created 10/07/00 Taylor Brooke Hodge Born September 27, 1998 Diagnosed June 2000 Updates March 18, 2005 I am so sorry that it has been such a long time since we have last updated Taylor's webpage. We have had a very busy year or so. We have since moved from Louisiana to Texas. So, it has been a challenge to transfer not only us, but everything pertaining to Taylor's medical needs as well. I finally feel that we are settling in. We have started seeing all new doctors in Houston. And, we have been very pleased. In fact, Taylor had her most recent MRI last week. It was all clear. We feel so lucky that she is one of God's miracles. Healthwise, Taylor is doing quite well. She has been on IVIG, a form of immune globulin, to boost her immune system. She has been on this several years. She is doing better at fighting off infections now. In fact, the doctor's are now trying to see if we can eventually wean her off of the IVIG at this point. Other than that, she is getting ready to start Growth Hormone Therapy. The chemo, combined with the radiation, has affected her ability to grow at a normal rate. So, we are starting her on the therapy within the next few weeks. Hopefully, she can catch up with the other children her age. Taylor has started Kindergarten and is doing quite well. She spends most of the day with her Kindergarten class, and then the other part in a class that addresses her "special needs". She is still behind other kids her age, but continues to make progress. We hope and pray that the progress continues. Only God knows her full potential. She loves going to school and says that P.E. is her favorite subject. Ashley is doing great. She is now in 3rd grade. She has adjusted very well to the move. She is now playing softball and soccer. She is a huge help to me since we have had another addition to family -- Shelby Elise (yes, that is 3 girls) is now 17 months old. She is something else. She keeps me very, very busy. As she has been walking since she was 8 months old. Sometimes I wonder if she is not older than 17 months. She is already talking in sentences. I guess that she is preparing for --- Baby #4 is due in June. See, I told you we have been busy!!!!!! What a surprise, right after the move. We are still unsure how we will handle 4. But, we have just decided that God knows what He is doing. Thanks to all of you who still think about us and pray for Taylor. We really appreciate all of your support over the years. The Hodge Family Steven and Cathy Ashley, Taylor and Shelby March 17, 2005 This is Taylor's Mom. She is doing quite well. We have just had a very busy year. We have moved to Texas from Louisiana. So, it has been a challenge to transfer Taylor's medical needs. We have started seeing all new doctors in Houston, Texas. And we have been very pleased. In fact, Taylor just had her most recent MRI last week. It was all clear. We feel so lucky that she is one of God's miracles. The only other problems we have encountered thus far is that Taylor will be starting Growth Hormone Therapy within the next few weeks. Because of the radiation and chemo, she is just not growing like she should be. So hopefully this will catch her up. She has started Kindergarten. She spends most of the day with her kindergarten class, and then the other in a class that addresses her special needs. She is still behind in her learning, but continues to make progress. I just keep praying that this continues. Only God knows her full potential. Other news, since we have moved -- we have had an addition to the family. Shelby Elise is now 17 months old. We will be welcoming #4 to the family in June as well. Taylor has adjusted to the all of the changes very well. Thank you so much for inquiring about her. It is unbelievable that this the first thing that I saw during my first visit back to the website. July 28, 2003 Great news!!!! Taylor had her routine MRI on July 15th. It was clear once again!!! This makes 3 years now since she was diagnosed with the tumor. It is so hard to believe that we have come so far. God has been so good to us and has answered many prayers. It has been a long and difficult journey. One that will never be complete. It is so difficult every time we have another MRI and have to wait for the results. The fear of the cancer returning will always be there, but we know that we cannot live our lives like that. So, we live each day to the fullest and are so thankful for all that we have and all that we have been given. Thanks for all of your prayers and support! We love you all! The Hodges JUNE 15, 2003 Hello to everyone! It has been such a long time. Our computer is up and running at full speed at this time. I threatened Steve that if it goes down again, I will throw it out the window, and we will start with a brand new one next time! (Ha Ha) I am just glad that I am able to start putting in updates once again and keep up with all of the other children who are dealing with this MONSTER. I will start off by letting you know that we last had an MRI about 3 months ago. It was all clear!!! God continues to watch over us. Our next one is coming up in July. It has not been scheduled at this point. We have still had our share of doctor's visits and hospital stays this past year. Taylor has dealt with chronic sinus problems since last year. We were hospitalized several times with high fever due to an infection (usually something that had to be treated with IV antibiotics). We were on IV antibiotics a total of 6 months (in and out of the hospital). Each time we did a CT scan of her sinuses, it showed that they were full of fluid. The ENT, wanted to continue IV therapy. He was very hesitant to do surgery to try to alleviate the problem. We had our fill of IV antibiotics. And so, our HEM/ONC doctors pushed and pushed to have the sinus surgery done. Finally, the ENT agreed to it. He agreed, but told us that it was not a complete cure. He feels that the "sinus windows" will just grow back and we will be right back where we started. However, he failed to realize and see that during all of this Taylor had many tests done on her immune system. Which of course showed that she had a decrease in her ability to fight off certain infections. So, Taylor has been undergoing monthly injections of IVIG (immune globulin) to "boost" her immune system. This combined with the sinus surgery has done wonders for her!!!!! It has been about 2 months and so far, so good. She continues to see all of her other specialists as well. And is doing great in all areas. She is still wearing glasses, but they just recently decreased her prescription, and she seems to be able to see much better. However, we have to watch and make sure that we do not decrease it too much, or her eyes could start crossing again. Her last hearing test was about the same. Still showing just high frequency hearing loss. However, until she cooperates and takes the test in the booth, the test is not 100% accurate. She is scheduled to go back to see the orthopedist this month. She is still wearing the brace (DAFO) on her left ankle/foot. She is walking very well now. But, still has a problem with uneven surfaces. Lastly, she continues to see her Neurosurgeon twice a year. Dr. Nadell is also her rehab doctor that took care of her when she had the stroke last year. He is was totally amazed at the progress she had made when he saw her at the first of the year. However, he really wanted to see more expressive language coming form her. Well, will she have something to show him when she goes to see him next month. She is now talking constantly and making full sentences to where most people can understand her (not just Mommy)!!!! Taylor did very well in school this year. She still attended the Early Intervention Program at the elementary school across the street. I have so much admiration for her teachers and her paraprofessionals. They are wonderful with her. They love her, but they also push her to reach her maximum potential. She really came a long way this year and I am forever thankful to Ms. Lita, Ms. Rebecca, Ms. Theresa, Ms. Lois, Ms. Cyrilla, and Ms. Lisa. To me they are gifts from God. Taylor will continue in this program for 1 more year. Her birthday falls at the end of September, so she will wait another year before starting kindergarten. I believe that another year in the EIP classes will do her a world of good, and get her close to being ready for kindergarten. She can count to 20, say her ABC's, and can almost write her name. You go Taylor!!!!!!! Ashley just finished 1st grade. And is looking forward to being a 2nd grader next year. She is reading so well now. She has even gotten to where she reads to Taylor at bedtime. Ashley has a very busy summer ahead of her. She is doing swim team again this year and loving every minute of it. Our little fish!!!! She is also going to Girl Scout Camp, soccer camp, and horse camp this summer. And to start the summer off this year, Steve and I took the girls to Disney World the first week in June. We all had a blast and it was a wonderful trip for all of us. Special news from the Hodge Family - Ashley and Taylor are going to be big sisters in October!!!!!!!! Steve and I expecting on October 12. The girls are very excited and can't wait to welcome the new baby home. Thanks again to all of you who still keep up with our family and keep us in your prayers. Our family is so thankful for all that we have, including loving friends and family like all of you. God Bless You All -- The Hodge Family 12/01/02 Taylor is doing well at this point. However, we had some difficult times over the summer. Taylor had a stroke on July 5. It affected her left side. An MRI confirmed that it was a stroke. The question was why!?!?!?!? After many blood tests and months of rehab, we found out that she has a genetic defect called a Factor V deficiency. This means that she has a genetic predisposition to form clots. And, it has nothing to do with the tumor or any of the treatments she received. She has fully recovered from the stroke, and is caught back up on all of her motor skills. After this occurred, Taylor was hospitalized for excessive bruising. When she was admitted, her platelet count was 2 (or 2,000). She received immunoglobulin to be treated for ITP (immune thrombocytopenia …). After, a few days, she was released from the hospital. However, a few days later, we were back at the hospital because the platelets were not continuing to rise. She was then started on steroid therapy. I mean massive steroid therapy. She was started on 54 mg twice a day every day. We have just finished up the therapy. And that has been 3 months of steroids. So far, so good!!!!! We are sending our love to all of you. Sorry that it has been such a long time. Hopefully, sometime soon we will have our computer up and running again. God Bless, The Hodge Family July 1, 2002 Hello everyone! Once again, it has been a while since I last updated. And again, I have to blame it on computer problems. Everything is going great here. We did have a few problems