Monday, March 31, 2008

Spring Cleaning

The idea of spring cleaning has popped into my head several times lately. It is the time of year to go through closets, pretend we are moving, and get rid of things we haven't used or worn. That kind of cleaning requires decision making skills I don't seem to have right now. For the past several days I've opened a closet door, thought about getting started, and shut it again. What I want to be doing is far more valuable. I want to spend time playing with my girls. I want to sit in Qavah's room after I tie her little apron around her and watch her playing with her kitchen set. The "work" of her day is the business of "play."

Perhaps because we have raised three other children I know how quickly these years pass and soon Qavah will be helping with closet cleaning. Kathryn has had some pretty tough days and nights because of some cuts on her legs that have refused to heal. We have been sitting on her bed looking through cooking and decorating magazines just dreaming and talking. Nothing is getting done by way of chores but it doesn't seem to be bothering me. So tomorrow, Lord willing, Kathryn and I are going to look at more magazines, Qavah will cook me some pretend meals, and we'll all live happily with cluttered closets.

Friday, March 28, 2008

Extrordinary Day!

I LOVE having a four year old again. I was invited to the zoo with a group of special moms and their children. Before I left the house with our little fancy round sandwiches for a picnic lunch, Qavah and I brushed our teeth with bubble gum flavored Crest with blue sparkles in it. When there was no reason to buy that sort of thing, I didn't know what I was missing. I am having a ball. I can remember cleaning carrots for Colin so he could hide in the clothes hamper, pop out with his carrot and say, "What's up doc?" I would crack up watching him play Bugs Bunny, and now I get to do these things all over again with child number four. It's one of the perks I guess. Qavah really enjoyed the animals but when the llamas (running free) headed in her direction looking for hand-outs, she scurried up into my arms faster than a speeding bullet. Here are some pictures of our day.

Qavah meets a monkey:


See the sign on the baby goats! There were no takers today!


This is what a gray elephant looks like when it rolls in good old Virginia red dirt.


New friends:


Friend, Ella, better known these days as Oma:

Thursday, March 27, 2008

Beautiful Springtime

We had a good day. Kathryn had her Remicade treatment and decided to come home to sleep it off awhile. Qavah also came home and took a nap. The sunshine and spring air were over-the-top today. The girls slept upstairs with a window open from which I could hear the call of various birds. I'm sure they were all saying, "What lovely weather we're having!" It was a perfect day, and we rejoiced in it. God has been so good to us.

Wednesday, March 26, 2008

What a Picture

Our website is just a little different tonight. I needed to take a new picture of myself for a speaking engagement I have in May. The church wanted a picture of me so Kathryn told me where to stand and how to smile. What you can't see is that I am wearing old jeans and no shoes, but otherwise I think I look professional enough!

It is the day before Remicade. Usually Kathryn is totally bedridden with abdominal pain. Since the dose of Methotrexate was increased last week she has been better in every way. It took many drug trials to find the right combination, but finally Kathryn is having days without miserable GI issues. We've been thanking God constantly. We thanked Him several times today that Kathryn could eat on the day before Remicade and even enjoyed a little chicken salad for dinner. We're getting ready for a little campfire tonight. Paul Burton is coming home from work at nine o'clock and we are going to toast marshmallows over our fire. Qavah and Kathryn are so excited about it.

Last night about ten o'clock Kathryn said, "I'm needing a change in my life!" So I found a bottle of hair color and got the scissors and we had a great time coming up with a new look! What fun it is to be a girl, love change, and have the ability to open a box and be transformed. We are having so much fun! Thank you, everyone, for your prayers and constant encouragement. What a deep valley we have journeyed though; the view from the mountain top is that much more beautiful because of it.

