Bits and Pieces & Luke Update

A fall wreath is in the planning stages.

 

 

     It seems as if I have been busier than usual lately. Since my kids left home, I tend to have one or two things a week to do and pretty much stay on schedule...the past couple of weeks have been hectic and this week will be the same I think. I thought I would do one of those posts that answers a few questions I've been asked recently and I also have a "public service announcement"!

 

     Yesterday, we went to a "Thank You" party that was put on by our little friend Luke's parents. He has continued to have cancer-free, excellent check-ups since the bone marrow transplant and is once again a thriving little boy. Their family is building a beautiful new home and other than frequent check-ups, things are getting back to normal for this wonderful young family.

 

Luke leading the pack at his party yesterday.

 

     I have been asked how my dad is doing. He is great. In fact, he is on a road trip to my part of the world right now. He was here on his way to Wisconsin weekend before last and will be here for a few days this week. He turned 87 this month, so part of me really worries about him taking a 2000 mile plus trip, but a) he wouldn't listen to me if I told him not to; b) they seem to enjoy themselves and c) if something is going to happen to him, I'd rather have it happen when he is having fun rather than sitting in a rocking chair! I truly think he has more energy than I do. I only hope that I inherited a bit of what he has.

 

     I was told that I needed to update the progress my daughter and I have made with our "new lifestyle" of eating and exercising. We are both doing very well. I reached a place that felt comfortable for me and so I have spent the past few weeks trying to adjust to maintaining the progress I made. I still work out 5 days a week most of the time, I still hate it. I have continued to log in what I eat, even if I have a day where I eat things that aren't good for me. I also still weigh daily. That is what works for me. I am usually up a pound or so after a weekend, but I go right back to it on Monday and so far so good. My daughter continues to lose weight. It is a slow process right now for her because she doesn't have much to lose and she is so busy at work. She is almost at 50 pounds off and is certainly working on her last 10 pound goal. It really has become a way of life for both of us (my husband too). We all 3 feel better, look better and notice now just how awful we feel if we have a high fat or greasy meal. That doesn't mean we don't do it now and then, but we pay for it!

 

     Last week was doctor week for me. I know I'm getting old when I make several appointments at once. I had an eye appointment (new frames-fun), a dentist appointment (no cavities-yay) and an appointment with the dermatologist (this one has the public service announcement). Sometime around Christmas, I noticed I had a spot on my chest that itched. It was a tiny little red spot and I didn't worry about it. When it was still itching in February, I called my dermatologist. I couldn't get in to see her for months, so I saw a nurse practitioner. I spent much of my youth in the sun, so I have a yearly screening and because my dad has had melanoma as well as both other skin cancers, I watch very carefully for anything unusual.

 

     The nurse practitioner said she thought it might be a pre-cancer and she froze the spot. I waited several weeks and it was still itching, although it didn't look like much of anything...just a tiny red spot. I went back in July, again I couldn't see my doctor and the nurse practitioner said it was fine. I knew it wasn't. I thought it was a rash or something. So, I called again and told them I would wait until I could see my doctor to come in and guess what, they got me in. Now, months after the first pre-cancer suggestion, it has had time to become skin cancer. It is a basal cell carcinoma, which isn't all that serious and I'm not freaking out about it at all. However, it looks like nothing. I have always watched for brown spots, changing moles etc. This doesn't look like anything even now except maybe a flat red mosquito bite, I can barely feel it and no one would even notice it, except it itches! I am on a 6 week treatment with a cream and then wait 6 more weeks for a re-check to see if it is gone or if I have to have it cut out.

 

    I am only discussing this because many of my readers probably also have a bit of sun damage, often on our chests. Many of us were in the sun long before SPF 30 existed! If I had listened to the "this is nothing" appointment and not pushed to see my doctor, this would only have gotten worse. As it is, I wasted several months by not getting to see my doctor. So, please, be aware that something very tiny, red and itchy can be skin cancer. I didn't know, now you do!

