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.
Wednesday, July 13, 2011
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.
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.
Tuesday, May 31, 2011
Back in Vancouver
Joel and I came back to Vancouver yesterday. We stopped in Abbotsford at Wendy and Ray's house for tea. Nathan and Ellie were home and then Rachel and Kaitlyn stopped by. Ellie and Kaitlyn were both fighting over Joel's attention and he commented that it would be nice if girls his own age would act that way. I am sure he will kill me for writing this.
I didn't bring the camera with me today so there won't be any pictures. Yesterday Joel and I stopped at Whole Foods to pick up meals for the next few days. He was shocked that I didn't buy any chocolate as I am trying to cut down my daily chocolate habit to just a few days a week. My theory was that if I did not have any chocolate on me, then it would be much easier not to eat any. He told me that I have an obligation to some of you... so, later on in the week I will go on a chocolate hunt. I promise.
10:30 a.m. - Joel is presently sleeping. He just had an LP done. When he wakes up I will go make his appointments for Fridays chemo and go pick up all his new prescriptions.
Okay, so Dr. D just came in and interrupted my typing. We had a good chat..... everything is going very well. We are six months into treatment and we have about six more months of intensive treatment to go. After that will be 3 years of maintenance where life should get close to normal again. We had a good chat about radiation. That is probably the part of all this that scares me the most. I read an amazing book "The Emperor of All Maladies, A Biography of Cancer" and it really made me understand the importance of Joel having the cranial radiation. But Dr. D said that he would set up a meeting with the specialist in September or October so we could talk more about it before Joel has to have that done.
When Joel was first diagnosed I started looking for blogs about kids will A.L.L. so that I would know what to expect, what questions to ask and an idea of what daily life would look like. It was very hard to find anything. That is one reason I wanted to do this blog but those are the very things I find it hard to write about. It is very hard to write about the side effects of chemo and how it is affecting Joel's body because it is very personal and also it is really not the things I want to acknowledge. I am somewhat in denial and I plan on staying there for a while. Joel had an amazing weekend at family camp and that is the kind of thing I would rather focus on. Not the fact that two weeks before he couldn't stay sitting up when he had visitors, or that after chemo he just curled up on the bed and lay there for the rest of the day. Now his appetite is back and he can eat half a rhubarb crisp topped with ice cream in one sitting and I forget about the days where I feel lucky if I can talk him into eating two perogies. I know he is physically feeling really bad when he is given two Canucks playoff tickets which are really close to the ice and he tells the nurse to find another kid to give them to.
So it is now 11:10 am and Joel is just waking up. Time for more chemo. He had intrathecal methotrexate - chemo in the spinal fluid which is supposed to keep the leukemia from hiding out in the brain. It can cause nausea, low blood counts, sensitivity to the sun, mouth sores, organ damage and headaches. Those are just a few of the side effects.
Now he is getting vincristine (which is derived from the periwinkle plant) and some of the side effects are pain, numbness and tingling in the fingers and toes, weakness, hair loss.... and the list goes on.
And he is getting doxorubicin (which is red and turns the urine bright red for the next few days). Some side effects can be low blood counts, nausea, hair loss, mouth sores, heart damage.... and the list goes on.
Twice a day now he also gets dexamethasone. Side effects can be mood changes (extreme irritability to rage), increased appetite and food obsessions, indigestion, sleeplessness, nightmares, loss of bone mass which can cause extreme pain... and the list goes on.
He also gets ranididine to counteract the indigestion caused by the dexamethasone.
I go over all the side effects so that I know what to watch for. I am currently rereading the books "Childhood Leukemia" and "Childhood Cancer". They make much more sense to me now after reading "The Emperor of All Maladies, A Biography of Cancer".
4:00 p.m. Chemo is finished for the day and now I will head back to my happy place of denial and give you some stories that you can really laugh about. They might horrify my mother, mother in law and gramma but they will make my sisters laugh till they pee their pants.
The day we leave for Vancouver it is always very busy and rushed. Treatment is always count dependant so I take Joel for blood work first thing in the morning and then we wait for the results. Yesterday I made blueberry muffins and started baking bread so that Grant and the kids would have a few things to eat while Joel and I are gone. Adam wanted me to make another rhubarb crisp since Joel and finished up the last one. I had just gotten the crisp into the oven and set the timer. The phone rang and Joel's results were good so it was time to leave. I quickly packed some clothes, a sweater in case it was cool and a pair of shorts just in case the sun decided to shine, some books and my quilting so that I would have things to do. The drive down was nice, mostly sunny, a little hail and a bit of rain. We stopped in Abbotsford for gas and then went to Rachel's house but she wasn't home and we headed over to Wendy's. She served us tea and I think we made her late for choir practice. Joel and I got to Vancouver around 7:00 pm. We stopped at Whole Foods to stock up on meals and then went to check in at Ronald MacDonald House. Joel started making himself some supper and I phoned home to say goodnight to the boys and let them know we had arrived safe. I was tired and Joel watched a little t.v. but we went to bed quite early. I woke up this morning at 5:45, very refreshed and ready to do my couch to 5k. I had a drink and a little bit to eat. I like to run in the morning cause then I don't get a stitch in my side and there seems to be much less pain than if I run in the afternoon. I am on week 9 so I do a 5 minute warm up and then a 30 minute run and end with a five minute cool down. It was a lovely run, the streets are beautiful and lined with trees. I got back to RM house at about 7:15 am. Joel was still sleeping I had just enough time for a shower before getting him up and going to the hospital. I snuck back into our room to pick out some clothes and that is when I realized that I had forgotten to pack underwear. I was horrified..... just beside myself. I think I am still in shock. But that is not the end of it. I told Joel what I had done and that after chemo we were going shopping no matter what. Joel laughed and commented that at least I realized I hadn't packed any, unlike some people we know!!!!!! So, after chemo, when Joel was still giggling, he programed the GPS and it took us to No Man's Land. About an hour later I found a mall and made my purchase. You should be happy to know that my clothes have all gone thru the wash and are now in the dryer, I will be back to my normal self in a few minutes. And I don't think that I will ever forget to pack underwear ever again. See, it is much easier to post a humiliating story about myself than to write about Joel getting chemo.
