Noah's oncologist told me last week that he has done remarkably well. And he has, but this last round (the last 3 weeks) has been really hard. He was back on the steroids and we seen it full throttle. The mood swings were way worse this time. He would scream at us and demand things. Throw himself into fits of rage. He was exceptionally hard on Holly and would say really mean things to her. He ate alot, but certainly not like month one. He has been up the last few nights to eat twice, and has a really hard time sleeping.
Yesterday was one of our hardest days yet. He was in alot of pain in his back. He couldn't sit stand or walk. He just rolled in his bed crying and screaming. It was awful to watch. Its so hard to see your child in pain and there's nothing you can do to take it away. I spent an hour trying to get a hold of an oncologist to tell me if I could give him morphine. He can't have tylenol or advil because it could mask a fever. And a fever is an emergency which we would then need to take him to Children's. Combined with Noah's pain, he is then screaming at me demanding that I call the doctors. Finally the Dr on call calls me back and says yes I can give him morphine. I by chance had 3 pills left over from when his second port was put in so I gave him one. But they said to give it every 2hrs to get on top of the pain so I had to call my family dr and get a prescription for more. It took just over half an hour but the morphine started to work.
I knew this round was going to be hard. They told us it would be, they told us to expect it. But even if you think you are prepared for a rough road, nothing prepares you to see your child sick and in pain. Its excruciating to watch.
As I was rubbing his head, trying to console him, I looked at my hand and it was full of his hair. Again something we have been preparing for but is hard when it happens. Chris shaved alot off his head last night, and its now very thin. It won't be long before its gone. It was easy to 'forget' that Noah was sick. He didn't look sick. He didn't really act sick. He was mostly able to go to school and play hockey. But not anymore. Hockey will hopefully resume in the new year. But for now, its hard to get him off the couch. With his hair going, its easier to see the sickness. To recognize it. And for others too.
Right now his counts are low, but hopefully they will build back up by next week. If they are up, he will be admitted Tuesday December 4th for one night. They will administer a new chemo drug that he has never had, and keep him over night on IV. Then on Wednesday Dec 5 he will be put to sleep for a spinal. I think then we will be given another chemo drug that we give everyday orally at home for a month. IF he is on track. Normally, kids need more than this one week break between the steroids. Some need 3 weeks. Pray that Noah can stay on track and be able to continue treatment with no delays. Its not the end of the world if its delayed, but it would be nice to have this phase over with.
Please pray that Noah will be well for Christmas. That we can be with our family like always. I feel like some things in life become more serious when you have a seriously ill child, and other things need to be taken more lightly. There is so much we are learning in this process. Its changing all of us, our families, friends.
Other prayer requests: Coltan has been diagnosed with having a CCAM (congenital cystic adenomatoid malformation) combined with low bar emphazema. Nothing to worry about now, but if symptoms arise we may need to do surgery to remove the malformed part of his lung. Most children with this need surgery at some point. And Holly is taking the brunt of Noah's moods. She handles it well, but she is a girl and her feelings get hurt very easily. She does seem to have a good understanding of the medications and that that's what makes Noah so mean.
Please pray for strength for Chris and I. Its hard to see our children be ill. To have words like chemo, survival rates, and surgery be part of our daily vocabulary.
Thank you for all your support. We feel your prayers everyday. Without them we couldn't function as we do. On a side note, we have been given the date for Noah's LAST chemo treatment. September 11, 2015.
Melissa
Tuesday, November 27, 2012
Thursday, November 8, 2012
something to pray for
I thought I would post a list of the side effects that the chemo drugs Noah is currently on can cause. Then we can request specific prayer for those things.
Drug: Dexamethasone
Side Effects: moodiness, extreme irritability to rage. Increased appetite and food obsessions. Increased thirst, indigestion, weight gain, fluid retention. Round face and protruding belly, sleeplessness, nightmares, nervousness, restlessness, hyperactivity. Loss of potassium, loss of bone mass. Hypersensitivity to lights, sound and motion. Decreased or blurred vision, seeing halos around lights, sweating, weakness, muscle cramps or pain, swelling of feet and lower legs, high blood pressure, high blood sugar, and hallucinations.
