Tuesday, February 28, 2012

Plus 13

It’s just one of those days. Woke up tired, spent the day tired, bit my tongue eating breakfast, Christian threw up his breakfast, can’t seem to shake this headache, kind of a sad feeling vibe in the room. I have a tendency to want to leave our hospital room door open; I even put a chair outside in the hallway so I could sit outside the room. I think perhaps I have been here in this hospital room for too long. So long that I am scared to leave. Chris is starting to feel better and we even discussed him staying tonight, as I fear a sore throat is creeping into my world. The thought of not being here causes me some serious anxiety. I have been sucked into the oncology world and now I am afraid to leave. I have spent the better part of these past two weeks trying to nurture Christian back to health, trying to put smiles and his face, trying to wipe the tears away, trying to distract his pain.  I have invested many hours with the different medical teams keeping track of Christian’s health, oncologists, hematology, pain services, dietician, physiotherapy and transplant. In our world that right now seems so out of my control it feels good to be able to control something. If I leave I am afraid I will lose it. I know I will constantly wonder how Christian is doing? Is he crying for me? Does he need a hug? A warm blanket? A sip of ice water? Chris is absolutely capable of doing all of these things – in fact it’s not really about Christian at all. It’s about me releasing control. Sigh.

This is a preamble into preparing myself to leave the hospital. As weird as it may sound this oncology unit brings a lot of peace and comfort into our day. There is always a friendly face when you are sad, worried, scared, and unsure. Somebody who knows exactly what you are going through. Somebody else who is staring death in the face. Another mom or dad who is fighting for their everything. Somebody who has it a little better and somebody who has it a little worse. Even at one in the morning when you can’t sleep you can always wonder out to the nurses station to say hi and join in the conversation. There is always a nurse or doctor outside the door to ask your medical questions and dispel your worries.  I wonder when we finally lay down in our own bed together, will it feel a little lonely to not hear the noises of the machines, the hum of the oxygen running and the giggling of the nurses at the unit desk. I cry some tears and my heart feels heavy at the thought of losing these people from our lives who have given us so much. Who have given us validation for our feelings and hope for Christian’s future. I have never truly respected how amazing these people are who not only care about Christian’s body but about his heart, and about our hearts. Their smiles at Evelyn and Ryan when they come into the unit for a visit. Laughing at Ryan running to the unit fridge saying, “cheese, cheese” and slapping the door till we open it and get him some.  We have become a family here in the oncology ward and when we leave it will be like leaving a home that we have become so comfortable in. We will have to say goodbye to people that have touched our lives forever and nurses whose faces and names I will never forget. I am sure it all sounds very weird but my heart aches none the less. I wish their was someway I could honor them and how they fought along side us for Christian. The only thing I can think of is to ensure that we take what they have given back to us and run with it. Run to the park, the beach, the pool, to the couch on Saturday mornings in our pj’s. This blog is dedicated to the nurses of Unit one. Each and everyone of you will live in our hearts for a very long time.

Hospital visit with Nanny Lou who

As I look out our window, once again at the lights of COP, I exist in a life saving bubble. Christian has been kept alive in this bubble and I wonder what will happen when the bubble is no longer needed. Will I remember to be thankful? Will I remember all the lessons we have learned over this past year? I hope I can read back over my words and remember the feelings and emotions we experienced. I pray I can remember our feelings of despair and desperation. Will I remember how it felt the nights I prayed to God that we would keep our son?  Will we be able to continue to honor Christian’s valiant battle with a life of service and gratitude? Wow well that is a lot to digest. Maybe this is why I have a headache.

Ok random ramblings aside Christian is doing great today on day plus 13. His counts have continued to improve and in some cases they are the best they have been since he was diagnosed. He is spitting less and swallowing more. He drank half a glass of juice today and used a lot less pain medicine. The sedatives, antibiotics and narcotics are slowing coming down and his energy is slowly rising. I can see glimpses’ of his old personality returning and his desire to play slowly build. He is, for the first time in almost three weeks, interested in his star wars guys again. I feel discharge day is coming soon. We will have a tearful goodbye and take the familiar drive home. Soon we will have a much deserved celebration with pizza, dancing, balloons, music and fun…anybody in?
Thankful for the ladies who took such good care of Evan over these past three weeks

Thanks for reading and for your continued prayers.
Today I am thankful for:
1.     Pintrest
2.     Email
3.     Blogging


  1. Wow! Megan what a time you have had living concurrently in two different worlds. That takes more energy than one ordinarily has. Accepting the fact that you do not have to be in control all the time is acutally very life-enriching, strange as it may seem to you right now. Your main job now is to let yourself heal.(From a voice of experience, albeit not from such an extended time in hospital.) Lots of love and commendation for all that you have been able to do, Aunty Beth

  2. Seems to me, not that I've ever been scuba diving (!) that for you all it will be like coming up from a deep dive and needing to come up slowly so your lungs can acclimatize to being out of the water again. The Lord will still have His arms around you, will guide you through this time just like before, gear you up for this next phase of your journey together. Blessings! Patricia (Antigonish)

  3. Dear Megan,

    This beautiful blog that you have created will exist forever and be a reminder to you of all your family went through. You will remember, because you are aware of the chances of forgetting. Turn to the blog when you need strength. You have a such a gift in writing. I hope you continue it! PS: I'm in for the dancing pizza party! I'll bring my belly dance skirt and tap shoes, sistah! :) Much love, Tracey xoxo

  4. Megan,

    What you have shown me and everyone around you is to trust God, to have faith and never give up, no matter the circumstances. You are a very strong person and you and your family will make it through this. Your blog has touched many lives, more then you could ever know. My wish for you and your family is that family vacation when this past year will seem like a long time ago, and seeing Christian grow up big and strong, knowing how much his Mom, Dad and sibilings loved him so much. May God continue to hold you all in his hands, and you feel his arms around you every moment, and of course, the joy of eating pizza!

