Trusting More

This morning started out with a supernatural calm over our home. Paul left town for an all-day business trip and when I woke up I felt like our home was wrapped in a blanket of security. I found Kathryn in her room getting her medications. When I looked in on her I immediately noticed her left eye was drooping. She complained of a terrible headache behind her left eye. I examined her head and found a large mushy place on the crown of her head. It all seems like a dream now. We knew that the doctor would probably want to see her so we left a message for the nurse and started getting ready for the the day. A few hours later Kathryn was in the doctors' office being examined. The two doctors who saw her agreed that she was having an extra-cranial bleed. The blood was pooling between her scalp and skull. She was given a new prescription for Stimate (to clot her blood) and took the first dose this evening. She has had other internal bleeds in her spine but this is the first time a bleed has involved her head.

Kathryn is strictly forbidden to do anything that would raise her blood pressure or cause her to spring another leak. So she will not be lifting much or exerting herself for a few days. The "calm" is still settled over our home tonight. I believe that there is a strong voice in the Heavenlies saying, "Peace be still!" And the troubled waters obey.

Jesus got up and rebuked the wind and the raging waters; the storm subsided, and all was calm. "Where is your faith?" he asked his disciples. In fear and amazement they asked one another, "Who is this? He commands even the winds and the water, and they obey him." Luke 8:25

Summer Bloom

With the arrival of Autumn, I have been sorting through Qavah's clothing and pulling out the sizes she has outgrown. To my amazement, her feet have grown two shoe sizes this summer and the winter pants left from last year are too short to be worn this season. Annelise now shows up at our house wearing Qavah's smaller sized clothes. It is remarkable how much children grow in the summertime. With rest, good food, exercise, and sunshine, they stand taller in the fall and look older somehow. The joy in all of that growth comes from recognizing that cells are dividing as they should, and that bones are growing normally. While I might be tempted to feel sad about Qavah growing up so fast, I am actually quite thankful for her development.

We have had so many good days all together that my heart is full of thanksgiving. I haven't known a time in my life like this before. But as I woke Qavah this morning, I asked her how we could celebrate today. She said, "We could shop at Wal-Mart and get French fries!" So that is what we did. And we were still celebrating tonight as we tucked Qavah in for the night in her new size 5 pajamas from Wal-Mart. God is good.

A Date

This past weekend was packed full of work, errands, babysitting, etc. Paul passed me in the kitchen on his way upstairs and I asked for a kiss. "Something is missing in our relationship," I pouted." "Yeah, like romance?" he asked. Bingo. This week we are planning a date.

Paperwork

While Qavah received her transfusion yesterday, I sat beside her filling out paperwork for the NIH. The questions were probing and most of them could not be answered. I breezed through ten pages because I have no birth-family history on Qavah. Someday, birth parents may be required to fill out forms that give an adoptive family some medical history. That would certainly help if the child begins to show signs of an inherited illness. We are focused on that dilemma only because we are now in a position to answer questions that could help lead scientists to a cure for Qavah.

Yesterday unfolded just as I had imagined. We all arrived home to a wonderful hot meal and during our table conversation I heard good words. "Qavah was brave." "I finished my homework." "I met an interesting person at work today." Good food, laughter, and encouraging words, all made for a lovely dinner. That was topped off with dessert later with Colin and Jennifer. (Happy Birthday, Jennifer!).

This afternoon I am ready to mail off the packet to NIH. Our two years of research has opened doors to the NIH and to Johns Hopkins. We have filled out stacks of paperwork, located all hospital records, and have prepared Qavah emotionally for the research. Now we wait. And now we trust that the One Who knows the number of hairs on her head is at work.

I agree with Job 42:1 "I know that you can do all things; no plan of yours can be thwarted."

Meat Loaf

Our family is having a busy day today. Although it is early in the day, I have given some thought to dinner. Qavah and I will be at the hospital for her transfusion this afternoon. Paul Burton will be studying at home but will be able to pick Kathryn up from work. My husband will come home after work as hungry as a bear. We'll all arrive home about the same time and everyone will be thinking about a meal. I've settled on serving meatloaf for dinner.

Once the meat, oats, ground carrot, and onion were mixed together with egg and milk, I started thinking about how it feels to arrive home to the fragrance of a hot meal. It warms the heart. I may be as Old-Fashioned as the oats I put into my meat loaf, but I love having my family walk into the house after a long day, sniff the air, and say, "It sure smells good in here."

It's more than the meatloaf, buttered red potatoes, and green beans that I look forward to enjoying. It's the conversation around the dinner table as we catch up on the day. Our meal starts with a prayer asking God to bless the food and thanking Him for His goodness. It continues with enjoying the food, exchange of the days' news, and appreciation of each other. There are many good reasons why families can not sit down to the dinner table together these days, but it sure adds some healing goodness to the end of the day.

It's early and I don't yet know what challenges or delights this day will bring, but Lord willing, it will come to a close with meatloaf and smiles all around.

