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.

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!!!

Preparing for Radiation Therapy

Jonathan is home!  What a small but still significant statement!  After spending over two months in the hospital - we are finally at home as a family.  On Saturday Gabby checked out of the Ronald McDonald and came home around 5 pm.  Earlier in the day I went up to Palo Alto to help Gabby.  I took Jonathan to the day hospital for his 9 am appointment while Gabby finished packing the stuff in the car and checking out of the Ronald McDonald house.  As usual - Jonathan didn't want me to take him - he wanted his mommy to take him - but I eventually got him to calm down and allow me to take him to his appointments.  He was getting his second to last treatment for his fungal infection and was also getting a blood transfusion.

The interesting thing that struck me over the weekend was that it was amazing how things settled down so quickly with the kids.  Jonathan and Arielle just played, and played and played.  On Saturday afternoon - Gabby went out with her mom so I had the kids at home - and they were laughing and playing together so nicely - it was totally amazing!  I know Arielle enjoyed it immensely.  When it was time for them to go to bed - I forgot what it was like to actually have to put the kids to bed and to continual remind them that it was time to sleep (because they were still 'wired' from playing).

Jonathan's appetite has not returned to any great degree, so he is still on his machines to get nutrition.  He has a pump that is used to deliver his liquid food - Pedisure - via his NG tube (the tube that goes through his nose to this stomach).  He gets between two to three feeding sessions during the day - which is really 180 ml of Pedisure delivered over the period of an hour.  These two to three sessions are representative of his breakfast, lunch and dinner.  He also has a longer feeding session - which is getting Pedisure over a 12 hour period at the rate of 80 ml per hour.  This normally starts just before he goes to bed and goes continual during the night until he wakes up the next morning.  One of the main reasons for making sure he gets nutrition is that his body needs about 150 % of the daily recommended (calories, etc...) since there is a lot of healing going on.

Other than his Pedisure - he also gets IV fluid during the night.  So he has another pump that gets hooked up to his catheter and the IV fluid is to make sure he gets enough hydration because he is not really drinking anything during the day.  The cool thing is that both pumps are in (separate) back-packs so it allows Jonathan to stay mobile since it's easy to take around.  If he needs both pumps then Jonathan wears one (the pump for his Pedisure) and Gabby wears the other (for his hydration).

Switching to a different topic - I've decided to take the plunge!  I've decided to take paid family leave (PFL) by working four days a week instead of five.  It's going to start in the middle of November and continue for about twelve weeks, i.e. until the end of January.  I'm hoping to use this time to spend more time with the kids.  Gabby was telling me yesterday that Jonathan was looking forward to seeing me yesterday - but I came in rather late so it didn't quite work out the way I / we expected.

Next week Wednesday is the start of Jonathan's radiation therapy.  On that day we are having a mock up and simulation exercise and Thursday marks day 1 of 12 for the actual radiation.  So, by the middle of November, the radiation therapy should be completed and just in time for Thanksgiving : ).  Jonathan also has a biopsy on Monday which would be the 2nd test being done for his re-evaluation of his cancer.  He would still have two more tests - an MIBG and bone scan - and the results from all will let us know if Jonathan still has tumor cells or not.  I'm hoping for good news - so we can enjoy Christmas and prepare for his Make a Wish trip in January / February - but we'll see what the future has in store for us.

Day 54 - Upbeat

What a really nice weekend!  Last week Gabby and I decided that I would spend Friday night with Jonathan at the hospital - because she wanted to spend some time with her mom - who is flying back to Trinidad at the end of this week.  With Jonathan being in the hospital for so long - and my not able to contribute to spending time with him - Gabby didn't really get much of a chance to spend time with her mom.

It was during the week that I also got a brilliant idea - why not take my computer (desktop) to the hospital - so that way I can spend the entire weekend and at the same time get some personal stuff done!  So - that's what we did.  The original plan was for me to drop off the computer (and associated equipment) to the hospital on Friday morning and then head up into the office.  In the afternoon - I would come to the hospital and relieve Gabby - who would then spend the weekend at home and relieve me on Sunday night for me to go home.  Well - it mostly turned out that way except that I ended up taking Friday off.

I'll get back to the working thing in a moment - but my stay at the hospital was such a joy.  During my stay at Friday night - since I had the computer - the kids were on it playing games.  First when Arielle was there, and then afterwards Jonathan got a turn.  I think Jonathan was upset that Arielle was playing - because he wanted to play too - especially since it was the new Dora the Explorer game - but as upset as he was - he was still watching Arielle play : ).  The night was fairly enjoyable until it was time to go to bed.  Apparently Jonathan didn't want me to spend the night - but wanted Gabby to spend the night instead.  I was told that I can 'visit' but I cannot spend the night!  I know, I know, I deserved it.  For the last two months I have been away from the hospital and not spending time with Jonathan so I understood where he was coming from.  Incidentally, it was hearing his comments that have spurned me on to make some decisions about work - but I'll get back to that in a moment.

On Saturday morning - Jonathan was up early ~ 7 am.  I'm not sure if he woke up on his own or if the nursing staff woke him up - but since he was up - the nursing assistant decided to get Jonathan's stats -  his blood pressure, temperature, measuring his stomach, weight, etc.  I eventually went over by Jonathan's bed because he didn't look happy and was sitting up all the time - and I found out that he was still upset that Gabby didn't spend the night : (.  So I lay down next to him and he eventually lay down as well and we both fell asleep until around 11 am.  I think that it was after our morning nap when things got better and I didn't hear any more comments about wanting mommy to spend the night : ).

The remainder of the weekend was a blast - we had lots of fun - played games - including non-computer related games : ).  Jonathan is very good at making up his own games : ) especially with that great imagination of his.  I also learnt how to operate his pump to feed him.  So - another milestone we reached is that Jonathan doesn't have to get nutrition via his line (that runs to his veins) also called TPN but instead he can get nutrition via his NG tube that goes into his stomach.  We were really hoping that he would have been off the TPN for two reasons - it's more strain on his liver and his lines and ultimately his body is open to more infections.

