Enjoy some photos:
All dolled up and on our way.
Mommy and dapper Dempsey.
Daddy and Sawyer.
Dempsey and other Courageous Kids on stage with Mickey Mouse!
Keeping busy during a boring section of the program.
Look out ladies! So GQ.
The fanciest family photo we've ever had.
Dempsey eyeing his Michey cupcake for dessert.
Watching a clip of Jessie.
Dempsey holding his Jessie (award). He didn't want to let it go!
Dempsey was noticing the image distortion from glass angles.
Look how he's holding that Jessie award. Precious.
Mommy and Sawyer.
The most prized take-away from the Gala.
If you have not familiarized yourself with NEGU and the Jessie Rees Foundation, please take some time to visit their website: www.negu.org. Jessie was a remarkable young lady this world lost too soon to the dreaded DIPG. But all was not lost as Jessie's legacy marches on... carried by her family and hundreds of people who loved her. Please, share the NEGU mission and message of love, encouragement, and care to those kids fighting cancer.
I happened to win a raffle prize myself. A Harvey's handbag. I've loved these bags since I discovered them 100 years ago. Back then they weren't so popular... or pricey. This is hands-down the most expensive bag I've ever owned... it's in the wrong color... and I LOVE IT.
So, I mentioned the auction... one of the items was something to do with Kobe Bryant. I think it went for something like $4,000. Another items was a week in Tuscany... again, somewhere around $6,000, I think. Then there was this adorable chocolate lab puppy. Y'all will NEVER guess what that puppy went for.
Just guess.
$2,000?
Nope.
$4,500?
Nope.
$7,000?
Nope.
$10,000?
Getting warmer.
$14,000!!!
Think about that next time your child asks for a puppy. :-) Personally, I think that dog should have come with a car! Hahahaha. Such a great cause to support!
_____________________________
Then there's today's conversation with Dempsey's oncologist.
FINALLY- she has come to the conclusion that Dempsey cannot handle 100% dose of the chemo drugs he's required to take. PRAISE GOD! It took his liver enzymes skyrocketing twice and a special vial (from labs) to test his thiopurine metabolites (6MMPN).
Normal metabolite levels are <5,700.
Dempsey's levels were 7,390!
So, needless to say, his metabolites were high. This is not good. If he stays at this level hepatotoxicity (toxic liver) is a real danger. This PROVES what I've been saying for months. His liver cannot metabolize the 100% dose and he needs a lower dose.
Now, a doc called me last night to tell me his labs from yesterday were good and we were to resume chemo at last known dosing. Um, no! Last known dosing was what sent his enzymes into orbit. I refused to do what this doc, who is not even on our team, told me to do. I tried to explain that I would continue his meds at 75% dose, as that was the last dosing where his liver enzymes and all other labs were happy and stable. There was a clear language barrier. She gave up and said she'd have our ONC call us. Well, our ONC never called last night.
Knowing that we needed to resume chemo I made the decision, and ran it by Jake, to resume Dempsey at 75% dose until we heard from our primary ONC.
Fast forward to today's call... our ONC said we could resume at 50% and then titrate up in 10% intervals. I then explained what I had done last night- the whole 75% dose I mentioned- and she agreed that was a good choice. She validated that 75% dose was the last dosing level where his levels were all stable. Fwew. I did it! I was right. I knew his liver couldn't tolerate 100% dose and I managed to protect my baby until our ONC called with the thiopurine metabolite results. I will continue doing exactly what I've been doing for almost a year.
So, we will march forward at 75% dose. We will check labs every two weeks at first and then probably once every month or two. We do not need to test his metabolites again, unless we feel we want to revisit that in a year or so. Doc thinks Dempsey's "magic number (%)" for dosing is between 65-80%- 75 clearly meets that criteria.
I'm wondering if Dempsey's ginger gene expression is also at play when it comes to metabolizing this drug. I know I read that gingers metabolize differently than the rest of us- just the way the genes work- and that was definitely true when it came to pain meds in Induction.
PRAYER REQUESTS
Pray for miraculous healing
Pray continued protection over all his organs
Pray special protection over his boy parts (testicles) because secondary cancers often arise from that region post leukemia treatment
Pray over our marriage
Pray over Sawyer and all his facets
Pray over our life- many desires have been put on hold
Pray over our finances- that we may wise stewards of the blessings God conitnues to send through all of you
Pray over the doctors- pray for open minds, hearts, and eyes
Pray that we will always seek to do God's will and follow the Holy Spirit's promptings
Pray that we will feel "normal" and confident in that new definition
Pray against negative side effects
Pray against PTSD
Pray against anxiety
Pray against anger
Pray against negativity
Pray for a right perspective
Pray for generosity
Pray for transparency
Pray that we don't waste a single moment/ opportunity of this journey
Pray that we remain strong/ vigilant with his at-home protocols
Pray for wisdom
Pray that we may affect change in the protocols for cancer kids
Pray protection over our family- outside forces be kept away
