Third induction phase - Day 12

One more week before Jonathan goes in for this fourth induction cycle and it's getting tiring.  The good thing is that we got some excellent news yesterday.  We met with the doctor in charge of Jonathan's care to discuss the results of the tests for reevaluating his tumor.  The meeting went well and we found out that Jonathan is responding well to the treatment.  His primary tumor has shrunk by 80 percent and the other spots on his body has also responded as well.  This is excellent news and paints a much brighter future for us and for Jonathan.  At least we have some concrete information that things are going well - besides what we have suspected for a couple weeks now.

The plan is that by the fifth induction phase for the secondary spots to be gone and for the primary tumor to have shrunk by 90 percent.  If that happens then Jonathan goes in for surgery to remove the remaining tumor and then one more induction cycle (round of chemotherapy) to get rid of any remaining cancer cells.  Right now he still has tumor cells in his bone marrow and secondary sites, for example, his legs - but as the doctor says, "Jonathan is doing great".

Other than that - Jonathan is doing fine.  His white blood count continues to drop - with it dropping to 1.x yesterday.  So I guess I was celebrating a bit too soon when his count was 5.x.  Jonathan also had a nose bleed on Wednesday afternoon and we had to take him into the day hospital for him to get a platelet transfusion.  We suspect that the nose bleed was because his platelet count was very low - at 18 - and since the nose bleed was from the same nostril with the NG tube - the irritation coupled with low platelets, i.e. not being able to clot, was the root cause.  What was interesting was that while we were waiting at the hospital Jonathan cried blood from one of his eyes as well.  Let me tell you - I have never seen that before in my life - and it sure wasn't a nice thing to see - but apparently the doctor was not alarmed and fortunately it didn't happen again.  Jonathan is now on a five day course of medication to help with his blood clotting and he is also getting a blood transfusion as I write this journal entry.

Other than things are going okay with us.  I've been doing some tests with my psychologist and although I know my clinical prognosis - it took me by surprise to actually hear the results and see for myself how I respond to things.  My own plan over the next week or two is to start exercising my brain.  I need to start getting out of this 'rut' and moving forward.  I need to start preparing for going back to work in mid-April.  My biggest fear is that I go back out to work and I 'trip' out and insult someone and end up getting fired.  I know my psychologist thinks I should not go back out to work - at least definitely not now - but with my private disability insurance preparing to deny my claim - after taking more than four weeks to process it in the first place - I have to face the inevitable.  I'm hoping the next two / three weeks are enough time to get back to normal and if not - I'll trust in God and know that things will work out.

Third induction phase - Day 10

It's Tuesday afternoon and Jonathan is on the computer on Disney.com website.  He loves Disney Playhouse and the things they have on the website are really nice for kids.  Other than Disney, he also plays on Sesame Street and Noggin, but I think Disney and Sesame Street are his favorite.  Jonathan woke up this morning very quiet.  Whenever Jonathan is quiet it usually means he is not feeling well.  By lunch time he had another episode of throwing up - but then he perked up right away.  Up to now he has only thrown up once - so that is good.  Yesterday was a bit rough for him - he threw up about four times - although he went through the weekend just fine.  Yesterday we also went to the clinic for his blood to be drawn for labs.  His counts are going really well - his white blood count (WBC) was at 5.5 instead of 0.2 so he is doing very well.  His platelets were a bit low - but not low enough to warrant a platelet transfusion.

Whenever we go to the clinic I also ask them to give him some anti-nausea medicines because this way he can get it through his catheter instead of taking it into this stomach.  There is also another drug he can get at the clinic that we cannot take home - hence another reason for making full use of our visit to the clinic.  The weekend was spent really nice.  We had a bar-b-que on Sunday with the kids 'helping out'.  Their version of helping out was watching since we have not bar-b-q in years.

