Thanksgiving Holiday

We just finished the Thanksgiving Holiday.  For some reason the holidays was depressing.  I've been taking my anti-depressants now for almost a week and a half and originally I started off with half a dose for a couple of days - to make sure I didn't have a negative reaction - but now I'm up to full strength and for some reason I feel like if I'm not taking enough.  The last couple of days were crummy - I was in a weird sort of mood where I didn't want to talk to anyone or at least easily provoked into a quarrel with Gabby.  I know the last couple of days were not fun for her either.

Gabby spent an entire week cleaning up the apartment.  This was a huge task because all the rooms were messy - all three bedrooms, living room and dinning room.  She got some help from a friend on Saturday but it was a great feat.  The sad thing was that she didn't quite get it all cleaned up - although it was mostly clean - so on Thursday morning - Thanksgiving morning - I got angry that we still had stuff to do - especially since we had to go out by friends for Thanksgiving dinner and my brother and his family were coming back with us to spend the weekend.  Of course that got her ticked off too - since she spent a lot of time - a huge effort - to get the place cleared up.  So I guess I sounded ungrateful!  Which was unfortunate!  She was so angry that she almost didn't go to the dinner with us - and I almost didn't go too - but in the end we went.  By Saturday things started to settle back down and improve.  I think it was good having guests over those couple of days - a good distraction so we wouldn't have to chew each other heads off.

So it's the start of a new week and this is the week we cram all of Jonathan's tests to re-evaluate this cancer so he can start the ch14.18 study.  I learnt last week that we were not guaranteed to be on the study.  So my celebration was short lived.  Apparently when the three principal investigators of the study gave our oncologist the 'green light' it was to allow Jonathan to be signed up for the study but he still had to either prove he had cancer or be randomized.  Although we had a biopsy proving he still had cancer since the test was done during his radiation therapy it was inadmissible for the ch14.18 study.  So Jonathan is signed up for the study and he has to get three tests (biopsy, CT scan and MIBG scan) done this week so that he can start the ch14.18 study next week.  Tomorrow (Monday) is his bone marrow aspirate or biopsy.  This time they are going to take four samples instead of two - just to make sure that the tests come out positive.  The problem with doing a biopsy is that it depends on where they sample.  They can get a sample that has cancer and likewise they can get a sample that doesn't have cancer.  The problem is that we don't want a sample that comes out negative because then Jonathan will be randomized on the ch14.18 study which could have the potential of him not getting any immunotherapy treatment.  On Tuesday he has a CT scan and also gets injected for his MIGB scan on Wednesday - with a backup scan on Thursday if necessary.  Hopefully we'll have Friday as a day of rest - with the weekend - and then the start of his immunotherapy treatment the following week.

I think the biggest problem for me is the constant reminder that Jonathan may not make it.  That my son - who is active and playful and almost like his 'ole' self - may not be around for Christmas in 2006.  As much as I try - I just cannot shake the thought and I think it is this thought that is bringing me down.  I thought my anti-depressants would have helped me - but so far I guess they are not helping me enough.  It's not to say that I'm actively thinking about it but rather, I'm passively thinking about it.  It's like a pain that you get, that doesn't go away, but becomes like a dull pain that gradually gnaws at you.  I hear about people saying that I'm handling things well but little do they know - plus it's easy to put on a happy face.

I read about another child who went through active treatment for more than 6 years and is finally cured!  Six years!  I cannot imagine doing this for so long - it will definitely drive me nuts.  Hopefully this week will get better - but I doubt it.  I think this week is going to be a week where I'm going to be a zombie - going through the motions just to survive.  I have to figure out a strategy where I'm there for my family but still able to work and bring in an income.

Plowing Forward

Wow!  What a week!  A lot of life impacting decisions have been made and I feel pretty good about them.  We're fortunate that we've had access to quite a lot of resources to help us with making the decision - the internet, parents who went through a similar experience, our doctor at Stanford and our therapist.  I'm just amazed how everything finally pulled through.

