Bacteria Overload

Kathryn saw the GI doctor this morning. He agreed with the diagnosis of an overgrowth of bacteria in Kathryn's body and was pleased that the IV Rocephin had started already. Her appointment was very informative and productive. She will be detoxing in some not-so-pleasant ways over the next two days. Basically the doctor told her that she should be feeling a lot better in about four days and gave her some pro-biotics to use during the course of the Rocephin treatments which will end on Sunday.

Qavah was telling Kathryn's Home-Health nurse today about the people she loves. As she was telling about each family member, the nurse kept commenting on her sweet spirit. I "catch" her joy when Qavah talks about the wonderful things in her life. I found myself smiling brightly. Paul Burton stopped off at the store late last night and bought her a couple of movies. She jumped for joy this morning when she woke up and discovered she had "Nemo!" for her very own. As Qavah told the nurse all about Paul Burton and how he "buyed me Nemo at Wal-Mart," she made us all smile. Lord, if I am going to have an abundance of anything, let it be gratitude and joy!

Seasons

Just like the weather fluctuation in springtime, the seasons of good health for Kathryn change unexpectedly. Since last week she has been having trouble with bleeding again but it seemed under control with the Stimate we were using. However in the past couple of days something has changed. Kathryn's health took a drastic turn last night after posting a very courageous stand for life on her website. Her post was very direct and strong, but within a few hours we were at her bedside praying for help, watching her body weaken.

The places on Kathryn's body that look the worst are places where she has had surgeries. Her wounds have been healed for over a year and yet this morning the site of her old Hickman line was inflamed and bruised looking. Paul took her to the doctor. Her blood counts were changed from her last visit and with the continued bowel bleeding the doctor started her on IV antibiotics in his office because her symptoms and tests seem to indicate infection. He didn't want to wait to start an antibiotic until the bacteria cultures came back because the Hickman scar had long red lines forming around it. The stress to Kathryn's adrenal system has caused other problems all day. She has been shaking with joint pain and vomiting since early this afternoon, so we have had to give her a larger dose of Prednisone. The doctor gave her a choice to stay at the hospital or go home with Home-Health Care to receive IV's at home and she decided on the latter. So we are home, but Kathryn is struggling to keep her spirits up because of this abrupt change. She is scheduled for a visit with her GI doctor early Wednesday morning.

Our hope is strong tonight. Our wrestling is not with the physical problems of HPS but the spiritual battle raging against Kathryn as she continues to choose life and boldly proclaims the truth of God's word concerning the sanctity of life. Paul and I sat with her for awhile this evening and read portions of the book of Isaiah aloud. The events surrounding her graduation and the stand she has taken against a culture of death reminds us that Kathryn has chosen a narrower road, and with it comes suffering at times.

"Listen to me, my people, listen, for I will see that right prevails. My mercy and justice are coming soon; your salvation is on the way. I will rule the nations; they shall wait for me and long for me to come. The time will come when the redeemed will all come home again, they shall come with singing to Jerusalem, filled with joy and everlasting gladness; sorrow and mourning will all disappear." Is 51:4,5,11

Time

One Month to Live: Thirty Days to a No-Regrets Life, that's the name of the new best seller on Amazon. It must be a topic that many people are pondering judging by the number of book sales. After Kathryn's diagnosis and first hospitalization, Paul and I had some heart-to-heart talks about how we were living our lives. I was making plans for an empty nest and had just taken Kathryn on a tour of colleges to look at graduate programs. Paul was working fourteen hour days and Saturdays. We barely had time to celebrate being a family. As a result of facing the seriousness of Kathryn's condition we set about to make some changes. We are taking time to celebrate life. Several times lately when we have been out with the girls, listening to them giggling in the back seat, Paul has taken my hand or I have taken his and one of us will say, "no regrets." We haven't read the book, but I think we could have written it. Time is precious. Decisions we make about investing our time are better.

Paul is in the process of selling his business and has taken a job to free him up on evenings and weekends, and life on the merry-go-round as we knew it has come to a stop. Paul has commented on how much fun it is to just be home in the evening. We had forgotten how nice it was when the kids were small to sit on the porch with a cup of coffee to watch them play. Tonight I watched from the window while Kathryn and Qavah were playing on the swings in the yard as the sun was setting. Life is now moments like these.

Kathryn has made a decision not to attend her graduation ceremony in May. There are several reasons for that and I will leave it to her to elaborate on her blog. But I was thinking about the times we have sat through long speeches looking at our watches wondering, " How much longer will this last?" Kathryn has no desire to take a day out of her life to sit through another speech. Her life is now made up of moments. I woke up and heard the gentle strum of her harp at three o'clock this morning and smiled, knowing she was simply enjoying the moments she was awake in the middle of the night.

