Relapse is confirmed!

When you have multiple kids, you are told as parents that each kid is different. Even as newborn babies, the personalities are quickly noticeable and different. One of Jonathan's characteristics is that he has always been a kid who does not seem to focus on the long-term. When we were driving back from Disneyland and we told the kids that it looks like Jonathan's cancer came back, Jonathan was more interested in going back to his game, while Arielle's silence was noticeable. In some regards, Jonathan's innocence and "head in the clouds" type of personality is an advantage, but sometimes we worry about whether he is prepared enough for the upcoming weeks and months.

Recovery Room after Biopsy

Last week Wednesday (03/07) we met with Jonathan's oncologist and she confirmed the results of the biopsy and the scans indicate that Jonathan's Neuroblastoma has return. The confusing thing about Jonathan's relapse is the length of time that has passed - 5 years - before the tumor came back. What is doubly confusing is the places that the tumor has chosen to come back in as well. So far, it seems that is it only solid tumor that has return, i.e. there does not seem to be tumor in his bone marrow. Although we were originally treating this as slightly positive news, it turns out that if the tumor has come back in multiple sites, and these sites do not include the original site, then the fact that it is not in his bone marrow is somewhat irrelevant. The tumor has metastasize and this is cause for concern.

Most of the tumor detected is very small - averaging between 2 to 3 cm by 2 cm in size (yes the hospital always uses metric and not SI as their scale of measurement). In the neck area, there are multiple lymph nodes detected with the smallest being 1.4 cm by 1.4 cm and the largest being 1.5 cm by 2.7 cm. These clusters of lymph nodes together measure about 4 cm by 4 cm on visual inspection. Think of it like a bunch of grapes growing together. In the soft tissue adjacent to the spine, the size is 2.4 by 1.5 by 4.4 cm. There is also another spot by his liver and although it's tricky to tell whether it really is a site for tumor given the other two spots, we're going to assume it is and not bother to do surgery for a biopsy.

Now that we know that Jonathan's relapse has been confirmed, the rollercoaster ride begins.

Multiple Dreams and First Few Weeks

I have had the same dream about two or three times in a row. Normally, whenever I have an emotional charged dreamed I think about it for a few moments and then move on. My belief has always been that dreams are triggered due to one of the following reasons: an event that occurred during the day triggered it, your brain is trying to process some information, or divine inspiration. There are times when I'm surprised by the content in my dreams but when I analyse what occurred during the day I can draw the parallels of the events that occurred during the day and how it can be a trigger point to my dream. Although I believe in the divine, I also have my doubts that it happens when it comes to dreams so "divine inspiration" is few and far between.

I've been dreaming about Jonathan while on my (business) trip to China. Maybe it's because I have time to myself in the night so my brain can now process the events over the last few weeks, or maybe it's representative of the anxiety I feel while waiting for the results. Who knows, but what I do know is that I rarely have the same type of dream over and over again. I figure if it is my brain trying to process things, then it's time to journal because I have been ignoring the second step in my personal process, which is to spend a few moments to reflect on it and then move on. Unfortunately, I fly back to the US today so there is no way to tell whether the journaling ends the recurrence of my dreams or whether the hustle and bustle of being at home will be the thing to end it as well, or whether it is really divine inspiration :).

As I reflect on the last few weeks with Jonathan, I see so many parallel events to the first time we went through that it is disconcerting. The thing is, Jonathan has been going for re-evaluations every six months, and although we delayed his last evaluation by an additional 3 months, I'm surprise we can still be caught off guard. This thing is like a sleeping giant - it hides, grows and gathers force, and then bam!, it awakens and says, "here I am, feel my roar!".

Here is a summary of the events to date (and this unfortunately reminds me of my first post in 2005).

Two months ago, Jonathan started complaining of pains in his chest area. Within a day or so some the pains became migratory and moved towards his back region. We took him to the doctor who then recommended we get an x-ray. The wet read of the x-ray came back negative so we were not sure what to do next. The thinking was to wait a couple of days and then we'll figure out what to do next if the symptoms remain. One theory was that there may have been some sort of viral infection to the lungs and the breathing would cause the pain to be manifested through-out his upper body area - what would explain the migratory nature of the pains.

