Thursday, June 27, 2013

Life with Leukemia

I never thought I'd have to write a post even similar to this one. My life is way too easy.
I read a lot of blogs, a lot of traumatic ones. I get sad, because those poor peoples lives changed soooo fast and how horrible for them, and paranoid, because what if one day my child drowns too? or something else crazy like these peoples lives and then move on because it's not my life and I don't have to deal. Well, I guess I forgot to knock on wood at some point.
A few weeks back Tyler got sick, he assumed he just picked it up from someone else so it would eventually go away. He was headed out on a business trip and got a blessing from our neighbors. He felt pretty good. His flights went really well (which is huge for Tyler because he hates flying) and he felt mostly good the whole trip. He came home and the following week he was up and down to the point where I eventually decided to take him to the Urgent Care. We got there and they took some blood, a chest X-ray and gave him an IV with some meds. The IV made him feel great! We picked up a Z pack and headed home. He didn't sleep so great that night and the next morning his fever was up and he was still sick. As I went about my day I got a call from the urgent care asking us to come in and chat with the doctor about the results of the blood tests. That made us nervous, but we assumed that his pneumonia was just worse and he would need to be hospitalized.
We had to wheel Tyler into the office, he was still not feeling well. The nurse sent us back into a room. I knew the doctor was outside our door and I thought he was taking a little too long for my liking. Finally he came in. He said lots of stuff, all of which I don't remember. What I do remember is his talking about Tyler's white blood cell count and how it should be 10 but it is 99. That seemed wrong. He said some more things and then he said "You have Leukemia". I'm sure he used some nice segway into that statement, but I didn't hear it. We reacted as you can imagine, lots of tears and questions. Poor Dr. He couldn't really answer most of them for us. Just kept telling us that there was treatment. He sent us to get some blood work at Timpanogas Hospital. They weren't able to get it done on a Saturday so we headed back to Tyler's parents to wait and let it sink in. The Urgent care doctor called within the hour. He let us know that after talking with the oncologists at Huntsman Cancer Hospital they have decided to get started on all the testing right away. We waited just another half hour and the HCH was calling us with a room number. We left Sawyer at Nanas and headed up to be admitted.
I made a few calls in some of these waiting moments. Most were just a few sentences long, because what do you follow up "Tyler has Leukemia" with? Thank goodness the people we called were gracious enough to handle these insane calls.
We have been at the Huntsman Cancer Hospital since Saturday afternoon. The first few days were a blur full of testing and questions and scans and blood work. I've met more people this week then I have all year! Each one had been amazing. They are all kind and have happy demeanor's. They encourage us to ask questions so there is no confusion. They break things down for us so we can better understand. They have let me watch Tyler's procedures so I know what is happening. They will show us his scans and x-rays and point out what they are looking at.
The worst procedure by far was the Bone Marrow Biopsy. Don't google it... I can't imagine finding anything pleasant. It was not fun for Tyler but provided us with the results we needed. On Monday Dr. Sour head doc brought us the news that they were officially diagnosing Tyler with CML, Chronic  Myeloid Leukemia. Strangely enough we let out sighs of relief. We knew we were up against one of 2 types. AML and CML. Google those and learn the differences, but AML has a much more aggressive treatment. CML, once stabilized is a pill a day and lots of follow ups. By no means does this mean that Tyler's life wont be different, but it will be livable and he will enjoy life with Leukemia.
Since Sat Tyler has had a fever daily. There is some infection in his body that we are chasing down. Hopefully the latest tests can tell us what it is. He is extremely tired and worn out, which I would be too, well actually I am, just not as bad as he is
Thank goodness for family and friends. Sawyer is at his Nanas. He loves her and their house. The dogs are at a neighbors being taken care of. So many people have called texted and visited as word has spread and we love the love! Tyler needs your prayers to keep up his strength as he fights off this infection.
Each day it seems we learn we will stay another day. Right now I'm thinking it will be Tuesday before they let us go home. But who even know??
Tyler is amazing and this situation has been hard on him, but he's staying strong. He's going to pull through this. I've been trying hard to journal each individual day and maybe eventually I will blog about those. As for now we will update Facebook with any important or maybe not so important news so everyone can know whats going on.
We love you all!
Oh! Please don't post anything on Tylers facebook wall about this. If you have questions we are so happy to answer them through my Facebook or by texting me. Phone service is not the greatest in our room, so it will probably be delayed response.

4 comments:

Bec said...

I love you, I love Tyler, I love Sawyer, I hate leukemia. Saying prayers ever since I heard. I put your names in the temple. You can do hard things. I have had a few good dips in your pool while you've been gone. Just kidding. Love you guys!

Lorraine said...

Thanks for keeping us updated. You both have been our thoughts and prayers. Sounds like Tyler is getting the best possible care and it is wonderful that you can stay with him. I'm sure that's a great comfort to your sweetheart. So glad to hear that you are getting some rest. Stress is very tiring. Big hugs!!

Anonymous said...

We'll be keeping all of you in our prayers daily. You guys were such great neighbors and even better people.

Donnie and Patricia Lee

tickled in love said...

Oh my goodness girl!!! I've been down this road not as a wife but as a niece and a daughter! This is a hard to pill to swallow in life and it looks like the two of you are doing it beautifully. You never know what life throws your way and that's soo scary. We've been keeping you two in our thoughts and prayers! Warm hugs and love from us!