IndiaPost.com - Nirali Naik - We will never know her sacrifice

Tonight, many sick patients await the marrow do nor that will save their life. The prime obstacle in reciting marrow donors is one's concern for oneself - the time sacrifice and mild discomfort that comes from donating bone marrow.

Too often we are unwilling to make even the smallest sacrifice to save a life. What is lost in the discussion on marrow donation is what remains hidden - not the mild suffering of the donor, but the tremendous suffering of those who wait for them. Were we more familiar with their struggle, our own inconveniences in donating marrow would be put in perspective, and we would be much more likely to take this small step to save a life. 18 month old Nirali was diagnosed with Acute Lymphoblast Leukemia on July 26, 2006.

Her struggle highlights the comparatively small sacrifice of the donor, bringing perspective to the decision to donate and reminding us all that the true sacrifice is that of the sick patients in need of a donor. When Nirali was just one year old, she became afflicted with high fever and was brought to hospital. That day she was diagnosed with leukemia. Chemotherapy began immediately, and so began a struggle that eclipses anything most of us will ever face. Immediately the doctors warned Nirali's family of one truth of chemotherapy: before it can get better, it has to get worse.

They were warned of what would be Nirali's rapidly declining health over the first two weeks, and right away they were seeing it first hand. Nirali began with severe nausea and loss of appetite. Confined to a hospital bed, Nirali's parents watched as the side effects of chemo mounted. Nirali was first placed on medication for a rising heart rate.

Pain medications followed. She began coughing up blood, was too weak to walk or get out of bed, had heavy vomiting, diarrhea, high blood pressure, and mouth sores. All of this was described by the doctors as "normal". The accumulating side effects of chemotherapy were confusing and difficult to read. Because Nirali was too young to talk, her parents could only see her general discomfort without knowing what ailed her.

Chemotherapy was proving to be a heart wrenching guessing game as Nirali's health deteriorated. And then came the event that could turn everything around: her transplant. While Nirali has not found a bone marrow match from a donor, she has a cord blood match. Cord blood is another way a patient who needs a bone marrow transplant can be saved.

The small amount of blood inside the umbilical cord can sometimes have enough blood forming cells necessary to help someone who needs a transplant. The blood stem cells are usually only enough for children. If you or someone you know is pregnant and delivering a baby in the next few weeks, consider donating the umbilical cord blood.

The stored cord blood is called a cord blood unit. The chemotherapy treatments until this point had been in preparation of this transplant. The standard transplant uses very strong treatment that destroys your diseased cells. It also destroys your immune system so it will not attack the donated cells. After this regimen, blood-forming cells are introduced through a tube that goes into a vein in your chest.

The transplanted cells move into the spaces inside your bones where they create new marrow. A cord blood transplant is successful when the donated cells you received for your transplant start to grow and make new blood cells. This is called engraftment. Achieving engraftment is an important milestone in transplant recovery. Until that hoped-for day and beyond, Nirali would continue to suffer from the after-effects of chemotherapy. Her persistent skin rash worsened. She was so itchy and scratched so hard, her parents had to cover her hands with mittens and tape it up so her skin wouldn't bleed.

Constant itching gave her difficulty sleeping and she was treated with heavy medication. Her voice became coarse, she had difficulty speaking, and her lips were cracked and bled. One of the more cruel ironies of the treatment process is a treatment feedback loop: every side-effect of chemotherapy required medication, and every medication brought with it more side effects, many of which required their own medications. Nirali was taking numerous pills, taking the good with the bad as her family hoped for more benefits than negatives. All the while, they wait for the signs that signal the first steps to recovery.

There were small successes on the way. Nirali one day having enough energy to walk was something to celebrate. As was the day she received permission to leave the ward, and was taken to the clinic next door to see the fish tank. And on February 2, 2007, Nirali has her third consecutive day of ANC counts over 500 - a significant and much awaited milestone that marks an early sign of engraftment. And with her dramatic improvement, on February 16, Nirali was released from the hospital. And for every step forward in the recovery process, it seems there is one back. On day 55 after the transplant, some bad news: Nirali's blood tested positive for CMV Cytomegalovirus, a condition which can affect her lungs.

Then, after a long stretch of recovery, Nirali's condition was taking even more turns for the worse. - since the news of CMV in her blood, fluid buildup around the heart was discovered and Nirali was readmitted to the hospital. This is where Nirali sleeps tonight, not knowing if tomorrow brings healing or decline. For Nirali, the future is unwritten. Most of us will never know her sacrifice, but we can make a small one of our own. For children like Nirali, marrow donation is their only hope. When one remembers the suffering of Nirali, our own excuses for inaction fade to dust, and we are confronted with a duty to help.

We can not save Nirali with our tears, only our deeds. Maybe we can all do a good deed in her honor. Sign her guest book at http://savenirali.com/nirali/Main/ShowSupport (Content provided by Asians for Miracle Marrow Matches and www.savenirali.com)