Spot on Asher's Spine
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.
Headaches
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, Eyes, on Wednesday, April 21. 2010 at
update
Asher's first grade teacher called me at 11am, the kids' lunchtime. She said she noticed Asher's eyes fluttering today.... Once I get a hold of my emotions, I will talk to her more about it, probably after school.
Just doing some reading, after my first reaction being - the fluttering is due to his scarred retinas - however I don't know everything and didn't see it happen. Read this on a website: If when he has the eye fluttering he stops his activities and stares, it could represent a seizure. Which is what I mentioned to Annie today when I called her about these things, and of course what put my emotions in instant panic when the teacher called. But, maybe it could just this bad eyesight, especially if he had just come out of the sun and into the classroom (although it a very cool, cloudy day for us today).
update
I talked with Asher's teacher after school and she said Asher was reading in front of his class. It was his day to share his journal. He was standing in front of the class reading, looking down at his paper and then back up at the class, and then back down at his paper. She said all of a sudden he put one hand to the side of his temple, near his eyes, and then both of his eyes fluttered. She said both her and her student teacher noticed it. The teacher said, "Asher, are you okay?" and then he said, "Yes!" He responded immediately and it doesn't seem like a seizure to me. Sounds like a focusing problem....poor eyes.
Anyway....when we were home an hour or so he said, "Br, I'm cold," and sure enough, he had a 101 fever....so I am sure all this crap is just because he's sick!! What a relief!!!
Hand Tremors
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, on Thursday, April 15. 2010 at
http://wiki.answers.com/Q/Why_do_your_hands_tremble_after_exercise
http://www.merck.com/mmhe/sec06/ch091/ch091c.html
4/20 - talked to Asher's teacher tonight - she said she hasn't seen anymore tremors - she did tell me it was in one hand, she thinks, as he was holding a book with one hand and pointing to a word with his other hand and the whole book was shaking - I'm thinking I don't need to worry unless I see it happen again....
Pencil Grip
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, Fine Motor Skills, on Friday, March 12. 2010 at
MRI Time
Posted by Steph in
1 First Grade, 2 Years Post-Treatment, Scans, on Sunday, October 11. 2009 at
MRI/anesthetic went fine.
Friday we asked to have results over the phone because we needed to move from COBRA to our new insurance on 10/16 (effective 11/1). We would have stayed on COBRA till the end of the year if Asher needed anything medical done since our out-of-pocket was already met for this year.
Annie called us back at 5pm Friday and told us the results were clear, stable, no changes since last MRI.
I'll have more formal results (and maybe even some lab results) after clinic at the end of the month.
Kids go back to school tomorrow; we had a nice 'fall break' last week.
3 month eye checkup
Posted by Steph in
1 First Grade, 2 Years Post-Treatment, Eyes, on Wednesday, September 30. 2009 at
No news is Good news
Posted by Steph in
0 Kindergarten, 2 Years Post-Treatment, Family, Scans, on Monday, March 23. 2009 at
Spring break week went very very fast. We ended it with Asher's sister's 5th birthday today. Tomorrow is back to normal routine again.
Balance
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Tuesday, January 6. 2009 at
Asher was back to school today after two full weeks off. He had a great day, I can tell.
Next break is a four day weekend, soon, and he'll turn 6 then. We're still trying to plan what to do. A little driving trip is probably in sight.
Jumping off the Couch
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Thursday, December 18. 2008 at
So, about his physical strength....when I watch him run, after he gets home from school, he takes a huge, huge stride and really swings his arms and really moves his hips. I'm amazed watching him. He has come home from school and said his friends are always faster than him. He says, "D and B just go running right past me and get way ahead of me." The thing is, now that he started eating his lunch again (he went a week or so without eating and he was getting physically exhausted), when he gets off the bus, he wants to walk home, even run. Alexa wants to run with him. If she gets anywhere near him, from behind, he turns around and yells at her to, "Get away!" "Stop it!" And, I'm not sure what the right thing to do is, but I want him to win, sometimes. I ask Alexa to let Asher beat her home. And, he is fast, but after a full day of school, come 3pm, he's pretty tired, physically. If it were in the morning, I think he could beat Alexa in a running race. Anyway....
