Saturday, July 28, 2012

Some things I have learned - Melissa

Some things I have learned this month:
-when I see an over weight kid throwing a huge fit or crying or freaking out for no apparent reason, I will NOT assume that the parents are push overs and let their child eat and do whatever they want. Their child may have cancer or some other disease and is on steroids.
-when I see a woman out in public, and she looks like a complete and udder mess, I will NOT assume she is lazy and has let herself go. She may be going through the worse time of her life and that 'look' is all she can manage.
-when someone is grouchy to me, such as a clerk or someone serving you (even a waitress), I will not hold it against them. Who knows what trials they are facing away from work.
-When my children have called me back into their room at bedtime for the 15th time, I will still go because they may need to tell me that they feel sad about something and need to know that I care. Even if its late and I am tired, they need to know that I am there for them, always.
-I have learned that a sense of humor can take you a fare bit and lighten your load.
- that tears are ok, even if its in the middle of superstore.
-that God is here. He has always been here and always will be.
-that I still need reminders of simple things everyday.
-prayer is always working, even if you aren't the one able to do it.

more to come, I am sure about that.

thinking clearly or something like it

It has been 3 1/2 weeks now since we learned Noah has leukemia. Its only now that I am starting to think a bit clearer and remember some things that happened earlier on in his diagnosis.  I am having trouble sleeping, and when I lay in bed I think back to that first day in the er at Children's. We had no idea. No idea how our lives were going to change. Its been such a roller coaster.

We are seeing I think the worst of the side effects from the steroids. Noah has been in rages for the last 2 days. Its unbearable. I am exhausted and completely out of ideas on how to control this. I don't think we can. He has gained 10lbs in one week. For a boy who weighed 51lbs, this is a big jump. The chemo he had yesterday causes his nerves to not work as well, and because of the weight gain, his balance is off. He fell yesterday and scraped his knee on the street. Which of course makes me worry now for infection. I hate this. I hate ever single part of this. He doesn't look like my Noah, doesn't act like my Noah.  I just want this to be over.

I have found myself questioning if chemo is the right answer. Its so harsh. There are so many things we just don't know, and so many decisions we have to make now. I just want someone to tell me that everything is going to be ok, and actually know that it will be. Not just say it because that's what you say to someone with a child with cancer.

I ran into an old friend today. The week her daughter was killed in an accident, I was only a couple weeks away from my due date with Noah. I remember hugging her at her daughters funeral, and as she hugged me she whispered into my ear to love and take care of this baby. And now here I am, 7 years later. Noah has cancer and there is nothing I can do to take it away. Are we making the right medical choices? I can't take this away from him. I can't make the procedures any less painful. I can't do anything to make this better.

Today she hugged me and whispered into my ear once again. She said she was so sorry that I have to go through this, but in the end we will come out stronger. So maybe she is my someone that knows. Her daughter didn't have cancer, but she died. I still have my son. And even though I don't know the outcome I need to live like I do. So when he screams at me and tells me to stop talking and leave him alone, he still has to get sent to his room.

I'm not sure this post made any sense whatsoever. I am so tired. And just typing away not double checking anything. Just typing any thought that comes into my head. And this is me thinking more clearly...
-Melissa

Wednesday, July 25, 2012

Noah the Hedgehog

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The side effects

The side effects are hard for me to handle. Noah is on a steroid to combat this cancer. But, in the process of killing the leukemia, it also kills the good cells too, and comes with a page long list of side effects. The ones that we are seeing and that are hard are the extreme mood swings. He can be in a fit of almost rage in just a moment. Most is directed at Holly. Which is so hard for her as she has sometimes done nothing or very little to warrant the fit. Last night in the middle of the night as he was eating one of the frozen meals that we have on hand for him, he had a bit of a sore in his mouth and the sauce was burning it. He became furious, but at Holly. It was really hard for me to see, and almost nothing works to calm him down.

