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Kylie's Page 
Welcome to Kylie's web page!
We thought this would be a good way to keep family and friends updated on Kylie's progress over the next few months.
Please sign the guestbook if you have time. If you would like to, please leave a message for Kylie or one of the rest of us!
"We do not remember days, but moments. Life moves too fast, so enjoy your precious moments."
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you..." Isaiah 41:10
--- Kylie's Prayer Pager ---
Dial 214-332-1118, wait for beep, then enter your zip code and press "#". This will send Kylie a page letting her know that someone just said a prayer for her.
Journal
Wednesday August 10, 2005 8:00 PM CST Today is Kylie's birthday and we got the best birthday present ever from her doctor today...Her latest MRI scans look great and there is no change since her surgery! Kylie had a good day in spite of spending most of it in the doctor's offices or in the car. The doctor and nurses in the Child and Adolescent Center brought her a birthday present and sang Happy Birthday to her. She was so surprised! One of the few times we've seen Kylie so embarrassed. We are so thankful to God and all the doctor's at MD Anderson (and Memorial Hermann).
Kylie is cleared for another 3 months or so now. She will go back sometime soon for a "sleep deprivation" EEG and post-surgery neuro-psychological evaluation to clinically verify the wonderful results of the surgery that we've seen every day. The EEG is so that the doctors can make sure that her seizure activity is gone or at least has lessened. The neuro-psych test is a repeat of the test done just prior to her surgery. This will tell the doctors whether or not there has been any neurological or psychological changes due to the surgery. We expect great results from these tests just based on how good Kylie is doing post-surgery.
We are so thankful for Kylie's wonderful news. But we ask you to continue to pray for our RMH friends: Wesley (Leukemia), Parker (non-Hodgkins Lymphoma), Caroline (Sarcoma), Neal (Leukemia), Jackie (malignant brain tumor), and the list goes on. Pray for these brave kids and their families. They have such a tough battle to fight. As we mentioned last post, the Light the Night walk season is coming up and is a great way to support the Leukemia and Lymphoma Society to help find a cure for cancer. They need our help.
God bless you and thank you so much for your prayers for Kylie.
Friday July 22, 2005 8:30 PM CST
Hello again from Kylie and family!
Kylie is doing so awesome...Praise God! She has healed so well and has had no seizure activity. Her hair has grown back to where you can barely see her scar. She is still not allowed to do much physical activity and she has been so good about following "her rules". But we know she is feeling better because she is starting to try to push little by little to do more. Thanks to God for that!
We saw the seizure doctor in June and Kylie will need to stay on the seizure medication for another year. If she is still seizure free next summer she will get to stop the seizure meds. Her next MRI and visit with the surgeon will be on her birthday in August. We are expecting more wonderful news and a great birthday present for her!
Thank you so much to those of you who so faithfully have prayed for Kylie. It is hard to explain to you the full impact this has had on Kylie (and us). She is young but she understands the power of prayer. We thank you for praying and we thank God for Kylie's healing.
Please continue to pray hard for our friends that we met at the RMH...Parker, Wesley, Caroline, Neal, Jackie, and so many other great kids. They need our prayers and our support. The Leukemia & Lymphoma Society (LLS) is getting ready for their "Light the Night" walk season. If you can support LLS by walking or volunteering, please do so. There are so many people fighting cancer. It is such a terrible disease. Please do what you can to help fight this fight.
God Bless you all...
Monday May 30, 2005 1:00 AM CST
Hello to everyone. It has been awhile since we last updated the page (check out the new photos), so we just wanted to give everyone a quick update to let you know how Kylie is progressing. Well, the answer is great! She has pretty much fully recovered at this point, at least from outward appearances. She has not had any recurrence of the seizure activities she was experiencing before her surgery, so we are breathing a huge sigh of relief. Her stamina is back, and she has pretty much returned to the same "Kylie" she has always been. We continue to thank God for answering all the prayers that have been said on behalf of Kylie, and for all the wonderful people who have said those prayers and touched our lives.
Kylie's hair still has a ways to grow out, but it is long enough that it covers her incision, and blends in with the rest of her long hair that it makes it really difficult to see her scar.
