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.

ANC

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. 

Maintenance

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.

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.

http://noahstolte.blogspot.com

http://samsconqueringofall-goertzens.blogspot.com

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.

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.

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!!!!