Liver Enzymes Follow Up 3 || Depression I Guess

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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Chemo Infusion & Labs

Dempsey has a chemo infusion this morning. He will also start 5 days of steroids.

He will also have labs drawn.

Please pray over his body. Pray protection over every organ. Pray against negative side effects. Pray for calm nerves and a smooth appointment.

Sawyer cannot go with us because it's flu season and the CDC mandates ONLY PATIENTS and their guardian can be at OPI. So, Sawyer will stay with my folks for a few hours. It makes Dempsey sad when Sawyer isn't there.

Still no news on the NUDT15 test from Philadelphia. 😡

If Dempsey's labs are good he will restart his nightly 6MP chemo pill and weekly MTX at 75% dose (a blessing).

Liver Enzymes Follow Up 3

Yesterday, 1/31/17, Dempsey had MORE labs to follow up on his liver enzymes.

Liver enzymes are still too high at 184.

     They need to be below 175.

          He continues his chemo hold- week 4.

               Now also holding Bactrim on weekends (totally fine with that).

Still no work from CHOP (Children's Hospital of Philadelphia) on the NUDT15 test results. Our CHOC OPI nurse/ doc (not sure which she is- sorry) said they, CHOP, are running slower than usual. Annoying.

The plan to restart his chemo at 75% dose is still in place, assuming his liver enzymes get to the acceptable range. This isn't ideal but it a step in the right direction. We need those NUDT15 reuslts!

I truly believe that this is God's way of protecting Dempsey right now. Our sweet boy has been drug free for almost a month- praise God!! We have been able to focus on detoxing his little, over-taxed body and allow his liver to do what it needs to, how it needs to, as it needs to. Please pray over this organ of his specifically- that it will receive the rest it needs, rejuvinates quickly, and regenerates stronger than before so it can do the work it will have to unlike it ever has before.

Dempsey is STRONG. Dempsey is HAPPY. Dempsey misses the nights in the hospital at CHOC where it was just he and his daddy for the night. That last one makes me cry. Y'all, are baby has been through a form of hell I pray no person ever has to endure and he remembers the good things. Praise God for his protection of our baby's mind- another of your many prayers answered in the most wonderful way.

Meanwhile, Dempsey has (long-since) said good-bye to his therapy trike and said hello to a "normal" bike, with training wheels for now. Enjoy some photos.

We bought the bike from Andrew at the Cyclery Bike Shop in La Mirada on January 27th.

We took the bike for its first out-of-our-neighborhood ride on January 30th at

Wilderness Park in Downey.

For now, there is a whole lot else to report. I am grateful for that fact!

In the works, planning to build a "business" around educating, empowering, encouraging, and providing hope to other leukemia families through speaking engagements and sharing resources and networking. Have NO CLUE how this will work, if it will work, or when it will work... but I think it's necessary and divinely inspired.

PRAY AS YOU FEEL LED, friends. We still need prayer. Every day, all day, we need prayer. We are nowhere near done with this craptastic journey called cancer but we do feel peace, hope, and purpose in it and through it.

Liver Enzymes Follow Up 2

So, yesterday (Tuesday 1/24), Dempsey had follow-up labs AGAIN to check his liver enzymes. He also had a vial drawn for the NUDT15 test I've been pushing for.

Liver enzymes are still too high at 432.
     They need to be less than 175.
          He is still on "chemo hold".
               Follow up labs again on Tuesday, Jan 31.

NUDT15 test sample drawn and paid for- out of our own pockets.
     Will send sample to CHOP (Children's Hospital of Philadelphia).
          We will have results within two weeks (Feb 8).

IF Dempsey's liver enzymes are in the acceptable range (less than 175) next Tuesday (1/31), he will resume his nightly chemo at 75% dose. His primary ONC knows that his dosage is an issue for me and she has graciously agreed to lower his dose until we receive the results of the NUDT15 test. There is a part of me that KNOWS I am right about Dempsey's liver being compromised because of his MTHFR mutation (and various SNPs that I'm still figuring out). However, now that we have had to fork over so much cash (Thank you Mom and Dad for helping with this part!) of our own, there is a small part of me that is worried I'm wasting the money. Stupid, I know... but, alas, welcome to the inner working of my ever-warping brain.

I will also be calling our insurance company again, this time with better verbage to use, to attain the name(s) of those who denied the request for this NUDT15 test and to press them for an answer as to WHY they denied him and on WHAT GROUNDS they denied him. Uphill battle worth fighting! Sword worth falling on! Pray for me to keep a cool head and that the Lord grants me favor.

Here is an image that will help you see what I do... every day. You can call me a lot of things, but uneducated and uninvolved is not among them.

This photo is just a sliver of the evidence out in the world regarding the connection between MTHFR mutations, the drugs MTX & 6MP, and toxicity issues. One or two of the files shown are not so much genetics-based, but still provide information on how to help kiddos in this mess. I want to shout out to and thank other cancer parents who have done this research before me and were willing enough to share their findings/ articles with me. A handful of these links came from those parents. As I read through these studies/ documents my head starts spinning... the letters and numbers all start swimming together after awhile. So, today, I rest... sort of. My brain is on overload and cannot function like I need it to in order to be efficient and productive.

Meanwhile, in the Land of Homeopathy...
I have met an incredible woman named, Britt. She lives on the other side of the country and I am determined to meet her face-to-face one day soon. Anyway, she is studying an area of alternative health that I am now fascinated with. The information she provided has given me a MUCH BETTER, much deeper look into Dempsey's biology. We are implementing another therapy for him over the next 3 days (5 in total) to see if we can help his body even more. I am eager to see what information we get after the 5 days! The therapy involves none of the following: drugs, nutrition, supplements, oils, touch, play, exercise, heat, prayer, sight, smell... Suffice it to say our bodies are incredible and capable of much more than we even realize! God is so good!

I think I might just be headed toward my Doctor of Naturopathy credentials. We'll see where the Lord leads.

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