Thank you for all of your words of support and encouragement! We are so blessed to have such an amazing support system!
This week has been filled with ups and downs, we have been to the hospital three times for platelet transfusions and we will continue to go every other day next week. The reason that her system keeps loosing the platelets is because she has something doing on in her body called HUS. For once, there is something going on that I can't really explain! It tends to happen post transplant and it will correct itself over time. This is only dangerous in cases where Erica would bleed . . . hence the intensity of last week and the bleeding from the liver biopsy.
So we are back and forth to UCDMC and quite frankly, it is nice to get out of the house and Erica loves her time in the car. She is big into trees and flowers right now. She points to them and sniffs her nose and then says, "mmmm" (like, oh, those smell so good!). It's funny because we are looking at flowers in our back yard . . . from inside the house!
Personally it has taken this entire week to recover from last week. We were all very tired and with the blood counts continuing to look uncertain, there was just no ability to relax. I'll share that the main issue right now is getting off of two of her medications; the steroids and the cyclosporin. These are causing continued toxicity to the liver, as well as many other side effects. We dropped down the dose of steroids again this week and we are just praying that the GVHD stays at bay. Please pray that prayer with us!
Blessings to you!
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15 comments:
Megan-I, too pray that the GVHD stays at bay and that the appropriate combo of drugs reveals itself quickly. I am always here for you. Just, right this second, I happen to be 3,000 miles from home--but I am just a call away until Wed. I love you all and wish there was a way to take the pain away from you, Bob and Erica. You are surrounded by friends and family (and strangers too) who adore your baby girl. Much love!
Megan, I am sorry to hear that all of you have had to have such a intense week, but very happy to know that the GVHD is still at bay. I was just listening to Alicia Keys song "everything is going to be alright" and thought of you and Erica. All Our Love, Kerri & Matt
Myself along with the rest of the Redwood Wine Country Team in Training group are sending you tons of love.
Sarah b
Meg, Bob and Miss Erica,
We are praying for the GVHD to stay AWAY... and for the liver to get some much needed relief from all the meds.
We love and pray for you!
Jason, Andrea, Lauryn & Jimmy
Hi Megan, Your Sutter family continues to monitor Erica's progress. We check with each other on a daily basis to find out who has checked the website for Erica's current blog. You have prayer in numbers here and will until the day Erica is well and has made her first mud pie!
I truly miss you Megan and wish you were here. Much love to Erica.
Helen
Earl & Meg,
We are thinking and praying for Erica and you two ALWAYS. Erica is such an inspiration and I know will continue to grow stronger each day. Stay strong for her as we know you both are and will!
With love - Bob, Heather and the girls
Megan, Bob, & Erica,
I try to check this almost everyday to make sure that Miss Erica is doing ok. We are hoping that that GVHD stays where it is and starts to go away and her liver can heal so that she can come off some of those meds. She is a strong girl and proves to know what she needs to do to fight this. I love what one of your friends said about how she is an angel sent her to say "this is how you fight...watch closely" I think that says it all. Erica has shown all of us that when there is a will, there is a way!! Fight on sweet girl, we are all standing right here beside you!!!!
We love you,
Alison, Scott, & Samantha
We are praying for GVHD to stya away and sending love, light and hugs. We are praying for your comfort and healing. Your family is strong beyond words and we want you to know how much we LOVE you. PLEASE keep the updates coming. Love Nick & Tuck
Megan, I met your dad, Tom, at a conference last week. I am the mom of two little girls - one is 21 months and one is 4 months. We started chatting about kids, and Tom shared your story with me.
Erica has touched my heart. She is a precious, brave and beautiful little girl. Tom shared stories of her positive attitude and grace of spirit. Please know that I pray for her speedy recovery on a daily basis.
Your courage and strength amaze me. You are eloquent in the face of a terribly difficult situation. I pray for peace and strength for you.
I am so glad to know that you, your husband and Erica have such a strong and supportive network of family and friends to stand by your side at this time.
Take care - Jennifer
Sweet Erica... you are so strong and brave! You have a great lesson to teach all of us with your positive outlook and love of the "little things"... even if they are on the other side of the window... you still appreciate them all the same. Your spirit and courageous heart inspire me everyday. Megan, Erica is a reflection of your love and example (Bob too!)... I can't say enough about you as a mom - AMAZING! Our prayers are with you everyday. All our love,
Jennifer, Ryan & Brayden.
We share your prayers with you. Please grab strength from all around you knowing how much you are being thought of each day. I hate to hear the stress and intensity of your latest hospital visits. The inspiration I draw from Erica and your family helps with my days. We love you and pray for GVHD to stay away...far away.
Love you, The Mitchells
Bob & Megan,
Its impossible to put into words the experiences that you have you have endured as new parents. I am amazed at the courage and strength that the three of you have displayed under these conditions. I wish that it goes away quickly and gives you the break that you all deserve.
Mani
Dear Megan and famiy, your friends write so many beautiful words. I check in on Erica daily, you are always in my prayers and thoughts.
I read something in "A New Earth" that made me think of you. When we were going through treatment I think it might have helped me. Eckhart Tolle talks about suffering, in Chap. 3. He states...Humanity is destined to go beyond suffering, but not in the way the ego thinks. One of the ego's many errononeous assumptions, one of its many deluded thoughts is "I should not have to suffer." ...or "My child should not have to suffer." That thought itself lies at the root of suffering. Suffering has a noble purpose: the evolution of consciousness and the burning up of the ego. The man on the cross is an archetypal image. He is every man and every woman. As long as you resist suffering, it is a slow process because the resistance creates more ego to burn up. When you accept suffering, however, there is an acceleration of that process which is brought about by the fact that you suffer consciously. You can accept suffering for yourself , or you can accept it for someone else, such as your child or parent. In the midst of conscious suffering, there is already the transmutation. The fire of suffering becomes the light of consciousness. - E. Tolle pg. 102
Megan, I think you are fuctioning exceptionally well at this. You are still smiling bright and that's the reflection that Erica sees everyday. Light radiates from your family. Much love to you, always, Camie
So glad to hear that Erica as pulled through last week's upset. I am so sorry to hear that you had to go through such an intense moment with Erica. I only hope that she continues to get better and that she slowly gets off the medicines. She is my inspiration with Team in Training and her picture will be right beside me on race day helping push me through the hard times of the race, even though what I am going through is NOTHING compared to what she has been going through. My prayers are with you everyday! Take care.
Megan- We will keep praying that the GVHD will stay away! What a tough week. I wish that we could do or say something to help the hurt go away. You and Bob are truly amazing and it is reflected in Erica's determination and sparkle. You made it through last week and Erica continues her fight. We are thinking of you all and keeping up the positive thoughts. Love, Melanie
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