Saturday Pics

What my bed looked like this morning because Jake was catching a little more sleep on the sofa.

A bag of lovelies from my friends Amy and Jessica who, God bless them, held and hosted a doTERRA fundraiser. I hear tale of a husband (not in attendance) who is sleeping better these nights because of the oils his wife purchased at this very fundraising event. Oils for the win-win!

You guys... I have NEVER had tulips before in my life! They are gorgeous. (Yes, dad, I used the word gorgeous.)  As you will see below, the lovely message that came with these beauties didn't have a name. So what do you do when that happens in this era of social media? You post a public declaration of gratitude and hope the sender claims responsibility. She did. Her name is Geri and she is amazingly thoughtful. Y'all, I cannot tell you how awesome it is to receive blessings like this from people who had their heart tugged and then acted on that. Priceless. I may not have the flowers themselves forever but I will have these photos and this memory.

Every day I hop on this page to check it. Not because of greed, but because this number represents more than money. It shows me the hearts of humans. The love that people are pouring over us in honor of our son. The support people are showing Dempsey (and us) through this journey. It proves to me there is GOOD in this world. It reminds me that kindness, no matter the size, matters and leaves a lasting imprint on the heart.

Sawyer. Oh, Sawyer. So much wonderful wrapped up in this growing body. So much big brother too. This kid can go from deep affection to needless pestering in no time flat! Thankfully some things haven't changed.

What else do you do after a solid 2 miles of Jeeping but come inside, snuggle with Daddy, and watch countless trailers for movies. Chuckles. Laughs. Head shakes. And a palm to the face... by Dempsey.

THIS IS LIFE.

My Baby... Not My Baby

Dempsey IS my baby.

My baby is energetic. Happy. Adventurous. Laughs easily. Plays hard.
Runs fast. Is independent. Is courageous. Learns quickly. Minds his
manners. Helps where he can. Eager to learn. Active and slender build.
Loves friends. Talks a lot. Asks questions. Tries new things.

Right now he's not my baby.
He has little energy. Even he had it he couldn't do much with it.
Perhaps that why he seems to not have energy. He says he's happy but
it's not the happy he was 2 months ago. He mostly smiles because he
thinks he's supposed to. You know, how you smile at someone because
they smiled at you first. He is the opposite of adventurous right now
because he knows his body isn't functioning right. He doesn't laugh as
freely as he did those short months ago. Because of this, when he does
laugh we eat it up. Play hard? It's hard to play hard when your body
won't let you do what you want to do. Running? Please. My baby can't
walk on his own. Independence is fickle. It requires you to not need
someone... he needs someone right now. Courageous. Sure. But not how
he was. He still learns quickly but he doesn't really want to talk
much right now. Manners are tough these days because of how the
steroids are altering his personality. Disrespect still doesn't fly
around here but the boundaries have expanded since starting steroids.
He still enjoys helping but it looks VERY different than it did. He's
not really eager to do anything except eat- thank you steroids. His
little body is anything but slender right now. His belly and cheeks
have ballooned. His little lips just don't move like they did before
this. He still loves friends but it doesn't come across because he
knows he can't go play with them and the steroids have zapped his
enthusiasm. Our chatter box has clammed up. It is so hard to get
anything out of him. This is hard for this mommy. He doesn't really
ask questions. He doesn't really communicate right now. He is not at
all interested in trying new things. Even things that he's had or done
before... if it's been awhile since he's had it he fusses. So
frustrating.

I keep trying to look a bit down the road of this journey because
these things are all temporary. Praise God these things are temporary.
I'm just so scared that these things are changing my baby. I like who
he was. I liked where he was headed. He seems so closed off right now.
I'm trying so hard to extend the grace he needs but fear creeps in.
The moment I correct him, on anything, he cries or yells. Granted, he
still isn't anywhere near a tyrannical child or anything.

At the moment, I can hear him and Sawyer playing well together in the
playroom. This after Sawyer was a putz for the sake of being a putz,
made Dempsey whine, I reprimanded BOTH of them and made them turn off
technology.

Parenting a child with cancer is a strange reality which I cannot
explain to anyone who hasn't lived it. Trust me, it's strange.

Fri Photos

Please Pray for Upcoming Procedures

Prayer Warriors,

I am asking that you cover the hours leading up to, during, and after Dempsey's upcoming procedures. Next week he has two.

