Our new Abode

Wednesday, August 29, 2012

Time again flies right by.

So, the trip up here was uneventful...which is good when you are driving on a highway at high speeds for hours on end.  We arrived Monday at about 4 p.m. and by 6 p.m. we were unloaded, rested, and ready for the community dinner downstairs.  A group of volunteers makes dinner every Monday and families are welcome to go down and eat with the group or have a plate delivered up to the apartment for each family member.....ahhhhh a hot meal that I did not have to plan, prepare, pay for, or clean up after....perfect at the end of a long day.  They served tacos and beans.  Every Wednesday and Thursday there are chefs that come in and meals are again delivered to the apartment.  You don't have to be here...the staff lets them in and they leave the food in the fridge.  NICE!!!  There are movie nights, game nights, craft nights, etc.  Lots of fun for the kids, things to keep us distracted as time passes by.

I know everyone is wondering about the details of the apartment...so I am going to put a bunch of pictures with captions...a virtual tour of sorts (hahahaha).  Darn it, these pictures won't upload in the order I want.  I was trying to take you from the front door, through the apartment, and then to the balcony but I cannot figure it out.  You will see that the only thing missing is the bathroom....really I didn't think you needed to see our throne....hehehe.  Also, you can't see this, but there is TONS of storage in this place, more than we have at home...there is a linen closet, a coat closet, and lots of cabinets and such.  We are on the top floor (it is a 4 story building with 16 apartments) and we have great views of the mountains.

The boys' room with bedding from home...feels like home instead of a hotel

The door of the apartment greeted us as we walked up.

Cute metal work on the balcony railing

Harry Potter themed door decorations

front door looking from the inside

Big old kitchen....lots of cabinets, more than my whole house in Santa Fe

Dining table and TV with stand under for books, games, etc.

Faux leather couch and chair

living room view from the kitchen

master bedroom...my quilt from home

little sitting area outside our door in the hallway

Ignore the apartments and look at the mountains in the distance

Have we shared with you the cleaning standards at the apartment.  It is called the "safe and clean" guidelines.   It is specifically for cancer patients who have a compromised immune system.  We have a many-paged document outlining our duties each day.  They say once we get used to it, it should take about 1-1/2 to 2 hours each day....WOW!!!!!  Let me tell you right now (and my parents will vouch for me on this)...I am NOT the cleanest or neatest person you ever met, so this is a challenge for me.

Dusting, sweeping, mopping, scrubbing toilet and sinks daily.  Washing all bedding including mattress pads and all towels 3 times a week.  Cleaning windows, under fridge, under couch, under stove, dusting lamp shades, dusting window blinds once a week.  That is a sample....it is a massive job.  The boys have been a big help but Dillon and I dread when it is just the two of us....and then I realize it will really just be me because when Dillon's system is down he cannot be cleaning, stirring up dust, wiping up germs.  They give you a pass for when your child is inpatient...so, NO, I do not have to leave the hospital and come clean the apartment during the inpatient phase of the transplant....unless I come to eat, shower, exercise, etc...then I should clean as I can they say.  This is all in the name of lowering risk of infectious illness for the kiddos here.  Is it easy...NO.  Is it fun....NO.  It is completely necessary....YES.  And they encourage us to take these practices home and use them for the first year after transplant....HOLY SMOKES...now that sounds like a full-time job to me. :))  Nothing, of course, in comparison to what our courageous Big D is going to go through...so we grin and bear it, right??  Oh yeah...they do surprise visits to inspect every week to be sure that each family is keeping up with the needed cleaning.  If a family refuses to comply they are asked to leave because it puts everyone else at risk.

One more topic....today was Dillon's first day of appointments.  He got a TON of labs done, which was just a draw from his port (no big deal)...but it was about 20 vials of blood.  We did a TON of paperwork with signing consents for treatment, statements about understanding of risks, optional agreements to allow Dillon's case to be studied for research. On and on and on for almost 2 hours (the boys were about to go nuts sitting through that....thank goodness for the ipad).  The afternoon was spent in cardiology getting all kinds of fancy pants tests  (HI APRIL...I borrowed your line) including a good run on a treadmill.  It was not as long and tedious as we all expected.  There was lots of messing around and playfulness as all 4 of us stayed together through the day.  The promise of Dillon's very last swim was fulfilled and we all swam at my parents' hotel pool for 2 hours before Sean's departure back to Santa Fe (Luca is staying a few extra days and heading back on Sunday with Nana and Grampy).  Tomorrow Dillon gets a new port ( a minor surgery that we have to arrive for at 5:30 a.m tomorrow....you read right...5:30) which will not allow him to be submerged in water for the next many months...so today was a last hurray and he sure enjoyed it.  The good part of the early surgery is that he gets done early and can eat because before surgery you cannot eat or drink anything for many hours beforehand.  He needs this new port placed because it has thicker tubing, which is needed for the bone marrow transplant, and also because it has 2 tubes so he can get more medications simultaneously.  Also, this one is a tube that actually comes out of his body so no more port accessing (that is the needle part that gave Dillon such anxiety in the beginning of this whole ordeal). 

There is so much to tell..I could go on and on....but I am off to bed as we have that crazy early appointment tomorrow.  We will let you know how it goes and maybe even post a picture.