Wednesday, November 20, 2013
Monday was our weekly (more like bi-weekly) visit to Huntsman. It was an early appointment which we soon discovered was a big mistake have you seen me in the morning? It’s not pretty. Neither of us enjoyed getting up that early.
It was pretty routine.
Labs drawn, by a nurse who isn’t brand new. Poor Tyler kept getting the newer girls who aren’t quite as smooth with that needle. It’s no biggie, but a painless prick is worth something to him. One of our very favorite nurses every time my hair is in a bun I think of her came out to see me in the waiting room. She switched jobs and is now working in our clinic! We couldn’t be happier. That made my visit!
They took us back for the actual doctors appointment so fast. We usually wait much longer. The waiting room was bumming me out so I was happy about that. We were seen quickly, so quickly in fact that the RN (she’s not an RN, maybe just a nurse… or a PA… or.. I don’t know) and Dr. D came in at the same time. Now that NEVER happens. But of course I’m sure they were just both so anxious to see us, who wouldn’t be? Dr. D left and came back a little later.
I appreciate the humor of highly educated nurse(?) R. She is quick on her feet with retorts to our ridiculous statements.
The results from Tyler’s bone marrow biopsy were back. In easy to understand words NO TRACES OF CML WERE FOUND! They refer to this as a complete molecular response. For those of you wondering, he still has CML, but the medicine is doing such an amazing job it can not be detected in the marrow. His body is amazing. We are soooo grateful for the huge strides it is making in healing itself.
We were out of the office by 10:15, got his refill which came to a grand total of 0 dollars by some strange miracle by 10:30 and were headed home. Well, not quite, I always insist that we visit the gift shop. They were setting out some colored bracelets you know the ones so we picked up a couple of orange ones (that is the color for Leukemia). I may have wished, just for a second, some Carcinoid Cancer no idea what that is on my husband so I would have a reason for a zebra striped bracelet. Did you know that the color for Brain Cancer support is grey? Kinda sad…
The only side affect Tyler has from this new medication is a small rash, that really is only there in appearance. It does not itch or burn or anything. He’s a lucky dude.
We won't have to go back up to Huntsman for 6 weeks. I’m almost not sure how to handle that! Is it weird to think that I may miss the hospital?
In other news, I have put up my Christmas decorations. Each of you who just rolled your eyes at me are welcome to judge, but I don't care, I love it (name that song). The past two years I haven’t really had the energy or desire to get them all the way up, so as soon as the decorating bug hit, I took advantage of it.
Sawyer started nursery 3 weeks ago. Maybe I’ve mentioned that… I can’t ever remember. But he loves it, especially the bubbles at the end. I’m so grateful for wonderful nursery leaders who care for him and make it a blast. I’ve never had my kid so joyful at the end of church. He will wave and blow kisses to just about everyone as we leave the building.
The tantrums have thankfully slowed down Sawyers and my own, although we did have a melt down over not being able to snuggle a cup of milk that one was Sawyers. He’s like a little sponge these days, copying and repeating everything we do and say. It’s a super fun and exhausting age.
Being a mom is great. We have a lot of fun. Each day is new and different, some days are easy and exciting and some days like today I sit on a diaper full of pee that has been left opened on my kiddos bedroom floor probably my own fault. Some days I am overwhelmed by the amount of hugs and kisses this little angel gives me, and some days I have to sit him in time out for biting Cooper or Lexi and leaving a bruise but for some crazy reason Lexi thinks it’s only means he loves her more.
I am blessed with wonderful friends who will let me be at their houses or come sit at mine. I am happy.
Wednesday, October 23, 2013
We went into the office on Monday to decide on a new choice for meds. I expected we would be taken back to see the doctor, but a tech called Ty back for labs. We didn't think he needed labs so we chatted with the tech. She told us that the study was actually back on and that the vials they were pulling were for the study. While they pull labs I wait in the waiting room (the room they do the blood work in is very tiny I tried standing in it once, but it was obvious I didn't fit) . I was waiting for a while… and I started to wonder what was happening… I look into the clinic and see them wheeling someone out of the small room. My mind races at this point… could that be my husband? is he hurt? why is he in a wheel chair? has he always been that white and pasty? It took me a couple of seconds, but after recognizing his clothes I knew it was him. The nurse came out to get me. Tyler had passed out not all the way, but pretty close as they drew his blood. They were attempting to pull 30 tubes of blood, and Tyler's stomach was empty, bad combo.
