Well the time has drawn near, very near to be sure. 3 more sleeps until we board the plane. I think we are in the clear, we have pulled the kids from school to eliminate excess exposure to illness and such. We havn`t gone to church, nothing. We have been in lock down mode. Needless to say I think we are all really ready to get to Disney Land! I have been homeschooling, which was waaaaay harder than I thought. Especially during a chemo-steroid week. Some days were impossible to get things done. But we managed.
I have been feeling anxious. Coltan`s lung issue creeps into my head, and I have had to really work with myself to not let the crazy thoughts get out of control. I am also a bit nervous for flying, and flying with the kids too. Thank goodness we will have all the grandparents with us!
I think we are all finally letting ourselves become excited for this trip. The kids knew that if someone got sick close to the trip, then we couldn`t go. Our kids have had to act much more mature than their age allows. They have been asked to do really hard things, and they have. But now, we are 3 sleeps away, and it really feels like we are actually going to go. Please pray no one gets sick!!! We really want to go. We need to go.
We are all so excited to stay at Give Kids The World Village. This is a once in a lifetime opportunity. We can travel back to Disney, but we will never be able to stay there again. It seems so amazing, and we just cant wait.
So, our flight leaves Monday March 10 at 3pm. Please pray for us. For all of our health. That we will manage well on the flight, and that we will have an amazing week. That none of us will be sick, that we can just be together and have this time as a family.
Thank you all for your love and support. We couldnt make it without it.
Melissa
Friday, March 7, 2014
Saturday, February 15, 2014
Seriously
We are feeling very defeated today. Feeling like our trip will never happen. Holly came down with a fever last night, sore throat, headache, no appetite and no energy. All signs of chicken pox. If this is the case, the boys will be at risk for getting them over our trip. This is awful. It feels as though we cannot get a break. It is constantly one thing after another.
We had just gotten the go ahead from the surgeon for Coltan to fly on Thursday. I was just starting to accept this and actually starting to think about the trip again. And now this. It's like we can't even process one thing before the next thing hits.
We have sent Holly to grandma and grandpa's for at least 2 nights. What good this is, we don't know. Honestly, how can we prevent this? I feel like a horrible mom for sending my poor sick little girl away. When all I want to do is hold her and take care of her.
We are so tired of doctors, and hospitals, and sickness, and the possibility of sickness. Its neverending. Ever.
We also just made the decision to pull the kids from school because of all the chicken pox outbreaks. Now I am wondering if it's all too late. Or just a big waste of time and energy.
Please pray for us. This trip is so important for us. But it feels like its just slipping away. Please pray that Holly will get better, her fever will break and it wont be chicken pox. Please pray that Noah and Coltan remain healthy. This is so stressful. So hard. Please pray that Chris and I can remain hopeful. It's really hard sometimes. Please pray that we remain positive and faithful, and hopeful.
Melissa
We had just gotten the go ahead from the surgeon for Coltan to fly on Thursday. I was just starting to accept this and actually starting to think about the trip again. And now this. It's like we can't even process one thing before the next thing hits.
We have sent Holly to grandma and grandpa's for at least 2 nights. What good this is, we don't know. Honestly, how can we prevent this? I feel like a horrible mom for sending my poor sick little girl away. When all I want to do is hold her and take care of her.
We are so tired of doctors, and hospitals, and sickness, and the possibility of sickness. Its neverending. Ever.
We also just made the decision to pull the kids from school because of all the chicken pox outbreaks. Now I am wondering if it's all too late. Or just a big waste of time and energy.
Please pray for us. This trip is so important for us. But it feels like its just slipping away. Please pray that Holly will get better, her fever will break and it wont be chicken pox. Please pray that Noah and Coltan remain healthy. This is so stressful. So hard. Please pray that Chris and I can remain hopeful. It's really hard sometimes. Please pray that we remain positive and faithful, and hopeful.
Melissa
Wednesday, February 5, 2014
What the surgeon said
I met with the surgeon on Monday, expecting him to confirm what the nurse told me over the phone, that it was not safe for Coltan to fly. Instead as I sat down, he says to me that the chance of Coltan's lung lesions rupturing as miniscule and that we should not cancel our trip.
WAIT, WHAT??
Yeah. That's where I am at right now. He said that the nurse didn't have all the information, or something along that line because my brain was still trying to comprehend what he just said. And that there was a greater chance of the plane crashing then Coltan's lung leaking air.