His Story

While gathering together all the necessary documents to send to Johns Hopkins, I read the very first medical report written about Qavah. I read it greedily; scouring the pages for detail. She had a history before she became "ours." The physician noted, "baby born with no cry." That statement followed a long list of serious health problems, some of which she still exhibits six years later. In reading the history my heart responded with tender emotion to the beginning of God's story about Qavah.

Our common bond in this life is not just that we are all human, but that His Story is being written and we are all a part of it. His Story isn't complete without the chapter He is writing about you. And as you flip back through the pages to the beginning of your life, I hope you see His Story as a great love story. I hope you'll find, that He thought you worthy then, and has not stopped thinking about you since.

Yesterday, while out shopping, Kathryn and I met three women who knew about us through reading our blogs. They introduced themselves and shared their interesting histories. They were in the midst of working through a variety of challenges themselves. Those women inspired us and we prayed for them when we got home. Life is a series of joys and challenges, and in them God is revealing Himself and writing His Story. Kathryn and I commented to the women that it will take eternity to hear all of the redemption stories He has written. I have chosen to believe that the Author of The Book Of Life has published a work of fact not fiction. The end of His Story is a victorious one, where death is defeated and the battles won. That's an ending that makes the whole book worth reading.

"In the beginning God created the heavens and the earth." His Story is written in the Holy Bible and continues with you and me. And the very last verse is spoken as a blessing over all of our lives, "The Grace of our Lord Jesus Christ be with you all. Amen."

Genesis 1:1 ... Revelation 22:21

Something to Do

When God gives me something to do, I feel His pleasure when I get started. We have been given a great opportunity to help Qavah through Johns Hopkins Kimmel Cancer Center. They sent me a "to do" list. I am to provide them with all the background information to help the doctors get a better idea of Qavah's condition before they see her. I used some of my time yesterday having my car inspected and oil changed in preparation for the driving ahead of me. I spent some time this morning collecting hospital records and preparing to send the packet of information out by the end of this week. And in the "doing" of these simple tasks I have this marvelous hope that God has given me that Qavah is going to be healed.

She on the other hand has no concerns about these tasks that must be done. She just goes along keeping me company. She played with the toys at the car dealership like it was a special treat while my car was being serviced. At home she had a little bowl of popcorn and watched a movie while I sorted through her medical records and made some calls. At bedtime I have been telling her a story about a little cell named "Killer" (PacMan) that goes about devouring little dots (or red blood cells) and he must be stopped. To anyone on the outside it may look like we are just moving through the hours in our day. But in my heart I know I am following the path God laid out for me and I'm learning to never, never, never, give up.

As I go about accomplishing these tasks, I am imagining Him doing all the necessary things behind the scenes, undetected by me, to show me His glory and grace. Never far from my thoughts is the moment when we are told that a treatment plan is working. I pray for that day with all my heart.

Belonging

I woke up yesterday morning and opened my eyes to see Qavah standing beside my bed staring at me. I had to get more sleep. I asked if she could come up on my bed and sit for awhile so that I could get a little more sleep. She climbed up on the bed, put her head down beside me, and started playing with my hair. I fell asleep with her holding my hand and woke up an hour later with Qavah still staring at me. I said, "Qavah, you were as quiet as a little mouse." She replied, "And you snored like Daddy."

What a funny little picture; my little daughter lying there as quiet as a mouse, while I sawed some serious logs. I asked her later what she was thinking about all that time. She told me she was thinking about wanting to look like me. I knew what she meant. She's beginning to notice that the color of our skin is different. But when we got dressed we both wore brown slacks with red blouses. That thrilled her. Kathryn saw us dressed alike and reminded me that she went through that stage of wanting to wear matching clothes as well. Now that she is an adult I asked her why she had wanted to dress just like me. She said, "It's more than the clothes. It's going places and having other people see that we belonged together." And in her answer was the importance of giving orphaned and abandoned children a family. It gives them a place to belong.

Surprise Answer

Last night I was lying beside Kathryn praying. I asked God several times throughout the night for some sort of sign that would help us know what was going on with her. Paul Burton checked Kathryn in the middle of the night and suggested the swelling in her arm and face was her body's way of fighting an infection of some kind. He thought her doctor should start checking for a sinus infection or something along those lines. So that was what I had planned to do this morning. It is nice to have a nurse living close by!

By morning I had to help Kathryn brush her teeth and when she opened her mouth I saw the problem. It was thrush. It was there as plain as can be. I looked up the symptoms of thrush and they matched what I was seeing. After a trip to the hospital for labs and a couple of prescriptions later, she now has what she needs to address this problem. Thrush is a common side effect of methotrexate and a compromised immune system. Her labs today still showed elevated liver enzymes but the numbers were coming down from where they were two weeks ago. I think the Great Physician was smiling when I started brushing Kathryn's teeth this morning. I did ask Him for a sign. If she had been able to brush her own teeth, would I have seen it?

