Well, here I am, back again. It has been a very long, hard week for us here. Mike is still not walking and he seems to still have major 'off centered' moments, leaning to one side, only sitting in the 'W position' and just not comfortable so much of the time. He has started to stand for more than a minute at a time so I am hoping, since we are about 17 days after the last chemo treatment the VinCristine is coming out of his system and he will slowly regain strength and skills that he has not used in 2 weeks and counting.
So, Tuesday my dad and I brought Mike to MSKCC for his scans. He was scheduled for a 10:30 MRI to be immediately followed by a spinal tap (LP) and an EMG (a neuro-physical exam that tests nerve conduction). We had to be there at 8:30AM with a very hungry little boy! He had to be NPO from midnight because he had to be put under anesthesia for the tests. He was a champ though. We took him to get accessed as soon as we got there so that we could get blood work back and get him checked out quickly and he could play in the playroom before we went to the MRI. His levels came back great!! I guess not getting chemo for 2 1/2 weeks REALLY helps you bounce back! His WBC was 4.9, HGB was 11 (the first time it's been this high in about 2 months!!), ANCs were 2.0 (YAY!!) and his platelets were 166. It was great to see everything coming back and I could tell they were going to be good because he is definitely acting a little better. He is interested in doing things again and wants to play. The problem comes in that as soon as he puts his feet on the floor he hurts. It is heartbreaking to watch him want to walk and want to go and be the active 3 year old that he has been but he can't do it. I hate watching him like that, I hate that he is more comfortable laying down or being held than running around and being 3. It is hard because he goes from wanting to lay on the couch to playing on the computer and he gets frustrated that he can't get up and go on his own. He has to wait until I can pick him up and carry him. Usually he decides he wants to move just 2 minutes after he decides he is hungry and wants eggs and ketchup or a waffle and I am in the kitchen cooking! I feel so bad because he wants to do so much but gets so frustrated so easily because he can't.
So, anyway, he came through the anesthesia and testing like a champ. He was coming out of anesthesia by 1/1:30 and the NP told us that we could wait b/c the Dr that was on clinic duty that day could go upstairs and look at the MRI. So, we waited and waited... At one point my dad asked Cheryl where the Dr was and she said she just spoke to him and he would be back in a few minutes. 30 minutes later I went to Cheryl and asked her. She said she didn't know why he was so long but he had looked at Mike's scans and had to look at someone else's and would be down shortly. I said Dr time is so unfair because to them it's just 20 minutes, to a mom those 20 minutes are 50 years off of her life. Finally, he came back down and we were called into the exam room. We got news that we were not expecting. It was not horrible but it was not good. The tumors have stayed the same in the spinal area but they have grown around the brain stem. The Dr that we saw on Tuesday feels that with even this small growth that the neuro-toxicity issues that Mike is having (the loss of muscle use in the legs, the foot drop, the tremors, droopy eyelids... ) are VinCristine related and not tumor growth related. I, and he agrees, feel that the risks of this drug are now very much so outweighing the benefits of it. My feeling is that if they could have looked at the MRI on Tuesday and told me that the tumors were shrinking and the 2 drugs he is on are doing the job that they are supposed to do and getting rid of this stuff in Mike I would be able to try to take the side effects as they came and deal with them as we had to. They can't tell me that, in fact they are telling me that they are not working on at least part of the tumors. So why should I put Mike through these debilitating side effects to have tumor growth? The Dr on Tuesday said that there are many more chemo drugs that we can try and that the team will meet and discuss what one(s) they feel will work best on the tumors that Mike has. I called our primary neuro-onc Dr yesterday and e-mailed him today. I am waiting to hear from him so that we can decide what to do start him on next. I hate that we seem to be back to square one. I hate that all of this that Mike has been going through is because of drugs that are not doing what they are supposed to be doing.
So, now I wait. I wait for the neuro-onc team to hash out what drugs they think will be the next course of treatment. I wait for the call to come in and discuss what the options are and to decide what to do. And while I am waiting I will make calls to other cancer centers to see if they will be able to accept pathology slides and frozen sections of Mike's tumors to have more eyes looking at everything so that hopefully someone, somewhere will be able to identify what is growing in Mike and we can then make a more educated decision on what chemo to use. And, of course, I will take care of Mike and Katie and be praying and hoping that I make and have been making the best decisions possible for my little guy.
He is awake in his crib and I don't want to leave him up there any longer. I need my Mike hug fix for the morning! :) I hope that you are all doing well. Please, please, please continue to keep the prayers coming. Pray for Mike that he has the strength to get through all of this and that the drugs that are in his system wear off soon so that he can get back to walking and running and being the nutty 3 year old that he is. Pray for Katie that she continues to be an amazing big sister and that she asks the questions that so often fill her with worry. Pray for the oncologists that they make the right decision on drugs for Mike based on the child and his tumors and not let their egos get in the way. Pray for the pathologists that they see something in Mike's tumors that they didn't see the last time they looked and we finally get answers. Pray for our family and friends, if for no other reason than that they have been so wonderful to us. And lastly, please pray for me (and Matt too) that I/we have the strength and health to care for our kids through all of this and that the decisions we make are the best possible decisions we can make for Mike and for Katie.
Thank you so much. Sending our love and hugs and prayers to you all!
Thursday, January 15, 2009
Posted by Chrissie at 7:52 AM