Good News resulting from Tony's treatments

The linked article indicates that one and maybe four people have been cured of advanced brain cancer by the same experimental virus treatment that Tony underwent. Tony was in the trial very early on when the dosage was still low, but the plan was to crank up the dosage a little with each patient until it either worked, or had unbearable side effects. Apparently it is working. 

     http://abclocal.go.com/ktrk/story?section=news/health&id=9054393

It is bittersweet since it is too late for Tony, but it helps to know that he may have helped find a cure for others. Here is an excerpt of the article.
---------------------------------------------

HOUSTON (KTRK) -- A Houston husband and wife have come up with a way to kill brain cancer with a single shot of a cold virus, and much of the early research was funded by Houstonians, too.

Related Content

STORY: Fight brain cancer; Run for the Rose

MORE: Unique Urban Rocks website

MORE: Medical story search

MORE: Free ABC13 iPhone, iPad, Android and Blackberry apps

"First of all I said, 'God is good! Praise the Lord!'" Dixie Fralic said.
Fralic had advanced brain cancer. Now she doesn't.
"Dr. Lang had a smile on his face and he said, 'I'd say you're cured!'" Fralic said.
The treatment is actually a cold virus, which isn't lethal to normal cells, but it is lethal to cancer cells. The souped-up cold virus called Delta 24 was developed by a husband-wife research team at M.D. Anderson.
"I think this is a dream of researchers, that something you do on the bench moves to the patients and it has an effect. It's the best thing you can have," Delta 24 researcher Dr. Candelaria Gomez-Manzano said.
"We never dreamed about that," Delta 24 researcher Dr. Juan Fueyo said.
Dr. Fueyo and Dr. Gomez-Manzano worked on what they call their big idea for 14 years. At first, everybody was skeptical.
"We decided to design a treatment that was completely out of the box," Dr. Fueyo said.
Nobody had tried injecting a live virus directly into the brain. To make it safer, they changed the cold virus so it only kills cancer cells.
"Now we think anytime the tumor starts growing again, her immune system comes in and fights the tumor," neurosurgeon Dr. Frederick Lang said.
And they did this with a single shot of a cold virus. And Fralic isn't the only one.
"The response she had is dramatic and not seen typically. And so what's interesting is we have three other people who have done similarly with this kind of treatment," Dr. Lang said.
"It's just incredibly amazing," Fralic's husband, Rusty Fralic, said.
So as the Houston scientists plan bigger studies with their cancer-killing cold virus, Fralic and her husband are planning their future.
A large international study is expected to begin next year. Seed money came from Houstonians a decade ago through funds raised by the Run For The Rose, which takes place April 14 at Reliant Park.
Find Christi on Facebook at ABC13-Christi Myers or on Twitter at@ChristiMyers13

Final Posting

Hi everybody. It is kind of hard to end this blog. It has been a part of my daily life for a long time now. It has helped preserve my family's sanity by keeping people updated from one spot, and it has been somewhat therapeutic to put things in writing that I sometimes could not say in person or on the phone.

I do have a request of you. To help make Tony's death have the most meaning possible, take the following steps that we learned from his life.

• Put God first.
• Give of yourself and your time to others.
• Seek out and enjoy good music and good friends.
• Remember that your simple everyday actions reach much farther than you know.
• Smile.

Finally, so we can all see Tony again...make sure you are saved. Read the Bible, and study it for yourself. Challenge "what you have always heard" or "what you have been told", and make sure it really is in the Bible.

Thank you for being such good friends to Tony, to Randi, to Sherri, and to me.

God's blessings on all of you,

Neal Collins

Thank you everyone

Thanks to those who attended the memorial/celebration services for Tony, and to those that provided memories to be shared. It is good to know that so many cared about him. Some of the memories were serious, some sweet, some funny, and some raised my curiosity...Mitch, we need some details on this 'racing' story : )

Thanks to the Mount Comfort and Anchorage congregations for supporting the two services. Thanks to Jack and to Mike for conducting the services. Thank you to all our Arkansas and Alaska friends who made this possible.

I expect to make one more final post to wrap this up. I haven't figured out what to say yet, but it just doesn't seem complete yet. Thanks for following it.

Information for Memorial

We just wanted to let everyone attending tomorrows memorial in Arkansas know that Mount Comfort Church of Christ is a little hard to find. Once you get off of 540 at the Porter Road exit, you will turn west and follow that road until you see the church building on your left. It is a ways down the road, but keep looking behind the houses on your left and you will see it through the trees.

