Second induction phase - Day 0

Jonathan started receiving his anti-cancer drugs at 6 am today (Thursday 24th February).  Instead of him taking the usually two hours to get hydrated before starting the anti-cancer drugs - he took about 6 hours - or else his chemotherapy would have started since 12 am in the morning.  I don't mind too much - it meant he got a fairly peaceful rest, i.e. a sleep without having to go through the yucky feeling that comes when on chemotherapy.

Right now we are in a private room, i.e. the rooms they use for kids who have to be in isolation, either due to a bone marrow transplant or an infectious disease.  Jonathan has neither but the reason we are in a private room is that there are no other rooms available.  We knew since Tuesday that the hospital was full and that when Jonathan does his physical and draws lab (draws blood for the labs) the possibility existed that we may have to either wait or go home and come back.  Fortunately we spent a good portion of the afternoon chatting with the nurse practitioner and Jonathan's primary care doctor that our wait didn't seem too long.  Coupled with the fact that Jonathan wanted to play in the day room - a family room in the ward called 3 South - and was waiting for the 'big play room' to open at 6:30 pm so he can go in for their activities helped the afternoon go by.

Our weekend home during his recovery was an interesting one.  Actually the entire first induction cycle was an interesting one.  For the first couple of days - at least from Wednesday to Sunday - Jonathan was a 'mommy's boy'.  He didn't want anything to do with Daddy.  He also took a while to settle down and Sunday was the first time that we saw Jonathan and Arielle playing together with their toys as brother and sister without any big arguments and fighting.  His general pattern over those days saw him being generally grumpy for the entire morning and some of the afternoon - with him 'warming' up around mid-afternoon.  Generally he ate a little bit of food for breakfast - but by around 3 pm Jonathan will come and say, "I'm hungry".  Just those two little words and his entire demeanor would change.  He would eat, get more active and we would see a glimmer of his old self.  As the days went by - from Wednesday to Sunday - we progressively saw more and more of the old Jonathan.

By Monday, Jonathan was recovering nicely and I have to say I started to see a shift from him being grumpy for the first part of the day - to a slow return to his regular self.  The tough thing was that we knew he was going back into the hospital on Wednesday and we didn't have the heart to tell him.  We knew it was going to affect him - because on Monday we went in for a consult for his stem cell collection and he was not too happy to be going back to the hospital - even though it was just for a visit.

His mentality had improved so much - that by last night - he was laughing, playing and just being plain ole Jonathan - his Pre-K crew and teachers would understand that very much (smile).  We were so loud last night that he called me over to his bed to come play with him, and wanted to tickle me too.  In some regards - I was glad to see him in such good spirits even though he was in the hospital.

This time around - we are wiser and more knowledgeable.  We have learnt a lot from the first cycle and have started to apply some of those lessons immediately.  For instance - instead of waiting for him to get nauseous, we have started him on full doses of three anti-nausea medication.  Our goal this time is to be very pro active and make his stay as comfortable as possible.

Thoughts of Arielle - how she feels

The last couple of days have been very interesting.  There were a couple of things that I didn't realize before that has now started to dawn on me.  The first thing has been a realization and an insight into how this might be affecting Arielle.  It was during a conversation with an Aunt on Sunday that I've come to see some of the changes Arielle has had to go through.  Before all this started - about four weeks ago - Jonathan and Arielle were the best a parent could ask for in terms of playing and getting along as brothers and sisters.  Generally they got along very well, knew how to play together, and frequently wanted each other to be around whenever they have to play or go somewhere.  Of course they had their little fights and arguments - especially when it came to sharing - but when we observed how our kids behaved when playing together versus how other siblings of a similar age difference play together - it was totally different.