  5. Megan, I am so glad that you blog. Even if you never showed your writing to us "out here", I am so glad that you write. It's theraputic.

    And I am relieved to hear that Christian is doing so well. He's such a trooper, that little man.

    And it is normal to feel a sense of loss when you think of leaving the hospital behind. I would be surprised if you didn't. This is nothing even comparable to what you are going through, but my son, (who is 18 now), broke his leg when he was almost 4 and I was pregnant with his brother. He had to stay in hospital for 4 weeks in traction. I was around 5 weeks away from giving birth and HUGE. I insisted on living in his room with him. I just didn't want to go home at night and leave him alone, so I ended up being at the hospital 23 hours a day. The staff were very accomodating and said they were relieved to see a parent that wanted to stay with their child, and could, since I was a stay home mommy.

    When we left the hospital after around 3 1/2 weeks, there was a sadness to it. The staff had become our 2nd family. Administering pain medication to Jacob and talking to me about my upcoming delivery of my 2nd son, Ryan. When I couldn't sleep, I would wander out to the desk and would find a nurse willing to chat for a moment. They even cleared out a shelf in their staff fridge for my milk and snacks.

    It only took a few days to get back into our routine and realize that home was the best place in the world, but I just want you to know that what you're feeling is so understandable. Truly. When you leave, it will feel odd and maybe surreal. Give it a week and you'll be making pancakes on a weekend morning and it will strike you that it's back. That feeling of normalcy and...home.

    Lise Wendt

  6. Missing you , this has been your life for 13 months it is like moving ,a whole other routine but it will be no time at all when you will be getting ready for Christian to start school and you will have another routine to get used to. You have made a life around Christian's cancer and now you can make a life around his future the way it should be. Talk to Ryan and Evelyn last night felt like it should have been me giving them their bath ,but it's you and Chris that they really want to say goodnight to every night and that is about to happen ,not for a few nights or just mom or just dad but both and christian a family . Life will change but it will be the happy times . Christian fight has changed us all ,our faith in god and our love for our family ,he has gone though alot and given us all so much .love you all Nanny

  7. wow Megan...you have brought a tear to my eye as this is why I do it...it has always been my prayer that I would not just be a nurse but a nurse that loves, a nurse that cares, and a nurse that makes those really crappy times maybe just a bit better. It has been such a privilage to care for not only Christian but for your family. I am so happy to hear that he is doing well and that discharge is around the corner!! To be honest we as nurses have the same mixed feelings as you have when treatment is over...families become more than just "patients" who we see everyday and boom they're out of our lives and all we do is wonder how and what they are doing now. Don't get me wrong- we are ecstatic to see you leave healthy and whole but it's hard for us too! I also want to thank-you for showing such courage and faith throughout your journey. You have inspired my walk with God to be stronger and more faithful...
    Thanks for writing,
    Nurse Christi
    P.S: NO baby yet!! Will let you know when it comes!

  8. Oh Megan, I think your feelings are completely normal and even those of us who have not lived your life the last 13 months can understand.

    It pleases me to no end to read that Christian's counts are getting better, that his pain is lessening and that his spirit is finding it's way back thru the fog.

    I found this quote that I thought was perfect for how you are feeling.

    All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another. ~Anatole France

    Much love, strength and courage to all of you...you are on the home stretch!

  9. Oh Megan, I cant imagine the waves of emotion your feeling. I suspect its a bit surreal that the end of the battle is really SO close. That thing you've been working towards and fighting tooth and nail for, is finally here and you feel a little lost. It will take time to find your new normal, but when you do it will be oh-so-sweet.
    I know your family vacation to celebrate will be MAGIC.
    Perhaps Christian and Abby can do gymnastics together in the coming years. :)

  10. So happy to hear Christian is doing well. We have all prayed along with you for your sons health and can`t wait for him to just be a little boy again without pain.

    God Bless your family

  11. Great entry, Megan.
    I do believe that after this experience you will never take for granted again your health, your children, your husband and all the "ordinary" blessings that come from "ordinary", "regular" life. In my experience, that's one of the blessings of a struggle and a hard season: a deeper appreciation for life and the ones we get to share it with.
    As for a tribute to all the nurses,doctors and medical staff -- you wrote it beautifully in this entry.
    Be blessed, Crowell Family. I hope you feel the warmth of the sun on your faces and sand between your toes very soon!!

  12. Megan just read your latest news so glad everything is on the way toward home. I hope you get some rest and feel better. prayers love and hugs are still headed your way love to you all Edna