Wednesday, February 22, 2012

Plus 7

getting ready to go to xray

I don’t think I have the words to describe the past few days in our seemingly never ending journey. Christian continues to get sicker as he tries to cope with ridiculous amounts of pain. I don’t think I can even comprehend what he is dealing with. Yesterday he was throwing up mouthfuls of blood and tissue as the lining of his throat is slowing sloughing off. He is down to bare muscle and fragile nerve endings and every swallow, cough, hiccup or movement of his vocal chords sends him into fits of panic and suffering. I thought that I had watched him suffer before nothing compares to this constant pain and he rarely sees any reprieve. Every ounce of pain medication and sedative they throw his way – he metabolizes like sugar in water. The statement “one day at a time” has never been truer than right now as I can't even fathom how he would survive another week of this agony. I guess this is the blessing of pediatrics as Christian really has a limited concept of time. So I try to tell him that this will all be over soon but that doesn’t mean much to him. For him, right now he is experiencing pain that seems to have no end. I am constantly praying that God would show us a miracle and have his stem cells graft swiftly so that there would be a quick end to this trail for Christian.
bed bath!!!!
We are cuddled in his hospital bed as he has some relief (praying its not temporary) and he sleeps with gurgling sounds that accompany each in and out of his breath. His chest is full of fluid that he can not swallow nor cough out. I am very thankful that the pain team was in his hospital room this afternoon to witness one of his nightmarish “attacks”. A plan was quickly formulated to help Christian cope and try and get some rest. Despite everything that he is going through he, once again, amazes me with his patience and fight. He has done so many adorable things today I wonder when my heart will finally explode from love. During one of his horrible attacks I tried to get him to focus on his breathing. He put his skinny arms around my neck and pulled my nose to his nose and we breathed in unison. He calmed quickly and it felt good to be able to bring him some focus and peace.
More of our awesome unit nurses
In the midst of everything happening, Christian had to have some x-rays (which he brilliantly followed orders and held still), an IV poke for blood tests, a blood transfusion, his daily anti-coagulant injection and a dressing change. Tonight when he finally settled down, his eyes puffy and red with single tears running down, his lips swollen and sore, his nose runny from being so upset, I looked at him and thought that tonight, if ever, he needs help. I instantly thought back to an email my faithful sister in law wrote me declaring that God had hoisted Christian up onto his shoulders for this crossing of the finish line. And I can see it. I can see the end in site and I have never been more thankful that when things are falling apart around me I can look up to the heaven’s and proclaim to God that I can’t do this alone. Of course Christian is being guided and held high. What an amazing photo that would be. A black and white shot of Christian holding onto God’s hands as he rides high on his wide shoulders over the finish line. Crossing over a line drawn on a sandy beach with a banner above them that reads “Finish line” with a time of 10080 hours. He is gently set on the ground after giving Jesus one amazing hug then runs into mine and Chris arms – that we would get to keep him for another season. That God would deliver him back to us – literally. Immediately we grab our bucket and shovel and head to the shore line.

Today I am thankful for:
1.     Our good friend Taiya getting discharged from the hospital after completing her Cancer treatment and walking out the doors – in remission.
2.     Surprisingly good Chinese food from the hospital cafeteria
3.     Brenda’s heart shaped cookies. YUM


  1. We will continue to lift Christian up to our Lord and Saviour. Praying that you and Chris can find some rest and peace knowing that there are many out here cheering Christian on and knowing that he is loved dearly by Jesus.

  2. OMG you have the most amazing little man ever!!! My heart goes out to you!! He maybe suffering right now but Christian is a fighter and he will fight to the bitter end!! Kids are a lot tougher than we give them credit. I can't wait to hear about his recovery and being able to return home to that normal life he so muchly deserves!

    Send thoughts and prayers your way!!
    Much Love!! (Hugs)


  3. Praying for Christian

  4. Once again, I am brought to tears with the thought of Christian being in so much pain and to hear your pain at having to watch him suffer so. What a trooper he has been because you and Chris have shown him the way. The steps you have all walked are unimaginable to me. I am so grateful that relief is in sight for you all. Hugs! Tracey

  5. Christian you are such an incredible boy and a true hero. We will continue to keep you in our prayers.

  6. We are praying for Christian and your family.. my heart is just breaking for you all! He has endured so much in his short life and I am sure every day you wish that good news will follow that his cancer is in remission and he can finally come home and start playing with his friends and doing what little boys do..
    Your blog makes me think of my own children and makes me want to hug them tighter and shower them with I love yous more that I normally do! Christan is a fighter and he is brave, couragous and strong! He has an army of well wishes behind him so we know that with God's healing hand and all our prayers he will be ok! You have one amazing son.. God bless him and you all!

    Kristine Wolfson

  7. I am thinking of you all. I cannot begin to imagine how you are all feeling xx

  8. I can't imagine the pain you must be going through and still be able to write this blog. Thank you for this to keep us all up to date. HOpefully this will soon be over and you will all be home again together. Sending love and prayers Edna

  9. It is hard to imagine, but some day you will look back on this with joy. The memory can be very kind, remembering only the good things and forgetting the pain, the agony and all of the hard parts. It is true that challenges make us stronger and your family is already invincible -- no matter what, you will come through all of this and be able to celebrate each and every day. I cannot take away your pain or Christian's, but I can pray that it will pass and leave you even stronger, more loving and more compassionate than you already are. That is my prayer for you. May God hear our prayers and in God's love, answer.

  10. We are keeping you all in our prayers - your blogs are both heartbreaking and so inspiring! Christian - what a very special little boy you are!

  11. Christians fight moves me to tears, literally every time I read your blog. He is such an amazing little fighter and I am praying that God will give little Christian peace and healing so he can have a "normal" childhood.

    Praying everyday for Christian and your family.

  12. Oh, Megan and family, I am so deeply touched by your struggles. Our little Mattias is in the hospital with pneumonia and we have only had the angst for 7 days. I cannot comprehend what you have endured for some 52 to 60 WEEKS!. We continue to pray for your strength and Christian's fight. God is definitely leading you through this. Love, Marilyn & Bob

  13. I continue to keep Christian in my thoughts and prayers. What an amazing, strong little man he is...he is my hero!

  14. Praying for you. I am sending you strength Megan. From one mother to another. My heart aches when I read your words. To watch your little angel struggle and go through that pain. Your visual about Jesus crossing the finish line with Christian; hugging him and then sending him back to you and Chris' arms...that was beyond beautiful. That IS what's happening. Keep faith.

    Lise Wendt