Thursday, December 8, 2011


Christmas 2010 (three weeks before diagnosis)

Sitting here at my computer tonight, I am trying to find the words to express the events of this past week. I guess a few words that come to mind are frustrated, exhausted, sad and scared. And every single one of these emotions Christian is feeling to the utmost degree. I feel as though as a family we are just hanging on by a thread. All five of us holding onto each other, dangling over some theoretical ledge, just waiting to fall into the depths below. I can picture us and I see the scared look in our eyes – my kids looking to me for support and assurance and I don’t know if I have it in me to give anymore. Each day Chris and I get a little more frustrated and a little less focused. The only peace left is knowing that if that string does snap and we fall, we will land gently into the hands of our Father who has promised to snatch us up when we plunge.  Perhaps we have already fallen and this is what if feels like to be held up by those we love and who love us in return. So many people came to our rescue today. Dianne, my sister in law, showed up with coffee AND Christian’s favorite play friend – Isabelle. What a combo! Followed up with Louise, Tracey and the whole gang who showed up at our door this evening bearing food and tools to help finish my mom’s suite. An AE Bowers family bringing us a card and message of hope. My brother Peder who went to the hospital so Chris could run around and find food that Christian might eat. I think Peder is Christian’s second favorite play friend because, “Uncle Peder makes good star wars noises”. He said to Chris tonight after my brother had left, “Do you think uncle peder could come back again, when I am not so tired?” My heart is aching. Aching for this little guy who is at the end of his rope. Chris and I are so frustrated with all that is going on with Christian – I can only imagine how a 4 year old deals with the same feelings and insecurities.

We were discharged from the hospital over the weekend after our six day chemo stretch and the roller coaster began. Christian battled the NG tube like a ferocious beast. He is so stubborn and refused to swallow with the tube in his throat. Which means he carried around a tub and spit into it whenever his mouth got full of saliva. And when he gagged on his spit he would throw up and out came the tube and life was good again, for him. Unfortunately that tube is essential to him right now. It is the only way he can get enough nutrition into his body. But we can’t seem to get him to keep the NG tube down long enough to give him any feeds. We are on our 5th tube and each insert is traumatic and terrifying for Christian. Today our oncologist told us that Christian is literally starving. Wow. It sounds easy enough to fix. Eat some food. Except Christian is plagued by constant stomach pain that we cannot seem to get a hold of. Tonight while in hospital he got some morphine and he seemed much more comfortable, so perhaps this is what he needs. I don’t know what Christian’s immediate future looks like but we pray that his tummy is pain free, he gains some good weight, his feet stop hurting, he gets better balance and strength and most of all I want to see confidence and assurance in his eyes. I want him to be hopeful and not so disheartened. I want him to know that things are going to get better and he is not going to be sick all the time. There will be a time when he won’t have pain and he will be able to eat the foods he wants. I just want him to be able to be a four year old boy. To be excited about Santa Clause and decorating a Christmas tree.

Christian, Grammy and Ryan Christmas 2010
Christmas really is very different this year. The things that I used to be so excited about are not so exciting anymore. Whether I have lights on my house or a real tree in my living room, don’t seem to matter when we are not all together as a family. I hate being separated. I don’t like going to bed at night and not having somebody on the pillow beside me. To be honest I am glad when Evan comes running out of her room because she is scared. Because this means I have somebody to keep me company. And I don’t spend so much time thinking about how much I miss sharing my bed with Chris and Christian. How much I miss feeling his skinny little leg cross over mine. I miss when he will randomly grabs my neck and give me a squeeze. Making sure mom is ok. But for now he will live at the hospital until he can get his nutrition and hydration stabilized. He needs to be able to gain some weight and get stronger. Hopefully by next week we will be safe to bring him home and spend a few nice days together with Papa Norm who arrives tomorrow. It will be so nice to have some extra help around the house.
So for now the trials continue and each day is a new venture and brings hope of healing and health for Christian. Pray for healing, weight gain, a pain free body, confidence to keep fighting and peace in our hearts. Thanks for reading.
Uncle Peder making us Christmas Eve pizza's!

Today I am thankful for:
1.     Laughter with friends at 10pm at night
2.     Watching Christmas movies with Evy at midnight
3.     Louise’ amazing chocolate chip cookies!!!!


