Note:  I started writing this post in 2018.  With the care my boy needed, I was unable to finish it so I did today.

 

Some days are better than others.  I am a Grandmother, a Mom, a nurse, a comforter, an advocate and somewhere in all that I still have to be an individual.  Pffft.  There isn't any time for me. Hasn't been for a while.

In August of 2017, my 8 year old was diagnosed with AML:  Acute Myeloid Leukemia which is extremely aggressive and rare in children.  There aren't a lot of treatment options on a pediatric level because this normally occurs in adults.  Go figure.  My kid has to get the hard one to treat.  When he was diagnosed we almost lost him - he got septic and ended up in the PICU.  I'm not going to go into detail because I have another series of posts entitled AML: Living with Leukemia.  I don't have a lot of time on my hands but I post to that segment of my blog whenever  I have the chance.  It's our story and our journey.

The first year was the standard treatment, four rounds of chemo consisting of one month in the hospital for each round of treatment.  In December he was considered in remission so I was hopeful we had really taken care of it.  Nope.  In April of 18 his leukemia came back with a vengeance. It wasn't responding to chemo, our treatment options were dwindling and we needed to get him to Boston for a bone marrow transplant.  In order to do that the disease had to be less than 2%.  We never got to that point, but his Oncologist pleaded his case and Boston accepted him with 5% disease.   Transplant was a success even though the transplant doctor told us that he would probably die there.  The new cells grafted in about 10 days and within a month we were home.  Unfortunately, again, he relapsed and this time it was the last.

Everyone knows that each time cancer relapses its harder  to get into remission.  Try as we might it didn't happen.  While he was a fighter against the cancer, his immunodeficiency made it impossible for him to fight the fungal pneumonia he got.   5 months after his cancer relapsed again, he gained his angel wings. He was unable to fight the pneumonia and it encompassed the entirety of his lungs.  He took his last breath in my arms on September 15, 2019.

Being a cancer mom is the most God awful thing in the world. Especially when the disease claims the life of a 10 year old little boy.  A little boy so full of life, so full of spit and vinegar, so full of fight, only to be taken down by pneumonia that his body couldn't fight because his immune system was compromised from all the chemo.  I wouldn't wish this on any parent. Ever.

Now, I find myself having more bad days than good.  I find my days full of heartache, tears and emptiness.  My child was my purpose, my best friend and now he is gone.  Will I ever find a new purpose?  I really don't know.  All I know right now is that the direction of my life will be uncertain for a very, very long time.