Many friends and family have asked, "How are you going to celebrate Kathryn's graduation?" We talked about that with Kathryn and she came to the conclusion that it would bless her the most if friends sent their good wishes by mail and stayed home to make memories with their own families. A graduation is a marker of progress. We are so proud of Kathryn for setting a goal to finish college and not give up on her dreams. But we are most proud of the way she lives her life with intention. She is the tool that God has used in our lives to carve away our busy-ness and replace it with moments of joy. God bless you, Kathryn, and may our lives together be filled with "no regrets."

A Little Perspective

Qavah received a camera for Christmas. It is a digital camera made for children. We thought it would be fun to have her take pictures of things that interested her. Then by viewing her pictures we thought we could learn about her interests and help develop them. We taught her how to aim the camera and then how to snap the picture. Since giving her that camera we have had some deep belly laughs. Keeping in mind that she is only a little over three feet tall, this is the world from her perspective.

Copying the phrases that make her smile for pictures she said, "smile everybody. Say cheese, say monkeys, say gweesy sneakers."

Today Qavah came skipping out of Kathryn's room with her camera. "I got pictures of Kafrin's harp!" she exclaimed. Sure enough, there is Kathryn's harp, or the strings anyway!

Both girls are having some minor health issues. Kathryn had another bleeding episode in her back but we had Stimate in the refrigerator and gave it to her immediately to stop the bleeding. She is in pain now when she moves, but this has happened before and we knew what to do right away. Qavah has another staph infection and it is causing a painful sty to her left eye. She is fatigued by it and has been taking extra long afternoon naps. Her next transfusion will need to be soon. We had ten very good days all in a row, and nothing can take that away from us! My gratitude for those ten days can not be shaken. While Paul and I have cared for the girls during their bad days, we have certainly learned to celebrate the normal days with more enthusiasm. It's all a matter of perspective.

Back to "Real" Life

Last week was wonderful. Every day was an adventure. This week is wonderful, too, but responsibilities are staring me right in the face. Taking a week off left us with nine loads of laundry, dust balls forming in the hallway, and weeds spreading like wildfire in the flower beds. But a week off is exactly what we needed. We called Marcia today and found out that her day back at the office was filled with responsibilities too. Well, taking a week off was what we all needed and if any other friends want to come and visit, we'll take another week to have some fun. The guest room is available.

Kathryn has her harp in her room now. At night when we are all settling in we can hear her playing it softly and we find it is the most soothing music in which to fall asleep. Mom and Dad surprised her by bringing the harp to her on Saturday. It is such a beautiful thing. Dad has been talking about the next one he plans to make. It is very exciting to hear an instrument that is hand-made by special grandparents.

An event that passed by rather quietly last week was Paul Burton's birthday. We once went to a marriage seminar where Paul and I learned about the typical habits of people born in a certain birth order. The speaker had great insight regarding the first born and baby of the family. I was hoping to hear about the "middle child" being one myself, but when the guest speaker got to the description of the "middle child," he said, "Middle children are used to being overlooked, so we'll just skip right over them!" Everyone laughed but the "middle children." So here is my tribute to Paul Burton, our "middle child," who helped us care for Kathryn with his medical knowledge over the past year and delights us with his joyful spirit and heart of mercy. Happy Birthday, son.

Noon Flight for Marcia

We took Marcia to the airport at noon and by three o'clock she called from Detroit saying she was already on I-94 south of the airport on her way to shop with her husband at Cabella's (the hunting and fishing superstore). Except for taking Qavah to UVA on Wednesday for diagnostic testing, I was able to take off my "nurse's hat" for the week and enjoy the time with my friend.

In just a week Marcia helped Kathryn practice her voice lessons, taught Qavah a new song, and fit all kinds of sightseeing activities into her schedule. Everyday was special. We took long walks each day and enjoyed an abundance of sunshine. We laughed, cried, and prayed together. We saw the beauty of the valley in full bloom. And last night she was here to celebrate Passover with us. It was a full and glorious week. It has been so long since I've had that kind of week. I told Kathryn tonight that it all seems like a dream. With Kathryn having had seven good days in a row I am in awe of the mercies of God.