Kathryn with her new hairdo:


Dawn helping Qavah toast her marshmallow:


Paul Burton, Dawn, and Qavah:


Qavah enjoying the "fruit of her labor":


Paul Burton with the "perfect" marshmallow he made for Kathryn:

Monday, March 24, 2008

Bedtime Stories

Qavah has a favorite bedtime ritual. She likes to have her lullaby music turned on, grabs her blanket, and heads toward the rocking chair to wait for me to settle into it. Then she'll curl up in my lap and ask for a story. I have an ongoing story that I'm making up about "Tootsy the Butterfly" and her adventures. Because she shows up in every story, Qavah is always ready to hear the name of Tootsy. They've had all kinds of adventures in my stories including showing a young bear named Sugar where there is a bee hive filled with honey. Now, wherever she finds a butterfly in the course of her day she'll say, "Look it's Tootsy!" Butterflies are suddenly being spotted everywhere. She finds them on T-shirts, shoes, books, stickers; even in a wallpaper pattern. This is another way of telling me, "I'm paying attention, Mom. I'm always learning." That's a lot of fun for me.


Sunday, March 23, 2008

The Best Blood

We were recently talking with our family about Qavah's transfusions and the risk of infection. With the lifestyle of some Americans being what it is, unfortunately we have to be concerned about Qavah getting a transfusion from an infected stranger; their blood possibly being tainted by Hepatitis C or the HIV virus. Because of that she is periodically tested for HIV. Qavah is type O positive, and Granddaddy mentioned the possibility of using the blood of our family members with the same blood type for her monthly transfusions. I will talk with someone from our local Red Cross about that. When it comes to our beloved daughter, we want the best; blood we can count on being pure. It is the difference between life and death to her.

If we were to find that Qavah had been infected by a bag of "bad blood" I don't know how we would manage our grief. She is so tiny and innocent. The illnesses she could acquire are typically the illnesses of those living sinful lifestyles and she would be another innocent victim of the schemes of the enemy. There are now websites devoted to help people who have received death from what was supposed to be the gift of life.

The sacrifices we are willing to make on Qavah's behalf are born out of our love for her. As someone said recently, "Qavah is one precious little human being." Our love for Qavah is so great we would give our own blood for her. This is a truth from the pages of scripture that I understand more fully this year at Easter. The Father has made the way clear for all of us to live in freedom, by giving us His Son, and the gift of eternal life, if we will believe Him. Qavah left for church this morning all dressed up to celebrate something she doesn't understand yet. As she grows and learns more about His great love for us, our prayer is that she will accept no less than the best blood. The blood that once and for all we can count on for all eternity.

"This is an important lesson for us today. For under the old system, gifts and sacrifices were offered, but these failed to cleanse the hearts of the people who brought them. For the old system dealt only with certain rituals - what food to eat and drink, rules for washing themselves, and many other rules. The people had to keep these rules to tide them over until Christ came with God's new and better way. He came as a High Priest of the new and better system which we now have. He went into the greater perfect tabernacle in Heaven, not made by men, nor part of this world, and once and for all took blood into that inner room, the Holy of Holies, and sprinkled it on the mercy seat; but it was not the blood of goats and calves. No, He took His own blood, and He with it, by Himself, made sure of our eternal salvation." -Hebrews 9: 9-12

Thursday, March 20, 2008

Rare Things

Imagine having a blood disorder that is so rare that there is no known treatment. That's Qavah's situation. The doctor today diagnosed her rash as something other than Lichen Planus. Therefore we are back to not having any real proof of what is actually destroying Qavah's cells. We still suspect that the theory of graft versus host disease is correct. With no solid diagnosis, there is no treatment plan and we have been put into the position of having to trust that God will open doors to the medical intervention Qavah needs. It wasn't the outcome we were hoping for today. For those interested, the diagnosis for Qavah was Pityriasis Rosea. It runs its course in about eight to twelve weeks and the itching from the rash can be calmed by baths and soothing lotions. It is not contagious.

Kathryn struggled with her Methotrexate dose today and slept most of the day. Her doctor increased her dose. She likes to refer to those days as "pajama day." She is wide awake now because she had some fantastic news late this afternoon. Her professor emailed to say that the final rewrite of her thesis has been accepted. I'll quote her, "good conclusion - you're done!" Those four words are packed with meaning. Her cap and gown were ordered today and I have tears running down my face as I type this. The victory is so sweet. Congratulation, Kathryn!