 

     We were shopping on Saturday and fall has hit the stores. I am going to try to decorate with things I already have this year, with a few small exceptions. Fall is my favorite season, I love the weather and I love the clothes. I only wish the longer daylight hours would last as well. It won't be long before it is time for jeans, sweaters and boots! It is time to savor the long, hot days of summer before they are gone!

 





Luke is Home, And....

 

     I think his mother said it best on her Facebook page...Tonight, we would like to tell Luke's Prayer Warriors and supporters how proud we are of you! All of you have been Amazing! You know how you have been praying for Luke to be cancer free and for those abnormal cells to disappear? Our/Your prayers were answered! Those abnormal cells disappeared! Thank you, God! Luke is cancer free! Thank you, God! Thank you, Prayer Warriors! Luke's doctor called me on our way home to tell us the final results were back from the Pathologist and that everything was Normal. Thank you, God!!!!!!!!!!!!!!!!!!!!!! 

Luke finally having his favorite

lasagna from our local yummy pizza place.

 

     I have several posts that I want to share with you from our recent trip, but they can wait. Nothing is more important than sharing the news of our little friend Luke (read his story here) and his family. So many of you have been supportive, said prayers and followed his story as I have shared it with you. On Monday, 100 days post-transplant, Luke and his mother (and little sister) were able to come home and join his dad and big brother. This family has been through things that most of us can't imagine and it was such a joyous feeling to know that they were finally all together again.

 

     Then, came the big news yesterday...his tests all came back clear and the cancer is gone. His blood type is now that of his donor (isn't that interesting) and while he still can't be around a lot of people and will be taking medication (for life I think), he feels great, his hair is coming back and other than a little puffiness in his face...he looks like the Luke we all knew before he was sick.

 

     This town has been unbelievable in their support of this young family. Strangers have been unbelievable too. This little boy has touched the hearts of many and while this journey is not over and has had terrible moments for the family, I have no doubt that they would tell you that their hearts have been so touched by the generous spirit of others. I also know that they will be the first to give back in many ways.

 

     Please continue to pray for Luke and for his family as they try to find "normal" once again and he continues to become stronger. His family and I thank you so much for your

prayers.

 

The winner of my recent CD Giveaway was Dee Dee from d dzine.

 

New Laptop(s), Windows 8 and a Luke Update

 

     I mentioned in my last post that I was getting used to a new laptop...well, I had to get used to 2 new laptops! I noticed from some comments that I got, that I didn't make it clear that I have had several laptop computers. I actually have been a computer junkie for many years. I almost hate to admit that my first "home computer" was a Commodore Vic 20-circa 1980. You had to plug it into your television and it really couldn't do anything. I could balance my checkbook, but I couldn't print anything. We didn't have the internet (imagine that) or windows...I never really got the hang of it.

 

 

     I moved on to an apple computer that also used a television as a monitor. It was clunky and the screen was in black and white. I used it a little, but couldn't wait to try something new. In the years since, I have had HP, Dell, Compaq and Gateway desk top computers. Some I bought in stores and some I special ordered. I have had HP, Dell and Toshiba laptops. I usually kill a laptop every 2 years...but my Toshiba Satellite actually is still working and I'm past the 2 year mark. It is however, slowing down and the cord has been replaced and taped and ready to be replaced again. So, I decided it was time to get a new laptop. I spend much of my time these days on my iPad, but for blogging I still need a laptop.

 

     Getting a new computer is like buying a new car for me, I hate to buy the same thing or it doesn't feel new. So, last Friday, I purchased a new Gateway laptop. I have purchased most of my laptops at Walmart because it is so easy to return them if they don't work correctly. She was a beauty, red on the outside and a white keyboard. When I turned her on...there was Windows 8 (see the picture above). I spent all afternoon Friday learning how to use Windows 8, adding the things I wanted to the Gateway and removing other things. I noticed that the keyboard was a bit tricky, but I thought I just wasn't used to it. I also noticed that the computer froze a couple of times, but I didn't worry about it. On Saturday morning, when I realized that it was taking twice as long to load pages and I kept getting a notice saying I didn't have a WiFi connection (even though my old laptop was working fine) I realized that I hated the new Gateway. Saturday afternoon I did a reset to take it back to factory settings (it took hours) and at 9:00 pm, I returned it and bought another Toshiba Satellite. I have gone back to a 15" screen (my old one is 17"), it has an 8GB memory and a 750 GB hard drive, which is an upgrade from my old one. It also has Windows 8, which is a big change (more later), and best of all, it works beautifully. The keyboard is comfortable, the speed is great and I am very pleased so far. She isn't as pretty as the Gateway (this one is blue-gray) but I can live with that...it isn't the color I care about anyway.

