This website was conceived by Aleks Nikolich whose seven year old daughter,Anna, was given a miracle of her own. Aleks wanted to give back to Dr. Walsh in a gesture of thanks and support for all of his research discoveries and interventions. This website is the Nikolich’s family way of saying “thank you,” and giving others the chance to do the same.
My daughter, Anna was diagnosed with high-risk acute lymphocytic leukemia (ALL) in February of 2007. You never think something like this will happen to your child. They told us that Anna had an 80% chance of survival and that the treatment (chemotherapy and radiation therapy) would take 2-1/2 years. My wife Laura and I were totally devastated. Anna’s life changed and so did ours. Anna soon lost all of her hair and experienced the nausea and other complications caused by the toxicity of the chemo. It was terrible.
Then on February 11, 2008 Anna was stricken by a stroke. Lightning struck twice.
The doctors at the hospital (Children’s Hospital of Wisconsin) thought that it may have been a clot that caused her stroke (one of the chemo drugs she was on can cause clots). Shortly after Anna was admitted though, Anna developed a high fever of 103F and it persisted for over two weeks. The doctors at the hospital ran a multitude of tests, but could not determine the cause. In desperation, I iced her head 24 hours a day in an attempt to keep her comfortable. Finally, her doctor ordered a CT scan and found that many large abscesses (puss sacs) had formed in her brain. I will never forget the doctor telling us “it’s not a death sentence, but…”.
The hospital’s top neurosurgeon (and one of the top in the country) was recruited by Anna’s oncologist to perform surgery on Anna. He partially cleared out the largest abscess about the size of a egg from Anna’s brain. The labs came back with a positive sign of Aspergillus in the biopsy. Aspergillus is a fungus that is found floating around everywhere, but our healthy immune systems prevent it from entering our bodies. Many bone marrow transplant and HIV-infected individuals develop this fungus in their lungs as a result of their poor immune systems. Many of those cases are lethal, but there is a reasonable chance for curing them if it is caught early enough. Anna not only had it in her lungs, but then it traveled to her brain causing the stroke. Then I learned that a fungal infection in someone’s central nervous system is normally fatal.
Anna’s oncologist was feverishly searching for approaches that could save her life. Although most of the large abscess was removed, there were still several other abscesses in Anna’s right hemisphere. His initial recommendation was a complete removal of the right side of her brain, as he was concerned that the fungus could spread and kill Anna. His top priority, as was mine, was to keep Anna alive. The hemispherectomy is the generally accepted medical response for this type of infection. Since a month had already gone by and Anna still could not use her left leg or arm and lost sight in the left half of each eye, the consensus was that there would be no increase in physical deficits. This discussion just made my wife and I sick to our stomachs – we were totally devastated wondering what would be left of Anna and her personality after this.
Unsatisfied with this approach, Anna’s oncologist continued to search for alternatives to the hemispherectomy. It was at this point that he contacted Dr. Walsh to get his opinion on what other options were available for treating the fungal infection. Dr. Walsh’s work with Dr. David Margolis at CHW and his bone marrow transplant kids was legendary at the hospital. Our oncologist wasn’t sure that Dr. Walsh was available to help. Thank goodness he was!
Dr. Walsh told Anna’s oncologist that his research had shown that Aspergillis in the brain could be successfully treated with medical therapy (“drugs” in layman’s terms) in conjunction with targeted surgical therapy. The larger abscesses still needed to be surgically removed, but the smaller ones could be treated with IV anti-fungal medications. The medicine would keep the abscesses in check and help them get smaller over time. This was incredible news for our family! Anna had a chance to live and keep the right side of her brain. We had hope!!!
Per Dr. Walsh’s recommendation, Anna was put on a daily regimen of a relatively new antifungal drugs. Anna wouldn’t have had a chance without these new drugs as the traditional antifungal drugs all have problems getting to the brain. He also guided her medical team to apply the proper dosage of this drug (his research found that many children quickly metabolized the drug leading to underdosing and ultimately death from the fungus). While all of this was going on, I spent a lot of time researching what I could on fungal brain infections. I had to apply some research skills from my graduate work at MIT that were a bit rusty but still there. Almost every paper and journal article that I found on Aspergillis in the brain had Walsh as an author. All the papers from the 1990’s discussed autopsies of children that had this infection. All the papers that Dr Walsh authored after 2000 discussed his continued success in beating this infection and increased survival rates.
After the surgery and the new medicine, the miracles started to happen. About a week after the large abscess was drained, Anna started to have trace movement in her upper left leg. Each day, she started having a bit more. Because we were able to preserve the right side of her brain, Anna was able to regain voluntary movement of her paralyzed leg.
Anna was discharged from the hospital in late March after 40 days in the hospital. The remaining abscesses in her brain were still there, but not getting any larger — the medicine was working! She was so happy to be back in her own bed but also sad that she could not walk or use her arm. We remained positive and Anna set a goal to walk on her own by her 7th birthday on May 31st. Most of her caregivers didn’t think that it would be possible since it was only 10 weeks away, but they politely told Anna that it was a nice goal to have.
It was a bit crazy from April to June as Anna required several targeted brain surgeries to drain abscesses and clear blockages caused by them (see the big bump on her head in the picture to the left). In the last brain surgery, the neurosurgeon carefully removed a puss-filled sac about the size of an egg that had reformed in that area. The surgery was successful and the sac was sent for analysis. Aspergillus was found in the core of the sac, but none was found to be alive. The original surgery back in March didn’t get it all, but Dr. Walsh’s antifungal therapy was successful in helping Anna kill off the remaining Aspergillus.
Now for some wonderful news! By her 7th birthday (3 months after the stroke), Anna walked on her own at her birthday party attended by all of her 1st grade classmates. Anna continues to improve and her left leg continues to get stronger every day. Her left arm is also getting stronger and she can use it from the elbow up. She is more energetic than ever and is starting to reengage in her favorite hobby again – drawing. She plays dolls with her sister and swings on our swing set in the backyard. All of this would not have been possible if we couldn’t stop the Aspergillus from spreading or if we went through with the hemispherectomy.
In August 2009, Anna ended her maintenance chemotherapy. She is currently attending the 3rd grade and working hard to make up the nearly 2 years of school she missed. Anna never would have made it this far without Dr. Walsh’s help and the great staff at CHW.
It is because of his laboratory investigations and clinical research that Anna is on the road to recovery. Dr. Walsh’s research discoveries have saved Anna’s life. My wife and I are grateful beyond words for all the work he has done. Thank you Dr. Walsh for your dedication and passion. I sincerely hope that Dr. Walsh and his associates continue to discover and develop new medical advances that will ultimately help others to live longer or to survive a devastating infection.
Aleks Nikolich, Anna’s Dad