Saturday, December 24, 2011

Christmas wish


Twas the night before Christmas and all through the house not a creature was stirring except a gift wrapping eating cat. The children all nestled in bed with Wylie's feeding tube feeding tube wrapped around his head, and Seth dreaming of catching Santa instead. As I type Wylie's blog I heard such a clatter and what do my blurred red eyes see out on the lawn but eight tiny reindeer with Santa on his sleigh. So I asked Santa did he think I was good this year and he said it was a 50/50 split for sure. So with a lot of effort i could turn my coal in to diamonds he said. Then he suddenly tx'ed his reindeer to dash away dash away all and then he lost his call.
I asked Wylie what his dream Christmas present was and this is what he told me. "I want my tumors to go away." Wylie and his brother will have a great Christmas thanks to many folks that love them very much. Wylie is a loving boy who wants to do what other children are doing. He has been blessed with the greatest school and community ever. He was surprised by a group of his elementary teachers, principals and friends singing Christmas Carols. Wylie is now taking the new nutrient product so many have graciously helped with ordering. We were visited today by Wylie's baseball coach and family, then a family from Australia today. Wylie's number one favorite dream vacation destination. He was so glad for the visit and stories of Australia.
p.s. Thank You Lord for a blessed Christmas that Wylie and Seth could enjoy. Thank you also for the many prayers and help from everyone this year. Happy Birthday Jesus.

Wednesday, December 14, 2011

There is no known medical cure for Wylie's condition


I was told total that there is no other medically known treatment for my sons condition which has now progressed to high grade Glioma and spread to other area of the mid brain. Medically they informed me today that they can only now try to keep him comfortable from this point on and will not use chemotherapy any longer. We will try every attempt to strengthen his body to help him fight. Many known natural choices have not been an option while on chemo or radiation. Wylie is fighting for his life. I am fighting for his life and asking that you join in the fight. I wish to try products that are not covered by insurance. We have been doing many different types over the past year trying to heal Wylie. Unfortunately many are used in clinical trials that are not available now because of the treatments he has had. I know of one product available in the U.S. that is could decrease the tumor size. These tumors are multiplying and progressing very rapidly. This product is expensive and would require daily treatments. Wylie's doctor told me today that it would take a miracle for him to survive this tumor progression. She also believes that Prayers are much stronger than any medicine that she could give. Please start your prayer chain keep them going if you want to give Wylie a chance. He is 11 years old. All he wants is a chance to play, ride a bike again, and live. If you have any suggestions, products you wish to donate we can try please e-mail me at backtobasics@elljay.com. Please ask God to help him.

