Tired

We have been pretty exhausted after being in the hospital this week. I have not really talked or emailed anyone, so I will have to start up again on the weekend.

We check in again on Monday night, and I hope not one minute earlier. Sebastian's mouth is much better, and he doesn't complain of any pain while eating and when we have to clean it. But last night he started getting a runny nose and is coughing every now and then. Let's just hope that doesn't turn into anything.

It is so warm in the city, that Stella slept most of the day yesterday, and when she was awake, she was grumpy. I hope it's not a scorcher of a summer.

We are still patiently waiting for Sebastian's last bone marrow results. They sent the sample to the lab in Germany, where they do a very exact test called MRD (minimal residual disease). The results of this test, along with the previous values from other similar tests, will determine which treatment arm he follows. I SO hope that he can follow the standard risk arm, because then he would be finished around the end of September with the entire intensive treatment.

We are home again

We were allowed to come home last night since Sebastian wasn't running a fever for a couple of days, and he could eat and drink on his own without needing any painkillers for his mouth sores.

We were SO glad to get out of there, because next week we have to go in again for the bi-weekly therapy. After awhile you go a little weird-o after being cooped up in there. At least I do. After they unhooked Sebastian from his IV, he ran around the ward three times out of excitement.

It's really quite hot in Vienna this week, so it's good to sleep in our own comfortable beds. Here are some pictures I took of the kids tonight after they fell asleep. I was messing around with the flash and night options on the camera. And yes, you can see that Sebastian still has his "schnuller" at night - I don't have the heart or the patience to get rid of it right now.

It's amazing they could sleep at all with the sound of helicopters flying over the city because Putin was in town yesterday, and Bill Clinton is visiting today.

Back in the Big House

Hi all,

Well, Sebastian was discharged after his methotrexate (MTX) therapy on Thursday night. He responded very well, and there were no complications. We had to wait until 10 PM to get the go ahead to be released, but we were all really happy to wake up in our own beds on Friday morning.

The nurse warned us that the next days would be the start of the MTX side effects, which include fatigue, skin rashes, loss of appetite and/or mouth sores.

Last night Sebastian woke up twice crying because he said his mouth hurt. He had already complained earlier in the day that orange juice hurt his mouth. And then this morning he would not eat, and barely drink. Throughout the day, his temperature rose, and then he started to get a rash on the back of his neck and arms.

So we called the hospital, and they said to come in. Which is fine with me, because if he even has a slight fever, I prefer that he is in the hospital and is being monitored. He vomited in the car on the way there, and felt really upset about that. He pretty much vomited up the only thing he drank today, which was some milk.

So now I am writing this post from the hospital, and Sebastian is already in his room watching Bob the Builder. He has been hooked up to the IV for fluids, and is getting some medicine for the mouth and throat pain. He didn't have a high enough temperature to start antibiotics, but they will keep checking on that.

I can't add any pictures because they are all on the computer at home, but I will try to do that later tonight. Michi will stay over tonight, and I will take the day shift tomorrow again.

Suz

In-Patient

After a great time with Grandpa (a.k.a. Ponca) and Grandma from Nebraska, life returned back to its normal routine this week.

Tonight Sebastian was admitted for the next chemo treatment, which will start tomorrow. He will be hooked up to an IV to flush fluids through him, and the chemo treatment will begin tomorrow. It involves high dose methotrexate through the IV, and intrathecal methotrexate (injected into the spine) administered tomorrow. The earliest we will get out of the hospital is Thursday, but it could last up to Saturday. The reason we have to stay inpatient is because Sebastian needs to receive lots of fluids to make sure the drug is "flushed" out. This inpatient stay is normal routine, and will happen every other week over the next 8 weeks.

I dropped Michi and Sebastian off at the hospital tonight, and came home with Stella. Tomorrow I will go in to be in the hospital the whole day so Michi can go to work, and then we will switch "shifts" again. Michi's mom will also come to Vienna tomorrow night to help out, and to stay some time in the hospital so Michi and I can go out for our anniversary on Wednesday - four years and still going strong!

Sebastian is doing quite well, is in good spirits, and has no noticeable side effects right now, except the normal low resistance to infection as seen in his blood counts. Let's hope that the next phase will not be as hard on him as the first four weeks.

Here are some pictures from the last week.

Marrow Drive - REGISTER NOW FOR FREE

We are so very thankful that the chance that Sebastian will need a bone marrow or stem cell transplant are very small.

But there are many other children living with cancer, and leukemia in particular, that are not so lucky. We have met families here that have been looking for months and years for donor matches for their children's much needed transplants. Sometimes siblings and other family members are not a match, so doctors search the marrow registry for other matches.

I am asking you to think about joining your national marrow registry. It usually costs around $50 or 50 EUR to do this - it involves a swab test of your inside cheek or a finger prick.

In the USA, there is a marrow drive - so you can join for FREE! For friends in Nebraska, I think the local drives are taking place in Omaha and Gretna this week! You can click here for more details and locations around the states:
http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html

For friends in Austria, here is the local link:
http://www.stammzellspende.at/

I also have some friends in the states who are pregnant now. If you have not thought about banking your child's cord blood, please do so. And if you choose not to do this for yourself, I urge you to consider donating your cord blood to the national cord bank for other children in need. As opposed to banking cord blood for your own use, which can be quite expensive, DONATING it is free. Here is a link with more information:
http://www.marrow.org/HELP/Donate_Babys_Umbilical_CB/index.html

Home Bound Again

On May 2nd Sebastian had his weekly blood test again during the break, and his counts had fallen quite low. The doctors were not concerned since it is due to a residual effect of his last chemo treatment. But it means he has to stay home most of the time and avoid crowds due to the risk of infection. After hearing this, I was worried that we had taken him out the day before, so I am patiently waiting and hoping that he doesn't get a fever over the next week. So far, so good - he is fine and he doesn't seem like he is getting sick at all. Maybe I am just worrying too much. I have to remember how much fun he had the last weekend having some "normal" days and being able to play with kids again, even if it was only for a few hours.

Sebastian and Grandpa reading Get Well cards from kids at the school in Des Moines where Aunt Jenith works.

May 1st Holiday

We had another outing - this time to the "Weingut am Reisenbergweg" (a local wine place) with the grandparents.