Tuesday, March 18, 2008

Qavahisms

Qavah came into the house with a huge bouquet of daffodils and presented them to me. Referring to the beauty of springtime and her bright smile I cheerfully took them and exclaimed, "Hope springs eternal!" To which she nearly fell on the floor laughing. Between hilarious laughter fits she said, "Hope spwing a turtle! Mommy you are so silly!"

We lit the candles in the bathroom last night and kept the lights off so I could tell Qavah stories by candlelight while she was taking her evening bath. I was halfway into my make-believe story about a little monster who was too afraid to say, "Boo" and suddenly she took over the story and finished it by giving the little monster a lesson in how to look fierce and say boo with gusto. It was very creative.

I spent time on the phone today arranging to have Qavah seen tomorrow about the rash she is experiencing. I also took Kathryn to her GI doctor today and that was encouraging. The things he has done to get the bowel issues of HPS under control have been extremely helpful. Kathryn was able to come home after the appointment and do a little school work. We just keep moving forward by faith.

We have had some very good moments lately. Our fears are lessoning their grip on us. Especially with Kathryn's bleeding episodes. I was remembering our Bible lesson from Sunday evening when my husband Paul was teaching from the book of Joshua. What would have happened to God's people if they got halfway across the Jordan and let fear stop them from continuing on to the promised land? Suppose they had been paralyzed by fear when they saw the waters of the Jordan "heaped up" on either side during flood stage? We do have to continue taking those steps forward even though fears seem to add eighty pound weights to our trembling legs at times. "Walking by faith and not by sight," implies moving. We have enjoyed so many things over the past several months, and one of them is facing the hard things realistically and then moving forward by faith. Kathryn and Qavah do that every day. I love being their Mom so much, and loving them has greatly increased my faith. The scriptures say it best, "Perfect love drives out fear."
1 John 4:18

Sunday, March 16, 2008

Qavah's Blood Cells

Since we have been taking care of Qavah and have read her medical records, we have suspected for a long time that a correct diagnosis of her blood disorder was made when she was just seven days old. One doctor noted in her records that Qavah's birth mother did not have prenatal care and that the possibility existed that the placenta was leaking during the pregnancy causing Qavah to take in her birth mother's blood. That could be the explanation of why Qavah's cells attack each other and within four weeks her labs show a low enough blood count for a transfusion. The doctor used the term "graft vs host" to describe it. Through a miraculous series of events in the past week, Jennifer found documentation to support that theory. The evidence is in a rash on Qavah's skin that I have not been able to get under control. The rash is unusual and a very specific type. In Jennifer's research she was able to find pictures of it. It is called Lichen Planus and is seen in people with a graft vs host diagnosis, more common in people who have received organ tranplants. If this is correct, there is a drug therapy available that would suppress her immune system and possibly bring the disappearing red cell mystery to an end and clear up this persistent rash that causes her a great deal of discomfort.

I am especially grateful to Jennifer for the thought she put into Qavah's problem. She examined the rash last week when she and Colin were here one evening. Then she pondered it until she could plug in the right words on Google to come up with the pictures identifying the rash. We are going to present these findings to Qavah's doctors this week. Qavah's monthly transfusions may soon be a thing of the past. God's tender care of Qavah is so evident in this. He has met her needs at every crossroad. I am humbled that He chose us to be her family, and that God chose to reveal this mystery to her "sister Jennifer." Why would He give us the knowledge about Kathryn having Hermansky-Pudlak Syndrome and give Jennifer the right path to Qavah's diagnosis? It's His pleasure to do so! I'm not totally sure my explanation here is one hundred percent accurate to those who study medicine. But this I do know; we are ready to see the glory of God revealed, and are poised to worship Him for what He is about to do.

