Life with Leukemia: Or is it?

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.

Life with Leukemia: A Spoon Full of Sugar

Remember how last update I said nothing new had happened. Sometimes I wonder how much of what I say causes the next event… A day or two after that post we got a call from the clinic. They told Tyler to reduce his dose of the meds. Not a big deal really. A few days later our nurse called at 7AM mind you to tell Tyler that the study was ending and he was to stop taking the pills.
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!

I Guess You Had to be There

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.

Like with Leukemia: No News is Good News

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

26 things that I am usually embarrassed by, but today thought I would share

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

California In August

 

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

It’s a girl!

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…

Life with Leukemia: Old people sense of humor

Monday we went to Huntsman to have some labs drawn then over to U of U for a visit with the ID doctors. It should have been quick, but for whatever reason still took 3 hours…ish. We have a routine when we get to the Huntsman clinic. I always sit in the same chair while Tyler goes to check in. On that day however someone had turned the hallway into a wind tunnel. Literally my hair was blowing. I made Tyler sit inside the clinic (there are only a few chairs inside, the rest are in the hallway). As we waited I did what I love to do best at these visits. I people watched, and I wasn’t disappointed with the crowd. I listened to a nurse telling her co-workers about how she can feel her baby kick at night, awwww. I noticed a new girl behind the desk checking people in and was thoroughly impressed with how fast she was for being so new. It made me miss working, then I stopped missing working and went back to watching. I listened as a old man came in and by the look of his warm welcome he is obviously a regular. He got tons of hugs! As he waited his turn he turned to the new girl and said:

Old man “I like your beads” she was wearing a pearl necklace with lots of strands

New girl “thanks!”

Pause…

Old man “Did you get them in New Orleans?”

Then he gave himself an I’m pretty funny chuckle and went back to reading his newspaper. HILARIOUS. People with cancer have a different lease on life. I’ve loved watching how they can be less reserved. Did I write about the lady wearing a cape last visit? No inhibitions. And why would they? When your told you have a disease that can end your life early you definitely learn to let go.

Also while we waited a lady came up with a snack cart full of yummy treats (oreos, granola bars real ones not even store brand, sun chips) and some beverages.

At the U hospital we got in pretty quickly. The tech here offered us more snacks, but really all the had was an assortment of crackers which didn’t stop Tyler. Not the same. We met with Dr. W and H. They both agreed that he would stop taking the antibacterial medicine. They checked the results of Tyler’s blood work from that morning. His platelets were just a little lower then last time, but they think these antibacterials are probably causing some of that. They gave us a run down of what happens with low platelets, which we already knew, Tyler tried to make a funny joke about avoiding razors, that didn’t go over well a joke is never great if you have to explain it.

Tyler’s numbers:

You already know the platelets were still low

WBC: 6.2 or maybe 6.5…  I don’t remember

Potassium… great

Everything else…. normal!

So pretty much he’s normal. Well… I mean… you know. The ID doc was talking about how even though his WBC is normal there are still bad cells in there, but it’s not affecting him much.

We didn’t run into any moaners, screamers, or scary people this trip. It was pleasant.