After waiting a couple of days, Jonathan reported that the pain was gone, but a few days later we got word from the lab that on a more detail examination (of the x-ray) they were seeing blurring along his lung area that was not present in previous slides (in the past) so they wanted to take another x-ray. Of course, by this time the pain was gone so we were not surprise to hear that the second set of x-ray was negative as well. At the end of this episode we figured, okay, issue resolved itself, it wasn't walking pneumonia or something like that so he didn't need antibiotics, all is or should be well.

A few days later, we found out there was a visible lump growing from Jonathan's neck region. The lump was about 2 cm by 2 cm in size and the feeling was that his lymph node was infected. I could clearly see that the family physician was confused or worried and the next best step was to engage with Lucille Packard Children's Hospital (LPCH) and get an appointment to see Jonathan's oncologist - Dr. Twist.

We have known Dr. Twist for 7 years now and I reflect back over the last two weeks very fondly. We have always said that although LPCH and Stanford can be very slow to respond at times, when there is an emergency, they can move faster than a speeding bullet! I still remember our consult with Dr. Twist like if it was yesterday. When she examined the infected lymph node she suggested he gets a CT scan as a first priority and we can try and schedule an MRI scan as it was time to start his next round of evaluation. She wasn't sure we would get the MRI scan scheduled but at least we can get the CT scan scheduled.

By the next day I found out we had both scans scheduled for Friday morning and it confirmed our general belief that Dr. Twist was worried about the activity occurring in Jonathan's lymph node. On Friday afternoon I got a call from Dr. Twist that they found the lymph node growth was not just one or two lymph nodes but was a growth that had "roots" that extended downwards. They also found anomalies on his liver and along his spine (not on his spine). The news both floored me and helped in ending my confusion that this could be a relapse. I remember telling Dr. Twist that I have never heard of a relapse for Neuroblastoma being confined to lymph nodes, but had always heard about it coming back in the spine area or other areas as well so it all made more sense.

To illustrate the speed at which things can happen at LPCH, we had a consult with surgery the following Wednesday, and Jonathan went under the next day. During all of this time the "lump" had grown from when we had first discovered it, so it was now about 4 cm by 4 cm. The plan was the surgeons would remove a lymph node, pathology would take a quick read, if any Neuroblastoma cells were found we would put in a central line, and the oncology team would do a bone marrow aspirate. As it turns out, pathology couldn't say they found any Neuroblastoma cells with a definitive yes so the central line did not get put in and Jonathan recovered fairly well after the procedure. We were told that the results would take a few days, especially since the weekend was the day after, and in the meantime an MIBG scan was setup since the isotope used had an affinity to Neuroblastoma cells and would light up the infected areas so we'll have a better idea of how extensive it is - if it even was Neuroblastoma.

Well, all the scans and testings are done and we are waiting for the news. Normally we say no news is good news but we know that our oncologist is out of town so this does not apply. I just want to know, is this Neuroblastoma or not, if it is Neuroblastoma what is the chemistry of it (is it still as aggressive as before), and if it is not Neuroblastoma, what is it?

Jonathan is in Remission

This is probably going to be my last post.  At least until three months from now.  I've been considering making the blog listable in blogger.com - more so as Jonathan is in remission.  Yep, you heard me correct!  Jonathan's last evaluation had all tests results as negative.  This is the third time his bone marrow aspirate tests were negative - even with the special staining tests from Stanford Hospital.  Also, the anomaly with the large uptake of the MIBG isotope does not appear to be related to tumor activity so the concerns from the second scan have been removed.

Here is the quote from an email from Jonathan's primary oncologist:

I think that ultimately we will call the MIBG scan as being ok.  the area of uptake in the liver has actually been there for a long time (almost a year, when i go back & look at the prior studies) and has not changed.  The nuclear med docs has been interpreting it as being activity in the bowel, but with the MIBG/CT images from last week it is pretty clear that it is liver.  However, the regular CT scan of the liver is normal (no abnormal lesions seen).  So I think the final answer from the nuc med docs will be that this is probably some kind of artifact or differential uptake in the liver, not tumor.

It's interesting that the timing of this news is at our two year Anniversary of when all this suffering started.  The main thing is that there is evidence to show that the cancer was steadily reduced and was getting less and less so hopefully this is it!  Although Jonathan is now in remission - we were given the opportunity to stay on active therapy for another six cycle ~ approximately 4 more months.  At the end of these six cycles Jonathan will have another full round of tests to evaluation whether he is still in remission or whether he has had a relapse.  Of course - if he has a relapse - I wouldn't consider it so.  For me, Jonathan must be NED (no evidence of disease) for at least a year before I consider that any results being positive a true sign it is that because the cancer came back vs a test from a previous evaluation being a false negative.

