The Beardsleys

Happy New Year

2011-01-03T01:49:00.003-06:00

We wish everyone a Happy New Year! May all your wishes and New Year Resolutions come true!

We wish for health and happiness for our children! We pray that Josie will continue to do so well after having completed her therapy last year. We hope that Sammy will continue to do well at school and that he will find a "best friend" who's good to and for him.

November

2010-11-14T10:26:00.002-06:00

Josie's final test results were all great! The bone marrow was clean, her MRI didn't show any issues with her brain, her kidney function test was fine and so on. We don't have to go back to Clinic until early December. That is soooo weird! We are so used to the weekly Clinic visits by now. But we are so happy that it's finally over and so far, we've really kept our emotions in check (as far as being overly scared or worried is concerned). I just detected a nasty bruise on her shin and I am proud to say that I did not panic! The doctor at the Clinic told me that if Josie were to relapse, we would know it. There is NO missing that. She'd get sick fast. But Josie WILL NOT and MUST NEVER relapse, so that's that! :-)

I have been super busy with school. I come home late on Mondays and Tuesdays but it is definately worth it! In the end, it'll be all worth it!!! I have great teachers, some of them are Americans and I get along great with them. We chit chat a lot before and after classes. It's kind of funny that my teachers are not much older than me! But then again, this is my second university degree, so it makes sense. I like it this way, I look at things differently now and I can talk to the teachers better.

Sammy can't wait for Christmas vacation. He is busy writing his wish list (which must be many feet long by now). He's learning fast at school and his reading and writing gets better on a daily basis. I hope that he will soon make one really good friend who he can rely on and who likes Sammy for who he is. He does have friends but not a "special friend" if you know what I mean. He had Jack, when we were in the States and Sammy still misses him and talks about him. They're pen pals now which is wonderful!

Josie likes her new Kindergarten a lot! She's become quite sassy recently, which might be because of this change in Kindergartens. Also, she's one of 25 kids now (instead of 10), so she's learning to "use her elbows" to get what she wants. For some weird reason her rash has been getting worse once Chemo stopped, so that's something we're "working on". So far, we're trying a homeopathic cream since we want to avoid steroids. She had plenty of that in her young life and we wanted to give her little body a break. But she's scratching and if it doesn't get better, we'll need to apply some steroids after all to prevent scarring. Dr. Lothschuetz also said that we might need to consult a dermatologist but we'll try it our way first.

Thank you all for your comments to my last posting! It makes me happy to read how many of you are still thinking about us. :-)

It is OVER!!!!!!!!

2010-10-28T10:01:00.004-05:00

Prepping for the EEG

Josie right after the bone marrow biopsy

Hurray! It's OVER!!! :-)

Today is Josie's end of treatment day! It is finally OVER! 2 years and 4 months of chemotherapy and other treatments for leukemia are over and done with.

To be honest, this day is very odd for us in a way. Tim and I don't know whether we should laugh or cry. It probably sounds weird to people who haven't gone through what we went through, but by giving her chemo every night we KNEW that we were doing something against the cancer. Now we feel like it's a "let's wait and see" game...But of course we are very happy that she doesn't need to take any chemotherapy anymore! If you think about it...Josie's been sick longer than she's been healthy in her short little life. We'll finally have our healthy lil' girl back!

We've had a long day at Clinic today. First Josie had to get an EEG, then she was scheduled for her final bone marrow biopsy. Today for the first time in her treatment, the doctors weren't able to access her port. Poor Josie got poked like 6 or 7 times but nothing went in and nothing came out. So they had to put an IV into her arm to put her under for the biopsy. She wasn't happy about that at all as you can imagine...But while Josie was under, the doctor was able to flush out whatever clogged the port up. After the marrow we had to wait til she woke up and wasn't dizzy anymore, then we went to the nuclear medicine lab for a kidney function test. All these tests are routinely being done for all kids to make sure nothing got harmed by the chemo. We don't have results yet. Next week are the final tests, she has to go to the eye and ear/nose/throat doctor and she's scheduled for a brain MRI on Thursday. Then we'll only have to go to Clinic every 4 weeks for blood counts. They explained to us that there are 2 reasons for the Clinic visits these next 5 years: nr. 1 is that they want to make sure that she doesn't relapse, that the cancer doesn't come back. Nr. 2 is that they need to keep a close eye on her to see whether there are any long term effects from the long chemotherapy treatment.

So...it is over and we are a little shocked that this day actually came! I hope you will all cheer with us to celebreate the end of 2 long years and 4 months of cancer treatment. Many of you have read this blog from the day Josie was diagnosed on or joined us somewhere along the road. Thank you for being there for us and for all the many encouragine words we've received. Today is a day of celebration!

"Make-A-Wish" Part 3

2010-09-28T12:11:00.002-05:00

Josie and friends in the little house under the tower

She had sooo much fun that day!!!

The cake that "Make-A-Wish" had ordered...cheesecake...yummy!

The playstructure from the backside..you can also see parts of our house in the background

I love this close-up that my friend Bianka took of Josie on her big day! :-)

We had a wonderful time! Josie (and all of us) will never forget her "Wish Day"!!!

"Make-A-Wish" Part 2

2010-09-28T12:06:00.003-05:00

Kevin from "Make-A-Wish" finally gave her the green light to go outside and look...

Yiiiippppppieeeee.....

Cutting the Ribbon...

And down she went on her brandnew, bright red slide for the very first time! :-)

Josie's "Make-A-Wish" Day, Part 1

2010-09-28T11:53:00.002-05:00

Josie's "Wunschtag" (wish day) had finally arrived...when Kevin and Melanie from "Make-A-Wish Germany" visited us in April, Josie told them that she wished for a playground for her backyard...

Everyone looked a little skeptical when the contractors piled up wood and a few bags of concrete...didn't look much like a play structure yet

Putting the little tower up took the longest...all the guys you see on the picture actually donated their time and tools to put this play ground in for Josie

The kids' table waiting for the little guests

Josie was soooo excited to finally see her surprise

Josie, the Prima Ballerina

2010-09-24T09:50:00.002-05:00

It has been Josie's wish for the past couple of years to take Ballet lessons. Here wish came true last week, when I finally found Ballet lessons for kids her age in a neighboring town...

Here she is on her way to her ballet lesson today...

"First Position"...she loves watching herself in the mirrors

Josephine Ballerine...

Just 5 min ago...Sammy doing homework. He's had a great time at school this week and the teacher is real happy with his progress!

Josie was coloring while Sammy did his homework...of course she colored ballerinas... ;-)

Tomorrow Josie's wish is supposed to be fulfilled. "Make-a-Wish" ordered a play structure that is supposed to be built in our yard tomorrow by a local company. They need to pour some concrete and put it all together. Unfortunately it is pouring down rain at the moment and they are not sure whether they can built the mini playground tomorrow. That would be a real bummer since Make-a-Wish already ordered a cake for the party and we invited her friends to be there when she sees it for the first time... Let's hope the weather holds. I will post pictures of the event.

Day trip to the "Teufelstisch"

2010-09-24T09:38:00.002-05:00

A couple of weeks ago we took a day trip to the nearby "Teufelstisch", an enormous rock formation (14 meters high). The weather was gorgeous and the kids had lots of fun there.

Josie enjoyed the giant swing at the playground.

You can see the "Teufelstisch" in the background and the gorgeous playground that was recently built in the front.

Of course we hiked up to the rock formation (it is really not very far up) and I was very proud of Josie for having made the short hike without complaints! :-)

There are all kinds of stories about this rock formation due to its weird shape...

Pictures August 2010

2010-09-01T12:14:00.003-05:00

In my dad's car on our way to Neustadt where we took a little day trip to. It's a gorgeous little city along the "Deutsche Weinstrasse" in the midst of grape vines...

Tim and Sam in the city square in Neustadt

Josie enjoyed hers and Mama's ice cream ;-)

Happy times...

August is already over and fall has begun. Sam's first two weeks at school are over and he's had his ups and downs. But he seems real interested in what they teach him so we're hopeful that he'll have a good school experience. He's been playing school with Josie at home and it's hilarious to watch teacher Sammy. :-)

Josie is blosoming. She has such a happy disposition and her little happy comments bring smiles to our faces on a daily basis. She'll declare:"Today is a beautiful day, mommy" and admires every flower and butterfly that she encounters. End of chemo is coming up and we're excited about that. She'll start her new Kindergarten on 4 October, two days before she turns 4. She talks about her birthday non stop already and is super excited about it.

On 18 October I will start going back to school. I got accepted to the University of Saarland and I am very excited about it. I will go for my high school teaching degree with English and History as my main subjects. The university is a 30 min drive from here so that's ok. It will still be quite hard to manage going to school, picking up the kids on time and everything else, but it's something we'll have to figure out and hopefully get used to. It's important for our future. As a teacher I will have a decent income, the same vacation times as the kids and I'd have a job that I'd love!

I wish you all a wonderful fall. Enjoy the changing of the seasons! :-)

Sammy's First Day at School

2010-08-18T01:48:00.002-05:00

Our big boy on his big day holding his "Schultuete"...In Germany it's a custom to make a "Schultuete" for the children. It's filled with candy and little toys and it makes their first day at school a little sweeter. :-)

Walking to school on his first day...

In his classroom...Sammy is seated next to Nico who is his friend from Kindergarten! :-)

Sam and Nico, proudly presenting their Schultueten!

What's in the Schultuete??? I kept on telling him that I stuffed a bunch of potatoes and carrots in it, and he was a little worried that that might be true. :-) But he was very happy when he saw what was really inside.

Summer 2010 pictures

2010-07-23T02:32:00.003-05:00

At the "Kurpfalzpark", a wonderful wildlife/adventure park in the Palatine Forest (40min drive from our house)...the kids got to feed "Bambi" and they loved it!

Sammy's last day at his Kindergarten. He's officially a school kid now and super excited about it! School starts on 17 August

Daddy came home to show Sam how proud he is of him for "graduating" Kindergarten!

Bye, bye World Cup 2010! We had tons of fun!!!