Saturday, December 3, 2011

Round One Chemo. Score 1- Wylie 0- Tumor


Round One chemo complete.
December has arrived. November was eventful after the boys and I moving the end of September to our new house to better accomodate Wylie's growing heathcare needs and comfort. Wylie celebrated his 11th birthday on Nov 3rd with a movie then a seafood dinner with a few of his buddies at home. We had our first snowfall of the season already. On the medical side of things we have just completed the first series of chemotherapy treatments. Wylie has been very sick for the past few days. Sort of a normal thing after every other wednesday treatments for the past 2 months. Very confusing as to how much the medicine and how much the tumors are effecting Wylie. He is a strong boy but becoming very frustrated with all the pain,sick feeling, and being unable to care for himself. It is so hard for Mr. independant. He can not play, write even read very well right now. He has been to school a few times this month. He is very smart and usually catches up on those days or with the help of his new homebound teacher Mrs. Roberts. He lost his friend and homebound teacher Mrs. Myra Thomas to metastatic breast cancer recently, she also was his first grade teacher. Wylie can only walk with assistance. Wylie is now wheelchair bound. His last attempt to walk independantly ended with a head injury 2 weeks ago. Getting in and out of the car is his biggest challenge every day having to take his little brother to school and go to work with mom where he has his own room. The therapy has created much more weakness and dizziness than before. We celebrated thanksgiving close to home with lots of turkey and stuffing. He loves his real tree and milticolor christmas lights. He is excited about having a nice Christmas and celebrating it in our new home. Although we only a few nice days out of a week we look forward to the brighter days. Lots of rest and love helps. He is strong and a fighter. Wylie now has a feeding tube because eating has become a chore. Choking not much fun either. Chemo makes all muscles weak even the swollowing muscles. The brainstem where the brain tumor is controls swollowing, breathing, and use of arms and legs. Wylie's brainstem tumor has grown considerably since previous MRI. We pray the chemo and herbal treatments will help slow the progression. His next MRI will be next week. Please pray for a change in this tumor that has devastated Wylie's life. His brother and I want Wylie back to being able to enjoy life with us. He enjoyes movies and playing computer games. Wylie's only wish is to stop hurting. He said he doesn't want anything for Christmas he has everything he needs. But mom knows better! My biggest wish is for my children is to know God, have good health,happiness and to experiece the world first hand. Wylie's top wishes are seeing the Great Barrier Reef in Australia, the Statue of Liberty, the Rocky mountains, Arizona again. We do have an offer to visit a friend in Colorado in the spring. Maybe we will be well enough to go to New York in the summer. Good health and Merry Christmas to everyone!

Thursday, September 22, 2011

We're Back! Tumors have relapsed!


Fall is near by and it is been a cray summer for our family. August 24,2011, 1 year to the day after Wylie was diagnosed with his 2 tumor areas, he has shown new tumor growth of his primary brainstem tumor. So now were talking CHEMO.
Wylie returned to school part time in August and is now home bound due to his 2 most recent surgeries. There was an attempt to surgically correct his eye position last Tuesday. The steroids made it very difficult for the surgeon. Wylie's double vision is currently worse and as his vision improves this will be worse we are informed. The operation was a success but the patient can't see now! Wylie can see for the most part but 2 of everything. Makes seeing at distance and reading a little challenging. But they say two ice creams are better than one! Wylie began home bound learning today. He is tied out. He also had a port installed in his chest to being a "non-chemo" chemo next week to maybe take down swelling of the tumors and take his off decadron(steroids). He did well with this surgery also, but failed to absorb O2 well enough to come home from day surgery and spent 2 more days in the hospital. He went into surgery with fluid, collapsed lung areas from the steroids and inactivity, therefore the surgery caused some complications with weaning off oxygen. We what did we do to help...We pushed the edge and went to see his favorite baseball team the Atlanta Braves! Wylie was given box tickets a few months ago so we had to go. We didn't get the memo for the time change and showed up just in time for the final pitch and saw Styx in concert. We were given rain check tickets for Sunday's game and Wylie was able to see the game with his buddies Mason,Mariano,and brother Seth. We had fun. But all good things have a price. Wylie has difficulty keeping his balance and falls nearly every day. Getting in and out of bed and car is a challenge. Finding it more difficult with time. Very weak on his left and unable to use his right hand. His legs can barley life his body up to the car seat. He still can fall out well though! He can't climb steps very well and this has been my main concern with returning to school. One week ago he lost feeling in his right arm. His voice is weak and swolling a bigger challenge in the last month. We were able to attend a lighthouse retreat for families of children with cancer. We had great volunteer family partners nurture us with God's love. We met lifelong friends and found comfort in there equally challenging lives. There was just an understanding there like no other. God is with us through all of this. He loves us and will be no matter what. Wylie felt for the first time these people real get it! What he can't do and what he can. He often tells me I don't understand because I push him and expect more out of him than ever. Well, I am a mom! I will also expect that of him. no matter how weak I will always encourage and push for him to want more Wylie I am so proud of you! Wylie will be starting chemotherapy beginning next week along with the anti-swelling chemo drug. We will keep you posted. Thanks for your support.