in May. Taylor had her tonsils removed and did very well until about a week later. She was put in the hospital with pneumonia and dehydration. It was the same weekend as Ashley's first ballet recital. So, to make things easier, we opted to have Taylor put in the hospital here in Mandeville. She was in for four days and did not improve at all. She was lethargic, not eating or drinking, and sleeping up to 20 hours a day. At that point everyone concerned began to get scared that the MONSTER had returned. So, we transferred her to New Orleans to Ochsner Hospital for an immediate MRI. Things were seeming too much like they had been the first time she was diagnosed. And, once again, our prayers were answered. The MRI was normal. It did show that all of her sinus cavities were packed and full. Probably from the fact that the tonsils were not letting anything drain. However, we were not at Ochsner for more than a few hours and Taylor began to perk up!!!!! Everyone joked that she just needed to be in "her" hospital!!! She was treated for another couple of days in the hospital and then sent home on I.V. antibiotics for another 2 weeks. She is doing absolutely wonderful. She is really beginning to talk now. She is constantly jabbering now. We are spending a lot of time at the pool this summer. And she loves to be in the water and "fwim". Ashley is also doing very well. Her recital was wonderful and she looked like a little princess in her costume. This summer she is doing what she does best--SWIM. She is on the swim team here in the subdivision. She has practice every morning and swim meets every other Friday. We have always called her our little fish. Steve and I are doing great. It seems as if I am busier this summer than I am during the school year. Speaking of school, this summer is going by too fast. The girls only have about 6 weeks left before school starts again. Once again, thank you for all of your prayers. They are working and we would not be where we are without friends and family like all of you. You all mean so much to us. We are so honored that you all have been with us these past two years of our lives. Yes, we have made it one year off of treatment!!!!!!!!!!!!!! Taylor's next MRI will be around the end of August. And barring any computer difficulties I will update sooner. Thanks again and we love you all!! MARCH 26, 2002 I am writing with wonderful news! Taylor's last MRI (on March 19) was GREAT!!!!! The scan came back normal. Thank you God! We have now made it 9 months off of chemo. We are pushing for the 1 year mark. But, of course each day is truly a blessing. Taylor is doing absolutely wonderful. She is now trying her best to run everywhere. Her speech is getting better, she knows the letters of her name, and she can identify colors. She has come such a long way in the past few months. Each and every day she continues to amaze us with something new. She is thoroughly enjoying school. She is going 5 days a week, from 9 to 3. And, she is still not ready to go home when I go to pick her up. Ashley continues to grow in front of my eyes each day. It is so hard to believe that she will soon be finished with kindergarten, and moving on to 1st grade. She is doing so well in school. She is now reading, and is soooo proud of it. In addition, she has 2 loose teeth. She cannot wait for the tooth fairy to come visit her. Steve is doing well. He is staying busy with work. He has also been having a lot of back problems lately. It had him laid up in bed for about a week, but now he seems to be doing better. Another note of wonderful news: Taylor has been selected to lead of the Relay for Life race. This is a fundraising race for the American Cancer Society. She was chosen, as a cancer survivor, to be an Honorary Chairperson. She will have her very own pink shirt, will stand up on the stage with the mayor, and then SHE will begin the race. It is such an honor to have her selected for this. Again, thanks to everyone for their continued prayers. And thanks to the God for the many wonderful blessings He has given us. God Bless You! The Hodges January 10, 2002 Hello to all! I am sorry that it has been a while since I updated you on Taylor. We had some major computer problems that are finally fixed. First, and foremost, we hope that all of you had a very happy holiday season. Ours was wonderful. It started off with Taylor's last MRI (end of November). Everything looked great. There is no sign of tumor!!! Once again, our prayers are answered. The results of the MRI were a wonderful beginning to the holidays. As for Taylor, she is doing exceptionally well. She is loving school and it is wonderful to see the way that she is transforming from a baby to a toddler. And she is now a toddler in all respects. She is WALKING now!!!!!!!! It was the one thing that I wanted to see more than anything else Another prayer answered and another wish come true. She is also opening doors and talking more and more. Life in our household has changed tremendously in the past month. It is a change that I thank God for each and every day. We spent the holidays in South Texas with our parents. It was wonderful to be able to travel and not have to worry about counts, Dr. appointments, etc. The girls had a wonderful time. And Santa was wonderful to them. Taylor's excitement was unbelievable. Ashley is doing great. It has been a change for her as well. She is now having to deal with "little sister" into everything, including her stuff. The sibling rivalry and wars are underway in the Hodge household. Ashley is still loving ballet and is looking forward to her recital in May. Steve and I are so grateful for this wonderful Christmas we had. Health and happiness were all we wanted, and we received them two-fold. We are so thankful to our family and our friends for supporting us through the rough times and even more thankful for the wonderful times that we are able to share with them. God Bless all of you! (P.S. The next MRI is scheduled for the end of February) October 2, 2001 Hello to all and thanks for all of the wonderful cards, e-mails, and gifts for Taylor's birthday. It was a very, very special day to our family. Our little angel is doing so well and growing in so many ways right now. We have so much to be thankful for. I wanted to write and let all of you know that Taylor had another MRI on October 1. We had this one done at Ochsner Hospital. We will now do them back over here, unless there is a change in the scans. And then, we will do one of the more sensitive ones. We also found out the Ochsner is getting a machine to do PET scans very soon. Dr. Ducos feels that this will be even better way to do Taylor's scans. So, maybe now we won't have to be jumping from hospital to hospital. It makes it easier on Taylor for things to be routine. As for the results of the MRI: there is NO SIGN of tumor. The scan is normal! Thank you God for being with us and answering more prayers. You are an awesome GOD. And thank you to all who have continued to pray with us each and every day for Taylor's continued progress. Speaking of progress: Taylor has started school! She is now attending the same school as Ashley. She is in a special program for early intervention. She is in a normal classroom environment and receives her occupational, physical, and speech therapy as well. She is attending 5 days a week from 9 to 12. I have to say she looks absolutely adorable in her little uniform. She has been 2 days now. The first day was fine. She cried very little. Today, was a little worse. She has figured out that I am taking her there and leaving! Today, the teacher took her and she started SCREAMING. It absolutely broke my heart. But, the good thing is Ashley's teacher saw what was happening and took Ashley to help calm Taylor down. Everyone is working so well at the school to get Taylor acclimated. They are absolute angels! Taylor is walking better and better each day. She is getting brave and starting to let go more and more. She is also starting to talk. She is constantly babbling. She tries to tell me something, and most of the time I understand, but, if I don't, she will not give up until I know what she is saying. Ashley is doing very well. She loves school and loves taking ballet. The past few days, while Taylor has been in school, I have been volunteering in Ashley's classroom as a teacher's helper. Ashley thinks that this is wonderful. I will now start helping in her classroom 1 day a week. I am also doing a lot of PTA volunteering as well. Life is so wonderful right now. We are enjoying each and every day and not taking anything for granted. Thanks again for all of your thoughts and prayers. They mean the world to us. All of our love, Steven, Cathy, Ashley, and Taylor Happy Birthday Taylor!! September 27, 2001 Happy Birthday Taylor! Today is your 3rd birthday. Happy Birthday sweetheart. I hate to admit this, but 15 months ago I was not sure if I would get so see this day. But, God has been good, and has answered many prayers. You will never know how much your Daddy and I admire you, even though you are only 3. You have been a "little trooper" and refused to let anything get you down. You have endured more in the first 3 years of your life. More that most adults endure in a lifetime. Yet, you have always been happy and fought each and every day. I know that you will not remember most of what you have been through fighting this cancer. But, one day I know that you will read these updates and realize just how special you are. You are truly a blessing from God to me and your Daddy. You and your sister are what your Daddy and I live for. On this day, your 3rd birthday, I wish a happy lifetime for you. I hope that you will continue to always be happy and continue to fight as you have done in the past year. Your Daddy and I want the best for you and your sister. And, we will do anything and everything to make sure that you both get it. We will be here for you both no matter if the times are good or bad. Just remember, what your daddy and I say. Our love is: "Always and Forever". Now that you are 3, you are entering another phase in you life. You are beginning to walk, beginning to talk, and will start your early intervention classes at "sissy's" school next week in hopes that when you reach 5 you will be ready for kindergarten. It amazes us all at what you have accomplished in the past year. You are growing up very fast right now, but remember you will always be my BABY. Always remember that God has blessed you in a very special way. He has blessed our family equally, by giving us a little angel named Taylor. Happy Birthday Taylor! We love you Always and Forever! Mommy, Daddy, Sissy And all of your family and friends August 17, 2001 A very quick note to let everyone know the results of Taylor's MRI and spinal tap. God is good! He has answered more of our prayers. The MRI came back showing nothing. They can see NO growth of any kind!!!!! And, the spinal tap was normal as well! Praise the Lord. The power of prayer is so