We have now been in Vancouver for a week and it has been interesting, to say the least. We have had quite a bit of fun at Ronald Mc Donald House; there are a lot of little kids here, so that is always a hoot. There were 5 four-year olds, 2 seven year olds, 2 two year olds, a one year old and Noah. He is really good with them so they try to engage him in any sort of play, which is fun for me to watch. Yesterday, one of the four year olds, Krystina, who has been through two cancer diagnoses in her short life, was writing up appointment slips for her dog, Bunella. He was having a few different treatments: "chemotherapy, radioextoma (a completely made-up word) and kidney function (they do bloodwork to test kidney function)." It was absolutely hilarious. She just cracks me up. Noah was very amused, but he played along and I am happy to report that Bunella is doing very well, all things considered.
We have had some really good dinners here, too. One day this week the owner of a candy store and her friends came and put on a Mexican fiesta, complete with maracas, sombreros, fake mustaches, music and a pinata! It was great, even though the pinata was indestructible, especially with so many little kids, it took a really long time to break!
Noah's friend, Jasper has been in the hospital the whole time we have been here and not up to playing any games, which made Noah very unhappy. We have been going to visit Jasper every day and every day Noah brings along his laptop and a game he wants to play with Jasper, but he was never well enough. Until tonight, when they played for a few hours and Noah fell asleep happy.
We have also spent quite a bit of time visiting Kiera, the little girl I wrote about a while ago, from Indonesia. She is now here in Vancouver, at Children's. It was a hard week; her parents received some very difficult news, so we did some crying together, but they are able to see the Lord's hand in their situation as well. They have been well supported by people here and in Indonesia, and are doing ok. They are very thankful to everyone who has been praying and fasting for Kiera.
For the most part, Noah's appointments have gone well; he gained a couple of kilos at home and only lost 500g this last week, he hasn't been too nauseated, he has had two LPs and they both went fine (and I got some really good photos- if you are curious what happens, I can email some photos to you, but be warned they do involve needles and spinal fluid...). He did not, however, have a good pentamidine treatment today. I had such high hopes, since the last one was so much better with Ativan, but no, he was very anxious, it took FOREVER and I became quite frustrated, which may or may not have helped him.... I don't know what else to do about this, he will need one of these every month until June 2014, so he had better figure out a way to handle it soon.... maybe if I could get my hands on some Ativan too, we would both be better off...
After the difficult afternoon, I needed a break and my friend Barb (Jasper's mom) provided the perfect opportunity - Celtic Fest! We went to a fabulous concert called Galway to Guadalajara. It was a melding of Celtic and Mariachi music and it was awesome! They played separately and together and it was so fun. There was a dance floor and a lot of people were dancing and it was perfect.
Noah was very happy to go to the hospital and hang out with Jasper and his dad, Stephen and play Star Wars. It was a win/win.
Well, I am going to bed. Tomorrow I am going to see my friend Elaine, who was medi-vac'd down here for a lot of tests. Please pray for her, she has been having terrible headaches and vomiting; her two CT scans were clear, so they first thought she also had encephalitis, but the drugs they were giving her for that weren't working, so they need more tests to figure out what is going on.
I will keep people updated on that situation as much as I can...
Good night!
Saturday, March 17, 2012
Wednesday, March 7, 2012
The last round....
Whooo Hooo! Here we go - off to Vancouver tomorrow to begin the last round of this difficult, intense first year of Noah's treatment. Bring it ON! I am ready.
We will be in Vancouver for the next four weeks; this round he will get
ARA-C, Cyclophosphamide, Methothrexate (in his spinal fluid) for the first two weeks or so, and Erwinia during the last two weeks. He is supposed to get the drug that caused his VOD (Thioguanine, or 6TG) but he won't be getting that, thank God! I am not sure what the doctor decided to do about that, he was considering two options: skip it all together, or give him a similar, better tolerated one, 6MP (Mercaptopurine).
I kind of hope they decide to skip it, because 6MP is a real pain. It has to be taken on a very empty stomach, two hours after eating and then after taking it, he has to wait one more hour before eating. It is very difficult to find a good 3 hour window like that in a day. I think if he has to take it, we will try as soon as he wakes up, then he can watch tv or whatever for an hour, then eat breakfast. I think that would be the easiest.
Noah will take 6MP every day for the entire two years of Maintenance, so it is important to figure out a good time for it. If you remember, he was on it in May when my sisters Denise and Julie came to visit us and we had to take the 6MP with us wherever we went or we would miss the opportunity to take it, so Noah had "Mall Chemo" and "Park Chemo" or "Whatever-We-Were-Doing-At- The-Time Chemo" He took it all in stride and we tried to make it fun. However fun not eating can be....