The challenging part remains her internal healing, as this will take up to 6 months for complete recovery. And on top of that, the doctor told her to "hang low" for the next year just to be on the safe side. So, with summer here, and Kylie just naturally loving to be outside, it is going to be difficult to stick to the indoor activities which minimize her risk of any head injuries. In the long run, this year will fly by, but trying to tell a 6 year old to "not have any fun" is a hard thing to do. She has so much energy, and enjoys life so much, that we feel for her. But you know, getting through this next year will be nothing considering what she has already been through. We are just so proud of her, and we love her soooo much! She is a true blessing in our lives, and God has been so wonderful in caring for, and healing, our little angel.
We go back to see the seizure specialist (Dr. Clarke) in a couple of weeks, and hopefully he will tell us Kylie can stop taking the seizure drug she is on. Then in July, we have a follow-up MRI and visit with Dr. Lang (her surgeon). Given her progress, we expect a glowing report.
We are looking forward to seeing some of the great friends we made in Houston when we go down in June, and we ask that you continue to pray for Parker, Wesley, Caroline, Neal, Jackie and Victor. These kids are true inspirations, and they are our heroes.
Thanks once again for all your prayers, thoughts, and kind words and actions. We have been truly blessed.
We hope you all have a wonderful, safe and healthy summer.
Tuesday April 25, 2005 2:30 PM CST
Just a quick update on Kylie's progress...
Kylie is doing great and she continues to improve everyday. Today she began the process of "easing" back into school a week ahead of schedule! She went to school for a couple of hours and she was SO happy to see her classmates, her teachers (especially Mrs. Borchert) and her friend, Ashleigh. Kylie loves LCS!
This past Saturday, we were able to see one of Kylie's new friends from the RMH, Parker and his family. Parker is a 6-year-old who is courageously battling non-Hodgkin's Lymphoma. He and his wonderful family are from the Dallas area and we were so glad to see them and to walk with them at the Heroes For Children (HFC) 1K/5K. HFC is a great organization that helps families in many different ways who have children suffering from cancer. You can read about HFC and how it was founded at www.heroesforchildren.org.
Thank you again to each of you for the absolutely amazing support that you have provided to us over the last few months. Kylie has read every note on the website and every card that has been sent. She has played with games, color books, and crafts that she was so privileged to receive from so many different friends and family. It will be at least 3 months before she can do any physical activities and a year before she can return to much of any kind of sports so she will continue to spend lots of time indoors playing board games and working on arts and crafts. The wonderful gifts have made this time fun for her! Lastly, thank you for every prayer page. Just knowing that someone is saying a prayer for you provides such encouragement. We are so blessed to have had so many people praying for Kylie. Thank you all.
We will continue to pray for and ask your prayers for Kylie's friends from the RMH including Parker, Wesley, Caroline, Neal, Jackie and Victor. These are such wonderful, brave kids.
God Bless all and have a great week!
Sunday April 17, 2005 11:30 PM CST
Hello everyone,
We are all so happy to be back home now. Kylie is doing fantastic! As of today, she has been 10 days with no seizure activity! We have been so totally blessed to have the wonderful report last week and, as the doctors had hoped, the seizures may have been cured also. We are praising God!
It will be about a year for complete physical healing but with the exception of some fatigue and headaches she is quickly returning to her old self. She will go back to Houston in 3 months, and then again 6 months later, for follow up MRIs to be sure that nothing abnormal returns.
One very interesting thing also happened during the doctor's visit on the 15th. The doctor usually reviews the films from Kylie's latest MRI with us. The pictures are taken in approximately 5mm slices from the top of the brain to the bottom. This time the doctor was showing us the MRI pictures in order to show that where there had been a white mass before the surgery there was now a "black hole".
Then the doctor and the RN talked between themselves about showing us "the cross". The doctor then said he didn't know if we were religious or not but he had something to show us that "we might find interesting". In the MRI image above where the black hole is now, there was what appears to be the image of a Cross! The doctor said they didn't really know what it was. They guessed it was some type of shadow from something but he wasn't sure what. I guess we can never be sure of the source of this "anomaly" but we certainly believe that God was watching over Kylie.
THANK YOU SO MUCH for all the thoughts and prayers, prayer pages, cards, and love notes for Kylie. She was given so much courage just knowing people were thinking of and praying for her and by believing that "The Lord is With Me Always".
