I took Asher back to the eye doctor, to discuss what the retina specialist reported to her, and to discuss a plan of action to help Asher see better.

First, he was asked to read the letters, starting with just his left eye.


N


Seriously huge N, staring straight at him, he sat still, quiet, and he was asked, "Can you see it?"

"No," he said, as he shook his head.

Then, again with just his left eye open, right eye covered, he was asked how many fingers she was holding up, about two feet out from his face. He said, "One," (she was holding two). She moved her fingers closer and closer and then he said, "Two," when she got to around 8 inches from his eyes.

She typed on the computer.

Then, she had him uncover his right eye, and with both eyes open, read the letters. He went all the way down, to really teenie tiny ones, only messing up a C for an O, and P for an E, that sort of thing.

She typed on the computer and left and the doctor came in.

We talked about the retinal scarring, which both she and the retina specialist both agreed, is from awhile ago. There is nothing actively damaging his eyes.

Report from the retina specialist:
"I think that the RPE changes and the optic atrophy are related to his previous craniotomies. He apparently had a lot of bleeding after (supposed to say during?) the first surgery and the findings in his eyes are consistent with the sequelae of Terson's syndrome. I think he probably had an intraocular bleed with the CNS hemorrhage that resolved and left the mild RPE scarring."
Posterior Segment Examination:
Optic Nerve - atrophic disc mild (both eyes)
Macula - RPE atrophy (both eyes)

[Recall from clinic last week - neuro does not believe the scarring is a result of his tumor (increased cranial pressure), craniotomies, or chemotherapy.]

So, what now? She told me any child she sees with one eye much worse than the other, she orders glasses for them. To, simply, protect their good eye. If something were to happen, say a pencil stabbing the eye, he could lose any (good) vision he has left. So she gave him a weak prescription, +0.5 distance in each eye, sph, trifocal reading addition right and bifocal reading addition left, cyl, and of course, polycarbonate lens.

Then, she said, he is still young, and we should try patching. Patch the good eye, so the brain has to try to use the bad eye. Will it work? She doesn't know. The extent of the retinal damage is unknown. She and the specialist do not know if the eye can get some central vision back.

Ah....I felt a bit sad....a few times during the appointment. But, I am almost past the not knowing what caused the retinal scarring. My mind goes there a bit. I'm sure in a few months it will be further from my mind. It will probably never completely leave my mind. I always want to find the answer to WHY in everything. But, I've learned, from a cancer called brain tumor, sometimes I must live without knowing WHY.

Asher and I picked out glasses and ordered them; they will be ready in a week or so. They are very cute.

Asher wore a patch for the first time tonight, after going for a swim. I must make him wear it as much as I can. When he starts school, he can wear it at home, and it is okay if he doesn't wear it at school. In three months, we'll go back to the eye doctor and see if there is any improvement. He liked the patch for all of two minutes, until he realized he couldn't see the picture on my digital camera that I took of him, and he couldn't see the food on his plate so well, and it was stuck with sticky stuff to his skin and eyebrows. I was yelled at a few times. I was told, "I can see in this eye already." "The eye doctor is wrong, I don't need the patch over this eye, this eye can see!" And a few other things. Sigh.

Oh, and while having lunch, before picking out glasses, Asher lost his first tooth! Big day for him. He's growing up.

Yesterday I took Asher to his clinic visit with his oncologist and the neurosurgeon's asst. He finally waved to them, talked to them, smiled in their presence, and did everything he was asked. It was smooth and fast.

The doctor said Asher looks well. When asked to walk toe to heal along a very straight path, he could do it. He did wobble, but he could do it.

The only thing that slowed the 30 minute appointment down was the discussion about his eyes. No one knows why he has retinal scarring. They believe it was not from the craniotomy (he had bleeding in the tumor bed only), nor increased cranial pressure (which I was told he never had), nor the infection in the back of his head, and they have never seen anything like this. Do the chemo drugs cause it; they don't know. Did he have bleeding in his brain, maybe when his platelets were low; they don't know (but they don't think so). They have no answers. They do want to pass the information/pictures along to the Head Start study to see if anyone else has seen this in the participants in the clinical trial.

