As we began this second fight, we had a long meeting with our oncology team who told us as much as they could about what we were facing, but at that point the knowledge of our future ended 28 days from that point. After that, there were so many possible treatment protocols based on whether or not Nevan was in remission, how far into remission, whether he was accepted to the clinical trial we requested to be a part of etc. Without these answers we had no idea what life had in store for us.
Finally after a very nerve wracking month of high intensity chemo, Nevan had a bone marrow biopsy and showed that his cancer was in remission and low enough to move forward on the low risk standard protocol arm of our treatment plan. We also found out that we were not accepted into the trial that we requested. We weren't entirely sure how to feel about this as both us and our team spent weeks preparing for participation into the trial. If Nevan was not as far into remission as he was or not handling the chemo as well as he had been, I think Craig and I would have been more concerned, but since all the news we received thus far was good, we both are relieved that we will not be introducing any more chemicals into an already full treatment plan and allowing Nevan to have a slightly better quality of life as we navigate through the next few months.
Although his treatment plan is very complex and intense we will try our best to give an overview as to what the next 23 months of Nevan's treatment will look like. Everything is subject to change based on his daily blood counts, remission status and tolerance of the chemo and meds.
To start, Nevans cancer is in remission. While this is great news, it does not mean that his cancer is gone. What it means is that in a small test sample of blood, there were little to no cancer cells found... again.. amazing news! However this small sample of blood does not represent his whole body and we need to continue to treat for 2 years to ensure that every last cancer cell has been eradicated. The treatment protocol for relapsed ALL is not easy.
For those who followed us through his first 2 year battle with Leukemia, this time around will be more difficult with stronger and larger doses of chemotherapy drugs. The layout of chemotherapy is more frequent and overlapping within the protocol. The number of days Nevan will be neutropenic will be much greater than before. The long term side effects and possible damage to his brain and organs has increased drastically and his chance of life-long remission has dropped to 50% from 90%.
The month of February will be almost as aggressive as the first 4 weeks of treatment and will be followed by one last bone marrow aspiration to determine if his cancer is still in remission. After that the month of March will be a similar treatment as February. April and May are considered one block of treatment and will be slightly less aggressive than March. June and July will be a repeat of April and May. August he starts what's called maintenance phase. It has three initial blocks which are August, September, and October of this year. In November he moves into full maintenance which will repeat itself monthly until December of 2017.
Confused yet?! We are slowly figuring it out ourselves. Basically we will continue to push high levels of toxic drugs into him for the next several months. He will continue to visit the hospital several times per week. He will be admitted for treatment some days or if he gets a fever or doesn't tolerate the therapy. He will receive chemotherapy, steroids, several antibiotics and other preventative medication at home daily.
He will miss school for the rest of this semester and not be able to participate in any extra curricular activities or sports. He will feel horrible many days and will have to be kept away from sick people for the entire 2 years. He will be home schooled and tutored until the fall but may return to school as early as May. Nothing is firm right now. Some things we plan will be cancelled and everything can change or be shifted with very little notice.
The battle has just begun...
CUTE STORY OF THE DAY
After watching Nevan and Nylah proudly wearing a different outfit every day (Awesome Xmas gifts from family and friends)...
Daddy: "Ok... why do you guys have a way better wardrobe than I do?"
Without even looking up from what she was doing...
Nylah..." because we are cute... and you are old."
Nothing makes 37 feel old like the words of a 5 year old!
Tuesday, February 16, 2016
Sunday, February 14, 2016
4 of 104 (dad)
Even if he has to repeat what he already has done it doesn't seem doable. Brave? No I struggle with that word. Bravery is about choice. Even at 4 years old he realized he had to or he would die. When I think of what we are forcing him to do I think of my own childhood. I think of how I remember my youth. The magic of it all. Not a worry or care. No stress or unreasonable requests. No threats or ultimatums. Will Nevan or even Nylah remember what the magic of being a young innocent child felt like. Or have we stolen that to save his life...
