Grateful & Still Needy

The "Grateful" Part:

Dearest supporters... thank you! Thank you for your faithfulness to our family during this trying season. Thank you for your prayers, every single one is heard and answered. Thank you for your tangible blessings, they help us keep life moving forward. Thank you for your monetary gifts, we could NOT do this without them. Thank you for sharing our story, it garners us more prayers and opens doors for us to bring HOPE to others. Thank you for your encouragement, it helps us take our next steps and next breaths. Thank you for your offers, even though we do not accept each one the thought and heart behind the offer is never lost on us. THANK YOU for willingly walking this journey with us. The Lord is surely using each and every one of you.

The "Still Needy" Part:

Dempsey has ANOTHER lumbar puncture tomorrow morning. He cannot eat after midnight tonight. He will have a needle in his spine, again, with an injection of chemo into his cerebral spinal fluid. He needs your prayers! I truly believe your prayers, along with ours, are what protect Dempsey from all the potential crazy of this journey.

Yes, he typically sails through these procedures. However, there is fear and worry EVERY SINGLE TIME. It never gets easier watching them knock him out and then waiting as he comes to again. No child should ever have to endure such things! Ever!

Our baby needs your prayers. More of them. All the time. Every day. For everything I've ever listed. I am a desperate mama here, folks. Fear is real. Trauma is real. Stress is real. Anxiety is real. Anger is real. Your prayers help me (us) find the HOPE, the JOY, the Lord's FAITHFULNESS, God's BLESSINGS. We need that.

We still need to raise $15,000. This is embarassing. It's demoralizing to need so much help for so long. We will need another $30,000 on top of that before this journey is over. That's insane! For every cent that is given I feel the Lord's fingerprints imprinting on my life and simultaneously feel my ego take a hit. I know the latter is supposed to be a good thing... a sanctifying thing... and it is. It also HURTS like the dickens. It's painful to be laid so bare before you all but I do it because my baby needs your help more than I need to keep my pride.

For those of you who are leary of PayPal or have had issues trying to donate to Dempsey this way, I created a YouCaring fundraiser. Keep in mind, PayPal takes NOTHING if you select "friends and family" while YouCaring takes about 3% (via WePay). Either route you choose, we are so thankful you chose- period.

Things We Will Need Soon

Hello #TeamDempsey Supporters!

As I look around our house, I notice there are necessities that are running quite low. If you feel inclined to bless us in this way, here is a list of items we need (soon).

1. LAUNDRY DETERGENT: (we typically get it from Amazon- links provided)

• Charlie's Soap (http://a.co/hnA7vJr)
• Charlie's Soap Laundry Booster (http://a.co/fULC9m2)

2. DETOX BATHS: (walmart.com seems to be the cheapest)

• Baking Soda (https://www.walmart.com/ip/Arm-Hammer-Baking-Soda-192-oz/17043412)

1. We work to keep germs to a minimum, we do A LOT of laundry! Every time one of us is in a place we don't visit much or with a lot of people or... or... or... we come home, strip down, shower, and redress. This makes for A LOT of dirty(ish) clothes and many, MANY loads of laundry. We are picky about our detergent too. So, this is the brand we have settled on based on our current criteria and ridiculous hard Whittier water.

2. While Dempsey receiving nightly chemo (pills) and weekly doses of methotrexate (pills), he is taking A LOT of detox baths! By "a lot" I mean at least 4 per week. Each bath requires 2 cups of baking soda... so that's 4 x 2 = 8 cups per week (at least)!! But when you see the results of our alternative therapies/ protocols how can you doubt the need for these things?

I will surely continue benching my pride, ego, and independence if that means I can get help providing what our son NEEDS to thrive through treatment.

The Lord has blessed us with YOU as our amazing support structure and you have not failed us yet! You are incredible. You are faithful. You are the hands and feet of Jesus. Thank you!!

