Thursday, February 28, 2008

"I'm happy Mama!"

We have had some marvelous times the past several days. I think it is remarkable how Kathryn's health is stabilizing and all the credit and glory goes to her Creator for training us and telling us what to do next. I remember reading about the treatments available for her when she was diagnosed with HPS and I said, "we'll try everything else before using those drastic measures!" We tried everything else, and now Remicade, Methotrexate, Xifaxin, Viamin B complex, Folic Acid, Nexium, a touch of Prednisone, and electrolytes have Kathryn in a holding pattern that has given her the hope of achieving some of her dreams. The "glue" that holds her together represents years of research by scientists, a lot of trial and error, doctors determined to find answers, and a Voice behind us saying, "This is the way, walk ye in it."

Kathryn and I went to a live production of The Diary of Anne Frank tonight. It was a special evening out for us. We met up with some friends and enjoyed the production very much. We used to do a lot of dreaming about doing things like that back when we spent so many nights at the hospital. We are now doing some of the things we talked about doing "when things get better." Since it was just the two of us out for the evening we had time to talk without spelling things out that we didn't want Qavah to hear. We talked about Qavah's life as it has unfolded over the last six months. She came to us speaking baby-talk gibberish and now speaks clearly and says everything she wants us to know. Around five-fifteen every day she watches for Paul's car to turn into the driveway from the upstairs window. Then she proclaims his arrival loud enough for all to hear, saying, "The king is home!"

When we got home tonight Paul had Qavah ready for bed and she was sipping a cup of decaf coffee while she waited for us. Her cello arrived today and Paul had kept it a secret from her until we got home tonight. We got the camera ready and Qavah delighted us with an impromptu concert. She even figured out that putting her left hand on the fingerboard changed the note. Paul promised her a cello lesson tomorrow evening. While he was packing it away in the case she scrambled up into my arms and said, "I'm happy Mama!" These are such good times and I'm tucking them all away in my heart!


Monday, February 25, 2008

Dreams in the Making

Today I had several things to do for Qavah so I took her with me and left Kathryn home to work on her thesis. I prayed for her success several times today. I feel like my prayers are very important now since she has battled so hard for this dream to become a reality. I don't want to let anything stand in her way. We are praying her through the obstacles. When we met up with each other in the late afternoon she said with a grin, "I finished seven pages today!" That made my heart soar! I was so happy for her.

At the beginning of this semester she had such a strong feeling that this would be her year to see her dreams come true, that she started asking for a particular graduation gift. She asked for a harp. Paul and I wanted to give her that dream but didn't know how we would manage it. Mom and Dad spoke with us a few weeks ago about her dream and their ability to make it come true and asked if they could make her a harp for graduation. She has wanted one ever since Whitney played for her at the hospital. Mom and Dad came this weekend to attend a harp concert and told her they were making one for her. They even had pictures of it. With a beautiful harp handmade by her Grandparents waiting at the finish line, I'm sure her motivation to finish is there. I laughingly told her to remember that there is an important diploma at the end of the rainbow and not just the harp.

Mom and Dad have encouraged all their children in music and paid for all five of them to receive music lessons on various instruments. The lessons were like a seed planted in fertile soil. Now when their children and grandchildren get together the instruments come out, toes start tapping, and the joy of music fills the house. What a wonderful gift they gave their children. Their children grew up to bless their own children with music lessons. We have memories of standing around the piano at their house with our hymn books on Thanksgiving and everyone could either sing or play an instrument. I hope those are times our children will remember with a smile, and they will carry on the tradition of giving their children the gift of music. We appreciate Mom and Dad for making music a part of our lives, but even more than that we appreciate the faith they have in the finished work of Jesus, and one day we will share the music of heaven together.




Sunday, February 24, 2008

Sunday Night

There are many reasons to rejoice tonight! It has been a weekend filled with many blessings. Now, we are turning our thoughts to the work week ahead. There are several tasks all of us have to accomplish before tomorrow morning. So, this is the update for tonight. However, to read a more complete summary of the weekend and view pictures, visit Kathryn's Keepsakes (www.kathrynskeepsakes.com).

Thursday, February 21, 2008

A Normal Day

I woke Kathryn up this morning and she said she slept without pain all night. I am so happy I feel super-charged and want to celebrate. I'm thinking about renting a rug shampoo machine and getting in to some serious spring cleaning. I feel that energized!

Qavah's surgery site is looking great. The butterfly tape came off on the fifth day after surgery and her incision has healed nicely. I think that new skin glue and tape is wonderful for children. There is no need for stitch removal a week after surgery.

