Such a good day!

The surgeon called me back after he finished the work on Kathryn's mouth and said, "The platelets worked beautifully!" It was as we hoped and prayed. There was very little bleeding. In addition to that blessing is the fact that an open wound on Kathryn's knee has a nice scab on it now. She fell in the driveway three weeks ago and skinned her knee. Without functioning platelets it would not heal. Tonight it is well on its way. We spent the afternoon praying and praising God for all He has done for our family this month. We had our share of health challenges and so have many of our friends. We had a lot to pray about.

Again I thank you for your prayers. I know God is hearing them. We are thankful to the Red Cross for their help also. We are praying for a more normal month in May. There are several special events coming up and we hope to be able to join in and have some fun with family and friends.

Kathryn and I read Psalm 16 this afternoon and decided to call it Psalm Sweet 16 to remember it. Enjoy!

Psalm 16

A miktam of David.

¹ Keep me safe, O God,
for in you I take refuge.

² I said to the LORD, "You are my Lord;
apart from you I have no good thing."

³ As for the saints who are in the land,
they are the glorious ones in whom is all my delight.

⁴ The sorrows of those will increase
who run after other gods.
I will not pour out their libations of blood
or take up their names on my lips.

⁵ LORD, you have assigned me my portion and my cup;
you have made my lot secure.

⁶ The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.

⁷ I will praise the LORD, who counsels me;
even at night my heart instructs me.

⁸ I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.

⁹ Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,

¹⁰ because you will not abandon me to the grave,
nor will you let your Holy One see decay.

¹¹ You have made known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.

A Bit of Anxiety

Kathryn is not very settled tonight. She is having some anxiety about her mouth surgery in the morning. Her doctor has ordered a platelet transfusion for 7 am and her surgery is scheduled for 11am. The grafting will be done by the same surgeon who grafted two teeth in 2003 before we knew about HPS. We have been reminding Kathryn that this surgery will be different than the last because we know what to do to help her body heal. She experienced prolonged bleeding and slow healing with the last grafting. In spite of our reassurance she is anxious. This is another test of faith so I'm asking God to give her peace tonight while she sleeps. The goal is to preserve this smile.

The Children's Inn

There is a safe harbor for the children in research studies on the campus of NIH.  The Children's Inn has been a huge blessing to thousands of families.  Each morning we left the Inn in a little red wagon, perfect for children to use when traveling back and forth to the research center.  We could have used a shuttle bus but the entrance of the research center was such a short walk from the Inn that we decided to walk each day.  If we had even ten minutes between doctor visits we strolled outdoors with the wagon where every flower bed was neatly cared for and had something blooming in it.

At the end of a long day we headed back to the Inn and were greeted by volunteers who had left a special gift for all the children in their little mailboxes.  The staff also kept track of our coming and going so they always knew where to find us if a doctor called.  There was a little refreshment station in the lobby stocked with homemade baked goods and coffee in the morning, and iced tea and lemonade in the evening upon our return.  

While parents looked a little frazzled by the end of the day, the children were ready to play with each other.  Qavah made friends easily and played in the playroom until dinner.  Church and civic groups volunteered to bring in dinner on two of the nights we were there.  All the families came to a main dining room and we were treated to a wonderful hot meal.   There were people staying at the Inn with seriously ill children and the love that surrounded them was a healing force.  I met an Amish family with two little boys undergoing stem cell transplants.  They had been there for six months.  They told me that all during that time their family and neighbors had been harvesting and planting their farmland for them. 

I felt every range of emotion as we shared our lives at the Children's Inn.  Parents needed to talk about their journey while the children needed to forget about being sick.  Of interest to me was the number of families that told me they come every year and the children can hardly wait to get there.  One mother told me that the children look at the research as something they have to get through to get back to the Children's Inn for the fun.  Our first day at home Qavah said, "I miss our castle," (meaning the Children's Inn).  It was like a castle as you can see in the following pictures.  More than that, it was a fortress and a place of refuge;  a good physical reminder that God is our fortress and refuge and a very present help in time of trouble.

 The playroom

Qavah looking out of the 5th floor research clinic overlooking The Children's Inn

A play yard gave the children a chance to get outside

 Our wonderful Red Wagon

Back Up and Running!

A technical problem with our cable made it impossible for me to come home and post an update. But the problem is solved and now I hardly know where to begin. The cable is back up and running and so are we.

Qavah was a champion last week as we took our map of the research center and followed it to roughly eight appointments a day. Qavah was cooperative beyond belief and that made the job of all the doctors, nurses, and technicians, so much easier. The best part of the week was the meeting we had with the bone marrow failure team at the end of the week. They were excited. I could tell that they had something to tell us that would be significant. They reported that the immunology department had discovered that Qavah's neutrophils did not recognize or go after and destroy bacteria as it should. I was told that the research team at NIH have mice with that condition but Qavah is the first human to be identified with that condition. That finding was so important that we have been asked to come back as soon as possible for further immunology studies. It also means that the mice are available for drug testing leading to a cure. They are currently testing antibiotics to do the job that the neutrophils refuse to do.

