[GoFundMe Update 31 Aug 18] --
It would seems Damon, even in death, has a knack for timing. Join our family at Holy Cross Cemetery [Address: 17501 Nacogdoches Rd, San Antonio, TX 78266], Saturday, September 1st at 5pm as we unveil Damon's headstone.
Damon was very much a Super Hero and his headstone design is fitting for someone as unique as him. The headstone was designed by his father--Brian to ensure Damon's personality & strength showed through.
It's a fitting day since Saturday, September 1st will be the First Official day to kick off Childhood Cancer Awareness Month. Please join his family & friends as we not only unveil his headstone, but celebrate his life as well.
Damon won his battle with cancer, but lost his life doing so on Tuesday, April 3, 2018 at the very young age of 13. Damon was a Brand Ambassador for American Childhood Cancer Organization
| Epitome of Courage from the Sarcoma Foundation of America, Inc.
| All American Boy as featured in his Comic Book from Jumo Health-Medikidz
| A 'Super-D' to Teed Off at Cancer's Speakeasy Soirée 20th Anniversary
| A Firefighter to the San Antonio Fire Department
| A Hot Shot to The Ferrari Kid
| A Loved & Cherished Celebrity to A Shelter for Cancer Families
| A favorite patient & Philanthropist to University Health System
where he would sadly end his life. He actually was their very first Pediatric Cancer patient when they opened the new wing.
Damon was many things, but the thing we are most proud of him for is being a Loving Son, Beloved Twin and an Awesome Brother; not to mention incredible grandson, nephew, cousin and friend. The one thing he was to all was an Inspiration!!
Strength isn't measure by how much one can lift.
Strength is measured by how much one can lift others!--Damon Billeck
[GoFundMe Update 07 May 18] --
Happy 14th Birthday to Dara & Damon Today!
To say life has been difficult since Damon passed away would be a HUGE understatement. So many things become that much harder. Just ten days after Damon passed away and just a few days after he was laid to rest I was to celebrate my 50th Birthday. Brandon came down and the kids took me out--so they made it easier.
Then a vendor here at Traders Village (Andy's Treasure Chest) hosted a private screening of "Infinity Wars." [Chris Evans (a.k.a. Captain America) was going to fly Damon and I to L.A. to attend the Premiere. He had even told the other Avengers that Damon would be standing in for him as Captain America since he would not be there due to his commitment to "Lobby Hero" he is performing in on Broadway.] Kids and I went to see "Infinity Wars" and I was doing well until Chris came out from the shadows and I lost it. Had to leave...it just wasn't the same seeing it without Damon. Andy Vargas even had a moment of silence for Damon before the movie started.
Now we are here today....Dara & Damon's 14th Birthday! We knew it was going to be hard on Dara so Lisa and the boys took Dara to the coast for the weekend. Dara invited her friends and they had a wonderful time. Even Lisa had fun....today is tough on her too because 14 years ago she held twins in her arms and today, she can only hold one.... Her and Dara are taking today to hang out together and try to smile.
￼I told Dara that when Damon and I spoke before he passed, he knew he was dying. One of the things he told me was "Tell Dara I will be with her on our bithday." So this morning I told Dara, ask Damon to send you a sign he is with you and he will show you. This morning in the car she was goofing with snapchat and the 'duel' filter caught another person in the picture...only there was no one there. Well...none that you can see. After she took the photo she said "Happy Birthday Damon--I Love You."
We would like to take a moment to say THANK YOU! Thank you to everyone for the Love | Support | Letters | e-mails | cards | dinners | calls & texts.....Thank you!!!
There is is no way any of us could have gotten through this without you all.
We found a nice place for Damon at Holy Cross Cemetery. Today, since it was also Damon's birthday, we took him some Avengers balloons and laid two dozen yellow roses in the shape of a Cancer symbol to honor him.
￼Then Dara, Lisa & a friend Chystal visited Damon and laid 14 White roses (Dara's favorite) with Damon.
Lisa has moved everything out of the apartment they had for over two years thanks to A Shelter for Cancer Families. It was very hard for her. We still have expenses in paying his hospital bills (yes even after his death) and the headstone. We didn't want to get a generic one. Damon didn't deserve that. I'm going to design it.
A very close friend of Lisa & her family has offered a match (up to $1,000). So if you donate $5 it becomes $10. If you donate $20 it becomes $40, etc. He said he wanted to help and this was his suggestion to do so. So thank you very much!
For those that didn't see his casket....now, it may seem odd to get excited about his casket. But we made sure Damon went out fitting a True Hero.
For those who like to see some photo from the funeral and news stories about Damon's passing, a friend of mine on twitter who runs Chris Evans Forum put this together: http://chris-evans.boards.net/thread/264/damon-billeck
Also, here are a few pictures of Dara & Damon as they celebrate their Birthday.
Lisa is going to stay home this Summer and spend it with the kids. She will go back to work after that, but she wants to have the Summer to get to goof off with them and I think it's great!
Thank you everyone for the continued support. We need it. We are being strong to honor Damon and his bravery. But it certainly isn't easy! We lost our Captain America and we'll never get him back. But we feel you Damon and we know you have not left us!! Here are some pictues Donald Xavier Photography did of Damon.
"Strength isn't how much one can lift....
Strength is how much one can lift others!"
