Noah was admitted to Children's Hospital yesterday. He was battling a cough and looked very white so I decided to call the oncologist to see what their thoughts were. Because I am battling pneumonia I was very concerned. We started in Steinbach but were transported by ambulance to Children's.
The doctors did some blood work and found that Noah's counts are dangerously low, which makes him super prone to infections. We are still waiting for blood cultures to figure out if its bacterial, and where the infection is. If it's in his port, it could mean surgery to remove the port. Which would not be good as this is already Noah's second port on the other side. So for now they are treating it as bacterial until the know otherwise. Noah received a blood transfusion today as well.
There are some things in life you never forget. I will never forget the moment the doctor told us Noah had cancer. I remember the room clearly. The ambulance brought us to the exact same room that we found out Noah was sick July 4, 2012. It was a very odd feeling, seeing him in the room again. Sitting on the same bed, with the same picture of a wooden boat behind him. Me, sitting in the same small brown chair that I was sitting in when I heard the words your son has leukemia. Seeing the doctor leaning on the same counter telling me the risks of what low counts mean. It was a flood of memories and Noah and I both just wanted out of there. Luckily it only took about 3 hours and then we were in his room on CK5. Not the same room we stayed in before.
It's extremely frightening to see your child not well. You add cancer to it and it changes the game entirely. A simple cold is not so simple. Nothing is simple. Watching them access his port while tears pore down his cheeks is not simple. Being strong when the nurses and doctors are right there watching you try to calm your child is not simple. Nothing about having a child with cancer is simple. And some moments, if you let the fear of it all get to you, you feel like you are about to lose control of your entire body, mind and soul. But you can't because your child is depending on you. You have to be the strong one, you have to. There is no choice.
He's only 8. How can he possibly understand all this? And yet he surprises me so much. He is amazing. He is so brave, and strong and funny. I am in awe of my son. How this experience will mold him into a man one day, I can only imagine. But how do I get him there? How can I help him through this when sometimes all I want to do is scream "I HATE YOU CANCER!". And I did scream that, in my van, by myself. I hate this cancer. I hate everything about it. I hate what it has done to my son and our family. I hate seeing all those little ones in cancercare and on the ward battling it. I hate seeing my family suffer from it and die from it. I hate the fear that it brings in those of us that don't have it but surely will one day. I hate it. How do I turn this horrible thing into something good? To learn from? To help others? I just don't know.
And then in moments of clarity, I am so thankful. We have oncologists that we can call 24/7 and they will talk to us. We have a hospital not far away that will take Noah whenever they need to. We have so much. So much.
Thank you for the prayer. Prayer is one of those things where you don't really think you need it or should do it until you have nothing left to do but pray. It's terrible. We should be praying constantly. But we don't. We wait until things get bad and then we beg. But prayer is so important to do all the time. Sometimes I get caught up in how to pray or when or how long. And truthfully, throughout this last year and 5 months, my prayers have often been one word. Sometimes more, sometimes less. I just cant get any words out. Many times it's the word mercy. I can only manage to say the word, but I know that God hears my whole heart. I thank you all who lift us up in prayer when we just can't. It's so powerful, and we often don't realize that.
Melissa
Monday, November 25, 2013
Monday, October 21, 2013
A Reminder
I was reminded the other day of how old Noah really is. I was doing dishes and glanced up out the kitchen window. I seen Noah racing across the yard, running as fast as he could go, holding a paper airplane as high as he could. He had the biggest smile on his face, and that moment of watching him seemed to freeze. It connected with me so powerfully. I instantly was reminded that my son is 8.
This past year, he has been expected to do things that make adults crumble. He has been faced with challenges that a lot of ordinary people would break under the pressure of. He has had to be brave and courageous. He has had to become knowledgeable and responsible for things that kids shouldn't have to be. And I have often forgot that. Throughout these last 16 months, many times I have expected him to do things that are more than incredible. And he has. And so when I seen him flying that airplane across the yard, it made me think of how precious and young and innocent my little boy is. And that he is still capable of being that even after all that he has been through and will continue to face.