awesome. Thanks to all of our guardian angels who have seen us through another anxious time in Taylor's illness. God Bless You All! Steven, Cathy, Ashley and Taylor August 7, 2001 Hello to all! I wanted to write and update on what has been going on in the Hodge household recently. Things have been going well. We had a wonderful vacation. It was so nice to see the many friends and relatives that we haven't seen in a long time. Taylor did very well on the trip and had a wonderful time at the beach. It was nice to be able to get away for awhile and not have to worry about "low counts" or doctor's appointments. We are planning one more getaway this summer to Panama City, Florida. We will go for a long weekend the weekend after Labor Day. Taylor went to the clinic yesterday. She was scheduled to have a Baer hearing test, however, after seeing the ENT, she was unable to have it. She has double ear infections that are pretty bad. She was put on antibiotics and is now scheduled to have her third set of tubes put in her ears. The ENT feels that this is the best route at this point. He does not feel that we need to wait. He also said that because she has had chemo and radiation to her head, that her eustachian tubes are not functioning properly. In order for her to feel better and to hear better (at a time when she is really trying to talk), it is best to go ahead and put the tubes in. He does not want ear infections to cause her to be delayed any more than she already is. This will be done on Friday (Aug. 10). We did her counts as well yesterday. They were all fine. It is so great to have normal counts again and not have to worry about neutropenia or low platelets. She also saw Dr. Ducos as well. It was a great visit. He really thinks that she is doing well. He wants to do a spinal tap on Friday when she is having the tubes put in her ears. Hopefully, things will work out and they will get both done at the same time. This will save from having to sedate her twice. I will update you with the results of the spinal when we get them. I also want to add a special note to Dr. Ducos: It was great to see you yesterday. You have been such a special person in our lives for the past year. You have been like a guardian angel to us during this year. You were always there for us, ready to listen when we just needed to talk. You always listened with great patience. You will never know how much you mean to us. We feel as though you are not only Taylor's doctor, but a friend as well. Your caring ways with Taylor mean the world to us. It means so much to us that you were willing and able to take on this horrible AT/RT without us having to pack up and move to another state to be treated. You researched, and called, and researched, and called some more. You did everything you could to give us the best options for treating Taylor's cancer. Thank you so much for everything you have done for us. You mean the world to us, and may God bless you always. Well, now back to my update. Ashley had her appointment with the neurologist as well yesterday. She has been having a lot of headaches lately. So, her pediatrician wanted the neurologist to see her. It was her feeling the she is having migraines. The doctor confirmed this yesterday. He is not to concerned at this point. Tylenol seems to take care of them and she is not having nausea and vomiting with them. However, he feels that they could get worse. For a while, we were thinking that she was complaining for attention, but then she would complain about certain colors making her head hurt worse. It was at this point that I took her to the pediatrician. The neurologist is quite certain that they are in fact migraines, especially since they run in my family. She is doing fine and has not had any for a while now. She is getting ready to start kindergarten in a few weeks. I cannot believe that ! she is starting school. She is very excited and can't wait to ride the bus! Taylor is also doing very well. She has started taking steps now. She is getting more and more stable with each day. She is also starting to say a few more words and to mimic. It is amazing at how far she has come since she has been off of the chemo. She is putting on some more weight, but is still not eating very well. She continues to drink her Pediasure. She is a real handful right now. She and Ashley keep me very busy trying to settle all of their sibling fighting. Finally, I want let you know that Taylor is scheduled for another MRI on August 14. We are praying everyday that this one will be clear as well. We really feel that God is watching over us right now. I will update when I have the results of the tests. Until then, thank you again for keeping us in your thoughts and prayers. July 10, 2001 Hello to everyone! The results came back in on Taylor's MRI. The results were great!!!!! They found the tumor bed and were unable to find any traces of the tumor!!!!!! Thank you God! Another prayer has been answered. Now, we will wait 4-6 weeks and have another MRI done. Dr. Rozans wants the MRIs to be done closer together that every 3 months, so that we can stay on top of, if any, changes. Meanwhile, she is also looking into other hospitals to do the bone marrow procedure as a precautionary measure. Right now, we enjoying the free time that we have and having fun with the girls. I have to admit it is so nice to not have such a regimented schedule of doctor's visits and hospital stays. This is a time that we owe to God. Thank you Lord for giving us this precious time! I will update later when we have more about what the next few months holds in store for us. Meanwhile, we are preparing for a trip to South Texas to visit family, to see friends, and to attend Steve's 20 year class reunion. We are looking forward to the getaway. The reunion is being held at the beach, so it should be lots of fun for us all! Until later, thank you all again for all of your support, love, and prayers. You, along with the guidance from God, have really helped us in the past year. God Bless You All! The Hodges June 30, 2001 Hello to everyone! Things in the Hodge household have been going fairly well. First, Taylor made it after the last round of chemo without having to go back into the hospital with a fever. She did, however, need several transfusions. One red blood cell and several platelet transfusions. We are still not sure whether her body is making platelets on its own. We will go back in Monday for bloodwork to see. Second, we (along with Dr. Ducos) have decided that Taylor will not get the last round of chemo that she is scheduled for. So, she is officially finished with her chemo! Although it is wonderful, it is a very, very tense time. We went in to talk to Dr. Rozans at Tulane Hospital in New Orleans (she is a bone marrow transplant specialist) about Taylor's bone marrow rescue procedure. After talking with her, this is where we stand at this time: Taylor will go in for an MRI at Tulane on July 3. This MRI will be a little different. They will use a different software which will allow them to see more into the tumor bed. After this, she will likely go back in for another MRI in about 3 weeks. They will then compare these to see if they can detect any changes. Dr. Rozans said that changes have been noticed in other cases in as little as 2 weeks. This is good!! Because if there is going to be any tumor growth, we want to catch it as early as possible. We are praying faithfully that these MRI's will not reveal anything. This is one of the reasons why we decided not to do the last round of chemo. We want to see what these MRI's show with Taylor being off of chemo. If, there is sign of tumor growth, then we know that we will have to go ahead with the bone marrow procedure. Yet, another reason for not doing the last round of chemo. We want Taylor to be as well as possible before having to do this procedure. This procedure will be the best chance of killing the cancer cells. The procedure entails giving Taylor very high doses of chemo. This will, in turn, kill Taylor's own bone marrow. At that point, they will then give her the bone marrow that we previously harvested from her. At that point, her body should then be able to start producing cells on its own. This procedure will be a very difficult one. One side effect that is especially frightening, is that the chemo could be toxic to her. If there is no sign of tumor growth ( we pray that this is the case), it is still possible that we will go ahead with the procedure. The main reason being that it is the last effort that we know to make sure all of the cancer cells have been destroyed and there will be no regrowth of the tumor. And then, we do not know that it will destroy of these Rhabdoid cancer cells. If this is the case that we are dealing with, the procedure can't be done here in New Orleans. It will have to be done elsewhere because Tulane's protocol calls for there to be a relapse. So, Dr. Rozans is checking into us getting in under another hospital's protocol for doing this procedure as a prophylactic measure. I guess we are at another crossroads. We are not sure at this point what is the right thing to do. And, as many of you know, with this type of cancer there may not be a right answer. We are asking all of you to pray with us so that God will guide us, as He has this past year, in making the best decisions for Taylor. A year ago, we found out that Taylor had a tumor. That was a very hard time in our lives. But, now that Taylor is finished with chemo, the waiting to see what happens is just as difficult. They are equally anxious times in our family. We pray that God will continue to give us the strength we need for the months ahead. I will update you further after we have had the MRI, and then later when we have come to a decision as to what is next. All of our love, The Hodges June 4, 2001 Hello everyone! I am so sorry that it has taken me so long to update you. Things have been very, very hectic. Taylor had her round of chemo on May 3. Everything went well with that hospital stay. However, she was admitted to the hospital on May 11 because of a fever. It seemed to be the normal routine (blood cultures, i.v. antibiotics for a few days, etc.). But, the day we were ready to go home (5/14), Taylor had problems with her skin mottling and her blood pressure dropped to 54/34. Of course it scared me to death. The doctor was unsure what to make of it, so we watched her for a few minutes. The thing that did not make any sense was that she was acting fine. She was not lethargic, nor showed any other signs of being distressed. And within 7 minutes her BP came back up. So, the doctor, as well as Steve and I, did not feel comfortable letting her go home at this point. Dr. Ducos and Dr. Shorin decided to run some tests to see if a reason could be found that was causing her blood pressure to drop. We have been noticing that she does this during the time that her counts are down, usually when she has some sort of infection. However, at this point, no sign of infection