Looking Good

Joel is looking really good these day.  His hair is growing in very nice and it is curly.  He went to work for the first time today and said that it felt really good.  I am a little nervous about it but he is just wanting life to be normal again.  He has been working hard on his Calculus…… in this unit he is learning how to figure out the optimal size of a can and how to describe the location of a rainbow in the sky….. yes, things that he will use often in everyday life.  His counts have been too low again and he has been feeling quite tired.  They are checking them again on Wednesday when he goes for chemo in Vernon and they will probably lower all his meds again. 

I am finding myself saying thing to him that I never thought I would.

Things like…..

"Make sure you ask for the stockings that are the same colour as your legs"

"Let me pay for your $140 stockings"

"Joel, can you please hand wash your stockings in the sink and hang them in the shower to dry so that they don't accidentally go into the wash"

Sienna is starting to look just like Boo from the movie Monster's Inc.

 Last month when Joel was in Vancouver we were asked if we wanted to go to the golf tournament fundraiser.  Joel was having chemo that day so it didn't work for us to play golf…. not that any of us know how to golf anyways.  But we were invited to go to the dinner in the evening and Richard asked me if I would say something……. I said yes because I though it was the least I could do but then I though OH CRAP…… I am going to have to talk in front of people.

Ari was just very excited that he got to go to a very fancy dinner and have very yummy food.  He was very brave and tried a mussel.  He thought it was disgusting but then he ate two pieces of cheesecake for dessert.

 I was feeling very nervous about speaking but then Richard told me that he had just done another fundraiser  a few weeks ago and the person they asked to speak got quite intoxicated and told every one to get off their 'bleeping' wallets and give money.  So then I relaxed, stayed far away from the wine and took a different approach.  I just talked a little bit about our family and about our experience, said a big thank-you for everything, and talked about what a blessing Ronald MacDonald House has been to our family.  

After there was an auction, Joe and Mary Ann G. from MacDonalds bid on a PS3, 8 games and a tour of EA Sports and then gave it to Joel and Ari.  Everyone went out of their way to make us feel like the guests of honor.  Steve invited Joel to come see the morning show next time he is in Vancouver. He said he would give Joel a tour of the news room and then take him out for breakfast afterwards.

  As soon as we got home from Vancouver, we snuck in a quick trip to Manitoba and had a very nice visit with Grant's family.  It had been way too long since we had seen them.  We were just gearing up to do the strawberries when we got back but then the Fortune Creek Dyke broke and the bottom half of the garden got flooded.
I was thinking of just dumping out all the sandbags and making a beach, building a dock and calling it Fortune Lake. 

 And then the wildlife moved in.  They run every time I get the camera out so you will have to take my word for it.  The pretty brown wood ducks have been doing laps thru the strawberry rows.  A big majestic grey crane sits on the top rail of the fence and watches me work.  Most mornings the heron family and their little turkey sized baby pick at the waterlogged strawberries and in the afternoons they are usually wandering the blueberry rows.  The resident doe has twins this year, we saw them for the first time yesterday.  And there are countless turtles, frogs, mosquitos, red and yellow headed blackbirds.  I don't mind most of them….. but I could live without the mosquitos and the duck concerto that starts at 4 o'clock most mornings.

 But most of the blueberries and the top half of the garden has never looked better.  Thanks to Sleepy Hollow Greenhouse I got an instant garden…… eggplant, pumpkins, squash, melons, tomatoes, cucumbers, several kinds of peppers, all sorts of herbs, onions, leeks and flowers.  Yesterday we ate potatoes carrots, beets and lettuce from the garden.  Yum!

Make-A-Wish approved Joel's request for a trip to Israel so that is the next thing we have to look forward to.  Joel has to do the trip before he turns 19 so they are sending us to Jerusalem for 7 days in the middle of August.  They like to keep everything a surprise so I don't really have any details yet.  All I know is that we fly out of Vancouver on August 13th and we fly back to Kelowna on August 22nd. 

Yesterdays chemo

It has been a good month.  Several birthdays to celebrate and lots of cake.

I started running again, first with Ari to keep me company but my alarm goes off at 5 am every other day and that is just too early for him so now Grant runs with me. 

This little girl and her family are moving back from Alberta today.

We are all so excited and can't wait to see them

Yesterday Joel sorted out his pill for the week.

I think I saw 52 pills total in all the boxes.

