Still stuck at home

Hi all,

Sebastian's values are still quite low, so we are restricted at home until the next test. It's getting really hard to be at home, but I think I have written that tons of times! We know next year and next Xmas will be better, but sometimes the days drone on waiting for the doctor's ok to go back to the normal life.

The goods news is that Sebastian gets his chest catheter removed next Wednesday on Jan. 2nd. It should be an outpatient procedure, but maybe he will have to spend the night for observation. It's a minor surgery, but I am still a bit nervous. They will probably have to give him an I.V. before the procedure, which will scare him, but he also knows that after his "cables" are removed he can go swimming again and splash around in the bath all he wants. From now on, he will get finger pokes for the blood tests.

Michi is out with the kids on a walk, and I am cooking lots of (adult and baby) food to freeze for the next weeks. After I go back to work, I will need to save as much time as possible. So, back to the kitchen!

Merry Christmas

Our attempts at a family picture - we could not get Stella to look at the camera!

Making Christmas cookies.

The standing Rudolph the Red Nose Reindeer cookie.


Christmas Greetings from Vienna! We have already celebrated with the first round of gifts, ate dinner, watched Christmas Vacation (long live the Griswolds) and put the kids to bed.

I made Tafelspitz tonight - a typical Austrian dish. We made and decorated Christmas cookies today. Sebastian and Stella opened some gifts (the ones from family members; Santa and the Christkind still come tonight). Stella got some clothes (she was more interested in eating the wrapping paper), and Sebastian got Benny from Bob the Builder, a Playmobil four-wheeler toy, a couple of DVDs, and a Candyland game (which we already played too).

We put some cookies out for Santa Claus and the Christkind, and Sebastian left all his "Schnuller" (a.k.a. pacifiers) since he is trading them in for some gifts and is on his way to being a "big boy" - I so hope it works. He was (or is) really addicted to them, and it was just too hard for us to take it away this year with all he's been through.

I will update more tomorrow, but I just wanted to say hi to everyone at home in the States and around the world!

We finished!

On Saturday Sebastian got his last intense chemo treatment, so we are officially finished with the "hard" phase. Almost 10 months - wow, it's a relief. And he sailed through these past weeks with no illness or fever.

So now all he has to do is relax and let his body recover. Our next appointment is this Friday, and they will do a blood test to see how his values are. We are assuming that we will still be "quarantined" until after Christmas. Last time it took him three weeks to get his body back to a healthy state.

The last days have been quite draining. Sebastian is very hyperactive, doesn't sleep much, and is very stubborn about everything. I don't think this is a case of feeling good and being locked inside; I really feel this is a side effect of the medicine, or just being completely frustrated after all these months of medicine and restrictions. I think we will all be glad that the holidays are here, and that hopefully after the new year life can go back to normal. Sebastian needs to get out and play with his friends and children his age. He is so over being at home with mom and baby sister all the time, and honestly, I think I am over it too. We need outside entertainment. Thank goodness for Santa Claus' visit next week!

Day 25 of 28

Today Sebastian has been running around the house singing "Christmas in Killarney" over and over again (don't ask me how I got the Irish Rovers on my mp3 playlist). He keeps telling me that he wants to GO to Killarney. I asked him, "Do you know where Killarney is?" No. "It's in Ireland." What's that. "That's an island far away from here" Can we drive there? "No, we would have to drive or take the train, and then a boat. Or we would have to fly." Now he REALLY wants to go there.

I am SO happy to say that we started the last chemo block yesterday. Without fever, without low counts giving us a delay, and without Sebastian freaking out too much over the anaesthesia today! On Saturday he should receive the last intensive chemo shot, and then he will have the next two weeks to recover. If all goes well, his vein catheter will be removed in January, and we can enjoy the start of Long-Term Maintenance. He has been in a really good mood; I think it's the excitement of Christmas that is lifting his spirits.

Stella is a little cranky lately - where is that darn tooth???

Sebastian's "car" - sitting in Stella's Bumbo chair and inside the frame to her bouncy seat.

Day 22 of 28

We made it through the first block of ARA-C chemo, and no fever! Knock on wood. If we can get through this week without a delay, it would be such a relief. I don't want to jinx our luck, so I won't write anymore about that.

Sebastian's hair is thinning out again. He leaves a trail everywhere he goes. He is in good spirits, but he has been a little wound up lately. And doesn't really want to listen to me at all. He says "No" to everything, even before I finish a sentance. Now he wants to have a bunk bed, but I told him we wouldn't consider that until he starts sleeping in his room the WHOLE night. He usually gets up in the middle of the night and wanders into our bed.

