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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
UPDATE: 11-4-04
Today was one of those “Cheyenne” very, very busy and special days. I know that our pumpkin was grinning from ear to ear today looking down on us from Heaven.
Today’s Service was sooo special, with soooo many things happening, all for our little sunshine.
To begin with, at the beginning of the Service, as far as you could see were cars and buses. Hundreds upon hundreds of friends, family, and loved ones from every walk of life turned out to say goodbye and to honor our little girl.
The San Angelo Police Department posted their Honor Guard at the door for Miss Cheyenne and provided a motorcycle escort all the way from the church to the cemetery.
The Service itself was 100 percent Cheyenne. Her music and everything. The Christian music that saw her through her radiation treatments, the songs that daddy taught her to play on the keyboard, her’s and her sister’s song, her’s and her moms songs, again 100 percent Cheyenne. Rememberances from church as well as caringbridge friends, karate friends, and family. I am sure Cheyenne loved it! Even the “Pancake” story came up! Daddy wore his “Superman” tie, which has special meaning to the two of us. Of course I had to explain it to several people!!
Mom, Dad, Michael, Christopher and Diana set up rememberance tables in the church. Cheyenne’s trophies and awards, her ASU jersey, all her Karate things, her “love” quilt from school, her Deputy badge and credentials, just about anything that was really, really special to Cheyenne, and tons and tons of our favorite photos.
The “GIRLS” from San Antonio were there. Cheyenne would have loved to have taken them out to lunch!!
The ASU Rambelles Basketball team was there honoring their newest recruit, # 00.
The ASU Rams Basketball team was represented.
Former Mystic Slates teammates were there saying goodbye.
So many schoolmates, from all grades, and the faculty were there. All her classmates wrote “rememberances” and presented them to mom and dad.
The High School Football team presented us with a beautiful football, autographed by every team member.
The San Angelo Firefighters were represented.
There were current and former Law Enforcement officials from almost every state, local and federal agency, from all over the state, there to say goodbye to our pumpkin.
Constable Matthew “Nite” Marshall, of the 4th Precinct in Bexar County, Texas (San Antonio) brought an entire contingent of Deputies. They led the procession to the cemetery for their little Deputy, issued and read a Proclamation for our baby, and presented mom and dad with a flag that was flown over the U.S. capital during the Service.
Cheyenne was honored with SIXTEEN Black Belt Karate Pall Bearers. There were representatives from many other Karate schools, as well as almost every member of her Karate School and the Tang Soo Do Karate Association.
AND, today Cheyenne was presented with the HIGHEST HONOR IN KARATE. The rank of 1ST Degree Black Belt, Dan # TKA-4493-73. The certificate reads: CHEYENNE MARIE FIVEASH For demonstrated proficiency in American Tang Soo Do. Awarded under the Seal of the Tang Soo Do Karate Association this 30th day of October, 2004. The person named above has shown the eternal spirit of a warrior and is awarded the highest honor in American Tang Soo Do. Along with the certificate an embroidered black belt with Cheyenne’s name was presented to mom and dad.
When it came time to head off to Cheyenne’s resting place, I know she had to smile. There were her friends from the Los Carnales Motorcycle Club, the Christian’s Motorcycle Club, and the Survivor’s Motorcycle Club. The Harley’s were ROARING!!!!!!!! They even had a special place in the procession, right there with the family.
Cheyenne’s earthly body is now at rest, while she flies and plays in the Heavens. I am so, so, happy for her, and at the same time I am hurting so very much. I am sure that as long as I am in this earthly body, there will never be a moment that I am not in excruciating pain of not being with her. Words can’t describe it, so I won’t try. Unfortunately, so many of you know the pain.
I want to personally thank each and every one of you for all the wonderful prayers that you have offered for our beautiful Cheyenne and our family, as well as all the other beautiful children. Please do not stop praying for our friends. Prayers are answered, just sometimes they may not be answered the way that we desire.
There was a time that we didn’t even consider the what if’s, or the tomorrows. Then we were thrust into the world of Pediatric Cancer and Brain Tumors. Our life began day to day. Then it became hour to hour. Then it became minute to minute. What we would give for just one more minute!!!! But, now Cheyenne is at complete Peace, Joyful, Happy, beyond belief. She is sooo wonderful, we can not even comprehend. Someday! Someday!! Until the Lord decides it is our time. Then we will join our little girl and we will understand. It is the days, hours, and minutes between now and then that are on my mind at present. Without the Lord it would be impossible. At present, it even seems impossible knowing the Lord. Please keep our entire family in your prayers. Mom, Dad, Michael, Christopher, Diana, Grandpa and both Grandmas, Bryce, Alyssa, and especially little M&M. Poor little Mckayla, she misses her Aunt as much as I do, and is too young to understand..