Call unto me and I will answer thee, and show thee great and mighty things, which thou knowest not.
Jeremiah 33:3

Thursday Night

Kathryn is not doing well tonight. Paul got her hot tub filled and we have soaked her hoping to relieve some swelling in her body. A co-worker noticed today that one side of her face was swelling. Now her right arm is swelling. She said she feels poisoned and is bringing up bile. Her last liver function test showed elevated levels and we were to have her rechecked next Monday. But I will take her to the hospital tomorrow for those labs to see if her blood work will reveal anything. She suspects her pancreas is involved somehow and therefore she is limiting her diet to soft foods and liquids. Her pain is manageable without pain medications and we pray it will stay that way.

I had a call from Qavah's geneticist today that was very encouraging. Qavah will most likely get an appointment to see a top hematologist at Johns Hopkins. He has made the study of bone marrow failure the focus of his career and we are very fortunate to have his interest. The geneticist took my phone number and email address and told me that I will be hearing from Johns Hopkins shortly. Every time the phone rang today I felt hope rising. One of those calls will be the one I'm waiting for.

Mom and Dad Campbell drove down from Fishersville to visit today for Mom's harp lesson. We ate dinner together while Kathryn slept upstairs. I missed her at dinner because she absolutely loves sitting around a table with family.

Tonight as we settle in, I feel the strength that God gives me when life is pressing in and there is no where else to look but up. Over the past three years I have seen God's goodness and find it easier now to trust Him for this new battle with Kathryn. Tonight when I was lowering Kathryn into her tub she said, "Mama, I want God to give you and Daddy something so special for helping me." He already has given us that in the form of hearing gratitude from someone who has every right to be mean and cranky.

The Week Begins

After a weekend of catching up on household duties, I spent the better part of today on the telephone. I arranged my talk time with Aimee (Maddie's Mommy) and Qavah's doctor around her movie watching time. I don't think "grown-up" talk about bone marrow biopsies and research is good for her. So while she watched Chitty Chitty Bang Bang for the tenth time, I was on the phone. She isn't able to express to me why she loves that movie so much, but she asked me to sing a bedtime song from that movie called Hush-a-Bye Mountain last night. I did my best with Edelweiss from the Sound of Music instead.

I've been in touch with Aimee about trying to get our little girls to Johns Hopkins at the same time, since genetically they have a common chomosome deletion. Qavah's geneticist here in Roaonke will be receiving Maddie's records hopefully by the end of the week. The geneticist will set up the appointment at Johns Hopkins. Aimee and I would be so thrilled to go to that appointment together with our girls. We are praying that it will happen all in God's perfect time. Please pray that they will be able to get an "Angel" flight from Phoenix to Roanoke or Baltimore in order to make the appointment.

Aimee and I have such a strong driving desire to get help for our girls. Our goal is to find a drug that will put this blood disorder to rest so that Maddie and Qavah will be able to live a normal life. This is a high calling for a couple of mommies. It is a good thing to have the Most High God hearing our prayers for a break through.

Working Vacation

We are celebrating Labor Day by laboring over our "to do" list. The girls are both having some very good days. Therefore, now is the time to get things done around the house. This past week I painted the walls and trim of our dining room and finished a couple more projects that have been waiting for me for three years. Yesterday we all spent the day working around the house. Paul Burton helped most of the day so we were able to accomplish quite a bit.

When we got home from church today we sat down in an improved dining room. The color is called Hydrangea Floweret; Kathryn's favorite flower. It's refreshing and we all like it. We work well together and are thankful for the joy of accomplishing tasks as a family. But greater still is the joy of holding hands around the table, acknowledging God's goodness, and thanking Him for all He has done for us. Right in the middle of a working weekend is the Sabbath Day, when we are called to rest. And that is just what we plan to do today.

Transfusion Day

We arrived at the hospital early! The best thing about early morning transfusions is watching the good programing on TV with Qavah. There are plenty of teaching programs to help us pass the time since a transfusion takes three hours. Qavah settled in with a blanket from the warming machine, a strawberry nutritional shake, and was good to go. It was nice to be in Elmo's World for an hour with my daughter. Today's show was all about pretending. What would life be like without pretending?

Why is it that pretending is one of the greatest things we remember about being a child? When I was little I watched Roy Rogers and Dale Evans on Saturday morning TV then spent the rest of the day playing cowboys and Indians with my brothers. Being good at pretending isn't just for kids. Pretending to be brave helps us to step out in faith when our hearts are about to faint. I still like to pretend, but now I consider it a serious skill and I'm glad I had Elmo to remind me of it this morning.

Sleep Study

Paul was stung by a hornet on the side of his face on Saturday. By Sunday night his eye was just about swollen shut. He was busy in the barn looking for a piece of wood and didn't notice that the hornets in the nest above his head were in an uproar because of his presence. When he went to the doctor today his blood pressure was higher than it had ever been. Paul thought it was because of the hornet venom or the fact that he had just been told he has to go to a sleep study tomorrow night.

