Tuesday, July 26, 2011

Chemo in Vernon

Joel went to Vernon this morning to get his Vincristine.  His counts were all so low so he had to go back for a transfusion.  Platelets were fine, around 120 but that was because he had a transfusion a week ago.  Hemoglobin was 77 so that is the cocktail he gets today.  White cells were at 0.4 which means his ANC will be next to nothing.  So, Joel will be staying home tonight and not going out with friends as previously planned.  I don't think he will protest too much or give me puppy eyes as he is feeling wretched and has been throwing up all day.
So this was the last chemo for the Delayed Intensification I phase.  Joel is scheduled to start Interim Maintenance II on August 4th but chances are his counts will not be recovered by then as they are still in a downward spiral.  Interim Maintenance II will take 57 days and it consists of Methotrexate every 10 days, but not in dangerously high doses as last time so he will not be needing any antidotes.  He will also get Vincristine every 10 days, spinal methotrexate on days 1 and 31, and PEG-Aspariginase on days 2 and 22. The PEG-Aspariginase is now being given in a drip through the port instead of two needles in the legs.  Joel prefers the drip plus it is much safer as with the needles, the whole dose is given instantly and if a reaction occurs it is more severe.  With the drip method the injection can be stopped as soon as a reaction is noticed.

Tuesday, July 19, 2011

Heading Home

So after a dose of Vincristine,  Peg-Asperaginase  and a transfusion of platelets, Joel is on his way home.  He should arrive home close to midnight.  His counts have fallen drastically, platelets were at 10 this morning and hemoglobin was somewhere in the 80's so he will probably need to get more transfusions from Vernon hospital.  Joel was hoping to spend some time helping the guys out at camp over the next few weeks but I think I will be using the contract he gave me and I will keep him close to home.  I am a mean, mean mom.

Sunday, July 17, 2011

Joel's boring week.

I think Joel has had a pretty good week.  He hasn't gone out or done anything exciting this week due to his feeling so tired and his blood counts being so low.  He has been sleeping till noon most days and also having an afternoon nap.  His hair is starting to grow back, just in a little patch on the back of his head.  We have been teasing him about trying to start a new trend.  He had some nausea and headaches during the week but I think it is starting to get better.  I have noticed that most of the kids going through treatment at RM House just want pasta when they start to feel sick.  Joel is no different.  If we want him to eat then we need to stock up on mac and cheese, ravioli, perogies and anything with noodles.  His next treatment is on Tuesday, shots in the legs and then he should be able to come home for about two weeks.  

Wednesday, July 13, 2011

Mosquitos

A few days before Joel left for Vancouver, Bryce rubbed Joel's balding head and pondered some very deep thoughts.  He came to the conclusion that any mosquito that bit Joel must fly off and die shortly thereafter.  I laughed hysterically but came to my own conclusions concerning the matter.  I thought that after biting Joel, the mosquito would fly home in a weaving and dangerous manner, get violently ill, and swear that he would never touch the stuff again.  But now that Joel is gone, the mosquito population here at home has quadrupled and I am beginning to think that Bryce's conclusion was  the correct one.
Joel please come home quickly.  I miss you and I desperately need you here to control the mosquito population.

Tuesday, July 12, 2011

Chemo

Joel had another spinal this morning only this one was done without any anesthetic.   He has been offered the choice to have some of the chemo done in Kelowna but they don't have anyone to do the anesthetic so today was a trial run to see if he could handle it while being awake.  He did fine, which means that instead of going down to Vancouver every 10 days during August and September, he will only have to go down every 3 weeks or so.
Last Friday while at clinic, one of the nurses offered Joel two tickets to the B.C. Lions football game.  He and Grant went that evening.  They had front row seats, right behind the cheerleaders.  They said it was very loud and rowdy but they enjoyed themselves immensely.  On Saturday night they went to a ball at the Western Bay Front.  Then they went to the free concerts at Stanley Park.  On Sunday they went to church and then hung out with Stephen and Keenan.  I was so very jealous.
But I am happy that Joel was able to get out and have so much fun last week cause now his counts are dropping fast and he won't be allowed out.  We always fight about him wanting to go out when his counts are low so I told him I wanted a signed agreement in writing.  The following is what I got from him.