was present. More blood tests were ordered: urine cultures, an EKG and an echocardiogram of her heart were ordered. It was thought that maybe some of the chemo had done some damage to her heart. However, all of this came back fine. Thank you God. Taylor's heart is very strong. At this point Dr. Ducos felt that another MRI of her brain needed to be done. He wanted to check and make sure that there was nothing affecting her ability to regulate her own blood pressure. And as fast as this type of tumor can grow, we felt like it was definitely something that we needed to check. It took us a few days to get the MRI done. It was done under general anesthesia on May 17. However, the results showed "something abnormal" on the lining of her brain. It was still not an answer to the BP problems, but another problem that faced us. The pediatric neurosurgeon looked at the MRI and felt that it was nothing to worry about. BUT, what was it????? We were not satisfied with this. Especially, knowing that Rhabdoid cells can multiply so fast. So another MRI was scheduled for two weeks later. We went home from the hospital on May 18 with Taylor acting as if she had never been in. Of course, our little trooper just keeps right on going. Meanwhile, Taylor also had an EEG of ther brain done to see if there was anything abnormal that could be causing her BP to be so low at times. This came back normal as well. More prayers were answered. At this point, the doctors can not find any reason for her BP to be low. They feel that it is not affecting her, and that it is not something we need to be worried about, unless she starts to show some signs of distress. A spinal tap was also done as well. More good news -- there were no cancer cells present in her spinal fluid. Taylor's second MRI was scheduled for June 1. I have to say that those two weeks were full of worry, anxiety, and a lot of prayer!!!!! The prayer worked and God gave us yet another miracle. The MRI came back normal!!!!!!!!!!!!! What was it that they saw on the first MRI?? No one is certain. It could have been fluid, blood ... We are just so thankful that the second one was clear!!!! Taylor will probably go in this Thursday for her next round of chemo. This is the second to the last one. YEA! It has been one year since Taylor started to show symptoms of this awful monster called Atypical Teratoid/Rhabdoid Tumor. Next week it will be one year since our lives completely changed. But, thanks to God, the support and prayers of our many family and friends, and the ability for Steve and I to lean on each other -- we have made it. It has been such a precious year to us. We are so thankful for the many miracles and the many prayers answered. Thanks to all of you for your love, support, thoughts, and prayers. Each and everyone of you hold a special place in our hearts. I would especially like to thank David Schutz for making Taylor's webpage possible and for giving me that opportunity to be able to keep you all updated. Mr. David, you are truly a very special man with a heart of gold! May 1, 2001 My apologies to everyone for taking so long to update on the results of Taylor's MRI. After such a stressful time, our family needed a mini-vacation. So, we went to Tennessee (more on the trip later). Taylor had her MRI on April 19th. The results were wonderful. There was no evidence of any regrowth of the tumor. Her brain and spine were clear. Thank you God!!!! But, the MRI showed something in her chest (lung area). The radiologist and Dr. Ducos deemed it necessary to do a CT scan ASAP. Therefore, we spent the night in the hospital, as Taylor needed a red blood cell and platelet transfusion. The first thing Friday morning, Taylor was sent down for the CT scan of her chest and abdomen. It was very scary, especially because this type of tumor is known to spread into the chest or abdomen. We waited until late that afternoon for the results. The results were equally as wonderful -- the CT scan was normal. Of course, we were confused!! What did they see on the MRI? The doctors seem to think that it could have been some mucous, or that it was an "artifact" on the x-ray film. Regardless,! the doctors, as well as Steve and I, are confident that Taylor has no form of cancer growth at this time!!!! As you can see, after such a gut-wrenching few days, we needed some time away! We went to Elizabethton, TN (near Johnson City) to see family. Steve's parents (Doug and Jean) went with us to visit Jean's sister(Aunt Sue) and Jean's Mom(Granny). It was a wonderful trip. We enjoyed it very much. It was so great to see Granny, as she has been having many health problems lately. It did her much good to see her great-grandchildren. The trip was so relaxing, which is what we needed. We should be in the hospital at this time doing chemo. But, Taylor's counts are not quite high enough to start the next round yet. Hopefully, by Thursday she will be ready to get one of the last three treatments out of the way. Three more to go now!!!! Thank you so much for all of your thoughts and prayers. They are truly the one thing that keeps us going. God has been so good to us. And we firmly believe that He will continue to watch over Taylor. All of you are guardian angels to us. Without your prayers, thoughts, and support things would be so much more difficult. God Bless Everyone of You! April 4, 2001 Just a quick note to let everyone know how things have been going. Everything here has been going well. No major problems to report at this time. Taylor went into the hospital on March 29 for another round of chemo. This round turned out to be a little different. The doctors took her off of the drug Cisplatin, and added a new drug called Carboplatin. She was taken off the Cisplatin because of the high frequency hearing loss that has occurred. The doctors felt that we did not need to continue because of the possibility of more prominent hearing loss. However, this still is possible because we are not sure how long the Cisplatin can have an effect on her hearing. The new drug, Carboplatin, also has a possible side effect of hearing loss. But, it is not as common. Anyway, because of the switch of chemo drugs, Taylor's stay in the hospital was only 1 night. I do believe that is the shortest amount of time we have been in the hospital in almost a year. Now, we have to wait and see what kind of effect the Carboplatin has on her counts (platelets, red blood cells, and white blood cells). The doctors feel that Taylor's counts will fall hard this time, and may take longer to recover. We will wait and see!!!! I take her in tomorrow to get her counts checked. Otherwise, Taylor is doing exceptionally well. It is amazing how far she has come lately. She is still not walking unassisted, but the physical therapist feels that it won't be long. She still needs to build up some strength in her legs. Verbalizing is where she seems to be focusing right now. She is saying more and more. Her new favorite word is "uh-oh". She is also combining some words. She says "hi momma". These new words, combined with her signing is making it easier and easier for her to communicate what she wants. And you know a 2 year old -- they always need something. Ashley is doing great. She is now registered for Kindergarten!!!! I can't believe that she will be 5 years old in a few months. She is still playing soccer and doing gymnastics. She is also awaiting the visit from the Easter Bunny! She is dealing with Taylor's cancer very well. She still has her moments that she feels left out, but Steve and I try our best to give her that extra attention that she requires during Taylor's treatment. She is very protective of Taylor -- but, don't get me wrong the two of them can fight like anything. What Ashley has, Taylor wants. And Ashley usually puts up a good fight, but when she gets tired of hearing Taylor scream and yell, she usually gives in! By the end of the day, Mom has had her fill of "sisterly love. We also wanted to let everyone know that Taylor is scheduled for her MRI on April 19. After this, she will have 4 more rounds of chemo left. Hopefully, with the help of God, we are on the downward side of this huge mountain we came up against last June God has answered so many prayers for us already, we know that He is watching over Taylor. With Him, we will face what is ahead of us, and know that when all of this over He is who has kept us strong!!! God bless all of you! And, we will update you when the results of the MRI are in. February 15, 2001 It has a while since I wrote last. But, things have pretty hectic lately. Taylor had chemo on January 25. We went home 3 days later and things went real well. The trips to the hospital for chemo have become normal and routine (if there is any such thing in dealing with this). She also had a hearing test done after this treatment. She has lost high frequency hearing in both ears and the right ear is worse that the left. But, this is a side effect of the chemo and radiation, and we knew it was a possibility. The doctor has decreased her Cisplatin dose and will continue to do so if her hearing continues to worsen. And then on February 4, Taylor woke up with 103.1 fever. We proceeded to pack and call the doctor, knowing that we were headed for the hospital. But, what would it be this time (virus, infection, or what?). Of course, it was Sunday and we had Ashley to worry about as well. We usually pack her up and take her with us. But, my gut instinct told me to have her stay with someone. I arranged for her to stay with her best friend, Madeleine (Thank you Rob and Jenna Masson for all you have done for us. You guys are truly guardian angels to our family!) Steve was unsure of my reasons for leaving Ashley this time and I told him it was "Mommy's Gut Instinct". We got to the hospital and checked in. Her fever was still up. They drew blood cultures from her port-a-cath and from her arm, did urine cultures, etc., and started her in I.V. antibiotics. Things were going like any other hospital stay for fever, until a few hours later. Taylor's blood pressure fell, she was given extra fluids (3 I.V. Boluses) and then admitted into the pediatric ICU. The doctors said that she was getting septic. Her blood pressure was stabilized and she spent 2 days in PICU. Things looked like they were getting better (no cultures had grown and her blood pressure was normal), so they moved her back onto the ped's floor. Later that evening, her blood pressure dropped again. She was given another I.V. bolus and things looked better. But, the next morning her BP had dropped again. She was readmitted to the PICU. At this point, her doctor (Dr. Ducos) ordered some tests done on her heart! . He thought that the chemo may have caused some heart damage. With the cultures still negative, we were really worried that she may have heart damage. Later that day, the tests came back. Her heart looked good. Thank you God! And, the cultures had started to grow. Now we knew that were dealing with some type of bacterial infection in her