Posted by Steph in
2 Years Post-Treatment, Clinic Visits, Counts, Feelings, Scans, on Thursday, March 26. 2009 at
All clear, but still, I feel like I have been punched in the gut. In a good way....I guess....maybe....sounds weird I suppose.
Asher fell asleep only 10 minutes away from the hospital today, at 3:15pm. He was exhausted. When I woke him, though, he was in a descent mood. On the way out of the elevator at the parking garage, before clinic, Asher said, "Mom, I'm dizzy. I want another MRI today." I kind of wondered if he knew what he was talking about. Like if he knew WHY he gets MRIs. I've had a difficult time explaining to him, in the past. I've never really wanted to explain everything to him, because I didn't want to scare him. He knows little. He remembers little. He seems to not have questions. I've told him he has MRIs to make sure there are no more tumors, bad spots, in his head to give him headaches. Anyway, I actually think he might have felt a little dizzy because he was very nervous about clinic.
Dr. Etzl actually met with us today, instead of his partner. Been awhile since Dr. Etzl has seen Asher. Although Asher knows him and he has a wonderful way with Asher, Asher still refused to talk to him or barely look at him. He wouldn't walk for him, or jump for him, or squeeze his fingers, or push on his hands with his feet, or anything. He was terrified. Nervous. Dr. Etzl even said to Asher, while he was about to listen to his heart and lungs, "Are you as nervous as you look?" He was. He was rigid, looking down. I feel so bad when I see Asher feel the way he feels when he goes to clinic. Everyone is so nice to him. He never gets poked. He never gets bad news. But, it is like what he went through, 2-3 years ago, changed him forever....
When school started, a kid at school asked him about his scar and he said, "The doctors did something naughty to my head." Well, every clinic appointment, I tell him, "These doctors didn't cause your tumor or your head owie. They fixed it. They made you healthy. I am so grateful to them. I would be grateful to you if you would answer their silly questions." I told him this today, as well. I was hopeful, but it didn't change the way he was at clinic today.
Dr. Etzl showed me all the blood test results....everything normal, including kidney function, liver function, bone marrow function, and thyroid function. I don't have a copy, otherwise I would put the results here. I am going to try to get a copy, as I forgot.
Dr. Etzl reminded me what Asher's treatment goal was. To cure him, rid the body of Medulloblastoma, without radiation. He told me that there is still no evidence (proof?) that the treatment Asher had cures Medulloblastoma. He said, "Even when radiation is done right at the cerebellum, AND whole brain radiation, there is still only a 75% cure rate."
I'm not a numbers person. I never have been. I've seen this thing called Medulloblastoma blast into the lives of many kids, and it treats each one differently. Statistics? Why do they matter?
I guess I'm a scientist, to a degree. I was a engineer, a problem solver. I get why there are clinical trials, and statistics. There's a need to know what the BEST treatment is. What the BEST outcome can be, as far as living life. As far as the many children they must cure of this nasty beast. That's why we gave Asher that poison, because we wanted our child to have the best chance of beating cancer. The scar on the back of his head is a constant reminder, to me, every morning, as I brush Asher's hair while he eats his breakfast (helping it to dry faster).
But, sometimes I feel Dr. Etzl is waiting, and warning. Waiting for the cancer to come back, and warning me it will.
Or, he is simply telling me something I already know....Asher is doing so well, beyond their expectations, and I should feel blessed. (And, I do. How do I even put it into words how I feel about Asher's state of health right now?)
I've always respected the straightforward, honest, direct surgeons and doctors. I'm straightforward, honest, and direct. So, I need that in return. Especially as an engineer.
In case I haven't said it before, I don't believe it will be back. And, I'm saying this as Asher's mom, not as an engineer. Screw science.
Hi Steph. I am glad that Asher's MRI results are in and are NED.
I do understand how you feel. If something went wrong in Paul's head once to cause a tumor, why can't it happen again? Paul's oncologist said something back in December that really helped me -- he said that although a recurrance this far out isn't impossible, given the "odds", it is very unlikely. And while I know that the likelihood of Paul getting a brain tumor to begin with was extremely unlikely -- this gives me hope that maybe, just maybe it won't ever come back. I'll never be at ease with it -- but it gives me something to hang onto when I have too many doubts.
And you know, even though Paul is older than Asher, I really don't think he knows why he has to have MRIs. He has never asked and I don't offer. He knows that they are just checking inside his head to make sure that there isn't anything there that doesn't belong -- but he never questions it.
As always - thanks for the update. Take care -- Love, Margo
Yes, well said (my words also even before I saw Grandma Eunice's!).
We BELIEVE a miracle was given in answer to so very many prayers. Miracles are complete healing... "it" doesn't come back. This is a truly blessed child... one only needs to look into his eyes and know the face of God has touched him!
Steph- So glad to hear NED so very very relieved !!
I Pray that it doesn't.. that Asher's worst years are behind him.. and that as the year's go by, cancer falls into the deepest pit of his distant memories..
So glad it went well! I don't think it is coming back either! I'm with Jenn P....hoping it's far in his distant memories. He's a BLESSING to us all! xoxooxx
Thank you for your updates and your candor - I just love checking in on Asher. Your words so closely echo my own thoughts... You are doing a great job!