One of the things that happened when Jonathan was admitted to the hospital - first for his biopsy and then for his first rounds of chemotherapy - was that his personality changed.  He became very grumpy and didn't want to interact with people - sometimes with even his parents!  Jonathan would also push people away - as had happened to Arielle and although Arielle was trying to be a nice, caring sister - she would not have understood why he was pushing her away - both physically, as well as emotionally.  It got so bad that even while Arielle will want to play with some of Jonathan's things - he would behave badly by crying and taking away his toys from Arielle.  Over time I can see how that will affect a child - especially a two year old like Arielle and how that must have hurt her - even today.

Coupled with her big brother pushing her away - Arielle had to deal with not having two parents at home all the time.  She would frequently go a couple nights without seeing daddy (since sometimes I might do the longer shifts) or she would now have less time with her parents when she does see them because Gabby and I would have had our own stresses to deal with before spending time with her.  We were luckily that through it all we first had our Aunt and Uncle in Hollister to help with giving Arielle that care and extra attention she needed and then having Gabby's parents with us as Jonathan got admitted into the hospital and to this very day.

One of the things I have noticed is that Arielle would (at times) tell us that "I don't like you", "I'm not happy with you" but that is usually when she is stressed or frustrated.  One of the things we are doing now is having both kids sleep with us in our bedroom.  Partly because we don't have a choice and the kids wouldn't let us - and partly because they want the company.  The great thing is that the kids love to 'camp out' so instead of having all four of us squeeze up in the bed - the kids insist they have to sleep on the ground on their sleeping bags.  So what we've done is laid so much stuff down on the ground that it's almost like sleeping on a bed.

It will be interesting to see how Arielle adjusts over time - and I am recognizing the need to utilize more resources at the hospital - such as social services, child play, and psychiatry to both teach us and help the kids deal with these tremendous changes in their lives.

First induction phase - Day 22 - Jonathan and Arielle

We are now on our way back home from the Japanese Gardens. It was a great outing - everyone enjoyed it immensely. Jonathan had just finished eating a cookie and some of it got stuck on his teeth and we were teasing him about how funny his teeth looks. Here Gabby captures a picture of the kids in the car after we were (all) laughing about how his teeth looks.

First induction phase - Day 22 - The kids and Daddy

It's Sunday and the weather man's predictions are correct - rain for the entire weekend! We got a short break in the rain so we decided to take a short drive to the Japanese Gardens close to home. Here the kids and I pose for a picture that Gabby takes - notice the matching bald heads of Jonathan and daddy (smile)

First induction phase - Day 20 - Mommy and Arielle

It's Friday (late) morning and it's the start of our weekend for Jonathan's recovery. The weather man says that we have two weather systems back to back so it's going to be rain for the entire weekend - but we got a break and the sun is out so we decided to go to the zoo in San Francisco.

Here is a picture of Gabby and Arielle having a moment (smile) and making funny faces while I take their pictures.

First induction phase - Day 17 - ready to go home

Today has been the most active I've seen Jonathan in a long while! Yesterday his white blood cell count went up to 6.1 and today his count 'leaped' to 12.x (cannot remember what the decimal number is right now). Given that the range for white blood cells are between 5.5 to about 15.5 - this is very good news for us. Most of his other counts are within normal parameters as well and hopefully over the next couple of days the other counts will be fine, e.g. his platelets, etc...

Today started off with Jonathan eating his porridge (cream of wheat) and a boil egg. During the day I got a couple of smiles from him - all spontaneous - probably due to something he saw on TV. At lunch time when his lunch came he was so curious to see what it was that he burst out into the biggest grin I've seen in a long while when he saw it was a hamburger. From lunch time onwards - he got more and more active. During the afternoon he was watching some cartoons and was laughing very loud, and he kept moving about on his bed a lot - sometimes to the point of scaring me that he'll fall off.

I guess with all the activity he burnt out what little energy he had left and around 7 pm he started to get really cranky and we could see that it was because he was sleepy. So said, so done, he fell asleep between 7:30 pm and 8 pm. I'm hoping he does like last night and sleep though-out the night. He didn't get up until 10:30 am this morning and I got up around 8:30 am - so we both got a fairly decent rest (keeping in mind we didn't go to bed until 12 am that night) - compared to what we have been accustomed to over the last couple of weeks.

