Delays for round 5 - bacterial infection

This has been an interesting week.  The original plan was for Jonathan to be admitted on Sunday - 26th March - to start his immunotherapy treatment on Monday - 27th March - but, unfortunately, that didn't happen.  On Sunday afternoon we 'discovered' that Jonathan had a fever.  Just after 12:30 pm, Jonathan's temperature was around 102.3 F.  We took his temperature again just after 1 pm and it had risen to 103.7 F.  This wasn't good.  It meant that we had to call it in.  Since we were already going to be admitted to 2 North - I thought we could have just checked in earlier.  What I found out instead is that the 'Fellow' (and the Attending) wanted us to go to ER to have them treat Jonathan first, prior to being admitted to 2 North.

In the past, we've been told that one of the reasons why we go to ER is that 2 North cannot admit directly.  My thinking was that we could go directly to 2 North, this time, because Jonathan was already scheduled to be admitted.  Unfortunately that didn't happen.  The reason told to us is that ER would be more prepared to deal with a kid 'crashing'.  Now, the reason I was opposed to going to the ER was that it takes so long, and the doctors there are not pediatric doctors so their manner of treating kids is not the same, etc, etc.  But I was assured that it wouldn't take very long and that there was a new section in ER for kids.

Going off topic - so that I remember the events clearly.

When I first called to report that Jonathan had a temperature of 103.7 F I was in disbelieve that the doctor actually wanted us to go to ER and not to 2 North.  I made sure that he was clear with explaining his logic to me, i.e. 2 North not being able to treat kids that are 'crashing'.  Although his logic made sense - his logic is based on the 'general' rules and IMO if you have proper continuity of care, then doctors would be familiar with the specific traits and previous history of the patient.

My next call was to the ward directly, 2 North, to verify if the room was already available.  I wanted to verify if there was another motive for having us go to ER without telling us.  The room was not ready, and it was going to be ready by 6 pm because a patient was checking out that afternoon.  During this call with the charge nurse, the 'Attending' came on the phone and I got the entire explanation again - but this time I was told that there is a new 'wing' just for pediatrics - so our experience would be much better.

In the end - I don't think there were any other reasons that the doctors just wanted to play it save - and given who the doctors were that night - conservative - it made sense for their decision.

By Monday we found out that Jonathan's blood culture had grew out the 'staff' bacteria.  This made it the fourth time that Jonathan has gotten this bacteria.  He got it in rounds: 1, 2, 4 and 5.  By Monday night or Tuesday - we found out that his urine sample had also grown out another bacteria - so Jonathan was on antibiotics to treat both types.

Originally, when we found out that Jonathan was having fevers, we figured that they were due to Jonathan 'catching' Arielle's cold from last week.  During the previous week, Arielle had fevers, runny nose and some coughing, and try as you might to keep the sick person separated, once one person in the family gets sick, the entire family gets it.

By Monday / Tuesday, Jonathan started to cough.  It was one of those dry, non-stop, coughs that goes on and on and on.  By Wednesday, Jonathan's daily blood cultures were still growing bacteria, and with his coughing, the Attending wanted an X-Ray to rule out any possible pneumonia.  His X-Rays came back clear, but the 'Attending' had already decided to bring up the topic of taking out his Hickman catheter.  The thinking was that his catheter may be 'seeded' with bacteria and hence the reason why he keeps getting these reoccurrences.  It was also discussed during the other rounds as well - but in the fourth round we found out that the IL-2 drug, in about 10 to 15 percent of the cases, made kids more susceptible for getting a bacterial infection.  Here is the text we got about the effect from IL-2:

... it may not be that his line is colonized.  if you have been using both lumens at home it is more likely that it's the immunotherapy.  IL-2 causes a reversible defect in neutrophil function and patients are at an increased risk of gram-positive bacterial infections.

In the end, I decided that I would take the recommendation of the doctors and have his Hickman catheter removed.  For some reason my gut feeling was that it should be removed and since my gut feelings have been the one entity that has helped me to make all my decisions with Jonathan's care - I could not ignore it.  Mind you, this was not an easy decision to make, although the procedure itself is very simple and only lasts a couple minutes.  I guess what I was hesitant about was having to go through the process of taking it out and then putting it back in ... but too late now ... the decision has already been made.

Results from Jonathan re-evaluation

Today's journal entry is going to be easy.  I'm going to cut and paste both the email I received from our oncologist and some additional comments I made when I sent the email out.

Here is my introduction to our oncologist's email:

Hot off the press (literally).  As you will read (see email below), no clear indication of what the results actually mean.  I know some of you may want to read into it, i.e. a sign that it ‘appears’ that the amount of NB cells detected is lower – but in the cancer world that really doesn't matter.  The fact that there is cancer cells is the problem.