Drug: Ondansetron
Side Effects: headache, diarrhea, constipation
Drug: Vincristine
Side Effects: severe constipation, pain in jaw/face/back/joints/bones. Foot drop, numbness/tingling or pain in fingers or toes. Extreme weakness and loss of muscle mass. Drooping eyelids, hair loss, pain blisters and skin loss. Headaches, dizziness, seizures, paralysis.
Drug: Doxorubicin
Side Effects: low blood counts which may increase the risk of infection or bleeding and cause weakness, fatigue and paleness. Nausea and vomiting, hair loss, mouth sores. Loss of appetite, diarrhea, heart damage, shortness of breath, fever and chills, abdominal pain, dark or bloody stools, darkening or ridging of nails.
Drug: Asparaginase
Side Effects: Loss of appetite and weight, fatigue, headaches, abdominal cramps, nausea and vomiting. Allergic reaction, jaundice, confusion or hallucinations, convulsions, swelling of feet or legs, frequent urination, high blood pressure, kidney or liver damage, stroke, inflammation of the pancreas, excessive bleeding, blood clots.
Drug: Septra
Side Effects: stomach upset, skin rashes, sun sensitivity, low blood counts.
These are all the drugs that Noah is currently on. Below is a quote from the cancer book the hospital gave us. Its from a parent of a child with leukemia. It explains very well what I experience daily.
"Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness."
It's so hard to write exactly how I am feeling. To know that we have to inject his little body with these drugs that cause these horrible effects. To know that the alternative is surely death. People will say to me all the time that I am so strong and doing a good job. That if anyone could handle this, it would be me. But the truth is that anyone can do this. I have no choice. This is our life. There is no alternative. You would do the same. I'm just a mom of a child with cancer trying to survive it too.
Drug: Dexamethasone
Side Effects: moodiness, extreme irritability to rage. Increased appetite and food obsessions. Increased thirst, indigestion, weight gain, fluid retention. Round face and protruding belly, sleeplessness, nightmares, nervousness, restlessness, hyperactivity. Loss of potassium, loss of bone mass. Hypersensitivity to lights, sound and motion. Decreased or blurred vision, seeing halos around lights, sweating, weakness, muscle cramps or pain, swelling of feet and lower legs, high blood pressure, high blood sugar, and hallucinations.
Drug: Ondansetron
Side Effects: headache, diarrhea, constipation
Drug: Vincristine
Side Effects: severe constipation, pain in jaw/face/back/joints/bones. Foot drop, numbness/tingling or pain in fingers or toes. Extreme weakness and loss of muscle mass. Drooping eyelids, hair loss, pain blisters and skin loss. Headaches, dizziness, seizures, paralysis.
Drug: Doxorubicin
Side Effects: low blood counts which may increase the risk of infection or bleeding and cause weakness, fatigue and paleness. Nausea and vomiting, hair loss, mouth sores. Loss of appetite, diarrhea, heart damage, shortness of breath, fever and chills, abdominal pain, dark or bloody stools, darkening or ridging of nails.
Drug: Asparaginase
Side Effects: Loss of appetite and weight, fatigue, headaches, abdominal cramps, nausea and vomiting. Allergic reaction, jaundice, confusion or hallucinations, convulsions, swelling of feet or legs, frequent urination, high blood pressure, kidney or liver damage, stroke, inflammation of the pancreas, excessive bleeding, blood clots.
Drug: Septra
Side Effects: stomach upset, skin rashes, sun sensitivity, low blood counts.
These are all the drugs that Noah is currently on. Below is a quote from the cancer book the hospital gave us. Its from a parent of a child with leukemia. It explains very well what I experience daily.
"Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness."
It's so hard to write exactly how I am feeling. To know that we have to inject his little body with these drugs that cause these horrible effects. To know that the alternative is surely death. People will say to me all the time that I am so strong and doing a good job. That if anyone could handle this, it would be me. But the truth is that anyone can do this. I have no choice. This is our life. There is no alternative. You would do the same. I'm just a mom of a child with cancer trying to survive it too.
