History

Friday, September 6, 2013 4:47 PM CDT

We are settled into VA and wanted to update those of you who have patiently watched for an entry. Somehow, this site escapes my mind in daily life as we carry on with activities and healthy, happy kids.

We moved into our house in August which took most of the month as our shipments came in 3 parts. Dwight and Torin drove across country and Karina, Braydin and I flew. We did a majority of unpacking that week as they drove to make rhyme or reason out of the house. It is so much bigger than our last home and seemed to take longer. We love being home owners and have started home projects. Dwight is handier than I realized. He has never taken a large amount of time off since he has been in the Air Force. The kids seem very happy and secure to know we will be here for a few years. We have seen our families often and that is the best part of living on the east coast again.

We miss CA terribly. The community, the weather, schools, the way of living and our lives there. We knew it was paradise when we were there and are so thankful for that time. Maybe it will be on our list of areas for retirement one day.?.? Before we left the state we spent time in San Francisco, Monterey and Yosmite. It was an amazing trip.

The kids are doing well. School just started this week so it is good to have the kids back on a schedule. It was a good and long summer for them. We are so impressed with the elementary school and they are meeting all of Karina's needs. Torin is doing fine. Braydin is handling a huge high school very well. He seems calm and under control with a block schedule and knowing only one person. We are thankful for that.

The boys have really enjoyed their friendship with each other this summer playing tennis, biking and watching movies in our new theater room. They are handling the move like troopers.

Karina has been to her new primary care doctor who is the same doctor from when we lived here from 2006-2009. He is a fantastic man and we are blessed to have a great rapport with him. Karina's regular care for her bone marrow transplant needs is back with Dr. Kolb at A.I. DuPont Hosp. in Wilmington, DE. That hospital is like family to us and it was an incredible reunion from when we walked in the door till we left. We love that team of folks and they are working on getting Karina off on antibody infusion. Right now the plan is to give her 3-4 more doses to get her through cold and flu season then stop completely. It is offering her a small amount of protection but somehow we see this as a safety net after all of these years.

Karina has felt great and just celebrated her 13th birthday on the 3rd. She was so very excited to have our family here as my dad surprised her and drove up from Williamsburg. Tomorrow we will take her two special friends to American Girl Doll Bistro for lunch and a sleep over. The fun never stops!!!

God continues to show himself to us through this move. It was the hardest emotionally on all of us but we saw Him often with blessings small and big. We know God has rich plans for our time here and for now we are content and ready to live.

Karina will have the opportunity to sell her bracelets at a back to school event next weekend. She is SO excited and we are working hard to prepare her inventory for that. There is a blessing right there!!!

Thank you for checking in and for living with us in hope and faith. We listen to Him humbly and are excited to see what He has in store for our time in VA.

Blessings to each of you for your friendship and prayers.

Dana

Sunday, June 30, 2013 1:06 AM CDT

Time is flying happily by is an understatement!!! As I look back at the last 6 months I realize how normal life has become for our family. I rarely think about this site as I should for those who faithfully check. Sorry for any time I have caused you to waste!!!

The Sones news......we are moving to Virginia and we bought a home in Lorton VA in the same neighborhood we lived in from 2006-09. We pray for many happier days this time. No one has seen the house but me but I assured them it is spacious and they will love it. Dwight will be working in the Pentagon.....A5 for anyone looking for him.

The kids finished up school the end of May for the boys and the 7th of June for Karina. Karina will be retained for 6th grade next year to hopefully allow her time to catch up a bit academically and physically grow as well.

Karina continues to receive antibody infusions (7 years worth) every 6 weeks. She is on lots of vitamins, a very low dose of blood pressure meds, thyroid drug and hydrocortisone. Not too bad!!! She is happy and healthy. She uses her walker just at school or if my hands are too full to hold her hand. Karina is sweet and continues to light up the room with her smile.

Karina's jewelry business has been crazy busy. Maybe that is where my spare time has gone. She sells beautiful bracelets, bookmarks and key chains and it is all word of mouth. We participated in Relay for Life this weekend and had a super time. What an event!!

Our family took an amazing vacation to Hawaii for spring break. We loved showing our kids where we lived, worked and played for two years before they were born. We had a very special vacation, worry free, as best we could. Our lives and mental state have been totally engulfed in medical fears for Karina since 2005. It has been a burden that has slowly lifted. We praise God for every ounce of healing and the prayers that He heard and answered.

The packers come in 2 days and I think we are ready. California has felt like our "real" home in many ways for us the past two years. We have had opportunities that are once in a lifetime and have had the awesome privilege of being a part of Travis AFB. Words are not enough.......the people here love, encourage, enrich, grow, challenge and innovate. Our lives are changed and we are grateful for everyday we had to live here. We will leave a part of our hearts here.

The next two weeks will be a bit blurry as we move out of our home we love, say good bye to very special people and watch Dwight change command with a fantastic new commander. How unfair this all seems but we do know that God has wonderful blessings in store for us in VA. We will watch them unfold as he heals my heart from very difficult memories from our past assignment there, creates new memories, provides us all special friends, prepares our kids for new schools, teachers and friends.....and of course baseball teams. Praise God for the freedom to pray and give all this to Him whether in thanks giving or in requests. He caringly delivers us to where he needs us as children of God.

Karina's medical care will be transferred to A.I.DuPont Hospital for Children in Wilmington, DE. We were given the okay to return to the hospital we love and will make the trek every other month for her treatment.

Thank you for checking in and for caring about Karina and our family. I will update with our new address after we settle on July 12th. We won't arrive until later in July after some vacation in CA. Maybe by then, God will have all our hearts ready to say good bye to California!! :)

In His hope,

Dana

Saturday, December 29, 2012 11:58 PM CST

As 2012 comes to an end I am in awe of the progress that Karina has made this year. I seem to put this site on the back burner for no good reason except I think no one checks anymore.........then I hear that folks are wondering how Karina is. Well, for the no news is good news friends.........you are right! For those that have read this site for years know how quickly Karina can get sick and how much we appreciate the friends who click on this site often to be sure she is okay. Thank you all!!

Karina has grown 4 1/2 inches in the past year on growth hormones. Her weight has definitely kept up as well and sometimes we are concerned that she is too heavy. The bone marrow doctors love her looking so "healthy" . And that she is! I buy new shoes and clothes every month or two with no complaints as her wardrobe had clothes from her 6th birthday. No kidding. Karina is now off all immune suppressive drugs, off all long term antibiotics, magnesium, bactrim etc..........She takes a very small dose of blood pressure medicine, vitamins, anti nausea, thyroid medicine and hydrocortisone. These are lifelong drugs for her. We are waiting for her body to fight fungus then that drug will go bye bye too. It has been an amazing feeling to toss drugs away and for Karina to see so few pills in her container.

Karina is very happy and we have trouble keeping up with her social needs.......business dealings (i.e.. Jewelry business) and offers to play cards, read to her etc.........she just said to me tonight, " I don't want to sit around and be bored tomorrow." Just a side note, we just drove 220 miles today seeing the northern coast of California, walked the beach and went to a Charles Schultz museum. See where I am coming from? He he. We love her every breath of life. The boys love on her with kisses on her bald head and willing to do just about anything for her.

Karina's doctors will continue to test her immune function every 3 months. For now, we still go to Oakland Children's every 6 weeks for antibody infusions. She is very tired of doing this after more than 6 years, monthly infusions. It is a VERY long day of sitting hooked up and traffic to and from. We tell ourselves over and over how blessed we are to be on this easy schedule of life. God has provided so much for us and we will never forget to give Him the glory. I remind Karina why we are on earth.

One day in the future she will begin hormone replacement therapy at a very low dose. Her endocrinologist is watching her blood very closely. We are pleased with Karina's care.

The boys have had a bit of a rest from travel baseball and it is about to get busy again in the next few weeks. We all needed the rest. We have done extensive entertaining the last 3 months on top of weekend travels and all the responsibilities of the base and being parents of three kids. We love our lives in the AF and here in CA. Next August we will move on to a new assignment but will not know where till late spring or early summer.

Balance is our goal for the next 7 months. We are excited for 2013. Happy New Year to each of you and know we think of you and hope that many of you received our Christmas card and photo.

I sign "in His hope" as I believe in the hope God gives us and the promises he gives in the Bible. That hope has sustained our family through years of incredible stress, worry, sickness and replaced it with hope in HIs plan for us here on earth and a lifetime in eternity.

Our love to you all.

In His hope,
Dana

P.S. I would like to ask special prayer for two special friend of ours. Over the years each of you have prayered for Karina and our family. You have gained a reputation............"The Sones prayer warriors". Truly, people have asked me if I could ask you to pray for a need that they have because they know the prayers that have been answered for Karina the past 8 years.
Please pray for the Morgan Family. Robin is Dwight's family and her family was in a very serious car accident the week before Christmas. www.caringbridge.org morganfamily. Also, a dear friend of our family has a malignant tumor on his esophagus. Treatment will be determined in the next few weeks. His name is Ed. Thank you all for your faith and example to ALL of trusting in power of prayer. XO

Sunday, August 12, 2012 11:25 PM CDT

Dear family and friends,

Thank you to the many friends and family that came from near and far to attend my moms service. It was a beautiful testament of the friendships my mom and dad have held dear for many years. Your presence honored her and we felt grateful for your presence, love and support. That love continues on with my dad and he is grateful. Tomorrow will be 4 weeks since my mom's passing and it feels like much longer than that. I miss her every hour of everyday as talking to her was a part of my daily routine. I want to tell her all the exciting things going on in our lives or ask her how to make something or help me with a tough decision. She was there for every part of our lives. I love God's timing. Just shortly before she passed Karina was removed from her steroids and immune suppressive drugs. The first time off both in 7 1/2 years. That was the milestone that we all have prayed for through Karina's illness. I feel like she knew Karina was healed at that point before she went to heaven. I love knowing that.

Karina had her infusion of antibodies a few days ago and we basically had social conversations with all the staff. There is very little medically to talk about. The next infusion will be in 6 weeks where they will check her new immune system. There was some confusion if that should have been checked at this last apt. No worries.... in God's time. Our prayer is to be able to take away the face mask and remove 5 or 6 medications that Karina has taken since her transplant which are used as prophylactic (to prevent other illnesses). Karina is full of life and energy. She does not tolerate extreme temperatures, hot or cold, so we are being very careful with the heat wave we are having here in N. CA.

The boys are both playing travel baseball. They love it and we will be very busy on the weekends with tournaments. School begins Aug 22. We are looking forward to some vacation before then. Dwight continues to be non stop and loves his job.

God continues to provide hope in the healing process for our family. Thank you for checking in and we pray for you all as we see your names and messages on this site, recall a wonderful memory or think of you. God lays each of you on our hearts.

In His hope,
Dana

Wednesday, July 18, 2012 7:59 PM CDT

It is with great sadness that I write about my mom's passing. Mom died this past monday after a courageous battle with ALS, Lou Gehrig's Disease. Her service will be held this Friday, July 20th, 12 pm at the Williamsburg Community Chapel here in VA.

Well, I was just reminded that I have not written to you all since May. The kids finished school the end of May and we quickly took off for a two week trip to VA. We had a wonderful vacation celebrating the Sones 50th anniversary and the adoption of baby Abigail by Bruce and Laurie.

One great highlight of our trip was a surprise 70th birthday party for my mom. Debbie and I had a lot of fun planning the party and it was well attended by 40 of mom's closest friends. It was a joyful day! The last day that mom would leave her house...........

The kids and I headed to DE for the last few days which was great fun. We spent time with Karina's previous doctor, Dr. Kolb and her favorite DE nurse, Vicki!! We went to a baseball game, had breakfast with sweet friends the Morris' and sweets with Dona and ate ice cream at our favorite farmers market. It was a great end to our vacation.

The rest of June was full of activities with company to greet at the base and to our home. We have attended many ceremonies etc.....We have had a wonderful summer. The boys are in swim lessons and a few other activities. Karina continues to take horseback lessons. Both boys played all star baseball and now Braydin is playing travel ball.

Dwight is extremely busy and loves his job. We have been in CA just about a year and we don't want the next year to go by as fast as the first. We love our lives there and the beauty around us. Northern CA is fantastic. We hope to have a family vacation in August. We are excited about the Sones visit the end of August as well.

Karina is doing very well. In the past month we have weaned her completely off all immune suppressive drugs and steroids. It has been 7 1/2 years on prednisone so her body must feel a great freedom. She looks great and continues go gain weight which is not so good. She feels well and we are grateful for the normal life that we live. We remain vigilant about germs and the environment she is in. We were so thrilled that she made it across the country and back healthy. God continues to protect her. Our greatest concern is that her body accepts to absence of these two vital drugs that have controlled her graft vs host disease the past 6 years, almost.

I type with joy for Karina's life and sadness for my mom's suffering. There was no hope for a cure or comfort in her disease process but we rejoice in the promise of eternity. She is whole again, free from pain, and in God's house. We rest in that. I do ask prayer for my dad and the adjustment he has ahead. He has been a caregiver for my grandparents for years and then for my mom. He has had such purpose in life and a heart for meeting others needs. My parents have precious friends that will continue to embrace him and include him as he has much life ahead of him.

Thank you for checking in. Weeks go by like just a few days..........thank you for patiently waiting and always for your prayers. Blessings as you go......

In His hope,
Dana

Sunday, May 13, 2012 9:56 AM CDT

Happy Mother's Day! I pray each of you have a glorious day today celebrating you. Thank you for your sweet spirit of writing through this website to encourage and uplift. You have been an encourager to me, teaching me to be a better mother. I read your posts and smile as I think about each of you and the impact you made on my life, especially in my earlier years of mothering. You inspired me through your actions, faith and wisdom. Thank you. Sending huge internet squeezes to each of you.

The last 6 weeks have been wonderful since my last post. You are all very forgiving and patient waiting for updates but I know you know all is well when there is nothing new!!! We all love that!

Dwight and I spent 5 days in Tampa, FL for a commanders course which was outstanding. I learned a lot, ran into old friends and made new ones. It was a great trip. We spent Easter break in Monterey, Carmel and Santa Cruz. Did I ever say how beautiful CA is? We love that area and did a lot of fun things together. It was wonderful to be away on vacation together, relaxing.

The kids only have 3 weeks of school left. The boys get out May 31st and Karina the 1st. They are excited. We will leave June 5-19th for VA. We will celebrate my in-laws 50th wedding anniversary, visit my family, make a 3 day trek to DE to see Karina's nurse and doctor and some old friends. The highlight of the trip will be meeting Bruce and Laurie's (Dwight's older brother) new baby. They adopted a precious baby girl, Abigail, at 6 weeks old and she is going to be warmly loved on with all of us in town.

Karina is doing great. She received another dose of antibodies and will continue to every 5 weeks for now. She was asked to participate in a GVHD clinic day at Oakland Children's to be seen by a GVHD specialist from Seattle Children's. He agreed with Karina's doctors that it is time to remove her last dose of immune suppressive drug! She has been on it 5 1/2 years! The effects of removing the drug are all positive, we just must watch her skin condition. If her body is not happy with the removal than we would face another round or Retuximab treatment. This is a form of chemotherapy that we started in DE and completed last Oct. here in CA. I am not crazy about that idea but we will pray that God chooses to allow her body to be happy with the transplant and be drug free forever. Thank you for praying about this. We will not see immediate results from the removal of the drug but in a month or so. I am watching like a hawk. Karina grew another cm.

My mom is in good spirits but her body continues to decline. Her body is extremely week. My dad is taking care of her daily needs. She is mentally unaffected by the disease which is so important to us. We love reading what she is thinking and laugh when she jots something and we read between the lines to know EXACTLY what she means. She is a precious lady. She continues to have the ability to write and communicate very well. There are weekly issues with her comfort, side effects of the medications etc.........and my dad is Man of the Year in my book. They are the love story we all hope to have in our lives. She LOVES the cards you all have sent. Thank you for encouraging her in that way. It means so much.

The boys are just finishing up baseball, then come the playoffs and maybe all-star for both of them. They have had a great season. We met lots of new friends and they did too. We feel so fortunate to be her in CA.

I continue to stay very busy with base activities and supporting Dwight however I can. We love it here but certainly miss our families and being closer to home.

God is present in our lives, daily. We have had the opportunity to share Karina's story in the base newspaper the past two weeks to promote the Bone Marrow Drive her coming up this week. It is very exciting to know that others may feel compelled to be on the national registry after learning Karina's story. You may not recall but in the summer of 2006 when she relapsed, there was no match for her on the national registry which consisted of 10 million people. The doctors went to cord blood that was banked from donation. Those are not enough cells for an adult but it was enough for Karina. We hope to register 1000 people! I will let you know how it turns out.

Sending God's hope in your lives as we all strive to follow Him in our daily walk. Life on earth is hard stuff. Rely on Him for all things. I am working on it. I send my love to you all and thank you again for your friendship over the miles and years!

In His hope,

Dana

Sunday, April 1, 2012 1:35 PM CDT

Dear family and friends,

The time passes so quickly. Those messages on FB surprise me every time. I can barely keep up with email. Thanks for your patience. OUr TV was broken for the past month and I am just starting to realize I miss it a bit. The kids and activities/volunteering here on the base fill my days with great experiences.

Karina's apt went very well last week. Her primary doctor and chief of bone marrow saw Karina for the first time since last fall. His response was priceless and a permanent memory in my mind! "Look at this well child! She looks amazing!" That is something we have not heard in 6 or 7 YEARS! Karina looked very healthy during leukemia days and because she never lost her hair, fooled her doctors. They used to say she looked too healthy to have cancer. That quickly changed. Karina's doctor was so pleased with Karina's skin condition, weight gain (we are not so happy with that) her overall strength. He saw great improvement. God is healing Karina and protecting her from the GVHD as she continues to be weaned from the immune suppressive drugs. She has one more tablet to get rid of and Dr. Walters feels like we can eliminate it next month. Oh my goodness. It makes me weak at the knees and my stomach nervous. We truly thought the day would never come and she would need these horrific medications the rest of her life. Karina remains on a very very low dose of steroids and may stay on that for a while longer. We only want to change one variable at a time. It is so minor, we are not too concerned right now. The remainder of Karina's medication diet is vitamin based. God is continuing to walk us through this life of healing.

As I look at Karina right now, she is walking around the house in her Sunday dress without assistance, climbing up on the kitchen chair sitting on her feet, now up and digging through the kitchen junk drawer, making cards for her pen pals. She is SO busy. As I type she has asked 3 times to go out and walk on the treadmill. In her next breath she says, "later we really need to shop for new shoes" and on and on. I love it! When I stop and pause to look at her and what she has been through it makes me cry. Why now do I feel so emotional? I guess because when her years of illness left us no choice but to continue pumping drugs in her etc..........in and out of the hospital it was all for the glory of seeing her healed by God's grace. He now is allowing us the joy of her healing.

Never do I let a day go by that I don't praise God for Karina's life. People here in CA continue to come to me and say what a joyful spirit she is. Somehow people know a bit or sense the journey she was on the past 7 years and see the reason that God chose to heal her. She is here for God's glory and purpose to tell others that He is Almighty and powerful. Nothing is impossible for Him.

The kids begin spring break on Good Friday. We have plans to head out of town for some special time together that week. I pray that you all can celebrate Christ's resurrection and feel refreshed that he is ALIVE, not dead in the grave.

Thank you for the tremendous outpouring of love you have given my mom. She is touched and each week tells me of another card she has received. She continues to battle the progression of ALS. The love of their marriage is the most beautiful testament of commitment, patience, kindness and sacrifice. Thank you for praying for them. My mom looks wonderful, still writes beautifully to keep in touch and we Skype weekly.

In His hope,

Dana

Sunday, February 19, 2012 10:17 PM CST

I have all good news! Karina's eye apt last week showed her eyes to be a bit better than the past few years. She was not a bit happy when they sprayed the dilation medication in her eyes but the doctor did get a good look in the back of her eyes at the cataracts that have been there for years from her long term steroid use. They are still unchanged and inoperable because they are too small. All great news.

We then headed to the main hospital for her infusion on antibodies. All went well it is just a very long and tiring day for Karina. We head back in 5 weeks. We are loving our lives with great health and less doctor visits.

The doctor reduced Karina's blood pressure medication and immune suppressive drugs! We are down to one 250 mg tablet of immune suppressive medication and this is fantastic news. We have been on a dose as high as 1500 mg a day. We will not know if her immune system and GVHD can tolerate the smaller dose. It takes about a month for her body to adapt to this and we will wait and watch her skin. A bit of redness is okay but nothing severe.

We all had a great Valentine's Day and are completely enjoying this long weekend. I find myself extremely busy being a mom and supporting Dwight with base activities, fund raising, spouses etc.........I don't want the assignment to go too fast and somehow find the busyness a perfect pace for me. I find my personal communication and chores sometimes take the backseat.

God continues to guide us in our lives. He provides in many ways. My mom continues to battle ALS and the devastating effects on her body. God has given her a strong mind. We pray for comfort for her daily at our house and for strength for my dad. She LOVES the cards and feels so touched by your kindness and loves to think back to when she met you.

Karina is off school this next week for teacher furlough days so we have some fun things planned. I look forward to the time with her. She is beading up a storm and writing to her pen pals. They are doing a card swap through the mail and she loves it. Karina is always busy doing something. She still beads and we often find her laughing. Braydin and Torin are doing great. We just registered them for the next school year at their Christian school. They are thrilled and so are we. Torin turns 10 next week which will put the kids at 10, 11 and 12 years old.

Thank you for checking in. We love and cherish your support and friendship.

In His hope,
Dana

Sunday, February 5, 2012 8:42 PM CST

Karina is having a super week. She had her cardiology workup and all is well. No matter how her heart pumps blood, we all know that her heart is perfect. It can't get much better than that! Karina is happy and healthy. We have a very long day this Thursday with an eye exam and IVIG infusion in Oakland.

We are all looking forward to Valentine's Day around here. Candy and flowers and a lot of love. I hope you all enjoy that special day with your special loved ones.

I want to share a letter with you that Torin wrote in school to the airmen here at Travis AFB. Their private school K-12 had a writing contest and Torin won for the entire elementary school......including $100. Here it is:

Dear Service Angel,

Thank you for serving our country. You protect our freedom. You protect our nation. The people here in the U.S.A. love you. I am grateful or your service and sacrifice.

You are great. You are willing to leave whom you love, risk your life for us. In Luke 1:35 God says, "The angel answered. The Holy Spirit will come on you and power of the most hight will over shadow you." I believe this is what these days are all about.

Merry Christmas! Mary and Joseph walked day and night to find an inn. Mary was going to have a baby, our Savior. Jesus was born in a stable. He did not have someone to defend him like you. He had God. You have God.

My dad is in the Air Force. His name is Dwight Sones. He is the wing commander of Travis Air Force Base. I believe in him as I believe in you.

Thank you and Merry Christmas.

Love,
Torin

We are proud of our kids and writing opens up a deeper side of them that a parent does not always get to hear in their spoken words.

i want to thank you all again for the sweet cards and notes that you have sent to my mom. She is touched personally to know that you care enough to take a few minutes to write to her. She feels the prayers that you offer on her behalf. You have reached out deeply to our family the past 7 years and touched us. Thank you for allowing us to call you friends. I think of you all frequently as pillars of support in my life. My hope is that I can somehow be your pillar as well. I love each of you.

In His hope,
Dana

Thursday, January 26, 2012 0:01 AM CST

The weeks go by like days and somehow after all these years of hard work I don't have the reserve to stay up past midnight to do personal things.........caringbridge has gotten the back seat. I am sorry about that but will try to do better.

Karina is doing great. The laughter and fun she has with her brothers is priceless. The noise level go's off the charts and we love it, rarely correct it. The growth hormone shots continue to go smoothly, her medications are all the same and we hope to reduce her immune suppression drug again soon. We have two doses that we need to slowly get rid of. Karina still is doing lots of crafts and beading jewelry. She is always busy doing something.

I received a wonderful Christmas present from Dwight this year. A trip home to Virginia to surprise my mom. I left last weekend for 5 days. Dwight and a few friends held down the fort while I was gone. It was a HUGE surprise for my mom.........everyone else knew and managed to keep it a secret. It was so fun to see her smiling face.......we all had tear filled eyes.

Thank you all for the cards and notes you have been sending my mom. She is grateful for your love and support. Many of you she knows and remembers from our many assignments. It is so neat for her to hear from you all knowing that you prayed and loved our family through a very difficult time. She is tolerating the effects of ALS gracefully. It is devastating disease that steels your bodies abilities but not your mind. She is patient in dealing every minute of each day with the side effects of her bodies weakness and inability to hold her head up. She never complains and presses forward with all the things she loves to do a bit slower that before but with as much vigor! She is amazing! Our time together was filled with quiet time together chatting, cooking, a bit of shopping and sharing memories. I had a wonderful trip and was so thankful for the time I could be with my parents.

Karina has a cardiology apt and infusion Feb 9th. I will be in touch then for an update. Thanks for checking in.

in HIs hope,
Dana

Monday, January 9, 2012 5:36 PM CST

Happy 2012! I hope this finds you all enjoying the new year. We had a very relaxing Christmas break and are now back in the routine of kids in school, homework and sports. It is great to say that Karina is doing fantastic. That has taken years to say.

We are Oakland Children's now as Karina is receiving her infusion of antibodies. All is going well. Her IgG level continues to drop very low without the drug so for now we will continue on this path.

Karina just got great news.......she has grown 2 cm. We were told not to expect growth for the first 6 months so this is a great. A great reward for all those shots she so bravely takes. We can not expect to keep that pace of growth but it is encouraging to see her body respond.

We met the third and final doctor on the bone marrow transplant team today. She is conducting research with a very experienced doctor from UC Berkeley which is just a few miles from here. She is researching graft vs. host disease and the possible benefits of diet to control GVHD. Amino acids are involved and I obviously need to read more about it before we make a decision. We would commit to a monthly blood draw for one year. That is very easy. I will keep you posted. Interestingly, I have been praying about Karina's care and the feeling of "being in medical space" lately. We have been in CA long enough for her doctors to know her. Medical space does not feel bad just a bit lonely when we are used to microscopic medical care on a regular basis. God hears even my most faint prayer and my hearts gentle concern. He CARES for his children and knows our ever need and our prayer before it leaves our hearts. I am encouraged by His ever present love. I hope you are too!

In His hope,
Dana

Friday, December 23, 2011 0:18 AM CST

Merry Christmas! Somehow, Happy Thanksgiving got away with me. I am sorry to you all for my tardy update and the many times you may have hit on the sight to check in. You all know that no news is good news for sure in our household. I am quick to holler out on caringbridge if Karina is in need of urgent prayer.

There is so much to write about. Karina is doing great. She has been on growth hormone shots for 2 months and she is certain she is growing........but no growth just yet. We suspect by spring we will see something. She bravely takes that shot every night. Karina's last infusion of antibodies went well. The doctor reduced her immune suppressive drug from 750 mg a day to 500mg. This is fantastic news and the best part is that Karina's skin condition does not seem to notice the difference! That is the big gauge to how much we can reduce. I don't see any change. Karina's next infusion is Jan 9th. This has been a wonderful break from doctors.

About 3 weeks ago my sweet Pupup died. He was 91 and a precious part of my growing up. You may remember my grandma died in June 2010. They had been married 72 years. We all miss him. That generation is gone which is the sad part to me. He was a kind and Godly man. My parents had graciously cared for my grandparent for more than a decade and their lives have drastically changed now that they are both gone.

God does have perfect timing. My mom now needs this time to care for herself. I would like you all to ask for prayer for my mom. About 2 1/2 years ago she began to have slurred speech and over several months her ability to speak clearly diminished. She has been writing all her communication down on paper or through a computerized voice. The first part of this year she was no longer able to eat to sustain her body weight and had a peg inserted into her stomach to provide adequate nutrition. All diagnosis have been ruled out by experts and the resulting diagnosis is Lou Gehrig's disease. This disease removes the ability of all the nerves in your body to function which leaves your muscles without stimulation. A few months ago she began feeling weakness in her arms, legs and now shoulders. This past week she lost neck control. She requires a padded neck cuff to hold her head up. This is a disease that steels your muscles one at a time and travels through your entire body. It is not painful but causes pain from the body not working properly. She had sores in her mouth continually, aching muscles etc........... Our family is at a devastating loss for words. My mom feels fear for the future as we all do for her. Please pray for comfort for her, calm, rest and God's grace and mercy to shine on her. I would love to flood her with cards of encouragement if you have a moment to write:
Beverly Di Tieri
3401 Avery Circle
Williamsburg, VA 23188

Dwight and the boys are doing fine. This has been the busiest season for us. Many great projects around base for me join in on, Christmas shopping, baseball in all different cities etc............We love our assignment here and find the base full of energetic people, opportunities and a lot of fun. "A lot" is the key word. We have time off together as a family after Christmas to rest and relax.................... much needed.

I pray that you all are excited about celebrating the birth of our Savior, Jesus Christ. Have a Merry Christmas and a wonderful New Year. Thank you for checking in on Karina. We are no less grateful for your prayers and love just living a medical freer life that YOU all have prayed for. We are now enjoying it! Praise God.

In His hope,
Dana

PS. New photos.

Monday, November 14, 2011 1:21 AM CST

Dear Friends and Family,

I pray you all had a nice Veteran's Day. Thank you to the men and women who served our country in the past and who are currently serving. Thank you for the sacrifices you make to allow the freedoms we so enjoy. We had a good day together. Dwight was the guest speaker at a Veteran's Day ceremony/concert in our city and the grand marshall in their parade. We all rode in a convertible and had a lot of fun. Karina is getting to experience life in a whole new way. A way we were not sure she would ever see. Our pray remains that our lives are a testimony of God's love and truth.

The weeks are flying by here at our house. I am very happy to see Oct go by. Karina is doing very well. She continues to have a lot of energy and looks good. Her skin is doing fine. Stable. It is not the whitest we have ever seen it but I think that the chemo drug treatment she just completed irritates the skin before it starts to show improvement. The growth hormone shots are going fine. They are painful for her most of the time which makes me feel bad but I think it is probably more her tender skin than the shot itself or drug. She knows the benefits but boy is that a lot to tolerate daily for years to come. She is so tough and I wish some days she did not have to be. We love her and are so happy to see her learn, busy herself around the house playing by herself in her bedroom (which she has not done since her transplant). She helps me in the kitchen with any cooking or baking and is so helpful. I love it!

We are excited for the Thanksgiving holiday coming up next week. The kids all have the entire week off and I am excited about that. We will decorate for Christmas over that weekend which is so much fun.

Have a wonderful week and thank you for checking in and praying for Karina.

In His hope,
Dana

Thursday, October 20, 2011 0:36 AM CDT

I just wanted to touch base and let you know that Karina had her third treatment on Monday. It went okay but she felt weak and wobbly after it was over. She made it through her audiology exam and to the car. She did not feel well on Tues. or today until late this afternoon. No sickness just not feeling well. I am praying that something can be done to prevent the side effects of the chemotherapy and that she can tolerate the last dose on Monday. It makes me feel uncomfortable and i am praying about this.

Yesterday was a big day for Karina. She started her growth hormone injections! We celebrated this evening for her as she has waited years. She now has to continue to be patient as it will take up to 6 months to see any growth. We pray for a touch of growth for her to see success in the daily shots. She will receive a daily shot for many years to come.......until she has stopped growing. She is so brave.

I have posted new photos. Thank you for checking in. We love to read the guestbook and it makes us miss you all. This has been a long friendship.

In His hope,
Dana

Thursday, October 6, 2011 1:04 AM CDT

Karina completed her first round of Retuximab. We battled through tons of Monday morning, I 80 traffic headed towards San Francisco which reminded us so much of traveling to Children's in DC. For those of you who know us........it is not a fond memory. The room on the bone marrow transplant unit was very nice. The unit is well equipped for the kids and parents which was such a nice treat.

Karina tolerated the treatment well and soon after the medication finished they started the IVIG. They eliminated a VERY important premedication and I caught it less than an hour into the infusion. They stopped it, administered the premedication then started the IVIG over. Karina had some blood pressure issues so the rate was slowed to a minimum and finished without incident. Praise God for this first treatment under our belt. Thank you for praying for us.

I missed my first lesson in Bible Study yesterday but what a comfort to know these ladies were praying for us. My sweet carpool friend did double duty and the boys were fine when we arrived home.

We met daddy in Napa Valley for lunch on the way home from the hospital.....he was in an all day meeting. The food was delicious and so was the company.

Karina loves school and seems to be very stimulated by her teachers ability to adjust her school work for her. She may always struggle, but somehow they are preventing this dreaded feeling from over coming Karina.

Life in CA is extremely busy for us. I will keep you updated with short and more frequent information. I will do my best. Kairna's next treatment is next Oct 10, 17 and 24th.

We are grateful for those of you who have walked on this journey for 6 1/2 years with us. Thank you and we praise God for your faithfulness.

In His hope,
Dana

Wednesday, September 28, 2011 0:41 AM CDT

I don't want the days to pass without telling you all that yesterday was a very special day for Karina. It was her 5 year anniversary of her transplant which means her 5 year cancer free day! This is a milestone in any cancer world. Karina has earned her bragging rights! We celebrated as we always do with gifts, fancy cupcakes and out to dinner at her beloved Olive Garden.

The day started like most days with our ride to school. We were greeted in the parking lot at our car by Karina's special education teacher who wished her a happy anniversary and said she made three kids of cupcakes for Karina's class to help her celebrate her day! Wow. We were so touched.

Karina is doing great. The boys are happy and doing well in school. God is working in big and small ways in our lives. I share more soon.

Thanks for checking in and always praying.

In His hope,
Dana

Monday, September 12, 2011 0:57 AM CDT

Karina is doing great except she just scared me to death. I am typing away on the computer....way too late as always and she starts to holler and yell in a very frightened way. I went running to her room and she is on the floor stuck between her nightstand and the steps to her bed. She said she was dreaming and was trying to get out of bed and slithered out and onto the floor...........no blood and nothing hurting so praise God for that.

School is going well for Karina. She is making friends and seems to be adjusted to her new environment. She went to Sunday School today which is brave for her because usually kids stare so badly it bothers her.

The boys are doing well. Back in golf lessons and soon to be back in piano as well. Karina's has her second horseback riding lesson this week and she loves it. We pray for cooler temperatures this week.

Karina's next apt in Oakland is next Monday. It feels like such a long time since our last apt and we are grateful but it makes me feel freedom like I have not felt in 6 1/2 years. Why do I feel tentative to let go of Karina's past, hesitant to make commitments to activities and others, plan fun for the future.........I am praying about finding a new peace in our lives with a semi-healthy Karina. It almost feels like Satan is telling me no, that will never happen because Karina is still sick. The scares in my mind of memories from her illnesses linger with a familiarness that I can't seem to shake. Rightfully so. Somehow I hold the past as a reality for what I think could continue to be our future. I am working on this in my life as I find freedom in what God has in store and not what I think may happen in the future. He has mightily protected Karina beyond my imagination. Every inch of Karina is beautifully made by our creator and we pray others see Him in her.

Our family loves CA and Travis AFB. Dwight is working so very hard but with much purpose and satisfaction. We are all living a dream in many ways. We pray we are a testimony for Him through the opportunities we have.

This weekend we attended a gala in Sacramento with crews and support staff for an air show that was happening. We met one of the 5 remaining Doolittle Tokyo Raiders. We live on Doolittle Court, the Air Museum here at Travis is names Gen. Doolittle etc......this gentleman is 91 y/o and lives in Washington State. He is a legacy and stands for bravery.

Today Dwight was honored to speak at the State Capital Building in Sacramento to honor those who died in 9/11, thank the military for defending our country and their families who support them and to recognize the many who have given the ultimate sacrifice on behalf of our freedom. Their were many flags waving, Gold Star moms present, veterans standing proud, patriotic clothing being worn and powerful words spoken by each guest speaker. We left the event feeling renewed energy to continue serving humbly and with grateful hearts that we live in America. We felt sadness for so many who lost loved ones on 9/11 and in the war since then. I hope you all had a good day today remembering and honoring not the attacks on the US but our response as a nation. We can all be proud.

NEW PHOTOS!

In His hope,
Dana

Wednesday, August 31, 2011 11:22 PM CDT

All is super here in CA. The days go by so quickly that I am getting behind on updating you. Karina is doing well in school and the staff has figured out her needs beautifully. She is happy and cared for........that makes mommy and daddy happy.

Karina's big news is that she turns 11 years old on Saturday. She is receiving a day in San Francisco and a budget for purchasing beads in Chinatown. I hope I get a budget too!!!

Karina met one of her new doctors (not her primary doctor) last Monday and the physician's assistant who was very helpful for paperwork details etc.......Karina was there for an antibody infusion that they ran in one day instead of two. By the end she felt pretty bad but it was then over. I pray that she tolerates this every month to allow it to be done in one trip to Oakland. The traffic was easy getting into Oakland but a bear to get home. The bridge is $5, M & M's 1.35 and parking $7. Not Delaware that is for sure.......no more free valet parking for us!!

The new team of doctors would like to make a few changes in Karina's medication but we will do that slowly and after much consideration on my part. I am in close touch with Dr. Kolb and value his knowledge so much. What a blessing that he allows us to continue to seek him for questions and thoughts. The new team did say that normally kids on drugs like Karina do not attend school............OMG but she did it all last year and only missed 2 days for illness. We got a green light after that track record. Can you imagine Karina being kept home..................? Human cruelty. She deserves more. I will keep you informed as we see them more in the future.

The boys are doing very well. They BOTH love their private school. Praise God for this plan that He has for them. Baseball for Braydin is getting very busy. We head out of town Sat and Sun this weekend and next.

I find my days very full with volunteer work here on base, attending events etc.....I love it all. There is much to manage with the house, chores, medical things and schedules but I really enjoy it all even though there is little white space on my calendar.

Today Dwight and I celebrated our 20 year anniversary. Great milestone with many years of memories yet to come.

Thank you for checking in and praying for Karina. We love to see God working in her life, we love to answer kids questions about Karina and why she looks like she does etc............God's name and His miracles flow right off our tongues. We pray that He is glorified in all we do, to all who meet Karina and that hearts will be softened to His goodness.

In His hope,

Dana

Saturday, August 13, 2011 0:48 AM CDT

Thank you for your patience over the past month. It has been a great time of transition, a lot of hard work and many answered prayers as God has shown himself to us again and again.

I left Dover with the kids June 20th. We were picked up by a dear old friend and swept through downtown San Francisco for dinner and a drive over the Golden Gate headed north east to Travis. We arrived to a fanfare of activity.......our name on the electronic marquis, friends at our hotel room waiting to hug our necks along with welcome baskets filled with goodies and a dozen cards from leaders around the base. Overwhelming to say it mildly. No sneaking into this base unnoticed.

My parents and the kids and I received the truck the next morning to begin the weeklong process of unpacking and organizing the house. My dad painted the walls to make it look like home. We are all settled in now.
Dwight arrived last Monday and took command last Friday. We were overwhelmed by the support we had with our parents both in attendance, our dear friends Mark and Traca Maestas and Hubert and Shirley Toney as well as my uncle Sonny and Annette. We had a wonderful time with them and only wished we weren't so busy while they were here. I think they may be back.........hint hint! Dwight has been a busy man for a week and loves his job. The people on base and in town are outstanding. They call it Team Travis for a reason.

I have a few God stories for you but will share one now. We climbed over a sweet couple in church to sit down last Sunday. At the end of the service the lady stopped me and said she knew who I was....(the new commanders wife from the Air Force Base) but Dwight was not with us. Hum? She introduced herself and said she wanted to give me her business card.........she is the secretary for the superintendent of the unified school district in this area. She said if there is anything I needed for Karina's education to call her immediately and she would take care of it. Wow. Now that is not coincidence. God placed us in that row at church last week.

The majority of my week this week has been spent enrolling the boys in private school. We found a fantastic Christian School for them and the process was rather lengthy and detailed. Testing, physicals, family interview, paperwork, conduct letter from old school, essay from Braydin and one from me for each boy, etc........Now for school supplies and uniforms. This weekend will be busy. Karina will attend the public school on base. Another God story.......tonight at 7:30 pm the special education coordinator called to let me know she did not forget about Karina and has organized a meeting for Karina on Tues. morning......school begins on Wed. I feel so blessed as I thought we had fallen through the cracks. I am praying about her future teacher and education.........God has it all.
School begins on Wed. for Karina and the following Monday for the boys.

