Thankful

Here's the amazing turkey and carrots from our Thanksgiving dinner

and here's how they were cooked! I don't recall the last time I had a Thanksgiving dinner when then turkey wasn't done in a Dutch oven. My dad is a master at it!

I've taken a break from posting because I just wanted to ignore our 'cancer life' for a few days. It's been wonderful! The beauty of my pacific northwest home never fails to take my breath away. We had great weather and Elizabeth spent lots of time enjoying relaxing, family time, good food, and got a lot of walking in. (My parent's home is not wheelchair/walker friendly and it's sort of a blessing...it really pushed Elizabeth to move more.) 

We're at the proton center right now doing her treatment plan. She'll get a special pillow bed made for her based on the CT done today and we'll be back in a few weeks to start treatment. We're so blessed to have my parents here and I feel like I couldn't do this without them.

On a very happy note, Elizabeth's weight had been a major concern and she had a great appetite this past week. (It was a huge blessing to have a week delay in her chemo schedule.) When she was weighed this morning I was SOO excited to see that her weight is stable and even slightly up from the last time she was weighed at the hospital.  This is a tremendous blessing and an answer to prayers. Thank you everyone!!

I have a lot of anxiety about how exhausting this proton and chemo treatment period will be for Elizabeth, but everything has worked out and so I keep reminding myself to have faith and be positive. Our whole family will be here for the first 2 weeks of her treatment over Christmas break and we have to figure out how to navigate January. It's so much to consider, but I just rely on the Lord to guide is as we pray and work to sort out what's best for everyone.

Hope you all had a wonderful Thanksgiving weekend! I'm thankful for all of you...our family and friends supporting us and praying for Elizabeth and our family through this difficult time. We couldn't do it without you! Thank you!! 

Set backs

Today was the first time that Elizabeth's blood count was too low to go in for her scheduled 2 day chemo visit. She has really low platelets and so I assume that we will be heading in to the hospital for a platelet transfusion tomorrow. I'll see what the case manager says after talking to her Dr in the morning. I'm glad her white count is up though. (I worry so much about infections when her white count is close to 0...which has happened a few times.) Her walking progress is slow because her physical therapist is emphasizing the need to focus on her gait. Even though she's 'walking,' she's not using her legs or hips evenly and has to really compensate for the weakness and immobility in her left leg. He gave her lots of  strength exercises and I could tell that she was very discouraged by the end of his visit when she struggled to do many of the basic leg lifts. She doesn't get really down very often, and so it broke my heart to see her so sad about her weakness. Of course, we are so grateful for her amazing progress to this point and feel the power and blessings of all the prayers, but this process is really a marathon and is going to take tremendous hard work and patience. It really wares her out too, so I feel like for every good walking day she has, she lays low for a day or two after. On a happy note, she stared music therapy through the hospital and is learning to play the guitar.  Her teacher does video chat lessons when she feels good. This has been a fun thing for her to do. She also has been doing little canvas paintings and they always turn out great! I love adding them to my home decor. This past week I also took her to an appointment with a nurse practitioner that her vaulting coach referred me to. He focuses on supportive care for oncology patients. It was a great experience! He was so knowledgeable and talked about what we can do to strengthen Elizabeth's body throughout chemo treatment. My biggest concern was her weight loss and he addressed the issue that people with her treatment regimen have with absorbing calories and nutrients from foods. She's taking digestive enzymes, some specialized protein powder, and a few other nutrients to assist with this now. Hopefully her body responds well. He also gave me carb, fats, and protein goals and she's doing a pretty good job meeting these each day. (The protein goal is pretty high and it's the biggest challenge.) Overall,  it's been a pretty good week home. 

Skipping baby steps

When Elizabeth was just over a year old she wasn't showing any signs of being close to walking. One day, she was sitting on the floor playing with Josh and suddenly decided to stand up. She pushed herself up off the floor to standing and immediately fell down. This went on for the next several hours and she progressed to several steps by the next day. Now, I feel like it's almost the same story all over again! She's been using her walker with leg braces very sporadically until today. I've been so worried about her walking progress. She and Josh have been making fast foods runs the last few days and today when they got home, Elizabeth WALKED in the door! I was shocked! Usually I help her into her wheelchair from the car, but they didn't tell me that they were home and Elizabeth held on to the house and the stair railing as she made all her way up the (many) front steps to our front door. I was shocked! Again, this evening, she decided to walk to her room from the couch...no leg braces, no walker...she needed a shoulder or wall to lean on the entire time, but she did it!! Thank you for the prayers! This is a miracle from where she has been! She's still having some muscle cramping, but we've spent hours together stretching (while watching TV) and using the massager from therapy on her legs. It seems to have helped. She's had a really good day today and some fun times doing normal things...like getting Chick-fil-A with just her brother. (Thank you amazing people for the gift cards.) I've been overwhelmed by the outpouring of support, as usual. I can't tell you how much it means!! I hate to even mention things, (because I feel like I can't possibly remember everything and I don't want to leave people out that I want to thank) but I really wanted to highlight a few that have been a tremendous blessing to us just this past week. A friend stopped by a brought a cute new hat for Elizabeth. (It was so nice I had a few minutes to go out walking with her.) A friend far from Utah ordered Elizabeth's favorite cupcakes for her from the famous Cravings shop. Several friends and family members called/texted to say they were thinking of us and offer support. Meals were offered. People made and sold/are selling sun catchers and hats as fundraisers to support Elizabeth. Wow! Just wow! This support carries us through! 

