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

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

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

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

Monday, November 25, 2013

Fever #1

Noah was admitted to Children's Hospital yesterday. He was battling a cough and looked very white so I decided to call the oncologist to see what their thoughts were. Because I am battling pneumonia I was very concerned. We started in Steinbach but were transported by ambulance to Children's.

The doctors did some blood work and found that Noah's counts are dangerously low, which makes him super prone to infections. We are still waiting for blood cultures to figure out if its bacterial, and where the infection is. If it's in his port, it could mean surgery to remove the port. Which would not be good as this is already Noah's second port on the other side. So for now they are treating it as bacterial until the know otherwise. Noah received a blood transfusion today as well.

There are some things in life you never forget. I will never forget the moment the doctor told us Noah had cancer. I remember the room clearly. The ambulance brought us to the exact same room that we found out Noah was sick July 4, 2012. It was a very odd feeling, seeing him in the room again. Sitting on the same bed, with the same picture of a wooden boat behind him. Me, sitting in the same small brown chair that I was sitting in when I heard the words your son has leukemia. Seeing the doctor leaning on the same counter telling me the risks of what low counts mean. It was a flood of memories and Noah and I both just wanted out of there. Luckily it only took about 3 hours and then we were in his room on CK5. Not the same room we stayed in before.

It's extremely frightening to see your child not well. You add cancer to it and it changes the game entirely. A simple cold is not so simple. Nothing is simple. Watching them access his port while tears pore down his cheeks is not simple. Being strong when the nurses and doctors are right there watching you try to calm your child is not simple. Nothing about having a child with cancer is simple. And some moments, if you let the fear of it all get to you, you feel like you are about to lose control of your entire body, mind and soul. But you can't because your child is depending on you. You have to be the strong one, you have to. There is no choice.

He's only 8. How can he possibly understand all this? And yet he surprises me so much. He is amazing. He is so brave, and strong and funny. I am in awe of my son. How this experience will mold him into a man one day, I can only imagine. But how do I get him there? How can I help him through this when sometimes all I want to do is scream "I HATE YOU CANCER!". And I did scream that, in my van, by myself. I hate this cancer. I hate everything about it. I hate what it has done to my son and our family. I hate seeing all those little ones in cancercare and on the ward battling it. I hate seeing my family suffer from it and die from it. I hate the fear that it brings in those of us that don't have it but surely will one day. I hate it. How do I turn this horrible thing into something good? To learn from? To help others? I just don't know.

And then in moments of clarity, I am so thankful. We have oncologists that we can call 24/7 and they will talk to us. We have a hospital not far away that will take Noah whenever they need to. We have so much. So much.

Thank you for the prayer. Prayer is one of those things where you don't really think you need it or should do it until you have nothing left to do but pray. It's terrible. We should be praying constantly. But we don't. We wait until things get bad and then we beg. But prayer is so important to do all the time. Sometimes I get caught up in how to pray or when or how long. And truthfully, throughout this last year and 5 months, my prayers have often been one word. Sometimes more, sometimes less. I just cant get any words out. Many times it's the word mercy. I can only manage to say the word, but I know that God hears my whole heart. I thank you all who lift us up in prayer when we just can't. It's so powerful, and we often don't realize that.
Melissa

Monday, October 21, 2013

A Reminder

I was reminded the other day of how old Noah really is. I was doing dishes and glanced up out the kitchen window. I seen Noah racing across the yard, running as fast as he could go, holding a paper airplane as high as he could. He had the biggest smile on his face, and that moment of watching him seemed to freeze. It connected with me so powerfully. I instantly was reminded that my son is 8.

This past year, he has been expected to do things that make adults crumble. He has been faced with challenges that a lot of ordinary people would break under the pressure of. He has had to be brave and courageous. He has had to become knowledgeable and responsible for things that kids shouldn't have to be. And I have often forgot that. Throughout these last 16 months, many times I have expected him to do things that are more than incredible. And he has. And so when I seen him flying that airplane across the yard, it made me think of how precious and young and innocent my little boy is. And that he is still capable of being that even after all that he has been through and will continue to face.

It was a huge reminder to me to let him be a kid at all times possible. Because there are still so many times where he has to put on that brave face and have an inch long thick needle pierced though his chest every month. Carrying medicine that kills cells, good and bad. That come with a slew of side effects that make your head spin every time you read them. He still has to take chemo every single day. Every day. And he does, without complaint. Yes, my son is amazing. And I need to let him be that silly fun loving boy more often. I need to do that with all my children. They have all had challenges this last year. I need to be more thankful of the times they are just being kids.

Thank you for your prayer. It is felt. Continue to pray that Noah will beat this cancer. That it will never invade his body again, and that he will gain so much more from having it, than from what he lost as a kid. Pray for Holly, it seems as though she is at her breaking point with Noah. And she is really struggling to tolerate him. Pray for Coltan. The surgeon called and he wants to do another xray or possible CT scan in March after he turns 2. With surgery to remove the malformed part of the lung next year. Pray that when they do the xray or CT, that his lung will be healed. And that surgery will not be necessary. The thought of another child of mine having surgery is too hard right now to think about.
thank you all, Melissa

Tuesday, September 17, 2013

The start of school

Another school year started. Noah doesn't complain to go to school, but he sure isn't excited about it either. Plus he just had IV chemo just a few days into the school year so that doesn't make things easier. It seems that every month, the steroids are affecting him more and more. This week he has been increasingly moody. His muscles are sore, he had bad diarrhea and hasn't wanted to eat much. He even crawled into bed with me the other night because he just wasn't feeling good. It's nights like that that I am reminded of just how sick my son is. So often he is well, he is active, he doesn't look sick. And its sometimes easy to forget for a bit that he has cancer. Which is a blessing. I'm not complaining that that's how lucky we have been. It just makes those times where he isn't feeling well, or struggling with friends or school a bit harder to see.

And he does seem to be struggling. He hasn't connected with any of his friends from last year. And I'm not sure why. It could be that they are all so active and involved in sports, and Noah just doesn't fit that mold anymore. His body has taken a blow, and it's been hard for him to catch up physically. I just hate hearing that he spends his recesses alone. He says he doesn't mind, but I think he does. He just seems so afraid to approach his old friends, or anybody in his class even. Its hard to see.

We are still seeing the child psychiatrist. He has been gone all summer so we have only gone 3 times since June. Noah really likes him so hopefully he can help him work out some of these issues.

Yes, some times it's easy to forget my son has cancer. And I need to embrace that feeling more when I get it. Because every time I open facebook and see my mom group for kids with cancer, I see a new little face that's just diagnosed. Or I read another heartbreaking story of another child that earned their angel wings. Or I read of another little one's fight with leukemia that is so much harder than my son's is. It reminds me of just how fragile his life is. Any of our lives are. It's so hard not to ask why. Sometimes I just want an answer. Why do these little ones have to suffer. Why does anyone have to suffer from cancer, or other horrible diseases. It doesn't seem fair.

Our list of prayer requests remains mostly the same. Pray that Noah will beat this cancer and that it never ever comes back. That he will make friends again, and keep up with his school work. That he will really benefit from seeing the psychiatrist and our family life can get a bit more relaxed. That Holly will continue to be healthy, and not hate Noah forever because of how horrible he treats her. That Coltan's lung will be healed and he will never need surgery to remove it. That Chris and I will gain all the wisdom we possibly can for parenting our children. Through sickness and health. Thank you all who pray for us. I am convinced it is what gets us through each day.
Melissa