Meet Maddie

Meet darling little Madison. "Maddie" is two years old and lives in the Phoenix area. Maddie is one of three known children in the world with a deletion on Chromosome 3q29. When I first found Maddie, her parents had a slide show of her in various stages of her life on their website. The pictures of Maddie as in infant in the hospital really tugged at my heart. She has many of the same physical problems we see in Qavah. Last week our families definitely caught the attention of a group of scientists at NIH studying bone marrow failure. We are asking God for a miracle for Maddie, Qavah, and Jamie. All three have been kept alive through transfusions every three weeks since birth.

Since speaking with Aimee, Maddie's Mom, my determination has been renewed. Aimee is also a Christian. I told her that we have a great group of prayer warriors following this blog. We are asking God for a miracle break-through that would enable our children to lead their lives free from their dependency on blood transfusions. We are believing that there is a drug on the market that will bring them into remission, and we pray it will be tried in God's time.

This blog has been a real tool in bringing together people of God who pray with a sincere heart. Sometimes when I am out in public, people stop me to tell me that they read the blog and are praying for us. I have told Aimee of the many times our friends and family have prayed us through the most difficult times and how it has encouraged us. Now Aimee can know that even when faced with the most difficult decisions, the people visiting the Campbell blog are praying. Aimee and her husband Darrel have their hands full with their four children, but they are loving Maddie well. I now pray that they will be uplifted by the strength that only God can give.

Father thank you for the readers of this blog who boldly ask for miracles. You have given us a glimpse of your glory through answered prayer and we humbly thank you. Jesus healed a woman with an "issue of blood" therefore we can believe that healing for Qavah, Maddie, and Jamie is possible. Amen

The Days to Come

We have been having some serious talks around our home about the upcoming flu season. Qavah and Kathryn may not be able to tolerate the flu vaccine and yet they are very vulnerable to viral and bacterial infections. In our last visit to the pediatrician's office, we went over some common sense things that would help keep the girls healthy this winter. We agreed that we can avoid crowds during the peak flu season, and stay home.

We decided to do something with the four walls, if we are going to be staying home looking at them. With some help from our friends who own and operate The French Thistle on Williamson Road, we have updated the master bedroom into a refreshing retreat that we can all enjoy this winter. Paul said he can see it all now: he will be sitting on the loveseat reading Jane Austen aloud while the three of us girls are snuggled together on the bed under the covers.

I chose red and gold as the color theme and Paul added his touch with two homemade night stands that I painted and decorated to match the Country French decor. He also made a foot bench for resting our feet upon when we are seated on the loveseat in the corner.

The loveseat was given to us by some dear friends who felt that it would not fit with spaces in their new home when they moved out West. We had it reupholstered at The French Thistle and were very pleased with the detail and craftsmanship. The piping on the loveseat was a very pretty little check pattern that complemented our gold and red fabric selection.

When we picked up the loveseat at The French Thistle we were able to get a picture of the owners David, Lizi, and son Kurt, who mastered the re-upholstery job. The little throw pillows were a perfect touch.

Pictured below is the loveseat in its new home. This is our space to worship, pray, read, and recharge our batteries.

How does the woman in Proverbs 31:25 laugh at the days to come when she knows they are going to be difficult on many levels? I suspect she had a lovely corner in her home in which to fix her eyes on things above where our true treasure is waiting for us; our heavenly home where our sanctuary will never be shaken by strife or hardship.

Porches

A front porch is a happy place for us. A southern front porch with a glass of iced tea in the summertime seems like the subject of a Norman Rockwell painting. Paul and I worked steadily over the last two months on making Colin and Jennifer a swing for their front porch in celebration of Eva's birth. As Paul was sawing, sanding, and bolting it together, I kept thinking about how much Colin and Jennifer might delight in a quiet place to sit with their busy family at the end of the day. The night we delivered it, Paul and I sat on it together with Annelise and Nehemiah. They were wide-eyed as they watched the flicker of candlelight and listened to the night sounds. We made a mosquito netting enclosure to protect them from the biting insects.

Paul and I have a favorite spot on our upper porch where we sit late at night with a cup of coffee to finish out the day. Sometimes we silently watch the moon and stars. Other times we talk while watching the fireflies lighting up in the woods. Although we don't have close neighbors to be bothered by our conversation, we tend to speak softly as though the time together is sacred; like being in a church. If you haven't had time to sit on the porch lately, tonight might be the right time. Enjoy.

Intertwined By Design

A number of people have entered our lives in the past three years who have blessed us, prayed with us, hurt with us, and pulled for us. And every time I stop and think about that, I am grateful for that kind of love and support. That encouragement keeps us forging ahead. This past week I have spent nearly six hours on the phone with the mother of another child with a 3q29 deletion. At first our conversation was merely an exchange of information, then it was an exchange of doctors' phone numbers, and suddenly our lives are intertwined on a very exciting road. Our doctors are calling each other and comparing notes.

