9/26/19 ❤️❤️❤️ we truly have no words that would adequately express our gratitude for the tremendous outpour of love and support for Owen and our family ❤️❤️❤️
Here is Owen’s story so far... Owen went for an X-ray back in May for what we though may have been a broken rib... they they took xray’s, said “yes” to a broken rib ordered a CT scan too... specifically said to rule out a tumor bc he couldn’t remember an actual event or moment that he may have broken his rib... playing lax all the time... the scan came back they said “no tumor” scan showed “a hematoma consistent with the 9th rib fracture” ... they told me “it may look worse before it’s completely healed but not to worry and that it would take a long time to heal but not to worry” We paid attention and watched it for the next several weeks and it started to become larger... we made an appt to see a thoracic specialist at Mercy Hospital... Fast forward to last Tuesday the thoracic specialist, Dr Fitzpatrick, saw and examined Owen he immediately ordered another ct scan which was complete that morning he called Thursday morning with the results stating “it was bad; it was a tumor back in May they shouldn’t have missed” every doctor here has said it shouldn’t have been missed... it was obvious then but now the original tumor is 3x the size it was, he has a second tumor about the same size in addition to nodules on both his R and L lung... they admitted Owen to Johns Hopkins Monday, September 22, 2019 and he had biopsy surgery Tuesday evening; there was an unfortunate complication during his surgery and it took an additional 4hrs to complete. Owen came out like a champ as expected having a biopsy from the tumor providing 2 samples of tissue, over a liter of fluid drained from his R lung, a central line/port place in his upper R chest, and 2 bone marrow extractions where his L hip bone broke the extraction needle during the procedure... WOW!!!! Owen slept most of the early morning in the PACU after needing extra Anesthesia, when the needle broke... came of of surgery @ 01:25am... began @ 8:30pm We do not have the exact treatment plan until they know exactly what we are dealingwith... the oncology team suspects is Medatastic( it has spread) Ewing’s sarcoma Long surgery was accomplished... he had a PET scan Wednesday morning... the PET revealed what the last week’s scan showed w/some activity in the head of The R femoral head (hip area) Nothing showing in bone marrow or other locations on the PET... doctors are examining his liver a bit more closely based on the location of his tumor and it’s proximity and depression in the liver The Oncology Team is also ordering an MRI to look more closely at the femoral head These pieces of the puzzle are complete awaiting the biopsy findings, the MRI and deeper dive into the layers of the liver 🙏... it’s the weekend now so looks like we wait... patience is difficult but we are trying... 🙏❤️💪🏻 For a few more days to be able to get a complete treatment plan and get Owen on the eradication road
We are in awe, humbled by the love and support surrounding us... Our baby is so brave, full of courage and it’s killing us that we can’t just take it away... BUT Owen will eradicate this fucker and he will heal!!!
Please keep the prayers coming!!! Love you all and Thank you ❤️ From every ounce of our being for your support!!!! xoxoxoxo
10/1/19 Confirmation of diagnosis after pathology: Medatastic Ewing Sarcoma Treatment plan will be 14 cycles of chemo; each cycle runs 14days in theory but Owen’s counts will tell whether his body is ready every 14days, there may be weeks that he will need a bit more time between Chemo started 10/1/19 1st,3rd, and 5th medicating cycles last 2 days 2nd,4th, and 6th medicating cycles last 5days After the 6th cycle chemo treatment will pause for new scans to assess affect on the primary tumor... the plan then is to have shrunk it enough to remove it and additional surrounding ribs to reveal clean margins... what does that mean, or how that will look? The surgeons will have 4 teams ready in the OR to do the necessary reconstruction for whatever they encounter Then after surgery the oncology team will evaluate whether Owen will have radiation or proton therapy, of course this choice of course will be our decision. Owen will then return to chemo for an additional 8 cycles alternating 2 rotations again every 14 days... body pending
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