[GoFundMe Update 06 April 18]
-- Thank you for the outpouring of love & support for Damon & our Family!
Information on Damon's services:
Viewing/Visitation will be at:
Schertz Funeral Home:
2217 FM3009 / Schertz, TX 78154
Phone: (210) 658-9224
Visitation / Viewing:
Sunday (4/8) -- 4p - 8p
Monday (4/9) -- 4p - 7p
Rosary (4/9) -- 7p
Church Service (Tuesday, 4/10) at 11:00 am:
Our Lady of Perpetual Help
16075 N Evans Rd / Selma, TX 78154
Graveside Service will follow at:
Holy Cross Cemetery
17501 Nacogdoches Rd / San Antonio, TX 78266
The San Antonio Fire Department is giving Damon a Fire Truck procession to the graveside and a Honor Guard.
We are also coordinating a "Celebration of Life" in honor of Damon Enrico Billeck. This will be something fun for the kids, a gathering of friends and a Celebration of Damon. This will be Sunday (April, 8th) at Damon's FAVORITE place: Monster Mini Golf
2267 NW Military Hwy, San Antonio, TX 78213
Time coming soon.
In lieu of flowers: We ask that you donate to
A Shelter For Cancer Families
in Damon's name.
They have been there every step of the way for us and provided us housing for several years.
We have been flooded with people asking to bring food to the house and that is SO wonderful! Our good friend Valerie Gamez has asked coordinate the meals. Please reach out to her: (210) 589-0203.
Our expenses will still be to pay hospital bills, but now we have the added expense of funeral arrangements.
Thank you everyone for the outpouring of support & love. We have not had an opportunity to read them all. They are so many, which warms our heart to know how great of an impact Damon had on the world! Plus, reading through them is extraordinarily difficult right now. We will read every one eventually though. Just know we see your name and know you are there!!
Damon was a special soul and a person you were lucky to meet, fortunate to know and grateful to read about. He was our Son, brother to Brandon & Stephen and Dara's twin. He was the world's True embodiment of Captain America!
Chris Evans (aka Captain America) said it better than I -- "Damon had the kind of strength I only pretend to have on screen," Chris wrote. "He was a true warrior: Brave, Selfless, Compassionate, and Proud. I feel so grateful for his friendship. Sending all my love to you and your family."
Some stories on Damon:
News 4 San Antonio:
A Shelter for Cancer Families:
93.7 KLBJ-FM (starts at about 7:30):
More details to follow! God Bless!
[GoFundMe Update--29 March 18]
-- Damon's condition is worsening, but we're NOT giving up!!!
Lisa and I (along with Damon and Missy from A Shelter for Cancer Families) met with the doctors last week and there are not many options left to treat Damon.
He's hurting because of his back. When we did the photon radiation on the tumor near his throat awhile back the radiation caused his vertebrae to collapse. This collapse has caused calcification around the bones and it is pushing on his spinal cord. If we don't do surgery it could cause paralysis.
After we discussed the surgery, we inquired about the tumors in his lungs. That is when we could literally feel a dark veil cover the room. The doctors feel there is very little that can be done to treat his tumors. Damon's osteosarcoma has just mutated around every chemo we have thrown at him.
If we proceed with the back surgery, the chances of him spending a considerable amount of time in the hospital is high. Too high for us! Plus, his body is already weak.
We do not wish for him to spend all his time in the hospital and neither does he. Besides, Damon is looking forward to going somewhere. A certain Amazing person has offered to fly Damon and I to LA to attend the premier of Marvel's "Infinitiy Wars." Not only that, but give us tickets to the VIP party and let the other Avengers know Damon will be there. This is something we will NOT
miss!!! If I have to carry him to it, I damn well will!!!
Since we decided against the surgery, Lisa pushed the doctors for another chemo treatment. They don't feel it will do much, but then they don't know it wont. We are NOT giving up. Damon told us he's tired of fighting and Lisa said, "Then rest....I'm fighting for you now!" And she is!! We are looking into alternative treatments and NOT
Please everyone...do NOT
give up either. We ask this: If you are going to pray for Damon...please tell God to give him strength, remove the tumors and remind God what Damon means to you. If he inspired you, please tell God. If he made you happy, tell God. Our wish is for everyone to remind GOD what this young man is and could do to proclaim his glory. Yes, we are praying for a miracle...but miracles DO
happen, and we are ready for his!!!
Brandon, Stephen and Dara are aware and are standing by his side dedicated to keeping him here with us too. Lisa and Damon still travel to Houston weekly, so it's tough. If you want to drop of a dinner to the house (because some have asked), yes! thank you! If you want to just pray---THANK YOU!
"I (he) will not die, but live and declare the works of the Lord!" Psalm 118:17
On a lighter note, Damon was invited by The Cake Boss--Buddy Valastro to join him for the Buddy V's Grand Opening, a preview party of Carlos Bakery and even stopped the ribbon cutting, to make sure Damon was standing by his side to cut the ribbon to the newest store. It was a huge highlight for Damon. Buddy y la famiglia are a Class Act!!!
￼___________________________________________________________[Go Fund Me Update--15 March 18]
-- Damon had a set-back...Please Pray!
The other night Damon was complaining to Lisa that he was having difficulty breathing and she could hear him wheezing a bit. Already in Houston for his regular treatment, she took him to MD Anderson. The doctors didn't like what they heard and scheduled scans for his check and throat. Still having pain with his back they scheduled an MRI for it as well.