 

     Windows 8 is the first major change in Windows since about 1995. It is a big change. I like it but many don't. I think the fact that I have an iPhone and iPad is a big help. Windows 8 is app based and for those who don't know what an app is...there will be a big learning curve. I am not afraid to try things on computers, so I just got busy and tried to learn my way around it.  I also went on Youtube and watched a tutorial because I couldn't figure out how to close a page or turn off my computer. With Windows 8, your computer opens to a Start Screen instead of the desktop that we are all familiar with. You can customize your start screen with many different apps. I can read my Kindle, watch my Netflix or check out the weather, email or CNN from the opening page of my computer. I think it is fun and colorful, but I can see why those who aren't as familiar or comfortable with current technology will have a harder time learning how to use it.

 

     So, I have spent since Friday afternoon hours and hours of putting things on a laptop...removing them. Returning a laptop. Putting things on a laptop and getting it the way I want it. I think I am finally where I want to be and can start using it for normal things again. Thank goodness!

 

And now about Luke...

 

 

     Luke celebrating the 50 day, halfway mark to his 100 days living in St. Louis. He gets to come home after 100 days if all goes as planned. He has been doing well for the most part. You can see he is puffy from the steroids, but that will go away. The latest update from his mother this week is,

 

      "Last week Luke's anti-rejection medicine was switched to oral instead of IV. Luke was not a fan of the taste and it was causing his belly to be very upset and he wasn't eating. He couldn't keep down the dose I gave him Sunday night. Yesterday, he had a clinic appointment and they switched him back to the IV form. Luke is feeling better and seems a lot happier. He finally ate a lot of lunch yesterday. Thankfully, he will be finished with this medicine by the end of June. It breaks my heart watching him take all of these medicines. He has been doing this for the past two and a half years. I know he is tired of all of this. Please pray for God to give him extra strength to make it through the next few months. Please keep praying for the abnormal cells to disappear. He will have another bone marrow biopsy on day 100. 41 more days of praying for those cells to disappear. 41 more days until our family is together again :-) Thank you so much for all of your prayers and support! God bless all of you for caring so much about Luke and our family."

 

     I ask you for your continued prayers for this sweet boy and his family. His mom is exhausted, but doesn't complain. I don't know how she does it, but I guess you find strength when you have to.

Strolling the Boardwalk and Exciting Luke News!

     This is the last of the Christmas/Disney posts. I hope I haven't bored you all to death! It has become a Christmas tradition for us to have an early dinner at Disney's Beach Club Resort. They have a wonderful seafood buffet that also has all of the "normal" Christmas items on it. Another reason we love to have our dinner here is that the resort has a beach and a lake, so a walk after dinner is a perfect ending to the day. This year, we noticed that the path of palm trees that leads from the Dolphin Hotel to the Swan Hotel had beautiful lighting. Much to our surprise, Christmas music started playing and the colors of the trees began to "dance" to the music. 

The Dolphin Hotel, is not a Disney Resort, but it connects

 to Disney property. The fountain outside is huge and so pretty. 

     The view of the Disney Boardwalk (which has a hotel, restaurants and shops) from the Beach Club Resort is gorgeous at night. You can walk all the way around the lake.  

They were showing movies on the beach, 

Disney movies of course!

     It was a beautiful Christmas evening. Temperatures were in the 70's, the sky was clear and it was the perfect ending to a perfect day. There are things I miss about being home for Christmas, but mostly I just miss the members of my family that aren't with me. As for the weather...I love it!