Our joy is only dampened by knowing there are so many others who have not had the wonderful news we have had over the last 2 weeks. We met so many great kids at the RMH like Caroline from Argyle, Neil from Carrollton, Parker from Mesquite, Wesley from Alabama, and Jackie and Victor from El Paso. These kids are fighting so hard and yet continue to smile and just be kids. We will be praying for each of these brave kids and their families every day.
God Bless All!
Friday April 15, 2005 11:30 AM CST
Hallelujah!!! We just returned from Kylie's appointment, and received the best news possible. The pathology report came back and indicated that the tumor was benign. We know that God has blessed us, and has been watching over Kylie these last few months. Kylie also got her stitches removed. It hurt a little bit, but she was brave once again, and everything looks great. Her hair is already starting to grow back, and in no time everything will be back to normal. We praise the Lord for our great blessings, and we thank you all for your prayers. We believe it truly has made a huge difference, and it has strengthened us on this journey. We are returning to Dallas today, and are looking foward to being surrounded by family and friends once again. God Bless!!
Thursday April 14, 2005 10:30 AM CST
Wednesday was a great day for Kylie...this was her first day with NO headache all day! She still gets tired easily but she is getting better everyday. We feel so blessed as we watch how quickly she is progressing.
Yesterday the kids at the Ronald McDonald House (RMH) were given free tickets to go see Disney on Ice Finding Nemo. Alot of the kids were able to go, including Kylie, and they all had fun! The RMH is a wonderful place for these kids because all the kids here are undergoing some kind of treatment and everyone is special in some way. We are grateful for the opportunity to stay here and meet some of these wonderful kids.
Tomorrow Kylie gets her stitches out and we get the pathology report. We are praying for and anticipating a great report. The best news will be that it was benign.
Once again, thank you for every note in the guestbook, every thought and prayer for Kylie, every prayer page, and the many other ways people have shown us so much kindness and concern. We have been touched and blessed by you all.
Tuesday April 12, 2005 08:25 PM CST
Hello everyone. Kylie's recovery continues to amaze us, and for that we truly feel blessed and give thanks. Today was definitely her best day. Her days kind of run in cycles. Up for 4 hours, down for 2-3, then repeat the cycle. Her strength and stamina continue to improve daily.
Today was a big day, as we went back to the beauty salon at M.D. Anderson to get her hair washed and trimmed. They were so wonderful there, and they knew exactly what to do as they deal with cancer patients every day. They suggested we leave most of Kylie's hair as is, and to let the shaved area grow back out. After just a little trim, and some really colorful scarfs, you can hardly see her scar area, and she looks great (see her updated photo album)!! We can't say enough good things about the people at M.D. Anderson. They have all been wonderful.
And last for today, we can't say enough about the Ronald McDonald House and what it means to families in need. They really provide a wonderful service, and make a huge difference for the kids here. The kid's stories are truly amazing, and really touch the heart. If you give donations to charity, or volunteer your time for a worthwhile cause, I'd ask you to please consider one of the following as they have made a profound difference in our situation:
-The Ronald McDonald House : www.rmhc.com
-M.D. Anderson Cancer Center : www.mdanderson.org
-CaringBridge : host of this website, visit www.caringbridge.com
-Coach Charlie Stalcup Foundation : Prayer pager ministry, phone 214-219-1000
Monday April 11, 2005 08:20 AM CST
Yayyyyyy!!!! We got discharged from the hospital yesterday. It is amazing to us that less than 72 hours after Kylie's surgery was completed they were discharging us. Not sure if mom and dad are ready for that, but we'll figure it out. We were discharged yesterday around noon, and have since moved back to the Ronald McDonald house for her continued recovery. Recovery is going slow, but that is to be expected. Kylie can go full steam for an hour or two, and then she really gets tired out and has to rest. But we are definitely seeing periods of the "old" Kylie, and that is really great!
We will be sticking around Houston for the next week as Kylie has follow up visits, and our hope is to return home next weekend.
Saturday April 9, 2005 11:20 PM CST
Today was a good day. It started out a little slow, but the day progressed very nicely for Kylie. We didn't get released, but that was OK by us. We'll feel much better if it is still another day or two before that happens. But as mentioned, today was a day of progress.
