tag:blogger.com,1999:blog-71687770731655458752024-03-14T02:56:09.376-07:00Noah's JourneyChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-7168777073165545875.post-61160370370057694402015-10-27T18:28:00.000-07:002015-10-27T18:28:04.110-07:00From Hockey Mom to Cancer MomThis morning we joined the local radio station for an interview. They have asked me several times to come in and share our story and Noah's diagnosis with them. But this time was different. They asked Noah to speak as well. A week prior, I was approached by a friend and she asked me if Noah would like to drop the puck at the Piston's game. They were going "Pink in the rink" and were auctioning off jerseys and donating the money to The Canadian Cancer Society, and I believe Cancer Care Manitoba. I asked Noah and he said he would really like to do that.<br />
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The radio station then called and surprised us with a couple of the Piston's players at the station, and then also had breakfast with us. What an honor! But during the interview, one of the players mentioned how inspirational it was to have Noah there. To have him drop the puck and be able to visit them in the locker room. His words really struck me. I knew that Noah's story was an inspiration to many, but I think it was that moment when a lot of emotions that I was feeling over the last few years became clear. I looked at these young men, these hockey players, and realized what my son was doing for them. For their team. He was providing them fuel, inspiration for a big home game. But more than that, I believe he was providing them with inspiration that will last a life time.<br />
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I remember when we decided to put Noah into hockey. He was 6. He had never skated, and I sat and watched with tears in my eyes as I seen how many times he fell during that first practice. I lost count. I seen him get up every time and try again. I thought to myself as I sat there, he's going to come in and say he was done, that he hated it. That he never wanted to do that again. When he got off the ice and made his way to me, I asked him how it was. He looked at me with the biggest smile on his face and said he loved it! I was shocked. That whole year he tried so hard. He was never big into chasing the puck, but he worked really hard on his skating. The hockey season came to a close, and we excitedly planned when Noah would start again in Fall. Little did we know, cancer was growing inside his body and only a few months later would show itself. But, being the fighter that he is, he started school on time, and he joined the hockey team as well. The support that we felt from that hockey family, was unbelievable. But Noah's body was just too weak from the chemo, and it wasn't long into the season and he was done. He never returned to the ice again.<br />
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This morning, as I looked at these big, strong hockey players, I mourned a little for my son. Because we do that, us cancer parents. And those mom's and dad's of angel children, I mean no disrespect. Because the mourning that you do for your lost children does not compare with what I'm saying. I mourned for my child that I knew before cancer. The child that I carried in my womb. Whose hopes and dreams I envisioned every time I felt a kick in my ribs. Whose future I imagined. What will he be? What clique will he fall into? What will he excel at? I mourned for the child I knew, before cancer took away some of those things. And it's ok. It's all a part of this process. No, he's not a Piston's player. Not even a rec player. And I'm ok with that. But that has taken me a good 3 years to see. To be ok with lost dreams, but seeing things in a different light. I'm ok with my son being the kid with cancer who inspires others. Not because this is what I would have chosen, but because God has given us grace, and wisdom, and perseverance. And directed our path, every single step of the way.<br />
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How honored I felt this morning to be the mother of that boy. And how honored I will feel tomorrow night as he stands before hundreds of people and drops a puck. No, he's not the guy going after that puck, not anymore, maybe never was. But I'm so proud of who he is, and of what he's gone through. I'm no longer a hockey mom. I am a cancer mom, and I couldn't be both. And I'm totally ok with that.<br />
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So I will proudly share my Noah's story. I will share it as many times as I need to, to bring awareness. Inspiration. Love. And many other beautiful things, that came from this horrible disease. This is his path, his life.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com4tag:blogger.com,1999:blog-7168777073165545875.post-64360480902669526712015-08-28T18:57:00.000-07:002015-08-28T18:57:44.045-07:00Let Us Never ForgetToday, Friday August 28, 2015 marks the very last dose of steroids Noah is scheduled to take for his treatment for leukemia. And we are rejoicing, believe me. And even though we want nothing more than to put this behind us, we must never forget what he has gone through. I truly believe he will be a stronger person for going through this, as we as a family will be stronger as well. But I want to be able to read this back one day and remember the hell that it was. Here is kind of a list if you will of things that we have had to give up or change or deal with because of chemo, specifically steroids.<br />
-tonight is a beautiful night. I wanted nothing more than to sit by the fire with my family. Didn't happen. Last day of 5 straight days of steroids equals miserable Noah.<br />
-Early bed times. Not always fun on lovely summer evenings.<br />
-missed vacations.<br />
-missed weddings<br />
-missed birthday parties (Noah's best friend to name at least one)<br />
-screaming. raging fits<br />
-swearing, hate filled comments from a 10 year old is not cool<br />
-after school snacks, because of fasting every day, it could never happen<br />
-his extreme irritability and genuine hatred towards Holly<br />
-his aching, tired, sore muscles<br />
-his belly aches<br />
-the second loss of hair<br />
-not being able to get together with other families for several reasons. Noah was often too tired, or if there were sick children in a group it wasn't safe for him.<br />
-nothing pleased Noah with food, nothing tasted good<br />
-giving up sports, just too tired at first, then a complete loss of interest<br />
-when the steroids were really in full swing, Noah would say he wanted to kill himself. It was terrifying.<br />
-not being able to sleep<br />
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With all this being said, I should be over joyed that today was the last time he should ever have to take steroids to beat cancer. But instead, or perhaps more overpowering is my fear. Fear of relapse. Fear that this is not the end. Perhaps it was just the beginning. Please God no. Don't let it come back. Not ever. Please. Please. Please.<br />
And this is what cancer can do. It creates this image of us "strong" families that everyone says we are. But let me tell you, I don't think I'm speaking wrongly for others in our shoes when I say we feel anything but strong. Cancer can be debilitating. It wears you down and can make you doubt everything you knew to be true. The strongness that you see, is actually survival. And I see it in every family I meet. If I didn't believe in God, there would be no way I could survive the way I/we do. Every day we have, although some are hard I give thanks for. And I think God gives me grace.<br />
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Grace has been on my mind a lot lately.<br />
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Anyway, the day is ending. Noah is already up in my bed as he isn't feeling good and can't sleep. Which makes for a long night ahead. Same as last night. Most likely tomorrow as well. But even as I type this I am reminded of the first couple months of treatment after Noah was diagnosed. He was up in the night several times to eat, and because he couldn't sleep. Plus, I had a 4 month old that was also up a couple times to eat. See....it got easier:) Grace.<br />
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Goodnight all. Thank you for your support. The countdown begins to Sept 11, where Noah will then take his last chemo pills...hopefully forever.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-88409199417888230332015-08-24T19:48:00.002-07:002015-08-24T19:48:33.340-07:00A Real Nice SurpriseI feel very bad that it has been so long since I updated our blog. But what can I say, our life is busy! I titled our blog today as "a real nice surprise" for a few reasons. First of all, we did receive a surprise today. Not sure if its the weather feeling cooler out but I just had The National Lampoon's Christmas Vacation scene of Randy Quaid with his big __*!#^!__ eating grin on his face (kinda like I was today) telling Clark that it was a real nice surprise when he offered to pay for christmas gifts for his family. Today our surprise was that it was the last day Noah will receive IV chemo (Vincristine) through his port, and the last week of steroids (Prednisone). I always knew Sept 11 was our end of chemo date, and still is for oral chemo daily here at home. But I thought he would be receiving another IV round and steroid pulse in September yet. I felt shocked when the oncologist said nope, today is the last day. And proceeded to make a requisition for surgery to have Noah's port removed, likely in October.<br />
