Vacation is ending

We had a nice Christmas and I had an especially wonderful time just being at home and ignoring our "cancer life" for the last week. Unfortunately, Elizabeth's blood counts were low on Monday. The Dr wanted to get her in for a blood transfusion before she starts radiation next week and so we were up early this morning to get to Salt Lake and she's now getting 2 units of blood. Thankfully, she's tolerated all blood products she's been given in the past and it's all going smoothly so far today as well. Her walking is steadily improving, which is great to see. We've been in touch with Seattle regularly this week and she's set to start radiation on Monday and then will be admitted to Seattle children's hospital for her 2 day chemo on the 5th. We're so grateful this worked out, because we had been waiting to hear about insurance approval for this admission. (Usually, they don't admit patients in Seattle for 2 day chemo like they do here at Primary children's, but we really wanted to stay at the hospital for better IV nausea control and for proximity to radiation during chemo.) Elizabeth and I are both feeling sad for the time we're going to be away from the rest of our family, our pets (Max and Lemon loove Elizabeth and she loves them🐶🐤) and just the comfort of home, but we're thankful to be able to get proton radiation and for the best "home away from home" possible at my parent's house. We're also looking forward to spending time with my wonderful parents and seeing some dear friends during our time there. 

BEST CHRISTMAS EVER! Chemo is working

BEST NEWS!! Chemo is working! Cancer is no longer visible in Elizabeth's lungs and spine. They continue treatment with the goal of killing all stem cells not yet visible, so she still has to do all the radiation and chemo until April/ May, but this is best case scenario. Thank you, thank you for the prayers 🙏❤ 🙏 ❤  We're so grateful for your prayers and God's mercy and miracles (to be clear, Elizabeth's cancer isn't confirmed gone, but responding perfectly to treatments)

Home for Christmas

Elizabeth finished up her 5 day chemo Monday evening. She had an MRI Monday afternoon and then had a PET scan first thing Tues morning to assess how her treatments are going. We will get the results later this afternoon. We got home yesterday around lunch time and are so very, very grateful to be together as a family again and to be able to all be at home together for Christmas. Thank you for your prayers. Elizabeth was able to tolerate this chemo round much better than usual and I know it was a blessing from God. 

Chemo cheer

Look at these fun lights and cute little Christmas tree and gnome! Elizabeth's vaulting coach was so sweet to bring a few gift bags up to the hospital from Elizabeth's vaulting team. They were filled with such thoughtful, comforting and fun things! I love the little holiday cheer these things add to our room. Elizabeth's had a GREAT day as far as chemo goes! She's been able to eat most every meal throughout the day and was able to have a fun visit from her dad this evening. She's got chemo at 9:30 tomorrow morning and an MRI in the afternoon. Monday she will start chemo around 6:30am and then get her last chemo support drugs Monday evening around 6pm. We have to stay until Tuesday morning because she has a scan at 7:30am to assess how her treatments are working and then we can go home. Yay! Thank you everyone for the prayers. We feel them. We're praying for you too! We're praying that you will be blessed in the ways you need and know of our gratitude and appreciation for all of you!

God is with us

God is with us. By 'us' I not only mean Elizabeth, me, Dave, and my children, but all of us. I have used this blog primarily to focus on the physical updates and happenings, but it's impossible to go through something like this without your entire self--physical, emotional, mental, spiritual--being deeply impacted. I have been reading today in the New Testament and was drawn to John,  chapter 14. I love vs 18: "I will not leave you comfortless: I will come to you." I know this has been true for me, and for Elizabeth. Thank you for all your prayers. We feel strength and comfort in Christ. I know that each of us can feel this in our own lives as well. I also love vs 27: "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." The most difficult days are these long stays of 5 day chemo when I sit by Elizabeth and watch her sleep while getting her chemo and help her to the bathroom while attached to several IV bags and feeling so sick and I feel troubled by her suffering and afraid for her well-being. But I know that Christ is aware of her, and of me and he doesn't want me to dwell in these feelings. I know that Elizabeth was a child of God before she was my child and so I will trust in God and seek His peace with all the patience and diligence that I possibly can. Elizabeth's getting her first round of chemo drugs for this stay right now. She had a small physical therapy session when we first got to the hospital because she's usually too sick once she's a few days in to her chemo treatment. Physical therapy went pretty well. Thankfully, she's sleeping well for now. One day at a time...

