Friday, January 13, 2012

When life throws you a curve ball.


Back in the first week of December our life was turned upside down.
It is amazing how one phone call changes everything.
With respect to my family and their privacy, I can tell you this much, my mother in law was diagnosed with a brain tumor that night.
She had it successfully removed.
We were blessed to learn it was not cancer.
But we have the long rode of recovery ahead of us.

During those first crazy weeks, I found out about a friend from high school and her recent curve ball.
Here is Ethan's story written by his Momma, Melissa.

Ethan was born January 6, 2009. 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.

We went to meet with Ethan's oncologist on January 5th and were informed that we would need to be admitted into Tampa General Hospital for a 4-10 day stay so that they could install Ethan's port and test to see if the disease was present anywhere else in his body. During our stay at TGH Ethan had an MRI, CT of his head, chest and abdomen, bone marrow extraction, X-rays of ALL of his bones, a spinal tap, his port was installed and he was tested for diabetes insipidus. This particular type of diabetes is common in children that have LCH. At this time we have gotten all but the spinal fluid test back and they all have been negative. This is WONDERFUL news!! Ethan starts chemo today 1/12/12 and we should get to go home tomorrow!! Ethan has been a trooper through all of this. Definitely stronger than I would be.

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. My husband 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 people can provide.

I know Ethan is not the only child fighting a deadly disease and I know the Haas family is not the only one in need right now.
But helping them could make the difference for a complete recovery and clean bill of health for Ethan.
Melissa has setup a GoFundMe page for Ethan.
Its an easy way to give this sweet little boy a cancer- free future .
If you can't donate, spreading the word would also be amazing way to bless this family with your generosity.
The page is a great way to stay updated on Ethan progress.
So please take a moment for Ethan.

**UPDATE: The Haas Family was told today that chemo will be a year long, not the 6 weeks they originally thought.**


3 comments:

Lauren K said...

My thoughts and prayers are with this family. Please let them know that they are not alone. There are tons of people who will surround them with love and support. If I may be so bold as to direct them to www.THON.org as Penn Sate students are getting ready to stand for 46 hrs to help raise money for pediatric cancer research. It happens every year and in 2007 I danced. Pediatric cancer is a cause close to my heart though I have never known it myself or directly. I will do what I can and spread the word! Sending positive thoughts to Ethan and his family!!

Hespyhesp said...

I don't really have a following on my blog, but I'd love permission to repost. Hopefully by at least spreading the word to my friends and family it will keep going...

My prayers are with this family. It hits so close to home when your child is so close in age. I cannot imagine going through this since I can't even read it without crying myself.

facial surgery said...

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