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It felt as if I was driving a speeding wagon being pulled by horses and I was trying to rein them in. Digging my heals in the dirt, saying wait, this is too fast too soon! Can you believe that?? When Noah was first diagnosed in July of 2012, we seen the treatment plan and couldn't imagine how we would ever make it to this mark.Noah was just 7, Holly 4 and Coltan only 4 months. And now here we are, and I find myself afraid. Afraid of what life will look like without daily chemo, monthly chemo, and counts. Afraid that once he stops taking chemo, the cancer will return. I don't know how to worry normally. We have been on high alert for over 3 years now, how can we go to being normal? I just don't know how to do it.<br />
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Needless to say, I felt emotional today. In fact, I made the pharmacist tear up as she seen me tear up as we were discussing the last doses of chemo and how we should celebrate it. I took a lot of pics to today as he was receiving his last port access for chemo.The last time his port was accessed. I still don't believe it I think. And to already be making plans to have it removed....just seems crazy. I feel like everyone is telling me to be excited and happy, and move on and get back to normal. But it's impossible.<br />
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It's never easy going to cancer care. Never easy to watch your child receive chemo that is so toxic. To see their little bodies dwindling at times. And its never easy to sit there and watch a new family walk through the doors. With that look on their face, like a deer in headlights. Just going through the motions. That's the part of this cancer world that I never expected. To meet all these families just like ours. I met a new family today. And the hardest part was knowing that today was my son's last chemo day and not their son's. Noah has the "good" cancer. And it's hard to meet other families that aren't so lucky. This cancer world brings you through the ringer.<br />
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For a long time I was sick and tired of being the family who teaches every other family to be thankful for what they have, you know? Tired of being the example. But today I think was the first time that I realized that I had been embracing that role for awhile now. In my work, in my friends and family. That I was ok with people seeing our family for what it was, which was not always pretty. And feeling at peace that this was our life.<br />
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Today felt very odd as we walked out of cancer care. Each step I took farther and farther away from the clinic, it hit me harder and harder that this was his last time. We will be back....often, but this was his last IV chemo. I just can't believe it.<br />
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As far as how our family has been doing this last year, its been rough. The first steroid Noah was on (dexamethasone) was extremely harsh as it built up in his body. He would rage. And eventually started saying he wanted to kill himself. So, we had it switched which provided some relief for a few months, but we found the last couple of months hard again. So, praise the Lord, 4 more days! Noah's hair also started falling out again about 2 weeks ago. I thought he would lose it all, but it seems to just have thinned a lot. You can see his scalp in some areas, and it feels dry and straw like. Which brings me back to the first month he was diagnosed. Which in turn creates feelings of fear and relapse thoughts. But he has otherwise acted like a normal 10 year old boy. Swimming, biking, going to camp. A really great summer in my books.<br />
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As for Holly, we received a letter from her counselor/social worker that said they didn't believe she needed any further counseling. Chris and I both feel like she does. She's often upset at home, throwing countless fits and tantrums about anything and everything. She seems very unhappy. She screams in her sleep, often about Noah and saying to stop it. We think its because he has been so hard on her these last 3 years. So she definitely needs some counseling to work through these issues. But she's looking forward to grade 2, and piano lessons and hopefully gymnastics as well.<br />
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Our Coltan is our light. That boy has a sweet spot in both his brother and sister's heart that is so sweet to see. He's hilarious and so cute, and is the life of the party. His lung is holding up for now, and there is no plans made yet to remove the malformed part with cysts on it. However, this weighs very heavy on my heart and mind. I look at that sweet boy and I have a great deal of fear for his health too. The what if's take over sometimes and the weight of our sick children feels too much to bear. But as per our usual, we push on and Coltan is very excited to be attending pre-school this fall.<br />
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Please continue to pray for our family. Without that, I know we would not feel as supported and loved as we do. We have put all our trust in God, and know that His plan is what's our destiny. But this doesn't take away all the feelings of fear and the emotions that come with living our life. So thank you to all who continue to pray and support our family in the many ways that you do. We love you.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-42791421340362527612014-09-14T20:28:00.004-07:002014-09-14T20:28:55.552-07:00Summer 2014Wow, I cannot believe that May was my last time I wrote on here! I have been meaning to. But I just havn't. Sometimes its easier not to write. But I also know it does me a great deal of good, So, summer. Has came and went so fast. In fact, it feels like we havnt had a summer at all. I dont feel ready for Fall. Not in the least bit. Fall time has been a hard time for me since grandma passed away 5 years ago. She passed away in January, 2009, but Fall is when I think I remember her the most. I remember the way her house smelled with canning beets and pickles. I remember the warmth of it as I walked in the entrance. I miss her so much. This is now the second Fall that we are going into without my great grandma now too. I miss her so much as well. I miss that trailer she lived in. As Halloween approaches, I think of her often. Her apples that she handed out and the toffee candy that nobody liked! I remember her stale chips that she would offer every time I walked into her house. Which was often because she lived right next door. I dont think people realize how close of a family we were. I am also missing my great Aunt, who passed away almost a year ago. She and my grandma were sisters. She was also the daughter in law to my great grandma. I have often thought of her this season. How many times I would call her with canning questions and she would always help me out. Oh how I miss these women, I feel this Fall has been extra hard.<br />
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And with Fall comes the start of school. So far so good. Noah has a teacher whom he loves, and Holly does too. It's been different having just Coltan with me at home all day. He misses them.<br />
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Noah had chemo last Monday, so a week ago tomorrow. He has been on steroids all week and its been rough to handle. He is so awful to Holly. He says horrible things to her, and it hurts my heart to hear it and to see her take it. Some days I feel convince that she will grow up to absolutely hate him. I hate this cancer for that. For turning Noah into this horrible mean brother. We just are out of ideas on how to make him stop this behavior. I contacted the the oncology office here in town. They do not have a program for kids, but the oncology counselor has agreed to meet with Holly and Noah and try to help us in some way. I am praying this works. I feel like we are never happy. We certainly aren't normal. I just cannot wait until this chemo is over with.<br />
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Even though we will celebrate the last day of chemo, I know that it doesn't end there. Many more visits to cancer care for a long time will follow. Plus the fear of it returning. You cant tell a cancer mom to not think like that, or not to worry. Because we simply cannot. We see it every day. Kids relapse. And to think it cant happen to us would be naive. I never thought I would have a child with cancer, and here we are. I dont want to go into anything with our eyes shut. <br />
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At the end of the month we are attending a family cancer camp that the Candlelighters puts on for families like ours. Hopefully we will meet some other families like ours and not feel so alone. And the kids are really looking forward to staying in a hotel and swimming:)<br />