We have also received some good news over the last four days.  Jonathan's stem cell collection results came back.  His stem cell collection is tumor free and the amount of stem cells remaining after the purging process is sufficient enough for his transplant.  This means that the stem cells they collected from Jonathan after his second induction phase is okay to use so we don't have to another stem cell collection - yippe!  The other bit of good news is that the 'Make a Wish' Foundation approved Jonathan's wish to go to Disney World.  So sometime towards the end of the year we will all be going to Disney World.  Our plan is to wait until his active treatment is finished so we can use the trip as a celebration!  If anything changes with Jonathan's condition then we will consider moving up the trip - but the current plan is to wait until the end - because we know he'll be cured!  One of the reasons for choosing Disney World instead of Disneyland is that we were hoping our relatives would be able to make the trip with us ... so we chose a location that will be closer - instead of all the way in California.

All in all ... it has been a good couple of days.  Jonathan's nausea seems to be waning and I'm hoping by tomorrow it is all gone as we'll like to do some outdoor activities towards the end of the week before he goes back in for his fourth round of treatment.  My thanks for the parents of the Pre-K students from Jonathan class for helping us over the last week and continuing to help us during the next couple of weeks.  My thanks for all those continuing to pray for Jonathan and us.

Third induction phase - Day 6

I've been thinking a lot about whether God's hand has been a part of Jonathan life and his treatment.  My conversation with my spiritual director last week has been profound and has me finally believing that God's hand has indeed taken a role in Jonathan's treatment.  The example my spiritual director used was a mosaic.  When a mosaic is looked at too closely, all that is seen is the individual 'tiles' that make up the mosaic, but when a mosaic is examined from a distance the wonderful picture is revealed.  I (would like to) believe that my difficulty was that I was looking at the mosaic too closely and that I did not see the big picture, the beautiful creation.

If I step back a bit, God's hand is more apparent.  When we first started Jonathan's treatment plan, we had no expectation that Jonathan would have gained weight.  Our main concern was trying to figure out how to maintain his weight.  With Jonathan's weight dropping to 34 pounds, it was really astonishing to see his weight go back up to 40 pounds, especially since the nutritionist mentioned that the most you can gain per week is between 1 to 2 pounds.  Now that I think more about this statement, how did Jonathan gain all this weight?  Was the scale wrong?  Did he really lose all that weight?  Or did we get the wrong information?  I don't think so, because I remember another patient's mom telling us that her son took a couple treatment cycles before he started gaining weight.  Jonathan was able to do it over one treatment cycle.  Sounds unbelievable, doesn't it?

Another experience that lead me to believe that God's hand is taking part is that for the entire second cycle, Jonathan went through it with ease.  From the first day of chemo to the day before the third cycle, Jonathan was eating, playing and being like the Jonathan I knew before this all started.  The thing that really startled us is this - during Jonathan's second phase the plan was to collect 15 million stem cells over the course of 3 days, up to a maximum of 5 days.  Would you believe in one day they managed to collect 21.6 million cells!  In one day!  And to top it off, we got the news today that his stem cell collection is tumor free and the post-purging process yielded more than 1 million cells!  This means that we don't have to do another stem cell collection, and Jonathan has the stem cells he needs for his transplant at the end of his chemo cycle.

What will really top it off (not that I'm asking God to prove anything) is to find out that the primary tumor shrinks completely away so that he does not need surgery.  I've been told multiple times that all Neuroblastoma patients require surgery to remove the primary tumor regardless of how well they respond to treatment.  Let's see what happens when his time come in May, which, coincidentally is the month for both his and my birthdays.

As a cousin of mine puts it most succinctly, I probably don't see God's hand because we are 'in' His hand.  If this is true, I am indeed grateful for my son, but wish I had a more intellectual experience of being in His hand as well.

Today is day 6 of the third round of chemo and the Cisplatin anti-cancer drug is really taking a toll on Jonathan.  He is still battling a lot of nausea, having vomited at least ten times today.  Jonathan and I spent the day at the hospital (out-patient) clinic because I wanted labs done to verify his blood count.  While we were there, Jonathan got hydrated, because he has not been eating or drinking much over the last couple of days, and also got some anti-nausea medicines.  The good thing is that the clinic can administer his anti-nausea medicines via his catheter rather than what we do via his stomach.  This means that there is no chance of him vomiting the medicines out, and the clinic can administer other medicines that we cannot take home.