The timing of this news is good.  I think we - Gabby and I - have reached the end of our ropes with dealing with this treatment.  I had a big blowout with the primary oncologist a week after hearing the news - during a consult.  I was so mad I had to call a childhood friend to get his take on it - as he is a doctor as well.  What's funny is that I've always wished to be in the position where I can screw these doctors' over when they have a computer related problem, i.e. make them wait forever, don't take their advice, don't apologize when they are wrong, blah, blah, blah - but apparently other computer engineers are doing it for me :) 

I was telling this story to the family doctor that Gabby and I see and she was telling me that they are already experiencing it!  Their office recently went computerized and the transition has not been an easy one for them.  The few times I've been to the office after the transition - the actual visit takes longer because now they have to enter information into a computer during the visit - and of course - everyone is still getting accustomed to everything.  So, in a way, they are getting a taste, but it's not mean giving them the taste :( 

I guess this goes to show that it's really a good time for a break.  I know that if Jonathan's evaluation is negative in April - then we will definitely stop being on active therapy.  Although it's nice to be 'doing something' - it's more stress having to keep thinking about things -and we need a long break.

Results of re-evaluation tests

Interesting news!  This is the second time in a row that Jonathan's bone marrow aspirate (BMA) tests came back negative.  This is indeed a good sign - although I'm too numb to know whether I should be happy or not.  I think I don't hear enough (or any stories) about neuroblastoma survivors who have either not gotten a relapse and have lived to be an adult or survivors who may have had a relapse and is still able to live to be an adult.  My mind is too full of stories of neuroblastoma patients who are declared free of disease but develop a relapse - even after the major five year window has passed.  The only consolation I will have is that while Jonathan is declared 'free of disease' we will have a period of not having to do any treatments.  The only problem is that we could get lulled into a false comfort zone and hearing that he has a relapse later on would just be devastating.  I still haven't decided whether I will fight again if he does have a relapse.  I went through a period a couple weeks ago in which I was thinking that if his disease ever gets worse - we would do comfort care.  But, like all things, I'll cross that bridge when I reach it.

Although he has had a second negative result for his BMA - there is still one item that needs to be cleared up.  What follows is the text of an email from Jonathan's primary oncologist on her thoughts on his latest re-evaluation results.

The bone marrow was negative again - even with the synaptophysin staining - so we are 2 for 2 with clean results, which counts as a 'real' response to fenretinide, as defined by the study requirements - so that's great!

The MIBG scan is also probably fine, but there was a small spot of uptake that appears to be in either in the liver, possibly the gallbladder, or possibly retained within the bowel.  they needed to get SPECT images at 48 hrs to get a better view of it and unfortunately we couldn't get those pictures because they take longer to acquire & he couldn't hold still without anesthesia for that long.  When we went back & looked at his last few MIBG scans, this spot may have been there before, but it was chalked up to bowel activity (intestine running along the bottom edge of the liver) which is normal (the MIBG gets excreted via the bowel).  But the fact that it is present on several scans when you go back & line them up is both a little concerning and a little reassuring: active tumor usually does not stay exactly the same size over the course of months (that's the reassuring part) but its annoying that we have this spot now that we don't quite know what to make of.  Also reassuring that nothing abnormal shows up on the regular CT scan.  So to try to settle things, the next time he gets an MIBG scan we will do a special study called an MIBG/CT, where they get CT images at the same time as the MIBG & fuse the images so we can get 3-D localization of the spot that is hot on MIBG.  this test does not take the place of a regular CT scan, it just helps localize anatomy on MIBG scanning.

So its all good news so far, with the caveat that we need to sort out this finding on the  MIBG scan & we should be able to do that when we re-image him after the 6th cycle of fenretinide.

Jonathan has just finished his fifth cycle of the fenretinide drug and to date - he has had no visible or apparent side effects.  I'm so accustomed to having Jonathan go through some sort of 'hell' when receiving medicine that can threat him that it's a little strange to go through no hell with a drug that is suppose to help treat him.  I'm almost in disbelieve that this drug might actually be working - especially since everything is in an oral form and it's something we've been giving him at home.  I know we are slowly approaching our two year anniversary of fighting this disease and I'm curious to see whether Jonathan will be declared in remission when we reach that anniversary or not.  Regardless, I want to mark this anniversary with a special event - but I haven't figured out what it should be.  All in all it has been an interesting two years and I'm curious to see what 2007 would bring for us.

