Wednesday, March 30, 2011

Laughter, the best medicine

So, I thought I would show you all some pictures of Joel's room.  He is in the fishbowl this time around.  It is the area where kids are isolated for 100 days while they get their bone marrow.  Joel is very happy that he does not have to be isolated.
This is the lovely wall decor.  A young girl was in this room for a long time until recently.

Lots of Tinkerbell stickers surround the bed.  Joel feel right at home.

The neon yellow is the methotrexate.  He was given 7 liters in total over 24 hours.  It was all finished as of 5:45 pm tonight.  He gets the antidote tomorrow evening.

He has named his IV pole Jedediah Macesmith MacDonald.   He says it's his baby cause he has to take it everywhere with him and it beeps at him all the time.

This morning the resident doctor came in and took all Joel's vital signs.  She checked all his lymph nodes thoroughly and Joel is very ticklish.  Yes, she had him squirming and laughing hysterically.  When she leaned in to check his eyes, she was so close it looked like she was kissing him and I laughed hysterically.
Joel is doing great.  He is eating lots and has had no nausea or other side effects from the methotrexate.  He is looking forward to getting a good night sleep tonight as last night he was woken up at least every 2 hours in order to have his vitals checked.
I am back in my groove and I caused no one to honk in anger today.

Tuesday, March 29, 2011

Back in Vancouver

Yesterday Joel had blood work done first thing in the morning and then we sat around waiting for the results which seemed to have gotten lost in the system.  No one was allowed to touch the phone.   I had made plans the day before to quilt with Kelly, knowing full well that if I made plans Joel’s counts would definitely be up.  I did not pack or get ready to go as I did the previous few weeks since I was tired of unpacking.  After lunch Grant phoned Children’s Hospital again but they were still looking for his long lost results.  Finally they called. 
Hemoglobin – 126
Platelets – 377
White blood count – 4
ANC – 1.96 (way up from 0.03)
So I madly packed.  Said goodbye to my boys and Joel and I headed to the coast.  Joel drove most of the way and we were entertained by “The Hobbit” on CD.  At some point I did remember that I really should phone Kelly and cancel quilting but I was already several hours down the road and I figured she would understand.
When we got to RM House there was a card and a gift certificate for The Keg for Joel.  Thanks Gramma, your amazing!  I think he'll wait to use it until Grant is down with him in a few weeks.
This morning Joel was up early and feeling adventurous so we went out early and did a little shopping.  He wanted to go exploring but we didn't have much time.  This is a house we pass often in our travels down here.  It reminds us of fairy tales and make us think there is still some magic around. (Or we have just been listening to way too much Tolkien and we think it looks like a Hobbit house) 
 Joel quickly checked his emails before heading in for his procedures. 
Before heading to the hospital we stopped at Whole Foods so he could pick out a meal.  It was noon and he was starving by the time the bone marrow and spinal tap were finished.  I wonder if he remembers eating it or if he was still so drugged up that I could play trick on him now......" no, you ate all your chocolate first.  You didn't save any of it...."
At the beginning of December Joel agreed to take part in a cancer study.  There were two arms of the study, the first being  that he would receive the standard treatment for leukemia and the second being that he would mostly receive the standard treatment but one part would be modified.  He was randomly put onto the second arm.  He is now at the part of the treatment where he would receive the modified version,  high dose methotrexate .  But now the studies have shown how highly effective this treatment is and it is now the standard treatment given to all patients. 
 He had his bone marrow biopsy and spinal tap this morning, samples will be sent to the States to be tested and we should have the results in about a week or so.  He will have several kinds of chemo today, vincristine, 6MP and spinal methotrexate.  He will be hydrated for 6 hours and tonight he will start on the high dose methotrexate.  He will be monitored closely and then after 24 hours he will be given the antidote for it.  This sounds really cool in a story or movie but in real life.... not so sure.  He will have to stay in hospital and continue to be hydrated until they are sure that most of the chemo has flushed out of his system, 3 -6 days is what it normally takes.  If all goes well, we are hoping to have him home by the weekend.
For the next while, he will not be allowed to do much.  Playing guitar will blister his fingers, opening water bottles will do the same to his hands, even typing on the computer or using a pencil  will have the same effects.   He will have a great excuse for not getting his homework done.  Walking may cause blister on his feet.  He is supposed to drink lots of ice water so that the blood vessels in his mouth and digestive system restrict in order to lessen the the chance of getting mouth sores which is the most likely of the side effects.  I have been told that blood count might drop but it is a lesser side effect as are seizures and signs of stroke.  Joel is taking glutamine to help prevent the mouth sores and the Dr. just told us that some people say that vitamin B6 helps with the side effects. 
Joel is sleeping right now which is probably a good thing.  He will be woken up every 2 hours over the next few nights.  I should be sleeping too.  I have so lost my groove.  I am forgetting things left, right and center.  I caused someone else to be angrily honked at in busy Vancouver traffic this morning.