Damon said he was in tremendous pain during the MRI cause it took an hour and his back was hurting the entire time, but he knew it needed to be done.
Today the doctors sat us down to discuss the results. We had his brother Stephen and twin sister Dara with him as well as Nonno, Nonna, Zia Christina and, as always, our hospital Angel Missy from "A Shelter for Cancer Families." The results were not what we wanted to hear.
Without getting into great detail....the tumors grew in his lungs. Yes, we just had scans two weeks ago and had fairly good news then. But in that two weeks they grew. Why...we don't know. Plus, his back is not doing great either.
In short, we ask for your prayers. We know God would not take Damon this far and give him such strength without a purpose. This cancer may be aggressive, but it has NOTHING on the strength and will of Damon, his friends and his family.
God is the great Healer and sometimes maybe he wants to be reminded who he needs to heal. So please remind him. Please pray the cancer shrinks from lungs and his back is healed. Please pray to continue to give him strength, to ease his pain. Please pray for his Mother, his brothers and sister to continue to be there for Damon.
I remided Damon of his Captain America Mantra:
"I CAN DO THIS ALL DAY!" with everyone's help and prayers....we truly believe he can!!!
[Go Fund Me Update--3/10/18]
--Damon had his second set of scans this year and they were good!
Around the beginning of January of this year Damon was on a new inhaled chemo treatment. We all had very high hopes for its success. However, three weeks into it Damon had difficulty breathing. We did scans and saw the tumors in his right lung almost doubled in size. We took him off it immediately.
We began a new chemo treatment shortly thereafter. It is called Sorafanib. He has been taking an adult dose and it's making him quite fatigued all the time. However, the results from the scans showed there is less fluid on the right side of his lung and he sounds much better. The middle tumor looks to be filled with fluid which might be a good sign that his body may absorb the stuff in the middle killing the tumor. His other tumors showed NO growth. Surgery is not an option currently. For now, we will keep to his current treatment.
[Go Fund Me update--30 Jan 18] WIN an iPad mini 4!
A friend generously donated an iPad mini 4 to Damon's Benefit Fund. So beginning now through February 16th at 11:59pm we will give one (1) entry for every $10 donation or Seven (7) entries for every $50. You can do this either through gofundme, paypal (firstname.lastname@example.org), venmo or just holler at us. We will put all entries in a jar and on Feb. 17th we will have Damon draw live on Facebook. (100% of the proceeds will go to Damon's Benefit Fund for bills)
￼Here is some information on the new iPad mini 4:
Now, on to Damon's update -- Damon is officially off of the inhaled gemcitabine trial. We did a chest scan on him because he was having a hard time breathing and found the tumors in his lungs were growing. We just couldn't risk being on the trial and it not do anything and the Dr's agreed. So Damon is on a new chemo pill that has shown to work in Osteosarcoma patients 30% of the time. We know....30% doesn't seem like much, but when you are down to nothing but trials that number might as well be 90%. Damon has been breathing easier, so we continue to pray that it's due to the chemo shrinking the tumors. We will scan again at the end of February; unless something happens and we need to do it sooner.
The chemo is causing a tremndous amount of fatigue on Damon. He sleeps quite a bit. Between the chemo, pain meds, etc....they simply knock him out.
We have another issue we have to contend with and that is his back. It seems the photon radiation had an adverse affect on his vertebrae. It caused it to weaken and collapse. Lisa and Damon see the Dr on Wednesday. Thus far, he told us the best option was a brace. We will not accept that. There are other solutions. We want it to correct it, not accommodate it. So we'll find out what he says.
On to the fun stuff....Many of you know Damon has his own Comic Book called "Understanding Osteosarcoma" from Jumo Health. Recently they made it into an audio comic book, but now Jumo Health has made it go Digital! This is so cool to watch and the whole series of what they do is just incredible for kids! (oh that is not the kid's voices...Damon wanted everyone to know...ha ha)
Watch the comic here: https://youtu.be/Ry-HRbhuJ_c
You can find more just like it by creating a free account on JumoConnect
. It's great because you can establish a condition and they will point you to some great resources.
Recently Texas had a bit of a ice storm. Of course in Texas if there is just a bit of ice the entire State shuts down. This was no exception. It's troubling for adults, but kids always find a way to have fun. Damon's was to take his mom's Simply Fit board and use it to slide down the (A Shelter for Cancer Families) apartment's garage. He dedicated one slide in particular to his buddy Chris Evans (yes, THAT Chris Evans) and it not only went viral, it made the Fort-Worth Star Telegram: http://www.star-telegram.com/latest-news/article195226374.html
Damon also received a very special gift from a Twitter friend in Florida--Shawna. She crocheted a Captain America Shield for him and it is his new favorite blanket.
￼Otherwise, he still does his homebound studies for school and he still tries to get out as often as he can.
The stays in Houston are becoming more and more frequent, so he gets to spend less and less time at home with family & friends. If you have his number send him a text once in a while. He gets lonely so far away from everyone. Mom does her best to make it fun, but it's still away from everyone.
He may have a back surgery coming up and he also may have yet another lung surgery coming so we are bracing for that.
Thank you everyone that sent Damon a card. It really gave him a HUGE smile. Don't forget the iPad Mini 4 drawing and good luck to everyone! God Bless!!!!
