Immunotherapy Round 3

I've finally gotten into a pattern for Jonathan's immunotherapy treatment.  It involves my taking him into the hospital to check-in, usually on Sunday evenings, then spending the nights with him during the week.  This is more convenient that my other pattern because I get to spend time with Jonathan, have a shorter commute to work (if I drive), and be more in touch with Jonathan's day to day treatment at the hospital.  Although I have a shorter commute, I still take a hit with going into the office because by the time I can actually leave the hospital for the office and depending on the particular mode of transportation I use, it usually still screws up my commute so it's not really an advantage.  But, on the bright side, I get to spend time with my son AND give Gabby a break - although (sometimes) she feels the break might not be necessary.

This third round has been proceeding quite well.  I've known that the 1st, 3rd, and 5th rounds are easier than the 2nd and 4th rounds, but so far Jonathan is handling it quite well.  As an aside, the 6th round is not a true round since there is no immunotherapy drugs given - just accutane.  The medical team has also decided not to ramp up to the full dose of ch14.18, so instead of going to 20 ml per hour, the maximum given is now 15 ml per hour.  This means the pain due to the ch14.18 does not become unbearable for Jonathan but the length of time it takes to transfused is longer.  I think the medical team has also figured out the right mix regarding pain control with morphine.  Now Jonathan gets 1 mg per hour with a 1 mg per push on the button with a 5 minute timeout.  Normally he doesn't have to start pushing the button until well pass halfway into the transfusion process.

An interesting thing happened during the first day and a half of this cycle.  When Jonathan was first admitted his hemoglobin level was around 10.6.  This blood sample was taken around 8 pm on Sunday night.  They took another sample at 6 am on Monday morning, and the hemoglobin level was around 9.8.  Since his hemoglobin level was below 10 - they wanted to transfused him with red blood cells but I pushed back saying that one of those tests was suspect and since they had to do another blood sample at 6 pm - I'll defer to making a decision till then.  Well, the 6 pm blood sample, taken on Monday evening, came back with a hemoglobin level around 12.4 which means Jonathan didn't need a blood transfusion.  I'm a bit puzzled by the vastly varying results for his hemoglobin level but not a critical issue for me to follow-up on.

Switching gears a little bit - we got some information last week that helps us put Jonathan's current tumor levels into perspective.  The amount of tumor cells remaining in Jonathan's bone marrow is less than 5%.  That means it's so small that it's hard to count - so there isn't another counter range below 5%.  What is significant is that in order to detect this small amount of tumor cells - the medical team are using a special staining test.  Tests that were not available a couple of years ago.  This means that if this was five years ago - Jonathan would have been (erroneously) declared in remission or free of disease - but then a couple years later he would have had a relapse.  One belief I've heard from our oncologist is that a relapse probably means that they never really killed ALL of the cancer cells ... so in a way it's good that they have these new tests.  Unfortuantely there may still be undetectable tumor that this staining test will not pick up - but it does provide new hope in trying to combat this disease.

So, the plus side is that the amount of tumor cells remaining in Jonathan's body is very, very small.  To me, this is significant news and a cause for a little celebration!  The negative side is that there is still a small amount of tumor cells in Jonathan's body so he's not out of the woods yet.  To be level headed about this - it means that there is still no guarantee that Jonathan will be cured - because this amount of tumor cells - even though it is so small - can still be resistant to treatment and / or become aggressive and start spreading and growing again.  We have a consult with our primary oncologist on Thursday morning to help me figure out what this news really means and how I can put this into perspective with the wider picture of what other neuroblastoma patients have gone through.

The biggest excitement will be at the end of the week when we make another road trip.  We're going back to Yosemite by my friend's parent's house and with Gabby's folks in town, we'll have a bigger crew.  So it will be Gabby's folks, our family friends in Hollister and us.  We're all looking forward to it, given the amount of fun we had the last time and with it being dead-on winter - the kids will have another opportunity to play in the snow.  I've already 'warned' Gabby's parents that the kids like to have snowball fights - so beware : ).