The other side effect is the extreme appetite. He will eat meal after meal, non stop all day. Alot of my day is spent in the kitchen preparing food for him. Yesterday he almost polished off an entire jar of pickles. He craves salty and alot of it. The other problem is that the dex (steroid) causes water retention, and paired with the salt, he is very puffy. His belly is 3x the size it was, and his cheeks are completely puffed out and round. This is very different than how he was before. Its hard for me to see. Not only does he act differently, he looks so different as well. And to know that his little body was full of cancer is just heartbreaking.

The dex also causes him to be very hot. He usually has to have a fan on him all the time. He doesn't want to go outside because its so hot lately, and he just doesn't have the energy. Right now, its 10:30am, and he is already having a nap. Yesterday he slept for 2 hours in the afternoon. His sleep at night is disrupted, mostly by the need to eat. He will eat full meals in the night, sometimes several times.

Since his port removal on Friday, he is doing well. The stitches are holding and he is not complaining about them at all. So that has been good. He did however start to complain about pain in his jaw. This was from the chemo he received during the clinic visit on Friday. It causes the nerves to be sensitive and there is a large nerve that runs through the jaw. We cannot give him advil or tylenol. We rather have to take him to our family doctor or the er and get a prescription for morphine. The pain subsided and we didn't end up having to do that. Hopefully this first month will just bring the worst of it and it will be over soon. But we cannot say for certainty that that is the case. We will know more after his next bone marrow aspiration on Aug. 3/12.

Prayer requests: Complete healing for Noah. That the cancer will be completely gone and never return. That the side effects can be managed well.

Praising God in the Darkness

If you cannot praise Jesus when times are rough, when can you?

When you worship the Lord in your weakness and distress during the darkest hours, it means more to Him than the millions of angels praising him around His throne in heaven.

Sometimes this is all I have to hold onto, yet it has not failed me even once. I know that Jesus is much, much stronger than this situation, much much stronger than this set of circumstances. It is my life preserver in the midst of a stormy sea.

To know that I have the power to bring joy to the Father's heart, to touch Him like at no other time in my life, reminds me that I must not waste this opportunity.

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Saturday, July 21, 2012

Port removal

Yesterday was Noah's first clinic visit to receive his chemo meds by his central line. When we got there the nurse removed the steri strips and to my horror, seen a gaping hole in Noah's chest with the port clearly visible. I felt sick to my stomach. How could I have missed this? They assured me that this was not our fault, as we were not suppose to remove the bandages at all. But I had been concerned about it since Tuesday already. I had tried to look at it all week, and I had carefully lifted the strips when they had become loose and did not see anything that looked like that. So we think it must have opened Thursday night. So, they could not administer the chemo through the port, they had to start an iv in his hand.

By this time it was 12:30pm, we had all three kids with us at the Cancer Care Clinic and they told us the earliest that they could do Noah's surgery was 6pm that night. We thought it would be best then if we took our other kids back home to be watched while we traveled back for 6 for the surgery. As we walked in the door at 3:15 that afternoon, the surgical ward called saying they could take us at 4pm. I was absolutely furious. Had we known that they could take him that early, we would never have left the hospital. Now, we have spent over 3 hours in the car and need to go back yet.  Then when we got to the hospital and spoke to the surgeon, she asked us why we left. She said that she was told we had 'things to take care of'. Again, furious. What things to I have to take care when my son has a gaping hole in his chest and needs surgery?

So then the surgeon proceeds with all the complications that can come from removing a port. Like coils shooting up into his vein and into his heart, in which case they would need to go through his abdomen and remove it from his heart. Chris and I sat there, completely overwhelmed. Now it feels like the risks of this are outweighing the benefit.  We later learned that Noah's skin opened up because of the steroids he is on. It makes the body unable to heal as well. If we had known this, we may have waited until this first month of pumping him full of steroids was over, then put the port in. It just feels so rushed. Why did they do it so soon? They told us they do it soon because they do not like to stick kids with iv's. And now, because of this they have to stick him with iv's every week for his chemo meds. They want to book another surgery in 5 weeks to implant another port. Chris and I feel very leery about this. This was so frightening. I can't even explain the feeling of absolute sickness that came over me when they took that bandage off and there was a hole in my sons chest with a metal button sitting right there in plain sight. It was awful. And now, our poor kid has had 2 surgeries in 2 weeks, and been put to sleep an additional two times for spinals and a bone marrow extraction. This is horrible. I hate this.