With his feeding via his NG tube - he is getting Pedisure and he has to get the equivalent of 150 percent of his normal body needs - simply because his body has a massive amount of healing to do.  So - how it works is that he gets three major feedings during the day - to represent breakfast, lunch and dinner, and he gets a continuous feed during the night when he is sleeping.  I'm thinking of asking whether I can also get a juicer and give him things like carrots and other fruits and vegetables via his NG tube - but I'll see what the medical team advises.

So - today is the day that Jonathan gets released.  He will be heading over to the Ronald McDonald house.  Fortunately (for us) his stay will be short because day 60 is on Sunday at which time he can go home.  I've sent in a request to have him go home earlier - around Wednesday / Thursday - so I'll find out today what the doctors think.  I'm also taking tomorrow off (again) but this time it's because I have a cleaning crew coming in to our apartment to give it a through cleaning.  We need to make sure the place is really clean before Jonathan comes home - so besides the carpet getting a steam clean, I'll have the apartment get a good once over to remove the extra dust and such.

Hopefully by next week - we'll be together again under the same roof.  After his recovery - Jonathan's next procedure is radiation therapy.  They will be radiating his stomach area - the source of the primary site, and his leg - the remaining place of cancer prior to going in for his stem cell transplant.  His radiation therapy is supposed to last two weeks - with Jonathan getting radiated every day for about 10 to 12 days and will be done as an outpatient.  The doctors say that radiation therapy is a breeze - at least compared to his stem cell transplant - so hopefully that is true.  The major side effects are nausea, soreness at the site, and lack of appetite.  After radiation therapy then we'll have a another evaluation to determine whether cancer still remains.  We are both looking forward for this evaluation and I hope to God that all the results come back negative.  Of course, after the radiation therapy we still have lots more to do - but that's too far ahead ...

Day 49 - Mixed emotions

Juggling work, Jonathan's care and family responsibilities is definitely not easy.  A couple of weeks ago I was thinking of going on paid family leave - by taking about two days off a week - so only work three days a week - but changed my mind for a couple of reasons.  The two driving reasons were - a reduced scheduled means reduced income, and secondly it will affect my career path.  Now, it's a couple of weeks later and I'm getting back into the same problems I had a couple of weeks ago and I'm starting to revisiting whether I should really go on paid family leave.

What is driving me to make this decision is that I definitely need to spend some time with Jonathan - on average I spend about a couple of hours a week vs. my previous norm of spending the equivalent of at least three to four days.  Another reason is that I (really) need to give Gabby a break and spend time with the family as a whole unit - gone are the days where we will all be in the hospital.  My real wish is to not have to work for the next couple of months, or at least have the ability to work from home - but both are not options available to me.  The more I think about it, the more I need to take paid family leave, so I think my plan is to just do it.  I'll definitely investigate whether I can drop my schedule to three days a week.

Switching topics now - Jonathan is chugging along.  Since his second boast of stem cells - his counts have risen daily - very slowly for the first ten or so day and then a bit faster thereafter.  Monday (10th October) marked the first time his WBC went above 11 and his ANC was above 2000.  This means that he is not getting G-CSF everyday now - but instead of stopping it completely he is getting it every other day because he is fighting an infection.  On Monday, his labs came back with a positive culture for a fungal infection.  This is bad because in terms of the various types of infections he can get - viral, bacterial, or fungal - the fungal infection is the one you want to try and avoid.  With his positive culture - it also means his 'pick' line had to be removed - so now Jonathan has a peripheral line (inserted just above his hand) to get his IV fluids, medications and other liquids.  The hard thing is that the peripheral line is temporary and uses a small vein vs. the larger veins that the 'pick' line and hickman (his catheter) had access to - but he cannot go in for his surgery to have a new hickman inserted until his fungal infection has been treated.

On the positive front - Jonathan is walking again.  He has full use of his legs and even did a dance for me when I put on some party music in his room : ) last week.  He also started to swallow on his own on Monday night.  He started off by taking a couple sips of chocolate milk and also swallowing his own spit!  So no more getting the container for him to keep spitting into : ).  Last night he surprised me by asking for some of the (hospital) soup I was eating.  He drank most of the liquid - initially from a spoon and then via a straw - and he also ate a couple pieces of macaroni.

Yesterday also marked the first time in a long time that Jonathan and Arielle played like in the 'old' days.  I heard they had a lot of fun in his room and I know that Arielle enjoyed it immensely.  It was good to have her big brother back in form : ).

We are slowly coming up to day 60 - targeted around the 24th of October.  If Jonathan stays in the hospital until day 60 then it means when he is released that he gets to go home directly instead of going to the Ronald McDonald's House.  This is great news because we are ALL tired of being in an institution - I'm sure Gabby more than me - since I'm not the one spending all this time with Jonathan.  The interesting thing is that about two weeks ago I was having a discussion with one of the BMT Attendings and we were talking about - is it really necessary for us to spend time at the Ronald McDonald house if Jonathan gets released before the 60 days?

As a side bar note - the Ronald McDonald house is a housing facility that is next to the hospital - so although it has the McDonald name - it is not a fun / entertainment center - just a housing facility.  The general rule that was being followed is that BMT patients must live less than 20 minutes away (including rush hour traffic) or else they will have to stay in the Ronald McDonald house.  In our case we live about 30 minutes, with a little bit more if there is rush hour traffic - so we would have had to stay.

Although I agreed with the doctor that we needed to stay - I now fully understand why.  One of the frightening things is that when Jonathan gets an infection - because he is immuno-comprised - he doesn't show any symptoms.  This makes sense because his immune system isn't in a position to fight off anything - so his body doesn't reaction by showing you the external signs.  This is scary because one could never tell if he is truly sick or not and I know understand why during the first 60 days it is so crucial.

So - the beat marches one.  Jonathan has a CT scan schedule for this afternoon.  This scan is to get an idea as to how serious his fungal infection is, but the results can also be used to verify that he has no more tumor growth.  Of course he needs more than one test to indicate whether there is tumor growth - but one test out of four is better than none.

Day 32 - Happy Monday ...

