Liver enzymes are normal, 64.
Resuming daily chemo effective tonight- 75% dose.
Resuming Bactrim on the weekends.
Today's drugs include:
Vincristine infusion
day 1 of 5 of Prednisone & Ranitidine
Methotrexate
Mercaptopurine
I hate all of this.
A little stream of consciousness for ya...
I think I'm squarely in a depression session. Nothing sounds good. I still love people but I wish they'd go away. I'm tired of doctors not listening to me. I'm tired of trying to wrap my mind around all the information I need to help my son THRIVE and survive this 3 1/3 yrs of chemical onslaught they call treatment. I'm tired of defending my holistic view of health and wellness DESPITE it's obvious positive impact and protection of Dempsey so far. I just wanna cry. No one ever tells the family members that this is a marathon FIGHT. There is NO WAY to keep enough strength at all times to fight the battles that must be fought. I'm grateful for prayer. I'm grateful for those Amazon boxes that come with blessings because they make me feel loved and they take my focus off this horrendous journey. I'm thankful a friend called me today because I posted my phone number on Facebook and said I was available to chat with anyone. She took my mind off the journey and shared snippets of her life- refreshing. I'm thankful my husband isn't gone for work and is home to partner with me... except I'm so exhausted I just want to slide ALL the responsibilities to his side of the equation. I want to make him handle the drugs because I'm so broken right now. He doesn't even know that just yet. He will. My smiles are forced. My children can tell. When a child doesn't receive my intention correctly I throw my hands up in frustration because it feels like NO ONE knows what it's like to be me. But some people do. I know they do because they post similar sentiments in online groups where they find support and understanding and encouragement from those who get it. I want to crawl into bed and cry myself to sleep, practicing the art of letting it out that I preach to Sawyer when he just feels too much. I want to put pretty things in front of my eyes to remind myself that not all is dark and despairing. I did that a few weeks ago when I plopped in front of my computer and just look through my talented friend's Etsy store aptly named Project Find Joy. I swear I bought all the things. Now I just need to hang the darn things. I will go and thumb through my favorite florist's Instagram account at Twig & Vine Florals, just to see God's beautiful colors painted on flowers that my friend lovingly crafts, creating gorgeous arrangements. Recently I committed myself to ordering the family a second faux fur blanket from my friend's Etsy store called Fur Accents- because Dempsey hogs the one we have now. Stinker. I realize, more and more, that I need to stay away from social media. That's awfully hard, though, because social media has helped ease parts of this journey for us. We have garnered so much support in the way of prayer, tangible blessings, financial support, encouraging messages, etc. It's really hard to think about cutting ties with that. So, I will strategize office hours. That brings me to another thought process: business. I am passionate about sharing our journey with other leukemia families in the hopes of helping them help their leukemia patient THRIVE through treatment, just like Dempsey is doing. I want to share what we do and why. How we got to where we are and which organizations were of great value to us (KICKcancER Movement and MaxLoveProject). As I'm typing my oldest is talking to me about things I'm not particularly interested in, but he is, so I listen and give him the attention I can muster. Uh oh, the other one is out of his detox bath and energized... which means LOUD. I love them so much... I just have a bazillion things running through my mind. Did you notice? All of this is exponentially magnified by the fact that the attending doctor at OPI today questioned me AGAIN about any changes I've made to Dempsey's holistic regimen at home because she knows we "supplement and stuff". Seriously, if I eye roll much more my eyeballs will get stuck looking at the back of their sockets. I'm not the one poisoning the child but I am the one who gets questioned when things don't go right. Um, I was told there are "no whole food restrictions" by his primary ONC. Thus, our NEOLIFE supplements are never a problem. Do not bother arguing with me on this point. I will not engage. I mean, lets take a logical survey of the situation- Dempsey's labs have been normal until he hit this phase (Maintenance) in which he gets chemo DAILY and an extra dollop on Tuesdays. Drugs at a dose his liver cannot process successfully in the time it needs to. Why can't his liver do this? Because it has a genetic mutation that means his liver isn't functioning optimally. But the drs who call the shots for MY CHILD'S treatment don't believe that's a reason for concern. *crossed eyes and cocked head* Regardless of all that, if our at-home regimen were the problem why has Dempsey been sailing through treatment with wonderful-looking labs, no negative side effects, blah blah blah? Yes, prayer is vital... I hope that goes without saying. So, if the ONLY thing that has changed is the amount of drugs my child is getting WHY AREN'T WE QUESTIONING THAT?!?!?! Then, oh-ho-ho theeennnnn, the OPI doctor calls me to say we're resuming chemo tonight at 100% dose. Um no! I explained I had already confirmed a 75% dose with the primary ONC. She stated the two of them spoke and thought 100% would be the better way to go buuuuuuut that if I was set on 75% dose we could do that. Um, yeah, we're going with the 75% dose until I get the results of the NUDT15 test I pushed and paid for!!! Arg! Then she explained the new dosing method... and it's illogical to me. They are literally taking the 25% off the tail end of the week. Say what? Whatever. It's less than what it was and that's a step in the right direction, right? I just need to have a meltdown. So, if you don't see me on Facebook much in the near future, just know that I'm tending to MYSELF as I process all this mess.
Please just pray as the Spirit leads. I have no energy to assess and list all the ways we NEED YOUR PRAYERS.
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