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Friday, December 26, 2008 7:11 PM CST

Merry Christmas and Happy New Year! The last week or so has zipped by without an update for you all. No news is definitely good news. Karina had a wonderful Christmas which was three days long for our family. We spent Christmas Eve with Dwight's parents, Christmas Day here at our house and my parents came for the day today. Lots of gifts and celebrating. We are celebrating Christ's birth and the eternal life that we will have in heaven and forgiveness of our sins. I sure wish the public schools would at least acknowledge the real meaning of Christmas and this wonderful two week break. Not a word was said and that is wrong. I appreciate the education on other religious holidays though.

Karina is doing very well. No illness and no problems. We were very busy leading up to Christmas with lots of gifts to make and deliveries to make. She is tolerating the light therapy very well and only received one treatment this week. Next week she will be back to receiving two treatments per week. She is motoring everywhere with her walker; no distance seems too far for her. We go at her pace and she feels all new freedom in choosing where she wants to walk.

The kids got a Wii for Christmas and they love it. Karina has been using a Wii at the therapy center and I quickly saw what a great tool it would be for her balance and strength. She actually uses the Wii Fit with her walker for balance. It is amazing and the competitive spirit in her is rising to the occasion. We have had more fun and laughs with it. Dwight and I sit back in awe of the physical and mental progress she is making. God is revealing his power of healing in her daily. We never would know this joy in our hearts unless we came from the deepest despair known to parents.

About two weeks ago, Dwight received news of our next assignment. We knew we were to move in the summer of 2009 and that is what God has planned as well. We are moving to Dover, Delaware and will live on Dover Air Force Base. We are thrilled with the location and the job for Dwight. We have prayed about this aspect of our lives for the past 6 months faithfully. We have lots of researching to do to transfer Karina's care but know that God has this laid out before we arrive there. I am researching now and praying for the perfect medical doctors for her.

My grandmother is back in the hospital with an infection and had a minor surgery today. Minor surgery is major for anyone 85 y/o. We have been praying for her and for my grandfather who is so lost without her while she is in the hospital. Please keep her in your prayers.


Have a wonderful holiday season.

Blessings,
Dana

Tuesday, December 16, 2008 8:21 PM CST

Karina had a good apt today at Children's. Her blood counts were great and she managed to use her walker the entire way through the hospital. She walked a long way and went to three floors before we had all we needed to leave. We then headed to light therapy in Fairfax and she had enough energy to press on with the walker. This amazes me as it feels like a dream and a prayer come true. I could not imagine the day of not pushing her in the stroller to doctor apts. She never complained.

We saw our friends, Nancy and Allison. Nancy is Brian's mom. He just finished his first 5 day round of chemo. He is in good spirits as they tackle the spot on his lung with a great doctor on board and aggressive chemo. Thank you for praying for this amazing young man. These ladies have been friends since shortly after Karina's transplant, Sept 2006. We have been through thick and thin together along with Mallory's mom Susan. God placed us all together to encourage and pray for one another........that has not stopped as being a mother of a child with cancer never leaves the fear from the heart.

I took the kids to my parents for the weekend and we had a great time. Not much traffic made the trip extra good.

God continues to make himself evident in our lives. Karina's skin remains in the category of "slowly healing". We have three weeks off because of the holidays then another three weeks off because of the inauguration. Yahoo!


new photos that melted our hearts.


Blessings to you all,
Dana

Wednesday, December 10, 2008 9:32 PM CST

Karina is doing well. She has started light therapy twice a week and so far so good but on a lower intensity Karina is doing well with her school work. She seems more alert and recalling information better each week. Her handwriting is very messy when on unlined paper but yesterday I gave her a tiny note pad to write on and she wrote small and beautiful the way she used to. Her teacher was so impressed. She continues to bead jewelry. She is using her walker to go everywhere. She even went in two stores with me yesterday and never complained of fatigue. Therapy is going well with occasional outbursts, steroid based, which we are working on.

This evening Karina was doing ballet moves and recalling the names and simple dance patterns she learned while in OK. She was so cute today with her tights on and boots doing these moves. I told her tomorrow we can get her ballet bag out and wear the real stuff. That ballet bag has been an emotional sight for me to see. I have never emptied it, washed the clothes or looked in it since we moved here. What a day it will be when she can do ballet again.......we pray.

A quick update on three friends I have mentioned on this site. Erin's premature twin boys are doing great. They are growing, gaining weight and leering how to eat and breathe at the same time. Erin anticipates them both home by Christmas........what a gift that will be. Heidi is continuing dialysis three times a week, maintaining her two part time jobs and doing well. She is on the national transplant list for a kidney and family members are being tested. She is in good spirits. Brian, a freshman in college, osteosarcoma survivor, had some questionable issues come up on recent scans. His doctor feels it necessary to give him 6 more rounds of chemo which will last until aprox. April of 2009. He will take online classes at his university while home for the next semester. Please pray for Brian and his family. Thank you for praying for my friends as well as Karina.

Karina is excited for Christmas. We feel blessed to share another Christmas with her. Thanks for checking in.

Blessings,
Dana

Tuesday, December 2, 2008 9:15 PM CST

Thanksgiving was wonderful. We spent the weekend with my parents, grandparents and sister and her family in Williamsburg. We all have so much to be thankful for and it was a time of reflection on the mighty God we serve. Karina has remained well and is cruising on her walker like a pro. We returned home Sunday and had the crazy idea to get out the Christmas decorations. What were we thinking? They are up and all looks pretty.

Caught off guard! That would be my title to describe today. We went to Children's for an infusion of antibodies and a breathing treatment which has been our once a month schedule for the past 2 years and 3 months. We had a very experienced nurse who we know and enjoy. She skipped a very important pre-medication before beginning the infusion of antibodies which I did not know. Karina quickly developed sharp pain in her stomach to which I promptly got her a coke to no avail. I went to the restroom and by the time I got back she was crying and saying her heart was hurting and beating very fast. I got the nurse and told her to stop the infusion only then to learn about the missed pre-medication. Karina's blood pressure was not measuring on the machine. It had climbed very high. An IV blood pressure medication was ordered "STAT" and given to her to bring the pressure down. It took an hour and a half to come down to a safe range and the IV was started after all medications were taken. The nurse admitted her very serious mistake/carelessness, apologized many times over and thanked me for working with her through the several hour ordeal. We got home at 6:30 pm pretty well pooped out. Karina seems to be back to normal, amazingly. I had carried her walker in while pushing her in the stroller and she decided to walk herself out of the hospital with her walker including a trip to the gift shop for a snack.

God protected Karina today. Our friend Mallory and her mom were with us for the day as they waited for apts. We were so grateful for their presence, calmness and sweet spirits. Thank you Mallory and Susan!

Karina is doing well in therapy and with her school work. We need to buckle down this week and get back into our work habits. Karina's skin is beginning to look better in areas. We will go to light therapy on Thursday and next week begin twice a week treatments.

Thanks for checking in. We are grateful for your continued prayers.

Blessings,
Dana

Sunday, November 23, 2008 9:13 AM CST

Thank you for your prayers for my friend Erin. She safely delivered two healthy baby boys this morning. Collin and Joshua (around 4 lbs each)will stay in the hospital a few weeks to gain weight. Erin is recovering and doing fine.

No news on Karina. She is using her walker independently in the house and we love her new toy. She is feeling the freedom that she has not had in a year and a half. Karina's skin is a touch better.

We are anticipating the Thanksgiving holiday season. Today our church message was on having a Biblical world view. That is to say that we are asked by Christ to be thankful for all things. Well, not all things in this world that we have to face are things I want to be thankful for..........initially. Karina's cancer, remission, relapse, transplant, neurological virus and GVHD are things that Christ is asking me to be thankful for because He sees the bigger picture, the big plan for our lives. Wow. It has taken many stages of God showing me usually through others, carrying me, teaching me, encouraging me and loving me that I can learn to be thankful for Karina's illness. I am so thankful for Karina.........her presence in our family, her smile, her sweet spirit, her voice (that I wish you all could hear. It is soft, sweet with a touch of southern accent), her level of acceptance, lack of anger regarding her illness and her love of Christ. She gets it! She knows that God loves her and has a plan for her life and whatever it is, seems to be just fine with her. I am thankful for each of you who read this site, encourage our family through your guest book comments, phone calls, cards and words. You all help us be thankful for Karina's illness because you share how you have learned more about God's love for us, how the Bible offers us promises that can not be replaced or matched with any other idea.

On and on I go but the bottom line is I am going to be thankful for the rain and sunshine in my life. I wish each of you a wonderful Thanksgiving holiday season. I am thankful for you!

blessings,
Dana

Wednesday, November 19, 2008 12:25 AM CST

I want to add a prayer request this evening, Nov 20. My friend Erin who is pregnant with twin boys headed to the hospital this evening after her water broke. The babies are not due to be delivered for 5 1/2 more weeks. Please pray for the safety of the babies and wisdom for the doctors. Erin signs the guest book often and you may recoginze her name from there. She is a sweet friend who has been a prayer warrior for Karina. I am praying for her this evening.
Keep our precious friend Kathy Gettis in your prayers as she lost her dad suddenly last night after a short illness. A kind man with a heart of gold.........he will fit in perfectly in Heaven but missed terribly here on earth. Thank you.








Karina had a good apt at Children's yesterday. Her blood work remains beautifully normal. Hum, normal hold a new meaning to us now. Her doctor is leaving all her medications alone as to not stir the pot while undergoing light therapy. If we change something now, we will not know what is working or not working. We had another light therapy treatment yesterday as well and she did a great job cooperating. She had some itchy spots after treatment but that is an okay side effect at this point. Today her skin actually looks good, better than yesterday. Loretta, her teacher, also agrees so it is not the optimistic mommy eye fooling me. We remain so hopeful.

I heard yesterday while at Children's that her old doctor and previous chief of bone marrow transplants at Children's, Dr. Kamani, got quite heated in discussing Karina's case at rounds earlier this week. He wanted to know a plan was in place for Karina. His gut feeling is that Karina needs the ECP (extracorporeal photophoresis) to fix the problem but the downfall of this is that it is a 6 month commitment in Chicago and requires a central line. Karina's skin does not have the integrity for a line. Anyway, I loved hearing that he still follows her case and has interest in her, holding others accountable for her care.

The boys are well. We are watching Torin closely as we thought his hearing was altered recently. He had ear infections about a month ago and we will go to the doctor tomorrow to follow up on that issue. Braydin is doing well. Dealing with his first bully/mean child on the school bus. Of all things it is a girl and the comments are deeply rooted back from second grade and observing my relationship with Braydin at class parties etc.... After a long discussion about how he should respond to her as a Christian young man, after taking it and ignoring her for the past 2 weeks, I am anxious and prayerful that it is resolved today. Braydin has the kindest heart and has no intentions of confronting her but something is going to need to be said to her. Hum......again.........if he does not than I will. Being a parent is tough stuff.

We are getting excited for Thanksgiving. We will spend it with my family this year. I am actually getting excited to put away the pumpkins and fall decorations and break out the nutcrackers, garland and tree. The cold snap of weather sure has helped me into the spirit.

I decided the other day that Karina needed to be using her walker especially around the house. I feel so slow to make a change but once I decide then look out. She probably wonders what hit me on the head. We have not been using her small walker for two reasons........her hands have so many sores that she would not hold onto it and I did not want her to have another "thing" to wean eventually. Her independence in the house is so important and the timing was right. She has happily used it and needs just close supervision to use it. One day, will just let her go and not need to be close to her. She loves the idea. She wants it to go faster and have swivel wheels on the front so it scoots around easier. This is a big step for her and we are thrilled.

God continues to guide Karina's healing as well ss mine, mentally and emotionally. Her sweet spirit and voice can be heard all around our house. We are thankful for everyday. As the holidays approach I think of many friends who are not shopping for their precious children who have earned their angel wings and are in heaven. It must be an endless playground with no wants or cares in heaven but a void here on earth. My heart is heavy for them.

Have a wonderful day.

Blessings,
Dana

Wednesday, November 12, 2008 1:39 PM CST

Back to the basics. We had a good visit to a new dermatologist today. I could not help but notice the atmosphere of the office, staff and doctor. Calm, cool and collected was my first thought then the feeling came over me...........old fashioned! This doctor was definitely from the old school of promptness, courtesy and consideration for the patient and their time (rather, their mother’s time). He is brilliant and kind. After my concise, no really, I promise, summary of Karina's GVHD history we agreed on trying the UVB therapy again but in his office where we are certain the machine is correctly calibrated and once a week for the first month. He called and consulted with Karina's dermatologist at the NIH and all agreed. We are hopeful. She had her first treatment today and no problems so far. We will be watching for chills, fever, skin discomfort etc.............I do not anticipate any of these. We will go back again next week......happily as our experience was so good.


My heart has been heavy in asking God for EVERYTHING; to make Karina better, our lives as parents easier and to make our lives the way they used to be. Honestly, I am not able to tell you the time and date any of these things has happened instantly but God has slowly and specifically guided us to a place of acceptance and peace. All along I have thanked God for MANY things all of which I have written about. That was my form of praise but after reading this Psalm........I need to dig deeper in my heart and realize that I do have much much more to praise him for!
I will leave you with a Psalm from my devotions today.

"Praise the LORD, O my soul; all my inmost being, praise his holy name.
Praise the LORD, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies our desires with good things so that your youth is renewed like the eagles.
The LORD works righteousness and justice for all the oppressed.
He made known his ways to Moses, his deeds to the people of Israel: The LORD is compassionate and gracious, slow to anger, abounding in love.
He will not always accuse, nor will he harbor his anger forever; he does not treat us as our sins deserve or repay us according to our iniquities.
For as high as the heavens are above the earth so great is his love for those who fear him; as far as the east is from the west, so far has he removed our transgressions from us.
As a father has compassion on his children, so the LORD has compassion on those who fear him."

Blessings,
Dana

Monday, November 10, 2008 8:14 PM CST

There is no new news here at our house. Karina appeared to be getting a cold over the weekend but seemed to beat it after a day. She had a great therapy session today and worked very hard. We head to the new dermatologist on Wednesday which we pray will offer new options for Karina's skin.

Karina is in good spirits. Her strength seems to be gaining slowly but continuously. Her body temperature seems to be so regulated that she is wearing less sweaters than I am without complaint. This is huge strides from last winter.

Dwight is off tomorrow for Veteran's day and I wish all our veteran friends a great day. These men and women have fought for our freedom for centuries past and the cost that many have paid has not been free. Thank a veteran tomorrow.

New photos of my "hunters".

Blessings,
Dana

Tuesday, November 4, 2008 10:43 AM CST

Karina and the boys had a very fun Halloween. Our weekend was filled with friends and grandparents.........and pounds of candy. My friend weighted her sons candy it was a whopping 13 lbs. We did not think to do the same but I am afraid we are within close range. The kids sat on the floor and lined up their stash of candy, organizing it by priority.........first the chocolate, lolly pops, a give away pile for daddy's office etc.....our front door was closed and the light off but our door bell rang. Braydin answered and promptly told the kids that we were out of candy. I said, "NO we aren't out of candy and if they caught a glimse inside our house they would know we have 13 lbs neatly organized all over the family room floor. Quick, go back and tell him we have some candy for him." Braydin chuckled as he was the last to empty our give away candy at the end of the night....thinking that we had no more. He is the most generous young man and offered a large handful of his own to this boy. It was a funny minute at our house.

Karina is doing good. I have rarely used that word because I look at her wellbeing holistically. There are many aspects of Karina's health and I have to say that she is doing good. Her mood is light, fun, funny, happy (expect for occasional steroid outbursts)and her memory is improving overall. She is telling stories with expression and independent thoughts. We have had two weeks off from Children's (we are at the hospital right now) and I am feeling the medical independence that we used to have. More time away from doctors offices. What a difference it makes in our schedule and moods that is for sure. She is receiving a 3 hour infusion of antibodies, a flu shot and breathing treatment to prevent pneumonia. (I have no spell checker so figure it out if I am way off)

Thank you for praying for my friend, Heidi. She has completed one week of dialysis and receiving confirmation on her transplant hospital this week which will allow a donor to be found. She is doing great. Her spirits are good and God has placed peace in her heart and those around her.

I will post new photos tonight from home. Thank you for checking in and walking with us along this journey that God has layed before us. We walk in faith and know his perfect will is with us.

Blessings,
Dana

Monday, October 27, 2008 8:13 PM CDT

I wanted to write an update on my friend Heidi that I have written about recently. Her poor functioning kidneys have lead to kidney failure this past week. She received a port today and started dialysis. She is in need of a kidney transplant. This has all happened very quickly in the past few weeks. Heidi has been married 19 years to Richard and has two sons in their early teens. In the next few days I will have info regarding transplant donor testing if you ever thought you might be interested. I have asked you to be tested and register to be a bone marrow donor and to donate blood and platelets........but never a kidney. I love the research that I have read regarding kidney donors..........their life expectancy is higher than the average person. Why, one could argue that only very healthy people donate kidneys and one could argue that the joy, satisfaction, hope and love that one feels after donating can lead to a longer and happier life. God has his watchful eye on Heidi and knows the very organ donor for her. May those that Heidi knows be prayerfully considering being tested?

Karina is doing great. She seems to be feeling well despite feeling sick on Saturday. We blamed it on the hotdog at the ballpark but who knows. All is well now. Today was a fun day as her friend Allyson came over to play. Allyson is a ray of sunshine to our household. We all enjoy her being around with her easygoing spirit. They get along so well. I always hope that Allyson has fun when she is here because Karina can't get up and run around like most girls. They did paper dolls, made homemade apple sauce, played games, Karina rode her scooter (with my help) and Allyson did gymnastics for us.

My sister and her daughter Carly came up for the day on Sunday and we had a great time together......we always wish they could stay a few days as the fun never ends.

We have a week off from Children's. The weather got cold here but Karina's body temperature seems to have regulated compared to last winter. We are so glad about this. Her therapy session went well today. Karina seems to have mood swings from the steroids still but is learning to recover on her own or recovering because mommy ignores them. Both good solutions!

The boys finish up baseball this weekend. Dwight will hunt again and we look forward to the kids having a few extra days off school next week for teacher work days. We love them home.

All is well here as we feel God's peace in our lives in this holding pattern with Karina's skin. We are content knowing that her blood is very healthy and the only issue in her life is her skin. Once the skin heals she will get off the steroids and immune suppressive drugs which will allow her to get off of literally every prescription medication she is on. How sweet it will be one day when we cross that bridge. Until then, we have faith that God has us on this road for a very specific reason and we are going to gather our hope, faith, courage and energy to continue to praise him through the storm. Thanks for checking in.

Blessings,
Dana

Wednesday, October 22, 2008 8:09 PM CDT

Karina had great doctors apt. Her blood levels look just like mine and yours. This is great news considering the medications that she is on. Her skin remains red in areas but considered stable so the doctor is holding steady with her steroid dose until she is evaluated for light therapy (PUVA) Nov 12. She seems to be tolerating the dose well. Her weight is a bit high but not increasing so I can't be too worked up about that. She did say yesterday that she wished she was not so hungry so her tummy would go down and her jeans would fit better. A typical girl already learning that the tummy and tight jeans is a lifelong issue.

My last posting was such a downer and I can imagine that you all following Karina's site for a period of time were wondering why I am STILL struggling at times with loss. For some reason God gave me a good memory for the past. I seem to recall every moment of her life before March 07 when the virus damaged her brain. A photo or movement she makes floods my mind with what was. Is some strange way I feel like the past is a blessing and a curse for me? I want to forget about who she was and what she could do because it hurts and maybe I should but at the same time it is what drives me to work with Karina to challenge her to become independent again. I have been praying about my sadness and I feel you all have too because I have felt a leap of acceptance flood my soul and my attitude this week. Dwight and I have talked about the daily choice of rejoicing for each day that God gives Karina life. We have accepted Karina's condition and now I think God can move us in his direction. Thank you for praying not only for Karina this week but for me as well.

The boys are cheering on the Tampa Bay Rays because our friend Ian likes them and lives in Tampa! My boys are loyal to their Yankees and next in line for loyalty is their friend...........big E!

I made yet another trip to the doctor yesterday and received an antibiotic for my sinus infection. Ya hoo!

Karina has been so fun the past few weeks. She must be feeling good as her spirits are so good. She smiles easily, jokes with everyone, has coped with disappointment better (one day there will be a despoiling process that I hope is not physically painful for me or her :)" and initiates conversation. It is wonderful to have her mental presence and not just physical. She is such a sweet girl....

Blessings,
Dana

Sunday, October 19, 2008 8:56 PM CDT

If you were waiting for the new photos............they are now posted. My head cold seems to be about gone after a miserable week and two trips to the same "crazy" medical person who gave me the run around and still no antibiotic for a sinus infection. Can't wait to receive my comment card in the mail. :)

Karina seems to have managed avoiding the many germs the boys and I had this past week. Her skin is pretty red this weekend which may be telling us that she is fighting something but symptom free at this point. We head to Children’s this week for blood work. We don't expect any surprises.

Please remember my friend Heidi in your prayers. Her battle with kidney problems is not over. She is in great spirits and in God's hands.

The boys are still in baseball full swing and doing well. They are planning their NY Yankee carved pumpkin, cheering on the Washington Redskins and hoping that Boston loses tonight.

I am going through the daily joys and struggles of life. I find great joy in simple accomplishments for Karina and struggle with the girl that she will never be again. I read on others mothers websites about the sorrow of losing a child and all the memories that haunt them when they go somewhere or see something that reminds them of their loss. I feel such similar feelings. God had a plan when he brought us to VA for these trials. I don't think I could go back to Oklahoma without much courage. We have promised the kids a trip back to OK City and I know God will prepare my heart before then. I want so much more for Karina but can't find a way for her to desire more for herself. She loves everyone caring for her and so would I but I pray in time she is able to do more independently. I struggle with selfish feeling because I am physically and mentally tired. God continues to carry me through. Last week the kids Bible verse to memorize was: Give all you worries and cares to God for he cares for you. Phil 4:8. It was planted in my heart this week to give these cares to God because he can carry the weight of my sorrows. I continue to lean on Christ for daily strength.

Thanks for checking in. Have a great week.
Blessings,
Dana

Wednesday, October 15, 2008 12:16 AM CDT

Karina is doing well. Her skin remains about the same and her spirits are high. I will take red skin forever if we could see Karina's real personality blossom and continue to see physical improvements. She is tolerating the steroid dose pretty well. We do see increased mood swings on the off day of steroids.............nothing that we have not seen and experienced many times before. This too shall pass, as my mom says.


We had a nice weekend at my parents. I have been fighting a cold and it has finally gotten the best of me. Braydin is home today with a fever so we are both headed to the doctor this afternoon. Torin is feeling better after double ear infections. This is our week for sickness and we are just praying and germ X'ing non stop around here to keep Karina healthy. She is in the clear so far but I will be watching her closely for the next week for signs of sickness.

Thank you for your prayers for my friend Heidi. She came home from the hospital a day later and is doing great. She is in good medical hands.


Thanks for checking in. i will post new photos tonight. Off to the doctor..................

Blessings,
Dana

Friday, October 10, 2008 7:40 PM CDT

First, I want to ask you to pray for my childhood best friend, Heidi. When we were in second grade, both of our families changed churches to a home church closer to our town. Heidi and I were two peas in a pod as we entered second grade Sunday School together. Literally, we went in arm in arm with nervousness and our fears melted away when we met our teachers..... the sweetest people on earth. Mr and Mrs Keagy were as petite as we were and we loved every minute of our time with them. Heidi and I have shared many sleep overs together as kids, Dutches the dog, ski trips, Lebanese food, laughs, weddings together, vacations together and many special phone calls as we have lived in different cities for the past 17 years. My parents consider Heidi's parents their dearest friends........Heidi's mom was in my parents wedding. Needless to say this is a tribute to my special friend who is very sick in the hospital right now. Please lift her up. Heidi is a precious spirit with the sweetest disposition completely unable to raise her voice in anger. She is a constant source of support to me as her character has never waiered over the years. My prayer tonight is that she be healed, comforted and carried through this rough road.

Karina and I are at my parents for the weekend. Dwight and the boys are doing a boys weekend........playing baseball and watching football with nutritional supliments of Subway, pizza, bananas and milk. They will be just fine.

Poor Torin did not feel well yesterday but seemed better today. I took him in to the doctor today as a safety measure and he has double ear infections. Poor sweet boy. He is on a double dose of antibiotics and should feel better in a day or two.

Karina's skin is doing okay. About the same and sometimes a bit better. It seems to change with temperature and the weather. She had a night of throw ups last night and woke dizzy but it all seemed to pass after some coke to drink. Who knows what that was about.

We will be seeing a new dermatologist Nov 12 and we are praying that her skin is healing and more prepared for light therapy. In God's timing...........

Have a wonderful weekend. In Virginia, the weather is amazingly glorious.........in the 70's and even up to 80 on Monday. Thank you for checking in and supporting our family in so many ways.

Blessings,
Dana

Saturday, October 4, 2008 9:12 PM CDT

Karina is doing well this weekend. She seems to be in better spirits which tells us that she is feeling pretty good. The sores and cuts on her hands seem a bit better. We are so grateful for this.

The dermatologist that supervised her light therapy is trying hard to get an out of network referral for Karina to receive PUVA light therapy from a very well known and respected dermatologist in our area. We are praying this works out or another doctor in our area.

My parents came for the day today to watch the boys play baseball. It was a beautiful day and so fun to have them around. In the next few weeks, my grandparents will be entering a nursing home. It is less than a mile from my parent’s house and they will have a room together with a sitting room. The time has come and these changes are hard for everyone. I do think that they will enjoy the socialization and structure of their day.

I have posted new photos. We head to Children's on Tuesday, neurology on Wednesday and dermatology on Wed as well. Busy week coming up.

I am never quite sure how to thank you all for your prayers, friendship through this website and faithfulness to carry hope for Karina's health. My prayer is that you are informed regarding Karina and spiritually encouraged in your own walk of faith. I am continually finding that there are many levels of acceptance about Karina's health and abilities, the dynamics of our life as a family and realization that God remains in control no matter what. God wants our hearts to be fully devoted to him, prayerfully walking through the journey of life. I am feeling peace that only He can provide.........it is real and secure.

Have a wonderful weekend.

Blessings,
Dana

Tuesday, September 30, 2008 8:59 PM CDT

Karina is feeling good. Her skin is slowly healing with less redness but unfortunately her hands are still raw and cracked. We are trying to wear gloves instead of a dozen band aids to see if we can get the skin to heal. The sores are preventing her from using her hands in therapy and prohibiting her from doing some activities.

Dwight and I were in Maine for 5 days last week enjoying this beautiful state and its magical coast line. We relaxed and ate our way from port to port. It was a great time and all possible because of Dwight's parents. They came and took over the house duties, baseball games, homework and laundry and much more. We are so grateful to them for their energy and willingness. Thank you Omi and Bubba!

This week, Karina had a much needed break from Children's. Please continue to pray for her skin condition. She is gaining weight too fast because of the steroids and I just can't watch her go through this all again. We fear diabetes and obesity. The high blood pressure has never gone away from before.

Karina's dermatologist called with great news. This is the doctor that was overseeing her light therapy which we had to discontinue a few weeks ago. This doctor just returned from a conference in France and met a doctor who has had success with a different form of light therapy (PUVA which was the original therapy recommended for Karina) on an every other week dose. Just one dose every other week sounds more tolerable. WE are waiting on a few confirmations and a local doctor's authorization. I will keep you posted.

I will close for now. I will update again soon as well as new photos.

Blessings and thank you for your prayers.

Dana

Friday, September 19, 2008 8:14 PM CDT

Some days I seem to spurt out just the medical/technical news on Karina without taking the energy to let you know spiritually where we are.

Energy is the perfect word because expressing feelings regarding Karina usually brings tears and that wipes me out. We have received many stares lately maybe because we are getting out more.........i.e. baseball games, therapy......I rarely feel bothered by it but rather proud of our warrior princess. We have met and re-met many families on the ball field this season. Strange as it is, we sat in the back of the car doing the same thing for the past year and a half but this season seems different. We feel so much more a part of the community now......only took us two years but we surely have a reason for that.

Last Sunday our "Church Kitchen" was based on the verse Romans 8:28 "And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." It took on a new meaning as the pastor opened his discussion with a laundry list of personal hardships/tragedies he has experiences since becoming a Christian. He thought by becoming a Christian, all of the bad things life has to offer would all disappear. He was wrong. How easy it is to think this way. I remember being asked if I thought God gave Karina cancer. My answer changed in the beginning a few times as I could not sort this out but finally I said the world/poisoned earth gave Karina cancer but God provides us the answers/promises to deal with it. His love is steadfast, never changing and he will work all this out for the good......in his time. Right now we do not see God holding up a big sign that says this is the "good" I have for you but we see glimpses of many good things.

We see God's "good" in this website and pray that it is a source of truth and strength for anyone facing a challenge..........and we know we are not the only ones facing tough times. We see "good" in the joy of seeing Karina recover daily doing new things, making progress we thought was impossible. We see "good" when someone tells us that they are growing in their spiritual walk because of this website. We see "good" in showing our boys that God matters in life........get to know him and you will be glad you did. We see God's good in the blessing that we have received from each of you..........many times over. You would not have had the opportunity to give of yourselves and we never would have known this feeling of receiving.

Karina had a very good week at therapy and school. She seems to be feeling good this week and for that we are thrilled.

Have a wonderful weekend..........fall is in the air.

Blessings,
Dana

Tuesday, September 16, 2008 9:26 PM CDT

It seems getting to this website has been impossible the past few days. I will try to be brief.

The boys each had games on Sat and Sunday, back to back in pretty hot weather. It was a fun weekend but busy. Karina managed to make it through a big part of the games tailgating in the back of the van doing crafts etc.......We sure miss our ballpark friends from last season who would climb in the back with Karina and play.

Our friend Kaleigh is home and doing just fine.

We met with Karina's doctors from NIH this morning. They are both very smart, calm, informative and not rushed. They don't seem to have the patient volume that requires them to hustle people through. They both agreed (with each other) that we need to avoid light therapy at this point. Dr. Cowan (derm dr.) is concerned that the machine may not be accurately calibrated causing excessive exposure and severe side effects. He did not mention trying another machine in the future. Dr. Baird (GVHD specialist) suggested adding another immune suppressive drug to help the skin and allow further reduction of the steroids. Great plan and will happen in the next few weeks. We then went over to Children's, shared this information. These three doctors work very well together and agree on appropriate plans that are best for Karina. Karina's primary doctor still wants to find a way to make light therapy work.

Karina's blood counts were beautiful today. Yesterday, Karina had a very good day in therapy. When we got home she had received her first packet of homework from her teacher. She was THRILLED!

We sat in a lot of traffic today and I am thoroughly exhausted. I will update more soon.

I have prayed for the families dealing with devastating loss from hurricane Ike. I can't imagine the issues they are dealing with right now.

Thanks for checking in. New photos.

Blessings,
Dana

Friday, September 12, 2008 1:20 PM CDT

Just a quick few lines to let you know that Karina's fever is gone and her skin is excessively dry and peeling. It is very red and the dryness is so severe that she is having spots all over her that begin to bleed. We are keeping her skin moist with creams and clean to prevent infection. She is in good spirits but very distracted by the flaky skin and discomfort.

Karina and I were talking this morning after our devotions about God answering our prayers. She, as all children do, pray expecting an answer or action to happen immediately after praying. I was explaining to her that God answers our prayers in His timing. Sometimes it is not what we thought He would say or do but he then gives us the peace in our hearts, the courage to do and the acceptance of what His answer is. Torin said, "I never hear God talking to me." We are working on the idea that the Holy Spirit works on God's behalf to guide our decisions and actions to do what is right. It is great to see the kids learn.


Please pray for our sweet little friend, Kaleigh. She had her tonsils and adenoids out last week and has had serious bleeding problems from the surgery. She was admitted to the hospital this morning and will stay a day or two. She is 5 and in good hands..........God's hands.

Also, the storm Ike is looking very threatening to the Texas coast. I received an email from a friend asking prayer for those trying to evacuate crowded roads and prepare their homes for wind and rain.

I know there are many prayer warriors who check in on Karina and thought you would also pray for these needs.

I am excited about this evening. Dwight is going to have an evening with Karina and I am taking the boys to a baseball game. Can't wait to enjoy them! We have two baseball games tomorrow and two on Sunday for the boys. Hum! I am glad we all like ball games around here.

Have a wonderful weekend. Blessings to you all.

Dana

Thursday, September 11, 2008 9:19 AM CDT

We are home this morning, Dwight included, as his office tried to make more space for the thousands attending the memorial dedication at the Pentagon this morning. We have 9/11 in our hearts today and on our minds. Thank you to the men and women of the armed services for fighting the war to keep our country safe. Freedom is not free and the families who lost loved ones on 9/11 are living with the cost. I pray today for those who have lost loved ones in the war as a result of the attack on the US.





Karina had a good day yesterday. She made a special trip to Target to spend a gift card she received. If we go early it is quiet and few people are around. While there, I ran into a childhood friend which was very fun. We headed to occupational therapy and she worked hard. Her teacher came and we finished off the day with a baseball game. Braydin's team looked great and Karina sat on the bench and cheered him on for an hour. Big accpmplishment. Yesterday was a great day for Karina to get out and try to enjoy herself. I want so hard to allow her more time out of the house being and feeling more normal.

I spent a big part of the day on the computer consulting with different doctors trying to come up with a solution for the light therapy. I have to say that we have received such responsive concern for Karina's skin from doctors. We will go to NIH next Tuesday for her primary dermatologist to see her and make decisions from there. Her GVHD oncologist will also see her.

Today Karina is not well. She has a fever, is shivering and feels lousy. She slept well and just as she was getting out of bed started to feel poorly. I feel so bad for her............day after day of ups and downs, feeling okay then sick, hurting, nauseous..........the stress to Dwight and I watching her suffer is becoming overwhelming. We are not certain where to turn from here to find a better solution for her skin. We want the light therapy to work so badly but right now it has caused her much pain and discomfort.

Please pray that we have knowledge to make the right decisions for her.

Blessings,
Dana

Tuesday, September 9, 2008 1:13 PM CDT

We are at Children's and Karina is receiving a dose of antibodies which happens every 4-6 weeks. We will then wait for respiratory to come for the breathing treatment. Karina's blood counts were fine today. Her doctor made a call to our dermatologist to discuss Karina's severe side effects of the light therapy. She recommended that we stop treatment. Our doctor asked if we could find another machine that can be programmed to a lower intensity as well as shorter duration. I now have some homework to do. We all feel that the therapy is helping but we can not continue to cause potential damage to her skin as well as cause her such misery. I will keep you posted on what we find out.

My friend Lisa has reminded me several times over the past few years that God wants us to be still and listen to him. Not just physically but mentally. I now wear a bracelet that says, "be still and know that I am God". Daily I am challenged with doubt, fatigue, fear and frustration. Daily I pray with thanksgiving that God is there for Karina'severy need.

When we arrived at physical therapy, Karina was already feeling bad from the light therapy. She asked me to pray for her to feel better. I did. We then went into therapy and she asked me again to pray. Her therapist heard her and asked if she could pray for her. Thanks, Julie! Then, Julie offered to pray with Karina before each therapy session to ask for strength and painfree therapy. We are blessed to be surrounded by believers!

Have a super day.

Blessings,
Dana

Monday, September 8, 2008 8:00 PM CDT

Karina had a rough day today. We started off early at light therapy then headed to the therapy center back to back PT and OT. She did not feel well and as the day went along, she felt worse. I am afraid her skin is not tolerating light therapy and I am sensing that we may have to stop. We feel discouraged because this was such a hopeful plan to heal her skin. We will talk to the doctor at Children's tomorrow and see what he thinks. Her symptoms and side effects are too severe continue in our perspective. Please pray for her skin to heal from the light therapy quickly so that she does not suffer another minute.

I received this email from a friend today which I have read before but today it made more sense. Enjoy.


Rick Warren (REMEMBER HE WROTE 'PURPOSE DRIVEN LIFE')



You will enjoy the new insights that Rick Warren has, with his wife now having cancer and him having 'wealth' from the book sales. This is an absolutely incredible short interview with Rick Warren,

'Purpose Driven Life ' author and pastor of Saddleback Church in California

In the interview by Paul Bradshaw with Rick Warren, Rick said:

People ask me, what is the purpose of life? And I respond: In a nutshell, life is preparation for eternity. We were made to last forever, and God wants us to be with Him in Heaven.

One day my heart is going to stop, and that will be the end of my body-- but not the e end of me.

I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity.

We were made by God and for God, and until you figure that out, life isn't going to make sense.

Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one.

The reason for this is that God is more interested in your character than your comfort.

God is more interested in making your life holy than He is in making your life happy.

We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness.

This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer.

I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore.

Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life.

No matter how good things are in your life, there is always something bad that needs to be worked on.

And no matter how bad things are in your life, there is always something good you can thank God for.

You can focus on your purposes, or you can focus on your problems.

If you focus on your problems, you're going into self-centeredness,’ which is my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others.

We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her.

It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people.

You have to learn to deal with both the good and the bad of life.

Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy.

It also brought a lot of notoriety that I had never had to deal with before. I don't think God gives you money or notoriety for your own ego or for you to live a life of ease.

So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72

First, in spite of all the money coming in, we would not change our lifestyle one bit. We made no major purchases.

Second, about midway through last year, I stopped taking a salary from the church.

Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation.

Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free.

We need to ask ourselves: Am I going to live for possessions? Popularity?

Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or am I going to be driven by God's purposes (for my life)?

When I get up in the morning, I sit on the side of my bed and say, God, if I don't get anything else done today, I want to know you more and love you better. God didn't put me on earth just to fulfill a to-do list. He's more interested in what I am than what I do.
That's why we're called human beings, not human doings.

Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSH I P GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD.

Saturday, September 6, 2008 9:21 PM CDT

Karina is doing just fine. Our apt with the dermatologist went well. She decided to reduce Karina's light therapy to once a week to allow her skin cells to repair for a longer period of time reducing the side effects. Karina's skin has been looking very well and just today she is getting red again from the GVHD. We will go on Monday's each week and will watch the pattern closely to see the effectiveness. We would like to get it back up to twice a week at some point.

This evening we went to a women's professional basketball game, the Washington Majestic. It was a low attendance game which was perfect for us to avoid crowds. There were dancers during the breaks and Karina loved watching them.

Tomorrow she will celebrate her birthday with her friends doing mosaic tile crafts at the pottery shop. Should be great fun. Today we worked on a castle cake.......if we can get it there without it falling over we will be doing well.

Thanks for your prayers for Karina. She is in good spirits and the steroid dose seems to be a bit more tolerable. Her weight is leveling off; the mood swings are not quite so out of control and a bit fewer. Please pray that her hands heal. They seem to be the brunt of her soreness. Her hands have had cracks and sore on them for the entire summer. We can't seem to find a solution to heal them. It is a real issue because she does not want to use them.

Karina's homebound studies teacher came on Friday for her first day of school it went well and we were happy to see Loretta again! She has such a friendship with Karina and a spirit of energy and encouragement. We love her presence and ability to teach Karina.

Have a wonderful weekend.

Blessings,
Dana

new photos!

Wednesday, September 3, 2008 7:45 AM CDT

Happy Birthday Karina!

Karina had a good apt yesterday at Children's. Her blood counts were beautiful and her spirit the same. We then headed to light therapy and the day went down hill from there. She is not tolerating the light therapy very well. We will only go two times this week and maybe have to miss our second apt because her side effects are extreme. She continues to feel very itchy, hot, burning skin until she is about crazy. She had tylenol and two benedryl's last night and finally went to sleep. She is still sleeping this morning and that is very unusual.
I am making her birthday cake which of course will be a crown to go along with the princess theme. I pray this morning that her skin is healing and that God will remove the side effects for her to have a great day today.
I spoke with the dermatologist at length yesterday about Karina's tolerance to the light therapy and she said that the machine is on the lowest setting possible and it is likely that she may only tolerate one treatment per week.

Thank you for your prayers along this journey. The road is long but paved with God's love, provisions and faithfulness to walk with us each step of the way.

blessings,
Dana

Saturday, August 30, 2008 10:55 AM CDT

We have had a good week celebrating Dwight's promotion. It was a fun week preparing food, receiving house guests and focusing on something exciting. The day went off without a hitch except for the dumping rain which thoroughly soaked most of us trying to make our trek into the Pentagon. We were so blessed to have Shirley T. and Mark M. in town bringing back lots of fond memories. Thanks to Steve H. our former youth pastor who gave the invocation and others who travelled from out of town. As I sat and listened to Dwight talk and thank those who made a difference in his life. I would have loved hearing each person in the room give their memories of Dwight. It would have been a much funnier day for sure. Dwight's boss Col McDaniel did a super job officiating. We are now enjoying a fun weekend relaxing.

Karina has had an okay week. She is feeling the after effects of the light thereapy which is like sunburn. Her skin gets very red, warm and itchy. We lowered the intensity and duration on Wed and held at that level for Friday's treatment but she still had the bad side effects. Next week we will meet with the doctor, discuss the side effects and only have two treatments because of the holiday weekend. Karina gets the shivers so bad by evening that she is shaking all over. We do not want her to suffer a minute and need to come up with a milder dose.

Next week the boys start school and Karina will start homebound services. She will have school on Wed, Thurs and Fri for 2 hours each afternoon. The best news is that her teacher from last year will be returning to us. Karina will also be going to the rehab outpatient clinic (through the back door and into a private room) for therapies three times a week. We look forward to these changes in our schedule.

I wanted to give you an update on our friend Rob who I have mentioned in the past. He has been across the country searching for more answers in his battle with cancer. His blood tests and bone marrow show a combination of leukemia and non-hodgekins lymphomia. He is not on any chemotherapy and is being told he will be in six months. The doctors are baffled by the blood results and are telling him to wait for treatment. The thought of knowing and waiting is mind boggling. Please pray for Rob as his parents assist in the process of treatment decisions. Rob is in his mid 20's, single and a great Christian guy. He lives in northern Virginia very close to us but is from California where his parents live. Pray for wisdom for him.

karina will turn 8 next wednesday and we are going to have the grandparents over for dinner and she will celebrate with her friends next weekend at a pottery shop! We praise God for giving us another year with Karina. Sept also marks the one year point that she has not been in the hospital! Praise God!
sorry for the typo's............my spell checker did not work.

blessings,
Dana

Wednesday, August 20, 2008 2:15 PM CDT

Karina and I had a nice weekend in Williamsburg minus the excessive traffic on the way down. We were feeling like we were never going to get there but we did. What a reminder from God that he will allow us to get "there" with Karina as we often feel like we will never see her better, strong and healthy. The feeling was so good this weekend when we arrived and will be so good one day when God says that Karina is "there", travelled her journey.

What bugged me along our trip down was a lack of patience for the stillness on the road, unsure of when we would be moving in the right direction, all alone in our car just waiting............We prayed for a safe journey and His hand of protection on us and calmness in our hearts as we waited. Just exactly what we are doing today for Karina and the 3 1/2 year journey we have been on. We sometimes think that we are along but know that we are not by God continual presence in our lives.

Continual presence sounds general so here is a specific. We travelled home on Monday (to avoid yet more weekend traffic) and went straight to the dermatology apt. We saw our nurse and she asked us to come to a room because the doctor wanted to speak with us before we started her light therapy. I thought, oh dear, she has changed her mind, did further research proving that light therapy may not be the answer for Karina etc...........I quietly prayed as I have about this treatment for weeks. the doctor came in and said that she felt a passion for Karina's complex case which challenges her medically as a dermatologist. She felt it best to consult, over the weekend, with her mentor doctor. This doctor is not only her mentor but the president of the American Academy of Dermatology and a text book writer for dermatology academics. He is on staff at the Univ. of Pennsylvania. He suggested an alternative immune suppressive medicine with less or no side effects (i.e.. destruction of red blood cells, abdominal pain, body tremors, a different steroid cream used after a twenty minute soaking bath. Along with light therapy he feels this should do the job!

That is God's continual presence in our lives. Just when we feel alone, waiting in traffic there He is.

Karina remains very red on her skin. We are adjusting our schedules to meet our upcoming school calendar. We are excited about this because our day will run more efficiently and smoothly. I have made some firm decisions lately with Karina that would otherwise get resistance and have felt blessed that they are for the good and working.

the boys are on their way home from Williamsport, PA watching the Little League World Series for the past 4 days. Dwight took a different route home today and also toured Gettysburg which the boys will enjoy. They will sleep well in their own beds tonight I have a feeling. We are excited to hear about their adventures. Thanks to Matt and Daniel Bonavita for making the long trip to enjoy the time with Dwight and the boys.

We are waiting for Karina's doctor to make a decision on the new medicine and the specific dosing for her to receive full benefits for her skin but not an overdose. Thank you for the messages to our family............we find our hearts and faces smiling as we remember special times together and special relationships. Please know that we would cherish the time to call and chat with each of you and I get sad when I realize that my time/life does not permit that right now. One day when Karina is in school and well, I will have a huge long distance bill!

Blessings as you seek to see His continual presence in your lives. keep your eyes and hearts open to Him.

Dana

Saturday, August 16, 2008 2:53 AM CDT

There must be an Army of prayer warriors out there praying for Karina............and me! I thought about disguising the time of this entry but those of you who glance at that know I am not one to write in the middle of the night. But, since I have been up more times than I want to write, I finally got hungry enough to come to the kitchen. The computer is next to the cabinet with the cereal and here I am.

I want to thank you for your prayers, emails and phone calls this past week. Karina had her first light therapy session yesterday and it was a simple and interesting process. She will have this therapy three times a week for at least a six month period. The time and intensity of the treatment will increase slowly over time. The risks are sunburn as she is essentially standing in a tanning bed. Since she is already "pink" on her skin we will have little to no idea is she is getting burned unless the damage has been done and she blisters. We are trying to explain to Karina what a sunburn feels like but are uncertain if she will be able to differentiate this from her very irritated skin. Her first treatment was 17 seconds in the "box". We will go on M, W and F.

Karina's skin remains very red but not as inflamed as a few days ago. There were visible welts on her. We are now dealing with the reduction of those welts and what is left is excessively dry and cracked, peeling skin. Her hands and feet are the most severe. She has open cuts on both which makes walking and using her hands a challenge and very painful. Karina called me around 12am and said, "mommy, what are your doing right now?" with no comprehension, thought or concern that the whole house was sleeping. A few minutes ago, she called and was sitting up in bed and had taken off her pj's and was itching all over and she said, "I think I need a new shirt" so we fixed that then she said, "I need cream on my bottom", "please fix my covers",
"can I have more Benadryl?", "mommy, I love you", "see you in the morning" (really she should have said I will see you in another hour for a little conversation and some more cream.) This is the most pleasant she has been in many days so I pray that we are on the upswing.

We head to my parents for a few days of girl time and she is excited about that. Please pray that her eating gets under control. I need to keep her busier with distractions because she gets bored and then wants to eat. If I say no or lets wait, she erupts demonstrating inhuman strength. Some of you remember my story a few weeks ago about her being so mad she said she was going to throw a bowl at me..............well Dwight almost got it with the TV remote this evening.

I need to view this situation from a bigger perspective, a birds eye view, and not on an hour by hour basis. The physical and mental demands are every few minutes all day long over and over again. That is the fatigue I need to be praying about more often. God sees this whole situation from today until the end of this journey. I know he has a plan for Karina and our family and I rely on Him fully in my faith for the big picture. I do have to remember he cares about the many little things that are daily struggles for me. Today my devotion was about promises being only as good as the person who makes it. This is a word that we have consciously not used with our children.....I promise to do this or that. God's promises are the only ones that can hold their weight, never wavering, never false, reliable and trustworthy. Directed right at me today were the verses I needed: "Do you not Know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the week. "(Isaiah 40:28-29) I am thankful for concrete promises from God to stand on in a world that feels like quicksand.

Blessings,

Dana

Thursday, August 14, 2008 8:51 PM CDT

Karina woke today as red as a cherry tomato but without a fever...............that was only until I left with Braydin for the orthodontist office. Omi called and Karina had yet another fever, 101.5. By the time I arrived home it was coming down and was gone by mid day. The doctor said that we did not need to go in but to call back if she was acting very sick or her fever went high again like yesterday. She was pleasant and seemed fine so we pressed on with our day.

The past few days have been a bit tough because of the severity of Karina's skin so quickly declining, the fevers which are never a good thing, the time away from the boys and just living with a 7 year old maxed on steroids. The steroid devil has moved in! I have struggled to be calm, gently; quiet and loving while being verbally abused in public and private by my pretty pink princess. That is until I read my friends website this evening and cried the whole way through. You all have heard me mention our friend Mitch who went to heaven nearly a year ago. His mom and dad continue to write their blog sharing the personal emotions of an indescribable loss as well as their spiritual journey. (Tracy, please send me your email......I have searched high and low ddsones@cox.net) How low I felt after my selfish thoughts that I am tired, weary and losing patience with this whole medical mess we live with. I have prayed for forgiveness and a renewed spirit to be thankful for the child we have. I know I am not capable of cheering up my tired heart and spirit on my own but do know that God is walking along side me providing the maturity and wisdom I need to press on.

Wednesday, August 13, 2008 3:13 PM CDT

Karina woke today with a fever of 103.1. We went to Children's for more antibiotics given through an IV. She tolerated it well and seems to be feeling a bit better. Her skin remains very red and sore. Please pray for her to stay fever free and that the light therapy will be a great cure for her skin condition.

Thank you for checking in. The boys had a great day with their Bubba at a Potomac Nationals game. Thanks, Bubba!

blessings,
Dana

Tuesday, August 12, 2008 9:44 PM CDT

We arrived today at Children's for an anticipated long day. We did not expect arriving with a fever. I felt certain that Karina had a fever from her GVHD flair but that may not be the case. her white blood counts were very high which means she is fighting off something. She had chills and felt lousy all day. We did proceed with the plan for the day and added an IV dose of broad spectrum antibiotics. She tolerated it all without complaining but she must feel awful.

We arrived home around 5:30 pm and Dwight's mom had made dinner for us, took the boys swimming and creeking and did my laundry. They arrived home happy and tired. We are so blessed to have both of our parents so willing and able to help us and truly spoil us with their love and kindness.

Karina went to bed shivering but without a fever. We pray that she sleeps better tonight and feels better in the morning. Her doctor wants to keep the steroids at 25 mg daily until her skin gets back under control. He also wants to add back the immune suppressive drug that we just took her off of but at a half dose and watch her blood counts very closely for a decline. If that happens he will reduce the dose even further.

The clinic was packed today and very busy. I often look around and tell myself, it should not be this way. All these kids should not be battling cancer and blood disorders. We did see three special friends today that we only get to see on occasion. Each child battling different cancers and at different stages, each needing special prayer. Please lift up Brodie who is cured of his cancer but waiting for MRI results to confirm no new cancer tumors, Keegan whose brain tumor has returned, chemo is not working, developed a severe seizure disorder, is losing is physical abilities and is at risk for being taken off a clinical trial that is his last hope at life. And for Taylor who is winning her battle with a deadly cancer. As I humbly talked with each mom throughout the day, we all share the same struggles, fears, hopes for our children, fatigue and desire for a normal life again. Thank you for lifting these children and their families up to our heavenly father. May they feel his peace on their lives that can provide a comfort like no other.

Blessings,
Dana

Monday, August 11, 2008 8:18 PM CDT

We were able to spend the past four days with my parents in Williamsburg. We were on vacation but Karina's GVHD was not. Friday and Saturday her skin was severely flared red, inflamed, warm to touch and miserable at times. Karina had an extra dose of steroids which seemed to get it under control. We head to Children's tomorrow and I called today to pass a message to her doctor to be prepared for a pretty ripe tomato! Amazingly, Karina seems to feel fine now other than her pealing and sometimes itching skin. That is Karina for you!

Over the past year and a half, when Karina became acutely sick, unable to walk, talk or eat, I have had waves of emotions. Shock at the reality of our child's new "normal", grief for what she has lost physically, mentally and socially, self pity, intense sadness for each member of our family as we have all been affected. This past week was my time of sadness but through God's word, the Holy Spirit's presence and prayer God has lifted me out of my weakness and made me strong in Him.

We have been asking Karina to try her bike again but with the training wheels back on. Karina learned to ride her two wheel PINK Barbie bike at four years old, before her older brother did. She and I had been on a bike ride together in Oklahoma delivering something and we stopped to talk to a friend, Sara. Sara was Dwight's boss’s wife at the time, and Karina interrupted the conversation and said that she wanted her training wheels off. So we peddled home, Dwight took off the training wheels and off she went. To go back to training wheels was hard for her to do but tonight she did it. We explained that it would help her balance and one day we can take them off again.

I tell you this story to open the door into our world of Karina's divine healing. I can easily say how much Karina has lost but we would never know the joy we felt tonight seeing her on her bike again. There is hope in our hearts for her that was previously assumed. Sure, all kids learn to ride their bike, but who has to relearn it. God has his hand on her body and we see this. We pray for Him to remove her GVHD if that is his plan. If not, we will march on through light therapy and beyond telling others of our faith and of the mighty God we serve.

Tomorrow we will have an antibody infusion (3 hours) and a breathing treatment to prevent pneumonia, blood work and doctor exam. Other than Karina's skin, she is in good health. She needs to get off steroids ASAP and this is our major concern. Please pray that the light therapy is successful.

Thank you for your faithfulness to pray for Karina.

Blessings,
Dana

Monday, August 4, 2008 8:47 PM CDT

We had a nice weekend and Karina enjoyed swimming in our friends pool. She may have paid the price as her skin is not looking pretty. As much sun block as we applied wearing a swim shirt, she still is very red. Her skin is not happy and we head to Children's tomorrow for the grim reality. We pray that they do not up her steroids but allow us to stay were we are. The massive hunger is subsiding slightly, the belly is at least 6 pounds heavier and her spirits are generally good. She has seemed tired the past two days but hopefully with a few good nights sleeps she will get back to that energetic girl we came home to last week.

Our trip to NIH last week was good. The blood results came back and everything seems to be positive. Her growth hormone level in her blood was normal...............wow, good news is hard to take. :) The X-Ray of her hand showed her growth plates to be at 6 years and 10 months old. She is actually 7 year and 10 months old. This is good because it will allow her to grow for an extra year as she reaches her late teens. We do not want her growth to be older than she really is.

Today we headed to Walter Reed. We sure don't miss the drive there, the difficult parking or the enormous building but we do miss the "can do" attitude of the doctors. Things happen at this building and the doctors are very helpful. We went for a referal for dermatology to begin light therapy. The doctor said that we can get this treatment at Ft. Belvoir which is 15 minutes drive for us, no interstates involved. We will go three times per week so convenience is vital. We will find out tomorrow when we can begin treatment.

While we wait for that phone call, we head into Children's for a routine check and blood work. My parents will be up for the day to watch the boys. They always love that special time all to themselves with Grammie and Grandpa. Depending on the light theapy, we hope to head to my parents house later in the week.

Life has been full of doctor visits but when I have a moment, I seem to be day dreaming back to our vacation in CA and the amazing memories we brought home. God was so good to provide this opportunity and we are forever grateful to Dan and Mary for getting us off our duffs!

The boys are excited for baseball season to begin. I feel like it just ended and am hoping for dinners earlier than 8:15 pm. The boys found some new friends in the neighborhood this weekend and are excited about this. They got spoiled living on an Air Force Base and having lots of friends instantly. Summer has been nothing but fun and relaxing for both of them. Karina decided that if they don't have to do school work, than neither does she. I guess I am out of reasons to make her. School will start soon enough. She is cancer free, happy, not in pain and beginning to look and sound more like her old self. We are thankful that God has chosen to bless us with her life daily. Please pray for her skin condition. It appears seriously flaired and we need it to be as good as it can be to begin light therapy and have maximum benefits.

blessings,
Dana

Tuesday, July 29, 2008 9:27 PM CDT

Dwight and I are home from an absolutely perfect vacation to California for 8 days. We missed the kids by day 6 but manages to press on with the fun. I could write details for the next hour but know that it was a time of rest, relationship, friendship, sight seeing, dreaming/planning, spiritual renewal, eating and enjoying each other. Bliss!

Karina had a visit to the doctor last Wed as I wrote about. She is up on her steroids dose and it is showing, badly. She has gained 5 pounds in 6 days and talks about food all the time. The crazy personality is back. She has been very sweet to all of us as long as we feed her whatever she wants.

We spent the day at NIH. We got more information on her endocrine system future, confirmation on her GVHD situation, blood work, a hand X Ray for growth plate estimations and some general nutrition confirmation on the current vitamins she is taking. All went well.

I left my purse in the bathroom in the X-ray dept for over an hour by mistake. It had a large amount of cash in it from vacation as well as my GPS. When I went back for it, someone honest had turned it into the front desk, totally untouched. Someone so easily could have removed everything they wanted in the privacy of the bathroom and taken off. I felt so grateful, protected and blessed. Thank you God for sparing me the agony of a stolen purse.

Thank you for checking in. I pray that you are feeling God's presence in your life today.

Blessings,
Dana

Thursday, July 24, 2008 11:20 AM CDT

Dwight and I are completely enjoying our vacation in San Francisco. Today we are headed into the mountains for a couples retreat weekend at a beautiful lake. We will be with our friends Dan and Mary for the next 4 days and can't wait to see what is in store. Last night we had dinner with dear friends......thanks Scott, Wendy, Dave and Laura!

Dwight's mom and dad have kept the house and three kids busy and happy. Yesterday, Karina and Omi headed into Children's for a blood check but more importantly for an exam of her skin. Tuesday, Karina's skin became very red and rashy evening showing a few blisters on her feet. This is all GVHD related and most likely caused by the virus that she had on Saturday night. Dr. Perez decided that she was in a GVHD flair and needed a bump of steroids to calm down the symptoms before they go too out of control.

The doctor upped the steroids to 25mg daily for a week with a quick taper over the following 2 weeks to bring her back close to where she has been on her 10 mg dose every other day.

This is a necessary step but not a welcome one because of the devistating side effects of long term steroid use. Karina's appetite and mood swings are beginning and we will have to check her blood glucose level daily during this period of increased steroids.

Please be in prayer that her symptoms decrease soon and that her body is not greatly affected by the increased medication.

The kids are enjoying the next 4 days with my parents and are thrilled about seeing their new dog and my sisters kids.

As you can see, life is good. God continues to provide in many ways for our family, for Dwight and I to have a vacation together, safety and good healthy. Thank you for praying for Karina.

Blessings,
Dana

no spell checker, sorry!

Friday, July 18, 2008 6:40 PM CDT

We headed into Children's today for a blood check and talk with Dr. Perez regarding a few more bone marrow test results. Karina's blood counts were fine with her hemoglobin was down a bit but not dangerous. All other levels were good.

Dr. Perez said that the rest of the bone marrow tests were free of cancer cells and healthy looking, normal marrow. Great news.

Here is the situation. With Karina off her primary immune suppressive drug we are watching her skin condition very carefully. Please be in prayer that her skin remains unchanged while her body is freeing itself of this powerful drug. The drug was initially added to her "drug diet" specifically for her GVHD situation. currently the only protection she has from her GVHD going crazy out of control is steroids. If we find that her skin flairs, we will have to up the steroids to cover her symptoms.

I have been in close contact with the doctors at NIH regarding the light therapy, PUVA. Things are progressing as we are considering location vs.. logistics which matters greatly in the DC area. Our apt for that is Aug 4th and then we will know more.

Dwight and I are headed to California for 8 days of vacation. This trip will be filled with memories of past vacations there, rest, conversation, friendship, quietness, and dreams for our future. My in laws and parents will divide the time here with the kids. The kids are all very excited! Imagine that, good ridden mom and dad. Why not when grandma serves ice cream after breakfast and grandpa goes fishing at 8 am. Please pray that Karina's blood counts hold steady and that no grandma's will have to bring her to Children's while we are gone. Dr. Perez thinks that she will be low (blood counts) but safe until we arrive home.

I will be in touch again.

Thank you for praying for Karina. I feel that we are headed to a healthy girl.

Blessings,
Dana

Tuesday, July 15, 2008 9:11 PM CDT

Karina's doctor called this evening and he was pleased with the bone marrow aspiration results. He saw healthy cells, free of leukemia, and all pointing to the need to remove the major immune suppressive drug that Karina has been on for a long time. He feels that this drug is destroying otherwise healthy red blood cells in her blood. By removing it, her red blood cells should be able to live their full life (120 days, I believe) and do their job. The bone marrow biopsy results we will learn about on Friday but the doctor expects 100onor cells and no surprises. Their are a few other tests pending like flow cytometry that we will hear about in 2 weeks.

We will be increasing Karina's steroid dose by 5 mg on her every other day dose to protect her GVHD from flaring. The immune suppressive drug we are removing was originally added to her mix strictly for controlling the GVHD. We ask your prayers that her skin stays healthy without this drug and until we can start PUVA light therapy for her skin.

We will go to Walter Reed on Aug 4 to ask for the approval of the light therapy program and a referral to a local dermatologist. This will all take a few weeks so we ask the God protect her skin. We are excited to see is she feels better overall when off this drug. We do know that her immune system should start to improve slowly.

God is good. I am tired this evening after a very early morning and a restless night's sleep last night. We give him the glory for the answers he provided, science/technology, safety, comfort for Karina and her precious life. God has provided this plan for Karina's life and we praise him for it.


new photos
Blessings,
Dana

Tuesday, July 15, 2008 12:17 AM CDT

Karina's hemoglobin was 9.6 yesterday which was good. It was a bit of a false sense of security since it was from a transfusion. We are happy that it did not drop through the weekend.

We just arrived home today from Karina's bone marrow aspiration and biopsy. We anxiously wait for the doctor to call this afternoon to tell us the preliminary results of the aspiration. I will update again this evening. The procedure was the most organized, smoothest, least wait time, most professional, quickest wake up from Karina. The technical portion was perfect.

Karina has a bit of a sore hip from the procedure but no complaints and a Tylenol eased the ache.

Thank you for checking in and praying in preparation for the results. We ask God for his plan, our understanding and acceptance of what He has in store. We give God the glory ahead of time.

Blessings,
Dana

Friday, July 11, 2008 9:13 PM CDT

Karina received a full blood transfusion today and was very tired afterward. We started our day at the dentist for sealants and Dwight asked me how she did. I told him it was a walk in the park, she never made a peep and I read a magazine. If only life was that simple for her.

I have a bundle of details that I could write this evening but I will summarize as my eyelids are getting heavy and my pillow is waiting for my head to hit it.

Karina's doctor is working on a detailed graph/road map of her blood levels/medication doses/bone marrow production to see if he can find a trend or pattern to explain the low hemoglobin. He has not come up with an answer but did receive an email from the lab stating they saw some cells on a slide that could provide him more info. The bone marrow test next week will be the MOST helpful information so we will wait for that. They will aspirate the marrow as well as do a biopsy of the bone.

Karina received "O" type blood today instead of B+ which is her blood type. "O" blood is considered the universal donor which carries no A or B typing. The doctor feels that this is a safer transfusion until we know more details. He is not concerned or considering relapse of cancer cells. We continue to ask this tough question.

After a series of mistakes over the past few months, lost information, misplaced blood samples etc.................Dwight and I were feeling less than pleased with the attention to detail in Karina's care. Rather than list the negatives (which the doctor already knows) I emotionally shared our expectations/needs/desires/level of care with the doctor today. He was very receptive and understanding of my tears which were fueled by hope/passion/fatigue/type A personality/defense of Karina's suffering and love for my child. We are back on the right path now and I learned that even though it is a doctor (which I highly respect), it is important to say what we need in plain English, respectfully. I asked him to be proactive about Karina's future, have a plan and goal as to where he wants her to be 6 months down the road, to exhaust his knowledge and resources regarding her diverse health problems and maintain a holistic approach to her care. He is a great man and doctor who cares about Karina and we maintain confidence in him.

Good night for now. Thank you for the many prayers lifted up for Karina. She is made of courage, covered in God's grace and a firm pillar of faith and I don't think she knows it, she is just living it! Praise God for her health today and the generous blood that was donated by someone. There is my plug for donating blood and platelets. Thank you.

Blessings,
Dana

Thursday, July 10, 2008 8:20 PM CDT

Here is an update on Karina. Despite two mini blood transfusions this week, her hemoglobin rose to 6.8. Tomorrow we will go to Children's for more blood, Monday for more blood and Tuesday for the bone marrow biopsy.


She seems to be feeling well despite the obvious fatigue she must have. Her tolerance for low hemoglobin astounds the medical professionals that care for Karina. I pray that tomorrow is a boost that will bring her out of the danger zone.

We have had some frustrations with the lack of follow up on Karina's care the past few months. Please pray that we gently yet firmly express what is lacking in the care of Karina's past and future needs. Our feelings are not just feelings but valid.

In the morning Karina will get sealants on her teeth to prevent cavities. In the next few weeks she will have an eye exam (she is at risk for cataracts after the total body radiation) and a dermatologist visit at Walter Reed. We will then request the light therapy NIH is suggesting etc...........The light therapy is called PUVA and below is a brief description from an online source. The P stands for Psoralens and the UVA is the ultraviolet A rays. I will keep you posted as we get closer to treatment.


PUVA or photo chemotherapy is a type of ultraviolet radiation treatment (phototherapy) used for severe skin diseases.

PUVA is a combination treatment which consists of Psoralens (P) and then exposing the skin to UVA (long wave ultraviolet radiation). It has been available in its present form since 1976.

Psoralens are compounds found in many plants which make the skin temporarily sensitive to UVA.

This is a stand up tanning bed and she may come out with a beautiful sun tan. We are in prayer for this to be an effective treatment for Karina to allow her to get off steroids.


Thank you for praying and checking in. Last night Karina's devotion was from Lamentations 3:21-24 which says," Yet I still date to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself,"The Lord is my inheritance; therefore, I will hope in him!"

Karina asks no questions, NEVER asks why we have to go to the doctor so much, why her?...........But her mommy does. God presents these verses to us just when we need them and even though Karina does not appear to need them it prepares my heart for our time talking after we hear God's word.

Thank you for praying.

Blessings,
Dana

Tuesday, July 8, 2008 8:36 PM CDT

Just another update after yesterdays post and our visit to children's today. Karina received the other half of her blood transfusion. She tolerated it well but was very tired all day after being wakened early and getting a dose of benedryl mid day to prevent allergic reaction. She was itchy a bit today which is not unusual. Last night she looked like a peach, today she is back to a tomato! Beautiful all over.

The doctor and I along with Dwight via speaker phone discussed many aspects of Karina's care and upcoming bone marrow biopsy. Next Monday we will go back in for more blood to ensure her levels are high enough for the biopsy next Tuesday since she will need to be fully sedated.

The doctor is still baffled by her body's response and lack of ability to maintain normal hemoglobin. We are all in agreement that it is a combination of two things. The biopsy will tell more next week. The doctor is considering removing two drugs, one at a time, to see if the culprit is drug related. Also, we all think that it is also a GVHD problem. More to come on the real reason as we gather info. The doctor is going to make a grid and track her past several months of steroid dose, hemoglobin levels and production % of red cells etc................This will tell more info. The good news is that he does not feel it is a spleen or liver issue at this point. After the biopsy, he may order an ultrasound to rule it out. Easy procedure and one we would welcome for comfort in our minds.

Karina seems to be doing well over all. We just really need to get rid of steroids badly. I am going to tell you a story that made me laugh so hard tonight, not to embarrass Karina but for her to look back and laugh at some day too........long after the steroids have left her body. For those of you who do not know or have never taken steroids they can severely alter sleep patterns, cause weight gain or loss, mood swings, irrational thinking etc....This evening Karina had many picky needs requiring me to fix this or that etc.....I finally said that she needed to be content for a few minutes so I could fix dinner. She did not like that and decided to fuss and cry. While doing this she decided to blow her nose without a tissue (which she does for her therapist when she is mad at them. Totally gross and major impolite). I took one look at her and made the comment that she looked like a walrus which sent her into orbit. She said that she was going to break my bowl by throwing it on the floor. She held it over her head and all I could do was laugh. The boys then entered the kitchen and decided to run for cover in the dining room laughing hysterically. I am still chuckling as I type. Karina's personality is so buried under a year and a half of non-stop steroids but the feisty and fiery girl is coming back as well. We love it all!! Trust me when I say we love the spats and bickering between her and her brothers as we lost "Karina" for about a year of her life after the virus invaded her brain. Praise God for delivering her this far.

Tomorrow our precious babysitter Renee returns for a few weeks. We are so excited to see her.

I have posted new photos.

Thank you for checking in and praying. We are feeling this bump in the road with Karina and the familiar feelings of long days at Children's, uncertainty about her health, concerns, fears, fatigue mentally and physically. How much more can we ask for of each of you as you faithfully pray? Thank you for your steadfastness and faith. God has wrapped our hearts and minds in his loving care and we feel peace through Him.

Blessings,
Dana

Monday, July 7, 2008 6:44 PM CDT

Karina has not been feeling the greatest this weekend and her symptoms were in line with low hemoglobin. Light headedness, nausea and fatigue plus a tongue as white as the clouds. By Sunday afternoon, she asked me to take her to the doctor tomorrow instead of waiting until Tuesday. Smart girl who knows her body.

Sure enough we called this morning and they said to come in around noon. Her hemoglobin level was at 4.0. Normal range is 11-15 and we are happy with 9.0. This is dangerously low. The doctor ordered a large volume of blood but to be divided in half to prevent too much strain on her heart. The first half was given this afternoon and we will go in early tomorrow for the rest of the unit.

Karina will have a bone marrow biopsy probably on Friday if not sooner to see what her production of red cells is doing. We have now gotten to a more serious level of concern. there are two issues: red cell production and red cell destruction. Something is preventing production and something is eating up the cells that are being produced. They will consider her spleen as well.

I will know more later in the week. Please lift Karina up to our heavenly father for his divine healing, answers that have solutions, minimal discomfort for Karina as they doctors explore the options and consider treatment.

All of a sudden her skin condition, steroid dose and immune suppressive medications have taken a back seat. We continue to feel drawn closer to Christ seeking his guidance, comfort and promises.

The nurses and I chuckled at how great Karina's skin looked today, pure as milk and no red cells in sight to make it pink. After the transfusion she looked as pretty as a peach.

Thank you for continuing to pray for Karina. We are grateful for each of you, your support and friendship.

Blessings,
Dana

Friday, July 4, 2008 10:54 PM CDT

The week snuck away! Happy Fourth of July. We praise God today for our countries independence and we thank our soldiers who live their lives to keep our country safe. There are many sacrifices for those who serve in our Armed Forces and today is a great day to pat one on the back and thank them. I will happily give my husband a hug tonight and Dwight's brother a hug on Sunday. Eric just returned in May from a year away from home serving in the War. He left behind four young children and a wife who kept it ALL together while he was gone.

Karina is doing okay. Her red counts are down very low again. We are getting concerned as to why this is happening. On Tuesday we were just there for a blood check. that apt turned into an infusion of antibodies, breathing treatment to prevent pneumonia and blood work. she tolerated it all well but Wed and Thursday she did not feel the greatest. The antibodies can make you feel pretty lousy. Tonight she pulled herself off the sofa feeling rotten to go out front for our neighbors block party and our second annual fire works display. She had a wonderful evening after all and the fireworks took her mind off feeling bad. The kids all had a super time and no major burns..........just a few holes in the socks.

Karina looks great. Her skin is pale and beautiful until she receives blood next Tuesday........then she will be all pink again.

I have been in touch with the doctors at NIH regarding the light therapy for Karina. They have given me great website info to inform Dwight and I of the process. I will share more after Karina's doctor at children's approves it. We are excited about it as an option.


Thank you for keeping up with Karina. We got to visit with a sweet girl in our neighborhood who we have not seen in months. Her mom said she never forgets to pray for Karina before bed. that is amazing to me. We appreciate your prayers and concern for Karina. God continues to show himself to us daily as we give Him the glory for her progress. As I pray each night for her............God, heal her body, cell by cell. You know every inch of her being and have a plan for her here on earth. Help us to recognize it as your will, accept it as your plan and live with hope in your promises."

Blessings,
Dana

Monday, June 30, 2008 12:54 AM CDT

We are home from a weekend in the beautiful countryside in PA. It was a relaxing and peaceful time with the Galpin's and my parents. The Galpin's farm was breathtakingly beautiful and it called out to our family all the things we enjoy. Outdoors, fishing, rocking on the porch, dogs (Magoo and Todo) baby twin goats, quiet evenings, country cooking and family time. We are so thankful for the weekend.

There is nothing new medically with Karina except she walked 3 1/2 feet alone, totally unassisted with her physical therapist this morning. YAHOO could be heard all the way to Oklahoma in my kitchen. We are so proud of Karina and her effort, determination and desire to do more! these were cautious baby steps but done alone!

We hope to hear about a plan for Karina's GVHD issues from the doctors at NIH. I will let you know when we know more. Below is an email from a friend of Karina's that touched our hearts. This is not the first time we have heard words like this from Alexis. Karina special girl friends from Altus continue to reach out to her. We spent Friday morning with Allyson at a new bead shop making jewelry for ourselves. Allyson asked when Karina will be all better. I told her that I don't know but even if she is never like she was before she is cancer free and just perfect in God's eyes. She said, "okay"! Kids are great and Karina's friends are so special to us.

Dana, know that we are praying for you and
> are with you. Alexis turned 8 the day after you were at Children's
> getting blood and she told me that night as I tucked her in that she
> prayed to God to trade all of her birthday presents for Karina's
> healthy body back. I gave her a big hug and kiss and told her that
> God hears our prayers, requests and good deals, but sometimes He has a
> plan that's a little different from ours, and that she shouldn't be
> discouraged or hurt if He doesn't take her up on the deal because
> although I'm convinced He heard her and thought about it, often times
> He has information and knowledge that we don't have and is weighing in
> the big picture.