Today is day 32 - counting from the first transplant - or day 5 - counting from his boost of stem cells or as I like to call it - the second transplant.  Jonathan's white blood count (WBC) is coming up to 0.5! Yeah! Finally some movement!  This is what we've been waiting for - and hopefully it shows a general trend that continues to go upward.  If his WBC is > 0.5 tomorrow - then I'll have my own little celebration!

Last night was the most active I've seen Jonathan!  A friend of mine came to visit on Saturday and he got this spider-man car and action figure for Jonathan.  As Gabby was telling me later on in the day - it was the only thing that have gotten him off the bed to take a couple of steps to play in a long time!  At last! We have something that motivates him to come off the bed!  I saw a bit of it last night - and although it is still very difficult for Jonathan to walk - if he continues to use his legs a bit everyday then I know we'll get over that challenge!  So Jonathan is definitely healing - a bit on the slow side - but positive progress none the less.

The other significant news is that Arielle is finally transitioning to being a daddy's girl!  It's so nice to finally hear my little girl talk about not wanting daddy to leave and other stuff that is normally associated to her mommy!  It has been nice spending all this time with her and I'm hoping the 'upward' trend continues.  This (coming) weekend marks the start of daddy and daughter activities.  On Saturday, Arielle starts a soccer program at the YMCA and on Sunday she starts Sunday school.  Both events I'm looking forward to more eagerly that Arielle - as I want her to start getting out 'into the world' - so to speak!  The soccer program should be really interesting as I cannot imagine a bunch of three year-olds playing soccer correctly - but as long as they are having lots of fun and getting plenty of exercise - I'm cool.

Lastly - Gabby and I went on a 'date' last night!  We went to a comedy show - John Winterspoon!  It was 'da bomb'!  I was losing faith in The Improv - with last night being the third time we've been to the Improv - but last night made up for the previous two visits.

So the beat goes on, today is another day, another week - I'm curious to see what's in store for us - maybe winning the lottery : ) ?

Day 28 - Starting over ...

It's interesting that nothing is ever constant with Jonathan's treatment.  As a parent or even as a patient - you have to go with the flow and adapt constantly.  It's a pity I cannot use this learning experience at my place of work : ) but our expectations regarding Jonathan's treatment are constantly changing.  On Tuesday (20th Sept) we had a consult with the medical team and they were surprised that Jonathan's white blood count (WBC) has not begun to increase.  For autologous stem cell transplant patients - patients that receive their own stem cell - the body would NOT reject its own stem cells and WBC production should start to occur and be detectable by day 12.  On Tuesday it was day 26 and his WBC has been hovering around 0.2.

Although Jonathan has not shown any WBC production in a drastic way - there was an increase as it went from zero to 0.4 and finally hovering around 0.2.  One belief (including my own) is that his stem cells did graft and his body is producing WBC but all the WBC are being diverted to the 'damaged' areas of his body and his bone marrow cannot produce enough WBC.  This 'theory' is augmented by the fact that healing has occurred within Jonathan's body - as evident by his mucusitis in his mouth and digestive system getting better and he does not have any more fevers.  In either scenario - his stem cells not in-grafting or his bone marrow not producing enough WBC - he still requires more stem cells.  So, on Wednesday (yesterday) he got a boost of stem cells.

Now it's a wait and see over the next seven days.  Hopefully his bone marrow kicks into full gear - but in the event that it doesn't - then he'll get another boost of stem cells.  The good thing is that he has all these extra batches of stem cells to use because in some cases patients are unable to produce enough stem cells for the collection earlier on in their treatment cycle.

So here goes the longer version of this explanation:

When Jonathan first signed up for the treatment of his cancer - he got signed up for a trial treatment.  For neuroblastoma - and I'm sure in a lot of other cancers - the treatment plan is not 'cast in stone' and the medical world is still trying to determine what is the correct sequencing of treatment plans and the correct dosage of drugs to use.  For Jonathan's disease - the trials generally gather information for a five year period in which the information gathered is reviewed and improvements made to the trial.

Part of Jonathan's trial involves the collection of (his own) stem cells (via his peripheral blood) after his second cycle of chemotherapy drugs.  When his stem cells are collected - the lab checks for any signs of (detectable) tumor and if no tumor cells are found - his stem cells are frozen and stored for use later in his treatment cycle.  The BMT (blood and marrow transplant) team normally tries to collect 'extra' stem cells in the event the patient requires more at a later date.  Some reasons for requiring more at a later date include the event that the cancer comes back.

For Jonathan's trial - there is another portion of the trial where patients are randomly chosen to go on the 'purging' arm of the stem cell collection.  For the purging arm - after testing the stem cells for 'detectable' tumor cells - the tumor cells goes through an extra 'purging' process.  In the purging process, anti-bodies are added (among other things) and they act as magnets to attract (undetectable) tumor cells.  The stem cells then goes through a purging process in which the stem cells are put through a centrifugal type machine to extract the 'magnets' with the undetectable tumor cells.  The advantage for the purging arm is obvious - although there is no evidence that confirms this - but the study is trying to determine whether the rate of re-occurrence of the cancer is reduced for patients on the purging arm.  The disadvantage of the purging arm is that a lot of stem cells are damaged in the process.

So - during the consult - we had to make a decision on whether to use the second batch of purged stem cells or whether to use from the backup supply that Stanford has - which did not go through the purging process.  Initially, I was thinking to go with the backup supply but changed my mind to go with the second batch of purged stem cells.  Hopefully this boost does the trick and Jonathan starts to recover.

Day 20 - Upbeat ...

It's been a week since my mom left to return back to Trinidad and amazingly I'm settling down quite nicely.  On Sunday I made my first meal in years!  I cooked enough food for Sunday and two other days - both for Gabby and myself.  The menu was macaroni and cheese, stew beef and bar-bar-que fish!  Tasted rather nice and amazingly enough I managed to cook another meal last night for today (Wednesday) and tomorrow.  This time it's potato salad with some Chinese style beef (with peppers and onions) - yum, yum - cannot wait to eat it when I reach into the office.  I'm actually enjoying keeping house and just like both our moms - I'm making sure to clean up as soon as I make a mess - so that way it does not build up and become a huge chore, e.g. the dishes in the kitchen.