Cheyenne's PROUD daddy, Forever!!!!!!
UPDATE: 10-31-04
Cheyenne Marie Fiveash
09/23/91 - 10/30/04
Services to be:
10am Wednesday, 11/03/04
Trinity Lutheran Church
3536 YMCA Drive, San Angelo, TX
76904
Followed by burial at Lawnhaven Memorial Gardens
4989 FM Highway1223
San Angelo, TX 76905
Our baby, Cheyenne, is currently resting at Johnson’s Funeral Home
435 W. Beauregard, San Angelo, TX 76903
UPDATE: 10-30-04
This morning at 1:06am, the gates of Heaven opened wide for our little pumpkin, our beautiful young lady, our little Champ, Miss Cheyenne Marie Fiveash. She has won her last battle and her trophy is everlasting life. We are completely without words to describe our emptiness and profound sadness to have to say goodbye to our sunshine. Our world will never, never be the same, and we will miss her every second of every day. She was the most wonderful daughter, sister, aunt, cousin, granddaughter, niece and friend one could ever have. But she was also the daughter of God, who decided it was time to call her home, leaving us here on earth to wait for our homecoming and reunion.
Before she left us today she was her loving, caring, and smiling self. As sick as she became this afternoon and evening, she made a point of telling every single family member in the house, including little Cinnamon Sugar, that she loved them, sharing those hugs and kisses that we are already missing horribly. Even though she could barely speak, she made sure everyone in the room knew about dear old Dad’s pancake mishap a few days ago. That’s our little stink! We don’t know how we can live without her!
Arrangements have not yet been made, and information will be posted later.
Cheyenne’s Proud Mom and Dad Forever
UPDATE: 10-29-04
Last night was a really rough night for our pumpkin. Her lungs began to fill with fluids late last night and it became pretty hard for her to breath.
Today, thanks to Nurse Holly, Cheyenne is on medication to dry up the fluids in her body, on oxygen therapy to make it easier to breath, and taking breathing treatments which will hopefully assist in clearing the lungs. We are hoping that she starts resting comfortably tonight, although the medication really hasn’t had time to do its magic. Just the oxygen makes a difference.
She did ask for one of her famous outings today, although you could tell that she was really tired and weak. The outing wasn’t much to speak of, but made Cheyenne happy. We drove into town and bought her a cherry icee.
This evening both of Cheyenne’s basketball Coaches came over for a visit. Coach Slate (of Cheyenne’s former team, The Mystic Slates) and Coach Brooks of the ASU Rambelles came for a nice visit, even bringing Cheyenne egg drop soup. The Rambelles play a scrimmage this Saturday, and if Cheyenne is feeling up to it, they have a place reserved down next to the bench waiting on her.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
Cheyenne’s dad
UPDATE: 10-27-04
After a very long and stressful night for mom and dad, Cheyenne woke up feeling just a little stronger and better this morning than the past 2 days. She was actually able to eat scrambled eggs this morning for breakfast, which was a major improvement over the night before.
Tonight Cheyenne is again very tired, and is experiencing the majority of the problems that have manifested themselves in her over the past couple of days, but still, not quite as bad.
Also tonight Cheyenne has good reason to be tired, as today was a steady stream of visitors. The poor little stink really became overtired today, even if it was just sitting in her chair trying to listen to everything going on around her.
Among many others, both Pastors from church came by to visit, to pray with us and bring communion for us all.
This evening , my baby finally broke down and started crying, and told me that she wanted to be able to eat again, to walk again, to see normal again, and to smile again. I cried with her and told her that we are doing everything in our power to get her on that road. She is the most wonderful young lady. Donna and I have been so blessed to have 4 of the most wonderful children in the world. Truthfully, we could not have been more blessed.
Please continue to remember our pumpkin in your prayers as well as all our other friends. I understand that Cheyenne’s friend, Justin Tackett from San Angelo, went to be with the Lord yesterday, so please keep his family close in your prayers as well.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
Cheyenne’s dad
UPDATE: 10-26-04
First of all, Thank you, Thank you, Thank you for all the prayers and wonderful guestbook entries. Hopefully Cheyenne, mom and I will have an opportunity to read them together tomorrow.
Today was another one of those long days but it was a pretty quick trip to San Antonio and back. We actually arrived back at 6pm, but have been without power until a few minutes ago.
Although today was not full of good news, we are putting our faith, trust and lives in the hands of God and continuing to pray for healing for our beautiful young lady, Cheyenne. We will never give up hope and never give up faith!!
