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.
Wednesday, November 30, 2016
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?
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)
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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
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.
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!
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.
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.
Monday, November 14, 2016
DI Continues
Dempsey had more labs today.
This afternoon I received a call from CHOC OPI reminding us of his procedure at 10:30am with an arrival time of 8:30am. He will be NPO (cannot eat after midnight). He will be given anesthesia- again. He will be infused for hours on top of that.
IT IS TOO MUCH!! WHY MUST THEY COMBINE SO MUCH AT ONCE? His poor tiny body. Praising God that he is strong and resilient. Your prayers are working. They are helping our boy THRIVE through this ridiculous journey.
So, here's the schedule you can pray over:
Tuesday- lumbar puncture (needle in spine) and infusion (hours-long day)
Wednesday- infusions
Thursday- infusions
Friday- infusions
I believe we repeat this schedule next week as well. Happy Thanksgiving...
Currenlty, this mama feel like the anchor of a cruise liner. Suffocating under the water, feeling pressed by the pressure of that water, and being drug across the ocean floor- churning up all kinds of stuff and only to have it washed away to make room for more stuff. So heavy. The weight of this journey is... [insert grossly exaggerated adjective to describe unpleasant].
Dempsey is "fine". He has no negative side effects. Well, hair loss but that's not an inconvenience or anything. He has these little pimple-like bumps on his left cheek under his eye (other cancer moms call it "chemo acne") but that is even going away thanks to NEOLIFE/ Nutriance's Aloe Vera Gel and doTERRA's Anti-Aging Blend (Immortelle). Anti-aging... that sounds funny for a 5yr old. But it has AWESOME oils in it: frankincense, helichrysum, hawaiian sandalwood, lavender, myrrh and rose.
Dempsey:
still runs
still laughs
still rough houses
still argues
still uses manners
still climbs
still kicks soccer balls
still plays hockey in the street
still trikes
still plays monkey in the middle with Granddad
still eats better than the rest of us
still drinks his mass amounts of whole food supplements #dempseystrong
still watches TV
still plays wii
still colors
still loves the color RED
still watches his sugar and salt
still helps when asked
still pouts when he has to water the plants
still enjoys his detox baths
still loves watching JellyTelly shows
still wants to make scrambled eggs
still wants to learn new things
still wants to do new things
still likes to snuggle
still loves his blanket (that Auntie Tabitha made for Sawyer before he was born)
still loves his cheetah named Puppy
still loves playdates with friends
still misses "normalcy"
still asks when his port will come out (currently 1,020 days)
still loves Legos
still drinks a ton of water
still has chemotions
still sleeps well
still prays for others
still opens doors for people
still loves ketchup
still thinks of his brother in generous ways (such a sweet hearted boy)
still has hard days
But most importantly Dempsey... is still Dempsey.
We have much to be thankful for... now, if I could just clear away the darkness so I can SEE these things instead of just know they're there. Maybe I just need a few more days.
This afternoon I received a call from CHOC OPI reminding us of his procedure at 10:30am with an arrival time of 8:30am. He will be NPO (cannot eat after midnight). He will be given anesthesia- again. He will be infused for hours on top of that.
IT IS TOO MUCH!! WHY MUST THEY COMBINE SO MUCH AT ONCE? His poor tiny body. Praising God that he is strong and resilient. Your prayers are working. They are helping our boy THRIVE through this ridiculous journey.
So, here's the schedule you can pray over:
Tuesday- lumbar puncture (needle in spine) and infusion (hours-long day)
Wednesday- infusions
Thursday- infusions
Friday- infusions
I believe we repeat this schedule next week as well. Happy Thanksgiving...
Currenlty, this mama feel like the anchor of a cruise liner. Suffocating under the water, feeling pressed by the pressure of that water, and being drug across the ocean floor- churning up all kinds of stuff and only to have it washed away to make room for more stuff. So heavy. The weight of this journey is... [insert grossly exaggerated adjective to describe unpleasant].
Dempsey is "fine". He has no negative side effects. Well, hair loss but that's not an inconvenience or anything. He has these little pimple-like bumps on his left cheek under his eye (other cancer moms call it "chemo acne") but that is even going away thanks to NEOLIFE/ Nutriance's Aloe Vera Gel and doTERRA's Anti-Aging Blend (Immortelle). Anti-aging... that sounds funny for a 5yr old. But it has AWESOME oils in it: frankincense, helichrysum, hawaiian sandalwood, lavender, myrrh and rose.