I will try to take some pictures of our adventures tomorrow and maybe I will go hunting for chocolate.
I didn't bring the camera with me today so there won't be any pictures. Yesterday Joel and I stopped at Whole Foods to pick up meals for the next few days. He was shocked that I didn't buy any chocolate as I am trying to cut down my daily chocolate habit to just a few days a week. My theory was that if I did not have any chocolate on me, then it would be much easier not to eat any. He told me that I have an obligation to some of you... so, later on in the week I will go on a chocolate hunt. I promise.
10:30 a.m. - Joel is presently sleeping. He just had an LP done. When he wakes up I will go make his appointments for Fridays chemo and go pick up all his new prescriptions.
Okay, so Dr. D just came in and interrupted my typing. We had a good chat..... everything is going very well. We are six months into treatment and we have about six more months of intensive treatment to go. After that will be 3 years of maintenance where life should get close to normal again. We had a good chat about radiation. That is probably the part of all this that scares me the most. I read an amazing book "The Emperor of All Maladies, A Biography of Cancer" and it really made me understand the importance of Joel having the cranial radiation. But Dr. D said that he would set up a meeting with the specialist in September or October so we could talk more about it before Joel has to have that done.
When Joel was first diagnosed I started looking for blogs about kids will A.L.L. so that I would know what to expect, what questions to ask and an idea of what daily life would look like. It was very hard to find anything. That is one reason I wanted to do this blog but those are the very things I find it hard to write about. It is very hard to write about the side effects of chemo and how it is affecting Joel's body because it is very personal and also it is really not the things I want to acknowledge. I am somewhat in denial and I plan on staying there for a while. Joel had an amazing weekend at family camp and that is the kind of thing I would rather focus on. Not the fact that two weeks before he couldn't stay sitting up when he had visitors, or that after chemo he just curled up on the bed and lay there for the rest of the day. Now his appetite is back and he can eat half a rhubarb crisp topped with ice cream in one sitting and I forget about the days where I feel lucky if I can talk him into eating two perogies. I know he is physically feeling really bad when he is given two Canucks playoff tickets which are really close to the ice and he tells the nurse to find another kid to give them to.
So it is now 11:10 am and Joel is just waking up. Time for more chemo. He had intrathecal methotrexate - chemo in the spinal fluid which is supposed to keep the leukemia from hiding out in the brain. It can cause nausea, low blood counts, sensitivity to the sun, mouth sores, organ damage and headaches. Those are just a few of the side effects.
Now he is getting vincristine (which is derived from the periwinkle plant) and some of the side effects are pain, numbness and tingling in the fingers and toes, weakness, hair loss.... and the list goes on.
And he is getting doxorubicin (which is red and turns the urine bright red for the next few days). Some side effects can be low blood counts, nausea, hair loss, mouth sores, heart damage.... and the list goes on.
Twice a day now he also gets dexamethasone. Side effects can be mood changes (extreme irritability to rage), increased appetite and food obsessions, indigestion, sleeplessness, nightmares, loss of bone mass which can cause extreme pain... and the list goes on.
He also gets ranididine to counteract the indigestion caused by the dexamethasone.
I go over all the side effects so that I know what to watch for. I am currently rereading the books "Childhood Leukemia" and "Childhood Cancer". They make much more sense to me now after reading "The Emperor of All Maladies, A Biography of Cancer".
4:00 p.m. Chemo is finished for the day and now I will head back to my happy place of denial and give you some stories that you can really laugh about. They might horrify my mother, mother in law and gramma but they will make my sisters laugh till they pee their pants.
