Reincarnated As A Mother

Tuesday, December 4, 2012

Have I Mentioned That Cancer SUCKS?!?!?!

Today went from difficult to nearly impossible.
I think this picture might give you a sense of how bad Kean feels
(and therefore we all feel).
What makes it even more difficult is that it started out so promising.
My most amazing mom spent the night with Kean so I could get some rest and be with the girls.
When I came in, Kean had turned into his evil twin-- yes, he's back on Steroids... but
he looked good.  Really good.
Still, my mom left in tears.  It is really hard in here.
He is so miserable he fights everything... even just getting his temperature, or his
blood pressure-- and especially taking any medications.
His counts have dropped again.  He's down to 80 because of the Chemo
but the really bad news is he now has mouth sores and they think they have
travelled down his throat.  To put that in perspective, after he had been screaming
for what seemed like decades, they put him on Morphine.  The nurse asked
me on a scale of 1 to 10 what I thought his pain level was.  When I hesitated,
she said she thought he was at a 10.  I said, "really?  For mouth sores?"
She told me they have teenagers in here with mouth sores on constant Morphine
and buttons they can push for more pain meds.  It is quite nasty.
So here is a little snippet of Kean after the Morphine has kicked in.
We spent what energy we had left after wrestling the screaming child all day...
trying to get him to eat something.
We are now referring to this room as the wasteful food depository.  We tried nearly everything
to no avail.  Bacon was a bit of a hit. At least compared to the
jello, ice cream, cool pops, goldfish, pizza, spaghettios, mashed potatoes, lasagna,
pudding, chips, fruit, fruit snacks, cookie, pretzels, chocolate, sausage, biscuits etc. that we tried.
I tell ya, I don't know what I'd do without my girlfriends who have rallied to form Team Kean.
Pam Brown- in the video above was with me today for at least 9 hours straight. 
Melanie Clark came in for several hours this morning and even though Kean would
only go to them for a few... those few saved me.

I think the highlight today for Keanut was when his sisters came up for a short (but loud) visit.
Each year, along with several friends, we "adopt" several Refugee families for Christmas.
Tonight was the big "first American party" we all throw for them to give the Refugees their gifts.
Joanna Shoushtarian took the girls to the party for us and brought them by the hospital
on their way home.
The girls opened up the musical program tonight for the Refugees
with this little number they performed for Kean.
Kean is finally asleep.  And I mean finally.
He took a whopping 1/2 hour nap today and that was it.
I'm ready to join him
but first wanted to thank all of you for the prayers and love.
This is so hard.  The only reason why we are making it through this
is because of each of you.
I hope someday to tell you in person what your support, prayers,
visits, calls, meals and love have meant to us.

6 comments:

CarolF said...

I can believe it about the mouth sores. I have had them here and there my whole life and when I have just one, my mood is altered for several days. It is a surprising level of pain. Sounds atrocious to have a mouthful and down the throat, too. That Kean wants bacon is a surprise because salt doesn't feel good on the sores. Here is what I put on them before bed and they have a chance at healing because they get sealed in: Triamcinolone Acetonide Dental Paste USP, 0.1% by TARO. Also avoid sodium laurel sulfate, like in toothpaste--it burns! Though, again, I would be shocked if Kean allowed you to brush his teeth. Toothbrushes are like weapons near a mouth sore. This is a new level of tough, Lonnie! I am in awe.

CarolF said...

BTW, I gave my friend in chemo some of the dental paste for her mouthful of sores and she eventually waved it off--the help was like a drop in the bucket compared to what was needed. Hence, the morphine!

The Cleggs said...

Lonni--I just don't know how you do it! You are amazing! You all have such courage and strength! My heart just hurts when I think about all that little guy is having to endure. He must be such a special spirit. When they say, "The Lord will never give us more than we can bare," doesn't that make you wish the Lord didn't trust you so much! Well, He does! You are amazing, Kean is amazing! And we are still keeping you all in our prayers. Sandra Clegg

Unknown said...

You know that my heart aches for you, my friend. Continued prayers.

Shellee said...

I just talked to a friend that has frequent mouth sores. She loves cream filled suckers that have been frozen. The other thing is smoothies that are super cold with a little bit of chloraseptic in it to numb the pain. I'm so proud of the way that you are handling all the many things your darling boy is going through. I know that with Olivia, I often feel like the trial isn't mine, but that I'm here to help her through it with a good attitude.

Kelly said...

Oh Lonni, I am grieving with you for Kean's pain - and for yours. My 4 year-old Daniel has ALL so I know that your personal battle against cancer is unique because you are a mother. The conversation is about Kean but I see you too. When I pray for him I will pray for you too! God bless.