Karina will meet her new doctors on Monday for a physical and history interview. Tuesday she will receive her monthly antibody infusion. Two long days ahead for her and then off to school. Please pray for her this next week as she faces so many changes and challenges.

Today we went to the Jelly Belly factory for a tour.........amazing and tasty. We found a rock store with really neat things. We have a pretty quiet weekend ahead thank goodness. This mommy needs to be a mommy. The boys have adjusted well and who wouldn't with a zillion kids in the neighborhood. We live up a hill and the top of our street is the flat culdisac where everyone congregates for all ballgames. Great kids, fantastic neighborhood and a blessing to us. We all feel so happy.

Thank you for your patience during our move. It has been extremely busy for me as I am meeting folks, attending meetings and beginning my volunteer work.

Have a wonderful weekend and I pray you are all well and enjoying summer. Thanks for checking in and praying Karina's life into a place that God would have her.

In His hope,
Dana

Saturday, July 23, 2011 0:34 AM CDT

Dear Friends and Family,

I am writing you from sunny California. It has been a few very busy weeks. I will back up a fill you in. I took the kids to camp (which ended up being 4 1/2 hours from home.........too far for this mommy) on a Monday and by Wednesday evening Karina was very sick. The camp called me and told me that she needed to be taken to a local hospital, 50 miles away. I met Karina, her nurse which was from DuPont and Dr. Kolb at the emergency room in northern NJ at 11:30 that night. It ended up being a stress response to all the excitement at camp, requiring a stress dose of steroids (the good kind). The uncontrolled vomiting stopped and she seemed to feel a lot better.

Karina and I then headed to a local hotel about 1:30 am and had a good night's sleep before heading back out to camp for the boys. The kids had fun while they were there but we were all glad to have the excessive driving and traffic behind us. When we arrived home the house was packed on the 18 wheeler truck and ready to leave for CA.

Dwight left last Friday for OK for flight training. The kids and I stayed in a hotel from Friday till this past Wed. in Dover. We flew to CA with my parents and accepted our household goods the very next day. So today was day 2 of unpacking. The cable man arrived this morning and got us all hooked up which I am grateful for............I definitely lack in the hook up area. I do well plugging into outlets.

The kids have made a few friends. Braydin is hunting for a friend his age and I will pray about that. My mom and dad and I are unpacking the house and it is coming along nicely. We will spend our first night there tomorrow. We hope to be all done when Dwight arrives. The house is beautiful. Torin got the biggest bedroom and Karina the smallest this time. She happily gave that up for him........sweet sister.

Karina's medical care will be transferred to Oakland Children's Hospital. We will probably not see her doctor for a few weeks unless she becomes ill. The kids travelled well on the plane and Karina walked the entire way through both airports..........it was a ton of walking and she motored along so strong with her walker. I am praying for God's hedge of protection around her as she has been exposed to many germs the past 3 days. Our house is spotlessly clean but moving in creates a lot of dirt. Karina is so happy and the boys seem to be doing fine. They will be happier when Dwight gets here.

We live in a beautiful part of CA. There is a lot to do within an hour of us in all directions. We hope to explore next week a little. Can't be all work and no play for my sweet parents.

Thank you for checking in, praying and caring about Karina. Our lives are richly blessed by your words of encouragement and faith in God's perfect plan.

Our new address:
415 Doolittle Court
Travis AFB, CA 94535

In His hope,
Dana

Friday, July 8, 2011 9:22 PM CDT

Well, the time has come to leave Dover, DE. Our packers come on Monday and the moving truck will be on its way across the country next Friday. The kids are excited and Dwight and I are still in a bit of shock. We are currently in St Louis area receiving training for Dwight's new job. It has been a great week, learning, relaxing, seeing friends and regrouping together. We fly out very early tomorrow morning. Back to reality. :)

Karina is doing very well. She has chatted on the phone with great expression, stories and ideas. Her Omi and Bubba have taken great care of the kids this week. We are grateful as I would not be able to support Dwight and the AF in this capacity without both of our parents.

Karina's endocrinologist does not want to do the test for growth hormone or begin growth hormones..........passing the job onto the next doctor in CA. Disappointing but reality. God has a reason and we rest in that.

Leaving Dover will be an emotional one. This two year chapter in our lives will forever be a permanent memory of Karina's life.....physical healing, intense illness, mental development, making friends, learning to be a 10 year old girl, laughing again, developing an unbreakable sibling bond, independence, courage, trust in medical staff, many drug trials, GVHD healing, loving neighbors and friends, social acceptance, physical strength, spiritual maturity, deepened faith, choosing daily positive attitudes and personality and the list goes on...........

Our chapter in Dover has been our highest and lowest points in Karina's 6 1/2 years of illness. The life support and ICU brought us to our human brink and the beautiful little girl we now have is stronger and healthier than we have ever known! God is behind every ounce of her life. She has lead others to Christ through her presence. God has blessed our family with a miracle that others seem to draw encouragement from. Karina wears a badge of courage that God chose to give her. She wears it with ease, no anger, no regrets and cheerfulness for tomorrow. Karina's seems to see her future as tomorrow and no further, just as God intends. Don't worry about tomorrow...........God has it, right?

The kids and I will fly out July 20th from DC. My parents will be on the same flight. We hope to meet our household goods within a week of arriving in CA but no guarantees. We have warm welcomes coming from our new neighbors and friends in CA, lending a car, accepting mail and ready with open arms. We are grateful beyond words.

We will have Karina's last infusion at DuPont the 18 and 19th. There will be many tears.......even as I type. The people at that facility are like no other.

Pray for us this week, if you would. All three kids will be going to camp........a camp for kids with cancer/treatment and their siblings. I am nervous.......It is 137 miles from our home!!! It is only 5 days and I know they will love it. Karina's doctor will be there half the time and a sweet nurse from DuPont will be there the whole week. She will be fine but still...........

Thank you for the many prayers, loving words and support. Even here in St Louis I am seeing old friends who still care enough to follow. That warms my heart and I pray that you feel encouraged, your faith strengthened and your love for Christ growing as you follow our journey.

I will be in touch again as we pack up and get on our way to CA.

In His hope,
Dana

Saturday, June 25, 2011 9:39 PM CDT

I am a tad embarrassed to see Easter photos on the photo page. New photos are posted!

So much has happened since my last post on the 14th. Dwight returned home on the 15th which was a great reunion. He looks the same and has fit right back into our routine so nicely. It has to be a huge adjustment for him (and a little for us, too)......to constant noise, activities, laundry, cleaning, watering the lawn, questions and complete lack of PEACE in the house. Somehow he loves this life more than living alone........thank goodness.!!! He is a good man.....make that a great man.

Tuesday we went to NIH and the endocrinologist agrees that Karina is ready for the testing required to check for sufficient growth hormone in her body. We are now waiting on a date to have that testing done at DuPont and for her to be followed with our endo there. The two doctors are in communication and will share the results of Karina's blood work, hand Xray and doctor exam from NIH. Our time for the testing is getting very short. We see the endo doctor this Friday and hope to schedule the test soon after. The test involves a drug to stimulate the pituitary gland to produce growth hormone, then the blood levels are drawn from an IV every 30 minutes for levels. It will be done in the inpatient side of the hospital but should take about half a day and we will head home. The drug can drive blood pressure down which can be an issue for Karina if this happens. We pray not.

After our NIH visit we headed south to our favorite lake spot....Lake Anna thanks to our precious friends, the Mleziva's. Our families joined us for a visit and we had a great time together. We arrived home yesterday, unpacked and head back out tomorrow to Fenwick Island which is the north part of Ocean City, MD. The kids love the blue crabs at the local ponds and the memories we have made there in the past. This trip will be so different.........Karina is well!!!! Praise God for her healing.

As we arrived at NIH we realized we may have trouble getting through security with 5 suitcases, a cooler, fishing poles, food and ..........................fireworks!!! All lake vacations require fireworks, right? Have you ever tried getting through security in the DC area with explosives. It was not pretty! Aunt Robin and Uncle Newlin saved the day and the doctors apt to say the least. The fireworks looked great at the lake after all! As we got to NIH I realized I was missing a very special bracelet that Dwight had given me in 2006. I was heart sick about it throughout the week and arrived home yesterday scouring the house for it. Dwight and I found it in a trash bag in our dumpster outside......it had come unhooked. I nearly cried with joy.

Braydin's travel baseball team had a farewell party for him today! What a special group of families we have been associated with. We were so surprised to see gifts, cake and many kind words. Braydin found a bond with these kids and an easy friendship that he will miss. He will play one more game with them next Sat in NJ. (before we head to the Gettis's :) No worries Kathy, we would not miss the party for anything!)

Karina is great! You can see her skin in the photos. We remain on 2.5 mg of steroids every other day. She has dry and itchy skin but we are controlling it with aquaphor and claritin. She is so happy. Still gets tired, loves to take two baths a day, sleeps 12 hours a day and is getting funnier and funnier.

We are living life so normal compared to the past 6 years. We are quickly reminded how fast our lives can change as we think back to many times Karina has gotten sick. We are thankful and never take for granted the healing God has provided. Karina's quality of life is so good and we all know it. We love every ounce of her sweetness........and sassiness, too!

You can see in the new photos for yourselves. Thank you for praying for Karina and our family. The gratitude is not easy to put into words.

In His hope,
Dana

Tuesday, June 14, 2011 1:22 PM CDT

Oh me oh my! We are on a roller coaster of activities and emotions at our house. Dwight returns tomorrow evening in BWI. We are so excited, tired and ready for daddy to be home. School gets out tomorrow. One teacher gift still needs to be purchased. Braydin developed a violent stomach bug yesterday, home today which breaks my heart as Karina and I are at DuPont finishing her antibody infusion. Torin was "done" about two weeks ago and has held it together, barely, until the end. In his young 9 years he has been without a parent more than we would like to think about.

Karina is doing well. Her cut on her face healed well. She is down to 2.5 mg of prednisone every other day. Her doctor is pleased. Now, we just have to convince the endocrinologist at NIH next week that she is ready to begin growth hormones. She desperately wants to and needs to grow. From that apt we head to Lake Anna for much needed rest and relaxation. We then will be home a day to regroup and head to the beach for a week. These are forced and needed vacations.

The move plans are underway. The packers start July 11 while the kids are at camp. They will come home to a hotel room and a flight to CA. Yahoo!

We have travelled the past two weekends for Braydin's travel baseball team. Last Sunday we were in NJ and he hit his first homerun. What a special time for him. Dwight happened to be on the phone and heard the whole thing including Karina cheering him on! A dad spent some time in the woods retrieving that special ball which is now about to go it a special little case with an engraved plaque. Great memories.

God continues to walk in our lives, paving paths, providing protection, enabling our family to grow and mature. He is evident as we pray and he answers our prayers.

Thank you for checking in. Please pray for Karina's apt at NIH. We are hopeful. Dwight will have some transition returning home, preparing for our move and trying to gain rest and energy for the next job.

Dwight's change of command ceremony was yesterday where he officially gave command to the next person. High and low emotions as he cherished his last year in Kyrgyzstan. LIfe changing emotions. He spoke half of his closing remarks in Russian. Who knew? Amazing, truly amazing.

Love to each of you and thank you for loving each of us.

Dana

Saturday, May 28, 2011 10:23 PM CDT

Karina had a good week. She seemed to have regained some energy after being very tired last week. We spent two days at DuPont receiving her antibody infusion. It went very well and without a hitch. We then went up the next day for her breathing treatment medication and were able to see her doctor. It was a blessing that we did not have to wait until June for him to see her skin. He really likes what he sees and decided to continue the reduction in steroid dose. I am asking for two specific prayer requests. One is for Karina's skin to tolerate the very low dose of steroids, 5 mg alternating with 2/5 mg and these doses are every other day. She has never been on this low of a dose. Two is for the endocrinology doctor at NIH to be willing to allow Karina to begin growth hormone therapy. We see her June 21. This is Karina's biggest priority and I would have to agree. The gap between her friends mentally and physically is widening. It is time to catch her up a bit.

Thank you for checking in. Dwight returns home in 2 1/2 weeks. We are all excited for many reasons. Everyone is a year older, including me. Things have changed a bit around the house, new responsibilities, new rules and growth for everyone. I ask for prayer as we adjust to being a family again and I relinquish some of the independent decision making. We can now share the job of parenting and I look forward to that. Thank you for checking in. God has provide for us in every way. His presence is real in our house and we praise God daily for the provision in our lives.

I don't ask often enough for prayer for our cancer fighting friends. Our world is not far from these precious warriors and I never want to forget them.

We are keenly aware of the meaning of Memorial Day and remember the thousands who fought and lost their lives in order for our country to live in freedom. Thank you.

In His hope,
Dana

Monday, May 16, 2011 10:38 PM CDT

Hello faithful and patient friends! We are counting down the last four weeks that Dwight is gone. May is a very hectic month for us year after year. This month has proven the same. Karina had a great weekend with my parents and friends while I took a much needed getaway to NC for a wedding. Being away puts me farther and farther behind but well worth the investment. :)

Karina facial scar is healing very well. The scar is visible but very faint. We feel so blessed by the healing that we were unsure was possible with her immune system and damaged skin. She is very happy with the results and that is what matters.

Karina's skin continues to show great strides of improvement. I really feel certain that the 4 week treatment of Retuximab has assisted us in lowering Karina's steroids. She is at 5 mg of predisone every other day and looks great. I would say she is ready to go lower. Next week we go in for the two days of antibody infusion and Dr. Kolb will get a look. I have emailed him the success that I see. God is choosing to heal Karina's skin cell by cell and in His timing. We are grateful and give Him the glory for carrying Karina this far into healing. She continues to be a blessing to our family with laughs, whit and sassiness. Her smile gets bigger and bigger and is just beautiful.

Karina's mental abilities have improved so much this past year. She can now tell me a funny story from school, think of catchy phrases (like I have something up my sleeve for your birthday) and follow conversations. She also gets bored which makes me busy to keep her occupied. She is working on a bead order this week making 10 keychains to be mailed to Alaska by the end of the week. She loves purpose and a project. She has state testing tomorrow which is very difficult. She struggles in school and that frustrates her but yet she still loves to be at school.

I am admittedly tired physically after this past year but so excited to have lived through a year of God's faithful care for our family. He has watched our small and large needs be given to him and we have patiently waited for His answers. He has guided us every day.

In His hope,

Dana

Monday, May 2, 2011 9:12 PM CDT

We have had a very eventful weekend. Friday night at 4 am Karina and I got up to use the restroom and when she got back in her room fell on the wood step stool that leads to her bed. She cut her face badly under her left eye, on the cheekbone.

It was very upsetting and scary to see the blood all over her and the gauge out of her face but it stopped bleeding quickly, we iced it and slept in late Sat morning. By noon the wound was not looking good. We headed to DuPont and a plastic surgeon was called in to do surgery that night. She went under anesthesia and he spent nearly two hours carefully repairing her wound.

She came out by 11:30 pm and we stayed the night in the bone marrow transplant unit on IV antibiotics and IV hydrocortisone. She has internal stitches and a large steristrip on top. We will see how long we can keep the grease away from the strip.......we have already repaired it twice. She went to school a bit late today and was very tired after her brothers baseball game this evening.

We have four nights of ball games and a very busy weekend ahead. I think I am going to need a babysitter for her this week to allow her earlier bed times. She is so sweet about it but very tired. It is not fare to her to be exhausted all week.

We had outstanding care at DuPont. I simply have never experienced such consistent quality care, truly above just quality care. I have raved about Dr. Kolb and the nursing staff that we know so well but to see it in the ER down to the surgeon is amazing. This doctor could have quickly stitched her up in the ER and had a great Saturday evening but he chose to spend a late evening in the OR. BTW, Dr. Kolb was chosen as the Doctor of the Year for the entire hospital. Well deserved. I may have mentioned this before but it supports what we have felt about him from the first time we met him.

Karina is doing fine. We expect to have the stitches in for 3 weeks as she slowly heals. I suspect there will be little scaring as the plastic surgeon is known for his impeccable talent.

God provided calm for us, caring staff, bravery for Karina as she dealt with fear, being put to sleep (again), pain and uncertainty. We are back on track with life after a wonderful spring break. We can't forget all those wonderful memories.

Dwight is doing well. Down to the 6 week countdown. He is tired and excited to finish up. I am tired myself. Is that fare to say? :) Braydin's birthday is this weekend. We are happy to be celebrating his 12th!

Blessings to you all as you walk in faith, live for Him and rejoice in the small things in life. There are many, we just have to look for them. I love my friend that looks for a way to be an angel to someone else everyday and thanks the person that is the angel in her life each day. I am striving to do both.

Karina's skin is looking great. Very stable, whiter that we have seen in a long time. Praise God.......we might be onto something here after the 4 week treatment. Be anxious for nothing...........

Thanks for checking in.

In His hope,

Dana

Monday, April 25, 2011 10:29 PM CDT

Happy Easter! We are at my parents enjoying the wonderful warm weather and family time. Church, cousins, fishing, ice cream, Grammies' home cooking, friends, go carts, shopping etc......we are having a great time.

Karina did well last week with the infusion of antibodies. Her blood pressure was high when we left but seems to back to normal. She is so happy to be enjoying life and is spunky with a bit of sassiness. I keep asking Dr. Kolb for a drug to help with that. He has nothing to offer me.........

Dwight is working very hard which makes me feel bad as we are here having fun. His fun begins when he arrives home in June. Our move will take place somewhere around the middle of July.

Thank you for praying for Karina and the others I have asked prayer for. Tonight a precious lady named Jane needs our prayers and my friend Kim. Thank you for your messages on the guestbook and for your love and support. I would love to pray for your request.......please leave them on the guestbook or email me: dana.sones@me.com

In His hope,
Dana

Saturday, April 16, 2011 12:57 AM CDT

I need to keep you all informed a bit better. I am one busy mom as all of us mommy's know. We are all well. Baseball is in full swing, enough said.

Karina had two apts this week and both went well. We were following up on a cardiology apt that showed a heart valve issue a few months ago. That seems to be gone and her echo and EKG were both normal. We needed to hear that great news. Yesterday we went the ophthalmologist and Karina continues to have cataracts that are unchanged and fair vision. Her doctor said she can drive with her vision but suggested she not do that. :) One day I suspect she will need glasses but for now she is okay. We will be back to DuPont on Monday and Tuesday for her monthly infusion of antibodies. The hour drive each way makes for long days for her apts but we continue to LOVE the staff at DuPont. It is an amazing place, filled with knowledgeable and helpful staff.

Last Saturday Karina had the opportunity to say the pledge of allegiance at the opening ceremony for the little league in our area. There were a few thousand folks there with 930 players. Braydin and Torin stood with her at the pitchers mound as she recited the pledge. The directors at the field coordinated a Skype session so that Dwight could see it live. She was asked because the thought she fit the description of their 50 year anniversary: Building Courage one Bat at a Time. I agree. As you all know from the years of reading this site that Karina has been a great baseball sister! Sitting through many games with the car running she never complained about attending. it was a very special day for all of us and an honor and thrill to see Karina say the Pledge.

We are counting down Dwight's return. Two months from today he should be home. We have a very busy summer with a touch of vacation, flight training for Dwight and the move. Dwight will begin his new job on August 5th. School begins in CA on Aug 16th. This gives my kids a short summer so we are looking at ways to make it fun and enjoy being together before the move.

New photos, finally.

Thank you for praying and for your love and support. We continually feel God's presence in our lives. We are excited for spring break and Easter.

In His hope,

Dana

Thursday, April 7, 2011 10:48 PM CDT

Karina finished her treatment 2 1/2 weeks ago. Where has the time gone? I am out of town this week in training which is preparing me for Dwight's new job. My in-laws and parents have split the week to allow me to be away. I am grateful. The course is very busy and filled with information. I have enjoyed seeing friends and being in a beautiful and warmer climate. The kids are doing fine. We have all been very busy since treatment ended.

Karina has taken another step in steroid reduction. So far so good. Her skin remains unaffected. The four week treatment will be considered successful if we can continue to reduce Karina's steroid dose with her skin holding steady. It may not get "white" but steroid reduction is our goal. We are getting closer to growth hormones which is a very big priority for us. I will let you know how we progress in the next few weeks. The next several weeks is going to be very important.

We are grateful for Karina's life and the opportunities she has been provided to live life and we pray everyday has been a living testimony of Christ love for us and God's healing power.

In His hope,
Dana

Tuesday, March 22, 2011 9:50 PM CDT

Karina is finished! The four rounds of rituximab are complete and now we will wait a month and see if her skin condition improves. Thank you for your prayers as the past two days have been long and grueling. I felt a bit uncomfortable with the volume of medicine Karina was to receive the past two days.......15 hours of total infusion from Monday am to Tues am. She tolerated it well and was closely monitored for vital sign changes that would tell us she is not tolerating it. We left DuPont today with a few stops on the way home, met the boys after school, did homework and off to baseball this evening. She really is amazing. Today she was a happy as ever and full of energy.

Thank you for praying about this treatment with us. I truly felt your prayers as the time passed and the drip of the IV continued. We are grateful. God is good, all the time. I met an incredible dad (and his wife last week) of a 18 month old boy with a vicious type of leukemia. They are just 3 months in to treatment and his attitude, faith in God and perspective on his son's condition was astounding. We enjoyed sharing our children's journeys and what it is teaching us as parents about our spiritual walk and God's eternal plan being greater than our own. This was a rare experience for me and refreshingly encouraging.

The boys are fine and had a great sleep over last night with our friends. We would not have been able to do this treatment without the Krawietz. Precious family and generous in every way. Our neighbors are all willing to help and do at the drop of a hat. This year without Dwight has been tolerable because of the stability Dover has offered our family.

Thanks for checking in. My anxious heart was calmed because of your prayers. I can then tell this to Karina and she observes my attitude and often adopts it for herself. You are building our faith.

In His hope,
Dana

Friday, March 18, 2011 10:05 PM CDT

I am sorry for the days passing without an update on Karina's last treatment. We went in Monday for the 7 hour infusion and all went well. Karina tolerates the treatment but is very tired for days to follow. I suspect that the cumulative effect of 3 doses is catching up with her. It is a chemotherapy drug but in a lower dose. She is in sweet spirits but tired. Somehow we will need to get a bit of extra rest this weekend and while there for the overnight stay on Monday and Tuesday. I am a bit concerned how all of this will go. She will receive 4 hours of antibodies, 7 hours of rituximab and 4 more hours of antibodies. Please pray that her body can take all of this and that the doctor and nurses use their best judgement while administrating it.

School went fine this week but her teachers noticed the great fatigue. One more dose to go............The boys are doing great. Baseball has started and so has the crazy schedule. We head out of town for Braydin's travel team this weekend. I am excited to be working on a school science fair for Braydin's school. My volunteer position will end on the 31st which I will miss. I do need the spare time for other things right now. Dwight is doing great. I am about to submit my third devotion to the online site for mothers of critically ill children, Until Heaven Ministries.

Thank you for checking in and always finding time to pray for Karina. Please give blood if you have an opportunity.

In His hope,
Dana

Tuesday, March 8, 2011 7:05 AM CST

Karina received her second treatment yesterday without incident. We arrived a bit late after a traffic jam.......who knew there was traffic in DE. Brought back memories of DC. The infusion lasted 7 hours and we were home at 8:45 pm last night. The IV went in the first try and in Karina's left hand which is a big deal for her so she has the ability tot use her right hand for crafts etc.......We kept busy and enjoyed visiting with her doctor and staff. There is something so special about each one of them and they genuinely love and care about their patients and families. Precious people and leaving DuPont will be the hardest part of our move to CA. Karina made a dessert in the kitchen for them and left it in their breakroom.

Today we are tired and are catching up on sleep for Karina and errands for me. Next Monday will be treatment three and we are excited to press forward. Karina had no reactions to this treatment at this point and we pray the drug continues to do its job without harm to Karina.

Torin had a great 9th birthday. Braydin started track and field for the middle school. Little League baseball starts in a month and travel baseball is in full swing. We head to a double headed in south NJ next week. Karina is a great baseball sister thank goodness. The boys actually love their piano adventures and are anxiously awaiting golfers out back to get their golf ball sales started for the spring season.

We appreciate your love and support, prayers and faithfulness to Karina and our family. We feel blessed by each of you. You have made a difference in our lives and can also make a difference in others. Please consider giving blood if you have the chance in the future. You can also add your name to the bone marrow donor registry by a simple swab in your mouth and filling out a form. You can check online for where to do both in your area.

Dwight is doing well. We were hoping to see him for a quick visit in April but that is not going to work out so we anxiously await June 11 for his final return. Our troops are working tirelessly for our freedom. Dwight mentions care packages and gestures made by American's to support the morale of those serving. It is encouraging and heart felt to those receiving those letters and care packages. We give of ourselves in many ways and I am glad God made us in a way that allows us to show Christ's love to others.

Have a wonderful week. Thank you for praying for our friends battling cancer. I leave DuPont a thankful parent. Karina's healing has been in God's plan and I intend to live each day thankful for the life God has given her.

In HIs hope,
Dana

Tuesday, March 1, 2011 8:46 AM CST

Greetings from DuPont. It has been a successful stay and Karina tolerated the infusion of Rituximab very well. The IV went in on the second try and the treatment ended about 8 pm last night. They gave her a rest for a few hours then infused a half dose of antibodies. Her level remains rock bottom low, the rituximab will prevent her body from making its own antibodies but she is not making it on her own anyway. We will come back the next three Mondays for the rest of the doses. On the last dose we will stay overnight for a double dose of antibodies to follow.

We felt the many prayers that were offered for Karina. We were assigned our favorite nurse both days and the best night nurse ever! There is a new nurse training on the unit and she was also with us all day yesterday. She worked in the adult bone marrow transplant world for four years and has administered Rituximab many times. She shared the great results she saw and told us the benefits are not evident until several weeks after the last dose is given.

Dr. Kolb is pleased Karina did not have a reaction to the new drug. He is excited to know we may be onto something effective in our fight to win over GVHD.

Thank you for the prayers, messages and encouragement. God's presence was nearly tangible........

In His hope,
Dana

Thursday, February 24, 2011 11:27 AM CST

Karina is doing well. We decided to begin the new treatment starting this Monday. It will be infused every Monday for the next four weeks. We will be on the inpatient side each dose and kept overnight for at least two of the four treatments to allow an IVIG infusion following. The challenge will be finding a healthy vein each week that can tolerate/withstand a 6-7 hour infusion of chemotherapy. It is a bit hard to write that word. The drug is called Retuximab.

Karina's life is so stable and her quality of life is the best it has ever been. Of course my greatest concern is that we rock her boat. Her body appears stable from the outside but we know all too well the internal damage her body has undergone over the past six years can quickly change paths.

Thank you for your prayers as we move forward with the knowledge we have trying to heal Karina's skin and ultimately get her off steroids. Her steroid taper is going very well. We are all amazed that her skin is stable despite the lower doses. Maybe in combination with this drug we will allow her body to be steroid free and begin the recovery phase.

Karina's attitude played a role in this decision. Praise God she is well enough and mentally capable to understand the risks and benefits to her body. Karina is excited to begin, Karina asked for two things, the best IV therapists in the building (we know them by name) and a treat at the gift shop after each infusion, which I can happily provide. Karina is brave, trusting and wise. She wants to get better and knows there are brilliant doctors that are using their God given minds to create new treatment options. I am learning each day from Karina.

Please remember our warrior friends who continue to fight cancer. Zach earned his wings a few weeks ago, Taylor is back in the fight after neuroblastoma, leukemia and now neuroblastoma again, Scott got clear biopsy results recently but lives on the edge of his cancer trying to return, Emory is perfectly healthy after 3 relapses and transplants, Jane is battling for a second time with faith and hope, optimism and love for each day, Jason is out of options.........the list goes on and on. It is our world and one that could leave us living in fear. We choose to not be fearful but faithful to believe in God's perfect plan. Thank you for being in touch on the guestbook. Your words of encouragement mean the world to us. Somehow it brings our many miles apart closer together. Thank you for sharing your lives with us and letting us be a part of yours.

Several years ago I met a precious mom of a sweet boy named Brodie. Brodie was cured of cancer as a toddler, filled with tumors all over his body. He is a living example of the miracles we see here on earth. Brodie's mom began a website for mom's of critically ill children to offer them a resource for hope in their lives as they care for their children. Michelle is following God's desire for her life to share her faith through trials of the past and her continual walk with Him. She asked me to join her. The website has a new devotion each Monday. I contribute once a month. www.untilheavenministries.wordpress.com.

In His hope,
Dana

Wednesday, February 16, 2011 7:12 PM CST

When life seems to be sailing along as straight as an arrow we seem to hit a fork in the road. Are we content with Karina's current health? Are we standing on faith that God will take away her graft vs. host disease in His time? Do we feel anxious to cure her skin situation? Are we grasping in mid air for a solution? Are we putting Karina at risk again with another treatment? A million questions are running through my head tonight and Praise God for his desire to know our burdens, take them and the ability of the Holy Spirit to speak to our hearts.

Karina received an antibody infusion yesterday and today which went well. She continues to fill her Beads of Courage necklace longer and longer. She is so proud of that necklace which is pushing 20 feel long filled with colorful beads representing the many treatments that she has endured.

Dr. Kolb presented Karina to a team of doctors from different institutions around the country asking for their input on any possible treatments for Karina's skin. The consensus is to try a drug that is a manmade protein with little to no side effect. It is an infusion one time a week for four weeks. (I have a precious babysitter that is willing to stay the night while we are gone for at least the first treatment and maybe all of them). The first treatment is an overnight stay to ensure no side effects. It kills all her B-cells in her blood which she has few of anyway. The GVHD is a T-cell problem but by killing the B-cells the doctors feel it may be effective as the B-cells initiate immune responses which "stir-up" the T- cells. Patients receiving this drug are also treated with infusions of IVIG which is the antibody infusion that she is already receiving. Those infusions would have to increase.

So, the questions remain in our hearts and minds tonight? Do we want to see Karina undergo another treatment that really has no proof of working (which has been my question for months as Dr. Kolb mentioned this many months ago) or do we continue to wait for the GVHD to die off on its own? The goal of any treatment is to not to make pretty white skin but to get Karina off steroids, find stability in her skin and begin growth hormones to allow her as many years as we can of hormones for full growth potential. Four treatments in four weeks is tolerable. The risks appear very low. May I ask you to pray about this as Dwight and I are. We need strong, clear, firm and concise answers in our hearts that only God can provide. Please pray for Karina and her hearts desire as she has a BIG say in this decision.

We have found GREAT contentment in our lives. Karina deserves the wonderful life she has! We pray for God's will in all aspects of our lives.

Several years ago I met a precious mom of a sweet boy named Brodie. Brodie was cured of cancer as a toddler, filled with tumors all over his body. He is a living example of the miracles we see here on earth. Brodie's mom began a website for mom's of critically ill children to offer them a resource for hope in their lives as they care for their children. Michelle is following God's desire for her life to share her faith through trials of the past and her continual walk with Him. She asked me to join her. The website has a new devotion each Monday. I contribute once a month. www.untilheavenministries.wordpress.com.

In His hope,
Dana

Saturday, February 5, 2011 9:58 PM CST

Karina is doing great. She continues to attend school full time and happily I might add. Her skin is unchanged and maybe even a bit better with this lower dose of steroids. We head back to DuPont next week after Valentine's Day and will begin another steroid reduction after Dr. Kolb sees her. Dr. Kolb will present Karina's skin photos on a live multi-institutional website with other bone marrow transplant doctors from around the nation. We are all eager to see if someone has any other ideas for Karina's graft vs. host disease.

My heart is heavy tonight as our friend Zach is preparing to leave this earth. He is Karina's friend at DuPont (and his mom a friend of mine who I see every month. We have shared MANY meals together and a hundred hugs). Zach so sweetly let Karina witness his pheresis treatment the summer we moved here to calm her fears about the blood treatment. He was diagnosed with ALL (leukemia) just like Karina at the age of 4. He is now 15 and can no longer fight the effects of a bone marrow transplant, severe graft vs. host disease, a liver transplant and dozens of ICU visits. He asked to stop all treatment and his parents agreed to grant his wish. He is a warrior and Karina and I will miss him greatly. He has earned his angel wings and knows he is going to Heaven. His family has been a beautiful testament of God's enduring love for his children.

This Tuesday is the 6 year anniversary of Karina's diagnosis. Leukemia was the furthest thing from our minds for this healthy child with a fever and pale skin that week prior. Tonight when we were Skyping with Dwight I mentioned this anniversary approaching. Karina immediately let out a squeal of delight, threw her fists in the air and had a huge smile on her face which said, "conquerer" all over it! Dwight and I were a little taken back. Honestly, it is not what Dwight and I had in mind for our emotional response but she taught us a lesson right then as she does on a regular basis. We are celebrating 6 years of life for Karina! Not 6 years of anguish. We are celebrating a life of health, joy, experiences, happiness, learning, friends, smiling because she is happy. We are celebrating God's healing touch, grace, mercy, love, spiritual growth, blessings and faithfulness to us. Tuesday will be a day of counting up as the number gets higher and higher and we count the years of life God has chosen to give Karina on this earth. We will celebrate with a special gift and lots of "6" things as a symbol of the 6 precious years we have had with Karina. She is a survivor and fighter living each day thankful for the opportunity to live. Karina's life has brought us to a place of peace in our lives, assurance of God's presence and where we will continue to find rest. We can't wait to see what Karina can teach us in the next 6 years.

In His hope,
Dana

Sunday, January 23, 2011 8:46 PM CST

Hello! Needless to say our family has been focused on Dwight's precious time at home for R and R. Rest and Relaxation it has been. Dwight arrived home well and tired. He battled a bug for a few days and since that passed we have been spending our time as a family. The time together has been special in every way. Eating meals together, sporting events, watching movies, shopping, and laughing. We have spent time with friends and attended a military function.

Somehow life seems a bit lighter........thanks to Dwight. I carry the seriousness of life a little too far sometimes, but not Dwight. Karina had been out of the hospital just three weeks when Dwight left for his assignment last June. Karina truly is stronger and happier now than ever. As I have said before, she knows that there is nothing else we can try for her GVHD situation. There is peace in all of our hearts.

Thank you for your faithfulness even when I am not to this blog. God continues to answer prayers............the thousands of prayers you have prayed for Karina's skin. Her GVHD has been stable, minus one day in early Jan. We began a slow taper of the prednisone lowering every other dose. She takes 10 mg every other day. We are now dosing 10 mg then 7 1/2 mg the next dose. This is a BIG deal for her body after 6 years on steroids (as of Feb 8). So far her skin has shown no changes with the decreased dose. Let me tell you that her skin is annoyed even if her pills are a few hours late, normally. This is God's might hand on Karina's body. We ask Him every day to take away Karina's GVHD in his power, might and timing and if he chooses to do so we give him all the glory and honor. Our goal is 5 mg of prednisone every other day to allow her to begin daily growth hormone shots. Praise God for this major step of stability in Karina's skin. Thank you for praying.

The boys are dribbling away at basketball and counting the months until baseball begins. Travel baseball for Braydin is in full swing with conditioning and fund raising. Dwight has enjoyed hunting time with them and is headed on a date with Karina soon. Dwight is a wonderful father, husband and human being. Absence made us all realize how much we truly love Dwight. He heads back on Thursday with a lot of great memories and leaves me with a few extra pounds. He will attend flight training for his new job in April here in the states and we hope to see him for a day or two on his return trip. The bulk of the deployment is behind us as we anticipate April then his return this summer.

We are gearing up for our next assignment to Travis AFB. Dwight will be commanding the base which holds much responsibility. it is a commitment for our whole family and we feel honored for the opportunity. We are researching and making contacts...........God is directing us and blessing us with information placing special people in our path.

Thank you for checking in and continuing to pray.

In His hope,
Dana
New Photos..........shameful. Finally the Halloween photos are gone. I had no idea I was so far behind.

Monday, January 10, 2011 11:56 AM CST

Happy New Year! The Sones family wishes you all a year of blessings as we head into 2011. Karina is doing fine. She has battled a stuffy nose for a month but otherwise has been healthy. She had a day of skin flair last week that kept her home from school. i am not certain what triggered it but we can imagine a nasty sunburn all over our body in the dead of winter. My mom happened to be in town for a few days of girl time so we made the best of it with a trip to Boston Market for lunch. Karina has been in good spirits, attending school full time and sleeping 12 hours every night. Can you imagine that?

We are at DuPont all day today and tomorrow for Karina's IVIG antibody infusion. The IV insertion is a bear but once we are started it is usually uneventful. We are expecting a good snow storm tomorrow evening so we will arrive here tomorrow as early as possible since the infusion day takes about 7 hours total each day.

We are counting down the hours now until Dwight returns home for R and R. It is nice to not be counting down months and weeks. He will be home Wed around lunch time. He needs a break from the daily responsibilities and I am so glad home is a happy and restful place for him. We have little planned........a progressive dinner with our friends, a few hunting days for Dwight and the boys here in DE and lots of time relaxing. My calendar is as clear as I can make it.

God continues to be our strength as live each day thankful for life, opportunities, freedom and desiring to serve Him daily. We are praying for our friends battling cancer. God bring a cure.

Thank you for checking in on Karina. I will post new photos when I get home. Sorry for the long delay in an update.........I must have been having way too much fun celebrating the holidays! I hope you did too.

in His hope,
Dana

Tuesday, December 21, 2010 8:21 AM CST

Merry Christmas! Just a quick holiday update to wish each of you a wonderful holiday season! It is such a joyful time of year in many ways. Each of us reached goals, accomplished tasks and personally grew. We also have memories of sadness as we tackled new challenges, said goodbye to loved ones and dealt with disappointment. Through it all we had the constant of God's love and faithfulness to us. I pray that your celebrations this week are full of joy!

Karina is doing great. She continues to battle fatigue on a daily basis as school takes all her energy in a good way. She is experiencing the life of a 10 year old school child with new and exciting things each week. She attended Sunday School for the first time this week and a friend called last night to tell me she saw her "hauling" down the hall toward the classroom. She said no one was going to get in her way. I love her spirit!

Medically, Karina remains unchanged. Her antibody level remains very low but all other blood work is normal. Her doctor will begin a medication change Jan. 1. He is hoping by increasing her immune suppressive drug and lowering her steroids very slowly may allow her skin to stay stable and get us closer to beginning growth hormones. She needs to be at 5 mg of steroids every other day to begin.

The boys enjoyed the first snowfall last week. We are expecting some snow for Christmas...........next year we will definitely not have a white Christmas in California. We will move sometime next summer to the northern California area and are very excited about it.

We are looking forward to Dwight's two weeks home Jan 13th. The kids are doing fine. I think Torin has had enough of Skype. It is just not the real thing so I suspect he will be counting down the days after Christmas. My in-laws come in this weekend and we are excited about this.

I wish each of you a most wonderful Christmas. Thank you for being a part of our lives in faith, prayer and love. I count it an honor to pray for your needs just the same. Thank you for sharing your lives with our family.

In His hope,

Dana

Tuesday, November 30, 2010 8:02 AM CST

Happy post Thanksgiving! We packed up the car on Wed morning for grandma and grandpa's house and had a wonderful weekend. We came home with great memories and tired. I could write an Erma Bombeck funny article about the adventures of our trip but out of respect for my kids, I better not. I found myself very thankful for many things this Thanksgiving.

Karina got sick just as we arrived to Dover and stayed home from school yesterday and so far this morning she is still sleeping........9:05 am. She felt better last night and I pray that she wakes up strong and healthy. No fever so no hospital visit.

In a few hours I will pick up the boys from school and head to DuPont for them to make their golf ball sales donation and have a tour of the lab. Karina will have one apt. before we head home.

I don't often write about the "pediatric cancer world" in which we live but I would ask that you pray for the many families who have lost children to cancer and pray for them this holiday season. There are many anniversaries for parents of kids with cancer.....diagnosis day, relapse day, dreaded news from the doctor day, birthdays with no child to celebrate, holidays with the absence of a child etc.........the sorrow is immeasurable here on earth. I pray that these families find immeasurable comfort in God, strength that only He can provide, truth in HIs word and a reason to celebrate this season. Jesus!

I find myself very busy with the Christmas season quickly approaching. I am daily reminding myself to capture the joy of this season, don't try to do "it all" which is so my nature and capture the meaning of this season with the kids. With Dwight gone it is so easy to attempt more than i should.

A little blessing story for you. We arrived Sun evening from our trip, tons of luggage, laundry, a sick Karina, mail etc.........all the boys wanted to do (after they unpacked their suitcases) was to put up the Christmas tree. We settled on getting it put together but not decorate it until another night when Karina felt better. There was one large section that would not light up even though we had all the plugs plugged in. We searched for the cause and eventually gave up. The boys went to bed and I went about my 1,000 chores. I was praying as I worked about a variety of things and when I came back to the family room, the unlit part of the tree had mysteriously turned on, all but a few lights. I smiled and felt God saying to my heart, "I am hear, don't give up, I care about the little things in life, I want your boys to see the "light" of the Christmas season, be still and wait on me."

I pray you all are enjoying the preparations of the Christmas season. I love the hustle and bustle of planning, shopping, giving, cooking and singing our way through the month of December because this gives me daily focus of celebrating our Kings birthday. He is so worth it!

In His hope,

Dana

Friday, November 19, 2010 9:34 PM CST

All is well, just busy. Karina just finished two full days of antibody infusion and she tolerated it very well. We will continue to receive this every month which is a bit of comfort with Karina in school and the cold and flu season upon us.

Karina's doctor made an interesting comment today. Many people over the years have asked me about GVHD and if it will ever go away. Her doctor in DC said yes, eventually it dies off after a long hard fight. Her doctor here says she may have it forever. When we were talking yesterday he mentioned that it may be healing slowly and could possibly go away. Only God knows. This whole conversation started with "what do we do next?" with Karina. He is not ready to make any more leaps of faith, as he calls it, toward unresearched drugs. I told him how normal our lives are, generally speaking, not normal to many but to us. We are so content except Karina is not growing and is actually smaller than when she had her transplant 4 years ago. She is way at the bottom of the growth chart, like -50% if there is such a thing. So, Dr. Kolb's goal is to reduce her steroids by half to allow the start of growth hormones. This is a very long term commitment (many years of daily shots) but growth is vital at this point for Karina. This is only talk at this point. For now, please pray that she can one day tolerate a lower dose of steroids to allow a new treatment.

The boys are doing well. Their golf ball sales are done for the winter. We will close up shop this weekend and bring in the sale racks. Nov 30th the boys will donate $3300 to Childhood Cancer research at Karina's hospital. We will then go on a tour of the laboratory. We are all very excited about this. They have worked diligently and faithfully. The golfers have been generous making their cause a success. I will take pictures.

Dwight LOVES his job. What more can I say. He works around the clock taking off a few hours on Sunday but all without complaint. He is getting excited for his two week break in Jan. and so are we.

I will update again in a few day. My eyes are so weary they can't stay open. I look forward to writing about what I am thankful for.

Thank you for checking in and for those of you who email me making sure I am alive and well when I don't update Caringbridge often enough. :) I love you all.

In His hope,
Dana

Tuesday, November 2, 2010 9:17 PM CDT

The kids and I had a super Halloween. Karina was a cute bunny rabbit and the boys golfers! They had the day off today for election day so we managed to pack in breakfast out, two games of bowling, a few groceries, fishing, dinner out and a movie at home. When the kids are home I find it easy to turn off all other responsibilities and tune into them. It was a fun day together.

Karina is doing well. She continues to go to school daily and comes home and completes her homework with help. Her principal is considering a little bit of one on one help at school for Karina. She is temperamental about her skin and rightfully so. She continues to stay well greased with aquaphor and takes frequent baths. Her steroid moods have been noticeable lately and in many ways she finds it difficult to refocus on things other than her needs. This too shall pass, I pray.

I have been training myself to pray daily to be a blessing to someone else each day and to receive the blessings that God would have for me that day. I want to keep my mind in tune, 100% alert to God's presence in my life. I prayed before I left the house for my exercise walk to be relaxing for me and an opportunity to clear my mind of "gunk". As I took off across the field around the perimeter of our base I heard a rustling sound in the trees outside the fence. Two deer came from nowhere and ran leaping along the edge of the fence. What was interesting was that the smaller and much younger looking deer was leading the way. The very large doe (I bet 150 lbs) was following behind. When he saw me, he took his eyes off where he was going and ran smack into a tree. It stopped him in his tracks, he shook his head a few times and carefully walked around the tree which was close to the fence and proceeded on. It was a clear sign to me from God to stay focused, don't take my eyes off God and his path for my life. Follow HIm and not someone else or something else in life. God's word says to stay focused on Him. I am challenged personally to memorize more scripture so that it is quick to my mind and lips allowing me the confidence to live daily in faith and hope.

Have a super week and thank you for checking in with us. New photos.

In HIs hope,
Dana

Sunday, October 24, 2010 8:55 PM CDT

I want to share a great article on the Transit Center at Manas where Dwight is currently serving at the wing commander. The article touches on all aspects of the Air Force bases mission, humanitarian relief and political strife in the country.

Karina is doing fine. Her skin condition is a bit out of control and we are adjusting medicine a bit.

Braydin was in a baseball tournament (two day notice to fill a slot and we took it) at Cal Ripkin Academy in Aberdeen, MD. His team played their hearts out and won the whole thing. The received a large monitory gift for their team and each child got a "home plate" trophy plus the thrill of playing on Cal Ripkin, Sr's field. Stadium seats, announcer, music between innings etc........the whole nine yards. It was a great weekend. We are all very tired and looking forward to a super week ahead. The leaves are changing and a beautiful sight.

We met a lovely grandpa today at the field. He asked if he could be bold enough to inquire about Karina. He felt compelled, was sincere and I was happy to tell him. Because behind the long list of diagnosis, illnesses etc.......is the opportunity to share my faith, God's healing power, His ability to give strength to Karina and our family, His plan and purpose for Karina that has opened the door to telling others about Jesus. He too is a Christian and lost his wife of 38 years to pancreatic cancer earlier this year. We shared our faith and he and his daughter (the mom of a new player on our team), Karina and I stood in a tight circle at the ball field and He prayed for Karina. God was with us on the ball field. We missed nearly the whole first game because Karina was not feeling well this morning. I felt that God got us to that field today to meet this gentleman.

Below is a great article worth the read. Blessing to you as you head into the week. Thanks for checking in and praying faithfully.

In His hope,

Dana

News, 25 October 10, morning
The Spokesman-Review
October 24, 2010 in City
Kyrgyzstan�s uncertain future looms over fate of U.S. air�base
David Wasson The Spokesman-Review
�
Tags: 376th Air Expeditionary�Wing Afghanistan Dwight�Sones Fairchild Air Force�Base Kyrgyzstan manas transit�center Sam�Patten Wesley�Nesbitt

Col. Dwight Sones, commander of the 376th Air Expeditionary Wing in Kyrgyzstan, has made community outreach a key focus of the U.S. air base. The base hosted an estimated 2,000 Kyrgyz visitors Oct. 18, 2010, for tours and demonstrations celebrating the more than 600 civilians from the Bishkek area who work at the Manas Transit�Center. (Full-size photo) (All photos)
MANAS TRANSIT CENTER, Kyrgyzstan � Taking advantage of an invitation to tour this small U.S. air base as a friend of a civilian Kyrgyz national who works here, tobacco producer Ulvgbek Abazgano took a moment to reflect as he struggled to describe what he was�feeling.
The roads are paved and smooth. The buildings, primarily reinforced tents and other temporary quarters common among U.S. expeditionary bases, all have hot and cold running water, flush toilets, heat and air conditioning. Food is�plentiful.
�It�s like a small America here,� said Abazgano, who speaks some English but relied on an interpreter to help him find the right�words.
The strategically located Manas, where hundreds of airmen from Fairchild Air Force Base near Spokane are regularly deployed, is a key supply and refueling hub for U.S. and coalition combat operations in nearby�Afghanistan.
But after nine years in the former Soviet republic, and at least one scuttled eviction notice, the base�s future remains�unclear.
Political turmoil, pitting pro-democracy reformers against pro-Moscow hardliners for control of the impoverished nation, has turned the base into a wedge�issue.
U.S. military commanders insist their sole focus is the mission at hand, which is quickly getting troops, cargo and fuel into Afghanistan. They�re content to let the State Department and others tend to the internal politics of Kyrgyzstan, the only nation in the world to host both U.S. and Russian military�bases.
Whether they like it or not, though, the roughly 1,000 military men and women deployed at Manas also serve as de facto diplomats, particularly with the Air Force embarking on expansion plans that put greater emphasis on large-scale permanent�improvements.
Now under way, for example, is a $31 million tarmac expansion that will enable all military aircraft to be moved into secure locations away from the nearby commercial terminal at Manas International Airport. The base uses the commercial airport�s�runway.
Col. Dwight Sones, commander of the 376th Air Expeditionary Wing at Manas, defends the project and its cost while acknowledging he�s uncertain how long the base will be�here.
Its one-year, $60 million lease for the land the base is built on expires next year, meaning the base�s future is in the hands of a new government being assembled from among the five political parties that won seats in Kyrgyzstan�s newly empowered parliament earlier this�month.
�You can�t keep holding off on projects that need to be done,� said Sones, who took over as base commander in June and has launched ambitious efforts to engage and support the Kyrgyz population, with a greater emphasis on humanitarian�assistance.
�Many times, people will ask, �Will the base be here next year?� � he said. �People have been asking that every year, and we�ve been here nine years�now.�
Sones said he believes Kyrgyzstan is important to America, both for its proximity to the war effort in Afghanistan and as an emerging democracy in a part of the world ruled for decades under authoritarian�control.
�Kyrgyzstan is the crown jewel of Asia,� Sones said last week during an interview with Spokane-area journalists in his briefing room at Manas�headquarters.
Charismatic and confident, Sones has no trouble working a crowd even when he needs a translator to convey his�message.
Earlier this month, he welcomed an estimated 2,000 Kyrgyz nationals, primarily friends and family of civilian employees from the Bishkek area who work on the base, drawing several rounds of cheers and�applause.
He posed for pictures. Taught youngsters how to fist-bump. And rarely missed an opportunity to extol the benefits of U.S. and Kyrgyz partnerships: �With positive relationships, you get so much more done,� Sones told a handful of Kyrgyz journalists from Bishkek in an impromptu news conference near a barbecue pit where long lines of base visitors were waiting for American-style beef�ribs.
Outside observers applaud the aggressive outreach efforts but said U.S. officials may have waited too�long.
�One of the reasons that base is on tenuous grounds is because there�s been a failure by the U.S. to communicate the benefits to the residents of Kyrgyzstan,� said Sam Patten, senior Eurasia program manager for the Washington-based Freedom House, a nonpartisan watchdog group that promotes democratic values. �The United States offers them a better option than some of these other countries looking to influence�them.�
Namely, China and�Russia.
Kyrgyzstan, a nation of 5.5 million people, is at a�crossroads.
Much of the civil infrastructure, from roads to schools to utilities, was built by the Russians when it was part of the USSR, and has gone largely neglected for nearly 20 years following the collapse of the Soviet Union in 1991. A revolution in 2005 swept into power a new coalition, which was ousted following violent street protests this past April. An interim government is in place until representatives of the five political parties that won seats in parliament can form a coalition�government.
�My sense is the people of that country want results,� said Patten, who spent three weeks in Kyrgyzstan this fall. �They�re tired of elections, and talk of change. They want electricity and heat as winter�comes.�
Fairchild airmen have taken on key roles in the community outreach efforts, volunteering to deliver humanitarian supplies and help rebuild decaying schools, emergency shelters and other community fixtures. The base�s doctors have organized educational seminars and training for Kyrgyz�physicians.
�We actually make a lot of friends out here,� said Airman 1st Class Wesley Nesbitt, who helps oversee Kyrgyz contractors hired at the base and is among those volunteering to deliver humanitarian aid, sometimes digging into his own pocket to pay for needed supplies. �It�s really nice to get to know people and help where we�can.�
Nesbitt is helping design many of the base improvements that military commanders are�considering.
Base offices are located mostly in portables, including converted cargo containers for easy placement and removal. Many others are still in reinforced tents symbolic of short-term, expeditionary�bases.
�Our hope, of course, is to make these facilities more permanent and be good partners with the Kyrgyz people,� Nesbitt said. �But they just had elections here, and that could factor�in.�
Sultan Aiylchiev, 23, a recent college graduate and financial services consultant in Bishkek, acknowledged that Kyrgyz feelings about the U.S. base�vary.
�It�s really complicated,� Aiylchiev said, using an interpreter to help him with his English. �For one side, it�s all political. But unemployment in our country is high, and there�s also the economic side of�it.
�What the base shows is there�s another way of�life.�
these wars would have been over in months, not years had to goal been to win with force. So, why didn't we just do that? Because bleeding hearts would have never supported what it would have taken to actually win. Instead, they prefer things to drag on and mock all forms of success, while screaming about all civilian deaths or allegations of soldier�misconduct.
Our �Empire� will not die in Afghanistan, it will die right here due to a populace of head in the sand, cry baby, bleeding heart whiners who fail to see the world as it really�is.
http://www.spokesman.com/stories/2010/oct/24/kyrgyzstans-uncertain-future-looms-over-fate-of/
FT.com
Kyrgyzstan faces fresh unrest
By Isabel Gorst in Moscow
Published: October 24 2010 23:56 | Last updated: October 24 2010 23:56
Kyrgyzstan was braced for more unrest, after the leader of an ultranationalist party that took the lead in a recent parliamentary election accused the security services of trying to assassinate him and annul the poll.
Kamchibek Tashiyev, leader of the Ata-Zhurt (Fatherland) party, accused the security services of orchestrating an attack on his home outside Bishkek, the Kyrgyz capital, on Saturday when armed assailants battled with his bodyguards.
�They broke in like bandits � I think they intended to shoot me,� Mr Tashiyev told a press conference. �They want to cancel the election results and declare a state of emergency.�
Keneshbek Dushebayev, head of the security services, denied involvement in the attack and called for an investigation.
�If my people are guilty they will be punished. If not, it is Kamchibek Tashiyev [who] will have to publicly apologise,� he said.
The interim government took power after Kurmanbek Bakiyev, the former president of Kyrgyzstan, was ousted in a violent uprising in April. It had hoped the election, which ushered in central Asia�s first parliamentary democracy, would unite the nation after six months of deadly political and ethnic upheaval.
However, preliminary results of the poll gave a surprise lead to Ata-Zhurt, an ultranationalist party that includes many of Mr Bakiyev�s former allies.
Questions about the handling of the poll have delayed release of the final tally, stoking political tensions.
Hundreds of Ata-Zhurt supporters rallied in Bishkek on Sunday demanding the resignation of Mr Dushebayev and calling on the government to finalise the results of the election.
Opponents of Ata-Zhurt have staged small protests in Bishkek for more than a week, plastering banners on government buildings saying �No to Tashism� and �Down with the Bakiyevs�.
Ata-Zhurt enjoys strong support in Mr Bakiyev�s homeland in south Kyrgyzstan where clashes between ethnic Kyrgyz and Uzbeks in June left more than 400 people dead.
Mr Tashiyev warned on Saturday that �thousands of his supporters� in the south were ready to march to Bishkek to ensure his safety.
Ruslan Tashanov, an independent political analyst in south Kyrgyzstan, said the breakdown in law and order was stoking opposition to the interim government. �There will be total chaos if this is not stopped. It all goes to show that Kyrgyzstan�s political elite is not ready for democracy,� he said.
Copyright The Financial Times Limited 2010. You may share using our article tools. Please don't cut articles from FT.com and redistribute by email or post to the web.
http://www.ft.com/cms/s/0/c0bfa77c-df8b-11df-bed9-00144feabdc0.html

Sunday, October 17, 2010 9:52 PM CDT

Thank you all for your support for our team for the Light the Night Walk. We had a great evening.

I want to share a few memories from the Leukemia Lymphoma Society Light the Night Walk last night. The day began very windy and cool but by evening the wind had calmed even at the beach and the temperature had risen. That was God's way of telling us He was in our presence.

Several friends from Dover came and walked with us which was so special for Karina to see familiar faces. My parents also came up and walked. The boys held a banner with a photo of Karina that I had made for the walk. We were to decorate the banner and some folks had lights on theirs, beautiful artwork and creative things I surely could not do. We all received T-shirts and Karina's shirt said survivor on the back. She enjoyed the evening and walked almost the entire way with her walker. I was so proud of her. i spoke on behalf of Karina and to look out and see all the red, white and gold balloons was breathtaking. Each person in the audience had been touched by cancer in some way. Everyone had a story to tell. There were many smiles and hugs shared last night. There was a bond of hope among people there. There was a sense of energy and confidence by the red balloon holders as team members that supported/loved/encouraged/cared for/raised money for the survivors. A poem was passed out last night that read:

What Cancer Cannot Do

It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit.

Karina and this group believe this and live it.

I came home thankful for our precious Karina. The day by day health challenges that Karina faces can overbear my heartfelt gratitude for her. She is a shining light and last night I was reminded of that.

Over the past few years Torin has tried to reason out Karina's situation. He is now 8. He used to continually ask when would she get better, when would she get to ride her bike again, when would she get hair, when would she be normal again etc.......... he recently declared that she is perfect. She just doesn't have hair. I smiled as he has accepted Karina as God wants her. I chuckled inside. He is a good boy.

New photos attached.

In His hope,
Dana

Thursday, October 14, 2010 8:02 AM CDT

I wanted to post some information regarding the Light the Night Walk this Saturday, Oct. 16th. Sign in begins at 5pm and the walk is at 7 pm. We will arrive close to 5 pm so after the walk we can head home. If you are local and planning on joining us we will be meeting around the Village Improvement Association building at Boardwalk and Grenoble Place. This is at the very north end of the boardwalk. If you head down Rehoboth Ave and the water is in front of you, take the a left at the light just before you enter the circle, this is 2nd drive. Follow this over a small bridge to the end and take a right. Grenoble Place is a block off the boardwalk on the right side. We will meet around the sign up area. I am so excited for this walk down the boardwalk. Karina was asked to speak and I pray she will say a few words of thanks.

Thank you for your support in many ways.........

In His hope,
Dana

Sunday, October 10, 2010 8:52 PM CDT

Karina is doing well. She is tolerating school, staying healthy and enjoys being with her peers. We are grateful for the provisions and protection God has provided her.

Education is another level of medical acceptance for Karina as she continues to learn at a different pace than her peers. She does not seem to notice or care which is a gift God gave her. Karina's only complaint about this whole deal in her life is; when will her GVHD go away, when will she get hair and when will she grow. Only God can answer those questions and for now she is somewhat content with that. I am very content with that. Praise God.

This Saturday is Light the Night Walk (Rehoboth Beach, DE) which is the Leukemia Lymphoma Society annual fund raiser. Thank you for the generous donations you have made to our team, "She's Cured." If you still want to donate you can at www.lls.org or www.lightthenight.org and follow our team name or my name and hit on donations. Many thank you's for your loving support. This is the first fund raiser I have ever lead and you all made it successful. Karina was asked to speak and if she doesn't than I will. My parents are coming up for the weekend. We are very excited for the walk.

Dwight is doing well. You can follow the bases website at www.manas.afcent.af.mil or google The Transit Center at Manas. There are usually a lot of good photos. Right now there is one of Dwight receiving his flu shot............great biceps! He continues to love his job and we are already looking forward to his mid-tour visit home in Jan.

The kids are thinking about their halloween costumes. Braydin is following major league baseball right now, the Redskins, and Penn State. I just ordered a new hat and sweatshirt for PSU, whipped it on this weekend and watched it bring no luck. Foo! Those Yankees are doing it though so everyone is sleeping well.

Life has been so "normal" for us the past two months. It seems a bit odd for me not to be worrying about every germ, every minute of Karina's life and wondering if the boys are dealing with this okay. I have made commitments to Bible Study and continue with my volunteer group, am getting in somewhat regular exercise, attending church, grocery shopping alone and finding humor in life. I found myself looking closely at the American Girl catalogue for fashion tips, laughing when Karina whines (instead of calling the doctor), thinking beyond the next hour, making plans on the calendar and keeping them, letting the house get a little dirty and dying my grey hairs. I am enjoying gardening and the process of planting, pruning and nurturing. Life is full of what God has given me..........contentment, peace, hope, love, joy and faith in His great plan.

Thank you for checking in, praying and messages on the guestbook. We find strength from each of you in different ways. Your lives, your writing, your testimonies, your encouragement, your ability to empower us spiritually, your prayers and your belief in God's goodness. Thank you.

In His hope,
Dana

Saturday, October 2, 2010 7:15 PM CDT

Thank you so much for the hats. My dad loves them. We appreciate you giving them to the kids with cancer. I loved them so I know they will too. i feel good. I am going to school every day. My teacher is Mrs. Boris and she is very nice. I got super citizen for the month and got to have a pizza party with my teacher and 5 other students in my class. Also, we had a dance a thon at school and I watched everyone dance. It was funny. Thank you for praying for me. My mom and I read your messages. Love, Karina

I am Karina's brother, Torin. I care so much about her. Karina, she is so funny sometimes. I love my sister so much. love, Torin

The hat drive is officially over. I think anyone that contacted me about sending hats has done so and I am proud to say we sent over 300 hats! Thank you so much for jumping in on that project with excitement. Karina has so much fun looking at the hats. Dwight just got a very large shipment yesterday and was really excited about it. Your support continues and I find your generosity astounding in every way. We love reading the guestbook entries and Karina truly finds encouragement in those. I think hearing the names from years ago and recalling events or special times is fun for her.

Karina had a great week at school. She continues therapy. She is experiencing the normal life of a 4th grader which has been all positive.

Thank you for praying for my friend Kim and her family. They have witnessed the power of prayer in their lives this past week as the comfort and reassurance only Christ can offer as been present. Kim's faith in God was very evident during her memorial service with many of her favorite scriptures read. They were beautiful reminders to all listening of God's love for us. The Bible is our tool for living........there is not better truth.

We are at a baseball tournament this weekend which is Karina's first. The day was so beautiful but very sunny for her. Even with sunblock and an umbrella over her she has a red face. This is the end of travel baseball until January when winter practice starts back up. The team plays well together and we will look forward to seeing the team again after the holidays. Basketball starts this week encouraging the boys cardio endurance. Torin remains in soccer and both boys are taking piano lessons.

I am in the process of scaling back my volunteer work a touch which will allow me more time for personal things. Dwight continues to love his work and is in good spirits when we Skype. He is doing, seeing and experiencing many things. We are almost at the 4 month mark. The holidays are approaching allowing the kids and I many distractions to keep us busy. Dwight will come home for two weeks in mid January.

I have nothing medical to report. Yea. Please continue to pray that the GVHD just goes away. God has the power and we have the faith to believe he can and will if he chooses.

This past week Karina celebrated her 4th anniversary of her transplant. We recognize this with thanksgiving, her survival, priceless gift of life, excitement to count more anniversaries and gratefulness that God chose Karina to walk the life she has. Dwight and I are so proud of Karina. She carries a spirit of hope around with her. Spiritual hope as others watch where Karina was and her healing now. Thank you for being a part of our lives. I have said over and over how much you all have lifted our burdens, carried our pain, prayed when we were out of words, cheered our hearts with your words, presence and cards, loved our child like your own and trusted God through good and bad. You are our encouragers, showing us by example how God wants us to live. Thank you for teaching US! We love you all.

I will update again in a week or so. We don't head to DuPont until the 15th, 18th and 19th. What a great break for us.

New photos

In His hope,
Dana

Thursday, September 23, 2010 10:56 PM CDT

Karina is fine.

I am so sad to write that my friend Kim just passed away a short time ago. I was tinkering around up way too late and my cell phone rang. Kim was a beautiful person inside and out. She leaves behind four beautiful kids and a precious husband who cherished his wife. I wish I understood how God chooses but I do know that He will provide what her children need and her husband. My prayer is that they seek Him in all things knowing well that He will meet their needs. This is a sad time for our Air Force community and also a time to reach out to their family for months to come letting them know our love and support for them. Thank you so much for your prayers. Many of you have told me that you have been praying for her. I posted a blurry photo of Kim from Kairna's party Sept 4th.

Karina is doing great. She is tolerating a full schedule at school, homework, therapy once a week and bloodwork. She makes no complaints about doctor visits at DuPont and is diligent to complete her homework. I could not be more proud of her. The energy level she is maintaining was unthinkable just a few months ago. After homework today she insisted we make Mickey Mouse cut out cookies.......so out came the flour and the mess that accompanies that process. They are cute and taste good.

Karina's bloodwork was perfect today. She has not had a shot in several weeks for her white blood cells. Her doctor wants to see her in a month. This is the first time in 5 1/2 years that we have had a break from doctor apts. Wow. Sept 26th is her 4 year anniversary date of her transplant. We celebrate the life that she was given.

Braydin and I are headed to a baseball tournament this weekend.......the big one in his eyes. I love the time together with Braydin. My parents will be at the house with Karina and Torin. This is NASCAR weekend. Torin, Carter, my nephew, and my dad are going.

Dwight is doing well.

In His hope,
Dana

Friday, September 17, 2010 9:19 PM CDT

Karina had a great report yesterday for her weekly bloodwork. Her white blood cells were high but without the shots to make the bone marrow produce cells. It is not certain that we are out of the woods yet. Her bone marrow must show stability over the next several weeks without shots and her GVHD skin condition must remain unchanged to keep her at the lower dose. The lower dose of immune suppression drug may be the cause of the low white blood counts the past 3 months but it is also our friend because it is a low side effect drug that has helped her skin over the past 3 1/2 years.

Karina was in school full time this week again. She reports every cough and sneeze daily to me...........her teacher continues to be helpful in protecting Karina. Karina loves being in school. She does get tired but her tolerance is amazing to me. I never thought she would tolerate a full day physically or mentally. It is a lot for Karina and when I think back to a few months ago.....ICU, ventilator, kidney failure...........I am certain that God healed Karina and has provide every ounce energy in her for His purpose.

The kids had off school today and the weather remains beautiful.

Thank you for the hats for the Put a Cap on Cancer. Thank you for the wonderful guest book entries. It keeps us connected to you and we appreciate the heartfelt love and support we feel through your words.

My friend, Bev, is recovering from a bilateral mastectomy and doing well. All margins were clear and she is considered stage 0, no further treatment. Praise God. My friend Kim, mother of fou,r is suffering right now. She is in the hospital healing after tremendous side effects from a harsh chemotherapy drug. Her cancer treatment is not stopping the spread of the disease the way it needs to. She has excellent doctors that are getting her body back to a comfort level she can tolerate after a week of pain and sickness. There is a prayer vigil for Kim at our base chapel on Monday. You may remember there was one for Karina during her ICU stay and we were so deeply touched by those that offered prayer. Kim is going to be blessed. Please continue to pray for her. Thank you.

Have a wonderful weekend.

In His hope,
Dana

Saturday, September 11, 2010 8:32 PM CDT

TODAY IS A DAY NONE OF US WILL FORGET WHERE WE WERE WHEN THE TERRORIST ATTACKED THE US. TODAY IS A DAY THAT WE PRAYED FREQUENT PRAYERS FOR THE THOUSANDS THAT LOST THEIR LIVES, THE THOUSANDS THAT HELPED SAVE THOSE THEY COULD, THE THOUSANDS OF TROOPS THAT ARE STILL BATTLING THE ENEMIES TO ALLOW US THE FREEDOMS THAT WE HAVE. OUR TV WAS ON A BIG PART OF THE DAY WITH FOOTAGE OF THAT DREADED DAY. TORIN TOLD ME AT DINNER THAT HE SAID A FEW PRAYERS GOD TODAY ABOUT THIS TODAY. I PRAY FOR COMFORT FOR THE FAMILIES TODAY AND THAT THEY SEEK GOD IN THEIR LIVES AS THEY MOVE FORWARD IN THE HEALING PROCESS.

KARINA IS DOING VERY WELL. WE SPENT TWO DAYS AT DUPONT THIS WEEK RECEIVING A SLOW INFUSION OF ANTIBODIES. SHE TOLERATED BOTH DAYS WITHOUT ANY COMPLAINTS OR SIDE EFFECTS. I CAN TELL THAT SHE IS TIRING OF LONG APTS AT THE HOSPITAL..........HUM? WONDER WHY. SHE MUCH WISHED TO BE AT SCHOOL AND ON DAY TWO I WHIPPED OUT THE HOMEWORK. SHE SCORED A 90% ON HER DE HISTORY TEST AND 100 ON SPELLING. SHE REALLY AMAZES ME. HER SPIRIT SOARS THESE DAYS......EVEN DWIGHT NOTICES ON SKYPE.

TODAY I PICKED UP NEW GLASSES AND SUN GLASSES AND BECAUSE SHE WAS WITH ME SHE KNEW THAT THEY WERE NEARLY THE COST OF A CAR.....AND MADE THE COMMENT THAT I WOULD NEED TO TIE A STRING AROUND MY NECK TO PREVENT ME FROM DROPPING THEM...JUST LIKE EVERYTHING ELSE. I'VE DROPPED MY KEY FOB SO MANY TIMES IT CRACKED. MAKES ME A LITTLE NERVOUS TO GET AN IPHONE.

BRAYDIN MISSED THREE DAYS OF SCHOOL WITH A HORRIBLE HEAD COLD AND RATHER HIGH FEVER. EVEN ON ANTIBIOTICS IT WAS HARD TO BEAT. HE IS JUST FEELING BETTER TODAY AND KARINA AND TORIN SEEMED TO HAVE BEAT IT.

WE HEAD TO DC FOR A WASH NATIONALS GAME WITH OUR FRIENDS THE SUMMERS. THE BOYS ARE SO EXCITED AND KARINA IS HAPPY TO SPEND THE DAY WITH DWIGHT'S PARENTS.

THANK YOU FOR PRAYING FOR MY FRIENDS. I LET EACH OF THEM KNOW AND THEY ARE GRATEFUL.

PLEASE CONTINUE TO PRAY THAT KARINA'S GVHD CONDITION JUST GOES AWAY. SHE ASKS ME FREQUENTLY WHEN THAT WILL HAPPEN. DR. KOLB REMOVED ONE THIRD OF HER IMMUNE SUPPRESSIVE DRUG TO SEE IF THAT IS WHAT IS CAUSING HER BONE MARROW TO STOP MAKING WHITE CELLS. HER NUMBER WAS UP THIS WEEK BUT BECAUSE OF THE SHOTS. WE ARE STOPPING THE SHOTS AND RECHECKING HER BLOOD NEXT THURSDAY.

WE ARE ALL WELL. I LOVE LIFE AS GOD HAS BROUGHT ME TO THIS PLACE OF PEACE, GIVEN ME JOY IN ALL THINGS, DELIVERED ME FROM SELF PITY/ANGUISH/FRUSTRATION/FEAR AND ENCOURAGES ME DAILY TO STAND FIRM IN HIS LOVE.

IN HIS HOPE,
DANA

Friday, September 3, 2010 8:56 PM CDT

HAPPY 10TH BIRTHDAY, KARINA!

I am attempting to update for the third time and am determined to complete an update for you all. No news is pretty much good news. Karina has been in school just about full time and has stayed healthy. The boys have not fared as well. Braydin and Torin both have missed a day of school this week due to illness. It doesn't take long to figure out that God has a hedge of protection around Karina. She loves being at school and our challenge is to go to bed plenty early to allow her the twelve hours she needs per night. She does not attend lunch, PE or recess with the other kids so I go in to be with her. We also travel the halls at non normal times to avoid extra exposure.

I am enjoying the few hours I have to myself after 5 1/2 years of not having a schedule or personal time. This week every hour to myself was spent shopping and planning Karina's birthday party for tomorrow. If you can imagine 14 girls having a "Spa Party" which will include, face scrub, chocolate face mask, foot bath/massage, painted finger and toe nails, back massage, glitter stuff etc........A few sweet moms/friends are going to come and help me tackle the 280 nails that need painted. We are all excited about the fun for tomorrow. Thank you for the cards sent to Karina and the special phone calls. They really mean so much to her. Karina does not remember her 7th or 8th birthdays because she was so sick so this is one she won't forget.

Karina's bloodwork was all good on Monday except for the white cells. We stopped the shots and the number went from 18,000 cells to 2,200. We are back on two shots a week until we see Dr. Kolb next week. I pray that this abnormality is a side effect of the immune suppressive drug she has been on for 3 1/2 years.

Last night Karina had the privilege of throwing out the first pitch at a Blue Rocks division A baseball game. It was in support of the Leukemia Lymphoma Society annual fundraiser for the Light the Night Walk. She has so much fun and the boys were so excited to walk on that beautiful field with her. The crowd cheered for her as the announcer read a portion of her bio. She smiled and waved at the crowd with her little white gloves on. She was nervous but did it all with ease. Photos posted.

The kids and I are excited for this long holiday weekend. The weather is perfect, no storm issues hit DE and hopefully not where you live either.

I received two copies of the DuPont donors for 2009 and the boys were both listed as well as our families photo and story about the boys selling golf balls for cancer research. The next day I received a call from a man wanted to donate his balls to them. They are so excited. Our neighbor (who got them started with the digging in the ponds method of gathering golf balls) just donated a large amount of valuable balls to the boys. Their stock is plentiful which means lots of money to be made. This continues to be such a special part of our families lives.

I used to post more prayer requests but have a few to ask of you tonight. Please pray for my mom. I will share more details soon. Please pray for our friend Taylor who beat neuroblastoma and developed a secondary cancer (leukemia) from the extensive chemo she received, Scott who is thriving as a survivor, a precious 96 y/o friend named Nettie who is battling old age, gracefully. A princess, mom of four, friend, inspiration and fighter named Kim who is battling breast cancer. My friend from babies in the church nursery together, Bev, who was recently diagnosed with breast cancer facing surgery this week. Thank you, prayer warrior friends. I somehow feel that by asking you all to pray that God will touch each of these special peoples lives as He has done ours.

I leave you with a verse that is familiar but a good reminder: "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lack wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." James 2-5

Thank you for praying for Karina.

In His hope,
Dana

Wednesday, August 25, 2010 8:40 PM CDT

We are all well. I have been excessively busy as many moms are this time of year. Last weekend Braydin and I attended an out of town baseball tournament. His team won the whole thing, 6 games undefeated, absolutely beautiful baseball and a very special weekend for Braydin and I. My in laws came for the weekend and I am so thankful for them and their energy to keep the house running and Karina entertained. :) My mother in law loves to do crafts with Karina. The boys will take a break from fall baseball, shocker I know, but mommy is at her limit for busyness.

Karina had her blood checked late last week and her white count was through the roof because the shots did their job. We will have her labs drawn tomorrow and see how much the white count has dropped which we expect it to do. Our hopes are that in the next several weeks her counts hold their own. All her counts seemed a bit off to me from normal so I am praying about this.

Today was the first day of school. Braydin entered middle school and had a great day. Yesterday's orientation really helped ease the nervousness. He is such a great mature boy and I am proud that he handled the day so well. Torin got a friend of mine for a teacher and we are THRILLED. He will do great in her class. Karina rose early to catch the full day of school. Oh my goodness did she do well. We arrive late to avoid the crowded halls and leave for lunch and recess then return in the afternoon. She followed directions, sat perfectly still and was blessed to have all 6 girls from third grade back together again. That is a special comfort for Karina.

I have to tell you how God has been working in my life. I have always prayed about my kids teachers prior to starting school. I never research, ask around, worry or fiddle with that detail because I pray about it and leave the rest to God and the school. I have not once been disappointed. God works out all the details. Karina's teacher is the perfect teacher for her. She told me at meet the teacher that she knew a little bit about Karina and that she would be perfectly comfortable with any situation or need that she has because she has 4 siblings and her parents also helped raise over 100 disabled foster kids over the years. WOW! Karina is in for a treat of a year with this teacher. Just this week I was feeling a little lonely for God not because I was not praying but I had not felt his presence maybe because i was not looking then BOOM he reveals himself to me.

I came to a part in my book last night that asked me to bow on my knees and ask God for a specific area in my life that I wanted him to hear and what I believed He could answer. I did that with a firmness and confidence that I lacked in past prayers. I get excited at what God is able to do.

A year ago our family met a bone marrow transplant survivor. Jake and his wife Beth have been friends and encouragers to us ever since. Jake's transplant was 15 years ago and he has more energy than I do.......no really he does. A few weeks ago he went to the Transplant games which are held every other year. He competes in Racquetball and bowling and won a metal this year. They came back with goodies for the kids and he presented Karina his medal. She wore it all day and it now hangs proudly in her room.

Dwight is doing well. Extremely busy. Skype is working perfectly. We miss him and find our busy schedules help time to pass.

New photos.

Thank you for all your love and support whether sending hats, donating to the Light the Night Walk, signing the guestbook or most importantly praying please know we are grateful. Thank you for caring enough to check in and read this update.

In His hope,

Dana

Monday, August 16, 2010 10:22 PM CDT

Karina is doing well. We are at my parents this week enjoying the last week of summer break. We went to a go cart/roller coaster/bumper water boats etc.....park this morning and Karina had a blast. We are enjoying cousins and family meals together. Tomorrow we will putt putt golf and the boys will go fishing. Karina feels great and her skin is stable.

Her apt this past week showed great blood work. She is still receiving shots every other day to increase her white blood cells. After receiving a dose of antibodies in the hospital she should be doing pretty well in the immunity category.

Braydin has will be in a baseball tournament this weekend with his travel ball team. it is so fun to spend time with him and watch these talented kids play ball.

School starts next week and Karina will be attending part time. I hope to build up her tolerance to a couple of hours in the morning and afternoon too with a break at home for lunch. We will see. The hard part is that her homebound teacher can only come after school which is so exhausting for Karina. It makes me a bit anxious until we see how it all works out. I am praying for Karina's future teacher to be understanding and helpful this school year.

Karina will have blood work done on Friday. The goal is to get her white blood count high enough that we can stop the shots. She has had some leg pain recently which is a side effect of the shots. Tylenol was enough to ease the pain. She is so happy with life and so am I. God is good.

Again, thank you for the hats for the Put a Cap on Cancer drive.

I will update again soon with new photos and a great story.

In His hope,

Dana

Friday, August 6, 2010 9:16 PM CDT

I hardly left the room today and yet I could not get a minute to write an update. Karina can keep me very busy. The nurse even found me in the cafeteria at lunch........but all is well.

Karina received a small dose of IVIG which is human antibodies today. This is an infusion that she has received every month since Nov 2006. Back in April she began having reactions to the infusion which were getting worse with each infusion. Her doctor decided to stop the monthly infusions. This also left her immune resistance at rock bottom. We do not know if this contributed to this inpatient stay and never will know but we have to better protect Karina from all infections. The antibodies ran for 7 hours today very slow with sharp back pain at hour 2. After 1/2 dose of tylenol with codeine, she was good as new. This will be the new protocol for the future.

We are going home tomorrow! Karina is so excited and somehow we have to play catch up for the week lost of summer break. The boys are doing great with my mom. My dad will come back for my mom in the next day or so. We feel so anxious to be home after this hospitalization. I think part of the reason is that the boys are home having summer fun and Dwight is not home to be the other parent like he normally is. Karina recovered quickly and she has all but begged since Wed to go home. Tomorrow we will be so happy to get in that car as always.

We have had new nurses who have done a wonderful job but leaving me exhausted trying "fill in" on all the details of Karina. We have had one over eager resident...........Our care remains outstanding.

I know God has a plan for Karina, her life is a testimony and my prayer is that every word from my mouth sings God's praises of his faithfulness to us. I found two angels yesterday? I hope you found one in your life. The man at Boarders was asking each customer ahead of me if they wanted to donate a dollar to AI DuPont. When it came my turn he looked at me and said, "do you have a coupon today?" I said no but I wish I had. He slipped up a paper from under the counter and gave me a hefty discount off my book. I said thank you and that I had a daughter in AI DuPont. He said, "well, can I pray for her." I said thank you so much and left. Why did he not ask me to donate to AI DuPont? I don't know. I then received a call from the hair salon to tell me they had a bag of golf balls for me to come and pick up. Remember that story from a few days ago? I have a feeling that I can find an angel in my life every single day. My personal challenge is to be an angel in someone else's life everyday.

Thank you for checking in, signing the guestbook (which I read to Karina today) and praying for Karina and our family.