Monday, November 5, 2012
A day in the life
Just thought I would send a quick update. Noah is doing well. He started hockey, but he doesn't always feel up to going. He's such a little man, so he won't tell you if he's not feeling well, he instead just shrugs his shoulders, mumbles something after I ask him what the matter is, and doesn't give us a real indication why he doesn't always want to play. My best guess is that his counts are dropping and his body is just feeling tired and not doing what he is used to it doing. So, we have hockey tonight, and we will see how it goes. Tomorrow is just a check up at cancer clinic and Wednesday he is put to sleep for another spinal. Which he doesn't mind. He likes the sleep part. Which is nice. Today he had a blood test and freaked out. He just had it done in the cancer care clinic in Steinbach, and so I get that they aren't use to children (sorry my font changed and I have no idea how to change it back!) but it was a little frustrating. He was suppose to have a finger poke, and so that is what I prepared him for. But the lab tech wanted to do an arm poke. So Noah became very upset and hid his arms and refused to let them touch him. I had to strongly encourage him that it would be fine, that he has had like a hundred arm pokes but it was no use. Finally the lab tech just did a finger poke. Its hard to see him feel so scared. I found myself feeling mad and frustrated and very done with all the procedures that he has had and will have. And then knowing that we aren't done. Not even close to being done with it all. Knowing how much more he will have to endure became very overwhelming.
Its more now too because Coltan will have to have a CT scan for is malformed lung. The doctors called today and told us they changed their minds and that Coltan needs it done within a month. He will be sedated, have a breathing tube inserted and have them breathe for him. Then in recovery for awhile. Its all so overwhelming. To look at my children and see them go through these procedures can be too much to take in some days. Today is that day where I feel very done with it all. I just want healthy children. I don't want to take them to the hospital anymore. I want to know that they will be just fine.
There are just days when it all feels too much. Today is a day like that. But I have no choice. I can't hide under my blankets and sleep away the day. I can't go to the mall and get lost for awhile. I have three children that all need me. But some days that's what I feel like doing. Disappear for a bit. Go to the store and not run into someone I know. Hide out until things settle.
So if I can't do those things, I then will pray. It sounds so like the 'right' thing to do. Or what everyone tells you to do. But truthfully, it the ONLY thing to do. I can't heal my children. I have no power to do that. There is nothing I can do to take this all away. So praying is the only answer. And when God calls me to my knees, I will do it.
Our prayer requests: Complete healing for Noah. That his cancer will be cured and never return. That he will learn to cope with all the procedures yet to come. That the side effects of the chemo will be non existant. Prayer for Coltan. That when they do the CT scan, they find only healthy little lungs with no cysts, no malformations, and that cancer will never invade his body. For Holly. She feels the stress too in her own way.
Melissa
Its more now too because Coltan will have to have a CT scan for is malformed lung. The doctors called today and told us they changed their minds and that Coltan needs it done within a month. He will be sedated, have a breathing tube inserted and have them breathe for him. Then in recovery for awhile. Its all so overwhelming. To look at my children and see them go through these procedures can be too much to take in some days. Today is that day where I feel very done with it all. I just want healthy children. I don't want to take them to the hospital anymore. I want to know that they will be just fine.
There are just days when it all feels too much. Today is a day like that. But I have no choice. I can't hide under my blankets and sleep away the day. I can't go to the mall and get lost for awhile. I have three children that all need me. But some days that's what I feel like doing. Disappear for a bit. Go to the store and not run into someone I know. Hide out until things settle.
So if I can't do those things, I then will pray. It sounds so like the 'right' thing to do. Or what everyone tells you to do. But truthfully, it the ONLY thing to do. I can't heal my children. I have no power to do that. There is nothing I can do to take this all away. So praying is the only answer. And when God calls me to my knees, I will do it.
Our prayer requests: Complete healing for Noah. That his cancer will be cured and never return. That he will learn to cope with all the procedures yet to come. That the side effects of the chemo will be non existant. Prayer for Coltan. That when they do the CT scan, they find only healthy little lungs with no cysts, no malformations, and that cancer will never invade his body. For Holly. She feels the stress too in her own way.
Melissa
Monday, October 22, 2012
Yes its been awhile
Its been almost a month since I posted anything. I think because its been a very good month. It feels almost normal, like how it used to be before Noah had cancer. He is doing so well. He has been going for chemo at clinic every 10 days. He gets 2 different kinds of chemo into his port. He freaked out a bit the first time because the numbing agent wasn't on long enough and he felt the poke. He freaked out the second time because he was afraid he would feel it, but we left the emla cream on for longer and he didn't feel a thing. So, by the third time he did so well. We go again tomorrow, Oct 23 and that will be the last time for this round.
