Tristin Greer's Journal
Written Mar 4, 2013 7:09pmWe've had a really nice past couple of weeks. Tristin is feeling good and isn't complaining of anything. He even started playing tennis with his school team. I'm so thankful he doesn't let anything hold him back and he's out there being a teenager and living life as he's suppose to.We go back to Michigan next week for scans. I just have to believe that the way he feels right now, it's a good sign that scans are going to be good and we will continue on the DFMO trial. If things are stable or improved, we probably won't have to go back for 2 months. Wow, you have no idea how good that sounds, normal life for 2 months.....However, if there's any new spots , we'll deal with it with our heads up, stay determined, and continue to fight like we always have and know that God is in control.In April, we will be running/walking in the Nashville St. Jude's Country Half Marathon with Emily's Power For A Cure. Bronde and I did the Chattanooga Half Marathon last weekend. It went about like I expected. I saw Bronde for the first minute and then she left me in the dust. By the time I finished, she was already back at the coffee shop making lattes and smoothies. But I did finish and within the cutoff time limit :) Here's a letter I'm sending out to businesses and friends. I just copied and pasted it. If some of you would like to donate to our fundraising page, that would be wonderful. The money my family raises will go to Neuroblastoma cancer research and to help with Tristin's travel and medical expenses. If you can't donate anything, that's fine too. We understand. I'm just so thankful we have so many people lifting us up in prayer, thinking, and caring about us. That means more to us than you will ever know.God Bless,Jason
"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere, and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light." ~ Author Unknown
Three years ago, our lives were changed forever. As a parent, there are certain things you should never have to hear. I pray that you will never have to experience what we were told three years ago, that our beautiful 13 year old son, Tristin, had Stage 4 Neuroblastoma cancer. After several trips to the pediatrician and ER for stomach and back pain, an ultrasound was ordered and revealed a water bottle size mass in his abdomen. I remember praying every day and night for the first couple of months hoping that this was all just a bad dream, that I would wake up and everything would be ok, that everything would be just like it was before. But it wasn’t a dream, it was real, and it was happening to us. How could my perfectly happy and healthy child all of a sudden be diagnosed with a cancer!? How is that even possible!? I had always seen the St. Jude’s posters with the cute kids on them and hoped that they would be ok, but I never ever for once thought that would be us one day……..
Over our 3 year battle, Tristin has endured 25 plus rounds of chemo, over 30 sessions of radiation, humanized antibodies, 3F8 antibodies, needle sticks, blood and platelet transfusions, countless overnight hospital stays, several surgeries including 1 major 12 hour surgery removing the massive tumor that was wrapped around his aorta and vena cava arteries, numerous bone marrow aspirates, MIBG, MRI, CT and PET scans, etc, etc….. We have spent the last 2 ½ years traveling each month to Memorial Sloan Kettering Cancer Center in New York for treatments. Last month, after scans revealed the disease was still slowly progressing, we were told our options were getting low and they recommended we seek out new trials elsewhere.
After a couple weeks of uncertainty, not knowing what was going to happen or where we would end up, we were able to get on a trial in Grand Rapids, Michigan. Tristin started a new clinical trial on compassionate use basis called DFMO. It’s a Phase 2 trial and was funded by organizations just like Emily’s Power For A Cure that help raise money for new clinical trials for Neuroblastoma research. I will never be able to thank all of these wonderful organizations enough for giving us new hope and new opportunities.
On April 27th, my wife and I will be running again in the Nashville St. Jude’s Half Marathon in an effort to raise money and awareness for children’s cancer research. The money we raise will go to Neuroblastoma research and help us provide Tristin with the best treatment options available during this financial hardship. Hopefully, Tristin will feel good and be able to run it with us again this year. Even after enduring so many rounds of radiation, chemo, and antibody treatment last year, he was determined to do the half marathon and he did! I couldn’t have been more proud. Tristin’s faith, courage, determination, strength, and will is unfaltering and he will never give up on this fight and I will never give up on searching for a cure for him.
~What Cancer Cannot Do~
Cancer is so limited ~
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit
Please consider giving a donation to Emily’s Power For A Cure and help us fight childhood cancer. You can make secure online tax-deductible donation at
No amount is too big or too small. If you’re not able to donate at this time, I completely understand. If you would, I just ask that you please keep us in your prayers while we continue on this journey. God bless you and your family and thank you for taking the time to read our story.
