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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.

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Wednesday, June 29, 2016

Erwinia Injection #1

This was the report from Jake after Dempsey received his first Erwinia injection.


I'll take it! I still don't think this mama can stomach an injection appointment. I am so grateful that I have a husband who is willing to step up when I just can't step at all!

Thank you, Lord, for answering the prayers that went up on Dempsey's behalf for this appointment. Please keep the pain away and protect Dempsey's body against yucky side effects. Amen


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A Little About This Week

So, the last post was all about me being "super raw" emotionally, and I was. Still am in a way. The difference between then and now is I've experienced the new drug with Dempsey.

Monday was a hellishly long day. Dempsey and Jake left the house around 7:20am and I didn't bring Dempsey (and Sawyer) home until 5:30pm. Too long! The majority of that time Dempsey was hooked up to his "tubies" and his "power tower" getting his drugs infused into his little body. No reactions- praise God! The most noticeable effect, perhaps, was sleepiness toward the end of his LONG day. That may or may not have been a response to the new drug. It could have been a blood sugar issue just with being away from "normal" routine for the day. He fell asleep on the drive home and slept for awhile... which meant he didn't go to bed until almost midnight. Thankfully, Jake had taken a nap and was able to stay up with him.

Tuesday Jake took Dempsey to his infusion appointment. It was a much shorter appointment and went smoothly. Why didn't I take Dempsey? Well, I was handling Sawyer's doctor's appointment. Why did Sawyer have a doctor appointment? He has an outer ear infection, early stages, that I AM NOT IN THE MOOD TO MONITOR. I needed to know the extent of this issue. We got drops for his ear and will continue to use our essential oils externally around his ear. Also, he has a rash. It was noticeable as of Monday. Looked like chicken pox but wasn't itchy and wasn't spreading... so, I knew it wasn't chicken pox. Doctor said it looked like "dermatitis". Can you be more vague? The fact that she wasn't concerned about it was nice but I wish there was a little more conclusive diagnosis. So, we'll keep oiling up with a combo of: lemon, oregano, Protective Blend (OnGuard), melaleuca, and coconut oil... to cover ALL the bases- bacterial, fungal, viral, etc.

I am so grateful that Jake is the kind of father/ husband/ man who makes his family his priority. His wife, that's me, has limits. Dammit. I am learning to recognize those limits and pass the baton in an effort to avoid emotional upheaval or catastrophe. If I push myself beyond my limits bad things happen and I will not be able to be the wife/ mother I need to be. So, I lean into the all-too-foreign-to-me wiring of my male counterpart. Although I do not understand how someone can compartmentalize as he does or literally be thinking "nothing"... I am super grateful for those traits when it comes to walking through a tragic valley. Jake is able to deal (?), handle (?), accept (?) the reality, even an ugly one, and walk steadily through it. Me? I might be okay in the short term but man, oh man, would I be sloppin' emotions all over the place like an irrational tsunami. Not ideal for such a time as this.

Today brings more need and opportunity for Jake to step up BIG TIME and handle Dempsey's appointment. More infusion and an injection. I get the shakes just typing that. We were faced with a tough decision regarding this new chemotherapy drug- Erwinia. I can be infused for all doses and that means an every-other-day infusion over 2 hours with a 1 hour observation and 2 hours post hydration... not to mention the other drugs he would also need to have infused. That makes for REALLY LONG days away from home. Plus, when you infuse Erwinia you have an increased risk for ammonia toxicity (and it is not standard practice to check the patient's ammonia levels!). Doctors say that when it's injected the ammonia release is little to none, although with the injection comes pain. In my deep desire to keep Dempsey from more trauma, I railed against injections. I consulted with a friend whose daughter had each dose infused. This same child nearly hit a coma because her ammonia levels were that high and NO ONE was checking! Weighing the pros and cons... I finally just told Jake "I'm letting you make this choice." I just couldn't settle on one method and time is a key factor. So, with the injections comes a limit reached for me. Jake knows this and accepts this. He is managing his job responsibilities and his family responsibilities marvelously and with grace. I know this is taking a toll on him, but he has yet to complain. So, I ask you to pray for him.

Thursday are more infusions but, I think, also brings a de-access of his port. (needle out of his chest)
Friday is another injection.
Saturday and Sunday WE'RE FREE of drugs and will REST!!