In the end we decided to continue treatment for Jonathan's cancer and hopefully during the course of this treatment his cancer will get cleared.  When the re-staging tests were done - three out of his four tests came back negative.  The CT scan, the bone scan and the MIBG scan all came back negative.  The bone marrow aspirate came back positive and in retro-spec we are lucky that it did come back positive.  The challenge with performing the bone marrow aspirate is that when they take a sample - since the amount of cancer cells that Jonathan has is small - the sample area could easily have been an area that was NOT infected and his test results would have come back negative.  The problem with that is that Jonathan would have been (falsely) de-cleared free of disease when in actual fact he would still have disease.

Although we would still have some treatments to do to finish up Jonathan's treatment (if he was cleared free of disease) - we would not have looked at immunotherapy due to the fact that it is a painful treatment option.  By knowing that he really still has disease - then it allows us to be more aggressive now rather than later.

So - we decided to do the immunotherapy.  We had three choices - but only two at Stanford.  We had the 3f8 - which is not done at Stanford, the ch14.18 and the hu14.18.  All three immunotherapy treatment options involve Jonathan getting a mouse antibody that has the ability to bind to a chemical - GD-2 - on the cancer (neuroblastoma) cell.  Then his body's immune system receives additional drugs so that Jonathan's antibodies start attacking the cancer cells.  Without the mouse cells binding to the cancer cells - there is no way for Jonathan's antibodies to attack the cancer cells.  One of the big differences between each of the three studies is that the 3f8 consists of cells that is 100% mouse, the ch14.18 cell is 75% human and 25% mouse, while the hu14.18 cell is 98% human and 2% mouse.  Another difference is that 3f8 is old school technology (developed in the 1970's), while ch14.18 was developed in the 1980's and the hu14.18 was developed in the 1990's.

Since we decided to do the immunotherapy our choices were really narrowed to either ch14.18 or hu14.18 - since the benefits for going to SLOAN for the 3f8 wasn't strong enough.  We had a initial problem in that Jonathan may not have gotten to do the ch14.18 but we found out last night that we have the green light.  The original challenge was that in order to do the ch14.18 the patient must sign onto the study before 100 days after stem cell transplant.  Also - the patient must be finished with radiation treatment and repeat the re-staging tests at least five days after radiation treatment.  The problem was that Jonathan's 100 days is on 12/2/05 and his radiation therapy doesn't end until 11/18/05 - so the first day he can start his re-staging tests is on 11/25.  The challenge was one week to schedule all the re-staging tests might have been difficult - but in the end it all worked out.

If we couldn't have gotten on the ch14.18 study then we would done the hu14.18 - which doesn't have the time restrictions.  The reason we wanted to do the ch14.18 study instead is that this study actually alternates between two studies - the immunotherapy and using cis-retonic-acid.  With cis-retonic-acid - this therapy focus on differentiating the cancer cell - meaning the cells are 'matured' so that it cannot reproduce anymore.

Alright - I've spent an hour writing this - so I'll call it quits for today.

Change of mind

It's amazing how my mind is so fickle!  Maybe for a good reason - who knows?  When I first received the news that Jonathan still had cancer in his bone marrow - my decision was that most likely we were going to stop active treatment - enjoy the next couple of months - and let Jonathan pass away.  My concerns were that there were no guarantee that his cancer will be cleared and that the next round of treatment - called antibody or immuno-therapy treatment - would be very painful.  I didn't know if I wanted Jonathan to go through immuno-therapy and still have cancer - that would not have made sense.

Last night (Thursday) we had a session with our therapist.  The main goal of the session was to discuss how to articulate to Jonathan that he may have more therapy (in case we decided we still wanted to do the immuno-therapy) and also the possibility of his dying.  During the therapy session I got some brilliant insights.  One such insight was that if we decided not to do any more active therapy - then the next couple of months we will spend with Jonathan would have been our second change to say goodbye to him - as a family.  My reasoning was that in mid-January of 2005 his symptoms came so fast and furious that by the time we knew he had cancer he was already in a very weaken state.  If he had died, we would not have had a good way to tell him goodbye.  I saw the present as an opportunity to spend time with him and to prepare us and allow us to say goodbye while he transitions to his other life.