Other significant things that happened today was some discussion with the doctors about when they wanted to release him. The original plan (from discussions I had on Monday night and Tuesday morning) was to wean him off of the pain medication and release him on Wednesday. I was cool with the idea because I didn't want us to rush and go home to quickly - only to have something happen and for us to have to come back soon after. So you could imagine my surprise when the nurse comes in around 11 am and says the doctors want to release him this afternoon and they were weaning him off his pain medicine much faster than was discussed.

Well ... I was not to pleased ... especially since a change in decision was made without the doctors have the curtesy in discussing it with me prior to finalizing the decision. So after speaking to the doctor on call and eventually the team of doctors monitoring Jonathan's care - we decided to keep to the original plan and push back releasing him until Wednesday. So you could imagine my 'horror' a couple hours later when Jonathan is most active and making a lot of noise and low and behold the team of doctors come into the room to see the next patient. I look over to one of the doctors as she looks over and I say sheepishly that I kind of regret making my decision to push back on his release.

Looking back I'm glad it's still set for tomorrow - my thinking was to get a good 24 hours of him doing 'well' before he goes home. Tomorrow morning is going to be interesting as we have already begun weaning him off the pain medicine and I want to see how well he eats without complaining about the sores in his mouth and throat. Of course 'how well he eats' is a relative thing since he is not eating much - but if he can chew a couple bites without too much complaint then that is very cool.

My other shock today was when I found out that Jonathan only get a couple days rest before starting the second induction cycle. I was hoping that he would have gotten about two weeks - but no dice. The doctors don't want to give his tumor any chance to get resistive or grow back too large that they lose the effort done so far - and although I understand the reason completely - I was hoping he'll have a chance for more weight gain. The good thing about all of this is that now we have one induction cycle behind us and we have now established a baseline of things to expect.

Looking back, it was the most difficult three weeks I have ever had to endure. More difficult that when I got laid off during the economy downturn in 2001 for the dot com bubble bursting. More difficult than when I proposed to Gabby - okay, okay - I'm joking here - but the thought came to my mind while writing and I thought it was pretty funny.

So the plan this weekend is to try and do a lot of fun things with Jonathan. He cannot go into closed environments, especially where there will be a lot of people, such as supermarkets, churches, museums, etc..., but he can go out into the open air - so we want to try and go to the zoo and the park so he can have some fun. The other thing I have suspected is that his tumor has shrunk a great deal - but I don't have any physical proof as yet - just a feel and some things I have observed. After his second induction cycle they will do a CT scan to see how well the tumor has responded to the treatment. As a parent I'll like to believe that he will be the 'miracle' child that has the tumor gone after the second cycle - but I'm being a parent (smile).

First induction phase - Day 16 - improvement at last!

It's 3:45 am on Monday morning and it's my turn at the hospital.  I cannot sleep - or to be more correct - I could not sleep and coupled with all the little noises - did not get an opportunity to go to sleep.  The last couple of days were very hectic.  I remember starting to wonder (on Friday night) if Jonathan was not going to make it out of this first round of treatment.  Up till Friday - Jonathan's white blood cell count was still at 0.1 and there was no sign of change.  I know we were entering into the timeframe for his count to start increasing - usually about 10 days after chemotherapy has finished - but it was frustrating seeing Jonathan in so much pain.

The challenging thing is that until his white blood cell count went up - the sores in his mouth would not begin to heal - and until they heal - Jonathan would not eat - and until he eats - he will continue to lose weight.  I remember hearing from Gabby on Saturday - that his white blood cell count went up to 0.4.  Wow - we finally had some movement.  On Sunday his count went up even further to 1.7 and I cannot wait for it to reach the minimum of 5.5 and beyond.

Jonathan is doing much better now.  The sores in his mouth and throat have begun the healing process and the hope is that by Tuesday he will be able to go home.  I think the doctors were thinking that he could be released by Monday (today) but Gabby and I think it is a tad bit early for him to go home so soon.  We want to make sure he is really stable and can eat properly without pain management before we go home.

