I think it's time to dig out his ol' name from when he was in my womb-- Spartacus-- 'cause he sure is fighting with everything he's got.
We had another rough night last night-- and probably will continue to slog through the dark hours until this chemo
kicks some major leukemia butt!
His arm and leg are so swollen and now his other leg is beginning to swell. So far, I've kept the screaming
contained to my mind. This hospital room has become a torture chamber of sorts-- just watching him in so
much pain is brutal.
My mom came up for several hours today.
I know he looks like he is smiling in this picture-- but he's actually grimacing in pain and grinding his teeth.
Our friends the Borup's took the girls for the day, so my mom came and sent me home for a shower (I was pretty ripe) and a two hour hard core nap.
He got his first of countless spinal taps, his first few doses of Chemo
and a mind boggling amount of medication.
The boy only weighs 24 pounds and yet, for example, he has had 8 different medications in the past hour.
I try not to think of the toxic cocktail in his little body.
Most of the time, he is folded over in half for a very fitful sleep.
I had a gazillion of the kindest emails today, several phone calls and visits from Momma Gump and Meagan, Kean's therapists, my favorite nurse, Liz, who took care of me during my staycation at St. Luke's and who delivered Spartacus,
my friends below: Shaw (the greatest pharmacist in the world), Foad, and Al and Joannah Shoushtarian. Joannah was Greer's 3rd grade teacher this past year.
And finally, Elly and Ron Moomey brought up the yummiest Salmon dinner. After several days, I finally
have an appetite. Good timing.
Now if we can get Kean to eat something. He wouldn't take a bite or drink any milk today... just water and his IV's.
I'm told the steroids should kick in in the next few days and it will be like having a group of teenage boys living in my kitchen-- the kid will want to eat and eat.
I'm off to bed. We survived another day and are another day closer to killing enough cancer cells to get him out of this horrific pain.
Thank you again for the amazing prayers-- coming from all over the world and from folks I've never met.
Wow, there are so many good people in this world.
And even though we are in struggling with this trial, the Lord has blessed us with many tender mercies and many of them have come in the form of your sweet messages.
5 comments:
Oh, Lonnie. Know you, the family & your sweet baby are all in our prayers. I hope you don't mind, but I asked for prayers from my FB friends. I wish I could help someway. xoxoxo
You don't know who I am...but I am a Great friend of Jennifer and Dave Leavitt (I grew up with Jen since I was 3 years old). She gave me your blog. I had a darling Downs Syndrome baby girl just 1 year ago and we are loving every moment with her. Reading this and seeing your beautiful sons pictures brings tears of joy and sadness at the same time. Joy that you were lucky like myself to get to raise a sweet DS child, and sad that your son, you, and your family have to go through this. After seeing so much in the news and on blogs about DS children and Leukemia it scares me. You and your sweet boy are in my prayers. Thanks for allowing me to read your tender story!
Mister Miracle is at it again. Our prayers and thoughts are with little Kean and your family. We are here to help in any way.
Lonni and Byron, we feel privileged to follow your story via FB and our thoughts and Prayers are with you and your sweet family. We believe in miracles! I have personally experienced countless miracles from the Prayers of others on behalf of my sister when I was growing up. Little Kean has the power the influence thousands through his trials and blessings! You are his mouth piece to the world. Continue to write and share and we will continue to read and pray. Please let us help in any way possible. We would love to help with the girls in any way, Or stay with Kean in the hospital. Love and Prayers for you and your family!
Sending you all our Love! I have many of my families and staff at Kaleidoscope praying! See you soon Mamma Gump!
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