Ava London Doiron-Frankland, now 7 years-old, was 5 when diagnosed with glioblastoma brain cancer, as seen here, pictured months apart.
Nobody ever called cancer a team player but it does give some great perspective.
As some parents get caught up this time of year in the perceived unfairness of their child's team placements, here is a heart-wrenching "NOT FAIR!" story about one cheer family.
Two years ago, Ava (left in uniform, five years-old at the time) and her younger sister Ella (being hugged by Ava) cheered at East Celebrity Elite where their father, Jeff Frankland, is a coach. The family has had strong roots in the cheer community for more than 20 years, including when Jeff was an NCA coach.
Then the first of Ava's three brain tumors and the diagnosis of glioblastoma brain cancer changed their life.
While Jeff became Ava's main caregiver, the girls' other father, Michael Doiron, worked as a manager at a well known, national pharmaceutical chain.
That was until April when Micheal lost his job and with it the family's health insurance which covered the $5 million in medical expenses for Ava's treatment (which he writes heart-wrenchingly about below).
Also in April, Ava started having seizures and the newest tumors (three on the cerebellum and three on the spine) were confirmed. Last week she was seen several times at Mass General Hospital for Children and ultimately admitted on Saturday night. The family will take Ava home today with a home-hospice treatment plan until the ultimate outcome (which Jeff writes even more heart-wrenchingly about below).
I started CheerMAD as a resource to support cheer moms and dads and I can't think of any better way to support a cheer family than to reach out to this wonderful CheerMAD community now. Last year CheerMAD had 3.7 million impressions -imagine if each came with a $1 donation!!! I realize that many CheerMADs are financially strapped because of the cost of the chosen sport of our children but I am immensely moved to ask for any support for this family now which can be done at: Ava's Go Fund Me
NOTE: There are other ways beyond financially that you can help this family that are listed at the end of this post. A drive to get the family on the Ellen Degeneres show and subsequent aid was started today by several cheer moms from ECE. Complete your form at ED Form
Like many of you, I have been following Ava's story for the two years since the first diagnosis through her fathers' Facebook posts. They have graciously agreed to share the most recent of these posts now with CheerMAD. They are some of the most real, raw, painful testimonials I have ever read. This is a longer blog than most, but I hope you read it all for some perspective, and from the bottom of my heart, I hope this post is read in its entirety by those who are able to help in some way.
On his Facebook page late last night
(May 23, 2016), Jeff wrote:
We met today with the team at MGH and talked about securing a home hospice agency to help us manage at home. We are trying to wrap our heads around this subject. Does this mean we are giving up? No! We will never give up, but our little girl must lead the way. She's becoming tired and we know that we can only push so much. This is about her and not us.
It's amazing that one little 7 year old can inspire so many people just by her smile. Ava is dying. My baby girl is dying and I cannot do anything to help her. I'm supposed to be her protector, her rock, yet I watch helplessly as this monster destroys her little by little. I will never be the same, but I will never give up the fight that our children deserve more funding, more research and better treatment options. I will work tirelessly to defeat cancer with every fiber in my being and I will make everyone aware that Ava and our many other special friends who have been taken from us are remembered for their fight and for their unwavering bravery to smile when they could've very easily given up.
As we head home (Tuesday) we know that the next months to come will be tough. We do not know what will happen and we have not been told to expect "this or that". We plan to cherish the present as we always have. The MRI on June 6th will give us a better idea as to if the radiation and chemo is giving us more time or if we should stop.
Please hug your children tight. Don't worry about the small stuff. The dishes, the laundry, the landscaping... It can wait. Do what you want, take trips, make memories and don't wait... Don't wait! As you look at this picture (left) despite everything she smiles. It's profound and its chilling to the bone.
Much love to you all. 💗
May 22, 2016
Michael Doiron’s Facebook post:
Dear CANCER: I hate you with all my being. I am forced to watch as you slowly take little bits of her as you yourself fight to live.
We fought you the first time when she was only five years old. You stole her right-sided strength along with her innocence when you set up home in the left side of her brain. (Photo left, Tumor No. 1, January 2014)
We fought you hard and we had hoped we had somehow won, but all the while you laid in wait for over a year and a half. Surprisingly you returned in a different location (Photo below, Tumor No. 2, December 2015) .You had also mutated to be even stronger and more aggressive! As the news of your return slowly surfaced as the MRI images loaded on the screen, it seemed we were going to be forced to concede failure. You had won!
As the following days showed us some of your weakness we vowed to take you on once again. This time you stole some connections needed for memory, speech and word retrieval. As you got angry you made her angry!
But we knew that wasn't her when she was hitting us, or when she was screaming at us. That was you at the wheel, voicing your rage as we hit you hard!
Out of spite and determination to survive you found yet a third way to return! Stronger and even more aggressive you found homes in her cerebellum and spine. The largest tumor having grown from nothing to an oversized blueberry in four weeks meant the latest round would certainly be our last.
(Pictured below left , is tumor circled and two smaller tumors under it; picture below right, are three tumors on spine. April 2016).
Tumors in five locations meant surgery to remove you wasn't an option. So far you've taken her balance and leave her on a roller coaster ride of motion sickness. We fight and we fight, yet you seem unfazed. Your arrogance is repugnant. I look into your smug eyes and I beg for just one more day as long as there is still quality of life. And tomorrow I will beg yet again!