People who pass out during blood work get an extra special room with an ER bed and a TV. They also get tons of crackers and juice. Eventually, they did draw the rest of the blood. After the rush of nurses Tyler finally got to tell me that the study was NOT back on and the blood was being taken as final blood work to end the study. Along with blood work they would need a bone marrow biopsy DUN DUN DUN. We met with a new fellow (fellow being the stage of doctor he was not just that he was a man) who spent time with us explaining our options for a new medication. After going back and forth we had him write the information down so we could decide. Each drug has 2 names, it gets confusing!
After meeting with Dr. D Tyler had the bone marrow biopsy (done by the fellow). He tells me it was actually not as bad as the last time. He'd have to get you more info on that, but even just watching it wasn't as bad. I got closer this time and the doctor showed me how it was done. I'm thinking of doing his next one I'm sure he'd love that!
We decided on a new medicine and went to pick it up from the pharmacy. I was glad they let us get it right at Huntsman. I can only imagine what the guy at WalMart would think if I came in looking for my meds.
Basically starting this new drug is like starting back at square one, but with better blood test results. Taking that first pill was as nerve racking as it was 3 months ago. I figured if we made the atmosphere awesome, the pill would work awesome. I didn't give him a spoon full of sugar, but I did get him a bagel sandwich and we blasted the radio probably the coolest way to take a pill. So far he hasn't had any crazy reactions, and hopefully he wont. We feel really comfortable with the switch. We appreciate that our doctor was obviously concerned for Tyler's wellbeing. He was probably more upset about the switch then we were. And nothing makes you feel better then when a doctor cares for you the way this doctor cares for Tyler. An even more assuring thing is that if this medicine doesn't work we always have a back up plan.
I took exactly one picture of this last hospital trip. This was after the biopsy, it's proof it wasn't all that bad! I wish I could hire a photographer to follow us around. I always regret not taking more pictures after the fact!! I'd have loved to show you how he looked right after passing out. You might have also loved the zombies we saw as we drove home.
Can you guess what he is doing on his phone??? His work recently recorded one of his labs and put it on youtube, so we were listening to it. Nothing more exciting then listening to Tyler teach.
What else is happening you ask? Tyler is planning the ward Halloween party. I am stressing about Tyler planning the ward Halloween party. We are speaking in church on Sunday. I am stressing about us speaking in church on Sunday. Sawyer is growing up! I'm working on setting rules and boundaries for him because his brain is way too fast and smart for me. I've started watching our friends little baby Finley once a week. She is the cutest thing and Sawyer loves having her here. We went on an adventure to Park City with the Atkinson's. I'll blog about that later because people NEED to know what happened!
Wednesday, October 9, 2013
Leukemia may be the reason Tyler can no longer share a water bottle with anyone that’s really gross anyways, the reason he should avoid too many handshakes and kisses also he’s married so he shouldn’t be kissing anyone but me during the flu season, the reason the first Monday of every month has been lost to hospital visits but there are some things Leukemia didn’t take…
For example his sense of humor. It also did not alter his priorities one bit. He sticks to the important things. Why just yesterday I called Tyler (he was downstairs in his office. I was requesting to be relieved from mothering so I could take a nap shocker… I know… I knew Tyler had a few hours and would desperately want to help what dad wouldn’t. Instead of meeting my request he responded with,
“Well, how about instead I come up and eat lunch and then WE can play legos together while Sawyer naps”
Ummm I think he missed the point of my call. I even asked again if I could just nap and he insisted we needed to spend time together.
This morning I was picking up the house and getting ready to go out shopping. I asked Tyler if he would go with us. He declined making me think he had other things to do. He did…
“I’ve just got to finish this Lego set, oh, and then I’ll do the dishes in the sink” I love that he does the dishes, but I laugh at the order of importance
Making a shopping list for me is always stressful! I know I’m going to forget things and I worry about staying in budget. After I figured I had the whole list ready I said to Tyler;
“There’s just one thing worrying me about going shopping today” I’m thinking about staying in budget when I need to buy a lot of big items
Tylers quick response
“I know I know it must be Tuesday… double coupon day” Do I really complain about that every time I shop on a Tuesday? I wish you could have heard it. It’s obviously not Tuesday, he’s a little lost there, but really I do ALWAYS say that on a Tuesday and I usually just cancel all grocery shopping. I’m glad to know he has been listening.
