Some things I have learned this month:
-when I see an over weight kid throwing a huge fit or crying or freaking out for no apparent reason, I will NOT assume that the parents are push overs and let their child eat and do whatever they want. Their child may have cancer or some other disease and is on steroids.
-when I see a woman out in public, and she looks like a complete and udder mess, I will NOT assume she is lazy and has let herself go. She may be going through the worse time of her life and that 'look' is all she can manage.
-when someone is grouchy to me, such as a clerk or someone serving you (even a waitress), I will not hold it against them. Who knows what trials they are facing away from work.
-When my children have called me back into their room at bedtime for the 15th time, I will still go because they may need to tell me that they feel sad about something and need to know that I care. Even if its late and I am tired, they need to know that I am there for them, always.
-I have learned that a sense of humor can take you a fare bit and lighten your load.
- that tears are ok, even if its in the middle of superstore.
-that God is here. He has always been here and always will be.
-that I still need reminders of simple things everyday.
-prayer is always working, even if you aren't the one able to do it.
more to come, I am sure about that.
Saturday, July 28, 2012
thinking clearly or something like it
It has been 3 1/2 weeks now since we learned Noah has leukemia. Its only now that I am starting to think a bit clearer and remember some things that happened earlier on in his diagnosis. I am having trouble sleeping, and when I lay in bed I think back to that first day in the er at Children's. We had no idea. No idea how our lives were going to change. Its been such a roller coaster.
We are seeing I think the worst of the side effects from the steroids. Noah has been in rages for the last 2 days. Its unbearable. I am exhausted and completely out of ideas on how to control this. I don't think we can. He has gained 10lbs in one week. For a boy who weighed 51lbs, this is a big jump. The chemo he had yesterday causes his nerves to not work as well, and because of the weight gain, his balance is off. He fell yesterday and scraped his knee on the street. Which of course makes me worry now for infection. I hate this. I hate ever single part of this. He doesn't look like my Noah, doesn't act like my Noah. I just want this to be over.
I have found myself questioning if chemo is the right answer. Its so harsh. There are so many things we just don't know, and so many decisions we have to make now. I just want someone to tell me that everything is going to be ok, and actually know that it will be. Not just say it because that's what you say to someone with a child with cancer.
I ran into an old friend today. The week her daughter was killed in an accident, I was only a couple weeks away from my due date with Noah. I remember hugging her at her daughters funeral, and as she hugged me she whispered into my ear to love and take care of this baby. And now here I am, 7 years later. Noah has cancer and there is nothing I can do to take it away. Are we making the right medical choices? I can't take this away from him. I can't make the procedures any less painful. I can't do anything to make this better.
Today she hugged me and whispered into my ear once again. She said she was so sorry that I have to go through this, but in the end we will come out stronger. So maybe she is my someone that knows. Her daughter didn't have cancer, but she died. I still have my son. And even though I don't know the outcome I need to live like I do. So when he screams at me and tells me to stop talking and leave him alone, he still has to get sent to his room.
I'm not sure this post made any sense whatsoever. I am so tired. And just typing away not double checking anything. Just typing any thought that comes into my head. And this is me thinking more clearly...
-Melissa
We are seeing I think the worst of the side effects from the steroids. Noah has been in rages for the last 2 days. Its unbearable. I am exhausted and completely out of ideas on how to control this. I don't think we can. He has gained 10lbs in one week. For a boy who weighed 51lbs, this is a big jump. The chemo he had yesterday causes his nerves to not work as well, and because of the weight gain, his balance is off. He fell yesterday and scraped his knee on the street. Which of course makes me worry now for infection. I hate this. I hate ever single part of this. He doesn't look like my Noah, doesn't act like my Noah. I just want this to be over.
I have found myself questioning if chemo is the right answer. Its so harsh. There are so many things we just don't know, and so many decisions we have to make now. I just want someone to tell me that everything is going to be ok, and actually know that it will be. Not just say it because that's what you say to someone with a child with cancer.
