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Friday, June 24, 2016

There Is Scary Stuff Coming Next Week

Please read the following and then hit your knees and pray HARD for our Dempsey!

Next week's schedule:
Monday (a LONG infusion day):
  • Erwinia (new chemo drug) infusion over 2 hours with 1 hour observation
    This is the new drug because he had such a horrific allergic reaction to the PEG 2 weeks ago. PEG is made from e-coli and this Erwinia is made from chrysanthemum. This drug is KNOWN to raise ammonia levels and they DO NOT check patient's levels- AT ALL. Well, you know me... someone's gonna be checking my baby's ammonia levels EVERY BLOOMIN' WEEK! The ammonia release in their body is a reason for the nausea and vomiting and can cause a coma if not checked/ regulated. HELLO! I don't give a rats patootie if "it's extremely rare"... check the levels! Thankfully our primary oncologist is willing to work with me on this.
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)
Tuesday:
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Wednesday:
  • Erwinia (new chemo drug) infusion over 2 hours with 1 hour observation
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Thursday:
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Friday:
  • Erwinia (possible injection dose)
    The injection is said to have less side effects despite having a longer half life (72 hrs). I am so mixed about this drug. The primary oncologist says she doesn't have another option beyond this drug and that it's a crucial part of treatment. *pulling my hair out*
This schedule repeats the following week as well.


We will be spending so many hours at CHOC OPI center. I am about to lose IT over these drugs. The more I study about the history of the medical profession as we know it, the more enraged I become. This journey is ugly! This next phase is brutal. I cannot understand how people blindly go along with this kind of treatment. Dempsey doesn't have a chemotherapy deficiency!! Some part of his body's communication broke down. We need to figure out what step didn't work right and fix that!

Lord, I beg you to miraculously heal my baby! I'm talking the kind of healing that levels the "knowledge" and "science-based proof" of the medical profession. I want my baby to be rid of this cancer so we can get back to living the precious life you gave us. I am weak, Lord. I can't handle this. I need YOU. I need you to show me the way out from this. I'm so lost, Lord. I'm so conflicted. My heart is torn. Why haven't you healed my baby? Why does his little body have to endure such torture at the hands of those who don't understand there is a better way? Why won't you let me compartmentalize my thoughts and emotions? I don't want to feel anymore. It's hard. It's horrible. It's exhausting. I try not to worry but I know things. I wish I didn't know things. I just want this to end. Now! Not in another 37 months. Now! I am a mother begging on behalf of her child. You didn't make Abraham wait 3 years and 3 months for Isaac's deliverance from the alter... Please, Lord... touch my son with your miracle filled fingers. Amen


Prayer requests:
Pray for MIRACULOUS HEALING (Lord, I'm waiting!!!)
Pray protection over every non-leukemia cell in Dempsey's body
Pray that the drugs go into his body, kill the sick cells, and quickly vacate his little body leaving NO sign of their presence, other than no leukemia cells
Pray against negative side effects
Pray against complications
Pray against allergic reactions
Pray for calm nerves
Pray for my sanity
Pray that I can embrace and enjoy the next 60 hours of "normal" with my family
Pray protection over Sawyer- these coming weeks are going to stress our family
Pray that this coming week is smooth and uninteresting
Pray for wisdom for ALL medical staff
Pray accuracy for the pharmacists who mix my boy's drugs
Pray for steady hands
Pray blessings and peace over the lives of the medical staff
Pray for wisdom and Divine guidance for us through this shitty valley called cancer
Pray that each of us can live in the moment and never be captive to the life-sucking emotions of fear and worry
Pray as you feel led


Ways you can help...

Life in Stills

Thursday, June 23, 2016

Update in June

Hello!

Yesterday was a GREAT day! Nathan brought his dog Sydney over. She is such a sweet girl! He made sure she was up to date on her shots and had her groomed at All About Puppies so that she could come hang out with Dempsey. While they were here we took Sydney for a walk while Dempsey rode his trike. Sawyer got to see what it's like what a well-behaved dog... not too tough. After the walk "Uncle" Nathan played a few rounds of Mario Kart with the boys on the Wii. So much trash talking! It was glorious.
A little bit later I dropped the boys off at Granny & Granddad's house while I went and bought us a new pool! I found the 10 foot round pool at Big Lots after looking at WalMart and Target. I would have done Amazon but I didn't want to wait even the two days... IT'S TOO HOT. My parents brought the boys home when the pool was 2/3 full. Of course, the boys wanted to go in it right then... so, they had an exercise in patience. They DID get to go in it though. They "swam" for about 30 minutes in the 6 o'clock hour. Now comes the battle of finding a chlorine alternative because... well, chemicals suck.

