We went to clinic yesterday. Asher's MRI was "crystal clear." His hearing is normal. All blood tests were normal. Everything is just fine. Asher has graduated to MRIs every six months, now, instead of every four months. They also said because he didn't have disease in his spine originally, that the spine no longer needs to be scanned. Last year they told me this, and then I asked if anyone relapsed in the spine and not the brain, and if I am remembering correctly, the answer was yes, and she was five years out. So we continued scanning the spine each time last year. Well, I'll just say, I'm not ready for 6 month intervals, but we carry on....
<----Asher on dome climber at home

Asher is now 2 1/2 years post treatment. This past Thursday, he had his brain and spine MRI at 9am. It was the first one four months after the last one. Prior to this we were on a three month schedule. The extra month didn't really feel that much longer.

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.

The MRI is stable, NO EVIDENCE OF TUMOR RECURRENCE.

This time (unlike three years ago) it sounds as if he might just need glasses (or minor surgery) to repair an eye muscle problem....although we haven't met with the pediatric eye doc yet (we do that this Friday), I'm just making assumptions based on some research.

I appreciate the love and support I received from all my online (facebook) friends the last two (panicky) days!!!

And, I appreciate A's oncology team, who, as Annie said, is just 'doing their job,' taking care of my boy!

Asher's eye has started to go inwards....

Not sure when it started, but a friend noticed in a photo posted on facebook and called us on 5/22. I saw it, too. But yesterday is when I really saw it and my emotions/body went into a major panic for several hours....

I slept okay last night.

Other than being shakey and running to the bathroom, I'm not doing too terribly today. I convinced myself (well, okay, I didn't, but I calmed down a bit) that since he's not throwing up in the morning and not saying his head hurts, that this is JUST an eye problem, not something in his brain....NOT cancer....

I moved up Asher's well-checkup from Monday June 8th to Thursday June 4th so I can have his pediatrician take a look at him. I also found a pediatric eye doctor that can see him this Friday, June 5th. And, I just got off the phone with oncology....they have moved up his 7/17 routine MRI to next week, June 12th. And, they aren't doing just brain, they will include the spine.

So, I'm a bit spinning in my mind, in my spirit....

I had gotten to the point where I never thought I was going to feel panic....

But, really, I think he is okay, and he just needs glasses....

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And, now I just got off the phone, again, and they moved his MRI up even further....it is tomorrow, 10am....

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Now if I could be as 'excited' as Asher is....I just told him that his MRI is tomorrow and he said, "Is that the one with the mask?" "Yes, it is." "Yes! I like that one. Tell them to put the IV in my foot, because I know I have to have that. And don't forget the stroller, because you can't carry me."

Well, I'm anxious, anxious to dismiss the idea that cancer is back....

Let me start by saying, the MRI results are, "stable, no evidence of tumor recurrence."

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.

We have not received a call regarding the MRI. I am sure we will receive good MRI news on Wednesday!

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.

This morning Asher said to me, "I want to go for my MRI RIGHT NOW." I told him, "Sorry, you have to wait till tomorrow morning."

We have no worries. I don't even have any anxiety today. I'm glad.

Tomorrow should go pretty smoothly. We check in at 7am and I believe Asher is the first patient (that always helps, in and out). Anesthesia, IV after he's asleep, blood draw to check counts (it has been awhile), and that's it, I think. They are scanning his brain and spine. This is the last time they scan his spine every time; I think it is done annually from now on. Or, is it not at all? Ugh, I don't know. The issue with no scanning his spine has me worried, a little, but I will keep my faith and believe if his cancer comes back, it will show up in the brain first. We are now going every four months. Only three times a year. So exciting to be doing so well that we are able to get further and further away from the memories, with less and less checkups.

The hearing test this past Monday showed that Asher has significant hearing loss. It is NON-PERMANENT loss though. When she checked high frequencies, with the special headphones that take the sound right to the inner ear/bone (bypassing the middle ear), his hearing was normal. This means, the loss is due to repeated ear infections and fluid in his ears from him being constantly sick. The audiologist told me to take him to an ENT doc. I think I will take him back to his pediatrician and discuss with her and then go see the ENT doc. I suspect he will have to get tubes....