The weather was so pleasant the day Marcia arrived that we ate dinner outside:

Paul Burton, Marcia, and Dawn hiked at Roaring Run:



After the hike, Paul Burton and the ladies ate at White Oak Tea Tavern:


Marcia got to visit with Dad and Mom Campbell the day Qavah went to UVA:


Marcia got to play Grandmom Campbell's harp:


One day, the girls went antique shopping at Olde Salem Mercantile. Qavah turned into "Tootsie the Butterfly":


Qavah and Aunt Marcia:


Marcia celebrated Passover with us on Friday night:


The only souvenir Marcia took home with her was three bottles of Virginia-made salad dressing that we bought just before dropping her off at the airport:

The View From My Window

The girls are doing so well. Kathryn stayed home yesterday and slept through the day as her medications were working. She woke up feeling much better today. Qavah had a very good appointment in Charlottesville and bravely did all that was asked of her. I was able to see on the ultra sound that her one kidney is very large for a child her age, which means that her body has compensated beautifully and her one kidney grew to do the job of two kidneys. We have a lot to be thankful for. Marcia was such a big help to me this week and Qavah has been saying, "I love Aunt Marcia," in response. The drive to Charlottesville was shorter with a friend to go along.

When I wake up and look out the window at the end of our bed, this is the view I see every spring. I feel the joy of waking up to a brand new day when this sight is waiting for me. When I opened my eyes this morning I said "Lord, you are really showing off today!" This spring has been one of the most beautiful because the rain had fallen just before the blossoms burst open. The sunshine and temperatures are just right to encourage the blooms. Is spring more beautiful or have I grown to appreciate life more?

If you put your mouse cursor directly on the picture and click, it will magnify the picture and show you a little bit more of the greatness of God's handiwork.

Acting like a Tourist

Today Paul Burton, Marcia, and I hiked up the falls at Roaring Run. It was a spectacular hike. We hiked higher up the falls than I have ever been. The early spring colors are very vivid and we were the only ones in the park to be hiking today. It was absolutely breathtaking so we broke into singing the Doxology as we walked along. "Praise God from Whom all blessings flow" fit with the sound of rushing water perfectly. We topped off our hike by stopping by the White Oak Tea Tavern for a late lunch. We had worked up an appetite and the Hot Spinach Artichoke Chicken Salad with Lemon-Mango Tea is what I would recommend! It was delicious. I have never been to the Tea Tavern so I am enjoying our community the way a tourist would. It has been so much fun. I feel like I am waking up every day to "play" tourist, and I sure am enjoying my vacation!

Tomorrow I will be leaving in the morning with Marcia and Qavah to drive to Charlottesville for Qavah's big appointment with the University of Virginia Pediatric Clinic. She has just one kidney. By finding out how her kidney functions there may be a clue as to what is happening in her body. She will be having more lab tests and an ultra sound so we have prayed for her bravery. When our appointment is over I will show Marcia around the university area and then we will visit with Aunt Jacquelyn and Heather in the Charlottesville area. All of us girls prayed together before heading off to bed tonight. We had many things to be thankful for in this day, and we requested safety for our trip. Lord willing, and in His strength, we will have another adventure tomorrow.

Happy Girls

Kathryn, Qavah, Aunt Marcia, and I have been doing nothing but playing, telling stories, staying up late, and enjoying Roanoke together. Aunt Marcia came for a visit arriving from Michigan on Saturday and will be staying for the week. We have been praying for good health for both girls and God has been very gracious to give us three good days in a row.

I like having guests. It gives me the opportunity to step back and see our little city through someone else's eyes. We went to Greene Memorial church on Sunday afternoon to hear a Russian choral group singing Russian Orthodox hymns and folk songs. It was very impressive, and I was so happy to be able to show that to Marcia who calls herself a "farm girl." She especially likes the southern accents. Just today at the fabric store a woman came to the check out after having made two other purchases. She exclaimed to the cashier, "Y'all are gunna have ta kick me outta yer stower." We went out giggling but not in a disrespectful way. It just "got us tickled" as they say in the south.

Paul stayed home with Kathryn and Qavah to give me some time to shop with Marcia tonight. When I got home Paul was upstairs mopping up in the bathroom. I asked what happened and he said, "Qavah got a little enthusiastic about her splashing tonight." Gee, I wonder why that kind of thing doesn't happen when I give her a bath. How is it that a Daddy can bring out the "enthusiasm" in our little ones just before bedtime?

Weekend Fun

The girls are both doing so well physically that we were able to attend a church service last night and have several fun things planned for the rest of the weekend. Tonight, at the local library we will celebrate the thirtieth birthday of the Blue Ridge Library. But the main reason we want to go is to hear the Hall String Trio. They are a young family we met years ago that have studied music and have made it a big part of their homeschool training. They now play for weddings and other events. I'll give you a link to listen to them. They are a very sweet family and I'm very happy we can take the girls to see them tonight. The festivities start at seven o'clock. Qavah is most interest in the 'cello and I'm sure will be impressed tonight.