We keep all of our friends and family updated on Tristin’s Caringbridge page at www.caringbridge.org/visit/tristingreer
With Love, Hope, and Faith,
1409 Wingate Lane
Hixson, TN 37343
Written Feb 19, 2013 11:34amWell, we finally made it home Sunday around 3:00 in the afternoon. We were suppose to have gotten in 10:30 Saturday night but after several delays in Charlotte, they cancelled our flight and we spend the night at the airport. They had snow and ice that day and almost shut everything down. Each plane going out had to be de-iced and had everything backed up. I'd say there were about 2000 people or so stranded overnight with us. But we were fine. Tristin felt good and other than being inconvenienced, we were ok. The Red Cross handed out blankets, cots, and water and the internet at Charlotte is as good as any airport we've been at so it helped past the time. Just another story we can tell when he gets older.....We get to stay home for the next month and will be back to scan the middle of March. We'll enjoy each day of "normalcy" and I'm so thankful for the opportunities we have in Grand Rapids with Dr. Sholler and the new friends we've met.Bronde and I will be running in the Scenic City 1/2 Marathon this weekend. Well, she will be running and I will be mostly walking. I'll see her for about the first 1/4 mile and then she'll be out of my sight. I actually despise running but maybe one day I'll enjoy it (probably not though). At the time I signed up in early January it seemed like a good idea. It did motivate me to lose 25 pounds since New Year's :)Thank you for keeping us in your prayers. Please pray that Tristin does well on the DFMO trial and we will have great results with this. It's a little easier to breathe knowing we have a plan now....I feel a sense of peace that I haven't felt in awhile and I definitely don't feel as stressed as I was a couple weeks ago.With Love, Hope, and Faith,Jason
Written Feb 14, 2013 11:31pmOur meeting today with Dr. Sholler went much better than I had ever hoped for!! Over a year ago, I had heard about a Phase 1 trial they were doing called the Genomics trial where basically they go in and take a sample of the tumor, analyze the genetic make-up, DNA, etc.....and test the tumor against a couple hundred known chemo drugs, and then customize a personal treatment plan of medicines targeted for your specific type of tumor. Well the Phase 2 arm of this will hopefully be opening in a few weeks up here and she said that Tristin would be a good candidate for this! They are still waiting for the FDA approval before they can start and they never get in any hurry about anything which I don't get at all when you've got kids that are in desperate need of these new therapies!! Bronde and I have been wanting to do this for so long now and to hear her talking about this as an option for us was just emotionally overwhelming for me. I honestly didn't know when she came in the room if she was going to tell us "sorry, we just don't have anything we can do for you"......I had no idea what was going to happen and to hear her offering this trial to us when it opens was just a huge blessing and I just felt like a huge burden had been lifted from us. Praise God!!! It's been very overwhelming the past few weeks being in limbo and knowing that Tristin was already past due on receiving treatments. I kept praying that the Good Lord would lead us in the right direction and open the right doors and he has! Thank you to everyone for keeping us in your prayers and helping us get through these past several weeks!Some more good news is that we actually got to start on a new treatment today!! Dr. Sholler didn't want to wait several weeks for Tristin to start on something so she put him on the DFMO trial. Basically, since the trial is closed, she will get him the compassionate use approval. Its 4 pills twice a day for 28 days. best thing is that there's no side effects, treatments can be done at home, quality of life is amazing! So we will come back in a month and rescan. If things are stable or improved, we can opt to stay on this up to a year. Dr. Sholler is really nice and caring and everyone at the hospital has been very helpful.After all this today, I got back to our room and was just emotionally exhausted and had the best 4 hour nap ever. Basically, we've had over 2 weeks of total uncertainty of what to do, where to go, and all was resolved today and I'm whipped but couldn't be happier with how things went.Also, I want to tell you about some great friends we've made up here. Before we left, my firefighters union Local 820 reached out to the local union of the Grand Rapids Fire Dept and told them we were coming up this week. A firefighter named Travis Gurd got in touch with me and offered to pick us up from the airport. Not only that, but he didn't want us to be stuck at the hospital without any means of transportation so he loaned his car while we are here! I really felt bad because that's way beyond being helpful but he insisted and wanted to help. I was really blown away by this act of kindness. He's checked on us each day and made sure we were fine. We had the honor of going out to dinner with his lovely wife Dana and her wonderful mother Kim and his beautiful little girl last night. They've really made us feel at home being so far away. Truly great and very caring people. Tomorrow night he's going to pick us up and go down to the firehall and eat dinner with the guys.I also wanted to say thank you to Carolyn and Trisha. They're a wonderful family we know from Sloan that live near Grand Rapids and go here as there home hospital. Carolyn has checked on us several times and asked if we've needed anything. Very sweet of her. Her granddaughter Laura will be inpatient this week. We saw our wonderful friends Jessica and Brooke today also from Sloan. Dr. Sholler put Brooke up to squirting Tristin with her water squirting flower :) Brooke is on the Phase 1 of the Genomics trial and got good news today that her scans were improved! And our home clinic NB Rockstar buddy Tater got news today that he is NED!!Thank you once again for everyones love and prayers. I'm so thankful we have a plan in place now and Tristin is on a new drug and a new path and we are on our way to reaching NED!With Love, Hope, and Faith,Jason