The nurse and the hospital school teacher came to visit Noah's class and spoke to them about leukemia. I think it was well received. You could see that Noah was so excited to have her there (he really likes her), and you could see it made him feel special. The rest of the school week went really well. He didn't ask to come home at all, and went every morning without a fight. He said some of the boys played with him at recess and it sounds like things are going better.
Another 'normal' thing that has occurred is that Noah started hockey this month. He had his first practice last Thursday and loved it. You could tell he was tired, but he lasted the entire hour! He has practice again tonight and is really looking forward to it. The coach and his wife are very understanding and willing to help make this an enjoyable experience for Noah. So wonderful!
The next round of chemo starts the first week into November. I am nervous for it. He will be on the steroids again, like month one. In a way, it feels like Noah is cured. And technically he is. He is considered to be in remission right now. But because leukemia can hide, and is terribly resistant, they have to treat it for 3 - 3 1/2 years. And they have to do different combinations of drugs and timing to make sure they get it all. Steroids is a big part of it. I am afraid of the eating habits. Noah ate a full meal every 20 minutes during the first month, and gained 20 lbs. They said the weight gain may not be as severe, because he will be on the meds one week, then off one week, then on one week. But the eating will be there, and in the night. The restless sleeping, and the moodiness. Please pray that Noah will be the exception.That he wont experience these side effects like they expect him to. That he will get through this month like he has this last month, and be well.
I think alot lately about cancer. It's everywhere, and it touches everyone in some way. I asked God why this is and He hasn't answered me. Maybe He never will, maybe its not for us to know. But it bothers me. It's a horrible disease that can devour a body so quickly. Why is this so? It makes me so sad to think of all the heartache this disease has caused people. I would ask for prayer for a cure, but I believe there is a cure already. So why isn't God allowing this to happen? Just some questions rolling around in my brain. Not that I am blaming Him. Just thinking out loud.
With this next round of chemo, we most likely will see Noah lose his hair. He is very worried about this and says he will not go to school if it happens. Even though the nurse already told the class it would happen and its totally normal. He is frightened by it. Pray that he will cope well when that happens. Better yet, pray he doesn't lose his hair at all.
Prayer Requests: Complete healing for Noah. That his cancer will be cured and never return. That he will not get any infections that could cause him to get sick and be hospitalized, or even put his life at risk. That the side effects will be non existant. That he will feel normal and well and energized and happy.
Thank you for your prayer. I believe that is why Noah is doing so well. Because we asked for it in the name of Jesus and have received it.
Melissa
The nurse and the hospital school teacher came to visit Noah's class and spoke to them about leukemia. I think it was well received. You could see that Noah was so excited to have her there (he really likes her), and you could see it made him feel special. The rest of the school week went really well. He didn't ask to come home at all, and went every morning without a fight. He said some of the boys played with him at recess and it sounds like things are going better.
Another 'normal' thing that has occurred is that Noah started hockey this month. He had his first practice last Thursday and loved it. You could tell he was tired, but he lasted the entire hour! He has practice again tonight and is really looking forward to it. The coach and his wife are very understanding and willing to help make this an enjoyable experience for Noah. So wonderful!
The next round of chemo starts the first week into November. I am nervous for it. He will be on the steroids again, like month one. In a way, it feels like Noah is cured. And technically he is. He is considered to be in remission right now. But because leukemia can hide, and is terribly resistant, they have to treat it for 3 - 3 1/2 years. And they have to do different combinations of drugs and timing to make sure they get it all. Steroids is a big part of it. I am afraid of the eating habits. Noah ate a full meal every 20 minutes during the first month, and gained 20 lbs. They said the weight gain may not be as severe, because he will be on the meds one week, then off one week, then on one week. But the eating will be there, and in the night. The restless sleeping, and the moodiness. Please pray that Noah will be the exception.That he wont experience these side effects like they expect him to. That he will get through this month like he has this last month, and be well.
I think alot lately about cancer. It's everywhere, and it touches everyone in some way. I asked God why this is and He hasn't answered me. Maybe He never will, maybe its not for us to know. But it bothers me. It's a horrible disease that can devour a body so quickly. Why is this so? It makes me so sad to think of all the heartache this disease has caused people. I would ask for prayer for a cure, but I believe there is a cure already. So why isn't God allowing this to happen? Just some questions rolling around in my brain. Not that I am blaming Him. Just thinking out loud.
