Charlie & Johanna

Today our neighbors stopped by for a short visit since Sebastian's blood counts are good. Charlotte (Charlie) just turned three this month, and Johanna is two months younger than Stella.

Tomorrow we go in for Sebastian's next chemo treatment. He is on the steroids until Thursday this week. Even though his dosage has been reduced, I think he is eating even more now! I can even tell a difference in his face from last week's pictures and the ones below.

Johanna and Stella

Charlie and Sebastian

Stella had some more rice cereal today. She isn't a huge fan.
Mom, please feed me something with more taste!

Grandmama

Mom arrived safely last Saturday, and we spent the afternoon taking a walk down to the outdoor market to have some lunch. Throughout the week, she put in more than her share of cooking all of Sebastian's food cravings! Let's see...this week he ate mozzarella cheese, feta cheese, noodles, baguette, cheesy potatoes, and still the chicken nuggets. Except now, he didn't want the "normal ones" (the ones from the grocery store). He only wanted McDonald's chicken nuggets. Sebastian had way more than his yearly dose of McDonald's already this week alone!

Stella had her first taste of rice cereal, it wasn't the biggest hit, but she did pretty good swallowing it. I remember how Sebastian just spit everything out, but he was a few weeks younger when he first tried solids.

Ok, I am off to get out the first batch of chicken nuggets for the day (he woke up at 5:15 this morning hungry).

Return of the chicken nugget

I thought Sebastian was done with his chicken nugget addiction, but alas, it's BACK! I can't stand to look at the things anymore! I was up at 4:45 AM this morning because he wanted chicken nuggets and ketchup.

Yesterday we went to the park, and all he wanted to do was go home so he could eat. And he didn't stop talking about miso soup (he only eats the tofu bits) and sticky rice. So I ordered a delivery from the local japanese restaurant.

My mom is arriving tomorrow morning, and she will be in for a surprise after she sees the amount of food this guy can put away!

Stella's new favorite position - standing!

Hanging out at the Burggarten, trying to beat the heat.

Sebastian pondering the importance of chicken nuggets.

Miss Ducky had to take a nap too.

Goodbye chicken nuggets, hello feta cheese

Yes, the food cravings due to the steroids are starting to get stranger and stranger. The chicken nugget phase may be over. I hope so, because even I am getting grossed out making them three times a day. Today Sebastian wanted feta cheese and sticky rice (a.k.a. sushi rice). He was very excited when Michi got home with his stash, and dug right into the rice. I saw him drinking the soy sauce from the little plastic bottle that came from the take-out. He is still very lethargic and sleeps a lot. But the weather is unbearably hot this week in Vienna, so that might be bringing him down a bit too. Only two more days of hot weather and then it will cool off.

Stella is getting into her standing phase. She locks her legs and stretches out a lot, so it's hard to have her sit on your lap. She adores Sebastian and laughs at him all the time. She would much rather stare at him than me all day. Sometimes Sebastian will entertain her, but then he gets bored after ten minutes or so.

Yesterday Sebastian got vincristine and doxorubicin again. Everything went fine. His blood values were extremely good - almost all in "normal" range or very close to normal. This is a good sign - maybe we will get through this four week phase without any delays. He started the phase with such good values, I think it gave him a head start. But counts can drop really fast over a day or two, so I don't want to make too many predictions.

The camera is working again, but I didn't take any pictures today. No excuse, just too lazy. But I will tomorrow. Suz

Steroid boy

Yes, the side effects are starting to kick in a bit. Sebastian had chicken nuggets for breakfast, lunch and dinner. Throw in a little feta cheese, half a banana, and some whole grain corn flakes, and that was his food intake for the day. Oh, I forgot the zwieback/melba toast thingies. He had a few of those too.

Didn't want ice cream, juice, actually nothing really that sweet.

And he is really tired. He asked to go to bed tonight. That was after a LONG nap today. We took a drive outside the city because it's so hot, we can't do much else. He asked to go home after about 20 minutes. Normally he loves riding in the car. He just doesn't feel himself today.

At least he doesn't have a fever (knock on wood). He has developed a fever everytime after the start of a new phase. I keep feeling his head and taking his temperature expecting that it will creep up on us any minute. Not so far.

I realized yesterday that Stella is 20 weeks old now. I keep thinking she is like a newborn or three-month old - where does the time go? I have to start thinking about feeding her baby cereal in the next weeks, and then psyche myself up for all the great organic baby food I will be making and FREEZING in my great new, kick-butt freezer!!! I will say it again, I love that refrigerator/freezer - just for the chicken nugget holding capacity alone!

Digital camera is not working again for some reason. It may have just bit the dust. If not, pictures to follow...

Infusion went ok

Just an update that Sebastian's infusion of the new asparaginase went just fine. He did receive the PEG-Asparaginase. Since this form of the drug has a longer working effect, he doesn't have to have it anymore during this four week phase. That means we go in again next Tuesday instead of this Friday as originally planned.

His blood count values Wed morning were almost in normal range!!! But they will drop off any day now because of the drugs he received this week. He has shown a bit of mood swings due to the steroids, and today asked for an egg - something he rarely eats a lot of. But no out of the ordinary requests yet. He took almost a four hour nap today! I wish Stella would have done the same. :-)

Another "first"

Update on Sebastian's first day of the "delayed intensification" phase. DI is a short, but very intense, phase of chemo. It is like the first weeks of his treatment, but only half as long.

This is the first DI phase of two he will go through. The second DI will be around Nov/Dec 2007. Some studies show that two DI phases after remission is reached have better survival rates (see a medical abstract here).