Blessings for a great week.
Dana

Wednesday, June 25, 2008 9:39 PM CDT

Karina's apt at NIH went well yesterday. The GVHD transplant specialist and the dermatologist both saw Karina and agreed that her skin is still very active. This is disappointing as we think it is not doing too badly. They want to see her with normal skin and Dwight and I have expected this abnormal skin to be just fine. We so want this to all be over for Karina. They are researching a photo/light therapy for Karina that may also include a systemic medication. We are trying to avoid the phoresis machine for a variety of valid reasons to which they understand. We hope to find out more about this and a location that we can begin.

The doctors also agree that Karina needs to stay put on the current steroid dose until we move in the next direction. They are enrolling her in a study that would look closely at her endocrine system. We are also interested in this added information. Karina's endocrine system has seriously been affected from the total body irradiation as well as high dose chemo drugs.

Today we saw the neurologist and she was pleased with Karina's progress in her language skills as well as her increased balance for walking. She thought we both looked great, better than our last visit in March. I did not say, but wanted to tell her that after 5 days at the lake, fresh sun tan (for me), the boys out of school and warm weather that we are out enjoying...........we better look a bit better. We all see progress, slow and steady and that keeps us on our knees praying, keeping our faith in our Heavenly Father for his perfect plan. No MRI scheduled for Karina in the future at this point. Yea!

We have been very busy this week and I am headed to bed. Karina is in good spirits and continues to show us improvements. She wakes up pretty hateful each morning wit lots of fussing, some yelling and a few comments about my mothering abilities. I hope you all are chuckling about now. Steroids have altered her personality and I am callous to it all..................it does wear me down at times. Thanks for the extra prayers.


Blessings to you this evening.
Dana


ps. new photos

Sunday, June 22, 2008 9:08 PM CDT

We just arrived home from 5 days at Lake Anna! The weather was in the 80's and perfect for outside fun. Karina had a great vacation as compared to last year when she was so very sick during our time at the lake. We are so thankful for our friends, Dan and Mary, for sharing their incredible home with us. My in laws, parents, grandparent, sister and her family all joined us for a part of the trip adding great fun and memories to the week.

Karina spent a lot of time outside in the shade on a large swing, under the trees awaiting her next jet ski ride with daddy. Mommy drove a little too fast for her! Dan and Mary came down with their children as well and we spent a lot of time on the boat. Mary totally out-water skied me but we had a lot of laughs and now sore muscles. The boys lived in the water from morning until evening either swimming, boating or fishing off the dock. They had very long faces all the way home. They said if Mr. Dan ever sells his house, could our daddy buy it. Both will never happen but we can enjoy often.

Karina had an amazing accomplishment this week. As I was helping her off the sofa on evening, one hand full of something, she grabbed my empty had and walked side by side next to me all the way across the house. She has never been able to do this. I will never forget where or when this happened just as a parent never forgets their child's first steps. Karina is learning all over again.

Please pray for her skin. We are to reduce her steroid dose again on Tuesday after the doctors at NIH see her. Her hands are not well. Please pray that we can prevent stiffness and that the skin stops cracking. She is afraid to move them too much because the skin cracks and then hurts terribly.

Also, pray that her appetite increases. She continues to loose weight and we don't want to deal with another thing. She got pretty sick this morning as we don't always know why. She is so tough to feed as I continue to stand on my head cooking for her, driving to the local fast food/Chinese or whatever for her. I get tired trying. Is she really related to me? Food is my middle name.

We are having huge storms here this evening and as I sit next to our large kitchen windows watching the lightening, I am feeling a bit uneasy. I will sign off for now.
Big booms and big lightening!

blessings,
Dana

Tuesday, June 17, 2008 10:15 PM CDT

It is very late and I am very tired so here are some "bullets" to keep you informed. That is a Dwight word and a good one at that! Happy Belated Father's Day!

Karina's red cells were up today which the doctor was pleased about. Now they have to stay there.
Her GVHD on her hands is about the same overall. We need to see much improvement soon.
All other blood counts were fine.
The doctor okayed her getting in the pool without water getting on her face or putting her head under the water. Late afternoon and evening is the best time. We are excited about this new venture. (Did not tell him we already did this on Sat at Torin's baseball team pool party. She had a great time and no harm done.)
We are looking into Karina's therapies to be moved to the rehab facility instead of our house. I have to go and see the facility next week, check on the room that they would use for Karina and see how the schedule would be.
I was in touch with NIH and their specialists..........dermatology and Hem/Onc GVHD doctors and they want to see Karina next Tuesday. This serves as second opinion for us.
Ran into Karina's old doctor.....Dr. Kamani. He recommended an eye exam to check for cataracts which would be damage from the full body radiation.
Got to spend time with old friends today..........The Blooms! Thank you!
Said Good Bye to U Bruce and A Laurie as they head back to Germany.
Karina had a fun play date with Allyson yesterday. They had a ball war with against Braydin and Torin behind their forts. Karina was doing amazing things all by herself which was so encouraging to us. She continues to show improvements.

Thank you for praying for Karina and our family. We feel embraced and loved by each of you through your words on the guestbook. Thank you.

Blessings,
Dana

Tuesday, June 10, 2008 3:15 PM CDT

Just as quick as Karina woke this morning, she said that she knew she needed blood. So here we are at Children's getting much needed blood. The girl knows more than we realize! Her beautiful white, milky skin that we so rarely see will now be rosy red in a few hours after receiving this much needed blood. Thank you to the donor who generously gave of their time and blood to provide for Karina. Next time you have the chance to donate, please do.

I just had a lengthy conversation with Karina's bone marrow doctor. He is uncertain and confused by the drop in red blood cells and the marrows lack of ability to produce. He has a variety of blood tests pending and will draw more next week after seeing the results of what was just drawn. He is considering GVHD causes, folate deficiency but not relapse. Praise God as that weak feeling that I feel in my toes was not present as we spoke today. He is strongly considering a bone marrow biopsy in the near future but wants to gather more reason and precise tests as to why and what he will do with the marrow sample.

I am often asked if we are pleased with our care here at Children's. I always say yes. There are continuous frustrations with every medical facility we have ever been associated with Children's included. But the attentiveness to this long term situation from the doctor and support staff is steadfast. They continue to dig for answers, never seem to exhaust from our presence week after week, issue after issue and compassionately want Karina to be better.

Today was a fun day at Children's. DC United professional soccer team was in the building and there were soccer balls all over the place. Karina received an autographed ball and visit from Zack Wells. We actually received tickets for their Sat evening game a few weeks ago. I am excited as my family grew up going to RFK stadium to see the Washington Diplomats. Memories.

Thank you for praying for Karina. God did not have plans for her red cells to go up but we know that He knew that before we even arrived here today. I believe it is Hebrews 11:1 that says, "be still and know that I am God." I am waiting.

blessings,
Dana

Monday, June 9, 2008 10:49 AM CDT

Life has been full of "life" this past week. The boys are finishing up both there last week of school and baseball season. Hence, my 10 pm visit to the grocery store last night looking for figs, dates and pomegranate juice for the ancient civilization food tasting party today for Braydin's class. We have a code red air quality advisory today for the DC area and two baseball functions this evening...........So, we shall see if it is all a go. No time for website writing the past several evenings. Sorry.

Karina is doing fine. Her energy level does not reflect her low hemoglobin level. Yesterday, her Omi and Bubba were here for the day so that the rest of us could attend a Washington National's baseball game with uncle Bruce and aunt Laurie. They reported great energy and a sweet spirit all day not even wanting to watch TV or a movie. Many thank yours to them for keeping Karina all day and creating inside fun and adventures. She loves her time with grandparents without her brothers once in a while. Please be in prayer about her blood check tomorrow. We really need to see that her red cells are producing and her hemoglobin is rising. Not because we don't want her to have a blood transfusion but because we need to know that her bone marrow is producing enough red cells to keep up with the demand.

Karina is having a very tough time with her hands. they are so excessively cracked and dry that she does not want to move them. We are lathering on the creams, butters and "phors" but not finding much relief. Please pray that we can prevent permanent stiffness in her hand joints and that the open cuts heal.


Please pray for extra rest for Dwight and I. We are feeling the fatigue of Karina's health battle the past 3 1/2 years not only mentally but physically. It does not help that we are over 40 either, I guess.


We have received special messages from entire churches this week that are praying for Karina and are feeling the deep gratitude that so often encompasses our hearts. Thank you to the many believes that are praying earnestly for Karina for healing of her body, God's plan and our families obedience to follow that plan. We can write the simple words of thank you but know that our hearts feel so much more. Our hope is to visit the churches that we can with Karina in the next year to personally thank you and for you to witness the miracles that God has chosen to show us here on earth.

Blessings to each of you as you walk with Christ in your heart today. May God's truths be in your words and thoughts to see you through your bright and dark days.

Dana

Tuesday, June 3, 2008 3:23 PM CDT

Karina and I are finishing up another long day at Children's. She has received a transfusion of antibodies, which happens every 6 weeks or so, and the monthly dose of breathing medication to protect her lungs. She is tired but doing fine.

Karina's blood counts were okay today but the hemoglobin was down still. She had a blood transfusion two weeks and it was not enough to hold her up. We will be back in two weeks to check it again or sooner as I suspect. The doctor has a few questions regarding her bone marrow and the lack of support it is offering right now to keep the hemoglobin pumping. The only way to know more is by doing a bone marrow biopsy. I suspect this will be in the next month or so which I do not oppose. She has not had one in over a year and we are in need of more and accurate information. I will keep you posted on this.



I want to follow up on the friend that I asked you to pray for a few weeks ago. He has received a firm diagnosis of cancer but no firm treatment plan. His blood is at such a early stage of signs that there may not be a protocol for him. Please continue to pray for him and his family as there are many questions, concerns as to a diagnosis without treatment and emotional fatigue they are experiencing right now.


She is finished up right now and we are headed into DC traffic. Thank you for the many guest book entries. We love to hear from you all as we feel contected to each of you this way. Blessings to you all.

Dana

Wednesday, May 28, 2008 8:54 PM CDT

Karina and I had a safe but torturous drive home yesterday. Interstate 95 was a remake of the Indianapolis 500 race on Sunday and no I did not act like Danika Patrick. :) Our trip to surprise my mom was wonderful and fun for Karina and I.

Just before we left Williamsburg we found a beautiful Japanese restaurant that was nearly empty and also offered small private rooms with a door. We were able to eat out to celebrate my moms birthday in a quiet, clean place. A real treat for Karina.

As we were headed to our car, a lady and her toddler popped out from the car next to ours. She politely asked what happened to Karina and I told her in my three simple sentences. It was obvious that she was sincerely interested for more than curiosity. She asked if she could pray for Karina and I said "sure" and that we completely believe in prayer and that God has a plan for Karina. She asked if we were "believers" (in God and his ability to heal and perform miracles) and of course we went on to discuss Karina more and where God has brought her the past few years. We stopped in the parking lot and she prayed for Karina a prayer of healing, strength, courage and the miracle of full recovery in Jesus name if that is God will.

Our hearts were moved, our spiritual strength renewed and we gained a prayer partner who is asking and believing that God will heal Karina. Joli, thank you for sharing your faith with us, right on the street! My mom, Karina and I got in the car, began to drive away and really felt speechless as this was like meeting an angel on earth. God is awesome!

A quick medical update on Karina. Please pray that the lower dose of steroids will be sufficient for Karina and hold the GVHD at bay. The next month or two are very critical for Karina. She is at 10 mg of steroids every other day. this is the level we were at back in Feb when her GVHD flared. it has taken us this long to get back down to that dose. If her GVHD flairs again, the doctor wants to begin the "dialysis" type process to work her off the steroids completely. This is a VERY big time commitment with no guarantees. I become "worked up" as Dwight would say to even think about this option. The time spent 3-4 days a week at the hospital, the time away from the boys during precious summer months, the fatigue to Karina etc................I pray that God will spare us this and allow her body to begin making its own steroids and to be weaned slowly and safely.

Please pray that her baby blood (transplant donor) becomes happy in her body. Karina has been in good spirits and improving in every area of her recovery. Her handwriting is slow and neat. She is reading better each week. Her balance, muscle strength and speech are continuing to head toward normal. We are so encouraged. We are praying that God will show us his plan and that he prepares and speaks to our hearts as we follow HIM.

blessings,
Dana

Monday, May 26, 2008 8:26 PM CDT

We have had a wonderful weekend. Karina has been doing well. Her appetite has finally gotten back to a normal state and has gotten me off "malnutrition alert". That feels good as a mom. :)

Yesterday, we made a quick decision to head down to Williamsburg to surprise my mom for her bithday. Dwight and the boys headed to Baltimore to see their beloved Yankees play the Orioles. (Who knows and who cares where Dwight's beloved Red Sox played :))Unfortunately, they lost after a 5 game winning streak. They went early to find their 3rd row seats off third base (happy birthday, Braydin!)and during warm ups a home run was hit and Braydin got the ball with his glove. Memories! Hug your kids tonight, take them to a ball game, have a movie night and eat dinner in front of the TV. We are learning how to live again, live differently and love our different lives.

Since they were headed north, we headed south. We got all the way to my parents house then I called my mom and asked her what she was doing today.....my usual question. She went on to say her schedule and I told great and that I was going to do these things with her because I was in her driveway. We had a great surprise on her. We spent the rest of the day chatting, visiting with my sister and her family. We had birthday cake and gifts tonight. Pure fun.

Karina spent the afternoon with Carly, her cousin 4, beading bracelets and swinging in the hamock on the screened porch. I was amazed how well Karina kept her balance and how much fun she had. Giggles were plentiful.

Happy Memorial Day as we remember the freedom we have because of those who fought and lost their lives doing so.

Blessings,
Dana

Wednesday, May 21, 2008 7:59 PM CDT

Yesterday was a long day but a successful day to get Karina much needed blood. She tolerated it well and was happy to go home instead of the ball field last night. My mom headed home with her and I got to sit with Dwight in the bleachers and actually watch 30 minutes of good baseball.

Karina is in much better spirits today. Her skin does appear a bit redder but now that she is "fully loaded" she is closer to her baseline for normal. She did an excellent job with occupational therapy today and was sleepy for her teacher........again. HUM? She is either really tired or really smart to fall asleep on her to get out of school. :)

Karina was willing to walk today with only one hand to assist her. This is a huge step in confidence for her. We have a long road ahead for independent walking but this is a significant baby step in the right direction and we are thrilled.

We still see moodiness, frequently. I tell Karina that I want to raise her so that I can live with her the rest of my life, not a monster. It is a tough balance when to say no and when to give in. She passionately means her moodiness whatever the "beef" is she has to pick. The steroids are most likely the cause, so for now we will blame it on them.

We did see Mickey and Minnie yesterday. They came all the way from Disney World to brighten the day of kids with cancer and blood disorders. The director actually stopped us in the atrium of the hospital and asked if we were here last year during Livestrong Day and he remembered us. Maybe because I was so emotionally touched by seeing M and M as the memories of our family vacation to Disney World in June of 06 were fresh. In June of 2006 we spent two glorious weeks in FL, got off the plane in OK City only to head straight to Children's because Karina developed a fever in route. Four days later, we got the dreaded news that her cancer had relapsed. The trip and money we spent on this amazing vacation was worth 100 times the effort. Our family holds a special place in our hearts for the magical spirit of Disney World.

New photos!

Blessings to you all. Thank you for praying for Karina and our family. Also, thank you for praying for our friend I mentioned in my last post. Tomorrow he faces more information and tests. Please pray God's peace over him, comfort and compassionate doctors.

Blessings,
Dana

Tuesday, May 20, 2008 4:21 PM CDT

We are sitting at Children's receiving red blood cells today. Yes, an unplanned blood transfusion. The doctor feels that her red cells dropped a few weeks ago because of the virus she had. The body seems to have a delayed reaction and we see the effects of a simple virus much later than expected. Please pray that these red cells just give her bone marrow a boost and that her body is jump started to begin working on its own again.

Karina is in good spirits and will be hard to keep up with once these red cells kick in. She should return to full energy and keep me hopping. Execpt, I don't hop very well anymore. :)

We are preparing to leave Children's and head to Braydin's baseball game in the next 30 minutes. We are excited about that. Thanks to my mom for being here for the past 2 days and for my in laws pinch hitting to get Braydin to his game. Torin just goes along with any plan we have. Just provide a large bag of sunflower seeds and they are all happy. Karina included.

Thank you for checking in and for praying for Karina.

Blessings to each of you as my prayer is that you see God in your own lives the way we have. He is present, real, the Truth and the one constant in the world of uncertainty.

Dana

Saturday, May 17, 2008 9:21 PM CDT

Karina is doing well. She still seems very tired about mid day and pale by evening as we believe her red cells are still low. Her spirits are good. I am writing to give you a quick update feeling extremely tired this evening. Tired all for good reasons, though.

I gratefully celebrated my forty wonderful years of life yesterday. The special friends that I have her in VA surprised me with a lunch date, Karina included. It was a gift alone watching her sitting with the ladies having lunch, of course in a very safe location. I was greeted with love from cards and messages from so many of you recalling memories of our friendships. I feel so undeserving of the attention and compliments so generously spoken and written. Thank you. My morning was spent at the National Zoo in Wash DC with Torin and the kindergarten class. That is a perfect morning for me! We had a wonderful time together and I enjoyed every minute. My in-laws watched Karina and then came back in the evening with a full course Italian meal. Dwight and I went out for dinner this evening and tomorrow Karina and I will drive to Richmond to meet my family half was for another day of celebrating. Holy smokes, I am having a super time this weekend.

The boys played back to back baseball games today and Karina cheered and made it through a long day. She met a new friend today and she sat and played with Karina in our tailgate. She now has a friend from each boys team, siblings, to look forward to visiting with. This is so therapeutic for Karina and the source of her energy today. We are grateful for sweet little girls.

I hopefully found the million dollar miracle natural formula organic oil at the health mart today to heal the sores in Karina's mouth. We don't see much in the way of bad sores from looking but enough that she is very sensitive to foods and the pain.

I want to ask you to pray for a friend of Dwight and my who is undergoing tests for possible cancer. He is in his mid 20's, healthy, a believer in Christ. Please pray that he is properly diagnosed (maybe with something else) and that God will reveal himself daily as he walks the next few scary days.

I recently read a daily devotion from Max Lucado that was a reminder to me of the critical nature of faith in God. Faith typically does not instantly disappear from our hearts but often drifts slowly away like an unanchored boat at sea. It can creep into our lives daily a bit at a time and before long we have lost faith in our creator and planner of our lives. I don't want to spend a day drifting but living in complete faith that God's word supplies all the truths that we need to anchor our faith. I want to live by faith and I hope you do too! God is my refuge and my strength, in Him I find my comfort.

Blessings,
Dana

Wednesday, May 14, 2008 9:09 PM CDT

Our week has been humming along with lots of rain and a beautiful day of sunshine yesterday. Karina is okay but not feeling the greatest. She has had some stomach pain and tired as expected with her hemoglobin so very low. We are not sure if we want to wait until next Tuesday to see what her counts are. In the morning I will reevaluate and probably see if we can take her in for a quick blood check. The signs of low red cells are fatigue, pale skin and a pale tongue. Serious signs are dizziness and light headedness. Tonight before bed she asked me to call Dr. Perez tomorrow. That is not a good sign to me. I am praying that she was just very tired, ready for bed and by morning she will feel better.

Karina is eating better, still battling a sore in her mouth and intolerant to any discomfort. She fell asleep on her teacher today right in the middle of reading. All of a sudden it got very quiet and sweet Loretta, her teacher, just waited until she woke up. We had a wonderful lunch with our friends from Children's today. Thanks Allison, Nancy and Erin for brightening our day and the delicious lunch.

Please pray for Karina. She spends much of her day fiddling with her needs of this and that. So much so that it interferes with getting anything else done. She is battling cuts on her hands from excessive dry skin from the GVHD despite the aquaphor and gloves at night.

Karina just needs your prayers tonight. Please pray for me to not feel frustrated that her health still has such acuity when it should be stable. Pray that I can find healthy and creative ways to occupy her time.

Thank you for checking in. We are grateful for the prayers that you all faithfully offer up for Karina. These prayers carry us through as God reveals himself to us daily.

Blessings,
Dana

Sunday, May 11, 2008 9:48 PM CDT

Happy Mother's Day! Today has been a super day despite the heavy downpour nearly all day. The sun was shining inside our house today as we not only celebrated our mothers but celebrated the gift of being a mother. My parents drove up from Williamsburg for the day which was so special and my in-laws also joined us. I decided weeks ago that no one was cooking so take out Chinese food worked just fine. Dwight and the kids made sure I had a great day and I did. Today was not a joyful day for some of my friends who have lost children to cancer. I prayed for comfort for each of you...........Tracy, Audra, Stephanie, Gena and Sandy.

Karina is doing fine. She is tolerating her low hemoglobin very well. We chuckle as her skin looks so good, not red or rashy, then we laugh because she has no red cells to show the true color of her skin. Her tongue is an indicator and it is so pale white. She is eating much better and the "old" baby anbesol is working great to numb the pain before she eats.

Karina takes one cat nap during the day and is sleeping pretty well at night. She has pretty severe mood swings (from the steroids) these days. Funny picky things that really make no sense but I do what she tells me and we get along just fine. I.E. her socks can not be up much over her ankles or she says to pull them down, she wants chap stick about 35 times per day, more steroid cream even after applied, zip my sweater she says one minute then says mommy I told you not to zip my sweater, fix my covers (on the bed) higher, lower, this way and that way.............and on and on. She requests very specific foods. Tonight we had Mexican food but not Karina; she wanted linguini and clam sauce. Our house did not smell like the local Cantina! I made it and she ate it. Our fridge is filled will little containers of this and that displaying my efforts to satisfy her taste buds. I told Dwight tonight that by the time she is off steroids and back to normal, I will be the one with the mental illness. Just kidding. Three years ago we could not laugh about this, two years ago we were really not laughing about this and a year ago we decided we had better laugh about it and move on. Never withhold food from a child on steroids.

Dwight and I had a date night last night with our dear friends Dan and Mary. It was so nice to get out for a few hours and enjoy friends who are so encouraging to us. We told stories from old times, laughed about the present and shared dreams for our futures. We see God working in this couples lives and felt excited to allow God to do the same in ours.

The week ahead is full. My prayer is that I can share Christ, my faith and encourage others each day this week.

Blessings,
Dana

Tuesday, May 6, 2008 10:09 PM CDT

The days are rapidly going by at our house which usually means that we are busy. We are! Karina had a few problems last week with bloody noses in the morning and a very poor appetite. She has been in good spirits so we were not too concerned.

We headed to Williamsburg to see my parents, grandparents and sister and family. It was a good weekend as we celebrated Braydin's birthday with his cousin, Carter, and his very best friend Ian. Ian, his sister and mom flew from Tampa to the area to visit their dad in school and were able to spend the weekend with us. We had a wonderful time and topped off the weekend with a night at the Great Wolf Lodge. Thanks McCullough's for the great effort to spend time together. We made a few more memories!

As we arrived home on Monday evening, Karina became sick in her stomach with tremendous problems. This continued throughout the evening and into the night. Washing the sheets and her clothing many times kept me up into the wee hours. She had a bit more trouble today until this evening. I had talked her into eating some beans to begin working on increasing her iron count. Brilliant idea, right? Being the good girl that she is, ate her beans then proceeded to give them all back to me. I pray this throw up stage is the end of the virus (the doctor's opinion) and she can get back on track soon. Karina continues to loose weight and we need to stabilize her weight now.

Karina and I headed into Children's for our apt today. Her blood counts came back pretty poor. Her red cells are very low requiring a transfusion. The doctor wants to hold off because if they give her red cells then her bone marrow that is struggling to work will get lazy and not produce as it should. Dwight and I feel strongly that her red cells are down from poor nutritional intake the past few weeks. How can we let this happen? You lead a person to food but you can't make them eat. I am standing on my head to feed Karina obviously without success. Please pray that she feels better soon. It is a cycle that is ugly. She has a little sore in her mouth, doesn't want to eat, then feels tired because of no food in her stomach, sleepy most of the day, getting no school work done, no motivation to do anything etc............you get the point.

We are to watch her closely to observe extreme lethargy and bring her in for a repeat blood count if we feel the need.

There are heavenly gifts daily as God reveals himself to us through Karina's illness. Please continue to pray. If someone asked me how I am doing today my answer would be "tired but hopeful in Christ for Karina's healing".

Blessings,
Dana

Wednesday, April 30, 2008 8:29 PM CDT

Good day to you. Karina was up off and on all night throwing up. Just what you wanted to hear to get your day off on the right foot! Strange situation. No other symptoms just sick. She was up at her usual perky 7 am but faded quickly into the top of the kitchen table about 1 pm. Sound asleep with a pillow under her head, she gained enough energy to do some homebound studies with her teacher and enjoy her friend, Alexis, this afternoon. Karina learned a new weaving technique that was so cute and fun. She did an amazing job with the yarn and finished the project with only a little mommy help.

Karina is struggling to get enough food in daily to maintain proper nutrition. (Thanks Nicole for the million dollar vitamins that keep my mind at ease). I am standing on my head to buy, fix, create, force, beg and bribe her to eat. Hum? She ate herself to obesity due to steroids just a few months ago so no wonder nothing looks or sounds good anymore. Those were the days of a dozen cheese sticks a day and four bowls of peas and pasta. No wonder. I often chuckle at the eating disorders she may have some day after having no realistic eating patterns most of her childhood. Small concern in the grand scheme of things.

Yesterday, I had a lengthy meeting at the kid’s elementary school regarding Karina's re-entry back to school. This meeting was created back in the winter when we felt that Karina would be ready for school this Sept, 2008. Reality is that she is not going to be attending public school in Sept but we pray that sometime later in the school year she will be healthy enough to attend. The highlights of the meeting were. We are requesting more homebound instructional hours. We receive 5 a week and get 3 1/2 to 4 per week in reality. We are requesting 10 hours a week. The public school is very flexible as to how and when we reintroduce Karina to the classroom. They will let her attend any amount we see fit and work up from there. Great plan and exciting for us.

Karina is not a child to keep at home. She loves friends, interaction and the concept of "going" to school. I am so impressed with her desire and ability to learn. I don't really know where she gets the motivation when she is tired, bored and not always feeling well. She will thrive in a classroom setting some day. How do I keep her psychologically balanced? I do worry about this. She continues to see the psychologist at Children's during our Tues apts. This is about twice a month.

As summer approaches, I see our schedule changing a bit. I would like to shift Karina's therapies out of our home and into the outpatient rehab center. I would like them to be scheduled closer together on the same days. The boys will be home all day and we need to get some kind of system in place so that we are productive and using our time wisely. These are prayer requests.

Tonight Karina and I read a passage from her devotional Bible. It was talking about God having a plan for our lives. He knows the story for our lives, it is already written. The comparison was fairytale princesses all facing hard times in the beginning of their lives and then eventually a happy ending. The scripture for the reading was Lamentations 3:22-24 “The faithful love of the Lord never ends!" His mercies never cease. Great is His faithfulness. His mercies begin a fresh each morning. I say to myself, "the Lord is my inheritance. Therefore, I will hope in Him!"

Thank you for the guestbook entries. It is so touching to us to hear from so many friends. We cherish each word and appreciate your encouragement and prayers.

Blessings,
Dana

Monday, April 28, 2008 11:30 AM CDT

Karina is doing well. We had a good weekend watching baseball games all day Saturday. They boys and their teams are improving and it is fun to see them hone their skills. Yesterday we went to the Virginia Ballet Company's version of Snow White with mom and dad Sones. It was beautiful and even the boys enjoyed it.

The last ballet performance we went to at Christmas time brought back memories of Karina's desire to be a ballerina. It was a sad time in our hearts realizing that those dreams may be shattered. Today, though we know that God has other plans for Karina's life.

I recently had professional photos done of the kids. This decision took some time emotionally for me and attempting to find a time in Karina's life that her physical changes were what I wanted to capture. Three years ago, my friend Christine began taking photos of my kids in OK and she knows her business and knows my kids. I have created a "Christine Wall" in my house again with all new photos. This is a step in accepting Karina the way she is, perfect! The boys are just cute. You can hit on Christine's blog and see a few photos. Her site is impressive if you click around you can see her other works. Her friendship has been a blessing to your family in many ways and we cherish it.

http://christinegacharna.com/blog/?p=678


Blessings,

Dana

Thursday, April 24, 2008 9:41 PM CDT

Life has been so busy I am tardy on an update so here goes. Monday, Karina's brownie troop leader and her children followed us into Children's to donate a check to the art therapy program in honor of Karina. Glynda is the troop leader and a friend I met in Spokane, WA 2 assignments ago. She was also my neighbor in OK and now lives 2 miles from us. She has been a wonderful friend and dedicated spirit trying to make a difference for children. She has helped Karina earn her way through Brownie's and made neat book markers and stationary to raise money for the art program. See photos of Karina with her girls donating the check. (Glynda, how did I not get a photo of YOU? You owe me one :))

Tuesday, we made our trek back into children's this time for business. Karina is gaining back a bit of the weight she lost two weeks ago. Her blood counts were great. Her red cells were down a bit but probably due to poor diet the past 2 weeks. We had chili for dinner last night at her request. She does know a bit about nutrition and a ton about her blood counts.

Karina also received a 3 hour infusion of antibodies. She slept for a bit from the benedryl (to prevent a reaction) then proceeded on with her day. We left the house at 9 am and went straight to Braydin's baseball game and got home at 8 pm. Unfortunately, I did not have benedryl or a nap. I was pooped but worth it all. Karina sat in her little chair with her nose to the fence the entire game. I think she needs a megaphone and pom poms! I was so proud of her for not complaining about anything during the game. She is learning contentment, the art of distraction and to joy of cheering for her brothers at games.

The doctor lowered her steroids a tad and we will hold here for a month before further reduction. He wants to go slow since we had a flair of GVHD the last time. I was blindsided as we have not discussed or thought about this since last fall. It is the procedure very similar in every way to dialysis. We are asking you to pray that we can get off the steroids with out the aid of this machine. The time for us and the fatigue for Karina would be a real set back. She is just starting to feel normal and be able to do normal things, sort of. We don't want to step back. Please pray that her body begins making steroids on its own and that the GVHD stays a t bay.

Karina has some stiffness in her left hand. I have noticed this over the past two weeks. I am afraid that she has some damage from the GVHD flair last month. She is trying to work it and keep it moving but I am not sure this will resolve itself. Please pray about this as well.

The boys went to a Yankees vs. Orioles game in Baltimore on Sunday and Karina and I made our way through the inner harbor. It was great fun. We road the "Duck" land and sea vehicle, got caught in the rain, got new shoes and had a good time. Unfortunately, the boys had my camera so no photos of two rain soaked happy girls.

Karina has been in good spirits which tells us that she is feeling pretty well. She walked outside in her walker a long way today. A real challenge and required rest breaks but she did it.

Thank you for checking in and for your patience. We don't head to Children's for two more weeks. Yea. My meeting at her school is on Tuesday. Thank you for praying.

Blessings,
Dana

Saturday, April 19, 2008 9:12 PM CDT

Karina is doing just fine. She tailgated through three baseball games this week and two today. I have to get a picture of her sitting in the back of the van in an open up chair, eating and doing crafts. She is dubbed the princess in our house and this image is the epitome. Her skin is looking really good to Dwight and I. It will forever be damaged, red splotches, brown age marks, severe stretch marks but the underlying color is white the way it should be.

We purposely left her in the car with sun block on to prevent any extra redness. We head to Children's on Tuesday and are praying that they are as pleased as we are. She has had cuts/split skin on her hands and has favored them the past week. These are slowly healing but in the world of germ-free living it is hard to keep constant lotion on them. She has not been willing to use her hands normally and we need that to return. She is using her walker a bit more in the house. It is interesting when she has to get up and get it herself how the demands and needs decrease. It is hard to make her work.................she is so patient and sweet truly going with the flow lately. But, in the long run we would be doing a disservice to her by continuing to wait on her hand and foot. Tug at the heart decisions daily.

Tomorrow is a mommy and Karina day as the boys and daddy head to a Yankees game. I am praying for special time with her.

Please continue to pray for our friend Gena who lost her little boy this week to cancer and for our friend Jane who was just diagnosed.

My grandma is home from the hospital, on dialysis 3X/week and doing well.

Blessings for a great Sunday.

Dana

Monday, April 14, 2008 8:26 PM CDT

I wanted to give you all an update not related to Karina. She is doing fine, not feeling 100% but eating and keeping me on my toes.

Sunday afternoon we lost a sweet friend to cancer. His name is Lane and he lives in Altus, OK. Please pray for his mom and grandparents as they grieve. At this moment, their is a viewing in Altus and I can see the funeral home and the packed parking lot. There must be thousands of people there hugging Gena and saying I love you to Lane. There are probably people there who never even knew Lane but want to be there to support this precious family. That is the way Altus is. They love all who live there. Tonight my heart is back in Altus.

My grandmother remains in the hospital. She began kidney dialysis last Saturday and will receive this treatment three times a week. Once home, she will go by transport service to and from the hospital for treatment. My parents are dividing their time between my grandfather, who has dementia and unstable diabetes, and the hospital with my grandmother. They have their hands very full right now and continually care for them with gracious hearts. There are dozens of doctor apts a month and then of course have been coming two hours up the road to visit/help our family. We are doing fine without them but miss their frequent visits. Thank you for your prayers for my grandma and family.


Philippians 1:3-6
"Every time I think of you, I give thanks to my God. Whenever I pray, I make my requests for all of you with joy, for you have been my partners in spreading the good News about Christ from the time you first heard it until now. And I am certain that god, who began the good work within you will continue his work until it is finally finished on the day when Christ Jesus returns."

Favorite Bible verses bring comfort and encouragement to me and hopefully to you too.

Blessings,

Dana

Sunday, April 13, 2008 9:28 PM CDT

Dwight and I are realizing how sensitive, intolerant, weary, impatient and bothered we are when Karina gets sick. We are not the ones suffering like she is when illness strikes but the past few years have worn our tolerance down. We simply "loose it" (loosely speaking) when Karina gets sick. We then realize that God is drawing us closer to HIM, waiting for us to hand our burden to HIM. The fear of GVHD outbreaks leading to medication increases setting us back months in progress drives us nutty. This is the cycle we have faced over and over again. When and how will it ever end unless the medication is reduced then eliminated? The timing is in God's hands as well as the doctors decisions. Thank you for praying specifically for the plan that is ahead of us.

Karina had a much better day today. She ate a decent amount of food in small increments as her stomach must be retrained. She was in good spirits and easily humored and easily annoyed by Braydin and Torin which is just the way we like it around here. To her them all discuss something together is music to our ears.

Karina's skin looks good. Her hands are still very dry and peeling causing deep cracks that are very sore. We are praying for quick healing.

We are grateful for your prayers. We thank you from our hearts beyond what words could say.

Blessings,
Dana

Saturday, April 12, 2008 8:08 PM CDT

Karina is about the same today as yesterday. She had trouble through the night vomiting but today seems to okay. Maybe because she is on day 3 of no food. She is afraid to eat because she fears throwing it all up and after what she went through, I don't blame her. She is very weak and tired. Shut down socially, which is familiar to us. Since there is no great shouts of joy just yet that her virus is gone, I posted new photos.

Thanks for checking in and praying. Please also pray that the doctors make a wise decision next week as to the plan for reducing her immune suppressive drugs. It is way past time that she should be on them but because of the GVHD, they have to go very slowly. In the mean time, she remains at risk for infections such as this virus. The battle continues on. Praise God that He has a plan for Karina for eternity.

Blessings,

Dana

Friday, April 11, 2008 1:01 PM CDT

We are at Children's after a long night of sickness for Karina. I avoid the ER at all costs and felt that Karina was probably already dehydrated so I called Children's this morning and they said to bring her on in. My father in law came in a flash to be with Torin and get him on the bus and we headed in. Karina's blood counts came back with an abnormal hemoglobin so they drew another level and it came back normal. They have fluids running and we are waiting for the sodium and potassium levels to come back from the lab before we have the green light to go home. I do not know of any reason why they would keep her overnight. She looks good, has good color and is in good spirits when she is not sleeping. She is not keeping any food or liquid in at this point. The doctor said these viruses usually run 24-48 hours but hers may hang around longer since she has no immune system to fight it off.

Each of these sicknesses that Karina gets remind me that she had umbilical cord blood for her transplant. This blood has never been exposed to the hundreds of viruses and germs that are floating around. She is like a baby and toddler all over again getting every germ under the sun only this time it is a danger to her body. We pray that God will deliver her from the misery and that she will feel better soon.

Thank you for your prayer.

Blessings,
Dana

Thursday, April 10, 2008 9:19 PM CDT

Karina woke today feeling fine, ate breakfast and by 11 am was "sick as a dog". I have not seen her this sick in a long time. She is throwing up everything she takes in and has serious diarrhea. She is miserable and weak. She also has a fever that we will need to watch closely. I ask that you pray for her to feel better by morning. She has suffered enough in her life and I hurt all over to see her this way. Thank you for checking in.

Blessings,
Dana

Tuesday, April 8, 2008 8:59 PM CDT

We spent the day at Children's for Karina's routine apt and all is going well. The doctor decided to hold off for two more weeks on her antibody infusion as her level is holding steady. He also decided to reduce her immune suppressive drug back to its previous level to reduce the stomach pain Karina has had. The steroid level will remain the same for the next two weeks to allow a slow and hopefully steady reduction trying to allow her body to "get a clue" and make its own. Karina's blood counts are steady which we were happy about. All went well with the breathing treatment for medication to protect her lungs. She came home tired but in good spirits. We are battling excessive dry and cracked skin on her hands so we can pray for healing and comfort.

Overall, Karina is doing okay. She has cheerful moods at times and flat moods as well. She is intolerant of slight discomforts and this prevents consistence progress in school work and therapy. Overall, considering what she has endured in her young life and the constant uphill climb for energy and good health, I would say she is doing great. She is tough natured, content, easily cheered, patient and sweet as sugar.

I recently read a neat story about a little girl wanting to run through the rain with her mom believing that God could "get them through anything" after hearing her mom say this about her dad's cancer. This loose statement by the mom was taken literally by the little girl. I have learned to run through the rain because it feels good and my clothes will dry. I have also learned to laugh again at things that I "pre-cancer" would have scolded. I ran for the camera this morning when Karina and Torin were laughing hysterically having a bubble blowing contest in their milk. I also ran for the camera when Karina was so mad she cried because Torin would not let her wear his Darth Vader voice changer helmet. He finally gave in (without my force) and she looked so funny and sounded even funnier. We all laugh at the boys dance moves in the kitchen after dinner when they should be clearing the dishes. We simply have learned to laugh more, fuss less, relax and enjoy the preciousness of life. I have gotten on my soap box and will stop by encouraging you to not sweat the small stuff, hug those you love extra hard today and be thankful for the many blessings that God has bestowed on you.

My grandma remains in the hospital. It has been recommended that she start kidney dialysis in the near future. Preparations are being made for her to return home with help in a few days. Please continue to pray for her as she has many discomforts and pain.

The boys are hot and heavy in baseball and both their first games this week have been rained out. They are doing well and in the home stretch of the last quarter of school.

New photos!

Blessings,

Dana

Sunday, April 6, 2008 8:40 PM CDT

Karina has had a good weekend. She is battling stomach pain and I suspect it is from the increase in her immune suppressive drug. HUM????? I think my last email started the same way. I am learning the cause of her discomfort, what drug it is and how to fix it. Get rid of it for a few doses and see if she feels better. I will let you know in a few days. Why did someone not make me the doctor? Just kidding.

Karina and I sit and read the guest book entries and I read ten or so to her at one time. She loves it. We love hearing from each of you and I have such a strong desire to email each of you back but my caring for Karina, the boys, the house and life prevents me from doing that. Just know that it brings smiles to our hearts to read your messages. We send a huge hug to you.

Friends from Altus, how awesome you are to find Karina's website and to continue to pray for her. She loved hearing from her old Sunday school teacher, speech friend, Zek, the class friends in PA and each of you. After all that Karina lost, she did not lose her memory. God is so good to have spared her that as a reminder of life before all this sickness.

Our "kitchen church" today was on praying for God's will for our lives and not just praying for what we want. It is good to ask for what we want and what we think is good for our lives to make them better but we should close our prayer thought with asking for what God desires for our lives. We should only want for our lives what God wants for us and that will be what is best for us. True.

Karina received a package this week without a card. I was so bugged because we could not write a thank you note to the person expressing our appreciation. As I have wondered who this generous person is all weekend, I realize that I may not ever know. Walking through the house, using things that people have given us, recalling the time and place of receiving many of the gifts Karina has received I realized that I cherish the person that supplied these things as they are a token of love and friendship. It serves as a reminder to me to pray for the person or family that gave the gift. Please know that I lift you up in a simple prayer when I see your gift.

My grandma had been in the hospital and I had asked prayer for her. She came home for about a week and is now back in the hospital. Please pray for her comfort and healing. Also, our friend Kalyn from Oklahoma is battling side effects of lupus. Please lift her family up in prayer as well and the safe return of her husband from Iraq. We continue to keep in touch with the world of kids with cancer. Please remember to pray for precious children battling cancer and their family members.

Thank you for checking in.

Blessings,
Dana

Thursday, April 3, 2008 8:05 PM CDT

The days are flipping by and we are just enjoying our time off from Children's this week. There are very few weeks over the past few years that we have not had some kind of doctor apt. Karina is doing well. She has been battling nausea in the morning and I am quite sure that it is from the reduction in steroids. She is on an every other day dosing now and steroids do serve as an anti-nausea med, so the reduction is probably being felt by her system. Today we tried crackers first thing in the morning and it worked. Easy solution, we pray.

I posted new photos. Karina's skin is continuing to heal. Still red at times but no rash and no thickening or stiff joints. These are the big risks and we praise God for sparing her permanent problems at this point.

Last week at the neurologist, Dr. Civatello said that she feels Karina will walk on her own again. We have NEVER heard these words and felt so encouraged. Karina heard this news and promptly came home and asked for her trunk/chest support to be removed from her walker. She can walk in this walker independently but supervised. Now we just need somewhere to go to use it. :) It is hard to motivate in our four walls as large and beautiful as they are we look forward to warmer weather for walks outside and to the mall. Those days will come.

The boys are doing well, hot and heavy in baseball. We love this time watching them, cheering them on as well as the time to get fresh air and meet others. I would describe life right now as slow and steady with blessings daily as God continually shows us his healing hands on Karina. Each day there is a message of God's presence in our lives whether it is a bible verse read, a phone call, an article or an opportunity to share our faith. God continually molds our brokenness to draw us closer to HIM. Right now we are resting in HIM.

I appreciate my parents and in-laws so much as they still help however they can even to let me have lunch with friends. I saw a friend yesterday and the first thing she asked was if Karina was sassy today. Kathy knows Karina very well. I must be like living with the white wall because she is quiet most of the day but as soon as her brothers are around, especially Braydin as he is a "ham" she lights up, laughs, teases, makes jokes and sometimes argues with them. I LOVE IT! The dynamics of three children is very different than two and we never thought we would see her interact this way after her illness. We are blessed.

Thank you for the many messages on the guestbook. We love hearing from each of you and makes us miss you.

Thank you for praying!

Blessings,
Dana

Monday, March 31, 2008 11:37 AM CDT

Interview with Karina

What is your favorite color? Pink

What is your favorite food? Peas and Pasta (thanks Uncle Sonny), Ravioli

What is your favorite time of day? Noon because the boys come home. Today is Monday and they are in school just half days.

Where is your favorite vacation spot? The beach

Who is your favorite Disney Princess? Cinderella


What is your favorite subject in school? Math


Who has been your favorite teacher? Mrs. Barham


What is the funniest thing you have ever done? Go on Mount Everest rollercoaster at Animal Kingdom

What is your stuffed animal’s name? Bandit

When did you ask Jesus into your heart? March 2006

Why do you think God chose you to get cancer and then get better? Because he thinks I can do it.

If you could wish for one thing, what would it be? To walk by myself again.

If you could fly to the moon would you? Yes

What do you want to be when you grow up? A doctor

Where would you want to live anywhere in the world? Florida because it is hot there and Amy McCullough lives there. Too, because Disney World is there.

What is something you are looking forward to? Disney World, Make a Wish trip. (Later this year)

What is your favorite movie? 101 Dalmation's with the real people, Chitty Chitty Bang Bang (with Dick Van Dyke)

What do you do for fun? Crafts and homework and friends

What is your favorite sport? Soccer


Love,
Karina

Tuesday, March 25, 2008 9:07 PM CDT

Karina is doing very well. Several words come to mind.....sassy is my favorite, spicy, smart, sweet and full of life. Karina's blood counts today at Children's are the best we have seen since before she was diagnosed with leukemia. That was more than three years ago. Her counts are looking a lot like yours and mine and we are so thrilled. There was not much to talk about today with the doctor but how wonderful our vacation was. We won't go back for two weeks as long as she continues to feel well.

The week before we left for our trip, we saw God's hand healing "the Brian's". Complete miracles! We have two friends named Brian that have touched our lives along our journey through childhood cancer. Brian #1 lives in Altus, Ok and Brian #2 lives here in VA. Their cancers are very different. Brian #1 has battled neuroblastoma for 7 years and has no cure. He and his mom spent time at Sloan Kettering in NYC last month to see what further treatment could be done after relapses and long term low dose chemo. They came home with a clean bill of health.........no treatment necessary.........no signs of cancer...........go home and live a normal life. Unheard of in the world of neuroblastoma. Brian #2 has battled osteosarcoma. After successfully removing the large tumor in his leg and a year of chemo he returned to honors classes in his senior year of HS. A spot developed on his lung 6 months ago and doctors became alarmed that there may be a return of cancer..........the lungs are not an easy place to treat cancer. Brian went in for surgery two weeks ago and the doctor could not find any sign of a tumor..........made another incision in a different location and still no tumor............placed his finger in the incision to further feel for a tumor and it was gone. Miracles. God provided miracles. No question in my mind. These families are seeing the power of God to heal.

But what about when God says no to healing on earth. Right now God is saying "no" to our friend Lane. Please pray for him, his precious and faithful mom Gena and his grandma and grandpa. Gena and her mom came and donated blood for Karina just after she relapsed in June of 2006. I was emotionally overwhelmed with the news about Karina and the idea of hundreds of people coming to donate blood. I saw Gena and her mom in the line and when I thanked them for coming they said, "well it is the right thing to do and we are happy we could help". Please pray for them to feel God's comfort, for Lane to not feel pain and for them to know God sees a much bigger picture, an eternal plan.

I have vacation photos and will post them tomorrow.

Also, my grandma is in the hospital and could use your prayers.

Blessings,
Dana

Saturday, March 22, 2008 10:12 PM CDT

We arrived home from a week of vacation rested and filled with memories. I don't know if I like traveling without a computer but I found myself relaxed and finishing books that I had started but not finished. The mail was piled high and the computer inbox was filled with messages when we got home........what a blessing to receive cards of encouragement and emails friends. We feel your embrace. Thank you.

My mother in law made hot cross buns (so beautiful that Dwight thought they were from the store......) along with a vase of daffodils on the counter. What a welcome.
We spent a week on Fenwick Island just north of Ocean City, MD. We found the off season at the beach perfect as things were not crowded for Karina and there was no traffic. Those of you who live in the DC area or have lived her before or know how much my husband dislikes traffic know that this was a real perk to our vacation. People drove the speed limits and obeyed traffic laws......I am not kidding. It was a calm and relaxing aspect of our trip.

We did a bundle of fun things this week with cool and windy weather. Karina participated in all of them. We went fishing (no surprise) as the boys had the poles out the window with bait as we arrived just in case a fish was jumping. We went to a kite festival and flew our new kite with hundreds of others (a beautiful site), hit the noisy and addicting arcade (my kids first experience), played indoor putt putt golf where Karina walked the whole course with Dwight's help, out to her first restaurant in a year and a half........Grotto's pizza for those of you who know the area, dug in the sand, collected smooth rocks along the surf, witnessed the beauty of Assateague Island and the wild horses X3, movie night's X4, outlet shopping, The Salisbury Zoo and pure quality family time.

Sorry for the lapse of time in updating the website. Karina did well the whole week. She had one day that she was sick with throw up and sharp stomach pain which came on very suddenly. It was strange but resolved itself. She is still in the process of reducing her steroid dose. The eating frenzy is slowing down for her ...........and me. I am wondering how I am supposed to lose 10 pounds when I cook for a child that has been on steroids for a year and a half. Impossible is my excuse.

Karina has an appointment at Children's on Tuesday for blood work and a look at her skin. Wednesday she has a neurology apt.

We are happy to be home. There is unpacking to do and emails to answer but tomorrow will be a day reserved for remembering the blood that Jesus shed for us while dying on the cross for our sins and His resurrection from the grave so that we may live. Around our house, blood has great significance as we know that our sins are forgiven because of the sacrifice God made sending his only son to die for our sins. We also see it as life. Eternal life for those who believe and new life for Karina has He provided blood for her to live cancer free. I pray that you have a beautiful Easter Sunday celebrating Christ that is not dead but alive.

Blessings,
Dana

Friday, March 14, 2008 12:59 AM CDT

It has been a few days since I have updated but all is well. Our wonderful babysitter, Renee, was home for spring break so I took full advantage this week running around and having fun.

Karina's apt on Tuesday went well. Her blood counts were good other than a very high white count and liver functions being elevated. These are both not normal for her and the doctor feels that both are due to medication changes, increased steroids and adding dapsone. Since, both have been changed. Karina was due to get an infusion of antibodies but the hospital was out of the product. So, today we have returned for the antibodies which takes about three hours to infuse.

Karina has been in very good spirits and increased energy. She has improved in her fine motor skills. She tied a ribbon into a bow on her sweater, is opening string cheese packages alone etc.....she is back to climbing out of the car on her own again. We are thrilled to see her willingness to be independent. Therapy is going well. Karina still requires help to walk and tolerates short distances. Our prayer for her is to return to school in the fall with her walker which is a large and supportive.

The boys are on spring break this next week and we are excited to spend time as a family, relaxing. We have the week off from Children's.

We appreciate your journal entries so much. We feel connected to each of you as our lives are so unconnected to friends at times. The miles now separate us but our friendships are deeply rooted in memories with each of you. To those of you whom we have never met, thank you for your prayers and support from across the country. No words could truly tell you the depths of our gratefulness to each of you.

We continue to have our morning bathroom prayer and Karina reminds me daily. About 7:30 in the evening she says, "mommy, that prayer made me have a good day." God is good daily showing his grace and mercy on us.

Blessings,
Dana

ps no spell check on this program.......sorry.

Sunday, March 9, 2008 8:39 PM CDT

Karina had a wonderful weekend. She has returned to herself after 3 weeks of fevers, fatigue, lethargy, poor appetite and sickness. Praise God for delivering her out of the terrible mess that she was in. Unfortunately the result of her feeling better is also due to the increase in her steroid dose. We went up for five days and now are slightly lower and pray that the lowering will go quickly and safely for her body.

Karina completely surprised me yesterday when she asked for a school book to do on her own. She chose a book that is simplier than her current curriculum but allowed her independence to read the directions, write the answers and color as necessary. Unbelievable accomplishment for her as the past few weeks we could not get her to even feed herself as she sat bundled under blankets.

This weekend she has not been cold or unpleanant but cheerful, happy, hard working and eager to be independent. We are struggling with very swollen feet and calfs as well as rising blood sugar levels due to the increased steroids. Her skin is looking much better and the sores are healing slowly. I am cooking up a storm to apease the increased infatuation with food. We currently have in our fridge; white chili, red chili, artichoke dip, hummus, enchiladas, macaroni and cheese etc.......anyone care for leftovers? Steroids due a number on the phychy. Karina seems to hold one mood nicely until I tell her she should not have something to eat (because of high salt or sugar content) and then I get the, "you better give it to me or else" mood. All worth a smile as I definitely don't sweat the small stuff these days.

We had the opportunity to spend a few hours with special friends this weekend. Their home is now Belgium and the thought of missing this opportunity haunted us. We had the Seguin's over for lunch and a quick visit. Karina was in heaven as the girls did crafts and ate lunch with her. The boys enjoyed the company so much. This sounds so simple but after living in isolation for a year and a half the reality of our social needs hit hard. After they left, I felt joy in my heart, felt a grin on my face and a peace that only friends can offer as this family reached our souls today. I need people in my life, in my house and at my dinner table. The sacrifice of keeping Karina healthy and our home clean for her is vital, but our souls need nurtured and we will continue to work on ways to do that safely. Thank you Seguin's for today.

Thank you for praying for Karina. Please pray that the steroids can be reduced quickly and safely to not leave us in this giant step backwards.

Blessings,
dana

Wednesday, March 5, 2008 8:33 PM CST

Today God revealed himself to us! The day began pretty much the same as most. A tired, fussy and uncomfortable Karina woke for her morning bath routine. Today was different. As we finished up her bath, got all the creams and greases on her skin and clothes on she began to cry. She said, "Mommy please order me some hats with hair." We learned about these some time ago but have never seen one or owned one. I said that I would do that for her. Then she continued to cry and blurted out, "please just pray, mommy." So we prayed while she stood and I sat on the edge of the tub. We prayed for our hearts to be open to God plan today, for our attitudes to be in the right place, we prayed for hair etc.............the day took a turn for the best soon after praying. Karina made a choice to be pleasant, energetic, willing to do things and it showed for the rest of the day.

About 3 pm she said, "Can we walk to the mailbox and see if I got any mail today?" I was shocked. She has not done this or had the desire for many months. So off we went to the mailbox. I did not feel nervous that there would not be anything. I was just thrilled that she wanted to walk. But, God knew that there would be mail for her today. There was a letter and it was from our precious friend Deanna Genesi (she often signs the guestbook). Inside was a card written in pink ink with a beautiful story of a teacher friend of hers who had cancer, keeps up with Karina and wanted to send her ten dollars to help toward the cost of a wig. Hair, wig, God, the prayer!!! We are walking in God's favor daily if only my heart was alert enough each morning to pray and ask for his blessings.

A little while later, the phone rang and it was Focus on the Family. I wondered the reason for the call when they have never called to solicit. A friendly lady said that she was just calling to thank us for our support to their ministry over the years and was there anything she could do for us. I asked about receiving Dr. Dobson's monthly newsletter and magazine and she corrected our address to make that happen. There was a mistake from our move to VA a year and a half ago. She apologized a few times and I said no problem that we have been busy with a sick child and not really able to read it until now. She then asked if I would tell her about our child. I did in three sentences and she asked if she could pray for us. We bowed our heads on the phone and she prayed for Karina and our family.

God is real. God hears our prayers. God wants us to know he is present in our lives. God is love. We had a great day in His favor. You can bet Karina and I will have daily bathroom prayers and we hope you do to!

Blessings,
Dana

Tuesday, March 4, 2008 9:00 PM CST

I know I am tired when I have to go back and read the previous entry to know what I said and where I left off. Pretty gross the thought of a cold with a mask on. Well, that continued through today until I felt less infected.

I spent part of the weekend at a women's conference with my friend Mary and had a relaxing time learning how more to serve our loving God. I am praying that she does not get my cold. I did go to the doctor yesterday and it seems to be just a viral cold.

Sunday we attended the Professional Bull Riders event in Baltimore thanks to a generous company that emailed with tickets. We were leery as you can imagine but really needing to allow Karina a touch of fun after a rough few weeks. After 45 minutes of getting her comfortable we went in and were so glad we made the effort.

We attended a pizza party before hand sponsored by Believe in Tomorrow, got to meet real bull riders then were offered a private back stage tour. We got a close up of the bulls, all the riders, a ground floor view of the opening show to include fire, fireworks and loud music. Karina was placed in her stroller for each bull rider, after being announced, to stop by and shake her hand and say hello. It was special. More so than all of that, the kind gentleman, Todd Pierce, that took us on this tour asked if we could come together on the stage behind the scenes. We did so and he asked if he could do what he loves to do best with people and that is pray. He brought us in a circle around Karina, took off his cowboy hat and got on his knee and prayed over Karina and our family.

We learned more about Todd as we spent the next hour with him. He was a professional bull rider for 8 years and now travels with the team as a missionary. He is married and has three boys of his own. What a God blessed day we had and all without making us feel like we totally infected Karina with germs.

Today we went to children's and back to reality. Karina remains with fevers off and on, very sore and red skin all over, a completely bald head and overall miserable disposition due to symptoms. She is so sad about her hair but seems to not tolerate the wig we have for her even to try it on. I am wondering what the solution is for a softer better fit. Research when I have a breather.......

The doctor is upping Karina's steroid dose as well as her other immune suppressive drug. This is a significant step back in progress but necessary to get the skin condition under control. She was getting so close to being off steroids and now going back up brings us the same risks of diabetes and high blood pressure.

Karina seemed relieved today in some ways to know that she is going to start to feel better. Please pray that this will all come and go quickly. The wean process off the steroids will begin again in some ways as it did a few months ago. Pray her skin heals and she feels better. Karina's blood work was decent today. She lost another 2 pounds which is not necessary for her to do at this point but she has just been wiped out.

Today was Torin's birthday and a big family celebration here. I am very fatigued but the energy to make his day special was well worth it. My parents and in-laws made it all happen.

The road is tough but we walk by faith that God is in control.


Blessings,
Dana

Saturday, March 1, 2008 7:33 PM CST

Karina has had a rough few weeks and the fever and unknown sickness has caught up with her. She continues to decline in her energy, desire to eat and overall disposition. Her skin is pealing with areas of raw sores that we are caring for. We can't seem to get her motivated for school work or activities. The weather here remains cold and Karina has great intolerance to cool temperatures. In the house she is cold so we keep a heater by her and warm rice packs on her lap. We are feeling discouraged as the wonderful improvements she was making have been taken from her. We pray that in time, she will start to feel stronger, more willing to eat and back to her sweet personality.

Dwight and I had the pleasure of having a quick dinner together with our dear friend, Barre last night. I then headed of to a women’s conference with my friend Mary which also lasted all day today. Thank you to the Sones for their time watching the kids and having them all over today while I was gone. The conference was excellent encouraging me in my walk with Christ. Having time with Mary and 7 hours of "church" was blissful for me.

Unfortunately, I have been suffering from a terrible cold the past two days and hope that a long night's sleep tonight will help me feel better tomorrow. I can not be close to Karina without a mask on and when your nose is running and you are coughing, it makes for a real mess! Now I know how Karina feels when she has to wear her mask.

Thank you for checking in and praying for us.

Blessings,
Dana

Thursday, February 28, 2008 9:35 AM CST

New photos!

Yesterday was a day unlike others. Karina gets up every morning and gets bathed, dressed, hat in place and shoes on everyday, no matter what. With the exception of 10 days in bone marrow transplant, on morphine for mouth sores, there have not been days of laying in the bed until 1 pm.

Karina felt awful yesterday and slept off and on until 1 pm. Her fever has hovered at 99 degrees or lower so we are seeing progress in the right direction. We started the new antibiotic yesterday afternoon only to immediately throw it up. It only comes in liquid form which Karina can barely tolerate. We repeated the dose last night and again this morning.

Today, Karina woke at 7 am sharp ready to start the day. I on the other hand did not. The past two weeks of her sickness is catching up with me and I am feeling under the weather today. Karina’s physical therapist is here and she is doing a great job participating without crying, fussing or complaining. God is providing for Karina today the strength she needs. We feel optimistic that she will be healed from the infection that is causing the GVHD to go crazy.

Karina's skin is very tender all over, raw in many places and red as a strawberry. The skin color brings out her beautiful blue eyes and white teeth even more. We are babying her skin with aquaphor and praying for healing. The doctor mentioned bumping up her steroids for five days but Dwight and I feel that it is pointless until we get the infection under control. The GVHD will continue to be activated unless the infection is cleared first.

We continue to be very pleased with our care at Children's and count ourselves "spoiled" in the world of medicine. We consider Karina a miracle from God's healing and a cure from modern medicine. When I was in college studying anatomy, I quickly realized that the world of medicine is quickly gaining on our emotional comprehension. Doctors and scientists are brilliant as well as the diagnostic machines used. We are thankful.

Thank you for praying for Karina. We feel the power of prayer in our lives.

Blessings,
Dana

Tuesday, February 26, 2008 8:55 PM CST

Long day, no fungus! Praise God.
Perfect CT scan. No abnormalities from scalp to hips. That's my girl.
Karina had a good visit with her previous psychologist from transplant days. Hope to make this a weekly meeting. Good stuff.
Good blood counts even after week two of fever.
Fever gone last night and today, but back to 101 this evening. Strange.
Got antibiotic for possible infection that dr. can't pinpoint. We'll take that happily with hopes of killing the fever.
Exhausted this evening, but not enough to tell you that God is working in our lives daily.

I have been reading a book by Anne Graham Lotz (Billy Graham's daughter) simply titled "Why?" It caught my eye on the shelf, no wonder. Through my reading I am learning to put my faith into words a bit better which I think is important to share with you.

As anyone knows who reads this website, my faith lies in Christ, my strength, my hope and my peace regarding Karina's future lies in His hands. He masterfully made Karina and placed her in our family to glorify Him.

Last summer, at some point, I remember praying to God and giving Karina wholly to Him. My heart was broken by her tragic illness and disabilities that I felt more helpless than ever before. That prayer and surrender of my heart meant that I was giving God back what was His anyway. Karina is a gift to our family. Only then have I felt the willingness of my heart to be open to Christ's plan, not my own.

The past two weeks that Karina has been sick, suffering, requiring extra care I have wondered where God was. His silence is not ignoring me, not being too busy to listen, not punishment or unable to answer my prayers but a time for me to grow in Him in trust and faith that is stretching me beyond my comfort zone. I am learning to grow during the silent times, see small signs of His presence by opening my eyes on the dark days.

Thank you for your prayers.

Blessings,
Dana

Saturday, February 23, 2008 9:11 PM CST

Last night Karina's temperature went to 104. She shivered until the bed was shaking like crazy. We were up a few hours as she was sick and miserable. Tylenol brought down the temperature and she rested well. She started off the day feeling pretty bad but managed to ride along for a few errands and then to Omi and Bubba's house for dinner. A real treat to get out.

Please pray for Karina. Dwight and I are feeling more strongly that she may have a fungal infection brewing. This happens when the normal fungus in our body becomes out of control because the steroids and immune suppressive drugs allow it to become off balance. She battled this for four months last year and is on medication to prevent this but the extensive time frame may have invited this battle right on into her body. Viruses like the doctors are thinking sounds pretty good to us right now. But then again, a virus is what caused the neurological damage just one year ago, tomorrow. We are ready to start celebrating great milestones instead of tragedies.

I did call Children's this morning to report Karina's fever. They will have a CT scan of Karina's lungs set up for our Tuesday apt. Seems like forever from now but not much choice. My parents will be up again to help out at the house.

Eleven days with a fever is 11 too many. Please pray that her condition does not become worse and that the doctors can determine what is causing this.

Thank you for praying.

Blessings,
Dana

Thursday, February 21, 2008 8:31 PM CST

Karina had a wonderful day yesterday. My parents came to town and they must have brought the cure. Karina was fever free, in great spirits, participated in therapy and had two hours of school. What a wonderful day for her until dinner time. She had nausea and vomiting through the evening and this morning. The fever returned about mid morning today (102.2). I called Children's and the doctor feels that Karina is fighting a virus, which has been his thought from the beginning.

After a dose of Tylenol this morning, Karina has felt pretty well and has been in good spirits all day. She remains with a low grade fever tonight. We are expecting a pretty significant snow and ice storm tomorrow so I am not sure what the day will hold for us as far as a trip into Children's.

Please pray the fever is gone soon and that God will restore her health. The strangest part of this week is that her hair has all fallen out. She is almost back to chemo bald and is very bothered by this. I am searching for a wig to her likings. Long and blond is her request so that she can use hair clips and bands in it. My hope is to have one for her in the next few days. Between now and then we need to keep her head warm and her spirits up.

Thank you for praying for Karina. We, as a family, are just ready for Karina to be better. There is not a week that goes by that we feel free of doctors or illness. Please pray that her sweet spirit is spared depression or anger after all that she has been through.

Blessings,
Dana

Tuesday, February 19, 2008 3:56 PM CST

Karina's fever returned with a vengence last night. It jumped to 103.3 in the middle of the night and we got concerned. We headed into Children's this morning for our scheduled apt and the doctor ordered a variety of blood tests for viruses and did blood cultures for bacteria in her blood. They are all pending and we will hear in a few days if anything turns positive.

Otherwise, we have had a very long day here at the hospital. Three IV needles to get a vein with blood and a two and a half hour dose of antibodies. The dose is due to finish around 5:30 pm and we will head home for a much needed good nights sleep.

Dwight was kind to take the morning off work to escort us to the hospital, suitcases packed, just in case. He ended up staying most of the day and is now home enjoying the boys. We are grateful for the freedom to leave head home to see the boys ourselves as we know many kids are staying the night. God has provided for all our needs.

Dwight's mom spent the day at the house as she does many days a week lately keeping the laundry going, the boys on schedule and tidying up the house. Tomorrow my parents come for the day. We are forever grateful for their loving help month after month.

Karina seems to be very sleepy but in good spirits generally. I pray that she can be free of the fever and feeling good soon. Thank you for checking in and continuing to pray faithfully.

Karina's blood counts just came back perfect! Praise God.

Our main computer at home has a virus and also our new photos on it, so shortly I will update the photo album.

blessings,
Dana

Sunday, February 17, 2008 8:54 PM CST

God hears our prayers and has answered them today. Karina had a restless night but woke in good spirits with no temperature. She continued to improve through the day in her appearance and mood.

During our "church in the kitchen" this morning we all felt God directing the message to each of us in different ways. We were listening to our favorite pastor as he continued his series on Moses. The question he presented was how we become closer to God as Moses did. The three questions we asked ourselves were; do we believe that we can become close to God, do we want to become closer to God and if so are we willing to suffer for the relationship to deepen. The first example he gave of this closeness was two people going through a trial together was; dealing with a disabled child (to which he has one himself), soldiers driving a tank during a war, a couple caring for an elderly parent etc.......Moses continually faced challenges and he stood on his faith in God. By doing what God told him he was deepening his relationship with him. His trials were not a walk in the park but he was faithful.

This message provided an opportunity for Dwight and I to ask our kids how they think we are/have suffered for the deepening of our relationship with God. Their answers were sincere but not what we expected. Karina does not feel that she is suffering. Dwight and I do as her parents knowing that our child is suffering beyond our control. This is the greatest heartache we have ever known. We did realize that we could answer yes to the three questions from the pastor and our challenge is to find way to glorify God in the suffering.

I off to bed with anticipation of a great Karina day tomorrow! Thank you for your prayers. When I read the thermometer this morning, I felt like there were many of you in church praying at that very minute for Karina's healing.

Blessings,

Dana

Saturday, February 16, 2008 9:56 PM CST

Karina still has a fever. This is the fourth day of low grade fevers and we are concerned. I spoke with the doctor yesterday and he said that she probably has a virus. She has no symptoms of anything else so we are puzzled.

She has not been herself since the fever started and we can't seem to get her out of the funk. Her skin is very itchy which is part of the GVHD and bothersome to her. We got out today and went into DC for a change of scenery. She seemed to enjoy herself but she is just very quiet and feeling poorly. We have a doctor apt on Tuesday and it won't come quick enough for us.

Please lift her up in prayer for healing from the fever and that she returns to her cheerful self. The past few days are painful reminders to Dwight and me of how fragile and sick Karina still is. We so want her to get better if this is God's will.

Blessings,
Dana

Friday, February 15, 2008 8:59 PM CST

Karina woke again today with a fever, but low grade. It was enough to make her feel lousy most of the day. Dwight arrived home early from work for the start of a long and fun weekend. What a treat as he always has the knack for cheering up Karina in the worst of moods. We headed out for a few errands then a wonderful walk in a local park to feed the ducks. She had fun with daddy chasing the ducks with her in her stroller. This was the first smile and laugh we have heard in 3 days. We ordered pizza and settled in for family movie night.

Over the past few days, Karina has been distant, quiet and often unresponsive to our questions. By this evening Dwight and I were getting concerned that her hearing was not working or possibly further neurological damage due to her fever and curious sickness this week.

Finally, after she got in bed, Dwight asked her if she was sad about something. She began to cry. We dug it out of her and she said she misses her friends and wants to go to a show. Weeks seem to go by and the business of doctor visits, therapy and her school teacher fill our time. She has exposure to different things each week but not enough time with friends.

I had to confess that I had an evening of deep sadness for Karina last night. I just could not keep the tears away for her suffering and all she has sacrificed. I kept telling Dwight that all she wants is to be normal and do normal things. Tonight confirmed my deep thoughts for her. I now have a new challenge and that is to make time for more play dates and safe public places. I am also praying for warmer weather to allow her to be outside and not freezing all the time.

Thank you for checking in. Please pray for her fever to stay away, for her skin to heal and for her spirit to be nurtured through friends.

Blessings,
Dana

Wednesday, February 13, 2008 8:53 PM CST

I briefly mentioned that Feb 8th was the three year anniversary of Karina's diagnosis of Leukemia. The day was one that came and went. But, over the weekend I felt the need to remove one constant reminder of Karina's ongoing battle for wellness.

For three years we (Karina and I) have lived with two large suitcases packed, ready to go to the hospital. We lived 165 miles from OU Children's hospital in Oklahoma and when a fever came, Karina was to have blood drawn with in 2 hours. We had to be ready to go and yes, we used these suitcases too often. Living only 25 miles from Children's in DC has been more convenient but required no less use of these suitcases.

I decided that three years was enough. Karina and I went upstairs and unpacked every ounce of stuff in them. They were fully stocked with clothes, hair dryer, shoes, air mattress, books, blanket, stuffed animals, crafts, noise maker, "do not disturb" sign for the door etc........It was a trip down memory lane...............a lane we care to not go down again. It felt good to clean out and put away. The spot in the hallway that the suitcases were parked is bare now. Yea!


Not so fast, Dwight said. This morning Karina woke up and said she felt awful and that she had a fever. She is amazingly accurate about her health. She did have a fever and we headed into Children's for a five hour check up. My in-laws once again jumped to help out. Nothing was determined as far as the source of her fever, so the doctor and I agreed that we would just watch and see. She took one Tylenol and has felt great the rest of the day. Strange. It was nice to not have the routine blood draw, IV antibiotics, oral antibiotics etc.................Her body has seen so much antibiotic that she needs a rest and we all agreed on that today. She has no symptoms of illness. We pray that it was just a fever passing by.

I have posted new photos.

Thank you for praying and believing in Karina's healing. We do!

Blessing,

Dana

Tuesday, February 12, 2008 8:42 PM CST

We got a call early Monday morning from NIH. It was the dermatology office and they asked to see Karina this morning. We had a great appointment today and the doctor was pleased with her skin. He is working on a medical journal chapter on the effects of voriconazole, an antifungal drug, and its sun sensitivity to long term users. Karina was on this drug for 10 months and taken off last August when this doctor saw her feeling certain that she had sun sensitivity.

Her skin is not "good" right now as it is healing from the sinus infection. He would like to photograph her when we get back to normal looking skin. I learned much about other aspects of her skin and the long term effects of steroid creams, scars, thinning etc........Those are things we can work with or pay to have fixed down the road. For now, we are grateful to have Karina.

Karina is losing fingernails. They look terrible and have changed in the last few weeks from being perfect. The doctor took a sample to check for fungus. You were right, Nicole!

Karina still remains in good spirits, just tired most of the time. The best days for Karina are days that we get out of the house. It is very cold here right now and Karina and cold weather don’t get along. We look forward to spring and outside play dates.

We had an ice storm this evening. It took Dwight two hours to get home from his 17 mile commute from the Pentagon. The kids and I had a great movie night eating crab cakes in our warm house. We have much to be thankful for.


Thank you for praying for Karina. We appreciate you checking in. I always desire to personally email those who sign the guest book. There just are not enough hours in the day. Feel free to email me directly: ddsones@cox.net.

Blessings,
Dana

Sunday, February 10, 2008 8:38 PM CST

Karina had a wonderful weekend. She seems fully healed from her cold/sinus infection and her skin is recovering nicely. As we look back over the past 5 weeks that she was sick, we saw that the effects on her blood counts and skin had a delayed effect. What a huge undertaking this infection was on her body. Once more, we are reminded how important it is to keep her healthy. Tough job in the dead of winter with a girl that has lived like a hermit for a year and five months. Maybe her mom is more tired of it that she is :).

We are all ready for spring weather and baseball around the Sones house. Karina's forever cold body will welcome warmer temperatures and outside activities.

This weekend we had a touch of warmer weather which allowed us to get out. We headed straight for DC which holds endless possibilities for adventure. We went to the Jefferson Memorial. The photo opportunities were great as DC is the most beautiful city I have ever seen. The elevator was out of service so we thought we would not attempt the hike to the dome. Karina let us know that she wanted to get out of the stroller and head up the stairs. As always, she needs help with her balance but made it up the 36 stairs without any problem. Karina still has poor balance and needs help to stand and walk, but her energy and enthusiasm is increasing and we are so happy to see this.

No other earth shattering news to report. We had church in our kitchen this morning which we often do followed by question and answer time. :) No, Dwight's is not the preacher. This morning’s sermon was on Moses and the Israelites. The bottom line was waiting on the Lord for his perfect timing. The truths of this story were pointing right at us. Wait is what we shall continue to do and while we wait on God's plan for Karina's life we will be content with today.

