Transfusion Time

Qavah woke up Sunday morning and crawled up on my lap. I rocked her wrapped in her blanket and she said, "I want to go get some blood from Dr. Meck." I am amazed by the way she is beginning to understand her own body. Today her labs showed a need for a transfusion so she was given her Red Cross arm band and a ten o'clock appointment to get a transfusion in the morning. Her CBC was 6.5 today.

We have had a sudden opportunity to take Qavah to a hematologist in another state. The appointment was made through a friend of mine, and it all transpired in such a remarkable way that we are all in awe. She will see one of the best hematologists in the world next month. I can only shake my head with wonder and thank God that He hears and answers prayer. I am not going to give names and location just yet, but our every need has been met before we even set out on our journey. This upcoming appointment is a gift from the Lord. There is no other way to explain how things fell into place. Our prayer is that God will inspire him to do something for Qavah.

The Genius of God

Kathryn and I have had an interesting weekend. I took her to her Alumni weekend at Mary Baldwin College. The event featured Dr. Francis Collins, famous for his scientific discoveries and mapping DNA. We had already met him two years ago in Washington DC, but this weekend we were able to talk awhile with him. Paul Burton also took his viola to a musical gathering at The Oaks, where the Collins family treasures fill an 1840's southern mansion. Paul Burton was able to play along with the Collins brothers while Kathryn wandered around the mansion taking pictures.

The Collins' home schooled their children including their son Francis, and taught them music and drama. Their contribution to Mary Baldwin College is significant. Saturday afternoon we listened to a lecture on how science is "proving" the theory of evolution. Scientists say they now know that the DNA of chimpanzees is so closely related to human DNA, that there was once a connection until a mutated gene caused the evolution of man. There were many affirmative responses in the audience. It sounds reasonable. But Kathryn and I grinned, knowing our God works outside the realm of reason and science, and He has no theories. He created DNA, and He knows not only what it is and how it works, but why it is the way it is.

While listening to the presentation I recalled the later chapters in Job where God spoke to prideful Job and said, "Were you there when I formed the earth, Job? Were you there when I set boundaries for the waters of the oceans?" After a confrontation with God, and experiencing His great power and wisdom, Job humbled himself before the Lord and repented of his pride.

Kathryn and I don't consider ourselves very learned. Neither of us understand math except to balance our check books. But we do have faith. We came home and read Genesis 1:7 which states," The Lord God formed the man from the dust of the earth and breathed into his nostrils the breath of life, and the man became a living being." Won't it be fun to get to Heaven and find out the "rest of the story" from the One Who made us? And when He is telling it, I'm sure Kathryn will not be wandering around the mansion taking pictures.

HGTV

I admit to being influenced by television. I have seen those shows on HGTV that "make-over" an entire apartment in two days. I've observed their formula for getting things done. Sorting, organizing, and changing the decor, achieves the desired results. We are doing that with the apartment on our property and it will soon be transformed. I guess I like make-overs because I feel like they are a reflection of real life.

How many times have we approached a problem differently than we would have ten years ago? How many times have we been surprised by how we handle a situation with more patience and thoughtfulness as we have gotten older? An Unseen Hand has been carving away immaturity with so much tenderness and mercy that the transformation might be missed. Then life's pressures tests us, and we discover we have changed. That has occured in my life through the transforming power of the Holy Spirit, and the wisdom that comes from knowing God. Like the apartment, I'm being transformed.

Many of the things we have done in the apartment reflect a transformation in Paul Burton as well. When he first moved into the apartment he was just beginning college, and his apartment was a hang-out for playing video games, and hosting youth group activities. Back then it didn't matter to him if a broomstick was used as a sword and went through the ceiling. The holes have been patched and painted. This afternoon, I went through the little cedar chest in the apartment and sorted all the favorite stuffed animals that have been kept all of these years. I found Pound Puppies, Lamb Chop, and The Cat in the Hat. The memories swooped in like a flock of Chickadees. They were cheerful, light, and fleeting, as I sorted quickly in order to stay on task. The stuffed animals belonged to children who dragged them around the house long ago, and those days are gone. I put away a few stuffed toys for the next generation. Qavah snatched up Curious George, and the rest are headed to the Goodwill Thrift Store. Paul Burton is parting with his 30-shot Nerf machine gun, and has made room for his expresso maker instead.

Through the transforming power of God, when we are called upon to change, grow, and mature, the end result is like that of the apartment; less clutter, more clarity, and a fresh way of looking at things.

