmare like the last round of tests.

Katie is pretty whiny right now because she is tired and I'm not paying attention to her, so I must go. Our prayers, and all of yours, have been answered. She is such a gift from God! Have a great evening everyone.

Love, Michele

Tuesday, December 21, 1999 at 08:07 PM (CST)

We're going to call it an early night to get ready for tomorrow. We have to be in Columbia at 7:30 a.m., so we have to get up between 5:00 and 5:30. Unfortunately, none of us are early birds. Katie had a wonderful time with Lakin last night and didn't want to leave today. It was another nasty rainy day in South Carolina, so we stayed in, ate Burger King for dinner, and played cards. I can't think of another thing to tell you all...I am sure there will be more news tomorrow! Good night, everyone.

Love, Michele

Monday, December 20, 1999 at 11:30 p.m. EST

I know, what a title. Well, tonight, for the first time since September and Katie's diagnosis, I let her stay overnight at Lakin's house. I have lost my mind. It is going on 1:00 a.m., I'm still up, and I'm sure she is fine. Poor Diana, Lakin's mom - I gave her a typewritten list with all kinds of things on it, and then I had to go over it with her. Anyway, Mike was working, so I got to shop - to my heart's content for hours on end. I finished all my Christmas shopping and had a great time.

Katie's scans on Wednesday are weighing heavily on our minds. Please keep her in mind during that day - both for good results and for good procedures. The last CT scan Katie had was a nightmare. We are a little more prepared this time, thanks to our friends the Wests who made two suggestions to make life easier - the blue contrast and a mild sedative for Katie. It's going to be a long day. We start with a CT scan at 7:30 a.m., then bone scan injection at 9:00 a.m., physical at 9:30 a.m., actual bone scans at 12:00 p.m. and then a hearing test at 1:00 p.m.

I'm not really sure when we get the results. I know that our doctors hate to make us wait, and will get us some information as soon as possible, and of course, we'll share. After all, when I felt tempted to skip the update today, I almost couldn't bear it! I have heard from all of you how much you appreciate the updates, but for me, it is almost therapy. I read through them every once in awhile, especially the early ones. They are making a great journal.

Keep up the Christmas spirit!

Love, Michele

Sunday, December 19, 1999 at 09:57 PM (CST)

It was rainy and cold in South Carolina today, so we did a lot of laundry and watched a lot of TV. Katie spent the day in her Pink Power Rangers costume, karate chopping us all day. Why? "Because I feel like it." I didn't press her! Hey, why not. She looks adorable in it. She also insisted on wearing her hot pink satin slippers with the outfit. I don't have much else, just hope everyone had a great weekend.

Love, Michele

Saturday, December 18, 1999 at 11:19 PM (CST)

Another quiet day - we visited friends for awhile, then cleaned the house and baked some yummy chocolate chip cookies. I lit some wonderful holiday candles, so the house really feels like Christmas. I was thinking back to last year, when Allen and I took our whole families to stay with our parents in Florida for Christmas. We swam almost every day, we took the kids to this wonderful playground, we went out for ice cream, we had a visit from Santa....all I can remember is now normal everything was back then.

Happier things - we found this great list of "you know you are a parent of a child with cancer when..." and I just had to share my favorites:

Kids with hair look kind of strange to you.

Your spouse asks what that sexy perfume is, and it's Betadine.

You enjoy the drive at 3:00am to the emergency room because there aren't any other cars on the freeway.

You hear a truck backing up and you think the IV is beeping.

Your child's bedroom looks like a Toys R Us store.

You ask your CPA if bribe toys are tax deductible.

You can read the doctors prescription word for word, and are asked to decipher it by the pharmacist.

You wrap presents and packages with medical tape.

Your child can easily pronounce "Neuroblastoma," "chemotherapy" and "coagulate," but has trouble pronouncing the state you live in.

And finally, for the rest of you:

You know you are the friend of a family with a child with cancer when you call to check the chemo schedule and ask "How will her
counts be on, say, the 11th?" before you schedule your 4 year olds birthday party.

Thanks for all the support, everyone!

Love, Michele

Friday, December 17, 1999 at 10:29 PM (CST)

Katie had another smooth day. Her teacher brought us a whole pizza left over from their school party today, as well as other assorted goodies. Katie's kindergarten class won the pull-tab collection competition (her entire school was collecting tabs to give to us!) so they won a pizza party. Then one of her girlfriends called tonight and she gossiped away. Katie had to cut the conversation short because we were about to leave to go to Lakin's house. The hurricanes tore up Lakin's house tonight!

In this month's Good Housekeeping magazine there is an article titled "A Horoscope for Little Stars." It fits Katie perfectly and I have to give you the first couple of lines: "The Gemini child is a communicator, a child of limitless curiosity with a vivid fantasy life. Perserverance and patience, however, are not among her inborn talents. And figuring out how to teach those traits is the greatest challenge for the parent of a Gemini child. She'll need you to help her understand that she can't give up when something doesn't come easily the first time and that escaping into something fun at the first sign of difficulty isn't the solution. The good news is that Gemini children are keen observers and learn much by example." All of this is classic Katie.

Can anyone else believe it is only one week until Christmas Eve? I am sure you all hardly need a reminder! Take care.

Love, Michele

Thursday, December 16, 1999 at 09:12 PM (CST)

Hi, everyone. Katie had her blood counts today, and she is doing great in everything except her ANC. This means that she doesn't need any transfusions (her hemoglobin was wonderful and so were her platelets), but her ability to fight infection is very low. We won't be going to the Nutcracker this weekend, but like I told her nurse, I would rather have her healthy and we can see it next year when she beats this. We didn't get to spend that much time with Riley and his mom, but at least we got to see each other. The kids did play a little, and I think Katie got a huge kick out of it. It certainly made my heart sing to see such a happy little boy who fought neuroblastoma and won.

