I really thought I would have an easier time writing, but I am having trouble. Partially because it feels like there isn't much to say, though I know that isn't true. Here's a brief rundown of the last 24 days:
On Mother's Day, we were treated to a lovely brunch here at the House, and in the evening, we went to a performance of Alaria's Fiddle, by the Valley Youth Fiddlers. It was fantastic, a little slice of home. It was so wonderful, seeing all those familiar faces, hugging my friends and seeing how the music gave them and we the audience so much joy. They gave us and anyone who wanted to come from RMH free tickets, for which we were very grateful. There was a lot of interest from other families, but unfortunately, the House pulled out the big guns and organized massages, and hair and nail services for all the moms there, so many elected to stay behind. One family came with us and they really enjoyed it. I also invited our Doctor, Dr. Davis, to the performance, he attended with his wife and they both loved it. Dr. Davis is also Wren Williston's doctor; she was performing along with her sister Chloe.
Our Pastor and friend, Ken VanderHorst came to visit the next day, just for a couple of days. He had wanted to hang out with us for three days: he thought we'd go out places, maybe even a Whitecaps game; he'd hang out with us at RMH, and play video games; and he also had some other people to visit with. I said, no, that is going to be too long, we can't plan anything, because we never know what is going to happen, and we are very boring. He didn't believe me.
The day before he arrived, Noah started feeling sick. He started getting a sniffly nose and a bit of a cough. Well, at RMH, that is very much frowned upon, In fact, they ask you to leave if you are sick. Which makes sense, because there are a lot of kids around with low blood counts, and they can get sick very easily, He sort of spiked a fever on Sunday night after the show, but we didn't go in to emerg, like he is supposed to; we decided that we'd see if he still had a fever in the morning, we would go in. It was pretty obvious that he was getting a cold, it wasn't an infection in his line. I am not a very good rule-follower...
Well, Monday morning rolls around, and he does not have a fever. He does, however, have a runny nose. So when Ken showed up, there were no video games, Noah was staying in our room. He also had very low counts, so we couldn't really go anywhere either, (the show was probably not a good idea). He was feeling very unwell, like he needed a transfusion. So we sat and chatted in our room for a bit, then headed off to Noah's clinic appointment, where he promptly spiked a fever, just before his platelet transfusion was to begin. His platelets were critically low, his hemoglobin not as bad, so they decided he should have platelets first. So there we were, hanging out in the clinic, in isolation, so there were no video games. Noah wasn't feeling well, and then he had some benedryl, because he reacts to platelets, so he slept for a while. SUPER BORING. Ken did get a window into our life here, and a bit of an education; he had a long chat with Dr, Davis.
Ken went and did some other visiting and then came back to watch the hockey game in Noah's room, because if an oncology kid gets a fever, they are admitted ASAP, and subjected to many swabs and blood cultures to see why they have a fever. Noah was diagnosed with Rhinovirus. A Cold. I felt much better about being admitted than I thought I would, mainly because it kept me honest. I didn't want to have to keep Noah a secret the whole time, and sneak around. I don't know if it was that night, or the next, when I said to Ken, \'See, we are very boring." He replied, "Yes, and when it's not boring, it's not good!" That is Truth. Right there. Boring is actually good. We love boring.
Noah stayed in the hospital all week, five days, due to his cold, and low counts. We had a few visitors: Lindsay, a former volunteer at RMH, my relative, Trevor, and then on Thursday night, Tom came with Miranda and Alyson for the long weekend, which was so great. The girls and I stayed at the house, and Tom stayed with Noah in the Hospital. The next day, Noah was discharged and we moved out of RMH and to South Surrey, to the lovely home of Dan and Irene Schat, who offered it to us while they were away. Noah seemed to get a lot better while we were gone as well. We had a very relaxing long weekend. we did some shopping at the outlet mall, we spent many hours at Crescent Beach, strolling along the beach and eating Calamari from an amazing seaside restaurant, called Hooked. Noah loved the calamari so much we went back three times, and then again when we returned the car Dan and Irene let us borrow just the other day. It really is delicious. We stayed there until Monday because Noah had an appointment to get his Erwinia injection at BCCH. That evening, we crammed all five of us into our small room at RMH. It was tight - and very hot - but we managed.
On Tuesday morning, when we woke up and Tom and the girls were getting ready to head home, Noah noticed that his right arm was much larger than his left, and very swollen, all the way up and into his chest as well. His VAD wasn't sticking up like usual, and the area was very red. So they left and we went to Emerg, By 11 or so, Noah had already had bloodwork, a chest x ray and an ultrasound, to figure out what was going on. That part of the day went very fast, or it would have, had I not forgotten my phone at RMH. It was very difficult to keep Tom in the loop, as a). I didn't have my phone, and they kept saying, "the docs are coming soon, it will just be a few minutes", so I thought I didn't have time to go get it. and b). The cell service in emerg is terrible. I kept having to take Noah's phone out to the main lobby area to send or receive any texts. We waited until 4pm to hear what was happening and what the plan was going to be.
Turns out, the Erwinia has caused a fairly large blood clot to form in three major veins in his shoulder/armpit area. They decided to put him on a blood thinner, Enoxaparin, which is administered by subcutaneous injection, similarly to insulin, using insulin needles. I was very nervous about doing this, but Noah, who really hates the Erwinia shots, said, "It probably won't be that bad." He immediately had a positive attitude. He is really amazing. Even more so, now that he has completely taken over the shots. He needs to do them 12 hours apart, so he has decided on 9 and 9. He wakes up 9 and gets it all ready himself and just does it. Noah decided that if his Opa and his friend Andrew who have diabetes can do this, so can he.
They can't be sure if it is from his VAD line or from the Erwinia, so for now, they have stopped the Erwinia, and they have decided that he will need to be on Enoxaparin for the duration of his treatment, which could be years.
The stopping of Erwinia makes me a little worried, because the goal of this month is to get him into remission, and now, for over a week before his biopsy, he will have had no chemo. Even writing that makes my heart pound a little. But it was so interesting, because as I was writing that on a comment on my Facebook post about this, a thought popped into my head. A reminder of the story of Gideon, a man who was charged with a huge task of defeating the massive Midianite army with just a small army. At one point, he has 20 000 men in his army, and God says to him, "You have too many men. Tell those ones to go home." And again later on in the story, God says, "You still have too many, tell those others to go home. I don't want you to think you did this on your own, I want you to know it was Me." Gideon went on to defeat that massive army with only 300 men,
I very strongly felt that God was telling me, you are still thinking in earthly terms. Stop relying on chemo. Rely on me. I have seen references to Gideon a few times since then, and it has brought me peace.
Until yesterday, when Noah's visit with Dr. Davis put this to the test. Dr. Davis has a colleague at Johns Hopkins University who specializes in L'asparaginase, (Erwinia). He said, "I called him to talk about Erwinia, but we ended up talking mostly about Noah's cytogenetics." Which is basically the genome of Noah's leukemia cells. Cytogenetics play a big role in determining what course of treatment to follow, because they have realized that having (or not having) certain chromosomes makes a difference in how a patient will respond to the treatment. We didn't know this, but Noah has challenging cytogenetics. It is all very confusing, and I will need another visit with Dr. Davis to understand, but the bottom line is this: it is very important that he achieves remission. Dr. Davis thinks it is very likely that he is in remission, due to the fact that his counts are very good. When his body was making leukemia cells, his ANC (neutrophil count) was basically 0. Yesterday it was 5, which is in the normal range. All the rest of his counts have also gone up, which is also a good indication. It's just that darn Erwinia. I would feel so much better if he was still getting chemo, or if there was a little window into his bone marrow so we could see what is going on in there. But then the Lord shows me something with a reference to Gideon and I feel better. Anyway, we would be so grateful if you would join us in praying for complete remission.
