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!

Huntsman, vacation, chemo

Elizabeth got to spend some good days away from home and the hospital! She was able to go to girls camp for 2 days and enjoyed that.  We went camping with family this past weekend as well. Elizabeth was able to jet ski/inner tube, go 4 wheeling, and run around with cousins. She had a great time and was totally worn out after a day and a half, so we brought her home and she had some good resting days being at home just with her dad. As far as cancer life updates, we met with the radiation oncologist at the Huntsman and discussed radiation on the 2 lesions left on her lungs. He essentially told us that the diagnostic imaging accuracy is better than than the radiation imaging accuracy and he isn't comfortable doing lung radiation at this point because of the risk of damaging healthy lung tissue. He said that he will check back with our sarcoma oncologist after the next set of imaging (this will happen sometime early fall) and see if the lesions are still visible at that point. I had just optimistically assumed that her lesions would continue to shrink, so it was very discouraging to hear that cancer cells just stop responding sometimes and develop a resistance to the chemo regimen. We continue to pray that Elizabeth's tumors will keep responding to treatments and continue to shrink. Elizabeth's been diligent at taking the many vitamins I throw at her and it seems they're helping...her platelets came up to 204. We are sitting in the hospital getting day 2 of chemo right now. Yesterday was a particularly difficult day of Dr appointments and chemo and we were so thankful for the kind friends that brought us dinner. It really is a cancer battle...for Elizabeth, most of all, but also for the whole family. Elizabeth doesn't love having pictures of her posted, so I try to honor that. I am trying to be better at keeping updates on social media. I have felt so overwhelmed by just living through this that I don't really feel much like writing about it, so thanks for still checking this blog/Facebook page periodically. We are so thankful for the love, support and PRAYERS on Elizabeth's behalf. We know that God is working miracles because of your faith and prayers. We are also praying for new developments in research that will bring about better treatments for Ewing's sarcoma. I have been in touch with the Dr in Cleveland about some promising new research and will learn more about that during a seminar next week. I am trying to stay hopeful and positive. Love you all! Sending prayers for blessings and comfort for you in each of your personal challenges💕🙏