- B
- M
It’s been over 2.5 years since our dear Veda was diagnosed with systemic onset juvenile idiopathic arthritis. Don’t let the arthritis part fool you, SJIA is very rare and aggressive inflammatory disease that causes lots of issues for Veda. Fevers, itching, enlarged liver and spleen, countless doctor and ER visits, failed medications, hospital stays and of course, inflammation. This disease is so complicated and continues to knock us down time after time.
A year ago Veda was diagnosed with a lung disease called pulmonary alveolar proteinosis (PAP) which has caused large amounts of inflammation in her lungs. That inflammation has the potential to turn into irreversible scarring. She is one of only 30-40 kids in the country to suffer from these. The two diseases complicate each other in ways we never dreamed possible.
We have had 4 trips to Cincinnati to see an amazing medical team that treats both conditions. The key is to keep Veda’s immune system so suppressed that it’s not strong enough to continue fighting her. As you can imagine, being maxed out on immunosuppressants comes with it’s repercussions. Her risk of infection is astronomical.
Currently Veda is hospitalized with her second episode of macrophage activation syndrome, a secondary life threatening complication of SJIA and PAP. She has received her 3rd PICC line (until her little body is stable enough for a port) and is undergoing many combinations of medications to try and bring her labs down to safe levels. If we’re unable to get these overactive cells to settle down in the next couple of days, we will be forced to start chemotherapy and actually kill the overactive cells in order to keep Veda safe.
The purpose of this gofundme and increases goal is to raise money to help with Veda’s medical bills, our ongoing trips to Cincinnati and follow up care. As always, thank you for taking the time to read our updates (no matter how bad I butcher them because I’m so exhausted when I type them) and for the continuous support you all offer. Whether that be monetary donations or prayers and good thoughts, we appreciate it!
-The Schumachers
updated 5.31.2018
It's taken our family 7 months to open up about our story and we are beyond relieved to start sharing. Let me rewind and start from the beginning..
October 2015 started out like any other month. Eden had just started kindergarten and we were busy preparing for one of our favorite holidays, Halloween. Suddenly Veda (then two and a half) started spiking high fevers and developed a very strange blotchy rash. At the same time she complained about some foot pain that we thought was unrelated.
After a few days of a 103-104 degree fever and a "hivey" looking rash we brought Veda in to her pediatrician. She did a physical exam and checked for some commom childhood illnesses like strep throat and influenza. She sent us home with a viral diagnosis. After two more days of the same fever and rash we brought Veda back in to her pediatrician who did another physical exam and this time a CBC. Veda's labs came back mildy abnormal but not abnormal enough to suggest anything besides a virus. Again, we went home with a viral diagnosis and some antihistamines to help the hives. Fast forward 4 more days, still running crazy fevers and still fighting this strange rash, I woke Veda up for her routine 3am dose of Tylenol and she was the hottest I have ever felt her. My heart dropped and panic took over when the thermometer said 106 degrees!!! At this point we headed to the ER. After explaining the previous 9 days and some IV fluids they sent us to Children's Hospital to rule out Kawasaki disease.
Within hours of arriving at Children's we were admitted and they began ruling out one disease after another. In the next 4 days we saw infectious disease, hematology, neurology, dermatology, oncology and went through a number of different procedures including a spinal tap, MRI, ultrasounds, echocardiogram, EEG, and then our worst nightmare, a bone marrow biopsy to rule out leukemia. It wasn't until they walked into our hospital room with a smile on their face telling us this definitely isn't leukemia, that I think I finally exhaled. The final specialist to walk through our door was rheumatology. She took one look at Veda and said, "this is classic JIA" juvenile idiopathic arthritis. I kept thinking, this isn't leukemia so we're ok. But we had no idea how 3 little letters could completely change life as we knew it.
After a couple days of a medication called anakinra and getting Veda's fevers controlled we were discharged with a new medication called actemra. Veda did good for the first few days but soon she started spiraling out of control...again. Over the next 3 weeks Veda slowly quit playing, then she quit using the toilet, and pretty soon she quit walking and eating.
