04/17/2024
Faith is the sister of our max effort, hard hitting catcher Grace. Follow Faith’s journey here (All in Faith) and please keep her and her entire family in your prayers!!!
So many of you have been along side us as we have faced a very difficult season with our oldest child. In 2020 Faith was a healthy senior at Jefferson Co High School, when she began to notice her hair falling out by the handfuls.The inital diagnosis was Universal Alopecia. As the disease progressed, she lost body hair, eye lashes and eye brows. This was very difficult for a young woman which led to depression and self image issues. While she was going through this, she and her classmates were faced with schools being locked down due to Covid which took away their dream of graduation day.
She felt very uncomfortable being around people and struggled with synthetic wigs that were uncomfortable. A group of friends that saw this last year decided to raise funds to purchase a natural hair wig and professionally style it for her. This was life changing for Faith and she was back enjoying her life.
November 2022 she began having flu like symptoms. She went to her primary care physician five times between November 2022 to the end of December. She was prescribed medications but none seemed to help her. Then January 4, 2023, a PA ran some blood work and when she got the results back she called Amanda and told her to take Faith to the ER immediately due to "critical labs". We did not know anything at this point. We were admitted into the hospital for severe neutropenia.
After several days in the hospital we were discharged with the impression that her levels may have been "critical " due to the prior medications she had been prescribed the past 2 months to include all the steroids (which suppressed her immune system). About a month after being discharged 2 days after a Bone Marrow Biopsy we found ourselves returning to the ER with neutropenic fever. This time we were in the hospital for 17 days. Hematology, immunology, infectious disease, ENT, and I know more specialists also assessed Faith and could not figure out the underlying condition of why her neutrophils were 0.
Even a lymph node biospy was performed and both biopsies came back clear. We heard all kinds of possible diagnosis but none explained the neutropenic deficiency. Every test they could come up with was completed. For many days we had felt she may have had leukemia, lymphoma, or some rare form of Cancer but everything was coming back clear. Thank God! We figured it had to be some sort of Auto Immune issue since she had prior Auto Immune issues, but all the tests were clear.
Faiths immunogoblins (IGG, IGA and IGM) started to drop. Her Immunologist who has been in this field for 30+ years said she had never seen all of someone's immunogoblins drop like this.
Finally her mother and I did research and wanted to do genetic testing. At first the specialists were skeptical, but finally agreed. Due to the circumstances she had to have this done out of hospital and it took time for scheduling.. A hematolgist that specialized in Genetic testing took her case and confirmed to us if it is genetics he will find out even if he had to go through all 20k genes.
The Friday night that began Memorial Weekend, we received a phone call from the hematolgist. He stated that Faith had a gene called NFKB1 that has mutated. This is confirmation that Faith suffers from Autosomal Dominant Common Variable Immunodeficiency type 12. We started receiving IV-IG infusions every week from this point on to date at the cancer center. We also had to give Faith injections at home daily to help produce neutrophils. Levels never remained stable and we were constantly having to go have lab work and be seen by her hematolgist to keep her out of the Hospital.
This was our new normal that Faith would have to deal with for the rest of her life. January 16, 2024, Faith started to feel very ill running a 103.1 fever and we were back in the hospital. Faith was in the hospital for 8 days with no changes in her neutrophils that remained at 0 regardless of any treatments. We were told Faith must have a bone marrow transplant immediately, but we were allowed to go home until a second opinion could be achieved from the Mayo Clinic in Minnesota.
After consulting with the Mayo clinic, and was found that we had to proceed back into the hospital to have the bone marrow transplant. We are scared of the unknown and covet your prayers. Faith is on all kinds of medications to protect her until a bone marrow donor is matched.
We are so grateful for each and everyone of you that have continued to pray for her and reach out to check on her. Faith is 22 years old, a strong young woman standing on the promises of God. Her heart is that He will be glorified and use her testimony to help others.
After finding a 10 out of 10, we received disheartening news that the donor did not clear medically. As we went back to square one, our only option was for Mom to be the donor as she was a 7 out of 10 and both her siblings were only 6 out of 10. This will not be easy. Faith requires actual bone marrow from Mom which means Mom will have to have surgery and the bone marrow will be drilled out. Faith will still receive the Transplant as a Stem Cell Infusion. Once Faith is admitted, she will begin 7 days of chemo and one day of radiation in order to allow the transplant to be as if Mom is a 10 out of 10. Faith is so small and fragile already, the thought of this makes us so heartbroken to have to see her go through this. As of right now, we have been postponed again due to Faith having an infection. We believe everything happens for a reason and we know God has got this!
