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!

Life with Leukemia: A Yard Sale and a Hospital

All has been well the last couple of days. We are still adjusting. Tyler is still trying to figure out how to sleep.

Friday morning my darling pregnant well she isn't pregnant anymore! friend Lacey asked me to go to a yard sale with her. I LOVE yard sale shopping who am I kidding, I love ANY shopping so I got Sawyer ready to go and we left. This particular yard sale was in Highland, it was a friend of hers.

It was HUGE! There were a couple of families involved, always the best kind. Lacey's friend had tons of baby clothes so we searched through it for things for her new little girl and my big boy. And man are girls clothes cute!! As we are sifting through these peoples things I started to think I could want to live in Highland! It was such a pretty neighborhood, so clean. The houses were all amazing. I started to picture my life here. Then I started looking around and quickly realized I would NOT fit in here. It was 8am and here I am in my black yoga pants and a shirt I bought at Wal-Mart. I can't even remember if I brushed my hair, but I know I did not put makeup on but I wore sunglasses so no one would know the different right? And here are these highland folk... fully dressed in the trendiest clothes! Hair and makeup done! One girl was even wearing a fedora. I came to the realization I'm too lazy couture wise to be able to live and keep up with these girls. I love where I live too much to want to leave anyhow. And I am in no way saying the people I live with out here are not trendy or cute, they are just practical. Who wants to get up extra early to get done up for yard sales? Well, maybe some of you do... I don't know...Did I just offend people?

ANYWAY, as I am checking out, because yes they had a checkout line, I looked at my phone and saw that I missed a few calls from Ty. I hurry and call him back, this annoys Mr. Highland because how rude can I be? I didn't know how to explain to him that my husband has cancer and I HAVE to answer any and all phone calls that come from him, so I just said "sorry my husband is really sick". Tyler starts telling me that the chest pain that's been lingering is getting worse and he's concerned. Which of course, concerns me. We hurry and pay and start driving home.

Tyler calls again and says it's even worse! I told him I would be calling 911. He decided it wasn't THAT bad. Instead, I called nurse M and she told me to take him to the ER. I relayed that to Lacey, she works at our dr's office, and she said she would get us in there (which she did, bless her heart). Our neighbor brought Tyler to the office. The doctor there was so nice, he's up against Dr. D for kindest doc. He thought it could be a couple of things

1. A blood clot yikes!

or

2. Pleurisy (go here to learn what that is, but keep in mind Ty only had chest pain)

 

Tyler had a chest X-ray, which didn't show a whole lot so next step was a CT scan. We had to have that done at Timp. From that scan, they are sure it is pleurisy, but there isn't an infection or anything crazy, just a little swelling. We have had Tyler on ibuprofen and a heating pad (thanks Lexi) since and he is doing tons better. We are glad that it wasn't anything crazy!

I checked in with the ID team (Dr. W) as Ty was doing the scan and he assured me that this was exactly what we should be doing. And he was glad that we were taking action on the pain. Add another Doctor to the kind list!

Monday we have an appointment with Dr. W, already scheduled before this incident, and he will take a look at the x-rays and scan to double check them, but he was even sure, just from the sound of it, that it was pleurisy.

On another note:

We have been trying to find ways to help Tyler sleep better and longer. He still wakes up 2 or 3 times a night and it's wearing on him. If anyone has any ideas, we would love to hear them. We do plan on asking the docs on Monday, but he doesn't want to be relying on meds to sleep for the rest of his life.

Also:

Congrats to my friends and family Nisha and Adam, AJ and Lacey, Amanda and Jeff, and Allyson and Mickele on the birth of their darling baby girls! I wish I could steal them all and keep them as my own!!

Life with Leukemia: Follow Up to Mondays Post

Mondays appointment went smoothly, and faster then I expected it only took 3 hours, not 4. They did a basic work up of Ty; weight, height, blood work, exam... the usual stuff. We saw a couple of nurses, they all ask the same questions. Nurse M came and talked to us about Tyler's blood. The levels were ok. She felt like everything would be better once we started the meds. His spleen is shrinking and will hopefully be back to normal size by next visit.

Tyler was selected for drug P. The newer, stronger drug. Everyone seems thrilled that he got that drug (probably because it helps with their study a ton to have him on the new drug). But I do feel like they have our best interests at heart as well.

Then came the scary part... talking more about side effects! They told us a couple of big ones to watch out for and how they might present themselves. They also said it would happen within the first 48-72 hours.

We've slept poorly, no scratch that, we haven't slept... We go to bed worried about what will happen during the night. Every muscle twitch, itch, or pain causes seems scary. We are three days in now.

The first night was the worst, my husband isn't sure how to get out of bed quietly. Tues night, a little better except for the charlie horse he got in his calf, which obviously required a good yelp. Last night, once we fell asleep, I actually slept all night, and I'm pretty sure Tyler did too. Honestly, those two nights of sleep seemed worse then when Sawyer was a newborn. 

It's been an exhausting couple of days! Poor Sawyer... I've fallen asleep a couple of times while watching him play in his room. Luckily he's not too crazy and can stay out of trouble. Yesterday, he pulled blankets from a basket and put them on top of me. Whose little angel child is this??