We were admitted to Children's again and this time for nearly 10 days. She was started on anakinra soon after ariving and within two hours I caught her bouncing her leg to the music. It was from this moment I referred to anakinra as a miracle drug. After almost 2 weeks in the hospital and many high doses of our "miracle drug" Veda got a PICC line (basically a long term IV) placed so we could continue this very aggressive treatment at home. We were discharged and got home just in time for Christmas. God is so good!
The next 5 months were the most intense, uphill battle, filled with multiple set backs and lots of medications. We were doing a very high dose of 800mg of anakinra daily. Veda would start doing good, her labs would start trending down, so we would try and wean the anakinra only for her fevers to come back and her labs jump through the roof again. Her rheumatologist quickly added more meds to her regimen. Cyclosporine twice a day to help prevent her immune system from attacking itself, methotrexate weekly (which is actually a chemotherapy drug, but used in smaller doses can help reduce inflammation, and naproxen twice a day. This has been our plan since January. And with lab draws every week and close monitoring, Veda has been doing pretty good.
For the last two months we have been working on switching Veda from anakinra to canikinumab. This new medication would be an injection in her tummy every 4-8 weeks and works similarly to anakinra so we had hope. Sadly, that hope was taken away from us when Veda failed yet another med, resulting in yet another ER trip where we learned her labs had jumped over 1,200 points in less than a week!!!! Now, we're back at square one with anakinra 4 times a day and we were told this morning Veda will need to continue this plan for the next 6-9 months.
With a picc line comes weekly home care visits, very rare and expensive medications, huge fears of a line infection, doctor's visits, hospital visits, ER visits, picc line replacements and most importantly, for Mommy to be at home with her. Needless to say, our family has racked up quite the hospital bill and will continue to accrue them like this over the next year on a single income.
We would like to thank you for reading our story and appreciate your support whether that's a monetary donation (even $5 or $10 will help), a prayer for our family, or sharing this page. Thank you from the bottom of our hearts!
-The Schumachers
The link below has some great informant on SO-JIA
http://www.m.webmd.com/a-to-z-guides/systemic-onset-jra
A year ago Veda was diagnosed with a lung disease called pulmonary alveolar proteinosis (PAP) which has caused large amounts of inflammation in her lungs. That inflammation has the potential to turn into irreversible scarring. She is one of only 30-40 kids in the country to suffer from these. The two diseases complicate each other in ways we never dreamed possible.
We have had 4 trips to Cincinnati to see an amazing medical team that treats both conditions. The key is to keep Veda’s immune system so suppressed that it’s not strong enough to continue fighting her. As you can imagine, being maxed out on immunosuppressants comes with it’s repercussions. Her risk of infection is astronomical.
Currently Veda is hospitalized with her second episode of macrophage activation syndrome, a secondary life threatening complication of SJIA and PAP. She has received her 3rd PICC line (until her little body is stable enough for a port) and is undergoing many combinations of medications to try and bring her labs down to safe levels. If we’re unable to get these overactive cells to settle down in the next couple of days, we will be forced to start chemotherapy and actually kill the overactive cells in order to keep Veda safe.
The purpose of this gofundme and increases goal is to raise money to help with Veda’s medical bills, our ongoing trips to Cincinnati and follow up care. As always, thank you for taking the time to read our updates (no matter how bad I butcher them because I’m so exhausted when I type them) and for the continuous support you all offer. Whether that be monetary donations or prayers and good thoughts, we appreciate it!
-The Schumachers
updated 5.31.2018
It's taken our family 7 months to open up about our story and we are beyond relieved to start sharing. Let me rewind and start from the beginning..
October 2015 started out like any other month. Eden had just started kindergarten and we were busy preparing for one of our favorite holidays, Halloween. Suddenly Veda (then two and a half) started spiking high fevers and developed a very strange blotchy rash. At the same time she complained about some foot pain that we thought was unrelated.