Please keep the following in mind:

We will be trying to raise $15,000 by April to cover the up-front out of pocket costs that Dempsey will incur due to his necessary treatment. If you would be bold in your sharing of Dempsey's story, our need, and his awesome success thus far, we would be deeply grateful. The more that know, the more that can pray, and the more support we can obtain. This is a marathon and we need you. It is hard to ask for help. Like, REALLY HARD. We have no choice. We cannot do this on our own! Trust me... if I could do this without help I would. But I can't. We can't. Dempsey needs you and he needs people to know his story. His story, by the way, can be found on my website: www.CoralKenagy.com. Please share, share, share- in conversation, on social media, in print, texts,  Morse code, even smoke signals.

If you have fundraising ideas or want to offer your services/ skills, please contact me.

Prayer Requests:

Miraculous healing of Dempsey

God opens unusual doors of progress at CHOC

No negative side effects

We will be salt and light to this world and in this mission field (journey)

Sawyer's brother heart is protected and that he never feels cast aside for any reason

Dempsey's mental health, emotional health... all over health

Treatment is successful

God removes the chance of relapse from Dempsey's future

PTSD is manageable and eventually non-existent

Our marriage- may it remain strong, we remain focused and open with each other

That we overflow with grace toward each other (24/7 togetherness is tiresome)

We will begin our day in communion with the Lord so each day is truly HIS day to use us as he pleases

For our support structure- we need it for the long haul and beyond... we are not naive to know the toll this takes on others as well

We are obedient to the Lord

We always work to keep a right and true perspective of this journey

That each day we take a step toward effecting change of the broken medical systems

That my posts always point to God... even if they are dripping with my broken humanity

Pray as you feel led, always leaving room for the Holy Spirit

MAY GOD BLESS YOU!

www.paylpal.me/coralkenagy "friends and family"

New Year Update

Just a simple update on Mr. Dempsey:

• No CHOC visits this week
• Still no negative side effects from drugs
• Monday's labs were awesome
• High energy
• Conquering pill taking (he can now swallow the pill quarters with mashed bananas)
• Chemotions are very real- doTERRA's Comforting Blend (Console©) us a MUST
• Dempsey is in Maintenance phase now until August 5, 2019 (only 946 days to go)- he will be just shy of 8 years old
• Growing as a healthy child, increasing in weight as a healthy child, learning as a healthy child

A typical day includes some or all of the following:

• NEOLIFE Shake breakfast (with supplements)
• wii time
• Apple TV time
• Legos
• Reading
• Drawing
• Trike riding
• Running
• Playing with Sawyer
• Costumes
• Smoothie (with supplements)
• Shower or detox bath
• Oil time (28 essential oils)
• Sundays are Burger Day
• Snacks & meals (carefully watching amount of processed foods, salt, and sugar)
• Painting
• Writing
• Disagreements, attitude, stomping around, tears... like a normal 5 year old but perhaps a bit more often thanks to chemotions
• Playing with his "puppies" (aka 2 stuffed cheetahs and 2 stuffed ocelots)
• Singing
• Jokes
• Laughing
• Dancing
• Praying
• Cooking (he's really good at making scrambled eggs)
• Helping (he loves to help... most of the time)
• iPhone games/ texting Sawyer and then having Siri read the message aloud and giggling as she says the message explaining the emojis

So much of life is normal around Kenagyville. So much of life is abnormal, too. We are grateful for what we have! We cherish what we are able to do. We long to do that which we can't. We continue to need your prayers and support.

Emotional Depletion

Clearly, many of these posts are more about a mom's persepctive/ experience than the child this blog is named for. I don't know how I truly feel about that since this blog was started as a way to log FUN things, CUTE milestones, SPECIAL memories. Now, it's a journal for me to log Dempsey's war on leukemia. So many feelings with that.

It's no secret Dempsey has trouble swallowing pills. No matter how small we make the pieces his little tongue seeks them out, separates them from their transport solution, and hold them in his mouth. This is a failing on my part. I have not taken the time to train him on swallowing pills. Why? Because it's overwhelming. The sheer thought of working with him, getting him from failing to passing with flying colors, appears to require more strength and stamina than I currently possess. Honestly, I don't know if I will ever possess the tools necessary for such a task. Believe me, I know that I should be digging deep, deep down into the recesses of myself to summon the ability to tackle this task... however, my arms are too tired from swinning a stormy ocean, trying to keep my head above water to try and pick up a shovel to dig to a depth of unknown existence.

