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Alexis’s Story

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

Latest Journal Update

2014: The year that was; and the hopeful year that will be

Life takes many winding and unexpected turns.  I suppose that is quite an understatement in many ways.  When I sit back and look at where I came from, where I wanted to be, and where I am today, I hardly recognize the paths that I have chosen to walk and those that have been forced upon me.  I have been forced to endure the difficult path that the loss of my sister brought upon myself personally, as well as Neely and my family in general.  And then of course, we have been forced to walk the path that the loss of Alexis brought upon us.  Alexis’ death has caused us to struggle personally and professionally.  As parents, Neely and I physically watched as Alexis left us here on earth.  We saw that moment and will see it and live it for the remainder of our lives. There have been many immense difficulties that have been played out in our lives over the past twelve years.  These were the paths that were chosen; they were not of our choice. 

In 1996 I made the decision to go to law school.  At the time, I was very unhappy in my job in sales and marketing and wanted to do something bigger.  In full disclosure, I went to law school because I wanted to run for public office. In 1999 I graduated law school and took my first job practicing law in Washington, DC.  My first job was initially a difficult one because of the senior attorney I was working with, but as time went by I began to truly enjoy the practice of law.  It clicked. And then April 10, 2008 happened. It was the day my cellphone rang, and on the other line I heard Neely say, “they found a mass on Alexis’ brain.” I was two and a half hours away at a deposition in Virginia and felt like I was stuck on the moon.  I felt that far away.  Alexis’ journey and fight lasted from that day until January 14, 2011.  Along the way on this forced path something happened; I transformed into a childhood cancer advocate.  Never would I have envisioned this part of the journey or this destination during the course of my life.  I found a voice and purpose that I felt like people heard, supported and were willing to stand alongside.  I felt like I was making a difference for children with cancer and their families, and it provided purpose from an otherwise purposeless and tragic experience.  Alexis' journey is the journey of our family now.

Over the past two years I have struggled trying to balance the desire to become increasingly more engaged with childhood cancer work as well as maintaining the practice of law.  It has not always worked and there have been specific periods of tension and struggle. There have been many trying professional times that have brought me close to the brink.  I will continue to have to manage some of these over time. The experiences of the last five-plus years have brought me to the proverbial fork in the road on this journey. I have been very fortunate to have the support of Neely throughout, although I know that it has not been easy. Truth be told, I can be a very difficult and closed off person in many respects.  I'm a work in progress as they say.  With that said, I believe I am guided by Alexis’ journey, her inspiration and the passion that this experience has ignited.  I simply cannot turn away from this fight at this time.  It has been a quest to bring meaning to my life and be able to choose the right destination for this passion. 

In November 2013 I was asked to attend a meeting on the lack of pediatric brain cancer drug development at the SNO Conference in San Francisco.  After the meeting, at a cocktail reception, Charles Keller, MD (then from OHSU in Oregon) approached me to discuss his vision for shifting the paradigm for the stalled translation of childhood cancer research from lab to patient.  Out of those conversations and the many months that ensued thereafter, a bold non-profit childhood cancer research laboratory was formed.  The Children’s Cancer Therapy Development Institute, located in Fort Collins, Colorado (cc-TDI) for short, was created.  The lab holds one mission: to conduct the basic scientific research that will be utilized to prioritize new drugs that are initiated in clinical trials.  The lab operates with the ability to work faster, cheaper and without the red tape that plagues the manner in which research is currently being done.  More importantly, the lab will operate with transparency and accountability to the childhood cancer community ensuring that the research being done in the lab translates into the clinic with the ultimate goal of making childhood cancer universally survivable regardless of diagnosis.  It is a bold mission.  More needs to be done to provide effective and safe treatments for kids with cancer.  And, more importantly, parents shouldn’t be left to hope that the blind darts being used to treat their children may potentially hit a target.  cc-TDI is not a charity that puts on fundraising events to fund research. Rather, it is a non-profit; IRS recognized 501(c)(3) tax-exempt laboratory actually doing the research. The lab depends on the philanthropic generosity of individuals and foundations alike.

So here goes; a not so humble ask.  If you have the ability to help us financially in our mission at this critical time by heading to our website ( and clicking donate, any amount is more than appreciated.  (you can do so in time to receive one more tax write off for 2014).  I know we’ve come to everyone in the past for this type of support, and thus I want to be respectful of all the different requests that people receive.  There are so many amazing people out there and incredible organizations involved in this fight and I’m humbled that we are a small part of this community.  Thank you does not seem sufficient.  If anyone would like to learn more or learn about how you can become involved, please just say the word.  