It also causes a lot of mucous to build up in his throat, which makes him throw up. He actually threw up every morning when he was on it. I felt really bad for him, but I told him it was good for him, now he will be better able to empathize when his future wife is experiencing morning sickness. We actually called it that, lol!
After this month of treatment, Noah should be able to start maintenance. In my mind, maintenance was like a dream, where we would be able to come back to Smithers and our life would be normal again. Noah would be able to go back to school, I would finally get my house clean, and we would only have to go to Vancouver for one day a month for the next two years. In theory, this is what should happen. (well, maybe not the house thing - I have struggled with that for years, it really would be a dream if THAT happened, lol!) I am trying to not get my hopes up, though, because a lot of the kids I know who have recently begun maintenance have not had smooth transitions. I hear it takes about 3 or 4 months before the counts recover consistently for treatments to happen on their prescribed days. Some kids have had such low counts they haven't been able to have any treatments for quite a while. I have decided to expect a bumpy road. I mean, nothing has gone smoothly for Noah so far, why should I expect this to be any different? : )
I have also lightened up about Noah returning to school this year. He is doing fine and generally keeping up in his studies, so if he doesn't go back at all this year, and just rejoins his class for grade 7, we aren't going to stress about it. The only class in which he may struggle is French, but he picked it up really quickly before and I'm sure he will again. Tom can give him a crash course in the summer, so he won't be too far behind.
Today when I picked up Noah's results from the lab, I didn't know what was going to happen; usually I can take one look and see if we are going or not. For treatment, Noah's white blood cell count has to be 0.75 or higher (today it was 2.0) and his neutrophil (infection fighting white blood cells) count also has to be above 0.75. Today his neutrophils were at 0.7. He was short 0.05 neutrophils (X 1,000,000,000 if we are going to be exact) I didn't know if that was enough to keep us here for another week or not. After a bit of consultation, the nurse called and said we should come because probably by Friday he will be over that threshold. We'll see. So we are flying out in the morning and going to the hospital for treatment on Friday, for an all day affair.
I will let you know how it all goes... to be continued....
We will be in Vancouver for the next four weeks; this round he will get
ARA-C, Cyclophosphamide, Methothrexate (in his spinal fluid) for the first two weeks or so, and Erwinia during the last two weeks. He is supposed to get the drug that caused his VOD (Thioguanine, or 6TG) but he won't be getting that, thank God! I am not sure what the doctor decided to do about that, he was considering two options: skip it all together, or give him a similar, better tolerated one, 6MP (Mercaptopurine).
I kind of hope they decide to skip it, because 6MP is a real pain. It has to be taken on a very empty stomach, two hours after eating and then after taking it, he has to wait one more hour before eating. It is very difficult to find a good 3 hour window like that in a day. I think if he has to take it, we will try as soon as he wakes up, then he can watch tv or whatever for an hour, then eat breakfast. I think that would be the easiest.
Noah will take 6MP every day for the entire two years of Maintenance, so it is important to figure out a good time for it. If you remember, he was on it in May when my sisters Denise and Julie came to visit us and we had to take the 6MP with us wherever we went or we would miss the opportunity to take it, so Noah had "Mall Chemo" and "Park Chemo" or "Whatever-We-Were-Doing-At- The-Time Chemo" He took it all in stride and we tried to make it fun. However fun not eating can be....
It also causes a lot of mucous to build up in his throat, which makes him throw up. He actually threw up every morning when he was on it. I felt really bad for him, but I told him it was good for him, now he will be better able to empathize when his future wife is experiencing morning sickness. We actually called it that, lol!
After this month of treatment, Noah should be able to start maintenance. In my mind, maintenance was like a dream, where we would be able to come back to Smithers and our life would be normal again. Noah would be able to go back to school, I would finally get my house clean, and we would only have to go to Vancouver for one day a month for the next two years. In theory, this is what should happen. (well, maybe not the house thing - I have struggled with that for years, it really would be a dream if THAT happened, lol!) I am trying to not get my hopes up, though, because a lot of the kids I know who have recently begun maintenance have not had smooth transitions. I hear it takes about 3 or 4 months before the counts recover consistently for treatments to happen on their prescribed days. Some kids have had such low counts they haven't been able to have any treatments for quite a while. I have decided to expect a bumpy road. I mean, nothing has gone smoothly for Noah so far, why should I expect this to be any different? : )
I have also lightened up about Noah returning to school this year. He is doing fine and generally keeping up in his studies, so if he doesn't go back at all this year, and just rejoins his class for grade 7, we aren't going to stress about it. The only class in which he may struggle is French, but he picked it up really quickly before and I'm sure he will again. Tom can give him a crash course in the summer, so he won't be too far behind.