Thank You For Those Prayers!

I watch Kathryn leave for work in the morning and I can hardly believe my eyes. She looks beautiful and is getting stronger all the time. I credit that to faith and answered prayers. I have longed for these days. Almost every evening Kathryn gets home with exciting news about her day, and is able to eat what I fix for dinner. Even on the days she takes Methotrexate, she is able to work through the nausea. Your faith, your prayers, and our Great God brought us to this place.

I am trying so hard not to be overwhelmed with frustration over Qavah's condition lately. We have seen how God worked in medical challenges with Kathryn, and it should keep me in perfect peace! Yet I find myself searching the internet looking for research, testing, diagnosis, and therapies, that could possibly shed some light on Qavah's medical problems. She has been out of breath and has had very low energy the past two days yet she is still two weeks away from her next transfusion. I am asking, seeking, and knocking on doors. I'm like the woman in the Bible looking for her lost coin. We finally received a report by mail today detailing what the specialist at UVA had to say. In that meeting we agreed that she needs a bone marrow biopsy and genetic testing again, since it has been almost five years since that was done and her condition has remained unchanged. But these rare diseases are challenging for doctors because they don't know how to begin treating the symptoms. I hope I am praying big enough when I ask God to pour out His wisdom on Qavah's doctors. I have a feeling we have not yet met the doctor that will be the instrument of blessing to Qavah. But my eyes are searching the horizon for the one the Lord will supply.

Normal and Loving It

Before I left the house for my power walk last night, I laid out my long dress and jewelry because upon my return I had just enough time to get ready for my date. Last night was opening night for the new season with the Roanoke Symphony. I quickly dressed, noticed Paul dressed in a dashing suit and tie, and we swiftly headed out of the house blowing kisses to the girls. I turned around and looked at Kathryn and joyfully shouted, "NORMAL!" She grinned at me and said, "Don't hurry home, everything will be fine." It has been a long time since we have been able to enjoy an evening out like that. We smiled and held hands. The music was beautiful and flowed through the auditorium like a balmy breeze. I love these normal times. I am enjoying them fully. We stopped on the way home to shop in our symphony clothes and that was fun as well. I found a little bouquet of flowers for Kathryn's room to thank her for babysitting, and all too soon the evening was over. I woke up this morning feeling so blessed. These are the times of refreshing!

The Weekend

The girls have had a very good weekend so far. It is amazing to see Kathryn doing things she used to do and enjoying herself. On Friday she went shopping with a friend and to a movie. Tonight she went to the Civic Center to hear a concert with Colin and Jennifer. And tomorrow she is planning to go to her Sunday Bible study. It is miraculous to us. Just to see her having so many good days in a row is rare, and so wonderful.

While Kathryn is on her feet and having fun, Paul and I are trying to get some projects finished before winter. The garage hasn't been cleaned in two years, and we have had to let a lot of household things go in order to take care of the girls and their needs. Now that we have this window of opportunity we hardly know where to start, but it is giving us a great appreciation for the good days of health we used to take for granted.

We're looking forward to a restful Sabbath Day. The weather here in Virginia is perfect in the daytime and the temperature at night could not be better for a deep restful sleep without the sound of the air conditioner or furnace turning on. I love the One Who gives me these simple pleasures. Enjoy your day.

Do Other People Dream Like This?

I was washing dishes after dinner tonight thinking about the invitation that arrived in today's mail. The paper was thick and beautiful with the state seal of Louisiana stamped in gold. The invitation is to our family, to attend the tenth annual Adoption Reception Celebration at the Governor's Mansion. I thought about what it would be like to tell Bobby Jindal what a great job he is doing with the state of Louisiana, and how thankful we are to the state workers who connected us to Qavah. While I dream that the event would be wonderful to attend, the reality is that a two-day drive with the girls' unpredictable health wouldn't be wise.

Continuing my thoughts on invitations, I accepted an invitation years ago to consider asking Christ to be my Savior. By faith, I took it. I asked Jesus to be my Savior, and repented of the sins I knowingly committed that kept me from having a relationship with God. Certainly having accepted the invitation to spend eternity in Heaven will always be the highlight of my life. As grand as it may be, an invitation to the Governor's Mansion just isn't the same. In Heaven, as I talk to Jesus and see Him face to face, I can ask, "Wasn't that amazing when Qavah, who had never met us before, wrapped her arms around our neck and said, "Come on Daddy and Mommy, let's go home!" I can imagine Him beaming with joy for all of us. I can talk to Him about the day we first held all of our children and I'll want to tell Him how much fun it was to watch their personalities emerge. He is the only One Who can say, "Yes! I was there for every change!" He can agree with me that dimpled fingers of toddlers are replaced by knuckles so quietly that one day we look at our children and wonder when the dimples disappeared!