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As for Coltan, the surgeon had originally wanted to do surgery this September. The CT showed that one of the cysts on his lung had slightly grown. But upon meeting with him and discussing it further, he didn't think we needed to rush it. And Chris and I felt relieved because we didn't feel ready to send another child of ours into the OR. So for now we monitor it and put the surgery on the back burner for now. Unless a miracle occurs, he will need surgery to have part of his lung removed. This gives us a bit more time to pray for a miracle. Because the thought of sending Coltan in for surgery is too much. Some days its all too much.<br />
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There have been alot of changes here. Chris has recently quit his job at the insurance place. He now does full time personal training and teaching self defense...his all time dream. I have been very busy with my doula work, and am loving every minute of it. To have a job so rewarding is a true blessing. I recently seen a doctor speaking on fb about delivering babies. He said that for those moments that you are there, witnessing a life be born, brought into this world, it makes you forget about all the garbage going on outside those doors and even in your own life. It's so true.<br />
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So this is where we are. Still keeping on. Chemo every day. Once a month in the city, and put to sleep ever 12 weeks for chemo in the spine. It has become our normal. But that doesn't mean that it's always easy. It doesn't mean that I dont cry before bed, and get down on my knees and pray that God will save my children. Because I do. More times than I will admit. Sometimes I doubt whether its working. Whether my prayers are being heard. And then something happens, and God reminds me that He hears me. I got a message from a lady that went to our church awhile ago. She said that her small group prays for us continually. What a blessing that was to hear. I know God is with us I do. We are a work in progress though.<br />
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For now I have a few prayer requests. Holly came down with a cold that she is recovering from but it has passed to Coltan. He is coughing so bad, and I am worried its going to get into his bad lung and we will need antibiotics for him. Noah started to come down with it too, and that combined with the steroid effects is draining him. Please pray that these colds will disappear. That they will heal from them and be 'healthy' again. I am just starting to learn how to use essential oils, so I have been putting that on them. But I am still worried that I will end up bringing one or both of my boys into the ER this week. I also have a birth to attend and so its all a bit overwhelming.<br />
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Please pray that Noah will have more grace towards Holly. And that Coltan can witness a good loving relationship between his siblings and learn that instead of what he has been seeing and hearing. Pray that Chris and I continue to parent our children well. Make wise decisions and have patience and grace and understanding with them all.<br />
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Pray something big. Pray that cancer will become non existent. Every day I hear of someone else being diagnosed with it. Its awful.<br />
Thank you all who do pray and support us. We feel it.<br />
Melissa<br />
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ps. we can now officially say Noah has less than 1 more year to go!!<div>
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Chris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-20222469557203234812014-05-26T12:46:00.000-07:002014-05-26T12:46:25.038-07:00May 2014Well it's been awhile since I updated on here, sorry about that! Since our trip, life has gotten back to normal pretty quickly. April came and went, and even though we thought a March vacation was too late in the year, there was still plenty of winter left when we got back home. It was still snowing at the beginning of the month. But now summer is here, and the kids are getting anxious to get out of school and start having some camping fun.<br />
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Again, we have been so blessed that Noah could attend his grade 3 school year. For awhile I was getting so frustrated because it seemed every week there was another chicken pox outbreak that we had to keep our eyes open for. But he has been really healthy, and only misses chemo days.<br />
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Noah's last chemo was on Tuesday May 20. He started the steroids for 5 days then as well. I know I said this before, but it just keeps hitting him harder and harder each month. He can go from raging mad to sobbing in a puddle on the floor in minutes. Again, his anger and rage is directed at Holly. For whatever reason, she gets the the brunt of it. We are starting to notice that the day or two after Noah comes off the steroids, then Holly starts to act up. I think its from the stress of the week. She feels it too, and it's hard to ignore Noah when he gets like that. It's during steroid weeks that Chris and I look at each other and wonder how we can possibly get through more than a year more of this.<br />
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Some days the reality of having a child with cancer is unbearable. If I let the 'what ifs" get to me, my anxiety goes through the roof. It's easy to say to someone not to think of the what ifs. Or to not worry. But it's quite another to do it. This is our life. I can't escape the stress or reality of it. It's always there. The chemo is sitting right there in my coffee cup cupboard. The scars on Noah's chest will always be there to remind us of what he is going through. This is our life, and some weeks are harder than others.<br />
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And some weeks, such as last week are crazier. Noah had chemo Tuesday, and Coltan had his CT scan Friday. Coltan did so well. He had to fast and the test was late, so it made it even harder for him. But he did so amazing. I held him in my arms as the anesthesiologist put the gas mask over his face. He screamed and cried and thrashed around trying to get it off. I knew this was what he was going to do so I had prayed all the way to the city for God to give me the strength to hold him and not cry as I sang to him to calm him down. It only took less than a minute and he was asleep, but then I had to lay him on the bed. It's a different sleep than when he falls asleep. His mouth was gaping open and his body was totally limp. It was really hard to see him like that, and then to immediately leave the room, and trust his life into the hands of people I only just met minutes before.<br />
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He was under for about half an hour, then woke up before they would let me get to him. He was a screaming mess when I seen him and he didn't know what he wanted or needed. He was also starving. But it didn't take long before he was allowed to eat and drink and then he was feeling much better. Although he did try to rip his IV out! <br />
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Now we wait. The surgeon should hopefully call this week with the results. This should determine if he wants to operate on Coltan's lung and remove the part that has cysts and emphysema. Please pray that he will not need surgery. Surgery is so hard for me to handle. I hate seeing my kids brought to the OR. It's not fun. And of course, not fun for them.<br />
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But like I said, this week was extra crazy. It was also enlightening. Sometimes things just seem to line up, or in some crazy way make sense and confirm that God is real and taking care of us. I seen that in a few different ways lately. Ways that were unexpected. 4 years ago last week I lost our third baby. A miscarriage that landed me in the OR. Two years later I met a friend who's little boy had been diagnosed with a brain tumor. When he passed away just over a year ago, I took note of his birthday. It was the same day that I had lost my baby. So while I was losing my baby, she was bringing hers into this world. And the day after Coltan turned 1, she held her boy as he took his last breaths, and passed away. How crazy this life is. How strong we are! Only by the grace of God I tell you. Only by his grace.<br />
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Despite all this craziness this week. I felt unusually at peace and ease. I've been taking all kinds of supplements for my anxiety surrounding my kids and their medical needs, and whether its the supplements, or just the placebo affect, it's working. I also know there are so many people that pray for us. And I know in my heart that that is what get's us through these hard patches.<br />
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Thank you all who hold us in your hearts and prayers. We appreciate it more that you know! Please continue to pray for Noah, as he fights this cancer. That he will beat it. And for Holly as she struggles to fit in with her sick brothers. For Coltan, although he appears healthy, that surgery is not needed. And for Chris and I as we continue to parent our children as best we know how. That they wont grow up to hate us:) I'm kidding, kind of...<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-51492362526843919712014-03-24T18:04:00.000-07:002014-03-24T18:04:32.325-07:00Chemo and a blessingToday Noah had chemo. We were suppose to be at HSC for 9am... and we actually arrived at 9:15! Not too bad for us:) It was a bit longer than usual, the clinic was busy. So as we waited, I noticed another mom sitting on the couches across from me. I had seen her several times throughout the better half of the last year as she brought her son in for chemo. They were even admitted the same time Noah was in November. But we had never had the chance to say hello or introduce ourselves.<br />
