Tuesday, June 29, 2010

We are Home

I'm updating this morning before taking Qavah to the hospital for a transfusion. I wanted to let our family in Michigan know that we arrived home safely and Kathryn was able to get an appointment for Remicade immediately. She is much better today, and most of the abdominal pain she was experiencing is gone. Qavah's CBC was 6.3 and we were able to schedule a transfusion after getting her Red Cross blood band yesterday. We had to hit the ground running but in a couple of hours Qavah will soon be feeling much better also. This evening we hope to sit down and review the pictures taken over the last week.

Although our trip was hard in some ways because of the health challenges that popped up toward the end of the trip, our vacation overall was delightful. We had time with brothers, sisters, parents, aunts, uncles, and cousins. Most of them met Qavah for the first time. We have some great memories and hope that we will be able to travel more in the future.

On the drive back from Michigan we had several prayer times for the family members who really need jobs, healing, and a special touch from God. In connecting with extended family again we could gather their prayer requests and do some praying for them. There are many reasons why God has placed us in a family and supporting each other with prayer is a good reason to be grateful. We are thankful to the many family members who told us, "We are praying." And most of all we are thankful that God's mercies are new every morning.

Thursday, June 24, 2010

Family

I am happy to report that our trip to Cincinnati was fruitful. The doctor there is supposed to be calling the pediatrician in Roanoke to direct Qavah's care. I will have to learn to give Qavah injections three times a week to increase her production of white cells. That should start helping her body to fight infection. We have now officially changed Qavah's daily care over to the doctors in Cincinnati who will direct her care at home.

Today is the first of three family reunions where Qavah will be introduced to much of our extended family. We are here in Frankenmuth Michigan enjoying the beauty of this German settlement. We are taking a lot of pictures because the flowers are breathtaking. There are many reasons why I am thankful today. Due to a slight problem with our original hotel room, we were given two rooms with a connecting door which gives us the use of two bathrooms. We also have a view of the river. The long green lawn ends at the riverfront where a riverboat travels by about six times a day.

The girls are feeling very well, and Paul Burton's flight got into Detroit yesterday so he is here with us as well. We are all getting the rest we need. The Bavarian Inn Lodge is an amazing place with several pools and an indoor Putt-Putt golf course. Qavah has been having a wonderful time and it makes us all smile to see her enjoying herself.

Thank you so much for your comments lately, dear friends. You have made my journey through this life so sweet. Sara, we were just girls when we met, and I find after all these years our friendship is still as sweet as ever. We're still just young girls at heart, trying to live in such a way that we bring glory to Our Father. We look forward to spending this day with family, but friends become our family over the years and in that sense, I wish you could all be here with us today!

Saturday, June 19, 2010

Plans For Next Week

Earlier this week I wondered if the fever Qavah had was a sign that we should not travel with her to Cincinnati or take her on the little family vacation we planned following the appointment. However, yesterday in the early morning hours, her fever broke and she has been getting out of bed for longer periods of time. We will be leaving this week as planned. This visit to Cincinnati Children's Hospital is an important one because we have been discussing the options laid out for us by the doctors at NIH.

Qavah's system is overloaded with iron because of the red cell transfusions that keep her alive. She has been using a drug to pull some of the iron out of her system, but it isn't as effective as it needs to be. Therefore her organs have become saturated with iron and are not functioning well. We are going to Cincinnati to try to work out better dosing and scheduling for administering the drug to help regulate her iron. In addition, because of the suggestions of the doctors at NIH, we are going to begin the discussion about a stem cell transplant and the possibility of finding a donor for her. When we were first approached about it, we put it out of our minds because it seemed so drastic. But it seems now that it may be the lifeline to a longer and better life for her.

There are times that Paul and I have fasted and prayed for answers concerning the health and care of the girls. This is another occasion to seek Him with our whole heart. What we have been praying for in this situation is that a perfect donor match will be found. If that is the case we will feel more confident that this is the right thing to do. It has been suggested to us that finding a donor for her with her mixed heritage will be like finding a needle in a haystack. We know that that is not too difficult for our Great God. Above all we want to keep trusting God for the path He is setting before us.