After a few days of a 103-104 degree fever and a "hivey" looking rash we brought Veda in to her pediatrician. She did a physical exam and checked for some commom childhood illnesses like strep throat and influenza. She sent us home with a viral diagnosis. After two more days of the same fever and rash we brought Veda back in to her pediatrician who did another physical exam and this time a CBC. Veda's labs came back mildy abnormal but not abnormal enough to suggest anything besides a virus. Again, we went home with a viral diagnosis and some antihistamines to help the hives. Fast forward 4 more days, still running crazy fevers and still fighting this strange rash, I woke Veda up for her routine 3am dose of Tylenol and she was the hottest I have ever felt her. My heart dropped and panic took over when the thermometer said 106 degrees!!! At this point we headed to the ER. After explaining the previous 9 days and some IV fluids they sent us to Children's Hospital to rule out Kawasaki disease.
Within hours of arriving at Children's we were admitted and they began ruling out one disease after another. In the next 4 days we saw infectious disease, hematology, neurology, dermatology, oncology and went through a number of different procedures including a spinal tap, MRI, ultrasounds, echocardiogram, EEG, and then our worst nightmare, a bone marrow biopsy to rule out leukemia. It wasn't until they walked into our hospital room with a smile on their face telling us this definitely isn't leukemia, that I think I finally exhaled. The final specialist to walk through our door was rheumatology. She took one look at Veda and said, "this is classic JIA" juvenile idiopathic arthritis. I kept thinking, this isn't leukemia so we're ok. But we had no idea how 3 little letters could completely change life as we knew it.
After a couple days of a medication called anakinra and getting Veda's fevers controlled we were discharged with a new medication called actemra. Veda did good for the first few days but soon she started spiraling out of control...again. Over the next 3 weeks Veda slowly quit playing, then she quit using the toilet, and pretty soon she quit walking and eating.
We were admitted to Children's again and this time for nearly 10 days. She was started on anakinra soon after ariving and within two hours I caught her bouncing her leg to the music. It was from this moment I referred to anakinra as a miracle drug. After almost 2 weeks in the hospital and many high doses of our "miracle drug" Veda got a PICC line (basically a long term IV) placed so we could continue this very aggressive treatment at home. We were discharged and got home just in time for Christmas. God is so good!
The next 5 months were the most intense, uphill battle, filled with multiple set backs and lots of medications. We were doing a very high dose of 800mg of anakinra daily. Veda would start doing good, her labs would start trending down, so we would try and wean the anakinra only for her fevers to come back and her labs jump through the roof again. Her rheumatologist quickly added more meds to her regimen. Cyclosporine twice a day to help prevent her immune system from attacking itself, methotrexate weekly (which is actually a chemotherapy drug, but used in smaller doses can help reduce inflammation, and naproxen twice a day. This has been our plan since January. And with lab draws every week and close monitoring, Veda has been doing pretty good.
For the last two months we have been working on switching Veda from anakinra to canikinumab. This new medication would be an injection in her tummy every 4-8 weeks and works similarly to anakinra so we had hope. Sadly, that hope was taken away from us when Veda failed yet another med, resulting in yet another ER trip where we learned her labs had jumped over 1,200 points in less than a week!!!! Now, we're back at square one with anakinra 4 times a day and we were told this morning Veda will need to continue this plan for the next 6-9 months.
With a picc line comes weekly home care visits, very rare and expensive medications, huge fears of a line infection, doctor's visits, hospital visits, ER visits, picc line replacements and most importantly, for Mommy to be at home with her. Needless to say, our family has racked up quite the hospital bill and will continue to accrue them like this over the next year on a single income.
We would like to thank you for reading our story and appreciate your support whether that's a monetary donation (even $5 or $10 will help), a prayer for our family, or sharing this page. Thank you from the bottom of our hearts!
-The Schumachers
The link below has some great informant on SO-JIA
http://www.m.webmd.com/a-to-z-guides/systemic-onset-jra