Friday, June 15, 2007

Got the test results back

We finished the third block of MTX infusion this week (MTX is methotrexate, you can read more info at this link). Michi's mom was here to help, which was great, because it gets harder and harder for him to stay in the hospital. He gets really bored and annoyed with his IV, i.e. he can't ride around on the trikes as fast as he wants to! Also, the bi-weekly spinal taps are really a bummer. He hates getting the sedative (he already recognizes the medicine in the syringe), and screams that he doesn't want to sleep. We tried it this week with just a numbing cream (Emla), and it went so well until the end, when he turned around and saw the needle. Needless to say, he got the sedative after that. I'm so glad we only have one more MTX infusion to go, and then a two week break.

Even more important is that we got his MRD test results back. These results put us into the low/standard risk or the middle risk treatment group. You can read more about MRD testing by clicking here - it is basically a test that doctors have been using for about 10 years that is very sensitive and can detect cancer cells better than previous methods. When doctors say a leukemia patient is in remission, it means less than 5% of blasts (the BAD cancer cells) in the blood or bone marrow sample. But in reality, there still could be some of those buggers hiding in the body. So this MRD testing can find them. Maybe one of the reasons people in the past relapsed after normal treatment is because there were still some cancer cells in the body. This test aims to categorize patients into treatment categories - the ones that don't need aggressive treatment are put on milder therapies and vice versa for higher risk patients.

In order for Sebastian to be put into the mildest treatment track, he had to have a negative MRD testing value on day 33 and day 77 after the start of his treatment (which was on Feb 11, 2007). He had a very small amount on day 33, and a negative result on day 77. So that means we are in the intermediate treatment group. BUT THIS IS NOT BAD NEWS. I want to stress that - it is very "normal" and still positive that he had these results. So please don't worry; we aren't.

What does that mean for us? After the two week break coming up, Sebastian will have four weeks of intense chemo with the same kind of drugs he received at the beginning. (For those of you who want to brush up on your German AND medical knowledge, you can download a copy of the 4-week protocol here). Then he will have a 10 WEEK break, only having to take some pills at home. Then this four week chemo treatment will happen again. After this all, he will start the long term maintenance therapy, which is basically taking medicine at home until his 5th birthday.

If he had been put into the standard/low risk category, he would have completed 8 weeks of chemo treatment starting in July, and then would have been finished.

We were a bit bummed out at first of the results, because this means he will not be done with the intense chemo treatment until the end of November. And for me, the 10 week break will just be like sitting and waiting - I want the hard stuff to be over with! But in reality, it is better to have this MRD testing, and if it means that he has less chance of relapse after all this, then it's the right thing to do.

Actually, we were told that hardly any kids are put on the standard arm, it is pretty rare. I wish they would have told me this at the beginning, because then I wouldn't have got my hopes up that we would be done with all the hard treatment so soon.

Here are some pictures from the hospital this week. Sebastian took some of them, can you tell which ones?

Sebastian eating bread in his bed.

His infusion IV bag of methotrexate.


Stella.


Stella hanging out in the bugaboo.


Photo by Sebastian.

On a personal note, I went to the dentist this week to get two cavities filled. Yes, it's quite embarassing to admit, but I did have two of them. And even more pathetic is that I hadn't been to the dentist in almost 6 YEARS! The cavities were not problem, I got numbed for that, but the cleaning was AWFUL! I still cringe thinking of the scraping the hygenist was doing. I will never miss another dentist appointment again. Afterwards, I was feeling all pouty and sorry for myself about how much my mouth hurt, and then I had to think that I had to suck it up, because Sebastian is going through so much more turmoil than my stupid dentist appointment. He is so tough.