April 29, 2014

Off again

We made it four months without any hospital admissions.  That's a new record.  Getting used to a whole new hospital is difficult.  It takes awhile to know where everything is, to get the routines down, get to know the nurses and doctors on the floor.  Madeleine and I have been inpatient in Jacksonville since yesterday and I find myself missing the hospital in Albuquerque.  That's crazy, I know, but there is comfort in familiarity.  Trying to find a cup of coffee, or a straw, or a quiet place is difficult when you don't know where anything is.  If I was to build the ideal hospital (based only on my standards - who cares about all that other stuff!) I would take the food from UC San Francisco (you could call and order just about anything you wanted at anytime and it was GOOD), the playroom, child life specialists, and Cancer Fund from Albuquerque (Madeleine keeps saying she wants to send the Jacksonville team to Albuquerque so that they can see what a real playroom looks like), and the efficiency of care from Jacksonville, and voila, perfect hospital. 

Madeleine's chemo stopped working.  In fact all the gains that were made with the first couple rounds of chemo have been reversed.  She has pain in her leg again and is back on strong pain meds.  Her CT revealed that the pleural effusion that we were watching was markedly worse, and the pseudo-cyst in her abdomen has also increased.  We were admitted so that the lungs could be drained, and that was done in the OR today.  Even though she didn't have any symptoms related to the fluid in her lungs (cough, low O2 sats, etc), she seems to be feeling a lot better overall since the fluid was drained.  Even the pain in her leg seems better.  They will do another chest X-ray tomorrow to see if the fluid is accumulating again.  Tomorrow she has another scan, and on Thursday the GI doctor will drain the cyst in her abdomen.  We are hoping to go home on Thursday.

On Monday we have a consultation in Atlanta with the neuroblastoma specialist there to find out what her next treatment will be.  At this point it is about giving her quality of life for as long as we can.  There are no cures for this disease. 

9 comments:

Bree said...

Sending peace and love. Xo

Danelle said...

Sending you all hugs and positive thoughts!!!

Anonymous said...

Missing you guys right now. I wish we could be there.

Kyle and Karen

JT said...

Hoping for you, the ability to BE in the moment, courage and grace. Love the designs for healing spaces! Share those ideas with your current team----they are huge! Love and hugs to all of you

Sara said...

Thinking of you.

Kimberly said...

When I see your pictures, I see a happy little girl who is enjoying life to the fullest that her body will allow. I see the way she smiles at you holding the camera and I can tell that you are holding every precious moment with tender love. May you continue to find peace and joy in this time you have with Madeleine. And may this time be filled with many more remissions like the last 4 months.

Unknown said...

Thinking of you and sending love.

Unknown said...

Let us know if there is anything we could send that Madeleine would enjoy.

Becky said...

You are in my heart, always, and always hoping for more moments and time for you all. Hoping for many good days, small and large miracles and many, many more smiles and hugs