I was warned, although he looks so good three years out from diagnosis, two years out from treatment, even kids that have had radiation relapse at 4, 5, or 6 years out.

His next MRI and clinic visit will be in October.

He has an appointment with the eye doctor next week.

My baby boy learned to swim last week. Swim! It was less than two weeks ago that he clung to me fretting that I might let him go (when I insisted he not wear his floaties). I told him, it was time for some swim lessons. I told him he had to stop talking so he could hear me and learn. Seriously, 10 days, and in that time, only a handful of hours. He's a little fish, I guess. Takes after me; I loved to swim as a kid.

This has hit me with a flood of emotion, more than any other milestone, or so it feels that way to me. At least sooooo far.

Watching him swim, without floaties on his arms, in our swimming pool, is an absolutely a-mazing thing. I'm smiling so big, yet want to cry.

As I watch him swim, I'm wondering, will he sink? Will he take water in? Will I have to jump in and help him?

Then my mind immediately goes back to his cancer. The cancer. It was like that, every time I looked at him lying in the hospital bed. Will he wake up? Will he vomit? Will he make it (you know, live)?

So, while I am just so happy and excited for him, I'm feeling some memories and battling some emotion. And it is hard.

Stupid cancer.

Clinic is this week. Kind of dreading it.

It has seemed like a struggle, from age 3 until real recently, to teach Asher things. I didn't know what it was....focus? Drive? Attention span? Learning disability? Cancer? Chemo? ME?

I always thought I wanted to home school my children, until I struggled with Asher. But, send my boy, who I thought could die, off to school for 7 1/2 hours five days a week?! It was sooooo hard at first. Can't say torture, but it was heart breaking for weeks, maybe even months. Then it got easier. I saw that he was LEARNING! I love sending him to school, then. Homework even became a bit easier, to get him to do it. He was able to write better, easier (fine motor skills), and I could tell he just knew answers and could cruise through his homework.

When he finished kindergarten, I knew there were things that I, his mother, still needed to teach him. Like how to tie his shoes. Here is a 6 1/3 year old boy who didn't know how to tie his shoes. Sat down this week showed him a few times, then he just did it and now does it no big deal. His phone number....he just knows it now.... Learning to swim....he's enjoying this now. Riding a bike without training wheels will probably be next, and this one may take me some time, with him.

He definitely still seems one year behind....when I see what other kids, including his 14-month younger sister, can do compared to him. He lost that year, when he was sick, and slowly came back to functioning and learning....dressing himself, going to the bathroom and wiping himself, bathing himself, simple things that I remember were on the neuropsych evaluation and I always thought, "Oh, should he be doing these things by himself?"

Helps, too, to put things in persepctive for me, when I now have my third child, who just turned 3 last month, in underwear.

Two years post-treatment, it feels like he is clear of it all, leading a life.

Yesterday I took Asher to a retina specialist, as referred by the ophthalmologist last week.

This doctor is a very busy man. The waiting chairs were filled with elderly people. Asher and I felt out of place there, however, they did have some toys in the main waiting room (only allowed there before the appointment time, though). The next two hours and fifteen minutes would be spent in this small crowded area between lots of exam rooms. There were so many employees, and everything was so smooth. No one spent more than 5 minutes in any exam room. The doctor would go room to room to room. Asher was really taking it all in.

First the gal asked Asher if he knew his letters. He said he did and she said, "Good, glad I don't have to get the pictures out." She had him hold a tissue over his left eye (seriously, a tissue?) and read the letters. The right eye tested at 20/25, she said. Now to the next eye. He couldn't see anything right away, so she moved to huge letters and he started reading and then she went smaller till he got too many wrong. At one point, she said, "Do you have that eye covered? I need to make sure." It looked like he had moved the tissue over a bit and was peaking with his right (good) eye to help read the letters. In the end she said the eye was 20/60. Then she put a drop in each eye, to dilate his eyes, and off to the waiting area, where we sat for awhile. Asher tried to play his DS but he couldn't see it anymore. We listened to some war stories from a couple of the elderly men talking. We listened to one man say he waited too long to get his eye examed and now it was really bad. As we sat and listened Asher asked questions about different things, little here and there. He was not happy his vision was "burry, I mean blur ee."

