Paul had dinner last week with Colin and Jennifer. It was getting late and I wanted to talk to him before I went to bed so I texted him. He didn't reply, so I texted Colin asking if his Dad had left their house yet. Colin replied immediately and said something like, "Dad stated just a few seconds ago that he thought he should go because Mom is probably texting me about now." When Colin wrote to report that Paul and I were miles apart but still tuned into each other, I sent him back a message that was short and to the point. "Bookends." After so many years of married life we can just about predict the other. So when he walked into the cafeteria at the hospital to greet me today, Kathryn noticed that, without consulting one another, Paul and I had both chosen to wear black and red. I put my arms around Paul and I whispered "Bookends" in his ear. There is a lot being held together because we are both willing to shore up our end of the commitment to our family. Thanks be to God for my "Bookend."
Thursday, June 28, 2012
Several people have asked if Qavah has ever "Made a Wish". She has, and I am pondering Qavah's wish tonight. You've seen the commercials of the superhero football player who has carried the team to a Super Bowl win. He grins at the camera immediately following the game and triumphantly announce that he is now going to "Disney World." Many children facing medical challenges do choose Disney World for their "Wish", but when asked, Qavah has consistently requested the beach. She just wants to go to the beach and play in the sand by the water with Annelise. It will be a while before her new immune system will be able to handle the micro-organisms in sand, but Lord willing, it will come to pass.
Since the room is quiet and I now have time to ponder, I was thinking about what Jesus did when life was pressing in hard and He was tired and worn thin by the demands of His ministry. He was fully man, and with that being said, He needed naps and a get-a-way from time to time just like the rest of us. But He didn't go to an amusement park, He went to the beach. The shores of Galilee bathed in sunshine was His place of refuge, with the open blue sky above, and soft sounds of lapping water. His refreshment was found in the quietness, and the simplicity of nature. He withdrew in a boat to a desolate place. (Matthew 14:13)
As I am pondering Qavah's wish tonight, I think she is on to something. True refreshment for her is pretty much the same as it was for Jesus. An hour ago I tucked the blanket under her chin and she said, "Mama I am so tired." I guess so! After fighting and winning such a victory, it's time to think about going to the beach!
at 12:35 AM
Monday, June 25, 2012
Last Thursday, Kathryn's surgeon gave her the "all clear" to travel. Two days later, Paul picked her up in Fishersville, and she is now here with me in Pittsburgh. I have not seen her on her feet and able to walk normally since last March. When I left, just nine days after her hip surgery, she was beginning to walk around the house a little bit. So when I saw her striding along the hospital corridor, I knew I was seeing a walking miracle. I am so happy to have Kathryn here with me for a little while.
Thursday, June 21, 2012
As Paul and I sit in Qavah's room taking our turn rubbing her feet and reading to her, we have been seeing subtle changes that have led us to believe that her healing is more than bone deep. A healing is taking place that reaches into her innermost being. She quietly began to tell me some things that were on her heart this afternoon that had been hidden in her soul.
Our conversation today began with Qavah saying, "I love you, Mama." Then she began to cry and confess things that she had done in the past that she felt terrible about doing. She told me how sad she was when she thinks about our dog, Ellie, who had to be put to sleep a couple of years ago because of her advanced age. She tearfully told me that she was mean to Ellie when I wasn't looking and asked me to forgive her. That confession led to more admissions of guilt in her actions and attitudes. I said, "Qavah, I forgive you, and Jesus does too," after each admission of sin. I felt so humbled because God chose me to be the one to forgive, and to assure her of His forgiveness. In her physical suffering, she has been brought to a place of complete dependence on us, and a new level of trust has begun. Today marks a new start in her relationship with me. She trusted me to hear her confession of sin, and that I would not cast her out. I am humbled by the actions of this little child today. I want to shower her with my love, and add to her blessings.
Suffering is a difficult teacher. But when suffering produces such goodness and beauty that it takes the breath away, it is a mystery why we choose to run from it. No one I know wants to raise their hand to the question, "Who would like to suffer today?" But suffering is like a seed, and it can produce fruit of the sweetest kind. For Qavah, who dared to show me the secret places of her heart today, her spirit is now at rest. A weight has been lifted from her shoulders, and a sweetness and lightness has taken its place. James 5:15-16 states, "And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed."