The first big event was Kylie had her head wrap removed. We saw the result of the surgery for the first time, and the emotions kind of get to you when you realize what your baby has gone through. But all things considered, Dr. Lang did a great job, and the incision already looks to be healing very nicely. When her hair grows back, you will never be able to see her scar.
The second big event of the day was that Kylie was able to sit up, and by the latter part of the day was up and walking around. This is a necessity before even considering discharging her, so even though her steps were small, they were huge in the eyes of her continued recovery.
And the last big event of the day was getting off of her I.V.'s. This sure makes it a lot easier to be mobile.
We will re-evaluate with the doctors in the morning to consider whether or not to stay another day. Either way, we are in no rush, and are just thankful that everything has gone so wonderfully.
Thanks to all who continued to pray for us, who called to check up on Kylie, who sent cards and balloons, and to her classmates and teachers at LCS... well, we love you. You had a huge part in lighting up her day. A special thanks to her good friend Elizabeth (and dad Peter) for driving down to pay a special visit, and to deliver all the heartwarming cards from the kids. It certainly meant a lot to Kylie, and to us as well.
Friday April 8, 2005 10:15 PM CST
Just a quick update as we are all wore out. Kylie had a really great day. With just a couple of exceptions, she was in great spirits considering the events of the last couple of days. The best part was that sisters, Grandmas, and our close friends the Ruehle's came to visit. That really brightened up her day just having familiar faces around. She probably overdid it as she was both tired and hurting by the end of the day. Earlier in the day she had a post-op MRI. Dr. Lang paid us a couple of visits during the day, and said Kylie was doing great. After viewing the MRI, he said again that he felt they were successful in resecting the tumor. That is great news!!
Following her MRI, after 24 hours in ICU, she was moved out of ICU and up to the pediatric floor, and a regular room. Yeah!!!! Her room number is G948 (full address is listed below under Hospital Info).
She hasn't stood up yet, but that is on our agenda for first thing tomorrow morning. The headwrap also comes off tomorrow, so we will see the incision for the first time. Dr. Lang hinted that there is even a possibility, if she keeps progressing as good as she has so far, that she may be released in the next day or so. Talk about God's amazing hands at work.
Thank you so much for your thoughts and prayers for Kylie and for every prayer page that has been sent. The pager reminds us how many people are praying for Kylie - it is awesome!
Thank you and God Bless.
Thursday April 7, 2005 11:00 PM CST
Wow! What a day filled with emotions. In the end, it turned out to be a day of rejoicing! We rejoice in the fact that:
-Kylie is doing awesome! (check out the new photos)
-Dr. Lang did a great job!
-Over 200 prayer pages came in today alone, letting us know there were a lot of people helping Kylie and us through the day. We can’t thank you enough!
-God is gracious!
Just to recap our day:
5:45 AM - We started out the day early as we had to be over at the hospital for check-in. We were the first on the slate this morning, so we were in the pre-op room within minutes. Over the next hour a number of doctors and nurses visited with Kylie and us. Kylie was smiling, singing songs, and reading bible verses. Not once did she show any signs of being scared today. We’re not sure how she stays so brave, and we can’t even begin to tell you how remarkable she is. In many ways, she has been our source of strength.
6:45 AM – They gave Kylie a ‘relaxant’, which was more like a “knockout-ant”. She was soon in lala land, but was trying really hard to communicate with us.
7:00 AM – They came to take Kylie from the pre-op room up to the operating room. She sat up and tried to say something, but just couldn’t get the words out. We know she was saying “please come with me!”. Watching them wheel her away was the hardest thing we’ve ever had to do in our lives.
8:00 AM – We saw Kylie’s Child Life support nurse who had accompanied her up to the operating room. She told us everything was going great and that they had just finished all of the prep work (mainly calibrating the equipment to the MRI images, so they could exactly pinpoint the section of the brain where the lesion was).
10:00 AM – We received our first of three reports from an operating room nurse. She told us everything was going fine.