Crutching it

Yep! Elizabeth's crushing it with her crutches! I've been feeling sad about the chemo delays, but it looks like this is exactly what she needs to progress in walking. I've only seen her use crutches for the last two days! She's still very unstable and her left leg is extremely weak. It's a lot of effort for her to walk without swinging her left hip and leg around a bit to compensate, so she ends up walking like this part of the time. She had a great visit with PT this afternoon and she's been painting the day away. Josh brought home a giant paint project canvas kit from a school gift exchange and the parts that Elizabeth's done so far are looking good! The plan is to do chemo this Thurs afternoon to Monday evening, get her PET scan early Tuesday morning, (a week from today) and then come home. The PET scan will tell us how her body is responding to the chemo. Thank you for the prayers! (As always!) We're hopeful to see that the chemo treatment so far has significantly reduced her cancer.

Plan C

Sadly, Elizabeth missed chemo counts again. Her platelets are too low. We are hoping and praying that they come up by Thursday so that she can do chemo Friday-Tuesday and not have to be in the hospital on Christmas. Of course this means further delays in starting radiation. Plan A was start radiation Dec 21, plan B was Dec 28, and now I am not even going to try to anticipate what plan C looks like. Maybe early or mid January? Time will tell. One day at a time. All my trust in God that this is somehow for the best.

I was listening to conference talks today and someone quoted this from President Kimball 

"The Lord does notice us, and he watches over us. But it is usually through another person that he meets our needs." You are meeting our needs over and over again and I  was brought to tears once more this afternoon from the incomprehensible generosity of those around me. The Lord is meeting our needs through you. Thank you!! You're all an example to me! I love this little wood carving that was given to Elizabeth and we keep it in our kitchen.

It reminds me not only of praying hands, but also makes me think of the many hands that uplift, carry, and give to us. Elizabeth had a great week and enjoyed more time visiting with friends and neighbors than she has since she was diagnosed. It's been wonderful and I am so grateful for days and weeks like this. Even though I am eager to move through her chemo treatment schedule,  I'm thankful for time I get to be in our home and feeling the Christmas spirit.

Oh my goodness…

 

It’s been a week! I’m going to start off with the happy things. Elizabeth finished her 8 week lovenox protocol, which means no more shots twice a day that leave bruises all over her arms and legs. HORRAY! She’s been working on her nutrition with a nurse practitioner that her vaulting coach referred us to and it’s really helping. She’s keeping weight on, stronger, and her blood counts have even improved. She was able to go watch her friend play basketball at the jr. high. She’s enjoyed fun family game time with uncles & aunts and visits from friends in the neighborhood. Her home physical therapy visits are twice a week now and her first visit this week was great! She worked on sit/stands and walking on stairs with crutches. It’s wonderful to see her get stronger and she is able to use her walker more consistently now, but it still wares her out and she generally prefers the ease of the wheelchair. She spends time painting most days and it’s a win-win because I end up with awesome canvas or watercolor art to decorate the house. (Her latest snowman watercolor painting was darling.) On the flip side, we’ve dealt with some major frustrations in poor communication with the doctors…both between the doctors and the doctors and us. I’ve been trying for weeks to get to right person to contact for setting up physical therapy home visits while we’re in WA, but instead found out that the Dr’s here and the radiation center had different starts dates for her treatment in Seattle, as well as a different chemo plan during treatment. It’s all so much more complicated than I care to go on explaining, but I ended up reaching out to our social worker and it was a huge blessing because he stepped right in an sorted it all out for me over a few days. We’ll now be starting radiation Dec 28^th and spending an extra 5 day week in the hospital getting chemo while in Seattle. This is very sad for me because I was looking forward to getting 2 weeks of radiation done while our family was all together.  I’m still working on sorting out what I’m going to do with the rest of my family plans with this shift. It will work out. I’m thankful for all the friends and family that have offered to help.