     This was my dessert plate from our dinner. I didn't eat every bite, but I ate enough that the walk wasn't just pleasant, it was necessary. The little dish with the caramel on top was Popcorn Panna Cotta. You can't see the custard layer below the caramel. It was amazing. I asked for the recipe and they are supposed to send it to me. They said that they pureed actual popcorn and strained it to flavor the custard. We all tried it because it sounded so strange and we all loved it. As for the rest of the meal...crab legs, shrimp, turkey, mashed potatoes, chowders, salads, standing rib roast and so on. Yes, I always gain weight when I go on vacation! 

     Now for the exciting Luke news. As his parents are saying, God, Luke and the donor are a great team. An important number for Luke is his ANC (absolute neutrophil count) number. The higher the number the better and his has been jumping by leaps and bounds the past week. It reached over 7000 yesterday. This means that the transplant is working and the best news is that if all goes as planned, today he "rings the survivor bell" at the hospital and gets released to the apartment they have rented nearby. He will still have restrictions and risks, he certainly isn't out of the woods, but it all is going very well and we pray that this amazing progress continues. Thank you for your continued prayers. 

This is the Week! Luke Update.

     Many of you have been following along and praying with me for Luke, the young son of our good friends Rick and Jami Johnson. After a recurrence of leukemia, it was decided that Luke would need a bone marrow transplant. An overseas donor was found and over the past few weeks, Luke has been undergoing tests and treatments to prepare him for the transplant. It happens on Saturday! The bone marrow is to arrive around midnight and the process will begin. Above you see Luke in the hospital in St. Louis. The quilt is made of squares created by his kindergarten classmates and sewn with love by one of Jami's  friends. 

     Luke and his family left on Sunday to go to St. Louis, where he and his mom will be living for at least the next 100 days. Luke's dad and his two siblings will be back at home with visits on the weekends as long as no one has so much as a sniffle. What could have been a very difficult trip was made so special by our local and state firefighters, who have really taken an interest in Luke and his story. He had escorts from his house almost all the way as each department came out to show support as he passed through their jurisdiction. There were firemen along the highway, waving and cheering him on. What could have been a very frightening trip for Luke and his family was turned into a very exciting and special memory for this sweet little boy. 

     I can't begin to list all of the ways the community, friends, family and strangers have formed a bond of love around this family. They are blessed with so much support and I have no doubt that when Luke is well, they will pay it forward for the rest of their lives. They are the kind of people who have accepted this situation with such grace that I am in awe of them. Last night, Jami was requesting prayer for the child in the room next to Luke's. She is thinking of others, even though her own world is upside-down. 

     Ultimately, Luke is in God's hands. The next days and weeks are so crucial for him. If you pray, an extra prayer for this sweet child would be appreciated. If you don't, some positive thoughts and good energy would be wonderful too. In all our years of marriage and all of the families and children we have known along our journey, we have never had this kind of medical crisis affect a child we loved. It is so hard to watch his parents worry and to know what things this baby has been through so far, and yet Luke has taught me, my family and this entire community so much about being brave and taking each day one step at a time. 

Go Team Luke!

Oh What A Weekend-Luke Update-Kenny Loggins

 

     It was quite a weekend in our little town. On Saturday morning there was a big event in honor of our friend's son Luke. Luke, for those of you who don't know, is preparing for a bone marrow transplant after his leukemia came back several weeks ago. He is just in kindergarten and he is the bravest little boy I have ever met. Some of his mother's friends decided to organize a 5k run in his honor and raise money for both the family and for children's cancer research. I cannot tell you what a remarkable job they did with this project. The town turned out in mass to support this family. Businesses made donations of food, cash and supplies...kids from the local and neighboring schools showed up to volunteer or run...rivals in their own sports, all working for one cause. There was a children's run and each child got a balloon and they released them all at once. It brought me to tears.

