Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Cheyenne Send cards to: Cheyenne Fiveash c/o Roy Fiveash 11821 Lagoon Lane San Angelo, TX 76904 Current Page Page One Page Two Page 3 Page 4 UPDATE: 5-28-04 We are HOME! Unfortunately, Cheyenne's nausea has followed her home. Today she lost her breakfast, and then felt really bad on and off thoroughout the day. It seems that she feels fine until she eats, and then within seconds starts getting that sick feeling. This round of chemo ended the 18th, and in the past the week and 1/2 after the chemo was the worse, so hopefully this is about at the end. Cheyenne's return home had a sad aspect to it. On the 2nd day that we were gone we received a phone call that someone had accidentally left her bedroom door open. Jasmine, her beloved Gerbil, lived in her room. Apparently the cats found her and roughed her up enough that she died 2 days later. Cheyenne shed lots and lots of tears for that Gerbil. It finally subsided until we were pulling into the house, and the tears began to flow again. Today Cheyenne's report card came in the mail. Cheyenne tore open the envelope, studied it intently, and screamed, "I passed!". Now I knew that she had missed an awfully lot of school, but I did not know that her passing was in doubt. So I had her read the grades to me. All A's with 2 very high B's.. And she was worried about passing! Still no word from any of Cheyenne's doctors on the date of the next MRI or the other opinions that I sought. But, it has only been a week, so maybe next week. God Bless you all. Cheyenne's dad UPDATE: 5-26-04 After 2 short days on the beach, Cheyenne's magical time at the coast is now a memory. But the excitement and fun was so intense, you can bet that we will return as soon as we can. Cheyenne swam and played in the water every chance she would get. We visited the Nueces County Beach, Padre Island Beach, Corpus Christi Beach, and well as the beach on Shoreline Drive in Corpus. Sand, sun and water!!!!! One day we visited the Texas State Aquarium and had a wonderful time. We also intended to visit the USS Lexington (a WWII Aircraft Carrier) but time got away from us and we didn't get to make it. Cheyenne's nausea also took a vacation, with her not feeling any sickness or nausea, at least until today. We arrived back in San Antonio this afternoon and about 10 minutes after arriving, nausea hit again. Maybe it is San Antonio. Cheyenne tells us quite frequently that she does not like San Antonio. We really don't blame her, with all the horrible treatments and memories here. Tomorrow we hope to finish moving the apartment furniture to San Angelo and be back at Good Old Home by tomorrow evening. Cheyenne now tells us that she is moving to Corpus Christi!! That is how much she loved the trip and loves the coast. Thank you for all the prayers for Cheyenne and all the other children. Prayers are such an AWESOME power. They WORK!! God Bless you all. Cheyenne's dad UPDATE: 5-22-04 When Cheyenne stepped off the bus today, she jumped into the air and screamed, "YIPEEEE, School is OUT!!" My feelings exactly! Except for a short period this afternoon, Cheyenne had another very good feeling day. This afternoon it was dear old dad's fault that Cheyenne had a touch of nausea. She takes various sorts of medication 9 times a day. Some with food, some 1/2 hour before food, some on an empty stomach, so on and so on. Well, since she takes something every 2 hours, we sometimes get a little behind on our well thought out schedule. Ten minutes here, ten minutes there, turns into an hour real easy. What happens then, is that the medication that is supposed to be taken with food, is taken on an empty stomach. Well, now we know what happens. But fortunately, 3 crackers later Cheyenne felt fine. I believe Cheyenne now knows that Dad is all her's. But I don't know if I can keep up with her or keep her busy. After school today we rode the 4 wheeler twice, she went into the hot tub, and we played a game of Battleship. Not 3 minutes after finishing Battleship, Cheyenne looked at me and said, "I'm bored!". Today I finally made contact with Cheyenne's Oncologist in San Antonio. I requested to move up the date of her MRI to June and add a PET scan and Spectroscopy in an attempt to determine if there is any necrosis that might be causing her partial facial paralysis and her eye problems. He agreed to the scan and to discuss possible treatments, depending on the scan results. We should have a date by next week. Also today I emailed Dr Arthur Marlin, one of the leading pediatric nuerosurgeons in the US asking for a review of Cheyenne's MRI's and another more recent opinion on the cause of her current problems. Dr Marlin was also Cheyenne's diagnosing Nuerosurgeon. Tomorrow we are leaving for a mini vacation and will be gone 4 or 5 days. We needed to remove the remaining furniture from the apartment in San Antonio and thought we would add a few days to it and take Cheyenne to the coast. We should