I had to call Nathan's Oncologist at 2 am Monday morning. Beginning on Saturday Nathan started acting really fussy and it reached a peak Monday morning. He woke up inconsolable , he had a mouth sore which is a common side effect from his chemo but in addition to that he just seemed uncomfortable so I decided to call. He didn't have a fever which was a good thing so I gave him something for pain and rocked him back to sleep after talking to his Oncologist.
All day Monday I was on the phone back and forth with the Oncology team giving "status updates" on Nathan's progress. My parents had come up to help me clean. My house is horribly behind...we spent all day cleaning just the kitchen. During the time we were cleaning I noticed Nathan had a rash on his face and showed it to my parents and my friend who was over, a rash could possibly symbolize the onset of an infection. Since he didn't have a fever the doctors said it was ok for him to wait and come in today. So at 9 am this morning I took him to in to see his doctor.
Thankfully when he woke up this morning the rash was better and his voice is starting to come back which is a good thing. He did however have a low grade fever when we checked into the doctors office but it wasn't enough that he had to be hospitalized. We had to keep an eye on him and keep checking it periodically, and now he's asleep and it hasn't gone up, and I'm praying it doesn't go up tonight or he will have to be hospitalized (he'll be staying overnight again this week).
Dear Lord,
Please take this cancer from Nathan and give us strength.
In Jesus name
Amen
Tuesday, April 20, 2010
Sunday, April 18, 2010
I Just Want to Be Happy
Sometimes I truthfully wonder if life will ever be the same. Cancer is such an emotional roller coaster and I don't know if I'm really happy, I've just learned to cope. I hope happiness comes back soon. My Aunt who lost her son to cancer said that joy will come again one day. I think I may put in a call to her for more encouragement.
The problem is that the days are so unpredictable. One day Nathan's feeling great and then the next he's sick again. Nothing can be planned, really. I can say I'll meet someone somewhere and then wake up the next morning to a sick child and I just can't.
I have a wonderful little girl who'll be two next month and I have to remember to get her away daily for one on one time. Her vocabulary is exploding and it's really fun to talk to her and she brings me a ton of joy. In all of the sadness it's hard to find time to laugh and just have fun, but there's a ton of laughter when we're together. I truly feel that cancer has robbed Sam and me of just being able to enjoy our children, but we try hard to make all of our time together enjoyable.
A date night for Sam and me isn't in the near future. Nathan isn't verbal so we can't really leave him. It's too touch and go, we don't know the effect the radiation has had on his throat but he doesn't have a voice at all, he's forever congested and if you don't understand his gestures it can be a huge problem because if he's sick and need medical attention, you'll have to understand him to be able to help him. I know a time will come when he can be left for a little while in someone's care but now isn't the time.
Cancer just stinks. It's like a nightmare, we want to escape it so bad but it's always in our face. There's days when he's laughing and just so happy and it gives us so much hope and you go to sleep happy, then at 4:00 am he wakes up crying inconsolable and then is back sick again for several days. He doesn't seem to be at peace himself and though we're honest with him we don't discuss all the nitty gritty details with him. His hospital stay is coming up and he got really sick from the chemo the last time and since he's not well again, I'm guessing he'll get sick again.
I saw on the news that scientist are coming out with new ideas on how to cure cancer. Of course these ideas have to go through so much before they become approved and it's frustrating to watch because I want them implemented now. If they're that good, then I want them implemented as soon as possible so Nathan can benefit from them.
I've been staying up late again because my mind is just so full. It's weird because it's not that I can't sleep, if I chose to I could go to bed at 10 and sleep all night. But then all of my dreams lately center around hospital related stuff. They're not really morbid or anything but I'm still sick of them, so I just choose to stay up. I read Psalms every night before bed and Sam and I pray together and then I pull out my phone and watch happy movies until my eyes close on their own.
I'm just so sick of seeing Nathan so sick. I'm frustrated that I can't alleviate his pain. I do feel angry at times still(this is one of those times if you can't tell) and I take it to God. I just want Nathan's pain to stop. I want this year to end already. I want Nathan to be well and happy. We all feel robbed! I so wanted to be a mother and enjoy motherhood and I don't understand why God allowed this to happen and more important why did it have to happen to Nathan and not me.
Sam cut Nathan's hair for the last time in February, it was starting to come out so we decided to cut it instead of watching it fall out. And we saved it, I truthfully forgot to save his baby hair from his first haircut but we did save his hair in February and I came across the bag of hair today and I just pulled it out and held it in my hand. It's was so thick, I just can't believe the majority of it is gone and won't be back for a long time, it just made me sad I guess.
Nathan was also diagnosed with having Apraxia which is another big problem, though not as big as cancer. I debated whether I was going to talk about the Apraxia on this blog, truthfully I don't feel like discussing it in conversation right now, but it's not a fun diagnosis either, though after already having a cancer diagnosis we took this diagnosis pretty well.
It's a lot going on in this household and I truthfully don't look forward to a lot anymore. I just want to hear cancer free, that's all I'm waiting to hear is cancer free and pray that one day Nathan himself will be able to stand in front of you and give a powerful testimony as to what God can do. I pray that he'll speak eloquently when that day comes. I draw a lot of encouragement from Exodus 4:10-11, remember when God spoke to Moses and Moses said to Him:
Well I'm going to go start my night routine, it felt really good to write tonight. I know this post was kind of all over the place, I just kinda wrote my thoughts as they are in my head right now.
