Thursday, January 2, 2014

Goodbye 2013, don't let the door hit you in the tukus on the way out

It's been a while but life got in the way.  I guess the best way to review the end of our year is in bullet form chronologically....

- F's eye was adjusted by the ocularist.  He had to add quite a bit to the edges and we were left with the temp eye for a week while he took care of it at the home clinic.  We have not had problems with rotation since then.  However, F has taken to taking his eye out and holding it in his hand.  I sometimes find him wandering around the house, holding his eye.  It has happened a few times in the car, which makes me nervous as he is still rear facing.  I have only found it in his mouth once.  The worst time was when he did it in Walmart.  He was facing away from me in the front seat of the tandem stroller.  I was in the card department and walked in front of the stroller and found that his eye wasn't in.  He wasn't holding it either.  I panicked and thought 'I have to go to the customer service desk to help them find my son's eye.' I found it in the hood of his jacket.

- My husband participated in the Dempsey Challenge.  He pledged to bike 100 miles to raise money for the Dempsey Center.  F and I walked the survivor walk.  It was a lot harder than I thought it would be.  People gave the "oh so sad" look when they saw that F was the survivor, not me.  B ran in the kids fun run, which was a superhero theme.  My mother made him a great cape and he loved it.  My husband raised over $500 for the center, which provides support and care to cancer patients.  I also got within ten feet of McDreamy.  He's a lot shorter than I thought he would be.

- F's IEP team convened and wrote a new plan with consultation from his Early Childhood Educator and Teacher of the Visually Impaired.  They also recommended an Orientation and Mobility assessment, which is still in the works several months later.

- We attended the Camp Sunshine Pumpkin Festival in Freeport for the third time. The boys enjoyed looking at all the pumpkins and showing off their costumes.

- We attended Camp Sunshine for the second time for Trick or Treat weekend.  The boys had an amazing time.  This was a long weekend for general oncology, so kids with a variety of diagnoses were in attendance. There was a retinoblastoma family we had met previous and another RB family that hadn't made it in the summer.  A few days is not enough to cram everything we wanted in, but we all enjoyed it.  The boys got more time to wear their costumes, which delighted B particularly.  He performed "What Does the Fox Say" in the talent show, which he signed up for without me knowing.

- We survived Thanksgiving and Christmas.  All three boys were into Christmas this year, particularly B.  His letters to Santa from him and his brothers (as dictated by B) were published in the Parents section of the Huffington Post.  No one was afraid of Santa, but the twins were not big fans.

- F had another clean MRI.  One more and we will be able to space them out to four months, instead of three.  However, our doctors are not sure what the future holds.  They are fairly certain that he has a good prognosis, but have no other studies to look at.  We have registered him in the childhood cancer database and have offered to paricipate in any research we can.  We have connected with another person who had an intraocular medulloepithelioma as an adult who lives in New England. It is hard to feel so connected in the retinoblastoma community, but so isolated because of the IM.

2013 was not a good year.  I am glad to see it go.

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