Facing Mesothelioma One Journal Entry at a Time: Part Eight

Tara DeAugustinis

Tara DeAugustinis has been battling pleural mesothelioma since diagnosed in early 2016 at the age of 45. She and her husband, Rich, have maintained a personal website documenting her journey with the disease via journal entries, and they have decided to share their story with the mesothelioma community. To read part seven of this story, click here.

Entering a New Phase
Journal entry by Rich DeAugustinis — 12/22/2016

Earlier this week, Tara and I met with her doctors at Winship Cancer Institute to review the results of her latest PET scan. The headline is that we received a mixed bag of results. The radiation did eliminate some areas of the remaining cancer, but did not impact others. There are also a couple new areas that bear watching in the months ahead. The vast majority of the cancer is gone, but we know that there is still some left inside Tara. While this is not the news we were hoping for and it is hard for us to understand, we know that God is good and He has a plan for Tara’s life . . . “plans to prosper you and not harm you, plans to give you hope and a future” (Jeremiah 29:11). We hold onto these promises. However, if you also read Jeremiah 29:10, you will be reminded that the Lord also allowed the Israelites to be under Babylonia control for 70 years. This was a period of great suffering, just like Tara’s current suffering. We will continue to seek Jesus as our source of strength and fight the mesothelioma. Tara has cancer; it does not have her!

Complicating matters, Tara has contracted bronchitis, giving her a chronic cough and difficulty breathing. She is on medication, which hopefully will address it quickly before our trip to New York. Please pray for quick healing from the bronchitis so she can be as strong as possible for our trip next week.

We are headed to NYC on Christmas morning, and have plans to see the city, eat some good food and see a few shows while we are there during the Christmas season. We are really looking forward to it. In addition, next Wednesday morning, we will start “phase 4” in the “Cancer Removal Project Plan”, as Tara calls it. We will be meeting with Dr. Marjorie Zauderer and team at Memorial Sloan Kettering Cancer Center (MSKCC) in Manhattan. Dr. Zauderer is MSKCC’s leading expert on mesothelioma, and is orchestrating several leading edge clinical trials for mesothelioma patients. MSKCC has all of Tara’s medical records, including pieces of her tumor so that they can do their own research. It is a “God thing” that we have an appointment with Dr. Zauderer and know that God has opened every door along this journey to bring us to the best doctors. While we don’t know exactly what is in store for Tara at MSKCC, we believe that the most promising alternative is an immunotherapy approach called “CAR T-Cell Therapy”. Very simply, it’s an experimental therapy that reprograms and reboots the immune system to specifically recognize and kill the cancer in Tara — HER cancer — and keep doing so on an ongoing basis. I will share more on the plan after the visit to MSKCC, probably early in the new year.

In the meantime, please keep the prayers coming:

– For the bronchitis to go away quickly
– For Tara’s continued healing from surgery and radiation
– For strength, endurance, comfort and relief from pain as Tara continues to recover in the weeks and months ahead
– For our family to continue to love and support each other through this journey, in and by His strength
– For God to continue to use this journey as a mighty testimony for others, engaging the hearts and minds with His gospel truth
– For us to continue to rest in His peace that transcends understanding, without fear or anxiety about the future

We will continue to keep our eyes above the waves, on Him, resting in his peace. Your prayers help us do so. Thank you for all of your love and support! God bless!

— Rich

You Call Me Out Upon the Waters
Journal entry by Rich DeAugustinis — 1/19/2017

We thought it was time to share an update on the latest with Tara. First, she is doing and feeling better. Before Christmas, she had come down with a very bad cough, which we believe was bronchitis or something similar. She has had some ups and downs dealing with it in recent weeks, but over the last few days she has significantly improved since being put on a stronger antibiotic. We are hoping that it gives the cough the boot for good.

This past Monday, Tara and I were back in New York City at the Memorial Sloan Kettering Cancer Center (MSKCC). The purpose of the visit was to begin the process to enroll Tara in a clinical trial. Assuming she is approved (likely), she will begin the clinical trial next Wednesday. But I am getting ahead of myself… let me catch you up.

The week after Christmas, we had our first visit to MSKCC and Dr. Zauderer. We are confident that we are in the right hands, as she is one of the foremost mesothelioma doctors and researchers east of the Mississippi. We learned that Tara’s meso tumors reflect a couple key genetic mutations. While I won’t bore you with the details, this is key because it provides a roadmap for experimental treatments (clinical trials) that we hope will help control her cancer. Dr. Zauderer recommended several strategies and specific clinical trials to us. Over the last few weeks we have been deliberating on the way forward, and it’s clear that God is orchestrating the path towards a trial at MSKCC using tazemetostat. It is a small molecule protein inhibitor which should disrupt the BAP1 genetic mutation in Tara’s cancer. It is an oral drug she will take a couple times a day. You can read more about the clinical trial here: http://epizymeclinicaltrials.com/mesothelioma/

The trial will mean a lot of travel for Tara for the rest of this year. She has to be at MSKCC in New York weekly for the first month, then every 3 weeks for the next 4-5 months and every 6 weeks thereafter until the trial ends later this year.

So we find ourselves at a new place in this journey… A few months ago I talked about the Hillsong United song “Oceans”, and how much it has meant to me through this process. The song alludes to Matthew 14:22-33 in the Bible, where Peter is called out by Jesus to walk on the water. I feel like we are Peter standing in the boat right now, being commanded to come to Jesus on the water. As the song goes:

“You call me out upon the waters,
The great unknown where my feet may fail,
And there I find you in the mystery,
In oceans deep,
My faith will stand.”

He has led us to the right doctors and care every step of this process. He has been with us every step of the way, even through all of the physical and emotional pain and suffering. We are heading into the great unknown with this clinical trial, and must – no, will – put our faith in Him as we step out of the boat and onto the water. Our faith in Him, who he is, what he’s done for us, and what he can do – will stand. We will continue to pray fervently for healing and restoration of Tara’s health, but also that God will continue to use Tara’s journey to engage the hearts and minds of others. Jesus said “Take heart; it is I. Do not be afraid.” (Matt 14:27) and later “O you of little faith, why did you doubt?” (Matt 14:31). As we step out in faith, we ask for your prayers:

– To remove all fear of what the future holds
– To help us to put our hope and faith fully in Him, confident in whatever providence brings in the weeks and months ahead
– That the clinical trial has its full intended effect quickly, halting the mesothelioma in its tracks
– For Tara to continue to recover and strengthen
– For physical, emotional and spiritual strength for Aubrey and me to continue supporting and caring for Tara
– That God would continue to use Tara’s journey as salt and light in the lives of others, inspiring them to belief and faith in Him

As always, we will continue to keep our eyes above the waves, on Him, resting in his peace. Your prayers help us do so. Thank you for all of your love and support! God bless!

— Rich

PS, we will be opening up the meal train again very soon (probably 1-2 dinners a week). It has been an incredible blessing to us, and we continue to need the support. Look for an update soon announcing new dates on the meal train website. Our heartfelt thanks to all of you who have helped feed us in the past few months.

Continue reading Tara’s story here: Facing Mesothelioma One Journal Entry at a Time: Part Nine

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