be walking the beach in Corpus Christi and Padre Island by Sunday. As you know, Cheyenne really, really loves the ocean. Thank you for all the prayers for Cheyenne and all the other children. I know that the following children are in need of specific prayers: LaKota starting really tough chemo in preparation of her transplant and had a pretty tough night last night; Kaidrie for her continued healing; David for the tumor progression and surgery yesterday. Cheyenne's dad UPDATE: 5-20-04 Today was a No Nausea, Feel Great kind of day for Cheyenne. It was a half day at school so she was home shortly after noon. This evening after it started cooling off (it was in the 90's here today) Cheyenne cranked up the go kart for a few spins around the house. After awhile I heard her screaming and laughing really loud. Mom was driving the go kart and it was pay back time for Cheyenne. Even though mom was driving much slower and safer than Cheyenne ever does, I guess it feels differently from the passenger seat. Cheyenne says that she thinks her mom is nuts!!!! To indicate how well Cheyenne felt tonight, I grilled ribs (one of her favorites) and she had 3 helpings, including 2 baked potatoes. Hopefully tomorrow will be a mirror image of today with Cheyenne. On the medical front, I actually got a little further regarding the HBO therapy, if needed. Today I actually spoke to the Doctor at the facility and confirmed that with a referral, they would be more than happy to have a consultation with us about treatment. But (there is always a but) he stated that since he was affiliated with Children's Methodist Hospital, they had more stringent rules than a lot of the centers regarding the acceptance of patients. Of course, like I explained yesterday, at this point we are assuming that Cheyenne's facial and eye problems are radiation necrosis related. Prior to being approved for treatment, we would have to "prove" it. The major problem at this point is that if it is indeed radiation necrosis, the sooner the treatment is done, the better chance of stopping or reversing the damage. Oh, and did I say, not one Doctor, out of all the one's we see, has ever brought up the possiblity of her problems being radiation necrosis. After we asked, they admitted that, yes, it might be. So, as we have learned, parents of children with cancer or tumors had better also be experts in the field of radiation, chemotherapy, brain tumors, etc.... Thank you for all the prayers for Cheyenne and all the other children. Tonight please remember our very good friends LaKota and David in your prayers as well as the other children. God Bless you all. Cheyenne's dad UPDATE: 5-19-04 Thank you to everyone for all the prayers for Cheyenne to feel better on this round of Chemo. She finished this round today, and had a pretty good day. I did not hear her say one time, "I don't feel so good". Your prayers worked. Thank you God and thank you everyone for the prayers. Cheyenne felt fairly normal this morning and it was off to school. She discovered that her 2 final exams are thursday and friday, so hopefully, her good feeling days will continue. The next three days are 1/2 days at school, so we will be looking for something to keep our little stinker busy and feeling good. Today was Cheyenne's sister's birthday (Diana turned 20). Diana was treated to dinner at the place of her choice tonight to celebrate and chose Ichiban Japanese Steak House. It is one of those "cook at your table and throw the utensils around quite a bit place". It was a blast for Cheyenne also and she ate really well. After getting back home Cheyenne informed me that she had math homework. Now let's see, three more 1/2 days of school, how bad could it be. NINETY PROBLEMS!!!!! We were up until 10pm doing homework. I hate to admit it, some of the questions were so difficult for me I had to guess, and by the way, I am a math person. Today I finally received an email from Duke University Medical Center regarding a few questions I had on a possible treatment for radiation necrosis. Of course at this point we have no proof that Cheyenne is suffering from radiation necrosis, but my gut feeling is that she is. Now only about 100 more hoops to jump through to determine if we will be doing it. In case I haven't mentioned it in a couple of days, our Medical situation in the United States is pretty goofed up. Thank you to everyone for all the prayers for Cheyenne and all the other children. God Bless you all. Cheyenne's dad UPDATE: 5-18-04 This morning when it was time to get up and get to school, Cheyenne was curled up in a ball with her knees up to her chin. This means in Cheyenne talk, my tummy really feels bad!! So, it was a no school day. Hopefully Cheyenne was right and the finals were not today at school. Finally at around noon Cheyenne had a few hours of feeling a little ok, and I had to drag her out of the house to do some things that I just had to do in town. Throughout the day, as long as she was busy doing