He's growing up, so fast, right before my eyes. If I ever doubted my decision not to put him into formal physical therapy, I don't anymore. One half a year in kindergarten, two to three recesses a day, PE every eight days I think it is, has helped him so much! And, I'm not taking him out of the classroom for PT at school, where he is learning to read and write, which at this point is more important at school since I struggle getting him to 'study' at home. He has so much more confidence now that he's in school. He's gaining independence. He's maturing and amazing me, every week.
Two more days of school and second quarter is over. He then has two weeks off for winter break. I'm also excited, because in January he has a couple of days off of school, and they happen to land right before his 6th birthday and right after, giving us a long four day weekend. So, we're hoping to take a little trip. We'll see how it plays out.
Question from Asher
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Sunday, December 14. 2008 at
A "Why did God give us blood? I mean, why is there blood and then skin and then our eye goes in there?"
me thinking....uhhh, I dunno. OK, I'm a mom, I know things, make something up.
me "We have to have blood going into all parts of our body for our body to be strong and alive. Our heart pumps our blood to all parts of our body."
A "What if our heart stops pumping the blood?"
me "We would die. We need our heart to pump the blood so we can live."
A "Oh. Well, I hope my heart doesn't stop pumping then. It is going to pump and pump and pump. I'm gunna get old... Ah... (shaking his head a little to change his mind) I want to live forever."
Thanksgiving
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Family, Infection, Quotes / Inspiration, Scans, Thank Yous, on Monday, December 1. 2008 at
Robert Nathan
Lots to be thankful for, this year, each day. I could write a book on what I am thankful for, but I won't. Not here.
I do want to say I am thankful to the hospital staff for making Asher's Wednesday MRI go soooo smoothly. Very happy with the care they gave him. We, of course, are still waiting the results, and most likely will get them at clinic mid-December.
I'm also thankful for my mom and her wonderful cooking. It was nice to relax and enjoy and I know she was tired, hot and feet hurt from cooking and I appreciate her so much! We all were stuffed from Thanksgiving lunch.
I'm also thankful for my sister and her husband for making the 13 hour drive down to visit us. I could never image the chaos of getting ready to travel with 4 young kids or even actually doing it. I miss them and love seeing her 1-2 times a year.
I'm thankful for my hubby, for sooooo much, but this past weekend, for letting me sleep in two days and for taking care of all the kids, alone, Friday so I could have an adult day at my mom's house.
I'm also thankful for those of you still coming here to check up on my boy, Asher. He's my world, and knowing he's a small part of your world means so much to me!!
Asher is doing well! However, he has started a low grade fever, yesterday, (100), and just could not hear us the last two days. He only complained about a little pain in an ear, but asked which one, he couldn't say. He never needed medicine for the pain or low grade fever. I am sure he has a double ear infection, or at least in one ear, so off to the doctor tomorrow. He still has a runny nose and is coughing, and this just seems on-going, and on-going. He has DIBELS testing, at school, starting tomorrow (Dec 1-3 I think)....so....not sure....but I don't think I'm sending him to school tomorrow until we see the doctor.
We have some Christmas lights up, outside, but not the tree yet.
update 5:30pm....no sooner than I finished posting this did a fever spike....102.7 right now....and his left ear is hurting where he's in tears....so....he got ear drops and motrin....trying to decide if we'll go to a nearby walk-in clinic, which we think closes at 8pm, or wait till 8am to go to the pediatrician's....he fell asleep on the couch
update 4pm Monday....went to the pediatrician this morning and Asher has a double ear infection....starting Cefdinir tonight
Double Ear Infection
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Monday, September 29. 2008 at
The doc had flu shots this morning, but we're going to wait till his ears are all better. His next set of vaccines are due in three weeks, so we can do it then. Asher will need two half doses of the flu vaccine.
update 3pm: at 2pm, when the Motrin wore off, Asher's fever spiked to 107....why is it that Asher has to have fevers that go so high....they freak me out....
Getting knocked down
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Friday, September 26. 2008 at
I was thinking back to what the principal all said to me. One of which was how Asher's teacher was concerned about his body movements during transition, arm movements, and speed. I assume going from one class or activity to another. I'll bet Asher gets plowed over by other kids, who are usually always running, excited to get to where they are going.