The big question – which Dr Twist doesn't know – is whether the cells are differentiating, i.e. have the NB cells been converted to the ones that cannot reproduce or have been ‘matured’.  Keeping in mind there are different ways to conquer this disease, i.e. killing the cells or removing their reproductive capability.  In Jonathan’s case – it can be that he doesn't really have any disease and what is remaining are cells that have differentiated.

The original email from our oncologist:

Hi Walter,

the pathologists needed the 'special stain' (synaptophysin) to see a few neuroblastoma cells in the bone marrow biopsy - they were mostly rare single cells, since they could only detect with that stain, they could not get a real look at the morphology of the cells to see if they looked like they were differentiating in any way.  They could find these rare cells on both right and left side, but again i think they were rather surprised since they would not be able to pick out single cells like this with routine staining (usually the cells grow in clumps of several NB cells together, so they are easy to visualize compared to normal blood cells).  so, I think it is fair to say that we are finding rare cells that are below the level of routine detection - true minimal residual disease - but understanding the significance of this is a harder question ( no good data when we are in this realm).  the MIBG is negative and the CT looks fine too.

Clare

So - what does this all mean?  To me - it sounds like a positive step in the right direction.  It appears that the amount of cancer he has is continuing to decrease and that the disease is responding to the treatment.  The biggest positive is that the stain test is still proving to be a viable component of continuing to detect whether Jonathan has disease - since I'll rather know he has disease than live in a fantasy world thinking he does not have any disease and then he has a relapse within five years.

This leads me on to another topic.  We - Gabby, the kids and I, have been battling this disease for over 16 months now.  I remember during our discussions with various relatives - early on in Jonathan's treatment - that the general thought that it will be through God that Jonathan will be healed and - if he isn't healed - then it's God's will too and maybe there is another purpose, i.e. his suffering might help in some small way.  Well, my response is that this is a load of bull.

Don't get me wrong - I'm not saying that I don't believe in God - I do believe in God.  What I don't understand is that why does EVERYTHING have to be attributed to God.  We - as human beings - have free will - and it's our own free will that causes things to happen in our lives - so why can it not be that people live or die, get cured or not cured because of the luck of the dice, or the science of medicine!

Waiting for results - evaluation of cancer

We're slowly coming to the end of Jonathan's ch14.18 protocol treatment and occasionally my mind drifts on wondering what is the next stage?  Does he get declared NED - no evidence of disease - or do we have to go onto another protocol / another treatment plan?  For some reason I'm not really phased by it and this may be due to the fact that even if his results come back  negative and Jonathan is declared NED - we will never really know whether all the tumor cells have been eradicated.  We wouldn't know whether Jonathan will have a relapse and we'll have to go through all this treatment again - in the years to come.  So - instead of being ecstatic about any news - my mentality is to just move through life and take what comes - going with the flow.

Last week was the week for Jonathan's evaluation tests - to determine whether the remaining tumor cells in Jonathan's body has increased (not likely), stayed the same (more likely) or decreased (somewhat likely).  The medical team conducted three tests on him - a CT scan, an MIBG scan and a bone marrow aspirate (or biopsy).  The result that I'm really waiting on is the bone marrow aspirate.  Hopefully, we'll get those results by the end of today or tomorrow and it will be another data point to determine Jonathan's care.

On the good news side - we've finally decided to go on Jonathan's Make a Wish trip.  So - we'll be heading to Orlando, Floriday for two weeks in the beginning of May 2006.  Originally we were going to leave closer to mid-May and stay about three weeks - that way we would have had time to visit relatives in Florida, but since Jonathan's sixth round finishes on the 14th May - we have to be back during that week so the end of protocol tests can be done.  Also - we didn't want to travel in June because we wanted to avoid being at Disneyworld for the summer vacation - too much crowd.

So - our plan is to have two sweet and relaxing weeks in Orlando.  Make a Wish is covering 1 week and we're covering another week - to extend our trip.  We've been talking to the kids about the upcoming trip - but whereas Arielle is excited to go - Jonathan is a bit apprehensive primarily due to the fact that he has to get on a plane.  For some reason he's afraid of his ears hurting and I think it has to do with a time when he traveled as a baby - to Trinidad.  If it wasn't for the plane ride - Jonathan would be more gun-hoe.  In any event - we try to talk to him about it regularly and show our enthusiasm and assure him that everything will be alright.

This weekend we are taking the kids to see a Monster Truck rally (or show) and then Jonathan starts round 5 of his immunotherapy treatment.  On Friday he starts getting the GM-CSF - infused in his line for about two hours a day for 14 days.  The first dose is done at the day hospital while the other two - on Saturday and Sunday - will be done at home.  On Sunday night he gets admitted to start getting the ch14.18 over the next four days.  If all goes well - which it usually does for this type of round - Jonathan should be out by Friday and hopefully over the weekend we'll be able to go to the opening of Bonfante Gardens.

