Biggest Need

MONEY

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

Wednesday, December 21, 2016

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.

Tuesday, December 13, 2016

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

My Website | Amazon Lists | PayPal (friends & family)

Sunday, December 11, 2016

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
 

Wednesday, December 7, 2016

Will Someone Please Return My Mind

You know how people tell you "Don't go on the internet" or "Don't Google it... you'll make yourself crazy"? Well, I'm down the rabbit hole.

Why am I down the rabbit hole? Excellent question! I'm down here, in the dark, using God-given senses to figure out how the hell I can best protect my baby from the people who are employed (mandated, even) to protect and cure my baby!

Why does he need protecting from them? Another excellent question! He needs protecting because they don't know enough about him or these drugs! They don't know how his homozygous MTHFR A1298C mutation puts him at risk for clotting issues with the drugs Methotrexate and 6MP he'll be getting EVERY SINGLE DAY until August 5th 2019. Now I'm learning that this same mutation puts him at an increased risk for toxicities of the various drugs he'll be receiving. Great. *sarcasm*

So, I am on the internet researching, reading, learning, compiling data so that I can deliver an educated, fact-filled case when his primary asks me to give a reason for the tests I'm requesting.

I emailed our case coordinator stating I want two tests ordered. #1 is TPMT and #2 is NUDT15. These are bother genetic tests. Turns our Dempsey has already had the TPMT test and results were negative. That would be comforting EXCEPT that I know a few families who children tested negative only for that to be false! Hello! So, with the assumption that there is a flaw in this test, I am requesting the NUDT15. The coordinator stated "we don't really order the NUDT15". That's nice, we're going to order it for my kid. *Mama Bear is unleashed*

See, if Dempsey is actually "positive" for TPMT, he will need a REDUCED dose of chemo!! Wouldn't that be fabulous? My boy getting to finish out his treatment with a reduced dose of chemo. I am betting that this will be the reality. Back to why he would need a reduced dose if he's positive TPMT... because his body can't metabolize the drug efficiently, thus it stays in his body and builds up. You know what happens then? TOXICITY! My son would become dangerously toxic, sent to the ER, admitted to the hospital, given steroids and antibiotics. Um, NOT ON MY WATCH, folks!!

I am so grateful God is giving me this information NOW. I know that the test will take 4-5 wks to get the results and while I don't like that, God just gave me this information now and he is in this process with us. So, HE knows what I need for this journey and he has just served me up another helping of knowledge. He is so good.

BIG QUESTION: Why the hell am I, the not-a-medical-student/ doctor, having to work this hard to protect my baby from the very people that should know all about this stuff already?!?!?!

I have already requested a list of doctors who make up Dempsey's "team". Dollars to donuts there's not a geneticist on his team. I'm willing to bet his team is entirely oncologists... as if my son is ONLY cancer. Not like he has genes that could effect his treatment, right? *snark* Not like a nutritionist would be important. *snark* Not like an endocrinologist would be important. *snark* Not like an osteopath would be helpful. *snark* Neurology? Ophthalmology? Audiology? Dentist? Gostroenterology? Etc, etc, etc.
Now, to be fair-er, these doctors are contracted and available at CHOC... but why aren't the part of the "team" from the beginning? Why aren't ALL SPECIALTIES included in diagnosing, caring, managing, and watching each patient? Why aren't all specialties constantly communicating about the WHOLE CHILD, my child? Why do I have to get referrals to the other specialties? Why do I have to ask for these genetic tests to PROTECT my child and help treatment be effective?

Another thing I requested from our coordinator- a list of ALL the medications Dempsey has received in the last 8 months. Don't care about the doses, just the names. I need to start researching what long-term side effects we could be up against. I'll be damned if any part of Dempsey will be compromised because of this journey! No! I say NO!

Okay, I'm wiped. This is an angry post and I'm kinda sorry about that. However, this is a real look at a real cancer journey, from the eyes of a real mom with a really deep devotion to her child.

