Still Running this Marathon

Friends and readers,

I'm so sorry it's been so long between posts. Maintenance really is a time when things get "easier" from a medical/ schedule standpoint. We are down to nightly pills (mercaptopurine - 6MP), weekly addition of second chemotherapy pill (methotrexate - MTX), monthly infusions of a third chemotherapy drug (vincristine) and steroid pulses (prednisone), and quarterly lumbar punctures with IT MTX.

Beyond that, nothing is changing treatment wise. We are praising God still for His continuous protection of our boy. It is indescribable, the way that Dempsey is thriving and managing to "sail" through this treatment that is totally compromised of carcinogenic toxins being repeatedly ingested or injected into his precious little body.

Forgive me if I don't sing the praises of doctors and medical people... I believe the system is broken (despite the people in it having good hearts and honorable intentions) and the way my child is being treated makes zero sense to me. Yeah, I've read the studies that the docs get their protocol from. As any student who has taken statistics knows, data can be manipulated and lead to prove whatever outcome you're looking for. Lets not also forget that these medical professionals do not talk at all about the need to build up the body's immune system, feed it well with nutrient-dense foods, exercise it to help it detox/ process out all the toxins... No. Instead I have been told "The liver is a resilient organ... we are comfortable with pushing it to its limits and then backing off because it recovers well." What?! Continuing to push an organ to its limits is insanity, especially when that organ is already weakened by the presence of the MTHFR mutation - as is Dempsey's.

With all the research I have read, the experience we've had with Dempsey, the learning from others who have chosen other paths to heal their children... my goal is to end Demspey's treatment early. I don't know what that means, exactly, or how that's going to play out. He has 9 months left and that is just too many. He has another infusion this coming Monday and we will discuss the process of beginning his follow-up care early, meaning putting an end to treatment and really focusing on detoxing his body, building up his gut microbiome, and strengthening his immune system that has been beat down since April of 2016.

Please be in prayer over this situation. We need prayer for the following:

• wisdom for ourselves
• peace for all parties
• grace from me to whoever speaks to me
• calm discussions
• an open heart and mind from the oncologist
• agreement to end treatment early
• a willingness from the doc to listen to our hearts about ending treatment
• we need God to continue leading us along this journey
• if the Lord chooses to keep doors closed then we ask that he provide peace for us (me)
• that any negative effects of this journey on Dempsey are mitigated and removed
• that we can open medical eyes to the power of holistic modalities that are currenlty ignored or lacking education
• strength for Jake and I to stand our ground, no matter what may come from a system created by man
• that God will be glorified
• for me to keep my gun-blazing mouth appropriate and gracious
• even tempers for all
• articulate presentation of our stance and desires
• the Holy Spirit leads

Procedure Day || #1 at St Luke's

This morning as we were fixing to leave for St Luke's.

En route with our matchy-matchy boys.

The necessities.

You can grab dōTERRA's Kid's Collection by clicking here.

Brothers are the best friend.

Our goofnut playing on his phone for a few minutes post- port access.

 Getting ready for the main event.

Here you can see the main event taking place.

Yes, we were in the room.

No, I'm not sure it was a good idea... it was awful to watch them poison my son.

He sleeps off the sedation.

First foods? A Chocolate Peanut Butter NeoLife Bar, for the win!

Sawyer entertains himself while we wait.

Sawyer entertains Dempsey with Angry Birds Star Wars.

The Procedure Day tradition continues...

Chick fil-A.

FYI, he's drinking water. Hydration is vital.

Wrapping up the day with a dinner of eggs, sausage, and rice cakes.

Please pray that the Lord will open up a way for us to end his treatment early. There is no good reason to continue with these toxic treatments since he is already in remission (since 2016!). I have long desired to end his treatment early and I think we may be close to having that happen. Please pray for wisdom, discernment, open doors, open minds, support, faith, confidence, courage, determination, articulate speech, grace, and whatever else the Spirit lays on your heart.

Please take a moment to visit this link, and if you can watch the documentary.

I know several of the people in it. It's important and needs to be shared.

Please be part of the change.

