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Friday, June 30, 2006 11:54 PM CDT
DAY #54 OFF TREATMENT
Working to get to Day #1,825 as uneventfully as possible!
Happy 4th of July!
Thanks for stopping by to check in on Katie. She’s been doing great and we’ve had two great, fun-filled weeks now. A wonderful start to summer!
First, I hope you all did get a chance to watch Part 1 and/or 2 of “Independent Lens: A Lion in the House.” I will be honest with you; I have it Tivoed, but I need to be in the right frame of mind to sit down and view it. From what I have heard, both parts are quite intense and not recommended for easy “before bedtime” viewing. As a result of the harsh reality you viewed in this documentary, I will continue to work to raise awareness of and research funding for pediatric cancer so that someday we can eliminate the pain and suffering that patients and their families endure.
Second, things are going well here. We’ve been enjoying summer immensely! We have been back to our normal schedule of playdates, classes, and playgroups. We’ve fit in a trip to Brookfield Zoo, a local wildlife rehab center (to view all the animals that can’t be released back into the wild), swimming at the local pool, visits with friends, and a big trip to Michigan!
Yes, we were able to hit the road last weekend! Our reason for doing so was to attend our friend Shelby’s off-chemo treatment party in Michigan, just outside of Detroit. The kids handled the almost six hour trip in the car just fine and had a great time once we got to the party. The weather couldn’t have been better and the park where the party was held was perfect. Unlimited popcorn, snow cones, cotton candy, cookies, a huge moon jump, tattoos, a playground, and a magician. What more could a kid want? It was a wonderful party, a big event to celebrate, and it was great to finally get to meet Shelby and her family!
(For those of you out there who never thought you could safely "meet" people on the Internet, Shelby's mom, Julie, and I, "met" through an online support group for families of children with ALL called ALL-kids. Find more info at www.all-kids.org.)
The day after the party we mosied home slowly and stopped in South Haven, Michigan to allow the kids some time at the beach. They LOVED it! Katie hasn’t been to the beach since she was 11 months old and Christian has never been to the beach. He had no problem getting used to the water and was enamored with the unending expanse of sand to keep filling up his bucket. Katie had a blast at the beach too. She was determined to make a sand castle as grand as the ones she sees in books. We didn't quite get there, but she worked hard! Surprisingly, we didn’t have too much difficulty dragging them away from all the fun. We simply tempted them with a visit to the ice cream shop and that seemed to do the trick.
Katie was intrigued by the buoys out in the water. She wanted to know what they were for, if they moved, if they were alive (!), and lastly, if she could swim out to them to touch them! So, I think next time we’re at the beach, she’s going to want to take a trip out to visit them.
This holiday weekend will be a fun one. Uncle Steve, Aunt Ruth and Cousin Michael are coming for a visit that will span the 4th of July holiday. Both Katie and Christian are looking forward to their visit. In fact, Katie mentioned several times to me today, that "I can’t wait." Then she added, "You know Mom, that means that I’m excited." : )
We are looking forward to the visit and hope to go see fireworks together. Katie has announced that she is no longer afraid of fireworks and wants to go see them. I will believe it when I see it, but she has heard a number of loud fireworks in the neighborhood lately and hasn’t broken into tears like she used to. So…we’ll soon find out if she's outgrown her fear of fireworks.
On the health front, Katie’s doing great and her next scheduled clinic visit is Friday, July 14. She will have a check up and blood counts and also a physical by the same surgeon who placed her port. We decided to get Katie’s port taken out ahead of schedule as it was just causing too much stress (for me and Kevin; it doesn’t bother Katie one bit) as every time she got a fever we would be worried and have to take all the necessary steps (clinic or ER visit; waiting for blood cultures results, etc.) to determine if she had a line infection or “just” a normal virus-induced fever.
Since her ER visit on Father’s Day included a peripheral (arm) blood draw and IV and she handled it extremely well, we decided that the port wasn’t necessary anymore, especially since she is no longer getting any chemo. Katie’s surgery to remove the port will likely be done during the week of July 17. As soon as we know more (after the July 14 appointment) we’ll let everyone know.
And, so life continues busily onward.
Fundraising for the Light the Night walk to benefit the Leukemia & Lymphoma Society continues full steam ahead. We have a very special fundraising show for Pampered Chef going on until July 15. At least 10 percent of your product total will be donated to the Leukemia & Lymphoma Society; 15 percent of your product total will be donated if our entire show total is over $600. If you (or a friend) are interested in doing a Pampered Chef show and book one, we will get an additional donation as well!
Simply log on to www.pamperedchef.biz/beckycooks4you to view a complete Pampered Chef catalog. You can then place your order securely online by going to the *Our Products* section and entering the team name, Katie’s Cheerleaders in the first name field where it says “first name/organization” to ensure we get credit for your order. You can also call me or e-mail me to view a Pampered Chef catalog and place an order.
Please take a moment now to see if there are any cooking, baking or kitchen tools you might need or want or find something special to give as a gift for upcoming weddings, birthdays, house warming or other occasions. Feel free to pass along the link: www.pamperedchef.biz/beckycooks4you and information to your friends, family, neighbors, and coworkers. As a bonus, with any $60 or more in product ordered you will receive the Small Batter Bowl for FREE!
Orders can be submitted online between today and 12 noon on Saturday, July 15, 2006; items can be shipped directly to you if you choose. I will be taking orders until July 15, 2006. If you have any questions, please contact me or our Pampered Chef Consultant Becky Thayer.
As always, thanks for your continued support and prayers for Katie and us! We appreciate it.
Love,
Amy, Kevin, Katarina & Christian
Tuesday, June 20, 2006 8:53 AM CDT
DAY #44 OFF TREATMENT
Working to get to Day #1,825 as uneventfully as possible!
Thanks for checking in on Katie. She’s feeling a lot better and we’re hopeful to have a more normal week this week.
I wanted to remind all of you of a special upcoming program on PBS called “Independent Lens: A Lion in the House.” I hope you will make time out of your schedule to watch this program to better understand how pediatric cancer affects not only children, but entire families. I hope this expose will shed some light on why I am so fervent about raising awareness of pediatric cancer and raising money to find cures for cancers that affect children.
This program will not be easy to watch. I know I will be taping (actually Tivo-ing) the show and only watching it when I know I can handle it. For those of you who haven’t had pediatric cancer hit your family, it’s easy to turn off the TV and walk away saying it’s simply too painful to watch. For the five families featured, their lives continue, no matter how difficult their situation is and what choices they must face. They can't "turn it off" and walk away from pediatric cancer eventhough they would probably like to.
In Chicago, Part 1 is being broadcast on PBS/Channel 11 on Wednesday, June 21 at 9pm and Part 2 is being broadcast on Thursday, June 22 at 9pm. Part 1 is being re-broadcast on Friday, June 23, 2006 at 2:30am and Part 2 on Saturday, June 24, 2006 at 2:00am. If you are using a digital video recorder (like Tivo) to record it, be sure to search for the program title “Independent Lens” and not “Lion in the House.”
Outside of the Chicago area please check this site to find out when and on what channel this two-part series will be shown.
I am also aware of a special “pre-quel” to Lion in the House called “Living with the Lion: Childhood Cancer.” I have only found that it is being broadcast in Houston, TX on their PBS station tonight, Tuesday, June 20, 2006 at 7pm and Sunday, June 25, 2006 at 5pm. If you learn of this being shown anywhere else, or better yet, can tape it for me, please let me know asap!
I feel a bit of a connection to the title of this series as well and can totally understand the imagery that they suggest. I don’t know if I ever mentioned that Katie has always played a “game” where there are pretend lions in our house. She will tell us to be quiet because there is a lion in the other room. Sometimes there are several of them. Often they are outside our house prowling around. Usually these lions aren’t overtly dangerous; they’re just playing with toys and games as Katie does. But still, we aren’t to go in the rooms that have these pretend lions and we aren’t to go outside when they’re in the yard. And, according to Katie, they leave on their own in due time and make their way back to Brookfield Zoo, our local zoo.
Thanks for considering watching this enlightening upcoming series and thanks for thinking of Katie.
Love,
Amy, Kevin, Katarina & Christian
Sunday, June 18, 2006 11:43 PM CDT
DAY #42 OFF TREATMENT
Thanks for stopping by to check in on Katie. This weekend has been much of the same as I have described recently.
We had plans to go to Oma’s for the weekend. It would be a fun, overnight trip. Alas, Katie spiked a fever on Friday evening and felt pretty blah. We pretty much decided we wouldn’t be going to see Oma over the weekend as we had planned. (There is that word “planned” again. Gotta stop doing stuff like that!)
We didn’t think too much of the fever as Katie had been acting great all day on Friday. I thought she was getting better. And, Christian had spiked a fever on Tuesday night as a sort of “last hurrah” to his cold. Since Katie’s cold had been about three to four days behind Christian’s we figured she was exhibiting the same symptoms as he had.
In the morning she seemed in good spirits, ate breakfast, and played after finishing eating. We made the executive decision in the morning to go ahead and do a day trip to visit Oma. This way we’d have a little adventure, but still have the comfort of being at home overnight.
The signs were on the wall though. The trip south was filled with several impediments. The main road south was just stop and go – hitting all the red lights, getting stuck behind overloaded, slow-moving trucks and then to find the offending truck turning and have another lumbering vehicle turn in front of us! When we finally got to the highway, it was at a standstill due to construction. ARGH! We should have just turned around at that point, but we didn’t.
The kids handled the 2 ½ hour trip well and talked, played, sang, or looked out the window. At least they weren’t annoying each other -- or us!
Once at Oma’s we all had lunch together and Katie ate well. Christian was his usual self too. After we finished our meal, we headed over to a little farm park. The kids enjoyed seeing baby goats, a calf, turtle, pigs, baby miniature horses (those were really cute; I had never seen any before), donkey, sheep, rabbits along with a baby bunny, turkeys and babies (have you ever seen a turkey baby--me neither!), llamas, cows, fish, and ducks. It was a great place for them to run around for a bit. Katie got tired though near the end. It didn’t seem unusual though as it was hot out and we hadn’t done much all week long. This was the biggest excursion in over a week!
The kids went back to Oma’s to play for a while. Katie took a short nap, Christian a long one, and then we all went out to eat. The meal went well and she ate, but Katie continued to act tired and lethargic. By the time we stopped for ice cream she was quite whiney about everything…definitely not her usual self.
We went back to Oma’s to change the kids into pajamas before heading home. Christian was fine for the routine. Katie got all worked up about it and managed to throw up all her dinner. She then was pretty beat and fell asleep for the car ride home. Christian, on the other hand, loved watching dusk turn to night. At one point, we saw a rainbow in the sky (it was lightly raining here and there) and Christian started yelling to Katie, “Katie wake up!” to get her to look at it. He wanted her to see it too! She was too zonked to even notice the hub-bub.
When we got home we put the kids directly to bed. Katie had a slight fever, but just a degree or two above normal. Nothing huge. In the middle of the night though she called out and it turned out that her temp under the arm was about 103. YIKES!
Kevin called the on-call onc and they recommended getting her seen in the morning if after giving her Tylenol didn’t bring the temp down. Her temp went down with the Tylenol, but by the time it was time to get up for breakfast, the temp was up again, and she was extremely tired and whiney. Another call to the on-call onc got us set up to go to our local hospital for a CBC and exam.
She did perk up for a short while to give Kevin his Father’s Day card and gifts. The kids decorated cards for him, helped pick out an outfit to give him, and chose a few photos to frame for his desk at work. I managed to find Kevin a cute book in German about how great Papas are.
And…so, this is how Kevin started his fourth Father’s Day…taking Katie to the ER.
The good news is that it was “just” an ear infection that was the likely cause of the spiking fever. What’s strange is that Katie’s pain tolerance level must be very, very high. She has never said that anything hurt at all…. And, the examining doctor thought it was odd that her ears didn’t hurt based on how they looked to him. They gave her an IV of Roceferin to take care of the ear infection.
The quick strep test came back negative and we’re awaiting results on the test that takes longer. They also took a chest x-ray to eliminate the possibility of pneumonia and that looked clear. They also took blood from her port and a peripheral draw for blood cultures to rule out any bacterial infection or line infection.
And, we finally got her first off-treatment CBC. All her counts are in the normal range and nothing was out of whack. Her hemoglobin was 11.2, platelets 172, WBC over 7 and ANC a whopping 5900. Her liver numbers were all great too and strangely enough, her ALT is actually below the normal range now!
The other thrilling news (for those of you who have frequent visitor cards to your local ER) was that being seen at the local ER saved a two hour plus total commute time and probably several hours in the ER waiting to be seen, waiting to get accessed, waiting for the meds, waiting for a over-booked doctor to examine Katie, and so on. Kevin said that there was simply no comparison between the local pediatric ER and the normal runs to the big city hospital ER that we’ve experienced. They left at 10am and were back by 2:30pm. Unbelievably fast in hospital time!
Poor Katie was so confused though. We were eating dinner and she asked, “Is this lunch or dinner?” She hadn’t really had a lunch so she had simply lost track!
The rest of the day was quiet…thank goodness! Unfortunately, this will be a Father’s Day that has unpleasant memories tied to it.
Despite all my whining (I must be picking up that habit from the kids) about our change of plans and the ER “adventures,” I still must say that we really have nothing to complain about. Katie’s doing well, her counts were great, and an ear infection is so minor in the whole scheme of things.
We are continually very grateful that Katie is doing well and we still get to do things – even if abbreviated or delayed. There are so many other kids and families facing far greater battles than the inconvenience of a half day at the ER for some antibiotics. Please keep these kids in your thoughts and prayers too.
As always, thanks for checking in on Katie.
Love,
Amy, Kevin, Katarina & Christian
Friday, June 16, 2006 9:20 AM CDT
DAY #40 OFF TREATMENT
Thanks for checking in on Katie. It’s been a crazy few weeks. Katie’s doing okay, but we’re having a rough start to our summer. I envisioned carefree days lolling along for walks, visiting the pool with friends, and cavorting around parks and zoos and such.
Scrreeeech! Rule number one is to never make such plans. Plans are meant to be broken, of course!
The Sunday over Memorial Day weekend Katie got a fever in the afternoon. And it would rise as the day wore on into the evening. She never felt particularly bad, but you could tell she would slow down and get more irritable as her temp would rise.
This continued on Monday, Memorial Day. We called the on-call onc. Since Katie still has her port-a-cath, they want to know when fevers arise as the risk of a port infection is still there. No concern by the onc really except to watch things and if it spiked high, to call again.
We didn’t want to bother clinic on Tuesday after Memorial Day anyway so the fever did it’s thing on Tuesday as well.
Wednesday I e-mailed the nurse practitioner to tell her the fever was still lingering…since Sunday. She advised to watch it still, but plan for an unscheduled clinic visit on Thursday or Friday so they could draw blood to make sure it wasn’t a bacterial or line infection. ARGH. Unplanned clinic visits…still.
Thursday the fever persisted and we relented, making plans to take Katie into clinic on Friday. Mind you, we did NOTHING all this week. Katie felt blah, it was hot out, and she had a fever of unknown origin. I really didn’t want her to spread this possible virus-induced fever to her friends so we canceled all our playdates and get togethers that week. Cabin fever in May and June, who would have predicted that?
The thing that was weird was if it was a virus, why didn’t Christian have a fever? The poor guy was totally 100 percent well that week. No signs of any illness slowing him down. In fact, canceling all our activities pent up even more of his energy!
Alas, Friday morning Katie and I drove down to clinic (in record time I might add; everyone must be on summer schedule, i.e., not going into work anymore) and the fever was gone. Normal. They took blood for cultures, bloodwork, and a liver panel (given her past history with viruses and liver involvement).
We got home in record time too to learn that the liver panel numbers were back and were all normal. Yay! The blood counts? Well, this had never happened before, but the blood they took clotted before they could run the counts. The nurse practitioner joked that at least we know Katie’s platelet count (clotting factor) is high! Very frustrating, but at least the fever was gone. We have never had Katie’s blood sample clot like that before.
The other good news is that the cultures grew nothing so no port line infection.
So…we proceeded to have a normal week last week. We saw friends, we went places, the kids played.
Then Sunday hit. Christian came down with a horrid cough and terribly runny nose. And, then Katie got it. The worst part was that her cough would prevent her from sleeping at night AND from being able to take a nap during the day. So…back to quarantine again. Christian was a mucky mess for a couple of days.
And, between the both of them hacking, it sounded really lovely. I think the reason the streets were deserted as people heard them coming and went inside to avoid catching the bubonic plague (or what I imagine the cough from the bubonic plague to sound like). So we’ve been holed up this week as well with a few jaunts to the grocery store or Target, but other than that it’s been in the yard or house.
So, in some ways, I’m glad that the official start to summer is still on its way, June 21. I guess we’re having a rough end to our spring if you want to be official about it….
Regardless, Katie’s next scheduled clinic visit is Wednesday, June 28. Her first off-treatment visit was scheduled for June 14, but since we had that unscheduled clinic visit on June 2, we could delay the next visit since she had her port accessed. She needs to be seen every four to six weeks to keep her port functioning and it coincides with the off-treatment check ups that she is scheduled to receive as well.
I’ll leave you with some recent exchanges and observations from both Katie and Christian….
Christian finally said his first three-word, almost four-word, sentence. We were in Target looking for a greeting card and there was a birthday card he noticed and announced, “Monkey ride ‘cycle…hat.” The card had a chimpanzee riding a bicycle and wearing a birthday hat. He was very accurate in his description!
****
Katie was playing with her new hula hoop in the living room. She comes into the kitchen (where Christian is sitting) and he looks at the hula hoop.
She tells him, “Christian, it’s a hula hoop.” She proceeds to put it around her middle and try to keep it going. She looks at him while doing this and says, “You can’t do this.”
I say, “Christian can do it if he practices.”
Katie says, “Girls can do this when they wiggle. Boys can’t do this. They can’t wiggle.”
****
It has been warm out and the kids have been wearing short sleeves and shorts lately. It suddenly got colder last week and weekend and we had to wear pants and long sleeves to avoid wearing a jacket. One morning Katie asks Kevin, “Are we wearing long arms or short today?”
****
Katie told me this idea she had. “I want a cloud. You know that cow that jumps over the moon? I’m going to give him a rope. He can tie the rope to the cloud. When he lands, then I can pull the cloud down. I want a cloud kabuz they are poofy.”
****
Katie on clothes. “Little underwear are for little kids. Big underwear are for big kids.” Lamenting how her underwear are now too small.
****
On June 4, 2006 (had to mark down the exact date of this one) Christian officially showed us how differently boys think. He was playing with the wooden train sets in the basement. Katie also enjoys playing with these trains…quite peacefully. Well, on this date, Christian started taking train A (Thomas) going one direction on the track, then took train B (James) going the opposite direction on the track. When they met, face to face, on the track, he would yell, “Oh no! Crash!” Sigh. He’s all boy!
****
We walked into our friends’, Kay & Peter’s, house and there are cats flying around everywhere. (When you have eight cats I think you can rightly say that they are flying around everywhere!) The cats are all discombobulated as there are (gasp!) little people around. What to do? What to do?
Christian and Katie are taking it all in. We have finally realized that the Siamese, Pixel, will play with the kids and another kitty, Aramis, will play with them, but not let them touch him.
I am standing there and looking around for cats when I notice Petrarch. I say, “There is Petrarch. Christian, up. Look up. He’s up there.” Petrarch is in his favorite spot on the landing overlooking the great room, with his head between the rungs in the railing, studying us all.
As it so happens, Christian also likes to stick his head between the dowels in the railing in our stairs. (Our house is about 27 years old and the code allowed for wider openings than current new construction.) Christian often gets his head through the railing, but then can’t pull it back easily as his ears get him stuck. We often have to help him get his head back through the railing and tell him (again and again) to not do that.
Christian finally spots Petrarch up on the landing between the railings. He points up to Petrarch and yells, “Stuck!” As in Petrarch is stuck in the railing just like Christian does at home! Why else would a cat or anything else be between the railing?!?!
****
Thanks, as always, for checking in on Katie. We appreciate the continued thoughts and prayers! Please remember to keep all kids fighting pediatric cancer in your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
P. S. Visitor number 25,000 was Laura C. from Colorado, a first time visitor to Katie’s site. Thanks to everyone for faithfully keeping up with us!
Sunday, May 28, 2006 11:49 PM CDT
DAY #14 OFF TREATMENT
Thank you for stopping by to check in on Katie. She’s been doing great, but we’ve had a lot of busy days here lately.
I suppose I should let you in on the stats from the garage sale. Drum roll please!
The total amount we raised at the garage sale was $1,852.34! Yes, that is correct; over $1,000. We must thank our very generous and thoughtful neighbors who surprised us at the end of the garage sale and gave us an envelope containing $105. They said that they had their garage sale and wanted to give all their proceeds to the Leukemia & Lymphoma Society! We were very touched by their generosity.
I must also add that very little was given as a direct donation during our garage sale. If I remember correctly, the biggest single donation was about $4 when someone who bought $6 worth of items gave me a $10 bill and said to keep the change. We just sold a LOT of stuff!
The other big news is that Katie’s big End-of-Chemo/Light the Night Fundraising party was a HUGE success! (See photos here.) Katie walked into the restaurant and saw all the inflated animals, balloons and games and just smiled really, really big! She was so excited to see all her friends that evening. We were glad so many of our friends and family could attend and share the special day with Katie.
In fact, we had over 62 people join us for the celebration to have some tasty pizza and cake. We raised $515 for the Leukemia & Lymphoma Society! It was all through generous donations and purchases of greeting cards, journals, Relentless for a Cure magnets and wristbands.
The winner of the $25 Home Depot gift card was Elaine P. Katie drew her name out of the basket while we were still at the restaurant.
The winner of the $20 BP gas card was Alicia B. She guessed $1,850 for the garage sale and the actual amount we raised at the garage sale was $1,852.34!!!
The winner of the $10 Starbucks gift card & the jar of M&Ms was Joy K. She guessed that Katie took 1,654 pills and the actual number was 1,725. The thing that I realized after we had the drawing was that I forgot to add the number of steroids pills Katie took which would add about another 240 pills. So, Katie has taken at least 2,000 pills in the last 26 months. I didn’t even add up the spinal taps, port accesses, and IV chemo and IV antibiotic stuff she’s taken. UGH! Lots of meds!
After we got home from the party on Wednesday night, Katie was complaining that her right pinky finger was bothering her. We looked at it in the bath and it didn’t look or feel funny, but she wanted a band aid and we gave it to her. She slept fine that night and we didn’t think anything of it.
Thursday morning she gets up and we notice that her left pinky finger is swollen and black and blue and she admits that it hurts. Great. We get through the party and now what?
I call Katie’s nurse practitioner and she says to go to the regular pediatrician. I am a bit nervous as we haven’t been there with Katie since she was diagnosed! And, I’m nervous as the place is probably filled with germs from every illness known to mankind. And, I have to take both kids with me to get Katie’s finger looked at. UGH!
Miraculously, we get a 10am appointment with the doctor who originally sent her to get a blood test back when she was diagnosed to “rule out anything major.” Another thing that just doesn’t make me feel too great.
We get there and I get her signed in and she’s in fine spirits. Christian is the one who is panicking. He knows we’re at the pediatrician’s and he does NOT want to be there! No matter how much I tell him it’s all for Katie and he just has to sit there, he bawls…loudly…in the waiting room, on the walk to the exam room, in the exam room, on the way out of the exam room!
The pediatrician looks at her finger and says it could be a sprain...or a break. He sends us off to get x-rays to “rule out the break.” Fun. Another germy place…most likely with another wait involved.
The thing is that it’s 10:30am and we have a German class for the kids at 10:35am. I am loathe to skip it as it’s difficult to make it up, it cost a lot of money to just blow it off, and the kids really enjoy it.
So…I make the executive decision that the x-rays can wait until the class is over in 85 minutes. I give a heads up to Katie’s teacher to make sure that during class Katie doesn’t bang her hand, hold hands with anyone, or if she starts complaining to let me know asap as I’m in the room next door with Christian.
The kids finish their class and we all eat Burger King in the car as I drive to the x-ray imaging office. We get there and, unbelievably, there is only one other person ahead of us. It’s a middle-aged woman who has no outward signs of needing an x-ray. Katie must have noticed this too.
She asks me when the woman is called back, “Mommy, why does she need x-rays?” I tell her I don’t know. Katie then speculates, “Do you think something is wrong with her arm? Maybe she’s going to get a new arm.” Wow! This poor woman goes from having nothing obviously wrong to getting a new arm all in the course of minutes due to Katie’s observations and on-the-fly diagnosis. Just so you know, the woman left quickly and had both her old arms…no new appendages.
We got called back relatively quickly and passed the time in the waiting room “reading’ garden and women’s magazines by looking for cute animals in ads and stories, counting the number of candies or make up bottles in ads, and identifying foods in dinner ads. Luckily there were lots of interesting ads to inspect!! And, luckily, there were lots of magazines to go through.
Katie did great getting an x-ray. I warned her that she would have to stay in the room by herself while they took the pictures of her hand and she was hesitant about that part. She handled it so well though. We then had to go back to the waiting room (and “read” more magazines) and wait for the imaging center doctor to call the pediatrician who would then call the hall phone in the imaging center where he would tell us what the situation was. (Talk about round about way of doing things, eh?)
Finally the call came through and the read on the x-ray was that soft tissue was inflamed, but there was no break. Yay! They told me to have Katie put ice on the finger, elevate it and give her Ibuprofen as necessary. Yeah, for a 40-year old that’s good advice, but for a 3-year old? I managed to get her to wrap a cold wet paper towel around the finger for a while that afternoon. Since she wasn’t complaining about the finger and the swelling had started to go down slowly, I didn’t give her any Ibuprofen either.
Here it is several days later and her finger is nearly back to normal. I’m grateful for that, but the way she’s been tripping and bumping into things lately, she’s going to be one giant bruise all summer long. (Tell me how she can “kick” a small plastic zebra that was on the floor and manage to gouge her toe open? Or, try to open the refrigerator door and slip and land on her knee…hard?)
Here it is Memorial Day weekend. The start of summer and it really, really feels like summer here. The highs are in the 80s and it truly feels HOT out. The kids love it of course. We have no real plans for the weekend as we need some downtime after the garage sale and party last week.
It’s hard to believe but we’ve raised over $2,300 in less than a week for our Light the Night walk. Our goal is still a lofty $13,000 and we’re just about 23 percent to our goal. Please remember there are a few ways you can help us reach our goal to “raise $30K in 3 years” for the Leukemia & Lymphoma Society.
1. Subscribe to a new magazine, renew your existing subscriptions or give a gift subscription to someone using our special fundraising site.
2. Buy a Relentless for a Cure magnet or wristband.
3. Recycle your ink jet and toner printer cartridges and old cell phones with us.
4. We have another fundraiser at Max & Erma’s restaurant in Warrenville, IL (at Cantera) planned for Tuesday, July 25, 2006. The restaurant will donate 20 f your bill (whether you go for lunch, dinner, snack and/or dessert) to Katie’s Cheerleaders for The Leukemia & Lymphoma Society. Please print out the coupon and use it when you visit Max & Erma’s in Warrenville, IL; feel free to pass along coupons to friends, family and coworkers too. The more the merrier…and the more raised for the Leukemia & Lymphoma Society. Please note that the coupon is ONLY good on Tuesday, July 25, 2006 at the Warrenville, IL location.
5. Donate directly to LLS on Katie’s Cheerleaders’ fundraising site.
We will have more fundraising opportunities coming along shortly. Stay tuned for details how you can help the Leukemia & Lymphoma Society raise money for a cure! As always, thanks for your continued support! We couldn’t raise as much money for LLS as we do without your generosity!
There are still lots of kids with ALL struggling through some tough times. Please keep all kids fighting pediatric cancer in your thoughts and prayers. And, as always, thanks for your support and thoughts and prayers for Katie!
Love,
Amy, Kevin, Katarina & Christian
P. S. If you are visitor number 25,000, please sign the guestbook to let us know and Katie will paint you a special picture. She's now doing flowers! : )
Monday, May 22, 2006 4:38 PM CDT
DAY #8 OFF TREATMENT
Thanks, as always, for checking in on Katie. She’s doing very well! It’s been one week since she took her last oral chemo and none of us have missed the before bedtime ritual one bit. We haven’t made a huge deal of it, but we did take the opportunity to indulge in some ice cream after dinnertime this week.
Katie had her school’s end-of-year concert on Tuesday night. Katie was very reluctant to go although she knew all the songs (ABCs, Jesus Loves Me, Twinkle Twinkle, etc.) by heart along with most of the hand motions. I had been teacher helper last Monday and saw the rehearsal. Katie did great when there wasn’t a big audience watching her.
We talked to her all weekend and beyond and finally told her that if she went up to the front with all the kids and didn’t cry, afterward we would all go out for a milkshake to share to celebrate. Mind you, she didn’t have to sing, she didn’t have to do any hand motions, nothing. She just had to walk up to the front and stand with all the kids -- without crying.
We got to school and she was excited. She saw all her teachers, many of her friends, and the lure of that milkshake was still dancing in her head. After a few announcements, the teachers called all the kids up to the front of the church. (The little school she goes to is in the basement of a local church and the concert was held upstairs in the sanctuary to accommodate all the proud parents and siblings and grandparents…and aunts and uncles and cousins and neighbors and friends!!) : )
We had gotten there a bit early to get a seat near the front so we could see Katie and she could easily see us. I think some of her anxiety stemmed from knowing that we were in the sea of people out in front of her, but not exactly where. She walked up to the front, beaming. And, she stood with her friends and belted out all the songs with many of the hand motions. She was so giddy up there that when everyone clapped for the kids, she clapped along too! She was having a blast! She kept looking at us throughout and I taped some of the concert as well due to our excellent seats!
After the concert was over, we headed back downstairs for cookies and juice and for her to show off her classroom. She wolfed down her cookie and wanted to leave…for that milkshake. We then went to get the milkshake and we all shared it. She was very proud of herself as we were of her!
Last week we also had the mega fundraising garage sale to benefit the Leukemia & Lymphoma Society. Let’s just say that I’m still recovering from sorting, pricing, stocking, lifting, negotiating, and bagging. It was a total success--far beyond our expectations--but it was a TON of work.
I also met some wonderful people who saw our garage sale signs and were drawn to the sale due to its fundraising nature for The Leukemia & Lymphoma Society. I heard some wonderfully uplifting stories from people – an elderly gentleman living with leukemia, an 11 year survivor of lymphoma, and many of the silent visitors who gave us extra money as a donation or purchased a “Relentless for a Cure” wristband or car magnet without sharing their connection to blood cancer.
Alas, I cannot yet share with you exactly how much we made, but please tell us your guess by signing the guestbook. The person who is the closest (amount will be revealed on Wednesday, May 24 at Katie’s party and posted online on Thursday, May 25) will “win” one of Katie’s original rainbow paintings. The only hint I can give you (to level the playing field) is that the amount is over $1,100…. Let the guessing begin! : )
And, with the garage sale occurring, Oma came for a visit. Katie and Christian were very happy to have Oma here to play with. And, we believe that they wore out Oma too! : )
The one important thing I need to say to everyone is a big – no huge -- thank you. The garage sale could not have happened without all the help we received from everyone. From all the quality donated goods, to the time people gave to help sort and price, to those who distributed flyers and came to shop, to the ads we were allowed to have in our neighborhood newsletter, to the special notation put on the neighborhood garage sale maps listing ours as a multi-family sale to benefit LLS, to the tables lent to us by friends, and even to Oma coming to take over childcare all made this sale possible. Without all of our helpers, we couldn’t have done this sale and we thank you for allowing us to really do more than we had ever hoped!
And, I have also thank one of my previous employers. In my previous life, I would have to go to national conventions several times a year. I helped man the booth and sell and explain our products to everyone at the show. Boy, that work experience really came in handy during the garage sale. I felt like I was back on the convention floor once again! I even slipped up once and said “show” instead of “garage sale!”
Katie’s last day of school was today. She painted pictures for her teachers and we framed them. They came out so cute and now it makes me want to frame all the kids’ artwork. : ) I think she’s going to miss not having school weekly during the summer, but hopefully all the extra playdates and excursions we take will be a good replacement until school begins again in September.
We are getting ready for the big fundraiser/celebration party on Wednesday to celebrate Katie going off treatment. If you are interested in attending, please e-mail me for details. There is still room at the restaurant for more guests! It’s from 6 to 8:30pm in Naperville. We look forward to seeing you there!
And, despite all the good news of Katie doing well, the garage sale being a phenomenal success, and the upcoming exciting party, there are still a LOT of children struggling out there with ALL and other types of pediatric cancer. Please know that many of our online friends are facing struggles beyond what we have had to endure and that our hearts go out to them. Please keep these friends in your prayers.
Thank you for stopping by to check on Katie. We appreciate your continued thoughts and prayers for her and us!
Love,
Amy, Kevin, Katarina & Christian
Sunday, May 14, 2006 11:54 PM CDT
Happy Mother's Day!
Katie ran into our room this morning and first thing said to me, "Happy Mother's Day!" The kids, with the help of their Daddy, gave me some really nice framed photos of them. Very cute...if I say so myself!
The kids had a fun day today and got to spend some time outside...finally. It's been cold and rainy here since Thursday.
And the big news? Today was the last dose of 6mp! Katie's officially off-treatment! Yay! A perfect ending to Mother's Day and a wonderful, memorable gift on Mother's Day!
Since today was all the build up to Katie's last dose of meds, I thought I'd share a bit about Christian instead....
For some odd reason, just yesterday Christian has started calling me "Amy" instead of "Mommy." I seem to recall Katie going through this phase as well, but it's a bit disconcerting to hear you child call out your "real" name when they want/need you!
Christian is still working on his language and communication skills as you can tell. Christian loves Thomas the train and all his friends. In fact, he studies the catalog and flyer and can name almost all the characters anymore. For some odd reason, he grew very attached to Percy, the small green engine, for those of you out of the loop. Well, he calls Percy, "Per-sah." And...he also calls Thomas "Per-sah" no matter how much we correct him.
Well, I was chatting with Christian yesterday and was having him repeat certain words and phrases back to me. His full name is Christian Thomas so I asked him to say that back to me. What did he say? "Christian Per-sah!" So...according to him, he's rechristened himself.
Thanks for checking in on Katie. She's doing great!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): TODAY!
Tuesday, May 9, 2006 7:47 PM CDT
Thanks for stopping by to check in on Katie. She’s doing great. We’re only five short days away from off treatment! We still cannot believe it is almost here.
We aren’t making a huge deal of it with Katie as we’d like to keep her compliant in taking meds as “simple” as Tylenol. If we tell her no more meds, she might take that literally and then we’d have problems later on. We did take a celebratory photo of her taking her last steroid dose this evening. Getting through those steroids each week is always a test of her patience and endurance…and ours. I am glad to see that med go away!
Katie had her last chemo clinic visit on Friday, May 5. The spinal tap went well and the results were clear. She got her last IV vincristine at this visit as well. The clinic staff was eagerly waiting for her with a big poster that announced “Last Chemo!” She got some special presents too for her last chemo visit – a Strawberry Shortcake little doll house and an electronic Candyland game. She loves them both and was beaming to receive these special toys! After her spinal she also got to choose a toy from the treasure chest and chose an automatic race car – to give to Christian!
Her blood counts were pretty good. Her liver levels are on the rise again, but since she only had a week of chemo left, we’re hopeful that she can get through this week and then her liver can rest and get back to normal once again without having to filter various chemo drugs anymore.
Katie’s next scheduled clinic visit is Wednesday, June 14. We are going to be heading back to clinic about every 4-6 weeks for the next year for Katie to get bloodwork done and a general check up. We are no longer tied to Fridays as clinic days any more. What are we going to do with ourselves when we have Fridays free? Wow! The possibilities are endless….
We still have a number of concerns even though Katie is going off treatment. She will continue to have her port (for easier blood draws) and we need to make sure she doesn’t bump it. Also, if she gets a fever, we will continue to call the on-call onc as she could conceivably have a port line infection. So…the fever watch continues, but at least we will lessen the number of pharmacy runs and the evening medication drill will be absent from the evening bedtime routine. Yay!
And, you might be wondering what has Katie been up to? Well, she managed to get back on 100 percent chemo (which she is on right now) and stayed there with good blood counts and normal liver levels. We were grateful for the weekly home nurse visits to confirm her liver was handling the chemo okay and that she could move up to the full dosage.
Katie also was able to be a flower girl at our friend Sarah and Shawn’s wedding at the end of April. She loved dressing up and dropping the petals and did a great job. She had no apprehension except during the ceremony she got tired of standing up at the front, called out, “Mommy!,” and came to sit with me. When the recessional started, she ran back up to the front and was the last one back down the aisle.
At the reception, she loved the music and wanted to dance at every opportunity. She danced with her Papa and with Christian quite a bit. Christian was also quite the dancer and wanted to stay on the dance floor no matter what type of music was playing. They both had a blast!
And, since the wedding was in Virginia, we were able to get our long-awaited and much-anticipated vacation. We rented a mini van (with built-in DVD player) for the trip east and the kids handled the 14 hours in the car there just fine. (Mom and Dad were pooped from the drive, but the kids were raring to go!)
While in the DC area, we did the “tour of friends” having a meal at a different family’s home each day. The kids handled the running about just fine and we really lost any sense of schedule. Regardless, they managed much better than we expected.
And, on the last day in the area, we were able to steal away to go into the District and walked around the Tidal Basin and Jefferson Memorial. The kids were enthralled with it as the walk allowed us to see cars, trucks, tour buses, bicycles, and other vehicles on the road; trains going by on the tracks across the road; government and military helicopters overhead; and many airplanes taking off from National Airport. It was like a transportation cornucopia for the kids. As a result, the walk to the Jefferson Memorial was less tedious than we feared.
Then, when we got to the Memorial, there was what appeared to be a flag corps rehersal going on. So, the kids were entertained with music, flag processionals, horses, and announcements. The kids loved that. We even walked into the Memorial and even though they can’t comprehend what a president is, who Jefferson could remotely be, or what a Memorial is in concept, they were overwhelmed by the size of the structure alone and the fact that everyone was walking about talking quietly and taking photos. It was a truly memorable visit and I’m glad they got to see it. (Yes, their mother is an American History major who will drag her children to every *boring* historical site known to mankind before they are 18.)
When we were leaving the Memorial, the flag corps rehearsal was taking a break before starting up again. A couple of soldiers were standing off to the side in the shade with one of the horses. Katie sat on the lower steps and was staring at the horse. Before we knew it, the soldiers had signaled to someone across from them and they then walked over to us and asked Katie if she wanted to pet the horse. She was delighted and we were so happy she got such an experience right in front of the Jefferson Memorial!
The drive home from DC was *only* 13 hours, but again, the kids did great. They didn’t even watch that many videos. The enjoyed seeing mountains in Pennsylvania, watching all the trucks, playing with toys, reading books, coloring, snoozing, or snacking. It really was a nice trip both ways.
And, here back at home what is new? Christian turned 2 on the 1st of April. He had a train cake for his birthday and got lots of fun toys. If it involves wheels or legs he loves it. He is obsessed with anything related to transportation, bugs, butterflies, birds, and books and got lots of those items for his big day.
At his two year check up, he weighed in at 38 pounds, 2 ounces and 38 inches tall…which is the average size of a THREE year old. So…he is big. He continues to grow on his own growth curve off the regular growth chart that he has from the very beginning!
The weather here has been absolutely gorgeous and we have been spending a ton of time outside. The kids love it and have been biking, golfing, swinging, sliding, hopping, hiding, digging, climbing, throwing, skipping, running, and crawling in the sunshine! Katie’s school class ends the week before Memorial Day and the kids’ German language class ends in early June. We are slowly winding down the school year and it feels like May has arrived much too quickly.
We are also in the midst of planning a big off-treatment party for Katie on Wednesday, May 24. It is a special fundraising party to raise money simultaneously for Katie’s Cheerleaders who will once again be participating in the Light the Night Walk to benefit the Leukemia & Lymphoma Society. We would invite everyone with an open invitation, but we are throwing the shin dig at a restaurant and there is a limited amount of seating available. If you are in the area we would love to save a place for you. Send us an e-mail if you would like to come to Katie’s party and we’ll give you all the details.
We’re also doing a garage sale to benefit the Leukemia & Lymphoma Society. Our garage is nearly full with donated items we’re hoping to sell to raise money for Light the Night. The kids don’t quite grasp what a garage sale is and keep wondering why we have extra car seats, toys, lamps, books, and clothes collecting in boxes and bags in the garage!
And, I must leave you with a special quote from Katie. She has really, really been into golf lately. She was swinging the (toy) club and hitting the (toy plastic) ball every so often. After one big swing where the ball flew pretty far, she exclaimed, “I’m a WONNER!” And, so it is. She is a wonderful winner, otherwise known as a “wonner.”
As always, thanks for stopping by to check in on Katie. We appreciate all the thoughts and prayers on her behalf!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 5 days
Sunday, March 19, 2006 11:46 PM CST
Sorry for the delay in updating Katie's blood counts and liver levels on Friday. Blood counts were whacky high due to her being on steroids last week. But they looked fine and were normal as they could be following steroids.
And, the liver levels are looking good. Her bilirubin, conjugated bili, AST and ALT are all within the normal range. Yay! She's been feeling good as have we with the good news.
She's still on 50 percent oral chemo here at home for the next week. Her next home nurse visit is Friday, March 24 to check her blood counts and liver levels again.
Thanks for stopping by to check in on Katie!
Thursday, March 16, 2006 10:46 PM CST
Thanks for checking in on Katie. She’s doing fine despite this horrid cough that is still lingering. She asked me today, “Mom, when is my cough going to go away?” Hmmm. I wonder about it myself. Alas, it’s better than the cough she had last year which lasted from October to May. This one is nothing in comparison.
Steroid week went pretty smoothly as well. Katie was a little more emotional, a little more clingy and a lot more hungry than normal. Her comment everytime she took the steroids, "Blech. Dexamethasone is no good." She still hates taking a bath while she's on steroids. Does dexamethasone cause someone to be repulsed by water?!
We’ve been back to the usual busy routine again. Seeing friends, going to classes and playgroups, and going to stores once again. Now if we could get outside some to run around a bit, everyone would be even more happy. We got a dusting of snow here today, but the wind has been downright blustery lately. So windy that I think it’s dangerous to be out. We had garbage cans dancing in the streets yesterday and I’m just afraid some big branch or odd piece of debris is going to smack one of us while we’re outside trying to “enjoy” the weather. Just in the past two days we’ve seen everything from the ubiquitous plastic bags flying around, but also flower pots, shoe boxes (?), tree limbs, and a patio umbrella bouncing through the park, our yard, or down the street! If the temps warmed up some, it would be good kite flying weather…provided you wore a helmet to protect yourself from the flying debris....
As some of you may remember, March 17 marks two years since Katie was diagnosed with Acute Lymphocytic Leukemia. 2004 seems like a whole ‘nother world in some ways. Two years ago on March 17 Christian wasn’t even born yet. We could not fathom two plus years of treatment for Katie. Making the University of Chicago a familiar place for all of us seemed wrong. It was an eternity to grasp the duration of treatment and how it would affect Katie…and all of us. And, yet we’ve all made it. Katie is very, very close to going off-treatment which at diagnosis seemed like eons from that dark day.
Off treatment talk brings up the topic of remission. Everyone always asks when they find out that she’s still undergoing treatment, “Is she in remission?” When you say yes, everyone is relieved…as are we. But, it’s a little more complicated. The dictionary.com definition of remission is “abatement or subsiding of the symptoms of a disease; the period during which the symptoms of a disease abate or subside.” Granted, this is the 3rd dictionary definition of remission, but relevant nonetheless.
A more useful definition of remission in Katie’s case is from the National Cancer Institute dictionary of cancer terms. There the definition of remission is, “A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”
And, as some friends with kids who have undergone treatment with ALL have said, the leukemic cells might still be in the body, but hopefully with the long duration of chemo treatment, the body learns to attack those cells and not let them replicate again. That is what all of us hope and pray about continuously. (And, if you think Katie’s treatment was long at 26 months, most boys with ALL are on treatment for 3 years!)
Fortunately, Katie was an early responder to the chemo drugs that she started taking immediately upon diagnosis. She reached remission by day number 7. That means seven days after she started the treatment protocol (IV and oral chemo) her body stopped producing/replicating cancer cells.
One sobering thing we have learned on this path is that achieving complete remission quickly the first time around and 26 months of treatment doesn’t automatically give Katie a freebie ticket to never have to worry about leukemia again. According to St. Jude’s website, patients who remain leukemia-free for 10 years or more can be considered cured. I don’t know if worry is ever going to go away for us....
