Medical Expenses for Skylar Dennis
Spende geschützt
This is for my granddaughter Skylar...
December 9th, 2020 Skylar woke up a little off balance and had some mild stumbling when she was walking. Her pediatrician examined her and saw some worrisome signs, we were also informed that day she had fallen off monkey bars prior so we were sent to the ER for x-rays, ct scans, and some blood work. We thought possibly a mild concussion, no big deal. Her scans showed everything looked fine so her Pediatrician recommended we'd go home and monitor over night.
The next morning Skylar's entire upper body is shaking and trembling as if she has Parkinson's Disease. She can barely stand up without falling, she is unable to put on her shirt unassisted. Her right arm is drawing up and twitching randomly, almost like a seizure and she says "I'm not doing this, something is making my arm do this." We call her pediatrician and he tells us to pack a bag and go back to the ER because we need an MRI of her brain. We get back to the ER, same doctor who saw us the night prior is there and he looks at me and says 'We've got to get her somewhere else, we are not equipped. This looks like a stroke.' 30 minutes later we were being transported by AMR to the Women and Children's Hospital in Mobile, Alabama.
We spent a week in Mobile, had a team of 24 specialists and physicians looking at Skylar's case, along with countless residents. She had every test and every scan you can think of with everything coming back clear and normal so we were sent home with a "probable diagnosis" of Post infectious acute cerebellar Ataxia. She was expected to make a full recovery with the help of some occupational and physical therapy.
Once we got home, Skylar's symptoms progressively got worse. She started having strange eye movements, often referred as 'dancing eyes', she couldn't complete simple tasks like feed herself or brush her own hair, she was struggling with sleep and having tremors at night, and she started having urinary accidents daily. We repeatedly called her pediatrician and were repeatedly told she would get better, just give it time. She wasn't getting better.. and the eye movements became more frequent. On Monday, December 28th, 2020. I was at work and get a call from her pediatrician. He talked to a neurologist who said Skylar needed some more tests because she sounded like a child showing paraneoplastic symptoms from a Neuroblastoma. This neurologist wanted to see Skylar as soon as he was back on the coast for further evaluation, but her pediatrician wanted her in his office the next morning. We take her to the pediatrician, he says 'oh wow, she looks better.' Micah and I are stumped as she most definitely does not look better however her symptoms 'wax and wane', so different times of the day are better or worse, and some symptoms will be present today and seemingly better tomorrow while another symptom will be doing the same. (For instance, her eyes and voice will be worse today but her walking is good, tomorrow her walking will be the worst but her hands won't be shaking. Etc.)
December 31st we met with the Pediatric Neurologist. He spent 15 minutes hearing our story and looking at Skylar and was immediately able to diagnose her with Opsoclonus-Myoclonus Ataxia Syndrome. OMAS is a very rare disease that usually presents itself in children who have undiagnosed Neuroblastoma tumors. We were shocked to learn that this neurologist had recommended Skylar be put on steroids and have an ultrasound and ct-scan done of her abdomen to rule out this possibility almost two weeks prior to this appointment but her pediatrician failed to do so. More labs, more scans, fighting with insurance companies and paying cash for things just to get the ball rolling has been tough. We started physical and occupational therapy and we finally were able to get insurance to approve her lower body MRI.
Monday, I got a call from her Neurologist and the results from her scans showed two good size masses in her abdomen and we needed to leave immediately to head to Jackson to be transferred to the best for this condition. The presence of tumors meant that Skylar's neurological problems are here to stay and we were going to have to gear up to fight the beast that Neuroblastoma is. They repeated every scan, every lab test, everything you can possibly think of once we got here. The immediate plan of action was to do a bone marrow biopsy to ensure it hasn't metastasized there, then we could begin to evaluate which treatment routes to take for this cancer.