Thank you for checking in. I will post new photos in a day or two.

Blessings,
Dana

Wednesday, February 6, 2008 8:50 PM CST

The MRI results came back unchanged. Karina's doctor, a bone marrow transplant specialist, went down to radiology to see if they saw the improvement in the scan that he saw. This is going to bat for Karina to which the radiology department said, no, there really are no changes.

Dwight and I feel completely neutral about these results. They really don't mean anything in God's eyes. He apparently has something else in store for Karina because she had another wonderful day today. She made the trip out to the backyard to swing. All the neighborhood kids were out in our yard and I politely asked them to have fun but stay away from my girl. :) She had a wonderful time watching them play. She got cold and we came in. She has remained in good spirits for two days and I pray that this is not a passing mood but one that lasts for many years to come.

I have about 50 more photos just like the ones in the photo album. I must have snapped one a minute but could not help myself seeing Karina so very happy...........and being herself.

We are rejoicing with Karina's continued improvement, sweet spirit and neurological healing. God is in control, he is providing the strength for each of us daily and we feel his presence in our lives. We also feel your prayers.

Blessings,
Dana

Tuesday, February 5, 2008 9:05 PM CST

I am too tired to write but too excited not to. Karina started the day with a "fit" getting up and to the car early. Once on the road the fun music and conversation cheered us both up. We arrive at MRI on time only to wait 2 hours and 45 minutes for her to get to the sedation area. Dwight met us there from work and she loved seeing him. He prefers to step to the waiting room for the last part before we say goodbye to her. The mask went on and she quickly went to sleep. Seeing her lying there so lifelessly was a mental picture that I don't want to remember. It looked too close to death.

Dwight and I went to eat a quick lunch. (What a treat for us) Karina woke up very quickly after the sedation with minimal agitation. Usually, she is very confused and angry. Not this time, by God's grace. She was freezing cold but pleasant. She dozed off and on for an hour and we left.

Her blood counts came back outstanding. Her hemoglobin rose on its own from 7.8 to 10.2 and her platelets were at an all time high.245,000. Normal range for many other levels that were drawn and we were thrilled.

No news on the MRI results at this point. I will post in another day or two.

The best news is not really any of this but what happened when we arrived home.

The boys were outside on this unseasonably warm day playing ball with my dad. Kairna asked to go outside to swing. She has only been outside on the swing once and to sit and watch the boys play a few times in the past year. Too hot, too cold or too tired are the reasons. Not today. She walked outside, around the house to the swing and made it go by herself. See the new photos. She used the metal detector to find coins my dad hid for her, went to the picnic table to have a snack, back to the swing, back up the steep hill to the house for a bathroom break, back down the hill for more swinging.............etc.you get the picture. She laughed and smiled until we all were crying with joy. We saw a Karina that we have not seen since the virus hit Feb 24, 2007. God is so good! He gave Karina this magical day. We are rejoicing in the progress we saw today. Tomorrow should be warm again then a cold front moves in. We are going to make the most of tomorrow.

Thank you for checking in. See the new photos.

Blessings,
Dana

Sunday, February 3, 2008 10:01 PM CST

Just adding new photos. Karina had a good weekend. Pick a mood, any mood was the theme of our weekend. The steroids seem to play a large factor in her personality on the opposite day from the dose given. Hum??????????? Nothing we can't deal with. It is all normal and overall Karina is so pleasant and we are loving these days of healing.

Thanks for checking in. Please pray for Tuesday's MRI. The sedation seems to take its toll on her and I pray its effects are short.

Blessings,

Dana

Thursday, January 31, 2008 9:24 PM CST

Yesterday Karina's doctor called which used to make my stomach flip. There is little that would shock me these days. He reported that Karina's hemoglobin dropped to a very low level. We are to watch for signs of anemia. Pale skin............hum???? How do we do that when her GVHD shows red skin all the time? Low energy.............hum??? A daily symptom for Karina.

Well, not today. Karina's energy was so good. She has made some amazing progress very recently. I mentioned the other day that she is writing her own math problems. I got her a diary and have encouraged writing a few sentences about her day. She is improving her handwriting daily. She has stood without effort (with supervision of me)to mess around with her jewelry today, stood at her bed to empty her piggy bank, cooperated with physical therapy etc........she still walks short distances and needs hands on support but we are making strides in the right direction. We feel so encouraged today.

Feb 8 will be the three year anniversary of Karina's leukemia diagnosis. I used to count the months until completion of chemo and Karina being restored to health and returning to normal living for all of us. After her relapse those thoughts quickly changed to prayers for Karina's survival. I have always felt that at this three year point we would know a lot about Karina's future. I do know that she is cancer free and recovering slowly but consistently.

I have to mention the first friend to sign this guest book nearly three years ago. Her name is Wendy Glosser. Her husband is a boom operator on the KC-135 and was a member of Dwight's squadron in Altus, OK. At the time I knew Wendy enough to tell you that she home schooled her two teenage boys and was a full time nursing student working part time at the local hospital. I have since gotten to know her on a much deeper level. She is a woman of passion for those suffering, a prayer warrior on her knees daily and a faithful friend. I have always wanted to thank Wendy for being the first to sign this guestbook so, thank you friend.

My heart is as bright as the sunshine today as Karina is showing signs of herself. I am cautious to say like her old self because God has created her into a different person. We love and cherish who she is today and are excited for tomorrow.

Blessing,

Dana

Tuesday, January 29, 2008 9:09 PM CST

Our family had a wonderful weekend at my parents in Williamsburg. The boys had a four day weekend so we headed south for a "change of scenery". Karina has been battling a sinus infection for about 3 weeks and the late effects of her GVHD set in just as we arrived at my parents. Her legs became very red, swollen, warm to the touch and itchy. We felt a bit alarmed to see she had a slight fever on Sat am. She seemed to perk up and snap out as the day went on. We ended up having a great weekend.

Karina had a good day today. She woke in a very pleasant mood as we headed to the hospital for her check up and blood work. The doctor was more concerned with her swollen legs than the GVHD. He thought she looked pretty good compared to my description from the weekend. This is our first experience with Karina having a cold and the late effects of GVHD. We decided to hold off on the steroid taper until next week to let her body heal.

Next Tuesday Karina has another MRI. I don't want to see her sedated yet another time but we are approaching the one year mark of her debilitating virus. We are praying for decreased inflammation in her brain. She continues to improve slowly in her mental and physical abilities. That is really all that matters to us. An MRI is purely for documentation.

Next week marks Karina's three year anniversary of her diagnosis with leukemia. I will be out of town at a women’s conference praising God for the girl whose life He spared. This would have marked her completion of chemo and the chapter of cancer would be closed. God chose differently. Daily we make a conscious decision to see the blessings of our lives now and not what would have been, could have been or what we imagined. This is easy to type but very hard to live. Anytime we leave town and return home the reality of Karina's illness hits me hard. Just as I feel sad, God places someone in my path to encourage me. He has done this over and over again. Thank you dear friends for the personal emails that remind me of who I am.

Dwight and I have noticed the waves of ups and downs we each have. When I am down, Dwight is up and vice versa. I am so thankful for Dwight's energy to help me around the house, get groceries and take care of Karina. I pray that when he is down, I am up. That is what marriage is all about.

God is refining us through this fire and we know for our good. We will not ask why but trust that God has this in His plan for our lives.

Blessings,
Dana

Tuesday, January 22, 2008 2:24 PM CST

Karina seems to be back to normal after 4 days of feeling pretty bad. She is suffering from itchiness on her skin because the GVHD is activated after having an infection. Her new immune system is getting comfortable in her body but very slowly. I actually see these illnesses as a test to her immune system and it is encouraging that she did not get sicker or have a major flair of her skin.

She is a bit red and her skin is peeling as we expected but not out of control. We are to reduce her steroid dose again on Thursday. Please pray that her body tolerates the change in dosage.

I have posted new photos. I have written several times about my dear friend Nancy who graduated from occupational therapy school a year ahead of me in Arkansas many years ago. She has faithfully come every Friday to do OT with Karina for two hours for many months now. I cherish her friendship, passion for OT and desire for Karina to have a better quality of life. Kairna enjoys this time so much and I do too as our friendship grows along with Karina. There is so much joy to be shared watching Karina heal and Nancy is cheering right along side our family every week.
Thank you Nancy! See her picture!

Thank you for checking in.

Blessings,
Dana

Friday, January 18, 2008 2:53 PM CST

Karina is feeling much better. Her temperature came down to 100.0 today which is not of concern for the doctor. We made our trip into children's today for antibiotics and all went well. We are encouraged to see Karina's skin holding steady even though her "new" immune system is worked up with the infection. We actually made it home for the bus to greet the boys. Tonight is movie night at our house and we are rejoicing for restored health to enjoy each other fully tonight.

Have a great holiday weekend.

Blessings,
Dana

Thursday, January 17, 2008 8:17 PM CST

Well. Karina began not feeling well yesterday afternoon rightfully so after the medicine she received on Tuesday. She woke up today feeling lousy and after a 45 minute Spa Morning benefits of mommy she asked me to take her temperature. Sure enough my perceptive daughter knew that she was sick. 100.7 the first time and 45 minutes later it was up to 103.7. I am not sure she has ever had a fever that high. Her physical therapist was here and if she can't get Karina to participate then no one can. I called the physicians assistant and she told us to come into Children's immediately.

Thank goodness my mother in law was here this morning for another reason. She jumped on board as she always does and took Braydin to the orthodontist while my father in law came to the house to see Torin off the bus.

Karina got an IV in for blood cultures then an infusion of broad spectrum antibiotics. We will go in tomorrow for another dose as well. As long as she does not develop an infection in her blood from the cultures we will be back on track by Saturday.

She seems to be feeling much better tonight. When days like today come upon us by complete surprise, I feel a sense of calm and security knowing that God is in control and each of you are praying for Karina on healthy days as well as sick days. Thank you.

Please pray that Karina's nausea and throw up goes away. Dwight and I feel that she (and us) are dealing with the healing process pretty well but we break inside when we see her suffering. She has suffered enough for a lifetime.

Where did the fever come from today? Probably from receiving a flu vaccine on Tuesday especially with having a cold. Mistake, maybe. Fixable, yes. Praise God.

Blessings,
Dana

Wednesday, January 16, 2008 10:39 AM CST

I had a wonderful relaxing 48 hours with my dear friends, Heidi and Lorraine, this weekend in Ohio. The weather was cold and blustery but the fellowship and friendship so warm! I am grateful for the time away and for my parents and Dwight who worked hard to keep the house and kids running. I came home to everyone happy!

Karina continues to fight a cold, her first since transplant that has gotten worse and lingered for too long. Yesterday we spent the day at Children's and they did recommend an antibiotic to see if it is bacterial. If that does not do the job then we will just wait. Karina received an infusion of antibodies that takes about 3 hours. Then another needle stick to recheck her potassium that showed dangerously high with her earlier blood draw. It came back within normal limits the second time around but we are able to ditch another two pills a day as we see if she holds her own over the next few weeks.

She then got a flu shot. Oops by the doctor for not telling us about this but the rest of us and grandparents have all had one so no harm done. Then as if she had not had enough, she had an hour breathing treatment of pentamidine to protect her lungs from pneumonia. We headed for home around 5:45pm completely tired.

When we arrived at the parking garage yesterday, Karina said, "I don't want to go in." Never has she said that but I encouraged her by saying that I did not either. We decided we needed to pray about our attitude, fears, fatigue and ask God to open the door for us to show that we are Christians and encourage others this day. Karina went in and did just that! She has been through more than I care to remember. Where does she get her strength? There is no doubt that it is from our Heavenly Father. No seven year old could walk in her shoes.

I am starting to research rehab options for Karina for last spring time. My heart feels a great burden for her to receive more intense therapy on sight, but not over night. She deserves this; she wants this and needs this to further her recovery. The doctor and therapist agree.

My heart remains burdened by her lack of social opportunities to be a child, be with friends and enjoy life. I have to work on this but somehow keep her healthy at the same time.

Karina's blood counts were very good yesterday. Her white count was up which tells us she is fighting something. All other numbers were beautiful. The doctor did lower her steroids again this week to 15mg once every other day. Next week we do not go into Children’s' but he said to lower again to 10mg if her skin remains unchanged. Then comes the tricky part. To get her off steroids completely this requires her body to learn to make them on its own. We will go slow and watch carefully through this process. We are encouraged and so is Karina.

Karina's weight has stabilized to her pre-transplant weight. Her appetite is good and her diet balanced to keep her blood sugar under control without insulin.

The boys are doing well and anticipating baseball season. Braydin is in a baseball clinic once a week and after school science. Torin is enjoying kindergarten and starting to read simple books. They continue to love Karina. Torin still asks a lot of questions about when she will get better, why did she get sick, I liked her better before she got sick, I can't understand her when she cries all the time and can God kiss us when we get to heaven. He is a thinker and the child who challenges my college degree daily.

Our lives are blessed and we give God the glory for his provisions in healing Karina.

Thank you for walking our journey in faith with us. Your words inspire and encourage us more than we can express. Our prayer is that your faith and prayer life are growing with ours.

Blessings,
Dana






Dwight changed the photos over the weekend so you can check those out.

Thursday, January 10, 2008 7:41 AM CST

I HAD THE DREAM!

Over the past few months, 3 people have called to tell me that they had a vivid dream about Karina. All three of these people have had the same vision in their dream. The dreams were amazingly clear, realistically possible and hopefully encouraging. Their dreams saw Karina walking all by herself.

Last night was my night! My father in law and I took the kids to the Verizon Center in DC to see the Washington Capitals take on the Colorado Avalanche in ice hockey. We came home late and slept very tight after our fun evening. Dwight slept with Karina which allowed me a full, uninterrupted night’s sleep. My dream was so real that Karina was walking by herself. Dwight and I will never lose our dream/desire/goal/hope or faith that she will one day walk on her own.

We see daily improvements in her desire to talk with more energy and lung capacity. She is interacting with us in conversation willingly frequently making jokes and speaking up with her desires. We love what is happening with Karina as slow or fast as it is, we see continual improvements and that is the direction we want to head. She will have another MRI the beginning of Feb but changed or unchanged will not make much difference to us as Karina remains in God's healing hands and almighty power.

I will close for now. I am treating myself to 48 hours in Dayton, OH visiting to very special girl friends. I will leave tomorrow morning and will be back in touch early next week to update you. Maybe pray for my mom, dad and Dwight as they hold down the fort this weekend.

Blessings,
Dana

Saturday, January 5, 2008 8:23 PM CST

My grandma (mema) would tell me I am slipping up! Dwight would tell me I am reneging on my duties! Karina would tell me, bad mommy! Braydin would say, oh it doesn't matter! Torin would say you are just too busy! Mom Sones would say, people understand! Dad Sones would say you will get to it when you get to it! My mom would say this too shall pass! My dad would say, don't you worry! Thank goodness none of these people that I love say these things to me when I am very tardy on updating the website!

Karina is doing well. She had her weekly apt on Thursday because of the New Year and it was painless. Her blood counts are holding steady with just slight drops. No worries and we are thankful for steadiness in her life and ours. She had a couple of days of stuffy nose and her skin is a bit red and bothered but nothing we have not seen before. We did reduce the steroids again after a month of holding still. She is down to 20 mg once every other day. Praise God. Our goal is to keep her healthy through this season of much illness.

Karina is down to her pretransplant weight which we are all so happy to see. We do want her to hold around this to make us all feel secure. I come from Italian genes and a little meat on the bones is a sign of good health! Right? With this weight loss, we do see the tremendous atrophy in her leg muscles. This should regain over time with exercise.

Yesterday Karina had neurology apt. It went very well as her doctor is a smart and precious lady that genuinely gets excited to see Karina's improvements. Her findings were: greater strength all over, better trunk control, smoother head movements, more expressions/animation, no more high stepping with the left leg, no improvement in the tremors throughout her body but less tremor in her hands. We were pleased. She is requesting another MRI around the end of January. We would be content to see stable and elated to see improvement. She is in God's hands.

My parents were here from Thursday to Sat and I am always so grateful for their help with errands, cleaning and making time for me a break. My in laws do just the same of the opposite week. We are so blessed. We are bumming about our Redsin's loss tonight to the Seahawks. It seems the boys hardly took off their jerseys this week with hopes for a win tonight.

I leave you with this verse:
Philippians 4:6-8
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally , brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable if anything is excellent or praiseworthy think about such things."

Blessings,
Dana

Sunday, December 30, 2007 9:36 PM CST

As 2007 comes to an end, my mind easily wanders back to a year of change for our family. Each of you reading knows where Karina has been, what our family has endured, the devastating disabilities and the sovereign God that has carried us through. Instead of reliving the past year I want to tell you a bit about whom I live with.

Dwight quietly graduated in June and has maintained a position at the Pentagon performing daily at his best. Those of you who have worked with or for Dwight in his 19 years in the Air Force would agree with me on a few characteristics that he possesses. Dwight is a man of loyalty, honesty, integrity, character and wisdom. That is the Dwight that many see and know very well. What no one sees is the man of action at home. Dwight has worked diligently around the house doing anything from laundry to dishes to changing messy pull up diapers in the middle of the night...........not once or twice a night but often three or four. If there is a spare minute in the day Dwight is out with the boys throwing the baseball, shooting the bow and arrow or teaching them a skill. Dwight seems to selflessly care for all of our needs, putting his to the side. When my patience has run out or my energy is on empty, Dwight picks up where I can no longer function. There is a relationship between Karina and her daddy that speaks no words. Dwight can spend endless time caring for Karina, gently cleaning her ears, applying special lotions to her face with Q-tips, carrying her anywhere she wants, protecting her like a pappa bear, making her smile when no one else can (the rest of us included), getting her ready for bed every night, reading Disney Princess books night after night and sleeping with her which is no slumber party. There is a piece of daddy's heart that will be broken forever, an anger that screams "this is not fair to my little girl" but another piece of daddy's heart that is not broken but cheering for his girl to fight, learn more, work hard and live strong!

I have often said too many of you that I don't know where Karina gets her toughness, courage, strength, optimism, hope and passion for winning. Directly from her daddy I now know. God lives in Karina's heart and I know this because she is too young and not mature enough to know to pray for these things herself. This is a daily reminder that God is providing for Karina without her even asking. His words are true.

Happy New Year.

Blessings,
Dana

Friday, December 28, 2007 9:37 PM CST

Karina's apt went well yesterday. The doctor did not see any signs of an ear infection. He did prescribe ear drops, which Karina can't stand, twice a day for ten days. Wish me luck! She has had no more fever and seems to be just fine.

We got out of the apt just in time. Our family went to the Nutcracker Ballet put on by a local company. This is the first thing our family has done together in public in 16 months. We went to a small auditorium that had handicapped seats down front. Karina wore her mask and was not close to anyone else. We had a wonderful time and she was thrilled. It had to be bitter sweet for her as she was a beautiful ballerina before her virus. It was a time to reminisce but not for too long. We have to look forward and not back at what once was. We know that Karina is alive because of a generous donor and we now live for tomorrow.

After our show we went to Dwight's parents for dinner to celebrate Bubba's birthday! It was a great day.

See new photos!

Blessings,
Dana

Wednesday, December 26, 2007 9:23 PM CST

I almost forgot my password to get onto this site! We went to Williamsburg for 4 days! Really, I was finished with my shopping long ago! It has been over a week and I know many of you have been doing what I have been doing.................celebrating the birth of Christ. I have been so focused on capturing the meaning, telling the kids, reading to the kids and making sure they felt the same passion for this wonderful occasion that I avoided the computer like the plague. Thank you to those who emailed me wondering if Karina was still doing well.

Karina is doing okay. Our last apt on Tuesday of last week went well but too long. We left at 9 am and got home at 7:15pm. She received an infusion of antibodies. Her skin was fire red and of concern but it seems to have resolved on its own. Praise God. I feel the power of your prayers each time this happens which is quite often. I frequently pray with Karina that we give God all the glory and praise for her healing. I also tell her often that there are so many friends praying for her. Friends that she has never met but who love her just the same and enough to faithfully pray for her. She knows but has no idea just how powerful prayer is and just how special each of you is to our family. Many of you we know, and many we do not but hope to one day meet.

Karina had a wonderful Christmas. She has been feeling well and full of conversation, excellent posture, interaction with others, energy and smiles. Last night she developed a low grade fever which lasted until this morning. The change in her personality from yesterday to today was startling. The fever seems to be gone. Now, I am not a doctor but my motherly instinct is to say that she has ear infections. All the classic symptoms, but no pain thankfully. My kids have not had many ear infections so I am no pro but I did call the doctor today and will take her in early tomorrow morning.

A few days ago I purchased tickets for Karina and the boys and I to attend the Nutcracker Ballet performed by the Virginia Ballet. It is not far from home and I got handicapped accessible seats on the ground floor. My plan is to sneak her in at the last minute with her mask on and leave as the curtain falls. She has not been in a public place like this since her transplant. It is a tradition I have been trying to keep alive as the kids get to see a new version each year and in many different states. Anyway, it may or may not work because of the doctor apt. I am praying she stays fever free, we get some ear drops and antibiotic and blast from Children's headed for the show.

We had 4 wonderful days in Williamsburg and arrived home on Christmas Eve. The kids had a wonderful day and were able to spend it with both sets of grandparents as well as great grandparents. We were exhausted by the end of the day, blessed beyond measure and happy to see our pillows.

As last night came to an end, Karina with a fever, the reality of her fragileness became acute. Our focus remains on Karina, keeping her healthy, germ free and happy. And we wonder why we are tired? All kidding aside. We are blessed to have this precious child to love and care for.

I have a mind full of thoughts regarding her, where we have been and where God may lead us. For now, it is late and I will close. Thank you for your faithfulness even when I am not. I hope that each of you had a precious time of celebration with your families yesterday. I am quickly reminded of those who did not. Many troops serving in the military over seas, those with cancer and illnesses lying in a hospital bed and those separated from loved ones. They are in the Sones prayers.

Blessings,
Dana

Monday, December 17, 2007 8:52 PM CST

I posted new photos. Karina had a fine weekend. We drove through historic Bull Run Park to see the Christmas lights and Karina loved that. She seems to be feeling about like normal but has been a bit touchy and moody. We are not sure why but the household is dealing with it. My mom always says she loves to see Karina with moods/frustration/anger/sassiness etc..........because it reminds her that the old Karina is in there. I think I need to call my mom to come visit for a few days. :) Just kidding.

We head to Children's tomorrow for a long day. We will wait for blood work to see if Karina needs a dose of antibodies and if so we will be in for a long day. Karina's skin has been very dry, red and pealing. These are signs of GVHD healing. We pray for good blood work tomorrow.

This is a busy and fun week for the boys with holiday parties and fun. Maybe Karina is mad about all the fun going on without her. I don't know. She got out today for a quick errand and had a good time. She has not been making her best effort with her school work and that bothers me. Maybe it is just an off week for her.

Our household is ready for the celebration of Christ birth. The gifts are wrapped and the shopping done, the cards are in the mail and now we celebrate. We pray that your family is doing the same.

We cherish each journal entry. It lifts our spirits, gives us encouragement, and provides hope and love through your words and prayers. Thank you for taking the time to write. I have such a desire to email each of you back as I miss the communication terribly either in person or by phone. One day.

Blessings,
Dana

Wednesday, December 12, 2007 9:06 PM CST

The days are flying by as we are attempting to normalize our house hold around the most precious time of year. We are completely enjoying the preparations for the celebration of Jesus birth and somehow managing to not get into frenzy.

Karina had a rough weekend (throw up all night) which means I did too. When I write the reality of our lives, I reread it and wonder how many of you are thinking I am complaining. Please know that the major and minor inconveniences of Karina's disabilities, her care and our adapted lifestyle are a 100% honor to deal with. The challenges we face and uncertain future are all in God's perfect will for our lives with no detail overlooked. HE is revealing himself to us daily. Many mornings Karina and I arrive at the edge of her bed attempting to begin a new day. She is usually fussing and I am often exhausted from a poor night's sleep. We have the discussion over and over about making a conscious choice to be happy. We "get over it" and press on with hearts open to God's blessings. Let me tell you, He delivers!


Yesterday, Karina's doctor apt went very well. Her blood counts are headed toward the normal range. Her hemoglobin is 9.9 and rising beautifully on its own. Her platelets are normal just like yours and mine! The doctor is extremely happy with these numbers. Karina has lost a few more pounds and we are now seeing baggy pants and are going to be out shopping for new ones soon. This is so exciting for all of us not only because she looks so much more like her self but she feels better having more energy with fewer pounds to haul around.

She received a breathing treatment to protect her lungs from pneumonia which is a monthly routine. Her blood sugar levels are very good. She is only needing insulin 2-3 times per week vs. four times a day just a couple of weeks ago. Please be in prayer about her blood pressure. It is still very high and we have not been able to lower any of those medications yet.

I told you I would have Karina post an entry and we are working on that for you. She is coming out of a mental "fog" that she has been in since March. The medicine reduction is allowing her to think clearly. She makes jokes, acts silly with her brothers and initiates conversation.

Karina's skin was very angry last week after the reduction of medications but seems to have recovered on its own. We see this pattern with medication changes then her immune system gets used to it and heals on its own. Her skin looks and feels very good.

I always ask the doctor if he has any concerns regarding her blood work, relapse etc..........he said that we must continue to live in isolation through the spring to keep her healthy. If she gets sick then we see the GVHD flair and we are set back months to get it back under control. We are seeing so much healing in Karina that we are ready to kick up our heels. But we can't!

Karina's therapists have been sick and have not come and we appreciate this so much. She can't get sick! Torin had a touch of pneumonia last week and finished antibiotics and is fine now. We made our house the great divide keeping them apart.

Thank you for praying for us. I will post again soon with Karina’s view on her story! She may not agree with me!

Blessings,

Dana

Wednesday, December 5, 2007 8:25 PM CST

Yesterday's apt at Children’s was a good one. Karina's platelets have risen to an all time high, close to the normal range. This is a wonderful sign that the GVHD is systemically inactive in her body. Somewhat, I should say as her skin still is red and rashy in areas. Her hemoglobin is rising steadily at 9.4. The have eliminated one of the three immune suppressive drugs completely and she lost 4 more pounds. We were thrilled with all of these reports. The visit went smoothly.

I have posted new photos! This weekend we were treated to our first family event in over a year. We simply have not had Karina in public places let along a Christmas party. Walter Reed's pediatric hematology/oncology unit has its annual Christmas party at Andrews AFB each year. The services squadron has hosted this event for the past 20 years and what an event it was. Karina was beside herself with joy. It was held in an airplane hanger (huge and plenty of room to keep her away from others) and so much fun. There were lots of things to see and do with performances by local dance and theater groups. They served an entire Thanksgiving meal which was delicious. Santa and Mrs. Clause flew in on a jet and taxied up to the hanger. The red carpet was out and in they came. The photo posted is of Karina's expression. Karina and the boys each received two beautiful gifts. The day was magical and a real treat.

Please check in again in the next day or two for a posting on this sight from Karina!

Tomorrow morning Saint Nicholas comes to our house so the kids each have a shoe outside their door. In the morning, they will have a present waiting in their shoe. They can hardly sleep tonight with excitement.

Karina's sleep pattern has been very rough for the past few weeks, but especially bad since the weekend. I am not sure why but I am physically exhausted so she must be as well. Dwight kindly left me a note this morning reminding me that we are blessed to have a beautiful daughter to wake us up 5 or 6 times a night. That helps me mentally just not physically. Thank you for praying for our family as we need strength in many ways.

Karina is doing better in many ways. I say that the fog is clearing.................in her brain. She is more alert, engaging, talkative, pleasant, funny and doing better on her school work. All good sighs of healing.

Blessings,
Dana

Friday, November 30, 2007 8:03 AM CST

As Thanksgiving season remains in our hearts this time of year I am reminded of someone I am thankful for year round. I don't often speak of anyone other than Karina, myself or a playmate on this journal. But, after a note and conversation with my sister I felt compelled to share with you the special bond we share.

Debbie is a year and a half older than I and has been a close friend since our childhood. We have always enjoyed talks about how different we are in personality, taste, style but just the same in faith, morals, values and goals. Recently, we discovered that we are now sharing a new experience. We both have children with disabilities.

Connor is Debbie's oldest child. Before he turned 2 he began suffering from a seizure disorder and continued to display developmental delays. He is now 13 and a precious boy who loves trucks, Barney and being with family. He smiles often, is very curious about things that he does not understand. He is nearly as tall as Debbie but unable to relate to others his age. Through all the struggles of doctor visits, medications, diet changes, therapy and special schooling Debbie and her husband have faithfully accepted God's plan for Connor. She never complains about the inconveniences of a child with disabilities, the stares from others, and the disappointment of having a child that will not do everything that they thought he would do etc..................

Debbie was teaching me long before Dwight and I ever had children what it is to accept God's plan gracefully. I easily accepted Connor's disabilities over the years without question. But, when Karina became disabled, I needed to accept as graciously as Debbie has all these years.

Never did she or I think that God would give us both children with special needs but when he did He tightened the bond that we share. Thank you to Debbie and Chris for the example you have set for us all these years.

If you know my sister, Debbie, you know she is a faithful servant walking everyday in hope, grace and love. She and I may never be on a stage professing our faith but I know now that our daily lives of living for Christ are where God wants us.

Blessings,
Dana

Tuesday, November 27, 2007 9:02 PM CST

Today was a good day for Karina. We made our weekly trek into Children's. The doctor is further reducing one of the immune suppressive drugs she has been on since April. The conversation between the chief of bone marrow transplant and Karina's neurologist a few weeks ago was impactful reinforcing the importance for her to get off some of the drugs she is on to allow her brain to begin healing. The neurologist feels that the inflammation in her cerebellum will not have the ability to heal until she has an active immune system. Only then we will learn the long term deficits/healing potential. Please pray that her body reacts positively to the reduction of medication and we begin to see God's full potential for her healing.

We want only what God wants for her. Over the past several months I have released my desire for Karina's life and started to seek what God has in store for her life. I am learning each day to make a choice to accept the present and look forward to tomorrow. This has allowed me to see the joy in each day.

Karina has surprised us lately with actions and memory. We were all stumped with the name of a neighborhood dog from OK that frequently escaped his yard. Everyone knew this gentle giant of a dog but we could not remember his name. Karina immediately chimed in, "GUS". Floored us all!

She was not happy the other morning because I filled the tub too full. So after she was in, she said to me that I had put too much water in and proceeded to take her hand and an large amount of water and splashed me and the floor. This is the Karina that we knew before the virus attacked. We love to see this spunk return.

Karina's blood counts were okay today. Her hemoglobin was holding steady at 8.4 like last week. Also, she lost 4 pounds. Must be nice!

We appreciate you checking in with us. Please know that we cherish each prayer you send to heaven for Karina and our family. Thank you for the wonderful guestbook entries that fill us with hope, encouragement, memories, friendship, love and courage. I wish I could write or call each one of you to thank you, catch up on your lives and just hear your familiar voices. I miss you all and LOVE to read your messages.

Blessings,

Dana

Sunday, November 25, 2007 1:51 PM CST

Happy Thanksgiving weekend to you all. We have had a festive weekend as a family eating lots of seafood and putting up the Christmas tree.

Karina has totally enjoyed the relaxing time with the boys and helping decorate the house. Unfortunately, she stills has daily nausea and vomiting and low back pain in the morning. We head to Children's on Tuesday morning and will report her discomforts to them.

Karina’s skin has had a few different personalities this weekend. It cleared very nicely and now looks a bit angry again but not as bad as last week. The doctors will be pleased overall, I think.

We are seeing some feisty moves from Karina. We love to see her personality shine through the pain, disabilities and frustrations.


Thank you for checking in.

Blessings,
Dana

Tuesday, November 20, 2007 8:29 PM CST

See new photos!

Today was another long day at Children's. I am fooling myself to think we can whip in and whip out of there. I must be totally optimistic or a slow learner after 14 months of doing this. We did enjoy our day more because of the beautiful new surroundings! The new unit is AWESOME!


Karina's hemoglobin was holding steady at 8.4 which we are very please about. Her other blood numbers were just fine which is always a good sign that her liver and kidneys are tolerating the high doses of medications.

The doctors further reduced both of her immune suppressive drugs. Surprised and pleased! Her steroid level will stay put for the next several months.

Karina's skin is angry! She is filled with rash and redness on most of her body as the doctors predicted since reducing medications rather quickly. They are trying their best to keep the oral medications to a minimum (after speaking with her neurologist last week) to treat this but instead try topical treatments.

Karina tolerated the day very well but melted by this evening. She received Tylenol and benadryl and an IV dose of steroids before the 3 hours of antibodies. I would feel totally sick but she denies feeling bad. When we got home, she was very fussy and on top of everything else the GVHD skin is very itchy. She is so tough!

The team of bone marrow doctors all came to see her today. Really an amazing group of doctors that truly care. Even Dr. Kamani came by. She can be feeling so totally awful and he can always make her smile. She loves him and he will be a happy man to see her walk into the clinic one day.

This past week we have tried a new ointment for her face and it has worked so we are going to try it all over her body and pray for the same results.

Tomorrow our precious babysitter, Renee, comes and the boys are popping excited. They actually asked if they could stay home from school for the day. They think she is worth celebrating just as much as Thanksgiving! I do too but I said "no," go to school.

I think I forgot to mention that Torin learned to ride his bike on two wheels last weekend. See photo.

We are celebrating Thanksgiving here with my parents, grandparents, sister and her family. We will be eating seafood like the Indian's instead of turkey like the Pilgrim's. This is our second annual seafood fest and the kids are so excited. Dwight on the other hand will spend a part of the day cracking king crab legs for three hungry kids. I claimed the TV clicker for the Macy's Thanksgiving Day parade.

We wish you and your families a blessed Thanksgiving. Our family has much to be thankful for this year and each of you is a part of our thankful spirit.

Dana

Monday, November 19, 2007 9:01 PM CST

Karina had a pretty tough weekend. She has had morning nausea, severe low back pain and very fatigued. Her skin is hateful these days and has not remained clear through the last steroid reduction. The doctor will not be happy about it when he sees it but hopefully he will leave things alone and see if it clears on its own.

Tomorrow we head into Children's and will see the new unit that just opened. We are kind of excited about seeing it. Karina will receive an infusion of antibodies at the hospital which will take about 3 hours. We pray that she does not also need a blood transfusion as this will add another 3 hours of infusion time. I can't imagine how she would feel after all of that.

Thank you for praying so faithfully for Karina. Today I felt like the prayer warriors in her life were all on their knees at the same time lifting her up. She woke with the same back pain but it resolved on its own quickly. Then later she put up a good fight with occupational therapy but got a lot of work done anyway. Immediately following she had school for an hour and a half before the highlight of her day. Really the highlight of her month............her friend Allyson and her mom, Amy, came over for a play date. It was so fun as the girls worked and earned a Brownie Badge. We ironed on other patches, the girls tried on their vests, and we ate and drank lemonade. It felt just like old times. Allyson, I believe, was Karina's first friend in Altus, OK. They were in ballet together, preschool and Kindergarten together. I have written of her before. This precious child has watched Karina go through diagnosis, many steroids, baldness, sickness, moody episodes from steroids and now the devastating virus where she can not walk, run and play the way they used to. Karina and Allyson used to rearrange the furniture in her room and play dress up until we forced them to change. Many many fond memories. Thank you to this most faithful friend and mom to keep in close touch through it all.

My parents will be up for the day tomorrow for us to get to Children's. They will attend Torin's Thanksgiving feast since I most likely will not be there. On Wednesday we have the privilege of having our summer time babysitter, Renee, over for the day. The kids ask me everyday how many more days until they get to see Renee. The boys are calculating how many hours they get to spend with her since they have to be in school until 1 pm. They completely love her and we do too as she spent so much time with us over the summer. Renee is a beautiful young Christian woman filled with talent, optimism, a "can do" attitude and energy! I will capture some new photos of them together.

Karina's sleep schedule has been off the past few weeks which make daily life hard to deal with. We feel so fatigued at times. We are trying to get more sleep to better handle the demands of each day. I feel a blanket of peace right now, a spirit of thankfulness for just what we have and the ability to rest in HIM for our cares and burdens.

Thank you for praying for us. We feel it!

Blessings,

Dana

Thursday, November 15, 2007 8:09 PM CST

Karina is doing okay. She has been tired and not very hungry yesterday and today. We are getting a bit more concerned with the continual stomach issues. We may be facing a colonoscopy in the near future.

Today's day at Children's went well. Karina's blood counts are stable this week. Her hemoglobin is in the mid 8's and her other numbers are fine. We saw a different doctor today and she did a super job tending to the details of our apt not knowing Karina very well. Karina started thyroid medication which she will most likely take for the rest of her life. I am rather excited about this drug because I think it is the key to unlocking some major issues with Karina that are preventing further progress of her therapy. She has low energy, feels cold even on warm days and is holding onto extra weight from steroids. By getting her thyroid to a functional level, these symptoms should begin to resolve. I have great hope for changes in Karina's energy level, weight loss and overall mood as her body adjusts. Please pray that the medicine is effective and helpful.

Kairna received a breathing treatment today like she used to have which is to protect her lungs from pneumonia. She did amazingly well with that uncomfortable process. She continues to have needle sticks in her veins for blood. She cries a bit but holds completely still and is very patient. We have two special friends, Pat and Sam, who comes each time to draw blood as a favor. They have made our lives so much easier.

Today was our last visit in the clinic that we have known since last summer. Children’s has built a new inpatient and clinic area on a new wing of the hospital. It is 3 football fields long and state of the art from one end to the other. I guess we are looking forward to seeing the much needed treatment facility truly wishing that we did not have to.

We head back next Tuesday to check on Karina's blood. Karina's insulin is just about finished. As the steroids have come down so has her need for insulin. We rarely have to give insulin before meals and she is down to a very small dose before bed. Praise God for this improvement allowing Karina to not have to endure 4 shots a day.

Please keep praying. Here is a funny for you...............the endocrinologist I refered to in the last posting is leaving Children's so we will not have to be seen by her again. Yippy!!!!!!!!!!!

Blessings,
Dana

Saturday, November 10, 2007 9:27 PM CST

Karina's doctor visit went well on Thursday. It was a long and hard week for Karina but she obviously has more energy and alertness since receiving blood on Wednesday.

The endocrinologist will look at one more blood test on Karina's thyroid and recommend medication. The wait was long for the apt and disappointing. She spoke not to me but to other medical staff in the room; spoke about Karina as if she were not there assuming by her appearance that she had no brain/alertness/awareness to comprehend what was being said about her. Can you tell I was not impressed!! Actually, I will not have another apt with her again and we will find someone else to monitor her thyroid levels.

The bone marrow transplant doctor did want to see us again even though we had an apt the day before with him. This is the amazing side of Karina's medical team that continues to impress us. He did lower her steroids again to 25mg one day and 0 the next. We will stay at this level for a few months as the taper begins for the other two immune suppressive drugs. We have lowered the next evil drug in the mix. My poor dad spent two hours dealing with pharmacies and new prescriptions with new doses to get us all stocked on Thursday. Karina's kidney functions raised rapidly and thus the need to begin the taper now.

The bone marrow doctor felt the need to have a conference call with her neurologist and the GHVD specialist at the NIH regarding Karina's neurological status and the direct impact the drugs she is on may be having. They all agreed that she needs to get off immune suppressive drugs ASAP to allow her brain to begin healing. The neurologist feels that this is a chronic viral infection and will not allow healing until Karina has an immune system. This has to be done delicately to prevent the GVHD from become angry in her body. What is the time frame.............we don't know. It is a wait and see game. Pray for wisdom for the doctors.

Right now Karina has a slight flair of GVHD in her skin. It is red and rashy in places. We will watch it carefully.

Daily life has been very difficult lately. It seems everywhere I look there are reminders of who Karina was. Today I picked up her Barbie Pink bike to move it and was flooded with emotions of the many miles she rode next to me on my exercise walks around the golf course in OK, her learning to ride two wheels the first time Dwight let go of her at only 4 years old, the way she would ride down the street as fast as she could go and lift her feet up and put them on the middle bar to coast. Every photo in our house is of a very different child then the one we now know as see. The dolls, dress up clothes, Polly Pockets, play jewelry and doodle pads now all lay on the shelf unused and not wanted. Groups of girls run and play everywhere I seem to look. The stages of grief are a bit like experiencing a death. Anger, denial, grief, sadness etc.....Who is the new Karina? We don't really know as each day hold a new secret to the child that has been through a physical and mental war. Please pray for acceptance for whatever God unfolds before us. Of course we love every ounce of her being but we terribly miss the child we once had.

In God's eyes Karina is perfect!! His plan for her is exciting and we are given the awesome job of executing that plan in God's time. We can no longer want for our selfish desires but want what God has in store. That is a better plan that any I could strum up myself. We patiently wait for each new day to see sunshine on cloudy days that only God can provide. Pray that our eyes and hearts are humbly open to receive His blessings.

We give thanks daily for your prayers and correspondence.

Blessings,
Dana

Thursday, November 8, 2007 7:42 AM CST

We spent 4 days in Williamsburg with my parents and had a blessed weekend with family. We knew that Karina's blood counts were low because she was not herself. Sure enough we had her hemoglobin checked on Tuesday afternoon and the results said that she was dangerously low at 5.2. Yipes! We headed in to Children's first thing yesterday morning to have it rechecked and then transfuse. She was truly at 7.0 and not 5.2 when the blood was taken from her vein which is the most accurate. We stayed for the day for a transfusion and Karina is much more herself and feeling stronger.

There are many more details to write but I will update again in the next day or two after our apt today with the endocrinologist this morning.

I made a terrible/horrific/shocking/scary mistake with Karina's medication last night. I accidentally gave her a massive dose of blood pressure medicine using the wrong measuring device by accident. I have two brown bottles with white liquid in them.........her only two liquid medications. I grabbed the wrong brown bottle. I immediately called Children's and they had us monitor her pressure every 30 minutes the every hour. Praise God for protecting her from serious harm or side effects. We did see the pressure go very low but not enough to take her to the ER. The doctor was very comforting and reassuring on the phone that these things do happen often. Today I am at peace.

I am personally struggling and choosing to be thankful for the cure available for Karina and the medications available rather than the resentment I easily feel for the devastating disabilities she has endured. Minute by minute I am praying for acceptance and peace.

Blessings,
Dana

Thursday, November 8, 2007 7:42 AM CST

We spent 4 days in Williamsburg with my parents and had a blessed weekend with family. We knew that Karina's blood counts were low because she was not herself. Sure enough we had her hemoglobin checked on Tuesday afternoon and the results said that she was dangerously low at 5.2. Yipes! We headed in to Children's first thing yesterday morning to have it rechecked and then transfuse. She was truly at 7.0 and not 5.2 when the blood was taken from her vein which is the most accurate. We stayed for the day for a transfusion and Karina is much more herself and feeling stronger.

There are many more details to write but I will update again in the next day or two after our apt today with the endocrinologist this morning.

I made a terrible/horrific/shocking/scary mistake with Karina's medication last night. I accidentally gave her a massive dose of blood pressure medicine using the wrong measuring device by accident. I have two brown bottles with white liquid in them.........her only two liquid medications. I grabbed the wrong brown bottle. I immediately called Children's and they had us monitor her pressure every 30 minutes the every hour. Praise God for protecting her from serious harm or side effects. We did see the pressure go very low but not enough to take her to the ER. The doctor was very comforting and reassuring on the phone that these things do happen often. Today I am at peace.

I am personally struggling and choosing to be thankful for the cure available for Karina and the medications available rather than the resentment I easily feel for the devastating disabilities she has endured. Minute by minute I am praying for acceptance and peace.

Blessings,
Dana

Thursday, November 1, 2007 9:48 AM CDT

A miracle! Our apt yesterday at Children's showed that Karina's hemoglobin came up to a safer 8.1 from 6.3 on Monday. A miracle for sure as the doctor had no explanation. We got up early and headed into the city in preparation for a long day with every intention of being home for trick or treating. The blood was up on the clinic floor, Karina was premedicated and all of a sudden the nurse came in with the news. We were thrilled and headed home by 3 pm for a fun filled night. SEE NEW PHOTOS.

Unfortunately, Karina does not seem to be feeling the greatest. She has had morning time nausea, vomiting for no explained reason other than her hemoglobin is low and she may just feel cruddy. Today she was very tired, a bit pale and took a morning nap which is a never in our house. We cancelled her teacher and her Omi came for the afternoon so I could get out for a much needed break from reality. Thanks, Omi!

Last night was so fun for our family as we all went trick or treating together. (Last year Karina had been in her tiny white room in transplant for 51 days and counting, dressed as a cowgirl and watching out her door to see the staff in costume.) All three kids were ghosts and named themselves Boo, Boo Boo, and Boo Boo Boo which were on the front of their costumes. Karina went in her stroller the entire time with the boys and friends. Karina's precious friends Katie and Anna went up the steps to each door and asked for a piece of candy for their friend too. They would each get a piece and bring it to her, show her what it was and put it in her bucket. They did not forget a single time and sure made the night extra special for Karina.

The doctor and I discussed the near future for Karina's medication and the weaning process. He is willing to be aggressive if Dwight and I agree. There will always be a risk of a GVHD flare. Please be in prayer about this major decision for Karina that it is the wisest and safest. We live day by day as Karina's medical status is still so fragile. When we feel the lonely road we are traveling is unpaved and bumpy, we simply read the journal guestbook, pray to our Heavenly Father and realize that we are not alone. Thank you for the faith you have on our behalf for Karina's healing.

Blessings,
Dana

Tuesday, October 30, 2007 8:25 PM CDT

Yesterday Karina received a dose of antibodies. The nurse had trouble finding a vein that would hold the IV for the 3 1/2 hour infusion. She was very concerned to not be rough with Karina and cause pain and bruises. She called a colleague who drove an hour and a half and was able to start the IV. The day turned into a 7 1/2 hour ordeal. We were tired but all went well.

Today was another busy medical day. Information overload as we started at neurology and then went to the NIH for dermatology and GVHD specialist. Karina's MRI remains unchanged and will until her immune system is allowed to work independently. She must get off steroids as part of the healing process as well as the immune suppressive drugs. It is a very frustrating process for Dwight and I as we know that some immune suppression is necessary to keep serious side effects of GVHD away but at the same time the neurological deficits is devastating to Karina and our family. What takes priority? I am not sure anyone knows other than to say that each reduction in medication must be slow and balanced to not set off the GVHD.

The doctor at the NIH provided many suggestions for her care but they remain recommendations until her primary doctors at Children's make the move to do these changes. I will let you know as they become reality in the future.

Karina's hemoglobin has once again dropped to a very low level. Tomorrow we head into Children's for an exam as well as a blood transfusion. We need to be home by five pm for a parent teacher conference then trick or treating. We are desperately trying to have a bit of normalcy for Karina and the boys.

Please pray for strength for Karina and myself. These days are long and difficult, physically and emotionally. Please pray for wisdom for the doctors and for me as I ask questions calmly, patiently and accurately.

Blessings,
Dana

Friday, October 26, 2007 8:38 PM CDT

Today was long and good! How about that for specifics. Karina started her day early at the lab to check out her crazy hemoglobin. We then went to MRI for the prep work and as we were waiting a little note was slipped to us saying that Karina's blood was holding steady at 7.9 from 7.8 on Tuesday. The magic number for transfusions is below 7.0. So we were thrilled with the news and Karina nearly jumped out of her stroller. Baby steps are just fine for us as God shows us his hand in big and small ways.

The MRI went uneventfully and Karina woke from the sedation just like all her past sedations. Crying confused a bit, cold and thirsty which all were resolved in about 45 minutes. We then headed to the nephrologist for a bit more good news. He is taking away a 6 pill a day medicine and adding one pill. We like these changes. This doctor is extremely kind, compassionate and thorough. He carefully studied her medication list and reviewed her recent lab work to determine what changes he needed to make. He feels that the medicine he removed could be causing the loose stool problems and not helping the blood pressure. We will wait and see.

We were so happy to be headed home by 4 pm until we saw the Friday afternoon, pouring down rain, Washington DC traffic. We made it home to the boys who were out playing in the rain and Dwight's mom who had graciously spent yet another day at our house. To top it off she had prepared a beautiful dinner for us. We are blessed.

I received a CD on suffering from a special friend last night. The speaker made an analogy that hit home with me. She referred to those suffering as being in God's waiting room. I feel that is just where our family is right now, waiting patiently to allow God to do his work in our lives. As I thought about this all day I felt all the emotions of waiting in any waiting room (which we have seen many) and the feelings and thoughts we all have experienced. It is usually a pretty, dimly lit room with comfortable chairs but not ones you would want to sit in for too long, friendly staff, waiting for the friend (nurse) to call you back to see the healer (doctor). The feeling inside my stomach is nervous but confident as I know the healer (doctor) will examine me and guide me in what I need to do to get better. When I get in the office, he evaluates me and my heart and prescribes medicine. That medicine is faith. He tells me where I can pick up my prescriptions to help me. The prescriptions are all in the Bible. All I have to do is take them, believe in the truth and trust in Him.

I feel comfort in this waiting room because I know that this is the specialist of all specialists. The divine healer, the God who knows every hair on my daughters head, the maker of her precious body, and the creator who we will spend eternity with. God will deliver us through this tremendous trial as better Christian's, increased faith, more compassion and greater knowledge.

Blessings to you and thank you so much for your prayers, love, cards, guest book entries and friendships. We need each of these now more than ever.

New photos!

Dana

Wednesday, October 24, 2007 12:55 AM CDT

Karina's apt at Children's yesterday went okay. Her hemoglobin was down to 7.8 and we are anticipating needing a blood transfusion by the end of the week. We are sad about this as the pattern is continuing. Karina's previous doctor and the former chief of the bone marrow transplant team was in the office yesterday and came by to say hello and did an exam. He recommended that we check Karina's stool to see if there is GVHD involvement in the GI tract. We pray that this is not the case. If there is blood in her stool then they would like to do a colonoscopy. I will ask a lot of questions before we get to that point. He also recommended another skin biopsy which is painful but not a really big deal to check the condition of the lymphocytes in the skin.

This Friday we will go in early to have blood drawn before her MRI. After the MRI she will go to the nephrologist to check her blood pressure and medicine changes that have been made. We may have a handle on the blood pressure as it seems to be coming down today.

Please keep praying. Friday is a big day for Karina. She needs a lot of energy and strength to make it through the day. We pray for improvement in her cerebellum inflammation, rising hemoglobin and low blood pressure.

Thank you for lifting up Karina to the almighty healer.

Blessings,
Dana

Monday, October 22, 2007 8:52 AM CDT

The week has gone pretty well. Karina has battled nausea and vomiting everyday this past week occurring at noon consistently. Strange pattern but seems to be getting a touch better over the weekend.

Karina's skin is about the same. No great redness even with the reduction in steroids. Here is an idea where we are on doses of steroids. From April to August she was on 25 mg 2X per day. That is a high dose for her age and size. In July she received high dose via IV which was 750mg 3 days consecutively. After our visit to the NIH at the end of July her antifungal medicine was changed because it was known to cause extreme sun sensitivity. The dermatologist there felt that part of her redness was sun related. Her dose has come down to 25mg one time a day and the opposite day she is down to 15mg. We alternate these doses and will continue to go down until she is taking 25mg every other day. That may be as soon as 3 weeks away although I feel we need to go a bit slower. The next step will be to alternate an immune suppressive on the opposite day of the steroids. I hope that makes a touch of sense to you all.

Karina was able to attend both boys’ baseball games this weekend. She was bundled in blankets and tuckered out by then end of the second game but seemed to enjoy herself. I question her vision for distance. I don't think she could follow the game completely. We had quiet a few people stop and stare at Karina. Some children asked if she was a baby. I pray that she did not hear them and if she did, didn't care. We had a sweet father and son come up and ask if they could say hello to Karina. It was from the heart and made Karina smile. I guess there is another aspect of this that we will deal with as her exposure to the real world approaches.

Therapy and home schooling/home bound studies are all going well. Tomorrow we head into Children's and Friday is a repeat MRI. We are prayerful about these appointments. God continues to see us through each day, finding the sunshine in darkness, blessings in suffering, peace in turmoil. Our faith remains strong that God has chosen Karina's life to be different than what we expected and daily we are learning to accept the reality instead of wish for yesterday.

Blessings,
Dana

Tuesday, October 16, 2007 8:17 PM CDT

The Sones house is happy tonight. Karina's hemoglobin is a steady 9.7 which is the same as last Friday. The doctor was very pleased. She only had to have her finger pricked today which was our first sign that the day was going to be smooth.


The doctor is further reducing her steroids and we are so pleased as this is approaching a tolerable dose that should allow her to get off insulin and 4 blood pressure medicines or at least reduce them. We are several weeks from this but heading in the right direction. The doctor is also reducing a dose of her immune suppressive drug. My motherly instinct woke me in the middle of the night this past weekend. I woke feeling that I was overdosing her on this particular medicine (she takes 10 pills a day of just this drug). I actually held a dose back from her that night, which I never do and a big "no no" because it is a measured level in her blood. But I just felt I should do it. Today they said her level was too high and they were stopping one of the daily doses.

Please pray that she continues to feel well. Her spirits have been good and we are seeing some touches of feisty Karina pop up. Examples are; kindly telling her brother no when he asked if he could have a turn on the computer, saying no thank you to two delicious home cooked dinners two nights in a row, asking to go to the hospital gift shop for a treat after a simple finger prick etc..........

We have an apt for the next three weeks for blood work and also an endocrinologist to discuss her thyroid. If her thyroid is hypoactive, then we want to know about it so we can increase her energy and increase her metabolism to start the weight loss that she desperately needs.

We would like to think that Karina will start to walk more independently in the future, but at this point we have seen no progress. She will have another MRI on Oct 26th and a follow up at The National Institutes of Health on the 30th for her skin condition. Please be in prayer about these apts coming up.

Karina is an angel in a stroller around our house. She brings a grin to all who walk past her, sit with her, a hug to all who come close, an example of patience as she waits for someone to play with and a grateful spirit for her life.

We are very thankful to be home and not in the hospital, cancer free and on our way up a long hill to recovery.

This past weekend was the Light the Night Walk sponsored by the Leukemia and Lymphoma Society in Wash DC. I was struggling with back pain and did not attend but some dear friends did in honor of Karina. We want to thank these special families who do so much to show us they care. Thank you to the Richter's, the Summer's and the Lee's for holding a light up for Karina! Each of your friendships means so much to us. There may be others that I simply don't know about. Next year we hope to all walk as a family and we hope many of you will join us.

We feel your embrase of love, prayers and friendship through the guest book. Thank you.


Blessings,
Dana

Sunday, October 14, 2007 8:43 PM CDT

I want to share with you a wonderful story of faith, love, dedication and compassion. Let me explain.

This weekend there was an annual race sponsored by southwest Oklahoma Cancer Center called the Spirit of Survival. It took place in a town called Medicine Park, OK located in the Wichita Wildlife Mountain Refuge. This park is located near Lawton, OK (about 45 miles from Altus, our last assignment) and is the home to hundreds of buffalo (bison), long horn steer, prairie dogs, deer and other wild life. This was a place our family visited on many, many occasions holding very fond memories.


Our children attended Advance Learning Center now called Altus Christian Academy while we lived in OK. This school heard about the race and decided to run the marathon in honor of Karina. The kids ran/walked 25 miles over the past several weeks and walked the last 1.2 miles of the marathon today in the wildlife refuge. The school had over 80% participation winning a generous check for their school. The kids ran enough extra miles for the boys to also receive a T-shirt. They will be thrilled.

This race was called the Spirit of Survival but truly it is the Spirit of Altus Oklahoma. The people of Altus have carried Karina in their hearts long after we left. It just is overwhelming to me as I often say that the only life Karina knows and remembers is living and going to church, school and ballet in Altus, Oklahoma. She was 2 3/4 when we moved there and 5 3/4 when we left. Her world was Altus and sadly she knows no life here in VA. She does not know her school, has not attended ballet, played soccer, gone out to eat etc..........So the passion to which this school has dedicated to Karina is deeply moving.

This race in Karina's honor was made possible by a dear friend, Nicole Hagedorn. This is a friend I have mentioned in the past not only as my doctor but now a friend and confident. She has faithfully guided me emotionally and medically through some tough times. Thank you, Nicole for your enthusiasm, hard work, faith in kids/school, education on exercise and friendship. I know that Karina's (and Braydin's) kindergarten teacher, Melinda King and owner Dana Darby were instrumental in making this race happen. Congratulations Altus Christian Academy on a job well done!

In my heart, I would call this race the Spirit of Altus Christian Academy! Our goal will be for our family to attend next year and for Karina to complete the 1.2 mile race with her friends! It is our goal to see this happen.

Blessings,
Dana

Saturday, October 13, 2007 8:16 PM CDT

I am tardy with the blood count update, but all is well. The transfusion took and we need to pray that it continues to hold. We are definitely not out of the woods for another two weeks or so.

Karina's skin has been very red and rashy concerning us as we started to steroid reduction again this week. Today it has started to look much better which is nothing short of God's provision for her. We pray it continues to heal as her doctor wants to continue the reduction on Tuesday.

Today, Karina woke in a wonderful mood and it carried her all the way to tonight. She said that she feels okay. I do think that going to Braydin's baseball game today was a real treat. Trying to find a shady spot in the middle of a ball field is not easy. We sat in the outfield between two portable buildings, happily! Just to be there sitting together was joyful. We have avoided people, the sun and heat all summer leaving us very few social activities. We love the cooler temperatures.

I have had a rough week with back pain and I ask your prayer for relief to be able to lift Karina and carry on this week.

Blessings,
Dana

Thursday, October 11, 2007 8:39 PM CDT

To those of you curious about Karina's blood count today........me too! We went to a satellite office today only to be turned away because we were not informed of their very specific (and limited)schedule for blood draws from the finger. I am chuckling as I write this because it is a silly as it sounds. Anyway, we will go tomorrow with a scheduled apt in the afternoon. If I have results before evening, I will update and let you know. I do expect her red count to be just perfect. We are praying for continued production of red cells from her bone marrow as it has been doing. We have changed one medication and will attempt to change another to see if this helps.

Thank you for all you do to encourage us and lift us up in prayer. We finally got beautiful fall temperatures here in the east and are looking forward to a quite and healthy weekend as a family. We hope that you are doing the same.

Blessings,
Dana

Tuesday, October 9, 2007 8:43 PM CDT

What to report first? I am quick to complain tonight from sheer fatigue mentally and physically but will consciously choose to not! How is that for mental power? I feel so weak, but God is so strong to pick me up to face each new day. I will take everyday since I know I have Christ to walk me through.

We had the opportunity to visit Wisp Mountain Resort at Deep Creek Lake this weekend thanks to Believe in Tomorrow. We headed 3 1/2 hours north and west into the Maryland countryside to be taken by the complete beauty of the mountains. (I am prejudice to VA and never new another state could be so beautiful). The leaves were changing, the sun shining and we felt transformed from city slickers to country bumpkins for a few days.

We stayed in a beautiful log cabin on the top of a mountain overlooking the lake. It was simply beautiful and a wonderful weekend to relax, reflect, regroup and regain energy for the days ahead..........whatever God has in store. He completely provided this wonderful weekend for our family. We all had fun. The highlight was a mountain roller coaster that Karina got to ride. It reminded us that her dare devil/no fear nature still resides in her disabled body. I will post pictures in the next day or so.

We arrived home last night and this morning headed into Children's for her weekly blood check. She is now having needle IV's for each blood draw which is tough for her. She had three needles when all was said and done. Her hemoglobin dropped once again to 6 and required another blood transfusion. This is her third in three weeks and the doctors are baffled. They decided that it may be medication induced and have discharged on of them. We have a few other possibilities that could be contributed. If not then we have to consider adding a new drug. Not the route we want to go if we can help it.

We were gone 10 hours today and she never once complained about anything. The hospital had a vender sale today so she was treated to two new bracelets which she was thrilled.


She is eagerly working on her Brownie Girl Scout Troop badges. She loves these projects and is learning and having fun at it. During one of these projects the questions asked were about feelings, i.e. happy, sad, scared, frustrated, angry etc........She could not report one negative thing. She holds no anger for what has happened to her body, all the medicine, the inability to do anything physically that she used to do. NOTHING! She is obviously a child of Christ with a heart like his. Dwight and I on the other hand have felt many of the feelings we rather not admit. She is teaching us daily about acceptance, grace, mercy, patience, love, attitude and tolerance. It is humbling. Thank you, dear God, for placing this amazing child in our lives. Please help us to love her as you do and learn from her every breath.

Thursday we will go for another blood check to confirm that the transfusion took then back to Children's next Tuesday as well. Please pray that the medicine change will fix the hemoglobin problem and that it is nothing more serious. We feel like we just can't get a break from issues. There is something continually. We are so tired and are praying for relief for Karina's precious body to be given a break to begin healing. Please pray with us.

Blessings,
Dana

Thursday, October 4, 2007 8:13 AM CDT

Karina's hemaglobin is holding steady at 9.7 and we are very happy about this. The next week or two will tell us if her bone marrow can produce enough on its own or if something is destroying her red cells. We are praying it was just an isolated incident.

Our day at Children's was brightened by a wonderful visit with our friend Mallory and her mom Susan. This family has shined through dark days of cancer treatment and has lifted my faith and hopes on many occasions! Thank you for the soft and pretty blanket.

Karina had a great day yesterday. She woke in a pleasant mood and had OT, PT and Speech therapy all morning participating willingly. We are making strides in this area as the past several therapy sessions she has cried so much that she throws up. Her pleasant mood tells us that she is starting to feel better. Our freind Glynda had the best idea. Her Girl Scout Troup named Karina their honory member and she will now wear a vest and hat, earn badges and meet the troup in the near future. Karina is so excited about this opportunity to do something like all other girls her age. We were touched by the thought. Now if I can only keep up with the desire for Karina to earn a badge a day? I am hoping to earn a few badges for myself as well!

Karina is still on a very high dose of antibiotics until next Monday. We had the pleasure of meeting the new chief of bone marrow transplant at Children's on Tuesday. Dr. Fry came from The National Institutes of Health about a month ago. We were very pleased with his knowledge of Karina's case, his "lets try things differently" if needed attitude, openness to hear a mothers "cry" for movement toward healing and investment of time in getting to know us. We definitely look forward to working with him in the future.

Karina is in good spirits these days which helps me in caring for her. The past week has been a time of chatting with friends to stay connected. This circle of girlfriends as been a source of strength and encouragement to me. I truly appreciate each of you.

I just received a phone call from Children's which told us that Karina's blood remains 100onor cells! Praise God.


New Photos!

Blessings,
Dana

Sunday, September 30, 2007 8:46 PM CDT

We are home and doing well. Karina seems just fine to us with no traces of just being in the hospital for 4 days. Her skin seems to be healing after being very red and rashy while in the hospital. We pray it continues to heal so we can continue on the steroid reduction.

Tonight we celebrated her one year transplant anniversary with her Omi and Bubba (Dwight's parents). Karina requested Chinese food and sugar free ice cream. She opened gifts and had a wonderful evening.

I am a bit under the weather and headed to bed. I will update after our Tuesday doctors apt.

Blessings,
Dana

Friday, September 28, 2007 8:34 PM CDT

All seems to be well this evening. Last night Karina had a four hour infusion of antibodies that went smoothly. Immediately following that they did a blood transfusion. Her hemaglobin dropped again to a very low level. The doctors remain unsure why this is happening and if it continues then they will need to do a bone marrow biopsy to see what the marrow is doing with the red cells. All of this ended around 4 am. Dwight got stuck with the allnighter last night but tolerated it pleasantly. Thanks, Daddy!

Karina is in good spirits. She had to get a new IV this evening which is painful for her. She cries but doesn't seem to have much more in her to kick and fight about it. Her favorite IV tech came to do it. Sam is a very large baby faced guy with hands the size of a linebackers but gentle as a giant. Very sweet guy who does his job well. The future of Karina having blood draws via her veins remains an unanswered question. We will have to consider another broviac which breaks our hearts. This is an IV of sorts surgically inserted and removed. It just feels like we are going in the wrong direction in the healing process.

Karina's skin is red and rash like all over which tells us that her GVHD is not happy. Please pray that it gets happy in the next few days. We saw this reaction after her last blood transfusion and it did heal on its own.

The blood cultures came back sensitive to an antibiotic that can be taken orally at home. Praise God for this answer to prayer. Our other option was to stay 7 days in an isolation room on a different floor because of her chicken pox exposure. No thank you to that!

We are to be discharged tomorrow by 3 pm on oral antibiotics taken 4 times a day. Thank you for checking in and praying faithfully for Karina.


Thank you for your prayers for my neck and back. Both are a touch better and are probably related to extreme fatigue. Hence, I am off to bed.

Blessings,
Dana

Thursday, September 27, 2007 10:35 AM CDT

Karina and I had a restless nights sleep but woke to a beautiful morning with the sun shining in our hearts for God's provisions. He has provided us with brilliant doctors, caring nurses, a clean and comfortable hospital and powerful medications to clear this infection.

Karina's blood is growing gram positive bacteria. This is our third time with infection from her IV lines. We are waiting for the tests that determine sensitivity to antibiotics to determine how to treat this. If not treated or treated in accurately it is deadly. We pray for precise interpretation of the blood and antibiotics.

Thank you for praying for Karina. Please pray for my neck and back pain as the lifting to care for Karina and air mattress sleeping prevent relief.

I now know the cause for my restlessness last night. Our precious friend, Mitch went to heaven last night at 3am. Mitch was a good and faithful servent for Christ. The past two weeks Dwight and I have felt the anguish for John and Tracy as they have walked a path too familiar to us. We are feeling their heartache as well as rejoicing that the battle for Mitch has been won for Christ. He is in heaven and we will all meet this brave young man one day. GoMitchGo!!! Thank you to the prayer warriors who felt lead to also pray for Mitch and his family along with Karina.

Blessings to each of you for your faithful prayers. We are so ready for Karina to be healed, well, strong and happy again. We are leaning on Christ every minute of everyday and what a peace we have knowing that He never leaves us and is providing for our every need.

Wednesday, September 26, 2007 8:57 PM CDT

Happy one year birthday to Karina! Today marks the day she received her life saving cord blood transplant here at Children's in Wash DC. Believe it or not, we are back in the hospital and in the very room she had her transplant and the nurse taking care of her is the nurse we had one year ago. This nurse was brand new one year ago and it was her first transplant. Her name is Allison and she is a precious person who truly cares about Karina. Her and I have recalled the excitement of that day along with the frustrations and fears since that time.

This morning Karina woke feeling poor and with a slight fever. After a few phone calls to cancel the rest of her days therapy and nurse home visit, we headed into Childrens. She had been complaining about her PIC line which is the IV line that has been in since early July. Her skin around it was raw and getting infected. They drew blood cultures to confirm that there is nothing growing in her blood and will give her 3 days of antibiotics via a new IV in her hand.

She seems to be feeling better but very tired. The fever is gone and the PIC line was pulled out. Now we face the decision if we should leave it out (that is my vote) or put one back in at a later date. Time will tell.

The good news is that her hemoglobin is rising on its own. This is very exciting and we pray that it continues to hold its own. We may not be totally out of the woods on that just yet, but definitely headed in the right direction. Her blood counts show no other signs of infection.

We will be here until at least Friday evening. Dwight's mom and dad dropped everything today to jump in, get the boys off the bus, homework, feed them, take them to two different ball games at two different fields and will be at the house at 6:30 am tomorrow for Dwight to head to work. Thank you mom and dad! My parents will be jumping in this weekend. We truly don't know what we would do without these two amazingly dedicated sets of grandparents. We are blessed and grateful.

God has a blanket of peace and comfort over us. We continue to trust Him in all things.

Blessings,
Dana

Tuesday, September 25, 2007 9:18 PM CDT

Tomorrow is the one year anniversary of Karina's transplant. I thought I would recap the year and tell you more about where Karina is and where we are as a family. I have written a lot of facts lately trying to leave out the emotional side of things but tonight that is not possible.

Sept 19th, 2006 Karina was admitted to Children's National Medical Center to begin the pretreatment for her transplant. As we walked down the long hallway, through the double doors to the bone marrow transplant area, our hearts were very heavy. This had to be similar to walking into jail to "do your time". Her room was painted with very dark colors like a jungle, had a hazy window that lead to nothing and was very small. I was emotional from the beginning. She then began 3 days of full body irradiation at another hospital (went by ambulance), twice a day to make 6 treatments. After that, she received high dose chemo for 3 days then a day of rest. She was so sick! On day 7 she had the transplant which was similar to a blood transfusion. This bag was filled with life for our Karina. We felt very hopeful and excited. We took a lot of pictures and the staff was very excited.

There were several bumps in the road after our 6 1/2 weeks in the hospital but all manageable. Life was fragile for Karina's very weak body. She had no immune system. The end of February brought on a sudden illness that left Karina with neurological damage. It is presumed to have been a virus passing through her that found a weak spot in her brain. Her brain was vulnerable which was a direct cause of interthecal methotrexate (chemo) given to her during leukemia treatment. Karina was completely "out" for about 6 weeks, fed through her IV, unable to talk clearly, unable to focus her eyes, unable to walk without much help, unable to sleep more than an hour or two at a time and on and on........

Since then, Karina has recovered tremendously! She spends her days sitting in her stroller, on the sofa or a chair. She can walk short distances with help. She loves to do crafts and school work. She can now focus her eyes, talk clearly in a normal tone of voice, read slowly, write words similar to a 3 or 4 year old, read a clock, count small amounts of money etc........As the saying goes, "you've come a long way baby." We are so very proud of her.

Medically, Karina is not out of the woods. We anticipated Karina to be back in school, walking alone and off medications a year after transplant. She is still several months away from that. She remains on heavy immune suppressive drugs, insulin for diabetes, many supplements for deficiencies, three blood pressure medications and steroids. We have a ways to go but we remain confident that God is carrying Karina each day toward regained health.


Heading into transplant, we thought the transplant would either be a success or failure, but not something in-between. This is surely not the life we wanted for Karina or for our family. We never thought there would be such severe and life changing complications, we never thought we would be pushing Karina around in a stroller, we never thought we would be living in isolation for over a year etc........But God did! He knows Karina's every hair on her head. He knows every cell in her body. Every organ in Karina's body has been affected in some way. Karina has scares externally and internally from the chemo, procedures and irradiation. God knows all of this because she is His child. We would not trade this perfect child for anything. We can humble admit that Karina has brought strength to our weakness, bravery to our cowardness, courage to our fear, faith to our faithless hearts, contentment to our discontentment, forgiveness to our bitterness, happiness to our sadness, patience to our impatience, smiles to our frowns and perseverance to our desire to quit. God lives in this child's heart. She has endured more than any of you could ever know.


The boys are fine. They have been through many adjustment periods, dealt with short tempered mom and dad, strived to make the best without complaints living in isolation with Karina. They interact with Karina and refer to times in the future when she is "better". They so want her to get up and play with them, swing, ride bikes, run and swim like old times. None of us know how much of this will happen. For now they accept her as she is, are fiercely protective of her, attentive of her needs and are happy to see her smiling face daily.

God has provided for our family the strength, grace, mercy, love, comfort and hope. He is faithful to his word. We firmly believe that He has a plan for Karina's life. We know that he is molding us and shaping us in His image. We know that the suffering and pain will bring glory to him as his plan unfolds in our lives.

We pray that the next year holds God's richest blessings on Karina's life to heal her fully allowing her to regain freedom and enjoyment in life.

Please know that without your prayers, encouragement, cards, calls, guest book entries our family would not be as strong. You have prayed when we had no words, you cried when we had no tears left, you hugged us when we felt numb with sadness. Our faith continues to grow as we pray that yours does as well. We love you all.

"Trust in the Lord with all thy heart and lean not on thy own understanding. In all thy ways acknowledge Him and he shall direct your path.” Proverbs 3:5-6


Blessings!

Saturday, September 22, 2007 8:15 PM CDT

We are happy to report that Karina's skin is improving greatly since Thursday. The doctor thinks that she had a reaction to the blood transfusion which is pretty common. Her skin is returning to the beautiful "white" skin that we so desperately need for steroid reduction. It is not quite there but much better. We were worried for a bit that we had been set back to a place where we did not want to be. Praise God.

Karina's previous bone marrow doctor, Dr. Kamani, was informed regarding Karina's sudden drop in hemaglobin and he said to watch for GVHD involvement as a cause. We will not know for several more weeks if the blood transfusion will hold and Karina will make red blood cells on her own as she was before. Please pray about this with us as this could be a serious complication that we surely don't want.

Today I received a call on my cell phone from our nurse practitioner who "never" calls on the weekend. Not a good feeling but she called to inform us that Karina may have been exposed to chicken pox in the hospital/clinic on Wednesday when we were there for our blood transfusion. Supports the feeling that we want to be at the hospital as little as possibe! Are we worried? A touch but not extremely as satan would have us be. We pray God's hand of protection on Karina. We can worry but why when we can't do anything about it and God has it in control.

The doctor does want Karina to have another dose of antibodies this week to further protect her from getting chicken pox/shingles. This is called IVIG and Karina has an infusion here at the house every 4-6 weeks anyway. This will raise her antibodies since she is not making them herself yet. After the immune suppressive drugs are weaned, she will start to produce her own antibodies.

Thank you for checking in with us. Karina seems to be in pretty good spirits. She hears and knows most every detail regarding her health and can't help but worry some too. Please pray for her sweet spirit to be protected from fear and anxiety.

Thank you for the wonderful guest book entries. Karina knows each person that writes recalling many fond memories from the past. We pray that there are many more precious times for her in the future............with you!

