Memorial Day Weekend

It's so many days after day 0 that I've stopped counting (smile).  After the scare with Jonathan's blood counts dropping dangerously low the previous week - we've been taking it a bit slowly now.  I think that since Jonathan has the cold, coupled with my pushing back on procedures from the hospital, that things have slowed down a bit.  Although I'm glad things have slowed down, for example, his bone marrow aspirate (taking a sample of his bone and bone marrow), and Jonathan is being to feel better (emotionally and physically), I've reached the stage where I want to speed it back up.  Since Jonathan's blood counts have recovered and he is starting to relax a bit - I've noticed that he is indeed slower now.  He doesn't have as much energy as he used to have and even when you do see a hint of the old Jonathan - he cannot sustain the level he used to have before.  This is depressing to see and realize!

On Friday (5/27) Gabby took Jonathan into his school (Pre-K) to have a short celebration with his friends for his birthday.  I know, I know, his birthday was almost two weeks ago - but since his actual birth day was horrible - because he spent the day throwing up, we decided to have a make-up day for him (smile).  Although I wish I could have been there to see him - I heard that he enjoyed himself and his friends were happy to see him.  There were two events that happened that Gabby told me.  Mrs. M (Jonathan's pre-K teacher) was telling the class that Jonathan was going to be coming later that day and that he was bring a surprise.  The class responded by asking, "Are you sure he's coming?".  So then Mrs. M has to modify her statement and say that "if he is feeling well he will be coming".  It was so 'cute' to hear this because I can almost visualize it in my mind.  The second event was when Jonathan went to play on the slide with his friends.  Apparently his friends wanted to slide (together) with him but eventually I think the entire experience got overwhelming for him.  In the beginning he was 'begging' Gabrielle to stay longer but after the slide experience he came back to Gabby and said, "I'm ready to go home now".  I remember Gabby telling me that Jonathan has indeed slowed down now.

Looking beyond - Jonathan has a bone marrow aspirate scheduled for Tuesday morning.  The results from that, coupled with his CT scan performed last week would gave us an indication as to how much the tumor has shrunk since his last evaluation.  This time, the evaluation is to prepare Jonathan for surgery.  By next week they want to have Jonathan's surgery to remove the remaining amount of the primary tumor.  Although this only needed to do the CT scan, our doctor wanted the bone marrow aspirate done because they were a bit disappointed in the last results which showed that he had cancer cells in his bone marrow.  We are hoping that the results - this time - shows that he is free of cancer cells in his bone marrow - because if not - I don't know what will happen.

I know Gabby is very worried about the surgery and stem cell transplant and I guess using the word worry is wrong.  She is probably a bit scared.  I've been lucky that things are so busy in the office that during the day I don't have time to worry - but every so often - when I look at Jonathan - especially when he is sleeping - I worry to and I'm scared.  Of late - I've been asking - why does someone as little and young as my son have to go through so much suffering?  It's so unfair that a little child has to go though all this suffering!

Fifth induction phase - Day 17

This has been an interesting induction phase for us.  It's been a little tougher because we've seen Jonathan's counts taking much longer to recover - an indicator that his bone marrow has been slammed a lot by the chemotherapy treatment.  His body is weaker and is thus taking longer to recover.  On Thursday, Jonathan's blood results showed that his white blood count (WBC) was around 2 and his hemoglobin was at 8.3 (a drop from 9.x earlier in the week).  I remember having a couple conversations with the nurses that we should consider a blood transfusion because my fear was to have Jonathan go through the weekend and his counts drop dangerously low.  The nurse practitioner was saying that his hemoglobin was not low enough to have a transfusion (it needed to be less than 8) and plus the day hospital was so booked up that some patients may have been handled by the oncology department.  So on Thursday we agreed to have another blood test on Friday so we can gauge how fast or slow his various counts might be dropping.

On Friday, Gabby dropped another blood sample in and I remember getting a call in the early afternoon that his hemoglobin has dropped to 4.x.  This was a rapid drop and dangerously so.  They wanted Jonathan to come back in immediately!  They wanted to take another blood sample (to re-verify the results) and start a transfusion in the afternoon.  We were very concern and I remember Gabby asking them if the rapid drop may have been due to a secondary cancer developing, such as leukemia.  Of course that kind of threw me into a spin - but since I was at work I was busy so I (deliberately) stopped focusing on this (potentially) new development.  The other thing that started to happen on Friday was that Jonathan developed a cough.  During his blood transfusion his cough got worse - sounded very horse - which actually got Jonathan very concern and afraid.  Gabby tells me that Jonathan started to panic and it took a while to calm him back down.