Looking forward, Jonathan probably has about two weeks home before he starts his second induction cycle.  I don't have the heart to tell him that he has to do this all over again - and we probably wouldn't tell him anything until about a day or two before he actually goes in.  The plan of action over the next two weeks is to try and fatten him up as much as possible.  My desire is that he'll gain about 5 to 10 pounds - but I'm sure the nutritionists will tell me that I'm dreaming.

The only other significant thing that has happened over the weekend is that I've taken my first ever sleeping tablet in my life.  I took one on Friday night and on Saturday night.  I was glad I took it - because I have a habit of going to bed and then my mind starts to 'churn' a lot of thoughts and I'm unable to go to sleep.  By taking the sleeping tablet - I didn't have to worry about any of those things - and I figure it probably took me less than 10 minutes to fall asleep with the help of the sleeping pill.

So hopefully things continue to look positive this week and Jonathan continues to improve - counts go up, eating improves, plenty weight gain, less grumpiness, and a happier kid.

Some general Info on Neuroblastoma

I've finally started to read the book on Childhood Cancers that the social worker at Stanford recommended.  There was a chapter on neuroblastoma that I found quite interesting and I wanted to relay some of that information here.  The following text comes from the book, "Childhood Cancer - A Parent's Guide to Solid Tumor Cancers".

Introduction

Neuroblastoma is a cancer of the sympathetic nervous system.  The average age at diagnosis is two years, and the majority of children are diagnosed before the age of five years.  While neuroblastoma can arise at any place along the sympathetic nervous system from the neck to the pelvis, more than half of these cancers originate in the adrenal gland in the abdomen.  Symptoms of this disease vary depending on the location of the primary tumor.

The sympathetic nervous system

The human body is equipped with an impressive information system.  The central nervous system (CNS) includes the brain and the spinal cord.  The brain acts as the central control room, while the spinal cord operates as a link to other important elements of the nervous system.   The peripheral nervous system (PNS) connects the CNS to other organs and systems.  The network of nerves that make up the sympathetic nervous system is part of the PNS.  Chemical messengers, called neurotransmitters, relay information throughout the body using these two systems.

The sympathetic nervous system performs automatically in response to the environment and emotions.  For example, if a person is surprised or angered, the sympathetic nervous system leaps into action by accelerating the heartbeat, increasing blood sugar, and cooling the body through perspiration.

The adrenal glands are small glands that sit on top of each kidney, and are responsible for producing many different hormones.  The adrenal glands has two parts.  The outer portion, called the cortex, secrets hormones such as cortisone and aldosterone that are used by the body for fluid and electrolyte balance.  The central portion, called the medulla, produces hormones that help the body respond to stress.

Who gets neuroblastoma?

Neuroblastoma accounts for approximately 8 to 10 percent of all childhood cancers.  Each year more than 600 new cases are diagnosed in the United States and an additional 65 are diagnosed in Canada.  Boys are diagnosed more often that girls, and there is a slight higher incidence among white children than among black children.  About half of all neuroblastomas are diagnosed by 2 years of age and about 75 percent are diagnosed before 5 years of age.  Neuroblastoma is the most common cancer diagnosed in the first year of life.

Genetic factors

Neuroblastoma arise spontaneously (no known cause) in the vast majority of children diagnosed with the disease.  Children with some disorders, however, have a higher risk of developing neuroblastoma.  Two examples of these associated disorders are Hirschsprung disease (a developmental abnormality that involves the colon) and von Recklinghausen neurofibromatosis (NF 1).

Approximately 1 to 2 percent of children diagnosed have a family history of neuroblastoma.  Affected children from these families are usually diagnosed as infants and have multiple primary tumors.  Children with familial neuroblastoma can have tumors that develop in various ways, however.  Some have tumors that spontaneously disappear, while others have a very aggressive form of the disease.  Chromosome 16 is the likely location of the gene that predisposes people to hereditary neuroblastoma.

