Still on J-5

A few more tests and a few more drugs. At this point the consensus seems to be that we are dealing with chemo side effects. There is no indication of new cancer. In the morning scans will be run of Tyler's gall bladder. Some of the symptoms indicate a possible problem there.



The jaw pain and severe headaches are being blamed on Vincristine, one of the chemo drugs. The diaphragm pain is thought to be a result of the muscles used with all the nausea that Tyler is currently having. The abdominal pain is the primary focus of the testing. It is a different type of pain than Tyler has experienced in past rounds. Tyler has been put on isolation until the problem (or problems) is identified.



Travis is also sick, so we will need to go through and disinfect the entire house before Tyler will be allowed to come home. I think Travis is the only senior in Dublin who was really sick on senior skip day. He even had to miss the senior banquet. He and his girl friend won the "Cutest Couple" award.



Team in Training Update

I am still on schedule with the training runs. I also received all the cross training info today.

One of the training coaches told me today that the training and marathon are 10% physical and 90% mental. I said that was great news! I said I'm not that physical, but many people have told me I am mental. It sounds like this is right up my alley. 23 training miles down, only 450 miles remaining to get to the starting line.



The coach asked if I was feeling better now that I am running. I said "Nope. Every bone in my body hurts all the time, but thanks for asking."


"Pain is your body telling you that you are still alive."



Actually this training feels good. Not physically, but in the heart. As I run I think of all those 100's of hours sitting on J-5, doing nothing and feeling so helpless. I think for all the other families doing and feeling the same. The run is something that I can actively do, while raising money for Leukemia and Lymphoma research. The training and the race are about endurance, perseverance, and surviving through something that you did not believe was possible. But it is nothing compared to what those kids are going through every day. I know it sounds really corny, but it just feels like the right thing to do.

We all appreciate your support.
http://pages.teamintraining.org/coh/columbus08/kalfriend

Back on J-5

Lately Tyler has spent a lot of time in the cancer clinic and in the day hospital for chemo. But it has been a few weeks since he was admitted back to J-5. Tonight Tyler is back, sleeping on J-5. He is having a lot of abdominal pain, as well as jaw, ear, and head pain. I just got home from the hospital. Kathy is taking the night shift. Sitting in the dark, listening to the pulse of the IV, it felt like we had never left.

A bunch of tests have been run, but so far nothing has been identified. The best news is that the preliminary tests show no indication of a relapse of the cancer. That was the primary concern. Still, they have not yet found the problem. The first thought was that his pancreas was shutting down, a known side effect of the chemo he just received. But that also has now been ruled out at this point. In several of the earlier rounds Tyler became very ill and the cause was never found. The assumption was some type of viral infection, although it could never be confirmed or identified. This may be the same thing.

Hopefully we will know more in the morning.

Colyn McDaniel is also back on J-5. He and his dad stopped in to say hello. Colyn has surgery tomorrow. It looks like almost all the rooms on J-5 are full tonight., and there are a lot of new names on the doors. That's not a good thing. Behind every name card is a story of courage. Please keep Tyler, Colyn, and all the others on J-5 in your prayers.

Up and Down

Cancer does not give up easy. It fights back hard. "Good" days are followed by "bad" days. We have learned to celebrate those good days. And most exciting---the good days have been happening more often. So enjoy the good days, and fight back on the other days. One day at a time is the only way to approach this disease.

Tyler is hurting right now, but he had several "good" days last week. He has been in a lot of pain since late Saturday evening, and now is back at Children's. We are trying to find the source of the pain. At this point we do not know if it is cancer related, chemo related, or some unknown third scenario.

Kylee had her "No More Chemo" celebration party this week-end. Now there is something worth celebrating! It was a wonderful time. Congratulations Kylee. Tyler really wanted to go, but was not feeling strong enough. We look forward to the day, not to long from now, when Kylee will be congratulating Tyler on the end of chemo.

