Best therapy!

Elizabeth has finally arrived at that 'sweet spot' where she's far enough out from chemo and not too close to her next round of chemo that she can relax and enjoy life for a minute. This is our chance to hit the therapy hard...hopefully we can. We got off to a great start today! Elizabeth rode our horse, Autumn. I wasn't sure how she was goin to get up, or even if Autumn would hold still well enough for Elizabeth to make the climb up the saddle, (Autumn is a sweet, well behaved horse, but she's not a therapy trained) but it went perfectly!! Yay! 

Elizabeth had the idea to get from her wheelchair to a barrel and then up to the saddle. Not exactly horse vaulting, but it was wonderful to see her up on a horse again. 

She was worn out after only a short time riding, but it's progress. Her progress walking is coming along, slowly, but coming. She gets muscle cramps that are frustrating and painful. This is a more recent thing and hopefully it is a passing phase, similar to the nerve pain, that she can work through. We had a wonderful time tonight at our family Halloween party. Thank you to the kind friends and neighbors that left us gift baskets and snacks and cozy things for Elizabeth! (Some of you give anonymously, so thank you!!)

Short and not sweet

Well, the good news is that we're back home already. We did our two days of chemo and only had to spend one night at the hospital and we were driving home by 4pm today. That was great! I was very encouraged because we had to stay an extra day on her last chemo round and I sort of assumed that would happen again. Elizabeth felt fairly well on our drive home, but, sadly, she's miserable now. They added a chemo drug that they omitted on her last 2 day chemo treatment and it's making her nausea much worse. She slept for several hours and now we're working to get her comfortable so that she can go back to sleep. Even though having IV meds is a perk to being in the hospital, it's soo much better for her to be at home with her own bed and her sweet dog, Max, that loves her so much. 

Good days, new plans, more chemo

Elizabeth's had a pretty good last 5 days and was able to practice walking and spent lots of time painting. She did some fall pictures in watercolor and one on canvas. (Thanks Ella and Alanna!)  Even though she felt good last Thursday, her blood counts remained so low that I was worried that she would have to delay chemo for a week. Thankfully, the daily shots she gets finally kicked in and her blood levels looked great by Sunday. Sunday afternoon she was able to enjoy great family time with Grandparents, uncles, aunt, and darling baby cousin. My favorite was watching her plays games around the table with her dad, uncle and siblings. She told me that she had a really fun day that evening. (Thank you amazing family! We love you!) Yesterday morning we had to get her up early for her radiologist appointment at the Huntsman Cancer Hospital and hospital admission for chemo. We learned at our appointment yesterday that the radiologist thinks that proton radiation is the best option for treatment on her spine. They don't have this option in Utah, so he's consulting with a proton radiation doctor in a nearby state that he's worked with extensively to see if this doctor agrees.  We should find out next week if we will be getting some treatment out of state. (I'll fill in the details once we know more.) The radiologist would like to do 6 weeks of radiation therapy for her spine from mid December until the end of January (during chemo) and then she'll get the lung radiation treatment for 2 weeks once chemo is complete. They use photon radiation on the lungs and we will for sure be getting that at the Huntsman. After the radiology appointment, we checked in at primary children's hospital. She was much more hydrated than on her last admission (yay!) and this is critical to the chemo treatment and means that she didn't have to wait hours for them to run IV fluids before starting treatment. Having her port accessed is still very stressful for her and I hope this improves. Her nausea control has improved, as we've learned a lot about what works for her, and they kept her nausea under control yesterday. She's got one more chemo treatment around 2pm today and then we should be good to head home close to dinner time. Good friends are keeping my family at home well fed, having my kids over to play, and running them to their various lessons and to and from school so Dave can continue to work. Thank you wonderful people!! I've said it before and I will keep saying it...we couldn't do this without your prayers and support!! Love you all💕

Without words

On Oct 21 we received the most amazing gift from the people in our ward. Some friends brought over a 'gift card bouquet' that the ward had contributed to. As we began to look through the basket in the evening we were completely overwhelmed by the amount contributed. 'Grateful' seems to be insufficient to describe it. This, in addition to continuous outpouring of love, support, prayers, acts of service, gift baskets, visits, texts and phone calls (this list goes on and on...), has really left me without words. It means so much! So, again, thank you everyone!!