The biopsy is tomorrow morning, and I don't know when we will have results. It will depend on where the marrow is analyzed. If it is here, we will likely have the results the same day. If, because of the study, it will be analyzed elsewhere, I don't know when we will hear. Please just pray. I am essentially praying with every breath today.
After the biopsy and lumbar puncture and visit tomorrow, we get to go home for a while. We aren't sure how long, it could be 5 days, it could be 13 days, depending on what is next, which we won't know until we have the results of the biopsy.
Noah has felt ok, he is still coughing and blowing his nose a bit, so we are trying to hide in our room or be outside as much as possible. He has been eating all of his meals up here. I feel guilty, but our social worker told us that even if we had left RMH on the weekend, there was no where to go. Easter Seals was full, as well as the hotels that the BC Family Residence uses. I feel like its ok. He hasn't been in contact with anyone, and it's just one more night. 😷
We did have a lovely visit with Barb Mohan, Jasper's mom, who you might remember if you read my previous posts. We went out for lunch, then to a music store downtown, to a beach for a bit and then out for dinner before she had to head back to Duncan, It was so great to see her. I have missed her.
Anyway, it's time to go, and start packing to go home tomorrow. I am beyond excited. And a little nervous about how we are going to get all this stuff home!
I will try to update again tomorrow or if/when I hear results. Until then....hoping for more boring. we love boring.
Tuesday, May 30, 2017
Friday, May 12, 2017
Relapse.
I am so relieved right now. I remembered that I used my school email to log into this blog. I didn't want to lose all of it. PHEW!!
On the other hand, I am not happy about having to re-start this blog. I was kind of hoping to put it all behind us. But, unfortunately, it was not to be: Noah has relapsed.
I hope we can be forgiven for having a few questions. You see, after six years, you start to think you're in the clear. It was a wonderful time: he finished treatment in 2014; he excelled in school; enjoyed playing sports and pestering his sisters; he got a job at a local gas station and a girlfriend; and basically enjoyed life. Yes, Noah had been in remission for SIX years. Apparently, relapse this late never happens. According to Noah's doctor, he has only seen this five times in his 30+ year career. He was sure it was something else, something much less worrisome than leukemia, and he was completely shocked when the results of Noah's biopsy came back positive for ALL.
So, that happened on April 26, 2017. I'll give you a brief rundown of the situation:
On February 12, I remembered that Noah hadn't been in for his three-month bloodwork and check up in January, so I dropped him off at the hospital and I went to work. At 11:00, I got a phone call saying that the doctor wanted to see him asap because his counts were off. Apparently all of his counts tanked. He was Anemic (very low red blood cells), Thrombocytopenic (low platelets), and neutropenic (very low neutrophils, infection-fighting white cells). It was so strange, we hadn't seen numbers like this since 2012. Five years!!
They initially thought it was a virus, and he did get very sick that week, missing basketball zones and school the whole next week. After a week or so, he recovered from his illness, so I thought it must have been a virus as well. However, subsequent bloodwork showed that everything except his Neutrophil count had gone up. I was very worried about him going to school and work with counts so low, but we thought, he can't stay home forever. So he continued to go to school and work, even going along and playing some at basketball provincials. His ANC (neutrophil count) was consistently around zero the entire spring. Normal range is between 3-7. He just lived his life normally and, miracle of miracles, did not get sick after that initial illness.
By the end of March, the doctors at Children's had decided that something was up and ordered a bone marrow biopsy. That was the week Noah was scheduled to leave for Encounters With Canada, as well as a class trip to Quebec City. We knew how much Noah had been looking forward to this trip, so we asked Dr. Davis if he could do the biopsy upon his return. In hindsight, I am so glad we did, for two reasons:
1. It was an amazing trip. He had a fantastic time with his friends and learning about Vimy and going to a reception at Rideau Hall, etc. So. Fun.
2. The biopsy may not have shown anything a month earlier. His bone marrow was pretty full of blasts, but he had no circulating blasts in his bloodstream as of yet. We would have been puzzled.
So what now?
He is currently in the first phase of treatment, called induction. It looks very similar to the first time so far. He has had two days of a strong chemotherapy drug called Mitoxantrone, five days of Dexamethasone, two doses of Vincristine, and he will have had two rounds of Erwinia l'Aspariginase, which means 24 needles into his quad muscles, which he really hates. As of this writing he has had eight of them. He has had two lumbar punctures, with chemo into his spinal fluid, just in case there are leukemia cells in there. So far he is clear. He will have two more doses of Vincristine, and on Wednesday he will begin the next five days of Dex. He doesn't like it because it makes him "chubby" Hearing him say this makes everyone giggle. He is certainly not chubby. Far from it. The last day of this part is May 31st, when he will have Erwinia, a lumbar puncture, and a bone marrrow biopsy.
This is the important part. The biopsy is to see if he has gone into remission. We are praying that by the end of induction that he has, indeed, gone into remission, because if he hasn't we are looking at a bone marrow transplant, which we would like to avoid if at all possible. Please join us in praying for remission. This means fewer than 0.1% blast cells in the bone marrow. Unlike the first time, we are not getting weekly updates as to where his bone marrow is at. It's just the one.
Right now, we are at Ronald Mc Donald House, which is amazing. Noah is feeling fine, eating a lot, which at first I attributed to the Dex, but now it's just his regular, 16 yr old boy appetite. He remarked this afternoon that he is feeling perfectly fine. Just tired. He was very happy when his friends came from Smithers to visit! On one of the first days, his friend Andrew came to hang out for a bit, and my brother Scott came with his three boys too. Visitors are great. This is a photo of Noah's friend, Jordan and Noah's girlfriend, Emily. It was so awesome that they came, even if it was just for a few hours.
He has gone to school at the hospital a few times; he thought it would be a good idea to get lots of work done while he is feeling well. Smart boy! He spends a lot of time playing his guitar, and even had a FaceTime guitar lesson with his teacher back in Smithers.
We decided to put Noah in a study, which I will explain in further detail in a future post. I thought I had better get this one done; I was having trouble wrapping my head around starting it up again....
I don't want to be here. I don't want to be doing this again, but here we are. And once again, we can see the Lord's hand all around, and feel him lifting us up. Thank you for all of your support, for your love and care, for your meals, for your kind messages and texts, all of it, much appreciated. Thank you.
On the other hand, I am not happy about having to re-start this blog. I was kind of hoping to put it all behind us. But, unfortunately, it was not to be: Noah has relapsed.
I hope we can be forgiven for having a few questions. You see, after six years, you start to think you're in the clear. It was a wonderful time: he finished treatment in 2014; he excelled in school; enjoyed playing sports and pestering his sisters; he got a job at a local gas station and a girlfriend; and basically enjoyed life. Yes, Noah had been in remission for SIX years. Apparently, relapse this late never happens. According to Noah's doctor, he has only seen this five times in his 30+ year career. He was sure it was something else, something much less worrisome than leukemia, and he was completely shocked when the results of Noah's biopsy came back positive for ALL.
So, that happened on April 26, 2017. I'll give you a brief rundown of the situation:
On February 12, I remembered that Noah hadn't been in for his three-month bloodwork and check up in January, so I dropped him off at the hospital and I went to work. At 11:00, I got a phone call saying that the doctor wanted to see him asap because his counts were off. Apparently all of his counts tanked. He was Anemic (very low red blood cells), Thrombocytopenic (low platelets), and neutropenic (very low neutrophils, infection-fighting white cells). It was so strange, we hadn't seen numbers like this since 2012. Five years!!