Dempsey:
still runs
still laughs
still rough houses
still argues
still uses manners
still climbs
still kicks soccer balls
still plays hockey in the street
still trikes
still plays monkey in the middle with Granddad
still eats better than the rest of us
still drinks his mass amounts of whole food supplements #dempseystrong
still watches TV
still plays wii
still colors
still loves the color RED
still watches his sugar and salt
still helps when asked
still pouts when he has to water the plants
still enjoys his detox baths
still loves watching JellyTelly shows
still wants to make scrambled eggs
still wants to learn new things
still wants to do new things
still likes to snuggle
still loves his blanket (that Auntie Tabitha made for Sawyer before he was born)
still loves his cheetah named Puppy
still loves playdates with friends
still misses "normalcy"
still asks when his port will come out (currently 1,020 days)
still loves Legos
still drinks a ton of water
still has chemotions
still sleeps well
still prays for others
still opens doors for people
still loves ketchup
still thinks of his brother in generous ways (such a sweet hearted boy)
still has hard days
But most importantly Dempsey... is still Dempsey.
We have much to be thankful for... now, if I could just clear away the darkness so I can SEE these things instead of just know they're there. Maybe I just need a few more days.
Friday, November 11, 2016
Counts Too Low || More Labs on Monday
Dempsey did NOT make counts, again. He needs to be at 750 and is only at 694. I don't know why his body isn't rebounding like normal and that gives me pause.
I am not good at this cancer thing. I hate that his immune system looks like that of a yo-yo being worked by a master yo-yo-er. That cannot be good for such a little body (or any body).
Lord, please protect my baby. Help me strengthen the body you gave him. Lead to the right foods and care he needs. Give me peace, Lord. I try so hard not to worry. To lean into your proven faithfulness. I'm just scared, Father. Scared of something I do not understand. Help me to be teachable and patient. Help me to be ever-discerning of YOUR path for Dempsey, not what I would desire, for you know all. Amen
I am not good at this cancer thing. I hate that his immune system looks like that of a yo-yo being worked by a master yo-yo-er. That cannot be good for such a little body (or any body).
Lord, please protect my baby. Help me strengthen the body you gave him. Lead to the right foods and care he needs. Give me peace, Lord. I try so hard not to worry. To lean into your proven faithfulness. I'm just scared, Father. Scared of something I do not understand. Help me to be teachable and patient. Help me to be ever-discerning of YOUR path for Dempsey, not what I would desire, for you know all. Amen
Wednesday, November 9, 2016
Change of Plans
So, there's been a change of plans.
Dempsey didn't make counts on Monday. His ANC was only 650 and it needs to be 750 or greater to receive chemo.
So, we wait.
Friday he'll have labs again to check his ANC level. If he makes counts that day then he'll move forward with treatment on Monday or Tuesday.
If all goes as planned then, Dempsey will have his last infusion on Thanksgiving. I think that's what Jake said.
Cancer doesn't understand holidays.
I hate cancer.
Dempsey didn't make counts on Monday. His ANC was only 650 and it needs to be 750 or greater to receive chemo.
So, we wait.
Friday he'll have labs again to check his ANC level. If he makes counts that day then he'll move forward with treatment on Monday or Tuesday.
If all goes as planned then, Dempsey will have his last infusion on Thanksgiving. I think that's what Jake said.
Cancer doesn't understand holidays.
I hate cancer.
Monday, November 7, 2016
A Busy Week of Appointments
Thursday, November 3, 2016
It Came
We said we were ready.
We were not ready.
This is hard.
Emotionally.
Mentally.
Physically.
Parentally.
Every photo I take after this point is me grasping at hairs (not straws)... trying to hold onto them as long as possible. No, it's not because they represent his identity...
scroll on to see what I'm talking about.
In just two days he has lost handfuls of hair. Is he less than now? NO! If anything he is more. He is more courageous. He is growing more character. He is expressing more. Feeling more. Learning more. (**He just called out to me and said "That was a great salad, Mom.") He is so much more than his red hair!!
As each strand falls from his scalp I am reminded of what Scripture tells us. In Matthew 10 it says:
And even the very hairs of your head are all numbered.
So don’t be afraid; you are worth more than many sparrows.
The Lord tells us we are precious to Him. So precious, in fact, that he knows the number of hairs on our head. This means he knows what happens to those hairs and he cares so very deeply for the head those hairs belong to.