It was a huge reminder to me to let him be a kid at all times possible. Because there are still so many times where he has to put on that brave face and have an inch long thick needle pierced though his chest every month. Carrying medicine that kills cells, good and bad. That come with a slew of side effects that make your head spin every time you read them. He still has to take chemo every single day. Every day. And he does, without complaint. Yes, my son is amazing. And I need to let him be that silly fun loving boy more often. I need to do that with all my children. They have all had challenges this last year. I need to be more thankful of the times they are just being kids.
Thank you for your prayer. It is felt. Continue to pray that Noah will beat this cancer. That it will never invade his body again, and that he will gain so much more from having it, than from what he lost as a kid. Pray for Holly, it seems as though she is at her breaking point with Noah. And she is really struggling to tolerate him. Pray for Coltan. The surgeon called and he wants to do another xray or possible CT scan in March after he turns 2. With surgery to remove the malformed part of the lung next year. Pray that when they do the xray or CT, that his lung will be healed. And that surgery will not be necessary. The thought of another child of mine having surgery is too hard right now to think about.
thank you all, Melissa
This past year, he has been expected to do things that make adults crumble. He has been faced with challenges that a lot of ordinary people would break under the pressure of. He has had to be brave and courageous. He has had to become knowledgeable and responsible for things that kids shouldn't have to be. And I have often forgot that. Throughout these last 16 months, many times I have expected him to do things that are more than incredible. And he has. And so when I seen him flying that airplane across the yard, it made me think of how precious and young and innocent my little boy is. And that he is still capable of being that even after all that he has been through and will continue to face.
It was a huge reminder to me to let him be a kid at all times possible. Because there are still so many times where he has to put on that brave face and have an inch long thick needle pierced though his chest every month. Carrying medicine that kills cells, good and bad. That come with a slew of side effects that make your head spin every time you read them. He still has to take chemo every single day. Every day. And he does, without complaint. Yes, my son is amazing. And I need to let him be that silly fun loving boy more often. I need to do that with all my children. They have all had challenges this last year. I need to be more thankful of the times they are just being kids.
Thank you for your prayer. It is felt. Continue to pray that Noah will beat this cancer. That it will never invade his body again, and that he will gain so much more from having it, than from what he lost as a kid. Pray for Holly, it seems as though she is at her breaking point with Noah. And she is really struggling to tolerate him. Pray for Coltan. The surgeon called and he wants to do another xray or possible CT scan in March after he turns 2. With surgery to remove the malformed part of the lung next year. Pray that when they do the xray or CT, that his lung will be healed. And that surgery will not be necessary. The thought of another child of mine having surgery is too hard right now to think about.
thank you all, Melissa
Tuesday, September 17, 2013
The start of school
Another school year started. Noah doesn't complain to go to school, but he sure isn't excited about it either. Plus he just had IV chemo just a few days into the school year so that doesn't make things easier. It seems that every month, the steroids are affecting him more and more. This week he has been increasingly moody. His muscles are sore, he had bad diarrhea and hasn't wanted to eat much. He even crawled into bed with me the other night because he just wasn't feeling good. It's nights like that that I am reminded of just how sick my son is. So often he is well, he is active, he doesn't look sick. And its sometimes easy to forget for a bit that he has cancer. Which is a blessing. I'm not complaining that that's how lucky we have been. It just makes those times where he isn't feeling well, or struggling with friends or school a bit harder to see.
And he does seem to be struggling. He hasn't connected with any of his friends from last year. And I'm not sure why. It could be that they are all so active and involved in sports, and Noah just doesn't fit that mold anymore. His body has taken a blow, and it's been hard for him to catch up physically. I just hate hearing that he spends his recesses alone. He says he doesn't mind, but I think he does. He just seems so afraid to approach his old friends, or anybody in his class even. Its hard to see.
We are still seeing the child psychiatrist. He has been gone all summer so we have only gone 3 times since June. Noah really likes him so hopefully he can help him work out some of these issues.
Yes, some times it's easy to forget my son has cancer. And I need to embrace that feeling more when I get it. Because every time I open facebook and see my mom group for kids with cancer, I see a new little face that's just diagnosed. Or I read another heartbreaking story of another child that earned their angel wings. Or I read of another little one's fight with leukemia that is so much harder than my son's is. It reminds me of just how fragile his life is. Any of our lives are. It's so hard not to ask why. Sometimes I just want an answer. Why do these little ones have to suffer. Why does anyone have to suffer from cancer, or other horrible diseases. It doesn't seem fair.