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Her son is a couple years younger than Noah. And he was having a rough day. He was upset, yelling at his mom, not wanting to go in for chemo, all very familiar to me. As he was freaking out on his mom across from me, I tried to not look in their direction (I know how hard it is to deal with a child like this and then have people stare at you). She was trying to calm him down, and then I heard a slap sound. I assumed she slapped him on the hand (yes we have to still discipline our sick children) but it could have very well been him slapping her in the face. He then ran off to the corner and sat very grumpily.<br />
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After a minute or so, I looked up at her. I asked "is he on steroids?" because I know very well how kids on steroids act. "No" she said, and mentioned another chemo drug that I hadn't heard of. I asked her if he had leukemia like Noah. She shook her head no, and then covered her face and began to cry. I knew that there was nothing I could say to comfort her, so I got up and sat next to her and rubbed her back while her tears flowed.<br />
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She told me he had a different kind of cancer, affecting his nerves. And that he wasn't responding to chemo anymore. They were trying different drugs at this point.<br />
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We continued to chat, but during clinic visits, you get a couple minutes to chat with someone and then either you or they are whisked off for a test or chemo or check up. So that was all that I learned of her that day. That her son is not responding to chemo, and they are going to try for another 5 months or so. And yet, we are connected. It's a feeling I have felt with other mothers sitting in the clinic. It's a bond that we all share. We all gave birth to children that have cancer. And we share each other's pain.<br />
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Yes, my son has cancer. But he has a cancer that they know soooo much about. They know what drugs to give and when. And for how long. And that the chances of survival are pretty good. And I am so very thankful for that. There is so much unknown in this cancer journey. So much.<br />
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Count your blessing people. Count them one by one. I sure am tonight.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-52246640168098531232014-03-20T10:03:00.000-07:002014-03-20T10:03:07.109-07:00Florida 2014We made it! Our trip was a success! But oh the worry we went through to get there.I had so many people praying for me, and I truly felt it. The plane rides were the hardest for me because of Coltan's lung. I really struggled to believe that he was going to be ok. I had timed his breaths before we left so that I could tell if he was breathing faster on the plane and that would indicate that his lung was giving him trouble. But all was well. All three kids did amazing on the way there and even on the way back, and on the way back we landed at 12:30am, by the time we got home, got the kids into bed it was almost 3am. So we all rested the next day and now they are back to school!<br />
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But enough about the travelling, now about our trip! There are no words to describe Give Kids The World. It is the most amazing place I have ever seen. What they do for families with sick children is truly amazing. Our entire stay there was paid for. We had a villa all to ourselves, and had more food than we needed. Everyday when we got back from what we were doing that day there were presents left on the table for the kids. It was a good thing I brought an extra suitcase because we filled it with toys on the way home!<br />
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The village is so beautiful. The villas look like fairy tale houses on the outside, so beautiful. All the grounds are perfectly manicured and the buildings all look like they are out of a story book. It was so fun to just be there and walk around, taking it all in. So often I had tears in my eyes as we walked around because I just could not believe how blessed we were to be able to stay there.<br />
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The volunteers are so friendly and helpful. They do anything for you and are happy to do it. Here are a few pics of what we experienced at GKTW.<br />
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This is our villa. Each Villa has the family's name on it, and it truly feels like a home.</div>
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Here is another pic of our villa. They are all side by sides, so it is only half of what it looks like here. The walls were a little thin, so I felt bad for the family next door as Coltan has quite the voice!</div>
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Here are the kids posing on the porch of the villa.</div>
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Chris was very used to ordering pizza every night. We aren't used to being able to order pizza for delivery and have it delivered in minutes...and free:)</div>
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And yes that's the crib in the kitchen. That's what happens when you put wheels on a crib and hand it over to a 2 year old!</div>
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This was the kids bathroom. It was HUGE!</div>
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This was the kids shower, it was also huge! All 5 of us could have easily fit into it!</div>
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This was the jetted tub in the kids bathroom.</div>
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This is where Noah and Holly slept, we tried Coltan in there with them but that was clearly not going to work! So we moved the crib into our room.</div>
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This is our room. </div>
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This was our bathroom.</div>
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Here was the living room, this is very clean, must have been day 1!</div>
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This tree was part of the castle at the village. It snored all day:) When you are in the castle, you can go inside the tree. It's all lit up inside, very beautiful.</div>
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This was the view from our villa. There was a huge pond with a fountain. </div>
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Here is the Merry Go Round located right outside the restaurant. The kids rode it frequently!</div>
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Here is the Gingerbread House. It's the restaurant in the village.</div>
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Here is the castle in the village. Inside it is filled with stars that each wish child gets to put their name on. The walls and ceilings are filled with them. It really puts it into perspective how many sick children have been there. It was very emotional for me to be in there. To know my son's name is in that castle. To see my friend's little boys star and know that he is no longer here. It was hard.</div>
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Here is Noah writing his name on his star. </div>
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Now for some pics of the adventures we went on! We arrived late Monday, so Tuesday was our first day. We decided to go to Aquatica, which is the water park at Seaworld. </div>
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Our first family photo of the trip</div>
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Coltan was sooo good in his stroller that week. I think he was entertained with the many things just to see everywhere.</div>
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Holly LOVED anything fast and crazy. Mom and dad thought this was FAR too dangerous for her to go on, this was just the beginning! </div>
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Here they go marching up the slide...again</div>
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Dad and Noah taking a break. We parked our stuff in the sand at the wave pool.</div>
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Coltan loved the sand</div>
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So did Hol</div>
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Wednesday we went to Seaword. It was a LONG day, but great.</div>
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This is the Atlantis ride behind them. The questions about Atlantis are still coming in from Noah. </div>
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I think Holly would still be dragging Chris on this ride if we let her!</div>