[Go Fund Me update--02 Jan 18]
Damon has begun as the first human trial for the inhaled gemcitabine. He even created an ad for the occassion:
￼￼It's so nice to see Damon has a sense of humor about things. He has been experiencing throat pains, chest pains and loss of breath here as of late. We are not sure if it is a cause of the chemo or simply a virus. Possibly the same virus that is going around. This past Friday we did a chest scan and the initial results were a bit alarming. They showed the tumors were larger than the last scan. Now, the enlargement could be a cause of the virus and it simply showing them irritated and inflamed. The other option is they are simply growing. Today we had a CT Scan to be sure. We will know the results tomorow.
Before the holidays Damon got to have a little bit of fun in between all the doctor visits. He once again grabbed the shield and became Captain America for The Children's Donor Christmas gala along with The Batman of San Antonio and the Bat Alliance. Here he is with Ironman:
￼￼Following that he was offered to be a "Fireman for the Day" from the San Antonio Fire Department. He received a plaque, an official helmet, badge and cadet shirt. He said that was the best time he has had in a long time. It was Awesome...to quote Damon.
￼￼Over the New Year's weekend Damon went hunting and had a blast. Maybe too good of a blast because after we did Christmas with The Billecks he had a 102 fever. The Dr. was concerned enough for us to have to make the trek to Houston and go to MD ER. So Damon and I spent NYE at MD Anderson's ER till 11:15pm. Luckily they didn't admit him. They simply gave him a high antibiotic and let us go back to the apartments provided by A Shelter for Cancer Families. We spent NYE on the garage roof while Mom enjoyed her time with everyone else in San Antonio.
We are not sure what the new year will bring. However, we will meet it head on! [We Can Do This All Day!]. We pray the tumors are not growing and that this new treatment will work. If it does not, there are some options...but not many. Sadlyt, there really are very few Osteosarcoma trials out there. It may mean going to St. Jude's. We hope not as that would be a game changer for sure.
2017 was a tough year. Three days after it began we learned the Cancer had returned and the year was set into motion. Certainly not the motion we were hoping to have and we are praying this year does not begin in the same manner. Literally, tomorrow will be Jan. 3rd and we will find out if the tumors are growing or just irritated from his infection. So tomorrow, a year to the day, our New Year will be once again be set into motion by a scan.
Expenses are mounting as we continue to live in two cities and deal with growing medical bills. But, we are maintaining and we thank God for those blessings.
Make no mistake, we would not have survived 2017 without the prayers, the love, the well-wishes and the support from everyone that reads this. Your comments, your calls, your texts, your cards help elevate our spirits and we believe help keep the cancer in check. Thanks especially to Chris Evans (aka Captain America) and his loyal community. You really have made a difference in Damon's life!!!
God Bless you all. May your year be filled with God's love.
[Go Fund Me update--07 Dec 17]
Today Damon embarks on a new Chemo Trial. Damon is to be the first human to receive the inhaled gemcitabine.
The idea behind this trial is simple. Instead of the chemo going through the blood and working it's way to where the tumors are located, in his case his lungs. Why not have the chemo go directly into the lungs. Sounds easy and like a good idea. However, this trial has been in the works for many years and has shown to work in the lab. So, with the help of many doctors, the great people at A Cancer Shelter for Families (helping fund it) and many, many prayers...it's is finally here. FDA approved it and the doctors have eyeballed Damon as their prime test subject. Damon is literally, the first human subject. So how the tumors react with him, will help set the pace for future patients. The chemo has worked with Damon before. So, we are really praying this new trial will bring new hope to all those battling metastatic sarcoma.
Damon will require more visits however. He will receive the treatement 2x a week for 2 months then we will scan. If the scans show good results, he will stay on the treatment another 10 months. So we are looking at another solid year of chemo, traveling to and from Houston, Lisa not working and Damon being homebound. This will not be easy, but we are in it for the long haul.
He recently had lung surgery on his left lung to remove tumors. It was his third lung surgery. He did very well and recovered pretty quick. He does NOT like them though. Can't blame him. They are very painful and the recovery is slow. He was in the hospital about a week. Lisa stays with him and takes care of him. The kids and I made it up for the weekend so she could have a break and spend time with the other kids and I stayed with Damon. While we were in the hospital, The Batman of San Antonio began a campaign to remind Damon just how many people were behind him. He was scared, hurting and missing home. Batman asked people to take a photo with #AmericanBoy / #TeamDamon. It was so uplifting to see how many people did this.
￼￼Through all of this however, Damon remains a ray of light. His smile never stops shining and his heart never stops growing. He recently has taken on the Alter Ego of "Captain America" OFFICIALLY! He wants to be like his HERO Chris Evans. And Chris truly is a hero! He has talked to Damon several times even though he is busy shooting this little thing called Infinity Wars. Damon is now a full-fledged member of The Bat Alliance, lead by The Batman of San Antonio. They are a group of Cos-Players that dawn the costumes to attend events held by many great Non-Profit organizations here in San Antonio. They also visit kids at hospitals, and help support the community as best they can. You should see the smile Damon gets when kids come over and ask to take a picture with him. They help him feel better, just as much as he helps them. As we say..
Strength isn't how much one can lift...
Strength is how much one can lift others!