After the surgery, they let us go home. Which I was/am very nervous about. If I missed a hole in his chest before, how am I suppose to catch something else? He has permanent stitches that need to be removed in 10 days. I can take the bandages off tomorrow and look at the site. Not that I want to. This is so frightening. I feel like I am constantly checking him to feel if he is feverish. Constantly looking at his chest to see if its red or swollen. A fever will land him in the hospital for a few days and can be life threatening.

From that first day on July 4th, when we learned that it was leukemia, the doctors and nurses all told us, you are his parents, you know him best. But I feel like I don't. I feel like I have missed so many things. From the time that his lymph nodes started to blow up in November, to the time 2 weeks ago when he was pale I feel like I should have known. I feel like we are being rushed into decisions when I am not mentally stable enough to make them. I feel like the steroids are turning him into a monster. So if I missed something before when I 'knew' him, what am I missing now?  Somebody please tell me this is a horrible dream, and wake me up.

Through all this Noah has been dealing quite well with the iv's and even the surgery. He likes being put to sleep and isn't afraid at all. He wakes up from his anesthetic very well and is actually quite funny. He had the nurses roaring with laughter last night. The other positive is that we found out that Noah is Low-Standard Risk for treatment. When I learn more about what that means I will let you all know. We know its better than High Risk. Some down side things are that the steroids make him unbearable. He screams and yells at us over anything. He cannot calm down very well either. It takes a long time to give him his meds because he hates them so much, and it ends up being a 20 minute fight each time, which can be 6 times a day. He is absolutely horrible to Holly. He wishes her dead even. And when we try to talk to him, he just screams at us and wont even let us speak. It is extremely taxing. And even though we know it is the steroids, it doesn't really make it any easier. Our child still has cancer. And that sucks no matter what.

Noah gets mad at the doctors, and calls them names (not to their face thank goodness) but its still hard to deal with. It seems we can't reason with him. He doesn't understand that its not the doctors fault that he has to go through all this. He doesn't get that they are the ones trying to help.  I find it difficult to help Noah with that attitude, because in many ways I feel the same. I sat in the cancer clinic yesterday and felt myself start to fall apart a bit. I didn't want to be there. I did't want to see all those kids with cancer, and know that my own child is one of them. I found myself feeling angry at the people that were smiling and laughing. I hated the wall paper that was on the wall and the leaf printed chairs. I just didn't want to be there. I didn't want this to happen to us. So how am I suppose to tell my son to have a good attitude when I struggle as well. And I am not so naive to think that he cannot sense at least part of what I am feeling. This is so hard. Hard hard hard.

Even though I know that the Lord is carrying us through this, my faith has taken a blow. And perhaps that is the biggest struggle of all. I know that God did not give Noah cancer. I know that. But I just feel like He isn't hearing me. So many times these last couple weeks I have called out to Him, can't you hear me? I am not strong enough for this God. You picked the wrong people. I can't do this. Please pray for us. Because even though I feel hurt and alone by God, I know I am not. But it's hard.  I always prayed for my children. I always said, never my children God. And now here we are. I just want to know that at the end of all this, that it won't be all for nothing. That I will still have my Noah. That we will pull through stronger than we were before. That perhaps our story will change someone's life. I just don't want my child to die to learn those things.

This has been a long hard 2 days. And so this post was filled with alot of emotion. I feel at a very low point right now, and its hard to see into the future at all. I have to go day by day.

Prayer Requests: Complete healing for Noah, that the cancer will be gone and never return. For my sanity. For our marriage, to remain strong and healthy. For Holly and Coltan, as this is hard for them too. That Noah will take his meds better. That doing chemo through his iv will be the best option.

