Happy Birthday, Luke! 

Happy 11th Birthday to our sweet boy! Hard to believe that he is 11 today! Time has just gone so fast. 

At 11, Luke still has an unbelievable imagination, still loves to play outside with his friends, he is a technology junkie (which we have put a hold on), he is growing out of his dairy allergy and still has a tree nut, peanut and egg allergy. His favorite book series is Diary of a Wimpy Kid and he loves all things Country music! He won’t go to sleep at night without saying good night to his sister and is just now starting to understand what is going on with his dad. 

Sometimes I am sad that the majority of his and Carlie’s life has been living with a dad with cancer. I don’t think Luke understood or paid much attention to it until this year. I think now he knows and understands that this disease could take his dad away from us. 

However, both kids have taken this journey in stride. They have faith that their dad will be ok and have embraced the changes that have been forced to happen as a result of James’ travel every other week. I appreciate their strength, flexibility and understanding.

One thing James and I have tried to do is make sure Luke and his sister have as normal of a childhood has possible. I think, overall, we have been successful. 

As we enter Luke’s 11th year, I pray for him to continue to be happy and that his dreams all come true. I know that he has made ours come true just by being born. We are super proud of him, love his spirit and independence and we are so thankful God had allowed us to be his mom and dad! 

We love you to the moon and back, Luker! ❤️

The Exception, Not the Rule (Day 42 part Deux)

Nearly 7 years ago, we were told by James’ first surgeon “that being cancer free or NED (no evidence of disease) was the exception and not the norm.” I have always thought my husband was extraordinary and exceptional and today he proved that being a run of the mill, ordinary patient is over rated! 😂  

I have always thought and continue to think my husband will ultimately be the exception. It’s just taking some time! 😉

Today has been one confusing day. But here is the man of the hour on day 42, infusion numero cuatro! 

Ok, so James’ CPK was 1000 and there was no change in his urinalysis from 2 weeks ago (which is different than what he told me 3 hours ago but that’s what I get for staying home) so they decided to forge ahead with treatment today and monitor him. YAY!! 

I’m sorry but the thought of his dosage being decreased or him being dropped from this trial sends me into a dither. Oy vey!! 

So here is the plan, signed, sealed and delivered

  • get blood work done in MN next week to see if there is any change in his numbers. Lord, let there be a DECREASE in the CPK! 
  • If he has any sign of pain (ie: lower back pain) he is to call and stop taking his chemo immediately. It is the side effect of the chemo that is causing these numbers to elevate but typically patients numbers decrease after a few weeks. 
  • Return in two weeks (end of cycle 2) for more labs and the lovely CT scan!! 

So updated prayer requests – sorry, I am high maintenance today. 

  1. Lower CPK numbers!! HUGE! Most important! 
  2. No back or other muscular pain
  3. Steady, regular heart beats and blood pressure
  4. A scan that shows NO growth
  5. Lower or sustained CA19 levels (not sure if this was checked today and James said the doctor did not mention)

Thanks mi familia for walking this walk with us! 💛

No ordinary man – Day 42

Day 42 has not gone as smoothly as we would have liked. But you gotta take the good with the not ideal, I suppose. 

James traveled to Houston alone this time, so the kids could have some normalcy. It’s good for the kids, likely good for James and kind of heart wrenching for me, as I haven’t missed appointment with him, in nearly 7 years. 

To top it off, his CPK levels were super duper high today. For the past month they have been 470ish (130’s is normal). But my husband is far from normal or ordinary and today those numbers jumped to around 1000. I don’t have an exact number because I am getting my information second hand. 

Just a little side note – High CPK levels in the blood mean there is likely some muscle damage, which is releasing creatine into the blood stream. This isn’t a good thing. James hasn’t done any strenuous exercising, had a heart attack or suffered an injury that would cause these numbers to increase; therefore, the chemo (Cobimetinib) is likely the culprit.  

As a result of the high CPK level he was not immediately cleared for his infusion until a urinalysis was completed. 

The good news with this “bad” (not ideal) development is that James feels good. His blood pressure is good, he isn’t having any pain or weakness. 

The Urinalysis has been returned and his protein levels were a bit elevated and James understood that he was not having treatment today so he headed to Kenny and Ziggy’s for lunch. 18 minutes into his 22 minute drive, the clinic called him to see where he was. After clarifying with Dr. R, James is to have his infusion today and continue the cobimetinib. 

So, “now what” you ask? 

1) He is suppose to continue the Cobimetinib and have blood work, in MN, next week to check his levels and we will go from there. It appears the plan is to continue as is because he does not have any significant daily symptoms of pain or weakness nor is he having any heart issues. 