Monday @ 9:30am:

• Bone marrow biopsy: This tells us if Induction has put the cancer into remission.
  Pray for remission. Pray for miraculous healing. Pray for PERFECT test results. Pray for zero pain. Pray for protection during procedure. Pray against negative side effects. Pray against complications. Pray for courage. Pray for the medical staff. Pray for calm nerves. Pray as you feel led.
• Lumbar puncture: This is to make sure there are still no leukemia cells in the CSF (cerebral spinal fluid) and they will inject a small amount of chemo to make sure to kill any potential cancer cells
  Pray for perfect procedure. Pray for no cancer cells in CSF. Pray for immediate closure of puncture site. Pray against complications. Pray against negative side effects.

Tuesday @ 1:30pm:

• MRI: This is to check and make sure his mastoiditis (ear infection) is continuing to clear up.
  Pray the infection is GONE. Pray for no complications from anesthesia. Pray for PERFECT results. Pray for calm nerves.

May 16th:

• Consolidation begins. This is the second phase of Dempsey's treatment plan. I don't know enough details to explain it to you at this point. Stay tuned.
  Pray for perfect results. Pray against complications. Pray against fevers/ colds/ infections. Pray against negative side effects. Pray away the effects of the Induction phase. Pray for strength and a determination to kick cancer's booty.

May 17th:

• Infectious Disease follow up: This is to make sure Dempsey's ear infection is under control and no alterations need to be made to his antibiotic regimen.
  Pray for perfect results. Pray for positive progress and change to treatment. Pray for doctor's wisdom. Pray the right course, should one be needed, be planned and executed. Pray that the infection is GONE, never to return, so we can focus solely on the leukemia.

ENT: we still need to have an appointment set up for a doctor to follow up on Dempsey's ear. This is in the works thanks to our CHOC case manager. We were supposed to have this appointment this Wednesday but, come to find out, the doctor they made it with wasn't in-network so it got cancelled. 

Sincerely,

The Momma

Powerful Song!

One day, as I was driving back to CHOC from my night away, I decided to turn the radio on. I chose 95.9 FM KFSH. I don't regularly listen to the radio anymore. But this particular morning I needed something to drown out the thoughts I was losing control of.

God in his mercy played this for me.



I bawled the whole way to CHOC. Almost 17 miles or 30 minutes.

The release that I needed was profound. The release I experienced was akin to the Hoover dam bursting. It was refreshing to walk away from because the pain and fear had been washed away by such powerfully true lyrics.

We've all been where this song speaks of. This video made me lose it this morning. I had never watched it before. One of the main threads in this video, you'll all recognize, was in a similar place as Dempsey. Lost it!

It's not exactly what you'd call "worship music" but it brought me to the thrown room on that solitary drive that morning.

Enjoy.

A Song That is Evermore Real to Me

This.

These words, together with the music... gets me every time.

Now, as I stand smack dab in the center of my city watching the Body of Christ rally around me... I can believe there are greater things to be done... greater things yet to come because there is no one like our God!!

This is not exactly how I would have chosen to rally a city, a community, but Dempsey's cancer is certainly shaking up this community and unifying it. It's a beautiful thing to watch and even more precious to experience.

Bless you.




Lyrics

"God Of This City"

You're the God of this City

You're the King of these people

You're the Lord of this nation

You are

You're the Light in this darkness

You're the Hope to the hopeless

You're the Peace to the restless

You are

There is no one like our God

There is no one like our God

For greater things have yet to come

And greater things are still to be done in this City

Greater thing have yet to come

And greater things are still to be done in this City

There is no one like our God

There is no one like our God

For greater things have yet to come

And greater things are still to be done in this City

Greater things have yet to come

And greater things are still to be done here

There is no one like our god

There is no one like our God

Greater things have yet to come

And greater things are still to be done in this City

Greater things have yet to come

And greater things are still to be done here

Photos

Tears Streaming

Ever been caught off guard by your own emotions? I have. Just now. So strange how they can be inside you, created by you, and you can't see them coming or stop them from coming.

My best friend and her husband dropped by this evening. It's been too long since we've seen them. It was a good visit, but always too short. Thankfully they live here now. Anyway, among the reasons for their visit was a drop off. Carisa had stopped by WACC to drop of those orange bracelets and was given gifts of love to bring to us.

I just got finished opening the small envelopes overflowing with great love. As I was reading the cards with hand written notes of love, encouragement, scripture... my eyes began to leak. Then I found my self quietly gasping for air.

I was undone. My emotions had found the weak point and busted through like a tornado.

I just sat there. Holding the cards. Looking at the gift cards, the money, the gifts... I was (am) overwhelmed. I sat there thinking we don't deserve this. I had other thoughts similar to people really love us this much?

The flip side of these thoughts is yes, people DO love us this much! There is evidence all around us of that fact.