something, her tummy felt well enough to not really complain, but every time we sat down, BAM the nausea came back. Right now Cheyenne plans on school tomorrow, and with the 2 final exams, I hope she feels ok to go. She did feel well enough to make it to Tennis practice tonight. Actually, we talked her into going just to watch, but when she got there she had to join in. She actually didn't start feeling too bad until right before bed. This chemo is such a strange thing. Sometimes it makes her feel really bad, but then most of the time she just breezes through it. Tonight, and over the next few days, if you have a chance please drop over and visit a few of our friends and say a prayer for them. I know that the list below looks a little overwhelming, but they are such sweet children that are fighting for their lives. When you get to know them you will love them. Craig is going to a healing service at 10am tuesday, and his mom has requested prayers during that time: Sweet little LaKota had surgery today and has some complications and is not feeling really good tonight: Haley is still experiencing seizures several times a day: Our buddy Kody is visiting his nuero/eye doctor and it would be soooo nice to get some really good news: Little Katia did not feel really good today: Connor is continuing his fight: Paulina is suffering from nausea like Cheyenne and not feeling real well: Little Maddie from Georgia is finally getting rid of the cough, but the fever is presistent: Beautiful little Emerald just received the results of the MRI and is awaiting the Doctors to get their acts together. Thank you for all the prayers for Cheyenne and all our other friends. God Bless you all. Cheyenne's dad UPDATE: 5-17-04 ONLY 2 MORE DAYS OF CHEMO THIS ROUND Today was a family day. After church and Sunday School, we drove to Paint Rock to visit my parents. Grandpa and Grandma just love to visit with Miss Cheyenne and she just loves to visit them. On the way back home Cheyenne was still feeling great, singing out loud and playing cards with her mom. Even after arriving home Cheyenne was singing and dancing, feeling Great. Shortly before 7pm the chemo seemed to hit Cheyenne pretty hard. One minute she was in the hot tub having fun, the next she was one sick little girl. After awhile we finally convinced her to eat something and eventually got her mind off her stomach by watching TV and playing cards with her. But you could still tell that her tummy felt just awful. It is a little early in the round for her to get this sick, so we are really going to watch her this round. One of the reasons that we have stayed with Temodar is because she tolerates it so very well. A very bright moment came when we first arrived home and Cheyenne noticed a message on the answering machine. Sweet little birthday girl Celeste left the most beautiful message for Cheyenne. As sick as Cheyenne was, she made it a point to call Celeste and tell her happy birthday and that she loves her. Thank you to everyone for all the prayers for Cheyenne and all the other children. A few of our friends are in need of extra prayers over the next few days and we have several that have been blessed with good news lately. Craig will be having a healing service at 10am tuesday, and his mom has requested prayers during that time. Sweet little LaKota is also still in need of prayers as she continues her fight and Haley is still experiencing seizures several times a day. Also join me in praising God for Celeste and Christal celebrating their 5th and 6th birthdays this weekend, Kaidrie improving daily, Jessie getting some really good news on her tests and for Haley's recent MRI showing a STABLE MRI. Thank you Lord for watching over all of our wonderful friends. Thank you and God Bless all of you. Cheyenne's dad UPDATE: 5-15-04 DAY ONE OF THIS ROUND OF CHEMO IS OVER! 4 MORE TO GO! We LOVE days like today. Cheyenne felt GREAT all day, and had lots and lots of fun and games. After school her friends, James and John, came over for a few hours. First they rode horses, then they rode in the go kart (all over the entire place), then it was trampoline time, and then board games. Whew, it made me tired watching them. They actually wanted to swim also, but it was real chilly last night and didn't warm up much today, so mom and dad said, "Nope"! Today they laughed so hard and so much the laughing should have made them tired. At one point when they were on the go kart and were at least 300 yards from the house, they were laughing so hard and making so much noise I thought one of them was being killed. I actually went down to check on them just to find them laughing hysterically. If I am not mistaken, the next two days are preplanned. We have full days both days. ONLY ONE MORE WEEK OF SCHOOL!!!!! Thank you for checking on Cheyenne and for all the prayers for Cheyenne and all the other children. God Bless you all. Cheyenne's dad UPDATE: 5-14-04 We have been experiencing a few power outages due to a storm in the