Maintenance || Phase 2

Okay.
So.
Um.
Well, Phase 2 of Maintenance started today.

What does that mean...
He had his port accessed (needle in chest), sedation, another lumbar puncture (needle in spine) with an injection of methotrexate (chemo- MTX) into his cerebral spinal fluid, and an infusion of vincristine (chemo).
He starts 5 days of steroids tonight and continues his nightly mercaptopurine pill (chemo- 6MP).
He will have weekly doses of oral MTX on Tuesday throughout this phase.

This repeats two more times (once without the lumbar puncture): in one month and then in two months.

Nothing new will be added in this Phase- praise God.


Dempsey had planned, in advance, that we would go to Chick fil-A for lunch after procedure and then to the Santa Ana Zoo. So, we did just that. It is always remarkable to see him RUNNING around after having a needle in his back just hours prior. God is so good. I really do try to lean into Dempsey on days like today. Let him lead. If he's okay, I work to be okay. If he's not okay (rare), I work to be present with him in that.  He did end up falling asleep on the drive home and we let him sleep at home too- 3 hrs. Hopefully he sleeps tonight.

The zoo brought a beautiful gift from God just for me. I was watching this lovely mom and her precious daughter on the playground. I told Jake, "I know her." He chuckled because of course I did. I called the mom's name and she looked around. I stood up from the bench I was occupying, raised my sunglasses, and she about had a heart attack. Such a big bear hug! The kind of hug someone you've known you whole life but haven't seen in at least a decade, maybe longer, gives. It was THE BEST! Of course we talked and talked and talked. I'm not sure if Jake was jealous or elated about his alone-ish time. So much has happened in both our lives and yet the encounter was as comfy as fuzzy slippers. We just slipped back into the connection of our youth and marveled at the hands life has dealt us.

Oh, I should let you know that Dempsey's liver enzymes are back above 1,000 again! *Infuriating* The doc says "we'll keep the 6MP at full dose and watch and see what his labs are next week". Um, my child isn't a science experiment!! Y'all, I need Divine guidance here. I'm about to lose my $#!&. This is the SECOND time his enzymes have skyrocketed and I KNOW it's because of his MTHFR mutation and the dosage of MTX/ 6MP he's receiving. I'm so livid I could spit. I'm planning to print out a bajillion studies showing the correlation and causation between MTHFR & MTX/6MP dosing and toxicity. The docs have to listen, right?

Pre-procedure

Post-procedure

Drive to lunch

At Chick fil-A (drama boy)

At Santa Ana Zoo

At home catching "zzzzz"

PRAYER REQUESTS
Pray for wisdom
Pray for truth to make itself visible
Pray for intentionality
Pray against negative side effects
Pray for strength and courage
Pray for health
Pray for opportunities to share about holistic protocols and the Lord
Pray that doctors will be open minded
Pray that ears will hear and eyes will see
Pray protection over Dempsey's liver
Pray that we will never miss Divine Appointments
Pray that we make the right decisions
Pray for peace and endurance
Pray for recuperative rest
Pray that my (Coral) PTSD would vanish
Pray for open doors
Pray that we will always keep a Right perspective
Pray for our marriage
Pray for Sawyer's brother-heart
Pray for advancements in childhood cancers
Pray for Divine partnership opportunities
Pray as you feel led

Fundraising

PayPal.me || YouCaring

Upcoming

Tuesday March 7th:
Dempsey has another lumbar puncture with IT MTX (chemo injected into his spinal fluid)

Currenlty there is a book drive running through Usborne Bookes and More. Get in on the action before it ends- March 11. Click HERE to be taking to the book drive site and shop till you drop. Plan ahead and even make a list of those you could buy beauitful and fun books for:

• your kids
• your nieces and nephews
• your grandkids
• babies who are on their way
• your students
• your church's early childhood department
• your own personal library
• neighbor kids
• friends' kids
• your little siblings
• coworker's kids

March 25th is a busy day:

• Lula Roe Fundraiser for Team Dempsey by Erika Radel at 10am. If you are interested, message me on Facebook and I will add you to the private event. There will be an online option for those out of state or unable to make it in person. If you want to go in person, contact me for the address. It's in La Habra.
• NEGU Gala at the Disneyland Hotel
  We are going as CHOC's special guests! Woohoo. Please be in prayer about the connections we will make at this event. Pray that we will also be a light to those that need it. The Jessie Rees Foundation is a remarkable organization. If you are unfamiliar, please visit their website or Facebook page to learn about them and then SHARE, SHARE, SHARE them with everyone so no one is left in the dark- or without JoyJars®.

