Wednesday, November 30, 2011

A Year Ago

Exactly one year ago Joel and I drove down to Children's Hospital.  What I remember about that day is what fun we had on that drive, how we laughed and how he was at peace.  The roads were clear and it was a sunny day.  Children's hospital called the cell phone while we were driving trying to set up arrival times and appointment for seeing specialists.  I remember how overwhelmed I felt as I drove into Vancouver, tried to figure out how the hospital parking worked and got lost in such a big ho.  The rest of that day and week was a blur.   Today I find myself totally surprised that a whole year has already passed.

The football game was amazing and loud.  It was a once in a lifetime experience for me.  The stadium was packed and the excitement was contagious.  The roar of the crowd was unbelievable.

So I thought I would post some pictures of the radiation room.
The big machine behind Joel is what administers the radiation. 
It looks like something out of a science fiction movie.
It spins around so it gets both sides of his head.

Here the girls are attaching the mask to the table so that Joel cannot move.
When he is finished he has criss cross marks all over his face.
The actual radiation procedure doesn't take very long but it takes awhile to get him in the exact right position.

The girls told me to turn off the flash so that all the lasers would show up in the pictures.
Joel gets to keep the mask and bring it home when the radiation is complete.

Joel was given 2 tickets for the Canucks game on Tuesday. 
I told him to take his Uncle Stephen.
Then I invited Stephen over for supper and I made him butter soup and crepes.
(Note to Wendy and Rachel....
I am so winning sister of the year this year!)

I drove the boys to the game and came back to RM House.  Then I settled down for the evening, I was going to relax, watch the game on TV and then drive downtown to pick them up later in the evening.
Just as I was sitting down, I was called down stairs.  One of the Canucks wives dropped off three more tickets for the game and did I want to go......
Yes! so I drove back downtown with one of the other moms and her son.
We sat right behind the goalie, 11 rows up from the ice.
Fin stopped and posed for me so that I could take a picture.
See the people way up in the balcony to the top left of Fin's head?
That is where Stephen and Joel were sitting.
I texted them and told them where I was sitting and then we waved to each other.
At least I think that is who I was waving at..... it was too far away to tell.
Anyway, the moral of the story is,
It SO pays to give away your hockey ticket cause then you get to sit really close to the ice. 

This week there are no meals at RM House.  Joel is starting to fight the nausea and is not very interested in eating.  But today we did make apple pie for everyone in the house and Joel managed to eat a piece with some ice cream.

Sunday, November 27, 2011

Joel's an Uncle

Sienna Marie
Born November 27th at 9:30 am
7 pounds 2 ounces
Lots of dark hair
We can't wait to meet her

Saturday, November 26, 2011

Making Grant Jealous

This was a bumper sticker we saw on the way down. It made Joel laugh.

Monday November 21
Joel went for blood work.  His counts were too low for starting chemo Tuesday but we headed down to Vancouver anyway cause radiation was starting.  The roads were all great.  We stopped at Rachel's for a quick supper.  When we got to Ronald MacDonald House there was another supper being put on by the wives of the Canucks.  Homemade vegetarian lasagna, homemade shepherds pie and two kinds of salad.  Yum.

Tuesday November 22nd
Joel went for blood work at Children's to check his enoxaparin levels.  They were a little high so we lowered his dose and he will have them checked again in another week or so.  SOS (students from UBC) put on a Mexican dinner with cheesecake for dessert.  Yum again.

Wednesday November 23rd
Joel and I went exploring in Vancouver and got so lost.  We had lots of fun and were not worried..... I love my GPS!  Radiation started.  I will try to get a picture of Joel in his mask and on the table next week.  It looks like something out of a science fiction movie.  He had side effects that night; headache, nausea and he was very tired.

Thursday November 24th.
Joel had a check up with David Dix and more blood work done in the morning.  Counts have come up (White - 2.6, ANC - .96, Platelets - 234, Hemoglobin - 131) so he will start chemo tomorrow.  We talked to him about how shaky Joel is now and he will keep an eye on it.  Otherwise everything is looking good.  Another radiation appointment in the afternoon.  And then we were rear-ended on the way back to RM House.  No damage to the car and no injuries.  Joel was excited cause it was the first accident he had ever been in...... really?  Got back to RM House to another meal, this from Worksafe put on by an amazing Romanian family.  Chicken, sausages, cabbage rolls, salad, pollenta, roasted potatoes, bread, dip and a very yummy chocolate cake.  Side effects from radiation were not so bad today, Joel was just super tired.