God Bless
The problem is that the days are so unpredictable. One day Nathan's feeling great and then the next he's sick again. Nothing can be planned, really. I can say I'll meet someone somewhere and then wake up the next morning to a sick child and I just can't.
I have a wonderful little girl who'll be two next month and I have to remember to get her away daily for one on one time. Her vocabulary is exploding and it's really fun to talk to her and she brings me a ton of joy. In all of the sadness it's hard to find time to laugh and just have fun, but there's a ton of laughter when we're together. I truly feel that cancer has robbed Sam and me of just being able to enjoy our children, but we try hard to make all of our time together enjoyable.
A date night for Sam and me isn't in the near future. Nathan isn't verbal so we can't really leave him. It's too touch and go, we don't know the effect the radiation has had on his throat but he doesn't have a voice at all, he's forever congested and if you don't understand his gestures it can be a huge problem because if he's sick and need medical attention, you'll have to understand him to be able to help him. I know a time will come when he can be left for a little while in someone's care but now isn't the time.
Cancer just stinks. It's like a nightmare, we want to escape it so bad but it's always in our face. There's days when he's laughing and just so happy and it gives us so much hope and you go to sleep happy, then at 4:00 am he wakes up crying inconsolable and then is back sick again for several days. He doesn't seem to be at peace himself and though we're honest with him we don't discuss all the nitty gritty details with him. His hospital stay is coming up and he got really sick from the chemo the last time and since he's not well again, I'm guessing he'll get sick again.
I saw on the news that scientist are coming out with new ideas on how to cure cancer. Of course these ideas have to go through so much before they become approved and it's frustrating to watch because I want them implemented now. If they're that good, then I want them implemented as soon as possible so Nathan can benefit from them.
I've been staying up late again because my mind is just so full. It's weird because it's not that I can't sleep, if I chose to I could go to bed at 10 and sleep all night. But then all of my dreams lately center around hospital related stuff. They're not really morbid or anything but I'm still sick of them, so I just choose to stay up. I read Psalms every night before bed and Sam and I pray together and then I pull out my phone and watch happy movies until my eyes close on their own.
I'm just so sick of seeing Nathan so sick. I'm frustrated that I can't alleviate his pain. I do feel angry at times still(this is one of those times if you can't tell) and I take it to God. I just want Nathan's pain to stop. I want this year to end already. I want Nathan to be well and happy. We all feel robbed! I so wanted to be a mother and enjoy motherhood and I don't understand why God allowed this to happen and more important why did it have to happen to Nathan and not me.
Sam cut Nathan's hair for the last time in February, it was starting to come out so we decided to cut it instead of watching it fall out. And we saved it, I truthfully forgot to save his baby hair from his first haircut but we did save his hair in February and I came across the bag of hair today and I just pulled it out and held it in my hand. It's was so thick, I just can't believe the majority of it is gone and won't be back for a long time, it just made me sad I guess.
Nathan was also diagnosed with having Apraxia which is another big problem, though not as big as cancer. I debated whether I was going to talk about the Apraxia on this blog, truthfully I don't feel like discussing it in conversation right now, but it's not a fun diagnosis either, though after already having a cancer diagnosis we took this diagnosis pretty well.
It's a lot going on in this household and I truthfully don't look forward to a lot anymore. I just want to hear cancer free, that's all I'm waiting to hear is cancer free and pray that one day Nathan himself will be able to stand in front of you and give a powerful testimony as to what God can do. I pray that he'll speak eloquently when that day comes. I draw a lot of encouragement from Exodus 4:10-11, remember when God spoke to Moses and Moses said to Him:
"...O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.
And God replied11 ..."Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD ?
Well I'm going to go start my night routine, it felt really good to write tonight. I know this post was kind of all over the place, I just kinda wrote my thoughts as they are in my head right now.
God Bless
Friday, April 16, 2010
Nathan's been laughing
Yes you read that title correctly!!!!! We'd gotten a few smiles along the way but truthfully we haven't heard Nathan laugh in over a month! But that all changed this week!
Monday, was Nathan's last day on the steroid he'd been taking. In addition to all of the other side effects I'd mentioned before, another steroid side effect was intense mood swings. His child life specialist described it as feeling like you have PMS literally around the clock (yeah not fun ladies). But anyway they'd began weening him off of it and Monday was the last day and on Tuesday his demeanor started changing. He actually started playing again!!!!!! Before Nathan was diagnosed with cancer him and Peyton would go into the toy box and pull everything out, well it happened today for the first time in a LONG time. I didn't even mind cleaning up the mess they made.
Then came the laughing!!!! I mean laughing so hard he was doubled over! We haven't heard that sound coming from him in quite awhile. He's been smiling almost constantly and playing with Peyton around the clock. Today they were on the floor next to each other laughing hysterically!!!
He's also started sleeping better. Sam and I were getting up with him 5 to 6 times a night. This morning when we woke up we asked each other how many times the other got up and the answer was just once (we'd both gotten up to tend to him). But we were blown away that it was the only time he called to us. Sometimes one of us is so tired we don't hear the other get up so we don't always know until we count it up in the morning and yes, we only got up with him once last night so he's sleeping better!!!!!!
When he went for his chemo yesterday the doctors and nurses were also happy to see him in such a good mood, because he's been down for awhile now.