Our list of prayer requests remains mostly the same. Pray that Noah will beat this cancer and that it never ever comes back. That he will make friends again, and keep up with his school work. That he will really benefit from seeing the psychiatrist and our family life can get a bit more relaxed. That Holly will continue to be healthy, and not hate Noah forever because of how horrible he treats her. That Coltan's lung will be healed and he will never need surgery to remove it. That Chris and I will gain all the wisdom we possibly can for parenting our children. Through sickness and health. Thank you all who pray for us. I am convinced it is what gets us through each day.
Melissa
And he does seem to be struggling. He hasn't connected with any of his friends from last year. And I'm not sure why. It could be that they are all so active and involved in sports, and Noah just doesn't fit that mold anymore. His body has taken a blow, and it's been hard for him to catch up physically. I just hate hearing that he spends his recesses alone. He says he doesn't mind, but I think he does. He just seems so afraid to approach his old friends, or anybody in his class even. Its hard to see.
We are still seeing the child psychiatrist. He has been gone all summer so we have only gone 3 times since June. Noah really likes him so hopefully he can help him work out some of these issues.
Yes, some times it's easy to forget my son has cancer. And I need to embrace that feeling more when I get it. Because every time I open facebook and see my mom group for kids with cancer, I see a new little face that's just diagnosed. Or I read another heartbreaking story of another child that earned their angel wings. Or I read of another little one's fight with leukemia that is so much harder than my son's is. It reminds me of just how fragile his life is. Any of our lives are. It's so hard not to ask why. Sometimes I just want an answer. Why do these little ones have to suffer. Why does anyone have to suffer from cancer, or other horrible diseases. It doesn't seem fair.
Our list of prayer requests remains mostly the same. Pray that Noah will beat this cancer and that it never ever comes back. That he will make friends again, and keep up with his school work. That he will really benefit from seeing the psychiatrist and our family life can get a bit more relaxed. That Holly will continue to be healthy, and not hate Noah forever because of how horrible he treats her. That Coltan's lung will be healed and he will never need surgery to remove it. That Chris and I will gain all the wisdom we possibly can for parenting our children. Through sickness and health. Thank you all who pray for us. I am convinced it is what gets us through each day.
Melissa
Friday, August 9, 2013
Our summer so far
I started this summer feeling nervous. It was the anniversary marking 1 year for Noah's diagnosis of cancer, and I wondered how our summer would go compared to last year. This year I didn't feel that stir crazy feeling that I did the year before. Wondering what I was going to do to keep my kids occupied all summer. This summer, I just feel blessed to have them all at home with me. Yes, they are driving me insane with their fighting, as its gotten really bad. But I remind myself daily that at least this year Noah is not sitting in a hospital bed and having his body be poked constantly, no surgeries and no adjustments to chemo. He's an old pro this summer.
Things have been going so well for him physically. Then we get a reminder that he still has cancer. He was hit with a really bad mouth sore over a week ago. He has had them before, but this was just huge. It was on his top lip and it looked as though someone punched him hard. It was swollen and red and very painful. He is still on the antibiotic for a couple more days and a cream as well. The cream cost just over $100.00 for about an ounce, I just about fell over when I heard that.
Noah has a check up on Monday Aug 12, so hopefully his oncologist will ok him for chemo. He is scheduled to have a spinal on Wednesday Aug 14. This is where he is put to sleep and the chemo is injected into his spine. Now, he only goes for that every 12 weeks.
Emotionally, things are difficult for Noah. Which in turn makes it difficult for everyone. Noah and Holly fight constantly, and I am out of ideas on how to control this. His psychiatrist is on holidays all summer long, so we have no advice in that regard. It's frustrating, and I never pictured my kids acting this way to each other. They can be so hurtful and it breaks my heart to hear them. And as they fight, Coltan watches them and is learning their terrible behavior.