12:00 PM – Our second status update was much the same. Kylie was doing great, and everything was going well. She said she would be back to give us another update at 1:30 PM. What we originally thought was going to be a 4-5 hour surgery that would be over by noon was now looking to be a 6-7 hour surgery. Obviously we were starting to worry at this point.
2:00 PM – The nurse told us they were closing and to expect Dr. Lang to speak to us briefly.
2:15 PM – Dr. Lang came to talk to us, and reported that Kylie was doing great. He felt he was able to completely resect the lesion, with even a little added margin. Due to the location and small size, he went very slow during surgery and was meticulous in resecting the lesion. The preliminary pathology report showed some abnormal cells, but we really need to wait about 5 days for the full pathology report to come back before we know exactly what we are dealing with.
2:30 PM – We FINALLY got to see Kylie again up in her room in ICU. You can’t imagine the emotions which are running through you at that moment. She was still a little groggy, but she was awake, and everything from her motor skills and sensory functions (the areas at risk) seemed to be working just fine. What a relief that moment held for us.
The rest of the day was pretty uneventful, which is just how we wanted it. Kylie continues to recover remarkably well, and is ready to be released from ICU to just a normal room. We are praying that this happens tomorrow.
Well tomorrow holds another full day for Kylie. She has her post-op MRI in the afternoon, and most importantly, she has a number of family and friends coming to Houston to see her. We are all looking forward to that. God Bless.
Wednesday April 6, 2005 10:45 PM CST
Just a quick note on today's activities. We had a full day at the hospital. 8 hours of tests and consultations. Then we had some fun. We went to the Children's Museum of Houston, then out to eat at Chili's, and finished the evening with a trip to the movie theatre. We love the "private" time with Kylie, but we want our other girls to know that we love them, and thank them for being such great kids and understanding why we haven't been around much for them over the last few months. We love you guys!!
We are scheduled for surgery first thing tomorrow morning. We have to be at the hospital at 5:45 AM for pre-op checkin, and surgery will start around 7:00 AM, with an expected length of about 5 hours. Once again, we just want to reiterate our heartfelt thanks to all of you. You have made this journey so much easier, knowing that you are all praying for us and keeping us in your thoughts.
One last special note before signing off. We want to extend a huge THANK YOU to two very special people -- Ashleigh Stateson and Jerry Kline. You have been down this path, and we can't tell you what your visits and encouragement have meant to both Kylie and to us. You have certainly touched our lives in a way we can't repay, and we can't begin to tell you how much you have helped Kylie leading up to tomorrow. Thank you.
We'll try to post a quick update tomorrow following surgery.
Tuesday April 5, 2005 11:00 PM CST
Well, this week has finally arrived, and we just wanted to leave a short update for everyone. We arrived in Houston today, and have very mixed feelings about the days to come. We're glad this week is finally here (the waiting and anticipation has been tough), but along with it comes apprehension, and reflection on all of the doctor's visits, consultations, and decisions which have led to this point. We are comfortable in knowing the right decision has been made and trust in the Lord as it has been his decision all along.
As for Kylie, well, lets just say we continue to be amazed at her strength and bravery. We love her so much, and through this all she has continued to be "Kylie". It pains us to know she is going through this trial, but we know that healing hands are already being laid upon her, and that she is receiving the best care in the world.
Tomorrow (Wednesday, April 6th) is a full day for Kylie. We start at 7:00 AM in the morning and have a full slate of pre-op activities, including blood work, her final MRI where they will actually mark her for the surgery, and consultations with Dr. Lang and the anesthesiologist. We should finish up about noon, and then will have the rest of the day to ourselves to relax and have a good time.
To our families, friends, church families, neighbors, co-workers, acquaintances, and to those we don't know personally but have had the honor of you signing Kylie's guestbook --- We can not begin to express in words or actions the overwhelming gratitude we feel, and how much your thoughts and prayers, tremendous support, words of strength and encouragement, and just plain being there for us over the last few months has touched our hearts. We are truly blessed to have so many people keeping Kylie and us in their thoughts and prayers.
To those who have signed the guestbook or sent email -- Kylie has really enjoyed reading everyone's messages. She logs on to her website first thing every morning to check for new entries, and she reads them all. You should know that your caring has been a source of strength and enjoyment for Kylie. We can't express enough how much your simple act of letting Kylie know you are thinking of her has lifted her spirits, and for this we truly say "thank you".