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This is what happens when Grandpa Friesen gets rooked into too many rides!</div>
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Thursday we spent at Legoland. This was the place that Noah wanted to see the most.</div>
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It was so amazing that all these things were made out of lego! This elephant was huge!</div>
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This whole car was lego</div>
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Holly and Chris on another roller coaster. That girl is a rider for sure.</div>
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These miniatures were really cool.</div>
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Thursday also was Coltan's 2nd birthday. At the village they celebrate Christmas EVERY Thursday so Coltan was able to celebrate Christmas and his birthday on the same day:) He also got double the presents!</div>
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The village had his cake ready and waiting for him.</div>
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There was also a balloon waiting outside our front door that morning. It was a special day for him.</div>
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Friday we spent the day at the village. We went to the water park there and tried to 'rest' a bit for the last leg of our trip. </div>
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Saturday we went to Magic Kingdom. It was HUGE. </div>
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This castle was so beautiful.</div>
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We went through the Swiss Family Robinson life size tree house. The kids love this movie and thought walking through the tree house itself was very neat!</div>
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We went on an Amazon Cruise, and seen some very real looking animals. But these were not real.</div>
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Although they looked it!</div>
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The elephants looked really real.</div>
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This was a HUGE steam boat that went by often. Coltan loved it.</div>
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This was a run away train roller coaster. The kids loved it, especially Holly.</div>
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All the buildings were so amazing. We went on a Peter Pan ride that was really cool. It was like you were flying above the city with him.</div>
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Holly was able to meet Rapunzel. </div>
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And Snow White</div>
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And Sunday was our last full day. We spent it at Animal Kingdom. I loved Animal Kingdom.</div>
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Our first stop...Africa</div>
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This was a highlight for all of us. We went on a real safari and seen these amazing animals up close, no fences!</div>
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This was a baby giraffe, so precious.</div>
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The giraffes were very close to us</div>
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This baby elephant was a ways off, but still spectacular.</div>
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The rhinos were bigger than I thought!</div>
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This guy was very close. Kinda scary, when we looped around him, his mate was sleeping behind him. Very neat to see.</div>
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We were also able to see Gorillas in Asia. Although these guys were behind the glass.</div>
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All the grandparents posing in front of Mt. Everest.</div>
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Chris and Holly and Albert did this roller coaster.</div>
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And our Noah. The whole reason for this amazing trip:) I hope you always remember this my son. It was amazing! Let's not wait too long to go back:)</div>
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And that's it. A nice break in treatment. Noah is about half done. It was so nice to get away from our regular life for a bit. But now that we are home, it's back to normal pretty fast. Noah has chemo on Monday, and starting the steroids again. The next 2 weeks will be rougher than the last that's for sure. But this break was welcomed and will hopefully help us get through the next year and a half.</div>
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Thank you to all who prayed for us. Truly. Thank you.</div>
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<br />Chris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-50841765628728089172014-03-07T18:51:00.000-08:002014-03-07T18:51:25.783-08:00FloridaWell 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.<br />
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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!<br />
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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.<br />
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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.<br />
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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.<br />
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Thank you all for your love and support. We couldnt make it without it.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-84619552514952816042014-02-15T08:48:00.001-08:002014-02-15T08:48:20.174-08:00SeriouslyWe 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.<br />
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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.<br />
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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.<br />
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We are so tired of doctors, and hospitals, and sickness, and the possibility of sickness. Its neverending. Ever.<br />
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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.<br />
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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.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com2tag:blogger.com,1999:blog-7168777073165545875.post-67386145717870355842014-02-05T19:29:00.000-08:002014-02-05T19:29:26.568-08:00What the surgeon saidI 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.<br />
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WAIT, WHAT??<br />
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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.<br />
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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?<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Thanks for your prayer, it gets us through our days.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-55875363754277630042014-02-03T09:54:00.001-08:002014-02-03T09:54:59.486-08:00Heading out the doorJust 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.<br />
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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.<br />
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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:<br />
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Psalm 5:11-12<br />
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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.<br />
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It seems as though the 'umbrella' that I feel is my shield. My protection. Keeping the faith.<br />
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Thank you for your prayers and encouragement.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-70390251577050753142014-01-31T18:40:00.001-08:002014-01-31T18:40:11.123-08:00A Set BackWe 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com2tag:blogger.com,1999:blog-7168777073165545875.post-7337660236754403132013-12-31T21:56:00.000-08:002013-12-31T21:56:29.530-08:00Day 545Today 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.<br />
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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.<br />
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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.<br />
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But we have another year under our belt, and there's no other option but to press on. Count our blessings and press on.<br />
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Happy New Year everyone, I encourage you all to count your blessings. One by one.<br />
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Love<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-80896481196991570252013-11-26T18:57:00.000-08:002013-11-26T18:57:33.290-08:00A story to shareI 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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:)<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-28390911255245991252013-11-25T19:08:00.002-08:002013-11-25T19:08:33.497-08:00Fever #1Noah 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-30111112672288822002013-10-21T18:22:00.001-07:002013-10-21T18:22:33.620-07:00A ReminderI 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.<br />
