Two months ago Joel and I left Armstrong and drove down to Children's Hospital in Vancouver. Joel was happy and joking…. he was off for an adventure. I remember arriving at the hospital, dropping Joel off at the emergency department and driving off to find a place to park in a very big lot. I read through the parking rules but at that point my mind was mush and they made no sense to me. I got a ticket, parked the car and hoped it would still be there when I came back and I hoped that I would remember where it was that I had parked it. When I found my way back to the emergency department, Joel was registering at the front desk and then we were put into isolation since his blood counts were so low. If I remember correctly his white cell count was .80, his red cell count was 80 and his platelets were either at 45 or 65. We were then asked what felt like a thousand questions. Later in the afternoon Joel was admitted onto ward 3B, one of the oncology wards. Doctors and nurses came in and out continuously, tests were ordered and much blood taken. A lumbar puncture, first round of chemo and another bone marrow test were ordered for the following day. Everything was moving so fast and my head was spinning. I did not know where I was in the hospital or how to find the car and if I did find the car….. would I be able to find Joel again? I felt like a mouse in a very large maze.
The next day our nurse took us on a tour of both oncology wards as well as the oncology clinic where Joel would receive most of his treatments. I was more lost and confused than ever. When it was time for Joel's procedures, we met the surgeons and nurses and they talked us through what they were going to do. One of Joel's nurses said how lucky he was that the leukemia had been found when it was. She said that in a month from now (end of December), Joel would have been very sick and in two months from now (end of January), Joel would not be here anymore.
Anyway, here we are at the two month point. Joel still here and we are very thankful. He is at home until Wednesday and very grateful for a few days of normal life. He is doing very well with treatment and has been given a very good chance at beating this. Driving and parking in Vancouver has become old news. I can even venture out sometimes without using the GPS. I have no troubles now finding my way through all the hospital corridors and I have not lost our car yet.
But the point of all my rambling is, it has been two months and Joel is still here. For that, I am very grateful.
Sunday, January 30, 2011
Thursday, January 27, 2011
A Morning at the Hospital
Clinic at 8:00 this morning. Joel is MPO which means no food or drink so I let him sleep until it is time to go. Joel didn't have to be coaxed out of bed this morning..... maybe cause he is hoping to being paroled for a few days. The hospital was nice and quiet this morning, Joel was the first one here. First he was weighed, measured and blood pressure was taken. Weight was down by a kilo but that is not much of a surprise. It is hard to get more than 2 meals into Joel now as the nausea has hit with a vengeance. Next his port was accessed, anti nausea medication started and blood work done. We had to wait for some blood counts to come back before treatment could start but Joel was in the procedure room by 8:30 this morning. Sometimes he doesn't get in until after lunch.
After the lumbar puncture he will have to lay flat for at least half an hour in order to prevent a headache and I will head over to Starbucks to get him a coffee or chai tea.
The brown bag is Joel's hospital survival bag. The black one is mine. We find that the more we bring to the hospital, the quicker the procedure goes. The days we think we will be in and out quickly and we don't bring distractions, those are the days we seem to have complications and end up staying the whole day in clinic.
Inside Joel's bag is his laptop and reading material. This morning he read all his new facebook posts before being called in for procedure. I can't thank you all enough for all the encouragement you send him.
Inside mine.... quilting supplies
Reading material and lots of food for Joel. He is usually hungry and in a very good mood after treatment. He never remembers the jokes or the princess bandaids after. I will cut this short as he should be out of treatment soon. One more set of chemo after his hour of laying flat is finished. Then a meeting with the doctor to see if he can go home.
After the lumbar puncture he will have to lay flat for at least half an hour in order to prevent a headache and I will head over to Starbucks to get him a coffee or chai tea.
January 25,2011
Well, I've been hanging witha bunch of people lately. it's been great being with all of you guys! Treatments continue and at the end of next month the docs'll check where I'm at again. So just pluggin along right now, going through the w...orks. hopefully I'll get home for a visit here soon. Been a little moody lately, on and off, just feeling rather down and not really wanting to be all brave. Honestly I was wondering if i really did want to keep fighting. I saw a girl outside theh hospital a few weeks ago yelling something, mom said she was tired of getting poked, I now sorta see how she felt. Anywho, I was listening to Robin Mark today, and man that guy is good! His one song is called "When it's all said and done", and ya, not manly, but I cried. So ya, I'm doing good again! I needed that, i was trying to stand on my own and i can't. learned my lesson, lets see how long i remember it this time, aye? In Christ, Joel
Sunday, January 23, 2011
Week in review
Tuesday the 18th
Gramma came to visit. She drove into Vancouver at the beginning of rush hour and left at the end of rush hour. Now she knows when not to visit........ but it was a very nice treat for us to see her.
