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!

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.

Life with Leukemia: Home Sweet Home

Yesterday morning, after spending 16 days in the hospital, our doctors told us that Tyler could go home! They wanted to see his final blood tests results and such, but that didn't stop me from packing up my things. We spent a lot of time chatting with our sweet nurse about what to expect at home and all sorts of other things. Tyler showered and ate. The nurse came in and pulled out his picc line! That was cool to watch. I took a picture of it, and once I get to uploading them you can see how long it was. The last 30 mins seemed to drag on, but eventually we had gotten our meds, signed the paperwork, and found a way to carry all 7 bags of belongings we had collected, you'd think I had lived there months! They had Tyler wheeled out in a wheelchair.

As we left all the nurses said their goodbyes and there girl pushing us asked how long we had been there, because everyone seemed to know us. I explained Tylers charming ways to her. jk jk, I think the fact that we were some of the youngest people there and some of the least sick, in comparison, it was easier to have conversations with us. And tyler really did turn on the charm.

It was a bittersweet moment, leaving, but we are happy to be home.

We came home to a happy baby boy awaiting our arrival. Our house had been cleaned from top to bottom, our laundry done, and food was being brought in. What more could we ask for?! Thank you to everyone who took a part in that! It was a relief not to come home to the house I left two weeks ago, picture a tornado aftermath.

People had decorated our driveway and porch. There were sweet notes written on hearts all over the house.

We were thrilled to be home!

 

Tyler had a hard nights sleep. I'm not sure he slept much at all. I know I didn't.

The day went better. Sawyer was so excited to see my face this morning.

Our follow-up that was supposed to be Wed, got changed to today. After taking some extra time to shower, so these people would know that I have another hair style then messy bun, and Tyler taking time to shove his very bloated feet into his shoes. (at one point at the hospital I couldn't help but laughing as I walked behind him. His poor feet) We headed back up at 11 and didn't get home till around 5. We had to sign more paperwork and Tyler had a few more labs to do. We LOVE the new nurse that we will be working with. She is great and really put us at ease.

As we waited for the lab peeps, a guy walked up that we recognized. I did a double take and remembered him as the guy who sold us our bedroom furniture a few months ago! He recognized us, but it was as we were going in so we didn't get to chat, but what a small world!

I love how happy all the employees are.

We swung by the pharmacy real quick to see if one more of Ty's meds had come in. It had, but they wanted $1000 for a 12 day supply! Our nurse jumped right on that and is taking care of it.

After, we went back to the 4th floor (our home) to ask the nurses a quick question. We got to say goodbye to a few nurses that we hadn't yesterday. Again, I love how they love us, or at least how they pretend to ;)

Our room is already filled, a little sad about that.

In true Tyler fashion, Tyler worked for an hour tonight. He called the guy that has been subbing for him and asked if he could take the call back. His people were happy he was back! He was so happy when the hour was up. I know of no one who loves there job like my husband, I think he's a little insane.

We went for a little walk tonight and chatted with a few neighbors. It's nice to be back to normal. Tyler is looking forward to catching up with everyone!

If your in the neighborhood, check in! We might just be up for a visit :)

Tyler will start his actual Leukemia meds on Monday. Until then lets all pray I can keep his other ones straight.

Here's to a better nights sleep and a slower day tomorrow.

Life with Leukemia: Slow Sunday

We haven't had too much going on as of late. Our days are so much slower then they were originally. BUT! Tyler is feeling better, and that's all that matters. Today is day three of no fevers as of yet today and we are hoping they don't ever come back, like ever (exactly ike T-Swifts song this is our breakup with fevers)! We should get some more results tomorrow from the biopsy. But the Drs are happy with how Tyler is magically healing himself.

 If all keeps going well with Tyler they will be able to send us home and we will be able to move forward. Moving forward meaning, taking meds and starting the new chapter in our lives. Tyler is excited to sleep in his own bed, eat food I cook him that's not really true, work, workout with his bro, and just be normal again.

Tyler is still pretty tired. Things we do on a daily basis that don't even phase us, wear him out! I feel like that's to be expected with how exhausting these last three weeks have been.

The nurse just asked him if he's walking, to which responded "ya, I walk a lot".

A lot in Tyler terms = 2 laps around our unit a day

See what I mean...

We went to church again today. We were a little late and missed the sacrament. No big deal, after we listened to two testimonies they ended and blessed the sacrament again for us.

Bishop: I would like to institute second sacrament in our ward! I would never miss again! ;)

After church we came down and took our Sunday naps, which lasted two hours!

Now, our room gets cleaned and Tyler is working up the energy to move from his bed to his chair. There he will draw, he has become a real artist! We figure that can always be his backup plan if he ever needs one.

