Luke's Tuberous Sclerosis Page
Luke's Life Story |
Updated November 2009 Luke Matthew, 12 years old, is my second child and little brother to my first son, Nicholas Chase, who turned 14 years old in June of last year and older brother to Jacob 6 1/2 years old. Seven months into the pregnancy, Luke was noted to have two heart tumors on ultrasound. The tumors were thought to be benign rhabdomyomas. At a follow-up ultrasound a week later, two more tumors were discovered with one being dangerously close to a heart valve. The possibility of Tuberous Sclerosis was suggested, then quickly dismissed by us knowing of no family history. A week later the tumors were even larger and Baby Luke displayed heart stress at a routine stress test. The possibility of early delivery was discussed. When his heart slowed, mom was admitted to Labor and Delivery for monitoring. The monitoring showed additional heart stress and threat of fluid around the heart. It was determined that Luke would be delivered at 36 weeks gestation. There was also the theory that mom’s hormones were stimulating the growth of the tumors.  We were so overjoyed to hold their 6lb 5oz Baby Luke before he was whisked away to Intensive Care. Since Luke was delivered C-section, mom went to the recovery room but quickly was at his side touching him within an hour after delivery. It was so difficult not to be able to hold and cradle this new baby boy. The second day we were able to snuggle, hold and feed our Baby Luke. We felt so much love for this little baby. A beautiful and magical relationship developed between big brother, Nicholas, and Luke right before our eyes. Nick's love and caring for his newborn brother was a beautiful, amazing thing to witness. The joy was so intense. Tests for Tuberous Sclerosis were performed by an ultrasound on the fontanel and examination of white birth marks and nothing came back positive. Mom and Dad were so relieved. On Sunday, we were able to take our Baby Luke home and enjoy our family of two little boys.  MARCH 1996One week of age: He is such a delightful baby. Lots of blond hair and such a sweet serene face; his features resemble his father's. We had an appointment with Pedi-Cardiology and sure enough the largest heart tumor reduced by 25%. Assurance came that the tumors themselves were benign and will reduce with time. Follow-up appointments were scheduled at 1 week, 1 month, 4 months and 10 months of age. At each visit, the tumors continued to reduce.MAY 1996Two months of age: Faint white spots have appeared on his body that were not initally noticeable, but were easily seen with the dermatologist's Wood's lamp. Nick (big brother)fortunately had none. These hypomelanotic macules evolved with time to become easily noticeable. He presently has approximately thirty small patches on his body.Upon this discovery, the possibility of Tuberous Sclerosis became more of a reality. After a visit to a Genetics specialist in Houston, Tuberous Sclerosis was given as a preliminary diagnosis. We later found out that it is very typical that the white birthmarks do not appear until 2 months of age.  OCTOBER 1996Seven months of age: Luke had his first seizure. For two or three days Luke had a runny nose and fever. Then it happened: Mom was holding Luke on the floor leaning against the couch. Luke began to raise his arms up and flex. He released for an instant and then repeated this six to eight times. Luke then collapsed onto her chest and his arms fell like noodles. He then proceeded to fall into a deep sleep. Mom paged Dad, who immediately came home from the hospital.Luke was evaluated by his Pediatrician, who then consulted a neurologist and made appointments for an EEG and Cat Scan. The EEG confirmed that Luke did in fact have a seizure. Tranxene - a seizure medication was immediately started. A week later, another EEG was performed and the dose was increased. Luke became very nervous just before each administration. His body accustomed to this dosage after a few days and we haven't noticed other side effects to this point. Mom and Dad still have yet to witness an infantile spasm (head nod, blink, etc…). Our neurologist feels that we caught the seizures early, based on Luke's immediate response to Tranxene. A MRI was not immediately performed due to the upper respiratory infection which increases risks of general anesthesia and intubation. Therefore, three weeks after Luke recovered from his cold, a MRI was performed, which revealed innumerable tumors. Due to the enhancement (sign of activity) of the tumors, Luke will be followed up in six months with an additional MRI to help rule out the enhanced tumors being a small giant cell astrocytoma. A renal ultrasound discovered one cyst on his right