Wednesday the 19th
Joel slept lots but I managed to drag him out to Whole Foods in return for a smoothie. It is my new method of bribery...... If we go out, I will buy you a smoothie..... works every time.
Thursday the 20th
Chemo day. We had to be at the hospital for 8:00 am. It was snowing. I told Joel that we were fine cause we had winter tires, it was just all the other Vancouver drivers we had to worry about. Joel started the day with a lumbar puncture and a dose of chemo to his spine. When he woke up from that but was still somewhat affected by the drugs.... he was given another dose of chemo, two needles to the legs. He remembers the poke, but not the princess bandaids they put onto his legs. After three hours of being hydrated and monitored for reactions to the shots, he was given one more dose of chemo through the port and allowed to go home. Just before leaving we met a family from Salmon Arm who's daughter has just been diagnosed with leukemia. Her aunt is also Joel's science teacher so we knew the family was down here. It was nice to connect with them. Their clinic day is also Thursdays so we will be seeing them often. We made a quick stop at Whole Foods for a smoothie. Joel stayed in the car and fell asleep. When we got home to RM House, it was straight upstairs to bed. We also watched the movie Second Hand Lions.
Friday the 21st
Joel stayed in bed most of the day. I made him fruit perogies for breakfast but he made me take them away. The nausea has hit. I am lucky now if I can get two meals into him a day. A quick visit from the Goldenthals brought him back to life.
Friday the 21st
Joel stayed in bed most of the day. I made him fruit perogies for breakfast but he made me take them away. The nausea has hit. I am lucky now if I can get two meals into him a day. A quick visit from the Goldenthals brought him back to life.
Saturday the 22st
Joel decided to re-teach me how to play chess (it has been about 25 years since I have played). Here is Grants comment, pasted directly from the email I received.....When Joel teaches you chess be patient and don't run out of the room in anger, he might win, this is normal when you learn a new game.... Needless to say, I have not run out of the room or slammed any doors yet. We were pleasantly interrupted by friends visiting and we headed off to Metrotown where we rode escalators, gazed at people a floor below us through pools of water and did other exciting things that are not available to us in Armstrong.
We saw some Rock Stars...... no wait.... I think that is just Steph and Joel in disguise.
Friday, January 21, 2011
In The Beginning....
I want to post what we are doing and going thru daily but since we are starting this 2 months in, I would also like to go back and post a bit of what we have already been through. So please be patient with the back and forth of it all until I am caught up.
I knew something wasn’t right but I didn’t think it was anything serious. Joel was tired, he got a little sick and felt under the weather. He just didn’t seem to bounce back. Teenage boys are usually up for a good time. Joel would still go out with his friends but for the next day or two he would sleep all day on the couch. He still kept up with his school work, kept his grades up, played his guitar, continued to work 2 or 3 days a week, he went out with friends and to youth group every week.
In the middle of November I made him a doctors appointment and didn't give him a choice in the matter. He went for a quick check up on November 22nd and had blood work done on the 23rd. He was called back into the office on the 25th and diagnosed with Pancytopenia which just means that all his blood counts were low. We were told that it was most likely caused by a virus (maybe mono) and that they would like to do more tests. They did not think it was leukemia at that time due to his low white cell count. We went home and googled Pancetopenia and read thru the list of 20 things it might be. An appointment was made for Joel to have a bone marrow test done on the morning of November 29th. Joel was called back to the doctors office the same afternoon and was diagnosed with leukemia. His response was to laugh…. A private joke between him and Brayden. It was off to the clinic for a chest x-ray, home for a few hours, back to the hospital for more blood work, home for the night and then off to Vancouver in the morning. When we spoke to Children’s Hospital on the evening of November 29th, they said you will be coming down for more than a few days. Here it is the middle of January and we are planning our first few days home at the end of the month. It is all still a bit of a blur.
Who get’s leukemia? The exact cause in unknown but there have been many studies done and it has been linked to a few factors
1. Genetic factors - Kids that have been diagnosed with a syndrome or certain chromosomal abnormalities have a higher risk of getting leukemia then children who do not have these genetic disorders.