Life with Leukemia: Biopsy De Jour

Tyler didn't end up getting his biopsy, you know, the one where they stick his lung with a needle, until 2:30 which was fine, it's not like he was starving or anything... No, but really he was a good sport about it. We got to visit with my parents and Sawyer. We love seeing that little boy. He loves his daddy! He always gives Tyler the biggest hugs and kisses. He is walking and talking even more, it only makes him more darling, if that's even possible. He loves to wave at all the people walking by. He met the sweet social worker here and gave her his best head tilt-shy face. He doesn't love shoes. But he's a boy and he'll learn.

When they FINALLY came and got Ty, they wheeled him away, bed and all. He said the procedure wasn't bad. He was under conscious sedation, so he kind of knew what was going on, but can hardly remember it.

I watched some TV and ordered lunch, because what kind of wife would I have been to eat in front of him right? When he came back in he was pretty coherent. His breathing was better then it had been in the morning. He had a bandage on his chest and was covered in iodine residue. Overall he felt good. He did say it felt like someone had punched him in the chest ya, well it's not everyday you get a needle stuck in your lungs sweetheart.

He's such a good sport about all of this. The doctors today even commented on his good attitude and how they appreciated it. They said most people get really frustrated at this point and get mean. We feel blessed because that really hasn't even crossed our minds yet. We feel like Heavenly Father is bringing us peace and comfort daily.

And let me tell you, I can get annoyed pretty easy, like when I'm driving, or waiting in line at the grocery store, or waiting on hold... you get the idea. But when it comes to the road rage, I usually take it upon myself to tell them how I feel about it. Which brings me to a lesson I've learned while going through this all.

As we drove to Huntsman two short weeks ago I drove fast, safe, but fast. I just knew that if I got pulled over I had a good excuse. I mean why wouldn't, "I'm sorry officer my husband just found out he has cancer and we are headed to the hospital" work? It's the ultimate excuse!

Any way so after thinking about that a little I wondered, how many times have I been cut off or something by someone who was really just driving in a daze because they just found out their husband has cancer? Or some other crazy life changing event. I have since vowed to be a less angry cuz I can't commit fully driver and try to remember the day I had to drive like a crazy person, did I say crazy person? I meant calm, fast driver... to get my husband to a hospital.

This experience is definitely teaching us patience in so many ways and it's amazing because I always knew, one day, when I had a life changing lesson I would FEEL it!  I knew it would be something tangible that I would totally recognize as a huge change in me.

But it's not like that...

It just is.

I just am.

Shows what I really know.

I appreciate the people who have helped us see it, by pointing it out, otherwise I might have missed it.

 

Back from my tangent,

 

We really are on an episode of House now no joke I've seen the whiteboard! We meet with three different teams, Oncology, Infectious Disease, and Pulmonary, each day who are trying their hardest to figure out what the heck is happening in my husbands body! We know they will get it, and in the mean time we are on our best behavior so they don't send us back to the U :) I'm kidding I'm kidding... Kind of

So Tyler has felt well since this afternoon. They did take him down for a chest x-ray that showed all was well at the point where they stuck the needle in. We haven't heard if there is more fluid buildup around his lungs, but know we will be asking about that first thing tomorrow. For now he is in a drug induced sleep :)

Best part of the day has to be that he did NOT get a fever all day!!! I guess there is still a couple hours left, but I'm feeling confident he wont just in case, if you will all knock on some wood that may help.

I am also doing great, because I know you are wondering. I took a nap when Tyler came back from his procedure. Waiting around eating and watching TV is rough on me. No one let me complain about being tired when I get home. I nap all the time!! In my defense it does take me till about midnight to fall asleep and then I'm woken up by 6 or 7.

Life with Leukemia: Quick Update

We had a fabulous nights sleep. Tyler had to stop eating at midnight again.

They are doing a biopsy on the spots that are in his lungs. Basically, a needle into his lung to collect a sample. He will be sedated again.

He's hungry and tired.

We don't have much else. They think they may have found something in the fluid from the Bronch, but I will wait to here more from the doctor before I talk about it.

Life with Leukemia: There's no place like Huntsman

Remember back in my first post when I thought we would be home last Tuesday?
This morning Dr. E came in to visit us. He was hopeful we would get the TB results back today. He said he was from New York and in NY the labs probably wouldn't work on a holiday. We prayed they would!

Dr. C came in later to let us know the results were in and Tyler was negative for TB! woo woo! Thank goodness!! About an hour later we were wheeling back into Huntsman. I wont lie I got a little teary eyed seeing our nurses and aides standing up to welcome us back. We are back in the exact same room and we quickly ordered food.