Plus there is all the ondansetron he has been taking as needed.

He has been throwing up lots again and has been quite nauseated for the past two weeks.

Wednesdays and Thursdays he usually spends out with friends.

He has been working hard on his calculus and sleeping lots too.

He is working on his tan too but I keep trying to get him in trouble for that cause all his medications make him very sensitive to the sun.

Yesterdays chemo went really good.

His counts were all good, right where they were supposed to be.

Patti and Lorne had him laughing and that seems to make so much difference.

If he has a grumpy nurse and if she messes up with the needles or puts the chemo in too fast, then Joel gets tense and the reaction to the chemo seems so much worse.

Dr. Waida gave him a thorough physical.

That woman doesn't miss a thing.

She would still like to see Joel put on more weight cause he is still about 10 pounds less than he was 6 months ago.  She is not sure why he is still so nauseated but she is hoping that he starts feeling better soon because maintenance is supposed to be easy compared to everything he has been thru so far. 

And just to give you something to laugh about

Here is one of those pictures that I don't remember anyone taking

And I don't have a clue what Joel and I are doing…..

Last weeks appointments

The appointments in Vancouver all went well.  MRI was done at VGH on Monday, they said it would be about 10 days before a doctor looked at it.  So, that will be the end of this week or beginning of next before we get the results.  It makes me realize how lucky we are to be at Children's for most of Joel's tests cause then we get results the same day or the next day at the latest.
He had chemo on Tuesday, methotrexate in the spine and vincristine thru the port.  That all went really well.  And he started on the steroids again.  His counts were too low so they have taken him off all the other oral chemo.  He will do blood work again tomorrow and if his counts have recovered, they will half the dose again and start him back on it.  So he will be on a quarter dose of what they first started him on.
He had thrombosis clinic on Wednesday and saw Dr. Ambler.  She was very happy with how Joel's leg is looking.  The leg is still slightly swollen and it might always be.  She wants to see Joel again in 6 months and have another ultrasound of the leg done then too.
I told Joel that for Lent this year he should give up having any extra medical issues and emergencies.  He is doing really good with that so far.  I was thinking that if he could go 40 days without adding to his list of issues, that maybe that would be enough time to make a habit out of it!!!!
Ronald MacDonald House was full this time around.  Lots of little kids and some old friends to catch up with.  Mostly all happy stories.  Lots of the kids Joel has been going thru this with are finally growing their hair back and it makes them look so different.  Brittany is doing great with her new heart.  Bronwyn and Noah have hair growing back and are both back doing a week or two of school each month.  Jasper kept everyone in the house laughing, he is having stem cells harvested from his own body this week and they will be put back into his bones later during treatment.  Nicky, who was sent home cause there was nothing more anyone could do for him, has done a complete turn around and is doing very well.  He was just a really, really slow responder after getting his bone marrow transplant.  Justin is all finished treatment and had his port removed.  One of the girls had a stroke after having the high dose methotrexate.  It was a different kind of stroke than Joel had, her CT scan showed a dark round spot in her  brain and lesions.
Yesterday Joel had his last dose of prednesone for the month so it might be a rough week coming up for him.  Coming off the steroids is always painful but still different every time.  Last month he lay on the couch and shook and twitched.  He didn't even realize that is what he was doing.  A double dose of morphine didn't even touch the pain.  Monday morning he said that every muscle in his body ached but the pain in the bones and joints was gone.
On the plus side, he has found a cure for his insomnia….. he just has to open his calculus book and he is out like a light!

For Gramma Gail

Just thought we would give you a preview of what you get to see in a few weeks.

She is growing fast and awful cute.

Adam and Ari fight over her.

We have all enjoyed having Brianna around.  She has been spoiling the boys with lots of treats.

 She also forced them to learn how to change diapers.

She had to bribe them with hockey cards.

 Ari kept his arms straight in front of him and stayed as far away from her as he could.  He even gagged a bit.  Then he ran to the bathroom and sterilized his hands. 

Adam did a magic trick and…..

…. now Ari has a moustache. 

 Joel's hair is coming in nice and thick, and dark.

I am hoping it ends up like his Grandpa Janzen's, black and wavy.

Joel is doing good, getting stronger and walking more everyday.  

He got ID'd for the first time last week….. Just talk to Pastor Jeff if you have any questions about that!