In His hope,
Dana

Wednesday, August 4, 2010 9:59 PM CDT

Karina had a rough start, mentally not physically this morning when her doctor told us we would be here 6 more days. I felt the tears flowing down my cheeks immediately. I guess we both could have used a bit more explanation as to why. Tomorrow Dr. Kolb returns to work and we will hash out the details of her antibiotics, IV vs. oral which would be taken at home. Physically Karina has returned to her normal. She actually needed her blood pressure medication this evening. Every aspect of her health has normalized. She is in great spirits, smiling and took a walk on the unit with my parents. It is so good to see her so well again.

Karina was very mad about the length of time they want her to stay. She fussed and yelled about it all morning until Dwight called. He has a way of perking us both up. Her being mad is a good thing as it tells us she feels well. When she is sick it does not matter what bed she is laying in. I am praying for the perfect timing to bring her home. Her blood immunities are a bit higher today and that is great.

My parents were able to come up for a big part of the day today and I was able to spend some time with the boys doing lots of fun things. When I got home my house sparkled like it has never done before. The floors, windows and fresh vacuum marks on the carpet told me my mom had been working. I am so thankful not only because i like my house clean but to bring Karina home to a dirt free home is so wise. Thank you, Mom!!!

The boys seems to be doing great. I am so proud of their tolerance to all of this as a part of life. I pray that their hearts remain free of anger, jealousy and resentment all of which they could so easily have. God has prepared their hearts long before Dwight and I could.

Thank you for the many loving, caring and prayerful entries on the guestbook. It really is so fun to see who signed and where everyone is living now. Thank you for keeping up with the Sones family over all these years. Tomorrow will be 5 1/2 years ago we took Karina to the doctor for her first bloodwork which began this journey. You all have been faithful........our family is grateful for each of you.

In His hope,
Dana

Tuesday, August 3, 2010 8:52 PM CDT

So much better!

Karina had a night of healing last night. Around midnight her blood pressure rose to a normal level, her heart rate went below 100 and her fever was gone. Simply God's healing and your prayers. She woke up pealing like a snake shedding its skin from the GVHD flaring but this is to be expected. Karina's medical team is very pleased with her advancements today. She was up in the chair all day, made a stroller trip to the gift shop for silly bands and ate a bit of food.

I went out for a haircut and a bit of shopping which always takes longer than expected. :) She never approves of my absence but for mental survival one must take care of themselves. I had a stern talking to by her when I got back, mind you with Wendy's food in hand and new clothes for her. I then had a stern talking to her about how blessed she is to have a mommy here day and night to care for her needs verses the children whose mom and dad have to work all day. It is all perspective. We ate our Wendy's together and had a lot of laughs about life. She is such a sweet girl and thanks every nurse who takes care of her including the IV therapist that comes to draw blood and place IV's in her. I have a few things to learn from her.

Today we have seen healing. Her red blood is still a bit low, her white count barely holding its own and her kidney function is off because of the harsh antibiotics she is receiving. Overall, she is doing very well and I see us here a few more days. I will spend time with the boys tomorrow afternoon and am really looking forward to that. They caught enough crabs to make a yummy dinner tonight.

If you can take one more story........here it is. I desperately needed a haircut and got in my car and headed out to the nearest salon I could find. I walked in to this little off the road place and asked if they had any walk in apts. They stuttered around and asked if I could wait 30 minutes and I said I had better not this time that I had a child in A.I. The owner came to the desk and said come with me, I need to cut your hair and take care of you. I said I did not want to put her behind schedule and she said no, I need to get know you. She said why is your child at A.I. I explained in 3 sentences and she said well my dad is having lung surgery as we speak for cancer. We talked about many things and I shared with her where my faith lies. (They gave me a hand massage and cleaned my rings in cleaner while we chatted.) Not what I want to happen in life or what I think should happen in life but by following God's plan for my life there is peace and comfort. We talked about making good out of bad. I mentioned briefly about the boys selling golf balls in our back yard to raise money for pediatric cancer research. She was shocked. Then she said that her and her husband have a house in Chinkotigue, VA (sp?) on the golf course and they get balls in their yard all the time. I asked her what she does with them and she said nothing, do you want them. WOW. Maybe it will work out to get these balls for the boys to sell. I will let you know.

I think the moral to my story is a lesson my friends in St Louis taught me. They developed a motto for their lives to search for the angel's in life. Today, I found my angel. God is good.

In His hope,
Dana

Monday, August 2, 2010 6:11 PM CDT

Karina continues to battle a fever, at times very high. She seems to feel pretty well interestingly. The fever has eaten up enough of her red blood cells requiring a blood transfusion today. She is also receiving a protein called albumin which will help her vessels hold in the much needed fluids she has been given in hopes of raising her blood pressure. The volume of blood she was given will help her blood pressure as well. Her numbers have been 70's over 30's and much too low. If it all sounds confusing it is. Karina medical is like a perfectly balanced scale and if a grain of salt is added to one side, the scale tips.

The current antibiotics have caused her kidneys to be unhappy which is no surprise after the kidney failure she suffered in May. She will be switched over to an antibiotic that will be easier on her kidneys. Probably should have started with this drug but the nephrologist feels certain the kidneys will recover quickly now that the drug is removed. She has a large amount of the antibiotic still in her system according to blood tests.

We had hight hopes of being discharged in a few days but at best I think Thursday. Karina has no white blood cells in her blood and is receiving shots to increase the bone marrows production. This treatment can go on for many months safely and it no more than a shot a day. Karina's overall body immune system remains rock bottom. Everyone but Dr. Kolb is on board to restart the infusion of antibodies on a monthly basis at a very slow rate to decrease the side effects she has experienced. This will give her human antibodies that she currently does not have to fight normal everyday germs. She was receiving this treatment every 4 weeks since Nov 2006. I will always side with Dr. Kolb. When he is ready, I am ready as his pulse on Karina's care is the most comprehensive and accurate.

Karina's GVHD is a bit flared but not out of control at this point. We always have to be aware of an infection and fever causing her GVHD to flare which can lead to a fever. Steroids will fix many symptoms but we have to be certain that we don't hide a real infection. Nothing has grown in the blood cultures, no viral symptoms are present and a real mystery as to the cause of the fever. Maybe just the results of no immune system.

The boys have been treated to a crabbing adventure with my dad and uncle. What a treat for them and I am so thankful for the time they are investing in the boys to keep them busy. Dwight Skyped with us this morning at the hospital which cheered Karina up. She is well enough to ask frequently when we are going home and says she misses the boys a lot. I miss the boys. That is a good sign.

Thank you for your prayers. We cherish the friendships made through this website, we feel the love you have for Karina and know the faith you hold in our Heavenly Father to heal Karina if in his plan. thank you.

In His hope,
Dana

Sunday, August 1, 2010 10:30 AM CDT

My good intentions to update you all on Friday after our apt went by the wayside with lots of fun and summer activities. The boys are doing well making the most of each day of summer left. Somehow the countdown until school starts (aug 25) has begun. I don't like the thought so I buy the school supplies way ahead of time to prevent that feeling in your stomach that the kids will no longer be home all day but back to studies and structure.

Karina on the other hand is trying her best to make summer fun. Her school teacher finished up last Monday and now we are in the hospital. Karina's blood counts showed on Thursday that her white cells had dropped to a very low number despite the shots to boost her white cell growth. The shots are very effective but short lived.

We did shots on Thurs and Fri evening and on Sat afternoon the babysitter called and said she had a fever. I was a bit baffled because she had been perfect earlier in the day and even with the fever looked great and said she felt good. I brought her in at 12:30 am this morning and she was very sick through the night. She presented very similar to our trip here last April. That was a devastating time as you all know. She is receiving prompt and excellent care to prevent this blood infection to becoming a critical situation in her blood. She is on 3 high dose, broad spectrum antibiotics, has two IV lines in and capped off her fever at 104. this morning. She is up in the chair all curled up asleep. She is receiving extra fluid (bolus to keep her very low blood pressure up and her heart rate down Her heart rate has been 175bpm and blood pressure 70:s over 30's. i know some of us would pay big bucks for those low BP numbers.

We are praying that the medications do their job. We suspect the infection is in her blood as she is not battling any other symptoms that would support another illness.

I have a great photo of Dwight at the cancer hospital giving out the hats from our "Put a Cap on Cancer" drive. I don't think I can retrieve it from my laptop but will post it when we get home. Thank you for sending hats and if you still want to send them to me,you can. I will collect until Dwight tells me we have met their need. His photo speaks volumes you will see. He sees our family keeping in touch for years to come. Somehow he looks at home with these precious kids. I am going to ask if he were to wear a mask the next time if the kids can take theirs off so we can see their smiles.

I have great news to share! This week I received a large packet of information regarding the LIght the Night Walk on OCT 16th at Rehoboth Beach. Ideas to fundraise, more specific info about the evening. Guess who is in first place for fundraising for the state of Delaware Rehoboth Beach walk? WE ARE! Our team "She's Cured" has raised the most money so far and I am so thrilled and thankful. Thank you for donation and if you still want to give to raise money for the Leukemia Lymphoma Society you can go to their website. Leukemia Lymphoma Society and choose the state of Delaware, Rehoboth Beach and our team name, "She's Cured". Just as exciting to me is there are 60 people registered to walk with us. That makes me cry as I type. I don't barely know 60 people in the state of DE so I suspect some of you will be driving in for this. Karina will be tickled pink! This is so exciting for us especially since Dwight can not be here.

We were up all night and I am off for a nap. I will post again soon to keep you all informed with specifics to pray for. Please pray the infection and fever are gone, that we can go home by Tuesday and that her vital signs stay stable. I ask for prayer for rest and good health for me to care for Karina.

I have to brag about our babysitter yesterday who caught the fever. She is off to college in a few weeks with intentions of becoming a pediatrician She is on her way in my book. I was able to call her at 11 pm last night and asked her to come over and sleep and she was at my door before I could load the car. She has the boys today until my parents arrive around 2 pm. I am so thankful for their ability and willingness to drop everything and come.

In His hope,

Dana

Friday, July 23, 2010 10:55 PM CDT

Somehow summer feels busier than the school year. We are so thankful for the ability for our house to be kid central this summer. The kids have made wonderful friends and not once have I heard that anyone is board so I guess I consider summer a success so far. It is pushing midnight and the floors need swept, the plants watered after our scorching weather and this website needs updated. The washer and dryer are running and the the dishwasher, too. Life is full and God is blessing every minute of every day for our family. Dwight is working very hard and LOVES his job which makes long hours unpainful. The boys are happy and healthy and Karina is perfect. My heart overflows with joy and contentment.

The "Put a Cap on Cancer" hat drive is still under way and I want to thank many of you for sending hats. The kids and families will be so pleased to receive these. I have not set an end date for collecting hats so if you want to send hats you still can.

Karina's blood was taken on Monday locally and i was able to know before we left that her white count rose slightly from last week. The doctors office called on Wed and said that her anc number had risen over 1000 and they were pleased with that. We got another week off and will go to DuPont for blood work, check up and nephrology apt next Thursday. It will be nice to see all of her numbers rise further as I am not totally comfortable where her blood levels are compared to the past 2 years or so. Please pray that her blood returns to normal.

Karina remains happy, sassy and full of life. She sleeps about 12 hours every night. We have been doing lots of crafts and some school work that she asks to do. Therapy continues and her homebound teacher will finish up next week.

We continue to focus on God's plan for our lives, accept His will with hope, cherish our personal relationship with Jesus, daily ask forgiveness for our sins, desire to strengthen our daily walk as Christians and find joy in all things.

new photos!!

In His hope,
Dana

Sunday, July 18, 2010 10:15 PM CDT

New photos are posted. Sorry I have been so bad to keep you updated on photos. I will post more photos soon.

Please pray for Karina's white blood count to come up on its own. She seems to feel fine and has had a lot of energy. Tomorrow morning we will have her blood checked locally then by evening we should know more details. I will post when I know more.

Thank you for sending hats for the "Put a Cap on Cancer" hat drive. It has been so fun to see the great hats being sent. I have a box ready to send to Dwight on the next flight out of Dover.

Dwight was sick yesterday with a pretty serious stomach bug. He is up today but not feeling 100:%. Thanks for keeping him in your prayers as well.

In His hope,
Dana

Wednesday, July 14, 2010 9:10 PM CDT

Karina's blood counts were okay today. Her overall anc number was 0 last week and today it was 1002. This is a bit out of the woods but not telling us if Karina's white blood can recover and produce on its own since we know this number went much higher before dropping off for todays counts. Next week should tell us more. She had just the three shots last week to stimulate the white cell production and now we should see her rise to a safer level on her own. Please pray that this happens. She will remain off the low dose chemotherapy drug probably forever in my opinion. I see no difference in her skin without it. YEA for that.

Karina seems to feel good. She is a bit more tired at times but that is not too strange. She continues to love going to therapy. We have new neighbors and friends that we are all excited about. That is a special treat in the summer when friends have moved away as well.

My parent arrive tomorrow and we are excited about that. Torin jumped out of bed tonight just to ask what time EXACTLY they were arriving.

Braydin's All Star baseball team won their first two games and move out in the brackets. The next game is Friday evening and that should be fun to watch with my dad.

Dwight visited the cancer center today. He had so much to tell me about the facility. There were 30 children there and the hats I am collecting are going to work out beautifully. Soon I will have enough hats to send over as well as stuffed animals we have collected. He will be going there every few months and I am hoping to hear of more specific needs that he saw and maybe we can help with. I will keep you posted. If he sends a photo, I will post it. Thank you for sending hats. It feels so good to reach out to others in need.

I am running here, there and everywhere. Too busy but no rest in sight. I love all the things I am doing but can't seem to find time to sit still. Hunting for more rest tonight so all you sweet friends who have called and written notes of encouragement to me..........I am doing as you told me. Take care of me and get plenty of rest. Off to bed I go.........but only after I do just one more thing. :) I am grateful for my friends. Hugs and love to you all.

Blessing to you. Thank you for praying for Karina. I am hopeful that next Monday we will know more about the pattern her white blood cells are taking. I will let you know.

In His hope,
Dana

Wednesday, July 7, 2010 10:21 PM CDT

This morning DuPont called and suggested Karina receive three daily doses of a drug called Nupogen beginning today. It is a shot given (just like insulin) that stimulates the bone marrow to produce white blood cells. The doctor thinks that three days will be sufficient to better protect her blood until her own blood kicks in. I feel like this is a safe and smart option. Otherwise, the fever would most likely have come in the next few days.

Karina spent the morning with her school teacher then we went to DuPont then home for more school. She is burned out to say the least and I am going to have to make some changes with this school work aspect. Karina is a smarty and knows good and well that it is summer. She needs a break......well deserved.

Thank you for your prayers. It is great to know you are lifting up Karina's needs as I find comfort and encouragement by your faith and support.

Karina and I are doing a hat drive for a pediatric cancer center in the country of Kyrgyzstan that Dwight has become involved with. I am calling it "Put the Cap on Cancer". The center is a residential facility where children and one adult come for the duration of the child's treatment. This could be a year or two, maybe longer. This country has four seasons but a longer and colder winter than what most of us are used to. If you want to donate hats, any shape, size, color, summer or winter that would be so helpful. I will gather them up here at my house and send them over for Dwight to deliver to the cancer center. My address: 9009 Bamboo Court Dover, DE 19901

I hope you all are having a good summer with your families. We are plugging right along and are celebrating our one month anniversary of Dwight being gone today. Clarify........we are not celebrating Dwight being gone, just our successful month.........just in case he is reading this! Smile................

In His hope,
Dana

Tuesday, July 6, 2010 11:17 PM CDT

I desperately need to update you all on Karina and hope that this finds you all enjoying summer as we have been. All the fun has kept me from posting sooner. Braydin and I spent the weekend in MD at a baseball tournament in which the kids did great. The heat wave was tolerable and we had a busy and fun time together. Karina went to the Sones and was spoiled sweet! We joined them by Sunday evening and had a day to hang around yesterday before heading home today.

Karina had an apt at NIH in Bethesda, MD with the endocrinologist this morning which went well. She drew blood and included a complete blood count for our follow up from last Wednesday's apt at DuPont. Karina's white blood count had dropped very low last week and the blood draw today was dangerously low. If you can remember back to leukemia days a level of immunity in the blood is followed when someone is on chemotherapy drugs as the drugs kill the good and bad cells. This leaves the patient prone to fevers and possible infections. Karina basically has NO immune system right now.

We have cancelled our trip to Lake Anna with our family and instead will stay close to the hospital incase of a fever. They strike suddenly and with no warning and often hold no weight as far as a real blood infection but NEVER can we be caught off guard. The boys have taken the news very well. I told them that God will reward they patient heart times 10 when we do get to go in the near future.

My parents will head up to be close by in case Karina develops a fever. A few lessons learned on this is Karina's blood must be checked more often. We recently had 3 weeks off between checks. She has stopped taking a chemo drug she has been on since last Sept. It is considered a low dose but after all Karina' s body has seen nothing is taken lightly. The reins on her care need to be tightened and I feel a bit uneasy right now. We should have seen this coming..............it is preventable. For now, we pray. God has the power to protect her from any sickness and he can. We believe that. Please pray for Karina and no fever in the next two weeks or so as this level begins to rise on its own now that this drug is removed. There is always a chance it is something else that has caused this and we shall soon see.

Thank you for checking in. We will have her blood drawn next Monday to watch for changes. I will post to keep you all informed.

In His hope,
Dana

Sunday, June 27, 2010 9:52 PM CDT

I have to say this single parenting thing is very busy. Better said, this baseball thing is very busy. We have kept our days packed with commitments, friends, lessons, therapy, teachers and fun. Braydin's little league team won their majors division and as fast as that victory was over he made the All Star team again. We know from last year in VA it is fast and busy but a lot of fun. Let the games begin or should I say let the practices begin and lots of them. The first game is the 12th and it is double elimination but with me as Team Mom we are sure to go all the way. Noise makers, signs, car painting you name it.

Karina is doing super. She is looking great and feeling very good. I am thrilled with her energy level and go get'um spirit. Her skin is doing fine and seems to be stable. We have had nearly 3 weeks off and head to DuPont on Wednesday for blood work, doctor visit and breath the medicine for her lungs.

Dwight is great. We continue to Skype every night and it is so helpful for the kids to SEE daddy. Everyone gets a turn to chat, make faces or show their biggest muscles. I think he is having the time of his life really. We are so proud of him.

We had a special day yesterday when Karina's long time friend Allyson and her family came for the day. These two girls have been friends along with Claire who visited a few weeks ago since they were 3. It was a great day together and we are always so grateful for our friends.

We went to church today and they warmly welcomed Karina back. They spoke about answered prayer, healing and God's grace in our lives. It makes me cry every time the overwhelming feeling to know a body of believers is lifting our little girl up in prayer. I did not realize that more than our pastor was aware of Karina's situation. It felt so good to be back.

The kids and I were in the store a few days ago and a beautiful lady and her daughter came up to Karina out of nowhere. She said,"oh, you are out of the hospital. I went to your prayer vigil at the chapel, I work for a friend of yours and heard about Karina so I went. Actually, I have been praying for Karina for 9 months. I saw you both in Sam's club 9 months ago and felt that I needed to pray for this little girl. I did not say anything to you at the time. Then when I went to the chapel to pray, I realized it was the same little girl. I am so happy to see you well." How can I write my hearts reply. Grateful, faithful to pray to our Holy God who hears our every prayer, inspired to pray for others they way we have been prayed for, encouraged that many believe in the power of prayer and their faith is growing stronger through Karina's life.

I wish there were other words besides thank you to express how uplifted we feel. Our burden is lighter because of each of you. We love you in Christ.

Dana

Friday, June 18, 2010 9:29 AM CDT

We had a good trip to my grandma's funeral. It was a celebration of her life but so sad for my grandpa. He is beside himself without her. My parents and sister are visiting him often keeping him company and taking time to be with him. We enjoyed seeing old friends and family members so much and appreciated the many miles they travelled to support our family.

Karina is doing great! Her skin is super and seems to be stable. We are so pleased with her overall health. She continues to have homebound services to complete the 6 weeks of school she missed. She was not happy about this as everyone else is out and about having fun. We are doing our best to balance her days.

I find myself very busy. There seems to be chores non-stop keeping the house running etc..........The boys are having fun at basketball camp but are still playing baseball in the evenings. Their minds are never far from baseball. Next week is VBS and swim lessons. Dwight is doing very well. He is working very long hours and loving his new job. We Skype every evening which is early morning for him. We love seeing him and having a real conversation with him. The kids dance, show their muscles and have a lot of fun with the live photos. I got bit by a tick yesterday and had it looked at by a doctor. No antibiotics at this point because there is no bullseye rash. We will miss spending Father's Day with Dwight this year. I wish all our father friends out there a very Happy Father's Day.

Thanks for checking in and continually praying for Karina.

Blessings,
Dana

Tuesday, June 8, 2010 9:59 PM CDT

Just a quick update on Karina and prayer request this evening.

Karina survived the dentist, three therapies, a trip to DuPont and her homebound teacher today. By 6 pm she was just about ready for bed. Her blood is perfect per her doctor, her spirits are soaring and she looks outstanding in every way. We are so proud of Karina's hard work in every aspect of her life. She is giving it her all. She surprised her doctor with his favorites........reeces cups but the only problem is I have no idea where they came from or how old they were............in the bottom of a purse hanging on the back of her doorknob. She knew exactly where they were to bring today but I had to include a fresh wrapped larger version as to not poison our favorite doctor. He was thrilled and enjoyed a lot of sweet conversation with Karina all while resting on his knees on the floor.

On a much different note, my grandparents have both been in the hospital since last week battling pneumonia. My grandma's condition became very serious and with her congestive heart failure over the years she is not going to survive. Yesterday we received the news just as Dwight was headed out the door for his new assignment that the doctors were going to make her comfortable, turn off all IV's etc.........and just let her pass natrually as she would want. My parents, sister and I are all sad but mostly because of my sweet grandpa who is now going to live without his other half. That term can be used loosely in most circumstances but not when you have been married almost 72 years (July 14th). My grandpa has dementia and is simply devistated as he understands exactly what is happening but can reason why she can't be saved. Our hearts are broken for my grandpa. They both know Jesus as their personal savior and will see each other in heaven one day not too long from now. Please pray for my family for all the details that need to be addressed for planning the funeral etc...., moving my grandpa to a nursing home, alone and for my parents peace of mind.

Dwight is on his way to his new assignment. Braydin finished 5th grade and received a presidential academic award. It was a great family time just before we said our goodbyes. We are all fine.

Thank you for your love and support always.

Dana

update on Thursday. my grandma passed away in the middle of the night, peacefully. my grandpa was with her and stayed with her long after her death. she is in heaven with a new body, parise god. now my grandpa is alone and mourning. he needs our prayer. the kids and i will head down soon as the funeral arrangements are made. thanks for your prayers.

we have skyped with dwight and the connection is outstanding. we love seeing him and feel so much closer with this great feature. thank goodness for technology as it will be a lifesaver for the kids. we are doing well.

Saturday, June 5, 2010 8:48 PM CDT

I hope you all are having a wonderful weekend. We all love the warmer weather to swim, bike and be outside. We definitely appreciate spring after the harsh winter we had. Karina continues to rider her bike, attended a few hours of school 3 days this week(her classmates are so sweet to her), does homework non-stop at the kitchen table, collecting silly bands and keeps me hopping from one activity to another with her. The sassiness has returned..........somehow Dr. Kolb does not have a drug for fixing that and he said if he did his daughter would be on it as well. We love her and the life we have right now, today, contentment. God continues to show himself to us.

Last weekend we had professional family photos done at a studio, sorry Christine and Wendy. I have two amazingly talented friends that have photography businesses and I am shamed to go to a studio. One day, ladies. I have enlarged and plastered photos around the house, a bit over board but ensuring that we do not forget daddy. We are hooked up to Skype on all computers in our house as well as IChat. Covered we are. Dwight's last day home is tomorrow. The bags are very full and there is still more work for him to do tomorrow. We hope to squeeze in a lot of memories.

Karina is doing extremely well. I am always a little apprehensive to talk about the color of her skin. It changes day by day and sometimes hour by hour. This week it has looked extremely good. I could see the whiteness in the dim evening light lsat night in her bed. This evening she is as white as I have seen her since we have lived here. I know our only prayer is for God to take away Karina's GVHD. Her doctor does not think this will happen but I think it is possible in God's timing.

Please pray for my grandparents. I used to write about them more and some of you ask. They are both in the hospital with pneumonia after having bad colds. They are 86 and 89. My grandma was admitted through the ER last night. They gave her an injection of steroids and she went into cardiac arrest. They resuscitated her and she is alive and well today. My poor mom witnessed all of this and had to help make this decision immediately. My mema and pupup do not want to be kept alive on machines. Praise God for precious friends that happen to be in town for the weekend. The Petros' are lifelong friends and the parents of my dear friend Heidi who had the kidney transplant a few months back. They held my parents up this weekend.......thank you.

Thank you for praying for Karina.

In His hope,
Dana

Tuesday, June 1, 2010 9:14 PM CDT

I seem to be jumping through hoops these days, Karina's hoops! She is well and busy which means she is keeping me busy. We had a good weekend preparing for Dwight's departure saying good bye to our friends after a great farewell party. Thanks Heidi and Manson.

Karina got a medical release to return to school part time. After three therapies this morning she was too tired to go to school. I think I was most disappointed but tomorrow is another day. She will enjoy the socialization of seeing her friends. Her homebound services will continue the six weeks following school getting out to make up for what she has lost. I have not given her school the credit it is due. The teachers have been so supportive, we are grateful for each of them. Karina seems to be receiving what she needs and we are pleased.

We had a super special visit from Karina's dear friends, Claire and Morgan. These two girls were my kids first friends when we moved to Oklahoma. The stopped by for the day which was so special.......you can see by the photos.

Each day I seem to notice something about Karina that I have not seen before. There is a fun and happy spirit that seems new every day. As I ponder this beautiful quality I realize that she now knows that we are done trying treatments for her skin. Since we moved here she has listened to Dr. Kolb and I discuss the when and how of the pheresis treatment. We all knew it was coming and the anxiety was more than I realized for Karina. After the treatment started she had to worry about the lines hanging down, discomfort of sleeping with a large tube in her chest, risk of infection etc............now she is done. It is all over and she knows it. What a relief for her and us. God timing perfect. We started and finished before Dwight left. Not quite how we envisioned but this was a prayer of ours from the beginning.

We all have a new peace about our lives. Karina is a precious child of God's and we do not want to alter His plan for her. We once again realized that God's plan is perfect if we pray for it and accept it as it comes.

New photos as promised, long ago.

Thank you for praying.

In His hope,
Dana

Friday, May 28, 2010 8:52 PM CDT

Karina is doing well, doesn't that ring a bell? We had blood work done yesterday which yielded beautiful numbers. As pretty as yours and mine. The bone marrow transplant doctor is keeping her on a strong antibiotic for about 10 more days. I wish not, but this infection really scared us all so I understand their perspective. They also agreed that she could go to school part time as we were before. At this point, Karina is going to be there for the social reintegration and social adjustment vs. learning new material. Karina seems to feel very well. She actually made it through all three apts, the cafeteria and gift shop with her walker. Just last week, she could not have done that. Her neurological tremor remains visible but is improving with increased muscle strength.

This week has been a good week and very busy. There was a farewell dinner for Dwight last night here at the base. Our parents came to town as well as my uncle. It was a fun and funny evening. Tomorrow our street will have another good bye which is the leadership team that Dwight works closely with on a daily basis. We feel loved, supported and cared for that is for sure. I have been given many offers of assistance in anyway while Dwight is away. I am grateful and am certain I will need to call on a few of these friends.

We moved to OK when Braydin was 4, Karina 2 1/2 and Torin 16 months. I enrolled all three kids in mothers day out at our church. Braydin and Karina immediately found two sisters that became quick friends and have remained that way over the years. Morgan and Claire have been such sweet friends to Karina over the years, keeping in touch with cards and phone calls. They spent the afternoon with us today and it was a FANTASTIC tine together. The kids played four square and Karina rode her bike. We are grateful for their friendship and the girls tenderness to Karina. Thanks Dave for taking the time to come and Nicole, we missed you. I will post the photos tomorrow...............falling asleep at the computer tonight.

We are counting down our days with our daddy and the reality is hard to prepare for. I counted candy pieces tonight for the kids to eat one each day while he is gone.

Our current prayer requests are two things. Please heal Karina's GVHD, take it away in your time and give her comfort and a future of healing. Guard Dwight in his mental and physical preparations, carry him through the steps of leadership that he needs, give him rest, speak to the kids hearts as they process his departure.

Blessing to each of you for a Memorial Day filled with peace as we recall those that have gone before us.

In His hope,
Dana

Saturday, May 22, 2010 10:11 PM CDT

Karina continues to feel well. She physically gets tired pretty easily and is using her walker for around the house. Mentally Karina is going strong. She has started studying with her homebound teacher, who we love, and that makes her happy. Just the thought of doing what her classmates are doing is exciting to her. Her school teacher came and gave me a math lesson and we are working on that this weekend as well. Karina has enjoyed a few of her brothers ballgames this week and even tolerated the temperatures. Normally, she is very sensitive to temperature or environment changes.

There is not a place we go that someone does not tell us that they are praying for Karina. It is such a great feeling knowing that many are praying to the God of the universe, the creator of this world for Karina. Thank you all for making room in your hearts to remember and pray for her when all of us have many things on our plates consuming our thoughts. We all have struggles, some more visible than others but no less valid. I enjoy praying for you all as I learn your prayer needs.

We are counting days with daddy home and the number is getting small. There seems to be no way to prepare ourselves other than pray about it, make lots of plans for fun and keep our routine.

Have a great weekend. Thanks for checking in.

In His hope,
Dana

Tuesday, May 18, 2010 8:41 PM CDT

Life seems to be going faster than I can keep up with. Karina is doing fine. She is gaining strength daily and her endurance is slow to return but that is okay. We will pursue therapy here in Dover and not the extensive program at DuPont. My in laws left after a week and my parents came and are now gone. I had a great birthday weekend celebrating NASCAR style. It was an amazing event to experience........many things for all the senses :)

Karina had a doctor apt today and I will see her blood results tomorrow. I expect her counts to be normal. We do not head back for a check up until the 27th. Wow! Dr. Kolb and I had a long discussion regarding the past 3 months . It feels like an eternity since we began pheresis treatment for her skin. It was a long discussion but outstanding in every way. Dr. Kolb has given me many opportunities to say, "I told you so". There is simply no reason to do that. Now that the water is under the bridge, we have discussed ideas that medically could have pertained to Karina but not necessarily good options to prevent infection etc..........There simply is no looking back and all looking forward in all our eyes. God surely would not want us to second guess ourselves when He was intimately involved with this decision. We would be second guessing Him. He guided our hearts as we faithfully prayed for His direction in making this decision providing our hearts peace to move forward. We did and just as He promises He also provided the strength, comfort and joy to get through the tough stuff. May I also say, he provided each of YOU!

I certainly do not have the poetic script to adequately tell each of you how meaningful your messages are to our family. My family members and friends know many of you by your continual messages on Karina's guestbook. I will mention a name and they chime in and say they recently read a message you wrote. The words of encouragement are humbling to me and messages to Karina are filled with love, hope, happiness, motivation and faith. You remind Karina to stay strong, you tell her that you love her and send heartfelt encouragement. I could tell her those same things each day and they would mean little but from each of you they mean EVERYTHING. Thank you for loving our family through your words. The messages build the bridge that separates our many miles.

The website was started around the first of March 2005. The family that signed the first message still signs today. Wow! Karina was 4 when she was diagnosed, Torin was 2 1/2 and Braydin 4 y/o. I sat down to create this website and Dwight said I was crazy to add one more thing to my plate. I was a very busy mommy and squadron commanders wife completely involved and loving what I was doing in life. I ignored what he said (note: this was the first time I have ever ignored what Dwight has said, ever :)) and pressed on. My reasoning was it was a way for people to read accurate information, a reason to not answer my door/phone and most importantly a way of listing specific ways to pray for Karina. Miette, thank you. Matt and Lorraine.........you protected us like mama and papa bears, thank you.

This website has been much more than those three things. It has been my source of journaling, sharing my faith, venting frustrations, thanking others and a source for personal growth. Thank you for walking along side our family with faithfulness and encouragement consistently managing to carry a bit of our burden off our shoulders and onto yours and bringing it all to God. Thank you.

Blessings to each of you.
Dana

PS I am determined to get new photos on with each new entry. Check often. :)

Friday, May 14, 2010 11:04 PM CDT

Karina is doing very well. It is nothing more than a miracle to witness the healing she has had the past 3 days. We spent a big part of our day at DuPont checking Karina's blood levels. Her numbers were all outstanding. We left very pleased. Karina walked a short distance from the parking lot to the coffee shop inside the door. I keep the stroller as our back up plan and over time she takes baby steps further and further. Interestingly, Karina even lost a few kilos of weight. She was happy this evening to sleep on her stomach which she has not done in a month...........but no luck sleeping until about 11:30 pm. That should improve. Karina's skin is doing fine as we are trying to maintain the steroid dose prior to her sickness. So far so good.

Next week the outpatient rehab begins. It is going to be a grueling schedule but we will make the best of it. Three days a week is tough but we will give it a try. I know it will be very good for her.

Tomorrow Braydin has a baseball tournament with his travel baseball team. It should be a fun day. Karina will stay back with my in laws as my parents roll into town late afternoon. Sunday is the Monster Mile right here in Dover. We are excited to attend the festivities with a few extra special treats. The boys will come as well as my dad. When in Rome, do as the Romans.

Thanks for checking in and for praying.

In His hope,
Dana

Wednesday, May 12, 2010 10:28 PM CDT

Karina had an amazing day home today. Her Omi was with her every minute today doing crafts, preparing snacks etc........It was emotional for me helping her with her bath, dressing and seeing her return to her normal routine. She then was off to the kitchen for her morning inventory of the pantry. She always did that and this time she found some treats that her Bubba bought. She is using her walker and tires easily but made it through the entire day. One fifteen minute nap on the kitchen table and she was ready to go. I had a day filed with appointments. We all had a great day.

Our precious neighbors and their sweet children embarked on the house for an old fashioned welcome home party including balloons, fancy cupcakes that read "home sweet home", ice cream and best of all love and hugs. Karina was THRILLED to say the least and we all felt touched by their thoughtfulness. It made a great day GREATER.

Karina continues to have trouble sleeping so if my writing makes no sense at all that's why. I am about to have the Hotel DuPont discussion again in a minute.

Today I have been reminded several times that not only adults are praying for Karina but children, too. There is nothing more pure and sincere than to hear a child pray. It touches us to think about God's openness to receive these prayers. Thank you to all of God's children for praying in trust to their maker and to the parents who have taught their children the value of praying at an early age.

In HIs hope,
Dana

Tuesday, May 11, 2010 9:45 PM CDT

We are home. It was a busy day and a wonderful day. Karina squealed in the car after we shut the door in the parking lot. We prayed. She asked if we thought God was going to take her to heaven this time. I told her at moments that we were not sure if that was God's plan. We talked about how God has a purpose for her life here on earth and that we will continue to live in faith. She asked to listen to a favorite CD that was our tradition after chemo treatments in OK City. Amazing memory and special times. She has hollered out twice in the past two hours and I gently reminded her that this is not Hotel DuPont. She will go back for bloodwork on Friday. Rehab evaluation will be the first part of next week. We are thrilled to have her home. She sat with the boys close together on the sofa for the hour that she was awake this evening before bed. They love her.

Thanks for praying, please continue. Her doctor said today that her GVHD probably will never go away. Hum? God can change all of that if he so chooses. I believe that!

In His hope,
Dana

Monday, May 10, 2010 8:38 PM CDT

It has been a day of highs and lows. The highs won out! Praise God. The excessing steroid dosing over the weekend was indeed that. The doctor that told me on Friday that the dose was to be reduced daily over the weekend changed his mind on Sat morning and I was not told. Foul! Yes! Too late to change, of course. The steroid dose is being reduced instead for each of the three doses she received daily today and tomorrow. We hope to go home on oral doses by mid week. Water under the bridge, yes. Now I pray that God protects her body from the excessive steroids that she has received. My over reaction to many is not that at all. The staff here does not know the past 4 years of steroid doses that she has had. The next dose may be the one that prevents her from walking again from muscle atrophy, allows the pancreas to succumb to diabetes, further depletes her bone density to nothing, excessive high blood pressure, prevents her from adequate sleep, mood swings and on and on. The rest of the day was highs!

Karina's blood work is nothing short of God's healing touch through prayer. Simply amazing numbers. Each of the important levels in her blood were in the normal range including her kidney functions! That is a miracle. The nephrology folks said she may never return to normal levels. Hum? God had something else in mind. Her potassium was a touch low...........easy fix. We each got a donut from the cafeteria to celebrate............I ate mine and hers remains in the bag. :(

Karina kept me from updating sooner because she was so busy. I love to use her as an excuse. She is so well mentally and physically gaining strength daily. Tomorrow she will get her IV out and we will give the walker a try. She is very heavy with fluid from the steroids which makes rehab more challenging. She is very weak in body but strong in mind. We had a visit from a friend today which is always so special, made a trip to the gift shop and she did not enjoy music therapy. That sweet therapist got the stone face.

The spring weather is so refreshing and I can't wait for Karina to enjoy it. I planted a new flower bed under her bedroom window and I am excited for her to see it. Our Air Force community continues to bring a few meals each week and we feel grateful.

Have you ever thought about all of the baby steps of faith we have taken along life's journey that have secured our trust in Him better equipping us for these monster steps.

Thanks for checking in and always for the prayer for Karina.

In His hope,
Dana

Sunday, May 9, 2010 8:12 PM CDT

Happy Mother's Day! My heart sends each of you mom's a tight hug for being outstanding mom's to your children. I could write about each of you this evening and tell you how much you mean to me and what you have taught me over the years. Your example, passion, convictions and character have influenced me and encouraged me to be a better mom. Thank you for being who you are and who God formed you to be. I hope that your day was filled with special memories and moments with your children.

Karina had a great weekend, medically. She is looking more and more like herself. Her blood counts are all in the normal range. The kidney function continues to drop slowly and we may have a new and higher baseline than before. We have a nurse that travelled up from the PICU caring for Karina this evening and she is so amazed to see Karina's progress. She was there in the beginning of the intubation etc..........must make a nurses job satisfying.

I enjoyed my time home this weekend celebrating Braydin's birthday. My parents headed home today and my in-laws came. We can not be any more thankful for their amazing dedication to our family. Dwight is in FL for the week and we hope to have Karina home before he gets home. It will be amazing to be together as a family again. The boys came up for a visit today, the first they have seen Karina since April 17 admittance. Braydin was on the baseball field when I left for the hospital. They are such sweet brothers and they love Karina so much. Braydin was filled with compliments and encouragement and Torin was filled with wonder. He takes it all in and asks all the tough questions about Karina's future. Torin and Braydin have a special compassion for Karina that has grown deep over the years. We took Karina off the unit in her stroller for the first time since the 17th, visited the gift shop, cafeteria and got a quick breath of cool air. Our friends and neighbors came for a visit with their 5 kids who Karina adores. It was a wonderful day for a day in the hospital.

Is it fare to say I am done being in the hospital. I found myself on the phone a lot this weekend making sure Karina's care was on track since I was not here around the clock. I feel a bit blindsided tonight as I was told one of her steroids was being reduced daily since Friday and tonight is was the same high dose as Friday. Heartsick explains me right now and there is a hold on her 5 am dose until I speak with her doctor. Karina is very heavy right now from steroids and she knows that she is big all over from the steroids. What I am frustrated about is that her past history needs to be considered and the excessive steroids she has been given. This drug needs to be in the forefront of the doctors mind and needs to be reduced quickly/safely. We are so fortunate that Karina is able to walk at all. Clinically, she should not have enough muscle strength to hold her up. My heart cries for her to walk again. So much of has been taken and this is a freedom she needs.

Please be in prayer about this and the next few days as we prepare to go hone.

Thank you for checking in and praying for Karina.

In His hope,
Dana
Happy Birthday, Claire.............love, Karina.