2. Environmental factors - exposure to radiation, toxic chemicals, prenatal exposure to x-rays, exposure to benzene (an industrial chemical), and certain types of chemotherapy have all been linked to childhood leukemia.
Studies have been done to see whether or not things like electromagnetic fields (power lines), mobile phones, exposure to herbicides or pesticides, jet fuel, mothers use of alcohol during pregnancy, diet rich in processed meat (hot dogs). But none of these studies have been conclusive.
Leukemia in some of these circumstances may occur in clusters.
3. Viral infection- Many researchers believe that a virus or a series of viral infections can cause a mutation (mistakes in DNA synthesis) in the developing cell. The body fails to recognize and destroy the new leukemia cell and soon it has invaded and taken over the body.
4. There is a possible link between leukemia and the way in which vitamin K supplements were given at birth. Children given an injection of vitamin K have a higher risk than children given the oral supplement.
My assumption is that #3 applies to Joel. I am currently looking into whether or not #4 applies.
A little extra information -
Benzene is a known Carcinogen. In the past it was used for decaffeinating coffee, as an aftershave and as a solvent. Today it is still used as an additive to gasoline but in much lower doses than it once was. It is also used in the making of plastics, nylon, adhesives, pesticides, rubber, dyes, drugs, explosives and detergents. It is also used by oil refineries, gasoline related industries, chemical plants and shoe manufactures. Tobacco smoke, motor vehicle exhaust and industrial emissions also contain low levels of benzene.
I knew something wasn’t right but I didn’t think it was anything serious. Joel was tired, he got a little sick and felt under the weather. He just didn’t seem to bounce back. Teenage boys are usually up for a good time. Joel would still go out with his friends but for the next day or two he would sleep all day on the couch. He still kept up with his school work, kept his grades up, played his guitar, continued to work 2 or 3 days a week, he went out with friends and to youth group every week.
In the middle of November I made him a doctors appointment and didn't give him a choice in the matter. He went for a quick check up on November 22nd and had blood work done on the 23rd. He was called back into the office on the 25th and diagnosed with Pancytopenia which just means that all his blood counts were low. We were told that it was most likely caused by a virus (maybe mono) and that they would like to do more tests. They did not think it was leukemia at that time due to his low white cell count. We went home and googled Pancetopenia and read thru the list of 20 things it might be. An appointment was made for Joel to have a bone marrow test done on the morning of November 29th. Joel was called back to the doctors office the same afternoon and was diagnosed with leukemia. His response was to laugh…. A private joke between him and Brayden. It was off to the clinic for a chest x-ray, home for a few hours, back to the hospital for more blood work, home for the night and then off to Vancouver in the morning. When we spoke to Children’s Hospital on the evening of November 29th, they said you will be coming down for more than a few days. Here it is the middle of January and we are planning our first few days home at the end of the month. It is all still a bit of a blur.
Who get’s leukemia? The exact cause in unknown but there have been many studies done and it has been linked to a few factors
1. Genetic factors - Kids that have been diagnosed with a syndrome or certain chromosomal abnormalities have a higher risk of getting leukemia then children who do not have these genetic disorders.
2. Environmental factors - exposure to radiation, toxic chemicals, prenatal exposure to x-rays, exposure to benzene (an industrial chemical), and certain types of chemotherapy have all been linked to childhood leukemia.
Studies have been done to see whether or not things like electromagnetic fields (power lines), mobile phones, exposure to herbicides or pesticides, jet fuel, mothers use of alcohol during pregnancy, diet rich in processed meat (hot dogs). But none of these studies have been conclusive.
Leukemia in some of these circumstances may occur in clusters.
3. Viral infection- Many researchers believe that a virus or a series of viral infections can cause a mutation (mistakes in DNA synthesis) in the developing cell. The body fails to recognize and destroy the new leukemia cell and soon it has invaded and taken over the body.
4. There is a possible link between leukemia and the way in which vitamin K supplements were given at birth. Children given an injection of vitamin K have a higher risk than children given the oral supplement.
My assumption is that #3 applies to Joel. I am currently looking into whether or not #4 applies.
