Friday was Monday

We got out of the hospital Tuesday night and so  Wednesday and Thurs felt like the weekend and Friday felt just like a Monday (sadly) in every way. We had to drag ourselves out of bed early to be in Seattle for long appointments and blood work and then went straight to radiation. We didn't get home until close to 1pm we were both worn out. Elizabeth's a little more worn down each day...more tired from the cumulative effect of radiation and chemo and still fighting to eat enough to keep her as healthy as possible. Dave and the kids just arrived for the weekend and we are elated to be together for a few days!

Sick and tired (but thankful) and ready to go home...

After many phone calls and much coordination between the proton center and the team here at Seattle children's all day yesterday, the radiation machine was back up and running and we were able to get Elizabeth over to treatment at 9:30pm last night. We opted to do this because we're only 15 min from the radiation clinic when we're at the hospital and, more importantly, it means that we didn't have to add a day on at the end of her currently scheduled treatment plan. We're so thankful they got us in!! (Hopefully all the machines and software can cooperate for the next 3 weeks.🙏 ) It was dark and quiet at that hour in the hospital, but there was a flow of people in and out of the radiation center as people were eager to  get their treatment scheduled for the day. We met a family with a 6 yr old girl from Montana there last night. We were really happy today when everything was on schedule. Elizabeth was able to get over to radiation at the 11:30 (her regular time) and was back in the hospital around 12:15pm. They got her chemo started right away and she's done with that now. We're still here getting post chemo meds until around 9:30/10pm and then we'll head home. As usual, Elizabeth feels much worse today. She's generally pretty sick on her last day of 5 day chemo and this time has been no different. The poor girl has been soo sick this afternoon. We both eager to get home and get her comfortable soon!

Hoping for proton therapy today

Last week I learned that a few times a month the proton machine needs to be adjusted to make sure it's totally precise and sometimes that means they have to delay proton radiation for part or all of the day. It turns out that today was one of those days.  We had planned to leave Seattle children's hospital at 11am for radiation in north Seattle, but then I got a call early this morning that the radiation machine needed adjustment today and so we are just waiting now. We have chemo from 4:30-7:30pm today and I am praying they call back and have the machine up and running and that we can find a way to work radiation in today somehow. If they can't fit it in today then we just add another day to the end of our scheduled days. I have wondered if maybe this is a little better for Elizabeth though. She hasn't had to do radiation and chemo at the same time yet and her nausea has been up and down. It's been tricky learning all over again how to control it with the med combinations they use here, but thankfully she hasn't thrown up since the first day. She has been able to generally to eat a little of each meal. She's doing physical therapy right now and the PT room here has a wall of windows that look over a beautiful little garden. It's too cold to go outside, but it's sunny and the view is nice. Elizabeth was pretty dizzy at the start of PT, (side effect of her meds and laying in bed) but she got over that in the first 10 minutes as she took things slowly and now she's doing some strengthing exercises. We'll see what the day brings! 

Back to chemo

We had a very long day of clinic visits yesterday. We got lots of good info about how to address some of the side effects of Elizabeth's chemo drugs once she's all done with her scheduled treatments (which should be in late April or early May) and she also made chemo counts, so we are back in the hospital today. We did radiation and then headed over to Seattle children's hospital. Poor Elizabeth has been sicker than usual. 

So close...

Elizabeth barely missed chemo counts today. Her platelets were just a little too low, so she will go back on Thurs to be retested and hopefully start chemo Friday.  We're both worn out from a long day of being at the hospital clinic and radiation. I'm thankful for the sunshine that we've had lately!

Best friends

Elizabeth's best friend, Ava, flew up last night with her mom to stay with Elizabeth for this long weekend. Grandma got a new cart and the girls were the first to try it out. It was lots of fun!! Ava also got to ride a horse for the first time. Having Ava here with Elizabeth has been the BEST! 

The last few days were crazy busy! We've had multiple visits (pretty daily) to Seattle between the hospital and radiation for treatments and lab draws and physical therapy and doctor appointments. Lots of ups and downs through all of it, but we found out this morning that it looks like her blood levels are recovering now (instead of dropping still) and we're hopeful that they will continue to recover so she can do chemo on Wednesday. She is currently scheduled to do 5 day chemo Wed-Sun and that it would be a huge blessing to be able to keep her on that schedule because she won't have to go to radiation on Saturday and Sunday of her part 2 days of chemo, which is when she feels the worst. For now, we're going to enjoy a wonderful weekend with friends! Hope you all enjoy a long weekend as well! Thanks for the continuous prayers! We love you and feel your support. We are keeping you all in our prayers! 🙏 ❤ 

SO many good things

So many good things today! For one, we didn't have to go to Seattle for any Dr appointments. Yay! It was a lovely, sunny day and Elizabeth got to ride Josie. She muscled her way up the saddle with no assistance at all! (Other than having the horse held for her;) 

She had a really enjoyable walk around the streets surrounding my parent's home. 

