In the year 2000, Gaston's endocrinologist had enough medical pieces to the puzzle to suspect Von Hippel Lindau (VHL) disease. Genetic testing confirmed it. Now we knew we were dealing with (at that time) a very rare disease with little information published . Since VHL is inherited, Gastons' mother, father and two brothers also had to be tested. All tested negative so apparently Gaston is the one it begins with in his family tree.
At this point, we began a tremendous amount of Internet research and found what we could about VHL, the best way to treat it, and where else in the body to screen for other tumors. This is when we located the website, vhl.org . It became a very valuable tool for us as well as Gastons' team of doctors (which at this point consisted of a primary care physician, an endocrinologist, a urologist, and a neurosurgeon). Through this website, we found out the tumors can show up in the retinas of the eyes and in the hearing canals. So, a retina specialist and an ENT (ear, nose, throat) came on board with the rest of the medical team.
Additionally, we found out VHL patients have a 75% risk of developing kidney cancer so cat scans of both kidneys are done annually. In 2002,Gaston's annual cat scan showed a suspicious spot on one of his kidneys. That night at church, our friends gathered around us, placed hands on Gaston, and asked God if He would in His great mercy heal Gaston. A few days later when a follow up ultrasound was done to determine what treatment would be necessary, there was nothing there! The doctor was baffled as he looked at the cat scan that earlier showed a spot. We weren't baffled. We knew exactly what had happened. God restored full health to that kidney. He had performed a modern day miracle! The miracle showed us loud and clear He had a plan for Gaston's life. Gaston had not completed his mission here on earth just yet.
Our next hurdle with VHL came a couple of years later when blood tests revealed elevated hemoglobin levels. Polycythemia was the diagnosis. This is when the gene that determines when the bone marrow has produced enough red blood cells becomes defective. Bottom line: Gaston's body no longer knows when to quit making blood. At this point, a hematologist joined the ever-growing team of doctors. Gaston sees him every three months for blood work. When the hemoglobin levels reach a certain level, a phlebotomy (a large needle is placed in his arm and excess blood is removed) is performed. What a blessing that this too can be done in a manner not so invasive. The danger of too much blood in the body is that the blood thickens which can cause blood clots, high blood pressure, stroke and even heart attack.
As God tells us in Jeremiah 29:11 (NIV) "I know the plans I have for you says the Lord. They are plans for good and not for disaster, to give you a hope and a future." Yes, Gaston and I have times of emotional trials with the ugliness of this disease. Sometimes, we question "Why us, Lord?" However, we have fully trusted God to lead us and he has not let us down so we will continue to be obedient servants. Gaston's disease has allowed us the privilege of experiencing Jesus Christ on a closer, more intimate level than we ever thought possible.
I have more miles to cover in our journey and I hope you will continue the walk with me. I also pray that anyone going through an illness or whatever situation you might be in will find some comfort in traveling with us....
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