I am so thankful that this day is off to a normal start. If you've been a long-time blog reader, you know how we love a "normal" day. Whatever you do today, remember how grateful we are that you helped pray us through another hard time.

Qavah just came into the kitchen and got out two bowls and a bag of microwave popcorn from the cupboard. I asked her if she was planning on watching a movie and she said, "Yes, with you!" The carpet cleaning will have to wait. I'm going to watch Cinderella.

Tuesday, February 19, 2008

A Little Reality Reading

We woke up this morning after a full eight hours of sleep to bright sunshine. I have a sense that today is going to be a productive day. My "to do" list is ready and I am taking Qavah over to Jenn's for several hours. She is looking forward to playing with Annelise and I am looking forward to coming home to scrub floors. I have those little gray floating fluff balls everywhere and I'm hoping to find them all today and get rid of them.

I read a book yesterday about a couple in China building and expanding foster care homes to care for hard to place Chinese orphans. After reading of their heroic efforts to save one of the orphans who had been found in a field badly burned, I had my energy restored. When all of their efforts failed it was apparent that the Lord went before them, changed the scene, and battled for the health and safety of the little boy named Levi. The government of China, the Shriner's Hospital, and American Airlines, were compelled by the story of the abandoned baby, and all moved in record time to save him. Reading the account lifted my own flagging spirits.

Thank you for your continued prayers. We need that encouragement. In some ways dealing with HPS has gotten harder for Kathryn. I think the realization that the journey is just beginning is a hard reality. I whisper, "God have mercy on her," often. I know you do too. It helps me to read the accounts of miracles wrought in the lives of others. Levi's story has helped me get back up to continue the good fight because I was reminded that I am not alone.

To learn more about the ministry of John and Lisa Bentley log onto: harmonyoutreach.org

Monday, February 18, 2008

He Neither Slumbers nor Sleeps

This morning Kathryn and I were trying to remember how her digestion problems started last week. We tried to trace her problem back to food consumption and medicines and from what we can remember this latest pancreas attack and severe acid reflux started after a course of an anti-fungal treatment. Her body has been out of balance since before her Remicade treatment and her care has been labor intensive and round-the-clock. She developed a fever and chills on Friday night that taxed her adrenal system. I didn't post this weekend because I was simply overwhelmed with fatigue. On Sunday morning Paul and I were too tired to get out of bed to go to church.

Yesterday I reminded God in an angry prayer time how often I have felt spent and how hard I had worked to get Qavah's surgery scheduled. I said, "could you just give me a break here?" I don't know what came over me yesterday but "battle fatigue" describes it. Although I am amazed at how much my faith has grown, my faith does not exempt me from the feelings that accompany caring for someone with long-term challenges.

Yesterday Kathryn and I had a heart-to-heart talk about how frustrating HPS is . She was forthright about the feelings she has when she sees how exhausted we can get, but still wanted me to write candidly about it. There is a fair amount of guilt to be overcome by the one who suffers and a great amount of reassurance of love by the care-givers is needed. Daily we exchange encouraging words, but sometimes we struggle to believe the words we say. Yesterday I said, "Tomorrow will be better." Today it is better but many times it isn't.

Last night I had Qavah in my arms, rocking her to sleep. Her lullabies were playing and she fell asleep into the third song. I watched her sweet little face and kept rocking so the rest of the lullabies were sung for me. Here are the words to Even the Darkness is Light to Him from Michael Card's , Sleep Sound in Jesus. At the end of my hard day these words were manna to my hungry soul.

Even the darkness is light to Him
And night is as bright as the day
So you are safe though the light grows dim
For even the darkness is light to Him

The Father above does not slumber or sleep
He wakefully watches our ways
Then there's no reason for you to weep
For the Father above neither slumbers nor sleeps

So dry your eyes of angel blue
And trust the One Who died for you
Would not Jesus safely keep
The little ones He loves asleep?

Friday, February 15, 2008

Friday NIght

I'm anxious to hear about the Valentine get-together our church had tonight. I know there were probably a lot of laughs. We stayed home and enjoyed popcorn and a movie. Kathryn had a rough day and attributes that to the two days before Remicade when things were so bad. She just has to get over the drain from that so she slept most of the day. Other Remicade users have told of extreme tiredness right after a treatment but Kathryn was hoping she would not have the same reaction. She is doing better tonight.