My paranoia kicked in today, when I asked her doctor if her high hemoglobin and platelets were good. He said something along the lines of..."there is no pleasing some moms." But hey, I didn't know! When they sat us down two months ago to detail all the horrible things that were going to happen, I imagined that each and every one of them would come true. Well, here we are with a happy, energetic little fighter and we are so thrilled.

Have a great weekend everyone.

Love, Michele

Wednesday, December 15, 1999 at 08:51 PM (CST)

Hi, everyone! Katie had a great day today, with one exception. I had the nerve to leave and attend my work Christmas party, and I couldn't take her with me because her counts were too low. Daddy had to fill in, and she was very good for him. The party was a lot of fun - I miss you all at Senate Research! When I got home, they showed me two wonderful surprises - a gift certificate to Toys R Us from the Environmental Law Journal, and some angels from Joe and Aggie Rahs, friends of Mike's parents. These angels were taken off the Rahs' tree, repainted to represent our Katie, and sent to us from Pennsylvania. They also sent an adorable black Santa. The support we have gotten from all of our family, friends, and strangers has really been amazing. I can't find the right words to thank everyone.

Tomorrow we go to the clinic for blood counts, and we will finally meet Riley West, a neuroblastoma survivor. I have mentioned him in the past, if you remember. Katie is so excited to finally meet Riley. I asked her what they were going to do when they saw each other, and she gave me that "look" and said, "Duhhh, we're going to play, Mom." Silly me. Take care everyone.

Love, Michele

Tuesday, December 14, 1999 at 09:59 PM (CST)

Hurricane Katie was joined by Hurricane Lakin today. Too bad my forecast was for calm skies today, because my house was completely wrecked. The hurricanes enjoyed themselves, though. Lakin spent the day with us and the girls helped me bake cookies. They also hunted monsters in the house. I didn't know we had so many! The monsters ate the pizza, the cookies, and made Katie's room a mess. I had to vacuum three times today. But at least the girls had a great time, and that is what counts.

I can't believe that Katie's website has almost 400 hits! That is amazing. I hope you are all enjoying it. I know it has connected a few people that aren't on this update list. That is wonderful.

We had some terrible news today. One of our friends from years past has been diagnosed with thyroid cancer - Deenie Huey. Please add her to your prayers tonight. We have read over and over that people who are prayed for, even when they don't know it, feel better. We certainly can vouch for that. Take care everyone.

Love, Michele

Monday, December 13, 1999 at 09:15 PM (CST)

Hi, everyone. We had a busy day today. First, Pam (our home health nurse) stopped by for a 60-day checkup - unbelievable that it has been that long since we first met her. Katie is doing great! Her congestion is still a worry, but it is clear and it hasn't developed into an infection, so we are just giving her a decongestant and hoping for the best. Then, Ben stopped by with lunch (that of course, Katie didn't touch). He played card games with her, so she was happy. Miss Knepp came today and Katie had school, something she always enjoys.

The last time we were in for chemo, I found one of those magnetic poem sets in the solarium - the ones with individual words printed on each magnet and you are supposed to make your own poems. Well, I did one for Katie and Mike thought it was so sweet I should share it. I have to warn you all - the last time I shared one of my poems was in 2nd grade!

Ode to Katie

Child of sun
gorgeous petal
a star on the run
Ocean is blue
She is love
share comfort
from above.

Have a great day...

Love, Michele

Sunday, December 12, 1999 at 08:34 PM (CST)

Katie had a great day health-wise today, but got pretty mad when I had to go to the commissary without her. See, the commissary is major social time - she knows everyone that works there and everyone that shops there! Trying to explain to a five-year-old who feels good that she just can't go out and risk getting sick is insane! We are so happy that that is our biggest problem right now.

By the way, our tree has even more angels on it now and it looks even prettier. Thank you all so much! This is such a special collection now. It is our little angel's bedtime now, so I must go. Take care everyone!

Love, Michele

Saturday, December 11, 1999 at 10:14 PM (CST)

Hi, everyone. Today was a nice, even day. We played with some friends today, and even had McDonald's for lunch (although Katie ate very little of it.) We have been so excited over her website all day, and have checked it a million times. Thank you for all the comments - some of them brought tears!

The three of us tonight were all wrapped up in the cartoon movie "Balto" on Cartoon Network. Katie was just so enthralled with the story of the dog getting the medicine for the sick little girl. When the doctor was drawing the vaccine at the end, Katie claimed that shots don't hurt. We just laughed - if you could only see the stuff this little girl puts us through when she gets her shots! That's fine, though - she has been such a trooper and has been so amazingly strong.

Take care everyone.

Love, Michele

Friday, December 10, 1999 at 09:47 PM (CST)

It was a pretty quiet day here. Katie felt great and had a good day. She got the shock of her life today, though. She got a letter from Santa, and it even mentioned her friends Lakin and the Dove kids. She immediately had to call her friends to give them a heads up. She just keeps touching the letter. It is so funny.

Today is Greg Dove's birthday. For those that don't know Greg, he was Katie's foster dad before she moved in with us. Greg passed away last April, and we miss him a lot. Katie claims that the reason she feels so good and that the chemo is working is because Greg watches over her from heaven. It makes me cry every time to hear her say that. He originated one of her nicknames "Miss Rotten." Katie claims only Greggie can call her that! So sweet.

Take care everyone!

Love, Michele

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