I'm hoping that he starts to recover from the nausea feeling soon because just now Jonathan will be going through his low phase and I don't want him to get a double whammy.  It will also be nice to be able to take him outdoors without having to worry about him feeling nausea or wanting to throw up.

Before I end tonight's journal entry, the other remarkable thing that happened today was that we didn't have to hold Jonathan down to take his G-CSF shot.  He still cried a bit and was going to put his hand to stop the needle, but he didn't fight or struggle the way he normally did.  I was so surprised that I had to give him three dollars instead of the usual two dollars whenever he gets his shot.  I would like to think that the anti-nausea medicines he got (which makes him sleepy) about half an hour before the G-CSF shot did not play a part in his lower resistance to the shot, but I guess I'll find out for sure over the next couple of days.

All in all, I'm very proud of my son and I am amazed at the strength he has to go through this experience.  If it was me, I don't know how I would have survived it all.

Third induction phase pictures - Day 4

Jonathan just got his G-CSF shot. He was too weak to fight and we were able to give it to him fairly quickly. I feel sorry for the little guy, especially with the nausea that is bringing him down. During the second cycle we adopted this strategy that we would give him two dollars every time he got a shot and he behaved 'nice' or else he'll get a dollar instead. The money is for him to save to go on his trip to Disneyworld that we are hoping that the Make a Wish foundation will approve. Here you see Jonathan holding his dollar - which he wanted (the only positive response we've gotten from him in hours). You can also see his NG tube from his nose and his two catheters by his stomach - which go through his left chest.

Third induction phase - Day 4

It's been a little over two months since Jonathan's diagnosis was confirmed as neuroblastoma - a childhood cancer.  It's the middle point of his chemotherapy treatment and it's great to be in the middle.  It would have been much better if we were at the end - if I could have fast forward time - but that exists only on the movies.

Jonathan was admitted into the hospital on Friday night (18th March).  Jonathan's chemotherapy was originally scheduled to start on Wednesday (16th March) but due to late scheduling of his tests - his admission into the hospital and starting of his treatment got postponed.  During the week (15th to 18th of March), Jonathan got every test 'under the sun'.  On Tuesday he got an echocardiogram and a bone marrow aspirate (a sample of bone and bone marrow was taken out by his hip bones).  On Wednesday he got an ultrasound.  On Thursday he got a CT scan while on Friday he got a bone scan.

On Thursday, for his CT scan, also saw Jonathan getting an NG (feeding) tube.  One of the major challenges we have had with Jonathan is his continual refusal to take oral medicines.  He is great with everything else - working with his catheter, changing his bio-path, etc... but giving him any oral medicines is a major issue.  We know that all the kids go through these issues - and Jonathan's refusal to take his oral medicines is just his way of trying to have some sort of control in these events happening to him.  Well - in order to have a CT scan - he has to drink 8 ounces of a 'contrast' solution and that is not a pleasant tasting drink - I know since I've tasted it - I'm in the habit now of tasting all or most of Jonathan's medicines.  On that day we had forced about 4 ounces of the contrast and he threw it up - so we knew then that we had to get the NG tube.  His tube goes through his nostril - all the way into his stomach.  So we can administer either his medicines or liquid foods without having to force him or have him taste it.  During the first attempt to put the NG tube - Jonathan was throwing such a tantrum that his finger got hooked on the tube and he pulled it completely out (ouch).  So after trying (unsuccessfully) to give him the contrast orally - they put the NG tube down his throat a second time.  This time they were successful.  Would you believe it took four nurses to hold down Jonathan for this procedure?  That's to tell you the amount of spunk that my son, Jonathan has in him.

