What Now?

At Dempsey's Thursday appointment I was able to speak with his primary oncologist. She had me reiterate the details of Wednesday's hives (allergic reaction). I told her what I shared in a previous post. She said "We won't give him the last injection (Friday)." She said, she feels confident he got "enough" of the asparaginase (drug) that we don't need to try and get the last dose in him.

Basically Dempsey has had THREE rounds of asparaginase. #1 PEG in Induction (April), #2 PEG in June (severe allergic reaction), #3 These last two weeks of 1 infusion and 4 injections (5/6 of the dose).

She had him remain accessed (needle in chest) one more day so we could come back and have labs drawn. Why labs? Well, if you draw blood between 48-72 hours after the last administration of the drug, you can send it to a lab back east where they will analyze the sample and see what level of drug is in his body. She is looking to see if the antibody Dempsey's body has (which causes the reactions as it attacks the drug) is successfully suppressing the asparaginase or if it is trying with limited success and the drug levels remain high enough in his body.

I HATE ALL OF THIS.

So, he had his blood drawn yesterday. Little Trooper even helped the nurse fill the lab vials with the blood she drew. What a pro! The vials will be FedExed Monday and we probably will know something by July 18th- he has an appointment that day.

The results of this test will help his oncologist decide what the next phase of his "road map" aka treatment will look like. We are all trying to just be PRESENT and enjoy all the good and wonderful moments leading up to the news.

My gut has had the feeling for several months that Dempsey's journey will take him down the bone marrow transplant route. NOTHING has been said about that at this point.... just a feeling in my gut. I have a friend in Wisconsin whose daughter ended up allergic to both asparaginase options and she still cleared treatment and is deemed "cancer free". Our oncologist said that without this "crucial part of treatment" the chance for relapse is higher. We serve and worship a BIG and POWERFUL God. We are trying so hard to hold onto HOPE... but, quite honestly, it is hard to do right now. It doesn't matter how many good days/ moments you have between torture sessions... there is always residual pain from the torture itself. It's not always physical pain either. Emotional, psychological, spiritual. All carry their own baggage moving forward.

Silver lining? Because there always is one... Dempsey probably won't get this strong drug during treatment any more. That is one less toxin being put in his body which gives us that much more (albeit a TINY amount) time/ space/ opportunity to help his body defend itself with nutrition and natural methods. We MUST build his immune system up so high that it crushes the leukemia on its own. That is VICTORY! Pray for that!! Pray that we can help Dempsey's body figure out what inside communication turned off, went wrong, and fix it. Our bodies are amazing! Our Creator is amazing! Our bodies were made to fix/ heal themselves! We just need to give them the right tools to do so.

This is where I bring up The Pledge again. WE NEED YOU!!! Like, in a big way. In order for us to help Dempsey's body fight like it needs to, he needs nutritionals- lots of nutritionals. The money or items you Pledge will help us do just that. I pray that we will defy the odds of medicine and blow the medical professionals minds with how well Dempsey does and how his body beats leukemia!! Please join us in praying for this reality in Dempsey's life.

Dempsey's schedule for the rest of July, as it stands today:

July 11th: infusion of vincrisitne

July 18th: infusion of vincristine

July 25th: bone marrow biopsy (start praying now, please!)

Prayer requests:

There are so many...

Miraculous healing, physical restoration, physiological protection, emotional protection, mental protection, physical rest, joy, peace, all fruits of the Spirit, grace, acceptance, fight, etc, etc, etc. As always, pray as you feel led.

WAYS TO HELP/ SUPPORT

The Pledge    PayPal    Meal Train    Amazon    Farm Fresh to You

Recent Photos

Stomach On Its Head

That moment when you call your cancer-fighting son into the bathroom to get in his detox bath and you notice hives. That's the moment your stomach hits the floor and starts convulsing. You hold it together on the outside because you just can not let them know anything is wrong. You get them situated and quickly jump online to find the side effects of the drugs that were just pumped or injected into him hours before.