 Joel and I went to the Naam for lunch.  He ordered chili but couldn't eat and I had the dragon plate.
 I ate all of mine!
 Friday November 25th
Chemo started at 8:00 am. Just two today, the cyclophosphamide and ARAC.  The spinal is being held until the radiation is finished just so it doesn't aggravate his brain anymore than necessary. Joel was given 2 tickets to the Canucks game on Tuesday.  Long day at the hospital but a bunch of football players came thru and said hi.  Chemo was done just after 3:00 pm.  When we got to the car it had a free parking pass on it. Then it was off for another dose of radiation which went well.  At RM House two tickets to Science World were waiting for us.  And there was another family dinner put on by volunteers.  Chicken marabella, rice, peas, salad and snickerdoodles.

Saturday November 26th
Joel slept till 10:00 am.  He is getting super tired.  Chemo at the hospital at 11:00.  When we got back to RM House, someone from a Railway company had dropped off 2 tickets for the Grey Cup game tomorrow.  All the kids names were put into a draw and Joel's name was picked.  He said he would take me to the game with him.
And now Brianna has gone into labor......... we will keep you all posted.
I am going to be an Oma!
I have the best kids ever.

Sunday, November 20, 2011

A Month of Blessings

Sorry for my long absence.  I have been in my world of denial.  This has been a hard month for the whole family but I think we are all doing better now.  Everything just seemed to hit at once and we were all feeling tired and worn out.  I have been healthy since Joel was diagnosed almost a year ago but at the beginning of the month my body decided to give out on me.  I guess it has just been too much physically, mentally and emotionally.
So there I was, sick and tired with my brain in a huge fog.  I kept forgetting everything that I was supposed to do.  In the kitchen, I made two nice big stovetop fires; it was not a pretty picture.  And that is when the Church care groups decided to bring us a hot meal every week for the next few weeks.  We have had two amazing meals so far and there was so much food that we had another meal just of leftovers.  Joel and I are leaving for Vancouver tomorrow and for the next three Wednesdays, Grant and the kids will get a nice hot supper.  We really have the most amazing Church family.

This month….
Adam turned 12 and had a great day with all his friends.

 Grant trimmed all the trees.  I told him "less is more"  as in, the less you take off…. the more effective it is.  He understood it as, the least you leave on the tree… the better.  Anyway, he tells me it will look great in the spring.  We will see…..

 Adam built and launched his rocket.  The first time it went off without a hitch, the parachute opened and the top half landed on the roof of the pole barn.  The second time the parachuted didn't open and it landed about 2 feet from Grant's truck!!!! Time to build a new rocket, and next time it gets launched WAY out in the field. 

 Brianna was very happy to have Shane home for a weekend.  She is due on the 22nd.  I told her she can have the baby tonight or else she has to wait until Joel and I get home in December.
 Joel has been doing as expected.  His hair all started falling out this week and Brianna buzzed all his hair. The dex affected him as we expected, he was irritable and emotional but he didn’t complain.  His appetite went way up.  He would eat breakfast and then have a box of mac and cheese, a snack before lunch, lunch and then another box of mac and cheese.  Supper was much the same and then he would eat more pasta before bed.  Coming off it was hard.  The side effects were insomnia; vivid dreams when he could fall asleep, lots of pain and trouble walking.  The x-rays showed large white areas in his bones but no one really knows what they are or if they are normal at this point in treatment.  He is not allowed to take Tylenol or Aspirin because they mask a fever.  The codeine doesn’t seem to help at all with the pain and he doesn’t like taking the morphine because of the side effects and hallucinations he would have all night.  So I almost burst into tears when I ran into Deanna at the Shuswap Health Food store and she told me about Curamin (from tumeric).  Joel took two pills that night and slept a solid 9 hours.  She also lent me an amazing book to read by a doctor who practices in Victoria and gave me a list of options to Google.
Joel was given a truck on one of his hardest days.
Jim, I don’t know how to thank you.  You made Joel’s face light up and you took his mind off everything he was going thru.  He could barely walk up the stairs and couldn’t drive that day because the pain in his hip was so bad but that didn’t matter.  He was so weak that he couldn’t even open the door to the truck by himself but that didn’t matter either, he still wanted to get up and just go sit in the drivers seat and make plans for when he was feeling better. 

 The people where Grant works also had a raffle and gave a very generous gift.  So glad you won Brandi!
 I got the baby's quilt done.  So you it can arrive any time….. hint, hint.  No pressure Brianna. 

Anyway, I just wanted to say a big thank you to everyone.  Thru all of this each one of you has been a constant support.  We have never felt alone.  We have felt so many people sharing in Joel’s battle and cheering him on.  It has not gone unnoticed.  And thru our darkest days we have also never felt so blessed and supported.  Thank you for your prayers.  We have the best family, friends, neighbors and Church family that anyone could ever ask for.

So the plan for this week is….. Monday, Joel goes for blood work and we head down to Vancouver.  If the counts are good he will start chemo on Tuesday.  Radiation starts on Wednesday.
31 days to go until Joel is in Maintenance, I think December 21 is the big day!!!!