Lets define it....

Post-traumatic stress disorder (PTSD) is an emotional illness that usually develops as a result of a terribly frightening, life-threatening, or otherwise highly unsafe experience. PTSD sufferers re-experience the traumatic event or events in some way, tend to avoid places, people, or other things that remind them of the event (avoidance), and are exquisitely sensitive to normal life experiences (hyperarousal).


I've never defined my emotional illnesses before, because let me face it, I don't want to be defined.

But....

After Katie and Dr. Etzl left the clinic appointment room, the social worker was still there and I said, "I need to talk to you about my emotional problems...."

Instant tears.

She listened, as I shared some of what I have already shared here in this blog and she said, "Yes, post-traumatic stress, it can do that."

"Is this normal? How do I stop it?"

THAT is what I wanted to know. I'm emotionally DRAINED of feeling low, crying, having flashes of the time my son was ill, avoiding people, not being able to focus on tasks, and not being able to find anything that I enjoy.

We talked about how I had been on Zoloft instantly following Andrew's birth, because my OB/GYN said my uncontrollable tears was "post-partum depression." When she refilled the Rx a year later, she wrote "PMS" as the reason. Well, I didn't want to ask her to refill it again, because I am not one to like lying, and I knew in my heart what I was going through was not PMS. So, I decided I was going to stop taking it, and I did just that, six months ago, at the end of August.

I find that I talk to myself a lot, in my head, trying to encourage myself to get to the next task, to set a goal (or if I'm really having a good day, goalS). Focus is a challenge for me lately. Why the fog?

I thought once my son was healthy again, we could go on....in a NORMAL fashion.

I've heard so many other families talk about "new normal."

That's just it....the further away from treatment we get, the more I hurt. The more anger (hostility) I have. The more frustrated I get that I feel this way because look at my son. HE LOOKS GREAT. I SHOULD BE SMILING ALL THE TIME! NOTHING SHOULD HURT ANYMORE....

But it does.

During treatment, I felt so much prayer and love and I think that is what got me through. Now I just feel lonely all the time, and any groups of people put me into an anxiety spin. Avoidance is scary, but allows me to function.

Post-traumatic stress sucks and I've got a few ideas of ways to start HEALING MYSELF.

I did think about deleting this blog as a form of healing myself, but I know it reaches people. Doctors, nurses, students, and other parents. They have sent me messages. I heard this website gives HOPE to people. And, I want that. I want everyone to know that there is ALWAYS HOPE. Always....hope is the most beautiful thing in the world....I remember how it made me feel happy during treatment. I think I smiled more during treatment than I smile now. That's kind of sad, but that also shows you how beautiful hope and prayer and love is....


I heard there is no solution to this, post-traumatic stress disorder, but I'm determined to be drug-free and alive and HAPPY. And, I know only I can change myself....I have HOPE for a happier me....

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

WBC=5.4 (norm 4-11)
RBC=4.45 (norm 4.3-6)

Hemoglobin=12.5 (13-18)
Hematocrit=35.8 (40-53)

Platelets=320 (130-450)

Segmented neutrophils=34 (40-85)
Lymphocytes=45 (10-45)
Monocytes=13 (3-15)
ANC=1830 (>1500)

Sodium=136 (135-145)
Potassium=4.3 (3.5-5.2)
Chloride=103 (96-110)
CO2=23 (19-31)
Protein, total=7.1 (6-8)
Calcium=9.7 (8.7-10.5)
Bilirubin, total=0.3 (0.2-1.3)
Magnesium=2.1 (1.7-2.4)

Creatinine=0.54 (0.6-1.5)
BUN/CREAT ratio=25.9 (10-28)

MRI day comes so soon now. It had been four months since the last MRI, and it sure didn't feel like that long. Asher had no school today; it was teacher in-service/conferences day. We were out the door at 6:15am and at 8:25am he was in MRI. Before he went in, the nurse was talking about the IV (which would go in after he is asleep), labs, and mask.... Asher interrupted and said, "I already know all this. I want the IV in my foot." The nurse asked him if he wanted to stay after his MRI to help the other kids understand what will happen....he said no. He is a bit funny about it. Yesterday he had told me he liked his MRIs because he liked being put to sleep. It made his hands and feet and legs feel funny.

