Tuesday, May 20, 2014

NF Awareness

Bracelets Parker helped make in NF awareness colors
Last week was an "off" week for chemo but we remained very busy. This month, being NF awareness month, my mother-in-law (Momsie - as the boys know her) wanted to do a special event at her work to raise awareness for Neurofibromatosis as well as raise funds for the Children's Tumor Foundation, an organization which is "dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis".  Visit their website to www.ctf.org for more information.
Meeting the Mayor

Momsie works for the Township of wonderful Toms River, NJ. Friday we set out to visit many of the township departments to collect donations and share a bit of Logan's story.  The boys had a great time handing out stickers and lollipops and meeting so many wonderful and generous people.

While we were there, despite his busy schedule (which included dealing with an overnight fire across the street from town hall) Mayor Thomas F. Kelaher took time to meet with us and hear a bit about what Logan has been going through.  The boys even managed to persuade him to to give them some trinkets off his desk.  Leave it for Logan to "steal" from the mayor.  We appreciate Mayor Kelaher taking time to visit with us and hear a little about NF.

Our collection tour also included a stop at the local police department.  Not only did they contribute to the cause, they gave the boys a private tour of the facility.  Highlights of the tour for the boys included banging the gavel on the judge's stand, visiting the jail cells and sitting in and turning on the siren of a police car.

Locked up

Order in the court!
Logan's best "I just got arrested" face

 All in all it was a great day to share information about NF and raise money to help support research and resources for families effected by NF.  I want to thank everyone that we met and contributed so generously to our cause.  A special Thank You to Mayor Kelaher, the Toms River Police department and Momsie. 

Friday, May 9, 2014


Working in schools, I've heard a lot this week about "Teacher Appreciation".  After all, being "appreciated" one week a year totally makes up for all the hours, effort and dedication teachers put into their work, right? While I value and appreciate all the teachers I work with, as well as my children's teachers everyday, this week is also earmarked as a week to appreciate another very important and hard working group of people: Nurses.

When we started this medical journey with Logan, one thing became very clear. The nurses make all the difference. Sure, the doctors are the ones diagnosing, treating, monitoring, and basically calling all the shots. Don't get me wrong, we love our doctors. They are caring, responsive, entertaining and their job is clearly vital. But it's the nurses that are on the front lines.

iPad time in the art room
They are the ones carrying out the orders. They are the ones who stick these kids with needles. They are the ones giving them their meds. They are the ones caring for them as they get sick. These, among so many other things, are the duties of a good nurse. 

We are blessed to have not only good nurses, but great ones. Great nurses tell you, every time they see you, how much they love your cool Spider-Man shoes. They let you help and be a part of your medical treatment. They let you make decisions that are just as important as the doctor's, like if you want a spongebob sticker or a Spider-Man one (even though they know it's Spider-Man you are after).  They bring extra stickers because they know you're going to want one for your brother. They ask you questions about your brother, your cat, your school, because to them you are more than a patient. They ease your fears and make you feel strong. They reassure you that you are doing a great job. 

These are great nurses. These are the people that I am thankful for, not only this week, but every time we set foot in the clinic. These are the people that make this experience just a little less scary and a little but more like home. 

This weeks visit was a solo trip for me. Ryan wasn't feeling well and taking germs to an oncology clinic is just plain wrong. Even though Logan had his medicine in the morning, he was definitely more active than usual. Enough so that the doctors noted it and asked if the Ritalin was working. There was a good amount of screaming and yelling and crying and it had nothing to do with the needles or medicine. 

Going for a walk
We also discussed a mild concern of mine for Logan's occasional racing heart and deep breathing. Normally it wouldn't bother me, but given a family history (including my own) of heart issues, I thought it was worth mentioning. They sent us for an EKG. It was a great way to kill time while we waited for the pharmacy. The EKG looked fine. This will be something that we will keep our eyes on. 

The pharmacy was a record slow today. About a 2.5 hour wait for his medicine today. Thank God for the art room and very hard working art therapists!!

Pretty normal infusion today, with the one very exciting change that LOGAN DIDN'T THROWUP!!! A little extra pre dose halfway through his infusion seemed to do the trick. This is the first time in over 2 months that Logan has gotten through his infusion without getting sick. Hopefully this plan continues to work and  this will help Logan's recently decreasing outlook on his doctor visits.