Our amazing friends in Chicago saved Dave and the kids in Utah last night with a surprise dinner pizza delivery. Thank you Larsons! It was especially wonderful timing because Dave was tied up with a late work project and the kids were cheered up and fully fed with the unexpected food showing up right when everyone was getting hangry. It made me so happy to hear about this today!

Another amazing thing happened...a generous stranger gave our family a donation when they learned of Elizabeth's cancer. Elizabeth has a friend at school that went through cancer in 7th grade. She told a woman at a salon today about Elizabeth and our family and this woman just decided to contribute money to our family to help us get through this difficult time. I was moved to tears (again) because of the kindness of this individual and the collective goodness of all who know us doing so much to support our family and Elizabeth at this time. 

Happy Friday!

It really was a happy Friday! We didn't have radiation until 11:30am today, so I had time to sleep in, read, and go on a little run before I had to head to Seattle. The proton radiation center had Elizabeth in and out in no time...seriously...like 20 minutes...and we had a really fun afternoon! We went to pick up a paint project from Paint Away, walked outside (yes! Elizabeth walked with her crutches) around Redmond Town Center and grabbed some yummy treats from a French bakery. I'm so proud of how well Elizabeth's doing with her walking! This was her first outing without the wheelchair. I know it wore her out a bit, but she's so tough and slowly getting stronger. It's exciting to see! Here is Elizabeth working on her art project:

We'll take it back in to have finished in the kiln at Paint Away once she's done. (I love seeing her look so natural in her wig!) Elizabeth's also pushing her way through the lingering nausea from chemo. I asked her how she was feeling around dinner time and she said she's felt sick all day, but she does NOT complain!  I told her I can't decide if she's tough or crazy for declining around-the-clock nausea meds her first days back home from chemo. She hates taking so many meds and she's got enough being forced on her and so I don't force optional meds if she really doesn't want to take them. Ooohh...I forgot to mention that Dave's cousins sent Elizabeth an awesome care package here to Woodinville that she was able to open right when she got home from the hospital. She's enjoying everything they sent...especially the new Hydro flask and Burts bees chap stick. Thank you Skousens!!! Happy weekend to everyone! Thank you for the prayers, as always! We are being blessed in countless ways!

Halfway through chemo! Started proton therapy...

I saw this sign posted at the proton center. I loved it and wanted to share!

Elizabeth is officially halfway done with chemo! (We count the halfway point by number of treatments, not by date, so hopefully she doesn't fall too far behind on her blood counts regularly and we can be done close to May.) She's so happy to be back at grandma's house! She's currently having fun hanging out with her cousin that lives nearby.  

Elizabeth started proton radiation today and it went perfectly. (Thank you for the prayers!) She was greeted at the proton center with a bag containing her hospital gown and a new robe and slippers. She changed and I was able to walk in with her to the treatment room. Her custom bed was all ready to go on the table. She climbed up on the bed/table and I waited outside during duirng the actual procedure. (The machine looks very similar to an MRI machine.) The radiation itself is painless and took about 10 minutes. The only discomfort Elizabeth's expected to experience is irritation similar to a sunburn on her back at the site of radiation (which is L1-L5) after a few weeks of treatment. Our goal now is to keep her as healthy and strong as possible to tolerate treatment and be ready for 5 day chemo on Jam 20th.

"Last minute" way of life

I was warned that a lot of the treatments would be scheduled and even adjusted pretty last minute during our stay in Seattle and they weren't kidding...that's exactly how it started off. We came Jan 3rd because we were told that radiation started Jan 4th, but got an email the evening of the 3rd from the proton radiation center informing us that radiation would start "later this week." I will admit I was confused and disappointed, but we met with our new Dr that's going to be taking care of us yesterday at Seattle children's and we really liked him. He explained that the medical team here doesn't like to start radiation on the same day as her 2 day chemo, even though some places do that, and so we'll start on Thursday. It's too much to elaborate on all that he explained to me, but I feel like this adjustment in the plan is the best thing after talking with him. Elizabeth's just starting chemo in Seattle children's hospital right now. This hospital has been great so far. The floor we're on is fairly new, and so it's waaayyy nicer than the rooms that we're used to in SLC. We miss the rest of our family, but love being with my parents and brother's family. Thank you, again, and, as always, for the prayers and support. We feel the the comfort and strength of our Savior with us. We pray for you. We love you!

Sunny in Seattle

It was very, very sad to leave home this morning and we are already trying to figure out how soon Dave can bring the rest of the family up. I've never been so grateful for video chat! It was a busy travel day at the airport a few that made for tiring travel. Elizabeth and I landed in Seattle and were pleasantly surprised to find the sun shining. It was wonderful to climb in my mom's car and come home to a delicious home made dinner and to be able to visit with my brother and his family. Such an incredible blessing! Elizabeth continues to make good progress on walking. Horray! We have a busy week of chemo and radiation ahead and so I am heading to bed. ;)