It's also great to spend more time with Arielle - and although she is still a mommy's girl - I think daddy is slowly coming (back) into her life.  The thing that amazes me is that she is so into the computer now - so whenever I'm doing work - she is one the home computer - next to me - playing games on Disney or Noggin.  What I need to do now is get some pre-K CDs so her learning can continue - but it's great to see her do her matching, colors, and learn about letters.  I'm really proud that both my kids are into computer technology so much and it's amazing at three years old that Arielle is a master at the mouse.  Jonathan is a master at the three types of mice we have - the regular mouse, the trackball and the touch sensitive pad on my laptop!

I'm actually looking forward to Arielle starting Sunday school - on the 2nd of October - and one of the prerequisites was for her to be potty trained!  I think with Arielle and I getting in a pattern / routine - it's making it easier for her and although she can pee pee in the potty very well - we still have a long way to go for her pooping.  The good thing is that the nun in charge gave us an extra month to get her potty train - so hopefully by beginning of November things would be cool.

The last couple of days have been quite interesting.  On Friday, Gabby and I had a big blow-up, as Jonathan care puts a severe strain on our relationship, but fortunately we were able to meet with our therapist on Friday afternoon so it allowed us, especially me : ) to calm down a couple of notches.  We still have a long way to go and I'm curious to see how we manage it.  I've also met with my therapist on Saturday and with my primary doctor on Monday and they both - generally - agree that I don't have to go back on my anti-depressants.  What's interesting, and something that I should have figured out, was my frustration with the resident doctors could have been dealt with differently by just suggesting or asking the residents that if they don't know about an issue, that it's okay.  I've learnt that I was expecting too much from the system and unfairly placing high demands on it, coupled with a discussion I had with an attending doctor, has brought me down a lot of notches with my anger with dealing with the medical staff.

Now, I can safely say that I would not be getting as angry as I used to, but as my primary doctor says, I should not aim at getting rid of my anger but on channeling it to utilizing it better.  I fully agrees and I know as we come closer to Jonathan's radiation therapy, I'll definitely have to do more channeling : ) because we are starting to hit some issues I don't see eye to eye with the radiation medical team!

As for Jonathan, he is still plodding along.  The new thing is that Gabby thinks Jonathan is depressed and this is concerning to me.  I've always placed Jonathan's well being and psyche more important that his physical self because if a person loses the will to fight then nothing else matters.  So this has us thinking about how to fix this issue and it's interesting how we are formulating a strategy.  I have had this issue in the past - after Jonathan's surgery was a good example - and I got his next chemotherapy cycle delayed because of it.

So, after a rough couple of days, things are looking a bit more positive and I'm hoping it stays that way.

Day 14 - Division of labor ...

It's been two days now and Gabby and I are on our own.  My mom returned to Trinidad having spent over two months with us and we have about two weeks to wait before Gabby's mom comes up to help us out.  I was a bit concern about how we will manage on our own for the next two weeks but I must admit it has been going better than expected.  Taking a step back - I've taken some time to ponder on how Gabby and I can help each other out with managing Jonathan's care.  I think - although I'll like to get as involved as possible - I need to take a step back and reduce my involvement in some activities.  The thought that comes to my mind is the phrase, delegate, delegate, delegate - although in this case I'm not delegating : ).

So ... with Gabby only working on 1/2 day on Saturday ... I figure her new (temporary) full time job could be taking care of Jonathan.  With that being said ... it allows me worry less about being actively involved in his day to day care and concentrate more on my job and other things relating to Jonathan care, such as billing issues, etc...  For this reason ... our two week period on our own is not as frightening.  Gabby spends Monday to Friday with Jonathan and I stay from Friday night into Sunday afternoon - or depending on other factors - into Saturday afternoon instead.

We had one option of me spending the nights in the hospital and Gabby and Arielle can sleep over by her friend in Palo Alto - but I think we will be using that option about half of the time.  Although it's more convenient from a commute perspective - being at home allows me to do more work from home and to sleep better compared to sleeping at the hospital.  It also means that Arielle will get more daddy time especially since we have to do the commute up to Stanford in the mornings and afternoons.  Although we have not had a chance to commute via the train - I'm hoping that next week we'll get an opportunity because the kids love going on the train.  At least there is one good benefit out of all of this madness : ).

Day 13 - Plodding along ...

Jonathan continues to plod along.  Some of the symptoms of problems that the medical team were expecting to show up earlier are now starting to show up now.  Some of these symptoms include:

1. Increased weight and bloating - caused by his capillaries leaking fluid into his body.
2. More regular transfusion - I estimate that Jonathan is getting platelets every day now and blood (hemoglobin) almost every day.  Last week they had raise the limits or criteria for initiating a transfusion - so for platelets his WBC limit was increased from 15k to 30k and his hemoglobin was increased to 10.  So anytime his white blood cells (WBC) drops below 30k, Jonathan gets a transfusion.

The news this morning is that there are more things happening (cannot spell the words so being vague for now) so Jonathan has an ultra-sound this morning to check on the working of his liver and kidney.  Since the weekend there has been trace amounts of blood in his urine - with the detectable amount of blood being between 11 to 12 prior to a (platelet) transfusion and dropping to 3 to 4 about 18 hours after a transfusion.  The theory right now is that the trace amounts of blood is due to his WBC being so low.

Now, whenever I talk to the residents, I always start off with, "so ... what is the theory ..." because when we get a new resident, it's always a theory.  I found out (today) from Gabby that the medical team were not flushing his peripheral line as regularly as they should, i.e. they are suppose to flush it every 8 hours, but now they are on the ball.  It's these kinds of things that just irate the crap out of me.  Am I a nurse?  Am I a doctor?  WTF is wrong with these people - you are in the health-care industry - you are fully aware of what is involved - you know your field - why do we, as parents, need to keep on top of things?

I am just waiting for the day the tables are turned and I get a chance to serve a doctor who is having a computer related issue.  I'll definitely give them a piece of their own medicine!