One of the things I like about being married is having a bed buddy. Not the little rice bag things that are warmed in a microwave to keep me warm, but a real live husband. The bedtime stories, the warmth on a cold night, even the snoring, is part of our story. But the doctor told Paul that he is going to have to spend the night in a room similar to a hospital room in order to be hooked up to machines and monitors. His snoring is a sign that he is not getting good sleep, and that his oxygen levels may be low during the night. Tomorrow night my bed buddy will be taking a sleep study miles away and I will toss and turn wondering how he is doing and if I locked all the doors. I'll miss his snoring.

That's marriage. You just learn over the years how to be bookends. And the story in between those bookends can be so sweet. Sleep well, friends.

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

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."

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.

Eva Dawn Hollious Campbell

Earlier last week, Annelise told Colin and Jennifer that her sister with dark hair was going to be born. The morning she was born I told Annelise that she had arrived and she took it very matter-of-fact, as though she had no doubt. The interesting part of this story is that Colin and Jennifer did not know the sex of this baby due to the position Eva was in when an ultra sound was taken several months ago. Even more curious is that Eva's soft baby hair is dark. Do children have a hot-line to heaven?

Thank you for your good wishes and your congratulations. We are so grateful. It has been a time of real celebration around here. God is good.

Sabbath Day Surprise

Many of you know we have been awaiting the arrival of a new baby and that is just what we got this morning. The baby was born on the Sabbath Day! Jennifer and baby are doing well and sleeping peacefully in their own bed since it was a home birth. We will not be the first to reveal whether the baby is a boy or girl, or give a name until Colin and Jennifer make their announcement to the world. But we are happy to report that Kathryn and Qavah are feeling well and able to enjoy this new little family member.

God is good and has smiled upon us yet again. We are blessed.

Scrap Wood

Qavah is outgrowing her toddler bed. Therefore, Paul and I have spent the past two evenings making her a bigger bed. My practical mind thought through the fact that in these economic hard times we might be able to use scrap wood and make something interesting rather than purchasing a bed. We already had a twin bed mattress.

I had the idea to use a crude bed we had made four years ago and kept on our upper porch. It was made of fence posts. Then I took a trip to a local craft store and found some little two-inch wooden balls to screw into the top of the posts. Her bed is made of scrap wood from the barn, eleven wooden balls, and is painted white with leftover paint from another project. In a day or two, Qavah will have a new bed. But even more important than that, she will have a bed big enough for us to sit beside her and read bedtime stories. I'll post pictures when the bed is in place. I love dreaming, scrap wood, and a handy husband.

In the middle of the project I had a feeling that Jesus "The Carpenter" was looking over our shoulders. I think it pleases Him when we are creative. Or maybe I felt His pleasure because He also likes to make something beautiful of broken things.

Free Entertainment

We've had another good day. Kathryn and Paul left for work early this morning and since the day was dark, gloomy, and rainy, I went back to bed to wait for Qavah to wake up. She woke up an hour later brimming with joy. She was all smiles and snuggles. I got her bath and started getting her dressed but rather than getting with my program, she was holding her orange slacks out in front of her while hippity-hopping around. I waited for her for awhile then finally asked, "Qavah, what are you doing?" She stopped and said, "I'm dancing with my pants before I put them on!" What would the world be like if we all woke up so happy we danced with our clothes before we put them on? I'm just wondering.

Weekend Weather

The cool temperatures we have been experiencing in the south are very rare for this time of year. We have the doors and windows open tonight and the breeze is ushering in the fragrance of honeysuckle which is in full bloom. The cool temperatures and low humidity have made everything clearer, including the view of the Blue Ridge Mountains, and my memories of the weekend. Qavah was the perfect birthday princess, and Kathryn felt very good physically. We were able to hear our first born son as he preached a powerful sermon at his church today. He spoke of the steadfast love of our God. My heart said, "Yes!" and "Amen" to the words fitly spoken. My heart is full tonight as I reflect on the goodness of God.

In these good times, we have the opportunity set before us to gather strength, courage, and rest, for the times to come. This is a season of celebration for us and I am enjoying it so much. It actually makes me wish that the weekend would not have to come to an end.

Awesome is God from His sanctuary; the God of Israel, for He is the One Who gives power and strength to His people. Psalm 68:35

An Historical Day

Paul likes to shop for glue. My husband has a whole drawer full of glue in the garage. There is wood glue, glass glue, instant glue, epoxy, and a whole variety of other glues. They claim to bond pieces back together better than new. But over the years I have not found "glued" items to be reliable. I started to wonder about the validity of claims written on the glue bottles and tubes when after being glued, certain items fell apart again. But as soon as Paul sees something break he will say, "Give it to me; I've got a glue that will fix it." Which has caused some pretty funny things to happen in our years of marriage. Let me just say we no longer try to glue handles back on coffee mugs.