So yes, this summer we are all at home, not in the hospital and together. But we are still fighting. Fighting to be a normal family, when we just aren't. Fighting with each other. Trying to figure out how to teach our kids to just all get along. Sometimes I think Noah should just know how to be thankful, know how to appreciate what he has. But he doesn't. We need to teach him that, even when it seems like it should just be an obvious natural reaction because of what he has gone through and faced.
Please continue to keep us in your prayers. We need them, and we feel them.
Melissa
Things have been going so well for him physically. Then we get a reminder that he still has cancer. He was hit with a really bad mouth sore over a week ago. He has had them before, but this was just huge. It was on his top lip and it looked as though someone punched him hard. It was swollen and red and very painful. He is still on the antibiotic for a couple more days and a cream as well. The cream cost just over $100.00 for about an ounce, I just about fell over when I heard that.
Noah has a check up on Monday Aug 12, so hopefully his oncologist will ok him for chemo. He is scheduled to have a spinal on Wednesday Aug 14. This is where he is put to sleep and the chemo is injected into his spine. Now, he only goes for that every 12 weeks.
Emotionally, things are difficult for Noah. Which in turn makes it difficult for everyone. Noah and Holly fight constantly, and I am out of ideas on how to control this. His psychiatrist is on holidays all summer long, so we have no advice in that regard. It's frustrating, and I never pictured my kids acting this way to each other. They can be so hurtful and it breaks my heart to hear them. And as they fight, Coltan watches them and is learning their terrible behavior.
So yes, this summer we are all at home, not in the hospital and together. But we are still fighting. Fighting to be a normal family, when we just aren't. Fighting with each other. Trying to figure out how to teach our kids to just all get along. Sometimes I think Noah should just know how to be thankful, know how to appreciate what he has. But he doesn't. We need to teach him that, even when it seems like it should just be an obvious natural reaction because of what he has gone through and faced.
Please continue to keep us in your prayers. We need them, and we feel them.
Melissa
Thursday, July 4, 2013
A Year
This week has been filled with emotion. Today, July 4, one year ago was the day we found out Noah had cancer. What a life changing moment that was. I can remember that evening so clearly. And I have been reminded of it often this week as today approached.
I remember the call we got from the nurse telling us to head to Children's immediately. We were grocery shopping in Superstore. We were planning on leaving for our annual family camping trip in 2 days. I was standing in the chip isle. I remember arriving at the hospital, sitting in the Children's emergency waiting area. Then they brought us to an isolation room. We still didn't think it was anything major, they obviously knew otherwise. I remember the doctor apologizing that things were taking so long, and Chris and I looking at each other thinking, we have only been waiting a little while. Oh how our lives were about to change in a matter of minutes, and we had no idea.
I think that perhaps this week has been hard because it is almost mirroring what this week was last year. Packing the camper, getting ready to leave for our annual family camping trip tomorrow. So many things are the same, yet in a completely different way. This time, I am feeling nervous that something will happen to prevent us from leaving again. Noah was so devastated last year when we couldn't go, and so I have been extra paranoid about them getting sick. And of course, Noah has a cough and complained of his chest hurting. Then he burned his leg on the stove climbing to reach something in the cupboard. Holly may have a bladder infection, and Coltan had the diarrhea this week. All these things that would have seemed so insignificant only a year ago. Now could be major complications, even hospital admission.
I don't think that I can accurately describe how cancer changes your life. Unless you have it, or watch someone dear fight it and you fight it with them. It changes absolutely everything. I wish that I could sit here and say that things are better now then they were when we first found out. But really, they aren't. Noah is doing well physically, but emotionally, we are struggling more than ever, And we still have the cancer and chemo to face.
He is so angry, and disobedient. He hates Holly, and does everything he possibly can to hurt her or bug her. He doesn't listen to Chris or I, and we are at the end of our rope. Every day is a constant battle with him. We are seeing a child psychiatrist, but he is off for the entire summer and we only met twice so far. We just don't know what it is, if its the chemo causing it or something else. We have always had a hard time with Noah behavior wise, but this is unbearable.
Its heartbreaking to know that your child is fighting so hard against a terrible disease, and then also have a ton of emotional issues to go with it. The feeling of helplessness is overwhelming. Most days it feels like he truly hates all of us. And then its followed by really tender moments, and moments where he is his funny, silly, helpful self. Its really hard to understand.