If you would like to order a hat, please let me know. You can text me (206-450-7749) Beanies are $10, Hats are $15. They're also making these with leather patches in place of the fabric ones, if you'd prefer. No pressure! Just spreading the word for our friends that decided to make these to support Elizabeth.

(This is the best picture I could get of Josh and Elizabeth...they can't appreciate a mom's need to celebrate these little moments;)

Thank you for giving blood

Elizabeth finished chemo at 6am on Friday and got 2 units of blood that afternoon because her blood factors were so low. I feel grateful for the people who donated the blood that she was given and for people everywhere that donate blood to help save lives. She was too sick to swallow the Tylenol before the blood transfusions, but, thankfully, remained comfortable and didn't get a fever during the infusions. We were able to get her home Friday evening just before 5pm. I feel so grateful that we've been able to figure out lots of different ways to keep her nausea under control during these 5 day chemo stays. We kept her on her nausea meds going around the clock for the last few days and she's done ok and been able to eat and rest fairly well. We're excited to have a full week home and have a family dinner all together for the first time in a very long time.

D pod

This is our first time staying in D Pod on the 4th floor at the hospital and this the place to be! There is a parent shower and bathroom right next to us (seriously, right outside of Elizabeth's room) and parent room with laundry and kitchenette for family use right across the hall. I never knew this room existed until this admission! I love that it's so convenient for our room location, but, more than that, I love that the parent room has been a place to meet other parents of kids going through cancer and chemo. I met a mom just now whose 9 yr old boy was diagnosed on Saturday. I wanted to hug her! (With covid this is totally out of the question.) :(  I told her I know exactly how she's feeling...the shock and devastation...and it was so nice to talk and support each other. I met another mom and little boy that are getting 5 day inpatient chemo, just like us. He's 7 and he loves to walk the hall pushing his IV pole and chatting with everyone.  Even though he's got a feeding tube and has had multiple brain surgeries, he and his mom are usually out walking around D pod smiling. I've loved talking to her as well. He was diagnosed in August and they've got a lot of inpatient chemo, just like us. I haven't yet met a teenager or parent of a teenager here in the hospital...I keep thinking that could be a good connection for Elizabeth and me. They're not encouraging connections with covid though:(  Oh well, I'm glad for the people that I have been able to meet. I'm also glad that this 5 day chemo has been 1000x better than the last. We finally found a good nausea regimen. She sleeps more with the meds we're using, which is really good, except for the challenge of keeping her awake enough to eat. She's already losing weight faster than the Dr's like to see and so now that's our next big focus...eating!! Elizabeth's really wanting to avoid a feeding tube, so we're stocking up on all the high calorie foods she will consider trying. She had chemo at 6am this morning and tomorrow she'll get her last chemo at 3am. She has to stay for follow up meds until 2pm, but if she feels good at 2:30pm tomorrow, then we can go home. Yay!

ok chemo day

Elizabeth had sort of a rough morning, but thankfully we were able to help her get comfortable before her chemo around 11:30. She was able to get some good meds that we didn't use last time, but found to be helpful. She was able to sleep most of the day, which is what she hoped for. She woke up around 5pm and felt good enough to eat some dinner. We started watching the 2nd and 3rd Hunger Games movies (she recently read all the books) and she fell asleep before we finished the last movie. I'm grateful the day has gone fairly well for her. The plan is to start her next chemo at 8:30 tomorrow morning.

