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.

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!

My Country Boys

I snuck the boys out early Sunday morning.  It is the only day I feel totally brave and confident enough to drive and park in downtown Vancouver.  Adam has a thing for heights now and he wanted to check out the Vancouver Lookout.  We arrived about 10 minutes early so my small town boys entertained themselves on the escalator. 

 Ari got weak in the knees when he was on the elevator and he wouldn't stand by the doors.  He was horrified when one of the staff told him to check out the inch gap between the elevator and the floor.
And yet, he asked if he could climb up onto the glass…… and was disappointed when I said no.

 Even though the morning was very foggy, it was a beautiful sight.  We were planning on returning that night so we could see all the lights but after a long and rough afternoon at the hospital, I sent them off for a sleepover with their cousins.  They had a great night, got very little sleep and they gave their aunty and grandma a very noisy and interrupted night of sleep and a very early wake up call.

So it is not a stint that they left in Joel's leg, it is a sheath.  I get so confused when the doctor uses words like shaft, stint, sheath, shunt in the same sentence….. and I have no idea what they are all used for.  It took me a few days but now I have it straight…….. I think.
On Sunday morning Joel went for another ultrasound scan and it showed that a 6 inch clot had returned.  They changed the medication that they were putting into the sheath and planned another scan for in the afternoon.  That scan showed that the medication was ineffective so they used a stronger medication along with the drill and cleaned out his vein once more.  Joel started to bleed during the procedure but in the end everything was okay.  The doctor said that his veins all looked perfect, no damage and that there was very good blood flow thru them all.  He was unsure of how many times they would be able to repeat this process as the medication and the bleeding it causes could be a problem.
Joel had another scan scheduled for Monday morning but it didn't happen until the afternoon.  It showed that clots were forming again in three different places but there was still adequate blood flow thru the vein.  His medication was changed again.  When Joel had the blood clot in the summer he was on 50 units of heparin twice a day and then it was dropped to 40 units.  This time they put him on 100 units but now they have upped it to 250 units.
Joel's blood is working very hard to coagulate and no one knows why. The good news is that the fever seems to be gone now.  The pain is also much better and the swelling in his leg is slowly going down.  Yesterday Joel only had one dose of morphine for pain, previous days he was getting 10mg every 4 hours along with tylenol and that was not enough.
Joel is having another scan done right now.  The doctor said that there would likely be more clotting and if so, they will go in and clean it all out again later today.
Joel really wants to have the sheath taken out of his leg and to be able to return to Children's Hospital.  VGH has been great but there is just something very special about Children's.  I didn't take any pictures of Joel this time, didn't think he wanted me to.  Grant calls him a Borg(? something off of Star Trek?)  cause he has so many tubes and wires coming off of him.  More good news, he started eating a bit today.  I think it has been over a week since he has eaten anything and before that he wasn't eating much.

Surgery Day

Joel went down for surgery at 11:30 this morning.  It went very well, they were able to remove most of the clot and he was back upstairs by 2:00 pm.  He is in a little room now so that he can be monitored closely all night.  Only one of us is allowed to be with him at a time so Grant will be staying with him and sleeping tonight in the family lounge.  Tomorrow morning he will go back to surgery and they will assess his leg and see if it needs any more work.  Right now there is good blood flow thru the vein.  They left the stint in his leg, it comes out just behind the left knee, if everything looks good tomorrow then hopefully they will remove it.  He is in lots of pain right now and they are just working at finding the right amount of medication so that he is comfortable.  Grant texted me a little while ago and said that he is finally sleeping.  He is fighting a high fever again but that is probably just from all the stress on his body.  I probably won't know much more until tomorrow.
Having surgery on Saturday or Sunday is definitely the way to go though..... no one before him, no one after him.  He had the whole wing to himself and the angioplasty team.

Surgery tomorrow

Adam, Ari and I drove down to Vancouver today, just couldn't stay away.  The roads were all clear and we had a great trip down.  We arrived around 6:00 pm and went right to the hospital.  Joel was very tired, on lots of medication and still in a lot of pain.  But he was very happy to see us.  They moved Joel over to Vancouver General Hospital this afternoon because they have more experience with removing clots.  They have a plan now, surgery to remove the clot tomorrow at 11:00 am.  They want to deal with it fast now in order to reduce the risk of permanent damage to the vein and his leg.  We met a few members of the team who will be working on Joel tonight.  They came in one at a time to introduce themselves, assess him and answer some of our questions.  We will meet the rest of them tomorrow.
Anyway, I am very tired and I still have the boys laundry wash tonight.  So glad to be at Ronald MacDonald House.  We are in Room 7 this time.  Bunk beds for me and Adam, Ari is sleeping on a foamy on the floor.

