Friday, July 14, 2017

Onward and Upward

We will praise Him in the storm! We are super grateful that Andrew is a ton more comfortable today (getting up and down and all around... evening crouching down and hiding behind his hospital bed during a game of hide and seek with Abby and Grace)! So far, it appears the transition to oral pain meds has gone well. Please pray the pain relief continues.  Lord willing, Andrew will be discharged tomorrow (Saturday), so we have arranged to all fly home together on Sunday 🙌🏻.  Please pray nothing thwarts those plans. We visited with Andrew's oncologist here for a good 45 minutes this afternoon and the plan is for Andrew to start Everolimus (a different chemotherapy), not the more aggressive therapy we initially talked about because she is concerned about liver toxicity from doing that chemo regimen and then PRRT.  After 3 months of Everolimus, Andrew would have a scan to see if it's working and if so continue until it stops, although if it's not then, Lord willing, she should have a protocol/study open for PRRT in children here in Iowa sometime in the next couple of months (Iowa sounds WAAAAY better than having to travel internationally every 6 weeks)! In the mean time, our precious and brilliant friend at MD Anderson and his team are doing a full genetic sequencing on Andrew's tumor to help guide us as to which therapies will be effective and hopefully stay one step ahead of this dreadful disease.  We trust that our plan B is God's plan A and He knows best, so please pray for supernatural wisdom, hope, and skill for everyone involved in taking care of Andrew and peace for us in the process.  It feels like we've gotten a lot of no's lately, please pray for a whole lot of yes'... yes this drug is working, yes it is being well tolerated (there are some not so fun side effects associated with the new chemo, with mouth sores being the worst, diarrhea, nausea, and hair turning white, etc), yes prrt is available in Iowa, yes the tumors have shrunk, yes we can remove the tumors and lymph nodes, yes there is no evidence of disease... you know, like that 😉.  #butGod #Heisable

I will post updated pics when we are home and I can use our computer instead of my phone.

We feel your prayers, PLEASE keep them coming! We need them! We love you troops!!!

1 comment:

4manmamma said...

You don't know me but your family and your story have inspired me. I think of your family all the time and pray for your babies often. Please know that there are countless people out there bringing positive energy, prayers and good thoughts to your family