Tuesday morning we get wonderful news that the masses in her abdomen are no longer there. While this may be some sort of unexplained miracle, and quite honestly the most comforting news we could hear.... it puts us immediately back at square one. We have now been misdiagnosed TWICE, yet Skylar still has OMAS and all the symptoms that arise because of it, and we now have no way of knowing what caused it so we don't know how to properly treat it. Not a single physician here has actually seen OMAS in person, other than her neurologist who has only seen it present itself in children with Neuroblastoma. In the medical world there is a phrase used when Doctor's are trying to diagnose strange things- "don't look for the zebra in a field of horses." We've been told Skylar is a Rainbow Unicorn in a field of Zebras, (how fitting that is since she has an obsession with tie dye and unicorns). Her case is the rarest of the rare and she does not fit the criteria for anything text book. The only plan of action we have now is to start IVIG treatments and hope that they show some improvement in her symptoms, otherwise we are left with clinical trials using chemotherapy medications to experiment and that is something I am very hesitant to consider. Her Neurologist is adamant that we won't leave here until we find a treatment that works and a plan to get her well. While we all agree and want the same- that is what leads us here.
It really hurts my pride to even have to be here but we don't have another choice. We have missed a ton of work already and I do not have Paid Time Off to use. Micah has been fortunate to work for an amazing company who is allowing his salary to stay the same, however it is eating all of his PTO and we still have a baby coming in late April/ May. Skylar's insurance has been hell to fight with and we have paid cash for a good bit of her medical expenses just to cut down on the headache. We have racked up in bills and were already paying cash for my OBGYN monthly visits until my insurance would kick in (I am 6 months pregnant), so this thrown into the mix has clearly drained our savings. I am unable to work full time now due to Skylar's health demands and how booked our normal week has become with different appointments and specialists. Now that we're here in the hospital until further notice- we are both going to be out of work until then, too. Bills don't stop, and the travel expenses and food costs alone are high enough, (parking is $15 a day here how fun), much less all of the medical expenses that are stacking up. I never thought I'd ever be in a position like this, I am truly so embarrassed to have to ask for help but we're here. If you can't donate, I beg that you send good vibes and prayers our way as this journey is just getting longer. We do not know how long we will be here or what our future prognosis looks like.
December 9th, 2020 Skylar woke up a little off balance and had some mild stumbling when she was walking. Her pediatrician examined her and saw some worrisome signs, we were also informed that day she had fallen off monkey bars prior so we were sent to the ER for x-rays, ct scans, and some blood work. We thought possibly a mild concussion, no big deal. Her scans showed everything looked fine so her Pediatrician recommended we'd go home and monitor over night.
The next morning Skylar's entire upper body is shaking and trembling as if she has Parkinson's Disease. She can barely stand up without falling, she is unable to put on her shirt unassisted. Her right arm is drawing up and twitching randomly, almost like a seizure and she says "I'm not doing this, something is making my arm do this." We call her pediatrician and he tells us to pack a bag and go back to the ER because we need an MRI of her brain. We get back to the ER, same doctor who saw us the night prior is there and he looks at me and says 'We've got to get her somewhere else, we are not equipped. This looks like a stroke.' 30 minutes later we were being transported by AMR to the Women and Children's Hospital in Mobile, Alabama.
We spent a week in Mobile, had a team of 24 specialists and physicians looking at Skylar's case, along with countless residents. She had every test and every scan you can think of with everything coming back clear and normal so we were sent home with a "probable diagnosis" of Post infectious acute cerebellar Ataxia. She was expected to make a full recovery with the help of some occupational and physical therapy.
Once we got home, Skylar's symptoms progressively got worse. She started having strange eye movements, often referred as 'dancing eyes', she couldn't complete simple tasks like feed herself or brush her own hair, she was struggling with sleep and having tremors at night, and she started having urinary accidents daily. We repeatedly called her pediatrician and were repeatedly told she would get better, just give it time. She wasn't getting better.. and the eye movements became more frequent. On Monday, December 28th, 2020. I was at work and get a call from her pediatrician. He talked to a neurologist who said Skylar needed some more tests because she sounded like a child showing paraneoplastic symptoms from a Neuroblastoma. This neurologist wanted to see Skylar as soon as he was back on the coast for further evaluation, but her pediatrician wanted her in his office the next morning. We take her to the pediatrician, he says 'oh wow, she looks better.' Micah and I are stumped as she most definitely does not look better however her symptoms 'wax and wane', so different times of the day are better or worse, and some symptoms will be present today and seemingly better tomorrow while another symptom will be doing the same. (For instance, her eyes and voice will be worse today but her walking is good, tomorrow her walking will be the worst but her hands won't be shaking. Etc.)