And so, I turn the page from 2014, which in many respects was one of the most challenging, trying and difficult years of my life, outside of 2011 of course, and head into 2015 with renewed hope and increased fear at the same time.  Hope that other parents who hear the same words that Neely and I heard in 2008 do not experience the same outcome.  Hope that there is purpose from the most devastating moments of our lives. Fear that as I work to engage more deeply with making childhood cancer work my focus that the challenges will be too great to overcome. 

We come to difficult moments in our lives.  We will mark 4 years since that horrible day when Alexis passed away.  As January looms large, the days begin to weigh upon us.  I simply cannot wrap my head around this fact.  It seems so distant and removed, and frankly, my memory is working against me at this juncture.  Alexis is always on my mind, but so many of the experiences are fading. 

And so, as each day passes, we are taken one day further, yet one day closer to Alexis.  Soon baby, soon.  I'll try and write a less formal update on how we are all doing shortly.  I do miss writing here....


Jon, Neely, Alexis, Gabe and Trevor


58 people hearted this



Kristie Shaw
By Kristie Shaw
I have just completed reading every entry you have written since the first day until this entry. I never knew any of you. But I feel as though I did. Just know I will never forget Alexis. Xo
Karen Lang
By Karen Lang
Jon and Neely,
As we are now into January, I never forget that this is Alexis's birth month and month of her passing. I miss you as neighbors, but hear that you are happy in your new home and I wish you all the best in your new neighborhood. And we are so fortunate to have a wonderful family with a dear little boy and elderly dog who love living in your former home. It's a happy, sunfilled and beautiful home.

You both have been through so much over the years and I understand, Jon, that perhaps the memories fade for you because there has been so much stress and overload during those years. But please know that I, for one, have lovely and sad memories of having the pleasure of knowing and being "entertained" by Alexis outside our front doors. Etched in my memory are her chalk drawings on the sidewalks, her returning home with Bubbie and showing me her school projects, her blowing bubbles on your steps, greeting and petting my dogs and her valient struggles in later years to walk and keep up. And her last Halloween that you brought her through the neighborhood in her costume in her stroller. She looked so sweet and beautiful and Gabe was so good about collecting treats for himself and his big sister. I am sure that there are countless others that have wonderful Alexis memories.

Jon, please continue in your quest to find a cure for this horrible child brain cancer. You have a huge voice and presence and I belive that you will make great strides in raising public awareness and funds for research and a cure.

Neely and Jon - you both are amazing in your strength and dedication to keeping Alexis' legacy alive and finding a cure for her brain cancer. Alexis will never be forgotten.

Love and all the best to you and your family,
Sue Lea
By Sue Lea
That you for writing - you have a gift. My thoughts are with you and your family - I would think Alexis is beaming with proud at the work her daddy (and mommy) are doing.- God bless you all!
Pam DeLong
By Pam DeLong — last edited
Thank you for keeping us updated. You are working for a great cause. Alexis is a beautiful angel in in heaven - but her memory lives on in everything you and Neely do!
Chris Kostik
By Chris Kostik
Thank you Jon for your update and especially for your work towards better pediatric cancer research. I had no idea until my daughter Emily was diagnosed, how little effort is put towards helping these kids. Monday January 5th will be Emily's one year Angelversary.
1 person hearted this
Sheila Jones
By Sheila Jones "Always Sammy's Grammie"
Jon. You will succeed. You and Nelly are a great team. You energy and positive thoughts-actions are indeed seeing rewards going forth for a cure. All because the love you have for Alexis. I admire you both, for a cause which takes us to our knees. I hope that 2015 brings you peace, strength, and positive thoughts as you go forth. 💚
1 person hearted this
Jan Soeldner
By Jan Soeldner
I have missed your posts, but have not forgotten Alexis or her family. God bless you and your family always. Will continue to spread the word of inadequate/funding/research....
1 person hearted this
Deborah Weir
By Deborah Weir
My prayer for you is peace....
1 person hearted this
Margy Jost
By Margy Jost
It is such a kind thing to share personal parts of your life that have led you to this important place, that has the great possibility of impacting so many families. It is so admirable to try and make a difference for others in an effort to keep them from the ever present sorrow in your life of the loss of Alexis in your day to day, present life. Alexis will always be in your life but your dreams and hopes for all that you envisioned changed in 2008. You and Neely are truly an amazing couple. Ken & I will always do what we can to support you and the difference in Pediatric Oncology Research, you are trying to make. I will pass this information to other people, who feel as we do, that more needs to be done. Children diagnosed with Cancer need a better fighting chance, less toxicity in the drugs, they do take and more hopes for complete cures. I know it is one step at a time but I feel impatience like you do. Thank you for including us in this heartfelt letter. We will always stand with you and Neely. I will always remember Alexis. Margy
Diane  Rohrbach
By Diane Rohrbach
Thank you for sharing this information and as always your personal story and journey.Please keep writing as I will keep reading and remembering. If you ever do run for public office please let us know because I know you will have the support of all of us here.