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Welcome and thank you for being here. This journal about our daughter Emma was started in the hospital and I am updating it as I can in between caring for her and trying to process what has happened. Please bare with me, and please don't leave us in the difficult journey. Your support, love and kind and encouraging words help us. Emma reads the updates as she is able and draws strength from you to keep going, to get better and most importantly to NOT GIVE UP!!! We want her to know, she is NOT ALONE and that she does not have to go through this on her own, that this is a safe place to show her feelings and share them. I also started a Facebook Photo-album (https://www.facebook.com/media/set/?set=a.285777855103618&type=1&l=e800e3bfbf
)for her. I hope to connect with others so we can support each other or that perhaps other families who are wondering what is wrong with their child or perhaps they are seeing symptoms but the doctors can't seem to figure it out, this may help!
Our baby went from being a healthy girl to extremely sick. She was diagnosed (June 8, 2016) with granulomatosis with polyangiitis (wegener’s granulomatosis). My hope is to spread awareness and allow hope, support and healing into our lives. Although we have been trying to determine for over a year (yes, this poor girl suffered with pain, fatigue and a variety of other symptoms that long, and no medical professional up until now could figure it out) that her own immune system which is supposed to keep her alive, is instead killing her.
We have had a grueling journey of doctor visits. After discovering she was severely anemic she was admitted to the hospital Pediatric Intensive Care Unit. She was there for three days where the diagnosis was made after a lot of testing. She also had her first blood transfusion then. We were transferred to the Twin Cities and met with Dr. Rheault at the Division Nephrology at U of M Amplatz Children's Hospital and Dr. Hobday, Division of Rheumatology (which is now also one of her primary docs).
Emma was then admitted to U of M Masonic Children's Hospital in Minneapolis. She received another blood transfusion and a rush kidney biopsy, which confirmed that her kidneys were affected by the disease. She was then put through a series of more tests and bloodwork and procedures, basically testing every organ and system in her body. As I am typing this 6/12/16, we are still in the hospital, where she is on round three of Methylprednisolone and today she is also starting IV Rituximab, a cancer medication that interferes with the growth and spread of cancer cells in the body. Rituxan is used to treat Wegener's Granulomatosis,non-Hodgkin's lymphoma or chronic lymphocytic leukemia. Both the steroid and Rtx have severe and permanent side effect.
We have gone through the unimaginable and our heart is broken and we are shocked, tired and scared... but more so our beautiful angel, Emma.
How can she understand this? She is 12!! She said "why mama? I miss my old life where I could run and jump." She cries at night... I keep strong and I pray we will get through this and make her better. I will not give up and will never loose hope. Often though i think she is even stronger than me. A girl not from this world.
For Emma: It's so dark right now, I can't see any light around me. That's because the light is coming from you. You can't see it but everyone else can.
To be continued...thank you for your support