Friday, February 25, 2011

What I got

During my three weeks with Joel in Vancouver I got him all shades of green and weak in the knees.  I had to bribe him with smoothies in order to pry him out of his bed.  We also got lots of rain and snow.
But this month….
Grant gets to take him for bike tours through Vancouver.
It is sunny and beautiful out.
These are the beautiful paths they bike along.
Today they biked to Granville Island.

They get to bike past beautiful houses like this.
Joel is doing so well this time around that he has been biking from RM House to the hospital, getting his chemo treatment and biking back home after.
They get Canucks tickets next week. 
Joel is not green and he has not thrown up for Grant once.  He is just happy and adventurous. 

Here I am at home.  It was -20 this morning.  The vacuum broke and I got to fix it.  The front door handle fell off and I got to learn how to install a new one.  I got a family of woodpeckers trying to build a new home in my house. There is a leak under the kitchen sink but I am not gonna get to fix it.  I AM NOT! I am going to pretend I didn't know about it and let Grant fix it when he gets home next week.
I am not bitter though cause I also got chocolate in the mail and a girl can't be bitter when she gets chocolate in the mail.

Sunday, February 20, 2011

Our Many Adventures Here In Vancouver

Ok, so it's me and dad down here in Vancouver right now.  Treatments are pretty much the same this month as it was last month.  Yet so far it hasn't hit me near as hard which is quite nice.  I'm still a little naucious at times but not too bad.  So this go round I'm actually a lot more cheerful, poor mom (she had me last month when I was rather sick and miserable).  Dad timed it pretty good aye?  Anyways, we've been exploring Vancouver a little more these last few days 'n we took a few pictures for your enjoyment! 
Here we are just outside of Science World (I think that's what it's called).  We had heard it was partially under construction.  We found out when we got there over 80 percent of it is shut down and it was $15 each just to get in!  We skipped the Imax (five more bucks each) for when the rest of the family comes down.
Me and dad have been trying to join in the true spirit of Vancouver.  As artisticly captured here by dad's amazingly artistic picture taking skills.  I'm jammen on a tin whistle we bought at a music store just up the road.
Here we are on the edge of Stanley Park with massive barges in the background.  And me looking so darn sexy!  (hehe)

And these are some other cool pics we took.  Me and dad also stopped at a restaurant Gypsy Rose; Crepe Cafe.  It was good!  We both split a ham 'n egg 'n cheese crepe and a beta cheese crepe with walnuts and maple syrup.  Man those were good (not as good as yours though mom!).  Saw a bit more of the sun this week which has been great.  We even ate the crepes outside!  One nice thing about Vancouver, early spring.  When I first came the big city seemed just weird and messed up, who in there right mind would want to live here.  Starting to get used to Van now though.  Still think they're nuts for living here though.  As far as cities go Vancouver is a beautiful place.  But my heart's still in the country.  Yet this is an adventure, another step in a long journey dedicated to the Man updoors.  Christ reigns forever and His love shines forever and always!!!

Tuesday, February 15, 2011

February 15

Well, I'm alive and well, which is always nice! Had a good trip down and counts are up meaning we were able to start treatment. So I'm currently sitting on a couch with an IV pumping a lovely little cocktail into my chest. Oh how wonderfully messed up that sounds, gotta love it! God is good, forever and always!!!

The things we do for Joel

It was about the middle of December that these pictures were taken.  I know there are lots but without them you don't get the full effect of my boys turning green. 
We were all asked to have our blood work done to see if we were a match for Joel.  It was just for a backup plan as Joel most likely will not need a bone marrow transplant. 
 The boys have always been healthy and had no memories of ever having blood work done.
 They were a bit nervous but I told them we would stop at the toy store after and pick out some lego.
The promise of lego makes everything doable at this age. 
See his face…. oozing with confidence.  He thinks it will be a piece of cake.
 No worries
 No problem
 Just a bit uncomfortable
 It's all good
 You would think
 that all his blood
 was being drained out of his body.
 Not just two little vials.
 All done.  
He had to go lay down after.  I walked him over to the bed and quickly ran back so that I could capture Ari's experience.  
 Ari, after having watched Adam's experience wasn't phased a bit. 
 This will be a piece of cake.
 Oh wait…. is that doubt I see on his face?
 At this point
 I don't think
the promise of lego made it any easier.
  Poor Ari had to be poked in both arms as he mustn't have any veins in his left arm.

