Need another holiday miracle
Hi everyone,
Hello from Stanford once again. This is a complicated and hard update to write, but your prayers, visualizations, etc. are vital now. After months of good news, I’ve had a significant downturn and am facing two life threatening situations. My donor cells are active where they shouldn’t be (attacking my gut) and have almost disappeared from where they should be (making good blood cells)
1. The first priority is reducing the major inflammation and ulcers in my gut caused by graft versus host disease - the donor cells attacking my intestines/colon. I am in near constant pain and have lost a lot of weight from not eating. They have me on very high doses of steroids and immunosuppressants. The doctors are addressing this issue first.
2. In May, I was showing 100% donor cells in my blood and marrow. Now, I only have 17% donor cells making my new blood cells. The old Joanne cells with myelofibrosis (and maybe MDS) have returned, and the disease is growing. The donor cells may not have been strong enough to fight the fibrosis. The doctors are going to try and recharge the donor cells in this area by decreasing the immunosuppressants after the gut is fixed, which could put me into remission. It has worked for some patients but definitely not all. Best miracle case, it works. Worst case, my cells retake everything, the transplant didn’t work, and I’m back to the original prognosis. Maybe there’s some middle ground where they manage the disease. I have no idea, and it’s in the future after the gut is cured.
So, it’s time for a holiday miracle for the second year in a row. I’m sorry to be such a Debbie Downer, but I just learned all this yesterday and haven’t found my sense of humor yet.
Love, Joanne
Comments (17)
Joanne, Are you having company? We could come visit Saturday if you would like a visit. Love, Anne and Hal
Dear Joanne Thank you for your update. You are in Gods hands and with time you will be back home. We pray for you for a good and lasting recovery. so we can hug you again. Love to you, Werner & Qiong
Joanne Yikes much worse than I thought it could be when we were together the week. I was feeling ok after lunch thinking they could fix the gut issue. Yes for another miracle l
Joanne, I'm glad you found the strength to write this. I loved seeing you today, bad news and all, and look forward to seeing you again as frequently as I can. Hang in there!
We are sending you so much love from Oregon. You are vibrant! You are strong! We love you!
We both send you lots of love and lots of hope. And we believe in science miracles. Carry on being brave and it will happen.
Joanne: Sending lot’s of Love and prayers. I am so sorry to hear all of this and pray for your recovery. I hope that they are able to turn this around and are able to find a way for the donor cells to work more effectively. If I feel helpless reading this, I can’t imagine how you are feeling. Please know that you are so loved and that a HUGE community of people are praying for you. That much Love has an effect. I also am sending wishes that you are not in pain and that the treatment can quickly do its work so the healing takes place. Holiday miracle is what is needed. Love Debbie & Doug ❤️❤️❤️❤️❤️🙏
Love, hugs and prayers being sent from S.C. My prayer team meets on Tuesday nights (tonight). I will ask them to specifically pray for healing of the ulcer and gut issues and that the bone marrow issues are reversed and healed. I am personally praying the Holy Spirit radiates through your body and destroys any unhealthy bone marrow and replaces it with healthy cells. Blessings, Helen
Oh, Joanne, I'm so sorry to hear this news and that you are in so much pain. Miracles have happened before and we will pray for them to happen again. They can and they will. With a lot of faith, a lot of good people praying and supporting you and good doctors, you will get through this once again. Hang in there and be strong. Love you, Jane
Sweet Joanne — You've always been the vision of joy and positivity, both in school and in the brief moments we meet during reunions. That optimism is a well of strength from which you can draw. All our hopes, wishes, and prayers are with you, and from what I read here, you have many, many friends who are sending you the same. The doctors are the agents of the miraculous in the modern age, and you are in their hands. Hope you have a Christmas miracle full of good news. All my love from your lifelong friend in the far away, Victor
Hi Joanne upon reading your previous posts, I was hoping for a less challenging outcome of your visit to Stanford. Having traveled a similar journey, I am aware of the obstacles, and also aware that they can be overcome. your energy has always been positive, ever since I can remember. whenever I think of you, I first see your warm loving smile. keep the positivity and focus on healing. we will pray, send positive thoughts and holiday energy your way.
Hi Joanne. Please know we are all praying for your recovery and alleviation of your pain. You’re one of the good ones and I hope to see your beautiful smiling face soon! Mark Roe
Dear Joanne , so sorry to hear of this setback but feel confident that you are in good hands and that all love surrounds you and brings you back into balance . Sending you blessings and much love from Burma where I will keep you in my prayers . Shoshana
Joanne, It must have been so hard to write this. It was so hard to read it. What I do know is that you are a model of deep strength and courage. Draw upon that wellspring and we will be holding you in our thoughts and prayers. I look forward to coming to see you next week. You can let me know if you need or want anything before I come.
💜🙏💜🙏💜 Wow, you are being challenged and I can imagine the emotions going through you in all of this. My thoughts and prayers are with you: hold onto your faith and hope and positive thoughts – hope to see you soon my friend.
Joanne, beacon of light, I'm so sorry to hear of your pain and what sounds like a significant challenge. I wish you love, peace, ease, and a renewed strength to take you through this next phase. We're all with you and praying for you! 💚🙏🏼
Much love and sending support and best wishes your way. Let's figure out a good day for me to come visit, and I can bring anything you need.... Jennifer