kidney. Tumors were discovered in his eyes. These are not to be considered to place vision at risk, but will need follow up from year to year. Mom and Dad completed their screening for Tuberous Sclerosis (an examination of brain, skin, eyes, and kidneys); no signs of Tuberous Sclerosis were found. The doctors now give them a 1% chance of carrying the gene and passing it on to another child. Mom, Dad and Luke were able to donate blood for Tuberous Sclerosis research with Dr. Hope Northrup. We are thrilled to contribute to her TS research. Luke appears to be developmentally on target. He is a wonderful baby that loves to be fiddled with by his big brother, Nick, and always has giant smiles and coos for Dad when he comes home. He loves to snuggle with mommy and has such a wonderful soul. He is so tolerant of all the medical visits and completely adored. DECEMBER 1996After an EEG mid-December, is it thought that the medication Tranxene has successfully controlled Luke's seizures at this time. We are thrilled. He is to continue on the medication for about two years after being seizure free. Luke is on all fours now rocking back and forth as if he is reving his engines to start crawling. Go Luke Go. Tomorrow we have our three-hour evaluation from Project Launch, an early childhood intervention program.Our visit with Project Launch was fantastic. They evaluated him in several different developmental areas. The results were: Cognitive: nine months; Feeding: nine months; Perspective: nine months; Gross Motor: 8 months; Social: 8 months; Language: 5 months. It was interesting. Todd and I were so obsessed about getting him to crawl, when in fact he was right on target with his gross motor and we should be focused and stimulating him with his language. It is so nice to be accurately focused. Luke has yet to explore his consonants like dadada, mamama, bababa. Project Launch will come into our home and teach us how to stimulate him with his language and visit on a regular basis to help us identify any concerns with his development. We are also very excited to start him in Music Therapy. Music Therapy is a stimulating time and assists the child in exploring their language. JANUARY 1997Luke started to crawl a couple days before Christmas. He still enjoys rolling across the room to obtain a desired object but he is crawling. We are thrilled. Nicholas, Luke's big brother, is still so kind with Luke. They are so attached to each other. I love to watch them interact and the way they care for one another.MARCH 1997Luke started having head nod and staring seizures in January and February. The tranxene was not controlling the infantile spasms and we changed his medication to Vigabatrin. He is responding effectively to this new medication. Luke on March 3rd for the first time starting to use the consonant D. We were so thrilled. All of a sudden DaDaDa started to come from his little mouth.APRIL 1997I hosted along with an Honorary Committee a Jewels and Jazz benefit for Tuberous Sclerosis in the Galveston/Houston area. It has been a tremendous amount of work but extremely worthwhile. The Gala including cocktail party, silent auction, served dinner and program about TS was held on April 11, 1997 with 267 people attending. We sold 2183 Ford Explorer Raffle Tickets at $25 a ticket through over 150 volunteers. In total, the Jewels n Jazz benefit netted over $70,000 grossing over $90,000. We received coverage in the Galveston and Houston papers and the CBS Easter Sunday News. There was also a segment with Claire Cassademont on the CBS Spirit of Texas Morning Show about Tuberous Sclerosis where Dr. Northrup, myself and Luke appeared. More valuable than the money raised was the increase of awareness in our community of what TS is. The Sponsors, Honorary Committee, Steering Committee, Volunteers and Contributors are people that will remain forever close to my heart. Through this we are able to contribute to TS research, publish a book about Tuberous Sclerosis for families and imbark on several other projects. A Luke Runyan Tuberous Sclerosis Association will be created to administer some of these projects.To see photos of this event click on this link. MAY 1997Now that the benefit is over it is sooo nice to relax with my boys. We enjoyed a two week vacation in Florida right after the benefit. Luke has remained seizure free since we started the Vigabatrin at 1 1/2 pills a day. The day after we got home and were attending church, Luke started throwing up. We noticed he was having a seizure and after about five minutes we noticed it wasn't stopping. We immediately got in our van driving to the Emergency Room traveling as fast as we could while trying to be safe in traffic. Luke was stiff as could be