As I read this over, these things don’t seem as funny as they did when they happened, but I’ll let you work at it and create the hilarious scene in your heads.
Here’s something funny in case this post didn’t make you laugh…
He put that hat on backwards all by his little thug self. It must be the California in him.
Tuesday, October 8, 2013
We haven’t had much to share as of late, but as the saying goes….
Monday was our monthly appointment and since things have been going so slow we figured, why not make it a marathon appointment?The only marathon I will ever run Because who doesn’t want to spend their whole day in waiting rooms? I know I do!
On Friday evening Tyler got the reminder phone call about his appointments, unfortunately we missed that call. In the message the mentioned a bone marrow biopsy.. WHAT?!! <------that’s what Tyler said. We called back, but they were closed so we had to wait until we got in on Monday. We were a bit nervous thinking about it all weekend, but I kept assuring Tyler it would really be ok (then praying that I knew what I was talking about). I vaguely remember being told that we were making a tentative appointment for one, just in case one last test came in off. makes sense right?
Monday morning, we get there bright and early for blood work. One of our nurses from the BMT unit was filling in and taking blood. It was so great to see her. She was definitely one of our favorites! We immediately saw the girl who had called us and asked about the bone marrow biopsy. She wasn’t sure, but was determined to find out if Tyler really did need one. Long story short, I was right, he didn’t! We moved forward with appointments.
We had breakfast after the blood draw
We hung out in the 4th floor waiting room something about that extra clean smell brings peace to my soul
We met with Tylers’ doctor (always pleasant)
It took awhile….
His blood counts look fabulously normal
He had an EKG, next time I’m making him put his own stickers on… I think we have it figured out
Tried to pick up the meds
Went and had an Echocardiogram, did you know those take 45 minutes? I sure did fall asleep in a chair in that dark room.
Picked up meds
Listened to an A Capella group
Grabbed a not so fabulous pizza
Went home! And because it’s not a trip to Salt Lake without something crazy happening… On the road back to the freeway, at a stoplight, there was a man laying in the street… LAYING IN THE STREET! He must have fallen. There were people all around him, one lady even brought him a jacket to use as a pillow. really lady? A pillow? How about lifting this guy up and off the street.
We saw a few other people we recognized. It warms my heart to run into them. Everything looks great for Tyler. The medicine is working as it should. His body is responding. We can’t ask for much more.
I am blessed to have a great friend (whom I share a b-day with) who has a sister in law with CML. A few weeks ago we had them over to our house. It’s inspiring to meet other people whose lives are on similar paths except they are ten times the people we will ever be. Her and her husband were beyond awesome and I hope we get to spend more time with them in the future. Her husband was VERY well versed in all things CML. It’s kinda nice to talk with someone who knows so much. He knew a lot of statistics and information we hadn’t heard. We are glad for our friends who brought us together.
Other then that… life is good as usual. We both had birthdays. We are both getting older Tyler more so then me. Sawyer is growing at an unprecedented rate. He does hilarious things daily and is obviously the worlds smartest baby.
We wont be back to Huntsman till next month, so hopefully nothing eventful with Tyler’s health happens in the meantime. or ever again
Wednesday, September 25, 2013
In honor of my 26th birthday…
1. I once was a coordinated teenager who could play sports, I am no longer that person
2. I have been in so many car accidents it has made me a paranoid driver
3. Most of you probably knew number 2, but did you know that I’m SO paranoid I sometimes memorize license plates of cars that I’m sure will hit me and then drive off without stopping? I figure if I have their license plate number memorized, the police can find them and match the damages on our cars… for example.. the other day I pulled into an empty space at Wal-Mart. The man in the space in front of mine was packing up his car. I was sure that since he didn’t see me pull in, once he got in his car to drive away, he would pull forward through the space and hit me. I memorized his license plate. He did not hit me (as most of you probably guessed). I also did not need to memorize his license plate because it was a neighbor of mine, I’m sure I could have found him easily.