area, so tonight's journal will be short. Cheyenne had a good feeling day all day today, no sickness or nausea. After coming home from school Cheyenne was singing and dancing, a good sign around our household. Later in the evening Cheyenne's class had a Band Concert at school. Cheyenne is first chair Baritone. For their first year, the kids were really good. At the conclusion of the concert, Cheyenne's friend, James, received the Director's Award for all his outstanding hard work over the year. Tomorrow morning Cheyenne resumes her Temodar chemo. We are praying that it is easy on her stomach this round. She seems to have a much weaker stomach since she has started chemo. We have even thought that the chemo may have given her an ulcer, as some of her nausea is accompanied with pain. TOMORROW IS FRIDAY!!!!! YIPPEE!! Then only 1 week left of school, and most of it is half days. Thank you for all the prayers for Cheyenne and all the other children. God Bless you all. Cheyenne's dad UPDATE: 5-13-04 Today started out alright, with Cheyenne getting off to school for the day. Just after 10am she called, saying that she had thrown up at school, didn't feel well and wanted to come home. When I picked her up she complained of a headache and feeling bad all over. The headache and throwing up brought on thoughts of the tumor, however after being home about 10 minutes the headache went away followed by the upset stomach a short while later. After a swim Cheyenne felt much better and dedicated her time to the art of braclet making. She felt fine for the most part of the remaining day, except for about 15 minutes just before dinner. The good news about her nausea, is that Cheyenne said she examined it, and it was Protocel lysing. As is becoming the norm around here, we needed something in town and just got back from a short Walmart shopping experience. What is it there? You can buy just a couple of things, and WHAM, it's over a hundred dollars!! In the mail today came a package from my very good friend and former co-worker Maggie, from San Antonio. So now, just in time for the remainder of the playoffs, Cheyenne has her very own Tim Duncan basketball jersey. Thank you Maggie!! I only wish I could have taken a photo of her when she opened it, jumping up and down, smiling from ear to ear and yelling!! As I type, Cheyenne is feeling GREAT, and mom has her under house arrest, sitting at the table writing Thank You letters. She is only about a month behind!!! I know that Cheyenne also has homework tonight, so it looks like it might be a late night for the little stink. Thank you everyone for all the wonderful prayers for Cheyenne and all the other children. All of our caringbridge friends need prayers every single day. I know that it is hard, because our prayer list is unbelieveably long, but it means so much to them and helps them so very much. Thank you and God Bless you all. Cheyenne's dad UPDATE: 5-12-04 Cheyenne had a Great day today, feeling great and having fun. Of course, this morning was a school day, and we barely got Cheyenne to school in time. We arrived after the first bell but before the 2nd, luckily. Diana and I picked up Cheyenne from the school bus to go into town and pick up some parts to fix the old truck that Diana is driving. While in town Cheyenne convinced us to stop by Hobby Lobby so she could buy a "couple" of colors of Craft Thread to make a few more braclets. By the time we left Hobby Lobby she had a few more than a "couple". She now has enough embroidery yarn to make braclets for half the population of Texas. After hitting the snow cone stop on the way home Cheyenne came home and swam. As dinner was almost ready she put in a movie and told us we were having "Dinner and a Movie". So, that is where she and her sister sit, watching a movie. Thank you for all the prayers for Cheyenne and all the other children. Tonight Connor is in need of prayers. Thank you and God Bless you all. Cheyenne's dad UPDATE: 5-11-04 This morning we were up early and at Cheyenne's Doctor appointment by 10am. After a short physical most of the talk revolved around chemotherapy drugs, of which none has yet to be found that meet the protocol criteria and which we would be interested in. Dr Estrada did say he would start researching Phase I trials and call us in the event he found one that sounds promising. I personally do not like or trust Phase I trials, but that is just me. It is possible that I could be convinced if there was a good one out there. I understand their use, but I don't particularly like the fact that they would be experimenting on my child. In the interim, we did decide to resume Temodar. After rethinking it, Dr Estrada feels that Cheyenne may still get some good out of it. The only symptoms noted during the physical were the one's that we were already aware of. For some time Cheyenne's left eye has been getting progressively worse and some time ago the progression started involving the left side of her face as well. The