Recovering from Round 4 of Immunotherapy

Whew - last week is over!  On Wednesday night - when I came in for 'my shift' - I told Gabby to sleep in late on Thursday.  I know she was very tired and with her not sleeping well in the nights, the extra hours in the morning would definitely help.  So I told her that she could aim for 12 pm and then I'll head into the office.  Well, it's a good thing I stayed that late that morning.  While the doctors were preparing to round - I found out that Jonathan's liver enzymes were way off the charts.  The normal values are around 40 - Jonathan's were around 400 - ten times the normal amount!  Although we expected his liver enzymes to rise to maybe double the amount - ten times was a huge jump!

With the enzymes being so high - it meant that his liver had too much toxicity to deal with - so the team got the okay from the study panel to take Jonathan off the IL-2.  If his liver enzymes went down sufficiently the next day - then they will restart the IL-2.  Unfortunately (or unfortunately) it didn't go down so Jonathan just had his ch14.18 on Friday and we were discharged on Saturday.

The funny thing was that since after his 2nd round - I kept telling everyone - we need to decrease the amount of IL-2 he will be getting for his fourth round.  I told our nurse practitioner, our primary oncologist and nobody agreed with me - even Gabby!  Gabby and nurse practitioner had some cock and bull story about they don't want to reduce his chances of being able to eradicate his disease, yadda, yadda, yadda.  Our oncologist didn't want to change it because they had no 'evidence' aka medical necessity, from the last round that it needed reducing.  Well NOW you have the medical necessity!

Yet again - I've made a decision that proved to be right.  This takes me back to the stem cell transplant when TWO Attending Doctors wanted to take out Jonathan's NG tube because they felt he was at risk for fungal disease and with his non-existent immune system - could possibly have killed him.  One of my concerns was that if we took it out - we wouldn't be able to give Jonathan any oral medication that he needed on a daily basis for his treatment.  In the end I stood my ground and we left the tube in and (fortunately) things went well.

So with this episode of the amount of toxicity - I'm concern about stressing out his liver so much so that it stops working (non-medical speak).  Jonathan is getting his labs done today - so we'll get a sense of where his liver enzymes are and whether he can start taking the accutane.  Although the protocol stays that he should start today - I've very opposed to it right now - so much so - that I deem this as a critical issue - an issue in which I MUST be convinced in order for Jonathan's treatment to move forward.  This time I would be putting my foot down - including risking taking him off the study - although I haven't quite reach there as yet.  Ok - enough ranting.

The other interesting thing that happen was during the time the doctors were rounding on Thursday - remember I was staying late that day so Gabby could rest.  I guess what made it interesting - but I only found out afterwards - was the team - especially the Resident that had to present - thought it was going to be an easy, i.e. step in the room, do their thing, and then leave.  The Resident didn't expect to be engaged in a conversation where the parent knew a lot about what was going on and can question the validity of their actions.  Afterwards I had to chuckle - because I did give the Resident stress - so much so that the Fellow had to jump in.  But in the end - it was all a load of bull crap.  The sad thing is - it would be nice if these doctors would come back and say - Mr Seepersad, you were right!

I must mentioned the bull for my own records: with Jonathan needing extra air to get his oxygen levels up - the team wanted to verify that he wasn't getting pneumonia.  They thought that maybe he had fluid in his lungs - hence the need for extra air.  The problem was that in order to verify, they needed to have a chest x-ray done but I'm opposed to having Jonathan do unnecessary procedures especially if the cumulative effect might have (negative) long term effects.  We decided that if Jonathan could stay off of the extra oxygen then we may not have to do the x-ray.  So around lunch time I turned off the extra oxygen and Jonathan never needed any more air.  We didn't end up doing the x-ray.

But life goes on.  That's why I don't waste my time trying to become friendly with the doctors.  I maintain a strict professional level with them and keep them on notice.  I think these problems arise because since Stanford is a teaching hospital - you never have the same group of residents for each stay.  For each of our stays, this year, we've had totally different groups of residents.

Next week Jonathan is being re-evaluated to see if any progress was made.  On Monday he has his CT scan.  On Wednesday he gets the contrast for the MIBG scan.  On Thursday he gets his MIGB scan and we're not sure if his bone marrow aspirate will be done at the same time.  So, by the following week we'll get the news.  I'm almost expecting it to be positive, i.e. still have tumor cells, but we'll see.  Even if the test results come back negative - there is no guarantee that it's correct because the negative result can be due to sampling error.

Day 2 of Round 4: Pressure ...