Friday, May 7, 2010 10:06 PM CDT

It has been a good day. Karina seems to be sleeping a bit more with three sleepy drugs on board. That will have to stop. I opened a bed in a conference room three doors down the hall and slept 9 hours last night. I tiptoed in her room around 4 and as I tiptoed out, she magically opened her eyes and asked where I was going. I said to sleep. She has remained fever free which is outstanding and a ticket home. She is battling poor clotting in her blood which is requiring fresh frozen plasma infusions daily. This has been going on since ICU and I am not sure how or when it will self correct. The result is bloody noses frequently throughout the day. It can become serious if she were to get injured or have internal bleeding. That issue is another ticket home. How do you make a child eat? I have offered health or junk food, just eat. The last ticket home.

I recently was listening to a sermon by a pastor on TV. He spoke about faith. Hum? Not a coincidence for sure. He gave an example of how we build our faith over years of trusting God for our cares. Little examples of God answering our prayers in our lives and building our faith create a foundation for areas in our live that require bigger steps of faith. I saw this to be true in my life over the years. God has shown himself in my life many times over as I stepped in faith and trusted HIm. It has made Karina's life situation not easier to handle but has allowed me to hand it over with more confidence in His perfect plan.

I am home celebrating Braydin's birthday and my mom is with Karina tonight and tomorrow. I am so thankful for her willingness. I had a neat surprise this week and wanted to share it with you. Braydin entered a Mother's Day writing project at school sponsored by a jeweler in town and won. The letters were judged by the jewelry store staff and Braydin and his friend Kenzie tied for first place. The neat part is Kenzie's mom is a sweet friend of mine battling breast cancer. She is a beautiful mom of 4 that has been fighting for years. We now wear a precious silver heart necklace as our gift from our kids and the jewelry store. Here is Braydin's letter of course printed with his permission.

"My mom. My mom is the best person I have ever met. My mom has had 3 children, me 10, Torin 8 and Karina 9. Six years ago my sister was diagnosed with a life threatening type of cancer. She went through hundreds of treatments and is still battling. If it wasn't for my mom, my sister would probably not be alive. For the past 6 years my mom has done everything for my sister to get her better. My mom gets very few breaks and has a lot of stress with my sister. My brother and me and my dad help my mom and sister a lot, but if it wan't for my mom, my life would be a lot different. That's why my mom is the BEST MOM EVER."

What a boy. I am blessed. Happy Birthday, Braydin!

Thanks for checking in and for continuing to pray for Karina.

In HIs hope,

Dana

Thursday, May 6, 2010 5:32 PM CDT

Karina had a bump in the night with another fever. Her nurse handled the situation very well which we appreciated so much. Today she is up in the chair and eating. She slept most of the morning and afternoon so our night will be one mommy sleeping and one little girl watching DVD's.

Karina's discharge is in the works with two tickets out of DuPont. Eating 1400 calories a day and transitioning to oral antibiotics while remaining fever free. She has two IV lines in at this point and no other areas for possible infection to creep in. We anticipate the first part of next week we should be home. I will keep you posted daily on that optimism.

Karina is quiet but happy. Dr. Kolb brought her a flower today with hopes of breaking the silent treatment she has given him. He figured it would last about 3 weeks according to his level of doctor torture. :) We continue to be grateful for her care here in every way. We strive to encourage and compliment the staff working with Karina as they so deserve.

Dwight is down to 4 weeks for his deployment and the excitement is building. He had a great trip to DC today and we will try to capture his spirit in these last few weeks.

The spring weather here is beautiful and can lift my spirits in an instant with the beach air. Some call it the Dover stink but it is a smell of happy times for me. The rehab doctor agrees that Karina's therapy will be best on an outpatient basis to get her back in her familiar community with friends. I totally agree. I am researching some options for help for her care and transportation to and from therapy which will be up at DuPont. God will provide just what I need while Dwight is gone, I am certain.

Thank you for checking in on Karina and for the prayers that you have said for her. God has chosen to heal her once again and for that we are praising Him.

In His hope,
Dana

P.S. If you check the Journal history for April 8, 2010 you will see the information regarding our fundraising for the Leukemia Lymphoma society Light the Night Walk. Also, there is a biography of Karina that is being used for the Light the Night Walk for publicity.

Wednesday, May 5, 2010 8:14 PM CDT

During my teenage years Contemporary Christian music was making a big impact on the music world and on me. I remember resetting my car radio buttons to Christian music overriding the secular music. It was a turning point in my spiritual walk. I realized then how easy it was for me to memorize lyrics and how those words stick in your mind, especially during tough times. The song that comes to mind this evening is an old song by Amy Grant. "Lord, you know it's been a busy day and I am just weary to my bones. I hope you'll understand if I don't pray, cause i need my rest to carry on. And all of a sudden I knew I would never be longing as long as I am leaning on you, oh Lord, all that i need is you." That is my song prayer tonight.

My mom spent last night with Karina and her nurse and I spoke earlier in the evening about details of the night. We got a call at 1:30 am that Karina had a fever and antibiotics were started and cultures drawn from her PICC line looking for bacteria etc..........Dwight and I rolled over and said, it must just be her GVHD flaring since it was the first day back on normal steroid doses.

At 11:30 this morning, her doctor called as I was leaving the house to head back to DuPont and said he was VERY CONCERNED about Karina.......her fever was 104.1. I asked if her PICC line insertion site had been looked at for obvious signs of infection and was assured it had and all looked fine. I arrived at 1 pm to a sick little girl and very concerned staff. Her vital signs were beginning to decline.........a downward spiral leading back to ICU. I immediately went and undressed her PICC line to find drainage..............BINGO......infection. I blew in like a thunderstorm as a mom with too many years of experience. The writing was on the wall, to me, but the stream of speciality doctors had to be convinced. EVERYONE arrived to assess the situation. By pulling out the PICC line we were cutting of Karina's IV feeding (now she has to eat everything by mouth), easy blood draws (now she has to be poked for all blood draws), two new IV's had to be inserted for medication to be given etc...............It was obvious to me, the line needed to come out. The infectious disease doctor (love her but not her title) said, it must come out.

The IV therapist came and pulled the line out, cultured the area around her skin and Karina has been fever free ever since. She looks great, is acting great and is sleeping right now. Well deserved for her and soon for me. I earned some benadryl tonight. The doctors jumped into panic mode. Plasma was ordered and given, blood was ordered and on hold, high dose stress steroids went in, bolus of fluid went in to keep her blood pressure up and "big gun" antibiotics were started again.

Karina ate some dinner and drank plenty of fluid. She had a few laughs through all of this and seems to be feeling much better. I spoke with the rehab doctor and he agrees that outpatient rehab will be best for Karina. He hopes for 3-5 days a week per the therapist recommendation at discharge. I don't think this situation today will keep us in the hospital extra and we have to pray for healing for Karina.

Karina's body is unable to safely tolerate a central line or semipermanent IV line of any kind. This has been displayed but also leaves us a bit fearful of future sicknesses and options for treating Karina. We are grateful for veins that hold IV's at this point.

On another note, I would appreciate prayer for Dwight tomorrow as he meets with a prominent, high ranking military officer in preparation for his new job. Dwight has been under great amounts of stress professionally and personally the past few months. He has prepared himself for his future responsibilities and we are grateful for the opportunity he will have to lead in this capacity. Where much has been given, much is expected. I am immensely proud of Dwight, his dedication to our family and loyalty to our country.

Thank you for the many cards for Karina. She really has enjoyed listening to the messages and looking at the pretty art work people have drawn. It has been a comfort to her. Thank you APS at Dover for the bulldozer full of cards today. Karina had a special visitor today. We attended a bone marrow drive on base shortly after arriving at Dover last summer. There was a very sweet couple at the door waiting for us, as if we knew them. Jake and Beth have been special friends ever since........Jake is a leukemia/bone marrow transplant survivor............15 years and going strong. He is busier than me and not in his early 40's either. :) He calming presence was so nice today as he witnessed the hecticness of the afternoon. Thanks, Jake for the visit.

My final thoughts......Karina is still asleep. Praise God. Braydin turns 11 on Friday, Mother's Day is coming, Dwight heads out of town again next week, my sweet parents have been the glue this week, our family has been moved emotionally by your outpouring of love and support, Braydin played awesome baseball last night winning by one run, I cheered way too loud and ate yet another lemon snow cone, enjoyed a quiet dinner outside with my mom tonight, the aching muscles between my shoulders is gone, God is good, life is overflowing right now and God knows it all.

In His hope,
Dana

Tuesday, May 4, 2010 10:37 PM CDT

Karina has managed to pull yet another all-nighter! Unfortunately, mommy can not do that for more than one night a year and that party is over! It is so tough for Karina to sleep and this continues to be a problem. They have given her higher doses of drugs to encourage her body to sleep but I am monitoring closely what and how much to prevent more toxicity to her already saturated body. It is a tough situation as we can tell that she is not mentally clear yet. What she says makes total sense but she is not initiating conversation and is not interested in activities yet. I pray that this will all come back in time.

I am home for the night and my sweet mom is "resting" with Karina. I spoke with Karina's nurse and she was sleeping............no, not the nurse.........Karina! Maybe just maybe we are onto the right mix of drugs.

Dwight was under the weather last night and today so we are all praying that none of us get the bug. Tomorrow, I plan on taking the boys up to see Karina after school. I feel the need for them to SEE her and expect her to be thrilled to see them.

Karina was taken off her IV feeding for 4 hours today in hopes that she would have some appetite. She ate very little but it is a start. This will be a ticket home for Karina in the future. The Rehab doctor stopped by today and did an evaluation to consider her for follow up intense therapy. We will know more when we are closer to discharge.

We continue to feel your prayers and seem to feel the burdens of life gently lifted off our shoulders by your petition to our Heavenly Father for Karina. I am off to bed feeling extremely fatigued this evening. I will write more tomorrow and post those pictures I promised.

In His hope,
Dana

Monday, May 3, 2010 1:02 PM CDT

Karina is improving so much so that I ran out of energy to write on this site last night. Her needs are great.........which is a good thing right now in the healing process. In the long run we will have to de-monster her from the neediness. I like to update in the evenings to report how her day was. When I arrived at the hospital Karina was in the chair and smiled when I arrived.

Karina has improved so much from yesterday to today. She is asking to watch movies, is eating crackers and drinking Boost. She looks like herself. I read many cards from our friend Deanna who is a teacher. Her class each year has kept in touch with Karina. The cards were so sweet and Karina actually laughed. There is a special bond between kids, their messages of hope and healing. Karina is also getting to enjoy another third grade class from the church Dwight and I grew up in. Thanks to Mrs. Bethke and Kate, this class has been praying for Karina long before this sickness. Karina is being touched by so many feeling the love and care you are extending.

Karina's blood work is returning to normal. Her kidney function is slowly improving, her high dose steroids have been reduced (one drug for her skin and one drug for the stress her body is under), the IV feedings are being reduced to allow Karina some feelings of hunger. She is very weak as you can imagine but we pray that intense rehab and therapy will allow her to regain her mobility.

Karina's body is still going through challenges from the heavy sedation she was on in ICU. She is awake all night and benadryl and adavan have not made a dent in her sleepiness. Tonight she will try a drug that will help with anxiety and sleep. I was roaming the halls last night at 4 am headed to a parent sleep room after hours of disruption. She has to be tired but maybe it is an exchange one for one.......each day of sedation is a day of awakeness. This is pretty common and not a surprise to her doctors.

We continue to be pleased with Karina's care. We pray each day holds healing as we have witnessed the past few days. God is good. Thank you for your prayers.

In His hope,

Dana

Saturday, May 1, 2010 9:20 PM CDT

i have been home since yesterday afternoon and am grateful for the time home to enjoy the boys and rest. We attended the Old Dover Days parade today and watched Braydin dance the Maypole Dance. Braydin had a baseball game this evening and it went well...............I watched on the edge of my seat with a snow cone. Baseball is a great sport and I loved being a mom cheering him on.

Karina had a good day today. She was helped into the chair several times today. The nurse walked her carefully a few steps to the chair and allowed her to be up and alert. She also is drinking enough nutrition drinks to keep the NG feeding tube out of her nose. Each day will be tricky and it may need to go back in but for today we are thankful. Karina is a smarty.......drink shake = no tube up the nose.

My sweet mother in law spent a sleepless night with Karina last night. We are pleased that she is more alert but frustrated by her irrational neediness toward her nurses and family members. She is smart to know we all will respond to her, still emotionally withdrawn and leaving us feeling a bit abused. These same actions by Karina and feelings from us are all familiar from when Karina had the neurological virus in March 2007. We will have to get through this difficult time with eager anticipation of healing mentally and physically. God provides for all our needs and we will be in prayer regarding this matter.

Karina's kidney function is slowly coming down and we continue to pray that she will not need any further dialysis. Medically, she is stable, still receiving IV antibiotics. The fever never returned. Karina's skin condition remains in good shape.

This evening I received a beautiful guest book from the friends who attended the prayer vigil that was held for Karina last week at the chapel. It is signed by many folks I do know and by many I do not know. It was circulated to the friends who live on our street and signed as well. We are grateful for the time people took to go to the chapel and pray for Karina. I have photos of the chapel that day, the flowers and beautiful set up. Simple amazing to see God's love poured out on our family. We have quietly walked through the past 4 years of struggle with little visibility and to be embraced by this community physically and spiritually has moved Dwight and I. Thank you so much.

Tomorrow I will head up to be with Karina for most of the week. Braydin has a birthday this week, of course Mother's Day is approaching and my parent arrive tomorrow. Our parents are wearing out the pavement between our house and theirs. On Monday, Dr. Kolb will look into inpatient/outpatient rehab for Karina. We may be a ways from that but it is good to do our homework now. There seem to be many prayers day by day and this will be included as her future weighs heavy on my heart. Dwight is still on schedule with his early June deployment. We remain excited about this and know that God will prepare our hearts and open doors for me the help that I will need.

In His hope,
Dana

Friday, April 30, 2010 9:41 PM CDT

Last night was a doozy! It was so good to hear Karina's voice again but by 3 am I was hoping to hear silence. Karina is battling an upset stomach from the "cocktail" of nutrients they are giving her. She does not seem to be in pain about it which is good but she needs attention none the less.

Bright and shining Dr. Kolb arrived this early this morning to report Karina was running a fever and he was ready to remove her dialysis catheter line in her neck. Bed-head and bad breath were not an issue as he prepared a sterile field for the suture removal and pulling of the line. Literally, he snipped then pulled a long and thick tubing out of her neck. The line could be another source of infection hence the fever and the risk of removing it means if she needs dialysis a new line would need to be surgically placed. Her nephrologist was consulted and approved of the decision.

Karina's fever was gone shortly after it came, a new antibiotic was added to the mix of drugs for a few days as long as no fever returns and no germs grow on the cultures they drew. The drug will then be removed.

Karina remains the same overall. Her white blood count is still sky high probably due to the increase in steroids the past two weeks and her kidney function is about the same. Her skin condition is stable and looks fine. She remains in a blah state. She opens her eyes frequently to see what is going on, never cries, never smiles and only says what she needs. She has been drinking a bundle of apple juice but not interested in food yet. The doctors assure us that she will come out of this fog and be more herself. A nurse asked me if it hurt my feelings that she does not respond to anything I ask her, ignores her environment and is silent. It doesn't but I would love to know that she understands what is happening to her, how sick she was and how well she is getting. I hope she understands when I tell her who called to say they are praying for her, who signed her guestbook and how much God loves her.

Tomorrow is a festive day here in Dover. Braydin is dancing the MayPole dance that he and his group have been practicing for months. Our family is attending a tea prior to the parade, walking in the parade (Dwight just told me a few hours ago because he thought I would fuss about needing a new outfit or maybe decline the offer) representing the base and Dwight is speaking. It is an important day to support Braydin and at the same time hard to be a family without Karina. Dwight's mom is sleeping with Karina tonight and I am home able to get much needed rest, read mail and tidy up. I am grateful.

Dwight and I are reminded many times each day by your stories of encouragement to us that we are standing on solid ground with God in our lives steering this ship called life. When it feels we are being pummeled by heartache, disappointment, sadness, grief, stress and pain you are sent into our lives by God to remind us where our faith lies, hold us up in prayer, love us and pray when we are out of words. Thank you for your spiritual hope in God's perfect plan for Karina as you pray in faith for healing, comfort and strength. We feel embraced from all sides of our lives and see how He provides for us in this way. Many, many thank you's from our family.

In His hope,
Dana

Thursday, April 29, 2010 7:12 PM CDT

It was quite the welcome from the bone marrow transplant team when Karina arrived this evening. They "own" their own up here and feel a special responsibility toward these kids in their care for them. We are happy to be here.

Karina remains about the same overall. All her vital signs are stable, she continues to be fed through her veins and an NG tube in her nose. She is tolerating all of it well and they continue to put more in her stomach than her veins. She received 1000 calories today. Daily she should gain energy as she is allowed to eat anything she asks for. So far it has been apple juice and that is a good start.

Karina's kidney function remains in decline but the nephrologist does not want to do dialysis as she thinks her body will kick in soon. The risk of dialysis is great in her eyes for Karina's body primarily setting off an inflammatory response........hence GVHD and other blood pressure and heart rate changes. So we will wait and watch. The doctor is very optimistic about her kidney function returning to normal.

Karina's affect is flat. She does not smile or talk unless she needs something. She does not want the TV on, music playing or read to. She keeps her eyes closed unless she wants to see who is coming or going. She has closed off the world right now and that is okay. She is completely aware of what is going on and the feeling of helplessness must be overwhelming. She appears mad and I would be too.........times 10. There is some connection with her lethargy and her poor kidney function as well as nutrition imbalance. The doctors are changing things daily to get her body in balance. Tomorrow therapy starts..............that should be interesting.

It feels so good to be out of ICU. Now we wait for strength and healing. We have felt incredibly pleased with Karina's care. The ICU is intense and leaves a parent completely out of control but they know what they are doing and they do it well. I look forward to the day that Karina tells us what she remembers, what she felt and we can tell her how God carried her through. He wants her here on earth and we feel responsible to give Him the glory daily.

Thank you for checking in and continuing to pray for Karina.

In His hope,
Dana

Wednesday, April 28, 2010 12:50 AM CDT

It seems that my 40 hours (who is counting?) was 40 days. The quiet, calm, restful time with the boys at home was rejuvenating for me. These difficult days of uncertainty, stress and illness leave parents on empty and we have learned over these 5 years that mommy needs a break. Call us slow learners. :) The load is lighter when shared. I am thankful for my mother in laws willingness to sleep here as well as Dwight's.

I actually have several pieces of good news to share. Karina had her artery IV line removed an hour ago which will allow her to be transferred to the bone marrow transplant unit, hopefully tomorrow. Karina is off all oxygen and holding a perfect oxygen saturation. Her blood pressure medication is being reduced every 30 minutes and she is maintaining a perfect blood pressure during this process. Karina is being fed through her veins called TPN and through the tube in her nose which is bypassing her stomach to offer her very simple readily digestible food to allow her system to be reintroduced to food and digestion. We have had an outstanding resident that has kept us very up to date throughout this process from the beginning. This is a day to celebrate what God has provided.

When i walked in the room, Karina gave me a huge brief smile. Dwight said that was the most he has seen at this point. Karina is silent unless we ask her a very serious question like do you want to be sedated to get your new NG tube in your nose? Her answer was, "make me sleepy." I am personally done with all the sedation. It has been excessive for obvious reasons and I now desire to hear Karina and see her awake.

Thank you to the many friends who have given to our family........the meals, gifts for Karina, snacks and offers to help in any way possible.......even to make my boys a homemade lunch every day and deliver it to their classrooms. This is the embrace that we feel hour by hour. Our words can not match our hearts gratitude to each of you. The kids and I are over our goal already for the Leukemia/Lymphoma Light the Night Walk. Thank you so much for those of you who have donated. Our lives are so full in every way. Where much is given, much is expected. Our physical, emotional and spiritual plates are full and our prayer is that we are walking this earth by faith in God not ourselves.

Why did God pick our precious Karina to suffer on this earth? I will never know but he loves her more than Dwight and I do because he has given her the strength, courage and endurance she needs. We are not promised a life without suffering but we are promised eternal life in Heaven free of pain and suffering to those who ask Jesus into their hearts. I can ramble about the impression we can be given that life on earth, if we are Christians, will be easier, freer of trials and suffering. Wrong. These trials will come to all of us in different seasons of life. We are to choose the tools the Bible offers to see us through. God's promises are solid, real, worthy of our believing, trust and living daily.

In His hope,
Dana

Tuesday, April 27, 2010 9:52 AM CDT

I was able to come home for a good night's sleep and some quality time with Dwight and the boys. They snuck off to school this morning without a peep as I slept in. I will go to meet them for lunch shortly and then get a hair cut before the ball schedules begin.

Karina had a restful night's sleep with Mom Sones. It is so sweet of her to sleep there to give Dwight and I a rest as this road is long and fatiguing. Karina's kidney and bladder ultrasound showed good results. No disease, no dead places and nothing stunningly different. Unfortunately, the kidney function continues to decline slowly which means she will probably need dialysis again later today or tomorrow. This is not all bad as it provides a rest for her kidneys and in a sense a jump start for them after such a serious infection.

Karina's white blood count is also high which makes the doctors draw cultures from her catheter lines that are in her neck (which are there for the dialysis) to see if there is an infection. She does not have a fever and we pray that there is no infection. My gut is that her count is high because of the high dose steroids she has been given for her skin GVHD. This drives up her white count, blood sugar and blood pressure. This is a very familiar scenario. ICU doctors have to be pessimistic and parents have to be optimistic.

I wanted to let you all know that I have spent the last hour on the phone with Verizon tech support and I have not received any Verizon emails since April 22 due to tech issues. They told me I can blame it on them.........the guy was so cute on the phone. So, if you sent me info, please resend it to ddsones@verizon.net or our new account dana.sones@me.com Either way, I will receive it and am so sorry if I have failed to reply.

I will update when I know more. Karina is sleeping all day, so tired and lethargic. They will start feeding her NG tube today to give Karina nutrition which she desperately needs. I pray that she tolerates this without nausea so that she can gain energy.

Thank you for praying for Karina.

Blessings,
Dana

Monday, April 26, 2010 10:49 AM CDT

Praise God today! Karina's intubation was removed this morning and she is doing well. All through the night I heard a lot of bells and buzzers sounding and lots of people in and out as the sedation was weened off and Karina became more alert. A series of things happened early this morning in preparation for removing the life support which were all successful. Karina was crying with a look of anguish on her face, confused and fearful to say the least.

I was able to find the sweetest nurse ever (God's perfect timing) to talk Karina through the ex-tubation process which helped her understand what was happening. I then told her I would ask Dr. Kolb to come as well. She got this huge smile on her face. There is a special bond between a child and their doctor providing a level of trust that is almost tangible.

Karina is receiving oxygen through her nose, has a feeding tube in her nose (NG tube), 3 IV lines, a foley catheter, a large catheter coming out of her neck for dialysis and an arterial line in her wrist monitoring minute by minute blood pressure.

This evening Karina will have dialysis again to see if they can jump start her kidneys into working properly again without the need for continuous dialysis in the future. Please pray for this very serious condition. Requiring dialysis would mean a catheter line in permanently. This obviously is not a healthy option for Karina.

The staff at DuPont remains tops on my list. Karina's recovery will be long but we are one step closer. Thank you for your prayers, love and concern.

Blessings to each of you today,
Dana

Sunday, April 25, 2010 1:24 PM CDT

Time seems to be standing still. Weekends at the hospital are always so quiet and lonely and ICU is all of that. The silence is deafening. Karina will be put on a day by day dialysis starting about 4 pm today. Her kidneys are considered in failure and this may or may not be permanent. After her first treatment today we will watch and see the kidneys response.

Tomorrow the intubation will come out. The setting is very low but still doing most of the work for Karina. She is sedated so she is quiet with her eyes closed. When we move her to reposition her she reaches for her feet to scratch them, rubs her legs and reaches for her tubes in her face. These movements are exactly what she would do if she were awake. Tomorrow we should see a bit of the real Karina come back. Her nurse can't wait to hear her voice. I can't wait either. There will be a weening process from the heavy sedation which can bring on many crazy side effects. She will be very confused, may have heavy sweats, shortness of breath but we will be so happy to hear Karina's confused voice it won't matter. The resident was just in and the staff hopes that this one time dialysis works and she may need no others. That would be the best case scenario.

The boys are doing fine. Torin seems to be deep in thought about Karina and seems to miss Karina and i a little more than usual. It will be good when they are back in school tomorrow.

The Sones just pulled in and are with the boys. Dwight just arrived here with me to witness the dialysis process. Karina is wiggly in bed right now and actually opened her eyes for a moment. She is spacey and cried as we could see in her anguished look on her face. We told her the tube will be out tomorrow.

Thank you for checking in and for your prayers. My prayer for Karina right now is that the kidneys respond to the treatment immediately, that the tube come out tomorrow and Karina tolerates real air or minimal help easily and that her body regains strength rapidly.

Blessings for a good evening as we pray. The sermon I listened to this morning was about prayer reminding me the three reasons that God states in the Bible for answering prayer. He answers according to what is best for us keeping us from sin, temptation, danger. He answers according to His perfect timing as only He know when it is best for us causing us to walk by faith patiently. He answers according to his desire to spiritually develop and mature us.

We are grateful for your prayers.

Blessings,
Dana

Saturday, April 24, 2010 8:10 PM CDT

It has been a long day but a good day. There is really no way to prepare a parent for the moment they see their child on life support. God's presence was evident today as we went in Karina's room. My mom, sister and I walked into Karina's room today to find Dwight and the ICU doctor with two nurses. They were removing Karina's chest tube! Praise God, good bye to one tube. The ICU doctor then said they hope to ween Karina from the ventilator in the next 24 hours. This is very exciting but a cautiously optimistic goal. Often times, a ventilator is slowly weened and the patient continues to need another form of breathing device for short term. We will know more as time goes by. She is on a very low volume of support and tolerating it well.

The next big issue that we are facing is Karina's kidney function. They have taken a big hit with excessive medications and fluid needing processed. We do not know the state of her kidneys and will not know the permanent damage for a few more days. Please pray for no damage, no need for dialysis and lower kidney function levels.

Karina remains completely sedated to prevent her from pulling out her tubes. She has her eyes closed and her hands loosely restrained for her protection. Her blood pressure and vital signs are perfect. Her blood counts are stable and taken every 6 hours.

ICU continues to run like a casino! Her care is excellent. We continue to keep our luggage and belongings in her bone marrow transplant room upstairs as a ray of hope. We do plan on returning to that room after ICU and the staff insists that we keep everything in place up there. What a sweet staff to share in that hope with us, prayerful and spiritual hope! These nurses pray and we are blessed to know they believe in a God of love and compassion, healing and comforting.

I am on the mend. I feel very tired and have not regained my spring in my step just yet. I suspect tomorrow will be a day with more energy. I have no pain and am taking only the required medications to prevent infection and spasms.

The boys are doing well. They are selling golf balls like crazy. They are so happy to have their daddy home but know it will be a while before we have a family meal again. Torin is deep in thought about Karina and Braydin seems to take the facts and moves forward. They each are such special brothers to Karina. I know they are concerned and have said they are praying for her a lot during the day.

Thank you to the many friends who attended the prayer vigil yesterday at our base chapel. What an overwhelming feeling to know so many who are praying for our sweet Karina. Our prayer for you is that you find hope in God's openness to hear our prayers, a closeness to him as you lift up your requests and strengthened faith to know He hears our prayers and will answer them according to his will. Thank you for taking the time to pray for Karina.

Good night.

Blessings,
Dana

Friday, April 23, 2010 5:01 PM CDT

My life verse today, "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy spirit. " Romans 15:13

Karina remains about the same. Her body is battling high blood pressure, electrolyte imbalance from the food they are feeding her through her veins and fluid retention. The fluid reduction the doctors have been battling actually swung the pendulum the opposite direction and now she is dehydrated. The details of the complications is more than I can explain. It is a gamble of drugs and circumstances within her body that dictate what the doctors feel is the best for Karina.

Karina remains sedated to keep her body calm with hopes that the de-stressing of the organs will allow her to heal. She has been more alert and feisty so the sedation was increased to prevent her from pulling out any lines. She has many to choose from if she wanted to pull!

My mom and sister are with her today. Dwight came home for a much needed few hours break after being gone almost two weeks. He will spend the night with her tonight to allow me to heal a bit more. I had the stent removed today from the KIdney stone surgery Wed and the pain was intense for most of today. The muscles are in a constant spasm and a warm bath and hot compress seem to provide relief along with lots of Motrin. I should be fine by tomorrow.

The chapel her at Dover has sponsored a 9 hour prayer vigil today in honor of Karina. I feel a peace over our family that I have never felt before knowing that God is providing for all our needs, Karina's healing and the doctors wisdom. We feel embraced by our Heavenly Father through the arms of this community and each of you across America who are praying. I have not see Karina since Tuesday afternoon and feel a million miles from my "other half". We have a bond through our eyes that provide strength for each of us. I want to see her eyes, let her hear my voice and wrap my arms around her tight. My heart cries out for her to be well, hear her voice and see her smile. Oh, that smile.

My in-laws will come back next week, my parents will come the following week and our AF community is providing meals till eternity...........We are touched beyond words with gratitude.

Please pray that Karina's blood pressure comes down, that she can have less fluid in her body, that her gvhd skin heals (it is in very bad shape right now) and that she gets no more infections. She needs complete healing.

Thank you for praying faithfully in complete confidence that God can heal Karina. We are praising Him in this storm.

Blessings,

Dana

Thursday, April 22, 2010 12:45 AM CDT

Karina is stable right now. They have reduced the level of oxygen she is on through her ventilator. She received a central line in her neck yesterday and today a PICC line in her arm with hopes of removing the central line in a few days. She developed a fever this morning probably from all the IV lines and invasiveness of her care. She is on an air bed to better protect her skin integrity and provide her comfort. She is back on higher doses of antibiotics to protect her from further infections.

Dwight stayed with her last night and my sister is staying tonight. I am home resting after surgery yesterday for the kidney stone. I am tired and on pain medication but healing. Tomorrow I will have a stint removed and hopefully feel more like myself. I will go to Karina tomorrow.

My in laws are headed home for a few days and my parents and sister will stay. Dwight will be around as well.

Karina can hear all we say but unable to move or feel anything. She also will have no memory of this when she is allowed to wake up. Dwight and i feel weak in our human flesh, spiritually and physically, but we know God is might, all knowing and all powerful. He loves Karina more than we do, hard to believe.

Her care is outstanding and she will remain in ICU indefinitely. We know you all are praying and have sent requests to all you know lifting Karina's health to Him.

Our love and gratitude to you all.

Blessings,
Dana

Wednesday, April 21, 2010 8:33 AM CDT

Hello to friends and family,

This is Dana's sister, Debbie, writing for Dana this morning. She asked me to call upon everyone to lift them up in prayer during this diffficult morning. I just spoke to Dana as she was being wheeled up to surgery for a stint to be placed in for removal of her kidney stone. As she is going through this procedure, Karina is in a critical state in the ICU at Dupont. The doctors have inserted a breathing tube and ventilator to help with her breathing. There is a tube draining the fluid in her lungs. Karina is fighting hard as usual and is under the greatest of care although she misses her mom by her side. Thanks to all of you for your faithful prayers.

Blessings,
Debbie Bruck

Wednesday, April 21, 2010 6:46 AM CDT

Oh me oh my! Yesterday I was able to join Braydin for a little bit at a field trip he was attending in Wilmington, not far from duPont. It was so good to see him. As I returned, the doctors were gathering to discuss Karina. She has fluid around her right lung, a large ammount, requiring a tube to drain it. She was sedated again to have it surgically placed and a very large ammount of fluid immediate drained. She must feel better but is still requiring a lot of oxygen. She sleeps most of the time and is pleasant when she is awake.

Just as I was receiving more difficult news about Karina, I developed severe pain in my back. After 3 1/2hours of unbearable pain, I was taken to the ER by the bone marrow transplant staff and they gave me an IV and morphine there, transfered me by ambulance to a local adult hospital where I had a CT scan. I have a kidney stone, 8 mm, that has to be removed surgically today. At 1 am last night I was transfered to a larger hospital with a good urologist here in Wilmington. It looks like I will have a surgery involving a lazer and steent. I hope to leave here late today and stop by to see Karina and go home for the night. My mother in law came up to be with Karina immediately and stayed with her. I miss her and she misses me being there but the calmness of Omi's presence is good for her.

Dwight returns from OK today and will immediately head to DuPont to see Karina. She is about the same and I so want to see her improve today. I am praying non stop for her precious body to heal. This has been the hardest hit we have ever seen and it is very scary. Please keep praying.

Thank you.

Blessings,
Dana

Monday, April 19, 2010 6:37 PM CDT

It has been a very long day to say the least. ICU operates on a very intense level, one in which I am not used to nor do I like. Karina had an IV type line put in today under sedation in her wrist to monitor her blood pressure more accurately. It was difficult to see her put under twice in less than 24 hours but a good decision. She is showing higher blood pressures than what the cuff was showing. This is good. The next step is a foley catheter, possibly, to monitor her output. I am not keen on this for many reasons. Karina is about to receive her third dose of FFP, fresh frozen plasma (not french fried potatoes) which help in the clotting process. This evening she will receive another blood transfusion as well.

this infection has put us close to the edge of disaster and she is not rebounding as fast as I would like to see. This infection is referred to as septic shock. This infection is one that we expected in some ways as we knew that any central line in Karina was a risk for infection. As parents we still feel that this was a good decision to give the ECP treatment a fair try. If we would have ignored this option we never would have known if it would have helped Karina. This door is closed for future ECP treatment. I do feel that Karina's skin is looking very good in spite of this severe infection.

we met our new ICU doctor for the evening and I felt like I got off Thunder Mountain Railroad at Disney after the conversation. Tonight seems to be a critical time for her kidney levels to correct, blood pressure to rise and fever to stay away as it has all day.

Please pray for healing.

Blessings,
Dana

ps you can hit on the journal history to find the last few days of entries.

Monday, April 19, 2010 7:51 AM CDT

Karina had her line successfully removed about 6pm last night with a staff of 7 nurses, the ICU doctor and the surgeon. Her fever is still present which is probably from the GVHD at this point which Dr. Kolb will address today with a high bump of steroids then quick taper.

Karina will remain in ICU until her blood pressure rises. Currently it is 59/38. Some of us adults would pay big bucks for that pressure. The doctors feel that the infection is keeping it low. I personally think that and also that she needs to get out of bed and get moving. She remains on the same three antibiotics but her kidneys have not cleared on of the drugs so she will not receive that drug again until the trough level decreases in her blood.

We are in good hands as always...........just speak the word DuPont and we are pleased. ICU is a bit like a casino without the money for gambling. It is very noisy, the lights are on 24 hours a day, there is a window that does not lead to anything that resembles life, human or natural, an unkept promise that we are moving back to our bone marrow room this morning etc..................

The boys are doing well and seem to carry on with life as normal. When grandparents are at the house they are so happy. We will be in the hospital for several weeks and our two current challenges are to keep in two IV's for her blood draws and antibiotics and deal with the massive loose stool that is a result of the antibiotics. The IV's are not a good solution long term (three weeks) and a femoral line or PICC line may need to go in. Yek, more foreign bodies in the system for the bacteria to live.

Thank you for checking in and praying. God is with us providing strength and hope, brilliant staff and healing. We feel that through your prayers.

Blessings,
Dana

Sunday, April 18, 2010 12:15 AM CDT

Karina was admitted yesterday to DuPont after having a fever of 103.5 while out and about yesterday. Her central line is infected in both lines, gram + in one gram - in the other. Her temperature hovered at 104.7 until 3 am then seemed to come down until this morning when it came roaring back up. She is on 3 high dose, broad spectrum antibiotics to cover her blood from further septsis. Now Karina's blood pressure is very low, 69/37 and lower at times. ICU has been consulted and has come to the room to transfer if her blood pressure does not come up. The combination of high heart and low blood pressure is telling us that the infection is not under control.

My in-laws arrived last night after our neighbor rescued the boys from baseball, fed them and provide a comfy home for them to relax. We are grateful for friends who can help in crisis situations especially as Dwight is out of town. Thanks. The boys are doing great and the Sones seem to pick up just where I left off. A big thank you to mom and dad.

Karina's catheter will be removed, permanently, in a few hours per Dwight and I. ECP will stop and we will have to be thankful for the progress in her skin that was made and pray that the white cells that were killed will remain that way. Karina is receiving a blood transfusion right now as the infection ate up her great hemoglobin, remains asleep, fever (possibly now from the release of the infection from the antibiotic she was just given) and very ready for the line to be removed from her chest. Karina's kidney function just rose dramatically from the antibiotics being used which concerns me greatly since she has healthy organs.

Karina will be put to sleep for the removal of the line, remain on IV antibiotic for 3 weeks inpatient and we will watch her heal. The type of growth is nasty and serious and must be aggressively attacked with antibiotics.

We were due to have our house packed up the end of April to move across the street the first week of May. Life has a way of changing plans. Dwight has been in Altus, OK for a week in requalification training for the KC-135 and has found many old friends and open arms just the way we remember it. He has felt a flood of memories as our lives changed forever with Karina's diagnosis there. In ways it must be healing for him. IT seems every turn of the corner he sees a familiar face, great memories and friends who are still following this website. We are grateful for each of you who have found a place in your heart to remember Karina in prayer. We feel speechless and deeply touched.

The blood transfusion is complete, the platelet transfusion is running and we pray that this volume increase will bring her vital signs up. Today has been filled with stress, fear, decisions and uncertainty. God is so good. As life has been steeling my joy the past 6 weeks or so I am reminded that he is faithful to prepare my heart for His plan. I surely have no vote but what a wonderful God we serve who can equip us with patience, trust, understanding and joy as we go. But, first we have to let Him live in us.

I will update after the surgery later this evening. Thank you for your prayers.

Blessings,
Dana

Thursday, April 8, 2010 3:21 PM CDT

Karina had an infusion of antibodies yesterday and again had a reaction. They checked the lot to see if by chance she was reacting to a certain lot but it was different last month than yesterdays. She is premedicated to prevent reactions but it does not seem to be working. They stopped the infusion, gave her a large dose of hydrocortisone and that did the job. We will try again next month with higher doses of premedication.

Below is a biography I recently typed for the Leukemia Lymphoma Society's Light the Night Walk. This is the LLS major annual fundraiser and Delaware's goal is $220,000. Karina's doctor, Dr. Kolb is on the board of directiors for our state. He asked Karina to be the Hero at the Light the Night walk at Rehoboth Beach, DE in October. We do not know all the details besides this is an incredible honor but have registered online for the fundraiser. As you all know, in the 5 years we have been on this journey, it is not my style to collect/ask/raise money. If you feel led to give to our team here is the site:

http://pages.lightthenight.org/de/boardwlk10/shescured

If that does not get you there directly our team name is "She's Cured" under Light the Night Walk October 16, 2010.

This is such a special event for me personally for many reasons. We missed the first walk due to chemo treatment and the past 3 years Karina was unable to walk and attend. My hope was that we could ALL walk together. Rehoboth Beach was my families yearly beach vacation since I was a little girl. It is a happy place for me filled with memories and to think of walking the boardwalk with my sweet Karina brings tears to my eyes. (I know that is not hard to do these days).

Thanks ahead of time if you chose to donate.

Blessings,

Karina is a beautiful 9 y/o girl who loves to make crafts, bead jewelry,
do school work and wear anything pink. She has a lot of fun teasing
with her brothers and is always up for a game of cards in which she
usually wins. On February 8, 2005, our feisty middle child faced a
diagnosis we could hardly imagine. One winter day just a week and a
half prior Karina developed a fever and was very pale. She had no other
symptoms for the doctor to go on other than these. After a few days
passed they drew blood in our local clinic and were shocked to see her
white blood count was very high. We were sent to the local hospital and
she was put in isolation for a day then sent 165 miles away to the
nearest Children's hospital. It was there that she was diagnosed with
Acute Lymphocytic Leukemia, pre-B cell.

Karina had a great chance of full recovery and living cancer free until
her cancer returned a year and four months later while still on
chemotherapy. This reduced her odds of survival to a low 10% without a
bone marrow transplant. Our family was immediately tested but none of
us were a suitable match for her. The national bone marrow donor
registry was then searched to which there was again no match. The next
step was to research the frozen umbilical cord blood bank for
anonymously donated cord blood from births. We were grateful to hear
there was a suitable match for Karina. On September 26, 2006, Karina
received this life saving transplant.

