First round of accutane treatment

It's 8:50 am and for the first time in months, I've finally had a great sleep!  For the first time I actually slept through the entire night without waking up.  I feel so refresh and alive, it's unbelievable.  I'm in the hospital with Jonathan, having spent the weekend with him.  I've also spent the nights with him during the week as well - started on Wednesday night.  It's been nice, and at least this time, I didn't have to get the comments from Jonathan about 'not wanting daddy to stay here, or not wanting daddy to spend the night'.  It also gave Gabby a chance to have a break as well.

Going back to the beginning of last week - here are the sequence of events as I remember them.  On Sunday morning, Gabby noticed that Jonathan had a fever.  It had cross the 101 mark and if Jonathan had neutropenia then it would have meant an instant trip to the hospital.  Since he wasn't neutropenic - we were not sure whether he should have gone in to ER or not.  So after calling the pediatric oncologist on call - he wanted us to bring Jonathan in so they can do some tests but unless the tests showed something - he would be released to come home.

By Sunday evening, Gabby and Jonathan came home, but on Tuesday we got a call that one of the blood cultures grew some bacteria so we were supposed to come back into the hospital ASAP to be admitted.  So there you have it - we've been in the hospital since last week Tuesday and will hopefully get released on Monday or Tuesday.  This, unplanned stay at the hospital has definitely put a damper on the Christmas season.  Actually the entire season of Christmas has been totally destroyed!  This is the first year in many years that I didn't put up any lights outside.  The good thing is that I don't feel so bad about starting Jonathan 2nd phase on the day after Christmas day - cause I figure it's already a lost cause so no need to fret anymore.  I'm hoping that for next year's Christmas we'll be able to make it up : ).

Jonathan also started his second treatment - receiving the accutane medicine.  The first couple of days did not go well!  His dosage is to get three tablets twice a day.  Unfortunately, the only way this medicine is delivered is via tablets and there isn't a liquid form so we didn't have an easy way to put it down his NG tube and we knew getting him to take it via his mouth was going to be a big challenge.  The thing with accutane is that the tablet is really a gel capsule and a thick capsule at that.  The capsule is actually protecting the medicine which is in a liquid form inside.  The thing is that extracting the liquid from the capsule and putting it in his NG tube was not a recommended solution for two reasons: first, the medicine loses it's potency the longer it is exposed to air and light, and secondly, the medicine is actually very oily and thus doesn't mix with most liquids - cause oil and water doesn't mix - so what actually happens is that the medicine gets stuck inside his tube and never reaches stomach.

The good thing is that the day for starting his accutane treatment was the same day Jonathan got admitted so the nurses AND one of the doctors saw how resistant Jonathan can be for taking any medication via his mouth.  They even tried the, hold down and block the nose trick and I heard that Jonathan put up a good fight.  When I think about it - this is not something I should be proud of - but it always brings a smile to my face that it normally takes about four nurses to hold Jonathan down.  To me - it shows how strong he is - how strong his will power can be.  This is a good thing now - but when Jonathan becomes a teenage - I'm not looking forward to it : (.  After a couple days of trial an error we have finally gotten a solution that works.  We extract the liquid from the gel capsule and mix it with Saflour oil.  Mixing with the oil allows the medicine to dissolve and we can then put it in his NG tube.

On the Saturday before he went into the hospital - 10th - we went to an event hosted by the cops of San Jose and Sunnyvale.  The event is called Cops Care and is hosted by their foundation for helping kids with cancer.  The president of the foundation is a cancer survivor himself when he was a teenager.  Well the event was tremendous!  Both the kids and us (or at least me) had a blast.

I still remember the day clearly, on Saturday we were being released and the hope was that we will get out early enough so that we can go to the event.  We had to reach by Yahoo offices by 12:45 pm and then we would be bused over to the NASA Ames center to the police hanger to continue the rest of the festivities.  From the day before - we made arrangements for Jonathan's GM-CSF to start at 7 am so that when it finishes by 9 am - we'll have enough time to be discharged and leave for Yahoo.  So, at 6:30 am both Jonathan and I were up.  Jonathan was up for a different reason - he had to poop!

Around 9 am, Jonathan started to complain about his stomach hurting, and although I was eager to leave, I wanted to make sure he was fine.  Around 9:30 am Jonathan feel asleep and woke up just after 11 am.  During the time he was sleeping I figured that his stomach hurting was probably due to him waking up too early - but there were times I though he was not going to wake up in time for us to leave - because I was NOT going to wake him up.  So, by 12 pm we were ready to leave the hospital, and true to form we got lost along the way and Gabby had to call the organizer to get the proper exit from HWY 101 and the remaining directions.  Once we arrived - it was a blast.  At Yahoo there was pizza and drinks for the family.  The kids also got to pick out some Yahoo toys.  While there, we saw some police motorcycles and after asking one of the cops whether Jonathan could sit on one so I can take some pictures - we did.

