Brighton Taylor's Journal
A long time coming...
Written Feb 10, 2014 10:25pm
It has been a long time since we last updated. A lot has happened for Brighton. Today, he went in for a spinal tap and bone marrow extraction/biopsy. It was a very difficult and long day for the little guy. After he was sedated, they tried to extract bone marrow from his left hip, but he was not giving anything up. They had to switch to the right hip which they were finally able to get some bone marrow. After the extraction, it was on to his spinal tap. Again, he was not giving anything up. After several attempts, they were able to get some spinal fluid. He was definitely being stingy with his fluids today. Because the nurses had trouble with his body cooperating, he was given a lot more sedation meds than usual. He went under around 9 or a little after, and we didn't leave the hospital until after 1:30. We had a heck of a time waking up our little trooper! He was given three types of chemotherapy today. One was given through his spine and the other two were through the port. He slept right through it all. He did give his mom a scare when he sneezed so hard that he blew everything out of his head. When that happened, he had a terrible bloody nose. They were able to get him cleaned up and almost de-accessed before he woke up. (He would have been so upset- kind of a neat freak! I wonder were he got that from, not his dad!) We were told today by his doctor that after three years, seven months and five days, he is done with chemotherapy. He will continue to have to have monthly doctor visits, but not anymore chemo! He was so excited to hear that. Also, in about six months, they will remove his port. After we were finally able to get him up and moving, he was the same ornery little boy that walked into the hospital this morning. We celebrated as a family (Grayson and Mic were excused from school) and went to eat at the T-Rex Café at Legends. The kids enjoyed walking around and looking at all the animals, dinosaurs and fish. After lupper (lunch and supper), the boys each got a dinosaur. The Café has a Build a Dinosaur (division of Build a Bear) so they built their own dinosaur and dressed them in a cute outfit. It was an exciting, but exhausting day. The nurses and doctor told us that Brighton would be sore and tired, but that little trooper made it until his bedtime at eight and never once complained about his back (except to say that he did not appreciate the bandages that have to stay on until tomorrow morning.)
Tonight, before writing this, I went back and read his journals. It is hard to believe that it has really been over three and a half years since this all started. I can not say that I would change anything. I have never said why him, only why not him, me or anyone else in our family. For that, I believe it was easier for us to handle this whole situation. Our lives changed on July 5, 2010, but it was for the better. We are not the same people, we have grown as a family and will never take life for granted.
To everyone that sent messages, prayers, positive words of encouragement or support, we are forever indebted to you. We can never repay everyone for what they have done for our family, so our goal is to "pay it forward" to someone else. God Bless each and every one of you for your continued support. We love you!
Kris and family
Written Nov 13, 2013 8:42amWell, another stay at KU Med. Brighton has been there since Monday, but we are probably going home today. It started with him feeling yucky Friday night and Saturday. We didn't really think much about it since he wasn't running a fever, just a little stomach bug. Well, Sunday he ended up with a fever of 102.5 so it was a trip to the ER. they found out that he had strep and was also neutropenic. They gave us a heavy dose of antibiotics and sent us home since we were going to KU for treatment anyway.
They did not give him his spinal (that is next Monday) but they gave him his chemo, de-accessed his port and sent him and Kris home. After a stop at McDonald's and a short trip down the road they were called back to KU so he could be admitted for his low WBC count. Brighton was TICKED! He did not want to be poked again. Can you blame him.
Brighton has not been running a fever so they are giving him some more doese of IV antibiotics and sending him home today. He seems to feel better because he is so darned grumpy. Looking forward to being home with him tonight.
Thank you for all of your prayers. They are amazing. Read an article on yahoo today about a 13 year old girl that lost her battle over the weekend. Please pray for the family of Caitlyn Jackson.
Written Aug 29, 2013 11:02pmHas it really been April since our last post? Bad Daddy. Okay... So much to tell you all. Brighton has been doing really great. He is in the last few months of treatment... It has been over three years. WOW!!! He is in first grade now and all grown up. He loves school and hanging out with his friends. He was ready to get back to school. I think that he got bored during the summer and so he got into A LOT of trouble at home. When he gets bored he gets mischievous.
So... Not much else happened over the summer except My brother Tim and his wife Stephanie had their second son Winston. Darn he is cute (has to be the Taylor genetics).
The rest of the family is also doing well, Mic is now a middle schooler (Lord help us) and is out for cross country. She sure is growing up fast. Grayson is now a second grader and out for soccer. We have a new team since his old coach left and went competitive. We miss Brian, but we also like our new coach. We'll see how the year goes. He says that he likes it but he seems to bore easily and does not always show much interest in practicing.
Kris and I are back at school and trying to stay caught up on everything. She really amazes me with everything that she gets done around here. I am really blessed. I have decided to take over as Grayson's cub scout den leader. It will be an experience. Brighton also joined scouts, but he will be in a different den since he is a year younger.
It has been a LOOOONG journey to get where we are. Sometimes I cannot believe everything that we have gone through. We could not have done it without your prayers and support. Thanks for everything that you have all done for us. Hopefully we do not wait 5 months to post again... God bless!