and had his eyes rolled back. After arriving to the ER (10-15 minutes later), we were immediately taken back to a crash room. By the time they started the IV, decided which drug to use and administer it Luke had been in the seizure for 25 minutes. Due to this length, his breathing was difficult and delayed. They immediately put him on oxygen and took a chest xray in that we thought he had aspirated vomit. He was subsequently admitted to the hospital to strengthen his oxygen levels.This kind of seizure is called status elepticus. It is a seizure that doesn't stop and can be life threatening. This can also be the case if seizures appear in clusters and do not stop. This really surprised us in that he had been seizure free for several months. Although his seizure threshold was lowered due to fever (101.3), teething, infection and medication reduction of the Tranxene. The combination of the items caused him to have this seizure. Other items that also reduce a seizure threshold include sleep deprevation, stress, antihistimines, etc... Subsequently, Luke medication (Vigabatrin) was increased to two tablets a day and we haven't seen any other seizures. Luke had a follow up MRI last week. It showed continued enhancement and concern for the left frontal lobe. It is thought to be a glioma although we were reassured that this does not happen with TS and to follow it up in six months with an additional MRI. We were given a consult to Neurosurgery but feel that we would not proceed with any type of surgery unless Luke was experiencing difficulty from the tumor. Luke has a lot of brain involvement. We are aware that the quantity of brain involvement and the early onset of seizures correlates with mental impairment in TS children. We spoke to our Neurologist who confirmed us but also let us know that this generally is the case but there are severly affected children with a small degree of brain involvement and there are mildly affected children with a lot of brain involvement. This was comforting or gave us something to hope for Luke. He is doing remarkably well considering his brain involvement. He has taken his first steps and is developmentally on target. He has begun to connect words as language tools and is saying Up when he want Ups. We are thrilled. We continue to receive Early Childhood Intervention and are agressively assisting him in his development. We are very grateful for all of those that have assisted us and are comforted by the knowledge we have gained in regards to Tuberous Sclerosis this last year. We know that that is our armour as we care for our little boy. JANUARY 1998It is interesting to turn the year and enter 1998. We wonder what we will experience this next year in regards to Luke and the rest of our lives. As we look back on 1997 and the benefit we did as we were going through the grieving process and accepting Tuberous Sclerosis into our lives it all seems so surreal. Luke is doing extremely well. Developmentally, he was starting to really lag behind. At 20 months of age on December 1st he was developmentally assessed and was found to be cognitively around 11 to 15 months. He wasn't bringing a pencil to paper, putting a peg in a peg board or a puzzle piece to a puzzle or eating with utensils. There was essentially no language just babbling. We would spend so much time trying to do early childhood intervention and it didn't seem to do any good. There was just a dead end and baboom all of a sudden things starting to click for Luke after that week. All of a sudden he was interacting with things so differently and actually learning and learning everything. It was soooo amazing. On December 15th, he was assessed by a different organization and was found to be at 16 months developmentally. And now a month's time later, he may just very well be on track for his age. Those four weeks in December he probably jumped six to eight months in development. He started bringing two items together. For instance he would hug a baby doll but not want to cover it with a blanket or feed it a bottle. Or with his toy cars he would run it along the floor but not put it down a ramp. Now he was putting pegs in peg holes, putting puzzle pieces in puzzles, eating with a fork, correlating language with objects, saying about 15 words and having a vocabulary of about 35 words. He would listen to us and understand what we were talking about. Like we would say it was time to go and he would go to the door. Yesterday, I said it was time to go and he got his shoes. These things have been so exciting for us and is our own little family miracle. Now we sit down with Luke and can actually teach him how to operate a toy. Like hit the balls with the hammer and watch them go round and round then