Friends, we are so thankful for your continued love and support. Your prayers are instrumental in the success of this journey for Dempsey and the rest of us. We are aware that this journey is unlike the normal journey for cancer kiddos and we are grateful. As it stands, we still have 882 more days of treatment. You can see that we still need you! :-)

-----------------------------

Personal Fundraisers for Team Dempsey

PayPal.me & YouCaring

Usborne Book Drive for CHOC in Honor of Team Dempsey

Readers,

PLEASE help us help the CHOC cancer clinic and the Child Life Department boost their inventory of NEW books (never used, it's a germ thing)!

Often times these poor kiddos are hooked up to tubes and power towers for hours on end. Wouldn't it be awesome if they could pick out a book for themselves to read or an activity book to help pass the time and distract them, even for a moment, from their sad reality?

That is exactly what Team Dempsey wants to do. We have partnered w/ a fellow cancer mom to make this book drive happen and WE NEED YOUR HELP! Not only will this drive benefit CHOC, it will also benefit this mom, AND one of my most favorite organizations- MaxLove Project. It's not offen that we are given a "win-win-win" situation but this is certainly one for the books. See what I did there? 

Follow this link and shop away!

https://1111268.myubam.com/

Here's how this works:

-You can order for yourself, and Usborne will give a 50% credit, for me to shop with. 

-You can order directly for the drive, with FREE shipping, AND a 50% credit for me to shop with. *Choose "ship with organization" at checkout, to use this option*

Thank you for making a difference in the lives of these precious kiddos fighting cancer! ❤

Please share this post with yoir social network peeps and even email it to all yoir contacts so we can maximize the benefit of this drive.

Cheers & God bless,

Team Dempsey

Fundraising Update

A few people have asked where we stand on our fundraising endeavors. Here is a little image and then an explanation of a bigger picture.

*these figures are for 2017 forward

I know that I stated $15,000 was our annual goal in a previous post, but I really think it's closer to $17,000 as we factor in the cost of his supplements. I've also included a conservative estimation of this entire journey's cost to us (out of pocket).

I have checked over our various fundraising avenues and it looks like this is a close representation of the funds Team Dempsey has received this year.

In order to give you a more accurate depiction of this financial journey, I will need Jake to do some research into the billing side of things. I hope to update this post, or create a whole new one, in the not-too-distant future. *updated to reflect all donations we have record of*

Keep in mind, this is a marathon... we still have 885 days of treatment. We will need to raise this amount again for 2018 and again for 2019. *Note: my pride is warming the bench**

We are praising God for his complete protection and provision of our sweet boy (and family). Dempsey still hasn't suffered any of those pesky negative side effects. Sure, he's allergic to a class of drugs and we had that liver enzyme issue... but nothing has landed him back in the hospital like we were told they would- and frequently. God is so good!! He is answering your prayers the way we want them answered and that is awesome. Still, I live in daily fear that the other shoe is going to drop. The doctors did their job in evoking enough anxiety for me to take this journey seriously and that means I cannot fully enjoy the blessing of Dempsey's AMAZING health/ strength because I am always expecting the doctors words to come to fruition. You could pray about that for me.

Our fundraising endeavors are listed below:
PayPal.me/coralkenagy (select "friends and family" and 0% will be deducted from your donation)
YouCaring
Many have given check to us personally and even envelopes of cash.
I'm hoping to do an Instagram fundraiser in April to commemorate the anniversary of Dempsey's diagnosis and perhaps another Chick fil-A fundraiser for the anniversary as well.

PLEASE LET ME KNOW IF YOU ARE INTERESTED IN COORDINATING/ HELPING WITH ANY FUNDRAISING OPPORTUNITIES!!! Help is always welcome and appreciated.

Let Them Come

This book was included in the most recent Boost of Joy box. It's the story behind NEGU and Joy Jars and www.jessie.org.

As I read a fellow cancer parent's journey, so many emotions resonate with me. The heartbreak. The fear. The faith. The questions. The resolution. The purpose.

I am more eager to meet Erik Rees and cisit the Joy Factory in Irvine.

I haven't completed a book in at least a year but I think I shall finish this one in short order, despite the hard and beautiful topic. Silver lining to having one's back go out.

If you haven't heard of Joy Jars or Jessie Rees, do some Googling and let your heart be touched. Pure inspiration.

Splurge: A Movie Night

As I mentioned in the previous post, we broke the technology fast for a movie night last night. What a treat!

We watched Song of the Sea. Oh. My. Goodness! If you have not seen this movie you should totally watch it. It's simply beautiful. The art, the story, the Irish-ness. It's unlike any of today's cookie-cutter movies, and I fancy that.