Next week looks exactly like this week... with the exception of maybe 3 injections instead of 2 and 1 infusion of the Erwinia.
Monday: accessing port, infusions, injection
Tuesday: infusions
Wednesday: infusions, injection
Thursday: infusions, de-access of port
Friday: injection
Saturday/ Sunday: FREEDOM
Then we have at least one week, maybe two, off of treatment so we can focus solely on self-care for Dempsey and continuing to strengthen his body through nutrition, detox, oils, and activity.

Prayer requests:
Pray for miraculous healing
Pray for zero side effects
Pray for effective treatment with NO damage to Dempsey's body
Pray protection over EVERY SINGLE PART OF DEMPSEY'S BODY (his organs are in danger from this treatment)
Pray against pain
Pray against complications/ allergic reactions, etc
Pray for wisdom
Pray for calm nerves
Pray for selective amnesia regarding pain
Pray for Jake's Daddy-heart
Pray for my sanity
Pray for Sawyer's Brother-heart
Pray that we will feel peace with our choices (I hope hindsight will reveal we made all the right choices for Dempsey's treatment)
Pray for restorative rest (sleep is illusive for me)
Pray for normalcy as much as possible
Pray for joy despite despair
Pray against worry and fear
Pray for our support network, it is vital to our surviving this journey and navigating it with grace
Pray for things we can't see or think of
Pray as you feel led

Praises:
Side effects have been minimal to non-existent
Dempsey seems to be thriving during treatment (best we can hope for given the current medical model and legal limitations)
Dempsey sleeps well
Dempsey laughs
Dempsey is strong
Dempsey is increasing in strength with his trike
Dempsey enjoys being outside and active
Dempsey can run again, almost as well as pre-leukemia
Dempsey's story is touching MANY lives and planting seeds
We have tools to help Dempsey thrive
Dempsey and Sawyer are strong together and still bonding like normal brothers
Dempsey handles treatment like a CHAMP
Dempsey prays for his appointments at dinner (even the hard ones)
Dempsey brings smiles and joy to his medical staff
Dempsey is not defeated
Dempsey bounces back FAST and with enthusiasm
God is faithful and with us, even if we can't see Him or feel Him

Tuesday, June 28, 2016

Post In Process

Please stand by... there is a post in process.

Until it is finished, please enjoy this photo.

Sunday, June 26, 2016

Super Raw

Today has been the hardest day I've had in quite awhile. Knowing what is coming tomorrow morning, a new chemo drug and a two weeks of every day travels to CHOC OPI, my nerves have been shot. I've been angry, lonely, pissed, tired, weak, scared, worried, fear-filled, and more. My mind has been such a battleground today and I'm afraid that I didn't stand my ground as well as I should have. I'm just broken, folks. Good and broken.

This morning started out really good. I was managing to keep my cool about the coming week. Sawyer and I went to church. I was totally tracking with the message John delivered. Then came a video about a particular team of missionaries. Long story short, when their son was 9 he was diagnosed with leukemia. He ended up dying. I lost my $#!&. I broke down, into tears, in service. Thankfully my new friend Karen was there to hold me up. I just squeezed her so tight, gasping for air, and saying "I don't want that to be us!" She just squeezed me back and kept saying "I know." It really was a beautiful moment of messiness.

I shared my emotional wreckage with a few people who promised to pray (as they have been) and shared words of encouragement. I am so grateful to them. More than most, though, I am grateful to Jessica. She walked this journey with her teenaged daughter and came out victorious. I cannot explain to those who haven't walked a journey like this, just how grounding it is to reach out to someone, bare your soul, and have them say "I totally get it" and mean it. Jessica is one of those people for me. Our text exchange was just what I needed to find my footing and get through the rest of the day. I am grateful. I'm still weak but there is more strength than there was and it's because she is willing to give me a few minutes of her time, reach back to her emotions throughout her family's journey, and sit with me in the mess.

I'm still scared. I'm still worried. I'm still angry. I'm still so many things I don't want to be but I am able to not fixate so much. THAT is how I know people ARE praying for me. If they weren't, I'd be back on antidepressants.

Dempsey is, at the moment, doing GREAT! Praise be to God. Happy. Strong. Energetic. Playful. Bubbly. Bouncy. Comical. Chatty. All the things a 4 year old should be.