A little extra information -
Benzene is a known Carcinogen. In the past it was used for decaffeinating coffee, as an aftershave and as a solvent. Today it is still used as an additive to gasoline but in much lower doses than it once was. It is also used in the making of plastics, nylon, adhesives, pesticides, rubber, dyes, drugs, explosives and detergents. It is also used by oil refineries, gasoline related industries, chemical plants and shoe manufactures. Tobacco smoke, motor vehicle exhaust and industrial emissions also contain low levels of benzene.
Wednesday, January 19, 2011
chocolate critique
Just for the fun of it, Joel and I have decided that it would be in everyone's best interest if we sample and critique a chocolate bar. I was thinking weekly would be a good time frame in hopes that it would get me off my daily chocolate habit.
We will try different stores each week in our effort to broaden our knowledge of Vancouver streets. Today we chose Mein Hardt on the corner of Granville and 14th Ave. http://feedyourcuriosity.com/home/meinhardt_homepage.1.html
Today we made a very hard decision and went with Dolfin 88% Dark from West Africa. Until today I did not know that Chocolate was grown in Africa. The bar though was made in Belgium.
So first we rate the packaging.... clean, classy and simple lines.
Priced at $3.49 and weighing in at 30 grams it is not big enough to share.....
We did share and I am left wanting.
Are you tempted yet?
A little known fact is that good quality chocolate always makes me sneeze.
No, I am not allergic..... I would never admit to that.
Anyway, the sneeze factor on this one was very high.
A solid resounding snap when bitten into. Neither overly sweet or too bitter. Satisfying chocolate taste which slowly melted over the palate.
We give this one a thumbs up
Monday, January 17, 2011
Week in review
Second week into consolidation.
Joel was given the okay to be paroled and he was hoping to go home for three days in between treatment. But due to the weather we decided not to risk it. So Monday morning we went on a field trip to Long and Mcquaid. Joel did lots of drooling and tried out several electric guitars. He walked out of the store with a Fender Jazzmaster. She does not have a name yet but I know he is cuddling up with her every time I am not looking.
Tuesday, Joel got up and had breakfast and then went back to bed. He got up for lunch and then went back to bed. He got up for supper and I forced him to stay away till bedtime.
Wednesday, Joel was well rested. After Breakfast Joel started working on his last physics test. Then Uncle Stephen came for a visit and distracted him. They drooled over the guitar for awhile and Joel even let Uncle Stephen play a little bit. Auntie Rachel also came later in the day and brought home made soup..... yum. They both stayed for supper as the Temple Shalom came and put on a family dinner. Roasted chicken, quiche, rice and mushrooms, lentil soup, lentil salad, spanakopita, banana bread and cake.
Thursday we were at the hospital at 9:00 am for a lumbar puncture and spinal chemo. Joel had to lay flat for an hour after. Then he got his next chemo (ARAC). Stopped at Starbucks for a Venti Chai Tea Latte as they do wonder for the headaches that star 5 minutes after chemo treatments. Then it was home for a rest and to play the new guitar.
Friday we went on another field trip... off to explore Granville Island. It took me driving, the GPS and Joel telling me where to turn but eventually we arrived. There Joel found a picure of the woman of his dreams. Or maybe it was just a picture of any woman but she was holding the food of his dreams.
And I saw the school of my dreams
We saw a dream house
We saw lots of amazing little stores and could have emptied both our bank accounts but we left with only a freshly baked bagel, covered in cream cheese and dripping with jam.
Then it was off to the hospital for chemo. We were in and out quickly.... less than half an hour. Joel started limping within 5 minutes of treatment and the headache started. We picked up a chai tea and then it was back to RM House for a nap.
Saturday we went to Mein Heart to pick up some groceries. Then it was off to chemo. The hospital was busy so Joel had to wait for treatment and for blood results. Red counts were low so that means transfusions tomorrow. The nurse told him to go eat some steak so it was off to the Keg for supper. Prime rib and horseradish.....just following nurses orders.
Sunday was a long day at the hospital, 10:00am till 4:00pm. Chemo and then two units of blood. I think the first unit was from a very grumpy and unhappy person but the second seemed to be from someone with a much happier disposition. After the hospital we drove downtown and got takeout from Gorilla Foods, a raw food restaurant... pizza, burger, shakes and chocolate cake. All yummy.
Monday, Joel finished up his physics test. I think he is dragging it out as long as possible just because he doesn't want it to end. We will go mail off his last physics unit today and hopefully go for a cruise along the ocean. The sun is shining today and we will look for a beach. Or maybe not.... it looks like Joel is sleeping again.
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