Struggling ...

I think we're biting off more than we can chew.  Or, maybe I was underestimating how difficult and time consuming it would be to have the kids in school.  Regardless, we are struggling to keep up.  When we had both kids going to daycare, before Jonathan was diagnosed with cancer, I couldn't remember it being this difficult.  I suspect part of the reason is that we are tapped out, but the hard part is that this is beginning to sound like a stuck record, i.e. being tapped out.  I almost feel like taking a month or two off from work and just spending time doing other things, for example, getting the house back in order, relaxing, exploring etc... but this is not something I would seriously consider right now.

In the past, and I still do it now, I've always been amazed at the ability of single-parents to raise and take care of their children and still go through life.  I wonder whether my situation is as difficult as their own or whether it is more difficult?  I think this is one of these times where not having family support is a disadvantage.  There is no - 'let's drop the kids off by the grandparents for the weekend', or 'let's ask the grandparents to take the kids to school for the next couple of days'.  The biggest thing that struck me was during our naturalization ceremony yesterday.  One of the presenters were reminding us (the candidates) how important this achievement is and to recognize the struggles that some people have had to endure to get naturalized.

Although the road to getting our permanent residency was not as difficult as most people, I do know our road to naturalization was a bit of a challenge.  We've had to go through two lay-offs - with the first lay-off happening during the 2001 recession and completely having all our finances wiped out.  I remember we almost had to leave California because no one was hiring and it was very difficult to get a job to bring in any income.  Does that mean our lives are any more harder than any other person?  I don't know!  The way I think about it is the stress that kids go through as they are growing up.  I remember, and what I see on TV helps re-enforces this, but when I was a university student (for example), I thought I knew what stress was - having to study for my engineering degree.  It's amazing how things are hidden from you as a child and you think your parents don't understand the stress you have to go through coupled with some parents telling you that you don't have any stress (at least compared to them) - is the picture that comes to mind when I try to put my life into perspective.  I frequently use this image when dealing with the kids.  I try not to belittle their life experiences and the stress that they are going through and I force myself to recognize that from their perspective they are dealing with as much stress that I, as a parent, have to deal with as well.

One of the things that puzzles me is how someone else story could provoke an emotional response.  When we (Gabby, the kids and I) went to the oncology (cancer) camp in the first weekend of September, there were morning sessions for just the parents.  I remember our first session on Saturday morning and each couple (or single parent) had to share their story, i.e. the story of their cancer child.  There was one other couple who had a child diagnosed with Neuroblastoma, and while the father started to go through his family's story, he started to cry.  For some reason that provoked a response in me as well - although I was good in holding back my tears.  I guess I was surprised that it would have provoked such a response and a part of me was a little disappointed that I was not able to bring it under control.

Besides myself, I can see how everyone else is struggling.  I feel it for Arielle as well and having gone through the oncology camp and learning about the effects on siblings, it has me more worried for her.  I guess this is one of those occasions where 'time will tell' and as with everything in the past I am just taking it one day at a time.

Another evaluation almost done

We've just completed all of Jonathan's standard tests to re-evaluate whether he still has cancer / tumor cells or not.  This time he had three tests done, the CT scan, the bone marrow aspirate and the MIBG scan (where he has the radioactive isotope injected into his body).  The CT scan and the injection was done last week Wednesday (11th Oct) with the first and second MIBG scan occurring on Thursday and Friday.  When we normally go for an MIBG scan, the second scan is always optional and we normally get a phone call at the night of the first MIBG scan to let us know whether we need to come back in for the second one.  This phone call is important not only to let us know that we need to come in, but to make sure that Jonathan remains NPO - doesn't eat anything after mid-night and stop drinking fluids about 6 hours before going under anesthesia.

