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.
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