Johnson's Family Medical Fund

It would take a novel to sum up the past twenty years, but I will give the “cliff note” version my best shot….

Steve and I married right shortly after college and three months later found out we were expecting twins.  Lindsay and Taylor were born and life was perfect.  Six weeks after their birth our world was turned upside down.  Doctors discovered that Lindsay was born with a very complex congenital heart defect that was actually a combination of five defects no one had ever seen in combination before.  Initially they thought a heart/lung transplant would be her only treatment option, but after presenting her case to a group of cardiologists from around the world a surgical plan was devised for her.  On paper it looked great, but no one thought she would actually live through this extensive repair.  At that time we were told she “may” live until age 3.  Nine heart surgeries later and multiple cardiac procedures as well as many complications and hospitalizations… it is by the grace of God Lindsay is now 19 years old and attending college in Arizona with her sister Taylor.  I wish I could say that this was the end of her story and our story, but it is not.  Lindsay is scheduled for another heart surgery in December and will continue to need surgery for the rest of her life.

We went on to have three more girls; Kali, Lexie and Mackenzie.  Shortly after Mackenzie’s first birthday we got the carpet ripped out from under us again.  Mackenzie was diagnosed with Pre B cell Lymphoblastic leukemia on January 16, 2004.  Her bone marrow responded well and she quickly went into remission. Unfortunately, with leukemia, it is a long road, and even when remission occurs, a 2 1/2 - 3 year protocol of chemotherapy must be completed. The first year was rough, as Mackenzie endured many, many complications.   On April 18, 2005 we took another blow when we received news that the leukemia was back even though she was still in treatment.  Mackenzie's relapse occurred in her spinal fluid and she enduring ten more months of more intensive chemo as well as cranial/spinal radiation, followed by another year and a half of maintenance therapy. Her doctors told us they thought she had a 40% chance of beating this thing. It was a crushing, heart wrenching blow to our lives. But we didn't know the storm wasn't over. Five months into maintenance, Mack relapsed again on January 18, 2007. This time the cancer was back in her bone marrow and the doctors predicted she had less than 10 percent chance of survival. We uprooted our family and left suddenly for Cincinnati Childrens Hospital where she was inpatient for over six months. Four months of intensive chemotherapy and finally an unrelated umbilical cord blood transplant on May 15, 2007.  Mackenzie continues to be cancer free today and we praise God for His hand in healing our daughter.  Although she lives a pretty normal life for a 12 year old, she requires a lot of follow up from the late effects of her treatment.  Currently we are in the middle of an insurance battle through appeals for her growth hormone therapy and she requires MRI’s of her liver every 3 months to monitor benign tumors that formed from her radiation treatment.  She is such a joy in our life and a hard worker trying to overcome significant learning disabilities from her treatment.

We surely thought that was enough for one family, but shockingly we find ourselves hurting in the middle of “the valley” once again.  On October 22, 2014 our daughter Lexie, 14 years old, was diagnosed with Pre B Cell lymphoblastic lymphoma after removal of an enlarged lymph node behind her ear.  We are packing our bags again and heading back to Cincinnati to begin another 2-3 year treatment course of chemotherapy.  As I write, I have no idea where this path will take us, but what I do know is that I can count on God to “show up” and care for our every need.

We continue to remind ourselves that life is not about numbers or statistics... it's not about someone's best guess at whether or not my child will live or how long she may survive. Rather, it's all about a plan and a purpose that God has for our lives. And so we surrender it all to Him and continue to place all of our hope in our great God, trusting in His constant care. His faithfulness has been SO evident in the many ways He has and continues to provide for us on this long and exhausting journey. We praise God every day for our girl’s lives and for the miracle of His healing hand upon them. We are grateful for all the changes that have occurred in our own lives through this journey… And we’ve learned to appreciate the suffering as it has stripped away all the worldly things of our lives that are meaningless in the big picture.  We are so grateful for all of our family and friends who have stepped up to the plate and willingly picked up a portion of our burden to walk with us along the way.  We couldn’t do this on our own nor do we want to.   You are another example of His outstretched arms and we pray that you will be touched by our journey and blessed through your love and support for our family!