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April 29th Update:
“Tonight we put sprinkles in the pancakes and lit some candles to celebrate this little guy finishing his protocol for Stage 4 High Risk Neuroblastoma (and please forgive the cheesy singing). In many ways it feels anti-climactic – no ringing of a bell, no bubble parade from nurses – just the five of us who have walked through this storm together. In fact, he will actually get his last dose of accutane as he sleeps tonight and has no idea what any of this means. But he loves candles and pancakes and singing and his people. Tomorrow morning we meet with a research team to discuss his next two years of treatment on a clinical trial that will hopefully start in a month. It doesn’t ever really end and we have learned in this new “world” that nothing is ever certain. So we will celebrate every victory, kiss his head a thousand times a day, and accept every snuggle we can. And we rejoice that this strong kid has survived this past year and is thriving right now. (See the video at the end to see what he finally decided to do last Sunday to melt our hearts – the kid is confident to walk almost anywhere now!)  “Ethen’s Mom
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April 6th Update:

“A year ago today we sat in “the 8 room” of floor 11 at Levine Children’s Hospital and heard the final diagnosis of Stage 4 High Risk Neuroblastoma. The team had prepared us so well to hear it and even so that lengthy discussion filled the room with an immense weight and tension. I remember exactly where Dr O sat and that he spoke with just the right combination of frankness and compassion, but the rest of it is a blur in my memory. I heard words and categories that took me months to understand, but what I did understand was that all of what he said meant this was the bad kind, the aggressive kind, the kind that had already moved to other areas of my child’s body. By that point Ethen was already becoming unrecognizable in look and behavior due to fluids, pain medication and effects of multiple lengthy anesthesias over the week prior. Three days later he would be in the PICU. We knew our child was sick. So when Dr O said we should start chemo that afternoon, we were fully on board.

Today Ethen is here and playing, and as you will see in the post below, he is doing much more. The song my husband posted on the blog is perfect. We are so grateful for today and are seeking to trust in the days ahead no matter what comes.”  -Ethen’s Mom

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March 2nd Update:
This sweet and silly cancer fighter turns 2 today! Please help us wish Ethen Happy Birthday. Ethen’s mom says that Ethen is “full of silly and fully aware of how to get someone’s attention and be ridiculous.” Ethen is still doing well and getting strong each day. He is currently continuing his Accutane treatment, which can make him act a little funky at times. But he is making it through!
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February 9th Update:

Positive news on this peanut to kick off Friday. Ethen went back home earlier this week and is doing very well after taking a big turn in the right direction. Ethen’s mom mentioned to me that the support they have felt is remarkable. Keep praying and lifting their family up. We appreciate our supporters and what they can do for our community and beyond!

Although Ethen will not be doing any more antibody treatment, he will continue on Accutane treatment followed by scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. Then Their hope is to be able to enroll him in a DFMO test trial. If you remember, DFMO was part of a trial in which you helped us fund starting out of Michigan. Results and ease of of the drug on patients have been incredible.

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February 5th Update:
Happy to update that Ethen is starting to return to his silly self. With slight improvements since we last posted, the medical team extubated Ethen last Monday. By Wednesday, the PICU team had weaned Ethen’s oxygen and pain medication enough that they felt comfortable releasing him from PICU to the oncology floor. The medical team continues to monitor his oxygen as well as Ethen’s weight. Ethen’s parents have decided to not undergo any further antibody treatment due to the life-threatening effects it had on the little guy.
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January 23rd:
We want to introduce you to Ethen, a pediatric cancer fighter from North Charlotte, who is in need of lots of thoughts and prayers. Ethen was diagnosed with stage 4 neuroblastoma in April of last year at 18 months old. In the past 10 months, he has endured many rounds of chemo, a major tumor resection surgery, 1 bone marrow transplant, radiation, and 2 rounds of antibody treatment. That’s a lot on a little body.
 
Last week, Ethen started his 3rd round of antibody treatment. Ethen developed capillary leak syndrome, which affects his breathing. Due to respiratory distress, Ethen had to be intubated and rely on a ventilator. He has also developed cytokine-release syndrome, which is another side effect of antibody therapy.
 
Ethen’s lungs have been considerably damaged so it will take time to repair. The fluid and inflammation have reduced his lung volume and functionality. Throughout the last several days, Ethen has taken steps forward and then some steps back. After removing his breathing tube, the medical team had to intubate him again and put him on a oscillator.
 
For those looking outside in and have not personally experienced a child’s fight with cancer… one would think you receive chemo and it makes you sick. When the reality is the impact of adult-like treatments are extremely difficult on little bodies like Ethens’. A child’s body has to fight really hard to deal with various cancer treatments; therefore, not only do they have side effects during the treatment, but forced to face continuous life complications due to the harshness of the treatments on top of that.
 
Please help us lift Ethen and his family up. Being so dialed into Isabella’s care and near her family… I can attest that it makes a difference. The family can feel it. We will continue to share Ethen’s progress. You can also stay updated through his Ethen’s Fight  Facebook page where his parents post updates via their blog.
Follow @IsabellaSantosFoundation
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