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.