Today's "Fun"

My poor Sawyer. His heart gets trampled on daily by brother's chemotions. Every single day there is an incident, a misunderstanding, miscommunication, an unfortunate action or word. These incidences send Dempsey over the metaphorical edge and spiraling into a tornado of anger complete with winds of frustration. Dempsey loses words to convey his feelings and thoughts. It is sad. It is hard. It is torture for Sawyer, who just wants to make everything okay, peaceful, secure, and fair. When his heartfelt apologies fall on deaf ears or hard soil he feels dejected, unloved, shame-filled, and riddled with guilt.

THIS is what I have to help him navigate daily. It takes a long time for these lessons and growth moments to create trenches of habit and familiarity. I am just so blessed that these trying times are mine to share with my sweet Sawyer. No one else could secure his footing on this uneven path quite like his mama. Pray for my boy.


Later this day...

You know what's fun?
Giving your kids those air pockets from a package to pop only to have one pop more than the other, have feelings get hurt, anger waves, unforgiving hearts, a conversation about "you control your emotions" with a chemotional 5 year old, your 9yr old desperately trying to make things right with the 5yo only to be denied the acceptance of his genuine apology.

Fast forward 5 minutes, one child crying on their bed after refusing to even utter "I forgive you", one child crying on the couch because he has no way to make this "right", and me... typing this all out for you, the reader, so that you might catch a glimpse of what happens damn near everyday in my home.
Forgive me if my Christmas cheer can't be found with the light of 1,000 suns this year. It takes all I've got to make it through each day.

Wednesday, November 30, 2016

Sweet Exchange

Setting the stage...

ME [in the kitchen, cleaning and prepping the boys' diffuser for the night]
Dempsey [playing Clone Wars Lego on the wii in the living room]

Me: Dempsey?
Dempsey: Yeah?
Me: Is there the lavender oil on the table?
Dempsey: Yes.
Me: Can you bring it to me please?
Dempsey: Oh sure.

Dempsey [enters kitchen]

Dempsey: What are you doing, Mom?
Me: Getting the diffuser ready for Sawyer so he only has to plug it in when he gets home.
Dempsey: Aw, that's so sweet.
Me: Well, thank you.
Dempsey: You're welcome.

Dempsey [scampers off to the living room again]
Me [heart melting, thanking God for my sweet boy]


Moments like this are one way, I believe, God fills in some of my emotional, psychological, mental, spiritual, physical cracks. He gives me just enough beauty to distract me from the darkness that lingers, waiting to descend once more on my weak soul.

A Little Break

Starting today, Dempsey has NO MEDICINE for 7 days! Praise God.

He will have another infusion on Tuesday, December 6th.

Then, I believe, we start the phase called Maintenance the following week. Maintenance is the longest phase. The "easiest" phase. This is the phase where we are supposed to reclaim some "normal". I don't know how fast or hard I will run into that notion. I still want to protect Dempsey as much as possible BUT it would be nice to be able to not be terrified every time we take him into public. I still won't feel comfortable at public parks or in high-use bathrooms. However, maybe Target won't be so scary and maybe a movie theater could potentially, possibly be an option. We look forward to being able to mingle with our large families and see friends again without them having to take showers, or change before our encounter. Even the notion of a vacation seems possible, assuming we stay local and don't go in public swimming pools.

Honestly, I have no clue how this phase will change our current living rhythms.

I know that we will be on a LONG roller coaster of emotions in Maintenance as we work in tandem to poison our son every night for over 1,000 nights. Please don't try to make me see this as "helping" Dempsey. I do not believe I am helping Dempsey. Don't encourage me to lean into the "wisdom" of the doctors or the "proven standard of care". Doctors are always PRACTICING medicine... they are not medical perfectors and they certainly do not possess a well-rounded education or view of health. I do not pretend that doctors are somehow above the rest of us... they aren't. They happened to study something different than I did and when they tell me, in not so blunt terms, that my education in health (nutrition) isn't valid or they dismiss my questions... I lose respect for them and their profession. It also causes me to question their motives and their ego.