Findings from round 2 re-evaluation and moving forward

Wow - a lot of information over the last couple of days.  Last week Thursday - 19th - Jonathan was scheduled to have his bone marrow aspirate and MIBG scan done.  This involves him getting anesthesia which requires him to not eat anything solid / food from midnight.  Well, I don't know what happened but we - both Gabby and I - clean forgot about taking off his feeding pump and it wasn't until 7:45 am that I realized that he was still hooked up!  It meant that Jonathan couldn't get any anesthesia and I had already planned for Jonathan and I to (both) have hearing tests done on Friday (27th).  I was so disappointed because I was looking forward to the hearing tests that I had taken a day off - but with us forgetting to stop his feed it mean the bone marrow aspirate had to be pushed to Friday.  The only good thing that came out of this mistake was that Jonathan got sedation, instead of anesthesia, to do his MIBG scan.  Since he did so well on sedation then for future scans that's what they'll use.

The other significant thing that happened was that on either Tuesday night or Wednesday morning - I forget which one - Jonathan and I was having a discussion about whether he will stay still for the MIBG scan so that he doesn't have to get anesthesia or sedation (in this case).  Besides getting the usual response that he doesn't want to stay still and that he wants the sleepy medicine - I found out on Thursday afternoon - while preparing for the MIBG scan that one of the reasons for the push back was that Jonthan was having major issue with his biopsy. (On a side note - that is a really long sentence).  Apparently he wanted the sleepy medicine because he didn't want to feel the needles go into his back, he doesn't want to feel the cuts.

I was completely taken aback - because I don't know how he can feel any needles going into his back.  Normally he is put to sleep, the biopsy is done and he is woken up.  Of course I tripped out.  I immediately penned an email to our nurse practitioner and our oncologist with my concerns and to investigate whether he gets enough 'sleepy medicine' when the procedure was being done.  The problem was - I didn't know if the problem was that he goes in for a procedure and wakes up with pain in his back - where the two holes are done for drawing out the sample of bone marrow.  In any regards - the experience - perceived or not - needed treatment.  So we've in the process of getting Jonathan to see a psychiatrist.

Shifting gears completely - we got the results from his MIBG scan and biopsy results.  The scans came back clear - which was excellent news.  Keeping in mind that his previous two scans were also clear but the significance was that we didn't know if the (bone) pains he was getting up to five days after finishing the IL-2 and ch14.18 treatment were due to the cancer returning or due to the IL-2.  I think even our oncologist was a little concern and with the MIBG scan coming back clear (or negative) it means that there is no new tumor involvement.

His bone marrow aspirate results were a little interesting.  Everytime that Jonathan gets an aspirate done - it involves taking two samples from his lower back.  This is the first time that one sample came back negative while the other side came back positive with marrow involvement of less than five percent.  The thing is - we don't know if the sample that came back negative is due to sampling error or whether the ch14.18 protocol is working.  We've been told not to read too much into it and it's sound advice.  I'm just ecstatic that the pain he was experiencing during the second round wasn't due to cancer involvement - cause that would have just crushed me to find out that it's getting worse.

The last piece of good news (at least for this journal entry) is that Jonathan's appetite has returned.  Although Jonathan still gets his NJ feedings every night - we suspect that since it's an NJ tube vs an NG tube - with the feeds emptying into the upper regions of his small intestine vs his stomach means that he would get the feeling of being full.  In any regards, although his appetite has returned he doesn't eat enough for his body's needs since his intact has to be 1.5 times a normal person's daily allowance.  But - all in all - it's been a good week or so ...

Recovering from Round 2 of Immunotherapy treatment

What a rough two weeks it has been.  The IL-2 drug really gave Jonathan a beating but today is the first day I can actually start to relax a bit and think that he is finally recovering from this round of treatment.  On Thursday night (5th January) Jonathan started to complain about pain in his legs.  Actually by his knee but fortunately it did not last long and I never gave it much thought.  On Friday morning - Jonathan complained about both his legs hurting and it was so intense that he was crying out in pain.  The disturbing thing was the pain was reminiscent of his bone marrow (cancer) pain just before he was diagnosed with cancer.  The scary thing was wondering if this pain was due to his cancer coming back, an infection, or a side effect of the IL-2.

To top it all off, we found out that Jonathan had another bacterial infection - detected from his blood culture, plus a bacterial infection in his stomach - which causes him to have diarrhea.  This is one time I didn't mind staying at the hospital because with the infection in his stomach - he poops every hour or two and it isn't easy to clean because of how watery it is - coupled with him being in pain and very weak - going to the toilet was not an option.