Our very first post on this blog, 6 months ago, read:

"Tyler's first concern was that he was ruining Thanksgiving for his brothers. The truth is that we will now have a new date for Thanksgiving Day. I do not know what date that is, but it is the day that Tyler comes home healthy and cancer free. That will be the greatest Thanksgiving Day our family has ever had."

Every day, every treatment, we are one step closer. Celebrate the good days. Celebrate the success.

"I have the strength for everything through him who empowers me."
Philippians 4:13

"In a race there is only one winner. When I run a race, I do so to win."
1 Corinthians 9:24

"When you get to the end of your rope, tie a knot and hang on."
Teddy Roosevelt

Another Good Day

Tyler continues to get stronger. he was feeling good enough to have some friends over to spend the night. He will probably pay for it tomorrow, but I don't think it hurts to push every once and a while.

Marathon training is going good. I did skip today's training run because I had committed to run "Race for the Cure". The training run was 4 miles, and Race of the Cure is only 3.1. So right before the finish line I made a U turn and ran back a 1/2 mile, then back to the finish to get my full 4 miles in. Everyone looked at me like I was an idiot. Some lady at the finish line keep yelling at me, "Your going the wrong way!" I guess she thought I had a few Mermosa's before the race.

During the race I paced myself against a blind guy running with his wife guiding him. I was passed by a guy with one leg. There are a lot of amazing people out there. A lot a people with incredible courage and fight. Tyler, Stef, Sinjin, and Kylee are just a few of the many people fighting their battle with courage every waking moment. I am in awe of their strength and determination.

Fight to Win

Refuse to Lose

http://pages.teamintraining.org/coh/columbus08/kalfriend

Teen Cancer - "The Teen Gap"

Tyler is done with his clinic visits for round 7 chemo. The rest of round 7 is done here at home. Tyler's strength continues to improve. And he is continuing to catch up on his school work.

Tyler's walking is getting better. He may start some more physical therapy soon. As we work closer toward remission, we are focusing on some of the side effects of all the drugs that have been pumped into his body. One of those drugs, Vincristine, causes nerve and muscle damage, primarily in the feet and ankles. It is called "Vincristine-Related Peripheral Neurotoxicity". That obviously causes some difficulty in the coordination of walking.

There is a drug currently available in clinical trials, Glutamic Acid, that has shown to significantly improve this condition. Unfortunately I just recently discovered the on-going trials, and the drug needs to be given at the same time as Vincristine. Since Glutamic Acid is not part of the "standard protocol", we were never given the opportunity to consider it's use.

Earlier this week The Columbus Dispatch had an article about a new effort to create a national bank of tissue samples specifically focusing on teen cancers. This is a result of a 5 year study conducted at Children's Hospital of Philadelphia that concluded that the adherence to protocols is a leading cause of the poor survival rate among teen cancer patients. It was the first study of its kind, trying to understand the poor survival rate among teenagers and young adults. The report highlighted "gaps in knowledge", and concluded that "adolescent and young-adult cancers are not well understood and are sorely understudied."

Unlike the improvements in childhood and adult cancers, teenage and young adult cancers have seen essentially no improvements in 25 years. Candlelighters, one of the nations largest childhood cancer advocacy groups, refers to this as "The Teen Gap". Dr. Michael Caligiuri, CEO of the James Cancer Hospital, stated "We only make progress through research, and research for the last five years has been woefully underfunded, I would even say neglected." Charlene Liggins of the National Cancer Institutes Office of Science Planning and Assessment said her office is "working to improve knowledge about young people with cancer, but there are far fewer experts in that area than in pediatric cancer and cancer in older adults."

Unfortunately, oncology groups at many pediatric hospitals are increasingly taking an unbending approach toward protocol treatments. This "one-size-fits-all' approach is not medically based. It is cost-management based. It allows the hospitals to increase the patient-doctor ratio to the point that individualized care is almost impossible.

The protocols can be very effective at treating patients who match the statistical model of the protocol. However there is not a single teenage or young adult protocol in existence. Further, most teenagers get rare cancers that do not have their own protocol. The result is that the teenagers do not match the statistical model the protocol is treating. The doctors simply do not have the time for individualized care. There is also pressure from the hospital administrators, legal departments, and the insurance companies to remain strictly within the walls of the controlled and cost effective protocols.