They initially thought it was a virus, and he did get very sick that week, missing basketball zones and school the whole next week. After a week or so, he recovered from his illness, so I thought it must have been a virus as well. However, subsequent bloodwork showed that everything except his Neutrophil count had gone up. I was very worried about him going to school and work with counts so low, but we thought, he can't stay home forever. So he continued to go to school and work, even going along and playing some at basketball provincials. His ANC (neutrophil count) was consistently around zero the entire spring. Normal range is between 3-7. He just lived his life normally and, miracle of miracles, did not get sick after that initial illness.
By the end of March, the doctors at Children's had decided that something was up and ordered a bone marrow biopsy. That was the week Noah was scheduled to leave for Encounters With Canada, as well as a class trip to Quebec City. We knew how much Noah had been looking forward to this trip, so we asked Dr. Davis if he could do the biopsy upon his return. In hindsight, I am so glad we did, for two reasons:
1. It was an amazing trip. He had a fantastic time with his friends and learning about Vimy and going to a reception at Rideau Hall, etc. So. Fun.
2. The biopsy may not have shown anything a month earlier. His bone marrow was pretty full of blasts, but he had no circulating blasts in his bloodstream as of yet. We would have been puzzled.
So what now?
He is currently in the first phase of treatment, called induction. It looks very similar to the first time so far. He has had two days of a strong chemotherapy drug called Mitoxantrone, five days of Dexamethasone, two doses of Vincristine, and he will have had two rounds of Erwinia l'Aspariginase, which means 24 needles into his quad muscles, which he really hates. As of this writing he has had eight of them. He has had two lumbar punctures, with chemo into his spinal fluid, just in case there are leukemia cells in there. So far he is clear. He will have two more doses of Vincristine, and on Wednesday he will begin the next five days of Dex. He doesn't like it because it makes him "chubby" Hearing him say this makes everyone giggle. He is certainly not chubby. Far from it. The last day of this part is May 31st, when he will have Erwinia, a lumbar puncture, and a bone marrrow biopsy.
This is the important part. The biopsy is to see if he has gone into remission. We are praying that by the end of induction that he has, indeed, gone into remission, because if he hasn't we are looking at a bone marrow transplant, which we would like to avoid if at all possible. Please join us in praying for remission. This means fewer than 0.1% blast cells in the bone marrow. Unlike the first time, we are not getting weekly updates as to where his bone marrow is at. It's just the one.
Right now, we are at Ronald Mc Donald House, which is amazing. Noah is feeling fine, eating a lot, which at first I attributed to the Dex, but now it's just his regular, 16 yr old boy appetite. He remarked this afternoon that he is feeling perfectly fine. Just tired. He was very happy when his friends came from Smithers to visit! On one of the first days, his friend Andrew came to hang out for a bit, and my brother Scott came with his three boys too. Visitors are great. This is a photo of Noah's friend, Jordan and Noah's girlfriend, Emily. It was so awesome that they came, even if it was just for a few hours.
He has gone to school at the hospital a few times; he thought it would be a good idea to get lots of work done while he is feeling well. Smart boy! He spends a lot of time playing his guitar, and even had a FaceTime guitar lesson with his teacher back in Smithers.
So. Chubby.
We decided to put Noah in a study, which I will explain in further detail in a future post. I thought I had better get this one done; I was having trouble wrapping my head around starting it up again....
I don't want to be here. I don't want to be doing this again, but here we are. And once again, we can see the Lord's hand all around, and feel him lifting us up. Thank you for all of your support, for your love and care, for your meals, for your kind messages and texts, all of it, much appreciated. Thank you.
Saturday, March 30, 2013
Hi everyone! Happy Easter to you! May you experience the same Joy that we have, knowing that sickness and death have been defeated by Jesus death and resurrection. Hallelujah!
I just wanted to let you know what is going on with us...
We have been doing extraordinarily well since Christmas; Noah hasn't been in the hospital since the week before Christmas vacation. yahoo! Man, he really had a rough go of it in the fall. That made me really nervous for our upcoming wish trip; wondering if he was going to be well enough to go at all! Well, praise the Lord, he is doing great! We went to Vancouver for a treatment on Friday and his counts are good, even a little high, so we are going to deal with upping his chemo a bit when we get home. Home from where, you say...?
Let me tell you!
We are leaving in the morning to go on the trip of a lifetime: the Galapagos Islands! They are about 1000 km off the coast of Ecuador, and they are the place where Darwin came up with the idea for the Theory of Evolution. There are animals there that are totally unique to the islands- iguanas that swim, penguins, huge tortoises and blue-footed booby birds. We are beyond excited. We would like to thank the Children's Wish Foundation for this; they have organized an amazing trip for us - stay tuned, we will be back in 10 days and I will have a LOT of photos to show you!
I just wanted to let you know what is going on with us...
We have been doing extraordinarily well since Christmas; Noah hasn't been in the hospital since the week before Christmas vacation. yahoo! Man, he really had a rough go of it in the fall. That made me really nervous for our upcoming wish trip; wondering if he was going to be well enough to go at all! Well, praise the Lord, he is doing great! We went to Vancouver for a treatment on Friday and his counts are good, even a little high, so we are going to deal with upping his chemo a bit when we get home. Home from where, you say...?
Let me tell you!
We are leaving in the morning to go on the trip of a lifetime: the Galapagos Islands! They are about 1000 km off the coast of Ecuador, and they are the place where Darwin came up with the idea for the Theory of Evolution. There are animals there that are totally unique to the islands- iguanas that swim, penguins, huge tortoises and blue-footed booby birds. We are beyond excited. We would like to thank the Children's Wish Foundation for this; they have organized an amazing trip for us - stay tuned, we will be back in 10 days and I will have a LOT of photos to show you!
Monday, November 5, 2012
I am very ashamed...
about how long it has been since I updated this blog!!!! I am so sorry.
Last time I said, "No news is good news. " Well this time that isn't entirely true. Nothing catastrophic has happened, but poor Noah has been through the ringer this fall!
It all started at the Fall Fair. Smithers has an Exhibition every fall where there is a carnival, a rodeo, concerts, competitions in every category you can think of from photography to creations made of vegetables, and so much other stuff it is a crazy fun time. This year we decided to go on the Saturday night because that was when Noah's absolute favourite band, The Arrogant Worms, were playing. We arrived a little early so the kids could go on some rides. Not five minutes after arriving, Noah sidles up to me and says, "Mom, I have a rash...."
I knew as soon as I saw it - Shingles. Aww, man..... I knew Shingles is a big deal with "Leukemiacs" (Tom's pet name) so I called the hospital. The Oncologist on call (not our doctor, because everything that happens to Noah happens on the weekend or at night, so we always get someone else) said that he would likely have to be admitted so we should go to the hospital. I asked her if we had to go right now, and she just said, "I am not sure how to answer that question." So I decided that we would go, but after the concert. I felt kind of bad, but we had only just arrived and he really wanted to see the band. We were very careful to stay away from any little kids or pregnant women, and so the kids went on some rides and then we left after the concert, which was very enjoyable; the Worms are very funny. : 0 )
He was admitted, which was super awesome and very convenient, because it was the teacher work week, and both Tom and I were supposed to be at meetings every day that week. Instead, I was sleeping at the hospital, Tom was going to the meetings and the girls were staying home all day by themselves, watching TV all day. (When we got internet, we also got a satellite dish, so we actually have clear channels to watch, which we have never had before. The kids are over the moon about it) Tom would come to the hospital after school, I would go home and hang out with the girls, and make supper, then go back to the hospital and Tom would go home. UGH. It was the first time I questioned moving so far out of town.
Noah was on a strong dose of IV Acyclovir, (an anti-viral) every four hours, and apparently it can be hard on his kidneys so he had to be on fluids as well. Thankfully his oncologist decided that since he was doing ok, he could go home on the Wednesday afternoon. What a relief! We just had to finish the anti-virals at home. Much better. That was not what we wanted to be doing our final week of summer before school started!