After Asher went in, I did my typical hospital routine....bathroom, cafeteria, back to surgery waiting to eat my eggs and potatoes, drink my mountain dew, stick my ear phones in and listen to some Christian music from my Ipod. And, as usual, I did a little people watching. I do try not to do this, because what happens when I see other moms with red, tired eyes, is the memories flood back.... So then I get out the Nintendo DS and played a little game.

Annie came by, saw me, and sat and chatted a bit. That was nice. One thing I had been thinking about is the anesthesia and when they will stop giving it to Asher for his MRIs. It would change the MRIs quite a bit for Asher. She said she has older kids who still have the anesthesia, so not to worry about it. I don't like him being put to sleep, but I know he does and it makes the day go a lot easier for him, thus me.

Dr. Maze was his anesthesiologist today. After the MRI was done, 1 1/2 hours later, he came out and said he hadn't recognized Asher at first, until they got into the MRI room. (He was our very first anesthesiologist at PCH....) He said Asher looks good, and is so sweet. He said, "How are you doing?" and gave me a hug! OK, I'm doing okay.

Asher woke up from the Dr. Maze cocktail typical of the Dr. Maze cocktail. Quiet. Slow. Dazed. Not emotional, crying or angry, like he does from the other anesthesiologists' drugs. If they could all do it just like Dr. Maze.... The nurse said to me, "I don't know Asher, but several others here do, and already came to check in on him." Asher said, "I want to go home." He's too big for a stroller now (see me pout, I can't carry him or put him in a stroller anymore), so I had the nurse get the wheelchair and bring him out while I went to get the van. When I left the hospital to get to the parking ramp, at a rather brisk pace, a poster/banner around the new hospital construction area caught my eye, scribbled in a child's handwriting, "I love the hospital because they are saving my brother."

Instant tears....

I picture 2-year-old Alexa feeding Asher a cheeseburger in the hospital bed during chemo round 1....

I love the hospital, too, because they saved my son. And that hurts to say and makes me tear up in an instant.

Last month I read a book to my kids before bed, "Chipmunks Christmas." The story was about Alvin gifting his harmonica to a sick little boy who couldn't get out of bed. Each time I read, "sick little boy," I had to pause and swallow extra hard so tears wouldn't start falling. It was a challenge to get through it, and I felt drained when I was done reading it.

My aunt passed away in January. She had breast cancer 10+ years ago and it metastasized to the bones and it took her life. I went up to my uncle, at the visitation, and said, "I'm sorry for your loss," hugged him, and he looked at me, and with a slight nod said, "I still pray for Asher. How's he doing?" I could barely muffle a "Good" in there, as I was about to bawl my eyes out.... But I choked it back , wiped the tears away with my fingers, nodded, and moved away. The next day after the funeral, at his home, he said, "I have Asher's prayer bookmark in my Bible and when I see it, I pray for him. I see after yesterday it is still so fresh and painful for you."

I do wonder, when will the pain gooooo awayyyy already, so I don't have to cry at an instant? Next month we are 3 years out from treatment. THREE YEARS. It is time for this not to hurt me anymore. Stupid cancer....

Anyway....

No results on the MRI.... Annie did tell me that never assume "no call is good news." She said call after a few days if Dr. Etzl doesn't call us if we need to know, otherwise we'll get the results at clinic, later this month. Monday I have to take Asher back to the hospital to get his hearing checked. All part of the clinic trial; I have no worries about his hearing.

Oh, and one other thing.... Good news. Scott's new job, has awesome insurance which covers MRIs and anesthesia for the MRI 100% (as long as we are at an in-network hospital, and we have EPO and not PPO, so we have no out-of-network coverage anyway, so....). Can you believe that? I have never heard of 100% coverage. Ha! So we thought we had to pay $2000/year just for Asher, like we had for the last 4 years, and we put $2000 in the flex plan (along with another $1600 or more for the other kids and Scott and me).... Ha! Jokes on us. Next year we can start saving ourselves $2000/year! And, now I can start letting go of the anger I have about cancer costing us financially, too....