Plane Ride Do’s and Don’ts

This last week Sawyer and I made a quick trip out to California to visit my grandma. I was missing her and my family was missing Sawyer so it benefited us all.
Our only obstacle would be the actual getting there part. I could have driven, but, I have some sort of chronic sleep while driving disorder and would have fallen asleep by Payson, and I love Payson and all but we wouldn’t have made it there so we flew. Between the flight there and back I came up with a pretty comprehensive list of flying tips and tricks that will benefit you all.
DO:
Remember to fill up all Sippy cups once inside the security gate so your child can promptly spill them
Bring string cheese
Dress your child in warm pants, planes are cold
Bring a change of clothes so once everything has spilled on them you can put fresh clothes on and no one will know
Deal with AMAZING gate peeps who will purposefully find you a row with an empty seat, even if it is by the toilet
Be grateful for that empty seat, and the two on the other side of the aisle
Thank each and every person who compliments you, you know they mean it otherwise they wouldn’t say it
Smile and be kind to others around you then when your child loses all control they will like you better. The saying kill them with kindness really applies here
If you have to sit next to someone (like I did on my return flight) let it be a kind mother of 5 who is taking her last son to BYU. She will be amazing and will even help with the screaming kid. And eventually she will ask to be moved but only for your benefit so you have more space to wrangle in your crazy overtired baby.
Stand up when your child loses control!
Bounce them like crazy and eventually they will fall asleep
Bring lots of toys, food, drinks, movies, books, beaded necklaces and a blanket
Remove child’s shoes before attempting to take off pants to change diaper
Sit next to a bathroom that actually doesn’t smell
Let your child pull out each and every magazine, barf bag, and safety instructions pamphlet
DO NOT:
Drop your child’s diaper on the floor, you know… the messy ones
Wipe the food you’ve spilled off the seat and then look at the wipe
Look at the cleaning wipe, after your child has just licked the seat
Show your child where the button to turn the light on. Even more so if they aren’t tall enough to reach it on their own, my arms were exhausted
Feed your child yellow fruit snacks
React to your child’s fake cough, it will turn into fake choke and people think you’re being abusive.
Bring a scratched DVD, kids don’t have that kind of patience
Think that just because you’re flying during nap time your child will sleep
Hand a mad baby a squeeze food packet
Try and hold down your angry toddle, it’s better to let them kick and scream
Think you can actually fly with a 15 month old on your lap by yourself
Try and take blog notes while flying solo with a 15 month old… he will rip them out of your hands

We obviously survived both flights. The first was ten times easier then the second. And once he fell asleep on the way back it was fine. The Benadryl probably helped a ton. I wont ever fly alone with that sweet angel baby again.
Our trip was good. Sawyer did weasel his way into bed with me all 3 nights. That is something I do NOT ever do. My resolve to not let him in was only strengthened. If you think Sawyer is busy when he’s awake you should see him sleep. That kid moves soooo much! He was completely on my face at one point. BUT it is scary for him to wake up in the middle on the night in a new place. And the small cuddles I did get were nice.
It was hot there as usual, but we took advantage of my moms little swimming pool and the fact that babies can run around in just a diaper.
Tyler survived the 4 days alone. He actually worked a ton and stayed pretty busy. He also managed to clean the entire house before we got home. What a dream!
Here’s some pictures from the trip!

Let's chat about these in order from left to right…
1. Sawyer loved the DVD, until it skipped. And those headphones worked awesome
2. Sawyer driving his new sports car at the mall
3. The truck at Emilys house. Notice the nakedness.
4. Living it up in his own seat.
5. More nakedness.
6. Dear people of CA, I know your style is different then here in Utah, and I can respect that, but PLEASE do not wear Disney themed leggings, tight dresses, or short skirts. There is a reason these are one sale.

Life with Leukemia: Angels All Around Us

We had family home evening on Monday night with a few neighbors. I was horribly unprepared, which was embarrassing because we invited some new neighbors to join and I know they couldn’t have been very impressed. Instead of planning my lesson that night I was preparing for the next few years of motherhood as I watched my sweet angel baby throw many many tantrums. You would all be impressed at his perfection in tantrum throwing. I guess the saying practice makes perfect can really apply to anything.
Since I was so unprepared I turned to the scriptures and looked for a marked one. I figure if I marked it, there has to be something I can learn from it which really what scripture can’t you learn from? I ended up using Mosiah 2:41.

And moreover, I would desire that ye should consider on the blessed and happy state of those that keep the commandments of God. For behold, they are blessed in all things, both temporal and spiritual; and if they hold out faithful to the end they are received into heaven, that thereby they may dwell with God in a state of never-ending happiness. O remember, remember that these things are true; for the Lord God hath spoken it.

This verse got us talking about blessings and of course I rambled on about our hospital stay, I’m like a return missionary just off the plane, it’s as if nothing else has EVER happened to me Talking about the hospital made us think of Doctor J, which got me thinking of Channing Tatum… you only know why if you met him. Dr. J was an angel sent to us. One we did not see coming, but who was there for us the moment we would need him. We are thankful for him.
Speaking of rambling… lets see if I can actually get my thoughts together enough to write this blog post
Dr. J… Angels…Thankful.. Watch this video:

Elder Holland… you know you want to hear what he says.

side note: there was a link on the LDS.org website for this video so I could share it through IM… Do people still IM?
Gratitude. We recently found ourselves feeling a bit lacking in ways to show our gratitude for people like Dr. J and other angels around us. After some talking and Tyler listening we decided the best way we can show it is through action. I love that at the end of this clip Elder Holland encourages us to be angels as we pray for ones of our own. If I’m praying for angels I know others are too and who am I to think the Lord wouldn’t use me to answer another's prayer? You don’t have to be LDS to understand what is he talking about, or to follow his counsel.
I know this post got spiritual fast, don't tell my bishop but I’m hoping a couple of these will count as a sacrament talk you can tell him that part and I can avoid being asked leave that part out  And if I do get asked, I’ll probably just read a few blogs posts.

