HOW WE MET “THE ROBOT KID” – Teddy & Kenny – The Next Step

Monday - 11/14/11 – Our first trip to the hospital in London

http://www.lhsc.on.ca/

We had an appointment with Dr. Anthony Nichols.  He does amazing work with head and neck surgery.  Of course we had checked him out online before we got there and were very excited to meet him.  We did the usual check in. Receptionist was very helpful.  R.N. Sue made us feel more at ease.  I had my rally shirt on again.  Filled out yet another clipboard form.  Met with Sr. Resident  and repeated the same how did you get here story again.  He went out to consult with Dr. Nichols and check the CT Scan / biopsy results from Stratford.  Then Dr. Nichols came in.  He confirmed that we are facing a 4cm tumour on the tonsil and a 2 cm tumour on the lymph node.  That puts Ken in “stage 3” as they grade Cancer.  But ‘just’ into stage 3.  Should that make us feel better?!  Yes.  Better than a 4!  Oh and yes, Mr. Endoscope came out for another visit…but with a little freezing this time!  And complete with a computer monitor for us to watch at the same time!  Unfortunately, we didn’t qualify for the robotics surgery.  There are strict guidelines and based on the size of the tumour it wouldn’t work.  He would also still need radiation (etc.) for the lymph node so the thought was to try to shrink without the surgery.  We were to be referred to the Cancer Program and would hear from them by the end of the week.  He explained chemotherapy and radiation and lots of other information.  I took lots of notes.  And just like last time…we were off to another step.

London Regional Cancer Program:

http://www.lhsc.on.ca/About_Us/LRCP/

Dr. Nichols:

http://www.ctv.ca/CTVNews/TopStories/20110215/lhsc-canadas-first-robot-throat-cancer-surgery-110215/

Next post – MEET THE NEW ADDITIONS TO THE KENNY & SAMMY TEAM

Surgery day

Monday – 11/7/11 – Sorry there is no short version of this day

The big day!  We put on our #Habs rally shirts (another story on its own).  Ken’s brother Trev came for support.  Had to be at hospital for 12:30pm prep.  Surgery set for 2pm.  Couldn’t drink or eat after midnight Sunday.  Not pleasant for Ken who loves water through the night and a lot during the day.  Found out they are only taking a biopsy of tonsil and tumour.  Based on what the CT scan showed, they aren’t removing anything.  A pathologist was on standby to make sure Dr. Conlin took a big enough sample to test.  It usually takes 7-10 days for results but calling for fast track.  Once Ken had his iv in I was able to go back and keep him company.  He looked so cute in his blue hospital ‘hat’ and sleepy with his ‘Ativan’ J.  They took more blood tests.  Apparently his platelet counts were low last time (only 61, normal is 150-400).  Anything around 50 and they wouldn’t do the surgery.  Good news.  They were up to 75.  Again, impressed with the new section of the hospital compared to the old one.  The patient before us took longer so 2pm surgery turned into 3:30pm when they finally took him in.  The OR nurse turned out to be a past client so that was comforting when she took him away.  Thank goodness for texts and BBM so I could keep in touch with the outside world wondering what was taking so long.  Back in the waiting room was a long wait.  Trev, Sarah and Auntie Charm were there to keep me company.  One by one other people waiting left with their loved one.  But no Kenny.  Then we were down to the last few groups.  We were all like vultures when the door would open…mine? mine?  Nope.  Finally 5:15 came (surgery was supposed to be an hour) and Dr. Conlin came through the door.  I was like ‘yeah I can go back now’…but no…she was looking to see me and it wasn’t to take me back to Ken.  She told me Ken had done awesome, reacted well to the anesthetic and was in recovery.  It took longer cauterize the incision because of the platelet count/clotting factor. 

THEN SHE SAID THAT WORD.  "It’s CARCINOMA".  I’m like Woah…what happened to 7-10days to tell me…I’m not ready for this yet!  She gave me a rundown of what to expect in the next few days / weeks.  I comprehended most but it sounded more like the teacher in the “Charlie Brown” comics ‘Wah Wah Wah Waaah’.  She gave me a big hug and I remember worrying that I was stabbing her with my poppy?!

