Treatment Day

Treatment days are about consistency and routine. After a year of spinal taps you get used to a few things.   First, I almost always have a headache. (Today was no different).  Second, everyone is pissed.  No one can eat.  Sean can't because of anesthesia and I don't eat out of solidarity.  Third, our appointment time is about 11:00 usually but we never go at that time.  It is always later.  Hey that's a long time with no food for an adult, never mind the eight year old.  Finally, traffic is usually bad.  Today the bridge over the Croton Reservoir was out... this sucks.


Wednesday is spinal tap day. (We have jackets).  Once we are there, the routine is pretty simple.  We wait to be admitted, wait to be called, wait to be accessed, wait for doctor, wait for anesthesiologist, wait for room, wait for Sean to be done, wait for him to wake up,  wait for... (you see the pattern).  The same nurses check us in. The same nurses discharge us.  The same parents are there with the same kids- same same same.


Today, however there was a disturbance in the force.  Patient A (I'll call him) was having his port removed-  A very big deal.  For the non -Cancer parents,  A medical port was implanted in Sean's chest the day after he was diagnosed.  It is used to take blood and administer medication.  It is standard practice for any Cancer patient.  Well, these parents and a grandparent were there in the Amb. Surgery unit to have A's port removed.  It is a day of celebration.   That's it... the end.  HE is done with treatment. Cancer free thank goodness! The joy and relief this family felt was palpable but so was the despair felt by the rest of us.  I was so jealous.  A's family floated.  They really did!  They looked different.  They walked different.  They were done but we are not....

St. Baldrick's - After

So I survived....  Watched a lot of very brave people shave off all their hair for a great cause.  Participants included: my coach Jeremy, my nephew Brody and our Oncologist Dr. Sandival.  I couldn't believe it when Dr. S walked through the door.  I almost fell out of my chair and Sean laughed himself silly.  

Two Remarkable Things: 

     #1 The whole event was organized by a 17 year old kid.  The back story is "Justin" was twelve when his younger brother was diagnosed with Sarcoma.  Justin was devastated and wanted to do something to help this cause so he got involved with St. Baldrick's.  This is the third year in a row that Justin has organized this event.  Well Done!

     #2 I saw so many families there that I know.  Now don't misunderstand me, I have no idea what their names are but I know their faces.  I am assuming the familiarity comes through Maria Ferari, treatment, other fundraisers, CCF, Giant Kids etc.  The HV Cancer community is very small and very friendly.  A lot of smiles and hellos were sent our way.  Us Cancer Moms chatted up treatment, travel plans, school and St. Ginny.  (Eventually, I will devote a whole blog to Nurse Ginny.)

All in all a great time!!!! Pat is already talking about when he will shave his head.  Sean was a pseudo-celebrity and even got to kick off the event by saying  "Let's shave!!!". 

Thank you all who participated and who donated.

St. Baldricks- Cure Children's Cancer

I first heard of this organization through my husband.  Cop / Military culture is famous for events like this.  I have never actually been to one of these events.  They look like fun and the fact that people are willing to shave their heads just to help this cause is pretty amazing to me.  Locally, a St. Baldrick's celebration will be held at The Claddagh Bar in Mahopac this coming weekend.  I'll report back.


http://www.stbaldricks.org/

We take everything very seriously....

Hudson Valley Cancer Mom: Bald Barbie

Hudson Valley Cancer Mom: Bald Barbie: My first thoughts....Thank God I have a son.  That being said a bald Barbie for a little girl is something I fully support.   A child losing their hair is difficult.  I remember exactly when it happened.  It was Easter 2011.  In the beginning, I foolishly hoped that Sean's hair would never fall out.  I also thought that as soon as Sean started chemo treatment his hair would just immediately fall out. So when it did not, I thought we were safe.   BUT Sean's hair did fall out-  Boy did it fall out.  His pillow, my couches, the towels etc.  were filled with chopped up and mashed up remnants of Sean's "hair".  Truthfully, I was almost happy when it all fell out because what was there on Sean's head was soooo not his old hair. His "old" hair was that soft, fine, blond - hair that most 8 years old have.  Treatment made his NEW hair coarse and rough.
     When Sean lost his hair my husband lost what was left of his resolve that "we were handling it" and I just cried.  A bald 8 year old was the ultimate manifestation of Sean's disease.  We had a child with Cancer... a terrible and difficult thing.    I feel that Mattel is foolish for not considering a "Bald and Beautiful Barbie".  As a mom and a Cancer mom,  ALL little girls receiving treatment for Cancer  and other diseases deserve respect, dignity and recognition.  I say YES- Make one!

 PS-
There are other diseases, not just Cancer, that make hair fall out.

.http://todayhealth.today.msnbc.msn.com/_news/2012/01/11/10122324-bald-and-beautifulbarbie-mattel-responds-to-lobbying-campaign

Hudson Valley Cancer Mom: First Day- New Blog

Hudson Valley Cancer Mom: First Day- New Blog: Sooooooo after a full year of stalling, I finally did it.  Here I am.