We think that while he was at the hospital, he picked up c. Difficile again, because he has had it twice since then. He has also had a stomach bug, a REALLY bad cold that took him weeks to get over and some other mystery bug that landed him in the hospital for five days at the end of October.!!! He has been at emerg SIX TIMES since August 25. Actually more than that, because at one visit it was decided that he needed doses of IV antibiotics over three days so we needed to come in every night for a dose. That was a real pain, because we had to go into Emerg after 8pm, because they had to be 24 hrs apart. We would be all cozy at home and everyone doing homework or watching tv and we had to go into town to the hospital. I guess it was only for three days, but it sure felt like a lot more!!!
This last time he was admitted, he had c. Diff, so he was home from school with me, and I just randomly took his temperature, only to find it was 39.4! I was so shocked- he did not look like he had a fever! When we arrived at Emerg, it was up to 39.9. it was crazy. They did a whole bunch of tests, but nothing ever grew in any of the cultures, so they think it must have been a virus.
He spent five days in the Palliative Care room here at the hospital. It was a bit weird to be in there, but in actuality, it was really awesome; it is the biggest and nicest room in our hospital. It has two leather couches, a fridge and a microwave, an actual table and chairs to eat at and for Noah to do his homework at when he felt better, and a big flat screen TV with cable! It was great. I mean, if you have to be in the hospital, you may as well be comfortable, right? Especially if you're in isolation. He had really low counts and c. Diff, so everyone who came in had to be masked, and if they were to have contact with other patients, gloved and gowned too, both to protect Noah from the other patients and to protect them from him!
We were a little worried because he wasn't feeling too well last night, so we thought he might be getting c. diff again from the anti-biotics he was on, but he is much better today, so we are very relieved and hopeful that he won't get it again.
His Neutrophil count has been very low since he was released from the hospital, so we have been a bit nervous about him being at school, but it would be no better at home, because I think the only person who is sick at school is actually Emily! He would have more exposure to her germs here than at school, lol! I did go around to each of the classes in the high school and introduce them to the bottle of hand sanitizer I hope they become intimately acquainted with.... and I put up some really cute handwashing posters like this one:
hopefully they help to inspire some more kids to be more careful.
Noah and I went to Vancouver for his regular treatment on Friday and I asked the Doctor about another MRI and he said that they don't normally re-scan the kids, but he will re-scan Noah's legs simply because he is curious about how much and how quickly his bones have healed. He wants to wait until January or so to give them a good amount of time to heal up. I am very curious too. Noah is still not permitted to do any high impact activity, except a gentle jog, with strict instructions to stop immediately if he has any pain. He has been feeling just fine, so I am assuming things are progressing nicely. However, I have no idea what impact the chemo has on bone cells. I could be completely wrong. I guess we'll have to wait.
Don't worry - here have been good things happening too! School started, and all of the kids, especially Noah, were excited to head back.
All of our kids are taking piano lessons, and all of them are playing hockey this season. Emily and Noah are also playing on the school volleyball teams, so we are quite busy. The hockey teams they play on only have about an hour or hour and a half of ice time per week, so it is a manageable amount of time, but we have been away a lot on the weekends for volleyball playdays, which doesn't make Tom very happy.
He has been enjoying the lake this fall, catching a lot of rainbow trout on the fly. He is very funny: whenever we are in town or at school or doing something not at home, he complains about how much work he has to do (putting a new roof on the woodshed, cleaning the chimney, etc) but then as soon as he takes one look at that lake, he says, rather sheepishly, "or maybe I'll just go fishing..." It is quite hilarious, and I don't begrudge him that one bit. Sure, I have to scrape the windows in the morning because of all the wood in the carport that he has to split and put in the woodshed, but not until it has a new roof.... but oh well... He won't be able to fly fish for much longer.
We were also quite busy with the Cops for Cancer Tour de North. It is a cycling trip from Prince George to Prince Rupert that some RCMP officers from each town along the way participate in to raise money for Camp Goodtimes and other cancer supports from the Canadian Cancer Society. Noah was the Jr. Team member, so he was in the newspaper, on the radio in Prince George, and part of the arrival event in Smithers. It was pretty cool.
We have had a number of visitors to our yard and lake this fall, (starting with my gorgeous sister, Jenn and her two boys) then this absolutely huge black bear, which Tom estimated at about 300 lbs. When he stood on his hind legs to get the apples higher up, he was taller than me!
He was so cute... Miranda named him Kyle. : )
We have had tundra swans stop by on their way south, and just today, on our way home after school we saw this fella:
This one totally made Tom's week. He LOVES owls.
There have been other animals and birds, these are just the highlights... it has been really fun to get out the bird book that Tom's mom gave us years ago and to figure out that the kind of ducks that are on the lake right now are called Coots and there are Harriers and eagles, and so many more. It is so great to live here. We are blessed in so many ways. And yet...
Please continue to keep Noah in your prayers, we are now realizing how important it is to keep him healthy, and how difficult it is!
There are others who need your prayer as well. Jordan, our friend from RMH desperately covets your prayers, and Justin, another boy from RMH who had a brain tumour recently relapsed with tumours in his spine. These two boys have both been told there is nothing more that can be done, but we know that Jesus is bigger than cancer, and nothing is too difficult for him!
Erin, Noah's good friend since he was born, was recently diagnosed with a serious heart condition, which could require her having a defibrillator implanted. They find out on Wednesday. Please pray for wisdom and of course for healing for her.
Kaitlyn is in the Eating Disorder clinic at BC Children's hospital. She is having a difficult time too. Please pray for the walls she has built up to be torn down. Please hold her family up as well.
There are so many hurting people... such a broken world... Come Lord Jesus.
Last time I said, "No news is good news. " Well this time that isn't entirely true. Nothing catastrophic has happened, but poor Noah has been through the ringer this fall!
It all started at the Fall Fair. Smithers has an Exhibition every fall where there is a carnival, a rodeo, concerts, competitions in every category you can think of from photography to creations made of vegetables, and so much other stuff it is a crazy fun time. This year we decided to go on the Saturday night because that was when Noah's absolute favourite band, The Arrogant Worms, were playing. We arrived a little early so the kids could go on some rides. Not five minutes after arriving, Noah sidles up to me and says, "Mom, I have a rash...."
He was admitted, which was super awesome and very convenient, because it was the teacher work week, and both Tom and I were supposed to be at meetings every day that week. Instead, I was sleeping at the hospital, Tom was going to the meetings and the girls were staying home all day by themselves, watching TV all day. (When we got internet, we also got a satellite dish, so we actually have clear channels to watch, which we have never had before. The kids are over the moon about it) Tom would come to the hospital after school, I would go home and hang out with the girls, and make supper, then go back to the hospital and Tom would go home. UGH. It was the first time I questioned moving so far out of town.
Noah was on a strong dose of IV Acyclovir, (an anti-viral) every four hours, and apparently it can be hard on his kidneys so he had to be on fluids as well. Thankfully his oncologist decided that since he was doing ok, he could go home on the Wednesday afternoon. What a relief! We just had to finish the anti-virals at home. Much better. That was not what we wanted to be doing our final week of summer before school started!
We think that while he was at the hospital, he picked up c. Difficile again, because he has had it twice since then. He has also had a stomach bug, a REALLY bad cold that took him weeks to get over and some other mystery bug that landed him in the hospital for five days at the end of October.!!! He has been at emerg SIX TIMES since August 25. Actually more than that, because at one visit it was decided that he needed doses of IV antibiotics over three days so we needed to come in every night for a dose. That was a real pain, because we had to go into Emerg after 8pm, because they had to be 24 hrs apart. We would be all cozy at home and everyone doing homework or watching tv and we had to go into town to the hospital. I guess it was only for three days, but it sure felt like a lot more!!!