Six weeks in Seattle

We found out today that we will be going to Seattle for 6 weeks of proton radiation therapy that will start Dec 21^st. It will be 5 days a week for 6 weeks and she will be getting her chemo every other week at Seattl Children’s Hospital during these 6 weeks while doing the radiation.  We’re grateful to be fortunate enough to do this type of radiation on her spine. In talking to the DR in Seattle today, I learned that many patients that have the same type of tumor removal surgery that Elizabeth had end up needing rods or some sort of metal in their back. Had she needed any type of metal put in her back, she would not be able to do the proton radiation.  We didn’t even know about this miracle today! I had no idea that most people end up with metal in their back and that having metal in your back prevents you from being able to do proton radiation. The benefit of proton radiation is that it stops at the tumor and does not damage any surrounding tissue. This means her colon and all other organs in her pelvis and lower spine area will not be affected by radiation. A HUGE BLESSING! We will do photon (more general) radiation on her lungs after chemo is done in the late spring/early summer. Dr’s assured me that lung radiation is very advanced and they have excellent ways of avoiding damage to her surrounding organs and heart once the time comes for that treatment. Elizabeth is now done with day one of chemo. She’s already feeling too sick to eat, even with all the nausea meds, and I hope she can get a little food in before falling back to sleep for the night. Her dad brought her up some cheesecake it would be nice if she could enjoy a little.

The temple!

Dave and I had the amazing opportunity to attend the temple last week. Since the temples have been closed for the last several months, people are only allowed to attend in small groups for special occasions, such as live endowments and marriage sealings. There is a young man in our neighborhood that had the same cancer Elizabeth had when he was 15. (His cancer was in his leg.) He is now going on a mission and was going through the temple for the first time before leaving. His mom reached out to us and asked us if we would like to come with their small family group. It was another time when the kindness and generosity of another person left me without words. Dave and I were so grateful for this incredible blessing of being able to attend the Mt. Timpanogos temple, the same temple we were married in, and feel the peace and comfort that comes with being able to draw nearer to God. We need so much strength and direction as we move forward with the challenges of Elizabeth’s treatment. We don’t know when we will again be able to pray and ponder over these things in the temple again and that made this experience all the more precious to us. Jake is going to be an awesome missionary! THANK YOU JOHNSTON FAMILY! Thank you also to Grandma and Grandpa Conlee. They came over early in the morning and got the kids off to school and stayed with Elizabeth while we were at the temple. I have learned that even though cancer is the worst, we can get through it because we have the BEST people in our life. We couldn’t do this without all the incredible support of our dear friends and family.

It's been good

I didn’t realize that it had been so many days since I posted on the blog. Overall, it’s been a really good past week and a half home with Elizabeth. We were disappointed that she had to come get platelets all the way up in Salt Lake on her week off, but even that went well and she was able to get in, get her one unit of plasma, and get home without any complications or much discomfort. She has spent lots of time painting. (Her fall canvas paintings are lovely! I’d post a picture if we were still home.) We have enjoyed fun family game nights, especially with Uncle James. She was able to do a movie night with a few friends. Yesterday our stake president stopped by for a visit and gave her a very nice blessing.  He let her know of the many, many people praying for her. In the evening her vaulting coach dropped off a few gifts bags from all of her awesome friends from the horse vaulting team and, as usual, we were blown away by the thoughtfulness and generosity put into everything in those bags. She got a cute hat, more paint stuff, great snacks, two TEVC (her vaulting team) logo sweatshirts, and some AMAZING silk pillowcases. THANK YOU wonderful people!!! We're back in the hospital now for our 5 day chemo. Elizabeth is all settled in. Her port is accessed and they've given her nausea meds and they're just about to start the chemo drugs.

Platelets

The Dr called us this morning to let us know that  we needed  to  bring Elizabeth  in to primary children's hospital to get platelets ASAP because  of  how low her levels  were on her last labs. So, that's  been our day. She's all done getting  them now and seems to be tolerating it well, so hopefully  we can head home soon. I'm thankful  for the great friends that took my 3 younger  kids and for the freezer full of  meals from all of you. We've had some rough evenings and nights and we're using them and will definitely  pull one  out tonight.

Stairs and school

Elizabeth  was able to practice  doing  a few  stairs  the other night while working  with Dave on her physical therapy.  She also felt good enough  to go to one class at school  yesterday. It was  so great  to see her roll into class with  her friends. She's  been working  hard on math homework  with  her dad each day trying  to catch up on the current  term. I'm so thankful  that Dave's  awesome at  math and loves teaching it. He enjoys math time  with  Elizabeth, and I  think  she hasn't  quit math yet because her dad makes it fun. Other than that, we continue  with the usual  struggles. She HATES her daily  shots (I don't blame her) and sometimes can barely  bring  herself to take the rest of her medications at night. It is often beyond what I  can take to see her go through this, but I remain  grateful  for good treatment.