BarryBobPosthole
04-05-2022, 09:27 AM
No, not bare. and not Yogi. Like grin and bear it. Like a Thump story.
Two years ago next week, April 2020, our 38 year old daughter Alison developed severe pain and weakness in her right leg and pelvis, almost like sciatica pain. This was right at the beginning of covid, and she went to the emergency room by herself. They did a ct scan and found a mass on her sacrum, which is the heart shaped mass of bone at the end of your spine that ties your pelvis and spine together. All of the major nerves to your lower body also go through that sacrum.
Next thing we knew, she was in an ambulance headed to OU Medical to see a neurosurgeon. They operated the next day and the surgeon removed what he could of the mass and they then tested it and found it to be a cancer called Ewings Sarcoma. If its not identical, its very close to what Co9 had and in a similar place. During this time, the closest we could get to her was the hospital parking lot because of covid. We finally got her home and managed, after two weeks of searching, to get her to a oncologist at Cancer Treatments Centers of America in Tulsa. Because it is a very rare disease in adults, there just aren’t many places that treat it. We then took her to St Louis to the Siteman Cancer Center which is one of the country’s best for Ewings. The prescribed the treatment and CTCA in Tulsa administered it. The treatment plan was 17 rounds of what is described as the toughest chemo prescribed and eight weeks of proton radiation therapy. About eighteen months total of treatment. We moved her home and she started chemo immediately. Julie and I became her caregivers, and she had to give up a really promising career, her volunteer stuff that she loved, finacial independence, and basically everything else. Her church and her friends and of course our family supported her through the entire time. Our other daughter, Robyn flew in and stayed for months at a time to help. Her and Ali were already very close. Thank goodness for being able to work from practically anywhere.
I won’t go into much details, its too hard to think about. But she made it to the end of the treatment plan in August of ‘21. We rang that fucking bell and her scans showed her cancer free at the end of August. We had a huge family dinner at a restaurant, the first in a long time because of covid. Oh yeah, she caught covid right in the middle of chemo and miraculously none of the rest of us caught it. But we were masked up in our own house for three weeks.
She made plans to go back to work and acutally went back around mid-September. She rented an apartment and I made plans to move her in. Then one day at work, right after she had went back, she had to be helped back to her car because of leg weakness. We thought it a side effect of chemo, but she went into the hospital where they scanned her again.,And again, the closest we could getwas the parking lot because of covid. just a month after those same scans and her cancer had returned and spread up and in her spinal cord. The oncologist told her she had weeks to live, and told us weeks, not months. It was devastating. So we brought her home, this time not as caregivers, but as part of hospice. The weeks turned into months and we made it to Thanksgiving, then Christmas. She passed away on St Patrick’s Day, Mar 17th and we buried her the next week. I’ve never witnessed nor concieved of the human suffering that I saw her go through. And never have I seen a more fearless human spirit. As the cancer grew, it took more and more from her, yet she stayed large and in charge to thevery end. Julie and Robyn amd I were there whenshe passed, thankfully peacefully.
I’m sorry for the long post, but I think I needed to get it offmy chest and y’all are it. The best way I can describe howwe are now, is stunned. It’ll be a bit before we will think straight, or eat food with any enjoyment, or about anything else. I did get out and fish Sunday with Keith and it was the first time in a long time I felt human.
I didn’t write this for sympathy or anything else. I just want y’all to know I’m still here.
BKB
Two years ago next week, April 2020, our 38 year old daughter Alison developed severe pain and weakness in her right leg and pelvis, almost like sciatica pain. This was right at the beginning of covid, and she went to the emergency room by herself. They did a ct scan and found a mass on her sacrum, which is the heart shaped mass of bone at the end of your spine that ties your pelvis and spine together. All of the major nerves to your lower body also go through that sacrum.
Next thing we knew, she was in an ambulance headed to OU Medical to see a neurosurgeon. They operated the next day and the surgeon removed what he could of the mass and they then tested it and found it to be a cancer called Ewings Sarcoma. If its not identical, its very close to what Co9 had and in a similar place. During this time, the closest we could get to her was the hospital parking lot because of covid. We finally got her home and managed, after two weeks of searching, to get her to a oncologist at Cancer Treatments Centers of America in Tulsa. Because it is a very rare disease in adults, there just aren’t many places that treat it. We then took her to St Louis to the Siteman Cancer Center which is one of the country’s best for Ewings. The prescribed the treatment and CTCA in Tulsa administered it. The treatment plan was 17 rounds of what is described as the toughest chemo prescribed and eight weeks of proton radiation therapy. About eighteen months total of treatment. We moved her home and she started chemo immediately. Julie and I became her caregivers, and she had to give up a really promising career, her volunteer stuff that she loved, finacial independence, and basically everything else. Her church and her friends and of course our family supported her through the entire time. Our other daughter, Robyn flew in and stayed for months at a time to help. Her and Ali were already very close. Thank goodness for being able to work from practically anywhere.
I won’t go into much details, its too hard to think about. But she made it to the end of the treatment plan in August of ‘21. We rang that fucking bell and her scans showed her cancer free at the end of August. We had a huge family dinner at a restaurant, the first in a long time because of covid. Oh yeah, she caught covid right in the middle of chemo and miraculously none of the rest of us caught it. But we were masked up in our own house for three weeks.
She made plans to go back to work and acutally went back around mid-September. She rented an apartment and I made plans to move her in. Then one day at work, right after she had went back, she had to be helped back to her car because of leg weakness. We thought it a side effect of chemo, but she went into the hospital where they scanned her again.,And again, the closest we could getwas the parking lot because of covid. just a month after those same scans and her cancer had returned and spread up and in her spinal cord. The oncologist told her she had weeks to live, and told us weeks, not months. It was devastating. So we brought her home, this time not as caregivers, but as part of hospice. The weeks turned into months and we made it to Thanksgiving, then Christmas. She passed away on St Patrick’s Day, Mar 17th and we buried her the next week. I’ve never witnessed nor concieved of the human suffering that I saw her go through. And never have I seen a more fearless human spirit. As the cancer grew, it took more and more from her, yet she stayed large and in charge to thevery end. Julie and Robyn amd I were there whenshe passed, thankfully peacefully.
I’m sorry for the long post, but I think I needed to get it offmy chest and y’all are it. The best way I can describe howwe are now, is stunned. It’ll be a bit before we will think straight, or eat food with any enjoyment, or about anything else. I did get out and fish Sunday with Keith and it was the first time in a long time I felt human.
I didn’t write this for sympathy or anything else. I just want y’all to know I’m still here.
BKB