Livy Strong - HLH
Donation protected
For updates:
http://catchingupwithceecee.blogspot.com/
Original Post:
For months, Alivia has been in and out of the hospital, has had weekly labs and is going through the ups and downs of figuring out what medication will work best for her. This is only the beginning of her battle. On December 05, 2018 Alivia, (almost 8 months old) was diagnosed with Primary HLH Syndrome. HLH is a rare, aggressive and nasty disease. To survive, Alivia needs a bone marrow transplant.
Her parents and older sister have been tested for compatibility. Results show they are only 50% compatible. This means Alivia will need to rely on a donor for her bone marrow transplant. Once a donor is selected, the donor will go through the procedure while Alivia prepares to receive the bone marrow. The preparation for the bone marrow transplant includes chemotherapy along with many other medications in hopes to completely suppress Alivia immune system. After she receives the transplant, the recovery time will depend on how Alivia’s body responds.
Alivia’s parents, Cassandra and Oliver, will also be traveling to Cincinnati children’s hospital after the holidays for a consultation as this is the only hospital in the US that specializes in HLH. If they decide it is best for Alivia to undergo treatment in Ohio and Cassandra will need to relocate as the minimum recovery time for Alivia is expected to be around 8-12 months.
Cassandra is a stay at home mother and Oliver supports the family by working full time. As you can imagine, he will be missing many days of work to support Alivia and Cassandra through this tough time all while their bills will still need to be paid at home.
Consider supporting this family by donating, sending thoughts and prayers, as well as registering as a bone marrow donor join.bethematch.org. Spread the word about HLH. Alivia’s main symptom was a fever. That’s the only clinical sign she had. If your baby or a baby you know isn’t getting better after a cold or virus, advocate and push for the medical team to do simple blood tests that would help in detecting any rare disease or disorder. HLH is rare because it is undiagnosed and usually isn’t caught until it’s too late! Many doctors and medical professionals have no idea what it is or what to look for! Feel free to follow Cassandra’s blog as well. She will be updating as much as she can throughout all of this. Catchingupwithceecee.blogspot.com
A sincere thank you to everyone for supporting the Colin family through this tough time.
https://join.bethematch.org/s/?language=en_US
http://catchingupwithceecee.blogspot.com/
http://catchingupwithceecee.blogspot.com/
Original Post:
For months, Alivia has been in and out of the hospital, has had weekly labs and is going through the ups and downs of figuring out what medication will work best for her. This is only the beginning of her battle. On December 05, 2018 Alivia, (almost 8 months old) was diagnosed with Primary HLH Syndrome. HLH is a rare, aggressive and nasty disease. To survive, Alivia needs a bone marrow transplant.
Her parents and older sister have been tested for compatibility. Results show they are only 50% compatible. This means Alivia will need to rely on a donor for her bone marrow transplant. Once a donor is selected, the donor will go through the procedure while Alivia prepares to receive the bone marrow. The preparation for the bone marrow transplant includes chemotherapy along with many other medications in hopes to completely suppress Alivia immune system. After she receives the transplant, the recovery time will depend on how Alivia’s body responds.
Alivia’s parents, Cassandra and Oliver, will also be traveling to Cincinnati children’s hospital after the holidays for a consultation as this is the only hospital in the US that specializes in HLH. If they decide it is best for Alivia to undergo treatment in Ohio and Cassandra will need to relocate as the minimum recovery time for Alivia is expected to be around 8-12 months.
Cassandra is a stay at home mother and Oliver supports the family by working full time. As you can imagine, he will be missing many days of work to support Alivia and Cassandra through this tough time all while their bills will still need to be paid at home.
Consider supporting this family by donating, sending thoughts and prayers, as well as registering as a bone marrow donor join.bethematch.org. Spread the word about HLH. Alivia’s main symptom was a fever. That’s the only clinical sign she had. If your baby or a baby you know isn’t getting better after a cold or virus, advocate and push for the medical team to do simple blood tests that would help in detecting any rare disease or disorder. HLH is rare because it is undiagnosed and usually isn’t caught until it’s too late! Many doctors and medical professionals have no idea what it is or what to look for! Feel free to follow Cassandra’s blog as well. She will be updating as much as she can throughout all of this. Catchingupwithceecee.blogspot.com
A sincere thank you to everyone for supporting the Colin family through this tough time.
https://join.bethematch.org/s/?language=en_US
http://catchingupwithceecee.blogspot.com/
Organizer and beneficiary
Jessica Miller
Organizer
Norway, IA
Cassandra Colin
Beneficiary