I'm also glad to report that he's not on any pain medication right now!!! Yes that's right! For now the pain medications have stopped.
Now next week the Ear Nose Throat (ENT) team will have a look down his throat again. Unfortunately Nathan still doesn't have a voice, everything that comes out of him is extremely strained and very high pitched so they have to check and see what damage the radiation possibly did to his vocal cords. He's laughing and it's just the most pleasant sound to us no matter how it comes out but we want to hear his voice getting better so the ENT will have a look this week.
Dear Lord
THANK YOU!!!!!!! Thank you so much for this week. Lord thank you for Nathan's laughter and the joy in him. He seems happy this week and we're so thankful for that.
Thank you so much that he's able to play and even run!!!! Lord his smile is the most beautiful sight to us right now. Thank you for the amount of time him and Peyton are spending with each other, just running and laughing out loud.
Lord I know we got a lot ahead still, but I'm so very thankful for these intermittent times of happiness that you still allow us to have!!!!
In Jesus Name
Amen
Monday, was Nathan's last day on the steroid he'd been taking. In addition to all of the other side effects I'd mentioned before, another steroid side effect was intense mood swings. His child life specialist described it as feeling like you have PMS literally around the clock (yeah not fun ladies). But anyway they'd began weening him off of it and Monday was the last day and on Tuesday his demeanor started changing. He actually started playing again!!!!!! Before Nathan was diagnosed with cancer him and Peyton would go into the toy box and pull everything out, well it happened today for the first time in a LONG time. I didn't even mind cleaning up the mess they made.
Then came the laughing!!!! I mean laughing so hard he was doubled over! We haven't heard that sound coming from him in quite awhile. He's been smiling almost constantly and playing with Peyton around the clock. Today they were on the floor next to each other laughing hysterically!!!
He's also started sleeping better. Sam and I were getting up with him 5 to 6 times a night. This morning when we woke up we asked each other how many times the other got up and the answer was just once (we'd both gotten up to tend to him). But we were blown away that it was the only time he called to us. Sometimes one of us is so tired we don't hear the other get up so we don't always know until we count it up in the morning and yes, we only got up with him once last night so he's sleeping better!!!!!!
When he went for his chemo yesterday the doctors and nurses were also happy to see him in such a good mood, because he's been down for awhile now.
I'm also glad to report that he's not on any pain medication right now!!! Yes that's right! For now the pain medications have stopped.
Now next week the Ear Nose Throat (ENT) team will have a look down his throat again. Unfortunately Nathan still doesn't have a voice, everything that comes out of him is extremely strained and very high pitched so they have to check and see what damage the radiation possibly did to his vocal cords. He's laughing and it's just the most pleasant sound to us no matter how it comes out but we want to hear his voice getting better so the ENT will have a look this week.
Dear Lord
THANK YOU!!!!!!! Thank you so much for this week. Lord thank you for Nathan's laughter and the joy in him. He seems happy this week and we're so thankful for that.
Thank you so much that he's able to play and even run!!!! Lord his smile is the most beautiful sight to us right now. Thank you for the amount of time him and Peyton are spending with each other, just running and laughing out loud.
Lord I know we got a lot ahead still, but I'm so very thankful for these intermittent times of happiness that you still allow us to have!!!!
In Jesus Name
Amen
Wendi
Sometimes the compassion in strangers really amazes me. Nathan had speech therapy on Wednesday and when we came out there was another mom and her son waiting for Nathan's speech therapist. So the little boy went back for his appointment and I was lingering at the front desk filling out paper work and the mother asked me if Nathan was healing from surgery. Now let me back up a little I think I mentioned in previous posts that Nathan has obvious facial burns from his radiation. Unfortunately when we go out in public people usually gawk at him but never ask what happened. At first it was really hard to take this reaction and at times it still is but I'd made up my mind that if someone was bold enough to ask I was going to tell them, but truthfully I never thought anyone would ask.
So anyway this mom asked and I told her no and explained that his burns were from radiation treatment and he has cancer. Her reaction caught me off guard though. I'm used to the general reaction of "I'm sorry to hear that" or "I'll pray for you" but this lady paused and tears just started streaming down her face and she called Nathan over to her and looked at him face to face and said "Nathan buddy I'm going to be praying for you." I was blown away at the level of compassion this mom felt for Nathan, a total stranger to her. She then asked how I was holding up and I could hear the genuine concern in her voice. So I told her the entire story and she listened and complimented Nathan on being such a strong little boy and she told me over and over how much she'd be praying.
I talked to her for quite awhile. Her name is Wendi and she has a 13 year old daughter who is really sick right now as well. She told me the name of the disorder (it's psychological in nature) and I apologize for not being able to remember it but she said it causes her to have convulsions and seizures. At times she blacks out and at other times she literally destroys the home. Wendi told me "it's nothing compared to cancer" but I could see the hurt in her face and in the way she reacted to Nathan's cancer diagnosis and it's huge. My heart goes out to her, I don't like comparing diseases and I tell people all the time not to do that, when something is wrong with your child it hurts, bad. This mom is really going through a lot and she and her family are really hurting. She said she's had to take a leave of absence to take care of her daughter and it's taking a huge toll on the entire family (her and her husband have 3 children). Her child has told her several times that she just wants to die to take all of the pain away (she has a lot of physical pain as well).