Tonight when Paul was in the heat of battle with Qavah using our little boat oars as swords, one of them snapped in two. As the battle came to a screeching halt I said, "No, Paul!" Without even asking me what I could possibly mean he grinned and said, "Glue won't fix this; they're too old and brittle." Yes, as the title of this post states, this is an historical day.

Another Fun Day

Qavah has been counting down the days to her birthday. We celebrated a little early with an outing today. I took Qavah and Annelise to Chick-Fil-A and let them play on the big indoor play tunnels after they had eaten their lunch. They had such a great time. I've watched them at home spontaneously put their arms around each other saying, "You're my friend," or "I love you," but today they were able to do that in a public setting. The sweetness of those moments did not go unnoticed as people around us asked me how they are related. The employee that helped me carry our tray to the table whispered, "I hope they will never lose the love they have for each other." Their friendship speaks of acceptance and is a testimony to the way children reach out to one another. This was a precious memory-making day.

Kathryn just walked in the door after meeting a friend and shopping at the mall. I asked where she had eaten dinner and she said, "Chick-Fil-A!" I laughed and told her about our day. I guess Chick-Fil-A was the place to be on this lovely summer day.

What is in the News

I started reading the daily news online this evening and after about five minutes I thought, "I may go out of my mind doing this!" So I began to wonder if there is a news network out there that reports the good things. Surely someone had a prodigal child return home today. There must have been some doctor somewhere who saved a life today. I'm sure that a baby somewhere spoke its first word, or took its first steps. I hope that news reporters will take a good look at what is right and celebrate that before their reports of all the wrong pull us all into a pit. There, I've said it and can put my soap box away.

I enjoyed being home most of the day. It was a beautifully clear summer day. Qavah and I watched The Prince and the Pauper. She also had her blood drawn and was given an appointment for a transfusion. The Red Cross has always come through for Qavah. The life-giving blood she needs is always waiting for her at the hospital and after a transfusion she is ready to jump up and play. She is doing very well and is outgrowing many of her little dresses. She is getting taller and doesn't mind shopping for new ones.

Kathryn is feeling strong and doing very well. I happened to think at some point today that when things are going so well I honestly forget that we are dealing with HPS. We keep adding new projects to our list and keep going as long as her strength holds out. These times of wellness are pure joy. This may not seem like spectacular news, but I feel God's pleasure as I report it.

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8

Saturday Night Date

We devoted the weekend to family. Paul set up the little swimming pool for Qavah, Nehemiah, and Annelise. We sat outdoors watching the children splash and squeal. We watched Wiggles, read stories, and changed diapers. By this afternoon Paul and I were passing each other in the kitchen and he asked, "How about a date tonight; just you and me?" That sounded great so after dinner and baths we packed up the grandchildren to return them to their Mommy and Daddy and then headed out.

We discussed our possibilities including visiting the Salem Fair. But we ended up buying the bargain tea from a local fast food place, filled the car with gas, and finished out the evening with a trip to Lowes and Walmart. We may not win a prize for thinking up the most romantic dates, but we ordered only one large iced tea and asked for two straws. It's love.

Oh My

On my way home from running several errands I stopped at the Country Store for some homegrown vegetables yesterday. As I was shucking corn Qavah asked me where we were going next. I told her in a very quiet voice that we were going right home because I needed to use the bathroom. She replied in a very loud voice, "Well, don't pee pee in your panties Mommy!" Oh my! I looked up quickly to see who was around and it was just as I feared. There were snickers and giggles coming from all around. But someone did look me in the eye to say, "She's adorable!"

More Joy for Qavah

* Our comment system is now fixed!*

Qavah has a brand new reason to smile. She just got a new hairdo. We went to the JC Penney Salon and had her hair straightened. I am now able to run a comb through her hair which is something she hasn't experienced before. When I comb her hair she relaxes into it with happy sighs. Today I rolled the car window down while moving in traffic and I heard a sudden burst of laughter from Qavah. I looked into the rear view mirror and discovered the reason. She had her eyes closed and said, "I can feel the wind blowing my hair, Mommy!" I could tell by her expression that she was enjoying the feeling. She has also been running to and fro. I asked her why and she said, "Because I can feel my hair bounce when I run!" It's the little things, right girls?

The before picture:

The relaxer is at work and Qavah has dreams of long flowing hair.


The hairdresser had this whole process finished within an hour and Qavah was very patient.


Qavah has been smiling like Miss America with her new "do" and has thanked me at least a dozen times for taking her to Penney's.

This Fine Day

We took the family up to visit Granddaddy and Grandmom in Fishersville to celebrate the Fourth of July. Our seven passenger van was stuffed with diaper bags and baby gear. The little children got to hear the happy music that their uncles started playing. And at one point they all just started dancing. Their little faces were so happy as they listened to the music and bobbed up and down to the rhythm. We had the traditional American cuisine for lunch which included hot dogs, baked beans, and coleslaw.