Thursday, July 21, 2011

Summer news


Wylie is holding strong, the heat is not his friend. After another ER trip for dehydration. Our latest treatment seems to be dong well to maintain the symptoms from the brain tumors. He has over come the vertigo he was having for the most part. We have increased the steroids a few weeks ago and he is feeling better. He has now developed a complication with the lungs. They are collecting fluid and collapsing some of the in the lower regions of the lungs. We are sure a complication of the steroids and decreased activity. Wylie has not regained his strength in his arm and hand as we have before when the steroids have been increased. We are hoping for physical therapy to help, which we will begin next week. We currently are having to travel to his appointments an hour 1/2 away weekly to Emory. We are very excited about his appointment next with an opthalmologist that specializes in BrainStem tumor related visual problems. We want to see if his left eye that turns in can be corrected with surgery. His eye sight is changing and he is having difficulty seeing to read and blurred at distance. We will have another MRI in August to determine if there are any new changes. We are preparing for re-entry to school for Wylie. The
5th grade. So let the middle school years begin. He is nervous already. He is a great student and will try to go full time in August. We have been working on getting Wylie a wheelchair and a foot support for his foot drop, politics and crazy insurance take forever to get approved. please help us pray they will be available to him soon. Wylie can not walk long distances. Car to the door is about it. SO much atrophy in his right leg, knee pain and back pain makes walking across the parking lot a big deal. We have attempted swimming a few times this summer. Balance and control is really tough in the water for him. This summer we were able to take one trip to visit friends,grandma pat,Aunt Jenny and Uncle Duncan over the July 4th holiday in south Florida. The heat is just too much for him. Steroids make you swell even worse in the heat. We are trying very hard to find peace with all the changes in our lives and surround ourselves with loving friends and family when we are able. God heals. Wylie prays for a day without pain. CHiropractic, therapy and Meds help. Thank you for all your support. Things are very challegning for us right now.

Friday, June 3, 2011

Summer is here.


Soon we will be celebrating one very very long year of survival for Wylie. He is holding his own lets just say. Schools out. Although he will miss his home bound teacher Mrs. Myra he is relieved to have completed the fourth grade. Excelling on CRCT testing and with honor roll average on completed work. His doctors say nothing changes the smarts in a kid. "If they are smart they are smart." He is struggling with changes in medication. Less steroids means more fatigue, attitude, and atropy in the right side, and loss of balance, control of tounge, and throat. The MRI on June 1st showed growth for the first time of the primary tumor in a year. Secondary/posterior tumor is very active. THis was the domant one. We sure made is mad. Could be radiation effects or simply the process of dying tumor cells, we don't know. Meeting in two weeks to discuss changes after medical guru's meet next week to evaluate the changes.The form a game plan. Dr. Janss know's her stuff we have a new MRI test that measures proliferation of the tumors. We may have to wait until August to compare the changes to really compare. Wylie playslike a 10 year old when he can. Enjoying the cool pool and air condition in between. The heat staying at around a 100 or more is especially rough on him. Any swelling is more than he can handle. He finished his baseball season as part time coach. He enjoyed the involvement. I can honestly say when was playing it came so natural to him. I pray he will be given another chance to enjoy the things he loves most. Not much planned for the summer yet. Can't hide from the heat. Would love to see our new York relatives. Thank you so much for your support. We cry we laugh we get up everyday to fight for another day. We are warriors!

Thursday, April 28, 2011

God will save me!






