"Now I see a rainbow, but what a storm it was..."
Levi's Mom Meet Levi:
Levi is the fourth child of Roseanne and Mark so trips to the doctor for a fever or sore throat were not uncommon for this family. With 3-month-old Levi fighting a higher than usual fever, his parents decided to bring him to Urgent Care for what they expected to be an ear infection. Doctors were immediately concerned and admitted young Levi to the hospital for additional tests.
After a sleepless night, doctors decided that Levi's condition required a higher level of care than the local hospital could offer. Upon hearing the news, Levi's mom felt numb. Before she knew it, she and her precious child were rushed to a waiting helicopter and being air-lifted to a Minneapolis Children's Hospital. After landing on the hospital roof, they were quickly escorted through the halls while nurses yelled "sick baby move." Roseanne vividly remembers everyone stopping and staring as they went running by. Within minutes Levi was on a ventilator and in a drug-induced coma. For four days Levi's parents sat in wonder and did nothing but pray and cry. No one had any answers to what was wrong.
A Rare and Frightening Diagnosis
After a multitude of tests, Levi was finally diagnosed with hemophagocytic lymphohistiocytosis (HLH). HLH is a rare disorder usually affecting infants and young children. While the exact cause is unknown, it is thought to be caused by a disorder of immune system regulation, which leads to the activation of infection fighting cells called histiocytes and lymphocytes. These cells normally travel throughout the body and destroy foreign material and fight infections. However, patients with HLH have too many of these activated histiocytes and they begin to accumulate in normal tissue and cause inflammation and damage to a variety of organs. The only known cure for HLH is a blood or marrow transplant.
Preparations began for Levi's umbilical cord blood transplant. In order to give this procedure the best chance to cure Levi's HLH, they needed to get the disease into remission. For the next four months Levi fought infections and endured surgeries and chemotherapy. Finally, the HLH went into remission and he was ready for his transplant at just seven-months-old.
Treatment at a World-Leading Hospital
The transplant alone is a relatively quick procedure and takes only 20 minutes to complete - Levi and his mother smiled the whole time; although, Roseanne's smiles were accompanied by tears of joy and relief. Levi received his umbilical cord blood transplant at the University of Minnesota Children's Hospital, Fairview. Physicians at this hospital are world renowned for their innovation in the field of blood and marrow transplants. They conducted the first successful pediatric bone marrow transplant in 1968 and the first successful double umbilical cord blood transplant in 2000.
Doctors and researchers at the U of M have paved the way in development of new standards of care using this procedure. In fact, the University of Minnesota recently completed their 5,000th blood and marrow transplant. Although thousands of transplants have been performed, the after-effects can be dangerous and sometimes deadly. Researchers are investigating different therapies and preparative regimens that may mitigate these after-effects and ultimately improve cure rates for diseases like cancer and Levi's HLH.
Hoping and Praying for their Healthy Baby to Return
Unfortunately, Levi experienced complications after his umbilical cord blood transplant. For weeks after the procedure he battled high blood pressure, vomiting, breathing issues and fevers, sometimes needing his bed stuffed with ice packs to help bring down the fevers. He was also diagnosed with veno-occlusive disease, a complication caused by the high doses of chemotherapy, which can cause the liver to shut down and result in death. His tiny body was invaded by tubes and lines, ventilators and dialysis machines, all necessary to mend this baby back to good health. Doctors worked diligently to maintain the delicate balance required to help Levi survive.
During the most trying of times, Roseanne would often look at pictures of Levi before he was hospitalized and think, "how can this be, where is my Levi?" Even though she spent nearly every waking hour with him, she missed him and yearned for the day when she could once again hold him, play with him and love him outside of the hospital walls, free of tubes and medication. That day came, a little more than two months after Levi's transplant; he was able to leave the hospital. Although not yet free of all tubes and medications, Roseanne and Levi moved into a tiny, temporary apartment near the hospital.
100 Days Later and a New Beginning
100 days after a blood or marrow transplant is often considered an important day. Typically, a spinal tap is done to measure whether or not the healthy, donated marrow has engrafted and become part of the transplanted patient’s body. Day 100 brought joy to Levi and his family. After receiving the test results, Roseanne wrote in her journal, "Levi is truly a miracle! The results from his spinal tap said NO disease at all --- ANYWHERE --- GONE!!"
One year after that dreadful diagnosis, Levi is home and thriving. The family recently returned from a restful trip to Florida where Levi thoroughly enjoyed watching the ocean and playing in the sand. Life is returning to normal and his family will never forget the journey they have been on, as Roseanne said, "It has been one year since my world changed. Now I see a rainbow, but what a storm it was..."
Story from: http://www.childrenscancer.org/stories-of-hope/kids-stories/levi.html