Here is the sequence of events as I remember them.  Sunday night was a bomber.  For some reason the day before I have to go to work - I usually don't sleep very well - although on Saturday night I was able to.  I had already schedule to take one of the vehicles to the dealer to check out the speedometer so the plan was that Gabby would take the vehicle in with the kids and then head up to Stanford for Jonathan to get a blood draw.  The blood draw was for labs for his admitting into the hospital later that day.  Of course with our not sleeping well (yep - Gabby too) the plan got screwed up.  I think I got up around 4:30 am and Gabby couldn't go to sleep until 5 am.  What ended up happening was that I took the vehicle in to the dealer and then drove up to the office.  On my way to the office I dropped off Jonathan's blood sample since we are (sometimes) allowed to do the draw at home.  This also means that Gabby got a chance to catch up with her sleeping while I was out.

Later in the day we found out that although Jonathan's counts were good - his hemoglobin level was less than 10 so he would have to get a blood transfusion when he gets admitted.  By 9 pm we had reached to the hospital - Gabby and kids coming from home and I was coming from San Francisco.  As is the (new) norm - I spend the nights with Jonathan - so I figure Gabby must have left around 10:30 pm with Arielle to head home.  I slept soundly until around 5:30 am when I found out that Jonathan already had the blood transfusion and that he had spiked a fever around 5 am.

Spiking the fever was a bit strange - especially since he didn't start the ch14.18 and I was hoping it was not another bacterial infection.  The two nurses I asked didn't have a clue what could be causing it and it wasn't until I had an informal chat with the pediatric doctor (senior resident) did I realize that it could have been a reaction to the blood transfusion.  I must mentioned that by Sunday - we had started round the clock dosage of Zofran to prevent Jonathan from having an episode of vomiting.

Tuesday night was a bit rougher - for Jonathan at least.  They didn't start his ch14.18 infusion until after 10 am - which meant he didn't finish until just before 8 pm.  By the time I arrived at the hospital it was just after 8 am and the interesting things I noticed was that his pulse was hovering around 175 and his pulse ox (amount of oxygen his body is getting) was hovering around 92.  Every so often his machine would beep - signaling that one of his measurements have crossed a threshold and for the next two hours I was thinking it was his pulse rate but later found out it was his oxygen rate.

As an aside - the interesting thing about the monitoring machines is that when it goes off in the room - it also goes off in the nurses station.  There have been some instances in the past where we could ignore the alarms - and usually what happens is that we change the threshold values - and depending on the nurse you get it's easier to get this done that others.  The funny thing is that if you get one of those hard-arse nurses who don't want to change the threshold value - after getting the alarms going off all the time in the nurses station - it normally 'annoys' (I use this term affectionately) the senior nurses which forces the hard-arse nurses to make the change.

Anyways - getting back on track - Jonathan's situation was not improving and his oxygen rate was hovering around 90 with his pulse rate climbing to 180 - sometimes peaking to 190.  The major concern was the oxygen rate because we had to make sure his body was getting enough oxygen.  I wasn't really concern until a nurse came in and started to check out Jonathan.  She decided that she'll start some oxygen going by sticking a tube in a cup and putting it near his face so his body will get pure oxygen to breathe to try and increase the pulse ox rate.  At one point in time Jonathan was actually holding the cup to his nose and I guess he got tired of it that he finally decided that we can use the breathing tube to deliver the oxygen directly to his nose.

I was kind of glad we were able to make the switch - but as with all things - it's better than Jonathan decided we should use it rather than forcing him.  We slowly got the oxygen rate up but it required Jonathan staying on oxygen for the entire night.  His pulse rate was still high and we believe that's because of the fevers he's having.  The other news I got last night - around 5 am this morning - was that Jonathan's blood culture grew out a positive for a bacterial infection.  So here we go again with the antibiotics and dealing with another infection right in the middle of ch14.18 transfusion.

I should point out that since yesterday evening - Jonathan has been sleeping - probably because of a combination of the morphine and adivan - and probably because of the amount of stress his body is under.  It's good that he's resting through this - but it's painful to see because I can clearly see he's weak and under stress with the treatment.  The other thing that happened early this morning was that he started to complain of leg pain again - but this time I know it's because of the ch14.18 and not because of increased tumor activity.

The concerning thing is that usually - Jonathan doesn't get hit with the side effects until the third day.  What's disconcerting is that it's happening only after the first day - so I'm not looking forward to tonight and the next two nights after that - because I know it's only going to get worse.  What's been interesting is that I'm not phased by any of this.  I was thinking to myself - last night - that a year ago if I found out that Jonathan had to get oxygen - I'll be freaking out - now it's like - no biggie.  The good thing is that I like the doctor we have in the nights - probably because he is a senior resident - so he isn't spanking new - and he doesn't feel like he knows it all : ).