Our genetics doctor here in Roanoke has gone above and beyond her duty this week to connect us to two blood study groups, one at Johns Hopkins and the other at The National Institutes of Health. Qavah's records and new labs will be sent to those facilities next week. Since the other child has so many similar symptoms to Qavah's, her blood will be studied and compared to Qavah's under the careful supervision of the researchers. As parents we have our eye on the goal, which is to help our children survive. Our research into a bone marrow transplant led us to this path. The cancer centers I had sent Qavah's records to felt that she was not healthy enough to survive a transplant. She would need to be in better physical condition first, but without any treatment plan, she would not likely get healthier. But in researching from that angle, I found the other children with this disease, and new doors have opened.

I am going to ask permission of the parents of the other two children to allow me to identify them and post a picture of them here on this blog. These little children are so sweet and yet struggle so much. As their iron counts gradually creep higher, placing a strain on their internal organs, we have to keep hoping and praying for a miracle. I know in my heart that all of these events of the past week are leading somewhere. And again I am asking God as Moses did, "Lord, show me your glory!"

Exodus 33: ¹⁷ And the LORD said to Moses, "I will do the very thing you have asked, because I am pleased with you and I know you by name."

¹⁸ Then Moses said, "Now show me your glory."

¹⁹ And the LORD said, "I will cause all my goodness to pass in front of you, and I will proclaim my name, the LORD, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion.

Father, let your compassion fall like rain upon the lives of these children and show us your glory. Amen

Stormy Weather

The forecast for every day this week has been the same. It seems we are stuck in a hot, muggy, stormy, weather pattern. I've been ready to say good-bye to the summer heat and humidity for awhile. On Monday, when I saw the week-long forecast calling for more of the same, I sighed. But here it is, almost Friday, and we are one week closer to the glorious cooler weather and colors of autumn. And it happened just one stormy day at a time. Rain or shine, I'll leave you with a quote from Abraham Lincoln. "The best thing about the future is that it comes only one day at a time."

The Quest Continues

Paul and I left Qavah at home with Paul Burton this afternoon while we went to see her doctor to discuss Qavah's health. Paul Burton took Qavah out for hamburgers and they had some fun. Paul and I took all of our research with us including the information we found on the two other children with a deletion on the third chromosome. Qavah's doctor was interested in what we found but the hour-long discussion ended with us agreeing to stay in touch if we found anyone in the world researching rare blood disorders. Specifically we are looking for someone interested in studying these three children and possibly using a drug therapy to bring the disease into remission.

The problem remains that the impact of helping just three children is not enough for most scientists and doctors to want to use their research dollars for this particular problem. While we wait for God's plan to unfold, we have a job to do. According to God's word, our job is to love Qavah and teach her His ways. That's an easy task since she is such a grateful little soul. Although our conversation with the doctor left many things up in the air, Qavah's time with Paul Burton made her spirit soar. While this problem is stretching our faith we do not have one second of regret. We are enjoying the journey.

Quest for Qavah

After we received the results of Qavah's genetic testing last spring, we were told that there were two other children in the world with a deletion on chromosome 3q29. In a fleeting thought I wondered if it was possible to find them. After months of research and joining a support group for people with chromosome disorders, I have found them. One lives in England and is a cute little boy. The other is a two-year-old girl living in Phoenix. I've been in communication with both parents and the similarities in our children is remarkable. I don't think it is just a coincidence that we have found each other. It was wonderful to speak with someone else about the challenges Qavah faces both now and in the future. Another thing we have in common is that we are all praying for a miracle.

This coming week we are going to meet with Qavah's doctor who has been out of the office for two months on maternity leave. This is the chance we have to share this new information with her. I hope in the near future that the doctors of all three children will put their heads together and try a treatment plan. All three are transfusion dependent and have an overload of iron in their bodies. So far, we have turned down steroid therapy, which annoyed our hematologist. But Paul and I are convinced that Qavah would not do well on steroids. I was able to discover that the other two children were put on steroids, didn't respond, and have suffered some side effects as a result.

We continue to pray for wisdom to meet the needs of both of our girls. And added to the mix of their physical needs is the need to feel normal and to enjoy normal activities. We are thankful for every good day we have, and thank God regularly for supplying us with little times of delight.

Bits of News

I have seen Qavah playing doctor many times. She even checks veins on the arms of friends to see how visible they are for blood work. And as I observe her doing that, I wonder how many children with health challenges grow up to be health care providers. As we sat in the doctor's office today waiting for Qavah's transfusion we met a young man who was there for his very last visit to the pediatric clinic. He had cancer at the age of five and was now eighteen and headed off to college. As he was telling me that story I looked at his mama who was glowing with pride. I know there was a day that she wondered if he would live to go to college. And to finish off the story his mother said joyfully, "He's going into medicine." Qavah's name was called and we parted with good wishes but I can't help thinking tonight how much that young man already knows about caring for sick through his own experience.