All in all, my ranting does not imply the care at Stanford is shoddy.  I know (deep down) that the care that Jonathan is getting is one of the best and I think of Stanford as the lesser of the two evils, meaning, I'm sure I'll have more issues to deal with if I was at another hospital.  My question is, should I not demand for perfection?  I know the customers at my company usually do, and my work isn't life threatening!

So Jonathan continues to mosey along: not very mobile, on a very serious supply of pain medications, still vomiting, still in pain, and definitely NOT enjoying himself!  I'm just glad I don't have to deal with it : ) - which is unfair to Gabby but I definitely don't have the resources to deal with worrying about work and worrying about the hospital.  I think Jonathan's active care is a full time job and Gabby is doing that well enough.

Day 12 Too much drama - too much everything ...

I've just come to realize that if my quality of work was just as good as the doctors in the health care industry - it would be such shoddy work!  It's amazing the amount of crap patients and parents of patients have to put up.  You would think with all huge amounts of money that patients have to pay - you would get much better service!  In the technology field - this level of stupidity would NOT be allowed to last!

So I've completely had it with dealing with the billing department at Stanford so I've setup a meeting with a representative at the billing department for Thursday at 9 am.  The amount of time I have to waste talking to these clowns - I wish they would give me my equivalent salary for each hour I have to spend on the phone with them!  You would think by now that they would know what the hell they have to do but noooo - it will take a parent with NO experience of the medical field and medical billing to have to chase every god damn thing and tell them how to do their jobs - s0me color language would go most appropriate here - but I'll be nice - cause I nearly cuss up the clown I had to talk to today as well!

So ... plenty drama on Friday ... thank God I didn't have to deal with it ... because I'll definitely be kicked out of the hospital.  After the third attempt of patch Jonathan's catheter - there was another leak so on Friday afternoon they decided to do some 'emergency' surgery to remove the catheter (or line that goes into his chest) and put another line in his arm.  With Jonathan's having no white blood cells - WBC - and bone marrow - they didn't want to do place another central line in his chest as now would not be the best time.  So the alternative was to put the line just above his elbow and snake it through a (major) blood vessel so the line will go close to his heart.  So Jonathan has a central line now - but more of a temporary one.  When his WBC and ANC comes back up - we'll look at putting in back his catheter in his chest.

The events on Friday were very stressful ... especially for Gabby.  I could hear the panic in her voice as the events slowly unfolded itself and I was glad I was at work.  Being at work allowed me to focus more on work and not 'lose' my cool by being in the hospital.  Sometimes ... as soon as I enter the hospital I get immensely mad and angry.  I'm tired of having to deal with different nurses - all with their own quirks and behaviors.  I'm tired of dealing with different resident (doctors) - where their level of experience always differs.  Some of them don't know crap and others - well ... what can I say ...  It's the dealing with different nurses that gets to me.  Each time I have to adjust to their style of doing things and some are more gentle with Jonathan than others ... and let me tell you ... the ones that are not as gentle - tick me off.

So the plan this week?  Continue to stay off my anti-depressants but I'm going to see my therapist on Saturday afternoon.  This is one time I can see a - potentially - huge value in a face to face session.  One of the things I want to discuss is whether I should go back on my anti-depressants or at least figure out another alternative to having to take medication - because I don't have any more patience for the medical staff and team.

Day 8 after stem cell transplant

Yikes - I just read over yesterday's journal entry and it is really disjointed.  I think I better than reading over my entries to correct my English : ).  Today is day #5 that I've been off my anti-depressants and I'm still alive and kicking.  Couldn't sleep last night and absolutely refused to take my sleeping pills.  Around 12:20 am I decided to get off the bed and do some work.  I figure if I cannot fall asleep I might as well use that time to do something productive.  I did about two hours work and figured I should be sleepy but I needed another 30 minutes before actually falling asleep.  I would say I fell asleep around 3 am and I was feeling so crummy in the morning I wish today was the weekend!

The good thing out of all this is that I got some good work done and I wish I had stayed up longer.  I did consider doing an all-nighter but I figure I would be totally 'mashed up' that I should try and preserve whatever amount of my day that I can preserve.

Earlier in the night I was putting Arielle to bed (she sleeps in the bedroom with me so she'll have company) and she insisted that I have to stay in the room with her.  As usual - whenever she has to go to bed - she remembers she has a million things to do, for example, watch a movie, want a drink, anything to avoid going to sleep.  Of course my response was no to all of her requests so she wasn't pleased and decided to lie down all the way on the other edge of the bed, but as soon as she fell asleep she suddenly finds herself snuggling against me : ).  So this morning she wakes up and says that I was sleeping on her pillow ... so I tell her, "yeah because she was sleeping on my side : )".  It's amazing how little kids could toss and turn so much - I think part of their 'mission' while sleeping is to make sure they have used every bit of the bed - including the side that you are sleeping on : ).  I'm not complaining - just thought it hilarious how my sweet little girl could be 'vex' with me one minute and in the next it's, "I want my daddy : )".

I've realized that one thing that is helping me is to force a pattern on myself.  Yesterday was a good day at the office - because I kept to a pattern.  I'm going to try that more often now and hopefully that helps keep me on track.

On Jonathan's side of the world - nothing new to report.  He is still in pain and still has fevers.  Yesterday his white blood count (WBC) went from less than 0.1 on Wednesday to 0.2 on Thursday - but Gabby's celebration was short lived because today it is back to less than 0.1.  I guess Gabby's thoughts are that the healing process has slowly begun since he isn't spitting up the really thick kind of mucus and he isn't pushing the button to get that extra dose of pain medicines.  My own belief - which differs greatly from Gabby - is that Jonathan's threshold of pain has probably increased and until I see physical evidence of his stem cells taking root - I'm not going to think that his healing has begun.  I still think it is an unfair amount of pain and suffering that Jonathan has to go through but I try to NOT think about it too much because I'll just go crazy.

Amazing thing last night was that I couldn't do anything to settle my mind to sleep and when I started to sing the Our Father in my mind for some reason it had a calming effect.  It was a particular version of the Our Father that is sung in Trinidad - that I have not heard in the States - and I have no idea why it popped into my mind.  So my other thought was to say some prayers - but that didn't work - so I just continued humming the song in my head.