Wednesday, March 12, 2008

A Spring Day

Today I took Kathryn to see her PCP and she was able to go over several things with him. It takes a team to address all of Kathryn's problems and we found at her appointment today that her PCP had been completely updated by her hematologist and GI doctor. Her pain management doctor also ordered labs, and although together they represent three different hospitals it has been such a help that they all communicate and know her medications. The last dose of Stimate we gave Kathryn on Tuesday morning sent her body into a real tailspin. She had to have the drug to stop her bleeding but it sent her electrolytes off balance and lowered her blood pressure to a dangerous low. The abdominal pain set in later in the day yesterday and therefore her pain management along with electrolyte imbalance had her awake the whole night. All we could do was pray for her and give her hot packs for her stomach to try to keep her comfortable. By mid-day today things had settled down and she was able to eat a little bit. We do have another choice of drug for bleeding episodes called Amicar . Her hematologist will help with that.

Qavah has been interested in everything going on with Kathryn. She watched Kathryn's blood draw today very closely and then told Kathryn what a brave girl she was for not crying. It was really sweet. She has finally met someone who makes as many trips to the doctor as she does. I wish things were easier for both of our girls, but it is good to see them happy in spite of the hardships.

It is an absolutely beautiful spring day here in Virginia. I just talked to my Michigan friends and family this past weekend about their snowy winter and I have to say I'm happy to be a Southerner! These spring days will arrive in Michigan in about four weeks so just hold on!

Tuesday, March 11, 2008

Tuesday update

I was up early this morning to take Qavah for a medical check-up. She tolerated everything so well. Medical staff usually marvel at her composure during an exam. When they find out why she is used to being in a hospital and how much she has endured in the past she gets a lot of extra stickers and rewards. Today she got a new coloring book and crayons. Her blood lab results are looking good. While I was out in the hall speaking with the doctor the nurse stayed in the room with Qavah. When I returned the nurse said, "Does she really play the 'cello?" Qavah just looked over at me and beamed and I said, "Yes, she really does!" They had been talking about music and the nurse thought Qavah was kidding when she told her that.

Kathryn is still struggling with her platelet problems. She feels terrible but the episodes of sudden bleeding have subsided thanks to the Stimate. She is disappointed to be feeling so bad physically when everything "should" be going well. She was able to eat and digest food today. The bloody reflux and bloody taste in her mouth has gone away so eating was pleasurable. When I reminded her that today she was able to get out of bed and able to eat something she didn't seem to brighten. I know this is tough on her. Thank you for your prayers.


Sunday, March 09, 2008

Sunday Afternoon

I just talked to Julie. Dan and Julie drove to Columbus this weekend to visit their married children, Sandra and Joshua. They were caught in the middle of the worst blizzard Ohio has ever had. They are leaving for home in the next hour hoping to get out to the main road through twenty inches of snow. They said that if they can get to a main road and travel southeast for just one hour, they will have better driving conditions for the rest of the trip. I did tell them that the drive home will be worth the trouble! Today we are having plenty of sunshine in Virginia and the daffodils are in full bloom.

Kathryn has had some pretty tough times this past week. First, her ear canal started to bleed, then her fingers. Yesterday her leg started bleeding and today she is experiencing extreme acid reflux with blood in it. I started giving her Stimate on Friday. She had a second dose this morning and we are praying that it will go to work and stop this bleeding before it gets any worse. She is unable to get around today, and I stayed home from church to be with her. We had a quiet morning but are both having to exercise our faith because of the fear that creeps up on us when these bleeding episodes start. We aren't alarmed, but we are cautiously watching for any changes. This morning we talked about her graduation and tried to think about the good things to come. I enjoy our quiet early morning talks. In them I get to know her heart and soul. I'm thankful that she lets me.