Life with Leukemia: Count my many blessings

I wanted to write a very elegant post about all of the many blessings that we have experienced these last 2 months, but it was an overwhelming thought so instead, here is a very unorganized not elegant list. Also, just mentally add the word awesome to the front of most because in some spots it wont make sense of these items, that way I don’t seem redundant using it over and over.

• Huntsman
• Nurses
• Doctors
• Modern medicine
• Hospital visitors
• Yummy treats
• Hospital pizza
• Family
• Friends
• All the service we received
• Priesthood blessings
• A clean home
• A safe place for Sawyer
• Humor
• Insurance
• Art
• Games
• Music
• Babysitters
• Healthy days
• Healed stomachs
• Sleep
• Renewed energy
• Generous co-workers
• Meals
• The Spirit
• Peace and comfort
• Dr. D
• Quick recovery
• Social media
• More friends and neighbors

I could go on but my brain is a little on the fried side these days and I feel like that was all it could out put at this time. In the end we want everyone to know how great this experience has been. The blessings have completely out weighed the trials and to be honest we are having a hard time finding the… well.. the hard times. These days we feel so loved and happy we can only be grateful.

HEALTH UPDATE: Tyler promised Dr. D that he would be his number one patient and it seems as if he’s holding up his end of the deal. At his appointment on Monday his numbers all looked great. His WBC is at 7… yes you read that right, 7. For those of you with better brains then mine you will remember that when we went into the hospital his WBC was 99. If you're wondering if this drug is working, the answer is YES. Their only concern was some low platelets, but it’s nothing too worrisome and we will just check it again in 2 weeks. The rest of his numbers… normal and perfect. like his wife.

SIDE NOTE: I really do think there is a red flag on my name at the pharmacy. Once again I go to get a prescription (this time for Sawyer) and once again I decline speaking to the pharmacist and ONCE AGAIN he comes to talk to me anyways… sir, I know how to give my child one teaspoon of this pink stuff twice a day. I promise to refrigerate it. Maybe I need to look less drug dealer-ish when I go to Wal-Mart

Bucket List

Tyler was telling me a story yesterday about a man who found out he had a terminal illness. He quickly cashed in all his investments and bought a boat… or something like that… and traveled the world. He lived his life to the fullest. Only to find out a couple years later that he had beat the illness and would continue to live. I think he was in his 50’s. Now he’s in a big battle with the IRS because along with liquidating all his money, he decided not to pay taxes on any of it…. whoops.
His story got us talking about bucket lists and what we would do if we knew we only had a year or so to live. Ty is way simpler then I am. He says he’d quit work and just hang out at home. He also said he’d pray and read his scriptures a lot… always so righteous. I on the other hand think I would want to do big things. Problem is I don’t know what any of those big things are.
We realized that neither of us really have a bucket list. Not that either of us plan on kicking the bucket any time soon, but it would be fun to have SOMETHING on our list. I haven’t told Tyler yet, but I am planning a family meeting where we will come up with some ideas for our lists.
I plan on living a long life and dying of old age in my sleep. This list will be more of a fun things to do while I’m young and raising kids. I guess it can span into retirement too, I would hate to get bored in my old age. I love making to do lists, I know some people throw those out as they create new lives for themselves, but I LOVE crossing things off my list. I am excited to make this new big list for me and my fam. Help us make our bucket list! What are some things on yours?
A quick update on Tyler, since that’s why everyone is reading this. He’s doing and feeling great this week. Sleeping really well. He is now in charge of Sawyer in the mornings while I workout and clean. It’s a bigger responsibility then working haha. I picked up a refill of the anitbac prescription that the ID team has him taking. The girl at the Walmart pharmacy asked if I had any questions for the pharmacist which is standard I said no, but she went and got him anyway maybe she didn’t hear me? Walmart is pretty loud. He, seeming very concerned, asked:

