Real life Clutch 2nd installment

Cap'n Clutch

Cap'n Clutch

Co-Founder

Number of posts : 13873
Registration date : 2008-07-31

Hey all,

I debated putting the title as "A kick in the gut and a punch in the teeth" but figured this would be the better choice.

Bad news potentially. My wife's cancer is monitored with a blood test called CA125 and when it rises it indicates cancer. Her readings went from 15 to 36 to 66 and normal upper limit is 35. The oncologist feels it's likely the cancer is back it's just a matter of checking the scans every couple months until there's visible disease then it's Chemo again. Chemo upon recurrence is not great. ie Kick in the gutt.

Top it off we have EEG results for my daughter indicating seizures. It means referral to CHEO Neurology and likely more testing. Punch in the teeth.

Mon Jun 18, 2012 10:05 am by **Cap'n Clutch** · Mon Jun 18, 2012 10:05 am by **Cap'n Clutch**

My daughter is getting government paid Speach and Occupational Therapy now!!! Still paying for the IBI but getting lots of financial support. One of my brothers and my father-inlaw pitched in enough to give her an optimal amount of therapy at least until school starts.

Good news on the school front too. She starts a pre-school program next week which will be in the same classroom, and I believe, the same teacher, as she'll have in September which is HUGE for an autistic child. Very little adjusting to new surroundings required in this case.

Also she will be integrating into a regular classroom which is awesome news also.

Mon Jun 18, 2012 10:18 am by **Hoags** · Mon Jun 18, 2012 10:18 am by **Hoags**

That's good to hear Capn !

I don't know if you caught an interview with Steve Warne(I think) and Shaun van Allen on Team 1200 but they both have autistic children and they talked about the ups and downs of support for autistic children in Ontario.

Tue Jun 19, 2012 7:35 am by **wprager** · Tue Jun 19, 2012 7:35 am by **wprager**

Didn't know about Vanner, but Warne has talked about it many times on air, in his tweets, and so on. It is amazing how little we still know about this condition. Hang in there, Clutch.

Tue Jun 19, 2012 9:47 am by **SeawaySensFan** · Tue Jun 19, 2012 9:47 am by **SeawaySensFan**

Me and Clutch will be working together soon, I think. I will be his rock.

Tue Jun 19, 2012 12:37 pm by **Cap'n Clutch** · Tue Jun 19, 2012 12:37 pm by **Cap'n Clutch**

Hoags wrote:That's good to hear Capn !

I don't know if you caught an interview with Steve Warne(I think) and Shaun van Allen on Team 1200 but they both have autistic children and they talked about the ups and downs of support for autistic children in Ontario.

I knew about Steve Warne because he does his segment called Adventures in Autism. I didn't know Shaun van Allen had an Autistic child though. Little known fact. Shaun's wife is a pharmacist and works at the Kanata Signature Center.

Tue Jun 19, 2012 12:38 pm by **Cap'n Clutch** · Tue Jun 19, 2012 12:38 pm by **Cap'n Clutch**

SeawaySensFan wrote:Me and Clutch will be working together soon, I think. I will be his rock.

Neat.

Tue Jun 19, 2012 12:42 pm by **Cap'n Clutch** · Tue Jun 19, 2012 12:42 pm by **Cap'n Clutch**

wprager wrote:Didn't know about Vanner, but Warne has talked about it many times on air, in his tweets, and so on. It is amazing how little we still know about this condition. Hang in there, Clutch.

One thing they do know is that Applied Behavioural Analysis is a proven and evidence based approach used to develop programs to help Autistic children. They also know that the optimal window for helping these children is between the ages of 2 and 5.

I'm already seeing some major changes in her communication. Instead of saying "you want tickles" meaning she wants me to tickle her she has actually said "Tickle me daddy" or has said "Pick me up" when she wants up.