On Saturday Jonathan started to have these very low grade fevers and just after 10 am he started to complain about his head hurting.  We were not sure if it was the virus causing it or an allergic reaction to the blood transfusion.  We decided to call the pediatric oncologist on call who wanted another blood sample so we could make sure that his counts were okay and that this was just the virus going through its phases.  By Saturday afternoon we found out that his counts were okay and it's probably the virus - which might also explain why his counts dropped so drastically on Friday as well.

What was interesting was that all though-out my conversation with the nurse and nurse practitioner, I remember telling them that my 'flags' or warning bells were going off.  I didn't have any specific (hard) reason but I just knew I was very worried for Jonathan and I was trying to push back on the bone marrow aspirate on Monday.  When I got the news on Friday - I remember telling myself - it's a good thing I pushed to have his blood re-checked on Friday before the weekend - because I don't know what would have happened over the weekend if he didn't get that emergency transfusion on Friday.

This has added more fervor to my mind that I'm ALWAYS going to act on my instincts now.  Regardless on how crazy I may sound or that we may not have all the medical indicators - if I feel uncomfortable or my warning bells are going off I am going to push as hard as I can.  Part of the reason is that Jonathan has been going so good that (I suspect) sometimes they let things go and as such they are really depending on us (the parents) to let them know if there are any changes in Jonathan.

The other significant thing that happened was about 1 1/2 weeks ago when I was traveling to work.  Of late, I've been falling to sleep every morning on the train and on some occasions I don't get up until everyone have cleared out of the train.  Fortunately for me, my stop is the last stop so I don't have to worry about missing my stop.  But I cannot say that for the bus (which I take to the train station).  On Friday morning (13th) I fell asleep on the bus and didn't wake up until the end of the line.  To give you an idea on what that means - I took the 6:52 am bus, my stop was around 7:25 am, and I woke up at 7:50 am!  Needless to say, I had to work my way back up the line to get to Caltrain to get a train to San Francisco.  After that occasion I've decided - no more sleeping on the bus!  I still sleep on the train - but I don't want to take a chance on the bus!

I do know that Gabby and I are getting very tired / exhausted with the treatment.  I know we still have at least four more months of active therapy before it's done AND that is assuming that he responds well.  If he doesn't respond well ... well I don't even want to think about it.  As they say ... one day at a time ...

Fifth induction phase - Day 10

Interesting weekend!  Since Monday night we have been giving Jonathan his G-CSF shots.  We normally give him these shots every night for at least 10 days - until his white blood count comes up and we can stop giving him the shots.  It's a very traumatic experience and normally requires one of us to hold him down, including locking his arms (so he would not scratch and pinch us) and locking his feet (so he wouldn't kick).  Whoever isn't holding down Jonathan will be holding his leg steady and giving him the injection.

On Friday night I learnt that Jonathan goes through these phases of saying he doesn't love Daddy because Daddy gives him the shots.  To compound it, even if Gabby gives him the shots (and I'm holding him down), it's still my fault.  On Friday night he insisted that I had to give him the shot and Gabby was to hold him down.  After he got the shot he was so upset that he decided to draw on his little chalk board he got for his birthday.  First he wrote his name at the top - Jonathan S.  Then he draw a stick figure to represent himself and he draw a line through it.  He said that this was him.  Then he draw another stick figure and said that it was me.  Then he said that my name was Jonathan and he said that his name was Lilo (from the movie Lilo and Stitch).  At the time I had no idea what was the point he was trying to make but I know that he was very upset.  Probably the most upset I've seen him for a while.

I was telling my mother about what happen and her interpretation was interesting.  Her suggestion was that maybe Jonathan saw himself as one of the good guys and that he had to change us to be one of the good guys.  Just like how Lilo had to change Stitch to be good.  Interesting theory - which I kind of like and makes some sort of sense.

Well ... on Saturday his aunt (who came up to spend some time with us for about seven weeks) bought the movie Racing Stripes.  She decided that she was going to watch the movie in the night and Jonathan was excited to see we had the movie that he could not wait to see it.  Somehow it came out that he has to take his shot first and he readily agreed.  He even sat down quietly and let Daddy give him the shot!  We were shock!  Even tonight when we decided to watch a home movie I made this morning - he sat down quietly to get his shot again.