Stella is moving around a bit, almost like a crawl, but not quite. She is also in the screaming phase again - screams at everything. It's like a little siren goes off every five minutes at home.

Pork chops, potatoes and parsnips for lunch (and ketchup, of course).

Day 18 of 28

On Monday Sebastian's blood values were really good, so he received the infusion. And yesterday, his values were still good, so we started the first of two 4-days "blocks" of chemo.

Yesterday Sebastian had the seditive (which he usually hates, but didn't freak out that much this time) for his spinal tap. Everything went fine, and he got an injection of Ara-C. He gets these injections four days in a row.

Today he received the second injection. Since he stopped the steoids last Saturday, he is less hungry and less moody. Unfortunately the hair that grew back the last three months is falling out again. He could care less, but I have to get the lint roller out again! It will be everywhere.

In the past, he has always got a fever after this first block of chemo, so we are hoping that we can get through the last 10 days without being inpatient. Let's see. If he gets a fever, it will probably start on Sunday. In any case, we are happy that we went forward with the therapy this week.

Last night Nicki and Kim babysat for us (finally redeeming my birthday "coupon" present from this summer!). Michi and I went to a book reading by Ian Rankin, a Scottish crime novelist; it was our first. It was quite interesting, and afterwards I got my book autographed. I felt like a giddy teenager, and wanted to tell him how much I enjoyed these books the last months during all the waiting in the hospital, for clinic visits, and during sleepless nights. But I didn't, my nerves got to me!

Gotta go, Stella is starting to get fussy. I am sure it's that tooth that will break through any day now....or maybe not.

Sebastian's big tummy - a side effect of the steroids. He has only been wearing his "expando-belly" pants the last two weeks.

Miss Ducky - Sebastian's closest friend and advisor.

Stella at 9 months old.
All packed up and ready to go outside.

Day 14 of 28...still

Another delay...we were told we would have to wait until Monday to check the blood levels again. If they are ok, then Sebastian can continue with the therapy. His white cells were in range yesterday, but his neutrophiles (a special kind of white cell that fights infection) were too low, but only by a little bit! They were at 980, and they need to be above 1000.

We can rule out that Sebastian will be able to go back to pre-school in December now, and we are hoping he can go back on Jan. 2nd. He is already asking to go back to "kindergarten", and that he's already waited so long! At least Christmas will offer him some entertainment.

Stella is trying to pull herself up in the playpen; she hasn't succeeded yet, but is close. Still no tooth!

Day 14 of 28

We had our clinic appointment yesterday. Everything was ok, Sebastian is fine, but his white blood cells are a bit too low for him to have received the chemo, so we have a delay. The chemo will make his counts drop pretty fast, so they want a "buffer" amount of white/red cells and platelets before they go ahead with the infusion. So I will keep writing "Day 14 of 28" until we have the go-ahead to continue on to the Day 15 protocol.

Thankfully, we have started the first reduction in doseage of steroids. Sebastian is eating ALL the time and is moodier than last week. He is soooooo puffy, and waddles around like a very pregnant woman with a huge stomach. I hope by the end of this week, those side effects will start to go away a bit. He wakes up in the night to eat, at least twice. Sometimes we have popcorn or crackers next to his bed so he will eat, and then go back to sleep on his own without waking anyone up. Michi's mom was here the past four days, and she was a great help. She was cooking rice, spaghetti, whatever the little guy wanted - and at all hours of the night.

Still waiting for Stella's first tooth!!!

The demise of our snowman.


Before going on our walk outside today.

Turkey Day

I just got on the Yahoo homepage, and realized it was Thanksgiving! I can't believe I forgot. All my friends and family will be eating turkey today, maybe some pumpkin pie, and gettting ready for a big shopping day tomorrow. Hi all!

Not much else to report here. Yesterday we had to make an emergency sushi run because Sebastian HAD to have cucumber maki. It was pretty cold outside, but we took a walk. I pushed Stella in her stroller, and Sebastian pushed Miss Ducky in his little stroller. Today Sebastian said he wants a birthday cake - maybe I will bake something and we can pretend it's Miss Ducky's birthday.

Day 9 of 28

Yesterday Sebastian went to the clinic for another day of infusions. His blood counts were fine, actually quite high considering his chemo from last week. Yesterday he received doxorubicin and vincristine, and he continues to take the steroids. Everything went fine, he is just a bit tired like usual, and the food cravings continue. For breakfast he had chicken nuggets, toast with jam, hot chocolate, popcorn and wanted scrambled eggs, but I talked him out of that one.

