Thursday, May 31, 2012

Firsts

Since we left Roanoke on May twelfth I have learned how to use front loader washing machines, use a different microwave, coffee pot, heating and air conditioning system, and where to take our trash on the twelfth floor.  I've learned the hospital routine and when doctors make their rounds.  I've learned how to scan and use entry keys to different parts of the hospital, and where to go in the hospital for snacks, food, and coffee.  

In taking care of Qavah, we have had to learn to feed her using the bone marrow transplant diet, how to bathe her to keep her central lines from getting wet, and how to take her to the bathroom with an IV pole attached to her at all times.  Throw in Qavah's mysterious fevers and and night sweats, and changing her bedding and pajamas two or three times a night, and I had a new first!  I went to bed last night for what I thought would be a short nap after dinner and slept for thirteen hours.  Thank the Lord that Paul is back in Pittsburgh.  I guess I needed that nap.

Wednesday, May 30, 2012

Speed Bump

Qavah's fevers continued today.  She'll have a ct scan tomorrow, looking for infection.  The doctors are checking everything, so please pray for them.  A similar update has been posted on Qavah's CaringBridge website.  Thank you for your prayers and words of encouragement.  They are such a blessing!

Tuesday, May 29, 2012

Send in Your helpers

Although I am outgoing, and didn't think I would have any trouble relating to the new people I would be meeting, I left home praying, "Lord, when we are in Pittsburgh, send your people our way."  Upon arrival, we met a group of Christians from Calvary Chapel at the Ronald McDonald House.  They were feeding the families here as they usually do one Sunday night a month.  From that initial meeting came a family wanting to come back to the hospital to pray over Qavah.  The hospital chaplin also paid us another visit today.  He encouraged us in our walk of faith.

They are everywhere; the King's kids. We are helping one another on our journeys.  We have our quirks, we have our troubles, but we also know the Lord of all creation in a way that is unique.  Our acceptance of God's Son as our Messiah gives us a unique relationship with God; one that is personal and intimate.  We can call out to Him in times of fear, and find strength.  We can bow our knee to Him as the creator of everything, and also stand in silent awe of Him.  We are united in Jesus our Messiah, Who reconciled us to God the Father for all eternity.

New rules and regulations set forth by a godless government, or the abolishment of the Ten Commandments in our schools, can ever stop the Christians in this world from declaring the Glory of the Lord through our lives.  Because He is our strength and our song.  He is Emannuel, God with us.  Therefore, we continue on here in Pittsburgh, looking forward to those He will send our way, and we intend to be blessed and to be a blessing.  We are thankful for the love of our brothers and sisters in the family of God.  I wouldn't want to make this journey alone.  Thank you friends, for following this blog, and praying for us.  It means so much to read your encouraging comments.  Especially on the tough days.  God sends us messages of hope through you. 

Monday, May 28, 2012

Time to Talk and Listen

This afternoon I have been sitting on the sofa in Qavah's room rubbing her feet.  It is something she likes, it comforts her, and it's easy to do. There is one thing about being isolated in this room with Qavah.  I am finding her company to be delightful.  As I have been sitting with her, and not busying myself with chores around the house, she has talked to me about her desire to learn to cook when we get home.  During our conversation it seemed as though Qavah had grown up a few years in a short time frame.  I have no doubt that we are both growing up in many ways as we wait for the Lord to do more than we could ask or think, right in this very room.

Saturday, May 26, 2012

Emotional Roller Coasters

Paul and I have now joined the ranks of parents who eagerly await the doctors making their morning rounds.  They carry a folded sheet of paper that they usually have in their hand, or a shirt pocket.  And on that sheet are the morning "counts."  After an early morning blood draw, the samples are sent to the lab to measure progress in the blood supply, and the results are sent to the doctors.  The progress I speak of is either for the destruction of unwanted cells, or the building up of healthy cells.  Either way, we wait for the numbers to be announced during morning rounds, hoping for the results to show a positive trend.

I have made a decision with my head not to get on an emotional roller coaster each morning after results are read.  Emotional roller coasters are an energy zapper for me.  We were told that there will be days that try the soul, and we were told that the process is long.  I asked God this morning for a stronger resolve to remain steadfast in faith. Numbers on a piece of paper are no match for God's power and provision.  We are praying each day for the Lord's will to be done on earth as it is in heaven concerning Qavah. This morning we are resting in Him.

