It is time, for me to move on from this blog.

Asher is doing well and I need to keep his new healthy life separate from the past sick life.

He currently has MRIs every 6 months, so not often, but I will post scan results under "TREATMENT" (clickable along the top of this frame around the text).

I've gone through and made most of my "feelings" posts from the last two years private so I can read them, if needed, in the future, but I do not want to read them anymore.

The blog will remain up, as a way to reach out to those that may be interested in Head Start clinical trial for a three year old (or those under 6 that do not receive radiation). I am available if you have any questions; just sign the guestbook and I can email you back. I've done this for several people who have emailed me.

Asher's neuropsych evaluation was about what I expected...I don't have a written report, as it was just the parent conference today.

Asher's IQ for three areas was between 92-99, so all fine there.

He's below grade level in a few areas...

One area I remember her saying was hard for him was a shopping list....he was supposed to remember a shopping list, and then even cluster the items in the list into categories (i.e. food, clothes, etc). Then after the first shopping list, he had to remember another one....yeah, that didn't go well.... She said that is a sign that he needs to learn math, take a break, work on reading, take a break, and separate each subject like that in order to process.

Memory even looked good, however, a test that has him look at faces and then asks which faces he remembers seeing was very difficult for him. I asked her if it could be due to vision problems (as she said a similar test that had dots was not as challenging as the faces).

She did notice testing anxiety.

She did not see attention problems.

She noticed he is still shy, but he has matured and had no problem having a different gal in the room performing the tests, even when she left.

She highly recommends I do a 504 plan....even just to address his loss of vision.

Next testing is in two years, I think, and she said she only tests ages 2-5 (she did Asher's as a favor and because she wanted to see how he was doing, she said), so we will be with a different doctor next time.

We should have the full report by the beginning of the school year, early August.

"...medulloblastoma remains incurable in about one third of patients and current treatments can cause toxic neurocognitive side effects."

New Pyrimidine Compounds May Lead to Improved Treatments for Childhood Brain Cancer


"There is still an urgent need to investigate alternative therapeutic approaches that are more effective and have less toxic side effects."

Modified Measles Virus Shows Potential for Treating Childhood Brain Tumors


"Recurrent medulloblastoma currently has a cure rate of less than 5 percent."

Experimental Targeted Therapy Shows Early Promise Against Medulloblastomas, Type of Childhood Brain Cancer

Substance in Breast Milk Kills Cancer Cells, Study Suggests

....Patients with cancer of the bladder who were treated with HAMLET (Human Alpha-lactalbumin Made LEthal to Tumour cells), excreted dead cancer cells in their urine after each treatment, which has given rise to hopes that it can be developed into medication for cancer care in the future....

It was four years ago today they found my son's brain tumor in an MRI. As time passes, and he remains healthy, I remain hopeful Medulloblastoma is gone forever. I worry about the stuff post-treatment, like secondary cancer, organ issues, his eyesight, and infertility (he often says all he wants to be when he grows up is a daddy), but as time passes, I'm feeling pretty good that he is "cured." If my math is correct, per the article, that would be next month: 3 years 4 months + 9 months = 4 years 1 month + 3 years 4 months = 7 years 5 months = mid June

Collins' law. Prediction of recurrence or cure in childhood medulloblastoma?

...day 2 of Asher telling me he has a headache...but he has a cold (snot and cough)...this morning he also said his tummy hurt, but I think he was just overly hungry...just watching him, closer than normal...

update
Asher's first grade teacher called me at 11am, the kids' lunchtime. She said she noticed Asher's eyes fluttering today.... Once I get a hold of my emotions, I will talk to her more about it, probably after school.

Just doing some reading, after my first reaction being - the fluttering is due to his scarred retinas - however I don't know everything and didn't see it happen. Read this on a website: If when he has the eye fluttering he stops his activities and stares, it could represent a seizure. Which is what I mentioned to Annie today when I called her about these things, and of course what put my emotions in instant panic when the teacher called. But, maybe it could just this bad eyesight, especially if he had just come out of the sun and into the classroom (although it a very cool, cloudy day for us today).

update
I talked with Asher's teacher after school and she said Asher was reading in front of his class. It was his day to share his journal. He was standing in front of the class reading, looking down at his paper and then back up at the class, and then back down at his paper. She said all of a sudden he put one hand to the side of his temple, near his eyes, and then both of his eyes fluttered. She said both her and her student teacher noticed it. The teacher said, "Asher, are you okay?" and then he said, "Yes!" He responded immediately and it doesn't seem like a seizure to me. Sounds like a focusing problem....poor eyes.

Anyway....when we were home an hour or so he said, "Br, I'm cold," and sure enough, he had a 101 fever....so I am sure all this crap is just because he's sick!! What a relief!!!

Today around 12:15pm Asher was sent to the school nurse by his teacher. She noticed his hands shaking while reading a book. They had recently come in from recess after lunch. The nurse looked him over, said his eyes were fine and he was otherwise fine, and sent him back to class. She said it could be low blood sugar but she didn't think so because he had just had lunch. I think it was fatigue, most likely, after reading these two websites.

http://wiki.answers.com/Q/Why_do_your_hands_tremble_after_exercise

http://www.merck.com/mmhe/sec06/ch091/ch091c.html

4/20 - talked to Asher's teacher tonight - she said she hasn't seen anymore tremors - she did tell me it was in one hand, she thinks, as he was holding a book with one hand and pointing to a word with his other hand and the whole book was shaking - I'm thinking I don't need to worry unless I see it happen again....

