What's Next? Rest!

Qavah and I got to North Carolina without any trouble. I had packed enough clothing to stay for a week. Once we arrived to her appointment, Qavah was taken to an area where she could play and work on crafts. Then the doctor spoke with me in another room about the long-term picture for Qavah. Now that the genetic testing lab wrote "appears to be Diamond Blackfan Anemia" in Qavah's report, the picture for her care has changed. The doctor explained to me that her previous tests showed bone morrow failure and because that test (taken at 10 months of age) indicated failure, that was also one of the reasons she needed transfusions. It is not simply a matter of her red cells being destroyed that transfusions are necessary. He further explained that bone morrow failure makes it impossible for him to use immunosuppressants because it would futher damage her bone morrow. So on the day we thought would be the start of a treatment plan, I had to sit and listen to the things that will happen to Qavah in the future. It was very very hard not to cry, but I managed to keep calm and ask as many questions as I could think of. I had a giant lump in my throat when I left the office and took Qavah to one of my favorite parks a mile from the hospital. Before driving back to Roanoke we went to Reynolda Gardens, where she played tag with me in the rose garden. We ran through the mazes together and I walked her down to the flower gardens where daffodils and purple pansies laughed back at us in the sunshine. I picked her up and kissed her before I put her in the car and she said, "We had a very happy day today! Happy, happy, me!"

Qavah has no concern about her future. She laughs and plays without a thought or worry for what is to come. I have decided to adopt that philosophy myself. Qavah and I have booked a flight to Florida next Tuesday where, Lord willing, we will stay in St. Petersburg and visit the white sandy beach of Fort De Soto together. It makes me smile to think of her digging in the sand and collecting sea shells. Aunt Lil and Uncle Tony have invited us to stay there with them. It is time for a rest from all the medical challenges, and time to enjoy the beauty of the gulf coast. God has given us peace and we still pray believing He is going to show us His power in bringing greater healing to Qavah.

Jesus said, "Come unto me all ye who are weary and heavy laden, and I will give you rest." (Matthew 21:11) We have such a perfect savior, One Who understands our human condition and promised to carry our burdens.

Father-like He tends and spares us,
Well our feeble frame He knows.
In His hand He gently bears us,
Rescues us from all our foes.
Alleluia, alleluia, widely yet His mercy flows.

Computer Problems Solved

Last week I noticed that my computer was taking forever to process simple commands. I could not download any articles without having to wait a long time. In some cases I would fix a cup of tea while I waited for the computer to pull up the weather forecast. Slowly, the wireless router in our house started to go bad. I hardly noticed the delays at first. But over time I found that doing the simplest things became a time consuming ordeal. Over the weekend, Paul found some wiring and hard-wired my computer to our cable service. I now have anything I want right at my fingertips. I've almost had whiplash this afternoon as I speed around the internet looking up phone numbers and preparing for the trip to North Carolina tomorrow. I'm also amazed at how long it took me to get to the point of noticing I had a problem.

Lord, make me quick to call on you for needed change in my life. I'd like to know that I am hard-wired into your system of handling challenges so that I can work through difficulties without wasting precious time. In Jesus Name I pray. Amen!

Medication Malfunction

Yesterday around three o'clock Kathryn started feeling really bad. Her abdominal pain had increased beyond the normal symptoms of an intestinal virus. She called her doctor, who wanted to see her right away. She could barely make it out of bed so she took more Prednisone and together we managed to get there. While the urine test showed no sign of infection, he did say one thing that triggered a thought in my mind. He said that inflammation in the abdominal area could be a result of the virus itself and causing her to feel the pain. When he said "inflammation" I asked Kathryn if she had diarrhea the days that she took methotrexate, which controls inflammation. Kathryn told me that she had, and it was then I realized that the medications keeping her body stable had gone right through her. We got home and she took her meds a second time. This morning she is doing so much better.

The intestinal flu or viruses can throw everything off when oral medications are not properly absorbed. We know that now. It makes sense. We just have to remember that in order to avoid this in the future. Although Kathryn has struggled with so many health issues in the past, this is actually the first time she has had to deal with a normal virus. That is a reason to be thankful. In the future we will know what to do. All of this has happened at the end of her work week so she has the weekend to stabilize. She is beginning to think about going back to work on Monday. We are very thankful for everything we are learning.

Keeping a Calendar

My calendar was empty for today. I looked at it before going to bed last night with relief and thought that a free day without any appointments was just what I needed. Before going to sleep I made a plan to finish some laundry today and begin deep cleaning the house so that I could leave it in order next Tuesday. While Qavah and I are in North Carolina I want to have a clean home and food in the refrigerator back in Roanoke.