 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  Phillipians 4:6


(Today's post written in Memory of Miss Jackie Burk)

Thursday, May 24, 2012

Precious in His Sight

Qavah's room on the ninth floor looks straight down to the Healing Garden patio on the sixth floor. We can see little children tethered to IV poles as they play with the Child Life Specialists out in the sunshine.  They are making kites down there, planting pinwheels in the garden and watching them twirl, and having their faces painted in red, white, and blue.  It's a Memorial Day Party!  The children are playing, and running, with their parents trailing behind them pushing their IV poles so that they don't pull their central lines out.   From the view I have, I am looking down on their little bald heads amazed at their resilience.  I see, and am humbled by the grace God has given them to endure the very worst things without complaint.  

Fifteen minutes ago Qavah broke out in hives and started a dry cough.  Her BMT team was in the room instantly, measuring her heart and lung functions, and examining her.  She has just been given two more drugs to get her hives under control and she seems better already. Her chemotherapy treatment went very well today.  After two doses of Campath, her immune system is now gone.  She has been sitting on the little sofa in her room for the past seven hours waiting for all of the pumps to finish infusing her body with life-saving medications.  Paul just looked at me grinning because she is watching Annie and singing with a loud joyful voice, "The sun will come out tomorrow, bet your bottom dollar there'll be sun.  Just thinking about tomorrow clears away the cobwebs and the sorrow til there's none!"  And Lord willing it won't be long before Qavah is allowed to go down to the sixth floor and join the other over-comers playing in the sun. 

Thursday's Updates

3:59pm:
Qavah's going into the last hour of her Campath medicine.  When she recently developed a cough and hives, the doctors came running into her room!  She was given Benedryl and a low dose of IV steroids.  She's now doing better; it's actually remarkable how well Qavah has done today.  Our family gives the Lord all of the glory and praise!  Thank you for being so diligent in praying for our family.

Wednesday, May 23, 2012

Wednesday

10:40 AM
So far, so good!  Short update on CaringBridge concerning Qavah.  Another update later tonight.

6:30 PM
Qavah is finished with today's treatment.  Fever, chills, shaking, have all subsided.  She is curled up on the couch waiting to hear me read a story.  A BMT doctor, PA, and Qavah's nurse were available at all times and sat just outside of her room all day at the station.  When her monitors indicated a high heart rate they were in her room in a flash.  She is taking several drugs to keep her fever down overnight, so her medications are keeping her comfortable.  I'm so grateful for this day, and for your prayers.

Tuesday, May 22, 2012

Good Morning

I am sitting in Qavah's hospital room looking out of the large window on the ninth floor.  Dotted across the landscape are some very majestic church steeples.  I have never thought about visiting Pittsburgh before, but it is a place I would like to see when Qavah is better.  

I prayed specifically for Christian friends to be found here, and I am finding that God is sending them my way. We have been able to share scripture, pray, and exchange emails to stay in touch.  Just today the Chaplin visited and shared his testimony.  He is a remarkable young man preparing for the mission field.  Born in Africa and raised in another religion, he shared with me how Jesus met him and gave him a new heart.  It was great for Qavah to hear, and because her suffering will be great, it is a joy for me to surround her with people who declare the power of the Lord to save. 

Love surrounds us here.  A young woman, a cellist, visited Qavah today and played for her.  She encouraged us to have Paul bring Qavah's little cello here, and she will give Qavah a few lessons while we are here.  Just after Qavah heard the theme song from Beauty and the Beast on the cello, a small group of people came in from "Build a Bear."  She chose a puppy and two outfits in which she could dress the puppy.  That has kept her busy most of the afternoon.   

Tomorrow, when Qavah begins chemotherapy, she will be in isolation and connected to an IV pole for 52 days.  At that time she will not be allowed any stuffed animals or toys that can't be washed each day.  She is not allowed plants or flowers because of the mold and fungus.  But she can have cards, and has already received some today.

This is a journey of physical healing for Qavah, but it is also a spiritual journey.  Fears will be overcome, trust in God's plan will unfold, and a little girl will show us what child-like faith is all about.

Monday, May 21, 2012

Monday's Update

There has been a "speed bump" in Qavah's care that means a minor delay of chemotherapy and the drug that was supposed to be given this morning.  Details on the CaringBridge site.

Sunday, May 20, 2012

Sunday

Contrary to what I said in my previous post, Qavah's CaringBridge journal has been updated again, even though the weekend is not over.  I'm also feeling better today, although still taking it easy.  My brother, Paul Burton, (who is a RN) was able to administer my IV antibiotic this afternoon.  That meant the home health nurse didn't have to visit.    