So why in the world can I not accept this?? I cannot get what the nurse said out of my head. I know that I should trust the surgeon, he is the best in his field, but where did this mis communication occur? How could the nurse have said that she spoke to the surgeon and he advised no flying, and then the surgeon says its such a small chance to not cancel the trip?
I feel so torn. I wish the nurse hadn't said anything and that I just spoke to the surgeon directly. But now I have these two drastic differences of information in a matter of 3 days. So my mom advised to make another appointment with the surgeon and have Chris there with me so that its not just falling on my ears and the weight of the decision isn't falling on my shoulders, as it feels.
I so appreciate your prayers and support in this. It's been so difficult. We meet with the surgeon Feb 13. From that date it will be less than a month until our trip.
As for Noah, he is doing well. He is still difficult emotionally, and asked me last week if I thought he was going to die from cancer. So I know he thinks about it, and I know what I think matters to him. It still isn't easy hearing your child ask you that. Especially if you cant answer it with 100% certainty. But I didn't show my hesitation. I answered with a strong no. But honestly, if you are on facebook for 5 minutes, you see another new cancer diagnosis. Another angel. Kids with leukemia, just like Noah. Same age. Everything. It's hard not to doubt at times.
But he still goes to school, I kept him home a couple days due to a chicken pox outbreak in his class. We have until Feb 7 to see if he was exposed. Please pray he doesn't get them.
As for Holly, she buckles under Noah's relentless bullying on her. Its heart breaking, and I cant stand it. We may resume counselling with Noah's first counselor that can see him again. It's just so frustrating and nothing we say or do stops him from bothering her.
My anxiety has been hard to handle. It started in November and has increased. I have meds but havn't started them. Not sure if I will.
Thanks for your prayer, it gets us through our days.
Melissa
WAIT, WHAT??
Yeah. That's where I am at right now. He said that the nurse didn't have all the information, or something along that line because my brain was still trying to comprehend what he just said. And that there was a greater chance of the plane crashing then Coltan's lung leaking air.
So why in the world can I not accept this?? I cannot get what the nurse said out of my head. I know that I should trust the surgeon, he is the best in his field, but where did this mis communication occur? How could the nurse have said that she spoke to the surgeon and he advised no flying, and then the surgeon says its such a small chance to not cancel the trip?
I feel so torn. I wish the nurse hadn't said anything and that I just spoke to the surgeon directly. But now I have these two drastic differences of information in a matter of 3 days. So my mom advised to make another appointment with the surgeon and have Chris there with me so that its not just falling on my ears and the weight of the decision isn't falling on my shoulders, as it feels.
I so appreciate your prayers and support in this. It's been so difficult. We meet with the surgeon Feb 13. From that date it will be less than a month until our trip.
As for Noah, he is doing well. He is still difficult emotionally, and asked me last week if I thought he was going to die from cancer. So I know he thinks about it, and I know what I think matters to him. It still isn't easy hearing your child ask you that. Especially if you cant answer it with 100% certainty. But I didn't show my hesitation. I answered with a strong no. But honestly, if you are on facebook for 5 minutes, you see another new cancer diagnosis. Another angel. Kids with leukemia, just like Noah. Same age. Everything. It's hard not to doubt at times.
But he still goes to school, I kept him home a couple days due to a chicken pox outbreak in his class. We have until Feb 7 to see if he was exposed. Please pray he doesn't get them.
As for Holly, she buckles under Noah's relentless bullying on her. Its heart breaking, and I cant stand it. We may resume counselling with Noah's first counselor that can see him again. It's just so frustrating and nothing we say or do stops him from bothering her.
My anxiety has been hard to handle. It started in November and has increased. I have meds but havn't started them. Not sure if I will.
Thanks for your prayer, it gets us through our days.
Melissa
Monday, February 3, 2014
Heading out the door
Just about to head out the door to meet Coltan's surgeon today and see what the plan will be regarding surgery and flying. But I just wanted to share with you something that occurred to me last night and reinforced this morning.
Last night as I was in the shower, feeling the water hit my head and face, it made me think of how the water seemed like the stress in my life. And there is so much with having sick children. But God's grace is like an umbrella that prevents the water from drowning me. I can still feel the water hitting the umbrella, but it's not killing me. His grace is enough.