My precious boy is no different. God loves him and knows better what is happening to him (and why) than we could ever grasp. I find peace in that although comfort comes and goes.
So, why, then, is it so cotton-pickin' hard (I would usually use stronger language here) to watch as his hair falls out strand by strand... batch by batch?
BECAUSE IT SYMBOLIZES FAILURE TO ME.
I know this is irrational! I know I did NOT fail my son!
And yet, as his mama I feel it is my job to protect him absolutely. Something that I will never be able to do... yet I feel it is my job. If I cannot keep those hairs on his head then I have failed.
Don't bother trying to make this feel better by saying "You didn't fail him, Coral." I know, in my heart of hearts, that I did nothing wrong. Every other aspect of this child screams HEALTH and VITALITY. I AM/ WE ARE doing an awesome job. That isn't pride speaking... it's reality. It is hard. It is a worthy job. The Lord is providing for me in ways I never knew I needed. It is beautiful. Am I 100% successful? No. But you know what? That was never going to happen... is never going to happen. That's a number only God can reach. And praise him for reaching it always, without fail!!!
A super sweet, lovely young lady I've never met but feel super connected to, commented the following on my Facebook:
💔 agh. I'm a natural red head too. ( I say strawberry blonde tho lol) but like you posted and like I've learned... it is not our identity ❤ I'm not going to sugar coat this one because quite honestly I'm still dealing with accepting my short hair, but please know I will pray for your strength. My mom seemed to be more emotional about the initial hair loss phase than I was. If there's any light from my hair loss experience it was that I DIDNT LOSE IT ALL! ❤ there is hope! * big hug * ❤❤❤❤❤❤❤
Here was my response:
you bless me. No sugar-coating necessary girl! This is all part and parcel of this cancer journey. It is a bit harder, I think, for us mamas because we work so hard to keep our babies (even adult ones) safe and watching the strands of hair shimmering in our hands instead of on the heads they belong to signifies an aspect of failure on our part. Yes, it is imagined failure- we didn't fail- but it feels very real. I think of you often and pray over you, friend I've never met. ❤🙏😘
Even now, my Dempsey-boy is playing wii and yelling at the TV. It's glorious!!! He is still a goofball. He still runs. He still fights with his brother. He is still thoughtful beyond belief. He still feels/ loves deeply. He is strong. Happy. Vibrant. He occasionally asks, "How many more days until my port is out?" It's still hard to answer him with "Over a thousand, baby."
I work HARD to keep communication open- positive and negative. I need my boys to KNOW that I am a SAFE place for them to learn and grow in expressing themselves. My Sawyer has felt so safe he has told me, tears streaming down his face, "I hate you right now, Mom." I can receive that. I remember hating my parents too. Every kid does. Allowing them that freedom and safety allows for me to open up dialog and discussion where they can flesh out their feelings. It really is special... even when it's painful. This scenario is the same with Dempsey. Every time I brush his hair, run my fingers through it, brush off the fallen strands from his shoulders, or grip gently to remove the strands that have let go... I show him the hairs and give him a chance to dialog about it. Most of the time it's "Oh, that's a lot of hair." He is not scared by it. Since he still has red on his head I think he is just baffled at the amount of hair he's lost and how much he still has left. I'm sure he is processing all of this.
Jake and I keep reminding him that this is OKAY. This is part of the process and caused by his treatment. We shrug our shoulders and say things like "Eh, it's just hair and we know it will grow back" with smiles on our faces, joviality it in our tones, and resignation in our hearts. We try to make it a light topic so as not to evoke fear, yet give it enough space and time in our conversations to convey the notion that it is a very real thing to have feelings about. Feelings worth sharing. Tonight at dinner we were even talking about potential costumes Dempsey could wear with a bald head. We came up with: Mr Freeze, Lex Luthor, Captain Picard, & Professor X. Have any to add?
Please keep us in prayer. You have been so faithful with that so far. We are deeply gratfeul. We sense your prayers and the presence of God in our journey.
WE LOVE AND VALUE YOU!!
My website
is a GREAT thing to share with people in any stage of a cancer journey!
NeoLife Rally
If you are curious about learning more about the supplements we KNOW are keeping Dempsey stronger than other cancer kiddos you have the opportunity in January at the corporate rally events!!
I only have 8 tickets left for the west coast rally!
You want one? Comment on this post. First come, first served.
January 14th 2017 9am-5pm || I need to figure out lunch plans.
As always, this link shares practical ways you can help.
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