What do you do with the desire to repay, thank, hug, make lavish promises to people who have blessed you so? I want to say I'll pay you back... or I'll be there for you should you ever need something. I pray that no one ever needs me like I need them right now. Not because I'm selfish and don't want to give or bless... but because it would mean they were going through something so awful and so much bigger than they ever imagined. I would not wish that upon anyone.

So, I cry.

I cry because I'm loved unconditionally... by humans. These humans are living testimonies of God's love for his creation. These humans are proof of good in this world... the kind of good that I believe God intended the world to be filled with. The kind of good that has no explanation. I cry because there is no way to repay this kind of kindness. That is also not the point. Repayment. There are no strings attached to these gifts of love. There is only support and go get 'em encouragement. I cry because the generosity hits in the recesses of my imagination. I never imagined I could ever need such generosity. But, here I sit, needing it. Needing it bad. And it shows up. Daily.

I cry for sad reasons too. My baby is sick. Really sick. I cry because his cheeks and belly are so bloated. He hardly resembles my Dempsey. I cry because it terrifies me that in order to get him well again we have to pump him full of such toxic substances. I'm scared folks. I cry because there is nothing I can do. I cannot make him well. I cannot heal him. I cannot plan how to make him well. I know next to nothing about his treatment. I cry because trusting doctors is hard for me. I cry because some prayers are going unanswered. I cry because I feel weak. I cry because I don't want my Sawyer to feel lost in all of this. I cry because I don't know how to plan a birthday for Sawyer in a life stage that is so not conducive to party-throwing. I cry because I miss normal. I miss the way it was. I miss taking life a little for granted. I cry because I have to use finger quotes when I say things like "healthy", "fine", "normal", "good", "strong", and many more. I cry because I'm overwhelmed. Life keeps going. Responsibilities are still ever-present. We have to adult (be grown ups). We still have to pay pills... parent... keep up the house... do laundry... do dishes... care for cats... teach/ school... grocery shop. We still have to LIVE on top of ferrying Dempsey to so many doctors, clinic visits, physical therapy sessions, procedures... not to mention loving him and encouraging him to fight through pain and a new normal that is mind-boggling. I cry because sometimes I don't believe everything is going to be all right. I know I'm not supposed to worry. I know that most children with Dempsey's diagnosis are perfectly healthy after treatment with no complications or resurgence. I know there is hope. I know there is a grander plan. Sometimes I just can't see beyond the fog of fear and feeling helpless.

I don't share this for pity. I share this to be real. Honest. Raw. I share this so you will know exactly how to pray. Exactly how you might support- whatever your ability. I share this as therapy for myself. I share this so that you might catch a glimpse of what this journey is like for those families suffering and trudging through it. I share so you can see I don't have it all together and perhaps I don't posses the strength it appears I do. I share it because I don't know what else to do with it.


Lord in Heaven,
Please heal my baby. From the red hairs on his head to the still-small toes on his feet... wipe this leukemia away. You still work miracles. I want one. I have no right to ask except that you tell me to. I have sought your Kingdom and I see it clearer than I ever have before. Bless those who have blessed us. Multiply your provision for their needs. I am not so foolish as to believe others are not struggling while we are struggling. Strife is all around. I pray that you calm the storms in all our lives, allow us to find footing on the Rock. Let us catch our breath so that we might be able to stand and fight another day, Lord. Again, I beg of you, please heal my baby.
With a desperate faith,
Me

Special Trike: UPDATE

The Amtryke, that special tricycle to help with Dempsey's physical therapy...
HAS BEEN PURCHASED!!

It is ordered and should be shipped within a week.

Thank you for your prayers and support in helping us get this for Dempsey. He NEEDS to be able to build those muscles again safely. The main reason for such a special trike is safety. With his leukemia wreaking havoc on his platelets, clotting ability is diminished and is a real concern. He can't afford to get even small scrapes because the bleeding could be super serious.

We went through an organization called SoCalTrykers.

Orange Bracelets: UPDATE

For those of you interested in purchasing orange bracelets in support of Dempsey and his leukemia journey, you can contact Nina at Whittier Area Community Church (562) 945-4500. If Nina isn't available her assistant Judi is.

If you have to leave a message, please leave the following information:

• First and Last name
• Phone number to reach you at
• How many bracelets you want

THANK YOU!!

Insurance, Need I Say More

So it begins. The woeful journey into insurance land.

Thankfully Jake was paying attention. Those papers that come in the mail... they actually contain information that is worth acquainting yourself with. Jake was noticing that so all of the claims coming from our insurance regarding Dempsey were being "denied". He got to thinkin', "Something's not right here." He contacted the insurance company and it turns out that they didn't have Dempsey correctly dialed in to our insurance. HELLO!!