I ran into an old friend today. The week her daughter was killed in an accident, I was only a couple weeks away from my due date with Noah. I remember hugging her at her daughters funeral, and as she hugged me she whispered into my ear to love and take care of this baby. And now here I am, 7 years later. Noah has cancer and there is nothing I can do to take it away. Are we making the right medical choices? I can't take this away from him. I can't make the procedures any less painful. I can't do anything to make this better.
Today she hugged me and whispered into my ear once again. She said she was so sorry that I have to go through this, but in the end we will come out stronger. So maybe she is my someone that knows. Her daughter didn't have cancer, but she died. I still have my son. And even though I don't know the outcome I need to live like I do. So when he screams at me and tells me to stop talking and leave him alone, he still has to get sent to his room.
I'm not sure this post made any sense whatsoever. I am so tired. And just typing away not double checking anything. Just typing any thought that comes into my head. And this is me thinking more clearly...
-Melissa
Wednesday, July 25, 2012
The side effects
The side effects are hard for me to handle. Noah is on a steroid to combat this cancer. But, in the process of killing the leukemia, it also kills the good cells too, and comes with a page long list of side effects. The ones that we are seeing and that are hard are the extreme mood swings. He can be in a fit of almost rage in just a moment. Most is directed at Holly. Which is so hard for her as she has sometimes done nothing or very little to warrant the fit. Last night in the middle of the night as he was eating one of the frozen meals that we have on hand for him, he had a bit of a sore in his mouth and the sauce was burning it. He became furious, but at Holly. It was really hard for me to see, and almost nothing works to calm him down.
The other side effect is the extreme appetite. He will eat meal after meal, non stop all day. Alot of my day is spent in the kitchen preparing food for him. Yesterday he almost polished off an entire jar of pickles. He craves salty and alot of it. The other problem is that the dex (steroid) causes water retention, and paired with the salt, he is very puffy. His belly is 3x the size it was, and his cheeks are completely puffed out and round. This is very different than how he was before. Its hard for me to see. Not only does he act differently, he looks so different as well. And to know that his little body was full of cancer is just heartbreaking.
The dex also causes him to be very hot. He usually has to have a fan on him all the time. He doesn't want to go outside because its so hot lately, and he just doesn't have the energy. Right now, its 10:30am, and he is already having a nap. Yesterday he slept for 2 hours in the afternoon. His sleep at night is disrupted, mostly by the need to eat. He will eat full meals in the night, sometimes several times.
Since his port removal on Friday, he is doing well. The stitches are holding and he is not complaining about them at all. So that has been good. He did however start to complain about pain in his jaw. This was from the chemo he received during the clinic visit on Friday. It causes the nerves to be sensitive and there is a large nerve that runs through the jaw. We cannot give him advil or tylenol. We rather have to take him to our family doctor or the er and get a prescription for morphine. The pain subsided and we didn't end up having to do that. Hopefully this first month will just bring the worst of it and it will be over soon. But we cannot say for certainty that that is the case. We will know more after his next bone marrow aspiration on Aug. 3/12.
Prayer requests: Complete healing for Noah. That the cancer will be completely gone and never return. That the side effects can be managed well.
The other side effect is the extreme appetite. He will eat meal after meal, non stop all day. Alot of my day is spent in the kitchen preparing food for him. Yesterday he almost polished off an entire jar of pickles. He craves salty and alot of it. The other problem is that the dex (steroid) causes water retention, and paired with the salt, he is very puffy. His belly is 3x the size it was, and his cheeks are completely puffed out and round. This is very different than how he was before. Its hard for me to see. Not only does he act differently, he looks so different as well. And to know that his little body was full of cancer is just heartbreaking.
The dex also causes him to be very hot. He usually has to have a fan on him all the time. He doesn't want to go outside because its so hot lately, and he just doesn't have the energy. Right now, its 10:30am, and he is already having a nap. Yesterday he slept for 2 hours in the afternoon. His sleep at night is disrupted, mostly by the need to eat. He will eat full meals in the night, sometimes several times.