Soon after Karina's transplant she developed a serious side effect of
the transplant called graft vs. host disease which causes severe
inflammation in the body. Karina's inflammation involves her skin
leaving it red, itchy and inflamed. The treatment for this involves
many medications orally and topically. One day the GVHD will go away
on its own often taking many years. Part of the success of a transplant
requires leaving the recipients immune system suppressed. While this
allows success of the transplant it prevents the body from fighting off
illnesses. In March 2007, Karina developed a neurological virus that
attacked her brain leaving her physically and mentally handicapped.
Over the past 3 1/2 years, Karina has worked tirelessly in therapy to
regain her ability to walk with a walker, talk, eat, write, read and
care for her basic needs. She is a miracle.

Through the tremendous obstacles Karina has faced, she remains grateful
for what she has. Life, faith, friends, laughs, hope and an opportunity
to learn something new everyday. She would go to school in the blink
of an eye any day of the week to be learning, surrounded by friends and
being a normal kid. Shots, surgeries, medication, sickness, discomfort,
fatigue, isolation and hard work have never thrown Karina off track for
her main goal in life.............To run and jump and play again like
she did before. Karina brings joy to those in her presence as others
seem to sense where she has been and where she wants to go. It must be
written all over her face!

As Karina's parents, our road has been long and difficult but not
without many blessings along the way. We choose to accept the things we
cannot change, be thankful for small steps of progress and encourage
Karina's two brother's to love her, help her and recognize others who
have been given challenges in life. Karina's brothers have chosen to
raise money to donate to cancer research at A. I. DuPont Hospital for
Children. We are so proud of all three of our children.

Saturday, April 3, 2010 9:20 PM CDT

This has been a hectic week of long days at DuPont and short evenings. Monday's treatment had some troubles with a new nurse changing up the perfect combination leaving too much blood out of Karina's body at one time. She developed very low blood pressure and the sypmtoms of very low blood pressure and had a period of vomiting. I was angry and told the nurse that I wanted everything that is on the protocol to be done with no changes. Why did she think she could come along and do her own thing is beyond me. Why Karina? Suffer, suffer and I get tired of it. Tuesday was a long day with a breathing treatment for the medication to protect her lungs before we went up for the ECP. We hit Wednesday with one of Karina's catheter lines not working properly. We made it through the treatment with the help of the IV therapy team but needed to stay an hour after with a strong dose of heparin in the line trying to dissolve any particles that may be blocking the line. We think it worked which is great but got us home late again and very tired. Overall Karina's skin remains stable and less red. I know you are waiting for photos but I have not figured out our new computer for photos just yet. If I could be home long enough to fiddle with it, I may have it done.

The boys are deep in little league and I am trying to figure out where and when they need to be at practice. Dwight is in the middle east on a trip leaving me flying solo which I need to get used to. Karina and I are packing the car with snacks, water bottles and school work to her to keep busy as we shuffle them around.

We are excited to be spending Easter with my parents, grandparents and my sister and her family. We had our egg hunt today and watched a series of candy trades going on. Debbie and I realized she took her eggs and hid them out back and I took my eggs and hid them out front so my kids did not get her candy and vice versa. Too funny and terribly trivial. As I was out and about today shopping for Easter treats (and waiting in a very long line for a Chipolte burrito. So worth it when when there is none in DE)I wondered how many people know and believe that Jesus is risen. We believe and worship a living Christ, not dead. Praise God for sending his Son to die on the cross to save us from our sins. The satisfaction of seeing a man dying on the cross to those who dispised him was quickly removed when he rose from the grave. I am grateful for my salvation knowing that heaven awaits one day and my sins are forgiven. My hope is that you too believe. Happy Easter.

Blessings,
Dana

Monday, March 22, 2010 9:07 PM CDT

This is a non-Karina related email but rather a plea for email addresses. About two weeks ago we ordered new computers not realizing that our main computer was about to die. Unfortunately, my address book was not retrieved. My new email address is

dana.sones@me.com

This is a heart sick feeling to not have friends email addresses. If you send me a test email I will capture it. I will also retrieve addresses from the guest book. Thank you!

By the way, Karina is fine. A nurse came today to care for her catheter. Her skin is holding steady. All is well. Thanks for checking in...................and for the email addresses.

Blessings for a great Sspring week.

Dana

Thursday, March 18, 2010 8:08 PM CDT

The past few weeks are catching up with me and I know because I feel mentally and physically that Wed is the end of the week and I am ready for a restful weekend. I can only imagine how Karina feels.

We have had a hectic week. The good news is that pheresis went well all three days. After Mondays treatment Karina received an IV dose of antibodies as she does every 6 weeks. This gives her immunities as well as a touch of vaccination coverage since she is considered unvaccinated. (baby blood has not been vaccinated). Half way through the process she developed chest pain which radiated to her back. They stopped the infusion and administered a light dose of morphine for the severe pain. It was extreme. AS if our day was not long enough. I go out of the room for 2 minutes and come back to two bewildered nurses..............they say, "Karina's catheter line is broken, you can not go home like this (it is not 6 pm) and it may need surgically replaced." Her doctor immediately called the surgeon who inserted it, he came and decided it was worth a try to fix it. If you have ever had surgery, the patient rarely meets the surgeon let alone is he available for repairs 6 weeks later. A. I. DuPont is simply amazing. They practice medicine the way they should, care about children like I have never seen. We were home all fixed up by 8:45pm. Tuesday went without a hitch. Wednesday morning she had audiology and endocrinology follow ups and they went well. The endocrinologist would like to see her off steroids and free of GVHD for a year before growth hormones. This is sad to me but reality. Maybe God will have her grow on her own one day.

This morning Karina and I headed to Williamsburg to visit my family for the weekend. It was time for a change of scenery, a view of the water and down time. Dwight and the boys are in Tampa, FL taking in baseball spring training games.

Thank you for continuing to check in on Karina. She is in great spirits and I feel that the treatment is giving her more energy. It may be a combination of less inflammation throughout the tissue in her body and less energy spent trying to regenerate her skin. The quality of her skin continues to improve. The color looks healthier than in the past.

The boys basketball season is over and baseball is in full swing. Life is getting very busy, the weather is showing signs of spring which we all love. Dwight could use more hours in every day as he continues his current job and prepares for his new assignment in June. There is research involved to gain knowledge and several more training dates between now and May leaving him away from home/work. I ask for your prayers for him as he juggles too much (my personal oppinion). He has an amazing way of balancing his responsibilities but this seems to be alot.

Karina schedule for ECP is now running every other week. She will not have treatment next week. The concept of ECP is that the white cell kill is most effective the first week or two. The rest of the treatment is maintanance. We will miss the staff in some ways as they become friends. A home health agency will come to the house on our off weeks to care for Karina's catheter. She is still not attending school so we are working from home along with homebound services.

Thank you for your prayers. We feel blessed by your friendships.

Blessings,
Dana

sorry, can't find the spell checker.

Friday, March 12, 2010 9:49 PM CST

Karina had a good week tolerating the three days of treatment well. Days were long with lots of driving to and from the hospita. Every minute home was precious. The pheresis nurse solidified the details of Karina's protocol to allow consistency with each treatment. One nurse in the outpatient clinic was assigned to Karina as well to ensure each treatment goes without a hitch. Karina's inpatient nurse from the past few weeks typed the specifics of what is given, when etc........Amazing attention to details and all for Karina's sake. These folks don't have to be asked a thing when it comes to patient care. I continue to be impressed and Karina continues to be happy with each visit. (It also helps that they have an awesome gift shop and yummy cafeteria!)

The surgeon considered restitching her catheter line that previously was stitched to her but opted to leave well enough alone to prevent yet another poke to her skin and possible infection. She was thrilled with that decision.

As for Karina's skin............everyday is a different day. Her doctor has "optimistic vision" wanting so badly to see change that he sees change. I can tell a difference most days but her skin can look beautiful in the morning and lousy by the end of the day. It leaves me feeling fickle! I think that the quality of her skin is better..........softer, more flexible, less inflamed especially in her hands and feet but still a lovely shade of pink. She is not fire red like in the past. She is on her first week of steroid reduction and seems to be tolerating it fine. 10 mg every other day. We have never been lower that this dose since her transplant to my knowledge. Now is the real test. I think the reduction will be slow and steady. I do think the treatment is helping the GVHD. I do think it is going to be a long road of slow recovery which is okay. I still remind her doctor that pink skin and no drugs is success to Dwight and I. We do not expect porcelain white skin if it requires drugs. Dr. Kolb wants both and thinks we can have both.

It has been a good week for all of us. The boys have a few more days of state testing then off to Florida for Yankee spring training baseball games. They are excited. Little league practice is starting next week......somehow it doesn't seem warm enough when there is still recent evidence of the hard winter we had. Basketball is ending with winning seasons. Torin started piano lessons. Dwight is beginning the training and research for his new job. There are many hours ahead of preparation for him. Life is good because God is good. I am learning to see the blessings all around. Thank you for your prayers, friendships and support.

Dana

Friday, March 5, 2010 10:11 PM CST

The three days at DuPont for Karina's treatment went well. I can not believe it is Friday and I am just updating but all for good mommy reasons. Torin turned 8 yesterday and I was not going to let anything stop us from celebrating his day. Birthday signs around the house, a flag in the yard (thanks to my neighbor, Amy) treats to school, special dinner and great gifts to open made his day perfect. Tomorrow is the ice skating party we hope............tonight he has battled nausea from both ends..........that may stop the party tomorrow for sure!

Karina tolerated her treatment beautifully. I have to chuckle at the pampering she receives from the staff and her doctor. They call her princess, her doctor calls her beautiful, they prop her feet up, wrap her in a blanket and care for her perfectly while we are there. The only problem is I can't keep up with the routine at home nor am I enjoying trying. I am always thankful for this precious child that God has chosen to give the Sones family, his miraculous healing over the years and the constant opportunity to see God's love, plan and purpose for us. My heart has been crying for a more independent girl this week. I am praying about this.

Interestingly enough, I think the ECP treatment gives her more energy rather than zaps her of it. Somehow it seems that the process of killing the T cells in her blood which causes inflammation in her tissue is all reduced therefore leaving her with less discomfort throughout her body. Once the nurse unhooks her lines she is out for a walk to the gift shop, cafeteria and even road the battery powered jeep around the unit. I love it. Yesterday we eliminated the daily dose of steroids and she is now on the every other day dose just like before the ECP started. This is a real test or actually the beginning of the test to see if we can begin reducing soon. It will be a slow reduction, per her doctor, to prevent her skin from flaring which would set us back in treatment. We are going to be receiving the treatment all outpatient, three days in a row. We will be doing excessive driving but there is nothing better than sleeping in your own bed, family dinner, hugging the boys (and Dwight) and keeping up with daily chores.

Karina will remain out of school for the next several weeks. That leaves me to teach her which is not my favorite "hat" to wear. I have done it for quite a few years and will keep on it until she can be in school. She misses her classmates and our old routine. One day we will get back to it.

Tonight Karina and I were reading a devotional and the title was Temporary Housing. It was a reminder that our body is a temporary home and we will receive a new body in heaven. Phil. 3:21 "He will take these weak mortal bodies of ours and change them into glorious bodies like his own, using the same mighty power that he will use to conquer everything, everywhere." Yahooooo!

Blessings to you and I pray you see His mighty work in your life as we see in ours as we focus on His will and not our own.

Dana

Thursday, February 25, 2010 10:58 AM CST

Our four days home went very quickly as life seemed to feel pretty normal. We kept Karina out of school and will continue to for the next few weeks until her doctor says we are okay to return. Her steroid dose is being reduced which is great news. Dwight has been in Florida all week and we look forward to seeing him this weekend.

Karina had her ECP treatment yesterday and it went beautifully, flawlessly and somehow left her with more energy than normal. She felt wonderful the rest of the day. DuPont offers a school teacher to kids that are here long term but somehow the unit scheduled Karina for school time yesterday and today. So, Karina will never get away from school work...........it is a good thing that she loves it so much. The nurses think I force her and REALLY I do not!

Her treatment is running right now and will finish mid afternoon. She will then do the monthly breathing treatment to prevent pneumonia and we will be discharged. Her doctor feels that we are on the right path and as long as she tolerates the treatments well, we do not need to stay for observation tomorrow. Yahoo! Next week will be inpatient for her three days of treatment, M-W. Torin has a birthday next week and I don't want to miss the chance to bring in a treat for the class.

My in-laws are holding down the fort, perfectly! Karina asked if she would get to see them before they head home...........she feels like she misses all the fun with them. My grandfather (89) is in the hospital very sick. My grandparent�s assisted living facility is under quarantine for a virus that is spreading too much of the staff and residents. My grandma seems to have missed catching the bug, thank goodness.

It is snowing pretty hard here as the northeast prepares for our 4th snowstorm of the winter. We should be home before the worst of it.

I am so grateful for those of you who so faithfully check this site to follow Karina. It is friendship that has spanned many miles and many years but most of all many prayers. "Thank you" when typed seems so simple and easy but know that the words come from deep in our hearts as a family. God remains our strength to live daily, our hope for Karina's healing and future and our joy to live everyday grateful. You all encourage us to do just that!

Blessings,
Dana

Saturday, February 20, 2010 7:04 PM CST

Karina tolerated the treatments on Wed and Thursday beautifully with no side effects. Friday was a day of observation and rest for her to recover from the treatment. The lower cycle dose of blood from 6 to 4 and lowering the day from 3 to 2 also worked fine. Our challenge is now to undo the damage already done from last week�s treatment. The big issue is to wean her from the high doses of steroids she received to put her skin back under control. It is a daily process and will take about two weeks. Our serious concern is the growth of her cataracts, decrease muscle tone; further loss of bone density, high blood pressure (151/101) is nothing to mess around with in a child and increased blood sugar levels. Karina's body is VERY sensitive to steroids from the past 5 years of use. Her doctor told me once that it is a miracle that she is able to walk from the steroids she has had. That scares me.

The Sones stayed for the week and kept the house and boys running beautifully along with our precious neighbors who brought meals. We arrived home yesterday to attend the boys basketballs games (not Karina), a family style breakfast this morning and two more basketball games with Karina. The day was wonderful. Karina's friend Kara came over for jewelry making which makes any day perfect! We feel so blessed to be home. I have repacked our suitcases just in case but feel calm and assured that we will be home until next Wed. We will be inpatient Wed, Thurs and Friday. Dwight will be out of town this week and the Sones will be back to help me. I am thankful for our parents and sure wish we did not need their help.

I felt God's timing once again yesterday as we were leaving the hospital. Dr. Kolb mentioned that he would be in Orlando for Karina's next treatment but in close contact with the staff if anything arises. He then said he would be at the National Bone Marrow Transplant Conference..........WOW! I asked him to bring home a cure :) He said that he would visit with the doctors from Children's in Seattle where ECP is done routinely. I am excited to hear what he learns.

Thank you for praying for Karina during this rough time. We are still hopeful the treatment can work in time. Karina is in great spirits, weak but getting around with her walker just fine. She is definitely on steroids with the crazy eating habits, anger/tone of voice issues but all tolerable. It was wonderful to be out today cheering on the boys. These baseball boys can throw a little ball at a plate size glove every time but to get that huge basketball in the large net is another challenge. They are having fun and their coaches are outstanding. Life is good..............truly. God is good.

Blessings,
Dana

Tuesday, February 16, 2010 8:26 PM CST

Karina woke today with healing that only God can provide. Her fever was gone, she took a bath, walked to the kitchen on the unit and we made pancakes together, ate three meals, walked off the unit to the Child Life playroom to pick up a new craft then made a trip to the gift shop this evening to find a treat for having such a great day. That is an answer to prayer after the past 5 days of fighting fevers, swelling etc.........God is overseeing this trial as he always does and revealing himself as he has prepared Karina for treatment tomorrow. She will have two days of ECP treatment running four cycles not six then we watch and see the results. WE pray she tolerates this so that we can continue treatment long term and also get back to the normal dosing of 3 days of six cycles each.

One more time for those who have not heard the description of ECP (extracorporeal photopheresis. The American Red Cross runs a pheresis machine that is hooked up to Karina's two central lines. One line is to remove the blood and one is to return it back to the body. The machine removes Karina's blood one pint at a time, divides it into the four types of blood (red cells, white cells, plasma cells and platelets). Once the bodies full blood supply has been removed and divided and returned the white cells are then separated into T cells and B cells. The T cells are the inflammatory cells that are then given a drug to make them sensitive to a high intensity light irradiating them, killing them. Her entire blood volume is returned as well as the dead T cells. This process caused a complete disruption to her GVHD in her skin. It has happily lived in her for 3 1/2 years inflamed leaving Karina's skin red and rashy.

Thank you for praying for Karina. My in-laws are in town taking care of the boys which we are grateful for.

Blessings,
Dana

Monday, February 15, 2010 6:38 PM CST

We are back in the hospital. We were home for the night on Saturday and had breakfast celebrating Valentine's Day. Karina then felt very poor, was extremely swollen all over and then developed a fever. I had been in touch with Karina's doctor reporting how she did through the night including photos of her inflammation that morning and he wanted her back in the hospital immediately. She has battled a fever, some as high as 104, since last Thursday. She has been on "big guns" antibiotics covering all types of bacteria. She has no infections that we know of and all tests have come back negative yet still the fevers persist. Her doctor believes she is having a massive inflammatory response to the ECP treatment. The old white cells that have been happily inflaming in her tissue causing GVHD are now being altered by the ECP treatment and are rebelling. It is a complicated mess, honestly, and her doctor is working hard to fix the results of the treatment.

Through all of this, Karina has been in bed which is not normal for her. I have tried much to entice her out of bed including a blow up pool to put in the shower so she can take a warm bath in private vs.. down the hall. I got new beads for her to make jewelry etc.......nothing has worked so far. Dwight and the boys came for a visit today and even a trip off the unit to see Braydin and Torin did not work. She feels bad, rightfully so. her solution is take out the central line and lets go home. The line is not the problem. Dr. Kolb spoke with the dr at the Am. Red Cross ahead of the phoresis dept and he suggested two days of treatment, not three and four cycles of treatment not six for this week. We will see how she tolerates this and maybe instead of starting with the normal protocol, we will have to back off and go gradually. I personally want to see the massive invasion to kill the T-cells that are causing the inflammation. Interestingly, Karina does very well when hooked up to the ECP machine, it is the after effects that are miserable.

We do feel her doctor is working hard on Karina's case. The next few weeks will be long, much of our time will be spent inpatient. We ask you to continue to pray for her body to adjust to the treatment, for the fevers to go away and for Karina to accept the hardship she is feeling right now, but see and want the freedom from pills in the future.

Our neighbors have provided meal non-stop to the house. We feel so grateful for their great desire to help with meals and the boys. They have each gone out of their way to offer their support. Dwight has taken charge of the thank you notes but if any of you found our site, MY DEEPEST THANK YOU TO YOU TAKING CARE OF OUR FAMILY. I CAN'T WAIT TO EAT THE LEFTOVERS!

Blessings,
Dana

Saturday, February 13, 2010 12:16 AM CST

Well, the week has not gone as planned in our eyes but we are working closely with Karina's doctor to be sure we are on the right track. My comments this week have been along the lines of "haywire" but her doctor feels assured that the first few treatments are going to be rougher as we are disturbing a lot of angry white cells.

The last two days have been filled with issues. Excessive water retention, low blood pressure, blood transfusion, dry flaky skin, red skin, many tests for all types of infections like MRSA, VRE etc..........we are due to go home in a few hours after the blood transfusion goes in. Karina had a dressing change last night over her new site and it is pretty traumatic for her. The cleaner stings terribly and she is very afraid of the line falling out. It is surgically sutured in so there is really no risk of that. There has been much trauma to her body through this process and none of what we expected, honestly, nor her doctor. We are reminded of the fragileness of her body. It has been through much.

The good news is that we have two days at home. Valentines Day will be special as we all tell each other how much we love them. We are due back in on Tuesday morning for three days of inpatient. Dr. Kolb is hoping to do a few things differently to prevent some of the side effects. Karina is sad about her line being in. She does not like a thing about what we have put her through........but we are realizing that our end goal is what we are after. We can't jump ship from this whole process as it is our very last option to heal her skin. The extreme inflammation that she has had in her tissue/skin for the past 3 1/2 years is showing it's unhappiness to now as we are disturbing it. There is a high level of confidence that lies in our Doctor and the staff. Dr. Kolb has assured us by his knowledge that this is the best path for Karina and he medically has explained the transition that is happening in her body. He feels that the process will be long..........many months of treatment...........but successful in the long run.

The boys have had a good week off school for the entire week because of snow. My parents have so kindly been snowed in with Dwight and the boys and taken it all in stride. Baseball for Braydin and basketball for both are getting back on schedule which keeps them busy. I am grateful for the neighbors preparing dinner and a special visit from Heidi and Kara yesterday here at the hospital. I will post that photo when we get home.

Thank you for checking in. thank you for praying.

Blessings,
Dana

Thursday, February 11, 2010 10:13 AM CST

The central line placement went well on Tuesday. Karina woke with some discomfort and very sleepy. We were very pleased with her surgeon and staff which continue to amaze us. The ECP team from the American Red Cross was in her room ready to begin the treatment when we came up from surgery. All went well and the process is facinating to watch. There are six cycles and after the first cycle the blood is chilled before going back in her. It causes her to be instantly freezing cold so by day two we were prepared. Can you imagine cold blood running through your veins? Burrrrr! After yesterdays treatment we went for a walk through the hospital and hit a few vending machines for the perfect snack. She tolerated it well and enjoyed the beautiful white snow everywhere. We are snowed in pretty much. The hospital was desolate yesterday as all apts and surgeries were cancelled. The nurses converted rooms in to sleep stations and most slept her the past two nights. The conference room down the hall was transformed into HOTEL DUPONT for men and women. Too funny. My car is in the front parking lot and completely plowed in. I have a shovel and boots inside my car but that is not going to do me much good right now.

Last night Karina developed a fever. She is now on two IV antibiotics, her skin is bright red, she is shivering and miserable. It is so hard to do this. We were living a beautiful life just a few days ago and to subject her to this is tough. We have to see the bigger picture, the great hope for success to get her off drugs and realize that her life will hold more long term hope if we can heal her skin.

Today will be here third treatment of ECP and we were due to head home this afternoon. The fever will keep us her until at least Sat. The nurse drew cultures to see is an organism begins to grow then they can tailor her antibiotics more specifically. We have every reason to suspect that the infection is in the central line. Dwight is due to leave on Sat for the middle east, my parents are at the house also snowed in, the boys have been out of school all week and should return on Tuesday.

I had an opportunity to share my faith with a nurse, met a neat family battling the evils of cancer for the third time and yesterday grandpa had a stroke, met a dad who is suffering from a hernia that needs operated on and is in the middle of moving all while his child is recovering from a transplant here, Karina's Red Cross nurse lost her husband suddenly 10 yrs ago leaving her with five kids to raise alone.............my burdens are light as I look around and listen. My prayer is that the peace God provided regarding this treatment will keep us stedfast to
the hope that only God can provide. My strength will remain in him. My prayer today is that Karina does not have to suffer, that he take away the fever/infection and allow healing of her skin.

Thank you for checking in and praying for Karina. Sorry for spelling errors, no spell checker.

Blessings,
Dana

Saturday, February 6, 2010 8:53 PM CST

Snowed in! That is an understatement. DE is right between Wash DC's 24 inches and Philadelphia's 27 inches only DE is so windy we have drifts that are 5 feet tall. I may be underestimating. It will probably be a few days until we are able to get out at all. Our street was plowed but we can't get much farther than our street. The boys played out some but it was snowing very hard and was extremely windy most of the day. Our house is covered with snow, the windows are white and it is so pretty. Karina and I may venture out to sled tomorrow.

Karina is in need of prayer. She seems to have a cold/cough that has just developed the past few days. She feels fine but is coughing too much for surgery on Tuesday at this point. The weather may change our plans for this week but we pray not. Our minds are ready to get started and we pray for God's timing not ours. Karina does not seem to be nervous about the surgery but I think that she is. She is pleasant but quiet and a bit irritable. I can tell she has it on her mind. I drove to DuPont to get a sample dressing to place on her skin to see how it reacts. It seems to be fine on her skin but she removed it tonight because it was so itchy. Reengage tomorrow on that one!

We love the memories we made at Disney. It is all a fairy tale in some ways. I can't wait to go back someday. Thank you for checking in and happy Superbowl Sunday1

Blessings,
Dana

Wednesday, January 27, 2010 8:20 PM CST

We arrived home from Orlando full of memories and in good health! That is answered prayers and success any way we look at it. God is good. We feel grateful for the generous donations from many companies to provide for kids through the Make A Wish foundation. We visited five theme parks in five days with travel on each end. Happy tired best describes all of us. The kids got right back into school and the house is humming with all the normal activities.

Karina rode every ride at the parks she was big enough to ride. Her brave factor is 6'3" but her size is 46". It saved us the agony of tell her she could not ride the big roller coasters. It was too funny to watch her. She wore a large brim floppy hat, sunglasses and pink gloves to keep her hands clean. We would see her little pink gloves raised up in the air on the rides and her voice squealing the whole way. She loves a thrill.........We met many characters, got lots of photos and at lots of good food. The theme parks have improved in that area. We felt God's protection and provisions the entire week even allowing us to share our faith with others.

Karina is in a wedding this weekend and she is so excited about it. The dress is angelic and we look forward to a fun weekend in MD.

We will see the surgeon on Monday for the pre-op visit for the line placement in her chest. My parents will be up for that week and I am grateful. Dwight may be out of the country. I am lining up childcare for the boys for the next month. They don't seem to be too concerned with the upcoming schedule.

I will update again after her apt next week. Thank you for praying and checking in with us. I have posted a few new photos.

Blessings,
Dana

Sunday, January 17, 2010 7:47 PM CST

Karina is doing well. Her skin seems to be holding steady. After many months of prayer, we have decided to proceed with the ECP treatment for Karina's skin. Her doctor has been discussing this with us since we arrived in DE back in July and he feels we are nearing a dead end with the reduction of medications for Karina's skin. He feels that this is the best and only option left and we feel he is right. I feel at peace, Dwight is in agreement and most importantly, Karina is ready. It involves surgically inserting a large catheter in the center of her chest which will stay there for as long as a year. The ECP process stands for extra corporal photophoresis and will remove Karina's blood, pint by pint, divide it into four types (white cells, red cells, platelets and plasma) then take the white cells and select the T-cells to be run through a light and killed. All of her blood will be sent back into her, no drugs involved. She should be off steroids soon after, chemo drug goes next then the immunosuppressive drug will go. The risk is the obvious.........infection in her line in her chest. Please pray for no infection. She will be on an intense schedule for the first 4 weeks. Daily ECP (four hour process) three consecutive days a week, then every other week for two consecutive days. The first month we will be inpatient for the 3 days then the rest should be on an outpatient basis. We feel this is important to begin while Dwight is still in DE. WE pray for quick results and hope to be done maybe before the year is up. We don't want Karina to miss school or therapy but we also face logistic challenges if we waited until the summer.

Thank you for checking in and praying for Karina and our family.

Mickey is calling..................gotta run.

Blessings,
Dana

Saturday, January 9, 2010 9:53 PM CST

Karina is doing well and seems to be getting over her sinus infection. She has had a good week at school part time and seems to be her very best when with friends. I must say that her class is so kind to her, patient, helpful and loving to her. She says hi to each of them by name and thanks them for helping her in any way sometimes just moving chairs or desks to make room for her walker. Karina's energy level has been high right along with her spirits.

We are getting so excited for our trip to Disney. This week we should hear about the final details............none of which we are focused on.........all we know is we are going to FL. Please pray for warmer weather for us so that Karina can enjoy the warm FL weather that we are so looking forward to. It is VERY cold here in DE and the wind that blows over this flat state is bitter.

I have to be on Karina about doing her homework, reading and school projects as she has to learn responsibility for her work. Truly, I never thought we were get to this point. She is memorizing her multiplication facts.

Dwight and I have been in continual prayer about the ECP process for Karina's skin. The decision is becoming much more obvious to us that this is inevitable for her skin. For two reasons we feel this way; she is on way to much medicine to continue on this path and we are out of options. With Dwight's deployment coming up this summer we need to begin soon to get the bulk of the treatment under our best before he leaves. We have to commit for a year to have the central line in even though her doctor does not want or expect to keep it in this long. The first drugs to go will be the chemotherapy drug, steroids then immune suppressive drug. Close behind will be the antiviral, antifungal and antibiotic. Shall I go on.......you get the point? The decision is becoming more obvious as only God could change my heart this much. For the past year and a half, I could not talk about this with the doctors or our family without crying. God can move mountains and he has in my heart. Please continue to pray about this as Karina is scared, will to proceed but sacred. She is alert, smart and now a voice regarding her care. Praise God!

The boys are doing well. We had another snow day yesterday and now they have to make up 4 snow days in June. Yek! They are learning basketball skills and Braydin's baseball practice is always good.

We are having a party here at the house tomorrow evening which we are excited about. We continue to love the base community. Dwight remains very busy at work and is preparing for a lot of training for his new job. He is getting excited for his new challenges..........honored to have the opportunity to lead.

Thank you for checking in and know I intend to write more often and somehow the busyness of each day for me keeps me from writing frequently. We cherish your friendships and covet your prayers. Thank you for your loving support. Feb will be 5 years since Karina's diagnosis. That is a long time, faithful friends.

Blessings,
Dana

Saturday, December 26, 2009 9:57 PM CST

I wish you all the brightest wishes for the holiday season! I do hope that your Christmas was a great day celebrating Christ's birth. The month of Dec has zipped by with a record number of parties attended, gifts given and cookies baked. I LOVED every minute of it but it left me a little lacking on sleep (hence a cold the past 5 days which is now resolved) and away from this site. Thank you for your faithfulness to check on the site to check on Karina and pray specifically for her. We are truly so grateful for the friendships established through this site.

Karina is doing well. She is battling her own stuffy nose the past few weeks and just when I think it is going away it gets worse. We will have it checked out on Wed. My in-laws are in town and have made our Christmas extra special. My parents arrive on Monday.

Karina is having a bunch of changes to her medications. She is on a new antiviral drug as they found trace amounts of a virus that they think is a lab mistake but are being safe about it for a while. They reduced her immune suppressive drug because of the effects of the antiviral drug, reducing steroid dose to 12.5 mg every other day and upped her chemotherapy drug if she can handle the nausea. Hum? This is a big drug swap for me and not much to be excited about but the steroid dose is positive and we pray she can tolerate the lower dose without a flare. This group of doctors is so willing to try new things. We are still on the vit D therapy as well.

Karina has had a wonderful holiday season. The snow storm was CRAZY for Delaware as they are not used to or prepared for such volumes of snow. Did I ever say this is a very flat state? The boys were out sledding from sun rise to sun set..............only to come in to eat and dry their snow gear on the 25 minute speed dry on the dryer. They now know how to operate that machine..........yea. We have the only hill that we know of on this side of the AF base in our backyard. It is on the golf course and was a real blast for the kids. The temperatures were not conducive to Karina's body and beading and crafting kept her inside, happy. Yesterday we had mounds of snow and the rain through the night and all day today literally wiped it away. Unbelievable how quickly this happened and what a wet mess we have now. The boys are so excited to find dry ground to try out their new golf clubs.

The other big news I did not share on the last post most of you probably already know from our Christmas card is that Dwight received a one year assignment in Kirgizstan without the family. This is a wonderful job for Dwight making a contribution to the war on terror and the fight for our countries freedom. Freedom is not free. Dwight is so excited about the job, but focusing on the job he has now for sure until his departure next June, or so. The kids and I plan on staying in Dover and we are in prayer about which house we will be able to live in. Karina's medical care is established, the boys love school, the school is very helpful and understanding of Karina's situation/tolerance/attendance and it is easy to live here. It will be VERY hard on the boys and that is my biggest concern. Dwight is extremely involved in their lives, sports and hobbies. We are going to enjoy our lives together and not worry about the future. That is God's job as he will prepare my heart for blessings, personal growth and strength.

Never a dull moment in the Sones household.

The New Year is upon us and a time of rethinking and reorganizing our thoughts and priorities in life. I used to think this was a time of excuses, pressure on one's self and hassle trying to come up with a reasonable resolution. As the years have passed so have those feelings. I do find it a time of reflection and prayer for myself to be sure my life is being lived in a way pleasing to God. I am a work in progress but this time of year encourages me to reevaluate.

I quick story for those of you who have followed this site for a long time.........remember Pinky the Angel that surprised Karina with cards and gifts for years.........well she struck again and this time with a generous donation and purchase of golf balls for the boys. How neat is that! I tell you, our family has been forever changed by the friends we have made through Karina's illness.

Have a Happy New Year!

New photos!
Blessings,
Dana

Monday, December 14, 2009 5:32 PM CST

I have news and it will have to be short and sweet as the holidays have me busy as a bee.

First big news! Karina was granted a "Wish" from the Make a Wish Foundation. Our family will be going to Disney World in January for a week. Emotional, thrilled and a bit nervous about germs. God has this all planned. She was approve in Oklahoma, transferred to VA and was too sick and finally approved again in DE. It will be a very special trip for our family as this was the last place we were before she relapsed in June 2006. Literally we got off the plane and went to the hospital to learn her cancer was back. Praise God for where we are today.

Big news number two! No one has our new address despite me updating the personal sheet on this site a few times. 9009 Bamboo Court Dover, DE 19901

More big news to follow.

Thank you for praying. I will update after Wednesdays apt.

Love and blessings,
Dana

Friday, December 4, 2009 8:58 PM CST

We are well just living hectic busy lives like many of you, too. We spent 4 days in Williamsburg with my parents, grandparents and sister and her family as well as my dad�s cousins. It was a houseful of fun, food and family for sure. Dwight and I had time together Christmas shopping even on black Friday. Anytime we can be together is fun even amongst the hundreds shopping. There really were some great deals and I can see why people wait to begin their shopping season until then.

Karina has remained healthy. I feel that God is covering her in protection to allow her to attend school and be a little girl again. We are grateful. I attended an all day fieldtrip with her and her class where the kids got to act and play like in the colonial days. It was very fun. Today I spent the day in Philadelphia with Braydin on a field trip and am officially exhausted after this week.

Wed Karina had a long day at duPont. I did not get her blood results yet but her doctor was pleased with her skin after the slightly lower dose of steroids she has been on. We are going to leave the dosing alone for a few more weeks. He is willing to add a high dose Vit D supplement that may be effective in helping her skin. My dear friend Nicole who I have mentioned before on this site is always looking and listening for GVHD cures. Her husband Dave is to thank on this one. I am grateful for their interest, knowledge and care for Karina over many years. We will begin the Vit D therapy early next week.

The boy�s press release regarding the golf ball sales left mommy with yet another job...........press secretary. It has been busy dealing with many details of the aftermath..........all great stuff. I met a man who wanted to donate balls to the boys after years of collecting himself. He met me at duPont and loaded up my trunk. Grateful we are!

Our house is bustling with Christmas decorations, gift wrappings, baking supplies, endless lists of what still needs to be purchased and mailed and parties to attend. We are so grateful for our lives, health, home and a savior that makes this season perfect. I am certain to not miss the reason for this celebration.

Thank you for your patience on my tardy entries for this site. I will strive to update a little more often. I seem to wait for big news and thanks be to God for no big news. Karina is attending a bit more school, loving every minute of it. We seem to have the nausea under control which is from the chemo medicine she is on for her skin and we are living the most normal live we have had in 3 1/2 years. Our time is filled with therapies, doctor visits, back and forth to school and homebound teacher. Karina is working so very hard. Her neuropsychological exam results came back and the meeting on Wed told me more of what we already know............the brain took a hard hit, her verbal skills are extremely behind and on and on................in our eyes she is perfect! Perfect in God's eyes and who can argue that. We will wait, watch and encourage Karina for the rest of her life to be the very best she can be just as we tell the boys.

Our hearts can not be expressed through words on this site for the support, prayer, love, friendship and encouragement you have given our family. We love each of you for it and want you to know you make a difference!

Blessings,
Dana

Wednesday, November 18, 2009 7:50 PM CST

Below is the boys UTube clip of their golf ball donation last week. They did a great job.
If you can't hit on the site the title is "Dover, Del. boys donate money to cancer research"

http://www.youtube.com/watch?v=QSbvZ8G5Koc

Karina is going strong and we are so pleased with her energy level and desire to learn. She spends the majority of her day doing school work either here, at school or with her homebound teacher. Tomorrow she will present her book report in front of the class. She picked a special outfit to wear. (Pink corduroys with a horse on the cuff, a pink studded belt, brown shirt with pink flowers and her favorite brown shoes.) I can't explain how healthy she acts and the positive influence school has had on her. We are all so thrilled.

I have a prayer request for a friend I met back in 2003. Her name is Lindsey and she is a beautiful mother of two and battling a second round of colon cancer. She is leaning on God for her strength and could use our prayers.

Blessings,

Dana

Sunday, November 15, 2009 8:30 PM CST

The days seem to go flipping by which means all good things. Karina is doing well. She seems to be feeling really well and we know this by loud laughs, teasing endlessly with her brothers, ear piercing squeals and craft supplies covering the kitchen table. We LOVE it!

Karina and I continue to attend school every afternoon for math and some mornings when it is appropriate. Her homebound teacher comes 2 afternoons a week and we go to speech once a week.

Karina's apt last Thursday went well. Her antibody level was low enough to require an infusion of antibodies. Darn. She received the breathing treatment medicine to protect her lungs and the H1N1 vaccine. All in all she had 5 needles and earned a trip to the gift shop. She is still bruised on her hands and arms from the attempted pokes. So painful for her.

That same day, Dwight brought the boys up to DuPont to present their money from their golf ball sales to the president of the Cancer Research Institute. The have been selling since mid July and reached an incredible $1500. We anticipated that the boys could just give the check to Karina's doctor but no way. The hospital made a HUGE deal about their donation. Radio, newspaper, one senator representative, one congressman representative, the hospital Pres/CEO etc.........were present. The boys had an interview for the radio tomorrow morning and a photo shoot today at the house for the newspaper this week. On Sept 24th a document was read on the floor of the senate in front of the president and then signed by each of the Delaware political figures present. We are having this framed for the boys. The press release is also framed and being delivered tomorrow to the pro shop here on base for the golfers to see what their purchases totaled. We are thrilled for the boys and have a few ideas for furthering their sales in the future. They have learned so much and that is so important to us.

We continue to attend church each Sunday. Words can't explain how much that means to me. Pastor Jeff spoke about storms this morning. Not only have we weathered storms this past week here on the east coast but in our lives. It was a great opportunity to talk with the kids about this afterward. They are not going to grow up thinking that storms won't come in their lives because they are Christians but that God offers the bible filled with truths, comfort and wisdom for dealing with hard times.

We are getting excited for Thanksgiving.............the kids all got good report cards last week.............we watched a few movies this weekend...........had friends over for Sunday lunch................did some Christmas shopping................groceries...............all so good, all so normal and for these simple things we are grateful.

new photos

Blessings,
Dana

Saturday, October 31, 2009 8:57 PM CDT

This has been a very busy week at our house. I seem to have a little life of my own these days and it feels so good to be able to be out and about.

Brief update for those who are new to the website. Karina is cancer free but taking a chemotherapy drug in low dose to try and heal her skin condition. The skin graft vs. host disease has prevented her from getting off steroids and immune suppressive drugs for the past 3 years. If we can get her skin condition cleared up, she can get off steroids, begin to grow again, get her blood pressure back under control and stop the terrible side effects. It is a game of drugs and timing, but we all know that only in God's time will true healing come. We pray for healing cell by cell in her body.

Karina is doing fine. The doctors decided that we need to be more aggressive with the new chemo drug for her skin and really test its abilities. Her new drug cocktail is 15 mg steroids every other day and a dose and a half of the chemo drug on that day. The off day is a regular dose of chemo drug and since Wed her skin is holding its own. The day she receives steroids, her skin looks great and the off day not so good. We have increased her anti nausea medicine to give her better coverage throughout the day. She was really battling the throw ups a few weeks ago.