Each department gave me some good advice about how to handle Qavah's skin rashes, deafness, iron overload and more. I thought the NIH would simply collect data but they did so much more than that. Many of the doctors taught me and offered advice. When I mentioned how surprised I was by all the help I received, one of the doctors said, "Well, remember that we are doctors first, then scientists."

The week was non-stop testing in addition to a blood transfusion and bone marrow biopsy. Qavah asked for very little in return. However, one morning she woke up and said, "Mama, I want macaroni and cheese for lunch." I prayed right out loud, "Lord, please give her mac and cheese today." Our schedule allowed us 35 minutes for lunch in the cafeteria and mac and cheese was not on the menu previously. Each time she mentioned wanting to eat lunch I thought, "O Lord, I don't want to disappoint her!" I pulled her in her little red wagon to the cafeteria that day and the menu in the hot food section read, "Today's special, Macaroni and Cheese." I could have cried but Qavah was looking through the glass at the hot food choices shouting, "Look, Mama, there it is!" Some people might think that was just a coincidence, but when we sat down to pray, Qavah and I thanked God for giving us the desires of our heart. Of course I had to snap a picture. I want her to look at these pictures in the future as evidence that God hears us and He cares.

NIH Update (from Kathryn)

Earlier in the week, the phlebotomist took 14 vials of Qavah's blood.  As a result, today's CBC count was low enough to schedule a transfusion for late this afternoon. 

The bone marrow aspiration that took place early this morning went better than expected.  Mom said the entire procedure was very interesting.  The doctors were able to collect the bone marrow and get a biopsy.  Qavah woke up from the anesthesia rather quickly, ate a big breakfast, walked around, and then began playing!  The doctors and nurses were utterly amazed.  After the procedure was complete, a special team of scientists, decked out in white uniforms with head masks, came to collect the bone marrow for "freezing," so that it can be preserved for future research.  Mom commented on how she's always watched "research in action" within the science and medical world on TV, but now she's living it.   

Qavah had another audiology appointment scheduled for 1:00pm today. Yesterday, Qavah's hearing exam showed that she is completely deaf in her left ear.  NIH is now wanting to figure out the cause. The doctors need to know if the ear was not formed correctly.  So tomorrow, Qavah will have a head scan using contrast dye.  Interestingly, the ears are developed at the same time as the kidneys.  Therefore, people who have ear issues often experience kidney problems (and vice versa); Qavah only has one kidney. Hearing loss can also be a side effect of the drug Ex-Jade, which Qavah takes every morning. 

Mom is feeling physically stronger each day, even though the schedule is demanding and long. Mom has tried her best to find some fun activities to do with with Qavah in between all of the doctor appointments and tests.  They've also tried to go to bed early.  Mom and Qavah are looking forward to Dad's arrival; he'll be going to pick them up on Friday.

Thank you again for your continued prayers, comments, and phone calls.  The Lord is providing Mom and Qavah the strength, endurance, and patience they've needed for each day, just like His Word promises.

First Day

We have finished the first day of data collection here at the NIH. Qavah's appointments included a full body exam and physical, a visit with the eye institute, and the ear, nose, and throat clinic. She had her first Nasopharyngolaryngoscopy. That big word means she had a small hose inserted all the way up her nose until it curved back down into her throat. When the camera reached her throat she sputtered and gagged while pictures were being taken inside the passages. That was done without sedation. It was quite remarkable to watch it on the monitor. After the procedure Qavah got stickers and cheers from everyone. As we were walking out of that department she looked up at me and said, "I like it here Mama." By the time she received eye drops to dilate her pupils she had been given rewards of candy, toys, a balloon, and little cans of apple juice. There are so many rewards for cooperation here in the children's research center that she is positively going to have to give some of these things away.

We have had a lovely day together. God has given us the strength to meet the demanding schedule. We took our time walking back to the Children's Inn and our spirits were as bright as the spring sunshine. I keep thinking about this week as more than research. It is a hopeful journey we have begun and every one here is dedicated to the same goal; to be able to offer healing solutions to those who struggle with their health. Qavah seems undaunted by what has been required of her and that is such a gift.

We are going to watch a DVD and get to bed early tonight. Tomorrow begins the next phase of research which includes blood work , dental exam, hearing exam, and an ultra sound. The house rules at the Inn include absolute quiet after 9 PM. It is only 8 PM and everyone must be as exhausted as we are because I haven't heard a sound in the hallways all evening. I have so many more things I would like to write about, including our wonderful trip to Bethesda, but I will save that for another day.

