Our beautiful granddaughter, Nataly Grace, was diagnosed with LCH (Langerhan’s Cell Histiocytosis) on 6/18/09. It is a very rare blood disorder that only affects 1 in every 200,000 people. After several months of Dr. visits for pain, rashes, and fussiness, a biopsy determined she had the disease.
6/2010 – Update – Nataly’s LCH has now progressed to High Risk
Systematic LCH with fibrous bone marrow. She has started salvage treatment of Ara-C and 2CdA chemotherapies.
2/2011 update – Nataly completed 6 rounds of salvage treatment. This treatment was very hard on her and she spent 8 weeks in the hospital from June-August with fevers up to 105 for many, many days. She was on a pain pump for excruciating tummy pain with boluses every 30 minutes for over a month. It was so very hard to watch her withdraw from all of these meds. Nataly was completely blood and platelet dependent for several months while we waited for the treatment to kick her fibrous bone marrow into high gear!!
The salvage treatment saved sweet Nataly and she is now on maintenance protocol as of October 2010. She is making her own platelets and has not had a blood or platelet transfusion since mid-October! She will be on 2 oral chemo medications, prednisone, and 1 infused chemo for another year. We pray for complete and total healing for this beautiful baby who has changed our lives forever!
October 2011 – Nataly completed her 1 year of maintenance and had her last chemo infusion on 9/27/10, followed by surgery to remove her port on 10/5/2011! We are so blessed that our God has totally healed Nataly! We count our blessings every day and look forward to watching Nataly grow into a healthy, happy, beautiful little girl!