Now this mom told me this after awhile of talking. Wendi's main concern was for Nathan and her tears were because she hated hearing of a chronic diagnosis for such a young child and as we got talking she shared with me about her little girl. We talked so long that Nathan and I stayed the duration of her son's appointment. She then told her son "this is Nathan and we're going to pray for him."
Dear Lord,
I come to you tonight praying for Wendi. Lord I don't know what this mom is going through. Lord I can't imagine what her family is going through because I know it has to be affecting the entire family.
Lord please heal this child, remove the physical pain and take away the seizures, Lord please stop her from blacking out and lashing out. Lord to hear a 13 year old child desires death just breaks my heart. Lord I don't understand psychological problems but you do. Lord remove whatever it is inside of her that is causing her to do this.
Lord restore peace in Wendi's home. I know she mentioned prayer but now a days that doesn't always mean the person is praying to you or is a believer in you. I don't want to assume, so Lord I pray for her salvation. I'll be running into her every week due to our childrens' appointments, give me the right words to say - or at least I assume I will, forgive me for not questioning when I had the opportunity since next week isn't promised.
Lord, Wendi is hurting, it's so evident that this is really hurting her to see her little girl go through such a rough period and she said she feels helpless. Lord please remove whatever it is that is ailing this child.
Lord I pray for Wendi's relationship with her husband and her other children please help them all be able to stick together.
Lord bring other people into her life who know you as well. Bring Christian doctors in her daughters life. Lord provide many opportunities for your Word to be heard by them.
Lord thank you for allowing me to meet her.
In Jesus Name
Amen
So anyway this mom asked and I told her no and explained that his burns were from radiation treatment and he has cancer. Her reaction caught me off guard though. I'm used to the general reaction of "I'm sorry to hear that" or "I'll pray for you" but this lady paused and tears just started streaming down her face and she called Nathan over to her and looked at him face to face and said "Nathan buddy I'm going to be praying for you." I was blown away at the level of compassion this mom felt for Nathan, a total stranger to her. She then asked how I was holding up and I could hear the genuine concern in her voice. So I told her the entire story and she listened and complimented Nathan on being such a strong little boy and she told me over and over how much she'd be praying.
I talked to her for quite awhile. Her name is Wendi and she has a 13 year old daughter who is really sick right now as well. She told me the name of the disorder (it's psychological in nature) and I apologize for not being able to remember it but she said it causes her to have convulsions and seizures. At times she blacks out and at other times she literally destroys the home. Wendi told me "it's nothing compared to cancer" but I could see the hurt in her face and in the way she reacted to Nathan's cancer diagnosis and it's huge. My heart goes out to her, I don't like comparing diseases and I tell people all the time not to do that, when something is wrong with your child it hurts, bad. This mom is really going through a lot and she and her family are really hurting. She said she's had to take a leave of absence to take care of her daughter and it's taking a huge toll on the entire family (her and her husband have 3 children). Her child has told her several times that she just wants to die to take all of the pain away (she has a lot of physical pain as well).
Now this mom told me this after awhile of talking. Wendi's main concern was for Nathan and her tears were because she hated hearing of a chronic diagnosis for such a young child and as we got talking she shared with me about her little girl. We talked so long that Nathan and I stayed the duration of her son's appointment. She then told her son "this is Nathan and we're going to pray for him."
Dear Lord,
I come to you tonight praying for Wendi. Lord I don't know what this mom is going through. Lord I can't imagine what her family is going through because I know it has to be affecting the entire family.
Lord please heal this child, remove the physical pain and take away the seizures, Lord please stop her from blacking out and lashing out. Lord to hear a 13 year old child desires death just breaks my heart. Lord I don't understand psychological problems but you do. Lord remove whatever it is inside of her that is causing her to do this.
Lord restore peace in Wendi's home. I know she mentioned prayer but now a days that doesn't always mean the person is praying to you or is a believer in you. I don't want to assume, so Lord I pray for her salvation. I'll be running into her every week due to our childrens' appointments, give me the right words to say - or at least I assume I will, forgive me for not questioning when I had the opportunity since next week isn't promised.
Lord, Wendi is hurting, it's so evident that this is really hurting her to see her little girl go through such a rough period and she said she feels helpless. Lord please remove whatever it is that is ailing this child.
Lord I pray for Wendi's relationship with her husband and her other children please help them all be able to stick together.
Lord bring other people into her life who know you as well. Bring Christian doctors in her daughters life. Lord provide many opportunities for your Word to be heard by them.
Lord thank you for allowing me to meet her.
In Jesus Name
Amen
Sunday, April 11, 2010
Really Quick
Hi! I just wanted to give everyone an update on Nathan.
He finished his radiation on April 1st!!!!!! Yay! Now he's continuing on with his chemo which will last 43 weeks total. He hasn't been feeling too well, just because his skin is still burned from the radiation and his throat is still sore so he's still on pain medication around the clock, but thankfully he's done with such a hard part of his treatment and he made it through without having an extended hospital stay. He's gained a ton of weight. He was put on a steroid for the swelling in his throat and one of the many side effects is that his appetite increased tremendously and as a result there's been significant weight gain. Plus there's swelling of the stomach and face anyway which is a side effect from his radiation, so couple that with the weight gain and I'll say those of you who know and haven't seen Nathan in awhile would see he obviously looks very different. But you know what I'm very thankful for the weight gain, we were concerned about a significant weight loss which was possible but instead he gained and I'm not mad about it and neither is Sam, just more for us to hold and cuddle :-). In the future he still stands a chance of losing weight so hopefully he's gained enough to buffer that.