God has blessed our day and has surrounded us with many loving and cheerful people. We are in good hands. Thank you for your prayers.

First Day

We have finished the first day of data collection here at the NIH. Qavah's appointments included a full body exam and physical, a visit with the eye institute, and the ear, nose, and throat clinic. She had her first Nasopharyngolaryngoscopy. That big word means she had a small hose inserted all the way up her nose until it curved back down into her throat. When the camera reached her throat she sputtered and gagged while pictures were being taken inside the passages. That was done without sedation. It was quite remarkable to watch it on the monitor. After the procedure Qavah got stickers and cheers from everyone. As we were walking out of that department she looked up at me and said, "I like it here Mama." By the time she received eye drops to dilate her pupils she had been given rewards of candy, toys, a balloon, and little cans of apple juice. There are so many rewards for cooperation here in the children's research center that she is positively going to have to give some of these things away.

We have had a lovely day together. God has given us the strength to meet the demanding schedule. We took our time walking back to the Children's Inn and our spirits were as bright as the spring sunshine. I keep thinking about this week as more than research. It is a hopeful journey we have begun and every one here is dedicated to the same goal; to be able to offer healing solutions to those who struggle with their health. Qavah seems undaunted by what has been required of her and that is such a gift.

We are going to watch a DVD and get to bed early tonight. Tomorrow begins the next phase of research which includes blood work , dental exam, hearing exam, and an ultra sound. The house rules at the Inn include absolute quiet after 9 PM. It is only 8 PM and everyone must be as exhausted as we are because I haven't heard a sound in the hallways all evening. I have so many more things I would like to write about, including our wonderful trip to Bethesda, but I will save that for another day.

God has blessed our day and has surrounded us with many loving and cheerful people. We are in good hands. Thank you for your prayers.

This Good Day

The preparations have all been made and we are leaving in the morning for Bethesda. Paul is finishing up some outside chores as the evening shadows are beginning to fall. This has been quite a week. I have seen and tasted that the Lord is good.

We will be staying at the Children's Inn for the week. I have prayed that we will be a blessing to the other families we meet there. I am sure they will bless us. I have also prayed that Qavah will have some good experiences to remember long after we are home. I have some little gifts prepared for her to unwrap at the end of each day. In my conversation with God about Qavah this morning I said, "I just want her to embrace her life with all of the hardships and to know without a doubt that she is loved." It wasn't in audible words but I heard a still small answer. "I want the same for all my children."

Lord, on this Sabbath Day, we rest in the knowledge that you loved us so much you sent your Son to redeem us. Because of your great power we will be given the grace to face all hardships and be at peace in your loving Presence. Amen

Visit the Children's Inn www.childrensinn.org

Strength Beyond My Own

Our trip to NIH begins this Sunday. I opened the packet of information from the NIH this morning and saw that Qavah's week is simply packed with appointments each day. Before my surgery I prayed and asked God to show me explicitly that I could handle the task ahead by giving me supernatural strength after the surgery. When I asked the nurse if I could start walking the halls four hours after the operation she looked astonished. As we were walking she told me that she had never had a patient get up and start moving in such a short time. As we talked I recognized that the strength I had been given was not my own. That strength has continued and is confirmation to me that the plan for Qavah next week has been established in the Heavens.

The sweetest part about taking this time out for my own health has been the time I have had with God. He has quieted my heart and drawn near to me to heal me in a supernatural way. The quietness of our home, and the friends who have come to keep things going have been of His plan. When I think of how He has arranged all of my days and sees to every detail, I can only praise Him for the way He has taught me to trust Him. This quiet time with Him has shown me that I do not have to expend the energy to see to every detail of my life. He is doing perfectly fine without my interference.

"What a relief to know that we can rely on you, O Lord. It causes us to breathe more deeply, sleep more soundly, choose more selectively, love more unselfishly, and live more sanely. " ~Patsy Clairmont

Home At Last

My mother is now home and resting comfortably. Over all, Mom looks so much better then she did before surgery! This morning, she was able to eat an omelet for breakfast with very little pain. The process of leaving the hospital and car ride home was understandably tiring, though. So, Qavah and I curled up with her on the guest room bed to watch a movie, but it wasn't long before Mom fell into a deep and peaceful sleep.

I'm so thankful my mother has not only returned home, but is feeling better than she has in a long time. It has been a strange and sad experience to watch my mother be so sick over the last several months. And as I visited my mother in the hospital last night, I experienced mixed emotions. I was of course overjoyed to see Mom but I didn't like her being the patient. I wanted to exclaim aloud, "You're not supposed to be in that hospital bed! I am the one with health issues, not you!" I now understand what my mother means when she talks about the difficulty of watching me suffer. So with a grateful heart to God, I look forward to Heaven where neither one of us will have physical ailments. We'll just be mother and daughter, friends, and Sisters in Christ worshiping together the One who created us.