While we dressed up in black/red/gold to cheer on our team, Josie dressed up in her usual outfits...what can I say...she's all princess

At the "Kurpfalzpark", feeding the goats (please look the other way, Dr. C.! lol)

Feeding the parrot

Pictures....Augsburg, Baby Ida and more

2010-06-26T12:11:00.003-05:00

Enjoying a good book at Oma & Opa's house...I have to apologize, the pictures are not in order, I haven't quite figured out how to do that yet...sorry

Sammy trying to play Oma's "Ziehharmonika"

Tim wanted to have a picture of Josie's "crazy hair" (as he calls it when it's freshly washed)

We had a GREAT outcome at St. Baldrick's Day today...but that will be a whole post on its own, coming soon with nice pictures. I thought you might want to see Tim's mug shot of "before and after" LOL

The kids and me during a brief stop on our way to Augsburg

Ta da...here she is...Baby Ida Pauline! She is soooo adorable!!! Congratulations again to my sister and her husband! :-)

Tim and Ida

Josie and her cousin Timmy...they are getting along great recently and they had tons of fun together

"Schland oh Schland"....GOOOO Germany! Josie and our Vuvuzela...the most annoying instrument out there in my opinion; it kind of sounds like an elephant squealing in distress I think

Reminder...St.Baldrick's!

2010-06-25T00:03:00.002-05:00

Hello everyone!!! It's still time to support us in our St. Baldrick's Day event by pledging on Tim's head! So far we have raised over 3700 Dollars and we have 48 shavees! The event will be this Saturday, so please go online and donate for this worthy cause: http://www.stbaldricks.org/participants/mypage/participantid/409455

We are thrilled to have such a great response to this event. It's the first ever here at Ramstein but we hope to make it an annual event. It's our way of giving back a little and it's very important to us.
So please support us, donate money!!! A big thank you to everyone who's already plegded on Tim's head! We appreciate it! You are all heroes for Josie and all the other children with cancer!

Ida Pauline

2010-06-15T14:37:00.002-05:00

I am very happy to announce that my sister had her third child today. Uli and Florian have a sweet little baby girl, named Ida Pauline. She was delivered via scheduled C-Section, she's healthy and Uli's doing great. We are very happy to welcome her into our family! Welcome to the world, little Ida. Happy Birthday, baby girl!!! :-)

We are going to drive to Augsburg on Friday to visit with this cute addition to our family and her happy parents. I will post some pictures then. I wish I could visit right away, but we have a ton of appointments this week so we're not able to come earlier. We can't wait to meet her.

Congratulations, Uli & Florian and of course, congratulations to the proud siblings, Lilly & Timmy!!!

St. Baldrick's Day

2010-06-13T01:53:00.002-05:00

Hello everyone! It's time again for St. Baldrick's Day!!! We participated in this fundraiser last year in Omaha and this year we're organizing our very own here on Ramstein Air Base. On 26 June 2010 we're having our very first St. Baldrick's Day on Donelly Park on Ramstein. A bunch of "Shavees" have already signed up and of course, Tim is one of them.

Please support our fight against childhood cancer by supporting this worthy cause. St. Baldrick's funds are granted to some of the most brilliant childhood cancer research experts in the world to find cures and improve quality of life for patients and survivors.

How can you donate? It's simple...just follow this link and pledge on Tim's head (quite literally): www.stbaldricks.org/participants/mypage/participantid/409455

On St. Baldrick's website you can find all kinds of good information about the organization!

Thank you all in advance for donating! You are all helping save our daughter's and so many other children's lives!

Summer days

2010-06-08T11:33:00.002-05:00

The kids in front of our little sitting area out back...

Tim and I made an attempt at plants...we both don't have a green thumb but so far so good. Even our tomatoes are growing exceptionally well

At Zoo Landau during their "Dream Night"...only families with special needs kids were invited. The Zoo opened at 6p.m. that night and the kids got to feed the seals and do all kinds of fun things. And yes, Dr. Coulter, we let her feed some of the animals (including a lysol shower after every single one of them)...lol...I still remember how you told me that you wouldn't even let your healthy kid go into the petting zoo.

Josie LOVES her snowwhite outfit...she got it since she graduated from baby girl to big girl :-) She tells EVERYONE that she doesn't need a binky or a diaper anymore and that those yucky things are for babies. It's hilarious. We are very proud of Josie for having achieved two major steps in her development within just a couple of weeks. You go girl!

MRI done...

2010-06-01T10:13:00.002-05:00

We got to LRMC at 6.50 a.m. this morning and we kind of expected to be out around noon. Sammy was brave while he got his IV put in and it took a while to get him sedated. They used Versed and something else. Then we rolled him to the MRI and waited. The whole thing took about 1 hour and a half. Once we rolled him back to his room in the Peds Unit he started waking up already. He was totally out of it and all of a sudden started kicking, boxing and screaming. We all got a fist or a foot of his either in the face or tummy. It took 4 guys to hold him down while he was completely delirous for a whole hour. The doctor said that this can happen when someone wakes up from Versed. It was horrible to watch him scream and kick and box and exhaust himself. We had never experienced something like that before and hope we never will again. After an hour he just passed out from exhaustion and then slept for about 2 hours afterwards. Then he was feeling a lot better and we were released around 3 p.m. We don't know any results yet and probably won't know for quite a while. But no news is good news. If something huge grew, they would surely call us.

We're now home and Sammy is still very wabbly on his feet. He gets to watch a lot of TV now and he is enjoying that. He seems to remember a little about being held down and swaddled in a blanket to keep him from kicking so much but he hasn't said much. We're just thankful that it's over.

Good times

2010-05-31T09:42:00.002-05:00

Sammy's trial period for the ADHD meds is over and what can we say....it's AMAZING!!! We love it and more importantly, Sammy LOVES it. He calls the pill his "lil' helper". All of a sudden he can focus on playing and he can spend hours playing now. No more "I don't know what to do" or "I am bored" or "I need action". It's wonderful! He doesn't need to be told everything a million times, he'll do it the first (okay...sometimes the second) time around. We are much less frustrated (the whole family) and it's much more easy going. He now got put on a time released medication called "Concerta". He only has to take it in the morning and it works all day.

Tomorrow we're taking him in for his brain and spine MRI at Landstuhl Regional Medical Center to see whether his cyst has grown. It'll be a tough day since he'll need to be poked and he's already panicked about it. Also, our friend's daughter Joanna has brain surgery tomorrow. The rest tumor has grown and they're trying to remove the whole thing. Our thoughts are with you guys!

Josie's doing great. She has decided to grow up and gave up her binky and diapers within the last 4 weeks. We're tremendously proud of her! She's become quite strong willed but it's so much fun seeing her develop her lil' personality more and more.

Hope everyone's well. At this point we don't know when we'll be able to come to the U.S. for a visit, Grandma. Sounds like you did a huge job on the house but I am sure it's beautiful now. :-) Big hugs to everyone!

Sammy is 6 years old!!!

2010-05-18T08:26:00.003-05:00

Sammy and his friends (from the left): Noah, Kilian, Sammy, Nico and Silas

Gift time!

The boys had a blast seeing "airplane stuff" at Tim's work

Happy Birthday, Sammy!!! You are an amazing child and we love you dearly!

Update

2010-05-13T14:40:00.002-05:00

We're doing pretty well. It's been a little stressful with having a lot of appointments. Sammy has stuff going on since he's starting school in August. So there are a bunch of appointments that we have with that. His next MRI is scheduled for June 1st. It should be done and over with already but LRMC had to cancel the MRI last minute. The oxygen monitor in the MRI machine broke. So Sam will go in for his scan the same day that our friend's daughter, Joanna, has to go in for her second brain tumor surgery. They are hoping that this time around they can remove the rest tumor so that it will never ever come back again.

Josie is going in for a Spinal Tap with intrathecal Chemotherapy tomorrow. It was nice not having monthly taps anymore, that's for sure. We're not looking forward to tomorrow but it needs to get done. She'll also get her IV Vincristine and start another rounds of steroids.

In October Josie will start regular Kindergarten. She won't need physical therapy anymore since treatment will be over on 14 October. She'll start in the same group that Sammy is leaving when he goes to school. She's excited and so are we. We don't want to have to deal with anything "therapeutic" for a while, if you know what I mean. Josie also needs to make more friends here in our city. She asks if she can invite friends from her Kindergarten over, but with the therapeutic preschool it's just not possible, since the kids come from all over the place and live too far from us.

So please keep us and especially Josie in your thoughts when she goes into the procedure tomorrow. And pray for little Joanna that her brain surgery will go as planned and they are able to remove the rest tumor.

Before I forget...we are proud to announce that Josie has been binky-free for a little over a week now. She's done a great job and it wasn't all that hard after all. We're just dreading what will happen now that she's going back on steroids since that's usually when she needed her pacifier the most. So hopefully she won't ask for it because we might not have the heart and the nerves to say no.

Quick update

2010-04-24T13:24:00.002-05:00

I am mostly posting on Facebook now and I got lazy with the blog.

We have been busy with life, Kindergarten, therapies, doctor visits etc. Everything's good though. Sammy is on some new medicine for his ADHD and we'll see how he'll do on that. His diagnosis took 3 months but we're glad they're so thorough here. This Wednesday he's going to the Military Hospital for a brain and spine MRI to see if his cyst has grown since he's had some balance and pain issues. He's okay though on most days and we are not quite sure why he gets pain in his feet on some days and balance issues on others. We'll find out soon.
Josie's been doing great! Her therapy is going well, her counts have been stable and we're real happy with all her progress. We are really looking forward to October when her therapy is over and done with. We're planning on having a "Josie beat Leukemia" party then. :-)

The weather is finally gorgeous and we're enjoying our backyard. We're looking forward to our friend Joel coming for a visit. He was our neighbor in Nebraska and him and his family became very close friends of ours. He'll be working at Ramstein for a week and we'll get to spend some time with him which is awesome. Sure wish he could have brought the whole family along! :-)

The CureSearch walks are going on and I urge all of you to support your local walks and families. It's so important that we find a cure. If you go to www.curesearch.org you can find information about it. We did the Omaha walk this year and we got lots of support from friends and family. Please support this good cause even if we can't participate this year and donate for this wonderful cause! It will benefit all our children. Thank you!

New pictures

2010-04-24T13:16:00.002-05:00

Today we went to "The Month of the Military Child" Party at Pulaski Barracks. We had beautiful weather and the kids had so much fun. There was face painting, bouncy castles, demos etc.

Yes, this is a real machine gun that Sammy's got his hands on. He got to climb on top of a Hummer and he was quite impressed with the big gun.

