Thursday, April 20, 2006

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.


At 10:32 AM, Blogger HeyJules said...

Seriously. Why do I keep reading your blog when I am at work? Oh my goodness...the tears you have produced in me over the last year!

TP - you go to college and make your parents proud! I live with chronic illness, too and it can be harrowing at times but its no reason NOT to go out there and show the world who you are and what you have to give. Just remember to take life one day at a time and to do the most important things first - leaving the other stuff to fall by the wayside on days when you're too tired or too run down. I'm a firm believer that God will give you the strength you need to to the things He wants you to do, so don't fret over missing a test or not making it to an occasional party. The world will go on and you WILL succeed!

At 2:50 PM, Blogger JodiTucker said...

One of the few times I am reading at work, too......I'll wait to be home next time, too. TP, I hope one day you may meet my daughters. One is one year older and the other is a year younger than you. If you are ever in Akron, OH, that's where we are.
You are blessed to have a mum and dad that love you so much, second only to God! Enjoy the remainder of your senior year!

At 11:42 PM, Blogger Jeff H said...

God works through all things for the good of those who love Him.

At 5:21 AM, Blogger bigwhitehat said...

BWH definition of optomism.

Optomism is taking account of the difficulties you have already overcome and knowing that your present problems will be overcome.

How could the God that parted the sea for you not deliver the land into your hands?

I halfway think that my folks expected me to be wealthy and spiritually bankrupt. Well I have to struggle to make ends meet. But in many ways, I am the richest man I know.

I have confidence in TP.

At 2:31 PM, Blogger Praying for your Prodigal said...

What a beautiful post. My heart identifies with your mother's heart. We always want the best outcome for our children, little or grown. God Bless you both as you enter this new exciting phase of your relationship. Having a grown daughter and son who have already "left the nest"--I understand what you may be feeling. How beautiful to have such a loving relationship that will be an excellent foundation for your daughter as she goes away to college!


At 7:50 PM, Blogger Julana said...

God be with you all.

At 11:59 PM, Blogger Gina Burgess said...

Val, what an amazing and truly wonderful testimony to our glorious Lord. I thank you for this.

At 11:15 AM, Blogger Paula said...

What an incredible story of the love and devotion between a mother and daughter. I am so thankful TP is in remission. I look forward to reading about the wonderful things she is going to do with her life. God bless you for being such a good mom!

Love ya!

At 4:57 PM, Blogger Hector said...

What a moving and loving post! Thanks for sharing! What a gift to be able to find the positive even in a situation like this. God gives us so many opportunities!

At 1:23 PM, Blogger Darlene said...

I'm glad I popped in here today. I've never heard the whole story till now.

At 9:55 AM, Blogger Mrs. Diamond said...

Your story moves me.
I pray for continued health and blessing for your daughter, and continued closeness for you both

At 6:25 PM, Blogger Nettie said...

Thank you for letting us hear that...

At 2:18 PM, Blogger Barbara said...

I had not realised that her diagnosis was so recent..

I pray that she continues to thrive and that you all draw even closer together as a family - even though you may be facing a time of physical separation - your hearts will always be molded together..

Blessings to you all

At 8:48 PM, Blogger Paula said...

Wanted you to know I stopped by for a visit. You're in my thoughts this weekend. Hope all is well.

Love ya!

At 9:02 PM, Blogger Shawnda said...

It's neat to hear how TP's diagnosis came about and to just hear your heart through it. My heart is very heavy right now as we await a Dr's appt tomorrow to see an ultrasound see if our baby has down syndrome or cystic fibrosis.....or is healthy. Obviously we are praying for a MIRACLE and that the Lord would HEAL her body in the womb right now if there is anything wrong at all!!!! you heart is so heavy and weary in the waiting. I would so appreciate your prayers!!!!!


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