-Kathryn

Post-Op Update from Kathryn

My mother came into my room around six o'clock this morning to say good-bye before heading to the hospital. Fortunately, I was awake enough to pray over her and get one more hug. Four hours later, just about the time I was beginning to wonder if there was a complication during surgery, my father called to say the operation was complete. The surgeon had successfully removed the gall bladder with no problems and Mom had just been wheeled to the recovery area. To my astonishment, Mom called me herself once she was in a private room. She still sounded groggy from the anesthesia, but it was wonderful to hear her voice nonetheless. She even joked with me, asking if I had cleaned the fireplace chimney like Cinderella!

Mom obviously has abdominal pain where the incisions were made, but she already commented on how the nausea that had plagued her for months was gone. She was planning to spend the afternoon sleeping before a family friend stopped by for a visit. Qavah and I will see her later tonight after supper. Even though Mom was hoping to come home right away, the doctor's recommendation was for her spend the night at the hospital. I will stay in touch and let you know when she comes home. In the meantime, thank you for the many prayers and offers to bring meals. It is a relief to my mother to know that her family is being taken care of while she recuperates.

Strength

Last week Qavah went to the hospital one afternoon with a sudden fever. She was given IV Rocephin just like the last time this happened in Cincinnati. Her red cell count dropped rapidly and I took her back to the hospital for a transfusion the next day. She was dehydrated, and her veins were flat, so it took some work to place the IV line into her vein. I held her and prayed into her ear the first three tries, calling on God to give her strength. On the fourth try I asked if there was any treat I could buy for her that would make her feel like a brave soldier. She replied, "I really would like a yo-yo." She was very brave, and bought an orange yo-yo as a reward.

In an attempt to be rid of the nausea that I have been dealing with since last November, I am going to check into the hospital tomorrow and have my gall bladder removed early in the morning. I'm praying for supernatural strength to recover quickly and I still plan to take Qavah to Bethesda next Sunday. It is God Who gives us the strength to heal. Watching our girls being made strong in their physical weakness has me convinced that I will be able to go in His strength next week if that is what He calls me to do.

On Friday during my pre-op blood drawing, Qavah held my hand and rubbed my arm to comfort me. I thought about the timing of this surgery. Paul will bring her to the hospital for a visit after the surgery so she will see me submitting to the hospital routine, the IV, and bed rest. The following week she will have to go through many procedures at NIH and I hope she'll recall that all of us have to submit to medical care at some point in our lives whether we want to go through it or not. And if I'm really brave maybe I can have a yo-yo too.

He gives strength to the weary and increases the power of the weak. Isaiah 40:29

Filling Out Forms

I sat in the doctor's office today and started filling out a form that was supposed to give him a good idea of why I was there. In the past two months I have been filling out forms for the research study that Qavah will be entering this month at NIH. So as I sat there thinking about myself and the nausea that I have had since November, I decided to have some fun. Where the intake form said "Work" I filled in "Housework." Where the form asked "Position" I filled in "Queen Bee." No one even asked me about it, however I did enjoy filling out the blanks with less seriousness.

On the drive home I called Kathryn to talk about dinner and we planned a summer chicken salad on spinach leaves. I asked Kathryn to peel two carrots in preparation for dinner and smiled to myself as I thought about the "Queen Bee" on her way home to get dinner ready for her family.

Faith Clothing

Three years ago Paul and I had the special call on our lives to adopt again. We didn't have much to go on but we knew that Qavah would be between the ages of three and six years old. The very next day I went out to the store and bought a little frilly dress in a size that I thought would be appropriate. Qavah wore it for the first time today. To our surprise Qavah was a tiny girl but at last is wearing a size six and has been looking forward to wearing the dress.

There is something about the typical adoption process that makes it a very unique experience. All the while the adoption is in process, only the Lord knows who in the world that new family member is. It is truly a thrill when that child finally has a face, a name, and a clothing size. So if you are waiting for an adoptive child, don't be afraid to feed those dreams with a few clothes in the closet for their arrival. It may take a couple of years before they fit, but seeing those little clothes in the closet is a reminder that you have taken a step of faith.

Dressed for Easter Sunday: Paul Burton, Kathryn, and Qavah


Qavah wearing her dream dress. She asked to leave it on all day; a real Princess.

Today we are rejoicing that death has been swallowed up in life, and we have the promise that we have been forgiven and set free. Jesus paid our debt in full. We are also rejoicing as a family that everyone was well enough to go to church. It has been a wonderful day.