Environmental factors

Although certain types of cancer have been linked to environmental factors, this is not true for neuroblastoma.  Many research studies have been conducted to evaluate possible environmental causes, but no conclusive answers have yet been found.

Staging

I'm only going to include the stage that was diagnosed for Jonathan.

Once a diagnosis of neuroblastoma has been made, the oncologist will order further tests and scans to determine the extent (stage) of the disease.  The International Neuroblastoma Staging System (INSS) was developed to provide researchers with a system to compare data and facilitate the international exchange of information.

Using the INSS, neuroblastoma is categorized into five distinct stages:

Stage 4: The tumor has spread beyond the region of the main tumor, to distant lymph nodes, bone, bone marrow, liver, and / or other organs (except as defined for stage 4S).

First induction phase - Day 11 - hair loss has started

It's 11 am on Thursday morning and Jonathan is doing some art and craft with a volunteer attached to the hospital.  He was grumpy in the beginning - but after I figured out that I needed to 'butt out' he started to interact with the volunteer much better.  It's good to hear him talking a bit, because usually he just complains or grunts (smile).  It's also good to hear how the volunteer interacts with Jonathan - her ideas and her conversations to help him get involved.  Right now they are drawing shapes and cutting it out and sticking it.  All the stuff he loves to do from his pre-K class.

Earlier today - I found out that Jonathan's platelets counts are still low.  Low enough that he might be getting another blood transfusion later today.  Hopefully this time his energy levels will get back up AND remain up.  I know that he is still spiking fevers - with him getting a fever of around 104 last night.  Right now - Jonathan is getting antibiotics on a regular basis and Tylenol every four hours to keep his fever in check.  I don't think they have found any bacteria in the blood cultures so it could be that his fever is due to a viral infection - but just to be on the safe side - since his white blood cell count is low - they will keep him on antibiotics.

The other significant thing that has started to happened is that Jonathan's hair has started to fall out.  Yesterday morning, Gabby noticed a couple strands of hair on his pillow.  Since yesterday I'm seeing more and more strands of hair on his pillow, blanket and bed.  Although his hair loss has started - it's not noticeable as yet.  He still has a full head of hair - but we know the process has started.  I also think that with his hair falling all over the place - it might be causing his skin to itch - and the nurse was telling me that at this stage patients normally shave their hair - but with his platelet count being low - it's not something we can do now.  Regardless - I don't think it is something that Jonathan will let us do because he does not want to go bald.

So the expectation now is that Jonathan's white blood cell count will probably stay down over the next couple of days and that by the weekend they should start coming back up.  As his white blood cell count start to come up - the sores in his mouth will go away as well.  I cannot wait for his sores to go - and I'm hoping he has about a week or two before his next induction cycle begins - because I really want to start fattening him up (smile).  This is one occasion in which he can eat some junk food besides the healthy stuff as well.  I'll probably try to get him to take Pediasure (or Ensure) between his meals so that way he will at least get his daily recommended amount of calories and his eating food will just be extra.

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.

First induction phase - first day home

Jonathan and I are home.  We are lying on the bed and just chilling.  Actually it's more like I am chilling and he is recovering from his treatment.  Definitely a bit less stress that earlier in the week or last week for that matter - but at least a little wiser and more knowledgeable.  Jonathan was released from the hospital yesterday afternoon - around 4 pm and after packing up the car and driving - we probably arrived home around 5:15 pm.

Earlier that day (Friday) and the day before, I had the privilege of giving Jonathan his G-CSF shot.  In order to prepare for giving him his shot I had decided earlier in the week I wanted to give myself one so I can get an idea as to what my son is going to go through.  So on Tuesday the nurse brought some extra needles and some saline solution and I prepared to give myself a shot in the leg.  Let me tell you - I held that needle over my leg and I just could not push it in.  Gabby was watching me and she 'volunteered' to help and I realize that it did not hurt.