Tue Jun 19, 2012 12:43 pm by **Cap'n Clutch** · Tue Jun 19, 2012 12:43 pm by **Cap'n Clutch**

Cap'n Clutch wrote:

wprager wrote:Didn't know about Vanner, but Warne has talked about it many times on air, in his tweets, and so on. It is amazing how little we still know about this condition. Hang in there, Clutch.

One thing they do know is that Applied Behavioural Analysis is a proven and evidence based approach used to develop programs to help Autistic children. They also know that the optimal window for helping these children is between the ages of 2 and 5.

I'm already seeing some major changes in her communication. Instead of saying "you want tickles" meaning she wants me to tickle her she has actually said "Tickle me daddy" or has said "Pick me up" when she wants up.

P.S. We're working on correct use of the language (called shaping) and we'll tackle politeness later Wink

Wed Jun 20, 2012 7:52 am by **tim1_2** · Wed Jun 20, 2012 7:52 am by **tim1_2**

Well this is some good news! Sounds like you guys are doing absolutely everything for your little girl! Good job!

Sat Jul 14, 2012 11:54 am by **Cap'n Clutch** · Sat Jul 14, 2012 11:54 am by **Cap'n Clutch**

Potty training update: Working on 4 days straight with no accidents.

Sat Jul 14, 2012 2:17 pm by **SeawaySensFan** · Sat Jul 14, 2012 2:17 pm by **SeawaySensFan**

Cap'n Clutch wrote:Potty training update: Working on 4 days straight with no accidents.

What about your daughter? Real life Clutch 2nd installment - Page 2 164414

Sat Jul 14, 2012 3:29 pm by **wprager** · Sat Jul 14, 2012 3:29 pm by **wprager**

SeawaySensFan wrote:

Cap'n Clutch wrote:Potty training update: Working on 4 days straight with no accidents.

What about your daughter?

Thunder stolen Dammit!

Sat Jul 14, 2012 7:20 pm by **Cap'n Clutch** · Sat Jul 14, 2012 7:20 pm by **Cap'n Clutch**

SeawaySensFan wrote:

Cap'n Clutch wrote:Potty training update: Working on 4 days straight with no accidents.

What about your daughter?

Wed Jul 25, 2012 1:38 pm by **Cap'n Clutch** · Wed Jul 25, 2012 1:38 pm by **Cap'n Clutch**

Just a quick update:

Wife's CA125 continues to climb but still only suspicious findings on the CT-Scan. Good news is it's localised and surgery is a definite possibility.

She goes for an MRI soon to see if they can get more detail.

Mon Aug 20, 2012 12:46 pm by **Cap'n Clutch** · Mon Aug 20, 2012 12:46 pm by **Cap'n Clutch**

So my little girl is starting kindergarten soon. Just thought I'd update everyone on the situation:

My daughter is actually going to be transported too and from Therapy even though she won't attend school on those days! Fabulous news.
My wife went to an update meeting with my daughter's senior therapist and he told us, in his opinion, that our daughter won't need any kind of supports by grade 1 at the latest. Even more awesome right?

Wife is still in a holding pattern waiting for an MRI while the CA-125 continues to climb. So far no physical signs of tumour growth but it seems it's just a matter of time.

Mon Aug 20, 2012 7:31 pm by **wprager** · Mon Aug 20, 2012 7:31 pm by **wprager**

Great news about your daughter.

I'm afraid I don't know enough about the CA-125 to understand why they are not doing anything now. It's localized, you'd think they could try some radiation. Must be a reason why they are waiting. Although I've had experience a few times where the Canadian Medical community seems perfectly willing to sit and wait whereas their US counterparts keep looking for things to do.

Tue Aug 21, 2012 7:59 am by **shabbs** · Tue Aug 21, 2012 7:59 am by **shabbs**

Great news Clutch.

Tue Aug 21, 2012 9:24 am by **tim1_2** · Tue Aug 21, 2012 9:24 am by **tim1_2**

Good news about your daughter, and hoping for the best for your wife!

You guys are awesome, keep your head up!

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