I updated the rest waiting with me in the hallway and made the long walk back to my chair past the other people waiting.  Luckily my back was to them.  Little by little it started sinking in.  ‘Don’t cry…you won’t be able to stop plus have to be strong for everybody else right?!’  I tried texting a few people but it was too blurry through the mist.  The words seemed so cold via text.  Or did they bring it closer to reality?  I wasn’t ready to use ‘that word’.  Amy was on her way up because my ‘I’m fine but the poker face is getting harder’ comment didn’t work with her J.  And then that damn door opened again…but this time I heard ‘that laugh’…and I’m like oh yes…that’s mine!  And there was Ken…looking quite fabulous and his normal chatty self. 

He had to stay overnight because it was late and they wanted to watch for any bleeding.  My girls and I raced (via the stairs thank you Sarah! hehe) to catch up with him.  We were sent to a waiting room until the nurses did their checks on him.  Ken’s Mom was there now too.  Finally, I was allowed in.  In true Kenny fashion he was getting the nurse to order cable and asking for my credit card!  He was enjoying the liquid dinner they gave him (no ‘cab sav’!).  He then says, ‘well that’s round 1 over’.  I thought OMG you don’t know.  How do I do this?  So we had our moment while I filled him in.  The others had their visits and left.  Amy stayed with me until the nurse kicked us out at 9:30pm.  She stayed at our house that night (thank you).  Went to bed hoping to fuzz out the day flipping channels but the stupid cable was out so my ipod had to do.  What a long night.  I missed my ‘pillow’ L

Back 1^st thing the next morning to bring Ken home.  Dr. Conlin was in with him already.  They needed a few days for the lab results to see how fast the tumour cells were growing.  That will tell them how to proceed.  She was going to refer him to a colleague in London who specializes in robotics.  We would also have a team of other doctors, dieticians, social workers etc.  She wouldn’t give us his name until the referral was accepted.  But I was OK…I love google and I’d find out!  Ken’s first request was an egg mcmuffin but wasn’t allowed toast yet.  So off to the grocery store for some yummy goodies.   It was so nice to be home – together.  But how to jump back into the real world that had suddenly changed since we left it last?!  And that’s what we did because that’s who we are!

Next post – HOW WE MET 'THE ROBOT KID' (11/14/11) and we had hopes of surgery!

xx

S

How we got here

Monday - 10/31/11 –  1^st day back to work after returning from a wonderful trip to Jamaica for my daughter Amy’s wedding.  Thought it would be normal day of catching up and putting out fires.   Booked Ken a Dr.’s appointment for 5pm because he had been having a sore throat for a few weeks.  A few weeks earlier he had what we thought were nose bleeds first thing in the morning.  Passed it off to the season changing and dry air.   Second last day in Jamaica he wasn’t feeling well and then spit up quite a bit of blood in the sink…more than the normal nose bleed. 

At the Doctor visit, he noticed an open sore in the back right of Ken’s mouth.  We were given an antibiotic and a referral to Dr. Conlin the local ear, nose throat specialist.  Ken showed Matthew and I his mouth when we got home.  Not a pleasant site or feeling is about all I can say. 

It was Halloween night and we missed our usual excitement of watching the little goblins come to our door.  Ken greeted the remaining goblins after we got home.  Me…I had trouble putting the happy face on to go to the door.

Wednesday - 11/2/11 – Met with Dr. Conlin.  She’s new in town.  Very nice.  She introduced Ken to his new friend Mr. Endoscope.  Nice long snaking black tube with a light and camera on the end.  So up the nose and down the throat she goes checking things out.  Ken’s face was all scrunchy kind of like when the dentist is digging at your teeth.  Pretty much right away she said she would need to do a biopsy to see what we were up against.  At first she thought they may take the tonsil out too but needed to see  CT scan results.  I mentioned to her that it had increased in size and appearance since I first saw it.  That’s when I heard the ‘tumour’ word based on what she saw.  Then things started spinning a little faster.  She was juggling her schedule to get Ken’s biopsy done on the following Monday.  Off we went to get blood work right after that.  Then…boom…had another work appointment and had to put the game face on.  But the whole time my mind was trying to comprehend what we had just been told.  I took a picture of “Teddy” so we could watch what he was up to in the coming days.