People are amazing

Nearly every day I'm brought to tears by the generosity of the people that know Elizabeth and our family and this week was no different. The backpack above is just one example. A friend at school wanted to do something to help Elizabeth so his mom embroidered this hospital backpack for her. Several Jr high kids wrote notes and filled it with all sorts of 'comforts' (like a blanket, lotion, chapstick) for Elizabeth. The idea is that this backpack will be returned to the school when she goes to the hospital for chemo.  Friends will refill it and return it to her every time she gets home from her hospital chemo. This was such a great thing for her to have her first few days back from the hospital! She feels pretty crummy for a day or two and this will be such a nice thing for her to have and look through during the most miserable days when she returns home. In addition to this, yet another dear friend contacted me about doing a fundraiser. (Wow...just wow.) There were flowers and notes left at our doorstep from school friends. A package was sent by peers all the way in West Virginia. (My brother in law from that area shared Elizabeth's story with his family there and the girls at church there wanted to show her support.) An aunt, cousin and grandma spent extra time with my kids to cheer them up while I was away at the hospital with Elizabeth and an uncle stopped by once Elizabeth was home to visit with all of us.

This has been a heavy year for the world and for our country, but I feel more inspired than ever by the generosity, faith, prayers, love and support of amazing people. There is so much good!!! I've seen countless miracles through people and through divine intervention. When I feel like I can't go on, I remember these miracles and trust God that another one will be there when I need it. Thank you for your prayers. I have a lot of anxiety about the coming months of balancing daily radiation and chemo weeks and family life during our months in Seattle and I know Elizabeth is feeling this as well. I'm more grateful than ever for the continuous support. 

Physical therapy came today and the Dr's and PT have essentially said 'take the wheelchair away.' Of course she's using it when she's sick for a her few days home from chemo and whenever she feels tired or needs a break, but she is supposed to start wearing the leg braces and using the walker nearly full time.  The leg braces are custom made, but still clunky and annoying and I feel bad it's one more thing for her to tolerate. PT stressed that the leg braces will help ensure she walks with proper form and even simplify walking for now because she won't have to worry about controlling her ankle joint and can focus on her form with her knees. (Wearing the braces while sitting is also important to maintain proper ankle flexion.) No chemo till the 14th, so I'm hopeful for a good week of progress!  

Back to it...

After a wonderful Thanksgiving weekend, Elizabeth's had an intense last few days. She had a 5 hour appointment at the Seattle Proton Center on Monday, went straight to the airport, arrived home that evening for her home health appointment, and is back today at Primary Children's getting chemo. (Thankfully, it's her 2 day chemo round.) The main part of our Proton Center visit was getting her custom radiation bed made. This process was similar to having an MRI, but involved a lot of repositioning as she was moved in and out of the machine, molding a bed beneath her with laser alignments, and even getting 2 pin point tattoos to ensure that her back is lined up perfectly for her radiation treatments. She’s done with chemo for today and has miserable with her nausea for the last several hours. It’s so frustrating how fast it gets out of control. What we didn't know is the one of the meds that is most helpful for her nausea (IV dexamethasone) is now in shortage because it was recently discovered to be effective in helping treat covid patients. I assumed this med had been given IV already and then they brought the pill in for her to swallow when she was starting to feel pretty sick. At that point, it had already become difficult to swallow things because of nausea. I hate when this happens!! It took her about 2 hours to get her 3 nausea pills down because she could only tolerate a tiny bit at a time. Poor thing:( It’s 1am now and she’s finally fallen asleep, so I will too.