We still did not understand at that moment the seriousness of the condition. Christina received treatment and was diagnosed with ITP on Monday and was expected to be discharged after a few days however it turned for the worst on Wednesday as all her blood levels kept dropping. An unscheduled bone marrow biopsy was completed and by Thursday morning we were prepping to get transferred to KU. The doctor started to look toward the diagnoses that we didn’t want to hear about, which was failure of the bone marrow.
We ended up at KU early in the afternoon and immediately saw the doctor whose preliminary results were not just Aplastic Anemia but Severe Aplastic Anemia(SAA). Talks began about Bone Marrow Transplant and cancer treatment. Another biopsy was completed, more blood work, and CT scans to rule out Cancer and confirm the diagnoses. We prayed and prayed that this was a dream and Friday morning our world came crashing down. It was confirmed that indeed she in fact had Severe Aplastic Anemia. No one knew what it was, we were all googling to find out what this disease was. It did not look good. Although she doesnt have Cancer, she is being treated like a Cancer patient due to it being a blood disorder.
Here is her story....They started treatment immediately and I was set to be in the hospital for at least an additional 4 days for inpatient treatment due to the severity of the treatment. Thank goodness, my body took the treatment I was able to be released on Wednesday August 9th. This was just the beginning of a new book. One chapter closed another one starting. Due to the severity of my condition I am confined to only my home and clinic for the next few weeks until my White blood count goes up. The hardest part of all this was not being able to be with my babies through this process. My daughter Gianna(11) was unable to visit me due to the strict restrictions at the hospital to keep me safe. However, Gianna is able to be in the home with me with strict precautions. I also have a son who is 13, Antonio. These restrictions have moved into the home as I am Neutropenic patient. I can only have proper cooked home meals. I am not allowed to eat out at least for the next 3 months. Visitors who are sick or have been sick in the last 2 weeks are restricted from visiting me. Visitors who were sick and flowers were turned away also at the hospital due to bacteria. We must clean, clean, and clean some more. Good hand washing, constant laundry and bathing of family in the home, and all the supplies to keep up with the cleaning. There are so many little details and things that we take for granted every day. The hardest part is not being able to give hugs and kisses to not only my children but to the ones that I love to show my appreciation of thanks. We are currently doing outpatient treatment until we move forward with the Bone Marrow Transplant.
This is just the beginning of a long road ahead. We have already been told that best case scenario timeline from beginning to end will be 1 year. Gulp.. Yes its true. We are asking for funds for things that we did not expect to have. Travel, supplies, medical treatment, utilites, caregiver expenses, and unexpected costs that will and keep coming up. I am not allowed to be by myself so I have to have someone with me at all times. This has been difficult to ask for funds as I do not like to ask for much however I know the toll it will take on my family including my siblings who are to be tested to be a bone marrow match. Weeks leading into the transplant, I have to begin Chemo-Therapy to prep me for the transplant itself. Many have already jumped in helping with the kids through this process and that also is a gift. Prayers are gifts, and calls and texts are gifts that no money can buy.
At this moment since it happened so fast in a weeks’ time we are uncertain of our needs as we are still trying to process and have normalcy for the nex few weeks before going back into the hospital where I will live for at least a month during transplant. THANK YOU in ADVANCE to those who contribute to this page especially those we may not know. There are not enough words to describe my thanks and gratitude to whoever you are reading this. (At this moment there is no known cause in what happened, it is a rare condition especially for a young healthy female, it was just so sudden with warning signs only a week before.)
Here is a link of the diagnosis description: (Video Available)
- Lucas Pfannenstiel
- Margo Hobbs
- LarryCowboy Wiezorek
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