Qavah and Annelise have ruled the house and had us laughing so hard we couldn't get our breath. They play so well together. Qavah had the idea to take some of her plastic bowls and use them for hats. Annelise thought that was a great idea too. Only the bowl she chose to put on her head was so big it came down over her entire head. It looked like the bowl had sprouted legs. We tried to convince her to use a different size bowl but she wanted the biggest. So she spent most of the evening following Qavah around with her "hat" over her head. She walked into walls, doors, and people. The more she crashed into things the more we laughed. The more we laughed the harder she tried to keep us laughing. It reminded me of the slap-stick comedy of Laurel and Hardy. Kids have a very high entertainment value. I recommend being entertained by them often, even if you have to "borrow" some.

Congratulations to our friends Jack and Linda and Jim and Lynda, who received new grandbabies this week. The joy continues. We've seen the pictures and we rejoice with you!

Thursday, February 14, 2008

Hallelujah Day

Kathryn and I were up most of Wednesday night. Her Remicade was badly needed. She spent most of the night with pancreas troubles and dry heaves. I fell asleep at four and got up with Qavah at six. Paul got Qavah ready for the surgery clinic and I worked on Kathryn's morning meds. She was able to get to sleep again so I left for the surgery, Paul left for work, and Paul Burton had the day off to stay with Kathryn until her Remicade treatment.

Qavah was so very brave for her surgery. She held out her arm for an IV and took it without complaint which sent all the nurses into accolades of praise. She beamed. We told her that since her port was coming out she would have to get used to IV's and be a big girl about it. She was put to sleep, had the surgery, woke up happy, had a snack, and we were on our way home before noon. She bounced back so fast we were all astounded. Qavah said, "Mama I'm so happy," about twenty times today. We have to watch for signs of infection now because her white cell count is still low, but Paul Burton is here to help us with that.

After we got home and had lunch it was time to take Kathryn across town to her appointment. That went very well. Halfway through the Remicade treatment Kathryn asked for snacks and drinks which the nursing staff provided today. There were pretty Valentine cupcakes and other fancy things to eat. Kathryn, who hadn't eaten since Tuesday joyfully ate all she could which threw off her blood sugar levels and by the time we got home she passed out several times. We loaded her up with protein and a warning. Next time she has a treatment she is to take her own balanced snacks!

Qavah is sleeping now. Kathryn is ready for bed and feeling so much better. Paul and I are about to exchange Valentines and get some rest. It was a wonderful day. God was kind to us in every way, and your prayers were answered in abundance. There was peace and joy surrounding this day and it was Valentine's Day, too. The cards Paul bought for the girls were very sweet. Kathryn memorized the poem inside her card and Qavah has been carrying hers around all afternoon. By their actions I see they know they are loved, and they are thankful for that. We have so many reasons to be happy tonight and we are.

Wednesday, February 13, 2008

Electricity!

We have lights, heat, and music, all being brought to us by American Electric Power. Wow, did we ever miss our electricity. I tried to flip on lights more than a dozen times while the power was out. And nothing happened! It was a blessing to be at Colin and Jenn's, and made the inconvenience of no electricity seem more like an adventure.

Kathryn started struggling with her Remicade lull during dinner last night. Her condition rapidly changed and she suffered most of the night. Her Remicade treatment has been moved up a day, so she is fasting until tomorrow afternoon and is coping knowing relief is on the way. Qavah also had a hard day. She slept a lot and was feverish. Her surgery has been moved up a day also. It is tomorrow morning at 7:30. I was happy for her to have an early-in-the-day appointment because she doesn't usually wake up hungry in the morning. By the time she can eat again, she'll be asking for French fries. Paul and I have reached a decision after a lot of prayer. We are not going to have Qavah's bone marrow biopsy tomorrow along with the port removal. We are anticipating that having the port out is going to improve her condition. If that doesn't prove to be true, then we will have the biopsy done.

I am grateful to feel so peaceful tonight. We've worked through so many unknowns and have come to a place of trust where the girls are concerned. We are committed to caring for them, and making them comfortable to the best of our ability and it gives us joy to do it. While Paul and I were boiling pans of water on the camp stove Monday morning to help the girls get ready to go to Colin and Jenn's, I had this thought, "we may have lost our electricity but we haven't lost our power." Thanks be to God Who empowers us to care for others.

Tuesday, February 12, 2008

Tuesday Morning

Good morning! We are still without power at home. Colin and Jenn are so gracious in letting us "camp out" at their house until everything is fixed. The power company is stating that power will be restored between Wednesday and Friday.

As of now, Qavah's surgery is scheduled for Friday morning, starting at 11:00 A.M. Mom and Qavah visited the doctor this morning for the pre-op visit. Qavah was put on another round of antibiotics in an effort to keep her as healthy as possible until the surgery takes place.