In about a month he'll get his first scans since he's started treatment. They're going to do MRI's and CT scans to see how the cancer is responding to treatment. If you look at him the lump that was under his ear isn't as visible as it was when this was first discovered and his eye is moving a lot better now. I asked his doctor what to expect when looking at these scans. I wanted to know if there was a possibility that the scans could already show no signs of the cancer and he said there's a possibility of course but it's unlikely it'll show cancer free so soon, but it should show how the tumor is responding. Even if the scans didn't show any cancer they'd continue with the 43 weeks of chemo to be on the safe side.
For fun Nathan still enjoys watching the wonder pets and he's really into hot wheel cars right now. He gets tired a lot so we all spend a ton of time reading to him and Peyton. Our good friends dropped off food for us today and also bought him a pack of hot wheel cars and he smiled sooooo big and immediately started playing with them. Peyton even got a toy too which she loves and also Nathan was kind enough to let her have one of his cars!
Dear Lord
We just thank you for Nathan and Peyton. Nathan's been able to spend time outside due to the nice weather and even in the midst of pain we've been seeing a few smiles here and there. Thank you for Peyton who keeps Nathan moving. Thank you for the fact she's too young to understand. Thank you for her personality, she brings so much laughter into our household and we're just happy to have her here.
Lord we're still trusting you. Things aren't where we want them to be and I'm honestly still fearful of what you're will is in this situation but Lord we're going to keep seeking you and trusting you.
Lord hold up Nathan, please give him comfort and ease his pain. Help him to sleep soundly. Please remove any fear he may be feeling. Lord he wants to be able to play again, I know he wants to run and jump but he's just so tired. Lord I know the day is coming and we all can't wait to see him as energetic as he once was. But for right now I pray that you carry him through this. Sam, Peyton and I will be with him every step of this journey and we have such wonderful friends and family who are praying to and have come alongside us. But for those times he's alone in his room I just want him to be at peace. We don't know how much of this makes sense to him so I'm just asking for peace for him as he's going through.
Thank you for blessing us with him. I don't like this whole cancer thing you got him going through but even still I'm so glad you saw fit to bless us with such a wonderful little boy.
In Jesus Name
Amen
He finished his radiation on April 1st!!!!!! Yay! Now he's continuing on with his chemo which will last 43 weeks total. He hasn't been feeling too well, just because his skin is still burned from the radiation and his throat is still sore so he's still on pain medication around the clock, but thankfully he's done with such a hard part of his treatment and he made it through without having an extended hospital stay. He's gained a ton of weight. He was put on a steroid for the swelling in his throat and one of the many side effects is that his appetite increased tremendously and as a result there's been significant weight gain. Plus there's swelling of the stomach and face anyway which is a side effect from his radiation, so couple that with the weight gain and I'll say those of you who know and haven't seen Nathan in awhile would see he obviously looks very different. But you know what I'm very thankful for the weight gain, we were concerned about a significant weight loss which was possible but instead he gained and I'm not mad about it and neither is Sam, just more for us to hold and cuddle :-). In the future he still stands a chance of losing weight so hopefully he's gained enough to buffer that.
In about a month he'll get his first scans since he's started treatment. They're going to do MRI's and CT scans to see how the cancer is responding to treatment. If you look at him the lump that was under his ear isn't as visible as it was when this was first discovered and his eye is moving a lot better now. I asked his doctor what to expect when looking at these scans. I wanted to know if there was a possibility that the scans could already show no signs of the cancer and he said there's a possibility of course but it's unlikely it'll show cancer free so soon, but it should show how the tumor is responding. Even if the scans didn't show any cancer they'd continue with the 43 weeks of chemo to be on the safe side.
For fun Nathan still enjoys watching the wonder pets and he's really into hot wheel cars right now. He gets tired a lot so we all spend a ton of time reading to him and Peyton. Our good friends dropped off food for us today and also bought him a pack of hot wheel cars and he smiled sooooo big and immediately started playing with them. Peyton even got a toy too which she loves and also Nathan was kind enough to let her have one of his cars!
Dear Lord
We just thank you for Nathan and Peyton. Nathan's been able to spend time outside due to the nice weather and even in the midst of pain we've been seeing a few smiles here and there. Thank you for Peyton who keeps Nathan moving. Thank you for the fact she's too young to understand. Thank you for her personality, she brings so much laughter into our household and we're just happy to have her here.
Lord we're still trusting you. Things aren't where we want them to be and I'm honestly still fearful of what you're will is in this situation but Lord we're going to keep seeking you and trusting you.
Lord hold up Nathan, please give him comfort and ease his pain. Help him to sleep soundly. Please remove any fear he may be feeling. Lord he wants to be able to play again, I know he wants to run and jump but he's just so tired. Lord I know the day is coming and we all can't wait to see him as energetic as he once was. But for right now I pray that you carry him through this. Sam, Peyton and I will be with him every step of this journey and we have such wonderful friends and family who are praying to and have come alongside us. But for those times he's alone in his room I just want him to be at peace. We don't know how much of this makes sense to him so I'm just asking for peace for him as he's going through.
Thank you for blessing us with him. I don't like this whole cancer thing you got him going through but even still I'm so glad you saw fit to bless us with such a wonderful little boy.
