Updated March 2008

March 8 1996
Dear Journal
Things are fine. I am pregnant with Baby Luke. Due April 22nd. We have had some adventures with this pregnancy. We got pregnant during our trip to the French West Indies on Guadeloupe Island where Todd had served his mission ten years earlier for the Church of Jesus Christ of Latter-day Saints.
Everything was well. I was more nauseated than my pregnancy with Nicholas. Only actually threw up three times, but I was sick for the entire month of September.

So now it is March - I went in for another ultrasound due to extra amniotic fluid. They took a hard look at the heart and found two tumors in the left ventricle. We aren’t sure what this means yet. We are seeing some specialists soon and will hopefully have more information. We have complete faith in Heavenly Father and that things will work out the way they need to. We have a wonderful support network that we are leaning on and enjoy the support of our little family.

March 13 1996
Dear Journal
Well we had another ultrasound on Monday. Not very good news. Baby Luke’s two tumors enlarged and two more appeared. They are in the left and right ventricles with one close to a valve. They think it is something called rhabdomyomas. They often resolve by themselves as the baby grows. But if they continue to grow and pop up then they could interfere with heart function. They are now monitoring him twice a week on ultrasound.

We don’t know what lies ahead. Luke may be just fine and then we’ll have so much to be grateful for and relish with both of our sons. God may want a miracle performed in behalf of this baby to strengthen our and other people’s faith. He may need to take this child to return to him in the near future. Whatever the outcome, we have complete faith in God’s will and know with a surety that our lives and Baby Luke’s life is in God’s hands. We know he will do what is best for us all. I am so grateful for the knowledge of the Plan of Salvation.

April 4 1996
Dear Journal
Well my beautiful Baby Luke is laying next to me sleeping in his cradle. He was born on March 22, 1996 at 5:00 am. Nicholas loves him so much. A very natural and automatic relationship between them immediately created. It was so fascinating to witness.

Well let’s see - let me start by saying the week of March 17th I became very sick with an upper respiratory infection and Luke’s heart was showing signs of distress. We were going in for so many tests. By Thursday, his heart beat decelled twice and they admitted me to Labor and Delivery. It was concluded that he needed to be delivered based on the possibility of fluid around his heart and the stress on his heart. We decided to try a vaginal delivery (I think they were just humoring me), which was later determined unsafe and a C-section was performed. Our doctors were absolutely wonderful. We were so afraid that something would happen to our little Luke. A moment of levity was delivered to a very tense time when they were wheeling me to the Operating Room. The bed wouldn’t move because Nicholas had been to the room earlier and had taped the wheels on the bed. Thank you Nicholas for the gift of humor.

We were fortunate to see Baby Luke right after he was born. Todd brought him to me and we cried and loved him. The doctors whisked him away to start their work up. I went to recovery for anesthesia and left there within one hour to sit in a wheel chair and go be with our baby in ICU.

Luke Matthew was delivered at 6lbs 5 oz. 36 weeks gestation. He was all hooked up to the monitors and we were able to touch him that first day. Test results kept coming back indicating that he was doing great. The possibility of Tuberous Sclerosis was trying to be ruled out. The next day he was off oxygen and we were able to hold and nurse him.

Nicholas saw Luke a couple hours after he was born and immediately loved him and was completely fascinated by him. That love has continued to blossom and develop.

Each day Luke passed his tests with flying colors. There was no distress in his heart or blood flow nor anything else to support the notion of Tuberous Sclerosis. So…. On Sunday the 24th, we were privileged enough to take him home. It was wonderful to be our little family with two boys.

Todd and I are completely enmeshed. We love each other so much. Todd took two weeks off. One week for vacation and another week for paternity leave. Today is his first day back to work. Taking Luke to church this last Sunday was such a celebration. We love him so much and feel privileged to be blessed with his spirit in our lives.

Luke is a very beautiful baby with lots of blond hair, a sweet serene face and looks just like Todd. He is gorgeous. He definitely is starting to have more wakeful periods. We love talking to him and looking at him. He is such an easy baby.

We have had several doctor appointments for him and he is doing great. In fact the largest tumor in his heart in now smaller. It was supposed that my hormone production was stimulating the growth of his tumors. We are so grateful that he was delivered a month early.