Damon is doing okay in School. He is homebound and MD Anderson actually has a program at the hospital whereby his teacher at his school can send them assignments and he can work on them there. It really has become a life-saver! We have to say, we LOVE M.D. Anderson and the doctors and nurses there have been remarkable. We are not out of the woods yet. We still have a long road ahead and many expenses with regard to travel, groceries, and yes, hospital bills. But, God is with us and standing by our side!!
￼￼We do have some good news coming. We are working towards forming our own Non-Profit so we can truly help other families that have to go through this. We are calling it HAPPY HEROES
--After Pharrell Williams and his song 'Happy'
--After Chris Evans and the many heroes (brave children) that face this arch-nemesis called Cancer. More on this soon..... :)
[Go Fund Me update--07 Nov 17]
Damon's lung surgery went well. The doctor went in knowing there were about 7 cancerous nodules in his left lung and wound up pulling out 28 (some the size of a grain of sand... but still). Damon's been hurting ever since. One lung surgery is tough on anyone, but this is his third. So he's not enjoying this at all. He should get out of the hospital on Wednesday (11/8). But they will stay in Houston a few additional days to ensure there are no post surgical issues.
The plan now will be to push hard for the Gemcitabine inhalant. This is a trial chemo. Damon has had Gemcitabine before with some success. So the theory of it being an inhalant and having the chemo going directly into the lungs is one we are excited about. They are as well because Damon is their prime canditate.
The issue is the 'trial' is not ready and not approved. So, unless it gets aproved, we still have nothing. There is some hope. There is a possiblity of getting it to be used for Damon under "compassionate care". Dr. Hayes-Jordan encouraged us to make the request anyway. The goal of the inhaled therapy is to clear the lung of all disease. So the push begins! We are now pushing through with lots of papers and forms to get it to be used. Cross your fingers!
If we do get it the plan will be to get Damon on it in the next few weeks and then continue for 2-3 months and then scan again.
Damon has only been to one full day of school this year. It's a sad pitfall of cancer. He is getting his education. He has a phenomal Home-Bound teacher that works with us and helps Damon. Thank you Mrs. Keyes! And Damon also attends school at MD Anderson. Mrs. Keyes sends his work up there and they have teachers at the hoswill pital to help the kids. It's a wonderful program!
Lisa and Damon have almost moved to Houston at this point. Even Damon made note that his google 'Home' placemarker on his phone shows up as Houston now. It certainly makes it hard to maintain two households and gas, and everything else, but a fact of life now. In the last two months they have only been in San Antonio a total of 8 days. The both of them seemed to have traded in Spurs jerseys for Astros.
Recently Damon had a bit of a boost in moral! Chris Evans (a.k.a. Captain America) sent him a private message via Twitter. Won't go into detail because Chris and Damon can have their own conversations. But it was wonderful Chris took the time to message Damon several times to see how he was. I will share this...Damon made sure to tell Chris that in the comics when Captain America gets frustrated with the govt. and Shield and drops the name 'Captain America' he picks up the name 'NOMAD' which is 'DAMON' spelled backwards. Chris laughed and said their meeting was 'Kismet!' To which Damon said "what's that?" ha ha....
￼￼Stephen, Dara and I came to the hospital this weekend to visit Damon and Lisa. It gave Lisa a chance to hang out with the kids and get caught up on sleep. My car decided to go out on the way there. Gee that was fun....NOT!
We want to thank everyone for the support, finacially, prayers, calls, cards, whatever you do. It means EVERYTHING to us and to Damon. Damon loves to get cards so if you want to send him something, just let us know. God Bless!!!
Finally, HUGE thank you goes out to The Batman of San Antonio, The Bat Alliance and everyone for participating in the #AmericanBoy & #TeamDamon campaign. That lifted Damon's spirits so much. It lifted everyone's! It was amazing to see everyone show him support like that. Damon said he didn't feel so lonely! Sure Lisa is by his side, but when you are away from everyone, it's easy to get disconnected. This brought the two of them back home and really showed how much everyone is behind him -- so Thank You!!!
[Go Fund Me update--October 19]
Update on Damon: Lung Surgery again, Prosthetic Arm on its way and Radiation did it's number on him.
Well, it's been Scanxiety week. Scanxiety is what they call the feeling we all get when it's time to do scans to check up on the cancer. Believe us, knowing the scans are coming will certain cause you to have heavy anxiety....hence "Scanxiety."
So, let's start with Damon's throat and weight loss. This week Damon had an endoscopy. This is where they put him under and place a camera in his throat to see what is going on. The problem has been it has been hurting him to eat and to swallow. He's lost over 40 lbs in just over a month.
Now, we know the cause, and that is the combination of Photon Radiation he had mixed with his Chemo. We knew it would irritate his throat, but not to this severity. They found the radiation caused him to have an ulcer inside his throat and for it to swell, thus causing him discomfort when he swallowed. We also discovered his stomach is constantly upset due to the chemo, Ibuprofen, not eating, etc. They opened his throat a little and he's on meds. Time will tell with this one. For now, he's eating a little better, but still not enough.
Last week he was fitted for his prosthetic arm. We've been waiting on this for almost a year now. The issue has been just doing the fitting. When it was ready, Damon was having double lung surgery. Then he had radiation, chemo...etc.... So, we went and they fit the arm to him and measured to be close to the length of his other arm.