Blessings,
Dana

Thursday, September 20, 2007 12:10 AM CDT

What a day we had yesterday. The hemaglobin was in fact at a dangerously low level. I drew a blood sample yesterday and brought it to a local lab where they read the levels while I waited. I then headed home to get Karina to begin our trek into Children's for a very long afternoon and evening and almost morning..........

The Children's staff redrew blood to recheck and confirm the very low number and started to process of ordering blood. They blood arrived at 5:30 pm and ran until 11:15 pm last night. It was a very large volume of blood and needed to be run into her very slowly since her blood pressure is so high. They gave her a variety of medications to lower her pressure since adding blood increases volume and makes her heart pump harder. Eventually, we got the pressure reasonable and the blood into her body.

This morning she woke very itchy and rashy all over. This is heart breaking to us since we had made so much process with her GVHD. This may only be a reaction to the blood transfusion and not a flare of GVHD. We pray for that.


We gave her Bennadryl to ease the itch and hopefully decrease the reddness. Please pray for comfort for Karina as she does not feel very well.

I will write again in the next day or two as we recheck her red blood cells again tomorrow. Please pray that her sypmtoms resolve and that her hemaglobin recovers on its own. The choices that the doctors are considering right now is that this was all from a virus or her bone marrow has stopped making red blood cells. This would not be good and we pray not a likely chance.

We know that when we ask you to pray that you do, for that we are grateful. We serve a mighty God and we praise Him even in the storm.

Blessings,
Dana

Tuesday, September 18, 2007 8:19 PM CDT

Karina is plugging right along in the healing process. The next few months will be slow and steady as the doctors gently reduce the steroids and then immune suppressive drugs to not shock the body. This is a touchy process and one to take slowly. In the area of patience we are pros these days. We are thrilled to see her skin healing and not reacting to the reduction in steroids. If we can continue at this pace and problem free, we will be so pleased. We do feel God's grace daily on her life as He continues to protect her, carrying her every cell in His mighty hands.

Today's doctor apt went well. It was fairly quick and painless. Karina continues to run low in the area of potassium and magnesium so we are increasing the doses. What is a few more pills? A big deal to Karina. She asked her doctor how much longer she will have to take pills and he said a quite a few more months and after the new year. That is okay with us to keep her healthy. Karina's hemoglobin (red cell count) was either seriously miscalculated in the lab or something is wrong. Tomorrow I will draw blood and bring it to the lab for a recheck. Karina's home health nurse reassured me that many things can go wrong in the processing and not to worry until we recheck it. Also, if her level is truly that low, she should have low blood pressure, pale skin, dark circles and very tired.........none of which Karina has. Hum? I will let you know.

Thank you for praying for the home-bound studies "mess" I mentioned. The details of Karina's school work is slowly working itself out and we hope to have a teacher by next week. The boys are doing well in school. This is back to school week on top of baseball games so we are very busy. Last night, Karina got to get out of the car and watch Torin's baseball game. We stayed in the shade, blanket on in the beautiful fall weather. We felt like a family and Torin was thrilled to see ALL of us there cheering for him. Praise God for the simple things in life that we used to take for granted.

After two days away this weekend relaxing in the mountains with 8 precious women, I feel ready to continue on this journey. Throughout the weekend, I felt God reminding me of his faithfulness, greatness, power, gentleness, patience and love for his children.

Karina is in good spirits but missing friends. I need to work on carving out time for her to see friends and stay safe from germs. It is a very tough balance and easier to avoid but so important for her well-being. I struggle with this guilt.

Our family feels your love and prayers. I feel weary from writing what seems to be the same thing over and over, but know that your faith carries us when we feel weak. Thank you.

Blessings to you!

Thursday, September 13, 2007 8:48 PM CDT

Karina had a wonderful day just being herself. She is now initiating conversations, making jokes and eating less. All good things!

We received a call late today that Karina's kidney function test is back in the normal range. This is a miracle and complete answer to prayer and we are steering our excitement straight to heaven. There is not other explaination and we do pray that it remains normal given that she is taking drugs so toxic to her kidneys.

Also, yesterday I drew a blood level and my kind father-in- law raced it to the lab in an hour to check the level of her main imunosuppressive drug. That level also came back within range.

Karina continues to have a stomach ache everyday and then a sharp headache that usually resolves itself within 30 minutes or so. This is a bit of a mystery but the doctor thinks that it is a side affect of a medication.

Otherwise, Karina's skin remains good. It is getting whiter by the day it seems. Her skin overall still has some rash like red marks, scars, stretch marks on her hips and freckles. The important thing is that she is not red. Another sign of active GVHD is pealing fingernails and Karina's are almost completely grown out without any pealing.

Please pray for:

=lower blood pressure
=continued weight loss
=no GVHD
=no illness - Torin has a a stuffy nose (allergies or cold?)
=continued healing skin
=safety for the boys and Dwight as I head to a ladies retreat for the weekend. It has been many years since I have done this.
=continued improvement in Karina's cognitive status
=decreased tremors (her neurologist thinks they may be worse which means that the cerebellum may be more inflammed- we pray not)
=that her homebound studies teacher "mess" gets solved

We never know the words to say to show our deep appreciation for your prayers for Karina and our family. Last night at the ballfield, a very sweet lady came up to me and asked if I was Dana Sones. She said that she follows Kairna's website and prayers for her. I was shocked and asked her how she knew who I was and how did she find Karina's website. She said that a friend told her about the website and that she recognized Braydin on the ballfielf from the photos on the website. Unbelievable to me........I was simply amazed that she saw Braydin under to ballcap and me cheering for him. I must have been cheering a little too loud. That makes the reality of the website valid as we meet those who don't know Karina but feel led to pray for her.

Blessings to each of you. My prayer is that Karina's journey is causing others to see God in a real way, His presence in our lives, the power of prayer to change our lives, that faith is increased, that we know the need to share Christ with our own children, love our children deeper, desire to spend more time with those we love etc...........I could carry on for the rest of the evening, but you get my point. Our God is an awesome God, he reigns from heaven above, with wisdom, power and love. Our God is an awesome God!

please pray for our friend Mitch! his website is www.gomitchgo.com

blessings,
Dana

Sunday, September 9, 2007 9:14 PM CDT

Karina is doing things that remind us of Karina's true nature. She is wiggling to music in the car, chiming into conversations and beginning to wear that permanent smile on her sweet face. She is showing small signs of strengthening in her muscles. Steroids cause muscle weakness along with a slew of other terrible side effects. Karina seems encouraged by the improvements even though they are small.

She had a really good weekend. Unfortunately, her blood pressure is very high and we are concerned. She has had a few headaches that seem to resolve on their own but the large amounts of medication she is on for her blood pressure don't seem to be budging it. Please pray that it comes down very soon and that the doctor can prescribe something more effective.

I want to thank so many of you who have sent Karina cards this week for her birthday. She is working hard on writing notes for gifts she received, making the cards and all. Your love for her from afar means so much to her as this is truly her only connection with the outside world most of the time. AS the weather cools and the suns intensity decreases, Karina will be able to tolerate being outside much better.

Sept 26th is her one year post transplant date and we intend to celebrate the new life that she was given!

Please continue to pray for Karina's body, her organs, her skin, her immune system and the good health of our entire family. We nearly bathe in Germ X at our house.



New photos!

Blessings,

Dana

Wednesday, September 5, 2007 9:01 PM CDT

Dear Family and Friends,

Today we share good news, again. We are on a roll with the reduction of steroids. Karina was reduced to one dose a day and she will stay at this level for two weeks. At that point the doctors will look at her skin again and decide if they can further reduce. Her doctor's words were, "This is remarkable the improvement she has had. Keep doing whatever you are doing and we will see you in two weeks." We actually get a week off and that is super news for Karina.

I must say that her skin does look very good. The only thing that Dwight and I are doing to protect her is keeping her inside, completely covered, out of the sun or even sun rays, sun block inside and praying faithfully. We give God all the glory for this miraculous healing of Karina's skin.

The boys are back in school and loving it. They have been treated to good teachers whom they are both fond of. Torin eagerly gets on the bus and I sadly come into a house that is missing a little person playing Legos, pirates, dress up, Indians and constantly gibber jabbering in my ear. Karina is very quiet but enjoying a few hours with just the house to ourselves.

Karina celebrated her 7th birthday on Monday, Labor Day. She had a nice day with the family but the real celebration was all weekend. Our dear friends the Bonavita's came for the weekend (from Ohio) to visit and help us celebrate. We managed to enjoy each others company and keep Karina safe from too many germs. We love this family and they reminded us of how special friends have encouraged us along this tough journey. You can see the kids in the photo album.

Karina's blood pressure remains too high. Her blood sugar levels are coming down but not enough to be off insulin. She continues to tolerate the shots and finger pricks. Karina is ready to begin school work and is determined to press on with second grade school work. The school is in limbo as to first or second grade.

We are seeing "life" in Karina as she is emerging from her steroid cocoon. Her personality is shining through, moods are up and down and she knows that she is getting better. We feel so encouraged that her skin is looking healthy and she is too. We have a long road to wean these drugs but are thankful to be taking baby steps in that direction.

I have not written about our other friends who are also battling cancer in a long time. Tonight I felt tentative to share our good news when our precious friend Mitch is suffering. This is a family that we grew to know and love in OK City. His website is www.gomitchgo.com. You will be inspired by his family’s faith in our Almighty God! Please pray for him. Some other friends are Kate, Taylor, Brian, Mallory, Lane, Bryan, William and Annabel.

Please know that your prayers are being answered as we see Karina begin to heal.

New photos!

Blessings,
Dana

Thursday, August 30, 2007 8:03 AM CDT

Karina's apt went well on Tuesday. They lowered her steroids again which we are so pleased about. There are still questions regarding the further weaning process of the steroids as well as all the other immunosuppressive and the timing. As you can imagine we are very eager to do it as fast and safe as possible. There are many months ahead of us to wait and watch as Karina's body and skin respond to the reductions. We are praying specifically for her health. The extensive time that her body has been at risk for infection has been approaching a year. It is very hard to keep her healthy, germs away, isolation for her and indirectly the family. The boys return to school next week and this also brings many extra germs into our house. We pray that her immune system will be strong enough to face the winter cold and flu season. As you can see, I am preparing for the future. Daily, our prayer is for her neurological system to begin repairing. Her sweet personality is returning by the minute after the blood pressure patches have been gone for one week now. Her blood pressure has been high the past few days to which we respond with a quick acting liquid medication. She seems to be feeling well. We have new physical and occupational therapist beginning next week. She is excited about new faces and we are excited about new "energy" and ideas they may bring. Her therapists to this point have been outstanding in their work has been faithful to Karina. We are grateful for them.

Please continue to pray for Karina as she "feels" the steroid reduction, knows that she is getting better and for her to be patient with us. I told the doctor that she has sacrificed too much has been required to be too patient and needs to return to normal life.

A home bound studies teacher is being selected in the next couple of weeks for her and we are prayerful about the perfect person for Karina.

Thank you for your prayers that are so confidently lifted to our Heavenly Father. Years ago, I found a wooden sign for our home that simply says "Believe" and we do.


I have posted new photos.


Blessings,

Dana

Monday, August 27, 2007 9:00 PM CDT

The kids and I were able to sneak away for the past 5 days to Williamsburg to visit my parents, grandparents, sister and her family. It was a wonderful trip with time to relax for all of us, mommy time, fishing time for the boys, shopping, eating restaurant food for Karina, playing with their cousins, special lunch at Aunt Debbie's etc.....We felt totally pampered and come home relaxed. We are grateful for our parents and family that live close by so we can enjoy them.

Dwight took the boys to Williamsport, PA for the Little League World Series this weekend. They had a wonderful time and will plan a longer visit next year.

Karina has returned to her old self. The blood pressure patches that she was wearing are off and the bad side effects are gone too. Her pressure is slowly coming down as the steroids come down. Her sweet personality has returned and the twinkle in her eyes as well. She is more talkative and just perky! We love to hear what comes out of her mouth............often times very funny.

Karina's skin is looking good and we are pleased. It is a miracle to see her skin remain unchanged this week with the lower dose of steroids. We are praying for the dose to be reduced again tomorrow. I will write and let you know. Please know that our prayers are being answered as Karina's body heals. She has a very serious amount of weight to lose. Karina's blood sugar is showing slight improvement as well. Praise God for this ray of light that is shining down on Karina. She is encouraged!

We head to Children's tomorrow and no other apts this week. The boys started baseball practice this week and our schedules have gotten a bit hectic. They are on different teams this season and have both gotten good coaches. This is such a great outlet for the boys to dive into their passion. Karina enjoys watching and getting out of the house to cheer them on.

Your prayers, love, support, mail and encouragement are helping run this race. We daily pray for God's blessing on Karina, his will for each of our lives and for our eyes and hearts to be open to His plan.

Blessings,
Dana

Saturday, August 18, 2007 9:28 PM CDT

Karina's skin remains unchanged maybe even showing some improvement. This is good. We are praying that the steroids will adjust to the lower dose and allow her skin to clear in the next few weeks.

Interestingly, Karina's appetite has increased the past few days. She really does not need to gain any weight as she is about 25 pounds overweight as it is. The extra weight is a burden to her very fatigued body. Food does seem to please her and keep her "steroid moods" to a minimum. She is just like her mom, but I am not on steroids!

Today, Karina seemed down to us. She has not been out of the house much the past few days so we headed out. When we arrived home, she was very sad. I asked her what was wrong and she said she wants to walk again and she is tired of taking all the pills. I got on my knees so I could see her face and eyes to tell her all that I know. I prayed silently to God for the words to say because Dwight and I really don't know what the future holds. I told her that the pills will go away in the next few months, and then her body and brain will begin to heal. Her ability to walk again is largely dependent on her. Her muscles are all still there and need to be reworked/retrained. I told her that it is going to be a lot of work for her and that we (Dwight, I and her therapists) are all here to help her. I told her not to give up, know that God is in control of all of this and one day we will look back and say, "Remember when you could not do this and now look how far you have come." I told her that through her illness many people are coming to know Christ's love, are reading and believing the Bible, praying faithfully and seeing prayers answered. She agreed to continue to be brave, courageous, faithful in prayer for her healing and work hard on walking and school work. I told her that her mind is a gift from God and she has a choice to make everyday regarding her attitude for the day. Her mind is a tool and its battery pack is her heart. I encouraged her to use her mind to learn and not worry about what her body is not doing right now. We all love her for who she is. She took this all in with a very serious look on her face. Please pray with me that Karina knows Christ's love for her and finds comfort when in pain, peace when in doubt, courage when scared, contentment in all circumstances and joy where there is sadness.

Thank you, friends, for signing the guestbook. We are grateful for your prayers.

Blessings,
Dana

Wednesday, August 15, 2007 8:38 PM CDT

Karina is in good spirits after a very tired day on Monday. Tuesday we went to a satellite office to see our favorite Neurologist and she enjoyed seeing Karina. Her report basically says that Karina will not begin to heal neurologically or physically until she is off steroids. This is information that we knew and will have to continue to wait for. We then headed into DC to Children's for her regular apt.

Karina skin is showing signs of GVHD and we are watching it very closely this next week and applying pounds of steroid cream to the affected areas. The rash is on her trunk area and seems to be no where else. It is itchy which tells us that it is GVHD. The doctor said let's wait and watch before making any decisions. I feel that it is stable the past few days and am praying that it does not spread. The plan is to leave the steroid alone for a few weeks and let her body get used to the lower dose.

Today Karina received an autographed post card from Cinderella, Belle and Snow White and I have never heard her squeal so loud. She absolutely "popped" with excitement. (Allison, she actually recognized your handwriting and said who it was from before opening the package.......sharp cookie she is!) Thank you all for remembering Karina in big and small ways. The cards to communicate with her are tangible things that she loves. I tell her over and over that you all are praying for her, even those of you who have never met her and do not know her but feel God calling you to pray.

I want to give a quick plea for anyone who can to go and give blood and platelets. There is a serious shortage and it would truly be giving the gift of life! Thank you. Karina received many units to her name when we lived in Oklahoma and we are grateful. You may give in her honor but it is not necessary. We pray she never needs the 186 units to her name. If I have not mentioned Altus lately, YOU ROCK!

Dwight and I have recently discussed a deeper level of faith that we are reaching. God continues to move mountains of thoughts in our hearts and minds that are filled doubt, fear, sadness and grief. He is replacing them with peace, joy, promise, love and comfort. Thank you for praying for Karina. I wish we could jump into Karina's mind and sort out all the questions she must have, but for now, Jesus Christ lives in her heart and he must be taking care of those details for us. She never asks why, how long, what if, can I, why can't I etc......... God is protecting her heart and mind from worldly thoughts and replacing them with contentment, faith, hope and trust.

Blessings,

Dana

Sunday, August 12, 2007 8:25 PM CDT

Friday's apt was informative and offered hope for the near future for Karina. The results of her spinal tap just before vacation show no further infection, no proteins and no bad white blood cells in her spinal fluid. Several tests on the spinal fluid are still pending and will take some time to know more since they have been sent to laboratories across the US. No news is good news on those in my book.

With these good results the doctor can not explain the "brighter" spots in Karina's brain on the last MRI. What does matter to the doctors is her clinical progress. In their eyes, they see progress as we do in certain areas such as fewer tremors, stable eye movements, cognitively intact, normal tone of voice and alertness. In other areas they do not see. We see decline. Karina has tremendous weakness in her entire body and struggles more now to walk than before. The steroids are contributing to this weakness. We pray that over time, Karina will regain strength and the desire to walk again.

The good news is that they reduced her dose again this week. We are thrilled with this and Karina's skin seems to be tolerating the lower dose pretty well. Dwight and I watch her skin like hawks and this daily past time can really drive us crazy. The doctor says not to stress on it but to watch it week by week, not daily. Easier said than done.

Karina's primary doctor and chief of the bone marrow/transplant department (Dr. Kamani) has moved on to another position within the hospital and Karina's new doctor is Dr. Perez. He was the doctor on at the time of her actual transplant. Karina has not one fuzzy warm feeling for this doctor the way she loves Dr. Kamani but Dr. Perez is extremely smart and a great doctor. Apts have become a bit more interesting.


Our apt with Nephrology went well. Karina's blood pressure when we walked in was 111//80. Beautiful, huh? Go figure the luck of that. Unfortunately, that is no where as low as she is at home. They prescribed 3 different meds for Karina and we will see how that goes.

I did learn that one of the blood pressure meds causes a flat affect and lethargy. I had just told the doctor those symptoms an hour earlier at our apt. At least we know why.


This week we head back to Children's for a neurology apt and regular clinic apt. Days are so long for Karina with the traffic and lengthy apts. She has shown some sadness and fatigue with taking so many pills each day and getting 4 shots a day. Her blood sugars are coming down and her diet is very good to comply with keeping the levels low.

She has earned more Disney Bucks from her daddy for all the shots and he is hoping the diabetes goes away real soon. She is excited to shop tomorrow, online.

Thank you for praying, emails and the wonderful cards for Karina. The boys are doing well. Thank you for the heartfelt messages on the guestbook. We love and miss you, friends, and cherish the words of encouragement.


There are new photos!

Blessings,

Dana

Thursday, August 9, 2007 8:33 PM CDT

It has been over a week since our last update on Karina. I apologize for not updating before we left for vacation. We were able to leave, on last minute notice, for the beach for the week. Until the day before, we were unsure if Karina would be able to go or if she would be at NIH getting treatment for her skin.

A brief update on Karina:

The week at NIH was exhausting but informative. Karina's GVHD is not severe enough for ECP right now. We can not rule out this treatment in the future if her skin flares again. The dermatologist feels that the redness is from an antifungal drug, not all GVHD. We changed antifungal and also reduced steroids by 5 mg per day, from 50 to 45. Still allot for a 6 year old, but off to a good start. Her skin looks good, no worse. Very important for our doctor visit tomorrow.

Karina remains on insulin shots for diabetes. This is a side effect of steroids. She gets 4 shots a day and tolerates them well.

Karina's blood pressure is high and not under control with 3 meds. Also a nasty side effect of steroids. Tomorrow we will see a renal doctor at Children's.

Karina remains on entirely too many medications and we are praying for changes soon. Karina's thyroid is showing under active and she will add yet another drug to boost her thyroid production. This does not come as a surprise to us as we knew that the total body radiation she received before her transplant would most likely "kill" her thyroid. This should actually boost her energy and metabolism. She will probably need medicine for the rest of her life for her thyroid. We can surely live with that!

Our week at the beach was so enjoyable, but also bitter sweet. Karina has to remain inside or out of any sunlight because of the hypersensitivity her skin has to sun. She took lots of car ride, long sleeves, sun shades pulled on the car windows, sun hat on, sun block on etc.........not anyway for a 6 year old to spend a well earned vacation.

The week was so special and provided to us by a non profit company for families with children with a life threatening illness. They made Karina feel so special and lined the boys up for many fun activities throughout the week. Karina was so quiet this week, in good spirits but solemn. She does not complain of feeling bad or hurting in any way. Dwight and I listed about 10 significant things that she could be worried about or bothered by. Basically every aspect of her life and health. We struggle to find any normalcy for her. She continues to enjoy school work and helping me in the kitchen. She is very reconditioned and is winded with even a short walk in the house.

Please pray that her skin heals so we can get rid of the awful steroids. Her live and health can not go on until these are gone. Once this happens, the doctor will start to remove other drugs. This feels like a million years away for our family. We don't know what Karina thinks but we pray that God is guarding her heart and mind.

WE LOVE YOU ALL and cherish your prayers. Please continue to be on your knees praying to the God who can carry us through this storm. We are praying for peace, guidance, healing and endurance at the Sones household.

Blessings,

Dana

Tuesday, July 31, 2007 8:21 PM CDT

We are weary but thankful for a full day of doctor exams complete at NIH.

Karina's blood work came back with improvements in all areas. Her white cells are back down very low and in good shape.

Karina's CT scan today of her lungs show no more bacterial spots but a significant spot of pneumonia or some infection. We just can't win this battle with the lungs. The GVHD doctor wants to do a lung biopsy. I will know more tomorrow.

Karina had a good and surprising visit at the NIH GVHD dermatologist office today. The doctor she saw is considered the best in the US for skin involvement GVHD. He feels (as well as two of his colleagues) that Karina's red skin is not all GVHD but rather a photo sensitivity caused by the antifungal drug she has been on since her transplant.............10 months worth. Shocked is an understatement. Cousin Robin was with me for this great news and I almost cried. This is not the answer to all the problems but significant! Karina still has GVHD but not enough to warrant the ECP treatment we were headed towards. That is not to say that she will never need ECP but not right now.

The doctors will give us more information tomorrow and into the end of the week. We are headed in the right direction.

I am unsure where I left off with the results of Karina's last MRI. We got bad news in that area. The cerebellum is further inflamed and now there is ventricle inflammation as well. This tells the doctors that there is infection continuing to attack the central nervous system. They are unsure what this is. On Thursday, we will head to Children's for a spinal tap and doctor visit with Dr. Packer, the head doctor of Neurology.

We are in the middle of the teeter totter and unsure what direction it is about to rod. Karina has major issues in three parts of her body. Her brain, lungs and skin.


Please pray for a miracle! We need answers, healing, accurate and less medication. How can we do this and save Karina, save her skin and joints from permanent damage.

She is an object of medical study, research, medications, survival all mixed in one. We need to pray for Karina's mental wellbeing as well. She is compliant and I often wonder if this is now her way of life or is she just too tired to fight the doctors.


Karina's medical puzzle is all mixed up and only God can sort out the pieces. We are praising HIM in this storm. God is who He is no matter where I am. Listen closely to that song next time you have a Christian radio station on.

Please pray for accurate diagnosis and care for Karina as there are many hands/specialists involved now. Praise God for the ability to drive to these hospitals and receive the BEST CARE AVAILABLE for Karina.

God is so good.

Blessings,
Dana

Sunday, July 29, 2007 8:50 PM CDT

Dear Family and Friends,

I wish no news was good news but in the case of the Sones house, we have had computer trouble this week.

Here is a summary of Karina over the past week.

We spent a day at Children's doing a pulmonary function test to which Karina cooperated but did not do so well. We then waited a few hours for an MRI of her brain. The results showed slightly more inflammation of the cerebellum which we are all baffled by. We are waiting for Neurology to read and interpret the results and give us information on why this is not healing.

We spent Tuesday at NIH for the beginning of Karina's evaluation to be accepted into their longevity study for GVHD and hopefully a candidate for the ECP (blood phoresis to get her off steroids and allow her "baby blood" and immune system to be comfortable in her body. The schedule to complete the NIH evaluations will be this coming Tuesday and Wednesday. The traffic and exams are very long and tiring for Karina. Please pray that can tolerate and cooperate this week. She was unable to lay flat on her back for the bone density scan as this makes her feel sick and very afraid (a neurological side effect from the virus back in March). Then on Thursday, Children's called and asked to see Karina in endocrinology to start her on insulin. She now has steroid induced diabetes. We are checking her blood sugar 3 times a day and giving insulin shots 4 times a day. Karina’s blood pressure has been very high and this has happened in the past week. We are unsure why but we have changed medicine and are praying that it stabilizes soon.

The week has been filled with trials, fears, sadness, questions just too many to mention. Karina is very lethargic, tired, quiet, and cooperative with her new diet restrictions and shots. We have leaned heavily on knowing that God has this all figured out for us. We need to continually lean on him, live for him and love him! We pray that Karina knows that God loves her. She is so very sweet and to look deep in her eyes is so painful. She must be so confused. She continues to take her pills and reminds me when I forget ANYTHIHG having to do with her health.

We struggle with the protocol/medication/side effects that Karina is currently undergoing. We feel trapped between a rock and a hard place with no where to turn. Please pray for Karina's precious body to hold out a little longer to slowly get her off the steroids. MANY of the side effects will disappear when that happens.

Karina is so grossly over weight that she struggles to walk more than a short distance. She can hardly lift her leg to get up the stairs. Her body is being maxed in every aspect. Please just pray for her and our family.

That is the big picture of this past week. I will write more as we get through the next tough days of exams at NIH.

Please know that we cherish and covet your prayers.

Blessings,

Dana

Saturday, July 21, 2007 9:25 PM CDT

Karina is coasting along about the same. The doctor’s office called yesterday and they decided to once again up both immunosuppressive drugs. These are each monitored through her blood and when the therapeutic level is not high enough, they consider in ineffective and up the dose. They also added a "water pill" to get rid of some excess fluid build up. We could not get Karina's shoes on the past few days and we hope that this pill helps.

Karina is now battling high blood sugar and high blood pressure from the long term steroid use. These side effects should go away after the steroids are weaned. When that will be we don't know.

The next two weeks should hold many answers for Karina's treatment of GVHD. She has her first apt at NIH on Monday. Tuesday she has a full day with an MRI back at Children's. She will be sedated for this as they are looking at her brain again to see if the cerebellum shows inflammation.

The following week, Karina has apts at NIH 3 or 4 days, which I was told would be all on one day. I am a bit frustrated with the scheduling situation and will see about having it changed.

Please pray that Karina’s body holds out for the testing coming up and that she can be accepted for the extra corporeal photo phoresis and we can get off the steroids soon. Please pray for Karina to begin to work independently at home on projects and school work as her drive is gone. She will only work if someone is right next to her and that is not possible for me all the time.

Tonight, Dwight and I had a party here at the house to celebrate his promotion. We sent the kids to Dwight's parents (20 minutes up the road) for a pizza/movie night and sleep over. They were excited to go and I am sure having a super time. This allowed us to have friends in the house and we so enjoyed ourselves. We miss the fellowship of friends so much and feel that we had a shot in the arm of encouragement by the presence of special friends. It was special to see friends from many years ago who have supported our family from many past assignments and growing up.

Off to bed to get ready for another busy week. Just as I say I am ready for fewer doctors and less medicine...........it goes the other way. Please pray for my patience with Karina and the endless medical tests coming up. I miss the time with the boys and being home when we are gone so much. The boys seem to be doing well. I can do all things through Christ who strengthens me!

Blessings,
Dana

Tuesday, July 17, 2007 9:01 PM CDT

We are home and Karina is doing well. Sorry for the delay in information but we had a very important mission when we left the hospital on Sat late afternoon. We had been planning our first weekend away (since Karina's virus in late Feb) at my parents in Williamsburg before Karina got sick last week so we decided to make it a quick trip instead. Karina and I repacked our suitcases on Sat evening and left Sunday morning to visit my parents, grandparents and sister and family. We just stayed on night but it was so refreshing to be somewhere else and doing something else besides going back and forth to Children's. We came home last night with the boys and all slept very well in our own beds. The boys had been there since last Wed having a wonderful time. They did a lot of fishing and playing with their cousins. So much fun for them.

Karina was released after two negative cultures for the gram positive that was found in her blood. She seemed to be back to herself just today. She remains very quiet and gets very tired by 6 pm and is in bed early each night. Her new PICC line is working well and she has a huge ugly bruise from the procedure. Her skin tone is MUCH BETTER THE PAST FEW DAYS! Praise God for answered prayer. We went to Children's today and they are not going to reduce her steroids until she is done with her evaluation at NIH and possible ECP procedure. She is scheduled for the medical evaluations July 23 and 31 which will be all day pocking and prodding. We will then learn if she is a candidate.

Karina continues to gain weight from the steroids and is just huge all over. Her body looks like it can't take much more. Her blood pressure and blood sugars are both very high. The doctors say just be patient a bit longer to hear about the ECP. I shared with them that her health and medication levels are far beyond my comfort level. They understand but she is also their patient not their parent. Her blood counts today are doing okay and she did not need any transfusions. I think she is on the mend and will not need any for a long time.

We are asking for God to protect her precious body from serious long term harm. Her organs and bone density are so close to serious damage and the future holds the damage. We just pray for today and let God to take care of the rest.

Karina is just so sweet. We saw her famous Karina smile today that was "real". Braydin talks about Karina about when she was not sick and Torin refers to the old Karina as when she was not on treatment. They both are so kind, never complaining about our family situation, gentle to her and accepting.

Thank you for praying for Karina. She is precious in God's sight. Please pray for my eyes to see Karina as she is today with great hope for her future rather than mourn the loss of who Karina was and what she used to look like. Seeing photos from a few months ago is more than I can bear. Instead I am focused on her cocoon transforming into a butterfly.

Blessings,
Dana

Thursday, July 12, 2007 5:18 PM CDT

Dear Family and Friends,

Here is an update on our family and Karina. Monday, Torin got his cast off after 7 weeks and his arm is healing nicely. The ulna bone is not fully healed and he is on fall precautions and no bike riding, scootering or skate boarding for a few more weeks. He will have it re-XRayed at the end of the month.

Tuesday, we came to Children's for Karina's weekly apt and all went fine. She did not need platelets and her counts were okay.

Wednesday she woke up not feeling well and by mid morning she had a fever. We brought her in for blood work and her white count was off the charts and the doctor decided to keep her for full round the clock antibiotics. We were admitted yesterday afternoon. The fever has not been back since yesterday at noon, but the blood cultures show that she has gram negative growing in her blood. For a child with no immune system, anything growing in her blood is very dangerous. We have had this once before back in April and it was determined that it was growing in/from her broviac. This time they feel the source may be her PIC line so they removed it yesterday.

Today Karina remains in very good spirits sitting in her stroller, participating in PT and dealing with a problem IV in her hand. She had another blood draw this afternoon to see if the antibiotics have killed off the gram negative. If her blood is clear of infection tomorrow, she will receive another PIC line (sedated for a short period of time and placed in her in the radiology dept). The doctor will determine the best antibiotic that the gram negative is sensitive to and send us home on that for 10-14 days.

Karina was scheduled for a follow up CT scan to see if her lungs are still clear of fungus. The results show spots on her lungs and one larger and possibly collapsed section. The doctor and radiologist do not think it is fungus but probably bacteria from the infection. Karina has no symptoms of fungus like she did before a few months ago.

My parents took the boys to Williamsburg for the rest of the week as Karina and I drove off to the hospital. Harsh reality for Karina but very special time for her and I in our windowless little bone marrow hospital room. The nurses are all so pleasant and we enjoy catching up with everyone here at Children's. We have not been inpatient in 3 months. Maybe the longest stretch since she was diagnosed in Feb of 05.

Somehow over the past 3 months I forgot all the familiar sounds and smells of the hospital. We hope to go home late tomorrow evening. For that to happen, the cultures need to come back clear of bacteria, the PIC line needs to be placed and the proper antibiotic needs to be determined to treat her. We pray that all of this happens to go home for a relaxing weekend.

God has shown us again His presence through all of this. He has protected Karina from serious sickness, allowed the boys time with my parents, allowed the boys much needed fun with their cousins seeing and doing new things, allowed Kairna and I quiet time alone to stop and reflect on the blessings and protection God has provided, Dwight peace regarding his job and much needed great news this week!

Thank you all for checking in and wrapping us with your arms of love through your words. Your friendships truly help us face tomorrow. We love each of you and you'll probably never know how much you encourage us. Thank you for being YOU, for believing in prayer and supporting our family.

Blessings,

Dana

Friday, July 6, 2007 9:34 PM CDT

I wanted to give you all a quick update. We spoke with Children's today in regards to the referral to NIH. They will not be able to see Karina until the first week of August. This was initially very disappointing news as our doctor thought they would see her within a week to ten days, not a month. Dwight and I quickly decided that this may be good news. We feel that we have a touch more time for a couple of reasons. The first is more time to pray for a miracle for Karina's skin to heal, also that we can do more research and consider a second opinion. God is in control and we believe that He hears each of our prayers and will answer them in time.

Dwight and I are daily finding ways to accept that the temporary disabilities of Karina and circumstances of her condition may not be temporary. We find ourselves emotionally anguished to look at Karina's precious body, hear her slow speech, inability to hold a pencil, paralyzed in her own mind as her desires are impossible to make reality. We see a child that has been on prednisone for 9 months and hear stories of adults that struggle to be on it for 9 days. What Karina feels inside we will never know. Yet, daily she makes a choice to be pleasant which is totally learned behavior. Her mind and body are not happy when she wakes up until we have a "daily talk about choices". Karina is God's angel living in our house to remind the rest of us how much we have to be thankful for.

Torin woke up a few days ago and said, "Mommy, I had a dream just now that Karina could get up and walk." He daily asks when Karina will be able to walk again. Braydin says, "I sure wish Karina could come out and play with us."

The minute my sinful mind gets tired of "doing" for Karina my heart thanks God for every minute with her. Today we painted clay pots and played cards sitting on the carpet. That is a big step for Karina. Her back muscles seem to be getting very week so we have encouraged her to walk more and sit on other sits besides the stroller. Karina made a great effort today to walk with me just holding her hands from behind. This is such an improvement for her to keep her balance and have the confidence to try. Karina still feels very sick and dizzy to hold her head upright. She drops it down and forward all the time and we are praying that this feeling goes away as the cerebellum heals.

She had a wonderful Fourth of July celebrating with our neighbors until way late into the evening. A new nurse came this week and discovered a very raw and infected area around her IV site. This was a very dangerous situation and I praised the nurse for tackling it and Karina's fears to snip sutures and fix the problem. It is healing slowly. Braydin has swimmers ear and will be out of the water for the next 10 days. Always something brewing at the Sones house these days. Dwight is officially working at the Pentagon and doing great.

Thank you for giving us strength to carry on. Thank you for faithfully praying and believing in the power of prayer as we do. We cherish each message written in the guest book as if you just stopped by and chatted with us. Daily life for us holds heavy burdens and we continue to give those to our heavenly father who can carry them far better than we can.

Blessings,

Dana

Monday, July 2, 2007 8:48 PM CDT

Dear family and friends,

Our week at the lake was simply wonderful. Our precious friends, Dan and Mary, generously offered their new home for our family to rest and relax. We did just that and it was a week filled with beauty around us. The weather was good for outdoor activities. It was a tough week for Karina because she was not able to be outside in the sun and heat with her skin condition. Dwight snuck in a few jet sky rides after the heat of the day with Karina which she loved. The smile on her face was pure joy.

We returned home Sat. evening in time to attend a long time friend’s retirement party. It was so nice to go out with Dwight and celebrate old friendships and a great Air Force career. Congrats Randy!

Yesterday was filled with unpacking and getting back into the swing of things here at home. Dwight is now at his new job at the Pentagon. The challenge for him is not learning a new job but learning how to beat the traffic in DC while squeezing in a good workout, working and having enough time to play ball with the boys in the evening. Days for Dwight will be very full for the next two years. I write with tongue in cheek but please pray that the transition for Dwight and our family is smooth.

Today Karina and I spent the day at Children's. Karina had two bloody noses while we were at the lake and we knew that her platelets were low. They dipped very low today and she needed a transfusion. That went well but took 3 extra hours at the hospital that we were not expecting. Dad Sones came early this morning to watch the boys and went with the flow for the rest of the day. Braydin and Torin love their Bubba and his mystery stories about pirates and Indians. They had a fun day together.

Karina saw two bone marrow doctors today and they both agreed that her skin is improving but not healed after the high dose steroids. They feel that the work of the high dose steroids is done, essentially, and now we need to attack from yet another angle. They are referring her to NIH (National Institutes of Health) in Bethesda, MD for a clinical trial. We will go for two full days of medical exams, tests and evaluations to see if she qualifies for their study. If so, then she will undergo a treatment plan that will last the next several months. The process is called Extracorporeal Photopheresis. It runs her blood through her and then through a machine that has a light that deactivates (essentially) the lymphocytes, introduces a drug and places her blood back in her. The machine is set up for adults and it is a big question if she meets their kilogram limit.

This is a big decision for all involved. By going to NIH, we will be receiving several second opinions from a variety of doctors, one of which is the leading dermatologist in the nation for GVHD. Please pray for Karina as she would have to tolerate this extensive treatment for 2-3 days a week for the next 3 months, for the doctors making the decisions, for her fragile body to accept the treatment, for my patience, peace, energy and time involved. There are many aspects of this that make us uneasy but we are praying faithfully that God provides us with all the knowledge and peace we need to move ahead.

It would be so miraculous to see God heal Karina's skin before we have to try more aggressive treatment. He can if that is His plan and if not we will faithfully follow as He leads.

Thank you for checking in and praying so faithfully. We are all running this race together and we pray for the Glory of God!


New photos!!



Blessings,

Dana

Sunday, June 24, 2007 7:30 PM CDT

Dear Family and Friends,

Karina completed 3 days of high dose steroids (Thurs, Fri, and Sat) just fine. I know that she did not feel well but seemed to hold it together for the three days. She is very tired but in good spirits. I don't know how she continues to go to Children's over and over and know that what is to come is not pleasant. She simply does not seem to remember life before cancer and treatment. Praise God for providing her volumes of courage and contentment in all circumstances. We pray that she continues to live with peace in her heart.

We received a wonderful surprise call from an old friend and what a treat to spend yesterday with him. Thanks Barre for taking the time to be with our family. The last time we saw Barre, was the day we brought Karina home from the hospital after she was diagnosed with Leukemia. We had a wonderful weekend.

We will be at the lake for the next week with our families. We have the week off from Children's and are hoping that Karina finds the vacation fun and restful. Please pray that Karina remains healthy as we will be around other people while her immune system is going to be very suppressed. The high dose steroids killed off nearly all of her lymphocytes. She has no defense and we pray that she remains fever free and healthy.

We are patiently waiting for changes in Karina's skin. The doctor said it may take 5 or 6 days before we see changes. We think there are slight changes already, but we do have optimistic eyes too! We so need this to work for Karina and heal her body of the GVHD. She needs to be weaned off the oral steroids and then off immunosuppressive.

This weekend Karina had her Make a Wish interview. She was approved for a wish back in OK but we felt that she was too young to make a decision, it was too early into treatment and we wanted her to be mature enough to understand the generosity of such a gift. Kairna has wished for a trip to Disney World. We will wait to see if it is approved and then select a "rubber" date. Karina will not be able to travel until late fall or winter which will be better temperature wise as well.

We will write after we get home. I have posted new photos. Thank you so much to each of you who pray so faithfully. When we are not praying we know that many of you are on our behalf. We no longer look back at who Karina was, but eagerly anticipate who God is creating daily for her future. Living with Karina is like living with an angel. She peacefully watches her day go by doing a little of this and that never complaining that she can't do something. Contentment blankets her being. We love every day with her!

Blessings,

Dana

Thursday, June 21, 2007 8:51 PM CDT

Dear Family and Friends,

Today we were to report to the doctor the condition of Karina's skin. IF there were no improvements then they wanted to see her and take the next course of action. Karina's skin remains very red mostly on her face, arms and hands. The lower dose of steroids that she has been on for a week is not holding the GVHD at bay.

We headed into Children's late morning and after a lengthy discussion with her doctor, decided that we needed to attack the GVHD with high dose steroids given to her IV over one hour for the next 3 days. She tolerated it but did not feel well about half way through the infusion and did not feel better until around bedtime tonight.

She is simply amazing to me. She knew that she was in for more medicine, never asked questions, never complained, remained pleasant even when she felt awful. God is providing her amazing strength, courage, bravery, patience and endurance. She is a precious child and just seeing her sweet smile tucked behind a very puffy face brightens the darkest of days. She encourages us to continue this race on her behalf to make wise decisions about her care. Dwight thanked her today for totally trusting us to take care of her and even though some of the medicines are awful, we (and the doctors) are doing our best to help her get better.

Tomorrow we will go in for more of steroids and I pray the accumulation of a second day does not leave her feeling worse. Saturday she will receive another as well as the drug she has been receiving for the past 2 months to try and help the GVHD.

Many times a day as I am helping Karina I see a photo hanging in our bathroom that says, "Faith is being sure of what you hope for and certain of what you cannot see." Hebrews 11:1. I often look around my house at the perfect location that my parents hung each picture in our house. (Karina and I were in the hospital when we moved in).

Please keep praying for Karina and her complete healing.

Blessings,

Dana

Monday, June 18, 2007 9:49 PM CDT

Dear Family and Friends,

Let's keep praying! That is the message in our minds as we listened to the neurologist report on Karina after he evaluated her today. Can a parent say that they feel honored to visit a very well known and experienced neurologist? We felt that today but we would sure rather say that we didn't! Dr. Packer closely evaluated Karina, her past medical history, reviewed her past MRI's and previous neurology reports. He feels that Karina's cerebellitis (inflammation of the cerebellum) is from a two fold cause, most likely.

I need to refresh you all on Karina's treatment for leukemia from Feb 05 to June 06. A part of the chemotherapy protocol for leukemia involves injecting chemotherapy into the spinal fluid. This is called interthecal chemotherapy and the medication used was methotrexate. The purpose of this was to protect the spinal fluid from developing cancerous leukemia cells. The spinal fluid is a place that cancer cells could hide out. Karina never had cancer cells in her spinal fluid even after relapse but required the treatment anyway.

The cerebral spinal fluid bathes your spinal cord as well as runs through the ventricles in the brain. There were risks of brain damage with this form of chemotherapy but a necessary risk that we did not have a choice about. Today, Dr. Packer suggested that the methotrexate may have damages the brain and left her susceptible. When the virus hit, the weak cerebellum may have taken the hit. This explanation is purely in my words and to my understanding.

The doctor felt that her care from the beginning of the virus the end of Feb was accurately followed and treated. He said there is/was no medication or treatment that should have been given or would be given now. That made us feel at ease freeing our minds of question or guilt that something more could have been done.

The good news is that he feels that her healing is not finished! Good, because God isn't finished with her yet! The doctor said that we need to continue to be patient, continue therapy, and continue walking with Karina and wait! We did not tell him that we are waiting on God's healing in His time, but maybe we will on the next visit. He thinks that the next few months should allow her more healing and increased balance for walking and fine motor skills.

It only takes five minutes with a friend at the ball park to remind me that when baseball season began, Karina was still very sick and now look! Time seems to go by faster for others looking from the outside where Dwight and I see the minute by minute. Thanks Robin for the continual encouragement.

Karina also went to the clinic today for a checkup. Her skin is too red on her arms and face. She definitely has a suntan but not on purpose. We are learning that her skin is so very sensitive that she may be getting sun rays in our own house, through the tinted car windows and sitting under large shade trees. We are going to now dress her in long sleeve shirts and larger hats and keep her totally inside to avoid any sun exposure. Outside was the only place we could go and feel germ free so now we have to buckle down, dig out the games and cards and get rid of the red skin.

I just got back from the pharmacy picking up more steroid cream, aloe gel etc.............

I feel a great sense of peace about Karina as God, once again, has this all in his plan. He knew long ago that Karina would have this disability which means he also knows for how long too! We will continue to work hard to help her, be thankful for every day we have Karina to love, tell others that God is in control and loves Karina more than we can. Unfathomably!

Thank you for praying!

Blessings,
Dana

Tuesday, June 12, 2007 9:28 PM CDT

Dear Family and Friends,

As Dwight and I often say in our household, “we are ready with our guns loaded!" For those of you who know that Dwight is an avid hunter, don't get scared. We say this when we feel strongly that we need to present something to the doctors. Our hearts have been so heavy about Karina and her medications, especially the high steroid doses the past 2 months. We do understand medically the need but sometimes we need further explanation. :) God lays these feelings on our hearts very purposefully and we feel that He also gives us the words to say, the mind to comprehend and the acceptance of things that are very hard to accept.

Karina's steroids were finally lowered today. The dose went down by 20% which is a good start. She was excited and we will keep them here for the next week or two and then lower again. We feel that God has answered prayer for us today. We needed hope for today and we are not asked to worry about tomorrow. We all felt encouraged to see her skin improving and the doctor agreeing.

Karina has had a stomach ache all afternoon and we are wondering if is from the IV dose of medicine she received today. She did not complain a lot but also ate no dinner. She ate enough lunch for dinner so we are not worried. Steroids increase her appetite 10 fold and in a couple of months she won't eat enough to keep a bird alive. She must get tired of eating in excess as she is doing now. If this does not leave to an eating disorder down the road?...............Just kidding.


Thank you for praying for our family and encouraging us daily. The journey is so long to us, but yet you all stick close day in and day out. We cherish each word you write, phone call you make and card you send. We feel lonely at times.............all of for a minute:). You all are never far away and neither is God.

Blessings,

Dana

Saturday, June 9, 2007 8:52 PM CDT

Dear Family and Friends,

This has been a wonderful week as Dwight graduated from the National Defense University on Thursday. The day was so enjoyable as graduation took place under a huge tent on the beautiful grounds of Fort Mc Nair. It is another year of school for Dwight, another masters, another diploma, another year of making close friends etc..........but it was not just another year in the Sones household. Dwight balanced Karina's transplant, extensive hospital stays, repeated illnesses, sleeping in the hospital, disrupted nights sleeps here at home, playing with the boys, taking care of me emotionally :) etc.............all while attending school. He would not tell you, but I will tell you that he has worked so very hard this past year giving 100% to school and to our family. Dwight knows how to put Dwight on the back burner very well and the rest of us on the front burner. He is wise, caring, generous, patient and loving under great stress. I would have been fired long ago from my job, if I had one!! Dwight is a man of character, energy and loyalty (to his family and the Air Force). I am immensely proud of him!


Karina's apt on Tuesday was pretty much like the past month. She received an infusion of the drug trying desperately to help the GVHD. She tolerates it well and we come home feeling that nothing has changed. Her skin remains pink/red and she is extremely large from the excessive steroids. If I sound discouraged, I am. I told Dwight the other night that I am well beyond my comfort level with the amount of steroids she is on and her overall medication regimen. We understand the need for her to not have internal skin damage but are perfectly content for her to have pink skin for the rest of her life. It would not be the worst thing in the world. Her doctor is leaning toward the high dose steroids beginning next week. We will go in again on Tuesday for the final dose of this drug I spoke of earlier.

We have found that Karina is very sensitive to heat and can not be in the sun at all. Our family loves to be outside and we have always felt that it is a "safe" place for her to be with friends around. We are attempting to head out early in the morning this summer on the weekends to do a bit of sigh seeing, walking, hiking etc......before the heat of the day.

Karina is in good spirits and we have seen some humor in her personality this past week. Karina is workbook addict! She is enjoying school work a lot these days and we can hardly keep up with her demands. She needs help with instructions and writing but totally loves to work her mind. We are proud of her for being interested; now we just have to keep up. We have praised God this week for her mind that was spared damage from the neurological virus. When I get down or frustrated with the physical disabilities, I am so thankful for her beautiful personality and smile that is the real Karina! She has made a few jokes this week with her brothers and we have all died laughing together. We love every minute of every day with her.

The boys had their last baseball game today and we will sure miss the friends we have met on the field. This was a wonderful outlet for us and we will look forward to fall ball! Torin will have his cast removed on July 9th. Few, that is a long time. He is tolerating it just fine. Braydin gets out of school on the 18th and then I need to get busy figuring out how to keep the kids busy.

Blessings to you all and thank you so much for your prayers. God is in control. We want Him to heal her GVHD but in His time. Please pray for a miracle for her skin. We are fearful of the high dose steroids and need to learn more this week. Please keep praying. Dwight and I need a boost of endurance/patience/trust/faith to empower ourselves to better help Karina face the next few months.

Blessings and love from our family to each of you.

Dana

Friday, June 1, 2007 9:18 PM CDT

Dear Family and Friends,

I want each of you to know how deeply our hearts are touched by each guest book entry. You all have sent words that feel as if you have wrapped your arms around our family and hugged really hard. We feel your prayers as God answers daily to us in some way.

As we have passed the 8 month mark of living in isolation, the loneliness is felt by all of our family. Our desire is to open our home and enjoy each of you continues to grow but for now we open our hearts and sit on the front porch and chat. Thank you to the friends who stop by anyway and make the best of it. We love to see familiar faces and find it the highlight of any day.

I want to thank you all for your words of encouragement to Dwight and me. We claim no greater strength of our own but the greatest strength from Christ. Where would we be with out God's word? I have often said that I am glad that God makes time pass because I would have gotten stuck way in the past somewhere. I am working on my heart to hot look back at what was, because that is entirely too painful and unfair but instead to look ahead at what God has in store for Karina and our family. I love surprise and this may be the very best surprise of our lives.


I sometimes mention our parents who are hear at our house faithfully every week. One week Dwight's parents and the other week mine. They have been the backbone, cornerstone, foundation, rock etc................of Dwight and my existence. We can promise you that there is no way that we could have done any of this without them. They have sacrificed all of their personal and social time for the past 8 months fully dedicated to our boys and keeping the house running.



I thought I would tell you a few things about each of them that you may not know...........


My mother-in-law is incredibly hard working. She faithfully prays for Karina, shares special Bible verses with me to encourage me. She keeps our house spotless and the laundry done at all times. She is the lady who tells me she is coming over for the day so I can get out then leaves a card with spending money in my car for me to enjoy. She reads with the boys and takes care of them as her own. She offers very sound advice when asked and I can count on her for simply anything. One night when we first moved to VA., Karina and I were at Walter Reed for an unplanned visit because of a fever. I had not spent but a night at my new house and was feeling very "whipped". After 6 nights in the hospital I finally told Dwight, I could not do anymore and I needed a break. He quickly said, let me call my mom. Mom Sones came that day and spent the night in our tiny room at WRAMC on an air mattress on the ground. Amazing Godly Women!!

My father-in-law is known for saying,” This will all work out." I love that sureness that comes from a prayerful heart. Dad Sones is the man who got nearly all the groceries for the past 8 months. If my car breaks or something in the house needs repaired, I call him rather than Dwight and he is always happy to help me. (Not that Dwight isn't) The chores that take time, energy and research he is happily willing to do and does an excellent job at it. I am grateful for the cell phone calls when he is out running errands asking if I need anything. He has not missed a ball game. Dad Sones can play cowboys and Indians, costumes and all, for hours. He can sing old tunes to my boys and they love it. Supporter and helper.

My mom has not only taken care of the boys, but me! Mom's have a way of knowing just what their daughter needs and when. She once told me that seeing Karina sick is worse that seeing her own daughter sick. She deeply hurts for Karina and our family and shows us her unwavering love by her dedication to helping in anyway possible. My mom spoils us all with a gift each time she comes to visit just to say she is thinking of us, loves us and it makes us all feel special. My mom is the care giver for my grandparents who are aging and in much need of her care. She manages to care for them and us and I know it has been very difficult at times. I don't know how she does it. She puts everything away and fluffs the pillows on the sofa before I come home and knows I like things tidy around the house. She has worked so hard around my house to keep it orderly, cleaning out drawers, kids clothes etc.... If my home is a mess, I am a mess. I think I got that motto from my mom. Unselfish loving, mom!

My dad can fix absolutely anything and does it happily. He cleans my rugs, paints the walls, runs errands, and will work any project he can find around the house. My dad has driven in to many doctor apts so Karina and I don't have to be alone or drive at night into DC. He is happy to sit in the backseat and help Karina with food and drink while I drive. He is Mr. Optimistic and we need that around here. He is pleasant when I am not, encouraging when I need it most and can make Karina laugh with his dancing bear act. Faithful positive, Dad!

Blessings,

Dana

Wednesday, May 30, 2007 8:07 PM CDT

Dear Family and Friends,

This weekend was off to a beautiful start. Unfortunately, Torin jumped off the slide in our backyard and broke his arm. He broke both bones in his left forearm and will be in a cast over his elbow for 6 weeks. He was amazingly brave and tolerated the sedation to set and cast his arm very well. He is starting to get used to the weight and bulkiness of the cast and getting back to himself. He is such a sweet boy and to see him in pain and missing out on the rest of baseball season, swim parties etc........is sad. But, as I have said since we had children, "I can handle broken bones". Cancer is another story................ Over the years I have learned to claim the true promise that "I can do all things through Christ who gives me strength."

Karina had a doctor apt yesterday and it went generally well. The doctor is not totally pleased with Karina's skin situation. Yesterday she was still red and her skin is very dry. Dr. Kamani decided to continue the infusion of the medication that she has been receiving for the past 4 weeks to see if a few more doses can do the trick. Her body does not seem to be responding to the steroids as in the past. If you ask me, I would say because her poor body is sick of being on steroids. Eight months is way too long. The medication she is receiving is used in patients with organ transplants and its purpose is to prevent rejection. It may be working in Karina but very slowly.

Please pray that the next 2-4 weeks will allow her body time to heal of the GVHD. We so need this to happen. If her skin does not heal, the next step is EXTREMELY high does of steroids over a 3 day period. She is currently taking 50 mg of steroids per day and this would be 500-1000 mg of steroids a day for 3 days given through an IV. Please pray that we do not need to head down this road. Karina has just tolerated so very much and we want to see her suffering end and her healing begin.

I spoke with Karina's first grade teacher today, briefly, and we have requested that Karina be placed in her first grade class again next school year. Karina will repeat first grade and hopefully have a free year academically and allow her to adjust physically to many new challenges. Her teacher was pleased with this decision.

Karina seems to be mentally clearer this week. She still has a very hard time sleeping. She is doing some standing activities in the kitchen and continues to work on school work at home. Our babysitter, Renee, is a true blessing to our family. She has incredible patience with Karina through the smiles and raging fits. Renee stays calm and in control. It is very impressive for a young lady to have the maturity Renee has. Thank you Renee for growing with us as Karina is healing. Renee is a competitive swimmer and she is ready to get the boys to the pool. I think I am going to owe her for some swim lessons this summer.


Words are never sufficient to express our gratitude for you all as you lift Karina up in prayer. We know God hears our prayers and knows our hearts. I am praying for Karina's heart. As a parent, we feel we know our kids inside and out. Karina has had several months of inability to express her feelings. I am not sure how she feels about her life now. She does know that God loves her, has a plan for her that she is living daily. She does not seem to have the words or possibly the feelings to say that she is angry or sad or depressed or discouraged etc...............I pray that what we see on the outside is exactly what Karina is on the inside. To us, Karina is patient, easy to please, patient and happy to be involved in the happenings of our house.

I know that Karina misses friends and longs to be able to play like other kids do. She wants to walk alone, swing outside and ride her bike again. We pray for God's will in every aspect of Karina' life and as we are accepting of her abilities whatever they may be. Please pray for Karina to continue to be a fighter!


I posted new photos!

Blessings,
Dana

Wednesday, May 23, 2007 8:17 PM CDT

Dear Family and Friends,

GONE!!! The fungal spots that have been on Karina's lungs since January are gone!!! Possible only by a miracle! God hears our prayers and answers them in his time. I have been praying for her skin to heal and the GVHD to be gone knowing that the fungus was surely still there and probably growing since her steroids have been raised. Wrong!! Who am I to think that God forgot those spots or did not have the power to remove something from Karina's body that we thought was there long term. God is good all the time and faithful to remind us of his presence and power!

Karina's day yesterday with the CT scan (drinking the contrast.......again), the doctor visit with infusion of the new drug to help the GVHD, blood work and going to the tail end of her brothers baseball game left her totally exhausted. She still is not sleeping well but today was filled with joy knowing that the "spots" are gone. She squealed her news to her brothers and grandparents’ today showing awareness that this is a miracle in her body. We have said over and over that we are giving God all the glory!

Today was Omi's birthday (Dwight's mom) and we celebrated her tonight. Happy Birthday, Omi!

I have posted new photos. You can see what steroids do to Karina. She looks pretty miserable but says that she does not hurt anywhere. Good thing or I would be in the loony bin. There is not greater pain than to see your child suffer. We are grateful that she is not and pray that she continues to heal.

Blessings to you, our prayer warriors!


Dana

Monday, May 21, 2007 8:52 PM CDT

Dear Family and Friends,

It has been a few days since I have posted an update and I think because Karina has kept me busy about 23 hours a day. The one hour is for sleeping since moms need a touch of rest each day. God provides the rest! Truly, Karina enjoys/needs help with much these days but her spirit is so sweet I am so happy to be there for her. She is amazingly patient to sit in her stroller, waiting for me to cook or do laundry, sometimes her brothers pushing her around where she needs to be, just happy to be watching someone doing something until we have time to work with her.

The sky is the limit with opportunities to teach Karina. She is limited only by fatigue, tremors and muscle coordination. My dear friend Nancy who graduated from occupational therapy school a year ahead of me lives in DC and has offered to come each Friday to work with Karina. She came this past week and Karina was thrilled and fully cooperated with Nancy. There is another level of cooperation from Karina when working for someone besides her mom. And Nancy as well as Karina's physical therapist, speech therapist and occupational therapist have all struck a cord with Karina. Thank you to these talented professional ladies for there hard work to help Karina.

Karina is still struggling with sleeping and will probably continue until the steroid dose is lowered. Tomorrow we go into Children's for a CT scan of her lungs and abdomen. The doctors are following the spots on her lungs that have been there since Jan. There are presumes fungal and had improved about a month ago. Since the steroid dose has gone back up, this allows the fungus room to grow. Please pray that there is no growth of the spots on her lungs.

WE NEED TO ASK EACH OF YOU TO PRAY FOR A MIRACLE FOR KARINA'S GRAPH VS. HOST DISEASE THAT IS AFFECTING HER SKIN. WE ARE SEEING VERY LITTLE IMPROVEMENT IN HER SKIN AND FEAR THE LENGTH OF TIME THAT THE STEROIDS NEED TO STAY IN HER SYSTEM TO HEAL THIS. THE GVHD IS OUR BIGGEST BATTLE RIGHT NOW AND KARINA NEEDS TO BE HEALED AND WE KNOW THAT GOD HAS THE POWER TO DO THIS. HOW MUCH SHOULD KARINA HAVE TO ENDURE? THE PAIN AND SADDNESS HAS OVERWHELMED ME. TO SEE HER SITTING SO PEACHFULLY, WITHOUT COMPLAINT, DAILY IS THE REALITY THAT CHRIST IS LIVING IN HER. THERE IS NO OTHER EXPLAINATION FOR THE CALMNESS THAT COULD LIVE IN A 6 YEAR OLD CHILD THAT HAS BEEN THROUGH THE ROUGHEST STORM MENTALLY AND PHYSICALLY. I CAN'T ASK GOD HOW MUCH MORE DOES SHE HAVE TO ENDIRE BECAUSE HE ONLY KNOWS AND HE ONLY CAN PROVIDE THE STRENGTH FOR HER AND US. I AM EARNESTLY PRAYING THAT THE STORM IS CALMING AND HER TIME OF SICKNESS IS ENDING.

I spent an hour tonight just combing the guest book entries that so many of you have written. They truly have lifted my heavy heart along with prayer to our Heavenly Father. Please pray that Karina can be healed.

Karina remains about the same neurologically. She still needs help to walk having very poor balance. She is doing some school work and doing a nice job. She seems to process slowly but we do see improvements. She is such a sweet little girl and we so desperately want her back, mentally and physically. We love her for who she is today and pray for our hearts to not be anxious.

We love each of you. We see so many friends signing the guestbook and our hearts are deeply touched that you have remained with us on this long journey. Thank you for the time you invest each day to pray for Karina and our family.

Blessings,

Dana

Thursday, May 17, 2007 9:16 PM CDT

Dear Family and Friends,

Isaiah 30:21 Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." I pray that we are walking in God's will for our lives daily as we face challenges, emotions and fears. My prayer is that my every step is in complete faith and obedience to Christ.


This week has been a busy week and I seem to be dragging myself to the computer too late in the evening to write.

Karina is doing about the same. She had a few tired days earlier this week which seemed to prevent her from focusing. The last few days she seems to be sharper and ready to learn. She is doing school work (with me writing the answers), sitting in a kitchen chair and engaged in whatever is going on in the house. She does not miss an opportunity to see her brothers play baseball. She continues to have a great sense of humor and we see some old facial expressions returning. She held her fork just like she used to tonight at dinner and that makes my heart smile.

Her doctors apt on Tuesday went well. Two of her medications have been reduced slightly and for that we are thankful. Karina continues to have serious balance problems when walking and slow processing skills to speak. What she says and knows tells us that she is completely intact mentally. Praise God. The bone marrow doctor is going to touch base with the neurologist this week to keep them informed on her progress.

Our baby sitter, Renee, has done a fantastic job working with Karina one on one with all kinds of school work. We would like to equip Karina with as much knowledge this summer to best prepare her for school in the fall.

We seem to be settling into life at home again as a family trying to capture the beautiful spring weather, baseball games and a time of healing for Karina. We are accepting and loving a very different Karina than we have known but know that this is God's perfect child.

My childhood best friend gave me a bag for my birthday this week that reads, "Life is Good" and we both agreed that it could just as well say that "God is Good" because He is! Thalnk you Heidi! We see blessings each day and will continue to give Him the glory.

Blessings,

Dana

Saturday, May 12, 2007 8:47 PM CDT

Dear Family and Friends,

This week has been a good week for Karina. Karina is once again potty trained and completely out of diapers (in the daytime). I am just thrilled about this for many reasons. Praise God for lifting that burden off my heart and allowing Karina to feel independent again.

Dwight returned home from a two week trip to Russia and Germany with goodies for the all of us. We feel "complete" again and are enjoying being a family unit. He was pleased to see the progress that Karina is making. He was extremely excited to see the playset up in the backyard and his garage cleaned out.

The boys are doing well and pressing on with baseball season. This remains Karina's only outing and she loves to be outside watching them. Today the humidity was high and her skin begins to itch, so we headed to the car for the rest of the game.

Karina remains on high doses of medicine as well as steroids. She is hitting the very "round" and uncomfortable state. Her tummy is large and hard as a rock to touch yet she continues to eat due to the prednisone. She is sleeping very poorly which has gotten the best of my energy down to ground zero. Today she was quiet which we can assume was due to fatigue. She will not take a nap during the day so she just carries on.

This week we had the pleasure of meeting our new babysitter. Our family has known her for several years but the kids have not. They immediately were excited to have someone very fun to play with. Renee will come two days a week for the summer to help me, work with Karina and play with the boys. I will tell you more about Renee later but know that she is a blessing to our family and an answer to prayer.

Thank you for praying for Karina. She loves receiving your mail as it brings a smile to her face and often jogs her memory of fun times. Karina is continuing to work on school work and things seem to be coming back cognitively. Please pray that the tremors (side affects from meds) will subside and that she can begin to hold a pencil again to do her school work. Also, Karina's balance for walking seems to be at a standstill. We need progress in this are to allow Karina freedom in the future to walk independently.

Happy Mother's Day!

Blessings,

Dana

Monday, May 7, 2007 8:03 PM CDT

Dear Family and Friends,

We have had a wonderful few days visiting with our friends from Florida and celebrating Braydin's 8th birthday. He had a wonderful weekend and special day today at school.

Karina is continuing to show improvement in her alertness, energy and spunk!! She has enough energy to make jokes and be stubborn. A few of my family members have referred to me as stubborn, which I never considered myself until I had children. That desire to have things a certain way, at certain times, involving certain people (my children) has rubbed off smoothly onto Karina. She will patiently wait for the right person in the house to do "it" her way. We love to see her old expressions returning. Her voice remains altered and her speech slow but not too slow for anyone to fully understand what she intends.

Today she did a super job on her phonics workbook. Also, she is beginning to recall math through flash cards. We work for short periods of time each day and we are pleased with that.

Please remember us as we head into Children’s tomorrow along with the Queen of England and Mrs. Laura Bush! Karina hopes to get a glimpse of the Queens hat for the day!

Also, please pray for wisdom for the doctors. I have had heavy on my heart the past 2 weeks the volume of medicine that Karina is taking. My focus is on a few drugs in particular and I am hoping for her doctor to reevaluate and possible reduce the doses if possible. If not, I need further clarification to allow my heart to rest.

God knows each part of Karina's body and what the future holds for her. We pray that there are the fewest side effects possible for Karina allowing her to find freedom in her future after transplant.

Our family wants to extend a sincere thank you to the Mleziva family and Dale for assembling our play set in the backyard this weekend. What an amazing sight for us to see the boys out swinging like old times. Each of these friends put aside their own family time to help us out. Dwight will be VERY surprised and VERY please to see a huge project off his list and off his wife's "to do" list as well. What special friends we have. Thank you Dan and Mary for years of friendship, love, support and kindness!!


There are new photos!!


Blessings,

Dana

Friday, May 4, 2007 3:44 PM CDT

This week has been a wonderful week of pure saturation mentally and physically for my mom and me. We are watching Karina's mind and body heal doing new things, saying new things and demanding new things. Praise God for each day of tremendous progress. Our family and friends who see Karina often are rejoicing tears of joy by the progress this week.

Karina is now feeding herself! Karina is asking to do school work completing a few pages at a time until she is fatigued or challenged. School work was always easy for Karina and now she is finding pockets in her brain that remember phonics, spelling and picture recall. We are seeing the light bulb click on in small increments and best of all Karina has interest to learn again.

Karina is recalling songs and poems that we have memorized over the years. It is touching to hear her voice say the words that she so easily used to say come out in her "new" louder and slower voice. It is all music to our ears.

We are still working for Disney Dollars. This weekend we have had the blessing of being with old friends. Braydin's best friend from Oklahoma and his mom and sister flew in to be with Braydin for his birthday (May 7). What a special treat for all of us to sit together outside and visit. No medicine could heal more than for Karina to see Kaleigh and Miss Amy. God blessed us with this amazing family to be our neighbors in OK and faithful prayer friends. Thank you so much McCulloughs for your presence to encourage us on our journey.


Karina was at Children's twice this week. Her blood counts are outstanding. She received a second dose of a medicine (IV) to pound on the T-cells in her immune system to try and get the GVHD under control. She will have three more doses for the next 3 Tuesdays. We should only be at the doctor once a week from now on.

Karina remains on 4 drugs to suppress her immune system and is at great risk for infection. PLEASE PRAY FOR GOD'S PROTECTION AROUND HER TO WARD OFF AND NOT BE EXPOSED TO ANY INFECTIONS. IT IS SPRING TIME AND KARINA IS MENTALLY SO ALERT ASKING TO DO THINGS. SHE DOES NOT WANT TO MISS A BASEBALL GAME, A RIDE TO THE STORE ETC.......

This week has been physically so busy as Karina is a full time job in a great way. My mom and I have been running around the house tag teaming chores, school work, meals etc......We are smiling around our house. The boys see Karina coming back to life and they love it.

We have had one battle this week and that is the "prednisone devil"! Karina remains on a very high dose of steroids which cause her appetite to go out of control as well as her mood. Unfortunately, the mood has a mind of its own. Karina has fits of rage that are unpredictable and uncontrollable. The good news is that they will go away as the steroids are reduced in the next several weeks.

Please continue on your prayer journey as we see God's healing power in Karina's life daily. We love each of you as brothers and sisters who believe in our Heavenly Father's power! Keep the faith, we are!!

Blessings,



Dana

Saturday, April 28, 2007 9:45 PM CDT

Karina has had two super days. We have seen great improvement in Karina's speaking ability, politeness, and length of sentences; desire to sit without fear, earning major Disney bucks, eating etc............

This past week, God has healed Karina is ways that only he can. There really is no measure to be calculated medically at this point but purely by actions. We feel so encouraged and so does Karina. We tell her that God is healing her making her better a little bit at a time.

When I write about healing and progress I know it is vague because you don't see her every day. She needs moderate assistance to walk. She remains very unsteady on her feel, but is walking more smoothly. Karina is able to feed herself with a fork but is shaky. Her eyes are wide open and alert. She loses focus sometimes as her eyes "float". Karina talks with a soft and hoarse voice very slowly and precisely. She does not open her mouth all the way when she talks. She asks for all things that she needs, she wants to be with us at all times. She does not nap during the day. She can sit with pillows around her. She is enjoying a new sticker book this weekend. She is able to peal the stickers and place them on the paper in the right place. She can read some sight words and counts very well. Karina remembers the boy’s names on Braydin's baseball team and says hi from a distance.

Karina's class at school has been so faithful to write to Karina. Each student has made several cards/art projects for her which brightens Karina day, immensely! Thank you to Mrs. Barham for her faithfulness to remember Karina encouraging her class to reach out to someone sick. The kids writing skills have improved and it is exciting to see them learning. Funny thing is, Karina remembers most all of them by name, even though she only spent 3 hours in the classroom before her transplant.

We are enjoying our family time this weekend. Karina announced today, that she is ready to go to school. I mentioned that school will be out mid-June and will start up in Sept. That is our pray for her to be able to attend the first day of school. She then came back and said, "A summer program!" Smart girl.

The steroids have kicked in and she is eating lots and lots of food. She rubbed her tummy, which is getting rounder by the day, and said "big". We pray not for long.

Please pray that Karina can get off the steroids soon and her GVHD stays away. Kairna needs a rest.

I am posting new photos.

God is delivering miracles to our house and we know that there is no mistake that He is hearing our prayers and providing for our needs. He continues to deserve our praise!


I have posted new photos! Finally!!

Blessings,








Dana

Thursday, April 26, 2007 8:18 PM CDT

Karina woke to a rough day today but as we face hard challenges, God continues to shine light in other areas of her life.

Karina woke today with a serious case of GVHD. Her face was as red as a strawberry, as was most of her body, her skin tight, excessively dry and pealing. Spots were nearly raw and she hurt all over. When we arrived at Children's for our apt, the doctor decided to do a skin biopsy to confirm it is GVHD and not an allergic reaction to another medicine. We will know those results on Monday. He decided to increase her steroids to a very high dose until Monday, then taper back to a reasonable dose. She needs to be off steroids completely for many reasons. The doctor said they can use an IV drug that would target the T-cells which would be 5 doses over a 3 week period of time. This would start next week.

Please pray that the steroids settle down the incredible battle that is raging within her immune system.

There was sunshine on this tough day! Karina is healing neurologically and we are seeing daily improvements. The last several weeks the changes seemed small but steady. Since this past weekend, we have seen Karina start to sing, wiggle to music, request to pray at dinner every night, use the bathroom several times a day earning Disney bucks for online shopping (daddy rather by Disney paraphernalia than diapers)and today she sat alone for a few seconds. These are great strides and when we know that her entire neurological system was affected, we know that there are multiply of areas that need to heal.

Today, Dr. Kamani, Karina's primary transplant doctor spoke with the head neurologist/brain tumor doctor (Dr. Packer) and discussed Karina's case. He feels that she should make a full recovery. Praise God for encouragement.



Thank you for praying faithfully. Words will never be enough to truly tell you our hearts gratefulness. Our family had much to smile about today as we saw Karina progressing toward independence.


Blessings,

Dana

Wednesday, April 25, 2007 9:17 PM CDT

Dear Family and Friends,

Karina has had two pretty good days at home. She has had a bit of trouble sleeping but we are working through the rough spots. Braydin has offered to sleep with her and we have told her that he can not be wakened because he has to go to school in the morning. If he gets wakened he will head over to his bed leaving her alone which she surely does not want to happen. When we lived in OK, Braydin climbed into her pink room and pink bed happily every night. Karina was Braydin's "right arm" and since Karina's neurological virus, Braydin has felt alone without her friendship. We are proud of Braydin for being sensitive to Karina's needs and making an effort to include her when he can. Amazing boy he is!

We were at Children's on Monday and we will go tomorrow as well. We felt that Karina's skin had to be addressed. The doctor decided to up her steroids for one week to get the GVHD under control and add another immunosuppressive drug to her mix. Yek! It is so hard to see her on more medication instead of less but we know that one thing for sure, the leukemia has no shot at coming back with all the immunosuppressive on board. The GVHD is a battle between her old and her new immune systems and in the end they should learn to get along.

Karina's skin seems to be a bit better but her face is not. The skin is very red, a bit rashy and very dry and taunt. It is so tight that her lower lids on her eyes are being pulled and you can see the red lining. She says that it does not hurt until we put grease on it. Please pray that her skin begins to calm down and heal.

I continue to struggle with the major medications that she is on but know that they are saving her life. Please pray for protection for her liver and kidneys as they continue to work well. We simply need her body to heal each day.