Prayer requests:
Please pray for Dempsey. New drugs mean new unknowns.
Pray over his body.
Pray that the drugs do what the need to do, cause no lasting damage, and his body is able to detox them out with no problems.
Pray that we will do everything we know how to do to help his body detox and heal itself.
Pray that I can look back on today and see that there was no need to worry because Dempsey is doing just fine.
Pray ahead of us.
Pray for all of us. This journey is HARD.
Pray for our support network because we need it! We need it BIG!!
Pray for solid rest.
Pray for effective distractions.
Pray against side effects.
Pray against pain.
Pray against nausea/ vomiting.
Pray that his little body handles this new regimen like a champ.
Pray for health.
Pray for healing.
Pray for miracles.
Pray as you feel led.


Friday, June 24, 2016

There Is Scary Stuff Coming Next Week

Please read the following and then hit your knees and pray HARD for our Dempsey!

Next week's schedule:
Monday (a LONG infusion day):
  • Erwinia (new chemo drug) infusion over 2 hours with 1 hour observation
    This is the new drug because he had such a horrific allergic reaction to the PEG 2 weeks ago. PEG is made from e-coli and this Erwinia is made from chrysanthemum. This drug is KNOWN to raise ammonia levels and they DO NOT check patient's levels- AT ALL. Well, you know me... someone's gonna be checking my baby's ammonia levels EVERY BLOOMIN' WEEK! The ammonia release in their body is a reason for the nausea and vomiting and can cause a coma if not checked/ regulated. HELLO! I don't give a rats patootie if "it's extremely rare"... check the levels! Thankfully our primary oncologist is willing to work with me on this.
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)
Tuesday:
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Wednesday:
  • Erwinia (new chemo drug) infusion over 2 hours with 1 hour observation
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Thursday:
  • Cytoxan (he's had before)
  • ARAC (he's had before)
  • Mercaptopurine (pills he's done before)


Friday:
  • Erwinia (possible injection dose)
    The injection is said to have less side effects despite having a longer half life (72 hrs). I am so mixed about this drug. The primary oncologist says she doesn't have another option beyond this drug and that it's a crucial part of treatment. *pulling my hair out*
This schedule repeats the following week as well.


We will be spending so many hours at CHOC OPI center. I am about to lose IT over these drugs. The more I study about the history of the medical profession as we know it, the more enraged I become. This journey is ugly! This next phase is brutal. I cannot understand how people blindly go along with this kind of treatment. Dempsey doesn't have a chemotherapy deficiency!! Some part of his body's communication broke down. We need to figure out what step didn't work right and fix that!

Lord, I beg you to miraculously heal my baby! I'm talking the kind of healing that levels the "knowledge" and "science-based proof" of the medical profession. I want my baby to be rid of this cancer so we can get back to living the precious life you gave us. I am weak, Lord. I can't handle this. I need YOU. I need you to show me the way out from this. I'm so lost, Lord. I'm so conflicted. My heart is torn. Why haven't you healed my baby? Why does his little body have to endure such torture at the hands of those who don't understand there is a better way? Why won't you let me compartmentalize my thoughts and emotions? I don't want to feel anymore. It's hard. It's horrible. It's exhausting. I try not to worry but I know things. I wish I didn't know things. I just want this to end. Now! Not in another 37 months. Now! I am a mother begging on behalf of her child. You didn't make Abraham wait 3 years and 3 months for Isaac's deliverance from the alter... Please, Lord... touch my son with your miracle filled fingers. Amen


Prayer requests:
Pray for MIRACULOUS HEALING (Lord, I'm waiting!!!)
Pray protection over every non-leukemia cell in Dempsey's body
Pray that the drugs go into his body, kill the sick cells, and quickly vacate his little body leaving NO sign of their presence, other than no leukemia cells
Pray against negative side effects
Pray against complications
Pray against allergic reactions
Pray for calm nerves
Pray for my sanity
Pray that I can embrace and enjoy the next 60 hours of "normal" with my family
Pray protection over Sawyer- these coming weeks are going to stress our family
Pray that this coming week is smooth and uninteresting
Pray for wisdom for ALL medical staff
Pray accuracy for the pharmacists who mix my boy's drugs
Pray for steady hands
Pray blessings and peace over the lives of the medical staff
Pray for wisdom and Divine guidance for us through this shitty valley called cancer
Pray that each of us can live in the moment and never be captive to the life-sucking emotions of fear and worry
Pray as you feel led


Ways you can help...

Life in Stills

Thursday, June 23, 2016

Update in June

Hello!