October 23 1996
Dear Journal
I am extremely exhausted but feel that I need to journal what is happening. Luke had his first seizure yesterday. This opens up a new world for us in relation to his illness with Tuberous Sclerosis. I am very leery and uncertain as to what lies ahead for us in the future. I feel so strongly, that Luke was very specifically sent to Todd and I to care for. I know if Todd and I were able to see the eternal picture that no matter what challenges lay in our path that we want the privilege of caring for our Luke Matthew. I am also certain that Nicholas is not his brother by chance that he is meant to be Luke’s big brother. They truly have such an unusual bond and connection. I have to always remember that the real reason that we have been given our children to take care of here on Earth are to teach them of the Gospel and that Christ is their Savior and help them to return back to their Heavenly Father. I know that God loves us and is so compassionate in preparing us for the future that lies ahead. I lean upon the scripture in 1 Corinthians 10:13 that I will be able to bear what ever is in our path. Well I better go to sleep so I have my strength to be the best mommy I can be tomorrow.

October 24th, 1996
Dear Journal
Everyone has extended such a sweet outpouring of love and support on behalf of our family. Flowers, meals, phone calls, notes and love from friends have filled our home at this time of uncertainty. Luke is struggling, we aren’t sure if it is the medication for the seizures or his cold. The seizure medication can make them extremely irritable.
Our Neurologist told us that we have to personally page him every day to let him know how Luke is adapting to the medication and inform him of any changes. He is such a caring physician. He also called us the first evening to see how Luke was doing as also his Pediatrician did too. It is so nice to have people that care. Our Neurologist spent at least two hours with us at that first visit. Not only meeting Luke’s physical needs but also Todd and my emotional needs.

I am worried about Nicholas and the lack of my resources as I am working through all of this uncertainty. Todd and I are solidified together resolved to combat whatever may come in the path of our children.

October 25th, 1996
Dear Journal
Today is my birthday. Everyone has been so kind. Lots of cards, phone calls, and gifts. We are really corresponding with all of our family with E-mail. I am so glad that I had canceled our trip to Pennsylvania last week. Luke’s seizure would have happened there.

I might as well explain everything that happened. Luke was preliminarily diagnosed with Tuberous Sclerosis after hypomelanotic macules appeared at two months of age. We got back from our Arizona trip on Tuesday. This last Sunday when we were getting ready for church, we noticed that Luke had a fever of 102.7. I was impressed that it was not a time to haul him all over church from room to room when he was not feeling good. I simply stayed home, snuggling, loving and meeting his needs. He still maintained a fever and on Monday evening we started him on antibiotics. Tuesday, he was feeling better. Nicholas was asleep and Luke had just woken up from a very long nap (3-4 hours). I was sitting on the floor leaning against the couch talking and visiting with him. He very deliberately raised his arms and tensed up and then released. Repeating this 6 to 8 times. Then he collapsed on my chest and was like a noodle. I talked to him and thought this behavior was abnormal. It concerned me enough that I immediately paged Todd with 1111’s indicating an emergency. He wrapped things up at the hospital and quickly came home. Luke in the mean time had fallen into another very deep sleep. I really second guessed myself, it could have been almost as if he was pushing and concentrating very hard to pass gas. In fact I had even checked him right after to see if he had a poopy diaper. As I thought about it, I was sure that I had witnessed a seizure. We took him in to his Pediatrician, who immediately started to personally arrange visits with Neurology, EEG and CAT Scan. Our appointment was made with Pedi-Neurology.

After the EEG, we visited with our Neurologist who confirmed that Luke was indeed having seizure activity. Todd and I knew exactly what this meant. It was difficult to accept for our son. But we were so grateful to have caught the seizures so early. We feel like they just barely started due to the fact that he is so developmentally on target with sitting up, holding bottle, etc… We actually feel very fortunate to have a chance to intervene and not allow him to be dazed by the seizures. Several intimate friends of mine in Galveston all delivered their babies (5) the same week Luke was born. Even with Luke having had been delivered a month early, we have all of these babies to track his development which is right on target. There are so many blessings of having so many babies to use as a marker with Luke. I know that God is in control of our lives and loves us and has a plan even though I may not understand all of the implications. I am confident that Luke will carry out God's plan for him no matter what it may be. And it is my responsibility to help him do that.

October 26th 1996
Dear Journal
I have to force myself to think of my blessings today. It has been hard. But I focus on the positive. Todd got me a new cam-corder for my birthday. What a great gift. Our old one was such a beast and so cumbersome and the only way we could use it was if we plugged it in. I updated Lukey’s scrapbook. What a sweet treat to celebrate his life at this time. And then I filmed the scrapbook pages with Lullaby music playing in the background that we sing to him often. It is very nice. Then I started filming Luke and big brother Nick. The two of them are so sweet. Luke really responds to music. He is so comforted by me holding and singing to him. I sing as if I were performing to an audience knowing that the sweetest member is my son. I love the words of the music.