Still waiting

So I guess that when Joel does anything he wants it to be noticed.  His philosophy must be, "Go big or go home".  The results from the ultrasound show that the clot goes from his knee to his belly button.
Tomorrow they are planning on doing some kind of echo or stress test on his heart.  It will show if the clot is still growing.  They are watching for any signs of chest pain or difficulty breathing cause that would mean that the clot is still growing and moving into the lungs.  After all the testing is finished they will assess the results and come up with a plan.  Right now they are thinking of doing surgery tomorrow afternoon (if there is an opening in the operating room) and putting in a filter.  They don't want to discuss the risks or complications with us yet as a decision has not been finalized yet.  So after midnight Joel is not allowed to eat or drink anything.  He is still fighting the daily fevers, they are doing blood cultures everyday to rule out if he is septic.  If his blood is clear then they will start him back on the chemo.  I am torn, I know he needs the chemo in order to stay in remission but his body is so beat up right now that I hate to see anything else going into it.  He is still in lots of pain and his left leg is not functional right now.  He was too tired to talk to me on the phone today, he is just doing a lot of sleeping and resting.
Grant snuck out for an hour this afternoon and picked up a change of clothes for both of them.
I have given Grant my list of questions for the doctors.
It is really hard for me to be here and not down in Vancouver.
Grant borrowed a laptop for Joel from the clinic today so send him an email and lots of love.

My Turn!

The plane didn't leave last night cause it was too foggy so Joel and Grant flew out first thing this morning.  I had to get the two youngest onto the school bus this morning so I didn't have time to pack them a bag or drop anything off for them.  So they are down in Vancouver with the clothes they were wearing and their wallets.   Grant went and bought toothpaste and toothbrushes today, tomorrow he will try to get out and pick up a change of clothes for both of them.
Joel saw his oncologist as well as several other doctors today.  They have told him that he will be in the hospital for at least a week.  The clot in his leg is quite big and they don't want to take any chances.  Right now he is getting antibiotics, he is still spiking a high fever every late afternoon.  He has started back on the enoxaparin (the blood thinner), and they think he will have to be on it for the next three years until he has finished all his treatments.  I think he is getting a few other things, but I'm not sure what.  They will be studying the ultrasound he had done in Vernon tomorrow, maybe do another one.  More tests will be scheduled over the next couple days, maybe some genetic testing to see if he has a predisposition to developing clots.  But neither Grant or I know of any family history of anyone having a problem with clots.  And hopefully they will have some options or a treatment plan in a few days.
They are unsure of why Joel is having these issues, maybe because his blood count dropped so low a few weeks ago, maybe it is because of the infection or maybe it is something completely unrelated.
We all talked to Joel tonight, he had just gotten tylenol for the fever and morphine for the pain so he was feeling pretty good and he was very chatty.  His hair is finally starting to grow back again and he has a very dark 5 o'clock shadow on his head, I've never seen anything like it.  But the hair that has come thru is light and very fine.
So I don't have very many answers about Joel, still just lots of questions.  But I know he is in the best hospital around, he is getting great care and that is all that matters right now.
And yes, it was my turn to go down with Joel…. but once again, I'm not sure how it happened, Grant went and I stayed home.

Back to Vancouver

Joel noticed some swelling in his leg this afternoon.  I was on the phone with Children's most of the afternoon describing symptoms, asking and answering questions.  Today's blood work all looked really good and he was told to start back on the chemo today.
So he went into Vernon for more antibiotics tonight.  The ones they were giving him didn't seem to be working so they gave him a more powerful kind, I think he gets this one every 6 hours instead of every 24 hours.  He still had a high fever and so much pain.  Two morphine pills every 4 hours didn't help at all with the pain.  His leg started turning red so they did another ultrasound.  This time they found a clot in his leg so tonight he and Grant fly back down to Vancouver.  I am not sure what the plans are, someone in Vancouver will assess him again when he gets to the hospital.  The doctor here said something about surgery, maybe to insert some kind of umbrella that will catch any pieces of the clot just in case any break off.  They have given him blood thinner and lots more morphine…… that is all I know tonight.