My next post will be from Cincinnati. We have our bases covered here at home and someone to puppy-sit. The insurance matters are settled concerning this trip and Paul is at this minute planning our route. God bless all of you who follow this blog and pray for us. To Aunt Lil, Martha, and Betty, thank you for reassuring us that God is using this blog to bless your walk with Him.

Wednesday, June 16, 2010

Better Day

Qavah is doing much better. She stayed in bed all morning and her fever stayed at 102 until her bath. I soaked her and gave her Tylenol and suddenly she seemed to start coming back to life. By this afternoon she was up and playing with a normal temperature. When I took her back to her appointment this afternoon, the doctor seemed very pleased with the way the Rocephin is working, but gave Qavah another prescription for an oral antibiotic that we should continue to use until we get to Cincinnati. She still has a cough but her lungs are clear. The change is so amazing that I have to thank God for her doctor, the antibiotics, and the "still small voice" that nagged me until I made the appointment yesterday. I know without a doubt that prayer changed things. Thank you for praying for Qavah. It's very pleasing to see the sparkle back in her eyes.

Tuesday, June 15, 2010

Heart-Snapshots

After I am away for a few days or more, I find that it takes another few days to catch up once I am home. The unpacking and laundry is finished but just about the time I thought I was on track to meet some deadlines Qavah started looking sick. She has a high fever and I took her to the doctor this afternoon. She has some congestion in her bronchial tubes but her lungs are clear. The biggest problem is her white cell count. It is very low (1.3) so the pediatrician decided to treat her with a round of Rocephin this afternoon and asked me to bring Qavah back tomorrow. She has no strength this evening and wants nothing to eat. I prayed with a friend this evening over the phone and feel settled in my heart that this is just another speed bump for Qavah. We are scheduled to take her back to Cincinnati next week to the Bone Marrow Failure Clinic.

We are thrilled with Qavah's progress on other levels. She signed her name by herself this week and earned herself a DVD that she has been wanting for a year and a half. Paul told her, "When you write your name all by yourself, you can have The Little Mermaid." She earned it fair and square. She also took communion in church for the first time this past Sunday. I looked at her kneeling down beside me at the altar patiently holding out her hands for the bread. It was a precious sight. She took it very seriously, and completely understands why we celebrate communion. I took a heart-snapshot of the scene.

The day we were to leave the Children's Inn I sat down to talk to one of the parents I had met. We met as a result of our little daughters. The girls met each other once and each time they saw each other after that they held each other and laughed. The little girl is dying of a rare disease and nothing the researchers at NIH have tried is helping her thus far. She is a beautiful little girl. I talked to her mommy about the unusual joy I saw in her daughter and she thanked me for noticing. Then she said, "My family is so distraught over this situation that they don't come around because they can not bear the sorrow of it." She continued, "My family asked me how I can endure this and I told them that I celebrate each new day we have." "But what if you don't have tomorrow?" someone asked. "Then I will celebrate that I had yesterday," she replied. That's what taking heart-snapshots is all about. It's a way of celebrating the moments we have been given.

Thursday, June 10, 2010

Someone To Follow

Qavah and I went into the kitchen at the Children's Inn on Tuesday night to warm up some food that I brought from home. Qavah got to the kitchen first and rounded the corner to find some women cooking together. I heard her declare, "Mama, there is a brown lady cooking here and we match!" My face turned red as I rounded the corner and came face to face with Ann. She looked at me and declared, "You have a white Mama!" I apologized and explained that Qavah notices the difference. Ann stooped down to look into Qavah's eyes and said, "Come and meet my two little boys. They are white!" She looked at me with a twinkle in her eye and we both reached out to embrace. Ann said, "Isn't it great to be a Mama?" I knew exactly what she meant. Color is something we look beyond as we meet the daily needs of our children.

