Photo Drop

New Year's Sentiments

Follow Up- Liver Enzymes

Got the follow-up call today from CHOC. The lovely NP (I think she's an NP... I hope I'm not totally demoting her.) told me the following:

1. The NUDT15 test has been denied by insurance because, hold on to your hats, Dempsey is caucasian. Yep. See, this test is typically run for other ethnicities because those are the ones with the "higher statistics" of what this test reveals.
   Okay, fine... but what if my son is one of the "few"... the "minority" who also have these genetic issues? Honestly, there is a fear that we're going to spend the $650 for the test and it shows my assumption is wrong. *gasp* Regardless, I need to know more information and that test is ONE WAY I can get more information to protect my baby better.
   
2. If Dempsey's liver enzyme count goes down to the acceptable range (less than 175, I think) then his primary ONC has agreed to re-challenge him at 75% the standard dose. This is a decrease of 25% making his 6MP dose 37mg M-F and 56.25 S-S while his MTX dose would drop to 11mg. We would keep him at a 75% dose until the results of the test come back which would tell us A. he is okay to resume 100% dose and be monitored or B. he needs to drop the % farther because his liver cannot handle a full dose.
   Please be in prayer over this. Currently, I feel okay with this.
   
3. The anesthesiologist who thinks I should lecture/ speak at Grand Rounds will email me more information about that program. So, I wait, but at least I know what the program is called.

So, what's the plan?

I will be contacting the insurance company to obtain the names of those on the board who denied my boy the test. I might wait until the results of the test or in... or maybe not. I'm praying over my next move(s).

Dempsey gets a break from pill taking until at least next Tuesday, maybe longer if his enzymes are still too high.

I am beginning to pray and seek God's guidance about Grand Rounds- speaking to a medical and non-medical audience. "I" want there to be education, empowerment, and a little bit of finger shaking. But above all I want the Holy Spirit to guide my words, posture, and whole being when I speak to whatever audience he brings me to! So, that means I need to pray more. ;-)

So, there's the recap. Thank you for following along and covering it in prayer. Your support is priceless.

A few tangible ways to love and support us: PayPal || YouCaring || Amazon

Liver Enzymes

Finally got the call from CHOC telling us about Dempsey's labs from this morning. What's the word?

Liver enzymes at 1,500.

Not good.

What does that mean? Well, it means he is on "chemo hold" until labs are drawn and run next Tuesday. If his counts are still higher than 5x normal (45) then protocol dictates that they cut the dose of chemo being given. If his counts are less than 5x normal (want them at or below 175) then protocol dictates they "re-challenge" his body at full dose of 6MP (50mg M-F and 75mg S-S) and MTX (15mg weekly on Tuesdays). If he received full dose and his liver enzymes elevate like this again, then protocol dictates that they would cut the dose to 50% and titrate up until at full dose again.

Now, what does this mean for this mama? It means that I WILL be demanding the NUDT15 genetic test be done for Dempsey, even if we have to pay the $650 out of pocket for the test. This test holds answers we need because right now this issue is like Schrodinger's cat.
It also means:

• I need to juice some items for Dempsey
• Start castor oil packs (castor oil rubbed over liver, covered with a soft cloth, and resting on a heating pad of sorts) to help Dempsey's liver detox
• Increase the usage of certain essential oils
• Increase nutrients to help liver function

I would be more worried if Dempsey's bilirubin count was high but it's not, it's normal. Bilirubin presence can indicate the liver starting to fail. Increased liver enzymes mean the liver is being overworked/ taxed. The only complaint Dempsey has occasionally is a slight back ache... which isn't really his "back" but his liver reaching out to nearby nerves to signal "SOS". Now that I know his liver is being taxed, his lower back pain makes total sense. <<--HOLISTIC VIEW OF A PERSON

The call from the NP (I think she's a NP) went well. I really like her. She informed me that she was aware of the situation with the NUDT15 test and will speak to our primary ONC tomorrow. She will also check with a previous anesthesiologist about parent conferences (or something like that) where I could potentially give a lecture or share what I'm learning through this journey and applying to Dempsey. I don't know where this will lead but I don't think it was by accident that he mentioned this to me.

So, pray as before. Pray as you feel led. I'm too tired to try and list out all the different things that need prayer right now. Lord knows and the Holy Spirit is on it already. I rest in that.