The pain in his legs coupled with the two infections delayed our release until Tuesday (10th January) afternoon and it wasn't until today did the pain in his legs finally stopped.  Since the pain in his legs was migrating - our doctor didn't feel it was due to an infection so that left us with two options - either a side effect of the IL-2 or his cancer has returned (with a vengeance).  Since the ch14.18 protocol is so new - none of the hospital staff had any knowledge about the typical side effects, how long they would last and what is the norm.  I remember asking - how long should we keep him on the anti-nausea medicines?  To which the reply was - we don't know - because the IL-2 drug is so new.

The main bit of information we really wanted to find out was whether past patients who had this treatment also experienced any leg pain so many days after the treatment ended.  Of course not knowing this until today was a major 'headache' as our minds would race on hoping it wasn't the cancer returning.  Actually it was Gabby's mind that was racing more than my own : ).  We did find out that there were other patients like Jonathan who had leg pain up to five days after receiving their last dose of IL-2 and it so happens that yesterday was the fifth day - so - keeping our fingers cross - that the leg pain truly doesn't come back and then we can chalk it up to the side effect of IL-2.

With the terrible experience of round 2 - I've made a request to have our doctor request from the study team that the dose of IL-2 for his fourth round be reduce - because I don't think I could handle seeing Jonathan get 'mashed up' so much.  Besides the leg pains, and the nausea, Jonathan had headaches - only when he was getting the ch14.18, and high fevers for the ENTIRE duration of this treatment.  The fevers were a side effect of the IL-2 and ch14.18 and with his NG tube still not being placed it was quite a task to get him to take his medicine in his mouth.

We resorted to mixing his grape flavored Tyenol with grape juice but Jonathan was able to taste it or feel the texture of the medicine in the juice.  This trick got cold quickly - but it did allow us to go a couple days of giving him Tyenol via his mouth.  Since he didn't have his NG tube - Jonathan also went without feeding of any kind for a week and half.  Actually, last night was the first night that he got his regular feeding of Pedisure.  The only problem with this round of feeding is that we have to use a slower rate since he has a different kind of NG tube.  This NG tube - instead of ending in his stomach - end in the upper region of his intestine.  Since there is a weight at the end of the NG tube and it's in his intestine - this means that this NG tube is harder for him to vomit out so at least we wouldn't have to worry about having to place it all the time.

Next week - Jonathan goes for another evaluation of his cancer.  He is getting a bone marrow aspirate done, coupled with an MIBG scan.  We are hoping that the bone marrow aspirate (truly) comes back negative and that we can say that he is NED, i.e. free of disease - but we've been disappointed so many times in the past that I'm not going to be getting my hopes up to high.  Even if the tests comes back negative - we still have 4 more rounds to do - just to make sure we get rid of any non-detectable tumor.

Round 2 of Immunotherapy treatment

This round has been a bit rough for Jonathan.  Whereas the first round went with relative ease, there are more side effects that are taking a little toll on Jonathan.  I guess it all started last week when Jonathan had to get interleukin-2 (IL-2).  During the week Jonathan had one or two bouts of vomiting and this was unusual.  Even when we went by our cousins for the New Year - Jonathan had another two to three bouts of vomiting with multiple occasions of feeling nauseous.  It wasn't until we checked back into the hospital this week that I confirmed that one of the side effects of IL-2 is nausea.  So now, Jonathan is on round the clock Zofran and Benedryl to help with the nausea.

To complicate things, his treatment this week included getting IL-2 AND ch14.18.  So now Jonathan has to deal with the pain that comes with getting ch14.18.  At least this time the medical team has decided that they wouldn't ramp up to the highest dosage - 20 ml per hour - but instead stay at 15 ml per hour.  Everytime they ramp up to 20 ml per hour - the pain becomes to much for Jonathan (even though he is on morphine) and they have to end up dropping back to 15 ml per hour.  There is no real disadvantage to using the slightly lower dose - other than the delivering of the medicine takes longer.  I think the real risk with ramping with ramping up to 20 ml per hour is that the amount of morphine he needs causes his blood pressure to drop / plummet so besides having better pain management, the medical team also don't want to deal with the blood pressure issues as well.  Unlike the previous cycle - in this cycle he has also been having round the clock fevers - another side effect of his treatment.  To make matters worse - his NG tube came out over the weekend and with Jonathan's reluctance to take any medicine orally - it's been a real challenge to get him to take his Tylenol.