So, perhaps you can kinda sorta maybe begin to imagine, now, what it felt like yesterday to stare across the hours knowing that we would have to get Dempsey to swallow not just one pill... but SEVEN. Yep, SEVEN. *cue fainting spells* Granted, six of the seven were small... but still. That multiplied the mountains we needed to conquer.

I'm not an optimistic person by nature so my natural tendency is to acknowledge the good, say something positive, and then run straight into the halls of mental negativity. In those halls I play out all sorts of possible hurdles, failures, what ifs, etc. Pep talking myself is EXHAUSTING. Words of Affirmation is the absolute BOTTOM of my love languages. What do I do, then? I fake it till I make it. Seriously, I should be nominated for an Oscar. You would nominate me too if you actually saw the difference between what's in m head and what's being portrayed. I'll dust off a space for that award now.

I had dropped in little conversations about needing to take a lot of pills throughout the day so Dempsey would have some preparation time. I find it exponentially helpful to frontload my kids so they can attempt to prepare themselves and we can build trust. I hate when people lie to their children, tell them a shot or procedure "won't hurt" and then the child experiences the pain we all knew was coming. That doesn't build trust. Instead, I tell my kids there will be pain. It will hurt. But it won't last forever and I'm right here. When they pain comes, they see that I was right. When the pain leaves a little bit later, they see I was right once again. And when they see I'm right there with them, they see not only that I was honest but that their comforter is dependable.

Pill time came.

I cut every pill into the smallest pieces possible. The night before we discovered that bananas helped Dempsey swallow all the pieces with a bit more ease. So, he asked for bananas to help him this time and I obliged. I dropped the pills into a glass bowl, each one making a slight sound as it hit the glass. I sliced up bananas and then mashed them in the bowl with the pill pieces until all the pills were coated in banana essence. All the while, I'm feeling adrenaline surge through my body.
1. Is he going to be successful?
2. Is he going to be unsuccessful?
3. Will there be joy?
4. Will there be tears?
5. Dear God, will there be vomit? I can't handle vomit. I really don't want there to be vomit. Well, at least he's in the tub.
6. What if this takes hours?
7. What if he gets them down in record speed?
8. How do I encourage him? Encouraging people is exhausting.
9. I hate cancer. I hate chemotherapy. I hate not having choices. I hate this, I hate this, I hate this!
I take the bowl of mashed bananas and pill pieces into the bathroom where Dempsey is detox bathing. I also brought a cup of water for assistance, as is our custom. He took the first bit. A bit of mulling it around and down it ALL went. All of it! Pill pieces and everything!!! Hallelujah! Second bite didn't work quite as efficiently but the rest of the bites were total successes. Oh, praise God!! A thousand more positive words flow from my mouth to my baby's ears.

When I asked Dempsey, "How are you feeling?" His response touched me so deeply. He said, "... happy cry...". He was so proud, so happy, so thankful to be done (and with relative ease) that his eyes and emotions were all about happy cry.

I do believe bananas are our thing for the time being. I can live with bananas. Now I'm just praying he doesn't develop an intolerance before we get him to swallow whole-ish pills.

But now comes the recooperation period. Y'all know adrenaline doesn't just up and leave. Nope. It hangs around a little while, knocking things from their resting places just to make sure you know it's there. This phase brings the guilt of not believing this was going to be easy. The guilt of feeling like a lowsy cheerleader. The joy of it being an easy task this time. The resentment of having to do this at all. The acceptance that this is our life for the next 3 years (not seven pills per night but at least one pill every single night). The thankfulness that bananas are gold right now. The fear of him never being able to swallow pills without me or Jake present (this is scary because that means we have a curfew of 8pm every night for three years).

Just when I start to get a grip on adrenaline, fear sets in. See, it's bed time now and Dempsey has seven pills worth of chemo in his stomach. Sure, I made him drink some Aloe Vera Plus to help stave off nausea or ulcers caused by the chemo... but still. It's the first time he's had this drug in his system in pill form... that means new territory which means the potential for new side effects. Suffice it to say, I didn't sleep well. Waiting for all the possible go-wrongs.