In Jesus Name
Amen
Friday, April 9, 2010
I've Decided to Continue
I almost stopped blogging. I got really hurtful feedback on how I've been blogging and writing on facebook that literally almost made me stop.
Having to deal with cancer is one of the hardest things Sam and I have ever had to face and the person who gave me the feedback even questioned why I'd put my every thought out here for everyone to read. I've been told it's abrasive and no one knows how to deal with me. And truthfully after hearing that I almost stopped altogether. I prayed on it hard. I shut down my facebook account and I truly contemplated closing this blog as well. But I decided to pray on that before making a decision.
When I first started this blog my intention was only to talk about the good days. The days where Nathan was feeling good and Sam and I were in good spirits but then I decided that sugarcoating cancer isn't what I wanted to do. This blog isn't meant to insult anyone. I wish I could smile through this entire journey but I can't. Many families have come before me and dealt with childhood cancer and many will come after me.
I love the book of Psalms. If you read it you'll see the Psalmist crying out to God in ways that may seem unholy to some today. Some of the Psalmist even questioned where God was and why He was hiding from them. The Psalms are also full of praise and worship and it has become one of my favorite books of the Bible as I'm going through this with Nathan.
If you haven't been through what I'm going through or something similar then I don't expect you to know what I'm feeling, that would be dumb of me. This blog was created to tell you. Sam and I truly feel like we're in a nightmare and the hurt is beyond what we can describe. We definitely have good days and we have bad. To see our son whom we love so very much suffer is very very difficult and I do struggle. I've been told by the same person I should start thinking about others when I write. The point of this blog is to share not only Nathan's cancer story but to show everything that comes along with it. I want it to be real and it's for the people who'll come after Sam and I. It's for the next family who'll have a child diagnosed with cancer. I know the emotions that come with it. I know how it feels as a Christian to have my faith rattled and I want this out there for them when they start feeling this way, I want them to know that someone else felt that way to and they're not alone. Hopefully by that time we'll be where we can testify and they can read the journey, how raw and difficult it is, the ups and the downs and then get the conclusion at the end as to how God brought us out. Ever read the poem footprints, well for us it's like that, we know God is in the midst but at times it's just hard to feel His presence and if any other Christians ever feel this way they're not alone. Not only that but this blog is an outlet for me, when I'm feeling down, I write, I always have kept journals, but I decided to make this one public.
For those of you reading this who are going through something similar and for those of you who will be, I want you to know that it's ok to feel hurt. It's ok to cry, it's ok to be angry but try not to sin in that anger, and it's ok to cry out to God and above all tell Him exactly how you feel. When the emotions come upon you, tell Him.
For those of you watching someone go through a situation like this maybe this blog will give you insight on how to deal with them. When a person is told that their child has cancer it stops everything. The doctors tell you what the plan is, but even they can't tell you the outcome. It's not like having a cold and the doctor says: "take this and it should clear up in a few days." A parents love is usually deep for their children. Sam and I would give our lives in a heartbeat if it meant saving our children. It's a very hard thing to swallow, in an instant that parents life is turned upside down. There are times of laughter of course, but then there are other times where you literally feel like you're on the brink of depression. Then the treatments start and all the medications. All of the medical professionals are wonderful because even though they see cancer everyday, they're quick to tell you they don't have a clue how it'll feel going through it as a parent and the treatment you get at the hospital is top notch. But understand, if you can, how hard it is to get the diagnosis and then have to retell it over and over to family members and friends as they find out and want to know. We as parents know the intentions are good but still it's VERY hard for a parent to keep repeating the diagnosis over and over. Granted in a hospital situation they have to and you can do it. But outside the hospital it's harder because when you're dealing with the general public, they have no idea the emotions that go along with dealing with a child with cancer. Please try to be considerate of that parent. They may not want to repeat "what happened" over and over and they may not want to talk about the survival rate. We know that God is able, but we also know that truthfully our son could die and the reality of that is HARD to hear once and even harder to say over and over again.
What can you do? If anything just listen to what they have to say and let the parent give the amount of information they want to give and always, ALWAYS be willing to pray with that parent. Many people feel they have to offer something, then offer them prayer, or a shoulder to cry on, offer them laughter if the situation is appropriate for it. Offer them love, I remember a friend of ours called and just left a message on the machine saying nothing else but "I Love You." Don't get mad at them or take it personal if they go through a period where they don't return your calls right away. It's good to offer help but don't get mad if the person doesn't know what they want or need, truly it's a time when it's just hard to think straight, if you can cook then it's ok to drop off dinner or if you have something special God laid on your heart to do for them then do it. Send a card if you want but if you do anything just pray, pray and keep praying. Most parents are so caught up in what's going on with their kids they're not sitting around thinking "I'm mad that this person isn't calling etc." Truthfully all we want to hear is that our child is cancer free and we want the suffering to stop. Try to be patient with that person, when it seems they're hard to deal with and maybe they are but instead of getting angry with them why not pray for them. It could be a sign that they're hurting and it's definitely not a time to cut them down. Remember you're not there with them every night when they're waking up sometimes 4 times a night to deal with a sick child and this isn't just two weeks for a cold or a flu but EVERY SINGLE NIGHT for different lengths of time, you're not there when they have to rush that child to the ER at midnight, you're not there to see the side effects from the 14 medications that they're on, you're not there to see their little bodies left severely burned from radiation...I could go on and on...just realize you're not there, you don't see it. Be patient with them and if you have nothing positive to offer it's always ok to just say nothing.
