First Update

First Update

Grace has done an excellent job maintaining her weight and has in fact gained about 3 pounds. Her appetite is getting better and the cough and shortness of breath have been improving since the first cycle of chemotherapy. She had intermittent blood tinged/rust colored sputum that started about a week after the first cycle of chemotherapy, but this has now resolved. We’re hoping the color of her sputum represents dead tumor, which helps Grace not feel so spent when she’s coughing it up. She used to get what we suspected myofascial pains by her ribs when she coughed; they would cause a significant amount of pain especially at night requiring pain meds to go back to sleep. She still has an intermittent productive cough throughout the day with clear sputum, but has not been needing any cough suppressants or pain medications. Thank you, God.  She is much more energetic and we have been walking 2 miles at Crystal Cove beach daily (Find me on Strava if you would like to track her progress). We always go around sunset to (1) avoid harsh sunlight, and (2) to appreciate God’s majesty in the beautiful spectrum of sunset colors on the beach every night, from cotton candy pink to orange-purple ombre. I notice she gets wistful when she sees runners on the beach, because that was her not too long ago on her days off. She loves parking her car at the houses adjacent to Crystal Cove for the free street parking and running down to the beach. Thanks to our parents though, we now have the California State Parks Adventure Pass, so we can easily go straight to the Crystal Cove beach trails anytime. We’re trying to increase the mileage to build up her stamina, though I’m thoroughly convinced that she’s capable of doing her 5-mile Turtle Ridge-Bommer Canyon hike that she used to run from our place. Any volunteers on keeping her company for that hike?

Tracing back a few days, On Friday, 9/7/18 we met with our City of Hope oncologist to discuss a game plan, after he had spoken with his colleagues in Boston. We decided to continue our current chemotherapy/immunotherapy regimen with carboplatin/abraxane/pembrolizumab. Thus, cycle 2 will start 9/17/18 with the plan to obtain a PET-CT scan 2 weeks after to track response to chemotherapy and immunotherapy. Historically we have not seen NUT cases in the literature that use chemotherapy with immunotherapy and we are hoping for a positive result.

In the meantime, we are also planning for the future by preparing to enroll in clinical trials with targeted therapies. Two specific target agents that appear promising are bromodomain inhibitors (BET) and histone deacytelase inhibitors (HDAC).  Today, we just arrived in Houston to visit MD Anderson for an additional medical oncology consult and possible enrollment in a phase 1 trial for a histone deacetylase (HDAC) and PI3K inhibitor. Thank you Shane and Pascale for the Houston hospitality and for letting us sample that crab enchilada (that set a new standard for us, and Grace will now be thoroughly disappointed with every Mexican restaurant we go to back home if they don’t have crab enchiladas).

In addition to searching for clinical trials, I have also been in contact with the NUT Midline Carcinoma NMC Registry Team. If you are interested to find more information regarding this disease, the NMC Registry is a great resource to start with. http://www.nmcregistry.org/index.html

Thank you to our family, friends, doctors, nurses, and everyone else we have encountered along the way. Your support has been overflowing and we are truly blessed. The magnitude of love, support, heartache, roller coaster lows and highs that we have experienced in this short past month has made us reflect on how much God is in control. At first, it doesn’t sound right typing that because you would think that a rare cancer diagnosis out of nowhere in a perfectly healthy and thriving 27-year old anesthesia resident is absurd and cruel. But how could the devotion of family flying in from across the country solely to emotionally support us and our family be cruel? How could unexpected, incredibly generous gifts from friends and work colleagues be absurd? Without pain and suffering, how can we experience such stratospheric examples of love and kindness? At the risk of sounding cliché, without bad, we can’t know what is good. God is grieved when His children suffer, just as He was grieved for Job (we’re working through that book currently). I don’t know why Grace is suffering now, but I can say that she’s going to be radically changed by this ordeal for the better. There is a purpose for this and for every bad thing that has happened in her, my, and your lives. Whatever belief you may have, I’m sure everyone has a story about something bad that happened to them that has illuminated itself to have been a catalyst for something beautiful to happen in their life at a later point.

In case you couldn’t tell, Grace may have jumped in and written the more eloquent parts of this post. It’s going to be a joint effort, like it’s always been. We’re a team, but more of a triad rather than a dyad. As one of Grace’s bosses so beautifully reminded us, a cord of three is not easily broken. This cord of three strands represents God, Grace, and me, and God will not fail us in our team effort to save Grace’s life on Earth.

Thank you all so much for reading this, sending all your uplifting comments, and for being the village that surrounds Grace to support her through this. We are so grateful.

 

“Finally, be strong in the Lord and in the strength of His might.”