bloodstream. It turned out to be staph epi. Probably caused from her counts being low and having a port-a -cath. Anytime you have some kind of foreign material inserted under the skin, you run this risk. We were fortunate that this was the first problem. Taylor stayed in PICU for another few days to be monitored. Once they knew what they were dealing with, the doctors started her on another I.V. antibiotic. This time they added Vancymyacin to the other 3 antibiotics. Staph has to be treated with Vancymyacin. Taylor was our "little trooper" through the whole ordeal. And now I know why my gut instinct was telling me to let Ashley stay with someone. She was such a big girl about the fact that she could not come the hospital with us this time. She is getting so big, as well as learning to deal with Taylor having cancer. Taylor was finally released from the hospital on February 13. However, she is still on I.V. antibiotics at home. I have become a nurse, just with no R.N. behind my name. Not only do I have to give shots, but now I have learned to flush her port, administer I.V. antibiotics, and hep-lock her port. It is not as hard as I had thought it would be. But, she is on an every 8 hour schedule and the antibiotic has to run in over a 1 hour period. That means 8 a.m., 4 p.m., and midnight. I am somewhat sleep deprived, but it is only for a week and we are at home!!!!!!! Taylor is doing very well. She has not had much of an appetite because of the infection. But, she is still drinking her Pediasure. We are so thankful that she drinks it, and we do not have to put it in a feeding tube to give her the calories she needs. She is still not walking, but is making great strides to do so. She is beginning to say a few more words, and is using her signs as well. We are teaching her some signs so that she will have a easier time communicating and in case she does continue to lose her hearing. All of her therapists and amazed at how far she has come. A little each day means so much. We thank the Lord that she is doing as well as she is. Without our faith, nothing would be possible. All of your prayers are truly a blessing as well. Also, please remember my Grandmother (Theresa Workman) in your prayers. A few days ago, she had some lumps removed from the inside of her cheek. We are now waiting on the biopsies to come back. God Bless All of You! January 4, 2001 Hello everyone! Happy New Year! We had a great Christmas. Of course, the best present was that Taylor is doing so well. We know that we are not out of the woods at this point, but the great news about Taylor's last MRI let us really enjoy the holidays. Taylor really enjoyed Christmas. It was great to see her interact with everything that was going on. She had a blast opening presents on Christmas morning. Christmas was spent here, at home. Her Grandma and Grandpa came in from Beeville, Texas, and her great-grandmother came from Plano, Texas. Thank you God for giving us this special time together and for the enjoyment of the holidays. Taylor is developmentally and physically back to where she was before her surgery in June. She is not walking on her own yet. But, she is real close. She does not crawl anymore. She walks with the aid of anything that moves in the house ( mostly her push-walker). She is definitely 2 now. She and Ashley fight all of the time. What Ashley has, Taylor wants!!!! Santa brought both of the girls a doll.. However, Taylor was not satisfied with hers. She wanted Ashley's, which talked. It is hard to deal with the constant bickering but, I am so thankful for it at the same time! Taylor went in on December 28 for a round of chemo (5 more to go).Things went smoothly. However, it is getting harder and harder to entertain her during the hospital stay. I took her pushwalker this time and we walked up and down the hallways. There is a picture of it on her picture page. We were home by New Years,which we celebrated at home by doing some fireworks. Ashley had a very good time. Taylor was scared to death. So, Steve and Ashley did the fireworks, and Taylor and I stayed inside the house. My gut feeling is that this is going to be a very good year! Please continue to pray that things continue to go so well. The prayers are so much and appreciated, and we know that God is listening to each and every one. We have faith that God will continue to watch over Taylor! God Bless You All, All of our Love, The Hodges November 28, 2000 Hello everyone! I wanted to update you on Taylor's MRI she had on Monday (November 27). The results were WONDERFUL!!!!!!!!!! The MRI showed that there were no signs of regrowth of the tumor!!! The doctor said that the radiologist who read it said that it was "normal". Thank you Lord!!!! Prayer has so much power! We want to thank everyone who keeps Taylor in their prayers. We are so thankful to everyone, especially God! Most people ask what happens now! Well, we continue with the next 7 treatments of chemo, which should end somewhere around June. The treatments will continue to kill any cancer cells which may still be in her body. She will have another MRI in 3 months to check again for any regrowth. We pray, and ask you to also, that Taylor's future be "cancer-free". I will continue to keep you updated. Taylor is scheduled to go in for another round of chemo tomorrow. Again, we are so thankful for our early Christmas present! Our joy cannot be easily expressed in words! Thank you friends, thank you family, but most of all thank you God! November 07, 2000 Hello everyone! It has been a little while since I have had a chance to sit down and write an update. Things have been very busy once again. Since the last update Taylor has been hospitalized twice. The first time, she was in because she had a fever. She was not neutropenic, but still had an infection somewhere. Of course, they never found the source of the infection because they always put her on antibiotics immediately. And, it could have been a virus too. She went in on the 21st of October and was discharged on the 24th. She did very well during the hospital stay. She is getting more and more active, so therefore, it is getting harder and harder to entertain her in the hospital. But, she does fine as long as she can take rides in the wagon. While she was in this time she had another red blood cell transfusion. This really seemed to help boost her stamina. She also went to see the ENT (ear, nose, throat doctor) while she was in. Of course, she hated this because they had to suction out her ears again!!!! She keeps getting build up in them. Probably due to the radiation. Our second trip to the hospital was on October 30 for another round of chemo. Her platelets finally came up enough to do the treatment. She was about 2 1/2 weeks overdue for this round. This was her 6th big round of chemo. She was given Vincristine, Doxorubicin, Cytoxin, and VP-16. This round, once again, was a breeze for our "little trooper". She did so good. We continue to thank God for giving her the ability to handle all of this so well. Taylor had to spend Halloween in the hospital. But, it was good. The Child Life Department had a party and took the kids trick-or-treating. They had such a good time. And, boy did they get the loot. It was great!! Ashley came to the hospital and went with Taylor. They really enjoy being together. They dressed up like characters from Blue's Clues. Taylor was Blue and Ashley was Magenta. Later, that evening, I brought Ashley home to go trick-or-treating with her friends. However, she decided on the way home that she was not going to be Magenta!!!! That's Ashley for you!!!!!!! So, she went as a cheerleader. She looked adorable! Taylor was discharged on November 1. She did not get out until late that evening. It was a long day. When we got home, we had to unpack and then repack. We went on a trip!!!!! Steve's niece was getting married on November 4 in Nordheim, Texas. Ashley had already left with her Maw Maw and Pawpaw. We left on the 2nd and I was very apprehensive about the trip. I didn't know how Taylor was going to adjust to traveling, especially a 10 hour trip. But, of course she amazed us once again. She did wonderfully. We all had a great time. It was a getaway that was much needed by us all. Congratulations to Clint and Lynette on their marriage. We hope you have a wonderful life together!!!!!! Also, during her stay in the hospital for chemo, Taylor was scheduled to have an MRI done. However, she did not want to cooperate. The medicine they used to sedate her didn't work. It wired her. So, we are going to have to wait until November 27 and do it under general anesthesia. I took her in to the doctor yesterday (6th) and had her levels checked. She is neutropenic now. So, now we have to really watch her for infection. Please pray that she will be able to make it without having to go into the hospital for infection. I take her in Thursday (9th) to have them checked again. By then, she will probably need transfusions. The next few weeks will be very busy. She has a hearing test scheduled, and eye doctor appointment, her MRI, etc. But, I will try to keep you informed as much as I am able to. Steve and I want to thank you all again for all of your prayers and thoughts. The prayers are working because each day, like I have said before, is a miracle. Taylor continues to make great strides in her recovery. We love you all! P.S. Happy Birthday Steve (Daddy)!!! The girls and I hope that you enjoyed your big day! October 12, 2000 Hello everyone! We have had a busy week. First of all, Taylor finished her radiation treatments. Yea!!!!!!!!! She finished them on Monday. It was very exciting to be graduating. Everyone in the radiation department was wonderful. They showered her with gifts that day. Taylor really enjoyed the little party! I am so glad that we do not have to make the daily trips each day. The six weeks really did not seem to be long. I know that God was with me each and every day helping me to keep going. Next, we finished up all of the intrathecal treatments today as well. Another yea!!!! These treatments were a little tougher on Taylor that anything else has been. They have caused some nausea and vomiting. They have also caused her to be more irritable. But, all in all, she is doing very well. She continues to be as happy as she can be. We were supposed to go in for the next "big round" of chemo this week. But, her counts were too low to do it. Her platelets were 62 on Monday, and then dropped to 12 today. So, she had a transfusion to today. Hopefully, by next week her counts will all come up. We need her counts as high as possible, because this next round is going to be tough. Since the radiation is over, the doctor will be adding Doxorubicin back to her treatment. This is one of the drugs that is really tough on her and her counts. Please pray that her counts will come up and she will do well with this next big round. Steve and I are hanging in there. All I can say is that God has given us the ability to cope and keep going. Sometimes, even