After eating - Jonathan and I went for a walk - because we found out that we weren't actually leaving until 1:30 pm - so we had some time to kill.  We had seen some fire trucks on our way into Yahoo so I was hoping to find them so Jonathan could take a look.  To our surprise they were actually giving people a ride in the fire truck.  So Jonathan sat in the front seat and I sat in the back.  We also got to see a Ferrari and some police cruisers.

It was then time to head over to NASA.  We all boarded the bus - Jonathan and I on one side and Gabby and Arielle on another side.  The cool thing was that we got a police escort to the base.  Four motorcycles and one cruiser.  It was neat.  In the beginning - before we reached the highway - the policemen on the motorcycles would alternate and block traffic at the intersections we came up to - although there really wasn't much traffic.

When we arrived at the base - as we exited the bus, we walked through some fake snow - really soap bubbles - and as we entered the building - we were greeted to people lined up on both sides clapping.  It was great!  Other things that happened were having Winnie the Pooh, Tigger and Scobby Do arrive via two helicopters.  Santa also came by helicopter as well.  It was a really great event - I'm impressed by the amount of work that went into organizing this event.  It was a great way to start off the Christmas season.

First round of immunotherapy

It's Saturday morning and I'm sitting on a chair in Jonathan's room, listening to him breathing while he sleeps.  We got up early this morning, just before 7 am so his body decided that it wanted to 'reclaim' the sleep it didn't finish get from last night : ) coupled with the fact we probably didn't go to bed until close to midnight.  I'm hoping he wakes up soon because the discharge papers have already been done and we are hoping to go to an air & Christmas show being put on by the police department - Cops for (Cancer) Kids - or something similar.  We are supposed to me at Yahoo headquarters and then they will bus us over to NASA airbase to the hanger for the police department.  There the kids will meet Santa, check out the cool helicopters and planes and have a grand ole time : ).  Seeing that we've never done this before - I'm fairly excited to go as well.

So rewinding time - here is the sequence of events as I remember, since my last journal entry.  On Monday (11/28), Jonathan had his bone marrow aspirate (biopsy).  For this test, they were going to take four samples, instead of two, and also take bone and bone marrow so that we can get positive results.  They even made sure to do a special test - an immunohistochemical stain called 'synaptophysin' used to stain bone marrow biopsy cores so that we can be sure of detecting even the trace amount of cancer cells.  On Tuesday he had a CT scan and also got injected with the radioactive isotope for the MIBG scan on Wednesday.  Our biggest concern on all the days that Jonathan had tests were regarding Arielle because I didn't want to take any more time off from work so it meant that Gabby had both kids with her.  The problem is that when Jonathan goes under anesthesia, for the recovery phase, they don't allow kids into that ward, so we weren't sure what was going to happen.  But, as luck would put it, Gabby got the 'ok' to take Arielle into the ward each time.  We figure the real reason behind the ok is that Jonathan is a kid who doesn't care who is around, if he wants his mommy or daddy, he can be very stubborn and very LOUD, and we figure that the easier option for the nurses were to let Arielle come into the ward : ).

On Wednesday afternoon we got the results from his biopsy.  It was still positive, but at approximately less than 5 percent, so a very small amount indeed.  For once in my life, getting positive results was good news, because it meant that Jonathan is guaranteed to get the ch14.18 (immunotherapy) treatment and I didn't have to worry about hoping he was randomized on the study.  On Saturday he started taking the GM-CSF, a medicine that promotes his immune system, and three days later, on Tuesday (12/6) he started receiving the (chimera of mouse and human) antibodies.

My biggest fear for the ch14.18 study was that receiving the antibody treatment is a painful experience.  When a patient is receiving chemotherapy, the anti-cancer drugs work by attacking fast growing cells, but doesn't differentiate between good and bad cells, so that's why one of the side effects is hair loss.  When a patient is receiving immunotherapy, the treatment process has a side effect of attacking nerve cells - hence the pain that can be felt throughout the entire body and hence my fear.  Of course the patients are given drugs to counteract the pain, in Jonathan's case he got morphine.

So, around 2 pm on Tuesday, Jonathan started to get the antibodies.  They are delivered as a fluid via IV through his central line.  The dosage started at 5 (don't know the unit of measurement) and increased by 5 units every half hour until he got to 20 units.  So at 2 pm - he was at 5 units, at 2:30 pm - he was at 10 units, etc, until at 3:30 pm he was at 20 units.  Once he is up to full strength - then he gets 20 units for an additional 4 hours.  My fear was that he couldn't 'ramp' up to the full dosage because another parent was telling me about his son's experience where at 10 his son would become uncomfortable, and at 15 his son would be crying out in pain, so they had to stay at a lower dosage but given over a longer period of time.

With Jonathan, he was able to ramp up to the full dosage on Tuesday and Wednesday, but on Thursday and Friday he only went up to ~ 15 units.  The good thing now is that it's done - we have completed cycle 1 of the immunotherapy - 5 more to go.  Next week Jonathan starts another treatment - the cis-retonic-acid treatment - but I'll talk more about that next week.