Since his port removal on Friday, he is doing well. The stitches are holding and he is not complaining about them at all. So that has been good. He did however start to complain about pain in his jaw. This was from the chemo he received during the clinic visit on Friday. It causes the nerves to be sensitive and there is a large nerve that runs through the jaw. We cannot give him advil or tylenol. We rather have to take him to our family doctor or the er and get a prescription for morphine. The pain subsided and we didn't end up having to do that. Hopefully this first month will just bring the worst of it and it will be over soon. But we cannot say for certainty that that is the case. We will know more after his next bone marrow aspiration on Aug. 3/12.
Prayer requests: Complete healing for Noah. That the cancer will be completely gone and never return. That the side effects can be managed well.
Praising God in the Darkness
If you cannot praise Jesus when times are rough, when can you?
When you worship the Lord in your weakness and distress during the darkest hours, it means more to Him than the millions of angels praising him around His throne in heaven.
Sometimes this is all I have to hold onto, yet it has not failed me even once. I know that Jesus is much, much stronger than this situation, much much stronger than this set of circumstances. It is my life preserver in the midst of a stormy sea.
To know that I have the power to bring joy to the Father's heart, to touch Him like at no other time in my life, reminds me that I must not waste this opportunity.
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Saturday, July 21, 2012
Port removal
Yesterday was Noah's first clinic visit to receive his chemo meds by his central line. When we got there the nurse removed the steri strips and to my horror, seen a gaping hole in Noah's chest with the port clearly visible. I felt sick to my stomach. How could I have missed this? They assured me that this was not our fault, as we were not suppose to remove the bandages at all. But I had been concerned about it since Tuesday already. I had tried to look at it all week, and I had carefully lifted the strips when they had become loose and did not see anything that looked like that. So we think it must have opened Thursday night. So, they could not administer the chemo through the port, they had to start an iv in his hand.
By this time it was 12:30pm, we had all three kids with us at the Cancer Care Clinic and they told us the earliest that they could do Noah's surgery was 6pm that night. We thought it would be best then if we took our other kids back home to be watched while we traveled back for 6 for the surgery. As we walked in the door at 3:15 that afternoon, the surgical ward called saying they could take us at 4pm. I was absolutely furious. Had we known that they could take him that early, we would never have left the hospital. Now, we have spent over 3 hours in the car and need to go back yet. Then when we got to the hospital and spoke to the surgeon, she asked us why we left. She said that she was told we had 'things to take care of'. Again, furious. What things to I have to take care when my son has a gaping hole in his chest and needs surgery?
So then the surgeon proceeds with all the complications that can come from removing a port. Like coils shooting up into his vein and into his heart, in which case they would need to go through his abdomen and remove it from his heart. Chris and I sat there, completely overwhelmed. Now it feels like the risks of this are outweighing the benefit. We later learned that Noah's skin opened up because of the steroids he is on. It makes the body unable to heal as well. If we had known this, we may have waited until this first month of pumping him full of steroids was over, then put the port in. It just feels so rushed. Why did they do it so soon? They told us they do it soon because they do not like to stick kids with iv's. And now, because of this they have to stick him with iv's every week for his chemo meds. They want to book another surgery in 5 weeks to implant another port. Chris and I feel very leery about this. This was so frightening. I can't even explain the feeling of absolute sickness that came over me when they took that bandage off and there was a hole in my sons chest with a metal button sitting right there in plain sight. It was awful. And now, our poor kid has had 2 surgeries in 2 weeks, and been put to sleep an additional two times for spinals and a bone marrow extraction. This is horrible. I hate this.
After the surgery, they let us go home. Which I was/am very nervous about. If I missed a hole in his chest before, how am I suppose to catch something else? He has permanent stitches that need to be removed in 10 days. I can take the bandages off tomorrow and look at the site. Not that I want to. This is so frightening. I feel like I am constantly checking him to feel if he is feverish. Constantly looking at his chest to see if its red or swollen. A fever will land him in the hospital for a few days and can be life threatening.