It is a special day for us when we can be together enjoying holidays. There is something comforting about belonging to a family that prays when we meet together, and a family that pulls out musical instruments to play music that sets toes to tapping. We were blessed to have a heaping helping of the freedoms that are our in America.

Uploading Scripture for Days Like This

As I wrote yesterday's post I debated about whether to quote scripture in detail, but decided that I had written enough to get the point across. However, today as I reflect on a particular verse I want to record it. "And the Lord blessed the latter end of Job's life more than his beginning." (Job 42:12) I recall reading it many years ago and thinking, "Well, that's a happy ending!" But lately I've been asking myself, "What would Job say was the greatest blessing?"

Job had celebrated his early life with a house full of happy children but they were swept away in a day. All his property was taken or destroyed. His health and friendships were stripped from him. And as he spoke to God about the meaning of it all, he came to terms with the fact that God is God. He acknowledged the authority of God over his circumstances. And in the later chapters of Job, God and Job were speaking to each other. There was a friendship. There was dialogue. There was a reverence and a respect that was mutual.

I wonder if the blessing in the latter part of Job's life was not that his wealth and family were restored, but that Job knew his God. He knew his Creator stayed with him through all of his trials. Job said to the Lord, "I know that you can do anything and no one can stop you. You ask who it is who has foolishly denied your providence. It is I." (Job 42:1-3). I want that kind of dialogue with God. I want to honestly kneel before Him and accept the plan He has for me.

This morning Paul Burton came to the back door clutching his chest. He came in, sat down at the table and said, "Mom, call an ambulance." His color was white and hands were blue. He was cold to the touch. He was taken to the emergency room and by the end of the day was diagnosed with esophageal spasm. It feels very much like a heart attack, but it was not. As I waited for the ambulance to arrive I stood over Paul Burton in the kitchen praying, "Lord, whatever you have planned for this day, give us grace." I was talking to the Lord just like Job had done. I found myself able to talk to the Lord as though I could see Him sitting at the table across from Paul Burton. This is how God is blessing the latter part of my life; I have accepted His Presence, providence, and gift of peace.

We are grateful tonight that the "attack" Paul Burton experienced was not serious. But several years ago he told me that if he were to die, he knew with certainty that he would be going to Heaven. He believes that Jesus was sent to the earth for the remission of the sin that separated him from God. He has received the free gift of forgiveness and grace by Christ's death on the cross, so that even in death we know we will be together again to celebrate the peace of Heaven and the joys that await for all those who believe. What better way for children to bless the latter part of their parents' lives than to tell them, "If anything happens to me, you will know that I am with God."

I would like to thank our friends and family who knew of the situation and prayed for Paul Burton today. He is resting comfortably tonight.

Upgrades

Our family is in the midst of upgrading computer systems and software, therefore I haven't been on the computer for a few days. Kathryn has managed most of the upgrades for us. She has been transfering files and downloading software while Paul and I have been creating new office space and taking care of other things around the house.

In this time of reprieve from the girls' physical trials, I'm upgrading my home. I have cleaned closets, washed windows, made window treatments, and attended to unfinished projects that I started over two years ago. My "to do" list has several things crossed off of it after this past weekend. And as I was attending to all the things that have had to wait, I was considering how much fun it is to do the simplest things. I have enjoyed every moment I've had to create and remodel. It's my way of celebrating the "normal" days. A completed project gives me something tangible to look at as a remembrance that there are days of rest from our trials. I love observing the girls when they are having good days, and that was certainly true this past weekend. Their smiles and contentment are also a reminder that God is strong and able to do exceeding beyond what we ask.

Finally, I just started a new Bible study and feel as though my very soul is being upgraded. I'm "uploading" scripture for my heart to ponder, and "filing" new data into my heart for the days to come. I believe there are going to be times ahead of us that will require more of us; more faith, more patience, and more perseverance. And I'd like to head into those times with a clean house, a working computer, and a heart full of courage.

The Days are Just Packed

As with Calvin and Hobbs, the days are just packed with adventures around here. We've had parties, house guests, projects, and more. The days that Kathryn feels good are increasing. Qavah is also doing well. So this is the time for celebrations and getting things accomplished. It has been fun for Qavah to have Nehemiah and Annelise visit this week as well. All the children like to spend time on the swings and when naptime rolls around they all fall asleep very quickly.

Today I have been researching and calling hospitals around the Country looking for more information about bone marrow transplants. I am getting packets of Qavah's records ready to send out to Seattle, New York, and Minnesota, in the hopes that someone will take an interest in Qavah's case. St. Jude's turned us down because Qavah's condition is so unlike the blood disorders and cancers they normally see. However, they did give us some leads on other transplant facilities.

We have been praying about a bone marrow transplant which is something some of her doctors wanted us to think about from the beginning. That is a huge step, and one that requires faith. We know that God has a wonderful plan for Qavah. Now we are looking for every possible means to give her the best medical help. Please join us in praying for the doors to open if a bone marrow transplant will indeed put her disease at rest. We also pray that if that time comes we will all have the faith to walk through those doors.