With this next round of chemo, we most likely will see Noah lose his hair. He is very worried about this and says he will not go to school if it happens. Even though the nurse already told the class it would happen and its totally normal. He is frightened by it. Pray that he will cope well when that happens. Better yet, pray he doesn't lose his hair at all.
Prayer Requests: Complete healing for Noah. That his cancer will be cured and never return. That he will not get any infections that could cause him to get sick and be hospitalized, or even put his life at risk. That the side effects will be non existant. That he will feel normal and well and energized and happy.
Thank you for your prayer. I believe that is why Noah is doing so well. Because we asked for it in the name of Jesus and have received it.
Melissa
Friday, October 5, 2012
School
Noah is having a really hard time at school. He came home today at lunch because he said his port was bothering him, however I have my doubts. He has been fighting going all last week and all this week. This morning as we listened to the radio to see if school was cancelled, he cried when he heard it wasn't. He is feeling incredibly alone at school and having a hard time finding kids that want to play with him. As a mom, this breaks my heart. As if cancer wasn't enough. Now he has to struggle with friends. He is in a new school this year so that doesn't help things very much, and doesn't feel comfortable playing football with the boys that he did know from before. He feels afraid that he will get hurt, and feels like he can't keep up with them. He gets tired easily now. He says that he asks them to play but they don't. This is so hard to hear.
Its so hard to see. I wish that I could take away all these hardships from him. I just want to make life as easy as I can for him through this hard time of chemo and all that goes with it. But I can't. I feel like there is nothing that I can do. I can't make kids play with him. I can't make them not make fun of him. He has been called a few names, and said that one boy even laughed at him when he found out he had cancer. I know that they are kids, but it makes me so angry to hear that my boy is being laughed at and made fun of. It's heartbreaking.
There are times when I just want to keep him home, and teach him myself. Times where I want to treat him like a kid who is dying and want him to be right next to me all the time. To protect him from ignorant and mean kids. To spend every moment with him and make sure he is happy and not feeling sad. I wish I knew what to do. I try to tell him to ask different boys to play, or to get a teacher to help him find his best friend in a different grade. But it seems like nothing is working.
So he is home this afternoon, against my better judgment (I guess). It's really hard for me. Next week he will miss most of the week because of Thanksgiving, and we have to travel to Winnipeg twice for chemo, and the other day he will miss half a day for blood work here in town. I just don't want him to slip behind the other kids and not be at the same level that they are with being able to attend school all the time. I don't know how to keep him at the same pace as all the rest.
Here we are trying to figure out our life with a child with cancer, trying to be normal. But it's so obvious that we are not. We are not normal. And it's hard to figure out how to make it all work. I just want him to be happy. To be the happy boy that he was last year, that loved going to school, was the class clown, had lots of friends and had fun.
Now he is happy when he gets to miss school and go for chemo. There is something that just isn't right about that.
Please pray for Noah to adjust better to school. To find friends. This is so different for him, he has never had a problem with friends. Pray for Chris and I that we will know how to respond when he fights and cries about school. Pray for the teachers that they will know how to handle his issues as well.
Thank you all so much,
Melissa
Its so hard to see. I wish that I could take away all these hardships from him. I just want to make life as easy as I can for him through this hard time of chemo and all that goes with it. But I can't. I feel like there is nothing that I can do. I can't make kids play with him. I can't make them not make fun of him. He has been called a few names, and said that one boy even laughed at him when he found out he had cancer. I know that they are kids, but it makes me so angry to hear that my boy is being laughed at and made fun of. It's heartbreaking.
There are times when I just want to keep him home, and teach him myself. Times where I want to treat him like a kid who is dying and want him to be right next to me all the time. To protect him from ignorant and mean kids. To spend every moment with him and make sure he is happy and not feeling sad. I wish I knew what to do. I try to tell him to ask different boys to play, or to get a teacher to help him find his best friend in a different grade. But it seems like nothing is working.
So he is home this afternoon, against my better judgment (I guess). It's really hard for me. Next week he will miss most of the week because of Thanksgiving, and we have to travel to Winnipeg twice for chemo, and the other day he will miss half a day for blood work here in town. I just don't want him to slip behind the other kids and not be at the same level that they are with being able to attend school all the time. I don't know how to keep him at the same pace as all the rest.
