Tattoos

This is going to be a vent post, as well as in informational recording of his appointment yesterday.  It did not go at all how I thought it would go.  I realize now that we have been very sheltered and pampered at Seattle Children's.

We arrived at our appointment on time, scheduled to watch an informational video about what to expect.  Caden didn't much care to watch the video, but I soaked it all in.  I was fascinated to see how they have a special person that works with the oncologist to set up the exact direction/angle to shoot the lasers.  The software that they use is pretty amazing and wildly interesting.  I have seen my share of Caden's CT scans, so it was cool to see how they use those scans to administer the radiation to the exact spots.  Truly, I watched that movie thoroughly.  The only thing that stuck out to me was that they take scans every five treatments.  Other than that, I felt like it was pretty straight forward.

They took us back to their "mapping" room.  She showed us the CT machine, which looked identical to the ones at Seattle Children's, minus the Buzz Lightyear stickers all over the front.  She showed us the mat that Caden would lay on, that would eventually become a mold for his body.  They would get him into the position they needed him in, have him relax as much as possible, suck the air from the mat, which pulled the fabric tight around the foam, making a mold of Caden's body.  He will be placed on this mold each and every time, making the process a little faster and more accurate.  They will still double check everything each day.

She then started talking about what she was going to do that day to map everything out, mentioning the word "tattoo" many times.  Here's where we have been sheltered at SCH: Caden has always been marked for surgery.  Every.Single.Time they have used a purple marker on him, similar to the ones they use when they pierce ears.  If anything needed to stay for a few days, they used a Sharpie marker and then just colored over it each day.  That was what we thought she meant by "tattoo."  She told us he'd be about 30 minutes, and then showed us to our waiting room.  As we were sitting on the chairs that looked stylish but felt dang hard, we talked about her multiple use of the word "tattoo," and if that meant what it usually means.  I asked Randy if he thought she was serious, to which he replied that he thought it would be more than just the marker, but not a real tattoo.  25 minutes later, we were brought into a room to wait for him, as well as talk with support nurses that are there to answer our questions.  We had barely sat down when Caden was escorted into the room.  I immediately noticed his face-- I knew something was wrong. 

I rushed the "meeting," wanting to whisk him from the room.  Showing just how naive we were, Randy asked how long the "tattoos" would last, to which she looked incredulous at him, "Forever."  Caden did not know.  His face fell ever so slightly, and he began to stare at the table.  My rage ignited--  HOW DARE THEY MAKE ME LEAVE THE ROOM AS THEY DO THAT TO MY CHILD!

Caden begins radiation on Thursday.  That ink, placed just below the surface of the skin, will light up with their equipment, making it easier for them to get the positioning right.  I would have allowed it, absolutely, but it would have been nice to know that that was what they were going to do.  We didn't have any clue that that was what they meant.  This is our first time with both Radiation and a facility other than a children's hospital-- we didn't know we needed to ask more in-depth questions!!!!!  I have never been asked to leave the room, unless a doctor was checking Caden below the belt- or surgery, of course- so I never thought that they would do anything like that with me not right there to support MY CHILD!!!!!  Caden may not ask to hold my hand every single time he is poked any more, but he has always wanted me in the room.  I know I wouldn't have been able to take the pain away as they shoved that thick needle into his stomach FIVE times, but I would have been there to support him.  Instead, they asked his parents to leave.  Policies need to be put into place EVERYWHERE when it is a child.  I understand that most patients they see don't need "support," but this is not just anyone, this is MY son.  He may not have wanted/needed me there, but he should have been given the option.  He should have been told that he was going to be given permanent tattoos, that it may hurt, and whether he wanted one or both of us to stay.  Not once did they ask whether he understood what it meant, or what he wanted at all.  "Do you have any questions" is too broad.  Sometimes you don't even realize that there are questions that should be asked, because you don't comprehend the situation for what it really is.  It feels like we have been through a lot, yet not enough to fully understand. 

I asked him if it hurt terribly.  "Yes.  Especially the one on the left.  That one was bleeding."

I kid you not, it felt, at that moment, like I had gotten that tattoo.  And it fueled my rage even more.  HOW DARE THEY MAKE ME LEAVE THE ROOM AS THEY DO THAT TO MY CHILD!

(One on each side, with three down the center front.)

They are only just dark spots that look like freckles, not the entire circled star of the Sharpie (which is what I thought it was going to be, Sharpie!).  And, honestly, they are not going to be the most noticeable thing on his stomach.  But, it's the principle of it all.

You better believe I will be using a few choice words when they have me fill out the "What could we have done differently to make your experience better?" portion of their survey.  I just don't understand how they couldn't have been more sensitive.  I mean, the kids is dying of cancer, getting freaking radiation during the first few weeks of his Summer vacation!  The least you could have done was let us sit in the room with him!