Weekend Celebration

The girls have both been feeling well. That is cause for celebration right there! But we are also celebrating Father's Day, my birthday, and Nehemiah's birthday all in one weekend. The sweetness of celebrating these events with the family has made for a joyful weekend.

After dinner last night there were birthday presents to open. I opened one gift to find I had a pedicure and manicure scheduled first thing this morning. Then I opened a gift certificate for one of my favorite antique stores so Paul and I went "antiquing" this afternoon. After an evening walk with my friend Linda I am settling in for the night feeling very blessed. This has been a very special day from beginning to end. I am now another year older. I find that with age comes wisdom and I wouldn't want to give up all I have learned by turning the clock backwards. So this year I plan to view wrinkles and graying hair with more acceptance. I plan to laugh more.

One night last week I emptied out my blue jean pockets before getting ready for bed. I had several dollar bills stuffed in one pocket; change from the grocery store that I had forgotten to put into my purse. So I left the money there until morning. The next morning while showering I heard Qavah fly into the bathroom shouting, "Look Mommy! Look what the tooth fairy left on your dresser!" She was holding a fistful of dollars in awe of what she thought the tooth fairy left for me. While contemplating the acceptance of gray hair and wrinkles I sincerely hope that I will keep my teeth for as long as I need them.

New Research

For the past eleven weeks, particularly the week after a transfusion, Qavah has battled lung congestion. Paul Burton has showed me how to hold Qavah and pat her back in the area of her lungs to help her cough up some of the congestion. She has been on two different antibiotics but neither have cleared the congestion. We have been praying fervently for the right help for Qavah and recently believe the Lord has led us to broaden our research on Qavah's health problems.

In our attempt to find help we have come across websites for orphan diseases and rare chomosome diseases. I wrote several emails asking for help from the contact persons and received some information today that could potentially help. I have also found some websites devoted to helping parents cope with the challenges and sorrows of watching their children struggle with a rare disease. All of this information is out there for me on the internet. It is a huge gift to have access to these things. I have drafted a simple email and have listed all of Qavah's chronic symptoms. It is ready to go out to whoever is out there waiting to help someone like Qavah. It only takes one person with the right connections. Please join us in praying for the one.

The Best Intentions

Kathryn has had another good day and used her energy wisely. She is going to take tomorrow off work because her company will be having an outdoor picnic. That is probably one of her least favorite things to do in all the world. The bug bites, the bees she can hear and not see, the hot sun on her fair skin, all have led her on more than one occasion to say, "I'm going into the house; this is too much nature for me!"

Qavah had a special guest join her at the hospital for the fun of it. Her friend Emily thought it would be a good idea to come to the hospital sometime to hold Qavah's hand and help her to be brave during her transfusion. Today was the day that worked out for all of us. So Emily positioned herself beside Qavah, the nurse got everything ready, and as soon as Emily saw the blood she was outta there! She went into the next room and her Grammy went after her. Emily declared it was a little too much for her. But the sweetness of God is that He has given Qavah a bravery beyond her years to cope with the frequency of being "stuck" with a needle. And He has given her a dear little friend who loves her with the best intentions.

All is Well

Kathryn enjoyed a full day of work and is feeling even better than yesterday. Qavah played with Nehemiah and Annelise this afternoon and I was able to do a lot of laundry. Paul is enjoying Sweden very much. Hearing the sound of his voice via cell phone was better than a morning cup of coffee. Tomorrow Qavah will have a transfusion in the afternoon. While Paul is away taking care of business life goes on. I like it best when life goes on with clean laundry. God has blessed our day.

Back to Work

After a weekend of sleep, Kathryn woke up this morning and got herself ready for work. She just called at 11:15 AM to say that she still has energy and plans to work until the afternoon. Over the weekend, as recovering from the current set back seemed painstakingly slow, we talked about the strength that comes from setting goals and being hopeful even when things don't look promising. By faith she laid out an outfit for work last night. When God has a work for us to do, He supplies our energy and everything else we need to get the job done. We recognize that Kathryn is on her feet today and back to work because the Lord has ordained it. She is happy to keep on the path He has set for her. I am humming the following hymn as I think about Kathryn busy at work today.

“Fear not, I am with thee; O be not dismayed!
For I am thy God, and will still give thee aid;
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand.

Reaching Home Plate

As I sat down to write tonight I had a mental picture of a baseball game in which a player had rounded the corner from third base racing like the wind toward "home" to score a home run. Maybe growing up in Michigan watching the Detroit Tigers play ball still influences my thoughts at times. But sliding into home plate is how I feel tonight as the sun is setting and the Sabbath Day begins. Our family played a tough game this week, but it ended in victory. You and I were made for worship and fellowship with God and He gave us this day to enjoy Him and to celebrate the victories. It is right and good to acknowledge that the work of the week is done. Rest well.