From that first day on July 4th, when we learned that it was leukemia, the doctors and nurses all told us, you are his parents, you know him best. But I feel like I don't. I feel like I have missed so many things. From the time that his lymph nodes started to blow up in November, to the time 2 weeks ago when he was pale I feel like I should have known. I feel like we are being rushed into decisions when I am not mentally stable enough to make them. I feel like the steroids are turning him into a monster. So if I missed something before when I 'knew' him, what am I missing now? Somebody please tell me this is a horrible dream, and wake me up.
Through all this Noah has been dealing quite well with the iv's and even the surgery. He likes being put to sleep and isn't afraid at all. He wakes up from his anesthetic very well and is actually quite funny. He had the nurses roaring with laughter last night. The other positive is that we found out that Noah is Low-Standard Risk for treatment. When I learn more about what that means I will let you all know. We know its better than High Risk. Some down side things are that the steroids make him unbearable. He screams and yells at us over anything. He cannot calm down very well either. It takes a long time to give him his meds because he hates them so much, and it ends up being a 20 minute fight each time, which can be 6 times a day. He is absolutely horrible to Holly. He wishes her dead even. And when we try to talk to him, he just screams at us and wont even let us speak. It is extremely taxing. And even though we know it is the steroids, it doesn't really make it any easier. Our child still has cancer. And that sucks no matter what.
Noah gets mad at the doctors, and calls them names (not to their face thank goodness) but its still hard to deal with. It seems we can't reason with him. He doesn't understand that its not the doctors fault that he has to go through all this. He doesn't get that they are the ones trying to help. I find it difficult to help Noah with that attitude, because in many ways I feel the same. I sat in the cancer clinic yesterday and felt myself start to fall apart a bit. I didn't want to be there. I did't want to see all those kids with cancer, and know that my own child is one of them. I found myself feeling angry at the people that were smiling and laughing. I hated the wall paper that was on the wall and the leaf printed chairs. I just didn't want to be there. I didn't want this to happen to us. So how am I suppose to tell my son to have a good attitude when I struggle as well. And I am not so naive to think that he cannot sense at least part of what I am feeling. This is so hard. Hard hard hard.
Even though I know that the Lord is carrying us through this, my faith has taken a blow. And perhaps that is the biggest struggle of all. I know that God did not give Noah cancer. I know that. But I just feel like He isn't hearing me. So many times these last couple weeks I have called out to Him, can't you hear me? I am not strong enough for this God. You picked the wrong people. I can't do this. Please pray for us. Because even though I feel hurt and alone by God, I know I am not. But it's hard. I always prayed for my children. I always said, never my children God. And now here we are. I just want to know that at the end of all this, that it won't be all for nothing. That I will still have my Noah. That we will pull through stronger than we were before. That perhaps our story will change someone's life. I just don't want my child to die to learn those things.
This has been a long hard 2 days. And so this post was filled with alot of emotion. I feel at a very low point right now, and its hard to see into the future at all. I have to go day by day.
Prayer Requests: Complete healing for Noah, that the cancer will be gone and never return. For my sanity. For our marriage, to remain strong and healthy. For Holly and Coltan, as this is hard for them too. That Noah will take his meds better. That doing chemo through his iv will be the best option.
And for all of you that have emailed, called, prayed and supported us through this, there are not words that can express how truly grateful we are. When I feel like God isn't hearing me, I know that He is, and that is because of all the prayer we have received. Thank you all so much. -Melissa
By this time it was 12:30pm, we had all three kids with us at the Cancer Care Clinic and they told us the earliest that they could do Noah's surgery was 6pm that night. We thought it would be best then if we took our other kids back home to be watched while we traveled back for 6 for the surgery. As we walked in the door at 3:15 that afternoon, the surgical ward called saying they could take us at 4pm. I was absolutely furious. Had we known that they could take him that early, we would never have left the hospital. Now, we have spent over 3 hours in the car and need to go back yet. Then when we got to the hospital and spoke to the surgeon, she asked us why we left. She said that she was told we had 'things to take care of'. Again, furious. What things to I have to take care when my son has a gaping hole in his chest and needs surgery?
