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.