Well, technically it’s not new. It has just returned… And even that isn’t true. It returned about 1.5 years ago, which was about six months after her tumors were first removed. Yes, TUMORS. My little girl has tumors. Tumors growing out of her back making her look like the daughter of gorgeous Cinderella and the Hunchback of Notre Dame.
I want to say it will be alright. I want to believe they will just miraculously disappear and heal themselves. However, I’m a realist. I know what she has won’t just completely dissappear. I also know that with all the modern medicine there is, there is also a treatment out there that can cure her. There has to be. Only they haven’t found one yet.
So what does she have? Diva had a rare disease called lipoblastomatsis. Basically, it’s a non-cancerous tumor made of fatty cells. They grow and seep into muscles, fuse joints, and leak into organs.
At her first surgery, the doctors discovered it wasn’t just a simple mass. What they thought was a tumor sitting onto of her muscles, really was a tumor that had grown down her spine, into her upper back muscle, down and around her left side and into her skin. Because of its extensive nature, lack of education on the disease and other “issues” the doctor choose to not remove it all. However, the problem with the disease is if you don’t remove every last tumor cell it will grow back. It did.
Last Tuesday she had another MRI (read about that experience here). After, they showed me the results.
The tumor has spread deeper into her back muscles, grew back down and around her left side and is now growing onto her front. And what we thought was 3 seperate tumors, is one. One large tumor.
In order to figure out how to help her they are reading journals and calling doctors across the nation to see if anyone has suggestions or ideas on how to help her. Next week they should contact us with a plan. Until then, pray. Pray for her to understand what is going to happen, pray she continues to not be in pain, pray they find the best treatment with the most remarkable outcome. My little girl is worth it.
6 Replies to “Be Brave: Accepting A New Diagnosis; Lipoblastomatsis”
Praying so hard for your daughter and for all of you…….for strength, and comfort and healing. I didn’t see her age listed, but I hope she understands without pain what is going on. She will probably be your comfort as much as you are to her. God IS with you. May that knowledge give you the peace.
Thank you so much for your words and prayers.
My baby girl has this rare disease too, would love to exchange email with u so we can talk. Hope to hear from you.
Yes, Please! email me at firstname.lastname@example.org
Kelly, you are so strong and would never know the trials you face daily by the way carry yourself and keep a positive attitude! Your faith definitely shines in everything you say and do – it breaks my heart to learn of the things you’re facing…I hope you’ll let your new MOPS family help – we love each other like sisters because we are all sisters in Christ! I’m sending love and prayers your way – keep on keepin’ 🙂
Thank you so much Kimberly! I shared with my MOPS family exclusively updates because I know you will all truly understand. I am so glad I found you all.