My beautiful princess and I

Star Wars is everywhere...even in Germany! Boba Fet (or however you spell his name) posed for a picture with us

The kids in our backyard

Happy Easter!

2010-04-04T01:37:00.001-05:00

Happy Easter from the Beardsley family to all of you! We hope you enjoy a beautiful holiday.

Frohe Ostern! Happy Easter!

More pictures

2010-03-24T05:42:00.002-05:00

This is how Josie decided to go to Kindergarten yesterday...as the Easter Bunny :-)

This morning...

"Germany's Next Topmodel" lol

Sammy's Kindergarten had a little play today. The parents were invited for a nice breakfast and then we got to watch the play. It was adorable. "KeinOhrHase" by Till Schweiger. Those of you who know it can probably imagine how cute it was! :-)

Finally some pictures!!!

2010-03-21T02:31:00.002-05:00

Sammy proudly wearing his handball jersey before his first game yesterday

Waiting for the game...

Josie at the Oncology Clinic with Dr. Lothschuetz, her oncologist in Homburg

Daddy and Josie in the waiting area at the Clinic

Rocking the house...uh...horse

Hmmm

2010-03-19T01:15:00.002-05:00

The day was long and we still don't really have answers. I wasn't too impressed with the Neurologist at LRMC to tell you the truth. He kept on saying that I am asking very good questions (such as: could all these symptoms Sammy's been experiencing be a symptom of slowly rising brain pressure?) but that he doesn't have answers. He always said things like "could be, doesn't have to mean that though". Anyways, we'll do an MRI in a couple of months, this time including the whole spine as well. Then we'll go off base to see experts most likely at the University Hospital of Mainz. They have a very good reputation.

A 30 hour day

2010-03-18T01:04:00.002-05:00

We had our orthopedic appointment yesterday and he didn't really find anything that accounts for Sam's foot pain. He strongly urged me to take him to a Neurologist. He did prescribe some inserts for his shoes, since his right foot is mildly bending at the ankle, but nothing major.

So off we go to the pediatric Neurologist at Landstuhl Regional Medical Center today. We have a crazy day ahead of us. At 9 a.m., Tim and I have to be at Sam's evaluating psychologist at the Reha for a parent inquisition (Autism screening), Tim will have to leave early from that to pick up Sam and bring him to his 11 a.m. appointment with the Neurologist at LRMC. I am going to join them at LRMC as soon as possible. Then I am supposed to pick up Josie around 12.30 p.m. for her appointment at the Oncology Clinic this afternoon. Oh boy...can't the day have 30 hours so I can squeeze some time to breathe in there?
The Neurologist will most likely to a CT scan to get a quick idea whether the cyst grew or not. Tim and I think that there is a possibility that his cyst might have to do with all the other issues he's been having these past months....his eating issues and nausea for example that we've dealt with a couple of month ago. The cyst is very close to the brain stem, which is responsible for feelings of hunger and thirst amongst many other things. We'll see what the neurologist says.

Steroids and more

2010-03-15T01:33:00.003-05:00

It's been a crazy weekend with Josie being back on steroids and Uli and Lilly being here. Poor Josie is feeling very crummy. She gets very sad and just wants to be alone. I will try to send her to Kindergarten today, since the last couple of times it helped distract her and she was feeling much better there. We'll see...if it doesn't work, they will call me.

Sammy's been a whole other kind of worry for us...He's been having pains in his right foot for about a month now. They come and go. Last week his right hand started doing the same thing. The last couple of weeks I noticed that he falls a lot without a reason but I thought it might be due to the heavy winter boots. But on Friday, his Kindergarten teacher took me aside and said she urgently needed to talk to me. They have observed him limping off and on at Kindergarten and also, he's been falling often without apparent reason. So they have noticed too and that frankly freaked me out. So I took him to the pediatrician on Friday. He said it may very well have to do with his brain cyst, but it could also be an orthopedic issue. So we're being sent to an orthopedic doctor to check out if he has an issue with that. He instructed us on what hospital to go to in case he has symptoms of increased brain pressure. So more worries...like we needed them. But thankfully this weekend was good. No obvious symptoms, so we'll keep an eye on him and make that appointment with the orthopedic doctor.

This week...

2010-03-11T09:24:00.002-06:00

...was pretty uneventful. The kids have had lots of fun at Kindergarten. I found out that Josie can ride a tricycle like a champ! Her Kindergarten has a huge play hall and when I came to pick her up yesterday, she was racing around on a tricycle (during physical therapy). My jaw dropped because everytime I sit her on her tricycle at home she pretends she can't ride it at all! That little stinker! ;-)

Tomorrow we're due for counts, her push of IV vincristine and another round of steroids will start up also. We're a little nervous about her counts since they have been kind crazy recently. First they have been too high (around 4.0), then they cranked up the chemo, after a while the counts came down to 2.0, and last week they went up to 7.7 without apparent reason. So...we're a little nervous. It's always in the back of our minds that she was diagnosed with a very high white count. Doctor said not to worry, but we can't help it.

Counts

2010-03-04T09:34:00.002-06:00

Josie and I went to Clinic to get counts today. I just called to get the results and her White Count is abnormally high. It's 7.7 (still low for a healthy kid but huge for Josie). We usually don't see high counts like that until right after her steroid week. Weird...but the doctor is not worried. She said there is no indication that something bad is going on. Might be some kind of bug or so. We'll recheck counts next Friday, when she'll also get her next dosis of Vincristine.

Other than that, both kids are doing fine. Sammy started playing handball with a team here and he loves it. They do all kinds of other activities too and so he's at the theater right now with his team watching a kids' play. Handball is like soccer, just played with the hands, in case some of you don't know it. :-)

So everything is good. I am not posting all the time anymore since I am getting a little lazy about it. Sorry. I will try to post more often again.

Spring...

2010-02-24T06:43:00.002-06:00

...seems to be here! It's amazing! No more snow, warm temperatures (10C), the first flowers are coming through and the birds are singing. I LOVE IT! Sam and I have been on bike rides and have been playing soccer in our yard. Finally we get to enjoy our nice backyard. Josie is rather lazy and we need to motivate her to go outside. Her physical therapist said we need to work on her tricycle and "Laufrad" skills. She's trying it at her Kindergarten as well, we all just have one big problem: Josie doesn't care for tricyles, Laufrad or bicycles at all! How do you motivate a kid that simply doesn't want to do it?! Weird, Sammy was all over this moving things when he was Josie's age. But all kids are different. Her physical therapist just said that it's important for her coordination to learn these things. So we'll try...Who knows, maybe she'll surprise us all? :-)

An angel grew wings...

2010-02-23T06:34:00.002-06:00

We are deeply saddened to have gotten the news about the passing of Ellie Rose Scherbarth. Ellie has lost her battle with cancer yesterday after a long and tough fight. We are praying for Ellie and her mom Annie. We got to meet Ellie at Clinic in Omaha and in the hospital there. She touched our lives only briefly but she will forever have a spot in our hearts.

Back home

2010-02-20T10:26:00.002-06:00

We were in Augsburg for the last few days and I didn't have my computer with me for blogging. We had a nice few days and celebrated Tim's birthday with my parents, sister and family, brother and family and in the evening, Tim and I went out with some friends. We had a good time!

The kids are doing well. They both took this week off from Kindergarten since we were gone. Josie has her next doctor's appointment on Tuesday. She's been having some odd aches and pains though and we might have to take her in a little earlier. She says her ear hurts and her mouth hurts off and on. We'll see what's going on with that. Other than that they're doing good and we're just going to relax this weekend.

Monday

2010-02-08T09:19:00.002-06:00

Another week has started. Josie's Kindergarten teachers are finally back, they had both been sick for 2 weeks and we weren't very happy with the subs.
We are going to the hospital on Friday for a Spinal Tab with intrathecal Methotrexate, IV Vincristine and the first dose of her steroids. Hopefully Josie's counts have come down a little too (how weird does that sound?) since they've been too high for the past 3-4 weeks. We have been constantely upping her Chemo to get her counts "under control". But the doctor said that we shouldn't worry too much. Easier said than done though.

Another long week

2010-02-06T01:49:00.002-06:00

...is over with. Sammy had his first appointment at the Reha psychologist. And no...I did NOT mention the snowman with boobs. LOL Anyways, we have to fill out an autism screening to exclude Asperger's or autistic tendencies. That comes first, then they'll start the whole ADHD diagnosis process. The psychologist already said she doesn't think Sammy is a "pathological autist" (no surprise there) but she can't say yet whether he has autistic tendencies or not. It could all be the ADHD too. At least the whole process started and we should have an answer by late March.
Josie had Clinic again on Thursday. They ran more tests than usual since the Kindergarten (and we at home) noticed that she has been drinking a lot more than usual these past couple of days. The Kindergarten was really concerned, Tim and I were more shrugging our shoulders since Josie's always been a kid who drinks a lot. Anyways, all tests (Diabetes mellitus, Diabetes insipidus) negative, so she's fine. Her counts are still too high, WBC 4.5, ANC 3000 so more Chemo again. I wonder when they'll start coming back down. Our next Clinic appointment is next Friday. Josie's scheduled for a Spinal Tap, Vincristine and her next round of steroids. Why do her steroids always seem to coincide with days off, fun things planned etc. It's always like that...Can't be helped though.
Tim's birthday is coming up too and I still have no clue what to get him. Unfortunately I am out of the age range where I can just draw a picture and get all kinds of "how cute" in return. Josie and Sam can pull that off, but not me. LOL

Snowman...uhh...woman

2010-01-29T02:30:00.002-06:00

It all started out like a "normal" snowman building fun afternoon...Opa and Sammy at work in our backyard.

Then....Sammy decided the Snowman was missing 2 vital attributes

Sammy with his Snowwoman (and the HUGE you know what)

Daddy and his princess

We love seeing her laugh like that! :-)

New pictures

2010-01-24T00:41:00.002-06:00

The lady is posing...Sammy taught her that; he said:"Josie, you have to stand like that because all girls stand like that." It was hilarious.
Miss Karen, do you recognize the dress??? Thank you again, she loves it! :-)

Rockclimbing with the Parent Initiative of Kids with Cancer...Sammy getting ready on the wall with climbing teacher Holger right behind him. The point of the rock climbing is for the kids to get a better self esteem and feeling for their bodies. Sammy LOVED it!