Talk about one extreme to the other.  I must say though, that this is the first time we've ever experience Jonathan sitting down quiet and being full awake, while he gets his shot.  We had stop the practice of giving him two dollars when he took his shot fairly well, but I think he has to get doubly awarded for being such a good boy about it.

Tomorrow Jonathan goes for labs and I'm hoping that the labs show his white blood count being at a high level so that we can stop giving him the G-CSF shots.

Fifth induction phase - Day 6

Today is / was Jonathan birthday (depending on how you look at it).  It was his worst birthday since he has been born.  He spent the day vomiting - as regular as once an hour - give or take an hour or so.  The anti-cancer drug - Cisplatin is a horrible drug and usually causes nausea for up to five days after chemotherapy treatment is finished.  I'm just counting down the days - waiting until the weekend when his nausea and vomiting feeling should start to subside and he can have a more 'normal' life.  I use the word normal with a smile.

I think Jonathan is getting tired with all the vomiting.  Last night - he had an episode of vomiting and I remember him saying, "I want this vomiting to stop."  It's the first time I've heard him complain about anything in a while.  Well ... other than complaining about not getting his shots.  This time around Jonathan is weaker and you can see the toll the chemotherapy treatment is taking on his little body.  At least he is still fighting on! Going strong!

In two weeks time Jonathan goes for another round of test.  A CT scan and a bone marrow aspirate.  I'm hoping the results from the bone marrow aspirate come back negative for cancer cells.  They are not going to do a bone scan so we wouldn't know if the secondary sites have shrunk - but the CT scan is to give the surgeons information for Jonathan's surgery.  I expect that about a week or two after that for Jonathan to get undergoing surgery to remove the remaining amount of his primary tumor.  I've always thought that Jonathan will be the first NB (neuroblastoma) patient to have the primary tumor shrink completely and not require an operation - we'll see if that thought comes to pass.

After his surgery, Jonathan takes about three weeks to recover and goes in for his sixth and (hopefully) last round of chemotherapy.  In this case we will need to make sure that his wounds have healed completed because if they have not and he starts his six induction cycle - it will be major problems.  Primarily because after chemotherapy his counts drop including his platelets and hemoglobin - and with internal wounds that would not be a nice thing.

Although I'm worried - I'm not afraid.  Probably too stressed out?  Who knows!  I trust the doctors (as long as I keep on top of things - smile) and I know Jonathan will do his best.  Hopefully next weekend we can celebrate in a big bang.

Fifth induction phase - Day 4

I don't believe it!  It's been (literally) over a month since my last journal entry!  I'm so disappointed with myself!  My whole motivation of 'tracking' my thoughts and activities just went out the door for the month of April and the thing is the beginning phase was far harder than the stage we are in right now.  I'm hoping that today's journal entry marks the beginning of my being more regular - at least once a week - but aiming for twice a week.

A lot has happen over the last couple of weeks (no doubt) but overall things are going very well.  One of the biggest events was I returned back to work on the 15th of April.  I must say the 3 months I was aware from the office had multiple advantages, one of which is that I got a chance to reflect on my job, where I work and my career.  My conclusion is that I love what I do (more so now) and I really value what the company has done for me and continue to do for me.  The only thing I'll like to improve is my commute - 75 minutes driving or 2.5 hours by train (one way).  Not sure when we'll be able to fix the commute issue by moving further up the peninsula and closer to San Francisco but closer to when my lease expires we'll take a step back and see how things are going with Jonathan and his treatment.  My guess is that Jonathan will be right in the middle of his stem cell transplant so things might be too hectic and I'll probably have to do a shorter lease, such as a 6 months instead of a year in case I wanted more flexibility in moving.  Right now I'm not stressing it - I've been commuting for great distances for a while so a couple more months isn't going to kill me.  All in all my return to work has been great!  I'm more motivated, the company is doing well, the team is growing - I'm in a good place.  At least it's one less thing to worry about and for that I'm extremely grateful.