pick the ball up and put it back in the hole. It has been wonderful. We just redesigned the play room. It now has a simple white cabinet where we keep all the toys. A table with two chairs, lego table, TV, VCR, bean bag and large table for my projects. Then we put on the wall a mirror, chalk board and dry erase board. It is much more simpler and more learning friendly. When we want to teach Luke we get a toy out of the cabinet and sit at the small table with him. It is wonderful. I also have my work table and cabinets in there where I quilt, paint, scrapbook and work on miscellaneous projects. Nevertheless, Luke has also medically been doing quite well. He seems to catch just about every bug that comes along. His brain tumors have increased in size but not yet to a worrisome point. We will redo his MRI in May of 1998. His MRI's have been repeated every six months or so. Our Neurologist, doesn't feel the next one needs to be so soon, but we will be moving and will change insurance policies and repeat all testing. His Kidney cyst has doubled in size but so has his kidney. His heart tumors have reduced in size and diminished. Luke is on Vigabatrin, which has been extremely successful for him. He seizures are under control other than febrile ones that are induced from a fever. Unfortunately, it can also be a low fever. When this happens Luke has a partial seizure that is statis elepticus. Which means that it won't stop without intervening and can cause respiratory difficulty. This has often been accompanied with an ER visit in that the drug he has to receive is administered through IV. At one time Luke turned blue and his breathing was sooo slow and he was in the crash room at the ER with them breathing for him. We have to immediately try to reduce the fever in that that is the cause of the seizure by giving him a Tylenol suppository. If he is not vomiting (which is usually accompanied with the seizure) then we will also try to administer Motrin to him orally. We then give him a suppository called Dyastat. It is a valium type gel that does not need to be refrigerated. We carry the suppositories in our diaper bag and bedroom. After about 20 minutes it will set into his system and he will stop seizing. We also have oxygen here at the house to assist him with his breathing until the drug sets in. We used to do Ativan injections prior to this IM (in his muscle) to stop the seizure. These don't happen all that often about every six weeks or so when he has a fever. If we can catch the fever before it gets in the 100's then we can manage it with Tylenol and Motrin orally and avoid the seizure altogether. Unfortunately, sometimes the fever suprises us. We could also combat this by medicating Luke with Phenobarb or other similar drugs in that class to eliminate the febrile seizures. But these drugs effect his cognition level and dope him up. We have also read studies that the long term use of Phenobarb itself can cause mental impairment. So even though these seizures can be threatening... we feel that by managing them appropriately we can give Luke a type of advantage to help him learn as much as he can by not altering his cognition. These febrile seizures are usually outgrown around the age of three or four when the brain matter is more matured and not triggered easily by fevers. We look forward to a delightful year with Luke. He is starting to call his brother Nicholas "brother". I am also very interested in getting him in a Pre-School environment. I have always felt that since I stayed home with my children, they wouldn't benefit from a pre-school environment until the age of three. I disagree with that now in that Luke loves the stimulation from other children. I wish I could get him in a school now but unfortunately he is only on waiting lists. I know Luke would benefit greatly from a child friendly environment to stimulate him. As soon as the fall arrives, he will be registered in a two year old class. I think some of the things that have helped and sustained us the very most these last two years, have been our faith in God, family, friends and service to others. I enjoy serving others and looking outside of myself. As I emmerse myself in the needs of other people, I realize that my life is managable and not so difficult. I have also made some wonderful friendships that have sustained us through our difficulty. I focus on the positive and do not dwell on the negative. I try to take care of ourselves spiritually, emotionally and physically so that we can have less burdens to carry. And maintain an eternal perspective to understand the entire picture rather than just the moment. I love my children very much and will continue to teach them to reach their fullest potentials. 
