Madisen’s identity has finally been revealed! Since the wait of 1 year was over, I filled out paperwork through Emory and the Be The Match Foundation. I included my contact information and it was sent to her.
Hello everyone! It has been just over a year since I received the incredible gift of my anonymous donor’s bone marrow through an 8-hour infusion! Praise the Lord!
I am starting to feel like my old self now at 8 months post transplant. Yippee! I am so grateful, so thankful and so blessed. It is truly a miracle. Prior to my transplant I tried to anticipate all of the worst scenarios that could happen as a result of the transplant with my family, friends, home and work and make preparations for all. Carl and I revised our wills, made sure I had a living will, chose Carl and Alex as my power of attorney and I assigned a board of directors for Sims Patrick Studio in case I was incapacitated for any reason. Similar to when I was pregnant with Alex, I found myself going through a nesting period at home…it felt similar to a maternity leave but this time, I was the baby coming home. I started cleaning, purging and organizing things.
Once I got my closets and desk cleared out, I was ready for the ordeal and entered the hospital ready to fight with all my heart and soul and the most positive attitude I could pull together! After I entered the hospital in February of 2019, everything in my life went on hold because no one could tell me with certainty the final results of my transplant.
Now that I have passed the 8 month mark, I am feeling good, more confident, working full time and traveling again with my team. I am starting to make some long term plans. I have a new lease on life.
I’m so blessed and grateful to my donor who saved my life! My incredible transplant team at Emory of Dr. Waller, Dr. Lechowicz, the transplant floor team of nurses and PA’s as well as all of the nurses and the PA’s in clinic, CeCe, Joel, Amanda, Daniel, Maggie etc. They have all guided me and nurtured me back to health with their incredible intuition, skill and compassion. My family…. especially my sister Sheri for her constant caregiving. My sister Lisa and my Mom and Dad and my extended family of in-laws, aunts, uncles and cousins. My dear “penguin cap“ team of Sheri, Diana and Caroline. So many notes and gifts and calls. So many Incredible people. So much love. It takes a village.
Below, I am including a piece of writing that I recently put together after being inspired by a Ted Talk on “end of life“ needs. There have been continuing texts and emails going back and forth with my Uncle Bill an amazing retired internist who just lost his struggle with Lymphoma and has been one of my confidants and protectors. It all started when he and I were expressing our frustration about the chemotherapy infusion experience and the lack of comfort and beauty in the hospital infusion centers around the country. We have often brainstormed… how much privacy vs community and aesthetic surroundings does one want/need when going through such a necessary but humiliating infusion process? Why can’t you have more than one person with you at a time during the infusion? Why is everything plastic, etc.
As an interior designer and spending so much time in hospitals over the last 2.5 years, I believe that we have a monumental task to make the patient experience more beautifully designed… physically, mentally and spiritually. I wrote this after thinking about and praying for Uncle Bill and pondering my brother Bill’s last week of life. I had all of this in mind when jotting down the following thoughts. I’m wondering how I can help. It is a very rough draft of raw thoughts.
For living and especially for dying, we need to sense, feel, touch, smell, hear and see beauty and unconditional love and close community around us. We want to feel trust, compassion and respect with our closest friends and family. We also need simple sensual experiences like touch, sight, smell, reflection on what matters. Bringing nature into view. We need simple pleasures like the feeling of a snowball melting in your hand, a soft hug, your dog at the foot of your bed, seeing into someone’s eyes, seeing the beginnings of an intricate flower bloom or a view of a magnificent garden or distant mountain. We need to be able to draw or write a line or two of expression, smell a fresh cookie baking, hear a laugh, beautiful music or merely your breathing in a dampened quiet room… or the voice or note from someone special. Each new morning reflecting on all the goodness that you are learning in this life while also putting to rest the challenges. Our lives are full of little pieces of Grace that add up to a full life of people, places, things and above all love…knowing that there is a higher power who cares for you and will take you into another heavenly realm one day. Knowing that when you fall asleep, God will be awake and will answer all of your prayers.
At my last appointment, I got word that my blood work looks great and that I can get off of all immunosuppressants! No more prograph, magnesium or Bactrim antibiotic! I am completely thrilled that I don’t need to come back to the clinic for two months!! Thank you all for your part in lifting me up in prayer and positive thoughts! I could not have done this without such positivity surrounding me! Only 3 months until I get to reach out to my donor!!! Love, Love, Love! Love for love:)
As I reflect, here are some fun pictures…
Lots of good things have happened since my last post. “Every Cell is Well!” I had a clear PET scan a month ago! I had a colonoscopy to remove some irritated polyps and it’s all good. Continue reading “A Long Overdue Update”
I’ve been having stomach/colon issues off and on for a week. At my appointment with my doctors on Monday, my Eosinophls were high again, and with my stomach issues on top of that, they were concerned. Continue reading
It is the morning of day +51! I’m sipping a little coffee this morning hoping it goes down ok. I am calm and meditative and taking some time to pray for what and who comes in my mind. Continue reading “Every Day is a Winding Road!”
The latest from Libby: I’m feeling pretty good. Just finishing lunch at California Kitchen after another positive appointment and labwork at Emory.
Dr. Waller popped in as a surprise. He said that he just wanted to say hello since I was always so fast coming in and out. He said that if you have not had to see a doctor yet in the clinic then you are doing great! He said it twice! Joel, the PA, had been in and although there are a few blood counts are low and a few that are high, he said my blood work looks perfect! Of course with caveats! Evidently at day 44 it’s perfect!
Still feeling shaky at times with off and on nausea and lots of fatigue. I’m hoping the fatigue will diminish as I continue with my cardio/full body fitness plan. Yay, I gained two pounds back since Monday! I don’t want to lose any more muscle mass than I already have. Eating more calories each day even though I have no appetite or taste seems to be working.
What a great day! Praise the Lord!
Every Cell is Well!
The news is all good after clinic today! My new immune system is performing really well. All of my blood work looks great for this stage! I did not need any IV fluids. I am at day + 41! Continue reading “See, I am doing a new thing! Now it springs up: do you not perceive it?”
On day 30 after the Bone Marrow Stem Cell transplant they took blood from Libby to determine the progress of the engraftment process and determine what percentage of the blood in my body is still hers and how much is the donor’s. They check for 2 compartments including T cells and B cells. This is called Chimerisms.
The results came in yesterday that she has 100% donor T cells and 100% B cells. This is a great thing! She is so excited! This is a really good sign that everything is going great! The mood around the house after this news was celebratory!!!!
Thank you for your continued prayers for her body to accept her new cells and that they flourish, that her side effects of nausea and fatigue are well managed, and that her donor is thriving! Every Cell is Well!
Here’s a quick little update from Libby below. As you can see she is right on track, but isn’t feeling great and still needs your prayers!! Continue reading “A Brief Update from Libby”