On another, deeply sad, note, there was another event on Oct 21 that left me without words. We found out that our neighbor Collin Kartchner had passed away in his sleep. He was only 40 years old and left behind a beautiful family, including his wife and 4 kids the ages of Elizabeth to Michael. If you have a child in Utah, you've probably heard of Collin. If you have teens, you've also most likely attended or heard about his platform and presentations. If you don't know who he is or what he's accomplished, go to his website and read about it. It is phenomenal! #SavetheKids - Helping Teens Rise Above Social Media Negativity – #SaveTheKids

https://savethekids.us/ 

I would like to kindly ask you to please include the Kartchner family in your prayers. If you'd like to maybe even consider helping with a small contribution to his family, here's the site.

Collin Kartchner Memorial Fund

https://www.gofundme.com/f/collin-kartchner-memorial-fund

(Sorry that my computer skills are limited and you'll have to just copy and paste these site links)

Elizabeth's had a great day today! She's finally got her pain under control and has been doing her physical therapy and walking a few steps each day since Wednesday. Her blood counts are still extremely low and we are hoping they rebound sufficiently by Sunday so that they don't have to delay her chemo. Her wig of her (and Natalie's) hair also arrived! She looks so cute in it! Unfortunately, she's requested that I don't post a picture of her in it...sorry...maybe she'll change her mind in a few days 😊🤞

Home days

I just realized that it has been 5 days since I last posted. We have been so busy with all the good and bad that our circumstances bring. The good things include wonderful visits from family and friends, fun movie time and family games when Elizabeth feels well, yummy food (homemade and brought to us) and SLEEP! On the other hand, it has been a lot of continuous challenges trying to keep on top of all Elizabeth’s discomfort...from nausea, to stomach pain, nerve pain, insomnia, and discouragement. The worst has been the nerve pain.  Her nerves seem to be “waking up” essentially in the order she lost them, but it’s been extremely painful and occurs unpredictably. We just got new pain meds today to help manage it and she usually has a good few hours each day though, which is a blessing. The physical therapist came this morning, and we were both so impressed with what Elizabeth was able to do! She has her leg braces now and she was able to slowly walk across the entire living room and kitchen with her leg braces stabilizing her ankles and using a walker. Yay!

Hair and nails

Elizabeth was feeling well enough to let me do her nails today. It was our first time using a nail stamping kit (a gift from friends...thx!!) and it turned out pretty good for our first try. After that Elizabeth asked me to shave the rest of her hair off because it was driving her crazy as it fell out. She's already gotten lots of cute hats that she's started wearing. It will be fun to get her halo wig and hopefully it's ready next week. We're done with chemo for the day and we have one round left tomorrow morning. Unfortunately, we have to stay for several hours after chemo to run IV fluids. We might stay Friday night as well. We'll see! Elizabeth also briefly stood all with her walker (and and no other help) during physical therapy today. Very exciting! I'd say this is the best hospital day Elizabeth's had yet. 😊

Better

Three days chemo down and Elizabeth is doing so much better than she was when I last wrote. Thank you for the prayers!! We've had to do a lot of trial and error with the nausea meds and it seems like we're pretty close to figuring out what works best for Elizabeth, so hopefully we can get it all sorted out and avoid miserable nausea next time she's here getting chemo. We can't eliminate it totally, but we can get her comfortable enough to be able to relax and eat. Yesterday morning we had a small fiasco with Elizabeth's IV tubing malfunctioning and the poor girl woke up with her back covered in IV fluid and blood😝 just a little blood, thankfully, but such a mess a so miserable to get her changed and comfortable and all of her personal pillows and blanket washed.  She worked briefly with PT and OT using her new leg braces and was able to stand up briefly using a walker and support. She just worked on marching in place a few times and even though it was a challenge, she pushed through. She is so tough! We already knew that, but it's even more impressive now than ever before. We enjoyed really nice evenings Tues and Wed with Dave coming up for dinner and it felt almost normal....eating, laughing, watching shows together. I feel so grateful for these moments. Elizabeth's just starting her day off eating breakfast. She'll get chemo at 1:45pm today. 