Are there good doctors out there? Absolutely! Are there doctors out there who take a holistic approach to health? Absolutely! Are any of those kind of doctors on my son's team? Absolutely not! His team consists of people who only look at him as cancer. My son is SO MUCH MORE THAN CANCER!!!!

So, for now, we rest in the space of no medicine. We soak it up. We celebrate it. We detox the last dose of chemo out of him, strengthen him for the next round, and work to keep him strong- just like every other day in this fight. We give him words for his emotions and then the space to feel and express those emotions. We all take deeper-than-normal breaths when the chemotions come into play... and they do, every.... single.... day. We work with Sawyer to process through what happens between him and Dempsey and how he feels about it. Jake and I die to ourselves, in honor of each other, when we force ourselves to talk about things that are bothering us about the other. If you thought communication was hard in a normal circumstance, let me assure that it is exponentially harder in a child-with-cancer scenario.

We are thankful for you, grateful to you, and prayerful over you.

How can you pray?

  • Pray against negative side effects for Dempsey
  • Pray protection over his little body- lumbar punctures, port accesses, chemo infusions, anesthesia, sedation, bone marrow biopsies, organ health, cell health, immune strength
  • Pray the rest of us remain in excellent health so we don't put Dempsey in jeopardy and can continue to care for him to the best of our ability
  • Pray for our support network- this is LONG and hard journey and we will need them beyond the treatment years
  • Pray for our finances- we need to do some remodeling and structural fixes and have NO CLUE how we are going to pay for it
  • Pray for our personal grace stores- daily they are filled by the Lord only to be emptied by this journey's trials
  • Pray for each of our hearts- brother takes it hard being Dempsey's 24/7 companion; Mom takes it hard being Dempsey's main everything; Dad takes it hard knowing that mom is Dempsey's main everything while he provides for all of us through his job away from home; Dempsey's heart takes it hard because his body is being taxed like you would not believe and that means sometimes his brain and mouth don't connect and that is frustrating.
  • Pray for people to be creative in their fundraising- example: a friend auctioned a product she sells and had an awesome and anonymous donor MATCH the bid up to a certain price. God is so good!
  • Pray endurance over us
  • Pray protection from dark forces over our home- they find the tiniest crevice and weasel their way in and sometimes our hearts are busy or distracted and they stake a hold
  • Pray for our marriage
  • Pray wisdom for the doctors/ medical staff- open eyes and minds to holistic care
  • Pray for a right perspective- our son is alive and thriving, his journey will end, we are impacting the Kingdom, we are prioritizing our priorities, we are grateful and appreciative of a simple life, we are grateful for what we have (people and things), we are learning what it's like to live on our knees in front of the Cross, we are being sanctified (which is painful and beautiful), we are growing in our relationship with each other, we are learning how important our family unit is beyond all the trapping of this world, we are making memories that will last a lifetime, we are building a legacy that we are proud of...
  • Pray that we will never be blind to the divine appointment God places in our path
  • Pray that I continue to be available to others who need help on their own health journey- I am passionate about helping people THRIVE in this life... cancer or no cancer.
  • Pray as you feel led (always make room for the Holy Spirit to do its work)
My Website | Amazon ListsPayPal (friends & family)

Thursday, November 24, 2016

Thanksgiving 2016

So, this is the first Thanksgiving on this cancer journey with Dempsey. Not at all how we would have planned this Thanksgiving to be if you asked us on January 1st!  Here is a glimpse into the Kenagy's Thanksgiving 2016...


The drive TO CHOC for Dempsey's infusion.

Pre-admin. We had to go to the hospital side because it's a holiday and the OPI is closed.
Cancer doesn't take a holiday, folks.

Running... always running.
The boys racing down the 1st floor halls to pass the time and blow off steam.

The return trip down the halls... I believe Dempsey's feet are off the ground.

Post infusion visit. Wasn't in the mood to take pics of the infusion time.

We stopped by the Grands McKenzie on our way home for a wonderful distraction and time of family fun... in the form of tickling, rough-housing, Monkey in the Middle, wii, and some football.