This morning as I was reading my bible app on my phone (which by the way has been my saving grace many a day) this is the verse that popped up:
Psalm 5:11-12
But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. Surely Lord, you bless the righteous; you surround them with your favor as with a shield.
It seems as though the 'umbrella' that I feel is my shield. My protection. Keeping the faith.
Thank you for your prayers and encouragement.
Melissa
Last night as I was in the shower, feeling the water hit my head and face, it made me think of how the water seemed like the stress in my life. And there is so much with having sick children. But God's grace is like an umbrella that prevents the water from drowning me. I can still feel the water hitting the umbrella, but it's not killing me. His grace is enough.
This morning as I was reading my bible app on my phone (which by the way has been my saving grace many a day) this is the verse that popped up:
Psalm 5:11-12
But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. Surely Lord, you bless the righteous; you surround them with your favor as with a shield.
It seems as though the 'umbrella' that I feel is my shield. My protection. Keeping the faith.
Thank you for your prayers and encouragement.
Melissa
Friday, January 31, 2014
A Set Back
We received some news last night that Coltan would not be able to fly with us to Florida for Noah's Wish Trip. The trip is booked for March 10-17, all of us are ready to go, grandparents, and uncle. But I had this feeling in me to call Coltan's surgeon and ask about his safety on an airplane, particularily the pressure. Sure enough, the pediatric nurse that works with the surgeon called me back and said that it would not be safe for Coltan to fly. The pressure in the plane could cause the lesion in Coltan's lung to burst and fill his lung with air. It could be fatal.
My heart sank when she said this to me. We are all ready to go. Flights are booked. And now this. I just couldn't believe it. Yet I knew there would be a possibility because I had that feeling to call and check it out. I started to cry on the phone with the nurse. I just couldn't help it. She started to cry too when she found out that we had this trip planned because of Noah and his battle with leukemia, and that our whole family was going too.
She was very nice and explained things well to me. She said that I should come in Monday and speak with the surgeon and maybe we could retest Coltan and see where his lung is at. But if there is any risk at all, we will not take it. Now it's a matter of figuring out what to do, if we want to postpone the trip until after Coltan's surgery, or have my parents drive with him. Or leave him here with my parents,or leave him here with someone else, and we wouldn't know who to leave him with at this point.
Perhaps what is the most hard to accept is the big reminder that this is. Coltan is sick too. And we knew that since I was pregnant, but he doesn't look sick or act sick. And with Noah's cancer, that is where our focus has been. This is a huge reminder that Coltan will need major surgery to remove part of his lung. And it hit me really hard. My boys are sick. And there is nothing that I can do about it. Nothing I can do will take this away. It's so very hard.
I like to think that I am a normal mom. But I'm not. I'm a peds mom. (pediatric mom). I think differently that other moms do because I HAVE to. A simple plane ride isn't simple. A plain old cold, isn't just a cold. A kid in school with chicken pox, poses a huge threat to the safety of my child. This is our life, our reality. Sadly I am not alone. There are so many of us, and sometimes it really get's to me. Seeing those parents with their sick children. Seeing my friend, lose her little boy. Seeing my boy fight a battle that no kid should have to fight. It's overwhelming some days. And I only get through it because there is no alternative. I have to. And even though when I hung up the phone with the nurse and threw my hands up in the air saying 'what now'? God. What now? I know that He knows. But sometimes it feels extraordinarily hard to have faith. Faith that things will be ok, because they so often aren't ok.
So please pray for some clarity for us and our families, as we need to figure out what to do next. My prayer remains the same, that Coltan will be healed and Noah too. That Holly will not be scarred from being neglected during these years of focusing on her brothers. That my anxiety (which has been increasingly bad since November) goes away. Thank you all so much for remembering our family. We do feel your prayer, and I believe it get's us through every day. Please think of all the other families that are fighting for their kids. The list is long and it grows everyday. And even though you don't know them by name, God does.
Melissa
My heart sank when she said this to me. We are all ready to go. Flights are booked. And now this. I just couldn't believe it. Yet I knew there would be a possibility because I had that feeling to call and check it out. I started to cry on the phone with the nurse. I just couldn't help it. She started to cry too when she found out that we had this trip planned because of Noah and his battle with leukemia, and that our whole family was going too.