So sick

There are 2 chemo drugs Elizabeth will get each day this week. (Mon-Fri) They ran fluid for several hours yesterday (to minimize bladder damage from the chemotherapy) and started the meds around 10pm. She was soo sick😔 Even with all the nausea meds they gave, she was so uncomfortable that she barely slept. Thankfully, she was able to sleep most of the day today. Physical therapy delivered her leg support braces this afternoon, but she was too sick and tired to do the physical therapy. The leg braces will help her stand and assist her as she gets back to walking, so hopefully she'll be feeling better overall soon and be able to start using them. The doctors have added 2 new meds today and 2 for this evening to help control her nausea. They seem to be helping so far because she was able to eat some breakfast food for dinner. YAY! Today's chemo is infusing as I write this...prayers for a better night!🙏

A wonderful break

We enjoyed wonderful time at home last week and the weekend was filled with visits from loved ones. It was exactly what we needed, especially Elizabeth. She was able to just hang out and do some normal teenager things for a few days.  Friends and family sent and delivered gift baskets, cards, flowers, and goodies. We were overwhelmed. Again, thank you! Thank you also for all the prayers that she would be able to get home!! It was such a blessing.  We’re back at Primary Children’s for the week now. If everything goes well, she gets to go home on Friday. She was very stressed about having her port accessed and it has been abnormally tender, but it went really well today. Yay! It seems like it’s healed a bit and they had better numbing cream than they used last time. Right now she’s getting fluids in preparation for her chemo, which they will run in the next hour or so. We have a giant basket of great stuff (from all of you!) to keep Elizabeth happily busy during this week at the hospital.  I’m praying that her treatments are fully effective and that she can remain cancer free in the years to come, as this is the biggest challenge with this type of cancer. Elizabeth’s movement continues to very slowly improve each day. Today she was able to move her left ankle!

All in a day

Yesterday started with braces off! Normally this is a much more exciting happening, but the braces are just 'on hold' until chemo is done. Still, we're grateful to have them off and help make Elizabeth as comfortable as possible during treatment. We grabbed some of Elizabeth's favorite foods and then headed out to visit with Autumn, our horse. Autumn was more than happy to stand by Elizabeth and get her face brushed and eat treats for as long as she could. We had a little rest at home and then back to ortho for a retainer fit. We enjoyed some little visits from neighbors and pizza brought by a friend. In the evening (very late) Elizabeth decided it was time to cut her hair. She had an appointment with a friend to cut it Saturday, but it was coming out more quickly than we had anticipated. We already had plans to send 10in of her own hair for a halo wig...soooo... around midnight, we cut it off. It was so impulsive that we laughed all the way through it. I didn't do the best job on the hair, but we got all the 10in pony tails we needed and today our hair dresser friend cleaned it up and she's got a very cute, short little bob. Natalie was eager to contribute her hair to the halo wig and their hair color is pretty similar, so she cut 10in off hers today and we sent all the hair in right away. (Looking forward to the wig of my girl's hair!) The days feel  busy and we're constantly grateful for all the love and support from all of you❤

Natalie after her hair cut

Elizabeth and Autumn

Bevan and Devon

The nurse we had on Sunday night in the hospital was awesome and assured us that she would get us home ASAP. She walked us through everything that we would need to do immediately Monday morning (getting home health in place, calling insurance, having meds ordered, supplies delivered, etc.) and we got to it first thing.  I was talking to so many people to get everything in place the entire day Monday that I felt like I barely had time to pay attention to Elizabeth. My head was spinning...school coordinators, pharmacy, insurance, case managers from oncology and rehab…and I was still working on all of the meds as we were driving home at 7pm. The meds were soo stressful! This post is my big thank you to Bevan and Devon in pharmacy. Bevan went way above and beyond in getting Elizabeth’s meds set up. There is a specific shot that Elizabeth needs that insurance companies don’t like to pay for outside of the hospital. When I found this out Monday late morning, one of the case managers told me that I was going to need to drive Elizabeth back up to Primary Children’s every day this week for this shot (which is 2 hours out of the very few days we were getting home) and when Bevan in pharmacy found out she was not backing down. She called insurance multiple times and had me call multiple times (even when I was ready to give up) and walked me through exactly what to say to make this happen. I am SOOO grateful! It was hours of effort on the phone, but tremendously worth it because now I can stay home all week. Once we got home and I was going to give Elizabeth her med for nausea, we found out that the one that really works well for her is yet, another, of the meds that insurance doesn’t like to pay for outside of the hospital and they had filled an order for a similar med that we had tried, but didn’t work as well for Elizabeth. We’d been tweaking meds for nausea the many days we spent in the hospital and knew that this was the ONE that for sure completely works for her. I called the Primary Children’s Pharmacy close to 9pm and this time Devon was the one who assured me that he would get this med to us and find a way to get it close to home. He did! Dave was able to race to one of the few pharmacies that stock this med just 15 min from our house and arrive just in time before closing. I could tell 50 stories just like this of people doing “little” things that were so huge to me, to our family, and to Elizabeth in these last few weeks. (THANK YOU EVERYONE!) I’m honestly still in shock that we got everything in place, but we did. Physical therapy came to our house today, Occupational therapy came to our house today, her shots were delivered on rush status to our house today, a nurse came and drew blood to take care of her needed labs for the day, and I can’t remember when it was last so beautiful to just be HOME. (Yes, this, after months of quarantine…I love BEING HOME.) I was here when kids got home from school. Elizabeth sat on the couch in our living room and relaxed. My family was all together at home and it was a wonderful day.

