New Phase: Delayed Intensification

This new phase brings more drugs. *shudder* I have linked to the drugs' information pages, which shows side effects. Please click on each of them and pray against every single negative side effect listed. We want Dempsey covered in prayer before, during, and after this phase of treatment. We LOVE that the doctors are pleasantly baffled by his continuous thriving through treatment.

Would you be surprised to know NOT ONE doctor has asked "What are you doing to keep Dempsey so strong?" Now, just about every nurse Dempsey had asked us that question! The one doctor who was closest to engaging me in a conversation about our regimens was just talking to me about his smoothies. She showed me his liver counts and said "Whatever you're doing, keep doing it."

The drug line up:

• Vincristine
  Dempsey has had this before and has handled it well. For this next phase he has five infusions of this.
• Deximethisone
  This is a steroid. Thankfully he only gets this a total of 14 days, one week on-one week off. The last time he had this he had it for 30 days straight and he had the swollen face and tummy. He cleared this out of his system quickly, praise God.
• Doxorubicin
  This is a new-to-Dempsey drug. I am researching this drug to see its side effects and what organs it attacks the most. I know Dempsey's heart is at risk with this drug (says the doctors) and the side effects list is EXSTENSIVE! Dempsey gets three doses of this drug.
• IT MTX (intrathecal methatrexate)
  This is chemo into his cerebral spinal fluis via lumbar puncture. Dempsey will have THREE of these in the next two months. He has had this before and not had any problems, praise God.
• Cyclophosphamide
  Dempsey gets this drug once in this phase. He has had this drug before with no problems, praise God.
• Cytarabine
  Dempsey has had this drug before with no problems, praise God.
• Thioguanine
  This is a new-to-Dempsey drug. So, more research into how to prime and protect Dempsey's organs/ body. It looks like his liver will be hit hardest...

You guys, these drugs are gnarly. It is hard to know that this is the best we have for our kids... Please continue to pray protection over Dempsey's body. His little organs are being hit so very hard by so many toxic drugs. Most of these drugs are known to be associated or cause latent or secondary cancers and health concerns. Please be praying protection over Dempsey's future NOW. The Lord brought Dempsey to this place and He is being faithful to protect him. I am confident the Lord will continue to protect Dempsey and we are being diligent to protect his little body (mind and spirit) with what we know and what we have.

We are tired. This is taxing on so many levels. Please continue to also pray protection over our marriage. A journey like this so easily creates distance and tension. Thankfully we haven't experienced any serious derailments and we are prayerful not to. However, we always need extra prayer support in this area. You can never have too much prayer support.

We are immensely grateful for each and every one of you. Your prayers and support are priceless to us and touch our hearts in the deepest places.

WE STILL NEED YOU!!!

If you are looking for ways to help, or if people you know have asked about this, this link will help: Ways To Help

If people have asked "How is that kid doing so well and looking so good?" Please send them to my website, which has all that information- www.CoralKenagy.com

Round 4: Update

So, today is Day 3 of Round 4. This is the FINAL ROUND of this phase in Dempsey's leukemia treatment journey. I am eager to praise God for the completion of another round which means we are that much closer to the end. Granted, the "end" is still 1,096 days away (if we use Sept 1, 2019 as the end date).
ONE THOUSAND NINETY-SIX DAYS!! That feels like forever.

Lets get back to the positives, shall we?

Dempsey is kicking A this round as well. He continues to confound the staff here at CHOC with his numbers, energy, physical appearance, positive attitude, manners, humorous expressions, and all-around positive presence. It is such a blessing to mother this child. He not only makes the staff happy but me and his dad as well. When I step back and look at him for WHO HE IS, my heart just bursts with joy because God has gifted me with the opportunity to mother and raise this precious little human. What a gift!

Are you interested in what these Rounds have been about? Want to know what HD MTX stands for? I'll share with you a little bit about this phase of treatment.
Dempsey is in a phase called Interim Maintenance. For Dempsey, this phase is more intense than for the majority of A-L-L patients. Most A-L-L patients are given a Standard Risk diagnosis. Dempsey was technically Very High Risk (the highest rating) but he had "favorable genes" which knocked him to the High Risk category (the middle of the road). However, because he was initially VHR his treatment protocols fall between the HR and VHR parameters. Basically his plan was more intense than a HR plan but slightly less intense than someone with a VHR plan.
HD MTX stands for high-dose methotrexate. It is a pretty strong chemotherapy drug and requires hospitalization for the 24-hour infusion and elimination process. Each hospital admission is 4 days long. Here's the basic breakdown:
Day 1: port access, IV fluids for 6 hours before HD MTX can start, HD MTX begins and fluid IV continues
Day 2: still infusing HD MTX until 24 hour mark, still receiving fluids, labs drawn at hour 24
Day 3: no more HD MTX, still infusing fluids, labs drawn at hours 42 and 48
Day 4: still infusing fluids, labs drawn at hour 72 (This is the magic draw... if Dempsey is below 0.1 he gets to go home!)

"Fun" facts:
#1: on average, kids will have a level of 30 +/- at their 24 hour lab draw (the requirement is to be below 150)
Dempsey's level this Round was 8.94 at hour 24 and 0.32 at hour 42
Below is a table of Dempsey's levels for each of the four rounds.

Round/ Hr	24	42	48	72
Round 1	23.45	0.27	0.13	0.03
Round 2	42	??	0.22	0.03
Round 3	15.15	0.48	0.15	0.03
Round 4	8.94	0.32	0.16	0.04

#2: some kids can take up to 2 weeks to clear the HD MTX from their systems (this is horrible because that means the drug has been in their body that whole time)
Dempsey has cleared it each Round by hour 72
#3: by this phase, kids have lost most or all of their hair, are losing muscle tone, have a plethora of negative side effects
Dempsey has only had slight nausea thus far (and a TINY bit of vomit... but I blame his blood sugar cycle for that one)

Round 4: Done & Done

Dempsey is done with the round called Interim Matinenance!!

(I kept calling it Delayed Intensification)

We are home!

I will try to finish another post about this phase and each round soon. For now... we're going to enjoy a quiet-ish Saturday and little-to-no social media.

Hooray for family time!

Round 4: Days 2 & 3

Round 4: Day 1 Photos

Pics

Enjoy some photos of life from Kenagyville. Dempsey starts Round 4 of HD MTX tomorrow. Please be in prayer over the end of this phase.