This last time he was admitted, he had c. Diff, so he was home from school with me, and I just randomly took his temperature, only to find it was 39.4! I was so shocked- he did not look like he had a fever! When we arrived at Emerg, it was up to 39.9. it was crazy. They did a whole bunch of tests, but nothing ever grew in any of the cultures, so they think it must have been a virus.
He spent five days in the Palliative Care room here at the hospital. It was a bit weird to be in there, but in actuality, it was really awesome; it is the biggest and nicest room in our hospital. It has two leather couches, a fridge and a microwave, an actual table and chairs to eat at and for Noah to do his homework at when he felt better, and a big flat screen TV with cable! It was great. I mean, if you have to be in the hospital, you may as well be comfortable, right? Especially if you're in isolation. He had really low counts and c. Diff, so everyone who came in had to be masked, and if they were to have contact with other patients, gloved and gowned too, both to protect Noah from the other patients and to protect them from him!
We were a little worried because he wasn't feeling too well last night, so we thought he might be getting c. diff again from the anti-biotics he was on, but he is much better today, so we are very relieved and hopeful that he won't get it again.
His Neutrophil count has been very low since he was released from the hospital, so we have been a bit nervous about him being at school, but it would be no better at home, because I think the only person who is sick at school is actually Emily! He would have more exposure to her germs here than at school, lol! I did go around to each of the classes in the high school and introduce them to the bottle of hand sanitizer I hope they become intimately acquainted with.... and I put up some really cute handwashing posters like this one:
Noah and I went to Vancouver for his regular treatment on Friday and I asked the Doctor about another MRI and he said that they don't normally re-scan the kids, but he will re-scan Noah's legs simply because he is curious about how much and how quickly his bones have healed. He wants to wait until January or so to give them a good amount of time to heal up. I am very curious too. Noah is still not permitted to do any high impact activity, except a gentle jog, with strict instructions to stop immediately if he has any pain. He has been feeling just fine, so I am assuming things are progressing nicely. However, I have no idea what impact the chemo has on bone cells. I could be completely wrong. I guess we'll have to wait.
Don't worry - here have been good things happening too! School started, and all of the kids, especially Noah, were excited to head back.
All of our kids are taking piano lessons, and all of them are playing hockey this season. Emily and Noah are also playing on the school volleyball teams, so we are quite busy. The hockey teams they play on only have about an hour or hour and a half of ice time per week, so it is a manageable amount of time, but we have been away a lot on the weekends for volleyball playdays, which doesn't make Tom very happy.
He has been enjoying the lake this fall, catching a lot of rainbow trout on the fly. He is very funny: whenever we are in town or at school or doing something not at home, he complains about how much work he has to do (putting a new roof on the woodshed, cleaning the chimney, etc) but then as soon as he takes one look at that lake, he says, rather sheepishly, "or maybe I'll just go fishing..." It is quite hilarious, and I don't begrudge him that one bit. Sure, I have to scrape the windows in the morning because of all the wood in the carport that he has to split and put in the woodshed, but not until it has a new roof.... but oh well... He won't be able to fly fish for much longer.
We were also quite busy with the Cops for Cancer Tour de North. It is a cycling trip from Prince George to Prince Rupert that some RCMP officers from each town along the way participate in to raise money for Camp Goodtimes and other cancer supports from the Canadian Cancer Society. Noah was the Jr. Team member, so he was in the newspaper, on the radio in Prince George, and part of the arrival event in Smithers. It was pretty cool.
This is Henk Timmerman, the cyclist from Smithers, who invited Noah to be part of the team. They raised over $275000!! We had an event at our school that raised over $600 in 20 minutes: we sold pieces of duct tape in various lengths that the kids could use to tape the principal to the wall of the gym. It was pretty awesome and the cyclists were very impressed with our school's spirit.
We have had a number of visitors to our yard and lake this fall, (starting with my gorgeous sister, Jenn and her two boys) then this absolutely huge black bear, which Tom estimated at about 300 lbs. When he stood on his hind legs to get the apples higher up, he was taller than me!
There have been other animals and birds, these are just the highlights... it has been really fun to get out the bird book that Tom's mom gave us years ago and to figure out that the kind of ducks that are on the lake right now are called Coots and there are Harriers and eagles, and so many more. It is so great to live here. We are blessed in so many ways. And yet...
Please continue to keep Noah in your prayers, we are now realizing how important it is to keep him healthy, and how difficult it is!
There are others who need your prayer as well. Jordan, our friend from RMH desperately covets your prayers, and Justin, another boy from RMH who had a brain tumour recently relapsed with tumours in his spine. These two boys have both been told there is nothing more that can be done, but we know that Jesus is bigger than cancer, and nothing is too difficult for him!
Erin, Noah's good friend since he was born, was recently diagnosed with a serious heart condition, which could require her having a defibrillator implanted. They find out on Wednesday. Please pray for wisdom and of course for healing for her.
Kaitlyn is in the Eating Disorder clinic at BC Children's hospital. She is having a difficult time too. Please pray for the walls she has built up to be torn down. Please hold her family up as well.
There are so many hurting people... such a broken world... Come Lord Jesus.
Friday, August 17, 2012
August 2012
Hi Everyone! We finally got internet yesterday!! I have been wanting to update y'all on what has been going on, but with no internet, it is kind of difficult....
We moved to a little slice of heaven here on earth. We have been absolutely loving living on the lake; it has been so good for all of us to have this peaceful sanctuary as our home. We still can't believe we live here!
Noah and I went to Vancouver in July for treatments and also for an MRI of his knees, because we were concerned about the pain he was having while playing soccer. At our appointment, he was laying inside the machine, wearing the coolest goggles ever ( they played a movie that he could watch while in the MRI! ) while I sat outside of the red line lest my earrings etc, come flying out of my ears toward the massive magnet in the machine. I saw the tech sitting behind her computer click, click, clicking away at the pictures, then something else caught my attention and I looked away. Suddenly out of the corner of my eye, I could see a lot of activity in the little room- there were now three people in there, one person on the computer, one on the phone, one at another computer calling up some x rays that I could see were legs. Then she got a sheaf of papers and two of them looked at the papers and then at the xray then at the MRI screen and they were pointing at the screen and then at the xray, etc. They were looking worried and scurrying around in the room. I started to get a little worried, and then the first tech came out and said that the doctor had ordered x rays. Now I was really worried.
Noah asked, "Didn't I already have xrays?"
She looked startled. "You did? When?"
I said, "In May."
She leaned in. "Did they do both legs, or just one? Did they do the right leg? Did they do the whole leg or did they do Femur, Knee, Tibia and Fibula?"
Now I am starting to freak out. I casually say to Noah, "Hmmm.... I wonder what's going on?" He just shrugs, and goes to get dressed.
In the Xray dept, it just gets worse. They do front, back and side of his hip joint, his femur, his knee, tibia, fibula and ankle of both legs. It takes forever, and the whole time the two x ray techs are whispering and pointing and comparing, etc.
Now I am in full freak out. My heart is pounding, my legs are shaking - what could everyone be so worried about? Of course they are all "just" techs; they can't tell me anything, only a Dr. can tell me anything.... I just sat there and prayed and prayed until I felt calm(er).
I poked my head out of my little cubicle and asked, "Ummm, am I going to get to talk to someone about this? 'Cause I don't want to go home feeling the way I'm feeling right now." Then, to make matters worse, she comes over and puts her hand on my shoulder. " I can totally understand that. I'll see if I can find a Doctor." She was being so intentionally kind and sympathetic, that pushed me right off the edge.
The problem is, it is 5:45 on Friday afternoon. Everyone has gone home. Thankfully there was one Radiologist who was still in a procedure, so when he was finished, he would look at the X rays, and talk to me about them.
