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:
https://www.gofundme.com/zzdejn44
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 away because it allowed us to live comfortably and also allowed us to have experiences that brought joy to us all. More recently though, this struggle ramped up as I tried to balance work with the pressures of home and Ava's illness.
Less than two and a half years ago I was working 60-70 hours a week. Following Ava's first diagnosis I was out of work for six months and only returned to a normal 38 hours a week! Because I carried the benefits I more importantly needed to return to work to ensure Ava always received the best medical care! This cycle continued with another three months off following Ava's second diagnosis and a return to work in late Jan for my 38hr/week.
Well, On April 14, 2016 that self-value and sense of pride and purpose came crashing down around me as I found myself suddenly unemployed for the first time since I was 15 years old. I can't discuss specifics here other than to say it was not my choice and I was forced out by my previous employer into the unemployment line. For which I'm still waiting to see if I qualify.
In an instant I crashed and I crashed hard. It took days before the dust began to settle and I could begin to comprehend the repercussions this would have on us in general and then I once again felt shell shocked as I tried to wrap my head around what this truly meant for Ava's care!
In fact it's now been over four weeks since I received the news and I'm still coming to terms with the struggles facing us as we continue to leap countless hurdles in retaining continuity of care for Ava's 3rd round of cancer.
I have to say “Thank You Jeff” for your unwavering love and help to lift me up even though I feel as though I have failed us!
It's been so incredibly hard to digest the reality of what this latest recurrence/tumor means never mind adding all the rest of the stress and anxiety to this never ending, what we call our “New Normal.”
It's been a struggle to come to terms with my need to now ask for financial help in this very public setting! We've privately held onto the financial struggle for far too long. Afraid of what people would think. While we've been on the verge of economic crisis for at least the last six months, we've always been rescued by the generosity of someone or by some organization or group of people!
Whether it was an organization that paid our car payment, one of our utilities or one of our mortgages…
Whether it was the iron workers that paid for our trip to Disney…
Or the Central Catholic parent who bought us Rosie (service dog)…
Or the “Catwalk for Cancer” organizers who just paid our medical expenses including Cobra coverage for the month of May...
Whether it was the countless “Get well” and “Thinking of you cards” that came with gas or grocery gift cards, checks or cash…
Whether it came in the form of packages that held surprises for the girls to brighten
their day…
They all seemed to come at exactly the right and most needed of times!
Sitting here now in this moment I have to say Jeff and I have done everything we can. We've held it together and remained silent for as long as we can.
We certainly wish we could have made the Ava’s Army money stretch further. We wish we didn't have to use all the savings, use the girls’ college funds, sell some of our possessions or take out a loan against my 401k. We wish we didn't privately need to ask our parents and grandparents and friends to help rescue us from foreclosure twice before.
But, at the same token we have no regrets in any of those decisions as any money spent outside of our basic needs such as some of the fun things always brought with them the smiles and joy you see in our pictures! These moments have truly been priceless and I wouldn't exchange a single one for any amount of money!
So with all that said we freely gave up on the lifestyle we used to live over two years ago and we've now also given up on the idea of trying to meet all of our financial obligations of our past.
What we haven't given up on is the idea of what Ava’s Army can be. So far it's helped our family stay in our home and allowed our girls to experience life and continue to feel joy amongst the pain! What if we could get through our current crisis and then transform Ava’s Army into a foundation to help other families in their battle against cancer?
Without going into all the specifics our most basic financial needs right now aren't small. You might be shocked to hear our current monthly medical expenses average about $4,000 alone! Cobra just added $2,000 of that amount. Mortgages add another $3,600. Add in cars, utilities, insurances and basic needs and we are over $10,000/month in the blink of an eye!
We have met with a financial specialist, a banker and yes a bankruptcy Attorney. We never go into something blind. At this point we've given up on the idea that we will be able to meet all of our previous financial agreements and at the end of the day our reality points to bankruptcy but we are a few months away from that still. But in reality that's ok because as long as we can keep our mortgage, our cars and utilities current we will have our most basic needs met and we will be able to remain in our home and keep some continuity for the girls.
So with all that said and my guts laying on the floor next to my tears I ask for help in whatever capacity you are able?
Whether that is: -a financial contribution on our go fund me page. -a gift card or check mailed to the house. -offering your time to help around the house or yard. -hosting a fundraiser. -offering legal help in finalizing “Ava’s Army” as a non-profit. -reaching out to an employer or business to share our story and giving them our contact info. -helping load pics and info into our new “Ava’s Army” web-site soon to be launched using Wordpress. -helping with a family photo shoot. -coming to read to the girls, doing a craft, playing with Ella while Ava sleeps, or even just sitting with Ava while she plays on her I-pad and ignores you. -Or simply helping by sharing this post with your family and friends.
Then from the bottom of our hearts: We Thank You! We Thank You! We Thank You!
Email mdpharm@gmail.com with any correspondence regarding financial aspects of this post.
Any mail can be sent to:
Ava’s Army 13 Hawk Dr. Salem NH 03079
Also the Go Fund me can be found on Ava’s Army Page:
Or directly here: