Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Sunday, April 24, 2011

Diagnosis page 2 April 21st 2011



(Written by mommy again) This is page 2 of my facebook notes, a continuation of the diagnosis day, written Sunday night the 24th: Okay (Whew..Tyson's asleep) where were we...I just want to mention how strange this is for me that so many people are suddenly following our life on a daily basis. I think I am naturally a reserved, quiet, private person. I don't like to express or show my feelings in public. So I am writing this primarily to have one place people can go if you have questions so that I can let yall know what is going on without having to repeat the stories and updates a million times. I understand...I would be curious and concerned if someone I knew was going through this so here ya go. I just hope that you will respect our privacy at home as we adjust to this 'new life' and respect that we can't have lots of visitors (because Ty is immunocompromized) so even though your first reaction is to 'do ' something for us, for the most part the main thing you can 'do' is say lots of prayers. Don't get me wrong, I understand I can't do everything by myself, just know that if there is something you can do, i will ask. :) Please make sure you don't visit or bring anything from a home where you have or have been exposed to an illness. Please don't invite my kids over if someone at your house is ill. We know we can't avoid every situation where we will be exposed to things, but we have been instructed to be very cautious.
Anyhooooo on with the story. Picking up on the morning of Thursday, April 21st. I left Dr. Burtons office in tears and as I was driving to the hospital for the second lab Dr. Burton called my cell and told me to go directly to the 6th floor of the hospital (pediatrics) after the lab was completed, that he had called Dr. Jensen (whom I actually have met before through mutual friends) and he would meet me up there with the lab results and would contact Primary Children's for me etc. I called my mom on the way into the hospital, she was already watching the littles for me, and my dad arrived shortly thereafter. :) We sat in that room for a while waiting for results etc. I called brady's mom, called the red cross so they could get started on notifying Brady, called my visiting teacher to let her know I wouldn't be home that afternoon for her visit, and made some arrangements for the kiddies in case they wanted to stay and go to school Friday. My dad and I worked out how we were going to get down there with the little buddy, and how the rest of the kids would go later with my mom to my sister's house in Kaysville. My brother in law who successfully fought (exoskeletal ewings sarcoma) a rare form of cancer 15 years ago came up to the hospital and hung out with us, which was extremely helpful because he knew what kind of questions to ask the doc, and he got me some lunch :). The doc tried to get us directly admitted to Primary Children's based on the labs, he said he didn't see any blasts but that that didn't mean they weren't there. He said it could be a bone marrow infection, or leukemia and let us know a little bit about what to expect when we got to Utah. Tyson and I went home and he watched tv while I wandered around the house in a fog gathering things that I thought we might need, I also got the ds's out of their confiscation hiding place (I did have to pray to find them since I couldn't remember where I had hidden them :), and plugged them in to charge so the kids could use them later on their trip. I finished up an email that I had started to write the night before to Brady letting him know what we knew so far. (Their internet had been down since Tuesday night so he had no idea yet which I thought was probably fine since he would just be going crazy anyway waiting for info) We went to my mom's and I fed Merin and we hit the road. I held Tyson and we both tried to sleep. In the ER at PCMC lots of doctors came to see him, feel his tummy, ask about his symptoms, take more labs :( and that was when we got the official diagnosis from the pediatrician there. She was great, and filled out Brady's red cross alert paper in a way that requested his presence for us so we are thankful for her. They finally got us admitted and into Ty's new room at about 11:30. The nurse immediately took him with her to show him the special snack kitchen and got him some frosted flakes and a banana. He was happy as a clam until he realized that we were sleeping there, it took him a while to go to sleep, and once he was asleep he cried in his sleep for a while off and on. They gave him a blood transfusion some time that night, and he slept a lot better after that. I am betting that he slept better cuz his heartbeat was back to normal instead of working overtime to pump the limited supply of blood he had before. so there you have it...I'll write more later if I feel like it. thanks for all of the kind thoughts, faith, and prayers. Amy

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