Karina continues to attend school part time. We are there most afternoons, a morning or two a week and when we are not there, she is at the doctor or doing school work at home. I find that one on one studies are very necessary for her to succeed. Her grades are decent. She requires extra time to complete assignments, does not enjoy reading or writing. Hum? I have my work cut out for me.

We had a speech therapy and physical therapy evaluation this week and with our schedule home programs seem to be our best option. The layout of the therapy center is not as conducive as in VA. Too crowded for my comfort.
We are on a wait list for an occupational therapy evaluation. My heart is focused on Karina's education after the very intense therapy she had the past 2 1/5 years.

We have found a church to attend. I pray we can slowly become involved. We need prayer for protection for Karina. She wears a mask to school and anywhere we go but the flu season could put a stop to the progress we have made. Karina loves to be in school, with friends and learning. Her teachers are simply amazing. They understand the whole situation, protect her with all their might and have told me to drop her off and go. They see no need for me to sit by her and whisper in her ear. I have not been alone without her in a very long time but find the two hours apart is so good for me and her.

We had a great Halloween tonight and our friends Dan and Mary with their three kids came up from VA to join us. What a thrill and treat to be together.

Blessings to you all and thank you for praying for Karina.

Dana

Tuesday, October 13, 2009 10:08 PM CDT

Swine flu, H1N1, pig flu as my kids call it. Whatever it is, it hit Torin this weekend. We made a trip to the local walk in clinic with a fever of 104.2 on Saturday. All plans quickly were cancelled and Torin and Karina went on Tamaflu. Karina as a precaution. Torin went to school today and seems to be back with full energy and it good spirits. He was so sick Friday but this flu seemed to act like all other flu's. Our family was vaccinated for the regular flu last week so we pray that we stay well through the winter.

Karina and I spent the day at DuPont today. Ophthalmology confirmed her cataracts are stable and her vision remains 20/40 which we are pleased with. Cardiology proved that her heart is perfect.............we all knew that but it felt good to get the medical confirmation in this area. Next stop was breathing in the medicine to protect her lungs from pneumonia. The lab then took a gallon of blood to satisfy the endocrinologist request for many tests. Karina's doctor teasingly informed us we were 4 hours late for our apt.........rightfully so and loved her skin. She is on a new dosing of the chemo drug and a slightly lower dose of steroids. We will watch and see her blood counts and appearance of her skin over the next two weeks to see if we can further lower the steroids. It comes at a cost of raising the chemo medicine. A fine balance that I am praying about.

God promptly adjusts my self pity and misaligned attitude each time we visit a children's hospital. I am grateful all over again for where Karina has come, her healing, her amazing attitude, her love of life, Jesus living in her heart, our comfortable lifestyle, awesome brothers whose friendships have brought healing to Karina, her daddy...........the list goes on. God is good. He asks us to be joyful in His plan, not ours. His plan brought comfort during pain, peace during the storm of life, opportunities to witness to those who don't know Him personally, to receive blessings and give blessings. I am thankful for much today.

Dana

Thursday, October 8, 2009 9:17 PM CDT

Karina is ankle is healing nicely after wearing the soft walking boot for a week. She walked in regular shoes all day today and even rode her bike a little. She is battling nausea and vomiting. Our sweet babysitter has hung in there through it all...............we love our babysitter.

Karina's doctor called yesterday to change her medications around a bit. Her skin is definitely responding to the low dose chemo drug she has been taking orally for about 7 weeks. We are increasing the chemo drug every other day and reducing the steroids slightly on the opposite day to see if we can effectively lower the steroids and replace their effectiveness with something else. Unfortunately that is a chemo drug. We are giving her one anti nausea daily to help the sickness. We will watch and see.

Karina has been attending school 3-4 times a week. We are very busy with homebound on top of that and school work for both her regular classes and the special ed work.

I will take the kids this weekend for a short visit to VA to see Dwight's parents and a friend compete in a regional�s ice skating competition. We are very excited to cheer her on!

Karina attended a costume party lunch today with me and out of her many Disney princess dresses and other costumes she selected her Altus (OK) Bulldogs cheer leading outfit along with the real pom poms given to her by an Altus bulldog cheerleader in July 2006. She wore her wig with a big bow and hung the pompoms on her walker. She obviously holds great love and memories for Altus, OK. Thank you Kim Abernathy! (This outfit still fits because she has not grown since then. Her weight has more than doubles at times but right now she is so little. This is good, now she needs to grow. )

We are pretty excited about finding a home church here in town. We have not attended church as a family since her relapse and the joy of sitting together singing, hearing God's word and feeling "full" again is not a privilege we take lightly. As we look at each other, we see the pain, recovery, healing, joy, sadness, sorrow, hope and love in each one of our lives over that past 4 1/5 years. My prayer is that God protects Karina from illness so that we may be faithful to attend and that we feel the rejuvenation in each of our hearts of being a part of Christ's family.

Blessings,
Dana

Saturday, September 26, 2009 1:37 PM CDT

We have had an eventful week at the Sones household. I know we are not the only ones who feel that way. We had four nights of baseball and Karina sprained her ankle in the middle of the week. It has been X-Rayed and is not broken but she is unable to walk on it. We are using the stroller again and doing a lot of lifting. I am so thankful that she is 45 lbs and not 80 as in the past. She is in very good spirits and at times a little frustrated that she can not use her walker. It will heal over time.

My parents and uncle are in town for the Dover international Speedway NASCAR race tomorrow. We all have tickets and my mom and Karina will stay home. We are excited to be with our 150,000 closest NASCAR fans.

School for the boys is going okay. Not the greatest but we are working on the details of that. Their baseball seasons are going well and Torin played his first soccer game today.

My sweet friend Patty is in town for the race weekend and I have had the pleasure of spending time with her. There is something so special about old friends like a cozy, warm winter jacket.

I am in a new Bible study focusing on Daniel and am excited to be back studying with a group of ladies. Karina's home teacher is outstanding and her school work is going pretty well. We attended school two afternoons this week focusing on a math project. Our goal is to attend three times next week. This is so exciting and I pray for protection for her.

Forgive me if I have already shared this with you but I am going to do it again. Before we moved here, we learned our house was on the golf course. The boys figured we would have a few golf balls land in our yard, which they have. They thought they could hang a box over the fence and sell back the balls for $.25. That developed into the thought of what do we do with money............they decided it should go to A.I. DuPont Hospital for Children cancer research. The majority of balls they sell are from digging in the ponds out back with rakes, cleaning them and organizing them for the sale rack. Their goal was $500 and today they hit $1000 after just 2 1/2 months of selling balls. The best story is that the $1000 dollar was donated by my friend Patty and her husband, Mark on their golf outing today. See photos. We are scheduled to present a check on Friday to DuPont.

Thank you for checking in and praying so faithfully for Karina. We feel you prayers and continue to lift our lives up to our heavenly father who with us every step of our lives.

Blessings,
Dana

Tuesday, September 15, 2009 9:15 PM CDT

Karina had a busy day at DuPont today. We began with an endocrinology apt, blood work (which was very painful, two pokes in the hand fishing around for the vein), an audiology exam, breathing treatment of pentamadine then back to the doctor for blood results. She literally walked about 2 miles today with her walker around the hospital and her brother�s baseball games. The result of all this is: no growth hormones yet because the steroids she is on would cancel them out and be non effective, her hearing is fine except she can not hear like a dog in her left ear (no sleep lost tonight on that one), she was bribed with a trip to the gift shop to breath in the yucky medicine for her lungs..........again. 36 treatments of the stuff are enough to make her sick of it............rightfully so. Her blood work looks better than mine for a full year straight now. No need for the infusion of antibodies since she seems to be making some of her own for the first time in 3 years........Praise God for this miracle.

We arrived home in time to take the boys to their baseball games. Karina amazingly stayed awake, happy and willing to work on homework until 8 pm. Her skin looks beautiful this evening I actually took photos to send her doctor. In the past everything looks red on camera but these are too good not to try. If her skin is truly improving then it is the new drug she is on called gleevic. It has a great reputation for curing other leukemia's and other serious illnesses so we are hopeful with the 50% success rate of helping GVHD patients. We are praising God for each baby step of healing.

I am posting Karina's birthday photos. Tomorrow her teacher will come to teach her which she is so excited about. We have not attended school yet as we wait on the green light from the school nurse.

I am exhaustedly off to bed tonight feeling God's peace, comfort, presence and hope for tomorrow.

Blessings,
Dana

Friday, September 4, 2009 9:35 AM CDT

We have had a good week but very hectic. So hectic that I sent the boys to their first day of private school with bright white socks which looked like neon orange amongst the sea of navy blue and green uniforms. Then sent Torin in gym uniform on the wrong day. I am navigating my way through rules and regulations of drop off and pick up, policies etc...........It is all good just details that this week had no room in my brain for.

Torin had the throw up bug for a day and a half thankfully recovering quickly and no one else in the house following suite.

We had two evenings of baseball games, boys, same park, same time, different fields. That works out so nicely. They are enjoying the season so far. Braydin had a double play last night.

Karina and I were at DuPont on Tuesday for a simple day. There have been a few changes to her medication list. She will no longer have to breathe in pentamidine once a month but take a daily liquid medicine instead. She has done this monthly for three years and was thoroughly tired of doing it. This means less time spent at the hospital. Yea. They have removed 3 daily doses of blood pressure medicine which is unbelievable. We are thrilled about this. Karina is no longer on the IV low dose chemotherapy drug pentostatin but has started a new oral chemo drug called gleevic. These are all possibilities for reducing her skin GVHD. We again are hopeful, cautiously. Please pray for results, healing and freedom from the chronic redness, sores, cuts, itchiness and discomfort of her current condition.

Karina's birthday was yesterday. She had a nice day eating at Olive Garden for lunch, taking fruit and cheese into her class for a celebration and having cake in the front yard with our neighbors. They are so sweet and spontaneous, popped open a card table and BOOM, we had a party. Karina felt special.

Tomorrow is the big party. Our friends from OK who retired and bought a farm in the area are bringing their two horses to the backyard for rides. Karina has her cowgirl boots and hat on today in preparation. Should be a super day with Karina's friends.

Karina's doctor gave her permission to attend some school. We are working with the school nurse, her new teacher and the homebound teacher on a schedule. Her homebound teacher will come on Wed and Friday's and we will attend as much school as we can.....safely. The school will be notifying us of viruses going around etc...........We will have to be very flexible.

There have been so many blessings her at Dover that I need to tell you about. I will tell you one now and save a few for another day. Dwight was asked to speak at a base wide meeting and part of the meeting included the kick up campaign for a bone marrow registry drive on the base. He was asked to speak as part of his position here on base, not because of Karina. He obviously felt compelled to tell folks to come and donate because it saves lives............it saved his daughters life. Last Friday was the drive and they registered over 700 new donors. That tells you about Dover AFB and the folks who work here.

Our family was featured in the base paper after this "speech" from Dwight as a way to encourage others to donate. Our family�s photo was enclosed and a neat article with quotes from the kids. Through this I was contacted by a sweet lady who wrote to tell me that her husband had leukemia and had a transplant 14 years ago. Not by chance was this lady a Christian who has encouraged me, but she arrived to the minute when we did at the bone marrow drive and was waiting at the front door. I did not know who she was because I had only emailed her but she knew who we were because of the photo. God is good, her husband and Karina are alive and we rejoiced together!

Blessings for a great weekend. Dwight and the boys have a 4 day break and I do to! It has been a good week with my parents here as well. They were so helpful to me this week as one mommy could not have done it alone. They are filled with love and energy for our family and we are grateful.

Blessings,
Dana

Thursday, August 27, 2009 2:20 PM CDT

We seem to be on the pre-school tizzy this week. The boys will be going to a private school and making that firm decision two weeks before school starts is a trick. The uniforms are purchased, the paper work is turned in, the teachers have been met, physicals done, shots given........then we found out both boys have summer reading book reports due the first day of school. I had one of the 5 books needed, not a good batting average. This week we are getting those reports done.

Karina seems to be doing okay. It has been a long week of slow recovery with energy which in turn determines her attitude. Tough act to balance for her at times. She has been fever free until last night....103. Who knows what that was about since this morning she is good as new. The four antibiotics pills a day is taking care of the blood infection so our guess is that it is GVHD related. Steroids will fix that but this doctor is much more conservative about giving steroids. We will watch and see. She is starting school work this week as well.

Tomorrow is a bone marrow donor drive here on base. There was an article in our base newspaper this week with Karina's story. I am praying for a successful drive.

I have more to write but out of time. I will update again in a day or two. I have to give my self more time these days it seems...........life is good. Please pray for my grandmother as she is in the hospital again with an infection. Thank you.

Blessings,
Dana

Sunday, August 23, 2009 8:46 AM CDT

Well, Karina had a fever through the night on Friday........103, 101 and 99 by morning. I called the doctor and repacked our suitcase belongings. The doctor on call and I agreed to wait a bit through the day and see how she felt. The fever seems to be gone for now, the antibiotics are supposed to be very effective for her type of staph infection and she is much more alert and content. She says that she aches all over and does not feel very good. I do think the antibiotics are hard on her stomach causing a stomach ache.

We will go to DuPont on Tuesday for blood work. We have upped Karina's steroids for two days to get the skin under control. It is very dry and pealing like a snake. The boys have left for their trip and we are going to make the best of three days of girl time................

Thank you for your prayers as we see God's healing power once again in Karina.

God is good............all the time.

Love,
Dana

Friday, August 21, 2009 10:12 PM CDT

Shoot! We have been home 7 hours and the fever is back. It appears that she needs more IV antibiotics and we very well may be headed back in tomorrow. DuPont was a outstanding and honestly not a bad place to be if you have a sick child. I feel so bad for her as she is dragging. I have enjoyed the bit of time home that we have had...........unpacking, tidying up the house, seeing the boys, attending a party this evening and just getting caught up at the house. I will update more tomorrow. thank you for praying so faithfully for Karina. We feel your prayers.

Blessings,
Dana

Thursday, August 20, 2009 5:34 PM CDT

It has been a challenging week for Karina. She woke on Monday evening with a high fever.....104. We had a scheduled apt for Tuesday morning in which we came up and they promptly admitted her. We are still in DuPont after dealing with a bacterial infection in her blood. She has had been in good spirits overall due to the amazing staff here at DuPont. There is a level of care here that has made our stay so pleasant.

Karina has been receiving doses of broad spectrum, high dose antibiotics. The sensitivity of the specific antibiotic needed to clear her blood of the infection is due back tomorrow. We then will be heading home.

We have had the opportunity to share Christ's love for us, God's healing power and our testimony of faith during our stay. We have met a family that has suffered from GVHD greater and longer than we have leaving us thankful for what Karina has been granted. She has attracted a lot of "looks" with her skin which is back to a tomato red, but her sweet attitude and cheerful smile has caused others to see beyond the skin. God has provided a new level of contentment for our family.

Dwight's parents were in town this week to spend the day with the boys during her Tuesday apt. When the doctor admitted her, the Sones quickly changed and cancelled plans to stay for the week. Dwight and I are beyond grateful for their time and love this week.

We have been considering private school for the boys this year and decided on a school that will academically challenge them and include biblical teachings. This was a big decision in which God clearly placed people in our path to confirm our decision. God is good and the boys are excited. Now I am scurrying around for uniforms and my in-laws are getting school supplies so they are set. I wish summer was not over yet.........I love our time at home together.

Dwight will be taking a trip with the boys to the Little League World Series next week. This will be their third annual trip and what a great tradition this has been. I am so happy for them.

We are in the right state, the right hospital, Dwight in the right job, living in the right house in the right neighborhood and surrounded with people that God has placed in our path. We are WELL.....

Blessings to each of you,
Dana

no spell checker.....sorry

Monday, August 10, 2009 9:41 PM CDT

Karina battled a fever all weekend. I spoke with a doctor over the weekend and he suggested we wait it out a little longer. This morning I spoke with her doctor and he thought it best to bring her in for IV antibiotics and blood work. She tolerated it all well but complained of stomach pain on the way home. High dose antibiotics can be hard on the tummy and she felt that today. We felt so blessed to be coming home instead of being inpatient. If her fever returns then we will need to go back up tomorrow for a second dose of antibiotics.

I posted a few photos.

Thank you for your prayers.

Blessings,
Dana

Friday, August 7, 2009 9:44 PM CDT

We are home after a wonderful vacation to VA beach with the Sones side of the family. Dwight was unable to come along which allowed him to work, eat and sleep...........

My parents took Karina to Williamsburg for the weekend while the boys and I headed to the beach. Karina had a super visit with my parents and my sister and her family. She had her cousins all to herself and the spoiling of her grandparents. Thank you to Debbie and my parents for allowing the boys and I time together in the sun.

The timing of our vacation was perfect as the boys needed varacela vaccines and had to be apart from Karina for 72 hours since it is a live vaccine. They tolerated the shots without complaint.

While at the beach (literally), I got a call from Karina's new doctor. He called to say he would be on vacation this week and his partner would be seeing Karina this week. Our conversation lead to the possibilities of the ECP blood treatment. After asking the "tough" questions I felt completely overwhelmed at the realization that we are closer to making a decision regarding the start of this process. Her doctor has his mind made up, in my opinion, but I do not! The benefits are that we would see immediate results in her skins redness and the ability to get her off steroids. The drawbacks are the high risk of infection because a large catheter would need to surgically be placed in her chest with tub that runs up into her neck. Blood infections are a guarantee with a foreign object in her body from our past experiences. The doctor said we would deal with these with high dose, broad spectrum antibiotics and expect her to be in the hospital a lot. The conversation left me feeling like we were going back in time to the dark days of the past. The infections would cause her GVHD to flair.............I am writing in circles because this is the pattern we would face.

Thankfully, my sister in law, Laurie was with me and the boys at the beach. We talked about the conversation and she said, "Let�s pray about it now!" We drove back a short distance to our cottage and joined with the Sones in prayer about Karina. Laurie prayed for a miracle for healing for Karina. Later in the evening the cousins all prayed for Karina, our mental preparation, decisions and wisdom.

The few hours were very tearful for me. I fully believe that God hears our prayers, answers our prayers in his timing and somehow always lets us know he is in control. Three things happened in two days that confirmed that God is present in our lives! During our family dinner that evening, Dwight's cousin who is a cardiologist discussed another type of fistula that may be better for Karina with less risk of infection. I felt encouraged. My friend Nicole called the next day while I was driving home to DE with the kids and said that she had recently heard of a drug being used in Israel via IV that was helping people with GVHD. Then the next day we are up at DuPont and the new doctor that we were seeing said, "I have a name of a drug that has recently shown some benefits for GVHD but we have to read further and discuss it with Karina's doctor. Let's think about it." That is God, my friends!

This doctor was chatting with Karina very sincerely and asked her if she liked music. She said that she liked Christian music. He immediately got excited and they had a great conversation about it. What a blessing to finally meet a doctor that I believe is a Christian.

Karina needs our prayers. Our family needs prayer to make the right decisions for Karina, following God's prompts, and encompassing Karina's heart and soul to continue to fight this fight. She is tired, her life has been halted, her suffering has been much and all she desires is to live a normal life.

Dwight just reported that she has a fever of 103. I am off for now. Thank you for praying for Karina and our family. We are grateful.

Blessings,
Dana

Monday, July 27, 2009 10:04 PM CDT

Thank you for the amazing guestbook entries. It is so special to read them and just today Torin was taking off a shirt that was given to us by a friend in Altus named Sarah A. We talked about her today and boom! There was her message. Kim O., Karina has asked everyday when I plan on calling you to see your farm and maybe go for a ride. I am so grateful for the encouragement that we receive from each of you.

Karina was not feeling well on Thursday and Friday. It was Dwight's birthday and I was praying that she would just make it through the night to allow us to celebrate together. We had friends over for dinner and they were the healing touch along with prayer..........Saturday morning she was better. Praise God. Yesterday I was very mentally and physically exhausted realizing that her health remains so tender that it is exhausting to me mentally. We go for a few weeks of feeling well then the dreaded fear that she will be in the hospital with a fever or infection. I need to continue to give my cares to God.

The boys are signed up for baseball. Torin was not interested after a lousy season in the spring being placed in the wrong level. Now we are going to try to recover his self confidence and love of the game. He will also play soccer here on the base to try something new. Dwight is crazy busy and loving his job. We went to the pool today and the boys were showing off their swim lesson skills. Karina could not tolerate the cool water temperature but was happy with her feet dangling in the water with a towel covering her skin to prevent sun exposure. Tomorrow we will hit the bowling alley. Things are not crowded here and we feel so much more freedom to be out and about. We also attended church as a family on Sunday. What a thrill and milestone for us.

I am still transferring prescriptions, opening bank accounts, making doctor apts, registering for school etc.......while trying to have fun with the kids. The kids and I will take a vacation next week and join the Sones family for a reunion. Karina may stay with my parents for a few days.

We feel so blessed to be living back on an AF base. We feel right at home, warmly welcomed, safe and happy. Karina's health may be facing a turning point if we choose the phoresis treatment. She gets very upset if we talk about it which I am glad about. It is so wonderful to have a child that can tell us what she thinks.........she has come so far. Have you ever met someone that seems to be unhappy about everything in life, complaining, negative, ungrateful and miserable to be around? I want to shake them and remind them what an awesome God we serve, one that has the power to heal, one who carries us through good and bad times, one who has a perfect plan for us, one that promises us eternal life, so much more than what we see here on earth, one who forgives us of our sins..........but since I can't shake that person I must choose to live what I believe and pray that others will see God's faithful love.

Thanks for checking in. Updated the contact info on this site. ddsones@verizon.net

Blessings,
Dana

Wednesday, July 22, 2009 8:57 PM CDT

Yesterday we made our first trip to A.I. DuPont for Karina's doctor visit. Dr. Kolb and his team were very impressive. Our apt was very prompt, timely, professional and friendly. They took great care of Karina. Unfortunately, valet parking did not take great care of my car............minimal in the grand scheme of things.

Karina's doctor is scheduling every apt imaginable to learn more about Karina. Neurology, endocrinology, ophthalmology, rehab (OT, PT, ST). We are beginning to make those apts. He is reserving his decision about school for a later date simply because of the flu situation currently. We are fine with that. There is much to discuss in the near future regarding treatment for Karina. This doctor feels that Karina will not get off steroids with pentostatin alone. Darn! He does feel that ECP which is the blood dialysis procedure is going to be the only option. Darn! This requires MAJOR time commitment, a large risk of infection to Karina.

Needless to say, we have alot of praying to do regarding this decision. Karina cried this evening thinking about the future of this and the decision is not made yet. She totally "gets" the involvement, the continued absence from school and a normal life, the fatigue involved in the process, the surgical procedure to receive the catheter etc...........I told her that we need to pray for the current medicine she is receiving to work its very best, for God to know and see her future and prepare our minds to make the correct decision, prepare our hearts to accept what is best for Karina and then we would not be afraid or sad. Please pray with us.

Karina's doctor from Children's National in DC called up to DuPont yesterday while we were there which was extremely kind. When her new doctor told me this I told him he wanted to know that Karina was okay and that her mommy did not take off for the Caribbean. Dr. Kolb, her new doctor, is getting to know me well as I openly share my medical heart as well as my mommy heart. We are tired and it shows in my discussions with him. He is a father, doctor and caring man. We are thanking God for a great hospital and doctor. Somehow, his message of Karina's future care seems easier to digest.

The boys are doing well. Dwight is very busy at work, loving the job, purpose, people and mission here. Several times a week he is receiving planes on the flight line of fallen soldiers. It is a sobering place and reminder to pray for those bravely fighting for our freedom.

My parents have been here this week and we finished up the details of the house, painting and hanging pictures. We all love their company!

Thanks for checking in. Soon, I will post new photos. I find my days busy with the boys home, daily chores and keeping up with life. We love our new neighborhood and friends. God is good.

Blessings,
Dana

Thursday, July 16, 2009 8:23 PM CDT

Karina is having a great week. Her skin had a spell of hatefulness but seems to be clearing up and she feels well. She is enjoying her friends so much in the neighborhood as they seem to have beading marathons at the kitchen table. I will snap a few photos and post them soon.

Dwight is working hard and loving his job. The boys are finishing up baseball camp and were a bit disappointed with the lack of structure, bad language used by kids and coaches, unsportsmanlike conduct etc........needless to say, we are going fishing tomorrow to get our hearts back focused on who we are as Christian young men. They are smart boys, shared with Dwight and I the events they were seeing and mature enough to explain it to us. I am proud of them.

My parents are coming this weekend and I am hoping to do some painting with my dad to make our house a home. We are all loving Dover and our new friends. We do miss our old friends, though.

I feel settled in the house and am ready to get into a routine. Karina has her first doctor apt at A.I. DuPont on Tuesday and I am excited to meet the new staff. The boys were due to get a second chicken pox vaccine but Karina's doctor said not too but instead get a blood draw to check the antibody level to see if they are covered enough without the shot to prevent Karina exposure of them receiving a live vaccine. Today was a rough day for the boys.

My prayer has been for God to take away Karina's GVHD in his time and with his power. I pray that our family is a witness to those we meet and those that are watching of Christ's love. Human nature is to ask why? Karina, why? our family and any indication that our faith is showing and leading other to Christ through the word of God reassures us the answer to that why? question. We deal and struggle daily with patience adjusting to our new "normal". God quietly reminds us he is with us, loving us and caring for our every need.

Blessing,
Dana

Friday, July 10, 2009 8:28 PM CDT

It seems that I have completely ignored updating this site but truthfully the last week has felt a bit like one day all hooked together.

We are moved into our home in Dover, DE and just about settled in with things in place. It was a fast move with lots of work. Many things have happened and I will update you.

* The moving truck left our house in VA at 12 am and arrived in DE the next day at 10 am.
* Omi and Bubba took great care of the kids .........Karina had the throw ups for 2 days to add to the busyness.
* They also oversaw all the details of the house in VA being cleaned, new renters etc.......
* Braydin's all star baseball team was not able to advance but played great baseball and had a lot of fun
* Our good friends the Hagedorn's stopped by for a visit in VA to see the kids........Karina was sick the whole time, how nice it was to have a doctor with her since I was not.
* The kids are in love with the new house, back yard on the golf course and neighborhood friends
* We have been so warmly welcomed here in our new neighborhood. The food they brought makes my meals look like a chef Boyardee special!
* We are learning our way through Dover and find it a nice easy place to live
* I took all the kids on Tuesday and headed back to Children's for a long day of apts
*Karina's skin is okay.............not super but holding steady. Still on 20 mg of steroids every other day.
* Braydin wants to know if daddy's C-5 has a horn to honk for when he is flying over the house.
* Karina has made two wonderful friends that are 12 y/o who love to do crafts and bead.....heaven on earth for Karina and answered prayer for me.
* the boys are taking golf lessons, attending baseball camp next week and swim lessons for all three the end of the month. We felt unable to do any of this in VA for a variety of reasons.
* I have not sat in traffic since we left VA
* We miss our neighbors and friends in VA
* We have heard about a church or two to try out soon
* I am on the hunt for a couple babysitters

Through all of the transition, God has been present in each step of the way. We have met Christian's who have openly shared their faith with us allowing us to do the same. We feel God paving the path before us and that we are on the right path. The neighborhood has warmly embraced us leaving us without a moment of wonder that they are our friends. We are so grateful for God's provisions for us, safety, health (which keeps us in perspective), Dwight's job and our home. The kids are happy and doing great.

Thank you for your patience as I was delayed in updating the site. With any move there are set up issues with electronics and we had those.

This evening I realized I had not gotten the mail in a few days as Braydin carried in two armfuls of mail. On top of the entire stack was a card from a dear friend, Lisa R. The note was filled with encouragement, love, care and support. Lisa is an angel on earth, reaching out quietly, knowing just what a friend needs to hear. Thank you! Now I need to be that friend to others.

Blessing,

Dana

Sunday, June 28, 2009 10:22 PM CDT

The days are flipping by and the move is about to happen.......tomorrow the packers come. We reminded the kids that this was their last night sleeping in this house and our new adventure is about to begin. They all seem just fine with the move. The house is as ready as we can make it.

Dwight just returned from a two week trip to frantically prepare for the move. We should have the long 4th weekend to unpack while the kids enjoy time with their grandparents.

Braydin is hot and heavy into the All Star baseball world. The team has practiced hard, won their first two games and have two games to go. They basically need to win one of those two and they advance out of our district to regionals. It is mighty late and I am mighty tired but I think I have that straight.

Torin is reading up a storm..........he got the bug after I told the kids I would like them to read more this summer and he is doing it. My motive is to get Karina excited about it. Time will tell if my tactic works. He got bit by another tick yesterday. That is three for him even with bug spray on............that bothers me.

Karina's apt on Tuesday went fine. The day at Children's is so excessively long and sometimes unnecessarily long but so be it. We will make one more trip back to DC in two weeks then off to DuPont. Her skin was looking rather good and today it went haywire. The doctor reduced her steroids another small amount and I am thinking I am going to go back up to the previous dose to keep life smooth for the move. Tomorrow may be a whole new day for that skin. Her very big and exciting news is that she was asked to be a flower girl in a cousins wedding. There is not much in life that makes Karina more excited than being in a wedding. A little girls dream.

Karina has been in good spirits, sitting at baseball games on the bleachers (her first), making jewelry for friends, bickering with Torin and enjoying family times. We had a wonderful evening at the Sones with Dwight's brother and cousins. Please remember Bruce (and his wife Laurie) in your prayers as he heads off to Iraq for a year with the Army.

We continue to lean on God's promises to guide us as we seek His will. We have been praying for the plans he has for us in Delaware, friends for our kids, teachers, neighbors, babysitters, doctors, wisdom for Dwight in his new job and safety as we transition.

Thank you for your patience as I have not updated as often as I would like. Once we are moved in I can get back on track. Thank you for continuing to pray as our earthly hope for Karina lies in this new drug. We pray for continued and long term success.

Blessing to each of you.

Dana

Wednesday, June 17, 2009 9:03 PM CDT

I am afraid to look at the date of my last entry. The time is flying as we busy ourselves with preparations for the move. There is much detail involved with the move for Karina's care and it is all falling into place so much so that I feel like I am forgetting something.

Dwight is busy training for his new job. I am keeping up with all the "lasts" of school, therapy and friends. On Monday I went to Torin's end of the year school party and learned that the flu was traveling around the school in a serious way, including Swine Flu. I took the boys out of school right then and have kept them home this week to their dismay. Braydin especially has been sad but understands why. Torin decided quickly that this is all okay......more legos and more Wii. They will go in tomorrow to pick up their report cards and empty their desks. It is a sad time because of moving but they will be fine.

Braydin tried out and made All Star Baseball for our area and is practicing 6 nights a week for the next two weeks. It is great fun for him and I love to see the higher level of coaching. Well worth the time invested and we are excited to see how far the team goes.

Karina had one night of sickness and woke up the next morning feeling fine. I am convinced that the nausea is from the low dose chemo drug and its late effects. She will receive her 7th dose next Tuesday.

Our packers come on June 29th and Dwight, Braydin and I will be in Dover on the 2nd. We will come back for Karina and Torin when the house is settled. We are very excited for our move.

Thanks for checking in and continuing to pray for Karina.

Blessings,
Dana

Thursday, June 4, 2009 9:21 PM CDT

Karina has not felt too well the past two days. She had a spell of throw up during the night and just sort of wiped out the past two days. She is in good spirits otherwise.
We will watch her and see. There are a few possibly causes. The reduction in steroids a week ago. Steroids can serve as anti-nausea or the typical 7-10 days post effect of the chemo drug or a virus running its course. WE will watch her and see.

Dwight and Braydin went to the San Francisco Giants baseball game this evening against the Wash. Nationals to see Randy Johnson pitch his 300th win! What an evening for them, rain and all.

Tomorrow Karina heads to the dentist for a cleaning less her 8 extra teeth. The new permanent teeth are mostly in but still very crooked. They may shift a bit in time. Karina will join her class for a photo as a gift to their teacher. She is so excited to see her classmates again.

Please pray that God will continue to show us his plan for Karina's life. It is so obvious to me that Karina is mentally and socially and physically ready to be in school more. Our prayer is that her immune system (as small as it is) can meet the challenges we are offering it. I know God will show us as we move forward.

The moving plans are going well. It is a very busy time for us as we prepare etc..........We are so excited about the move.

Thanks for checking in and faithfully praying for Karina's journey.

Blessings,
Dana

Monday, June 1, 2009 9:25 PM CDT

Just a little update to let you know that Karina is doing really well. I am realizing that there was a lot of anxiety brewing over the past month for her waiting for these teeth to be pulled. I did not realize this........note to self. She has been extremely happy, talkative and eager to participate in whatever is going on. I think part of this is the relief that the teeth are out.

Today Karina's friend Allyson, her mom and baby sister came to play and that is so special for her. We love their company and the boys do, too.

Karina's mouth is all healed and she is back to normal. I will snap a picture soon and post it. She really looks different now. Tomorrow we will spend a few hours in school which she is totally excited about. Karina's skin is looking really well. It has to hold out another week for the doctor to see it. Her steroids were reduced by 2 1/2 mg every other day. That is a baby step but significant in the fight against the skin. We can not cure the skin but we can suppress it enough to get her off steroids. She desperately needs to grow, have lower blood pressure, lower blood sugar and feel better.

We are beginning to say good-bye to dear friends this week. As excited as I am about our move, it is going to be sad to say good-bye to those who loved and prayed for our family during the past three years. We met wonderful families here and reacquainted ourselves with old friends from growing up in this area.

Dwight is preparing for a bit more training for his new job, the kids and I hope to get to my parents (and sisters) before the packers arrive on the 29th. All is going so fast now.

Thank you for your prayers, words of encouragement and support through this website.

Blessings,
Dana

Thursday, May 28, 2009 9:40 PM CDT

Karina has a new smile! Today's dental visit was successful and her smile less 8 teeth is great. It was a very long day for her as we began the day with little/no food, a therapy session then off to Walter Reed. The placement of the IV took longer than the extraction of the teeth. The staff was amazingly gentle and patient working with Karina. They nearly agonized over the perfect vein to begin her IV sedation. They made her comfortable in the chair and were finished with the procedure before I could buy and finish my Subway sandwich. I have to admit I was a bit uneasy about the "whole" procedure today but have to say my faith was small. When I walked into the room and saw her wide awake, mouth filled with gauze, smiling at me with her eyes and looking like a million bucks..............I praised God for his faithfulness to carry her through yet another obstacle. Thank you for praying for her today and me too!

We had tons of traffic coming home which made our day excessively long. I am complaining but she did not! Karina ate a bundle when we got home and felt like seeing Torin play some baseball. We stayed at the game a while then headed home for her a dose of Tylenol, a bath, more food pills and bed. Torin asked if he could sleep with her tonight to keep her company. Such a sweet boy.

I can not close until I share my heart about Walter Reed. Karina had 4 inpatient stays there in a 6 week period of time the month we moved to VA in preparation for her transplant. While there, we would sit and watch the wounded soldiers missing limbs play touch football with their artificial limbs on the front lawn. We loved watching the fun these men were having after severe trauma to their bodies and minds. I remember a specifically moving time for me there watching a man who had recently lost both legs (because he was still in a wheelchair) with his wife and kids in the cafeteria. The look of anguish, loss, grief, pain and despair was very apparent to me as they made their way through the lines. If you ever question the ongoing war to protect our freedom, just take a drive to the front of Walter Reed and you will see no less than 3 soldiers missing limbs hanging around the front of the building. It is emotionally moving to be in the presence of warriors who are willing to take the challenge of defending our country. There are spouses and family members making sacrifices to care for these brave men and women and tonight they are in my prayers.

If Karina's feels well tomorrow, we plan on attending a field trip to a natural park with her class from school. She is so excited to be with her classmates.

Thank you for praying for Karina.

Blessings,
Dana

Sunday, May 24, 2009 9:01 PM CDT

We are alive and well just busy. I am sorry for not updating along the way the past 10 days or so. Many wonderful things have been happening in our lives and I will update you. God is good.

Last Sunday Karina and I had the honor of visiting my in-laws Sunday School Class at the church that Dwight and I grew up in. This class has been praying for Karina for a very long time, often sends gifts and cards to our family reminding of us of their faithfulness. Karina was thrilled to have this opportunity to even be physically back in a church. I did not realize how emotional this visit would be for me. Just to know that this body of Christ has loved Karina so much to pray for her was overwhelming for me. The tears flowed as we walked into the room. I was completely moved by their love.........Christ's love for Karina. They presented her with gifts, photos and a very special prayer for healing for Karina. We quickly left and I quickly returned to verbally express my gratitude to this large group of people who we appreciate so much. The tears flowed more as I said thank you. This group represents the love God has for his children.

Dwight and I took a quick three day trip to DE to scout out our new hometown. We had successful appoints with her new bone marrow transplant doctor at A.I. DuPont Hospital for Children, the kids new pediatrician, Dwight's new boss, old friends, visited the local elementary school and most importantly stopped at the local TJ Maxx! I am totally set. The town of Dover was super. Very friendly people, great shopping and restaurants and 38 miles from the beach I went to every summer as a kid. We walked through our new home which was so pretty. We feel blessed by God's provisions as he paves the way ahead of us.

After a day home, we geared up for a weekend at Lake Anna. Our dear friends have generously lent us their amazing home for a weekend of fun each summer. Thank you so much Dan and Mary. Our entire families met us there to relaxed and play in the water. It was so good for all of us. We are home and recovering from a great week. Unfortunately, Karina got a very large sunburn blister on her right wrist where her shirt sleeve pulled up and she did not have sun block on that part. Her entire body was covered to protect her from the sun, but her wrist got it. What a scary thing for us to see. It does not hurt and we are praying that we can keep the skin underneath from getting infected as it heals. This is her first injury since her transplant Sept 2006.

Our agenda for the next two weeks consists of cleaning out closets and drawers before the packers come the end of June. Dwight will be out of pocket much of that month so the more we accomplish now the better. Moving forces purging!

Karina is doing well. Her skin is BEAUTIFULLY pale red. I am so pleased with the color of her skin I feel sure that her doctor will begin the reduction of steroids on Tuesday. She will receive antibodies as well as the chemo drug for her skin this week. Thursday, Karina will have 8 baby teeth pulled under sedation at Walter Reed. Please pray for her (and me) as we navigate different doctors, sedation and possible pain for her. I am praying for a smooth day. It is all too much for this little girl to tolerate but God keeps her spirit sweet and body strong.

I have more to tell you but it will have to wait. Know that Karina is doing well, needs prayer this week for her body to accept yet more chemo, antibodies, the sun blister to heal and teeth to be pulled. We continue to praise God for each accomplishment in Karina's life, His guidance in our lives and faithfulness to love us when we are so undeserving.

Thank you for praying.

Blessings,
Dana

Thursday, May 14, 2009 1:37 PM CDT

Karina and I made our way into Children's for her apt on Tuesday and proceeded along with the IV and fluids. After a bit of waiting, the chemo drug for her skin was not in. The pharmacy made a mistake so we instead cancelled her therapies for yesterday and received her drug yesterday. She took it like a champ and with the ant nausea, she did super. She is full energy today and doing well. We made a stop at a very fun local kids store today and she selected something special for her good attitude for the past two days.

She had a million questions and concerns the other night allowing us to have a long and serious talk about her health. It is rare that she brings up the obvious..........red skin, lots of pills, lots of doctor visits etc.......It opened up the door for me to share with her how much God loves her, cares for her, knows every detail of the timing of her healing, our faith, the freedom to pray and believe that God has the power to heal her. She is maturing, cognitively healing, dealing with other children's stares and unbelievable comments and her desire to just be a normal little girl. We hugged a lot, prayed and felt God's Holy Spirit present as she accepted my answers and God's truth. What a complete joy for me to be able to talk to Karina knowing that she understands and believes in God's plan for our lives. Whether that is for 100 years on earth or 100 days, he has it planned for our good and offers us eternal life in heaven.

Karina's steroid dose remains the same. Her skin is okay, not great but we should not expect quick miracles from this drug but slow steady progress. I do think we are seeing that.

Thank you for checking in and for praying for Karina.

Blessings,
Dana

Saturday, May 9, 2009 8:22 PM CDT

Happy Mother's Day to my dear friends who have taught me by example how to be a better mom, encouraged me through tough times, made me laugh when I felt like crying, loved me when I was very unlovable and prayed when I was out of words. These women are mature, passionate women who works inside their homes, outside their homes, have home businesses, more college degrees than I can count on one hand and love life. I admire these women for their passions for life, their convictions to make something wrong right, their creativity, their humor and their ability to give of themselves unselfishly. Happy Mother's Day, friends.