Finally they called, "Asher." Into the exam room, in the big chair, with a huge smile he went. A minute later the doctor came in, "Hi dude," he said. "I'll be with you in a few minutes," he said, as he grabbed special head gear glasses and went back in the adjoining room. With a smile, Asher said, "Was that the doctor?" "Yes, honey." "Doctor, doctor what is his name?" "Dr. Sipperly," I said. "Dr. Slipperly?" I smiled and I just cracked up laughing. I laughed and laughed. I got up and went over to him and whispered in his ear, "Not Dr. Slipperly, Doctor Sipperly. Sip per lee." He smiled big. Giggling he said, "Dr. Slipperly. Sip perlee."

Several minutes later, the doctor came in. "I hear you are one tough dude." He grabbed some papers and starting reading them. I heard him say, "Medulloblastoma." "OK, lets take a look." He looked in the right eye and said something to the assistant who typed it in the computer. That only took a couple seconds. Then to the left eye. He looked, moved a bit, looked, moved a bit....let out a little sigh and asked Asher if he liked motorcycles. Then he put the eye exam machine over to Asher and told Asher to lean forward, grab the bars and make a motorcycle sound. Asher didn't, so the doctor did it. Asher smiled. Then the doc started to look....Asher was having trouble holding his eyes open with the light. The doc could hold open the right one and look, but not the left one, which he really needed to see in. So, he said, "OK, he's not liking this. Let's send him to photo." He turned to me and said they were going to take pictures of his eyes and then he would come in and tell me about them.

So, back to the waiting room, area, between the exam rooms. And more waiting. I listened to Asher beg, "I want to see again. I want to go." It kept on a bit until I told him to play thumb wars with me....then rock paper scissors....(remind me to bring a children's book next time I go....oh wait, there won't be a next time).

Finally, the tech called Asher in for photos. This was painful for me to watch. He had to open his eyes and then this camera flashed a bright light into them. He would jump every time. He was moving his eyeballs around a lot and closing his eyes a lot, so it took longer than it needed to. Poor kid. I gave him a big hug and told him he did great when she said she got the pictures. He whispered to me, "Do you have a kleenex?" Then he cried a little and dabbed his eyes with the kleenex I gave him. Then he watched the printer print the pictures, which she said was our copy. He was excited to see them. He asked me lots of things and I told him to wait for the doctor to tell us.


Fundus photo - right eye


Fundus photo - left eye

Many minutes later the doctor came in. He looked at the pictures on the computer monitor. He turned around to me and said, "In his craniotomies, did he hemorrhage?" I said, "I don't know. He lost a lot of blood the first one. They had to stop before getting all the tumor out and go in two weeks later. that time he didn't lose much blood." I didn't know what hemorrhage meant, when he asked.... Then the doctor said, "Well this appears to be scarring. We often see this in shaken babies." (Seriously? How do you go from brain tumor, cancer, craniotomy, hemorrhage, nearly died from blood loss, to shaken baby!?) He said it is permanent and he didn't know what would happen with his vision as he ages. He said the reason his central vision is blurred is due to the scarring. He then asked me where the tumor was located and I pulled out some pictures that I brought from the 5/26/06 MRI, which Scott printed at home. "That's some hunk of meat," he said. He asked the gal who tested his eyes if Asher could see better close up or further away and she answered farther away. We briefly talked about the fluid, the optic nerve, and then I showed him a picture of Asher with his left eye going inward. He asked me what the ophthalmologist was going to do about it and I said I didn't know, she sent us to see him. So he said he would write up some notes and get them back to her, and she would probably do some patching to prevent lazy eye.

I'm still so surprised by the different results from three different offices, and different information. I'm tending to believe the ophthalmologist's results, which puts his left eye much worse than 20/60 (and it certainly is not 20/40 as the pediatrician's asst. said). I've watched Asher over the last week....leaning his head to use his right eye over the left when doing crafts or writing, rubbing his left eye after reading, bumping into a wall corner with his left arm/shoulder where the kitchen (well lit) turns towards the hallway, and holding his hand out to the left side of his head making a discussion about peripheral vision.

