FRIDAY, JUNE 17, 2011 9:11 AM, MDT
Our MiaBella has Giant Cell Myocarditis.
It is a very rare form of myocarditis and from the statistics available, Mia is so far a very fortunate young lady.
To give you an idea of how fast things move around here, we received a diagnosis from the pathology deptartment last night. As they were telling me the news, I remembered a post from a father of a fellow Rowland Hall student and fellow Jazz Band member of Mia’s….. a Dr. James Milovetz.
I immediately pulled out the computer and scoured the guestbook entries until I found his post. Thank you James. I remember telling Heidi that I was going to call him the next day….. but that was June 3rd, and we had just been told that Mia needed a transplant if she was going to survive, and I just……. forgot. There was too much going on, I guess.
So, an hour later while at dinner I texted Dr. James Milovetz, and before I could put a bite of food in my mouth, he was calling me. He mentioned that he knew a Dr. Les Cooper, from the Mayo Clinic, who just happens to be the best authority or cardiologist on Giant Cell Myocarditis in the Country, if not the world. Dr. Milovetz was so kind and willing to help in any way he could. He called Dr. Cooper at his home (I think in Minnesota?) and connected Dr. Cooper with Mia’s doctors up at P.C.M.C. here in S.L.C.
I have since tried to contact Dr. Cooper myself, and am awaiting a call back, at his convenience. I do know that before 10:00 last night the doctors helping us with Mia had already spoken with Dr. Cooper and they are doing everything they can to design a plan to help treat Mia.
So, Thank You, Dr. James Milovetz, for taking the initiative to contact me/us, and for whatever reason you had for doing so, for unknowingly facilitating contact with the world’s foremost authority on the rare this rare form of myocarditis. It should be pointed out that when the diagnosis was made, the doctors up at P.C.M.C. already knew who Dr. Les Cooper was, and were in the process of contacting him as well. But without Dr. Milovetz, I doubt they would have spoken last night! Dr. Cooper was heading out of town TODAY….. and probably would not have been available until next week? Who knows? ….. that’s fiction. But the point is, once again, the power of Love and Caring, and the far reaching fingers of Mia’s community, the Rowland Hall Network, and the beauty of people who care for each other.
So…… we know what happened to our Mia. We just don’t know why? As the cause of Giant Cell Myocarditis is unknown? Just theories. But they are working with some ideas on how to best treat it, and I am going to choose to do my best to trust the doctors to do the best for Mia……. and me and my eyes and ears are not far away. They may be growing sick of me up there…… but she is my daughter. She means the world to me. I can’t explain. So, Heidi and I are her advocates. Alongside some of the most amazing nurses in the whole freaking world!
Last night, a nurse….. let’s call her “Mindy” for fun, solicited help from some of her fellow friends/nurses/techs, etc, and they did for my daughter something she hasn’t had done in over 20 days. They carefully! moved her into the p.t. chair we mentioned a few days ago….. and washed her hair! gave her a bath!! soaked her feet in warm soapy water!!! Did her hair!!!!….oh!! you should have seen Mia! She was SOO happy! She did the best she could to smile! The ladies in there had a Grand old time! THey sang, chatted, told stories…… they made Mia feel like a little girl again. Or, a young lady, I should say. But a ‘person’, not just a ‘patient’ or a number, or a statistic, or a problem.
It was so sweet. And we rushed back from dinner just in time to see her and revel in the moment. We carefully! moved her back into bed and while Heidi cuddled with her, I read her current favorite book to her until it was time to sleep. She had so much fun, after a really horrible day, that she didn’t want to sleep. But with listening to Paul Cardall’s latest music (http://www.paulcardall.com/ which he dropped by personally!! Thank you Paul! I hope Mia and I can meet you and maybe she can even play a tune with you on her trombone! or maybe take a hike up Mt. Olympus?!! I’d love that!) we were able to get her to sleep.
It turns out the night was a rough one. She didn’t sleep long, or much. And She’s sleeping right now. Her lungs are fighting. SHe is fighting! and everyone is doing everything they can for her. I just never knew that we’d have to battle so hard AFTER the transplant. I thought that was the toughest week ever! and that she’d be on the downhill side of the mountain. Man…… this is hard. SHe’s so sweet. She tries so hard. She listens to the nurses, to the respiratory therapists…… she never complains. She never even cries. But I do.
Heidi and I are home…… taking showers and heading back up. ELi is with his cousins. Friends and family continue to support us, and Mia. We thank you, again.
One person kindly said, “Tom, you need to be ‘O.K.’ What can I do?” I told her, “I’m not upset (with you), but I’m NOT ‘O.K.’. This is NOT ‘O.K.’ And nobody can make it, or me ‘O.K.’ “.
So, no offense to anyone. I’m not mad at anyone. And I am not unappreciative of your love and support. ……. I can’t explain it, but there’s nothing anyone can do to make this ‘ok’ for me. I have to find that place myself. And it’s a difficult road for me right now.
I just need to find that place……. where I somehow found courage and faith, to do the things that other people said I couldn’t.
Thank God no one has told these things to Mia. You can see it in her eyes…… she even tried to do a little dance last night amid the fun when I started singing Beyonce’s “All the Single Ladies” song…… it was so cute! Her shoulder shimmy and shake!…. it brought smiles, laughs, and tears to everyone’s eyes in the room.
You guys……. she’s so beautiful. She’s my baby.
I love her so much. It kills me.
Mia, please come home with me. Please.
Comments on: "Diagnosis and "All the Single Ladies"" (6)
Dear Miabella & Family,
Just wanted you to know that we are all praying for you & your family. I have added you & your family to our Prayer Chain Ministry at St. Matthews Church. Prayers are powerful, and we are a caring, loving community. i will pass on this info. re: your Miabella to our parishioners. May the light of God surround her, and the power of God protect her, and give strength and wisdom to all who are helping your adorable daughter,
St. Matt’s Church
What a beautiful way to tell your story.
I am a friend of Joe and Carolyn’s in AZ. It just so happens that our good friends’ daughter had THE SAME diagnosis happen to her just last year. She is 16 now. She too needed a heart transplant and is doing well today. Out of the blue, no rhyme or reason.
I have made them aware of your situation and should you need someone to talk to, from someone who has been there, both mom and daughter are 100% open to it. They are avid members of an awareness campaign for this disease and have many contacts and information they can share.
Our thoughts and prayers are with you, beautiful Mia and your family. Let me know if I can be of service in connecting your families.
I’m out of town and will miss your celebration for Mia on Saturday, but I’m sending loving thoughts and hopes for giant steps forward in her recovery. She is the model for all of us…to never give up and to keep fighting.
Sending peace + love + light to beautiful Mia from Vancouver. She is in very good hands at PCMC & I love they made her feel like a princess. Thank you for sharing your words with all of us. ::
What a sweet account of such a simple event: A BATH!! Sure makes you put your life into perspective. I am so glad she is being treated so well by the nurses and docs.
And yes, trust the Docs– D says everyone is working extra, extra hard: extra looks at her labs, extra peeks into her room, and extra searches in medical journals to make sure they haven’t missed anything!! LOVE YOU!!!!!!!!!
love and light, love and light, love and light……