Courage

by

Hugh Paxton’s Blog got this from Prisana. It’s rated a Hugh Paxton Blog 5 Star courageous.

Begin forwarded message:

From: Prisana Nuechterlein <prisanan>

Subject: Courage

Date: July 22, 2016 at 1:33:16 AM EDT

To: Hugh Paxton <paxton.bkk>

Dear Hugh,

Where There is A Will, There is a Way

http://support.childrenscoloradofoundation.org/goto/prisana2016

Only 1 Day left for my big annual ride! Please help me reach my goal of $2,500 by donating any amount. So far I have raised $915 toward my goal and believe I could reach it with any help you could please give me.

This is my 3rd Courage Classic and every year, I am overwhelmed by people’s immense generosity and heartwarming support. Thank you beyond measure for helping us to further aid other children at the amazing hospital that saved my son’s life in 1998.

At 15, my son Brandon was diagnosed with Aggressive Leukemia (AML and ALL) while we were living in Phuket, Thailand. At the time we had little knowledge about leukemia, nor what his chances of survival would be. I can’t describe the devastation that I felt in Bangkok, upon learning that his diagnosis came with a 30% survival rate. There was no one at the Bangkok hospital to guide us through the fear and pure panic upon realizing that my adorable son, who was experiencing extreme pain the week leading up to his diagnosis, could indeed die from this disease.

For a couple of months prior to his diagnosis, high fevers caused him to wake up drenched in sweat and he was experiencing pain that I mistakenly thought was either sports related or growing pains. The doctors on the island of Phuket, Thailand​ where we were living guessed at several possible diagnoses: could it be a slipped disc from playing rugby? Malaria? Dengue fever? Cancer was not even considered and when the doctors suggested exploratory surgery (the day after I admitted him due to his sudden weight loss of 10lbs and high fever), I knew we were in a truly dangerous situation.

I would not agree to the surgery because Brandon’s platelet count had plummeted to a dangerously low level and surgery would have killed him. His symptoms worsened and he went into septic shock. Bacteria had infiltrated his bloodstream. His white blood cell count spiked to 250,000. Normal range was 5,000 to 10,000. That meant his body was attempting to wage a futile war against a mysterious infection.

In desperation, I called Children’s Hospital from Phuket and talked to a doctor who was on call working in the cancer ward. From across the world, the kind doctor told us by phone that Brandon most likely had leukemia. In 5 minutes, the doctor from Colorado had managed to diagnose Brandon based only on my description of what had been happening.

Meanwhile, the doctors in Phuket, truly did not have a clue. They kept saying that it was dengue fever and I would argue that it couldn’t be. I admit, I was unable to reign in my fear and frustration and often was quite angry at the team of “healthcare” providers that were treating Brandon at this hospital. I challenged them by asking them “if they had ever seen a case of dengue fever with such a low plalette count??” Their answer was finally a definite “No,” admitting that they did not know what was wrong with my poor son.

Almost immediately after the phone call, we flew Brandon up to Bangkok, where he was given a lumbar puncture – also called a spinal tap to remove cerebrospinal fluid (CSF) surrounding the brain and spinal cord to detect whether blood cancer cells were present confirming leukemia. Shockingly, the doctor performed this excruciating procedure without any local anesthetic! Even worse since the doctor could not get any fluid, he actually chipped some of Brandon Nuechterlein​’s bone to get a sample. Unbelievably cruel! In the US, you would never get a spinal tap without the use of a local anesthetic to numb the area beforehand.

During the procedure, I was trying to convince myself that he didn’t really have leukemia, praying to the Universe that everything would be fine and that the tests results would prove that he had some other easily curable ailment. Only a short time later, the results came back and our lives forever changed.

“Your son has AML and ALL,” the doctor said definitively. “His chances of survival are zero, unless you can go back to the U.S. for treatment.” Back in 1998, Thailand did not have a bone marrow transplant facility which it now has.

We were on a plane the next day, and it was the most stressful and scary flight imaginable. Brandon was in immense pain and even though he was in pain meds, the pain meds did little to alleviate his suffering. It is hard to relive all of this by writing it. It is heartbreaking to know that so many children and adults in Thailand are presently dying from leukemia, without any chance of survival because their families cannot afford the high expense of the treatment. Brandon was extremely fortunate and on Dec 17 1998, after weeks of total body radiation (3 days straight) and high dose chemotherapy that caused every cell in his body to vomit (a few times he would nearly choke while vomiting horrible softball size blood clots) he was finally ready for a cord marrow transplant.

I can never thank the amazing team of doctors, nurses, financial aid counselors and everyone that we interacted with at Children’s Hospital, enough for their compassion and total dedication toward helping children to survive an untold number of horrible diseases.

A few of the children I bonded with over the course of practically living at Children’s for a year, showed me courage that will forever inspire me. They got their legs and arms amputated; they had severe reactions to chemotherapy that I won’t describe because I want to spare you from the reality of what a cord marrow transplant involves and what cancer does to children. In the movies, it looks like a cord marrow transplant is over within one day. Yes, the actual procedure does look like a blood transfusion, but in order to get the marrow, every cancer cell in the patient’s body must be killed off which means good cells are also killed off in the process. The treatment has changed radically since 1998, but it still really really sucks. Simply put. It took a year for Brandon’s immune system to build back up to a safe level and I am beyond happy to tell you that he has been leukemia free now for over 18 years!

Following Brandon’s transplant he was so weak that he could barely walk up a flight of stairs. The idea of riding 157 miles over 3 mountain passes was unimaginable. However, “where there is a will, there is a way” and thanks to the dedicated team at Children’s and their tireless efforts, Brandon was able to complete this ride the past 5 years, raising over $35,000 and recruiting 40 additional riders to help other children battling cancer. Brandon’s dream was to one day work at Children’s Hospital in the center for cancer and blood disorders and his dream came true 6 years ago. He now has the privilege of helping other children overcome their cancers and hopefully a couple of mountain passes as well!

This year our Wheels of Justice team will ride to honor the memory of Delaney Goodner, of Kick Cancer’s Ass. Delaney was diagnosed with alveolar rhabdomyosarcoma, a rare childhood cancer, on June 10, 2008 when she was 13 years old. Delaney’s treatment over the first 6 months went very well. The tumor reduced to just a spectacle. Delaney endured 3.5 years of treatment, never giving up, until she passed on December 9, 2011. The Goodner’s started Kick Cancer’s Ass in support of Delaney and all children with cancer. They have ridden in the Classic for 6 years now, raising a combined $114,265!

Thank you for reading and sharing our story and for helping us to save the children. Your donation of any amount would be greatly appreciated. Even $10 would be a big help! It all adds up!

Prisana Nuechterlein
Mobile: 303-895-8164
http://travelthailandandbeyond.blogspot.com/

Please go to the following link to donate to Prisana Nuechterlein’s Courage Classic Ride. Thank you!
http://support.childrenscoloradofoundation.org/goto/prisana2016

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