3) If he has any muscular pain, he is suppose to call Dr. Raghav and discontinue his cobimetinib immediately. 

So prayer request (because I always have them) – please pray for his numbers to go down, substantially! Also, that he continues to be symptom free, in regard to muscle pain, weakness, blood pressure. 

4) I will add his day 42 picture as soon as he sends me a selfie!! 😊

Thank you for your prayers and support! 💛

Fundraiser 

My best girl all the way back from High School has her own business with LuLaRoe. She and a few of her peers have put together a little fundraiser for James to help fund his travel back and forth to Houston every other week. 

This is a fun little fundraiser as you can shop from your computer. The link to the items available can be found here! I personally have never bought LuLaRoe but my mom and sister in law have and they say they are fabulous! 

So, if you are in need of a super cute, comfy dress or some leggings or other items, take a peek! Ginger is available if you have questions. 

Also, LuLaRoe matches dollar for dollar all funds raised after a goal is met. What a fabulous company! 

James, the kids and I honestly do appreciate all of you for your support, whether it’s been financial, mowing our lawn, watching our minions, bringing us food and most importantly, your prayers and good thoughts. 

We honestly could not walk this journey without each and every one of you! 🎗💛

Day 28 – Cycle 2


James has made it through his first cycle! Cycle 2 will also last 28 days. At the end of this cycle he will have a CT Scan to see if this is showing any sign of working. When he comes for his scan the first week of November, his labs will also include his tumor markers, specifically the CA19-9, which was high when last checked. 

Today’s labs were all good, except his CPK. This is the test that monitors whether his muscles are being attacked. You may recall that two weeks ago, his CPK doubled. Today, the number remains the same; however, they would have expected it to decrease. Of course, James has to be different. 

However, it is not high enough to change the dosage of his cobimetinib (chemo)….yet.  If it remains high next time, they may need to adjust the chemo dosage. In the meantime, we will monitor his creatine intake and keep our fingers crossed for next time. Luckily, he does not have signs of muscle breakdown, such as pain, so that’s a plus. 

Oh, his echocardiogram and his ophthalmology appointment were both good too. So far no damage to his heart or his eyes. 

This was his off week from chemo so he has felt really good. Minimal fatigue and a healthy appetite. He gained a pound this past two weeks, which would not be a surprise if you saw his dinner and dessert the other night. 

They are starting to get results from others but can’t share them because it’s a trial and I have yet to have anyone respond to me who is on this trial to see how they are feeling, etc… 

So here he is… day 28, infusion 3, the beginning of cycle 2. 

Of course, I have specific prayer requests… (thank you for humoring me) 

1) James really needs this CPK number to decrease. If it decreases, he can continue on the current dosage of chemo, which is recommended for this trial. So pray for some muscle sparing the next two weeks and going forward. 

2) That his minimal rash goes away. You wouldn’t notice it but he can feel it. 

3) I know it is 28 days away, but that his tumor markers decrease and his scan remains stable or shows a change (preferably reduction in tumor size not increase) 

4) Finally, prayers for the other 19 people on this trial and that it is working for them. It would be lovely if they all had good results so this could become an active, reasonable treatment for PMP patients. Maybe then, James could get it at home, as traveling here takes it toll on all of us. 

As always, thank you for your support! 🎗

Day 22

I need to think of new titles, the counting of days is beginning to feel kinda odd, like a thriller movie or something. 

Day 22 is a good day. It’s James’ first full day without a chemo pill! Woohoo 🙌🏻! He is officially on his 7 days of (chemo) rest! It will be interesting to see if his energy level boosts up to normal this week. He has been immensely blessed with no painful facial rash, but did notice a sign of something on his foot. Not sure what it is but I am treating it as a side effect and making sure he uses his medication cream. We’ll see if it progresses into something bigger. 

This has been a good week, so far! I absolutely love these “off” weeks where we are home together, sticking to our sense of normal. I am sure I used to take these for granted but now I treasure every day we are here and not in Houston. 

Some good news, we have James’ schedule through the end of the year. That will make travel a bit less stressful and a heck of a lot cheaper. 

As we head into his week 4, please pray for our safe travels on Saturday through Tuesday night. Also, James is having a biopsy again on Monday, so pray for that to be uneventful. He had some minor issues last time so it would be nice to avoid them altogether. Also, that his labs are within normal limits so he can get his third infusion. 

Thank you for your prayers and continued support! It’s nice to know we are not alone.