 

Luke, his brother and his mom

     Our local fire department has made Luke and honorary fireman. His picture hangs on the wall with the other firemen. Fire departments from around Illinois and Missouri have sent him hats from their departments...well over 150 different hats. It was only fitting that Luke arrived on the fire engine to cheers from the crowd. It was even more moving to see the firemen, complete in fire gear, walking at the end of the racers on the 5k. Santa was also on the fire truck and a generous sponsor arranged for Fredbird (the St. Louis Cardinal's mascot) to be in attendance all morning. Luke is a big fan and when he is in the hospital in St. Louis, some of the players have come to visit him.

 

     In this time in our world where there is so much sadness, political bickering and hate...this was a town filled with only love on Saturday morning. Some of the runners came from other towns and didn't even know the family, but they wanted to help. The Champaign-Urbana news station sent someone to do a feature about Luke and it was also handled with such love and care. Today, Luke is in St. Louis having tests to see if his numbers are high enough to have the very strong chemo dose he is supposed to get this week to prepare for the transplant. If all goes well, he will be having the transplant in early January. Please continue to pray for this wonderful family and this special little boy. There is a long road ahead for them, but they certainly are not walking it alone.

 

     On a much less serious note, we were very fortunate to see Kenny Loggins in concert at our local Performance Center on Friday night. I grew up listening to Loggins and Messina, and have enjoyed Kenny since he has been a solo act. He was so good. At 64, his voice sounds exactly as it did when he was younger...maybe even better. He had people dancing in the aisles when he sang "I'm Alright" from Caddyshack and I was certainly out of my seat and moving to "Footloose". His Christmas song, "On Christmas Morning" gave me goosebumps. He did 3 encores and I would go see him again in a heartbeat. My only complaint is that my voice is still not back and I couldn't sing along. Click on the links above for a little bit of Kenny!

Luke Update and Other Things

 

     It has been an interesting time around our house. My daughter was home for 9 days! You have no idea what a gift that was for me. She hadn't been home in 18 months and she only gets here once a year. She hadn't experienced Fall since she moved 5 years ago, so that was her only request...she wanted to experience the season. We picked her up in St. Louis and took her along the Great River Road to Alton, Grafton and Elsa. The pictures above and below were taken at Pere Marquette Lodge.

 

     We also took a day and headed to Arthur, IL to Amish Country, where we went to an Amish auction (the handcrafted furniture is stunning), shopped at an Amish grocery store (noodles, homemade butter, fresh bread) and enjoyed being surrounded by all the horse and buggys. It is such a different world and yet not that far away.

 

 

     Her visit home was at the same time as my girlfriend's annual Witch Party, so of course we put on our witche's hats and had a fun luncheon with a coven of witches. Some of these women really go all out with their costumes. We completely took over the dining room at a local restaurant. It was such fun! Even more so with my girl child with me.

 

     We did arts and crafts! I know that you all are aware that I have no talent in that category, but after reading about making swearter pumpkins on StoneGable's blog, I thought we might be able to handle it. I went to Goodwill for sweaters and had them washed and ready. Believe it or not, ours turned out really well (for us). I'm linking to Yvonne's tutorial here. Believe me, if I can do this, you can.

 

     We spoiled ourselves a little bit at a spa. We actually went to Branches twice. My daughter had a facial and manicure while I had a pumpkin pedicure and then a few days later, she had a massage while I had a facial. Everything was wonderful, relaxing and very comfortable. I think a monster has been created as I can't wait to go back. 

 

     She had planned this trip to be home for my birthday, which was last Monday. I kept saying that between my trip to Michigan and then having my kiddo home for so many days, I simply didn't need a birthday this year. Well, it is a good thing that I felt that way, because Sunday night I had food poisoning from a local restaurant lunch. I have seriously never been that sick in my life. So, my daughter spent her last day home bringing me ice chips, rubbing my neck and making jello. I couldn't stand without getting dizzy until Wednesday and it was Thursday before I got dressed. I lost an entire week...Happy Birthday to me! I will admit, if I had to be that sick, it was certainly nice having her home to take care of me! One thing about it, life is rarely dull around my house!

 

 

     I kept reminding myself as I was sick last week, that it was really nothing compared to what this brave little guy has been going through. As you can see, he has lost most of his hair and is a bit puffy from the steriods. He has been having some wonderful experiences made possible by generous people in town. Our local fire department made him and honorary fireman, even letting him go on a call and hanging his picture on the wall. One of the most moving things I have ever seen is that they put out the word to other fire departments in the state, and over 100 departments each sent him a hat...such kind people in the world.