The next clinic appointment is next Monday. Until then we continue to be stuck at home, trying our best to keep entertained and keep our sanity! :-)

Day 7 of 28

Not much to report here. Sebastian's food cravings dominate our day, and today Michi made a run to the movie theater around the corner because he wanted popcorn. Yesterday he said he wanted to eat salt. I said he couldn't eat just salt - that it's unhealthy. He said then he wanted to put salt on "something" and then eat it. So in the end I gave him a piece of bread, he sprinkled salt on it, ate half of it, and then turned up his nose and said it tasted gross.

Tomorrow is our next clinic appointment. I am interested to see how his blood values are, and if they took a big dip from last week's chemotherapy.

The snowman on our terrasse.

Stella is getting a bit tired of sitting in the snow.

Day 5 of 28

Today we woke up to lots of snow! And it's still snowing. We will try to make a snowman on our terrasse today.
Sebastian had some weird cravings for breakfast. Notice the roll with Nutella (it's a chocolate/hazelnut spread) and a slice of cheese on top!

Day 4 of 28

Not much to report. Sebastian slept a lot more than normal, and was quite pleasant today. No roid rage outbursts. Stella, on the other hand, was a little whiney. And feeding her is becoming quite an ordeal. She likes to bat the food off the spoon, and is distracted by everything around her. It takes FOREVER for her to eat her lunch.

Guess what we had for dinner? Chicken nuggets! Yuck, I am already grossed out by them.

Day 3 of 28

Check another day off. Sebastian is taking his medicine a bit better now. The worst is at night when he is tired, and just doesn't want to bother with anything. He had noodles again at night, but he only wants to eat the tri-colored "butterfly" noodles. He also wants tofu (he likes it in miso soup), so let's see if I can make it taste just like the Japanese restaurant here around the corner.

Day 2 of 28

Not much happened on Day 2. Sebastian started asking for noodles and cheese. He is a bit tired, has some grey circles under his eyes, and had a couple of toy kicking episodes (aggression from the steroids), but in general he is in good spirits.

He doesn't like to take the medicine that protects his stomach (called Ulcogant, it's like liquid Zantec), and it made him throw up yesterday. I think he mentally psyches himself out that it tastes bad. Well, we had to find a way around that, because he has to take it three times a day. I started letting him pick out food coloring to make it different colors, and so far that has worked. (Thanks for the tip, Kim).

Day 1 of 28

We started our last block of intensive chemotherapy yesterday. Everything went fine. Sebastian received an injection of Vincristine, a one-hour infusion of PEG Asperaginase (luckily with no allergic reaction), and a one-hour infusion of Doxorubicin. He also started taking the infamous steroid tablets again. We will soon welcome the moody chicken nugget monster into our house. The freezer is stocked and ready.

We are all anxious to get through this last chemo block. We are taking it day by day, with the mindset that each day we are closer to the end. Hopefully Christmas will be a time to recover, and then the new year can start with fun kindergarten and me going back to work a bit.

Here are some pictures of the last week. I'll probably be posting more since we will be at home the next four weeks, more or less. Thanks to everyone for the nice emails and well wishes!

Sebastian in the Burgarten last weekend.


Sebastian and Kaya.

Sebastian and his homemade tool belt - all you need is a little bit of masking tape!

The first snow of the season - it already melted the same afternoon.

Stella...working on those teeth. We're still waiting for the first one to surface!

How low can she go?

Happy Halloween

The fun stopped here - Stella crying - and Sebastian's reaction to cover his ears.

Weekend in Budapest

Sebastian has been doing really well. We have been trying to take full advantage of the days during this chemo break - we have met up with lots of people and go out every weekend. Last weekend we went to Budapest to visit friends of ours, Alberto and Bernadett. Here are some pictures. Sebastian running around in Budapest.

On the train up the hill to the Castle District on the Buda side.

Sebastian, Betty, Alberto, and Stella (sleeping of course).

Sebastian and I overlooking the Danube - he wasn't too excited about pictures at this point.

Sebastian starts his next, and final, intensive chemo round on Nov. 12th. As of Nov. 5th we have to be careful of germs again - meaning no day care, no stores, etc etc. Just like before. The doctors want to minimize his chances of catching any bugs before he starts therapy. So far, we have been really lucky, he didn't get sick at all over the last weeks - just some common colds and sniffles.

Stella is sitting now, but still no teeth. She is a happy baby, with the occasional "mama's girl" outbursts. Her favorite words now are ba-ba-ba and ga-ga-ga.

Zoo

Just some pictures from our trip to the zoo last weekend. Nothing new here, we are all doing well. Sebastian's next blood tests and check up are on Monday, so I will post more after that.