Thank you for checking in on Asher and sending us good thoughts for tomorrow, that all will go smoothly with the anesthesia.

IMPRESSION:
1. Unchanged posterior fossa postoperative changes without evidence of tumor recurrence
2. No evidence of metastatic spinal disease
3. No acute intracranial abnormality

small part of FINDINGS:
MRI BRAIN:
There is a slightly improved appearance of the previously described FLAIR signal intensity which was noted to the right of the resection cavity.




Asher came home from clinic with a 102 fever....so....not sure what he's got now....

"Give thanks for sorrow that teaches you pity; for pain that teaches you courage - and give exceeding thanks for the mystery which remains a mystery still - the veil that hides you from the infinite, which makes it possible for you to believe in what you cannot see."
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

1 year 5 1/2 months post-transplant, 8/29/08 MRI was CLEAR!

The MRI last Friday went well. Traffic was light due to the holiday weekend, and we got there at about 6:45am for a 8am scan. They actually took him in at 7:30am. While we were waiting to get called in, he asked for the cherry mask that he had last time. He talked about the machine going round and round and how he didn't like it. It is the first time he has talked about the scan, before hand, with some anxiety. It is the first time he has told me details. I told the anesthesiologist to use the red mask so he was prepared and Asher wouldn't get disappointed. All went fine and when he woke up he was very confused and upset and angry....like a long time ago, when he got that way....oh I haven't forgotten. Anyway, he yelled at me all the way home. Nothing I did was right. Nothing I said was right. He wanted his daddy, not me. That he said many times over. I couldn't drive home fast enough. Anyway, we were home by 10:15am, just in time for me to turn around and take Andrew to his well-checkup, a 45 minute drive in another direction. Asher had calmed down within a half hour of being home and once he ate, he was fine.

No MRI results. No news is good news, I am sure. I am sure, too, that unless I made a point of trying to get them to call me, like I have in the past, they won't call and I won't have the MRI results till clinic, which is 3 weeks from today. The MRI was so early because it was his day off of school and I planned ahead...crazy mom.

Asher's neck was better by Sunday, but then Scott's hurt and mine, too! Oh, and Grandma Val's too. So, it must have been some cold bug passing around....our head and neck hurts along with being extremely tired....

School is going great for Asher!! I still get my sad moments, when I miss him tremendously during the day, or I get overly worried, but now I really just love that he loves to go to school. He's learning so fast, too. When he comes home, over several hours, he will tell me random things that happened during his day at school. We read more and more and more books now before bed. It feels like so many that it puts me (almost) to sleep!! I've started the bedtime routine at 5:45pm. Isn't that insane?! Well, with 4 little ones to bathe and read to, it does take over an hour. It will be nice when the older two can shower or bathe themselves! Scott gets home around 7pm; so he only sees the kids in the morning now during the week. Asher is usually asleep by 6:30pm or 7pm at the latest now! He's getting about 11 hours of sleep at a minimum. He's also eating almost all of his lunch now, including a full sandwhich, not just a half. So, I think the fact that he wasn't eating a couple of weeks ago was just stress. I'm just smiling at how much older Asher seems to be now that he has been in school for a month. The teacher has told me on a few occasions now, "He is always so polite and well behaved. He is an absolute joy to have in class." He's missed 4 days of school already, and I'm hoping so much that he won't miss any in September. But, we will see! Yesterday he told me a boy threw up in the classroom. That flu is still spreading; hopefully Asher already had that one!

The one thing that I'm struggling with is Asher's behavior at home, especially after school. I'm not sure why he acts the way he does. Some days I just want to pull my hair out.... He is treating Alexa badly, with words and actions, and mom too..... I guess at least he is good at school....

Thanks for checking in.

15 months post-transplant

Brain - Impression: No evidence of tumor recurrence.