This is how high he was the second time he went up. Boy am I glad that they have those ropes on them! In this picture Sammy just let go of the wall to go back down.

Yesterday...Josie found this big hair thing with a flower on it and she had to put it into her hair right away.

Better

2010-01-21T04:47:00.002-06:00

Sammy's eating is getting better. He still tells me he doesn't want to eat but when I tell him he has to, he doesn't fight it too much anymore. His blood work was totally fine (auch die Schilddruese, Tante Maria! Aber danke fuer den Tipp).

Now we have to tackle the possible ADHD thing. Still haven't heard from the Reha doctors. Will have to call up there soon.

Josie's due for a CBC today at the Clinic. I'll have to pick her up early from Kindergarten and drive straight to Homburg.

Please pray for little Ellie and her family. Ellie's a little girl whom we've met at Children's in Omaha. She was diagnosed with Wilms' tumor and just recently relapsed. The tumors have trippled in size in 2 weeks and Ellie's mom Annie was told yesterday that there is nothing they can do anymore but make Ellie comfortable. Our hearts go out to them, we are keeping Ellie and Annie in our prayers.

Sammy

2010-01-20T01:46:00.002-06:00

Sammy has been going through some rough times lately. His attention problems have increased and we finally had an appointment at the Reha Clinic for him. The doctor strongly suspects ADHD and they're starting the whole ADHD diagnostics. It sounds like a semi-lenghty process. But that's fine with me. I didn't like how we basically filled out paperwork and Sam was diagnosed with ADHD in the States. No psychologist ever observed him. Here, they'll do that. He also just had an EEG done yesterday to exclude any problems coming from his cyst or anything else. I am waiting for a phone call from the psychologist but who knows when that'll happen. They are also going to do an intelligence test since the doctor suspects that he's highly intelligent.

Also, the little man's been very picky about eating. He skips whole meals and says "my stomach tells me not to eat". He lost a couple of pounds and looks super skinny now. They did blood work to see what's going on, but everything was fine there. I hope it's just a phase, he really can't afford to lose any more weight.

Monday

2010-01-18T07:19:00.002-06:00

We had an okay weekend. Sammy had fun rock climbing. We went to a meeting of the parent initiative of kids with cancer, they do rock climbing for the kids to boost their self esteem. Sammy made it all the way to the top of the wall and was very proud of himself.

Josie didn't have a very good weekend though. Ever since she got her Vincristine on Friday, she's had major pain in her feet and legs and sometimes even her hands. But her right foot is the one that's bothering her most of all. It hurts me to see her in so much pain and to see her try to hop on one foot because the other one is hurting her so much. We try to give her Ibuprofen as much as possible but it only does so much. She is better today though and even went to Kindergarten. Hopefully it stays that way and it was just a temporary thing from the Vincristine shot.

Sorry

2010-01-15T07:25:00.002-06:00

I am sorry for not writing that much anymore. I have been on Facebook lately and therefore neglected the blog.

Josie is doing great! Her counts are too good, WBC 4000, so they are cranking up the chemo. She had her push of Vincristine at Clinic today and already told me her feet hurt. When I touched them, they were ice cold. She's also back on steroids and I am already feeling the effects of that. We've been potty training her these past couple of weeks and she's been doing great. The last 4 days, no accident! But of course now, back on steroids, she regresses again. I hope that she won't give up during this next week of mood swings, bone aches etc. She's so close to be completely out of diapers during the day. Either way, we're proud of her!

Sammy is doing good too. He has been worrying us a little since he has ZERO appetite. But he's still full of energy and has been spending a lot of time at his friend's house. Lots of playdates for him and he is loving it.

The past few days

2010-01-05T01:28:00.002-06:00

We went bowling on Ramstein Air Base and the kids had a blast!

Sammy makes this real funny looking pose when he bowls...not to speak of the "victory dance" after... :-)

The princesses Josie and Joanna while dancing

New Year's Eve...Daddy gave the kids these fat ear things since they don't like the loud noises that the rockets make. Sammy loved to watch the small fireworks that Daddy lit up in the backyard. He was in bed by 9 p.m. though and we tried to wake him up for the big fireworks at midnight, but no luck. He was too tired.

Josie and a gigantic "Wunderkerze" (no idea what that's called in English)

Finally some pictures

2010-01-03T12:16:00.002-06:00

Christmas Eve 2009 at Oma and Opa's Haus

Josie in her christmas dress...she picked it out herself and she was very proud to wear it :-)

Having fun

This is the face Josie makes whenever I tell her to stop doing something...for example: "Josie, stop eating with your fingers. Use your fork!"...then she makes the face, how can you keep up a serious face when she does that?!

The artist at her new easel which she got from Santa aka Grandma and Grandpa

Merry Christmas and a Happy New Year

2009-12-27T01:36:00.002-06:00

Between the holidays we wanted to wish all our family and friends (and of course all blog readers) a very

MERRY CHRISTMAS and a HAPPY NEW YEAR!!!

May all your wishes for 2010 come true and may everyone be blessed with happiness and health.

Our wish for the new year is that Josie will continue doing so well with her treatment and that she'll continue to do well once treatment stops in October of this coming new year. It's a very scary thought but also a happy one at the same time. Finally, treatment will be done and over with...We also wish for our son Sammy to have an excellent start in school next summer.

We are thinking about all the families whom we have met these past years. Families who are fighting the same cruel battle that we are fighting! We wish you and your kids all the best and most importantly HEALTH!

I will post christmas pictures soon. We had a very good time in Augsburg and the kids eyes were glowing all day with excitment. It was lots of fun! More later.

This morning

2009-12-22T00:38:00.001-06:00

My adorable kids this morning! Josie has a Christmas party and "dressed up"! :-)

Steroids

2009-12-21T05:59:00.002-06:00

Oh boy, those steroids...Last time wasn't so bad, this weekend, they gave us quite some trouble. Poor Josie's bones hurt and I put her into the bathtub several times since the warm water usually soothes the pain. She didn't sleep very well either. She's got quite the appetite and while she was eating her mashed potatoes, she yelled at me to cook some "Kaesspaetzle" (bavarian dish: home-made noodles with cheese).

I went to her Kindergarteen with her today since I didn't think I could leave her alone with her current mood swings. But it went surprisingly well and she had lots of fun! Distraction really works sometimes. We'll do the same again tomorrow, they have a christmas party in her group so that should be fun. We'll be leaving for Augsburg on the 23rd once Tim's home from work. The kids are really excited about Christmas! Whenever you asked Josie what she wants for Christmas she said "vacuum cleaner" which I thought was hilarious. Today she said that she wants a helicopter! Thank goodness, my kids aren't asking for big things. hahaha :-)

Friday

2009-12-20T02:16:00.002-06:00

This was the "smoothest" Spinal Tap ever! Josie went to sleep with a very small amount of Propofol (usually they have to max her out) and she was awake 5 min after. We stayed for a couple of hours and then left. We were in the room with an adorable 5 year old and her mom. The girl had just been diagnosed with Wilms' tumor and was about to get her first chemotherapy treatment. I grabbed a chair and sat next to the mom and started chatting. She told me later that in the whole 2 weeks that they had been there, no one had ever done that. And she really needed to talk about what was happening. I understand that so well...we exchanged phone numbers and I hope we'll stay in touch.

On Saturday, Tim took Sammy ice-skating for the first time ever. It was really cold yesterday (-12C) and Sammy did fall quite a lot but that was to be expected. They still had lots of fun! And since Tim made Sammy wear all kinds of pads and a helmet, he didn't even come home with a single bruise

Clinic Tomorrow

2009-12-17T09:23:00.002-06:00

Tomorrow Josie's due for another Spinal Tap with intrathecal chemotherapy and a push of Vincristine. Also she has to start her steroids again. So NOT looking forward to it. But it wasn't that bad the last time around, so we're hopeful.

After big communications problems (emails didn't get to either one), Dr. Coulter and Dr. Krenn (Josie's doc here in Homburg) decided to switch her back to Methotrexate for her intrathecal treatment. She's been on Ara-C because of her hand tremors and gait problems. These issues have resolved and the doctors feel that it's time to switch her back since Methotrexate is the very best medicine for CNS relapse prophylaxis. So we're hoping that her tremors won't come back but we also feel relieved to know that she's back on MTX, since there is no doubt that it's better than Ara-C.

We're hoping that Josie gets through the procedure okay and has no problems. Then we should get home sometime in the afternoon. Sammy will stay in Kindergarten over lunch and I'll pick him up when I get back from the hospital (or Tim, whoever is first).

Back from Clinic

2009-12-15T09:41:00.002-06:00

Everything went well at the Clinic today. Josie's counts are good: WBC 3.6, ANC 1.8. They're upping chemo a little. We're due back on Friday for a Spinal Tap with Ara-C and Vincristine. I will make sure that she'll get Zofran I.V. this time since she threw up all over the place after the last tap once we got home.

The Nurses surprised us with an enveloped stuffed full of gift certificates to some stores. It's a Christmas gift from the parent initiative of kids with cancer to all of "their families". Wow! What a surprise! :-)

Pictures

2009-12-13T12:35:00.002-06:00

It was snowing today for the first time. This is the view down our street from across the street of our house.

Our house is the one with the garage door open. We're real happy with the house that we picked.

The princess was clowning around while posing for a picture!

Sammy in our backyard shoveling some snow. He was sooo excited about the snow!

Sam and parts of our backyard

Weekend

2009-12-13T02:50:00.002-06:00

We have had a nice weekend so far. The kids are always excited when Friday rolls around and I am glad to escape the morning hectic for a couple of days.
Josie's Kindergarten group went swimming on Friday and she had so much fun! Her Kindergarten has an awesome swimmingpool (they use it for therapies too) and you can move the floor up and down. So they asked me how tall Josie was and adjusted the floor so even she could stand in the water. I love all the possibilities they have at her Kindergarten.
Also, I got approached by the psychologist of the Kindergarten. He comes into the group and does behavioral group therapy once a week. This week they were talking about feelings, being sad and empathy. He was super happy with Josie since even though she's the youngest, she can talk very well. She played along nicely and he was impressed. Anyways, he also told me he was going to establish a baseline soon with her (in the new year) so we know where she stands. I asked him whether he is familiar with all the neuropsychology issues that long term chemotherapy can bring with it. He told me that he'd be happy if I brought him the papers I have at home from Dr. Napolitano. Dr. Napolitano spoke at the Candlelighter's in Omaha and showed us exactly what kind of problems can arise.