 

     Today is an important day for our friends and a very difficult one. Luke has his bone marrow test today and this is the day they have to decide to either have the bone marrow transplant or extremely strong chemo. Whichever direction they choose, it makes the other no longer an option. The doctors are split on their advice, so our young friends have to make this decision on their own, with God's help. Either choice will be dangerous for their 5-year-old, but may save his life. I can't imagine being in their shoes. So, please say a prayer for them today...for guidance and peace with their choice.

 

Prayers for Luke

 

 

     This will be a different blog post than usual. You see, there is something more important going on than anything I could write about food, flowers or decor. That sweet little boy in the picture above, he is very sick and because I believe in the power of prayer...I want to share a little of his story with you.

 

     Luke is the son of close friends of ours. His dad works with my husband. He started kindergarten this year and he loves baseball, Hot Wheel cars and his brother and sister. Around two years ago, his parents were blindsided when what they thought was a playground injury turned out to be leukemia. I can't begin to tell you what they went through for those first months. Weeks in the hospital in St. Louis (about 100 miles from us) followed by daily trips back and forth after he was released. Many trips to the ER, horrible sickness from the chemo and the tests all while his mom was nursing their youngest child and his older brother was in the first grade. It was worth it all, the leukemia went into remission and for the last year he has taken maintenance chemo by mouth and had monthly trips to St. Louis. While there were still a few bumps along the way from reactions to testing or his weakened immune system, he has been a healthy, happy little boy for a year.

 

     Last week, this young family was stunned once again. Luke's routine monthly checkup showed the leukemia was back. His spinal fluid is 95 percent leukemia cells and it is also in his bone marrow. The picture above was taken this past Sunday...you would never guess he is a sick child by looking at him. His older brother's coach arranged for him to get to play on the team for a game, which was a dream come true for him. His two-year-old sister and his brother (a third grader) have both been tested for a bone marrow transplant. The results will take two weeks to get back. Yesterday, he started agressive chemo and his family is facing driving to St. Louis every other day until December, with a few days spent in the hospital there. If all goes as planned and one of the children is a match, the transplant process will begin in December with Luke and his mom staying in the hospital for 100 days and then in St. Louis for another 100 days. Christmas will be spent in the hospital, mom will be away from her other children for 7 months, dad will be working full time and taking care of two small children and the things that Luke will have to endure are just too painful to write about.

 

     They are an amazing family. They have a strong faith and support from family and friends. They have used the past "healthy" year to raise awareness and funds for research for childhood cancers. They give of themselves to others and they have been through more than any family that I have ever known. As I discovered "the plan" for their next year...I was simply overwhelmed by what they have to face and yet when we visited with Luke's dad on Sunday, he was ready to do whatever he had to do to save his child and he was already talking about how they planned to give back once Luke is well. I am old enough to be their parent, but they seem so much wiser and stronger than I will ever be.

 

     There is so little that we can do as their friends. A plan for taking meals is in place. (Have you seen Mealtrain.com-fabulous for things like this). They have volunteers for babysitting and Luke's dad has been told he can work some days from home. Mostly, what they ask for is prayer. Right now, the prayer is that one of the siblings is a match. This is the best possible thing that could happen for Luke.

 

     Because blogging is my way of reaching many people, I ask for your help. I ask that you pray for our friends and for Luke if that is what you believe in. If not, I ask that you just send good thoughts and positive energy their way. I ask that you consider signing up to be on the bone marrow donor list, because I know this would be something our friends would want others to consider. If this touches you in a way that you would like to do more for this family, send me a message and I will tell you how you can do that.

 

     Last week was one of those that was extremely painful for all of us who love this family. It was so unexpected and it made us all feel so helpless. It also made me very aware that anything in my life that I've been complaining about...is nothing. So, if you are so inclined...please take just a moment to add this sweet child and his family to your prayers today. Thank you.