Zavery’s parents have been traveling from Nemours Children Hospital in Orlando to their home in Cocoa, and our house in Melbourne where we have been helping look after their other two children. Zavery’s mother is a stay at home mom and Zavery’s father is currently not working because of everything go on with his son. I took to GoFundMe as a means to help them get through this difficult time and help them cover any unexpected medical bills not covered (like the bone marrow transplant), help with bills, and travel expenses to and from the hospital. Anything donated to our family and Zavery’s cause is greatly appreciated and incredibly needed and we thank you from the bottom of our hearts. We have started a Facebook Page to keep everyone who is and wants to follow us updated on Zavery and raise awareness about HLH( @savezavery). Please continue to read about Zavery and our journey so far.
Zavery Crockett, my grandson who is 4 months old, has been diagnosed with HLH which is a life threatening immunodeficiency. It all started Monday 01-16-2017 at 4:30 am he woke up with a spiked fever over 104 degrees and having seizures. He’s seizures went on for over 24 hours and had to be regulated with medications. Zavery was in critical condition at Nemours Children Hospital for two weeks without a diagnosis. We were told at the time he was emitted that it was unlikely he would survive. We all came together that night as a family and the Chaplin at the hospital preformed a baptism right there at Zavery’s hospital bed.
During the first week he was in multi organ failure and was told he would need a liver transplant. Zavery was being kept alive by round the clock care, medications, machines, and faith. We were waiting on many test to come back from the Mayo Clinic. The only thing we knew during the first week was that he tested positive for rhinovirus. On the 7th day after many tests later and based off his symptoms the Doctor decided to test him for genetic disorders and rear diseases. The tests were taken and sent off to the Mayo Clinic and another long week started of wanting for results.
During the second week Zavery was retaining fluid because his kidneys and liver were not working properly and fluid was starting to go into his lungs. A small procedure was done to relieve the fluid and it went well. The Doctors also started to wing him off medications (like the seizure medication and thankfully he has had no more seizures since) and an MRI was done to see if there was any damage done from the seizures. The MRI did show that he may have been without oxygen (stopped breathing) during one of his seizures for a very short time and that only time will tell if it will affect him mentally, but no major damage. By the end of week two Zavery was in critical but stable condition and was showing signs of slight improvement. The Results came back at the end of week two and we finally had a diagnosis: Hemophagocytic Lymphohistiocytosis or HLH for short.
The third week Zavery's Doctors had a meeting with our family to discuss his diagnosis, future treatment, and what we’re all in for on this long road to recovery. Recovery was such a huge relief to hear! Recovery is possible with the right treatment and a bone marrow transplant. That week Zavery started chemo therapy which is used to get his HLH cells under control and to achieve remission even though it’s not cancer, but that is just a temporary solution. A bone marrow transplant is what Zavery will need to fully recover (which we found out later is not covered by his insurance). He responded tremendously to the chemo therapy and was winged off even more medications and the breathing tube came out at the end of the third week. His kidney’s and liver both started functioning better and eventually on their own.
Over the fourth week Zavery continued twice a week chemo therapy and seemed to be better every day. His parents finally got to hold him for the first time since he was emitted and were able to start caring for him at the hospital (changing diapers). Zavery’s feeding tube was removed by the end of the fourth week and started bottle feeding. At that point we were told that he might be able to come home in a few weeks time. His parents then started preparing for him to come home: finding homes for pets they have, cleaning and bleaching everything, fixing things, and the list goes on. When Zavery comes home he will be a “bubble boy” so to speak. He won’t be able to go anywhere except to the Doctor (Nemours for treatment) and back once a week until he can get a bone marrow transplant. Luckly Zavery has two older sidling’s (ages 3 and 1) that have been tested for both HLH and to see if they are a match for bone marrow. We are currently awaiting those results.
Week 5 went the same as week 4 with continued chemo therapy and Zavery being more and more himself. A spinal tap was done at the beginning of the week and the results came back not showing any HLH cells indicating that the chemo therapy is working. Zavery came off of isolation that week and was able to be wheeled around the hospital in a wagon (it was the cutest thing ever). The Doctors then said if he continues to do well that he would get to go home in two weeks time. The frenzy to get the house ready and figuring out a game plan for when he comes home is currently in full swing with many things still needing to be done and many supplies needed. We still need medical supplies and as sterile environment as we can provide. Zavery’s parents were also informed that week that the insurance will NOT be covering the bone marrow transplant. Please help if you can and share our story with others and again anything donated to our family and Zavery’s cause is greatly appreciated and incredibly needed and we thank you from the bottom of our hearts.