Today we are both feeling abnormally well. Tyler told me his cancer must be gone, nice try husband.

 

Back to the appointment. After meeting with nurse M we then met with Dr. D. He is the kindest man. So soft spoken and calm. We really enjoy meeting with him. He thanked Tyler profusely for taking part in the study. Then we chatted some more about the actual drug and how things should go. Then he left, but not without giving Tyler a hug first!

We have to go back to Huntsman every Monday for the next month. Lots of follow up tests and things to have done.

We are so happy that we haven't had any crazy side effects so far. Hopefully it stays that way.

Tyler has been staying busy catching up with work and friends. It's great to see him back to normal, although I had hoped his cancer would somehow magically make him dislike the xbox... no luck! jk he rarely plays that thing.

His energy level is rising. We tried going for a walk the other night (did I mention this already?) and he made it a whole whopping block! He asks me to walk at a cancer pace. it's a work in progress.

I had a friend stop by who is pregnant and it was funny, and a little surreal, to listen to my husband and her compare maladies. Swollen feet, leg cramps, low energy, always hungry, ultra sounds and more I'm sure. I just had to laugh. There is some comfort in knowing that next time I'm pregnant he will have some extra sympathy for me.

\We joke a lot about using cancer as an excuse in life from now on. It's all jokes, he wouldn't really do that, or so I thought. I found a snake in the backyard a couple days ago. Today I asked him to help me pull a couple bushels of weeds so the stupid snake wouldn't be able to hide. He look at me and said "ohh umm you'll probably have to ask Jordan (our neighbor) to do that" I asked why and he said "well, I do have cancer". ohh brother.

11-12 months

This poor child. It's a good thing he is happy and independent. He's survived beautifully without his parents. He is lucky to have grandparents who love him and have taken great care of him.
In the last couple of months he has started walking and talking. It blows my mind!
He doesn't enjoy walking with shoes on, but will manage. If he goes barefoot he can pretty much get anywhere. He's started climbing too, we are in a whole new world of trouble. I still worry he may be a bit bow legged, but Tyler managed fine as a kiddo, so I know he will too.
He talks! Now that's the cutest thing that ever happened. He says Hi and Bye (they are basically the same word) and will give you a wave with it. He says momma and dad and daddy and dada... can you tell who he loves more? He sorta says thank you, dog, cheese (for the camera).
If you ask him for a kiss, you'll get one! Sometimes it's opened mouthed and those teeth are sharp! Speaking of teeth, He's getting a molar!! It makes for funny faces on his part and he tries to soothe it.
His hair is getting way too long and out of control, I know people are wondering when I will cut it, and eventually I'll get around to it.
He can give high fives, fist bumps, thumbs up, which is really a fist bump but looks like a thumbs up, and hugs.
He is a treat to have around. We have loved being home and spending time with him. He exhausts Tyler pretty quickly, but just this morning Ty let me sleep in while he played with Sawyer. He must be getting some energy back!
Yesterday we had some people come by to visit. I was feeding Sawyer in his highchair, in the kitchen. Tyler opened the front door and Sawyer started yelling, at the top of his lungs mind you, HI!!!! and waving. He stopped eating and insisted we go to the door so he could visit.
We went to Thanksgiving point with my parents last Friday. I was hoping for more excitement out of Sawyer, but he was only a little thrilled to be there. It was hot, and brilliant me decided we would go to the little farm area. He did yell at a cow, that was entertaining.
We took him on the pony rides. He was excited at first, we have a rocking horse at home, so he grabbed the saddle and started rocking back and forth.  That was all fine and dandy till the horse started moving. He practically jumped out of the saddle. We were that mom and baby duo trying our best to stay on the pony without getting stepped on. After a few rounds he warmed up and gave the crowd a couple WEEEEE's. so darling.
I wish I had tons more updates, but really I missed about a month of him growing and the rest is all blurred. I do have some darling pictures that I will upload once I take a friend advice and find an easier way to use blogger!

A little understanding (even if you can't REALLY understand) goes a long way

This video so perfectly describes what I was trying to explain in this post. I can see myself standing in all sorts of places those first few days with the heading "Just found out her husband has leukemia". Obviously, in a hospital it's easy to look at people and imagine something bad just happened, but you have to realize these people leave the hospital, and you see them on the streets, in the store, at church, everywhere! What would your heading say? What do you wish people REALLY knew about you and your struggles? Do you wish they could just SEE the wording and be able to understand you better?

Try and be just a little kinder today, be more understanding of the idea that everyone is going through something. And since we can't see inside peoples hearts look inside your own and find that compassion you want others to have for you.

Life with Leukemia: The Journey Begins

Today marks the start of our lifetime adventure of treating Tyler's CML. We have an appointment at 11:30. They will take more blood it's amazing that our bodies can give up so much blood, have another EKG, and then wait and wait while they work on getting us the medicine he will start. That may sound like a quick trip, but I'm estimating it will take at least 4 hours, maybe we can make bets on how long we will be there? We will bring things to entertain ourselves.