So, back to the ophthalmologist when Asher can get in....actually, I've decided to see what is said at clinic on 6/24 before paying for another eye doc visit....

I thought today, at the eye doc, was going to go differently than it did. I left with fear....when Asher fell asleep in his car seat, I cried....then I just kept driving, with the satellite radio on a christian music station....till I ended up on the other side of Phoenix and then I decided to wake up Asher to stop at a mall we haven't been to in awhile....

The eye doc didn't see the crossing of the eye (like I do in my photos and the pediatrician did yesterday), but she was very concerned how poorly Asher saw out his left eye alone. The eye chart test showed Asher couldn't see any letters under around 3" in height at a normal eye testing distance....I didn't even ask what he tested at....I don't think I could handle the answer, just yet. She had the nurse dilate his eyes and we waited 30 minutes and then the doc took a look....

The right eye is perfect.

The left eye is not. The (optic?) nerve of the left eye is a bit yellow, indicating now, or at some time in the past, there was reduced blood flow to the eye. Then she went and got a poster of the eye, to explain what she saw. Black spots on the macula of the left eye. She said his peripheral vision is most likely just fine, it is the central vision he is having trouble with.

When she stopped talking, I looked at Asher and he said, "Am I going to get glasses?" I said, "No, I'm sorry honey," and he looked like he was going to cry. I got him outta the chair and gave him a big hug....

The eye doc has referred Asher to a retina specialist; the appointment is next Friday, the 12th. I'll post more then.

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....

-------------

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....

Swimming has started at our home. Two weeks ago I did the grid wash (cleaned the filters and got the tank back together and DE back in), put the solar cover on, balanced the chemicals (turned up the salt chlorinator), and turned the heater on for 82 degrees. The heater only ran for 2 and a half nights (during filtering) and hasn't run since. We had several days of 100 degree temps. Ugh, so hot in April. The water is around 85 degrees in the morning and probably a bit warmer by 5pm. All the kids swam several times. Asher is jumping in off the steps (not the side, yet, this season), swimming on his back, and floating on the raft. The first time in the water, this year, he was hesitant though. Once in he was fine and has been since. He loves the water.

It has been one illness after another around here. Constant nose, ear, eye, lung issues, as well as vomiting and diarrhea. I was feeling a bit emotional about it Wednesday, or was it Thursday....called my mom....could barely talk between my tears. I wasn't feeling too well and A-3 had another fever (third one in two weeks, and after finishing a 2nd antibiotic) and I was just wearing down emotionally, I guess. I also rarely have an adult conversation during the week....barely see Scott when he gets home from work before going to bed. I guess I just needed to let it out and am okay again.

One day this past week, Asher was in the bathroom, standing by the counter, not looking so well when I peaked in on him. He said, with a lot of tears, and two hands on his head, "My head hurts!" My insides panicked, and shaking bad thoughts out of my head, literally, I told him to come in the kitchen, have some Motrin, and something to eat and drink. For the most part, I forgot about it as soon as we sat down for dinner.

I've been struggling with Asher's eating. I thought maybe it was all the illnesses, we have been having. But after three days of not eating a bit of his school bag lunch, I emailed the teacher. She called me the next morning and told me she talked to the lunchroom aide and that she said Asher is very overwhelmed by the noise and people in the lunchroom. She suggested a table in a quieter area, with a few of his friends from class. Scott also started bribing him to eat, giving him "prizes" (little toys).... Whatever it was, it seemed to work. He started eating, but he also started throwing everything in his lunch bag away, so I didn't know for sure what, if anything, he was eating. He got better....but again towards the end of this week, he didn't eat much at all during lunch (he started bringing what he didn't eat home again). I worry so much about his endurance, and his emotional health, when he doesn't eat. So, I think with sicknesses ending here soon, with summer coming, I think things will get much better.

School is out in a month. I'm looking forward to having Asher home all day, again, full time. I'm still not anxious to get Asher involved in outside activities, sports, or whatever. Maybe swim lessons.... I don't know. I like to keep him close to me, still....