Now this arm will only be a 'Passive' arm. Which is to say it won't do much. He can move it into a position, but that's about it. However, when we were faced with this scenario, we weren't going to be satisfied with it doing nothing.
So we told Damon, if you were to have it do something, what would it be? He thought and had an epiphany. We then hunted down a company that would make it. Took some digging but we found one right here in SA. OP Solutions is making his arm designed by him...with a little help from J.D. SmartHomes. The arm with be equipped with BlueTooth speaker so he can play his music on his arm and have lights. Also, it will be designed per Winter Soldier in Captain America. That should be ready in a few weeks.
The Scans...ah yes, the scans. Well, it wasn't good...But...it wasn't bad either. The scans showed No New Tumors. That alone is an instant win! It also showed no new growth. Meaning the tumors he had didn't grow, well, save one that grew to 1 cm.
The scans showed one tumor near his heart (inside his lungs) and one on a pulmonary artery in his right lung. After all the doctors talked it over at MD Anderson, they feel the best course of action will be another lung surgery. They will do a lung surgery on his left lung and remove all tumors including the one near his heart. The other lung they will leave alone. If they did surgery on that lung they would have to remove the lower lobe due to the tumor being near the artery. So, we are looking into another way.
Following the surgery he will participate in yet another Phase 2 trial. This one will be an inhalant Chemo. They are very excited about this drug and Damon is their prime candidate. Please pray for this one to work its wonders!!!!
The surgery will be on Nov. 1st. This means he will be admitted that Monday, Oct. 30th. It goes without saying Damon is NOT thrilled with this outcome. Make no mistake, lung surgeries are painful and not easy. This will be his third and he's not looking forward to it. Who would?! He will be in the hospital for about 2 weeks. Plus he'll be in the hospital on Halloween. We told him he has a built in costume...he can go as a patient. Yeah, it didn't go over too well. worth a shot.
We feel we are doing the right thing. But, with cancer you still don't know. It's hard! You second guess yourself constantly. Are we doing the right thing? Will it work? What if it doesn't?! It's hard! It's scary!!
It's because of all this, that we started Chris Evans' "Shhh" method. This is a good segway into the fact that Chris Evans (a.k.a. Captain America -- a.k.a. Frank Adler if your a "Gifted" fan). Anyway, did a post on Twitter about Damon. Someone said that she was having a bad day and Damon made her feel better. I mentioned the "Shhh" method and then Chris Evans tweeted [That's awesome!! Stay strong Damon!! Don't be fooled by the brain noise!] Yes Damon flipped out...okay maybe Dad did too. It's just closing your eyes and telling your brain to shhhhhhh. It let's you catch up. So thank you Chris and thank you Chris fans!
This is a good time to say thank you to everyone. We do these updates so everyone can know what's up with Damon and yes to help raise funds for us. All the hospital visits, chemo, meds, surgeries, doctor visits all cost money....LOTS of money. Not to mention going to Houston, staying in Houston. (and thank you to ASCF--A Shelter for Cancer Families for giving them a place to stay), gas, etc. Plus Lisa quit her job to take care of Damon, so we have all the house, cars, utilities to deal with as well.
So thank you, and God Bless you for helping us. It is the most HUMBLING position to find yourself in, but through God's blessings, we are making it because of friends, family and fans like you. Anything helps, so thank you, thank you, thank you!!!! :)
Check out Damon Cheating before surgery and getting $20.
[Go Fund Me update--June 10]
We had scans recently and his 6mm tumor in his lungs is now 1 cm and 2 additional tumors have appeared. This, after we removed almost 100 tumors in his lungs through surgery. Damon is staying at M.D. Anderson for now. They have a trial that we felt was worth trying. Downfall is it is a 'Chemo' trial. So, this means sickness again, mouth sores, low numbers, lethargy and possibly hair loss again. We are still very much considering the trial at St. Jude's. However, that will take some time to get set up. In the meantime we could not risk doing nothing and waiting. We know the cancer tumors are growing, so waiting is not an option.
We are hopeful with this trial at MD. He has to get treatment weekly at the hospital and then has a oral-type of chemo and lots of pills. Not the best way to spend your summer, but he makes the most of it. We do as much as we can on his good days.
We are still preparing for St. Jude's and saving up for the expenses. Yes, they help with some and they cover the hospital stuff. But that also means a loss of income to pay all the other fun hospital and house bills.
Damon has been staying positive and keeping his spirits up. He is doing his arts & crafts and enjoying it. He recently painted the plaster casts we made of his left hand before his amputation.
Thank you everyone for the support. God Bless.
gofundme Update 5-10-17 --
Damon's Inaugural Fiesta Medals were a HUGE hit. However, we still have about 20 left. To get one of his medals simply make any donation to gofundme.com/DamonBenefit and we will contact you to get your information and mail one to you.
Damon still has cancer. Last scan showed a few nodules in his lungs again. The last Clinical Trial Damon participated in he shut down because the medication caused him to go into a mild coma. We meet with his team of Doctors at MD Anderson next week and we will see what Clinical Trials are available to us.
Sadly, there are not many! This is why we put so much effort in raising awareness for pediatric cancer...specifically Osteosarcoma! It's very frustrating! But with your prayers, and God's help, we will prevail! We have to believe that!