And for all of you that have emailed, called, prayed and supported us through this, there are not words that can express how truly grateful we are. When I feel like God isn't hearing me, I know that He is, and that is because of all the prayer we have received. Thank you all so much. -Melissa

Thursday, July 19, 2012

For the kids

When we first started this blog, the intent was to keep you all informed about Noah and updated. I didn't realize that I would use it so much as an outlet for my emotions. So, as I speak to some of my friends and family that have children, I learned that they are reading some of what we blog to them. Which is totally fine and wonderful. But I do realize that some of it may be hard to read and hard for them to understand as well. Nevermind all the questions that they have. So I thought that I should write something to all the kids that would like to hear about Noah, so here goes...

Hi there guys, this is Noah's mom. Some of you know me as Noah's mom:), Miss Melissa, or in very special circumstances Missy:)  I thought that I should let you know how Noah is feeling these days. He is home from the hospital and having fun playing video games. Its hard for him to play outside because he gets tired very easily. And he should not be in the sun too much either.  Noah has to take alot of medicine that is not very fun, so if you could remember to pray for him that taking his medicine would get easier, that would be great! One thing that lots of kids want to know, is what will happen when Noah loses his hair? Noah feels ok about losing his hair, but let's remember not to laugh when that happens because that will hurt his feelings. And besides, it will grow back one day.  Some of you may want to know whats wrong with Noah. Noah has something called leukemia. That is also called cancer. Cancer can be a very scary word because maybe you had a grandma or a grandpa that had cancer and got very very sick, or even died. But cancer in kids is different that in adults. So let's remember to pray everyday that Noah's cancer will go away and never come back. I hope that this helps you understand a little bit about what's happening to Noah. But if you have questions, you can always ask your mom and dad, and if they don't know the answer, maybe you could send me a message or even Noah and we can send you a message back!  Have fun, and remember to pray for Noah.  Melissa

Hope this helps a bit with reading some of our story to your children. God hears their prayers too, and its so very important.

Monday, July 16, 2012

one question

It will be 2 weeks on wednesday since we learned that Noah has leukemia. There have been a hundred questions that I have asked since then, but the one question that keeps coming back is 'how am I going to be able to do this?' How? How can I be at home with my three children and give them all that they need? When  one child is sick, even with a simple cold, they need extra attention. Never mind cancer. The thought is overwhelming.

As I drove to Winnipeg this last Friday morning a large truck went flying past me. I just so happened to catch the license plate. All it read was "ABLE". It felt as though God gave me a reminder. He is able. And through him I will be able to handle things. When I got to the hospital, Noah was to get another spinal tap, where they would put him to sleep, take a sample of spinal fluid, and inject the chemo meds into his spinal fluid. As they wheeled us down a few floors, they parked us in a room where Noah could watch the construction site below. There was a crane slowly driving forward. As it moved, it began to reveal the name on it. "ABLE".  I sat there, staring at the letters. I am able. Through God I am able. But I fear I will need alot of reminders.

The journey before us feels forever long. Three plus years of this? I can't imagine. That Friday afternoon, Noah was discharged from the hospital. We have now spent 3 nights at home. It feels really good. He is doing well at home. Healing from his central line, and sore muscles from favoring that side. We even kicked the ball around outside yesterday. He has a difficult time taking his medication. Its all liquid which is hard for him, and it tastes awful. The steroids are affecting his appetite, so he eats constantly. And not snacks, actual meals. It has also affected his mood and emotions. He spent the better part of this morning screaming at me. Its challenging. More than I can even describe.

The support that we have received from family and friends is overwhelming. My heart is completely overjoyed from it all. I feel the prayer. I feel the Lord carrying me through this, as He is Noah and all of us. Sometimes I think that God thinks we are stronger than we are though. I struggle with thoughts like that, and being positive.  - Melissa-

Prayer Requests:
pray for complete and absolute healing for Noah at the end of all this. That the cancer will be gone completely and never return. That Noah will cope well with the many side effects, like losing his hair, moods and emotions, pain and discomfort. That Chris and I will remain strong together. That I will gain hope and be positive. That our other children will pull through this strong. That we will figure out our new normal.