The signer of this document does agree upon the limitations and boundaries placed upon him by his legal guardians due to the current circumstances.  This document recognizes the conditions placed upon the signer when he is medically labelled and diagnosed as being neutropenic.  Such restrictions will occur when the signer's neutrophils are below 0.5 with the restrictions being quarantined to the house or only in the presence of a limited number of healthy people in a sterile environment.  Differing restrictions will occur when the signer's neutrophils are between the points of 1.0 and 0.5.  Restrictions in this scenario will be the ability to go out into public though with a mask in the presence of crowds or any with the least kind of sickness.  Said restrictions may be lifted only in circumstances in which both legal guardians agree.  Begging, puppy eyes, bribery and blackmail are allowed on the part of the signer.  This document will remain in effect until the medical phase of Maintenance does begin.

So, there you have it.  I have the signed document in my possession and I can and will use it in a court of law.

Monday, July 11, 2011

Oh to have a wife

So,
every summer when the strawberries season comes to a peak
My sister Rachel packs up her 4 kids and comes to visit.
It is a yearly tradition.
I get up every morning at 5:00 am and go pick berries.
Rachel gets the eight kids in the house up and fed.
She washes all the berries that don't sell and she fills my freezer and hers with strawberries for the winter. 
When I come into the house I put my dirty clothes in the wash.  
There is food waiting for me on the table.
The kids tell me all the exciting things Aunty Rachel let them do.
They tell me about who fought with whom and which ones forgave each other.
They tell me about all the adventures they had and about all the unfair chores they had to do.
Then I go outside and work some more.
Later in the day when I come in my clothes are clean, dried and folded.
Today Rachel and her kids are heading home.
I am going to miss them.
The house is going to seem very empty with only me and three kids.
And I come to the realization that a man with a wife is one of the luckiest creatures in the whole wide world. 

 Adam will miss his trusty sidekick salesman.
 As well as all the contests…
Who was the fattest, skinniest, strongest, smartest.
 The epic water fights.
And we dropped a very apprehensive but still excited Ari off at camp.

Tuesday, July 5, 2011

A Good Month

Sorry I haven't posted lately.
Joel was home most of June and life has started to feel normal again.
Maybe it is because I have been working in the garden.  Having my hands in the dirt seems to ground me. 
Our big news of the month is….

Joel graduated.

My mother-in-law came to visit and she brought me dark chocolate.  Then my mom came and helped pick strawberries with me.  Now my sister and her kids are here.  I am a very lucky and blessed girl.

About a week ago I ran my fingers thru Joel's hair and ended up with a handful of hair.  We knew it was coming so Grant buzzed what was left.   Then Joel buzzed Grants hair.  Adam and Ari said they would shave their heads if I paid them $100.  They chickened out when I got down the piggy bank and started counting out all the coins. 

Joel was supposed to go to Vancouver a week ago but his counts weren't high enough so we got to keep him home an extra week.  On Monday his counts were all nice and high so he and Grant headed down to the coast.  Today he started the day with methotraxate in the spine, then cyclophoshamide and ARAC in the port, and he started a new oral chemo - thioguanine.  It was a full day in clinic, he started at 8:00am and finished around 5:00pm.  Then it was off to The Keg for supper.  He needed to get a good meal in before the ARAC kicks in and he loses all interest in food.
On the home front….
the boys are climbing trees, watching adventure movies, exploring, sleeping in tents and doing all things boyish.  They were whooping it up till the wee hours of the night and they were up again at the crack of dawn with more whooping.
It might be a long, long week.