Back to Five Days of Chemo

Hello Everyone,

I hope this blog post finds you and your family safe, healthy, and hopeful.  I recently watched an inspiration video clip about hope and the need to hold onto hope, no matter how dark or difficult our circumstances are.  Since the beginning, I have been blessed with hope.  Everyday is a miracle for me and my family.  I hope for a better tomorrow and hope for an eternal family.  The everyday things that we deal with become insignificant as I ponder my Heavenly Father's plan for me and my family.  This earth life is so short compared to the eternities that lie ahead.  My goal for this life is for my family to know that I loved them unconditionally and my greatest desire is to be with them for eternity with our Father in Heaven. I pray that my actions with show this.

Time for the update: PET scan last week, on Tuesday the 8th and we talked to the oncologist on the 10th.  I was hoping for things to be stable so I could continue with the four days of chemo per cycle; but alas, that was not to be.  Unfortunately, the scan showed "mild disease progression" across the board.  Most, if not all, the tumors had increased activity (they glowed more) and were slightly larger.  Nothing was significantly larger, for which we are grateful.  They were some new areas of concern compared to the last report, but these may be areas that were reported in past scans, just not the scan previous to this one.  Anyway, you get the picture.  This was not what we were hoping for, but we are so grateful that it is not worse.  

So, what do we do now?

We talked about a couple of options that seemed the most logical.  The most straightforward option is to go back to five days of chemotherapy per cycle.  This seemed to be keeping me stable prior to changing to 4 days a week. (The reason we changes to four days is because some studies came out that said lower doses are effective in some patients.)  I do not like this, but it is after all, only one more day.  I was doing it before, I can do it again.  The other option is to try to get into a clinical trial they are doing at Memorial Sloan Kettering Cancer Hospital in New York.  The trial is specifically for my type of cancer - Desmoplastic Round Small Cell Tumor.  We are going to have a phone call with the doctor running the study and see what her she would recommend for someone in my situation.  Please join us as we pray for inspiration and guidance as we try to decide how to go forward.  

My family and I have been very blessed during the pandemic.  I have been able to work from home.  The kids have been able to go to school from home and play outdoors with friends.  The nice thing about the cold, is that you just had more layers and you can still be outside and play 😁.  We had some days in the summer when it was just too hot to be outside.  It is a good thing that the kids love to play in the snow - we better check the condition of the sleds.  I have been able to work in the yard and feel like I am still able to contribute to the family.

Something fun about this summer.  Daniel made a swimming pool for the back yard.  He built a rectangular frame out of old doors and scrap lumber, then strapped a big tarp in it.  (Matthew did add some extra support when one of the doors failed.) The frame was 8 foot by 6 foot and could be filled to about 2.5 feet high.  The kids have been having fun with it all summer.  Annie turned 8 in August and wanted to be baptized.  We got permission to use Daniel's homemade swimming pool for Annie's baptism.  They were so excited.  We had about 20 people in the back yard and had a wonderful service.  We missed all those that would have come if we could have had more people.  (Stinkin' virus!)  

We have been growing closer as a family as we are spending more time together.  School keeps the kids busy, but we are finding a good balance between school, friends, and family.  The kids keep asking when they can play inside their friends houses (like before the pandemic) and we just tell them that we don't know.  They have been such good sports about the whole thing.  They are following our instructions - with minimal complaining.  This sure has been a crazy year.  My cancer has been one of the more consistent things about it!

We love you all.  Thank you for your prayers, faith, love and kindness.  Every act of kindness and thoughtful gesture is appreciated and has an impact.  

I have really enjoyed the thoughts about coming together and getting through this by helping each other.  That is the best way to get through any trial - being supported and loved and giving support and love.  May Heavenly Father bless us all as we try to do as the Savior did and lift hose around us.

-Doug-