Mega drugs. That is where we are at today. Christian is technically on day +4 and he is feeling as they anticipated he would be – horrible. Our oncologist seems to think we may have one or two more days until the climax of his pain, and then we wait it out until he ‘grafts’ and his counts begin to return. You know that you have been at the hospital too long when you are first name basis with the ‘pain team’. This is a specialized team of doctors, nurses, etc. whose job it is to help kids manage their pain with a cornucopia of drug cocktails. We have yet to work out the perfect solution for Christian but they are constantly adjusting drugs and levels to find a place where he can rest and be semi-comfortable. So not much new to report but we are plodding along and with each new day, dreaming of the days and weeks to come.
Christian is such a little sweetie pie and continues to melt the hearts of the nurses around him. He is so brave; he holds his own arm out for blood pressures, attaches his oxygen saturation probe, helps with his dressing changes and suctions his own mouth out. Even though things are so crazy out of control for him he seems to find joy and strength in helping with the little things he can.
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| Preparing bag of stem cells for transplant |
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| Thawing out the stem cells in a roaster pan of warm water! |
Chris took the kids to the pool today and I felt a twinge of sadness and despair as I looked over at Christian in so much pain and misery. I quickly thought of the day when we will, as a family, go to the pool together – all five of us. It has never happened, as Ryan was just a baby when Christian was first diagnosed. I can’t wait until we can be out and about together as a family. Not even on the beaches of Hawaii or on the rides of Disneyland – at this point I would settle for the Genesis place kiddie pool. All five of us sitting around the hot tub and thinking about how grand life is. Thanks for reading.
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| Valentines supper at the hospital |
Today I am so thankful for:
1. Pain service team at the ACH
2. Heart shaped pizza from Boston Pizza
3. The smell of good food when you are hungry
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| Chillin' with Ryan |
Thanks for continuing to share, Megan, it's so good to see the updates. Christian Crowell you're an amazing boy - great you're helping everyone at the same time they're helping you :-) Good to see the pictures of you and your family. You are loved lots. God Bless. Patricia (Antigonish)
ReplyDeleteMegan, I marvel at your ability to find something to be thankful for. In my own daily life it's so easy to just slide into complacency. But I know this isn't just you. Jesus is so real in all yours and Christian's struggles. You are being watched by so many people who are witnessing the power of God in weakness - people who need to know that our Father is faithful and will keep us through anything life throws at us. Jesus has already triumphed over Christian's illness. Thank you, Jesus!
ReplyDeleteGood Morning! To wake up and see that fuzzy little head is just the best present anyone could wish for! Thankyou for making my day! "Auntie" Marilyn xoxoxo
ReplyDeleteChristian is going to be a wonderful man one day. You know that, don't you? He's going to be kind and compassionate and warm. I can see that boy doing wonderful things with his life. He already is. Thank you for sharing with us once again Megan. (I wish for the pain days to go by quickly.)
ReplyDeleteLise Wendt
I am so glad things are going as scheduled. I will not be long before Christian is at home teasing his siblings. Love and continuing prayers for you all love Edna
ReplyDeletewow what a trouper ,Megan you have such a way of words ,and are soso strong ,I know the Lord has given you an extra measure of ,patients ,Love ,Peace ,to see all this going on and I am sure he is smiling on you today and every day through your journy .with continued prayer .
ReplyDeleteMargaret Greenlaw
Your family continues to inspire me! Does Christian have a facebook page?
ReplyDeleteMega, your children are so beautiful. LOVE that last photo!
ReplyDeleteI meant Megan - you are not Mega - sorry...
ReplyDelete