Karina is off to my parents for a quick 24 hour trip allowing the boys and I to head to a Yankee baseball game tomorrow. Braydin turned 10 this week and this was a gift to him............and to me. :) I am looking forward to being outside for the day with them. Karina was thrilled to have special time with my parents. They love and spoil her so sweetly..........smart girl.

May is a wonderfully busy month for us. I will keep you posted after Karina receives her 3rd treatment this Tuesday. Please pray that she does not feel so poor after. I am noticing a four day trend of lousy energy afterward. I pray she feels stronger and that the doctor feels her skin is ready for a steroid reduction.

I posted new photos.

Blessings,
Dana

Friday, May 1, 2009 9:37 AM CDT

Karina received her second dose of the new drug for her skin. The doctor was very pleased with the overall color tone of her skin on Tuesday. He wants to move cautiously and slowly to reduce steroids so if her skin continues to show improvement by next Tues the 12th then he will begin the steroid taper. Great news. Karina's skin has hateful days, like today, but then moments of softer red. Our apt went well and Karina's blood counts remained solidly in the normal range for all numbers. Praise God for this.

I have been very busy with the details of our move which is scheduled for the first week in July. The medical side of this transition is definitely the most challenging. I have researched and contacted a Children's Hospital in DE and have had all her medical records sent there. We have a meeting with their chief of bone marrow transplant doctor on May 18th without Karina but to get a feel for the doctor and facility. By phone and internet, I am all but sold. I was very impressed with many aspects of the staff and facility but will have a better picture when we see it. We will take Karina at a later time.

This transition has been heavy on my heart and prayer life since January. I have felt calm, peace and the verse about being anxious for nothing in my heart since then. I have had different thoughts on which hospital, which doctor, when, how, where etc..............weekly. This week, I have felt the holy spirits guidance reassuring me that God does care about these details and He has directed my path for sure. The administrative side of Karina's care is among my least favorite things to do. It takes time and energy among which I often have little. Hence, my delayed updates on this site.

Braydin had a bad cold this week but seems to be doing better. Torin is growing daily, I think. They both love their baseball season and we are very busy with games and practice. Braydin is doing track and field after school. Karina and I are trying to go to her classroom once a week on Fridays. I am thinking twice about today because of the swine flu. We must be so careful to not unnecessarily expose her. Some risks are worth it, like a trip to the circus!

Dwight completed his training in the C-5 aircraft and is qualified to fly. He worked very hard in TX, loves the airplane and is excited to fly once we get to Delaware.

Karina continues to work hard on school work and seems to have plenty of energy daily. We feel blessed for her health and continued progress.

Thank you for checking in and praying for Karina. We feel your prayers and care for our family. Thank you.

Blessings,
Dana

Wednesday, April 22, 2009 12:53 AM CDT

Karina has had a very good weekend and week so far. The effects of the drug last week seemed to last about 3 days with fatigue and one night of vomiting. Her doctor said he will give her an IV dose of ant nausea before the next treatment.

I am beginning to think more seriously about our transition of care to Delaware in a few months. Time is ticking and decisions need to be made. Karina's school will begin an IEP for her which we will take to her new school.

Karina seems to have a lot of energy and is in very good spirits. Today we both seemed to think that her skin is looking better. She felt so encouraged by the sight of her less red skin. It is still pink but not bright cherry red as the past several months. Her spirits soared today when we talked about it in the bathtub and she has been happy all day. We hold high hopes for the new drug and pray that God leads us as we follow.

The boys are loving baseball season and it keeps us very busy in the evenings and Saturdays. The all American sport and we love it.

Spring is on its way with some warmer temperatures and crazy rain showers. Everything is green including our cars with a constant dusting of pollen.

We are well and praising God for life today. Have a great day as you seek and follow Him.

Blessings,
Dana

Thursday, April 16, 2009 9:02 PM CDT

Karina had the infusion of her new medication on Tuesday. She had an hour of IV fluid prior, the medicine which ran for 30 minutes then another hour of fluids. She tolerated it well but got throw up sick around midnight. She did not seem to feel bad up until that point but for the next infusion, she will be pre-medicated with an anti-nausea med to prevent this from happening again.

She has not slept well this week so she is very tired. I am not sure if she does not feel well from the new drug or is tired because of poor sleep. Anyway, if she is tired then I am tired. :)

I get bothered about her lack of energy very easily because it reminds me of days past. Her spirits are good but she may be concerned about the new medicine and is not saying. Her body is now processing another chemotherapy drug (it is a low dose) but none the less hard on the body. The study that I have read states that steroid reduction should happen around the third treatment so that will be in about 5 weeks. I am anxious for that to begin so that we can rid her body of one major and nasty drug.

It is so hard to know what is right as a parent making these decisions. Her doctor is looking way down the road trying to prepare me for the damage to her skin that we will see. He wants her skin to not be scared and damaged and rolls his eyes and puts his head back when I tell him that is of very little concern to me. I want her to not suffer the permanent damage of steroids and not have cataracts, her body to begin growing again, her blood pressure to go back to normal, reduce the risk of diabetes and for her to emotionally feel like herself again. Red skin and scars don't scare me. I am praising God that she is alive!

Today my prayer is for her to sleep soundly, to regain her energy, to think beyond herself and her needs, desire independence in her life and know how much God loves her.

Thank you for checking in and praying for Karina. Your messages are so encouraging to us.

Blessings,
Dana

Monday, April 13, 2009 9:07 PM CDT

Where is the time going? Life has been so very busy for me with lots of things, generally good motherly type things. Note to self.........don't put a dozen items on craigslist at one time.

We had a wonderful Easter celebration and I hope you all did as well finding joy in knowing we are forgiven of our sins and will live life in heaven one day all because Christ died on the cross and rose on again. Our kids are learning year after year and we pray for their continued spiritual maturity.

Karina is doing just fine. Her skin remains about the same overall with slight improvement on areas of her body. She has been moody lately for no specific reason other than a lack of excitement in her life. After being at my parents and playing with her cousins for 5 days I can see why. Life here at home is a lot of therapy, school teacher, chores and taking the boys to baseball. That is life. I wrestle with the balancing game in Karina's life. She seems so challenged by activities, stimulated from new situations and always ready for a new experience but I can't keep up on a daily basis with that. There is a big part of Karina's healing that deals with independent contentment. I want her to learn to be curious and find things to do with her imagination. She can not do that yet so we are working on it.

Tomorrow we begin a new medicine. I know I mentioned my conversation with a doctor at St. Jude who suggested yet another medication. After discussing this with Karina's doctor here, he felt that too many children on that drug were discontinued from the study due to kidney problems. Karina's organs are healthy and we need to preserve those as best we can. We will stick with the drug originally recommended called pentostatin. It will be given to Karina every two weeks via IV. The side effects are nausea and vomiting but possibly none. We are praying that this drug will allow Karina to get off steroids, not necessarily heal her skin. Only time and God can do that. We just need her off steroids.

Thank you for your prayers, friendship and faithfulness.

Love and blessings,
Dana

Saturday, April 4, 2009 8:42 PM CDT

Boy, if it is not broken don't fix it. The famous old saying. I had trouble getting into this site to update but I surely can not use that as an excuse for not journaling to you all.

Last week was a great week of fun activities that kept me very busy....Air Force commitments and seeing old friends. I have the kids this weekend at my parents and we are enjoying welcoming in the spring like temperatures.

There are several updates on Karina, medically. Without going into the details of the research, confirmng, questioning etc...........Karina's doctor agreed to begin a new drug (not new on the market) in two weeks. It has been used in a study at Johns Hopkins with success in treating GVHD. It will be given every two weeks via IV possibly for a six month peroid, weining as the skin improves.

I also spoke to a doctor at St Jude Children's Research Hospital regarding Karina and they mentioned yet another drug. I emailed Karina's doctor to confirm that we begin the best drug available for Karina's skin. Many thanks to the Petros family for the contact and direct phone number to a great doctor.

Karina's skin is looking good but she is still on 25mg of steroids every other day. This is the problem. She looks good and is in very good spirits. The kids LOVE coming to Williamsburg and playing with their cousins. My sister has this great bike that rides very low to the ground which allows Karina to ride it alone. She is having trouble sharing it with everyone else. The weather has been great this weekend and spring is in the air.

Today, Karina and I met my friend Anne for tea and while we were sitting in the corner of the coffee shop, Karina with her mask on, this lady came up to me. She said she observed Karina's condition, was a nurse and would love to pray for Karina if that did not make me uncomfortable. This has happened to me once before here. I of course told her that I was a Christian, believed in prayer and would be happy for her to pray for Karina. She sat down and said a beautiful prayer lifting Karina up to our Heavenly Father and gave me her name and number to call her anytime to add a request for Karina to her prayer group. She had a faith and depth to her prayer that made me feel as if God was sitting on the sofa next to us. I am grateful for these angels on earth that remind me to never give up faith in complete healing of Karina if that is God's will.

On a different note, we are three months away from our move to DE. Dwight is getting very busy with the details of training for his new job as well as flight trianing in the C-5. It is an exciting time for us as we get ready to transition our lives in many ways. Please be in prayer with me as I begin to make decisions for Karina's medical needs, therapy needs and possible school attendance. It all is a bit mind boggling right now but one step at a time. God knows the path and we will follow through prayer and listening.

Thank you for checking on Karina and your faithfulness to prayer for her. Won't it be a joyous day when we see her healed.

Blessings,
Dana

Thursday, March 26, 2009 1:47 PM CDT

Drought! It has been a good drought around here with business. Karina had a few doctor apts last week then spent 5 days with her grandparents while Dwight and I took the boys to Florida for Yankees spring training baseball.

Karina is doing well and somehow being with her grandparents made her sweet spirit sweeter and her smile larger. We are so grateful for her grandparents, their love for Karina, desire to make life fun for her and their willingness to have her for a few days. Thank you mom, dad, omi and bubba!

She is on a lower steroid dose and now back to every other day pulsing. This should prevent the cushnoid's symptoms of puffy face, large tummy, high blood pressure etc........She is managing on the off day to not be itchy and miserable. Praise God because those days are very hard on Karina and seem to prevent her from doing anything but itch. So far, so good.

We made a trip to Walter Reed for an oral surgeon evaluation to pull 8 baby teeth that are not coming out on their own. We are not settled on who and how this will happen but will be in touch with her bone marrow doctor to check on other options.

We have not been to light therapy in a couple of weeks. I am unsure and a bit uneasy about starting this back up. The last time we went I felt her skin did not recover from the treatment as quickly. Maybe now that we are getting to a more stable point, she can tolerate it again.

There are a few irons in the fire for Karina's future care and treatment. None are solid decisions but when we feel like we are at the end of our rope with treatment for GVHD for Karina, God opens another door.

There is a drug being used at John's Hopkins that we may be able to try, a call in to St. Jude Children's Research Hospital in Memphis and a consult recommending that we see a doctor up at Hopkins�s for the dialysis type blood treatment. We are not giving up the fight on this skin situation even though we know it may be a waiting game for the new immune system to get happy in her body.

Please be in prayer as we make decisions and possibly stray from the doctor/hospital that we are so comfortable with. We are loyal as a family and the thought is a bit frightening.

The trip to Florida was special time with the boys and Dwight watching hours of baseball along with batting practice before each game. We spent time with our friends the McCulloughs, walked on the beach, enjoyed Busch Gardens, ate out and made great memories. Ian M. joined the boys for two games as well. I was able to meet up with two special ladies who have encouraged and mentored me as an Air Force spouse over the years and I am grateful for their friendship, advice and laughs. Thank you P and S for a special evening. The trip was perfect for each of us.

I am battling a sinus infection and now have no voice. Dwight is home today and has mentioned more than once how nice and quiet it is in the house. Hum? Karina is on the Wii Fit and just realized that the boys are due home any minute and told Dwight that she is "hogging" it. So funny.

I will update again sooner vs. later. Karina has a long day on Tuesday receiving her monthly infusion of IVIG and pentamadine. I will update after that.

Thank you for checking in over the past two weeks to an un-updated website. This mommy has been busy........if only God would have given us a third arm when we had kids or more hours in the day.

Blessings to you all and our most sincere thank you's for your prayers and love for Karina.

Dana

Wednesday, March 11, 2009 9:19 PM CDT

Karina's apt yesterday went well. Her blood remains perfect and her skin not so perfect. The doctor will have me reduce her steroid dose next Tuesday and we will go back in a week and a half. There is definite improvement in her skin and the doctor feels that we can get her back to 20 mgs of steroids every other day but no lower until there is another mode of trying to heal her skin. This will take several more weeks. He is working on the ECP treatment which is the dialysis type machine that would run Karina's blood through a light sensitive machine trying to deactivate her blood cells that are causing the inflammation in her skin. If I don't sound excited, you can understand why. It is a six month commitment, 3-4 times per week, 4 hours a day and an hour and a half drive each way. I so want her well but all I see is her socially, emotionally, academically and physically healing and this would isolate her and remove her from the life that she so longs for. My heart breaks at the thought but God knows just what she needs. He is paving the way to either have the medical facility say "no" which they could or God to take away her GVHD miraculously which He can do or a medical breakthrough to surface for her.

My faith lies in God our father. He knows the road before we travel it. I am weary after four years but he has sustained me over and over. He knows the needs of Dwight and our boys. He has this in the palm of his hand and I praise Him for that. Most importantly, He knows every cell in Karina's body. Please pray with our family for God's grace and mercy on Karina and our family. We are blessed by your faithfulness over the years to continue lifting Karina up in prayer. Thank you.

Blessings,
Dana

Sunday, March 8, 2009 8:20 PM CDT

Karina had a great weekend at my parents. Of course it was extra fun to have her cousins just a few miles away. She played hard and enjoyed every minute of it. I am so thankful for the quiet time I had here with the boys. Thank you to my mom, dad and Debbie for making Karina's weekend so special.

Karina still has very red skin. I see a bit of improvement on her arms and legs and hope that we can continue healing even if it is slowly. Please pray that we can get her off steroids soon. Her body is taking serious damage from this drug all on account of her skin. If we let her skin go out of control the inflammation will cause joint contractures (permanent stiffness) and we can not let that happen. We are stuck between a rock and a hard spot to say the least. I am praying so hard that God would remove the GVHD in his perfect time and that we can spare her body any further damage. It is heartbreaking to watch and difficult to continue giving her steroids daily. I am asking God for peace along the way and guidance to make correct decisions.

The boys are doing well. Baseball season is around the corner and the warmer weather makes us all anxious to get out and play. Have a great week and thank you for always praying for Karina. Those simple words will never feel like enough.

Blessings,
Dana

Saturday, February 28, 2009 8:06 PM CST

Karina visited the eye doctor for a six month check up and we learned that she is developing cataracts from long term steroid use. They are not at the stage of operable at this point but someday will be as we are no where close to being off steroids. It hit my heart hard as it is a reminder of the damage the steroids are doing to her body....all for the sake of her skin condition. She did not seemed phased by the news and has not complained to us about poor vision except today she thought there was a horse in the back of someone's pick up truck and really it was a heaping load of dark trash bags. We will go back in three months and watch closely.

Yesterday was spent at Children's for our monthly long apt of infusions. She tolerated the treatments well. While we were there we had a visit from a Children's employee who had a special gift for Karina. During her last hospitalization, I was interviewed by a local country radio station about Karina's story. It will be used for a radioathon in March to raise money for the Children's Miracle Network which will fund Children's National Medical Center. They asked me if Karina liked country music and who her favorite artist is. Toby Keith was my answer. The producer from the radio station contacted TK folks and he signed a CD and framed photo for Karina. She was very excited to receive this gift and it is now proudly hung in her room.

This weekend marks the two year period of her neurological virus and the healing that has occurred since. Karina and I celebrated at the Olive Garden (her first time in 2 1/2 years)in a quiet spot in the corner. We could have been eating dog food and she would not have cared but to be sitting in a restaurant, hair on her head, sipping lemonade made her feel healed. We prayed while we were there and thanked God for the miraculous healing of her mind and body and prayed for the next two years to be filled with God's presence in her life. She just smiles and accepts the life that God has chosen for her. Why do I think about what could have been when she doesn't. God has laid the spirit of acceptance on my heart. God has placed an angel in our family and we are thankful for the opportunity to live with her.

Thank you for checking in. Thank you for praying.

blessings,
Dana

Wednesday, February 25, 2009 7:11 AM CST

Yesterday was my friend Heidi's kidney transplant. Her husband was her donor and the surgery was a success. They are both in some pain but recovering well and Heidi's kidney is already functioning! A medical miracle in my eyes. Thank you for also praying for her and her family.

Torin is doing well after placing tubes in his ears yesterday. He has very sensitive hearing now and has a lot of energy. It is apparent that he did not feel well the past few months and after removing the fluid from behind his eardrums he is back to himself. Praise God for a successful and uneventful surgery.

Karina is doing well. She has a lot of energy and is not so content sitting for hours in a chair waiting for activities to do. I love her spunk and interest in other activities. I am encouraging her to think more independently and to be curious about life. She still is battling intense itching at night and we are wondering if it is just from the warm bath water. We have not changed creams and are seeing improvement in her skins redness. We have been doing light therapy once a week and find the process tiring along with her many other therapies. We will visit with her dermatologist today and get his take on her skin after this recent flair.

I don't often write about Dwight to avoid mentioning something too personal or sensitive. Life has been so full for Dwight the past few years continuing to excel in the Air Force (which is not easy to do), coming home and helping with every chore he sees (dishes, laundry, baths etc), making time for test studying with Braydin and squeezing in a bit of relaxing time. He has balanced life so well and I am proud of him. I have often noticed that many of my emotional needs as a wife and mother are non-fixable by humans but by God (the list is too long to type :)) Dwight is willing to fix any that he can to make my life better/complete. I think he feels successful when he can help me through a rough time and he does this faithfully. I am grateful for Dwight, his work ethic, his loyalty to our family, his concern and love for each of us and for leading us down life's path with a lot of laughs.

Karina's next apt is Friday and we are praying that her doctor feels ready to lower her steroids. We need this to happen before Karina's body begins to change........diabetes, high blood pressure and obesity. All serious conditions that we have experienced in the past and ones we want to avoid at all costs.

Thank you for praying for Karina and our family. We feel God's presence in our lives daily.

Dana

Tuesday, February 17, 2009 8:07 PM CST

We had a wonderful weekend. Our long time, dear friends from Dwight's Penn State days came for a visit. It was such a special visit to see them and reminisce. Their son, Logan who is 12 y/o desired to do something for Karina. He had a hotdog/coke stand to raise money to purchase a wig for Karina. He posted a sign and photo of her at his fundraiser then his mom and I selected a wig we thought would work for Karina. It was back stocked for months and we all agreed it was worth waiting for. Logan gave it to Karina this weekend and Karina is ALIVE in a new way. The minute she put it on, her whole demeanor changed. She lit up the room with her smile and attitude and now stands a few inches taller with pride. The experience for our families and Logan was worth every ounce of effort. Thank you Logan!

Karina is doing well. Her skin has had some angry days. Our visit to Children's today was pretty standard. Her doctor was not pleased enough with her skin to reduce steroids but he did say it is improving. The road is so long with this skin issue and we must carry on with our chins up. Her doctor is considering adding another immune suppressive drug with hopes that it can take the place of steroids without causing other side effects. Her neurologist is also involved with the decision since it can have temporary neurological side effect. Nothing is free. Her doctor is also very interested in a "dialysis" type process that would send her blood through a light sensitive machine to deactivate the white cells causing the graph vs. host disease to her skin. It is a very big commitment of time, involves a central line surgically being placed and would keep Karina out of therapy and school for up to 6 months. Location and a pediatric machine are both unsolved logistics at this point. More on that later, but pray that God's will is greater than mine. I don't want to go down that road.

Karina has felt great except for acute stomach pain around 6:30 the past 3 nights. Strange pattern and will probably pass in time. Her spirits are so good and today as we were walking through Children's she said," I feel like running!" Holy smokes! Since her blood infection and hospitalization, her body, voice and mind have been so strong. She truly seems happy and interested in more things, attentive to her surroundings etc........we are so excited. If we could only get her skin better, her body would be free of drugs and her true rehab potential would be evident. In God's time! For now we love today.

Please life my friend Glynda up in prayer. We have had the last three Air Force assignments together and she often signs the guestbook. Her husband is in the Middle East for a year and they live on the island of Guam. Her and her three children were involved in a serious car accident in which they were all okay (car totaled) but one adult and two children were killed. Glynda's three kids are fine but traumatized as one can imagine. Pray for her strength to handle this situation with her husband gone. Thanks.

My friend Heidi is one week away from receiving a kidney transplant from her husband. It will take place in Ohio next Tuesday and I ask for your prayers for her family. Her caringbridge site is under heidi_danhof.

I pray that God is evident in your life daily as we all face struggles, hardships and tragedies all the while learning to trust Him for strength. I read a quote that made me realize that we are living our lives in fast forward taking each day as it comes and God sees our lives in reverse. He knows the plans he has for us (not to harm us and for us to prosper) we just can't always see that far. Faith is vital to share and experience God's love for us.

Blessings,
Dana

*new photos*

Tuesday, February 10, 2009 8:17 PM CST

Our visit at Children's today was quick and easy. Karina's blood counts are all good and healing from the last two weeks of infections. Her skin was not so good. If I could only ask it to behave at the doctor's office just like I ask my kids to..............everything and everyone would be happy. Her skin was red all over like she has just gotten out of a hot shower. Strange because it did not look like that this morning or any day over the weekend. The doctor does believe me, REALLY, that is was better before we saw him. Crazy mom, he might be thinking but this doctor has witnessed her changeable skin with his own eyes.......REALLY. The bottom line, he is leaving her steroid dose where it is for another week and we were hoping for a reduction. I am offering to take photos and email him for proof. Crazy situation but reality so we will carry on and try not to feed our girl too much food.

Karina is in great spirits. Her humor is back, more conversations; thinking of others and not just herself, telling stories etc.............We love to see her feeling well. She is nearly begging to go to her Valentine's Day party at school on Friday. Our friend and occupational therapist, Nancy, is back in town and came today for valentine crafts. Karina has such a good time with her and I enjoy her friendship.

We are in prayer about Karina's skin condition, long term. The entire team of bone marrow doctors are attending a bone marrow transplant conference for the rest of this week and I will be anxious for our apt next week to hear of any ideas they learn about.

Thanks for checking in and praying for Karina's health.

Blessings,
Dana

Saturday, February 7, 2009 8:02 PM CST

Thank you for the many many messages that you sent to Karina. Today has been a great day for Karina. She is battling raw sores on her feet and is not anxious to walk far but her mind and spirits are 100%!

I want to share with you all the power of prayer as we lifted Karina to God for comfort and restored health. Tonight at dinner Dwight and I were asking her what she remembers about the hospital stay and feeling so bad. Dwight asked her if she remembers hurting and feeling so sick. She said, "no, not really." End of sentence. That is God's love and presence being right there in her room comforting her. She acts like nothing ever happened. (She does remember the needle pokes and so do I.) I just can not comprehend the power God has to restore a child's mind of very terrible things and their ability to look ahead. Her only request today was to go to the park. It was a day well into the 50's and the lake at the park was frozen over about 3/4 of it.

Karina's skin loves steroids. So does her stomach. She is eating more already. Tuesday the dose will be reduced and thank goodness for that.............we can say good bye to irrational mood swings too. Her skin is looking beautiful and we pray that it will stay stable while we reduce the steroids over the next 3 weeks.

Karina is working on her Valentine's Day cards for her classmates. It is so fun to do this project each year as the kids think of friendship and kindness this time of year.

Thank you again for the messages to Karina and our family. Your friendships are so touching to us. All through Karina's hospital stay she was covered with 3 fleece blankets that I brought from home. One was a gift to Karina from her Sunday School Class in Altus, OK and given to her at the terminal just before we boarded a private jet to get us to VA germ free. It is a blanket with an embroidered hand print of each child in that class. She truly felt comfort laying under that blanket as we spoke of the kids by name, where they live now, little stories she could recall etc..........Our lives are filled with loving memories and gifts that you all have given Karina over the past 4 years. Tomorrow marks the 4 year anniversary of her diagnosis. Although I don't want to make a cake to celebrate or recall the horrid day I do want to recognize the 4 years of life that God has given Karina.

Have a wonderful Sunday! New photos posted.

Blessings,
Dana

Friday, February 6, 2009 9:04 AM CST

We are home!

Karina was able to walk out of the hospital with her walker after 10 days of laying in bed. I was so proud of her going slowly and steadily down the long hallways. A few passing folks gave her a little cheer of encouragement.

We came through 2 hours of traffic (25 miles)but happily did so to know we were heading home. Karina is on an oral antibiotic, overkill, for ten more days to ensure that the staph in her blood is gone for good. Her potassium level went to a critical level and she is on supplements for the next week. Karina's steroid dose was increased to a daily dose for a week to get the skin under control. Needless to say, I just made a fresh batch of peas and pasta. She is very weak but in good spirits and happy. Her skin is pealing very badly and the bottom of her feet are looking like her hands. Her Aquaphor prescription requested 4 jugs per month to give you an idea how much she is pealing.

This morning she is sitting at the table cutting, gluing and catching up on crafts and projects she received at the hospital but was too sick to do. She has a cross necklace on from a friend in Italy and clip on diamond earrings from her friend Kate. She has not missed a beat with being home again. It makes me smile.

You know you have been in the hospital too long when:
your alarm clock sounds like an IV machine going off
you call your husband doctor
you have nothing else to talk about at the dinner table except medical terms
my potted plant is now 12 inches taller
I have no idea what my kids have learned in the past 10 days
I drove my boys to school thinking they missed the bus and really it had not come yet
when you kids call your Grammie by accident
hospital food actually begins to taste good or I eat Chipotle for breakfast, lunch and dinner

on and on.........life is so full and so good. We have experienced the joy bringing home a child from the hospital alive and well. God is good and has chosen to give Karina health today and for that we are happy.

Blessings and thank you for praying for Karina.

Dana

Tuesday, February 3, 2009 12:17 AM CST

It is back! The fever returned this morning and the doctors are scratching their heads. We are all wondering if her on/off fevers are purely skin/GVHD related. The echocardiogram was clear and her heart is perfect...per the doctor. The blood cultures are all without infection or growth. Hum? The CT scan of the head, neck, chest and abdomen are all clear. Her skin is pealing like a snake but the overall skin tone is more white than I have seen in a long time. The doctor is considering giving her a high dose boost of prednisone for the next week or so to calm down the GVHD and this should make the fever disappear. They do not want to cover the fever if there is a real infection somewhere else in her. She has never followed the text books since her diagnosis so this would not surprise me or the doctors.

She is sleeping and back in the bed, pretty uninterested in food or entertainment. I will head home tonight and Dwight will sleep here tonight. His work is very flexible and my in laws are at our fingertips for anything we need. The boys are doing well and seemed excited for me to come home tonight. They are such sweet boys and understanding of this life we live. They have been living this life since Feb 8 2005.

We are doing fine and patiently waiting for our girl to perk up and feel better. We are all praying together for the same thing...........complete healing. Thank you.

Blessings to you,
Dana

Monday, February 2, 2009 5:44 PM CST

We are still here but doing better. Last night at 3:30 am Karina woke and was ready to get up and start the day. I put her off until 6:30 am then had to figure out a way to steer her away from wanting peas and pasta to eat. If you have read this website for very long, you may remember this simple Italian meal that Karina loves. She often requests it when she is really sick or in this case starting to feel better. My sweet mom made it for her and my dad drove it in to DC this morning for Princess Karina. She was grateful and ate it happily.

Today consisted of more antibiotics, a new IV line, more anti-nausea medication, a echocardiogram (heart) and a lot of itchy skin. Her skin is a mess right now but this is part of the healing process after a GVHD flair. Her skin is less inflamed and not as red, pealing all over in large pieces and is itchy. She finally had to take something to reduce the itching to prevent broken skin which could lead us down this same road again with skin infection. She was up in the chair all day and went to bed early............I guess I will be answering questions at 3:30 am tonight.

She has been in good spirits but needing much assistance with her skin issues. This too shall pass. She has been without a fever since yesterday at 2 pm. We are well on our way to 48 hours without a fever then the get out of jail free card will be issued! We anticipate we will go home sometime on Wed. The issues ahead are how and what kind of antibiotic we will go home on. She does not have a "line" on any kind and is not a good candidate for one so we will either go home with an IV and home health services or an oral antibiotic (not a good option in the doctor�s eyes).

This has been a hard week in the hospital but a good week of meeting new parents and seeing many familiar nurses from the past.

God remains faithful to us providing strength, guidance and comfort. We are on this road for His glory and will choose to praise Him for what we have and not for what we don't. Thank you for your prayers and support.

Blessings,
Dana

Sunday, February 1, 2009 7:53 PM CST

Karina remains in the hospital. She was put on a new antibiotic yesterday and it may be working better. The side effects of the drug are tough and she is on an anti-nausea to combat the effects. This afternoon she finally sat up in bed and was willing to eat a bit of food. She was in good spirits but very tired. Her skin is a mess, if I can be so blunt. It is pealing so severely that it is raw in places. She is covered in Aquaphor and we continually wipe away pealing skin that is bothersome to her. She has not had a fever since 2 pm today but this does not mean that it won't come back as it has many times this week. We met a new doctor today that is not only a hemo/onc doctor but also an infectious disease doctor. He feels strongly that this blood infection is purely caused from her skin. That has been my gut feeling all along.

My parents spent the day with Karina and I today and I was able to get out with Dwight and the boys for a bit to throw the ball in DC today. It was a great day and the weather was beautiful.

Tomorrow Torin will have another look at his ear that has had fluid behind it leading us to ear tubes if we can't get rid of it. I am prayerful that the problem is resolving and we hope for good news tomorrow.

Braydin's smile is so beautiful without braces. The boys are keenly aware of Karina's sickness and have shown compassion and patience. Our parents keep them on schedule and loved. Dwight will try to resume a normal work week tomorrow. He has done such a great job keeping us all intact mentally and physically.

Karina has great fatigue and weak muscles after this infection. I suspect that she will need a few weeks to recover. I have had concerns regarding her neurological status and any possible damage to her very sensitive system. She seems to be okay and we are praising God for protection over her. We will watch closely as she resumes normal activities sometime next week.

Thank you for praying for Karina. She is tough stuff and God has given her resiliency, acceptance and understanding that I can not put into words. She must feel carried by Him daily and my prayer will always be for her to stand on a podium someday and tell others about God's love and deliverance.

Blessings,
Dana

Saturday, January 31, 2009 9:42 AM CST

Karina remains in the hospital with high fevers. The source is unknown and that is the frustrating part for all involved. The infectious disease doctors have gotten involved and they have the head scratching job of trying to figure out the root of her fevers. The first blood culture she got last Monday showed positive for gram positive bacteria. Since then, she has been on two IV antibiotics to kill the bacteria. All blood cultures since then have been negative. The fevers should be gone for that reason but this is obviously also a viral issue. She had a CT scan yesterday looking for internal infections around her heart, lungs and GI tract. Nothing was evident except a few swollen lymph nodes under her arms which is not alarming considering her infection.

She is in the bone marrow unit at Children's which is a place we never wanted to see. God has a plan for Karina and we pray for comfort for her. She is not eating but drinking a lot. She is in bed and feels very poorly. Her GVHD skin is very angry and red. Our hearts hurt for her for the suffering she is enduring.

Dwight has taking some time off work and the Sones and my parents will be helping us for the next few days. I am home catching up with the boys and chores today. We will all be with Karina later today.

Thank you for praying for Karina. We are asking God for resolve and comfort for Karina.

blessings,
Dana

Thursday, January 29, 2009 6:30 PM CST

Well, we were cruising along since yesterday at 9 am with no fever. This evening the fever returned. Stubborn thing it is but we will press on with antibiotics and further samples to see if this is a different infection.

Karina and I were caught off guard today but none the less we will get through it. She does not seem to feel bad and that is good. This means that we will be in the hospital at least until Saturday evening.

The snow and ice have melted and the boys went back to school a few hours late today. Mom and Dad Sones are holding down the fort at home and keeping the boys on schedule. We are grateful for their flexibility and help. My parents may be coming to cover the weekend if Karina does not come home soon.

The boys are doing well and seem used to this old routine of hospitalizations. Thank you for checking in. More info tomorrow.

love,
Dana

Wednesday, January 28, 2009 1:19 PM CST

Karina remains in the hospital. She has had a fever since Sunday evening. Her blood cultures are being watched as they "grow bugs" and will be tested for specific antibiotics which will determine the best method for healing her blood. Karina's blood counts are perfect and right on target, amazingly. Her skin is very angry as this infection is demanding an immune response. Her donors immune system is not happy in her body and therefore is causing her skin to be inflammed and very red. She feels lousy, hot and sweaty and already asking to go home.

Thanks for your prayers and checking in. I will update again when we see the fever resolve and we have a plan to go home. Karina's nurse for the past two days is a lymphoma survivor and carries a compassion and understanding for children suffering. We are blessed to have her.

Dana

Tuesday, January 27, 2009 4:05 PM CST

We were having a wonderful long weekend at Ocean City, MD this weekend until Karina began to feel sick. We cut our trip short, packed up quickly yesterday and came straight to Children's here in DC. The doctor determined that she has some type of infection in her blood, gave her an IV antibiotic and sent us home. We came back today for a second dose of antibiotics and the blood is growing "something". Anything is bad when it is in Karina's blood because she has a little to no fight to beat the infection. We are being admitted to the inpatient side of the hospital for 2-3 days to continue IV antibiotics. Karina was "bummed" in her words as I am too. We have not been inpatient since Sept 2007. Darn. God is good and will carry us through and we are praying for an accurate identification of the bug growing and an antibiotic that will quickly and easily kill it.

I will update again in the next day or so. Thank you for checking in and praying for Karina. We felt out of the woods but seemed to have stumbled in to a bit of a tall trees today. We remain faithful that God is in control of each situation we face. We praise Him today as always and before we leave the forrest he has placed us in today.

Blessings,
Dana

Thursday, January 15, 2009 8:10 PM CST

All is well and busy this month for us. Karina has been feeling well except this past weekend. She began feeling awful on Friday evening, but no fever. Woke up on Saturday morning with a low grade fever that quickly came and went. By Sunday she was feeling back to normal. Hum? One of things we will never know. My gut says she got a bit of a blood infection from a terrible scratch she gave herself last week.

Karina saw her three doctors at The National Institutes of Health on Tuesday. Unfortunately, her skin was not real happy after the fever on Saturday. This revved up her immune system which in turn revved up her graph vs. host disease because they are related. Overall the visits went very well. Her endocrinologist was pleased with her blood results and all levels were normal. The hemo/onc GVHD specialist was pleased to know she has not had chronic infections and therefore feels that she is getting closer to a bit more exposure in public but not until springtime after cold and flu season. The doctor is talking without the mask on over her mouth and nose and we are talking about making Karina wear it until the day she gets married. Will we ever feel comfortable again to let her be exposed to germs? Someday.

Today, Karina was full of spunk, sassiness, humor, fun, life and love. Dwight has been having trouble with his old suburban starting up. Sometimes it does and sometimes it does not. So, tonight in the Pentagon parking lot, he flagged down a car to ask for a jump start. It happened to be a lady and she agreed. A few minutes later, the car was working and Dwight made it home. At the dinner table after Dwight finished the story Karina said, "Daddy, daddy was she a hot momma?" We all died laughing, that good hard stomach laugh that leaves you out of breath. Dwight was shocked at her comment but we all felt a bit healed by her humor. The old Karina is returning!

I have spent time this week researching the options for Karina's health when we move. Many signs are directing us to keep her care right in DC and make the 2 hour drive once a month or so. This would continue continuity of care for her with her bone marrow doctors, neurologist, ophthalmologist and nephrologist. As it gets closer to July we will make more firm decisions but it sure feels good to know the options ahead of time. We have continued light therapy twice a week and seem to be seeing steady progress. Slow is okay when we are going in the right direction.

Thank you for checking in and for your prayers. The guestbook entries are so fun for our family to read. Thank you.

Blessings,
Dana

Wednesday, January 7, 2009 7:59 PM CST

I decided to post an email that I wrote earlier today to a physical therapist at The National Institutes of Health that we met in July 2007 just 4 months after Karina's neurological virus. All is well and God is good.

Mina,

My daughter is Karina Sones. I have attached a photo of her. Here is a quick update for you. Karina was diagnosed with ALL leukemia in Feb 2005 when she was 4 y/o, relapsed in June 2006 while on chemo., had a bone marrow transplant at children's national medical center in Wash. DC Sept 2006. Nov 2006 she developed graph vs. host disease of the skin which was being treated with high dose steroids. In March 2007 (6 months after her transplant) she acutely developed a presumed virus that traveled to her brain leaving permanent cerebellum damage. Within a week of the symptoms, Karina was left unable to walk, sit up independently, eat, talk or care for herself. At the time she also had fungus on her lungs as a result of the suppressed immune system and steroid use.

We came to NIH July 2007 for her to be involved with Dr. Kristen Baird to monitor her GVHD as well as the opportunity to meet Dr. Ed Cowan in the dermatology dept.

During our 2 day schedule of exams to be involved with NIH, we met you. Karina was able to walk a very short distance with help. She was obese and a steroid induced diabetic at the time we met you. You offered us a pediatric strider walker that I almost declined. We had little hope that Karina would be independent enough to use it but you encouraged me to take it with hopes of her recovering some day to use it. We discussed me returning it to you if this never happened or to pass it on to a child that would benefit.

Well, that walker stayed in our garage with the tags on until this past fall. We got it out several times but to no avail. Karina was unable to hold the handles because of the skin GVHD issues on her hands. Open sores made it impossible. Two weeks before Christmas, I woke up one morning and decided that I was going to make this walker work for Karina with pads on the handles to allow her the freedom that a walker gives a child. I got it out, explained to Karina that this was her new walker to give her the freedom to go wherever she wanted whenever she wanted and she no longer had to waif for mommy or daddy to help her walk.

The first day was as if a miracle happened. She has used it independently since that day. It has now been one month of a new life for her. She goes into all of her doctor apts and therapies with it and prefers that I merely walk next to her, but hands off.

Mina, you gave her a new life and a stepping stone to travel to the next level of independence. We pray for her to put that walker to the side one day and walk on her own. It will happen!

Thank you for encouraging me to take that walker home!

Sincerely,

Dana Sones

Friday, January 2, 2009 8:47 PM CST

Happy New Year. Karina is doing fine. Staying well. We saw the nephrologists today and he changed one blood pressure medication. Her pressure is too high even on three meds everyday. We totally enjoyed seeing our friends the Huey's from Oklahoma this weekend. There is something that warms our hearts to be with friends from OK. We celebrated Dad Sones birthday as well which is a real honor. Karina and I are making a quick trip to Williamsburg for the rest of the weekend to see my grandmother. She is pulling out of a very serious infection and will head to nursing home for rehab and wound care before returning to the assisted living home with my grandfather. Dwight and the boys are hunting up a storm before the season ends tomorrow. All great fun and bonding time for a sport that is fading somewhat for younger kids. Karina had her first fall, ever! Right off the Wii Fit onto the carpet escaping injury. Few!

We are grateful for 2008 and the healing that God provided for each person in our family. We are excited for what 2009 brings and pray that you find God's gifts is each aspect of your life. Do you remember wrapping a friends gift in a small box then wrapping it in a bigger box, then a bigger box etc.....until you have wrapped it in 6 or 7 boxes. Watching the person open this huge box and their excitement is so great to think of the gigantic package and a gift only to have yet another smaller box to open. They continue to open the boxes as they get smaller and smaller until they finally arrive at the tiny box which was the gift intended in the first place. It can be disappointing to see a tiny gift in the end or it can be exciting as it is the perfect/small and carefully gift selected for you. God's gifts can be the same. I feel that life can offer many layers of opening boxes to arrive at the gift that God intended. that gift, for me, is peace in my heart, acceptance regarding things God does not want to change, faith that he knows just what I need, hope for the future because God promises that and everlasting love and life when we leave this earth.

I pray that your 2009 is filled with God's presence.

Dana

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