After settling in, doing laundry and dropping off a bag of things into our car that we don't need cluttering our room like the hairdryer I cant use, Tyler laid down for a nap. In walked the intern and Dr. Pool... I was not looking forward to seeing him, but just like everything has been with this experience a miracle happened! Not only was he pleasant, he was helpful! He answered a question I asked by literally drawing me a picture, showing me on Tyler what he was talking about and just explaining ii in a way I totally understood. He even thanked us for bringing up new things to help them come up with more ideas.... WHAT!?! haha we were shocked. He is not the same man we left the other day. He must have missed us and decided to be on his best behavior.

Or he found my blog... in either case, we are Pool fans!

We really missed this place and even though we aren't home with our Sawyer, we are much more comfortable and happy.

Our nurse told us about all the awesome spots to sit and see the fireworks tonight, so we have something to look forward to. I never thought I'd spend a 4th in a hospital.

I'm sitting here typing this wrapped in a warmed blanket hoping we get to go home soon. We miss normal life.

Life with Leukemia: Visit to the Bronchs

After many prayers we experienced a miracle this morning. The pulmonologist came in and told us they WOULD do the bronchoscopy today. PHEW! At first they were thinking they would do the procedure at 12, Tyler quickly asked for them to consider doing it earlier. The next pulmonologist to come in (around 9:30) said they would do it at 10! Hallelujah. In the next 10 mins they came and took him away.

The procedure only took about 30 mins, but prep and other wait times meant Tyler was gone for about 3 hours. I got antsy and kept asking the nurses to check in. I found out they had taken him back to Huntsman for the surgery, wish I had know I would have gone along! He came back at about 12:45ish feeling pretty gross but not loopy to my dismay.

They did a wash of his lungs doesn't that sound pleasant. Basically they squirt in salt water and then suck it out like a day at the beach. But, he was left with some still there so he was coughing a ton. His breathing took a step back today as he recovered from the procedure. The Pulmo, Dr. B came in to check on Ty. She says the way he feels is normal and talked about all the tests they will run of the stuff they pulled out.

He's napped some and got yet another fever, probably one of his highest (but they told him to expect this). His breathing is sounding better now. Dr. E says we should know by late tomorrow morning the results on the TB and if all goes well we can be headed back to Huntsman!

We are really doing ok here at the U. Tyler is a nurse charmer and they all love him. We find many ways to laugh, like every time his bed takes flight Tyler announces it's lift off time.

We haven't figured out why it makes the noise is does, but it is loud and gets louder, then slows down. The wall behind it will rattle at the same time. Hilarious.

We've slept really well here. I even napped during the day and through Tyler's many convos with the nurses.

They are not as strict about me using the bathroom in the room which is a nice blessing. The "family bathroom" here is way more public and occupied then at the Huntsman. So I was able to just shower in the room.

Our spirits are high and we are finding plenty of ways to occupy our time like by watching American Greed and learning how to execute a perfect Ponzi scheme.

I had a little anxiety today about not moving forward with things, you know like cancer treatment, and all sorts of silly things. But, my friends know me well and I received a FABULOUS gift from a friend that made my day!

Here's to hoping that tomorrow we move forward.

Life with Leukemia: From Taj mahal to Holiday Inn

So more updates!

Our ID doctor came in and told us they wanted to test Tyler for TB. A more comprehensive test then just the skin prick, no big deal. He would just have to do some flem testing a few times a day, no big deal. We may have to switch rooms, no big deal. They aren't really convinced that he has it so we aren't too worried.

Fast forward an hour and our aide walks in with a mask on while we are playing card games. Instantly I joke with her and asked if we are being quarantined. She looks at me funny, then I ask why she's wearing the mask. She asked if the doctors have talked to me, uhh no. So I ask her what is going on. She looks like a deer in the headlights and backs out of the room and says "I'll be right back, I'll go get someone to talk to you." WHAT?!?!? 

Our most favorite nurse C comes in, also wearing a mask, and sits down with us. She asks if they Dr explained about the TB, yep he did. Ok great she says well then he told you that you would have to switch to the U hospital right... uhh no. (no one tell Hilary and Rustys kids, they might come try and break us out for fear we will become Ute fans)  but ok, no big deal.

Tyler was pretty bummed. C has done a lot to help us feel comfortable and taken care of and we have grown to love her, We even shed a few tears. So she talked us through what would happen and how they needed us in a negative pressure room so the air from our room doesn't filter out into the other patients rooms in case there is TB. understandable.

So we quickly packed up, you wouldn't believe the stuff I have here, and we were wheeled through some tunnels to the U.That's when it hit us.

This is a big deal!

First of all, it's definitely not as nice as Huntsman. Big deal. It smells weird. Big deal. We asked for the menu and they laughed, food is made three times a day and unless you have food restrictions you will eat what they make, when they make it. Big deal. The bedside table is sticky. gross. My bed/couch has some seriously unexplained stains on it and the walls rattle every five seconds.

I could go on.

They laugh because they can tell we are a bit shell shocked.

