Brody Update

Brody is now sleeping most of the time.  He has continued to need increases in his pain medications to bring his pain under control and we have added new medications to help with the nausea.  He is still significantly nauseous despite the changes and we are still working on other ideas to relieve the nausea.  Until about a week ago, the nausea had been controlled pretty well and Brody had been enjoying "tasting" and drinking.  He no longer has any desire to "taste" any foods and has not wanted anything to drink either.  Lately, the only time we get to see Brody awake is when he has to "go potty."   He is not going "potty" as frequently as he had been.  He generally wants to go immediately back to sleep after he is done going potty too.  Brody slept through Christmas and had no desire to awake and take a peek at what Santa had brought for him.  He has a mountain of presents still setting under our Christmas tree and a big box from Santa that he has not had the energy to want to open.  We have asked him if we can open the presents for him and he doesn't have the energy to watch somebody else open the presents either.  His buddy, Levi, brought him a new parakeet a few days ago. Brody had been saying that he wanted another parakeet so Bluebee could have a friend to play with.  I expected him to be very excited to see a friend for Bluebee but he was too tired to really even look at the bird.  All he wants is to sleep.  (Bluebee does seem very happy to have a buddy though).  

Last night, Brody actually woke up for about an hour.  He wanted to watch some TV.  This was the first time in about a week that Brody woke up to do anything besides go potty.  I was, of course, ecstatic for that hour of time last night.  He didn't want to talk at all but I enjoyed watching some cartoons with him.  I got to hear his precious, adorable laugh!   Brody started taking dexamethasone as an additional nausea medication yesterday.  It can sometimes cause insomnia so I am hoping it helps him stay awake every once in awhile in addition to helping the nausea.  I am hoping he gets to enjoy some more moments here and there.  

Christmas was difficult.  Brody was with us but he wasn't.  He was sleeping and too tired to join the festivities.  It felt like it was actually our first Christmas without Brody although technically it wasn't.  My mom, dad, brother, and grandmother all stayed Christmas Eve and Christmas Day with us.  Brody had been looking forward to seeing them all again but was too tired to visit with them.  I think he liked knowing they were here for the holiday though.  It makes him happy even if he's sleeping to just know his family is right here with him.  

I am sorry for the lack of updates to the blog lately.  It's been hard to actually put into words what we are going through.  It's just so awful, I have been dreading putting any of it to words.  Our Brody is not really here with us anymore.  He's our sleeping cutie and I am so thankful I can still look at my cute, sleeping little boy.  But, at the same time, I want to cry everytime I look at him too.  He isn't really living his life anymore.  I hope he's having mostly fun and wonderful dreams.  Sometimes though, it sounds like his dreams are sad and painful.  There are times I do hear him crying as he sleeps.   I wake him up when it sounds like he's upset or hurting in his dreams.  I always ask what he was dreaming about and he never remembers what was upsetting.  He did share with me that he dreamed of a little girl named Tiana.  She died of rhabdomyosarcoma in 2011.  She was treated at Toledo Children's Hospital too and Brody enjoyed talking with her a few times before she had died.  He really didn't know her very well though so I was very surprised that he saw her in his dreams.  Tiana made a wish on her birthday shortly before she died that all of the kids in the hospital would get Christmas presents on Christmas and that there hospital rooms would look like their living room would on Christmas morning.  Since 2011 her parents have honored their daughter's wish and put the wheels in motion to bring Christmas presents to all the kids being treated at Toledo Children's Hospital and Mercy Children's in Toledo.  We received gifts for Brody, Geordi and Jaden from Tiana's Wish.  When I showed Brody his gift from Tiana's Wish, he said, "That's funny you are giving that to me now.  I just dreamed about her."    I was so surprised to hear him say this.  I had not been talking to him at all about Tiana nor Tiana's Wish.  I don't know why she would have been on his mind to be dreaming about her.   I, of course, asked him what the dream was about and I got his usual response when asking about his dreams that he didn't remember it.  He said, "I just remember that she was there."  I shared this with Tiana's mom.  She let me know of two other kids Tiana knew from Toledo Children's that reported seeing her in their dreams (one actually saw her standing in the room while he was awake) before they too passed from cancer.  It really makes me wonder if she is helping Brody somehow adjust from this life to the next.  

The Ugly Christmas Ornament Tradition

This is a picture of an ornament my sister so proudly made many,  many years ago.   It's hard to tell but it's a shepherd and a sheep.   She loved this ornament and was so very proud of her creation.  Of course,  every year she would find a prominent spot on our Christmas tree for her precious masterpiece.   And,  every year,  our brother,  Dan,  was jokingly apalled by this "ugly" thing being front and center on our family Christmas tree.   He would always grab it and hide it somewhere else on the tree because it was just "too ugly to be seen."   Julie would always search and search until she found it and place it back front and center again only for Danny to find it there and hide it again.   This cycle would repeat over and over again from the time the tree went up until it was taken down year after year.   This tradition continues to this day.   But now Julie's kiddos are in the court of Julie's ornament is beautiful and should be front and center on the Christmas tree.   Whereas my kiddos team up with Danny and say it's too ugly and seek to hide it somewhere on the tree.  

My parents Christmas tree was put up on Thursday and we drove to my parents on Friday.   Brody couldn't wait to get down to his grandparent's house and assure that ugly ornament was well hidden.   It was the first thing he thought of when we told him Papaw and Grandma put their Christmas tree up.  

Good luck getting that ornament front and center again this year,  Julie!   Lol!

Brody getting ready to enjoy one of his favorite foods... Papaw's Gravy and Biscuits

Only Papaw can make Biscuits and Gravy just right for Brody.   

Brody and Papaw always jokingly argue about whether it's biscuits and gravy or gravy and biscuits.  

If Papaw says,  "I made you biscuits and gravy", then Brody will say,  "I want gravy and biscuits not biscuits and gravy."  

If Papaw says,  "I made gravy and biscuits"  then of course Brody will say he wants biscuits and gravy. " 

They both always have their laughs about this argument everytime.   And,  everytime Brody enjoys his biscuits and gravy or gravy and biscuits no mattet what.  

I will always think of Brody whenever I see a plate of gravy and biscuits or biscuits and gravy.  

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!