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.

Another Update

And just like that things get turned around again.  When Joel went down to surgery to get the sheath removed, they noticed more clotting starting.  A different doctor was on today and it was late in the afternoon.  He went in with the chemical and the drill and ended up tearing a vein.  Heparin had to be stopped, I think it can be started again in another hour or so.  It will take about a day for the vein to heal so the chemical they use to clear the vein cannot be used for at least another 24 hours.  The veins they are working in are starting to narrow because of all the work they have been doing in there so they will have to put a permanent stint into one vein for sure.  He is being put back into the Step Down Unit so that he can be constantly monitored. So that means another noisy, busy night with his leg being moved, poked and prodded several times an hour.  And a few more nights at VGH.  He has no internet, hooking up the tv has been complicated because of all the moving around and changing rooms…..  he is bored and tired of being immobile.
The plan for tomorrow is to wait until the vein has healed, then go in and clean it out again and put in the permanent stint.  Still no ideas as to why his body is reacting this way or why his blood is trying so hard to clot in that section of his body.
And me?  I am sitting here putting off publishing this post,  it hurts too much.  I am asking why, why Joel, hasn't he been thru enough?  I just want him home and healthy.  I want maintenance to be easy.

Update

This morning they ballooned where the clot was and it is starting to look better.  So the plan is to check it again this afternoon and take the sheath out.  Yay!