Medically speaking, as we anticipated, there are no other proven options for treatment of this tumor. There is one Phase I clinical trial by the Pediatric Brain Tumor Consortium that Cheyenne “might” qualify for. It consists of a chemo drug used in adults for other types of cancer, has not been tried on brain tumors, unsure if it breaks the brain barrier, and has not been given to pediatric patients prior to this trial. This trial is to attempt to determine dosage and chemo toxicities, and to see if there is any benefit to brain tumor patients. We attempted to contact the Dr in charge of the trial in Houston, TX all day today, but as of yet have not heard from her. From everything that I have learned about trials, if Cheyenne was accepted, it would probably be at a minimum 1 ½ to 2 weeks prior to beginning. For children with this tumor, and for children as sick as Cheyenne is, that is a lifetime, plain and simple.
After meeting with Dr Estrada, we reached an agreement that the first chemo, and the only chemo that Cheyenne has had that appeared to work, may still have some effectiveness with this tumor. So as of tonight, Cheyenne resumed taking Temodar and is combining it with Celebrex to help its efficacy. Basically, it was this or nothing. The good news is that there have been some adults and children that have been off Temodar for a while, similar to Cheyenne, and then showed some positive results when put back on. Of course no chemo lasts forever, the tumor becomes resistant to it eventually.
Cheyenne is continuing having a great attitude, although her little body is failing from this tumor. Over the past 1 1/2 days Cheyenne has become very tired, weak, and several symptoms came on very suddenly. The steroid is not seeming to hold off this beast as it did a week ago. But she is a very strong spirited and strong physically. At the Dr’s office Cheyenne was very, very sick and very, very weak. Within an hour of leaving some strength had returned and she was her laughing and smiling self. We just never know what the next day will bring.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
Cheyenne’s dad
UPDATE: 10-25-04
Today was another one of those not so good days. Over the past few days, it has become fairly apparent that the Zarnestra chemo trial is most likely not working. Old symptoms are getting worse and new ones are beginning.
We have a Dr appointment with the Oncologist in San Antonio tomorrow. I have no idea what to expect. I do know that medically, we have most likely run out of options.
Also I recently went through all the trials in the United States and, other than the Zarnestra trial, I did not find one that Cheyenne would qualify for.
We will never, never, never give up hope. We will continue to ask God for a miracle here on earth for our baby, and we will continue any manmade treatment that is reasonable.
Since writing the above, I have discovered a few new clinical trials that Cheyenne "may" qualify for. Please continue to hold us up to the Lord in prayer.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
UPDATE: 10-22-04
Today Cheyenne was the proud recipient of an absolutely beautiful shawl presented to her by members of the Christoval Methodist Church. The church just started a new healing outreach program, knitted this beautiful shawl, anointed it with oil, and prayed over it for Cheyenne’s healing. Mrs Lambert, who delivered it to Cheyenne today, said that with each stitch she said a prayer for Cheyenne. Hopefully, Cheyenne will wear it Sunday to church.
Today was Cheyenne’s Grandpa’s (my Dad) 85th birthday. The entire family, kids and grandkids, all spent the evening and most of tonight celebrating at their house in Paint Rock. The best part of the night was watching my dad and Cheyenne. They spent well over an hour huddled in the kitchen, talking, laughing, and just having a wonderful time. Cheyenne sure thinks a lot of her Grandpa and he of her.
Health wise, Cheyenne was pretty tired this morning and afternoon, but her energy really picked up this evening when she was with Grandpa. We were going to start her steroid taper today, but she complained once of a short headache when she sat down hard in her chair, so we will probably wait another few days just to see.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
Cheyenne’s dad
UPDATE: 10-21-04
Today was a pretty good day for Cheyenne. Of course, it would be much better if she were able to just get out of the wheelchair and take off running, but we are working on that. Since putting her back on the steroids, she improved quite a bit and is now holding steady. Most importantly, she has no headaches and her GREAT sense of humor is back.
It seems that generally, the funniest things happening around here lately, are all related to me. At least so Cheyenne thinks.
For the past 4 days Cheyenne will be sitting there, and then without warning start laughing and giggling out loud. This happens several times a day. Only today did I find out what was so funny. Several days ago mom made pancakes for breakfast. I fixed mine all up the way I like them with butter and syrup, and went into the living room (I know we shouldn’t be eating in the living room) to join Cheyenne. No sooner than I sat down, a big sneeze came on. Well, as my luck would have it, I sneezed, my hand jumped, and the plate of pancakes did a somersault in the air and landed upside down on the floor. I didn’t think it was so funny, but Cheyenne still does. The little stink!!
Today, to allow Cheyenne to escape from the house, we all went into town to drop a vehicle off to be repaired. Again, as my luck would have it, both of our vehicles need repair at the same time, so we are taking turns dropping them off. Anyway, it was in the middle of the afternoon, and since Cheyenne has been on steroids, she enjoys a 3pm snack each day. Normally Cheyenne insists on the snack being vegetables or fruit, since a girl on steroids has to watch her weight, you know! Well, as a treat, I took Cheyenne to a local restaurant that serves a dessert called a Cookie Monster. Cheyenne just loooooves those, and has been talking about them for weeks, but didn’t want to ask to eat one.