Today, Virginia is holding its presidential primary. Our voting location was changed due to the power outages. As always, we are praying for wisdom for those voting today. I will be going out later this afternoon with Mom to cast our votes. In the meantime, I am helping with Annelise and working on my senior paper. Yesterday, I was able to get three and a half pages written!

Monday, February 11, 2008

Monday Afternoon

Hello everyone! I am updating from Colin's and Jenn's home. We have no power, no water, and no phone service. The high winds in our area caused power outages all over the Roanoke Valley. As the power lines fell, the conditions were just right for brush fires. Several of them started Sunday afternoon and the winds quickly spread them. The Valley is now very smoky and hazy. We found out last night that our two kerosene heaters could not keep the house warm enough, so we are making other plans for tonight.

Yesterday, our family celebrated Qavah's baptism at church. The Lord blessed our day with good health, so everyone in our family attended the service. Even Granma and Granddaddy Campbell were able to visit for the day. Aunt Julie also surprised us by visiting our church, too. The entire service, including the Baptism, were filled with joyous and meaningful moments. Colin and Paul Burton sang a Fernando Ortega song related to adoption titled, "If You Were Mine," which I was able to sign for the congregation.

Due to the power outages, I will not be able to post pictures of the Baptism until our electricity returns. The power company said that might happen on Wednesday, but we are praying we'll get power back sooner than that. It has made for some fun adventures, as we are showing Qavah how to live "daily life" without power!

I am staying at Jenn's home today, so I can get some writing accomplished on my Senior paper. Mom is taking care of details at home and trying to get Qavah's port-removal surgery re-scheduled. We have a surgery time scheduled for this Friday, but we know it needs to come out as soon as possible. While Qavah has a joyous spirit, we know she is not feeling well. She cried for awhile during the night due to bone pain. We'll keep you posted, and in the meantime, we appreciate the prayers.

Saturday, February 09, 2008

Eye Drops

I think we hit a record last night for the least amount of sleep yet. Kathryn's electrolyte problems started around midnight and by four in the morning, I started massaging her legs and back because they were so sore from her tense muscles. Magnesium is a tricky electrolyte to balance because without it muscles get tense and toes curl under, but too much magnesium causes muscle weakness and causes the legs to feel like rubber bands. As I was working on Kathryn I saw a light turn on in the hallway. I saw little Qavah standing with her pacifier, tears streaming down her cheeks. Her legs were hurting. I woke Paul up and told him what was happening, so he got up with Qavah and held her in the recliner until she fell back to sleep. Kathryn and I heard the early birds chirping and watched the sky turn pink. What a night. In those early morning hours we prayed and enjoyed the presence of the Lord in such a profound way. He sees all these things and there are countless times I have felt His nearness as close as a whisper.

Paul and I continue to be given strength upon strength for this ministry to our daughters. We discovered an eye lubricant that not only takes the red out of our sleepy eyes, it helps us look like we've had a full night of sleep. We are getting around well today preparing for Qavah's baptism tomorrow. The girls had a slow start this morning but they both are feeling better. We look forward to sundown and a day of Sabbath rest.

Holy, Holy, Holy,
Lord God almighty,
Early in the morning
Our song shall rise to thee.

Only thou are Holy,
Merciful and mighty,
God in three Persons,
Blessed trinity

Thursday, February 07, 2008

Wednesday

Qavah's transfusion was a little rough yesterday. Her veins were hard to find so it took three attempts to get the IV started. She was patient but cried softly until her IV was in. She was able to get her transfusion in the new wing of the hospital for pediatric oncology/hematology which opened on Monday. There is a miniature room outfitted with a kitchen set, table and chairs, and bright colored walls. The scale of the room and pretend kitchen was designed for three to six year olds. Once her IV was going, Qavah rode in a little red car from her room to the "kitchen." For the remainder of her transfusion time she busied herself with cooking projects. I love the way the pediatric clinic is run. Everything is designed to run smoothly. At the end of the transfusion and consultation with Qavah's doctor, the front desk called for the valet to bring my car to me. Call me a fanatic but I can't stop thanking people on occasions like that. I'm so grateful for the help, and grateful to God for the minds that He gives us to think of ways to meet the needs of others.