Jesus I am resting, resting in the Joy of what thou art;
I am finding out the greatness of thy loving heart.
Thou hast bid me gaze upon Thee and Thy beauty fills my soul.
For by Thy transforming power Thou hast made me whole.
~ From the hymn Jesus I am Resting, Resting

Medical Update - Kathryn

I'm going to post a quick update here while Qavah is having her lunch. I plan to take the phone off the hook and sleep along with the girls this afternoon. I took Kathryn to the hospital for another dose of Salumedrol this morning. She is stronger today and I see it in little ways. For instance, I got her dressed and put a little make up on her but today she passed the mirror and looked at herself. That's progress. When I pointed that out to Kathryn she said, "Yeah, I'm such a girl." Humor is another good sign.

While Kathryn has long periods of time when she is unresponsive I miss her. We have so many conversations rich in theology and doctrine. There are times that we share verses with each other that touch our hearts deeply. Sometimes when I don't know how to help Kathryn I feel like I am stumbling around in the darkness looking for some little glimmer of light. I found this verse last night and it taught me about having faith in the dark times. I'll close with a word from God.

Who among you fears the Lord and obeys the voice of his servant? Let him who walks in darkness and has no light trust in the name of the Lord, and rely on his God.
Isaiah 50:10

Hurdles are made to be Jumped

Kathryn's condition deteriorated during the morning and I took her to the hospital around 1 o'clock. Paul came home from work to help me get her dressed and into the car. It has been a long, tiring day. The problem with diarrhea, a common problem with HPS patients, is that all medications pass through the body without providing the necessary relief of symptoms. While I usually write about Kathryn's "GI issues," I am actually referring to profound diarrhea that leads to bowel bleeding and blood loss. She was not able to stand up or walk on her own today and again I was thanking God for a friend of mine who made it possible to buy a lightweight wheel chair two years ago for times like this.

By the time we arrived at the hospital Kathryn could not answer simple questions and her eyes wouldn't focus. After the nurses consulted Kathryn's doctor it was decided that she should have an adrenal boost by way of a Salumedrol infusion. She was taken to a dark, quiet room and given the medication by IV, then received her Remicade treatment. After several hours, Kathryn perked up a bit and we decided to come home and continue medications at home throughout the night. If her body doesn't adjust on one treatment of Salumedrol we have an open appointment to take her back to the hospital tomorrow.

We are thankful for what this lesson has taught us. In the future we will be asking her primary care doctor to order drugs in the event that we can not reach the specialist when a presciption runs out. Paul is due to leave for Sweden on Monday. I'm thankful that all this is taking place while he has been at home to help. Kathryn has stated confidently that she will be going back to work by Monday. I am joining her in that belief. Kathryn will jump this hurdle by God's grace. She is confident in His power.

Sudden Changes

I just finished reading my last post. Qavah, who seemed so exhausted, went for her blood transfusion on Tuesday and after arriving at the hospital the nurse said, "Qavah doesn't need a transfusion today because her CBC is 10!" I could hardly believe my ears. I'm sure I must have looked stunned because I was speechless for a few moments. I asked the nurse how that could be possible and after discussing it she stated, "Maybe this is the miracle you have been praying for." Qavah's transfusions have been every two weeks. By that time her CBC is between 8-9. This time, because of her rashes and reaction to the last transfusion, we waited an extra week to have her transfused. So she should have been past due for a transfusion; instead she was healthy enough to leave the hospital without it. I have firmly believed that we are going to see a miracle where Qavah is concerned. We continue to pray for it and wait.

Kathryn on the other hand had been doing very well. However one of her doctors was unavailable to write her perscriptions for two of the medications that keep her body stable. She was without them for four days and suddenly yesterday her health took a sharp downward spriral. She is bleeding externally from several places and her body is covered in new bruises. She is unable to work. I will be taking her to her Remicade treatment today and the nurse will be able to document her condition. The pain and GI problems are back with a vengence. If only to see how much relief she is getting from her current meds, this has been a valuable learning experience.

Kathryn was up most of the night with electrolyte problems so I stayed with her. In spite of the demands of her body, and getting up to help her so often, we still had a great time talking about the mighty power of God in the middle of the night. There are some truths from scripture that have come alive for us on this HPS journey. In particular the idea that casting our cares upon Him keeps us free from walking around as though we are shouldering a great burden ourselves. As unbelievable as it seems, there is a lot of joy in this journey. Enjoying a close, continual walk with God and feeling His steady hand of comfort is beyond anything either of us can describe to others.

Quick Update

Qavah is going to the hospital in the morning for her transfusion. She seems tired and I think that has to do with the antibiotics she is taking and many weeks of having a stuffy nose. I have been searching the internet for more clues as to what may be going on with her immune system. I wish I could understand medical language.

Kathryn is doing well. I was able to do quite a bit of sewing for her tonight. She went to bed happy with all the new clothing she now has to choose from that is altered to fit her just right. I think part of the joy Kathryn has in working is preparing her outfits and coordinating jewelry the night before. She's all girl and I love it.