Back in the Saddle....

Monday, July 9, 2012

A quick update this Monday midday.

Luca and I had a lovely weekend together.  Just life as usual really, nothing extraordinary or spectacular, but ohhhh so healthy and refreshing and wonderful.  The snuggling was my favorite part.....we will have to ask Luca what his favorite part was.  Luca misses Dillon terribly.  Every morning his first question is...."Can I see Dillon today?"  

I got back yesterday afternoon to a chipper Mr. Pickle.  He was all frisky and we had some good laughs reading a new book we got......THE FART BOOK....(Thank you Cynthia, Abbey, and Alyeska!!)  I have not heard that deep, hearty laugh in quite some time, so that was a true gift for me!!!

Sean and Big D had a fantastic weekend.  They did all sorts of things (went outside to smell the rain, attended a little workshop and lesson on harmonicas, went down to eat at the public space and the cafeteria, had a couple of visitors which included music and food (Thank you Mark and Tom!!!))

So I am back.

Uneventful evening and night medically speaking.  Up many times to pee, as they are pumping D full of saline to help flush out the toxins from chemo and keep his kidneys healthy.

Dillon is on day 4 of a 10 day resting period.  No chemo and no steroids.  It is lovely.  I asked the doctor today specifically...are we gonna be here through this entire rest period and then through the next chemo cycle.....YES, absolutely, no question about it.  OKAY....it is fine....we are comfortable and time actually passes quickly, I just wanted to be clear. The reason we have to stay and so many other kids go home during this part of the process, is because of the location of Dillon's mass.  It is pressing on his trachea and esophagus and can compress his airway. They want him in the hospital the entire time for safety reasons. They don't want him to be at home and start having trouble breathing....because by the time we could get him to a hospital he could be dead.....so here we stay, safe and sound.

Hey everyone...this is a good time to visit!!!! While he is not on treatment, not as completely wiped out, not hooked up to every machine in the room....so please email and/or call me to set up 'appointments' for visiting.

WHAT NOW??? A common question lately....so here is my understanding of the next steps....
After the 10 day resting period he will get another bone marrow aspirate to check the level of cancer in the bone marrow and he will get a CT scan to check the size of the tumor.  The results of that will determine the next step.  Lots of unknowns and lots of waiting....which D and Sean and Luca and I and the rest of the support team are getting better at...sighhhh.  Do we like the unknown and the waiting....HECK NO....do we grasp fully that it is just another part of the process and that the doctors don't know everything and that some things are just a wait and see...yes...but it is tedious and scary at times.  The big question in everyone's mind....IS IT WORKING???  There is no way to know really until the scans and bone marrow are check...so here we hang, relaxing, playing, laughing, praying, getting acupuncture, eating, reading, watching, visualizing, growing, and waiting.

Tomorrow is a routine lumbar puncture/spinal tap.  They check his spinal fluid to make sure the cancer has not spread to his nervous system and they inject a small dose of chemo into that fluid to make sure that if there is even 1 cell hiding out in there somewhere, it gets obliterated!!!

Another one of our angels came up from Santa Fe and gave Dillon and I acupuncture this morning.  We are both feeling quite relaxed and peaceful this afternoon.  Dillon was looking forward to the visit and was very zen through the whole thing.  What an open, wise soul this child is.  I think he is intuitively learning what is going to benefit him....and he acknowledged that the acupuncture was definitely a positive step for him.  THANK YOU MELISSA!!!!