“Has Robert that’s his real name taken these pills before’
“Yep”
“This dose?” he takes 6 a day
“Yep”
“I’ve never filled a prescription for this amount…”
“Ya… guess they are just hitting him hard with the meds”
“I see, What does he have?”
“…umm…. they don’t know…well, Leukemia but.. obviously that’s not what these are for…you see he had a fever for 2 weeks and the day he took this pill it went away, so he’s still taking them…”
“oh…”

I am officially red flagged as a drug dealer at the Walmart by my home.
We are still just getting explanations of benefits from our insurance, we’ve only seen one bill so far, but as I was reading through all the EOB’s I noticed that not only do they charge per procedure, and day, but they charge for each and every doctor that visits you. And here I was just thinking they enjoyed checking in on us all the time!
Sawyer is STILL teething, I’ve looked in his mouth and it seems like it will be teething torture time for the next month at least. We are working on diversions to distract him from throwing tantrums. He wont eat or drink when upset, I tried teething tablets, I ended up wearing them. He really likes taking Tylenol should I be worried? Sometimes we just have to let him lay on the floor and roll around screaming, one of us has to keep our sanity, and since Sawyer is being unreasonable, it’s going to be me. Next step is given him a frozen teething ring.
More on Sawyer. He just keeps getting smarter. He’s figured out that even though I hide candy under a blanket, it is still there. He knows that his high chair tray is two parts and enjoys taking off the top part to throw on the floor it is especially fun if there’s pasta with red sauce on it. He knows exactly which cabinets are not baby proof and which ones have the dog treats in them. He knows that a tissue coming towards him only means one thing. He can cross the street in no time flat. If he puts his arms up at you and smiles he knows you’ll pick him up, doesn’t matter who you are. He’s pretty sure every square object with buttons is a cell phone, and the only person he could possibly call is daddy. All toys in the loft need to be thrown down stairs. Coins belong in his mouth and my drivers license under the couch, not in my wallet. Books should be pulled off the shelf, covers ripped and pages bent. And lastly, he knows, even if he’s napping, the sound of the front door opening means its time to wake up! When did my baby get so smart?

Picture update

Our view from the Huntsman room.

The IV pole, they told us we could name it, but we never got that close to it.

Swollen feet anyone?

Our view from the U of U.

Ordering room service, Tyler’s favorite part of the day.

The needles used for the bone marrow biopsy

An artist is born.

We have lift off.

.

Our favorite visitor.

Our favorite nurse showing us how long the picc line was.

He looked way too good to be a cancer patient.

Going home!

Life with Leukemia: Weekend Update

Who doesn’t love a family photo from the hospital?

A whole week has gone by, a whole normal week. Mondays Doctors appointment went well. Dr. D was actually out of the country so we met with a new lady. She was extremely sweet and helpful. They took more blood that day. We asked nurse M about the results from the blood work (from Friday and that day). They hadn't actually received Fridays work, but what they had just taken looked great. His WBC was at 20 something, down from 44. Potassium also down. He can go back to eating bananas, which is a good thing since he is convinced that will prevent Charley horses.

Oh Charley horses... wondering where that term comes from? So is everyone else, I found THIS and learned a bit about them.

I digress, Charley horses.

Do you have ANY idea how terrifying it can be to wake up at 2 AM to your husband who has cancer and is taking medication with side effects of all kinds screaming in pain?? I do, it's very uncool. Thankfully it was only a leg cramp. It took a second maybe a few for me to figure it out. I gave him the best advice that I could, and then went back to sleep one of us has to be awake enough to take care of this kid of ours. JK I stayed awake till it was over HOW was I supposed to sleep through the screaming? Poor guy didn't ever go back to sleep for fear it may happen again. Instead he did some Google research on CH's and read his scriptures.

Note to self: read scriptures before bed, so as to not receive a painful leg reminded in the middle of the night.

But truly honestly I am the WORST at night. THE WORST. No, not just at night, anytime I am woken out of a deep sleep, ok not just a deep sleep, any sleep.  Don't believe me, come visit me in the middle of the night, or during a nap for that matter. I should wear a shirt when I sleep that apologizes for my attitude if woken up. And when things happen at night my husband not only has to suffer his afflictions, but has to suffer my wrath as well. Therefore, I think it is always better if I just fall back asleep instead of trying to help, because my help usually turns into bitter torture of some kind. It's annoying for all parties involved.