I need to get kindergarten registration done for Asher's sister, Alexa. I'm very disappointed, due to funding cuts, that kindergarten will be only half days next year. I was really looking forward to having two in school all day. At least it worked out where Asher was in all day for his first year of school, because he needed it and he has grown so much. Last year, Alexa was teaching Asher most things, and now Asher knows more than Alexa and is teaching her things (the way I think it should be). The principal from school called me the other day and told me that she had a wonderful moment with my son (he read her a story). She said she was impressed with how much he has developed this past year. After I got over the initial fear of the principal calling me, I felt so proud and even shed some tears over hearing that.

Last week I gave Asher a haircut. He looks so handsome. But, a lot of his scar shows after the haircut. Before he headed to school, first day after the haircut, as I was putting sunscreen on the scar, I told him, "Now more of your scar is showing. Someone might say something about it. Just ignore them if you want. OK?" He nodded and seemed fine about it. After school I asked him if anyone said anything about his scar, and he said, "No. Well, yes. One kid. A second grader." "What did he said?" I asked. "I don't know, I just ignored him," he said. I'm pretty proud of him. You know, giving him a haircut gives me a lot of anxiety. I have so much anxiety about him being teased about his scar, that I just don't want to deal with the haircut. This time I even told him I wanted to bring him somewhere, like Great Clips, to get it cut. He said, "No, mom, I don't want to. You can do it." When I told him I was nervous about it and not sure I would do a good job, he said, "You do a great job. You can do it." So, I did.

Yesterday, can't remember if it was before school or after, Asher said, "Mom, when is my next MRI?" I said, "Its in July, so April, May, June, July, 3 months from now." I'm still wondering what he thinks about the MRIs and why he asks, but he does. Now and again, something comes up, about the cancer (although we don't say the "C" word in our home anymore), and I'll ask Asher if he remembers, and he says he doesn't.

Two years post-treatment, two years and one month, actually, and we are all doing well here.

So, I have this shirt. It sits on top of the laundry basket this week.

I had put it on my almost-three year old (girl) two weeks ago. She wore it. I'm not sure if it was part of a day or all day, but she wore it. And, after she wore it, I knew she could never wear it again. And, neither could Asher's little brother. I won't put it on him either.

Earlier this week, I picked up the shirt and held it close to my chest, almost hugging it. It is a shirt, for goodness sake. I put it back, on top of the laundry basket, feeling ridiculous. All week I have taken a glance at that shirt. I'm trying to decide what to do with it.

It is the shirt on my boy, Asher-B, in these photos, from 34 months ago.





The day I dressed him and sent him off to the hospital for a MRI, I never expected him not to come home to me, that night, in that shirt. He wore it till we felt it was too gross for him to keep wearing it, (two days), and we put a hospital gown on him. Then, I washed it. He never wore it again. He outgrew it before he could. I never put it on another one of my children till earlier this month.

I love this shirt.

But, what do I do with this shirt?

I'm not sure I can get rid of it. I'm not sure I can let it go.

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.

Our trip to Minnesota went really well. Tears were shed for Grandpa Jerry, and lots of family got to meet for the first time. Being spread out over the US is always more obvious during times of pain, loneliness, and even times of joy. I'll never forget how I had wished to have family, and friends, around me, in physical sense, during Asher's illness.... Anyway, it was so good to see family, and yet so hard, knowing we had to fly back to Arizona and miss them all again.

While in Minnesota, Scott's and my 9th anniversary passed.

My 2nd child turns 5 this month. Where has the time gone? My oldest, Asher, is getting better at reading the calendar lately. Next week he has no school. Spring break. I told him he has a hearing test, I have a dentist appointment, and he has a MRI. Then Alexa turns 5. Then, he has a field trip to the zoo; Scott is taking off that day and being a chaperon. Asher is very excited about it.

Yesterday was "Road Runner Days" at school. Asher came home completely exhausted. He could barely walk anymore. I don't know what they did all day, but it was hard for me to see him so physically exhausted.

Today I put a chocolate kiss in Asher's lunch. I hope he smiles when he sees it.

