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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!!

Love,

Neely and Jon

Latest Journal Update

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’ bedroom.  From October 2010 until the day that Alexis was taken from us we spent many hours surrounded by friends and family in that “pink room.” That room became a shelter in the storm that developed into our lives.  It was in that room that we held Alexis as she transcended the earthly bounds that cage us all.  And, beyond that terrible date in January 2011, Alexis’ room became a place that I escaped to in an effort to find a connection.  Visit her bed, stuffed animals still in place.  Items that we utilized with hope for healing.  Her room became a location for me to simply go to that place that brought me to my knees in tears and desperation for the ability to simply see her again, feel her presence.  Each night before heading to sleep, I would open up Alexis’ door, spend my quiet moments in thought and reflection and simply be taken into that universe of connecting pain. 

For fourteen years we have resided in the same house.  It was not supposed to be that way.  This was a house we were supposed to be infor three to five years.  Now, don’t get me wrong, I love our house.  Alexis, Gabe and Trevor all were “born” there.  It was where I took refuge after my sister’s death in 2002.  It has been the castle that has provided shelter through many unimaginable storms. And so, when we decided that it was time to finally act upon our three to five year plan the gravity and reality of moving from “our” house struck me with full force and shook me to my core. When this decision was made and we finally moved Trevor into Alexis’room in many respects that portion of my connection was severed.  Moving Trevor into Alexis’ room was difficult.  Removing a significant amount of Alexis’ belongings, clothing, and animals was like a knife in the heart.  Neely marshaled the task with an amazing strength that inspires me.  Neely was the one who was undertaking the task at hand and she did so with an unimaginable strength that belies the amazing person she is.  It was a knife to her heart without question; but she knew that what our family needed was more room, a house that worked for us now, and in the future with whatever changes may come...

We will walk out of our current house on July 18th and begin anew.  I’m excited in so many respects for a new house.  More space for all that we have amassed over the past fourteen years that we have made a life in our current house.  Gabe and Trevor will have more room to play, run around and give each other a loving punch, shove or even the occasional hug.  I will have an office that I can work out of and become more productive.  This presents a real opportunity for us to create new memories.  That is the good part of our upcoming move.  And don’t get me wrong; I’m truly excited about all of these prospects.  It’s just that I am grieving the loss of what our current house represents and that amazing connection that it allows me to have with Alexis.  Of course Alexis is “coming with us.”  I hold no thoughts that this is not the case.  In fact, we intend to set up her room in the new house. It simply will never be the same.

Since Alexis passed away, there has been this significant part of my being that has hoped beyond reason and rationale that I would have this significant encounter with Alexis’ spirit, her energy so to speak.  I don’t know what I expected this to look or feel like.  Yet, I have always hoped that I would have this moment of clarity that I could without question feel her presence and being.  Maybe this has occurred and I simply have not taken note, or it has been subtle.  Maybe Alexis has been there with me each and every day, providing me with the “emotional sustenance” to take one step at a time each day since her passing.  Heavens knows that the path since we lost her has been filled with difficulties both from the inside and others who I once considered to be confidants.  Anything is possible I suppose.  I just have this notion that this feeling of closeness and connectivity would strike me over the head and provide me with this moment of pure elucidation leaving no doubts.  And, although I have never had that moment even in her room, though I’ve tried to create it on many occasions, it is as though another piece of me is being ripped away.  It is by choice though, and so “don’t cry for me Argentina.” 

Moving certainly does not foreclose the possibility of this singular feeling of connectivity mind you. I often sit on the bench before Alexis’ marker at the cemetery and pray and hope beyond all rational thought that maybe just once I will see a vision of Alexis, feel her spirit connecting with me or experience some unexplained occurrence that unequivocally is Alexis being present with me.  That has not happened.  It is often through the pain that I experience simply by experiencing life following her loss that provides this connection.  Or, there are times when I’m training for a triathlon, running or out on my bike, the pain building up in my legs and lungs, that I find this connection. 

So yes, a house is just a house no matter how much of a home you made out of it.  Most of us live in a house or apartment that once was occupied by someone else.  They had experiences there just as we do.  Those people are long gone either physically in body in that location or on this earth.  We now inhabit “their house” and that connection the former resident feels or had is gone.  Life moves, it flows, and it changes.  That is not necessarily a bad thing.  Change in the form of moving to a new house that presents new opportunities and an ability to make a better life is a good thing.  It is exciting.  I frankly am very much looking forward to this next chapter.  It simply will never be the same again once I take my final steps from that “pink room.”  And that is when a house transcends simply the bricks, mortar and wood that make up the physical bones. 

