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.
AND THE LIONS WON THE CUP!   

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.

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



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.

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!!!!

Delayed Intensification II

Interm Maintenance II is finished!  Joel was supposed to have five increasing doses of methotrexate every 10 days but his counts dropped and never really recovered so he ended up just having it increased once and the rest of the doses stayed the same.  He was quite sick thru most of the treatment, he stopped eating for awhile and lost a bit of weight.  He also lost his sense of taste and smell but that has just started coming back.  He was delayed twice during the last set of treatment.  His last two weeks at home were great though and he said that he was feeling better than he has felt in the past year.
Blood counts yesterday were all good, actually they were on the low side of NORMAL!
Hemoglobin - 116
Platelets - 318
White cells - 3.1
ANC - 1.69
Joel started Delayed Intensification II today at 10:00 am.  He began the day with spinal methotrexate, then he got vincristine and doxorubicin thru his port, and he started on the steroid dexamethasone.  Joel doesn't like the feeling of the medication or of being put to sleep so he choses to have the spinals done while awake and alert.  In a couple of days he will get another dose of PEG-Asparaginase and then he can come home again.  He will hopefully be home for about 25 days and he will be having his chemo done in Vernon during that time.   Delayed Intensification II is pretty much just like the first Delayed Intensification except that during the second half he will also have radiation and he won't get the other steroid (thioguanine).
The dexamethasone makes Joel feel very irritable so we all have to be careful not to annoy him over the next few weeks.  He is on it for one week and then he gets a week off before starting it again.  The book says that doing it this way (discontinuous dexamethasone) is not considered "experimental" since it has been used in many past studies; it is being given in this way for subject safety reasons.  I am not reassured when I read things like that, it tends to have the opposite effect on me.   Coming off it is very painful as the dex seems to attack the bones, joints and any previous injury sites but I am prepared with a freezer full of ice packs, bags of frozen peas and calcium supplements.
And Joel will lose his hair again, just when it was growing in so nicely, but this should be the last time.
Just 57 more days until Maintenance.

Why my husband calls me hun.

Okay, first I will show you a few pictures.  And then I will tell you what is going on with Joel's treatment.  And last of all I will share a story about Grant's pet name for me.  Just a warning…. you will need kleenex.

My baby girl is trying to turn me into an Oma in about a month.  

Ari had a fortune cookie tonight.  He really hoped it would say that "a tall beautiful blond woman would change his life".   He was disappointed when it said that "you have all the assistance and luck this month to succeed".  I don't understand my boy.

So about Joel, he was supposed to start treatment again on Wednesday but when he went for blood-work on Tuesday, the results showed that his counts had drastically dropped.  We were kind of shocked cause they had been so high the week before and he has been feeling really good.  They will do more blood-work on Monday and maybe he will be able to start treatment again on Tuesday.  So we are now paused at 57 more days until he is in Maintenance.  We are still hopeful that he will be finished before Christmas.  I am thankful for an extra week to fatten him up.  He has a new favourite food…. chips and dip.  The chemo depletes his body of everything good, especially calcium so he gets some wicked charlie horses.  Last week he had them in both legs at the same time, the one only lasted about a minute but in the left leg it lasted about half an hour.  I give him calcium supplements daily but after last week I doubled the dose. I am currently reading the book "Childhood Cancer Survivors" because I want to be aware of what Joel needs to look out for when this is all done.  It says that often the kid's bones are like swiss cheese after treatment and they need to take extra care not to break them.
Joel is out at a birthday party with friends tonight.  He is feeling normal and is a happy boy.


And now for my sappy story (don't forget the kleenex, grab a whole box just to be on the safe side).

I have memories of my dad calling my mom "honey".  I had an uncle and aunt who called each other "sugar" and "darling".  We lived right beside them while I was very young and we heard those terms of endearment used regularly.  My brother and his wife call each other "babe" and it is just so very adorable.  My sister and her husband always called each other "sweetheart".  I think they still do after many many years of marriage…… I will have to ask her about that later.
So, last week while we were all sitting down to a nice dinner, Grant said "hun, could you pass the salad dressing".  The youngest in the house (just 5 years old) asked the question that none of us has ever thought to ask before.  She said, "Papa, why do you call mama hun"?  He did not say something cliché like "it is because she is so sweet" or something silly like "it is because she is so sticky and attracts all the bees".  But instead, without missing a beat he answered her…. word for word….. I am so not kidding you…… He said, " It is because she is related to Attila"
Needless to say, there have been no more pet words or terms of endearment used this past week.  I wonder if he will dare call me "hun" ever again.

Laughter, the best medicine

I sit down at my computer everyday and I have good intentions about leaving an update but most of the time I just end up walking away.  Maybe sitting down here and writing forces me out of my happy little world of denial.  I also find that it is much easier for me to write when I am alone.  And today I find myself at home with only two kids (instead of the usual 5 or 6) and it is as alone as I will ever be.  The dishes are all done, laundry is caught up and I don't feel like doing all the clean the house chores right now, so I will write.

I looked at my camera today and found it empty, no pictures.  That is not like me but I will take pictures soon and post them next week.  Today I will just write a bit about what has been going on the last few weeks.