When Kathryn is able, I know she will go to her computer to read this post. These verses are for us today, Kathryn. "Let us hold fast the confession of our hope without wavering, For He Who promised is faithful." Hebrews 10:23

Thursday, March 06, 2008

More Sunshine

Although Kathryn had a very hard night because of her earache, we still had a good day today with plenty of sunshine. I went to the pharmacy early this morning and talked to the pharmacist about the ear drops Kathryn was given. She may be having a reaction to them because the pain was worse last night. I found an over-the-counter medication that claimed to take the "ache" out of an earache and we discovered it really worked. After using those drops Kathryn had a better day with less pain and has gone to bed early tonight. She has been awake for two days with this ear problem. She also has a couple of places starting to bleed on her fingers for no apparent reason. It is a mystery. I told her yesterday that it would be much easier to care for her if she had come with instructions. She just laughed at me!

Qavah had a good day and her transfusion went smoothly. During the transfusion I held her in the recliner provided in the room. It didn't rock but it was enough like the recliner in her bedroom that after a story and a couple of songs she fell into a deep sleep. I blissfully held my sleeping girl for almost three hours when suddenly we were jolted into reality by a warm wet stream that soaked us both. After months of being potty trained, Qavah looked stunned! Two juice boxes and a dose of liquid Benadryl were a little too much for her to handle. I was able to give her a bath and had a change of clothes for her in the diaper bag. I drove home with wet pants down into my shoes, but before I left the hospital I was told by the nurses that I won the "Mother's badge of courage" for the day. I don't know if it's my age or experience but driving home with wet pants was not a bother. I looked at Qavah in the rearview mirror and saw that she looked and felt better and that was my goal!

I think Jess made the trip to New York with Qavah sound appealing when she mentioned the train in yesterday's comments. Qavah's records will be sent off to New York tomorrow and I am checking into insurance since she would be entering a research program. We have a lot of decisions ahead of us but a powerful prayer team behind us. We have a merciful, faithful God teaching us every day what it means to lay down our lives. I'm in awe of what I've been able to learn.

Wednesday, March 05, 2008

Busy Night Busy Day

Kathryn and I waited most of the night for the clock to read 8:00 AM. It was late when we went to bed because Kathryn was experiencing a profound ear ache. She had no congestion and no cold, so an infection didn't seem likely, but she was miserable. As soon as the doctor's office opened this morning she got an appointment and had a check-up. There is an open sore in her ear canal that is bleeding and from what the doctor described, it is the same sort of thing that happens to her arms and legs. A small hole opens up and begins to bleed. It is hard to get the bleeding to stop and days before the wound is healed. There are drops to use for her ear and we tried them this afternoon. They increase the amount of pain similar to putting salt on a wound. The dried blood in her ear canal is causing a hearing loss in that ear. We were told to watch it carefully but other than watching for signs of bleeding on her pillow there isn't much I can do.

While Kathryn had her check-up, I took Qavah over to the hematologist in the hospital. We went in just to say "hello." Her doctor talked to me about taking Qavah to New York City to see a specialist in blood disorders. I signed a record release form giving her permission to send Qavah's records but I'm not all that excited about taking Qavah to New York. Driving in New York City is not like driving in downtown Roanoke. We talked a little while about our options then a quick look at yesterday's labs showed a low CBC count. Qavah is scheduled for a transfusion in the morning. Paul and I decided that we would all try to go to bed early tonight to see if we could get some better sleep.

Please pray for the wound in Kathryn's ear to heal over quickly and for Qavah's doctors, who need wisdom. We have the courage of a mighty lion but right now we have the strength of newborn kittens. Now is the time to rest.

Tuesday, March 04, 2008

Taking Thoughts Captive

I read today that a very precious woman, struggling with HPS, has finished her earthly battle at the age of twenty-nine. I have been praying for her, knowing that her situation was serious. She leaves behind a husband and two little children. I couldn't shake off the sorrow I felt for their family all day. I kissed the girls more, paid them more attention, and thought a little more about the health challenges that my girls face. Elizaira's death drove home the reality that HPS at this time has no cure. Thoughts began to take shape in my brain that brought tears to my eyes. How much longer does Kathryn have? How can we make the most of the time we have? How long will Qavah be able to enjoy her life?