This is why I am running the marathon. The Team in Training program has raised $850 million dollars for cancer research over the past 20 years. This research is needed. If you agree, there are a couple of things you can do.

1. Sponsor me with a dollar or two for my race. I just got the sit up, so you could be the first. http://pages.teamintraining.org/coh/columbus08/kalfriend

2. Sign the petition http://www.thepetitionsite.com/1/CureChildhoodCancer.

Team in Training Columbus Marathon

I have now officially begun my official 5 month training program to raise money for cancer research through the Leukemia Lymphoma Society. to give to the cause, please go to http://pages.teamintraining.org/coh/columbus08/kalfriend

Okay. Stop laughing. I got enough of that from Tyler and the other boys. It's funny, but not that funny. I did at least get Erik to say he was proud of me (yes, I was sitting on him at the time, but I still think he was sincere).

I went to the running store to buy some real running shoes. The guy said they had every possible type of running shoe I could ask for, so I asked for the kind the kids wear with the little wheels in the bottom. They did not have those. I was really let down. I told him they should put up a disclaimer about that. The Team in Training coaches had already shot down my roller blade idea.

Actually I talked to the training coach a couple of months ago. He said to get to 25 miles per week and a 5k time under 35 minutes. I did that, so now he claims his 5 month program will get me across the marathon finish line (preferably alive). So here we go.

I thought it would help my motivation to add up all the training miles for the next 5 months, and check them off as I complete them. So I added them up and, after yesterdays training run, there are only 467 miles remaining. Wow. Adding up those miles was a really stupid idea.

Then I decided to I needed a good motivational movie, something like "Chariots of Fire". So Travis offered to take me to see "Run, Fat Boy, Run". Thanks.

Okay. Here's the deal. All the money goes to the Leukemia Lymphoma Society for research. I do this little run (which truly is a walk in the park compared to what Tyler has gone through), and you give a couple dollars to the cause. Here is the site that explains it. Thank you for you support for this cause.
http://pages.teamintraining.org/coh/columbus08/kalfriend

A Good Day in Clinic

Tyler did a lot better yesterday than on Monday. The chemo went a lot faster, and Tyler was feeling good. And get this: He finished a day in the cancer clinic, then he gets home and calls his friends. All went out to CiCi's Pizza, and then went to the Jerome Lacrosse game. He is an amazing young man.

Six months ago I was sitting in the Nuclear Medicine waiting area while Tyler was having more tests run. He had to be wheeled down in his actual hospital bed, because it was too painful to lift him onto the transport bed. Tyler could barely lift his head. It was horrible watching the pain as he was then lifted on to the PET scan table to lay there for a 3-4 hour procedure. As I was in the waiting room I met the family of a 16 year old boy name Taylor (I have developed a habit of starting conversations with every bald kid I see). Taylor came walking in, bald head, big smile, and standing up straight. He walked back to get his chemo treatments, joking and smiling with the nurses. Every day since than I have seen that image in my mind, and prayed for the day that would be Tyler. Yesterday afternoon I saw the first signs of that day arriving.

Tyler still has a lot in front of him. This morning is a tough morning. He probably pushed a little too hard yesterday, and will be doing a lot of recuperating. But the momentum all belongs to Tyler. Signs of "normal life" are starting to appear. Cancer is a beast that does not die easy. But cancer is losing. Tyler is winning. Tyler will completely kill this cancer. He beat all the tumors in in abdomen, chest, and neck. He beat it in his bone marrow. And now he's winning the battle in his blood. Tyler should be finished with chemo in about a month. What a great day that will be! There are still hurdles beyond that, but those will be won as well. We will never be able to thank you all enough for all the support and prayers.

