Thursday, December 29, 2011

This Morning

This morning Joel went to have blood work done.  His ANC had come up to a whopping .87.  So he and Grant and Adam and Ari all headed down to Vancouver.  The roads were good, clear the whole way. They are just settling in to Ronald MacDonald House tonight.  Tomorrow Joel will go for treatment.  I think he wants to go to Long and McQuaid and the boys would like to hit Science World.  Hopefully all goes well and they will be back sometime this weekend.
December 30, 2011 will be the starting day of Maintenance.

Wednesday, December 28, 2011


So Joel's blood work was all good except for his ANC.  It was at .7 and it needs to be at .75.  So….. we will try again tomorrow morning.

The best Christmas ever

Joel started eating again about a week and a half ago.
He is still not eating much but at least he is trying.
He is still fighting the nausea and the headaches.
He has been really tired and has been sleeping lots.
He did get out so see some friends.
And he went to some music practices.
He played his guitar and did a Scripture reading at Church on Christmas Eve.

This morning he went for more blood work.
Hopefully we will find out before lunchtime if he heads down to Vancouver today.
If it is all a go, then Maintenance will start tomorrow, December 29th.

 Brianna, Shane and Sienna got to be Mary, Joseph and Baby Jesus at the Night in Bethlehem. 
 This past week we all did a little bit of this.
 And a little more of this.
 And a whole lot of this.  It was a great week.
I am so going to miss her when she moves to Alberta. 
 We were all so happy to be home for Christmas.
 The favorite gift this year was the table hockey.
It has been played constantly ever since it was opened. 
And I caught the prettiest smile on film. 


Girls get two years of maintenance but boys get it for 3 years because they have more places that the leukaemia cells like to hide.  So for the next three years Joel will go to Vancouver every three months for chemo in the spine - Methotrexate (He had been getting that once or twice a month).  Once a month he will go get Vincristine at the Vernon hospital (he had been getting it up to 4 times a month).  Five days a month he will be on low dose steroids (Prednisone).  Once a week he will take oral chemo (Methotrexate).  And everyday he will also take another oral chemo (Mercaptopurnine).   He will also continue taking antibiotics three days a week.
It still sounds like lots to me but compared to what he has been taking this will be much less.
So that will be the plan for the next three years.
His hair should start to grow back soon (not sure if he will ever cut it again).
He will be 21 when Maintenance is finished.
Then it will be one more year until he is considered cured.
I am looking forward to 2015!

So, here is to hoping that the last 13 months of intense chemo will have retrained his bone marrow to produce normal blood cells.  Praying that the next three years of maintenance will prevent a relapse.

Wednesday, December 14, 2011

Sienna and Joel

 Joel and I finally got to meet Sienna.  She is the cutest thing ever.
She looks just like her dad.
Since I got home, Brianna has come over everyday so that I can hold her and she can go have a nap.

Today Joel went for chemo in Vernon.  He has constant nausea and headaches and is now losing weight.  The doctor decided to hydrate him before sending him home and she wants blood work done again Friday cause his counts are dropping quickly and she thinks he may need more transfusions.  He just got home and he went straight to sleep on the couch.

Stories from Vancouver
If anyone is interested I thought I would share a few blogs from some of the families we have met in Vancouver.

This time in Vancouver one of the girls who has been staying at RM House finally got a heart.  She has been waiting almost a year.  Her story was just on CTV about a week ago.  So far the recovery is going very well.

Last Thursday Joel got a pile of chemo.  One of them was a spinal.  He was scheduled to have it done at 8:30 am.  Joel prefers having his spinals done with no pain medication cause he doesn't like the side effects.  There is a 6 year old girl at RM House who is from Salmon Arm and has the same diagnosis as Joel.  She is about one month behind Joel in treatment.  She was scheduled for the same spinal chemo but her appointment was at 8:00 am.  She loves the pain medication they give her.  She said "Mom, you have to try this stuff.  It makes everything feel better".  Then she asked the nurse if she could have some more and if she could have some to take home with her cause she could really use some when she got home.  When the nurse said "no", then she asked if she could have another spinal.  The nurse told her no again because it was Joel's turn next.  Then she asked if she could have another spinal after Joel was finished his.  Those must be some mighty fine drugs!