Emotional, Psychological Advances

Dempsey has been really struggling recently with going to bed and staying there. He cites having bad thoughts... but we're going on a week now. The bad thoughts he has are about things that haven't happened and aren't going to happen. Honestly, this happens during the day, too. Something will get said or done and he'll start crying because it made him think a bad (scary) thought.

Y'all, I don't know what to do about this. I'm getting frustrated because this is EVERY night. He goes to bed fine and within 10 minutes he is out of his bedroom and in ours wanting to talk. Not really needing to talk about the bad thoughts, just talk. It doesn't matter if we sit down with him during the day one-on-one, nighttime still brings this scenario.

I'm getting really close to just making it where he's not allowed to come out of his room for anything other than using the bathroom.

We've done magnet work, prayer, positive self-talk, rebuking demons and negative energy, essential oils, exercise in the evening, no tech before bed, etc. We've done ALL THE THINGS. Still, he is out of his bedroom as I type, talking to Jake. Typically he wants me but I'm purposely not available. I know that sounds harsh but I'm really trying to figure out what this issue is.

Prayers for all of us as we walk Dempsey through what I think is a psychological leveling-up, if you will. My grace stores are naturally low but now it's cutting into the precious and coveted time I have with my man, one on one. We don't get that much right now because our support structure is back in CA. That's fine... but we still need our time and this bad thought stuff is messing with it. I want my boy to be healthy in all respects, and that includes his mental state. He is the priority right now as there seems to be something "wrong". I'm praying we can figure this out ASAP, get him back on a good routine, and get Jake and I some good hubby-wifey time again.

New Jammies!

September Update

Today, 9/26, Dempsey had his second infusion at St. Luke's here in Boise, ID. It went well, as normal. How crazy is that to say? An infusion of chemo at a children's hospital was "normal". Crazy reality. Regardless of our "normal", God has continued to tangibly show his faithfulness in ways we are deeply grateful for.

After today's appointment, we will be increasing Dempsey's weekly methotrexate (MTX) dose by half a pill. He will be going from 11.25mg to 12.5mg. This is a 5% increase. Yes, it's an increase, and I (Coral) am not happy about it, BUT the ONC only wants to increase it by 5% instead of 25% like most ONCs. So, I feel this is a safe increase and we will have a month (4 doses) under our belt by the time the next labs are run. His mercaptopurine (6MP) remains around 65%, for now. We will consider upping the 6MP by 5% next month, depending on Dempsey's numbers. The ONC's plan is to alternate the drugs we increase month-to-month. So, Sept is MTX and Oct might be 6MP.

The reason for this increase is because Dempsey's ANC (Absolute Neutrophil Count) has been consistently higher than desired. This whole cancer treatment is a balancing act at best and a science experiement at worst. Nevertheless, God is in control and we are doing our best to protect Dempsey's body. It seems like the Lord's favor has covered us as we've used the breadcrumbs he left for us - praying community, NeoLife, doTERRA, AmTryke, trampoline, organic foods, etc... remember Dempsey's winning equation? (see photo below)

Okay, so, we've been in our rental for two week now. It's glorious. The boys love having their own room (together) with separate beds. We enjoy being able to sprawl out over 1,00 square feet and having a yard for the puppers. Life is good. We've been exploring the Treasure Valley a little bit more each week, covering just about all the cities in the valley. We are trying some new burger joints, tons of new parks, at just plain old driving around to take in the sights.

We sincerely appreciate your prayers and financial support as those are sustaining us through Dempsey's journey. This Idaho faith journey has been a miracle in its own right and we are grateful to be allowed to travel it. Please continue praying for this Idahome journey of ours. We can use all the spiritual support we can get. Also, please follow our Idaho journey on my Making Idahome blog via my website.

Dempsey's Winning Equation

GOLD is for Childhood Cancer

September is Childhood Cancer Awareness Month. If you think childhood cancer is "rare"... you are mistaken. Think about this: a college stadium of 91,250 kids die EVERY YEAR from cancer.

Our favorite places to give are:

@teamdempseykenagy - www.paypal.me/coralkenagy

NEGU: Jessie Rees Foundation

KICKcancER Movement

MaxLoveProject

It's Like Jesus

The sand is our sin and Jesus is the water... he washes our feet.