Apparently this time, someone dropped the ball and didn't call us so we didn't keep Jonathan at NPO.  Around 1 pm I receive a phone call inquiring whether Jonathan and mom were on their way - to which I replied - nope.  What followed was an ensue of phone calls between various medical staff and myself.  Of course the medical staff recognized that they dropped the ball but they still wanted Jonathan to come in for them to try and get the scan with him awake. As an aside note: the only reason Jonathan goes under anesthesia for the MIBG scan is that this scan requires the patient to be still for anyway between 60 to 90 minutes.  Kids of Jonathan's age wouldn't be able to stay still so long so the normal procedure is to put them under.

Unlike the CT scan - which Jonathan does without anesthesia - Jonathan is adamant that he wants the 'sleepy' medicine, i.e. go under anesthesia for his MIBG scans.  Friday was no different, and when Gabby asked him if he'll do the MIBG scan without the sleepy medicine he said no and started to cry.  This was unfortunate and one of the things I know is that once Jonathan makes up his mind about something it is very hard to get him to change it.  The additional challenge in this case was that the idea of 'holding him down' wouldn't work because in this case we needed him to stay still and plus it was a scan so it wouldn't have been possible.  At this point I was asking Gabby, "do you want me to fight this battle and tell the medical team he wouldn't be coming?"

Gabby didn't want to have to make a trip to the hospital just to prove to the medical team that Jonathan wouldn't stay still.  They are supposed to take our word for it.  I fought the 'battle' well but in the end we got word that our primary oncologist wanted us to do it (regardless) - so Gabby took the kids to the hospital for Jonathan to get his second MIBG scan.  Afterwards I found out that Jonathan did the scan very well.  He lay quietly for the 15 minutes.  Apparently the reason he didn't put up a fight was that he was very tired and his back was still hurting from the bone marrow aspirate biopsy from the day before.  All I can say is that I feel like such an arse now.  I don't know if I'm going to battle for Jonathan's defense in the future.

We have one more test to do - an eye exam - but this test doesn't add any results for confirming whether he has tumor cells or not.  This test is to study the effect of the drug on the rods in the patient's eyes.  The last time we did the eye exam it was a very traumatic experience.  Both tests required Jonathan's eyes to be dilated but one of them required that contacts be placed inside his eye and subjecting him to bright flashes of light (and yes he was awake).  It required both Gabby and I to hold him down.  The silver lining for the tests on Wednesday is that he shouldn't be getting the (same) test with the contacts so hopefully it should be a less painful experience.

Dealing with Stress

What is stress?  How does one know if the pressures of being under stress has been removed or is lessening?  Apparently, for me, it is still there.  My therapist thinks I am very strong, i.e. can handle stress well but is this true?  For a while I was thinking that my stress levels would be getting lower but my therapist raised an important point - that by Jonathan having a chronic illness and not knowing which way it will go will forever be on my mind.  Not having any control and the possibility of the disease getting worse are important factors that are keeping my stress levels high.  In a way - the therapist is right.  Not a week goes by that I don't occasionally wonder about Jonathan's (future) outcome or having to deal with some issue regarding Jonathan's treatment.  I guess if I didn't have the worry about a family member having a chronic illness would have been one less thing to worry about and thus less stress.

I hate having to deal with this issue.  I thought my body and my mind would have adjusted and life would move on - but apparently it does not completely adjust.  Of course having to deal with stress is almost like the vicious circle of life.  It goes round and round and doesn't seem to end.  As my therapist says - having to deal with the birth of another child might also be adding to it.  Yep - it definitely is.  This could not have come at a worse time.  For a while I considered a permanent method of contraception but I have not brought myself to actually doing so as yet.  The thing is - if my situation remains the same - I definitely cannot have a fourth child - but at least I don't have to worry about that for at least another six months.

Like I said, the cycle of stress is like the cycle of life.  I suspect that with Gabby and I trying to adjust also means there is more stress in the home environment - especially when compared to other families who do not have a child with a chronic illness.  What this means is that we have less patience when dealing with the kids - which does not help the kids.  Over the last couple of weeks I've been trying to follow my therapist's advice in that I should be giving Jonathan positive reinforcement.  Instead of pointing out when he does something wrong, I should also point out when he does something right and commend him more often.  I'm also following the same strategy with Arielle but fortunately the same level of worry does not exist.

I do know that this cycle of stress has immobilized me a lot.  Every so often I consider whether I should be making a career change and know I have additional things to think about.  This, indirectly, is a bad thing as well, and it adds more to the feeling of not being in control.  Any decision I make now must always factor in Jonathan and his chronic illness.