Sebastian was admitted Monday night for his last week of MTX treatment. Yesterday was the "hard" day, and this time Michi stayed the whole day with him. It's hard because he gets the spinal taps on Tuesdays, and therefore cannot eat or drink anything before he gets the anaesthetic for the procedure.
Michi said he was very angry about going into the treatment room and said he did NOT want his back to be looked at by the doctor. So they had to give him a sedative before the anaesthetic, something extra this time, in order to get him to calm down. This extra drug made him sleep even longer afterwards, but at least it wasn't a fight this time to keep him laying down after the procedure. Normally, you have to lie flat for an hour afterwards to prevent "spinal headaches". Sebastian usually hates this, and fights it the whole time.
But it's done!!! He will have to have a few more during treatment, but I am so glad that at least for this phase, the spinals are done. He was hooked up to the infusion yesterday, so hopefully we can go home Thursday evening or Friday morning.
I am looking forward to this phase being over with, because the hospital stays are BORING, for us all. The next phase will just be outpatient, given that Sebastian doesn't have any complications or fevers.
There have been a wave of new patients at the hospital the past two months, more than normal. I read on a listserv that I subscribed to (for parents of kids with ALL), a description of how one mom could recognize the newbies. "The child still has hair and the parents have that deer in the headlights look about them" - that's what I see in these new parents now, and that was us just a few months ago. Amazing how life with cancer can seem like the new "normal" only after a short time. We still have a long ways to go in the treatment, but I am glad at the end of every day that we are reaching the treatment goal.
Tuesday, June 26, 2007
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?
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?
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.
Monday, June 11, 2007
Check-in
We went through the entire second block of MTX with very few problems. Sebastian didn't get any mouth sores this time, and he didn't develop a fever. So we were able to stay home the whole week! The only bad thing that happened was that he fell from his stool next to the sink and cut his lip open - that hurt for a few days. But it didn't bleed too much and it healed quite well, so that shows that his white cells and platelets were ok.
Tonight he checks in for the third MTX treatment, and we plan on being out by Friday. Michi's mom is here this week, so that will be some extra help.
We hope we will get the MRD test results this week to find out if we are classified in the standard or middle risk protocol (meaning if his intense treatment will last until Sept or December this year).
Before photo: Michi decides to shave his hair. Is that Sebastian in the background with the clippers?
After photo: It's shorter, but not all the way gone. Sebastian didn't shave it all - he got bored after about 2 minutes.
Tonight he checks in for the third MTX treatment, and we plan on being out by Friday. Michi's mom is here this week, so that will be some extra help.
We hope we will get the MRD test results this week to find out if we are classified in the standard or middle risk protocol (meaning if his intense treatment will last until Sept or December this year).
Before photo: Michi decides to shave his hair. Is that Sebastian in the background with the clippers?
After photo: It's shorter, but not all the way gone. Sebastian didn't shave it all - he got bored after about 2 minutes.
Sebastian taking pictures with his CAT photo camera he got from Uncle Bob, along with a lot of cool hats for his cap collection!
Sebastian went to the Prater with Papa and Stella really early last Friday morning before it got crowded. He got to ride on the carousel. He chose to ride in the truck, of course. Where's Mommy? At home sleeping - it was her birthday!
Sebastian running outside on the terrace in the rain during yesterday's thunderstorm.
Friday, June 1, 2007
Another week of therapy done
Sebastian finished his second round of high dose methotrexate. We were admitted on Monday evening so he could be hooked up to an IV and receive fluids (normal procedure). On Tuesday afternoon he got another spinal tap with methotrexate being injected into the spinal fluid. Then they started the methotrexate infusion, which lasted a little over 24 hours. After this, he continued to receive fluids to flush out the medicine. The methotrexate should only be in his system for a certain number of hours, otherwise it is too toxic. Everything went fine, and we were released on Thursday night again.
We are waiting to see if he gets the mouth sores as a side effect again. Last time he woke up during the night on Saturday. So let's see if the same happens tomorrow night. We have mentally prepared ourselves that we will be in and out of the hospital for the next six weeks, so if we are admitted again, that's ok. His blood values are really up right now, but again, we expect them to crash on Monday like they did last time. So we will have to take advantage of tomorrow while he still feels well and is able to fight off any infections that may come his way!
Stella was really crabby tonight - chewing on her fists and slobbering a lot. The thought of teething ran through my head, but it seems so early for that. Sebastian got his first tooth around 8 months, can it be so different? Well, everyone is entitled to a bad day, and she is sleeping like an angel now, so maybe it's nothing. Will keep you updated.
Michi shaved his hair really short. I will post the photos once I download them from the camera. In the meantime, here are some other pictures from our outing last weekend.
Walking along the wine cellar road in the village of Hoeflein.
The vineyards of Hoeflein.
This is one of those pictures that Stella will hate us for taking later on in life. Can you pull those pajama pants up any higher, mom?
We are waiting to see if he gets the mouth sores as a side effect again. Last time he woke up during the night on Saturday. So let's see if the same happens tomorrow night. We have mentally prepared ourselves that we will be in and out of the hospital for the next six weeks, so if we are admitted again, that's ok. His blood values are really up right now, but again, we expect them to crash on Monday like they did last time. So we will have to take advantage of tomorrow while he still feels well and is able to fight off any infections that may come his way!
Stella was really crabby tonight - chewing on her fists and slobbering a lot. The thought of teething ran through my head, but it seems so early for that. Sebastian got his first tooth around 8 months, can it be so different? Well, everyone is entitled to a bad day, and she is sleeping like an angel now, so maybe it's nothing. Will keep you updated.
Michi shaved his hair really short. I will post the photos once I download them from the camera. In the meantime, here are some other pictures from our outing last weekend.
Walking along the wine cellar road in the village of Hoeflein.
The vineyards of Hoeflein.
This is one of those pictures that Stella will hate us for taking later on in life. Can you pull those pajama pants up any higher, mom?
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