This kind of report is what we longed to be able to write to you, and the joy we have in our hearts is overflowing. The circumstances are what they are, but that is why these good days are even better. All those times we cried out to God for mercy have come down to this: we trust God more completely, we understand that we do not have the control, and we are even more enthusiastic in our celebrating, recognizing that every day is a gift.

Enjoy your Sabbath rest. I won't be posting until after the weekend. See and hear the Hall family at www.halltrio.com

Red Buds

This morning Kathryn had a very early appointment with a wound care specialist. The sun was just coming up on the horizon when we got on the interstate heading toward the hospital. The atmosphere was pink from the early sun, but the Red Bud trees were really showing off! The "red" color is more of a purple - pink, and they are plentiful here in Virginia. I think this is one of the prettiest places in the world in springtime. Probably everyone thinks that about their hometown.

Kathryn's appointment went well. The wounds on her legs and hand are healing after two months. She knows that the drugs she needs for her GI issues have side effects and this is one of them. It take even a paper cut weeks to heal, but the GI medication is helping so much that she is willing to live with being very careful. We did some writing together today, and I found that to be a good way to use our creative skills.

Qavah has been getting better too. We have heard from the doctor in New York. The research team there is willing to accept her and work with us, but we are not completely sure about entering her into a "research" program. Once in the program, there are expectations that the scientists will have for her. If she were old enough to tell us, "This is what I desire," it would be easier to jump in or out with both feet. We pray about it all the time. We are looking for an answer. We have a hopeful expectation, the same as with Kathryn, that God has a plan and He will bring it to pass when the time is right.

Seeing Jesus

The last time I took Qavah to the lab for her blood work she was sitting on my lap about to feel the "little pinch" as they say, when suddenly she turned to me and said quietly, "It's okay, Jesus is here." The phlebotomist heard her say that and stopped to ask, "Qavah do you see Jesus?" Qavah said, "yes, standing right there," pointing to the space beside our chair. Tears came to her eyes and she said, "I believe you Qavah." Then she turned her attention to me and said, "She is not the only child to say that, and point to that spot." We all stopped for a moment to let the feeling of awe pass. He was there giving Qavah special grace.

On the bulletin board in the lab are photos of children; regular visitors to the lab. Some are smiling brightly, some are jaundiced and balding from their chemotherapy treatments. All have to be brave and are called to a life that is filled with challenges. But the two lab technicians work to praise and worship music. They told me when I took Qavah back today for more testing that they see their job as a mission, and look for Jesus to show up as they work with the children.

This calling to care for the sick has its heartaches, but it also has great rewards. We see Jesus in our lives as never before. He said in His word He will never leave us, but because He is invisible to us we forget His presence is here. It is our girls who have seen Him in their suffering and remind us that His love and compassion surrounds us as we go about the daily tasks of caring for them. Paul prayed over Qavah today that she will continue to see Jesus, and that His friendship will be very real throughout her life. I long for that for all of our children more than anything.

As I was rocking Qavah to sleep tonight to her lullaby music the words of this song were like dessert at the end of a good meal. The words are for all of us no matter how young or old. Enjoy them as you close out your day.

Heavenly Father - (words and music by Troy and Genie Nilson)

Your Heavenly Father is holding you,
Keeping you safe and warm;
His love surrounds you and holds you tight,
Sheltered in every storm.

You are His child
He loves you so
He'll never leave,
He'll never let go.
He'll stay beside you
All the night through
Your Heavenly Father is holding you.

Your Heavenly Father is smiling now,
watching you fall asleep;
Trusting Him, slowly you close your eyes,

Wrapped in His perfect peace.

Showers

Today is a showery day. A light mist has been falling off and on all day. But that hasn't dampened our enthusiasm. Kathryn and I were invited to a Bridal Shower this afternoon. We prayed that she would feel well enough to go because the bride-to-be is very special to us. By one o'clock we knew we would be able to go, so we got all dressed up and went! It was wonderful to see the bride open things like a vacuum cleaner and get so excited. We hope Neil and Aleah have a wonderful life together and that they will love and honor God with their lives. I also won a beautiful scented candle to bring home to remind me of this special day.

