I read this today: There are 200 species of aspergillus (fungus) and 16 can live inside humans. The toxicity of the fungus is determined by its food source.
My stomach is flipping. Gross!
Right now, most importantly, Nicholas needs his immune system to fight the fungus, and what other disgusting parasite thinks my kid’s body is on the menu.
Dr Derek told me he was in pathology and saw the fungal balls. From a scientific point of view he was excited. “The fungus is an awesome specimen and pathology is hoping to cultivate it for study. Once the fungus can be cultured, then it can be determined which strain of aspergillus was growing inside of Nicholas.”
There’s more crazy medical stuff I gotta wrap my head around. Nick is getting a drug (GCSF – granulocyte colony stimulating factor) that should force his bone marrow into birthing new cells. And his Dad and I are getting the same drug to super produce our white cells that we can give to Nick!
(A letter I wrote published in the Coffee Mate paper from home)
Nicholas has been receiving white blood cells (WBC) from his dad (FH) and me because of a fungus he became infected with. The doctors are 90% sure that the fungal balls removed May 18th (7pm to 2am surgery) from between Nick’s right lung and chest wall is called aspergillosis, a deadly fungus that kills 75% of those it infects.
For more than 70 days the infection has suppressed his bone marrow, caused raging fevers (+40C), diarrhea and vomiting. It was another miracle along this road that FH and I were Nick’s blood type and negative for CMV (cyto megalo virus). It is a virus that 70% of BC’s population carries. It bothers no one unless it is contracted by an immune suppressed person, then it becomes life threatening. If we were carriers Nick’s dad and I would not be able to donate our cells to Nick.
The WB cells are harvested at Vancouver General in the cell-separating unit. A large bore needle is inserted into each arm. Our blood is routed through a centrifuge, and our white cells are separated and collected.
“If your lips start to tingle, tell me.” The nurse says to me. “Sometimes calcium attaches to the white cells, and the tingling is due to the calcium leaving your body.”
I watch my blood travel to and from the big centrifuge parked next to me, its whirring noise fills the room. There are a few lounge type chairs like the one I recline on. I’m the only person with two needles. Regular blood donors with special blood types read books or rest with their eyes closed. Their blood drains into bags on rockers, gently mixing so clots don’t form. These people are used to giving away their blood.
“Nurse!” My lips begin tingling like mad. I can’t do a thing because my arms are kept straight with the needles inside them. The nurse pours Tums from a bottle onto my chest and then begins to feed them to me. “Tums are loaded with calcium,” she says. My lips stop tingling.
The idea behind donating our cells is that our WBCs, while alive in Nicholas’ body (they live only for 6 hours), will help our child battle any fungal spores that remain.
The practice of harvesting WBCs from donors and then infusing them into immune suppressed patients was discontinued in 1980 because data was inconclusive. It is due to another child that Nick’s doctors began this type of therapy in a timely fashion.
In January of this year Nicholas M. from White Rock became infected with fungus. The doctors were stumped until someone dug up the study about using donor white cells. The three year old with acute lymphocytic leukemia (ALL) began to receive WBCs from his parents. The therapy worked well for the infection but the little boy died on May 1st because he could not achieve a remission.
Our Nicholas has received WBCs from me four times and from his dad (FH) 5 times. We all are receiving a GCSF injection once a day to boost bone marrow production. FH is moving like he has arthritis. The booming activity inside his bones causes him pain.
We are seeing a white blood cell count! The transfused cells don’t live very long – six hours at the most – but blood tests twelve hours after transfusion are showing life so the docs are thinking that Nick may be starting to produce cells of his own.
Our white blood cells may be kick starting Nick’s bone marrow. I’m thinking about little Nicky M and his legacy to our Nick. Two little boys who never met and now one is an angel in Heaven and holding my Nick’s hand.
So many people from home have held our hands throughout the months since Nicholas got sick. Thank you for caring enough about our little boy to ease our hardship. Thank you to the young ladies who sold cookies and juice in Castlegar and Robson, your thoughtfulness was touching. Thank you to all individuals and businesses for your financial support. Thank you to friends and neighbors who care for our eldest son while he is left without Mom or Dad. Thank you for caring for our many animals and little farm. Thank you all, for the prayers, phone calls and visits, these are priceless.