Before I forget, Asher complained his ankle hurt last week.

He had also fallen twice, two days in a row, at school during recess, and scuffed his knees and elbows to bleeding, both days. One day he had jeans on, and still bled through, the next day shorts. When he got home, the first day, he said to me, "But I didn't fall on my face!" Yes! This must be a very good sign....that he can catch himself now on a fall....he has ALWAYS landed on his face/head during his falls (following treatment).

He has continued to walk on his tip toes A LOT, even while wearing shoes, not just bare foot. It used to be that I really only noticed after he was tired, after a full day of school or something, but I seem to notice it whenever now....going to try to keep a better record of it....

Oncology and PT has never addressed this, no matter how many times I have told them or asked about it.

Now I am wonder if he has Neuropathy....

Just started reading about it....esp. this link:

http://csn.cancer.org/node/149876

I may take him to a foot doctor I went to for my flat feet / pain....

4/15 - first thing in the morning, sitting at the kitchen table, Asher says, "My ankle hurts."

4/17 - doing some reading on the toe walking....have I not looked this up on the internet before? Wow there is a load of info, most of which is not very promising, in that the toe walking may be permanent....torticollis....cerebral palsy....Sensory Integration Disorder....idiopathic toe walking....

Interesting though, in my reading, from a toe walker herself, regarding her ankles, "My parents tell me that I've been walking on my toes since I was a baby, way back when I used a walker. I am now fifteen....I sometimes experience sore ankles, but those can be relieved with ankle tensor bandages. I did experience a "clicking" in my ankles when I was eleven, but the doctor said that it was just a tendon clicking against a bone. I am actually faster when I am walking on my toes, and I feel this is my natural way of walking."

In all my reading, I did not find anyone's child with a past brain tumor, chemotherapy, and toe walking....

In my opinion, and I'm not sure I'm allowed an opinion since I'm not a doctor, but I'm still thinking his toe walking is related to his control of his balance. He wore those foot braces back when he was in the hospital and not walking much, and since I wasn't there when he got them (Scott was) I really have no idea WHY he got them, or if they knew he had a tendon problem or what.... Anyway....it reminds me of playing basketball....bend my knees, stick my butt out, stand on the balls of my feet, shoulders wide, elbows out, fingers spread apart some, hands facing inward....defensive stance....balance....

Anyway, sounds like I could take him to a pediatric orthopedist....where they could diagnose him....and then most likely discuss braces, exercises, casts, surgery, or outgrow on his own....

Or I could take him to PT....

I think I'll see what his pediatrician thinks and go from there.

Asher had two upper molars pulled in February 3rd. His upper 6-year molars were tucked under them. We let them grow in a bit more and then he got a space maintainer put on today. He will wear this till he's 12 (about).

Back in January, radiology at PCH said it was no big deal....they have kids with dental appliances all the time....

But, a friend told me this:

"Most of these appliances have at least some stainless steel in them, and although they don't pose a problem in terms of being magnetic, there are still 2 issues: (1) some hospitals won't tolerate any stainless steel to go into the MRI at all, if they make you pass through a metal detector stainless steel will be detected, and (2) stainless steel causes artifacts that will obscure certain areas of the brain."

Interesting reading:
http://jorthod.maneyjournals.org/cgi/content/full/33/2/90

Now to figure out if I have to have the space maintainer taken off and put back on for each MRI....not sure what that will cost us, but at least we are on 6 month MRIs now. And, apparently the hospital radiology team has a website that has all sorts of appliances listed and how they affect the MRIs....so getting brand and other info to them next week....

4/8/10

Talked to the dentist and the lab team today. This is called a Nance Holding Arch Appliance (NHAA). It is made out of stainless steel and nickel and acrylic. Even if we had another appliance made, they can not make the bands out of titanium, only the wire. I've sent this information to radiology/oncology. The dentist will remove the appliance before the MRI (like a day or two) and then put it back on after the MRI (Monday in case of a Friday MRI) for no charge, if that is what we decide to do.

Back to the eye doctor for a checkup today.

20/40 in right eye
20/200 in left eye

everything 'the same,' including any crossing (not worse, not better)

He goes back in 6 months; he'll get drops then.

Asher has always held his pencil between four fingers and his thumb in his right hand. The kindergarten teacher sent a "this is how you hold your pencil" diagram home with him several times last year. I did try to get Asher to hold his pencil correctly, but I felt in my heart that it just didn't matter. 'Heck, I'm just happy he's holding a pencil and writing words I can read,' I always thought. This year the first grade teacher hasn't said anything to me, even though his letters are somewhat hard to read at times (he can be quite sloppy about writing). A couple of weeks ago I set his pencil in his hand the correct way, and told him to try it, but it didn't last. Well, check out this photo! I was watching him do his homework last night and all of a sudden I noticed he was holding his pencil correctly!!! I was so excited I had to get a couple of photos! Today he told me his friend and classmate, Aaron, helped him. Well, whoever did it, yay! I'm just hoping he doesn't find it too difficult to form his letters now and he sticks with it. Three years out of treatment, it is looking like he's going to have some fine motor skills back that seemed permanently gone the last few years.

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)

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!