I can't put into words any better than Anita did of finding out his Cancer relapsed. The first few days were full of tears. We couldn't sleep for the first while at all. How could this happen? What could we have done wrong? What could we have missed? There is nothing we did wrong or missed. Not one change in what we or any nurse or Doctor did would have changed his fate. 60 years ago Nevan would be gone and from a flu bug by most indications. How grateful we are to know exactly why he is sick and even more grateful to have some way to try and save him. We show that gratitude every day by being co-operative and understanding with the Oncology team. They too have to carry this burden and have chosen a career that requires not only an intellectual component but an emotional one. I can't say enough how impressed I am with the oncology team we have and how well they know their jobs and even more so how much they care about our Family. When every Doctor meets you with tears or long faces you know that this shouldn't have happened. That we are all on the same page. That this is bullshit.....
I honestly can't articulate how I feel right now. We are grateful for the help he will receive but very aware that he is in great danger. The odds are horrifying. Being told your child has a 10% chance of dying is hard to stomach on top of what you have to do to achieve the 90% recovery. And now he has 50% chance. That number is so bad we can't even register its meaning. At this point its the fact that it came back at all that terrifies us. He had no serious complications from the first treatment. To be clear there were lots of ups and downs and nasty horrible days but he completed the treatment with no damage to his body as we could see. He finished all the leg needles which some kids body's cant handle. He made it to every treatment snow storm or not. He never missed a medication. He did what was asked. His numbers were always stable and when treatment was done his body recovered well. We shouldn't be here. Our only resolve is that one of the cells went dormant and the next 2 years will ensure we eradicate whatever was hiding.
The first four weeks of his treatment were not what we expected. Technically he should have stayed in the hospital the whole time however he came into this feeling very well. Because his body tolerated the initial days and because the team know us and trust us to watch him we were allowed LOA's often. Unfortunately his treatment started days before Christmas and because of the toxicity of the one drug he was required to stay Christmas eve for flushing and observation. I was very upset that we couldn't be together over Christmas eve. I have very few traditions in my family but Christmas comes with high expectations from me. I was aloud to bring him back home but needed to return by 9pm. The Magic of Christmas eve was lost anyway because he was too high on Dex to care about anything. I drove him back to the hospital around 7pm instead. In the morning I had the nurses do blood work at 6am sharp. We left right after so that he could be there to see the tree lit up with presents under it while it was still dark out. We waited until late morning to give him his Dex so he could enjoy the morning with us.
Christmas wasn't the same this year. We didn't get to do a lot of the small things we consider our traditions. We spent some of the time apart and the things we did do were cut short or interrupted by meds and moods. We could have had a much worse Christmas though. We did get Nevan home for some of the holidays and he didn't complain about missing out on anything. Partly because of how laid back he is and partly because he was already exhausted from the treatment. He was also on steroids which affected his mood and energy and was content to just relax most of the time. Him and Nylah were both spoiled by Santa, Grandparents, Uncles and Aunties and the hospital. Nevan was diagnosed only weeks before Christmas and yet on Christmas morning one of his gifts was a small bear with his name stitched to its clothing. I was very impressed by this but not surprised. The amount of support from Child Life and volunteers and agencies and charities these kids get is enormous at Mac. Together they make being in the hospital happy :). So even though we didn't get to do Christmas the way we usually do, we still all felt the magic of the season. A little snow would have helped with that too.
