Induction Day 1 (almost)

We kind of sort of almost started the Induction phase today.  After a hard night with Nathan, the day started off early but according to plan, we got the Cancer clinic at 7:45 and had blood drawn for testing.  We then went off to RUH for an echo cardiogram with Bob.  Nathan was full of spirit today but it was a good spirit.  He was testing limits but in a smiling way and was making up stories all morning.  After the echo we headed back to the clinic to await his intrathecal procedure.  We had time to set up the Operation game we bought for the clinic and have a couple of games, played a game of UNO and just started playing Wii when the green men (anaesthesiologists) came.  Then our day went sideways.

I mentioned to Dr Ali that Nathan was having trouble with one of his testicles.  It felt a little larger than the other and was sore.  After Dr Ali finished giving Nathan the three drugs intrathecally (methotrexate, cytarabine, and hydrocortisone) he checked Nathan out.  He too thought one was a little larger and immediately wanted a biopsy.  One of the issues with Leukemia is that the leukemic cells like to hide in both the central nervous system and testes as the drugs don't really get to those areas.  So having any issue there is a cause for concern.  Dr Ali phoned up to a specialist, Dr Miller, to arrange the biopsy.  We were hurried up to the Pediatric ward, I rushed to get Nathan admitted, so that we were ready as there was an opening in the O.R..  We were to have the biopsy and then head back to the clinic to finish up Nathan's chemotherapy.  However, there was a little miscommunication there about that opening and there actually wasn't one.  We ended up in our room, 3013, and were told that we likely wouldn't have the biopsy until 4:30pm.  This might not seem like a big inconvenience, however Nathan hadn't eaten anything since 8pm the night before and wouldn't be allowed to eat anything until after his procedure.  First we told him he could eat after his LP, and then we said he had to quickly get something else done and he could eat at about noon, and now we were saying that he couldn't eat until 6pm.  He wasn't happy about that.  And then we had to go back and figure out with the Dr Ali when the rest of the chemotherapy would take place.  After consulting with the doctors in Calgary it was decided that we would do the rest tomorrow, essentially start the Induction phase on Tuesday while waiting on this biopsy.

On the ward, the residents came through to talk to us, get the history, the usual stuff, and mentioned that Nathan's procedure would now be this evening.  Not good.  But then, not even two minutes later, the nurse came in and said "I heard a rumour that he's going now".   Being confused I asked, who's going where?  And she replied that Nathan was going for his biopsy... it was 2pm.  Off we went a couple minutes later.

We get down to the pre-op room, hung out for a bit, and they came and asked the same questions again, and then indicated that the procedure will take about 20 minutes.  Off I go to the waiting room.  Almost an hour later, and getting anxious, Dr Miller comes to talk to us.  What he found was a torsion of the appendix epididymis.  He still took the biopsy but believes the swelling and pain came from this torsion (twisting) of a small appendix (sunflower seed sized piece) off the epididymis which is just above the testes - who knew?!  I think this is good news as it looks like nothing is in the testes but the biopsy results will tell us in a few days for sure.  One other thing on this... Dr Miller said that this is usually quite painful, and was surprised that Nathan was not complaining more than he was.  He said that Nathan must be one tough kid - that is for sure.

We got back up to the ward about 5:30, just in time for supper.  Nathan was so hungry we actually ate some of the hospital food!  We decided to get a leave for this evening as we will likely be staying in the hospital for the next five nights.  Oh, and on that topic, there were a few strange things today but this one took the cake.  In the private room there is supposed to be a fold out bed for the parents.  When we had gotten up to the room this afternoon, it was completely empty, not even a bed for Nathan!  When we asked the nurse about the fold out bed, she said that we had to go scope out the other rooms and see if we could steal one.  What the hell is that about?!  We have to walk around the ped ward peering into rooms for foldout beds and take them if they aren't being used??  Ridiculous! This children's hospital cannot come fast enough.  I know our RUH staff is busy, but the service today was less than stellar and the facilities are degrading fast.  I think they are avoiding fixing anything until the new hospital comes.  Someone should tell them they have five years.  There are holes in the drywall in Nathan's room, all of the counters are chipped, the place is very grungy, the blinds don't work and this is our best hospital?  Sorry for the rant, I got sidetracked there.

On one other note, remember me saying there were 11 drugs?  Well there are now 12, Nathan will also be on  Allopurinol.  As the chemo kills the blood cells (mainly blasts) there can be a build up of dead cells causing uric acid in the blood plasma.  This drug prevents that buildup.

What did we learn today?  Seems like a lot but not much.  We will try to have a conference call with the transplant center in Calgary next week to discuss Nathan's further treatment.  We are still focusing on the next four weeks, and the changes that today caused in that protocol.  Back to the hospital and that beautiful room by 9am.... hopefully we'll find a bed to steal tomorrow.