THIS. This, folks, is what Thanksgiving is all about. Read story below.

Our boy lovin' on our Kamatz kitty. He says Kamatz feels so soft.


So, about that table setting. My dear friend, Ellen, asked me a few days ago if we had T-Day plans. When I told her no, she asked if we would be interested in joining their family this holiday- whatever that looked like. She offered us seats at their table, a driveway pick up, or a multi-member family drop off. We opted for the drop off and what a joy it was to see her husband, his sister, and their father. A precious break in our day. Y'all, this is what this day is all about- thinking of and including others in your time of family/ community. We were loved and cared for. We are thankful to God for bringing these wonderful people into our lives and we are grateful for their love for us.

As we bring our first cancer Thanksgiving to a close, we are thankful. Thankful that our Dempsey is ALIVE. Thankful that Dempsey is THRIVING through treatment. Thankful for your PRAYERS. Thankful for your SUPPORT. Thankful for your CARE. Thankful that each of you is in this journey WITH us. Thankful for the blessings our LORD has bestowed upon us... things from food in our bellies to a roof over our head to the trials that He has given us to bring himself glory and further the Kingdom cause. Thankful for NURSES who give of themselves. Thankful for doctors who are trying to HELP Dempsey. Thankful for new friends who are wise about ALTERNATIVE therapies to help our boy thrive. Thankful for functioning VEHICLES that get us to CHOC and back safely day after day. Thankful for an employer that understands the need for FLEXIBILITY of schedule during this journey. Thankful that there WILL BE AN END to Dempsey's treatment. Thankful for the ways in which we SEE life differently- blessings are amplified and compassion has grown. Thankful for God's PROVISION in all areas of our life. Thankful for time TOGETHER as a family. Thankful for a SIMPLE life. Thankful to live in the most FREE country on earth. Thankful for first responders who keep our family SAFE. Thankful for so very, VERY much!

Psalm 100:4
Enter his gates with thanksgiving;
go into his courts with praise.
Give thanks to him and praise his name.

Monday, November 21, 2016

EPIC Emotional Roller Coaster

Y'all... for reals... grab your favorite warm beverage in your favorite mug and tissues, lots of tissues. I am about to unload into the post the EPIC emotional roller coaster that has been the last week+.

Let me walk you back to last weekend. The lows of those two days did not make it onto the blog. Why? Because there are just sometimes when I don't want Dempsey's blog, which was created to be a place dedicated to memory-catching, to be where I expose the deep, dark places inside me. That's what last weekend was. Deep. Dark. Broken. Painful. Sanctifying.

Here's the Reader's Digest version:
I'm a loud bleacher mom. Yes, I'm that mom. Sawyer literally cannot handle it. It confuses his "authority" focus. I get it. So, in an effort to honor my son, I skipped several games because that was easier (surprisingly) than keeping my trap shut during the game (#momfail). Saturday was the last game of the season and our whole family went. We knew Dempsey wasn't going to make it through the game so Jake would stay and Demps and I would walk to the playground and play. That is what we did.

On the playground Dempsey was having a "chemotion" problem. He was extra sensitive and something I did unintentionally scared him. He yelled at me and I barked back. Not my finest hour but, honestly, chemotions take a toll on EVERYONE in the family and apparently my last nerve was exposed. Tears came (Dempsey).

Tears came for me, and wouldn't stop, while sitting on the play ground bench. Why? Because my sweet friend sent me a sweet and thoughtful text with a video attachment. Want to venture a guess what the video showed? Brace yourself... it was a video of Sawyer scoring his ONLY goal of the season in the LAST game of the season and I was NOT in the stands to see it or cheer him on. I will not take you splunking to find where my mommy heart was in that moment. Suffice it to say it was gasping for air and flailing to find joy for my son's amazing accomplishment.

It was hard to exist that day.