The day we leave for Vancouver it is always very busy and rushed. Treatment is always count dependant so I take Joel for blood work first thing in the morning and then we wait for the results. Yesterday I made blueberry muffins and started baking bread so that Grant and the kids would have a few things to eat while Joel and I are gone. Adam wanted me to make another rhubarb crisp since Joel and finished up the last one. I had just gotten the crisp into the oven and set the timer. The phone rang and Joel's results were good so it was time to leave. I quickly packed some clothes, a sweater in case it was cool and a pair of shorts just in case the sun decided to shine, some books and my quilting so that I would have things to do. The drive down was nice, mostly sunny, a little hail and a bit of rain. We stopped in Abbotsford for gas and then went to Rachel's house but she wasn't home and we headed over to Wendy's. She served us tea and I think we made her late for choir practice. Joel and I got to Vancouver around 7:00 pm. We stopped at Whole Foods to stock up on meals and then went to check in at Ronald MacDonald House. Joel started making himself some supper and I phoned home to say goodnight to the boys and let them know we had arrived safe. I was tired and Joel watched a little t.v. but we went to bed quite early. I woke up this morning at 5:45, very refreshed and ready to do my couch to 5k. I had a drink and a little bit to eat. I like to run in the morning cause then I don't get a stitch in my side and there seems to be much less pain than if I run in the afternoon. I am on week 9 so I do a 5 minute warm up and then a 30 minute run and end with a five minute cool down. It was a lovely run, the streets are beautiful and lined with trees. I got back to RM house at about 7:15 am. Joel was still sleeping I had just enough time for a shower before getting him up and going to the hospital. I snuck back into our room to pick out some clothes and that is when I realized that I had forgotten to pack underwear. I was horrified..... just beside myself. I think I am still in shock. But that is not the end of it. I told Joel what I had done and that after chemo we were going shopping no matter what. Joel laughed and commented that at least I realized I hadn't packed any, unlike some people we know!!!!!! So, after chemo, when Joel was still giggling, he programed the GPS and it took us to No Man's Land. About an hour later I found a mall and made my purchase. You should be happy to know that my clothes have all gone thru the wash and are now in the dryer, I will be back to my normal self in a few minutes. And I don't think that I will ever forget to pack underwear ever again. See, it is much easier to post a humiliating story about myself than to write about Joel getting chemo.
I will try to take some pictures of our adventures tomorrow and maybe I will go hunting for chocolate.
Saturday, May 21, 2011
Five things
First
Joel is finished with the high dose methotrexate. He has been sleeping in till 11:00 am everyday. His appetite is slowly returning. His mouth sores are healing and he is home until at least May 30th.
Second
Brianna got engaged.
She and Shane are planning to get married sometime this summer.
A date has not been set yet.
Third
Adam and Ari went to visit cousins in Abbotsford
Wars were fought and guns were fired.
A good time was had by all.
Fourth
We spent a day at the ocean and I didn't want to leave
Fifth
We spent an evening at the Vancouver Aquarium courtesy of Joel.
I think I finally found their natural habitats.
Monday, May 2, 2011
Another Fever
So, once again when Joel was just about to clear his 24 hours of being fever free..... he spiked another fever so we are still in hospital. Blood cultures were taken again but so far they aren't growing anything. The assumption then is that the fevers are caused by the chemo and not an infection. On the plus side, Joel cleared his methotrexate in record time.... less than 24 hours which is the fastest the nurses have ever seen anyone get it out of their system.
What I learned about methotrexate this time around is that it leaves the system through the digestive tract. Being toxic, poisonous and deadly, it damages and kills the cells it comes into contact with. So just like snakes shed their skin, after having methotrexate the kids shed the lining of their digestive system. Gross. Mouth sores and stomach pain are Joel's biggest complaints. One good thing about him having a fever and staying in hospital is that he is still getting fluid through the IV. He hasn't been eating or drinking much. I am running out of bribes.
Maybe things are starting to turn around for the better, today he ate a bite of lettuce, a small omelet and 4 ravioli. I bought him a cheesecake but he wouldn't even touch it. He denies this all of course and says that he ate way more.
I got another square for the Grandmother's Flower Garden quilt almost finished. I found a new chocolate flavor, salt and pepper. It was yummy. I put off running today because it was raining in Vancouver but then Rachel told me that if I am going to be in Vancouver and if I am serious about learning how to run, then I will have to learn how to run in the rain. That girl is so smart and I am glad I listened to her advice. I got soaked and looked like a drowned rat, but I had the best run ever. Now I want more chocolate.....
What I learned about methotrexate this time around is that it leaves the system through the digestive tract. Being toxic, poisonous and deadly, it damages and kills the cells it comes into contact with. So just like snakes shed their skin, after having methotrexate the kids shed the lining of their digestive system. Gross. Mouth sores and stomach pain are Joel's biggest complaints. One good thing about him having a fever and staying in hospital is that he is still getting fluid through the IV. He hasn't been eating or drinking much. I am running out of bribes.
Maybe things are starting to turn around for the better, today he ate a bite of lettuce, a small omelet and 4 ravioli. I bought him a cheesecake but he wouldn't even touch it. He denies this all of course and says that he ate way more.
I got another square for the Grandmother's Flower Garden quilt almost finished. I found a new chocolate flavor, salt and pepper. It was yummy. I put off running today because it was raining in Vancouver but then Rachel told me that if I am going to be in Vancouver and if I am serious about learning how to run, then I will have to learn how to run in the rain. That girl is so smart and I am glad I listened to her advice. I got soaked and looked like a drowned rat, but I had the best run ever. Now I want more chocolate.....
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