Preventative Measures

Qavah's doctor called us this afternoon to go over the test results and ultrasound taken in Pittsburgh.  He further explained the process of preparing Qavah's little body for the bone marrow transplant.  A preventive measure against infection during chemotherapy is the removal of all of her remaining baby teeth.  Because a loose tooth can cause infection, the eight to ten remaining baby teeth have to be pulled, including molars.  I thought that sounded drastic, but after a second and third opinion, we realize that this has to be done and is actually standard procedure for children undergoing chemotherapy treatments.

We have an appointment to take her to Richmond, Virginia for a dental consultation and subsequent oral surgery to remove her baby teeth all at once under anesthesia.  This will most likely be done in early March, giving her mouth ample time to heal before the BMT.  So much of what will be happening to Qavah over the next six months will be difficult.  Yet I have seen how tenderly God has cared for Kathryn, and it is a comfort  to think Qavah will be given special grace just when she also needs it.

I was sitting here thinking about life beyond this problem Qavah has with her immune system, and the need for transfusions.  If this transplant works, she will be free to sing in the homeschoolers' singing school with children her age.  She will be able to pet and ride horses without getting a skin infection.  She will be able to do so many of the things other children do naturally. The joy I have in thinking about her doing those things brings me to tears.  Please pray that we will be wise and thoughtful concerning Qavah's difficult days.  We will need to study her to know her needs physically and emotionally, and respond appropriately.  

Whenever I am tempted to think this procedure for Qavah is a big deal, I think of my neighbor who has adopted fourteen special needs children; some requiring feeding tubes.  Seeing her manage it all with a smile on her face is like watching a Biblical lesson played out.  God does equip us for the tasks He gives us.

Blessed

I will try to paint a picture for you of our trip to Pittsburgh, so that you can know the many ways the Lord has heard our prayers.  First, Qavah was healthy and strong.  She breezed through every test required of her and the nurses, technicians, and doctors were all very good with her.  The tests revealed the strengths and weaknesses in Qavah's body and gave the transplant team a good idea of how her body works.  

Qavah asked me before each test if anything was going to hurt.  She seemed satisfied with my answers and I could tell she was trusting my judgement.  The only painful test was a blood draw on Friday and when the large wooden treasure box was wheeled into the room, the pain was soon forgotten.  From the treasure chest, Qavah chose the movie Flicka then watched it on the way home to Virginia. She seemed very pleased with her selection.

The Ronald McDonald house was the most amazing feature of the trip.  It connects to the hospital through a glass enclosed walkway.  We did not have to go outdoors to get to appointments and with the weather being in the single digits in Pittsburgh, that was a blessing.  When we arrived the first day, we were fed in the family dining room by a group of people wearing a badge with the name, "Lydia's love project."  We later discovered that Lydia's friends and family still come to serve the families staying at the "house" once every two months.  Lydia, a little girl of six or seven, did not survive her kidney cancer, but her parents and family survive the loss by continuing to reach out to others, and served up comforting food in her memory.  We were so touched by their kindness.

Our room at the house was a one bedroom apartment, complete with kitchen, living room, and bathroom.  There are ten floors and the facility houses sixty families.  The lower floors are dedicated to teaching classrooms and meeting rooms.  The top floor, called the "penthouse", is a large play area, laundry room, kitchen, and dining room, where families can meet and mingle.  One evening, Qavah was told to check the far corner of the dining room where she would find gifts from the community.  She chose some books, and a few other things that were geared toward keeping kids busy while waiting for doctor appointments.  We were told that the kitchen was stocked daily by area restaurants, and families could eat in the main dining room, or we could take trays to our rooms if we needed a quiet family time.  For some of the organ transplant families, this is a home away from home and they are there for a year or more.  

Throughout our time at the Children's Hospital of Pittsburgh we observed a lot of families working together. There was a particular patience with the process as families awaited their turn to see the doctors.  Waiting areas were amazingly organized, and mommies and daddies played with their children and nurtured them.  We didn't see anger, resentment, or frustration, over the loss of health, or dreams,  but rather witnessed a special grace that I believe comes from God Himself.  He does draw near to the broken-hearted, and the broken.  Qavah will be going back in April for some preliminary tests, and her bone marrow transplant is set to begin the first week of May.  We now know our way through the hospital and where we will stay during the procedure.  For the "unknowns" we have a place to go as well.  To the Throne room, where Jesus intercedes for those who believe in Him, and come to Him for help.

Preparing

We are still gathering records together, medication lists, and packing for the trip to Pittsburgh. There is so much to remember, and the older I get, the more difficult it is to remember everything. This is a quick trip, but it will be filled with appointments. We also want to become familiar with the layout of the hospital while there.  