Today I am thankful for chocolate covered honey (my new favorite), a small car in a big city, Joel feeling adventurous again, and mostly for the families at RM House who have been thru this all and can tell me what to expect and what questions to ask.

Thursday, March 24, 2011

No where to go but up

Joel had blood work done again on Monday to see if he was ready to start treatment again.   The results were interesting, to say the least.
Hemaglobin was 118, up from 97 the week before.  Anything over 100 means his mood is good.
Platelets were 444, up from 235.  They are almost in the normal range.
White blood count was 1.3, up from 1.1.
ANC dropped again to 0.03, down from 0.2.  They needed to be above .75 in order to start treatment.  Joel's nurse said that they can only go up now….. but I think she said that last week too.   So, with the ANC this low he is at a very high risk of catching any kind of infection and getting a fever would be extremely dangerous.  I am doing my best to keep him close to home and if he goes out he must wear a mask (please yell at him if you see him out without one).
So, on the positive side, Joel gets to spend at least another week at home.  He will have blood work done again on Monday March 28th to see where he is at.  The nausea started to disappear on Sunday so he is back to eating three meals a day again.  This morning he even cooked himself breakfast, always a good sign.
The side effects from the vincristine seem to be wearing off.  This morning he ran up the stairs two at a time.  He tried that once shortly after getting chemo and it didn't work very well.  He has also gotten the feeling back in his fingers so he has been playing his guitar more.  His hair has grown another 1/8th of an inch.  It is all good.
Adam convinced his brothers to join his diabolical plot to take over the world.  It ended in a three way tie.  They agreed to peacefully walk away and work together……. for now.   Joel put up the trampoline and now Adam is up to his old tricks, jumping out of the tree and onto the trampoline……..

Joel's facebook posts

March 21
Haha, got yet another week at home! WOOT WOOT!!! Checked my blood again today, most are up nice 'n high except for one. The ANC count has to be up to .75 before treatment can start. last week it was .2 which is considered rock bottom. Now it's .03, sooo... still in the mask. BUT I GET TO STAY HOME!!! should be up next week though, can't really go anywhere but up from here aye!
March 15
Okay, here's the thing. I was going to go back to Van for a week as soon as my counts were up. We checked on Friday and the one count was just a tiny eeny weeny itsy bitsy bit to low to start so we figured we'd check again monday. It was practically garunteed that they would be high enough.  So we got all packed, ready to go, checked the blood again. Turns out that count is now completely rock bottom. So I get to stay home another week! :D So I'm stuck in a mask again, but it's worth it in my opinion!

Tuesday, March 15, 2011

On Monday…..

Monday morning,
my bags were packed

Joel's bags were packed

I went to the bank.
I filled up the car with gas.
I baked lots of extra bread for everyone left at home.
I had the car packed and ready to go. 
I finished eating all my chocolate cause I was heading to Vancouver and Whole Foods and I was counting down the minutes till I could stock up my stash.
And then Joel's blood count results came back. 

Platelets - 235, not bad
Hemaglobin - 97, down a bit
White blood cells - 1.1, down a bit
ANC - .2, way down.