We had to wait until almost 7, but he did come and bring us back to the dark room where they look at the x rays on screens. It was a really cool place. He had been looking at Noah's x rays already, and he showed Noah all of his bones and joints, and in reply to my questions, said, "Well, nothing jumps out at me right now, but I will take a closer look at his previous x ray and compare them. If I find anything, I will let the oncologist on call know, and he or she will relay the message." That totally made me feel better.
We didn't hear anything that weekend and actually, not until the next Thursday, when our nurse called to say that they had noticed "bony changes" She hadn't seen any pictures or anything and our doctor was away, but when we came back in August, we would get to talk to someone about it.
I was confused because the radiologist said he would check the x rays, and he didn`t see anything. But that is because it doesn't really show up on x rays. This is what his MRI looks like.
We now know why the MRI techs were so worried. The big spot on the right tibia is avascular necrosis, or dead bone. The other tibia is not as bad, but the femurs are both just as bad as the tibia in the photo. (I only took a picture of this one; our doc said he would email the rest to us, so I stopped taking photos, but I don`t have them yet, so I only have this one)
The good thing is that it is all in his bones, and not in his joints. If it was in his knee joints, we would be looking at bone graft surgery or possible knee replacements, so we are very thankful it is in his bones, because in bones, it acts more like a broken bone that can regenerate.
The bad thing is that as you can see in the picture, the damage is extremely close to the growth plate (the arrow is pointing to the black line that is the growth plate). If the growth plate is damaged, his right leg may not grow as quickly or as long as the left leg. If that happens, they can fix it, but it is quite invasive and involves a leg-stretching brace that is screwed into his femur and tibia, so we would like to avoid that, if we can.
It will take a while for the bone to fully regenerate, so for the next few months he has to take it easy, and not do any high impact stuff. He will be lucky - he can play volleyball as long as he doesn`t jump too much, but he isn`t allowed to run lines. Hopefully by the time basketball season starts he will be able to play. Our Doctor wasn`t really keen on it, but we`ll see. Thankfully the things he can do and that are really good for him to do, like swimming, he can do daily, now that we live on the lake. Skating is also good, so he will be able to play hockey and skate on the lake when it freezes this winter.
He no longer has pain when he runs a bit, and the doctors have stopped the Prednisone, the drug that causes Avascular necrosis, so it shouldn`t get any worse. I don`t know what the long term implications of stopping the Prednisone are, but maybe after the MRI in the fall shows a fully healed bone, they will re start it.
Apparently they are realizing that Avascular necrosis is a wide-spread problem in kids with ALL, and the Child Oncology Group is trying to come up with a policy and a strategy to deal with it. Dr Lucy said that if they did MRIs on all the kids, a lot of them would have it.
So we are asking you to please join us in prayer and our prayer request is that his bones would heal up quickly and that there would be no damage to the growth plate on his tibia. Thanks so much for reading and for your support - we really appreciate it!
We moved to a little slice of heaven here on earth. We have been absolutely loving living on the lake; it has been so good for all of us to have this peaceful sanctuary as our home. We still can't believe we live here!
Noah and I went to Vancouver in July for treatments and also for an MRI of his knees, because we were concerned about the pain he was having while playing soccer. At our appointment, he was laying inside the machine, wearing the coolest goggles ever ( they played a movie that he could watch while in the MRI! ) while I sat outside of the red line lest my earrings etc, come flying out of my ears toward the massive magnet in the machine. I saw the tech sitting behind her computer click, click, clicking away at the pictures, then something else caught my attention and I looked away. Suddenly out of the corner of my eye, I could see a lot of activity in the little room- there were now three people in there, one person on the computer, one on the phone, one at another computer calling up some x rays that I could see were legs. Then she got a sheaf of papers and two of them looked at the papers and then at the xray then at the MRI screen and they were pointing at the screen and then at the xray, etc. They were looking worried and scurrying around in the room. I started to get a little worried, and then the first tech came out and said that the doctor had ordered x rays. Now I was really worried.
Noah asked, "Didn't I already have xrays?"
She looked startled. "You did? When?"
I said, "In May."
She leaned in. "Did they do both legs, or just one? Did they do the right leg? Did they do the whole leg or did they do Femur, Knee, Tibia and Fibula?"
Now I am starting to freak out. I casually say to Noah, "Hmmm.... I wonder what's going on?" He just shrugs, and goes to get dressed.
In the Xray dept, it just gets worse. They do front, back and side of his hip joint, his femur, his knee, tibia, fibula and ankle of both legs. It takes forever, and the whole time the two x ray techs are whispering and pointing and comparing, etc.
Now I am in full freak out. My heart is pounding, my legs are shaking - what could everyone be so worried about? Of course they are all "just" techs; they can't tell me anything, only a Dr. can tell me anything.... I just sat there and prayed and prayed until I felt calm(er).
I poked my head out of my little cubicle and asked, "Ummm, am I going to get to talk to someone about this? 'Cause I don't want to go home feeling the way I'm feeling right now." Then, to make matters worse, she comes over and puts her hand on my shoulder. " I can totally understand that. I'll see if I can find a Doctor." She was being so intentionally kind and sympathetic, that pushed me right off the edge.
The problem is, it is 5:45 on Friday afternoon. Everyone has gone home. Thankfully there was one Radiologist who was still in a procedure, so when he was finished, he would look at the X rays, and talk to me about them.
We had to wait until almost 7, but he did come and bring us back to the dark room where they look at the x rays on screens. It was a really cool place. He had been looking at Noah's x rays already, and he showed Noah all of his bones and joints, and in reply to my questions, said, "Well, nothing jumps out at me right now, but I will take a closer look at his previous x ray and compare them. If I find anything, I will let the oncologist on call know, and he or she will relay the message." That totally made me feel better.
We didn't hear anything that weekend and actually, not until the next Thursday, when our nurse called to say that they had noticed "bony changes" She hadn't seen any pictures or anything and our doctor was away, but when we came back in August, we would get to talk to someone about it.
I was confused because the radiologist said he would check the x rays, and he didn`t see anything. But that is because it doesn't really show up on x rays. This is what his MRI looks like.
We now know why the MRI techs were so worried. The big spot on the right tibia is avascular necrosis, or dead bone. The other tibia is not as bad, but the femurs are both just as bad as the tibia in the photo. (I only took a picture of this one; our doc said he would email the rest to us, so I stopped taking photos, but I don`t have them yet, so I only have this one)
The good thing is that it is all in his bones, and not in his joints. If it was in his knee joints, we would be looking at bone graft surgery or possible knee replacements, so we are very thankful it is in his bones, because in bones, it acts more like a broken bone that can regenerate.
The bad thing is that as you can see in the picture, the damage is extremely close to the growth plate (the arrow is pointing to the black line that is the growth plate). If the growth plate is damaged, his right leg may not grow as quickly or as long as the left leg. If that happens, they can fix it, but it is quite invasive and involves a leg-stretching brace that is screwed into his femur and tibia, so we would like to avoid that, if we can.
It will take a while for the bone to fully regenerate, so for the next few months he has to take it easy, and not do any high impact stuff. He will be lucky - he can play volleyball as long as he doesn`t jump too much, but he isn`t allowed to run lines. Hopefully by the time basketball season starts he will be able to play. Our Doctor wasn`t really keen on it, but we`ll see. Thankfully the things he can do and that are really good for him to do, like swimming, he can do daily, now that we live on the lake. Skating is also good, so he will be able to play hockey and skate on the lake when it freezes this winter.
He no longer has pain when he runs a bit, and the doctors have stopped the Prednisone, the drug that causes Avascular necrosis, so it shouldn`t get any worse. I don`t know what the long term implications of stopping the Prednisone are, but maybe after the MRI in the fall shows a fully healed bone, they will re start it.
Apparently they are realizing that Avascular necrosis is a wide-spread problem in kids with ALL, and the Child Oncology Group is trying to come up with a policy and a strategy to deal with it. Dr Lucy said that if they did MRIs on all the kids, a lot of them would have it.