Thursday – 11/3/11 – Had to go to the hospital for 9am pre-admit clinic for surgery.  Do’s and don’t before surgery; what to expect; what to bring.  They were scrambling to clear a spot for a CT scan either later in the day or Friday.  Lab from yesterday didn’t take tests for everything on the requisition so off we went to the hospital lab to get more tests.  Oh ya, and Ken hates needles and hospitals…so not quite impressed.  Also had to meet with Dr. Mota the anesthesiologist because of the location of the tumour they weren’t sure how they would insert the breathing tube when they put him to sleep.  And out comes Mr. Endocope for another trip.  Ken’s eyes got really big because it was bigger than the one yesterday.  So Dr. Mota went and got the ‘kiddie’ version.  He liked what he saw and noted that the vocal cords were OK and the tumour wouldn’t be in the way.  The other option would have been to do the breathing tube up his nose and then it would only be a ‘local’ and Ken would be semi aware of what was going on.  Again…Ken not impressed.

Friday – 11/4/11 – Back to the hospital for the CT scan.  We were very impressed with the new section of the hospital it was in.  Our great RE/MAX & community donations going to a good cause.  And this is where Ken had to step out on his own because of course I wasn’t allowed to go in for this appointment.  I was like Momma Lion pacing waiting for her baby to return.  To pass the time and keep my mind sane I started writing a children’s book version of Kenny’s Big Adventure with Teddy the Tonsil Tumour complete with my bad attempt of drawings of the evil Teddy and Kenny the superhero (complete with abs J).  My girls are arguing over who gets the first signed copy!  Oh yes, got some motivational advice from little brother Trevor… “Just tell him to remember Seaforth" … I feel another Kenny story is about to be heard J.  During the CT scan, they inserted dye through an intravenous needle.  They also spun him around and did a scan for his chest.  Then back to Dr. Conlin to discuss the results.  We were impressed that less than an hour later she had what she needed.  She liked that the tumour was uniform and in one location.  The chest scan was fine.  Apparently, there are lots of other cavities in your head where it can go but hadn’t.   Surgery was set for Monday 11/7/11 at 2pm.

So that is the quick version of how we got to my first blog posts. 

The long version includes many texts, BBM’s, emails, visits & calls within our initial support group.  To each of you I thank you from the bottom of our hearts.  You were the knot at the end of the rope I didn’t know if I could hold on to.  I knew you were hanging on for me many times!  Xoxo S

There are also many more stories along the way in this very short whirlwind of a week.  I’ll post them as separate entries because they deserve their own moments.

Next post - SURGERY DAY (11/7/11) – and how we came to hear ‘that word’.  And off we went on the next part of the journey.

Where do I start?

I guess with a repulsive word:

Carcinoma "(Gk. karkinos, or "crab", and -oma, "growth") is the medical term for the most common type of cancer occurring in humans. Put simply, a carcinoma is a cancer that begins in a tissue that lines the inner or outer surfaces of the body, and that generally arises from cells originating in the endodermal or ectodermal germ layer during embryogenesis.^[1] More specifically, a carcinoma is tumor tissue derived from putative epithelial cells whose genome has become altered or damaged to such an extent that the cells become transformed, and begin to exhibit abnormal malignant properties."

Hmmm...translation... "crab-growth" … guess Teddy could kinda look like that!!  Sorry to those who have seen his picture!  Not for a full stomach kind of moment.  I'll spare the rest of you here...for now :)

"The genome is the entirety of an organism's hereditary information." - Sounds like a garden Gnome with a crab suit...that's my new vision of Teddy!

Note to new supporters:  Teddy = Teddy the Tonsil Tumour ... a lot has gone on in the past two weeks so catch up fast.

Next post I shall fill you in on how we came to hear this repulsive word.

Kenny's Journey through Sandy's eyes

11/7/11 - There are many moments in my life when my life changed.  Changed for the good.  Changed for the bad.  But today 11/7/11 my life changed for the unknown.  One would think 11/7/11 sounds like a lucky number.  So on that I hang my hope.

Where do I start…