Today when I picked up Noah's results from the lab, I didn't know what was going to happen; usually I can take one look and see if we are going or not. For treatment, Noah's white blood cell count has to be 0.75 or higher (today it was 2.0) and his neutrophil (infection fighting white blood cells) count also has to be above 0.75. Today his neutrophils were at 0.7. He was short 0.05 neutrophils (X 1,000,000,000 if we are going to be exact) I didn't know if that was enough to keep us here for another week or not. After a bit of consultation, the nurse called and said we should come because probably by Friday he will be over that threshold. We'll see. So we are flying out in the morning and going to the hospital for treatment on Friday, for an all day affair.
I will let you know how it all goes... to be continued....
Monday, March 5, 2012
One Year In...
I realized tonight that today is the first anniversary of Noah's diagnosis.
It went by so fast....
So much has happened.
It has been interesting to go back through the blog and remember all the fun times and also the not so fun times. To think about all the people we have met along this journey who have touched us forever.
Also to think about the people we already knew who showed us so much love and support and who have also touched us forever.
I am not really sure what to say or how to document this day - not yet, but I do know that without the Lord's hand in all of this, it would have been so much different. He has blessed us so richly in so many ways, we cannot even begin to recount! He has answered many uttered and many unspoken prayers, and shown his great love for us in those answers.
I used to doubt the goodness of God.
I did. I remember reading through The Purpose Driven Life by Rick Warren, and a quote jumped out at me. "God's ultimate goal for your life on earth is not comfort, but character development..." Which led me to the conclusion that everything in my life happens to teach me a lesson. I began to approach life with the view of God as detached teacher, and an authoritarian one, to boot. In my mind, I twisted the above quote even further to say, "God isn't interested in my happiness, he is interested in my character."
I do think that God uses the consequences of my actions to teach me a lesson, but I am not so sure about how he uses my circumstances ( although there is always something to learn!). I used to be afraid of what God would do in my life to get my attention fixed on Him, where it belongs. I literally feared God, and quite honestly felt suspicious of Him, always trying to second - guess His motives in every circumstance in my life.
When Noah was diagnosed last March, I thought, well, here it is - God is trying to get my attention. My personal devotion time had dropped off, I had kind of backed off my devotion to Him since starting my new job and not being involved in my Women's Bible Study, where I had been a leader. I thought that he was using my child to teach me a lesson -"Don't ignore me!"
He was teaching me a lesson, but I couldn't have been more wrong about what it was.
He has been teaching me all year about His great Love.
It has been shown the most clearly through His people. We have been blown away by the support we have received from people in our church and Christian School community, financial and otherwise, but really, the LOVE people have shown is by far the best part. I am so touched by people who come up to me and hug me with tears in their eyes, asking me about how we are doing; they honestly care. I actually can't go anywhere in Smithers without people stopping me to ask us how we're doing. Meals show up at our house every day. Cards and gifts from people we don't even KNOW, The day of Noah's diagnosis, Tom was here in Smithers, we were in Vancouver, and a parent from our school approached Tom and said, "We bought you a flight. Go." That is LOVE (it still makes me tear up to think of that moment). Grade 11 students from the class in which I used to work organized a benefit concert, where anyone who wanted to could come and share their gifts and raise money for us - that is love! (and a LOT of talent, as well!) Four girls from a family dear to us decided to cut their amazing, beautiful hair and donate it and raise money for flights for us while doing it - that is LOVE. The Sausage Factory, a local store, put a box with Noah's picture on it beside their till and people who shopped there kept filling it with coins for a whole year - that is LOVE. There are countless examples of God showing us His love through other people.
He also began to work in my heart. One example of how he began to reach me, happened when Noah had c.Difficile and we couldn't stay at RMH. We were booked in at Easter Seals for the weekend. Don't get me wrong, I appreciate Easter Seals, it is a good place to stay, but it is old and kind crumbling, it smells bad and most of the rooms are so old they just seem dirty. I had heard stories about bedbugs (and actually seen evidence of them there - no bugs, but they had been in that room -ugh...) so I was really reluctant to go there.
