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.”