Moving past the holidays Nevan had a few ups and downs. The layout of his treatment was not what we expected. I hesitate to use the word but it seemed easier than we were expecting. He got to have a few breaks from chemo and steroids. He was discharged on several occasions which technically isn't supposed to happen. The protocol is meant to be completed as an inpatient treatment however Nevan tolerated the high dose chemotherapy and was doing well. He was allowed to go home and even treated through the clinic on several occasions. This awesome perk came to an end towards the last week of his first block ( a block of treatment is 28 days usually ). After completing and clearing one of the medications he was discharged. I walked him to the elevator where while waiting he told me that his eyes seemed fuzzy. I told him that in a few seconds he would be sitting in the van where he would feel better. I assumed he'd been sitting too long in the hospital bed and had grown a little weak. I was wrong. The initial drop of the elevator brought Nevan down with it. I had my arm around him holding him close but my other hand had his pillow and blanket in it. He unfolded beside me like a marionette that just had its string cut. It all happened so fast and my reaction time is slow compared to some. I guided him to the ground and once the elevator stopped picked him up with one arm and asked him if he could here me. His eyes drifted as he fell but once I had him in my arms he seemed to be snapping out of it. Fortunately there were mirrors in the elevator so I could see his face. There was also a nice lady with us that sent the elevator back up to the ward. I'm pretty sure I scared the hell out of her but I told her he and I were fine. I went back up to the ward where one of the nurses noticed I had come back with him. I told her Nevan had fainted and then about 10 people ran us into his room. The team quickly discovered that his Hemoglobin was too low and we proceeded with a blood transfusion. Once the transfusion was complete they said we could go home again. I thought this was odd but considering Nevan was feeling well and all other vitals were fine and also that Mom and I are competent I took him and left. By the time we got home it was past his bedtime. At midnight he woke Anita because he was restless. At 2:00 am he woke her because his stomach hurt and by 3 he had a fever. Anita packed and left with him around 4:00 am. Our easy road had ended. The team talked to us and decided that it would just be safer and easier for everyone if we stayed now until we completed his bone marrow aspiration which was a week away. His fever disappeared and several tests came back negative. Anita and I talked and decided that no one should see Nevan if they or anyone in there family was ill in anyway within 48 hours. This blanket rule ensures Nevan stays as healthy as possible. It also keeps our stress low so we don't have to negotiate with people or worry about the what ifs. This rule applies to colds as well because we think he is dealing with enough and so are we. We are not depressed or feeling isolated. We are just protecting the 4 of us. There will be a time for visits and get togethers and we appreciate everyone's patience as we make these decisions.
This pretty much sums up the first 4 weeks. Its been a busy time and we've been using Facebook to give everyone recent news. The next post will be about Nevan's remission status and details of his 2 year treatment plan. Another 104 weeks of therapy followed by another 1 year off therapy and a 5 year milestone of cancer free followed by a lifetime of worry. And that's if everything goes according to plan.
I can't put into words any better than Anita did of finding out his Cancer relapsed. The first few days were full of tears. We couldn't sleep for the first while at all. How could this happen? What could we have done wrong? What could we have missed? There is nothing we did wrong or missed. Not one change in what we or any nurse or Doctor did would have changed his fate. 60 years ago Nevan would be gone and from a flu bug by most indications. How grateful we are to know exactly why he is sick and even more grateful to have some way to try and save him. We show that gratitude every day by being co-operative and understanding with the Oncology team. They too have to carry this burden and have chosen a career that requires not only an intellectual component but an emotional one. I can't say enough how impressed I am with the oncology team we have and how well they know their jobs and even more so how much they care about our Family. When every Doctor meets you with tears or long faces you know that this shouldn't have happened. That we are all on the same page. That this is bullshit.....
I honestly can't articulate how I feel right now. We are grateful for the help he will receive but very aware that he is in great danger. The odds are horrifying. Being told your child has a 10% chance of dying is hard to stomach on top of what you have to do to achieve the 90% recovery. And now he has 50% chance. That number is so bad we can't even register its meaning. At this point its the fact that it came back at all that terrifies us. He had no serious complications from the first treatment. To be clear there were lots of ups and downs and nasty horrible days but he completed the treatment with no damage to his body as we could see. He finished all the leg needles which some kids body's cant handle. He made it to every treatment snow storm or not. He never missed a medication. He did what was asked. His numbers were always stable and when treatment was done his body recovered well. We shouldn't be here. Our only resolve is that one of the cells went dormant and the next 2 years will ensure we eradicate whatever was hiding.
The first four weeks of his treatment were not what we expected. Technically he should have stayed in the hospital the whole time however he came into this feeling very well. Because his body tolerated the initial days and because the team know us and trust us to watch him we were allowed LOA's often. Unfortunately his treatment started days before Christmas and because of the toxicity of the one drug he was required to stay Christmas eve for flushing and observation. I was very upset that we couldn't be together over Christmas eve. I have very few traditions in my family but Christmas comes with high expectations from me. I was aloud to bring him back home but needed to return by 9pm. The Magic of Christmas eve was lost anyway because he was too high on Dex to care about anything. I drove him back to the hospital around 7pm instead. In the morning I had the nurses do blood work at 6am sharp. We left right after so that he could be there to see the tree lit up with presents under it while it was still dark out. We waited until late morning to give him his Dex so he could enjoy the morning with us.
