Not gonna jinx myself

We are supposed to leave in the morning.  One issue up in the air is his feeding tube.  He has thrown up 2 NJ tubes and 2 NG tubes since Thursday.  These are the tubes used for natural feeding going into his stomach through a tube down his nose.  He also gets intravenous feeds called TPN, he can get total nutrition through this method but the tubes are better because it keeps his gut working.  So, without the tube he will drink a bit and eat a bit, not enough to sustain him but enough, in my opinion, to keep his gut working.  The TPN can take care of the actual nutrition while we are at home.
Then there is the G tube, this is a tube that provides natural feeding but is placed through the stomach wall under anestetic.  It is about a 3 day inpatient procedure.  One of my issues last Saturday was that I wanted to get this scheduled so there would be no delay this week in getting it done.  Well, the doctor cancelled it for some reason. 
They had their chance, if they think they are going to get me and Jr here for 3-4 days during the 10 days before our next scheduled chemo, they are nuts. 
No tube, means a happy guy, he hated it the whole time he had and i say good riddance to it.

Guess What

So guess what, I was skipped on rounds this morning.  I sat in this room for 3 hours waiting for rounds to find out that rounds were done and I had been skipped, so ticked.  I've got things I need to know, there's the GJ tube that needs to be scheduled for next week, his counts are going up and I wanna get out of here.  I found out that there was some sort of situation that families could not be out in the hall for rounds, bull, no one could come and tell me?  RRRRRR!
So finally I talk to someone, tell them what I need, off they go, time for lunch.

In front of the elevators.
I see a mother our ward and she has everything packed up to go home. 
"How long do you get to go home for?", I say.
"Forever", she says.
"OMG, that's great, congratulations!"
"She died this morning"

Jesus Christ, like I don't even know where I am, her child died today, someone else's child could die tomorrow.  I am in a hospital that treats really, really sick kids.  My child is really, really sick.  Jesus Christ.

A pic

Just in case you haven't seen a picture of the most precious toddler on the planet in a while, if ever.  Here he is, minus the NJ tube which accidently got pulled out yesterday morning.

Waiting

OK, once again his counts are bottomed, for real this time, he feels good, I feel good.  Can we please go home now?

Pain

So Jr got some of his cells back, blessed by Pastor Sue here at the hospital.  She is my go to person when things are bad, when I am feeling depressed.  She is also our bubble connection.  Junior is usually happy to see her, first because he knows that she is not going to come and poke or prod, second, her unending supply of bubbles and the will to blow them until he is satisfied.  Bless you Pastor Sue!
The cells went in with no problem, very anti climatic since his counts still continued downward and we do not see any improvement from it.  Now his counts are bottomed, the first fever is here. 
Pain meds.  He is now receiving pain medication from the sores in his mouth and throat.  He feels terrible.  We started with morphine (scary for me) but have decided that it makes him nauseous.  He is now getting dilaudin, another opiate, seems to be working better. 
It was so nice outside today, this whole trip has not been so bad when the weather was wintry and cold, nice weather makes me want to get him outside.  Depressing.

There and Back Again

We are back at the hospital for the long haul.  3 courses of chemo with a stemcell transplant, 1 course/transplant every 28 days.  3 months in the hospital, egads.  We were home for almost 2 weeks and it was wonderful.  Sorry I didn't post but I decided to be greedy with my joy.  Amazing, I can behave anyway I like right now, because I have a child with cancer. 

So, Junior is walking pretty well again, he had such a good time at home.  I am remembering when this all started and we were in the ICU, still in shock, and Manfred and I told each other how grateful we would be when he was back to himself, being a little monster/destroyer.  Well, we had to remind ourselves of that vow this last week.

So now to the technical stuff, his chemo this time is carboplatin and thiotepa for 2 days, a day of rest and then the stemcell transplant.  The rest of the time in recovery, I am expecting more of the same only worse.  This chemo is much stronger than before and kills everything, so basically, without the stemcells, he is getting enough drugs to kill him once a month for 3 months, lovely. 

Oh sorry, how could I forget, the results of the MRI!  Well, it seems that we are doing well.  The last chemo not only stabilized the tumor but there was some reduction!  That was great news, a hope giver.  It is possible that after this course, it may be gone, but if not, we should be eligible for radiation therapy since he will be almost 3 years old.

Next post in a few days or so after the chemo.