Thank you for the prayers!  Our entire family needs and appreciates them.  We pray the rest of your Sabbath is a blessed one, full of peace and rest.

Saturday, May 19, 2012

Weekday Adventure

*Qavah's CaringBridge journal has been updated for the weekend.  Click on the CaringBridge picture on this website to read the post.*

Here in Virginia, the Lord gave us this past Thursday a beautiful Spring day.  So, I invited Jennifer and the grandchildren over to pick cherries.  Our cherries are not as sweet as the Bing Cherries found at the local grocery store, but they were still delicious.  This is the first year we have gotten cherries before they became rotten or the deer ate them.  It turned out to be such a wonderfully fun activity for all. Grace braved a ladder to get the cherries that were up high. The children squealed with delight and, for every cherry they collected in their bowl, they ate one.  Joel, the youngest grandchild at twenty months old, ate more cherries then anyone!   Jennifer brought her fancy camera, photography skills and, together with my little camera, we took some pictures of our cherry picking adventure.

"One must ask children and birds how cherries and strawberries taste." -Johann Wolfgang von Goethe





Wednesday, May 16, 2012

FYI: Health Updates

Qavah's CaringBridge journal has been updated with today's news.  Click on the CaringBridge icon/picture to visit her website and read the entry.  She now has two central line Hickman ports placed, one near each shoulder.

Back home, I've been staying busy this week with daily visits from the occupational therapist, physical therapist, and home health nurse.  Monday night, I had the surgery staples removed, because my body was rejecting them.  Friday, I will be visiting the surgeon's office for my two week post-op appointment.  I'm looking forward to showing the doctor and physician assistant my miraculous recovery, which includes the ability to walk again!

~Kathryn

Monday, May 14, 2012

Moved In

I packed our things in moving boxes rather than luggage.  Then I asked Paul to load his dolly into the back of the van so that when we arrived to the Ronald McDonald House we could move in easily.  We arrived last night in a rainstorm at 11 o'clock.  The unpacking was a breeze with the dolly.  Especially because our room is on the twelfth floor, we were happy to pile that dolly high with boxes and we moved everything in just three trips.  One box labeled "bedding" was opened quickly and while Paul put groceries in the cupboards and refrigerator, I made up our beds with sheets and blankets from home.  Teamwork.  I am so grateful that Paul and I are in this together. We got into bed feeling very grateful for the strength to accomplish so much in one evening.  

Qavah had her CT scan today, and if all is well in her sinuses, we will proceed with the plan to have her central line put in on Wednesday morning.  She has had her evening bath and is watching a movie before bed.  Paul is working at a desk nearby while I write.  This is our new normal.  

I met our neighbor in the apartment beside us, who is here for just one evening.  She and her husband have 17 children, ten of whom were adopted with special needs.  She gave me her business card and asked us to consider using their cottage by the river about an hour's drive from here near Clarion.  She said we would need get-a-ways, and they do not use the cottage during the week.  I am amazed.  In a twenty minute conversation we shared a love for God, a love of children, a love of meeting the needs of our kids, and suddenly we were as close as sisters.  I find this to be an amazing world, one in which we do not hear enough about the good, honest, hard-working people, who love to give their best.  It is an honor to be here and to be chosen to walk this journey with Qavah.  I'm glad God trusted us with this mission; through it I am learning more about His beauty shining through the hearts of those around me.

Friday, May 11, 2012

Packing up

We had the family over last night for an early Mother's Day celebration, and a last chance to see them before we leave for Pittsburgh. Annelise and Nehemiah came in the door and saw their Aunt Kathryn standing up for the first time in months.  They exclaimed over that and said, "We were praying you could walk again!"  They were so excited about their prayers being answered. After the dinner, I went into the kitchen to find Kathryn standing at the kitchen sink rinsing dishes.  She said, "Oh Mama, look at me standing here doing dishes!"  She was teary-eyed from an overflow of gratitude springing up from her soul.

Before she left last night, Annelise wrapped her arms around Qavah and said, "I love you Qavah, and I will pray for you every day." At five years old, Annelise is already trusting in the goodness of God to listen to her prayers.  Qavah returned the blessing and then went to her box of prayer cards and gave Annelise a stack of them to hand out to friends.  It is humbling to see how God is already at work in the lives of these children, increasing their sensitivity to God and His kingdom to come.  

