Chelsi Weber @cwebs21

childhood cancer advocate, bereaved mom of Owen, nurse practitioner fighting for change in the medical community to help kids Wisconsin, USA Joined August 2009

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160
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97
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810
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Chelsi Weber @cwebs21

4 weeks ago

My sweet boy died because he couldn’t breathe. His CT scan didn’t show progression of disease. His bronchoscopy didn’t show infection. But he was denied steroids while he deteriorated. I suspect he had pneumonitis from his new chemo regimen.

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Adam Kolom @AdamKSay

3 months ago

strong agree. focusing only on minimizing (perceived) clinical risk by betting on targets already successfully drugged by many others ignores both economic risk of irrelevance, slows the sector's innovation for patients, and under capitalizes potential breakthroughs

David K. Yang @davidkmyang

3 months ago

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Jason Locasale, PhD @LocasaleLab

a month ago

Scientists know the system is broken. They just can’t say it—because their funding depends on pretending it’s fine.

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Chelsi Weber @cwebs21

2 months ago

His next round of ifosfamide was supposed to be outpatient. We got insurance to allow him to wear a chemo backpack. We went to Milwaukee to get his port accessed and hooked up and went home. When we got home, something was leaking. Back to Milwaukee we went

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Chelsi Weber @cwebs21

2 months ago

Our whole family and our community came together to throw Owen and our family a benefit. He had so much fun being the center of attention, and being around all of our family. He was even interviewed for the news. Owen was always happiest surrounded by family

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Chelsi Weber @cwebs21

2 months ago

Back home and with his brothers, he decided that he didn’t want to bother with has walker anymore and was trying to gain independence back. The strongest boy I’ve ever known

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Chelsi Weber @cwebs21

3 months ago

His brothers came to visit once, but it was so hard on them to have to leave us there. We missed so much of their lives while Owen was fighting for his.

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Chelsi Weber @cwebs21

3 months ago

We did the first round of ifosfamide in Milwaukee. It was a 7 day stay and academic hospitals are a nightmare for patients. So many different people in and out, asking him to put on chapstick and do the mouthwash, never checking the bags and then coming back in 10 min

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Chelsi Weber @cwebs21

3 months ago

He was off chemo for another 10 days, making it about 6 weeks since he had chemo last. Next step was ifosfamide.. that’s always next for relapsed osteosarcoma even though it doesn’t work

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Chelsi Weber @cwebs21

3 months ago

Other than too large of a dose of Ativan, his surgery was uneventfully and he did great. They had to move his port to the other side because of the proximity to his clavicle tumor, so that was pretty sore for the next few weeks.

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Chelsi Weber @cwebs21

3 months ago

He was playing his PlayStation the next day. He looked so good and had minimal disease burden, so after I collected myself I was still hopeful. We just had to get him on something to stop this from spreading

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Chelsi Weber @cwebs21

3 months ago

They tried to deflect and say that it likely was already grown that advanced when we found it, but the CT scans/MRIs should be able to see if it was already grown into subclavian artery, nothing was said to me about that before his surgery. Wish I could read the images myself

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Chelsi Weber @cwebs21

3 months ago

instagram.com/reel/DKCufClt_… @NIHDirector_Jay @SecKennedy @POTUS @FLOTUS @PressSec @melindagates @gatesfoundation

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Rapid Response 47 @RapidResponse47

4 months ago

.@POTUS reads out the "alarming findings" of the MAHA Commission Report on childhood health: - More than 40% of American children have at least one chronic health condition. - Since the 1970s, rates of childhood cancer have soared by nearly 50%. - In the 1960s, less than 5% of…

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Chelsi Weber @cwebs21

4 months ago

I found out the next day that the other 2 surgeons hadn’t been asked to do Owen’s surgery until April 2nd when I insisted the mychart message be forwarded to them. They all lied to me

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Chelsi Weber @cwebs21

4 months ago

After the surgery was complete, they came out and said they couldn’t remove the humerus cancer fully either. They said that it invaded the bone marrow. I slept with my head on his bed and cried all night. How could this have happened?

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Chelsi Weber @cwebs21

4 months ago

I was confused and devastated. Why can’t they take out part of the vessel and graft it? He told me that he had NO concerns about this happening. He made me feel like I was over-reacting for weeks and I was scared of this happening. He still had to do his humerus part of surg

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Chelsi Weber @cwebs21

4 months ago

On the day of Owen’s surgery, his surgeon tried again to make me take a bone out of his leg. He came out half way through with the oncologist to tell us that he couldn’t remove the collarbone tumor fully- that it had grown into the subclavian artery

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Chelsi Weber @cwebs21

4 months ago

Owen’s surgeon called me and said 1 of the other doctors offered to do half of Owen’s surgery that week. He couldn’t do both tumors and they would make him do 2 separate surgeries on 2 seperate days. How could I put him through that?

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Chelsi Weber @cwebs21

4 months ago

One time they called and offered to admit for pain control, but would not move his surgery. The final mychart message they tried to not send to the other drs, but when i pushed, they discussed Owen on April 3rd.