Jan 15th Update

So, last Tuesday he had another lumbar puncture and infusion of vincristine. They also drew labs. His labs came back showing his liver enzymes were 40x higher than they should be (they should be around 45). This is not good! To me, this proves what I have been saying for weeks- that his MTHFR mutation requires him to have a lesser dose of methotrexate. The doctors and insurance STILL HAVE NOT ORDERED THE NUDT15 TEST I REQUESTED. Why? "Because it's not 'medically necessary'." Um, it's flippin' necessary because I SAY IT'S NECESSARY! It's necessary because if you don't do the test and your first test was actually a false negative the dose you're giving my son is TOXIC AND DANGEROUS (beyond the normal amount of toxic and dangerous).

Regardless, Dempsey's liver enzymes are too high. He, thankfully, is showing NO SYMPTOMS that this is problematic- praise God. Want to know what's even more crazy? I was gently accused (okay, maybe they were just doing their due diligence) of being the cause for his liver acting this way. SAY WHAT?!?!?! I'm the one protecting his little body from the toxic onslaught the doctors are providing. He has had NO concerning labs before... why is it me now? The doctor told me "I know you do alternative things... supplements and oils... have you done anything different?" Nope. Jackass. But I'm gonna have to do something different now to PROTECT HIS LIVER until they can get their heads out of their butts and order the darn test he needs!

Seriously! What the hell is wrong with our doctors and their ridiculous system?! Why can't they see that something needs to be looked at further? Why are they accusing me when he's not had questionable labs before. When I know more than 5 families who have had false-negative test results, I don't trust the test the docs are using. Just because my son is caucasian, that doesn't mean he doesn't have the same issues as these other non-caucasian patients I know!!! Just because "statistically speaking" my son doesn't fall into the majority category regarding this issues, doesn't mean he doesn't belong or that there isn't something in him worth checking into. I HATE INSURANCE COMPANIES!!! Last time I checked, insurance companies didn't go to medical school YET they are the ones dictating what doctors can and cannot do?? Man, money is powerful!

Please pray over this situation. Pray that the Lord will open doors all while continuing to protect Dempsey's body. Pray for wisdom and right words. Pray for teachable doctors. Pray for humble attitudes. Pray for an increased awareness for the medical community. Pray that the Lord uses our family to bring about massive changes that will protect and aid future patients/ families. Pray for this situation as you feel led.

Grateful & Still Needy

The "Grateful" Part:

Dearest supporters... thank you! Thank you for your faithfulness to our family during this trying season. Thank you for your prayers, every single one is heard and answered. Thank you for your tangible blessings, they help us keep life moving forward. Thank you for your monetary gifts, we could NOT do this without them. Thank you for sharing our story, it garners us more prayers and opens doors for us to bring HOPE to others. Thank you for your encouragement, it helps us take our next steps and next breaths. Thank you for your offers, even though we do not accept each one the thought and heart behind the offer is never lost on us. THANK YOU for willingly walking this journey with us. The Lord is surely using each and every one of you.

The "Still Needy" Part:

Dempsey has ANOTHER lumbar puncture tomorrow morning. He cannot eat after midnight tonight. He will have a needle in his spine, again, with an injection of chemo into his cerebral spinal fluid. He needs your prayers! I truly believe your prayers, along with ours, are what protect Dempsey from all the potential crazy of this journey.

Yes, he typically sails through these procedures. However, there is fear and worry EVERY SINGLE TIME. It never gets easier watching them knock him out and then waiting as he comes to again. No child should ever have to endure such things! Ever!

Our baby needs your prayers. More of them. All the time. Every day. For everything I've ever listed. I am a desperate mama here, folks. Fear is real. Trauma is real. Stress is real. Anxiety is real. Anger is real. Your prayers help me (us) find the HOPE, the JOY, the Lord's FAITHFULNESS, God's BLESSINGS. We need that.

We still need to raise $15,000. This is embarassing. It's demoralizing to need so much help for so long. We will need another $30,000 on top of that before this journey is over. That's insane! For every cent that is given I feel the Lord's fingerprints imprinting on my life and simultaneously feel my ego take a hit. I know the latter is supposed to be a good thing... a sanctifying thing... and it is. It also HURTS like the dickens. It's painful to be laid so bare before you all but I do it because my baby needs your help more than I need to keep my pride.

For those of you who are leary of PayPal or have had issues trying to donate to Dempsey this way, I created a YouCaring fundraiser. Keep in mind, PayPal takes NOTHING if you select "friends and family" while YouCaring takes about 3% (via WePay). Either route you choose, we are so thankful you chose- period.