A friend called me two weeks ago to say that her little granddaughter asked her third grade teacher if she could read Qavah's prayer card to her class and since that time they have been praying for Qavah.  She is also a reader of this blog and is keeping up with the prayer needs of our family.  I haven't met this little girl yet, but I am sure when I do, I will no doubt find the sweetness and compassion that God has put into her heart.  These little prayer warriors will be needed in the future as our world is spinning out of control, and falling far from the principles and laws set forth in God's word.  We are dependent on the mercy of God, and I am so thankful for the prayers of these little children.  "Red and yellow, black and white, they are precious in His sight."



Wednesday, May 09, 2012

Home Health

There is no place like home for healing.  Kathryn is making progress.  Her physical therapist is here now working with her.  She is in a better place today emotionally because her pain has lessened and she had her best night sleep yet.  Our small group came over last night and we had a great time of rejoicing and prayer together.  We had our meeting near Kathryn's bed so that she could join us.  It was wonderful to have her home and we are so thankful we chose having her come home rather than taking her to a nursing home for recovery.  She is surrounded by flowers of all kinds and her room smells so pretty.  Thank you all for praying for her, for sending cards and flowers, and for your words of encouragement to our family.

We continue to pack for Pittsburgh.  The bone marrow match found for Qavah is not from a living donor after all, but from the umbilical cord of a baby born recently who is of African decent.  The doctor said the donor bone marrow has been tested and approved and will be sent to the hospital next Monday where it will be stored until she receives it at the end of the month.  Qavah continues to talk about the upcoming trip with enthusiasm.  

I am headed out today to have my car serviced and to take care of banking details.  There is so much to do before leaving for an extended time.  Grace has been so helpful in taking care of things while I dash in and out.  She is daily surprising me with ,her helpfulness.  She is always aware of the needs around her.  What a blessing!

Paul used a verse form Hebrews last night during our small group time that I want to share.  It is from Hebrews 10:39, "But we are not of those who shrink back and are destroyed, but of those who have faith..."  Thanks be to God for the courage to do what is difficult.  May you also rejoice today as you stand on faith and do not shrink back.

Monday, May 07, 2012

Kathryn's Home!

Kathryn is at home now.  It has been a whirlwind day, but her body is mending rapidly and her doctor was amazed to see her up and out of bed this morning.  We are rejoicing quietly at home.  We are all amazed at how strong Kathryn is right now.  This is a strength that comes from a Higher Power.  We see this as confirmation that God has lifted her up, and there is so much more for her to do.  She has a journey to continue... on both legs.

But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.  Isaiah 40:31

Sunday, May 06, 2012

Happy Mother's Day To Me!


"I waited patiently for the Lord;
He turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
He set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him."
-Psalm 40:1-3


Sunday Morning

I've talked to Paul this morning and we are feeling very encouraged.  Last night was a turning point and Kathryn was more interactive and interested in what was going on around her.  She is even using her IPhone for commenting on some of her friends' Facebook pages. Her pain is being managed so much better.  Today she is going to try to get out of bed to use the bathroom.  Trying to use a bedpan is a good motivator to do whatever it takes to get to the bathroom.  She is anxious to have a sponge bath in the shower today after I get back to the hospital.  There is nothing like the healing force of warm running water splashing through a bed-head hairdo!  Kathryn is also eating and drinking normally and is hoping to have her IV fluids turned off today.  We are all feeling very hopeful as we see Kathryn emerging through this time more courageous than ever.  

As Paul and I have been praying for our girls, our prayers have not been solely for the deliverance of immediate health challenges.  The other side of those temporary challenges are the futures of two girls, who have grown very wise to the purpose of suffering.  Their future may lead them to help many who, like them, will face huge difficulties, and because of what they have been through, they will be able to comfort and relate to many.  And as they relate, it is our hope and our prayer, that they will be able to articulate the praiseworthy deeds of the Lord and His saving grace because He saw them through their storms.  Their suffering is not for themselves alone, but so that they will bring hope to others.  Not just in the form of a trite phrase, like "stay strong; you are going to make it," but the strong words from scripture which boldly states, "O LORD my God, I cried to You for help and You healed me." Psalm 30:2

Father, When we are tempted to give up in despair, grant us grace to remember Your words. "My grace is sufficient for you, for my power is made perfect in weakness." II Corinthians 12:9