Today is picture day at school. I guess they do it in the fall and spring. I told Asher this morning and he said, "I hope I don't fall down. I had a huge egg on my head last time." He then said, "I'm not sure I'm going to smile good."

Friday is two years post-transplant. I'm in awe of how fast time has gone since Asher was healed. I also continue in amazement at how well he is doing. And, while he is doing so well, I still have these feelings.... Maybe I always will. The ones that hurt. The ones that keep me from socializing. The ones that make some days really hard to get through. For some reason, noise is very difficult for me to handle. When Asher comes home from school, it gets pretty loud. Right before bed it gets really loud. My anxiety goes up. I feel like I want to run away. I hate this feeling. I feel like I might need to increase my dose of Zoloft because two months ago I wasn't feeling this way, and now I am again.... I've had so many tears lately, and although I believe tears are cleansing, these don't feel cleansing. I do know, I started feeling much worse after 4-year-old Henry passed away. I want to support other families, who have to deal with nasty cancer, but I am not sure I'm strong enough. I'm not even sure I have anything to offer, anyway.

It is spring. My Chinese evergreen elm, Arizona ash, and Raywood ash trees have new leaves blooming. The Bermuda grass is coming back in. I notice I'm finding a little renewed energy, and I think it is due to the new green in the yard. Winter is beautiful, in Arizona, but I find I have the same 'winter blues' here in Arizona that I had in Minnesota, where it was gray, and snowy, and cold. I don't get it, but it is what it is. The last two days I've spent a lot of time outside, pruning bushes and trees, and it makes me happy.

Time flies. It truly does. Each day is an absolute blessing. I'm going to get back to my laundry, cleaning, and yard work now, and even play with the kids.

Asher had the flu this month, and it was (is) a nasty fever, vomiting, headache, congestion and coughing flu. Then he had a double ear infection, but has finished antibiotics. He seems pretty well again, cept for a little need to blow his nose.

I did get a letter from school today saying Chicken Pox is at the school visiting. Asher has not been re-immunized yet, so, I'm just hoping he doesn't get it.

He's doing okay in school. He's LOVING writing lately! He sounds out words and writes what he wants, rarely asking for help.

Even though we have had so much sickies here, including myself, we are ever blessed with good health!! We are only three short weeks away from 'two years post-treatment.'

I haven't had much of a need to report on Asher, but thought I would update a bit.

Asher is doing well in school, as far as I am concerned. His 2nd quarter report card and DIBELS scores were okay. He has areas to work on still, and I'm working with him, more dedicated now, daily after school, if I can get him to cooperate. Sometimes he is too tired or just 'needs' an hour to PLAY....he is still just 6 years old. He does have daily homework now, and words to learn. He loves to write and he's learning at a really good pace, I think. I'm very proud of him! I've been nervous that he might not graduate Kindergarten, but now, I'm pushing that out of my mind and feel he WILL graduate no matter what.

He is still waking one hour after he goes to sleep. If we get up to him in time, we can rub his back and sort of wake him up right before he would wake up at the hour mark, to avoid the night terror, but sometimes I don't get back up there in time. Last night I got Andrew to bed and had 5 minutes, I thought, to get the dishes going, get the last toys picked up, but I wasn't quick enough and he was crying and mumbling.

Physically, he continues to improve. Every month I see more strength. His balance improves, at a slow rate, but I see improvement!

He's only been getting minor colds, and he did miss a day last week due to pink eye, but otherwise, he's been going to school and really enjoying it.

This month we'll be making a trip to Minnesota to celebrate Grandpa Jerry's life with hundreds of other people. We will be flying and renting a vehicle (one big enough for four car seats) once we get there. I pray for safe travels for us all.

Asher's next MRI is six weeks away. I scheduled it during his spring break from school. It takes place two years post-treatment. I have no worries. His hearing will also be checked that week (we don't think he has any hearing problems, either, it is just part of the protocol). We'll head back to (dreaded) clinic (where Asher doesn't cooperate) at the end of March. I don't think he will have any other tests....I thought they were supposed to check his heart and stuff, but I was told that they don't at this point unless there was a problem previously.