Thankfully, that is being addressed and fixed. What a scary thought- Dempsey not being covered for this journey.

Then, today, Jake gets a call from the ENT people who we were supposed to follow up with tomorrow. That appointment has been cancelled because the doctor it was scheduled with is no contracted with our insurance. Our case manager, Dia, is looking into it for us. There is another ENT doc in their office who is contracted with our insurance but this late in the game there are no appointments available. It's crazy to think that there is this much drama as a new out-patient when we were just being checked in on as an in-patient.

The MRI people called today too. They were calling to finish the registration for Dempsey's MRI next Tuesday (5/10/16). The charge for this service is using up the rest of Dempsey's individual deductible and is moving us into the section of our insurance called co-insurance. Basically, we're responsible for over $1,000 out of pocket for this imaging. Here lies the beginning of the financial stresses.

We were able to order that special trike for Dempsey. This is not covered, at all, by insurance. This is $630 out of pocket- actually paid for by generous givers like you. A few people reached out and said they wanted their donated funds directed toward this purchase. We are so grateful.

We are in the process of getting a pediatric walker for Demps too. This is paid for, in part, by insurance. After his fall yesterday and a near miss, I am confident getting this walker is the right move. According to the gentleman I spoke to from Apria Healthcare yesterday, the out of pocket portion is miniscule. Praise God.

To be honest, it is SUPER scary to look at what the financial implications of this cancer journey can be for us. Down right terrifying at times. Working hard to hold onto that faith I had a week ago when I said "God brought us to this, he will bring us through this." One way or another, we will be all right because God work all things together for good... whether in this life or the next. Still, it doesn't stop the frustration we feel with the insurance/ medical billing world. What a convoluted system! Seems like it should be simpler than it is. Right?!

Prayer requests:
Pray that the medical billing and insurance headaches will go away
Pray for grace and discernment as we walk through insurance land
Pray that God will go before us and work all things out
Pray that we will be wise and diligent in our appointment making and procedure scheduling
Pray that details will not get lost and balls dropped
Pray that our support hangs on and hangs around
Pray for acceptance on Dempsey's part-it is so hard to be a kid when you can't be a kid
Pray for restorative rest for us parents (we're tired)
Pray for open and clear commnication

THANK YOU! WE LOVE YOU1!

Brothers, A Motto, and Walking

First Clinic Infusion

This afternoon Dempsey had his first OPI (out patient infusion) clinic visit. It's in the same building where he had his first clinic visit for labs/ blood draw. This appointment went well. PRAISE GOD!! More answered prayers.

FRIENDS, YOUR PRAYERS ARE BEING ANSWERED!!!

We have figured out that the numbing cream we put on Dempsey's port area is most efficient if it's on longer than an hour. This visit was less stressful, overall, than the blood draw. It seemed like Little Dude has zero pain and his only frustration was the wait.... oh, and if someone got in the way of him playing his games on his iphone.

It seems as though Dempsey will be a Monday guy. That means most of his clinic appointments will be on Mondays. Kinda ruins my work schedule but we'll see about switching that around when the time comes.

When we got to the reception desk, the woman working it asked for the patient's name. When we said "Dempsey" she goes "Ooooo, I've heard so much about you." What?! We've never been here before and Dempsey's reputation proceeds him? Thankfully it was a positive thing. Turns out TWO people had shared how precious he was. On Friday, as they were discussing Monday's patients, Dana (his first clinic nurse- amazing!) told the staff "Oh, he is just the sweetest, cutest little boy." Then, when Courtney (today's nurse we had one day when in-patient) saw she had him on her agenda today she told people "Oh yay, he's coming in today! This boy is adorable." I love that the nurses all love and adore my baby. He doesn't realize what a catch he is... but the world does. *happy dance*

We are thankful that his future appointments are earlier in the day.

Prayer requests:
Pray against negative side effects
Pray against complications
Pray protection over his little body
Pray increased strength for his steroid-ridden muscles/ joints
Pray pain away from his previously cancer-filled bones
Pray for his emotions- he doesn't know what he's feeling but I know he's a ball of emotion (it breaks my heart that he can't express what he's feeling yet)
Pray against fear
Pray for determination
Pray he uses his anger and frustration to push himself
Pray for a smooth journey through to cancer's end
Pray for our support structure as it will be well-used by the end of this journey
Pray that we can get the needed items for his physical therapy FAST (pediatric walker/ special tryke)
Pray that the insurance hiccups are addressed and fixed accurately and expeditiously
Pray that God goes before him in all of his appointments and procedures to smooth out any potential kinks or bumps

THANK YOU!

Photo Bomb, Huge Lemons, Open Road, etc