 They were both very brave.  Neither made a sound or a complaint.
 Brianna went the following week but I assure you, even though I have no photos, her experience was no different.
Enough time has passed and the boys can look at these picture now and laugh.
 I love my boys.
 Proof of how much we love our Joel
 Joel, we will use this against you one day.
We got the result from the blood work at the beginning of January.
  None of us are a match. 

Monday, February 14, 2011

Good News

Joel's counts have all come up and he can start treatment tomorrow morning.  I spoke with Joel's nurse Karen this morning and she said that these setbacks during treatment are more common than not.   Actually, they have more concerns if it never happens.  If the counts haven't come up in three weeks, then they are concerned and investigate with another bone marrow biopsy.  Joel only had to wait an extra week and a half between treatment this time.  It is all good... but they really should inform the parents of these facts before hand so we don't sit around worrying.
Counts today were as follows
ANC - .82 (needed to be at least .75 for treatment to start again)
White - 3.1
Hemoglobin - 128
Platelets - 326
Tomorrow will be a long day at the hospital.  Joel will start the day by being hooked up to an IV and will be give a dose of Cyclophosphamide as well as some anti nausea medication.  He will then be monitored and rehydrated for the following 4 hours.  He will then get a dose of Cytarabine (also known as ARAC).  Joel will book appointments for the following three days when he will more ARAC.  He will pick up his prescription for Mercaptopurine (also known as MP-6), an oral chemo which he will take every night before bed for the next 14 days.  That way he can sleep off most of the side effects.  He is not allowed to have any dairy from suppertime on as it reacts with the MP-6 and he is not allowed to eat in the evening either as it must be taken on an empty stomach.
Side effects from these drugs are hair loss, nausea, feeling weak and tired, and a drop in blood cell counts.
I am laughing as I write this and look at the title of my post….  no, it really is good news, the chemo reacts with the cancer cells and makes it so they cannot reproduce…. it is a good thing.

Sunday, February 13, 2011

Back to Vancouver

Joel and Grant left again this afternoon.  They will be staying in Chilliwack tonight at Gramma's house cause RM House is full tonight.  Their room will be available for them again on Monday.  On Monday Joel has blood work done again.   He was sent home again last week cause his counts were way too low to start treatment (ANC .35).  His counts on Friday were still low, the ANC was .63 and it needs to be .75 to start treatment.  
It was nice to have him home, the house felt kind of normal again.  Joel was able to go to youth group and see all his friends.  He was asked to speak to the kids about what he has been going through and answer some of their questions.  Joel said he was nervous but he thought it went well. 
It is hard letting Joel out when he is home.  He is 17 and is at the age when he should be becoming more independent and making his own choices.  He has had so many things taken away from him and I don't want to restrict him anymore.  At the same time, his white cell counts have been so low that he is at a very high risk for any kind of infection.  Driving and spending time with his friends lifts his spirits immensely and makes him feel human again but I still wonder if it is safe.  How on earth do you tell your seventeen year old "no, you cannot go to church". 
I also struggle with wanting to control things.
When Joel was young, he had no fear.  As soon as he could crawl he would climb up and over anything.  He fell everyday, always had bumps and bruises.  Once when he was fishing, he fell off the bank and into the river.   I not only worried for him but I worried for the health and welfare of my heart and as well as my sanity.   When he was around 6 years old, Grant took him up to Silverstar and taught him how to snowboard.  Joel would ride up on the chairlift; position himself at the top of the hill, and ride straight down as fast as he could.  I could not watch and I would cringe to hear about it later.
When he was around 2 years old and climbing over everything, I vividly remember praying one day and saying to God “I can’t do this anymore.  He is yours….. You take care of him and protect him cause I can’t do it!!!!!!”  I immediately felt peace.  I was still there to catch him when he would climb and fall but my heart no longer jumped wildly in my chest.  I still had misgivings and I still worried but I accepted the fact that I couldn’t control everything.
Now Joel has a huge battle to fight and I feel helpless once again.  I cannot control his blood counts, how he will react to the chemo, or if his treatment needs to be delayed. I often think back to the prayer I prayed when he was a toddler.  I still worry and stress but I also feel peace.  I still have to remind myself.  I am not in control and I am not supposed to be.  God is, and he does a much better job.