We have seen improvement in Karina's strength and speech the past few days. She is progressing daily in baby steps. Her entire body has been affected by the virus and we realize that all the pieces of the puzzle being put together will leave us with a finished product. Her puzzle must be 1000 pieces and we love watching them come together.

I will update you after her apt tomorrow if there is any news. Thank you so much for the kindness you share through the guest book. I am printing the latest to read to Karina tomorrow at the doctor. She will be so happy!

Blessings,
Dana

Sunday, April 22, 2007 9:44 PM CDT

Dear Family and Friends,

This was a rough weekend for Karina as we made not one but two trips to the ER. Saturday morning she woke pleasant and ate a large breakfast. We attempted to go to the boy’s baseball game. Karina was not happy in her stroller and fussed until we brought her back to the car. We left early and she began throwing up the minute we pulled in the driveway. She was unable to keep even water down and we eventually needed to take her in for dehydration. It is very important for Karina to drink a lot of liquid because the 4X a day antibiotic that she is on can be toxic to her kidneys if it is not flushed.

The visit to ER was routine blood work, physical exam, anti-nausea and IV fluids. It was uneventful but long. We arrived home at 3:30 am and got up this morning at 11am. Karina has had no nausea or vomiting since.

This afternoon she developed a fever and the doctor said that we needed to go in again for IV antibiotics. Hind sight, it was overkill but unfortunately we can not take any chances. One ignored fever could be bacteria in her blood that could be fatal. We headed into Children’s leaving behind the boys playing in the sprinkler on the most perfect spring day imaginable. Tough for all of us.

The good news is that we have seen marked improvement in Karina's speech, cognition and fine motor skills this weekend. We all get so excited to see any changes. She still is total care but we love to hear boss us around telling us that she is "all there" on the inside.

I am praying tonight for God to pour down patience on me this week. The devil can slip in the back door of our minds and fill it with selfish and unrealistic thoughts. I am struggling with the mental saturation/intense fatigue/responsibility/sadness/lack of freedom/grief/confinement associated with Karina's care right now. Only by God's grace and mercy am I seeing every new day as a blessing. Just tonight after spending this beautiful afternoon and evening in the ER wishing we were not there, did I come home to enjoy a beautiful evening of fresh air. Dwight had the windows open and we recalled fond memories from the pure scent of the air. I went to the mailbox late tonight and found a bunny rabbit in our yard to feed. God is faithful to provide for all of our needs and tonight he replenished my soul.

Please pray that Karina has a better week. Karina needs to spend time with her brothers and enjoy healing at home. We need a break from the hospital. Dwight's parents are here this week and I don't know what I would do without them and my parents who were here last week. Tomorrow afternoon we head to Children's and we pray not again until Friday. Thank you all for your love and support. You pray because you want to and we simply feel our hearts touched by your love for Karina. Thank you so much.

Please pray for Dwight and I to physically regain strength as we are weary right now. We are weary until we hear her pray at every meal thanking God for each of us. Karina is an amazing little girl teaching us about God's love daily.

Blessings,
Dana

Friday, April 20, 2007 9:56 PM CDT

Dear Family and Friends,

We arrived home last night and Karina slept quite well in her own bed. She received her PICC line in the fold of her left arm and seems to be tolerating it okay.

Karina is receiving antibiotics via IV every 6 hours until next Wed. It runs for one hour so that has made for very interrupted sleep for me but I am happy to do it at home rather than in the hospital.

Today we asked Karina if she wanted to say the prayer at lunch. It was my mom, dad, Karina and I at the table. She said, "Dear God. Thank you for Braydin and Torin. In Jesus name, Amen." My mom and I cried joyful tears. Karina read a few words in a book today. She still enjoys listening most. The weather here is beautiful and she asked to go for a walk around the block, in the jog stroller.

Karina is saying more words each day which means we have to try to figure out what she is saying. It can be frustrating for all involved, but we are so happy to hear her voice. We are working hard on getting Karina back out of diapers. We are offering her "Disney bucks" (fake money with Disney characters) and a shopping spree on Disney.com for success. This will be a step toward independence for Karina and a lot less work for us in the end.

My parents have been here all week and will head home this weekend. The boys have a baseball game tomorrow afternoon and we all look forward to sitting outside enjoying. We always look forward to warm weather for Karina's sake. She remains cold all the time leaving her bundled up. She is still having very bad pealing of her skin from the graph vs. host disease. Her doctors want to address this chronic problem next week.

Thank you for your love and prayers daily. We will post new photos soon.

Blessings,

Dana

Thursday, April 19, 2007 8:30 AM CDT

Dear Family and Friends,

Karina successfully had her broviac removed in surgery yesterday. Things did not work out of Tuesday afternoon for it to be done then. Today she will have the Pik line placed in the radiology dept. We hope to go home late this evening and if not first thing tomorrow morning. She will go home on a strong antibiotic every 8 hours for a week to keep her blood infection free. Nothing has grown in the blood cultures from Monday so that is good news.

Karina's GVHD is still acting up and we pray that this settles down very soon.


I will let you know when we get home how everything went.

Thank you for praying for Karina's good health and her mental strength. She seems to be doing pretty well.

Blessings,
Dana

Tuesday, April 17, 2007 4:39 PM CDT

Dear Family and Friends,

Karina had a doctors apt yesterday as well as a CT scan of her lungs and abdomen. The good news is that Karina's blood counts are looking very good, rising on their own. The other good news is that the CT scan of the spots found on her lungs two weeks a go are clearing nicely. No further surgerical procedures are necessary, thank goodness.

After we got in the car, Karina began throwing up. After arriving home, she developed a fever and we came back into the hospital last night to be admitted. The doctors, Dwight and I all agree that her broviac needs to be removed since it is a very likely source of her infections. It is a double lumen broviac and one line is blocked and not working which means that the doctor does not know what may be in it or growing in it. It may be letting off bits of bacteria which may have been the spots on the lungs, it may be sending infection through her body that has caused her GVHD to be irritated over the past month. Many questions but this is a good start to get rid of possible infection.

We will be in the hospital until Friday, most likely. We have waited all day for surgery to take her down and in the mean time, her clotting factor in her blood is off so she is now receiving an infusion of plasma. This is her first and we pray for no reactions. Karina had an IV put in her hand today which will stay in until Thursday. On Thursday afternoon, Karina will go back to the surgery area for a PIK line to be put in. I am unsure of the spelling. It will be a small tube inserted through the fold in her elbow that will go up past her shoulder and into the vena cava (large vein) leading to the heart. This will become the "new broviac" for all blood draws and medication infusions. It is has a shorter life but will be less invasive in the long run.

Karina's fever was gone as of last night at 8 pm and we pray that it stays away so we can truly go home by Friday. She is very hungry as she did not eat yesterday because of feeling sick and was no allowed to eat today. Her hand is sore where the IV is and ready for the surgery to be over.

Nothing today was easy for Karina. We seem to have one road block after another but are feeling peace about the new PIK line going in. I have had a few very frustrating moments and I have to pray silently for wisdom to speak kindly and firmly on Karina's behalf without losing my testimony as a Christian. Our faith remains in our Heavenly Father to carry Karina through yet another difficult week of sedations and procedures. Please pray for her to mentally and physically stay strong. We love her and are feeling deep sadness to see her go through so much discomfort, day after day, week after week. We are praying for her sickness to end to allow her a normal life. Much earned in our eyes and we pray that is God's will for her.

Blessings,
Dana

Sunday, April 15, 2007 2:56 PM CDT

Dear Family and Friends,

Thursday was a day that brought some good news. Karina saw the neurologist who had not seen her in 3 weeks just before she was discharged from the hospital. The doctor was very pleased with Karina's progress in that 3 week period which we found encouraging. Daily, Karina's progress seems slow but steady. To the doctor, she has come a long way. We spoke with her about a lot of areas of concern for us. She is comfortable with higher doses of fish oil and good multivitamins. She read the final MRI results and still feels strongly that Karina had a neurological virus that caused an inflammatory response in her body that has affected her entire body. She said that children with normal immune systems recovery completely, but is unsure because Karina's immune system is so suppressed and will be until the one year post transplant. We know that all things are possible through the power of prayer and God's perfect timing. That is our prayer for Karina.

Karina's blood counts are holding steady as well as her antibody level which helps fight infection. Karina is beginning to sleep better at night, but not for long periods of time. We are past eating and going to the bathroom in the middle of the night so no more boiling noodles and scrambling eggs at 2:30 am.

Friday afternoon, we received a call from Children's that Karina's blood type has switched over to the donor type, B+! She will have this new blood type for the rest of her life, we pray, and are grateful for good news.

Our family is striving to maintain some type of normal life. It will be very difficult until Karina is no longer in isolation and she regains some indolence. Karina now has a new stroller that is built for larger children which allows her to sit in an upright position. She prefers for her head to be off to one side, still working on neck strength. Karina has been very fearful of falling and we are not sure why other than to say that her brain is going through healing stages and her awareness to fear is increasing. We do not see this as all bad.

My in-laws finished helping us this past week and worked so hard for our family. Thank you Omi and Bubba! My parents are arriving this evening for the next week. We are so grateful for their dedication to us full time since last September. The boys have adjusted to them being in the house and don't complain an ounce.

I was praying the other evening and felt the Holy Spirit lay something on my heart. Dwight and I, from the point of relapse last June, felt that Karina would either survive living cancer free or she would be taken home due to complications from the transplant or return of cancer. We have always prayed for God to allow her to live. We never considered that there would be a very different "in-between" recovery for Karina and that is a long phase of disability. God had another plan and we are thankful for each phase of recovery and healing for Karina. God has answered many of our prayers in His own way providing our family with blessings from others, opportunities to witness to others, time of growth/adjustment for each member of our family and His strength revealed in us from deep within.

This journey is teaching us to rely more on God and less on our own abilities to control all things. We are thankful for each day given to us. Karina's life lesson this week has been to use our own minds to make good choices. She is learning that God gives us each a mind and choices and we want to wake up each day choosing to be pleasant, polite and thankful for all we have. And that is a lot!

Blessings,

Dana

Wednesday, April 11, 2007 8:39 PM CDT

Dear Family and Friends,

A week and a half ago, Karina had a follow-up CT scan of her lungs to check on the fungus growing there. To our surprise, the lungs had many new growths/spots on them which left us very uncomfortable. A few days later the doctor increased one of her antifungal drugs to see if this would help. From the beginning of the fugal growth, about 10 weeks ago, the doctors said they are not 100% sure this is fungus but looking at all of the circumstances, it is most likely fungus. This Monday, Karina will have a follow-up CT scan to see if the past 10 days of extra medicine has worked.

All of that said, we ask you to pray for the growth/spots on her lungs to be smaller or gone. We are asking God for a miracle, today. The bronchoscopy last Thursday has not yielded us any results. The fluid that they drew out has not grown anything, fungus, TB etc............we are blessed with that good news although it would be good to know exactly what we are dealing with to specifically treat it.

Last week, they drew blood for a specific white cell count that would tell us that this may be another form of cancer that test came back negative. PRAISE GOD! If the CT scan comes back with slight improvement, than no further surgery would be needed. Karina's doctor is consulting with a doctor at NIH who is the nation’s best fungal specialists. We pray that his guidance and advice is accurate and helpful.

I often tell Dwight that I am deeply thankful for curious, smart people that wear white lab coats everyday and work behind closed doors that receive little recognition. Thank you to the scientists who have worked so hard over the years to provide Karina with a cure.

Karina had two pretty lousy days on Monday and Tuesday. We are not clear why other than she did not get solid nights sleep. Dwight and I are witness to that as we did not either. Karina is telling us in her own way that she is mad and frustrated. We completely understand as Karina has done everything she is supposed to do to get better; take her pills (and a lot of them), stay in isolation, pray, eat well, sleep, drink a lot of liquid, go to the doctor, wash her hands etc..........and she is sicker and in more discomfort/pain than ever. If I dwell on this thought for more than 3 seconds, I am consumed with heart wrenching sadness to see our precious baby girls mind and body paralyzed. After the 3 seconds, I turn my heart and mind to God with hope, mercy and grace in her future. We are praying endless prayers for God to heal her body of the virus that left her body unable to function independently. Karina is a tough, strong willed, independent little girl that is trapped in her own body right now.

I am struggling personally with how much to push Karina to do activities that I feel she can do. I have a mind full of ideas, therapy related, that I would like to do with Karina but she is not interested in the first one. If I did not wear the hats of; mom, nurse, cook, teacher, emotional support, personal needs provider etc.........I would like to wear the hat of occupational therapist. Please pray that Karina begins to find interest in things and is willing to work even when it hurts and would become receptive to new activities.

We are seeing baby steps of progress in Karina. Tomorrow will be a day of reality at our neurological exam. The doctor has not seen her in 3 weeks and we look forward, nervously, to her evaluation and prediction of Karina's future.

Thank you for signing the guest book. Your words encourage us to continue on this journey with faith and patience. Karina loves to hear us read your names which allow us to reminisce with her. We love you all.


Blessings,
Dana

Sunday, April 8, 2007 9:45 PM CDT

I feel it has been some time since I have written on the website as Dwight has kept you all informed lately.

Happy Easter to you all. We had a wonderful day with Dwight's parents celebrating our Saviors resurrection. Our day was filled with joy to be together as a family.

Karina is showing improvement daily in small ways. She remains total care for all of her needs as the neurological virus/inflammation has affected every part of her body. She speaks in a monotone and often loud voice with her mouth unable to coordinate the details of speech. Karina walks with moderate assistance of one person. Karina fed herself goldfish crackers today for the first time; otherwise we feed her with a fork. She can roll over in bed; sit without assistance for a few seconds alone like in the tub or on a chair. She spends a lot of time in the jog stroller in the house which we like because she stays awake and alert this way and we can roll her from room to room easily to be close by. She keeps her eyes open/awake for the majority of the day which is a great improvement as she used to prefer sleeping on the sofa. She smiles and laughs. Karina seems to know everything that is going on around her; she just processes and responds a bit slow. Karina has asked Dwight and I to come close to her and she surprised us both with a kiss on the cheek. She says amen at the end of family prayers and still knows her ABC's and counting. Karina started praying the other night at bedtime and I just cried tears of joy. It was music to my ears and God must have been delighted.

Karina gets frustrated when she is telling us something and we can not understand her. We try very hard to listen and meet her needs. She can be very demanding and fussy at times which are hard on all of us but we are thankful to hear her precious voice and have her presence.

This gives you all an idea of the progress Karina has made in the past 3 weeks and allows you to know how to pray for her specific healing. We see a lot of fight in Karina which has been her nature since she was a baby. Karina has changed but we know that this is the Karina that God wants us to love and embrace in our family. We are learning to be content with what God gives and not focus on what has been taken away. I looked up contentment in a book I use as a learning tool for the kids and it says, "Happy and satisfied." Wow, I am working on that attitude daily in my heart. As parents we are seeing how Karina's mood/tone/effort is a direct reflection of our influence.

Please pray that we wake each day with patience, love in our hearts for a new day to make a difference and joy to know that God has given us three beautiful children to love and His word to guide us through life’s obstacles.

Blessings,
Dana

Friday, April 6, 2007 8:05 AM CDT

Family and Friends,

Yesterday was another long day but in the end we were able to come home after Karina's procedure and get a relatively good night sleep.

Karina's Bronchoscope (small camera inserted into the lungs) to take a sample of the "growths" went without any issues. She rested well after the procedure and had only a slight fever. We will not know the results until early next week. The results will determine our next course of action. If the growths can not be determined they will do an open lung biopsy (an invasive procedure). If the growths come back as fungus...we will most likely change to a different anti-fungal medication. In the meantime, pending the results, the doctors have upped Karina's current anti-fungal dosage with the hopes of shrinking the growths. She will have another CT scan next week, to confirm if the growths are decreasing in size or if she needs to move on to the next procedure. Our prayers are that an increase or change in medication is all that will be required. As long as Karina stays fever free we won't have to go back to the hospital until next Tuesday, for our bi-weekly appointment. Fridays are our other day for doctor’s appointments.

Karina already had a big morning today with a nice warm bath to wake her up followed by one hour of speech therapy and then an hour of physical therapy. These two back-to-back hours of "work" tired her out so she is sleeping on the sofa now. She wants to go for a car ride when she wakes to get some fresh air and see the sights of spring.

Braydin and Torin came home from Williamsburg yesterday evening after an "awesome" stay with their grandparents and cousins. Today their other set of grandparents will take them to Ringling Bros Circus...their SUPER spring break continues.

We pray that each of you enjoys celebrating Easter with your families this weekend. The Sones are glad to celebrate as a family all in the same house.

Thanks for your continued thoughts, prayers, notes of encouragement, journal entries and phone calls.

Happy Easter!
Dwight, Dana, Braydin, Karina and Torin

Wednesday, April 4, 2007 11:37 AM CDT

We have all been to the beach arcade and played the "Wack A Mole" where the mole pops up and you wack it down only to find another one pop up. That is how life has felt. Surely not a spiritual analogy but reality for me these days.

Late Monday evening, while still in isolation on another floor, the doctor stopped me and said that the fungus that was on Karina's lungs is not gone. But, instead there is much new growth of something all over both lungs. Karina has remained on two good antifungal drugs and we totally anticipated that the fungus would be gone. This was a hard blow to our spirits/hope/healing/recovery process. Karina is still in the hospital today and we have begged to go home for the night tonight. We will return tomorrow for a bronchoscopy. The doctors hope to send a tube and camera down her to her lungs to see if they can rinse and draw a sample of the "stuff" growing on her lungs, biopsy it and treat it with the appropriate drug.

Karina is not in good spirits. She has had another 6 days of not wanting to be in the hospital, missing home and her brothers, not willing to get out of bed to do OT/PT and increasing weakness. We insisted to go home and return tomorrow against the "policy/paperwork" rules of the hospital.

If you can tell by my writing, I have had more sleep lately and am energetically approaching my soapbox on lack of service for children in a Children's Hospital. We are two years and two months into fatigue for Karina. There are many aspects of her care that need to be changed to ease the pain/sedation/inconvenience of her care.

Please pray for our family patience, kindness, Christian spriits and love during very frustrating and challenging times.

The boys will come home on Thursday afternoon and we will be home by the evening to all have dinner together we pray. I had some time out of the hospital yesterday to reenergize, the boys are having a blast with my parents and their cousins in Williamsburg.

My heart is singing the song about praising God in the storm!! Please pray for Karina to feel peace and calm tonight as she is home to rest.

Blessings,
Dana

Monday, April 2, 2007 3:13 PM CDT

Family and Friends,

Karina and Dana remain in the hospital but are expected home on Tuesday!

The bacteria in Karina's blood was identified and is being treated with a new type of anti-biotic. This anti-biotic is attacking the bacteria in Karina's blood and as a result, she has been fever free since early Saturday morning. Additionally, following three negative reports on her RSV panels(repratory virus), the doctors say her RSV is also gone.

Today, Karina had a CT scan of her lungs to see if the fungus that she contracted several weeks ago is continuing to dissipate or even gone. We should know the results sometime in the next day. On Weds, Karina will have another MRI on her cerebellum to verify that the neurological virus she contracted is also gone.

As you can see Karina has several "open eneded" issues that she continues to be treated for...we are very optomistic that she will get over these and back on the road to recovery. Her battle to remain cancer free and to become a normal six-year old girl are in our daily prayers. We know this is all part of God's plan as well.

Karina is excited to come home and enjoy the beautiful spring weather we are having. On the way home from the hospital tomorrow, she wants to drive by the tidal basin to see the beautiful Cherry Blossoms. They are currently at their peak...she is very excited to see the beautiful trees and flowers. Additionally she wants to stop by McDonald's to get a hamburger and a parfait...her two favorite snack items.

Braydin and Torin are in Williamsburg for a couple days enjoying their Grandparents and cousins. The Sones family should all be under the same roof (our house) by Wednesday evening. Thanks for your continued thoughts and prayers for Karina and the rest of us.

Dwight, Dana, Braydin, Karina and Torin

Saturday, March 31, 2007 8:27 AM CDT

Family and Friends,

Yesterday Karina and Dana went to the hospital for their standard Friday checkup. Karina slept restlessly throughout Thursday evening and when she wok up yesterday morning she had a fever. When Karina and Dana got to the clinic, blood cultures were taken and it was determined that Karina had a bacterial infection in her blood. Additionally the doctors found that she had a mild case of RSV (a respatory virus). The doctors wasted no time in admitting her to the hospital as an in-patient. We are not sure how long she will have to stay but it will be at least through the early part of next week.

The doctors are still trying to find out exactly what type of bacteria is in Karina's blood so they can treat it with the "perfect" antibiotic. In the mean time, she is on a "broad spectrum" antibiotic to cover all possible bacteria. Karina is unable to stay in the hemoc/bone marrow ward because of the RSV so she is in a room on a different floor with nurses that don't typically work with cancer patients. Dana is paying close attention to the medications and treatment Karina receives...over the past 24 hours Karina has received great treament from the nurses and technicians on the new floor.

I spoke with Dana this morning and she said she and Karina had a little better sleep last night as the new floor is not as busy/active with beeps and noises that typically accompany the hemoc/bone marrow ward. The room also has a better view to the outside world. As Dana and Karina both know, when you stay in the hospital as much as they have over the past two years...you always try to find the bright side of things that are new and different. (less noise and more sunlight in the new room)

The boys and I will take several hours this afternoon to watch the Baltimore Orioles and Washington Nationals play one last preseason game before opening day on Monday. Dana will take the boys to the Cherry Blossom festival here in DC tomorrow to get a breath of fresh air and enjoy the beautiful sunshine. The boys continue to be real troopers throughout this recovery process.

We want to personally and publicly thank EACH of YOU for all you do to support the Sones family. Whether by emails, notes of encouragement, phone calls or responses on this web site, we know you are lifting up Karina and the Sones family in your thoughts and prayers. We also want to thank publicly our parents, who continue to keep the house running while Dana and I attend to Karina, the boys and work. We are truly blessed with two fantastic sets of parents...thanks Mom and Dad Sones and Mom and Dad DiTieri!

Like many of you, I have gotten used to reading Dana's tremendous updates...but today you must settle for a journal novice. Please continue to pray for Karina's speedy and complete recovery and Dana's endurance.

Thanks
Dwight, Dana, Braydin, Karina and Torin

Wednesday, March 28, 2007 8:45 PM CDT

I have lost my journal to you all twice today and I am wondering if I am supposed to be writing tonight. I am running out of energy so I will write you some "bullets" as Dwight calls them. These are the highlights.

Karina's blood counts were good yesterday.
The doctor said she may now have supplements so I have started giving fish oil and B Complex.
Karina is gaining strength in her head and back. Walking more smoothly.
Remains 24 hour care.
Is off of TPN which was the IV feeding that ran 16 hours/day.
Eating fairly well.
Slept well last night for first time in weeks.
Is taking 2 sleeping medications, hopefully not for long.
Has a very hoarse voice and can just whisper. May be from allergies.
Boys are okay but asking when will this be over. When will Karina be able to play SKIP-BO again.
Karina's skin is pealing severely from the graph VS. host.
Took last dose of higher steroids tonight to beat the GVHD.
Karina has complained of not feeling well yesterday or today. She says she hurts all over.

Please pray for healing, a miracle, restful sleep for her and I, no more pain, and patience for all of us. Karina is trapped inside her precious body. She has cried because she is scared. Please give us strength, dear God, to meet Karina's needs, care for her, reassure her that she is healing and that God does love her.

Blessings,
Dana

Monday, March 26, 2007 10:27 AM CDT

Spring weather was in the air this weekend and we all enjoyed some time outside. Karina went for a ride around the neighborhood in the jog stroller and watched the boys making fire with a magnifying glass. My sister, Debbie, came for the weekend to help and it was much needed. We enjoyed seeing her with a bright perspective and optimistic view.

Karina had a tough weekend. She began itching on Friday and it an all time high last night. She has been very agitated and restless with nothing offering relief to the internal itching. I called the doctor this morning and they feel it is allergy related (weather) causing the graph vs. host to flair. This has happened before and steroids work well and quick to get it back under control. We have upped her steroid dose for 3 days with hopes that it eliminates the itching and swelling on her face and upper extremities. Her skin is red and shiny as it is tight all over. She does not feel well.

Dwight's mom is here for the week and we appreciate her help so much. Please pray that Karina begins to feel better and that she starts to sleep through the night soon. I am feeling the weariness of severe lack of sleep and that leaves me unable to cope and function normally during the day.

Karina's blood work from last week was normal. We go to Children's tomorrow and Friday for weekly appointments.

Thank you for your love and prayers.

Blessings,
Dana

Thursday, March 22, 2007 4:06 PM CDT

It has been a very busy few days caring for Karina. Our friend, Robin, has been here this week and we don't know what we would have done without her. Karina remains full time care. My mom has had house duties to include all the laundry, dishes and cleaning. I am managing the flood of calls from the home health folks adjusting medications, scheduling deliveries, filling prescriptions etc.........

Karina is very restless through the night which has left me exhausted. Karina on the other hand has enjoyed long naps during the day. We are trying desperately to change this pattern. Karina is eating much better and we are really hoping that she can be off her TPN in the next week or so. She is eating a lot of Italian food!! That's my girl!!

Karina still requires moderate assistance to walk and to sit up. She is holding her head up better and keeps her eyes open more. Last night was the first time we saw her smile and laugh thanks to her brothers.

Each day is baby steps. I have prayed for forgiveness lately as I have felt that this is a very unfair setback for Karina. God is teaching us all through Karina's temporary disabilities. It is mentally and physically challenging to care for Karina but we are thankful for each day to love Karina in any circumstance.

Once again, thank you to the friends who have brought meals and taken the boys for play time. Keep praying as we are for complete healing for Karina's precious body.

Blessings,

Dana

Tuesday, March 20, 2007 9:18 AM CDT

Good morning! It has been a long few days of tremendous hard work for our household. Karina has had some trouble with the TPN and we have made daily adjustments to see if we can ease the discomfort and high blood sugar levels a bit. We have also coordinated for Speech Therapy and Physical Therapy to complete their evaluations this week and begin therapy. Where is Occupational Therapy? Me, I guess for now until a time and therapist becomes available. I am thrilled to have a job but where is the paycheck? Just kidding of course.

Yesterday, Karina made some great strides. My last email was filled with reality which was hard to write about. Whoever said "reality stinks" sure made a true statement? On the other hand, my mom has faithfully stated, "this too shall end" which is a Bible verse. We are prayerful that Karina remains in no pain. Frustrated beyond measure, we are sure, but not in pain.

Yesterday, Karina said she was hungry. This is a huge milestone. That she came up with her own sentence and knew to ask for food was a joyous moment for us. My mom took pictures of her eating. That is what grandma's do!!

Yesterday we were blessed with the help of Dwight's cousin and dear friend Robin. She is a former pediatric Hem/Onc nurse with two daughters in college. She is compassionate, gentle yet firm, energetic, strong and willing. She lightened our load tremendously yesterday, spent the night at Karina's side last night and will help me get Karina to her doctors apt this afternoon. What a blessing from Heaven to have this opportunity to enjoy her company. Thank you to Aunty Robin for cheerfully helping us this week.

Sleep is at a premium in our house and the constant ache between my shoulders is there to stay but happily to know that Karina is healing. Karina has gained strength in her trunk area, is scratching with her fingers and overall keeping her eyes open more each day.

Karina ate a lot of food yesterday and through the night. She has tolerated her favorites without nausea or vomiting. Praise God for this because we were afraid that she would eat heartily and not be able to keep it down.

God has prepared her stomach ahead of time and we pray that the TPN will only be needed for another week or two. We want to see her very strong before discontinuing that to aide her bodies healing.

Thank you for the meals that have been provided, play dates for the boys, the gifts and cards, guestbook entries and the faithful prayers!! We are touched by those who have said that they are praying through the night, lighting candles as a reminder of Karina and God's desire for us to be light's of this world when there is so much darkness.

Blessings,

Dana

Sunday, March 18, 2007 9:29 AM CDT

I have not written as our days and nights have been filled with caring for Karina. Honestly, when I do not have something good to say, I rather not write, but I know each of your stands firm on your faith that God is hearing our prayers and watching over Karina and our family.

Karina remains the same. She requires total care for all of her needs. She is having a very hard time sleeping at night with restlessness, yelling/crying out repeatedly for what she needs. Anything from wanting to roll over, diaper change, thirsty, wet pillow case from the water spilling, cold, hot, stuck (in the middle of rolling over) etc......She yells repeatedly over and over. The house rattles with her pleas which have penetrated everyone in the house emotionally.

We feel extremely hopefully that this disability is temporary and with time, nutrition and therapy she will make a full recovery. Yesterday (weeks, months and years ago) was easy compared to today but we have faith that God pave the path for Karina and our family. We are trying to enjoy today.

My dear parents have been here all week and we truly would have to hire help if it was not for them. Please pray that we all continue to be optimistic, faithful, encouraging to each other and can find much needed sleep/rest for our weary bodies and minds.

Yesterday, Karina spoke a few more words, adjusted her blankets on her own, scratched her tummy and wanted to go for a ride in the car. Her eyes were wide open more and we got a glimpse of "Karina". Small steps each day will add up to great strides a month or two from now.


Please remember Braydin and Torin in your prayers as the reality of her sickness is evident. They long for friends to play with and happier times which we and friends are trying to provide. Also, pray for Dwight as he has a job to maintain with research, papers, presentations and travels to focus on. He has done an amazing job keeping it all together. I am proud of him.

We are monitoring Karina's blood sugar levels today to track the reason for the excessive thirst. We hope to solve the problem and find a way to allow her to rest better at night which will provide us all more energy.

Thank you for your love, support and prayers. We feel the embraces across many miles.

Blessings,

Dana

Thursday, March 15, 2007 1:42 PM CDT

Yesterday was a busy day of therapy for Karina. She received occupational therapy and physical therapy twice each, a visit to the eye doctor, numerous doctor visits to the room etc............By the end of the day, I was physically too tired to think, move or care about much more than a good nights sleep.

Debbie and my dad spent the morning and afternoon with us today which was such a treat. The big news is that we are going home!!!

Home means a lot of work at this point. She will be on 24 hour IV feeding called TPN (total parental nutrition, I believe), 4 hours of other meds and total care for her needs. She will start OT, PT and Speech therapy by the first of next week. The doctors feel she is medically and neurologically stable and being in the hospital means more exposure to other germs. We are happy to be headed home but a little nervous as well.

My parents are at the house and a tremendous help. The Sones will soon return from TX and are also available for next week. We pray that Karina continually and slowly improves, that God will protect her from any other illness until she recovers from this, and that our patience and energy meet her needs. With God, all things are possible and we trust him to carry Karina through daily healing her.

Blessings,

Dana

Tuesday, March 13, 2007 8:31 PM CDT

CANCER FREE!!! God is so good to bring us this encouraging news after a very long few weeks. Karina was scheduled for her procedures this morning at 9 am. There were some scheduling difficulties and she was taken in around 2 pm. We were very pleased with the anesthesiologist and ENT doctors in the operating room. Karina woke with the pleasantly quiet and sleepy as in the past few days.

We are all rejoicing with these early findings. Her bone marrow will be sent off for DNA study to determine if she is still 100% donor cells. We have no reason to believe differently.

The doctors and Dwight (through internet research) compiled another handful of tests to be run on her blood. We truly do not expect to see positive results and pray that this is God's plan as well. All signs are leading to a virus that triggered an inflammatory process which leads to her cerebellum.

I am home for a very quick nights sleep. Last week Torin had the throw up bug and this week Braydin has an ear ache, fever and rash on his body. I came home to take Braydin to the doctor and put the boys in bed. Tomorrow at 8 am we have a family meeting with the bone marrow doctors and neurology to discuss Karina's health care plan.

Karina is in great need of nutrition to regain some strength. In the mean time, her body has become shockingly weak. Please pray that she will begin to be more alert, drink some calories and gain much needed strength.

As Braydin and I were sitting at a stop light this evening, he heard a car with a loud song playing and he said, "Mommy, that sounds like church music!" It was indeed and it was playing the praise and worship song Holy, Holy, Holy Lord God Almighty. We both smiled and sang along with our window down. Our hearts are resting tonight in this good news yet we are sad because Karina does not know/does not care because she is so weak/does not understand what is happening.

Please pray for Dwight and I to have patience to wait for her healing and renewed energy. As parents we feel very helpless. I have that, "let's get up and move our body everyday because it is important for circulation, weight bearing, tendon stretches and on and on............. We struggle to see her so unable to function but we know that in God's time, she will heal.

Dwight is there tonight sleeping with her. His fuel tank has hit empty and I ask that you pray for him as well. His school has been more than gracious with understanding our circumstances but those of you who know Dwight, one day of work missed is one day too many.

I am so excited to see my sister tomorrow. Debbie is driving up from Williamsburg to sit with me for two days at the hospital. What precious time that will be. My boys are wondering why their 3 cousins aren’t coming along as they love to play together.

Thank you all for your prayers. I say that so easily but know that our hearts are covered with your love for our family. The gifts, food, mail and goodies sure cheer us up. My spirit has been uplifted today by your loving entries and I can now wake up tomorrow with hope for Karina. Please pray that Karina feels and knows of our love for her!!

Blessings,

Dana

Monday, March 12, 2007 8:24 PM CDT

Karina is doing okay. Her MRI was prompt this morning at 9:15 am and she tolerated it well. The results of the test showed no change in Karina's brain. Praise God for that great news. There are many symptoms about Karina that could have shown otherwise so we count this as answered prayer from our Heavenly Father!!! Thank you for praying her through every minute of that test.

Last night Karina's NG tube fell out/was pulled out/helped out of her nose/bumped out at 10:30 pm. She had tolerated the tube feeding well and we felt so encouraged by the fact that she was receiving nutrition. Her poor nose and throat have been irritated enough that we decided to leave it out. The goal was to have it reinserted while she was sedated this morning. They got it in but it did not stay. So.............no more NG tubes for now. She is receiving TPN feeding which runs through her veins instead of her digestive system. It is the second option but will work for now. We are still encouraging her to eat as well, but she has not. She is drinking and taking her pills beautifully.

About mid day, Karina became very restless and this continued and escalated. She can not get comfortable and is constantly moving, rolling and needing something adjusted to be made comfortable. My back and patience were tested by 9 pm tonight and she is now fast asleep with the help of benedril!! I hope that this will settle her body down for a good nights sleep as tomorrow is a big day. I am wondering if she did not metabolize the sedation this morning and it hung around in her system for a while??

The day was filled with doctors stopping by to figure out this mistery in Karina. No one has an answer just yet but we pray that tomorrow will hold answers and rule out possibilities. She remains weak, unable to sit up on her own, walks with much assistance, no fine motor skills in her hands, eyes closed with loud slurred speech. All of these symptoms lead the doctors to believe that the inflamation in her cerebellum is the cause.

What has caused the inflamation? A virus most likely. Both bone marrow doctors feel it is viral, one believes it is respiratory in origin and has traveled to cause this swelling. Both say that relapse of cancer is not likely purely by the lack of symptoms and blood work that would support it. The neurologist did say that if it is a virus, it should clear itself in time and that there should not be any permanent damange or side effects. They referred a childs brain to being "plastic" at this age healing on its own. We pray that this is true for Karina.

Please pray that Karina tolerates the painful procedures tomorrow.....her back, her hip and her throat. The ENT doctors will run a scope down to check for infection, blockage etc.........Please pray for her to wake up with minimal pain and discomfort and that she is not aggitated from the sedation.

She knows what lies ahead tomorrow, but is too weak to put up a fight. Dwight and I have told her that we are all trying our best to figure out why her body is not working the way it should. We struggle with the unbelievable ammount of suffering she has tolerated the past two weeks. As parents, we want to fix everything and make it all better. We can not, but instead can offer her comfort by our presence, prayers, singing, talking to her and supporting her needs. It just does not seem like enough.

My heart is singing these words tonight. "Oh Lord our Lord how majestic is your name in all the earth. Oh Lord our Lord how majestic is your name in all the earth. Oh Lord, we praise your name. Oh, Lord we praise your name. Prince of peace, mighty God. Oh Lord God almighty."

Blessings,
Dana

Sunday, March 11, 2007 8:29 PM CDT

Today has been a long day for Karina. She was able to have the NG tube inserted with the help of X-Ray to watch for proper placement. It worked the first time and we felt very relieved. Unfortunately, it has fallen out 3 times this afternoon. Our sweet nurse was able to reinsert it each time but with much discomfort to Karina. It is a constant gag feeling even though it passes the gag reflex area in her throat. She has tolerated the tube feeding very well and says that she feels full in her tummy. She has not cried or complained today.

Karina has kept her eyes closed most of the day. She says it hurts to open them. Karina does not initiate conversation but answers our questions. She looks just wonderful. Her skin is smooth and pink and her hair is beginning to grow back slowly. Her blood counts came back right on target and she is maintaining hydration perfectly. If we only knew what was causing the neurological changes.

Karina was able to walk a short distance to the wheelchair this morning but was too weak to take a bath tonight. She has battled the gagging problem most of the day. She sleeps very restfully and looks so peaceful. I wish I knew what was going through her pretty little mind!? Only God knows and therefore He can provide the comfort and reasoning that she needs.

The next two days are big days for us. She will have an MRI with sedation hopefully before noon and we hope to know the preliminary results by the end of the day. Please pray that there are no neurological changes.

Tuesday she will have a bone marrow biopsy and spinal tap all at the same time and again with sedation. It is very hard to see her go through anything else in the fragile state she is in. It is hard to explain a good reason for her to endure anymore tests/procedures and discomfort at this point. She is so weak that she does not have the words or actions to put up a fight. As a parent, this is so painful to watch.

As I write, my friend Nancy is sitting close by reading just to offer friendship and support. Her son, Bryan, is battling bone cancer and could also use our prayer. God always provides a friend to me when we are here. It would be so lonely to not know any other parents and I am thankful for the ladies I have met.

This is a big week of possible answers, some of which we may not want to hear or be ready emotionally to hear. Please pray for Karina's precious mind and heart that she remains courageous and patient while her body heals.

The Sones were at our house this past week and provided unmeasurable love and support to each of us. Dad Sones spent many hours here at the hospital with me and was my sanity when I was not. Mom Sones ran the house, kids and meals with style and grace. I left for the hospital Friday morning and she was cleaning up throw up off the carpet. These two people have more energy than I do. They have given of themselves lovingly and we are grateful.

My parents took the baton today for the week. The boys are becoming concerned for Karina. Please pray that they do not become scared. Thank you for the beautiful journal entries. Dwight and I need to hear of your love and support for Karina and our family right now. Thank you so much.

Blessings,
Dana

Saturday, March 10, 2007 6:24 PM CST

Yesterday truly had just a minute to update the website. I wanted to give you a few more details regarding Karina.

The nursing staff attempted 4 times to insert the NG tube and it would not insert properly. They let her rest the trauma off last night and attempted again this morning 3 more times with no success. Karina was unbelievably brave and willing for this procedure. Dwight and I have never seen her so cooperative for a miserable procedure. She truly wants to be fed and is very hungry. She has not eaten any food since Wed but is taking all of her pills with orange juice. We are unclear why she can not eat. She says that it feels like the food won't go down.

Tomorrow she will have the NG tube inserted with fluroscopy (sp?)to insure proper placement in her stomach. Please pray for our patience regarding the long delay in getting this placed and for success tomorrow.

Karina has slept all day today. She is extremely weak. She is unable to sit up alone. She is able to walk short distances to the bathroom with moderate assistance. She has gotten out of the bed once today.

Karina's primary bone marrow doctor came by last night and feels that this is probably viral in nature. The three areas of possibilities are: 1. side effects of cyclysporin which is an immunosuppressive drug that Karina has been on since transplant. We have taken her off this drug and gone to another drug. 2. A virus that may or may not be identified and is traveling through her nervous system. 3. relapse of cancer. Each one must be addressed.

The doctors do not have any reason to believe that the cancer is back. Her blood counts are very good and she does not have a fever. They know that to be thorough, they must eliminate this possibility. Karina is due for a bone marrow biopsy and spinal tap the end of March anyway so the procedures on Tuesday will just be a few weeks early.

The MRI will tell us more about Karina's neurologic functions and possible changes from the last one 2 weeks ago. Please pray that there are no changes for the worse.

Karina is scared. She simple can not understand what is happening to her body. We have no answers for her. Please pray for our family. The boys are amazing and we are so proud of them but it is beginning to wear on them. Please pray for Dwight and I to stay optimistic, patient and wise in our supervision of her care. We are closly watching every move as we feel each decision is critical at this time.

God has a plan. We are confident that he will never leave us nor forsake us. We know that there is suffering here on earth but we don't want to consume ourselves so much that we miss the blessings all around us. Our faith in God is firm and we need to relay that to Karina and she needs to see our faith.

This is a bringing our family to a level of saddness that we have never experienced as we see Karina so helpless. The fight is not over in us or her. The good news is that her blood is healthy. Thank you for your faithfulness to pray. We love Karina and know that you do too!! Please keep praying for Karina!!

Blessings,

Dana

Friday, March 9, 2007 11:47 AM CST

Yesterday was a long day for Kairna. She has continued the "NO" to food not just "no" and her body has become very weak. Her symptoms seem to be getting worse as the week goes by. I called the doctor yesterday to let them know what they would see today her at our clinic visit.

I am writing from the all too familiar inpatient computer for parents. The doctor and nurse practitioner and doctor took one look at they are admitting her. She will receive tube feeding through the weekend with an MRI, bone marrow biopsy and spinal tap scheduled for Monday.

Please pray for her.

Dana

Wednesday, March 7, 2007 8:28 PM CST

Please pray for Karina. We arrived home yesterday (Tuesday) afternoon to happy brothers and a weary Karina. She is struggling with the severe neurological effects that this virus is having on her body. She has very slurred speech, unsteady balance, poor motor coordination and overall muscle weakness. She is eating almost no food but drinking very well. She needs help to the bathroom and to be fed because her hands are so shaky. Dwight and I feel her taste buds are affected and she has no desire to eat. She talks when she needs something but otherwise lays on the sofa resting/sleeping.

This change in Karina is almost more than we can bear. To see her suffering and struggling with the simplest things is very disturbing.

The neurologist feels that the effects we are seeing will gradually disappear but I also feel that they did not get a very thorough evaluation of her because she was uncooperative. I will request a follow up visit on Friday to see if they can better diagnosis and help us problem solve these challenges.

Some of you have heard my personal story of applying and being accepted to occupational therapy school back in 1994. The moral to the story is that God had a plan and purpose for my life to guide me through school. I have always been grateful for a wonderful occupation that has so much purpose and function for people. I knew in my heart that God had another reason for my education and now I know why................to help my daughter.

Please pray for Karina:

Mental strength and understanding
Physical strength
Virus is killed by medication
No further neurological side effects
Safety for no falls
Realizes the importance of eating
Peace in her heart
Comfort for God
Rest for her body
A miraculous healing

Thank you for faithfully lifting Karina up in prayers.

Blessings,
Dana

Monday, March 5, 2007 6:19 PM CST

Miracle! Miracle! Miracle! Karina's vision is no longer blurry. I was assuming that her vision was no different this morning and put her patch on trying to allow her clear vision out of one eye. She took it off and said that it was not helping. A few minutes later I asked her if she was seeing two of me or if I was blurry and she said no that it was clear. Praise God for this gift of sight for Karina.

Karina remains very, very weak and tired. She prefers to lay down and sleep/rest which she did all day today. She got up and walked for physical therapy and the neurologist happened to be in the area. The doctors are very optimistic and were pleased with her progress. Her skin is very red and rashed from the graph vs. host resurfacing from the infection. She took a long warm bath this morning and I have also been using a different degergent so these two things may be contributing as well.

Today was a wonderful day as our friend Robin came for a visit. She brought Chic-fil-A for Karina and a large dose of friendship for me. It was a wonderful and busy afternoon together. Thank you, Robin for your time.

Most of today was spent preparing for Karina to go home tomorrow. She will be on IV antiviral 3X a day, antifungal 1x a day and IV fluids through the night to keep her kidneys flushed. A nurse will come to the house tomorrow afternoon to teach me what I need to know. We will be very busy with nurning duties for the next two weeks. We will come back for a clinic visit on Friday.

Please pray that Karina regains some energy soon. I have never seen her this fatigued before and pray that she feels renewed at home and that we can "carry" her back to health.

God is faithful and we are daily feeling his presence.

Blessings,

Dana

Sunday, March 4, 2007 8:05 PM CST

Happy Birthday, Torin!! Today was Torin's 5th b-day and we brought the celebration to Karina. Thank you to our parents for bringing the gifts and cake to Karina. Her room is so small for all of us but the family together was really nice. He received lots of Legos and a game boy.

Dwight and I took Braydin and Torin to the National Zoo here in DC, about a 10 minute drive. It was a cool and breezy afternoon but great fun to see the animals all frisky in the cool weather and no crowds to contend with. The time together is so special but carries a void without Karina. It is amazing how God has a special role/place for each family member. Torin had fun and that is what was important.

When we arrived back at Karina's room, she took one look at her brothers and smiled. It is part of the healing process, mentally, for Karina to be in the presence of her brothers. The tough part is saying goodbye to them.

Today was a pretty good day for Karina. She remains very very weak from head to toe. So much so that at times her speech is slurred and her eyes wiggle beyond her control.

Karina remains free of fever, praise God for that tremendous answer to prayer. That is one of the "get out of jail" tickets she needs. Her skin has developed a pretty bad rash which is the graph vs. host resurfacing. It has done this in the past and cleared on its own. We pray for that to not progress. This is very important.

Tomorrow we will see her bone marrow doctor and he will give us his assessment of her and maybe a time frame when we can go home. Karina's magnesium and potassium have been low but responding to suppliments. She remains on one antibiotic for the previous sinus infection she had and antiviral medication. Not much and ones we can administer from home.

Our prayer is that the rash goes away, her fevers remain at bay and that she begins to regain energy. The vision is still blurry but not double. Another praise!!

We feel God's presence, his angels surrounding Karina, and daily answers to prayer. Thank you for walking this journey with our family. We feel embrased by your words and blessed to call you friends. Your deep faith in our Heavenly Father is evident as your lift Karina in prayer.

Blessings,
Dana

Saturday, March 3, 2007 8:03 PM CST

Today has been an amazing day of healing for me personally and for Karina. Praise god.

This week has been filled with discouragement and today we are encouraged. Dwight stayed the night last night and most of today. Karina was up early and asked to be in the chair and stayed there most of the day. Her blood counts have returned to normal!!!! Praise God. She has not had a fever today and these are both very good signs. Today for the first time since her transplant, she is crying to go home. She misses her brothers and askes for them frequently. This tells me that she is feeling better. I have told her that she needs to eat and walk!! The 3 outstanding spinal fluid tests are still pending. The eye doctor did recommend patching one eye at a time for 6 hours and allow her some relief from the blurred vision. I am very anxious to see if she feels better tomorrow and is more stable walking. Please pray that this is a solution until the infection clears and her cranial nerves become uninflammed.

Today was a day of healing for me. I had a wonderful surprise from a sweet friend. Thank you so much Wendy and Scott for a "Dana Day"! Wendy worked hard to schedule the one hour Swedish massage and delicious lunch all to give me a break. Lunch held a huge surprise!! Wendy and Dwight had contacted all of my dear friends in the area to meet at the restaurant and surprise me. It was the most special lunch I have ever had!! to my dear friends from childhood and military life,Wendy, Cindy, Christine, Erin, Morgan, Mary, Glynda, Bev and Amy. Thank you so much for the precious time you took to spend a few hours to encourage me. I feel your love and care and am greatful for the memories we have shared in the past and look forward to more in the future.

Please keep praying!!! Karina is healing and we give God the glory.

Blessings,
Dana

Friday, March 2, 2007 8:57 PM CST

Dear Prayer Messangers,

Thank you for carrying Karina to God in pryaer today. She had a good nights sleep and an okay day. She remains with very blurred vision although her visual acuity remains 20/30 in both eyes. There were many doctor visits today and two meetings with her bone marrow doctor.

The results of the MRI were very good. Actually less concern from those results than what I wrote about last night. Her brain and spinal cord actually look very normal. All tests on her spinal fluid have come back negative with 3 still pending. We pray in many ways that one of these shows positive because it would give us answers and possibly a treatment plan.

Our prayer for Karina is that her sypmtoms begin to subside. The opthamologist feels that once the infection begins to respond to treatment, her vision should clear in 3-6 months. She feels that because it is infection/inflamation related that there is no permanent damage. Let's pray that her vision clears much faster!!

Karina is very tired, very quiet and gets out of bed only to go to the bathroom. She is not interested in doing any crafts because it makes her feel nausous to move her eyes in certain directions, like down and to the side. We struggle to keep her alert and interested during the day.

Dwight cancelled a trip today and spent the day with us. She loves her daddy being around with his many jokes and great stories. The boys came in this evening for our family movie night. We piled into Karina's little room with lots of hospital cafeteria food and the boys were thrilled. They are troopers and have become very flexible.

The doctors discussed one very scary problem. The spinal fluid looks clear of cancer cells. They would consider doing another spinal tap on Tues or Wed and possibly a bone marrow biopsy if she does start to feel better by then. Leukemia cells are treated through the blood as they are produced in the bone marrow. These cells can hide/escape to the spinal fluid. This is why Karina received so many spinal taps with the injection of chemotherapy into her spinal fluid prior to her relapse. She never had cancer cells there but there is always the risk that they may show up. The doctor said he wanted to show "all his cards" today just so we know what is in the very back of his mind. He did say that his gut does not think that the cancer is back.

We are searching for peace in our hearts for precious Karina, for her suffering, her pain at times and for God's purpose in her and our lives. We are fully seeking His divine power to take control of Karina's body. Please pray that we can continue to stay uplifted for Karina, faithful to God's word and witnesses to all we meet.

Please pray that Karina's fevers go away. She received antibodies today which we pray allow for her body to fight off the infection she has.

God is providing for our needs. Praise God for our insurance that we have not had the burden of paying the astrnomical bills for her care. All we are asked to do by God is believe his word that he will not leave us or forsake us, nor will he give us more than we can handle, cast all our cares upon him knowing that his will for Karina is planned.

We love her and know that you all do too!!1 Thank you for pryaing, please don't stop!!

Blessings,
Dana

Thursday, March 1, 2007 7:20 PM CST

Dear Prayer Messangers,

Please lift up Karina tonight. Today was a long day for her. Her MRI went as scheduled at 10:30am. The doctor gave her the "sleepy" medicine at 10:30 am on the dot. Karina immediately went to sleep without a fight. The MRI machine malfunctioned about half way through the test and a technician had to be called in to make the repair. They extended Karina's sedation to complete the test which lasted until 1:30 pm. This was a long time for her to be asleep and when she woke she was very confused and angry. As the medicine wore off, she became more civil and Dwight began to tell her stories which she loves to listen to.

Karina has slept most of the day with some nausea. Her eyes remain very blurry and gittery. They are constantly moving when you look at her which is so hard to see as a parent.

The initial look at the MRI by the neuroradiologist showed no major infection, no strokes, no tumors, no abnormalities beyond the general physical changes from the full body irradiation back in Sept. It did show some swelling in the cerebellum (I am blank on the correct spelling)whcih controls balance and equalibrium. We are praising God for the good news but still very concerned by the unanswered questions. What is wrong with her eyes and what is the infection she is fighting. Please pray that we will feel God's mighty hand on Karina, that we feel His presence, that our hearts are fully devoted to trusting our heavenly father and that we communicate our faith to Karina.

Tonight my parents and the boys came for a visit. Karina was quietly pleased to see them not showing much emotion until it was time for them to leave. We lifted her out of bed, changed her dirty clothes and "forced" her to take a few steps to the door. She hugged Braydin and Torin so tenderly and passionately and asked them to come back tomorrow to visit her. Dwight and I felt our emotions go beyond our control wathching the bond that these three siblings share. God has placed that there for a reason and we felt that her healing was sparked by their physical touch.

Praise God for Braydin and Torin. We are so proud of their flexiblity to meet Karina just where she is. The expect nothing more or less of her but love her all the same. My parents have done a super job this week balancing many balls at our house. Thank you, Mom and Dad.

Today has been a long day. We are waiting for more tests to return from the lab in the next several days. We pray for smart doctors that can put their heads together for a thorough diagnosis.

Blessings,

Dana

Wednesday, February 28, 2007 8:24 PM CST

Dear faithful prayer messangers!!

Karina continues to have very blurred vision. The MRI will not be until tomorrow, Thrus at 10:30 am. She will be sedated for the hour and a half test for maximum results and accuracy.

Today was a day filled with precious and supportive phone calls, visits from hospital staff that we grew to love back during our lengthy bone marrow stay and watching Karina's favorite movie, 101 Dalmations. We felt a huge imbrace from the staff here today. Thank you to many of you who called today and signed the guest book. I will have Dwight print the guest book at home and bring them into her. I pray that she will rest her eyes and listen to each message and feel you prayerful words of love and encouragement to her.

The next few days are so important for thorough and accurate information regarding the infection, MRI results and medications needed. I feel confident that the doctors are on the right path. I feel peace that only God can provide. Please pray for Karina's comfort while her eyes are so bothersome and she feels so poor. She is very weak but generally in good spirits.

Thank you for your love and support!!

Blessings,
Dana

Tuesday, February 27, 2007 6:48 PM CST

My routine introduction of family and friends must be changed. Each of you who have logged onto this website are more than just family and friends, you are powerful prayer partners to our family. I must address each of you as faithful prayer messangers. You are carrying our precious Karina to God's throne of grace. Thank you for your faithfulness.


Karina, Dwight and I came in this morning for Karina's spinal tap. The procedure was done in the clinic which was generally miserable as all of them are. Karina yelled through the entire thing, asking for more sleepy medicine, asking if it was over etc........She woke very tired and has slept most of the day either in a bed, on a chair, in the wagon or on Dwight's lap.

We went to the eye doctor while waiting for the results of her spinal tap. The doctor saw a few things of concern similar to those things we mentioned yesterday. The spinal fluid results were back after our apt. The spinal fluid has too many white blood cells. the good news is that they are perfectly normal and not cancer cells, the bad news is that this is a sign of infection. The neurological changes that we are seeing in Karina support an infection. What exactly, we do not know. The viral and bacterial tests that have been sent off will not be back for 2-5 days so we were admitted to the floor this evening.

Karina is not in isolation although she is in a bone marrow room. She will receive daily IV of antibiotics, antifungal and antiviral to cover all the bases until the tests tell us more. She is now under the care of infectious disease, neurology, hemotology/oncology, physical therapy (she is weak and a bit unsteady on her feet) and anyone who stops by her room. One strong possibility could be menegitis, a virus or bacteria of any kind.

Tomorrow Karina will have an MRI. She has not had one before so pray for her to be calm and not affraid. I feel like I do not want to know anymore than I already do. Karina has not had any neurological problems in the past and we felt that this precious part of her body was spared. At this point, there is nothing permanently damaged and we pray for God's continual protection over her.

Dwight and I have felt devistated regarding all of this new information. The pain we feel for Karina's suffering feels tangible to us. It is beyond word description but unnecessary to write about for anyone who has a child. We do know that God has a plan. Our faith is being tested, but than, what is faith if we only talk about it. We are determined to continue our Christian walk. We know that Karina has Jesus in her heart and we pray that our trust in the might healer is understood. We don't know how much a 6 year old can demonstrate faith, but we do know that God is providing comfort for her.

Please continue to pray. I will write again tomorrow evening.

Blessings,

Dana

Monday, February 26, 2007 8:19 PM CST

Dear Family and Friends,

Today Karina's blurred vision continued so I called the nurse advice line. They wanted to see Karina so we packed up around noon and headed in to Children's. The doctor examined her eyes and felt concern regarding the end of her retina as well as slight nystagmus vertically which is unusual. He sent us immediately for a CT of her brain.

The result of the CT when compared to her pre-transplant scan showed a slight shrinking of the brain and slightly larger ventricles. The chemotherapy and current medications she is on support the shrinking pattern which will correct itself when the current medicine is complete around the one year post transplant time. The enlarged ventricles may support infection in the cerebral spinal fluid and the blurred vision.

Tomorrow at 8:30 am Karina will have a spinal tap to draw fluid for testing as well as check the pressure in which the fluid comes out.

The good news is that the CT scan showed no tumors and no stokes or bleeds. Praise God for ounces of good news.

Karina is scared and so are Dwight and I. We are praying hourly for healing of Karina's precious body. There is so much life in Karina's future if we can only capture blessings in each day, find sunshine, see God's love for her and be thankful for smart doctors and good medicine.

Please pray for Karina and the results of the test tomorrow. We ask that God take away the blurry vision to allow Karina to feel better. We capture the world around us through our eyes and we ask that her vision be restored.

We want you all to know that your guest book entries are priceless to us. We savor each word. I have 10 pages printed to read to Karina tomorrow while we wait for her procedure.

Blessings,
Dana

Sunday, February 25, 2007 2:15 PM CST

Dear Family and Friends,

We are riding the roller coaster this weekend. Karina had two "good" days last week. Yesterday she woke with blurred vision, nausea and dizziness. We have added potassium tablets to her medicine but the doctor today assured us that should not cause these side effects. WE are baffled and concerned. She feels rotten. So keep praying as you so faithfully do. We love her more than life itself but our heavenly father loves her even more. We have to fully trust Him to heal and comfort her body.

We got 5 inches of snow, at least, just this morning. The boys had a wonderful time as did Dwight and I. Karina is looking out the back window at the snowman and a 7 foot tall snow monster in our backyard. That was a bright spot in our day!!

We head back to Children's on Tuesday and we pray that Karina feels restored by then.

Blessings,

Dana

Thursday, February 22, 2007 8:56 PM CST

Dear Family and Friends,

Just a quick update to tell you that Karina had a wonderful day today. The energy and life seemed to pick up speed all day today and she is beginning to feel better. Her stomach pain is going away and we feel so encouraged. Please pray that her potassium level is rising. We have a doctor's apt tomorrow.

Thank you for your prayers. We asked God to reveal himself to us and he did.

New photos!!

Blessings,
Dana

Wednesday, February 21, 2007 8:48 PM CST

Dear Family and Friends,

I had been promising myself that to accurately update this website I need to do it when I am not physically and mentally exhausted. This past week that has been "never" so here goes.

We headed to Williamsburg this weekend to visit my parents, grandparents and sister and her family. It is such a treat to be away from home in another "safe" place for Karina to interact and for us to enjoy family.

Saturday morning we loaded up the car, Karina not feeling well and with much determination headed south. The farther we drove the redder Karina's face and skin were getting. By the time we arrived at my parents Dwight and I were quite concerned. When Karina was first diagnosed with graph vs. host disease, she had a sinus infection and became very red all over. Our hearts were sinking as we saw history repeating itself before our eyes. Dwight, being very observant, wise and perceptive, felt that Karina might be showing signs of allergic reaction to the antibiotic. I was not convinced since it was amoxicillin which is nearly over the counter these days. I called the on call doctor and she suggested we change the medicine. We got another medicine started that evening and it seemed to do the trick. Since Sat, her skin has been improving daily.

Tuesday's apt confirmed the fungus is shrinking, the red skin may not be more graph vs. host (yea!! as that would have devistating affects on her health), her potassium is near danger lever, she remains on steroids at the same dose for at least another week and answers to many of my questions.

Karina has eaten very little the past week. She has continual stomach pain which we can't seem to get rid of. I have every food and drink known to mankind that has a high potassium content to keep her out of the woods, but it is very hard to force Karina to eat when she feels so poor.

Please pray for Karina's mental well being, physical pain to go away and improvement in her health to begin removing some of the medications. The side effects have been devastating to us and Karina's body.

We received more school work from her teacher today and she is so excited to dig right in.

Dwight and I are very tired. Please pray for our strength physically and mentally, our faith and own health to remain steady.

Blessings,

Dana

Friday, February 16, 2007 9:55 PM CST

Dear Family and Friends,

Thank you for your prayers. After a very tough morning for Karina we received some good news. The preliminary look at the CT scan shows significant shrinkage in the fungal spots on Karina's lungs. The doctor said that the CT was performed in a way this time that shows more slices of her lungs. There is one spot on her right lower lobe more obvious than before but may be because of the different image.

Karina has had a cold this week and the CT included her sinuses and thank goodness for that because she has a sinus infection. We were able to start on antibiotics tonight which will run for 3 weeks. This was a blessing because we do not want to wait until she is sicker and develops a fever.

Today she had no fever and the doctor decided that she did not need blood work done. That was good but unfortunately did not make our day at the hospital any shorter.

Karina is so very tired these days and we are praying that we can get her on the road to recovery to regain some energy. She had a play date yesterday with one of her very first friends from OK that now lives here just 10 minutes from us. What a pleasure to see her with fiends again. Thank you Amy and Allyson!!

Please keep praying about her hair. It continues to fall out and everyday she asks if it will grow back. We think it is already coming back in!!

This week has held many reminders for me of God's grace and provision for our family. I have been reminded through friends, emails, reading and pure conviction on my heart. I was sharing with a friend that my faith remains firm, but I do not always write to you of the daily answered prayers. God is present every minute of our day, knows every hair on Karina's head, promises to never leave us or forsake us, and knows our hearts deepest pain. God is walking me through minute by minute, on most days, this journey of life and I am determined to give God the glory through it all. The burdens of life can suck you dry and I am learning to conquer the defeated feeling by placing my faith totally in God daily.

Blessings,

Dana

Tuesday, February 13, 2007 7:25 PM CST

Dear Family and Friends,

Karina had a pretty good day. We headed into DC for her appointment at Children's before the weather got bad.

Today we saw three good signs in Karina's blood. She woke today without a temperature for the first time in over 2 weeks. Two levels in her blood, one that supports inflammation and the other infection, were both low today. That is good news. Her overall white blood cells were high but not totally unusual. Her stomach pain continues off and on and the doctor said we could try acidophilus. May or may not work but worth a shot.

I may have mentioned previously that Karina's hair is falling out, again. It was growing back dark and thick but we think the graph vs. host disease has affected the hair follicles. The hair has fallen out in large sections on her head. It is very sad to see because it looks rather strange. Karina is keeping the pain in but knows that she has to be patient for the hair to return one day. Dr. Kamani would like us to see a team of dermatologists at National Institute of Health (NIH) who may have a treatment plan for Karina. I ask you to pray about this. It seems very simple and an obvious decision but I am struggling with many aspects of this idea. I need more information and a few nights sleep before I elaborate on what my imagination is thinking. I will keep you informed.

Please pray for Karina. Dwight and I saw a prayer plant in our bathroom that we have had for many years. In the past few days all of the leaves have started to wilt and dye, but in the center of the plant is a cluster of brand new, dark green, healthy leaves that have sprouted. It reminds us of Karina and her life. We are praying that her body begins to do just the same.

I still feel like I do not "really know" how Karina is doing. This is a long and slow journey for her with many days of fatigue and discomfort. Other than pain, Karina really does not complain or say much about what is going on. We are careful not to feed her ideas/feelings that we may have but try to ask her what she is feeling. We have a play date scheduled for Thursday and I am so hopeful that this is the start of many more for her.


God provided a ray of sunshine for us today with good blood results and we give Him all the glory. The doctor is anxious for the CT scan this Friday to see what the fungus is doing. We pray that the medicine is attacking it and that the scan shows improvement.

Thank you for your faithfulness to pray and sign the guestbook. It amazes us the love and support in your messages to Karina and our family. The journey feels so lonely at times until I read the guestbook and I am quickly reminded of your love and care for us. I sincerely thank you.

Blessings,
Dana

Saturday, February 10, 2007 8:35 PM CST

Dear Family and Friends,

Karina and I had a fun outing on Thursday, her 2 year anniversary from diagnosis. We went to a paint your own pottery store and painted special trinkets together. It was so fun and I think Karina enjoyed herself.

Karina is doing okay. Yesterday we started our day early at Children's for blood work then headed to Walter Reed for an eye exam and echocardiogram to rule out fungus in those two areas. Karina's vision is good and there was no sign of fungus there. Praise God!! We were not expecting an echo but thanks to our friends at Walter Reed they were able to squeeze us in and prevent another trek on another day. The echo did not show any fungus as well and the doctor was going to look at one more picture from a different angle to be extra sure. It was an extremely long day for Karina and we arrived home at 5:30 pm last night.

Karina continues to have daily fevers and stomach pain. We are going to try a dairy free day tomorrow and see if we can pinpoint any cause of the stomach pain. Please continue to pray for her. She is very quiet these days. She looks good but continues to be tired most of the time.

My sister, Debbie, and her daughter Carly are visiting for the weekend and it is such a wonderful treat for our whole family. Please pray that Karina can enjoy them and feel better tomorrow.

We really enjoy the guest book entries and draw strength from your personal and encouraging messages. I often feel guilty for not replying back, but please know that taking care of Karina and keeping the house running are more than I can handle on most days. This too shall pass, is what my mom has been telling me for the past 2 years. Then I realized it is a Bible verse. Aren’t mom's wise.

Blessings,
Dana

Tuesday, February 6, 2007 7:46 PM CST

Dear Family and Friends,

We have made several more trips to children's in the past week for what seems to be non transplant complications but side effects from all the medicine. Karina has had stomach pain all weekend and developed severe knee pain. The doctor thinks the knee pain is bone pain from the steroids and the stomach pain is from the new antifungal medication. The daily fevers have been off and on since Jan. 4th and now are present every morning. The fever goes away by mid day but seems to leave her feeling worn out. We are lowering her steroid dose very slowly to prevent the return of the graph vs. host disease but in the mean time are allowing for many more side effects to surface.

Please pray that the graph vs. host disease stays at bay to allow her steroids to be tapered. Once the steroids are tapered, the other immunosuppressive drug will be weaned and then her blood pressure will come back down. Once the blood pressure comes down that medicine will be eliminated which has caused her heart rate to stay around 150 beats per minute. This has gone on for months and she is tired. I think her body is tired. Need I say more regarding side effects of medication? Oh, once the steroids are tapered, the fungus should go away as her body will be able to fight it. The cycle is vicious and we are just praying for her precious body to stay strong and hold on a little longer. God knows the timing of each step that her body must go through and His timing will be perfect. We trust Him fully.

A dear friend wrote to me this week and described a story that she heard during a national tragedy a few years back. It described life as a child looking at her grandmother's needlework. It is so beautiful on the front, perfectly stitched but if you turn it over, it is a mix of tangled looking colors going all different directions without any rhyme or reason. Our lives seem like the back side of the needlework, terrible mixed up at times and making no sense. But, when God is the master needle worker the project is perfectly planned. We are learning daily to trust in God as I visualize this story in my mind. It has been helpful.

Please pray for Karina as we feel the next few weeks are critical for her body to stay strong, begin to fight the fungus, stay free of graph vs. host disease, minimal stomach pain and no more side effects.

She will have an eye exam next week to be sure that the fungus has not spread to her eyes. She will have another CT scan next Friday to see if the fungus is changing in anyway. Please pray that the daily fevers go away. Fever is a sign that she is fighting something, we just don't know what. Many, many different blood tests have been done over the past 2 weeks and each one has come back negative. We are grateful for this super news but at the same time, it would be nice to know what fungus she has to confirm that is what she has. For now, just pray for Karina.

Blessings,
Dana

Thursday, February 1, 2007 7:32 PM CST

Dear Family and Friends,

Tonight I feel compelled to share of God's healing today for Karina. Not healing for the long road ahead but for answered prayer today before my very eyes.

Karina asked me to sleep with her last night which tells me that she does not feel well. She woke at 6 am crying that her knee hurt. This has happened once before and went away quickly. We got up; she had Tylenol and basically laid on the couch for the rest of the morning and into the afternoon. The knee pain came back at times, she developed another fever (103), complained of blurred vision, dizziness, headache and nausea. All bad signs and never before has she presented so sick at home.

I was waiting for a delivery from a home health agency for the new antifungal drugs and supplies to arrive. Then a few hours later the nurse arrived to explain how to administer the medicine, flush the lines etc...........

Around 3 pm, Dwight came home as he was very concerned; she sat up without being dizzy, no headache, no blurred vision, hungry for lunch and no knee pain. Dwight would tell you his mere presence perked her up, but I will tell you that God heard my plea to heal her and to take away the pain.

Their is no greater pain than to see your child suffer. We are approaching the 2 year anniversary of her diagnosis, Feb 8 with great fatigue physically and emotionally but also with volumes of blessings bestowed on us and out of sight faith in God. He is present with open ears to hear our prayers. Keep the faith and keep praying as our journey with Karina continues.

We head back into Children's tomorrow for more blood work, hopefully results from previous blood work, an exam and maybe more antibiotics.

Thank you so much for signing the guest book. To see old friends from many years ago faithfully praying for us means more than I can express in words. Please know we feel your embrace.

Blessings,
Dana

Wednesday, January 31, 2007 8:48 PM CST

Dear Family and Friends,

Karina had an appointment to receive another dose of antibiotics and a new antifungal drug today. Both we given to her and she tolerated them without problems.

Today’s appointment was filled with information regarding the fungus growing in Karina's lungs. The blessing is that it was caught on the early side as the lesions are small. There are 5 or 6 and the largest is not enough to biopsy. We are grateful to God for his provisions. Karina will not have to have a biopsy at this point. The new antifungal drug is new on the market and has had good success at getting rid of fungus.

Karina's body is a breeding ground for fungus and will continue to be while her immune system is suppressed. This will continue to be an issue while she is on steroids and cyclosporine. This healing process is going to take a while from my perspective. We will have daily IV antifungal medicine for at least a month. She will have another CT scan in two weeks to see if the lesions are decreasing in size.

Please pray for the medicine to work and work aggressively. Karina's poor body is worn down and we are praying for her new immune system to keep fighting. The doctors are not "alarmed" but concerned regarding her health.

Keep praying as I know you have been so faithfully. Karina had a great day today. She seemed to feel so good this afternoon and was in great spirits. We love to see the sparkle in her eyes and hear that giggle we so often miss.

Dwight and I feel another "punch in the gut" as we were not expecting this latest infection. But we do know that we can do all things through Christ who strengthens us. God is working in our lives and Karina's in ways we don't always know. But He is present and we feel His grace and mercy.

Blessings,
Dana

Wednesday, January 31, 2007 0:09 AM CST

Dear Family and Friends,

It has been a long day but one that has provided us with some answers. We left the house this morning at 6 am for Karina's CT scan. She amazingly drank a very large quantity of liquid with contrast in it and also tolerated the injection of more. The scan went well and showed that Karina has fungus growing on her lungs.

Dr. Kamani spotted it and mentioned the possibility while we were in the clinic today and the radiologist confirmed this. The largest mark is 7 millimeters which is very small. It will be treated with a stronger dose of antifungal through her central line (IV). The doctor feels the fungus is from the long term steroid use. It has killed off the T-cells that fight fungus in our bodies. Karina has been on pretty heavy doses of steroids since early September. That is too long and we are praying that her body can soon learn to live without them.

The doctor feels sure this is the cause of the frequent fevers. Karina was extremely tired this afternoon and evening. She was still sleeping by dinner time so we woke her and took her temperature. Sure enough the fever was back. Dwight's mom came over immediately so Dwight could go with me to the ER. Today was exhausting physically and emotionally and the support was helpful tonight. The ER drew more blood and gave her yet another dose of antibiotics.

Tomorrow we will head back to the hospital for more antibiotics and our first dose of the new antifungal drug. Karina will receive the antifungal drug at home from a home health nurse and she will teach me to administer it for the long term.

I do not know anything else about the risks, time frame for healing etc................I will close for now and write more after we learn more about the situation.

Please keep praying that Karina's body can begin to heal.

Blessings,
Dana

Friday, January 26, 2007 8:31 PM CST

Dear Family and Friends,

Thursday was a lovely morning with the kids off school. We were happily watching a movie, which we never do in the mornings, and Karina reported that her head hurt. Her face got red and the fever came back. Dwight was able to come home from work and we headed into Children's for more blood cultures and antibiotics. We were gone all day which was a bummer. My in-laws picked up the boys and treated them to a fun afternoon and Italian dinner out.

This morning we headed back into the hospital for one last dose of antibiotics. They decided that Karina needed a blood transfusion which surely changed our plans again. We arrived home this evening in time for dinner with Aunt Laurie, my parents and in-laws. It was a treat to all be together.

Karina seemed to feel perked up after the transfusion yet slept all the way home. She was very tired tonight after a full day at the hospital. Her skin is excessively dry from the steroid cream and winter air. We pray that it does not crack and become sore. We have been using large doses of lotions but it looks like we need to use more.

The doctor decided today that it would be wise to do a repeat CT scan of her head, neck, lungs, chest and abdomen with contrast to make sure we are not missing a hidden infection. This is wise and thorough even though not very pleasant for Karina. It will be next Tuesday at 7 am. Please pray that they find nothing, that we proceed with the removal of the broviac and Karina's body can move ahead in the healing process.

Today has been a day of emotions for me. I am feeling so sorry for Karina. Her discomfort at times, endless hours in exam rooms at the hospital, isolation from friends and anything normal for a 6 year old. She remains so sweet, without complaint. How does a child not know self pity? Somewhere along the road of life, I sure learned. I am headed for a better night’s sleep and a talk to God now. I will keep you updated if anything else arises this weekend. Let's pray not so Karina can enjoy her grandparents in town.


Blessings,

Dana

PS Thanks to two special friends, Allison and Nancy, for a quick but special lunch today. Definitely the sunshine on a cloudy day!!