Joel and I went to Kelowna on October 3rd for the methotrexate and vincristine.  Joel did not want to go because he was finally feeling normal again so he was a bit grumpy.  It was my first time taking him to Kelowna for treatment, he and Grant had been several times before.  It was a good thing that Joel knew where he was going cause I would have gotten so very lost.  The treatment room he was put into was very pick and it had a strange circus painted all over the walls and ceiling.  We had to wait for a long time for blood work results and then for the chemo to be sent up.  The methotrexate is supposed to take between 15 minute to half an hour to drip into the system.  Then the line should be flushed for a few minutes in order to clear and then the vincristine is given.  After the nurse started the chemo she realized that she didn't have a clamp on the IV so the methotrexate ran into his port in less than 5 minutes.  Joel turned green and then grey and I ran to get him some ice to chew on.  I think the nurse was a little shocked at how quickly Joel reacted.  She flushed his port with a small syringe and then immediately started the vincristine.  It is very handy having chemo done in Kelowna and getting to go home the same day. But I have so much more security and peace of mind when it is done in Vancouver where that is all they do all day and there seems to be less little mistakes made.
Joel got home and went straight to the couch and that is were he lived for the next week.  He has started not eating at all after chemo.  That is a pattern I have seen in so many of the kids going thru this.  They would rather not eat anything and not throw up.   I feel lucky if I can get a small bowl of soup into him in a day.   The dietitian is always after him to at least drink boost, which he can't stand.  She wants me to add cream to all his food, give him whole milk to drink, feed him high fat yogurt and ice cream.  Just the mention of these foods tends to turn him green.
I am not the kind of person who has the television on all day.  I love peace and quiet and would rather have the kids reading, building things or playing outside than sit in front of a screen.  But having something light to watch really takes Joel to another place and lets him forget how he is feeling.  Seeing Joel on the couch, curled up in a ball, with his head on the cushion always breaks my heart.  So I find myself looking for distractions for him that are still age appropriate for everyone else in the house.  I think the boys can all quote every episode of "Corner Gas" and "Mythbusters" is always good for a laugh cause boys just seem to love seeing thing get blown up.  Lately they have been watching the old "Dukes of Hazzard".  Car chases, pretty girls, police sirens and cars flying thru the air…. they really don't think it gets any better.  Personally though, I think that if you've seen one episode, you've seen them all.
I also find that books distract Joel.  He just finished reading "Watership Down" and I also gave him my old copy of "The Sacred Diary of Adrian Plass" which made him howl.
Anyway between the books and tv, he made it thru the week without losing too much weight.  I made lots of pie in order to tempt him.  Once he agrees to eat pie for breakfast, then I know he is on the mend.  Grant and I are both trying lose some weight, actually we are having a contest to see who can lose the weight first.  We are NOT competitive in the least.  He gets very mad at me for doing so much baking cause he thinks I am trying to sabotage him but I am just trying to fatten Joel up.  So then Grant goes out and buys me ice cream bars and chocolate bars which I eat just because they are there.  Sometimes I think it is a win/win situation but really it is a vicious cycle…. but I have a plan.  I will eat all the ice cream bars but leave the boxes in the freezer so that Grant thinks I still have a big stash and then maybe he will stop buying them.  And then I will make lots of fattening food for Joel…..

I totally lucked out with the whole son-in-law thing.  Shane made most of our Thanksgiving dinner including the bird.  He cooked it in beer, which I have never heard of and it was moist and tender.  Ari and Adam were most excited to be eating beer.  Really?  It was all too tempting for Joel who tried eating and the results weren't pretty.  But it was nice to see him be tempted and to try.
I felt my grand-baby have the hiccups and I felt it kick!
After Thanksgiving Joel started feeling a bit better everyday.  He is going to be the best man at Brayden and Brooks wedding next summer!  Thanks Brayden for giving Joel something to look forward to.
I started on all our passport paperwork and we had our photos done.  Joel asked to go to Israel for his Make a Wish.
Joel registered for college this week and will be taking calculus thru distance ed.
Thursdays blood work results were all good.
White cells - 3.1
ANC - 1.6
Hemoglobin - 116
Platelets - 318
Joel will have blood work done again on Tuesday and head back to Vancouver as long as the counts are still good.  I will write about the next set of treatment then.
Ari got onto my library website and ordered every Garfield, Asterix and Lucky Luke book ever written.  I think there were 34 in transit this week.  That was hardly embarrassing, going in to the library and picking them all up.  And that is not even half of what is coming.  Note to self….. get a new library password!
I have not been running, my ankle is still bothering me.  I miss running with all my heart.  Instead I have been splitting wood.  It is a good workout that makes every muscle in my body ache, even the muscles in my toes that I didn't know I possessed. I have also been riding the bike.  I usually go out in the evening, just around dusk when all the kids are settled and my work for the day is done.  But that is when the insects all seem to hover a few feet above the pavement in order to absorb the last fading heat of the day.  And I seem to swallow and ingest a huge amount.   Note to self…. find a different time of day to ride your bike!

My questions for the week?
1. Your ideas for funny books to stock up on for Joel
2. Funny movies or tv shows for Joel
3. Are bugs considered a protein or carbohydrate?  Just so I know my proper calorie intake after a bike ride.

And I will go clean the house now.