- J
Hi, my name is Mel and I am Aubrileyna’s mom!
Aubri has been diagnosed with HLH (Hemophagocytic Lymphohistiocytosis)Disease. HLH is a severe systemic inflammatory syndrome that can be fatal. This syndrome can sometimes occur in normal people with medical problems that can cause a strong activation of the immune system, such as infection or cancer. HLH in these settings is called Secondary HLH. Which is what Aubri has. In her case, a complication after COVID-19. Back in December of 2020, Aubri had broke out in a fever so she was tested for COVID and her test had came back positive. We were told she had to quarantine until December 21st as long as she was free of symptoms but, unfortunately Aubris fever didn’t go anywhere and we were told that sometimes the symptoms can linger after COVID so we gave it a week and her fever still didn’t go ease up so back to the Doctor we went and he thought maybe she caught an infection or early stage of Pneumonia from COVID so he prescribed her a 3 day and 10 day antibiotic. At first we thought she was getting better because her fever started to stretch out but she finished both antibiotics and she still had her fever so we took her back to the Dr for the 3rd time, which was on a Monday, and he then thought maybe she had something viral and said if the fever didn’t go away by Wednesday to take her back and he could test her for something viral. Wednesday came around and Aubri still had her fever, a rash behind her neck, swelling in her face and dark circles around her eyes so I called the doctors office and they said they didn’t have time to see Aubri but that the doctor said he could do labs to test for Mono but that if it was mono there is nothing he can do. By this time we were extremely frustrated so I told them I wanted her blood levels checked that they should be trying to test for more than something viral so they agreed so we took Aubri in to do labs an within 45 minutes of leaving the clinic we get a call from her doctors nurse telling me that we needed to take Aubri to Sanford Children’s Hospital in Fargo immediately and that her blood work was showing signs of inflammation in her body. At first, when we got to the Fargo hospital, they thought she had something called MIS-C, which is multisysten inflammatory syndrome in children, a complication after COVID that they were seeing in children her age. But, after doing an Ecco, ultrasound and MRI on Aubri, they didn’t see any heart conditions or swelling which is a symptom of MIS-C, but, they discovered that her spleen and liver were enlarged which is a symptom of HLH. In order to diagnose her, they had to run other test and send some of her blood to Cincinnati to be tested. After ruling out cancer, tumors and infections they were sure she has HLH disease. So what happened was when she got COVID, her immune system turned on to fight off her illness and when she should have been done and over with COVID her immune system did not turn off... instead her immune system went into overdrive which is what caused her ferritin levels to spike to 40,000 Which caused the inflammation in her body. The normal ferritin level would be around 400-800. The treatments for her diagnosis is chemotherapy and a strong steroid that will weaken her immune system. Doctors told us that she would need to get 8 weeks of treatments and that she should get a dna test to determine whether this HLH was genetic or not and if it was she would then need to get a stem cell transplant. She got the dna testing done and it came back negative but when they tried to taper down on the steroid she broke out in a fever and her ferritin levels spike back up to 30,000 so doctors decided to go back up in her steroid and she seemed to get better. The fact that the HLH disease came back when trying to take her off of treatments showed that the disease was not going to go away like they had hope considering the fact that it is not genetic. So, her team of doctors decided the next step would be for Aubri to get a stem cell transplant. They said the best donor would be a full blood sibling. Aubri has one full blood sibling, her sister Millie. Whom they have tested and unfortunately Millie is not a match. So, they have sent Aubri’s information to the National Bone Marrow Database to see if they can find a match for her but after completing her HLA test kit they’ve found that she has some rarities with her blood mainly because of the fact that Aubri is half Hispanic they think there is a slim chance they will find someone that could be a potential donor. So, they decided that they could do something called a haplo transplant. Which is where they test mom and dad to see if we’re at least a half match considering the fact she gets half her genes from mom and half her genes from dad. They have sent us our test kits which we have already sent back. If neither of us are a match for her then her last option would be to get a transplant using stem cells from an umbilical cord which is very risky and can come with quite a bit of complications. On top of everything she is going through, they have recently discovered that she has been having high glucose numbers. Unfortunately Aubri has been put on insulin to try to control her blood sugar. She gets 4 insulin shots a day and this is all because of the steroid she is on which has made her gain 20lbs since her diagnoses 3 months ago. She struggles to walk and she can hardly go up the stairs because of her weight and also because of the steroid she is on, weakens the body instead of strengthening it like other steroids do. They have recently started Aubri on a new medication/chemo that is specifically for HLH disease and for patients who have completed treatment that did not work to keep it from coming back. We now take Aubri to Fargo for her new chemotherapy every Monday and Friday and they are going to start tapering down on the steroid again until they can get her off of it and hopefully her blood sugar and weight normals out.