So then the surgeon proceeds with all the complications that can come from removing a port. Like coils shooting up into his vein and into his heart, in which case they would need to go through his abdomen and remove it from his heart. Chris and I sat there, completely overwhelmed. Now it feels like the risks of this are outweighing the benefit. We later learned that Noah's skin opened up because of the steroids he is on. It makes the body unable to heal as well. If we had known this, we may have waited until this first month of pumping him full of steroids was over, then put the port in. It just feels so rushed. Why did they do it so soon? They told us they do it soon because they do not like to stick kids with iv's. And now, because of this they have to stick him with iv's every week for his chemo meds. They want to book another surgery in 5 weeks to implant another port. Chris and I feel very leery about this. This was so frightening. I can't even explain the feeling of absolute sickness that came over me when they took that bandage off and there was a hole in my sons chest with a metal button sitting right there in plain sight. It was awful. And now, our poor kid has had 2 surgeries in 2 weeks, and been put to sleep an additional two times for spinals and a bone marrow extraction. This is horrible. I hate this.
After the surgery, they let us go home. Which I was/am very nervous about. If I missed a hole in his chest before, how am I suppose to catch something else? He has permanent stitches that need to be removed in 10 days. I can take the bandages off tomorrow and look at the site. Not that I want to. This is so frightening. I feel like I am constantly checking him to feel if he is feverish. Constantly looking at his chest to see if its red or swollen. A fever will land him in the hospital for a few days and can be life threatening.
From that first day on July 4th, when we learned that it was leukemia, the doctors and nurses all told us, you are his parents, you know him best. But I feel like I don't. I feel like I have missed so many things. From the time that his lymph nodes started to blow up in November, to the time 2 weeks ago when he was pale I feel like I should have known. I feel like we are being rushed into decisions when I am not mentally stable enough to make them. I feel like the steroids are turning him into a monster. So if I missed something before when I 'knew' him, what am I missing now? Somebody please tell me this is a horrible dream, and wake me up.
Through all this Noah has been dealing quite well with the iv's and even the surgery. He likes being put to sleep and isn't afraid at all. He wakes up from his anesthetic very well and is actually quite funny. He had the nurses roaring with laughter last night. The other positive is that we found out that Noah is Low-Standard Risk for treatment. When I learn more about what that means I will let you all know. We know its better than High Risk. Some down side things are that the steroids make him unbearable. He screams and yells at us over anything. He cannot calm down very well either. It takes a long time to give him his meds because he hates them so much, and it ends up being a 20 minute fight each time, which can be 6 times a day. He is absolutely horrible to Holly. He wishes her dead even. And when we try to talk to him, he just screams at us and wont even let us speak. It is extremely taxing. And even though we know it is the steroids, it doesn't really make it any easier. Our child still has cancer. And that sucks no matter what.
Noah gets mad at the doctors, and calls them names (not to their face thank goodness) but its still hard to deal with. It seems we can't reason with him. He doesn't understand that its not the doctors fault that he has to go through all this. He doesn't get that they are the ones trying to help. I find it difficult to help Noah with that attitude, because in many ways I feel the same. I sat in the cancer clinic yesterday and felt myself start to fall apart a bit. I didn't want to be there. I did't want to see all those kids with cancer, and know that my own child is one of them. I found myself feeling angry at the people that were smiling and laughing. I hated the wall paper that was on the wall and the leaf printed chairs. I just didn't want to be there. I didn't want this to happen to us. So how am I suppose to tell my son to have a good attitude when I struggle as well. And I am not so naive to think that he cannot sense at least part of what I am feeling. This is so hard. Hard hard hard.
Even though I know that the Lord is carrying us through this, my faith has taken a blow. And perhaps that is the biggest struggle of all. I know that God did not give Noah cancer. I know that. But I just feel like He isn't hearing me. So many times these last couple weeks I have called out to Him, can't you hear me? I am not strong enough for this God. You picked the wrong people. I can't do this. Please pray for us. Because even though I feel hurt and alone by God, I know I am not. But it's hard. I always prayed for my children. I always said, never my children God. And now here we are. I just want to know that at the end of all this, that it won't be all for nothing. That I will still have my Noah. That we will pull through stronger than we were before. That perhaps our story will change someone's life. I just don't want my child to die to learn those things.
This has been a long hard 2 days. And so this post was filled with alot of emotion. I feel at a very low point right now, and its hard to see into the future at all. I have to go day by day.
Prayer Requests: Complete healing for Noah, that the cancer will be gone and never return. For my sanity. For our marriage, to remain strong and healthy. For Holly and Coltan, as this is hard for them too. That Noah will take his meds better. That doing chemo through his iv will be the best option.
And for all of you that have emailed, called, prayed and supported us through this, there are not words that can express how truly grateful we are. When I feel like God isn't hearing me, I know that He is, and that is because of all the prayer we have received. Thank you all so much. -Melissa
Thursday, July 19, 2012
For the kids
When we first started this blog, the intent was to keep you all informed about Noah and updated. I didn't realize that I would use it so much as an outlet for my emotions. So, as I speak to some of my friends and family that have children, I learned that they are reading some of what we blog to them. Which is totally fine and wonderful. But I do realize that some of it may be hard to read and hard for them to understand as well. Nevermind all the questions that they have. So I thought that I should write something to all the kids that would like to hear about Noah, so here goes...
Hi there guys, this is Noah's mom. Some of you know me as Noah's mom:), Miss Melissa, or in very special circumstances Missy:) I thought that I should let you know how Noah is feeling these days. He is home from the hospital and having fun playing video games. Its hard for him to play outside because he gets tired very easily. And he should not be in the sun too much either. Noah has to take alot of medicine that is not very fun, so if you could remember to pray for him that taking his medicine would get easier, that would be great! One thing that lots of kids want to know, is what will happen when Noah loses his hair? Noah feels ok about losing his hair, but let's remember not to laugh when that happens because that will hurt his feelings. And besides, it will grow back one day. Some of you may want to know whats wrong with Noah. Noah has something called leukemia. That is also called cancer. Cancer can be a very scary word because maybe you had a grandma or a grandpa that had cancer and got very very sick, or even died. But cancer in kids is different that in adults. So let's remember to pray everyday that Noah's cancer will go away and never come back. I hope that this helps you understand a little bit about what's happening to Noah. But if you have questions, you can always ask your mom and dad, and if they don't know the answer, maybe you could send me a message or even Noah and we can send you a message back! Have fun, and remember to pray for Noah. Melissa
Hope this helps a bit with reading some of our story to your children. God hears their prayers too, and its so very important.
Hi there guys, this is Noah's mom. Some of you know me as Noah's mom:), Miss Melissa, or in very special circumstances Missy:) I thought that I should let you know how Noah is feeling these days. He is home from the hospital and having fun playing video games. Its hard for him to play outside because he gets tired very easily. And he should not be in the sun too much either. Noah has to take alot of medicine that is not very fun, so if you could remember to pray for him that taking his medicine would get easier, that would be great! One thing that lots of kids want to know, is what will happen when Noah loses his hair? Noah feels ok about losing his hair, but let's remember not to laugh when that happens because that will hurt his feelings. And besides, it will grow back one day. Some of you may want to know whats wrong with Noah. Noah has something called leukemia. That is also called cancer. Cancer can be a very scary word because maybe you had a grandma or a grandpa that had cancer and got very very sick, or even died. But cancer in kids is different that in adults. So let's remember to pray everyday that Noah's cancer will go away and never come back. I hope that this helps you understand a little bit about what's happening to Noah. But if you have questions, you can always ask your mom and dad, and if they don't know the answer, maybe you could send me a message or even Noah and we can send you a message back! Have fun, and remember to pray for Noah. Melissa
Hope this helps a bit with reading some of our story to your children. God hears their prayers too, and its so very important.
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