P.S. I am not rude.  I just don't know how to respond to comment yet.  I need my super smart sister to teach me how…. hint, hint…. Wendy…. are you out there?

Monday, February 7, 2011

Mixed Feelings

Joel is coming home again.  He is currently packing and cleaning out his room at RM House.  He will be leaving Vancouver around suppertime and coming home for the rest of the week.  Part of me is so excited that he is coming home.  But part of me is disappointed since his counts aren't coming up and his treatment has to be postponed.  This is normal and it happens to all the kids going through chemo but it is hard to live in limbo.
At the beginning of February I wrote out all his treatment dates and if he never had to wait for his counts to come up, he would be finished the intensive part of treatment in October.  After that he still has 3 years of once a month chemo.  Maybe I put too much hope into those dates.  It is typical of me, I like to know what is going to happen and when.
Joel will have blood work done again on Friday.  If his counts have come up, then treatment will start again on Tuesday, February 15th.

Saturday, February 5, 2011

My Kids

This journey has not been easy but as with everything, there are positives to be found.  

I have watched Brianna, having been shaken to the core, carry on with her life, school and work.  Willing to give up her plans or her car at a moments notice if something comes up.  I know that she is strong and I am confident that when storms come her way, she will be able to weather them.

Joel, at an age when he should be becoming more and more independent and spreading his wings, is losing so much control.  His choices are limited right now as are his opportunities and his life seems to have been put on hold.  I know he must have complaints and frustrations but he does not voice them.

Now that Grant is in Vancouver with Joel, Adam has stepped up and is filling the role of being the man of the house.  Asking me if we can afford things, hourly asking if there is anything he can do to help, not wanting to leave and go out with his friends because he feels responsible for the welfare of the house. I don’t know how to take the weight off his shoulders; I don’t think he even knows he is carrying it.  I think it is being done unconsciously but it has been amazing to see the maturity coming out of him, the questions he is asking and the concern he is showing for others.

Ari makes being a mother very easy.  He is content, carefree and easygoing, much like what Joel was like at this age.

For me, it has been a chance to reflect on and decide what is really important to me.  I have been blown away and humbled at the love and support that has been shown to our family.  I have always been fiercely independent and self-reliant.  I like having options and feeling like I am in control.  So, I too have to change and grow in a manner in which I personally would not have chosen for myself.  I only hope I can do it as gracefully as my kids have. 

It has also been a great weight loss program but definitely not one I would recommend to anyone else.

My kids are all human and have faults so tomorrow (next week, month, year) when they do something immature, silly or embarrass the heck out of me…… I promise to read the above and respond with grace.

Wednesday, February 2, 2011

Do not be Deceived

Just because I haven't posted about chocolate, doesn't mean I haven't been eating any.  Chocolate has been consumed, inhaled, drunk…. you name it.  And probably on a daily basis.   Today I am missing whole foods which has the biggest selection of interesting chocolate that I have ever seen. 
Chocolate covered honey, mint chocolate, and Mexican stone ground chocolate.  Yum.

 Cinnamon flavoured and one with chili,  I couldn't choose between the two.
Each package has two disks.  One for eating and the other for making hot chocolate.  At least that was my assumption.  

Joel had a great week at home.  He saw lots of friends and said that he felt human again.  He headed back to Vancouver today.  His counts have dropped even lower so he can't start treatment tomorrow.  Maybe Monday.  A big stack of books came today from the Leukemia & Lymphoma Society so I have lots of reading and studying to do.