changes or paralysis is somewhat subtle at this point, but has definately gotten a little worse over the past several weeks. We are again left with the million dollar question, is it tumor progression, nerve damage, or radiation damage? Cheyenne's Doctor thinks it could be either and we spoke about doing a series of different MRI's next MRI schedule to try make a determination. If it is tumor progression, then our options might involve Phase I trials, if it is radiation damage, there is little that can be done, although I have found one possibility. Radiation necrosis stops when it wants to, sometimes reverses itself somewhat, and sometimes does not stop. It all depends on the individual and the radiation that was received. After the Doctor's appointment Cheyenne swam while we loaded most of Diana's belongings into the truck to bring back to San Angelo. It took a lot longer than I expected, and we did not get back in time for Cheyenne's tennis lesson. Oh, for you investors out there, do not invest in Claw Machine stock just yet. I am afraid that the Claw Machine market may be devastated after our trip back to San Angelo today. At every stop along the way Cheyenne visited a machine. She still has it. She added 5 stuffed animals to her collection today. It is a good thing that she sends some of them to friends, as our house is not big enough to hold all the stuffed animals that she has won. Thank you for all the prayers for Cheyenne and all the other children. Tonight when you say your prayers please say an extra prayer for our friends: sweet little Lakota and Kaidrie, Connor, and Maddies family. God Bless you all Cheyenne's dad UPDATE: 5-10-04 HAPPY MOTHER'S DAY TO ALL THE MOTHERS OUT THERE!!!! Today was one full day for the Fiveash family. We were up early this morning (but not that early) and met Christopher and his family at the San Antonio Zoo. There we walked approximately 1 million, 3 hundred thousand miles. Actually, it was lots and lots of fun, even though poor old dad could barely keep up with Cheyenne. Cheyenne had a some special fun at the Zoo today. She got a new camera yesterday and was taking photos of everything. I can't wait to see the photos. After the Zoo, and a good Mother's day lunch we made it back to Diana's apartment for SWIMMING!!! We have ordered a Pappa John's Dinner and a Movie tonight so we should have a good quiet night just hanging out in the apartment. Tomorrow is the Doctor's appointment. Hopefully we will blow this joint by 2 or 3 tomorrow afternoon and make it back in time for Cheyenne's tennis lesson. She loves her tennis!!!! Thinking about it, she loves just about everything!!! Thank you for all the wonderful prayers for our little girl Cheyenne and all the other children. Our faith is and continues to be in the Lord. Tonight when you say your prayers please say an extra prayer for our friends: sweet little Lakota and Kaidrie, Connor, and Maddies family. Thank you and God Bless you all. Cheyenne's dad UPDATE: 5-8-04 I guess it’s my turn to update, not that I believe you have to update everyday, but Roy does, and he was too exhausted, he went to bed early (12:00 midnight). I’m sure that the news of sweet Maddie took its toll on him. He called me at work and I knew he was not taking it well. Of course none of us did. I came home early so that we could get to “Relay for Life” on time. We both picked Cheyenne up from the school bus. She was smiling as usual, talking about getting home and finishing up the paintings, and finishing up Maddies bracelet to get it into the mail. (She has learned a new way of making these little bracelets by knotting embroidery yarn). We then had to tell her that Maddie was gone from us now. She got real angry and said “that was not supposed to happen.” Chey then preoccupied herself in TV land with no further discussion on the matter. She didn’t pick up any crafts to finish today. We all know that this is not supposed to happen, not to our children. We just Praise Christ for sending the Holy Spirit to comfort us. Dear Lord why can’t just one (or several thousand) live to serve, and testify of the great mercies You has shown. To the Glory of God. We left an hour or so later for “Relay for Life”. It was more of a wonderful celebration for the Survivors then a fund raiser for cancer. The people clapped and cheered the survivors walking the first lap, Roy and I both walked with Chey on her request, along with our pastor from church, pastor Chester who is also a survivor. All was good, until I noticed a woman on the side lines crying her heart out while looking at all of us with such pity; I suddenly felt the pain she felt. I couldn’t help but cry also, briefly, (without Cheyenne knowing), because I don’t want to be here, in the middle of cancer either. I can hardly believe this is now our journey too, fighting with our baby. I’m sure every parent says the same thing, “Why not me instead of them”. Only with grace of God can we endure this which is put before us. God