Re-Post from Facebook - July 6, 2012

I was driving home from the Children's Hospital tonite listening to music when I experienced the Spirit in such a powerful way that I began weeping so hard I had to pull over. I could physically feel Him holding me, and I experienced waves of His love washing over me in an incredibly powerful way that I had never felt before in my entire life. Then He said to me, "I know that you feel weak, and you are, but I am stronger than you will ever know. When I close my eyes, the sky grows dark, and when I weep the earth is watered. Just trust me"

wow.......


Saturday, July 14, 2012

Saturday Update

Well today is our first full day at home with our whole family. We were discharged late yesterday afternoon. So far, so good.

We are coping with trying to get Noah to take his meds, which can be a colossal struggle at times. It sure is nice to be home though. It seems almost normal.

He slept like a baby last night, and the steroids are starting to increase his appetite. He talks about food a lot.

Keep praying for us, that he would cooperate with us and take his meds without a fight. That the meds would do what they are supposed to, and strength for Miss and I

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Wednesday, July 11, 2012

One week ago...

Today has been one week since we arrived at Children's Hospital and learned that Noah has leukemia.  There has been no other week in my life that has compared to this one. When we first arrived here, the nurses and doctors told us that we would get use to this, that this would be normal to us soon. I didn't think that was possible. It's amazing what you can get use to. Already Noah has had his second blood transfusion and a platelet transfusion. I have gained much appreciation for people that donate blood.  Its not easy so see him receiving all these procedures. The big one was his port that was put in yesterday. He is in quite a bit of pain today, and still on morphine.

So much uncertainty. One of the nurses came to speak to us today about going home and what that can look like. As much as we all want to go home, it's frightening. We don't have the nurses and doctors here on hand to guide us. We will have to rely on our own judgement. They will always be available for us to call, which is nice. It's just hard to try and imagine what our life will look like. We take it day by day for now.

The side effects can be scary. He will become irritable and short tempered. His sleep will be disturbed. He will want to eat all the time. Nevermind all the effects that can be harmful to him, like fevers and bleeding and so many other things that we will need to know how to control and handle. He will be on medication to subdue nausea and infection. And we will have to be very careful when his blood counts are low. We may not be able to go out with him, and certainly not have anyone visit who is sick in any way.  Its all so overwhelming.

Prayer requests: that his port will heal, and he will be more mobile soon and not in any pain. That his mood will be tolerable for us as parents. That this cancer will be killed and never return. That our other children will cope well with this life now. That our family will grow stronger and closer through this experience. - Melissa -

Day 6

Noah is currently having his 2nd blood transfusion (the first was last Wednesday). He is very pale and weak, and his appetite is not very good right now, although he had a good breakfast this morning.

He is having difficulty moving today because his chest and neck are so sore from his surgery last night, where he had a port put in his chest. It is a semi-permanent IV where meds can go in and blood can come out, without having to stick him with needles all the time. We are also possibly starting to see some bad attitude from him, which is one of the side effects from one of his chemo meds.

It is difficult to watch him like this, as all you want to do is take all his pain on yourself. It is a very helpless, sickly feeling. We are, however, still optimistic that we might be able to come home on Friday.

Continue to pray.......

Tuesday, July 10, 2012

Day 5

Today is Day 5 of treatment for Noah. Already today, there are no leukemia cells in his blood. Although that is amazing, it's also normal. The leukemia cells are being killed by the chemo very quickly. Its amazing to think that it will take 3 more years to kill it all.

Right now, we are waiting to get a port put into his chest. This is like an iv that stays under the skin where he can get some of his chemo meds. They can also draw blood from it. So it makes the process alot 'easier' as they don't have to poke him everytime.

I (mom) am feeling a bit nervous. Its considered surgery, and he will be put under and have a breathing tube put in. He will also need another blood transfusion before the procedure. This is all so overwhelming. I wish I could fast forward to the end of the 3 years and look at my beautiful healthy son and forget this horrible reality. Perhaps I will feel differently later on. I'm sure there are many things that we will learn from this. Things that I already have learned and appreciate.

