Alexis was diagnosed with DIPG on April 10, 2008 at the age of 2. Alexis lived life to the fullest while battling cancer with courage, dignity, and grace for almost 3 years.
On January 14, 2011, Alexis earned her spot in heaven just two weeks before her 5th birthday. She was an inspiration to many, and she is missed dearly.
Alexis' Story -- by Neely and Jon
Our lives were forever changed when on April 11, 2008, our beautiful 2 year-old princess Alexis was diagnosed with a brain tumor in her brainstem called Diffuse Intrinsic Pontine Glioma, or DIPG. It is not operable, and the prognosis we have been given is very bleak. The standard treatment for this type of tumor is radiation. While in the majority of children radiation will help shrink or maintain the tumor, it generally returns within a matter of months.
As a result, to help increase the chances of successful radiation, Alexis participated in a clinical trial with radiation and an experimental chemotherapy agent, Gadolinium Taxoferin, for 6 weeks in May and June of 2008. The Gad Tax was used as a radiosensitizer in an attempt to help the effectiveness of the radiation on her tumor.
Alexis' first post-radiation MRI was on July 30, 2008 (a day before she turned 2.5 years old). This MRI showed shrinkage of the tumor (estimates of between 25 to 50 percent), and very little enhancement. Her next MRI is scheduled for September 22, 2008, and we are hoping for additional improvement as her radiation therapy hopefully continues to work.
Alexis was on steroids to reduce swelling in her brain from the date she was diagnosed until early July 2008. She is now steroid-free, and we are happy to see our sweet and fun-loving daughter return back to herself, both physically and mentally.
Alexis is a brave little two-year-old, who (to date) willingly takes the many supplements, vitamins, and natural therapies we give in her in liquid drops, broken up capsules, and dissolving pills. We consult with Dr. Jeanne Wallace, a nutritionist who works with many pediatric brain tumor patients. Alexis also takes Dr. Banerji's regimen of Ruta6 and Calc Phos. Alexis' daddy, Jon, was recently trained in Reiki and gives Alexis Reiki treatments on a daily basis. Recently, we travelled to Cleveland for an appointment with Dr. Nemeh, a faith healer who is an MD that has been credited with the healing of many sick people through prayer and complimentary therapies.
As you can imagine, we were completely devastated by Alexis' diagnosis. It was a complete and utter shock to us. The only symptoms she had prior to diagnosis was occasional vomiting (which was being treated as reflux) and starting on April 7, her right eye began to intermittently go cross-eyed for less than a second.
We will continue to update this blog as we can so that friends and family can informed on how Alexis is doing and where we are in her medical treatment.
Thanks again for all of your kind words and loving support. Please continue to pray for a miracle for Alexis!!
Neely and Jon
Dec 10, 2013 8:59amFive years ago today I picked up my phone in my office, not knowing who was on the other end and I heard a voice. Immediately my stomach dropped. It was December 10, 2008, things were calm in my office, it was nearing holiday break schedules for everyone. I heard the voice say "we are losing control." The voice on the other end was one of Alexis' primary neuro oncologists. Those words struck me hard. The explanation was that Alexis' most recent MRI showed a very slight amount of growth. Those words failed to match up with how Alexis was doing clinically. There were no issues to report, she was outwardly as healthy a child as possible. Diagnosed in April 2008, it seemed so unlikely to hear those words at that point. But there they were. "We are losing control." Five years later we have lost a true measure of control in our lives. We have suffered an immeasurable loss. Five years have been unreeled from our lives from that point. There was no Gabe then. He would be born nineteen days later. We truly have lost control of so many aspects of life. Losing Alexis continues to shape our lives more than anything ever will. This January will mark three years since she passed away. I truly do not know where that time has passed. We are all so very different from who we were in March 2008, April 2008, December 2008 and then January 2011 when we lost her. There are times when I simply do not recognize this life despite its vague familiarities.
In just a few weeks, Gabe will reach a milestone that Alexis was not afforded; his fifth birthday. 5. We think about our lives and take any single five year chunk and it doesn't seem altogether that long a period of time. But for Alexis, it was a lifetime on this earth. I remember when I outlived my sister. The realization struck me. And now, to see the first one of my remaining children outliving another, it is simply surreal at best.
Recently I got a new tablet computer. Usually I put something innocuous on the screen as a picture. On my computer I have a sunset picture I took while on vacation. On my phone I've egotistically placed a photo of myself crossing a triathlon finish line pointing to the sky thanking Alexis. But on this new tablet I put a picture of Gabe and Trevor. I feel completely uneasy about this and have thought many times about changing it back. It seems quite a disservice to Alexis to do this despite how much I love my boys. It is these daily wranglings that filter into our lifeblood. Welcome to five years later to the date that we "lost control."
In the interim, we put on our 5th National Race Against the Odds raising around $65,000 for pediatric brain cancer research. That brings our five year total to around $350,000.00. A figure we are truly proud to announce. The race was such a significant effort this year and the only reason it truly came off as well as it did was because of Neely's hard work and dedication. She is the driving force behind our work with The Cure Starts Now. I have continued my advocacy and lobbying work. If you haven't had a chance to do so, head over to:http://www.huffingtonpost.com/jonathan-agin/ and check out some of my pieces in the Huffington Post or to :https://cancerkn.com/?s=jonathan+agin and check out my work with Cancer Knowledge Network. My continued reinvention into a childhood cancer advocate is probably the largest formative aspect of my life. It is all because "we lost control."
Our life is not without joy though. Please do not get the sense from these words that joy is absent. On any average day, when we are not trying to get Gabe to listen, or trying to get Trevor to do as he is told, we are filled with play and smiles. We enjoy being together as this partial family. We enjoy doing the trivial things in life that bring others who have not "lost control" joy. There are always undertones of course. But I suppose we all have our own cross the bear. Life does not move upon a linear path. It is a crooked road with bumps and rises and ditches. It is how you move and traverse through those obstacles that demonstrate your true character. I hope that at the end of my time, people remember me as a person with character. A person with conviction. A person who did not shy away from the fight. In the end, that is how I remember Alexis. Despite the fact that "we lost control," and Alexis no longer inhabits a place in our house in a truly blood and flesh manner, she has shaped me into a person I never would have imagined. And for that, despite the fact that we have "lost control" I am truly and forever grateful to my daughter.
Happy holidays to all.
And so, with every moment that passes, we are taken one day further, yet one day closer to Alexis. Soon baby, soon.
Jon, Neely, Alexis, Gabe and Trevor
Guestbook signed 0 times today
We cherish your messages. Take a moment to write a note in our guestbook or read entries from other visitors.
Alexis's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.