Gene Mutation Linked to Poor Survival in Children with Medulloblastoma

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.

Every day, 9 children are diagnosed with a brain tumor, 4 of whom will die within 5 years of diagnosis.

Here are some things you can do this month to support Childhood Cancer Awareness.

♥ Tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer.

♥ Donate blood: givelife.org

♥ Dine at Chili’s on September 28, 2009, when they will donate 100% of profits from restaurant sales to St. Jude Children’s Research Hospital: createapepper.com

♥ WEAR GOLD FOR THE KIDS: cafepress.com/teamunite

♥ Register to become a bone marrow donor: marrow.org

♥ Offer to volunteer at a local childhood cancer center (if you are healthy and have not been exposed to any illness).

♥ Join Team Unite to become part of a unified voice against childhood cancer: teamunite.net

♥ Join People Against Childhood Cancer (PAC2) to learn of efforts being made around the country to find a cure, raise awareness, and lend support: curechildhoodcancer.ning.com

♥ Let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles....believe it or not, the struggles stay within us for a long time after the struggles end....

♥ Let a family of an angel know their child remains in your heart....send a card, sign their guestbook, tell them a memory you have....

♥ Sign the CURE CHILDHOOD CANCER petition (and ask your friends and family to sign, as well!): thepetitionsite.com/1/CureChildhoodCancer

There hasn't been much to report....health wise, Asher is just fine. His next MRI has been scheduled for October 8th, at 8am, and they said it is brain and full spine (yay for full spine - I'm glad they are doing it). This falls during his fall break from school, so he won't miss school this day. Clinic will be at 2:30pm on October 28th. I'm disappointed they couldn't give me a 3:30pm time so I don't have to pull Asher out of school an hour early, but oh well.

Tomorrow ends a full month of school (Friday he has off). Asher attended first grade every day, all day, with no tardies. He did have two colds. The first one he got on the third day of school and I had a few rough days of dragging him to the car so his dad could get him to school. He went through almost two weeks of crying every day he arrived at school. He's a sensitive boy and he did tell me, "I just wanted you." Change is hard for him. And, when he doesn't feel well, even with 'just a cold,' everything is that much tougher for him. But, I am proud of him. And, I'm rewarding him for a full month of school with a toy from Walmart. He is working hard, doing awesome, and his teacher says she is very proud of him. He hasn't had homework yet, but daily homework begins next week!

Scott lost his job, after 10 years there, in early July, for really stupid reason(s), and things were emotional for me. Ha, aren't they always. Anyway, all is fine. We are paying for COBRA so the medical benefits remain in tact, and this week Scott started a full time job where he will be eligible for their medical plan starting November 1st. Prior to this week, he had a good contract that paid hourly, for a month. The economic stress of our society is evident to me every time I walk or drive in our neighborhood. There are dead plants and trees, dead lawns, overgrown weeds and For Sale signs, all over the place. I'm thankful for my husband's good friends, contacts, and employment, because when he lost his job, my first thought was not, "I'll lose my home," it was, "What if we can't afford to get Asher's next MRI...."

Still praying for our friends who battle cancer today, and for our friends who are missing their child, sister, brother, grandchild, ....

I am up early....showered....reclined and peaceful. I'm sending 2 kids off to school for their first day of Kindergarten and 1st grade.

There are so many times I long for time to stand still....but it never does....guess that's a really good thing as life is changing and I'm growing....I hope for the better....

I have so much fear, still. Fear is my enemy. I haven't invited it in, but it comes anyway....maybe that is because I am human and real....maybe that means my Faith isn't strong enough....


Today I'm going to do something that matters. I'm going to kiss my kids when they go off to the school bus and tell them I love them and am proud of them.

Today is going to be a great day.

I picked up Asher-B's glasses today. He likes them. He's very proud of them.

The patching....not going so well....he rips the patch off whenever I put it on him.

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....

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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....

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.

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.