I wake up not rested. Fearful of what awaits. I quickly start praising God when I hear a happy go lucky Dempsey in the living room. He's fine. He's happy. He's feeling "fantastico". Even now, 9:45am, he is still running around, playing with Sawyer like a normal five year old. Thank you, God!!!


Prayer requests:
Pray as you feel led- I don't have strength to come up with a list right now.

Recent-ish Pics

You Have to Look for It

Waking with a knot in my stomach is par for the course on procedure days. Today was no different. You see, Dempsey had ANOTHER lumbar puncture- where they inject methotrexate into his cerebral spinal fluid to prevent the cancer cells from blasting into his brain. Okay, so I like the theory of keeping cancer out of my baby's brain but the method is all too unsettling. In addition to the lumbar puncture (LP), Dempsey also received an infusion of vincristine. Like any other LP the whole family went to CHOC OPI. Dempsey wasn't allowed to eat after 12am and his procedure was set for 9am. We had to arrive by 8:15am.

This day was a tad different though. At least as far as Mama Bear was concerned. You see, I've been learning more and more on this journey and today I was going to apply a little more pressure to the people that I felt needed it. And then God shows up.

The nurse we were told we would have was swapped out with another. The normal doctor who performs these procedures was on vacation. The anesthesiologist happened to be my favorite one. A new-to-CHOC oncologist (brain specialty) accompanied the procedure doc into our room and I lost my mind... for a good reason.

Lets start with the losing of my mind. I was shocked and happy to see a familiar face. By familiar I mean a face that met in 1998 when I was a senior and she was a freshman in high school. That's right, folks... almost 20 yrs ago I met Ashley. Even back then she was destined for the medical world. (Lets take a moment and pray that God did not bring the brain cancer doctor into my life for my family.) Anyhow, it was a divine appointment and I'm grateful to see this beautiful face in real life again.

Okay, now, let me unfold the rest of this novel about God showing up.

The original nurse we were supposed to have, Hazel, is a familiar face and we like her. We've met the nurse who ended up with us, Sabrina, and we like her too. She is acquainted with doTERRA oils so it was comfortable to talk with her about our use of them on Dempsey's journey. She is a healthy eater so it was comfortable talking with her about our eating habits and when/ how we splurge (burger days). Her family were immigrants in the 60's. Fast forward, her mother is suffering from auto-immune issues that have roots going back to their immigration to the States. *super sad face* She was a joy to have around and a blessing to talk to. Amid our long conversation (Jake was making appointments and picking up meds from the pharmacy) she told me "You are like the 1%..." What she meant by that is my knowledge, application, interest, involvement, etc is way above the "normal" cancer parent. This is a truth that makes me sad. Proud, but sad. I'm saddened that every parent isn't attacking this journey like my family is. I'm grateful that I have met an elite group of friends who are very similar to me in a similar journey of their own. Sabrina gave me such validation and was so encouraging.

Remember my favorite anesthesiologist? Yep, Tony ranks #1 on my list. Today he just proved his placement a worthy one. I was talking to him about the specific drugs used for sedation. I asked about removing one of them from use. He dialogued with me awhile and we settled on a plan or compromise. I had complete peace about it. He slightly elevated the dose of one drug and significantly decreased the dose of the other. He encouraged me to watch Dempsey and note my thoughts about how he came out of the sedation this go-round. He said "If you're happy with this method just tell the next anesthesiologist... and let me know." When we were talking about the drugs he was very interested in my thoughts and reasoning and he was intentional and engaged in his response. Most times I feel like the staff is rushing through my questions in an effort to get done with me to move on to the next patient. It's unsettling and irritating. As I was talking with Tony, I was sharing Dempsey's genetic concerns and various facts. He looked me square in the eyes and said, "You need go give a lecture." When my soul stopped quivering and the goosebumps subsided, I responded with a half chuckle, half exhale of "Okay..." He said, "No, I'm serious." He went on and explained that CHOC has these weekly (I think) meetings where medical staff, parents, and community members gather to listen to a speaker, etc. He encouraged me to check it out. Well, he said he would get me the information. I gave him my business card so he could email me information and then email him my thoughts on the sedation drug combo. I look forward to dialoguing with him, even if it's digital.