There is a lot of construction going on on the road currently, but just follow your way through it and you will see the church on your left. For all of you with a GPS or looking on Google Maps, the address is:
3249 West Mount Comfort Road
Fayetteville, AR

Donations in lieu of flowers

In lieu of flowers, donations can be made to either of the following.

Arctic Wind Flute Choir
7761 Lavs Circle
Anchorage, AK 99518

Mount Comfort Church of Christ
Campus Ministry
3249 W Mount Comfort Rd
Fayetteville, AR 72704

He traveled with the flute choir to both New Zealand and Scotland, and planned to travel on their next trip as well. The Campus Ministry is better known as Razorbacks For Christ (RFC) and he was very involved with them at college.

Memorial Gatherings

Simultaneous memorial gatherings will be held for Tony this Saturday, August the 14th. One will be at the Mount Comfort Church of Christ in Fayetteville, Arkansas at 6:00 PM Central Time, and one will be held at the Anchorage Church of Christ in Anchorage, Alaska at 3:00 PM Alaska Time. Dress is casual. It will be a time to sing songs, and to revisit happy memories of Tony.

We need your help with this. Please email your happy memories of Tony to his Mom. These will be compiled and used in the memorial at both locations. Please send these emails as soon as possible, but not later than Wednesday night so there is time to review and work with them.

People are invited to join either gathering. Tony's physical family will be at the gathering in Arkansas where all his extended family can more easily attend. We debated about having two separate gatherings (one for Alaska and one for Arkansas), but we didn't feel we could go through this twice.

Please email your happy, and even funny, memories to his Mom so they can be shared with all.

Thank you...

Thank you for all your comments here and on Facebook. We knew Tony had matured and blossomed at school, but reading everyone's comments tells us how much.

I don't know if this will help you in your grieving process or not, but I want to share something with you.

His Mom and I are doing fine with his death. Watching his abilities run downhill, knowing the almost certain end result of this kind of tumor, staying optimistic to help him stay optimistic, and watching him suffer the last few days was the hardest thing we have ever done.

He made it much easier for us when he let us know, on Tuesday, that he knew he was probably going to die, and that he was okay with it. Then we were free to talk to him about where he was going, to tell him that we were okay with it -- don't worry about us -- we are here to take care of you, etc.

In short, I ask you not to worry about us...we are probably feeling much much better than you are at this point. Think about all the good memories you have of Tony. Look up pictures of him on Facebook...I think you will find some of them even make you laugh.

It is over...

Tony died about 3:45 PM today. We are sad he is gone, but glad his struggle and suffering are over. He appears to have gone peacefully. His sister is with her best friends in Arkansas.

We don't have any plans yet for any kind of visitation, service, etc.

Thank you for your prayers.

The only change from yesterday is that his breathing is now shallow and rapid with short periods of no breathing. He moves his left arm and leg some like he is moving in his sleep.

His Mom and I take turns sitting with him to keep him company and watch for any needs. We can still get pain medicines in him via patch or absorbed in the mouth, but his other medicines require swallowing of a liquid or pill, and he isn't capable of doing that.

He has taken nothing to eat or drink today, and has lain on his back all day. We believe he still knows what is going on about him, but he has not responded verbally.

He is pretty out of it today. He did eat a little breakfast which he hasn't lately. We have liquid medications now since he was having trouble with pills sometimes. He says he hurts so we have given him some extra pain medication.

We had another brief lucid conversation with him just now. He told us "nothing is going to take it away", "that's the way it is", and he indicated that he is ready to go. His words were not tinged with fear or resentment or anger...they were just a statement of fact and acceptance. He seemed worried about us (his Mom and I), but we told him not to be; and that we would be okay and follow him later. It is an enormous huge gigantic relief to know what he is thinking, and that he is okay with the way things are going. I hope he is comforted knowing we are ready too.

Earlier today, he said he was thinking about all his friends, but we couldn't understand much of what he said then. It is hard for me knowing that he knows what is going on, has something meaningful to say, but can't say it most of the time.

Thank you for your prayers. Please pray that Tony's peace will continue. Please pray for him to be healed and have his abilities restored. Please pray that God will provide us at least one more such lucid comforting moment for he and his sister to share before she leaves for school. She leaves Wednesday evening.