But, we are glad that Katie was a rapid responder to treatment which put her in remission quickly. We are very relieved that she has handled/is handling treatment as well as she has/is; many other kids have many more complications than she has had. We are excited that Katie is almost done with treatment. We are thankful for all of you supporting us all down this path all this long while. (Thanks for not jumping ship on us! Believe me, we wanted to jump off the ship many a time!)
And, with all this hub-bub surrounding the impending end of her treatment, I do have to let you know that Katie will continue to have her port-a-cath for probably the next six to twelve months. She will need to go into clinic about every 4 to 6 weeks for bloodwork and to keep the port functioning. And, using the port to get blood counts from Katie seems the most logical and least traumatic way to get blood from her. Doing a poke in the arm or finger each visit seems unusually difficult. I know a lot of our friends with ALL who got their ports out literally the same week they finish treatment. Katie will keep hers a while longer.
I know that some of you pictured us all riding off into the sunset nary a worry after May 14. Unfortunately, we’ll continue making a long trek to clinic monthly, keeping an eye on Katie’s counts monthly, and worrying about that port so that she doesn’t bang it or fall on it. And, although she’ll be off all her nightly meds and can eat ice cream (or whatever tickles her fancy) until the minute before she brushes her teeth before going to bed, she’ll still be taking a preventative antibiotic twice a day, two days a week for about six months after she finishes treatment. So, I’ll still be hitting the CVS Rx drive thru monthly. Old habits die hard....
Now that I’ve managed to put down in writing many thoughts and pieces of information that I don’t like to focus on as end of treatment doesn’t mean a magical “end of worry,” I would like to share some fun news. I would like to let you know that we are hosting a grand “End-of-Chemo/Light the Night Fundraising Party” for Katie on Wednesday, May 24. Details will be available shortly. We are very excited to have a party to celebrate this milestone in Katie’s life.
Katie has a home nurse visit on St. Patrick’s Day, March 17. We’ll see where her counts are and make sure that her liver values are where they should be now that she’s been on 50 percent oral chemo this past week.
As always, thanks for stopping by to check in on Katie. We appreciate all the thoughts and prayers on her behalf! Happy St. Patrick's Day!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 1 month, 26 days
Tuesday, March 14, 2006 11:50 PM CST
Thanks for checking in on Katie. She continues to do well…despite this being a steroid week. (Last dose is on Wednesday morning, but who’s keeping track?!) Health-wise we have nothing to report. That is very, very nice to be able to say!
The weekend was so normal it was downright weird. We went outside and enjoyed the warm weather. We went to a restaurant for a meal. We went into stores…all of us together. We saw friends and the kids played with them. We went for a walk…outside…in the dark. (It was warm on Saturday here…really warm for early March!)
The highlight of the weekend was a little date Katie had with her friend John. We had planned a little get together to go play mini golf at an indoor place a few weeks back. Well, Katie’s liver issues prevented us from going and we rescheduled. Finally, this Sunday we met John for mini golf and although Katie has never played before, she watched John hit the ball on hole one and took off with no problem after that. Strangely enough, she was using the club lefty the entire time. I figured if she was comfortable with it, why force her to change unnecessarily? She and John enjoyed playing all 18 holes. And, John even got a hole in one! Pretty good for a 4-year old, don’t you think?
When we were nearing the end of the game, Katie asked John if he would like to go for ice cream. So, after mini golf we headed up to the food court and went to McDonald’s. The kids each ate an entire ice cream cone by themselves…at a pretty good clip! After that, we headed for a twirl on the merry go round. The kids didn’t want to sit on a horse or other animal, but together on a bench. They both had a great time, and, in turn, it was great watching them both have fun together too!
Katie did great at school on this week. Her teacher did say that she “missed Mommy” during her time there and spent some time sitting with the teacher, she stayed the whole time. I’m not sure if Katie really did miss me or was really just a little tired and didn’t want to say that. Regardless, she was excited to be back to the usual routine, see her school friends, and stay busy.
Both Katie and Christian are very excited as less than a week after we planted some seeds, we already have plants poking up through the dirt! We’ve been watering them and watching them daily and suddenly we see green. Katie takes each cup and “pets” the top of each plant in the cup. I’m sure that contact from an admiring friend helps them grow as much as talking to them!
I’m going to hold off on posting any photos of Katie in the flower girl dress. You will all have to wait until after the wedding which is in April. : ) We don’t want to spoil the surprise for anyone attending the wedding or part of the wedding.
I’ll end here with a few recent conversations with Katie. Today we saw a school bus parked in the driveway of a house in the middle of the day. Katie asked what the bus was doing there.
Since I have seen this bus parked there before, I told her, “I think that the person who drives that school bus lives at that house and parks the bus in their driveway.”
Katie exclaimed, “Noooooo!”
I asked, “What do you mean ‘no?’”
She said, “People who drive buses don’t live in houses. They live in schools. Like the teachers.”
I started explaining to her that this wasn’t the case, but she sounded like she didn’t believe me…..
~~~~~~~
During storytime she had this conversation with Kevin. (Bear is her well-loved stuffed “Green Bear” who goes everywhere. The recorder is her musical instrument, a recorder that she has.)
Katie: “Bear and I did bring our recorders to the zoo.”
Kevin: “Did you play for the animals?”
Katie: “Yes, we played for each of the animals.”
Kevin: “Did the animals dance?”
Katie: “Well, the rhinos didn’t dance.”
Kevin: “Did the elephants sing along with their trunks?”
Katie: “Yes, they went tooot!” (raised her arm like an elephant’s trunk)
“But Bear didn’t see the tigers.”
“When we came back from the zoo, we had our recorders.”
“Next week Bear and I and Bear’s friend will bring our recorders to the zoo.”
“Bear has a red one and his friend has a blue one. Dad, what color is mine?”
Kevin: “Yours is white.”
Katie: “Mine is white.”
Kevin: “Who is Bear’s friend?”
Katie: “Oh, John or Ellie.”
Kevin: “Do they have recorders.”
Katie: “Yes, I think so.”
Katie has a very vivid imagination as you can see. She routinely shares these types of exchanges late in the day. I’m not sure if she’s tired and relaxing or her mind is whirring with all sorts of stories she’s concocted and can’t wait to tell them to her captive audience, Kevin or me.
I also have to mention that we have a brand new site to help us raise funds for Light the Night this year. Visit our magazine site to renew subscriptions, give gifts, or find new magazines to enjoy. 40 percent of each purchase price is donated to Katie’s Cheerleaders Light the Night team to benefit the Leukemia & Lymphoma Society. As you shop the site calculates exactly how much our team will get credit! Be sure to pass along this link to all of your friends and family as well and encourage them to renew and subscribe using our site:
http://www.magfundraising.com/Light_the_Night_-_Leukemia_and_Lymphoma_Society
And, as always, thanks for your continued support in our fundraising efforts to find a cure for blood cancers. You might recall that we are working to raise $13,000 in 2006 for the Leukemia & Lymphoma Society!
Thanks for checking in on Katie. Her home nurse visit is scheduled for Friday, March 17 to check her blood counts, especially to keep an eye on her liver numbers now that she’s restarted chemo.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months exactly
Friday, March 10, 2006 11:50 PM CST
Thanks for your continued concern for Katie! She’s doing well and had a quick and uneventful clinic visit today. She didn’t get blood counts again as she got them yesterday and she just got the IV chemo (vincristine) which was delayed from last week.
She also got a very thorough exam from several doctors and a medical student. She did great though and tolerated the parade of people streaming through to see her. Her liver is back to normal size and her spleen is still a little enlarged, but not nearly as much as before.
Her height and weight were sort of “golden” today. She was 40 1/2 pounds and 40 1/2 inches tall. I would expect that your height and weight aren’t the same very often in your life. : )
We always expect Katie to be exhausted after the long drive to clinic and back, not to mention the chemo she gets and all the stressful situations she deals with – triage to get her height, weight, stats; exams or some questions by various doctors, some she is familiar with and often a new one or student; exams and questions by nurses; waiting around in a place she would prefer not to be; and getting her port accessed and de-accessed.
Alas, after lunch she wanted to go out and I unearthed her bicycle, helmet, gloves, knee pads and elbow pads. She wanted the works and got them all on herself except for clipping the helmet. Christian also insisted on wearing his helmet since Katie had hers on. I was afraid that the helmets might not fit since they’ve both grown over the winter. Miraculously, they did, but their respective bike and trike seem way too small for both of them.
After being dressed to the nines for safety, Katie proceeded to pedal away at a good clip. I had to have her stop quite a bit and wait up for Christian as he was more content to slowly push his trike along and study the leaves, grass, twigs, and whatever was lying on the sidewalk/lawns/driveways. She was very patient waiting and we finally had to cut the trip short due to Christian’s constant dawdling. We cut through our park and I carried/dragged the bike and trike while the kids held hands together through the park. It was really cute – them holding hands, not me dragging the wheeled vehicles.
They then played out in the yard for a good long time. We managed to bring out a bunch of toys that haven’t been played with since the last mild weather was here…in November. They had a blast.
The funniest episode was when Christian found a large v-shaped twig lying in the grass that we had stuck in the head of the snowman (it was for hair or antlers I guess) we built last weekend. Right in front of this twig was a big layer of leaves, about the length of the snowman. The leaf silhouette on the grass actually looked like the shadow of the snowman and Christian held up the big twig and asked me, “Snow?” He misses the snowman!
None of us really miss the snow that much. It was much more pleasant to be outside today without hats and gloves and snow pants. And, it was nice to see the sun.
After all this outdoor time, Christian went down for a nap in no time. Katie, however, was buzzed. She couldn’t settle down and didn’t take a nap today. We are beginning to believe that the vincristine actually jazzes her up and she doesn’t feel the tiredness until about Sunday (two days after getting the IV chemo).
She restarted her nightly oral chemo tonight. She handled that pretty well and didn’t complain. The steroids started up tonight and that she did complain about that as they taste terrible. Katie will continue to get weekly blood counts for the foreseeable future. We want to make sure her liver numbers stay where they should be.
Today at clinic the doctor isn’t quite sure if this most recent liver issue was truly a second case of VOD, especially since it was so mild and resolved itself quite quickly. He is thinking that her liver may be sensitive (probably due to the earlier case of VOD last summer along with the nightly chemo she takes which can irritate the liver regardless) and reacted (over-reacted?) to a virus she picked up.
He also is interested in whether when she goes off treatment and gets a virus if her body is going to react the same way. ARGH! We never thought about that and certainly hope that is not the case! But, time will tell.
I do want to mention one thing to all of you who faithfully check in on Katie...and the rest of us. I don’t think I mentioned the “Notify List” section at the top of Katie’s home page. What it is, is quite simple. You sign up and every time I update Katie’s site, I send out a short e-mail note letting you know that I’ve put up a new entry in Katie’s journal.
I promise that I will never share, sell, give away or do anything with your e-mail address except send you a note that I’ve updated her site. You can also unsubscribe at any time from the list whenever you choose. And, it’s a totally free service and there are no strings attached. If you are interested in signing up, simply enter your e-mail address above and you’ll get an e-mail message to which you need to respond to confirm joining Katie’s Caring Bridge update list.
Oh, I must mention that the flower girl dress arrived today! It fits great and Katie loved it. She went and found a basket to carry while she wore it and was all smiles. Photos to come....
Thanks for stopping by to check in on Katie. She’s doing great so we hope to enjoy the warm weather here! Katie’s scheduled for a home nurse visit on Friday, March 17.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 4 days
Thursday, March 9, 2006 9:51 PM CST
Thanks for stopping by to check on Katie. She’s doing well.
She had a home nurse visit today to get her counts. Things look really good. Her white blood cell count is at 5.2, her hemoglobin is getting higher and is now at 10, her platelets reached over the magical 100 necessary to restart chemo and are at 131. And, last but not least, her ANC is a whopping 1783…despite having a mild cold this week. Her ANC is over the required 1000 to restart chemo too.
And, her liver numbers look good. The AST is at 40 and the ALT is at 46, both of which are slightly above normal range, but not by much. Her bilirubin is down to .9 and direct bilirubin to .2. So, it seems like her liver is getting back to normal once again. Yay! (And, I would like to think that the milk thistle that she takes daily helps her liver get back to its normal function level as well.)
On Friday, March 10, she’ll head into clinic for her monthly IV chemo (vincristine) and start her five days of steroids in the evening. She will also start up her 6mp and methotrexate at 50 percent dose. She’ll likely get weekly blood counts to make sure that her liver numbers aren’t dancing upward again and maybe she can get back up to 100 percent chemo before treatment ends in 66 short days. But, who is counting?
She’s feeling pretty good and eating, playing, sleeping, and acting just fine. Since her cold symptoms seemed mild to begin with (as well as Christian’s too), we decided to venture out of the house today and mingle with the public once again. We started out today full swing into a busy routine. We didn’t intend it, but it just happened that way.
First was Nurse Eileen’s visit, then we went to German class, ran home to meet our appointment with the tree guy (the kids got an unexpected treat of coloring pages from him), and then as the tree guy was leaving Katie’s playdate arrived. So…a very booked day, but the kids enjoyed it immensely. Katie didn’t start to slow down until near the end of her playdate, so I think she is feeling good.
Thanks for checking in on Katie! We appreciate all the thoughts and prayers on her behalf.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 5 days
Wednesday, March 8, 2006 10:17 AM CST
Thanks for checking in on Katie.
All continues to plug along here. Katie’s feeling better, but somehow, even with us not going anywhere or hanging out with anyone, both the kids have slight colds which started yesterday. ARGH! It isn’t slowing them down though so they are minor colds, thank goodness.
We’re keeping busy around here. The kids are very excited about today’s special project. We’re going to plant some veggie and flower seeds in small pots to watch them sprout here in the house. Then when the weather is warm enough, we’ll have some nice little plants to take care of outside too! It will give them something to check on every day…besides the cats and the fish who they also are very involved with!
With Katie’s cold, I’m not sure what her blood counts are going to look like tomorrow, but I’m not too confident that she will restart chemo on Friday. Hopefully my hunch will be wrong. Time will tell.
Thanks for thinking of Katie!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 6 days
Sunday, March 5, 2006 10:17 PM CST
Thanks for checking in on Katie. She continues to feel a lot better.
We had a quiet weekend. The snow today provided the perfect excuse to just lounge around home. The kids enjoyed going out in the snow after lunch and got a few sled rides in as well as building a giant (i.e., bigger than them) snowman. This could be the last snow of the season, so we enjoyed it fully. Katie lasted longer outside than Kevin or I expected, so we didn’t complain once she finally announced she was tired and wanted to go in.
She’s back to eating pretty well again. That should help her regain some stamina and also make her hemoglobin and other counts rise over the course of this week as well.
We’re keeping Katie home from school on Monday. With her currently energy level, we don’t think she could endure the 3 ½ hours on her own with the non-stop activity there. We are also a little concerned that her ANC (infection fighting ability) was only in the 300s on Friday and would cause her to pick up any little bug that floats near her. And, her platelets are still quite low to let her be banging around other kids right now. So, we’ll have a quiet Monday here at home. (We’re all getting quite tired of these quiet days. Once the weather gets good and Katie’s feeling better, we’re busting outta here!)
We’re hoping to have a few playdates this week if everyone on this end and the playmate end stays well. It will be good for Katie and Christian to have some play time with their friends!
I don’t think I mentioned it before, but Katie was asked to be a flower girl at our friends’ Sarah and Shawn’s wedding in April in Virginia. We have been reading a ton of books on being a flower girl, what a wedding entails, who everyone is there, what you wear, how you act, and so on. She is very excited to be a flower girl now!
Sarah’s mom, Auntie Carol, came to visit us a couple of weeks ago and we went dress shopping. We went to several bridal shops and a number of department stores in search of a dress. Katie accompanied us to a few stores and tried on a few dresses. She tells Kevin now every time we drive by one of those stores that “I went in there to look for a dress.” or “That’s where I tried on THREE dresses.”
Then she follows up with, “When am I going to get a flower girl dress?” The answer is now “very soon” as the big thing we did last night was order Katie’s flower girl dress. If you want to take a peek at it, you can see why Katie is so excited to be a flower girl.
We were reading a Bible story the other night about Joseph and the coat of many colors. At one point in the story I asked her if she had any special clothes. She thought for a moment and said, “Yes, my pretty new dress!” And, I asked her if that was the flower girl dress and she said yes! We were also talking about the dress last night when she was going to bed and she asked, “Is the parade tomorrow?” She calls the wedding a “parade.” And, in some ways, it is….
When Auntie Carol was here, we also took a trip into Chicago to show Auntie Carol the city. (Of course, it was the most frigid weekend, but we did get out of the car to go up in the Sears Tower.) Katie hadn’t been up in any of the tall buildings in Chicago since she was really little so she doesn’t remember being up that high or seeing a view of the city like she did. She announced while looking out the windows where she could see tons of buildings, all the cars buzzing, the trains whizzing, and the lake and river, “Mom, I like the city. We need to come to the city more often.”
She also, unfortunately, now thinks that pigeons are cute. The elevator ride up to the top of the Sears Tower has a cartoon running as you go up and down to amuse everyone. And, the cartoon is of two comedic pigeons. Christian also was amused by the pigeons, yelling "Poon" which is his strange word for "bird."
Christian could take or leave the views. He does have a dare devil streak in him as he would throw himself on the heating/cooling units that lined the walls along the windows to try to get “closer” to the window and the views. It made me nervous, but he enjoyed calling out “Auto” (car), “Fleugzeug” (airplane), “choo choo” or “Wasser” (river or lake) to show us everything he could see! He had a fun time running from window to window while I was in pursuit.
I have to mention a special program to raise funds for the Leukemia & Lymphoma Society that is in full swing right now in many public and private schools in Illinois -- and around the nation. It’s called Pennies for Patients and school kids are collecting spare change to support the mission to find cures for blood cancer and improve the lives of patients and their families.
I’ve posted a list of all the Illinois schools that are participating in Pennies for Patients. If you are in Illinois, please take a moment to check if there is a school in your town or nearby that is participating. With some of your spare change, you can support the Leukemia & Lymphoma Society and help a class work toward winning a special pizza party! Last year, more than 15,000 schools nationwide raised more than $14 million to help others through research and support services. In Illinois alone, schools helped raise over $300,000. Every cent is important as the Illinois chapter of the Leukemia & Lymphoma Society is supporting thirteen blood cancer research projects statewide.
If you know of a school interested in participating in Illinois, contact Emily Irrer at the Illinois Chapter of the Leukemia & Lymphoma Society. If you know of a school outside of Illinois interested in participating, visit the School & Youth web site to learn more or sign up your school.
The home nurse visit is still on for Thursday, March 9. If Katie’s counts hit the magical 1000 for ANC and 100 for platelets, she’ll head into clinic on Friday for her IV chemo. If her liver numbers are down far enough, she’ll also likely restart oral chemo at 50 Believe me, she has not missed taking nightly meds.
Thanks for stopping by for an update. We are hoping for a quiet week!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 9 days (Did anyone realize that I had the wrong number of days here? I just realized it’s even shorter than I had been posting! Hooray!)
Friday, March 3, 2006 2:48 PM CST
Thanks for thinking of Katie. She’s doing much, much better.
She had the home nurse visit today with Nurse Darlene and we had good news arrive not too long ago via phone and fax. Her hemoglobin is staying steady at 7.5 which means no transfusion. And, her platelets have risen to 28 (from 14 on Wednesday) which also means no transfusion. So, no crazed visit to the clinic this afternoon is necessary. We’re all very happy about that!!
Katie’s ANC (infection fighting number) is still low, at just 357. So this means we won’t be going anywhere or doing anything major this weekend. She’s too susceptible to pick up all those nasty bugs that everyone seems to have right now…end-of-season flu, cold, stomach flu, and whatever else icky, yucky stuff that is floating around out there.
Katie’s liver numbers are on the downswing and her bili is still high at 1.9, but the direct bilirubin is only 0.7. Her AST was 90 and ALT 82, so her liver is working to get back to normal. We’re glad her liver numbers continue on the downswing.
Her energy level is up though and she played all morning without much break. She is taking a nap now which isn’t unusual. The other thing that is a good sign is that she’s interested in eating more. She’s been eating very little lately, but continuing to gulp down water and milk and juice. Today at lunch she ate a good amount of food for the first time in over a week.
A lot of people have inquired as to how Katie has been off chemo a lot and how the end date for her treatment has not been extended despite all these treatment delays. I wanted to explain that the protocols (treatment regimen) that the kids are on allow for time off chemo. There are very, very few kids who go through chemotherapy for ALL and have no delays due to either low counts, adverse reactions, severe illnesses, or other complications.
So, in a way, there is “wiggle room” in the regimens that allow for these delays. And, because the doctors and researchers almost expect delays, no one we know has had more treatment time added on at the end, changing their off-treatment date.
Now that I say that, I’m sure that there are some exceptions. I just have not heard of any personally and most of the delays that I know kids have gone through have been relatively minor and usually during the long term maintenance phase (where Katie is) and not during the hard-hitting phases at the beginning. The medical professionals usually calculate the off-treatment date AFTER the hard-hitting phases at the beginning of treatment are complete. Delays during the beginning of treatment do delay moving to the next phases of treatment and ultimately can add to the total treatment duration.
The thing that worries all parents of kids on treatment is, “Is my child getting enough treatment to make leukemia stay away permanently?” Unfortunately, no one has a magical ball to tell us that answer, so we just hope and pray that the kids all get enough no matter what the length of their delay(s) are or what causes them.
Hope that makes sense and explains why we are still chugging full steam ahead toward May 14 as Katie’s off treatment date.
I had to share a phone conversation that Katie had in the hospital this week. My friend Renee called and we decided to let her son, John (age 4), chat with Katie.
Katie (taking the phone): “Hi John!”
John: “Hi Katie!”
Katie: (very short pause) “I’m just coloring, playing with toys.”
John: “I hope you feel better soon.”
Katie: “Yeah.”
(prompted by me) Katie: “I miss you.”
John: “I miss you too.”
Katie: “Bye.”
John: “Bye.”
I was just floored that she had such a smooth, simple 30-second conversation and described what she was doing without any long pause. I only prompted her the one line about “I miss you.” as she has missed all her friends, classes, school, play dates and play groups. We’ve been out of the loop for almost two weeks now!
Katie has a home nurse visit scheduled for Thursday, March 9. We will see if her ANC gets to 1,000 and her platelets get to 100 along with a further drop in her liver numbers. If all those criteria can be met, she’ll have a scheduled clinic visit on Friday, March 10 to get IV chemo and start a steroids pulse that was originally scheduled to occur today.
Thanks for faithfully checking in on Katie!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 11 days
Thursday, March 2, 2006 10:02 AM CST
Thanks for checking in on Katie! We got home yesterday about lunch time. (It only took 2 ½ hours for us to hear the word “discharge” to see the actual paperwork to let us go. For hospital time, this is FAST!)
Katie slept most of yesterday afternoon. She’s beat from this VOD stuff and the low hemoglobin doesn’t help her feel very energetic. In the evening she enjoyed the routine of reading books, watching a favorite show, and getting ready to sleep in her own bed, in her own room, with all her stuff surrounding her. Not to mention no pokes at midnight and 4 a.m. and 6 a.m.
Today she’s perked up a bit and ate a little breakfast. She was playing with Christian and buckled up one of her dollies in the stroller and took her for a stroll around the house a few times. It is good to see her up and about.
With her platelets so low, we don’t want her to get too active and bump herself.
With her hemoglobin so low, we don’t want her to use up every shred of energy she has.
With her ANC so low, we don’t want to go anywhere and have her pick up another bug.
So…she’s staying at home this morning with Oma while I take Christian to his German class. Poor Christian needs some activity and interaction with other kids and an outlet to burn off some excess energy. The German class will do him good.
The worst thing is that today is one of the German teacher’s last day. Erin has been Katie’s teacher since she was 13 months old, so I was hoping Katie would be able to say Aufwiedersehen (goodbye) in person. Instead, Christian will be there to give Erin a send-off hug and Katie created two multi-media cards (paint, stickers, markers, crayon, colored pencil, tape, and paper pictures) and recorded a little something for her on a recordable gift card for Erin. (How cool is Target to come up with recordable gift cards so you can say something and record it on a gift card to give to the recipient?!)
We are hoping for a quiet, uneventful day. Oma is leaving this afternoon so the kids will miss having her around. Katie has a home nurse visit scheduled for Friday, March 3 so we’ll see how her counts are doing. We’re hopeful that her liver counts continue to drop and her platelets rise along with her hemoglobin so we won’t have to make a fast trip into clinic for a transfusion on Friday.
Thanks for checking in on Katie and keeping her in your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 12 days
Wednesday, March 1, 2006 9:45 AM CST
Happy March! I’m not sure if it’s coming in like a lion or a lamb for us. If Katie started out the day in the hospital I’m saying lion, but if she’s also being discharged today, I’m saying lamb. So I have no idea really which it is. Either way, I hope the rest of the month rolls along smoothly!
The good news is that Katie’s being sprung today! Yay! We are very happy about that!! I had packed for a week and figured that was the minimum amount of time we’d be here based on her last episode with VOD. So, I’m very, very happy to be wrong!!
The so-so news is that her platelets dropped more to just 14. The good news is that her hemoglobin has gone up (as a result of the transfusion yesterday) and her white blood count remains at 1.1.
So…we are hopefully going to get out of here shortly. I don’t have other numbers as they haven’t given us the final blood count report and they chose not to do a liver panel today. She’s in her for liver issues, but because we’ve got a whopping two days of liver data, we can presume that the liver numbers are on their way down. Can you tell I’m not happy they decided to skip the liver panel today?
Oh, and before we go I have to go beg a doctor or resident or intern to feel Katie’s liver and spleen to make sure they aren’t more enlarged than on Monday. She’s been in here for almost 48 hours and only a couple of nurses have listened to her and checked her over, and only one resident listened to her this morning. No one has given her an all over exam. We’re in the hospital. Why are we here again?
I better stop venting and get us packed up. Thanks for checking in on Katie. I’ll update again when I learn something new. She is likely to have a home nurse visit or clinic visit later this week. And, she’s off chemo (again) for an unknown period of time now until her liver gets back to normal…again.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006): 2 months, 13 days
Tuesday, February 28, 2006 8:15 PM CST
Nothing major to report here. Katie got the red blood cell transfusion and didn’t have a reaction to it. (They monitored her vitals regularly while she was getting the transfusion over a four hour time span.) Her fever even stayed away all day, only to return at 6pm. She’s been tired all day, but then again, so have I.
We’ll see what her counts look like in the morning. Hopefully things will continue to improve. Thanks for checking in on Katie!
Tuesday, February 28, 2006 12:46 PM CST
Well, nothing like things just going along relatively well for the unplanned clinic visits to start…and then the unplanned hospital stay.
Katie had an unplanned clinic visit on Thursday, February 22, 2006 as she had a slight fever going to bed on that Wednesday night. That morning she still had the fever, so Kevin took her into clinic. Her liver levels were normal (2.1 bilirubin and 40 SGOT/AST and 37 SGPT/ALT), but her blood counts were on the low side – 1.3 white blood count, 9.2 hemoglobin, 39 platelets, and ANC of 611. And, her spleen was enlarged. No one seemed overly concerned with anything in particular and with all the bugs going around, her fever and enlarged spleen were blamed on “just a virus.”
So, she came home and continued to have a fever…all day Friday. She was really lethargic and hadn’t been eating much. She had, however, been sucking down tons of water and milk and juice. I had slight flashbacks to July 2005 when she had VOD and started with a fever out of no where, stopped eating, and drank tons. But, I had faith that this was “just a virus.” Her doctor told us back in July that “no one gets VOD twice.”
Saturday was pretty much a repeat of Friday in terms of the recurring fever and lethargy. However, she got a bit worked up crying right before dinner and then puked. So, when we thought things might be getting better, she throws up. But, she did sit down to dinner and ate quite a bit of pasta which we thought was a good sign.
More positive things continued. Sunday overnight into morning she stayed fever free for a long stretch and she even soaked her bed wet with sweat overnight. So, we thought, “Yay! The fever broke and is gone.” We were very hopeful…until about 10:30 am when the fever returned.
The upside was that on Sunday she was more active. She wanted to play, to get up, and do things other than read a book or watch TV. We were again hopeful that she was on the upswing…until right before dinner when she woke up from her nap, chugged a ton of water and then promptly threw up. The fevers continued, but they seemed to take longer to come back, didn’t rise as high as before, and dipped lower when she took Tylenol. 103 under the arm was the normal high pattern and back down to 100 under the arm with Tylenol was the low normal for her.
We had called the on-call oncologist over the weekend several times and she reassured us and said to keep watching her, giving her Tylenol and checking on her. She also implied that going into the ER was going to be a long wait…not to mention what horrid bugs might be hanging out in there to be picked up in addition to whatever Katie had. So, we remained at home and she seemed to be doing a lot better.
After the puking episode on Sunday, we asked the on-call onc if we should bring her in to clinic on Monday. The onc said it would be a good idea to see where her counts were so we know if she’s indeed over the worst of it. So, we figured it would be a quick trip to check her blood counts and make sure the spleen enlargement hadn’t changed. (We broke a cardinal rule – we didn’t pack a bag for Katie to stay in the hospital. If we had, it would have been our “insurance” to stay out of the hospital.)
Well, as luck would have it, her counts were really low (.08 white blood count, 7.5 hemoglobin (usually transfuse at 7), 29 platelets (usually transfuse at 10), and ANC (infection fighting number) was in the 400s). And the clincher that something more than “just a virus” was brewing was her liver numbers: (2.1 bilirubin with a conjugated bili of 1.5 and 158 SGOT/AST and 277 SGPT/ALT.) Normal bilirubin is .1 to 1.0 and normal conjugated bili is 0.0 to 0.3. Normal range for SGOT/AST is 8-37 and SGPT/ALT is 8-35. And, her spleen was enlarged still and this time the liver was also enlarged.
So…guess what they think it might be? VOD (veno-occlusive disease) or a major disruption of liver circulation. They scheduled her for an abdominal ultrasound that morning and I’m still waiting to see the transcribed report, but it is apparently a mild case of VOD. And, she may be past the worst of it already.
And, with the dropping blood counts, the rising liver counts, the ultrasound findings, enlarged liver and spleen, the low ANC, and the continuing fever, Katie won a ticket to the most expensive hotel.
After spending a long time in the clinic, they finally got a room and got settled. (Turns out that the average ER wait time this weekend for a room ranged from 15 to 40 hours!!!!!!!!!! I would have gone right back home if I found that out. Can you imagine sitting in the ER for 40 hours…with a sick child???)
We were lucky to be able to have Kevin’s mom to come stay with Christian so that I could go stay at the hospital and Kevin could return to work. Kevin stayed with Katie at the hospital until the evening. She was pretty active and alert yesterday which was good.
The evening went well until her fever rose, she took Tylenol that she declared “yucky” as it was cherry flavor (she likes grape) and it was some hideous amount (she only takes 1 ½ teaspoons at home). She drank a good amount of water after taking it and promptly puked. New nightgown, new pillow cases, and thankfully, Green Bear was spared. (How could I get him washed instantly for him to sleep with him?)
Then the nurse came in at midnight for vitals. Then they buffed the hall floors. Then some weird low flying aircraft zoomed overhead…a few times. Then the nurse came in again at 4am for vitals. Then again at 6am for blood.
To say I slept overnight would be giving “sleep” quite a generous term. Plus, the temperature in this place has got to be about 103 degrees…and dry. I fear that our lips are going to shrivel up and fall off our faces. My hands feel like paper. Maybe they have the heat setting at “incubator” temperature?
So…that’s where we are…starting Day #2.
The upside of all this today? Her liver counts today are better than on Monday. Her bilirubin is 1.9, conjugated is 1.5, the SGOT/AST 90 and the SGPT/ALT is 185. The other good news? Her white blood count rose to 1.1 today and her ANC is in the 600s which means she can fight infections better. The platelets went down to 24 which is a slight drop, but not a nose dive like in the summer. So, I consider it good news that they are holding somewhat steady, though they are still really, really low. (Normal platelet count is 150 to 450.)
The other good news is that the doctor thinks that we may be past the worst of it already. She may be able to go home tomorrow if she “remains stable.” Of course, no one tells you exactly what that means, but I guess if the fevers disappear, the hemoglobin doesn’t drop overnight, the white blood count continues to rise along with the ANC, the liver numbers continue to go down, and the platelets stay the same or only drop a bit again.
The bad news is that her hemoglobin continues to drop and is at 6.1 today. She is getting a red blood cell transfusion as I type. And, I have to remind all of you reading to please consider donating blood. It can help save a life!
The other news is that she continues to retain fluid and is swelling up a bit which means that her liver is still not working normally.
What else can I share? Oh, I just learned that there is a free pizza luncheon at 1pm today in the conference room. Free food for the parents? I better go see it with my own eyes and take a bit before it disappears.
And, I have to share a really cute comment Katie made last night. Nurse Paul had been her overnight nurse. Great guy and did all the vitals and all with a penlight so he wouldn’t disturb us too much. Well, he left after the 4 am vitals.
Katie says to me, “Mom?”
“Yes?” I respond.
She tells me at 4am, “That guy is really nice.” (She knew it was Nurse Paul, but I guess it was 4am…and she couldn’t remember his name…or the fact that he’s her nurse…and he was just “that guy.”)
I’m guessing that from that comment she really liked Nurse Paul. I’ll have to remember to request him for her!
Katie’s snoozing right now during the transfusion and I’ll update once I learn more. And, as any of you know from hospital stays…you don’t learn much very often.
Thanks for faithfully checking in on Katie and keeping her in your thoughts and prayers.
Love,
Amy, Kevin, Katarina, and Christian
COUNTDOWN TO OFF-TREATMENT (May 14, 2006—we just learned that the date is 5/14 and not 5/16 so we’ve shaved off a couple of days): 2 months, 14 days
Thursday, January 12, 2006 9:07 AM CDT
Thanks for stopping by to see how Katie is doing. Well, her stomach issue got better and then, exactly one week later on Tuesday afternoon, Christian appeared to pick up the same exact bug. Yuck. I’m sick of someone being sick! Fortunately, his bug was a one-time event (unlike Katie’s) and it looks like he’s back to 100 percent already. Yay for that!
But, alas, things cannot be calm around here. On Wednesday Katie was acting fine, but I noticed she felt a little warm and her cheeks were flush. I took her temp and it was over the magical 101. I called the nurse practitioner and she said either bring her in to the clinic on Wednesday or this morning—our choice. And, as you all know, if a child has a fever, it will progressively get higher and peak at about 2am when everyone is tired and groggy and the child will be miserable and whiney and cranky and not want to sleep. So, after little discussion, Kevin and I decided to take her in on Wednesday for an infamous unscheduled clinic visit.
Of course, when she was at clinic she barely had a fever. However, they did a blood count, liver panel, and took blood for cultures to see if there is a bacterial infection. They also gave her and IV antibiotic as a preventative. She was tired after this unplanned outing and her fever still kind of is lingering, but it’s not as high as it was and she seems to be feeling good. Her blood counts are all high (she just finished her last dose of steroids for this segment on Wednesday morning), but her liver numbers are out of the normal range now. The elevated liver number is not out of the ordinary as if she is fighting a viral infection, it can affect those numbers. We will hear if anything grows in the cultures, but since it's been over 12 hours, and haven't heard anything, it's unlikely to be a nasty bacteria at this point.
However, this fever now has canceled all our plans again. So, we’re once again home bound. Today is supposed to be gorgeous weather-wise, so we are going to try to get outside for a bit at least. (Who ever heard of 55 degrees and sun on January 12 in Chicago?!)
And, I must share a recent observation that Katie had. Last week, after getting out of the bath she was getting a glass of water while I got Christian out of the tub. She was looking in the mirror and exclaimed in surprise, "Where are my eyebrows?!" I said "What?" She said, "My eyebrows are gone!" I told her that they were there, but they were just wet and she couldn't see them until they dried. She said, "I'm going to draw new ones on."
Lastly, I must put in a plug for our Ebay auctions to raise money for The Leukemia & Lymphoma Society. Katie’s Cheerleaders has now posted it’s first $10 toward our 2006 goal of raising $13,000 this year. Visit our new 2006 Light the Night site!
Thanks again for checking in on Katie. I hope we have nothing further to report until Katie’s home nurse visit on Friday, January 20.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 4 months, 4 days
Monday, January 9, 2006 8:28 AM CDT
Thanks for checking in on Katie. She’s doing well. She had her scheduled clinic visit on Friday and all her blood counts look good and her liver levels, for the third week in a row, remained in the normal range. We are very happy about that! So, happy in fact, that we’re only going to get blood work done once (January 20) between this clinic visit and her next one which is scheduled for Friday, February 3, 2006.
The clinic visit was a short one and that was good as we had to take Christian along. Kevin was out of town on a business trip for half the week so Christian made the trip with us. He was very good for the long drive there and back and pretty good for the time we spent in the exam room.
The one thing that happened to start off the new year was that Katie got some stomach bug. We’re not sure what exactly it is as her counts don’t really reflect her fighting a virus, but she has had little appetite for over a week and some stomach issues all last week. We thought she’d bounce back quickly, but with getting IV chemo on Friday along with another med she takes weekly on Friday nights, and starting steroids all on top of the daily stuff she takes seems to have hit her hard. So, we didn’t do much last week or this weekend at all. And, Katie was really upset that Kevin was on a business trip Wednesday through Friday after being home so much between Christmas and New Year’s. It was a long week!
We’re hopeful to resume all our normal activities this week and Katie will get back to herself once the steroids end on Wednesday. Thanks for checking in on her!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 4 months, 7 days
Sunday, January 1, 2006 9:18 PM CDT
HAPPY NEW YEAR! 2006 is the year that Katie goes off treatment. The countdown is getting shorter!
Katie is doing great. She had blood counts and liver levels checked on December 29 and all is well. Her liver levels are still in the normal range. Still no explanation why they go up and down like a yo-yo, but no complaints here again.
Katie has a scheduled clinic visit on Friday, January 6, 2006.
Thanks for checking in on Katie!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 4 months, 15 days
Saturday, December 24, 2006 11:15 AM CDT
Thanks for checking in on Katie! Merry Christmas! We hope you have a wonderful holiday with your friends and family.
Katie had blood counts done on the 22nd and all looks good despite the fact that she had a cold and cough this week. We thought for sure her counts would reflect that, but they were fine. And, those crazy liver numbers are back in the normal range. It makes no sense, but we are not complaining.
Due to the cold and cough, we didn't see many friends this week or do much of anything. Katie felt fine through it all though and is still sticking with the potty training. Today is one week since she announced she was going to wear underwear and is doing GREAT! She is a pro at the entire process. What a great Christmas present to herself and to us! : )
Katie gets her counts checked again on the 29th. Thanks for checking in on Katie.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 4 months, 22 days
Sunday, December 18, 2005 4:50 PM CDT
Thanks for checking in on Katie. She’s doing great! She had a scheduled clinic visit on Friday, December 9, 2005 and all is well. Her blood counts looked good although they didn’t do liver counts that week. She had liver counts done on Friday the 16th here at home and they are elevated again, but not to the point where it affects her chemo dosage. She has another check of her counts on the 22nd and 29th here at home and then a scheduled clinic visit on January 6, 2006. Since she’s feeling and acting fine we all continue to plug along with getting ready for all the holiday festivities.
You may have noticed in some photos that Katie has bangs and layered lengths on the side now! One thing I forgot to share with you all is that Katie had her FIRST ever haircut on October 23, 2005! She’s gone a number of times with Christian for him to get his hair cut and we’ve talked about her getting hers done and she always would protest and say she didn’t want to get it cut. So…we went ahead and made an appointment to get her haircut at a local kid-friendly hair place. She sat in a little toy car, watched an Elmo video, and simply had absolutely no problem whatsoever getting her hair cut! She got bangs and we evened out some of the layers and she thought it was so cool. She is definitely all girl loving every moment of being primped and prettied up!
And, despite the regularity of getting haircuts, Christian continues to have fits during his. He refuses to sit in the toy cars and instead prefers to sit on Mama’s or Papa’s lap so that they, too, can be covered in tiny hair clippings of his. We all walk out of there all itchy even though two of the four of us haven’t had our hair cut!
The other big news that I forgot to share with all of you is that -- with your support -- Katie’s Cheerleaders, the team we created to raise money for the Light the Night Walk to support The Leukemia & Lymphoma Society, met our goal of raising $10,000 this year! In fact, we raised $10,030.17 in 2005! We were very excited to reach our goal and our team came in 4th in terms of total money raised for the Naperville, Illinois walk. In Naperville alone for the Light the Night Walk, $435,000 was raised.
We want to thank all of you for your donations, walking with us – in person or in spirit, and encouragement. In the two years we have participated in the walk, we have raised over $17,000. To make three years an even $30,000 raised, our goal for 2006 is to raise $13,000 and we know we can do it with your support. Stay tuned for details on our new fundraising ideas. And, remember it’s never too late to support the mission of The Leukemia & Lymphoma Society. You can always donate at the Leukemia & Lymphoma Society website or visit Katie’s Cheerleaders site.
The other huge news here is that the magical potty training switched appears to have been triggered. I almost hate to even mention this for fear of jinxing it. We’ve been discussing for MONTHS (okay, over a year, but I can’t really say YEARS since Katie is only 3) the whole potty and underpants topic with Katie. I had dreams of her being potty trained EONS ago, but she’s adamantly refused to wear underpants. She would occasionally use the potty successfully, but her interest would wane. One visit here, three days nothing, two visits another day, two weeks nothing. Yesterday, for the first time, she went for almost the entire day in training pants (that she pulled out of the drawer herself and asked to wear) and ran to the potty for many successful uses. At the end of the day we rewarded her with a small toy (in addition to each sticker that she gets for each successful potty trip) and she was so excited! Today is the same in terms of her success. We are hopeful that this pattern can continue. We know it’s going to be a harder task to get her trained during steroids weeks each month as the steroids cause her to drink and have to go a LOT more, but we are hopeful she can handle it. She did make one realization today: “I’m not going to drink a lot of water.” We asked, “Why?” She said, “Then I have to go potty a lot.” Well, we hope we can still encourage her to drink lots of water despite the fact that she needs to visit the bathroom much more. I would love for Santa to bring me a potty trained little girl and, as a result, a cheaper monthly diaper bill!
On another topic completely, Christmas will be busy as the kids have a stack o’ gifts to open that we are sure is going to take them a week to do. (They want to play with each item as soon as it’s opened.) And, weather permitting, we have Oma, Oma Carole, Oma-Oma Violet and hopefully some other friends and family visiting for the holidays. Kevin will be able to be home a bit more during the holidays, so the kids are going to love the extra Papa time too!
The snow here is already getting old. It’s not officially winter yet and Katie asked last week, “When is the snow going to go away so I can play in the grass?” Argh, it’s going to be a long, long winter!
I also want to mention that I have updated the photos here on the Caring Bridge page and also on our personal page. Consider the new smiles a holiday gift to you for your faithful concern for Katie and our family throughout the year. We are glad you take the time to visit!
We wish you a Christmas, Hanukkah, New Year and holiday season filled with peace, hope, love and lots of joy!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 4 months, 28 days
Thursday, December 8, 2005 9:43 AM CDT
Thanks for faithfully checking in on Katie. She's doing great. The past few months have been a whirlwind of normal, fun fall and holiday activity. It continues as we get closer to Christmas....
Katie's been on 100 percent chemo for several weeks now. She's been handling it fine and her liver numbers go up and then go down and then stay high and then drop a little. There is no pattern to it and fortunately, the levels have not risen high enough where her chemo would have to be adjusted.
Throughout all this, Katie is her usual babbling, bouncing, active three-year old.
I'll leave you with some recent conversations that Katie has had with us.
Looking at the three wise men in the nativity under the Christmas tree, this year Katie thinks that they should bring baby Jesus "a lamp, a TV, and placemats." Guess the wisemen can go to Target and do their shopping in one trip, eh?
***
Being asked about this new yogurt she didn’t eat, “Normally when I try things, I don’t like it.” At least she's honest!
***
Katie: "Mom, what color is this?" (Looking at a tiny Frosty we got celebrating Wendy’s 36th anniversary when we went through the drive-thru.)
Amy: "It’s brown. It’s chocolate. Kind of brown."
Katie: "Mommm, it’s not brown."
Amy: "Yes, it’s like a light brown."
Katie: "It’s not brown. AHA! It’s like an elephant. It’s elephant colored!" (Very proud of herself.)
***
I was reading Katie a book on chickens and when it said that girl chickens are hens and boy chickens are roosters. Katie announced, “I am a hen and Christian is a rooster.”
***
Katie is sitting at the dinner table. She lifts up her foot to the side and announces, “My sockie!”