She was very nice and explained things well to me. She said that I should come in Monday and speak with the surgeon and maybe we could retest Coltan and see where his lung is at. But if there is any risk at all, we will not take it. Now it's a matter of figuring out what to do, if we want to postpone the trip until after Coltan's surgery, or have my parents drive with him. Or leave him here with my parents,or leave him here with someone else, and we wouldn't know who to leave him with at this point.
Perhaps what is the most hard to accept is the big reminder that this is. Coltan is sick too. And we knew that since I was pregnant, but he doesn't look sick or act sick. And with Noah's cancer, that is where our focus has been. This is a huge reminder that Coltan will need major surgery to remove part of his lung. And it hit me really hard. My boys are sick. And there is nothing that I can do about it. Nothing I can do will take this away. It's so very hard.
I like to think that I am a normal mom. But I'm not. I'm a peds mom. (pediatric mom). I think differently that other moms do because I HAVE to. A simple plane ride isn't simple. A plain old cold, isn't just a cold. A kid in school with chicken pox, poses a huge threat to the safety of my child. This is our life, our reality. Sadly I am not alone. There are so many of us, and sometimes it really get's to me. Seeing those parents with their sick children. Seeing my friend, lose her little boy. Seeing my boy fight a battle that no kid should have to fight. It's overwhelming some days. And I only get through it because there is no alternative. I have to. And even though when I hung up the phone with the nurse and threw my hands up in the air saying 'what now'? God. What now? I know that He knows. But sometimes it feels extraordinarily hard to have faith. Faith that things will be ok, because they so often aren't ok.
So please pray for some clarity for us and our families, as we need to figure out what to do next. My prayer remains the same, that Coltan will be healed and Noah too. That Holly will not be scarred from being neglected during these years of focusing on her brothers. That my anxiety (which has been increasingly bad since November) goes away. Thank you all so much for remembering our family. We do feel your prayer, and I believe it get's us through every day. Please think of all the other families that are fighting for their kids. The list is long and it grows everyday. And even though you don't know them by name, God does.
Melissa
Tuesday, December 31, 2013
Day 545
Today is the last day of 2013 (surprise surprise). It also marks the first full year that Noah has been on chemotherapy to fight this cancer. Day 545 to be exact.
545. 545 days have gone by since we found out Noah had leukemia. It's amazing really. Many good days, many bad. Today was a day where I really noticed it. I noticed the toll it has taken on his little body, and he's not even half way done yet. It's hard to wrap my mind around.
He had IV chemo yesterday and started the steroids for this week. It turns him into a boy I don't really know. It sucks. He just isn't himself, and it's hard to see.
But we have another year under our belt, and there's no other option but to press on. Count our blessings and press on.
Happy New Year everyone, I encourage you all to count your blessings. One by one.
Love
Melissa
545. 545 days have gone by since we found out Noah had leukemia. It's amazing really. Many good days, many bad. Today was a day where I really noticed it. I noticed the toll it has taken on his little body, and he's not even half way done yet. It's hard to wrap my mind around.
He had IV chemo yesterday and started the steroids for this week. It turns him into a boy I don't really know. It sucks. He just isn't himself, and it's hard to see.
But we have another year under our belt, and there's no other option but to press on. Count our blessings and press on.
Happy New Year everyone, I encourage you all to count your blessings. One by one.
Love
Melissa
Tuesday, November 26, 2013
A story to share
I have to share what happened today to me. I think it proves that there are usually no coincidences. So this morning Chris and Noah were still at the hospital, but I had made an appointment at the Steinbach walk in for myself because I am still not feeling great with this pneumonia and yesterday was my last day of antibiotics. I wanted to make sure that I was on the right path to healing before Noah came home.
I was originally going to make an appointment with my new dr in St. Anne, but for some reason I just called the walk in in Steinbach. Made an appointment with any dr they gave me. I almost cancelled because I knew Noah would most likely be coming home and I would have to go pick them up, but I really wanted to get checked again to see if I needed another round of antibiotics, so I kept it.
When I called, I asked if they had an isolation room that I could wait in because I would have Holly and Coltan with me, and I explained the situation with Noah and told her I couldn't risk sitting in a full waiting room of sick people. The lady on the phone was very nice and said she would pass on the request. I ended up being able to leave my kids with my mom and so I went to my appointment alone. When I registered I inquired about the isolation room. The nurse brought me into a room immediately and told me that if I hadn't asked about this that I would have had to wait over an hour to see the Dr, but that he had agreed to see me next rather than making me wait. I thanked her numerous times, feeling a bit bad that I had been bumped up.