OCTOBER 1998Luke continues to do extremely well. He is progressing at a very rapid rate and cathcing up to his age range(30 mo) in the areas of speech(22 mo), cognition(24 mo), and fine motor(22 mo). As always he is on target in gross motor, social and self help. This last summer was difficult with the move and entering the classic twos with head banging and hitting of others. We were a little worried there but now he is so adorable and delightful. He is full of so many kisses and hugs. He is doing so many funny funny things. He understands most everything now and can actually answer either yes or no. He can also say his or brothers name. His vocabulary has increased to probably over 300 words there are so many now that we don't count them anymore. In February, he would have never understood when you said it was bath time to go to the bathroom. Now he understand so much more. I think that jump in his development has decreased his frustration level along with mom and dad's too. He has such a huge smile that we see most of the time. His seizures are completely under control with the Vigabatrin with no more febrile status seizures since December of 1997. His MRI in May of 98 indicated no new growth of his tumors. It seems to be stabilized for the time being and we will have a repeat MRI in one year now. We are so thrilled for our sweet little boy. He loves his home, his brother, his mom and dad and jumping on the trampoline. He certainly likes deep imput and we have situated our home to meet his needs. We have a tramp, swingset, sand box, water toys, playdough, markers and paints out most of the time. He has not entered the imaginary play yet and really doesn't play with toys that do not give him deep imput. 
MARCH 2004Wow! It has been a long time since I have updated. Dysfunction has certainly been in our lives. As I struggled with a difficult marriage and then was divorced in February 2002 after having my third child in July of 2001. Jacob is a doll and is now 2 1/2 years of age. It took a lot of courage to have another child for me. I wasn't willing to have another one if either my x-husband or I had Tuberous Sclerosis. But we had our DNA testing and came back as not having TS. I was worried to have another child in fear of having another special needs child but to our thrill, Jacob was born very healthy. Luke loved his little brother and enjoyed having him into our family. Infact it was the five days we were in the hospital that Luke finally got potty trained at five years of age!!!!! It was such a thrill. I think Luke just needed his mommy to be away to become independent. We have absolutely entered the behavior issues with Luke. His IQ is just below 75. I had him co-programed in a healthy preschool and special ed preschool/kindergarten for two years. The structure was great for him. He would go to one in the morning and then the other in the afternoon. Luke is in a self-contained classroom with other children with similar developmental levels. He is mainstreamed in a regular second grade classroom during P.E. I am so thrilled with his placement here in Salt Lake City in the Jordan School District. Spectacular teachers and aides. He doesn't always want to go to school - but we get him on the bus and then he is just fine. He has a difficult time with transitions (going from one activity to another). And he has a difficult time when limits are placed on him. Like bedtime, or nintendo turn taking, etc. etc... That is when we see his agressive behavior. We are definately to the point now where we need to obtain intervention with medications and behavior modification. I have found such a spectacular program here at the University of Utah that specializes with children with neurological genetic disorders. The divorse has been hard for Luke. I remarried seven months ago to a very kind man. His name is Cory Wall. Cory lived in Salt Lake City so we relocated last summer from Yuma Arizona to Salt Lake. Cory has worked to hard to be buds with Luke and has certainly earned his way into his heart. It took a lot of Nintendo and Game Boy playing, going lazer tagging, paint balling and skiing together. I so appreciate Cory and his relationship with Luke and commend him for being so fantastic with such an unique child with Tuberous Sclerosis. Luke enjoys to do lots of things..... Many of the things I mentioned above but also coloring, his family, his dad, Spongebob, snow, snow mobiling, swimming, ice skating and soooo much more. He just doesn't have the sophistication to understand the dynamics of everything. The behaviors are the biggest challenge that we face with Tuberous Sclerosis now. Although I can not possibly tell you how much better I feel knowing that we have expertise and help to tap into. It is so nice to live in a city with such fantastic resources to enrich their lives. We are starting to see more of the angiofibromas on his face. We need to see a Dermatologist. We need to get a new MRI and kidney ultrasound too. He asks about the angiofibromas and one day said "Mom, look at all those dots on my face. I look horrible!" It just breaks my heart to see his beautiful face change. I have stayed active in trying to make a difference in the lives of those with Tuberous Sclerosis and Special Needs. In Yuma, I sat for several years on the Board of a Therapeutic Horseback Riding Program. I raised lots of money for them and also wrote grants for their funding. I now have been asked to be the Intermountain West Tuberous Sclerosis Alliance Chairperson. I am so glad that my life is calm and function now and can once again contribute to make a difference. I will be flying to Washington DC later this month to march for Tuberous Sclerosis. And have an appointment to meet with Senator Orrin Hatch in regards to appropriations for Tuberous Sclerosis Research Funding. We are also planning a walk for Tuberous Sclerosis in the Fall of this year in 2004. Luke has brought so much joy to my life. I am a different person than I could have possibly be without him. I know that I am more patient, kind, loving and understanding than I ever knew was possible. I have also developed talents in fundraising, organizing events and advocating for special needs children. I never knew I had those talents within me. I love my Lukey and will always do what is necessary to enrich his life and help him be an awesome kid and develop spectacular talents himself. One other note.... my mother has ALS and Lou Gherigs. She is in her final stages. I am also trying to help take care of her. My third son Jake when he was 11 months of age suffered a brain injury accident when he was with my x husband on a horse. They fell off and he had a skull fracture, seizures and had to learn everything from holding his head up to drinking from a bottle again. It was devastating. Jacob's speech has been delayed from the accident and we participate in speech therapy with six sessions a month. He is making progress. I also owned a quilt shoppe when I lived in Yuma. I loved it. But now that I am married am once again staying home..... which is what I need to do to help all these people that need me..... I committ to take care of myself to that I can be there for everyone else. 