She then pauses and looks at foot.
Says in a sing-song voice, “It’s too tightie!”
***
Thanks for the thoughts and prayers for Katie and all of us!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 5 months, 8 days
Thursday, October 6, 2005 9:43 AM CDT
Thanks for checking in on Katie. She’s doing well and feeling great.
The big thing that we did this past weekend was the first overnight trip of 2005! We finally made it out of town successfully…it only took us until October! And, where did we go? To Champaign, IL to visit Oma! It was a fun weekend and we got to see some other family and friends too. Katie and Christian had a blast and were zonked from the change of scenery and activity.
We continue our busy schedule to keep the kids occupied and happy. Katie has a scheduled home nurse visit on Friday, October 8 to check her counts. We are hopeful that they will be good so she can remain on 75 percent chemo.
This weekend will be a busy one as our friends Alice & Doug will be in town—with their two girls who are the same as Katie and Christian. We are hoping to do a little sightseeing including seeing Doug cross the finish line of the Chicago Marathon as he competes to qualify for the Boston Marathon!
And, you might have noticed that we are closing in on the 20,000th visitor to Katie’s site. If you are visitor number 20,000 please sign the guestbook and let us know. Katie has a special painting waiting just for you!
Thanks for keeping Katie in your thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 7 months, 10 days
Friday, September 30, 2005 11:22 PM CDT
Thanks for checking in on Katie. She’s doing great. She is feeling fine and busy as ever. We are very glad for that!
She had blood counts done a week ago on Friday, September 23 with Nurse Mary. Katie hadn’t seen Nurse Mary in a long time, but they played beach ball catch for a while and Katie was really excited to see Nurse Mary too! It was hard to really know if her blood counts are at good levels as the effects from the steroids were still in her system and all her numbers were slightly elevated as a result. However, her liver numbers are inching downward and more normal. We are thinking that this may be from the milk thistle (one capsule dissolved in water every other day) we are giving Katie. We had several people recommend it to help liver function, I read up on it, and Katie’s oncologist gave the stamp of approval. In fact, a clinical trial is in the works to see if milk thistle does indeed improve liver function in light of being on chemotherapy. We would like to believe that it does and time will tell. Katie’s been great about taking the milk thistle, provided that Daddy takes a small sip of it first.
Today Katie had blood taken again with Nurse Joe. Katie had to show Nurse Joe her latest favorite activity -- stamping. Her counts are decent and her ANC is just over 1,000. Her liver numbers are in the normal range and we’re happy for that. Since her counts are good, her oncologist is raising her chemo dosage to 75 percent. She had been on 50 percent chemo now for two weeks. We’ll see how her counts handle being on 75 percent when the home nurse comes next Friday, October 7 for blood work again.
Ah, yes, The Light the Night Walk. You can see photos here. It was wonderful! Katie was very eager to go and felt great! However, it was pretty grey and rainy the entire Thursday (September 23) of the walk. We were crossing our fingers and praying for the rain to hold off or let up during the festivities that evening. Just in case, we packed umbrellas, a tarp for the stroller, and a load of garbage bags to give to everyone as emergency “raincoats.” We got to the Naperville Riverwalk at about 5pm, set up our “station” which consisted of two picnic benches parked under a tree, and started meeting up with our team mates shortly after. We all ate a little bit (free food courtesy of various generous sponsors) as team mates collected their t-shirts, signed Katie’s Cheerleaders banner, and just hung out.
Katie had a blast. She ate a ton, she danced with her friends, she proudly carried her white survivor balloon (and a red supporter balloon for good measure) and had a great time. Christian also had a wonderful time that night and caused the sudden, loud demise of three red balloons before we reigned him in.
It seemed to get dark very quickly due to the overcast sky, but we collected all our team mates (33 this year!) and headed to the starting point for the walk right at 7pm. We had two banners to carry this year – one from last year since we raised over $1,000 by the start of the walk and one from this year since we raised over $1,000 by the start of the walk. And, I must mention that we, as a team, have raised $7,469 for The Leukemia & Lymphoma Society as of the day of the walk! We are closing in on our goal of $10,000 and donations continue to come in.
The actual walk along the Riverwalk this year seemed to move much faster. We’re not sure if it was because we started walking earlier or everyone was walking faster to beat the rain. But, as we approached the finish line, it started sprinkling. Everyone hurriedly said goodbye and hustled to their cars. As we got into the car and started out for home, the rain started coming down heavier. We were so lucky to have dry weather for the walk!
And, what was Katie’s comment as we headed home that night? “I want to do this again tomorrow!” Can you believe that? We know she had a wonderful time!
Just because the walk is over doesn’t mean we aren’t still fundraising. Donations continue to come in each day for The Leukemia & Lymphoma Society. You can still donate at Katie’s Cheerleaders team site until the end of November. And, thinking of the big picture, I believe we will be fundraising for The Leukemia & Lymphoma Society until a cure for all blood cancers is found. When we accomplish that huge goal I will move my support and energy to another cause and, unfortunately, there are way too many serious health conditions that are in need of support to find a cure.
You can still donate old, unwanted cell phones and used ink jet and toner printer cartridges. You can also donate items of value that we’ll list to sell on Ebay. So, if time got the best of you, don’t despair, there are still plenty of ways to help and plenty of time too!
Thank you for faithfully keeping Katie in your thoughts and prayers. She is doing wonderfully! Her next scheduled clinic visit is Friday, October 14. She will have another home nurse visit on Friday, October 7 to check blood counts.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 7 months, 17 days
Tuesday, September 20. 2005 9:04 PM CDT
Katie’s doing fine. She’s acting like a normal 3-year old. In fact, there are long stretches where she just won’t stop talking. Blah, blah, blah, blah, blah, blah, blah. We wonder if she ever gets tired of all the talk! We do! We think she’s squashing Christian’s motivation to start using more words. She tells us what Christian wants and he just sits idly by waiting for us to fulfill the request he’s telepathically given to his sister! Strangely enough, she is usually right about his needs too.
Alas, we have two special requests. One, pray that we don’t have rain Thursday, September 22, 2005. That is the night for The Light the Night walk to benefit The Leukemia & Lymphoma Society. It can rain early in the day and say after 9:30pm, but we need it to be precipitation-free for the walk. We can handle shorts or jackets or sweaters or scarves, sandals or boots or whatever. We just don’t want it to rain on our parade, literally! Our expected team turn out is about 40 people this year. We will be carrying two banners and lots of lighted balloons!
Second, I haven’t mentioned it this month yet and I would gather that you probably didn’t realize that September is Childhood Cancer Awareness Month. The American Cancer Society states that almost 10,000 children will be diagnosed with cancer this year and for every one of five, there are no good treatment options. Help raise awareness of Childhood Cancer. Where can you start? Visit Chili’s Create-A-Pepper website and create a pepper to fight childhood cancer. You can buy a cool t-shirt there too. And, don’t forget to visit your local Chili’s restaurant on Monday, September 26, 2005. All profits during that day go to St. Jude Children’s Research Hospital. Have a meal and donate to a good cause! Lastly, you can bid on a celebrity signed and designed Create-A-Pepper on Ebay. Have fun looking at various celebrity’s creativity even if you don’t bid on anything! All proceeds from the Ebay auctions go to St. Jude Research Hospital.
Katie has a home nurse visit scheduled for Friday, September 23, 2005, the day after the walk. Hopefully she will be up for an early morning visit after partying out late during the walk!
Thanks for checking in on Katie!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 7 months and 27 days
Friday, September 16, 2005 6:17 PM CDT
Thank you for checking in on Katie. She’s feeling fine. She had her scheduled clinic visit today.
Her counts are WBC (white blood count) up to 2.3 (from 1.7) which is better. Her HGB (hemoglobin) is a tad bit down to 10.9 (from 11.0). Her platelets are doing fine and are up to 270 from 196 on Tuesday. And, her ANC (infection fighting indicator) has risen slightly to 640 from the 425 it was on Tuesday.
With her ANC over 500, she can get back on chemo at 50 percent. She got her IV chemo today at clinic and started steroids tonight. The IV chemo and steroid doses don’t change no matter what her counts are so she (and we) get the full effect of both of those drugs this week.
Katie’s liver levels are still on the rise with the SGOT/AST going to 77 (from 55 on Tuesday) and the SGPT/ALT rising to 126 (from 78 on Tuesday). Both numbers are out of the normal range, but her doctor is unconcerned as her bilirubin is only 1.6 with the direct bilirubin being only .3. (For all of you uninitiated reading out there with not much experience with all these counts, I am giving lots of details in the hopes that someone reading might have some expertise to help us interpret the numbers better.)
So…with Katie going back on chemo tonight we are concerned that her liver numbers will continue to rise as the drugs start up again. I guess we’re just typical worried parents, but I am not looking forward to this next week and seeing how Katie (and her liver) react to being back on chemo.
We are hopeful that she will feel good enough to join us for The Light the Night Walk on Thursday evening. We are hoping for a great turnout and good weather too.
Katie has a home nurse visit scheduled for Friday, September 23 to check her counts. Please keep her in your prayers this week.
Love,
Amy, Kevin, Katarina & Christian
Tuesday, September 13, 2005 10:38 PM CDT
Thanks for checking in on Katie. Things are going well, but Katie’s counts aren’t where we would like them to be.
Friday, September 9, Katie had her favorite home nurse (Nurse Joe) come to do blood counts and a liver panel. Her white blood count is low (1.8) and her ANC (infection fighting number) was just 756. (It’s best when this number is above 1,000.) And, her liver numbers (AST and ALT) have risen slightly from a week ago. Mind you, Katie’s only been on 75 percent of her dose of chemo for a week and before that on 50 percent of her dose of chemo for two weeks.
So…we were a bit nervous to just wait until Katie’s next scheduled clinic visit on Friday, September 16 and asked to get counts done again at home.
Today, Tuesday, September 13 Nurse Joe arrived again to get blood counts and a liver panel. The numbers came back and her ANC has dropped again to just 425, so she’s off all chemo again. Her liver numbers (AST and ALT) rose since Friday as well.
So…she will go into clinic on Friday and we’ll see what her counts are doing. She needs to have an ANC of 750 and a platelet count of 75 (she’s at almost 200 right now) to restart chemo. Hopefully her liver numbers will go down as well with a break in chemo. It may be that she can only handle a 50 percent dosage anymore. We hope to find out soon so we can get off this roller coaster ride…for her sake and ours!
She’s doing well otherwise. She did attend her German class by herself on Thursday of last week. It was bit rough going, but when it was over she declared, “I had viel Spass!” Or, “I had a lot of fun!” So, the transition to the Kids’ Only class is hopefully complete.
She went to her school class on Monday and despite shedding a few tears when we entered her new classroom, she had a great time there. She is eager to return now that she knows the new routine, new teachers, and her new room.
Today we went to the local farm zoo and had fun greeting all the kids’ animal friends there. We didn’t know at the time that Katie’s ANC was so low or I probably would have kept the kids home today!
We are, however, wiping the rest of the weeks’ events clear off the calendar in order to keep Katie away from any extra bugs. The last thing she needs now is a virus to knock her counts lower.
Just a reminder that The Light the Night Walk is just a little over a week away on Thursday, September 22. We are hopeful that Katie will feel up to go on the walk and we can all gather there to meet up with all our teammates! Combining total with all our teammates’ contributions, we are nearing the $7,000 mark in terms of total money collected. Thank you to everyone for their generous support of Katie’s Cheerleaders! And please remember that even though the walk is on September 22, we will continue collecting funds for The Leukemia & Lymphoma Society as the need for patient and family services and a cure for blood cancer continues.
And, thinking of all the displaced people from Hurricane Katrina, please remember that there are many people who are in need of continued cancer treatment. As a result, The Leukemia & Lymphoma Society will be earmarking a half-million dollars of the monies collected nationally during all Light the Night walks to get blood cancer treatment centers and patient support services in place for those in need. Please consider this important need as you consider donating to aid victims of the hurricane. Please take a moment to read The Leukemia & Lymphoma Society’s statement on their proposed aid package.
Thank you again for all the continued thoughts and prayers for Katie.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 8 months, 3 days
Wednesday, September 7, 2005 10:55 PM CDT
Thanks for faithfully checking in on Katie. She’s doing great. She’s boisterous, obstinate, energetic, loud, and wild. Typical 3 year old.... : )
She handled the steroids after the August 19 clinic visit relatively well. We got through the five days with the usual tantrums and obstinacy. It seemed like the steroids hit her a bit harder this time, but I think we say that every time as we forget what it’s like since it’s four weeks between doses and this time it was nearly eight weeks so we really forgot what it’s like! And, it’s hard to figure out if “I want cheese.”/“I don’t want cheese.” and “I want the blue shirt.”/“I want the pink shirt.” and “I will play with that toy.”/“I don’t want that toy.” all coming out in the same couple of minutes in a string is all just 3 year old attitude or just steroids or a mean combination of both.
She handled two weeks on 50 percent of oral chemo at home just well and last Friday, September 2 she had a home nurse (Nurse Eileen) come on Friday to draw blood to get blood counts and liver levels. All her numbers are looking good and we hope that she can stay at this new normal and have her liver remain functioning normally as well.
Because her numbers were good on Friday, she moved up to a 75 percent dose of oral chemo at home. She’s been doing just fine with it this week and will have another home nurse come this Friday, September 9 to check her counts again. Her next scheduled clinic visit is Friday, September 16. If her counts are good at the clinic visit, she will go to 100f oral chemo and hopefully be able to stay there.
In between all this, we’ve been getting back on track enjoying summer and getting together with friends. Katie and Christian have been to the “big zoo” at least 3 times in the past three weeks. Brookfield Zoo is the “big zoo” and for some reason, Katie’s been calling it “Hookfield Zoo.” Whatever. It’s the zoo that has the rhinos, elephants, and tapirs and she doesn’t let us forget that.
She and Christian have been to the “farm zoo” or “little zoo” at least as many times in the past three weeks as well. They enjoy running around this local farm zoo to check on all their friends there. The bunnies, pigs, and horses are high on their list of friends there.
We’ve also continued to get together with all Katie’s and Christian’s friends for playdates and lunches and fun.
Katie starts her “Kids Only” German class on Thursday, September 8. We hope she can finally stay in the class by herself as it’s geared for kids ages 3 to 5 and she is ready for the more interesting activities they do in the older class than the class Christian attends.
Katie also starts “school” on Monday, September 12. School is a once a week, 3 ½ hour program at a local church where they have a structured day including lunch. She loved it last year and she is again looking forward to it this year. While Katie is in school, I take Christian to a mini-gym class to let him run around to his heart’s content.
And, this time of year is quite busy for us as we gear up for The Light the Night walk to benefit The Leukemia & Lymphoma Society. As you can see from the updated intro under Katie’s photo, there are LOTS of ways that you, one single person, can help. Thank you to all of you who have contributed in any and every way to help fight blood cancer. From giving us old cell phones for recycling to donating funds to The Leukemia & Lymphoma Society to sending up prayers for Katie, it all counts. And, we appreciate everyone’s efforts to raise awareness for childhood cancer in the hopes that we can either learn how to prevent childhood cancer, create cures that cure 100f all kids with all types of cancer, or eliminate cancer entirely.
I’ve updated our totals for Light the Night Walk at the end of this message. Please, if you can, help us reach our optimistic goal of $10,000. We are getting there, but we need your help! And, we will be fundraising through the end of 2005 so even though the walk is September 22, we won’t stop our efforts to raise funds.
If you’d like to walk with us on September 22 at Naperville’s Riverwalk, please register. Register for the Naperville, IL walk and choose Katie’s Cheerleaders as your team in the drop down menu. Register so that The Leukemia & Lymphoma Society will bring enough illuminated balloons to the walk and generous sponsors will bring enough food to feed all the walkers! There is no obligation to fundraise in order to walk with us and we’d love to have you walk with our team! The more the merrier!
Please read about our phone and ink jet/toner cartridge recycling efforts . Our Katie’s Cheerleaders team member, Deb, was featured in her local newspaper highlighting her efforts to enlist local businesses to put up phone and ink jet/toner cartridge recycling boxes and postage-paid envelope dispensers. If your company is interested in collecting phones and cartridges or being a drop off location, please let us know!
Don’t forget to see what we are selling on Ebay. 100 percent of the final sales price goes directly to The Leukemia & Lymphoma Society. If you have items of value you’d like to donate that we can sell, let us know too!
We’re also selling wristbands and magnets to raise awareness. Wear the wristbands or put a magnet on your car to show support for The Leukemia & Lymphoma Society.
And, lastly, as a reward for getting through this long update, see new photos of the kids on our website.
Thanks for checking in on Katie. We appreciate all the thoughts and prayers for her!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 8 months and 9 days
Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
Total cell phones collected as of 7/23/05: 101
Total ink cartridges collected as of 7/23/05: 106
Total Relentless wristbands sold as of 7/23/05: 36
Total Relentless car magnets sold as of 7/23/05: 28
Number registered to join our team, Katie’s Cheerleaders as of 9/7/05: 40
Total amount raised as of 9/7/05: $4998 (50 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Friday, August 19, 2005 6:39 PM CDT
Yay, yay, yay! No need for a BMA! What a warped world to find a need to write a cheer for such a topic! : )
The good news is that Katie’s ANC rose to 1400 today so she didn’t need the BMA. Her other counts were good as well, so oral chemo can finally be resumed. She is only getting 50 percent of her regular dose though and having blood work done next week to check all her counts. And, the next scheduled clinic visit is in four weeks, on September 16. So…all the blood work done in between will be here at home with a home nurse.
She had a spinal tap today which was the one delayed for a month. Initial results were all clear, but final results won’t be available until Monday. She also got IV chemo today.
The five days of steroids starts today. ARGH! It’s been a while since she’s been on steroids, so who knows what we’re in store for.
Thanks for checking in on Katie! We appreciate all the thoughts and prayers for her.
Love,
Amy, Kevin, Katarina & Christian
Monday, August 15, 2005 2:39 PM CDT
Katie has been off chemo for 3 weeks now. Her counts on Friday at clinic were WBC 4.0, HGB 12.4 and platelets 199. These are all good numbers. However, her ANC or infection fighting indicator, was only 520. So, no starting up chemo on Friday. All indicators in her bloodwork predict this ANC to go up.... However, the week before her ANC was at about 800 so we were SURE that she'd be at 1,000 on Friday to restart chemo and we were wrong.
This Friday they will do counts and if her ANC is under 1,000 they will do a BMA (bone marrow aspirate) to just check everything to make sure all is okay. We really, really hope that her ANC is 1,000 or above so she doesn't have to undergo a BMA. And, they are planning to do the spinal tap and IV chemo and get her steroid pulse going no matter what her counts are next week.
This coming Friday, they are also going to do another ultrasound of her liver to see how it is looking. Her liver levels are all in the normal range now. Upon exam, her liver “feels” like it is back to normal, but the ultrasound will give a better picture, literally.
Katie enjoyed her belated birthday present last night at the Allstate Arena. She got to see the Wiggles LIVE! She was so excited and loved all of the hour long program. She got a Dorothy the Dinosaur hat and babbled endelessly on the way home about the show and anything and everything she saw. We were very nervous about going to the show with her since her ANC is low and the high number of kids (that equals germs), but Kevin carried her in and out (no touching ANYTHING). He "purelled" her seat and the arm rests and the railing in front of them. And, the seats they had were on the aisle, no one in front of them and the five seats next to them were empty. There was no visible hacking, sneezing, listlessness among the people they sat in front of, so we hope that the enjoyment Katie had won't be paid back in and illness and/or low counts later.... And, oh, she LOVES the Wiggles!
Katie's next scheduled clinic visit is for Friday, August 19. I thought once a month clinic visits were tedious. I forgot how downright exhausting weekly ones are for all of us!
So, off we are on to another week where we all happily eat ice cream right before we go to bed since Katie isn't taking chemo each night.
Thanks for checking in and sending out positive thoughts and sending up prayers for Katie!
Love,
Amy, Kevin, Katarina & Christian
Thursday, August 11, 2005 10:54 PM CDT
Thanks for stopping by to chek on Katie. She continues to do really well and is feeling great. Our usual routine and schedule is returning once again and both she and Christian are happy for that!
Katie's scheduled clinic visit is tomorrow, Friday, August 12. If her counts are good, she is likely to restart chemo. She's been off all chemo for three weeks now. We still need to get quite a few questions answered about what the proposed plan is to get her back on track, so please send out some positive thoughts and prayers that we get the questions answered, ask the right questions, and that the right plan is chosen for her to have an uneventful next 9 months of treatment.
Thanks!
Amy, Kevin, Katarina & Christian
Friday, August 5, 2005 1:05 PM CDT
Thanks for checking in on Katie. We did ask to change Katie’s clinic visit from Monday to today and they were fine with the change. We really wanted to know what her ANC was and that would help us determine whether we need to be extra vigilant about crowds (germs) or avoid them all together.
The good news is that her ANC is up to 804. So, we will probably head out some this weekend after being cooped up at home all week. Her WBC rose more to 6.7, her hemoglobin is up to 13.1 and her platelets are rising still and are at 72. She feels a lot better and is continuing to eat very well, sleep relatively well (still getting up earlier than normal) and have more energy to simply play! : )
Two of her three liver levels are lower than they were on Tuesday. The bilirubin number is still above the normal range so we’re going to have to watch that.
She is looking much better too and the doctors and nurses commented on that. We have noticed though that she lost weight during this whole ordeal and suddenly her arms and legs look like sticks now that all the swelling form the liver issues has ended. Another unusual thing we have noticed is a weird redness that happens at various times during the day. It is like a big ring around her palm, on the soles of her feet, and sometimes on her cheeks. Of course, mentioning this to the doctors and nurses came up with nothing but a shrug. It doesn’t look like a rash, but it doesn’t look normal either. And, it comes and goes without any pattern to it. Anyone ever have experience with this during rising counts or a virus running its course?
She is scheduled for another clinic visit next Friday, August 12. If her ANC is 1000 and her platelets hit 100 and her liver levels are within the normal range, she is likely to get the spinal tap and IV chemo that was scheduled for July 29 that she had to skip. We will see if she meets the necessary levels to start that portion of treatment and will discuss when and how to restart her oral, at-home chemo. Truthfully, we are very nervous to restart chemo as we don’t want these liver issues to return. None of us want to replay the past few weeks again in any shape or form!
This week has been very normal in the sense that we’re all living under the same roof once again. And, Kevin’s started working just 10 minutes away which means he’s here when the kids get up in the morning. I think that they are confused by this and think it’s a continuous weekend or something. But, I am NOT complaining and we will get used to it without any problem, that is for sure!
Thanks for the continued thoughts and prayers for Katie. She’s recuperating quickly and getting back to being a busy little girl!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, August 2, 2005 11:19 PM CDT
Our little girl had a GREAT 3rd birthday today! Yes, she had a clinic visit, but that actually wasn’t too bad and she continues to recover from the liver issues.
We decided to not tell Katie about having to go to clinic until after we celebrated her birthday a little in the morning. So, she got up and she got a new Wiggles toy and got to see her elephant birthday cake, complete with three “droplets” of water being squirted from his trunk. (Photos to come, of course.)
Then we headed off to clinic. And, unprompted by me or even Katie, everyone was well aware it was her birthday today! It was so nice and she felt so special! She got a wonderful array of gifts there including a Play Doh set, a Baby Princess Cinderella doll, a purple stuffed bear, stickers, candy, a blanket, and a Winnie the Pooh balloon. I had to ask for bags (!) to carry everything back to the car when we left! But, our little princess was truly spoiled today at clinic and she enjoyed every minute of it and telling everyone she is 3.
The good news is that all her doctors and nurses think she looks a lot better. Her blood counts are doing better now. Her white blood count is 5.7 and her hemoglobin is doing well at 11.4. And, her platelets are finally recovering and Sunday they were 6 and today they were 26. I never thought that I’d be excited about a platelet count of 26 (which is still low), but the fact that it went up more than a little is very good news. Katie’s liver levels continue to fall back to where they should be and her liver enlargement is going down. The one number that is still bothersome is her ANC, or the infection fighting number. It’s only 114. With a count that low, we are continuing to lay low, very low as we don’t need her to pick up something else while recovering from this liver problem.
So…the idea of going out for dinner tonight wasn’t an option, so we just had dinner here at home and opened gifts before and after dinner. And after we sang Happy Birthday and she blew out the three candles on her cake, she then announced to us, “I need a knife.” We burst out laughing!
She wanted to cut her own piece of cake! And, with a plastic knife and just a little bit of help, she did cut a piece of cake for herself! I guess this means she’s no longer a baby when she cuts her own birthday cake. Katie directed Christian and Oma to get part of the trunk of the elephant and Papa and Mommy were to eat part of the butt (!) of the elephant. Hmmmm.
As she was eating the cake, she told us, “I am a stinker. I’m eating all the frosting.” Then she gave us a little evil grin. : )
Katie’s supposed to return to clinic on Monday, August 8. We’re not sure if we can go that long without knowing what her ANC is doing and might see if we can go to clinic on Friday or at least get blood counts that day.
Katie’s still off chemo and will likely remain off for at least another couple of weeks. She last took chemo on Thursday, July 21 so this is a long time to be off. Her doctors now need to work up a plan of how to get her back on chemo to make sure that the liver issues don’t return.
Thanks for checking in on Katie and keeping the thoughts and prayers coming her way. And, she loves all the birthday greetings and gifts and cards she’s gotten. They made her birthday a really special one!
Love,
Amy, Kevin, Katarina & Christian
The transfusion counts haven’t changed and we hope it can stay that way!
# of platelet transfusions 03/17/04 to 07/25/05: 1
# of red blood cell transfusions 03/17/04 to 07/25/05: 0
# of platelet transfusions 07/26/05 to today: 2
# of red blood cell transfusions 07/26/05 to today: 2
Sunday, July 31, 2005 7:19 PM CDT
Day #6 (Friday) in the hospital was better than most. Katie’s started eating again and had yogurt and cheerios and frosted flakes and banana for breakfast. She also was very, very happy to see Christian and her Papa come by on Friday. She stayed awake the entire time the four of us were together and ate some lunch as well. (Christian enjoyed her leftover pancakes for his lunch!) I took Christian home and we spent the evening together just playing. We both enjoyed it!
By the way, on Friday morning they finally did the second ultrasound on her liver. They had canceled her appointment on Thursday (after her going without eating for 4 ½ hours) to tell me that she couldn’t eat breakfast on Friday morning until after her 8:45am appointment. The second ultrasound didn’t show much more new information than Monday’s ultrasound.
Her counts are getting better. Friday’s WBC was 3.4, her hemoglobin (after Thursday’s transfusion) jumped to a nice 10.3. Her ANC was a big 470 which means chance of other infections setting in is less. Two of her three important liver levels went down and she looked more pink and less yellow yesterday. She also was feeling better and just more “with it.” Her platelets on Friday were just 5, still very low and well below the 20 that they usually do transfusions.
Day #7 (Saturday) in the hospital was good too. The doctor’s gave us the option to take Katie home, but with a platelet level of just 4, we just weren’t comfortable as if anything happened, our only option was to go through the ER on Saturday or Sunday to get seen. She was more active on Saturday and painted and did a few activities with Papa. Her WBC was 4.1 (going up), hemoglobin was 10.0 (a little lower than Friday) and her ANC was 322. All her liver levels continue to go lower than the previous day which is what we want to see.
Day #8 (Sunday/today!) Katie is HOME!!!!! Her platelets are still very low (at just 6), but she feels pretty good and we figure Monday we have the clinic hours to get seen if there is any issue. Her WBC rose again to 4.4, her hemoglobin was 10.6 (rose on its own, yay!) and her ANC was 352. Since her platelets are so low, she is finally getting petichiae (little red dots indicating broken blood vessels next to the skin) on her chest and waist. There are also a few other ones on her. When the platelet count starts to rise, these petichiae will disappear. She’s still quite puffy from retaining fluids this week too, but amazingly enough, her clothes fit.
Katie is very happy to be home and we just had dinner together. It was sooooo nice to all sit at a table together! We have to take Katie back to clinic on Tuesday for an exam and blood work. Not exactly how I pictured spending her birthday, but I’m hopeful that we can be in and out in the morning and the rest of the day will be hers to celebrate turning 3!!
Thanks for all the thoughts and prayers for Katie and for us. And a great big thank you to everyone for the calls, cards, packages and everything else. It means a lot to know everyone is thinking about Katie. We’re happy she’s home, but she still needs her platelet count to start rising on its own. And, after this liver issue resolves itself, we have the big job of figuring out how and when and with what to restart her chemo.
Love,
Amy, Kevin, Katarina & Christian
The transfusion counts haven’t changed and we hope it can stay that way!
# of platelet transfusions 03/17/04 to 07/25/05: 1
# of red blood cell transfusions 03/17/04 to 07/25/05: 0
# of platelet transfusions 07/26/05 to today: 2
# of red blood cell transfusions 07/26/05 to today: 2
Thursday, July 28, 2005 3:37 PM CDT
Day #6 in prison, er, the hospital. Katie is still feeling pretty miserable. She did sleep better last night though which was good for both of us. And, to my surprise, she stayed awake after the 6am blood drawn and ASKED FOR FOOD. After 12 veggie crackers, ¼ container of vanilla pudding, ¼ carton of milk, and ½ of a Kashi cheese cracker, she wanted to take a nap. I was extremely happy and willing to go hunt down whatever craving she had, even while wearing my pajamas.
She got up again about 9am and ate 12 individual cheerios (hey, I have to keep a log for the nutrionist here), 2 sips of milk, ½ of a wheat thin cracker, and 6 small bites of banana. (Thank you to my special angels for delivering to us some fruit; since Katie is neutropenic, they won’t let me order any type of fruit here, but I did have a banana saved out for a special craving by Katie!)
So…I’m hopeful we can avoid the NG tube for feeding. No one is especially eager to make her get the tube as there are potential issues of giving it to her with low platelets and her attitude in handling it and keeping it in anyway.
As for her counts, things look somewhat better in certain areas today. Her WBC is 3.4 (yay, it’s going up), her hemoglobin dropped to 6.1 and her platelets came in at a mere 8. Her ANC is back down again to 70. So…they are giving her a red blood cell transfusion as I type. This should help her mood and oxygen levels. It has been decided to hold off on giving another platelet transfusion right now as the platelets are likely to rush to the liver and not stay in her bloodstream to raise her platelet count. Hopefully soon the platelet count will slowly increase on its own indicating that the liver is healing itself. Regardless, her platelets still remain dangerously low.
The other good news is that her bilirubin level fell to 6.5 from a high of 7.3 yesterday. There is hope that yesterday’s 7.3 was the peak and the liver may be heading back to normal. I certainly hope that is the case and will be bummed if the level rises at all tomorrow; I want to see a lower number.
She is getting another liver ultrasound today to see if the VOD is progressing or showing any other signs. The GI doctors also suggested taking a look at her spleen and gallbladder to make sure they are normal. The downside to getting this ultrasound today is that she is ordered to NOT eat anything before the procedure and I am bummed as she’s been wanting to eat and I hate to deny her now that we’ve got her going again.
All her blood cultures continue to come back negative. She hasn’t had a fever since yesterday evening and I’m hopeful we can go 24 hours without a spike. If the fevers subside, she’ll also start feeling better.
She did paint for a little today which seemed to make her happy. We also watched Finding Nemo…again. And, she was visited by a special Santa today who gifted her with a Princess nightgown, Princess wand, lip gloss, notepad, and stickers. This same Santa gifted me with a manicure right here in the room. : ) Talk about an unexpected surprise! Her special Nurse Lori also brought her a little bear to keep Green Bear company. “Ruffles” the “new” bear is making herself at home.
And, those special angels who sent fruit also sent Katie balloons and colorful flowers. I put them at the foot of Katie’s bed so she’d see them right when she woke up. She certainly saw them right when she woke up and said, “Move them!” They were blocking the view of the TV; never mind that the TV wasn’t on at the moment, she was planning ahead. She also asked me about the balloons, “Which ones are for Christian?” She is always thinking of him first. I told her they were all for her, but she could share if she wanted to.
I forgot to mention that Kevin and Christian did make it here on Tuesday afternoon to visit for a bit. Christian made Katie smile the moment he came in! He also offered her a toy which was so sweet! Kevin and Christian are headed here on Friday sometime. Kevin will stay with Katie Friday night through Sunday and I’ll return on Sunday for the weekday overnights here. Kevin’s mom, Oma, is doing great with Christian at home. They are having a blast playing and he’s making sure she keeps up with Mr. Energy! Oma is going to go home on Friday and will probably return on Sunday so that Kevin can continue with work (their Naperville office opens on Monday, August 1—YAY!) and I can return to stay with Katie.
I am hoping really, really hard that Katie can go home to spend her 3rd birthday at home. Her birthday is August 2 and I was hoping that she’d have a nice birthday this year. Last year, her 2nd birthday wasn’t the greatest as she had lost all her hair the day before…. So, maybe we can hope that this year is a fun day…at home!
Thanks for checking in on Katie. We appreciate all the thoughts and prayers sent her way.
Love,
Amy, Kevin, Katarina & Christian
# of platelet transfusions 03/17/04 to 07/25/05: 1
# of red blood cell transfusions 03/17/04 to 07/25/05: 0
# of platelet transfusions 07/26/05 to today: 2
# of red blood cell transfusions 07/26/05 to today: 2
Wednesday, July 27, 2005 9:55 PM CDT
Another unremarkable, uninformative day #5 in the hospital. Katie is feeling just as blah as ever. I think that feeling is starting to spread. There isn’t much too look at around here though Katie is enjoying Finding Nemo (for the umpteenth time) and Winnie the Pooh in The Heffalump Movie. I’m starting to repeat quotes from both movies.
Katie’s counts are still pretty low: white blood count 1.8, hemoglobin 8.4, platelets 5 and ANC 216. The best thing about the counts? 1.8 WBC is higher than yesterday. Her hemoglobin jumped after her red blood cell transfusion yesterday and her ANC is slightly higher. However, her platelets are still dangerously low. She had a platelet transfusion yesterday and because of the VOD, all the platelets got used up/eaten by/trapped in the liver. So…they gave her another platelet transfusion today and did a platelet count one hour after the transfusion and the platelet count was just 11. This is still dangerously low.
All the blood cultures continue to come back negative. However, her fevers continue (spiking to 103 sometimes). She won’t eat anything so it looks like they are going to have to put a nasogastric tube in to give her nutrients. She’s still quite bloated and has a little bit of a yellow glow to her due to her bilirubin continuing to rise.
Today one of the nurses brought Katie a balloon. Katie saw it and the first thing she said was, “I have to show this to Christian.” She misses her brother a lot, as do I!
There is currently no end in sight of our stay here. There is no way she can get released anytime soon with the dangerously low platelets, low ANC, and continuing fevers.
Please take time out of your day to call your local blood bank or hospital and donate blood or platelets today. Thanks!
Thanks, as always, for checking in on Katie.
Love,
Amy, Kevin, Katarina & Christian
# of platelet transfusions 03/17/04 to 07/25/05: 1
# of red blood cell transfusions 03/17/04 to 07/25/05: 0
# of platelet transfusions 07/26/05 to today: 2
# of red blood cell transfusions 07/26/05 to today: 1
Tuesday, July 26, 2005 11:35 AM CDT
Day #4 in the hospital. Katie's doing okay. She tired and whiney and tired of being in the hospital. You can only take so much TV, movies, and books....
They did an ultrasound on her liver late yesterday and have determined that she has the early stages of veno-occlusive disease (VOD) brought on by the toxicity from the chemo she takes. They believe it is from the 6mp which she takes daily. (She has been off all chemo now since last Thursday.)
Her blood cultures and liver infection tests all have come back negative thus far. Her fevers still continue, but they are attributing that to the VOD.
She doesn't want to eat much, but, thankfully, is drinking lots of water and milk.
She also misses Christian...as I do. Kevin's mom is watching him at our house, but Kevin is likely to come visit today with him and we're looking forward to that.
Her blood counts continue to plummet and she is getting a platelet transfusion and red blood cell transfusion today. (WBC 1.0, HGB 6.2, and PLT 4) We were hopeful that she wouldn't have to have any transfusions as she's tolerated everything so well thus far and until now, only needed one platelet transfusion. But, that record is now broken....
And, for those of you who want to help, please think of kids like Katie and call your local blood donation center to donate blood or platelets. Please.
We'll let you know when we learn more.
Love,
Amy, Kevin, Katarina, and Christian
Monday, July 25, 2005 12:00 PM CDT
Day #3 in the hospital. Not much new to report. Katie still has a fever, is still neutropenic (low ANC), and her liver counts are all on the high side. The oncologist thinks she has an unknown virus in her liver; the infectious disease doctor says her liver issues are from the chemo drugs she takes causing toxicity in her liver. Choose your side and we’ll take a survey to see who is right. Regardless, they are doing numerous tests, but even if they find something, they can’t do much other than wait for the liver issue to resolve themselves.
Her fevers do seem to be slowly going down and not spiking as much. That’s good. Last night though she threw up after taking one med which felt like a big set back since she had eaten a nice dinner. She also had some weird breathing issues last night and they put her on oxygen to get her sats up to where they wanted them. Katie hated that tube thingy in her nostrils and kept pulling it out. Hopefully things will start looking up.
Here’s her count rundown for the curious out there:
Saturday, 7/24
WBC .6
HGB 10.4
PLT 97
ANC 40
Sunday 7/25
WBC .5
HGB 7.3
PLT 54
Monday 7/26
WBC .6
HGB 6.3
PLT 17
She feels a little better today, but still hates being in the hospital. She doesn’t want to eat much and doesn’t want to do much. Sort of how Kevin or I feel when we’re here. It’s cold, boring, and loud. The halls were swept over and over again by some janitor using a mini street sweeper last night. At one point I think he was doing it just to annoy us. I mean how dirty could the hall be to require that many passes back and forth and back and forth again and again? The beeping of various machines is starting to drive me insane. And, oh, yes, they are testing the fire alarm system today. What other invasive noisy things can they foist upon us?
We’ll keep you posted if we learn anything. Thanks for checking in on Katie. Thanks for all the thoughts and prayers too.
Love,
Amy, Kevin, Katarina & Christian
Saturday July 23, 2005 9:08PM CDT
Thanks for checking in on Katie. Well, another four weeks from her last hospital visit and guess where she is again? Same exact thing as last month: a high fever (up to 104 degrees) and a pathetically low ANC of just 40, so automatic admission. And, this occurred while she was on just 75 percent of her normal chemo dose. They took blood for blood cultures and urine for urine cultures. Her initial urine test came back negative for anything. She’s tired and whiney. We’re also tired and whiney.
I can’t give you any more details as those of you with any experience with an ER on a weekend (“just 7 hours” waiting for a room) and a hospital on a weekend know that no one can tell you anything and there is no one around. So, who knows how long she’ll be in or if she has anything other than “an unknown virus.”
If my update sounds a bit terse it’s because we’re sick and tired of having Katie go through this monthly now since April and we’re also sick and tired of trying to do “normal” things and have all our plans undone. (She did NOT get to see The Little Engine that Could and take a train ride as we had planned. Her fever hit on Friday while we were in Champaign and we headed home that night. So, if any of you are in/around Monticello, IL at the exhibit, please share photos for Katie’s benefit!)
I’ll update when we learn something. Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 9 months and 23 days
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges stacking up under your desk? Old cell phones sitting in a drawer? E-mail me and we’ll collect them to benefit The Leukemia & Lymphoma Society. I have postage paid envelopes that I can send to you to participate in this recycling fund raiser. Read more about this recycling program.
Total cell phones collected as of 7/23/05: 79
Total ink cartridges collected as of 7/23/05: 49
Total Relentless wristbands sold as of 7/23/05: 28
Total Relentless car magnets sold as of 7/23/05: 12
NEW! Relentless red rubber wristbands. We are selling these for $2 each, of which $1 is donated to The Leukemia & Lymphoma Society. E-mail me if you’d like to purchase any.
NEW! Relentless ribbon car magnets. We are selling these for $5 each, of which $4 is donated to The Leukemia & Lymphoma Society. E-mail me if you’d like to purchase any.
Number registered to join our team, Katie’s Cheerleaders as of 7/23/05: 26
Total amount raised as of 7/23/05: $1,846.50 (18 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Saturday, July 16, 2005 10:10 PM CDT
Thanks for stopping by to check in on Katie. She is doing pretty well. The past two weeks were pretty “normal” in the whole scheme of things!
She’s been on 50 percent of chemo for the past two weeks and from the outside, all looks like she’s tolerating it well. She had a home nurse visit yesterday (with her favorite, Nurse Joe) and after getting her blood counts, they were high enough to allow her to move up to 75 percent of her normal dosage. Hopefully she can get back on 100 percent chemo soon. (The nasty virus she had at the end of June wore her body down and so when her blood counts got below a certain level, to start back up on chemo, she had to start slowly to allow her body to recover from the virus.) Her counts are more in her normal range once again so we’re grateful for that.
The week before last, we returned to German playgroup, German class, going out with friends, and doing all the busy day-to-day stuff. And, I have to admit, it was quite nice! Katie and Christian like to go out and explore and see and do as much as we do!
This past week, however, the kids had a slight cough and cold so we laid low once again. It’s very strange that so many people we know are sicker with colds, stomach flu, hand-foot-mouth disease, and other things now than in January! What is going on??
The steroids pulse that was over the 4th of July weekend wasn’t too horrible. She slept relatively well and the only real constant was the incessant bawling through every single bath. “I don’t want to get in the tub.” “I want to get in the tub.” “I don’t want to get washed.” “Wash me!” “I want more toys.” “I don’t want more toys.” “I don’t want my hair washed.” “Wash my hair!” “I don’t want to get out.” “I want to get out now.” So, no matter what the plan of attack was, she didn’t want it. Alas, we all got through it and bath time is once again calm.
Our 4th of July weekend was fun. The kids loved our neighborhood parade and even Christian got into the whole thing. He stood on the curb and when people threw him candy, he picked it up and threw it right back. : ) Katie on the other hand, collected about 2 pounds of candy on her lap. The kids both loved waving their flags to get more attention and more candy, of course!
We did go to see fireworks on Monday night. Last year Katie thought they were too loud and we ended up watching them from inside our car with the windows rolled up. This year wasn’t much different. Once they started, the noise was too much for Katie so Kevin and I took turns sitting with her in the car. She loved to look at them, but not hear them. And, our very creative little girl asked about the noise, “Are there hammers hitting the clouds?”
Christian had his 15 month check up on the 7th. And, his stats? He’s a whopping 32 pounds, 2 ounces and 35 inches tall. He’s still quite big! : ) He’s happily chasing Katie and being chased by her. And, more words are starting to pop out of his mouth: “Bread”, “Nana” (for banana), “Milch” (German for milk), and we swear he says “I don’t wanna.” He still doesn’t say “no,” but the “I don’t wanna” comes out just as appropriately!
On a serious note, but not to nag or anything, if you can, please try to make time to donate blood. I went this week and there were very few people donating. Please call your local blood donation center or participate in a local drive (usually sponsored by local churches and organizations) to help save a life.
Oma was here for a couple of days this past week to spend time with Katie and Christian. And since she was here babysitting, Kevin and I were able to attend the kick off party for The Light the Night Walk for The Leukemia & Lymphoma Society. The party was in downtown Chicago on a Wednesday night at 6:30pm. Not the easiest time or place for us to get there, but we did make it along with another Katie's Cheerleaders team mate, Deb.
ESPN Zone hosted the party (thank them for donating the excellent food, drinks, and their entire second floor) and it was great to pick up additional information and meet other teams. Knowing that this huge room of people is all working toward raising funds for a cure was truly inspiring. I wish every one of you reading this, every one of Katie’s Cheerleaders team members, and every single contributor to our fundraising effort could have been there to hear the personal presentation by a young woman (also named Katie) about her sister’s fight against Hodgkin’s lymphoma. Unfortunately, Katie’s sister, at age 33, lost her battle and passed away in February of this year at age 33, leaving behind young children. The emotional element of the night was even more moving than I anticipated and I believe it fired us up (and hopefully the entire room) to work our hardest to raise even more money this year for life-saving blood cancer research and patient support services.
To give you an update of how Katie’s Cheerleaders is doing, I’ve posted all updated info at the end of this journal update. We are moving swiftly toward our optimistic goal of our team raising $10,000! We thank every single one of you who are supporting our fundraising efforts through monetary donations, purchasing Relentless wristbands or Relentless car magnets, bidding or buying things we are selling on Ebay (or donating something of value we can sell on Ebay), and recycling old cell phones or ink jet and toner printer cartridges. As you know, every little bit counts and we appreciate everyone’s involvement and support.
Thanks for taking time to check in on Katie. We appreciate the thoughts and prayers for her!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 10 months exactly!
