Friday, November 18, 2011

Match Found

There is a cord blood match that was found for Qavah.  Given her heritage, it was like looking for a needle in a haystack.  The doctor told us today in a conference call that it wasn't an identical match, but it was close enough that we are going to continue on this path.  Our next step is to take her to the hospital where the transplant will take place, and she will have a complete physical and blood study.  If she is found to be healthy enough to proceed, we will come to the place where a decision has to be made.

There were other close matches, but this one in particular, which is cord blood, is already collected and stored in a blood bank.  When we finished our conversation with the doctor, Qavah wanted to know what he said.  When we told her that there was a match, she jumped up and down with joy.  She stated to Annelise  the reason for her happiness.  "If I get this new transplant blood, I won't have to go to the hospital for a bag of blood all the time!"  She understands why we are pursuing this for her, and seems to be happy enough about it to tell a friend.  For now, she doesn't seem to be aware of the risks, so her joy is not diminished by fears.

Our times are in God's hands, Ps 31:15, and we don't know what He will require of us.  We need His help to guide us, to show us the way, and do as Qavah does; focus on the joy and not the fear.  

Wednesday, November 16, 2011

Update

The past few days I have been working hard on reviewing Qavah's medical records in order to fill out some paperwork for research.  It took almost two days to sort through labs and other data then record everything, but I emailed it off yesterday.  It felt great to have that finished.  I also checked on the status of Qavah's donor search.  There isn't anything yet to report.  The nurse in charge of finding the donor said that it is just going to be a long wait until every donor base is searched.  We continue to wait and pray, and accept the possibility that a donor may not be found at this time.

Qavah has been catching up to grade level on her reading skills and has been learning her numbers and simple math.  For several reasons, including her deafness, she has been delayed.  The milestones she is hitting are thrilling for us to witness.  These are the things that make our days interesting and we feel like cheerleaders as we watch the girls fight hard and win.

We have had a beautiful fall, but alas, the north wind picked up this afternoon and with gusts of 40 mph the winds will strip the leaves off the trees tonight.  I suppose it had to happen eventually because the doctor's offices are playing Christmas music in their waiting rooms.   Time to think about homemade Campbell's soup.

Sunday, November 13, 2011

Great Day, Great Weather, Great Ideas

Although Autumn is coming to an end, there is still color on the trees here in Virginia.  When I look up to the mountains I see a lot of deep reds and dark oranges.  Best of all, the leaves that have fallen are crunchy now, and as I step on them I think of my school days in Michigan and walking to school through great piles of leaves along the sidewalk.  

The weather has been warm and mild. Kathryn slept up in the tree house yesterday afternoon.  Paul set up a lounge chair for her and she slept and rested.  Her medication has been changed and she is now on a cough medicine to help clear her lungs, and a new antibiotic.  She was feeling well enough to go to church today.  While Kathryn slept up in the tree house, Qavah raked big piles of leaves and then jumped into them.  At bath time I took her shoes off and a shower of broken leaves fell to the floor.  She laughed as she recounted the fun she had in the leaves that afternoon.

Paul and I have started a new project and we are now working together to make a sun room off the back of our house.  Paul has been reading up on solar heating strategies, and I am dreaming of the winter afternoons when the girls and I can sit in a warm room filled with sunshine.  This new room will have plenty of south-facing windows, and it will be a place where Qavah can play and be warmed by the sun.  Once her red blood cell levels drop below 9 she becomes chilled and usually goes to bed in the winter to warm up with her electric blanket.  The sun room should be a real treat for her.  Paul and I are looking forward to working on another project together.  During the night when we couldn't sleep, we went down to the kitchen, lit some candles, and discussed the building project over a cup of decaf coffee.  From three to five in the morning we enjoyed the quiet of the house, and the time to dream. 

Using the ideas and dreams we have is just another way of enjoying the time God has given us.  Our sermon this morning reminded us to make the most of our days; to number our days, so that we can gain wisdom and honor the Lord with our lives.  It's what we hope to do, and Lord willing, we're starting the project this next weekend.  

Thursday, November 10, 2011

Appointment week

After taking a great get-a-way vacation, we came home to a full calendar.  I have been to my own doctors this week for a yearly routine check-up.  The girls have had several appointments with their doctors too. Kathryn had some good news, and some not so good.  Even my car had an inspection, and needed an oil change.  As I have been busy taking care of these things this week, I have been playing a new praise and worship CD in my car as I have been driving.  The words and melodies continue playing in my mind as I am cooking, cleaning, or getting into bed for the night. Words that remind me that God sees, and He is faithful.

If you have a time of prayer and want to add Kathryn to your prayer list, she would be grateful.  Her cough has returned, and she thinks she may have a crack in one of her ribs from coughing.  She is experiencing a sharp pain in her side.  She is moving slower and trying to keep from coughing, but the colder weather seems to aggravate her bronchial tubes.  She has two more appointments tomorrow and should have a better idea of what is happening.  Hopefully it is something that will pass quickly.

We are often reminded that we are not in control of our circumstances.  In times like these it helps to have a song in our hearts that keeps reminding us that these present trials are nothing compared to the weight of glory to be revealed when God shows us His power and the battles are won.

Let the weight of your glory cover us,
Let the life of your river flow
Let the truth of your Kingdom reign in us,
Let the weight of your glory fall!

Saturday, November 05, 2011

Making More Memories

We lit our Sabbath candles tonight with thanksgiving to God for the wonderful week we just spent in Florida.  We had a window of time before Qavah's next transfusion, and Kathryn's Remicade treatment next week.  So we left the Roanoke Valley last Friday morning just before the wintry weather arrived.  The further south we drove; the better the weather.  We had a mild week full of sunshine and blue skies.  Paul took Qavah to the beach in the afternoons and the two of them hunted for shells and moved a lot of sand.  Paul took me to the symphony one night, and we went to the Sunken Gardens where Kathryn took over two hundred pictures of blooms and palms.  

Aunt Lil and Uncle Tony opened their home to us and had prepared their guest room just for the girls.  The theme of their room was an outdoor tropical paradise.  It was very welcoming with many wonderful touches of Aunt Lil's creativity that I will display in pictures soon.  We needed to get away.  We needed to see the girls run along the beach and put all of their medical issues aside for awhile.  We had some great times together.  As we drove, we listened to Randy Alcorn's book on tape called Heaven. I don't think I can put into words how precious that time was for us. It was a happy time.  We'll be missing the warmth of the south as winter sets in, but  tonight Paul built a big fire in the fire pit and we celebrated his birthday under the stars with s'mores and hot coffee.  There is a winter-like chill in the air, but the fire and the family gathering was heart-warming.

During our vacation we had so many laughs and afternoon naps that I think we can continue on with our batteries recharged.  I wish I could have taken a bunch of people with us.  There are many families today needing to get away and rest from the hardships of life.  I am very thankful for the rest that our vacation gave us, as well as the Sabbath rest we will be enjoying over the next twenty-four hours.  We've just changed the clocks and are ready to crawl into bed.  God bless your Sabbath rest.