4. I’m paranoid, but only about certain things (#2 and 3 for example)
5. I am paranoid my house will be broken into and I wont be able to call the police because the burglar will hear me and hunt me down so I have set up texting codes with a neighbor. She can call the police for me.
6. I wish my hair was super long again
7. I love Disney channel movies and shows. Miley and I used to have a good relationship (back when she was normal)
8. I would go to Disneyland over any amusement park anywhere
9. This year was my first time getting a flu shot (that I’m aware of, I probably got them as a kid). Oh and if you love Tyler and want to spend lots of fun, close proximity, time with him this winter you’ll get one too!
10. The other day I was sure I smelled fish in my friends ice.
11. I’m the worst person to ask for a book, movie, or TV show recommendations (mostly because I like the Disney channel)
12. The longest I’ve ever had a job was 3 years
13. I am a believer in retail therapy, and I think my insurance should cover it
14. I’m NOT paranoid when it comes to my child.
15. This last year was the first year I actually attempted to make food that had more then 3 ingredients (and most of them were successful)
16. When I was young I own a pair of leggings that were black with ghosts and I’m pretty sure some with pumpkins (nowadays they’d be in style)
17. My kids bowed legged walk makes me laugh
18. I’ve picked up a hitch hiker (but it was completely against my will and I’m pretty sure I wasn’t driving).
19. I love making to-do lists and (despite what some people say) they work wonders for me
20. When I find a show I like I overdose on it and will watch whole seasons in a matter of days
21. I didn’t love reading until after I was married
22. The furthest I’ve ever run is 7 miles
23. I love meeting new people (but only if I am with someone else, because if I am alone I apparently have some sort of new people anxiety)
24. I have the WORST memory there ever was (it’s really embarrassing at times)
25. I actually enjoy hospital stays. When I had Sawyer I loved it. I figured if I was ever in a hospital for a bad reason I’d learn to hate them, but I rather enjoyed Tyler’s stay (granted it was a super nice place)
26. I could eat Lo-Mein (which I always thought was chow mein) all day and night
Sunday, September 8, 2013
Last month Sawyer and I took a quick trip to visit my family in CA. I already told you how awesome the flights were (and really they weren’t so bad). But now to tell you a little about the trip… using pictures.
Sawyer was still on Utah time (which I expected) so he would wake up every morning at 5:30. He wasn’t thrilled with the idea of being cooped up in a room, so this DVD player saved the day (Thanks Williams family!)
Sawyer called home every chance he got.
We had to do some sharing… Sawyer LOVES sharing. Can’t you tell?
Future pianist… He INSISTED on sitting on the stool to play.
He really can be an excellent share..r…
We took naps, it was hot there (which is why this is the only outfit he ever wore)
We hung out with our super cool cousins.
Recently Cassie told me that she had still yet to see one of Sawyers tantrums. I realized most people probably haven’t seen one. It’s kinda funny to watch really. Here’s a little scene by scene on how it goes.
This cat is the last of my parents animals. He is great with the kids.
Grace is the best! She took care of Sawyer for me most of the time.
Sawyer and Meme hung out
Here’s what I will look like in 30 years and in 60 years.
Sawyer loves his grandpa.
We had a really good time visiting and playing. I forget how hot the heat is there and really I would have been fine just laying on beach all day in heat like that. Poor Sawyer is no where near getting used to it though. We missed our dad and were happy to come home to him
Saturday, September 7, 2013
It’s been 15 months and I have just been waiting for this to happen…
Sawyer has finally picked a toy he loves and wants to carry around with him. It’s darling! It’s precious! It’s a little girl baby doll…. We call her baby. He sits with her, walks with her, face plants because he’s too busy holding her with both hands. He gives her kisses and tries to put diapers on her. I tried to switch her out for a teddy bear, but that didn’t work. He just wanted baby. Seriously, the cutest thing ever. I don’t really even care that he loves a doll. I told Tyler I’d even bring the thing to church if it makes him happy and distracts him long enough to listen.
Sawyer had a bath today and first thing he did was throw baby in, luckily there wasn’t water in the tub yet.
Check out this cute picture of them both after the bath, he obviously missed her.
Sorry to everyone who is just dying for us to have another one of the worlds cutest children, this isn’t an announcement for that. And to put all your minds at rest, you wont be seeing that announcement for awhile My husband did get Leukemia and all…