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges stacking up under your desk? Old cell phones sitting in a drawer? E-mail me and we’ll collect them to benefit The Leukemia & Lymphoma Society. I have postage paid envelopes that I can send to you to participate in this recycling fund raiser. Read more about this recycling program.
Total cell phones collected as of 7/15/05: 47
Total ink cartridges collected as of 7/15/05: 38
Total Relentless wristbands sold as of 7/15/05: 27
Total Relentless car magnets sold as of 7/15/05: 12
NEW! Relentless red rubber wristbands. We are selling these for $2 each, of which $1 is donated to The Leukemia & Lymphoma Society. E-mail me if you’d like to purchase any.
NEW! Relentless ribbon car magnets. We are selling these for $5 each, of which $4 is donated to The Leukemia & Lymphoma Society. E-mail me if you’d like to purchase any.
Number registered to join our team, Katie’s Cheerleaders as of 7/15/05: 26
Total amount raised as of 7/15/05: $1,226 (12 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Friday, July 1, 2005 2:25 PM CDT
Quick update with good news! Katie’s counts are up, up, up! It’s amazing what can happen in five short days!
For those of you interested in the actual blood counts, her ANC is now at 1209! That means we can go out this weekend and hang out with the germy 4th of July celebrating crowds. (Doesn’t that sound inviting?!) Her white blood count is 3.9, hemoglobin at 9.2 and platelets at a whopping 229. On Sunday her platelets were a mere 32 and we were thinking she’d could end up needing a transfusion! We were happy to see her counts get back on track and she’s acting so much more energetic too.
She did well at clinic today and the visit was short and sweet. They gave her the IV chemo (vincristine) and she starts her 5-day pulse of steroids tonight. She also starts up her daily oral chemo here at home tonight at 50 percent of her old, regular dose. So…cross your fingers that she handles getting back on the meds easily.
We hope everyone has a Happy and Safe 4th of July long weekend! Thanks for checking in on Katie and keeping her in your thoughts and prayers!
Monday, June 27, 2005 9:37 PM CDT
Thanks for checking in on Katie. She’s doing well. We think her counts are slowly rising as she’s a bit more energetic, eating more, and bugging Christian more. (She insisted he wear these bear slippers this morning. He acquiesced and stomped around the house looking like an infant caveman!) We went out this evening when it was cooler and she wanted to run through the sprinkler a few times and play a bit. Christian had more stamina for outside, so when she got tired I took Katie back in to relax and watch a bit of TV for a bit before bed.
The good news is that we don’t need to go to clinic (unless something unexpected occurs) until Katie’s scheduled clinic visit on Friday, July 1. On that visit they’ll do blood counts and see where she stands. She will get her scheduled dose of IV chemo (vincristine) and start her five-day pulse of steroids (yuck!), but her ANC needs to be at 1,000 and her platelets at 100 by Friday to start her daily oral chemo at home again.
She’s been off daily oral chemo since last Wednesday due to her plunging counts. The upside of being off daily oral chemo? She can eat up until she goes to bed. She drank a cup of milk at (gasp!) 8pm tonight. That never happens around here! I hope she doesn’t get used to it!
We hope that this “bump” in treatment (for the third month in a row!) is not going to be a monthly trend. It’s draining for her…and for us.
Thanks for all the thoughts and prayers on her behalf as she’s bouncing back slow but sure!
Sunday, June 26, 2005 12:00 PM CDT
Thanks for checking in on Katie. We couldn’t do any updates from the hospital as their network wasn’t working for us. Ah well, the good news is that Katie is now home as of Sunday afternoon!
Her fevers have finally subsided as her ANC has risen though it was only 416 yesterday and 272 today. Her WBC has risen a bit to 1.6 now. Unfortunately, her hemoglobin is at a low of 7.1 (they transfuse at 7.0 usually) and her platelets are at a low of 32 (they usually transfuse at 30). So…they sent Katie home and we’ll recheck blood counts on Tuesday. They feel that her platelets and hemoglobin have stabilized as they haven’t dropped dramatically like they have in the past few days. She’s not out of the woods for a transfusion yet, so please take time out of your day this week to make an appointment to donate blood to help kids like Katie, if nothing else!
We still have to lay low due to Katie’s low ANC so we won’t be doing much this week in terms of going out anyplace or hanging with friends. And, Katie’s tired with her low counts, so she isn’t going to have the energy to want to do much anyway.
All her blood cultures and urine sample remain negative for any bacterial infections and they’ve test for no other viruses. So, this is simply one big nasty virus that we don’t know the name of or the whereabouts of or anything.
The important thing is that Katie’s home and feeling a bit better. Just being at home makes her a lot happier! The one thing we learned at the hospital is that she loves the movie Monsters, Inc. She watched it, in its entirety, THREE times! She finds it funny in lots of spots!
Thanks for the thoughts and prayers. We all appreciate it!
Friday, June 24, 2005 8:41 PM CDT
Thanks for checking in on Katie. The 3rd unplanned clinic visit of the week ended up with Katie being admitted to the hospital. She still has continuing fevers (despite the Tylenol) and her ANC is still low.
The blood cultures from Wednesday (now over 48 hours old) grew nothing. The blood cultures from Thursday (now about 36 hours old) grew nothing. The blood cultures they took this morning haven’t grown anything yet either. This morning at clinic they also did a urine sample to see if Katie has a urinary tract infection. We should get the results of that test on Saturday.
The CMV and the mono tests both came back negative today. So, whatever unnamed/unknown virus this is, it is really a nasty one.
Her counts are still low with a .6 white blood count (.7 yesterday); 8.8 hemoglobin (9.5 yesterday), and platelets still dropping to 44 (yesterday they were 53). The good news is that her ANC is getting higher. I never thought I’d be excited about an ANC of 198, but I am. That means that these fevers might subside as well since her ANC is going up. Cross your fingers that that’s the case.
She is getting Tylenol in the hospital and an antibiotic every 8 hours in the hospital to ward off any infections she might pick up while at the hospital with a low ANC. They will do blood counts and blood cultures daily now to monitor what this virus is doing. She’s off chemo until her counts recover too.
So…how long will she be in the hospital? Until her fevers stop getting so high (hitting 104 is too much!), her ANC continues to rise, and her platelets start rising or stabilizing. She’s avoided any transfusions thus far and we’re glad for that!
We’ll keep you posted!
Friday, June 24, 2005 10:08 AM CDT
Yet another unplanned clinic visit. Katie's home nurse came and the antibiotic and blood draw went well. The nurse was literally pulling away when Katie threw up. So...Kevin is off to clinic with her yet again.
Her fever is still constant despite giving her Tylenol every four hours. Nothing has grown in the cultures taken on Wednesday or Thursday. And, we still don't have the test results for mono and CMV yet. We'll keep you posted.
Thursday, June 23, 2005 2:42 PM CDT
Today’s unplanned clinic visit was quick. She did register a fever at clinic today (102), but because she’s acting normal, has no other symptoms other than fever and some fatigue, they let her go home. Yay!
The first blood cultures, taken yesterday, are now 24 hours old and have grown nothing. Yay! They took more blood for cultures today, but it seems unlikely that she has a bacterial infection at this point.
They strongly believe that she has a virus and are testing for Epstein-Barr Virus (also known as mononucleosis) and Cytomegalovirus (CMV). We will get the results from both tests tomorrow, Friday.
Katie’s counts are still headed down. Her ANC today is 14. Makes 32 yesterday look good! Her platelets have dropped considerably to 53 from 110 yesterday. And, her hemoglobin is down to 9.5 and WBC down to .7. Alas, those monocytes are up to over 50 percent now which mean her ANC *should* go up shortly. Ah, that’s what we thought yesterday.
Tomorrow at 8am we have a home nurse coming to give Katie another dose of antibiotic (just in case) and do a blood draw. There is concern that her platelets are going down fast and she may need a platelet transfusion. If that is the case, we’ll know by lunch time and will have to head into clinic *again* for her to get platelets. We really hope this isn’t the case, but now is a good time to remind everyone to make time to donate blood or platelets to help people in situations similar to Katie’s.
As always, thanks for checking in on Katie.
Thursday, June 23, 2005 8:56AM CDT
Thanks for checking in on Katie. All is so-so here. Katie spiked a fever (over 101) on Tuesday night into Wednesday and so she earned herself an unplanned visit to clinic on Wednesday.
They did her blood counts at clinic and all her counts are really low (for her “normal” at least) with an ANC (Absolute Neutrophil Count) of 32. Yes, that is NOT a typo. Just 32. She has NEVER had that low an ANC ever, even during the most intensive phase of treatment! Her normal is well over 1,000. Generally the ANC needs to be about 500 to be safe to go hang out with all her friends and over 1,000 is ideal. With an ANC of 32 she is likely to pick up any and every bug out there, so we’re laying low right now. (At the clinic though, she did not register any temp high than about 99, so they let us go home.) As a precaution, she did get one IV dose of an antibiotic while at clinic.
For those of you with some background on blood counts, we do believe her ANC will rise shortly though as her monocytes were at 40 Her WBC was just .8 though which, again for her, is really low. And, platelets had dropped considerably (for her) to just 110 and hemoglobin to 10.1. If this is a virus, it’s one nasty virus that is really wrecking havoc with her system!
They also did a blood culture on Wednesday morning and we’ll see if any bacteria grow in the sample in the next 24-48 hours. If so, that means she has a bacterial infection and depending upon what type of bacteria is, it will determine what the next course of action is. Could just be antibiotics at clinic, at home, or a hospitalization. We hope it’s not a bacterial infection. And, based on her last experience with a bacterial infection (in April) her counts went really high instead of low, so maybe this isn’t a bacterial infection. Cross your fingers for her!
Kevin is taking her into clinic again today. She spiked another fever again yesterday into the night. She slept well though. At clinic, they are likely to do another blood count to see if her ANC is indeed rising and probably start another series of blood cultures as well.
And, with these unexpected turn of events, our vacation to Washington, DC has been abruptly cancelled…again. This time around we really didn’t talk about the vacation. We quietly contacted a few people, made a few arrangements, started packing up a few things. We didn’t want to “promote” the vacation and thus jinx the chances of it happening this time. In fact, we only started talking about it in great detail to Katie on Tuesday. She wanted to go to “Washington, D. C.” and asked us if there were playgrounds and parks there—her favorite things you know!
During all this hub-bub, Katie is handling things pretty well. Despite the fever, she doesn’t seem too out of sorts. She’s drinking a ton and eating somewhat well. She continues to play and act normally. She even handled going to clinic on Wednesday pretty well. We had to miss going to German playgroup, but she took it in stride. And, she was good for all the nurses and doctors at clinic except the poor nurse who had to access and de-access her port. And, before she went to bed last night, she said, “I’m sorry I weine (cried) at the doctor’s.” : (
Thanks for checking in on Katie. We’ll update when we know anything more. Please keep her in your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 10 months and 24 days
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges? Old cell phones you no longer want? E-mail me and I’ll collect them to benefit The Leukemia & Lymphoma Society. I have postage paid envelopes that I can send to you to participate in this recycling fund raiser.
Total cell phone collected as of 6/23/05: 29
Total ink cartridges collected as of 6/23/05: 10
Number registered to join our team, Katie’s Cheerleaders as of 6/23/05: 13
Total amount raised as of 06/23/05: $350 (3.5 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Tuesday, June 14, 2005 11:44 PM CDT
I finally got around to updating the kids' websites. Visit their sites to see the latest smiles from Katie and Christian.
I also recently read that there is a critical need for blood donors with A negative, B negative, and O negative blood types in the Chicago area. Please consider taking some time from your busy schedule to donate blood today!
Monday, June 13, 2005 12:12 PM CDT
Thanks for stopping by to check in on Katie. She’s doing great. Her clinic visit on Friday, June 3 went uneventfully. It was a quick clinic visit in terms of the actual doctor visit and chemo administration, but long because (gasp!) Kevin decided to leave early and get there early and no one was prepared to see Katie yet! So…they had to sit for over an hour and a half in clinic before the gears started churning with the various clinic personnel to get the show on the road!
But, we are happy to report that she handled this past clinic visit beautifully! We also feared the worst this time around as she had said, repeatedly on Thursday preceding her clinic visit, “I don’t want to go to the doctor ‘morrow!” We mention this because every time her port is accessed (or deaccessed) she has a complete meltdown. This time her visit went smooth as silk and SHE DIDN’T CRY! I guess she’s getting used to the whole procedure…even when she has to wait a long time. Her next clinic visit is scheduled for Friday, July 1. We get to celebrate July 4 with a child who can do her own fireworks show courtesy of steroids that week! Blech.
The five days of steroids went okay. She had two major meltdowns this time. Once at the zoo when we saw the picnic area in the distance and then we decided to go to the opposite direction she had an all-out meltdown complete with screaming, crying and red-faced hysterics…all in front of her very patient friends. She hollered: “Turn around.” “Go back.” “I want to eat.” And, as soon as we bid our friends good-bye and turned back in the direction of the picnic area, she was like a light switch that got turned off. Cool, calm, and collected. We proceeded to eat lunch and she was so cooperative and happy. She is like Dr. Jekyl and Mr. Hyde on steroids and you just never know what the trigger on and trigger off is going to be! I tell you, the steroids affect my moods and energy level as much, if not more, than Katie and I’m not even the person taking them!!
The other meltdown was during German playgroup. We hosted playgroup at our house this week and with the warm weather, decided to have everyone out in the yard. Well about an hour into the get together, Katie proclaimed that she needed to go inside. She went inside, had a fit, and then said she was going to take a nap. She did proceed to settle down, but I don’t think she truly napped. When Christian and I came in from outside almost an hour later, she asked sadly, “Where did all my friends go?” It just tears at you that her moods are dictated by something other than her normal self and she missed out on playing with her friends and she later wants to somehow go back and rejoin things in progress even though the event is now over.
Other than those two major outbursts, it was a pretty smooth steroid week. We started the week off with a visit by Uncle Steve, Cousin Michael, and Oma. Katie enjoyed going for a hike, eating meals with everyone, and watching Michael skateboard. When they all left, she was sad to have just boring old mom and dad and Christian left around to entertain her.
And, what else have we been up to? Gee, with the suddenly blazing sun, hot temperatures, rising humidity, and dry, crunchy grass we’ve been outside sweating and getting dirty! We have celebrated Oma Carole’s birthday, gone to the farm zoo, the big zoo and a farm park, taken bouncy bike rides through the forest, attended our neighborhood outdoor concert, splashed in the kiddie pool in our backyard, run through the lawn sprinklers (ours and our neighbors during walks!), played with friends outside, and been having lots of fun! So much fun that the kids are visibly dirty and sticky at the end of the day…and exhausted!
Katie finds it “enjoyable” to be outside and get wet. On the other hand, Christian simply LOVES water. We took out the wading pool and that little guy figured out how to belly flop right into the pool without any hesitation. He didn’t care if the water was ice cold. He saw WATER and HAD to get in it -- FAST! Katie was more timid and commented how the water was too cold and she wasn’t going in and blah, blah, blah and she pranced around the pool, touching the water here and there. But, after Christian dived in, she felt she had to follow and was romping along with him in what she called, “The big blue tub.” It’s a plastic, round, blue kiddie pool. Looks nothing like a tub to me, but I guess to her water means bathtime and bathtime is tubtime.
We also finally found time to get Christian’s first haircut. It kept getting postponed due to his possible chicken pox exposure, then friends visiting, and then family visiting. So on Sunday he got his first trim to get rid of those little curls that were developing in back and around his ears. And, my oh my! What a handsome little boy he is now! All trimmed clean and close, his chubby cheeks suddenly look chubbier!
He really had his own meltdown at the kiddie barber yesterday. First we sat him in the cool Jeep chair and put Elmo on the TV for him. Then when the hairstylist approached, he acted like she was a nurse or doctor and gave his best hysterical performance. I then took him and he sat in my lap where he continued to wail and flail and the hairstylist continued to gingerly complete the world’s fastest haircut. In the middle of the trim, he suddenly settled down and then seemed to actually enjoy getting his haircut! The rest of the haricut went smoothly and he (and Katie too) were rewarded with a balloon and a small fish toy!
Also, we have to remind everyone, that if you can, please take an hour to donate blood. Kevin donated blood last week and just like my experience last month, there wasn’t a wait to donate and very few people, just two, came in the entire time he was there. So, please, please find your closest blood donation center (LifeSource and Heartland Blood Centers in Northern Illinois), get out of the heat and donate some life-saving blood. You’ll get free cold juice and cookies too after you donate!
We must say thank you to our friend Deb in her work for the ink cartridge and phone recycling program. She alone has collected, to date, 17 unwanted cell phones and 8 used printer cartridges to benefit The Leukemia & Lymphoma Society recycling campaign. If you have an unwanted cell phone (everyone has one of these in a drawer!) or used printer cartridges, I can send you a postage paid envelope to send these in to benefit The Leukemia & Lymphoma Society. Just e-mail me and I’ll get an envelope out to you asap.
I’ll leave you with a conversation I had with Katie last week. I may have converted the next generation to look for some healthy food alternatives!
Katie: “What is that?” (pointing to a glass of juice on the table)
Amy: “Apple juice.”
Katie: “It looks like mango juice.”
Amy: “No, it’s apple juice.”
Katie: “Is it ‘ganic?”
Amy: “What?”
Katie: “Is it ‘ganic?”
Amy: “Organic?”
Katie: “Yes.”
Amy: “No, actually this isn’t organic apple juice. We should buy some organic apple juice next time.”
Can you believe that she is asking if something is organic? She and I have never talked about organic food. This is all she’s heard and overheard from conversations around the house and with other friends into organic food.
We always appreciate your thoughts and prayers for Katie and for all of us. Thanks for taking the time to stop by!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 11 months and 3 days
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges? Old cell phones you no longer want? E-mail me and I’ll collect them to benefit The Leukemia & Lymphoma Society. I have postage paid envelopes that I can send to you to participate in this recycling fund raiser.
Total cell phone collected as of 6/12/05: 21
Total ink cartridges collected as of 6/12/05: 10
Number registered to join our team, Katie’s Cheerleaders as of 6/12/05: 13
Total amount raised as of 06/12/05: $350 (3.5 percent of $10,000) A great big thank you to our latest contributors! Your Katie original painting will be in the mail shortly!
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Tuesday, May 31, 2005 7:52 AM CDT
Thanks for checking in on Katie. All continues to go well. Katie’s shingles are pretty much all cleared up and just a faint outline of a rash still is visible on her foot and leg. Christian has (knock wood!) still not shown any signs of chicken pox, so we’ve all been very lucky. She’s scheduled for a clinic visit on Friday, June 3 which is almost upon us. I find it fascinating how quickly four weeks now flies by when our lives are segmented into precise monthly blocks separated by each monthly clinic visit.
The week leading up to Memorial Day weekend was pretty low-key. We started to get back into the regular routine of life again. Katie returned to her one half-day a week school and finished up the school year on the 23rd. She made gifts for her two teachers: painted wooden picture frames. We had picked up the picture frames and she and I went outside to paint them one Sunday afternoon. I really didn’t think she’d paint them both in one sitting, let alone do it in such precise detail, but she was very, very focused. She chose the colors (one was grey and blue and the other was white and green). She painted not only the flat frame portion, but the inside rim and outside rim! She was a true artist with her determination. But, most of all, she enjoyed it. She just kept painting away, dipping for more color, rinsing her brush and so on. The bad thing? I forgot to take photos of the picture frames before I wrapped them up and Katie gave them to her teachers. Trust me though, they came out beautifully! She returns to her school program again in September.
Katie and Christian returned to their German class and German playgroup. We also continued life’s boring routines such as errands and chores and vet visits and so forth. The one thing we were really looking forward to was a Memorial Day weekend visit from our friends Alice and Doug and their two daughters who are the same ages as Katie and Christian. We had a wonderful weekend with them just relaxing and catching up. The highlight for the kids was a visit to Brookfield Zoo—of course! Doug was running the Lakeshore Marathon on Memorial Day so we still had some of our weekend to continue the rest and relaxation on our own. Kevin and I took Katie and Christian to a few different playgrounds and to a local farm zoo. The weather could not have been nicer this weekend and we spent a lot of time outside. The kids definitely get a workout being outside and sleep like rocks!
This week we’re gearing up for another visit, this time from Uncle Steve and Cousin Michael and Oma! Katie and Christian are going to be worn out again next weekend! She’s already requested that Michael bring his skateboard and she’s “going to show him how she rides her bike.” We hope she doesn’t think she is going to get to try out his skateboard. : )
Katie’s been feeling really good. She starts up another five-day pulse of steroids on the 3rd which we aren’t looking forward to. She’s really been into riding her bike, playing baseball and basketball, and playing in her outdoor playhouse. She is suddenly playing “Mommy” to her little bear, Green Bear. She wraps him gently in a burp cloth (she says it’s his blanket), gives him a bottle or nurses him, selects special toys for him to “play” with, and reads him books. When we get ready for bed, she also brushes Bear’s teeth too! I had asked her if Green Bear were a boy or girl. She answered, “No, a bear.” I asked her if Green Bear were a boy like Christian and Daddy or a girl like me and her. She again answered, “Bear’s a bear.” So…just to set the record straight, we refer to Green Bear using the masculine pronoun regardless of Katie’s declarations. She also says that she and Bear are “best friends.” : )
We also wanted to let you know that our friend Kim Nemire finished the Indy Mini on May 7 with a time of 2 hours and 23 minutes which was 7 minutes faster than her goal. The half marathon raised funds for The Leukemia & Lymphoma Society and she alone raised $2,000. All the participants in the Indy Mini together raised $250,000 for The Leukemia & Lymphoma Society. I wanted to share an excerpt from her thank you note outlining her 13.1 mile run: “Along the route there were definitely moments when I wanted to stop and walk. However, cancer is relentless, and I can be too. Each of the 13 miles I remembered a different family that has battled blood cancer. Unfortunately, it was not difficult to come up with 13 people. When I’m 60 and still running, I hope and believe that the number of people affected by these cancers will be much smaller. I see firsthand how research is making a difference in many lives. We will keep doing this until there is no longer a reason. Until that day, I hope that you will continue to support the Society in any way you can.” We want to congratulate Kim and everyone who participates in Team in Training events to raise money and awareness for The Leukemia & Lymphoma Society. Way to go Kim and thank you to all who supported her!
As you know, we’ve already started our fundraising for The Light the Night Walk in September. The walk doesn’t require the training necessary for a half or full marathon. The walk doesn’t require you to fund raise or donate -- unless you choose to. The walk doesn’t require any equipment other than some comfortable shoes. The Light the Night Walk only requires one short evening out of your busy schedule. Please consider joining our team, Katie’s Cheerleaders, and spend the evening with us walking in the fight against blood cancers. All participants will carry a lighted balloon -- white for survivors and red for supporters -- to light the night with hope.
And, I need to remind everyone that if you have any used ink jet or used toner cartridges from printers at home or at work that are just laying around, let me know! I can either arrange to pick them up or send you a postage paid envelope to have them recycled. The Leukemia & Lymphoma Society receives a donation for every cartridge received. Additionally, we are collecting unwanted cell phones for the same cause. Please consider donating your old phone to this recycling fund raising campaign for The Leukemia & Lymphoma Society.
As always, we appreciate you checking in on Katie and all of us. The continued thoughts and prayers on Katie’s behalf are very welcome!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 11 months and 15 days
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges? Old cell phones you no longer want? E-mail me and I’ll collect them to benefit The Leukemia & Lymphoma Society.
Number registered to join our team, Katie’s Cheerleaders as of 5/31/05: 10
Total amount raised as of 05/31/05: $100 (1 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Friday, May 20, 2005 2:05 PM CDT
Thanks for checking in on Katie. She’s doing well recovering from shingles and there are still no signs of chicken pox on Christian. It’s been a long week since all this craziness started.
Katie finished her acyclovir (the anti-viral med) on Thursday at lunchtime. She was calling it her medicine to make her foot better! She was very good about taking the liquid and drinking lots of water too. As a result of her excellent compliance in taking her medicine, the rash stopped spreading and started drying up and looking less red. By Sunday afternoon she was walking again. She was in a much better mood since her foot and leg didn’t hurt as much and she could get around easier. The rash is almost all gone now, but we’re still keeping her in long pants and socks at all times to keep her from irritating the rash, touching it, or letting Christian get near it. Fortunately, the weather’s been on the cooler side, so we don’t have to fight with her to wear pants and socks. Although, she has been insistent on wearing sandals which look really dorky with socks on, but if she’s happy….
I thought I’d outline a few issues regarding Katie’s shingles and Christian’s potential exposure to chicken pox. We’ve been getting a lot of questions about this now and are learning what the answers are as well.
How did Katie get shingles? I never heard of a kid getting shingles! Was she exposed to chicken pox?
Katie got shingles due to both her lowered immunity and stress. She is still undergoing treatment for leukemia and although she has fought off lots of bugs and hasn’t picked up some we thought she would, her immunity is not like that of a completely healthy person. Kids undergoing treatment for leukemia often come down with the shingles.
Shingles is the chicken pox virus come to life along nerve endings in those who have had chicken pox or have had the chicken pox vaccine, like Katie. Shingles can erupt due to stress.
In addition to her lowered immunity, she has had a lot of stress over the past few weeks. Remember when she had the bacterial infection? We had to take her in the middle of the night to the ER at the University of Chicago – two days in a row. The second visit resulted in a one day admission to the hospital complete with IV antibiotics and fluids, food she doesn’t care for, and various strange doctors and nurses poking and prodding her seemingly continuously. Then she got sent home to have a home nurse come visit for a week to administer antibiotics through her port which was accessed for a week. (She hates to have the port accessed and does not like to look at it. This alone is enough to really stress her out.) And, the home nurse visits weren’t the most stable. She had three different nurses over the course of five days.
To top it all off, she had her last clinic visit on May 6th which involved the usual visit plus some sedation for a spinal tap. We think this unusual combination stressed her and this is how her body is reacting to it. Children thrive on routine. Unfortunately, her routine has been out of the ordinary for a while lately.
Lastly, she was not exposed to chicken pox. Fortunately in all this she was not exposed to chicken pox and didn’t develop chicken pox. (That would be a whole ‘nother story which I don’t want her (or us!) to ever experience.) The one positive thing we have learned is that Katie’s original chicken pox vaccine (done when she was 18 months old) is still working as the shingles develop from the chicken pox virus settling within you and she obviously has the chicken pox virus in her.
Since Katie had the chicken pox vaccine and it worked, do you have to be as vigilant about keeping her away from sources of chicken pox -- those who have it, those who have been exposed to it within the past three weeks, and those who got the chicken pox vaccine within the past three weeks?
Yes, we still have to keep Katie away from chicken pox in all shapes and forms. And, Christian still can’t get the chicken pox vaccine until Katie is six months off treatment. This will mean he’ll be about 2 ½ when he gets the chicken pox vaccine and we’re going to have to be vigilant about him staying away from sources of chicken pox as well. So, if anyone we are going to hang out with gets the chicken pox vaccine, we have to stay away for about three weeks. And, if anyone is exposed to chicken pox or gets chicken pox, we need to do the same to play it safe.
Doesn’t this all mean that if Katie were exposed to chicken pox, she’d just get shingles or nothing? Why all the worry?
The short answer is we don’t know. And, since we don’t know, we don’t want to find out. We don’t want to risk her getting any type of infection that zaps normal, healthy immune systems, let alone her compromised one. So, we’re going to just avoid chicken pox and not find out what she might or might not develop from exposure.
Aren’t you keeping Christian quarantined because he might have been exposed to the chicken pox virus through the rash on Katie’s foot? If he is at risk for coming down with chicken pox, isn’t Katie? What’s the difference between this exposure and other possible exposures?
Yes, Christian is quarantined for 14 days from hanging out with anyone who hasn’t had the chicken pox or the chicken pox vaccine. We don’t want to take chances of spreading chicken pox unnecessarily. This means he’s missing out on his German class, playdates, and German playgroup. (Although we had one “brave” friend and her son come visit us this week for a playdate as they’ve both had the vaccine. Katie and Christian enjoyed the visit this week a lot!) For the most part, Katie is missing out on the same too. I can’t get a babysitter every time there is a get together or class so we just go for walks, play in the yard, or in the house. Christian will be out of quarantine by the 26th. There is a chance that chicken pox can still show up for 21 days from exposure, but most cases show up within 10 to 14 days of exposure.
As for Christian, we do believe it’s highly unlikely he’ll get chicken pox, but there is a slight chance. The shingles rash, if the rash is leaking (sorry to be graphic), can cause someone who has direct contact with it AND has either never had chicken pox or not been vaccinated to get chicken pox. Christian has never had chicken pox and hasn’t been vaccinated against it yet. He and Katie took a bath together on Thursday morning (before Katie’s rash was noticeable) and so there is the possibility that he might have had contact with rash fluid in the bath. The thing is I think it’s a slim chance as he was in his baby tub within the big bath tub while she was in the main bath tub. They didn’t share water, wash cloths, or towels that day, so I think transmission this way is unlikely. During the day, Katie had on long pants and socks covering the rash, so he would have not had a chance to touch it either.
And, yes, Katie and Christian live under the same roof during this time period. We are taking extra precautions though. Katie and Christian do not share utensils, sippy cups, food. We aren’t bathing them together anymore. They don’t share any clothes, towels, and washcloths. They don’t kiss each other on the lips – if we can help it. (Katie loves her brother so!) I’ve even been washing Katie’s clothes and Christian’s clothes separately from each other and from ours “just in case.” Katie continues to wear long pants and socks at all times (even for bedtime) to not let the shingles sores (when they were oozy) “contaminate” anything. We don’t have a choice but to all live together and we’re taking every precaution we can.
And, with that I’ll leave you with some recent conversations we’ve had. This one was during breakfast today:
Katie: “Remember baby birds don’t drink mama’s milk?”
Amy: “Yes, that’s correct. Baby birds don’t drink mama’s milk. Mama birds go find food for baby birds to eat.”
Katie: “Baby rhinos and baby giraffes don’t drink mama’s milk either.”
Amy: “No, Katie. Baby rhinos and baby giraffes and baby tigers and baby dogs and baby cats all drink mama’s milk. Baby birds don’t drink mama’s milk though.”
Katie: “Yes.” (pause) “Mama birds get chicken and French fries for baby birds to eat. Mama bird drops the food into the hole (thinking of the woodpecker that has made a hole/next in our tree I guess) for them to eat.”
Amy: “And, where do mama birds get chicken and French fries for their babies?”
Katie: “McDonald’s.”
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Katie and I took Chloe (our cat) to the vet for her yearly check up. We were sitting in the exam room waiting for the vet to come in. Chloe’s crate was open, but Chloe refused to come out. Chloe was meowing here and there and rubbing our hands if we stuck them in the crate. Katie and I were just talking to Chloe when Katie addressed me, “Mama, I think Chloe’s a bischen (little) scared.” I then used that as a jumping point to talk about how Katie feels when she goes to the doctor. I think Katie really connected with how Chloe was feeling at the vet’s office!
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Christian has been eating an apple and apricot sauce for breakfast. We don’t have apricots in the house very often and Katie asked what Christian was eating. I told her it was apples and apricots. She now refers to apricots as “africots.” I’m sure she thinks they only grow in Africa too.
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Christian is walking like he’s been doing it forever. He and Katie now love to chase each other around the house. He’s been more cognizant of everything lately and gets very excited to see bunnies in our backyard. He is also keen on watching all the geese -- and now baby geese – at the local ponds. And, if he sees a cat somewhere, he tells us!
We are convinced he says “Milch” (German for milk) when we give him a cup of it. He is also quite proficient at saying “bye-bye” and waving at the appropriate time now. He loves to build small towers with these big cardboard boxes we have. He stacks them up, then takes about three of them, props the tower under his chin, lifts, and then starts walking around the house with a big grin as to how proud he is of his accomplishment!
He also surprised Kevin the other day. I went out with Katie. Then Christian went to the back door, collected his gym shoes, brought both of them to the kitchen, sat down, and looked up at Kevin to put them on him! He wanted to go out too!
So…thanks for your continued concern and prayers for Katie. She’s doing very well and we are hopeful that we can continue into summer with no more blips for her!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 11 months and 26 days
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
An easy way to help! Do you have empty ink jet and toner cartridges? Old cell phones you no longer want? E-mail me and I’ll collect them to benefit The Leukemia & Lymphoma Society.
Number registered to join our team, Katie’s Cheerleaders as of 5/20/05: 10
Total amount raised as of 05/20/05: $100 (1 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Saturday, May 14, 2005 9:48 PM CDT
A quick update to let you know that Katie’s doing better. She isn’t as touchy about her foot and leg as she has been, so things are improving. The rash also doesn't look as red and irritated as it has. She still doesn’t want to walk on her foot though, but she is less cranky and irritable. She slept pretty restlessly last night, so I think we’re all a bit on the cranky and irritable side regardless!
The dermatology team called on Friday to confirm that the rash was indeed shingles. So, everyone was right! We just have to watch Katie to make sure no more areas get the rash and that no additional dots appear on her.
As for Christian, still no signs of chicken pox and we hope it stays that way!
Do you remember when I’d update about every week, often times taking even longer to update? I miss our boring life with nothing to report....
As always, thanks for checking in on Katie!
Thursday, May 12, 2005 9:45 PM CDT
Thanks for taking time to check in on Katie. Things are just way too exciting around here. Today Katie was acting a bit more tired and a bit more irritable, but we just chalked that up to the steroids which ended on Wednesday morning. However, when she got out of the bath this morning and I noticed a red rash on her left foot, I figured something else was up. I called the oncologist and we were going to wait and see what the rash did and how Katie was acting.
After seeing that the rash had spread a little in just an hour’s time, I took photos of it and e-mailed it off to her nurse practitioner. Well, a picture may be worth a 1,000 words, but it isn’t worth a diagnosis. So, we packed up our bags and hiked down to clinic. The dermatology crew was waiting for us when we got there and the consensus was shingles! Yuck for Katie. They took a sample for further examination and for cultures to confirm, but everyone seems to be in agreement without the scientific proof yet.
The good news is that Katie gets to go home and take an antiviral med (acyclovir) four times a day for seven days. No hospital stay required! Yay! The other good news is that the chicken pox vaccination she got when she was about 18 months old must have worked and left the chicken pox virus in her as she didn’t get full-blown chicken pox. The other good news is that she is not contagious. We just keep a sock on her foot and long pants on her and don’t let anyone who hasn’t had chicken pox or the chicken pox vaccine touch her rash and she can’t give anyone chicken pox. (Shingles is not contagious in any case.)
The bad news is that Katie feels rotten. Her foot and leg hurt and she doesn’t want to walk which is understandable. The rash is on the back of her heel and the bottom or her foot and she doesn’t want to wear shoes either. The other bad news is that since Christian and Katie took a bath together this morning (before I noticed the rash) Christian could possibly get chicken pox since he hasn’t gotten the chicken pox vaccine yet. So, we’ve got to keep him quarantined for a couple of weeks. The other bad news is that next week we can’t go to DC for our vacation as we had planned.
We kind of think that since shingles can erupt from stress, that the two ER visits and hospital stay a few weeks back really upset her and her body has now found a way to express her extreme displeasure.
Despite all the hub bub, she is still talking like a big chatterbox. She narrates the drive to and from clinic in detail:
“Look at that little school bus way up high.” (A smaller school bus going up a ramp on the highway in the opposite direction of us.)
“There’s a truck up high.” (Pointing out a construction vehicle parked on the top of a big mound of dirt at a construction site along the highway.)
“Be careful of that big truck.” (Referring to the giant semis we pass while we stay in the left lane.)
“I see Michigan See.” (Katie calls Lake Michigan, “Michigan See” where See is German for lake. We see Lake Michigan when we drive to the University of Chicago where her doctors are.)
“We need to find a parking Platz. There are too many cars here. Bitte, go outside and park.” (When we get to the parking garage at the U of C, it seems to always be packed and finding a spot is hard. Katie’s picked up on this.)
Christian came to clinic with us today. This is the first time he’s been there since December. He didn’t flinch at all when all the doctors and nurses were buzzing in and out of the room unlike when he goes to his pediatrician. When the pediatrician or nurses come into his exam room, he bursts out crying until they leave the room. Interestingly, at clinic, he actually watched everyone coming and going and seemed to realize, “Hey, I’m off the hook. This is all for Katie.”
Additionally, please consider taking an hour out of your day to donate blood. I went to donate on Wednesday evening, May 11. I usually go about 6pm. Normally it’s very crowded and all chairs are filled. Well, there wasn’t a single person donating when I walked in. I could choose any chair I wanted! While I was donating, two other people came in, but when I left, there still had been no other people come in. I asked the nurses why there were so few donors and they didn’t know why it was so quiet either. With the inactivity at the blood donation center, I am sure that there are blood shortages or there will be shortly. Please take a moment to donate blood today. In the northern Illinois area, contact LifeSource or Heartland Blood Centers to set up an appointment. LifeSource’s website says, “We need to see more than 1,500 donors every 24 hours to ensure a safe and adequate blood supply for Chicagoland.” Please consider donating the gift of life.
Please continue to keep Katie in your thoughts and prayers. We all appreciate it!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 4 days.
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
Number registered to join our team, Katie’s Cheerleaders: 4
Total amount raised as of 05/10/05: $100 (1 percent of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Tuesday, May 10, 2005 10:46 PM CDT
Thanks for stopping by to check in on Katie. No news is good news on her spinal tap. Thankfully her last dose of steroids is on Wednesday morning and then she’s free of them for almost another month. Yay! Yay! The intense hunger hasn’t kicked in yet, but the moodiness is in full swing. She gets fixated on one thing and won’t let it go. To keep the peace, we just have to give in sometimes even when we don’t want to.
I told Katie this morning that when she’s happy, I’m happy. I was explaining this to her while she was whining about how she didn’t have enough banana and wanted more milk, even while there was a huge chunk of banana on her placemat and a full glass of milk. Later in the day, she asked me out of the blue, “Mommy are you happy?” I asked her, “Are you?” She said, “Yes.” So, I replied, “If you’re happy, then I’m happy.” Hmmm. Am I laying the ground work for her to feel guilty about making sure she’s always happy to keep me happy? Ah well, if it keeps her from whining about things that aren’t worth whining about, so be it.
We had a very nice Mother’s Day. We went to Oma Oma Violet’s assisted living facility for a very nice lunch with her and Oma Carole and Tante Suzanne. The kids were well behaved (until it approached nap time for Christian) and loved the resident cat, Mugsy, and dog, J.D. The cat loved the kids for some reason and kept us company for most of our visit. The rest of the day we spent outside and with the weather as gorgeous as it was, we had a picnic in the gazebo for dinner. Everyone was happy to be outside so much!
The big news is that we’re taking a vacation! Next week we’re off to Washington, DC to visit friends and just relax. We are so looking forward to checking out all our old haunts (Kevin and I lived there for 7 years), catching up with friends, and showing Katie and Christian some of the Nation’s Capital. I have this unnatural desire to have the kids climb the steps of the Lincoln Memorial and get the perfect photo of them sitting there, smiling. It took me 22 years to get to do that and I want proof that they were there much sooner than me!
Last, but not least, we’ve update the kids’ websites. Take a look at Katie’s and Christian’s newest photos along with the newest photos Katie’s been taking herself!
Thanks for keeping Katie and all of us in your thoughts and prayers. We appreciate it!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 6 days.
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Light the Night 2005 Update
Help us raise money to find a cure for blood cancers!
Number registered to join our team, Katie’s Cheerleaders: 4
Total amount raised as of 05/10/05: $100 (1% goal of $10,000)
To register and join Katie’s Cheerleaders team visit The Light the Night walk site.
To donate to our team visit Katie's Cheerleaders team fundraising site.
To get our mailing address to send a check donation, please e-mail us.
Katie hopes to see YOU at the Riverwalk in Naperville, Illinois on Thursday, September 22, 2005!
Friday, May 6, 2005 1:27 PM CDT
Katie's clinic visit today went well. The initial results of the spinal tap were all clear. (We get the final results on Monday.) Her bloodwork counts are all in acceptable and expected ranges, so no surprises there. She’s scheduled for her next clinic visit on Friday, June 3.
Thursday, May 5, 2005 9:51 PM CDT
As always, thanks for stopping by to check in on Katie. She continues to do well and has had a normal, activity-filled week since we last updated.
She has another scheduled clinic visit on Friday, May 6 which includes the now quarterly spinal tap along with an IV dose of chemo. And…she starts a five-day long pulse of steroids on Friday night. Uh-oh. I better hit the grocery store…again!
Katie’s been feeling pretty good. She did the birthday party circuit last weekend and hit two Disney Princess-themed birthday parties for her friends. Guess what she said she wants for her birthday party this year? A Disney Princess piñata! We’ll see about that, but she did enjoy batting around a piñata this past weekend. It was her first experience with a piñata and once an older kid batted it open, she *really* liked the idea of a piñata as she filled her pockets with candy!
Christian celebrated his 13 month birthday on Sunday, May 1 by walking steadily and for long distances. He had been walking short stretches since his birthday on April 1, but exactly one month later he is totally walking. And, he started running on Wednesday, May 4. Yes, running. He was going after his sister of course! He’s loving this freedom to explore while having his hands free to pick up and carry whatever he feels like toting around. We, however, just find it weird to see him toddling around, turning corners, and coming out of rooms standing up.
Katie went back to school this week and made me a very special Mother’s Day present! I was very surprised! It’s a potholder with her handprint on it. There is no way I’m putting that into use. It now has a place of honor hanging in the kitchen on our bulletin board.
The weather has been on the colder side, but still pretty. We’ve been trying to spend time outside when we can. Katie loves to pick flowers (mostly dandelions!) for me and I have a neat wilted pile of flowers collecting in the garage now! She has also taken to doing her own rendition of cutting the grass with a lawnmower. She hunches over and puts her arms out in front of her, curled up. She looks a lot like a cross between Frankenstein and a large rabbit running across the grass!
We went to the zoo this week and Christian and Katie really enjoyed it. It was a bit too crowded to let Christian cruise around on his own, but he really enjoyed seeing all those large animals up close. Katie made sure we checked in on her favorite animals, the rhinos and the tapir. All looked to be doing well!
And, as always, thanks for the continued prayers for Katie. We hope everyone has a great weekend and a very special Mother’s Day!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 11 days.
Friday, April 29, 2005 12:29 PM CDT
Thanks for stopping by to check in on Katie. All continues to go well in our wild and crazy girl’s life. The happy dance was done yesterday right before lunch. The reason for the happy dance? Katie’s port was de-accessed, or the needle was taken out of her port after being in since Friday, April 22 when she was admitted to the hospital. The home nurse came yesterday to administer the last IV dose of antibiotics and then de-access Katie and then the happy dance! We’re all happy now and Katie doesn’t have her anxiety about the needle, tubes, and sticky tape on her chest anymore. Yay!
Her next scheduled clinic visit is Friday, May 6. She will be getting a spinal tap (now done every three months) during that visit, so we’ll be at clinic longer as well.
Despite being accessed all week, Katie’s been busy and feeling good. She pretty much took to her usual routine without any issue so we ran errands, went to the playground, took walks, visited with friends, and just did everything as usual this week. She just dealt with the hour-long home health nurse visits by watching cartoons during the IV push and asking me to sit next to her during it all. So…we’re back to the usual, thank goodness.
I will leave you with another Katie-ism. She was riding her bicycle (with training wheels) on the sidewalk and I had asked her to turn around. She was working on it, trying to figure out how to do it without falling over, getting stuck in the grass, or running over my or Christian’s toes. So, she starts backing up and says “I’m backing wards.” I think she was trying to say “I’m going backwards.” or “I’m backing up.” Instead, she combined the two to form a Katie-ism. (Other Katie-isms you might recall are: “kabuz” for “because” – still in use; “padudu” for “pacifier” – no longer in use; “wawer” for “water” – no longer in use; "porky" for "prickly" -- still in use.)
Thanks for the continued thoughts and prayers for Katie. She’s doing great once again!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 18 days.
Monday, April 25, 2005 11:43 PM CDT
Thanks for continuing to check in on Katie. We really appreciate all the support we get from everyone. We are very, very happy to report that she’s really back to herself. Really!
Nurse Joe came on Sunday morning and after the initial, expected resistance by Katie, she cooperated. During the actual time she had to sit still during the antibiotic push, she watched cartoons. It worked out well and the rest of the day we enjoyed together as a family.
Today Nurse Eileen was Katie’s nurse and she handled this visit pretty well too. Katie also had a nice time playing with her friend John today before the nurse visit and taking a wagon ride to the playground with Daddy after dinner. Christian got a chance to return to his mini-gym class today and surprised me by showing off his brand new skill. He suddenly can walk up the slide the wrong way! We all know that this is the best way to get to the top of the slide. The ladder is just *so* boring!