Want to know something else annoying? Being on a pill your life depends on and forgetting it at your moms house. haha Tyler had to drive back home to his moms last night to pick up his pills he left there. I'm glad Ty can drive on his own.

The second side affect although I'm not really sure it's a side affect is Tyler's appetite. Now he's never been a bird when it comes to eating, but many of you know he does have issues with some foods and eating too much food. And knock on wood, it seems as if things are better in that area. So since he's healed for the time being why not pig out??? Tyler will go back for second and usually thirds of whatever we are eating. Despite what it may seem upon first glance he's actually not getting skinnier. As a matter of fact he's getting bigger! But just in his stomach of course. Case and point: he came out of the bathroom last night and said

" I know why I can't fast tomorrow"

we had been discussing whether or not he should participate in fast Sunday with his meds and all

Me: "Why?"

Tyler: "Because I'm pregnant" pulls up his shirt and put his hand on his stomach.

Other then that, life really is normal. The new normal.

Tyler has been working. I have been playing with Sawyer.

Yesterday Ty laid sod all morning and wasn't dying! We went to the temple that afternoon. I took Sawyer for a walk at night with my neighbor while Tyler finished up his lesson for church.

Speaking of Sawyer, since the adults in this house keep getting more boring lets talk about him for a second.

I've successfully taught him 4 1/2 REAL words! I even taped him saying them since he refuses perform in public :) He will clearly say mama, dada, cheese, more and nana. The problem with more is that he thinks it means food. Before he has even eaten he wants more, while he's eating he wants more, after he's done and sees you go to eat something he then wants more.

Eat much?

He may not speak to you, but chances are he will blow the most darling kiss you way! and who can resist a kiss from that cutie? Do I say that every time?

Today I am grateful for my neighbor across the street who humors my in my night time craziness. Something happens to me after 11:30PM and she seems to witness it more often then not and will still talk to me that next day.

Life with Leukemia: Weekend Update

Dr. H from the ID team called Tyler on Thursday. Tyler is always so witty. When she said who it was calling he responded with "Hey! I hope you're calling because you have good news for me" They never call with good news.

But! It wasn't terrible news either. His numbers were just off from Mondays blood work. his WBC (white blood count, remember that for the future) has risen and his potassium levels are high. Nothing too crazy, but they had us go to our doctor down here for some more blood test just to recheck, of course they wont get the labs until tomorrow when we go in anyways... so I think we wasted that office's time...

Other then that we are the same. Tyler was exhausted from our relaxing trip to Fillmore so he slept pretty well.

He has been able to work all his calls and attend all his church meetings, plus the ones I make him go to!

His brother on a mission claims his letters are less exciting now that Ty is out of the hospital and I have to agree, life is pretty boring these days. But we will take it.

Tonight we went to a trek wrap up fireside. It was great. I really enjoyed my trek experience and the growth that I gained from it. Looking back I see the Lord's hand in getting me to and through trek. I wasn't initially invited to trek.

I assumed I was going, but they had enough people and didn't need me. Also, I'm sure they knew my husband wouldn't go no not because he has cancer, but because he does not enjoy camping.

So I wasn't going.

While on a trip with my Laurels to Salt Lake the sister in charge of trek randomly, or so it seemed, invited me to go. It caught me off guard. I told her I would talk to Tyler and let her know. Knowing all along I would say yes, I asked Tyler if he minded then let her know I would be going. I was thrilled, but a little nervous about attending without my husband. I tried guilting him into going many times, however Tyler will NOT be swayed by peer pressure of any kind... ever. Just ask him.

June came and at 5 am in the morning I was walking to the stake center with Lexi and Jordan. It was a 6 hour drive to Martins Cove, a drive I was dreading. It turned out to be the fastest car ride of my life. Thanks to the great company I had.

We were all given names of people to trek for. Mine was a single woman. Fitting. And as I trekked I could feel the sorrow she must have felt being alone as she walked so many miles. It was painful to watch the other couples support and comfort each other. for reals, it was three days and I'm just a huge baby, but I felt it! I felt the courage she would have had to have during our womens pull and the sadness she would have felt when the men would return and celebrate being reunited with their wives. I felt the loneliness she must have known as I walked the trail without a hand to hold. I considered her alone feelings at night, but I slept on an air mattress with Lex so I was fine then. I also felt her strength as I realized that I could do hard things. I could push forward and have faith that this was for my good. I could find the amazing blessings along the way, like square dancing with my youth, bonding with these awesome YW and YM that I serve, making new friends and strengthening relationships with adults in my ward. I could have a positive attitude and help lift others. I enjoyed trek, and I realize it more each time I think about it.

