Carli was hospitalized at St.Joseph's Children's Hospital in Tampa, Florida on July 19, 2008 and was diagnosed with Acute Lymphoblastic Leukemia(ALL) on July 22, 2008. Since then Carli has not been outside of hospital care. The following is a rough summary of some of the events she has been through.
Although Carli responded well to the initial chemotherapy treatments, she quickly developed complications starting with two episodes of seizures and later a perforated bowel. Rushed to the operating room and we were told in what would be the first many times that she would not survive. Carli lost most of her bowel and has since suffered from multiple infections. Later Carli's weakened body was aggressively attack by a fungal disease Mucormycosis, (usually simply called Mucor). Mucor attacked stomach, gastro- intestinal tract and other organs. During this battle Carli's life was again hanging on by thread.
We did not understand the nature of this disease and were horribly surprised when in September 08 Carli had a sudden onset of bleeding. Literally gushing blood, she was this time rushed to the emergency interventional radiologist where the doctors learned she had pseudo aneurysm present on her external iliac artery from her right leg. What that means is the mucor ate a hole in a major artery. Over twenty units of blood product and a plug in her artery to stop the blood flow, again Carli miraculously survives.
The mucor progressed into her organs and pneumonia began to fill her lungs. We were told multiple times Carli was passing away and her body was shutting down. When Carli was at the point of death, her body did a complete turn. None of the doctors have an explanation. You can read the Blog updates to get a better idea past of what we were going through.
The road continued to be rocky, but Carli appeared to finally start making slow progress. Then after 11 months in St Joseph Hospital, (9 of them in the intensive care unit), and after multiple reports meeting to prepare ourselves and our family for her demise, Carli appeared to be improving. In April 09 we were brought to another big decision. Test indicated she still had mucor in her right hip. The right kidney was also damaged causing recurrent urinary tract infection. In June 09 Carli was transfer to Tampa general Hospital for a surgery to remove the fungal mass and repair the bowel, removing the kidney if needed.
The surgeon found her condition to be much worse than he expected. The fungal mass removed, but repairing her bowel was not possible. In addition he was unable remove her kidney as he had planned. Due to her multiple surgeries, her kidney had eroded into veins and artery. She would likely bleed to death if it was removed. And finally, they were simply unable to even close Carli’s stomach. Once more the doctors attempted to prepare us for her eminent death. Again the advise of some was to make arrangement for Hospice care so Carli could did quietly at home. We disagreed.
Carli remained in the intensive care unit for over a year. Her life staying dangerously on edge. Many infections. Many episodes of difficult to control bleeding. She regularly required many units of IV fluids, blood transfusions, platelets, and FFP (blood clotting agent).
She was not expected to live. At a couple of points we were even counseled to prepare for her impending death. Yet in January of 2010 Carli again began to show significant improvement and was finally transfer to the regular unit. She continued to have episodes of infection and bleeding requiring her to again be taken to the intensive care unit, but usually after 2 or 3 days she was able to return to the regular unit.
Presently, Carli has remained hospitalized and for over two and a half years. Neither her stomach nor her bowels function. Surgeons have been unable to close her wound since her last surgery on 6/4/09. Carli is still in remission of cancer and free of the mucor. On the beginning of December 2010 Carli suffer a bilateral femur head fractures which causing a lot pain on her hip, knees, and legs. On 1/4/11 Carli was transfer to Nebraska Medical Center to be evaluated for surgery either to repair her bowel or undergo a bowel transplant.
We are grateful for your faithful prayers and involvement. We request that you please continue to lift Carli and our family up in prayer. Our prayer is for God continue to give her and our family spiritual, physical and emotional strength. That He would give wisdom and guidance to the medical team in Nebraska.
We Pray God will complete the good work He has started in her.
We have seen God’s power multiple times and we continue to believe in God for his healing power. He is still the God of Hope and Mercy.
For a more recent update on Carli’s status go to the page "Carli's Weekly updates."