Second induction phase - Day 5

It's been a while since I've made an entry in my journal.  I think it's for many reasons - one of which is that I'm tired.  I do have a lot of thoughts I should still be putting down - so that in the years to come I could look back and remember accurately what were my experiences - but I think it is taking a mental strain on me.

The last few days have been absolutely wonderful.  Since Jonathan started his second round of treatment - he has been doing really great.  This experience during his second round of chemotherapy is so different to the first one that it's like comparing night and day or black and white.

Here are the sequence of events as I remember them.  We were told around 7:30 pm on Wednesday that our room was ready.  Since Jonathan was in the play room having fun, we decided to stay there until closing time, at 8 pm, before heading to his room.  We finished moving everything to his room around 8:20 pm, including bring up the suitcase and other bags from the car.  Instead of hooking him up immediately to his IV lines, we decided to (try and) give him a bath because from our last experience he was in too much pain for him to get a running water bath, but instead got a cloth bath - which isn't really a bath but is better than nothing.

Around 9 pm we were all settled and the nurse started to take his stats and hook him up to his IV lines.  When Jonathan gets his anti-cancer drugs - they use both of his central lines - one line to deliver the anti-cancer drugs and the other line to deliver his various anti-nausea medications.  For this second round we decided to start him on his anti-nausea medications right away - so Jonathan was getting three anti-nausea meds around the clock.  The three meds were staggered so that he was receiving at least one med every two hours.

We had learnt much during the first experience and coupled with my meeting with the pain management team - we've decided that we are not going to be conservative parents anymore.  The thinking was to always try and give him enough medication so that he feels good and instead of concentrating on fighting the pain or discomfort, he can concentrate on playing, having fun or eating.  Given that this was a long term treatment plan - it made complete sense to go that route.

So around 9:30 pm on Wednesday night they started his hydration treatment, i.e. Jonathan had to get hydrated for two hours before starting on the anti-cancer drugs.  This was also the first time that both Gabby and I stayed overnight with Jonathan.  We say other parents do it - although there is a policy that says only one parent could stay overnight with the patient - so we asked the nurse and they said it was okay.

All I know is that I woke up in the morning and found out that Jonathan didn't start receiving his anti-cancer drugs until 4 am and 6 am on Thursday morning.  The 4 am was the combination of vincristine and doxorubicin, while the 6 am was the cyclophosphamide.  Apparently Jonathan took a little longer to get hydrated hence the delay.  I didn't really mind too much because it meant that he would have gotten another restful night.

Around 9:30 am was when Jonathan woke up and the day went very well.  Jonathan ate for most of the day, was talkative and in good spirits, and played well.  We were a little surprised, but very happy that he was going so well.  We thought, maybe the side effects of the anti-cancer drugs have not really kicked in as yet.

Jonathan woke up around the same time on Friday morning but this time he was not too eager to eat.  I also noticed that he was not very active and was keeping very quiet - definitely not the Jonathan from yesterday.  Around 10:30 am he told me that he had to poop but nothing came out.  Around 10:45 am I decided to brush his teeth and had just finished brushing his tongue when he threw up.  This was the first time that Jonathan threw up and he vomited so much that it spewed on my clothes as well - just to give an idea as to the quantity that came up.  He actually filled up the small container about half-way and by that time I had called for a nurse to help me and I got a bigger container.

Around 12:30 pm another nurse who had treated us in the past was recommend that Jonathan could go on another anti-nausea drug - and with my new ideas on pain medicine and the like - I was all gun hoe for it.  So around 1:30 pm Jonathan was now on four anti-nausea meds and by 2:30 pm a little of the Jonathan from yesterday started to show.  He started back eating, talking, and playing.

By this time we found it was unusual for Jonathan to be so active - at least compared to his previous induction cycle and started to discuss it with the nurses (and doctors).  Apparently some kids improve a lot for their second induction because during their first induction cycle they are normally sick from battling the cancer besides having to adjust to the anti-cancer drugs for the first time.  In Jonathan's case he was under real pressure from the tumor before he started his first cycle.  He had a lot of tumor related pain and was not eating with fever and other complications that got worse over time.  His first cycle seemed to have reduced the tumor somewhat so that this time around he does not have to deal with quite as much tumor related activity.

The other (medical) thing that happened during this rounds is that blood started to flow out of his central line.  I guess since he was more active there was more pressure being exerted by his blood vessels vs the flow from the combination of the vincristine and doxorubicin that his blood flowed out into the IV.  So what they had to do was attached another IV fluid bag to his line using a Y connector to create more pressure flowing into his body.  On all three days that he was in the hospital - Thursday, Friday and Saturday - we had the experience of his blood flowing out into the IV line.

The last (medical) significant thing that happened during this round is that both his central lines got clogged.  It was around 8 pm on Friday night when the nurse realized his lines were clogged.  They tried to push saline solution down the line to verify whether it was clogged and the syringe was not moving.  The option was to use a drug (cannot remember the name) that is inserted into the line and clears the clog.  The only problem was that Jonathan's intake of the anti-cancer drugs - specifically the vincristine and doxorubicin was interrupted.  The two nurses that were attending to him wanted to put a peripheral line in Jonathan so that while the drug was working to clear the line - it required at least 30 minutes - he would still be getting his anti-cancer drugs.  The only problem is that they would have to stick Jonathan in the arm to insert a peripheral line and that would not have gone well.

Well ... the night was already going crappy that I put my foot down and insisted that they call the on-call doctor.  I was even 'partially' blocking the door-way and told them rather flatly to get the on-call doctor ... because I didn't understand why they could not wait 30 minutes.  The short story was that the on-call agreed with me ... they didn't have to stick Jonathan and they would wait for the drug to clear the line.

By this time the charge nurse came in and he started to prepare his lines.  The charge nurse is actually a cool guy and we like him - having met him during our first stay.  During his preparing - he decided to do a pull, i.e. attempt to draw blood, from Jonathan's central lines and he noticed that one of the lines was not clogged.  So Jonathan was able to resume his intake of anti-cancer drugs while we waited for the other central line to clear.

By 10 pm that night - everything was clear and working properly.  By the way - Jonathan was most active on Friday night.  He was literally like his ole self.  So much so that I had to ask the on-call doctor if there were any drugs that would have been making him hyper.  Unfortunately there was one - some sort of steroid or the other - so that was a partial reason why he was behaving like his ole self.

All in all - this second induction phase went very well.  So much so that Jonathan was released on Sunday afternoon - the same day he received his last set of anti-cancer drugs - around 6 am to be exact.  His stay at home has been going fairly well as well.  We are hoping that he does not develop any mouth sores or fever and that he can do his recovery at home instead of the hospital ... but only time will tell.

One of the things I have noticed is that I am taking Jonathan's successes one day at a time.  I know some people would like to believe the current signs may be a sign that he is doing well (overall) - but my outlook is instead to look at each daily success as a success at this point in time.  My reading on other neuroblastoma patients do not paint a good picture and I cannot build up too much hope and feel it all crashing down later - because if that happens I don't know if I can handle it.  Instead I take it in baby steps.  I just say, "Lord, thanks for this good day, I hope tomorrow is even better" AND it also means one less day of pain and suffering for Jonathan.

As I end tonight's entry - Gabby and I have come to the realization that we are under stress (medically it's called depression and anxiety) and so we are going to see a psychologist - starting tomorrow.  The hope is that the physiologist will help us deal with these new changes in our lives and help us cope with it better.