But tonight as I sat in the fireside I saw trek for what it really was for me.

 It was preparation, the Lord knows our paths, HE KNEW what I was coming home to. No more than two weeks later did Tyler get sick. I was still on my "I appreciate my husband because I missed him so much" high and was willing to do any and all things for him. Then one week later he was diagnosed with Leukemia. And that's when I had to remember I CAN DO HARD THINGS. I know this because I told it to my youth in my testimony, and I told them they could too. Of course once I put it out there it had to be tested right?

I can't let myself down. I need to know I can do it. I want to be strengthened by our trials. 

I will forever be grateful for the trek leader who followed whatever prompting she had to invite me to trek, she can now write down a 22nd miracle on her list.

Again, looking back I see the small miracles that prepped us for this new life of ours and I'm glad we were ready.

 

Fillmore Family Fun

Tonight I'll probably need to write up a couple of blogs in order to get all my thoughts out into cyberspace, because who doesn't want the people of the internet knowing their thoughts?

I love having and being a friend. It is something that gives me joy. I'm social and enjoy interacting and connecting with other people. Sometimes I think it drives my husband nuts because I constantly want to go visit people or be out of house chatting with neighbors and I like have him with me in case the convo stalls, which is rare... So when we moved into this neighborhood it was basically my social life's dream! I am surrounded by fabulous people who I could talk to all day, and night sometimes.

We have made some great friends here. One set of fabulous friends that we have is Lexi and Jordan. If you know us, you know them. I could go on and on about our friendship, but that's not the main purpose of this post, otherwise I would have named it "Our Fabulous Friends Lexi and Jordan", but I didn't so lets talk Fillmore.

Lexi's brother and sis-in-law live in Fillmore, UT. The halfway point from here to St. George. They are some more fabulous people! We have stayed at their house once before on our way to SG. Krista is an amazing cook and Riley tells awesome stories about his super cool job.

It's taking me way to long to get to this story...

Krista throws a family fun weekend in Fillmore for her and Riley's families. And since I'm the kind of friend who adopts themselves into your families, we too were invited. We couldn't go for the whole weekend so we went for the day on Saturday. Thank goodness we did!!! We never really told them we would come. It's always better this way. I know people are way happier to see us when it's a surprise.

Our time there started with an intense Fear Factor game. By the end Tyler was covered in chocolate pudding, I had learned how to tie a tie... barely, I learned that I'm no good at running out from under tables I have bruises and scrapes, and probably some video footage to prove it, and everyone was a winner. Seriously, so fun!

Next we went swimming at their local swimming pool. Sawyer LOVES pools now! Can I get an AMEN!? He enjoyed every second of swimming while his pop enjoyed a nap on the lawn.

We headed over to the skate park, only to get drenched on by some sort of torrential rain fall. Don't worry, I (Jordan) only left one window open in the Lexus when I had parked it.

A delicious dutch oven dinner was prepared for us and as we waited for it to cook I spent time with Lexi's parents and a sibling in their trailer. There's nothing I love more then watching that family interact.

After dinner we dressed in our best disco outfits and went roller skating, which I am terrible at and shouldn't even attempt. Tyler enjoyed from the sidelines and was slowing running out of steam, but in true Corinne fashion I convinced him to hold out a bit longer. Or at least until our kiddo lost it, because at that point I'm always finished.

We headed home that evening wiped out from the funnest day in Fillmore we have ever had.
HUGE thanks to Krista and Riley for inviting us down. We will be back soon!

Life with Leukemia: Late night update...may not make sense

Thank you to everyone who reads this and is following our life. I appreciate all the compliments I have been given in regards to the blog.
Monday we went back to the ID clinic at the U hospital to have Tyler's follow up appointment. We brought with us the CT scan and X-rays from Friday because heaven knows Tyler has been blasted with enough radiation for awhile.

