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.