After we came home - I had another brilliant thought.  Just before we were going to bed - Jonathan's machine for his feeding went off.  We discovered that the tube had actually disconnected from his NG tube so the machine was pumping his pedisure all over the bed instead of it going into his stomach.  I decided to hold Jonathan in my lap (on a chair) while Gabby wiped him off, wiped the bed and changed the sheets.  I didn't have my shirt on - so I was bare-back and Gabby took off his top.  At one point I had Jonathan curled up in my arms with his head resting against my chest and it was his skin touching against my own.  It was such a touching moment especially being able to kiss his head (which has hair incidentally) that I decided there and then that my son is not going to die.  I decided that I was not ready for him to die.  I decided that we have to try one more treatment, that I have to do more research and get more educated because I need to give him a chance to fight this thing.  I want my son to be with me in this life for a little bit longer.

The next day was interesting.  Although I woke up at my usual time to go to work - I decided to take a later train.  By doing this it gave me the opportunity to check my email.  In doing so - I decided to do a quick search on ACOR website to see what information and experiences other parents had to share about the various immuno-therapy options.  Well that lead to me calling a parent out of Texas, who then gave me a number to call a doctor in SLOAN, which lead to calling another parent in Southern California and by the time I was finished I was confident that I wanted Jonathan to do the immuno-therapy.

Jonathan's next therapy is calle ch 14.18 - here is a quick blurb I found on ACOR website given by a parent:

14.18 is a protein found in mice that have developed an immunity to human cancer. It is specifically attracted to the GD2 antigen that sits on the surface of neuroblastoma cells. The antibody 'binds" to the NB cells, and thereafter recruits other elements in the immune system to come and destroy the cancer cells.

Ch14.18 is a human-mouse "chimeric" antibody directed against GD2.  The antibody can be administered alone or paired with other elements like GM-CSF (granulocyte-macrophage colony-stimulating factor, also called sargramostim) or IL2 (interleukin-2)  that enhance their anti-cancer activity.  (GM-CSF stimulates the production of white blood cells and platelet precursor cells.  IL-2 stimulates the growth of certain disease-fighting blood cells in the immune system.)

3F8 is the antibody that MSKCC (Sloan Kettering) is testing in at least one phase II study.  It is only available at MSKCC.  It is derived 100% from mice and, like ch14.18, is directed against GD2.  However, the ch14.18 is a partly human protein (it is approx. 75% human and 25% mouse in composition), and because it has human components, it is less subject to early rejection by the body and therefore stays there longer to carry out its anti-tumor activity. Ch14.18 patients are less likely to generate a neutralizing "human anti-mouse antibody" (HAMA) against the ch14.18 molecule than they might with the 3F8. However, both ch14.18 and 3F8 can lead to an 'anti-id' response, and there is some debate as to whether this anti-id response is helpful or not. (someone else will need to chime in on this aspect)

Presently ch14.18 is only available via the COG-wide phase III study, ANBL0032. To be eligible, patients must have completed COG 3973; OR be in CR (Complete response), VGPR, (very good partial response), or PR (partial response) after treatment "per" the A3973 protocol ("per" means that the child received the chemo regimen of 3973 but wasn't formally entered in the study) or per the POG 9341/9342 protocol or per the ANBL02P1 protocol PRIOR TO a single cycle of high-dose therapy and autologous stem cell transplant. (Please note the eligibility criteria were recently expanded. There are other criteria having to do with time since treatment and evidence of disease, so have your docs consult closely with the investigators if you are interested.)

0032 is also a randomized study, so only half of those entering with will get the ch14.18 antibody. This type of study is the only scientifically valid way that docs can prove whether or not the antibody has any superior effects to standard high-risk treatment.  It may actually prove less effective, so while it is human nature to assume that getting the 'next best thing' is improving our children's chances, we can't know this for sure until this study is completed.  Also remember that antibody therapy is not an easy ride - it can be quite painful and like any therapy, carries risks.