Sunday was full of more emotions. The kind that come when you made a decision based on hours, days, weeks, months, and years of learning who your children are only to have someone question that decision. Granted, this person was under stress and their life was made more difficult by my decision and a facet of that decision not working like I thought. Ego was kicked in the gut. Guilt came like a waterfall. Self esteem caught the last train out and the dam was released through my tear ducts. It was an "ugly cry" time... for a long time... Ever wanted the earth to just swallow you up? Yeah, that was a day for that if ever there was one.

The weekend spilled into the week and the next weekend. Wave after wave of emotional hip checking. The Lord was emptying me beyond the "E" I recognized. So empty that Sawyer was in tears because he was worried about me and his dad. He just wanted us to be okay. THAT is how empty I was... I couldn't even disguise my struggle. I've never said "It has nothing to do with you" more in a single week. But it was true. This wasn't about Sawyer, it was about me and my baggage.

Fast forward to last night. I typed a much-needed email full of apology. Sincere and two dimentional. No chance of starting an awkward conversation only to see a facial expression I don't like and shut it all down. It needed to be said... and it was.

Enter vulnerability.

Today I looked at finances and the stash of NEOLIFE products we use for Dempsey's supplement regimen. Both were LOW. *sad face* So many feels. I was overwhelmed... and not in a good way. I have been struggling to even know what to cry out to God for! I rest in the fact that God knows what I need even when I don't. I am grateful for that truth.

Later, a sweet, sweet friend cautiously shared some big news with me. Again, so many feels. They informed me in such a way that shows me I am really known by them. A gentle message of care, concern, acknolwedgment, and news. I rejoice with them and at the same time a feel a dagger twist in my heart. See, I'm still grieving so many things that I feel this journey has stolen from me. Grieving... a continual process with no set pattern or explanation. This was a sweetbitter (not bittersweet because the good comes before the bad) exchange of information.

We went to Costco as a family. Saw a few familiar faces and dozens of unfamiliar ones. At the check out counter the checker started scanning our groceries as if they belonged to the lovely lady in front of us. She quickly caught the error and removed our items from the lady's groceries. Problem solved. Remember this for later.

After we unloaded and put away the Costco haul, Sawyer and I went to NOMIN Organics- our new favorite local organic store. While there I met Thelma. What is so special about Thelma? Well, I firmly believe God sent her to me as a sort of rescue. She was chatty/ social and an absolute joy to talk to. Oh, and she happens to be deaf. I noticed when she didn't understand something Sawyer said. I started signing and she lit up. God took me so far out of MY world and placed me in a world that has been imprinted on my heart, and here was this beautiful woman. I had forgotten how beautiful talking with hands is! It was incredible to show Sawyer a joining of worlds he hasn't witnessed since his Auntie Tabitha, Uncle Jason, and Jaylynne moved several years ago. Thelma kept commenting on how smart Sawyer is... how kind... how dissimilar he is to many of the kids she knows. I was loving the way she just shared and shared and let me into her life so willingly. She is a new Christian and was joyous to learn that we are Christian too. The whole encounter wreaked of the Holy Spirit... and I needed that.

When I got home I posted on social media that our family has a need for nutritionals for Dempsey. I shared the need and a few ways to fill the need. I admitted that I have a nasty habit of putting God in a box and limiting his power. It was hard to ask for help... because I have an ego and independent pride. Dempsey, though, is worth benching my pride! A couple people responded telling me my post was an answer to THEIR prayers today and confirmation that that nudge was, in fact, from the Holy Spirit. How incredible is that? Me benching my pride, being vulnerable, and sharing a need was God's way of communicating with other people. Only in God's economy!!! The Body of Christ is amazing and the Holy Spirit never sleeps.

So, remember that lovely lady in front of us at Costco. Turns out she recognized our family. How do I know this? She, and her husband, showed up at our house!!! She introduced herself and explained where she saw me earlier that day. Since I don't know her I was quite curious how she knew where I lived. Then I saw her husband. I vaguely recognized him but had a peace about this whole encounter. The woman went on to explain that the Holy Spirit nudged her to pay for our groceries at Costco but she missed the boat. I called Jake to join this conversation since he knows the husband. She relayed her story. She got home, told her husband, and was so unsettled that she missed the boat. He told her "Well, lets go over there right now!" So, they did. She apologized for dropping the ball... I just hugged her. What else could I do? She handed me an envelope with money to help cover our groceries. Jake hugged the husband. We were both so shocked and wonderfully undone.

