October 2016 infection after infection

I apologize for not updating my blog for sometime now.  It is now the month of October and so much has happened. 

Healthwise, Ella has been getting numerous bladder infections.  Since the last post in February, she had an infection in March, April, May, June, and August.  We started her back on prophalactic anitibiotics at the end of June so she has had one infection since then.  Unfortunately, her summer was filled with bladder infections.  But she also did a lot of fun things before starting Kindergarten. 

She went camping at Ft wilderness at Disney and Melbourne beach, trips to sea world, lots of sleepovers and playdates, swimming, Crayola Experience, bowling, beach trips….she was very very busy! 

In July 2016, she started experiencing symptoms of anxiety – rapid heart rate, shortness of breath, nausea, trembling, etc.  After ruling out anything medically wrong, the conclusion was the Ella was experiencing anxiety attacks.  It doesn’t surprise me after all she has been through…but really, a 5 year old should not have anxiety attacks.  Things have started to subside recently after some cognitive therapy and relaxation techniques and things seem to be back on track.

She had her MRI in August 2016 which came back “stable”.  The tumor still exists in her spinal canal, but there has been no growth, nor shrinkage, so the results are stable.  As of now, it is not impinging on her canal nor is it pushing on any other organs.  She has not had any complaints of neuropathy in her right foot now since January 2016. 

Ella started Kindergarten this year and is doing fantastic.  She got student of the month the first month of school!  She has made many new friends and seems to be really thriving.  She is learning so much and has now started reading.  She loves her teachers and comes home every day excited to tell me what she did at school. 

She turned 6 this past weekend and had a great bday “cat” party with family and friends.  Every year I feel is another year away from cancer.  Another year to celebrate a cancer free life.  But just because that cancer is gone does not mean that we are feeling secure with Ella’s health and future.  Every time that she has a complaint I fear that cancer.  Every time she says her belly hurts, I fear cancer.  Every time she says her legs hurt, or her arms hurt or she’s tired, or she has a headache, or she’s out of breath, or she’s doesn’t feel good I FEAR CANCER.  And on a typical day, she will complain about something and I FEAR CANCER. 

So, just because her cancer is gone does not mean we are in the clear.  Yes, she is 5 years out now….this is really good and odds are that neuroblastoma will not come back.  At least not in the same spot.  Her chances now of getting neuroblastoma again are just about as good as any other kid.  But tell that to a parent with a kid that had cancer already.  ODDS MEAN NOTHING ANYMORE.   What we look for now with Ella is what is called secondary cancers.  These are cancers that are caused by the treatments of her neuroblastoma.  Yes, the treatments itself, can cause other cancers.  And of course we have to keep an eye on her existing tumor in her spine.  This tumor may not have active cancer cells, but it can certainly start to grow and metastasize in body affecting her organs and spine. 

So, let me tell you….the fight is not over.  The fight will never be over.  The fear will never go away. 

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