I wonder, how we are able to keep going. And then I think about the fact that I am not alone! Ashley is doing well. She is enjoying school, gymnastics and soccer. They keep her busy and that is what she needs. It is so amazing to see how she has adjusted to what has been going on lately. She just goes with the flow! Steve's parents are still here. They went home a couple of weeks ago to catch up on some stuff. My parents and my grandparents came to help me out. I really did enjoy seeing them. They were here during Taylor's birthday. In addition, it was my Nana's birthday as well. Thank you all for all of the prayers. We really do appreciate it. God Bless You All!!!!! Lots of Love --- Steven --- Cathy --- Ashley --- Taylor October 6, 2000 A short update on Taylor: Taylor had her first intrathecal chemo (chemo into the spine) treatment on Tuesday. The treatment went well. She had no side effects from it. She was sedated during the spinal and within an hour afterwards was back to normal. During the treatment, they extracted spinal fluid to check for any cancer cells present in the fluid. You will all be happy to know, the test came back negative!!!!!!!!!!!!!!!!!!!! There were no cancer cells present at this time. Thank you God, and thank you for all of your prayers!!!! She had another treatment today, and will have one on Monday and one on Thursday or Friday. If her blood counts are still looking good on Monday, Taylor will be admitted to the hospital for the next round of chemo. The doctors want to keep being as aggressive as she will tolerate. So, even she is supposed to be on a four week schedule, if her body is building cells (good blood counts) then they will proceed with the treatment. I am going to cut this one short. I just wanted to let everyone know the good news about the spinal tap. Until next time -- We love you all! October 3, 2000 Hello again to all of you! The last time I wrote you we had just finished the last big round of chemo. Well, we made it through this round without going back to the hospital with a fever or infection. Her blood counts (ANC) dropped to 0, but we managed to make it through this one! Amen! However, Taylor did have to have several blood transfusions and platelet transfusions this round. But, that is easy to do in the clinic without having to stay in the hospital. I have gotten to where that place feels like a jail cell. And, I am sure that Taylor feels the same! We will be finished with radiation treatments on Monday! Thank you God! It will be a major accomplishment when we are finished. We will not have another MRI done for another 4 weeks after the radiation is finished. It takes this long to get an accurate result. So we will wait and pray until then. We have added a new treatment to Taylor's regular chemo. We have decided that we will have to do something to make sure that there are no cancer cells floating around in her spine. Since we decided against radiation to the spine, we are doing chemo directly into the spine (intrathecal chemo). We started this today. We will give Taylor 4 treatments in a two week period. It involves doing a spinal tap to check the spinal fluid and to administer the chemo into the spine. We are hoping and praying the God guides us through this step in Taylor's treatment as He has done in the past. We pray that the results of this first spinal will have good results and show no cancer cells in the fluid. If there are, we will have more major decisions to make in the future. Please pray that those nasty cancer cells do not show up in anymore of Taylor's tests!!!!! She did very well with her treatment today. The doctor sedated her and then performed the procedure. The hardest part was trying to make her lie flat for thirty minutes afterwards. She may be tiny, but she is STRONG. She has been happy and playful the rest of the day! Taylor is not scheduled for another big round of chemo until October 16. And her counts are already back up. She is no longer neutropenic. So, maybe we will have a pleasant week and a half before starting the process all over again. I want to thank you all again for all of your concerns and prayers. I think about each and every one of you everyday. We love you all!!! God bless you! September 25, 2000 Hello everyone! A short note to let everyone know how things are going. Things have not too bad lately. Taylor seems to be doing better than ever at this point. She has been really happy lately. And very active. She is still not walking, but I don't know how I will ever keep up with her when she does. She has been into everything lately like a normal 2-year old. Well, almost 2. The last time I wrote we preparing to have her feeding tube put in. Well, she started eating very well all of the sudden, and has been eating well ever since. The Good Lord works in great ways. We prayed and prayed that the feeding tube was not something we would have to do, and lo and behold Taylor started eating!!!! Another small miracle that we thank God for. We have put off the feeding tube until later, if needed. She seems to have the most problems with eating when she is in the hospital, so her doctor has decided to give her TPN feedings while she is hospitalized. TPN is IV feeding through her port. So, hopefully she will continue to eat and we will be able to maintain her weight this way. If, in the future, her weight starts to drop, we will have to resort to the feeding tube. Please pray that things continue to go as well as they have been the last few weeks. Taylor had her next big round of chemo on September 18. We had to wait until Monday to do the chemo because her platelet count was to low on her scheduled date (September 14). Taylor handled this round of chemo with flying colors. We were only in the hospital for a few days. Now, we wait and pray that we make it through without any fever or infections during the period when her counts are low. When I took her in today, her counts were starting to drop. Her ANC was 732. This is the number used to gauge if she is at a high risk for infection. Anything under 400 is low (neutropenic). Her red blood cells were also low today. So, tomorrow she will have another red blood cell transfusion. We hope and pray that she is feeling good to celebrate her birthday on Wednesday. She is continuing the radiation treatments. Once a day as usual. She is tolerating this very, very well. She is getting used to it, and does not cry hardly at all anymore. We (Steve, me, and the doctors) have decided that Taylor will not get the radiation to her whole head and spine. We are going to give all of the doses to the tumor site instead. This means we do not run the risk of doing permanent brain damage. By doing that kind of radiation, at worst, Taylor basically could have been 2 years old for the rest of her life. It was a hard decision because, on the other hand, we run the risk of the cancer spreading to another part of her brain or to her spine. But, we believe we have made the right decision with God's help. We know that God is watching over her and guiding us with our decisions. We will have 28 treatments of radiation to the tumor site. We are currently on #18. While I am writing, I would also like to thank those who have mailed something for Taylor for her birthday. I know this is not the proper way to thank you, but I seldom get to talk to you as often as I would like. And, I don't know if I will find time to write thank you notes. I just want you to know that we received them and thank you so much. Taylor (and Ashley) is enjoying opening them!!! Thank you David and Traci, Jim and Barbi, Maria, Grandma, Aimee and Charles, and Uncle Ben and Aunt Nancy. We love you all!!!!!! September 13, 2000 Just a short note to update everyone on how Taylor is doing. Things are pretty hectic now that we have started radiation. Having to go into New Orleans everyday is taking its toll on everyone. But, as usual Taylor, our "little trooper", is continuing to amaze us each and every day. I'll begin with the last trip to the hospital. On Sunday, September 3, we had to take Taylor in to the emergency room because she had some bleeding from her left ear. It was not a lot, but withe her platelets and counts being low, we needed to have it checked out. They told us that there was no big problem, probably just a busted blood vessel. They checked her blood levels. Her counts were very low and her platelet were close to needing a transfusion. They sent us home and told us to call the doctor on Monday. Well, we made it back home, only to have to turn right back around and go back. She had a fever of 101.8 by the time we reached home. She was put in the hospital and put on IV antibiotics. The source of the fever was never found in the blood cultures. But, they usually never do because they have to start the antibiotics immediately. Therefore, the blood work never usually shows any infection. While in the hospital, she had several transfusions because her levels were so low. Taylor also saw the ENT (ear, nose, and throat specialist) while she was in. They discovered that she had lost the tube in her left ear, causing it to bleed. The bleeding caused a huge clot in her ear that they had to remove. Her ear is doing fine now, as far as we know. In addition to all of this she continued on her radiation therapy. What a trooper!!!!! We thank God everyday for giving Taylor the ability to cope with everything with such ease. Also, while in the hospital last time she went on a hunger strike. She did not eat or drink anything for a week. She was put on fluids and TPN feeding (feeding through her port). That seemed to boost her back up and she was feeling much better. However, now this has prompted the need to have a feeding tube put in. The tube will be placed directly into her stomach and we will use it when she refuses to eat. This is something we wish we didn't have to do. But, we need to keep her stamina up to keep her feeling good. We left the hospital on Friday, the 8th. We enjoyed the weekend and then it was back to the routine of going back and forth each day for radiation. She is handling the radiation very well. She cries only because she does not want to be restrained. They restrain her using a blanket that they suck the air out of to make her body immobile. And then she has a special mask that is put on her and fastened to the table. During the treatment, they play her Barney music and it seems to soothe her. The treatment lasts less than 5 minutes and then I go in to get her. She sits up and smiles at everyone and points to the cassette player wanting her tape. All in all, she handles it better than we ever expected. Thank you God, once again! We are still amazed at the fact that she has not lost her hair. All of the chemo drugs and radiation should have caused her to lose it already. The doctors and nurses are equally amazed. As I have stated before, there have been very few side effects. We are going in tomorrow and having her levels checked. If all is well, she will be admitted for her next