Now, the doctor performing the LP. She was just lovely. Her bedside manner was delightful. Her communication was warm, inviting, and engaging. She was genuinely interested in my questions and was focused on answering them if she could. She was aware that we are looking into the NUDT15 test. She understood my interest in it and made sure to pass on the reality that this test is typically used for those patients of Asian and Hispanic descent. I expressed my knowledge of that reality and explained about Dempsey's other genetic hiccups and how I really just wanted as much knowledge about the hidden parts of my son so that I can help him to the best of my ability. She was obliging and encouraging. Refreshing. She made comments about God too... especially so regarding the shirt Dempsey was wearing. He was wearing one of his many "This cancer kid is powered and protected by NEOLIFE" shirts. She read it and said it needed to say "God" on there too. She's right! One of the best moments of my encounter with her was when she relayed to me a discussion she had with Dr Horvath (who I respect greatly). The two of them had decided to start Dempsey on the lower dose of 6MP (nightly chemo pill) instead of the higher one. What an answer to prayer!!! Dempsey is on the cusp and could go either way- lower dose, higher dose. I am relieved that they chose the lower dose.

So, lovely nurse, wonderful anesthesiologist, pleasant surprise from the past, delightful doctor. All these things are gifts from God today. Friends, it really felt like God spent the day with me. What an honor. So much peace. So much joy. So much encouragement. Divine.

Now, on to lunch. We went to Chick fil-A at the Irvine Marketplace. We'd been there once before. The boys love it because it has a playplace. Dempsey promised he would be extra careful and let us know the moment he felt pain or anything out of the ordinary. After the boys finished their food the trotted off to play- carefully. A father and his young son were seated behind us. Shortly after our boys left the table his son joined them in the play area. A moment later the father, named Eric, came over and said something like, "I don't normally do this but I was listening to you talk and I was noticing your body language. My wife and I have the same poses. I sense there is a lot of pain in your journey and would like to offer to talk about it." He went on to share about his family's story. What a story it is! He shared about all the challenges his 7 yr old son, Ethan, faces every day. He told us about his young son, Matthew, who was with him. He shared about his employment issues stemming from a recent move out here from the east coast. By the time we were done it felt like we had offered him as much grace and understanding and he had given us. Another divine appointment. I gave him my business card and told him I would be expecting contact from his wife. Sweet moments.

After lunch came a trip to the zoo, complete with Old Navy flip flops- because when we left the house the zoo wasn't on the agenda. As we were pulling into our parking space, I see this woman at her car with her little girl in the stroller. I told Jake, "I know her." He goes, "Of course you do." Hahaha. I got out of the van and went over to the woman. I asked sarcastically, "Are you coming or leaving?" When she looked up I received a smile and a friendly hug. It was another divine appointment. Talking with Sarah went a long way to fill my extrovert cup. It was precious to catch up face-to-face. She has been following our journey and prays for Dempsey regularly. It is so special to have so many members of the Body praying for us. I told Sarah, "It pleases me to know that y'all are praying us through this journey because there are so many times where I'm not praying... or even feel like I can't pray (fatigue, emotional confusion/ emptiness)."
I met up with my guys and we walked around the Santa Ana Zoo. I found them at Spirit's exhibit (the female bald eagle). Dempsey fell asleep on the drive home after a bit of walking and yes, even running and climbing on the zoo's playground. What a gift it is to see him so strong after having a needle and chemo in his spine just hours earlier.

You have to look for it. You have to look for where God shows up. You have to look for what God gives you. Sometimes the blessings are wrapped in bows... other times they are wrapped in trials. Remember this: if we knew what God knows, we would ask for exactly what He gives us. It's not always pretty. It's not always fun. It's not always glamorous. The meaning is not always apparent. But it is always for good somewhere. We are not alone in this life and we need to remember two things:
1. enter into the suffering of others to help them with their burdens
2. allow others to enter into our suffering to help us with our burdens
God's fingerprints are EVERYWHERE... are you looking for them? Is there something you still want but have stopped asking for? Start asking again. Keep in mind, "No" is a valid answer and he knows your heart and your needs.

