Wednesday, June 16, 2010

Prayers For Michaela -
The Road Home

Leetsdale, PA - As many of you know from either conversations with me or through several posts here, my fiancee Leslie has two daughters. The youngest, Michaela, has been fighting neuroblastoma, an aggressive cancer involving nerve cells, since December of 2005. Michaela has endured two major operations, stem cell and bone marrow transplants, extensive radiation and chemotherapy, and most recently some specialized radiation treatments in an attempt to arrest this disease.

When I left Pittsburgh around a month ago, Michaela was in the same general condition as when I had seen her in late March.
She was still struggling with nausea and vomiting, resulting in a considerable loss of weight. At the same time she would also have good days, wanting to be more active, willing and able to hold down some of her favorite foods.

The big difference in Michaela's disposition was that she felt too weak to walk long distances. Leslie got her a portable wheelchair, which helped a great deal. In this photo Michaela is looking at a statue of a Triceratops covered with small toys, many of them dating from my childhood. I saw lots of green plastic army men in there..

Recent GI studies to attempt to ascertain the cause of Michaela's vomiting located a narrowing of one of the loops of her small intestine. Michaela's surgeon was hesitant to proceed without some additional nutritional support. With that plan in mind, Michaela checked into Children's Hospital in Pittsburgh in mid-May to begin Total Parenteral Nutrition (TPN), in hopes of building her up to a point where she could safely endure an exploratory procedure.
After admission, a CT Scan of Michaela's abdomen revealed extensive new tumor growth throughout.

After the scan, Michaela started having more difficulty with pain. Leslie and Michaela elected to go home with the TPN, pain meds, and hospice care. She has lost more weight in the past month.

Getting Michaela to and from Children's almost every day has been a difficult task for Leslie. Michaela has two portable IV pumps, and needs the wheelchair as well. Like any sick child, her patience is limited, and those around her can be subjected to the effects. Leslie is excelling in her role as a full-time caregiver, but is plainly exhausted by the end of the day.

On top of these harsh realities comes the stark realization that Michaela could soon lose her battle, and be called home.

Since I got back here last week, I've been helping with general household duties and assisting Leslie with the almost daily trips to Children's for radiation treatments, as well as occasional transfusions of blood or platelets. Michaela's body may be weakening, but her spirit and belief in God do not appear to have been shaken by her experiences in fighting cancer, and tolerating the treatment regimen that may be arguably as taxing on the body and spirit as the cancer itself.

I initially thought that being in Leslie's position in terms of having lost a loved one to cancer would help me understand things better, especially since both of us have teenagers that have also been affected by this illness. I find myself feeling at times inadequate to the task, primarily because I'm not here as much as I should be, but also because it's a child that is suffering.

This inadequacy may also be an extension of feelings that have affected my relationship with Leslie, related to distance, logistics, and bringing two families together through hardships past and present.

So I'm here to help, learn, adapt, and most importantly, love. As Michaela's struggle continues, so does the need to deal with medical and other expenses that have been steadily building up over the course of her illness and treatment. Those of you with the resources to assist in this area can send your donations to:

Michaela Russo Care Fund Trust

c/o Dollar Bank

P.O. Box 765

Pittsburgh, PA 15230-0765

Thanks very much, and have a good week ahead.

1 comment:

Tedi said...

Thoughts and prayers are with you, Leslie and especially Michaela from all us at KAFM. Michaela's strength and spirit is an inspiration to us all.