MARCH 2007There is so much to share with so many years going by. Luke is doing great. We have so many successes!Luke had his first year playing football in 2006. He was in 5th grade and still did not know how to read or count. I enrolled him in football, because he is sooo strong and tough. It has been my greatest accomplishment of the year. I tell you I am going to frame his team jersey. At first he didn’t get it all, but now through repetition he has some football concepts down. The coaches are incredible with him and so are the kids. The kids are so kind and reach out to him in a phenomenal way. When he arrives they say “Hi Luke” and ask him how he is doing. In the beginning it was like Forest Gump, where he would just run and run and never stop – He didn’t understand the edges of the field. But he gradually caught on to the football concepts along with social concepts. His football stance on the line was like a sprinter getting ready to run a race, but now it is just like all the other players. Luke had the most difficult time transitioning from video games or tv to get dressed for practice. I would have to force him to get dressed by laying on him and tickling him. Towards the end of the season I was able to lay the football clothes out in front of him and he gets dressed by himself. In the beginning, he would be the last one coming in from the conditioning run with other kids hanging back with him but now he is usually sixth from last and will sprint the last little bit. I cried the first time I saw the other kids hanging back with him to encourage him to run and get him to do it. It was a glorious feeling knowing I wasn't the only one helping Luke become who he should be. It was incredible to see him take off his helmet and be all sweaty and see him work hard and not stop because he is on a team and all the other kids are doing the same thing. In the beginning of the season, he played just a couple plays each game. He didn’t know the difference between practice and a game, but now he does. Everything that I hoped to accomplish has happened. I had Nick (Luke's older brother) and hired some of Nick's friends in the beginning to shadow him during practice and show him where to go and what to do. I didn't think Luke would appreciate his mother running around out there on the football field with him. Now he goes to practice by himself although either I go and watch him or else Nick or Cory. It has been awesome. I am so grateful to the coaches and team for working with him. We have had several of the kids from the team over to play after school. It is good for him to make friends; now he talks about wanting to go to a new school and make more new friends. I thought the season was a success, but I had no idea what was to unfold. At the second to last game of the season, Brighton was playing Alta(a Brighton rival). Luke was involved in lots of Defensive plays and doing great. We learned there was a conference rule for special needs children to play as the 12th man. The other team was aware that Brighton was using the 12th man rule and that there was a special needs guy on the team and noticed him. They wanted to give him a chance to run the ball so they had the referee approach our coaches with the idea that Luke would be handed off the ball and no one from the Alta team would tackle him. The designated play was to happen after a kickoff and Brighton was on the 50 yard line. The Brighton team got into a huddle on the field to explain to Luke what to do. They handed off the ball to him and he ran and ran and ran looking back over his shoulder to see if someone was going to get him. He ran 60 yards all the way to the goal line. The moment he entered the end zone he spiked the ball and ran to the sidelines. All the kids on both teams rushed him and one of Luke's team mates tried to pick up Luke to "show him off" two times but they fell down. It was the sweetest moment. Luke is soooo proud of himself. I told lots of people about the story but I guess his team mates