Sebastian received four drugs today:
1. Dexamethasone (a steroid, tablets that he will take 3 times a day)
2. Vincristine (injected into his catheter, this one can cause the walking problems and leg pain again)
3. Doxorubicin (one hour IV drip)
4. Asparaginase (one hour IV drip)

If you would like to test your German and see how often he has to get these drugs over the next two weeks, click here to download the protocol.

In addition to these drugs, he still gets:
- two other medicines that prevent fungal infection ("ampho") and amoeba infections ("humatin")
- an antibiotic to prevent a type of pneumonia in the lungs, and
- a medicine like Zantac to protect his stomach from the steroid.

He hates the last one because it is a white paste that tastes really gross. I know - I have tried it. I try to hide it in yogurt, but I am sure that trick won't last for long.

Sebastian also had another bone marrow aspiration (BMA) today. They already checked to see if there were cancer cells in the marrow - and there are NONE (as expected)! The sample will now be sent for more sensitive tests (called MRD), and will take a couple of weeks.

I personally don't know which drug I hate the most out of the four, because they each have crappy side effects. I know I shouldn't HATE them, because they are what make Sebastian healthy again, but I do hate the side effects. ASP caused really bad diarrhea and stomach cramps, vincristine made his legs hurt and he couldn't walk for a couple of weeks, and steroids - I think I have mentioned that MANY times before.

Sebastian had to have an anaesthetic for the BMA, and freaked out again. He hates the sensation of falling asleep. I was not there this time, Michi had this one. I just don't deal with it that well anymore, so I gladly give that task to Michi. They tried to give him a seditive before he went into the treatment room, but he wouldn't take it, so he was already worked up when he went into the room. But everything went ok after he was asleep, and he didn't have any complications from the anaesthetic. I arrived right as he was waking up, and then the other drugs were administered.

He handled the VCR and DOX drugs fine. But he had problems with the ASP. The more this drug is used, the more likely one gets an allergic reaction. The doctors know this, so they monitor the patients very closely. Sebastian didn't have any problems with this drug during the first phase of treatment. But this time he started to cough and get a red face after a few minutes. So he had to receive a cortisone injection and some other stuff (which I didn't ask the names of because I was too stressed out - one was something to inhale). He probably had the senstation that his throat was closing on him, but he didn't articulate this. He just cried, and it took him about 20 minutes to calm down afterwards.

So he won't be getting this form of ASP anymore (which is E.Coli based). Tomorrow we have to go back to try another form of ASP (I think it's called PEG-ASP, which is used more commonly in the states), and if he also reacts badly to this one, then there is one more kind to try (I think it's made from Erwinia). I HOPE that he doesn't have another allergic reaction tomorrow. And I also HOPE that he won't be scared every time he has to be hooked up to an IV now.

I am waiting for the steroid mood changes to kick in. Let's see how many nights he can go without two midnight snacks of noodles and rice. For the moment, he is sleeping like a little angel. He didn't even put up a fight tonight, and was asleep by 7:15 (that is pretty rare). And little Stella was already asleep at 7:00; she was tired out too. I am off to take a hot bath.

More tomorrow...Suz

Enjoying the summer

We enjoyed the nice weather this weekend with a walk, bike ride, and ice cream!

Sebastian likes popsicles, but we always have to scrape off the chocolate coating before he eats it!

Sebastian is very proud of his bike.





Wiggly kids - they don't like to sit still for photos. Sebastian is trying to get the camera from Michi. Stella looks on and thinks he's pretty entertaining.

Sebastian was REALLY happy to get his picture taken.

Stella rolls over

First of all, I am WAY behind on emails, so please don't think I have forgotten you all! I just have a ton in my inbox to reply to, and I am slowly working through them.

Big news of the week: Stella rolled over on her own. Only problem is that she can't roll back, so she gets stuck on her tummy and gets really upset.

Stella stuck in her favorite new position.

She smiles all the time too. See the video:



Sebastian is doing just fine. His infection fighting cells are a bit low, so we have to stay around home, but he feels fine and has a lot of energy. Tuesday the new phase starts, and I am already a bit worried (steroids again), but I will write more about that later. Today Michi came home with lots of frozen pizzas and chicken nuggets so that when a steroid food craving hits, we are prepared. We have tons of savoury carbs stashed - quite the opposite of all the vegetables we have been eating lately. I will probably gain 10 pounds myself just nibbling off Sebastian's food.

Our new fridge is like George Clooney - I could just sit and stare at it all day!

Happy 4th!

Sebastian on the Fourth of July - 2004 and 2007.

Although we aren't really celebrating it here today, but I am still thinking of you all back in the States on the big 4th of July holiday! In Vienna it is cold and rainy, and for most of you back home, I am sure you are having lots of yummy food and BBQing, not to mention the fun fireworks and sparklers.



Sebastian is now on his chemo break in between phases. We were supposed to have a two week break, but instead they shortened it to one week since his blood values are good. They think his body is ready for the next phase. Fine with me, because a week early now means a week early ending in the long run.

So next Tuesday he will get some chemo infusions and will start the steroids pills again. Here come the severe mood swings and food cravings. So, I am happy to say that we got a new refrigerator (not just for this reason), but because we need one anyway. For those of you who have seen our kitchen, the one that came with the apartment is teeny tiny - it is like a small dorm room fridge! Now that I am home with the kids all day and always cook, I needed something bigger. I cannot say how much I LOVE LOVE LOVE it. So much space... Michi of course was a little hesitant about the whole purchase because he just breaks out in a sweat thinking of buying major appliances, but I am sure he will grow to love it, especially when it's hot and there will be more than just two cold beers in the fridge waiting for him when he gets home from work.

Stella has slept through the night three times in the last week (from 8 PM to 5 AM), so that is a big step forward for me. She falls asleep pretty well on her own without any soothing, so once again, we are really lucky to have an "easy" baby.

Stella spent most of her 4th of July taking naps - must be the cold, rainy weather.