When I look back on this year, I can't believe that an entire year of watching my son battle cancer is over. In some ways, it feels like it went by really fast. And to recall all that has happened, all that he has endured, all that we have faced together as a family is remarkable. A year has gone by. An entire year. And he still has more than 2 more years to go. How much chemo can his body handle. How will we get through another year. And another. Its so exhausting.
But, tomorrow we leave for our camping trip. And that is a positive for us. I certainly feel nervous about it though. Being so far away from the hospital. Please pray for us that it all goes well and that we really can enjoy this time together as a family. Pray that Noah will continue to do well and that his attitude towards us and Holly changes, and we can have our sweet funny little boy back. Please pray that Holly and Coltan will remain healthy, not only this week, but always. Pray that Coltan's lung will be healed and that he will never need surgery to remove it. The thought of him going in for surgery is too much some days.
Thank you all for your continual support and prayer. I can't even tell you how much it means to us, and how much it pulls us through each and every day.
I remember the call we got from the nurse telling us to head to Children's immediately. We were grocery shopping in Superstore. We were planning on leaving for our annual family camping trip in 2 days. I was standing in the chip isle. I remember arriving at the hospital, sitting in the Children's emergency waiting area. Then they brought us to an isolation room. We still didn't think it was anything major, they obviously knew otherwise. I remember the doctor apologizing that things were taking so long, and Chris and I looking at each other thinking, we have only been waiting a little while. Oh how our lives were about to change in a matter of minutes, and we had no idea.
I think that perhaps this week has been hard because it is almost mirroring what this week was last year. Packing the camper, getting ready to leave for our annual family camping trip tomorrow. So many things are the same, yet in a completely different way. This time, I am feeling nervous that something will happen to prevent us from leaving again. Noah was so devastated last year when we couldn't go, and so I have been extra paranoid about them getting sick. And of course, Noah has a cough and complained of his chest hurting. Then he burned his leg on the stove climbing to reach something in the cupboard. Holly may have a bladder infection, and Coltan had the diarrhea this week. All these things that would have seemed so insignificant only a year ago. Now could be major complications, even hospital admission.
I don't think that I can accurately describe how cancer changes your life. Unless you have it, or watch someone dear fight it and you fight it with them. It changes absolutely everything. I wish that I could sit here and say that things are better now then they were when we first found out. But really, they aren't. Noah is doing well physically, but emotionally, we are struggling more than ever, And we still have the cancer and chemo to face.
He is so angry, and disobedient. He hates Holly, and does everything he possibly can to hurt her or bug her. He doesn't listen to Chris or I, and we are at the end of our rope. Every day is a constant battle with him. We are seeing a child psychiatrist, but he is off for the entire summer and we only met twice so far. We just don't know what it is, if its the chemo causing it or something else. We have always had a hard time with Noah behavior wise, but this is unbearable.
Its heartbreaking to know that your child is fighting so hard against a terrible disease, and then also have a ton of emotional issues to go with it. The feeling of helplessness is overwhelming. Most days it feels like he truly hates all of us. And then its followed by really tender moments, and moments where he is his funny, silly, helpful self. Its really hard to understand.
When I look back on this year, I can't believe that an entire year of watching my son battle cancer is over. In some ways, it feels like it went by really fast. And to recall all that has happened, all that he has endured, all that we have faced together as a family is remarkable. A year has gone by. An entire year. And he still has more than 2 more years to go. How much chemo can his body handle. How will we get through another year. And another. Its so exhausting.
But, tomorrow we leave for our camping trip. And that is a positive for us. I certainly feel nervous about it though. Being so far away from the hospital. Please pray for us that it all goes well and that we really can enjoy this time together as a family. Pray that Noah will continue to do well and that his attitude towards us and Holly changes, and we can have our sweet funny little boy back. Please pray that Holly and Coltan will remain healthy, not only this week, but always. Pray that Coltan's lung will be healed and that he will never need surgery to remove it. The thought of him going in for surgery is too much some days.
Thank you all for your continual support and prayer. I can't even tell you how much it means to us, and how much it pulls us through each and every day.