The Call from School
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, on Thursday, September 25. 2008 at
That has been hard to admit to anyone.
When I ( try to ) forget the past, it is easier. Coping. Life.
Like Asher said when I asked him if he ever tells anyone he had cancer, "It's a secret."
I just wanted him to go through life like he didn't have to explain anything, he didn't have to have excuses for anything, that he was just "normal," like any other boy.
I just got off the phone with the school principal. I was holding my breath until she said, "Nothing is wrong at the school."
Asher's teacher has talked to her about Asher. Her main concern right now: Gross Motor Skills (bigger movements — such as running and jumping — that use the large muscles in the arms, legs, torso, and feet — whole body movement).
The principal wanted to know if he was in therapies right now. I gave her the run down of the evaluations we had done and that they weren't all back yet. I did tell her that I just got back the PT one and the conclusion is that he is within normal limits and doesn't need therapy.
Interestingly enough, clinic was yesterday and I was asked, "Has his school called yet?" I said no. So, I guess a day later and things have changed.
Now I have to face reality again. I need to get outta the fog and stop pretending cancer didn't happen. When I do this, sometimes it is hard to stop crying. Right now the tears are just flowing...and flowing...
Makes me think about how Asher probably feels when he is at clinic and people talk about him, look at him, make a fuss....
We don't want to talk about it.
But, we have to.
I have to start the process to get the IEP. I'll be working on a letter to the principal this week.
Another Fever
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Saturday, September 6. 2008 at
update Saturday 9/6: 101.8 fever still, at 12pm Saturday. Slept from 8:30pm last night to 9:30am this morning. Not eating more than 2 bites a meal. Drinking though. Tylenol has been keeping the fever away, ever four hours, and he ate a huge dinner, but he went upstairs, shivering, to the den and fell asleep on the couch within minutes and by 6:30pm his fever reached a sudden 105.1, freaking me out, but Motrin took it down to 101.5 by 7pm....still no obvious reason for the fever, so watching him closely.... by 8pm his fever was gone (temp around 99.6) and he wanted some chicken noodle soup, and now 9pm and he doesn't sound tired....yay motrin....now hoping Scott will watch him around 11pm in case that fever returns, because I'm going to bed, only got about 3 hours of sleep last night with the ding-dong ditchers (who TP'd our front yard and then rang our door bell) at midnight and me not being able to fall asleep till almost 2am, and then Asher up at 5:30am with a fever and Andrew waking up a few minutes later and then heading out to mow the front yard and get the toilet paper outta my trees and bushes....
update Sunday 9/7: 101.5 fever at 5:30am and at 12pm....woke up from a nap at 2:30pm all sweaty, so maybe the fever is finally gone for good....well, no, wrong, 7:30pm temp at 101.5 and climbing, gave more Motrin....
update Monday 9/8: I fully intended to keep Asher home from school today, because of his fever through the evening yesterday, but I wasn't expecting him to wake up crying with a fever so high the forehead scanner thermometer (what is that called?) had "HI" as the readout, instead of a number! For some reason when Asher gets a fever, one side of him is 2 degrees hotter than the other. So one side read 104 and the other "HI"....you get the idea. I used an underarm read out of 104.5 to make sure I was getting the right number then. Motrin worked its magic, though, and he slept through the fever coming down to 99. I can deal with fever associated with a reason for a fever, but it is another thing for me to emotionally, rationally deal with a fever with no known cause. So, my anxiety was going through the roof this morning, and I was almost in tears about it. Before Asher's cancer diagnosis, I was a very laid back mom when it came to illnesses. I figured things would run their course; no need to rush to a doctor. Nothing bad would ever happen to my kids. Lately I have been thinking about the worst possible things a fever could mean and I've had nightmares the last two nights about very odd things.... Anyway....he is eating just a little today, and drinking okay, and he is playing and playing since 10am, once he got up, along with another dose of Motrin. He has a pediatrician appointment tomorrow at 12:30 if his fever persists.
