First induction phase - Day 9 - back at the hospital

Wow - what an intense couple of days!  Every time I feel like I'm getting back control over my life, something new happens and put everything back into a spin.  I think the hardest part right now is the continual losing control and the continual process of still learning new things.  I've resigned myself that I have to read the book on childhood cancers that was recommended to us by our social worker.  Actually I was saying today that I would not go on the computer until I have read the entire book - but I guess that was an unrealistic goal.  As I could imagine Gabby saying, and others who know me, it's fairly difficult to pull me away from a computer.

Today was one of those rough days.  Jonathan woke up around 3:30 am with a temperature of 101.9 degrees.  One of the things they told us when we were being discharged last week Friday, is that if Jonathan ever got a temperature of 101.9 then he has to be admitted to the hospital and a course of antibiotics started immediately.  So at 3:30 am when we got this high measurement - we knew that Jonathan was going to go back into the hospital.  I didn't mind going back in, but my fear was that he got an infection and I was concerned about how his body will handle the infection - since I already knew that his immune system was weak and his white blood cell count was low.

What I didn't understand until later on in the day was that cancer patients' white blood cell count continues to drop even after the chemotherapy treatment stops.  What actually happens is that around day ten to fourteen (of the induction cycle) the white blood cell count and their immune system drops to their lowest and it is in the third (and last) week that the cell count and their immune system picks back up.  So it was with a bit of surprise when I heard from the doctor that Jonathan's white blood cell count had reached zero!

We arrived at ER around 5:45 am and because his white blood cell count was zero (there is a special term they use but I cannot remember what it was) he was admitted into ER immediately and put into a private room.  This was to prevent Jonathan from getting any infection from both patients and staff and to limit his exposure to other people.  Actually - until he was in his room - he had to wear a face mask to filter out the air as best as possible.

When we got into ER his temperature had dropped to around 99.x (where x is some number I cannot remember) and we were wondering if his high temperature was due to Jonathan sleeping close to the heater.  Even if it was - this time I would have still wanted to go to the hospital because it was getting a bit taxing for us taking care of him at home.

Prior to today - Gabby and I hardly got much sleep over the last couple of days, i.e. Saturday to Tuesday.  If we got two hours of continuous sleep - we got a lot.  I had reached the point where I knew I was exhausted and that sometimes I felt worse waking up from a sleep that before I went to sleep.  Although we were glad to have Jonathan at home - and I know he was happy to be home as well - it was more difficult for us.  Part of the problem was that we didn't have the health care professionals at our side day and night - as when we were checked into the hospital - so every new problem brought more worry, more unknowns and more panic.  Okay, I admit, maybe I tend to panic more than Gabby, but wow, this is such an experience!

The other thing that made staying at home most difficult was that Jonathan developed severe mouth sores throughout his entire mouth.  Unfortunately this was one of the side effects of the anti-cancer drugs - but it meant that Jonathan was in too much pain to even do something as simple as drink liquids - even water.  Also, when we went into Oncology on Monday - his weight had dropped to 34 pounds!  Wow - 34 pounds - that is a weight lost of about 10 pounds since this all started two months ago.  It also meant that Jonathan lost about 25 percent of his body mass!  Boy, I wish I could do the same thing, but of course under healthy circumstances!

One of the main thoughts going though my mind was that Jonathan was going though a lot of pain.  I didn't understand why such a small / young child had to go through so much pain, and frankly, I thought it was unfair that he had to go through so much pain.  At times his pain could be constant, or his pain could be due to reactions to drugs - such as vomiting, or his pain could be due to his life being completely changed to from what it was before.  My son, for those who know him, is so active, that this must be a big change in his life.  As his Pre-K teacher so kindly puts in - you know that Jonathan is not in class because he has such a (vocal and energetic) presence in his class (smile).  What I wouldn't give to see Jonathan's energy levels return to what it was before all this started!

As the day progressed - Jonathan developed another fever around 10:30 am which also happened to be the same time he was being transferred from ER into a room in the children's hospital.  This meant that Gabby and I would have had a bit more space in the room to get some sleep.  We were so tired that I lay down on Jonathan's bed in ER and got about an hour's sleep.  When I got up at 9 am it was Gabby's turn to try and catch an hour but unfortunately Jonathan woke up about 20 minutes later so she didn't get to rest as long as she would have like too.

By the time everything settled down - around 2 pm - Jonathan had taken a dose of Tylenol - and started to perk back up.  The problem though was that Jonathan needed a blood transfusion because most of his counts were too low.  I could also see that he was weak because whenever he would hold something his hands would shake and it would be difficult for him.  I was actually looking forward to the blood transfusion because the last time he got one - after his biopsy surgery - his energy levels went back up.

Jonathan is doing much better now.  They started his blood transfusion tonight and was resting comfortably.  Gabby was also able to get some sleep in the hospital and I got a couple hours at home - and I didn't have to take any sleeping pills to go to sleep as well (smile).

One of the things I'm grateful for is the tremendous show of community we are getting from Jonathan's school and parish system.  I've always meant to journal these thoughts but never got around to doing so.  I remember when we moved back to San Jose about two and a half years ago - after having made the stupid decision to move to Fairfield because the rent was cheaper, although the commute was longer - that I didn't know what community to join.  A couple months after I moved (back) to San Jose my spiritual director had encouraged me to check out three communities - but he had strongly recommended St. Lawrence.  Although it took a while to get 'integrated' into the St. Lawrence community - I've made a couple of friends and learnt many good lessons and had many good experiences - especially working with the youths.  I remember my first confirmation retreat and how during the retreat everyone got to see a totally different side of me and was shock to learn that I'm not as stiff as they thought I was and could be 'semi-cool' - I wouldn't go so far to say cool (smile).  I have had a lot of good memories and I really am pleasantly surprise to see how everyone is rallying around Jonathan both in thoughts and words of comfort.

We suspect that Jonathan will be in the hospital over the next couple of days - but the good thing is that he is not in isolation (as yet - we are hoping that his bacterial infection is gone) and we are hoping that he can go to the big play room on the third floor tomorrow to have some fun.  He really enjoys going to the play room.  He also got his very own Teddy bear with a catheter for him to take care.  I'm much more encouraged to see him willing to do some medical play.  We've been told that having the kids do medical play allows they to express their feelings about what they are going through and helps them to cope with and internalize this experience.

My two biggest fears right now are how well will Jonathan fare with this experience, and how do I integrate my work life with this experience.  I would like to think that things would be 'easier' for the next induction cycle - but I think I'm coming to realize that the only easy thing about the next induction cycle would be that I have the knowledge but not necessarily easy in terms of what Jonathan may have to go through.

As I end this entry - I wanted to let all our friends know that we love visitors.  One of the services we have request at the hospital is to have a volunteer spend some time at Jonathan's bed side to play with him - but volunteers are few and far between so we are not sure if this need will be fulfilled.  We are so tired now, that we only have energy to help take care of Jonathan but not play with him as much as we would like, and this is one great thing that visitors can do so well.  The only catch is that receiving visitors might be risky over the next day or two - as Jonathan's immune system is weak - but it's a question I'll have to bring up with the doctor's tomorrow.  The general rule about visiting is that anyone who has or is recovering from any kind of illness cannot enter the ward - much less see the patient - but I'm hoping towards the end of the week - it will be cool to have visitors.  Of course - Gabby and I can have visitors and sometimes it's great to see people just to get a break from it all.