I'm going to be spending tonight into Sunday morning with Jonathan.  I'm curious to see how that goes especially since I'm not on my anti-depressants.  Hopefully I have the nurses that I can really work with and so my day ends up being a smooth one.  I'm also hoping I spend most of Saturday sleeping because I figure I have a lot of catching up to do.  I also figure that this journal is just as disjointed but don't feel like checking it so excuse the bad English : ).

Day 7 after stem cell transplant

Gabby is still at the hospital - having been there since Monday night.  She's had plenty of drama over the last 36 hours!  On Tuesday - Jonathan's hickman (his catheter that goes into his chest for him to get his medication) broke!  Originally they thought the blood they were seeing on the bed was from his mouth - but Gabby saw some white stuff (his fat emulsion) on his chest area and on further checking they realize that he had a hole in his catheter.  Gabby started to think the worse - because at first sign - we didn't know that these things could be repaired.  We thought that Jonathan had to go in for surgery to get the old catheter removed and a new placed.

So after using the repair kit - they realized that it was not placed correctly - that it was still leaking.  When the second attempt was made - they realize that they didn't have any more repair kits for the size of Jonathan's catheter and the nearest one was available in the south bay - so we had to wait until the afternoon before they tried the second repair.  It's after 8 am and Gabby tells me that after the second repair they realize that there was a block in the line that was not dissolving when they use TPA (kind of like DrainO for the taps) so they decided to do a third repair last night and everything seems to be going okay now.  No more leaks, no more clogs.  The only thing is that each time a repair was done, his line was cut closer and closer to the incision point where the line goes into his body to be connected to his blood vessel.  So the hope is that we have no more 'accidents' with his line until he is done - because we are not too excited about the prospect of another surgery right now.

Switching topics now - this if the fourth day I've been off of my anti-depressants.  I voluntary came of those medications and I'm only take antacids and sleeping pills right now.  I'm not sure how wise this decision is, but even after I had my dose doubled - I still felt it was not helping - I still had to take sleeping pills - so I decided that I didn't want my dose increased again and decided to come off of it.  If I tell me boss off or do something stupid at the hospital - then I'll know this was an unwise decision.  I already felt my anger levels rising yesterday when I visited Jonathan in the hospital and so I decided not to stay too long.  I'm slowly getting zero tolerance for the lack of improvement in some areas - but it's fortunate that these areas are very minimal and insignificant.  I must say - this has been the first rounds of procedures where I don't have to be double checking anything and I'm completely relaxed that all his medicines are being administered by the correct time, etc...

So ... other than me coming off my medication on Monday - I also played hooky from the office yesterday.  Arielle (and Jonathan) got invited to a birthday party on Wednesday from 10:30 am to 12:45 pm and originally Gabrielle was suppose to take Arielle but with my feeling like I'm coming down with the 'cold' - I decided to take it.  It was such a nice event - sometimes I forget that there is more to life than the 8 to 5 grind (or as my office does it - 9 to 7 for six or seven days a week).  The original plan was to stay at the party until 11:30 am and then take Arielle home and head up to the office - but I guess with my being off my medications and other factors I was in such a funky mood that by the time I left the party it was 1 pm.  We then decided to head up to the hospital to see Jonathan and then head home.

I've come to realize that once my daily pattern gets broken - then it's real difficult to go to work.  So 'relatively' bright and early this morning - I'm on the 8:04 am 'baby bullet' train heading to San Francisco to put in my 8 hours of work.  It's unfortunate though, because Jonathan was asking to see Daddy this morning and is quite upset that I'm not spending any great amount of time - but if I only go there this morning - I don't know what time I'll be reaching into the office.  I'm slowly starting to consider other options or ways to make my work life more flexible and hopefully a solution presents itself real soon.

Day 5 after stem cell transplant

Jonathan's autologous stem cell transplant was last week Thursday.  Originally I was not planning to be there but I got a call from Gabby around 10 am in which she was asking me if I was coming.  Apparently they had setup a lot of equipment in the event that Jonathan had a seizure or things didn't go well during the transplant.  I guess with all the 'extra' activity, Gabby got a little nervous and our previous expectation about the transplant being an easy process got thrown out the window.

Since I was still home - I decided to take the day off from work so I can be there during the transplant.  The actually transplant is really a similar procedure to when a patient is receiving blood and our initial expectation was that it would take just as long, about 3 hours.  The transplant itself started at 11 am but I didn't reach the hospital until 11:30 am.  By the time I arrived the most of the stem cells were already inside of Jonathan so I reached for the ending portion of the procedure with everything finishing about 5 minutes after I arrived.

The transplant procedure went well - and Jonathan didn't have any adverse effects.  What was interesting was that it was only the day before (Wednesday) that his counts finally got low enough for him to be classified as neutropenic, i.e. no white blood cells so no immune system to fight off any diseases.  So in Jonathan's case he was lucky that he was able to go out of his room for the first five to six days of his stay.  The doctors were expecting him to be neutropenic after the third day (for the least).  Of course I'm not complaining since it allowed Jonathan to have some more play time and fun but looking at him now - it's a big contrast.

I cannot remember clearly - but I believe by Thursday the sores in his mouth, throat and stomach got so bad that we already had Jonathan hooked up to receive pain medication all the time.  By Friday his fevers started and Jonathan has been spending his days having fevers and battling the pain in his digestive system.

On Friday morning I got a call from Gabby that she woke up with a sore throat and this was bummer news.  It meant that she couldn't stay with Jonathan and thus I had to extend my PTO until she recovered.  By Sunday, Gabby was beginning to feel better and by Monday we decided that she could spend Monday night with Jonathan and I could return to work.  This was a good thing too, because, besides the amount of PTO I was taking (which is always negative in my case), I was not getting much sleep in the hospital.  Every hour or so, Jonathan would be whimpering in pain and I would be needed to help him relieve the pain - either pushing the 'button' to get more pain medicines, helping him spit, rubbing vicks on his neck, etc...

By Monday I was completely exhausted.  Fortunately I was not cranky - just exhausted.  I was also fearing that I was getting sick but after a good nights rest - I woke up this morning feeling fine.  Of course I could have done with a bit more sleep - at least another two hours - but got to get to work today.