Update Monday Night: Motrin is doing its job, with only 2 doses so far and one more before bed here, soon. After dinner, which he ate a very small amount of (again), he did three homework sheets. He is always so happy to do them. I have his supplies in a box for him, which he says his school box. He got it out and did very well on his homework with me just reading the directions to him. He had to circle ten pictures of things that started with the letter T. Each time he said what a picture was, he said, "t-t-t-t-t" for the sound if it started with T and then he circled it. His teacher is doing an awesome job of teaching him and I'm so proud of him, that he will show me what he knows and is enthusiastic. I notice very little frustration. He erases an error and tries again. He never used to be like this. Of course, I have him do home work on days he has not been in school. I have no idea how he will do once he needs to do some on a school night (those nights are a challenge). Anyway....we'll see what the morning brings as far as a fever goes. Sometimes it is hard because I think, "Oh, he had Roseola as a kid," or blah blah blah, and then I remember, oh yeah, we had to start over. He has no immunities, as of 3/13/07, his immunities were wiped clean. Like that of a 1 1/2 year old toddler now, but he's in kindergarten. Also, he can not have the measles vaccine or chicken pox vaccine until after 3/13/09, so I worry a little bit more about him being exposed to those illnesses....as well as a few others where he just isn't caught up yet. Oh....and something cute....Asher went up for bath and he immediately got the armpit thermometer and took his temp and told daddy, "This is what my number is under my armpit."
update Tuesday a.m.: Another 105 fever at 11pm (daddy didn't give the Motrin before bed, thinking he may not need it)....this morning his temp was 100.6, not too bad, but gave him Tylenol....he'll go to the doc today just to make sure nothing needs antibiotics.
update Tuesday 2pm - doc test for (1) strep (negative), (2) mono (full results not back yet), (3) pneumonia (negative)
update Tuesday night: So, still no answers to why the fever. It was 101 this morning I gave him Tylenol. It was 100 at the doctor's office at 12:30pm, but, on the way out of the room, he grabbed his tummy in pain and his fever spiked up again. The doctor got to see it (glad!) and she had the nurse give him Motrin then, so when he got home, his temp was 98.7 on the button. The doctor reminded us that he will have 2 year old illnesses "again." She said we did right, day 4 of fever, go to the doctor. That is when they can start to test to rule things out. But, if the fever isn't gone by Thursday, then we need to take him back in Friday because after day 6 of a fever, all sorts of other things could be the cause (her words). Anyway....part of me is hoping this is just roseola....which he had at 13 months....I'm going to sit and watch for that chest rash. When asked if Asher could go to school tomorrow, her answer, "Oh no! He's too sick." She is supposed to be faxing a note to the school. He's been pretty moody today....been a long day....I think he's tired.... So....we're waiting for the blood test for mono to come back. If that is negative, then we'll take him to a nearby lab and get more blood taken so a full workup can be done.
update Wednesday: Asher woke to a 100.5 fever, not too bad. He had motrin last night around 10pm and then this morning at 7am or so. It is now 3pm and I'm not giving Motrin unless his fever returns. We shall see how the night plays out.
update Wednesday night: When Scott got home, he carried Asher upstairs (Asher said he couldn't walk)....we had been playing sequence for kids....Scott set him on the bed and turned around and he was asleep the next breath. I went up there and started talking to him and Scott said, "He's already asleep." Well, I woke him up, because I remembered he didn't eat (he had refused dinner at 5pm). So, it is 7:30pm now, and he's eating some food. He went from 11am until 7:30pm without eating. Not normal for him. He still hasn't had anymore Motrin or Tylenol. His temp has been fluctuating between 99.6 and 101.3, and I'm watching it closely. We're getting to that magical point of having to call and bring him back to the doc; if he has a fever tomorrow, we have to call for an appointment for Friday morning. I have been lifting Asher's shirt all afternoon, and into the evening, hoping for a rash. With the lack of 'high' fever returning, I was hoping for a sign of rash that would be the end of roseola. Anyway....off to bed....
update Thursday: mystery fever has vanished....bye bye fever....Asher will be going to school tomorrow
update 9/15: after the fever broke, a cough started....just in the morning at first....but now all day, and a pretty rough cough....poor guy....
