Hello from a whirlwind week!
Also, it’s been SEVEN months since we started this journey and little Mama is just rocking her health. Thank you, Jesus.
I flew in last Tuesday morning, a week ago, to meet mom at SeaTac before we headed to round 13 of low dose metronomic chemotherapy with Dr Naixi (Nick) Chen at Seattle Integrative Cancer Care Center. My last update was 9 weeks ago, and there has been a whole lot of change in those weeks.
Let’s cut to the chase, I’m not the flowery blogger. I’m a passionate, type A, perfectionist, and kindly aggressive daughter (super thankful for those gifts in this season). We have switched to a new oncologist. Mom starts Wednesday, tomorrow, with Dr. Ben Chue at Lifespring Cancer Center where people seem to be the focus.
The reason for the change, you ask?
First, let me say, that Dr. Chen was great for a season. It got us off full-dose chemotherapy and out of conventional medicine. It got us the referral to Dr. Parmar and the initiation of hyperthermia with high dose Vitamin C, Mistletoe and monthly fever therapy. It started the process of Guardant 360 testing and the Merck assistance program approval of Keytruda, PD1 immunotherapy, coverage for a year. All things I am entirely grateful for. They were a bridge out of a situation we were desperate to leave. And, the patients were incredible. My mom made friends and had so much hope from those around her.
Dr. Chen, who was mentored by our newest oncologist, Dr. Chue. They are the ONLY two providers of low-dose metronomic chemo in this entire region of the nation. I believe the next closest option is California. Please fly in for treatment, weekly.
But the reasons we left Dr. Chen –
- Lack of communication. Delayed feedback on test results.
- Offers of info on clinical trials and HLA typing with no follow through. High staff turnover which led to poor communication between the team.
- Feeling like a number.
- Delayed followup with the Doctor and NP.
- We waited 7 weeks to hear back on testing.
- We were billed incorrectly.
- Four people seemed to be the only ones who really knew what was going on. Thank you Elaine, and Kim and Sue and Bri. You did so much damage control!
- And, the final push – showing up to treatment to be told “you have finished your treatment here, we don’t have an appointment for you, and that’s because you didn’t checkout last week”. As my mom was bawling, the doctor walked by, without even a glance in her direction.
Oh hell no; check please!
God works in mysterious ways, though. We already had an appointment to meet Dr. Chue at this point, due to my mom’s encounter with a woman who was his patient. Although we had heard good things, that direct experience meant a lot. And, luckily I wasn’t at Chen’s the day of “the final fiasco” because clearly, I would be in jail for no less than arson. 🙂 I am continually grateful for the amazing team of drivers and support systems that mama has here. I wouldn’t be as-sane without them.
And, answered prayers continue – we have funds to continue the out of pocket treatment in Canada, Mom’s weight has balanced between 104-107 and her pain remains reduced. Her energy levels have improved, her leg pain is gone, and she’s been walking almost daily. Everyone says she’s glowing, and I can’t deny it. She seems to be stronger and healthier than this summer. Praise, Him!
We had a follow up CT in September that showed no further growth and some decrease of her liver lesions. Which is a huge success for a rapidly spreading cancer. And, her CA-19 cancer values have continued to drop to an all-time low of 14K (at their highest, 38K).
And she completed fever!
Now that mom has been doing treatment with the amazing Dr. Parmar in White Rock, B.C. every week, she also completed the monthly recommended fever treatment. Once in August and once in September.
They use the Heckle HT3000 which up-regulates the immune function of the body’s healthy cells to fight off cancer. The treatment itself is a 5 hour process, heating the body temperature well above what a sauna could ever do, but the results are incredible. The process? Super uncomfortable. Not only does she feel “bright and bushy tailed” the days to follow, but we saw a huge drop in her tumor markers from this.
Yes, the treatment is $900 per session, but it’s worth it to us. As always, there is a link for donationns here, but please remember that a card, a hug and a meal, do just as much for her. GoFundMe
So, what is her Treatment Schedule?
Danise continues on a 7 day rotation of chemo therapy. Dr. Chue changes the regimen to prevent cancer resistance every 6 weeks. That’s right, cancer is very smart.
Now, every Tuesday she will do a lab draw at LabCorp in Mount Vernon. And she will have chemotherapy every Wednesday in Seattle everyWednesday from 8A-3P. Every Thursday we will do IV therapy/hyperthermia with Dr. Parmar.
We have transportation covered through November 10th, which is a triumph in itself because people are so dang busy. Also, Jeff has a new job that allows him a reverse Summer Break; he is off November 10th to February 10th. This new schedule will allow him to drive mom to her appointments. We’re excited for them to have this easier routine over the Fall. And, they get to visit
me in Dallas for a week. God knows we all need a break from the cancer talk sometimes.
I’m adding a few photos of some really joyful times that have reminded me that the clock is ticking slower than I think and that God remembers we are humans and not numbers. My next update will likely be again, too long, but don’t hesitate to reach out. Communication and community is so powerful. And, mama is back to walking and would love to do so in the beautiful Fall weather, with YOU!
Life moves so fast right now. It’s very hard to keep everyone updated. Note: I keep a weekly Mama update on Instagram, I just have to add you to close friends.
At the end of the day, the plan is His plan. And, your prayers, mean the most. Everyone who calls on the name of the Lord will be saved – Romans 10:13.