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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.<br />
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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.<br />
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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.<br />
thank you all, MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-22636331169756172572013-09-17T12:52:00.000-07:002013-09-17T12:52:53.146-07:00The start of schoolAnother 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com2tag:blogger.com,1999:blog-7168777073165545875.post-48042912916542241062013-08-09T07:05:00.000-07:002013-08-09T07:05:04.375-07:00Our summer so farI started this summer feeling nervous. It was the anniversary marking 1 year for Noah's diagnosis of cancer, and I wondered how our summer would go compared to last year. This year I didn't feel that stir crazy feeling that I did the year before. Wondering what I was going to do to keep my kids occupied all summer. This summer, I just feel blessed to have them all at home with me. Yes, they are driving me insane with their fighting, as its gotten really bad. But I remind myself daily that at least this year Noah is not sitting in a hospital bed and having his body be poked constantly, no surgeries and no adjustments to chemo. He's an old pro this summer.<br />
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Things have been going so well for him physically. Then we get a reminder that he still has cancer. He was hit with a really bad mouth sore over a week ago. He has had them before, but this was just huge. It was on his top lip and it looked as though someone punched him hard. It was swollen and red and very painful. He is still on the antibiotic for a couple more days and a cream as well. The cream cost just over $100.00 for about an ounce, I just about fell over when I heard that.<br />
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Noah has a check up on Monday Aug 12, so hopefully his oncologist will ok him for chemo. He is scheduled to have a spinal on Wednesday Aug 14. This is where he is put to sleep and the chemo is injected into his spine. Now, he only goes for that every 12 weeks.<br />
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Emotionally, things are difficult for Noah. Which in turn makes it difficult for everyone. Noah and Holly fight constantly, and I am out of ideas on how to control this. His psychiatrist is on holidays all summer long, so we have no advice in that regard. It's frustrating, and I never pictured my kids acting this way to each other. They can be so hurtful and it breaks my heart to hear them. And as they fight, Coltan watches them and is learning their terrible behavior.<br />
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So yes, this summer we are all at home, not in the hospital and together. But we are still fighting. Fighting to be a normal family, when we just aren't. Fighting with each other. Trying to figure out how to teach our kids to just all get along. Sometimes I think Noah should just know how to be thankful, know how to appreciate what he has. But he doesn't. We need to teach him that, even when it seems like it should just be an obvious natural reaction because of what he has gone through and faced.<br />
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Please continue to keep us in your prayers. We need them, and we feel them.<br />
MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-4219734467397421742013-07-04T12:37:00.000-07:002013-07-04T12:37:58.119-07:00A YearThis week has been filled with emotion. Today, July 4, one year ago was the day we found out Noah had cancer. What a life changing moment that was. I can remember that evening so clearly. And I have been reminded of it often this week as today approached.<br />
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I remember the call we got from the nurse telling us to head to Children's immediately. We were grocery shopping in Superstore. We were planning on leaving for our annual family camping trip in 2 days. I was standing in the chip isle. I remember arriving at the hospital, sitting in the Children's emergency waiting area. Then they brought us to an isolation room. We still didn't think it was anything major, they obviously knew otherwise. I remember the doctor apologizing that things were taking so long, and Chris and I looking at each other thinking, we have only been waiting a little while. Oh how our lives were about to change in a matter of minutes, and we had no idea.<br />
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I think that perhaps this week has been hard because it is almost mirroring what this week was last year. Packing the camper, getting ready to leave for our annual family camping trip tomorrow. So many things are the same, yet in a completely different way. This time, I am feeling nervous that something will happen to prevent us from leaving again. Noah was so devastated last year when we couldn't go, and so I have been extra paranoid about them getting sick. And of course, Noah has a cough and complained of his chest hurting. Then he burned his leg on the stove climbing to reach something in the cupboard. Holly may have a bladder infection, and Coltan had the diarrhea this week. All these things that would have seemed so insignificant only a year ago. Now could be major complications, even hospital admission.<br />
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I don't think that I can accurately describe how cancer changes your life. Unless you have it, or watch someone dear fight it and you fight it with them. It changes absolutely everything. I wish that I could sit here and say that things are better now then they were when we first found out. But really, they aren't. Noah is doing well physically, but emotionally, we are struggling more than ever, And we still have the cancer and chemo to face.<br />
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He is so angry, and disobedient. He hates Holly, and does everything he possibly can to hurt her or bug her. He doesn't listen to Chris or I, and we are at the end of our rope. Every day is a constant battle with him. We are seeing a child psychiatrist, but he is off for the entire summer and we only met twice so far. We just don't know what it is, if its the chemo causing it or something else. We have always had a hard time with Noah behavior wise, but this is unbearable.<br />
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Its heartbreaking to know that your child is fighting so hard against a terrible disease, and then also have a ton of emotional issues to go with it. The feeling of helplessness is overwhelming. Most days it feels like he truly hates all of us. And then its followed by really tender moments, and moments where he is his funny, silly, helpful self. Its really hard to understand.<br />
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When I look back on this year, I can't believe that an entire year of watching my son battle cancer is over. In some ways, it feels like it went by really fast. And to recall all that has happened, all that he has endured, all that we have faced together as a family is remarkable. A year has gone by. An entire year. And he still has more than 2 more years to go. How much chemo can his body handle. How will we get through another year. And another. Its so exhausting.<br />
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But, tomorrow we leave for our camping trip. And that is a positive for us. I certainly feel nervous about it though. Being so far away from the hospital. Please pray for us that it all goes well and that we really can enjoy this time together as a family. Pray that Noah will continue to do well and that his attitude towards us and Holly changes, and we can have our sweet funny little boy back. Please pray that Holly and Coltan will remain healthy, not only this week, but always. Pray that Coltan's lung will be healed and that he will never need surgery to remove it. The thought of him going in for surgery is too much some days.<br />
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Thank you all for your continual support and prayer. I can't even tell you how much it means to us, and how much it pulls us through each and every day.Chris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-71143023778187880362013-05-07T13:37:00.001-07:002013-05-07T13:37:36.755-07:00A picture overview from July 2012 through December 2012 (the faces of Noah)<div class="separator" style="clear: both; text-align: center;">
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This is Noah just before he was diagnosed</div>
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This is just after he came home from the hospital</div>
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This is when he hit his highest weight during the first round of steroids. He gained 20lbs in 3 weeks</div>
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But who couldn't love those chubby cheeks:)</div>
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The weight is starting to slowly come off</div>
