busy past week

We've had several hospital and Dr visits during this past week off chemo. Elizabeth had to go get another MRI last Monday because there was miscommunication about the pre-chemo MRI and they only did a part of her spine, instead of the entire spine. I even questioned at the initial MRI when they gave us the time for the scan (because it seemed way too short), but I should have pushed harder and insisted they call the Dr to check the order. Poor Elizabeth...she still never complains. The good news is that both MRI's looked clear. We were so relieved and thankful! Elizabeth was able to get in for an afternoon of physical therapy at Neuroworx last Wednesday. Her first post chemo labs showed a very low hemoglobin, so it was back to the hospital on Friday for a blood transfusion. We felt so blessed to find our dear friends, Jared and Tamra, coming out of clinic just as we were walking in! They came and hung out with us while we waited for the nurse to come get Elizabeth's IV going to send a blood sample to lab for her type and screen. (We wait an hour after that is sent for the right blood unit to be sent up to the floor for Elizabeth.) Elizabeth hates having her port accessed and always opts for an IV when getting blood products. The oncology floor nurses almost never start IV's and usually call IV team, but for some reason they were telling her they couldn't get IV team and she'd have to use her port... Blah. Thankfully, our favorite nurse, Lauren was working that day and came to the rescue. Lauren convinced the "most experienced" IV nurse to try getting an IV on Elizabeth and it worked on the first try. She told us after that she hadn't done an IV in over a year, so we were glad it went perfectly! Yay for Lauren and this nurse! I am always thankful for anything that makes Elizabeth just a little bit more comfortable. Yesterday was more blood work and she just barely scrapped by on her platelets... Hopefully they have hit the low and are coming back up now. 🙏 Another medical hero of the week was Christina at our insurance company. Sorting out medical bills is seriously a (miserable) part time job. I was feeling really frustrated with getting bills for huge amounts I know that I didn't owe, but it's so hard to fight medical companies. I called our insurance for some help in one messy charge and Christina dug deep with me, spending over an hour getting all the documents straight and then called the medical office with me to inform them that they not only had been paid already by the insurance, but they had charged me over the allowed amount and owed ME money. I was SO thankful! I got Christina's direct line and she is my go-to person for medical bills now! A huge blessing! This morning we met with Dr. Anderson in Cleveland. I was a bit discouraged by the lack of progress on the clinical trial. Dr. Anderson didn't have any significant updates to share. I have been contacted by the lab saying that they had orders from Dr. Anderson, but Dr. Anderson didn't have any updates on the progress of where the lab work was at. He told us that he has submitted everything he needs to for the clinical trial and that we should "pray that all involved parties will quickly negotiate" because these clinical trials get stuck when all parties are determined to act in their own best interests. We will definitely pray hard... for Elizabeth and for all the other individuals suffering from this terrible cancer. We are trying to stay positive and focus on the good things that we can control. Elizabeth gets to go to Neuroworx tomorrow and we have some fun things planned this weekend before she goes back to chemo next week. Love you all! Thank you for the continued support and prayers!!! 

ready for recovery time

It's been a week!  2 days of scans,  Dr appointments,  5 day chemo and back to school. (I have kids at 4 different schools this year 😜.)  Glad to have this week behind us! Again,  we were so thankful for the good news that Elizabeth is responding to Chemo! Truly an answer to fasting and prayers! 🙏💕 The other big concern/challenge for Elizabeth  right now is nerve damage. Her left leg never fully recovered mobility or nerve function before her cancer came back. The chemo she started in April immediately began damaging her nerves. It goes without saying that we are staying with the chemo,  because it's working,  but she has had increased nerve pain and loss of sensation with every single chemo round. She is on medication for the nerve pain,  but there is nothing that can be done about the loss of sensation.  It's been discouraging for Elizabeth and we are hoping and praying that the nerves heal and she can regain feeling when she is finally done with this chemo treatment.  (We don't have an end date yet,  but we anticipate Oct/Nov.) She goes to Neuroworx for physical therapy when she can to maintain some strength and mobility.  Hopefully she will be able to make it there next week.  There was a miscommunication in the MRI order, so Elizabeth has to go back for more scans on Monday.  Blaah.  At least the Dr said they don't anticipate any problems,  since the cancer was only in her lungs when she replased in March.  Scans always cause some level of anxiety for us all and I hate her having to go through this again.  Oh well.  We'll get through it.  I'm so overwhelmed and thankful for the many answers to prayers and wonderful acts of service our family has received recently.  From my family heading up a fund raiser for Littlewarrior.org and a special gift from a friend from college days, to neighbors helping me haul much needed dirt to my horse pasture, being treated to an RSL game by family,  meals delivered and lots of caring texts from dear friends, we feel and appreciate your love and kindness!  We could not get through this without you!!  Thank you for everything! 

answer to fasting and prayers... thank you!