help us! After the Relay, we went to see a movie and then for a bite to eat. Nothing was especially fun tonight, but there is always Hope for tommorow. Well, now you know why I don’t journal to often. Hope you all have a wonderful weekend. With God’s Blessings and Love, Donna UPDATE: 5-6-04 This morning started with me thinking about Cheyenne staying home for the day. Not for her, but for me. I decided it was too selfish, that she enjoys school and her friends so much. I just felt clingy today and wanted to sit and hold her and be around her all day. Only 12 more days of school left. I did get to give Cheyenne a few hugs this morning at school. She forgot something at home and called to ask if I would mind bringing it. Of course, when I delivered it I bribed her into giving me several hugs before going back to class. She probably thought I was crazy. After school, it was back into the pool. That girl could swim 8 hours a day. After herding the sheep into the pasture, Cheyenne is painting a few watercolored pictures for the Quilting Angels. I am pretty sure that their auction is in a few days so we have to hurry and get them in the mail. They are such a great organization, they help keep us going day to day and bring untold smiles to little faces daily. God Bless you all and thank you for all the prayers for Cheyenne and all the other children. Cheyenne's dad UPDATE: 5-5-04 The first thing Cheyenne told me when I met her at the school bus today was, "I had a GREAT day, How about you." I never did get out of her why her day was GREAT, but as long as it was, that is ok with me. After school, it was again swimming, swimming and swimming. She just loves to swim. And, if you are from West Texas, you know that it has been really chilly here for the past few nights, so I know that the water is COLD! Even though we live 16 miles from town, and I had already made a trip into town today, and gasoline is almost $2 a gallon, Cheyenne just had to go to town this evening. It seems that she has now decided to start making braclets to give to her friends and didn't have the materials. After a quick trip to Hobby Lobby we finally came back home just about bed time. That was when Miss Cheyenne informed me, "Oh, by the way, I have homework.". AWWGGG! Donna and I are still researhing various treatments, and talking constantly about whether we should make a few changes with Protocel. Cheyenne's next Doctor's appointment is Monday in San Antonio, and we will find out if her Doctor has any new treatments to offer that are worthwhile. Over the past couple of months Cheyenne has had a few changes relating to her left eye and left side of her face which are very scary. Fortunately, they have all been very slow and fairly minor at this point, but the fact that there are changes is really bothering us. Thank you for all the prayers for Cheyenne and all the other children. God Bless you all. Cheyenne's dad UPDATE: 5-4-04 Cheyenne was up early this morning, feeling good and ready for school. She says that she had a GREAT day in school, and felt good all day. This afternoon I was the lucky one to be able to meet the schoolbus and pickup Cheyenne. She justs makes me so happy when she sees us waiting for her. She smiles real big, jumps off the bus and always gives us a big hug and kiss. She is such a sweet daughter. After getting in about an hour of swimming, it was time to head to tennis practice. I couldn't believe that these were the same kids from last week. They improved so much, it was unbelieveable. I know with Cheyenne, we only practiced hitting the ball around twice over the past week. But it is pretty hard not having a fenced tennis court to stop the balls. Dad becomes the "ball chaser" Today was a pretty momentous day for me. A few weeks ago we made the decision that I should become a full time dad for Cheyenne. Today was my last day at work, retiring after almost 26 years. I know that I am really too young to retire, but my work at home is much more important than the work that I was doing. One thing about it, it sure made Cheyenne happy. Thank you for all the prayers for Cheyenne and all the other children. God Bless you all. Cheyenne's dad UPDATE: 5-3-04 This morning Diana had an accident in her car, no injuries, but probably 4 to 5 thousand dollars in damage, minimum. What makes this a little worse, is that this is the 2nd time, so I am sure the insurance company will not be too excited. We really didn't need the extra expense or the stress at this time. Due to the accident, Cheyenne, Diana and I missed church, but were able to meet mom afterwards to take her to a birthday lunch. This afternoon Christopher and McKayla came over to celebrate Donna's birthday. We had cake courtesy of Diana and Cheyenne. The rest of the day for Cheyenne was spent playing and babysitting with McKayla while Christopher and I worked on an old truck so Diana would have something to drive back to San Antonio this evening. This is finals week, so she couldn't