Now in saying all of this I'm not saying constructive criticism may not be needed at times but I remember when I first visited the church where Sam and I are now members and our Pastor was preaching a sermon I'll never forget and it was called "Confronting in Love." It had me on the edge of my seat. If you're going to confront that person, please check your motive first. Pray about how you're going to confront them, because please remember they're hurting and the hurt is pretty much around the clock, they have up times of course but the hurt doesn't go away. So pray before you lash out. Ask God for guidance in what to say and also make sure you're close to that person and not just an associate. Maybe call and ask how their child or love one that's sick is doing before you confront see if you can help them in anyway. Sometimes what you may mistake as weirdness is really just hurt.
So the blogging is going to continue, I love my son and family so very much and I do want to share with you. I'm praying that in the end you get to celebrate with me Nathan's being cancer free and even if God takes Him I pray that in my writing you'll see God's hand in the midst and truthfully this account is going to help me. When I'm looking at the one set of footprints now I feel they're my own I can't wait to be able to look back realizing they were God's all along carrying our precious Nathan through this difficult journey. God Bless
Having to deal with cancer is one of the hardest things Sam and I have ever had to face and the person who gave me the feedback even questioned why I'd put my every thought out here for everyone to read. I've been told it's abrasive and no one knows how to deal with me. And truthfully after hearing that I almost stopped altogether. I prayed on it hard. I shut down my facebook account and I truly contemplated closing this blog as well. But I decided to pray on that before making a decision.
When I first started this blog my intention was only to talk about the good days. The days where Nathan was feeling good and Sam and I were in good spirits but then I decided that sugarcoating cancer isn't what I wanted to do. This blog isn't meant to insult anyone. I wish I could smile through this entire journey but I can't. Many families have come before me and dealt with childhood cancer and many will come after me.
I love the book of Psalms. If you read it you'll see the Psalmist crying out to God in ways that may seem unholy to some today. Some of the Psalmist even questioned where God was and why He was hiding from them. The Psalms are also full of praise and worship and it has become one of my favorite books of the Bible as I'm going through this with Nathan.
If you haven't been through what I'm going through or something similar then I don't expect you to know what I'm feeling, that would be dumb of me. This blog was created to tell you. Sam and I truly feel like we're in a nightmare and the hurt is beyond what we can describe. We definitely have good days and we have bad. To see our son whom we love so very much suffer is very very difficult and I do struggle. I've been told by the same person I should start thinking about others when I write. The point of this blog is to share not only Nathan's cancer story but to show everything that comes along with it. I want it to be real and it's for the people who'll come after Sam and I. It's for the next family who'll have a child diagnosed with cancer. I know the emotions that come with it. I know how it feels as a Christian to have my faith rattled and I want this out there for them when they start feeling this way, I want them to know that someone else felt that way to and they're not alone. Hopefully by that time we'll be where we can testify and they can read the journey, how raw and difficult it is, the ups and the downs and then get the conclusion at the end as to how God brought us out. Ever read the poem footprints, well for us it's like that, we know God is in the midst but at times it's just hard to feel His presence and if any other Christians ever feel this way they're not alone. Not only that but this blog is an outlet for me, when I'm feeling down, I write, I always have kept journals, but I decided to make this one public.
For those of you reading this who are going through something similar and for those of you who will be, I want you to know that it's ok to feel hurt. It's ok to cry, it's ok to be angry but try not to sin in that anger, and it's ok to cry out to God and above all tell Him exactly how you feel. When the emotions come upon you, tell Him.
For those of you watching someone go through a situation like this maybe this blog will give you insight on how to deal with them. When a person is told that their child has cancer it stops everything. The doctors tell you what the plan is, but even they can't tell you the outcome. It's not like having a cold and the doctor says: "take this and it should clear up in a few days." A parents love is usually deep for their children. Sam and I would give our lives in a heartbeat if it meant saving our children. It's a very hard thing to swallow, in an instant that parents life is turned upside down. There are times of laughter of course, but then there are other times where you literally feel like you're on the brink of depression. Then the treatments start and all the medications. All of the medical professionals are wonderful because even though they see cancer everyday, they're quick to tell you they don't have a clue how it'll feel going through it as a parent and the treatment you get at the hospital is top notch. But understand, if you can, how hard it is to get the diagnosis and then have to retell it over and over to family members and friends as they find out and want to know. We as parents know the intentions are good but still it's VERY hard for a parent to keep repeating the diagnosis over and over. Granted in a hospital situation they have to and you can do it. But outside the hospital it's harder because when you're dealing with the general public, they have no idea the emotions that go along with dealing with a child with cancer. Please try to be considerate of that parent. They may not want to repeat "what happened" over and over and they may not want to talk about the survival rate. We know that God is able, but we also know that truthfully our son could die and the reality of that is HARD to hear once and even harder to say over and over again.