They do have 4 rooms that have been remodeled, of the 50 in the building. I started praying, kind of half heartedly, "Please let us get a new room (and no bedbugs)!" with out really expecting God to answer.
Well, what do you know, but we got a New room! The House was packed and the only room available was a remodeled one! The room was gorgeous, new laminate flooring, maple cabinets, granite countertops, undermounted sinks and a flat screen TV! It was nicer than my house! I remember being so excited and surprised, but then I thought, "well, I prayed for it... I shouldn't really be surprised, should I? Doesn't God love me that much that he would answer that kind of prayer??"
The answer: of course He does. He cares about my happiness. AND my character.
It went by so fast....
So much has happened.
It has been interesting to go back through the blog and remember all the fun times and also the not so fun times. To think about all the people we have met along this journey who have touched us forever.
Also to think about the people we already knew who showed us so much love and support and who have also touched us forever.
I am not really sure what to say or how to document this day - not yet, but I do know that without the Lord's hand in all of this, it would have been so much different. He has blessed us so richly in so many ways, we cannot even begin to recount! He has answered many uttered and many unspoken prayers, and shown his great love for us in those answers.
I used to doubt the goodness of God.
I did. I remember reading through The Purpose Driven Life by Rick Warren, and a quote jumped out at me. "God's ultimate goal for your life on earth is not comfort, but character development..." Which led me to the conclusion that everything in my life happens to teach me a lesson. I began to approach life with the view of God as detached teacher, and an authoritarian one, to boot. In my mind, I twisted the above quote even further to say, "God isn't interested in my happiness, he is interested in my character."
I do think that God uses the consequences of my actions to teach me a lesson, but I am not so sure about how he uses my circumstances ( although there is always something to learn!). I used to be afraid of what God would do in my life to get my attention fixed on Him, where it belongs. I literally feared God, and quite honestly felt suspicious of Him, always trying to second - guess His motives in every circumstance in my life.
When Noah was diagnosed last March, I thought, well, here it is - God is trying to get my attention. My personal devotion time had dropped off, I had kind of backed off my devotion to Him since starting my new job and not being involved in my Women's Bible Study, where I had been a leader. I thought that he was using my child to teach me a lesson -"Don't ignore me!"
He was teaching me a lesson, but I couldn't have been more wrong about what it was.
He has been teaching me all year about His great Love.
It has been shown the most clearly through His people. We have been blown away by the support we have received from people in our church and Christian School community, financial and otherwise, but really, the LOVE people have shown is by far the best part. I am so touched by people who come up to me and hug me with tears in their eyes, asking me about how we are doing; they honestly care. I actually can't go anywhere in Smithers without people stopping me to ask us how we're doing. Meals show up at our house every day. Cards and gifts from people we don't even KNOW, The day of Noah's diagnosis, Tom was here in Smithers, we were in Vancouver, and a parent from our school approached Tom and said, "We bought you a flight. Go." That is LOVE (it still makes me tear up to think of that moment). Grade 11 students from the class in which I used to work organized a benefit concert, where anyone who wanted to could come and share their gifts and raise money for us - that is love! (and a LOT of talent, as well!) Four girls from a family dear to us decided to cut their amazing, beautiful hair and donate it and raise money for flights for us while doing it - that is LOVE. The Sausage Factory, a local store, put a box with Noah's picture on it beside their till and people who shopped there kept filling it with coins for a whole year - that is LOVE. There are countless examples of God showing us His love through other people.
He also began to work in my heart. One example of how he began to reach me, happened when Noah had c.Difficile and we couldn't stay at RMH. We were booked in at Easter Seals for the weekend. Don't get me wrong, I appreciate Easter Seals, it is a good place to stay, but it is old and kind crumbling, it smells bad and most of the rooms are so old they just seem dirty. I had heard stories about bedbugs (and actually seen evidence of them there - no bugs, but they had been in that room -ugh...) so I was really reluctant to go there.
They do have 4 rooms that have been remodeled, of the 50 in the building. I started praying, kind of half heartedly, "Please let us get a new room (and no bedbugs)!" with out really expecting God to answer.
Well, what do you know, but we got a New room! The House was packed and the only room available was a remodeled one! The room was gorgeous, new laminate flooring, maple cabinets, granite countertops, undermounted sinks and a flat screen TV! It was nicer than my house! I remember being so excited and surprised, but then I thought, "well, I prayed for it... I shouldn't really be surprised, should I? Doesn't God love me that much that he would answer that kind of prayer??"
The answer: of course He does. He cares about my happiness. AND my character.
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