Plans can change in a hurry, can't they? Early this morning I had just answered a phone call from Kathryn telling me in a faint voice that something was wrong and that she needed to leave work, when the hospital called asking me to bring Qavah for her transfusion today. In a rare turn of events, Paul Burton had been asked to work at the hospital later than usual today and he wasn't needed until 3 o'clock. He stayed with Kathryn giving her electrolytes and Prednisone as needed. I returned home with Qavah before dinner and found Kathryn looking much better. It all worked out perfectly and here at the close of the day, Kathryn's fever has broken, Qavah's blood count is way up in the normal range, and I am just now beginning the list I had started on this morning. The washing machine and dryer are humming and I am about to sit down with a cup of coffee and catch up with Paul.

Somewhere along the way I have laid down my idol called "The Calendar" and let the Lord determine my steps. My heart is light and thankful tonight because of it. My day didn't go as planned and yet everything is perfectly fine at the Campbell home tonight.

A man makes his plans but the Lord determines his steps. Proverbs 16:9

Busy Tuesday?

It was Paul's first day back to work after a three day weekend so naturally it has seemed like Monday all day. I have been confused several times today about the day of the week and hoped it wasn't another indication that old age is setting in. It was a good day in many ways.

Kathryn saw the Oral Surgeon today and was cleared for another six months but he is watching several places where the roots of her teeth are exposed. A great blessing has happened in this situation. Kathryn's insurance will not cover dental problems unless she needs surgery. So all these visits would be costly and overwhelming if not for the fact that the Surgeon told her that he will not be charging her for his services. He gave her a fluoride treatment today to protect the exposed roots and dropped her records at the front desk saying, "No charge." I have cried about it already. But it was a good cry. It overwhelms me sometimes when things like this happen in a world where bad news is the theme of most network news.

We are so very thankful tonight for all that God has done for us. At times we feel washed in joy because the girls are doing so well, and we are taking advantage of every good day we have. I wish I had been this grateful for everything when things were easy. Suffering is such a good teacher.

Sabbath Day Surprise!

We had a full weekend. Qavah seemed better by Saturday morning so we took her out to her swing and she spent some time outdoors. Her fever has not returned. I have an appointment for her transfusion this coming week. Tonight as she was getting ready for bed I noticed that she was working on her loose tooth with her tongue. She suddenly said, "Oh, it is coming out!" Sure enough I took the tissue and dried off the tooth and it came out of her mouth stuck to the tissue without any tugging or trauma. She squealed with delight and shouted for everyone to come and take a look. It is such a sweet thing to see her joy over this event.

We have records for Qavah from four different hospitals. Sometimes she was admitted to those hospitals in critical condition. I wish I could find a way to thank every one of her care givers and tell them she lived to reach this milestone. God has so much more in store for her. We will reap the blessings as we watch the plan for her life to unfold. We are so blessed.

Quick Change

Qavah has a high fever tonight. She had been telling me today that she was cold and wanted me to buy her a little coat when we were out shopping. I thought that was strange since she was already bundled up. It wasn't until we went to the pharmacy when she asked me to carry her that I discovered she was really hot. I brought her home and made her comfortable. She experiences fevers from time to time and they tend to reduce her red cell count very quickly. We're keeping an eye on it.

In other news Paul noticed that Qavah's two small teeth on the bottom are quite loose. He told her about her baby teeth coming out to make room for the bigger teeth and she didn't seem to like that idea very much. Once Kathryn started talking about the tooth fairy and money being left under her pillow, she changed her mind. Instantly my mind traveled back in time to Kathryn's experience with the tooth fairy. She woke up to find Paul in the process of leaving a dollar under her pillow. Unable to see very well she asked me the following morning if Daddy had a special outfit for being the tooth fairy. I was perplexed by that and asked, "What kind of outfit?" She replied, "Well, like pink tights." I still burst out laughing over that one.

Medical Update

Kathryn has been doing well. She is stable on all her medications although for some unknown reason she has a day or two during the month that things are not quite balanced with her digestive tract. She now has a very good sense about her pancreas being overworked and knows to stop eating when it isn't keeping up. The management of her care is largely in her hands now, and she has had a good winter thus far. We have stayed away from large gatherings and use hand-washing and germicide frequently. She has to play her harp with band-aids on her fingers because of some cuts that keep opening up on her finger tips but other than that she has been free to enjoy her work. She is very thankful and lives with an attitude of gratitude for every good day.