Paul stayed home with Qavah this afternoon. She is still running a fever but it has been staying down around ninety-nine. Her eyes don't look as glassy today and she even wanted to get dressed this afternoon. We have been praying over her several times a day. Last night we woke her up to give her some medicine and she asked us if she would be better "tu-moaw-wow." We told her it was possible and assured her that our prayers mattered to God and He was listening. She said, "I don't like being sick." That's a simple statement and one we can all relate to.

Kathryn and I have been trying to finish our Bible Study in Psalms before Passover. Before we know it the day gets away from us and we are behind schedule to finish. But we are learning a lot of good things about the Psalms sung by the chosen people on their pilgrimage back to Jerusalem each year. They remind us that life is a journey, and with every step, God is with us.

All dressed up and ready to go to the Bridal Shower:

The Cupboards are Full

Paul came home for dinner and all of us girls were sound asleep. We slept most of the afternoon away. Kathryn is feeling a little better but just when I think Qavah has made a turn her temperature rises again.

For the past week I have been saying that I have to go grocery shopping. But then as if by magic I throw one more meal together with what is left in the freezer. But tonight Paul said, "We have to go shopping." Maybe his dinner wasn't so great! So we went shopping with a long list. Our cart was so full we could hardly push it to the check-out. Once we got everything home the girls met us in the kitchen with their spoons ready! They both like fruity snacks like applesauce and baby food bananas so we bought plenty. Now that everything is put away I feel rich. Instead of wondering what I can fix for dinner tomorrow, I have many choices. It's just an ordinary post about grocery shopping, but my heart is so full of gratitude. I'm grateful for Paul's work that provides income, that Kathryn can eat again, and that God supplies all of our needs. His compassion is seen in my cupboards tonight. I love Him so much for the way He keeps on giving.

Brave Little Warrior

Qavah had her transfusion this afternoon. Although Qavah is type O positive, her hematologist has planned to transfuse her with type O negative blood for the next couple of months and then draw her blood at the end of that period to be analyzed again for Diamond Blackfan Anemia. In the meantime we will continue with monthly transfusions and pray for Qavah's situation to change for the better. Right now she is sleeping and her fever is back. Her red cells disappear faster with fevers, so we'll have to get her blood count taken again soon if the fever persists.

On the way to the hospital this morning I called Paul on his cell phone to ask him to pray for us. The stresses of dealing with illness everyday had us all on edge this morning. To complicate matters, Kathryn vomited all her morning medications after they had been inside of her for only forty-five minutes. Some of her medications are absolutely necessary to keep her functioning so between Kathryn, Paul, and myself, it was decided that she should take everything over again. Although Kathryn accomplished a lot today, she hasn't felt very well. She is especially thankful to have her classes finished.

It isn't strange or odd for Paul to stop what he is doing to pray with me. While I listened to him pray via cell phone, he spoke in particular about the circumstances in our lives right now that we can do nothing about. To give that all over to the One Who can handle it is something we have to do for our mental health. There is actually a feeling of physical relief we have after we have prayed through a tough situation. When we struggle together, pray together, and have faith together, we have been better able to keep going. The joy of being in all this together is that when the victories come we can rejoice together, too.

Sweet Qavah

We just got home from the hospital tonight after taking Qavah there with a temperature of one hundred and two. Her CBC is 6.7. Her white count is very low at 1.8. Her blood was typed and cross-matched and she will get her blood transfusion in the morning. We brought her home for the night. She is very weak and wants to be wrapped in a blanket with her pacifier. This is the first time I have seen her like this. It is hard to believe that she has fought fevers and infections without much help from her own blood supply all these years. This afternoon she said, "I'm sick and want to go to the hospital." So I took her. When the test results came back it was clear to me that she knows her own body. I don't know how hard of a battle this is going to be for Qavah, but she is a fighter and I am hoping that a transfusion will help her feel stronger for the days ahead.

We knew when we were asked to take Qavah that there would be days like this. It has not caught us off guard. But as with Kathryn, we long to help her and feel frustration when there is really nothing we can do. Tonight both Kathryn and Qavah have some health challenges, but they have both fallen off to sleep in their cozy beds knowing they are loved.

Qavah absolutely loves the story of David and Goliath. She has asked me to tell it to her over and over again. Tomorrow I will remind her that young David was able to fight the giant because the Lord of Hosts was with him. I'm glad she loves the story of David's victory because her story is very similar. Her "giant" is an undiagnosed blood disease, but her God is the Lord of all. And David said to Goliath, "you come against me with the sword, spear, and javelin, but I come against you in the name of the Lord Almighty!" (1 Samuel 17: 45) Those are powerful words from a small boy, the youngest of the family. And those are words Qavah loves to hear.