Other good news is that insurance is covering all five home nurse visits. We were worried we’d have to drive down to clinic for three of the five days she needed antibiotics, so at least that issue is now resolved. Katie is much happier here at home being attended to than going to clinic, especially in light of last week’s traumatic turn of events.
We hope last week’s experience was really a blip on her path through treatment. She has been so lucky in avoiding or resisting infections thus far. We have not had to deal with ER visits and hospital admissions. And, we hope we don’t have to deal with them anymore. No one wants to relive last week’s experience at all. And, it looks like Kevin will be out of town on business for a portion of next week, so we’re getting our usual group of emergency helpers back on call to help with Christian in case I need to take Katie in for something.
I also have to leave you with this exchange we had this morning.
Amy: (Calling to the kids to go upstairs to take a bath.) “Come on cuties! Let’s go upstairs.” (Katie’s walking up the stairs and Christian is crawling, following her.) “Are you two my cuties?”
Katie: “No Mommy, we are your bon bons.” (Pause.) “Chocolate bon bons. Chocolate.”
Amy: “Okay.”
I’m still pondering that one. All I can say is that I know that chocolate bon bons are really special….both the ones you get for Valentine’s Day and the ones that I have that go up stairs together for bath time! : )
We know that all the thoughts and prayers on Katie’s behalf really do work. So, a great big thank you to YOU!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 22 days.
Saturday, April 23, 2005 11:33 PM CDT
Katie’s home again! She made it home after lunch today on Saturday, April 23, 2005. She was really happy to be home and babbling most of the afternoon and evening. She also was running around the house and also re-inspecting all her toys. She requested spaghetti for dinner and we were happy to comply. She was also happy to see her own bed—she hasn’t spent an entire night in her own bed since Tuesday night.
The home health care nurse is scheduled to come at 10 am on Sunday. She’ll get her one dose of IV antibiotic each day with the last day being Thursday. We found out that Nurse Joe is coming tomorrow and she really liked him when he was her home nurse back in the summer, so we’re hopeful that tomorrow won’t be too stressful for her. The antibiotic (Ceftriaxone/Rocephin) takes about 35 minutes to administer via IV through her port, so hopefully she will be okay with this set up here at home. If it doesn’t work for some reason, we will need to go to clinic each day which we’d like to avoid if possible due to the long drive and time commitment necessary.
Thanks for checking in on Katie. We appreciate the thoughts and prayers for her and for us.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 24 days.
Saturday, April 23, 2005 12:05 PM CDT
GOOD NEWS! The cultures taken on Friday at 4 am have not grown the strep pneumonia bacteria. The cultures taken on Thursday at 3 am have not grown any new bacteria. Her fever has also gone away and is back to normal. She also has had no adverse reactions to the antibiotics they’ve given her.
So…all this means that Katie can come home today, Saturday, April 23! She is eager to get back here and asked if she could paint…and go to the playground!! But, seeing as it’s suddenly winter again here (there are actually flurries floating around in the air as I type this), we may have to postpone the playground visit until after it warms up some.
She still will be on antibiotics here at home and will continue taking her other daily meds. She is having a home nurse administer the daily antibiotic here at home via IV for the next five days and they will do a blood count and additional blood culture at the end of the dosages to make sure all is well once again.
Katie (and we) have been very lucky. She’s not had any other unexpected infections or complications and this was her first admission to the hospital since she was diagnosed. And these two consecutive middle-of-the-night ER visits this week were her (and our) first as well. Let me tell you, we don’t want to repeat any of this and those of you with kids who go through this on a regular basis we feel for you immensely. This is not fun for anyone.
Thanks for checking in and for all your continued thoughts and prayers. We’ll keep you posted as to how this week treats Katie.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 24 days
Friday, April 22, 2005 11:37 PM CDT
Thanks for checking in on Katie. Unfortunately, this time no news is not great news.
Katie’s doing fine, but she was admitted to the hospital on Friday, April 22, 2005. She has a bacterial infection (streptococcus pneumoniae) and was started on IV antibiotics early this morning. She’s been feeling good most of today and before she got the IV, she was bouncing around the room we were in the ER – spinning the examining stool ‘round and ‘round, building a tower with blocks we brought along, coloring pictures, and just babbling up a storm. After she got the IV she finally settled down to take a nap before the sun rose.
To make a long story short Katie started feeling blah on Monday, April 18. She got a slight temperature that evening, but it went away overnight. On Tuesday she had a checkup at the pediatrician who gave her a clean bill of health with clear ears, lungs, and throat. She had a usual busy Tuesday and seemed like she was back to herself. Wednesday night around dinner time, the fever returned and spiked to 103 under the arm by midnight.
Kevin then took her into the ER at the University of Chicago at 12:30 am after consulting with the on-call oncologist. In the ER, they took blood to get counts, take blood to see if any bacterial cultures would grow in the next 48 hours, and give her a preventative antibiotic. They released her at 5:30 am and she and Kevin arrived home at 6:30 am where we all got about a two hour block of sleep. (I had stayed home with Christian that night, but I couldn’t sleep very well and Kevin kept calling with updates anyway.)
On Thursday everything seemed to be looking better. Katie was feeling good and we spent a good portion of the afternoon outside. We went for a walk and went to a playground where Katie tried out every piece of equipment including crawling UP the big twisty slide several times—not using the ladder, but shimmying up the slide by pulling herself up! We had a pretty uneventful evening and Katie was a bit clingy and not too hungry for dinner, but nothing out of the ordinary.
At 10:45 pm on Thursday night the ER doctor called to say that cultures had indeed grown in the blood samples that were taken a little less than 24 hours ago. She said that it was likely that Katie would need to be admitted to start antibiotics immediately and would call the oncologist on call to confirm. Within minutes the ER doctor called to ask us to indeed come in to the ER to get admitted. I left the house with Katie at 11:15 pm along with our suitcases of clothes, toys, books, toiletries, and food. (Fresh fruit seems to be unavailable in hospitals so we bring our own!)
We got to the ER at the University of Chicago at 12:15 am on Friday. We finally made it to her room at 5:00 am on Friday. The upside is that they identified the bacteria very quickly, the bacteria is a common one that can be treated relatively easily, and she doesn’t have to be on a super-strong antibiotic. And, since her ANC is super-duper high (7900 as of Friday morning) she isn’t very susceptible to pick up other bugs and her doctors are comfortable releasing her from the hospital, provided that the blood that they took today won’t continue to start growing more bacteria.
So, we are hopeful that she can be released on Saturday, April 23 from the hospital. If this does indeed occur, she will have her port accessed for the next week and she will have a home nurse come once a day to administer the IV antibiotic for a week. We are hopeful that she can come home tomorrow! She really wants to come home and was bummed when I took Christian home this evening and she had to stay at the hospital. (Kevin had come to the hospital at dinner time with Christian. He is staying overnight with her tonight.)
Needless to say, I haven’t had much sleep since Wednesday night…so with that I’m going to bed and will update as we know more. Thanks for keeping Katie in your thoughts and prayers. We appreciate it and know that she benefits from all the prayers and positive thoughts sent her way!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year and 25 days.
Wednesday, April 13, 2005 9:00 PM CDT
Thanks for stopping by to check in on Katie. She’s doing great. Her last clinic visit was on Friday, April 8, 2005 and she handled this quick visit quite well. Her counts look good, her intermittent cough isn't anything but annoying, and her meds all remain the same dosage. She has gained almost a pound over the last month and maybe grown a centimeter on the official stats. Kevin took her in and she was pretty patient for almost everything. She still refuses to let anyone look in her mouth though….
This morning was the last dose of steroids—thank goodness! She’s been hit a bit harder with the steroids this time around. She is more tired and more matter of fact. Today she got up and declared at Spielgruppe that “Ich gehe nach Hause” (or “I’m going home”) and put on her socks, shoes, and jacket and stood by the door to leave, waiting for me to collect everything and say our goodbyes. She’s been taking a few more naps than usual and is also just more irritable. She tends to focus on one thing (“I want more cheese”) and not lose focus on that one itty bitty item until she gets more cheese, even if she ends up not eating it. There are battles we have to just let go to keep the peace during the steroids pulses. We’re glad we’re done with the steroids until her next clinic visit on Friday, May 6, 2005.
Katie’s been feeling great though besides the time she’s on steroids. Spring weather has suddenly sprung here and we’ve had more and more opportunities to go to a local zoo, play outside with her outside toys, go to the playground, and just linger outdoors lately. She loves it, as we do! She’s figured out how to pedal her little tricycle and can power herself down the driveway and a little down the sidewalk. We also bought her a bicycle helmet and she quickly figured out how to power her bicycle with training wheels down the driveway and along the sidewalk. We now go for bike rides down the street and around the circle and back again! She loves it and we love that she’s getting fresh air and exercise!
We also took the wagon out and both Katie and Christian took a short jaunt in it. Christian loved the ride though I was walking backwards as I was nervous he’d lean over too far or just bounce out. Why don’t they put seatbelts in wagons?! : )
The highlight this past weekend was hooking up the bicycle trailer to my bike. We took Katie for a spin around the neighborhood with a stop at the playground and she loved the ride! She asks everytime we go in the garage now, “Can we go for a Fahrradtour?” (or “Can we go for a bike ride?”) We also got Christian a bike helmet and got him in the trailer. The two of them loved it, though it is a bit cramped. We are hoping to get out a bit with them and maybe have a picnic somewhere in the midst of a bike ride.
The crowning moment for Katie came a couple of weeks ago in terms of her physical agility. We went to one of Christian’s friend’s, Charlie’s, birthday party. She found the small ball pit and would climb up the stairs to the edge and then count, “1, 2, 3!” and leap up and off into the ball pit. She also checked out all the other equipment for the hour plus time we were there and enjoyed every minute of it. She also loved this little trampoline with a handle on it to bounce, bounce, bounce. She was thoroughly enjoying herself.
The best moment was when the supervisor of the equipment/facility asked us how old Katie was. We told her 2 ½ and she told us that Katie has really good coordination and balance to do all she does for her age. That was so nice and reassuring to hear. One, this woman probably sees a lot of kids and knows the differences between the ages and what they can and can’t do. Two, this woman probably had no idea that Katie was diagnosed with leukemia a little over a year ago and is still undergoing treatment. Three, we always worry about the physical (and mental) developmental effects that treatment has on Katie so when someone mentions that she’s doing great physically we really latch on to that observation knowing that so many kids have pain, limited strength, muscle problems, dexterity issues, and other things which can limit their physical antics. Obviously, Katie is not letting anything affect her and she pushes and plugs along to be a typical active and boisterous almost 3 year old!
We’ve also been busy with Easter and Christian’s first birthday. Easter was great fun for the kids. We colored eggs, went on an Easter egg hunt in the neighborhood, and indulged in Easter basket goodies—candy and toys. Oma and Oma Carole came to celebrate the holiday with us and Katie really enjoyed the lamb cake that Oma Carole made. Now when we mention a get together with Oma Carole, Katie asks, “Will we have lamb cake?”
We’ve also indoctrinated the kids into thinking that cake is something we have all the time. We first did Christian’s birthday on his actual birthday, April 1, just as a family, all of us eating our own cupcake. Which, by the way, Christian devoured the thing until we took it away. (For those of you who remember or were there, Katie wouldn’t touch cake for her first birthday!!) Then on the 6th we had a Spielgruppe birthday party for Christian and then had ice cream cake. And, again on the 10th we had Oma and Oma Carole over for Christian’s family party and had cake again… Finally, tomorrow, the 14th, we’re having a friends party…and you guessed it, another cake! We’re going to be caked out, except for the fact that Kevin’s birthday is on the 19th. Maybe I’ll make a cheesecake instead just to be different! : )
Christian is enjoying being one year old. He holds up one finger when you ask him how old he is. He is officially a big guy too, as if we didn't know that already. His one year old stats from his check up last week: 30 pounds, 8 ounces and 33 1/2" inches tall. The pediatrician said that he's about the size of an average 21 month old!
He has added to his repertoire of words lately, “mama,” “dada,” “bye-bye,” “dis” (for “this”), “bwub bwub” (for fish), and a roar for bears/lions/tigers/horses. Yes, he still roars when he sees a horse. We’re working on the neigh sound. And, on his first birthday, he took his first few unassisted steps! He has just started walking away from things and doing steps on his own, so it won’t be long until he starts running around chasing Katie.
Katie’s language continues to grow daily as well. She is amusing us with various thoughts and observations. Today we were sitting at the kitchen table looking out the window when she saw a cardinal (a daddy one – red – for you birdwatchers out there) that flew from one tree to the next. Then she just started talking. I grabbed the back of an envelope and started taking notes of our conversation.
Katie: “Remember there were a big coyote in my backyard.”
Amy: “Yes, did you see it?” (There was a coyote that walked through our yard Saturday afternoon; she and Christian were inside and they didn’t see it, just heard about it from the neighbors.)
Katie: “Normally coyotes eat potatoes and bread.”
Amy: “Really?”
Katie: “Cardinals don’t eat hedgehogs.” (Katie is obsessed with hedgehogs though I think the only place we’ve seen one is at the zoo!)
Amy: “Uh huh.”
Katie: “I can’t play baseball in my backyard. There were too many raccoons and too many chickens.” (Obviously I’m living in another dimension than Katie; we haven’t seen any raccoons in our yard since we moved here five years ago and well, the chickens, that’s a long story, but we don’t have any in our backyard.)
Amy: “Really? Where was Mommy when you wanted to play baseball.”
Katie: “Mama and Katie ask coyote what’s wrong. Then Katie rode on the back of the coyote. Katie haelt fast (held on tight) on coyote’s back and we went hop, hop, hop.”
Then the phone rang. Wouldn’t you have loved to have heard the rest of her story!?!? We’re trying to figure out if Katie has dreams and is retelling us these stories from the night before or just makes it up on the fly. Regardless, we’re entertained with exchanges like this regularly.
And speaking of various critters, fish are Christian’s favorite. He loves them in the bath tub, the stuffed one he has, and now the live one we have living with us. Yes, we’ve added a new member to the family! We have adopted an orange fancy goldfish who Katie christened “Rolie Polie Olie.” (For those of you without little kids, RPO is a Disney creation. Our little fish has no resemblance to the cartoon robot though.) We thought that the fish was going to be called “Honig” (or “Honey”), but when we went to get him at the pet store, Katie started calling him Rolie Polie Olie. The kids love watching him as he sits on a small tank on our kitchen counter. So, he gets company three (or more) times a day when we sit down for meals.
Thanks for checking in on Katie. As always, we appreciate all your thoughts and prayers for all of us!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 1 month and 3 days.
Friday, April 1, 2005 8:58 AM CST
Thanks for stopping by to check in on Katie. She's doing great! In fact, she announced as she was going downstairs for breakfast, "Today we sing Happy Birthday to Christian!" And, when we got downstairs, she sang Happy Birthday to him five times!! She did this on her own, unprompted.
So, Happy FIRST Birthday Christian!
Thanks for checking in on Katie. We appreciate all your thoughts and prayers for all of us!
Love,
Amy, Kevin, Katarina & Christian (AKA The Birthday Boy!)
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 1 month and 15 days.
Tuesday, March 15, 2005 11:46 AM CST
As many of you may realize, on March 16, 2004 our lives changed forever when Katie was first diagnosed with leukemia from a single blood test ordered by her pediatrician. It's hard not to reflect on our lives before that day versus after that day. Too many of you know what I'm talking about. I still cannot look at a photo of Katie before March 16, 2004 and have all sorts of unnatural questions run through my head. "Can you *see* the leukemia beginning in her here?" "Were there signs of this to come when she was really little?" "Would she be a different little girl if she weren't on this path?" Instead of rehashing our lives on diagnosis day, the days leading up to the diagnosis, the craziness of life immediately after diagnosis while in the hospital, or how blissfully ignorant we all were of the world of cancer, I decided to review the past year in a different manner.
It's well past that time to reflect on 2004 and list our resolutions for 2005. In fact, who out there is still keeping those resolutions?! As always, I'm still a few weeks (months?) behind... I recently was reading a little blurb about reviewing the previous year and making personal goals for the next year. Of course, I had to put it in context of Katie (and Christian) since I've declared (with Kevin's blessings) myself CEO of the household realm.
Many people have lamented to us how 2004 was such a horrible year for us and we were wished a happy and healthy 2005. I agree that 2004 wasn't a pleasant year...at times. However, we cannot overlook the giant (literally!) fact that it was the year that our second child, our first son, Christian, was born. Reflecting back, 2002 was the year that Katarina was born. It was a great year. A life-changing year. A momumental year for us to welcome our first child, our first daughter, into this world. We cannot lessen the impact of Christian's arrival by saying Katie's leukemia diagnosis overshadowed it. Christian deserves to have 2004 be his celebratory year especially since unknowingly he has brought Katarina and us lots of joy...and is a very good distraction from the seriousness of leukemia. He also reminds us that life goes on. There are bottles to clean and refill, (more) dirty diapers to tend to, a different cry to comfort, another little person who needs us just as much as Katie.
Do we have regrets and disappointments about 2004? You bet we do. Can we change them? Nope. Is it worth dwelling on them? Never. All is a learning experience and nothing is a failure. We've learned a lot in the past year--more than we wanted to or expected to.
What did we learn about ourselves during the past year? Too much? In some ways, yes. In other ways, we're still learning even more about ourselves and our children. Katie's a resilient little girl. Christian appears to be just as independent and stubborn as his older sister. Since we can't change things we just accept them and plod along and try to make every day count. We take all the uncomfortable things that come along with us down the path we are forced to travel and try to make them tolerable and bearable. We find humor in the strangest things. It keeps us all sane.
How did we get through the past year? Beats me. I don't think we looked at the big picture. It was too overwhelming. We didn't (and couldn't) plan too much ahead. We took it all day by day. We did it though. And, we will continue to march along together, year after year. We still tend to take things day by day and enjoy them fully as you just never know what lies up ahead.
We haven't been limited by the past 12 months and what Katie's diagnosis has meant. As a family, we continue to learn and grow. We learned what true support really is. Support -- in so many forms -- came from surprising places and we've strengthened many friendships and made some wonderful new friendships along this unexpected road we're on.
We learned to overlook the slights, the ignorance, the uneducated. What do we expect people to say to us? What do we expect them to do for us? What would we have done if we were on the other side of the fence? We don't have the answer and so we don't expect anyone else to be "perfect" around us. No one knows where those eggshells or hot buttons are and even we, ourselves, don't know where the eggshells are with each other on any given day! Forgiveness goes a long way. There is no perfect thing to say and no perfect act to perform. Continue to be yourself with us. Since we've never been down this path before either, we have a lot of learning to do ourselves!
It's been a long year in some ways, and a fast year in others. We've had a lot to deal with, but we've gotten through Katie's first year of treatment. And, we're right on the cusp of Christian's first birthday. So...help us celebrate two monumental events and thanks for sticking with us this past year. Without your support through thoughts, prayers, cards, calls, visits, food, packages, e-mails, guestbook entries, and everything else in between, we surely wouldn't be where we are today.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 2 months and 1 day
Friday, March 11, 2005 11:31 PM CST
Katie's clinic visit today was short and sweet. She couldn't wait to get out of there despite getting a number of stickers to try to sway her otherwise.
All her blood counts are looking good and the doctors all gave her a thumbs up. The steroids started today and now we brace ourselves for the next five days....
Thursday, March 10, 2005 7:28 AM CST
Thanks for stopping by to check on Katie. She is doing great! Her next clinic visit is Friday, March 11, 2005. It should be a “short” visit as she is “just” getting her blood counts done and a shot of vincristine in her port. Oh, yeah, she starts steroids on Friday night too. Fun, fun, fun for the next five days! I better finish this update quick and get out to the grocery store to stock up on cheese, chicken, strawberries, and crackers.
We are eager to see what her official height and weight are at this visit. She’s been growing (and eating!) like a crazy woman and it seems like she’s going to go from size 2T clothes straight into 4T and size 8 shoe to 10! I’m not kidding. We go to put clothes on this girl and we are clearing out more than she has to wear anymore. I’m not complaining though. She didn’t grow a stitch (well, maybe a ½ centimeter?) during the first eight months of treatment so she’s got some serious catching up to do.
Oh, the language/comprehension/questioning continues at full force. She is now wanting to know when we can go to the beach. We keep telling her when it gets warmer and/or when spring arrives. So, she keeps asking, “Is it warmer yet?” “Is it spring yet?” Unfortunately for all of us, the answer is still no and no.
But, once it gets warm enough, we’re hitting the sand. We’ll just make sure that Christian doesn’t eat the sand. I know him well enough and I know he’s the type of kid who would try it…and probably even like it! Speaking of our little man, he’s continuing to build his confidence and balance to take that first step. He does a little bit more on his own each day to remind us that he’s going to be walking really, really soon. And, he’s suddenly into books. He will pick up a board book and point to the pictures and “say” things. He also seems to repeat words back to us. You really can’t mistake him saying “nuzzle” now can you? His vocabulary really only consists of “mama” and “dada” right now.
Katie’s also interested in going for a “slide ride” also known as a sled/sleigh ride. She is very disappointed that there isn’t enough snow (any actually) to go for a ride and keeps reminding us. Here’s a recent exchange.
Katie: “I have an idée.”
Amy: “You do?”
Katie: “Maybe later we go for a slide ride when there’s more snow.”
Amy: “Oh, Katie. There won’t be more snow later.”
Katie: “When spring comes they’ll be more snow maybe? Then they’ll turn the fountains on.”
Amy: “The fountains?”
Katie: “Yes, the fountains at the zoo. Katie want to see the fountains at the zoo.”
Amy: “You are a sweet pea!”
Katie: “I am?”
Amy: “Yes, you are.”
Katie: “No, I’m a cracker baby.” (While eating goldfish crackers, of course.)
And, she’s going to be a great Ebayer we think. We were in her room and she looks at the clothes hanging in her closet. “This is my store. I sell shirts.” She picks up one and moves it to hang differently on the rack. Takes another to do the same. We asked her, “How much are your shirts?” She answered, “Forty-eight six.” (This is her universal favorite number. She will tell you the same number if you ask her what time it is too.)
This past week’s highlight included a trip to yet another zoo, Lincoln Park Zoo. Kevin and I had realized we hadn’t been to the zoo in Chicago since 1991! So we decided we should visit it at least once every 14 years and packed up the kids for a mid-winter jaunt. The kids loved it. The highlight of course was the rhino sighting followed by the two polar bears. The best part (we thought) was the Regenstein African Journey. This exhibit allowed us and the kids to see a lot of animals/fish/birds up close. And, Katie got a little bit of a taste of Africa that she so wants!
Katie also had a fun outdoor day on Sunday. The weather was (gasp!) almost spring like so she went to the playground, went for a stroller ride, played with every outdoor toy she has (cars, wagon, balls, chalk, bubbles, etc.). She was living it up. Too bad we woke up on Monday to find grey skies, blustery winds. and temps back in the 30s….
As always, thanks for checking in on Katie. We all appreciate the thoughts and prayers for her and for all of us!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 2 months and 6 days
Thursday, March 3, 2005 7:54 AM CST
As always, thanks for checking in on Katie. She continues to do well and dodge all those horrible bugs everyone seems to be getting and then getting again and again and again! We are hopeful that once the temps rise to a slightly tolerable level, everyone can open up their doors and windows and let the wind sweep out all these nasty illness causing germs. We can hope....
Katie's doing great -- talking up a storm, continuing to make very astute observations along with some bizarre ones. Making us laugh a lot, smile a lot, and just be in awe of how much she's picking up from every possible source, good and bad!
Her new word of the week is "gorilla bar." I bought some granola bars and I've always eaten them around her. She asked for one the other day, "Can I have a gorilla bar?" It's one of those things (like "padudu" for pacifier) that's going to stick.
She's still obsessed with going to Africa. We recently had a conversation about flying. She's never been on an airplane and is testing the water as to what an airplane is like, what is appropriate to bring along on a trip, and what animals she can count on seeing if we go to Africa.
Katie: "Mom, where do elephants live?"
Amy: "Africa" [Yes, yes, I know that they live in Asia too. I didn't want to throw too many facts at her just yet.]
Katie: "Giraffes?"
Amy: "Africa."
Katie: "Polar bears?"
Amy: "Arctic."
Katie: "Arctic. That's far away. Have to take airplane." (pause) "Airplanes have wheels?"
Amy: "Yes. They have wheels so they can roll to take off. Then when they are in the air, the wheels fold up underneath."
Katie: "Christian cry on airplane."
Amy: "Do you think Christian will cry on the airplane ride?"
Katie: "Yeah. We can't take bookcases on the airplane."
Amy: "We can't take bookcases on the airplane?"
Katie: "Bookcases too big. I take [Green] Bear and bag." (illustrates by hugging herself; pause) "I keep bear warm. No take Mama Bear." [Note to the unfamiliar: Green Bear is her prized "go everywhere" bear; Mama Bear is the same bear in a supersized form that lives on her bed.]
Amy: "Mama Bear is too big."
Katie: "Yeah. Mama Bear too big."
She's obsessed with traveling as you can see. So...we have to figure out when we can go on safari with the kids. The highlight last week was me taking the kids to the zoo in place of a trip to Africa. I bundled them up and we ran from building to building. Let's clarify. I ran; they rode in comfort in the stroller. The bad thing was that each building was about 98 degrees with 90 percent humidity so you roasted and got all steamy in each building, then shocked your system going back outside to the 35 degree temps!
The kids loved it though. Katie was asking to see the tapir and as luck would have it, he was the most active I've ever seen. He was swimming, snorkled a little with his short snout for our entertainment, and then got out to greet us. He watched us and then showed us how he scratches his ears using the edge of the wall. We also saw one elephant who humorously decorated the top of his head with hay for us. Of course, we saw the rhinos, but they were all lazy and sleeping!
And, we trekked over to see the bison, zebra, and giraffes. On the way out, we warmed up in the reptile house and Katie got her fill of alligators, frogs, snakes, turles, and caimans. Yes, we are into lots of animal books and she asks to see these "off the beaten path" animals like tapirs and dwarf caimans. She is also fascinated that alligators will eat people. One of the books we read mentioned that alligators can and will eat people and Katie hasn't let us forget that since!
I guess what I try to illustrate in sharing our conversations and adventures is that Katie continues to grow--both physically and mentally--all while still on treatment. We were worried (and still are) about the effects of all the drugs she has to take. However, watching her absorb both English and German and use both appropriately, figure out how to put together puzzles, learn how to play memory games, "teach" her brother new things, and just explore the world shows us that life marches on quite readily for her.
One of our online friends, Kendrie in Georgia, recently had a journal entry (see her February 19, 2005 journal entry) that outlined what ALL treatment entails while on Long Term Maintenance. We're borrowing (with Kendrie's mom's permission) part of that journal entry to give you a glimpse into what LTM is like for Katie. Katie is in the Long Term Maintenance phase of treatment and will be until May 16, 2006. It's more than most people realize, even those of us in the thick of it since we just deal with things day by day and often don't look at the "big picture." It's pretty sobering.
During Long Term Maintenance, Katie is on 28-day repeating cycles of chemo.
Every night she takes one pill (50 mg) of the chemo drug 6mp also known as mercaptopurine. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite. For best effectiveness, this drug must be taken 2 hours after last eating or drinking. So, every night dinner has to end at 6:30pm and none of us have any snacks in front of Katie, forgive Christian his bedtime bottle.
Every Friday night, she takes five Methotrexate pills (12.5 mg), an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches. We've also noticed that the fatigue hits her the worst on Saturday and Sunday when we are most likely wanting to get out and do things as a family.
Four times each weekend (Monday am and pm, and Tuesday am and pm) she takes a dose (1 teaspoon) of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts. This liquid med is grape flavored and we think Katie actually likes it!
For the first five days of each 28-day cycle, she takes the steroid Dexamethasone; one pill (2 mg) each morning and one pill (2 mg) each night. Dexamethasone is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes, increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability.
Repeat, she's on this steroids for five days out of every 28. This five day span of time has earned itself a special symbol on our calendar, a big asterisk. That means don't try to do anything new during that time, don't invite anyone over, don't pay to go anywhere like a zoo or museum (in case she has a meltdown and we have to leave right then), don't expect the babysitter to be able to handle her, and so on.
While on the steroid, Katie also takes 1 ml of liquid Pepcid to prevent stomach problems. The steroids can tear up your stomach and the Pepcid is a preventative.
She still has not learned to swallow a pill or gel cap, so we crush and/or dissolve all her meds and give them to her in a medicine cup. She's a real trooper about it all. From what we understand the 6mp doesn't have a taste and the methotrexate, though it looks disgusting when dissolved, doesn't seem to have a horrible taste to her either. However, the steroid has a bitter, horrible taste from what we've heard. And, miraculously, Katie doesn't even make a face, but takes it without complaint.
Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at clinic. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.
And last but not least, once every twelve weeks she has a spinal tap (i.e., lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can't cross the blood-brain barrier.
I also might add that before the spinal tap, she cannot have anything to eat or drink for 12 hours before the procedure. We normally send Katie to be with a sippy cup so on the nights before spinal taps, she has to drink up before she goes to bed. Then, in the morning, I wolf down a granola bar and a glass of milk (out of her line of sight) and she then continually asks during the long 51 mile ride to clinic, "Can I have some cereal?" "Can I have a banana?" "Can I have water?" "Can I have a cookie?" Try reasoning with your two year old that she can't have anything to eat or drink until after we're "done" at clinic. As soon as she's able to sit up on her own after the spinal tap, we tear into our brought-from-home bag of goodies. She will wolf down an amazing amount of food after going without food and water for 12 to 15 long hours!
That's pretty much it in a nutshell; the maintenance portion of Katie's treatment protocol. The first eight months of therapy were considered "intense." This maintenance portion is less harsh, but lasts until May 2006. So, two years and two months total. If Katie were a boy she would get an additional year of maintenance therapy due to the risk of testicular relapse.
So...Katie's feeling good and doing well and acting great despite all this stuff that is going into her on a regular cycle. And, to those who keep asking hopefully, no she's not done with treatment yet. And, whether you wanted to know or not, you now learned in excrutiating detail what LTM is exactly!
Christian is doing great. His 11 month birthday was this week and he hasn't started walking on his own yet, but it's going to happen very shortly. He's getting more balance everyday and is taking more risks in going from table to couch to other items. We'll keep you posted when that first step occurs!
And, thanks for checking in on Katie regularly. We all appreciate the thoughts and prayers on her behalf.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 years, 2 months and 13 days
Sunday, February 20, 2005 11:33 PM CST
Thanks for stopping by to see how Katie’s doing. We are happy to report that she made it through the five days of steroids pretty well. The moodiness and crankiness was manageable. And, the extreme hunger never really kicked in unless you count the past few days. We think maybe she’s bulking up for another growth spurt as she’s been eating like a horse. She just continues to plug along through Long Term Maintenance. Her next clinic visit is on Friday, March 11.
We decided to keep her home from her school program on Monday while she was on steroids. She seemed extra tired last weekend and we never know how she’s going to act at school while on steroids. We’ve actually never sent her to school while she’s on steroids, and we’re not sure whether we will try that -- ever. I just fear I’ll drop her off and then return home only to get a call that she needs to be picked up as she’s overly clingy/cranky/ornery/tired/restless/hungry – choose the adjective that would make her presence in a classroom the most disruptive.
Katie’s language skills – and humor -- continue to amuse us. We have to share a few incidents from this past week.
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Katie goes to bed and seems a little restless. We are talking to her and hoping she’ll just relax a bit and close her eyes.
She asks us, “Bitte [please] sleep downstairs?”
Amy: “Katie, you can’t sleep downstairs, there are no beds downstairs.”
Katie, without a moment’s pause: “Bitte, carry my bed downstairs.”
This then leads to a discussion of the purpose of bedrooms and other various rooms in the house and why we don’t cook in the living room, don’t eat in the bathroom, etc. I am sure that room usage “rules” we quickly outlined tonight will come back to haunt us.
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Katie and I were out shopping and came home. I reminded Katie to be quiet when we got in the house as Christian and Kevin might be sleeping.
Katie: “Why Daddy sleeping?”
Amy: “Because Daddy has a cold and doesn’t feel that great.”
Katie: “Daddy doesn’t feel well?”
Amy: “Yeah, he’s sick.”
Katie: “Daddy needs to drink lots of water to feel better.”
~~~~~~~~~~
And, a day or so before this, Kevin had a conversation with Katie about how he had a cold and was sick. She promptly told him, “Daddy, go see my doctor. Go see Dr. Nachman.” Kevin explained that her doctor was for kids…and for illnesses bigger than the common cold.
~~~~~~~~~~
Katie also has been using the word “actually” correctly. She floored me when she used it for the first time with me. I just never imagined any two year old using the word “actually.” The sentence she used it in was “That is your ring actually.” She was handing me my ring which was sitting on the bathroom counter after a discussion about various things sitting on the bathroom counter and what belonged to who.
Christian is also his usual vocal self. He says the same phrase (sounds?) when he finds something, grabs something, or just arrives at something interesting while cruising around. We both think he says, “I did it!” But, who really knows. He is working on perfecting his “neigh” though. We visited a local farm, Kline Creek Farm this weekend and saw some horses. He kept roaring or growling when he saw the horses, so we’ve been working on his “neigh.” (The main reason we went to the farm was to see lambs as all the babies are born in February and March. We saw a ton of them and Katie loved it.) Christian continues to crawl and cruise constantly. We’re still not sure if he’ll be walking around by his 11 month birthday like Katie did.
We also got around to doing the monthly update on the kids’ websites. If you have a moment, see some new smiles and antics and be sure to check out the photographs that Katie is taking. No cropping, no editing; these are untouched! Her photos are the originals that she took with her own keen eye. I think she’ll have a photography portfolio before she’s five years old!
And, the countdown to 20,000 visitors is on! The 10,000th visitor to Katie’s site -- and the winner of the one-of-a-kind original fingerpainting by Katie -- was our Canadian friends Chloe & Hannahka. Runners up are our friends Kara in Ohio and Jaclyn in New Jersey. Feel free to stop by their websites and say hi!
And please remember, no matter what number visitor you are and whether you leave a message in the guestbook or not, we appreciate your continued concern for Katie and our family. The thoughts and extra prayers said for her continue to work!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 2 months and 27 days.
Tuesday, February 15, 2005 8:18 PM CST
No news is good news. Katie's spinal tap from Friday is clear. Hope you all had a very Happy Valentine's Day. The kids here are enjoying their new books, tiny toys, and candy! : )
Friday, February 11, 2005 11:27 PM CST
Thanks for checking in on Katie. She continues to do well, though she still has a bit of a cough. Her clinic visit today went well--and fast. She was very, very upset when we didn’t do the usual routine there though. When we get to clinic they usually “triage” the patients in a small exam room—they take Katie’s temperature, blood pressure, height, and weight and, most importantly, Katie gets a sticker when she’s done. Well, there wasn’t a nurse available to do this in the small exam room so they sent us straight to the special procedure area (spa) to get the stats done instead. Katie did not like this one bit as it deviated from the usual routine. So she had a meltdown. A loud, kicking and crying and flailing meltdown.
She finally calmed down…when she got the sedative for the spinal tap. When she was recovering from the grogginess of the sedative she was back to her usual self and has remained that way the rest of the day, thank goodness.
The initial results of the spinal tap were all clear. We get the final results on Monday. Her bloodwork counts are all in acceptable and expected ranges, so no surprises there. She’s scheduled for her next clinic visit on Friday, March 11. She continues to march through Long Term Maintenance pretty easily—knock wood.
The big, literally big, news is that she’s grown about another inch in the past month!! She’s now 37 ½ inches tall!! And, because she’s bigger she gets to take a larger quantity of medications. That means a higher dose of steroids. Yuck! Speaking of which, they start tonight and end on Wednesday morning. Five days of ‘em. Hope we all survive unscathed….
So, since she started Long Term Maintenance she has grown a solid 2 ½ inches! We thought some of her pants were starting to get short on her and we can now say that our assumptions are right and she’s growing once again. Christian is going to have a harder time catching up to her in height now as she’s growing again!
Oh, another big thing this week is Katie is suddenly obsessed with going to Africa. We have a little story CD about this traveling rabbit named Felix. Well, he goes on safari to Kenya, Africa and sees lots of interesting things. Now Katie wants to go there. Some fun excerpts from this week’s conversations:
Katie is looking out the window during breakfast and out the blue says that there are no animals outside. She said there were no rhinos, no lions, no giraffes, no raccoons. I said there are no rhinos or giraffes or lions here as we aren’t in Africa. Then she says, “Bitte, go Africa? It’s far away. Go on an airplane.” [Bitte=please] She also asked if there were sharks in Africa.
Breakfast conversation while I’m putting together my own breakfast:
Katie, to Christian: “Christian, do you want to go to Africa? There are lots of animals there. There are lions there. Lots of giraffes. Lots of zebras. Two bison. Two rhinos. Two gorillas. Eisbaers.” [Eisbaer = polar bear]
Amy: “Katie, there aren’t any polar bears in Africa. They are in the Arctic.”
Katie (singing to some tune): “There aren’t any Eisbaers in Africa. There aren’t any Eisbaers in Africa.”
Katie, finished singing now, to Christian: “Do you want to see lion cubs?” She’s obviously trying to sell him on going to Africa to see all the cute animals there!
It goes without saying that Christian would happily tag along to Africa or where ever we go. He’s eager to get running, literally, and is now pulling himself up on everything and anything, stable and unstable, and cruising along anything that will hold him as well. He is going to take off any day now!
Don’t forget, sign Katie’s guestbook and let us know what number visitor you are (find what number you are at the bottom of this page). If you are special visitor 10,000 Katie will send you a one-of-a-kind finger paint artwork creation!
As always, we appreciate you checking in on Katie. Everyone’s prayers are working on her behalf.
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 3 months and 5 days.
Monday, February 7, 2005 10:45 PM CST
Okay, okay, we're nearing the 10,000 hit mark on Katie's site. (See the number at the bottom of this page.) Sign the guestbook and let us know what number you are! If you are number 10,000 Katie will send you a one-of-a-kind finger paint work of art!
Thanks for stopping by to check on Katie. She is continuing to do well. However, I should not have said anything about escaping all the illness bugs. On Friday she started feeling a bit warm and this continued for about 24 hours. She never really had a high fever (99.5 was about the highest), but whatever it was turned into a small cold and now an annoying cough that rears its noisy nature in the evening mostly. She has a clinic visit on Friday, February 11, so she’ll get checked out then, but most likely it’s “just a virus.”
The snow is almost gone around here…but soon to be replaced by some new stuff due tomorrow night. The groundhog saw his shadow here on February 2, but regardless, that still means winter. Katie doesn’t mind. She loves tromping into the remaining snow piles, pointing out snowmen or the remains of them, and just having a grand old time in the icy stuff.
The highlight this past week was a short day trip to visit Oma. We took advantage of the mild weather (50 and sunny) and went over the river (a few of ‘em) and through the woods (well, a few stands of trees maybe, but no real woods) to Oma’s house. Katie and Christian enjoyed spending the day with Oma. Christian loved pulling every beanie baby by its tag and trying to taste it. He also has an affinity to find glass things and try to knock them over! We all ventured out for a trip to a local playground and braved the spongy, muddy grass to get to the swings and slides. Katie and Christian had a blast as it feels like ages since it was warm enough to go to a playground. We then got the kids ready for bed, tucked them into their carseats, and turned around for the ride back home. The kids were zonked after their whirlwind day.
Sunday was somewhat mild, so we went to a local zoo on Sunday. Katie enjoyed the horses and donkey the best. And, the one friendly horse (who you may recall--and Katie mentions everytime we see this horse--chewed on Christian's car seat when he was still sitting in one in the stroller) this time came and nibbled on Christian's mitten. We think he has a good friend at the zoo!
Christian is really into everything. Now that he’s crawling he makes a bee-line for all forbidden things (potted plants, the shelf of DVDs, Katie’s toys with lots of teeny-tiny pieces. etc.) And, once he arrives at something interesting he “tests” it to see if he can pull himself up on it. And, another thing we have noticed is that Christian loves to put EVERYTHING in his mouth. The funny thing is that when it’s time to eat, he then clamps his mouth shut! I guess he gets all his nourishment from all the toys he licks all day….
We appreciate you stopping by to check on Katie and us. Keep those prayers coming for Katie as they are working!
Love,
Amy, Kevin, Katarina & Christian
COUNTDOWN TO OFF-TREATMENT (May 16, 2006): 1 year, 3 months and 9 days.
Sunday, January 30, 2005 10:40 PM CST
Thanks for checking in on Katie. She continues to do very well and (knock on wood) escape all the bugs that are floating around everywhere! So…as for Long Term Maintenance, Katie seems to be handling it fine and we *only* have to get through the next 1 year, 3 months and 17 days. (Her end of treatment date is May 16, 2006.)
The funny thing is that even though her next clinic visit isn’t until February 11 and we have one month between visits, the time seems to fly by so fast! In other words, where did January fly off to?!
Katie has been enjoying the snow. She loves to go sledding (being pulled is the preferred method) and we’ve been doing that whenever the temperature allows. The highlight last week was a horse-drawn sleigh ride at a nearby forest preserve, Danada Equestrian Center. We had gotten at least 6” of snow on Saturday and on Sunday the sun was shining, the snow was settled, and the temperature was, well, tolerable with lots of bundling up. Katie loved seeing the horses, hearing the bells jingle on their reins, and being jostled about on the modified hay cart now being pulled by two strong horses. Christian also enjoyed the ride, but he was ready for a nap after all the hub-bub out in the fresh, crisp air!
Speaking of Christian, he’s officially on the go! He mastered crawling forward (finally!) last weekend and now he’s into everything. Unfortunately for Katie, that means all of her stuff! She dumped out her little grocery cart of all its food onto the floor. He heard the commotion, saw the pile of colorful plastic on the floor, and tore off after what was sure to be hours of fun! Katie saw him racing straight toward *her* stuff and she ran to her pile of toy food and in a frantic act to “save” her things, started throwing her favorite pieces behind the pack and play where she figured he couldn’t fit to access them! It was quite amusing to watch!
Katie is quite the little Mommy to Christian. Whenever he puts something in his mouth (besides food), she tells him, “Christian, not in the mouth!” Whenever he starts crying she pats him and says, “Christian, you okay!” Whenever he screeches really loudly, she says, “Christian, not so loud.” I guess what is interesting is that I think she’s really mocking both my and Kevin’s parenting. What is somewhat comforting is that the volume she uses to say things, the tone she uses, and the words are all pretty calm and level. So, it is nice to get a mirror to our skills once in a while to help improve, critique, and change them, if necessary.
Katie’s “kabuz” chronicles continue. Whenever you ask Katie anything anymore, she starts out with her personal “because…” which comes out “kabuz…”
Christian also mastered waving bye-bye this week. He just opens and closes his hands when we say “bye-bye” or “tschuss” to him, but it’s so cute to see!
As always, thanks for checking in on Katie. We appreciate the thoughts and prayers for her and for us as well!
Love,
Amy, Kevin, Katarina & Christian
Saturday, January 22, 2005 11:19 PM CST
As always, thanks for checking in on Katie. She’s doing great and Long Term Maintenance (LTM) is treating her well. She had another quick clinic visit on Friday, January 14, 2005. Fortunately, this time she handled being on the general exam side of the clinic just fine and we were in and out in less than an hour.
The five days of steroids went relatively smoothly and ended on this past Tuesday, January 18. That is one of Katie’s meds that we do the “happy dance” when she gets the last dose at the end of the 5-day run. She seems to be handling them well, but she still is more moody, cranky, tired, tantrumy, whiny, hungry, clingy, obstinate, unpredictable, wild, easy-to-set-off, and simply unlike herself during the stretch she’s on steroids.
Katie doesn’t return to clinic until Friday, February 11, 2005. It is nice to have to do the trip to clinic only once a month now. It’s nice to have our Fridays back.
Christian’s bruiser stats during his 9-month check up this past week: 29 pounds and 32” tall. He’s still off the charts for both height and weight. And, contrary to popular belief, he does refuse food quite often to tell us he’s full. Now that he’s crawling and pulling himself up, he’s starting to thin out a bit. He has great balance and is very eager to get walking – okay, he’d prefer to skip right to running – to catch up to his sister!
Katie is talking a mile a minute anymore. Her comments (or is it commentary?) on everything under the sun are often quite amusing.
“The cats can’t clap kabuz [because] they have paws.”
And, as we predicted, Katie is becoming the master negotiator. We have always bartered with her at mealtime, “Eat your green beans and you can have more pasta.” or “When you drink your milk you can have a cookie.” So…we were stunned when our sort-of on-and-off-again potty-training daughter said to us,
“Wait, wait, wait! One Paz [penguin cartoon] for one poopy.”
