more consults, more chemo

We are getting day 1 of round 3 chemo right now. The last week has been a wonderful break! Elizabeth was able to feel good and spend some time enjoying friends and family and painting. We had a consult with another specialist in Cleveland, Dr. Pete Anderson. It took us 2 months to get this appointment and we were thankful to be able to do the visit virtually. It was a great consult and he had lots of good insight. I appreciated his emphasis on living "like you don't have cancer" as much as possible. He encouraged us to get Elizabeth back to as many life activities as soon as possible (including sports, arts, school, social) and to have her immersed in things that she really enjoys. He talked about some research in the works and requested more specific info on the location of the breaks on Elizabeth's mutated gene that causes Ewing's, as he felt this may be relevant for future treatment options that are being developed right now. I was able to get that info from our oncologist here today and also found out that most people don't know this info about their tumor because the tumor analysis is VERY expensive. The only reason that we have this info for Elizabeth is that we opted into a study when she was first diagnosed in 2020 because we wanted to facilitate research for this disease in hopes to help develop treatment for others who get this cancer.  I am thankful now that we decided to participate! We will get scans in June and that will determine how we proceed with Elizabeth's chemo. We are PRAYING SO HARD that this chemo has shrunk the existing tumors! We are also praying for answers to the increasing numbness in her legs. This has been very discouraging for Elizabeth. Dr. Anderson thinks it is most likely related to her chemo, but it's almost impossible to know for sure. We see the neurosurgeon for follow up in a few weeks and I think we will try to get in with a neurologist if he doesn't have any helpful insights. (His main focus is addressing the stability of her back.) We have not been back to Neuroworx for therapy because she's been tired and busy with travel and appointments, but hopefully we can get back soon. We are thankful for the meals brought, the texts sent, the notes and words of encouragement. We are very tired, but stay focused on hope and faith. Thank you for all you do! We pray for you too! 

time for an update

If you want to see pictures, go to this Facebook page. The Facebook post is the same as this one, it's just so hard to add pictures to this site lately.

https://www.facebook.com/groups/3127656964145734/?ref=share

Here's an update on Elizabeth from last time... 

We got back from our wonderful trip to Orlando and she had a day to rest before starting 5 day chemo. Chemo went as expected. It made her sick (pretty sick this time) and very tired. She was still able to enjoy wonderful visits from dear friends during this time. We're thankful for this! It's so nice to have people over and take our minds off chemo during those weeks. She had just a few days of recovery before we headed out to Philadelphia to consult with some sarcoma Dr's at Children's Hospital of Philadelphia (CHOP). We loved the time we spent at CHOP and the people we met there.  Families that come to CHOP from out of town are invited to stay at the Ronald McDonald house and it's so great to be there! It's right by the hospital and you can take a quick shuttle to and from CHOP. The house takes complete care of Families and it's a huge blessing not to have to worry about meals or a comfortable, convenient place to stay. The people there are also wonderful and I'm thankful for these "little things" that are huge in taking some stress off of us. CHOP is a major research and treatment center for Ewing's Sarcoma. We were able to ask questions and learn a lot about research and treatments that could benefit Elizabeth. We will stay in SLC for treatment and add a Dr there to our consult team. Elizabeth and I then spent a day in NYC. It was an adventure! We only had one day, but we found ways to do as much as possible with Elizabeth's low energy levels. (Her last blood levels were really good the day we left, so we didn't have to worry excessively about her immunity. Her chemo regimen is such that her immunity really drops somewhere between 7-14 days following treatment and we fit this trip before that time frame.) We took the ferry past the Statue of Liberty, visited the Harry Potter store in Brooklyn, (its amazing!) ate delicious burgers and cheesecake at Junior's in Manhattan, and saw the Broadway show Wicked. We are eager to get home and rest. This last several weeks had been intense with travel and treatment. Next chemo is set for May 20th. Hopefully Elizabeth can get out to physical therapy at Neuroworx a time or two before then. Her oncologists encourage this, but she tires quickly and she it can be difficult to balance rest and therapy. Thank you for your continuous support and prayers!! Thank you for meals and texts to ask if you can have my younger kids over or help drive them places. (The answer is always YES!) We pray daily for miracles and also that doctors working hard to find better treatment/cures will be blessed and guided to find them!!! We pray for all of you as well! We love you! Happy Mother's day!