Nola Cantrell's Donation Campaign
Donation protected
Kaci works for me and has become a close friend, it's funny how the people you work with become like family.. I am hoping to minimize some of the financial stress she will have going through this process.
Kaci Cantrell and Jessica Warlick have 2 beautiful twin girls, Nola and Poppy. This is the story of Nola’s journey over the past 8 weeks…..
April 23 - We took Nola to urgent care yesterday thinking Poppy had given her strep (which she had) and they happened to find a mass in her abdomen. An X-ray led us to Children's - Legacy from there then by ambulance to Children's - Dallas overnight based on ultrasound and CT scan. The team here is fairly certain it's neuroblastoma. They're doing a full body MRI today to see if it's spread anywhere else and a biopsy Monday to know for certain whether it's cancer or not. We're obviously hoping we'll all be pleasantly surprised from those results, but I don't think they'd tell us what they have if they weren't highly doubtful the results will be good.
April 25 - We are still only at a point in the process where they will talk in "fairly certain" and "all things point towards" terms. So, while they can't tell us they're 100% sure it's neuroblastoma, they know it's cancer. They also currently see every indication that's it's an isolated tumor and it hasn't spread. But we won't know for sure for about another 8-9 excruciatingly long days. So, we got home from the hospital just a bit ago and are trying to do our best to recover and go back to normal as much as we can until she has her big full body scan middle of next week
May 17 - Looks like they're optimistic we can leave tomorrow night. Oncology has suggested we do one more nuclear radioactive scan before leaving tomorrow night, assuming she keeps looking good otherwise. We then have to come back Wed. for results on that and the last bit of tumor pathology and recommendation for next steps for treatment. So, it's looking like Thurs. I can finally start working from home. I'm hopeful I can just work from home with her the rest of the week as we get a handle on all the meds she'll need to take at home especially since several are still through an IV line or injection. Sadly, it looks like this two year old will leave needing to stay on about six medications including one for blood pressure, a blood thinner, two antibiotics, etc. It's looking like they're narrowing it down to a super rare cancer, even more so than the neuroblastoma that only affects maybe 400 kids a year. It has a long name and when you do a google search it only brings up two hits. Our Dr., who is a neuroblastoma specialist, could only find one other pediatric case ever recorded in the US. It only got a name back in 1995. So, of course, there isn't a lot known about it, what treatment seems to work the best, how fast or wide it can spread, etc. We're extremely tired of hearing how extraordinarily rare things are when they keep happening to her. "Oh, a blood clot putting her kidney at risk for removal is highly unlikely" or "negative reaction to this is extremely rare" or "neuroblastoma is very rare... This is about 100 times more rare." We really don't want her to be that exceptional anymore.
May 23 - Well, just about four weeks after they found Nola's tumor, we FINALLY have the name of the cancer: Sclerosing Epithelioid Fibrosarcoma (SEF). It's extremely rare (significantly more than the very rare neuroblastoma that they originally thought it was), in fact, there are only a couple of documented pediatric cases. Because of that, there isn't a lot of data to support one treatment plan over another. So, next steps: she has a super small speck on one of her lungs that they want to take out. Surgery is currently scheduled for June 6. Once they get pathology back from that, they should know whether it's from the first mass spreading or if it's nothing. Those results will lead them towards the next treatment plan.
June 15 - Pathology came back and the spot on Nola's lung that they went in for last week proved to be cancerous. Since this is considered a spread of the initial cancer, but one that has jumped organs/areas (as opposed to just spreading around where the first tumor was), they've categorized her as Stage 4. In a nutshell, the options we discussed with the doctors today were basically reactive (wait and see) or proactive (fight). So, we're going to fight. Starting this Thursday, she'll undergo six months of chemo, sprinkled with localized radiation about every other three-week cycle. Unfortunately, since we're aiming to kill cancerous cells too small to show up on any scans, we don't have a real way to gauge whether it's working or not. We just have to continue scans for reoccurrence throughout chemo and after and hope for the best.