Lastly, our good friend Debi went out of her way to get a "Prayer Pager" for Kylie. Debi, we want you to know that meant a lot to us. Instructions for leaving a page are listed towards the top of this web page. We're not sure if we have coverage down here in Houston, but if not, hopefully they will all queue up for our return to the DFW area. For the first hour of having the pager in our possession (while we were still in the coverage area), Kylie was really excited every time it would go off.
That's all for now. We'll try to post updates when possible.
Thursday, March 10, 2005 9:39 PM CST
Kylie has a tumor resection scheduled for April 7, 2005 at MD Anderson. She has a full day of pre-op activities on the 6th but we plan to spend the evening of the 5th at the Houston Aquarium or some other fun activity.
March 9, 2005
Dr. Clarke and Dr. Lang discussed Kylie's case and agreed that surgery is the appropriate option. We discussed the pros and cons. Dr. Clarke really would prefer to do additional mapping tests to try to isolate the motor functionality even more prior to surgery. Dr. Lang can do almost the equivalent tests during surgery but the anesthesia may dampen the brain activity during surgery so there is slightly more risk by not performing the mapping tests. On the flip side, the mapping test requires an additional craniotomy and 3 extra days in the hospital that increases the risk of infection.
Dr. Clarke can’t do the surgery until July but Dr. Lang can perform the surgery in April. Dr. Clarke said if it was his daughter he would have the surgery done in April with Dr. Lang rather than wait until July.
We decided to schedule the surgery with Dr. Lang. Dr. Clarke said he would like to take part in the surgery to perform an E-COG test during the surgery (another way to perform the mapping). We aren't sure if he will actually get to do this or not.
Kylie went to the Child & Adolescent Center at MD Anderson and they showed her pictures of what to expect while she was in the hospital. She also got to visit the Pedi Dome for a party where she got to meet a few of the cowboys in town for the Houston Rodeo and got a stuffed horse!
She does not really understand it all and she is afraid but she said she is glad she is having surgery soon instead of when she is older because then she won't have to be scared so long. We are going to try to keep her busy the next few weeks and not discuss it too much but she has to be prepared sometime before we go.
February 25, 2005
Kylie had another MRI (with contrast which meant an IV…which she hates) and then we meant with Dr. Lang for a follow up appointment. He was very glad to hear what we had learned from our tests with Dr. Clarke. He recommended surgery be scheduled right away. He said he had discussed Kylie's case with other doctor's at MD and they agreed that this tumor (be it a hamartoma or low-grade tumor) should be removed. He told us he believes this is her best chance for a cure. There is still concern over potential damage to Kylie's motor area so he scheduled a functional MRI. Also, Dr. Lang plans to do some type of functional tests real-time during the surgery to try to “map” Kylie's brain function to try to minimize any potential damage but at the same time try to get all the “bad” cells.
The functional MRI seems to indicate that Kylie's left arm and leg should be o.k. Dr. Lang thinks there is some risk that the left side of her face could have some “numbness”. We aren’t sure how much but kids are so resilient. We are praying there is no damage to any of her motor skills but if so the doctor's have told us that a child's brain can “re-learn” these skills in a different part of the brain.
Given Dr. Lang's recommendation we are leaning heavily towards surgery. However, we really want Dr. Lang and Dr. Clarke to talk.
February 6-9, 2005
The stay at Hermann proved to be very helpful in diagnosing Kylie’s “eye thing”. The MRI showed “very little” change in the lesion/tumor which was the best news! The first 2 days no seizures showed up. However, that night they had us "sleep deprive" her. She got to go to bed about 1:30 a.m. and was back up around 5:30 a.m. but it worked. They captured a seizure on video and on EEG. Kylie was officially diagnosed with epilepsy.
The MEG test (magnetoencephalogram) showed frequent epileptic activity was generated from the right parietal lobe of her brain. This seems to confirm that the epileptic activity is coming from this area and there are not other areas of the brain involved. This is also very good news.