Wednesday, January 24, 2007 7:14 PM CST

Dear Family and Friends,

Karina had an apt yesterday as we do every Tuesday. She had her vitals checked, blood drawn and exam by the doctor. Just as he was leaving she said she felt sick and by the time we got to the car, she was sick. We came home and she slept for a few hours, woke up and had a fever. This is the third fever since Jan 4th. She seems to very suddenly feel nauseous, tired and then the fever. This happens in a few minutes. The doctors are baffled because the blood cultures they draw are all negative. They have checked for all sorts of things through her blood and nothing is showing up.

At this point, the obvious answer to stop the fevers is to remove her central line. This is also called a borviac (sp?)and was surgically implanted in her just before her transplant. We most likely would go back to Walter Reed to have it removed by the same surgeon in the next few weeks.

The doctors were hoping to keep the central line in another month or two as it is very convenient for blood draws or transfusions. The upside is that it has been working very well up to this point and it prevents Karina from being stuck with needles. If it is taken out, she will have to have blood draws with a needle in the arm like the rest of us.

So, please pray for the perfect timing to remove this, that the original surgeon is available and that Karina is not scared. She is in favor of leaving it in.

Also, please pray for her red blood cells to rise. She is very tired and pale as that is a side affect of anemia. I know that she could feel better if they gave her a red blood cell transfusion, but they really are resisting allowing her body to work on its own. I am struggling with that decision because she has been anemic for several weeks. The blood starts to rise on its own and the frequent fevers shoot it back down.

I am praying about this because I would like to call the doctors office and ask for blood for the sole reason that her quality of life would be better. I need patience in this area right now.

The fever was gone by this morning and we pray that the extra dose of antibiotics today will take care of the "bug".

The kids are off school for a 4 day weekend so I am excited about them all being home and together. Aunt Laurie (Bruce's wife and the owner of our home) is in town this weekend and we look forward to seeing her tomorrow.



Blessings,
Dana

Sunday, January 21, 2007 8:06 PM CST

Dear Family and Friends,

The week for Karina has been quiet and uneventful. Thank you God!! Karina has been in good spirits, taking a nap a day and doing large amounts of school work the rest of the time. Tomorrow we will meet Karina's home bound studies teacher. He will be coming to our house once a week for an hour or so. I am hoping he can provide Karina with a variety of things to do that are similar to what her teacher is doing in the classroom. She is very excited about him coming.

Today we received a beautiful snow fall, the first of the season. The boys were excited times 10 and were in their snow pants and boots before the ground was even covered. Karina, on the other hand was excited to watch it fall from our back windows. We did get her covered in pink snow gear and down a few hills before she claimed, "Frost bite". She has no resistance to cold temperatures. She will be a new girl when summer gets here.

Karina's rash (GVHD) is clearing very nicely. She is now pealing like after a sunburn. The good news is that we feel this may be the end stages of GVHD and the bad news is that it traveled to her scalp and the hair one half her head has fallen out. So, at this point we pray that it is not traveling around her head. Minimal issue in the grand scheme of things but hair to Karina is "more precious than gold."

I am hoping for no school tomorrow to have everyone home to play and have fun. It has been a wonderful family weekend and we are grateful. I was thinking about this "season" in Karina's life and how peaceful it has been. He body is healing slowly and we all feel such calmness about her health. God is watching over Karina, providing peace, rest, nurturing, comfort and healing. We fully trust in God's plan, not knowing what that is is okay because we know that today He wants us to enjoy Karina right where she is. And that is what we are doing.

Blessings,

Dana

Tuesday, January 16, 2007 8:11 PM CST

Dear Family and Friends,

God continues to show his power and presence in Karina's life. Just as I spiritual feel "flat" He gently reminds me that He is aware of every aspect of Karina's life protecting and healing.

We drove to Williamsburg on Saturday morning and the kids had a wonderful time playing with my sisters 3 kids. Cousins have a special friendship and seem to blend together so perfectly. The boys rode bikes, big wheels and scooters until their legs could no longer pedal it seemed. Karina and Carly were happy with painting toe nails and just being in each others presence.

Saturday evening Karina began to not feel well. We guessed car sickness, fatigue, nausea and anything we could think of. She did not feel like she could take her evening medications and keep them down so I told her I would wake her later in the night to take them. I woke her at 12 midnight, she took them, woke an hour later with pain in her knees (a first). This went on for a couple of hours and Dwight and I decided to give her Tylenol for the pain in her knees. We always take her temperature before giving Tylenol to be sure we are not masking a fever and sure enough she had a temperature of 102.9.

"Shoot" was all I could say. We called up to Children's in DC and the on call doctor was very familiar with Karina which was truly God at work. She called the local ER in Williamsburg to confirm they were equipped to see Karina (drawing blood from a central line, blood cultures, proper antibiotics etc....) the local hospital was and we headed there at 3 am with my very sweet dad. The hospital was OUTSTANDING in every aspect. We very pleased with our care and the staff. Thank you, God, for the knowledgeable staff, calmness in the ER for a Sunday night and overall fantastic treatment.

Of course, the fever was gone by morning and she felt fine. We may never know the cause of this or any of her other fevers but none the less, they potentially are scary and in need of urgent attention.

We arrived home Monday afternoon and Karina is doing great. We went to Children's for a regular apt today. She received a second dose of antibiotics to back up the dose she had at the ER and routine blood work.

Karina's blood counts are okay and the apt went very well. I don't mention the bone marrow doctors often enough but we are so please with each of them. They know Karina's medical history very well and offer generous amounts of time to us answering questions and concerns. There is not one doubt in my mind that God had this assignment to VA, Dwight's job, Karina's relapse, the bone marrow transplant at Children's National Medical Center, Braydin's school and teacher, Torin's preschool, our house and friends perfectly planned well before we would know or understand it all.

God is so faithful to his word. I often pray that as our faith grows, yours does too.

Blessings,


Dana

Friday, January 12, 2007 9:26 PM CST

Dear Family and Friends,

This has been a long week for me. I caught myself saying this week that I am glad that God made time to continue on because I think I would have gotten stuck in the past a long time ago. Braydin and Torin both have been out of school some this week with colds. I seem to continually have a Clorox wipe or bottle of spray in my hand trying desperately to keep the house clean and Karina from getting sick. So far so good. The boys have been so careful to wash there hands and stay a safe distance from Karina.

Today Karina had an apt for blood work and her counts were good. Things seem to be holding there own and we are very glad about that. Last weeks bone marrow sample showed 100 donor cells which I mentioned before. The test also included a 200 cell sample which showed all 200 cells to be XY. This is very exciting as her donor was a male, XY. Female cells would be XX and at this point we do not want any of those since that would say her old blood was present. Her previous blood type was A+ and her new blood type will one day be B+ which is her donor’s type. It has not yet changed which is okay at this point.

Karina still has the rash on most of her body which we are taking steroids for and applying steroid cream twice a day. At times it is itchy but otherwise not bothersome.

This weekend we are hoping to have our first get away and head to Williamsburg to visit my parents, grandparents and sister and family. It is scary to take Karina out of the controlled environment of our house but the doctor says okay. Karina is so excited at the idea!!

She asked again today to have us read the guestbook to her and we love to see her reaction. This is a sign to us that she is beginning to feel better, is realizing that she will not always be sick, feels loved and encouraged by your messages and longs for communication with friends. Thank you so much for signing!!

Thank you for your prayers. We are keeping our faith in God to provide for all our needs on the good days and the bad days.

Blessings,


Dana

Sunday, January 7, 2007 8:28 PM CST

Dear Family and Friends,

All was smooth sailing until Saturday afternoon. We decided to take our first family outing since the weather her has been so wonderful. We headed into DC to view the outdoor monuments with jog stroller and mask in tow. We had a great time until Karina began not feeling well around noon. She developed a fever which steadily rose until we had to head into the ER around dinner time.

I am comfortable in about any place in a hospital but not the ER. I just don't fit in, don't like the pace, don't like the atmosphere and leaves me feeling a little uneasy to have medical staff treating a very unique situation like a transplant patient. I never am confident that they "get it". They diagnosed Karina with a urinary tract infection and she received another dose of antibiotics the same as Thursday and Friday. We returned to Children's again today for another dose. The ER staff did a perfectly fine job last night but I sure felt better today being on the hematology unit and seeing familiar faces again. I appreciated seeing one of her bone marrow doctors today (on a Sunday afternoon). Karina seems to have the graph vs. host rash and intestinal issues again. The doctor said any virus or bacteria can cause the GVHD to flare.

All this to say that with increased steroids (again) and more steroid cream, we should see the symptoms start to subside. We arrived home this afternoon only to find Braydin sick. He has a sore cough, scratchy voice and great excitement to stay home from school tomorrow. He is now wearing a mask and will for a few days until his symptoms go away. He is happy to do this without complaint.

Please pray that Karina gets better and does not catch whatever Braydin has.


Blessings,

Dana

Friday, January 5, 2007 2:49 PM CST

Dear Family and Friends,

100% donor marrow!! Praise God for the great news. Yesterday we had a day of unusual events. We arrived for Karina's bone marrow biopsy in the same day surgery area and her temperature began to rise. It went up to 102.9 and after the doctors consulting, they decided to precede wit the biopsy. Karina had no other symptoms that would explain her fever. The fever has persisted and is slowly coming down today. She does not feel too bad and after taking her own temperature last night and it reading 103.9 she commented that the thermometer must have been broken. Too funny she is and perceptive regarding her health.

The doctor took blood cultures yesterday immediately following the fever and they have not shown any "bugs" or growth as of today. They will be watched for several more days and if the fever persists tomorrow we will go back to the hospital for more antibiotics and cultures. She has had 2 doses of antibiotics at this point through her IV. The only reason she is not admitted to the hospital is because she has a strong white blood count which is good. Her hemoglobin is running low which makes her feel tired, cold and we see dark circles under her eyes.

Today in the office, Karina began to develop a rash and the doctor’s explanation of the turn of events is possibly the graph vs. host disease returning because of lower doses of medication this week. They are making changes and all of these symptoms should be resolved in a few days.

There are still 3 other blood/bone tests pending, so please keep praying.

She is in good spirits and on the mend, I would say. She is playing cards with her brothers in the kitchen and I hear her singing. Now that is music to my ears!!

Karina just sat with me and wanted to hear/read all of the journal entries. She was thrilled and encouraged to hear your praises to her and wishes of congratulations. THANK YOU SO MUCH FOR LOVING HER AND PRAYING FOR HER. YOUR FAITH AND LOVE ARE BEAUTIFUL EXAMPLES OF HOW GOD ASKES US TO LIVE AND SHE IS LEARNING FROM EACH OF YOU.

Blessings for a lovely weekend!! We are still celebration 100% and will be for a while.



Dana

Tuesday, January 2, 2007 7:59 PM CST

Dear Family and Friends,

What wonderful messages on Karina's guest book!! Thank you old friends for signing. Karina has a "different" smile on her face when she sees or hears from old friends. It must remind her of the past and a familiarness of better times.

Our doctor visit today at Children's was uneventful. The lab was running behind on processing blood so we left the hospital with full confidence that her levels would be good and we would not need to return. Later in the day we learned that her blood was okay but a level of medication that is suppressing her old and new immune system was excessively high. This is not good because one it is overmedicating Karina, very hard on her kidneys and suppressing her immune system too much. I called and spoke to a resident this evening and we skipped her evening dose and will wait to hear tomorrow as to the new dosage. I am disappointed that the high level was not caught last week as it was very high then as well. Mistakes happen and I can't blame myself on this one because it is not a level that a parent usually follows. Sometimes I feel like I know too much and therefore there is that much more to think/worry about. Okay God.........it's all yours. If I did not faithfully hand over my burdens to God, I would be in a serious physical and mental decline. Praise God he can and wants to take these cares from us, guide us in wisdom and shower us with blessings for our faithfulness.


Please pray for Karina as Thursday as this is day +100!! This is a milestone and joyful day for all of us. Karina will have a bone marrow aspiration at 10am to confirm that her bone marrow is still producing 100% donor cells. Her doctor has no reason to believe anything otherwise and nor do we. I know that Karina is concerned about the bone marrow biopsy. She has had many many of them and there is pain and discomfort after. I tell you with confidence that Karina will wake up, get dressed and be ready to go as any other apt on Thursday. I truly don't know what Dwight and I would do if she put up a fight. I am so thankful for her brave and courageous spirit.

I have a great story to share with you all. I went to the bank down the street to open each of the kid’s savings accounts last week. I waited a while for the banker and she kindly shook my hand and thanked me for waiting. Over the course of our conversation, she mentioned that she had gotten sick, missed a year of work and has now been back working for a year. I asked her if she was all better and what had happened. She was diagnosed with leukemia (ALL like Karina) when she was 19, relapsed at 21 and had a bone marrow biopsy at a local hospital. She was in the hospital for one full year and had a very rough time during transplant. She is now cancer free and working full time at the bank. She gets tired easily, takes lots of vitamins and has to eat a very healthy diet. She looks healthy and is thankful for the prayers that were said for her. It was so encouraging to meet a survivor and I will take Karina into the bank soon to meet her!!


Please continue to pray for Karina. We feel your prayers, know that God hears them and is answering them according to His will.









Blessings,

Dana

Tuesday, December 26, 2006 9:38 PM CST

Dear Family and Friends,

We hope that your Christmas was filled with the joy of celebrating the birth of Jesus as ours was. Someone today at the hospital asked if we had a fun Christmas and my reply was how could you not with 3 children in the house.


On our way to the hospital today we played an old Michael W. Smith CD called Worship and the first song is about God's enduring love and singing praise to God. We played it loud and sang like no one was listening. Slowly my hearts healing felt the freedom to truly rejoice without hesitation. It was a morning of lifting our voices and our hearts toward heaven.


Today’s appointment went very well for Karina. She now prefers for all her exams to be while sitting in the chair and not on the exam table. Dr. Kamani was agreeable and I think it is a statement of Karina no longer feeling or wanting to feel like a patient. It is a vulnerable feeling to lie on a cold white table with others looking and touching you. I stuck up for Karina and could not agree more.

Today is +91 and Karina still has not needed blood or transfusions in 4 weeks. This is a wonderful milestone and makes us feel very good. Karina's antibodies were low and she did receive a transfusion today for that which took about 2 hours. We leave for the hospital on apt days and seem to return about 7 hours later. It is a long day for Karina but she is a trooper, never complaining.

My parents and grandparents are still visiting and Karina enjoys the company so much.

Thank you all for the guest book entries. We really enjoy reading them and feel encouraged by your words. Thank you for continuing to pray.



Blessings,


Dana

Thursday, December 21, 2006 9:05 PM CST

Dear Family and Friends,

Tuesday morning we set off for our biweekly trek to Wash DC destined for Children's National Medical Center. It is always a tedious drive as we are among the thousand of commuters headed into the city for much different reasons. I often find myself thankful for the years I have been able to be a stay at home mom and the absence of added stress during the past 2 years of trying to hold down a job. Dwight is my number one supporter of continuing my status and I am thankful.

Driving through our town, Karina and I were reminiscing about this being day +83 and I said, Boy, Karina, how I wished 83 days ago that I could have snapped my finger and put us here today." She asked, "Why?" That is Karina for you!!! She seemed to have no reason to have wished the past 83 days away so why should I!! I went on to tell her that I am so glad that God won't allow us to snap days away but instead gives us the courage to face each new day with his promise of unconditional love, forgiveness of sins and a owners manual on life, the Bible. I began to think about the few trials and the many victories we have experienced over the past 83 days. I would not trade those days and the opportunity we had each day to tell someone else about God's love for us and to feel his comfort. I realized how much I truly love life, living, loving my boys and Dwight, giving to others and waking up with choices. Life is hard but with God, all things are possible.

Karina had a very good check up and they gave her a week pass before our next doctor visit. We were thrilled to know that she has had no transfusions in nearly a month. Praise God. Her antibodies are low and she will receive an infusion next Tuesday. We anticipate the results of Karina's Echocardiogram and EKG. She will have a dental visit and pulmonary function test next week as well and that should finish up the post transplant work up. Also, she will have another bone marrow biopsy the first week of Jan to confirm that her bone marrow is still producing 100% donor cells.

Karina is anticipating Christmas and seems to be sleeping less and eating less (good bye steroids). We feel so encouraged to see her with a touch more energy and happier.

We update the photos and these were taken just this evening. See if you can tell her head from her daddy's.






Blessings,

Dana

Monday, December 18, 2006 8:40 PM CST

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Monday, December 18, 2006 8:31 PM CST

Hello family and friends,


I am writing from our new computer and boy does it feel good. I feel that I have not kept you all informed the past 3 weeks. The good news is we know that you are still praying as Karina is doing very well with little to report.

We continue to go to Children's twice a week and Karina has not needed any blood products since Thanksgiving weekend. We are so thrilled to know that her body is beginning to work on its own.

Today was a good day for Karina. She is in good spirits but still has little energy. I think as the steroids begin to go away, she will lose the extra weight she has and her energy will increase. the weather here has been beautiful and has allowed us to be outside more. What a treat for our family this time of the year.

We will go to Children's tomorrow. We will also go to Walter Reed for a once a month breathing treatment to inhale a medicine to protect her lungs. She does not enjoy this so pray for her to cooperate and that it goes well.

We remain in isolation and on a low bacteria diet. Today is day +83. Praise God for protecting Karina's precious body from illness. Everyday I thank God for Karina and another day to love her, teach her and hug her.

She is developing a new look!! HAIR!! She has full grown eyelashes and eyebrows which have made her eyes sparkle like we remember before the transplant. I remember talking with my friend, Larua who said she never thought her son looked sick until he had no hair, eyelashes or eyebrows. Very true. We are so happy for Karina and the hair on her head is as brown as mine. She is so excited about her hair and takes off her hat only for special friends.

We are so excited to celebrate Christmas and the birth of our Savior. We pray that each of you are filled with the spirit of Christ's love this season.

Blessings,



Dana

Monday, December 18, 2006 8:31 PM CST

Hello family and friends,


I am writing from our new computer and boy does it feel good. I feel that I have not kept you all informed the past 3 weeks. The good news is we know that you are still praying as Karina is doing very well with little to report.

We continue to go to Children's twice a week and Karina has not needed any blood products since Thanksgiving weekend. We are so thrilled to know that her body is beginning to work on its own.

Today was a good day for Karina. She is in good spirits but still has little energy. I think as the steroids begin to go away, she will lose the extra weight she has and her energy will increase. the weather here has been beautiful and has allowed us to be outside more. What a treat for our family this time of the year.

We will go to Children's tomorrow. We will also go to Walter Reed for a once a month breathing treatment to inhale a medicine to protect her lungs. She does not enjoy this so pray for her to cooperate and that it goes well.

We remain in isolation and on a low bacteria diet. Today is day +83. Praise God for protecting Karina's precious body from illness. Everyday I thank God for Karina and another day to love her, teach her and hug her.

She is developing a new look!! HAIR!! She has full grown eyelashes and eyebrows which have made her eyes sparkle like we remember before the transplant. I remember talking with my friend, Larua who said she never thought her son looked sick until he had no hair, eyelashes or eyebrows. Very true. We are so happy for Karina and the hair on her head is as brown as mine. She is so excited about her hair and takes off her hat only for special friends.

We are so excited to celebrate Christmas and the birth of our Savior. We pray that each of you are filled with the spirit of Christ's love this season.

Blessings,

Dana

Monday, December 18, 2006 8:31 PM CST

Hello family and friends,


I am writing from our new computer and boy does it feel good. I feel that I have not kept you all informed the past 3 weeks. The good news is we know that you are still praying as Karina is doing very well with little to report.

We continue to go to Children's twice a week and Karina has not needed any blood products since Thanksgiving weekend. We are so thrilled to know that her body is beginning to work on its own.

Today was a good day for Karina. She is in good spirits but still has little energy. I think as the steroids begin to go away, she will lose the extra weight she has and her energy will increase. the weather here has been beautiful and has allowed us to be outside more. What a treat for our family this time of the year.

We will go to Children's tomorrow. We will also go to Walter Reed for a once a month breathing treatment to inhale a medicine to protect her lungs. She does not enjoy this so pray for her to cooperate and that it goes well.

We remain in isolation and on a low bacteria diet. Today is day +83. Praise God for protecting Karina's precious body from illness. Everyday I thank God for Karina and another day to love her, teach her and hug her.

She is developing a new look!! HAIR!! She has full grown eyelashes and eyebrows which have made her eyes sparkle like we remember before the transplant. I remember talking with my friend, Larua who said she never thought her son looked sick until he had no hair, eyelashes or eyebrows. Very true. We are so happy for Karina and the hair on her head is as brown as mine. She is so excited about her hair and takes off her hat only for special friends.

We are so excited to celebrate Christmas and the birth of our Savior. We pray that each of you are filled with the spirit of Christ's love this season.

Blessings,

Dana

Sunday, December 10, 2006 1:03 PM CST

Dear Friends and Family,

Hello!! I am feeling very out of touch as our computer part is "on the way". I don't have to tell you how frustrating computer problems are but I do want to update you on Karina.

Karina is doing well. Her graph vs. host condition is improving grately. The rash and red face are going away and now she just has very dry skin that is pealing. The doctors think of it as a good sunburn, we like to say she just got a free facial with exfoliating peal. Women spend lots of money for new and fresh skin. Karina remains on high dose steroids until Tuesday when we begin the weaning process again. She has very puffy cheeks and tummy with a great appetite. She does not seem to feel bad and has no pain. Her energy level is still low and I think part of that is lumbering around with extra weight. The puffiness will begin to go away in the next few weeks.

Karina has not needed blood products/transfusions in two weeks and we are thrilled. This means that her blood is holding its own and her ANC total is over 4000. We see a difference in Karina's spirits, mood and smiles as they are rising daily.

Our family is preparing for the wonderful Christmas Season with shopping, making cookies and wrapping gifts. But, this year seems more special than others as we appreciate the simple joys in life and the blessing of our children. God has given us this amazing gift of our children and we are thanking Him for each day to be together.

I am sorry for the lag in updates. Always know that no news is good news with us. We pray that you all are enjoying the joy of the season. Thank you for praying for Karina.

Blessings,

Dana

Wednesday, December 6, 2006 6:22 AM CST

Friends and Family,

Thanks for your continued thoughts and prayers for Karina. It has been a while since we updated the web page due to computer issues at home. We hope to have these resolved in the near future.

Karina continues to improve following the transplant. Her past two visits to the hospital for follow-up treatments have gone very well. Her blood counts continue to rise and her spirits and smile grow bigger each day. She has not required a transfusion of platelets or hemoglobin during these two visits.

Karina continues to keep busy with craft projects at home and made a ginger bread house this past weekend with her brothers and Omi (Grandma Sones). She continues to enjoy reading and taking her afternoon nap on the sofa to reenergize before the boys get home from school. Additionally, Karina continues to helped Dana wrap gifts in preparation for Christmas.

Again thanks for your continued support and prayers for Karina and the Sones family. We are forever grateful to call each of you family and friends.

Dwight and Dana

Tuesday, December 5, 2006 6:35 PM CST

Dear Family and Friends,

You have a guest writer tonight. Dana and Dwight's computer is down, so I'm filling in to give you all an update on Dana's behalf.

Karina is doing well! She had a quick trip into the hospital today and left having had no need for any blood products. Her energy level is still a little low, but she is feeling good and is acting more herself. Dana said that a sure sign of the old Karina was some joking going on behind closed eyes during the dinnertime blessing. God's healing hand is at work in Karina! Dana will give you a more detailed medical explanation next entry.

Since Dana said I can say whatever I want, I guess I will. I want to say a word to all of you precious friends and family that faithfully pray and send in words of encouragement to Karina as well as Dana, Dwight and the boys. You are a remarkable group of people that are gifted with some amazing words of encouragement greatly needed during a difficult time. The entries that are sent in are a true blessing to those to who they were written and those of us who are privileged to read them. I told Dana one time that I would love to gather all of you in a room at the same time to feel that love all in one place. Thank you for your heartfelt prayers. Karina is so blessed to have each of you in her life!

Sincerely,
Debbie Bruck
(Dana's sister)

Monday, November 27, 2006 12:51 AM CST

Dear Family and Friends,

Karina is doing very well and we are going home this evening. She is responding well to the steroids and the new antibiotics. The rash is fading and her sinus infection is clearing up. Yesterday was a glorious day for Karina as she was in a wonderful mood and feeling so much better than the past few weeks. We are waiting for the skin biopsy results to determine the correct medicine and doses before heading home. We suspect we will leave around dinner time.

This trip to the hospital was extra special as all our friends happened to be in for treatment this weekend. I enjoy these mom's and their precious children so much and find myself chatting too often. When I return to the room, Karina asks who I found to talk to. We have developed a great support system for each other.

Blessings to you all and thank you so much for the extra prayer this weekend.

Dana

Saturday, November 25, 2006 9:40 PM CST

Dear Family and Friends,

Karina developed a fever late on Thursday evening and we called the doctor and decided to stay home for Karina to get a good nights sleep. The fever was gone by Friday morning but the rash she had developed into a much more serious condition. Her face was red as a strawberry and her eyes puffy. We had an apt on Friday morning and the doctor took one look at her and said we are going to keep her for a few days.

Karina has a mild to moderate case of graph vs. host disease and a sinus infection that we discovered from a CAT scan today. She is now on heavy doses of steroids for the graph vs. host and it is already working. She is being treated with a different antibiotic for the sinus infection which she will take for a few weeks. We felt overjoyed with the good news today regarding the sinus infection and no lung infection. We rejoiced to see her sweet face looking so much more like the old Karina and she is acting and eating like the old Karina.

We are battling a tender stomach as well. We are praying for a few more days in the hospital and then we can go home. Please pray that Karina does not pick up any bugs while we are here in the hospital and that she continues to respond so well to the new meds. The down side of the medicine is that the steroids will bring her blood pressure back up and we will probably be back on medicine for that as well as the puffiness that goes along.

We are so excited to go home. Dwight spent the day with Karina today and I had a relaxing day with old friends. Thanks Richard, Heidi, Dan and Mary. Seeing old friends is so healing for me and I am grateful for their friendship.

Blessings,


Dana

Thursday, November 23, 2006 6:54 PM CST

Dear Family and Friends,

Happy Thanksgiving!! Karina seems to be feeling okay. We have had a wonderful day celebrating Thanksgiving and having much to be thankful for. Karina has had a sleepy day but in good spirits. The rash is about the same as the past few days.

The song in my heart this week is I can do all things through Christ who strengthens me. Steven Curtis Chapman sings a beautiful song about God's strength being perfect when ours is not. In our weakness God is there to let us know. He will carry us when we can't carry on. Raised in His power the weak become strong. His strength in us begins where ours stops. That was a long time ago for me. Praise God for picking me up emotionally and carrying me along when my weak mental power was no where close to enough.

Yesterday Karina received a wonderful surprise. A large box arrived and was addressed to her. The package was from some old friends of ours, the Weigel's. This precious family wrote a letter to explain the contents of the package. Inside the box were 1,080 Get Well cards for Karina that they have been collecting for months. They wrote to many friends, churches, girl and Boy Scout troops, schools etc....telling others about Karina and her condition asking for Get Well cards. The Weigel's desired to help our family in some way from Alabama and what a blessing we have received. Each card is colored, stickered, signed and prayed over. The sincere messages are extremely touching as we read of the faith from those young and old. I can only imagine the smile on God's face as he hears young children praying with full faith that God hears and answers their prayers. We have spent hours reading cards today and yesterday. Karina has asked many times for us to read her more. We have only made a dent in these beautiful cards.

We met the Weigel family when we were assigned to Hickam AFB, Hawaii. At that time they had 4 children and now they have 8. Four of their family members donated their hair (10 inches or more) to Locks of Love in honor of Karina. Thank you so much to this family for touching our lives and thank you to the many people who wrote Karina a Get Well card from the state of Alabama. We know that great people live in Alabama..........Karina was born in Montgomery, AL Sept 3, 2000.

Tomorrow Karina has a doctor apt at Children's and we pray for a good report on her rash and blood work.

Blessings,

Dana

Tuesday, November 21, 2006 3:51 PM CST

Dear Family and Friends,

We are going home this evening. Karina was treated to a Build A Bear party here at the hospital this morning and that set the tone for a wonderful day. Karina woke with a productive cough that concerned me and a chest X Ray showed clear lungs but possible infection that we do not want to fester in her lungs. We will go home on antibiotics and an inhaler to open her lungs and keep them clear.

Praise God for providing for Karina the comfort and peace that she needed these past few days. She did tell me that she was sad to leave her brothers to come back in the hospital. I find it very difficult to "read" Karina because she is often quiet and not a complainer. She internalizes and always offers the answer of "good" when asked. I love her for her sweet spirit and admire her courage when she (nor I) know what is going to happen when we come to the hospital.

We are tapering her steroid dose and she is no longer on blood pressure medication. We are so excited about these changes. Karina has a rash on her legs and is a sign of mild graph vs. host disease which is okay. The doctors would not say those words as to not get me worked up but the nurse said this is a good sign that things are working. We will watch it closely for changes. It is not at all bothersome to Karina.

Karina is receiving platelets and blood today before we go home and we are excited to see the boys and sleep in our own beds.


Thank you for your prayers. We feel peace and much Thanksgiving this season. Please have safe travels and enjoy your families. All three kids requested seafood for our Thanksgiving meal this year. They assured me that the Indians ate fish and therefore the Pilgrims very well could have been eating seafood for Thanksgiving as well. I think we may be starting a new tradition at our house.

Blessings,

Dana

Monday, November 20, 2006 8:07 PM CST

Dear Family and Friends,

We are still in the hospital and hoping to go home tomorrow. Karina is doing well. Her high blood counts yesterday reflected an infection, probably viral, and have returned to realistic numbers, 1680. Her body is fighting whatever she has and we do not expect to see any infection in her blood. Tomorrow at 4 pm will be 48 hours without a fever and if the blood shows no infection, we will go home.

Karina has had a stomach ache and a rash on her legs. The source of the rash is uncertain and the stomach ache is the "bug" she is fighting.

Please pray that nothing else develops and that we can go home and enjoy the Thanksgiving holiday with our family. Karina remains the eternal optimist and I am proud of her. Dwight came for a visit today and that pretty much leaves me in the "chopped liver" food pyramid. Dwight has a way of lifting her spirits even when his are down.

Thank you all for praying for Karina.

Blessings,

Dana

Sunday, November 19, 2006 2:51 PM CST

Dear Family and Friends,

Karina developed some nausea last night and woke with a fever this morning. So, we are back in the hospital. Her blood counts just came back and they are outstanding, 4,320. The protocol requires the fever to be gone for 48 hours and no bacteria growing in her blood. We pray that nothing shows in her blood and we can go home on Tuesday sometime. Please pray that Karina does not develop any infection in her blood and does not catch anything while we are here in the hospital.

We appreciate your prayers for Karina's healing, Dwight and the boys patience and that we are home for a glorious Thanksgiving together as a family giving God the praise for all he has provided.

Blessings,

Dana

Friday, November 17, 2006 10:17 AM CST

Dear Family and Friends,



I want to share our good news. Karina's blood was up to 2900 yesterday from 1430 on Monday. We are rejoicing for the rising blood counts. Karina has been receiving a painful shot every evening to help those white blood cells grow and now she will only require them every other evening and eventually none when her counts rise high enough.


Yesterday she spent the day at Children's for blood work, platelet transfusion and an infusion of antibodies. This was her first time to receive the antibodies and the infusion made her very sick. The nausea and dizziness passed fairly quickly and she slept for the next few hours.


Karina has had cold symptoms for the past several weeks and yesterday they seemed to be worse to me. She is on an antibiotic for the next 5 days to see if that clears the intense runny nose and cough.


Today she woke feeling well and in good spirits. She is enjoying sitting around with Torin this morning watching Star Wars and now pay back requires Torin to watch Strawberry Shortcake with her.


Karina remains in good spirits but with low energy. The highlight of her week was making cookies and delivering them to her friends. She misses being able to play with other girls but I keep reminding her that it is only for a little while longer. We just passed the half way point for the 100 days of isolation. YEA!!


God continues to provide comfort to Karina and is sustaining our family in everyway. We feel blessed to no longer be in the hospital and headed toward a more normal family life.

Thank you all so much for the wonderful guestbook entries and prayers. We feel so encouraged by your words.

Blessings,

Dana

Tuesday, November 14, 2006 9:03 AM CST

Dear Family and Friends,

Karina is doing well. I apologize for the lag in time from my last entry, but we have had computer trouble at our house.


We spent the day yesterday at Children's for Karina's apt and she received a blood and platelet transfusion. Her ANC count (which is the magical # that tells us the state of her white blood cells) was 1439. It is slowly and steadily rising which is so encouraging to us. She has been out of the hospital for a week and a half and we are just loving being home as a family again.



Last night Dwight and I were pondering the long term effects of the high dose chemo and full body radiation she received and without missing a beat, Dwight said, "ya know, she may be different but she will always be our Karina." Other than no hair, eyelashes and less energy right now, we see the same Karina we have always known and that is one with a smart mind, sweet heart, mature beyond her years and beautiful face.


After receiving blood yesterday, she came home with a lot of energy. She is tighter than gravity to her brothers and daddy. It is a joy to see. Hug your kids extra tight today as we all know they are God's precious gift to us.



We head back to the hospital this Thursday for a new infusion. It is called IGIV which is a dose of antibodies that have been collected from many different donors and should help her white blood cells grow and also further protect her from other infections. It will take about 4 hours to go in through her central line.


We love to hear from you all and know what is happening in your lives. I often feel like our souls lost the closeness with our friends when Karina got sick and we miss you all dearly. My dream of filling the dining room with friends and family is on hold for a few more months until Karina is out of isolation. But, know that we long to open our home to you all in the near future.



Thank you for your prayers and today would you please life up a few of our friends who are also battling cancer. Nicole, Kate, Mallory, Brian, Annabel, Lane, Mitch, William.




I have to brag about Altus, OK again. First Baptist Church of Altus is still praying for Karina. Their intercessory prayer team is so faithful to pray and send cards weekly to Karina. That Church is on fire for the Lord, following his commandments and blessing so many with their outreach programs. Thank you First Baptist Church and Brother Jeff!! I also want to thank the other churches and Bible Study groups that faithfully praying.



Blessings,


Dana

Thursday, November 9, 2006 6:54 PM CST

Dear Family and Friends,


Today was a super day as we are seeing the "old Karina" personality return. Each day Karina seems to have a bit more strength and energy. The persistent cold symptoms seem to be residing. We did some school work, played outside and played games today. It is so fun to hear her hoop and holler and do the familiar victory dance when she wins a game against her brothers.



We left early this morning for Children's for a check up and platelet transfusion. We finished by 1:30 pm and were able to spend the rest of the day relaxing. Karina's blood counts were super.......1228. This number was at 690 just this past Monday. We are thrilled and know that God has his healing hand on Karina. She will need a platelet and blood transfusion next Monday.



I was chatting with my friend Nancy today and we were saying how thankful we are for each day of good health. Dwight and I would be in a serious state of worry if we thought about all of the side effects and possibilities of severe health problems in the future for Karina. God tells us to not worry about tomorrow and we feel it our responsibility as Christians to give all our cares to him.


The boys are doing very well. We watch deer in our backyard most every night. Braydin is doing well in school and really likes his class and teacher. He has had to do a lot of growing up and adjusting this year and has done a great job. Someone taught Torin how to talk while Karina and I were in the hospital. He is non stop chatter these days and we love it. Karina has stopped sucking her thumb after the severe mouth sores while she was in the hospital. Her speech is clearer and she is not eating all those extra germs.


The doctor is still watching Karina very closely for signs of graph vs. host disease which can come at anytime over the next several months. This would be a rejection of Karina's body to accept the new blood. We do not expect any signs of this.


Karina is anxious to go for a bike ride and we are so pleased to be doing normal, family things together. It can be tough not being able to go to any public places or restaurants but with our family support, we do not feel frustrated at all. Dad Sones does all the grocery shopping and errand running and happily. Mom Sones came yesterday afternoon and I was able to go shopping. Life sure seems to be balanced and we are just praising God for Karina's health. I can so remember the few days before we went into the hospital and the feeling of dread and fear of the unknown. God delivered us through as He promises to do.

Happy Veteran's Day Dad Sones and Dwight and the many who have served.

Blessings,

Dana

Sunday, November 5, 2006 8:37 PM CST

Dear Family and Friends,




We have had a wonderful weekend home with Karina. The leaves on the trees behind our house are still so beautiful and I told Karina at breakfast today that I think God left them on a little longer this year so she could enjoy them. We have large windows across the back of our house and we lifted the blinds to enjoy the beauty of the many colors.




Karina seems to be doing very well. She has little energy and finds the stairs tiring. This house is 3 times the size of our sweet "hooch" in Oklahoma so there is lots of walking. We have not climbed stairs in a few weeks and she said her legs felt sore. I think each day her energy level will rise. She says she has no pain and feels okay. She is peaceful and quiet, totally enjoying her brothers and being at home.




Karina has walked to the backyard to throw bird seed a few times. She finds it very cold outside and is always hunting for a blanket inside as well. I think when her blood counts are off and her energy is low she seems to be cold. She keeps a hat on her slick head and looks like a pink angel walking around our house. She has helped me cook and still enjoys that things she used to.



Today, we took a family drive to a local park and went on a nature walk. The kids all scootered and then Karina jumped in the jog stroller for the hike. She loved seeing nature and of course Braydin caught some tad poles. It was so good to see her on her scooter even though it was brief.



Tomorrow we head to Children's for the day. Karina will have her blood checked and will receive a platelet transfusion. We hope to not be there all day as the boys are off school and I would love to beat the rush hour traffic home. We are all placing our guess on Karina's blood counts for tomorrow. The boys are now in on the count race.



Dwight and I loved reading the guest book entries and just smile as we feel your love for Karina. Your prayers are reaching heaven for sure but we feel God answering them each day in Karina's life.



She is sleeping so peacefully in her pink room and loves her new bed. We love you all and are so thankful that we have your prayer support and friendship.



I posted new photos.



Blessings,

Dana

Friday, November 3, 2006 9:23 PM CST

Dear Friends and Family,



We are HOME!! We are pinching ourselves and it is true. We give God the glory for the great things He has done in our lives. Every prayer, we thank God for His healing power.




This morning Karina had to take a medicine that was done through inhalation which was very difficult for her to do. She survived and then received a platelet transfusion at lunchtime. By mid afternoon, we were released from the hospital. Dwight came and helped us pack and we took two large loads to the car. Karina asked to see where Dwight worked and we took a detour to see beautiful Fort McNair. It is a very old and very beautiful base located in Wash DC along the Potomac River. Karina just took in the magnificent colors on the trees, the squirrels running around and the beautiful buildings in DC. We even saw the Presidents helicopter and she took a picture of it. We arrived home about 5 pm and the boys had made signs and hung balloons for Karina's welcome home. The boys hugged her so hard when they saw her, ran inside, ran upstairs, ran downstairs and piled onto the sofa and chit chatted just like old times.




My dad must still be seeing pink after painting Karina's room. She loves her bedroom and climbed into her new bed and new pillows very happily tonight. Our house has never been cleaner and I am grateful to my parents and in-laws for preparing the house for Karina's arrival. The hospital has strict guidelines and parameters that we must follow for her care, exposure, food preparation etc..........




Karina will be in isolation and not allowed in public places until at least the 100 day period. Today we are on day +37. Her blood counts continue to rise (today they were 545) slowly and her new immune system will take some time to develop. There are still risks and chances of complication and always the chance of rejection. We pray that she continues to be protected by God's amazing grace and healing hands.



I went to Walter Reed Army Medical Center for Karina's prescriptions last night and left with a brown grocery bag of medications. It makes me feel grateful that we are able to receive her medications free through the military but at the same time sad that a 6 year old needs so much. As I studied the list of medications, I realized that many of them will be tapering off in the next several weeks.




Please continue to pray for Karina's body to heal. Every organ, bone, muscle and joint has been "touched" by the full body radiation and high dose chemotherapy she received and the side effects are staggering. We pray that Karina will have minimal side effects, that she regains her strength and adjusts to her new life with her baby blood.




How can our family thank you all enough for the outpouring of love and support over the past year and 9 months. We truly draw strength from your guestbook entries, phone calls, letters, hugs etc......Your prayer support has allowed our faith to grow as we have witnessed your faithfulness to our Heavenly Father. Thank you and please keep praying as we journey along.



Karina will have appointments at Children's 2-3 times a week. We go in Monday morning at 9 am.

There are new photos. Enjoy!


Blessings,
Dana

Thursday, November 2, 2006 1:58 PM CST

Dear Family and Friends,

God is good, faithful to hear our prayers and is evident in Karina's life. Yesterday her counts rose to 382 and today they are 497. Praise God for numbers that we are rejoicing about.

Yesterday I went home for the day to clean. I did a tiny portion and my parents have taken on the heaping responsibility of preparing our home for Karina. There are specific things that need to be cleaned and wiped etc..........Mom Sones spent the day with Karina yesterday, Dad Sones continues to all the grocery shopping and errand running. Today the Sones are having my old Suburban detailed so Karina can actually ride in it. My dad painted a large wall in Karina's room PINK!!! We are so excited for Karina to see this surprise. There are no gifts appropriate for our parents who have so patiently supported our family through this long journey since Feb 2005.

Today is a busy day here at the hospital. Dwight just arrived for our discharge meeting with the doctors and nursing staff. Karina has had a high heart rate and they did an ekg this morning. Pray that the results show no problems. We do not expect to have any problems but all bases have to be covered before we head home.

Keep praying for the huge transition home for all of us.

Blessings,

Dana

Tuesday, October 31, 2006 7:29 PM CST

Dear Family and Friends,

Slow and Steady wins the race said the turtle over and over in that precious story. Karina's blood took a baby step forward today and she remains well.

Is 6:15 am too early to put on one's Halloween costume? It is to me but not to Karina. She woke, waved at me in my bed, then pointed to the bathroom ready for her morning bath. By 7 am she was transformed to a cowgirl, pink cowgirl hat (thanks Wendy!)and pink and white cowgirl boots, up in her chair and happy to start her day. We have this great room with a large glass pane that looks to an area where lots of people pass by. Everyone waves at Karina and many nurses took pictures of her today.

Karina is in great spirits, on just 3 IV meds a day and all other meds are in pill form. Tomorrow I will go home for the day to clean to prepare for Karina's return home. My mom and dad will help me while Dwight's mom comes to be with Karina. Dwight came for a visit today which was the highlight of Karina's day as always.

God has opened doors for us to share our faith here at Children's quietly over the past 6 weeks. We have faithfully prayed that we are planting seeds of God's love, hope and grace through Karina's life and our experience here.

Thank you for the joyful journal entries!!! God hears our prayers.

Blessings,

Dana

Monday, October 30, 2006 12:25 AM CST

Dear Family and Friends,


You all are prayer warriors and if the word gets out to our friends, they will be hiring the entire Guest Book Friends to pray for them. Friends, you are awesome and have blessed our family tremendously.

The good news is getting better.!!! Dr. Kamani came by this morning and announced Karina's blood is at 250 today and he anticipates her going HOME as soon as the end of this week. Oh, my goodness!! We have prayed so faithfully and we know that God will allow the blood to rise in His time and we will go home on His perfect day. My mom and I rejoiced on the phone for quite a while then hit the panic button as to the very extensive cleaning and preparation we have to do before Karina can come home. Thank you so much to Dwight's brother and sister in law for allowing us the pleasure of renting their beautiful new and spotless house. God did have this all planned out perfectly well ahead of time as our labor could be much more extensive if we were not living in a new home.

Karina is in very good spirits as you can imagine. She is patiently waiting for me to go do crafts with her and I am excited to finish all our projects before we go home.

I have to share a story. I don't often write about how special our boys are. Braydin and Torin are to be commended highly for their tremendous patience, understanding, care, positive attitudes, obedience, love and outstanding behavior through Karina's illness. Not once have my parents, in laws or Dwight called to report bad behavior while Karina has been in the hospital. If you see them in the future, please pat them on the back for being the two sweetest brothers imaginable. I can't control my tears as I am typing this.


Here is my story. About an hour ago, Braydin called to hear Karina's good news right from her. Torin then got on the phone to tell me that he prays for Karina a lot. He said, "see, I can pray for her right now. Dear God, thank you for Karina, please protect her, Amen." Without missing a beat he prayed from his heart and Karina got to hear the sweet prayer.

Well, I will write more tomorrow to tell you all what her counts are. Keep praying as we have begun our climb to keeping Karina healthy...,at home.

Blessings,

Dana

Saturday, October 28, 2006 11:51 AM CDT

Dear Family and Friends,

Boy oh, Boy oh, Boy!!! We are are thrilled to know that Karina now has 100% donor blood in her bone marrow. The genetic testing came back yesterday afternoon and we are praising God for His miracle healing. Karina in no way will present as a male except genetically and we pray that this blood will be hers for the rest of her life.

Karina's counts are slowly and steadily rising. She still feels good and of course looks precious. I made a trip to the craft store for a variety of new things. We are definitely trying to pass time. I cleaned her room thoroughly today. The magic number for her blood counts is 500 and must remain there for a few days before we can go home. It is still hovering at 100. The important aspect of this phase of the transplant is that she remains free of infection, eating well and looking very healthy.

I was able to go home for the whole day yesterday thanks to Dwight's sweet mom and tonight the boys and I will have a movie and sleepover. The boys are doing well. We are all on our second wind of energy and excitement as Karina is healing and we are giving God the glory minute by minute.


Thank you for the sincere journal entries, they encourage us tremendiously. Keep the faith, we are!!

Blessings,

Dana

Wednesday, October 25, 2006 7:01 PM CDT

Dear Family and Friends,

I appologize for the few days with no update. Yesterday, Karina's blood counts remained the same but Dr. Kamani said that the lab counted more cells on the slide which was very good news. Today her counts came up by one point which is very small but in the right direction. These were little milestones and we were pleased.

Today at 1:30 pm Karina had a bone marrow biopsy and aspiration. Just a few minutes ago, the doctor came by and said the preliminary look shows good donor cells. There are not a lot of these young cells but they are present. This is a huge "Praise God" moment as we so need to hear that the baby blood is present. Umbilical cord blood does have a history of engraphing slowly and this may very well be the case with Karina's transplant. I gave Karina the animated version of the Tortise and the Hare story tonight before bed with actions included. This was the best comparison I could think of. Karina was a trooper all day as she was unable to eat until late this afternoon and she tolerated the procedure very well. She has some discomfort but no great pain. She has received no pain medicine.


Today we learned that her donor was a male. She will genetically be an XY instead of an XX which is funny to us. This only means that it took a tough boys blood to match the toughness Karina has for this to all work.


Please continue to pray as there are two very involved tests being performed on her blood and bone marrow that are still pending. One of these tests will tell a percentage of donor vs. receipient cells in her blood which we want 100% donor cells and closer look at the bone marrow biopsy for production and activity of the donor cells.

How much longer will we be in the hospital is a question no one can answer. This past Tuesday was the 5 week point and Karina and I have officially hit the "we are tired of being here, tired of coloring, tired of puzzles, tired of hospital food, tired of the noisy nights etc.......I won't carry on because we do know that God is teaching us all patience, reliance on Him, time to witness to others while we are hear, a mother daughter bond, endurance and strength to face each new day waiting on God's presence to shine through. We thank God for each new day to live, smile, laugh, breath ( filtered air :) ) and feel God's embrace of comfort around us.

Please pray for the test results that will not be ready until Monday.

Blessings,

Dana

Monday, October 23, 2006 2:25 PM CDT

Dear Family and Friends,

Praise God for the small progress that tells us that God is in control!! Karina had some new white blood cells today. Dr. Kamani raised two thumbs up but cautiously said that he can make no promises. We are very pleased and excited to see Karina's blood moving and moving in the right direction. We need to see continual progress in her blood counts for the next several days to be sure that this is the new baby blood hard at work.



Karina is doing very well. Her Omi is with her this afternoon and that is a real treat for both of them. Karina received a blood transfusion over the weekend and that perked her up. She looks good and saw the smiles this morning. We remain very cautious and will patiently wait for further blood tests. The blood results typically come each morning around 8 am and I roll off my air mattress, flatten my hair, wipe my sleep out of my eyes and stumble my way to the nurses station and ask if anyone knows the counts for the day. Please continue to pray for healing of Karina's body and that these few but alive cells continue to work hard and grow.


Dr. Kamani said he physically went to the lab this morning to see the blood sample under a microscope to verify the cells were real!!! They were.



We are praising God for the small progress and faithfully waiting.



Blessings,

Dana

Friday, October 20, 2006 7:39 PM CDT

Dear Family and Friends,

Another evening of doing laundry and updating Karina's website, only I forgot my tea. Karina remains without any blood counts today but we do not feel discouraged. Each Friday we have a family meeting with Karina's doctor to discuss any and all details of Karina's health, care and needs we may have. Her primary doctor and chief of the hemotology oncology department is Dr. Kamani who I have mentioned before. This doctor is a blessing to our family not only for his knowledge but compassion for Karina and healing kids with cancer. During our meeting today, he layed out the future if (and that is a big IF) the current transplant is not successful. He is a planner and wants to be prepared well in advance which we find valuable. Since Karina's body is at a point of great risk for infection, he has to know what exactly to do while she remains in this state. He did tell us that he spoke with a coleague who happens to be the doctor who did the first cord blood transplant in the US. She happens to be a female as well!! Dr. Kamani explained Karina's time frame to her and she said there is no need to be in a hurry that this is right on schedule. That was comforting to us.


So, we will continue to wait. Karina has a bone marrow aspiration and biopsy scheduled for next Wed at 1:30 pm is her counts do not rise before then. We are thankful that this is God's date for the procedure because this allows a few more days for the blood to grow and a new medicine they are giving her to encourage the white blood to grow to begin to work. Wednesday is God's day not just what happened to be available in the surgery area.


I had a surprise visit from an old friend today and that was a treat. Thanks Elizabeth for making the effort as this hospital is not an easy place to find.


I was reading the journal entries and loved Laura's about the bone marrow taking its time as to do a good job when it gets to working. This makes me smile as those words come from a mother of a successful transplant child. Thank you, Laura.

Thank you all for your loving, supportive words to reach out to our family. Dwight is delicately balancing school, home, Karina and the precious boys. I think his command job was easier than life right now. Please remember him in your prayers. We feel God is molding us and making us, using us and drawing us closer to Him.

Have a blessed weekend and keep praying for the baby blood!!! Each night I tell our nurse to please feel free to come in before their shift is up at 7 am, flip the lights, sing, dance, yell and announce that her blood is rising!! We would happily be wakened to that joyful news.

Blessings,

Dana

Thursday, October 19, 2006 11:03 AM CDT

Dear Family and Friends,

Karina still remains with no blood counts. We are still waiting and very hopeful that her "baby blood" is hard at work inside her bone marrow. The doctor said that we are still in the time frame for it to begin working but he would like to schedule a bone marrow biopsy and asperation for Mon or Wed of next week to see what is going on inside.

We are prayerful that her blood counts will begin to rise and that she does not need the procedure. If they show up before the scheduled procedure date, then they will cancel the procedure. The procedure could show one of three things. One- confirm no cancer is growing two- see if the baby blood is there and sufficient but just not working yet three- see if the transplant was not enough and that she would need another transplant.


I honestly found myself asking God to stop. That truly is not where my heart is or should be. We just so much want Karina to be cancer free, go home and rejoice in our answered prayers. We know God is not done with us and we are patient for His plan. Karina has not complained one time about being in the hospital, has not questioned God or the power of her prayers. Everyday she asks me to read her the Princess Bible (thanks, Lorraine). There is so much comfort in God's words to us in the Bible and we stand firm on those truths.

Thank you for your prayers and encouragement. Thank you Debbie for the visit yesterday to come and love on us.

Blessings,

Dana

Tuesday, October 17, 2006 4:56 PM CDT

Dear Family and Friends,

Well, no news is no news at this point. Karina is doing very well but does not have any blood counts just yet. She is now off the IV food feeding and morphine. Karina is on codine to prevent side effects from the morphine and is eating plenty. She has some discomfort in her throat and will have a break through dose of morphine in the next hour but otherwise she is doing very well. Today, she has been detached from her IV pole for 6 hours. What a great feeling for her to be walking around without all the cords and a heavy pole in tow. Today is day +21 since her transplant and we are anxiously and excitedly awaiting for her counts to start rising. Tomorrow morning will be the next blood check and I have asked our nurse to please feel free to come in, wake us up, turn on the lights, shout and sing if she has any counts to tell us about tomorrow. The feeling reminds me of waiting for our children to be born. We do feel like this is new life for Karina.

Thank you for your faithful prayers. I will write more as things unfold. The doctor says it could be this week or even next week for the counts to rise as cord blood usually takes longer to engraph. So, we are waiting patiently and prayerfully.

Blessings,

Dana

Sunday, October 15, 2006 12:39 AM CDT

Dear Family and Friends,

Hello after a wonderful weekend. Karina is doing well. She still has no "counts" which is what we are now anxiously awaiting. Her white blood cells are not yet producing and we pray that in the next few days that the new stem cells begin to work. Once the counts start to rise, it will take 5 days or so to reach the limits that will give her an immune system back. Please pray that the new "baby blood" (as Karina calls it) begins to engraph and her bone marrow will fall in love with it. We are on day +19 and they want to see something by day 28. Karina's blood pressure is very high and she remains on medicine for that. All side affects of the other drugs she is on.

Karina has been in very good spirits and up all day doing her routine. She is waiting for me to bring her "the goods" to make us tuna fish for lunch. Needless to say, she is eating wonderfully and is in no pain. The doctors are reducing the TPN which is the food they have been feeding her through her veins and the morphine each day. We are ready for those to be done and allow Karina to be more on her own.

She is ready to talk on the phone again and we will try to call her girlfriends in the next day or so. Karina had a good sleepover with her daddy on Friday night and I enjoyed the boys. My parents took them out to their house in the country, Harpers Ferry, for the day so that Dwight can tackle the large workload he has for school in peace and quiet. The boys are doing well but the length of time is beginning to wear on them. We have had a mommy and 2 baby deer in our backyard the past few evenings. The boys are loving watching them and feeding them deer corn. It is a great reminder of God's blessings on the home we are living in and the nature we all so love and miss when we think back to OK.

I don't have a spell checker on this program to check for my mistakes, so forgive the blunders.

Please pray faithfully as you have been for a good week of great news. We will say goodbye to the morphine, TPN, high blood pressure and welcome white blood counts. This morning I began to feel anxious about her counts still being at 0 and I thought to myself that God asks us to present all of these concerns to him, seek His will and believe that He has this all planned out. HE DOES and that is my responsibility and pleasure as a Christian to lean on Him. Keep the faith!!!

Blessings,

Dana

Wednesday, October 11, 2006 8:26 PM CDT

Dear Family and Friends,

Thank you for the prayers!! Karina is doing pretty well. She is eating much better yesterday and today and the nutritionist will reduce the amount of IV feeding she is receiving. She remains on morphine although I think her pain is about gone. Because she is interested in eating and IS eating we do not want to take away the morphine too early since there is anxiety after the severe pain she experienced last week. I am ready for both of these drugs to be gone and I do think she will start to feel more like herself. She is on very heavy steroids which leaves her very emotional and unable to cope. Last night we did not have a good nights sleep and that put today off to a bad start. Word is spreading around here that the girl and her mom in room 4167 don't like to be wakened at night. I have a nice (but firm) sign on the door and explain to each night nurse that Karina does not like to nap during the day and won't unless she is very very sick, so if they want her to cooperate then she has to get a good nights sleep. Momma bear rises to the occasion to defend her cub if need be.

We have been here since Sept 19th and hope to head home by Halloween. Karina is marking off the days on her calendar. My friend Cindy graciously came this morning to keep me company. Thanks to the Pralle's for the Little House on the Prairie DVD's, they have been a huge life saver.

Each of the gifts she receives is a blessing and know that she loves all of it. Karina would be very happy if no doctors, nurses, PT's, social workers etc........came into the room and her and I could do crafts and homework all day. She has definitely not been in the "mood" for anyone but mommy and daddy. The staff is very good here at Children's. They are very knowledgeable and available. The steroids have given Karina a very different personality and it must be terribly confusing and difficult for her to understand and control what is going on.

God is caring us through these days of waiting as we cast all our cares on Him. I don't know what I would do if I could not lay my burdens at His feet. Dwight and I remain very optimistic and confident that God has a perfect plan for Karina's life. Karina is a gift to us!! It is still early to know if the transplant is successful. We should starts to see changes in her blood in the next week or so. Please pray that we are patient, anxious about nothing and faithful to the "healers" plan.

Blessings,

Dana

Monday, October 9, 2006 9:33 PM CDT

Dear Family and Friends,

Karina has had two good days. She has been up and out of bed doing projects and crafts. My mom came for a few hours yesterday and Dwight's mom today for the day. The rest and break from the hospital was so good for me. It was great to see my sister and family and old friends, Kim and Kelly and the girls, yesterday. Thank you for the encouragement. Today I was able to get chores done at the house and spend time with Braydin and Torin.

Karina is so tired still as she remains on a double dose of steroids, nutritional suppliment, lots of antibiotics, morphine and a variety of other drugs. She is such a tough little girl. She stayed up all day today with her Omi and worked on homework etc.....and was so tired when I got back she just layed her head on the tray table. In her mind the bed is a place for sick kids and she is not about to lay in bed all day. Strong willed and a fighter is what our family Christmas letters have said about Karina since she was born. We are so proud of her.

This week we feel we are taking a deep breath and regrouping after a rough week last week. Please pray that she does not develop any more infections, fevers, sicknesses and that her blood slowly begins to work on its own. We may not see any signs of engraphment (which is when the new stem cells/cord blood begin to work on their own). There are signs to watch for that Karina's body is rejecting it, but we do not anticipate seeing any of those. Karina needs platelet transfused every few days which is normal.

Karina is such a sweet little girl. As sick as she was last week, yet she still used her manors when asking for something. Her sweet voice is coming back. She still has some soreness in her mouth and her lips are very dry (probably from radiation) which makes eating a challenge. She is starting to eat and we are thrilled. The healing process is slow and daily I would like to see big changes and that is just not the case.

Please pray for her mental well being as she is not able to leave her room and is trying to comprehend how much longer she will be staying in the hospital. It is a small room and I think it is wearing on her. Please pray that her body to loves her new blood!!!


Blessings,

Dana

Saturday, October 7, 2006 9:10 PM CDT

Dear Family and Friends,

"Change my heart, oh God, make it ever true. Change my heart oh God, may I be like you. You are the potter, I am the clay. Mold me and make me, this is what I pray." I love that song and we sang it a lot at First Baptist of Altus.

My heart is singing tonight as God has heard our prayers and answered them. Karina woke up at 8 am this morning, got out of bed and into the bath tub and never got back into bed until 7 pm tonight. There is no other way to explain her energy today than to say that God has His mighty healing hands on Karina. Dwight gets some credit too as Karina loves her daddy to have Friday night sleep- overs at the hospital. When she called me at home this morning, I knew that her voice was like God's angels singing. She sounded much stronger and without so much pain.

Karina and I did crafts, projects and listened to music all day and watched our evening movie together. She still has some pain in her throat and remains on morphine. I am hoping they start to wean her soon so she can feel more like herself. This afternoon, a scratch in her ear bothered her and her ability to cope is low, but to see her clean, dressed and sitting in a chair all day after the past several days was very encouraging.

Karina has been marking off days on a calendar and it dawned on me that she really has no concept of when she will be going home. She was given calendars through January which will cover her 100 days after bone marrow. We tossed all but Octobers since her bone marrow doctor would like her to be home by Halloween. It still looks like a lot of days to Karina ( and me for that matter) but this is something more realistic. She seemed pleased. We often day dream of the day she goes home, the drive through DC, the trees changing colors, the welcome home sign on the front door (that her brothers always make), the meal she would like to eat and sleeping in her bed again.

Several friends have called to chat with her and she is not up to that just yet as it hurts to talk too much. Please call in a few days. I printed 10 sheets of guest book entries to read to her. Thank you all so very much for your funny, serious, loving, caring, pationate and faithful messages.

Dwight and I were talking the other day about the ability of each of you make Karina a part of your daily prayer life. We know that you all have many things going on in your own lives including heartache and sorrow, yet you have been so faithful to pray for Karina and our family. We are grateful, please know how sincerely we mean that.

God does answer prayer!!! He has seen us through a tough week and will continue to be with us. I have been reading a book that caused me to realize something. Instead of asking God to change my circumstance, I need to ask God to change my heart to better reflect my faith. I will never grow in Christ if I am never challenged. Tonight I am thankful for trials that better allow me to seek God and feel His presence. That is a good feeling.

Blessings,
Dana

Friday, October 6, 2006 9:10 PM CDT

Dear Family and Friends,



I am home for the night and Dwight is having a sleep over with Karina. Sleep is the key word!! Karina still remains very very tired and sick. She continues to have a fever that seems to come at 12 midnight and then runs until noon the next day. Karina slept just about the whole day today. Dwight was very busy taking care of her, bathing her and keeping everything clean. Dwight has been working so hard at work and home and seems to muster up patience, energy and love for Karina. He is a great man!



This has been the case since Tuesday morning. We had a weekly meeting with the doctor today and the cultures are continuing to grow. There has been a "bug" identified that has allowed the doctor to change the antibiotics around to better kill the infection that is growing. This is good news as we hope that the fever goes away and she can regain some energy. The doctor assures us that this is normal for bone marrow transplant kids and she is still doing a bit above average.




Karina's mouth sores are slowly healing. The throat is still sore but we anticipate healing in the next several days. Time seems to be going so slow......rather; hospital days seem to go so slow when we are waiting for healing. God's timing is perfect and He is the divine healer. Dwight and I struggle to see Karina so sick and suffering. Please pray that we find the right words to tell her what is happening and that she learns to lean on Christ as we do. It has taken many years of maturity for us as Christian's to accept what is happening to Karina. I want her to know that Jesus loves her and is never going to leave her.




Thank you all for the very special messages that you have written in the guest book. We cherish those and they truly bring light to these dark days. This next week will be similar to this week, per the doctor. We feel that God has the power to heal her in His timing. Please pray for comfort for Karina and that she can begin to get out of bed again and regain strength.




We send our love to you all and thank you so much for your prayers. There are new photos posted.



Blessings,

Thursday, October 5, 2006 12:29 AM CDT

Dear Family and Friends,

Please pray for Karina. Her fever is still high and consistantly present since Tuesday morning. The blood cultures are growing gram negative infection and she is now on another antibiotic. This is not good because it is infection in her blood. The antibiotic should take care of it in a few days. Our prayer is that the fever is from this specific infection and the antibiotic works to rid her blood of the infection and fever. The mouth and throat sores are still present but not as bad. The pain doctor upped the morphine level yesterday.

Karina is miserable, sleeping and very quiet. It is very hard to see her down, not at all herself and suffering. We feel the days are dark right now but with Christ we rest in His love and comfort that all things are for a purpose. Please pray for Karina and her body. She seems so sick to us now. We knew these days of sickness would come but also pray that they go quickly.


I will write more later.

Blessings,
Dana

Tuesday, October 3, 2006 9:30 PM CDT

Dear Family and Friends,

Hello again as I sit in the parent room waiting for laundry, drinking tea from my Lorraine mug and eating Milano cookies writing to you all. I am always compelled to thank you all each entry for your prayers. Karina and our family feel a blanket of prayer over us as Karina continues to fight the battle. Please know that you all are displaying your faith in God, obeying his word and giving us strength to carry on.

By the way, in Karina's jungle painted room, these words are written across the wall, "lean on me, I'll give you strength to help you carry on." These are God's words and His promise to us.

Today Karina developed a high fever. This is predictable and expected as her blood levels are very low and her body is at risk. She is now on a lot of medication including steroids, antifungal, 4 antibiotics and TPN which is a nutritional suppliment that goes in her veins. She has not eaten much since Sat and this will provide her body a little extra "juice" to hopefully help Karina feel better and to heal.

I thought you might like to read something other than my words. I received an email from my friend Shelly in OK back on Sept 16, 2005. I enjoyed it and sent it on to my sister Debbie at that time. She sent it back to me July 17, 2006 along with a sweet message. Here it is.

THE PURPOSE OF PAIN

Matthew 16:24-27

"God, if you love me why must I endure pain?" This question preoccupies many believers in their darkest hours of need. While pain comes in different forms and has different durations, suffering always comes with an objective greater than our comfort, pleasure, or personal goals. If we seek God's purpose for grief, we will find both His peace and His deep love for us.

Pain instructs. Christ's sufficiency is more apparent during times of suffering than in the midst of blessing. Discovering God's faithful provision strengthens our resolve to endure.

Pain purifies. Counterfeit faith cannot withstand hardship's flames. Like gold in a refiner's fire, suffering believers experience the burning away of impurities until only things of value remain. Trials bring into focus the truth about the world we live in, the nature of the people we meet, and the incomparable worth of the Lord.

Pain motivates. Pain drives us to God. How often do we hear testimony from people who discovered Him during their worst trail? In His wisdom, our Father knows whether we require motivation from blessing or from distress.

Pain opens us to intimany with God. Running into His arms guarantees us the comfort and energy that is available only through an intimate relationship with the Father.

Living an easy life doesn't earn rewards. Though our instinct is to sidestep pain, suffering helps us find intimacy with God and the great purpose He sets for our life.

My sister writes:

Hi Dana,
You sent me this back in September of last year, and I just read it again. The truth in this seems even more relevant today than it did then. What would we do with out God's faithful love for us and the comfort His word provides us? I saw the pictures of Karina on the website today, and I couldn't help but cry. But then I saw a beautiful little girl with joy in her heart in spite of her circumstances. And as I read the guestbook entries, I fell part of a team of those who love her and are raining down prayers on heaven for her. What a testimony it will be when despite what the statistics are, Karina emerges well at the other end of this because God's people prayed and trusted Him.

As you get ready to move from all those dear people in Oklahoma, they will be passing the baton onto those of us here in Virginia to take over caring for you all through this. We are going to have lots of fun too. We'll be up visiting and to help as much as we can and is good for you all. I'll call you tomorrow.

love,
Debbie




What a special sister I have!! Thank you for praying.

Blessings,
Dana

Monday, October 2, 2006 11:49 AM CDT

Dear Family and Friends,

Hello. Karina has developed serious mouth sores in her throat and has great pain. These are sores that we knew would come from the radiation and high dose chemotherapy last weekend. The peak period for the sores to be present is day +7 to +10, we are at day +6. So, yesterday we started morphine as needed and today she is starting a constant drip of morphine and extra "shots" as needed from the nurse. This is part of the protocol for pain and a new drug for us. We anticipate that she will need the morphine until the weekend. The mouth sores should begin to heal as her blood begins to start to work on its own.

Karina remains quiet because it is hard to talk and is not eating because it hurts. In the next few days, the doctor will consider feeding her other ways. Not pleasant ways so lets all pray that Karina will try to eat even with some pain. The level of morphine is a small dose and should not make her sleepy. There is a constant balance of comfort, mood and alertness that allow Karina the desire to eat. So far the scale is out of balance, mostly because Karina is a tough cookie. I have always felt that eating is the only thing Karina can control when she is in the hospital. Since this is not a 4 or 6 day hospital stay like most that she can just not eat, eating is important. I am standing on my head to get the princess to eat.

This will be a tough week as we journey through the pain. After the healing begins, she will start to feel better and be off the medicine.

Dwight and the boys are doing well. I am a bit weary. Long days standing on my head begins to hurt. :) I am tired of having no window in our room to look out to see the outside world, tired of seeing Karina suffer and missing the boys. My mom and mother in law will each take a day this week so I can go home and regroup. Mom Sones came yesterday, but Karina was not willing to have her stay. When she doesn't feel good, only mommy will do. God is sustaining us. Thank you to Kittie for the Bible verses on the phone that I so needed to hear. God is in control, has a plan and we are going to faithfully follow Him. We rejoice in each day that He gives us, thank Him for the medicine that we have to get better, grateful for doctors and nurses who care so much. God gave nurses extra doses of patience for their patients!!

Our care her at Children's is good. We have met new nurses and have made a few friends. We love and miss our OU Children's nurses as they were a part of our family as was the town of Altus.

Thank you for your prayers and love. I am able to read Karina all of her mail and she loves it. Photos are her favorite and we have lots displayed in her room. That reminds her of life before the hospital and what she has to look forward to when we get home. We will be here 3-4 more weeks.

Blessings,

Dana

Saturday, September 30, 2006 8:13 PM CDT

Dear Family and Friends,

Just a small update on Karina. She is doing very well today. Last night her daddy came for a sleep over and Dwight has amazing ways of creating fun and laughs with Karina.

About mid afternoon today, Karina started to complain of pain in her throat and mouth. We are at the beginning of mouth sores as we expected. Tylenol was enough to ease the pain and she was able to eat the rest of the day. If the pain increases and the sores become worse, she will be given a morphine pump. That sounds so big guns to me, but I know part of the standard protocol. I am so thankful for a friend in OK, Laura Hood, whose son completed transplant June 05. I quickly called her for confirmation and reassurance that this is the norm and she told me it was as well. I really appreciate Laura's support and willingness to walk me along in unsure times.

Mom Sones will come for a visit tomorrow afternoon and my parents will take the reins at the house tomorrow night. The boys are so sweet and flexible as they seem to go with the flow. I pray this continues for a few more weeks until we get home. Tomorrow is day +5. Day 0 was transplant day. Karina is loving counting the days, crossing off days on her calendar and keeping track of her vital signs on a neat graph Dwight made her. I on the other hand am counting her calories, playing waitress and standing on my head to get her to eat........anything, just eat. Today, she did a beautiful job of snacking!!!

Thanks for checking in!! Praise God for another good day with Karina.

Blessings,
Dana

Thursday, September 28, 2006 8:26 PM CDT

Dear Family and Friends,

Praise God for a good day. Karina is doing very well, physically and mentally. She is not eating much and over the next several days that will become an issue. My sweet parents drove 2 hours today for my mom to spend time with Karina and my dad to run me around doing all the things I day dream about after spending many hours in a small hospital room. (Eat out and Target were my top priority). Only after seeing Braydin and Torin of course!! Thank you both mom's and dad's for your undying support of our family.



Karina loved her time with her Grammie, but seemed to miss mommy as well. That tells me that she does not feel 100%. Rightfully so!! She drank a full can of pink lemonade as soon as I got back this evening. We have created a tradition of watching a movie before bed with the lights out. This has become very special time to be still and bond.

Last night was a rough night, nurse induced. :) We got through it and Karina slept in this morning. One of these journals, I will give you all a mom's perspective on my lessons learned while staying in the hospital for long periods of time with a sick child.


Karina has a wonderful incentive program going on with the child life specialist. She is earning play money to shop with and every Thursday is shopping day. She worked very hard for her money and "bought" a puzzel today. She earns money by taking her medicine, brushing her teeth, eating, drinking, etc........It is very fun and a challenge for her. Sweet Karina offered to take one of her nurses out to dinner with her play money. Too sweet and what a giving spirit. They decided on Olive Garden!!

We are in a holding pattern as we wait for Karina's old bone marrow to begin making the new stem cells that she just received. This will take 2-4 weeks for just a small idea of the success of the transplant. She still does not have mouth sores. Praise God. When we pray, God listens and answers our prayers. I printed a bunch of pages from the guest book to read to Karina. Dwight and I draw so much strength from the messages. We smile to see heart felt words from dear friends. Thank you all for taking a minute to write to us. When I feel a bit down, I come and read. If I bring a cup of hot tea, I feel like I just chatted with all my dearest friends all at the same time. Know that I would like to send you each a large hug to say thank you.

Thank you to our neighbor and friends Erin and Paul for treating the boys to a pizza night and for helping out with ball practices.

Don't forget to check out the new photos. Karina looks as good in person as in the photos. The road is very long at this point and the next 2 weeks seem to carry a high risk to her vital organs. The doctor is watching her liver closely.

Thank you for praying so faithfully.

Blessings,

Dana

Tuesday, September 26, 2006 10:50 AM CDT

Dear Family and Friends,

"Praise God from whom all blessings flow. Praise Him all creatures here below. Praise Him above ye heavenly host. Praise Father, Son and Holy Ghost. Amen."

"New Life Day" is now a new word in our household. Done!! Finished!! Pau!! Complete!! Karina received her transplant this morning from 9 - 9:30 am. Karina had a wonderful night's sleep with no fever or major events. This was a much needed nights rest to be prepared for today. She was premedicated before the transplant then the transplant lab delivered the blood in a blue cooler. The bag was hung and 30 minutes later it was complete, leaving not even a drop of blood in the bag or tubing. We are assigned two nurses today who have done a super job caring for Karina. Karina's blood pressure was high after the transplant which is pretty normal and was given Lasix (sp?) to cause her to excrete more. The pressure is coming down nicely.

When we woke up this morning, Dwight was sitting in our room waiting for us to wake. What a nice sight to wake up to!! Karina was very excited to see her daddy. I am reminded daily how Dwight and I, and our very different personalities, are both needed in raising our kids. Where my personality is weak, his is strong. Karina has been in a very somber and quiet mood and not eating enough. Dwight had a nice discussion with her about the options to keep her fed. An NG Tube is the next step. So, she seemed to have snapped out of her non-eating mood and promply fixed herself a tuna sandwich, while watching the food network of course. Thank you Daddy!!

I love to write about stories and things that are truly God's timing. Last week, the chaplain came by and we spoke in the hallway about our faith, belief in prayer and healing. She asked if she could come by and pray over Karina and her cord blood. I was very excited about her offer. I had not spoken to her since then and today at 9:01, she walked in. The nurse had just undone the clamp to allow the blood to start flowing and it was working its way down the tubing when the chaplain walked in!! That is not coincidence, but God showing us his presence!! She said a beautiful prayer over Karina and her blood.