I must say I was rather proud of him that day.  He did the CT scan without have to go under anesthesia.  He lay down on the bed and stayed still the entire time - Gabby says the scan took about 5 to 10 minutes.  A rather big achievement for Jonathan - given that he can hardly stay still - unless something is wrong with him.  Unfortunately, for the bone scan on Friday he had to go under anesthesia.  He was doing well - until we told him he had to take off his out jersey.  He was so upset - but the nurse upstairs told us he would have to take it off.  Imagine our surprise when preparing for the test that we were told he could put it back on!  We could have avoided upsetting the boy - but it was too late.  Once Jonathan gets upset he remains in that mood for a while - so in the end we relented and he was put to sleep.

Although we were admitted on Friday night - we were a bit surprised to get in because during the day we were told that there was a waiting list with about five other patients ahead of us.  Of course I (gently) reminded the nurse that Jonathan was originally supposed to start his treatment on Wednesday (hint, hint).  In any regards, we were on standby for a bed on Saturday night.  Imagine my surprise when we got a call around 6 pm on Friday night to let us know that a bed would be available around 8:30 pm.

I would estimate we finally got into the hospital around 10 pm and settled down by 11 pm.  The entire troop (family) went - so Arielle, Gabrielle and Gabby's mom - because Gabby wanted company to drive back home - since it would have been very late and she was very tired.  Jonathan's hydration started around 11 pm and continued for two hours.  He started to receive his anti-cancer around 1 am on Saturday.  This third round saw him getting two different anti-cancer drugs - Etoposide and Cisplatin.  Fortunately these drugs go in over a 1 hour and 2 hour period respectively, unlike the previous drugs that went in over a 6 hour and 24 hour period.  Fortunately, too, these drugs did not cause mouth sores, like the previous drugs, but these drugs cause more damage to his liver and causes more nausea - even lasting up to five days after the administration of the anti-cancer drugs.

I spent the first two nights with Jonathan - and those days went fairly well.  Like the previous cycle - we had him on three anti-nausea medicines around the clock.  Unfortunately, as each day passed - he slowed down - until on the third day he had his first episode of throwing up.  By his fourth, and last day, Jonathan had threw up multiple times and was on four anti-nausea medicines.  Jonathan was released from the hospital on Tuesday - the fourth day and during the drive home he threw up as well - fortunately we had a container with us so no mess in the car.

It's Wednesday - the day after the hospital - and Jonathan has thrown up multiple times during the day.  He is weak, does not move, does not talk.  He spends all his time lying in bed - looking around or looking at TV (if he is in the living room).  We have to start back giving him his G-CSF shots and I'm not looking forward to it.  I'm hoping his pain and nausea feelings go away quickly and he starts feeling better so that we can have some play time together.

Second induction phase - Week in Review

Wow - it's been over a week since I've made an entry in my journal.  I'm a bit disappointed that I've reduced or slowed down my effort to journal but I don't think I can continue to journal as regularly as I did in the beginning.  I think my new goal is to try and write at least one journal entry a week and if I've managed to do more than one a week - then that's good - else no stressing about it.  My only 'stress' is that I want to make sure I continue to track my thoughts as events occur and I know when I let too many days pass - I tend to not remember things to accurately.

Jonathan continues to do very well in this second round of his chemotherapy cycle.  Last week Sunday saw the start of the increased dosage of his C-GSF shots (injections).  His increased dosage was three times the regular amount and I remember us thinking how are we going to give him three separate injections - when it is already difficult to give him one injection.  Luckily we were able to get a needle that could hold the entire amount of the increased dosage so Jonathan just got one 'stick' or one shot.  The only unfortunate thing was that we had to inject the medicine slowly to give his fatty tissue time to absorb it since injecting it too fast is a bit more painful - especially with the increased amount of medicine.

