At the young age of only 16 months of age Micah Peckels Quirk has shown the world what amazing strength and determination he has and he continues to amaze us all while trudging forward in his journey back to health. His strength is truly an inspiration to anyone who knows him.
At 13 months of age Micah developed a fever that eventually lead into a very serious diagnosis. It was assumed that the fever was due to a harmless virus or to teething. The fevers averaged between 101 and 103 degrees and were well managed with acetaminophen. Micah's parents were in contact with their pediatrician and neither were initially concerned. Micah did not have a runny nose, cough or sore throat but some molars seemed to be coming in so it made sense to assume that the fevers were related to teething. After a week of fevers, Micah's parents brought him in to see the doctor. Micah's doctor ordered some blood work. By this time, Micah’s gums had become red and inflamed and he was extremely tired. The blood work showed that Micah had an extremely low platelet count as well as abnormal liver functioning. Micah's doctor recommended that Micah be taken to a children’s hospital and his parents chose Children’s Hospital of Wisconsin in Milwaukee. After being admitted into the ER and over the course of 48 hours, Micah underwent a battery of examinations, scans, and blood draws. Several specialists saw him during this time and they narrowed down his possible disease to a viral infection, leukemia, or HLH. On August 26, 2011, Micah was diagnosed with Hemophagocytic Lymphohistiocytosis, HLH for short.
What is Hemophagocytic Lymphohistiocytosis?
Hemophagocytic Lymphohistiocytosis (HLH) is an autoimmune syndrome where certain white blood cells build up in the body’s organs causing fevers, inflammation and damage to the liver and spleen. When activated, specialized white blood cells called histiocytes attack other blood cells including red blood cells and platelets. The disease is pervasive and can also attack the central nervous system resulting in irritability and delayed motor development as well as seizures, vision problems and paralysis as it advances. When left untreated, HLH is fatal within approximately two months.
What causes HLH?
There are two forms of HLH, familial and acquired. Micah has the familial form. Certain diseases including infections, cancer, and HIV/AIDS cause the acquired type. The familial type is passed from two parents that are carriers of the recessive gene for HLH. Both types are extremely rare.
For more information go to the Histiocytosis Association: A Rare Community https://www.histio.org/page.aspx?pid=387
What is Micah’s treatment plan?
Even though HLH is not a cancer, the treatment calls for chemotherapy. Micah began chemotherapy a few days after being diagnosed. He also has to take steroids, anti-rejection agents, and antibiotics to control the immune response that is so deadly with HLH. Since Micah has the familial type, he has undergone a bone marrow transplant as of November 22nd, 2011. Micah's anonymous bone marrow donor was a perfect match (10 out of 10). The only knowledge about Micah's donor is that he is a male in his late twenties to early thirties and lives somewhere in the USA. Now that Micah has completed his bone marrow transplant his immune system will not be able to fight infection because his old immune system will have been eliminated and his new one will be just starting through a slow process called engraftment. During this period he is especially vulnerable to viral, bacterial, and fungal infections so extra precautions are taken to minimize his risk of getting sick. Also, it is likely that he will develop Graft Versus Host Disease (GVHD), the symptoms of which include anything as minor as a rash to as severe as organ damage. He also stands some chance of developing mucocitis or stomatitis which are sores in the mouth and digestive system caused by chemotherapy.
If all goes well, then he should be able to leave the hospital around 6 weeks post-transplant. His care will be switched to clinic visits several times a week then eventually go to once a week. His risk for infection will lessen, but will still be significant once he leaves the hospital. In preparation for Micah's safe return home Micah's family must take steps to sterilize their home to reduce potential contamination that could result in a severe illness for Micah due to his lessened immune state. Micah will also most
likely have reduced lung-functioning and sensitivity to air quality. So far Micah's family has been able to remove some of the sources of mold and dust present in their home by removing old carpeting and installing hypo-allergenic alternatives. While that is a step in the right direction there is still a lot to be done to ensure that Micah's home will be a safe environment for him when he is eventually discharged from the hospital and able to return to his home.
Micah will be followed in the transplant clinic for much, if not all of his life. He will have yearly clinic visits where he will have a full work-up including blood draws, scans and a thorough physical examination. It is not known at this point how long he will require medication but it is assumed to be for a long time following transplant.
What is Micah's family going through?
Since Micah was admitted on August 24th, he has lived at the hospital, along with his mother, Rebecca. Micah has not gone home in three months. When he first was
admitted, he was very weak from the disease. He also stopped walking or cruising, which he had just started to do before he got sick. It took him about three weeks before he stood up again and he still does not cruise or walk. He is just starting to crawl more.
Through all of this, Micah manages to giggle and laugh on his good days, play with his toys and has began babbling more and saying single words such as “Mom”, “Dada”, and “up.” His receptive language skills are also improving and he points to objects as you call them out. He is an extremely curious, gentle little boy who loves to examine and observe his surroundings. Since Micah was admitted into the hospital, Rebecca has been to their home once, aside from that one time visit home she has stayed close by Micah's side. Micah's dad, Jason, works in Rockford, Illinois which is 90 miles away from the hospital in Wisconsin where Micah stays. He spends a few nights a week at their house, then the rest of his time is spent at the hospital or at the Ronald McDonald house. It is difficult for Jason to leave his family and go to work. He tries to enjoy every minute he can with them and make the best of the given situation.