The dishes are done now, my daydreaming is over, and after this post I'll turn out the light in the kitchen. I wonder if other women think these thoughts while doing dishes. It certainly adds interest to an otherwise routine job.

Changing Seasons

Having once lived in Michigan, the thing I like most about Virginia is the long season of warm weather. The warmth starts thawing our bones in late March. Then it isn't until mid-October that a chill returns in the evening air. The wind tonight smells like the crisp northern air of Michigan that I remember so well from high school football games. It's baked apple season, and time to pull out the sweaters. As the seasons change, I know we are going to have many opportunities to see God's goodness on cold winter days. But I'm holding out for a few more warm days to walk barefoot in the grass.

The Lessons of Job

We attended church with Colin and Jennifer this morning. The morning message came from the very last verses of Job. The Pastor had been preaching from the book of Job for awhile, and today was the conclusion of that study. Of interest to me was how the Lord used those last few verses to speak to Job's friends; the friends who came to give Job their interpretation of what God was doing in his life. After Job suffered with every heartache known to man including the loss of his family, fortune, and a head-to-toe case of boils, the Lord took the last few moments of the whole story to speak to Job's friends.

So often the things we suffer are not exclusively to teach us. The lessons are often used to teach others observing our lives. The Lord concluded His message to Job's friends by basically telling them that while they found fault with Job and tried to reason with him with their limited wisdom, it was Job who understood that He was God. He reminded them that He alone had the answers to the tough questions. He praised Job for trusting Him during the darkest days. Job humbled himself before God almighty and said, "I have heard about you with my ear, but now mine eye hath seen thee." Job 42:4

I'm sure many who suffer from rare diseases and those with no cure can relate to Job's suffering. We just read the news that another young woman has died from the complications of HPS. She had just turned twenty-six the day before she died. My heart goes out to all of those who are waiting and hoping for a cure as they see their friends' lives come to an abrupt end at such a young age. Before Kathryn's diagnosis we did not even know this syndrome existed. It not only exists but it is ruthless. We would be untruthful if we did not admit that along with that news we quietly wonder how much more time we will have together here on this earth. I asked God to comfort those in the HPS community who mourn another death. I've asked Him to draw near to those with this diagnosis as they wonder how many days, weeks, or years, they have left. There are no easy answers like the one's Job's friends offered, and for which they were rebuked and told to repent. May God's love be very real to those who mourn tonight.

Considering the Facts

We are considering the facts as they appear for Qavah. Her health care providers have been pushing a diagnosis of Diamond Blankfan Anemia. However not all of her lab results are consistent with that diagnosis. Where we are having a challenge is finding a group of doctors willing to look at her symptoms for more clues. We don't believe the diagnosis of Diamond Blackfan Anemia is correct.

We are in the very same place we were with Kathryn eighteen months ago. If lab results don't support a theory, medicines that could bring healing are withheld. We ask that those of you who want to make this a matter of prayer would pray for a doctor who will consider all we have learned about Qavah and use a drug to suppress her immune system. This is not something that is unheard of by any means. It could very well stop the destruction of her red cells. We just haven't found the right doctor willing to travel this road with us. Kathryn's care changed dramatically with the use of Methotrexate. But we saw eight doctors and tried everything else before someone was willing to try that drug.

Wednesday morning Qavah came downstairs from her bedroom after a good night's sleep. She laid down on the kitchen floor near where I was working and couldn't get up. She looked like a little colt struggling to get her feet under her. I picked her up, dressed her, and took her for labs. I discovered that after just four weeks her CPC was 6. We stayed at the hospital for an immediate transfusion and she is doing better, but her last three transfusions have been necessary at four weeks. That's a lot of transfusions and we are asking everyone to pray that this cycle will be broken somehow. We know God has a plan for Qavah. She asks Paul to pray for her before she goes to sleep at night and lately she has been asking, "Can you pray that Jesus will make me better?" Her faith is being exercised even at her young age and limited knowledge of what He really can do. Watching Kathryn come back to life my prayer is, "Would you do it again for Qavah, Lord?"