We were informed that if Aubri gets stem cells donated from someone, we will have to travel to Rochester, MN which is about a 5-6 hour drive from where we live. If Aubri gets stem cells from an umbilical cord we would then have to go to Minneapolis, MN which is a 4 hour drive from us. Once we go down to one of these locations for the transplant we will then need to be there for over three months (100 days after the transplant). Aubri will be in the hospital for the first month then we would need to stay in a hotel for the remainder of the time. At first we thought we would be going to the Ronald McDonald House but because of COVID there’s a waiting period and her dad would not be able to visit or switch out with me or my mother if need be. So, they said it’d be best if we stayed in a hotel for the remainder of the time. It has been a tough 3-4 months! Her grandma took time off of work to give her around the clock care and now I have taken a step back from working while grandma went back to work until it is time for Aubri’s transplant. Both me (Aubri’s mom) and my mother will be the ones staying with Aubri in Rochester. Which will be extremely difficult being away from the kids we both have at home! This has taken a toll on our family.. mentally, emotionally, physically and financially! And this is all because of COVID.
Funds will be used to help cover any medical bills and prescriptions that her insurance does not cover, gas, hotel stays, food and meals during our stay after her transplant etc.
Anything that is donated, is greatly appreciated!!
Aubri has been diagnosed with HLH (Hemophagocytic Lymphohistiocytosis)Disease. HLH is a severe systemic inflammatory syndrome that can be fatal. This syndrome can sometimes occur in normal people with medical problems that can cause a strong activation of the immune system, such as infection or cancer. HLH in these settings is called Secondary HLH. Which is what Aubri has. In her case, a complication after COVID-19. Back in December of 2020, Aubri had broke out in a fever so she was tested for COVID and her test had came back positive. We were told she had to quarantine until December 21st as long as she was free of symptoms but, unfortunately Aubris fever didn’t go anywhere and we were told that sometimes the symptoms can linger after COVID so we gave it a week and her fever still didn’t go ease up so back to the Doctor we went and he thought maybe she caught an infection or early stage of Pneumonia from COVID so he prescribed her a 3 day and 10 day antibiotic. At first we thought she was getting better because her fever started to stretch out but she finished both antibiotics and she still had her fever so we took her back to the Dr for the 3rd time, which was on a Monday, and he then thought maybe she had something viral and said if the fever didn’t go away by Wednesday to take her back and he could test her for something viral. Wednesday came around and Aubri still had her fever, a rash behind her neck, swelling in her face and dark circles around her eyes so I called the doctors office and they said they didn’t have time to see Aubri but that the doctor said he could do labs to test for Mono but that if it was mono there is nothing he can do. By this time we were extremely frustrated so I told them I wanted her blood levels checked that they should be trying to test for more than something viral so they agreed so we took Aubri in to do labs an within 45 minutes of leaving the clinic we get a call from her doctors nurse telling me that we needed to take Aubri to Sanford Children’s Hospital in Fargo immediately and that her blood work was showing signs of inflammation in her body. At first, when we got to the Fargo hospital, they thought she had something called MIS-C, which is multisysten inflammatory syndrome in children, a complication after COVID that they were seeing in children her age. But, after doing an Ecco, ultrasound and MRI on Aubri, they didn’t see any heart conditions or swelling which is a symptom of MIS-C, but, they discovered that her spleen and liver were enlarged which is a symptom of HLH. In order to diagnose her, they had to run other test and send some of her blood to Cincinnati to be tested. After ruling out cancer, tumors and infections they were sure she has HLH disease. So what happened was when she got COVID, her immune system turned on to fight off her illness and when she should have been done and over with COVID her immune system did not turn off... instead her immune system went into overdrive