A Little About This Week

So, the last post was all about me being "super raw" emotionally, and I was. Still am in a way. The difference between then and now is I've experienced the new drug with Dempsey.

Monday was a hellishly long day. Dempsey and Jake left the house around 7:20am and I didn't bring Dempsey (and Sawyer) home until 5:30pm. Too long! The majority of that time Dempsey was hooked up to his "tubies" and his "power tower" getting his drugs infused into his little body. No reactions- praise God! The most noticeable effect, perhaps, was sleepiness toward the end of his LONG day. That may or may not have been a response to the new drug. It could have been a blood sugar issue just with being away from "normal" routine for the day. He fell asleep on the drive home and slept for awhile... which meant he didn't go to bed until almost midnight. Thankfully, Jake had taken a nap and was able to stay up with him.

Tuesday Jake took Dempsey to his infusion appointment. It was a much shorter appointment and went smoothly. Why didn't I take Dempsey? Well, I was handling Sawyer's doctor's appointment. Why did Sawyer have a doctor appointment? He has an outer ear infection, early stages, that I AM NOT IN THE MOOD TO MONITOR. I needed to know the extent of this issue. We got drops for his ear and will continue to use our essential oils externally around his ear. Also, he has a rash. It was noticeable as of Monday. Looked like chicken pox but wasn't itchy and wasn't spreading... so, I knew it wasn't chicken pox. Doctor said it looked like "dermatitis". Can you be more vague? The fact that she wasn't concerned about it was nice but I wish there was a little more conclusive diagnosis. So, we'll keep oiling up with a combo of: lemon, oregano, Protective Blend (OnGuard), melaleuca, and coconut oil... to cover ALL the bases- bacterial, fungal, viral, etc.

I am so grateful that Jake is the kind of father/ husband/ man who makes his family his priority. His wife, that's me, has limits. Dammit. I am learning to recognize those limits and pass the baton in an effort to avoid emotional upheaval or catastrophe. If I push myself beyond my limits bad things happen and I will not be able to be the wife/ mother I need to be. So, I lean into the all-too-foreign-to-me wiring of my male counterpart. Although I do not understand how someone can compartmentalize as he does or literally be thinking "nothing"... I am super grateful for those traits when it comes to walking through a tragic valley. Jake is able to deal (?), handle (?), accept (?) the reality, even an ugly one, and walk steadily through it. Me? I might be okay in the short term but man, oh man, would I be sloppin' emotions all over the place like an irrational tsunami. Not ideal for such a time as this.

Today brings more need and opportunity for Jake to step up BIG TIME and handle Dempsey's appointment. More infusion and an injection. I get the shakes just typing that. We were faced with a tough decision regarding this new chemotherapy drug- Erwinia. I can be infused for all doses and that means an every-other-day infusion over 2 hours with a 1 hour observation and 2 hours post hydration... not to mention the other drugs he would also need to have infused. That makes for REALLY LONG days away from home. Plus, when you infuse Erwinia you have an increased risk for ammonia toxicity (and it is not standard practice to check the patient's ammonia levels!). Doctors say that when it's injected the ammonia release is little to none, although with the injection comes pain. In my deep desire to keep Dempsey from more trauma, I railed against injections. I consulted with a friend whose daughter had each dose infused. This same child nearly hit a coma because her ammonia levels were that high and NO ONE was checking! Weighing the pros and cons... I finally just told Jake "I'm letting you make this choice." I just couldn't settle on one method and time is a key factor. So, with the injections comes a limit reached for me. Jake knows this and accepts this. He is managing his job responsibilities and his family responsibilities marvelously and with grace. I know this is taking a toll on him, but he has yet to complain. So, I ask you to pray for him.

Thursday are more infusions but, I think, also brings a de-access of his port. (needle out of his chest)
Friday is another injection.
Saturday and Sunday WE'RE FREE of drugs and will REST!!

Next week looks exactly like this week... with the exception of maybe 3 injections instead of 2 and 1 infusion of the Erwinia.
Monday: accessing port, infusions, injection
Tuesday: infusions
Wednesday: infusions, injection
Thursday: infusions, de-access of port
Friday: injection
Saturday/ Sunday: FREEDOM
Then we have at least one week, maybe two, off of treatment so we can focus solely on self-care for Dempsey and continuing to strengthen his body through nutrition, detox, oils, and activity.

Prayer requests:
Pray for miraculous healing
Pray for zero side effects
Pray for effective treatment with NO damage to Dempsey's body
Pray protection over EVERY SINGLE PART OF DEMPSEY'S BODY (his organs are in danger from this treatment)
Pray against pain
Pray against complications/ allergic reactions, etc
Pray for wisdom
Pray for calm nerves
Pray for selective amnesia regarding pain
Pray for Jake's Daddy-heart
Pray for my sanity
Pray for Sawyer's Brother-heart
Pray that we will feel peace with our choices (I hope hindsight will reveal we made all the right choices for Dempsey's treatment)
Pray for restorative rest (sleep is illusive for me)
Pray for normalcy as much as possible
Pray for joy despite despair
Pray against worry and fear
Pray for our support network, it is vital to our surviving this journey and navigating it with grace
Pray for things we can't see or think of
Pray as you feel led

Praises:
Side effects have been minimal to non-existent
Dempsey seems to be thriving during treatment (best we can hope for given the current medical model and legal limitations)
Dempsey sleeps well
Dempsey laughs
Dempsey is strong
Dempsey is increasing in strength with his trike
Dempsey enjoys being outside and active
Dempsey can run again, almost as well as pre-leukemia
Dempsey's story is touching MANY lives and planting seeds
We have tools to help Dempsey thrive
Dempsey and Sawyer are strong together and still bonding like normal brothers
Dempsey handles treatment like a CHAMP
Dempsey prays for his appointments at dinner (even the hard ones)
Dempsey brings smiles and joy to his medical staff
Dempsey is not defeated
Dempsey bounces back FAST and with enthusiasm
God is faithful and with us, even if we can't see Him or feel Him