I am trying very hard to fatten him up.  His appetite is improving slowly.  I cooked him beef tenderloin in butter and I make him lots of pudding and instead of making it with milk, I use cream.  Hopefully the rest of the family doesn't develop heart or clogged artery issues.

Joel is coming home

Joel was discharged from Children's Hospital this evening.  He is spending the night at Ronald MacDonald House and then taking the Shriners Bus and coming home tomorrow.  He finally had an ultrasound this afternoon to see what the clot was doing.  It has come back in his thigh, not what we were wanting to hear, but his body seems to be finding an alternate blood flow route thru his leg.  The doctors are hoping that the clot becomes dormant, there is not much left that they can do to prevent it or clear it out.  The vein may be useless now, and it is just a waiting game to see what happens.  He was told today that he will be on the blood thinners at least 6 months.  He will have to wear the stockings for the rest of his life and he will probably battle swelling in his leg always too.  He had been hoping to be snowboarding this winter and paint-balling again in the summer but I guess he will have to find some new hobbies that have no risk of bruising.  His calculus is sitting on my sewing table just waiting for him, I wonder if that will be just as fun and exciting as snowboarding?  Anyway, I have a new mission now too, I need to go make lots of fattening food for him.  Thanks again for all your prayers.

Back at Childrens

Joel was transfered back to Children's Hospital yesterday around noon when a bed finally opened up.  He is in great spirits.  I chatted with him on Facebook in the afternoon and again on the phone in the evening.  He was very happy to have internet again and catch up will all his friends.  He has lost 10 pounds so my mission when he gets home will be to fatten him up, again.  I should start baking now!
 He didn't realize the size of his blood clot until yesterday when we were talking on the phone.  He figured it was at least 2 feet long and he is quite proud of it!?!  He is quite impressed with how much money has been put into keeping him going…… he says he will never ever complain about paying taxes cause there is no way that he will ever be able to repay what healthcare has shelled out on him.  Anyway he looks at it, he says he is coming out ahead.  Got to love that boys attitude.
We don't know the plan yet, I talked to Grant this morning but only one of the doctors had been in to give him a quick checkup.  The swelling in his leg has really gone down which is great because they had told us that his leg might be swollen for at least 6 months.  He is walking a bit, very slowly but a little more everyday. It looks like the only reason he is being kept in the hospital right now it so he can continue getting the two different kinds of IV antibiotics every 6 hours but we don't know how much longer he needs to be on those, probably not much longer.  He is off for another ultrasound this morning and the results should answer many of our current questions.  Hopefully he will be discharged soon and sent over to Ronald MacDonald House.
He is back on his oral chemo and antibiotics again.  Tomorrow he gets vincristine and starts back on the prednesone.   That concerns me a bit cause it is the prednesone that causes the pain in all his joints and it was shortly after taking it that the problems with the clot started.
I felt very overwhelmed yesterday at Church.  I probably wouldn't have even gone if I didn't have kids who all wanted to go, but it was just what I needed.  So encouraged to see and hear how many people love Joel and are praying for him.  Our family has been blessed and we are so thankful.  Words just can't express it.

A New Plan

Yesterday Joel went and had his vein cleaned out again.  Each time they do it they have to use a new drill that costs $2500.  The procedure went well this time but as soon as they finished they noticed the clot reforming.   Some of the doctors wanted to insert a permanent stent but there is no guarantee that it won't keep clotting.  In fact it probably would keep clotting because the underlying issue causing the clot has not been resolved.  The head doctor doesn't want to go that route, at least not now.  With a stent in his leg, Joel would never be able to play any contact sports and he would always have to worry about cuts or bruising as he would be on blood thinners for the rest of his life.
The plan this morning is to remove the sheath and have Joel fitted for a tensor stocking that he would have to wear for the next few months.  Joel's leg will probably remain swollen for several months.  He will also meet with one of the hemotologists.  They will put him on high doses of powerful blood thinners and hope that his body will be able to resolve this on its own.  They will book several ultrasound and MRI scans so they can keep a close eye on it.  If the the clot just keeps growing larger in spite of the medication they will have to come up with a new plan, maybe exploratory surgery to see if anything in that area is putting pressure on the vein.  Joel will move back to Children's Hospital at some point today but I have no idea yet how long he will have to stay.  He is looking forward to a change of clothes and a shower.  He has been laying flat, mostly immobile on the same bed for a week now.  He says he feels slimy…… gross!  At least he still has a sense of humour.