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.
Saturday, November 19, 2016
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 dÅTERRA'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.
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