BIG round of chemo. She will also have the feeding tube (PEG tube) put in during this hospital visit. If her counts are not where the doctor wants them, we may have to put off this treatment for a few days. Regardless, she will have the tube put in on Friday. Please pray that handles this round and the feeding tube as well as she has everything else. Your prayers mean the world to us. Each day God gives us a little miracle in one way or another. He lets us know that He is watching over out precious little girl. Now on to Ashley. She has started school and is loving it. The structure and routine are doing her a lot of good. She is going to gymnastics one afternoon a week and plays soccer each Saturday. She loves all of it. We thank God, again, for giving Ashley the ability to cope so well. The soccer games are hilarious. There are a bunch of four year olds running around, all chasing the ball. Ashley cracks us up because she is just happy to have a "shirt with a number on it". Steve's parents are still here helping us out. I don't know what we would do without them. They are a Godsend!!!!! My mom is scheduled to come in on September 25 and give Doug and Jean a break for about a week. My dad will come in on the 28th. They will stay until Sunday, and then Doug and Jean will return. It is great to have someone here at all times to help with the everyday tasks and with Ashley. Please pray that Taylor is able to be home and celebrate her 2nd birthday( September 27). We hope that she is feeling well and that she can really enjoy it. Thanks again for all of your thoughts, prayers and phone calls. We really appreciate it all. I will update again next week. Hopefully! We love you all!!!!!!!!!!!!!! August 29, 2000 Just wanted to drop everyone a short note to let know how things are going with Taylor. It has been a while since I have had a chance to sit down at the computer. And, things will continue to get even more hectic in the weeks to come. First, with the good news! Taylor had her first MRI last Monday (August 21). The results were very good. It shows no growth of the tumor so far. This is great news to us. However, we know from past histories of other kids who have had this kind of tumor, the first MRI usually come back positive. The second one usually shows growth or spreading of the tumor. The first MRI was a big stepping stone for us, but the next one will be even greater. God has gotten us this far and we know that He will continue to watch over Taylor. Taylor has finished week number 9 of her treatment. We got out of the hospital yesterday (August 28) after finishing another "big round" of chemo. She still continues to handle the chemo well. The only side effect thus far has been some nausea. But she handles it with ease, as she has everything else she has been put through. Her appetite comes and goes. She has only lost 3 or 4 pounds since starting. This is great, but things are only going to get harder when she begins radiation therapy (more on that later). Taylor will probably have to get a feeding tube put in soon. Her doctor thinks it would be best to do it now, rather than wait when things are really bad. We agree that it is probably best, because she needs the nutrition to help her fight this tumor. She has not lost any more hair. This is amazing, because most of the chemo drugs she is taking cause hair loss. Taylor had her bone marrow harvest also last week (on August 22). She had this done for future use. The doctors have taken enough bone marrow for 2 transplants and frozen it. In the future, if the tumor begins to grow or spread, she will be eligible for another treatment. This treatment involves giving her 1 large dose of chemo that will basically kill everything in her body. After she has the large dose, they will then go in and give her own bone marrow. Approximately one month after that, they will give her another large dose and another transplant of her own bone marrow. This will involve 2-3 months of Taylor being isolated in a special hospital room. During the hospital stay this time, Taylor was prepared for her radiation. On Monday, August 28, she was put under and had a special mask made that she will wear during each radiation treatment. This mask, along with x-rays, and special little tattoos on her, will tell the Radiation Oncologist where the radiation needs to be directed. We are scheduled to start the actual treatments tomorrow. She will undergo 6 weeks of radiation. Every day, Monday thru Friday. Therefore, I will be going back and forth to the hospital everyday for the next six weeks. Part of the therapy involves radiation to her whole head and spine (cranial-spinal) and part of it will be to the area where the tumor is located (focalized). She will have to be put under for the cranial-spinal, because she has to be perfectly still for this. She will have approx. 13 of these treatments. The rest will be focalized. For this, they are going to try not to put her under. They hope that she will adapt to it. However, being her mom, I am unsure how she will react. They will have to put her mask on and then tape her mask down to the table. Then, they will put her in a special blanket. They will suck all of the air out of this blanket. Therefore, she will not be able to move. The radiation treatments only take 5-10 minutes, and the doctors hope that she will be able to adjust (as most kids do) and she will not need sedation everyday. We hope and pray that she is able to handle all of this and that God will be with her. Taylor will continue on her same chemo schedule as before. The chemo and radiation combined are going to be very tough on her little body. But, we know that we have to try and stay one step ahead of this awful tumor. We also know that everything is in God's hands and that he will guide us through this. Steve and I are hanging in there. We are both tired and this change in our life is not easy to deal with. However, we know that we have to be strong and that God will continue to help us through each day. Ashley is coping very well. She will be starting pre-school next Wednesday. She is very excited and can't wait. I think that it will be good for her. She needs some structure, as there has been very little since Taylor has been diagnosed. No one day has been that same since then. However, with school, she will have Mondays, Wednesdays, and Fridays that will be the same. She has also started back to gymnastics and will start soccer this week. Thanks again for all of your thoughts and prayers. All our love July 16, 2000 Just a short note to let everyone know that we are home and made it through another round of chemotherapy. As before, Taylor handled it better than expected. She was given one new chemo drug this round and one of the others was doubled. The doctor was amazed at well she handled the first round. So before this round, he told me that one of the drugs on the roadmap (protocol) was supposed to be given at higher doses and was unsure, at first, of Taylor's ability to handle it. He then said that he knows that we have to be as aggressive as she can tolerate and decided to double the dosage of that particular drug. She handled this round almost as well as she handled the first one. She broke out with a rash during this treatment, but doctor's are unsure of the cause of it. It could have been a reaction or it could have been a viral infection. Our "little trooper" refuses to let this get her down. She continues to amaze Steve and I every day. Taylor is still making great strides in her physical rehab. She has continued to crawl and now is pulling up on furniture and "cruising". She is getting harder and harder to keep up with. Ashley is doing fine. She continues to cope each day as well. She has a baby doll named Alyssa, who she says has the same kind of "bobo's" as Taylor. So, therefore, when Taylor goes to the hospital or doctor, Alyssa goes along as well. Steve and I continue to pray and put her recovery in God's hands. We already know that He performs miracles, because each day that Taylor feels good is a miracle in its own. We also had her blessed this time in the hospital with the cross of Father Seelos. Again, we want to thank you for all of your thoughts and prayers. We love you all!!!! July 8, 2000 Today was a good day. Taylor ate a little better today. She even crawled all the way to the bathroom today for her bath. She is slowly remembering how to do all of the things she was able to do before. July 7, 2000 Taylor went in for her hearing test today. They will use it as a baseline for later. One of the chemo drugs she is getting causes some hearing loss. She still has her fussy times. We assume that she is uncomfortable because we give her a dose of Tylenol with Codeine and she is much better in about 15 minutes. Her appetite is still not good, but a little better that yesterday. TAYLOR CRAWLED 4 CRAWLS TODAY!!!!!!!!!!!!!!! July 6, 2000 Taylor go out of the hospital today. She got her dose of Vincristine, and is off the Neupogen because her counts are coming up. She is on an oral antibiotic in addition to her other meds. We took Taylor to see Dr. Eustis (pediatric ophthalmologist) today. He says that her eye problem (left eye turning in toward her nose) is related to the tumor/surgery. He says we need to wait and see if it corrects itself. We are patching her right eye, so that she will continue to use her left eye. The doctor said that if it does not correct itself, surgery can be done to fix it later. Taylor is still fussy in the morning and happy in the evening. Her doctor said that this is a normal pattern. We are using Tylenol/Codeine to help her with any discomfort she may be having. She only wants to eat crackers right now. She has begun to babble more and more. She is saying "MAMA" more now also. July 5, 2000 Taylor's ANC is up to 2000 today!!!!! Her platelets also came up to 13 today. The doctor wants to wait and see is they will go up on their own before transfusing. The doctor also switched her antibiotics today. We are still concerned that she may have an infection in the port-a-cath site. Taylor was very fussy this morning and did not eat. She was happier this evening, wanting to play. She is even starting to stand holding on to something. July 4, 2000 Happy Fourth of July!. We are still in the hospital. Her ANC is up to 370 today. But, her platelets are still low. She was going to have a transfusion, but there were no Rh negative platelets available. We will wait until tomorrow. Taylor is fussy in the morning, but seems to feel better in the evening. The MRI looked good. There is not much sign of the tumor left. She is still on antibiotics and we are still concerned about the incision from the port-a-cath site. July 3, 2000 We are still in the hospital. The blood transfusion went well. Her fever is low-grade today. Dr. Nadell (pediatric neurosurgeon) came by and said that the incision on her head looks fine. However, the incision from the port-a-cath placement is looking bad. Her ANC is up today to 98. She