You guys!! Are you reading this?!?! Are you seeing God's fingerprints? Are you seeing how God is in it ALL? If you're not, start at the beginning and read again. This isn't even all of the details. Some information is just not for a blog. Rest assured, there are more details that would make this post EVEN MORE EPIC. Is all the pain, heartache, and struggle gone? CERTAINLY NOT! But God has afforded me enough care and concern from members of the Body that I can lick my wounds and carry on... determined to drag my sorry, sanctifying behind across the next goal line.

God bless you for your prayers and support (of various kinds)!!!

Here are the ways I shared for people to help/ bless us:
PayPal.me/CoralKenagy & http://shopneolife.com/CoralKenagy

Saturday, November 19, 2016

Detox Bath Realness

I went in to do Dempsey's soapies while he was in his detox bath. He mentioned that soon I wouldn't be able to do soapies because he wouldn't have any hair to soap. How right he is.

There was such levity in his realness, though. It was beautiful. He was acknowledging something from his heart in his own Dempsey way. Precious.

He even joked like this...
You'll come in and say... "I'm here to do your.... Wait! There's no hair to soapie."
He said this with lightness of heart and even some dramatic poses/ postures for added emphasis. Imagine him sitting in the bath water, bringing his hand to his face in a thinking pose, furrow his eyebrows, and utter those words. Such a big personality in such a little body!

He is feeling things no five year old should feel. He's processing things no five year old should have to process. He does all this with such a matter-of-fact attitude. We work to give Dempsey the words and space to process and share what he's feeling and processing.

We try to let him control the things in his life that he can control... like the cutting/ shaving of his remaining hair. He says "no" so we say "okay". When it comes to brother things, we try to make things fair... even when this means he will be unhappy. He needs to learn how to deal, cope, process, compromise, and so many other big-person things. One day this cancer will be gone. It will be behind us. When that day comes we need for Dempsey to be a quality human being... not a spoiled brat who developed bad habits that will plague him throughout his life. We are committed to raising two gentleman... not one gentleman and one human who uses a health hurdle as a crutch as they limp through life.

Friends, there is so much laughter in our home!! It is glorious. Those deep inside giggles that start in your toes and gush out your mouth and even make your nose snort as you gasp for air. Sawyer can make Dempsey do that like no one else. Their bond is beautiful and I am grateful to God for growing it... even when I think there is something wrong with the soil (cancer).''

I wish you could have seen him and heard his little voice have that above-mentioned conversation with me. I have to log things like this because there are so many beautiful moments amid this craptastic journey.

Thank you for your prayers. Your support. Your encouragement. Your blessings in their many forms. We need you. We appreciate you. We loves you.

Friday, November 18, 2016

A Mini-Sized Worry

Dempsey was looking a little forlorn in the tub tonight. I asked him "Is it okay if I worry about you a little bit?" He said "Sure. I mini size amount."

He also admitted to me that he is sad about his hair falling out. He tells me it doesn't hurt, physcially, but that he misses his hair. I'm glad he can verbalize that. I've sensed this being true for some time now but he has never confessed as much.

I also think the constant port in, port out this week was hard on him. He never shed a tear or complained, but his spark seems a little less bright. He still chose to NOT stay accessed and we honored that decision. So, instead of one port in with a port out 4 days later, he was accessed 5 times this week. 5 times a needle went in and out of his chest. That doesn't include the needle that went into his spine. My spark has all but gone out.

Please keep those prayers coming. We need them ever so badly. Some of you know how hard this journey is. Some of you don't, and I pray you never do. Trust us, hard doesn't begin to encapsulate all that this journey is. God is faithful. In our weakness he is there. It's a beautiful reality that I wish all people could know.

We love you. We are grateful for you, all!

Wednesday, November 16, 2016

Wednesday

Jake took Dempsey to CHOC this morning for another chemo infusion. This is number 2 of 4 for this week.