Not only did we watch this wonderful movie, but we ate popcorn too. Not the best popcorn but definitely not the worst popcorn- when it comes to ingredients and clean-ness (health wise). I drowned it in melted Kerigold butter (good, healthy fat) and ground some Himalayan salt over it. Yum! The bowl from which Dempsey and I ate made it all the more special because it was his NEGU bowl from the most recent NEGU Family Fun Pack. Dempsey was not happy that he only got to eat about 1/2 of the popcorn in our bowl. Hahaha. He scoped out a second bag of popcorn in the kitchen and was perturbed when I told him that had to wait for next week's movie night.

Dempsey sat/ snuggled with me and Sawyer sat/ snuggled with Jake. It was wonderful. Jake and I were both surprised how engaged Dempsey stayed through the whole thing (except for a potty break). He truly understood the art and his questions were good and in line with the story. Sawyer really enjoyed the movie as well. Although, that's not surprising because he's his father's son when it comes to movies. Jake and I talked about this movie for probably 20 minutes after putting the boys to bed. So many layers to unpack, discuss, and still some questions with no answers.

When the movie was over, Mr. Dempsey was a tad indignant because he wanted to watch ANOTHER movie (Stuart Little 2). A couple thoughts about this fact: 1. He had a nap so he wasn't quite as tired as the rest of us, thus not wanting/ ready to go to sleep and 2. This shows how there is still a tech addiction at play. We assured him Stuart Little 2 is on the list of movies we'll watch (I am less than thrilled about that) and he seemed to mellow out pretty quick.

What is next week's movie: Cinderella- the recent live-action version.

Feel free to share a movie you think the Kenagy-4 should put on their short list for movie nights.

**Sorry, I didn't manage any photos of the evening.

A Little Update

Nothing much to report here. That's always nice.

Dempsey is still at 75% dose of MTX and 6MP. That will likely change, for the worse, come Tuesday's lab results. I know the doctors will want to push him back up to 100% dose if his labs are good. I'm not prepared for a fight right now.
     God, please protect my boy during my weak times. Amen

This passed Monday I had a complete breakdown. Fully equipped with ugly crying, puffy eyes for days, accusatory words, emotional depletion and distance, depression... the whole nine yards. It was bad. Poor Jake bore the brunt of it but the kids felt it too. Thankfully I am married to a man who loves me enough to walk through the fire and that there is infinite grace at the Cross.

So, what was the straw that broke this camel's back? The fact that Dempsey would not help Sawyer fold laundry. He just would not. The ONE thing I asked them to do and Dempsey just couldn't find it in himself to obey me. Even with Sawyer encouraging him. Even with me talking in nice tones and spewing positive words. Even with less-nice tones and phrases that started to elude to threats. Nope. Dempsey could only muster tears and disobedience while the front of his body seemed magnetized to the couch.

Naturally... I LOST IT. Like completely blew a gasket or three.

Poor Dempsey had his spirit trampled. Not my finest hour. Not quite my worst, but still... He and I talked, when I felt the fire on my head and in my heart has lessened to a smolder. We had a good talk. I apologized. I explained the idea of this family being a team. I reminded him how much we need HIM to do HIS part on this team just like the rest of us do OUR part. I don't know... maybe it's a tad too much for a 5 year old to grasp but I know he's intelligent. I also know we're all allowed to have bad days. What is not allowed is disobedience. I tried to explain that I don't expect a smile or cheery attitude about doing what is asked but I DO expect him to DO it. We'll see what happens next time.

What did all of this result in? Well, we now have no technology (ie NO TV, iPad, iPhone, wii, movies, Kindle, white noise, Junior Stories, etc). It's been 5 days and we will break this tech fast tonight for a movie night. Then, back to no tech. Why the leap from disobedience to no tech? Because technology is an idol in my children's hearts (ours too probably, if we're being honest) and it hinders them from being obedient.

The reality of all this?
1. I have limits and I am not always aware of the speed at which their end is approaching or from what direction.
2. Life without technology is beautiful and PRODUCTIVE! We have spent more time playing together, exploring, learning new games, using imagination, getting work done... and "work" doesn't seem like "work" to them because there is no "better" option (aka technology).
3. Naps can still happen at all our ages and are a great way to reset our bodies occasionally.
4. Priorities are MUCH clearer and seem to be more easily attained.
5. We were- are- addicted to tech. This is a hard truth to swallow but acknowledging you have a problem is the first step in working to correct it.

There you have it. A little update.