which is what caused her ferritin levels to spike to 40,000 Which caused the inflammation in her body. The normal ferritin level would be around 400-800. The treatments for her diagnosis is chemotherapy and a strong steroid that will weaken her immune system. Doctors told us that she would need to get 8 weeks of treatments and that she should get a dna test to determine whether this HLH was genetic or not and if it was she would then need to get a stem cell transplant. She got the dna testing done and it came back negative but when they tried to taper down on the steroid she broke out in a fever and her ferritin levels spike back up to 30,000 so doctors decided to go back up in her steroid and she seemed to get better. The fact that the HLH disease came back when trying to take her off of treatments showed that the disease was not going to go away like they had hope considering the fact that it is not genetic. So, her team of doctors decided the next step would be for Aubri to get a stem cell transplant. They said the best donor would be a full blood sibling. Aubri has one full blood sibling, her sister Millie. Whom they have tested and unfortunately Millie is not a match. So, they have sent Aubri’s information to the National Bone Marrow Database to see if they can find a match for her but after completing her HLA test kit they’ve found that she has some rarities with her blood mainly because of the fact that Aubri is half Hispanic they think there is a slim chance they will find someone that could be a potential donor. So, they decided that they could do something called a haplo transplant. Which is where they test mom and dad to see if we’re at least a half match considering the fact she gets half her genes from mom and half her genes from dad. They have sent us our test kits which we have already sent back. If neither of us are a match for her then her last option would be to get a transplant using stem cells from an umbilical cord which is very risky and can come with quite a bit of complications. On top of everything she is going through, they have recently discovered that she has been having high glucose numbers. Unfortunately Aubri has been put on insulin to try to control her blood sugar. She gets 4 insulin shots a day and this is all because of the steroid she is on which has made her gain 20lbs since her diagnoses 3 months ago. She struggles to walk and she can hardly go up the stairs because of her weight and also because of the steroid she is on, weakens the body instead of strengthening it like other steroids do. They have recently started Aubri on a new medication/chemo that is specifically for HLH disease and for patients who have completed treatment that did not work to keep it from coming back. We now take Aubri to Fargo for her new chemotherapy every Monday and Friday and they are going to start tapering down on the steroid again until they can get her off of it and hopefully her blood sugar and weight normals out.
We were informed that if Aubri gets stem cells donated from someone, we will have to travel to Rochester, MN which is about a 5-6 hour drive from where we live. If Aubri gets stem cells from an umbilical cord we would then have to go to Minneapolis, MN which is a 4 hour drive from us. Once we go down to one of these locations for the transplant we will then need to be there for over three months (100 days after the transplant). Aubri will be in the hospital for the first month then we would need to stay in a hotel for the remainder of the time. At first we thought we would be going to the Ronald McDonald House but because of COVID there’s a waiting period and her dad would not be able to visit or switch out with me or my mother if need be. So, they said it’d be best if we stayed in a hotel for the remainder of the time. It has been a tough 3-4 months! Her grandma took time off of work to give her around the clock care and now I have taken a step back from working while grandma went back to work until it is time for Aubri’s transplant. Both me (Aubri’s mom) and my mother will be the ones staying with Aubri in Rochester. Which will be extremely difficult being away from the kids we both have at home! This has taken a toll on our family.. mentally, emotionally, physically and financially! And this is all because of COVID.
Funds will be used to help cover any medical bills and prescriptions that her insurance does not cover, gas, hotel stays, food and meals during our stay after her transplant etc.
Anything that is donated, is greatly appreciated!!