Then the Dr. came in. I had never before met this dr. He introduced himself to me and asked me what was going on. I explained the pneumonia, and the situation with Noah. He examined me, and thought I should probably go on another antibiotic for another week. Which is fine, I just want to be well for Noah.
He then looked at me, paused and I could see he wanted to say something. He asked me if he could ask me what my son's name was. I said of course, it's Noah. He then took another few seconds, and asked me if he could pray for us.
I looked at him, and my eyes filled with tears. Here is this man, that I have never met, put me at the front of the line, and now has asked to pray for my son. I was stunned. I of course said yes. He then proceeded to get down on both his knees, hold my hand and pray for a long time. Praying for healing, commanding the leukemia to leave Noah's body. I couldn't believe this. As I sat there, with this dr on his knees, holding my hand praying with such faith for my Noah. It was a moment that I will forever cherish.
After he was finished, he got off the floor and back on his chair. I looked at him and said I just dont even know what to say or how to thank you. He just shook his head, there was no need to. He told me that he has witnessed miracles happen countless times. That he has seen cancer disappear. He encouraged me to look up versus about healing and read them over and over.
I asked him if he was accepting new patients! He looked at me and said that he wanted to be honest, and that he had been here for 5 years and was totally booked full all the time. (I can see why). But he then said, if I ever needed to see him all I should do is call the office and tell them that I am not his patient but that he would see me or Noah anytime we needed.
Can you believe this?? I walked out of that office praising the Lord. God is here, He is alive and with us always. This I knew, but what a reminder today. I am not going to disclose this doctors name, for personal reasons. So please don't ask me. Just know that there are angels everywhere:)
Melissa
I was originally going to make an appointment with my new dr in St. Anne, but for some reason I just called the walk in in Steinbach. Made an appointment with any dr they gave me. I almost cancelled because I knew Noah would most likely be coming home and I would have to go pick them up, but I really wanted to get checked again to see if I needed another round of antibiotics, so I kept it.
When I called, I asked if they had an isolation room that I could wait in because I would have Holly and Coltan with me, and I explained the situation with Noah and told her I couldn't risk sitting in a full waiting room of sick people. The lady on the phone was very nice and said she would pass on the request. I ended up being able to leave my kids with my mom and so I went to my appointment alone. When I registered I inquired about the isolation room. The nurse brought me into a room immediately and told me that if I hadn't asked about this that I would have had to wait over an hour to see the Dr, but that he had agreed to see me next rather than making me wait. I thanked her numerous times, feeling a bit bad that I had been bumped up.
Then the Dr. came in. I had never before met this dr. He introduced himself to me and asked me what was going on. I explained the pneumonia, and the situation with Noah. He examined me, and thought I should probably go on another antibiotic for another week. Which is fine, I just want to be well for Noah.
He then looked at me, paused and I could see he wanted to say something. He asked me if he could ask me what my son's name was. I said of course, it's Noah. He then took another few seconds, and asked me if he could pray for us.
I looked at him, and my eyes filled with tears. Here is this man, that I have never met, put me at the front of the line, and now has asked to pray for my son. I was stunned. I of course said yes. He then proceeded to get down on both his knees, hold my hand and pray for a long time. Praying for healing, commanding the leukemia to leave Noah's body. I couldn't believe this. As I sat there, with this dr on his knees, holding my hand praying with such faith for my Noah. It was a moment that I will forever cherish.
After he was finished, he got off the floor and back on his chair. I looked at him and said I just dont even know what to say or how to thank you. He just shook his head, there was no need to. He told me that he has witnessed miracles happen countless times. That he has seen cancer disappear. He encouraged me to look up versus about healing and read them over and over.
I asked him if he was accepting new patients! He looked at me and said that he wanted to be honest, and that he had been here for 5 years and was totally booked full all the time. (I can see why). But he then said, if I ever needed to see him all I should do is call the office and tell them that I am not his patient but that he would see me or Noah anytime we needed.
Can you believe this?? I walked out of that office praising the Lord. God is here, He is alive and with us always. This I knew, but what a reminder today. I am not going to disclose this doctors name, for personal reasons. So please don't ask me. Just know that there are angels everywhere:)
Melissa
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