Tuesday, February 21, 2012

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.

Monday, February 20, 2012

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.

Thursday, February 16, 2012

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.

Tuesday, February 14, 2012

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.


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.

Saturday, February 11, 2012

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.

Friday, February 10, 2012

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.

Thursday, February 9, 2012

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.

Wednesday, February 8, 2012

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.

Tuesday, February 7, 2012

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.

Monday, February 6, 2012

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.