We couldn’t contain our laughter on that one! She’ll “give” us a lovely poopy diaper in return for letting her watch one of her favorite cartoons!?!? I don’t think so!
We’re resumed our busy schedule now that the holidays have come and gone. Katie’s back at her one-day a week preschool and Christian started going to a once a week mini-gym class. Katie loves school and looks forward to taking her “pack-pack” and lunch each week. Christian is enjoying the mini-gym class although he’s one of the younger kids in the class and is quite envious that the older kids are all walking to everything that they want to explore while he needs to crawl/roll/scoot or holler to be picked up to what he wants to get to!
We’re also continuing with Spielgruppe (German playgroup), Language Stars (German class), and various playdates with friends, neighbors, and a babysitter. So, the kids are getting plenty of activity despite the fact that we can’t go outside due to the cold weather and, now, tons of snow!
Be sure to check out the new photos in the photo album and also on our website. Enjoy!
Thanks for checking in on Katie. We appreciate the thoughts and prayers for all of us!
Love,
Amy, Kevin, Katarina & Christian
Monday, January 10, 2005 11:35 PM CST
Happy New Year!
Thanks for checking in on Katie! Katie continues to do very, very well. She had a quick clinic visit on Friday, December 17, 2004. Katie did have a minor meltdown that day at clinic as we didn’t have to go into the day treatment area and get a bed which she is used to. We were able to stay on the side with just general exam rooms. The change of location really upset her so we’re going to request that we always go to the day treatment side, even if she only sits on a bed for 10 minutes. It will keep the peace and it’s worth it even if they ask me to change the bed linens before we leave!!
She also went through the 5-day course of steroids right before Christmas and handled them very well. We were glad that they were out of her system by Christmas though!
Katie – and Christian – had a great Christmas. We sort of had the 12 days of Christmas going on here as they opened gifts from December 24 through 31! They were both quite overwhelmed with the whole process, but Katie really enjoyed Christmas this year. And, she helped Christian open many of his gifts and would quickly look over his gift and announce, “Katie share this with Christian!” Not realizing that since it’s Christian’s gift, he’s the one who has to decide to share his new toy! They have been sharing pretty well despite her bold pronouncements!
And, Katie’s picked up a new word, “kabuz.” She has switched the word “because” around and so will tell you, “I can’t do it, kabuz I’m eating.” It’s quite cute and will soon go the way of “wawer” (for water) and “padudu” (for pacifier), but it’s cute to hear nonetheless!
Christian is continuing to grow like a weed. He’s still not crawling forward, but doing every twist, roll, backward scoot, and maneuver to get to what he wants…which is usually some small toy of Katie’s that is not appropriate for him to play with! He is also Mr. Verbal and makes himself heard all the time: “ta-ta-ta,” “da-da-da,” “ti-ti-ti,” “nein-nein,” (no-no) and with others as my witness, we are totally convinced he says a sound that sounds exactly like the word “peek-a-boo” when playing the game with him! If that is officially his first word, it’s much more impressive, but less useful, than Katie’s first word which was “uh-oh!” : )
Katie’s next clinic visit is this week, Friday, January 15, 2005. She’s been doing great so we’re hopeful that this next visit will be quick and uneventful. She does start another 5-day run of steroids on Friday and we’re also hoping that she handles them without incident. Or rather, we can handle her despite any incidents! : )
Thanks again for faithfully checking in on Katie. We appreciate the thoughts and prayers for all of us!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, December 7, 2004 11:06 PM CST
~ ~ ~ Please consider joining the National Marrow Donor Program to potentially help save a life. ~ ~ ~
Thanks for stopping by to check in on Katie. All is well. We’ve been busy with Thanksgiving and all usual things. Katie got through the steroid 5-days pretty well. She had her rough spots, but to be quite honest, it’s hard to tell when she’s being affected by the steroids or it’s the “terrible twos” kicking in. We do know that the steroids exacerbate whatever behavior she does exhibit, be it good or bad. So…she can be extra clingy and lovey-dovey or extra stubborn and resistant.
Alas, her next clinic visit won’t be until December 17 which means she’ll finish up another 5 days of steroids right before Christmas. We’re glad that the holidays themselves aren’t tainted directly by her having to take steroids on those particular days. So, being a few weeks into Long Term Maintenance (LTM) is treating Katie pretty well thus far.
Katie continues to impress us with her vocabulary and observations. We think her brain must be working overtime as she’s eating tons of food, but physically, she is not growing in height or girth. So…we assume all the food is feeding her mind instead.
A while back Kevin gave her quarters to use as play money in her toy cash register. So, she recently was playing with the cash register and came running out to me.
Katie: “Mommy, do you have money?” [for the cash register]
Me: “No, honey.” (I didn’t want her playing with coins around Christian who likes to put everything in his mouth.)
Katie: (with head down, sad) “Oh.”
Katie: (perking up now) “Daddy has money. I’ll ask Daddy!”
I just burst out laughing as it seemed to her that Mommy (who doesn’t work) doesn’t have money. Daddy though, since he works, has money!
Katie also is displaying her preferences more vehemently now. (Terrible twos or medication? Take your pick!) Anyway, she was at dinner with all of us this weekend and we were eating some cake that Grandma had baked. Katie had never tried it, but Kevin was trying to entice her to take just a little taste. He kept pushing and pushing, but was still pretty gentle. She then just yelled, without tasting it at all, “I don’t like this…(pausing for the right word apparently)…THIS CAKE!” Needless to say, she didn’t try the cake at all.
Hmmm. What have we been up to? The usual busy stuff!
Thanksgiving week was very quiet. The weekend before Thanksgiving we went to the zoo with the kids as it was so nice out that we couldn’t resist spending the day outside. As usual, Katie enjoyed the rhinos and all the other critters there. Christian got to see a lot more than usual as I could carry him and point things out while Kevin watched or walked with Katie. Christian really enjoyed this zoo visit! Katie and Christian also went to their church class which they hadn’t been to in a really long time. Katie enjoyed it and got to see the other kids practicing their songs for the Christmas program. Katie knows the two songs, but is too bashful to go up with the group of kids to perform them. At least we have captured on videotape her singing the songs at home.
Katie’s school program and German class was not in session that week, but we did get together with Katie’s friend John. We skipped German Spielgruppe that week. Kevin also took a vacation day the Wednesday before Thanksgiving so we could prep the house and get food together for Thanksgiving since we were hosting it at our house.
The true highlight of the week was the unexpected significant (2 ½ inches!) of snow…that stuck on EVERYTHING on the Wednesday afternoon and evening before Thanksgiving. Bundling up was the worst part, and because of it, Christian stayed toasty warm by staying inside. But, the snow was simply gorgeous (coating the trees like a postcard) and Katie had a great time playing with her shovel on the driveway, stomping in it, and just marveling at it. (She liked snow last year too, but really seems fascinated by it now.)
Thanksgiving was a really nice day spent with Grandma, Oma Carole and Oma Oma Violet. (Oma Oma = Great Grandma!) We cooked a fresh turkey and Katie ate some to our surprise. She also took a taste (willingly) of pumpkin pie as well. Christian decided to take a nap during the entire dinner, so he missed the lively conversation that was lead by Katie. She was sooo patient to sit through the entire dinner with us “boring” adults. We were surprised, especially since she had had the last dose of steroids just about 30 hours before we sat down to eat! We were thankful for Katie’s agreeable nature during dinner!
Thanksgiving weekend was pretty quiet. We got all the Christmas lights hung outside. (Yes, we live in one of “those” neighborhoods where everyone decorates with lights to the point that we have “light peepers” drive down our streets slowly looking at everyone’s decorations.) Kevin and I put up the outside lights while we were ankle deep in snow with melting snow dripping on us from the tree branches and digging through our pockets (with gloves on) to find replacement bulbs for those that had burned out. Regardless, it was more fun than being out shopping with the crowds at 5:30am....
Last week was the usual routine. Katie returned to school on Monday and I was a mom helper in her classroom. She likes having me in her class it seems. She just goes about her business (playing) with the security that I’m right there if the need for me should arise! Of course, it rained the day that I was a mom helper, so the kids couldn’t go out on the playground that day. I am eager to see her act “like an athlete” as one of her teachers described her one time after their playtime on the playground.
Tuesday Katie was able to see her friend John. With the weather being colder, we are just staying indoors now so the kids have fun coming up with new uses for the toys and creating their own games.
Wednesday we hosted Spielgruppe at our house. Katie had fun with “die Jungen” (the boys)…there were five boys playing (including Christian), and she was “das einzige Maedchen” (the only girl)!
Thursday was a crazy day here at the house. Okay, well, just slightly more crazy than normal due to the number of people coming through the revolving front door. I was watching our friends’ girls (ages 9 and 10) as they are homeschooled and their mom (teacher) got called for jury duty. They were here all day. Then I had scheduled a playdate with Katie and Christian’s friends, Ellie and Charlie. So…we had a boat load of kids here in the morning. Katie had fun with all her friends. Christian also had a fun time with Charlie as they are just a few days apart in age; Christian finally got to play with someone his own size! After lunch, Jenny, Emily, Katie and Christian all piled into the car to go to German class. (Yes, they were all seat belted and/or car seated, not merely piled in like clowns in a Volkswagen, but with that many kids in tow I did feel like a ring leader!) Katie really enjoyed having Jenny and Emily with her in class! And, she loved playing with them in her house all day too!
Friday we didn’t make it to the neighborhood playgroup as I wasn’t feeling too hot. I have had laryngitis that has kind of lingered on and off. Thank goodness the kids haven’t shown any signs of it or caught any form of it! And, since our neighborhood playgroup only meets every other week on Fridays, we may hardly see them. Katie’s clinic visit is on the 17th which is the next playgroup date so we won’t be going that week either. Argh!
Oma was here this past weekend. We had a busy weekend and so Grandma stayed with Katie and Christian while we ran around some. Katie loves showing off to Grandma now and Grandma’s getting more used to Katie’s “language” which consists of some German, some English and some, well, uh, Katie words like “flate” for “plate” and such.
This past Sunday, the 5th, was the Light the Night Awards Ceremony for The Leukemia and Lymphoma Society. We were invited to attend and our team, Katie’s Cheerleaders, came in 6th overall in terms of total amount raised for all Naperville teams. They also broke down the teams into two groups: “friends and family” teams (those that are run and usually organized by an individual – like us) and “corporate” teams (those that are run and organized through a company where the workers at that company are team captains, team members, and contributors). Of the Naperville “friends and family” teams, we were #2 in terms of total amount raised with $7,372.48. The top corporate team raised $18,000 and the top friends and family team raised just a bit more than Katie’s Cheerleaders.
We also found out that there were approximately 2,500 walkers in Naperville on September 23, 2004. The Naperville walk raised a total of $320,000 for The Leukemia and Lymphoma Society. And, among the six walks held in Illinois in 2004, a total of $1.3 million was raised for the LLS. Thanks to everyone who contributed to our fundraising, walked with us, or supported the LLS in some way this past year. Won’t you consider walking with us next year? Mark your calendars for Thursday, September 22, 2005 at the Riverwalk in downtown Naperville, Illinois!
After the awards ceremony, we were treated to a free movie, The Polar Express. It was really a cute movie! Katie and Christian stayed home with Grandma during the awards ceremony and movie. We knew that Katie wouldn’t have the patience to sit through the movie.
Sunday night Katie put out her boots by the front door so St. Nicholas would come. We all put our shoes out (Mommy, Daddy, Christian, and Oma) that night. On Monday morning, December 6, St. Nicholas Day, Katie enjoyed finding Mickey Mouse stickers in her boots along with two books and a little toy car. Christian got a book and a noisy toy. Katie also declared that “I don’t like these mittens.” for the mittens St. Nick left in my shoes, but seemed fine with the socks that Kevin got and the decorative plate and notepad that Oma received.
Katie returned to school yesterday. She did fine, though when the moms started arriving to pick up the other kids in her class, the teachers said she did start crying. When I got there, she was very happy to see me and Christian and we went home where she got her special lunch treat which was some tortilla chips and cheese dip. Kevin took her and Christian out in the evening in the stroller as the weather was quite mild—for December. In Chicago. (Yeah, 50 degrees is a heat wave for us right now!) They strolled around the neighborhood to see the lights on the trees. Katie described the lights as being up in the trees as “high as pie!” : )
Today Katie’s friend John came over to play and have lunch. They have a grand time together. She demonstrated for us that she can now catch a big ball. And, Christian was also a show off and started pulling himself up on a toy. He has never done that before! And, speaking of firsts for Christian, he’s getting tooth #5 and #6 on the top now. He’s going to have a bunch of chompers before the end of the year! He’s still not crawling forward, but after sitting him near the Christmas tree, I’m kind of glad he can’t crawl. He wanted to pull down every ornament he could reach, stretch for every one he couldn’t, and yank on every branch he could grab! It’s better he waits to start crawling until after the new year…when the tree is down!
Tonight we were putting out more Christmas decorations with Katie’s help. She loves to decorate the tree with ornaments and she put the angel on top of the tree tonight. Well, we had to adjust her placement of the angel though--it was about a half a foot shy of the top! She and Christian have a nativity set to play with that we unpacked tonight. Katie picked up one of the wise men, saw the little package he was carrying, and said, “Hey, he’s got coffee!” Upon further questioning, she said the other wise man is carrying “butter” and the other brings “bread” with him. So…forget that gold, frankincense, and myrrh stuff. We’ve got guys bringing practical stuff: coffee, butter and bread. : )
And, for those of you patiently waiting to see more smiles from the kids, visit their websites. We just updated them with new photos this weekend. Enjoy!
Thanks as always for your concern and continued thoughts and prayers for Katie. We all appreciate it.
Love,
Amy, Kevin, Katarina & Christian
Tuesday, November 23, 2004 11:57 PM CST
*~*~*Please, please, please consider joining the National Marrow Donor Program registry TODAY to possibly help Taylor Krueger.*~*~*
Good news! We got the call from clinic on Monday morning that the results from Katie’s spinal tap on Friday were all clear.
Katie’s been handling the steroids so-so. She’s been her usual agreeable self--at times. Then at other times, unpredictably, she is crying and screeching unexpectedly and for no obvious reason. And, if any of you are familiar with The Simpsons, you may recall an episode where Homer Simpson is just screaming continuously while he goes about his usual routine. That is what we experience with Katie. She will scream and cry through the entire getting ready for bed process, but undress, put on her pjs, brush her teeth, etc. all while punctuated with continual screaming. It starts to get old, but we only have one more dose on Wednesday morning and then she’s done with steroids until Friday, December 17 which is also her next clinic visit.
To all of you, Happy Thanksgiving. There’s a lot to reflect on this past year and, of course, lots of obvious things to be thankful for. I’m not going to run down the obvious list of the things we are thankful for. Instead, I’m turning the tables to focus on YOU, Katie’s cheerleading team! We want to thank everyone who takes time out of their busy lives to read Katie’s Caring Bridge site. We also want to thank you for signing Katie's guestbook. It's a guaranteed way to make us smile to see a new message there!
We want to let everyone know how grateful we are and always will be for the continued prayers and concern for our little girl and for our family as a whole. We want to thank everyone for the support that we’ve received in the past year. We want to thank those of you we’ve met on this journey that we wouldn’t have otherwise met. Yes, cancer is a lousy way to meet people, but we’ve made some great new friends along this path. And, thank you for you anonymous folk who check in on Katie and we don’t even know who you are. The counter on this page goes up every day, so we know that there are lots of people on Katie’s Cheerleaders team.
Lastly, we are thankful for a service such as Caring Bridge that allows us to post updates and keep in touch with everyone in an easy manner. The service provided by Caring Bridge and the community we’ve discovered through Caring Bridge is priceless to us.
We couldn’t get through this ordeal without all of you, so we give thanks for all our Caring Bridge visitors, near and far, who keep Katie and our family in their thoughts and prayers.
Happy Thanksgiving!
Love,
Amy, Kevin, Katarina & Christian
Friday, November 19, 2004 2:32 PM CST
*~*~*Please, please, please consider joining the National Marrow Donor Program registry TODAY to possibly help Taylor Krueger.*~*~*
Thanks for checking in on Katie. The good news is that today Katie was able to start Long Term Maintenance! Her ANC had risen over 1,000 so she could begin LTM. Yay! We also got the official off treatment date, May 14, 2006. Yes, it’s a date way in the future, but at least we have a date to look forward to and maybe for Memorial Day weekend 2006 we can plan a big celebration!
The trip to clinic was the usual looooong one. This time it was raining. It really doesn’t seem to matter if it’s raining, snowing or clear; sunny, cloudy or foggy; cold or hot; early morning or late morning. The drive to clinic in the morning will take at least 1 ½ hours…or more. Parking was also at a premium at the clinic and we had to valet park for the first time. Katie thought it was fun to “give” our car to someone else! I just saw it as extra dollars flying out of my purse!
She handled the spinal tap very well and the initial results were all clear. We will get the final results on Monday. She starts a five-day pulse of steroids tonight and ends them on Wednesday morning. We hope that they don’t affect her too much. We don’t need attitude at the Thanksgiving dinner table! Her next clinic visit is not until Friday, December 17, 2004 which is a nice, long four weeks away.
Katie had a fun drive to clinic today. She saw a big semi with a trailer that had 7-up written on it. She saw the red dot in the logo and pointed out it was a ball on there. I told her that it was indeed a ball. Then I explained to her that 7-up was a soda and that it was lemon-lime flavored. She was intrigued by the concept of “flavor” for some reason, so I started listing out every flavor I could think of: various fruits, candies, chocolate, etc. Finally, I couldn’t think of any more and it was quiet in the car. From the back seat she said simply, “Too many flavors.”
And, she has expanded her wish list from Santa. I mentioned previously that she has said she wants “Mickey Mouse toys and bear toys.” Well, she now includes “monkeys and alligators” in the list of things she wants. In case Santa is reading this, I just want to make it clear that I cannot handle a monkey in the house, nor an amphibian of any size. So, go for the furry, stuffed or rubber/plastic models, please!
We don’t know what Christian wants for Christmas, but he might be getting his two front teeth. He definitely has one on top poking through and the other surely isn’t too far behind. He’s chomping away at everything right now.
This week overall was pretty quiet. Wednesday we did not attend German Spielgruppe (playgroup) as one of Katie’s friends there just got his chicken pox vaccine. At the advice of Katie’s doctors, we need to steer clear of long contact with anyone who has gotten the chicken pox or MMR vaccines due to Katie’s lowered immunity.
Thursday also resulted in a canceled German class as both chicken pox cases and strep throat have been floating around the language center. We decided to skip class Thursday to avoid exposure to those two things. At the last minute, I decided to take the kids to the zoo...at 3pm...after running errands...in the rain. I parked at a gate closest to some exhibits and then put them in the stroller (with their awnings) and we visited the swamp (appropriate) and the amphibian house. Katie seemed to enjoy it and is still enamored with the snakes, crocodiles, and alligators. She also enjoyed touching some of the lights that are up for the zoo’s Holiday Lights and just running in the rain. The drive home was pretty yucky (dark and rainy during early rush hour), but it was strangely fun to be almost alone at the zoo in the rain with the kids!
Thursday evening Kevin and I took another opportunity for a date night. Since Katie was off all meds this week due to last week’s low counts, she could eat until she went to bed and we didn’t have to give her any medications before bed. Megan came over to feed the kids and then Kevin and I went out to a local Japanese restaurant we haven’t been to in a very long time. It was a nice evening, but, alas, it was raining.
Today, of course, was clinic day and we had to skip our neighborhood playgroup. Things this weekend and next week are pretty much laid back as we get ready for Thanksgiving. Hope you have a great weekend!
Thanks as always for the continued thoughts and prayers for Katie.
Love,
Amy, Kevin, Katarina & Christian
Wednesday, November 17, 2004 8:58 AM CST
Thanks for checking in on Katie. She's continuing to feel great and we're hopeful that her ANC has gotten (and stayed?) high enough so she can start Long Term Maintenance on Friday, November 19. Time will tell....
Some quotes from Katie this week that we had to share....
"I feel pretty." -- after putting on a pair of my high heel shoes.
"I need money." -- after Kevin gave her a few quarters to put in her toy cash register & then retrieved them later without her knowing.
"No. No, Christian. No play with porcupine." -- while Christian was grabbing for a brush to play with; Katie thinks anything with bristles is a porcupine.
"Mom. Mom. Come in das Zimmer." -- she wanted me to see her giving Christian a big hug!
"No, no Dada. Stand up. Be big boy." -- to Kevin as he was going up the stairs behind her pretending to be a lion.
This weekend was very low-key and we were happy with that as we've been booked pretty solid most weekends in the recent past. We just hung out as a family, took an impromptu visit to a local farm zoo, ran a few errands, and did stuff around the house. It was quite a normal weekend.
Our babysitter was available on Sunday night and Kevin and I had a date night! We went out for Indian food and had uninterrupted conversation. Wow! It was refreshing. We got home in time to get the kids in bed ourselves. The "deal" we made with Katie before we went out was that we'd be home in time to put her and Christian to bed ourselves. Katie didn't mind playing with Megan then.
Katie returned to school on Monday and the teachers once again said she did great there. One teacher commented that she is "like an athlete" outside when they go to the playground. I guess going up and down the slide continuously until the kids have to go inside qualifies her for athlete status. I'm just happy to see and know that she feels good enough to keep very active.
After her school session, we came home and had French fries (her promised treat for being good at school) and then she slept away a good portion of the afternoon. She likes her school morning once a week, but it wipes her out.
Tuesday was a blah grey and rainy day here, so we met Katie's friend John at the mall. We all ate lunch together at Ruby Tuesday's and then went to stroll around the mall together. I pointed out to Katie and Christian that Santa was there and maybe we'd go see him soon. Katie was not interested and we proceeded past his little set up quite quickly at Katie's prompting. She was more interested in the carousel (which I told her we'd do another day) and then the play area.
We had never been to the play area before as it's usually too crowded and I'm too chicken to let her go in there if I'm alone with her and Christian. (I fear if I need to "rescue" her, I can't leave Christian alone in the stroller.) So...there is a tall climbing tree type thing covered in this wire type netting. It's hard to describe what this thing is, but it's almost two stories tall, has various carpet-covered levels, and every kid there seems to love climbing it.
John had been there before and had been a few levels up. I figured that Katie wouldn't be able to get up to the higher levels due to the height of each step up. Well, lo and behold, that monkey girl climbed at least two thirds of the way up and then down again and then up again and then down again. She did it so many times, I lost count. And, she had no bad interactions with rough or bigger kids, no tumbles, no crying. She was all grins. When she finally emerged (happy as a clam!) she exclaimed, "Wo water?" (Where's [my] water?) and sucked on her sippy cup until it was almost empty. Needless to say, she had a great time!
When we got home we were discussing how we had seen Santa at the mall. I asked her (umprompted) what toys she wanted to ask Santa for for Christmas. She said without much hesitation, "Mickey Mouse toys and bear toys." We have no idea where this has come from as she has very little Mickey Mouse anything and her only exposure to Mickey Mouse (that we know of) is through Disney Channel blurbs with Mickey and then her oncologist wears a Mickey Mouse watch that he always asks her, "Who's on my watch?" As for the bear toys, that could mean anything. She's currently obsessed with Lars, a little polar bear from the children's books of Dutch author Piet de Rycker. She watches a few Lars cartoons in German and loves "Eisbaer."
Thanks for continuing to keep Katie and us in your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Friday, November 12, 2004 3:40 PM CST
Thanks for checking in on Katie. She’s doing fine. No cough, no cold, no runny nose, no outward signs of her fighting anything. But, surprisingly, her ANC is just 714 so she didn’t get to start Long Term Maintenance today. : (
She’s off all meds for one week now to boost her ANC and then we’ll return to clinic next Friday and see if she can start LTM then. And, our "normal" schedule now goes out the window as we replan everything that we had scheduled for this week (to accomodate Katie being on steroids) and what we were going to do next Friday and next weekend and the week after (which we'll have to accomodate Katie being on steroids now). ARGH!
Today was a pretty long day despite nothing really happening. It took us over 1 ½ hours to get to clinic (which was just a long time to be in the car!) and then we get there and Katie’s port wouldn’t return any blood! The nurse tried once, nothing. Tried again, nothing. Tried with Katie lying down, nothing. Tried with Katie raising her arms up in the air, nothing. Tried with Katie on her side, nothing. The nurse finally put a med in her port to clear clots and came back in 20 minutes. Still nothing. Then she returned another 20 minutes later and miraculously, she got blood. There has never been a problem with Katie’s port and the nurse who drew her blood is a nurse who always accesses Katie, so it wasn’t like she didn’t know what she was doing. It was just unusual and a little more trauma for Katie who doesn’t like the whole accessing portion of the clinic visit as it is.
She did get the second dose of flu shot so the trip wasn’t for nothing after all. Now she’s set with the flu shot for the season.
We had a good week. On Tuesday Katie and Christian had a fun morning with Megan. Megan, their babysitter, came over to babysit while I ran errands. Katie loves playing with Megan and Christian is used to her now too. After lunch we went to the zoo with Katie’s friends Sarah and Jacob and we all had a good time. Katie felt great and spent a lot of time out of the stroller running with Sarah and Jacob. (The photo on the main page above is her at the zoo on Tuesday!) Katie got to see the rhinos (her favorite, you know!) and the one was even playing with a giant ball which she thought was hilarious.
Wednesday was Spielgruppe (German playgroup) and Katie and Christian had a fun time. We’re meeting more at people’s homes now rather than at outside places due to the colder weather and Katie and Christian, of course, find it much less stimulating and get bored or hungry or both faster. Gosh, it isn’t even officially winter yet and we’ve got cabin fever?
That afternoon we went to get holiday photos taken. Katie and Christian were both quite cooperative, but Christian was the less eager of the two to smile this time! Photos to come of course!
Thursday Katie got to see her friend John and play with him for a while. That afternoon we went to German class and Katie learned more about food and built a sandwich using her German vocabulary!
The other big news around here is that Katie’s Cheerleaders, the team we created for The Leukemia & Lymphoma Society’s Light the Night walk on September 23, has placed 6th among all teams in the Naperville, Illinois walk in terms of total amount raised. Final tallies are to be announced on Monday, November 15 and there is an awards ceremony on Sunday, December 5. We’ll keep you posted on the final numbers! A great big thank you to everyone who has contributed to The Leukemia & Lymphoma Society and supported Katie's Cheerleaders.
Thanks as always for checking in on Katie. The extra thoughts and prayers are working on her behalf.
Love,
Amy, Kevin, Katarina & Christian
Tuesday, November 9, 2004 11:01 PM CST
Wow! What a week! I went off on a tangent explaining what our family’s new normal is (see November 1, 2004 journal entry) and what a response we received from those who regularly visit our site and lots and lots of new visitors as well! Thanks to all of you for the support and encouraging messages. It really helps to be reminded now and again that we’re not alone and our observations are universal for many other families.
I would like send off a big thank you to Shelby’s mom who saw my November 1 journal entry and encouraged me to post the list it to the ALL-kids list serv, to which we are both members. She believed (rightly so!) that it was a list that was very relevant to other parents with children who have leukemia. Once I posted it on the list serv, Kendrie’s mom asked if she could link to the list as she found it very relevant. (See Kendrie’s November 4th journal entry.) Other members of the ALL-kids list also asked to borrow, modify, and use the list as well. I didn’t realize that one day’s tangent would hit home with so many. So…a big welcome and a thank you to everyone who is visiting for the first time from Kendrie’s site or another site that may have a link to ours!
We know that there are lots of you visiting Katie’s site now as the counter is going up by leaps and bounds on a daily basis. I blinked and we flew by the 5,000 visits! And, now the pressure is on to make Katie’s journal update as deep as the “new normal” list. I am afraid that this week hasn’t been as insightful in terms of an update, but I hope you’ll plug along with us regardless. We really do try to keep busy and keep to a normal schedule as much as Katie will let us. And, I’ve been doing this journal as a way to mark milestones for both Katie and Christian. I am hoping that this will all be interesting to them later on to read about the big and little things.
First and foremost, Katie’s continuing to do great. She’s continuing to be active and happy and just bubbling with conversation – in English and German and mixed -- all the time.
“Christian needs to take a nap.” - whenever she wants one-on-one time with me.
“Katie hat viel Spass!” (“Katie had a lot of fun.”) - as we are walking out of her school classroom where when she saw me coming to pick her up she burst into tears.
“Buy more bananas!” - when I tell her we didn’t have any for breakfast.
“Bitte, go!” (“Please, go!”) – whenever the car stops, whether it be for a red light or drive thru line or stop sign.
“Do polar bears jump on couches?” - My response was, “Do polar bears HAVE couches?”
She is scheduled to go to clinic this Friday, November 12. If her counts are good enough (ANC of 1,000 or higher and platelets of 100 or higher) she will officially start Long Term Maintenance. We are expecting her to be able to start LTM this Friday, but as we’ve experienced in the past, for no obvious reason, her counts have been low and she’s been delayed. So…we’ll see what happens on Friday. If her counts are good she is scheduled for a spinal tap and flu shot along with another dose of Vincristine. (Welcome back teeth grinding!)
If she does start LTM on Friday, she’ll also start another five-day pulse of steroids. Fun, fun, fun. But, she has handled them better in the recent past, so we’re also hopeful that we can get through the five days relatively easily. Regardless, keep her – and us – in your thoughts and prayers to get through the steroids phase. Once she’s in LTM, it will be monthly and so you can just put a recurring reminder on your prayer list to send up some extras for us.
Where did I leave off on our marathon schedule? Hmmmm. Too busy to be able to recall it all I think! : )
Wednesday, October 27 we visited another pumpkin farm with the German Spielgruppe (playgroup.) This one was really cool as it wasn’t crowded and it had a corn maze. I had never been in a corn maze and never really realized how tall that corn gets. Here you can see Katie dwarfed by the corn while we were figuring out where to go. Christian had fun figuring out hay, so he even got into the fun.
Thursday, October 28 was German class. Katie had a fun time as usual. The class theme was shapes that week. Friday, October 29 was a quiet day at home. I was trying to get the house ready for our little party on Saturday. The kids were somewhat cooperative. The upside is that Katie is really into housework. If I vacuum, she gets her vacuum out to copy my movements. If I dust, she wants a dust rag to do the same. She is quite a cute helper. Pretty soon she can get some of these chores to do on her own! Won’t that be a grand day!
Saturday, October 30 we had a bunch of friends over in the afternoon for a little yearly casual get together. This is the third year we’ve hosted the party and decided to move it up earlier in the year as we had been having it right after Christmas and it was hard to find a good date to mesh well with everyone’s crazy holiday schedules. This year Katie had three friends come to the party so she had playmates to keep her occupied. It was wild to see these kids playing together as they were all small babies (or not even born yet!) when the first party was held in December 2002! Unfortunately, I neglected to take any photos….
Halloween was a big day. First, it meant dress up! Second, it meant that Oma (Grandma) was arriving to stay for a short visit! From the photos you can see that Katie was a kitty cat with attitude and Christian was a quiet little giraffe. For Halloween in Chicago, the weather was simply gorgeous—warm, sunny, clear. (Normally it’s grey, windy, cold and usually rainy or even snowy.) We went to a local Halloween event held outdoors (at Naper Settlement) and everyone else had the same idea. It was very crowded! Fortunately, Katie isn’t into the candy aspect of Halloween. (She doesn’t care that much for sweet stuff and she still doesn’t get the concept of trick or treating.) So…she had a grand time running around the grounds, playing in leaves, asking for a free hayride (for which the lines were way, way, way too long!), and just romping around playing with her tail! She thought it was cool to have a tail and have ears on the top of her head. She also liked having paws. And, she allowed me to put makeup on her face. Last year she wouldn’t let me put any make up on her face and it really makes or breaks the costume to have a cute little cat nose and whiskers!
Oma came along to all this and accompanied us trick or treating to the neighbor’s houses. Katie didn’t say trick or treat despite all our prompting, but she still managed to collect a bit of candy. Once back at home, she helped answer the door and inspect the candy we were handing out. She liked what we were giving out and, like she did last year, she horded some of it from our hand out basket for her own. She just wanted to collect it and not eat it though which is fine with us!
Monday, November 1 Katie returned to her little once a week preschool program. It was very great timing that I was scheduled to be one of the parent helpers in the classroom that day since Katie had been away from school for 3 weeks due to holiday, steroids, and vacation, respectively. She loved having me in the class, although she did not hang on me or ask me to do much for her, to my surprise. I think she merely liked the security of having me in the room and able to see me if she turned around. The other kids, on the other hand, thought I was an excellent book reader. I don’t know how many books I read…or how many I repeated to another group of kids in her class. Oma stayed at home with Christian while I was the classroom helper. Oh, the day after Halloween was ugly – grey, raining constantly, and cold. It was what the usual Halloween is around here…. And, with the bad weather, we didn’t do much with Oma either outside or going anywhere.
Tuesday, November 2 Kevin and I voted before the sun was up, and most importantly, before the kids were up! Oma stayed with the kids while I went to cast my ballot. Katie got to see her friend John on Tuesday during their usual playdate. John has a new action (or one that we at least had not seen before) where he adds a bit of drama to his disappointment by laying down on the floor when he doesn’t like the answer he hears to a request. And, like I’ve noticed before, she tends to pick up a lot of John’s mannerisms. (For example, she learned how to cut the wooden Velcro-ed together fruit pieces after watching him do that just once.) So…guess who now lays down prostrate when she doesn’t like the answer she gets from us? She will lay her head in her hands and add a sigh for effect. Now we have a drama King with a reigning drama Queen.
Wednesday, November 3 was German Spielgruppe (playgroup). We hosted it at our house this time and Katie had fun with her friends here. She handles sharing her toys pretty well and Christian was entertained by all his German-speaking friends.
Thursday, November 4 we had German class. Katie is warming up more and more to the new teacher, Annette, there. She is speaking more and going along with the whole routine a lot more easily. She had been giving her new teacher a sort of “evil eye” when she tried to play a game that her former teacher, Erin, had played with her. It was the kind of look like, “You aren’t doing things EXACTLY like Erin did so I’m not going to play along.”
Friday, November 5 was another busy day. We hosted the neighborhood playgroup at our house. Katie is having fun getting to know kids from the neighborhood who are around her age and it’s nice to meet other moms from the area.
Saturday our friends Kay and Peter came to visit. Katie got a very cool horse book from Auntie Kay. Since Auntie Kay got her horse, Prince Charming, she is going to make sure she works Katie to love horses just as much as she does. Katie’s getting into horses more, but it’s going to take some doing to make Katie believe that a horse is a better pet than a rhino or snake! : )
We all went for a hike along the Fox River and Katie got to visit her favorite cave there. For some odd reason, Katie thinks that race cars and elephants can be found in caves. We have no idea where this came from. The funny thing is that Auntie Mo is into NASCAR, but we all watched the race with them a few weeks ago AFTER the kids were in bed, so we’re not even sure where the race car thing has come from. And, as far as I know, the elephants we see at the zoo don’t live in caves….
Sunday Daddy had Katie and Christian all to himself while I went to a baby shower. Daddy took the kids to the playground and reported back that Christian is now holding on to the swing chains while he swings. And, Katie said she wanted to swing not only “all day,” but now “all night!” Wow! She really loves the playground!
Monday Katie went to school and did fine for the entire 3 ½ hours. I am always waiting for their call to ask me to come pick her up early as she’s not happy. But, I am pleased to report that she did fine. She came home with a hand made necklace and a hat covered in feathers. She even had paint on the back of her shirt which to me indicated she had a great time!
Sadly, we also attended a wake on Monday for our friend Mark's mom who passed away on November 5. As many of you remember me mentioning, Mark completed the Chicago Triathlon in August and raised funds for The Leukemia & Lymphoma Society through Team in Training. One of his heroes was Katie. Please keep Mark and his family in your thoughts and prayers.
Megan, the kids’ babysitter, has been spending more time here lately. She enjoys the time with them and Katie is now fine with me leaving the house while Megan is here. So, I’ve been taking advantage to get some Christmas shopping done. It’s amazing how many errands can be run when you don’t have to buckle, unload, get a cart or stroller, and then reload and re-buckle two kids. Phew! I feel like a wild woman when I shop during these excursions! “Ma’am, would you like a cart?” “No, thank you, I’m child-free for the moment.” Just for fun, I even go down those tight aisles of stores that have products precariously perched from all directions just for the thrill knowing that no one will pull anything down and I won’t knock more over trying to restrain the kids!
The Light the Night Katie's Cheerleaders commemorative t-shirts are in! I have most of the packages shipped out. And, we do still have a few adult size L and XL left. If you’d like one, contact us. They’re $8 each and we’re donating $0.50 from each shirt sale to The Leukemia & Lymphoma Society. (I will post a photo of the kids wearing their shirts soon!)
The final fundraising amount for Katie’s Cheerleaders for the Leukemia & Lymphoma Society that we raised through the Light the Night walk in September is $7,372.28!!!! To think our original goal was to raise $1,000! Final info on the top individual fundraisers and top team fundraisers will be announced by late November and we’ll keep you posted if we made any of those lists. Thanks to everyone who helped us raise money!
We updated the kids’ websites this past weekend. You can see some recent smiles from both Katie and Christian. Christian is starting to scoot backwards which you know means he will be crawling forwards very soon. I’m not sure if we are ready for that yet, but he likes scooting and twisting and reaching to get his little fingers on anything he can reach. Katie is learning that she needs to keep things outside his reachable radius now!
I also came across the fact that November is National Marrow Awareness Month. Please look at the requirements for joining the National Donor Marrow Program registry and see if you can make the commitment. By joining the registry, you can help save a life if you are a match.
Thanks as always for your continued interest in Katie and Christian and us. We are grateful to have a wonderful network of friends (old and new!) and family who keep checking in. Thanks also for the thoughts and prayers which help get us through each day.
Love,
Amy, Kevin, Katarina & Christian
Monday, November 1, 2004 11:09 PM CST
Please, if you are an American, take time out to vote on Tuesday, November 2. Please keep in mind that the future of our country depends on you making an informed decision on who should lead our country.
Off one soap box and onto another....
Many of you who visit regularly have noticed the pattern of me writing about our “normal” weeks and the “normal” milestones going on in our “normal” life. Neither Kevin nor I want leukemia to rule our family's life so we try to keep things normal as possible for everyone’s sake. However, I want to let you all in on a secret at how abnormal our life and Katie’s life is.
How many two year old children do you know have...
...undergone enough spinal taps and needle pokes that we have lost count.
...had their Fridays relegated to “clinic days” instead of “play dates”?
...asked to wash their hands after touching just about anything and everything outside of the house.
...to refrain from eating anything for two hours before bed to take a meds nightly.
...to take meds nightly, every single night of every single week of every single month.
...an oncologist that they request by name when they go to clinic?
...figured out the names of the different medications that they take. (Can YOU pronounce Dexamethasone, Mercaptopurine, Mexotrexate, Bactrim, Pepcid, Zofran, etc.?)
...a play medical kit that they know by what a stethoscope, thermometer, otoscope, syringe, blood pressure cuff, and such are by name and how to use them? Then “practice” using these things on their brother, cats, parents, and friends?
...the patience of Job to sit and take meds without fussing or making a face and just accept as their normal routine?
...routinely given pretend medicine to their stuffed bear and baby doll and then say “good job” after "administering" the dose to their "patients?"
How normal is for parents to...
...think about taking a trip and its proximity to a local hospital.
...carry around the oncologist’s office number, pager number, emergency number and the nurse practitioner’s phone number.
...carry around a list of medications that Katie is on “just in case” there is an emergency.
...have a child on steroids for five days every month.
...have to check the stash of prescriptions every Sunday night and make a Walgreen’s run right after the weekly grocery store run.
...feel your child’s head daily (constantly?) to see if they have a fever.
...worry about every bruise and whether it is a sign of more than an innocent bump.
...routinely examine their child and look for petechiae on your child’s legs?
...wonder about every sneeze and cough and whether it could turn in something worse.
...worry about what your child’s platelet counts are and whether you should cut their fingernails this week in fear of cutting them and causing an infection or bleeding.
...not even think or type or want to say the “r” word.
…worry about your child’s ANC (Absolute Neutrophil Count) and how susceptible to infection they are.
...know how to calculate the ANC?
...know how to read a CBC (complete blood count) report from the clinic.
...worry that the bump on the head causing internal bleeding.
...check that your child’s port-a-cath on her chest looks and feels right.
...pick up your other child and feel for their port-a-cath and then remember that not all babies have them?
...tell your child, when they ask “what is this?” that the bump under their skin where the port is, is simply, “part of you” just like an elbow and toe and ear?
...have the bags packed and always waiting to go to clinic visits with enough food and activities to occupy a child for 2 to 6 hours.
...think about how an unplanned clinic visit or hospital stay is going to affect everything else that you try to plan as a family.
...have two children who are 6 months old and 26 months old with the same amount of hair.
...remember to make your child grab a hat on the way out the door regardless of the weather.
...have a child with a hat wardrobe that rivals the Queen of England’s hat collection?
...be grateful that all we go through and all Katie endures isn’t “as bad” as what other children have had to deal with.
...constantly be brainstorming ways to raise awareness for childhood cancers to end the suffering for the children and families.
...worry about every child you see or hear about that looks pale, fatigued, might have a recurring fever, inexplicable pain, etc. and pray that no one else has to go through what Katie and we have been through.
...have a prayer list that requires you to reference your “favorites” file on your Internet Explorer browser to make sure you didn’t forget any of the children you’ve met through Caring Bridge?
...meet a new child suffering with a serious illness everyday by visiting these friends on Caring Bridge who then refer you to others with Caring Bridge sites?
...look at everyone giving blood or platelets at the blood donation center and wanting to shake each person’s hand for saving lives with their donation and time.
I think a lot of you who have a child with an illness know that normal has a new definition. It’s hard to explain and most of us, I think, try to just put these abnormal things into the daily routine and don’t often think about them anymore or bother to classify them as normal or abnormal. They are our normal. We have to accept these things no matter what. To the outsider though, it’s a very different world than they are used to living and hearing about. And, we want to thank all of you who have stuck by us and given us help and encouragement and support. We appreciate it immensely--more than words can say, really.
I guess I just want you to know that Katie and Christian and Kevin and I still need your thoughts and prayers and concern. This path we’re going down is not easy and far from over. Though Katie is scheduled to start Long Term Maintenance (LTM) on November 12, there is no guarantee that LTM will not be a roller coaster ride. And, LTM is approximately one and a half YEARS in duration. We have a long haul ahead of us.
We keep busy to make sure that Katie has lots of fun experiences, sees as much of the world as possible, and explores and questions all that she can. With our usual busy routine we hope to make things more bearable for all of us. (I’ll update with our normal whirlwind of activities later this week. Katie continues to do well and enjoyed Halloween as you can see from the updated photo above!)
Thanks for listening and thanks for the continued thoughts and prayers. Now go vote! : )
Love,
Amy, Kevin, Katarina & Christian
Wednesday, October 27, 2004 2:23 PM CDT
Thanks for stopping by to check in on Katie. She continues to do really well and we are grateful for everyone's continued thoughts and prayers and concern.
Katie handled the five days of steroids last week relatively well. She was a bit unpredictable at times, but it was hard to tell if it was the steroids or just her two-year-old-ish-ness coming out! : )
She never got the ravenous hunger this time around, though she has been eating a lot lately even though she's not on steroids right now. (By ravenous I mean hanging on the refrigerator door begging for food. She still ate quite a bit at one sitting though.) We are hoping that maybe she's going through a long awaited growth spurt. Since she started treatment six months ago, she hasn't grown but a fraction (maybe ¼" inch) and it would be nice for her to wear different winter clothes than she did last winter. There seems to be just something wrong with a child wearing the same clothes from last season. It's unheard of. Plus, selfish me -- I would like to dress my little doll in some new winter clothes! : )
We would like to point out Katarina’s brand new Smile Quilt which we received this week. It's an online quilt made of personalized graphic squares and a very special poem for Katie. It was lovingly made by the talented Quilting Angels who volunteer their time and skills. Visit SmileQuilts.com to read about this special service. Katie loves her smile quilt as it's filled with lots of her favorite things.
Hmmmm. Where did we leave off last? Last Wednesday was the last dose of the dreaded steroids (until she starts Long Term Maintenance, hopefully on November 12) and we decided to try yet another pumpkin patch/farm with the Spielgruppe (German Playgroup). We had a nice time despite the overcast skies and intermittent mist. There were plenty of activities for the kids including a petting zoo with some very aggressive goats who wanted to be fed as soon as you entered the enclosure. Katie got a bit overwhelmed and we just watched from outside the fence while others fed the hungry goats. We are happy to report that we did NOT bring home another pumpkin. We have plenty!
