Save Sweet Amelia - Fight AML!
Donation protected
This a marathon - not a print.
And it's still going on.
- 6 months of Aggressive Chemo starting at age 2.
-Bone Marrow Transplant at age 3 (for cost of $475,000)
-Half your little life wearing a mask by her current age (6).
-40-60% of 5 year survival (to age 8)
And yet this sweet Amelia keeps beating the odds and not just surviving - thriving.
This is her story. Her brave story. Her story of strength and determination.
___________________________________
When she overheard me on the phone talking about the medical bills she said, "I would give you money to pay them if I could Mummy, but I couldn't since I was busy in the hospital."
And she would too - She would give the coat off her back for a stranger.
_________________________________
There are still hundreds of thousands of dollars of medical bills to be paid.
Her family alone has already paid out more than $1.4M in medical bills -- excluding the millions already paid by insurance.
And while most people like to give right away, which is so much appreciated, the journey continues.
THANK YOU THANK YOU THANK YOU to all who have given so generously the past 4 years.
For those who haven't, please know that there are still more medical bills -- both prior ones that have been disputed and current ones to be paid.
Anything you contribute will go directly to her medical care- both bills for past treatment not covered by insurance and her continued care (including regular PT and OT and other specialists, including visual discimination work to help her with her eyes.)
_______________________________
HER STORY:
Amelia's journey began back in April 2016 when she was 23 months old. From the local ER she was sent by ambulance to Mass General Hospital in Boston for what was believed at the time to be an unknown virus that caused bone marrow failure. We now know that was the start of leukemia or pre-leukemia.
6 months later in October 2016 the bone marrow aspiration and biopsy confirmed it. Amelia was diagnosed with acute myeloid leukemia.
Acute Myeloid Leukemia (AML)
While AML is a common type of leukemia in adults, it is rare in children-
Only about 500 children a year get AML.
It wasn't just any kind of AML however. She woke up from her nap with reddish blue bruising on one eyelid. By the time we reached MassGeneral Hospital, both eyes were swelling, and she had subconjunctival hemorrhaging in both eyes from low blood counts. Something was infiltrating her eye. A tumor had grown rapidly in Amelia's left eye causing blurred vision. The tumor also completely changed the color of Amelia's left eye from blue to copper.
A split second decision was needed by Amelia's mom --Immediate chemotherapy was needed so that Amelia did not lose full sight in her left eye.
The subtype she has is MML rearrangement which studies show only 6-8% of all AML patients have.
RARE CONDITION- LESS THAN ONE IN A MILLION CHANCE
The specialists at Mass General have confirmed this is a very rare situation (1-2% likelihood). It is not environmental or anything she ate. Her hematologist confirmed it was bad luck.
The chance of this diagnosis - with leukemia in her eye- is less than one in a million.
Amelia's doctors have reaching out to experts throughout the country and while there are some 12+ isolated cases known, that's it. The reality is that there has been little is know about such a rare case. And what is known about such eye involvement is quite dismal.
The good news -
We do know is that chemotherapy worked to shrunk and rid her of the tumor in her left eye has returned to its original color. She can now see in her left eye which is such a blessing!
Amelia had 3 rounds of chemo at MassGeneral (5 months of extensive chemo, involving 3 chemo drugs each treatment) over the course of 5 months in 2016-2017.
During each round of chemo, Amelia had no defense against bacterial infections (severe neutropenia) and has been in a pressurized room behind double doors at the hospital.
She then went on to Children's/Dana Farber for a bone marrow transplant from an anonymous donor in 2017.
Thankfully her body did accept the bone marrow transplant.
But not without immediate concerns. A monthafter the transplant, she had severe mucusitis of the gut, which caused two types of infections in her gut and needed emergency surgery to remove her central line (Broviac). The infection spread throughout her body. Thankfully two types of antibiotics were used by Dana Farber doctors to save her life.
Amelia fought hard every day. She kept walking and dancing and moving to keep her little body strong. We laughed and we prayed and we made the best of every day.
This then followed with one year of complete isolation and a second year of partial isolation as her immune system wasn't stronger until 2 years post transplant. During this time Amelia's mom had to stop work to continue to care for her daughter.
She has been through 63+ blood transfusions, multiple surgeries and tests/ procedures, and continues to need regular PT and OT and other services -- both in school and through the hospitals.
While the immediate risk is thankfully behind us at the moment, the bills are not.
And the need for continued services and monitor and work on long term concerns/risk are still there.
Throughout this, Amelia is her same happy spirited self, laughing and dancing and playing with her baby dolls over the past 4 years.
