"Our 7 year old son Ethan was diagnosed with Stage IV Alveolar Rhabdomyosarcoma (ARMS) on August 6th, 2009. He had no symptoms of until we started to see a little lump on his chest near his left breast (it was his tumor bulging out). He complained of some pain so his doctor ordered an ultra sound. During his ultra sound we could tell something was wrong from the look on the technician’s face. That evening we were called by our doctor with the news that Ethan had a large mass the size of a softball in his chest.
August 1st, 2009 we were admitted to Doernbechers Children's Hospital in Portland, Oregon. After biopsies, several tests and agonizing days of waiting Ethan was dx with ARMS Stage IV. He had a large tumor wrapped around his heart collapsing his left lung airway, another large tumor in his abdomen that went through his diaphragm pressing against his liver and stomach, and cancer in his lymph nodes.
Ethan received his treatment between Portland, Oregon and where we live in Medford, Oregon. Ethan received 6 weeks of radiation in Manhattan, New York between Jan 2010-Feb 2010. We decided to travel to New York because of Dr. Wexler at Memorial Sloan Kettering. He specializes in the type of cancer Ethan has and we know how CRUCIAL of a part that radiation was in his treatment especially because we did not do surgery.
Ethan received 7 toxic chemos throughout his treatment. Finally Sept 21st, 2010 Ethan finished his intense chemo plan. But the statistics of relapse for ARMS was haunting the family.
Keeping this is mind we fought for Ethan to get on a maintenance plan. Since the maintenance plan was not an option at Doernbechers, we switched to Dr. Wexler in New York. Luckily he agreed to oversee Ethan's treatment from New York and work with their local Pediatric doctor at home. He approved to put Ethan on a maintenance plan that started in Nov 2010. Ethan was taken off his plan in Jan 2011 because he got the BK virus. His brain swelled, he was peeing blood for weeks, had horrible bladder spasms, and constant pain. Ethan was flown to New York where he spent 3 weeks in Feb 2011 at the Ronald McDonald House in New York so he could be treated by Dr. Wexler.
It has taken almost 2 months for his urine to come back completely clear with no BK virus and finally on April 1st we received the news that there are no BK cells in his urine. He also had scans on April 7th that were CLEAR!!! Now the plan was to get him back on his maintenance plan.
Ethan started having some pain in his side and in his legs. Scans were performed in Medford that showed no indication of cancer. We were left to wonder whether it was a side effect of the various treatment Ethan had been receiving or if he had actual relapsed. Over time the pain was getting worse and when discussed with Dr. Wexler we were advised to fly to New York once again. On June 21st, we received the most devastating news parents could receive, Ethan has relapsed and the cancer was EVERYWHERE. It was in the bones of his his legs, pelvic bones, sacrum, spine area and ribs. He started his new chemotherapy treatment, Irinotecan and Temodar on June 23rd. After two weeks of treatment, we received more devastating news…the chemo is not working. At that point, Dr. Wexler put Ethan on palliative care and we flew back home to see if there were clinical trial options available at Doernbechers.
Once at Doernbechers, Ethan’s platelets continued to drop making him ineligible for clinical trials. As his parents, we never gave up, continuing to look for additional options and alternative treatments. While in Portland Ethan’s health starting declining fast.
It was on August 8, 2011 that Ethan Jostad earned his Angel Wings."
Ethan's story really touched me, because the area of Southern Oregon where this little boy and his family live is where I use to live. There is also a little girl who lives in this same area by the name of Faith Fulmer who is battling cancer right now. Ethan fought his battle, but he did not lose. He simply passed it on to everyone else to carry on his fight against childhood cancer while his soul gets the much needed rest it longed for. People are more aware now thanks to children like Ethan. Their lives are forever changed, because these children with such strength and bravery touched them and showed them a lot.
His family has carried on his battle strong. Within a day of their son's passing they had Ethan Jostad Foundation showing existence and there were toys pouring into their home to be donated to children who are fighting the same fight their son just dealt with.
"We are committed to providing financial assistance and support to families that have children with cancer. We as parents understand how these small gestures can make a world of difference in these families’ lives.
One of the many activities we conduct is a toy drive. We have asked for everyone to donate toys which in turn will be delivered to children around the nation with cancer. It brings us comfort knowing Ethan is bringing a smile to another child.
Through our Foundation and the memory of our son, we will also spread the awareness of childhood cancer. It is the leading cause of death for children under the age of 15. On average 36 children and adolescences are diagnosed with cancer every day. Despite these facts the research provided for childhood cancer is underfunded. We know that it starts with awareness of which we will advocate through this website and our fundraising efforts.
Ethan had a huge smile and the ability to make friends with everyone, no matter what age. He brought people together and made a difference in their lives. He continues to do so through his Foundation. We will encourage and empower everyone to get involved and make a difference in childhood cancer. "
If anyone would like to help with donations or anything (sponsor an online drive of any kind via blogs, auctions or what not to raise money or collect toys) you can contact me for more information.
Momma Talks has gone yellow and I hope all of you go yellow with me!
Help raise awareness of this monster who is taking our children away from us and help win the battle against Childhood Cancer! Be a part of the cure in the future to help save our future.
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