Christmas wasn't the same this year. We didn't get to do a lot of the small things we consider our traditions. We spent some of the time apart and the things we did do were cut short or interrupted by meds and moods. We could have had a much worse Christmas though. We did get Nevan home for some of the holidays and he didn't complain about missing out on anything. Partly because of how laid back he is and partly because he was already exhausted from the treatment. He was also on steroids which affected his mood and energy and was content to just relax most of the time. Him and Nylah were both spoiled by Santa, Grandparents, Uncles and Aunties and the hospital. Nevan was diagnosed only weeks before Christmas and yet on Christmas morning one of his gifts was a small bear with his name stitched to its clothing. I was very impressed by this but not surprised. The amount of support from Child Life and volunteers and agencies and charities these kids get is enormous at Mac. Together they make being in the hospital happy :). So even though we didn't get to do Christmas the way we usually do, we still all felt the magic of the season. A little snow would have helped with that too.
Moving past the holidays Nevan had a few ups and downs. The layout of his treatment was not what we expected. I hesitate to use the word but it seemed easier than we were expecting. He got to have a few breaks from chemo and steroids. He was discharged on several occasions which technically isn't supposed to happen. The protocol is meant to be completed as an inpatient treatment however Nevan tolerated the high dose chemotherapy and was doing well. He was allowed to go home and even treated through the clinic on several occasions. This awesome perk came to an end towards the last week of his first block ( a block of treatment is 28 days usually ). After completing and clearing one of the medications he was discharged. I walked him to the elevator where while waiting he told me that his eyes seemed fuzzy. I told him that in a few seconds he would be sitting in the van where he would feel better. I assumed he'd been sitting too long in the hospital bed and had grown a little weak. I was wrong. The initial drop of the elevator brought Nevan down with it. I had my arm around him holding him close but my other hand had his pillow and blanket in it. He unfolded beside me like a marionette that just had its string cut. It all happened so fast and my reaction time is slow compared to some. I guided him to the ground and once the elevator stopped picked him up with one arm and asked him if he could here me. His eyes drifted as he fell but once I had him in my arms he seemed to be snapping out of it. Fortunately there were mirrors in the elevator so I could see his face. There was also a nice lady with us that sent the elevator back up to the ward. I'm pretty sure I scared the hell out of her but I told her he and I were fine. I went back up to the ward where one of the nurses noticed I had come back with him. I told her Nevan had fainted and then about 10 people ran us into his room. The team quickly discovered that his Hemoglobin was too low and we proceeded with a blood transfusion. Once the transfusion was complete they said we could go home again. I thought this was odd but considering Nevan was feeling well and all other vitals were fine and also that Mom and I are competent I took him and left. By the time we got home it was past his bedtime. At midnight he woke Anita because he was restless. At 2:00 am he woke her because his stomach hurt and by 3 he had a fever. Anita packed and left with him around 4:00 am. Our easy road had ended. The team talked to us and decided that it would just be safer and easier for everyone if we stayed now until we completed his bone marrow aspiration which was a week away. His fever disappeared and several tests came back negative. Anita and I talked and decided that no one should see Nevan if they or anyone in there family was ill in anyway within 48 hours. This blanket rule ensures Nevan stays as healthy as possible. It also keeps our stress low so we don't have to negotiate with people or worry about the what ifs. This rule applies to colds as well because we think he is dealing with enough and so are we. We are not depressed or feeling isolated. We are just protecting the 4 of us. There will be a time for visits and get togethers and we appreciate everyone's patience as we make these decisions.
This pretty much sums up the first 4 weeks. Its been a busy time and we've been using Facebook to give everyone recent news. The next post will be about Nevan's remission status and details of his 2 year treatment plan. Another 104 weeks of therapy followed by another 1 year off therapy and a 5 year milestone of cancer free followed by a lifetime of worry. And that's if everything goes according to plan.
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