Packing extravaganza

Saturday, August 24, 2012

What do you pack when you are going to a place for 4 to 6 months and it is hot now and it will be bitter cold and snowy before you know it...and your kid is going to be bored and sick ?  This sort of thought has been intruding into my sleep at night.  The old brain just will not stop trying to plan and figure things out.

We leave in 2 days....well really 1-1/2 days...not that I am counting (yeah right)!

Sean, Dillon, Luca and I will drive up to Denver on Monday and check into our apartment in the early afternoon.  There is an apartment complex 3 block from the hospital that is for families who have children with cancer; some going through transplant, others going through initial treatment. Insurance helps to cover the cost of this.  It is called Brent's Place.  Check it out online at www.brentsplace.org.  You can read about it there.  Here is a picture of the building.



My parents will be driving up on Tuesday to join us.  They will stay at a nearby hotel.

Dillon's first set of appointments are on Wednesday from 9 a.m. to 3 p.m.  He gets multiple tests, labs, evaluations with the bulk being in cardiology that day, but a couple of others too I think.

Sean will fly home on Wednesday evening.

Thursday morning at 5:30 a.m. The Pickle is checking into the hospital for a little operation.....placement of another kind of port into his chest.  It is called a Broviac and you can see a picture of it here.....obviously D's will be minus the chest hair and the necklace...hehehehe...and it will be on the other side of his chest.
 

He will be recovered and out of there by early afternoon.

Friday there are a few more tests: neurology and ophthalmology; but only part of the day.

We are free for the entire long holiday weekend....Saturday, Sunday, and Monday.

Luca and my parents will hang out in Denver with Big D and I until Sunday. Sean needs to get back to Santa Fe to work.

School starts Tuesday for Luca.  He is going back to Waldorf and will be held with love and grace by the entire school community.  THANK YOU SANTA FE WALDORF!!!!!

That is a rough outline of the schedule for the first week.  We will be outpatient and enjoying lots of the free time in Denver with Sean, Luca, and my folks.

You read correctly at the beginning.....Dillon and I will be in Denver a minimum of 4 months and more likely 6 months.  The first 2 months are in the hospital for the transplant and initial recovery and then the last few we will be outpatient in the apartment with daily/weekly appointments at the hospital.  Usually there is an illness or two in there that lands the kid back in the hospital for a few days...especially since it will be cold and flu season.

Sean and Luca will drive or fly up every 2 or 3 weeks for a long weekend.  They will stay in the apartment.....even when D is in isolation there can be some contact with outside family.  

Radiation (which is all outpatient) will start the week of September 4.  He gets that for 2 weeks prior to going inpatient and will then begin the chemo that directly precedes the actual transplant.  As the schedule stands now....and of course it can and probably will change.....Dillon checks into the hospital for the long haul on September 21.  That is a full 3 weeks of outpatient testing and treatments before we enter the hospital for the transplant.  Hopefully, he will feel pretty well during that entire time and we can do some fun stuff and also get started on some school work.

I will keep you as updated as I can.  My brain is on OVERLOAD right now with the preparations of packing and just mentally and emotionally preparing for this departure.

A huge thanks to ALL OF YOU as you have made the first leg of this journey more bearable than it would have been otherwise. I know your prayers and powerful energy and love and support will continue and see us through this next step.

MUCH LOVE FROM THE WHOLE BUCKLEY CLAN!!!!!