  1. My heart is breaking for you. Sending all I can to you and your boy. Big love.

  2. I sit here, not knowing how to begin speaking to you. What to say. You are being strong. You might not feel it all the time, but you are Megan. All of you are. You are existing the only way you know how to right now. That's enough. Hold on to eachother. Cling. It's what you are already doing and it is the right thing. You are loving your family and they feel it. That love is lighting the darkness.

    Lise Wendt

  3. I am a complete stranger from the States who stumbled upon your blog. I feel, so strongly, your family's pain. I have a child with Hemophilia (severe with inhibitors)--very serious. Normally, Hemophilia is "doable," liveable. My son's case is very difficult since he sometimes responds to the medicine that can stop a bleed, and at other times, does not so readily--and then we are off to Children's for a few weeks.

    God IS good! No cliches here, but He has walked with me through this battle for over 16 years. I just wanted to encourage you and let you know that a stranger is praying for your whole family, especially your precious son. May God fill you all with peace, light, and His love. In His grace, Martha

  4. Prayers for the hope that is promised to us in this advent season will sustain all of you; that God's love will continue to be made manifest to you in your friends and family and the strangers who are praying for all of you. Prayers for Christian - for strength and health and hope and joy/ May the source of living water nourish all of you each and every moment, may the peace of Christ be with you all and may the Holy Spirit sustain you all always

  5. Megan,Chris and family
    Even though we've never met, we share a mutual friend. I began to read your blog after seeing it on her facebook wall. My heart breaks for your family. Please know that you have strangers who are praying for Christian. Praying for strength and for him to gain weight and BEAT this!! Also, for your family to stay strong and that you can all be together under one roof very soon.
    Thanks for sharing your story. It's very heartbreaking and inspiring. I cry every time.
    May God Bless your family

    Crystal-Sherwood Park Ab.

  6. Hi,

    My friend sent me the link to your blog because she said that she thought about me when she came across it. My name is Brad and Christian and I have a lot in common. I was diagnosed with Rhabdomyosarcoma at the age of 6. Like Christian I had a tumor in my lower abdomen which was inoperable. I went through 2 years of chemo and extensive radiation. I wasn't given much hope, but I am now 26 and just celebrated 18 years off of chemo on December 3rd!
    Anytime I hear of a child fighting cancer it breaks my heart. Especially because I have been through it as a child and met a lot of children who have battled cancer, all who have changed my entire outlook on life. But Christians story especially hits home.
    I can't imagine what it is like to be a parent with a child fighting cancer, but I do know what it is like to be that child, and with the help of the doctors, nurses, family and friends, I know that Christian can beat this. I can tell that he is a strong happy little man! Just make sure as hard as it might be that you all stay positive.
    If I have given you an extra little glimmer of hope, then that is exactly what I set out to do. If you wish feel free to email me at

    Take care


  7. Megan and Chris, Wow. Just no words of any kind can be shared after your words here. To say the least, my heart is very sad for little Christian, his little brother and sister,you and his daddy. So difficult to go through things like this with our loved ones. So today I thought to share this word. It is God's words and I pray for all you ask and for the Lord's perfect plan for Christian to be accomplished and completed. Phillippians 4:19 You may not see a way for your dreams to happen,but God promises to supply all your needs. So simple but so full. Blessings and praying for a wonderful ,blessed Christmas for you all. Nancy Degenstein

  8. Dear Megan and Chris,
    My heart is aching for you and your precious children. It has been such a long and rocky road and at each point, it feels like things will get better only to see another setback. I am praying earnestly for dear little Christian, for freedom from pain, for nutrition, for hope in his dear little eyes. For each of you, I pray God will carry you through the next few weeks in a new and compelling way. That your weakness will be covered by His strength, that you will feel HIs love through your sorrow and exhaustion. That He will raise you up each day to face just the burdens of that day, that you will cast your cares on Jesus our saviour and know real peace. That the ups a downs will steady out and life will be more settled. And tonight, I pray you will rest easier knowing Papa Norm is there to help. May God hold and keep you every step of the way. Love Joan

  9. I will be praying for your entire family, what a difficult struggle! So heartbreaking! I will pray for peace and strength for everyone, especially for Christian, your sweet little one. So precious. Try your hardest to enjoy the holiday season with Christian, and hopefully he will be home soon, snuggling with you again!

  10. Sending love, hope and prayers to you and your family. Special wishes for Christian to gain weight and strength so that he can be home again.
    From the Goetz/Lockhart family (AE Bowers)