After the initial meeting, Qavah spent the evening playing with Ann's two boys. They were polite and thoughtful as they showed Qavah how to play some computer games. One of Ann's sons had a stem cell transplant last year and is now doing very well. I told Ann that we have been asked to consider a transplant for Qavah but didn't know what to think of it. In the process of a transplant, blood cells are killed off by chemotherapy and new donor stem cells are introduced to the body. Paul and I have seen some children in the process of transplantation and it is very hard to witness the suffering. As I talked to Ann it became clear that our meeting wasn't by chance. She had a strong faith that has carried her family through a tough journey. Ann gave me her personal copy of a little book she has relied on heavily. It is filled with Bible verses that focus on healing and she told me to teach them to Qavah.

Ann was just one of several women cooking up tacos for the evening meal. We were invited to join them at the table. All the Mamas and their children, twelve of us in all, sat munching tacos as we shared our stories of faith. The evening ended with Ann praying over Qavah and anointing her with oil. I found sisters on this particular trip; sisters who have walked by faith and not by sight. They were willing to reach out to me and lead me, and I am willing to follow. This particular trip to NIH was less about Qavah's tests and more about building our spiritual strength for the days to come.



Wednesday, June 09, 2010

Home Today

Qavah and I drove in late this afternoon and I am actually too tired to say much at this time. However, Qavah was brave this week and prayers were answered. We will know a lot more in a few weeks when all of her tests return and a report is sent to us. Our final meeting with the geneticist this morning was very valuable and I'll want to share more about that as well when I get some rest.

I met some precious women on this trip. Women who have been given a very difficult task, and I was humbled as I watched them care for their children. We found each other by God's grace and prayed together last night at the Inn. We were gathered around a table from different states, cultures, and ethnic groups but we had one thing in common. We were all trusting God for a miracle so we bowed our heads and prayed together. There is something very holy about the cry of a mother's heart. We wept for joy when we were finished and said good night.

Saturday, June 05, 2010

Back to NIH

I have been preparing for our trip tomorrow morning trying to cover all my bases. I am leaving meals and snacks behind for Kathryn and Paul, and have most everything ready to go. I have my entrance badges and appointment schedule in my binder marked NIH. However, I always have a nagging feeling that I am forgetting something just before I leave the house. The last time I went to NIH it was right after I had surgery and I hadn't put all of my jewelry back on. During surgery I wasn't allowed to wear a wedding ring. I was nearly to NIH and thought, "I can't live apart from Paul all week and have no wedding ring!" I told Paul that it was really very important to me to have a ring. He was driving at the time and made a quick decision to drop into a Walmart and found a ring for four dollars. It lasted to the end of the week and cracked in half when I tried to open a bottle of apple juice. Paul arrived to pick me up bringing my real wedding ring with him.

If I have forgotten anything, I can always shop for it. There is a shopping center on nearly every corner. What I am remembering to take with me is a very special little girl and hope in my heart for a treatment plan.

Tuesday, June 01, 2010

Back to Work

We had several things on our minds over the weekend and did a lot of praying as a family. A friend of mine commented recently that it seems so many families are faced with some great difficulties lately, and I agreed. We had our prayer list for ourselves and others and went to God with it. Prayer is a way of releasing those concerns to God and continuing on with life, knowing He is in control.

Today I had an eye exam and concluded that I need to take better care of my eyes. I really like my eye doctor, so it was good to see her again. In the remainder of this week I need to have my tires rotated, oil changed, and get prepared for another trip to NIH. Our day tomorrow includes two doctor appointments for Kathryn. I am ready to get those things taken care of but I'm still feeling thankful for the quiet times I had this weekend.

Qavah was sitting on the sofa this afternoon and said, "Mommy, I think my tooth just disappeared." I went over to get a closer look at her and asked her to smile. Sure enough, she had lost her upper front tooth and it has left a fun little space that amuses her. "Qavah, where is that tooth?" I asked. She thought about it a minute and replied, "I think I swallowed it!" A minute later she asked if the tooth fairy would leave a dollar if the tooth wasn't under her pillow. With a twinkle in my eye I told her that she might wake up in the morning with a dollar bill rolled up and stuck in the space where the tooth had been. After getting a mental picture of that, she fell to the floor laughing. When she got her breath and stood up she said, "That was a good one, Mama!" I love that it takes very little to make a six-year-old laugh like that.