Posted by Steph in
6 Sixth Grade, 8 Years Post-Treatment, Clinic Visits, Feelings, Scans, on Thursday, February 19. 2015 at
There is a "spot" on Asher's spine. That is all I was told at the annual clinic with Asher there, and Scott wasn't there. So, after leaving, Asher asked, "Can this spot turn into cancer?!" I then realized I asked NO questions. I scheduled an appointment to see the oncologist to ask my questions!!
Here are the answers / information:
(1) The spot is around 2mm
(2) It has actually been there since February 2011, tiny, and much more obvious in November 2011, and doesn't 'appear' to have changed, although it is 'brightest' on the January 2015 scan. The oncologist went back and looked at scans to find its beginning (after I requested this one-on-one meeting) - no radiologist took note of it until this year.
(3) Oncologist has no idea what it is
- (a) it 'could' be calcium deposit
- (b) it could be a blood vessel, he says, but it is only in three or four frames of the vertical scan so I don't agree, and it looks nothing like the other ones higher up
- (c) it isn't Meningioma since he didn't have radiation
- (d) he doesn't think it is cancer since it isn't more nodular and it would be faster growing
- (e) he cannot say that it won't turn into cancer (I did not tell Asher this, since this was the only question Asher)
(4) MRI with contrast is best to see it, which is what we did
- (a) cannot do PET scan or Spectroscopy as it is too small
- (b) doesn't want to do a spinal tap because he believes it won't find anything and why bother putting him through anesthesia
- (c) doesn't want to do a biopsy as it might damage nerves
- (d) doesn't want surgery (which at this point would be the only way to find out what it is, and even then the surgeon might not see it)
(5) since it 'appears' that it has not changed since last year, staying on 12 month MRI schedule is ordered
(6) symptoms of growth would be associated nerve pain in back at L1 and L2 and appropriate radiating pain
(7) what else....no one is concerned....cept me....I'm his mother
I have told Asher it is not cancer.
I find it almost ironic that the last post-treatment blog post I made, 4 years post, was the one where this spot should have been noticed / noted / discussed.
Asher is 8 years out of treatment!! He is in 6th grade at a middle school. He has an IEP and has Math resource which replaces social studies. (They want to take that math resource away....the issue I have with it is that he isn't getting help for his current math, it is math taught in its own level, for all the kids in it (from what I understand). Asher says he does homework too, but I don't understand when. I do want him to have that help.) He struggles with reading and language arts, and organization, and keeping up, and responsibility....and gets grades around C's....he never does homework at home and I have no idea what is going on. He says he does it in resource (I think). It has been a struggle. I wish I saw him working at home....writing and reading. He just wants video games. He is so smart at math and logic and building and computers. At school they built a tower out of spaghetti and he won! (Suppose he may take after me, the structural engineer in the family....and a lover of architecture (there is a famous American architect named Asher Benjamin, and I knew that when I named him lol).) He takes PE for his specials class and the other is computer generated and offered music the first half of the year and this half he is in some computer class that he says they do typing. He is a moody child. Very very moody. Hardly ever happy or smiling. Very unlike the way I remember him when he was young. I suppose this is puberty. I miss him holding my hand or hugging me or telling me he loves me. But, I know he does inside himself.
As for me, a mom of a brain tumor survivor, I am doing pretty well. I am still a stay-at-home-mom. I can't imagine trying to have a job again. It seems every week, I get at least one kid that needs to stay home sick, and/or I get a call from school that I have to pick a kid up. I did start a hobby, though. I breed cats. Exotic shorthair, exotic longhair, and Persian cats. Boy does it allow me to nurture babies again. Kittens are amazing. And, I make people happy with their new life-long companion. I still see my psychologist, yes. She is my crutch. She is trying to get me to be less dependent on her and be stronger emotionally, on my own. But I still see her 3-4 times a month. I'm selfish and want to see her. I also still don't handle stress very well. She would say I don't have enough support people in place, but I actually do. I have a lot of friends (mostly online - Facebook). But, some stuff I 'can't' talk to them about. I still take medication and I might for the rest of my life. I've had depression pretty much my whole life, and it was just the traumas/triggers in my life that would put me into a really bad place. The medication helps. I still struggle with the MRIs and going to the hospital and clinics. A few years ago I choked on chicken at Wendy's right before going to clinic. I was okay, but had to go by ambulance to the hospital and have a scope done to remove it. Poor Asher....his dad was in town, thankfully, and picked him up at Wendy's and onto clinic they went. My anxiety gets so strong. Even this year, like the previous, I sit in the cafeteria at the hospital during the MRI scan and have a good cry. At least I'm not in the bathroom puking, like I did a year or so before even that. The PTSD is strong at the hospital. Even now just typing this, and thinking about that, brings tears to my eyes. Am I worried about this spot? Yes. How much will it affect my daily life? I don't know.
"The real work of our lives is never complete. The very nature of our existence involves the priviledge to evolve. Each of us is a person in process, an on going masterpiece that grows richer and fuller with each rendering. There is not such thing as a "finished person." Whatever your circumstances are, it is your challenge to keep asking yourself the tough questions that will move you forward in life. Joy isn't waiting on the other side of the process. Joy is the process. And if you put your faith in that you'll always land exactly where you should be. The greatest joy lies not in simply being but becoming."
Asher was 3 years 4 months 9 days old when he was diagnosed with Medulloblastoma on 5/26/06.
Treatment ended with a stem cell rescue on 3/13/07.
NEXT MRI / CLINIC:
Treatment ended with a stem cell rescue on 3/13/07.
NEXT MRI / CLINIC:
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