The increased dosage was to push his production of stem cells (and white blood cells) to the point where the stem cells would leave his bone marrow and enter in the (peripheral) blood stream.  This means that his blood could then be filtered to 'extract' the stem cells which would then be stored / freeze until all his chemotherapy cycles are completed for re-insertion or stem cell transplant back into his body.  Jonathan's stem cell collection was scheduled for three days - Wednesday, Thursday and Friday and the goal was to collect 15 million CD-34 or stem cells.  10 million would be sent to the purging arm as the 'primary' batch that will be used during the stem cell transplant and the 'extra' 5 million is used as two back-ups in case the 'primary' batch failed.  The purging arm needed this high number of stem cells because during the purging process a large quantity of the stem cells are lost / destroyed and the goal is to have at least 1 million stem cells remaining.

On the first day of Jonathan's stem cell collection - he had to be hooked up to an Apheresis machine which would draw blood from one of this catheter lines, extract the stem (CD-34) cells and return the blood via his second catheter line.  Since Jonathan's total blood volume is small - at least compared to an adult - the Apheresis machine is primed or loaded with blood from the blood bank - similar to if Jonathan was getting a blood transfusion.  If the Apheresis machine was not primed first - then the amount of blood that would have been extracted from his body before it was returned would have been too great and dangerous for him.  As we were getting ready to start hooking Jonathan to the Apheresis machine - we had to give him Tylenol as a preventative medicine - a standard procedure during blood transfusion.  In previous situations where Jonathan has had to receive blood transfusion - he only got Benadryl and that was given intravenously - via his catheter.  The problem on this particular day was that the Tylenol had to be given orally and taking oral medicines is a big issue for Jonathan.  Gabby and I had to hold him down to force it down his throat and he was so upset about having to take oral medicine that he continued to fight and throw his tantrum for the next 60 to 90 minutes.  It got so bad that he pulled his catheter lines to the point where it started to hurt him and we were forced to change his bio patch in the middle of the Apheresis procedure hoping that it will  relieve some of the pain.  I must say - one of the things we have learnt well from the nurses and other medical staff - is the art of forcing a child to take liquids.  It's not a nice thing to do - but it is either forcing them to take it - or having the doctors put a tube down his mouth - which we are trying to avoid.

The collection on the first day took longer than we expected.  Instead of the usual three to four hours - it took closer to six.  This was due to Jonathan's catheters having smaller openings so the rate at which the blood could have been extracted was considerably slower than they expected.  I can tell you - by the time we left the hospital around 6:30 pm - we were so tired - it was unbelievable.  Added to our stress was a report from one of the nurses that I was rude to them during a meeting we had the previous Friday.  Our social worker came to chat with us and listen to our version of the events.  It was unfortunate that the nurse thought that I was rude - when I clearly was not - but all in all the entire situation seems to be resolved.  I also suspect that the other issue we have been having continually, i.e. the poor levels of communications have also been resolved as well and we see the future looking a bit brighter in terms of our interaction with the team.  I don't necessarily mean that everything will be smooth sailing - but we understand the processes now and know how to 'work the system' to avoid getting unnecessarily frustrated.

So by the time we reached home - between 7:30 pm and 8 pm - I was totally exhausted - mentally and physically.  We got a call around 9:30 pm from one of the Apheresis nurses.  They just got the results on the number of stem (CD-34) cells collected and it is 21.6 million!  Wow!  Could you believe it - we got 21.6 million cells in one go, in one day!  It was incredible!  It meant that Jonathan didn't have to go back on the other two days.  This was some really good news!  The only result we are waiting for is to find out whether the stem cells are tumor free.  Unfortunately this test takes a couple of weeks but if his collection is tumor free then we don't have to do another stem cell collection for the rest of his protocol (treatment).

The good news about his stem cell collection also meant that we had an extra day that we would be able to do some fun stuff.  On Thursday evening Gabby and I took the kids for a drive to Fresno.  My brother was in town for a couple days and wanted to spend Friday with us before flying back to Illinois on Saturday morning.  We thought the drive would have been a good fun activity - especially since the kids have been looking forward to seeing their Uncle for the longest while.  The drive was good - with the kids sleeping for about half of the way - which was a good thing because if we were home they would not have taken a sleep - but the drive turned out being longer than I had hoped.

