Back home

We were released on Wednesday afternoon, and started the last chemo block the same day. That means we are not really delayed in the treatment schedule despite Sebastian's fever this week.

Yesterday Sebastian had his last spinal tap of this phase, and of course, it was the worst so far. He gets really worked up before he gets the anaesthetic because it makes him feel sick and out of control before he falls asleep (well, this is what the doctor says). So he cries and tries to leave the room. It's a real stress. This time he threw up again after he got the sedative, and now his throat is irritated, so he can't talk. He had to get a lung x-ray today to make sure no mucous got in there, which could cause infection. Everything is ok at the moment. He is in a good mood, besides not being able to talk.

Tomorrow he gets the last chemo injection, and until next Thursday he has to take his nightly tablets, but then we are looking forward to the 10-week break which will start next Friday.

He loves the two younger doctors on staff (Dr. Engstler and Dr. Steiner) - they played soccer with him in the halls this week, and they are his favorite people at the moment (besides Miss Ducky and Bob the Builder, of course).

Fever's gone, but we are still inpatient

Sebastian had a low grade fever last night, but today was fever free. Still, he has to stay again tonight, and will probably get to come home tomorrow (Tuesday) if the fever stays away. His C-reactive protein (CRP) values are still high, so that shows his body is working off some infection somewhere. Therefore, he still got two doses of IV antibiotics today.

Sebastian is now chicken nugget free! He hasn't had them for two days straight! So the steroids are slowly getting out of his system. He is still pretty round, but it's going down too. The little hair that he grew back during the last phase is now falling out again. But it's not such a big shocker since there isn't much to lose.

Every Monday the Clown Doctors come and visit the patients, and today Sebastian got a yellow clown nose as a present. We all had to try the nose on, including Miss Ducky.

Photo by Sebastian.

Photo by Sebastian.

I bought a Bumbo chair for Stella (thanks for the tip Ashleigh), since she doesn't really like to lie down a lot anymore. She loves it!

Fever

Just a quick note that Sebastian spiked a fever today, and is inpatient. He is in a good mood, and so far the doctors have not found any signs of infection. In any case, he is on antibiotics for the next couple of days. If his blood cultures are ok, then he can come home tomorrow. The chemo medicine he got the last four days is known to cause "chemo fevers" - a side effect. Maybe this is what he has. If so, it should subside soon.

Will update more tomorrow or Monday.

Steroids are done

Sebastian had his last dose of steroids for this phase on Thursday. He is still asking for chicken nuggets, but only once a day now. He still looks like a moon, but things are starting to subside a bit. And he is a lot happier. We have been keeping busy at home with puzzles, drawing, cutting up paper, playing games and watching Bob the Builder.

Stella is growing so fast, and already is in 6-9 month clothes, although she is only 5 months now. She had carrots this week twice, and seemed to like them a bit. I haven't given her any solids the last two days because we were at the clinic, and somehow I can't get my days organized yet. I am sure we will be in more of a routine during the 10-week break that is coming up.

Stella - five months old.

Sitting, with a little help from the pillow.

Oops, starting to tip over....

and there she goes!

Tummy time.

Playing one of Sebastian's favorite board games - Quips!