Great Grandpa's Cane

Joel asked if he could have a wheel chair…..  I am looking into it.  He has been using Great Grandpa's Cane to get around.  And it has been working alright.  But today, Grant brought him home a walker…….  Joel laughed and said that he was practicing for when he is 90.  He said that by then he would be a pro.

The virus is gone now but he has picked up an infection the lymph node near his left hip.  At first we thought it was just really bad side effects from the steroids cause he is always limping and in pain the week after taking them.  But Sunday night he got another fever and Grant took him in to emergency.  The x-ray and ultrasound came back clear but they found a lump near his hip.  He will be going to the hospital every evening for IV antibiotics.  We are just waiting now for the blood cultures to come back to see if he can start oral antibiotics at home.

Joel's attitude is great.  He is still not eating much.  He has been sleeping on the living room floor cause he can't handle the stairs to his room.  He doesn't seem to mind us all tiptoeing over and around him every morning.  He does not complain but I know he is in quite a bit of pain.  He does not usually take any extra medications cause he does not like the side effects.  He prefers to have his spinals and other procedures done with a bit of discomfort and a clear head.  But the past few days he has been taking quite a bit of morphine, it doesn't take away the pain completely but it does take the edge off.  But it does affect his sleep at night and it causes him to have panic attacks and very strange dreams.  I am not allowed to give him tylenol cause it masks the fever and with his low immune system we need to know if he has a fever.  But we are still looking for other ways to manage the pain.

His younger brothers try not to drive him nuts but it is hard when they keep being told to be quiet and settle down or go outside and all their plans get canceled because Joel's needs come first.  Sunday night they wanted to go skating and today they were supposed to go swimming.   Instead Grant has taken Joel to the hospital again.  The boys and I will have a game night, watch a funny movie, have popcorn, chips and pop.  Tomorrow the boys and I will take Joel in to have more blood work done.  I will bribe them with something small, maybe mocha and timbits in exchange for them helping and doing it with a good attitude.  I feel guilty sometimes, I want them to have normal boyhood memories, adequate parental attention and no worries.  But at the same time, they have Joel, an amazing role model, they are learning to take care of others and to put others first.

And Me?  I think I am learning patience and to go with the flow.  I usually have a long list on the go and I am usually multitasking….. doing a thousand things at once.  I just can't function that way anymore.   I still make my lists but they are usually just daily lists.  I have let go of all my monthly, yearly and life long plans.  And I can only think enough to do one thing at a time.  The funny thing is that life still goes on, enough still gets done, everyone is fed, clothed and still alive…… it is all good.

Rachel gave me Ann Voskamp's book "One Thousand Gifts" for Christmas.  I cried like a baby when I read the first two chapters.  She seems to write my heart and feelings in a way that I can't cause I feel like I need to censor myself.  She had the same nightmare that I had been having.  I read that chapter shortly after having the dreams about doctors and cancer and I haven't had that dream since.  I am going to read the book again, slowly this time, and I will do the book study and start my own gift list too.

But the boys are laughing and watching a show so I should go join them.  Please pray for Joel, that his body will be able to fight the infection quickly and for pain to go.

What I found in my bathtub!

 This!

This is what I found in my bathtub this week.

I have not seen one of these in there for a very long time.

She has a birthmark in her belly button.

It makes it look like someone forgot to wash in there.

 And then I found her sleeping on the couch.

 We have all been fighting over her.

 And taking turns holding her.

 We have her for two more sleeps.

About 54 more hours.

 The house will seem empty and quiet when they go.

And we will miss them.

This is where Joel has spent the past week.  He has been fighting a fever since last Thursday.

He spent Tuesday in the hospital, having chemo and then getting more transfusions.  

The blood work showed that he is malnourished.  I threatened him and said that he either has to start eating or else he will have to start drinking Boost.  He was not happy but promised that he would start eating cause he hates the Boost……. I am still waiting for that to happen.  He has no appetite, doesn't want to drink, can't stomach any supplements and doesn't want to take any vitamins.

The doctors think that he is fighting a virus and that he should start feeling better soon.   He is still off all of his oral chemo but he is back on the steroids this week.

This morning Brianna took him into the hospital for more blood work.  She told him that she would not go in with him though cause then she would faint.

I am making him steak and bison sausage chilli for supper tonight.  Brianna made him cheesecake.  I have Boost in the pantry……….. just in case!