To my beautiful boy, happy birthday!

So this past weekend, Asher hopped on one foot, five times in a row before losing his balance. However, he could not stand on one foot for more than a second; he really struggled with finding a balance point. On the flip side, Asher's sister, who is one year younger, could not hop on one foot more than two times, but she could stand on one foot for a long long time, well over a count to 25.

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.

Spending more time on Facebook. If you use Facebook and want to be friends, look us up.

(Found you Terri and Shanna.)

We received sad news on Thursday. Asher's Grandpa Jerry (Scott's step-dad) passed away Wednesday night. It was sudden and unexpected. He was on a cruise ship with his wife (Grandma Eunice) and son (Greg) in the South Pacific when it happened. Today Scott and I told Asher and the other three kids that Grandma Eunice called and told us that Grandpa Jerry died and went to Heaven. Asher is old enough to sort of understand now. Alexa, not so much. The other two kids didn't understand at all and said nothing. Alexa said nothing. Asher had several things to say right away. His immediate responses and questions were as follows, in this order:


"Why?" (We told him Grandpa Jerry's heart stopped pumping.)

"Yeah, that's what happens when you get old."

"I think Grandma Eunice is going to miss him." (We said, yes, she misses him a lot, as many people do. It is okay for you to miss him and be sad.)

"How did he get to Heaven?" (I told him that in Heaven we don't need our body, we have a spirit, and God brings us to Him in Heaven....that was the most difficult question and I wanted to avoid it but I tried the best I could to answer....)

"I liked playing harmonica with him." (We smiled. What a neat memory he has.)

"Where is my harmonica?" (We told him in his toy closet.)

"He's in heaven now. Is Heaven in outter space?" (I told him I don't really know where it is because I have never been there. He said, "I haven't either.")

"When Grandpa Jerry visited me in the hospital, he didn't die in the hospital with me." (We didn't realize Asher remembered Grandpa Jerry visiting him in the hospital.)


We told the kids that next time Grandma Eunice comes to visit, Grandpa Jerry will not be with her. We will not be able to see him again. (The last time we saw him was four months ago.)

I told Asher that he could talk to his Grandpa Jerry still, because people in Heaven can hear us talk to them. (At least I believe this....I talked to my dad a lot while I was growing up.)

Asher said, "I think we should go visit Grandma Eunice. We can't visit Grandpa Jerry because he died." We told him that Grandma Eunice would be with Aunt Ruth and Aunt Becky for Christmas in Seattle. We told him that we could call her.

Then several minutes later, Asher said more:
"I think I'm going to miss him. I think I'm going to miss Grandpa Jerry."
Then,
"Why did Grandpa Jerry die? I don't think I know."

Since I wanted to put a baby gate around the Christmas tree (to protect it from babies and pets and the babies and pets from it), I moved part of our sectional couch out of the corner of the family room, pushing it up against two other sections of couch, and we put up our tree in the corner. It is beautiful. I like it. I want to keep it up ALL year. Anyway.... So, now there is the high back part of the curved sectional piece kind of sticking out in the room. Asher likes to sit up on it, while he and Alexa play on the computer at the desk. But, he also likes to stand on it and balance and jump off onto the floor below. My son has never jumped off of something that high (3 feet?) off the floor. Mainly because he couldn't do it before. But, now he can. Two weeks ago, or was it last week, anyway, he wanted me to help him on the monkey bars, so I did. But, mostly he got up there, hung from one bar, and then realized he couldn't move to the next bar but was scared to let go. So, I taught him to not be scared. I told him to jump down to land on his feet and when he hit the ground to bend his knees. We have more than four inches (probably almost six inches under the monkey bar section) of rubber mulch under our playground, so I'm not too worried about him jumping down that far. But, I am a bit more worried about him at school, where there is just sand, and a bunch of 'wild' kids, so I wanted to teach him to fall safely. And, he just kept doing it, over and over again on his monkey bars at home. Climbing up, hanging from the first bar, then letting go and dropping to the ground. It was after that, that he started to jump high off the couch sectional, as I described above. Every time he did it, I cringed. Tonight, I started to get mad a bit, because now his baby brother, almost 17 months old, is starting to imitate him. Ah....now my stomach is in knots. Hello. Lets not jump off the couch like that. Asher always did like to run and jump on the couch like it was a trampoline. I did a scrapbook page one time, titling it, "Let them be little" after the song. Andrew is starting to really like to walk along the couch, now, too. Guess that is what I get for buying such a long sectional couch like I did eight years ago.