Todd’s mom recommended that we let Nicholas know what is going on and I think that is good advise. Things are tense, there is definitely stress in this time of anxiety. We are watching Luke so carefully and administering his medications. It also lets Nicholas know that if there was anything wrong with him that he can be confident that we would take care of him in the same way. I am using all of my strength to be patient. I pray so earnestly for strength to bare what is in the future. Luke seems to be feeling better. Our Neurologist did not want to do a MRI because Luke was not feeling well. In order to perform the MRI they have to put him under anesthesia and intubation would not be good for a baby with congested sinuses, irritated lungs and swollen throat. He said if it were his grandchild, he would not allow us. We want him to be better for next Tuesday to have his MRI and take a peek then.

Sunday, October 27th 1996
Dear Journal
Yesterday we attended a Halloween Party. Luke is doing very well now that he is getting over his cold. Wow we sure were getting up a lot with him. It is so nice that things are settling down. It was also very nice to go to church and partake of the sacrament.

October 28th 1996
Dear Journal
This has been hard accepting possible impairment for our child. I mourn a part of my life as I mourn Luke's. I am just surviving right now and getting through this. It is hard to watch my friends carry on their ordinary lives doing the things that they are comfortable with. This is such an entirely new world for us. Will all my energy go to this? I am still just praying for strength. The reality has set in that even though there are a lot of people that love us, this is our struggle that only we can bear.

October 29th 1996
Dear Journal
We had another EEG, our Neurologist said that the seizure activity is looking better although we need to increase the dose. We were so disappointed. We thought that since Luke was still progressing developmentally that there was no more seizure activity. I wish I could talk to other TS parents to see what realistic expectations we should have or just even be aware of how this routine is. This is such a foreign world. I don’t know what to pray or hope for. I always want to pray righteous prayers. I only want to request what would be the Lord’s will. What are realistic expectations to have? Will we face autism? My heart wrenches for Luke and the distress he will experience in his life from the afflictions of Tuberous Sclerosis.

Luke is fine, although is beginning to have side effects of this medication with this last dosage increase. He is very nervous; kicks, talks and wiggles constantly. It is so sad to see a nervous baby, although I know we need to stop the seizures so we are proceeding forward.

I am disappointed that our Neurologist did not feel that he was well enough to have his MRI and anesthesia. He said that the results of the MRI will not change our treatment plan it will simply act as a marker to compare to future MRI scans. I guess I am so anxious to know more for my son. But our Neurologist is right, it is an unnecessary risk. I am glad that he cares. Todd agrees with him. I am learning so much. We are not going to administer Luke’s vaccinations at this time they will be postponed.

I started reading a LDS book titled Not to Worry Mom, I’m Okay. It is so good. It is written by a mother of a child with Cystic Fibrosis. It is so comforting to read and understand the emotionality that I am experiencing is so normal. And just a phase similar to grieving. We are canceling the trip to Pennsylvania that we postponed last week. Things are not stable enough.

Todd has encouraged me to go ahead and continue our family tradition of having a big Halloween Party for family friends. I am finding that I am just simply going to have to get help. I will arrange for someone to come cut the grass and clean my home. I have always been so proud of the fact that the clean home that I have is a result of my own work not others, but I need help. Oh well, pride can also be a vise and right now I need the peace of a clean and orderly home than ever before.

November 1st, 1996
Dear Journal
Well Todd only has a couple days before his once a year Orthopedic In-Training Board Exam. This is always a very stressful time of the year with that looming ahead of us. But with everything else is it will be so nice to have that over with on Saturday and have more of Todd’s resources.

Our Halloween Party was very nice. I think the best part is having such a clean home and manicured yard. I am starting to be capable of accomplishing things again. For Christmas I was going to make all those quilted tree skirts for everyone; I am not too confident of that anymore. We’ll see. Luke is doing very well. His body has acclimated to the medication. He is no longer nervous and we don’t see any apparent side effects at all. What a relief. I hope this medication is working. I don’t want his little mind suffering from any seizures and not know. We still have yet to see an infantile spasm. They say it can be like a stare or blink; which are very common for babies to do.

November 4th, 1996
Dear Journal
I finished the book I was reading. It was sooooo good. I groaned to the Lord on Luke’s behalf. I prayed for the first time for his little body and mind to be preserved. I don’t know if it is the Lord’s will, but it is what I am praying for. I feel good about it. I have never prayed so sincerely and earnestly in my entire life. Never. My legs were numb. Oh please Lord, hear my prayer. I pray for those researching for Tuberous Sclerosis that they will be able to find a cure. Bless those dedicated scientists.

