My 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!!

Love,

Neely and Jon

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Jonathan Agin posted a new journal entry, "When a House Isn't Just a House...".

(I haven't edited this for typos or read it over, so bear with it and indulge me).A long time ago I wrote about sitting in “the pink room” that was Alexis’ ... Read more

Denise Marshall signed Alexis's Guestbook.

Thinking of your family as you endure a change, cant imagine that feeling of "letting go" but excited also for your family. Will hold you all in my thoughts and prayers ... Read more

susan rigsbee signed Alexis's Guestbook.

I will continue to read as you continue to write.  Your writing is emotional, intense and so very relevant each time.  Thank you. Read more

Glenda Harlan signed Alexis's Guestbook.

I still think about you guys and I remember reading along, and praying during that trying time for you and Alexis.  I hope you had a special celebration of a very special ... Read more

Ruth Warner signed Alexis's Guestbook.

Each time you post, the picture of a precious child shows up on my screen. Memories of the updates over the years come to mind.  My heart aches for you and your family.  ... Read more

Maggie Marshall signed Alexis's Guestbook.

HI guys sorry its late but thinking of you heaps and heaps. We went away this year on Georgias angel day 14th January to try an see if it helped. It didnt just had lots ... Read more

Kim Vaughn signed Alexis's Guestbook.

I continue to remember Alexis, and your family.  I pray that yesterday was filled with much loving support, and that you were given much comfort.  My prayers continue as ... Read more

Dena Hall Keep F.R.O.G.in'(Fully Relying On God) signed Alexis's Guestbook.

Hey there Jon. Have been wondering about you and it’s good to see an update. Meant to post sooner, and have been thinking of you all day. I wish there was something I ... Read more

Susan Francis signed Alexis's Guestbook.

Prayers for your family from Chapel Hill, NC. Your strength is amazing, and your love for Alexis knows no boundary! Read more

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