Saturday, May 05, 2012

Sabbath Rest and Healing

Paul stayed home today and rested then came back to the hospital tonight to relieve me.  Kathryn was so happy to see him and we shared a prayer time and Bible reading together. After saying goodbye I drove home thinking about all that has happened today.  The hard things, the prayers, and the miracles.  The hard thing for Kathryn right now is the pain of movement and the slowness of healing because of her malfunctioning platelets.  She is very bruised and her CBC was 12 yesterday and 8 today.  The doctor said that a transfusion would help, but he is holding off, hoping tomorrow's numbers are better.  Although she could not manage to get up today, Kathryn has strong arms.  Today she was able to lift herself up with her overhead triangle while x-rays were taken.  She was given a set of x-rays and could see the outline of her new ceramic joint.  She is thrilled with it.  

Our prayer for her is that she will be comforted by the Holy Spirit, and will use this present challenge to the glory of God.  She is fighting her way back, and every inch is a struggle.  But I saw her smile several times today, and I know that nothing can steal her joy.  Thank you all for praying for her so faithfully.  I will update again tomorrow afternoon.  Goodnight and God bless you all.

Recovery Mode

10:00  AM     Paul spent the night at the hospital with Kathryn.  At some time during the night she was given a pain medication which began to work well for her and she fell into a deep sleep.  Paul slept in a chair and watched over her during the night.  (I just read that last sentence and laughed.  Paul actually woke up each time a nurse came in and he protected Kathryn from having to answer a lot of questions so that she could continue to sleep.)  I got here as the sun was coming up and brought them fruit smoothies to start their day.  Kathryn is making progress, but was not able to sit up when the physical therapist tried to work with her.  Her balance and pain levels prohibit much movement.  She will try again to sit up after lunch.  The doctor said that her bones were so tiny that he was able to use all ceramic to put her back together.  Which is wonderful because there will be no metal to react to, and ceramic lasts much longer.  There will be x-rays taken this afternoon and she will be able to see her new improved skeleton.  I'll update again later today.  Our prayers are for an easier day, and good pain management.

Friday, May 04, 2012

Hospital Rooms

9:00 PM  Kathryn is in her hospital room.  Paul is there for the next few hours. I have come home to see Qavah.  Grace and I are getting her ready for bed but I wanted to give you an update.

Kathryn has been in tremendous pain since she woke up from surgery.  But it is not coming from her hip.  It is coming from her right knee.  Grace and I just had a prayer time with Aunt Lil, Uncle Tony, and friends who were visiting with them.  Their call from Florida brought them near, and their prayers ministered to my heart.  We have agreed together in prayer for the healing of Kathryn, and for the pain to subside.  I will not have a clear picture of all the surgeon did until we have a longer talk with him.  He had some concerns, but we knew going into this surgery that it was not going to be as easy for Kathryn.

Our merciful God is seeing all.  He has sent some wonderful people to help with Kathryn, and the hospital staff has been very understanding.  She'll have more platelets tonight to help bring healing to the surgery site, and I can't help but think that God, in His mercy, will comfort her as she sleeps.  We wait for Him with hope and patience.  Thank you all for praying.

I am having some trouble posting comments today.  I have several comments in my Gmail box that are not transferring to the blog.  I will work on that when I get more time, but just know that your encouragement means so much, and I can still read your comments to Kathryn when I go back to the hospital.  

Out of Surgery

3:00 PM  I just had a call from the surgeon and he sounded so relieved.  The surgery is complete, and I will be able to give you more details as I get them. Kathryn is going to recovery and hasn't woken up yet.  I will see her when they call me again.  She and I were praying for the surgeon before she was taken into the OR because he seemed beside himself with the stress of cutting into her.  His first comment to me had to do with the fact that the bleeding was well under control and the new platelets functioned just fine!   He is the surgeon on call this weekend, for which we are thankful.  Thank you for your prayers and cards to Kathryn.  A lot of love has gone into this event in her life, and she will be thanking you as soon as she is able.

Lord, on behalf of all who love Kathryn, thank you for seeing her through! In Jesus' Name Amen!

Surgery Day

8:30 AM
I will take my Laptop to the hospital and update from there.  We are about ready to leave the house.  Kathryn is doing well, and the fears about the surgery have subsided.  She is covered in prayer, and ready.  Lord, have mercy on Kathryn today. 


11:00 AM
IVs are set, platelets to begin 30 minutes before surgery.  So far, the doctor is on schedule to begin surgery at 1 o'clock.