One of the hematologists on the floor noted that Amelia is the "happiest person on the floor" at the hospital and quite possibly the happiest person he has ever met.
The reality is that this smart, funny, beautiful little girl who has melted the hearts of the nurses and doctors at Mass General , Children's, Dana Farber, and MassEye and Ear has a very real fight - and she needs your continued help and support.
The goal is to get Amelia to 8 years old. (If she can make it to that age she has an excellent chance of staying in remission!)
This continues to be not a short-term project. This is a marathon - not a sprint - and we need your help.
Our world has been turned upside down. The anguish and fear of a baby diagnosed with cancer is unimaginable. On top of the emotional distress, the financial burden of cancer is overwhelming.
There are few financial aides for Amelia's type of leukemia. We are doing all we can, but we need your help. Amelia's mom is self-employed and the sole financial supporter of Amelia; she has had to stop work to be there at the hospital and meet with the doctors and advocate for Amelia.
Amelia's mom has excellent health insurance (private pay), but even that won't cover all the costs. And secondary insurance has been denied at this time. (To put it in perspective, every week for Amelia is about $114,000.)
And it is not enough.
Please, it could be your child, your niece, your goddaughter, your grandchild...who in an instant, is fighting for his or her life. Help us fight for Amelia with whatever contribution you can make. It will be a long battle---but Amelia is a spiritual and spirited little girl.
Your thoughts and prayers and whatever financial support you can give will be greatly appreciated. With your help, we won't stop fighting for Amelia.
As the hematologist said this week. "You go girl! You show 'em how it"s done!"
Go Miss Amelia - stay strong my friend! You are a fabulous little girl. You can beat the odds and beat AML!
Donation Note: Due to GoFundMe charging 8% fees, Amelia would benefit most from a direct donation. If you are able to donate offline or via paypal, any amount sent will be added to the totals here.
Direct donations via paypal can be made to:
[email redacted]
OR
Direct Donations can be made via mail to her mother, Amy Chick, and sent to:
Amy Chick
c/o Battle Road Financial & Consulting Group
336 Baker Avenue, Unit 1-10
Concord, MA 01742
Note: Please consider helping - whether you can give $5, $50, $500, or $5000... it will all add up and make a HUGE difference to this beautiful little girl.
And whether you can help financially or not, please share this post and help us get the word out! Thank you for your support!
And it's still going on.
- 6 months of Aggressive Chemo starting at age 2.
-Bone Marrow Transplant at age 3 (for cost of $475,000)
-Half your little life wearing a mask by her current age (6).
-40-60% of 5 year survival (to age 8)
And yet this sweet Amelia keeps beating the odds and not just surviving - thriving.
This is her story. Her brave story. Her story of strength and determination.
___________________________________
When she overheard me on the phone talking about the medical bills she said, "I would give you money to pay them if I could Mummy, but I couldn't since I was busy in the hospital."
And she would too - She would give the coat off her back for a stranger.
_________________________________
There are still hundreds of thousands of dollars of medical bills to be paid.
Her family alone has already paid out more than $1.4M in medical bills -- excluding the millions already paid by insurance.
And while most people like to give right away, which is so much appreciated, the journey continues.
THANK YOU THANK YOU THANK YOU to all who have given so generously the past 4 years.
For those who haven't, please know that there are still more medical bills -- both prior ones that have been disputed and current ones to be paid.
Anything you contribute will go directly to her medical care- both bills for past treatment not covered by insurance and her continued care (including regular PT and OT and other specialists, including visual discimination work to help her with her eyes.)
_______________________________
HER STORY:
Amelia's journey began back in April 2016 when she was 23 months old. From the local ER she was sent by ambulance to Mass General Hospital in Boston for what was believed at the time to be an unknown virus that caused bone marrow failure. We now know that was the start of leukemia or pre-leukemia.
6 months later in October 2016 the bone marrow aspiration and biopsy confirmed it. Amelia was diagnosed with acute myeloid leukemia.
Acute Myeloid Leukemia (AML)
While AML is a common type of leukemia in adults, it is rare in children-
Only about 500 children a year get AML.
It wasn't just any kind of AML however. She woke up from her nap with reddish blue bruising on one eyelid. By the time we reached MassGeneral Hospital, both eyes were swelling, and she had subconjunctival hemorrhaging in both eyes from low blood counts. Something was infiltrating her eye. A tumor had grown rapidly in Amelia's left eye causing blurred vision. The tumor also completely changed the color of Amelia's left eye from blue to copper.
A split second decision was needed by Amelia's mom --Immediate chemotherapy was needed so that Amelia did not lose full sight in her left eye.