Here we are trying to figure out our life with a child with cancer, trying to be normal. But it's so obvious that we are not. We are not normal. And it's hard to figure out how to make it all work. I just want him to be happy. To be the happy boy that he was last year, that loved going to school, was the class clown, had lots of friends and had fun.
Now he is happy when he gets to miss school and go for chemo. There is something that just isn't right about that.
Please pray for Noah to adjust better to school. To find friends. This is so different for him, he has never had a problem with friends. Pray for Chris and I that we will know how to respond when he fights and cries about school. Pray for the teachers that they will know how to handle his issues as well.
Thank you all so much,
Melissa
Wednesday, September 26, 2012
A Summers End.
Well, September is almost over, and that means so is summer. On that scary fourth of July evening I believed it was a summer lost. But, as it turned out the Lord gave us many new and great summer memories this year. I am so thankful for the couple camping trips we got in this year, and so glad that the kids were able to enjoy at least a bit of what our usual summer looks like.
It feels like things are eerily normal. Kids are fighting, Noah is in school, Holly in preschool. We are doing most of our normal activities, going to church and so on. It feels good but different in a way that I can't explain. Maybe it's that new normal that we have been trying to find for the last 2 1/2 months. This round of chemo is different too. I don't have to give him any meds at home except on the weekends. And that feels nice, but so different than what we had come to know. Now Noah is going for chemo IV every 10 days. So this week we didn't even have to drive into the city, which also felt very strange. It feels like I am managing better. I am able to cook and bake (not that I need to, our freezer is still FULL!) but as a friend of mine who is going through a cancer diagnosis in one of her children as well said; it was just nice to feel normal and cook for my family again. And it's true. It feels nice to do things that I did before Noah had cancer. It will feel so nice when we get to that place where we can be a help to others in need. The love and grace and generosity that have been shown to us has inspired me to do so for others. I look forward to that.
This time of year is my favorite time of year. I love the fall. It's this time of year that makes me think of my grandma who will be gone 4 years in January. I think of her for several reasons. She was a canner, and I remember the way her house smelled of vinegar and pickled beets and cucs. I love that smell and I had to can some beets this year just so I could smell that vinagery smell and think of her. She had cancer. It has been hard to explain to Noah and Holly about why she died and why we believe that Noah will not die from cancer. But it just reminds me of how the Lord places people and different experiences in our lives for His purpose. Grandma taught me many things while she walked this earth, and she continues to while in Heaven. God has given me amazing people in my life, all for purposes that I can't know until sometimes they are gone, or we walk a path that is so very unfamiliar.
Yes, I feel better about the diagnosis. Is it our new normal that we are getting used to, or is it the Lord working in my life, answering prayer, revealing Himself and showing me what grace and mercy is like.
Prayer requests: pray that Noah's leukemia will be completely healed and never ever return. Pray that he does well in school and wants to go (he had a bad day today). Pray that his body handles this round of chemo well without the bad side effects. Pray that Holly can deal well with our changing lifestyle, and adjust to it. Coltan is going for a CT scan soon, pray that his lung is completely healed and that he will not need surgery to remove the part that didn't develop properly.
Thank you all again for all your support,
Melissa
It feels like things are eerily normal. Kids are fighting, Noah is in school, Holly in preschool. We are doing most of our normal activities, going to church and so on. It feels good but different in a way that I can't explain. Maybe it's that new normal that we have been trying to find for the last 2 1/2 months. This round of chemo is different too. I don't have to give him any meds at home except on the weekends. And that feels nice, but so different than what we had come to know. Now Noah is going for chemo IV every 10 days. So this week we didn't even have to drive into the city, which also felt very strange. It feels like I am managing better. I am able to cook and bake (not that I need to, our freezer is still FULL!) but as a friend of mine who is going through a cancer diagnosis in one of her children as well said; it was just nice to feel normal and cook for my family again. And it's true. It feels nice to do things that I did before Noah had cancer. It will feel so nice when we get to that place where we can be a help to others in need. The love and grace and generosity that have been shown to us has inspired me to do so for others. I look forward to that.
This time of year is my favorite time of year. I love the fall. It's this time of year that makes me think of my grandma who will be gone 4 years in January. I think of her for several reasons. She was a canner, and I remember the way her house smelled of vinegar and pickled beets and cucs. I love that smell and I had to can some beets this year just so I could smell that vinagery smell and think of her. She had cancer. It has been hard to explain to Noah and Holly about why she died and why we believe that Noah will not die from cancer. But it just reminds me of how the Lord places people and different experiences in our lives for His purpose. Grandma taught me many things while she walked this earth, and she continues to while in Heaven. God has given me amazing people in my life, all for purposes that I can't know until sometimes they are gone, or we walk a path that is so very unfamiliar.