Zavery Crockett, my grandson who is 4 months old, has been diagnosed with HLH which is a life threatening immunodeficiency. It all started Monday 01-16-2017 at 4:30 am he woke up with a spiked fever over 104 degrees and having seizures. He’s seizures went on for over 24 hours and had to be regulated with medications. Zavery was in critical condition at Nemours Children Hospital for two weeks without a diagnosis. We were told at the time he was emitted that it was unlikely he would survive. We all came together that night as a family and the Chaplin at the hospital preformed a baptism right there at Zavery’s hospital bed.
During the first week he was in multi organ failure and was told he would need a liver transplant. Zavery was being kept alive by round the clock care, medications, machines, and faith. We were waiting on many test to come back from the Mayo Clinic. The only thing we knew during the first week was that he tested positive for rhinovirus. On the 7th day after many tests later and based off his symptoms the Doctor decided to test him for genetic disorders and rear diseases. The tests were taken and sent off to the Mayo Clinic and another long week started of wanting for results.
During the second week Zavery was retaining fluid because his kidneys and liver were not working properly and fluid was starting to go into his lungs. A small procedure was done to relieve the fluid and it went well. The Doctors also started to wing him off medications (like the seizure medication and thankfully he has had no more seizures since) and an MRI was done to see if there was any damage done from the seizures. The MRI did show that he may have been without oxygen (stopped breathing) during one of his seizures for a very short time and that only time will tell if it will affect him mentally, but no major damage. By the end of week two Zavery was in critical but stable condition and was showing signs of slight improvement. The Results came back at the end of week two and we finally had a diagnosis: Hemophagocytic Lymphohistiocytosis or HLH for short.
The third week Zavery's Doctors had a meeting with our family to discuss his diagnosis, future treatment, and what we’re all in for on this long road to recovery. Recovery was such a huge relief to hear! Recovery is possible with the right treatment and a bone marrow transplant. That week Zavery started chemo therapy which is used to get his HLH cells under control and to achieve remission even though it’s not cancer, but that is just a temporary solution. A bone marrow transplant is what Zavery will need to fully recover (which we found out later is not covered by his insurance). He responded tremendously to the chemo therapy and was winged off even more medications and the breathing tube came out at the end of the third week. His kidney’s and liver both started functioning better and eventually on their own.
Over the fourth week Zavery continued twice a week chemo therapy and seemed to be better every day. His parents finally got to hold him for the first time since he was emitted and were able to start caring for him at the hospital (changing diapers). Zavery’s feeding tube was removed by the end of the fourth week and started bottle feeding. At that point we were told that he might be able to come home in a few weeks time. His parents then started preparing for him to come home: finding homes for pets they have, cleaning and bleaching everything, fixing things, and the list goes on. When Zavery comes home he will be a “bubble boy” so to speak. He won’t be able to go anywhere except to the Doctor (Nemours for treatment) and back once a week until he can get a bone marrow transplant. Luckly Zavery has two older sidling’s (ages 3 and 1) that have been tested for both HLH and to see if they are a match for bone marrow. We are currently awaiting those results.
Week 5 went the same as week 4 with continued chemo therapy and Zavery being more and more himself. A spinal tap was done at the beginning of the week and the results came back not showing any HLH cells indicating that the chemo therapy is working. Zavery came off of isolation that week and was able to be wheeled around the hospital in a wagon (it was the cutest thing ever). The Doctors then said if he continues to do well that he would get to go home in two weeks time. The frenzy to get the house ready and figuring out a game plan for when he comes home is currently in full swing with many things still needing to be done and many supplies needed. We still need medical supplies and as sterile environment as we can provide. Zavery’s parents were also informed that week that the insurance will NOT be covering the bone marrow transplant. Please help if you can and share our story with others and again anything donated to our family and Zavery’s cause is greatly appreciated and incredibly needed and we thank you from the bottom of our hearts.