These are the thoughts that would completely break our hearts if not for hope. No one is promised a long life. Tonight the thoughts that turn my mourning into dancing are filled with hope and light. Kathryn knows the saving grace of Jesus. She has seen heaven and knows in part what she has to look forward to. She has no grief about leaving this world knowing we will all be together again in a place where there is no sorrow or sickness. I am grateful that Kathryn talks so much about heaven and her joy in knowing her eternal security is sure. It relieves my sorrow.

Because God so loves Qavah she is becoming interested in her little bedside Bible. She started to pray along with our family and talks about Jesus. She heard the story of David and Goliath last week and is thrilled that God made David stronger than the big giant from Gath. She opens her Bible and pretends to read me the story of the brave little shepherd boy. Because God is writing His Word upon her heart I have faith that when her need for courage is at hand she will remember how He came to the aid of young David. The girls have such a simple faith. They seem not to care about little unimportant things. They seem to have a keen understanding that this world is not their home.

I'll close with a picture of a young wife and mother who faced the challenges of this life and fought hard against the manifestations of HPS. The first time I saw her picture I was taken by the sweetness of the expression on her face. I can imagine her now, with her sweet smile, resting from her labors and enjoying her heavenly home.

Monday, March 03, 2008

Sunshine today

I took Qavah for her dental appointment today. She left the office looking like the winner of a game show again. For sitting still and winning everyone with her beautiful smile, she received a bracelet, toy boat, spinning toy that makes little sparks when you spin it, a new toothbrush, and a small duck that yells "Aflac" when it is squeezed. It's almost bath time and she intends to check out her toy boat in tonight's bath water. She was delighted with the visit today. When she goes back to have two cavities filled next week I'm hoping she'll remember the dentist can be fun!

Kathryn had a slow day. After a lovely weekend and a donut last Friday night she is back in bed with pancreas pain. She knows that the pain means an overgrowth of bacteria and has to increase her Xifaxin, but by the time the pain begins it takes awhile to turn things around. The strong pancreatic pain started after dinner tonight. Although she has eaten light, it seems her pancreas is taxed by the slightest thing. I do hope and pray things turn around quickly and that tomorrow will be better.

After Qavah has had her story in the rocking chair, music, good night kisses, prayers, and her blankets tucked in just right, I say,"See you in the morning when the sunshine comes." Being a little girl with a great memory for details she pops out of bed in the morning and runs to the window to see if the sunshine has come. This morning I woke up to her jumping up and down at the hallway window in a cheerful voice saying, "It's here, the sunshine is here!" It puts sunshine straight into my soul to see her joy. I'm so thankful for her happy heart and thankful for the way it makes mine feel.

Sunday, March 02, 2008

Time to Write

I don't know how it is that at the worst of times I have been able to post to let you know how things were going with Kathryn. Now that her situation has improved dramatically over the past week, I am having so much fun and excitement there is no time to write. It is late, so I'll be brief. The Lord has given us exceedingly beyond what we ever asked for. Kathryn has been nearly pain free for more than a week and her face is calm and radiant. The progress she has made on her senior paper is remarkable and we were all able to go to church today. I have been humming a hymn that has been rising up in me all day. My hope is that you will feel the mighty power of God in your hardships. Drawing on His strength is the only way we have been able to endure the pressure.

I sing the mighty power of God that made the mountains rise;
That spread the flowing seas abroad, and built the lofty skies.
I sing the wisdom that ordained the sun to rule the day;
The moon shines full at His command, and all the stars obey.

I sing the goodness of the Lord, that filled the earth with food;
He formed the creatures with His Word, and then pronounced them good.
Lord how Thy wonders are displayed, wherever I turn my eye:
If I survey the ground I tread, or gaze upon the sky!

There's not a plant or flower below, but makes Thy glories known;
And clouds arise, and tempests blow, by order from Thy throne;
While all that borrows life from Thee is ever in Thy care,
And everywhere that man can be, Thou, God, art present there.