Tyler hasn't been in the lobby of the University of Utah hospital (I went down once to see Sawyer while we stayed there). They have all sorts of clinics and doctors offices there, it's what some of the doctors referred to as a melting pot hospital. As you walk in you are lured into a false sense of security from the sounds of a young girl playing a piano, it seems serene and inviting... don't let that girl fool you. This place is a REAL hospital, where people with REAL SERIOUS injuries go. In the front entry alone I saw people missing limbs, covered in burns, hooked to IV's, riding in wheel chairs and wrapped in bandages. It is not for the faint of heart.

So I warned Tyler, because sometimes he's a little faint of heart, of what to expect from the hospital and the hospital did not make a liar of me! It all started with a man blowing his second hand smoke at us as we made our way out of the parking lot, sir, my husband has leukemia, please don't give him lung cancer as well. We made a mental note to take advantage of the free valet parking next time. Once inside being serenated by some chopsticks we made our way back to the ID clinic and checked in to see Dr. W. He remembered us from our stay at Huntsman.

He and the nurse who brought us back both apologized for the "confused and upset" woman in the room next to us. I'm not sure why she was there, but I can tell you she was NOT happy about it. There was a lot of noise coming from her room remind anyone of our last time there? and it honestly made me feel bad for her. Dr. W explained that they see a lot of mentally ill patients as well as homeless people. so that explains that.

After seeing the scans Dr. W and Dr. H both came in to tell us that the mystery nodules Ty developed in the hospital were almost gone! Victory. They are convinced his pleurisy is nothing extreme and can continue to be managed by taking ibuprofen if he needs it. I love both of those doctors. You know how I feel about kind people, they are both VERY kind.

We finished off the appointment with the custom blood draw and headed home.

We are always starving after the appointments and I was wanting to try out some tacos and Café Rio. We got some the tacos, I made an excellent choice getting those, and headed back to our car.

Now look, I'm not used to this Salt Lake way of life. There are people walking everywhere! That is something about big cities that I find incredible. People walk all over the place. As I'm starting up my car, and making a phone call, I wondered what this  blonde hustler lady standing outside my car window was doing. She looked like she had something to say to us... She finally knocks on the window and proceeds to petition us for some money for gas. I'm such a push over. We did end of giving her some cash, because maybe she really did need it, if she didn't, that's on her. However, we may not stop for food in SLC again though, or I may not roll down my car windows while in SLC or ever.

Tyler is still working on finding a good sleep regimen, it seems to be improving, that may seem that way because I'm sleeping through the night though...

Ever since finding out Tyler had Leukemia, I've become very aware of all things cancer I'm pretty sure there is a term for this, I tried asking Tyler tonight, but he fell asleep before he could answer...at least he's sleeping. I hear ads on the radio, see commercials, see videos online, and find articles that relate to us. Just today I read an article in the Ensign that sounded a lot like the experiences Tyler is having, you can go here to read it. On a side note, I also read this article and realized I may need to tone down my sarcasm... dang it.

Something else that's been on my mind recently is the process we will go through to have Tyler typed and matched for a bone marrow transplant. He does NOT need one as of now, but they get all the matching out of the way so if there ever was a time, heaven forbid it gets that bad, it is a quick process. We will go in sometime next month with his siblings to get the process started. If they aren't matches the search begins. You wouldn't believe how hard it can be for some people to find a match. There is a movement, well a website but I feel like it's a movement, at bethematch.com. It's a donor registry for bone marrow. If I am not a match for Tyler I plan on becoming a donor.

I can save a life.

You can too.

People are always saying they wish there was a cure for cancer, for people with blood cancer this can be it.

LASTLY I know this is way too long I went to Zumba this morning. Tyler put Sawyer down for his morning nap while I was there. It was AMAZING! I forgot how much I enjoy Zumba. The instructor was a delight. I am so out of shape it's hilarious. And for some insane reason it was almost emotional for me. To push my body past the point of hurt was something I seriously needed. Have

you ever cried doing Zumba? Me neither... but I was dang close. I tried to explain it to Ty, but couldn't so I'll spare you the jumbled description, just know I plan on being there every Wednesday morning. And if you see me crying, pretend you didn't.

Happy Pioneer Day!
P.S. Beware that Tyler is just itching to post his version of this trip to SLC on the blog. It will be full of big words that I couldn't understand well enough to add into my own version. Glad his brain is still functioning at full speed, wish mine was!