Tumors to be removed ~ Phase 2 Trial Starts:
Damon will soon begin a Phase 2 trial to beat the osteosarcoma. In order to begin he will have to have the osteo tumors in his lungs removed first. So on Tuesday (1.24.17) he will undergo lung surgery on one lung, recover and in two weeks have lung surgery on the other lung. Several weeks later he will begin the trial.
The trial is geared to identify the osteo cancer cells and then boost his white blood cells so they are supercharged and can destroy them. We are currently dealing with the insurance companies because they generally don't like to pay for 'trials.' But, this is all we are left with. Damon has had all the major chemo's they use to treat Osteo and it's still present. Plus this is all being done in Houston, so we have that added expense and with Lisa not working so she can take care of Damon....makes things interesting.
Thank you and God Bless doesn't seem to really convey how much we deeeply appreciate in and all support whether is be with money, gift cards, supporting notes or even prayers, but it means everything. We just want this to go away and Damon have the chance to be a kid again.
Here are a few blogs recently posted about Damon:
--American Childhood Cancer Organization
Gold Ribbon Hero~Damon Billeck
--Alex & Ani Jewelry
A Story Of Unparalleled Bravery: #CARRYLIGHT
Cancer has returned for the 3rd Time!
On 04 Jan 17, Damon had his first three month scans since he got off Chemo in September. As you may recall on 28 Sept 16 he was declared N.E.D.. Wednesday I traveled to Houston back to M.D. Anderson Cancer Center for his scans. Lisa and Damon were already there for other appointments. To say we were nervous is an understatement. Petrified is more like it.
After hours of scans and MRI's we met with our Doctor, Dr. Huh. The scans were not good. Osteo came back; it showed up in his lungs. He has three new nodules. Ranging in size from 5 mm - 7 mm.
The 'concern' is that one of the nodules is located on the inside lining of his lungs a 'pleural metastasis.' That's dangerous because if it breaks through the lining, it could get into the pleural fluid that surrounds your lungs and that's very bad! So, Damon will be a guinnea pig of sorts. They are basically out of tools. We have used all the chemo we have to kill osteosarcoma and it hasn't worked. So we are going to have to do trials. But they have worked on other kids.
Many "trials" are NOT covered by Insurance...hence the reappearance of the Go Fund Me.
Dr. Huh will work with his team, which now includes Dr. Gorlick from Sloan-Kettering. Apparently Dr. Gorlick just arrived at MD. This is significant because Dr. Gorlick was given the Nobility in Science Award at the SFA gala in NY 2015. We met him and he even spoke to Damon for almost 20 minutes. When I told Dr. Huh that Damon met him and knows him, he looked puzzled. All I could say was "The Kid gets around."
When the Doctor told us, he looked at Damon and asked him what he thought. Damon said two things. First he said I will have to get him a name tag that says "BUGSY." That is the name of the guinnea pig in "Beadtime Stories" with Adam Sandler. He knows that is what he is going to be....of sorts. Then later the Doctor asked him if he was ready for it and Damon said "I CAN DO THIS ALL DAY!" That is a quote from the Captain America movies.
I tweeted that. Then a shock hit me when my twitter started going off the hook. I checked and saw that Captain America himself--Chris Evans retweeted my tweet and added to it. Made my day. I've been tagging him for years. Finally got a response! Damon flipped out when he heard Captain America is now in his corner.
No, this is not good news....but we have a great team of doctors, a great attitude and lots of people praying.
Damon is a tough kid, tougher than many, and he will be okay. This hit hard just because we were ready to get back to normal and Damon was so looking forward to being a student again going back full time. We are nervous, well at least Lisa and I are, but we just have a tough competitor. Brandon, Stephen and Dara took it well, but then have always been amazing in showing Damon support. I told Damon it's like boxing, sometimes the fight is over in 1 round, sometimes it goes 15 before you win. It just depends on the competitor. Osteo is a much tough competitor than we were ready for, but we have too many in his corner and he's too tough to give up.
It's December 2016 and we are finally nearing a new chapter for Damon. He has beat Cancer...TWICE...lost an arm doing it, but he's still winning! He was NED (no evidence of disease) Sept. 28, 2016. So he cleared that hurdle and now he is finally ready to get an arm...as it were.
We have looked and he will be getting just a regular "passive" arm. This will give him the chance to get used to having it, wearing it and then when he is comfortable with it, we can upgrade to something more. Insurance covers some, but not all. (They never do!). Oh the joys we have had with insurance! UGH! Plus, we still have 3 years of medical bills.
We only post because some friends have asked us to post so they can share with others who would like to help.
Anyway, we are excited about this new chapter and we have a huge smile on our face because Damon is excited!
We are eternally grateful for your love, your support and your prayers. God Bless.
Back Story on Damon
Damon was diagnosed with Osteosarcoma at age 9, Jan. 31, 2014. He instantly became a viral sensation when Pharrell Williams sent him a very inspirational video: [https://youtu.be/KtX54oQlLyk
] In the video Pharrell said Damon would do wondrous things and inspire many. Damon took that to heart. Damon has never been mad, sad or anything about his cancer. He had a limb-salvage surgery April 2014. His entire humerus was dead and he had a massive tumor. They managed to save his arm. He then endured another 10 months of very hard chemo. Jan. 2015 he was declared Cancer Free. Damon continued to inspire many. He became the spokeskid for the WNBA Silver Stars cancer program, San Antonio Rampage, he was part of the advertising campaign for University Hospital
, he was even featured on Entertainment Tonight
November of 2015 the osteosarcoma returned in his arm. At this point the only way to save his life was to amputate his left arm. It is a high amputation (cut into his clavicle). Do you know he told the doctors not to feel bad? He didn't want them to hurt or feel bad for having to cut off his arm. He said he understood and was okay with it. Yes....he's only 12!!!