and all of the Alta parents were telling people too. Somehow from the Alta team shared the story with ABC Channel 4 News and they did a news segment on it. The next morning I got a call from Inside Edition. They spent four hours filming the story and aired it on Friday, October 27, 2006 at 2:30 pm Salt Lake City time. Please note that I did not take the video.... I had no camcorder with me... but the video you are seeing in the segment is from a family on the Alta team. Thank you for sharing! I am so grateful that we can raise Luke in a community and not just a home. It has been phenomenal to watch Luke's his coaches and teammates work with him. This sure is not just Luke's story but everyone's story. Inside Edition filmed Luke's three coaches, Alta's three coaches and about fifteen of his teammates today. Luke watched the above Channel 4 News video six times in a row and after the fourth time turned to me and said "Mom, I rock". He does rock and is the greatest kid. He is such an awesome dude and my sweet little hero. Luke's teacher called on Monday to say whatever we are doing with him is working because he has had no behavior problems this year at school. Jake started kindergarten and is doing well. He is a smart little boy and very motivated to learn. Nick is playing football too and his team is now going to the playoffs. He is a great kid and has worked hard to help Luke with his football. Cory's girls are all doing fantastic with Jenny starting college, Natalie playing soccer and the clarinet and Emily playing the violin. Luke's maternal grandmother died of ALS. Our family was involved in the primary caretaking of grandma Deanna. Luke loved to be with Grandma Deanna all the way to the very end. He would love to feed her, help her talk with her ABC board, move her around, get her things and much more. He loved to take care of her. Luke misses her very much and talks about her quite often. He'll talk about that we need to call her or visit her with his Nintendo Game Cube system. She loved to play games with him. She was a special education teacher for 25 years and had an extremely special connection with Luke. I am working on my master’s degree in Healthcare Administration at Weber State University. It is a full time program and very busy. Thanks for all your love through the years.... I hope this ray of sunshine "Brightons" your day. YOU CAN WATCH LUKE'S FOOTBALL TOUCHDOWN VIDEO at http://www.youtube.com/watch?v=xwjGqOHtj9c DECEMBER 2007Christmas with Luke is very fun. It is filled with enthusiasm and excitment for the holidays. Above is a photo of our combined family this year for Christmas which includes our three dogs and bird "Ricky".
March 2008
December 2008I finished my Master's Degree in Healthcare Administration. Looking back, I just don't know how I did it. There was some kind of power deep within me. My husband, Cory, helped soooo much. I couldn't have done it without him. Plastic Surgery was incredible and Dr. Mausner is by far Luke's most favorite doctor. We combined the surgery with a back east trip with all six kids and visited Washington DC, Gettysburg, My father in Pennsylvania, Niagara Falls, Palmyra New York, New York City and Philadelphia. We had a blast - it was a lot of fun for everyone. Let me get back to the plastic surgery. We traveled all the way from Salt Lake City to Maryland because Dr. Mausner really is the best at this and has a nitch treating Tuberous Sclerosis individuals. He is an incredible man. His technique of combining a pulse dye lazer and the CO2 lazer at the same time under anesthesia give these kids about a two year outcome. He is a masterful artist. I went from Dermatologist to Plastic Surgeon here in Salt Lake and no one was able to combine the two lazer with anesthsia. They were willing to try it but would have to rent a lazer to get both in the same room. The pulse dye lazer is good at great the new tiny red angiofibromas on their face and the CO2 lazer is good for getting the thicker white angiofibromas removed.
