The Journey's Outcome

Two years ago today, our family life changed dramatically.

In many ways, the changes were very difficult. In other ways, the changes strengthened us and drew us closer to each other and to God. But undeniably, the changes were profound, and each of us experienced these changes in different ways.

Two years ago today, I took TP to our family physician because she had been experienced extreme fatigue (a typical teenage state of being) and some fluid retention in her ankles. Her tests revealed a kidney infection, but the doctor said that the protein levels in the urine were very high, so he was going to run a couple of other tests to see what would happen. So, it all seemed simple enough to me - just put TP on some antibiotics and she should be okay.

I wish it had been that simple.

Three days later, the test results came back in. And the doctor expressed concern that a lot more was going on within TP's body than just a simple kidney infection. He was going to refer us to a kidney specialist at Children's Hospital, and the soonest we could be seen was the following Tuesday.

The following Tuesday came, and my husband and I took TP to Children's and met with a nephrologist, who ran some more tests. He suspected that TP had nephritis, secondary to Lupus, but the only way to confirm it was to do a kidney biopsy. He was going out of town the following day, so he said we could wait until the next week, or we could see one of his associates sooner. Of course, we opted for the "sooner", and the biopsy was scheduled the very next day with Dr. B.

When we got home that afternoon, I did tons of research. The more I read, the deeper my dread and anxiety became. This was not a disease to mess around with, at all. I went to bed with a heavy heart, saying prayers to our Lord that TP would be safe tomorrow during the surgery.

We met Dr. B. for the very first time the following morning, right before TP was wheeled down to the operating room. He is a very kind and gentle soul, whose calm demeanor is both comforting and reassuring at the same time. He is also tops in his field, and has done extensive research about this disease. He explained the procedure to us in detail, asked us several questions, and then asked us if we had any questions. We didn't at the time, because we still weren't certain of TP's exact diagnosis or prognosis. We were able to go down with her to the operating room, where we were greeted again by Dr. B. and a great nurse who was wonderful with TP. As they put the sedative into her IV and she grew drowsy, I stroked TP's hair and sang her favorite song to her as she fell asleep. Once she was asleep, I smiled and Dr. B. and said "Take good care of her", and he smiled back and replied that he would.

The wait seemed like an eternity, even though the procedure only took less than an hour. Dr. B. found us waiting for him in TP's room, where he confirmed the diagnosis of Lupus nephritis. He said he was going to call in the rheumatologist on staff, Dr. R. When I heard that doctor's name, I was stunned. It was the same doctor who had treated TP's confirmation sponsor when she was a teenager! This young woman has several autoimmune diseases, and is now married with two children! She has been a constant source of inspiration and support for TP over the years.

Dr. B. came back a couple of hours later with Dr. R., and they discussed the treatment regimen for TP, beginning with huge doses of steroids in liquid form (called Solu-Medrol) given through an IV. However, because TP had had such difficulty with getting a good vein for her IV's, they were going to do yet another surgery to place a port in her chest, whereby the medicine could be administered via that route. They were going to give her several doses of the Solu-Medrol over the course of the next few days, and then begin her on chemotherapy.

Thus began the journey of living with this chronic illness. I don't have it in me right now to chronicle all of the hospitalizations TP has been through, how many infusions of the Solu-Medrol she's had to endure, how many times she has had blood drawn, or how the medication side-effects affected her physcially as well as emotionally. What I do know is that living with this chronic illness has brought about something amazing, which I never anticipated, usually because when a person thinks about living with a chronic illness, the negative is often emphasized and the positive is often overlooked.

The most positive and amazing outcome of this journey is how close TP and I have become. We've always had a very special relationship, but this illness drew us closer. I believe it is because she relied on me for so much while so gravely ill - I stroked her head when she was vomiting, I held her hand while they were trying to find a vein in which to stick a needle, I explained procedures and medications to her, I learned how to give her shots, I tried to answer her the best I could when she would ask "why me, Mom?", and I held her and comforted her when she would cry out against the physical and emotional turmoil she was experiencing.

TP is now in remission, thank God. She looks so healthy, so beautiful. She is about to start a new life at college in the fall. I want the best for her, no matter what. I want her to strive for her dreams and achieve them, no matter what. I want her to know no more fear or pain - but I know that is unrealistic, so I want her to be able to cope with whatever comes her way. And I have no doubt that she will cope. She will perservere. And she will, with God's grace, not only survive, but live the rest of her life being guided by His light. She will touch others with her compassion and kindness and empathy. Did her illness help her become the person she is today? Without a doubt.

And TP, I know you're reading this right now. I love you, sweetie! May you always keep my love in your heart, no matter where you go.