"God will save me, that is a fact and don't forget it, Love, your little warrior."
When I placed on my computer "Save my son" Wylie then place his own note with his own idea of how it's going to be. He says he just knows. God talks with him and tells him how it's going to be. Wylie is a 8 month survivor from his initial diagnosis, and nine months since initial symptoms appeared. Not sure how, but he just knows things that others don't seem to be aware of. I believe he is a chosen one, and angel for sure. He is charismatic in his own special way. He loves his family and especially feels it is his place to care for his little brother Seth. Wylie seems to radiate in energy and move us in his stories. He is passionate about life and what it he had to offer in it. He want to help others and is considering being a neurosurgeon,or scientist. He was recently befriended by a University of Florida archaeologist Alex Kittle who gave his some of his dig finds and invited him to the University to see what they have dug up. Wylie was recently blessed with a Make A Wish trip on the Disney Magic cruise. He was in dream land for sure. He met pirates,snorkeled seeing Nemo & Dora, giant sting ray's and giant sea turtles. He Sailed with all the Disney characters to the Virgin Islands. He had a spectacular time with his family. He was very tired and weak after this trip and had a few falls. For Wylie Any falls in which he hits his head spirals into a downward pain cycle. He is recovering well and feels great today. Dodging a few very scary tornado's made for an interesting. We are so sad for the victims of the Tornado of April 27th in Tuscaloosa Alabama and those here in Georgia. Wylie's dad's town of Piedmont Alabama was hard hit. Wylie is back and just finished his CRCT testing time. He has been doing homebound schooling. He said it was a breeze. We are down to the final school 20 day's of school count down. Maybe he will be feeling good enough to finish the last month at school. We are waiting for the next MRI and pray for tumor shrinkage June 1st. We are still using natural herbs/vitamins, and interesting blue green algae shakes that start Wylie's day. We have added Papaya enzymes to attack his brain stem tumors. The secondary tumor seems to have calmed down and hopefully shrunk. No headaches and no vertigo for the past few weeks. Its time to decrease nasty steroids and heal. His doctor thinks he is doing great. Weak from fatigue. Wylie was asked to help play and coach on his baseball team from last year. He says he is ready for action in tonights game. Enjoy the pictures! Please share your comments so that Wylie can see that there are people out that that feel what he is going through and can share in his excitement. God bless all of you for your help and support to make Wylie's life special. His goal is to get to the great barrier reef. We just have to figure out where exactly that is!

Wednesday, April 6, 2011

Spring is in the air. Wylie's progress is good.


Wylie has climbed many mountains since last posting. He is holding up well. A little tired and cranky these days. He is practicing baseball to a limited level. Helping coach his team when he is down. Ball season starts next week. Wish him luck. His most recent MRI in the first of March revealed a shrinkage of his primary pontine tumor of 3%. The secondary medullary tumor has increased in size. This tumor extends down into the upper spine. Oncologist Dr.Janss beleives this could be a reaction to radation treatment. Symptoms became worsened 1 month ago when his ability to speak and swollow and function. Wylie is now in a higher dose of steroids to decrease the swelling in his brain. It worked great, he has now inproved and is now back doing school work as a homebound student. Thanks to Aunt Tammi we were treated to a fun filled weekend in Chattanooga. Wylie enjoyed the trip touring the Tennessee River on the old Southern Belle paddleboat ship. A great way to start our spring break. Wylie celebrated this month with family and friends as Allyson from The Make a Wish Foundation informed Wylie that he was granted a Disney carribian cruise. We are so excited! As winter comes to a close our spring has started with a bang. Tornado's hitting Ellijay this week left us in the dark ages with carrying water and primitive cooking. For a family that loves to camp it works for us. Our spring break goal was to walk as much of the appalacian trail as possible. We evaluated our options and chose camping near the trail at Vogel state camp ground in the north Georiga area. Wylie made it to the trail, YES! We managed a steap 3 mile hike. Wylie was as proud as we were of him. The storm came four hours later. THa goodness we took advice to pack up camp after only 1 night and head home. The storm resulted in damaging tornado and 70 mile/hr winds in our home town. We will be excited to leave the 35 degree temperatures to discover whatever the Carribian has to offer. We will post again to up date after Wylie's wish trip.