Although one of Kathryn's doctor visits today was not very encouraging, she is planning to watch a movie with me tonight and forget about it. Qavah is planning to join us and wants popcorn. Paul is entertaining a few men from China this week as they are doing business with the company. He is playing tour guide and taking them to restaurants for lunch and dinner. And what do foreign visitors want when they come to the USA? Today they wanted hamburgers and purchased one hundred dollars worth of chocolate kisses and candy bars to take home to their loved ones. That about wraps it up for our little bit of news tonight.

Today Ballet

After a big weekend, and visits with more cousins and family, Qavah just wanted to stay at home today. I looked into her room early this morning and she was already wearing ballet shoes and trying to pull on her tutu. I asked what she had in mind and she said, "I just want to stay home today with my ballet suit and watch Angelina Ballerina." So that is what we did. Qavah is seeing the doctor tomorrow about some GI problems and needs another transfusion this week. She has so little control over her circumstances that staying home today to watch movies in a ballet outfit seemed like a great idea.

Kathryn is back to work and feeling much better after tummy troubles and going back to eating baby food. She is probably ready to take a day to be a ballerina princess herself, but she has joined the work force and has to wait for the weekend to play princess.

Senior Moments

I had a friend, now in heaven, who used to say she was having a "senior moment" whenever she began a story and lost her train of thought. She would start to name someone in her story, forget the name, and start knocking on her head as though that would rouse the little memory cells for the answer. She would say, "When my senior moment passes I'll tell you the name, because I know it like I know my own."

Well, today I took Qavah to the Mill Mountain Zoo. We met up with friends and when the girls jumped on the back of a tiger sculpture I started saying, "There was a young lady of Niger, who smiled as she rode on a tiger..." The rest of the poem was hidden from me. My memory had failed me and I couldn't finish it! I was having a senior moment. I thought about it on the way home trying to remember the words but they just didn't rhyme well. The evasive little poem nagged at me on and off the rest of the afternoon until Paul walked in the door.

Can you imagine what Paul did when I flung open the back door and shouted, "Quick, finish this poem before I go crazy." "There was a young lady of Niger, who smiled as she rode on a Tiger!" He blurted out, "They returned from the ride with the lady inside, and the smile on the face of the Tiger." Which just proves at the end of the day that we need each other!

Value

We value our food by keeping it in a refrigerator. We value our cars by keeping them running with gas and oil. We value our jobs by showing up for work on time. What value is placed on human beings these days? According to the new health care package being pushed rapidly through Congress, newly formed government health management teams will have the right to decide on medical treatment for those individuals who have terminal diseases, advanced cancer, or age. To those who think the government can manage health care, think of how they have managed social security or unemployment benefits. Under the dozen or so statements I read taken from the thousand-page document in the hands of congress, people like Qavah and Kathryn will be at the mercy of a government agency. Their drugs and treatments are not conventional because of the rarity of their diseases. What then will the government decide to do with them?

Please make your concerns about the proposed health care plan known to your congressmen and senators. In recent years, one senator voted to allow doctors the "right" to leave a baby unattended to die if it was born alive during an abortion attempt. There was very little public outcry over that senator's vote. That senator is now President Obama. There is a voting record available online for anyone to view for themselves if it is too unbelievable. If he could vote to make it legal to walk away from a newborn baby in distress, what value will the Commander in Chief or Congress place on our lives if we become a "burden."

"This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live and that you may love the LORD your God, listen to his voice, and hold fast to him." Deuteronomy 30:19-20

This is a serious issue, and we would do well to pray. http://www.youtube.com/watch?v=SD_YOlUBoIk

Quieted Heart

Linda and I took an evening walk in our quiet neighborhood. As the sun was setting there were bright, beautiful, cloud formations rising high about the mountain range. There are times during our walks that I have applauded during the sunset. God has given us some beautiful sunsets this summer and I think He deserves a standing ovation for the end of the day display. Linda enjoys my enthusiasm over such things and recently had me listen to a gospel group she discovered singing the song, "How Do You Like The Show." I'd say tonight's show was mighty fine!

The darkness is settling now and after two weeks of company and overnights with the grandchildren our home is very very quiet tonight. My heart is also quieted. The past few days of good family times around the table with dessert and coffee and the celebration of two birthdays have closed out the week with joy. (Happy birthday Mom and Danae). We are very thankful for the good health of our girls that made it possible to have the family reunion at our home this year. It was like "old times" as I scurried around the kitchen. Qavah enjoyed the attention of her cousins to the utmost.

I'll close tonight by posting some pictures of Qavah's "scrap wood" bed. She has had her bath and is ready to climb in. At the end of a long week or even a long day, doesn't it feel good to slip your feet into your own bed? The sheets have a certain softness and the pillow is just right. Rest well, friends.