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Basically back to "normal"</div>
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And then the hardest round of chemo begins</div>
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Snuggling with dad during the roughest phase of chemo. During this phase, Noah could hardly walk, couldn't eat or drink because of horrible mouth sores, and was in excruciating pain. He was on morphine to control it. And even with his counts at 0, he never once had to be admitted into the hospital. He did miss the entire month of December for school though.</div>
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Still loving his brother during the worst of the chemo</div>
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Christmas Eve, 2012. Feeling much better here, ready for the New Year!</div>
<br />Chris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-36801604263090109372013-05-06T14:19:00.004-07:002013-05-06T14:19:48.035-07:00The start of SummerI will try to be more diligent and update more often, but things have been so well lately that it's easy to forget about the blog and updating and reporting the positives. Which is terrible, and something I need to learn to do better at.<br />
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Noah is doing well. Really well. He had a bout of mouth sores a couple weeks ago, but through prayer and teeth brushing like mad, they are gone! So thankful for that. He has not gotten the flu, or even so much as a cold throughout this flu season. Its really been a miracle. He continues to go to school full time, missing only 1 day a month for chemo in Winnipeg. His hair has completely grown back and he goes to school and everywhere else without his hat now. Its so nice to see. And I think it makes him feel normal too.<br />
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He has started swimming lessons with school and is really enjoying them. I was worried that the kids would question his thin hair, or his scars on his chest from both ports, but its all been really good.<br />
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I think we are all feeling really anxious about this summer approaching. Last summer was such a bust, and so this year it feels like we all just cant wait to get in the camper and go! And just do as much as we possibly can.<br />
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Noah is still having major attitude problems, and the psychiatrist hasn't contacted us yet. He can be so mean to Holly still, and it just drives Chris and I mad with frustration. So we really need some prayer for that please.<br />
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Holly and Coltan are well. Coltan is not showing any signs of his malformations causing problems. He is walking and just so adorable. Holly is almost done preschool and had her kindergarten interview for the fall. She is so looking forward to going. I wish that Noah would be able to help her on the bus and find her class, but they just do not have a good enough relationship. It's sad for me. I just wanted my kids to get along and love and care for each other. But that's not our family. Please pray that will change.<br />
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Prayer Requests: That Noah will be healed of this cancer and it will never ever return to his body. That Holly will remain healthy and that Coltan's lung will be healed. That Chris and I will have wisdom as parents should for their children.<br />
Thank you all so much - Melissa-Chris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com1tag:blogger.com,1999:blog-7168777073165545875.post-46445645557612356822013-04-01T13:11:00.001-07:002013-04-01T13:11:22.293-07:00cancer and all that it isIts been awhile since I have wrote anything. In fact, I have been avoiding the blog altogether. There are just times when its easier to avoid things than to face them. Not that blogging is facing anything, but it just takes time and mental energy. Both things that I lack on a daily basis. (a little humor for you).<br />
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Noah has been doing really well. He is on maintenance now, which means chemo pills everyday, and a trip to cancer care only once a month for IV chemo. He just went in on Tuesday and has done really well. Although he did seem more tired this week, taking a couple naps during the afternoon. It was spring break, and perhaps his body just needed to heal a bit. It was also his birthday, 8 years old already. So in that way it was a big week, and with the Easter gatherings too.<br />
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Physically Noah is well. Emotionally and behavior wise, not so good. He is extremely hard to handle, and has zero coping skills. Something that he needs to have with battling cancer for a few more years. He hates Holly and has nothing nice to say or do to her ever. It is extremely hard and frustrating for Chris and I, and we are really out of options with what to do with him. So I have requested a child psychiatrist to help us. Thankfully, cancer care provides one for families that are dealing with childhood cancer.<br />
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There are so many challenges that come with dealing with cancer. Not only do you have that fear of what cancer is and can do in your child, but you are also thrown into this world of people who deal with it too. You become friends, and almost like a sort of family. You connect, share, and become involved in their life as well.<br />
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My friend's little boy died this month. He had cancer. It's not easy to tell your child who has cancer about another little boy dying. Nothing about this world of cancer is easy or fun. I wish it didn't exist. I wish I didn't have to answer really hard questions that my kids have about it.<br />
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Throughout this experience thus far, I have learned far more than I ever thought possible. I know its not all for nothing, but it never gets easier. It makes it so exhausting sometimes. To never have an 'easy' day. To always have something on my mind. Whether its pills, dosages, restrictions, chicken pox, flu, swimming lessons, or a friends child dying. There is always something to think about. There is no escaping it. And sometimes that's all we want to do. Just be a normal family, with normal problems. Plan a summer holiday without thinking about chemo.<br />
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There are positives too. Learning how to be thankful. And I mean really thankful. Knowing what I know now, has changed my life forever. Even though Noah drives me crazy with being so mean to Holly, I still go into his room at night, lay my hands on him and pray for healing every single night. And be so very thankful that he is there. That all my children are here. Not all well, but here.<br />
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Prayer requests: That Noah will learn some coping skills and be decent to Holly. That his cancer will be cured. That Holly will not end up more damaged from this experience, but grow from it. That we all will. That Coltan's lung will be healed.<br />
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Please also pray for my friend and her husband and their three other children for the the loss of their little boy. Pray that God will give them all that they need to get through this grief.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-71971942093660349992013-01-24T08:28:00.001-08:002013-01-24T08:28:13.736-08:00feeling sadToday I am feeling overwhelmingly sad. I just got a text from a fellow cancer mom telling me that a little boy that we both had met at cancercare just passed away. I didn't think that it would affect me as much as it is. I didn't really meet that family. I knew who they were, seen them several times, but never had the chance to start a conversation. But as soon as I heard that he passed, I was overwhelmed with sadness. I can't imagine what those parents are feeling. Or what they felt while holding their precious baby boy and watching him pass in their arms. I just, I can't imagine.<br />
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I know that none of us know when our time will come, or our children's time. But when you have a child with cancer, it sometime's feels like you are right at deaths door. Even when things are going good, and there doesn't seem to be anything to worry about. You still have a child with cancer. You know? They are not well, they are very sick, their little bodies are fighting and fighting and you are pumping all kinds of drugs into them. Over and over. For years.<br />
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Some days are too much. Some days, the knowledge alone of having a sick child, not thinking about the drugs, or side effects or anything like that. Just the knowledge of your child having a serious illness from which they will die if not treated is overwhelming.<br />
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This little boy that passed away, was the first child to die that we knew since we started at cancercare. And it feels like a different grief that I have now that I am a cancer mom. Before Noah had cancer, if I heard of a child that died, or a tragedy involving a child, it would not have affected me like this. I just cant explain it.<br />