Yesterday was a GREAT day! Nathan brought his dog Sydney over. She is such a sweet girl! He made sure she was up to date on her shots and had her groomed at All About Puppies so that she could come hang out with Dempsey. While they were here we took Sydney for a walk while Dempsey rode his trike. Sawyer got to see what it's like what a well-behaved dog... not too tough. After the walk "Uncle" Nathan played a few rounds of Mario Kart with the boys on the Wii. So much trash talking! It was glorious.
A little bit later I dropped the boys off at Granny & Granddad's house while I went and bought us a new pool! I found the 10 foot round pool at Big Lots after looking at WalMart and Target. I would have done Amazon but I didn't want to wait even the two days... IT'S TOO HOT. My parents brought the boys home when the pool was 2/3 full. Of course, the boys wanted to go in it right then... so, they had an exercise in patience. They DID get to go in it though. They "swam" for about 30 minutes in the 6 o'clock hour. Now comes the battle of finding a chlorine alternative because... well, chemicals suck.

Dempsey is doing fabulous. He's had an easy week- that means no chemo. He will have labs tomorrow morning. Please start praying for next week. Dempsey will have 4 days of infusions with Monday being a LONG day. We will be protecting his little body with prayer and nutrition. Meanwhile, he is happy, chatty, energetic, fun, competitive, feisty, strong, triking, running, laughing, swimming, yelling (at brother), helping, learning, growing, strong, loving, smart, insightful, aware, curious... he is a normal 4 year old. This week I have noticed that I start to forget he is REALLY sick. That is a blessing and a curse. It's a blessing to feel normal but it is a curse because we are not normal. Dempsey is SICK! Dempsey needs to be cared for because he is SICK. We just soak up the good times/ days and try to pack up those memories and hold onto them when we have tough times/ days.

Sawyer had baseball camp last week and loved it. It was such a blessing from some friends. Along with learning the ins and outs of baseball, he also learned a little bit about himself and problem solving with a troublesome peer. Thankfully everything was resolved and ended on good terms. He had a playdate on Tuesday and loved it. He's been wanting to have this playdate for awhile and it's so hard to wait for. We are so thankful for friends who will take him and love on him for a few hours. Sawyer starts Chess Camp today. Another blessing from some friends. It's one hour each Thursday for 8 weeks and I can't wait to see what he thinks about it. This morning Sawyer helped our friend Ellen transplant some chard plants (started from seed). He got to get his hands dirty and... he liked it. I told him "You may be a farmer yet, Sawyer."

Jake is back to working full time. This is good and bad, for me. I know it does him a world of good to be back at work. It gives him distraction and purpose and that helps him be better for us at home.  When he is at home with us he is such a wonderful participant in life with us. Life is better when Daddy is home. He is a fabulous life partner and father. I appreciate how he is able to do so many home improvement things and how he takes the time to research options and such. I don't have the patience for that kind of stuff and he actually enjoys it. He is great at DOING things with the boys. Going on bike rides, cooking, legos, board games, games in general, light sabers, etc. He takes care of me well, too. The boys and I are truly blessed to have him.

Me. Well, I'm learning how to be a stay-at-home-mom (SAHM). It's hard. It's even harder because I'm an extrovert and I can't be very extroverted... I mean, I can't take Dempsey out to tall the places I'd like to go. I can't do all the things I would like to do. I am not built for board games, art projects, or science experiments. I don't enjoy those things and thus it is hard to get excited about doing them. Dempsey's leukemia journey is full of growth for me. I am working to accept this season and learn to adapt/ grow into the role I am currently required to fill. I am learning to LOVE my home and treat it as a viable member of this family. Beyond the house, Jake works to encourage me to meet up with friends when he's home with the boys. He knows this fills my tank. I try to make it to WACC each Sunday with Sawyer while my boys watch Dempsey so I can connect with the largest part of our support network. Plus, it's just good to be in the Lord's house. I miss attending Eastside but there just isn't a way to do that right now.

Please don't forget to check out the PLEDGE. It's a big need we have for Dempsey as we work HARD to keep him strong through cancer treatment with nutrition. There is a link to the Pledge's form in my signature. Please share the Pledge with family, friends, social media, etc. You just never know who God is going to use and how.

Well, that's a good update from up for now... HOW ARE YOU? Please let us know how you're doing and how we can support you.

Cheers.

Prayer requests:
Pray for miraculous healing of Dempsey
Pray protection over his body- specifically chemo effected organs
Pray protection over his mind and spirit
Pray against nausea
Pray against negative side effects
Pray for wisdom for doctors
Pray for wisdom for us
Pray protection over Sawyer... this journey is harder on him than he lets on
Pray over our marriage
Pray for restful/ restorative sleep
Pray for wisdom in all the alternative health practices we employ
Pray for strength and diligence for us
Pray for our support structure... we can't do this without it (YOU)
Pray for the insurance side of things
Pray that the road ahead is smooth


Coral Kenagy

Friday, June 17, 2016

Thank You, Lord, for Validation

So, if you've been following along you know this mama has had quite the emotional roller coaster recently. Thankfully, this week ended on a much higher note than it began. Let me share the recent "highs".