-Ephesians 6:10

 



22 thoughts on “First Update”

    • What a wonderful piece you two have written. Someone in the family needs to get into writing !! God Bless you both love Karen

    • Tremendous grand job to both of you and all the “villagers”involved in making positivity happen! So very glad that Grace is feeling some relief during her courageous fight. And Ashton, you too have and will always be a true inspiration.
      We love you <3
      Walt & Sharon

  • Love you so much Gracie and Ashton!!! So many people from across the nation praying for you to heal Gracie, and they send their love to both of you. Each and everyone of us have faith and believe in the power of prayer!!! Always here for you! Lots of hugs❤️ Mom and Dad

  • “I notice she gets wistful when she sees runners on the beach…” Hang in there Grace and Ashton!

    Love that you two (three) loved the crab enchiladas

  • I believe in medicine and miracles, and both of you as well. Your determination and many strengths are an inspiration. There are no answers as to why you were chosen to face this challenge, it all seems so unfair, but you meet it head on with courage and dignity. You epitomize your name Grace, both in God and the way in which you live your life. My heart, thoughts and prayers are with you always. I believe….

  • Ashton & Grace, I’m in absolute tears after reading your latest update. It is so beautifully written. I truly admire your strength and faith through this all. You guys are such an INSPIRATION. <3 We love you!!!!!

    • My dear, Ashton, I am praying for you and your beautiful wife whom I have not yet had the pleasure to meet. Keep holding onto the Lord with all your heart. The journeys through the valleys are difficult but He is with you!

  • Thinking of you both and sending you love and strength. Grace, you are a warrior in so many ways. Sending you positive thoughts and a big hug❤️

  • I love you both so much. You both are always in my prayers. I’ll be back in in LA in two weeks and plan on taking you up on the hiking offer. ??

  • The both of you are in my daily thoughts and prayers. Grace, you are a warrior and your faith is inspiring. I recently moved back and am working in Irvine and would love to take you up on your hiking offer! I’ll bring boba 🙂

  • The both of you are in my daily thoughts and prayers. Grace, you are a warrior and your faith is inspiring. I recently moved back down and am working in Irvine and would love to join you guys on a hike! I’ll bring boba 🙂

  • Ashton and grace, i am standing in faith and prayer with you both. Our God is indeed a miracle working God and will work out his will in your lives. This is a tough journey and will test your faith and resolve, however stand firm, knowing that His strength is made perfect in our weakness. This has been a tough month for me, with nnamdis birthday and the anniversary of his Home going coming up, but this past week as I listened to “In Christ alone” by Travis cotrell, a part of the lyrics stood out to me and drastically changed the way that I was feeling. I have listen to this song multiple times, but on Tuesday, those lyrics had a different meaning to me and frankly revived my soul. It reads “ from life’s first cry to final breath, Jesus commands my destiny, no power of hell, no scheme of man, can ever pluck me from his hands, till he returns or calls me home, here in the power of Christ, I’ll live”. God is indeed in control, take it one day at a time, trusting him through the journey, trusting him in your doubts, trusting him when you have strength and when you lack the strength to pray. He is able! Sending lots of love ❤️
    Ezi

  • Ashton and grace, i am standing in faith and prayer with you both. Our God is indeed a miracle working God and will work out his will in your lives. This is a tough journey and will test your faith and resolve, however stand firm, knowing that His strength is made perfect in our weakness. This has been a tough month for me, with nnamdis birthday and the anniversary of his Home going coming up, but this past week as I listened to “In Christ alone” by Travis cotrell, a part of the lyrics stood out to me and drastically changed the way that I was feeling. I have listen to this song multiple times, but on Tuesday, those lyrics had a different meaning to me and frankly revived my soul. It reads “ from life’s first cry to final breath, Jesus commands my destiny, no power of hell, no scheme of man, can ever pluck me from his hands, till he returns or calls me home, here in the power of Christ, I’ll live”. God is indeed in control, take it one day at a time, trusting him through the journey, trusting him in your doubts, trusting him when you have strength and when you lack the strength to pray. He is able! Sending lots of love ❤️
    Ezi

  • Both thoughts and prayers go out to the both of you and your family. Praying Amazing “Grace” continued Strength, Faith and Healing. Asking gor God’s Amazing Grace to cover all of this. Amen

  • I think of you both daily. I know my Grace is strong in faith. Know that I am by your side along your journey and love you both! God has a plan for all of us.

  • You both are in my prayers! God loves you both and hears your prayers. I was up in Big Bear and with Kiki made beautiful rocks for you Grace. We return to Big Bear and will visit the place high on the mountain!! We will pray again for our Grace on Oct 5,6,7th. I’m getting so excited to go back to the beautiful rock formation. Will be in touch after we return love Karen

  • Thank you both for taking the time to share such beautifully written updates. Remaining in deep prayer as your love for God and each other will prevail. God bless you always <3 I'm not a hiker but I can become one and great company 😀

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