Today we begin the road to another new chapter in this story.  One that we hope, no we pray,will bring better days and roads that don’t rise against us.  One that provides us with opportunities and boundless energy for a future that is open to us.  One that provides us with more family time, more time to remember clearly, more time to honor Alexis and continue to grow her legacy.  One where her spirit is evermore present, bringing us comfort knowing that there will be a time down the road when we can reunite in the sweetest of experiences.  I hope…

I promise I will write a more substantive post updating everyone(who may still be reading this) on our activities.  At the end of the day, we are “ok.”  And that my friends is all relative. 

As always, the days pass and we are brought one day further from Alexis, yet one day closer.  Soon baby, soon.

Love,

Jon, Neely, Alexis, Gabe and Trevor.  

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Comments

39 Comments

Candyce McCann
By Candyce McCann
Thinking of you all, now in your new home. I know that you have made it your own, bustling with activity. I pray that your three spirited children are felt throughout each room. God bless you all, and God love sweet, precious Alexis.
Marge Castee;
By Marge Casteel
We understand your feelings! Just wanted you to know we are continuing to pray for you and your family. - family of Jameson Casteel (02/13/1997 - 10/21/2009)
Glenda Harlan
By Glenda Harlan
Catching up on things today. Best wishes as I imagine you are now settled in your new home. Praying you will feel Alexis's spirit in new and different ways!
Anne Gouin
By Anne Gouin
Wa.rm wishes to you all ...including Alexis as you settle into your new home. It's an emotional decision for anyone to make change, so I can only imagine what it took to make this choice. I am sure it will be a great step for your family and wish you all the joy in the world as you build a future there together
Kim Vaughn
By Kim Vaughn
Warmest wishes as you make this new house your "home"...and I know Alexis will always be carried with you. I'm glad you have the space to give her a room in the new family home, too. I know how many memories your old home carries, and how emotional it must have been to make the decision to move...and then to actually drive away. I pray your family is given comfort, and sweet signs from Alexis....and always for blessings and sweet moments to fill your new home and future with joy.
Patti Robertson
By
Still reading your post and you and your family are still in my thoughts and prayers. Many blessings with your new home.
LaRue Withers
By LaRue
Congratulations on your new home. You already understand that no matter where you go or live Alexis will be there in your heart. I am praying that you have a dream of Alexis. Some time after my Mother died I had a dream about her. She was in her bedroom, but the bed was in a different place and she was half sitting, half lying but laughing and enjoying whoever else was with us. So, I understand your desire for that "experience" of Alexis. It gave me great comfort and I will pray that God will grant you such a gift.
In His love,
Beth Fox
By
John,
I have followed your post for years as I was Andrew's physical therapist (actually much more than just his PT). I want to share with you two "moments" that I have been blessed to have been given. Working with children was and is all I have ever wanted to do. However, in my 25 years as a PT. I have lost 12 of my "kids". It is never easy and at one funeral I had a wonderful moment when I just felt the spirit of my great Aunt in the room. She comforted me and told me she would take good care of this dear baby . Years after I lost another child whom I had an especially close relationship with the family, I had a beautiful dream. She was talking to me and we had a great conversation. So, I believe you will have moments with Alexis and it will provide with peace. It won't take away your pain but I have found it has given me just a little peace. However, I am still waiting for Andrew to show up! I miss him so much and still feel so much pain. I talk to him all the time and listen but just haven't heard back from him yet!
Hugs,
Beth Fox
Ashley Metz
By Ashley Metz Leax
Thinking of you guys this weekend. Thanks for sharing and allowing us to continue to be part of Alexis' journey. Your honesty is always refreshing to read.
Carol L
By Carol Locklin
I think of your family often and I was wondering how you were all doing. You will feel her presence when you are not expecting it. I am going through a rough period in my life now. Lately I have seen a lot of butterflies, they fly in front of my car while I am driving, if I stand outside, they fly by me or around me. I saw a cardinal the other day which is rare in July. I think it is a sign from my parents that they are with me and that everything will be all right. Much love and happiness in your new home!