So the next day I got enough courage to do it myself and I gave myself a shot in the arm.  The needle did not hurt going in, but there was a little sting as I injected the saline solution into my arm.  I suspect the actual sticking of the needle did not hurt because Gabby was pinching my skin so hard I did not feel it (smile).  The joke that day was that if Gabby really wanted to pinch me - she didn't have to use the shot as an excuse (smile).  So now I was ready to give Jonathan his shots.  His first shot was on Wednesday but Gabby was staying the night and by the time they got the shot prepared I had already left.  So I gave him his second and third shots.

The last two days in the hospital also saw us having some issues with some of the medical personal.  It had got to a point where we had a 'mini-' argument with one of the on-call doctors and although my 'aggressive' persuasion skills are helpful in some situations - Gabby took over for some portions of the discussion.  The good thing is that this is all behind us now - and we have a better expectation of a lot of things, from Jonathan's medical treatment, hospital procedures, how involved we should be in external processes, etc., etc.

One of the things I've learnt over the last 24 hours that Jonathan has been home is to reset my expectations.  We had a mini-scare last night when we thought Jonathan was getting a low grade fever.  Since the chemotherapy treatment destroyed some of his white blood cells (among other things) - Jonathan is very susceptible to getting sick - and if he has a fever of 101.9 he has to go to the ER and get admitted.  I've now come to realized that although Jonathan is home - it's just a change of scenery and that he still needs the amount of care he has been getting when he was an in-patient.

All in all - I am glad that the first induction phase is done and I think we are more prepared for the second induction cycle in two weeks time.

First induction phase - Day 3

Wow - what a last couple of days.  I got so stressed during the day on Tuesday that I did some self-imposed time-out.  It was not the fact that I spent the last three nights and four days (non-stop) at the hospital with Jonathan but that he was refusing to take his oral medicine.  The other problem is that every time he takes his oral medicine, he will throw up everything which includes the medicine he has just taken.  I had already decided to wait until he had finish taking his anti-cancer drugs before trying again - but there was this nurse who insisted that we try again.  Of course I was very pissed and I made sure it showed on my face, although I couldn't really hide it because I was tired beyond exhaustion.  So when the nurse realized that she needed help to hold him down to force it, and he threw up again, I told her point blank that we will not be trying this until the next day.

I think that this was the first day I was actually looking forward to having Gabby relieve me and take 'her shift'.  I got an uninterrupted sleep - about 7 hours at home and I was still tired.  I did manage to get about 1.5 hours this afternoon and dreamed for the first time in weeks - and vex I had to get up too.  I think the tiredness is now setting in and I'm beginning to feel it more and more.  I feel sorry for Gabby as well - because she went to our doctor yesterday to discuss her sleeplessness and also got a checkout.  For Gabby - it's harder for her to fall asleep and she wakes up during the night so her sleep is interrupted much more than my own.  In my case, my sleep is only interrupted if the nurses want me to do something.  As I jokingly tell the nurse, my 'standing order' is for them to wake me during the night so I can help them, especially if it is to change his diaper, etc...  Gabby and I have jokingly reassured them that if I look grumpy if they wake me up - it's nothing personal - just my natural appearance (smile).

I think the other thing that freaked me out and why I imposed my self-imposed timeout was that I woke up Tuesday morning and started to panic.  I swear I was feeling nauseous and I started to think to myself - don't tell me I'm getting sick.  So I know that cancer is not transferable, but I wasn't sure if I got his bacterial infection or some other disease.  I eventually went back to sleep but later in the morning I called for the on-call doctor and he was explaining how exhaustion could affect how people interpret or react to things.  Fortunately that reasoning helped.

So Gabby is also spending tonight with Jonathan.  Apparently Jonathan was 'bouncing' off of the walls today.  I'm kind of disappointed I did not get to see some of the old Jonathan.  Apparently he is also being stubborn - so much so that he fell off of the bed, and even a chair, because he insists on doing his own thing.  The good thing was that no injuries occurred but I'm guessing he is just venting?  I went up to see him around 8:15 pm but he was sleeping.