So, Joel's treatment has been postponed again.
I spent  Monday afternoon unpacking the car.
Then I started baking.
I have noticed that when I am stressed or when things don't go my way, I end up in the kitchen.
And Grant started eating…… when I bake, he has no choice. 

So, Joel has another week to work on growing his hair out.
He started doing homework but ended up sleeping all day.
He did wake up for breakfast, lunch and supper though.
Adam worked on his diabolical plan to take over the world.
And Ari worked on his plan to……. actually, I'm not sure what his plan was.

Wednesday, March 9, 2011

This past week

On March 1st, Joel had chemo and a check up from his doctor.  Dr. D took one look at Joel's hair, laughed wickedly and told him he would soon take care of all the new growth.  Should we be afraid?  He also gave Joel the okay to come home so Joel and Grant drove home on Wednesday.   On Thursday he went to youth and saw all his friends.  On Monday he enjoyed the sunshine and a good book.
Tuesday was chemo at the hospital in Vernon.  Just vincristine so it was nice and quick.  Blood counts are staying about the same as last week so he didn't need any transfusions.  He is supposed to start the next set of chemo in Vancouver on March 15th so he will have to have blood work done again on Friday to see if his ANC counts have come up yet.

Joel has been getting some homework done.  He has also spent some time looking through some old pictures.  We have discovered the secret to why he is coping with the leukemia and his treatments so well.
First of all, he rarely had a room of his own.  First he had to share a room with this one.  She kicked out several of his teeth.  She also held him in a headlock while she yanked out others.  She would eat all of her ice cream and then she would eat his.  She would wake him up first thing in the morning by ripping off his covers.  She would rescue any stray animal that she could and hide them in her room…. hedgehogs, baby birds, mice.

Then he had to share a room with these two.  They would hide rubber snakes and spiders in his bed. When he did get his own room, it was also the guest room so whenever anyone came to visit he would be kicked out of his room.  People usually came to visit in the summer so he would move outside into a tent.  There the mosquitos would poke him and take half his blood…. not unlike what the nurses do now.
He was stuck with this one as his mother.  In a futile attempt to keep his weight up, I have been cooking all of his favourite foods…. fruit perogies, apple pie, lasagna, chicken fried steak.  Now he is nauseated at the mention of any of them.
But Joel was not all innocent either.  He built up his strength by holding his older cousin by the ankles, headfirst into the outhouse.  He also hid rubber snakes in his uncles bed.  He lit fires in the back forty and chased bears on the quad.  This boy is fearless…. except for when it comes to his mama cooking his favourite foods.

Tuesday, March 1, 2011

This is just a random picture that was taken of Joel the day before Christmas.

It really looks like he is arguing with Mrs. Clause.
Anyway, it made me laugh.  Howl actually.

Yesterday Joel spent the day at the hospital getting a couple of transfusions.  It took about 8 hours.  His count have started dropping rather quickly.  A week ago his hemaglobin was at 104 and yesterday it was at 89.  After 2 transfusions it was back up to 101.  Last Tuesday his platelets were at 176 and by Monday they had dropped to 32.  After the transfusion they were up to 58.  His white cell count went from 2.2 to 1.8 which is still alright.  They don't do white cell transfusions anyway cause those cells only live for up to 48 hours.  His ANC has gone from 1.72 to 1.16.  His weight has gone up a bit but he also seems to have shrunk????? Maybe they just measured wrong.  He had two more kinds of chemo today so his counts will continue to drop but the ANC is still above 1 which means that he is ok to go to the hockey game tonight.  The game is just for all the teens so Grant will drop him and the other kids from RM house off at the Hospital.  From there they will all take a shuttle to the game.  Because all of the kids are immune compromised to some degree, they get to watch the game from one of the boxes.  They also have several nurses who attend with them which makes me feel better as Joel will need to be monitored for any reactions from the chemo he received earlier in the day.
Then on Wednesday, if the weather behaves, Joel and Grant will head home.  His chemo treatment for next week has already been booked and will happen in Vernon.  This is the part of treatment we have been looking forward to.  He has at least 2 whole weeks at home, maybe longer if his counts don't recover on time.  We will take what ever we can get.