Help Ethan fight LCH and get through chemo

$21,750 of $30k goal

Raised by 303 people in 60 months
Melissa Robinson Haas  WESLEY CHAPEL, FL
Ethan was born on January 6, 2009. On November 29,2011, a few weeks before Ethan was to turn 3 years old, our world was turned upside down. After multiple visits to the pediatrician for a puffy eye, we were sent to St. Joseph's Children's Hospital for an MRI that revealed a tumor above Ethan's left eye. Following this discovery, we consulted with the cranial-facial plastic surgeon who would eventually remove the tumor. He ordered a CT Scan for Ethan so that he could get a better idea of how involved the tumor was with Ethan's skull, eye, and brain. Due to the location of the tumor, it was determined that we would need a neurosurgeon in addition to the plastic surgeon; we also realized that due to the proximity to the brain and eye, we could not biopsy the tumor prior to surgery, which lead to wide speculation of a diagnosis. From the realization that surgery was a necessity, the plastic surgeon wanted to schedule the operation ASAP in order to protect Ethan's eye. Unfortunately, due to hospital politics, he was unable to schedule the surgery with a neurosurgeon that he was comfortable working with, so we were referred to the University of Miami. On December 6, we arrived in Miami. We stayed in Miami for 5 days and consulted with multiple doctors and ran more tests. Following more speculation, surgery was scheduled in Miami for December 30, 2011; it could not be scheduled sooner because the neurosurgeon was going on vacation for Christmas. In the mean time, our doctor in Tampa was still working around the clock and calling in favors in order to schedule the surgery in Tampa sooner than December 30 as he did not want to risk allowing the tumor to jeopardize Ethan's eye. We were sent home to wait until the end of the month and told to "enjoy the holidays." It seemed that the roller-coaster was never going to end. On December 16, we got a call that our doctor in Tampa, after exhausting all of his favors, was able to schedule Ethan's surgery in Tampa for December 22, 2011.

The surgery was a success and the tumor was completely removed. Ethan was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare cancer-like disease that affects 1:200,000 children. While the diagnosis could be worse, this is still a serious disease with no government funding available for researching a cure. Ethan will be starting chemo during the first or second week of January, possibly on his 3rd birthday, and the next six months will be difficult as we begin the journey of beating this disease.

On September 27, 2011, our family was blessed with the addition of Liam, Ethan's younger brother. Melissa and I have used all of our available sick time through June 2012 with the leave that we took following Liam's arrival, making it difficult for us to be off of work. However, Ethan needs us around as much as possible, especially Mommy, over the next 6-8 weeks during his first round of chemo and during any future treatments. We are trying to raise money that will help with the costs of Ethan's care so that we can keep our focus on keeping his spirits up and beating this disease. Asking for and accepting help has been one of the most difficult things that we have done, but we need any and all help that you can provide. Anything helps and please repost this page wherever you think may help. We truly appreciate any and all support. Please keep Ethan and our family in your prayers as we begin our battle. Any money raised that is not used in costs associated with Ethan's treatment will be donated to help educate and/or research LCH.
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Update 34
Posted by Melissa and Brandon Haas
56 months ago
Ethan crossing the finish line of his 1K race for Be The Match
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Update 33
Posted by Melissa and Brandon Haas
56 months ago
Today is a very difficult day for me. It marks 2 years since my dad passed away and I'm sitting in the hospital with Ethan while he gets his 14th chemo treatment. Not exactly the path I'd imagined I'd be on 2 years ago.

However, Ethan is doing wonderful and I am so grateful for that!! His spirits are high and we haven't had any more issues with his blood counts being low either. He is an all around happy 3 year old. I like to think that my dad is watching over him and is his guardian angle.

Last Sunday, 101 days after his craniotomy and reconstruction and 2 days after his 13th chemo treatment, Ethan ran in a 1K to support Be The Match, a national bone marrow registry. He ran almost the entire way and had a fantastic time. He is so inspirational and refuses to let anything slow him down. I had tears in my eyes as I watched him cross the finish line.