He was in the news in May when he finally met Retired LTC Touchet. Damon had inspired LTC Touchet for 2 years and the two talked back and forth. When they met it was very emotional for the two of them: See the Video
Recently Damon wanted to help the other cancer kids at University Hospital. He wanted a bell for them to be able to ring when they were done with their chemo treatments and declared Cancer Free. He admires Firefighters, so he thought a FireTruck Bell would be the best. Through his efforts, not only did the San Antonio Fire Chief help get Damon a bell, the two of them found a way to not only have this bell be a Beacon of Hope to kids with cancer, but a way to honor those firefighters who passed away with occupational cancer. On 25 Aug 2016 Damon, the San Antonio Fire Chief and the Mayor of San Antonio, Mayor Ivy Taylor, presented the bell to the hospital: VIDEO
His inspirational story reach Texas lawmakers and they invited Damon to the state capital to be Governor of the great state of Texas for a day. They said he could declare one proclamation (anything he wanted), so he made Oct 7, 2016 Pediatric Cancer Awareness Day. Here is the VIDEO
November 2016 Damon was a featured Kidd's Kid from the Kid Kraddick morning show. Watch the Story!
He was also featured in the Alex & Ani #CarryLight program. Read the story.
As you can see Damon is VERY active and VERY much a proponant of promoting Pediatric Cancer Awareness. He wants to help others so no one has to go thru what he has and will continue to for the rest of his life.
Damon truly is an inspiration to others and our HERO!!
original message: CLICK HERE
Pharrell Williams Holds Back Tears After Getting Sweet Message From Young Fan With Cancer--Feb 2015
Nearly one year ago, Pharrell Williams sent an inspirational message to a 10-year-old boy named Damon, who was fighting cancer. Backstage at The Voice, ET shared a touching message from Damon to Pharrell. -- CLICK HERE
DAMON's Original Story:
IT ALL STARTED WITH A HUG!!
Lisa lovingly gave Damon a hug at HEB January 31, 2014 while in line to check-out. When she did she felt something hard on his left arm. Curious, she took him to the TX Med Clinic. From there they were sent to NE Pediatric. Fast forward several hours and the Doctor informed his parents the worst possible scenarios -- Damon had Bone Cancer.
The next day Damon (age 10) was diagnosed with a rare and aggressive form of Osteosarcoma Bone Cancer. He was told early on he would have to have his left arm amputated in order to save his life. However, instead of letting it get him down he adopted 'Happy' as his theme song. Pharrell heard about Damon's story and love for his song through radio friends.
was so touched by Damon's story of faith, love and happiness that an autograph wasn't going to do, he sent Damon a personal message of hope, a message of love and a message to be 'Happy.' Here is the video: http://youtu.be/KtX54oQlLyk
Media got wind of it and it went everywhere. It first aired here on KENS 5 in San Antonio. The news director was so touched they released it to all 40 affiliates with Gannet as well as USA Today
where it was picked up. From there it is too many TV stations, Radio station, Newspapers and web news sites to mention.
Here are few of the stories:
Kidd Kraddick (around 6:10): http://www.kiddnation.com/pharrell-william-joins-us/
Huffington Post: http://live.huffingtonpost.com/r/archive/segment/5317a9ea78c90a1a5500099b
Since then we had found another Doctor and through the grace of God, he was able to remove the tumor and ultimately save Damon's arm. Going into surgery Damon remained 'Happy' in fact the head nurse on her first update said in her entire nursing career has she ever seen a little boy come into the OR with a smile and kidding with the doctors, especially one that didn't know if he would wake with his arm or not. (it was still very iffy if his arm could be saved.) That just goes to show you the impact Pharrell had on Damon. He even wore a hat that said 'Happy' that day.
Damon took what Pharrell said to him to heart. Pharrell said Damon would inspire many and Damon wanted to live up to what Pharrell said. Since the video, Damon goes into other kid’s rooms that suffer from cancer and speaks to them, makes them smile and gets them to play when they were sad. He has even spoken at various Cancer events to share his story.
The WNBA team San Antonio Silver Stars
got wind of Damon and even made him their spokesman for their “Assist Against Kids Cancer Program.” Here is their promotional video: http://tinyurl.com/kl4cjty
Damon continues the program to the San Antonio Rampage
and is their spokeskid for their "Face Off Against Kid's Cancer." http://sarampage.com/faceoff/
San Antonio even wanted to do a story on him again: http://youtu.be/Aw0URwQGIh0?list=UUKinpLjouDoNe6oBRK9QFyw
In honor of Childhood Cancer Awareness Month Damon came up with the idea to challenge people to dance silly to Pharrell’s ‘HAPPY’ and to challenge others so people know kids with cancer can still be Happy. His motto is: Never be Scared – Never be Afraid -- Stay Happy and you’ll get through it”
DAMON'S 'HAPPY' CHALLENGE:
Damon is a fighter and the happiest kid we've ever seen.
He is our hero!