So ... the doctors estimate that Jonathan has another week of going through this terrible period and hopefully by the end of next week his stem cells will have taken root and his body will start back producing white and red blood cells and platelets.  Right now Jonathan is receiving a transfusion once a day.  One day he'll get platelets and the other day he'll get blood.  Since his body cannot produce any of it, i.e. because there is no bone marrow - he needs to get a supply while we wait for his stem cells to take root.

BMT Procedure - Day -1 or Day 6

After my journal entry on Saturday morning - Jonathan started to feel the effects of the chemo drugs.  On Saturday afternoon he had his first episode of vomiting and unfortunately it also included throwing up his NG tube.  So now we didn't have an easy way to give him his oral medications : (.  I think the NG tube was the biggest loss because Jonathan gets at least four medicines twice a day.  One for his blood pressure, another to (try and) protect his liver from damage from the chemo drugs, the third is an antibiotic and the fourth being a preventative medicine to reduce the amount of sores in his mouth and throat (another side effective of chemo).

On Monday - the BMT nurse practitioner and a couple other medical staff members saw (for the first time) how difficult it is to give Jonathan oral medicines.  For us - this was a normal thing because from the beginning Jonathan never wanted to take oral medicines.  He'll take everything else you throw at him but oral medicines was where he crossed the line.  Child life and child psychology were then brought in to work with him but I'm not sure how effective that has or will be.  On Tuesday they tried a couple of times to give / force the oral medicines but each time he threw up - probably because he worked himself up into a frenzy and it brought the nausea feeling back on.

On Tuesday afternoon they decided to put another NG tube - so right now he has a tube in and I'm hoping this one doesn't come out so at least we'll have easy access over the next two months or so.  Originally they said that if his first NG tube came out they wouldn't put another one back in - because with his mucusitis starting, i.e. the sores in his mouth and throat, putting the tube in may cause some slight injury to his throat and with him becoming nutroplenic they don't want to cause any unnecessary injury or sores.  But the decision was reversed because they saw how difficult Jonathan can be with taking oral medicine.

So far - Gabby has been the one bearing most of the burden of staying with Jonathan.  I've only stayed two nights - Friday and Tuesday.  Leading up to Jonathan's entry for BMT and his stay up till now - I've been in quite a 'funk'.  It was really difficult to get to work on Monday and Tuesday - although my working from home on Monday wasn't too bad.  I think my biggest deterrent right now is putting in the extra effort I have to do for my commute.  When I get to 'work from home' or I've reached into the office and started working - it's actually quite enjoyable.  It's definitely a topic I'll bring up with my boss but 'working from home' is a practice that is not encouraged so I'm not sure what decision will be made.

Another interesting thing that happened this weekend is that I got to spend time with Arielle.  On Sunday we drove to Fresno to see my brother (his wife) and their new baby daughter.  This was one of the few drives that Arielle stayed awake for more than 2/3 of the trip and it was interesting to hear all the 'talks' from her.  We got some good laughs out of it and it is amazing how much she hears and understand about what is going on around her.  With Arielle turning 3 a couple of days ago (on the 19th) I've come to a new appreciation of how much she is truly becoming a 'big girl' and is growing up.  I think, maybe part of my funk, is my shifting of responsibilities to start concentrating on Arielle a bit more, especially since I want her to start back at some sort of day care / preschool while she waits for the 2006 / 2007 school year to begin and join pre-K at Saint Lawrence.

So - tomorrow is going to be the big day.  Jonathan is going to get his stem cells back and hopefully all continues as planned with the stem cells taking root and starting to produce red and white blood cells and platelets.

BMT Procedure - Day 3 or Day -5

It's 5:30 am in the morning and this is my first night in the hospital since Jonathan started his preparation for his stem cell transplant.  I know I have trouble sleeping but I didn't think I was such a light sleeper until tonight.  Let me explain - as part of Jonathan regimen - he gets hydrated a lot so that the chemotherapy drugs gets flushed out of his system - at the same time they are giving him chemotherapy drugs.  Sounds confusing - huh?  Well, the consequence of getting so much hydration is that he has to urinate quite regularly - in this case between 100 to 150 cc every 30 to 60 minutes.  The only problem is that in the night - Jonathan does not get up to urinate so he wears diapers to try and prevent the bed from getting too wet.

Unlike the previous chemotherapy treatments when we could have changed his diaper every two hours - we have to check every hour and I've been getting up every hour to help the nurse.  The good thing is that the nurse really needed help because twice when Jonathan's diaper came off he tried to 'bless' the nurse : ) keeping in mind he is still asleep or at least half asleep.

So I've gotten up so many times - I've decided I ain't bothering to try and go back to sleep.  I tried doing some work but with a dial-up connection it's mightily difficult to get work done, i.e. it takes way to long.  Boy do I miss my broadband / DSL connection at home : (.  It's a pity the hospital doesn't offer some kind of network connectivity in the rooms - then I could really live here : ).

So today starts the third day of chemo or day -5 before day 0.  Day 0 being the day he gets his stem cell.  Luckily Jonathan has not begun feeling nauseous so we don't have to worry about his NG tube coming out.  So less fighting for us for having him to take his oral medications because it can still go through the tube.  Jonathan is also quite active but somewhat on the miserable side.  Being a little stubborn and not listening - so it will be interesting to see how things develop over the next couple of days.  This time we are being more firm with him - because if we don't he'll only get worse - and he's still a kid so I don't want him to think he can do whatever he wants and not listen when adults talk to him.  All in all the start has been good - I'm hoping the rest goes well : ).

On a side note - a special request to those of you that are following Jonathan's progress.  As he is in for a long haul / stay in a hospital environment it will be great if he can get mail.  Nice cards or letters.  For those of you that can, you can send mail to our home address:

Jonathan Seepersad
1035 Coleman Road, #7-117
San Jose, CA 95123

That's it for now - wish I had remembered to bring a movie so I could have watched it but I'll have to occupy myself with something else to do.