Sunday, June 17, 2012
Paul is back here in Pittsburgh for the week. We are sitting quietly in Qavah's room, Paul reading a book while I write. Qavah's emotions and engaging personality are now hidden behind layers of pain medications. Even though she seems so distant, I still know that she is in there somewhere. Paul continues to read to her from time to time from The Chronicles of Narnia. Her doctor told us that it will be approximately another seven days of this, and by then, she will begin to rebound. The chemotherapy drugs have taken her to a dangerous edge, yet as soon as the new cells begin to multiply, her life will spring forth and she will never be the same. I hope Paul and I will have enough energy to keep up with her as her old diseased cells leave to make way for the new.
Qavah's new cells came from the umbilical cord of a little African American boy born four years ago. The mother signed a document stating that she would allow the afterbirth to be used for science. The cord blood was collected and frozen, and because that baby lives, Qavah will live. There is so much more I could say here about the value of every human life. The world is going to be astonished by the great strides in healing by using cord blood as a medicine. What once was discarded is now the hope of many.
Paul and I are exposed to stories here, some of magnificent healing, and some of profound sorrow. Last night we heard some very sad news about a ten-year-old boy down the hall. His father told us the news, and we came back to the room to pray. G.K. Chesterton said, "I had always felt life first as a story: and if there is a story, there is a story-teller." For Qavah, and the little boy down the hall, the Story Teller is at work. Sometimes the plot is difficult to understand, but after this life, we who believe that Jesus is the Son of God, will be raised up to live with the One Who gave us the greatest story ever told. It is the Good News that Christ has reconciled us to The Father by his death and resurrection. He forgives our sin, and makes us His own. To believe that story is the beginning of our greatest adventures.
at 5:14 PM
Wednesday, June 13, 2012
Tuesday, June 12, 2012
Qavah is doing very well. Praise God, from Whom all blessings flow! She is at this moment singing at the top of her lungs with the music therapist. Her transplant is complete and there is a feeling of relief around here; and there is joy. We are all in awe of how well Qavah's body accepted the new cells.
Ten minutes before the transplant team came into Qavah's room with the cord blood, I scribbled these words in my journal. "My thoughts are racing. So many months and years in process all comes down to this. The donated cells are being thawed at this moment. The room is ready with all life-saving equipment should Qavah's body go into shock. I am anxious, excited, giddy. Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come." 2 Corinthians 5:17
We thank God for all of you; all who have cheered Qavah on in this quest. The bone marrow has been "planted" into Qavah's bloodstream as seed is sown into fertile soil. Now we wait for the cells to mature and take over. We should see those results in 21 days, and Lord willing, platelets begin to show up in her blood in thirty days. So many answered prayers all wrapped around today! What a gift; the gift of life.
Monday, June 11, 2012
Paul left the hospital last night around ten o'clock and went back to the apartment to sleep. I remained at the hospital and continued Qavah's body washing routine throughout the night. Around six this morning, Qavah was asleep and I looked at her peaceful little face before leaving for the apartment. She has had a great attitude about everything, even the middle of the night interruptions. We were cheering for her today when she wanted to eat a fortune cookie. She cracked the cookie open and it read, "You will live a long life and eat many more fortune cookie." The laughter that followed felt so good.
Kathryn is back at home. She is able to eat baby food again, and is happy and thankful to be back in her beautiful bedroom at home. We have been in touch with her today, and feel so thankful for her faith, and words of courage. She sent me a text that read, "God sweetens outward pain with inner peace." (quote by Thomas Watson) We pray her body will stabilize with rest and baby food. Paul is leaving Pittsburgh on Wednesday to go back home for a time. He will be able to take care of some household responsibilities, and attend some important meetings at his office; but best of all he'll be able to spend time with the rest of the family.
Our schedule of Qavah's BMT protocol calls today, "Rest Day". There have been fewer nurses, fewer interruptions, and a quietness that has settled over Qavah and her room. Tomorrow at One-thirty in the afternoon, the Bone Marrow Transplant team is scheduled to arrive with Qavah's life-saving bone marrow. It is a big day for our family; a promise fulfilled to Qavah.
Saturday, June 09, 2012
The further Qavah is taken into the chemotherapy process, the less she cares to look at food. She orders it with a smile, yet when the tray arrives, she cringes. At the same time, Kathryn is in the hospital in Virginia and is unable to keep anything down in her stomach. Her GI tract is not balanced after all the medications she received for her infections associated with her hip surgery and recovery. She tries to sip, but her body rejects the least little fluid. She is being given fluids through an IV after entering the hospital dehydrated. The doctor added liquid vitamins to the bag for nutrition in the hopes that the situation will turn around in a few days.