Dempsey is doing fabulous. He's had an easy week- that means no chemo. He will have labs tomorrow morning. Please start praying for next week. Dempsey will have 4 days of infusions with Monday being a LONG day. We will be protecting his little body with prayer and nutrition. Meanwhile, he is happy, chatty, energetic, fun, competitive, feisty, strong, triking, running, laughing, swimming, yelling (at brother), helping, learning, growing, strong, loving, smart, insightful, aware, curious... he is a normal 4 year old. This week I have noticed that I start to forget he is REALLY sick. That is a blessing and a curse. It's a blessing to feel normal but it is a curse because we are not normal. Dempsey is SICK! Dempsey needs to be cared for because he is SICK. We just soak up the good times/ days and try to pack up those memories and hold onto them when we have tough times/ days.

Sawyer had baseball camp last week and loved it. It was such a blessing from some friends. Along with learning the ins and outs of baseball, he also learned a little bit about himself and problem solving with a troublesome peer. Thankfully everything was resolved and ended on good terms. He had a playdate on Tuesday and loved it. He's been wanting to have this playdate for awhile and it's so hard to wait for. We are so thankful for friends who will take him and love on him for a few hours. Sawyer starts Chess Camp today. Another blessing from some friends. It's one hour each Thursday for 8 weeks and I can't wait to see what he thinks about it. This morning Sawyer helped our friend Ellen transplant some chard plants (started from seed). He got to get his hands dirty and... he liked it. I told him "You may be a farmer yet, Sawyer."

Jake is back to working full time. This is good and bad, for me. I know it does him a world of good to be back at work. It gives him distraction and purpose and that helps him be better for us at home.  When he is at home with us he is such a wonderful participant in life with us. Life is better when Daddy is home. He is a fabulous life partner and father. I appreciate how he is able to do so many home improvement things and how he takes the time to research options and such. I don't have the patience for that kind of stuff and he actually enjoys it. He is great at DOING things with the boys. Going on bike rides, cooking, legos, board games, games in general, light sabers, etc. He takes care of me well, too. The boys and I are truly blessed to have him.

Me. Well, I'm learning how to be a stay-at-home-mom (SAHM). It's hard. It's even harder because I'm an extrovert and I can't be very extroverted... I mean, I can't take Dempsey out to tall the places I'd like to go. I can't do all the things I would like to do. I am not built for board games, art projects, or science experiments. I don't enjoy those things and thus it is hard to get excited about doing them. Dempsey's leukemia journey is full of growth for me. I am working to accept this season and learn to adapt/ grow into the role I am currently required to fill. I am learning to LOVE my home and treat it as a viable member of this family. Beyond the house, Jake works to encourage me to meet up with friends when he's home with the boys. He knows this fills my tank. I try to make it to WACC each Sunday with Sawyer while my boys watch Dempsey so I can connect with the largest part of our support network. Plus, it's just good to be in the Lord's house. I miss attending Eastside but there just isn't a way to do that right now.

Please don't forget to check out the PLEDGE. It's a big need we have for Dempsey as we work HARD to keep him strong through cancer treatment with nutrition. There is a link to the Pledge's form in my signature. Please share the Pledge with family, friends, social media, etc. You just never know who God is going to use and how.

Well, that's a good update from up for now... HOW ARE YOU? Please let us know how you're doing and how we can support you.

Cheers.

Prayer requests:
Pray for miraculous healing of Dempsey
Pray protection over his body- specifically chemo effected organs
Pray protection over his mind and spirit
Pray against nausea
Pray against negative side effects
Pray for wisdom for doctors
Pray for wisdom for us
Pray protection over Sawyer... this journey is harder on him than he lets on
Pray over our marriage
Pray for restful/ restorative sleep
Pray for wisdom in all the alternative health practices we employ
Pray for strength and diligence for us
Pray for our support structure... we can't do this without it (YOU)
Pray for the insurance side of things
Pray that the road ahead is smooth


Coral Kenagy