Thursday Katie had her German class and enjoyed it as the teacher she knows best, Erin, was there subbing for the regular teacher. Katie showed off how much German she can speak now and was very proud of herself! After class we went over to wish Katie's friend Jacob a happy 5th birthday and see his sister (and her friend) Sarah. They had a great time playing together and Katie did not want to leave!
Friday we headed on the open road to our long awaited vacation (long weekend really!) to Kentucky. The kids handled the car ride better than we expected. I guess Katie is used to the sometimes very long drives to clinic, so doing 3 hour stretches in the car is nothing to her anymore. We had clear weather the whole ride down and Katie happily was amused in the backseat with a box of Happy Meal type toys, a few books, and taking off her shoes and socks and then putting them back on again. Whatever makes her happy....
Christian was also agreeable to the ride and we realized the benefit of having two children in the backseat: they entertain each other! Christian would watch her playing and then she would notice him watching and entertain him by making him smile or laugh. It worked out great!
We arrived in Kentucky on Friday in time for dinner and Katie took to our friends' house in no time flat. Her friend Frankie (3 ½ months old) had enough toys and books to keep Katie amused for at least several weeks. Katie would run to Frankie's room, bring out something new for herself to play with or just stay in Frankie's room and play with something there. She also loved the fact that Frankie is still in an infant car seat; she used Frankie's car seat to secure both her bear and then her baby doll. (Christian has long outgrown the infant car seat and so it's not out anymore at our house for her to play with!) She had a blast!
We spent the weekend leisurely hanging out with our friends Mo and Robb and seeing a few sites in the Cincinnati area. (Thanks guys for putting up with all four of us and letting us get a much-needed escape from the same boundaries we've been used to for much too long around here!) Katie enjoyed seeing the Ohio River, but constantly asked, "Wo duckies?" (Where are the duckies?) She is used to seeing water with ducks or geese nearby. The part of the river we saw had a few ships, but no ducks to her dismay!
She also had a blast at the COOLEST playground that was along the river in downtown Cincinnati. It was built under the highway, so even though it was misting a bit while we were there, Katie played and stayed dry thanks to the roadway overhead acting as a roof! It is a totally accessible playground with so much to offer kids and parents trailing kids. I want to call our mayor and ask if we can arrange to get one built here!
This trip was the first overnight trip for Christian anywhere other than at our house or the hospital he was born in. The first night in a new place really upset him and he only slept in the pack and play by himself half the night. We had to "rescue" him when he awoke in a panic the first night. Strangely enough, the second night he slept straight through. Then the third night he again awoke in a panic and we had him sleep with us. Despite this, he handled the running around and new surroundings in stride. He also seemed to enjoy seeing a lot of new things and playing with his friend Frankie.
Katie, on the other hand, slept in a sleeping bag on the floor and did just fine. (She used to sleep in a pack and play when we traveled, but Christian gets the pack and play now.) The only problem with the set up was that one night she scooted herself under the bed in the room she was sleeping and we had to pull her out feet first from under the bed when she was awakened by Christian's fussing. She didn't even realize she had been sleeping UNDER a bed!
They both handled the car ride back home without incident. We were grateful for that once again. They seemed happy to be home again and see their kitties. Katie made a point to make sure they had enough food and that they were okay while we were gone.
After this trip, Christian now has 5 states under his traveling belt. Not bad for an almost 7 month old! Katie still has him beat with 8 states though.
Katie missed out on her school program again this week since we were traveling on Monday. She will resume next Monday and it just so happens that I will be a room helper that day, so it should make the transition to her returning there after a 3 week absence a little easier on her.
Tuesday Katie had a fun time seeing her friend John once again. She really talks about him during the week and looks forward to his visits. Tonight at dinner she kept telling us that he played drums while he was here. I guess she enjoyed that aspect of his visit the most. She did serenade him with her singing the "ABC Song" a few times. John didn't join in though he knows the song too.
This week Katie's also hanging out a bit more with her old babysitter, Megan. Megan's got some extra time after work right now and stopping by to reacquaint herself with Katie and get to know Christian a bit more so Kevin and I can get out on our own once in a while. Katie is very protective of her time with both Mommy and Daddy, but we'll ease into having Megan spend more time with the kids so it's not too traumatic for Katie when we do head out the door for a dinner out by ourselves some night....
Katie's language acquisition continues to grow at lightening speed. She picks up everything said and questions everything. She wants to know what things say on books and packages and always asks, "What say Mama?" while pointing to words on something. Her newest phrases are "Katie wants to swing high as pie." when she gets on a swing at the playground. We're not exactly sure where this came from, but it could have been something at school in a book or on a TV or radio piece we didn't notice. She also is punctuating things that she enjoys doing with "Katie wants to do this all day." The most frequent is that she wants to "swing all day" at the playground. We're not sure if she really gets the concept of "all day," but it's cute nonetheless!
She has mastered doorknobs and can open doors now, most noticeably the basement door so she can get to her toys. And, to our chagrin, she can screw on and off tops. We've discovered the worst thing that this affects is her sippy cups. She can open them up and often times insists on screwing the lids on herself. More wet spots here, there, and everywhere! At least it's water that is in her sippy cups. She is also obsessed with light switches and wants to turn all the lights on and off. Argh. : )
Christian has two teeth on the bottom now. He's eating jarred foods and cereal like nothing and we've moved to some stage 2 foods already. He has no problem eating as all...as evidenced by his size! : ) He is also just starting to scoot backwards when he is on his tummy on the floor. This was what Katie did right before she figured out how to coordinate herself to start crawling forward. It's going to be a wild place around here once he starts crawling!
And, it looks like Christian is going to lose the hair growing race. Christian's hair is coming in, but at a much slower pace than his sister's. So...although he had a four month lead on her to grow in some fuzz, his sister -- in just two months -- is beating him. You can really see her hair now coming in nice and fuzzy. It's still blonde and still the same texture that it was before she lost it all in early August.
I finalized the artwork for Katie's Cheerleader t-shirts on Monday night. The shirts are due to be ready on November 5 and we'll let those of you who ordered them know when they are ready for pick up or to be shipped. We probably will have a few extras (in adult size L and XL) left over after everyone gets theirs. Let us know if you'd like to buy one.
The final tally for Katie's Cheerleaders team is well over $7,000 and we will have the finalized grand total available in mid-November. You can still donate to The Leukemia & Lymphoma Society until November 1 and it will count toward Katie's Cheerleaders total. We will also find out what the winning team total was and who they were. We would like to thank everyone for supporting The Light the Night walk with your contributions and support! You surpassed our expectations by leaps and bounds!
This weekend will be a big one with Halloween, a visit from Oma (Grandma) and a party we're hosting at home for a group of friends. We'll update when the dust settles here.
Happy Halloween to everyone! Oh, those of you reading this in the US and who are registered to vote: Don't forget to vote on Tuesday, November 2! Your vote is important!
Katie's next scheduled clinic visit is Friday, November 12. We are still hopeful that Long Term Maintenance will begin that day.
Thank you for the continued thoughts and prayers for Katie and for all of us!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, October 19, 2004 11:49 PM CDT
Thanks for checking in on Katie. First, Katie’s spinal tap final results came in on Monday and showed that all was clear. As always, we were glad to get that news!
We have just one more dose of steroids to give on Wednesday morning and then no more yucky steroids for three weeks. Yay! Katie’s been handling them very well we are happy to report.
Last Monday Katie didn’t go to her little morning school program due to the Columbus Day holiday. It was fortuitous that Katie didn’t have school as she started exhibiting symptoms of a cold that day. I had had some laryngitis symptoms that weekend and Kevin had a cold start up on Sunday, so we weren’t surprised. She had a little congestion and then started coughing most of the week. Christian was a bit wheezy, but both of them kept acting/playing, sleeping, and eating just fine.
Due to the cold-like symptoms running around here, Tuesday we canceled our plans with Katie’s friend John and instead stayed close to home. Wednesday the kids seemed much better and we went to German Spielgruppe (Playgroup) to a farm in Geneva. Katie enjoyed feeding the goats there. Because her friend Nicholas has started picking up kittens at these farms we visit, Katie is suddenly comfortable also picking up kittens who come up to her. She is so gentle with them and it’s so cute to see her holding a kitten…it just makes me want to add a little kitten to our family. Then I realize I have PLENTY of work to keep all four of us and our current two cats and house plants going, let alone adding another adorable, amusing, warm, cute, soft, fuzzy, furry, tiny, and possibly grey kitten to the mix. Needless to say, our two cats wouldn’t be too happy with such an addition either.
I digress....
Thursday we went to German class and Katie had a great time once again. It was one-on-one with the German teacher, Annette, so Katie really enjoyed it. Christian sat in the corner with his pile of toys and it seemed every time I looked at him, he was watching the teacher intently like he was taking it all in! Hmmm. Katie’s first word was “Uh-oh.” Will Christian’s be “Aufwiedersehen?” Time will tell!
Friday was Katie’s clinic visit. Once we finally made it there, things were very efficient and we were home right in time for lunch. Christian was good for Daddy so he could work pretty well in the morning.
Saturday it was COLD here and we figured that our neighborhood’s Fall Fest, to be held in the afternoon, was not going to be much fun. After we all bundled up to stand the temperature (45 degrees F was the high) and the strong winds (making the 45 feel like 25!) we found that almost all the activities for the Fall Fest had been moved indoors to our elementary school.
Once there, Katie “painted” a pumpkin with markers, decorated two trick or treat bags, beaded a little ghost necklace (with Mommy’s assistance), and colored a giraffe mask.
She also noticed the “fun jump” (inflatable bounce room thingy) in the corner of the gymnasium. She wanted to go in it and told us so. We figured when we told her she had to wait in the long line, she wouldn’t want to wait. But, to our surprise, she obediently took off her shoes and proceeded to wait in line with her hands behind her back. It was amazing! She then had to wait even longer as the parents manning the jump wanted to get kids who were of the same age/size together in the jump to not have any injuries.
So, luckily, Katie was paired with another boy and girl who looked to be about 2 or 3 years old. Katie has never been in one of these things and it’s safe to say she LOVED it! She would try so hard to get to her feet, then jump and then her legs would fly out from under her and the biggest grin would come across her face as she landed on her butt, again and again. We were laughing hysterically at her various expressions and were so glad she got to enjoy a few minutes in there. She even voluntarily got out which relieved us as we figured we’d have to send another older kid in to retrieve her out of there. She also saw a few of her friends from around the neighborhood and thought that was fun too.
After all that she announced that she wanted to go home. Considering she had two doses of steroids under her belt, we thought it was a nice hour that she spent having some fun. And, we didn’t miss the tractor/hay rides that were being offered outside in the blustery cold.
Saturday night we went out for dinner. We just love a challenge and figured we’d try our luck with both the kids. Christian was fine and ate his cereal and veggie meal while we waited for our food. Katie was really good during dinner and thankfully our waiter brought out Katie’s meal out before ours. She has been showing signs of the effects of steroids by wanting LOTS to eat at meals. (Typical lunch this week was a piece of pizza, one veggie hot dog, a handful of grapes, a small jar of veggies, a glass of milk, a small cookie, and then some of Mommy’s lunch. Typical dinner is unlimited amounts of pasta or mashed potatoes. Her constant request has been pasta this go ‘round with steroids, though I’ve been able to convince her otherwise.)
Sunday Katie and Christian stayed with Daddy while I went out to a friend’s for lunch. Katie helped Daddy rake leaves. She was very proud of herself for being such a good helper.
Monday we didn’t send Katie to her school program again as she was on steroids. We figured that she would be less than happy there and possibly give the teachers a hard time with her attitude. Katie requested that we finger paint. I told her we’d try it if Christian took a nap. He didn’t want to sleep, but he seemed happy with all his toys, so I got brave and brought out all the painting “equipment” consisting of a big old t-shirt to cover Katie’s clothes, a wet rag to address a possible spill, newspaper under her work of art, and paint. She was very patient with the whole process and very neat! She did at least 15 original works of art. She gave a special one to Daddy when he came home for him to post at his work. : )
Today Katie had fun with her friend John. Since we didn’t see him last week, she really wanted to get together with him. She started “calling” John on her play telephone last week and speaking German to him: “Wie geht's?” “Wirklich” or “How are you?” “Really?” It was so cute to hear her having a conversation. And, just like Mommy, she would tuck the phone under her ear with her shoulder and continue “working” (i.e., playing) in her toy kitchen. We met John and his mom at a local wildlife rescue center to visit the birds, turtles, fish, and small animals there. They both enjoyed it and we’re glad we were able to get out inbetween rain showers. We then came back to the house to eat lunch and let the kids play here for a while.
Christian continues to grow up almost instantly. He is eating the various jarred foods just fine. He’s also got a second tooth coming in on the bottom now too. He’s just started doing “raspberries” on his own and enjoys, of course, doing these mainly during meal time, to our dismay! Katie seems to be encouraging him by doing the same. I see that they are going to team up against us now. Argh! We may have to put up a wall on the dinner table to keep them from giving each other ideas!
And, as I predicted in the last update, Katie has officially lost the word, “wawer.” She now says, quite plainly, “water.” I know this is good, but it’s just happening so fast!
She is also quite proficient at putting on and taking off her shoes and jacket when we go out. I have been making sure to get her shoes with only Velcro, slip on, or zippers and she does great. I stay away from laced shoes which I know she can’t handle.
And, when getting ready for bed, she takes all her clothes off and puts on her own pajamas! She is also very interested in brushing her own teeth and practices during the day!!
She recently figured out how to unscrew off tops, so the toothpaste, soap containers, door knobs, bubble containers, and such are no longer safe to leave around! And, she has also figured out that the same trick works on the cats' treat container. So...Chloe and Cleo have now been showing much, much, much more interest in her as she will (if allowed) give them treats morning, noon, and night!
We also think she’s ready to try potty training too, so after talking with a number of friends who are also done or going through this phase, we’re going to take the plunge (literally and figuratively) sometime soon when we’re home for several days in a row, I’m ready to clean up lots of accidents and wash lots of laundry, and it’s not a steroids week (which tends to make Katie drink and pee a lot). Sorry if that’s TMI.....
One last tidbit. Tonight I got a call from some survey. They wanted the female head of household who travels. I said that was me. He asked me to think about the hotel stays I’ve had in the past 12 months for 6 days or longer at the rate of $138 (nice round figure, huh?) or more per night. I told him, “Not this year.” He didn’t get what I said. He then asked again and I said “I haven’t stayed at any hotel that long in the past 12 months.” He then asked for the male head of household. I said, “Look, we just had a baby and haven’t stayed anywhere that long in the past 12 months.” He said, “Oh, I’m sorry.” and hung up.
Later, I was thinking about it. Maybe I should have considered the hospital stay with Katie…at several thousand dollars a night. Do you think he could find “University of Chicago Children’s Hospital” on his hotel list? : )
The official Katie’s Cheerleaders shirts are now being produced. I expect to have them in hand to give/ship to those who ordered them by November 5. Thanks to all for supporting our team for The Leukemia & Lymphoma Society with your t-shirt order!
We’re off to Kentucky this weekend for our long awaited 2004 vacation. We’re staying with our friends there and hoping to just see some different scenery. We’ll try post an update again next week when we return. It’ll be Christian’s first overnight away from home.
Katie’s next clinic visit is Friday, November 12. We are hopeful that her counts will be high enough to start LTM (Long Term Maintenance).
Thanks, as always, for all your continued thoughts, prayers, and interest in how Katie’s doing. She’s doing great thanks in part to your prayers!
Love,
Amy, Kevin, Katarina & Christian
Friday, October 15, 2004 5:28 PM CDT
News Flash! Katie’s clinic visit today went well. The ride there was long (almost 2 hours!) due to the rain and how everyone forgot where the road was when it’s wet. [Hint: same place. Please keep driving. The highway is meant for travel faster than 30mph!]
Katie had her spinal tap and the initial results are clear. Final results are due on Monday, October 18. She also got her flu shot and other chemo today. She handled it all very well and got to pick a toy out of the toy chest at clinic. She chose some plastic pig-like small happy meal-type toy that made her happy!
She slept on the way home. Thank goodness the ride home was only an hour long!
Tonight starts the five-day long steroid pulse. Ugh--for her and for us. Please pray she handles them well and, in turn, we can handle her!
Her next scheduled clinic visit is Friday, November 12. If her counts are good, she will start Long Term Maintenance (LTM)! Yay! LTM is a repeating monthly cycle of treatment that will continue until treatment is done…sometime in early to mid-2006. We might even find out when that date is when LTM starts so we’ll let you know too!!
Have a good weekend!
Love,
Amy, Kevin, Katarina & Christian
Monday, October 11, 2004 9:30 AM CDT
Thanks for checking in on Katie. She continues to do very well. We've had a very active week to prove how well she's been feeling!
She did very well at her little "school" program last week on Monday. So...two weeks into it, we're now going to experience a three week delay. This Monday (today) is Columbus Day and there's no school. Next week she's on steroids, so we're not sending her to school. And, the following week we're taking a long weekend vacation and won't be home on that Monday to send her to school. Needless to say, we'll be starting over with her getting used to the school routine once again. She does like getting her "packpack" (known to the rest of us as "backpack") ready and we also got a book about a teddy bear who goes to preschool that we've started reading quite often.
Tuesday Katie met up with her friend John at a local farm/zoo. We had a great time there and Katie had fun picking out yet another pumpkin to add to the growing collection on our front step!
Wednesday our German Spielgruppe (Playgroup) met at a farm and then pumpkin patch. We added still yet another pumpkin to our collection (we're at 5 large and 2 mini size pumpkins now in case you've lost count). Katie and Christian also experienced their first hayride. Katie had a great time!
Thursday Katie had her German class and had a fun time impressing her teacher by counting to 10 in German on multiple occasions. She actually can count to 14 perfectly in German as that is how many stairs we have in the house. She is also quite proficient counting her fingers and toes as well as Christian's fingers and toes in both English and German!
Friday was our neighborhood playgroup where Katie made several new friends. Since it was raining, all the kids were cooped up inside, but played very nicely. Katie was happy that her new friend had a doll stroller AND doll car seat to play with! Our new little playgroup will work out well with Katie's Friday clinic visits. Katie will likely only be going to clinic monthly soon so we'll have more Fridays open. (Katie's next clinic visit is this Friday, October 15.)
Saturday was a big day as Katie's Oma and Aunt Kathy visited for the day. Katie made sure Oma read her lots of books while she was here. Unfortunately, Katie was a bit shy around her Aunt Kathy, but she did finally give her a hug! We all had a great time sitting outside enjoying the beautiful weather. Katie showed off by blowing bubbles for them.
Sunday was Naperville's Oktoberfest Family Day. We trekked over there to see what there was to offer. Katie got herself a balloon and festive hat and she was content. The kids' activities were a bit on the cramped side (crammed in a small portion of the tent) and overtaken by the main stage events in terms of sound, but we made the best of it. We then went over to the library to get a few new books to put into rotation here at home. Katie also helped assemble our scarecrows (two scarecrow "kids" playing soccer) and put them out front.
One thing we've come to realize is that Katie's growing up. Well, it's not like we didn't notice it, but there are little things that change suddenly. For instance, for some odd reason, Katie has always called a pacifier a "pah-du-du." I would always say pacifier and she would always say "pahdudu." Well, she hasn't used a pacifier in months, but Christian still does. When he needs one, she would say "Christian needs a pahdudu." Just this week, she started saying "Christian needs a pacifier." And, if you ask her, "Say pahdudu." She will answer back, "Pacifier." I guess I really liked hearing the word pahdudu come from her as it was totally her own made-up baby word...and now she's grown up and lost it! : ( I guess "wawer" (for "water") is next to go, eh?
She's also shown a keen interest in letters. She was playing with an alphabet puzzle on Sunday. She told me that "GBM" spelled "Mama." I explained to her how to spell "Mama," but I think it's going to be a while before she catches on. Regardless, she's really into letters and has been drawing very controlled shapes on paper and then announcing that she drew her name, "Katarina" or "Christian." The one thing is that she may be programmed to handle either Hebrew or Arabic better than English or German as she's taken to writing her strings of letters from right to left instead of left to right! : )
Wowsers! We are just $48 shy of $7,000 for Katie's Cheerleaders Light the Night fundraising. All funds collected/donated online by November 1, 2004 will count toward this year's fundraising. We've heard that the winning team raised $13,000. So...to everyone I would like to announce that Katie's Cheerleaders 2005 Light the Night walk fundraising goal for The Leukemia & Lymphoma Society is an ambitious $15,000. Can you help us reach this goal next year?
On the little brother front, Christian is ready to start chomping! His first tooth, on the bottom, started sprouting up on Wednesday of last week! Soon he'll be eating us out of house and home! His 6 month check up was Thursday and he's still off the charts on height and weight. He's 29" tall and weighs 23 pounds, 9 ounces. Our bruiser will be taller and heavier than Katie by Christmas once he starts eating more solid foods! Katie's only 30 pounds and 36" tall...and 20 months older than her "little" brother!
Christian has also started eating some baby jarred foods now. He's eating them, but not without giving us bizarre facial expressions to show his shock/surprise/dismay in the new and interesting tastes and textures we're making him experience. He still loves his cereal though!
Speaking of facial expressions, we've updated the kids' websites this weekend. Visit their websites to see their latest poses! Enjoy!
Thanks for checking up on Katie and for all the continued thoughts and prayers. We appreciate them!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, October 5, 2004 10:06 PM CDT
Thanks for checking in on Katie. She’s doing well!
First, Katie had a GREAT time at “school” on Monday. She lasted the entire 3 ½ hours on her own and said she had a fun time. The teachers said she did great! She was happy to see me and Christian when we went to pick her up, but she didn’t burst into tears when we got there. As I promised her for going to school, we then went pumpkin shopping and got our stash for fall decorating. : )
Secondly, I want to address a big issue. As I have mentioned before, I am super queasy about all blood-related things. It’s like my mind goes into overdrive and I find myself feeling faint/light headed when dealing with blood-related things. Amazingly, I handle Katie’s situation well as I guess I just have no other choice. One thing that I decided to start doing was to donate blood regularly. If Katie can be strong and brave through all she is going through, the least I could do is get over my “issues” and donate blood. Kevin has joined me to also make donating blood one of his routine things to do. He last gave blood on Tuesday, September 21.
I gave blood for the third time (in my entire life) tonight. By the way, at least in the Chicago area, there is a shortage of blood right now. When the donation center (LifeSource) called to confirm my appointment, they asked me to also bring a friend along to donate! It means more to bring a friend to give blood than it does to bring a friend to the next Tupperware party you go to, but it’s also a lot harder to find a friend to go with you to give blood. So…my next appointment is on Thursday, December 2, 2004 in Naperville. Anyone want to join me in giving blood that evening either in person or virtually by getting an appointment in your city that same night? We could be “donor buddies!” : )
While in donating blood tonight, I also made a very big commitment. I officially joined the National Marrow Donor Program Registry. I wish there was no need for the registry, but the truth is that it is needed to save lives. I simply gave another small vial of blood and paid the small tax-deductible fee to get myself typed. I’m now listed in the national registry. Since I have made this big step, I encourage you to investigate what is required to join and see if this is something you can do.
Last, but not least, the motivating factor to get me to join the National Marrow Donor Program Registry is a little girl we’ve met online, Taylor Krueger. She is 2 years old and has ALL like Katie. The difference is that she relapsed on September 27, 2004 and will be undergoing a bone marrow transplant…once they find a match. Please say extra prayers for Taylor and her little sister, Sydney, and their family. If you have time, please visit Taylor's Caring Bridge website and leave their family some encouraging words in their guestbook.
As always, thanks for your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Monday, October 4, 2004 10:58 AM CDT
Thanks for checking in on Katie. All continues to go well and she's handling Interim Maintenance #2 very well. Her next clinic visit is scheduled for Friday, October 15, so we're just enjoying having our Fridays back again!
The big news this past week was that Katie started "school" on Monday, September 27. She started a 3 ½ hour, one day a week program at a local church. It's called Parents' Day Out, but really, it's time for me to run home, hope that Christian takes a good nap, and then try to get something done that I normally can't do with Katie running around the house. : ) (This is a program we had just started right before Katie was diagnosed with Leukemia in March, so we are just getting around to trying to restart it now.) Anyway, she handled the first day back pretty well. She was a bit weepy and they called me to come in about an hour early to get her. She did say as we were leaving that she did want to go back...so she's back there again today although she did protest it by saying, "Mama stay here." They do crafts, read books and have story time, go out to play on the playground, eat lunch, and have general play time. It's a small group of kids with two teachers and two parent helpers, so there is plenty to keep her occupied.
Last week was really nice weather-wise around here so we tried to get out as much as possible. Tuesday Katie met up with her friend John and we ate lunch outside (in the almost-blustery wind!) and then played at a local playground and walked around the Riverwalk. The kids had a blast feeding the ducks and geese with leftover bread and crackers. Katie is suddenly interested in what all animals eat. We'll be eating a meal and suddenly she'll ask, "Mama, geese eat hay?" Then we have to go down the list of animals that might or might not eat hay. It's pretty cute...and keeps us on our toes figuring out what different animals DO eat!
Wednesday was Spielgruppe (German playgroup) which we hosted at our house. Katie had fun with her friends Karl and Nicholas as they all played in the backyard while we enjoyed the outdoors. The highlight of the afternoon was wagon rides around the yard.
Thursday we ended up skipping German class as the teacher had a cold. We hope to resume going this week. Katie really enjoys the class and now that Christian is older, he is enjoying such activities too!
Friday I had hoped to get the kids to take a nap in the morning. Ha! Anyway, we went to the local playground and Katie loves this one tall, curving slide. She crawls up the chain ladder and steps and then flies down it. Well, she also loves to *try* to go up the slide on her own. (Yelling often, "Mama, no help!" whenever I try to put out a hand behind her or near her!) I turned around for a second to do something with Christian and lo and behold, she was about 1/3 of the way up the slide on her own! I spotted her and she continued to crawl up the slide by herself...all the way to the top--and this slide is quite tall and steep! She did this at least 4 times and was SO proud of herself. Her strength surprises us sometimes!
After all this exertion, we all got cleaned up and went for Christian's 6-month (!) photos. Despite having to wait about 45 minutes past our appointment (due to a backlog of people and then the camera breaking!), the kids were so good! Christian was the usual ham for the camera and then Katie surprised me by modeling for photos like a pro. She posed with Christian and then did some on her own. I'll post those as soon as we get them back.
Saturday we went out to Red Oak Nature Center and Katie showed her Daddy what a cool place it is. She showed him the animals that they have in the education building and made a point to show him each snake. And, she demonstrated how to use the binoculars to do bird watching. Then we took a hike along the Fox River and she and Daddy had a grand old time throwing rocks in the river and climbing in a small cave together. It was really a pretty day to spend outside and Christian enjoyed seeing all the colorful leaves too.
Sunday we went to Katie's friend John's birthday party. She had a fun time playing there and meeting a new friend too! She also helped to decorate the giant number 3 chocolate chip cookie we made for him. Katie's going to be a great Christmas cookie baker's helper this year!
Christian was 6 months old on Friday, October 1. It's hard to believe how fast time flies. He's now eating cereal three times a day and we'll probably start some veggies next week. He's an eager eater and doesn't have any problems finishing off whatever we give him! : ) He's figured out how to roll from tummy to back and back to tummy and, when he is on his tummy, is already starting to scrunch up his legs to try to figure out the crawling thing. He is so anxious to follow Katie. You can see him track her every move. And, he finds her - and the cats - amusing to watch by smiling and laughing!
Our Katie's Cheerleaders team total for the Light the Night Walk for The Leukemia and Lymphoma Society is about at $6,400. I just found out today that the winning team raised $13,000 this year. So, everyone, can we beat that winning team's total next year? : ) I hope so!
Thanks for keeping Katie in your thoughts and prayers as always. She is doing great!
Love,
Amy, Kevin, Katarina & Christian
Monday, September 27, 2004 10:58 AM CDT
Thanks for checking in on Katie. She's been feeling great lately and we're glad for that as we can all enjoy the wonderful weather.
The Light the Night walk on Thursday, September 23 was GREAT! The weather was simply beautiful and was so nice to be outside in the evening! We had, at one point, 29 people for our team! It was so nice to see everyone come out and walk with us and support The Leukemia & Lymphoma Society. Everyone on our team carried the lighted, flickering balloons proudly in the dark evening sky. Katie loved holding her white balloon signifying a survivor while the rest of us had red balloons signifying a supporter. (Christian slept the entire walk happily in the stroller and we just tied his balloon to the stroller!) We also carried a gold balloon for our team since we raised over $1,000. In fact, we raised over $6,000 as a team! We are still in awe that we reached such an amount from the generosity of our friends and family and hard work of our team. Thank you for supporting Katie's Cheerleaders! I'll post photos from the walk as soon as I can. Please thank Deb our official Katie's Cheerleaders Light the Night walk photographer for capturing wonderful pics for us!
Friday suddenly became an open day for us after a new neighborhood playgroup get together was canceled due to too many of the kids (and parents!) being sick. So...I decided to take the kids to the zoo instead. They had a great time and Katie requested that we see the rhinos (of course!), snakes, and dolphins. We spent an inordinate amount of time in the reptile house and Katie studied the snakes and lizards there. I am curious as to why she enjoys these scaly creatures so much!
Saturday we did an impromptu trip up to Lake Zurich. We had heard about an Oktoberfest celebration going on up there with some kids' activities. We did the obligatory carnival part where Katie enjoyed a train ride and "won" an inflatable pink elephant (her choice!) in one game. Then we moved under the entertainment tent where the company that runs her German class was doing a presentation. We didn't really expect to see her German teacher there (being so far from home), but lo and behold, Katie got to see Erin! She had a great time participating in a few activities on the dance floor area during the presentation and loved going home with a balloon of her own too! She had a blast and Christian had fun watching all the hub-bub.
Sunday we didn't do much except hang out at home and clean out the garage. Drudgery for us; fun for the kids to observe. Katie had a grand time "driving" her new convertible car and police car ride-in toy vehicles that we found at our neighborhood-wide garage sale for a steal. Her favorite activity, to our chagrin, is to drive one of the vehicles into the other and crash them!
This week is the usual busy schedule. Katie's doing great and isn't scheduled for a clinic visit until Friday, October 15th. Thanks for keeping Katie in your thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Thursday, September 23, 2004 12:36 AM CDT
Thanks for checking in on Katie. She continues to do well and the last dose of steroids was on Wednesday morning. She's free of them now for another three weeks. Yay! We have to admit that this 5-day pulse of the steroids wasn't nearly as bad as we anticipated. She had one really moody day on Sunday and that was really the worst day. The rest of the time she's been about as agreeable as an average 2-year old! The final spinal tap results came back on Monday all clear. We were glad to hear that once again!
Sunday we aborted our trip to the Fine Arts Fair in downtown Naperville. Although it was outside and not overly crowded, we didn't stay long as Katie wanted to go in booths where there were lots of fragile (and expensive!) things and we didn't feel like paying for a lot of broken pieces to take home!
Monday was errand day and Katie and Christian both handled it well. We have been spending lots of time outside too since the weather has been so pretty.
Tuesday Katie got to see her friend John at the local farm zoo. We all ate lunch together there and Katie and John amused themselves after lunch by flinging and chasing John's sippy cup all over the grassy picnic area. Next time we need to remember to bring a ball with us instead... : )
Wednesday Katie went to Spielgruppe (German playgroup) at a nature center. It was a fun outing and we all went for a short hike along the Fox River. It was very pretty and Katie had a great time with her friends.
We aren't going to German class this week as they have advised us that hand/foot/mouth disease is running its course among the children attending the class and families with kids in classes there. We will likely stay away for a couple of weeks to make sure Katie avoids catching this.
And...tonight is The Light the Night walk for The Leukemia & Lymphoma Society! We are very excited to meet up with our team tonight. And, if you find yourself available this evening and in Naperville, please join us. Just look for the Katie's Cheerleaders banner and rhinos holding "babboons." A great big thank you to everyone who supported us. We will let you know what Katie's Cheerleaders final tally is for fundraising, but as of today, we're just over $5,000! It's not too late to donate; just visit Katie's Light the Night site to make a secure online donation. Photos of the event to come!
The one thing that is a let down for the walk is the fact that the t-shirts we ordered and picked up yesterday looked horrible. In fact, the printing quality was so horrendous that we could not accept them. So...we're not going to be able to unite our team tonight and wear the same t-shirt which is unfortunate. However, we are going to make a commemorative shirt with the same design and have that available as soon as we can. (We will be using another t-shirt vendor to make sure the new batch of shirts comes out nice!) Thanks for your support, patience, and understanding in the delay. If you didn't order a t-shirt the first time around, let us know if you'd like one. You can view the t-shirt design online.
Thanks for your continued thoughts and prayers for Katie. We appreciate them!
Love,
Amy, Kevin, Katarina & Christian
Saturday, September 18, 2004 2:30 PM CDT
Thanks for checking in on Katie. She’s doing great AND she finally started Interim Maintenance #2 (IM) on Friday, September 17. Her counts were at the level necessary to start this next phase of treatment. She handled the clinic visit on Friday just fine, despite the fact that we forgot to bring her Duplo blocks to play with! Horror! She was amused, instead, with playdough, crayons, and books for her stay at the clinic.
Despite getting a spinal tap (initial results are clear; final results to come on Monday) with medication and another drug via her port on Friday, she ran around like a normal 2 year old all the rest of Friday. We were glad to see that.
The Hausman pharmacy, on the other hand, has reopened. She’s been off almost all meds for the past 3 weeks and we were getting quite used to not having to curtail dinner (to avoid having her eat something within 2 hours of taking some of her meds before bedtime), to not cleaning up all the medicine cups and syringes, and to not taking inventory of meds to see what needs to be refilled (and making subsequent runs to Walgreen’s). Anyway, she’s started another five-day long pulse of steroids starting on Friday night. We hope we can make it through Wednesday morning when she has the last dose of steroids for three weeks. Oh yeah, we didn’t miss the steroids either! And, we’re positive she didn’t miss taking all these meds!
This morning we ran over to a “Touch-A-Truck” event in the next town over. Katie enjoyed sitting in a few emergency vehicles and a helicopter, looking inside an ambulance and fire truck, touching a snow plow, and seeing a police dog. The highlight of the event was seeing the helicopter take off. That was a bit much for even us (it looked like it was going to crash!) and Katie burst into tears. But, she recovered enough to enjoy seeing the fire truck ladder get extended up and over all of us. It was a fun little outing. Christian enjoyed it all too and didn’t even cry when they turned on the police siren.
We’re off to a friend’s BBQ this evening. Hopefully Katie will enjoy being out and running around as the weather is gorgeous and she still seems to have plenty of energy.
Thanks for stopping by. We appreciate everyone’s continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Thursday, September 16, 2004 9:31 AM CDT
Thanks for stopping by to check in on Katie. Things continue to go well. She continues to run around like a crazy child so we know she's feeling good.
Katie's counts rose to the necessary level to start the IM (Interim Maintenance #2) phase on Monday, 9/13. We were happy to see that despite the fact that Katie showed signs of a cold on Sunday night and Monday morning. The runny nose ended as fast as it arrived, so we think that it also could be allergies. She will start IM on Friday, 9/17, provided her counts are still good. And, with starting IM, that means five days of steroids. Ugh! A cranky, temper-tantrumy 2-year old on a medication that makes them more cranky and irritable along with hunger. FUN!
We've sort of resumed a busy schedule once again. Katie and Christian love to run everywhere, see new things, see friends, and do stuff...so we go, go, go.
Sunday we took it easy since it had been a real whirlwind week last week. We ate dinner out in the gazebo and after eating his rice cereal, our little guy, Christian, fell asleep lying on the patio table by putting his thumb in his mouth and slowly bobbing forward until his head was resting on the patio table! Monday we laid low as Katie still had signs of a cold. The home nurse came to take her blood for counts and was very good for a new home nurse, Nurse Barb.
Tuesday we didn't do too much either, but chores and errands. Tuesday night I went to pick up our banner to use for The Light the Night walk. Since we've already raised $1,000 for The Leukemia & Lymphoma Society, we get our own banner to carry. I'll be decorating it this weekend and unveil it at the walk next weekend. Stay tuned for photos! By the way, Katie's Light the Night fundraising amount has hit the $4,500 mark!! Wow! We also ordered the t-shirts this week and have a few extra adult size L and size XL available on a first-come, first-served basis. Let us know if you'd like a shirt. They're $8 each and each sale gives $0.50 to The Leukemia & Lymphoma Society.
Wednesday we had a one year follow-up appointment with her orthopedist for a hip problem she had since birth. What was really sobering about the visit was seeing on the new x-rays a line on her bones where, as the doctor described it, a "trauma" (i.e., leukemia) occurred. I likened it to rings on a tree. By reading the rings in a tree stump, you know when there were years of drought and such. It's like Katie's bones have this line showing us where growth was interrupted. All is well with her hip development and he'll see her again in one year.
After that appointment, we went to a local open air mall to soak up the sun and smell the flowers and admire the water fountains and pools. Katie and Christian had a grand time. When we went into a couple of stores, Katie was looking at the racks of clothes with me, fingering each piece of interest. I watched her do this for a while and she would occasionally ask me, "Mama, how about this one?" and hold it out for me to see. I finally asked her what she was doing as what she would choose seemed random. She answered quite simply, "I'm shopping." I guess I'm raising a shopper. : ) Wednesday afternoon we went to our German playgroup and Katie had a grand time with her friends.
If you are in the Chicago area and want to join us at The Light the Night walk in Naperville at the Riverwalk on Thursday, September 23, please, please come out and join us! Our team, Katie's Cheerleaders, is always looking for new members! : ) If you're planning on walking that night, let us know and register to walk and make sure you specify you're joining the team "Katie's Cheerleaders." Katie would love to see YOU at the walk!
As always, thanks for checking in on Katie and for the continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Saturday, September 11, 2004 11:05 PM CDT
Thanks for checking in on Katie. All continues to go well here. We still aren’t officially done with Delayed Intensification though. Katie’s counts were going up as of last Thursday, 9/2 and then, quite unexpectedly, one count went way down this past Thursday, 9/9. So…she didn’t start the next phase of treatment on 9/9. She will have her blood counts taken again on Monday, 9/13 and she may be able to start the Interim Maintenance phase on Tuesday, 9/14 if her counts reach the level needed. This is only the second delay she’s had during her treatment, so we’re pretty lucky (and spoiled in a sense) that things have gone so smoothly thus far. Her doctors were not concerned with the one low count. They attributed it to a virus she might have that is not showing any outward symptoms, but her body is nonetheless still fighting.
Despite this little roller coaster ride, we’ve been busy which is good for all of us. Last Saturday, 9/4 we went to visit Grandma for the day which was nice. Katie again had a blast and Christian enjoyed seeing Grandma’s house from his new perspective--sitting up!
On Labor Day we went to a friend’s house for a BBQ and Katie had a grand time running around their huge farm and playing with her two friends there. She definitely had energy to spare that day!
Tuesday Katie spent the day running around with another set of friends. Wednesday we went to the zoo and Katie helped me celebrate my birthday there. She insisted that many of the animals had balloons for me. It was very cute! We also met up with several friends there and Katie had a really nice time playing with everyone.
Wednesday our friends who we met at the zoo came to stay with us for a few days as they were visiting from Kentucky. Their two month old daughter, Frankie, was a good comparison tool for Katie: “Frankie small; Christian big; Katie big.” : )
Thursday Katie started her German class again. There are a few new children in the class this session so she’ll make some new friends there. Nurse Joe also visited on Thursday to take Katie’s counts. Katie did really well with him once again.
We didn’t do anything special on Thursday with our friends, but we went out for deep dish pizza that night for dinner and discovered that Katie will now eat a slice of pizza herself. She’s never been a big pizza fan, but now she suddenly likes it…and it was spinach pizza too!
Katie's counts came back at dinner time on Thursday and we really thought that there was a mistake since the one count (the ANC) was so low. So, we ended up going to clinic on Friday (just a two hour trip downtown due to…school starting, sun glare, a spare shoe on the shoulder, bad luck??) to check her counts again and be ready to start the Interim Maintenance phase by being right there. Well…in one day the counts came back up, but not high enough to start the IM phase so we headed home. (It took less than an hour to get home; go figure.)
Friday afternoon we all took a hike in our local forest preserve. It was a gorgeous day to be outside and we all had a great time while all the kids slept!!
Our friends left this morning and then we just ran around enjoying the gorgeous weather again. Katie and Christian both loved being outside today and we even ate dinner outside this evening.
Christian continues to do well and we started him on rice cereal this week. He’s loving it and taking it all without any hassle. Of course, he has to save up all his sneezes for when he has a mouth full of cereal. Blech!
Our Light the Night walk fundraising for The Leukemia & Lymphoma Society continues to plow WAY past our original $1,000 goal and has reached over $4,000!!!! Check the progress on Katie’s Light the Night site! Thank you to everyone for your generosity toward this good cause. We are overwhelmed!
And, our team, Katie's Cheerleaders, is going to be HUGE on September 23 for the walk! I created a shirt for the walk with my original design. Also, we’re taking orders for the t-shirt until Monday, September 13. Please call or e-mail us ASAP if you’d like a shirt. Don’t forget to register if you are planning to walk with us too.
Lastly, we updated the kids’ websites on September 5. Enjoy!
Thanks for checking in on Katie and thank you for the continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Thursday, September 2, 2004 10:55 PM CDT
Thanks for stopping by to check in on Katie. All your thoughts and prayers are really working!
All of Katie’s counts are UP! Yay! The good news is that her hemoglobin is rising now which means 1) she doesn’t need a blood transfusion and 2) no clinic visit on Friday! Her ANC is also rising steadily so we can resume normal activities!
Nurse Joe came this morning and Katie was once again very good for him. She even smiled for him and waved goodbye to him! We got her blood counts back before noon and proceeded to go out with her friend John this afternoon and spend time at a playground. Katie had a blast on the swings, slide, and just climbing, running and playing. It’s been about two weeks since we were at a playground and she obviously missed going to one.
Oh, Christian had his first ride in a swing today too. He enjoyed it! : ) I put him in the swing in between Katie and John and he kept turning to watch them each swing so much higher and faster than him. I think he is eager to do everything that the older kids can do…at 5 months old! : )
Since Friday is now a clinic-free day we’re not sure what we’ll do with the day, but Katie said she’d think about what she wanted to do. I’m guessing we’ll be visiting a zoo or farm tomorrow!
Saturday we’re off on a day trip to visit Grandma. Sunday we haven’t figured out yet. Monday we’re off to get together with a few friends. And…later in the week, Katie and Christian’s newest (she was just born in July!) friend, Frankie, will be coming to visit us.
So…we hope you have a great Labor Day weekend! We are going to be out and about and celebrating the end of summer. We didn’t really think we’d be able to do much or go anywhere over Labor Day weekend, so our list of plans is impromptu and we’re looking forward to it all. We’re glad that Katie is feeling well and eager to get out and do things as well. Delayed Intensification is scheduled to end on September 9. Hooray!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, August 31, 2004 9:05 AM CDT
Thanks for stopping by to check in on Katie. Last week was a quiet week...sort of. Since Katie got her last dose of the Ara-C on Monday, 8/23, we expected her counts (and susceptibility to infection) to increase as the week wore on. We didn't go anywhere and I, suddenly turning into a nocturnal creature, visited grocery stores, Target, and the like under the cloak of darkness after the kids were in bed.
Nurse Joe arrived on Thursday to take blood to get her counts. Katie really likes her home nurse. He's great with her and makes sure she's involved in the whole process from helping to squeeze the blood pressure cuff ball to zipping up a bag for him! The blood counts came back lower than the week prior as we expected.
And, as half expected, she started running a low grade fever on Saturday night, all day Sunday, and overnight Sunday into Monday morning. Through all of this however, she was acting normal and running around like a typical 2-year old! So, it was quite a contradiction. After numerous calls to her doctor, we were able to avoid an ER run this weekend and took her to clinic on Monday morning.
We are convinced that by packing complete bags for Katie (clothes, toys, books, food, EVERYTHING) and bags for us (toothbrush, change of clothes, fresh fruit - which seems to not exist in hospitals, snacks, and a calling card, etc.) and loading them into the car was a great insurance policy to not have to go to the ER or have Katie admitted to the hospital for a stay.
At the clinic on Monday, they took blood to get her counts and to our surprise (delight even!) her ANC count (susceptibility to infection) is going up already! We thought for sure we'd still see lower numbers. However, her platelets and hemoglobin are still lower than they were on Thursday. Her hemoglobin is now low enough that she should, technically, get a blood transfusion, but since she's still energetic, we and her doctors felt we could hold off to see if she'll rebound a little on her own by this Thursday.