Elizabeth and I spent nearly 8 hours on scans, Dr appointments, and chemo yesterday and we were so thankful for the good news that the Chemo continues to work! Only 2 small lesions are now visible on her lungs,  both looking gray instead of black (meaning they are not as solid) and the oncologist was very encouraged by these results. (I think I may sleep again for a few nights with this news!)  We are getting day 2 of 5 day chemo right now.  We will continue chemo through September and then reevaluate again. We truly cannot thank you enough for all the fasting and prayers on Elizabeth's behalf. We are so grateful! We are meeting with Dr. Anderson in Cleveland in a few weeks again and will continue to work towards getting Elizabeth in the immunotherapy vaccine clinical trial that is being developed there. As far as we understand,  they now have all the info they need for Elizabeth to become a candidate and now we just need to hope that she fits the approved protocol. We deeply appreciate your continued support. Thank you for the meals,  the prayers and the encouragement. It has been a very rough week for us,  as well as for a few of our dear cancer friend families, and we are feeling the weight of that.  Our hearts and prayers are with them and with all of you. Love you all!  

Fast Sunday

We would like to kindly request that you would consider including Elizabeth in your fast this Sunday. (Members of the Church of Jesus Christ of Latter-day Saints set aside the first Sunday of each month to fast for special purposes.) We are specifically fasting that her scans look good this month. (No cancer!) We are also fasting that everything will come together for Elizabeth to be in the immunotherapy vaccine clinical trial in Cleveland. Thank you dear family and friends for your continued love, support and prayers. Please let us know if there is any prayer or special fast we can offer on behalf of your family. ❤️ 

one day left of cycle 6 chemo

We are getting day 4 of 5 day chemo today and we are SO excited to be in the BRAND NEW oncology clinic! It's life changing... Really. We have our own small room, with 3 walls and a door (no more curtains!!) and it has a TV and amazing recliner for Elizabeth. The parent's space is comfy too and some of the rooms have windows. (There was not a single window in the entire old clinic.) I am so thankful for the difference it has made for us during the long, challenging chemo hours at the hospital. We had to delay chemo a bit this round because Elizabeth came down with a cold and her platelets were just not recovering as quickly as usual. Thankfully, Elizabeth got in on Wednesday so that she can be done tomorrow and fly out to Seattle on Monday. She and Josh are going to be staying with her cousins at her grandparents house in Woodinville, near Seattle. The oncology team here was really helpful in getting the orders set up for her to get blood work done while she's away. (Unfortunately...blood work and transfusions are part of vacation time these days. 🤪) Still, we are so thankful so can go. She's been really looking forward to this trip. This chemo round has been a bit rougher, again, because of the cold. She's not totally over it yet and it has made a difference in her energy during chemo. She's pushing through and crazy tough, as always. We had another appointment with the doctor in Cleveland about the immunotherapy vaccine. They are hoping to start the clinical trial for this as soon as possible...he said 3 months is best case scenario and it may take up to a year. We thought that they already had all the information they needed for Elizabeth to participate, but it turns out that they also need another tumor sample, the one from her lung biopsy in March. We are working on getting this to them ASAP, but have already run into a few hurdles and we are praying that we can get all the info the Dr's in Cleveland need to have her ready for the vaccine once the trial opens up. The Dr there did say that Elizabeth is exactly the type of patient that they would like to enroll, so we will keep praying and working and hope for the best!!! Thank you for the love, support and prayers! Prayers are everything. We are thankful for all of you. 

time for an update update

We are eating pineapple and getting platelets today, ;) Elizabeth's last chemo round was tough, so we are glad to have that behind us. She's just dealing with some fatigue and bruises, but she's had some great days with family and friends!!

We have some very exciting news for her cancer! There is a world research center in Cleveland that is developing an immunotherapy vaccine for Ewing's Sarcoma and they're hoping to start clicnical trials soon. Here is the link to the presentation that explains this new research.

The Cleveland Clinic WebEx Enterprise Site - Replay Recorded Meeting

https://cmrccf.webex.com/recordingservice/sites/cmrccf/recording/b43104c8e5dd103ab3bb0050568101f7/playback

(You can skip to minute 4:20 once the video is playing to bypass the introductions.) Watching part of this video is the best way to get an understanding of what this amazing new research is doing. It has given me more hope than ever! We will talk to Dr. Anderson at the Cleveland Clinic on the 26th to see how likely it will be for Elizabeth to get this immunotherapy vaccine. Right now the biggest need is continuing the private funding until they can get the go ahead from the government to start the trial and get funding from government and pharmaceutical companies. I learned so much about the very unique challenges within pediatric cancer to finding treatments, preserving life, and protecting long term health for kids with cancer. Here's another great website for information:

Little Warrior Foundation | Find the Cure for Childhood Cancer

https://littlewarrior.org/

(This is a non-profit that was founded with the specific purpose of finding and funding a cure for Ewing's Sarcoma.) 

We are hoping to be hold a fundraiser in the fall so that we can help contribute to this incredible research. More details to come. Thanks for your love, thoughts, and prayers. We believe in miracles and pray this is the miracle that Elizabeth needs. Love you all! 

pray for research and pharmaceutical participation!