The second BIG shocker was we were under the impression that we would be here a day and half then we would get to return to the palace. lie. This doctor here says the test has to be done over a span of three days. So we are here till Friday at the latest.

We laugh because we know it's a test. We know it will help us grow. We know that miracles happen and can happen here in this hospital. We know we were spoiled. We know that by being here, we don't have to see Dr. Pool for a few days:). We know amazing Dr's work here just like at Huntsman. And we know this wont last.

There is better cell service here and I'm pretty sure we will have an awesome view of some fireworks come Thursday night. The nurses went out of their to find us food, and get us settled.

We are hoping for huge blessings from this place and to be back to our home at Huntsman (we miss our nurses terribly already) and our real home soon.

p.s. please realize sarcasm is how I cope and I truly am grateful for an opportunity for Tyler to get better.

Life with Leukemia: Saturday Night Fever

Update 7/7/13: I made reference to Dr. P in this post. It seems that he was made aware haha. Which is actually a good thing because it was something I could see was affecting Tyler and I didn't want to have that happen. Since then he has been amazing to us and we appreciate his willingness to change to meet our needs. We are grateful for each and every Dr working on our case.

more like every night fever...

Every day around 4 or 5 Tyler spikes a fever. They measure it in Celcius here so if he hits 38.5  they will instantly bring Tyler ice packs and tylenol (or a cooling blanket). It has happened so frequently (at least once a day for the last 3 weeks) that Tyler can tell you when he feels it coming. He will get the chills and call the nurse in for the treatment. He has even gotten to the point where he can guess his temp as they take it. And he usually guesses right the nurses love that. Unfortunately, no one can figure out why he gets them... But we know they will.

He also gets a cough on and off. It starts as shortness of breath and turns into a cough. It usually perks up right as the dr. will ask if he's been coughing dang Dr. S. They are attributing that to some nogles they have found on his lungs, and have grown, since he has been here. The guess is that there is some type of fungus that is reactiving due to Tylers compromised immune system ummm what?! Insane right? So, the Infection Disease (ID for short) doctors just came in as I am typing and said tomorrow they will do one of two tests.

 1. Stick a tube with a camera down into his lungs and do a wash to test the junk in there.

2. Stick a needle into his lung from the outside and get a sample.

Ummm they both sound awful to me... Poor Tyler.

Speaking of this needle into his lungs... so this is a teaching hospital and the doctors rotate around once a month or so. Lucky us, we came in the week everyone is switching. So there's this new doctor like day 2 new named Dr. P.  He came in before rounds to check on Ty. Oh man he has the worst bedside manner EVER! He told Tyler some mumbo jumbo about how they can't send him home because he has some 30% chance of dying.... what?!?!? Who says that stuff? Oh man, anyways after he spews this nonsense he looks at his lil reminder paper and then back tracks with more nonsense. It was really just as hard to follow what he was saying as that last sentence was. 

THEN he comes in with the 6 billion doctors on rounds (just like in all Dr shows they do rounds) and Dr. G who we really enjoy, shes a small lady with a big brain is kindly telling Tyler about the above mentioned procedures and we are feeling informed about it. She mentions the needle and Tyler asked if it was very big. Dr. G says no, but Dr. P jumps in with "No it's pretty big" again WHAT?! Oh and that there will be no meds, just a stick to bite on and some jack daniels or some acholic beverage to numb the pain... this guy.

 We have decided that instead of complaining about him, we will just make fun of him behind his back (and I'm only kind of kidding about that). So ya, not a huge fan of Dr. P, which is a shame because I LOVE swimming.

UPDATE: Sweet little intern M just came in and said they will do the scope, official name is Bronchoscopy if you google that you WILL see a video of the inside of a person. Tyler won't be allowed to eat after midnight, which surpringly enough he has been. Last night he got up and some a homemade granola bar (thanks Lisa) in the middle of the night.
They will sedate him for the procedure, which puts him at ease.
I will video tape him once he is back in the room because I KNOW it will be worth watching later.
Tyler is doing awesome though and we really want everyone to focus their thoughts and energy on that. He can do everything for himself! Eat, drink, shower - the works. We are up and walking more. I love that the nurses here are getting to know us and will cheer him on as we walk laps. He sits in a chair instead of in his bed he did get a lecture from one of the dr's about staying the bed too much lol.
We had a wonderful visit from his mission president. He and his wife are so in tune with the spirit and have so much faith. We got a lot of great insight from them and more strength to go forward with faith.
We continue to be amazed at the love we feel from family and friends. We appreciate all your comments sent through facebook and we appreciate your prayers. Tyler asked me to ask you to pray that the doctors will find the source of his infection and cough so that we can go HOME!
p.s. why is blogspot so lame? I have 7 fonts to choose from and they all look like this.