Spencer (6yrs old) has relapsed w/ Ewing's Sarcoma. The good news is it has remained in his eye orbit & has not spread! The bad news is that this is so rare that even the Sarcoma experts are baffled by it. We met with Dr. Huh at MD Anderson & have a plan in place that will hopefully save his life! Please continue with your prayers, we need them! Continue to read his story under "MY STORY"
Spencer Shores, 4 1/2 yrs old, started showing some swelling in his right eye lid in June of 2008 when Mike and I started to wonder what was wrong. We took in daily photos that we had printed from the past month or so to the eye dr and he immediately referred us to a surgeon. On 7/2/08 Spencer had his mass above his right eye orbit removed. He was diagnosed with Ewing's Sarcoma on 7/10/08 and started chemo on 7/11/08. His story continues...
As you can imagine, we were completely shocked as our worlds have now been completely turned upside down. We had just returned from our vacation in Mexico and truly thought his eye swelling was something from Mexico, like an allergy of some sort. Well...not the case! Our precious 4 yr old son has been diagnosed with cancer. And to top it off, a very rare type of cancer! Typically Ewing's is found in the bone. Not the case for Spencer, his was in the soft tissue above his right eye. He is the 9th case reported with this type of cancer, now known as PNET which is the "family" of tumors within Ewing's Sarcoma.
So once we were able to swallow that jagged little pill, we were able to start actually "hearing" what the next steps were. Trust me when I say "hearing" versus accepting, acknowledging, etc...Mike and I just could not comprehend what we were hearing muchless his treatment plan including chemo and radiation. Are you sure this is cancer? How could this be?
Well, it was. So Spencer has to have 14 chemo treatments which will occur every 2 weeks. A very aggressive schedule for a very aggressive type of cancer. After round 7, he will undergo radiation while enduring chemo. He will have many scans along the process and for the rest of his life.
We have decided to go to Houston for Spencer to undergo "proton" (vs traditional photon) radiation. Proton is much more selective to the tumor which ends up being much safer and reduces the risk of side effects as well as long term effects. So we will be in Houston for 6-7 weeks for a max of 31 radiation treatments. Spencer will also stay on his 2 week chemo regimen while undergoing radiation. Hopefully he will be finished with all of this by the end of Feb 2009!
1/09: Spencer completed his 25 proton radiation treatments on 12/12/08. MD Anderson was amazing and the crew at the Proton Center was incredible! THANK YOU!!!
3/09: Spencer completed his last chemo treatment on 2/27/09! His latest MRI shows no evidence of a tumor and his doctors are saying that he is in remission and NED (no evidence of disease). YEAH! Spencer should be getting some more scans towards the end of March 2009, so we will keep you all posted. After that, he will have scans every 3 monhs for the next 4 years...so keep praying for NED!
Spencer completed his last round of chemo on Feb 27th, 2009!!! Spencer was considered NED (no Evidence of Disease) after his first scan which happened in May 2009. He remained NED throughout 2009 and then his eye started looking suspicious again in January of 2010. He had an MRI and it showed tumor activity again in the same eye. After surgery the pathology report came back saying that his Ewing's Sarcoma had returned in the same eye but luckily had NOT spread to any other area in his body! We thank GOD everyday for that! However, Spencer gets his port put back in and another bone biopsy (to make sure it has not spread to the bones since this type of cancer typically is in the bone) on Monday March 1, 2010. He will also begin chemotherapy again on Monday and there will be 12 rounds of this type of chemo. His last day of chemo was 12/17/2010!
10/13/2010 We ended up getting a second opinion from Sloan Kettering in NY and decided to have Spencer's eye surgery done there. He ended up having his right eye removed including all muscles and tissue removed. So he litterally has a big hole where is eye would be. they did keep the eye brow bone in place as well as the cheek bones and they said the bones looked great and were not eaten away by the cancer! THANK GOD!!! So in 9-12 months we will find an "Artist" to creat an eye with lids and lashes to match his other eye. It will not move opr blink or shut as there are NO muscles attached to it but we are ok with that! Spencer is handling his 1 eye amazingly well and can see sooooo much better than before!
THANK YOU ALL for standing by us, holding us up, praying, loving and caring for us and truly being the BEST support system WE could have ever asked for! Love you all and please continue to pray for us and follow us down this path! xoxoxoxoxoxoxo
20 Months NED
Sep 15, 2012 1:18pm
First and foremost, Spencer is great! He is 20 months NED, in the 3rd grade and is doing good! His orbit is still healing so no talk of a prosthetic yet; however we are getting close. The docs are not worried about how long the process is taking because he has had such a large amount of radiation to the area (Proton and seeds after the exenteration). I can't believe next month will mark the 2 year mark since that surgery. Crazy!
Ok...so here comes the bad news. But don't worry, it is not about us. It is about this shitty world that involves cancer! Sue Guenther, a dear friend that found us through CaringBridge passed away a few days ago from cancer. One of our favorite child life specialist is in hospice from a relapse with her breast cancer. And...the first person/family we met in the hospital, Jette (i think he was 8 or so) who had Ewing's in his ribs has relapsed after 4 years of NED!!! WTF? I HATE THIS!!!
I am celebrating the fact that Spencer is alive and well but the fear is overwhelming at the moment!
However, the good side of this is being able to be there for others. I recently had a mom reach out to me because her 3 year old son has been dx with spindle-cell sarcoma in his left eye and has to have the whole orbit removed like Spencer. So I am fortunate to have walked the path and give hope and strength to others when they need it. But what I would do not to have ever been thrown into this world...it sucks!!! And with that said, I really need to update "my story" and pictures so when people to read our story, they have hope to read about.
All I can say is please...enjoy life, love your family and friends and love yourself! Be thankful for what you do have. Enjoy your children, love them and hold them like there is no tomorrow...because unfortunately there are no guarantees in life!!!
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