December 31st we met with the Pediatric Neurologist. He spent 15 minutes hearing our story and looking at Skylar and was immediately able to diagnose her with Opsoclonus-Myoclonus Ataxia Syndrome. OMAS is a very rare disease that usually presents itself in children who have undiagnosed Neuroblastoma tumors. We were shocked to learn that this neurologist had recommended Skylar be put on steroids and have an ultrasound and ct-scan done of her abdomen to rule out this possibility almost two weeks prior to this appointment but her pediatrician failed to do so. More labs, more scans, fighting with insurance companies and paying cash for things just to get the ball rolling has been tough. We started physical and occupational therapy and we finally were able to get insurance to approve her lower body MRI.
Monday, I got a call from her Neurologist and the results from her scans showed two good size masses in her abdomen and we needed to leave immediately to head to Jackson to be transferred to the best for this condition. The presence of tumors meant that Skylar's neurological problems are here to stay and we were going to have to gear up to fight the beast that Neuroblastoma is. They repeated every scan, every lab test, everything you can possibly think of once we got here. The immediate plan of action was to do a bone marrow biopsy to ensure it hasn't metastasized there, then we could begin to evaluate which treatment routes to take for this cancer.
Tuesday morning we get wonderful news that the masses in her abdomen are no longer there. While this may be some sort of unexplained miracle, and quite honestly the most comforting news we could hear.... it puts us immediately back at square one. We have now been misdiagnosed TWICE, yet Skylar still has OMAS and all the symptoms that arise because of it, and we now have no way of knowing what caused it so we don't know how to properly treat it. Not a single physician here has actually seen OMAS in person, other than her neurologist who has only seen it present itself in children with Neuroblastoma. In the medical world there is a phrase used when Doctor's are trying to diagnose strange things- "don't look for the zebra in a field of horses." We've been told Skylar is a Rainbow Unicorn in a field of Zebras, (how fitting that is since she has an obsession with tie dye and unicorns). Her case is the rarest of the rare and she does not fit the criteria for anything text book. The only plan of action we have now is to start IVIG treatments and hope that they show some improvement in her symptoms, otherwise we are left with clinical trials using chemotherapy medications to experiment and that is something I am very hesitant to consider. Her Neurologist is adamant that we won't leave here until we find a treatment that works and a plan to get her well. While we all agree and want the same- that is what leads us here.
It really hurts my pride to even have to be here but we don't have another choice. We have missed a ton of work already and I do not have Paid Time Off to use. Micah has been fortunate to work for an amazing company who is allowing his salary to stay the same, however it is eating all of his PTO and we still have a baby coming in late April/ May. Skylar's insurance has been hell to fight with and we have paid cash for a good bit of her medical expenses just to cut down on the headache. We have racked up in bills and were already paying cash for my OBGYN monthly visits until my insurance would kick in (I am 6 months pregnant), so this thrown into the mix has clearly drained our savings. I am unable to work full time now due to Skylar's health demands and how booked our normal week has become with different appointments and specialists. Now that we're here in the hospital until further notice- we are both going to be out of work until then, too. Bills don't stop, and the travel expenses and food costs alone are high enough, (parking is $15 a day here how fun), much less all of the medical expenses that are stacking up. I never thought I'd ever be in a position like this, I am truly so embarrassed to have to ask for help but we're here. If you can't donate, I beg that you send good vibes and prayers our way as this journey is just getting longer. We do not know how long we will be here or what our future prognosis looks like.
Organisator und Spendenbegünstigter
Scott Foster
Organisator
Biloxi, MS
Destiny Thomas
Spendenbegünstigte