Dr. Mark Mausner's website is http://www.thebeautydoctor.com/tuberous.shtml . His address is 6410 Rockledge Drive Bethesda, MD 20817 (301) 564-4466 Luke had an incredible result with his procedure. The anesthesiologist sang the Pooh Bear Song as they gased him to sleep to receive the procedure. It was great. The recovery wasn't too bad - just a couple of weeks. We had to put Aquaphor on his face all the time and it was a little messy but extremely manageable and doesn't stain anything. Below are before and after photos of Luke and his procedure. You will notice on Luke's face hundreds of tiny angiofibromas with red dots and then some that are older and thickened a hard layer. These are removed along with his fingernail tumors that are typical with Tuberous Sclerosis too.
After the surgery..... In Central Park... He doesn't look very happy but we had a great time.
NOVEMBER 2009Well it has been a good year, although the hormones are starting to kick in so it is hard to keep up with the behavior changes and medications. He is bigger and stronger, so we subsequently have to think of creative ways to redirect behavior before things escalate. The picture above is of Luke and I at the Lion King Play in Las Vegas. It was a dream come true to take him. He loved the movie as a little boy and would ask me for "Lasagne", I would tell him I didn't have any and then figured out his was referring to a movie. We went through the movies one by one and "Lasagne" was the Lion King... I was so exhausted from finding "Lasagna" that I sat down and watched it... the music in the begining of the movie started out with "aaaaahhhhh lasgna la beatcha a bomb".... I then learned that "lasagna" was actually the Lion King. It was rewarding to take him to the live performance of it! Luke has a giant cell astrocytoma now in his brain discovered through routine MRIs. He is not Asymptomatic at this time and is doing well. We are definately having the headaches and vomiting spells... but he has always had those. We just have to treat it with motrin before he gets to the throwing up stage. We saw the neurosurgeon, Dr. Kestle, on November 2nd and he doesn't feel that surgery is warrented at this time. He referred us to a Pediatric Neuro-Oncologist that is possibly going to prescribe rapamyacin for him which will shrink the tumor. Not only will it shrink the giant cell astrocytoma but every other tumor in his body too. I stopped working at my husband's office in that I have to be plugged in 300% when Luke gets home from school... there is no rest for the weary. But I feel this enables me to give Luke my best with his behavior and give one on one attention to his siblings. They need me so much too. I spend time during the day managing the household, medical visits, phone calls and other necessary items that I need to do. I am so grateful for Dr. Bilder at the University of Utah, Neurobehavior Home Program that is our psychiatrist, Stephanie O'Brian our behaviorlist and Edna Wilcok the psychologist. They are helping us so much. It is bewildering at times deciding what is the best way to react to his behaviors and I am so grateful to the team of people that give me the confidence in our approaches. We have finished our spread of routine visits between the MRI, kidney ultrasound,nephrologist, neurologist, psychiatrist, psychologist, pediatrician, pediatric neuro-oncologist, blood draws, cardiologist and more.... It is a lot of work to keep an eye on these dudes and make sure everything is operating okay. We are waiting to hear back from the oncologist about the medication at this time. We are to repeat his MRI in three months now. All I can say is that I am grateful that we are living in a day and age of modern medicine and have so many services and opportunities that didn't even exist when Luke was born. I know that we can get through anything and survive well. It is interesting having Luke as a teenager now. I find myself reminded that he just doesn't fit in every so often. Silly little scenarios that are the reminders but it made me realize that I grieved Luke have tuberous sclerosis as a baby and what his future possibly held. But now that we are in the midst of seeing his pains that things are not quite right socially it hurts and I realize that I need to give myself a moment to grieve for his loses. I sure love my Luke and now that he is a teenager, I find that he really responds and appreciates one on one time. His favorite things to do are going to dinner at Chillis, going to the movies, playing soccer and more. It may be a tremendous amount of work to get him dressed and ready for soccer,(his shoes may be too sqeeky) but when I get him out there on the field hanging out with great kids, running around and exercizing, it brings tears to my eyes and I know the work is all worth it. I am grateful to have my buddy and not take life for granted but enjoy every moment with him, my other children and my husband. Family is just so important.
A Mother's Journal is also included under Accepting TSC which includes an indepth look at our thoughts and feelings as they were journaled and experienced. Double click on the photo to the right of this page to go to A Mother's Journal. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
