Monday, June 05, 2006
Update as of Monday, June 5, 2006
We are back in Cleveland now. It is great to be back. When we pulled in the driveway and got out of the car, the boys, of course, took off running. Eddie was already on the tricycle and heading over to our neighbor’s house. Our neighbors immediately came over to welcome us home. I can’t say enough about how much they mean to us. I was feeling a little bittersweet about leaving St. Jude’s. I felt a little scared about leaving our comfort zone down there where we could be with parents who understood what we were dealing with and where Maria could look around and see that she wasn’t alone in her battle. I was afraid to come home to, as Ed puts it, “deer in the headlight looks”. I have to say, however, it has been just the opposite. So many wonderful people welcoming us home and making us feel truly loved and cared about. Thank you for making it seamless for us.
Maria couldn’t wait to get back to school. Even though she had radiation and a flight home the day before, she was still up at 5:00 (4 a.m. Memphis time!) asking me if it was time to get up and if she could get her uniform on. She couldn’t contain her excitement. She was smiles all day. That’s good enough for me. Her life, as she sees it, is normal again and that is what is special for her. She just wanted normalcy. No fanfare. Just to do what she always does. For her, that means everything is fine. That is where she wants to “live” and so she shall.
Like so many of you out there, our friends at St. Jude’s have touched our lives in ways that we will never forget. We will miss our friends at St. Jude’s, but we will keep in touch and hopefully see most of them as we go back down monthly for doctor visits, etc. They are always in our prayers, as all of you are.
As Ed and I met other families at St. Jude’s and got to talking with them it became apparent to us that Maria’s prognosis was not shared by most. There are incredible cure rates for many of the patients. Most of our friends, ironically, have children who suffer from medullablastomas. I think the cure rate is 83%. Their chemo is for 4-6 months during which they stay down at St. Jude’s. It is difficult. Families are split apart during that time. Though it is an awful thing to undergo, with the cure rate it is obviously worth it. Ed and I could only hope for such a sentence. I feel great happiness and hope for our friends who are looking at this good cure rate and I pray for their courage and strength. Unfortunately, I also feel overwhelming sadness because of Maria’s prognosis. When asked about Maria I would tell the parents her diagnosis and they would reach out to me. I am thankful for that. One Mom, Bettina, was just such a person. I talked with her in the waiting room as I was waiting for Maria to get out of radiation. On her beautiful daughter Brenna’s website she writes:
Today I realized (once again) just how blessed we are. I met a mother in the radiation waiting room and asked about her daughter. I had seen her and her husband around the hospital, but I knew they weren’t staying at the mchouse, so I hadn’t gotten to really talk with them. I got that chance today. Her daughter, Maria, is six years old and has a brainstem tumor that is inoperable. It had such a long name that I can’t even attempt to spell it. It’s even more rare than Brenna’s ATRT and the doctors have said that Maria maybe has ten months left. There isn’t a cure, but she’s doing chemo and radiation to help prolong the inevitable. The amazing thing is, that if you just saw her in passing, you would never know that she was dying of cancer. She looks like a normal, healthy little girl, and my heart aches for her family. The mother said that she’s not giving up hope. With tears in my eyes, I just told her the only thing I knew to say, that I would keep little Maria in my prayers. God can work a miracle. The inoperable is not impossible for Him. I hope and pray that for every child here. At the same time, though, I know that I don’t see the big picture, and sometimes His plan is beyond my understanding; way beyond my understanding.
Thank you Bettina. Your words strengthen me. Maria and I talk about Brenna and how we miss her little dance after treatment is over. She is a special little girl.
Another family we met my first day at St. Jude’s was a Mennonite family. Their daughter Bethany suffers from medullablastoma too. The mother, Rosanna, has a smile larger than life, just like her husband, and I just loved them all so much. Rosanna said something to me that I’ve been struggling with since the diagnosis. She said if we let go and trust in God we can find peace in our hearts. This is so hard for me to do, but I know that it is what I must do. All of you help me to do this. I want you to know that.
In my Peace Corps days I learned not to write home when you are having a bad day. I am trying to follow that rule with this website as well. What I do want to say is that on those bad days, when I’m not feeling so upbeat, I find myself going to the website and to many of your cards and letters for comfort and strength. They help me. Thank you. Thoughts and prayers from many we know, many we haven’t seen in some time and many we don’t know help us greatly. We appreciate that. Some of you thank us for letting you be a part of our lives, but Ed and I really thank you for being on this journey with us. We are so blessed you care and pray for us. I don’t know how we’d ever do it without you.
Do you see what I see? So much goodness has come about as a result of Maria’s illness—if this is even possible to believe. It is all bigger than we are. A friend of mine told me when I went to pick up Maria from school that she was glad we were down at St. Jude’s but sad that we were unable to see the numbers that had shown up for the rosary the day before. I feel so much strength in this. I know the power of the rosary and the fact that so many of you have been saying this for Maria is comforting and encouraging to us. Please continue to keep this prayer alive in your own lives. Please continue to radiate Christ to others wherever you go. What a difference you will make.
Hope is something that I am learning a great deal about on this journey. I will always have hope. Your prayers strengthen my hope. I know a miracle is possible. I am happy with this possibility.
Much love to all of you,
Ed and Megan
Posted by Rick at Monday, June 05, 2006