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Posted 2019-11-18T14:35:02Z

11-18-19

Niki & AJ’s formal wedding was fabulous. I had written a number of speeches going back 4 months and each one never worked to keep it about the wedding, as each time I mentioned Ryne or Tami I was crying idiot number one, even sitting quietly by myself. This was a challenge. As bright as I already see her light, what she has been able to provide us as we have journeyed through Ryne’s accident and infirmity, as well as Tami’s destructive battle against Cholangiocarcinoma is not only unexpected, but profound. She has not only been her mamma’s wonder but her daddy’s life saver over and over. I only made it through by focusing on them and doing what Tami asked me to do: carry the torch and have fun for both of us. We did. 
We had hoped that she could come home Saturday but the infection was only slowly responding. Getting blood really made a difference in her energy, and I see a different light than before. Her pain is our current challenge and Dr Puray and Dr Gallardo thing a very low dose of Radiation therapy could palliate this and help her pain. That will be 3 or 5 small doses only starting this morning at 8 am and daily until complete. Why 3 or 5? I was not there as this conversation all happened while we were gone for the wedding, but I shall find out this morning. None of the articles are designed around her tumor type, although her type in it’s location acts a lot like pancreatic cancer of the head of the pancreas, and there are studies on that. It should not have any negative effect on Tami.

The rather interesting thing to me though is that I have been watching Tami have emesis of every thing she drinks for 6 weeks at least and progressively worse. She would drink soda even though she knew it would come back out because it tasted better than the mucous that had no where to go. Her tumor was blocking any outflow from the stomach for the same reason Dr Banergee could not get in to change her stent. The tumor had grown too big. Her PET/CT (thanks El Portal/Duane) last week showed the tumor to be 8 cm. Yesterday when I was the last one there, and there had been a steady run of visitors as so many from out of town wanted to see her. She was exhausted in a good way, but getting back to my story, she drank a big sip of water and set down her ice container. I said, “Hey, I haven’t seen you through up once since before the wedding. Have you thrown up today?”. She said, “No”. I just furled my eyebrows a bit and said, “Why not?”. She just looked at me and said, “I don’t know.”. “Well. There has been a lot of very profound prayer. (And when I mean alot, I mean alot. We are thankful from the small prayers to the group prayers. They do not go for naught.) The only way you could not throw up what you are drinking would be if it is getting through, right?”, is all I could say. I wonder if the tumor is shrinking? A CT the night of her admission showed the tumor right there obstructing. So now what? We shall see...

Ryne is great. We need more.

F&P

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Comments (5)

  • Terri Mulder
    Terri Mulder

    Ahhh, it was wonderful to be a part of Niki and AJ's big day....and you did just what you said Mark, and for just a brief time the sadness was put aside. It was wonderful to see and touch Tami, intending to transfer some of my strength to her through our hug. I hope she accepted it and it helps her through this next hoop she must dance. Love to you all, a miraculous family, awaiting His full blessings. {{HUGS}}

    21 days ago · Reply
  • Michelle pecchenino
    Michelle pecchenino

    Thank you for the update. We are so happy to hear the wedding went well. Our continued love & prayers for Tami to tolerate feedings and drinks and to all of your family. Love, Garth, Michelle, Dante, Taylor & Dominic

    21 days ago · Reply
  • Vivian Cheeseman
    Vivian Cheeseman

    Thank you for sharing. It sounds like a beautiful night! We too continue our prayers for your family, and especially for Tami today. Love to all.

    21 days ago · Reply
  • Stephanie Jaurique
    Stephanie Jaurique

    Such a beautiful post today of love and joy, faith and hope, strength, courage and the testament of the power of prayer. So happy the wedding was wonderful and wish Niki and her hubby a lifetime of happiness. Continuing to lift Tami in prayer and for continued healing, wisdom and guidance for her doctors as they seek out new treatment options for your beautiful love. Praying for all of your family, love and hugs to you all.

    21 days ago · Reply
  • Kristin
    Kristin

    Continuing to pray for each one of you, to lift up Tami and my new Bible study that meets at 6:30 a.m. each Tuesday is praying for her. Much love to you Mark and thank you for praying. Sending virtual hugs filled full with healing love.

    20 days ago · Reply