is still neutropenic. She also had an MRI done today to have a starting point to work off for the future evaluations. Taylor is not very happy today and did not sleep well at all last night. July 2, 2000 We are back in the hospital. The fever started again this morning. It got up to 101.9. When we got to the hospital it had gone down to 100.3. The blood work shows that her ANC is 27. Anything under 500 is neutropenic and she is at a high risk for infection. She is going to need a red blood cell transfusion this evening. She seems to be in good spirits - considering! July 1, 2000 Taylor had a slight fever today. It got up to 100.8. We called Dr. Ducos and he said to give her some Tylenol with Codeine and see what the fever does. It went down and stayed down today. She slept okay last night- up for an hour or so. She was in a very good mood today. Thank you Lord for letting her be so happy. June 30, 2000 We had a good day today. Taylor slept 11 hours straight today. She seems real rested. She did not take a nap today. She continues to play with her toys and watch Barney. She has some post nasal drip today that we need to keep an eye on. She heard music today ("I Hope You Dance" by LeeAnn Womack) and raised her arms to dance just like she used to do. That is her favorite song and it really means so much to me now to hear it. June 29, 2000 Taylor went for her chemo today. She gets weekly doses of Vincristine. Her labs were funny again. But, her counts are dropping. She only slept 2 hours last night, but seems happy anyways. What a trooper!!! June 28, 2000 Taylor slept well last night! She slept 7 hours straight. She is also starting interact more with us. She is turning pages of books and stacking her cups inside of one another. We went for a walk today. Taylor really enjoyed being outside. She seems so much happier now. Her incision is still concerning us. We will have someone look at tomorrow when we go to the clinic for chemo. June 27, 2000 Today is Ashley's, Taylor's sister, 4th birthday. Happy Birthday Sweetie!!!!!!! Taylor did not sleep well at all last night. But, now she seems to be remembering that this is her home. The home nurse started coming today to give her the Neupogen injections. The incision is still draining and we are very concerned about it. Taylor is now interested in watching Barney (her old favorite). June 26, 2000 Taylor got to come home today. It seems as she has forgotten that this is home though. She is not comfortable here at all. Her incision still looks very bad. It is draining a whole lot. But, the neurosurgeons said that it looks okay. We are all having a hard time readjusting to being home. We are particularly having a hard time with all of the medications we have to give her. June 25, 2000 They are continuing Taylor's I.V. fluids today to flush her system. They took her sutures out of her incision today. It looks really bad. June 24, 2000 Taylor's labs were funny again today. They did a finger stick and the results are okay. We seem to be getting bogus results on those drawn from her port. She is still having constipation problems. We had to use some glycerin suppositories, and she finally got some relief. She is now on Lactulose instead of the Peri-colace and Colace. She is still very bloated and swollen. She is not as fussy, but still having problems sleeping. June 23, 2000 So far the chemo is going okay. We have to take extra precautions, like using gloves to change her diapers. The Benadryl helped last night. Today she is tired, but not as fussy as she was. She has even been giving us a few smiles. The Decadron and I.V. fluids made her gain 2 lbs. of water weight. Taylor is very swollen and bloated from her head to her toes. Her labs came back very low. They re-ran them and they were okay. She began to feed herself a few crackers today. She even picked up her pacifier. She is also having a hard time getting her bowels to move. They put her on Peri-Colace, along with Colace. No results yet. June 22, 2000 We got the "roadmap" (course of treatment) today. They will begin giving Taylor her chemo tonight. She will get Vincristine and Cisplatin tonight. They will be using Decadron and Zofran to curb the nausea and vomiting. She was also put on Nystatin and Peridex to prevent mouth sores. Also put her on a magnesium supplement. Taylor is still about the same. We are going to try Benadryl to help her sleep tonight. June 21, 2000 Taylor had her port-a-cath put in today. During this, Dr. Ducos did a spinal tap and checked her bone marrow. We are still very unsure of our decision to stay here. Dr. Ducos came in this morning and talked to us. We did not realize until today that we would not use the intrathecal treatment using mafosfamide. We would have to be at St. Jude's for that. Dr. Ducos wanted to use a different intrathecal treatment, but decided to wait because of our indecision. Steve and I talked and prayed. We decided we would stay because there is no definite treatment for this cancer at this point. The children who have survived this have been treated w/o mafosfamide. We believe that God helped us make the right decision. All we know is that we have to be very aggressive in Taylor's treatment and will have to use some form of radiation. Taylor is still very fussy and irritable. Still not sleeping well. June 20, 2000 We are still unsure of our decision to stay here. We are having a hard time dealing with how fussy Taylor is. Is she in pain, tired, or what? We are trying a sedative called Atavan to help her sleep tonight. June 19, 2000 My birthday is today. This is probably the worst one I have had. We had decided on St. Jude's, but Dr. Ducos came in and let us know that he had talked to Dr. Kuhn at St. Jude's. Dr. Ducos said that we could treat Taylor here in Louisiana with the consultation of Dr. Kuhn. So, we decided to stay here. A decision was made to put in a port-a-cath for her chemo treatments. But, we can't put it in until her infection is gone. We also discussed radiation (focal) with Dr. Hawkins. Taylor is still very fussy and irritable. She is still not sleeping well. June 18, 2000 We have to make a decision by tonight. We are still leaning toward St. Jude, but very unsure about what to do. Taylor has developed a bladder infection and an infection in her blood. She is being treated with antibiotics. We are starting to use Tylenol for the pain now. She is still very fussy, although she gave us a few smiles tonight. The first ones in weeks. She is still not sleeping well. We tried Codeine tonight. June 17, 2000 We are sill battling with the decision of what to do and where to go. We have to make a decision by Monday morning. St. Jude is looking like our first choice, but Taylor and I will have to move there for the treatment. They are using a clinical trial with intrathecal treatment using mafosfamide. We are just unsure how we handle this as a family. We have Ashley to worry about also. Taylor is still about the same. She did get the feeding tube out today. Yeah!!! June 16, 2000 We started researching this kind of tumor today. What we read does not sound promising. It is very scary to look at the statistics. But, there are children who have beat this. So, there is hope. We also started looking at options outside of Ochsner (St. Jude, TX Children's Hospital, etc.) We are also getting approval to have a second opinion of the pathology report done. Taylor is still very fussy. Nothing I do seems to comfort her. Sometimes it seems like she has forgotten who I am. We are still using the Demerol. June 15, 2000 She is still in PICU today, but more alert than she was yesterday. She has tried to drink from a bottle, and seems to be having no problems. The pathology report came back today. It was news that we did not want to hear. Dr. Ducos (pediatric hematologist/oncologist) came in to inform us that things did not look good. She has an Atypical Teratoid/Rhabdoid Tumor. It is a very rare tumor and the prognosis is less that 1 year. There is no way to express the fear that I am experiencing at this point. All we can do is put her God's hands and pray! This type of tumor is also found in the kidneys, so had another CT scan of her abdomen. She was then moved out of the PICU later that day. She also still has the feeding tube. Taylor is very fussy, does not smile, and is not sleeping well. We are using Demerol for the pain and to help her rest. June 14, 2000 Still in PICU and still quite sedated. We were able to hold her today. Oh! what a feeling to hold her in my arms again!!!!! A feeding tube was inserted today because of concerns about adequate nutrition and unsure whether she will be able to suck and swallow. June 13, 2000 Taylor is still in PICU today. She has moved all of her extremities and is breathing over the respirator even more. She is very sedated. They did a CT scan of her head today, mainly to check for any major swelling or problems. They took her off the respirator late this evening. She is breathing on her own. God is good. June 12, 2000 Today was the day of the surgery. I do not think I have ever been so scared in my life. But, I know that God is watching over her and I trust that He will be with her. The surgery lasted 10 1/2 hours. She then went straight to PICU. The longest day of my life. Dr. Nadell (the pediatric neurosurgeon) told us that he removed a lot of the tumor, but could not get all of it. It was wrapped around the brainstem, and he could not get some of the tumor with out doing major damage. His opinion at this time is that the tumor is malignant. They were unable to determine what type of tumor it is at this time. More pathology tests must be performed. That night in PICU, Taylor already started to respond to stimuli and was breathing over the respirator a few times. Thank you God! June 10, 2000 Taylor is doing real good today. She is very happy and very playful. It has been a long time since we have seen her smile. Now we will enjoy the weekend before the surgery. June 9, 2000 Today Taylor had the shunt put in to relieve the swelling in her brain. The surgery lasted 1 1/2 hours. She also had the central line put in for the upcoming surgery to remove the tumor. June 7, 2000 Today was a day that changed our lives forever. The MRI revealed that she has a tumor in her brain that is covering the brain stem. They did a 2nd MRI to get a better look and to check her spine for evidence of tumors. Because of the tumor, she also has swelling in the brain due to the blockage of spinal fluid from the brain to the spine. She will have to have a shunt put in to relieve the swelling. This swelling is what is causing the vomiting. Taylor is very fussy and still very lethargic. June 6, 2000 The testing continued on Taylor. She had a spinal tap and MRI done today. Now we will wait for results. June 5, 2000 Taylor was admitted to the hospital (Ochsner in New Orleans) for vomiting, lethargy, and Bell's Palsy on the left side of her face. I.V. fluids were started and began to run tests (blood work) to find out what was wrong.