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.

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....

Here's a conversation while doing 1 1/2 hours of kindergarten homework, at the kitchen table, right after lunch. (Let me add, the reason there was so much homework is I had him do about 85% of the December homework as he was in a good mood and cruising through it so fast. And as of 12/16 he is all done with his December homework now.)

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."

So, I think I have mentioned in this blog before that our son Asher has had sleep issues since he was very young. Mostly since we took his crib away from him at 18 months old and gave it to our 5 month old (instead of buying a new crib). (Note: We didn't make this mistake again the second set of kids 14 months apart; we now have two cribs.) He never stayed in the toddler bed. He always ended up in the king bed. This problem resulted in my not sleeping in my king bed because I wake so easily (and I can be miserable to be around when I don't get enough sleep).

In any case, we went from having sleep issues with our child, to finding out he had a brain tumor. OK. When a kid with a brain tumor lays down, the pressure builds up in his head and he gets a headache. Yeah, that would make me get up and cry and scream and crawl into bed with my parent, too. Although, hard to say, when did the tumor start growing?

In any case, we have never been real strict with Asher about staying in his own bed. I always figure, I just want him to sleep.

Once done with cancer treatment, home, and no more cancer in his head, things were okay. He still woke up in the night and found the king bed. Most nights. Some nights he actually slept in his own bed all night and we would be shocked. In the end, Scott didn't care. I was happy in my own bed in my own room; I didn't care. We're all good.

Now, something new has started, though. Worth noting and now tracking, to see how long this continues.

Monday night, November 17, 2008....this is when it began.

About 50 minutes to one hour after going to sleep, every night, Asher wakes up crying and screaming. When I go into his room, he is crying and screaming uncontrollably. He looks scared. I look into his eyes and I can feel the fear. He is all sweaty, but does not have a fever. After eight nights of this happening, I realized he was asleep, not awake. Any words he spoke could not be understood. One night he even pointed as he mumbled something, eyes as big as they could be. But he can't have a conversation with me. He doesn't seem to hear me or answer me. He shakes a bit. He continues to cry and scream, whether picked up, taken to the toilet, taken downstairs to check his temperature, etc. It does not last too terribly long, maybe only five minutes. And, in recent nights, he is more easily woken and if I give him a drink he goes right back to sleep, instantly. In the morning he never talks about these 'episodes.'

After half mentioning this to a few people, including a nurse at the hospital after his MRI, the term "night terror" was brought to my attention. I've read some on it tonight and it sounds exactly like what he is experiencing, however, not too far into his sleep. About an hour. As for what is causing it, not really sure. However, he has been sick with colds and ear aches/infections, which may have coincided with this starting. Also, yes, he tends to be quite tired by the end of the night, but he goes to bed around 6:30pm on a school night and 7:30pm on a non-school night. He's getting 12 hours of sleep on a school night. I have a strict routine. Especially now that Scott works late into the night, I put the kids to bed and they know the routine.

In the reading I did, it says this can be common in kids his age, and he can outgrow it....that would be good.

Did you watch the Hallmark Hall of Fame show Front of the Class?

I did. Actually, I still am. 30 minutes left.

Good show.

I instantly started bawling my eyes out when a mom told the teacher about her daughter's (secret) chemotherapy....and not wanting her daughter's secret to come out, just yet, because she didn't want her daughter singled out....

Sometimes, I'm still amazed the pain is so close to the surface, that I can cry instantly when touched or faced with my own memories or fears....


It got me thinking, too, that I haven't dealt with the IEP issue. After my conference with Asher's kindergarten teacher, Mrs. B, I just felt it wasn't the right time....


P.S. No, no call from clinic about Asher's MRI....no news is good news, I am sure. One more week till clinic.