The hematologist has requested a bone marrow biopsy to be taken from Qavah's hip while she is asleep during surgery. She is looking for any evidence of cell destruction and production. All things considered, we are having good days and plenty of laughs. Sunday morning at Wellspring Presbyterian Church, Qavah will be baptized. Our service starts at ten and if you don't have other plans, please join us. We are praying for the girls' health so we can enjoy the experience together. Qavah is treasured, not just by us, but by her Heavenly Father and we want to dedicate her life to Him. She was alone without parental affection for the first seven months of her life in four different hospitals. It is hard for me to think of her without a loving parent to whisper hope to her and rock her. I wonder if the hospital staff could sense the numbers of angels surrounding her. Something special took place in Qavah's life during those months because more than any other child I've ever met, she exudes joy. My Bible study lesson for today is from Psalm 125. Perhaps He whispered these words to her Himself. "Those who trust in the Lord are as steady as Mt. Zion, unmoved by any circumstance. Just as the mountains surround and protect Jerusalem, so the Lord surrounds and protects His people."

Tuesday, February 05, 2008

Tuesday Afternoon

**Kathryn's Keepsakes has been updated. Click here (the blue text) to visit her website**

Kathryn's infection and subsequent use of antibiotics put her body in a state of unrest. Her cells do not look favorably upon antibiotics! As a result she has had an abundance of abdominal pain, cramping, and reflux. Her body now seems to need an anti-fungal medication to strike a balance. All of this is new territory for us. There isn't a number to call to ask what her cells might do with a simple round of antibiotics, so we research and pray for wisdom. Kathryn was unable to go to her college today. Since she was looking forward to a visit with her instructor she was disappointed to have to cancel her plans. Even with this new hurdle she has steadily worked on her research paper when she feels good and is making progress.

Qavah is needing another transfusion and it is set up for tomorrow morning. I am feeling stretched thin by the process of trying to get her port removed. I suppose everyone thinks their problem is an emergency so we have to wait like everyone else. It is hard to see Qavah struggle, know that things can change, and have to wait on the system for something to happen.

Equally important to the medical issues is playtime. Qavah has her rice box in the kitchen filled with dry white rice. With her imagination and a few utensils she can busy herself for hours without a care in the world. Kathryn still gets up and puts on lipstick no matter how bad things are. My girls are teaching me that smiling, playing, and wearing lipstick can help keep things in perspective.

Sunday, February 03, 2008

Sunday Night

I have been praying for a particular family with a young son who has not been able to eat. The next step in keeping him alive was a feeding tube through the nose; not an easy procedure. The situation was serious and he was losing a lot of weight. I was able to get connected to that family through email and just received news tonight that their son is doing well. His situation has turned around and he is eating normally! I haven't looked at any of the Super Bowl scores yet and the game is probably over by now. But I have to tell you that the news that a young boy named Richie is eating and digesting food made this a Super Bowl Sunday for me to remember! One thing about prayer that always makes me feel like cheering, jumping, and shouting, is that it is God Who receives our gratitude. Imagine how that thrills His heart! And while I'm cheering Him I want to thank Him for the rest we enjoyed this Sabbath Day. The girls are both struggling with their health issues, but that is all in God's hands. A day of rest is just what we all needed.

Friday, February 01, 2008

Icy Outside, Warm Inside

We can look out our windows to a winter wonderland. We can also see that our chain saw is going to get a lot of use. Whole branches gave way under the weight of the glistening ice. Inside we are watching videos. Kathryn, Qavah, and I just finished watching Angelina Ballerina. We can all fit on the couch with one blanket stretched across all of us. It is a nice warm activity for two convalescing girls. Kathryn's antibiotics are clearing up an infection, and so far other than sleepiness her platelets seem to be handling the antibiotic without any trouble.

Qavah's immunologist just called with the results of her labs taken in Charlottesville. Her immune system appears to be functioning well! The next course of treatment will be up to her hematologist. That means her immunologist has determined that her immune system can be suppressed by any number of drugs available now. One of them may stop the destruction of red cells. In the meantime we will still be taking out her port and transfusing her monthly until a drug treatment begins to turn things around. We have faith that it will.

If you have a four-year-old you may remember using the spelling method to communicate things to your husband or wife that you don't want your children to hear. Lately we have said things like, "Pack extra toys in the diaper bag, Qavah g-o-e-s f-o-r b-l-o-o-d-w-o-r-k t-o-m-o-r-r-o-w. Or, d-o-n-'t g-i-v-e h-e-r a-n-y-m-o-r-e c-o-o-k-i-e-s. We must be doing enough of that lately that Qavah has picked up on that. Paul and I took her out for a little while last night so we could get a few groceries. After shopping and buckling her back in her car seat she exclaimed, "Time to go home e-x-p-y!" Paul and I burst out laughing. What fun.