Received partial results

Hot off the press!  Jonathan had his normal radiation treatment yesterday morning and afterwards he was going to have a platelet transfusion.  Although he still gets platelets and red blood cells transfused - I can clearly see that the frequency of which he needs transfusion is diminishing.  It so happened that Jonathan's lab results showed that his platelet count went up by 1 yesterday - instead of dropping - so in the end they decided not to transfused.  A good thing too since the blood bank didn't have much supplies of platelets so instead of Jonathan getting one bag he was going to get half a bag.  Apparently the blood bank had a busy night and a lot of the 'stock' was used out.

So - while Gabby was waiting for the platelets to come up (remember she didn't get the results from the lab as yet so she was still waiting) she found out that our primary oncologist wanted to see Jonathan.  We figure we'll ask her how the test results look so far (since there were three tests that were done already).  His fourth and last test is being done this morning - the MIGB scan.

Well, we found out that his bone marrow aspirate test showed that Jonathan still had cancer cells in his bone marrow.  So Jonathan is NOT cancer free.  This is disappointing news and we are figuring out our next steps.  There is one more treatment that we are considering and it takes about 6 months.  The word is - if he isn't cured after this treatment he wouldn't see next year's Christmas.  If we don't do anything, i.e. stop treatment right now - he definitely wouldn't see next year's Christmas.  So right now we're trying to figure out how best do we juggle this treatment and the must do things we want to do, including going to Trinidad and his Make A Wish trip.

Not looking forward to results

It's Monday!  One and a half weeks before we get the test results to find out if Jonathan is free from disease!  I'm not looking forward to it.  Actually, Gabrielle is not looking forward to it either!  Jonathan's last test is on Thursday - his MIBG scan and then after that we have a meeting with our oncologist next week Wednesday around 10 am.  All I know is that it is going to be in interesting day - regardless of whether the news is good or bad.  If it's good - I'll just want to celebrate - if it's bad - well - we'll see.

This weekend was a stay home and rest weekend.  Got a little bit of chores done and we did a little picnic on Sunday afternoon but nothing much to talk about.  I know Gabby is trying to do a major push this week to get things organized at home and the plan is to try and make this weekend a family weekend.  Not sure what we'll do but whatever it is - it will be spent out of the house.

We now trying to focus our attention on getting a baby sitter.  We already have a friend of Gabby's who will help with baby sitting in the nights - for the nights we want to go out.  I think our first date will be in about two weeks - we'll probably do something simple like dinner and a movie.  Our goal is to try and go out about once every two to three weeks.  We'll also looking for a baby sitter to come during the day - about twice a week.  This baby sitter will be more like a mommy's helping - so they'll be hanging out with the kids while freeing up Gabby's time to do stuff around the house or give her a little break from the kids.

Hopefully all of this helps us to start get more control over our lives.  It has been a rough year and it's time for us to start getting back in a 'controllable' routine.

Getting ready for reevaluation of cancer

Wow!  This is the 2nd week we are home as a family and it is nice!  The weekend was rather interesting.  On Saturday night we took a drive around the area to look at decorations for Halloween.  For some reason being at home was the worse thing to do - and going out was much better.  For the entire drive - the kids were playing continuously.  Jonathan and Arielle decided to play the "knock, knock, who's there" game and they would laugh and laugh and laugh.  I think they were being a bit too noisy for Gabby but since I am not with the kids 24 / 7 - it was easier for me to tune them out.  It's amazing to see how close Arielle and Jonathan are - but it's also frightening because if Jonathan doesn't recover from this disease it will be a huge loss for Arielle and I'm not sure how we will handle it.  I know this will be a big issue for her because whenever Arielle finds out that Jonathan has to go to the hospital, for example to do a test, she gets upset and doesn't want her brother to go.