Tuesday, February 15, 2011

It's been a long cold snowy January. Wylie has his ups and downs for certain. The rocky road of tumors. He has nausea and occasionally beyond. Doing relatively well for the course. Wylie has been in school on and off. We have played in the snow and hiked on teh pretty days. He has as much fun as a 10 year old can in between. He is enjoying his new puppy dog, a 3 month old Storm Chaser an English Bulldog, with a black eye. That was one of his wishes if he could wish for anything. However his and own wish is for at at this point a short haired medium height dog that Wylie can use to support him when he walks, possible with some special needs training. He thinks he would like something like a black lab if anyone knows of a mature,fixed, house broken, calm devoted dog that would make a great that needs a great kid. Wylie's clinic visits every other week are looking good according to oncologist Dr. Ana Janss. Feb was off to a great start with Wylie being so much more interested in his friends and hobbies. Enjoying playing with his brother and sister and taking care of their Christmas horse Caraway. Taking more interest in sports and even participated in a little baseball practice with the family this past weekend. Wishing he could play this year. Maybe he can join in just a little. Risks of injury were too well known today when he fell at school and hit his head on a stall door while mom was working out of town. The nurse said The pain was intense, began having shocks in his neck and spine and began having blurred problems. To get to the good news the CT revealed no bleeding, but created a quite an ordeal for all of us. Co-mom Sherri took him to his pediatrician Dr. Todd and when she examined him and referred him to have the C.T. scan. Thank God he is home resting this eve. He asked today "if I was in in heaven would I hurt like this?" We certainly don't want him to find out, and he was assured that he was not going anywhere. Heart breaking question to say the lease. The most stressed day in a while. We know he is strong and will stand tall through this. God has a great plan for a fantastic boy. Thank you for all your support.

Wednesday, January 5, 2011

A happy New Year for Wylie is what we wish!



Certainly it's a happy New year for us. Santa Clause, all God's angels and helpers were sure good to Wylie and his family. Santa managed to adopt a horse for us and we were all very excited. Santa's visit to the house was sure a surprise along with three of Wylie's teachers Mrs. Mandy, Nancy and Melody. Wylie was on the nice list for sure. Seth his brother was sitting on the undecided list, Just kidding! He sure gave Santa a once over with questions about the reindeer and how the fireplace works for him to climb down it. Wylie joined "rock band" along with his brother and sister thanks to Santa! Thank you to everyone that made this Christmas! Just ask Wylie, he said it was "the best Christmas ever." Wylie's oncologist Dr. Ana Janss and his Nurses at children's are taking care of him well. Holding strong, tests are good. Next MRI is planned in March. we will be looking for shrinkage or dying of the tumors or seeing if there is any new growth. We have had a rough year and pray for a better healthier year for Wylie. Wylie received yet another surprise from his Texas angel's, a signed Alabama Player Jersey #22 Mark Ingram, he cried I think, he was so excited. He has been doing great for the past few weeks. Having traveled to see friends and family in Florida to celebrate the new year he did extremely well, he was able to spend time with his Aunt Jenny whom is just beginning to walk after a near fatal auto accident in May in which he lost his cousin Jarret. He was also able to visit friends Dr. Ann and family friend Lisa with her family to bring in the new Year. Spending New Years day with his Grandmother and Uncle Duncan who felt blessed he was able to be there. Weather was refreshing in Florida. Wylie had some usual symptoms of nausea and headaches. Back in Ellijay Wylie Started the new year off well with his first day back to a full day at school since early November. Great success! Wylie has caught up his work and really enjoyed a normal day. What's normal you ask? Glad to have a few days of cleaning his room, feeling like messing it up, showering without help, or getting dressed. We don't take simple life for granted. I doubt Wylie will ever feel that way again. He is excited about life again. Wylie loves to read and is starting a new book "Make Miracles in forty Days." Wylie would be the first to tell you think positive, attitude is everything. He says his prayers everyday and he misses his friends and hopes his next doctor visit will be a positive one next week. All the snow is gone. No more sleigh riding until next time. Happy New year to everyone!