Only 3 more chemo treatments left and then we are on to maintenance!! I can finally see a light at the end of the tunnel. A big thank you to everyone for all of your continued support.
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Update 32
Posted by Melissa and Brandon Haas
57 months ago
Just wanted to share a preview of some wonderful "Thank You" photos we had taken. I'm hoping to send a thank you card to everyone that has helped us during this journey.
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Update 31
Posted by Melissa and Brandon Haas
57 months ago
Ethan tolerated his blood transfusion last week very well. He seems to be feeling great and I haven't received any calls from his doctors so I assume his blood levels are back in the normal range. He had lab work done again today and is such a brave boy. He doesn't even cry when they take blood anymore!!

Unfortunately our chemo vacation is coming to an end this Friday. He starts his second 6 week round of weekly treatments. He also has to go back on the prednisone. It has been nice not having to give him all the meds or go to the hospital on Fridays. We can make it through, 6 weeks and he will hopefully be on to the maintenance phase of treatment. He won't however be completely finished with chemo until January 2013. It's hard to believe that he will have been on chemo treatments for his entire third year of life.

He is doing amazingly well. He still hasn't lost any hair and isn't getting sick either. He is continuing to be my little Super Ethan.
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 619 total shares
Rosie Elmslie
19 months ago

This is great I was diagnosed with lch when I was 1 years old the lch destroyed my liver and had a transplant in 2006 I can't bear to think about how you all felt. As it is such a rare disease no one knows about and took my mum 6 months before they even looked into it I happy to hear he is getting treated if you would like to contact me please do

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Shirley Guinn
57 months ago

Ethan is a special little boy as are his parents. Prayers still going up daily

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Shirley Guinn
57 months ago

Great news. Prayers still ongoing.

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Shirley Guinn
58 months ago

Continually praying for all of you.

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Beth Ameen
58 months ago

Yayyy, That is great news! It's amazing how these little kiddos can be so incredibly resilient. They really teach us all so much about life. Continued positive thoughts and prayers :-)

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Bryan Robinson
59 months ago

Sometimes they can flavor meds in suspension so the prednisone won't taste icky.

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Tara Cohee Adams
59 months ago

So happy that you are finally seeing the light at the end of the tunnel.

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Shirley Taylor Guinn
59 months ago

Lots of prayers going up for Ethan and family. Thank you for keeping us informed.

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Abby Murphy
59 months ago

Thinking of the Haas family today as Ethan starts more tests. Thoughts and prayers with you!

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Leigh Friend Gresham
59 months ago

Sending prayers and positive thoughts your way as you go through the new tests. Stay strong!

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Andrew Ford
59 months ago

ill pray for you and your family Mr.Haas, stay strong.

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Shirley Taylor Guinn
59 months ago

I pray that he will have the Lord's comfort as he is undergoing these new tests. I pray for all the family at this time to know that they are loved and cared about.

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Julie Johnson Doyle
59 months ago

Keeping you all in our prayers<3 Love, The Doyle Family

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Melissa Sanchez
59 months ago

Hang in there!!! (HUGS) He looks like a fighter!! :)

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Shirley Taylor Guinn
59 months ago

I pray that Ethan's progress will be ongoing with no setbacks and that he will keep his wonderful personality thru this. Praying for all the family daily.

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Stefanie Phillips
59 months ago

I am really touched by Ethan's story. Vicky Moore is my cousin (Dane Moore's mom) and she shared your story with me. My sons are 4 1/2 and 1 1/2 and I just can't imagine what you are going through. I LOVE the video of him singing Mr. Sun. I will pray for your family and provide a small donation. I'm glad the surgery went well and hope for the best during Chemo. Stay strong, you sound like wonderful parents doing all the right things for your baby :)

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Robin Altenberger
59 months ago

Ethan & family, I was a friend and neighbor of the Holman family when Pam, Teresa & I were younger. I totally understand what you are going through at this time. My youngest grandson was born with HYPOPLASTIC LEFT HEART SYNDROME. The left side of his heart was underdeveloped. He has had 2 surgeries so far and will need one more after he turns 2 in March 2012. He is doing well at this time. It is so hard to watch someone you love so much go through something like this. My prayers will continue for the entire family. Keep the faith for positive results. God Bless you all, Robin Altenberger

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Tammy Folsom
59 months ago

Please know Ethan and the entire Haas family are in our prayers! Tammy (Grant)

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$21,750 of $30k goal

Raised by 303 people in 60 months
Created December 30, 2011
Melissa Robinson Haas  
$25
John Randazzo
40 months ago

I can truly imagine what you as a family are going through as we are... I read Ethan's story and was compelled to help with a small token of us to you... We'll be praying for Ethan and your family.