On Saturday, we had our friends the Pfannenstiel's over for dinner. It was nice being able to get together again after this long period of swine flu, coughs etc. The girls had tons of fun and Sammy and Gavin basically made a short appearance at dinner and then disappeared in the playroom upstairs again. :-)

Today we woke up to snow. The streets are powdered and the kids had to get into their snowsuits right away to play with the snow. It's still snowing now. Boy am I glad that I had winter tires put on my car yesterday! hahaha Good timing, I guess. Later, Sam and I will go to a birthday party at an indoor playground from a kid in Sammy's Kindergarten. Tim will stay here with Josie. He got up at 4 a.m. and he's tired. He's trying to change his schedule since he has to be at work at 2.40 a.m. tonight. Poor Tim! But it's only for a couple of days, then this excercise will be over.

Wednesday

2009-12-09T10:56:00.002-06:00

Josie's Kindergarten held a really nice "Adventfeier" today. It was a get together of parents and children in their big hall that was nicely decorated with Xmas stuff. The kids had prepared a cute little christmas play and Josie's group sang christmas songs and "played" instruments. It was adorable! It's amazing to see how our little girl has found her place in that group. She's truely a big girl now. :-)

Tim is working til who knows when today. They are having an excercise and he may be gone til 1 a.m. or later. I think he might get tomorrow off because of it so that's a bonus. The kids and I had a nice afternoon, we played in the yard, then baked German style pancakes (big and flat like the French crepes) and now we're getting ready for our bed routine.

Monday

2009-12-07T08:49:00.003-06:00

We're back in Ramstein and Sammy went back to Kindergarten today after his 2 week break. I still think he's a little pale but then again, isn't he always? He's barely coughing anymore and the doctor said it's fine.
Josie and I went to the Clinic for counts today and they were fine. The doctor also wrote us a letter for her Kindergarten, stating that she's non-contagious and fine to go to Kindergarten. So she'll start again tomorrow.

In Augsburg

2009-12-03T15:00:00.002-06:00

We have made it to Augsburg. The kids and I left Wednesday afternoon and had a nice uneventful drive. Tim just got here now and we're looking forward to spending a couple of nice days here.
The kids, Oma and I went to the Christmas market with Uli, Flo & kids today. It was fun! There was a puppet theater there and the kids LOVED it. Josie's never seen one before and was totally amazed. She didn't want to ride the little kids' ride they had there though. We'll go back tomorrow night to see the angels make music. It's beautiful. They will appear at the old Rathaus (city hall) and play their instruments. Josie and Sammy can't wait to see them.

On a different note...
Please pray for little Ellie and her family. Ellie is a little girl whom we've met at Children's multiple times. She had Wilms tumor and was getting better. She is a very brave little girl. They just found out that her cancer is back and there is not much hope. We are overwhelmed with sorrow and we are praying for Ellie and her family.
Also, our little friend Ava is in the hospital. They are not quite sure what is going on yet, but she's been having fevers, her ANC is 0 and she has jaw pain. We are praying for Ava and her family too. Ava has been Josie's special friend at the Clinic. Ava is 4 and also has ALL. We are thinking about you guys! Get better soon, Ava!

All better

2009-12-01T06:30:00.002-06:00

Today everyone is feeling much better. The kids barely coughed anymore and I have a good feeling that we're seeing the light at the end of the tunnel. :-) We also found out that Tim has Friday off so we'll all be heading to Augsburg after Josie's appointment and Tim's work on Thursday. At least that's the plan. Can't be too sure these days.

Also, Tim's car finally made it here. We'll be picking it up later today. Tim's all excited. I think he's fed up with driving his mother-in-law's tiny red toyota around. hahaha But what would we have done without it. Danke nochmals, Mama! The funny thing is that Josie said right away that there is a spider in daddy's truck and she won't go in it! That happened about 6 months ago. She saw a TINY spider and freaked out. Oh well, I guess we will have to prove to her that it's spider-free now and she can go back in it. Oh boy, the girl sounds more like mommy every day. :-)

H1N1 bye bye

2009-11-30T09:16:00.002-06:00

We're done with H1N1...hopefully for good. Sammy's fever's been gone since last Thursday and even though he's still coughing a little, he's definately non-contagious now.
Josie was at Clinic today for a CBC. While we were there she coughed and the doctor was concerned. She heard something in her lungs and now she has to take another antibiotic on top of her weekly Bactim. We have to come back to Clinic on Thursday.
The bad news is that we can't drive to Augsburg as planned this week. At least we'll have to wait til Thursday and see what the doctor says then. Red light for now.

Sam and Josie are still both home from Kindergarten. Josie couldn't go anyways because of her cough and Sammy is still recovering from the flu.

Happy Thanksgiving!

2009-11-26T11:49:00.002-06:00

We wish you all a very HAPPY THANKSGIVING!!!

The kids are both doing better. Sammy's fever is finally gone and he's feeling much better. They are both still coughing but that's not that bad.
We had a mini thanksgiving dinner consisting of...rotisserie chicken. haha
But we each said what we're thankful for this year. And it was basically the same thing around the table: we are happy and thankful that we all get to be together as a family and that Josie's doing so well. :-)

So Happy Thanksgiving from the Beardsley family to all of you!

My day...

2009-11-25T08:48:00.002-06:00

Josie (still on steroids and endlessly hungry and irrational): "Mama, I want Schinkenbrot (ham sandwich) NOW! ... - running to the kitchen to bring her highness the food

at the same time: Sammy sneezes and coughes and Mom's trained ear can tell, he didn't cover his mouth as he's supposed too...so once the sandwich is delivered, mom gets to run and to get the Lysol and other nasty disinfectants to destroy the invisible enemy...

"MOOOM! I NEED another SANDWICH!!!" (Josie)

"MOOM! I feel hot." (Sammy)

"MOOM! WHERE IS MY SANDWHICH???" (Josie, getting louder)

"MOOM!...sneez, cough, gargle" (Sammy)

"SANDWICH! NOOOOW!" (Josie)

etc. etc. etc. :-)

Halting all chemo

2009-11-25T03:22:00.003-06:00

I just got of the phone with Dr. Lothschuetz who told me to hold all chemo til Monday. Josie's coughing a lot and her nose is running non stop. The doctor wants to give her immune system a chance to fight off whatever it is she has. No fever still which is a good thing. She'd definately run a fever if she had H1N1.

Josie dancing...ENJOY!

2009-11-24T08:40:00.002-06:00

Pictures

2009-11-24T08:35:00.002-06:00

This picture was taken early last week, before Sammy got sick. Both kids were ready to go to their Kindergartens.

Josie drawing this morning...it's so neat that she is now drawing real faces and sometimes bodies too.

She drew our whole family, I wrote the names into the corners as she directed me to do. :-) The picture got a special place on our fridge.

The verdict's in...

2009-11-23T12:27:00.002-06:00

...and she's NEGATIVE!!! Wohoo! So far, so good.

Now we need to keep on seperating the kids as much as possible and we're cleaning and spraying Lysol like crazy. Our hands see more handsanitizer than air and we're hoping to keep it at bay. She still developed quite the nasty cough and we're keeping a very close eye on both kids.

As always...thanks for checking in on us! And Dr. Coulter: thanks for your support and help, even across the miles! :-)

The verdict is still out

2009-11-23T08:51:00.003-06:00

Josie was swapped (3 times!) and the results should be back in about an hour. The doctor already gave me the prescription for Tamiflu, an antiviral medicine, in case it's positive, so we can start it right away. She's not overly worried though, since the 2 cases they've had (2 kids with cancer who got the swine flu) did pretty good on Tamiflu.
If the test is negative, it could still be H1N1 and she'll be re-swapped once she gets a fever.

The story continues...

2009-11-23T02:04:00.001-06:00

It's 9 a.m. and I am getting ready to take Josie to Homburg to be tested for H1N1. She's started coughing last night and they want to see her. No fever yet but they are thinking about starting her on Tamiflu.
Sammy is feeling fine, just sneezing and coughing a lot. His temp is down for now and he is in a playful mood.

it's official...

2009-11-22T09:08:00.002-06:00

...Sammy tested positive for H1N1. He has the swine flu. We got a phone call from Homburg this morning with the bad news. The plan is to wait and see whether Josie gets a fever. Once she does, she'll be put on Tamiflu right away. They don't like to give it as a precaution because of the side effects. They also don't want to use it now so it will work once she's really sick.
Now we have to hope that Josie doesn't get it. Sammy is doing fine so far. His fevers come and go and except for being a little more tired than usual, he's feeling fine. He's sneezing and coughing quite a bit though. We're closely monitoring that, since he's had pneumonia 3 times in his life and is therefore prone to that.
Now both kids will stay home from Kindergarten and I am supposed to keep them seperated. Any ideas how I should do that? It'll definately be a challenge.
Well, I gotta go...armed with Lysol, on my way to fight the bad virus :-)

Spinal Tap, Swine Flu and more

2009-11-21T11:58:00.003-06:00

Josie went into the Clinic for her Spinal Tap with intrathecal Chemotherapy and IV Vincristine. Everything went smoothly. Her counts are good too. WBC at 2.7. I asked the doctor whether they administered Zofran (anti nausea medicine) while they did the Tap and he said that they never do that during lumbar punctures. He said no one has needed that yet. So I shrugged my shoulders and we packed our stuff and went home. On the way home, Josie started to complain of tummy aches and I put her straight to bed for her noon nap when we got home. She woke up about 10 min later and vomited all over her bed. Poor thing! I called the Clinic to see whether I could give her Zofran at home and they said yes. The doctor felt pretty bad for saying she didn't need it, but hey, every kid's different, right? Anyways, that was the first time since her diagnosis that the Chemotherapy made her throw up. We're real lucky, she responds really well to the Zofran.

