Introduction

We pray this journal ministers to the hearts of those with VHL and also to the families who support them.


The Beginning

We all hear those familiar words in the wedding vows "in sickness and in health" and "til death do us part," but for many we skip past those and pay more attention to the celebration that surrounds the joining of man and wife as one. The day after our honeymoon, Gaston went into the hospital, endured a 13-hour surgical procedure, went to CICU for 3 days, went to a regular room for the next 6 weeks before being released to go home still in a very weak state with more recovery to come. When the surgeon came out of the OR and told me the next 24 hours were very critical and Gaston may not make it, suddenly, those words in the wedding vows became etched in my mind and will forever.

In preface to this surgery...several months before our wedding, tests revealed tumors in Gastons' adrenal glands called pheocromocytoma.They cause the blood pressure to rise, secrete excess amounts of adrenelin that causes anxiety, headaches and palpatations. He had surgery to remove the tumors and the surgeon left slivers of adrenal glands to hopefully keep Gaston from having to take replacement hormones. That worked for awhile and he felt great, but just before our wedding the tumors grew back on what was left of his adrenal glands.  Tests also showed a suspicious spot on his pancreas so more surgery would be scheduled as soon as we returned from our honeymoon. So, we had our beautiful wedding and left for our honeymoon knowing when we returned he would have more surgery. Little did we know what an adventure and lifestyle change God had in store for us!

We both grew up in church, had been "introduced" to God, but we never knew Jesus personally as our Lord and Savior. We showed up in church occasionally, sat in the pews with stares on our faces, just going through the motions. We were living to please the world and our own sinful desires at this time in our lives. Our lifestyle involved drinking alcohol until we passed out and were much too hungover for church on Sunday mornings.

And so begins a journey of God's miracles and a new faith being born in Gaston and myself that continues to deepen more each day. We hope through telling our story of dealing daily with Von Hippel Lindau will encourage and strengthen the faith of others with this disease. What first was thought to be very rare, they're now finding out is much more common than they thought.  So, there are more and more people trying to process a diagnosis of VHL.

Please check back frequently as I will share how God and HIS perfect timing brought two lost souls into the Kingdom with His mighty works glorified through a disease called VHL.