Happy 7th birthday to my boy! Every birthday with Asher feels like a huge miracle and makes me bawl my eyes out!!!

Took some pictures real quick before he headed to the arcade with his dad....couldn't go as a family because the little ones are too sick....so I'm a bit sad, as I had planned to take him to Disneyland....oh well....this will do....I know he's going to have fun with his dad today.

To my beautiful boy, happy birthday!

I think I would always have done everything I could to save my son from the cancer in his brain.

But, when I look back, as we are now just past Asher doubling the age he was when he was diagnosed with cancer, I question how everything happened in front of me. Around me. As if I was just a bystander. When I think back now, it is as if I am watching a movie of myself, .... and I judge myself, now.

Why is that mom just sitting there, not talking, numb, not having an opinion, not fighting, not asking questions, not doing research, not trying to understand technical terms? Why is that mom crying? Why isn't that mom crying? Why is she crying, ALL THE TIME? Why is she angry, losing patience, and not down on her knees praying? Why did it take almost five months for that mom to stand up, learn some medical terms, learn some medical procedures, and fight for her son's healing?

And....

Why, now, do I start to lose my breath at just a second of a memory of that time? Why do my eyes swell up with tears, as I gasp for breath, and hold my breath, and then tell myself to let my breath out s-l-o-w-l-y, as the tears slowly drop off my cheeks?

I'm still struggling, with the thoughts and feelings....mostly quietly, alone, and not sure where to go with all that I feel....

To be honest, I don't write much here anymore, because I feel so damn bad. So many kids have died. NOTHING I feel matters, because Regina died, Charlie died, Alexa died, Henry died, Michael died, Jace, Stash, Coleman, .....

So, I carry on.

I nod my head, just ever so slightly when the doctors look at me and say, "He looks sooooo good."

I remember when he looked so good, when he was 1, and 2, and then three, and then, I guess he wasn't. BUT WHEN WAS THAT? When did he start to not look so good? When did this cancer start growing?

That is weird that I wonder this? But I do. I don't want to get too comfortable . I want to be the FIRST to SEE the monster IF it comes back.... But last April and May his left eye turned inwards and I wasn't the first to acknowledge it. So, either I won't be the first because I see him every day and won't see the obvious, or IT will be too small to see an effect, so the MRI will be the first to see it....

That's why we go, to the MRI as often as we do. They (the doctors?) figure if IT comes back, we need to catch is early, because recurrence is often deadly, deadlier than initial diagnosis....

I wasn't reminded of these facts today, at clinic. Dr. Etzl wasn't there. It was a group of all women, today. Asher was looking forward to seeing Dr. Etzl, though, and I saw the disappointment, in his face, that he wasn't there today. But, he participated pretty well, and was proud to show off his balance and strength. It was also the first time he had his glasses, at clinic. Apparently, the full report of his damaged retinas hadn't made it to the whole team before today.

So, I guess I wasn't reminded, verbally, today, that cancer can remain invisible and cancer can do what IT wants WHEN it wants to, but I know it, in my heart, and in my mind. And, that is what is hard about going to clinic. Because I have to hold my breath, and try not to remember, to keep the tears from falling, because, it doesn't matter. IT is the past, and IT isn't coming back, and I can give myself a break, because I did the best I could, back then. No one is going to write a movie about me, and I won't have to watch it any time soon, so I need to turn my mind off and go to bed and pretend it didn't happen so I can FEEL happier tomorrow....

Asher-B was born 1/03
Asher-B was diagnosed with cancer on 5/06, at 3 1/4 years old
Asher-B is the strongest he has ever been on 10/09, at 6 1/2 years old

And, today, I still struggle to say, "THANK YOU GOD," because of something in me, about that, and my faith, makes it weird. Thinking about it though, I do whisper it, "Thank you...."

Someone asked me, in a private guestbook entry to this blog, about my faith, and how my beliefs got me through.... Have you ever tried to WRITE what you believe? Share your faith? I'm working on it, and maybe I can share, some day....

Asher does look remarkably well. I was told today, by the neurosurgeon's assistant (OK, I really need to know what to call her....I'll just call her Katie), that THIS is the best she has ever seen Asher. She also said, "It is almost like you can't tell we were even in there," while looking at the brain MRI. Apparently the brain is healing itself, well, ....?

Oh, and one last thing, they highly recommend the H1N1 vaccination, for Asher, for our whole family....

So, that's it, until four months from now....we carry on....we try to find REAL MEANING in life as we carry on....it can't really be as simple as simple is, can it?

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.

Couldn't believe it had been three months already, since the last eye checkup. So, back we went, today, after school. The eye doctor said his vision is 20/20 in the right eye and 20/200 in the left eye (slightly better than 20/400 three months ago). She said his eyes are aligned well. I did tell her I saw his right eye cross in some, but not recently, and she said it was probably due to the patching. We had done some patching right away, but once school starts we just gave up. She said try to do some patching on the weekends, at least, but she isn't going to push. Asher has physical limitations in his eye (the retinal scarring), so we just don't know the extents of those limits, to his vision, or how things will change. He loves wearing his glasses and pretty much wears them all day while he is up; the doctor was content with the protection that his glasses will give his good eye. Next eye checkup is in 6 months....although we will have to see what our new health insurance will cover. I certainly want to keep going to Dr. Peters; I respect her.

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.

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....

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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.