As you try and you try to survive so do we!
As you grow and try to expand you rob me of the experiences that every parent hopes for their kids to have. You slowly retract from a future that should be guaranteed.
Milestones that will never be!
You keep forcing us to shift our hopes and dreams, replacing them with greater amounts of reality and fear.
Slowly you grab hold of our future and you keep it close. Holding it hostage along with our optimism, all while forcing your version of reality down our throats!
As cunning and intelligent as you appear to be at first glance, you are, in fact, blind to your own self-destruction.
If only I could get you to understand that you and she could both exist together. If you stayed the same size you could remain present and we could keep what we have.
We could make a deal! You can keep what real estate you have already stolen, you can continue to rob her blood of oxygen and nutrients, but just keep yourself from growing and expanding into areas she needs to remain herself.
I warn you though, don't be greedy! Greed can never serve you well, for in the end if you win the battle you will still lose because without her you will also fail to exist! Then really, who has won?
The answer is absolutely NO ONE.
I want you to know that I am grateful for every day you give me with her and for the realization that every day is valuable and should never be taken for granted.
Michael Doiroin and Jeff Frankland with daughters Ella, (left) 5, and Ava, 7, Christmas 2015
Some people say you don't know what you have until it's gone. I maintain I know what I had the whole time, but I had no idea you would try and steal it from me!
I suppose I am indebted in a way because you could have taken her for me long ago, but instead you've left us with a version of her I can still recognize. I can still see her in there, though lost at times. Although she will always be different than her original self she is still a far better version than you have given others. That is, however, where my gratitude ends and my role as an angry father supersedes all else!
I want you to also know we will battle you with everything we have. You made us angry and we are making you angry! Fighting us is not the solution. Please, Please, Please see that no matter what, in the end, you will lose even the battles you think you are winning.
I ask for you to just spare the children and please realize I will continue to fight you and all of your friends for as long as my heart beats.
Additionally, all of Ava’s Army will continue to march on no matter who the winner of this battle proves to be.
We will eventually find a way to defeat you while protecting and retaining the innocence of our youth.
For more information about Ava’s Army:
Again, any financial help is greatly appreciated:
MAY 18, 2016
Michael Doiron’s Facebook post:
I'm sorry this is long but so incredibly important! Everyone has been asking if there is anything that they can do or that we need and for the most part we keep saying we are doing ok and then they say well if you need anything all we need to do is ask...
I want to take a moment and open up and share with you a very personal and internal struggle that I've/We've been having for the past month!
You see, we've been very open for the most part with many of the struggles associated with pediatric cancer but there are still several topics that we've kept close for various reasons! We've promised or maybe even warned that in an effort to raise awareness during “Go Gray in May” we would open up on a greater level.
Inherently most would say that topics of politics, religion and money should remain in the private arena.
While we generally agree with this rule we also now believe that because cancer has no rules then these rules are thrown out the window along with our pride! Through creating transparency we hope we can help create awareness and thus harnessing the power found in the many to help continue the battles so many families are facing!
I want to start by thanking all the members of Ava’s Army for all the love and support you've shown us over the past two years and four months! We 100% would not have gotten to this point without the sacrifices you've made to help us along the way. We always have been and we will always be truly grateful! This is why what we are going to throw out there is so difficult for us to share. How can we ask for more when we've already been given so much?
For you see, it isn't an easy thing to extinguish one’s pride but trust me there is no greater leveler than cancer. When it comes to accepting help many of us will smile and say we're doing ok and thank you anyways! Words of truth: families that say this are either feeling guilty, lying or in all out denial of their needs! That is unless we/they are forced to accept because of circumstances in that moment!
Now, when it comes to actively asking for help and truly showing our vulnerability most of us would continue to remain silent. Only asking the people that truly force their way into our lives not accepting our forced smile and standardized responses! Otherwise we will continue holding the truth up until the point that by remaining silent we actually begin to affect our children's: health, well being or joy!
So sitting here now sharing with you in a very vulnerable and raw way I am saying I honestly would be willing to give up every solitary possession we have! I would equally give up my own life if it meant that Jeff and the girls could live long healthy lives themselves. But we all know those bargains can't come to fruition as every child would be spared by the bartering of countless parents! Trust me I've tried speaking to the owners of heaven and hell but I had to leave a message every time I've tried over the past two plus years and still I am left with no response. So as crazy as that sounds what are we left with then?
Sitting here still unable to sleep after two sleeping pills at 5am as I watch the sun rise all I have is the truth! I'm feeling like a failure to my family! Like I've let them down in some way by not being able to be superman! Everyone says we are so strong yet in reality I feel so incredibly weak! Sitting here feeling helpless I look internally and find there is nothing left. During these times I try to look to Ava and draw strength from her unwavering bravery so I choose to continue sharing here for you now...
It's common knowledge that I've been the primary bread winner and Jeff has been the primary caretaker. Both equally important roles and both having pro's and con's. Like most bread winners I've historically found self value in my ability to provide for my family while I've also held guilt that I missed out on parts of our families experiences. I've always justified my hard work and time aw