On Saturday we went to an Easter egg hunt that the Gabby's mom group had planned and around lunch time we left to head up to San Francisco Zoo.  On Sunday we went by our Uncle and Aunt in Hollister and spent the day.  It was loads of fun because the kids love playing with the dog.  On Monday we went to the beach in Santa Cruz - mainly because Gabby has been wanting to fly her kites for the longest while.  All in all - the weekend was good and BOTH kids had a load of fun.

The rest of the week involved Jonathan having a lot of tests so that the medical team could re-evaluate his tumor (cancer) and verify how well it is responding to the chemotherapy treatment.  On Tuesday Jonathan had an echocardiagram and a bone marrow aspirate.  The echocardiagram is similar to an ultrasound - but involves examining the heart.  My main concern was the bone marrow biopsy and aspirate.  The biopsy involved taking a needle and inserting it into his back (not his spine but I believe by the region of his hip bone) to take a small amount of Jonathan's bone and drawing some bone marrow to test for any tumor cells.  There are two samples that are taken, i.e. two times the needle is inserted into his back.  Unfortunately the bone marrow biopsy - along with other tests such as CT scan and bone scan are done fairly regularly, i.e. once a month because no one test is conclusive enough to paint the complete picture.  I must say that Jonathan's recover from the bone marrow aspirate was excellent - with no apparent pain to the sites where the needles went.  As soon as he was home - both Arielle and Jonathan were running around in the porch - playing and having fun.

As I end today's journal entry I find myself wondering if God's hand is really involved?  Jonathan's reaction during the second induction cycle has been really remarkable and I think the doctors and nurses are surprised that he is doing so well.  Jonathan went for an ultrasound today and from what Gabby has told me - she believes that the tumor has shrunk quite a lot - but the CT scan tomorrow (Thursday) will let us know for sure.  I find myself thinking back to a phrase from a nun from Jonathan's school - the entire Saint Lawrence Elementary and Middle School are all praying for him - their prayers are knocking down on heaven's door asking for a full recovery.  I know other people are praying for Jonathan - which means even more prayers are knocking down on heaven's door.

I believe - as I've made in a journal entry after his first cycle that Jonathan would do well - but how do I tell that this is the hand of God or not?  Should I even care to tell or should I just say thank you - regardless.  This is definitely something to discuss with my spiritual director tomorrow but we are not out of the woods yet.  The only thing I know is that Jonathan has been having a great couple of weeks - which is beyond our (initial) widest expectation that such a thing could happen.

Second induction phase - Day 10

It's been a week since we've been out of the hospital.  It has been a relatively good week - at least we didn't have to hustle each day to the hospital and rotate turns on who's night it was to stay with Jonathan.  I'm glad I had one less thing to worry about, i.e. I didn't have to worry about Jonathan being in discomfort, or fighting a new illness or not having fun.  Jonathan had a week that he was able to spend at home, to sleep in his own home, eat in his own home and have fun doing stuff he is accustomed too.  It was still a stressful week for us, for me especially.  I've come to realize that as parents we might be an anomaly.  The anomaly being that we are very involved in Jonathan's care.  More involved that other parents might be.

I spent Wednesday, Thursday, and Friday morning chasing down some of Jonathan's medication - the G-CSF shots.  I had to talk to Jonathan's doctor's office, the home delivery people and my insurance company.  I'm not sure when it will all end but I woke up this morning feeling very tired of everything.

Last week we met with a psychologist.  I'm a little wary on his usefulness - but I also had my first meeting with my new spiritual director.  I don't feel so bad now - after speaking with both men.  One of my concerns was that I was getting angry dealing with all the medical staff.  For being so involved in Jonathan's care.  I thought it would have been much easier or that I could have depended on the medical staff at Stanford ... but I just cannot.  One of the things I've learnt is that we should not stop continuing to ensure Jonathan gets the best care.  The scenario painted to me goes like this:

If we were parents who didn't say anything - then the nurses and doctors would be inclined to do whatever they wanted and they know we wouldn't say thing.  Since we are parents that are VERY involved - then the nurses and doctors have to behave a little differently.  They would (or should) know that we wouldn't take any BS, that they have to make sure and give us the right explanations or else we'll ask them over and over - why.  They know that when the Seepersad's come they demand expert care for their ONLY son.  Of course this is taking a huge toll and I know my energy is slowing waning away.