Brain - Full Report: Midline suboccipital craniotomy changes are noted. Parenchymal {pertaining to the parenchyma (the key elements of an organ essential to its functioning, as distinct from the capsule that encompasses it and other supporting structures) of an organ} volume loss is seen in the cerebellar hemispheres. No focus of enhancement to suggest recurrent tumor is seen. The ventricles are normal in size and position. No enhancing intracranial lesions are present. Mild gliosis (scars in the central nervous system) is present in the posterior fossa (a small space in the skull, found near the brain stem and cerebellum) adjacent to the resection site.

Spine - Impression: Normal MRI of the cervical, thoracic and lumbar spine. No evidence of metastatic disease (in other words, no spread of cancer from brain to spine).

I realized today I'm starting to forget how to do things....

I went to admitting to sign-in and got Asher's paperwork in record time and then sat back down. Then I started to wonder why they weren't calling Asher's name. Then 10 minutes passed....then 10 more....then I was like, what the heck....

OH! Wait, I'm supposed to go down to radiology and give the paperwork there and sign-in and fill out more paperwork.

What has it been, only three months since I went last? How many times have we done this in the past two years?

Yeah, so it is nice, to be getting a little further away from the memories.... Not so nice feeling dumb, but.... Whatever.


All went well at the hospital today. We checked in, Asher played Toy Story on their video machine, I gave him a smooch and high-five, then he went off with the nurse to have his MRI (he talked with her about his boat (remote control one for the pool) as they walked off together and I walked the other way), then they called me in because he was done, the volunteer told me his 4 year old's name is Asher, I saw Asher (almost couldn't find his bed) all bundled in blankets, the nurse that took care of him post-op laughed because "Asher was popular," everyone knows him, she took out his IV (in his foot), then I asked her to bring a popsicle, a big colorful one (she said, "Oh, he wants a bullet?"....I didn't tell him it was called that, I thought that was weird), then I helped him wake up, he said he wanted to go home, I put him in the stroller (thankful I remembered it this time as he is 43 lbs and too far to carry out to the parking garage!), and started outta there, with Asher saying, "I want to go home," while holding his popsicle. On the way out, we ran into the M-Th, floor 2 nurse, "A," and she said, "Well, it is a good thing Mom is here or I would not have recognized you, Asher." She said we made her day.

The neat thing is, Asher and I have a good time going for his scans, now. We laugh, and giggle, and talk, and it is nice, just us. We don't get enough 'just us' moments. Three times Asher said, "Mommy, I love you," while we were at the hospital....and that was a lot seeing as that was all in one hour (and the rest of the time he was sleeping). I rarely hear that at home!

We were gone from 6:30am-11am. Not bad at all!


A good online friend, Ryan's mom, said my last post gave the feeling of peacefulness....

I am calm, and peaceful. I don't mind going for MRIs and treat them like any other 'normal' medical checkup, now. I don't even need the results right away.

I'm truly living in the moment.... I guess.

I do occasionally have the 'what-if' thing going on, and yes, I think about it when Asher is in the MRI and I'm out waiting for him, but today, I was more thinking about Alexa, in Ohio, who is in the hospital because she has a fever....I think about the other kids....and I sit and pray for them, as I wait for Asher to be done with his little nap....


Thanks for the notes/emails today & thanks for checking on my sweet boy. He's a huge part of my everything, and it means so much that you check in on him, more than you will know.

(Two years ago, 6/15, Asher had his 2nd and final craniotomy to remove his brain tumor. It was a miraculous operation and would be just the first little step towards complete healing.)

It is that time again. Tomorrow is Asher's routine MRI checkup. It is bright and early; we'll have to wake him up to take him there.

I told him today, during breakfast, about going for his brain picture. I told him his dad would wake him up early to go and after his picture and he wakes up he can have a special cheeseburger. He said, "And a popsicle?" He likes that now, getting a popsicle in post-op when he wakes up. It made me smile when he said that.

I expect nothing but good news....a clear scan!

Next week is his neuropsych evaluation at the hospital. I'm going to be interested in seeing how that goes, if I'm allowed to watch this time.

The week following that is clinic appointment....I don't think I'll have the MRI results till this time (as last time they said they do NOT do them over the phone).

So, I'll update again when I have more news.

Thanks for checking in on my precious boy.