DI Continues

Dempsey had more labs today.

This afternoon I received a call from CHOC OPI reminding us of his procedure at 10:30am with an arrival time of 8:30am. He will be NPO (cannot eat after midnight). He will be given anesthesia- again. He will be infused for hours on top of that.

IT IS TOO MUCH!! WHY MUST THEY COMBINE SO MUCH AT ONCE? His poor tiny body. Praising God that he is strong and resilient. Your prayers are working. They are helping our boy THRIVE through this ridiculous journey.

So, here's the schedule you can pray over:
Tuesday- lumbar puncture (needle in spine) and infusion (hours-long day)
Wednesday- infusions
Thursday- infusions
Friday- infusions

I believe we repeat this schedule next week as well. Happy Thanksgiving...

Currenlty, this mama feel like the anchor of a cruise liner. Suffocating under the water, feeling pressed by the pressure of that water, and being drug across the ocean floor- churning up all kinds of stuff and only to have it washed away to make room for more stuff. So heavy. The weight of this journey is... [insert grossly exaggerated adjective to describe unpleasant].

Dempsey is "fine". He has no negative side effects. Well, hair loss but that's not an inconvenience or anything. He has these little pimple-like bumps on his left cheek under his eye (other cancer moms call it "chemo acne") but that is even going away thanks to NEOLIFE/ Nutriance's Aloe Vera Gel and doTERRA's Anti-Aging Blend (Immortelle). Anti-aging... that sounds funny for a 5yr old. But it has AWESOME oils in it: frankincense, helichrysum, hawaiian sandalwood, lavender, myrrh and rose.

Dempsey:
still runs
still laughs
still rough houses
still argues
still uses manners
still climbs
still kicks soccer balls
still plays hockey in the street
still trikes
still plays monkey in the middle with Granddad
still eats better than the rest of us
still drinks his mass amounts of whole food supplements #dempseystrong
still watches TV
still plays wii
still colors
still loves the color RED
still watches his sugar and salt
still helps when asked
still pouts when he has to water the plants
still enjoys his detox baths
still loves watching JellyTelly shows
still wants to make scrambled eggs
still wants to learn new things
still wants to do new things
still likes to snuggle
still loves his blanket (that Auntie Tabitha made for Sawyer before he was born)
still loves his cheetah named Puppy
still loves playdates with friends
still misses "normalcy"
still asks when his port will come out (currently 1,020 days)
still loves Legos
still drinks a ton of water
still has chemotions
still sleeps well
still prays for others
still opens doors for people
still loves ketchup
still thinks of his brother in generous ways (such a sweet hearted boy)
still has hard days
But most importantly Dempsey... is still Dempsey.

We have much to be thankful for... now, if I could just clear away the darkness so I can SEE these things instead of just know they're there. Maybe I just need a few more days.

Sweet Creativity

It's raining fast because of coloring fast.
-Dempsey

Of course, my love.

Counts Too Low || More Labs on Monday

Dempsey did NOT make counts, again. He needs to be at 750 and is only at 694. I don't know why his body isn't rebounding like normal and that gives me pause.

I am not good at this cancer thing. I hate that his immune system looks like that of a yo-yo being worked by a master yo-yo-er. That cannot be good for such a little body (or any body).

Lord, please protect my baby. Help me strengthen the body you gave him. Lead to the right foods and care he needs. Give me peace, Lord. I try so hard not to worry. To lean into your proven faithfulness. I'm just scared, Father. Scared of something I do not understand. Help me to be teachable and patient. Help me to be ever-discerning of YOUR path for Dempsey, not what I would desire, for you know all. Amen

Change of Plans

So, there's been a change of plans.

Dempsey didn't make counts on Monday. His ANC was only 650 and it needs to be 750 or greater to receive chemo.

So, we wait.

Friday he'll have labs again to check his ANC level. If he makes counts that day then he'll move forward with treatment on Monday or Tuesday.

If all goes as planned then, Dempsey will have his last infusion on Thanksgiving. I think that's what Jake said.

Cancer doesn't understand holidays.

I hate cancer.

A Busy Week of Appointments

Please pray over Dempsey this week. He has 5 appointments in 5 days, 4 of which are for infusions. There are new drugs too.

It Came

We said we were ready.

We were not ready.

This is hard.

Emotionally.

Mentally.

Physically.

Parentally.

Every photo I take after this point is me grasping at hairs (not straws)... trying to hold onto them as long as possible. No, it's not because they represent his identity...

scroll on to see what I'm talking about.

In just two days he has lost handfuls of hair. Is he less than now? NO! If anything he is more. He is more courageous. He is growing more character. He is expressing more. Feeling more. Learning more. (**He just called out to me and said "That was a great salad, Mom.") He is so much more than his red hair!!

As each strand falls from his scalp I am reminded of what Scripture tells us. In Matthew 10 it says:

And even the very hairs of your head are all numbered.