Dwight and I feel that we have been working so hard since June 23 (relapse) to prepare Karina for today. All the chemo, tests, procedures, avoidance of germs etc.......and we are here. Please pray for the stem cells to be happy in her body and for her bone marrow to recognize them as good and healthy cells. We want her body to show 100% donor cells in the next several months and 0% of her own.

The neat part of this story is that the cord blood came from New York. My dad was born and raised in NY and I would like to think that now she is even more Italian than before!

Thank you all for your prayers and please continue to pray as the next several weeks are critical. We pray for no graph vs. host disease (GVHD)and minimal discomfort for Karina. The mouth sores are still to come, great risk for infection and great fatigue etc....... We will not know the success of the transplant for 2-4 weeks. Keep praying.

Blessings and thank you so much for signing the guest book. We send our love to you all.

Dana

Sunday, September 24, 2006 1:17 PM CDT

Dear Family and Friends,

Thank you all for your many prayers. Karina has had a rough couple of days. Yesterday she received her high dose chemo in a 30 minute period, which is very fast. She got sick shortly after. She rested in the afternoon and then felt pretty good. We watched a movie and had popcorn then she became very sick. She had a lot of pain from being so sick and still feels the aches in her stomach this afternoon. The second drug yesterday and today is an animal product that is an antigen that is preparing her body to accept the cord blood on Tuesday. She developed a very high fever and was immediately put on 2 antibiotics to protect her blood from bacteria. Her white blood cells increased significantly so the doctor thinks there may be something going on. She is on 5 doses of antinausea a day, lots of premedications to prevent reactions, but praise God she received her last dose of chemo this morning................forever we pray. Karina should not need anymore chemo for life!!!

This morning Karina developed welts on her stomach and thighs and this may be a result of the animal product. SHe is not receiving more of this drug so we are praying that there are no more reactions. Her fever seems to be gone for now.

Please pray for Karina. She never asks why? I keep telling her that this is all to prepare her body for new blood. We have to get rid of all the old stuff so her body falls in love with her new blood. She has not cried. She is very quiet, very still, and has no expression. She looks absolutely beautiful. Her skin is smooth (the rash that we have been fighting for a month seems to be gone), her cheeks are rosy and her eyes look good. I would compare her to an angel!!! Dwight came today for the afternoon with her favorite food, ravioli!! She loves seeing her daddy and he brings humor and light that I can't always provide.

This morning she asked to make beaded bracelets for her friends. I was so touched that she wanted to send things to her friends and that she even had enough energy to think of others.

I pray with Karina often and remind her that many people are praying for her every minute of every day. We ask God to allow us to feel those prayers to get through these endless minutes of discomfort. Thank you all so very much for your love for our family.

My parents have done an amazing job with the boys this past week. Please pray for my parents and my in-laws as they switch rolls this week. They are all putting their personal lives on hold and running our household while we are with Karina. What a blessing to have parents who are so willing to help and able to help.

Blessings,

Dana

Thursday, September 21, 2006 5:30 PM CDT

Dear Family and Friends,

Thank you for your prayers these past few days. We arrived to Children's Tuesday afternoon to get settled into our new "home". It is a room in an isolated bone marrow transplant unit tucked at the end of a hall on the forth floor. We have a cute painted mural of a safari scene. The room is small and comfortable.

We have traveled by ambulance twice a day for yesterday and today. Tomorrow will be our last two treatments. We leave around 6:15 am and again at 1 pm. The ride is a pretty drive through DC and the fresh air and scenery is so uplifting.

The first radiation treatment was tough. The very sweet technitions worked for 2 hours to position Karina just right and then take X Rays until they had it perfect. Karina remained taped with her feet and knees together and her chin taped in an up and back position. She finally began to cry and had enough. After praying and a pep talk from a few staff folks, she continued on with the actual radiation. We arrived back to our room at Children's and she was sick the rest of the day and into last night. She was unable to keep water down. They started IV fluids and different antinausea meds and by mid morning today, she was pretty much back to normal.

Karina is wearing her badge of courage only our heavenly father could provide her with. She has been in some very scary places the past few days and I have had more trouble holding back tears then her.

It is very hard to see your precious child laying on a stretcher all taped up and receiving adult doses of radiation and deadly to her bone marrow. She lays extremely still as instructed. She receives between 20 and 30 minutes of radiation total. Once, after the first half of treatment, the tech went in to move her for the second half of treatment and she was wiggling her toes to the beat of the music. We bring fun kid music for her to listen to during treatment. That is the sweet spirit of Karina. Making fun where there is no fun, bringing joy to where there is no joy!! I pray that the staff and folks we meet will see God through her courage and strength.

Karina is in great spirits today and feeling good. She is a bit tired tonight. She is eating and drinking. The boys are doing well and having fun with my parents. Dwight's parents will be on "duty" next week. Braydin and Torin are having fun with baseball and busy with school. I am planning on going home tomorrow evening and Dwight will come and give me a break and Karina a new face and game partner.

Thank you for sending gifts to Karina. She loves all of it. Each item that enters her room must be wiped down with a special germ killing wipe. Her room is to remain free of bacteria and there are extreme measures taken to protect her. She is on a bacteria free diet, no fresh fruit or vegegables. I wear different shoes in her room, wash her clothing 2 times in hot water, we are to change clothes and bathe once a day, change her sheets once a day, I do not eat or shower in her room, all her food comes double wrapped and she is not to touch anything that has not been wiped with special wipes etc..........I could go on and on. After tomorrows radiation, she will have dead bone marrow, Sat and Sun she will have high dose chemo to kill any remaining cells in her blood, Monday her body will rest and Tuesday is the big day. "New Life" day!! She will receive her cord blood.

Please pray for Karina, the doctors and nurses who will care for Karina so closely. God knows our path and the future and we rest in Him.

Blessings,

Dana

Monday, September 18, 2006 9:35 PM CDT

Dear Family and Friends,


We are packed and ready for our trip to the hospital tomorrow. We are to check in at 3 pm to get orientated to the floor/room and get cozy for a restful night. We hope to have many cozy and restful nights in the future at Children's.


Today was a wonderful day. The morning started with Karina sleeping in which seems to never happen around here. We tried to make today a special day with lots of fun things. Dad Sones, otherwise known as "Bubba" was here for the morning and into the afternoon and was able to tell many wonderful stories to Karina. She loves to hear Bubba tell tall tales.


When Karina was in preschool, she met and kept a very good friend named Allyson. You have seen photos of her on the website and will see another today. The Lee family just moved to VA and lives just 15 minutes from us. Karina is so excited and so am I as Allyson's mom Amy has been a wonderful friend over the years. Amy is always optimistic and a calm friend when I am not and has faithfully been there through the thick and thin of our lives. Allyson does not care if Karina has hair or not, puffy checks or not and will dress up in about anything to have fun with Karina. God has once again blessed us with friends to support us and Karina.



Torin had a T-ball game tonight and did a super job. It is great fun to watch these little guys and gals get out there and play. They do the cutest things on the field. After the game, a lady stopped me and asked if she could ask me about Karina. She apologized for being bold, but was very kind and sincere in asking if Karina was on chemo medications. I said yes and told her about Karina and that we would be headed in for a bone marrow transplant tomorrow. She was deeply touched and concerned. She proceeded to tell me that her son, who is 5 years old and had just played T-ball against Torin's team, had a autoimmune disorder which was an overproduction of white blood cells that eventually destroys vital organs and was treated just like a child with cancer. This boy was a picture of perfect health and just 2 years ago was not expected to live after relapses and damage to his lungs, ear etc......


I felt like God was standing along side of Martha and me holding her hand to give her strength to ask me and holding my hand as I needed to meet this sincere mom who had good news to share. She said that she firmly believes that her son is alive completely because of prayer. I told her that we too believe in prayer and feel God answering prayer and believe God can heal Karina. What an evening for me and Mrs. Sones as she joined in with us. The sun was setting and the ball park was empty but I know that God was there tonight providing me a friend who has been through much of what we are about to endure. Praise God for being real!!!


Karina seems ready to go and tackle the future. She has not complained, asked many questions or fussed about anything. We pray that her rash will go away and stop itching. We had a great talk today that she will wear her badge of courage that God has provided her to endure what is to come. Thank you for your prayers, packages, cards and phone calls.


I will write as often as I can.


Blessings,

Dana

Thursday, September 14, 2006 8:38 PM CDT

Dear Family and Friends,

This has been a good week as God has calmed our hearts. We had a meeting with Dr. Kamani, the bone marrow transplant doctor, on Monday and signed consent forms and discussed any further questions we had. He is a Dr. we enjoy being around and fully trust with Karina's life. God has placed us with this doctor not by coincidence. I have felt very anxious about Karina's cancer staying in remission last week and this week and also illness free as we approach transplant. Karina has to stay totally healthy for the timing of all of this to work out. We will go in to Children's tomorrow morning for blood work and to sign more papers then no other apts until we are admitted Tuesday at 3 pm.



Yesterday, we took Karina to National Institute of Health for the radiation apt. She will be transported from Children's to NIH for radiation. The schedule will be radiation 2 times per day for 3 days. This will be next Wed, Thurs and Friday. What an amazing place NIH is. The facility and people were exceptional. We had a very good experience and Karina was fully cooperative with the CT scan (again) and simulation.



After the 3 days of radiation, Karina will receive very high doses of chemo for 2-3 days. Then she will have a day of rest with no medicine. The next day she will receive the cord blood. Dr. Kamani chose a cord blood with lots of cells that was a good match with Karina. He said the stem cells will run in as a blood transfusion would over a 15 minute period. He said the cord blood comes in a flat disc and is a small portion. It is small but packed with cells that we pray Karina's body recognizes as good cells. The concept is to fool Karina's bone marrow with new stem cells and for her own bone marrow to produce good cells.



Karina has had a good week. Today she was a bit tired but in good spirits. Tonight she felt very sad about her hair being gone. She is still bothered so much by this. I often wonder what sparks her feelings. This morning we were looking at an old photo album while the cable man was here. She kept asking as we flipped pages if she had cancer yet. She knows that we all love her for her precious heart. What she says and how she acts tell us about her heart. We love her smile and her blue eyes. I explained to her that the "fuzz" that she has will be gone next week with the chemo but that should be the last chemo she should ever have to have and her hair can start to grow back anytime it wants. Let's pray that the new hair is curly!!!



The past few weeks have been trying on our hearts and we have had to reach deep into our souls to remember what God says in the Bible about trusting Him. I have prayed in desperation for him to speak to my heart and he has. I feel a renewed strength that I need to make it through the next 6 weeks in the hospital. If Karina sees me afraid, she will be afraid. Karina is always with me and hears my every word. Thank you, God, for bringing peace that can not be found anywhere but in your word.



Please pray for Karina to remain in good health, for our family to have a relaxing weekend doing normal things together and for wisdom for the doctors as they prepare for Karina's treatment.



Thank you for encouraging our family with the guest book entries. We enjoy reading that so much. I read many of them to Karina today.



Blessings,

Dana

Saturday, September 9, 2006 8:56 PM CDT

Dear Family and Friends,

Praise God the week is over. After arriving home Tuesday evening after surgery, Karina got up early Wednesday and Thursday for very long days of testing. She did outstanding!!! She was so patient and cooperative through the entire week. We were both extremely tired by Friday. God is so good and our girl proved to be very healthy. The more I think about all this the more I realize how healthy and strong Karina's body is she just has very bad blood. These entire tests proved that..........if they would only listen to me :)!!!

This week was emotional for our family. Not only the testing and scheduling of apts coming up but confirmation that Karina's bone marrow is still in remission as well as her spinal fluid. Thank you for all your prayers.

School began on Tuesday and Braydin bravely got on the school bus alone. He had a good week at school and met a friend. Karina went to school for 3 hours on Friday morning, but will not be attending because it is too risky at this point. We do not want to mess up anything for the timing of her transplant.

We received many interesting and special things in the mail this week. First I want to give you an amazing number!!!!!!!! Altus Oklahoma ROCKS!!! Many of you remember the Blood Drive and Bone Marrow Registry that were held in Altus, one before we left and one after. The local drive collected 84 units of blood and the Air Force Base collected 75 units!!!! These numbers are simple amazing and we are so grateful for each person who donated!!! Karina has 160 units of blood in her name! Thank you Altus, OK!!

Karina also received a special blanket made by a dear friend of ours. The blanket/shawl is pink and came beautifully wrapped. Inside there was a note that said the shawl has 7,803 stitches in it and each one holds a prayer for your healing. Karina loves this soft shawl and found comfort in it this evening as I changed the dressing on her surgery sight and flushed the lines for her. Thank you so much Kathy Fulhart!!

I have to continue to brag about Altus, OK. If any of you are ever driving through that town, please stop and get to know someone in that town. You will be blessed!! Karina and the boys received gift certificates from our "Friends in Altus" and they were each thrilled. Thank you to our sweet friends, we miss you all terribly!

We got some very informative articles regarding cord blood transplants. Thank you to Jen and Mrs. Pralle for keeping your eyes open for great and encouraging articles.

Time is drawing near for Karina to begin. She will be admitted on Sept 19th to Children's National Medical Center. Dwight, Karina and I will attend a multidisciplinary meeting at Children’s this Monday afternoon. Wednesday morning we will go to National Institute of Health for the radiation workup. Karina will have full body radiation and heavy chemo for a week to kill her bone marrow before the transplant will take place. Please pray for Dwight and I strength to "hear the reality" of what is about to come for Karina. Please pray for Karina to not be scared and for the doctors to be knowledgeable.

Thank you to Uncle Sonny and Annette for coming down this weekend to cheer us all up!! Thanks for cooking the great seafood dinner and for us. We loved you being here. Thanks to Kevin for the fun surprise visit!!! Dwight and I enjoy your enthusiasm for life and hope to bump into you again in an exotic location again some day!!! Keep surfing!


We know that God is carrying Karina in the palm of his hands daily. She has been so strong and in such great spirits this week. We pray for continued good health for Karina.


Blessings,

Dana

Tuesday, September 5, 2006 9:05 PM CDT

Dear Family and Friends,

We are home and exhausted. The surgery went well and Karina woke around noon today. We got home at 5:30 this evening. Karina had a lot of nausea and discomfort but pressed on to get home for a good night's sleep. She is an amazing little girl and thrives being with her brothers and at home.

My parents took such good care of the boys and house. I come home to more pretty decorating and a spotless house. Spoiled is an appropriate word. Dwight and I are running on empty energy wise and emotional but God continues to sustain us.

I updated the photo album. Karina arrived home to many birthday cards and a few packages. Thank you to each special card and message. We feel such love and support from each of you and truly draw energy from you messages. We love you all.

Karina has two tough days of testing of all sorts. Please pray she has energy and tolerance. I don't know any other way to convince her to cooperate. Pray she just "does" tomorrow.

Love and blessings,

Dana

Monday, September 4, 2006 9:20 PM CDT

Dear Family and Friends,

Well, we made it home from our weekend away and are now back in the hospital, but for a good reason. Karina's doctor called while we were away and said he got her a spot for surgery Tuesday am for her port to come out and a new central line to go in. The central line will be a benefit for her as she will not need needle pokes while in bone marrow transplant and also offers two lines for administering meds/chemo and taking blood. It is scary because it is surgery but the hemotology doctor will be there to do a bone marrow asperation and spinal tap all while she is sedated. They will confirm that Karina's cancer is still in remission. Please pray for this as she must be in remission for the transplant to take place.

Karina's bone marrow doctor is on vacation until tomorrow and we will find out more about the transplant later this week. Karina is scheduled for most of Wed and all of Thursday to have pre-bone marrow testing of her entire body. She will have apt's with CT, audiology, cardiology, pulmonology, dentistry etc........ Our prayer is that because she will be done by the end of this week with all of the prep work for bone marrow, they make take her early as the marrow is available.

I have had a very uneasy feeling about the time between her last chemo and the date of bone marrow. God knows best and we will wait on HIM and the knowledge of Dr. Kamani. He is a very wise doctor and we fully trust him.

Tomorrow is the first day of school. We are all sad that Karina will not be there and Braydin will be getting on the school bus alone. I am sad to not be there for Braydin tomorrow but pray that God will protect him, grant him a sweet friend, and give him calm as he navigates a very large school and school bus for the first time. Braydin is a trooper and brave.

Torin does not begin school until next week. My mom and dad came to the house for the week. They are amazingly willing and able to help us. We truly don't know what we would do without them.

We had a wonderful weekend away feeling like a normal family. We went to my sisters for 2 days and just in time for the tropical storm to hit Williamsburg. Debbie and I happened to be out shopping when the worst of the wind and rain came. Our parents called and said the power had gone out and they had all 6 of our kids. We braved the weather and no power for the time of our stay but managed to have 14 people sleeping in the house with no power. Thank goodness for a sister and brother in law who have gracious hearts and a spacious house. Debbie and Chris made Karina's birthday so special. My grandparents were there and we had such a fun evening opening gifts in the dark as a family.

We then headed to VA beach to meet Dwight's parents. Unfortunately, our time there was cut short because of the weather and Karina's early surgery date. We ate at Bubba's Seafood Restaurant and enjoyed the Sones and Bruce (Dwight's brother) and Laurie. We spent yesterday morning at the beach collecting shells. The beach is about the most perfect place to pray, so I did a lot of that.

The weekend was filled with celebration and we so needed to feel and do normal things for a few days. Karina had beaten the rash a few weeks ago and no it is back. She will be seen by someone tomorrow before we head home. It is all over her and itchy now.


Please pray for Karina's body this week to be strong and that she can be patient and calm for all of the tests she must endure as well as the surgery tomorrow.

My heart grows weary with concern, worry, saddness, grief for our little girl that is changing daily. But, I do know that my strength comes from a heavenly father that is all knowing and all powerful. HE is providing strength. I think of a few lines from the song Great is thy Faithfulness. "Great is thy faithfulness, morning by morning new mercies I see. All I have needed thy hands hath provided, great is thy faithfulness Lord unto thee. Pardon for sin and a peace that endureth. Strength for today and bright hope for tomorrow."

Thank you for praying for Karina and our family. Days have been tough lately and we know God has Karina resting in His hands.

Thank you for the cards and gifts. Karina really feels cared for and loved.

Blessings,
Dana

Tuesday, August 29, 2006 10:03 AM CDT

Dear Friends and family,

We have been very happy to be home and doing normal things around here. Karina had her blood checked a few days ago and it was great. We will have it checked Wed (tomorrow) to be sure we are in good shape to be away for a few days. We will go down to the Williamsburg area to see my sister and to the beach for the Sones family reunion. We are so excited to see the cousins and rest of the family. It will be a short trip but warmly welcomed for our souls to smell salt water and feel sand between our toes. We pray that Karina remains well while we are gone.



We got a great call this morning from the bone marrow coordinator at Children's hospital. She said that Dr. Kamani requested for 2 donors (off the registry) to be further tested and had 3 cord bloods sent to their facility to be tested in a high resolution process. We are encouraged and excited to a large variety of options which will allow the doctor to find a perfect match. God has the match and we pray that Dr. Kamani will use his expertise too!



Karina is in great spirits. We will go tot the elementary school tomorrow for a tour. Karina will be on the homebound studies program and will have a teacher come to the house a few hours a week. the rest will be up to me to teach her. She is a great student and will do well. Braydin is anxious to see his school. Torin will also see his new preschool. I am nervous for all of it!! Please pray for the perfect teacher for each of the kids and that I will not be nervous to "let them go".



Dwight is doing well in school and enjoying the athletic side of the school.


Thank you for your prayers and love for Karina and our family.

Blessings,

Dana

Thursday, August 24, 2006 7:24 AM CDT

Dear Family and Friends,


Philippians 4:4-7 was my strength and reminder this weekend as we were in the hospital. It says, “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

We arrived home at 10:30 pm Monday evening after a long day of waiting for the methotrexate level in Karina's blood to go down. It went down just as it should have and we were very excited to come home. Karina had a pretty uneventful stay other than getting a very bad "methotrexate rash". She is covered in bumpy rash on her head, face and down her neck. It is not excessively itchy but is annoying. It will eventually go away on its own. We are praying for no scars.

Our hospital stay this weekend was a fun one in many ways. Dwight and the boys came for a visit on Saturday which is always a huge ray of sunshine for us. Sunday morning Karina's favorite "slap jack" partner Wendy Zippwald came for the morning. Thank you so much Wendy for your faithfulness and genuine love for Karina. She loves your company and especially when she wins!!

Sunday afternoon we were honored to meet our long distance friend Deanna Genesi. Deanna and my cousins Roger and Sharyn have been praying for Karina along with Zion Baptist Church in Ansonville, PA where my cousins go to church. Deanna has taken a sincere interest in Karina and we feel blessed to have this beautiful, mature young lady on our prayer team. Thank you Roger and Sharyn for making the trip. We had a wonderful day of laughs, gifts and "fuse beading".

Daily we feel why God placed us in VA at this time in Karina's life. My parents and Dwight's parents are helping us on a daily basis. Anything from having the car inspected, getting groceries, watching the kids or calling for repairs folks they are there at our beck and call. We are sure not used to having or needing help, but are grateful. The boys had a weekend sleepover at the Sones with daily trips to the pool and creek. We love our families dearly.

The paperwork and testing for Karina is underway for the bone marrow transplant. We do not know the date just yet but will be towards the second week in September. Emotionally, Dwight and I are praying for strength, wisdom, patience and endurance. For Karina we are praying that her body and mind remain strong. God has give Karina a deep sense of strength and acceptance about her condition. Never does she complain or refuse to go to the hospital or doctor even though she knows fully what is coming. Thank you to God for giving Karina "guts" beyond measure.

We are trying desperately to live like a normal family for a few days. Braydin and Torin begin baseball practice this week. School starts Sept 5th. Karina will turn 6 on Sept 3. We have lots to celebrate!

Thank you so much for your faithfulness to pray for Karina. She loves the cards and mail that she receives.

Blessings,
Dana

Monday, August 21, 2006 1:46 PM CDT

Family and Friends,

We are waiting to be discharged from the hospital and Karina wanted to write a few messages. Enjoy and watch for more updates tonight.




Thank you Deanna for praying for me. Thank you Deanna for the visit. Deanna, thank you for the beautiful quilt. Your skin is so pretty. Deanna, I hope that you will eat lunch with me soon. I miss you, Deanna.

Remy, Allyson and Lucas, Miss you, Lucas. Miss you Allyson. I miss you Remy. I love you Remy. I love you Allyson. I love you Lucas. I hope I see you soon. Thank you for praying for me.

Claire and Morgan, I am sorry about Pierre. My heart is sad for you. I hope you come to visit me in VA some day. I miss Morgan and Claire and swimming in your pool.

Grammy, Grampa, I miss you. Grammy and Grampa
I Love you Grammy and grampa.

Thursday, August 17, 2006 8:55 PM CDT

Dear Family and Friends,

Just a quick update on our meeting with the bone marrow doctor yesterday. Dwight and I were extremely pleased with Dr. Kamani at Children's National Medical Center. The location of the hospital is not ideal but for a good doctor we are thrilled. Karina seemed comfortable with the new facility and was definitely more interested in getting a Subway for dinner after the meeting.

God was so faithful to answer our prayer for a doctor that we fell comfortable with. This was the first advice our doctor in OK gave us before we left OU Children's. God is bigger than the medicine and doctors but we do know that He gave these brilliant people the knowledge to cure Karina. We felt nervous meeting the man who will cure Karina along with the divine healer. We left feeling very confident about what lies ahead.

So many of you have asked if there has been a bone marrow match for Karina. Dr. Kamani completed the nation bone marrow donor search of more than 10 million people and there was not a 10 point match for Karina. But, we do know that there are 3 cord blood matches that would be just as successful for Karina. God is good as he closed a door but opened a window. As the timing turns out, the best option for Karina would be cord blood anyway because of time.

We would like to see Karina head to bone marrow transplant after this block of chemo which ends on Sept 1. She would potentially be admitted the first or second week of Sept. This would allow her to "miss" another 36 days of tough chemo that is just buying her time but not necessarily benefiting her body in anyway. My earnest prayer is that this timing works out. Please pray for the many aspects that must all fall into place. Only God knows the perfect timing and we do want what is in his plan.

We head to the hospital early in the morning for 3-4 days. Karina will have a spinal tap in the morning to inject chemotherapy then will have a 24 hour high dose of chemo. She will then be pumped with fluids to excrete the chemo and when her levels are low enough, she will be discharged. We anticipate late Sunday but very likely Monday.

Thank you for your prayers. I am tired and weary but keeping the faith!!!

Blessings to you all and sending much love.

Dana

PS our email and voicemail are now up and running. Yea!!

Tuesday, August 15, 2006 9:32 PM CDT

Dear Family and Friends,

We arrived home on Saturday afternoon. Karina has had a wonderful weekend. We went to the hospital on Monday for blood work and waited a few hours for the results. It was worth the wait because her counts were good. She did not need a blood transfusion as we were expecting. When we arrived home, my sister Debbie and her 3 children were here. Karina and the boys have had so much fun playing with their cousins. She has stayed for a few days and we are enjoying being together. Today we all went and played put golf.

Karina has had great energy and is in good spirits. She has been riding her bike, playing dolls and having a great time being home. She is getting used to her bald head. She talks every day about what she will look like when her hair comes back. She is hoping for curly hair!!!!

Tomorrow is a big day for us. We are going to Children's National Medical Center to meet Dr. Kamani who will be her bone marrow specialists. We are excited and very nervous. Please pray that we "click" with this doctor, that we trust him and that our faith remains in our heavenly father and not fully in medicine. We are praying for the timing of the transplant to be perfect and in God's timing. Please pray for our hearts to be open to information, wise in our questioning and patient for the answers.

I was able to register the kids for school and attempt to complete all the necessary paperwork. I seem to be burning the candle at both ends these days making the most of each day. Thank you all for your prayers and love for our family. Karina has enjoyed a CD of music on healing. Thanks, Hank. Karina believes that God will take away all her sickness and heal her. Oh, the faith of a child is pure and simple!!

I will try to update tomorrow night after our apt. We have not figured out our answering machine or email account yet. So, sorry for those of you who are trying to contact us? We will work on it soon.


Blessings,
Dana

Wednesday, August 9, 2006 10:02 PM CDT

Dear Family and friends,

We are still in the hospital and not going home in the near future. Karina's low grade fever seems to still be evident once a day or so and her white blood cells are still at 0. We are prayerful that God will miracously heal her blood and bring those counts up. Her magic number needs to be 500 before we can go home. Please pray for her. I look at her and see a very healthy girl with very sick blood. Her body is so strong and she looks good if we could only get her blood healthy.

Today we had lots of company and just in time before Karina and I needed a transfer "down the hall". We have been in VA 14 days and in the hospital 9 of those. My parents and my in-laws all came for a visit today and brought the boys. The Sones stayed here with the boys until 7 pm tonight. I have to brag on my sweet boys for finding fun in the hospital for an entire day just to be with their sister. The three of them sure do click as siblings do and it is a joy to see. Thanks to mom S. for keeping them busy and for dad S. for taking me to Target. Today was a great day. Dwight has been able to come for lunch the past two days and we so enjoy the quietness of a meal together. He is loving school and getting in the groove.

Thank you so much for writing on the guest book. I am so encouraged and love to read each word. (Kathy F. we are on ward 51, pediatrics.) Our number here is 202-782-8420. We are praying to be out of here by the weekend. I miss the boys and getting to spend a relaxing summer with them. They seem to be doing well and adjusting as their grandparents are loving on them.

Please remember to pray for our soldiers who are fighting the war. The evidence of our country being at war is seen all over this hospital. Each time I leave the floor, I see at least one soldier who has lost a limb and usually more than one limb. Today there was a dad getting his children (probably 5 and 7 years old) breakfast from his wheelchair, missing one leg. I felt too emotional to thank him for serving and sacrificing for our freedom. I hope to see him another time.

Our care is good here and we have a beautiful view out our window. Last night Karina looked out the window and the moon was nearly full and has some thin clouds drifting across the center. She was amazed and I told her that must be a special gift from God tonight as He created this earth and a reminder to us of his awesome power. We stand on our faith that God is the divine healer!!

Blessings,
Dana

Monday, August 7, 2006 10:20 AM CDT

Dear Family and Friends,

Praise God we got to go home for 4 days. Karina had two good days at home and then started to feel tired and lethargic. Last night she developed a fever and we came into the hospital. Thank you to my sweet dad for taking us into the city at a late hour and for my mom for holding down the fort with Dwight. My grandparents came for the weekend and loved seeing Karina.

Dwight and I were able to unpack the rest of the house this past weekend and my parents are doing the decorators touch on the details. Dwight and I bought a 2005 Honda Odyssey Van yesterday and we are thrilled with our purchase.

The boys are doing well. They are enjoying just being home and have had fun "breaking in the new house". Dwight's parents continue to help us and we truly don't know what we would have done without our parents this past 2 weeks.

Karina is in the hospital with very low blood counts. She received a blood transfusion last night. The fever seems to be gone which is great news. We will be in for 4 days or so waiting for her white blood cells to rise. We were up all night last night with interruptions. Karina got very sick so now she is sleeping trying to catch up on what we missed last night. I am please to see her resting.

Life has been spinning for our family as the transition with a sick child has made things very challenging. I have to apologize for something I forgot. LAST FRIDAY, ALTUS AFB ALONG WITH OKLAHOMA BLOOD INSTITUE HAD ANOTHER BLOOD DRIVE IN HONOR OF KARINA. THANK YOU TO THE MANY FRIENDS WHO WENT LAST FRIDAY TO DONATE BLOOD AND REGISTER FOR BONE MARROW. ALTUS AFB IS A BASE DWIGHT AND I ARE PROUD TO SAY WE WERE A PART OF. PEOPLE AT THAT BASE CARE ABOUT PEOPLE, EVEN PEOPLE THEY DON'T KNOW. WE HAVE SUCH FOND MEMORIES OF OUR TIME THERE AND THE PEOPLE WE MET CHANGED OUR HEARTS. THIS BASE IS LIKE THE TRADITIONAL AIR FORCE WE KNEW WHEN WE GOT MARRIED IN 1991. THANK YOU TO THE MANY PEOPLE WHO "TOOK THE NEEDLE" FOR OUR GIRL.

PLEASE PRAY THAT KARINA STARTS TO FEEL BETTER. IT IS THE HARDEST PART TO SEE YOUR CHILD SUFFER. WE DO KNOW AND BELIEVE THAT GOD HAS HER COMFORTED IN THE PALM OF HIS HAND. WE WANT TO SEE OUR FIESTY KARINA COME BACK IN FULL SWING SOON. PLEASE PRAY THAT HER BLOOD LEVELS COME UP AND STABILIZE. GOD CAN DO THAT AND MUCH MORE.

HERE IS A QUICK GOD IS REAL STORY. LAST WEEK KARINA'S NURSE ASKED IF WE WANTED TO MEET SOME OTHER CANCER PATIENTS AND WE SAID YES. SHE INTRODUCED US TO AN 11 YEAR OLD BOY NAMED MATT. HIS MOM WAS THERE AND WE ENJOYED CHATTING. IN THE COURSE OF OUR CONVERSTAION, SHE MENTIONED THAT HER HUSBAND WAS GOING TO BEGIN SCHOOL AT ICAF WHICH IS THE SAME SCHOOL WHERE DWIGHT IS ATTNEDING. WE LATER MET MATT'S DAD. DWIGHT CALLED THIS MORNING AND SAID, GUESS WHO IS IN MY SEMINAR WHICH CONSISTS OF 13 PEOPLE IN A CLASSROOM? MATT'S DAD. I DO THINK THAT GOD HAD THIS ALL PLANNED AND WE PRAY THAT DWIGHT WILL BE A PILLAR OF COURAGE, SUPPORT AND WITNESS TO ALL HE MEETS IN SCHOOL.


THE COMPUTERS HERE AT THE HOSPITAL ARE NOW FIXED AND I WILL UPDATE AGAIN BEFORE WE GO HOME.

BLESSINGS TO YOU ALL.
DANA

Tuesday, August 1, 2006 11:07 AM CDT

Dear Family and Friends,

I have to appologize for the absence of an update for you all. I wrote a complete update last Thursday and did not realize till Monday that I never hit "enter" for it to be posted on Karina's site. Thanks Cheryl. I will try to fill you in on the past week.

We flew out of Altus, OK last Tuesday on a medical flight. Karina, the boys and I flew directly into an airport a few miles from our house. The flight was super with 2 excellent nurses on board. We landed to a welcome party of family and friends. Thank you to my parents, my sister and kids who drove from Williamsburg, Dwight's mom and my dear friend Wendy Z. and her sweet boys. It was a warm welcome and so appreciated.

Thursday we had our first apt at Walter Reed in the Hemotology Oncology office. We recognized our doctor and nurse from our visit in March. We have been blessed with wonderful caring and knowledgeable doctors and staff. We feel comfortable with the change. How could we not since God had this move scheduled for HIS plan and these doctors hand picked to care for Karina. The adjustment has been very smooth.

Friday we came in for our 5 day inpatient. This is now the first treatment on block B. Block B will last 36 days and then we head for Block C which is also 36 days and then off the National Children's Medical Center here in Wash DC for bone marrow transplant preparation and transplant. Karina had a spinal tap Friday morning and we began new chemo that afternoon. Today is day 5 and we will go home tomorrow evening (Wed). The staff has been very good here. The nursing staff is comprised of 50% active duty and 50% civilian. They are very pleasant and punctual with medications.

Our household goods arrived this past Sat and Dwight along with my parents and inlaws are vigorously unpacking. Dwight sold his beloved white (OJ) Bronco in Altus and will car shop in the next few days before school begins on Friday. Our house is huge and lovely. We feel so blessed to have the opportunity to rent from Dwight's brother and his wife Laurie. We are loving having old friends around the area. The boys are playing right now at my friend Glynda's house (3 miles away). Glynda lived behind me in Altus and moved the week before us. God is good all the time. When we feel alone or forgotten, He is there with a reminder blessing to say He hears our prayers and answers them!!

Karina has had a rough 5 days. This chemo is strong stuff and she has had a lot of nausea and vomitting. We are mixing and matching drugs to find something to beat the nausea and not put her to sleep all day. Karina does not like to nap or be sleepy during the day for fear she may miss something. She has been very quiet and not really herself. I am praying that when we get home to more familiar things and see some friends, she will be back to herself.

Thank you for your prayers and help over the past few weeks. We love our friends and family and draw strength from each of you.

"Pinky the Angel" hit our home again with a truckload of goodies for Karina and the boys. This mystery friend has been so fun for Karina. Thank you so much for making her feel extra special during tough times.

Sorry for the typo's, I am on the nurses computer and need to run for now.

Blessings and our love to each of you.

Dana

The Sones Family
8506 Indian Paintbrush Way
Lorton, VA 22079
703-646-5107
ddsones@cox.net

Friday, July 21, 2006 9:32 PM CDT

Dear Family and Friends,

"His strength is perfect when our strength is gone. He'll carry us when we can't carry on. Raised in His power the weak become strong." Thank you Jeanna for the beautiful reminder of God's strength and desire to carry us through tough times. I am learning to lean on Him, hard!!

CAN YOU SAY, REMISSION!!! Karina's bone marrow and spinal tap showed no cancer cells. The chemo has killed every cancer cell in her bone marrow. We give God the glory in this miracle. Today was a long and tough day with the procedures, saying goodbye and collecting medical records before we move next week.

I want to write about the staff that we have grown to love over the last year and 5 months. The nursing staff is a precious group of women who love children and choose to make a very horrible situation for families better. Today, I asked Diane (the first nurse we met in the clinic) what makes her come to work every day? Is her passion medicine or children. She never paused to think but immediately said the children are her first love and that she could not see herself doing anything else in this world. She makes a difference in families lives, just like ours, by offering encouragement, compassion, honesty and sanity. Thank you to the beautiful staff at the Jimmy Everest Center at OU Children's Hospital.........Diane, Tracy, Mickey, Robin, Shirley x2, Barbara and Deanna. We love you all and will miss you.

I can't forget the inpatient staff as well. this is a fun, loving and humorous group of nurses who truly care about each child deeply. Desiree, Nurse Jennie Cocktail, Tosha, Andrea, Suzanne, Tracy, Trudy and Stephanie. Ladies, you are an awesome team!! Thank you for loving Karina.

The moving truck left Altus today and is headed to the east coast. Our delivery should be next Wednesday. Karina and I will fly out on a military medical flight next Tuesday. Dwight will begin his drive to VA after we leave Altus. We would like for the boys to travel with Karina and I if there is room and if not, they will drive with Dwight. The boys have been troopers the past month and have learned to be flexible. Today Dwight's car would not start and they walked everywhere with their daddy without complaining and even helped paint the walls in our old house.

Please pray for Karina to feel better. Tomorrow is her last day of steroids and praise God for that. She is very quiet and withdrawn. She does not complain of pain but she must be very uncomfortable at times. She has not gained as much weight as last year after steroids which is good for her energy level. I think she would be very happy to never hear these words again; cancer, sick, pills, bald, procedures, remission, germ X etc.......She really wants to be just like every other 5 year old, normal. We are going to strive to do some fun things in the next few days with her. We are going to the movies tomorrow afternoon.

This past week the Altus Bulldog Cheerleaders made a visit to our house. Kim and Jordan Abernathy and Kimberlee Walker, thank you so much for an afternoon we will never forget. They came with stuffed bulldogs for everyone and of course Karina's was a pink "lady bulldog", T-shirts, a bag and best of all, a Karina size cheerleader uniform. Precious!! Thank you Jordan for passing down a treasured gift. Karina put it on with pom poms and all and cheered with these talented girls. They cheered and did tumbling passes in our front yard and Karina's friend Becca got to join us. Karina actually asked to wear the uniform up to her apt today. Thank you for your kindness in "Altus style". This town and the community keeps giving and giving to our family. We love the people of Altus.

Karina's future. The future is much brighter with remission in place. Karina will be off all medicine starting Sunday which will allow her blood to rise on its own. When it reaches certain levels, she will be admitted for her next round of chemo. We just finished block A of block A,B and C. Block B begins with a 5 day inpatient stay. That will happen very shortly after we arrive in VA. Block B is 36 days.

WE are excited for our move to VA. We miss our families and are excited to see everyone and dear friends as well. Our lives are overflowing with people who we feel God has placed in our lives to encourage us, love Karina and pray for healing. Thank you to those who have reached out to hold us close during this time. We see God's handy work daily. He never misses a chance to let us know he hears our prayers. We hope that your faith grows along with ours as our journey continues.


Blessings,
Dana

Saturday, July 15, 2006 9:25 PM CDT

Dear Family and Friends,



I know that God did not make any mistakes but I wonder sometimes why there aren’t a few more hours in a day and why moms don't grow one extra arm when they have children.

Tonight is our last night in our house. We will move to a hotel room tomorrow night and remain there until the flight out of Altus sometime the week of the 24th. Hard to believe we have been here 3 years almost to the day and have had many happy times in our home.

Thursday's apt in the city went well. We arrived and the nurses were not expecting us (a miss communication from the inpatient to the outpatient side of the house) but they were happy we were there and hustled to get things started. While we waited we were able to meet a very special new friend. A precious mom of a child who had leukemia emailed me and asked if she could come and meet us. We had the pleasure of meeting Laura and Emory Hood. Emory is an amazing 10 year old who had a bone marrow transplant in Houston, TX last June and is in remission and doing awesome. What a blessing to meet Emory. He is mature beyond his 10 years and was very eager to talk to Karina about his experiences. I was able to talk with Laura for a long time and she filled me with info and sparked my thought process to a few months from now when Karina faces bone marrow transplant. I learned so much and was grateful for my time with them. Thank you so much to the Hood's for taking time to come and visit with us. Our friendship will last for years to come!


Karina had a dose of vincristine in her port and chemo shots in both legs. This is her fourth dose of these painful shots in 3 weeks and we are so glad they are done for now. The nurses and I are amazed at the bravery Karina displays when getting these shots. She cries and then calms down, counts to three very slowly and then says "go" and then yells "awe". I would never have given anyone permission to put two painful shots in my legs. Those nurses would have gotten gray hair waiting on me. Karina is so tender but tough when she needs to be. Thank you, God, for giving her nerves of steel and strength to be brave.

We arrived home late but pleased with our day. Karina's blood counts were pretty good and rising on their own. We felt encouraged and Karina seems to be feeling good this week. This morning she rode her bike and tonight played in the water a bit. She is eating every hour and doing homework in-between.

Next Friday the 21st is our big day!! Karina will have a bone marrow biopsy and spinal tap to check for complete remission! She had just 3% cancer cells in her marrow last test and we pray for 0!! We have complete faith that God will deliver her body to this point and allow her to enter the next phase of chemo. Once at 0% she will be taken off all medication for a short period to allow her blood to recuperate/recover on its own. This may take a week or two. This is when we will be traveling to VA in preparation for her next round of chemo. It is a 5 day inpatient stay for a drug we have never had before.

Many of you have asked if Karina has a bone marrow match yet. Her blood typing will be complete early this week and will be sent to National Children's Hospital and the search will begin. It takes 6-8 weeks to find a match, the perfect match. We are praying for that.

Well, the verdict is in for the wig name!!! Karina chose Belle appropriately so after our trip to Disney World last month. I leaned toward Hairyette :). Karina is coping with her hair loss a bit better now. She has received two wigs but I think it is too hot to wear them right now. My sweet hairdresser, Cindy, actually purchased a new wig for Karina and surprised us (see photo). Thank you so much for your time and effort to make Karina feel like herself again.

Please keep praying. Thank you so much for your love and support. We feel it from every direction of our lives. Our church, First Baptist Church, has been prayer warriors for Karina and has sent us dozens of personal messages from those that pray for her daily. She loves to see those green printed envelopes in the mailbox. Thank you, thank you, and thank you.

Blessings,
Dana

Wednesday, July 12, 2006 4:47 AM CDT

Dear Family and Friends,


Jeremiah 29:11-13
""I say this because I know what I am planning for you, says the Lord. I have good plans for you, not plans to hurt you. I will give you hope and a good future. Then you will call my name. You will come to me and pray to me, and I will listen to you. You will search for me. And when you search for me with all your heart, you will find me!"

(Thank you, Suzanne for sharing those verses with me. Suzanne is the coordinator for the blood drives and the representative for the Oklahoma Blood Institute.)

We are STILL home and this is great news. Karina has remained fever free and we are so thrilled. She is doing okay. Her mouth sores still bother her so she is rather quiet. Her daddy seems to be the only one to make her laugh these days. I am not sure I want to know what he is telling her to make her laugh so hard:) but whatever it is it works. The weather is very hot here so she has been inside doing school work, eating, watching a movie or eating. Her appetite is not as huge as before, thank goodness.

Yesterday was a trying day. Karina has lost all of her hair and she is so sad about it. She sat in the tub as we brushed the last of it out and we just cried. I did not think she would be so upset and therefore I was surprised. She said, I used to be cute with my hair and now I am not. Braydin and Torin are just fine but I think it will be a while before she is ready for picture taking again. Yesterday morning I dropped the wig off at the salon where I go and my friend Cindy offered to cut it and try to dye it to look like Karina. Karina asked if it would be ready today so she could wear it. We are trying to think of a good name for her wig. Any suggestions? I told her now when I ask her to get dressed in the morning she not only needs to put on her clothes but her wig too. She smiled and thought that was great. Please pray for her to be accepting of her new look. Dwight and I told her over and over that she is still so beautiful, we see beauty within her heart, that people see her inner beauty in her sparkly eyes and all of the things that we should but it has not helped her just yet.

I can't wait to read the journal entries to Karina in the morning. She will be encouraged and I want to thank each of you for your thoughtfulness in your words.

Dwight and I are compiling questions for the doctor for our Thursday apt. Karina will have shots in her legs, which is scary, very painful and makes her cry.

Please pray for Karina's bone marrow to be in remission by next Friday. We have to get rid of 3% cancer cells. Please pray for the future bone marrow donor match that this person is healthy, available and willing to donate. Please pray for our upcoming move. The packers come this Monday. Please pray for Braydin and Torin as they seem to be doing fine on the outside. They are incredible brothers and "three" peas in a pod. The bond they share is really amazing. Please pray for Dwight and I peace, patience, faith and a calm only God can provide. Tomorrow is clean out the garage and attic day............we need extra prayer as we attempt this before it gets 104 degrees outside.

Thank you all for your unwavering prayer and support. It is more than we know how to accept. We are grateful for each of you.

Blessings,
Dana

Monday, July 10, 2006 4:09 PM CDT

Dear Family and Friends,

We are home after 4 days in the hospital. Karina received 2 blood transfusions and one bag of platelets. She was in good spirits for most of the stay. Dwight and the boys came along this trip since Dwight has minimal work commitments. The boys are an incredible blessing to Karina and actually passed up offers to the zoo and Omniplex Science Center. They just wanted to sit and play cards or keep Karina company. Amazing brothers!!

Thank you so much to the Kuwitzky family for their great investment in time and care for our family this weekend. The boys wanted to buy a house next door and live there forever. We have been blessed to know this family.

Thank you for the many phone calls and cards once again. We received a package from Zion Baptist Church in PA close to where my mom grew up. This amazing body of believers has taken on the job of praying for Karina. We received bookmarks and calendars with people who have promised to pray for Karina each day for the next few months. Amazing and special. Karina can now see each day that someone from Zion Baptist is praying for her. Thank you!!

If I could only relay the depth of love and prayers to her from each of you... I am trying many times each day to tell her. I read the guest book entries and tell her over and over how much she is thought of and prayed for. I think at 5 years old she is thrilled.

Karina has no white blood cells in her blood and no resistance for infection at this point. She will remain at a rock bottom state for the rest of this Block A of treatment. The bone marrow test for complete remission is July 21. The test results from this past Friday's bone marrow test showed 3% down from 50% two weeks ago. We are headed in the right direction. Praise God for good news!!

Karina has lost most of her hair. It is falling out all over the place and in large quantities. She seems to be okay with the thought of being bald. We will have a wig as a back up and she said that she would like to wear it. I keep looking at her face and trying to imagine it with no hair and can't seem to imagine that, but we will see it in the next day or so.

We are hustling around the house this week to catch up on the past few weeks of being away from home and prepare for the packers next Monday. I am working on hook ups, disconnect and change of address info.

As of July 25th our address will be:

8506 Indian Paintbrush Way
Lorton, VA 22079
703-646-5107
ddsones@cox.net

I can't seem to find time to write to those who write on the guest book. There are not enough hours in the day. The kids are all out of school and seem to keep us so busy. Karina enjoys full attention on school work or looking for a snack :). Please know that we read each entry and cherish the words of encouragement deeply. Dwight and I feel passionate about keeping you all informed to better know how to pray for Karina. We feel our spiritual walk and faith is growing daily. We know she is a child of God and a gift for us to cherish and raise while here on earth. We are praying for healing, guidance and wisdom from doctors, her future bone marrow donor, courage for Karina, minimal discomfort and side effects, little pain, Braydin and Torin with transition to VA and strength for all of us as we move.

We got good news while in the hospital that Dwight's brother Eric and his wife Jen had their 4th baby. Jacob Konrad was born yesterday in San Antonio. Congratulations!!!

Thank you for your love and support. We love you all.

Blessings,

Dana

Thursday, July 6, 2006 8:27 PM CDT

Dear Family and Friends,

The blood drive and bone marrow registry was a huge success yesterday. The emotions tied to the experience are more than Dwight and I can describe. I arrived five minutes after the drive started and there was live radio broadcast, fire fighters giving out free hotdogs, volunteers giving free shirts, towels and registering folks for a free grand prize and best of all a line of people waiting to donate. Many people we knew and many that we did not. To see a community center filled with workers, tables, computers, papers and equipment all because of your daughter was an experience we can't forget. Thank you to the many friends who unselfishly donated on behalf of Karina. Our family was deeply touched.

Yesterday Karina did not feel well. She was pale and tired but without fever. Today she declined and developed a fever at 9 am. After the 5 short days at home, I was not packed and prepared as I usually am. We called the hospital and very quickly packed the entire family for a weekend get away in OK City. They admitted Karina to the hospital around 12:30 pm today and have started the protocol for neutropenia. Her blood counts were extremely low and she is now receiving a blood transfusion and will have platelets in the next hour. The fever is coming down and she now has pink lips again and the rosy cheeks are slowly appearing. Thanks Mrs. Abernathy for that A+ blood yesterday (along with many others). It is already being put to use.


One story from yesterday's blood drive was about 5:30 pm as Dwight and I were standing at the door thanking folks as they came in, two Army officers came in. Dwight said Hooah@!! and asked where they were assigned. We knew that they were not from Altus. They were in fact from Lawton, OK (60 miles away) and heard the blood drive announced on the radio. They felt compelled to come and donate. Wow!!! They were recent West Point graduates who obviously learned to do what is right. Dwight was eager to tell them about his dad and brothers all being in the Army and his dad having taught at West Point when Dwight was young. Thank you to two impressive Army soliers!!! Dwight and I have captured the blessings and emotions of yesterday and will carry it in our hearts for a long time. We can face tomorrow easier because of the support we felt yesterday.

Karina has had mouth sores and jaw pain. We learned that the jaw pain is from one of the chemo drugs. The pain will eventually go away, but in the mean time it is tough to eat.

We were due to come to the city tomorrow for a spinal tap with chemo, bone marrow asperation and chemo shots in the legs. If the fever goes down they may still do that tomorrow or postpone until Saturday. We plan on being her until Sunday or so.

Karina was sad to miss the Altus Bulldogs Cheerleaders performing in our front yard today but maybe another day. She is a trooper and seems to understand that going to the hospital generally makes her feel better. She is not excited for the shots even though they will give them to her while she is alseep for the procedures.

Please pray for her strength and courage. Dwight went to the Olive Garden for her favorite meal and bought a new movie.

Our dear friends, the Kuwitzky's from Norman, OK came to the hospital this afternoon and picked up Braydin and Torin for playtime and a sleepover. They hardly waved goodbye to me as they drove off. Chris, Cheryl and the kids have been a true blessing from God and it by no mistake that we are all growing closer to HIM and to each other through this process. Thank you so much for giving our boys a treat that is much deserved. They have been super boys through this ordeal.

Check out Isaiah 40:31. Our friend Nicole recites this to me almost daily. We can soar with God as our wings!

Blessings,
Dana

Tuesday, July 4, 2006 10:52 PM CDT

Dear Family and Friends,

If there is ever a down moment in a day for us, after looking heavenward we need to look no further than the deeply touching guest book entries. Thank you all so much from Japan to Kuwait to Georgia to San Diego. We thank each of you from the bottom of our hearts for praying for Karina. Prayer is all Karina needs.

Last night was a rough night for Karina with an upset stomach and mouth sores from the chemo. She was up every hour or so. She was quiet today but doing alright. The last couple of days she has been able to have playtime with a friend which is the highlight of her day. Thank you Rebecca!! Today, she went to Morgan and Claire's house for scrap booking (our Disney photos), snow cones and pizza!! She also received a Minnie Mouse Nurse holding the Bible verse Isaiah 40:31. Karina just hugged it tight. The verse says," But the people who trust the Lord will become strong again. They will rise up as an eagle in the sky; they will run and not need rest; they will walk and not become tired."


Dwight and I have had many high and many low feelings the past week and a half. There are many things we do not know, but a few we are sure of. We know that God created Karina and delivered her as a gift to us to love and teach about Him. We know that God has a perfect plan, with no mistakes, for her and her life. We know that He hears ALL OF OUR prayers and will answer them according to His purpose. We know that we are asked to cast all our cares upon Him that we are not able to carry the burden. We are now living daily with gratefulness for each of our children.

I have asked my mom to journal for me each time I say, "Guess what God did today?" Just the other day I was praying for Karina a good friend in VA, since she won't be going to public school, that she can have fun with. That afternoon, her precious friend, of 3 years, came to the house and her parents said they had just gotten an assignment to Springfield, VA. That is the town that I grew up in and the town next to Lorton, VA where we will move in 2 weeks. This precious little girl, Allyson, has been through the ups and downs with Karina and loves her just the same. Allyson is vibrant and will be that familiar face in VA.

If you all ever feel like my sounding board, psychologist and journaling friends..............you are!!

Dwight and I cry frequently to think of the suffering that lies ahead for Karina and ask ourselves why cancer would ever have to strike a child. We know God did not "give" Karina cancer, but we do know that he gives her and us the tools to deal with cancer. Our greatest joy these days is to see her smile, skip and adore life.

Tomorrow is the blood drive and bone marrow registry. Dwight and I will take turns to be there for the friends and strangers who care enough to donate. I remember Karina's first blood transfusion. I cried the entire time looking at human blood that someone laid on a table to donate so that my child could live. It is a feeling of thankfulness that no words can describe. I cry just imagining myself there tomorrow. We have made photos of Karina with her info on to give to all of the donors. We hope they post it on their refrigerator and pray, pray, pray. Please pray for a donor match. Would it be amazing if the match was someone from Altus?

Friday morning we head to the city for more chemo as I spoke of on the last entry. I will write on Friday evening to let you all know how the bone marrow is looking. We are praying for no cancer cells.

With deepest appreciation to each of you. I wish I could reply to each of you. Please know that we love you all.

Blessings,
Dana

Saturday, July 1, 2006 3:58 PM CDT

Dear Family and Friends,

WE ARE HOME!!! Thank you for the overwhelming reply to the guest book. We truly can face tomorrow with great hope that our Lord and Healer will hear our prayers. Each message touches our hearts deeply and we feel stronger because of the love and care you write about for our family. I really don't have the words to express our feelings of gratitude.

Karina received chemo by shots yesterday and the doctors chose not to do the bone marrow biopsy that was scheduled because it was just an FYI and the results would not change the direction of her care.

We will go back this Friday (July 7) for a spinal tap (to inject chemo) and a bone marrow test. The doctors will be looking for early remission. She will also receive a dose of vincristine. She is on heavy steroids this week along with other things which have "kicked in" the increased appetite and mood swings. She is in good spirits because of the cards and friends stopping by, quiet because she really does not feel great and so happy to be home. She and her daddy are working on a 500 piece puzzle and in-between we are preparing the house for the move cleaning out. The boys are swimming in the pool out back only after a 1 1/2 search with mommy for frogs earlier.

We are trying desperately to bring life back to normal for our family. We are having a cookout with friend’s tomorrow evening and are realizing our time in Altus is coming to an end. I am not sure of many things about moving to VA but I am sure that we are going to miss our friends in Altus terribly. The outreach of this town is astounding and has moved us emotionally.

On Thursday evening I received a call from our dear friend Nicole who wanted to organize a blood drive and bone marrow registry in honor of Karina. One hour later, she called back and had it set for this Wednesday (5 July)at the community center in Altus and July 28th on the base. Thank you to Suzanne from Oklahoma Blood Institute for sending it to the radio station, newspaper and email chain. Thank you to my friends Kelly, Gabrielle and Cheryl for the major advertising campaign to spread the word. Thank you, Nicole for being my friend, doctor and thinker when I can not. That is an example of the kind of people who live in and love Altus, OK.

OBI Blood Drive and Bone Marrow Registry
Altus Community Center
Wednesday July 5 12-6 pm
Blood donation - free
Bone marrow registry (nationally) $20, scholarships available for those unable to pay

Watch for details for the Altus AFB blood and bone marrow drive which will be July 28th.

Please know that by donating blood, Karina will receive credit in her name and registering your bone marrow may or may not be a match for Karina. You bone marrow may be needed for someone across the U.S.

We have received many packages and cards and we want to thank each of you. We have also have had many offers to help us in anyway including traveling from other states. Thank you so much. We are doing fine right now.

Thank you for your prayers cards and love. We pray that your faith grows as we battle this journey together. God is good, faithful and has a plan for Karina. He made Karina with amazing courage and strength. Joshua 1:9 says, "Remember that I command you to be strong and brave. Don't be afraid, because the LORD your God will be with you everywhere you go."

Blessings,
Dana

Thursday, June 29, 2006 3:08 PM CDT

Dear Family and Friends,

Today we received news that the prelimilary results of the boys blood is not an exact match for Karina. This means that they will not be her donor and we will have to work through a national registry for a match. I know that this is God's plan and we are praying for that person who will be a match for her. We pray that the person is healthy, will be available and will see God through each step.

Many of you have asked if you can donate blood to be checked for a match. Yes, but I do not know a lot just yet. To become a donor, you need give blood and have it typed. There are 6 categories that will be compared. This will put you in a national registry and would increase Karina's ( and many other children will cancer or blood disorders ) chances of a match and survival. I will find out more and let you all know. My guess would be to call the Red Cross or your local blood bank and they can direct you.

Yesterday, Karina woke up feeling well and after eating a happy meal, became very sick. She threw up off and on all day and inbetween she slept. She had friends come from Altus yesterday and they were so sweet to just sit with her. Thank you Angie, Lucas, Kelly and Remy. You brightened a not so bright day.

Karina received a call from Cinderella the other night and she wished her a good night sleep. Too cute and a real thrill!! Thanks, Nicole.

Our friends from Norman came and spent the day on Sunday and again on Tuesday evening. We are so grateful for their love and support. This precious family "found" our website and have opened their hearts to us. Ten years ago their daughter was diagnosed with the same type of leukemia and is now cured. They are such a source of strength and encouragement to us. They were at the hospital initially to help us keep our heads on straight and remind us how much Jesus loves Karina and has a plan for her.

Today Karina is feeling good. She has eaten well without nausea and is sitting with me doing crafts.

Please keep praying for her health. We do not have to be back at the hospital until next Friday. We will have two doses of chemo tomorrow and head home. Finally. Karina is in good spirits and we are excited to see home again.

I have cherished the phone calls and prayers said for Karina. I sometimes wonder how I can relay the blessings we are receiving on to Karina. I read her your journal entries and pray over her precious body daily. She has loved hearing her friends voices on the phone.

We feel tremendous love and support from each of you and from our heavenly father. God is bigger than the drugs and the statistics and we stand on that in faith.

Blessings,

Dana

Tuesday, June 27, 2006 11:06 AM CDT

Dear Family and Friends,

Karina is doing much better today. Saturday and Sunday were very tough days for her as she received high doses of chemo. Thankfully she is feeling better today. As you can imagine she is tired of being in the hospital and we are watching for no fever.

Yesterday two of Karina's dearest friends from school came to the city to visit. Their precious moms are great friends and I am thankful for them. Karina, Allyson and Remy had a wonderful day together talking, crafting, puzzling and painting flower pots. Karina needed to see these two special friends as they brought a ray of sunshine to our day. Thank you Amy and Kelly!!

Karina had a fever yesterday at noon time and we have to be without fever for 24 hours before they will let us go home. We got great news that Karina's blood counts come up today.

Last night I was talking to my parents on the phone and asked my mom to journal every time I tell them about something that God is doing to show us He is in control, knows just what we are going through and speaks to us in big and small ways.

I would have to write for the next few hours to tell you, but know that we feel God's presence in our lives daily and somethimes every hour. Karina is God's child and a gift to our family!! We are lifting her precious life to Him and asking for healing. God is bigger than all the statistics and all the chemo drugs. We stand on his promises in the Bible.

I want you all to know that the sincere messages you have written on the guest book are a blessing. Thank you for praying for Karina and helping our family carry this burden to our heavenly father. We draw strength from each one and feel touched beyond words by your encouragement. Thank you for loving our sweet Karina. She is strong and tough and knows that we all love her very much.

Dwight is holding down the fort in Altus with the boys and doing an amazing job of cooking, answering calls, playing ball with the boys, laundry and rescheduling move dates. His plate is very full and pray for him to have patience and peace.

We are shifting our move to VA by a few weeks. We will be shipping our goods around July 20th and allowing our parents to accept them and unpack as much as they would like. Karina will have a bone marrow biopsy on the 22th to check for remission. If she is in remission, we will try to fly to VA sometime that next week.

Please pray specifically for an exact match with one of her brothers for the bone marrow transplant later in treatment. We won't know for 2 weeks. Also, pray for remission of the cancer. Karina's cancer is as fiesty as she!!! We want to beat it!!

Thank you for loving our family, praying and writing to us. I love hearing from you on the phone as well.

Pray on!!!

Blessings,

Dana

Saturday, June 24, 2006 3:31 PM CDT

Dear Family and Friends,

Thank you for the encouraging messages on the guest book and for the phone calls. Our family has felt your genuine love for our family. This morning was a day that I truly did not want to open my eyes and see day light. The road we now face has profoundly changed our family.

Karina had a rough night as she developed an ear infection. It came on suddenly and caused a lot of pain. It is feeling better this morning and her fever is coming down. She had a spinal tap this morning to begin the new rounds of chemotherapy. The doctor was looking for cancer cells in her spinal fluid and putting chemo into the fluid. We pray for no cancer cells there.

At 1 pm today she received two more strong chemo drugs and is back on steroids for 28 days. We are now approaching complete hair loss, mouth sores, weight gain and increased appetite. Those of you who see Karina often may remember that she gained 10 obs in 2 weeks last year when she was first diagnosed. She has slept on and off most of the day which is very unusual for Karina.

God is showing us in small and large ways that He is in control and we see glimmers of light. Thank you to Amy and Jill for the wonderful surprise visit. I needed to see their beautiful faces and hear their strong faith that Satan will not control our hearts with this immence challenge.

I will write more as we learn more. We did learn that the cancer is the same type as 16 months ago, ALL. It is very rare for children to relapse while on therapy like Karina. We have 3 blocks of treatment which will last 4-6 weeks each. After each block is complete, she must remain in remission. Later this year, Karina will receive a bone marrow transplant (stem cell). Here brothers will each be typed to see if they are an exact match. Each one has a 25% chance. Please pray for this test result which we will not know for about 2 weeks.

The information on the new protocol, drugs and side effects is more than our hearts and minds can digest today. We will take each day with God's divine power to press forward with hope and optimism. We want to claim healing and victory in Karina and know that God is all powerful and all knowing!!

We love each of you and are deeply touched by your love for our family and especially Karina!!!

Blessings,

Dana

Friday, June 23, 2006 3:35 PM CDT

Dear Family and Friends,

We are deeply saddened today to learn that Karina's cancer has come back. She has relapsed. This morning she had a bone marrow asperation and the blood showed many cancer cells. The cells look very different than the cells of her original diagnosis. The doctor is not sure at this point if they are the same ALL cells or a different type of cancer or leukemia.

Dwight and the boys came up early this afternoon and Karina and I were so happy to see familiar and happy faces. The boys are a breath of fresh air and Karina has not stopped laughing and smiling with them. Praise God for our boys and their precious and loving friendship with their sister.

God knows the path for Karina. He provides her strength beyond our imagination. God is in control and we know He will carry us through this journey.

Dwight best described our feelings at this point. We feel as if we were running a marathon and were half way done and someone stops us and says we need to start over. We are back at the beginning in every sense of treatment. The prognosis changes, the drugs change and we have to ask for renewed strength from our heavenly father. He will provide.

Life has changed for our family as of two hours ago, but our family, friends and God have not!! Thank you to those who have already called and the lovely cookie basket from our dear neighbors.

Karina is tired and has a bit of a headache. She is not in pain or sick. The fever is gone. She is a bit emotional at times. She is not scared and knows God loves her and we do too.

Feel free to call us. 405-271-4134.

Thank you for praying.

Blessings,

Dana

Thursday, June 22, 2006 10:44 AM CDT

Dear Friends and Family,

I want to update you all on our vacation to Florida. We had a wonderful trip to the sunshine state and were able to visit the Florida Aquarium, Lowry Park Zoo, Magic Kingdom, Animal Kingdom, Epcot, Clearwater beach X3, Honeymoon island X6 many yummy restaurants, a day with the Veltman Family, an evening with Tom, Jan and Laney Duttry and a visit from Jamie and Bret Carlson. Our trip was a welcoming break from the busy lives we have had as a family in OK.

We had Karina's blood checked on Monday at Macdill AFB in Tampa and it was shockingly low. We flew out Tuesday morning with a mask on Karina and were praying for no fever...........or at least not until we make it back to OK. God allowed us to arrive in OK City at 12:30 pm and Karina developed a fever. We made a straight shot over to the Children's hospital and Karina was admitted. It is now Thursday morning and she is still running a fever even with Tylenol. The fever was holding at 104 degrees and has lowered to 101. That is still a fever and we will stay 2 days after the fever is gone. Her white blood count absent, which means she is at extreme risk of a bacterial infection. She is on IV antibiotics just in case the infection is bacterial. So far nothing has shown up and she has no other symptoms. We are all wondering why the fever.

Tomorrow if the fever is not gone, the doctor will do a bone marrow test to rule out that the cancer is not back. This is heavy on our hearts and we ask your faithful prayers that her bone marrow is free of cancer. God is in control and we know the path is paved for us. This is invasive and painful and we pray that Karina does not have to endure anymore.

Karina is in good spirits and is awaiting my return with a craft for her to work on. So, I will close for now and write again tomorrow.

Blessings to you all.

Dana

Thursday, June 1, 2006 10:16 PM CDT

Dear family and friends,

Karina and I made our trip to OK city yesterday for more chemo. This visit was her 3 month visit which is a spinal tap to inject chemo into her spinal fluid, back on steroids for 7 days and a dose of vincristine. This is the drug that causes neurological side effects and makes her hair fall out.

We got up very early and arrived 30 minutes before her scheduled apt to "get in line" for the spinal tap. I am continually disappointed at the lack of promptness to get the procedure done. Karina is not allowed to eat or drink after midnight the night before. We leave 3 hours before her apt then arrive to the clinic to wait 3 more hours before her spinal tap even begins. It is an inconsiderate system for families who commute long distances like us. All that complaining now on the table only to tell you this contributes to Karina's fear and frustration. To know what is coming and wait hour upon hour for the "pain" drives me mad. The mommy bear begins to show in me and the nurses hop to it and get the job done. Karina was scared this time and seems to ask more questions each visit. She did a super job and woke up shortly after the procedure only to stumble out of the clinic as quick as she could.

Karina's rash is clearing up beautifully. We are doing our best to keep her out of the sun. That is hard to do in SW Oklahoma and for a child who loves to be outside.

We stopped in Lawton, OK for a late lunch and shopping and had a good time together.

This morning, Dwight gave up his command position after 26 months of very hard work. It was a beautiful ceremony in a hanger with a KC-135 inside. We now have a period of time to decompress. We leave for FL next Tuesday for 2 weeks and will be home about 2 weeks after that before the packers come.


Thank you for the love and prayers for Karina and our family.


Blessings,

Dana

Tuesday, May 23, 2006 10:19 PM CDT

Dear Family and Friends,

May 11 was long ago and the days are passing as if they are mere hours. Our family is preparing for a big change. Dwight is leaving his command position June 1 here at Altus AFB. The past 26 months have been a journey that has changed our lives forever. The opportunity to lead in the Air Force has been the most rewarding part of Dwight's life. I have had the opportunity to serve by coordinating the spouse group. These women are the providers of the love and encouragement I have received since Feb 8, 2005. I am forever grateful for each of them.

Karina has been fighting a cold for about the past 10 days. She can not seem to beat it so we went to the local doctor today. He is going to try a stronger decongestant. About a week ago, Karina developed a rash on her face. It seemed to have good and bad days. It is now looking pretty bad and has traveled down her neck and arms. The doctors in the city seem to think it is from her daily chemo drug and may hang around for a very long tome to come. We will have it looked out next week when we are in the city.

Karina had blood work done yesterday and it was perfect for chemo today. She is on schedule and taking her last dose tonight at 2 am. Praise God for giving her body the power to fight the cold and chemo drugs at the same time. Oh, me of little faith, I was surprised to see good numbers yesterday. God is with us every minute and he has her in his hands. Thanks for the reminder!!

Thank you for praying for Karina and our family during this very busy time in our lives. The boys are doing great and rolling with the punches.

Blessings,

Dana

Thursday, May 11, 2006 9:55 PM CDT

Dear Family and Friends,

No news is good news. I really have no huge news to report other than Karina is doing great. She feels strong, has missed no school and is getting ready for Kindergarten graduation and her ballet recital. Life feels so close to normal for us and we are grateful for God's healing touch on her.

Karina had chemo two days ago and is doing great. I sit here writing with a grin on my face of pure joy for God's grace and faithfulness to carry us through good and bad times. In the past few weeks I have gotten to the point that I am not thinking about leukemia all day every day as I have for the past year. Praise God for taking our burdens and carrying them for us.

I hope you all are well. I have posted new photos. Our family loves you all and we thank you for praying for our sweet Karina.

Blessings,

Dana

Monday, May 1, 2006 9:10 PM CDT

Dear Family and Friends,

All is well and just a few details to report. Our trip to the city for Karina's appointment went well last week. Her blood counts are staying so perfectly within range that she now has her blood checked every other week. The weekly blood checks may be gone for good. They doctor feels that the lower dosage of daily chemo is doing the job and they will keep her here until July and reevaluate before we move. We are not due back in the city until May 30 for her next spinal tap, vincristine (the drug that makes her hair fall out) and steroids for 7 days.

Karina has had a wonderful week of school, soccer and swimming in the backyard. She seems to feel very strong the majority of the time. Today her teacher called and said Karina was complaining of feeling dizzy. I picked her up early, gave her a snack, a trip to Happy Donuts and then she rode her bike well over two miles. Who knows?

Our family is looking forward to a very busy May. My parents will be coming for a visit, which is always so fun for our family. In June we head to Florida for a 2 week vacation that we have sure anticipated. Our move to VA is set for the middle of July. We learned today that we will be renting Dwight's brothers house in Lorton, VA, for sure.

Our prayer is that Karina continues to be strong, mentally and physically. Today in the car, she was explaining to her brother what you need to do to be a Christian and how we are all sinners, we can ask forgiveness when we sin and that she is going to heaven when she dies. What a great job she did explaining her faith and at the end she said that she wanted him to be a Christian too so they can all be in heaven together.

Thank you for your prayer and support. Just when I start to think we are on the journey alone, God blesses me through someone else. After Karina's soccer practice tonight, one of her coaches stopped me to say she has wanted to run a marathon for Leukemia and Lymphoma Society for the past few years. She is considering training for it asked if she could run in honor of Karina and another brave young man who has beat cancer in our town. Wow!!! I told her when she decides, I would support her however possible.

Thank you.

Dana

Thursday, April 20, 2006 10:35 PM CDT

Dear Family and Friends,

Here is a quick update on Karina. Her chemo went well last Tuesday. Wednesday morning our family left for 6 days in San Antonio, TX. We had a wonderful time as a family visiting friends, sight seeing and spending time with Dwight's younger brother and his family.

Karina stayed healthy and enjoyed the trip so much. It was a real Sones family get away filled with fun and relaxation. Much needed for the friends who know about our lives here in Altus.

The second day of our trip, we went to Sea World. This was our kid’s first experience with a theme park. The first show that we saw was called "Viva" and it was a team of high divers that performed to amazing music with dolphins. I felt emotional throughout the show for two reasons. First, the talent was amazing and the show was so beautiful. Second, to look back one year ago I never imagined our family sitting there enjoying life in such a normal way. Karina stood throughout the whole entire 40 minute show. She was overwhelmed and seemed to take in the wonder and talent of the performers.

Life seems so routine and basic at times for me as I plow through each day until I look closely at Karina. That zest for life she's had since a toddler, now has multiplied times 10. I wonder what her precious mind thinks when her eyes take in new adventures.

Today, we went on a bike ride and she asked to ride on the paralleled side walk. I said sure and she proceeded to pedal absolutely as fast as her legs would let her to the far end of the street. She waited for us then pedaled all the way back to us, again as fast as she could.

As an adult, we can explain and express ourselves when trails or tragedy come, but children seem to cope through behavior. Karina is doing great.

We head to the city for a doctors apt on Monday. She is being watched a little closer since they have lowered her chemo drugs. They will remain low for a few more weeks and then (probably) increased to the regular dosage.


Thank you for the encouraging entries, cards and phone calls. We love each of you and feel your love and support from every direction.

Blessings,

Dana

Thursday, April 6, 2006 9:53 PM CDT

Dear Family and Friends,

Karina is doing well. She woke on Sunday morning (3:45 am) with a fever and we decided to pray, take some Tylenol and go back to sleep. God heard our prayer and by morning the fever was gone. She did end up with a bad cold and missed school on Monday and Tuesday. She seems to be feeling well but has a cough that is persistent and very bothersome at night. Her counts were 1600 on Monday and that was wonderful news. Her numbers were great overall.

Soccer season is in full swing and we are on the soccer field 4 or 5 evenings a week for the month of April. Too busy but so relaxing and enjoyable to watch the kids having so much fun. Karina's team is the lemon Starbursts. And trust me when I say lemon. I will post pictures next week and you can see for yourself. Karina is so excited to be playing soccer with her friends.

Today was a milestone. Karina went to the dentist. This was her first trip back since before she was diagnosed. Her blood counts have been too low and we have made and cancelled many appointments. We got a heavy dose of antibiotic to take 30 minutes before the apt and when we opened the bottle, they were the size of horse pills. Her eyes got huge. I explained what a capsule was and when she swallowed to keep drinking water and it would go right down. Sure enough, she took 4 of them without complaint. That says how excited she was to go to the dentist. No cavities and all went well.

Next week our family will be going to San Antonio, TX for the Easter weekend. We are excited for our trip out of town and will get to see Dwight's younger brother Eric and his wife and children as well as a few old friends.

Thank you for praying. Life has been very busy the past few weeks and will continue through May for our family. Please know that we embrace your prayers for Karina and know our Heavenly Father is listening and watching over her. Please pray her cold goes away on its own and does not cause her blood counts to go down. She is due for treatment next Tuesday.

Blessings to you all.
Dana

Wednesday, March 29, 2006 9:26 PM CST

Romans 12:12
“Be joyful because you have hope. Be patient when trouble come, and pray at all times."