Dr. Clarke prescribed a new medication to control the seizures, Keppra. He is still considering an option of “following” the changes in the lesion/tumor with periodic MRIs and trying to control the seizures with medications. He is worried if this lesion/tumor is removed, Kylie could lose motor functionality on the left side of her body. If surgery is determined to be the best option, he recommended further testing to try to determine the extent of motor area involvement. We have a follow up visit scheduled with him in one month.
January 10, 2005
Kylie had her first appointment with Dr. Dave Clarke, an epilepsy neurologist at Memorial Hermann in Houston. He recommended additional testing including another MRI, a MEG test, and a longer visual EEG aided by sleep deprivation to try to capture the seizures.
December 27, 2004
We kept our appointment with the neurosurgeon from Cook Children's in Ft. Worth. However, although he is probably a very good doctor, our meeting with him didn't give us confidence in his approach. He was very interested in Kylie as a case study. We decided to go back to MD Anderson.
December 6-15, 2004
Because of the 6 weeks delay in seeing the neurosurgeon in Ft. Worth, on December 6 we submitted Kylie's case to MD Anderson in Houston to ask if they would see her. They got us in to see the pediatric neuro-oncologist, Dr. Khan, on the 8th. They also performed another MRI on the 8th -- her 1st MRI with contrast (which meant an IV) but she did o.k. this time. Dr. Khan said it was possible this is a hamartoma (which is benign) or some type of low-grade tumor. Without tissue samples, he told us there was no way to know what type of cells were involved. He recommended that we have it removed and referred us to a neurosurgeon who specializes in brain tumors at MD Anderson.
We saw Dr. Frederick Lang a week later. Dr. Lang agreed with Dr. Khan's assessment. He told us that all tumors eventually progress from a low-grade to a mid-grade and then a high-grade. But because of the seizure type activity that was still undiagnosed he recommended that we see a neurologist specializing in seizures and epilepsy. Without knowing more about the potential seizures, he was afraid there may be multiple areas of the brain involved. He wanted to make sure this was the only area of the brain involved. If there were multiple areas of the brain causing seizures he wanted to know that so we could schedule one surgery instead of two.
Around this time, Dr. Aceves prescribed Trileptal to try to control the “eye things” because they were happening so frequently. We saw no improvement after one month and stopped the medications.
November 17, 2004
We had a follow up visit with Dr. Aceves and he told us that the radiologist in the hospital had “misread” the MRI. MS was highly unlikely but Kylie has a tumor or some sort of type of structural abnormality. He referred us to a neurosurgeon in Ft. Worth for a consultation. The neurosurgeon's schedule was so packed that we had to make an appointment 6 weeks out.
November 12-14, 2004
Kylie had an MRI on the morning of the 12th (and happily she slept through the whole thing) and that afternoon they hooked her up to the EEG. Hooking the 20 EEG probes to her head wasn't too bad – except for the smell. :) Because they video taped her the whole time to try to catch any potential seizures, she couldn't get out of bed except to go to the restroom. By the end of the first day, she was getting tired of the bed but she didn't complain too much.
The doctor came by on the 13th and said the MRI showed some type of spot. The radiologist didn't think it was a tumor or structural abnormality but said MS was a possibility.
Other than this, the rest of the testing was uneventful because they weren't able to capture any seizure activity.
October, 2004
Kylie finally got in to see a neurologist, Dr. Jose Aceves, from Cook Children's in Fort Worth. He said it was possible that her symptoms were some type of seizure. He recommended an MRI and a 48-hour visual EEG.
September, 2004
We saw an Ophthalmologist in Arlington and he found nothing wrong with Kylie's eyes. Her vision was great!
August, 2004
We visited the pediatrician and he said Kylie's symptoms were very peculiar or something like that. He referred us to an Ophthalmologist but said to see a neurologist if the eye doctor didn't find anything.
Early Summer, 2004
Kylie first mentioned her "eye thing" in early summer. We thought she probably just had “floaters” in her eye or something like that. But some time in August, when we asked her to tell us when her “eye thing” happened, she finally pointed out that she couldn't see, couldn't hear, and couldn't speak whenever this happened. What had originally started out as something she mentioned a couple of times a week, was now occurring several times a day.
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Links: http://www.mdanderson.org MD Anderson Internet Address
http://www.heroesforchildren.org Heroes For Children
http://www.leukemia-lymphoma.org Leukemia and Lymphoma Society
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