I just spoke to Gabby on the phone - around 10:45 pm and Jonathan is throwing a serious tantrum.  He refuses to put on his diaper and is on the ground crying.  I could imagine how frustrated he must feel and I hope he burns out his tantrum soon.  I suspect the shot he got tonight probably contributed to triggering his tantrum.  What he does not know is that he has to get a shot every day until his next rounds of chemotherapy.

I guess the other part of my frustration is that I am so drained I have no idea how I'm actually going to do this five more times - for the other rounds of chemotherapy plus go though surgery and stem cell transplant.  I guess I went though a period of feeling hopelessness.  Luckily two of Gabby's colleagues stopped by to visit and it perked me back up.  I don't know if people realize how much it helps us just to get visitors.  It's a great distraction especially since we can talk about other things or make jokes.  I'm kind of wishing the Young Adult group at my parish has another poker night or something - as it will be a good excuse to go hang out and relieve some pressure.  I know Gabby's mom's group is going to have some sort of Valentine's Day party and Gabby was thinking of going with Arielle - and I know it will do her some good.  Of course, I'm looking forward to our date night as well (smile) which I'm hoping is soon.

The plan is for Jonathan to be released soon - maybe as early as Friday.  So if that happens and settles down at home - it will make things a little easier.

It's now 11:30 pm and Jonathan is still having his melt-down.  He has been crying for about 90 minutes but he is due for a dose of medicine (via his IV) which will also help calm him down.  I remember telling Gabby that they shouldn't wake up Jonathan to give him the shot - but Gabby does not like to 'put her foot down' with the nurses.  I know I'm staying with Jonathan tomorrow night until he is released - because sometimes - depending on the nurses you get - they can either work with you - or you have to work with the nurses.

So we have two hurdles to deal with at home - oral medication and shots.  Unfortunately there is a third hurdle to come, that is, Jonathan losing his hair.  Strangely enough - before all this started - Gabby was cutting Jonathan's hair and he said that he didn't want a bald head.  He was so adamant that he does not like a bald head.  Even when I cut my hair very short - almost bald - he insisted he didn't like it.  Gabby found, in retrospect, that his comments were so strange, so we already know that he is going to have a serious issue when he loses his hair.  Maybe if he does well at home - during his last week of the first induction phase - he could go to his Pre-K class and spend some time with his friends.  He will definitely enjoy seeing his friends and will definitely take his mind off of things.

I will end this entry with a positive note.  One of the specialized tests done on Jonathan's bone and bone marrow came back.  The results were negative - which is good news.  Apparently if the test came back positive - it will move him from the high-risk category to the ultra-high risk category (these are my own words - not the one from the doctor), so it's some positive news.  We've also been told that Jonathan is doing well - compared to other cancer patients.  I don't know if they are comparing him in relation to the induction cycle he is on, that is, are the other patients also on their first phase or are they later on in their cycle?  I do know that Gabby said she met a parent with a child in the same situation as Jonathan and the little girl was four years old and on her fifth cycle and she was not looking good.

Opps - i promised to end this on a positive note - well - tomorrow is a new day - we'll see how it goes.  I did manage to go to mass at the Cathedral at lunch time.  It was a nice service and a decent sermon.  Gabby also met a seminarian attached to the hospital.  I remember when our social worker was telling us about the clerical services and counseling offered - I mentioned that we prefer to speak with a Roman Catholic priest and that we know a couple in case we needed to talk to one.  So it was nice to have the hospital to spontaneously remember and bring a 'priest in training'.  The seminarian also gave Gabby communion as well.

Yep - definitely a better way to end this entry (smile).

First induction phase - Day 2

This picture was taken on Tuesday afternoon - the same day that I got 'stressed' and did my self-imposed timeout. Gabby's colleagues from the office had just arrived and brought some stuffed animals for Jonathan - but he was sleeping - so I decided to take a picture of Jonathan being at 'peace'.