On Saturday night I decided I really didn't want to be home on Sunday - so we called up our uncle and aunt and 'invited ourselves' over : ).  I don't think they minded - but I know it's not a good practice : ) and I know my uncle is reading this too (lol).  My uncle was kidding with me by saying that we now had too much free time and didn't know what to do with it : ).  Maybe that is true - but I think being at home is a bit depressing.  We have all the cleaning up and other chores to worry about - plus - when I'm home I'm either thinking about work, or going on the computer and not really spending time with the kids.  When we go out - then it becomes more of a family event.  So we ended up spending the entire day out on Sunday.  Arielle went to Sunday school - she had missed the last three sessions - and the coordinator was not pleased - saying that there are other people who are on the waiting list, etc., but I told her about our situation and she was cool.  Initially, Arielle didn't want to go, but afterwards she was so happy that I really think Sunday school is a good fit for her.  I cannot wait until she starts pre-K next school year as I know she'll do very good.

Onto a different topic.  Jonathan had a bone marrow aspirate and biopsy yesterday.  This test takes a sample of his bone and some bone marrow to measure for tumor cells.  Because they only take two samples - it's a hit and miss because sometimes the sample area could be free of tumor cells when in actual fact he can still have tumor cells.  He also had a bone scan yesterday - couple with his CAT scan about two weeks back - makes it three out of his four tests required for a complete reevaluation of his cancer.  The fourth and final test is the MIBG test and it's what I consider the most important one - because it was this test that showed that he has some update (cancer cells) by his left leg.  I'm hoping that his MIGB test gets scheduled towards the end of the week or early next week which would mean we'll have our consult towards the end of next week.

It's not a consult I'm eagerly looking forward to - because I don't know what I'll do if I find out that he still has tumor cells.  Gabby thinks that if I find out that he still has tumor cells that I'll want to do comfort care - but I'm not so sure I'll want to do comfort care as yet.  With Jonathan being home for the last week and a half - it's been hard for me to come to grips with the possibility of losing my son.  What makes it worst is that he has reverted back to be a daddy's boy : ) and it makes our bond stronger.  My take is that I'll wait until I hear the news and then think about it for a while and then make a decision.  The disappointing thing was that his auditory results came back last week and Jonathan's hearing loss got worse after the stem cell transplant.  He has lost a lot of the ability to hear in the higher frequency ranges so some letters like S and such he cannot hear too well.  They have recommended that Jonathan gets hearing aids - and although we knew about the possibility - I guess having it confirmed was like being hit with a brick.

I warned Gabby this time - that the way I react to things is different now than in the beginning of Jonathan's treatment.  I'm not as reactive as I used to be.  Now, I listen, digest, research (if necessary) and then decide on the course of action.  The difference between how I behave now and then was that my digesting period is much longer : ) - it's been five days and I haven't even called the insurance company to find out whether they will cover the cost of the hearing aids.  I've heard that they don't usually and that hearing aids are expensive - about 3k for each side!

So - what will I do when I hear the news?  Good question!  Amazing the idea is that I should go to church just came into my head - I clearly didn't think about that before - but what I do know will happen is that we will be taking a holiday in Trinidad.  So here is the plan - if Jonathan is NOT free of disease - we WILL be making a trip to Trinidad.  We figure it will be his last Christmas and his quality of life is worth the risk vs the suffering he will have to go through.  Don't ask me how we'll get to Trinidad - because I'm not seeing any sales to Trinidad on AA website - but I figure all will work out.  If Jonathan is declared free of disease or no evidence of disease (NED) then we will NOT be flying to Trinidad because it will be an unnecessary risk.  In that case - we were thinking of taking a holiday in mid-February.  Originally we were thinking that he could do his Make a Wish trip in February - but I think that will be too soon - so we may probably take a vacation in southern California - where we could drive instead of going in a plane - and enjoy ourselves at one of the theme parks.

Other than that - work continues to be interesting.  There are new developments - not good ones - but I'm hoping it works out for the better over the next couple of months.  I'm trying to figure out how to slow down time so we can try and enjoy the Christmas season.  Someone pointed out to me that by taking paid family leave for one day a week - I was taking a 20 percent pay-cut - but I refuse to think about it.  My main thoughts are - what are we going to do this weekend!!!