Big shout out to our babysitters who will be taking over now that my parents have left. It was nice having them here as we have had to go back twice already.

I had a grand plan this morning that I would get Sawyer up an hour earlier so he would take him morning nap at 8:00 instead of 9:00... it's 8:32 and he is most definitely NOT napping! He's in his bed, and is talking to his stuffed zebra. Probably telling it how dumb I am for thinking he would nap any sooner then 9. Oh well, I'll just have to wake him up early from his nap, that'll teach him to talk bad about me to his zebra.

 

It's been getting around and getting mixed up and we want everything to be very clear about what is happening, so let me explain.

Tyler is taking part in a study at the Huntsman center. It is NOT a trial, but a study. They are taking two of the medications that are commonly used to treat CML and comparing them against each other. One is the very first med that they developed the other is the most recent. I'll distinguish them with a G (being the older) and a P (being the newer). G is approved as a first line drug, meaning it is one they would give people first as treatment. P is approved as a second line, or G failure drug. Meaning if people don't react well enough to G (or a couple of other meds out there) they would switch them to P.

There are already people on P regularly. It has been through trials and other studies already, and for those of you that care, it is FDA approved.

The great things (and things that will ease anyone's mind) about this study are:

-both drugs are FDA approved

-both treat CML

-we will know which drug he is given

-we can drop out of the study at ANY time

-our doctor can pull us out of the study at ANY time

-The risks associated with the study are the same we would be facing either way because he would most likely end up on these drugs at some point

-the risk/side effects are NOT as scary as I would have thought, and are all manageable, and may not even happen.

-Tyler will receive extra treatment and monitoring at no cost to us

speaking of COST

-the meds are free as long as we are on the study

And the best part

-Tyler will be helping these doctors better the treatment for CML

We are ever so grateful for those who have participated in trials and studies (some which may have had way more risks) before us. Because of them, Tyler's CML can be treated and he can live a normal life. We really feel like this trial (the one of having cancer, not the one at huntsman :) ) has been given to us as a way to help serve and bless others. Tyler wanted me to share this study info with all of you. He feels like the more we share, the more people we can touch and help.

We feel very safe and comfortable doing this study. We have prayed and know that our Heavenly Father will put Tyler on the medication that is best for him. Please feel free to join us in these prayers this morning as we wait to see which drug he is put on, you're welcome to pray that Sawyer will nap too.

After today we will be going back to Huntsman pretty frequently over the next month (so if anyone feels like they need a Sawyer fix, just let us know!) for lots of follow ups! It will mostly include blood tests. Every 6 months Ty will get a bone marrow biopsy, which we will dread, but handle.

Life can get moving forward for us, just as it is all of you. We are optimistic and excited about our future.

 

Life with Leukemia: Back to normal (some what normal) life

So night two at home was MUCH better! It may have been that we were finally settled in, it may have been the prayers, it may have been the oxycodone... Either way, we will take it! Wednesday was definitely slower for us. We slept a ton! we do a lot of that. I went with my parents and Sawyer to check out Scheels. He really liked the fish tank and he was mesmerized by the Ferris wheel, but I'm no dummy, he would have lost it had I tried to take him on it.

We picked up a toy compound bow for Tyler, thinking it would be a fun gift, but it really was made for a little kid. Which I should have guessed front the picture of the 5 yr old on the box. I had high hopes...  So we will take it back and look for another fun toy.

Tyler decided to try to take another call. He did just one and said that was enough. I know he misses it. weirdo.

We got a call from the dr's office. Ty's platelets were super high and his red blood cells (There's another word for that... hemo-goblin.. jk  but really something like that) are low. So they asked us to come back in Thursday. They must know how much I miss the place. Ty had a friend come visit that night (wed). He loves seeing everyone! We were brought another delicious dinner. It was a good day.

 

Thursday we got up bright and early and drove up to Huntsman. It was a quicker visit. They drew labs and we waited to hear what his numbers were. In the meantime the nurse came out. We talked about Ty's lung biopsy, which showed........ absolutely NOTHING!

This guys body...

Dr.D thinks the fevers could really be attributed to his CML. I guess we will never really know, and that's ok because he's better now.

His numbers came back and were a little better. Thank goodness. If things had changed too much he would have needed a transfusion, which would mean coming in on Friday.
They did tell us that his platelets were in the 1 mil range and should only be about 200,000. What an overachiever.

This appointment I noticed 4 couples sitting in the waiting room with us. They were all around our age. Who knew cancer hit so many young people?

We came home and... you guessed it, napped again! Tyler woke up before me and went to do some work. I eventually got up and got ready to go to girls camp. OH I'm so glad I went! I was able to be there to hear from our stake presidency, eat dinner, and have a testimony meeting with my girls. They are amazing YW! I'm sad I missed the week of awesome activities they had. I loved hearing their testimonies and sharing mine with them. I think my most favorite part had to be just getting there. The leaders hadn't told them I was coming. It's always a great feeling to see people get excited when they realize you've showed up!

I reluctantly left around 11:30 and made the trip home. I hate mountain roads a night, can someone please tell the deer to go to sleep when it gets dark and NOT come out for midnight snacks! I did make it home safely though.