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.