Still learning to going with the flow

Just hanging out with Joel at the hospital in Vernon.  His counts have been dropping and he was in dire need of a transfusion.  He had blood work done here on Friday, ANC was 2.2 (they want to keep it low for the next three years, between 1 and 2), Platelets were in the 90's, and hemoglobin was in the 70's (kind of low but they just wanted to see if it was moving up or down).  Joel was tired but seemed to be holding his own so they scheduled more blood work for this coming Thursday but said to go in earlier if he started feeling worse.

Joel started feeling even more tired than usual, he got dizzy when he stood up, the nausea and headaches had returned, and he said that it felt like his heart was racing.  So I took him in this morning to see if the counts were still dropping, and they were.  ANC was a 1.2, platelets in the 50's (he is getting nosebleeds and when he gets a needle it doesn't want to stop bleeding but I don't think they transfuse them until they drop below 30), and the hemoglobin was in the low 50's (kind of scary low).  That is why his heart was pumping so fast, working extra hard to supply oxygen to his body.  His hands started to look very transparent and his face had little color...... he has had one bag of blood so far and he is starting to look a bit better.

I usually know when his hemoglobin is dropping cause he gets very grumpy and irritable but this time that didn't happen.  He just stayed his normal happy and go with the flow kind of self. 
I talked to his nurse in Vancouver this morning.  She said that Joel's counts are quite unusual.  We have been told to stop all the oral chemo until next week when he comes in for the Vincristine, they will check his blood counts again and take it from there.   Karen said that while Joel's reactions right now are strange, it is not unheard of for some kids to have a rocky start at the beginning of Maintenance.

When Joel finished his intensive treatment and when maintenance started, the doctors and nurses and staff at Ronald MacDonald house told us to go out and celebrate, to have a big party. Joel was feeling so wretched and miserable, the last thing he wanted to do was go out and celebrate.  The recovery from the treatment he got in November and December just seems to be taking so long this time.  His weight is still low, he hasn't put any that he lost in December back on yet. I am trying to bribe him with pie, cookies, baking and yummy meals but his appetite just hasn't come back yet.  His legs still bother him and his foot seems to be doing funny things.  His hands shake when he eats or does anything.  His hair has not started growing back yet and his eyebrows and eyelashes have just started falling out.  When I give him a hug, I swear I can feel every bone in his body.  And now he has started coughing.

I guess, somewhere in the back of my subconscious, I thought that life would be normal and easy during Maintenance.  I thought that life would go back to being normal.  I have been told that life will never be normal again, that we would have to find a new kind of normal but I don't think I have come to terms with that.
Grant has gone back to work now and is getting back into his old routine.  Adam and Ari are settling back into school.  They are busy studying latin and algebra, writing essays, reading history, building rockets and trying to blow things up.  It is mostly good.  I think Adam has some anxiety issues still that we will have to keep dealing with.
But I can't sleep, when I do sleep, I dream of hospitals and cancer.  I have even resorted to taking some of Joel's pills to help me sleep.  I have tried to sit here and write so  many times but it just feels too depressing.  My mind races and I can't seem to shut it off.  My feet just can't seem to find any solid ground yet.

Last year I didn't make any New Years resolutions, my focus was to get thru the year.  I clearly remember the first time I met one of the families that we got to know over this past year.  I was in the family kitchen at Children's Hospital making Joel something to eat, another kids dad came in to fix a meal too.  We started chatting and he said that they had been going thru treatment for a year already.  My first reaction was "I am not doing this for a year!"  And here I am, a year later still plugging along.
I did make a New Years Resolution this year, it was to start doing creative things again.  I used to draw and paint, knit and play music.  I am looking for a small apartment sized piano for the living room and then the plan is to learn to play again.  Is playing piano like riding a bike?  Does it come back easily?

I have started knitting a sweater for Sienna, it is looking very nice.  I have been doing lots of reading too, it helps me escape.  Mom gave me a novel, "The Russlander" and then I read the "The Steppes are the color of Sepia" again.  I like reading about my familys history, just wish I had a book about my dads side of the family too.  Right now I am reading some of my old favorites by Leon Uris.
Joel is busy studying to get his Class 1 learners licence.  He has applied for an apprenticeship with Hydro.  His calculus course should be coming in the mail in the next week or two.  Life is moving along. Brianna and Sienna are coming for a week long visit starting this Saturday, I am so excited. She has promised to make us all a cherry cheesecake. I think I will whip up a double batch of fruit perogies with cream sauce, that should put a few pounds back onto Joel.
I think that spending the day in the hospital with Joel will be good for me.  Maybe it is just stress that is lacking in my life and this will make things feel normal and I will be able to sleep well tonight.  We should be out of here around 8:00 tonight.