Biggest Need


It's not glamorous. It's not pretty. It's not fun. It's not creative. It's not ingenious. It's not smart. It's not comical.

It is endearing. It is powerful. It is helpful. It is necessary. It is provision. It is humbling. It is impactful. It is peace-providing.

You have two ways you can give: YouCaring & PayPal

Saturday, December 1, 2018

"I miss CHOC"

Dempsey, out of the blue, states "I miss CHOC."

So, I asked him what he misses.

He said "Well, they had that TV section..."

The Infusionarium? "Yes"

"And how nice they were."

They were really nice to him. They treated him well at OPI.

It makes me happy that he remembers the good things and not the things that caused my PTSD to go off the rails. That is God's faithfulness and provision and the multitude of answered prayers.

Thursday, November 29, 2018

A Change in the Wind

I don't quite know how to share what has transpired since my last post just 5 days ago. Let me give it a shot.

Dempsey had his monthly infusion/ lab appointment on Monday (11/26). Routine.

The way it works at St. Luke's is vastly different than it works at CHOC. Each visit at SL goes like this:
Check-in, waiting room
Port-in (needle in his chest), waiting room
Vitals, waiting room
Meet with the Dr (ONC) and a nurse

The Dr examined Dempsey and asked all the routine questions. Then he asked if we had any questions or concerns.

That's when Jake and I looked at each other and I stated "I would like to have a serious discussion about dropping the remaining lumbar punctures and steroids." Dr nodded, smiled, and said "Lets talk about that." So, we did. I mentioned how steroid psychosis is real and that I feel it's more damaging to Dempsey as a WHOLE PERSON than the perceived benefit. I went on to mention that I want to drop the 3 remaining lumbar punctures because I'm concerned about continuing to inject cancer-causing drugs into a cancer-free space.

To my surprise, the Dr was completely okay with granting my request. He even went so far as to say "Well, you're the parents... it's ultimately your call." He seemed almost eager to drop the steroid pulses. He feels that element is the weakest link in this phase of treatment because they are forced to forego the steroids with kids who develop osteopenia (or other bone compromising issues) and their treatment outcomes don't differ from those kids who took the steroids. Our ONC is a fan of not doing drugs if we don't have to. He has even conceded that we are probably overmedicating these kids... but we just don't know. He knows childhood cancer treatment is a guessing game and is willing to talk about that. He is well read and versed in the studies that are available and he is well read on the drugs they use.

So, as of Monday, November 26th, Dempsey will not be scheduled for any more lumbar punctures and will not receive any more steroids. THREE LPs and EIGHT rounds of steroids that will not be administered!! Praise God. This is a big deal, folks.

That was Step #1, and it was successful.

Step #2 will probably be getting his monthly infusions of Vincristine dropped. That would mean there would be no need for his port and we could consider getting that foreign body removed from his chest. One step closer.

Maybe Step #3 is ending treatment altogether - removing the remaining two chemo drugs he takes orally and a daily/ weekly basis.

If Step #3 is met, then we would hope to continue with this ONC for all of Dempsey's follow up appointments. I think they go somewhat like this: monthly for six months, quarterly for a year, semi annually for a year, yearly for a few years. We won't hear "cure" until 2024 (5 yrs post EOT, end of treatment).

Please continue to pray for us through this journey. There are so many variables and what ifs wrapped up in it, I cannot even begin to convey the weight of this journey. However, there are victories being had and healing is a day to day choice that requires intention and action. Dempsey's journey continues to impact others and bring cancer warriors to us. I am honored to be the sounding board, listening ear, encourager to warrior mamas who feel this close to losing there ever-loving minds.

This journey is a lonely one. It's isolating. It's scary. It's challenging on levels you can't fathom unless you've walked it. It can be so beautiful as well... but that takes some effort to see most days. The fear is deep and wide and the glimmers of blessing of joy flicker in the darkness for a short time. So, we run fast and hard to that shimmering in the distance and hope we run fast enough to catch it and hold it for even a moment.

WE STILL NEED YOU... in more ways than prayer! We still need monies to support the holistic methods we have employed, with great success, for Dempsey's thrivability. NeoLife continues to be the major element of need as that lays a more solid nutritional foundation for his body that keeps getting challenged by these drugs. doTERRA is the next major element of his holistic care as we do our nightly regimen of oils over his whole precious body. We have people who have chosen to pick one product and supply it each month... this is a wonderful option and I am happy to discuss how you can do that. Others have chosen to give money to us so that we can purchase the supplements and oils we need to maintain his regimens. Whatever money we are given via Venmo, PayPal, or checks - we deposit it all into Dempsey's Health (savings) account. Then, as we place orders and have to pay bills, we take money from the account. It has been a HUGE blessing to have funds readily available. We are still quite far behind, though. Dempsey's at-home protocol costs us about $1,000 per month.

All this to say, when you see Dempsey THRIVING, as he is, this is a direct reflection of the holistic health modalities we have employed for him alongside allopathic/ conventional treatment. When families ask for financial support, it's not because we are stealing from you (although, there are those fraudulent persons out there)... it's because insurance doesn't cover ANY of what we need to help our children survive and thrive through and after treatment. THIS is an atrocity. We are paying for healthcare... we should be able to get the treatment methods we desire covered! Consider this when you vote. Read up on health related propositions. It may not impact you directly, but someone you love needs to be educated, aware, and active.

WE ARE GRATEFUL FOR YOU! We are deeply appreciative of you who have continued on this marathon with us. It doesn't end when his treatment does. We will be walking a version of this journey forever. We hope you will hang with us.

Saturday, November 24, 2018

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

Thursday, October 25, 2018

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.

Sunday, October 7, 2018

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.

Wednesday, September 26, 2018

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