Todd explained to me the research outcome on Cystic Fibrosis. He said that after they found the gene for Cystic Fibrosis that they then were able to identify the protein that was not being produced by their DNA and was then able to administer genetic therapy. WOW!! I didn’t realize that therapy was a possibilty for Luke and Tuberous Sclerosis. It doesn't exist now, but I have never been so completely thrilled about research. I have always seen cancer, AIDs and other research interests, but never have I been so intensely interested in something in my entire life. This is something that affects the comfort and quality of life for my son. I finally feel like I have a purpose rather than blowing in the wind without any direction. This is something I can advocate for!!! This is something I can dive into and do something about. Wow, it is so nice to have an obsession again. I have also decided after reading that book. That I want to share our story to strengthen others too. In the book, the young man with C/F lived such a good productive life. It may have been painful and difficult but that just made the sweetness all the more intense. I will mourn if I have to witness my child go through such an ordeal. I would have to mourn to watch my child’s body and mind deteriorate in front of my eyes. That would perhaps be the greatest trial.

It is so nice to read the Physicians Desk Reference and understand absolutely all of the side effects of Tranxene that Luke might be encountering. Among the many is dry mouth. He actually appears to have a dry mouth. I am so grateful to be aware to help him through this. I have so many questions for our Neurologist tomorrow. It will be good to have them answered. I have also contacted the Early Childhood Intervention Program (a federally mandated program for infants to three years old). The name of the program in Galveston is Project Launch. They come and evaluate your child and stimulate him developmentally. I will be so eager to learn more about stimulating Luke and monitoring his progress. I refuse to be idle about this. I want to be a deliberate parent for both of my boys.

November 5th 1996
Dear Journal
Luke’s EEG is displaying more normal brain wave activity. There are still some minor concerns. We are to keep him on the same dosage of medication. We asked him questions about missing a dose or administering one late. Our Neurologist also explained that Luke should be on this medication for a minimum of two years after he shows normal EEG patterns. I wish I knew more people to talk to about this. We are accessing the Internet. It is phenomenal to see the resources there. I am learning so much. I am hoping to link up with some other TSC parents on the Internet.

I am now leaving the surviving phase of accepting a child’s special needs and entering the phase of searching for information and comfort. I called our Tuberous Sclerosis Genetics Physician today. I had some difficult questions to ask and knew of no one else more experienced in a broader sense with Tuberous Sclerosis. I wanted to know what makes a child have a shorten life span with TS. What are the relationships between infantile seizures and mental impairment? I wanted to know is the autism relationship full-blown or only related to the fact that some TS children do not speak? She was so kind to return my call. I felt silly calling her after that but I asked my questions and was grateful that she was so willing to take the time to call me back. I hope I am not too much maintenance for her. I am so excited about the research that she is doing.

There are two known markers that carry Tuberous Sclerosis one was found on Chromosome 9 and they believe the protein Tuberin is involved. Before any genetic therapy can completely progress the other marker on chromosome 16 needs to be more completely understood. She and approximately eight other researchers are doing this kind of specific TSC research around the world. She has a huge NIH grant funding this. I pray she finds it. Oh I pray someone will. I feel confident the "therapy" will come during Luke’s lifetime, I just pray that his mind and body will be preserved until then.

Well her answers were: The shorten life span related to TS involves more of the aspects of severe mental retardation, or if the heart rhabdomyomas interfere before they begin to reduce, or kidney failure. I was curious how severe mental retardation could shorten someone’s life. She explained that the severely mentally handicapped do not use all of their body functions for example, swallowing, exercising and those complications shorten their life span. She said that autism can be full blown or just present autistic behavior lack the inability to speak. She said that the infantile spasms statistically have a direct relationship with mental impairment. That could be from the seizures themselves or the location and size of the tumors on the brain and what they are affecting. Well I guess I knew these things but wanted someone to tell them to me. It is good to know the best and worse.

November 6th 1996
Dear Journal
I have so been enjoying the technology of the computer. I have decided to make a home page dedicating it to Luke and sharing his story. But more than just sharing his story… I want to make it available to other families to share their stories also. I feel like this will help me heal as I do something constructive to benefit families affected by Tuberous Sclerosis. I know that we will be strengthened by reading those stories and understand what other families are going through. The computer technology is way over my head, but I am going to learn how to do it!