So don’t be afraid; you are worth more than many sparrows.

The Lord tells us we are precious to Him. So precious, in fact, that he knows the number of hairs on our head. This means he knows what happens to those hairs and he cares so very deeply for the head those hairs belong to.

My precious boy is no different. God loves him and knows better what is happening to him (and why) than we could ever grasp. I find peace in that although comfort comes and goes.

So, why, then, is it so cotton-pickin' hard (I would usually use stronger language here) to watch as his hair falls out strand by strand... batch by batch?

BECAUSE IT SYMBOLIZES FAILURE TO ME.

I know this is irrational! I know I did NOT fail my son!

And yet, as his mama I feel it is my job to protect him absolutely. Something that I will never be able to do... yet I feel it is my job. If I cannot keep those hairs on his head then I have failed.

Don't bother trying to make this feel better by saying "You didn't fail him, Coral." I know, in my heart of hearts, that I did nothing wrong. Every other aspect of this child screams HEALTH and VITALITY. I AM/ WE ARE doing an awesome job. That isn't pride speaking... it's reality. It is hard. It is a worthy job. The Lord is providing for me in ways I never knew I needed. It is beautiful. Am I 100% successful? No. But you know what? That was never going to happen... is never going to happen. That's a number only God can reach. And praise him for reaching it always, without fail!!!

A super sweet, lovely young lady I've never met but feel super connected to, commented the following on my Facebook:

💔 agh. I'm a natural red head too. ( I say strawberry blonde tho lol) but like you posted and like I've learned... it is not our identity ❤ I'm not going to sugar coat this one because quite honestly I'm still dealing with accepting my short hair, but please know I will pray for your strength. My mom seemed to be more emotional about the initial hair loss phase than I was. If there's any light from my hair loss experience it was that I DIDNT LOSE IT ALL! ❤ there is hope! * big hug * ❤❤❤❤❤❤❤

Here was my response:

you bless me. No sugar-coating necessary girl! This is all part and parcel of this cancer journey. It is a bit harder, I think, for us mamas because we work so hard to keep our babies (even adult ones) safe and watching the strands of hair shimmering in our hands instead of on the heads they belong to signifies an aspect of failure on our part. Yes, it is imagined failure- we didn't fail- but it feels very real. I think of you often and pray over you, friend I've never met. ❤🙏😘

Even now, my Dempsey-boy is playing wii and yelling at the TV. It's glorious!!! He is still a goofball. He still runs. He still fights with his brother. He is still thoughtful beyond belief. He still feels/ loves deeply. He is strong. Happy. Vibrant. He occasionally asks, "How many more days until my port is out?" It's still hard to answer him with "Over a thousand, baby."

I work HARD to keep communication open- positive and negative. I need my boys to KNOW that I am a SAFE place for them to learn and grow in expressing themselves. My Sawyer has felt so safe he has told me, tears streaming down his face, "I hate you right now, Mom." I can receive that. I remember hating my parents too. Every kid does. Allowing them that freedom and safety allows for me to open up dialog and discussion where they can flesh out their feelings. It really is special... even when it's painful. This scenario is the same with Dempsey. Every time I brush his hair, run my fingers through it, brush off the fallen strands from his shoulders, or grip gently to remove the strands that have let go... I show him the hairs and give him a chance to dialog about it. Most of the time it's "Oh, that's a lot of hair." He is not scared by it. Since he still has red on his head I think he is just baffled at the amount of hair he's lost and how much he still has left. I'm sure he is processing all of this.

Jake and I keep reminding him that this is OKAY. This is part of the process and caused by his treatment. We shrug our shoulders and say things like "Eh, it's just hair and we know it will grow back" with smiles on our faces, joviality it in our tones, and resignation in our hearts. We try to make it a light topic so as not to evoke fear, yet give it enough space and time in our conversations to convey the notion that it is a very real thing to have feelings about. Feelings worth sharing. Tonight at dinner we were even talking about potential costumes Dempsey could wear with a bald head. We came up with: Mr Freeze, Lex Luthor, Captain Picard, & Professor X. Have any to add?

Please keep us in prayer. You have been so faithful with that so far. We are deeply gratfeul. We sense your prayers and the presence of God in our journey.

WE LOVE AND VALUE YOU!!

My website

www.CoralKenagy.com

is a GREAT thing to share with people in any stage of a cancer journey!

NeoLife Rally

If you are curious about learning more about the supplements we KNOW are keeping Dempsey stronger than other cancer kiddos you have the opportunity in January at the corporate rally events!!

I only have 8 tickets left for the west coast rally!

You want one? Comment on this post. First come, first served.

January 14th 2017 9am-5pm || I need to figure out lunch plans.

Ways to support our family

As always, this link shares practical ways you can help.

Just Photos