After the three of us shared one and we were on the way home, Cheyenne started that laughing and giggling again. By now, I just assumed that she was again laughing at dear old dad for the pancake mishap. Then the little stink mad this noise like she was in pain and I quickly looked over at her. She was holding her lips with both hands and had this strange look on her face. Well, when I asked her what was the matter, she started laughing again, and said, “ Cookie Monster, I am just trying to keep myself from GRINNING too big, IT WAS GOOOOOOD!!!”
Now you know why I often refer to my pumpkin as a little stink!!!!!
Also, before I forget, I need to publicly thank one of Cheyenne’s Tumbleweed friends. Arabella Uhry, who is not much younger than Cheyenne, sent Cheyenne a Cookie Bouquet in the mail today. Thanks Arabella!! Of course, we might have to hide it from Cheyenne, it is AWFULLY GOOD!
And, over the past couple of days Cheyenne has received not 1 but 2 of the most beautiful handmade quilts in the world in the mail. One from Mary of Tumbleweed and the other from Justyn’s family. You will not believe how beautiful these are. We hope to put some photos up as soon as we can of Cheyenne all snuggling in them…. She is going to be a warm little girl (young lady) this winter!!!!
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
UPDATE: 10-20-04
This morning Cheyenne actually slept in. Now, as of late, this is really something. She normally awakes around 5 to 6 am and today she actually slept until 10am. WOW!! Of course, here it is 9pm and she isn’t even tired yet, so I bet we are up late tonight.
Today Cheyenne seemed to be a little weaker early, this as the day wore on she became stronger and stronger. By late this evening even a few of those minor symptoms that she has been putting up with seemed to go away.
Apparently, today was not busy enough for our girl. Pastor Chester came over for a visit, and I heard Cheyenne tell him that today she was bored, “WITH A CAPITAL B”.
Sooo, as soon as Pastor Chester left, Mom and Dad loaded up Cheyenne in the wheel chair and took another one of those strolls around the place. The weather was not too cool or hot, so it was really nice outside. We spent quite awhile just enjoying each other’s company. While we were visiting the horses, Cheyenne’s horse, BlackJack, walked up to her and gave her a GREAT BIG SLOPPY KISS on the cheek. Chey got a big kick out of that! I can’t wait until Cheyenne can ride again. She has not ridden BlackJack since the end of August and really misses it.
Late this evening, we loaded up our big shrimp eater, and went to Red Lobster to meet Coach Slate and her family, Big Sis Diana, and Brother Christopher and his family. Cheyenne and I ate shrimp until we felt like we were going to pop. But the best part of the whole thing, was that once Cheyenne found out we were going to Red Lobster to meet everyone, someone must have flipped her giggly switch. EVERYTHING was funny. We laughed all the way there. It does old mom and dad’s hearts good to hear that laugh. BETTER REPHRASE THAT!!!! It does mom and old dad’s hearts good to hear that laugh! That’s better and won’t get me in trouble.
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
Cheyenne’s dad
UPDATE: 10-19-04
Today Cheyenne felt better than yesterday, but a few of the symptoms are hanging around. The good news is that the headaches are completely gone, even when she has one of the sneezing or coughing episodes. We have been trying various over the counter medications to see if any would help with the tickling sensation in her throat. So far, Choloraseptic seems to work by numbing the sensation when it starts.
It is amazing how fast some of the steroid side effects return. Her face already seems puffed and blushed, where it was almost normal yesterday.
While I had to run errands most of the day, Mom and Cheyenne scrapbooked their hearts out. They have turned the living room into a scrapbooking room. And I think it is GREAT!!!
I guess I should clarify something that I often write in the journal. I frequently refer to Cheyenne as my little pumpkin, my sunshine, my little stink, my little girl, my baby, etc. Well, she is all of those, and will always be, just flat and simple. But in honesty, she is an awesome young lady. She has poise, dignity, character, and a wonderful sense of humor. She is extremely courageous, honest, considerate, generous and one of the most loving young ladies I know. I admire her for who she is, a young lady, but still my baby!!!! It seems like yesterday she was my little girl, boy has she grown. She is such an inspiration to us, and I know many more. And the most amazing part, through all this adversity, she continues to grow to become more of a beautiful young lady. I love ya girl!!!
Thank you for all the wonderful prayers, thoughts, guestbook entries, cards and emails. They always are wonderful, but during the tough times they keep us going day to day, hour to hour, minute to minute. Thank you. Also thank you for remembering all our friends out there who are also traveling down similar journeys.
God Bless you all,
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.
 
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