Dear Family and Friends,

Karina is doing great. I think the lower dosage of daily chemo drug is the trick. Her counts were outstanding on Monday and she had home chemo yesterday. She has had very little nausea and looks so good. She has a ton of energy and we are so pleased.

Not much more to report. Our family is way too busy as Karina and Braydin started soccer practice with their first game this Saturday. Karina is so happy to be playing and keeps up with the team, smiling as she goes.

Thank you for the prayers and embracing words on the guestbook.

Blessings,
Dana

Wednesday, March 22, 2006 9:35 PM CST

Dear family and friends,

Just another quick update. Things are very busy around our house these days but I have to stop and share great news. Thank you for praying for Karina. The doctors lowered her dose of daily chemo and it has worked like a charm. We had a routine apt in OK City today and her counts which are usually rock bottom at this point after chemo last week were perfect and in the range they like to see. This means that the change in medicine is working.

We had a physical exam and that went well. She is getting braver and braver with accessing her port. We ate at the Olive Garden, surprise, and came home. She and Torin slept the whole way home which allowed me time to think and pray.

Yesterday afternoon we had a sweet visit from our dear friend Shelly Coggin and her daughter Riley. They had a beautiful stuffed bunny and huge card from the 5th and 6th grade Sunday school class at their church (First United Methodist Church, Altus). This bunny was taken by many people and prayed over for the last month, with Karina in mind, then presented to her as a loving reminder of those who prayed for her. How neat!!! Karina loves the bunny and it rode in a car seat to the city and back today.

Just after Shelly and Riley left the house, Karina told me she wanted to have Jesus live in her heart. In our kitchen, Karina prayed with me and accepted Jesus into her heart. Our family rejoiced with Karina and today she asked me to tell the nursing staff what she had done. Sadly, it was not familiar to them. We shared anyway and are looking forward to telling her teacher and the staff at her school of this great decision.

Thank you all for your endurance to pray for Karina. The road is long but the journey is never lonely with you all!1

Blessings,

Dana

Thursday, March 16, 2006 8:40 PM CST

Dear Family and friends,

Praise God for great blood results on Monday. Thank you so much for your faithful prayers. God is good and we are reminded that he is in control of Karina and our lives and he does hear our prayers. Her numbers were super and she had her chemo on Tuesday. She did great!! We are enjoying our last few days in VA. When the nurse called us on Monday with Karina's blood tests, she said that the doctors want to reduce her daily chemo medicine. They feel it is causing her blood counts to stay too low causing her to miss treatments. This is a good thing but a little scary as she will not have as much medicine in her body on a daily basis. In the future if her blood becomes more level, they will increase the dose back up to what is was.

One last day in VA to soak up our family and cousins. Again, know that we feel your prayers as it brings a calm to my heart, especially at night, to know that Karina is lifted up to the ultimate healer. I send my deepest thanks and love to each of you.

I will be back in touch after we get back to OK and settled.

Blessings,

Dana

Saturday, March 11, 2006 9:10 PM CST

Dear Family and Friends,

I am in Virginia with the kids for two weeks and I have taken the past week "off" to spend time with my in-laws and house hunt as we will be moving to this area in July.

A quick update on Karina. Last Monday we had her blood checked here in VA and her levels were very low. Her hemoglobin also fell low and is on the borderline for another blood transfusion. It is very discouraging but we know that God has Karina resting in Him. Karina has been off all chemo drugs for two weeks and we will go back Monday morning for another blood check. Please pray that her levels will miraciously rise, that she will receive her much needed chemotherapy on Tuesday and that she does not need a blood transfusion.

God has made his presence known this week in many ways and we give him the glory for providing energy for Karina. She was not feeling too well earlier this week, but now seems to be back to her old self.

We have been blessed to see old friends here in VA who love us and have lifted Karina up in prayer this week, especially. It feels so good to be back home. Thank you Dan and Mary, Marlene, Kathy, Mr. and Mrs. Petros and Maribeth for your kindness and support.

The kids have spent precious time with their grandparents and we all feel the calm and peacefulness of being on vacation. Thank you God for this much needed break from our normal routine.

Dwight, on the other hand, is in deep with a very big inspection of his squadron this next 10 days. He would appreciate prayer for energy and a great outcome.

Blessings,

Dana

Tuesday, February 28, 2006 8:58 PM CST

Dear family and friends,

We have one dose of steroids left tomorrow morning and thank goodness. The effects are evident today as Karina has those large, sweet and firm cheeks and tummy. Karina had her blood checked yesterday and her AGC number is too low for chemo at home today. We are bummed as it just seems to feel like forever between treatments. Her blood levels should be evening out by now and they just aren’t. The roller coaster that her blood is on leaves me on the same ride unsure of what tomorrow holds. Karina has not felt well today. She is very tired but not wanting to take a minute out of her day for a nap. She did not go to school but joined the class for an hour at the park for lunch. She loved that time with her class but feeling lousy quickly returned to her sweet spirit. No energy for ballet today. Karina has a new constant cough that is bothersome to her and most likely from allergy issues.

Thank you to our friend, Veronica, for the encouraging words this evening to Karina that naps aren’t for the tired, but all princesses need their beauty rest. So, Princess Karina best get her beauty rest tomorrow!!

We leave on Saturday for 2 weeks to Virginia and still have that planned. We will check Karina's blood levels both Monday's that we are gone and hopefully will press on with chemo next week.

We appreciate your prayers. I am headed off to do my Bible Study which happens to be on calming my anxious heart. My precious friends knew what I needed when they invited me to this great study.

Philippians 4:13
"I can do all things through Christ, because he gives me strength."

Blessings,

Dana

Friday, February 24, 2006 9:41 PM CST

Dear Family and Friends,

We are home and glad to be back in the saddle. Karina went back to school Thursday and Friday after being home for 2 1/2 weeks. She was the first one up and dressed ready for school and really enjoyed being back with Mrs. King and her friends.

I want to thank everyone for the extra prayers and outreach this week. The change of plans for Karina was a spiritual speed bump. But as we faithfully see blessings, we know God is leading us down this road. I always enjoy sharing stories and answered prayers during these extra challenging times. I hope it nourishes your faith as it does mine.

Karina had a doctor’s appointment on Tuesday afternoon and that went well. She is becoming braver about the nurses accessing her port. It is a scary procedure but not painful. We cover the port sight with numbing cream well before the needle is inserted to prevent pain. We then were admitted to the hospital to receive blood. They placed us on the 6th floor, bone marrow transplant unit, which is a place we had never seen and pray to never be in the future. They call it the penthouse because it is the top floor and a very nice environment. The children there are receiving stem cells and bone marrow transplants. It is a quiet and sterile place. It did not take long to realize that I rather be down on the 3rd floor, which is not very nice, have a roommate and be in remission. Karina received her blood transfusion from 9pm to midnight and did great. She did not have any reactions and woke up the next morning with rosy cheeks.

Karina had a spinal tap on Wed morning in our room which is something we have never done. It went very well and we left for home by 2 pm.

Our friend Cheryl drove up from Norman to be with us and she brought Karina a very special book signed by an author she had met and also delicious cupcakes. Thank you so much for coming to comfort us and help us. Help us is an understatement. On Tuesday evening Karina realized she had lost her favorite stuffed animals and blanket somewhere in the hospital. I walked the hospital high and low on Wednesday morning looking to no avail. Karina was become noticeably upset because she thought they were gone forever. When Cheryl arrived that morning she asked what she could do and I said please help us find those animals. So, she did. She found them in a closet in the outpatient clinic that I had walked by and never thought to open. Just as Karina was receiving sedation for her spinal tap, Cheryl comes running in to save the day with the animals. The joy on Karina's face brought her whole body to a calm allowing the procedure to go perfectly. God brought Cheryl to the hospital for that divine moment, I am sure of it!!

Our trip up to the city was not complete without two meals at Macaroni Grill, totally all for Karina. I promise!! The second stop at Macaroni Grill was on our way home our waiter asked if we girls were out shopping for the day. I politely said no and said Karina had been in for chemotherapy treatment and we were on our way home. He said wow, gave her a high five and proceeded to offer her dessert. She declined all the choices until he said chocolate cake. Her eyes lit up and he brought us the biggest, warmest piece of gooey chocolate cake I have ever seen. Karina and I dove in and laughed at the fun we were having enjoying it thoroughly. When I received the bill, it said "birthday cake, $.01". Wow!!! God shows us in small ways too that He is present in our lives.

Yesterday after Karina's big day back at school, we arrived home to packages. One was from her friends Jaqi, Morgan and Valerie with beautiful hand made cards and sweet messages. Also there was a beautiful Raggedy Ann doll from Valerie for Karina to borrow until she feels better. How sweet!! For mom and dad were delicious scones and then a large package. In the large box were 3 beautiful handmade blankets from my cousin’s wife, Sharyn. The boys were so excited to have their own gift too. they love those soft blankets. In the card, Sharyn said she wanted to have them made to give to Karina back on her one year anniversary a few weeks ago. That very day was a great day to celebrate Karina's life.

I could tell you about blessing after blessing we received. We so strongly feel God's presence in Karina's life. Karina is a tough and brave girl not by her own strength. She seems to be feeling good other than getting very tired. She is back on crazy steroids again for a week and we already see the mood swings and hearty appetite.

We left the hospital again thankful for the normal life Karina is able to live, thankful for the science of medicine, smart doctors, a hospital that cares about children and our eyes to see we truly have so much.

Blessings,

Dana

Monday, February 20, 2006 10:19 PM CST

Dear Family and Friends,

I want to quickly update you on Karina. Today, as every Monday, we have her blood checked and her Hemoglobin was extremely low. The hematology/oncology clinic in OK city called immediately and said she needs a blood transfusion. We were scheduled to go up on Wednesday for a scheduled appointment and spinal tap so now we will go up tomorrow, Tuesday, and be admitted. She will receive the blood transfusion Tuesday evening and Wednesday morning will have the spinal tap and receive vincristine. These two procedures could be done on an outpatient basis but would take longer and leave us in a hotel over night. We feel blessed actually because we hope to be first in line for the spinal tap on Wednesday morning. The nurses were considerate to come up with a plan that worked best for us and them.

Dwight will be able to take care of the boys and I am thankful for that stability for them. Karina and I hope to be watching the Olympics tomorrow night to help time pass in the hospital. That is exciting for us to have something to look forward to. Karina asked if we can go shopping before we go to the hospital. She won't have to drag me.

We have much to be thankful for. The ice that hit OK City is due to be gone by tomorrow, we enjoyed a wonderfully relaxing weekend at home as a family and became addicted to the game Frustration, Karina made it to church and Sunday School yesterday, Karina's sinus infection seems to be gone, Karina feels great and is in good spirits and we feel God's hand of protection on us.

Please pray that the two days go smoothly. That Karina does not have a reaction to the blood. That there are no surprises and that Karina can remain strong and brave.

Thank you for praying for our sweet Karina. Daily we realize her precious life is a gift to us. She is a beautiful little girl inside and out. Thank you for loving her with us and we pray you feel blessed as our prayers are answered daily.

Blessings,
Dana

Wednesday, February 8, 2006 9:09 PM CST

Dear Family and Friends,

What a week we have had and it is only Wednesday. Thank you for praying for Karina today and what we thought would be a day in the city. We got a call at 5 pm last night from a nurse in the city and she said they had made a mistake in scheduling and Karina was not due for her spinal tap etc......for two more weeks. So we have rescheduled her apt for Feb 22. I was sure hoping to get that out of the way, but God's timing is better than mine. He also knows when Karina's body is ready for chemo.
Last Friday Karina started to come down with a cold. She has suffered from allergies since her diagnosis but this turned ugly by Sunday evening. She developed a high fever which sent us directly to the ER. We went on Monday afternoon to our local ER which did a super job caring for Karina. They did every test under the sun and found nothing and sent us home. Karina's symptoms continued to worsen and so did her fever. So today, we were sent back to the ER for more blood work and tests. This doctor "listened" carefully to her symptoms and did a head X-ray and saw that her nasal passages were blocked. She has sinusitis and infection. They prescribed 20 days of antibiotics so we should be in good shape in a few days. Fevers are scary for a girl with no immune system. Her blood counts took a significant dive from Monday to today. We pray these come back up quickly as she is due for chemo next Tuesday.
Precisely why God knows when her body is ready. It would have been devastating to put her body through a spinal tap and more chemo in the state she is in.
I have to brag about our local hospital here in Altus. They have worked so quickly and professionally each time we have been there. There is something to say about small town hospitals and hard working people who care. Another thing we will miss about Altus when we move!!

Today is Karina's one year anniversary of her diagnosis. Our new friend Cheryl was all set to surprise Karina in the city today with balloons and cupcakes. Thank you for being flexible, Cheryl. We made the best of the day. My parents, sister and grandparents sent flowers and Dwight's mom sent Karina a beautiful gold necklace with ivory heart pendant. Dwight's mom purchased this necklace when she was 21 years old. What a special gift. She wore it all day.

The boys are both healthy and going strong. Torin hit the back of his head today and has a very large goose egg. It is sore for him. The kids are off school Friday and I am ready for this week to end and a long weekend to start.

In the middle of all of this, poor Dwight came down with a fever Sunday night and all day Monday. He slept for 22 hours on Monday. He was back at work Tuesday and today is feeling close to 100%.

How is that for a week?! Daily, we see God's hand, answered prayers, grace, comfort and guidance. He is faithful and we sure could not stand alone through tough times without Him.

Thank you for the cards and gifts this week. Karina's special mystery friend "Pinky the Angel" struck again. This special friend has surprised Karina with a gift in the mail on a regular basis and each time Karina says, "Wow, they must love me and pray for me."

One more story I can't leave out. On Saturday, Karina and I went to a Princess Party where we got to dress up and be treated to an afternoon of being princesses. When we arrived home, there was a package for Karina. Inside was homemade Valentine’s Day cookies, bracelets, a stuffed animal, a beautiful album of hand written messages of hope to Karina and a small Bible in a box. This package was special in so many ways. It was from a special young lady whom we have never met who attends Zion Baptist Church in Pennsylvania. This is the small country church that my relatives attend as well as the church of my late great grandmother. (My mom recognized many of the names signed on the messages.) The album is so beautifully put together and special to Karina. She has carried it all over the place. Inside the small bible was a note from an old family friend Grace Johnston. The note said that the Bible had belonged to my great grandmother and was purchased at an estate sale after she passed away. Mrs. Johnston was giving Karina something so special to all of us who knew my great grandmother. My Nana taught children's Sunday school for 50 years and loved children and God. Thank you Mrs. Johnston for sharing such a special gift with Karina.

Blessing to you all and thank you for faithfully praying for Karina.
Dana

Wednesday, February 1, 2006 9:05 PM CST

Dear Family and Friends,

This past weekend our family got to fast forward our lives 10 years from now!!! We got to meet a leukemia survivor who is now 15 years old. This was Karina's first time meeting a person who went through what she is going through and is a perfect young lady now.

A few weeks ago we received a guest book entry from a lady named Cheryl Kuwitzky. We did not know her or how she found our website but felt blessed by her message and encouraging words. You can go back and read her message. She has a 15 year old daughter named Chelsea who was diagnosed with leukemia at 5 1/2 y/o and has been in remission 9 years. She is now a beautiful 15 year old Christian young lady who makes no bones about her faith in god and his healing in her life.

Cheryl invited our family to their home in Norman, OK this past weekend and we spent the day with this wonderful family. Our families had many things in common, number one being our faith in God. We sat for hours and shared stories, feelings, asked questions etc......getting to know each other. It was a day of encouragement and light at the end of the tunnel for all of us. Chelsea and her friend Lizzy played with Karina and did all kinds of crazy things with her hair. Our boys had so much fun playing with their two boys in their lovely home. We will remember this day for many years to come as they reached out to us and blessed our family with their support and encouragement. We hope to keep in touch with them for many years to come. Thank you so much Kuwitzky family!!

Karina is doing well. She had another round of chemotherapy from home yesterday and will take the follow up medicine tomorrow to help clear the chemo from her system. Last night she developed a rash pretty much all over her including her face. The nurse is not sure what it is so we are watching it. They think it may be a combination of the chemo drug and dry weather. So tonight we have serious lotion on her and a humidifier going full blast. We will watch it over the next few days and see if it changes. Karina is in great spirits and seems to have a ton of energy. It is so good to see her back to herself after the past 3 or 4 weeks of fatigue.

Please be praying for our next appointment in the city next wed the 8th. She will have a spinal tap, chemotherapy through her port (the drug that makes her hair fall out and has temporary side effects) and will go back on steroids for 7 days. That very day will be her 1 year anniversary for her diagnosis. We could choose to mourn the day of our deepest sadness but instead we are going to celebrate one more year of life with Karina and one year of chemo done!!!

Thank you for your love, support and prayers!!! We love you all and are blessed daily by your encouragement. This is a long road to travel and we know God has placed you on our path to make the journey together. Thank you.

Blessings,
Dana

Wednesday, January 25, 2006 9:08 PM CST

Dear Family and Friends,

Karina recovered from her fever quickly and the very next day she was started back on her chemotherapy. She had been off it for 4 weeks and her body was not happy about the harsh drugs revisiting. Karina felt pretty lousy all of last week until this past Sunday. She was very nauseous and took anti-nausea medication around the clock. We are grateful for this miracle drug called Zofran that truly gives Karina a quality of life on those tough weeks. It is very expensive and precious to us. Karina should not really be feeling so sick, but it may also be from the nightly chemo drug that she will take for the full 3 years. That is something we will just have to deal with, a part of life.

My sister, Debbie, and I have been following a series of broadcasts on Focus on the Family talking about families coping with a child with cancer. It has been confirming to know the feelings I have and do experience are shared by many.

I am so thankful for the 24 hours in a day to live with Karina, Braydin and Torin. The joys in life become more and more simple. the need for things in life diminish, the giggles and cries become music to my ears, the outside distractions of responsibilities become low priority and God's word and unchanging love become the rock/comfort/purpose/hope of life. Hug those you love extra tight today.

Karina is still tearing up the pavement on her bike and reading books!! I am shocked at her ability tackle beginning reading material and crying because I won't give her harder books. Excuse me!! There is the determination that is the backbone of her every thought.

Thank you for the prayers and many concerns regarding her health this past couple of weeks. The road still has bumps and will have more down the road. Our family loves each of you and we draw strength by knowing you care enough to sign the guest book, call and say you are still praying, ask when you see us, hug Karina any chance you get etc.........it all seems like it should be over pretty soon. Feb 8th is Karina's one year anniversary of her diagnosis. She is scheduled to have a spinal tap with chemotherapy, the big guns of chemo through her port and back on steroids for a week on Feb 8th. We are going to make every effort to celebrate someway on that afternoon. Dwight told Karina that she will forever celebrate 2 birthdays now. One on Feb 8th and the other Sept 3 (her real birthday). Her daddy sees great reason to celebrate her life!! Our dear friend Pam Booker called today and wants to bring us dinner on that night we return from the hospital. Pam is a prayer warrior and we are grateful for her and God's timing to meet our need.

I seem to ramble on and on when I intend to be short and concise. Thanks for reading and praying.

Love,

Dana

Monday, January 16, 2006 8:36 PM CST

Isaiah 40:31

"but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

Dear Family and Friends,

Karina has been off all her medication and chemo drugs this week waiting for her blood counts to come back up. She has felt great this week until yesterday. She developed a fever this morning and it went to 102.4 by mid day. We made a trip to our local emergency room as advised by our doctors in the city. Our local pediatrician, Dr. Munitz, met us there and they accessed her port for a clean blood culture, took a urine sample, nose culture, physical exam and chest X-ray. We had done blood work this morning and knew that her counts were up and looking good. When all these tests returned negative, Dr. Munitz felt strongly that her fever is just viral and there was no need for antibiotics. That is great news as the other option would have been 3 days in the hospital.

Karina still has a definite fever and chills. She is not sick or suffering in any other way. She will stay home for a few days until the fever is gone. After that she will be able to take her chemo drugs and get back on track.

I am praying for patience and faith that her body does not allow any cancer cells to come back while off chemotherapy for such a long time.

My hats off to Dr. Munitz for being a faithful and caring pediatrician. He is a man who truly cares about children and Karina. He has 5 beautiful children of his own and took several hours from his holiday today, after a phone call at home from me, to care for Karina from beginning to end.

Thank you for your prayers. We feel stronger because of you all.

Blessings,

Dana

Wednesday, January 11, 2006 8:00 PM CST

Dear Family and Friends,

Thank you so much for the guest book entries recently. I have read each one to Karina and many several times. She needed to hear those heartfelt and special messages to her. She is full of energy this past week and I can't help but think the encouragement from you all has helped tremendously. It is hard to know what a 5 y/o processes but this week she has had to face a few things.

Karina has had some major events in her life since I last wrote. First, we had an appointment in OK City on Monday and her counts were 40 points too low to get back on chemotherapy. So she is off all medication for another week. Her hemoglobin did come up and the doctor was encouraged. We are praying that her numbers rise steadily to get back on treatment next week. We want to keep the cancer away and the chemo drugs are what we are leaning heavily on. Only God can control her precious body and that crazy blood.

On Sunday afternoon we ran into a friend while getting groceries and she informed us that Karina's friend with cancer had died. I have written about this sweet little girl in the past. Her name was Emily and she was 3 y/o. She had a tumor on her kidney that was in stage 4 when discovered. Karina and I had roomed with her and her mom several times and we felt a special connection as we live within 30 miles of each other and the girls really enjoyed playing, coloring and painting together. Emily's mom and I could talk for hours. Emily was the middle child of 3 very much like our family. Karina and I came home with very heavy and sad hearts. Karina and I prayed immediately for Emily's family starting the minute we got in the car at the store. Karina is learning the meaning of prayer and the comfort it brings. She can say a beautiful and meaningful prayer on the spot. Karina is dealing with the death of a young friend at too early of an age. Please pray for the Cassada family.

After returning from the store, we decided to go on a family bike ride. Karina abruptly decided that she wanted her training wheels off. Her daddy took them off and held her down the street one time and off she went. Life has changed for Karina with this new found independence. She is on that bike every extra minute of every day. We were praising God for a happy thing in Karina's sad day.

We will check Karina's blood work again this Monday and hopefully begin chemo again on Tuesday.

Thank you again for your words of encouragement.

Love,

Dana

Tuesday, January 3, 2006 8:19 PM CST

Dear Family and Friends,

Happy New Year!! Our family has had the most relaxing and restful holiday season we can remember. Several things are new with Karina's health.

We made a trip to our local pediatrician last week and he gave her an antibiotic for a sinus infection after consultation with her doctors at the children's hospital. The medicine seems to be helping. Unfortunately, a week ago we had her blood checked and her overall white count number was perfect but her red blood cells were low. Low counts for Karina means below the range acceptable for her diagnosis. We had her blood checked again yesterday (we have blood checks every Monday) and the white count and red count had made a serious nose dive. I spoke with one of her doctors yesterday and he said we need to watch her closely for a fever, decline in energy or overall poor appearance. She is very in need of a blood transfusion but the doctor said we will hold off, if we can, until next Monday when we go to the city for an appointment and also to see if the sinus infection she is fighting may be causing the low blood numbers.

Karina should be feeling extremely tired and overall pretty lousy right now but she doesn't. When someone asks me how she is feeling, I often can't really say. Karina has an amazing way of carrying on with life, full force whether she feels good or not. If you ask her, she most likely will say she feels "good". The only info I can go on is her mood and fussy level. She is an amazing little girl that God chose to have cancer. She shows her mom and dad daily how to be thankful for little things and not to focus on the bad.

Today she shocked me when she said after lunch (typically a tired time) that she was tired, didn't feel good and that no one was praying for her. I was shocked. I told her that many, many people all over the US were praying for her and that I could show her by reading this website guest book. We sat together and scrolled through many messages. She would have sat until midnight listening to the love and support each of you has provided. But most of all, each of you offered your prayers for her and she heard that in your messages. How could I ever thank each of you enough for writing every message and many of you wrote several times? I have not taken the time to reply to each of you as maybe I should have, but please know how much it means to Dwight and me weekly as we read your words. Karina has taught me a lesson that I need to read her those messages more often to let her know that she is prayed for by so many of you. I thank you deeply for your support.

Please pray for Karina to not get a fever this week and for the red and white counts to miraculously rise this week. She is off all of her chemotherapy medicine, again to allow her blood to heal.

Also, I have been wrestling with the thought of giving Karina vitamin supplements. I have inquired with her doctors all of who say, no. She is to have a balanced diet and nothing more as many vitamins can interfere with her chemotherapy. I would never give her something against the doctors wish, but please pray that I can work with the nutritionist at the hospital, that we can find something appropriate for her and we can keep her developing body strong. She needs that body for many years to come!!

Blessing to each of you and thank you for praying for Karina!!

Dana

Monday, December 26, 2005 9:56 PM CST

Lamentations 3:22-26

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "the Lord is my portion; therefore I will wait for him." The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord."

Dear Family and Friends,

Merry Christmas, a day late. We had a wonderful Christmas here at our house. Dwight's parents are here for the holidays and we are enjoying them and beautiful 70 degree weather. We have cleaned out the garage and cleaned up holiday decorations. We have also eaten more cookies than we care to admit. I extend a huge thank you to the many friends who dropped by cookies and goodies for all of us to enjoy. I won't be thanking you next week when I have to exercise the extra pounds away.

December has been a very busy month for the Sones family. I apologize for not updating this site sooner. There is no major news to report other than Karina has had a persistent cough and heavy sinus issues for the past 2 weeks. The symptoms have been around for about 2 1/2 months in a milder form. I am going to take her to the local pediatrician tomorrow to look and listen to her chest etc............Please pray that there is nothing serious. Her body has no resistance to fight the common cold like yours and mine. Ours is gone in a week and hers a month or two. She has to feel miserable but sweet Karina just presses forward with life and her new scooter. Thank you Aunt Debbie and Uncle Chris for the greatest pink Barbie scooter ever.

We have been flooded with Christmas cards this year and many with special notes of encouragement and offering of prayer for Karina. Thank you for your marathon prayer journey with our family. The past few weeks our family has felt a real sense of normalcy. That feeling is slowly coming back to our family but in a tentative way at times. We know that Karina's health is volatile and we are thankful to God daily for another day of life and health for her.

Blessings to you,

Dana

Wednesday, December 7, 2005 9:40 PM CST

Dear family and friends,

Karina, Torin and I made our trek up to Oklahoma City on Monday and Karina's blood was great. Her exam went well. We got medicine for sinus/allergy issues she has been dealing with for months. Karina had her port accessed to have it flushed and she was very brave.

The highlight of our trip was having lunch with one of Karina's nurses. Her name (to us) is Nurse Jennie Cocktail. Her name is Jennie and she is in her mid 20's. When Jennie was 4 she was diagnosed with ovarian cancer. At that young age she underwent chemotherapy and radiation. She is a beautiful young Christian woman who felt God's healing then and chose to become a nurse to care for other kids with cancer. We had a wonderful time visiting and eating at Karina's favorite, The Olive Garden. Thank you Jennie for meeting us for lunch on your day off......you made Karina's week. We love you.

If you are wondering why we call Jennie, Nurse Jennie Cocktail it is because she was Karina's nurse when Karina was first diagnosed. At that time, we were unsure if Karina would swallow pills, so all her medication was given orally. It was a nasty, bitter combination of medicine that Nurse Jennie would mix with the precise amount of orasweet, to better the flavor. Well, to entice Karina to take her medicine, Jennie would come in dancing and shaking this medicine. We called it her special "cocktail" of medicine. That is the story.

I have to brag about the boys. Braydin and Torin are taking Karina's illness and life changes very well. They are super boys and Dwight and I are very proud of them.

Karina is in school and feeling well. She is tired and takes a nap everyday but otherwise carries on as normal. We are hoping to get some snow in the next day or two. That is a big deal in Altus. We are geared up and ready for the white stuff. Dwight's parents arrive on the 21st for the holidays.

Thank you so much for your prayers for Karina and your encouragement for Dwight and me. We feel surrounded by loving, caring friends and family both here in Altus and around the U.S.

Merry Christmas.

Blessings,
Dana

Wednesday, November 23, 2005 9:05 PM CST

Dear Family and Friends,

God really does have a sense of humor!!! Karina had her blood taken on Monday morning to see if her levels were high enough to start her chemotherapy on Tuesday. It has been 4 weeks since her last treatment and we have all been in prayer for her blood to recover enough to get back on schedule. We needed her level # to be greater than 500. It was 3000!!! Oh, me of little faith. God must be looking down at me and shaking his head. We prayed for a little and received a lot.

Karina received 24 hours of chemo, yes, the 32 little pills, all without any nausea. She will take the follow up drug tomorrow (Thanksgiving) and be back on track. We are so excited that this week has been so good for Karina. She does have a bit of a cold and very stuffy nose but who doesn't in southwest OK. Our weather has been a beautiful 60 degrees with clear skies in the day and cool at night.

Our family wants to wish your family a very Happy Thanksgiving!! We have so much to be thankful for!!

"…Let your lives overflow with joy and thanksgiving for all He has done." Colossians 2:7

Blessing on you,

Dana

Tuesday, November 15, 2005 9:52 PM CST

Dear Family and Friends,


Last Friday the kids and I were invited out to a friend’s farm to horse back ride. It was a beautiful day and we had such a wonderful time. Thanks Regina, Jessica and the Dally family for the super fun day. We got home and Karina said she had a very bad and sudden headache. I checked her temperature before giving her Tylenol so we never mask a fever unknowingly and there was the fever. It quickly elevated to 101.5 which is over her limit and we packed the car and headed up to OK city to the children's hospital. The ER was not a good experience but we arrived to our hospital room by 4:30am for a short nights sleep. Karina was on IV antibiotics until Monday and received a blood transfusion on Saturday. We were discharged Monday around lunch time and were home by dinner time.

Dwight was off this weekend as well as Monday for the Veteran's day holiday. God's timing was so perfect and obviously part of His plan. Dwight and the boys came up for the day on Sunday which brightened all of our spirits. See the new photos.

Karina tolerated the "all nighter" in the ER well. She is the most optimistic little girl and somehow finds a way to talk herself into positive thoughts in the middle of despair. She never complains about much of anything through the hospital stays. God has provided our family a peace that only He can provide. Karina has peace in her heart.

The blood Karina received gave her rosy cheeks and healthy red blood cells but did not help her white blood cells a hoot. She is unable to go to school and ballet this week. That makes her sad, bored and missing her friends. The good news is that my parents are arriving on Thursday afternoon for the holiday. We are so excited for their visit.

Karina remains off all her chemotherapy drugs again this week. This is week 3 and it makes me very nervous for her to be off all her medication. After all, this is what is keeping the cancer away. Please pray that her white blood cells come up by next Monday for her to begin her chemo again. The doctors are changing her medication a touch to see if we can prevent the low levels and stalls in her therapy.

Thank you for the supportive journal entries. They mean so much to us.

Love and blessings,
Dana

Wednesday, November 2, 2005 9:51 PM CST

Dear Family and Friends,

Thank you for all your prayers today. Many of you have emailed wishing us your support and we are so thankful. I draw strength from knowing that many of you are praying for Karina.

We made it through another procedure. Karina, Torin and I headed to OK City at 6am. Karina had her spinal tap around 11:30am after a long and hungry wait. The doctors are amazed at the strength of medicine it takes to sedate Karina. Each procedure, the doctors try a new "mix" of drugs looking for the perfect blend. In the past she has had adverse reactions, agitation, combativeness, restlessness, nausea, excessive fatigue etc.........from sedatives. You name it. This time the new mix of drugs worked beautifully. Karina tolerated the procedure well. She got quite sick after, but was able to have her magical anti-nausea medicine (that I brought along) and it allowed her to feel better. Her first groggy words were asking for her brother, Braydin. A few minutes later, she asked for Torin to come and hug her. Torin spent the day with us and he was a super 3y/o. I was proud of him.

We made our trek to the Mecca of ravioli for Karina!!! The Olive Garden. Yes, that is the closest O.G. to our house. A mere 2 1/2 hour drive. After eating and a few hours to transform, Karina seemed back to herself. She really amazes me with her positive outlook and optimism. She verbally talks herself through the recovery period. I need to tape record it sometime and take lessons from her. Interesting psych study that would be. She got that ability from her dad, I think.

Karina's blood counts were just 50 points above the limit to allow her to have chemo today. Praise God. This is not by chance. We feel his presence daily and He knew she needed that chemo today.

Karina will go back on Steroids for 7 days which is just long enough for her to start the every two hour feeding schedule and mood swings like a teenager. Then we are done!! The effects of the vincristine she received today will kick in this week as well. I will keep you posted.

Until next time..........Keep praying for continued remission. We have a couple of special friends with cancer who we pray for. They would love your prayers as well.....Annabel, Emily, Frieda Anne, MaKenzie, Nicole and Brian.

Blessings,

Dana

Wednesday, November 2, 2005 9:25 PM CST

Dear Family and Friends,

Thank you for all your prayers today. Many of you have emailed wishing us your support and we are so thankful. I draw strength from knowing that many of you are praying for Karina.

We made it through another procedure. Karina, Torin and I headed to OK City at 6am. Karina had her spinal tap around 11:30am after a long and hungry wait. The doctors are amazed at the strenght of medicine it takes to sedate Karina. Each procedure, the doctors try a new "mix" of drugs looking for the perfect blend. In the past she has had adverse reactions, agitation, combativeness, restlessness, nausea, excessive fatigue etc.........from sedatives. You name it. This time the new mix of drugs worked beautifully. Karina tolerated the procedure well. she got quite sick after, but was able to have her magical anti-nausea medicine (that I brought along) and it allowed her to feel better. Her first groggy words were asking for her brother, Braydin. A few minutes later, she asked for Torin to come and hug her. torin spent the day with us and he was a super 3y/o. I was proud of him. Many thanks to Elena Briscoe for your help today in every way at the clinic. God answered my prayer today.

We made our trek to the meca of raviolli for Karina!!! the Olive Garden. Yes, that is the closest O.G. to our house. A mere 2 1/2 hour drive. After eating and a few hours to transform herself, Karina seemed back to herself. She really amazes me with her positive outlook and optimisism. She verbally talks herself through the recovery period. I need to tape record it sometime and take lessons from her. Interesting psych study that would be. she got that ability from her dad, I think.

Karina's blood counts were just 50 points above the limit to allow her to have chemo today. Praise God. This is not by chance. We feel his presence daily and He knew she needed that chemo today.

Karina will go back on Steroids for 7 days which is just long enough for her to start the every two hour feeding schedule and mood swings like a teenager. Then we are done!! The effects of the vincristine she received today will kick in this week as well. I will keep you posted.

Until next time..........Keep praying for continued remission. We have a couple of special friends with cancer who we pray for. They would love your prayers as well.....Anabel, Emily, Freida Anne, MaKenzie, Nicole and Brian.

Blessings,

Dana

Tuesday, October 25, 2005 10:55 PM CDT

Dear family and friends,

Deuteronomy 31:8

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

A few more weeks have passed and we are thankful for good blood counts for Karina. She is having chemo today as scheduled and will follow up with more medicine on Thursday. We are very excited to see Karina's white blood counts stay within range to receive her medicine.

Karina is enjoying Kindergarten and doing well. She continues with speech therapy for her articulation two times a week. Ballet is still the highlight of Karina's week.

The kids were on fall break this past Thursday and Friday. I took them to Fort Worth, TX for 4 days along with my good friend Amy and her 2 children. We had a wonderful time sightseeing, eating and shopping.

Please pray for Karina's endurance and strength. she gets tired by mid day and wants to come home before school is over. School only goes until 12:15 pm :) This is the beginning of cold and flu season. Please pray for Karina that she does not get frequent illnesses. It will be very easy for her to catch colds, flu’s etc...........We just want to stay out of the hospital this winter as best we can.

Wed, Nov 2, Karina will have a spinal tap to draw spinal fluid and inject chemotherapy drugs. Also, she will receive a dose of vincristine into her port. This is the drug that has many side effects to include neurological and hair loss. God is caring Karina in the palm of His mighty hands. We know He is watching over her, has a perfect plan for her life and has given us Karina's precious life as a gift. We cherish her.

Thank you for your continued support, love and phone calls. We love and miss you all.

Blessing on you.
Dana

Thursday, October 13, 2005 10:29 PM CDT

Dear Family and Friends,

We have been home from the wedding for a week now and are back in the swing of things. What a wonderful trip we had seeing family and lots of old friends. Karina did not get sick and we truly relaxed. We were able to stay with the Sones for a week, my sister and family for 4 days and my parents the rest of the trip. We came home rejuvinated and feeling "normal". We needed to know we could travel with Karina and feel freedom for the doctors and hospital here. The kids traveled great and it was nice to not have diapers and a stroller to tote along. Thank you to those who encouraged us to go on the trip!!!

Karina's blood counts remained high and she had chemotherapy 2 days ago. Today she took her follow up medication to clear the chemo drug out of her system. She tolerated the medicine well, but I can say she does not feel the greatest. She is tired and a bit sensitive at times which tells me she is not 100%. She has not missed school and that seems to keep her going.

We have her blood checked on the next 2 Mondays and she should be back on schedule now receiving chemo every 2 weeks on Tuesdays. We are not due back to OK City for a hospital visit until Nov 2. that will be a big day with a spinal tap to check her spinal fluid, inject methotrexate and dose of vincristine in her port. that is the drug that makes her hair fall out etc..........We will pray for a little hair loss and no neurological side effects.

We are still loving Altus OK, our church, friends, neighbors and squadron. We are no where close to ready to move on, but the Air Force did tell us today that our next assignment will be in Washington, DC for Dwight to attend school for a year. We will move next July. Our hope is to find another job in DC after school and stay a little longer. We see God's hand in this assignment and will follow closely His desire for our lives. Karina will receive care at Walter Reed Army Medical Center in DC. They have a pediatric oncology group which we visited when we were home last week.

Until next time.............blessing to you.

love,
Dana

Monday, September 26, 2005 8:06 PM CDT

Dear Family and Friends,

Ya hoo!!!! Praise God!!! We are excited today as Karina's blood has risen to the occasion!! Today Dad Sones and I went to Walter Reed Army Medical Center to have Karina's blood work done and the news was great. Her number needs to be over 500 and it was 560. Tomorrow morning we will begin her chemotherapy followed up by the rescue drug on Thursday. she is back on schedule after a 2 week stall.

We decided very late last Tuesday evening to make the flight to VA for the wedding and we are so happy that we did. Karina was a beautiful flower girl and Dwight a handsome best man. The wedding was a special ceremony and the reunion with our families was a time of rejoicing. It was a blessing to be with so many people that we love all at one time. This trip has been therapeutic for me, personally, to be away from home with Karina and know that she is doing normal activities and we are functioning.

Dwight and Braydin took advantage of a rare opportunity and joined my dad on a fishing trip on Long Island, NY with my Uncle Sonny. Day one they caught 21 fish and day two 24 fish. Braydin is having a super time and was happy to throw most of the fish back into the water. Uncle Sonny and Annette are gracious hostesses and I can only imagine the fun they had. We will happily welcome them home tomorrow night with bagels and crumb buns!!! If your mouth is watering, rightly so as mine is too!!

Karina, Torin and I are having fun with Omi, Bubba, Uncle Manfred and Aunt Christiana from Germany. The weather in VA has been mild and humid. We are having a relaxing and wonderful vacation.

Thank you for the recent guest book registries. We feel so blessed by the continued outreach of prayers and love. Thank you so much for loving our family and lifting Karina up to our Mighty Creator. We know He is in control and we thank Him for each day He gives us her life. Dwight and I often glance at each other when the kids are causing a rucus and say how happy we are to have 3 lively kids. Our perspective on the petty things in life are no longer trivial.

God is good..........all the time. This is the title of a song we often sing in church and each time I write it, I am singing it in my heart. Someday, maybe Karina can sing it for you!!!


Blessings,
Dana

Monday, September 19, 2005 9:17 PM CDT

Dear Family and Friends,

My prayer tonight is: "However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me-the task of testifying to the gospel of God's grace." Acts 20:24

Thank you for your prayers. Karina's blood counts took a nosedive last Monday much to everyone’s surprise. She was due to receive more chemotherapy last Wed but instead we were sent home and told to stop all medication to allow the blood to recover. Often times, this is a sign of abnormal cells or possible infection none of which Karina had. God is good........all the time. We went back to the city one week later (today) and her blood did not recover. She still has nearly no white blood cells and we are due to fly to Virginia in 2 days for Dwight's brothers wedding which is this Sat the 24th. Karina is to be a flower girl in the wedding.

We have some tough decisions to make regarding the risks involved to take Karina. Please pray for us as we work through the details and options that God will clearly direct us. Karina's health is of the greatest concern at this point.

We love reading the guest book and are so thankful for the encouraging messages. Please know that we read and reread all of them and have not replied to each of you but hope to one day.

Thank you for praying. Please pray for Karina's blood to recover so she can get back on all her medication including chemotherapy. It is scary knowing there is nothing warding off those cancer cells without medicine.

I will write again soon.

Blessing,
Dana

Monday, September 5, 2005 9:11 PM CDT

Dear Family and Friends,


Hello to all of you!!! It has been about 3 weeks since I last wrote. We are feeling great about Karina's home chemotherapy treatments. We go to the city for appointments every other week and Karina continues to receive good reports. We have completed 2 home divided dose methotrexate treatments and both went smoothly. Karina's blood continues to remain low which means her immune system is suppressed. This is part of the treatment and considered "normal". She is nauseous for about a week after the chemo. We combat that with a miracle drug called Zofran. It is a very expensive drug that has allowed Karina to function normally when she would otherwise be very sick and we are so thankful for our insurance coverage for Karina to have it.

September 3 we celebrated Karina's life. Karina turned 5 and we had a wonderful Birthday party with all of her friends at a gymnastics academy her in town. There was music, games, cake, ice cream, balloons, goody bags and lots of running around. Six months ago we were not sure what Karina's birthday would be like or if she would have many more birthdays. Today we are praising God for the gift of her life and each day He has chosen to share her with us. The day was super!!

Karina is in Kindergarten and doing well. She loves going to school and her teacher Mrs. King. She prefers to be dropped off at the curb and to go into the school alone. I am supposed to bring her in and sign her in, but instead I knock on the window of her classroom and wave at the teacher so she knows I really did bring her to school. She is very independent. She is back in Ballet and loving it. This past weekend she went to a cheerleading camp with about 50 other little girls where they learned a routine that they will perform at the halftime show at the high school football game. She is very excited about this and practices her “moves” in the family room.

Karina continues to need your prayers for her health. She is a tough little girl and I feel sometimes she doesn't want to say if she doesn't feel well. She takes a nap everyday and will tell her friends that she does so because it is good for her body. We want to teach her to listen to her body and tell us when she doesn't feel well. It is tough for a 5 y/o to know when they are nauseous or hungry or plain old tired. This sickness is maturing Karina beyond her years. There is a balance, as parents that we want to achieve in teaching Karina how to take care of her body without the pressure or responsibility of knowing that she has cancer. We seek God's wisdom daily and appreciate your prayers.

The past 3 weeks we have felt a gigantic step closer to normal as a family. In two weeks we leave for Virginia for Dwight's brothers wedding. Karina will be a flower girl in the wedding. We are very excited and at the same time a touch nervous to travel so far from her doctors. The doctors and nurses we know are security blankets to us. Our prayer is that Karina does not get sick. My parents are checking into a special mask for her to wear on the airplane.

Thank you for the written messages, emails, phone calls, prayers and support.

Blessings,

Dana

Tuesday, August 16, 2005 9:46 PM CDT

Dear Family and Friends,


Tomorrow is Karina's first day of Kindergarten!!! She is very excited to be back in school. She will be attending a small private school with 11 children in her class. He teacher will be Mrs. King who Braydin had last year. She is an amazing teacher who ties teaching curriculum and God's love together. Karina is very excited be attending school. There are many germs at school and we pray for protection over Karina to remain healthy. The next 2 weeks are going to be a real test as her blood counts are so low.

Karina finished her last scheduled inpatient chemotherapy 3 weeks ago and today she began her first home chemotherapy schedule. Praise God for allowing us to travel through phase two with no unplanned hospital visits, minimal sickness and many blessings along the way.

We are now officially in phase 3, maintenance phase. Karina was off all medication for the past week as her blood count was too low. It rose just 7 points over the minimum number to begin this next phase. God is good..........all the time. Karina is following a regimen called divided dose methotrexate and is given oral chemotherapy drugs every 2 weeks. Karina takes 8 small pills every 6 hours for a 24 hour period. Yes, that is 32 pills in one day. They are small and easily swallowed. Karina learned early on that swallowing pills beats the taste of oral steroids any day. Karina is still taking her daily chemo drug called 6 MP and Bactrim 3 days a week. Those will continue for the next 2 1/2 years. The day after her chemo meds are done she takes a drug called Leucorvin which rescues healthy cells.

As I write, Karina has taken 3 of the 4 doses and has not had any nausea. I will wake her at 2 am for the last dose.

Thank you all for your continued prayers. This is a long journey as we just entered week 25 of a 130 week protocol. We love reading the journal entries.

We ask that you all also include two specials girls in your prayers. Emily we spoke of in our last journal. She has been in the hospital for the past 10 days with a fever and is hoping to be home today only to begin her next round of chemo next week. The strong drugs she is now taking are taking their toll on her sweet 3 y/o body. Also, pray for Freda Anne. She was our first room mate back in March. She is 18 y/o, lives 5 hours from the hospital and has been in the hospital about 90 % of the time since we have known her. She has 4 more chemotherapy treatments to go and has had many challenges each step of the way.

Braydin and Torin also begin school tomorrow. Braydin, 1st grade and Torin 3 y/o preschool. We wish all of our friends a great first day of school as well!!

Blessings,

Dana

Tuesday, August 2, 2005 8:27 AM CDT

Dear Family and Friends,

We are home from our 6th chemotherapy visit. This was the last scheduled chemo visit which now allows us to move into the next phase of treatment. Karina was a little more anxious for this visit as she knew it was her last. She did great and we celebrated when we got home.

As we drove into the driveway, the boys had made a banner and posted it on the garage door. Karina was so excited to see the warm welcome only to be followed by 3 packages waiting for her to open inside. Family and friends had sent gifts as part of her celebration. We had a great day and continue to pray for Karina's continued remission and good health.

After arriving to our room at the hospital we were told that we would be having a roommate. Not just any roommate, but a 3 year old little girl that we roomed with during our last visit. Her name is Emily and she lives about 30 miles from Altus. Karina has really enjoyed her company as they paint, play, and color together. Emily's dad had not so good news. Her cancer is back before they could finish her first series of chemo. They were trying more aggressive forms of chemo and expected Emily to be quite sick. Praise God that she was not sick 3 days later when we left but had only pain. We are praying diligently at our house for Emily and her family. Her family knows the Lord and trusts Him for healing and strength.

Karina is now moving on to the 3rd phase of treatment. The plan is for all of Karina's chemo to be given orally at home. In 3 weeks we will begin 24 hours (4 doses) of methotrexate (the same drug she has been receiving) at home. She will have weekly blood draws at first. Every 6 weeks she will have her port flushed at the hospital in the city. Then every 3 months she will go back on steroids for one week, get a dose of the other chemo drug (that makes her loose her hair), and have a spinal tap to check her spinal fluid for cancer cells and inject chemo medicine into her fluid. She has been having the spinal tap procedure every 3 weeks so this will be a great rest for her body. We are excited to enter this new phase but do so with a bit of anxiety as we expect her body to respond with less chemo and remain in remission. Please pray for her body to remain cancer free and for God to protect her.

The boys are doing great and our house is preparing for school to start. We begin Aug 18th. Braydin will be going into 1st grade, Karina in to Kindergarten and Torin to preschool. They are growing up, maturing and learning the love of Jesus daily.

Dwight remains busy at work. He recently turned the big 40 and took the surprise party well. He competed in a triathlon last week and finished 3rd. Fitness remains a hobby and stress release for him. His job in command is hard work but very rewarding.

Thank you for your support, prayers, cards and phone calls. We draw great strength through our Lord Jesus.

Sincerely,

Dana

Friday, July 22, 2005 10:09 PM CDT

Dear Family and Friends,

I thought I would update you all on Karina's progress. She is doing great. She had a week of fatigue and a bit of nausea but nothing we could not handle. Her AGC level which is a calculation of white blood cells went from 540 last week to 1150 this week which is great news. This number drops 7-10 days after chemotherapy and then rises. she has been over 3000 in the past. She will be ready for her 6th and final inpatient chemotherapy next week. Karina nad I will head to OK City next Tuesday until Friday. We are very excited to be nearing the end of the second phase of treatment. My dear friend and neighbor, Amy, will watch the boys for 2 days and our favorite babysitter, Kelsey, will watch the boys the last 2 days. Please pray that the boys will be on their best behavior and adjust well.

What comes next? The third phase of treatment is called the maintenance phase appropriately so because it continues chemotherapy but on a different level. Karina will take oral chemotherapy drugs at home with frequent blood tests. We will learn more next week and are eager to begin this phase as it lasts for the next 2 1/2 years.

I will write next week after treatment to let you know how things went. Thank you for praying for Karina and please pray that her treatment goes smoothly with minimal pain and discomfort. she is a strong little girl and powered by God!!!

Love,
Dana


Romans 5:1-4
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spitit, whom he has given us."

Friday, July 8, 2005 3:16 PM CDT

Dear Family and Frieds,

Just a quick update to let you know we have been in the hospital this week receiving treatment. Karina's blood increased just above the required level on Tuesday to receive chemotherapy. We came to the city as a family this time since Dwight was on leave all week. Karina and I came to the hospital on Wednesday morning and are hoping to leave this evening. Dwight and the boys came for a visit each day inbetween their fishing trips and activities. I have to give Dwight a big pat on the back as his job has been tougher this week than mine. Keeping two boys busy all day in a city with 100 degree weather can be a challenge. He survived and may need a vacation when we get home.

Karina has just one more inpatient treatment to go before we enter the 3rd phase of treatment. She is really excited about this and so are we. We plan on taking a family vacation to VA. in Sept for Dwight's brother's wedding. We are very excited for Bruce's engagement to Laurie and anxious to see the extended family at the wedding celebrations.

Our computer remains in the shop and we look forward to receiving it back soon. Take care and I will update the photos real soon.

Thank you for your prayers.
love,
Dana

Monday, June 27, 2005 10:59 PM CDT

Dear Family and Friends,

We are STILL in Altus just like the last journal entry. Karina had her blood work done today (Monday) and her count is WAY down. The magical number should be over 1000 and is typically around 3000 when she begins chemotherapy. Today the count was 168 so this means we stop all medication, wait for her blood to recouperate and pray that she does not develop a fever. We are so thankful for the medical technology to tell us when her body is ready for treatment. Thank you to our sweet babysitter, Denia, who waits with us patiently for the weeks schedule and is flexible. She is a blessing to our family and we are grateful for her availability.

Karina is doing very well. She is an amazing little girl. God has given her a tenacity that I can not comprehend. She runs and plays, takes short naps as to not miss anything and carries on as a healthy child. Please pray for protection for her body and blood. We will monitor her exposure to public places, increase her sleep and keep on a healthy diet. As parents, we constantly ask ourselves should we or shouldn't we do this or go here or there not knowing just what is a healthy place for Karina. Please continue to pray for Karina and the two upcoming treatments she faces and our wisdom as parents to do what is best for Karina.

We will have Karina's blood checked again on Thursday with admission next Tuesday after the holiday weekend. Dwight is on leave from work next week and we hope to head to the city together for a portion of Karina's treatment.

God is good.............all the time. Our family is doing well and we thank you for your faithful prayers.

Love,
Dana

Saturday, June 25, 2005 11:57 AM CDT

Dear Family and friends,

Hello. We are still here in Oklahoma. We went on vacation last week and had a wonderful time being together and having fun. We came home to a dead computer that was struck by lightning while we were gone. So.........it is in the shop for the next few weeks. I at my neighbors house borrowing her computer and will try to keep the journal updated.

Karina had more chemotherapy for the last two Wed. She tolerated it well and so did her hair. It is thinning but remains intack for the time being. She is a trooper as we are counting down the last 2 inpatient chemos. We are do to have her blood checked on Monday and she should be back in the hospital next Wed to Friday. God knows just when her body is prepared for the treatment and we will follow His timing. She is anxious to be done with treatment and so are we.

The kids are enjoying the backyard swimming daily to stay cool in the Altus heat. Everyone is healthy and we are relaxing this summer as a family. Dwight does not get to relax quite as much as the rest of us.

We hope you all are doing well and having a great summer. We all love to read the journal entries. Thank you for your love and support and most of all prayers. This is a long journey we are on and we draw strength as you walk along with us.


Blessing to you all.
Love,
Dana

Saturday, June 11, 2005 11:02 PM CDT

Dear family and friends,

Chemo #4 is over and we are so thankful for another good week in the hospital. Karina did a great job and has this amazing way of remaining positive and optimistic about life. She never complains about being in the hospital or wanting to go home. She manages to find good and fun in situation presented to her. We feel so blessed to have her as our daughter.

Each visit we learn to be thankful for what God has given us as a family and how He also provides grace and love see us through tough times. We are finding it a privilege to serve a might God who we can look to every second of the day.


We met a sweet family this visit. Karina's roommate was a pretty little girl named Annabelle. She is 8 years old and being treated for non-Hodgkin’s lymphoma. She did not feel well during her chemo therapy this week but managed to be very sweet to Karina giving her a hat, bubbles and writing tablet. Annabelle’s family is different than many of the families we have met. Last December their 3 year old son died of cancer (neuroblastoma) and just 4 months later, Annabelle was diagnosed with cancer also. This family is bearing more than I can comprehend. Please pray for them that they feel God's love and comfort.

A few months ago, my sister Debbie, asked me if I could send her a recent photo of Karina for her father in law. Chris' dad had decided to run a marathon for the Leukemia and Lymphoma Society's Team in Training in honor of Karina. He personally raised money and flew from Virginia to California to run the race. He printed her photo on his shirt that he wore when he ran. Thomas Bruck has never met Karina but thanks to him and many others, money is being raised to find cures and better treatments for kids with cancer. Thank you so much, Thomas, for touching our family.

Karina goes back to the hospital the next 2 Wednesday's for more chemo injected through her port. It is quick but strong. This is the medicine that makes her hair fall out. She still has hair and we are mentally preparing for the day we thought would come long ago. God knows just what we can handle. Please pray that Karina accepts this new look with her sweet spirit and great optimism.

We are taking some vacation time this next week and heading to Dallas, TX after Karina's appointment. We are praying she feels strong and that we can enjoy some much needed family time.

Dwight continues to work very long hours. The boys are doing great and rolling with the punches. God provided a wonderful babysitter for us this week and we are so thankful for Denia. The boys loved her and we felt confident knowing she was watching them. Thank you, Denia.


My parents were here for nearly 3 weeks and were such a great help in every way. WE love them being here and appreciated their flexibility to extend their stay. When Karina and I arrived home for the city the house and closets had been cleaned. I was thrilled!!! Thank you so much Mom and Dad for loving us just the way we are and giving of yourselves in so many ways.

Love,
Dana

Friday, June 3, 2005 10:01 PM CDT

Dear Family and Friends,

We are home after a week of learning to be flexible. Karina was due to have chemotherapy this week but when we arrived in the city for treatment, her blood count came back too low. They sent us home for a week. Her blood had been down last week and was expected to rise before her treatment, but it did not. This reminded us to be flexible during setbacks and know that God's timing is perfect. Only He knows that her body was not ready for more chemotherapy and we feel blessed to know that she has an extra week to allow her blood to recover. Chemotherapy wipes out the good and bad cells in the blood and her body may take more time in the future to heal between treatments.

Since my mom and dad, myself and the kids were all in the city we decided to make the best of our time and enjoy ourselves. My parents were able to see the OK. City Murray Federal Building bombing site, we ate at the Olive Garden (a real treat for those of us who live in Altus), went to the zoo and the Omniplex and science center. We came home the next day.

Karina is in great spirits and doing well. We are very cautious of exposure to germs and watching carefully for a fever to develop as she has no immune system right now. The tough part of the schedule change is the babysitter arrangements I had made for the rest of the summer for the boys. We are tapping into our resources this weekend and working out other arrangements for the boys.

Karina received a beautiful hand made quilt today from a family we have never met, but who are praying for Karina. I cry at the very thought of those who are praying for our sweet Karina who have never met her. They are obedient to God's word and our family is touched by the kindness to take even 5 minutes of their day to pray. God's working in our lives and reminding us of His faithfulness to us. On this beautiful quilt is Psalm 23.

The Lord is my shepherd; I shall not be in want,
He makes me lie down in green pastures, he leads me beside quiet waters,
He restores my soul.
He guides me in paths of righteousness for his name's sake.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.
Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.

As life is challenging us right now, we are looking directly upward for strength. This verse is beautiful as is the quilt. After Karina opened the quilt she immediately went to the sofa and covered up with it. She then asked to sleep with it for her nap and bed tonight. When I saw it covering her body, I felt it was a gift from above protecting her sick body. Thank you to the kind family in Arizona whose timing was heaven sent.

We ask for extra prayer for Karina that she does not get sick this weekend, her blood recuperates, she is prepared for chemotherapy next week and the babysitting arrangements work out next week.

Love,
Dana

Saturday, May 28, 2005 7:33 PM CDT

Dear Family and Friends,

This was a very special week for the Sones family. As I mentioned in my last journal, Karina had her ballet recital this week. It was so special for our family to see Karina perform with her ballet class in her canary yellow costume. A few months ago, we never thought we would see her rejoin her group and be able to perform. She had a great time and we all could tell by the large smile on her face. She did a wonderful job and we were so proud of her.

I left that evening, got in the car and said to Dwight, now you know why I love Altus, OK. He shook his head in agreement. This evening really started about a month ago when Ms. Gabrielle, Karina's ballet instructor, stopped me at school one day to say she had a wonderful idea. She had been brainstorming for weeks to find a way to honor Karina on the evening of the ballet recital. She asked if Karina and I would speak on behalf of families of children with cancer. Following our talk we could take a monetary collection to give to the families in the southwest part of Oklahoma to provide support for the travel, meal, lodging, prescription etc....expenses. I nervously said I would be honored to speak. I spoke on Tuesday and Thursday evening.
I borrowed small baskets from our church and we lined them up each row in the auditorium. The first night we collected a whopping $1,514.00. I was emotionally speechless. The second night we collected $1,090.00 for a grand total of $2604.00. Altus is a small town with great big hearts for their community. As always, our family’s prayer is that we will be a witness of God's love for His children and our steadfast faith in Him. Our strength and attitude is from Him, not ourselves. My dear friend Lisa Ruse said it so perfectly when describing Karina. She said Karina has "faith to move mountains and courage to overcome".

Thank you for praying for Karina and loving her and our family from around the world. We are grateful for your encouragement and support.

Blessing,

Dana

Thursday, May 26, 2005 8:03 AM CDT

DanaDear Family and Friends,



I thought I would write a short update on Karina and insert some new photos. I want to thank you all for your prayers for Karina. We are blessed beyond words by the messages sent, phone calls, cards and spoken words telling us you are praying for Karina. We never thought so many people would care about our sweet Karina.



Karina has had a wonderful week. She has felt strong and is looking and acting so much like the old Karina. My parents arrived last night and the kids are blissfully happy. This week Karina has a ballet recital. She has been practicing all year for this big night. As I sat and watched her practice on the stage at the city auditorium, I was so joyful, I cried. So did my dear friends who have walked this journey with us. Karina smiled the whole way through the practice. Karina wakes up so happty each morning and I often wonder what is in her sweet heart and mind. She could teach us all a few things.



I will write again later this week.



Love,

Dana

Saturday, May 14, 2005 9:43 PM CDT

Dear Family and Friends,

Karina just finished her 3rd of 6 chemotherapy visits and I wanted to write and let you all know how she is doing. In the future I will write an update more often now that school is ending. Our schedule has been so hectic that I have only written after each treatment.

For Mother's Day I received a digital camera and I will update photos often. What a fun toy to have. This writing I am having trouble deciding which photos post on the site.

Karina has remained very healthy with no fevers which would require extra hospital stays. She has played like any other 4 1/2 year old would, running, biking, jumping, dress up, dolls, crafts etc...... We continue to encourage her to keep her hands washed, play outside with friends and avoid close contact with groups of kids.

I had a parent/teacher conference with Karina's preschool teacher to discuss Karina's evaluation results regarding her readiness for Kindergarten. She has been out of preschool since Feb but tested above average and appropriate for Kindergarten. Dwight and I will discuss this decision with her doctors to learn more about her health and immune system as it gets closer to school starting.

Karina and I went to the hospital this past Monday afternoon. We go straight to the hospital for her preadmission exam, blood work, and paperwork. Then we head to the stores to shop. Karina loves this time with mommy as we always manage to find something for Karina. Mommy finds a few things too. Then Karina chooses the restaurant to eat which is usually the Olive Garden. We then go to the hotel to swim, watch TV and go to bed. It is a fun evening for us as the time together has become a special tradition in which I hope she remembers years from now.
When we got to the city, there was a mix up in our hotel reservation and we had to find a different hotel. She wanted to be sure it had a pool which it did. We went to check in and I was signing the form and the receptionist casually mentioned that the pool was closed for repair. Karina was crushed. I explained to her that God had a purpose for the pool being closed because he was protecting her from that water. Karina is only allowed to swim in chlorinated pools...........with risk. I told her we would swim in the tub and go get some colored tablets that turn the water different colors. She agreed and decided the tub would be just fine. That is an example of Karina's positive and flexible attitude these days.

Karina had another spinal tap that was clear of any cancer cells and chemotherapy injected into the spinal fluid. Miraculously, she does not complain of back pain after the procedure. Her chemotherapy was started and completed with no nausea or vomiting. God has protected Karina from many bad side effects. We are praising Him.

Karina and I received a roommate at 4:30 am the second night. The 5 y/o girl had fallen off a pool ladder and broken her elbow in 3 places. The hospital had nowhere to put her except on the hematology/oncology unit. In the morning, Karina said "we need to pray for her and her elbow". Karina still sees others needs above her own.

Karina is losing her hair and we are researching buying a wig for her. When we talk about it, she just comments that her hair will grow back if it all falls out. If only her mommy could see it that simply.

During a quiet time at the hospital I read a devotional that was written by an artist painting the hillsides in Italy. She loved painting the grape vines that were very old and had withstood much weather because their vines were more knotted, twisted, bent and intricate, the grapes bigger, heavier and more bountiful. The weather had forced their shapes. It other vineyards were young plants that had not had the years of exposure to weather and they were not interesting at all to paint. She compared our lives as Christian's in God's kingdom as that it is in nature. From the wind and rain of adversity comes growth and a beautiful life worth painting. Like the old vines, the life shaken apart and not destroyed is the life that becomes strong and courageous. God has our lives in His hands and we trust Him every day for guidance and strength.

Braydin turned 6 last weekend and had a big birthday party. This weekend he mastered riding a 2 wheel bike. He now rides everywhere and with great confidence. Torin is just plain cute. He melts our hearts and is speaking very well.

Thank you for the prayers, phone calls, cards and gifts. We have strength to get through the day knowing you all are praying for Karina and our family. We are blessed.

Love,
Dana

Monday, April 25, 2005 10:22 PM CDT

Dear family and friends,

Thank you so much for your prayers for Karina and our family. You have journeyed with us this far and we are so thankful for the calls, cards, gifts and endless support. We feel love and prayer coming at us from around every corner. There is not a day that goes by that we are not stopped at the store, on the soccer field, a knock at the front door, a message on the recorder, words of encouragement on the website or a letter in the mailbox that says you all love and care for Karina the way God loves us. We draw strength from each of you. Thank you.

Karina and I were in the city from Monday to Thursday evening last week. It takes a day or two to readjust and catch up on the time we missed. God blessed us with a wonderful babysitter to take care of the boys from morning until evening when Dwight got home. She worked out so perfectly and I had no worries while we were gone.

Karina had a physical exam and blood work to give the okay for chemo the next day. She passed with flying colors and we then went to Target (the closest one to our house), and to the Olive Garden for dinner (also the closest one to our house). Big treat for her and I stay in a hotel that evening. We picked up a dear friend Kittie Huey to join us for our few hours in the big city. We had a wonderful time together.

The next morning Karina was admitted and had a spinal tap and chemo starting at 2:30 that afternoon. She received 24 hours of chemo then 2 doses of medicine to clear the chemo drugs out of her system. After a blood check, we expected to be released by Thursday evening.

This trip taught Karina and I many things. God allowed Karina and I to see that she is blessed with a curable form of cancer. We have now had 2 different roommates who have more serious forms of cancer with longer and more invasive treatments. We are praying for these two young ladies. God taught us to be thankful.

Karina was able to visit our friend Kittie's daughter who has been in the hospital next to the Children's hospital for over a month. While Karina was in the hospital Kittie's daughter took a turn for the worse. With God's healing she is now doing better. Driving home from the hospital, we were admiring the beauty of SW Oklahoma, the farm land, the large mountains, the sunset as the evening was perfect and Karina said we needed to pray for Kittie's daughter and the children who were still in the hospital. She prayed the sweetest prayer. She never thought to pray for herself. I told Karina that she has the love of Jesus in her heart. I was so proud of her and her loving spirit.

As I anticipated our discharge on Thursday evening, I packed our suitcases and made a trip to the car to load up. The parking garage is a very long walk from the patient’s rooms and I remember thinking how happy I was to be leaving for home very soon. I went back to sign the papers and grab the last pillow, "Biscuit" the lion and Karina. The nurse gave us the okay to leave and we held hands all the way to the parking garage. The freedom I felt on that perfect spring evening was overwhelming to me as we thanked God for giving Karina the energy to make that long walk after receiving chemo. Anyone passing by would never guess what this beautiful, strong little girl just endured. Karina is the light in darkness fueled by Jesus.

God Bless,

Dana

Friday, April 15, 2005 9:45 PM CDT

Dear Family and Friends,

It has been a while since I have updated the website and I am so happy to report because we are busy being "normal" again. Karina is running, biking, swinging and playing with her friends. It is a beautiful sight.

Karina tolerated the last methotrexate treatment very well and as expected. There was a chance that she would have side effects 7-10 days after treatment. She did not have any and we are giving God the glory for sparing her any pain or discomfort. Her blood counts did go down low as expected which meant that she was a great risk for infection, mostly bacterial. We kept her in and away from public places as best we could until it recovered this past week.

Karina had doctor visits Tuesday April 5th and 12th. She received a dose of the other chemotherapy drug at each of these visits. This drug is the one responsible for hair loss. The nurse said this would probably be the last straw. So far so good as you can see in the photos taken just yesterday. We know the reality may be a beautiful bald girl for summer...........we will wait and see what God has in store.

Karina had a wonderful treat riding Bandit the horse 2 weekends ago and is looking forward to another ride this weekend.

As you can see in the current photos, she was chosen to be "a pilot for a day" which was provide through the C-17 squadron here on base. Our name was entered by a family we have not met but have heard many wonderful things about. Their son is in the first grade and is a leukemia survivor. He had his special day some time ago and thought Karina would enjoy it. Karina was thrilled to have the opportunity to go up the Air Traffic Control Tower and walk on the cat walk outside, see a C-17 video, go in a C-17 and stand in the back while they opened the back hatch, pretend fly the plane, receive her own real wings and a certificate and have lunch with the commander and his wife. What a special day we had and we are grateful Karina had this once in a lifetime opportunity.

Karina and I are preparing for her next chemotherapy treatment next week. We will leave at noon on Monday for the city until late Thursday evening. Monday she will have a physical exam, blood work and admissions paperwork. Tuesday she begins her day with yet another spinal tap followed by 24 hours of chemotherapy. After the chemotherapy she will receive the medication to help clear the drug. Please pray that Karina will continue to understand the importance of drinking lots of liquid to speed up this process. If she can cooperate just like before, she is less likely to have the side effects.

God continues to take us along with baby steps, day by day. He continues to give us strength for tomorrow. Thank you so much for your faithful prayers. We are so encouraged by each expression of love toward our family. Each person that tells me they are praying for Karina gives me the hope to make it through another day. We have placed our Karina in God's hands. What a perfect place to be.

Dana

Sunday, April 3, 2005 10:18 PM CDT

Dear family and friends,

We continue to be blessed with Dwight's mom and dad here to help us with the details of running a house, having 3 young children, Dwight in Texas on a trip and many other details. Dad Sones, Karina and me went to the hospital together and he was wonderful company and a great help.

I wanted to give you all an update on our visit to the hospital. We were admitted on Tuesday morning and Karina received a spinal tap to draw cerebral spinal fluid and inject chemotherapy drugs into her fluid. The drawn fluid came back with no cancer cells which was wonderful news. This is a place that cancer cells in children with Leukemia can hide. Karina has not shown any cancer there ever. We are very excited about that.

After Karina recovered from the spinal tap, she was hooked up via her port (which is a catheter in her collar bone area) and the methotrexate was started. It ran for 24 hours along with fluids and Karina tolerated the treatment well. By Wednesday night she was able to go to the Aikman's End Zone which is a lovely facility in the hospital that was donated by the football player, Troy Aikman. The kids can find many things to do in this beautiful high tech facility. Karina enjoyed seeing the dogs do their tricks and then pet them. That was for sure the highlight of our stay.

On Thursday morning Karina was given another medicine orally to help clear the methotrexate from her blood. The medicine is given every 6 hours with 3 doses provided. Karina had just 2 of the doses and was at a low enough level to come home. We arrived home late Thursday evening and feeling blessed by God's provision. Karina was a trooper and each time we go to the hospital we seem to have an opportunity to share our faith either with another patient, a nurse or doctor. God's love for Karina is so evident and we can't help by spill our guts to all we meet about how He is watching over Karina and answering our prayers. He provides comfort even in the worst circumstances.

Each procedure Karina has had (which is a lot) being spinal taps or bone marrow biopsy’s, I stay with her while she is falling asleep and then choose to leave for the procedure which is relatively quick. When it is over I reenter the room to be there when she wakes up. It has worked each time except this time. Karina just would not fall asleep and the doctor decided to proceed on. I could not leave her so I was present for the procedure.

Our favorite 2 things to do during procedures are to place "biscuit" her very soft lion under her head for a pillow and to sing her to sleep with all our favorite Bible songs. We pray together for God to protect Karina and help her to be big and strong. "Biscuit" the lion is a special gift from our good friends Gene and Cathy Carter. Their two special kids helped select this lion because they knew it meant courage and they knew Karina would need a lot of courage to make it through all her treatment. Cathy was one of the first friends to drive all the way to the city to visit Karina and me and when she left the room that day she said, "Dana, you can do this, you can do it" referring to the long road of treatment we faced. God has provided us with amazing friends that are faithfully supporting us. We are so thankful for each of you who are praying for us. We feel the power of prayer as God has comforted us and made his presence know to us daily. We have faith that God has a plan for Karina and we pray she is a witness for Him and we all know that she will have a powerful testimony one day.

Until next time.........

Dana

Monday, March 28, 2005 10:11 PM CST

Dear Family and Friends,

You all must be praying very hard. God has heard our prayers.

We got a great phone call today around 3:30 pm and the chemotherapy medicine for Karina is at the hospital. This is a day earlier than expected. They would like us at the hospital at 7:30 am tomorrow, Tuesday. Dwight's dad, myself and Karina will go up to the hospital and stay until Thursday evening.

We ask you to continue to pray for Karina as she has lots of questions. She is a strong little girl and we pray that she has no side effects from the medication and that the spinal tap goes perfectly in the morning. Every 3 weeks she will receive a spinal tap to check for hiding cancer cells and to inject methotrexate into the cerebral spinal fluid to kill any cells there or on their way there.

From there she will have 24 hours of chemo and then a medication to clear her system of the medication. When her blood reaches a certain level we will be able to come home.

Thank you for your prayers for our family. We feel embraced by you and covered in God's blanket of assurance that He is with us.

Love,
Dana

Friday, March 25, 2005 9:17 PM CST

Dear family and friends,

I wanted to send you an update on Karina's hospital visit and medication shortage issue. Yesterday we went to Oklahoma City to the Children's hospital clinic for blood work and physical exam. Karina's blood work was good and all levels were in normal limits. Her physical exam also showed no enlarged spleen and no enlarged lymph nodes in the neck and groin area. This said that she was ready to be admitted to begin her Chemotherapy the next day.

Unfortunately, the hospital (and the state of Oklahoma) has no supply of the chemo medication she is to receive. The drug is called methotrexate and has been is short supply for the past several months. The suppliers are not able to produce the volume of medication to meet the demand.

Karina will be given the medication when it is available. The hospital expects to receive a shipment the middle of next week. We will wait patiently for a phone call to tell us when to come in. We ask that you pray for the shipment to come in and that Karina will be able to start therapy next week. God knows best and we are looking at the positive things about this situation. We are enjoying a wonderful Easter weekend with our family and Dwight's mom and dad, Karina feels well despite a urinary tract infection, my back is continuing to heal, and God knows that this weekend Karina was not to have this medication.

We feel calm and at peace as the doctors work hard to obtain the medication for many sick children some of who are in the hospital waiting. Karina is home, playing, running again and Easter egg hunting this weekend. Praise God.

Thank you for praying for us and for each of your genuine concern for our family. There is not a day that goes by that we are not touched in some way by our friends and family. Someone asked me if they could write a letter to someone pleading for the medication to be delivered and even suggested that we buy from another country or off the internet. You all truly care. There is no need to write letters at this point, but thank you so much for the offer.

Have a very Happy Easter!!

Love,

Dana