Chris and I both miss our other children so much. Its hard to be seperated all the time. Something we are not use to. Its hard on Holly too. Coltan is such a happy baby, and so far hasn't forgotten me. We have been honest with Noah and Holly about the cancer, which is a good thing. I can't imagine trying to hide this yet.

Some of our friends and family ask what they can do to help. I don't know. I hope and I am sure that when we do know what we need, you will be there for us at that time. 3 years is a long time to get through this. And if I don't know what I need on day 5, I may know on day 365. I still feel like I am dreaming, and this isn't our life. That my boy isn't laying in the hospital bed, filled with cancer. That I am not having to learn what platelets mean, and neutrophils and white and red blood cells do. That I didn't have to know what the numbers all mean. I wish all I had to worry about was what to do today to keep my kids busy during the summer. Something I stressed about just 7 days ago. Seems so ridiculous now.

Prayer: Please pray that the port will go in smoothly. That Chris and I will know how to care for it properly. That Noah can come home soon. That he doesn't have any bad reactions to blood or meds. That we all remain positive. That this cancer will leave him completely and never return. That our other children stay healthy. That the side effects will not be horrible.

Hello from Noah


video

Monday, July 9, 2012

A Father's Perspective

I went to Los Angeles 4 months ago to attend a Krav Maga self-defense instructor bootcamp. It was the most grueling, exhausting, and difficult thing I have ever done in my life, both mentally, physically, and spiritually.

Until Now

I even got a tattoo to commemorate the occasion, and to help me remember that I am much stronger and more capable than I often think I am.

I catch myself staring at that tattoo much more frequently these days.......

Sunday, July 8, 2012

Noah's Diagnosis

On July 4, 2012 we brought Noah to Children's Hospital because he was pale and not recovering well from strep throat which he had the previous week. We assumed it was just the strep that wasn't going away, little did we know it was actually Leukemia.

Even though it was not totally confirmed that this is what Noah had, the ER doctor had a pretty good idea, and figured that the doctors in Steinbach suspected Leukemia as well. Which was why they sent us to Children's.

This brings us to the moment, where the doctor comes into the room and tells you that what our son most likely has is cancer. Wishing that we could just pretend that we didn't just hear that, instead we are plunged into this horrific reality.

We are brought up to our room which we will likely spend the next 10 days or so in. Noah is excited because it has a PS3 in it:)  That night Noah received a blood transfusion, and alot of fluids. He got an xray as well.

The following day Noah had a bone marrow extraction and a lumbar puncture to determine how much Leukemia he has. His bones and blood contain nearly 100% of leukemia. Which explains the paleness, lethargy and bone aches.

From there we start Chemotherapy. A shot of chemo was already injected during the LP because that is where leukemia likes to hide, in the spinal fluid. We later learned that Noah does not have any leukemia in his spinal fluid, but will continue to get shots there to be safe.

The bone marrow was full of leukemia. Leukemia is cancer of the bone and blood, therefore, Noah has it everywhere.

From there we go day by day regarding chemo. Each day is numbered, today is DAY 3. On day 29, Noah will have another bone marrow extraction and they expect to see less that 1% of leukemia in the bone. Yes, you read that right. The first month is intensive. After that first month, it will take 3-3.5 years to kill the last 1% of leukemia. This does not mean it will be easy, even though the amount is small.

The side effects of chemo seem outrageous. And it feels like we are pumping him full of chemicals that will change him into someone else. We should start to see them soon. The big one that everyone asks is will he lose his hair? Yes, in about 2 weeks. And it may stay like that for the remainder of the 3 years.

Noah is ok. He knows he has cancer, so please don't feel like you can't say the 'c' word. Holly also knows he has cancer. He is sad at times because we were suppose to go camping, not stay in the hospital. Otherwise, he feels optimistic. I asked him if he thought he was going to die, and he said "no".

Chris and I are hanging in there. Its hard. More that I can even describe. Your prayers and willingness to help us does not go unnoticed. We appreciate all that you are doing for us.