November 9th, 1996
Dear Journal
All this time my prayers have been begging and pleading to the Lord to strengthen me. I just realized that through the act of doing these things that I have been strengthened. I truly have. I am so excited to be making and planning contributions to Tuberous Sclerosis. I have decided to embark on a very hefty fund-raising project in the Spring. I think March will be a good time. I have some very fantastic ideas. I can’t wait to make it happen. Right now I am concentrating on the Home Page. I hope other families will share their stories. I have been corresponding with several TSC families through the TSC E-mail list. It is so wonderful to lean on the experience of them, learn of their insights and know we are going through the same thing. I am dedicating my life to Tuberous Sclerosis, no matter what degree of affliction that Luke has from this disorder. I can make my body go 500% and often unconsciencely consume myself in some very unmerited projects. This effort and time will be worthy. Worthy of my son and possibly help him or other children or adults affected by TSC. Whatever I am able to contribute I will, because I know of all places this is the best place to dedicate myself along with my family and church. I am a very passionate person but to have that passion sealed with purpose is phenomenal. I feel as if this is definitely one of the purposes in my life. I have found this resolve to be so healing to my soul.

The statistic that 80% of marriages that have a special needs child resulted in divorce blew me away. Wow… Todd and I have no room for conflict. We will have high maintenance, but that is good and what any couple should do. We also feel so strongly that we need to eliminate any unnecessary stress in our life e.g./ financial etc… If anyone needs to exercise, eat healthy, balance our responsibilities, etc… then we need to NOW.

One last thought for today. I was really struggling with the concept of hope. I didn’t know what to hope for or if I should only to be disappointed in the future. But I have some thoughts on that. First of all, Todd and I were driving the van extremely low on gas. I said to Todd, "There is no way that we will actually make it to the gas station. Why even have hope." He said, "Deanna it only makes the ride a little nicer". I few days later I was reading a book and came across the thoughts of Joseph in Egypt from the Bible. Of anyone to be discouraged throughout his life: he was beaten and sold as a slave by his brothers, imprisoned, accused of falsehood, imprisoned a second time only to become the chief servant in Potiphar’s house, chief among prisoners, dream interpreter, and Pharaoh over the land. Our challenges do not compare to his, but my point is that he never allowed the circumstances of his life to overtake him and give up. He courageously went forward being faithful and look at what he was able to accomplish.

Another quote that I read was by Ralph Waldo Emerson: "Every great and commanding moment in the annals of the world is the triumph of some enthusiasm…. Nothing was ever achieved without enthusiasm." May my enthusiasm never be squaltered.

December 16th, 1996
We have come to accept Tuberous Sclerosis in our lives and have learned that this is not the worst thing that could happen to us. We are happy... happy to have each other and our boys. There are many people that have special needs children. As I see that they have the strength, I have confidence that we will also have the strength. I have learned so much this last year. So much. I now know what I am made of and know there is more in me than I could possibly imagine. I know we can care for Luke and be good parents. We will care for his confidence and self-esteem the same way we will care for Nick's.

It is thought that Luke's seizures have been controlled by the Tranxene. We are just thrilled. We are eagerly awaiting for him to crawl. Luke is such a delight and joy. His smile melts your heart. I am his mommy. He looks to me for his nuturing. I love to be there for him. I pray that he will not suffer, but know that God will give all of us the necessary strength.

Todd and I have decided to host a benefit for Tuberous Sclerosis in the Galveston/Houston area. The support has been so encouraging. The benefit will consist of a semi-formal dinner at $40/plate with a silent jewelry auction at Moody Garden's Ballroom in Galveston, TX. Anyone who is interested will be invited, along with many that we will solicit to teach them about Tuberous Sclerosis. To kick off the dinner, 4000 raffle tickets will be sold at $25/tickets for a vehicle raffle which will be a Ford Explorer. I will also speak to many local area groups to increase awareness about the benefit and Tuberous Sclerosis. The Galveston community is being so supportive. The goals of the benefit are to increase awareness about TS and raise money which will be contributed to NTSA. The money will be earmarked as 80% for research of which 25% will be for a researcher at UTMB and 10% for the first National Parents Symposium which will be available through tele-conferencing and 10% dedicated to underwrite the first book written about Tuberous Sclerosis for families. With the support of all the families, I am confident it will be a success.

Todd and I feel that after caring for our family, we need to be advocates for Tuberous Sclerosis and make a difference. I know we will not save the cause but is where we need to invest our energy.

May 1997
The benefit is now completed. It was an extreme quantity of work but very fruitful. I never worked so hard in my entire life. The Galveston community was so generous in supporting the cause for Tuberous Sclerosis. We shared our story and the children's stories affected by TS and everyone wanted nothing but to help. There are so many good people out there. People that have absolutely no attachment to TS and make small and significant contributions. The volunteers, steering committee and honorary committee will forever be etched in my mind. We netted over $70,000 and grossed over $90,000.

You can email Deanna with any of your thoughts and feelings at deannadawn@lukets.org.

Luke's Tuberous Sclerosis Page