Qavah has been tired lately and is able to express that to me during the day. I attribute the tiredness to her anemia, but she is also growing very fast now. She is finally registering on the height chart. Our visit to Brenner's Childrens' Hospital is scheduled for February 24. Qavah will need one more transfusion here in Roanoke before then. She is very peaceful until her Daddy's car turns into the driveway around dinnertime. Then she lets out a shriek of joy that gets the dog barking. We enjoy these good days to the fullest.

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. Ps 16:11

My Daddy

I noticed that Qavah has been asking a question that is an indication to me that she has been given the heart to please her Daddy. Our conversations went like this today:

"I'm so happy that you like to help me in the kitchen, Qavah!"
Qavah responded to my praise with hopeful expectation, "Are you going to tell my Daddy?"

"Qavah thank you for picking up your toys."
"Are you going to tell my Daddy?" She asked with a satisfied grin.

"Qavah, Daddy will be so happy that you made a Q and a V with your cheerios!"
"Are you going to tell him, Mommy?"

Something in my heart leaps for joy when she asks that. I hope it is a preview of what is to come when she begins to trust her Heavenly Father, and knows the joy of having His approval. Her reward will be great. She will have peace, contentment, and dignity. That is what I have in my Abba Father. I thank Him for His goodness to me today.

Lovely Days

Qavah and Kathryn had a healthy weekend. We had two days together with sunshine and temperatures reminding us that spring is just a few weeks away. In everything I did this weekend, I felt God's pleasure. His love for us is so rich and full. I saw it in the way Qavah was able to run all the way to the swings herself and didn't ask to be carried. I saw it in the sparkle in Kathryn's eye as she took some time to play this weekend. God's goodness is following us all the days of our lives. I'm more thankful in my heart than words can really express.

Details

Since the diagnosis we received yesterday, I have been getting things together to begin moving Qavah's medical care from Roanoke to North Carolina. Qavah can survive a long time on transfusions alone, but now that there is a diagnosis, there are medications that can be tried to put this disease into remission. We believe God has a special plan for Qavah, and we are privileged to be on the front row as His plan unfolds. We are grateful for all the offers of help, and for your prayers. I'll know more about our travel plans by the end of the week.

Qavah has been cheerful, playful, and happy all day. She just finished playing a game with her Daddy that involved a beach ball being thrown wildly around in the library. She couldn't catch the ball and it bounced off of her head instead. She declared with a giggle, "Okay, that's enough, the party's over!"

Genes

Staring down at the drawing of Qavah's third chromosome, Paul and I listened carefully to the the information the genetic doctor had for us. We could see before us a code. The code on paper looked like an elongated capsule with lines randomly drawn through it. Each line meant something. Each line had its job to do as Qavah was formed in her mother's womb. The chromosome study supports a diagnosis of Diamond-Blackfan Anemia, even though she does not have some of the other symptoms of Diamond-Blackfan. Paul and I have spent hundreds of hours researching this disease. We still want to believe that Qavah's red cell aplasia can be put into remission.

There are two words beside the description of Diamond-Blackfan Anemia in the medical journal that make this hard for us. They are "no cure." Yesterday when I wrote about the train tracks, I did have health challenges in mind. On the one track there is disorder, transfusions, and a little girl constantly struggling with anemia. On the other track there is a little girl who feels joy very deeply. She had no idea it had snowed last night. In complete surprise she was scooped up into our arms and carried out into the snow. Wrapped up in her pajamas, pink bathrobe, high pink boots, and winter coat, she played with her daddy in the snow in the dark of night. Her shrieks of joy could be heard a long way off. She stayed outside long enough to throw some snowballs and leave her footprints all over the driveway.

We now have to move on with the knowlege that we have gained. We are continuing to seek help for Qavah through Brenner's Children's hospital in North Carolina. While this bend in the tracks wasn't what we anticipated, we are moving forward. There are also two words written beside Qavah's name in the Hebrew dictionary. They are "hope; patience."

The Railroad Tracks

I read something about two years ago that a friend sent to me. My memory is fuzzy after two years, but I saw a picture yesterday that reminded me of the article. It was an article about the events of life. This man observed that he used to think life was made up of good events and bad events and that they only came at us one at a time. So for awhile he would feel free and satisfied, until the next bump in the road. Then anxiety and frustration set in until a positive event changed his outlook once again. But as he grew older he observed that life was more like parallel events, like train tracks that are laid side by side with enough distance between them to hold the train on course. On the one track there is a continual line of the positive encouraging things that hold a lot of joy for us, while the other track holds conflict, broken relationships, and frustrations. The tracks run side by side in a particular direction but both the positive and negative life experiences are there running alongside each other. Therefore life is never completely perfect, but neither is it completely bleak. We are not in control of what lies ahead or around the bend. We are in control of our attitude as we travel the miles.