Sure enough, "hives" is a side effect. Now you know you MUST call the after hours phone number that you were drilled about and even forced to sign your freedoms over on one the millions of papers you've had to sign. So, they KNOW you know you must call this number. But that means we'll be sent immediately CHOC... right? Turns out, no. No we do not need to push the boundaries of lawlessness to get our child into the CHOC ER. We need to give him Benadryl and watch him.

Thankfully I had already monitored his breathing, checked his temp, and observed a happy, energetic, playful Dempsey. Granted, his injection site is aching more than it has but this is the third time that thigh has had a needle stabbed into it releasing toxic chemical into his fragile body... so... yeah... I would be aching too!

In all other respects, besides the hives, he is "fine". I can here him messing with Sawyer, mimicking Wreck it Ralph (Qbert), messing around with me during oil time, etc. All happy as a clam. Praise God.

My nerves? Oh, I have them! I can feel where every single one of them begin and end. Some of them are even in a mosh pit at the party Adrenaline is throwing... without my permission, nonetheless.

I hate this feeling. The feeling of being drugged without your consent by your very own body because of the love for your sick offspring. The feeling of helplessness. The feelings of fear and panic. All these feelings, moshing around inside me. I've never wanted to be an ostrich as much as I do now... since the cancer word entered our lives. I just want to stick my head in the sand.

So, please forgive me when I'm a tad bitter that life is "normal" for you. That your entire family is "healthy". That you get to go on vacation "as planned". That you get to celebrate your child's birthday with your WHOLE extended family in a PUBLIC place with not a thought about germs or crowd control. Seriously, please forgive me. Most days I am happy, elated even, that life is going as it should be for you. But there are days... moments... like today/ tonight where jealousy takes over and shoots off a canon of bitterness over every social media post, photo, normal experience y'all are having while we are... not.

Sawyer was saying good night to me just now. As I pulled him in for a tighter hug, I had to hold back tears. He's "healthy" and his world is made so much smaller because Dempsey has cancer. Sawyer is an extrovert and is forced into introvert living. I look at him and sense his soul changing. I'm so afraid I'm failing him. But what can I do? It's super hard on Dempsey to see Sawyer go off with friends. That makes it harder on Sawyer to go. But he needs to go. The space and separation from Dempsey is good for him and the experience with friends is good for him. But Dempsey is left at home, sad. When Dempsey does get to see friends it's in a super-controlled environment, for a short amount of time, with a prep session for the friends about him being "accessed"... if he is at the time.

It's exhausting. Trying to balance everything. It's no wonder people throw their hands up, curse, and just blindly walk the cancer journey that the "professionals" have deemed "best". I just can't be that person. I will not let this cancer hold any part of Dempsey ransom!! He is worth more than the "best" medicine has to offer. He deserves to THRIVE through cancer and his childhood. He deserves to not worry about a secondary cancer popping up like an unwelcome, unwanted weed in his garden of life! That is why I'm exhausted... because it is constant work and worry making sure he is taken care of.

Of course I've considered whether or not lunch at a restaurant was a possible cause. I've considered the fact that I didn't get much aloe vera juice in him yesterday as a cause. I've considered all my short-comings as a possible cause. I KNOW it's the drugs!!! I KNOW they did this to him. I know this will happen to him again. People tell me it's going to get worse too. Dear Lord... worse? How do function when that happens?

Totally unrelated but adding to my anxiety is the fact that husband missed out on an all-staff meeting, lunch, and photo op because this mommy just cannot handle watching Dempsey get injected with poison. Infused is a little different... there's no added trauma. Still poisons but less physical trauma. It's the trauma part that is a wall for me. Guilt. Oh the guilt.

PLEASE JUST PRAY AS YOU FEEL LED. I have no strength to list all the ways we need prayer. God knows it all. I rest in that for this part of the post.

Pixelated