EF
$100
East Bay Girls Flag Football
55 months ago
$50
Anonymous
55 months ago
J
$30
Jagadish
56 months ago

God bless you, dear

$200
Anonymous
57 months ago
$35
Anonymous
57 months ago
LF
$25
Lennox Family
57 months ago

God Bless you guys!

$600
Anonymous
58 months ago
AW
$50
Amber Wright
58 months ago

Haas family, my thoughts and prayers are with you daily.

MO
$50
Mike & Stephany O'Donnell
58 months ago
Rosie Elmslie
19 months ago

This is great I was diagnosed with lch when I was 1 years old the lch destroyed my liver and had a transplant in 2006 I can't bear to think about how you all felt. As it is such a rare disease no one knows about and took my mum 6 months before they even looked into it I happy to hear he is getting treated if you would like to contact me please do

+ Read More
Shirley Guinn
57 months ago

Ethan is a special little boy as are his parents. Prayers still going up daily

+ Read More
Shirley Guinn
57 months ago

Great news. Prayers still ongoing.

+ Read More
Shirley Guinn
58 months ago

Continually praying for all of you.

+ Read More
Beth Ameen
58 months ago

Yayyy, That is great news! It's amazing how these little kiddos can be so incredibly resilient. They really teach us all so much about life. Continued positive thoughts and prayers :-)

+ Read More
Bryan Robinson
59 months ago

Sometimes they can flavor meds in suspension so the prednisone won't taste icky.

+ Read More
Tara Cohee Adams
59 months ago

So happy that you are finally seeing the light at the end of the tunnel.

+ Read More
Shirley Taylor Guinn
59 months ago

Lots of prayers going up for Ethan and family. Thank you for keeping us informed.

+ Read More
Abby Murphy
59 months ago

Thinking of the Haas family today as Ethan starts more tests. Thoughts and prayers with you!

+ Read More
Leigh Friend Gresham
59 months ago

Sending prayers and positive thoughts your way as you go through the new tests. Stay strong!

+ Read More
Andrew Ford
59 months ago

ill pray for you and your family Mr.Haas, stay strong.

+ Read More
Shirley Taylor Guinn
59 months ago

I pray that he will have the Lord's comfort as he is undergoing these new tests. I pray for all the family at this time to know that they are loved and cared about.

+ Read More
Julie Johnson Doyle
59 months ago

Keeping you all in our prayers<3 Love, The Doyle Family

+ Read More
Melissa Sanchez
59 months ago

Hang in there!!! (HUGS) He looks like a fighter!! :)

+ Read More
Shirley Taylor Guinn
59 months ago

I pray that Ethan's progress will be ongoing with no setbacks and that he will keep his wonderful personality thru this. Praying for all the family daily.

+ Read More
Stefanie Phillips
59 months ago

I am really touched by Ethan's story. Vicky Moore is my cousin (Dane Moore's mom) and she shared your story with me. My sons are 4 1/2 and 1 1/2 and I just can't imagine what you are going through. I LOVE the video of him singing Mr. Sun. I will pray for your family and provide a small donation. I'm glad the surgery went well and hope for the best during Chemo. Stay strong, you sound like wonderful parents doing all the right things for your baby :)

+ Read More
Robin Altenberger
59 months ago

Ethan & family, I was a friend and neighbor of the Holman family when Pam, Teresa & I were younger. I totally understand what you are going through at this time. My youngest grandson was born with HYPOPLASTIC LEFT HEART SYNDROME. The left side of his heart was underdeveloped. He has had 2 surgeries so far and will need one more after he turns 2 in March 2012. He is doing well at this time. It is so hard to watch someone you love so much go through something like this. My prayers will continue for the entire family. Keep the faith for positive results. God Bless you all, Robin Altenberger

+ Read More
Tammy Folsom
59 months ago

Please know Ethan and the entire Haas family are in our prayers! Tammy (Grant)

+ Read More
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