"Fight to Win" - Tyler Alfriend
"You get what your give" - AJ Piniewski
"Change impossible to I'm possible" - Sinjin
"Refuse to Lose" - Stef Tarapchak

Sinjin completed his bone marrow transplant, and is now recuperating from that procedure.
Kylee is continuing to improve, and is having a party this week-end.
Stef is doing great, and will be coming to Kylee's party. I look forward to seeing him.
We have almost 2,500 signatures on AJ's petition.

A Very Long Day in Clinic

Tyler was up early this morning to get to the cancer clinic to begin round 7 of Chemo. It took until 8:00 this evening to complete all the chemo. Tyler got home about 9:30. He came home amazingly strong and feeling good. Everything starts back up again tomorrow morning.

***********************************************

The Conquer Childhood Cancer Act has been approved by the House. The bill authorizes $30 million toward childhood cancer research. As soon as the bill was passed, it was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. Caroline, the daughter of Representative Deborah Pryce, lost her battle with cancer at the age of 9. AJ's dad sent me a copy of the article for The Dispatch:
http://blog.dispatch.com/dailybriefing/2008/05/pryce_bill_renamed_for_daughte.shtml

*********************************************

Tuesday is Livestrong Day, and Lance Armstrong will be on campus at OSU to help bring more attention to the need for cancer research. The Livestong Foundation was one of the first national cancer support groups to aggressively promote the need for separate research on teenage and young adult cancers. To help support the cause he created Youth Alliance, to focus specifically on the often ignored needs of teen cancer.

The thing that impresses me the most about the Livestrong organization is that it approaches the battle against cancer the same way Armstrong approached the Tour de France races...ignore what everybody says, and get the job done. Their goal is to beat cancer this year. Fight this thing to win. If you don't succeed, than try again. Dig deeper. Fight harder. Never quit, ever. And you will win.

If ending cancer was easy it would have already been done. But it is not easy, so it has been left to us. I believe now is the time. Now is the season. It is time to give the focus and dedication necessary to kill this disease. It effects far too many children. And they suffer far too much. Help bring attention to the cause by signing the petition at the top of the page.

"Fight to Win" - Tyler Alfriend

"You get what your give" - AJ Piniewski

"Change impossible to I'm possible" - Sinjin

"Refuse to Lose" - Stef Tarapchak

"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight. If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”"

-Lance Armstrong

Round 7 & John McConaughey

Tyler started round 7 of chemotherapy early this morning. It will take until 4:00 or 5:00 this afternoon. He should be able to come home after that, and then head back to start again in the morning. This round is a new chemo mixture, so we do not know how the side effects will go. Then round 8 will repeat round 6. We are still attacking all those sub-detectable cancer cells. Tyler is going into this very strong and in a good frame of mind. Although the delays have been frustrating, the extra time to recuperate has been good. Their trip to grandma's house was very good.

*********************************************************

When Tyler was only 4 months old we moved to Dublin, Ohio from Virginia. Since we were not sure where we wanted to live, we moved into the Dublin Village condos with our 3 sons (Erik was not yet born). The same day, in the same building, moving from California with their 3 young sons, was John and Barb McConaughey. That day they became our first friends. Our friendship has lasted 16 years, even after we bought homes and moved further apart. John is the calmest and most unshakable person I know. Always calm and with a smile. We have had a lot of great times sitting in his sun room over a beer or watching the Coffman 4th of July fireworks from his front yard. We always had a fun evening when we got together. They are great friends and a wonderful family.


Last week, at age 52, our good friend John McConaughey lost his 2 1/2 year battle against cancer. Even over the past 2 1/2 years he never lost his smile or his confidence. I think he enjoyed the fact that he fought the cancer much longer than any of the docs said he could.


Please keep Barb and the boys in your thoughts and prayers. Brenton graduates high school next month (with our son Travis). Chris and Ryan are in finals at college, Ryan is about to graduate from Virginia Tech.

Happy Mother's Day

Happy Mother's Day.

Take nothing for granted.

Hug your family.

Enjoy life.

Value your time together.

Make the day worth remembering.

Repeat the above every day of your life.

Happy Mother's Day.