I know I've also been reluctant to have him on his NG tube and though I was delaying putting it in on Monday - by Tuesday night I wanted it back in - because we needed to get his fever under control (at least from a pain management perspective).  The problem was that on Tuesday night Jonathan had some nose bleeds so by the time we tried to put the NG tube back in we ran into problems.  The first problem was that we had difficulty getting the NG tube in, and when it finally went in, Jonathan got into a coughing fit and was coughing up 'a lot' of blood.  In the end we ended up pulling back out the NG tube.  We suspected that there might have been a blood clot in his nose - hence the difficultly / resistance experienced with putting it in and the subsequent bleeding that followed.

Since then I've been reluctant in putting it back in but I have asked Jonathan on two occasions whether he wants the NG tube put back in and he has said no - both times.  I am a bit surprised to get the no response but I suspect it is due to the last experience and also because he is weak from the fevers.  Plus not getting any nourishment surely doesn't help either.  The only consolation I have is that we just have today (Thursday) and tomorrow and then the worse will be over - at least for this round.

The last bit of excitement for this week is that Arielle got sick on Monday as well so we've had to drop her off by one of Gabby's friends.  Fortunately, Arielle has been recovering nicely and I'm just looking for this week to done.

Reflections on Christmas Vacation

It's the start of a new year and should be an interesting one indeed.  It's also close to the anniversary of our finding out that Jonathan had cancer and it's a date that will be stuck in my mind for the years to come - coupled with the fact that I have it recorded in my journal - so it's not like I could easily forget it.  I look forward to this year with less pessimism than I thought I would have and with more hope and confidence about Jonathan's treatment.  But enough of that - we'll see how the new year unfolds.  What I really want to talk about is the Chirstmas season.

It's been an interesting Christmas for us.  With our home being in such a mess - especially with us not having enough time to 'keep house' - I for one - was looking to avoid being at home : ).  The week before Christmas - we were supposed to go to Yosemite - but with Jonathan having a bacterial infection in his line - those plans were ruin.  Fortunately, we were able to go to Yosemite on the Christmas weekend - and that's what we did.  We got the use of a house owned by the parents of a friend of mine - and it was 'da bomb'!  The original plan was to leave home around 11 am on Friday 23rd and hopefully arrive between 2 pm to 3 pm at Yosemite.  Well, given our track record for doing anything on time - when the kids are involved - we didn't leave until 2 pm!

So our road trip to Yosemite began - with a moderate amount of traffic on HWY 580 and the beginning portions of HWY 120 - but all it all - it was an awesome drive.  The house we were staying at was in a gated community and it was real nice.  There were deer and squirrels that came close to the house and it was so rustic!  The place was so quiet than during the first night I couldn't sleep well because the silence was deafening!

On Saturday we did a little grocery shopping and went into Yosemite valley.  We never actually reached the valley but on the way we passed a camping ground that was packed with snow and so we ended up stopping there with all of us spending some time to play in the snow.  Actually - it was Gabby, Jonathan and Arielle playing in the snow and me taking pictures : ).  The kids had a blast.  Arielle and Jonathan enjoyed throwing snow at each other - it was really fun.

On Christmas day - Gabby and I slept the entire day.  I probably got up around 9 am - had breakfast - and then went back in around 11 am.  I probably didn't get up until 3 pm!  To this day I'm still surprised that I slept so long and I never realized how tired I really was - and probably still am!  The most significant thing happened during Christmas eve (I think).  I remember lying on the bed with Jonathan - he was sleeping - and I wrapped my arms around him and was stroking his hair.  I remember reflecting on the year and saying to myself: thank God that I'm able to spend another Chrsitmas with my son.  I never thought I would have seen the day - especially with him being so alive and vibrant - and I was grateful for having him around another year.

On the day after Christmas - Monday - we checked back into the hospital to being round two of his immunotherapy.  Jonathan was doing so well on the new drug - interleukin-2 (IL-2) - that even though it was scheduled to finish on Saturday morning - the hospital released us on Friday afternoon so that we can finish his treatment at home.  Earlier in the week his cousins came over to visit him at the hospital.  I have cousins living in San Francisco - and the rest of that family - who live in Illinois and Wisconsin - came over.

Well - we decided to spend the New Year's weekend by our cousins - so on Friday - after being released from the hospital - we all went up to San Francisco to spend the weekend - at least - until Sunday morning.  It was a blast!  I cannot remember the last time we sat down for a meal with family and there were over 15 people to feed : ).  It was really nice.  The kids had so much fun - having their cousins to play with.

So - all in all - the last two weeks were really nice.  Didn't spend much time at home - and thoroughly enjoyed ourselves.