HOME!!

So many little miracles to get Elizabeth home today!! It was a nonstop effort (from people in the hospital, in our neighborhood, and from my mom) to get everything in place to make this happen. I'm feeling very grateful for all the prayers, support, and God's mercy. I'm exhausted and grateful to be getting some sleep in my own bed tonight. I'll give a better update tomorrow. Can't go to bed without sending out a heart felt thanks and love to all!! 

Family

We had wonderful visits from family! Elizabeth was cleared to go outside and have people come see her. It was her first time ourside since Sept 23rd and she was so excited. It was wonderful to see Grandma and Grandpa Conlee just before dinner. Grandma Carlson brought up the rest of our family (and Max) up after dinner and Aunt Sadie came then as well. It cheered all of us up.  It was soo nice to chat and laugh and have some 'normal' time this evening. I feel like this was a good day overall for Elizabeth...she dealt with the usual nausea, back pain and got in a little therapy time that wore her out, but continued to make a little progress and that's all we need. We watched as much general conference as we could between Elizabeth's needs and care. (It's always uplifting and I look forward to watching/reading the talks in the weeks to come.) I'm keeping my hopes high to get her home tomorrow or Tuesday! 

Ankle

This morning Elizabeth was excited to point out that she could move one ankle! (One back, one to go.) That was probably the best news of the day. She had a really rough night last night and was too tired to do most of her morning therapy. In an effort to convince the entire team of medical personnel here that we are fully capable of caring for her at home, I've taken on most of her nursing care. They still give meds and do vitals, but Elizabeth really prefers to have the two of us do the rest...transfers to the wheelchair, skin care, positioning, etc. She's getting stronger each day and progressively needs less of my help. We're praying this trend continues at an accelerated pace. We've been here 10 days now and already the next inpatient chemo feels fast approaching, so we'd like to have her mostly recovered from the neurosurgery. The poor thing is sore all over from it! (Today her wrists flared up...they have developed massive, painful bruises from the nerve monitoring needles they used.) One doctor told us that the days through this cancer battle will be like a roller-coaster, but today it seemed like the hours were a roller-coaster...one minute I'm so grateful for the amazing care and doctors and medical technology, and the next I feel like my heart is being torn out watching sweet Elizabeth endure this. For now, I feel like we've got a better sleep plan for tonight, so I will just go with that. As always, thank you for your support and service!

We'll take it!

Elizabeth continued to improve today. We're so grateful!! She's wearing her own clothes (instead of a hospital gown), spending more time in her wheelchair (instead of in bed all day), and even took several steps with a walker and leg braces in therapy this afternoon. Yay! She was also moved to the rehab program today. This is great news because that means she's essentially graduated from the neuro team and that she's stable enough to move to once a shift vital signs (instead of every 4 hours) and this is sooo nice! Elizabeth's struggled with nausea and they're tweaking meds to get on top of it and figure out it works. We met another doctor on the sarcoma team and it was a very positive experience. He was encouraging and I felt like he did a great job assuring Elizabeth that she is going to get through this with lots of support from the oncology team here and from all her family and friends. All the doctors have been good, but I think we were probably in a better place to have a meaningful discussion today. We can't seem to nail down exactly what we need to do to be able to get home. That was one major thing I wanted to accomplish today, but, all in all, I feel like it was a pretty good day. We'll take it ;) 

One week

One week ago at almost exactly this time Elizabeth was coming out of spinal surgery. We're so grateful to have the stress of that behind us! She's come a long way! She's now getting therapy on the rehab unit in Primary children's 4 times throughout the day for a total of 3 hours. She just came back and she's exhausted. She's working on basic things (like getting dressed) as well as the big goal of walking. Right now she stands with a walker & support. We've gotten some test results back and it's all what we were hoping to hear--the bone marrow biopsy was clear and no other cancer was detected in other bones or in other organs. (We already knew that she had a few spots on her lungs and in her L4 vetebral bone.) She's eager to come home, (and we're all eager to get her there) so tomorrow we plan to talk to therapy and nursing teams to see what we need to do to get her there. The days are long and challenging, but not a day has gone by since this began without one or many people reaching out in a special way. Thank you!!