On Wednesday I returned a call from Dr Shane, a cancer coach from beatcancer.org. It was a short conversation that ended with an appointment for me to call her on Thursday. So I did. We talked for about 40 minutes. She was taking a bit of a history on Dempsey. I love that she is appalled at what is happening to Dempsey. She is also well aware that if we don't follow what the medical "professionals" tell us "needs" to happen, we can lose Dempsey to Child Protective Services (or whatever that agency is called in California). Amid our conversation I explained our eating habits, the alternative health practices we already employ, Dempsey's diagnosis, etc. Her last question to me was "What kind of water do you have in your house?" When I answered "We have reverse osmosis (RO)" I swear I heard her fall off her chair. When she caught her wits she said "You're like the perfect client." That was reassuring. The realization that all that we are doing is impressing a cancer coach... that feels pretty good.

Then, last night, came a long-awaited phone call. Kari and I were finally able to connect audibly, instead of just digitally. What a life-giving 90 minutes for me!! I don't know what God's got in store for me through or after this journey but I do know I want to do something with the KICKcancER Movement that Kari is a leader of, alongside Season. Kari was privy to some details of Dempsey's journey because of email and private message communication we've had. The main reason for this call was to discuss the purchase of a BioMat for Dempsey and some how-to coaching about castor oil packs. Beyond these points we discussed a myriad of cancer life details. She, too, asked about our current use of nutrition, essential oils, etc. When I explained what our life looks like she asked "How far into this journey are you?" I told her "We are in month three." She was surprised. She told me so. She said "With what you are already doing I would have assumed you were much farther along in this cancer journey." She said that most parents she talks to are not as educated as I am and most aren't as nutritionally aware either. This made me feel a ton better about this journey and how we're doing. If I'm already doing things right, then I KNOW Dempsey is getting the best help he can to come out of this treatment strong and healthy with no worry of a secondary cancer. I know there's no guarantee of no cancer again... but we can certainly aim for that! It was just super reassuring that I'm doing the right things.

God lined up my life prior to cancer just perfectly, as he does. I would not have the confidence I have if I didn't have the knowledge about nutrition and oils and "alternative" therapies. He gave me the resources I needed to get Dempsey through this nightmarish journey with as little damage to his long-term health as possible. Now, I just need to put my big girl pants on and continue to fight every battle in this cancer war for and with Dempsey. So, God, you listening? I need to FEEL you with me EVERY SINGLE MOMENT. You've gotta let me know when I'm gettin' off course. Okay? Okay.

I particularly love it when other parents refer to this cancer journey with modern medicine as a "shit storm". That's exactly what this is!!! There is no way to pretty this up. I personally don't think it needs to be prettied up. Call it what it is- a total shit storm. How do you marry two opposite schools of thought with grace? On one hand I am determined to help Dempsey's body heal itself with natural methods (nutrition, essential oils, infrared heat, exercise, detox, etc) and on the other I have to walk with those "trained" in medicine and pharmacology. This aspect of the journey is hard to swallow and even harder to apply. But, we're trying.

Praises:
Dempsey has a week off!! No appointments until next Friday and that is just labs.
Dempsey is doing well!! His color is good, his energy is good, his appetite is good, his elimination is good, his sleep is good... He's good!
Today was a good day.
This mama is feeling emotionally stronger right now.
Jake is an amazing dad! He handled today's appointment to give me a little more space between last weeks nightmare scenario.
Sawyer had a wonderful experience at baseball camp thanks to some generous friends.
We get to be "normal" for awhile.

Pray requests:
Pray for miraculous healing
Pray for small and large miracles along the way
Pray for zero side effects
Pray for zero pain
Pray for courage
Pray protection over every organ in Dempsey's body
Pray protection over Dempsey in general
Pray protection over Sawyer's brother heart
Pray protection over our marriage
Pray a hedge of protection over our home
Pray we can be salt and light to all we meet on this journey
Pray that our path is clearly marked from the Lord
Pray that Dempsey's counts/ numbers rise
Pray that we will stay the course to fight the battles in this war
Pray as you feel led

More Pics... Just Because