Today, Kathryn showed Qavah the video we had watched several months ago when we were trying to decide where to take Qavah for transplantation. We found the video of Children's Hospital of Pittsburgh to be helpful in showing Qavah that it is a good place. We thought you might like to see it, too. Thank you to our family and friends who continue to pray. Prayer is appreciated, more than you know.

Link to "Welcome to CHP": http://youtu.be/uPV3czDo9LY

No Bugs

Last week, our "To Do" list got lengthier when Kathryn woke up and had several insect bites on her legs.  We called the exterminator thinking fleas, and after examining the bed sheets, he suggested we treat the room as though the bites were from bed bugs, although he did not find any on her mattress.  He set bed bug traps and gave us a list of things to do.  The room was dusted with diatamaceous earth.  Then we began the painstaking task of washing all bedding, all clothing in dressers, closets, and curtains.  The process continued throughout the bedrooms.  Since last Tuesday we have now washed over seventy loads of clothes, towels, bedding, etc, and there is not even a hint of a bed bug in the traps.  I think I may now have the cleanest house in our county.  Every closet was cleaned, and all beds and pillows placed in protective zippered covers.  

After the wake-up call on bed bugs, I read as much as I could about protecting ourselves from these pests, which are now taking over hotels, locker rooms, and even schools and public libraries. The exterminator told us that if we did find bed bugs we should check with Kathryn's Pulmonologist before spraying chemicals in her room.  None were found, thank the Lord, but we have a new respect for people who have unwittingly brought these pests home in their luggage. Because we went through this hard time, we have a plan to use only plastic ziplock bags and washable nylon luggage when we travel from now on.  

After the many things we accomplished last week, Paul and I took today to show off the beautiful Blue Ridge Mountain range to some visitors from China.  His company will be hosting several groups this year, and it was our turn to show some southern hospitality.  We drove them to the beautiful Peaks of Otter Lodge and had Sunday dinner at the window overlooking the lake and Sharp Top Mountain.  They were very impressed with everything, and especially enjoyed the peaceful setting.  They wanted to get a few souvenirs so we stopped by the local Walmart since it was on our way home.  Nearly everything they picked up to buy said, "Made in China."  They were perplexed as to why we should have so much merchandise shipped in from China.  We helped them pick out cosmetics and facial cremes to take home since many of them said, "New York."  It was a good experience for all of us.

The girls have had various health issues but they both saw their doctors last week and both are responding well to the medications they were given.  Qavah has a very advanced sinus infection, but is recovering nicely.  In an effort to keep her healthy we are keeping her close to home.  This morning Paul led us in a home church service and we listened to a sermon via the internet.  It isn't the same as being in church, but we are so grateful for the technology that keeps us connected to those who share our love of worshiping the One True God.  He holds all things together, especially in those times we think things are falling apart.

A Song In Our Hearts

Qavah has a marvellous way of handling her cold symptoms.  She pulls out several of her favorite DVD's and watches them from morning to night.  The sneezing, itching, water eyes, are all there, but movies like The Sound Of Music transport her to a better place hour after hour.  I can hear her in the bathtub singing with a stuffy nose right now.  She is singing the "Good Night" song that the children learned from Maria and it was sung at a formal dinner party at the home of Captain VonTrapp.  She is singing,"The sun has gone to bed and so must I."  I admire her for finding enjoyment in singing when conditions are less than perfect.

Paul and I are busy every day trying to finish projects we started over Christmas.  There is so much to do that we have compiled a lengthy list of things to accomplish before we take Qavah to Pittsburgh.  I passed him in the hallway a few minutes ago and saw that he was carrying a tube of caulk around,  looking for air leaks around the windows.    He mentioned taking care of these things now so that when we return home he will be able to service the lawn mowers in preparation for spring lawn care.  In all of the "doing" there is a peacefulness here, as though we are moving toward our goal without anxiety.  We wake up in the morning and just keep moving.  Qavah senses what is ahead of her in Pittsburgh, and has been praying about it at night before bedtime. Although we have this matter of a bone marrow transplant ahead,  we are all able to cast our anxiety heavenward, and move ahead with determination.

I have a song in my heart too as Paul and I continue chipping away at our list.  It's a familiar hymn to most, written by the Gaithers and sums up the reason we need not be anxious.

          Because He Lives

God sent His Son - they called Him Jesus,
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.

Because He lives I can face tomorrow,
Because He lives all fear is gone;
Because I know He holds the future
And life is worth the living just because He lives.

How sweet to hold a newborn baby
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because Christ lives.

Because He lives I can face tomorrow,
Because He lives all fear is gone;
Because I know He holds the future
And life is worth the living just because He lives.