Quick Brody Update

We all enjoyed Thanksgiving together.  My mom, dad, grandma, brother, sister and her family all traveled to our house for Thanksgiving.  My sister, her husband, and her 3 girls (Ella, Ava, and Lilah) were all able to spend Thanksgiving and the weekend with us.  Brody was very tired for much of the holiday but was not in pain.  He greatly enjoyed eating some turkey and stuffing.  We were very nervous it would clog his g-tube but he was extremely careful to chew it well.  He got to enjoy it with  no vomiting episode to follow it.  My mom's stuffing is a fave of everybody and especially Brody.  He was upset when the stuffing was all gone.  My mom ended up making him another pan of stuffing this past week just for him.  Lol! 

We had a family Christmas gift exchange on Thanksgiving too.  Brody was too tired at first to open his presents.  His cousins helped get him started and he soon joined in.  Brody was so happy to spend time with family.  He wasn't awake for much of the time but he was smiling and happy to see everyone when he was awake. 

This week Brody was looking forward to making a trip to Lebanon, Ohio to participate in the Lebanon Horse Carriage Parade.  We usually do this parade with my parents and their horses (and usually my sister's family too) each year.  It's an annual tradition in our family now.  Brody wanted to ride in the parade again this year.  We made it to Lebanon for the parade but Brody was just too tired to actually be in the parade.  Geordi, Jaden, my mom, my dad, and I, all did the parade together this year.  Bill stayed with Brody as he napped during parade time.  I was disappointed that Brody did not feel up to the parade but I am so glad we made the trip to my mom and dad's for the weekend anyway.  Brody has greatly enjoyed his visit.  He has been sleeping through much of it but he is quite obviously happy just to be here.  

Brody has continued to celebrate Christmas early.  We have been encouraging him to open a present each day whenever he feels up to it.  Lately, though, he has not felt up to it most days.  He is often just too tired and sometimes in pain or nauseous too.  Fortunately, hospice makes changes quickly to get Brody's pain and nausea back under control.  

Brody has continued to have bleeding from his gastrointestinal tract.  He passes blood-tinged mucus out of his rectum many times per day.  He spends a lot of time "going potty."   Often, he has to go about every 10 or 15 mins for several hours.  He easily "goes potty" 25 times per day or more.  Each time there is usually some bleeding involved.  Having to go potty this many times a day, all of his sedating medications, and fighting cancer make for a very tired little Brody.  This past week Brody is now passing blood into his colostomy bag too.  We have been told that this blood is likely from the tumor infiltrating the gastrointestinal tract or obstructing the gastrointestinal tract.  So far, Brody's g-tube continues to work well/drain well and we are not seeing any blood in the drainage from the g-tube.  Brody's nausea is under control with his current medications and the g-tube.  He continues to nibble and snack on some of his favorite foods being extremely careful to chew everything very well.  Otherwise his g-tube clogs.  The g-tube is the only way for food to move out of Brody's stomach.  Nothing really gets past his stomach (due to his tumor).  Anything he eats or drinks drains back out into his g-tube.  If it gets clogged, too much gets stuck in his stomach until it finally reaches critical volume at which point Brody starts vomiting.  Brody is very much aware of the risk he takes when deciding to eat or drink anything.  He often decides it's worth the vomiting risk to be able to eat and taste food.  All of Brody's calories, fluids, electrolytes, vitamins, etc are supplied intravenously as are all of his numerous medications (except for a patch he wears to help with his nerve pain).  His gastrointestinal tract is pretty much nonfunctional.  

Brody is still a happy boy despite all he is going through.  Lots of smiles and giggles everyday!   He is truly an inspiration!  He is praying for a miracle everyday to take his cancer away but understands that maybe that may not be God's plan.  He still believes he will beat cancer though.  He still talks about what he will do when his cancer goes away.  Sometimes he will admit that he might have to do those things in heaven though and that maybe his cancer won't be gone until he's in heaven.  But he certainly would prefer for his cancer to just go away and for him to stay here.

We are all hanging in there and getting through this ordeal together.  These are horribly awful and incredible precious days all at the same time.  There are no words to describe how horrible it is to watch your child die.  Then at the same time we treasure each and every moment and gift of time together we are so lucky to have. 

We are also extremely fortunate to have had such tremendous support through all of this from our family, friends, and community.  I do not know how we would cope without all of the help.  We are forever thankful!