The subtype she has is MML rearrangement which studies show only 6-8% of all AML patients have.
RARE CONDITION- LESS THAN ONE IN A MILLION CHANCE
The specialists at Mass General have confirmed this is a very rare situation (1-2% likelihood). It is not environmental or anything she ate. Her hematologist confirmed it was bad luck.
The chance of this diagnosis - with leukemia in her eye- is less than one in a million.
Amelia's doctors have reaching out to experts throughout the country and while there are some 12+ isolated cases known, that's it. The reality is that there has been little is know about such a rare case. And what is known about such eye involvement is quite dismal.
The good news -
We do know is that chemotherapy worked to shrunk and rid her of the tumor in her left eye has returned to its original color. She can now see in her left eye which is such a blessing!
Amelia had 3 rounds of chemo at MassGeneral (5 months of extensive chemo, involving 3 chemo drugs each treatment) over the course of 5 months in 2016-2017.
During each round of chemo, Amelia had no defense against bacterial infections (severe neutropenia) and has been in a pressurized room behind double doors at the hospital.
She then went on to Children's/Dana Farber for a bone marrow transplant from an anonymous donor in 2017.
Thankfully her body did accept the bone marrow transplant.
But not without immediate concerns. A monthafter the transplant, she had severe mucusitis of the gut, which caused two types of infections in her gut and needed emergency surgery to remove her central line (Broviac). The infection spread throughout her body. Thankfully two types of antibiotics were used by Dana Farber doctors to save her life.
Amelia fought hard every day. She kept walking and dancing and moving to keep her little body strong. We laughed and we prayed and we made the best of every day.
This then followed with one year of complete isolation and a second year of partial isolation as her immune system wasn't stronger until 2 years post transplant. During this time Amelia's mom had to stop work to continue to care for her daughter.
She has been through 63+ blood transfusions, multiple surgeries and tests/ procedures, and continues to need regular PT and OT and other services -- both in school and through the hospitals.
While the immediate risk is thankfully behind us at the moment, the bills are not.
And the need for continued services and monitor and work on long term concerns/risk are still there.
Throughout this, Amelia is her same happy spirited self, laughing and dancing and playing with her baby dolls over the past 4 years.
One of the hematologists on the floor noted that Amelia is the "happiest person on the floor" at the hospital and quite possibly the happiest person he has ever met.
The reality is that this smart, funny, beautiful little girl who has melted the hearts of the nurses and doctors at Mass General , Children's, Dana Farber, and MassEye and Ear has a very real fight - and she needs your continued help and support.
The goal is to get Amelia to 8 years old. (If she can make it to that age she has an excellent chance of staying in remission!)
This continues to be not a short-term project. This is a marathon - not a sprint - and we need your help.
Our world has been turned upside down. The anguish and fear of a baby diagnosed with cancer is unimaginable. On top of the emotional distress, the financial burden of cancer is overwhelming.
There are few financial aides for Amelia's type of leukemia. We are doing all we can, but we need your help. Amelia's mom is self-employed and the sole financial supporter of Amelia; she has had to stop work to be there at the hospital and meet with the doctors and advocate for Amelia.
Amelia's mom has excellent health insurance (private pay), but even that won't cover all the costs. And secondary insurance has been denied at this time. (To put it in perspective, every week for Amelia is about $114,000.)
And it is not enough.
Please, it could be your child, your niece, your goddaughter, your grandchild...who in an instant, is fighting for his or her life. Help us fight for Amelia with whatever contribution you can make. It will be a long battle---but Amelia is a spiritual and spirited little girl.
Your thoughts and prayers and whatever financial support you can give will be greatly appreciated. With your help, we won't stop fighting for Amelia.
As the hematologist said this week. "You go girl! You show 'em how it"s done!"
Go Miss Amelia - stay strong my friend! You are a fabulous little girl. You can beat the odds and beat AML!
Donation Note: Due to GoFundMe charging 8% fees, Amelia would benefit most from a direct donation. If you are able to donate offline or via paypal, any amount sent will be added to the totals here.
Direct donations via paypal can be made to:
[email redacted]
OR
Direct Donations can be made via mail to her mother, Amy Chick, and sent to:
Amy Chick
c/o Battle Road Financial & Consulting Group
336 Baker Avenue, Unit 1-10
Concord, MA 01742
Note: Please consider helping - whether you can give $5, $50, $500, or $5000... it will all add up and make a HUGE difference to this beautiful little girl.
And whether you can help financially or not, please share this post and help us get the word out! Thank you for your support!
Organizer
Amy Standish Chick
Organizer
Boston, MA