After cleaning up the mess, Josie and I picked up Sam from Kindergarten. He did not look good at all and as soon as we got home, he laid down on the couch without moving. He didn't drink or eat anything. I checked his temp and he was running a fever (38.7C). I got worried that he might have the swine flu since he's got the normal flu shot but not the swine flu one. I called Homburg to see what precautions I need to take since Josie's immunocompromised. The doc told me to come in with Sam the next morning and he'll test him for swine flu so we'll know.
So Sam and I went in and they were really nice to him. We don't have the result yet, I will let you know once I know. He doesn't need Tamiflu since he's not horribly sick. This afternoon though his temp went up to 39.4C and we gave him some ibuprofen. He's feeling ok, just really tired (not to mention the sneezes and coughs all day long).

I gotta go...Josie is super tired, she's back on steroids and keeps asking me to put her down to sleep.

Finally some pictures...

2009-11-18T02:59:00.002-06:00

The princess in her new house

Sammy drew this lovely picture: he told me that it is mommy in a bathing suit with mega hands for good swimming! :-) And no...I don't have 7 fingers on one and 6 on the other hand. That's what's called "art" haha

Finally reunited...Sammy and his friend Nevajo. They have known each other ever since they were tiny babies. Nevajo is 1 day younger than Sam and his mommy Birgit and I have been good friends for 5 years now.

Sam and his St. Martin's lantern. On St. Martin's Day (it's a tradition in Germany) all kids walk to church with a lantern (which they usually make in Kindergarten). There they have a little play showing the story of St. Martin (Roman officer who shared his coat with a poor man and saved him from freezing...Jesus then appeared to him in his dream and Martin layed down his arms and became a Christian, later a bishop even). After church we all walked back to Sam's Kindergarten where there was a big bonfire, hot wine for the adults and juice for the kids, snacks and more. Josie had her St. Martin's celebration with her Kindergarten the next day. The pictures are on my parents' camera. Will try to get them soon. :-)

A spectacular sunset while driving on the Autobahn

They DO have internet here in Germany...

2009-11-16T09:46:00.002-06:00

...after all! We have had to wait forever, but we're finally back online!

We're all well. The kids are settling into their new routines and guess what??? We got our furniture already! Thankfully, my parents were here to help us out. The movers came on Friday and dropped off boxes after boxes...By now it almost looks like a real house! :-) The kids are overjoyed to have their toys and their own beds back. It does feel a lot more like home, now that our stuff is here.

There were a few cases of swine flu in Josie's kindergarten, but not in her group. So far the doctor said she can stay. We'll see what's going to happen with that. She got her flu shot (regular one, not H1N1) last Thursday and except for a low grade fever that night, she was fine.
Sam is due for his flu shot in half an hour. THAT will be a major problem, for that little fellow HATES needles and despite EMLA and all the bribes we can think of, it will be hard. I know that already. He is quite strong and last time it took 3 people to hold him so he could get a shot.

Josie's counts have been good. We're due for a spinal tab on Friday with Ara-C intrathecally, and Vincristine into her port. And yes...the dreaded steroid pulse will start once again.

More later, I have to get the kids ready for their appointment at their new local pediatrician. It's our first time there but I have heard a lot of good things about him. The funny thing is, that we can actually walk to him since it's right around the corner! :-)

THANKS for sticking with us throughout this long time without internet.

Offline...again...

2009-11-08T13:07:00.001-06:00

We will be offline again til probably next weekend or November 16th at the latest. So I won't be able to update the blog or check my email. So please bear with me until we're finally online for good. THANKS! Have a great week everyone! :-)

Swine Flu question

2009-11-06T13:25:00.002-06:00

We're starting to get a little scared about the swine flu. Apparently, it's starting to kill people here in Germany too. There is little known about the vaccine that they put on the market against H1N1. Josie's oncologist here in Germany is quite skeptical whether to use it or not. She wants to wait for more results to be published. But I feel like time's running out. If this thing spreads the way some people predict, we have a problem.

I know that a few people from Children's are reading this too. I'd like to know how this topic is handled at the Clinic? Are all ALL kids getting vaccinated against both, influenza and swine flu?
What do you do to protect your kids? Have you heard of any immuno compromised child catching the swine flu? What does the Clinic do when a child gets sick with the flu?
Sorry for my 5 million questions. That topic is just so new and I don't really know how to protect Josie best. Thanks in advance for your answers!

Thursday

2009-11-05T12:01:00.002-06:00

Josie's Clinic Visit went well. Her counts are really good, WBC 3.4! That's great, haven't had a good count like that in a while. Doctor was happy too.

Josie's Kindergarten called late this afternoon, telling us that a sibling of a child in Josie's group was diagnosed with the swine flu. We're keeping her home tomorrow and if the child is unsymptomatic on Monday, she is safe to go back, according to the doctor.

Thank you all...

2009-11-04T12:42:00.002-06:00

...for your patience and for the birthday wishes! Unfortunately we still don't have internet and today is the first time since my last entry that I am able to go online. We'll get internet on the 16th of November. I don't know why it takes them so long. I am very sorry that I couldn't write sooner, I know that many people are checking our blog daily.
I was overwhelmed to see the many birthday wishes! So thanks again! :-)

A quick update on the MRI: GREAT NEWS! They found absolutely NOTHING out of the ordinary! That's wonderful! Her bones are intact, no signs of AVN (necrosis) or anything. Now they'll keep watching her to see whether she has a neuropathy from the Vincristine. But these past few days have been much better, she hasn't complained of any pain. Let's hope it stays that way.

Kindergarten is going great for both kids. Josie and Sammy both have tons of fun and are making new friends. Josie has started her physical therapy and her therapist says she's doing great!

We have Clinic again tomorrow, we're very curious about her counts since they haven't been stable at all so far. We've had pretty low counts before she got back on steroids (that's when they skyrocketed to a WBC of over 10000). But before that, she was quite low and couldn't go to Kindergarten because of it.

My friend is letting us use her internet stick for the laptop again so I hope to be able to give you an update tomorrow. Thanks, Bianka! And best of luck for tomorrow! We're thinking about you guys and Joanna!

So thank you everyone for being patient and checking in on us! It means A LOT!!!

Weekend

2009-10-26T13:45:00.002-05:00

We had a nice weekend. The Laurentius Markt was going on in Ramstein. We walked out the door and around the corner and there were a bunch of booths and vendors selling food and nic nacs. Saturday we stopped by Gavin's Halloween party but Josie was in one of her steroid rage moods and we couldn't stay too long. Sammy was super happy though to play with the big kids.

As far as steroids go, it's the same thing as always. Josie has her moods but we're dealing with it. She still complains of pain but she's always had bone pains and aches while she was on steroids. We are giving her pain meds to help take the edge of it.

Thursday is the MRI of her legs and we'll check her counts. Hopefully they came back up. Friday, my sister and her family are planning to come here for Halloween and our birthday (we're twins, so yeah..."OUR" birthday). We're looking forward to having them over. Next Monday, Sam will finally start his Kindergarten and Josie hopefully resume hers. But we'll see. Things don't always work out the way we plan.

Friday and Clinic

2009-10-24T01:01:00.003-05:00

We went to the Clinic yesterday morning and they accessed Josie's port with no problem and administered her Vincristine.
The doctor discussed with us before that she wasn't sure whether Josie should receive more Vincristine that day. Josie's been having sharp pain in her left leg now (that comes and goes), she's been very restless at night and she was limping off and on. That didn't start til Wednesday night. Before, her right foot was the one that hurt, now it's her left leg also. Needless to say, but we're quite worried at this point. The doctor then decided to go ahead with the Vincristine since we all don't feel comfortable not giving her Chemotherapy without definite proof that she has a neuropathy from it.

Later that afternoon the doctor called me and informed me that Josie's counts had dropped quite a bit. Her WBC is at 1.4 now. She told me to stop all oral Chemotherapy but to still go ahead with the Prednisone. Next Thursday, Josie will have an MRI of both legs done to check for necrosis of the bones (which can happen during long term steroid therapy) and to see what's going on with the pain. We decided to give her ibuprofen, the doctor said it's safe now (we weren't allowed to give her that after she was diagnosed because of a bleeding risk) to make her more comfortable. I was also informed that they cannot do the nerve conducting test on a patient that still receives Vincristine, the results would be bad in any case. So as far as the neuropathy is concerned, they are trying to see whether there is any other reason that causes the pain (such as the necrosis) and then they will make a decision based upon clinical observation. She would have to show very severe symptoms though before they were to discontinue the Vincristine, that is what they told me.

Due to her low white count, Josie's not allowed to attend her therapeutic preschool this coming week. That's a real bummer. She had lots of fun there this week and now we'll have to start all over again with getting her used to it. On the other hand, she started steroids last night, who knows how she'll feel like this coming week. Probably not very social, is my guess.

Despite Josie's low counts we had our friends Will and Bianka over with their 2 kids. Josie is so happy whenever she gets to see her little friend Joanna (who is also 3) and Sammy plays really well with Gavin (he's 9), they're both Star Wars nuts. We had tons of fun and we're sooo glad that we already have friends here. It makes the biggest difference. :-)

The house is starting to feel like ours. We still don't have our furniture of course but still. I will try to take some pictures soon.

To any parents who have a child who's been on Vincristine...please write a note on this blog about your experience with Vincristine or AVN. You can also email me. THANKS!

In the House...

2009-10-22T04:37:00.003-05:00

Happy Reunion...big hug in the hotel room

Dressed up for Daddy

The first evening together...Daddy reading the story after 2 1/2 months

Sammy and Daddy

-----

We're all moved in for now. We are, however, having problems getting our home phones and internet working. According to Telekom, the guy can't make it to our house until the 30th of this month. He was supposed to be here today, but there was some kind of computer system mess up. They are trying to sort it out, but I don't know why a guy has to come to the house anyways. Don't they just flip a switch somewheres, and, bam! we have internet? I guess not.

I'm slowly inprocessing the base and I've already met my new coworkers. They are a different kind of hard-core here. A lot has changed at my job and on the base. For instance, I went to get VAT forms, which we use to purchase goods and services on the German economy for no sales tax (19%), and the building wasn't there! I had to stop a guy on the street to find it. VAT forms are a must have. Even with the exchange rate, you can get good stuff, especially electronics, at a good price.

We're still looking for a car for Heike. They usually have a lot of cars for sale on base at a car lot called "the Lemon Lot", but this time of year, not a lot of people are leaving Ramstein and selling their cars (because you can only ship one) and you can't ship Euro-Spec cars either. One can find lemon lots on any military base, and it's the same term used at all Air Force Bases. You can get brand new cars on base as well, and tax free too. We haven't decided what route to go yet, but we're still looking. Heike's mom has let us use her little Toyota, and I do mean little. My truck won't get here until the beginning of December at the latest. In the meantime, I've been riding Heike's bicycle to work. It only takes me about 15 minutes, but it made me realize how out of shape I've become in the last weeks.

Josie started her new kindergarten yesterday and she loves it! We'll see how it'll go while she's on steroids next week.

Thanks to our friends Bianka and Will we at least have internet. She gave us a stick that we put into the laptop and it connects us to the internet. Thanks for that and all the blankets, pillows, pots and pans you let us borrow! :-)

Off to the house and offline

2009-10-18T13:06:00.002-05:00

We are spending our last night in the hotel and tomorrow we will head to our new home. We are very glad to get out of the hotel, to have more room for the kids and a real kitchen to cook in. :-)

We won't have telephone or internet til at least Thursday, so the next blog update will be awhile.
Thanks for checking in on us!

Clinic news

2009-10-18T00:42:00.002-05:00

Josie had her first appointment at her new Oncology Clinic on Friday. We met the doctors, got to see the Clinic and Hospital and played in their playroom for a while. Everyone is super nice, the doctors are patientely answering all our questions and everyone seems to know how to handle a young patient like Josie.

The doctor from Augsburg had sent a package to Homburg University Medical Center, briefing them about Josie. She mentioned the recurring pain in Josie's right foot. That's something that started about 5 weeks ago. She'll be walking around or even sitting and all of a sudden, she'll scream in pain and grab her right foot. I then have to remove her shoe and sock completely and gently rub her little foot. These episodes come out of nowhere and last for a while. She tells me frequently that her legs but especially her right foot hurts. Anyways, Homburg is taking that quite seriously. They think it might be a neuropathy caused by the Vincristine. They said that they would like to do some tests, something like a nerve conducting test and a MRI of her leg/foot. If it is indeed a Vincristine induced Neuropathy then they want to stop the Vincristine immediately. They explained to us that the neuropathy could become worse (paralysis of the foot/leg) and they think that she's received a lot of Vincristine. The more Vincristine you get, the less likely it is for a neuropathy to reverse itself once you stop the medication.
We are quite concerned and next week (when she's scheduled for her next dose of Vincristine), we'll talk about when all these tests will be done.

Before I forget...the University Hospital's pharmacy is making a 6MP juice, that way we don't have to crush and mix the pills every night. It's much easier and you don't have to give a big quantity at all. I thought that might be interesting for the other parents who have little kids with ALL too. It's really odd how different everything is when you switch hospitals. Everyone does it differently.

Happy Reunion

2009-10-18T00:35:00.002-05:00

Finally we are together...Tim landed punctually on Wednesday, Oct. 15th at Ramstein Air Base and we picked him up. We drove to Ramstein with two cars, my parents with all our luggage in the big car, the kids and I and some more luggage in the small car. My parents stayed til Saturday but we're actually going to keep the small car until Tim's car gets here.

The reunion was somewhat buffered by us being seperated by a glass window. The kids were banging at the window screaming "daaaaadddyyyyy" at the top of their lungs, but we couldn't get to him until all the luggage came. I actually forgot to take the camera with me to the Terminal, so unfortunately there are no pictures of it. I have some pictures from these past couple of days though, which I will post shortly.

We are going to stay in the hotel for one more night and will move into our new house tomorrow. If anyone needs our new address, please email me and I will send it to you. We've actually been in the new house every day since we've been here. Our landlord is painting a couple of rooms and he asked us what colors we wanted on the walls. Him and his wife are very nice and we are getting along great. They'd actually already invited us over and we had a nice evening at their house while my parents watched over our sleeping kids. We're very excited to get into our new house.

Almost There...

2009-10-13T21:58:00.006-05:00

It's Tuesday night at the Embassy Suites in St. Louis, Missouri. The hotel is across the I-70 from the airport. The military set me up in a really nice hotel (for once...snicker*) with it's own little living room and separate bedroom. I drove in from Kansas City this afternoon after a tough goodbye with my dad. After checking in and loading my two large and heavy suitcases into the room, I proceeded to Pontoon Beach, Illinois to the St Louis Vehicle Processing Center (VPC), which is not in St. Louis. This is the same place that I picked up Heike's van back in February of 2007 and my truck will find it's way through the maze of the military vehicle shipping system all the way to Germany with an arrival date of no later than 2 December. I had to of course clean out the truck at a local do-it-yourself car cleaning place. I was amazed to find ancient french fries and other solidified and unidentified food items left there, no doubt, by Josie and/or Sammy at an unknown date and time. I guess, maybe, that I wasn't so suprised after all.

Well, processing of my truck was actually pretty quick and after a $50 cab ride, I found myself in the bathtub. After the bathtub, I found myself snoozing, and missing happy hour in the hotel lobby with free drinks for hotel guests, I found out later.

24 hours from now, I will be boarding the military charter airplane in Baltimore, which will take me directly into Ramstein. I can't wait to see Heike, Sammy and Josie. I know that I will be shocked to see how much the kids, especially Josie, have changed. It will probably be like the time I got back from Iraq in 2006 after not having seen Sammy for almost 5 months. He had changed so much, in fact, that I thought he may have been an imposter! He was talking up a storm too, which he wasn't talking hardly at all when I left for Iraq.

Anyway, here are some pictures from my visit to Children's Hospital last week.

Dr. Coulter was reluctant to take this picture, he's always been that way. Perhaps, with him being from Canada, he thinks it will steal his soul or something.

We will be forever grateful to everybody at Children's Hospital in Omaha. They made this time, the toughest time in our lives, a little easier. Josie always had fun on clinic days, even when she had to get poked with needles and be strapped to an IV pole a lot of the time. Thank you all! I say: give them all a raise!

On another note: I was going through my pictures and found a pretty good one from NCOA graduation.

The guy in the front with the bow tie was our instructor. I am really glad that I went. I had a lot of fun there and met some really interesting people. It also gave us the means to get to Florida to see Mickey Mouse and his crew in Orlando. You guys are awesome!!!

The next time we post an entry in this blog, we will all be together in Germany.

Until then!

5 more nights....

2009-10-10T01:32:00.002-05:00

"Mommy, how often do I have to sleep til daddy is here???" ...."5 more nights, Sammy!"...

It's so nice to see his big eyes light up in excitement. Both kids can't wait to see their daddy on Thursday. It's been 2 1/2 months since they've seen him.

I am very excited to move to Ramstein and start our new life there. I can't wait for all this "waiting" to be over with. Finally the kids will be able to be in a place where they will stay for a loooong time. Everything that we've worked for the past year will finally start this week. I don't know if this makes sense to our readers, but it makes sense to us. So needless to say, the excitement level is climbling!!!

...and I catch myself thinking at night "How often do I have to sleep until I see Tim again???"...I miss you, honey!

Thank you

2009-10-10T01:28:00.002-05:00

Thank you all for the birthday wishes for Josie! She was so happy and still talks about her birthday every day. She thinks it'd be nice to have a birthday more often. hahaha

Anyways, thanks for all the well wishes, cards and gifts! She loved every single one of it.

THANK YOU! DANKE!

Birthday pictures

2009-10-07T02:46:00.002-05:00

Princess for a day...Josie's biggest wish were fairy wings and voila...she insisted on wearing the princess dress by the way

Sammy, Josie and Lilly

In front of the birthday table, waiting for guests

Josie's special place

In the morning... I AM THREEEEEEEEEEEEEEEEEEEE!!!

Our baby girl is 3!!!

2009-10-06T00:36:00.002-05:00

Today is Josie's 3rd birthday! We are so thankful to have her and wish for many, many more happy years together as a family. She is such a sweet and beautiful little girl and being able to celebrate a birthday with her means the world to us...

Happy 3rd Birthday, baby girl! We love you so much!!! :-)

Weekend

2009-10-04T01:24:00.002-05:00

Tim flew to California yesterday to finally see his Grandparents and other family members there again. We never made it out there during our time in the States, mostly due to Josie's illness. We had tickets for a trip to L.A. for the week after Josie was diagnosed. I wish I could be there with him and I hope that they will have a great time together!!!

On another note...I heard that the swine flu reached Bellevue and Omaha. I hope that it won't get bad there. Take good care of yourselves, everyone! We miss our friends in Bellevue a lot. Josie asks about the Childhood Center and "Lukeeeee" every day and Sammy misses his friend Jack.

Have a great weekend everyone! :-)

Any readers left???

2009-10-02T13:00:00.002-05:00

Judging by the comments, there must be hardly any readers left in this blog. Hello??? Anybody out there??? It'd be great if you left a little comment every once in a while in our comment section. It's always nice to hear from our readers. :-)

A trip to the lake..."Ammersee"

2009-10-02T11:45:00.001-05:00

Throwing rocks into the water

A trip on a boat across the lake...the kids loved it!

Sammy, the captain

Oma and Josie awaiting our boat trip

A few pictures

2009-10-02T11:36:00.002-05:00

Josie's first ponytail since her hair grew back...she is so proud and wants to have one every day now!

Admiring her "jewelry" and hair clips

Oma and Sammy in a "Kettenschaukel" at a carnival

Our big boy

Princess Josie

Josie Video

2009-09-30T10:29:00.002-05:00

Here is an older video of Josie that I found. This was back in February of this year. Enjoy!

The wait and more

2009-09-30T00:34:00.002-05:00

About 2 more weeks and Tim will finally join us here in Germany. We can't wait to have him here and start our "new life" here in Ramstein. Everything is falling into place, we have a place to live, Sammy's new Kindergarten is waiting for him and Josie will start her therapeutic preschool with all the therapies she needs.

We are enjoying the beautiful fall weather and are spending as much time as possible outside. The kids are counting the days til Daddy comes and are excited about Josie's 3rd birthday next week as well. Josie keeps on saying that she's a big girl now. :-)

Josie is about to finish her steroid pulse for the month. I am more than happy about that, since she's just not herself while being on Prednisone. Her rash surely cleared up nicely but the doctor told me to expect it to come back worse after every steroid pulse. The Vincristine she received on Friday caused her quite some pain in her feet but it's getting better. Also, for the first time ever since she started treatment, she complained about her back hurting after the spinal tap. I have the feeling that she feels the effects of the Chemotherapy more, the older she gets. Maybe it's simply because she can express herself better now.

Getting Ready

2009-09-27T10:18:00.004-05:00

I have been working to get our stuff ready for shipping to Germany. For example: I spent a good 3 hours cleaning the BBQ grill. I also sold our minivan yesterday as well and we'll be doing the exchange tomorrow. I've also sold some other things too. The movers are coming this Wednesday and will be packing all of our stuff for 3 whole days.

I also got a camper shell for the truck since I won't be able to get one over there. I like it a lot because I can throw stuff in the back of the truck and not worry about it getting wet in bad weather or stolen since it is lockable.

I can't wait to get there. I miss Heike and the kids so very much and I count the days until I can see them again.

A few pictures

2009-09-25T11:04:00.002-05:00

Josie drew some pictures while we were in the hospital today... I am amazed, all of a sudden she draws faces and sticks for legs instead of "Kritzelkratzel" :-)

"My daddy" by Josie

A favorite activity on the hospital floor...IV pole surfing

In her bed

Josie and Joanna (Bianka and Will's 3 year old daughter) while dancing in their living-room. The girls had a great time together

A trip to Ramstein

2009-09-25T10:54:00.002-05:00

Josie and I travelled to Ramstein to look for a house and more importantly, to do the examinations for the Reha Kindergarten (therapeutical preschool) and do an orientation day. We stayed at our friends' house - Bianka and Will, thanks so much for having us! We had lots of fun!!!

We drove there on Tuesday, it took us almost 5 hours since traffic was rather heavy. But Josie did great in the car. Right when we got there, we looked at a house in Ramstein. It's VERY difficult to find a place in Ramstein itself right now, too many Americans, not enough houses. Anyways, the landlord told me that during the first 2 days that the house was listed, he had 70 phone calls. He showed it to 30 and 15 wanted to sign the contract right away. But he waited with his decision, since he promised to show it to me also. I didn't think that we had a chance but I really liked the house. It has 4 bedrooms, 2 bathrooms, a living room, a family room, a dining room, a built-in-kitchen, a big basement (with 6 rooms or so) and a nice backyard. Anyways, long story short...WE GOT IT!!! I signed the contract on Wednesday after talking to Tim and he sounds happy about it too. It's nice to know that we already have a place when Tim gets here.

The Reha Kindergarten was wonderful! The doctor examined Josie and confirmed that she should definately be in a therapeutic preschool. She's convinced that Josie will benefit tremendously there. Then we already spend 5 hours in a group, filling out all the administrative paper work but also seeing how Josie does when she's in a group situation like that. She did just fine! Ever since then she's been telling everyone that she's a "Kindergartenkind" now. :-)

We came back Thursday evening. This morning I had to take Josie to the hospital for a spinal tap with intrathecal Chemotherapy, a Vincristine push and labs. She did ok. She had a mild reaction to some opiate that she received and scratched her face. But it subsided and she was fine after a little while. Her counts went down, so they cranked down Chemotherapy for this week. Her WBC is 1.9, they try to keep it above 2.0 but under 3.0.

A week later

2009-09-18T06:55:00.002-05:00

Josie got a new winter hat, she picked it herself. That day she didn't want to take her new purple hat off at all. :-)

Josie and I made Sammy a "Schultuete". It's a German tradition that the kids who go to school for the first day in their lifes get a big "Schultuete". It's usually filled with candy and little gifts. A lot of kids get a smaller version when they start Kindergarten and since Sammy never got one, Josie and I made one for him and filled it with candy.

He also got a little exercise book with tasks for preschoolers in it (logical thinking, counting etc.). He loves it! Every day after Kindergarten he claims he needs to do homework. It's too cute!

I haven't posted in a while so here are some new pictures of the kids. Not that they have changed a lot in a week. :-) I still think that Tim will think that they changed quite a bit by the time he will get here and see them again. I am busy with looking for a house for us and next

week, Josie and I will drive to Ramstein to visit Josie's new therapeutic Kindergarten and do all the diagnostic tests that they want. We might be able to look at a couple of houses then also, but I am still waiting on phone calls about that. Also Josie will have her next spinal tap on Friday but this time we won't stay the night. I talked to the doctor and she said we could go if everything is fine. So that's good to know. I have spent too many nights in hospitals with Josie...

A few pictures

2009-09-12T05:27:00.003-05:00

Josie last night in her new PJs

The rash is quite obvious in these pictures

Sammy in his PJs

The hospital room that Josie was in when she had her Spinal Tap. The second bed was removed after the little girl got sent home who was in the room before Josie.

Josie in her bike seat on the back of my bike

Clinic Day

2009-09-11T08:16:00.002-05:00

Josie's counts are coming down. Her WBC went down to 2.4 which is good. It was a little too high last week.
The rash is spreading all over Josie's face, but it looks like we'll have to live with it for a long time unless it disappears by itself. That's doubtful though. The only thing we could do is use a steroid cream for her face and the doctor doesn't want to do that unless she starts scratching so bad that she breaks more skin. As long as it's "only" an annoyance and not pretty, they won't do anything but observe it. They are convinced that it's caused by the Purinethol aka Mercaptopurine. She'll get that til the end of treatment which is 14 October 2010.

The rash again...

2009-09-08T02:58:00.002-05:00

I don't know how well you can see the rash in this picture. Throughout the day it changes its brightness. Sometimes it's bright red, sometimes it's paler. This morning I went to the bakery with Josie to buy breakfast and I had 2 people ask about the "poor child's rash". I don't like it when people comment on things like that, maybe I am more sensitive about it since it's still very much in my head, how people stared and commented when Josie was bald.

The rash...

2009-09-07T00:31:00.002-05:00

...is popping up very aggressively and I might have to take Josie to the Clinic before Friday. She started scratching again and was bleeding underneath her left eye. That's really bad since she always has a higher risk for infections. I will get a special lotion at a pharmacy today and if that doesn't help, I will call the Clinic. They might want to prescribe some sort of steroid lotion.

On another note...I couldn't post pictures recently since I managed to either lose my camera or get it stolen. I don't know. Last time I remember having it, we were in the city with 50 000 other people for the parade. So no pictures for a little while, but I will try and take some with my parents' camera and post them here.

Past few days

2009-09-06T01:01:00.002-05:00

My parents took a short trip to Italy but they are back now. The kids and I have been going to the park, looking for Kastanien (chestnuts, I believe) since Sammy wants to do some crafts with them. Friday I took Josie to the Clinic and her counts are way high, which was to be expected since she just finished her steroids. Her HgB is through the roof too (14.1), I am not sure why that is. Since Friday Josie's face has been slightly puffy, first around the eyes, then her cheeks. Dr. Gnekow says it's due to the steroids and the high HgB. I am keeping an eye on it. She's been off steroids since Wednesday but her face is still slightly puffy this morning. Her Chemo was cranked up to lower the counts again. Other than that, she is feeling fine. She has complained of her feet hurting her quite a bit yesterday, I wonder if that might be caused by the MTX the night before?! I don't know. Also, unfortunately, her rash in her face is coming back. It has cleared up real nicely with the Prednisone but as soon as we stopped that on Wednesday, the rash started to come back. The doctors think it's due to the 6 MP which she gets every night. I am still not sure, since she has gotten that before and never had a reaction to it. But I am sure, they know better. There is nothing we can do about the rash is what they told me. She'll most likely have it til the end of treatment. They also told me that it might spread. I sure hope not. It hurts her sometimes and itches too.
Sammy has been doing great at Kindergarten! We already found a place for him in a wonderful Kindergarten in Ramstein village. Josie will go to the therapeutic Kindergarten at the REHA Landstuhl, right next to Ramstein Air Base. We'll be travelling there in a couple of weeks to look at everything, see the doctor there and they also wanted to meet Josie. As far as the transfer of medical care is concerned...Dr. Gnekow said she'll take care of it. She'd actually recommend Homburg, she knows the Oncologist there really well and thinks it's an excellent Clinic. So every thing is starting to fall into place. Tim will finish his school this week and can't wait to get back to Offutt to start organizing everything from his end.

Happy, Happy, HAAAAPPPPYYY!!!

2009-09-01T00:38:00.002-05:00

Finally...we received word that the Air Force has approved our request for relocation to Ramstein AFB!!! We are absolutely blown away. We heard a few days ago but I didn't want to post anything until Tim held something in writing in his hands.
It's amazing that this fight is finally over. We've worked very hard for this and we are very happy that we will all be reunited soon. Tim should be in Germany around the end of October. He's still very busy at school and he is getting really antsy, since there are many things he needs to do to prepare for the move and he can't do it from Florida. On my end here, I am already keeping an eye open for a house in Ramstein. Also, Josie's therapy place there is secure, I called them and they remembered me from our phone conversation months ago.

We are very thankful to everyone who helped us achieve this, at times seemingly impossible, goal. Dr. C., I don't know what you told that doc from AFPC but you worked a miracle. Thank you, Candlelighter's for telling me to contact Congressman Lee Terry. Lee Terry's staff managed to write a very powerful "congressional" and put it right onto the Sec. of the Air Force's desk! Thank you, DEAN!!!

Now we know that we have done everything in our power to help our daughter in the best possible way. We will miss Omaha and our friends in Bellevue. We will miss Grandpa and Grandma very much. We hope that we'll get to see all of you guys here in Germany someday or at the latest when we come back for a visit.

Back from the hospital

2009-08-29T08:41:00.002-05:00

The night was uneventful. We got released this morning after a doctor examined Josie once again. Everything is fine and we went into the city for the "Plaerrer Umzug" with the kids. The "Plaerrer" is a big carnival that comes into town twice a year. Today there was a huge parade with all kinds of people to see, music was playing and the kids got tons of candy that people were giving to them. I took pictures which I will post later.

I inquired more about the difference between the German and American leukemia protocol while I was at the hospital. The doctor explained that Josie wouldn`t receive any more lumbar punctures with intrathecal chemotherapy. Also she wouldn´t take anymore prednisone and wouldn´t get Vincristine either. All she´d take would be her 6MP daily, MTX once a week (just like we do) and her Bactrim. But they are keeping her on the Children´s Oncology Group protocol since she started it. That´s fine with me. I was just curious, that´s why I asked.