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I feel like I should have prayed more for that family.<br />
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Today Noah went to school, grouchy and mad. Talked back to me, was just in a bad mood. Didn't want to go to school, didn't want to go to hockey tonight. Just ruined a morning with his poor attitude. But he went to school anyways. I brought Holly to preschool, feeling exhausted with fighting with Noah already before 8am. And hauling Coltan around with his mitts and snow suit and toque was extra hard today. Then I got home, and got this text about the little boy that died. And I wished I could have started the day over. I wished I hadn't been so irritated with Noah. He just had chemo on Tuesday. It just really made me think about how I need to value my time with my kids.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com2tag:blogger.com,1999:blog-7168777073165545875.post-75662643811730607502013-01-02T13:15:00.002-08:002013-01-02T13:15:41.067-08:00A new yearIt has been AWHILE I know. But I have felt like I needed a break from the internet, blogs, and facebook. It has been nice. But, I feel like I should update everyone. For all of you that prayed that we would be able to stay home for Christmas and avoid the hospital and blood transfusions, I want to let you know that those prayers have been answered. Noah's counts were at 0. His neutrophils (cells that fight infections) were at 0. The risk of him getting sick was huge. But he never did. We avoided some friends, but were able to be with our family for all our gatherings and have a normal Christmas. It was amazing. Although it certainly felt different this year. I felt more blessed and grateful than I ever had. I was so thankful to be sitting with my family around me than any other year I can remember. Having Noah sitting on my lap, watching his great great grandma opening her presents for her 95th Christmas was something I will always treasure. So thank you for your prayer. We felt it and seen it.<br />
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Noah is doing much better these days. His counts are up and he has been given the OK to go back to school Jan 7 with everyone else. He can start playing hockey again, maybe only half time, but his oncologist said it was a good time to ease back into activity. He didn't need another blood transfusion on Dec 24th, which was a huge blessing. And our prayer request would be that he never needs another one again. I also want to encourage everyone who can, to go give blood. It truly saves lives.<br />
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Tomorrow Noah will go for his last chemo treatment to end this hard round. He will be put to sleep and have a spinal where they inject the chemo directly into his spine. He has to fast, but does very well with this. Then, we start chemo through his port every 10 days for 40 days. He has gone through this phase before and has done well with it. He will be taking Vincristine, so if you want to look up the side effects that I have posted previously on that drug, we would appreciate the prayer.<br />
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He still has some attitude to his sister that is extremely annoying for us, but overall, he has energy and is really doing well. He eats well, although food doesn't taste what it used to taste like. And he really lost all his sweet tooth (which is just fine).<br />
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For alternative 'treatment' we give Noah food grade peroxide to drink, which I highly recommend to anyone fighting this battle of cancer. And even as a preventative. We also have Xango juice that I also attribute to his counts climbing and him not getting sick.<br />
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Prayer requests for our family: that Noah will completely recover from cancer and that it will never again invade his body. That school will be good for him and that he will enjoy. Noah feels nervous now that his hair is gone. That the kids wouldn't make fun of him. Prayer for Holly as she feels the stress in her own ways. Prayer that Coltan's malformed lung will be healed and that he will never need surgery.<br />
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thank you all so much.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0tag:blogger.com,1999:blog-7168777073165545875.post-15604267926435191062012-11-27T12:47:00.000-08:002012-11-27T12:47:13.349-08:00I thought I knewNoah's oncologist told me last week that he has done remarkably well. And he has, but this last round (the last 3 weeks) has been really hard. He was back on the steroids and we seen it full throttle. The mood swings were way worse this time. He would scream at us and demand things. Throw himself into fits of rage. He was exceptionally hard on Holly and would say really mean things to her. He ate alot, but certainly not like month one. He has been up the last few nights to eat twice, and has a really hard time sleeping.<br />
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Yesterday was one of our hardest days yet. He was in alot of pain in his back. He couldn't sit stand or walk. He just rolled in his bed crying and screaming. It was awful to watch. Its so hard to see your child in pain and there's nothing you can do to take it away. I spent an hour trying to get a hold of an oncologist to tell me if I could give him morphine. He can't have tylenol or advil because it could mask a fever. And a fever is an emergency which we would then need to take him to Children's. Combined with Noah's pain, he is then screaming at me demanding that I call the doctors. Finally the Dr on call calls me back and says yes I can give him morphine. I by chance had 3 pills left over from when his second port was put in so I gave him one. But they said to give it every 2hrs to get on top of the pain so I had to call my family dr and get a prescription for more. It took just over half an hour but the morphine started to work.<br />
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I knew this round was going to be hard. They told us it would be, they told us to expect it. But even if you think you are prepared for a rough road, nothing prepares you to see your child sick and in pain. Its excruciating to watch.<br />
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As I was rubbing his head, trying to console him, I looked at my hand and it was full of his hair. Again something we have been preparing for but is hard when it happens. Chris shaved alot off his head last night, and its now very thin. It won't be long before its gone. It was easy to 'forget' that Noah was sick. He didn't look sick. He didn't really act sick. He was mostly able to go to school and play hockey. But not anymore. Hockey will hopefully resume in the new year. But for now, its hard to get him off the couch. With his hair going, its easier to see the sickness. To recognize it. And for others too.<br />
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Right now his counts are low, but hopefully they will build back up by next week. If they are up, he will be admitted Tuesday December 4th for one night. They will administer a new chemo drug that he has never had, and keep him over night on IV. Then on Wednesday Dec 5 he will be put to sleep for a spinal. I think then we will be given another chemo drug that we give everyday orally at home for a month. IF he is on track. Normally, kids need more than this one week break between the steroids. Some need 3 weeks. Pray that Noah can stay on track and be able to continue treatment with no delays. Its not the end of the world if its delayed, but it would be nice to have this phase over with.<br />
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Please pray that Noah will be well for Christmas. That we can be with our family like always. I feel like some things in life become more serious when you have a seriously ill child, and other things need to be taken more lightly. There is so much we are learning in this process. Its changing all of us, our families, friends.<br />
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Other prayer requests: Coltan has been diagnosed with having a CCAM (congenital cystic adenomatoid malformation) combined with low bar emphazema. Nothing to worry about now, but if symptoms arise we may need to do surgery to remove the malformed part of his lung. Most children with this need surgery at some point. And Holly is taking the brunt of Noah's moods. She handles it well, but she is a girl and her feelings get hurt very easily. She does seem to have a good understanding of the medications and that that's what makes Noah so mean.<br />
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Please pray for strength for Chris and I. Its hard to see our children be ill. To have words like chemo, survival rates, and surgery be part of our daily vocabulary.<br />
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Thank you for all your support. We feel your prayers everyday. Without them we couldn't function as we do. On a side note, we have been given the date for Noah's LAST chemo treatment. September 11, 2015.<br />
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MelissaChris Friesenhttp://www.blogger.com/profile/12252633077169258800noreply@blogger.com0