Last Friday when Joel and I were still in Vancouver finishing up a few last appointments, one of the doctors walked in on Joel throwing up.   It is always a good thing when they can see exactly how he is doing cause when anyone asks him how he is doing, he smiles and says "I'm good".  Anyway, the doctor got into a discussion with one of the nurses just wondering what they could do to make Joel feel better (hydration, transfusions, different meds).  Joel did not want to be hydrated or get transfused cause he just wanted to get home and he didn't want anymore medication cause he doesn't like the side effects. The nurse kept saying that she didn't know what to do for Joel cause she didn't know what was causing him to feel so bad (the chemo or the radiation or being dehydrated or low blood counts or…. or…. or).  And then the doctor said something I have NEVER heard a doctor say before.  He said "Lets be honest here, we did this to him".  Anyway, it made Joel laugh.  They decided to give him a couple of transfusions and it did help a bit.  He also agreed to me drugging him up for the drive home so that he could sleep the whole way so I know he was suffering a lot more than he let on.

He also got another CT scan done to check out what the clot in his brain is doing.  We talked to David on Monday to get the results.  David said it looks way better than he expected it to look at this point.  There is only a skiff where it was.  So that means that Joel only needs the enoxaparin until Friday and then NO MORE NEEDLES twice a day.  He is so excited.

Wednesday, December 7, 2011

Where Joel's At

 This is where Joel goes for chemo during the week.
Yesterday was his first day off since getting here over 2 weeks ago.
He has had chemo or radiation or both everyday in the past 2 weeks.
Radiation is finished now!
 I finally got a picture of Joel with his Oncologist.
 On weekends when Joel gets chemo, he has to go in the main entrance, be admitted, and then head up to 3B 
 It was extremely busy last weekend and he had to wait in the playroom for a long time.  At this point his counts were all getting very low.  He was very pale but his mood was dark.
He has been extremely tired, the nausea hit this week and he has been getting lots of headaches.
He was escaping into one of my favorite books, "Till We Have Faces" by C. S. Lewis.
 But the nurses here have a way of making him laugh and that seems to make all the difference.
 It made his day when the music store at Granville Island was finally open.
 On Monday we were given passes to go to the Christmas Light Up at the Capillano Suspension Bridge.
Joel was feeling very rough that day and didn't want to go.
But I gave him a cup of coffee and talked him into trying it out.
He had tonnes of fun.  He did lots of walking which is great for making his blood counts recover.
He got to try the glass blowing booth and made a Christmas ornament.
It was so cool.
 Here he is adding color to his glass.
 Melting the color in the furnace.
 Adding some white.
And then stretching out the glass.
 The bridge made me weak in the knees.
We also did the tree walk which was very cool and the cliff walk.
And we tried on lots of accessories that we could never afford in the gift shop.
 This week at Ronald Macdonald House we decorated for Christmas.
Joey's put on a very yummy family dinner.
Gramma J and Jerry came to visit.
Uncle Stephen and Aunty Lani came to visit.
Aunty Rachel came to visit.
 Santa came to visit.
Here he is asking Joel if he wants hair for Christmas.
Joel was not offended cause underneath Santa's hat, he was bald too.
Today Joel is feeling pretty rough so he is going to stay in bed as long a possible.
I will bring him up a cup of coffee soon, that seems to be the only thing that helps these days.
He goes for more bloodwork this afternoon.
His counts have all dropped and he may need some transfusions.
Tomorrow morning he gets three more doses of chemo.  Methotrexate in the spine, vincristine and Peg-Asparaginase in the port.
On Friday he has another CAT scan to see what the blood clot in his brain is doing.
And then, if all looks good, we will be heading home.
Maintenance is scheduled to start on December 27th, as long as his blood counts have recovered by then.