Sebastian & Kaya

Kaya and Stefan also came over to visit us for a couple of hours. Kaya will start day care next week, so they probably won't be able to see each other much after that for some weeks due to risk or infection from other children, but we took the opportunity for Seb and Kaya to play today, and they really had fun - Sebastian wasn't even jealous over his cars.

Kim, if you're reading this, it's not my fault if Kaya got addicted to juice boxes! Talk to Stefan about that...haha.



I think Kaya may be ready for a little brother or sister?!?!?!

Sebastian's Day Out

Yesterday Sebastian's blood test showed he had an ANC (absolute neutrophile count) of 1.39. What does this mean? It means his immune system is good enough to go outside and play with (healthy) kids! So we went to Museums Quartier and met friends to sit outside and have breakfast. He got to play with two of his friends, Zoe and Lucas, as well as ride his trike and run around the complex. He had a great time.

Some have asked what size hat Sebastian is wearing now...his head is about 20 inches around, so if you are looking for a hat, this info may come in helpful.

Sebastian loves his DVDs! He likes to take out the cases and arrange them on the floor. Then he checks out each DVD cover and the ads inside. He usually comes over to me and then tells me which ones he wants us to buy for him.

You can see that Sebastian hasn't lost all of his hair, and that he still has his wonderfully long eyelashes (I wish I had them!). The next phase doesn't include drugs that really lead to hair loss, so he might grow some back before the final phase, which again will include drugs that do have hair loss as a side effect. Sebastian really doesn't notice (or care) that he has less hair.

We are really hoping that during this two week break that his blood counts will be good enough to allow him to go outside and play with some of his friends. I think he misses the social contact with other kids his age.

For those that like all the medical info, here are some of his values from the last blood test on Tuesday:

RBC (red blood cells) = 2.41 T/l (normal range 4-5.2)
Hemoglobin = 7.6 g/dl (normal range 11.1-14.3)
WBC (white blood cells) = 1.44 g/l (normal range 5-15)
Platelets = 458 g/l (normal range 150-450)
ANC (absolute neutrophile count - it should be over 1.00 if he is allowed to go outside and play) = 0.75 (normal range 1.5-8.1)

These values probably dropped the last couple of days because these were the results before he received the chemo on Tuesday. Hopefully on the weekend, the values will be back up again.

Have a nice weekend - Grandpa and Grandma from Nebraska are flying in on Sunday, so we are all excited.

Suz

We made it...

...through the first phase. Yesterday Sebastian received his last chemo dose for phase one (Cyclophosphamide, for all you drug buffs). It was a long day. The drug was only a one hour IV infusion, but he had to have 8 hours of saline afterwards to make sure his kidneys and bladder were flushed out. I guess this drug has been known to cause bladder irritation. He also received some blood since his red blood cell counts were too low.

Needless to say, he woke up with a lot of energy today!

Here are a couple of pictures of Stella - she will be 8 weeks this week!

Suzanne

Almost end of Induction

Hi everyone,

Well, we are approaching the end of Sebastian's chemotherapy phase (induction). The purpose of this first phase is to kill all the cancer cells, leading to remission. So far, all of Sebastian's tests have shown that he has already reached remission (this was two weeks after the beginning of treatment). Next Tuesday will be his last day of the induction phase, and then we will have a two week break.

After that, he will start the maintenance phase. This is to kill off any cancer cells that may still remain in the body. He will get a couple of new drugs. We will have to stay in the hospital then a few times overnight for infusions. This second phase will last approx. 8 weeks.

Sebastian is feeling extremely well! Michi and I find that he gets more energy everyday, and is in quite a good mood. This is surprising to us, since we heard so many stories about kids that just lay around all day, and are really tired and frustrated. Sebastian also eats quite well, considering that other kids hardly touch their food. At this point, I am not really concerned about what he eats, but how much he eats. I have heard that your sense of taste can change dramatically while on chemo drugs, so I make him whatever he asks for (within reason). We try to go outside once a day for a walk on his tricycle to exercise his muscles, since he lost a lot of muscle mass during the first four weeks of treatment.

Since Sebastian is such a happy kid right now, that really puts our minds at ease. There are days that are more demanding than others - it's always up and down - but having more good days than bad days is more than we can ask for. We are very thankful to have a strong support network, in terms of family, friends, and medical treatment.

I have to go to bed now - tomorrow is a long day at the clinic since Seb has to get another spinal tap (it stresses me out more than him I think) - so I have to be well rested at least for my own sake. Stella is sleeping at least one four hour block during the night, so I don't really feel like a walking zombie anymore, although I still long for an uninterrupted night of sleep. Suz

Happy Easter

Hi everyone,

I haven't sent any updates to Jenith, so I thought I should write an update myself. We have been home the last two weeks - no inpatient stays needed. We celebrated Easter at home. Sebastian is doing pretty well. He had a six day pause in the therapy because his blood tests showed a bit of liver stress, but it has recovered now, and he started the chemo again yesterday.

We are approaching the end of the first phase of the intensive treatment. In about 10 days, the first phase will end, and then there will be a 10-14 day break in chemo. The the next phase will start, which lasts 8 weeks. After this, there will be another 10-14 day break. Then finally (around the end of August) he will start the final intensive phase, which also last about 8 weeks. After these three intense phases are finished, the treatment will continue until Feb. 2009. But this will be low dose medicine, and Sebastian should be able to have a "normal" life, meaning he can go back to day care and do all the things he used to be able to do (take public transport, go shopping, the playground, etc).

During this intense phase, every time he gets sick, or has blood values that are not in range, he has to take breaks in the chemo. So if he is inpatient for two weeks and can't get the therapy, that means the whole process is delayed. It is quite common to have breaks and delays, so we try not to get worried when this happens. So far we have a total of 12 days delay, which I don't think is that bad. Every day we get closer to the end of the intense phase - I will be happy when it's over, although Sebastian is reacting very well.

Hope you all had a nice Easter holiday, and I will try to post more often when time permits. We are all a bit tired since we haven't been sleeping through the night (especially since Stella arrived). Suz

Hi!
I am very sorry that I have let so much time go by without any news. We haven't heard much new actually. Sebastian was back in the hospital last week because he was running a fever. They think it was a reaction to either medicine or a treatment (I'm not sure which), but wanted to make sure it wasn't an infection. His blood counts were also really low (white and red) so he was given some blood and put on antibiotics.

Sebastian is losing his hair. He still has some left, but it is getting very thin. On the bright side for Sebastian, he doesn't have to wash it anymore, so that makes him happy. I guess he is hating his baths right now!

Suzanne says that he is still in a good mood and is still himself. I am glad to hear that.

Thanks to all for your wonderfull support of Suzanne, Michi, Sebastian, and Stella.

Jenith