Yes, I feel better about the diagnosis. Is it our new normal that we are getting used to, or is it the Lord working in my life, answering prayer, revealing Himself and showing me what grace and mercy is like.
Prayer requests: pray that Noah's leukemia will be completely healed and never ever return. Pray that he does well in school and wants to go (he had a bad day today). Pray that his body handles this round of chemo well without the bad side effects. Pray that Holly can deal well with our changing lifestyle, and adjust to it. Coltan is going for a CT scan soon, pray that his lung is completely healed and that he will not need surgery to remove the part that didn't develop properly.
Thank you all again for all your support,
Melissa
Monday, September 17, 2012
Port A+
Well, week one with a new port could not have gone better. Noah did so well during surgery and recovery was so much better this time. He was already back to school by Wednesday afternoon and by Thursday and Friday he stayed the entire day. He is feeling good, had a few bumps into on the bus, but overall, really good. He touches it and says it feels like there is a little ball in his chest. So, I tell him 'don't touch it!'. He is my child that cannot leave anything alone. He likes to pick at stuff until it breaks, so let's hope this new port doesn't fall victim to that too!
So far we really havn't seen any side effects from the new round of chemo started last Tuesday. He complains a bit of a sore throat so hopefully that's not the sores starting. We go again on Friday Sept 21 for his next chemo treatment.
We are still seeing some negative feelings that he has towards Holly, and that's hard to deal with. He has also been disobedient for Chris and I and that's also hard. It feels different now to punish him, yet we know that we need to.
Again this week we have felt the kindness of a stranger. It is absolutely unbelievable how we have been supported. It's so overwhelming and it just brings me to tears thinking of it. I have a little more hope that I will be able to pay it forward in the future now. Until now, it was hard for me to visualize what life was going to be like. I felt so incompetent for the first couple months. Now, I feel like I am starting to get back to myself again. Starting to feel our way around what life with cancer is like. For now anyway. I know that things can change very quickly, especially with chemo. So, we take each day as it comes. I don't like to say one day at a time. That phrase is starting to bother me. It's not easy to take things one day at a time. I don't know, maybe it's just my sleep deprived brain talking crazy again.
Prayer requests: Complete healing for Noah, that he will be cured of this cancer and it will never return. That he will be nicer to Holly and more respectful of Chris and I. That I will be more patient. That the side effects will be so minimal that we don't even notice them. That Noah will be able to attend as much school as possible and able to play hockey this winter. That Holly will do well at pre-school and not feel too left out in all this. That Coltan will continue to be my sweet bestest little baby:)
Thank you all
Melissa
So far we really havn't seen any side effects from the new round of chemo started last Tuesday. He complains a bit of a sore throat so hopefully that's not the sores starting. We go again on Friday Sept 21 for his next chemo treatment.
We are still seeing some negative feelings that he has towards Holly, and that's hard to deal with. He has also been disobedient for Chris and I and that's also hard. It feels different now to punish him, yet we know that we need to.
Again this week we have felt the kindness of a stranger. It is absolutely unbelievable how we have been supported. It's so overwhelming and it just brings me to tears thinking of it. I have a little more hope that I will be able to pay it forward in the future now. Until now, it was hard for me to visualize what life was going to be like. I felt so incompetent for the first couple months. Now, I feel like I am starting to get back to myself again. Starting to feel our way around what life with cancer is like. For now anyway. I know that things can change very quickly, especially with chemo. So, we take each day as it comes. I don't like to say one day at a time. That phrase is starting to bother me. It's not easy to take things one day at a time. I don't know, maybe it's just my sleep deprived brain talking crazy again.
Prayer requests: Complete healing for Noah, that he will be cured of this cancer and it will never return. That he will be nicer to Holly and more respectful of Chris and I. That I will be more patient. That the side effects will be so minimal that we don't even notice them. That Noah will be able to attend as much school as possible and able to play hockey this winter. That Holly will do well at pre-school and not feel too left out in all this. That Coltan will continue to be my sweet bestest little baby:)
Thank you all
Melissa
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