Things with Jonathan are going well.  Jonathan has returned home after his fifth round of chemotherapy treatment.  The fifth round, like the third round, has the anti-cancer drug Cisplatin and it is one of those really terrible drugs that causes a lot of nausea and vomiting.  I remember during the third round Jonathan vomited for at least 5 days AFTER leaving the hospital.  One day he vomited 10 times during the day.  I was really trying to extend our stay at the hospital but of late they have been having bed shortages so unless a patient is really sick they really have to keep patients moving in and out of the system.  The good thing is that we got to stay and extra 12 or more hours, i.e. instead of leaving Sunday evening we left Monday at lunch time.  I suspect that Gabby will have to make multiple trips to the clinic so Jonathan could get hydrated and receive his anti-nausea medications via his catheter rather than his mouth.  The disadvantage of Jonathan taking medicine via his mouth is that he can still throw up his medicines and if that happen we cannot give him a new dose until the time expires because we don't know how much his body / stomach digested.  With his catheter lines - it goes directly into his blood stream so it's a faster absorption and better reaction.

The other thing that has happen is that Jonathan has lost the hair by his eyes - his eyebrows are completely gone and his eye lashes are almost gone.  The weird thing is that the hair on his head has started to grow back - not a whole lot but if you look carefully you can make out the new hair from the old one.  He still looks bald but we've gotten so accustomed to him looking like and it was never really an issue.  Plus I cut my hair really low as well - almost bald but without shaving - that it has become natural for me as well.

The funniest thing happened to us today while we were getting ready to leave the hospital.  Generally I try to experience as much of Jonathan's treatment as I can, for example when he had to get his first shot, I had to experience it first.  Well, for the longest while I've wanted to have the experience of getting an NG tube down my nose into my stomach.  First I had asked my (personal) doctor and she said no and today I was asking the nurses and for the longest while they thought I was kidding - but in the end they said they couldn't do it - for liability reasons.  I'm kind of disappointed because I've heard this is such a terrible thing to have done and Jonathan has had it done three times to him already.

Actually, last night (Sunday) he threw up so much that his NG tube came out of his stomach and out of his mouth.  It was my turn / night to stay at the hospital and I remember while it was happening I beeped (press the call button) for a nurse to come and help.  Well when I did not see the nurse respond quickly I beeped again.  In the end - after Jonathan's vomiting had settled down I asked him if he could hold the container so I could get a nurse.  The problem was that the NG tube was still going through his nose and out of his mouth and I wanted a scissors to cut the length so I'll have less tube to pull out of his nose.  I remember going out his room and his nurse saw me and started to explain that the medicine I had requested (earlier) was approved by the doctor - but I just cut her short and said I need a nurse in the room now!  I remember quickly turning around and walking back in the room with the nurse right behind me.

What brought a smile to my face was that a short while after the charge nurse came in too.  I'm not sure if it was just to help out or because of my initial 'tone' but I found it was kind of funny.  The good thing is that the charge nurse knows us well and is a cool guy so I (truly) believe it was more of wanted to help out because they didn't know what was the issue.  I guess with Jonathan doing so well (at least in comparison to the other patients) that they didn't really expect anything major to happen.

The tough thing was that since his NG tube came out - we would have to repeat the process of putting back a new one.  I remember the first time I was telling the nurses that Jonathan needs more than two nurses to hold him down and they didn't believe me.  It actually takes four nurses to hold Jonathan down while they but the NG tube down his nose to his stomach - so that gives you an idea as to how horrible the process must feel!  Gabby has reached the point where she cannot help or be in the same room when they do it - so she doesn't help out anymore.  Jonathan cries and begs so much that it is totally heart wrenching for her.

So since I was in the hospital this would have been my first time of actually seeing the process done.  The plan this time was to wrap him up in a blanket to immobilize his arms so that he doesn't scratch and kick as much.  Well, when I wrapped the blanket around him he started to ask, "Daddy what are you doing?"  When I put him on the bed, I think it all clicked and he started to cry out, "No, no, I don't want it."  This time, as we have done in the past, I asked him if he'll take his medicine via his mouth?  You see, unlike other patients, Jonathan does not really need the NG tube since the tube is really to feed patients who are really sick and don't want to eat and are losing a lot of weight.  In Jonathan's case, he has had a really good appetite and his weight has been fairly steady, so the NG tube was primarily for giving him medication.

Well, to our surprise, when he said yes he actually took the medicine via his mouth.  It's Monday night and he has been good with taking the medicine via his mouth so hopefully this time we don't need to put an NG tube down his throat again.