He just finished listening to the Truth in Love TV program, and fell sound asleep during it. We record it and play it for him as part of a home Sunday service. He felt so bad yesterday that he didn't want a service. Today, he asked if it was Sunday, and replied 'bummer' when he found out it was yesterday, so we played the show and planned a short devotional after...but he is absolutely sound asleep now.

He had a very rough night. He woke up a couple of times complaining of severe pain, but it went away after he used the commode. Pills are very hard to administer, so we are going to get liquid versions of as many of his medicines as we can.

It looks like his platelet count has not come up. He is getting new bruises too easily, and old bruises are growing instead of healing.

We think he finally understands that he won't be getting any more treatments. He asked when we were going to have his next blood test to see if he could have chemo. We told him that the doctors don't have any more treatments for him, that all we can do is pray for God to heal him, but that if he does get better, we can do some treatments. He lapsed back to sleep right after that...we only get a few seconds once or twice a day where we believe he understands us and we understand him, then he falls asleep.

On a related note, please pray for and support his sister. She will be going back to Arkansas this Wednesday to start work and to get ready for her sophomore year, and will likely be saying goodbye to her big brother for the last time. She fully comprehends what is going on. She will be traveling with her best friend to keep her company. They plan to see the sights around Fayetteville for a few days before her friend returns to Alaska.

Thanks for reading this blog, and thank you for your comments.

He is sleeping soundly again. For a little bit today, he talked about enjoying the Arkansas band trip to Florida.

He said that his head doesn't hurt today. The pain patch can take 24 to 48 hours to take effect, and it has been that long now. He still says very little, sleeps or rests all day, and eats almost nothing. He likes to drink instant breakfasts, orange juice, lemonade, and other flavored drinks. His eyes don't always close all the way during sleep, I think they used to.

This morning, during a lucid moment, he said he hopes he gets to go back to Arkansas. In perhaps a dreaming moment, he said he was practicing flute and needed an aide to help work with his students.

He doesn't always get up to use the commode now because the effort exhausts him. He has found that in-bed methods are much less taxing. We like it too because we get more interaction with him before he drifts back to sleep.

He has slept or rested with his eyes closed virtually all day. He says his head hurts in spite of taking his Vicodin and having a pain patch on. He has taken a few bites of food, but doesn't have much interest in it. He hasn't said much, and even getting a yes/no answer can be a challenge at times. He still gets up to use the bed-side commode, but it is a little harder to do. He does not feel good at all.

Wouldn't you know it. Just as I posted the last entry, he woke up and was incomprehensible again. But we figured out he needed to use the commode, and he is sound asleep again.

Today, he is pretty zonked out. He isn't really responding much, but we have a pretty good grasp of what he says when he says it. So I'd say his communication has improved a bit over yesterday.

We had a really nice visit with him for about half an hour in the wee hours this morning. He woke us up, and (in a very sleepy almost sleep-talking way) talked about wanting to return to college and how much he enjoyed the marching band trips to away games.

He is now using some patches to keep any pain in control. He is eating less than he was, and he is starting to have some trouble swallowing his pills. He fell out of bed earlier today, but some friends have loaned us an electric bed with rails that we can use to raise his head and feet without having to use lots of pillows...it is nice. When he fell, he scraped his right hand, and it hurt. This seems odd since that is the arm he can't feel, but apparently he can still feel some pain in it.

With each apparent setback, he seems to accept it pretty much in stride. When we have asked how he feels about the changes, he has said "it's what I've got" with an air of matter-of-fact acceptance.

He isn't on the computer anymore. He had collected quite a few characters, but since he accidentally saved over his Pokemon game, he hasn't been interested in starting over.

Thank you for reading this, and thank you for your prayers.

Tony is not doing well. The rate of decline is accelerating at an alarming rate. Just adjusting into a sitting position in bed wears him out requiring one or two rest periods during the process. This kind of in-bed adjustment was not a big deal yesterday. We have an adjustable hospital bed to put in his room, but he has refused it so far because he wants to keep his bed.

His mental function is at the point that we are not sure whether or not he knows what is going on about him. We understand very little of what he says. He talks a lot, but his words are either unrecognizable or used inappropriately. He falls asleep all the time now, and is not eating much.

We talked to the doctor today, and he does not recommend bothering Tony with any more blood tests. The doctor does not believe any chemo will help the tumor at this point, and he doesn't believe Tony's body can take another round of chemo. The focus from here on will be keeping him comfortable.