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.