Kaci Cantrell and Jessica Warlick have 2 beautiful twin girls, Nola and Poppy. This is the story of Nola’s journey over the past 8 weeks…..
April 23 - We took Nola to urgent care yesterday thinking Poppy had given her strep (which she had) and they happened to find a mass in her abdomen. An X-ray led us to Children's - Legacy from there then by ambulance to Children's - Dallas overnight based on ultrasound and CT scan. The team here is fairly certain it's neuroblastoma. They're doing a full body MRI today to see if it's spread anywhere else and a biopsy Monday to know for certain whether it's cancer or not. We're obviously hoping we'll all be pleasantly surprised from those results, but I don't think they'd tell us what they have if they weren't highly doubtful the results will be good.
April 25 - We are still only at a point in the process where they will talk in "fairly certain" and "all things point towards" terms. So, while they can't tell us they're 100% sure it's neuroblastoma, they know it's cancer. They also currently see every indication that's it's an isolated tumor and it hasn't spread. But we won't know for sure for about another 8-9 excruciatingly long days. So, we got home from the hospital just a bit ago and are trying to do our best to recover and go back to normal as much as we can until she has her big full body scan middle of next week
May 17 - Looks like they're optimistic we can leave tomorrow night. Oncology has suggested we do one more nuclear radioactive scan before leaving tomorrow night, assuming she keeps looking good otherwise. We then have to come back Wed. for results on that and the last bit of tumor pathology and recommendation for next steps for treatment. So, it's looking like Thurs. I can finally start working from home. I'm hopeful I can just work from home with her the rest of the week as we get a handle on all the meds she'll need to take at home especially since several are still through an IV line or injection. Sadly, it looks like this two year old will leave needing to stay on about six medications including one for blood pressure, a blood thinner, two antibiotics, etc. It's looking like they're narrowing it down to a super rare cancer, even more so than the neuroblastoma that only affects maybe 400 kids a year. It has a long name and when you do a google search it only brings up two hits. Our Dr., who is a neuroblastoma specialist, could only find one other pediatric case ever recorded in the US. It only got a name back in 1995. So, of course, there isn't a lot known about it, what treatment seems to work the best, how fast or wide it can spread, etc. We're extremely tired of hearing how extraordinarily rare things are when they keep happening to her. "Oh, a blood clot putting her kidney at risk for removal is highly unlikely" or "negative reaction to this is extremely rare" or "neuroblastoma is very rare... This is about 100 times more rare." We really don't want her to be that exceptional anymore.
May 23 - Well, just about four weeks after they found Nola's tumor, we FINALLY have the name of the cancer: Sclerosing Epithelioid Fibrosarcoma (SEF). It's extremely rare (significantly more than the very rare neuroblastoma that they originally thought it was), in fact, there are only a couple of documented pediatric cases. Because of that, there isn't a lot of data to support one treatment plan over another. So, next steps: she has a super small speck on one of her lungs that they want to take out. Surgery is currently scheduled for June 6. Once they get pathology back from that, they should know whether it's from the first mass spreading or if it's nothing. Those results will lead them towards the next treatment plan.
June 15 - Pathology came back and the spot on Nola's lung that they went in for last week proved to be cancerous. Since this is considered a spread of the initial cancer, but one that has jumped organs/areas (as opposed to just spreading around where the first tumor was), they've categorized her as Stage 4. In a nutshell, the options we discussed with the doctors today were basically reactive (wait and see) or proactive (fight). So, we're going to fight. Starting this Thursday, she'll undergo six months of chemo, sprinkled with localized radiation about every other three-week cycle. Unfortunately, since we're aiming to kill cancerous cells too small to show up on any scans, we don't have a real way to gauge whether it's working or not. We just have to continue scans for reoccurrence throughout chemo and after and hope for the best.
Organiser and beneficiary
Stacie Medcalf
Organiser
Frisco, TX
Kaci Cantrell
Beneficiary