So we are asking you to please join us in prayer and our prayer request is that his bones would heal up quickly and that there would be no damage to the growth plate on his tibia. Thanks so much for reading and for your support - we really appreciate it!
Friday, July 6, 2012
Again, it has been a long time, which is, by my estimation, a good thing, right? Kind of along the lines of "No news is good news"...
And it has been mostly good. It is July 6, and we are moving today. One of the things we have been very busy with is buying a house! We have bought a house on a small lake about 20 east of Smithers, so our new address is now in Telkwa. Weird. I never in a million years thought I would live in Telkwa. A huge reason that we have decided to move is because of Noah. He has become interested in Bowshooting and other outdoor pursuits and this place has a bit of property and a perfect place to set up targets, etc. And it has a lake. We received some money recently which we used to buy a couple of kayaks, which the kids, particularly Emily and Noah are excited about. We have always wanted to move out of town and when this came up, we decided that life is too short, and if an opportunity like this comes up, we can't turn it down. It has a lake. It will be VERY different - no high speed internet, which will be a huge adjustment for all of us; we don't have cable and out kids have been watching all of their tv online and actually so has Tom, with all of his sports. we are hoping the TV antenna works so that we can watch the Olympics. Oh, and a 20 minute drive in to town, which is a big deal here. People are always saying, "You're moving all the way out there???" I have to remind them and myself that if we were in a city, we would think nothing of driving 20 minutes to work every day. In fact, in places like Vancouver, if you only have to drive 20 minutes to work, you have a pretty sweet deal going on! But, it will be totally worth it. Did I mention it has a lake? With a dock and a slide?
As far as Noah is concerned, everything is really going well. He had his first treatment here at our hospital and it went well, so that is a huge relief. The Clinic here is a very calm, realaxing space; they have worked hard to decorate it so that there is a calming atmosphere, which, quite honestly took my by surprise, because isn't this a hospital???
The only thing they need to work on is communication between the admitting guy and the emerg triage nurse. We did have an incident when Noah had a fever, and the guy didn't pass on the info that Noah has Leukemia, so when the nurse came out, to see who was next, she took everyone else first, including the guy who needed 2 stitches in his foot. : S She was kind of looking at me like, "oh, THAT mom, the one who brings her kid in to emerg because they have a fever. *roll eyes* hover mother..." The cool thing that happened was that when we got there, I posted it on facebook and immediately people started posting that they were praying for the fever to go down, and it did! we sat there for a while, and by the time an hour and a half was up, he was down to 37.4! It was so cool. When we decided to go home again without being seen, I told the nurse that his fever was down so we were leaving. She asked me if he had any other symptoms, and I told her, no, but he has Leukemia. Her eyes got big and she turned kind of white. Apparently, there is a protocol in place that says that if Noah shows up at emerg with a fever, he is supposed to be seen within 15 minutes. That only works if the guy at the front desk actually tells them he has Leukemia. Grrr.
I have learned two lessons here:
1. Prayer is powerful and God heals.
2. I need to be more assertive and advocate more forcefully because people don't know.
\
Noah even played soccer. His knees were sore and his ankles are stiff from chemo and from sitting around for a year, so his first practice and games were painful for him. And painful for us to watch, actually - he runs like a little old man, lol! He was very tired at the beginning, but as the season went on, his ankles loosened up, endurance improved, and so did his skill. He even scored a goal in the very last game.
Noah has been doing so well, in fact that we sent him to Edmonton for a week with my parents! Alone. Without me. It was very weird. I sent him with very detailed instructions for all of his chemo meds and all of the doses pre-measured, and very detailed instructions for what to do if he got a fever, etc. I will say that as they were leaving, it seemed he and I both had the same thought - he looked at me with an expression that said, is this a good idea? I was thinking the same thing, lol!
It all ended up being fine. He had a blast, visiting with all of his cousins there, he had his 12th birthday there, and was pretty well spoiled by everyone. He is completely exhausted and getting sick, I think (he started sneezing on the way home yesterday), but I am pretty sure he would say it was totally worth it. Hopefully he can fight it off soon; we are supposed to go to Vancouver and stay at RMH next week Friday!
He will have an MRI on Friday to see if the knee pain he was having while running is related to chemo, and hopefully we will see Jasper. It is possible that we won't be able to see him, or only if he isn't sick at all, because Jasper has had a stem cell transplant, and is in strict isolation.
I do have some sad news to report, last week little Lucas went into the hospital in Vernon, and on Wednesday, he passed away. Thank you for your thoughts and prayers. Please continue to pray for his parents, Christian and Nilva, for comfort and peace.
Other than that, we have just been living life. Emily's leg is healing quite nicely, she is on week 4 of the airboot after 6 weeks in a thigh -high cast. All of our kids did well in school -especially Emily, with straight As, so we are pretty proud of her. She won a number of academic awards, so that was pretty cool.
I should get back to packing.... ugh. We are supposed to be out of here by noon and if that happens it will be a miracle. Next post will be showing all y`all the pics of our new place!
Take care,
And it has been mostly good. It is July 6, and we are moving today. One of the things we have been very busy with is buying a house! We have bought a house on a small lake about 20 east of Smithers, so our new address is now in Telkwa. Weird. I never in a million years thought I would live in Telkwa. A huge reason that we have decided to move is because of Noah. He has become interested in Bowshooting and other outdoor pursuits and this place has a bit of property and a perfect place to set up targets, etc. And it has a lake. We received some money recently which we used to buy a couple of kayaks, which the kids, particularly Emily and Noah are excited about. We have always wanted to move out of town and when this came up, we decided that life is too short, and if an opportunity like this comes up, we can't turn it down. It has a lake. It will be VERY different - no high speed internet, which will be a huge adjustment for all of us; we don't have cable and out kids have been watching all of their tv online and actually so has Tom, with all of his sports. we are hoping the TV antenna works so that we can watch the Olympics. Oh, and a 20 minute drive in to town, which is a big deal here. People are always saying, "You're moving all the way out there???" I have to remind them and myself that if we were in a city, we would think nothing of driving 20 minutes to work every day. In fact, in places like Vancouver, if you only have to drive 20 minutes to work, you have a pretty sweet deal going on! But, it will be totally worth it. Did I mention it has a lake? With a dock and a slide?
As far as Noah is concerned, everything is really going well. He had his first treatment here at our hospital and it went well, so that is a huge relief. The Clinic here is a very calm, realaxing space; they have worked hard to decorate it so that there is a calming atmosphere, which, quite honestly took my by surprise, because isn't this a hospital???
The only thing they need to work on is communication between the admitting guy and the emerg triage nurse. We did have an incident when Noah had a fever, and the guy didn't pass on the info that Noah has Leukemia, so when the nurse came out, to see who was next, she took everyone else first, including the guy who needed 2 stitches in his foot. : S She was kind of looking at me like, "oh, THAT mom, the one who brings her kid in to emerg because they have a fever. *roll eyes* hover mother..." The cool thing that happened was that when we got there, I posted it on facebook and immediately people started posting that they were praying for the fever to go down, and it did! we sat there for a while, and by the time an hour and a half was up, he was down to 37.4! It was so cool. When we decided to go home again without being seen, I told the nurse that his fever was down so we were leaving. She asked me if he had any other symptoms, and I told her, no, but he has Leukemia. Her eyes got big and she turned kind of white. Apparently, there is a protocol in place that says that if Noah shows up at emerg with a fever, he is supposed to be seen within 15 minutes. That only works if the guy at the front desk actually tells them he has Leukemia. Grrr.