Tuesday, May 7, 2013
A picture overview from July 2012 through December 2012 (the faces of Noah)
This is Noah just before he was diagnosed
This is just after he came home from the hospital
This is when he hit his highest weight during the first round of steroids. He gained 20lbs in 3 weeks
But who couldn't love those chubby cheeks:)
The weight is starting to slowly come off
Basically back to "normal"
And then the hardest round of chemo begins
Snuggling with dad during the roughest phase of chemo. During this phase, Noah could hardly walk, couldn't eat or drink because of horrible mouth sores, and was in excruciating pain. He was on morphine to control it. And even with his counts at 0, he never once had to be admitted into the hospital. He did miss the entire month of December for school though.
Still loving his brother during the worst of the chemo
Christmas Eve, 2012. Feeling much better here, ready for the New Year!
Monday, May 6, 2013
The start of Summer
I will try to be more diligent and update more often, but things have been so well lately that it's easy to forget about the blog and updating and reporting the positives. Which is terrible, and something I need to learn to do better at.
Noah is doing well. Really well. He had a bout of mouth sores a couple weeks ago, but through prayer and teeth brushing like mad, they are gone! So thankful for that. He has not gotten the flu, or even so much as a cold throughout this flu season. Its really been a miracle. He continues to go to school full time, missing only 1 day a month for chemo in Winnipeg. His hair has completely grown back and he goes to school and everywhere else without his hat now. Its so nice to see. And I think it makes him feel normal too.
He has started swimming lessons with school and is really enjoying them. I was worried that the kids would question his thin hair, or his scars on his chest from both ports, but its all been really good.
I think we are all feeling really anxious about this summer approaching. Last summer was such a bust, and so this year it feels like we all just cant wait to get in the camper and go! And just do as much as we possibly can.
Noah is still having major attitude problems, and the psychiatrist hasn't contacted us yet. He can be so mean to Holly still, and it just drives Chris and I mad with frustration. So we really need some prayer for that please.
Holly and Coltan are well. Coltan is not showing any signs of his malformations causing problems. He is walking and just so adorable. Holly is almost done preschool and had her kindergarten interview for the fall. She is so looking forward to going. I wish that Noah would be able to help her on the bus and find her class, but they just do not have a good enough relationship. It's sad for me. I just wanted my kids to get along and love and care for each other. But that's not our family. Please pray that will change.
Prayer Requests: That Noah will be healed of this cancer and it will never ever return to his body. That Holly will remain healthy and that Coltan's lung will be healed. That Chris and I will have wisdom as parents should for their children.
Thank you all so much - Melissa-
Noah is doing well. Really well. He had a bout of mouth sores a couple weeks ago, but through prayer and teeth brushing like mad, they are gone! So thankful for that. He has not gotten the flu, or even so much as a cold throughout this flu season. Its really been a miracle. He continues to go to school full time, missing only 1 day a month for chemo in Winnipeg. His hair has completely grown back and he goes to school and everywhere else without his hat now. Its so nice to see. And I think it makes him feel normal too.
He has started swimming lessons with school and is really enjoying them. I was worried that the kids would question his thin hair, or his scars on his chest from both ports, but its all been really good.
I think we are all feeling really anxious about this summer approaching. Last summer was such a bust, and so this year it feels like we all just cant wait to get in the camper and go! And just do as much as we possibly can.
Noah is still having major attitude problems, and the psychiatrist hasn't contacted us yet. He can be so mean to Holly still, and it just drives Chris and I mad with frustration. So we really need some prayer for that please.
Holly and Coltan are well. Coltan is not showing any signs of his malformations causing problems. He is walking and just so adorable. Holly is almost done preschool and had her kindergarten interview for the fall. She is so looking forward to going. I wish that Noah would be able to help her on the bus and find her class, but they just do not have a good enough relationship. It's sad for me. I just wanted my kids to get along and love and care for each other. But that's not our family. Please pray that will change.
Prayer Requests: That Noah will be healed of this cancer and it will never ever return to his body. That Holly will remain healthy and that Coltan's lung will be healed. That Chris and I will have wisdom as parents should for their children.
Thank you all so much - Melissa-
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