It went well. Took a little while to be seen but went smoothly.

Docs wanted Dempsey to poop since he didn't yesterday. He just knocked that one out a short while ago. *thumbs up* Suck it up, folks, us cancer families celebrate ALL KINDS OF BODILY FUNCTIONS amid this ride. ;-)

Dempsey helped me make a toasted cheese and ham sandwich when he got home. He loves to help in the kitchen. I try to foster that desire in him all the while curbing my I-want-it-done-now-and-right mentality.

Then, he needed some time to sort out his emotions... or get some distance from some frustration. Sawyer wanted to do costume time. Dempsey had agreed originally and then changed his mind, much to Sawyer's chagrin.

While Dempsey was going potty, he asked to play wii. I reminded him that Sawyer wanted to play dart guns with him. He agreed to play. I gently encouraged him "Remember you're agreement." He replied, "I know... let my yes be yes and my no be no." Awesome!

Now, he has Sawyer are playing dart guns out back. *thumbs up* I hear whistle sounds too. Good times.


Supporters,
Thank you so much for your prayers and various methods of support. I cannot begin to tell you the positive impact you are having on our hearts and lives. Dempsey's journey would surely be a different one without you. The Lord certainly has his fingerprints on this experience. Don't get me wrong, if I could avoid it, I would- like the plague. But, alas, I cannot. Several of you have told me that God chose me (us) because we are strong. I respectfully disagree. I am weak! We are weak! However, we ARE teachable. I think THAT is why the Lord saw fit to bless us with this storyline. We are learning so very much through it and I pray that we leave a legacy that honors God and brings him glory for all to see.
May He, the God who knows all, hears all, sees all, created all... be with you in tangible ways.
Cheers.

A Long Day at CHOC || Tuesday

Off we all go.
No breakfast (in solidarity w/ Demps)
Lumbar puncture (anesthesia and needle in spine w/ chemo injection)
Chemo infusions (hours)

No US History class for Sawyer so that he can keep Dempsey company. Yay for homeschooling and freedom!

We drove into a wall of cloud some where around Anaheim.
Grateful for carpool lanes!

This how we roll at CHOC OPI- playing chess on an iPhone.
Building critical thinking skills, strategizing, and having fun.

Sportin' this awesome bracelet from the @kickcancermovement retreat at CHOC OPI. We have a LONG day (8 hrs+) today. I chose to pur dōTERRA's Whisper on the bracelet to diffuse throughout the day. That little purple egg on Dempsey's chair is a portable diffuser. It is diffusing a bit if: OnGaurd, Balance, Breathe, and frankincense. I also used DigestZen Touch and Frankincense Touch around Dempsey's belly button to help stave off the negative tummy side effects.
Lord, watch over Dempsey. Fill his cells with your presence and power. Keep negative side effects away. I pray for positive distractions throughout the day and that his mind only remembers the good. Thank you for Sawyer! I pray he provides fun companionship for Demps today. Lord, give Jake and I strength to make it through. Amen



Because... some days... you just have to eat your feelings.

Post lumbar puncture w/ chemo infusion. First foods: NEOLIFE Shake, chocolate flavor. Taking it slow since it's been 15 hrs since he had food. NEOLIFE shakes are easy on the body because the protein is predigested... that makes kidneys happy. Plus, this will keep his blood sugar under control so as to avoid spikes and plummets. 

Daddy & Sawyer left for a bit. When they returned they had FINDING DORI! What a great way to spend some time at OPI.

More coping in the form of UNO. 

...we are leaving CHOC OPI only to return tomorrow... and Thursday... and Friday... and Tuesday for ANOTHER lumbar puncture... and Wednesday-Friday.
Lord, help us!

You just sleep my Beautiful. 

We went walking as a family.

THIS! This is a delicious serving of proof that your prayers are being heard and answered (affirmatively). Enjoy and be grateful (just try to be as grateful as me.) Just after this photo was a time of RUNNING by Mr. Dempsey! Praising God.