Prayer requests:
Pray against negative side effects of drugs
Pray for miraculous healing
Pray protection over every part of Dempsey's body
Pray protection over every facet of Dempsey (mind, spirit, emotions, body, etc)
Pray wisdom for the medical staff involved in Dempsey's journey
Pray for discernment for me (mom)
Pray for courage for us all
Pray that the Lord helps us teach Dempsey to swallow pills (he has over 1,000 to take over the next 3 yrs)
Pray against complications
Pray against toxicity
Pray safety over Dempsey
Pray for balanced emotions despite chemotherapy and steroids
Pray for divine direction for us as a family
Pray that problematic neighbors will miraculously be awesome (I really don't need any more stress)
Pray against colds, fevers, flu, viruses, germs, etc
Pray that we can maintain Dempsey's supplement regimen
Pray that we can maintain Dempsey's essential oil regimen
Pray that we are given the knowledge we need when we need it and how we can understand it
Pray over our marriage
Pray over our family's relationships
Pray that we will always be salt and light in the world
Pray that we will unite the Kingdom with purpose
Pray that our children will always be beacons that point people to Christ
Pray that we never miss an opportunity to advance the Gospel
Pray that we are sensitive to divine appointments and that we never shy away from them
Pray that we are always in tune with the Holy Spirit so we can sense His promptings
Pray that we will find rest and physical healing
Pray protection over all facets of us as well
Pray as you feel led

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Up Next

Well, tomorrow (Monday) brings labs for Dempsey. Jake will take him in an effort to give me a break. I love that he does that.

Tuesday brings ANOTHER lumbar puncture (with sedation), another infusion, the beginning of 966 consecutive nights of pill-taking, and a 5-day series of steroid pills.

I am praying that the research team has decided to honor my demand of ordering that secondary genetic test (NUDT15) so there is a vial ready at his appoinment tomorrow morning. It would be in their best interest!

Pray over Dempsey. Pray against negative side effects/ happenings. Pray protection over his body. Pray protection over his emotions. Pray protection over his mind. Pray wisdom over the nurses and doctors. Pray God's guiding for me about this genetic testing journey. Pray that God will not choose to make an example out of Dempsey. I am not interested in my son being the guinea pig or reason that doctors wake up and change their ways. Pray for my sanity. Pray protection over our parent hearts. Our hearts are being wrung out and we're simply tuckered out.

Tonight, while at church, I was reacquainted with the scripture passage Genesis 50:20. It goes like this:

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

This is what Joseph says to his brothers after the sold him into slavery because they were jealous of the favor he found with their father. Once sold into slavery, many trials ensued. However, God's plan had Joseph landing a career with the ruling leader of Egypt which eventually put him in a place of pardoning his brothers and providing for them. Read Genesis 50... it's an incredible passage.

Anyway, tonight I decided to claim this passage over Dempsey's journey. On IG/ Facebook I posted the following:

I claim this for Dempsey's current season! God, I believe, through Dempsey's journey, many lives will be saved (protected). Joseph endured many trials... May the trials I face prepare me to save the lives you bring to my life's door. Amen

Pray with me that God honors this claim and, in fact, uses this journey to save many lives.

A favorite saying I am read on this journey is this:

If we saw what God sees, we would ask for exactly what God gives.

Is that not the most poignant thought?! I mean, no duh... if I knew what God knows I would want whatever He was going to give me.

Alas, this journey of trusting what we cannot see or know, blindly, is exhausting. It's scary. We know God has shown his faithfulness all along this journey. He has used YOU to support our family in various ways the entire time. Yet I find myself struggling with doubt and control issues. I KNOW I'm not in control... but I still want to be, desperately. Why is it so hard for me to remember this- that if I can look back and see God's faithfulness, that means God was already out in front of us on this journey- because what was once the future became the present and eventually the past and God was in all of it. Perhaps it's because I'm weary. Perhaps it's because I'm human. Perhaps it's the very real effects of PTSD. Oh, Lord, please help. Amen