BMT Procedure - Day 2

Today is the second day of the start of Jonathan's BMT (Blood Marrow Transplant) procedure.  The first seven days are the countdown to the actual stem cell transplant and then (hopefully) two weeks after that the stem cells would have taken root and white blood cell production would have begun.  So far, Jonathan is handling the chemotherapy drugs very well.  The drugs he is getting are in much higher quantities to what he has gotten in the past and the plan is for the chemo drugs to wipe out most of his bone marrow so Jonathan can start with a fresh bone marrow / immune system.

Jonathan had not experienced any nausea as yet and has been playing, eating and moving around just fine.  Although it is usual for kids on this type of treatment to have nausea - we are hoping he had a minimum amount of it because if he has to vomit to much his NG tube may come up and out.  At least for now, with his NG tube in, we don't have to battle him to take his oral medications and right now everything is put down his NG tube.

This morning was the first time I saw Jonathan and Gabby since he was admitted on Wednesday afternoon.  Gabby has been spending the last couple of days with him and I suspect she will be doing the next 8 days as well - at least until next weekend.  I think with all the 'noise' and fussing I made in preparation for the BMT procedure - Gabby has had a smooth and trouble-free experience at the hospital.  I'm glad and it takes the pressure off of us and also means I don't necessarily have to be there.  But I think I've gone totally on the other side, where I don't mind NOT being there at all.  The last two nights at home were nice - and since Arielle sleeps with me - one of us always have one of the kids with us.  I think part of my comfortableness with not having to go to the hospital is that I'm very tired and I can rest better at home - whereas Gabby is actually resting better at the hospital.  I'll be curious to see how the next couple of days go - because although I'm home - I've noticed I still have to take my sleeping pills to get me to go to sleep quickly.  The only time I don't need my sleeping pills is when I'm in the train : ).

Autologous stem cell transplant starts today

One of the things I've learnt over the weekend is to cherish every moment I have with the kids - even those moments when I want some time to myself : ).  This weekend was a good weekend - Gabby and I went on a 'date' on Saturday night and on Sunday we went to Big Basin Redwoods State Park.  The 'date' was to celebrate our 6 year anniversary of being married.  First we went to a comedy show - which was also being recorded because the comedian is making a DVD and then we went to the movies.  So we didn't reach home until 3:30 am - kind of reminded me of the 'ole' days when I used to go 'clubbing' and would stay out until 4 / 5 am in the morning.

So ... with only 4 hours sleep 'under my belt' we started to get ready for our trip to see the Redwoods.  The plan that day was to go to the state park and then head over to Carmel to do the 17 mile drive but we ended up spending the entire day at the park and by the time we were ready to leave it was almost 5 pm.  The kids enjoyed themselves immensely.  Partly because their cousins were there and partly because the trails to walk and explore were a lot of fun for them.  Jonathan enjoyed himself so much we had moments of him not listening and getting a frown or two - either because he was exerting himself too much, kicking up too much dust (which he shouldn't be breathing in) or doing something he shouldn't be doing.  All in all it was a fantastic day and a great way to end the weekend.

Jonathan's entry for his stem cell transplant got pushed again from Monday (15th) to Wednesday (17th).  The main reason is that Jonathan developed a serious cough Sunday night - probably with all that dust he was breathing in - and he coughed constantly throughout the night.  He did go into the hospital on Monday for his pre-admitting exams - because this time I wanted the doctor's to see for themselves instead of explaining over the phone what was going on and having them make a decision.  During his physical exam they saw that his throat was red (probably with all the coughing, etc...) so they swabbed his nose to make sure he didn't have one of the more serious viruses and did a chest x-ray to make sure his lungs were clear.

So today is the day.  The start of two months of the family getting broken up, i.e. one parent at Jonathan's bedside and the other parent at home (or in my case at work too).  It's also the start of renewing Jonathan's immune system and hopefully kicking this disease out of his system.  I cannot believe its been seven months since we've started treating Jonathan for cancer!  I know Gabby and I are maxed out.  If Jonathan's treatment takes another seven months as intense as the previous seven - I don't know if we will have the strength to continue.

BMT Procedure got pushed to next week

Wednesday morning and I'm on the train going to work.  Again I'm wishing I was staying at home - or at least working closer to home.  Fortunately yesterday wasn't a bad day - and like any days at the office - you have your good days and not so good days.  Over the weekend - Sunday to be exact - we had the birthday party for Gabby and Arielle.  It was very nice.  This is the first time we invited so many people to our place and we were pleasantly surprised that things were still comfortable.  If we didn't have our huge porch / patio then we would have been in some trouble - but I've noticed it sure does help to have a large patio.

The kids enjoyed themselves immensely and all in all it was a lot of fun.  I had over-estimated the amount of meet we would need and ended up grilling until the gas ran out and after changing the tank and finishing up the last batch decided that I'm not grilling anymore.  So one bowl of chicken got left behind (which went into storage for another day).

On Monday Gabby and I woke up with the cold.  I had (primarily) a low grade fever, while Gabby has a sore throat.  We both felt yucky.  Because we woke up not feeling well I called the BMT coordinator to let him know about our changed condition and whether Jonathan's appointment could be shifted to Wednesday instead?  After a couple phone calls it was decided that the best bet was for Gabby and I to get checked out by our PCP (primary care physician) to make sure nothing worse was going on based on that information they'll decided whether to start on Wednesday or push to the following week - on Monday.

By Tuesday morning Arielle's nose started to 'run' and we didn't know if Jonathan got the cold and the symptoms are not presenting themselves as yet - so the medical team decided to push everything off to next week Monday.  In a way this is good because it means we get one more weekend together as a family.  It also means that Gabby and I can use one day this weekend to celebrate our 6th year anniversary.  With our wedding anniversary being the 15th I'm thinking we can go out somewhere on Saturday night and make it special ;).  I know Gabby is looking forward to us doing something - since we don't often do anything - so hopefully I'll be able to surprise her this year : ).

With the delay for Jonathan starting - it also means that some of his tests have to be redone, including an audio cardiogram and various blood tests.  Once that gets done today - then it's a matter of resting (at home) and letting the healing begin.  Hopefully all goes well this week for a successful start of Jonathan's BMT procedure next week.