I have learned two lessons here:
1. Prayer is powerful and God heals.
2. I need to be more assertive and advocate more forcefully because people don't know.
\
Noah even played soccer. His knees were sore and his ankles are stiff from chemo and from sitting around for a year, so his first practice and games were painful for him. And painful for us to watch, actually - he runs like a little old man, lol! He was very tired at the beginning, but as the season went on, his ankles loosened up, endurance improved, and so did his skill. He even scored a goal in the very last game.
Noah has been doing so well, in fact that we sent him to Edmonton for a week with my parents! Alone. Without me. It was very weird. I sent him with very detailed instructions for all of his chemo meds and all of the doses pre-measured, and very detailed instructions for what to do if he got a fever, etc. I will say that as they were leaving, it seemed he and I both had the same thought - he looked at me with an expression that said, is this a good idea? I was thinking the same thing, lol!
It all ended up being fine. He had a blast, visiting with all of his cousins there, he had his 12th birthday there, and was pretty well spoiled by everyone. He is completely exhausted and getting sick, I think (he started sneezing on the way home yesterday), but I am pretty sure he would say it was totally worth it. Hopefully he can fight it off soon; we are supposed to go to Vancouver and stay at RMH next week Friday!
He will have an MRI on Friday to see if the knee pain he was having while running is related to chemo, and hopefully we will see Jasper. It is possible that we won't be able to see him, or only if he isn't sick at all, because Jasper has had a stem cell transplant, and is in strict isolation.
I do have some sad news to report, last week little Lucas went into the hospital in Vernon, and on Wednesday, he passed away. Thank you for your thoughts and prayers. Please continue to pray for his parents, Christian and Nilva, for comfort and peace.
Other than that, we have just been living life. Emily's leg is healing quite nicely, she is on week 4 of the airboot after 6 weeks in a thigh -high cast. All of our kids did well in school -especially Emily, with straight As, so we are pretty proud of her. She won a number of academic awards, so that was pretty cool.
I should get back to packing.... ugh. We are supposed to be out of here by noon and if that happens it will be a miracle. Next post will be showing all y`all the pics of our new place!
Take care,
Monday, May 28, 2012
Maintenance month 1 - done!
Sorry about the length of time between posts - we have been busy living our normal life! : )
We went to Vancouver on May 18, just for the day, which was so weird; we flew out in the morning and came home on the evening flight! Noah had a cold, so we couldn't stay overnight at RMH, and when we were at the hospital he was in isolation.
Jasper came to visit and they both had to wear masks to protect Jasper, because he was going to have his brain tumour removed tomorrow, and a cold is the last things he would need! However, God worked a healing miracle, and Jasper is no longer going to be having surgery tomorrow! This is what his dad, Stephen wrote on Facebook just a few minutes ago:
We went to Vancouver on May 18, just for the day, which was so weird; we flew out in the morning and came home on the evening flight! Noah had a cold, so we couldn't stay overnight at RMH, and when we were at the hospital he was in isolation.
Jasper came to visit and they both had to wear masks to protect Jasper, because he was going to have his brain tumour removed tomorrow, and a cold is the last things he would need! However, God worked a healing miracle, and Jasper is no longer going to be having surgery tomorrow! This is what his dad, Stephen wrote on Facebook just a few minutes ago:
Miracle.
Jasper had an MRI scan late this afternoon to help map the surgery tomorrow. The MRI shows the tumour/scar tissue is 5% the size it originally was. It is the same size as the blood vessels around it! Kinda risky to go after something so small which could all be scar tissue anyways.
So no surgery! We are down to a single round of chemotherapy.
Thanks for your prayers everyone.
Jasper had an MRI scan late this afternoon to help map the surgery tomorrow. The MRI shows the tumour/scar tissue is 5% the size it originally was. It is the same size as the blood vessels around it! Kinda risky to go after something so small which could all be scar tissue anyways.
So no surgery! We are down to a single round of chemotherapy.
Thanks for your prayers everyone.
Isn't that just so awesome??? I am so excited! They are very relieved. We thank God for this healing!
Anyway, back to Noah... (lol)
He had bloodwork done the week before going to Vancouver because he needed to go to the dentist; we thought he had a cavity since his tooth was really hurting him, and had been for a long time. Going to the dentist is a rather lengthy ordeal: he first has to have bloodwork to make sure he has enough platelets in case his mouth bleeds, and also that his immunity is high enough to withstand having someone poke around in his mouth and he needs to take a crazy amount of antibiotics one hour before his appointment- he had seven (yes, 7) 250mg capsules of amoxil! I was surprised how much it was, and so was our family doctor, she called Children's to make sure the dose was correct - she didn't believe it at first : ) Five minutes in, they realized he needed a tooth pulled. He still has a lot of his baby teeth, especially molars, and this one needed pulling. That really caused a stir - are they ALLOWED to pull teeth during treatment? I mean he isn't even allowed to floss! I called our nurse and she said if it was a baby tooth and he had the antibiotics, it was ok. Whew! He was quite nervous, but it took longer to give the freezing than actually pull the tooth! His reaction and his relief was really cute.
So we knew when we went to Vancouver that his counts were pretty low. Actually they were very low, and what they do in Maintenance when a kid's counts are low is take them off of all chemo that would make the counts go down. So for the next week, instead of taking Methotrexate, and 6MP, he was only on Prednisone, since that is supposed to make his counts go up. Only they didn`t; when he went for bloodwork this past Friday, they are still too low for any chemo. He is to go for bloodwork again this Friday and we`ll see if they went up at all so we can start again. Apparently it is quite common for kids in the first few weeks/ months of Maintenance to be off chemo for up to five weeks. Hopefully his counts go up soon. On the other hand, he is feeling really good, except that he STILL has that cold and has since about the second week of April!
He has also been playing soccer and loving it (here he is, # 9)
but has had a bit of trouble with his knees and ankles being stiff and sore, which can be a side effect of Vincristine, one of his chemo drugs. We mentioned it to the doctor when we were in Vancouver, and the doctor who was seeing him sent him for x rays right away and booked an MRI on his knees for the next time we are there. I was quite taken aback at his level of concern and thought he was going a bit over board when our nurse informed me that the steroids that are so awesome at killing cancer cells can also cause Avascular Necrosis, which is bone death, usually at joints. Great. Thankfully his xrays didn't show any damage, so if there is any necrosis, it isn't too advanced, but we'll have to see what the MRI shows.
Not too sure when that will be- could be June 15 or July 13- we are going to try Septra, the antibiotic that he couldn't take at the beginning. The pentamidine treatments are getting more and more difficult for him so his doctor thought he might try the oral antibiotic again, that maybe last March his body was just in shock from all the chemo, etc, that he couldn't take the Septra. As soon as his counts are up he'll try a few days, and see how it goes. If it goes well, we go in July, if not, we will be there in June. What this also means is that if he can take the Septra, we don't have to go back to Vancouver every month, only the ones where he will have an LP, which will be every three months after a while. The rest of the treatments can be done here at our hospital in Smithers. That would be So. Awesome.
It is getting to be bed time so I will write about the Relay for Life that took place here on Saturday and also the results of the Leukemia/Lymphoma fundraiser in the next post. Until then...
Please pray for our other friends who are desperate for the same miraculous healing that Jasper received.
Jordan, age 14, has been diagnosed with a very agressive bone cancer and has only been given months to live by his doctors, but his parents are believing that cancer is not God's will for his people, and have taken him to Texas to a healing room. Their blog: www.jordanshealing.blogspot.ca there is a very helpful section entitled "how to pray".
And also for Lucas, a 15 month old baby with a rare liver cancer. He has had a lot of chemo and also had his tumour removed, but it has since come back and also spread to his lungs. His parents are desperate, and seeking any advice, and covet your prayers. Their website: http://christiannilvaandluc.wix.com/asfund#!home/mainPage
These two boys and their families are constantly in my thoughts and prayers.... please remember them in yours.
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