Paul and I have been here in Qavah's room, taking turns rubbing her feet and reading to her. She is also being entertained by watching the entire BBC series of The Chronicles of Narnia. The nutritionist came by, and asked what Qavah had been eating. I gave her a brief report of the past few days; a sip here, a bite there, but nothing close to a full meal. She responded by telling me that Qavah has not dropped any weight and added, "She must be living on love." It is written in Matthew 4:4 "Man does not live by bread alone but by every word proceeding from the mouth of God." Would it be possible that the hours we are spending in prayer over our girls and reading scripture over their situations is better than fixing them a table full of food?
Kathryn just text messaged me and told me that she was listening to a sermon in her hospital room from the Hope of Israel Church in Charlotte. I am so proud of her for accepting the food being offered to her soul, and for not turning her nose up at it for lack of a spiritual appetite. When our bodies are frail, and food has lost its appeal, may we cling to the truth of His word and say, "We have feasted today on the bread of life." Thanks be to God, Who is daily blessing our girls through His life-sustaining word.
Jesus said to them, “I am the bread of life; whoever comes to me shall not hunger, and whoever believes in me shall never thirst. John 6:35
at 1:32 PM
Thursday, June 07, 2012
Yesterday, the Children's Hospital of Pittsburgh held a special "Alice in Wonderland" Prom for their patients. My mother wrote about Qavah's wonderful experience on CaringBridge. Below is a short news video about the event. There's an advertisement video first and then the story airs:
Monday, June 04, 2012
We are trying to help Qavah keep a sense of time while she is in isolation. It is easy even for adults to lose track of the day and date, so we are trying to help ourselves as well by having set times when certain things happen. Friday night is "movie night", and Sunday morning is our little family worship service right here in her room.
When we arrived in Qavah's room Sunday morning, I wore an outfit that I would wear to church, and Paul had a Bible with him as well as some grape juice and matzoh for communion. Qavah sat up when we walked in and looked at us, rubbing her sleepy eyes. "It's church day" we announced. She got so excited. Waking up to something different than the every day hospital routine was something she needed. I read from Psalms, Paul prayed, and then he began our communion service. Having served as an elder in the Presbyterian Church, he is always willing to serve communion to our family. As he broke the bread and gave it to Qavah to dip into the juice, he said, "Qavah, this is Christ's body broken for you, and His blood is more powerful than the new blood you will receive next week. His blood has the power to forgive your sins and to raise you up to live with Him forever in Heaven." She took the bread, dipped it, put it in her mouth, and savored it.
Sunday afternoon we were allowed to put a face mask on Qavah and take her to the chapel on the sixth floor. We met with a Christian couple and their four children to pray, sing, and worship. The chapel within the hospital is a meeting place for not only Christians, but also other religions of the world. I wondered how the chapel would be set up to accommodate multiple religions and I found out on Sunday. Behind the altar is a very nice built-in cabinet. The cabinet doors were open to reveal a beautiful silver crucifix; a reminder of the sacrifice made on our behalf at Calvary. For the other religions, the cabinet doors are closed, and Jesus is hidden away. As we observed this on Sunday, we had to rejoice all the more, for hinges and closed cabinet doors can never diminish the power of that shed blood of Christ. Just as Paul said, His shed blood has the power to forgive sin, and to raise us up. His power is seen in this hospital in every act of love, healing, and deliverance from evil. He isn't hidden in the cabinet in the chapel; Jesus, the Great Physician, walks these halls.
Saturday, June 02, 2012
This has been a quiet day here in Pittsburgh. The doctors' visits were few. Her room seems quieter than usual. Since chemotherapy was halted for the weekend, Qavah has been taken off her IV pole, and is able to make trips to the bathroom and move about the room as she wishes. She has been standing at the window quite a bit today watching the world go by from the ninth floor. I thought perhaps she might be homesick because she talked about her bedroom at home and the tree house. I misjudged her quietness. Later, when I was reading to her, she stopped me and said, "Mama, I am staying here until I get my new blood." Homesick or not, Qavah has come here for healing, and she declared she is not leaving here without it.
In quietness and confidence shall be your strength.”