I HATE VHL!
I remember growing up and hearing the word: VHL. I don't think I truly understood what it meant until my daughter, my oldest child needed emergency brain surgery.
My mother lost her sight when I was 5 years old. She was totally blind after they tried to re-connect her detaching retina. It was 1962ish...
Nothing else came up relating to VHL until my Uncle Bill was diagnosed with Renal Cell Carcinoma...from VHL. We lost him in 1981.
I know that I can deal with anything VHL throws at me. I'm strong and I have tremendous faith and will battle until the end. But nothing...and I mean NOTHING can prepare you to watch your child suffer such pain and endure so many surgeries. Or struggle within the health care system, begging your insurance company to approve treatment or scans or surgeries. WHY DOES IT HAVE TO BE SO DIFFICULT???
My children are my life...and I will do whatever I can to help, to be there, to hold them as they deal with the next blow. It kills me every time.
My son had an ablation done last August to remove a kidney tumor. And just last week he had a tumor and a cyst removed via laparoscopy. The CANCER word is frightening...and we are waiting for the results but already know that it's cancer.
My daughter waits for her son's surgery to be approved. We are and it's scheduled for February 23rd. They call and confirm in the morning the day before...only to cancel later that afternoon because of some insurance SNAFU. ugh!!!! Davonte will have his remaining Adrenal Gland removed. They found the new tumor last summer...and there might have been a chance to salvage his remaining Adrenal Gland had they acted right then...but no, phone calls, referrals, letters and more couldn't make the insurance company move any faster. All hope at salvaging it are fading away...a lifetime of steroids for this 21 year old young man.
My daughter has her own health issues to worry about...she has a brain tumor that needs to be removed but can't because she also has a Pheochromocytoma. Back and forth with the insurance company and worrying about her son's health...
What do you have if you do not have HOPE?