What can you do? If anything just listen to what they have to say and let the parent give the amount of information they want to give and always, ALWAYS be willing to pray with that parent. Many people feel they have to offer something, then offer them prayer, or a shoulder to cry on, offer them laughter if the situation is appropriate for it. Offer them love, I remember a friend of ours called and just left a message on the machine saying nothing else but "I Love You." Don't get mad at them or take it personal if they go through a period where they don't return your calls right away. It's good to offer help but don't get mad if the person doesn't know what they want or need, truly it's a time when it's just hard to think straight, if you can cook then it's ok to drop off dinner or if you have something special God laid on your heart to do for them then do it. Send a card if you want but if you do anything just pray, pray and keep praying. Most parents are so caught up in what's going on with their kids they're not sitting around thinking "I'm mad that this person isn't calling etc." Truthfully all we want to hear is that our child is cancer free and we want the suffering to stop. Try to be patient with that person, when it seems they're hard to deal with and maybe they are but instead of getting angry with them why not pray for them. It could be a sign that they're hurting and it's definitely not a time to cut them down. Remember you're not there with them every night when they're waking up sometimes 4 times a night to deal with a sick child and this isn't just two weeks for a cold or a flu but EVERY SINGLE NIGHT for different lengths of time, you're not there when they have to rush that child to the ER at midnight, you're not there to see the side effects from the 14 medications that they're on, you're not there to see their little bodies left severely burned from radiation...I could go on and on...just realize you're not there, you don't see it. Be patient with them and if you have nothing positive to offer it's always ok to just say nothing.
Now in saying all of this I'm not saying constructive criticism may not be needed at times but I remember when I first visited the church where Sam and I are now members and our Pastor was preaching a sermon I'll never forget and it was called "Confronting in Love." It had me on the edge of my seat. If you're going to confront that person, please check your motive first. Pray about how you're going to confront them, because please remember they're hurting and the hurt is pretty much around the clock, they have up times of course but the hurt doesn't go away. So pray before you lash out. Ask God for guidance in what to say and also make sure you're close to that person and not just an associate. Maybe call and ask how their child or love one that's sick is doing before you confront see if you can help them in anyway. Sometimes what you may mistake as weirdness is really just hurt.
So the blogging is going to continue, I love my son and family so very much and I do want to share with you. I'm praying that in the end you get to celebrate with me Nathan's being cancer free and even if God takes Him I pray that in my writing you'll see God's hand in the midst and truthfully this account is going to help me. When I'm looking at the one set of footprints now I feel they're my own I can't wait to be able to look back realizing they were God's all along carrying our precious Nathan through this difficult journey. God Bless
Sunday, April 4, 2010
He's Gonna Live
So I told myself this past week that as long as Nathan is alive, he's going to live. The cancer has robbed him of so much but I promise that I'm going to make sure he has fun as often as possible. This past Wednesday I decided to take him to the zoo. He was so happy to be out. He wasn't feeling too well because of the radiation so he didn't walk much but it was still good to be out and since the zoo is so big and open it was easy to avoid crowds.
I heard a great program on Focus on the Family. It was actually an old broadcast dealing with childhoold cancer and I found it online and ordered it. One of the ladies lost her son when he was 8, he'd been dealing with cancer since he was 18 months old. She said something that struck me, she said that through it all she made sure that her son lived. If he was well enough to go somewhere then they went. She made sure that despite the pain, his life was still filled with good times.
Sam and I had a long talk on Thursday and we both feel we're on borrowed time now. Not saying we have a sense about what's going to happen truthfully we have no idea which is the hardest part about dealing with cancer. Some days are really great and we're so hopeful and others make us wonder what's going to happen. I don't get caught up with statistics at all anymore and I barely read about cancer and I have no desire to learn more about Rhabdomyosarcoma, it may not make sense to you but I learned all I really want to know about this disease anything else hasn't been of much benefit, if we start to question Nathan's treatment then i'll of course reasearch.
Truthfully I feel the outcome is specific to each individual, people do survive cancer and they survive the worst of cancers too. I've read about people who were told to go home and plan a funeral only to have the person recover and live long lives. So statistics mean nothing to me. Nathan and the rest of our family have life in us now so that's what we're focusing on.
I'm looking for a bigger stroller for Nathan, I've been blessed with an extremely tall child and his feet can touch the ground in most strollers and he's so long that his head hangs over the top and he gets too tired to walk when we're out so I'm going to get him the biggest stroller I can find so he can relax but still enjoy being out this summer. We're also fencing the yard and creating a mini playground in the back for him and Peyt. I'm also searching for more places for him that aren't confined or crowded but enjoyable for him and Peyt. I just got this new determination to enjoy life with him, Peyt, and Sam. As long as we're alive we're going to live.
Dear Lord,
Seriously we've all been kind of down lately. Nathan just completed radiation and Sam and I should be so happy about that but it's left us with an open wound. Please heal the wound, leave the scar to remind us of where you brought Nathan but please help heal the wounds. Nathan has gone through so much physical pain. Lord strengthen us once again. I know one day this will be a distant memory but it's hard to see past the present right now. We're sick of being on an emotional roller coaster. Lord I want Nathan to live but truthfully I'm concerned about him being in such physical pain. Lord I just ask that if you're going to continue to put him through pain that you'll let him be one of the survivors let it be worth something. Please let him grow old, please don't rob Peyton of her brother or Sam and I of a son. Lord let him stay here, allow him more time, allow him to outlive me. Lord I know who you are and I know you can do this. You alone control every breath we take. All you have to do is speak and things will be as you say. There is none like you and no one greater than you. Lord gives us peace and help us to accept your will for Nathan no matter what that is. You watched your only son suffer, you know what this feels like. Lord I can't add a single hour to Nathan's life by worrying, help us to have peace once again.
In Jesus name
Amen
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