At clinic on Monday they also took blood to grow cultures to see if she has any infection brewing in her system. With her higher ANC, it seems unlikely, but we do have to wait for that report.
Nurse Joe comes back on Thursday to take blood for counts again. We will then learn if we need to go to clinic on Friday for anything.
The highlight last week for Katie was having her friend John stop by to play for a while. She really enjoyed some playtime with a friend. Another highlight was getting new Bear in the Big Blue House gym shoes. She won't stop talking about these new shoes! (In case you didn't know, Katie LOVES the TV program Bear in the Big Blue House. We record it regularly for her and even have a DVD of a few episodes in German. She loves them both equally.) Her amusing comment for the week - insisting that porcupines are pinecones. She figures that the word pine is in both words, they're both "prickly things," and therefore, they are one and the same. Good reasoning, huh?
Christian's wants to announce to everyone that he is a big boy and can now sit up on his own, unassisted. He loves the wider view of his world and enjoys playing with piles of toys in this new position. He is quite the steady guy too. He very rarely falls over and when he does, it's pretty controlled. He is very proud of himself as are we. He also loves the cats and smiles at them when they walk by him! His 5-month birthday is September 1! Time really flies!
For those of you who were following the training of our friend Mark for his triathalon or donated to his Team in Training fundraising for The Leukemia & Lymphoma Society, he finished the triathalon on Sunday. Way to go Mark! We weren't able to go see him cross the finish line on Sunday due to Katie's low counts and persistent fever, but we hope to have a photo of him crossing the finish line soon for you to see. With many of you donating, he raised over $1,800 in memory of his grandmother and in honor of Julie Sutherland and our very own Katie. If you're interested, it's also not too late to donate to his fundraising either.
This past week we've been overwhelmed with continued generous donations to The Leukemia & Lymphoma Society for Katie's Light the Night walk. We've surpassed the $3,000 mark; check the progress on Katie's LTN site. We are humbled by everyone's support. Our team is steadily growing and you can register to join our team and walk with us on September 23. We would love to have you walk with us! And, since we've raised over $1,000 already, we will be carrying a banner during the walk so you can't miss "Katie's Cheerleaders" now!
Thanks again for checking in on Katie. Everyone's thoughts and prayers are working on her behalf.
Love,
Amy, Kevin, Katarina & Christian
Monday, August 23, 2004 1:57 PM CDT
Thanks for checking in on Katie. Maybe you stopped by because you heard us all dancing the port-a-cath "de-access" dance? Katie had her last dose (the 8th one) of Ara-C this morning and then when she was de-accessed (needle and tubing taken out of her port after living with it for four days) we all cheered, clapped, and danced around the house. Thankfully, Katie's been feeling good enough to do such celebrating!
She's been handling the Ara-C very well. Nurse Joe has been great and she's taken to him pretty well. He was here on Friday to access her port and then give the Ara-C and then returned on Saturday and Sunday to give more Ara-C and then today to give the last dose of Ara-C and then de-access her. Nurse Joe said that she was the most patient and calm 2 year old he's seen while accessing her port on Friday; she didn't cry at all! We'll see him again on Thursday for a blood draw to see how her blood counts are doing. Right now her blood counts are headed downhill as expected. We're going to be lying low this week and probably next week until her counts start rising again.
Overall, she is eating less than normal (probably due to nausea), but sleeping well and playing/talking/learning like any other 2-year old. Every day she says something that makes you wonder how she put that thought together or where she got the phrasing from. It's hilarious sometimes!
It was another quiet weekend for us though as we just didn't want to take Katie out and risk her getting sick during a meal as she's been getting the Ara-C right before lunchtime. We ran some errands and got take out food a couple of times, but that was about it. Oh, we played lots of t-ball and catch in front of the house and drew lots of things with chalk and blew lots of bubbles too. Katie enjoyed all that!
Christian's big accomplishment this weekend was turning over from stomach to back and pushing himself up with locked arms while on his tummy. He's changing and growing so fast!
And, thank you again and again and again to everyone who has donated to Katie's Light the Night walk. We've beaten our $1,000 goal for fundraising and are quickly approaching the $2,000 mark. Check our progress on Katie's LTN site and donate to The Leukemia & Lymphoma Society. We are pleased so many of you are giving so generously to The Leukemia & Lymphoma Society. There's still time to join our team, Katie's Cheerleaders as well and walk with us on Thursday, September 23.
Thanks again for checking in on Katie. She's doing great and benefiting from everyone's thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Thursday, August 19, 2004 2:42 PM CDT
Thanks for stopping by to see how Katie's doing. Week #7 of Delayed Intensification almost down, but due to one delay, still two more weeks to go...
We are happy to report that Katie handled the first 4 (of a total of 8) doses of the Ara-C (cytabarine) very well. The first dose was at clinic on Friday, August 13. She then got a dose at home with a home nurse on Saturday, August 14; Sunday, August 15; and Monday, August 15.
She stayed accessed through her port (needle and tubing under her shirt) for the four days. One thing we learned was that she HATED seeing the "stuff" hanging out of her. She didn't mind it being there if she couldn't see it while it was under a shirt. But, to change her clothes, give her a bath, or check on it, she would bawl. She was so happy to get de-accessed on Monday. She kept saying "no more stuff" and pointing to her chest after she was de-accessed.
She also took to the home nurses very well. We had Nurse Joe on Saturday and Monday and, as luck would have it, he took German at some point in his past and could recite a few lines of dialog and say a few things to Katie. That seemed to allow her to warm up to him. Nurse Kim on Sunday was also great and she knew some German too. Tell me, what are the chances of both home nurses knowing German!??!
We didn't do much of anything over the weekend as we didn't know how Katie would be reacting to the Ara-C. We were prepared for her to be quite nauseous, tired, and irritable. Instead, she really was herself all weekend. We were grateful. The only time she heaved a bit was when she saw Christian spit up a bit, but she recovered as soon as I took him out of the room to clean him up.
Tuesday we went to the zoo and Katie had a great time with her friend Sarah and Sarah's brothers. It was an impromptu trip and just luck that Sarah was there with her family that same day. Wednesday we went to the German playgroup. Katie had a great time running around the playground and feeding the ducks for 1 ½ hours. But, when she got tired, she got irritable and we had to go RIGHT THEN! Today we went to German class and she had a nice time. (She won't start up the German class until September 9th as they take a two week break now.) We also went to walk around downtown after her class, but she fell asleep while mom was looking through racks of *boring* clothes for daddy. I called it quits and we went home where she then asked to play outside. We were out for an hour where she drug out every outside toy she has to play on or with.
Tomorrow the home nurse (Nurse Joe) will come to access her port again and then administer dose #5 of the Ara-C. He will return on Saturday, Sunday, and Monday. If Katie's feeling well on Friday afternoon, we may get together with her friend John. The weekend and the next couple of weeks aren't too busy as we just don't know how Katie's going to be doing.
We are still on the lookout for fevers and dropping blood counts. If her fever reaches 101, they are likely to admit her to the hospital as the Ara-C causes her blood counts to do a nose dive, therefore making her susceptible to infection. So, we have been even more careful to avoid infections with tons of hand washing, clothes changing, no shoe touching, and Purell every where. Her blood counts are likely to be at their lowest point starting sometime next week for about 10 days. We will probably have a quiet Labor Day weekend as a result.
Christian has been going with the flow as usual and keeping up with our crazy schedules. His latest accomplishments have been twisting and turning and almost rolling over. He can also balance himself a lot better now and is almost able to sit up! He also has adapted to getting a bottle just four times a day-breakfast, lunch, dinner, and before bedtime. We will start him on cereal once we're past Katie's Delayed Intensification phase.
And, we must extend a special thank you to all our friends and family who have helped us already EXCEED our $1,000 fund raising goal for the Light the Night walk which will take place on Thursday, September 23. To see our current amount raised, please visit Katie's Light the Night site. You can also donate online at her site. If you'd like to walk with us that night, you can register at the Light the Night registration page. Be sure to join our team called "Katie's Cheerleaders." Katie would love to have lots of friends and family carrying "babboons" with her that night!
Everyone's extra thoughts, prayers, and messages for Katie during Delayed Intensification have been working. She's doing well and we are all grateful for that. Thank you for thinking of her!
Love,
Amy, Kevin, Katarina & Christian
Friday, August 13, 2004 11:18 PM CDT
Thanks for checking in on Katie. Week #6 of Delayed Intensification down, but due to last week’s delay, still three more weeks to go...
The good news is that Katie’s ANC (Absolute Neutrophil Count) rose to the level necessary to start the Ara-C (cytabarine) phase of DI today. Her ANC had nearly doubled in the past week. So, she’s heading into this phase pretty strong with her blood counts. Hopefully this will allow her to handle the Ara-C well.
And, the long clinic visit today was only about 6 hours total. Things went really smoothly and Katie got hydrated, a spinal tap, an anti-nausea med, and two drugs today. She was also pretty easily entertained at the clinic with mom’s bag o’ tricks. (Books, coloring books, crayons, Play-Doh, scissors, crayons, construction paper, crayons, Legos, various little toys, and did I mention crayons?) The initial feedback from the spinal tap was all clear, but we have to wait until Monday for the final results.
For the first time ever, she did not cry when they accessed her port with the needle today. I was amazed. I guess she’s getting used to the whole routine finally. She slept on the way home from clinic. (Almost a two hour drive home thanks to traffic. Doesn’t anyone work until 5pm anymore?)
She’s now accessed through her port until Monday. There is a home nurse coming on Saturday, Sunday, and Monday to give her the at-home doses of Ara-C through her port. After the Ara-C on Monday, the nurse will de-access her so we don’t have to worry about the line hanging outside of her body.
Friday, August 20 the home nurse will return to access her port, give her the next batch of Ara-C, and get her blood counts. Then she will remained accessed next weekend as well—Saturday, Sunday, and Monday. After the last dose of Ara-C on Monday, August 23 she will be de-accessed. Then she’s done with the Ara-C. Yay!
During this phase of Ara-C we need to be on the lookout for fevers and dropping blood counts. If her fever reaches 101, they are likely to admit her to the hospital as the Ara-C causes her blood counts to do a nose dive, therefore making her susceptible to infection. So, we’re going to have to be a lot more careful to avoid infections.
And, looking back on this past week, we had another whirlwind week. Saturday we visited our friends up in Wisconsin and got to see their horse, Prince Charming. Prince kept both the kids’ attention as he was trotting around the ring.
The rest of the we had two playdates with Katie’s friends, German playgroup, German class, and Christian's four month photos. The weather was quite chilly here this week. Who would have ever thought in a million years that we’d be contemplating turning on the HEAT at night in AUGUST?!
Christian had his four month doctor's appointment this week too. He got a clean bill of health along with four shots. He is also certified as an official bruiser with these stats: weight is 20 pounds, 7 ounces and height is 27 inches. For his age, he’s off the charts on both counts!
If you would like to see recent photos of the kids, we updated their websites last weekend.
Katie’s next scheduled clinic visit is not until September 10. Katie needs all your extra thoughts and prayers for the next few weeks so that she handles the Ara-C well and avoids fevers/infections.
Love,
Amy, Kevin, Katarina & Christian
Friday, August 6, 2004 12:53 PM CDT
News flash! Katie's counts were not at a high enough level to start the Ara-C phase today, Friday, August 6. She's off all meds for one week to let her counts rise and the Ara-C (and long clinic visit) is now rescheduled for Friday, August 13. Argh. Friday the 13th?
This one-week delay is not uncommon and her doctors were not concerned.
The upside is that we have another week of summer to enjoy so we're headed outdoors! Have a great weekend!
Thursday, August 5, 2004 11:06 PM CDT
Thanks for checking in on Katie. Week #4 of Delayed Intensification down, three more weeks to go.
This week was so much better than the steroid-tainted week before!
Sunday we did celebrate Katie’s second birthday quietly at home. I baked her a rhino cake. Her favorite animal is a rhino…go figure! (I posted a photo of the cake in the photo album tonight.) She opened up all her gifts and cards. Thank you to everyone for thinking of her on her birthday! She is enjoying EVERYTHING. It sort of feels like Christmas around here with so many new toys!
Monday, August 2 was Katie’s actual second birthday and it was a whirlwind day. First, her friend John came over for a short play date. They had a fun time together playing with her new toys. For lunch, her friend Ellie took her out. She had a great time eating a special ice cream cookie topped with whipped cream, a cherry and a candle! And, for a special treat, her Oma Carole took her out for ice cream in the afternoon. Katie had the energy to keep up with this pace and she enjoyed it all!
Tuesday was errands with me and Christian. Wednesday was a big day as we hosted the German playgroup at our house. We had seven of her friends over to play. We had to stay inside as it had poured rain the night before and it was too wet to be outside. Katie had a good time though she was overwhelmed at times with everyone playing with “her” stuff! : ) Later in the day we visited my former workplace to stop by and say hello. Katie entertained everyone with her antics and Christian charmed everyone with his smile.
Today was another busy day. We had German class and then tried to go to the local farm zoo. The parking lot was filled and I wasn’t willing to search out parking further away so we just came home. Tonight we went out for ice cream and Katie almost finished her whole cup!
Tomorrow, Friday, August 6 will be a long day if her counts come back indicating she can start the next phase in Delayed Intensification. She will get Ara-C, or cytabarine, on 8/6, 7, 8, 9 and then again on 8/13, 14, 15, 16. (She is tentatively scheduled to start this phase on 8/6 if her bloodwork indicates she is at the level needed.) One side effect of this drug she’s getting is that it lowers the blood counts purposely. As a result, she is going to be very susceptible to infections. The biggest indicator of an infection will be a fever. If the fever reaches 101 we need to take her to the hospital (University of Chicago) and they will likely admit her to administer preventative antibiotics and watch that nothing gets out of control since her body won’t be able to fight off infections very effectively. Please pray that she can avoid these infections and fevers and stay out of the hospital.
And, believe it or not, if she handles this next phase well, she is not scheduled for another clinic visit until Friday, September 3. The clinic said that realistically, it’s 50-50 whether we’ll see them in the interim or not. Please pray that she can wait to see them until September 3!
Also, I have to remind everyone to donate blood. I did it tonight for the second time ever. And, those who know me know that this is a difficult thing for me to do since I’m so, um, queasy about needles, blood, etc. It wasn’t bad at all and I just make sure to tell the nurse that I am a bit uncomfortable with the whole process and they took great care of me! So, please, please, please take time to donate blood. And, those of you in Chicago, if you donate with LifeSource before August 28, you can enter a random drawing to win Skybox tickets to a Cubs game. So…what are you waiting for? Take an hour out of your day and help save a life!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Sunday, August 1, 2004 9:54 AM CDT
Thanks for checking in on Katie. Week #3 of Delayed Intensification down, four more loooong weeks to go.
This week has been a trying one for the most part. And, who do we have to thank for that? Steroids. The good news is that she got the last nearly double dose on Thursday night and by Saturday was acting more like herself.
Monday was a rough day with Katie. The insane hunger started in and all she wanted to eat was pasta, pickles, and stew. Not only for dinner, but for snacks, lunch, and breakfast too. I put my foot down and declared no pickles for breakfast. The thought made MY stomach turn! Being in the house is the worst with her, so we took a drive “to nowhere and back” By nowhere I mean we had no destination. Let’s just say we explored the northwest suburbs and I found a subdivision bordered by a cattle farm. Never thought I would find that around here!
Tuesday was a better day...but the hunger was still in force. Wednesday we went to the German playgroup and Katie sat and ate (pasta and cheerios) the entire time we were there and refused to play with any of the other kids. I decided to call it quits after just 50 minutes when she kept whining “Bitte im Auto,” or “Let’s go.”
Thursday we didn’t even try going to her German class as I knew she couldn’t last an hour in a structured environment. Instead, we went to her friend’s house for lunch and then we went out to this farm park in Geneva. Katie refused to get out of the stroller, so we just explored as much as we could. And, as we were about to leave, she did decide she’d go into the house where they have a kids’ activity room and some wildlife. She did play nicely in there for a few minutes and then declared once again “Bitte im Auto.” So we left our friends there to continue playing.
Friday we didn’t have a clinic visit. Yeah! So, to keep Katie from whining and driving me and Christian insane, we went to the zoo for the day. She had a great time though she wouldn’t walk around much. I did get her to get out of the stroller in the gift shop. I was so happy that I told her I’d buy her something. So, guess what our little girl decided she wanted? A three foot long rubber Coral Snake! Yup! She was so happy she even walked out of the zoo shop carrying her snake and saying “SSSSSSiiiiiissssssss.” It was cute! The snake is now Katie’s constant companion.
Saturday Katie was feeling good in the morning and seemed to be more like herself so we decided to do an impromptu day trip to visit Grandma. Katie handled the 2 ½ hour car ride without problem as she had her snake with her. Christian just slept the entire ride which was amazing, but very nice!
While visiting Grandma, she – as always – reorganized Grandma’s Beanie Babies. She also had fun going to a local farm zoo. She got to see “piggies” rolling in the mud which she thought was “yucky.” : ) Christian seemed to enjoy seeing all the animals there too.
We also stopped by a couple of friends’ houses to say hello. Katie had fun dancing at one friend’s house and playing the piano at another. Did I mention she loves music and we had to listen to a Bear in the Big Blue House CD in the car most of the trip down and back? “Welcome, welcome, welcome to the Big Blue House. Welcome, welcome, welcome to the Big Blue House...” is playing in our heads continuously now!
And, the event we’ve been waiting for and dreading arrived pretty much on time. Katie lost all her hair overnight on Friday night. Fortunately, she doesn’t mind wearing hats so she won’t get sunburned on her head.
Katie’s 2nd birthday is on Monday, August 2 but since Daddy will be at work that day, we’re going to celebrate her birthday today, Sunday, August 1. She’ll be opening all her cards and presents today and eating some of the birthday cake I’m making this morning. Photos to come...
Katie’s next clinic visit is Friday, August 6. It’s scheduled to be a long visit (6-7 hours is what they’ve said, but in real time that could easily turn into a 12 hour day) if her counts are good enough to start the next phase. Since she’s been pretty active and has rosy cheeks we assume her counts will be good enough to start the next phase so she can finish DI and have it behind her.
Also, a special thank you to everyone who has contributed to Katie's Light the Night fundraising and to Mark's Team in Training fundraising, both of which benefit The Leukemia & Lymphoma Society.
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Friday, July 23, 2004 10:35 PM CDT
Thanks for checking in on Katie. Week #2 of Delayed Intensification down, five more to go...provided there are no delays. (Delays can happen if her blood counts are not at the required level.)
Once again, Katie’s clinic visit today went well. Her blood counts have dropped dramatically as is expected and wanted during this phase of treatment. She got the same two drugs as the previous two weeks and the anti-nausea medication. She did great and impressed the nurses and doctors by building a Lego tower and then sharing her toys with them!
She slept on the way home from the clinic, however she was ready to get down to some hard playing as soon as we got home. This evening we went for a walk to the playground and she climbed up the big slide at least 10 times, the little slide about the same, and wanted to be pushed on the swing as well. She then walked about two blocks during our walk before asking to go back in the stroller. So, obviously, she’s feeling pretty good.
Today started the 7-day pulse of nearly double-dose of steroids. Two doses down, twelve to go.... Pray for her to get through it without too much moodiness and ravenous hunger.
And, she’s been doing well as evidenced by her busy schedule this past week: Monday was a visit to the zoo to play with her friend, Tuesday was errands with mom, Wednesday was her German playgroup where she kept up with all the kids, Thursday was her German class and then a get together with friends at a nature center where we took a long hike that she walked most of the way! We’re happy she can keep this active so we’re going to keep it up until she tells us otherwise!
Christian is busy growing. He again stayed home on Friday with Daddy. And, he was very cooperative and took nice long naps so Daddy could work!
Katie is on a break from clinic visits until Friday, August 6. Pray that she has no reason to have an unexpected clinic visit or hospital stay during this time!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Monday, July 19, 2004 2:53 PM CDT
Thanks for checking in on Katie. Week #1 of Delayed Intensification down, six more to go....
Katie’s clinic visit on Friday went well. Things took a lot longer than we expected, but it always seems to when you least expect it. Katie got the same two drugs and an anti-nausea medication and did well with it all.
Once again, she did well over the weekend. She wanted to play as usual and her appetite was pretty ravenous. (We think that the steroids were still in effect even though the last dose was on Friday morning.)
The week of steroids went relatively well. We had to leave a play group on Monday early and abort going to her Thursday class due to her little unexpected bouts of “craziness” due to the steroids. But, all in all, the week went well. She starts up another week of the nearly double dose of steroids again on Friday. Please pray for her -- and us -- to get through it.
Christian’s doing fine. He stayed home with Daddy on Friday and was a great baby for him. Christian is simply busy getting bigger, as if he’s not big enough already. He’s ready to outgrow the infant car seat due to both his height and weight…and he’s not yet four months old!
Katie’s next clinic visit is Friday, July 23 where she’ll get the last of the one drug that can have heart side effects. We’re hopeful that she’ll never have to deal with that drug again and that the total dosage was low enough to not have side effects later down the road.
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Monday, July 12, 2004 9:42 PM CDT
Thanks for checking in on Katie. And, as I’ve told many people recently, everyone’s thoughts and prayers are working for Katie as she’s still doing very well.
First, leftover news from Friday’s clinic visit, Katie’s spinal tap came back all clear. She had another clinic visit today for two shots of another drug. She did well and we were in and out of the clinic very quickly which was nice!
She did remarkably well over the weekend despite the big dose of steroids she’s on. She’s currently on dose 7 of 14 and she’s still quite agreeable to most things and not ravenously hungry…yet. She is more tired though and is taking about two naps a day now, but still has the energy to get outside and throw her ball, water plants with her watering can, draw with her chalk, ride her trike, and blow bubbles. She still tires us out! So, the first few days of the delayed intensification phase are going much better than we expected.
Grandma came to visit this weekend and stayed with Katie and Christian on Sunday so we could attend a friend’s wedding. She did well with Grandma and managed to tire Grandma out too! Christian also got some one-on-one time with Grandma on Monday morning when she babysat him while Katie and I went to the clinic.
Katie’s next clinic visit is Friday, July 16. Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Friday, July 9, 2004 10:14 PM CDT
Thanks for checking in on Katie. She continues to do well.
Today started the first day of her delayed intensification (DI) treatment. At her clinic visit she had her blood counts done (they were good enough so she could start DI), a spinal tap (final results will be available on Monday), one chemo drug she had before, an echocardiogram (to get baseline heart function as one of the chemo drugs can cause heart issues later), and another chemo drug she had not had before. The DI phase will last seven weeks provided her counts are good throughout and nothing needs to be delayed.
She did well at clinic and even offered her well-loved “green bear” to her doctor. We were surprised! I guess she’s feeling more comfortable there!
On the way home from clinic, she slept the entire ride home. (By the way, we made the trip to clinic in less than one hour in the morning but it took us 95 minutes to get home in the afternoon!) We figured she’d be zonked when we got home from the long clinic visit, but she was a crazy girl and was running and talking nonstop. We even went for a walk this evening and she walked for quite a while on her own!
She’s now on steroids again (yuck!) for seven days. Her dose is nearly twice what it has been in the past and so we’re not sure what to expect from her in terms of her attitude and appetite. Please keep her in your prayers that she handles them well -- and we can handle her well!!
She returns to clinic on Monday for some shots – an administration of another chemo drug.
And, earlier in the week, Katie had a fun 4th of July. She had wanted to see fireworks and so we did. Once they started however, the constant noise scared her. We had to retreat to the car, but fortunately where we parked we could still see the fireworks so she admired them with the car windows shut tight. If you ask her about the fireworks, she is likely to respond, “Fireworks loud!”
We also had a family photo taken on Tuesday night. Katie and Christian were in a great mood and agreed to pose with mom and dad and with each other for some great photos. We’ll post them as soon as they’re available as they turned out so well.
We also made it to the zoo on Thursday. We had tried to go on Monday, the 5th, along with about 5 million other people. The parking lots were filled and the zoo was turning people away on Monday. On Thursday she had a great time and walked a LOT around the entire park!
Christian is doing great. He’s “talking” and laughing a lot now. He loves watching Katie and she shares a lot of her toys with him. He went to clinic with us today and entertained all the nurses and doctors with his big happy grin!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Saturday, July 3, 2004 10:33 PM CDT
Thanks for checking in on Katie. And, we’re happy to report that no news is good news once again.
Katie just started a week off of all meds except for one antibiotic. We are enjoying waiving the “no food after dinner” restriction for her and taking her out for ice cream after dinner this week!
If her blood counts are good, she’ll start delayed intensification (DI) on Friday, July 9 which means weekly clinic visits once again. DI we’re expecting to be rough on her, but still hoping for the best. Please keep her in your thoughts and prayers. She’ll be starting 7-day runs on steroids with the dosage almost doubled from what she has had previously. DI is scheduled to last for seven weeks.
On a good note, she had a great time with Grandma on Thursday when Kevin and I went to his company get together. At least we can happily report that the Cubs won over Houston!
Today was our neighborhood Fourth of July parade where Katie once again loaded up on lots of candy! : ) She’s getting to like these parades except for the loud fire truck and police sirens.
Tomorrow night we’re off to see fireworks with Katie. She is really looking forward to this as she keeps hearing fireworks in the neighborhood and asking about them. We hope she is dazzled by the display and not frightened by the nosie!
Christian laughed for the first time this week. He’s a real social guy! He’s also continuing to grow like a weed. He’s officially doubled his birth weight already at 3 months old. He’s over 18 pounds now!
We updated the kids’ websites today. Visit our site for the newest photos. Enjoy!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Monday, June 28, 2004 10:03 PM CDT
Thanks for checking in on Katie. All continues to go smoothly and Katie’s currently just having a good time playing and, did I mention, TALKING ALL THE TIME?
We had a fun visit to see Grandma this weekend. She reorganized Grandma’s bear collection while visiting. : ) We also went to an early 4th of July parade with Aunt Virginia and Uncle Earl and several cousins. Katie had a great time collecting candy with the help of her cousins. She also got to see her Aunt Donna.
Christian had a good time impressing everyone with his great big smile. He traveled in the car like a dream by sleeping the entire way home and back.
We didn’t make it to the horse show on Sunday as the horse we wanted to see wasn’t going to be there. Next time!
Grandma’s visiting us this week to babysit on Thursday so Kevin and I can go to a company get together – at Wrigley Field for a Cubs game. Katie and Christian will have a great time with Grandma!
And, we are starting a fund raising effort for the Leukemia and Lymphoma Society with their Light the Night walk on September 23, 2004. Please consider donating to the LLS and help us reach our $1,000 goal. You can make a secure online donation on Katie’s fundraising site. Also, you can walk with us on that night too; let us know if you’d like to join our team, Katie’s Cheerleaders.
Also, our friend Mark is participating in the Accenture Chicago Triathalon on August 29, 2004 and raising funds for the Leukemia and Lymphoma Society. Mark’s heroes for the triathalon are his grandmother who succumbed to leukemia in 1980, a Naperville mom who had Acute Myelogenous Leukemia and a bone marrow transplant in 2000, and Katie. If you can help him reach his goal to raise $1,800, please visit Mark's Team in Training page to make a secure online donation.
Katie's next clinic visit is still scheduled for Friday, July 9 so we are going to endeavor to have a great celebration during the 4th of July weekend.
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Tuesday, June 22, 2004 9:38 PM CDT
Thanks for checking in on Katie. Again, no news is good news. She did well with the steroids last week and after the last dose on Wednesday morning, she was back to her normal self in no time.
She’s been feeling good and just playing a lot. The whole language thing is exploding at a record pace. She surprises us daily with a new word or a new string of words we’ve never heard her say before. Her latest was “I put straw in the water.” She is also suddenly enamored with a German song book we have and we are singing “Bruder Jakob” (Brother Jacob) ALL the time!
Christian continues to grow like a weed. He’s over 17 pounds now and really paying attention to a lot more. He loves to watch Katie play and she happily shares her toys with him!
Katie had a fun time with her cousin, Michael, this weekend. She enjoyed watching him at the skate park and doing his stunts on our driveway. At home, Michael was playing a lot of pool and her Uncle Steve taught her to say “Michael scratched” at the appropriate time. That was her favorite phrase, to Michael’s chagrin!
This coming Saturday we’ll all be heading to Grandma’s for the day. We also hope to meet up with several other relatives who we haven’t seen for what seems like a long time! Sunday we’re hoping to go to a horse show to see a friend’s horse. Katie will enjoy that!
Katie's next clinic visit is still scheduled for Friday, July 9 when she will start the delayed intensification phase. Until then, we’re just enjoying doing as much as we can!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Monday, June 14, 2004 10:22 PM CDT
Thanks for checking in on Katie. She had her clinic visit on Friday, June 11. Her blood counts are good and the spinal tap check came back all clear. (We had to wait until Monday to get the final results.) She also had one drug administered at the clinic and seemed to do fine with it.
She also started her five-day steroid run on Friday. She’s been handling it pretty well except for the unexpected outbursts of incessant crying. She seems to rebel the most with routine stuff while on steroids. Pray that she continues to handle the steroids well as she’s on them until Wednesday morning.
And…Katie’s been having lots of visitors! Her Aunt Kathy and Uncle Vic stopped by on Sunday on their way to northern Wisconsin for vacation. Later this week, her Uncle Steve, Aunt Ruth and Cousin Michael will be staying with us. She’ll have lots of fun watching Michael do his skateboarding stunts. And, we hope she doesn’t get any ideas from him!
Katie's next clinic visit is on Friday, July 9. If her blood counts are good, that day she will start a seven week long intensive phase of treatment called, aptly, delayed intensification.
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Thursday, June 3, 2004 9:11 PM CDT
Here it is one week later and we still would like to happily report “no news is good news” about Katie. She’s been doing very well. Playing, eating, sleeping, and BABBLING like any other almost-two-year old! Her biggest accomplishment in the past week is learning how to blow bubbles on her own! She could do this for hours now!
She’s continuing to be a great helper with Christian and with other tasks she sees her mommy and daddy do around the house. She will pick up Christian’s pacifier if it falls on the floor and place it on the kitchen counter to be washed. She has also taken it upon herself to start keeping the cats’ food dishes full. She will drag out the cat food container and then ask one of us to open it and then she will fill (though a bit heaping) each dish. She then closes the container and returns it to the cabinet. Chloe and Cleo thank her immensely! Now if only she could reach into the treat drawer, they would be super happy cats!
And, I must proudly announce that I GAVE BLOOD TODAY! For those of you who know me well, I’m super duper squeamish about blood stuff. (Don’t ask me how I deal with Katie’s stuff; I just do.) I almost fainted at a Civil War reenactment camp out in Maryland several years ago. We had gone to take a tour and we went to the hospital tent where they were merely describing how they were attending to wounds. No photos, no demos, just words coming out of a guy’s mouth! I had to go sit down in the grass out of earshot…
So, the bottom line is that if I can give blood, almost ANYONE can – and should! Though Katie only needed one platelet transfusion before she had her port placed, there are lots of leukemia patients and other people who need blood. I urge you to try. I am scheduled to try to give again in early August. Kevin donated last week and hopes to return and make this a habit as well.
Katie's next clinic visit is on Friday, June 11. She'll start another five-day steroid run at that time too. UGH!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Thursday, May 27, 2004 8:35 AM CDT
No news is good news! Katie's been her normal, active, VERY verbal self since the steroids ended last week. She's having a great time spending time outside and playing with all her toys. We're hoping things continue this smoothly for her.
Katie is looking forward to this weekend when she'll get to spend some time with Grandma. Grandma is coming to visit so Kevin and I can go out to dinner to celebrate our 10th wedding anniversary!
Christian is doing great. He's getting bigger everyday. We updated his and Katie's sites with new photos this week. Enjoy!
Thanks for your continued thoughts and prayers!
Love,
Amy, Kevin, Katarina & Christian
Wednesday, May 19, 2004 11:45 PM CDT
The five day stretch on steroids is over! Yay! Tuesday night was her last dose (for another three weeks) and already tonight she was more cooperative with the usual bedtime routine. And, the ravenous hunger never showed up. We were amazed (but happy) and think maybe another med caused the hunger component to be lessened this time. She did have a harder time getting settled to go to bed this time on steroids, but we’re not sure if it was the steroids, it being lighter later out (when she goes to bed), or teething issues. Also, she was waking up early (6:15 am was LATE for her!) which we’re not sure what to attribute to either.
Katie’s doing well over all. She is still very interested in being a helpful big sister to Christian. She asks to hold his bottle now when we feed him. : ) It’s so cute to see her so involved with him! He watches her intently whenever she’s within his view!
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Friday, May 14, 2004 10:46 PM CDT
Today’s clinic visit went well. This was the first time I took both kids there by myself. Christian was a good little guy, ate while we waited to get seen, and was a charmer for the adoring fans at the clinic! Katie just had blood work done (all the counts are fine right now) and one chemo drug administered. The clinic visit took only took about 30 minutes. Getting there in the rain was another story…it took us about 2 hours to drive there when I usually do it in just a little over one hour!
Katie started a 5-day long run on steroids starting today. The good news is that it’s only for 5 days. The bad news is that we are already seeing the effects of the steroids on her. She’s moody, cranky, and whiny. I’m sure the ravenous hunger effect will kick in shortly. She is just not usually happy herself at all on steroids and it’s difficult for us to see and deal with. Please pray for us all to get through the next 5 days!
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Wednesday, May 12, 2004 8:58 PM CDT
We were studying Katie's new schedule for the treatment plan she is on and noticed that we didn't have clinic visits for *every* Friday for the rest of May and June. The suspense was too much, so we called the clinic to confirm. Katie only has a clinic visit on 5/14 and then 6/11 and that's it for May and June. We were very surprised and happy to have our Fridays back. We're also a little nervous to not have the clinic visit to learn her blood counts weekly, but we're hopeful she'll do fine in between visits. She'll be on a variety of meds at home and hopefully will continue to do well.
We are pretty happy to not make all Fridays clinic visits, especially now that summer is upon us and we'd all rather be outside doing something FUN! : )
Speaking of summer, it was HOT here today and so Katie and Christian and I took an impromptu visit to Brookfield Zoo. Katie really enjoyed it and Christian was in awe during his first visit to the zoo!
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Sunday, May 9, 2004 9:28 PM CDT
Happy Mother’s Day! Thank you for visiting Katie’s site. We’re all doing well!
Katie had another clinic visit on Friday, May 7 and had blood work and a spinal tap done. The spinal tap results came back clear as they have all along. We were glad to hear that news again. Her blood counts are pretty good as well and, as a result, she’s playing a lot and doing normal stuff – showing us that she’s nearing age two with some temper tantrums here and there!
The big news from this last clinic visit was that she was assigned the rest of her treatment regimen for the next two years. She is part of a clinical trial, the CCG-1991 protocol and was randomized to arm 1, or the standard treatment regimen. We only know her treatment schedule until the end of June for right now, but at least we know what chemotherapy/medications she’ll be getting throughout the course of treatment (for the next two years) and when they will roughly be occurring.
Grandma came to visit for the day today. Katie had a great time playing with her! She also surprised Grandma by telling her “I love you!” It was very sweet!
Christian is continuing to grow fast and furious…he’s just about 13 pounds already. He’s smiling now and tracks Katie as she buzzes about the room. Katie adores him and is always eager to help Mommy or Daddy with him. She’s still not keen on having him sit next to her or on her lap, but she does like to play with him when he’s sitting in his bouncy chair!
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Tuesday, May 4, 2004
Thanks for visiting Katie's site. Please visit the journal history to see previous updates, photo album for photos, and guestbook to leave a message. We hope to update this site weekly to keep everyone up-to-date on Katie and her treatment.
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
Friday, April 30, 2004
Katie's clinic visit was pretty routine this week. She only had bloodwork done and a spinal tap. Her spinal fluid is still clear which is good news.
Last week, her doctor said that on a scale of 1 to 10 in terms of how she is responding and reacting to everything, she is a 10. We were happy to hear that!
This upcoming Friday, May 7, 2004 we'll find out which segment of the treatment (CCG-1991) she'll be on as there are four different possibilities. After that is determined, we'll know more about what is coming up in the next few months.
Katie is doing very well. She is feeling more like herself, playing more, has more energy, and is happier now that she is off a steroid medication she was on for 28 days at the beginning of her treatment. We are all grateful that she is not so moody and cranky (and ravenously hungry) right now! She continues to go to her weekly clinic visits at the U of C. Every week is different in terms of what is on the schedule for her to have done, but every week she gets blood drawn to see where her blood counts are. They have continued to improve which means she’s not in danger of needing a blood transfusion. Good counts also mean she has more energy to play!! We've noticed that the house is suddenly more cluttered with toys once again. We don't mind that at all!
Christian’s doing fine. He’s going to be a big baby though. He eats and eats -- ALL THE TIME! He’s only a month old now and is over 12 pounds…and he eats religiously every three hours.
Katie really is into being a big sister. She is VERY concerned about Christian when he cries and narrates whatever we are doing (diapering, feeding, etc.) to him! She also shares her toys with him which we think is so sweet!
We hope to update this website on a weekly basis. Don't hold us to that schedule though--we'll do our best. Please feel free to sign the guest book or send us e-mail. We all love hearing from everyone though we aren't the most prompt about returning calls and e-mails nowadays.
Thanks for your continued thoughts and prayers.
Love,
Amy, Kevin, Katarina & Christian
April 4, 2004
It's a BOY!!!!
Christian Thomas Hausman arrived on Thursday, April 1, 2004 at 11:12 pm. He weighed 9 lbs., 6 oz. (!) and was 20 ½ inches long.
Christian, Mom, Dad, and Big Sister Katarina are all doing well.
We came home on Saturday, April 3, 2004.
March 29, 2004
First, still no new baby. He or she is officially “overdue” now! : ) We’ll keep you posted on the new baby news. I had a dr’s appt today (3/29) and the next one is scheduled for Thursday, 4/1.
Katie had her first clinic visit on Friday, 3/26. She had a dose of chemo, a spinal tap and a bone marrow test. The good news is that the bone marrow test indicated that there are only 1.2% blasts (core white cells that produce your white cells). Since the percentage is less than 5%, this indicates that Katie is already in remission. The doctors had predicted that she would go into remission within 7 to 14 days after treatment began, so she is right on schedule. Her blood counts were good on Friday so they also did not feel the need to do a blood transfusion which was good news as well. And, because her bone marrow test results showed her in remission, she won’t have to have another bone marrow test this Friday at clinic.
Friday’s visit was stressful for her and she’s still recuperating from the procedures and the effects of the chemo. She’s doing well though and not had any major adverse reactions. We tried to have a nice weekend and were able to get outside on Saturday for a stroll and today to enjoy the nice weather.
Thanks again for your continued thoughts and prayers which are continuing to work for all of us. We are glad to hear from all of you and are still working to return calls and e-mails.
Love,
Amy, Kevin & Katarina
March 23, 2004
We are home!!!
Katie had one administration of a medication on Monday morning at the hospital where they wanted to observe her for possible allergic reactions. Fortunately, she had none. We were then able to leave the hospital late on Monday (3/22) afternoon and got home in time for dinner. Katie was very, very, very happy to see her kitties (Oh-wo and Ee-oh), see all her toys, her own bedroom and all her own stuff once again. We had a very quiet evening at home with her. Today (3/23) has also been a quiet day letting Katie get readjusted to the routine at home. She is eating better and sleeping better here at home than she did at the hospital which is good for all of us!
The routine here at home is that she receives a variety of medications twice a day. Kevin and I are working to get this routine down as we figure out the best methods to measure, mix and administer everything. Katie has been very good about taking all her medicines and continues to not have any other adverse reactions to them. She is much more tired than usual, but has bursts of energy and is starting to verbally narrate EVERYTHING for us. What we are eating, where the cats are, what is going on outside, what toys she has, what a cartoon is all about. It’s very cute!
This week we expect to be pretty low-key—except if the new baby decides to arrive. Katie has her first outpatient visit at the University of Chicago clinic on Friday. This visit will involve another round of chemotherapy, a bone marrow test, and a spinal tap. The latter two are to check for the presence of cancer cells as, believe it or not, the cancer itself will mostly be killed off within 7 to 14 days of the first day of treatment although the entire treatment regimen will continue for two entire years. Katie may need a blood transfusion on Friday as well, depending upon what her blood counts look like. But, all in all, we expect Friday to be relatively routine and we will return to the clinic weekly for her outpatient visits. (And, yes, I do have a driving buddy for Friday’s long drive. Katie’s Oma Carole will accompany us to the U of C on Friday so that in the case of Baby H2 arriving, someone else can take over the driving and get me to a hospital to deliver the baby!)
Many of you have asked or are probably wondering if Katie had been sick (i.e., tired, pale, lethargic) or that we suspected that Katie had leukemia. The answer is no. We simply had the good luck of noticing a few early things that we took her to her pediatrician for which we thought were something else. Fortunately, Katie’s pediatrician was observant enough to press for a quick blood test. Katie had a sore foot develop on the afternoon of 3/13. It seemed to get better as the weekend wore on, but then on Monday Kevin noticed little red freckles on her legs. Being pregnant and paranoid, I was afraid that the red dots were measles or some contagious disease. Turns out that the red freckles could be a sign of a low platelet count and the doctor wanted to rule out anything major by ordering the blood test.
After one simple blood test, we were given the diagnosis of leukemia and ordered to get Katie to the hospital asap. Our pediatrician recommended the University of Chicago and one doctor in particular. We’re grateful for his sound referral. And, it turns out that the sore foot was probably related to the onset of leukemia where the bone marrow is replaced by cancerous cells and was causing pressure and pain in her bones. And, the type of leukemia Katie has comes on very quickly. The doctor has said that if we had a blood test even a week earlier, it may have come back perfectly normal. So, we’re grateful for our paranoia and Katie’s pediatrician’s recommendations.
We’re hoping to get to talk to all of you personally as time and energy permit. Thanks again for your continued thoughts and prayers. They are working wonderfully all of us!
Love,
Amy, Kevin & Katarina
March 20, 2004
Please excuse the mass e-mail once again, but this is the most efficient way to give everyone an update while we are spending so much time at the hospital. (I have been there every night since Wednesday and Kevin has only been home one night.) Today, Sat 3/20, is the first day I’ve been outside. At least I got a gorgeous day to soak up the sun and spring-like (50’s) temperatures here.
Thank you all for your thoughts, prayers, phone calls, messages, offers for help, cards, packages, goodies, and kind words. We all appreciate it and it’s helping Katie and us immensely to get through this difficult time. We know that the prayers are working as there are so many things that are going well for Katie right now.
The best news is that Katie is doing great. She was diagnosed with ALL – Acute Lymphocytic Leukemia – which is one of the most prevalent forms of leukemia in young children. The good news with that is that there is a set method to treat the disease and a very high cure rate. And, it appears that the disease was identified early enough that she does not have any organ damage from the disease.
Wednesday she had undergone a zillion tests to confirm what she has and to determine what the next course of action is. On Wednesday it was mainly testing and then admittance to the hospital. She underwent more tests and got settled in on Thursday when we had many meetings with her doctor (who is wonderful!) and various nurses (who are all wonderful too!). On Friday she had surgery to have a port put in on her chest so that they do not have to continue finding veins on her arms. She also had a spinal tap to check her spinal fluid which we just found out that it’s totally clear of cancerous cells.
Friday night she received her first dosage of chemotherapy and we are now in the process of seeing how she is reacting to the various medications and hoping there are no adverse reactions. She will continue with chemotherapy twice daily while in the hospital. If she does well with all the prescribed medications, we may be able to come home as early as Monday, 3/22.
The treatment plan after she is released from the hospital involves no further hospitalization unless there are adverse reactions. We will make weekly treks to the U of C for outpatient administration of various medications, but all other medications can be given at home. So, we are relieved to hear that we won’t be spending that much time at the hospital after this initial hospitalization.
And…on the new baby news front all is going well. The baby is due 3/28, but right now doesn’t seem ready to arrive any earlier. The good thing is that I’m at a hospital so if I have to have the baby while away from home, they’re prepared for it! : )
Thank you all for your concern. We will keep you posted as to Katie’s progress and talk to you all via e-mail or phone personally as time permits. Please continue to keep Katie in your thoughts and prayers!
Love,
Amy, Kevin and Katarina
March 16, 2004
Our 19-month old daughter, Katarina, was diagnosed with leukemia, today, March 16. She is being admitted to the University of Chicago Hospital on March 17 to undergo further testing and then treatment. She is in need of all of your thoughts and prayers at this time.
We will keep you posted as to her condition as best we can.
Thanks in advance for your thoughts and prayers.
Amy, Kevin & Katarina
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