be late. Cheyenne had a touch of nausea again today, right after eating lunch, but right now is in the pool having fun and taking her mind off her tummy. Thank you for all the prayers for Cheyenne and all the other children. Also remember their parents, if you will, as this is an extremely hard journey. God Bless Cheyenne's dad UPDATE: 4-30-04 This morning found Cheyenne just a little tiny bit under the weather. She said that her tummy didn't feel real good, but once she started moving around, it improved greatly. Then came Protocel time. She didn't really get sick, but she said she was just about as close as she could get without actually throwing up. This went on for about 2 to 3 minutes, until she was able to eat something, then it eased off. It was a normal day in school, and when her sister picked her up she was all smiles. Donna and I came home from work to find the porch decorated with various bright colors of sidewalk chalk. Lots of "Mom and Dad, I Love You", "I love my sister", etc, along with lots of drawings. It really brightens our day to be welcomed home to that. This evening Cheyenne has taken me on the 4 wheeler into the pasture, and had me help her target practice with her brother's old pump BB gun. No live animals, only plastic bottles. What amazed me was that she was hitting the target every time at up to 40 yards. Not bad for a 12 year old with a BB gun. Right now Cheyenne is on her bike with Mom and Diana as they take a walk. They are getting into the healthy, I want to lose weight phase. I guess I should really think about it, but not too seriously. Tomorrow is FRIDAY.....YIPPEEEE! We just love Fridays. Tomorrow something special is planned for the morning, but I don't want to spoil it for Cheyenne. Thank you for all the wonderful prayers for Cheyenne and all the other children. Thank you and God Bless you all. Cheyenne's dad UPDATE: 4-29-04 We love these days that Cheyenne feels so well. It was an enjoyable day for her, feeling great, and going to school all day. I believe she finished her Achievement tests today, so I am assuming that tomorrow school returns to normal. Since school lets out this year on May 21, it won't be long before the kids have a few days off, 1/2 days, field trips, etc. It should be an exciting next few weeks for Cheyenne, except for the final exams. As soon as I came home from work, Cheyenne, her mom and sister left to take Cheyenne to a church function. Tonight is youth lessons and activities. After the lessons I believe that they were going to Mr Gatti's for pizza and fun. It is kind of lonely around here, but they should be home soon. Today I again spoke to Dr Estrada in San Antonio. Still nothing as far as possible treatments, but we have scheduled another appointment in a couple of weeks. A very nice lady that reads Cheyenne's journal everyday sent some information on a new chemotherapy agent called Alimta (chemical name pemetrexed). It was FDA approved last month after 11 years of trials. It was approved for the treatment of Mesothelioma (a lung cancer) but has shown very encouraging results with solid tumors. I have been researching it most of the evening, but I have just as many questions now as I did before doing the research. I have access to several Medical websites and have read several of the studies. Brain tumors are a strange thing, with the brain barrier and all. I haven't found information yet on whether it penetrates the brain barrier, or whether it will affect an astrosytoma. Even though they don't classify diffuse pontine gliomas as to the type of tumor, we believe Cheyenne's is an astrosytoma by the way it presents itself on the MRI. Also the toxicity of the chemo agent appears to be fairly harsh. It has been greatly improved in the last year by including additional drugs and vitamins, but the side effects appear that they may still be quite severe, especially if the person is allergic. But, that is what the Doctors get paid for. We do the initial research and bring it up to the Doctor, but it will be Dr Estrada that does the intense research to see if it is plausible, and determine the risk versus benefit. But in the end, it is still our decision as parents, so it is good to be informed. Thank you for all the prayers for Cheyenne and all the other children. I understand sweet little LaKota is having a few difficulties after her surgery, so please remember her in your prayers. Again, Thank you and God Bless you all. Cheyenne's dad UPDATE: 4-28-04 Today was another school day for Cheyenne, taking an Achievement test all day. Tomorrow Cheyenne expects to finish the acheivement test, then I guess it will be back to school as normal, homework and all. Can you tell that I am not that fond of homework?? After school, Cheyenne did not have anyone over, and she didn't go to anyone's house. A very different day!! So, this evening it was mom and dad time. We actually like to have more time with her, but she so enjoys her friends, and we can't rob her of that. She swam, rode her bike, practiced tennis, and drug us into the house for games, and more games, and more games, and more games........ Today Dr Estrada, Cheyenne's oncologist called. He has not yet found any promising treatment in case the tumor has recurred, although he is still looking and calling all over the country. We spoke at length about various treatments. He agrees with me that a Phase One trial is not an option at this time. Generally the big hospitals try to sell the Phase One trials, but in essence they are only guesses, and generally just to attempt to determine the toxicity levels that children can take, dosages, etc. Since Cheyenne's symptoms really have not worsened over the past few weeks, he was reconsidering continuing the Temodar. However, we finally decided that we would hold off all chemo for awhile to let her little body recuperate from the last 10 months of chemo. If additional symptoms appear or current symptoms worsen, he would recommend restarting the Temodar again. Thank you for the prayers for Cheyenne and all the other children. Please say an extra prayer for sweet little LaKota tonight, that her one kidney starts growing and picking up the job of the one that had to be removed. Again, thank you and God Bless you all. Cheyenne's dad UPDATE: 4-27-04 Another good school day with NO HOMEWORK. Since the kids are taking an Achievement test over the next couple of days, I am assuming that we have a few days off from homework. When I came home from work, there was Cheyenne in the pool with a friend, splashing and laughing. If you remember, when she was first diagnosed, she was in the pool everyday. I believe the pool is her escape, therapy so to speak. Even during the worse days of radiation, she could jump in the pool and have fun. Today was the first ever tennis lesson that Cheyenne has had. Even the first time she has picked up a tennis racket. You know what, for the first time, she didn't do too bad. It might be a few months before she is ready for the Wimbledon, but you have to start somewhere!! I can't thank you enough or explain how much the prayers that you offer help Cheyenne and the other children. Thank you and God Bless you all. Cheyenne's dad UPDATE: 4-26-04 Today was another one of those active and busy days for Cheyenne. Fortunately for the whole family, since we were up so late last night, there was no Sunday School this morning. So we were able to sleep in a little later than normal, making it to church by 1030. By the time we arrived home from Church, Cheyenne was ready to hit the swimming pool. Shortly afterwards, her friends James and John came over and they swam all day. Now the bad news of the day is that even though we bought suntan lotion at Walmart before coming home, Cheyenne forgot to put it on and was burned pretty badly this afternoon. Hopefully she won't be in much pain tomorrow. This evening we made it to Cheyenne's brother Michael's house for a birthday party for Bryce. Bryce turned 9 today. We ended the day at the party, getting home just in time to get the little stink in the shower and in bed by 1030, only 1 1/2 hours late. Cheyenne is already looking forward to tomorrow evening. Her first tennis lesson ever is at 7pm tomorrow. This should be interesting. Thank you for all the prayers for Cheyenne and all the other children. Prayers work. Miracles do happen. Thank you God for all our Blessings. Cheyenne's dad UPDATE: 4-24-04 This morning on the way to school, Cheyenne said she just not feel real good, so we came back home and made a day of it. This gave us the opportunity to go with Diana apartment shopping this morning, and hopefully we found a good one. She will not move back until this Semester is over at UTSA which is the first week in May. We have missed her so much the last year, even though we really saw her almost every weekend. It will be so nice with Cheyenne having her big sis right here in town. After getting back home, Diana could see that Cheyenne was a little bored, so they did a little trampolining together. There were lots of giggles and laughs, and fortunately Diana did not break anything. Cheyenne basically spent the rest of the day in the pool. First by herself, then I joined her, then her friends James and John came over for a few hours. Cheyenne is a regular little fish. Thank you for all the prayers for Cheyenne and all the other children. They help me as much as they do Cheyenne. God Bless Cheyenne's dad ADDED: 11-07-03 Cheyenne was diagnosed with an extremely rare inoperable brainstem tumor (diffuse pontine glioma) on July 09, 2003. Cheyenne began 36 treatments of radiation and many weeks of chemotherapy treatment on July 28th, 2003 in an attempt to slow the progress of this tumor . In addition to standard treatment, Cheyenne also began an Alternative treatment of PROTOCEL soon after diagnosis. CLICK HERE FOR INFORMATION ON A DIFFUSE PONTINE GLIOMA CLICK HERE FOR INFORMATION RELATING TO OUR CHOICE OF PROTOCEL AS AN ALTERNATIVE TREATMENT.