The other thing I've learnt is that anger is not necessarily a bad thing.  Anger actually empowers you.  It is what you do with the anger that is dangerous.  Anger in itself is a neutral response and it is what I do with it that is important.  So I don't feel so bad about being angry or upset that things are not going right or that I still have to be so involved.  I'm not sure how much energy I have left to continue to fuel anger but we'll see how it goes.

The sad thing is that Jonathan has been expressing pain in his chest / upper abdomen again.  This is the spot where he has experienced pain prior to starting treatment.  This is the spot where his primary tumor is located.  We believe the pain is due to this tumor.  The only difference between now and a couple of weeks ago was that he is not on pain medications - so it could have been he had tumor related pain before but the medications were hiding it then.  I don't know for sure but I'm really worried.  I'm really hoping that my son is in the 40 percent group of stage 4 high risk neuroblastoma patients that survive this disease.

This week is going to be interesting.  Every day this week Jonathan has to go into the clinic so that they can "draw labs", i.e. draw blood to do labs.  Tonight (Sunday) we increased his G-CSF shots from 0.3 ml to 1 ml.  This time the needle has to stay in his leg a little bit longer, not only because it is more medicine but we don't want to put it in too fast but instead give the body enough time to absorb it so it hurts less.  Jonathan has to get this increased dosage until the end of the week - because this is the week they collect his stem cells from his (peripheral) blood.  They have schedule three days for collection - Wednesday, Thursday, Friday.  Because of the 'luck of the draw' for the clinical trial he is on - Jonathan is on the 'purging' arm of the trail and the during the purging process they tend to lose a greater amount of stems cells than the non-purging arm so instead of collecting 2 sets of 1 million cells, then have to collect 15 million cells instead - because 10 million is sent to the purging arm.  I'm not too worried about the amount of stem cells needed - just more worried about the future.

I've also taken a look at the claims the hospital is making to the insurance company.  Up to now - Jonathan's care has reached approximately $230,000 USD.  We are only finishing our second induction cycle and Jonathan's care has costed close to a quarter of a million US dollars.  Could you imagine if I didn't have insurance what would I have done?  It is just crazy!

So ... people say God doesn't give you more than you can chew.  Hmmmm ... I'm still waiting for the lesson to learn in this one ... but then again ... this could be because of free will and not necessarily of God's 'deliberate' doing ... who cares right now.

I've noticed though ... I know Arielle is suffering but I've reached the stage where she cannot be shielded.  There is a sick child and unfortunately the sick child is going to use up more of the energy.  I'm hoping Arielle goes though this okay ... but only time will tell.

Second induction phase - Day 5

It's been a while since I've made an entry in my journal.  I think it's for many reasons - one of which is that I'm tired.  I do have a lot of thoughts I should still be putting down - so that in the years to come I could look back and remember accurately what were my experiences - but I think it is taking a mental strain on me.

The last few days have been absolutely wonderful.  Since Jonathan started his second round of treatment - he has been doing really great.  This experience during his second round of chemotherapy is so different to the first one that it's like comparing night and day or black and white.

Here are the sequence of events as I remember them.  We were told around 7:30 pm on Wednesday that our room was ready.  Since Jonathan was in the play room having fun, we decided to stay there until closing time, at 8 pm, before heading to his room.  We finished moving everything to his room around 8:20 pm, including bring up the suitcase and other bags from the car.  Instead of hooking him up immediately to his IV lines, we decided to (try and) give him a bath because from our last experience he was in too much pain for him to get a running water bath, but instead got a cloth bath - which isn't really a bath but is better than nothing.

Around 9 pm we were all settled and the nurse started to take his stats and hook him up to his IV lines.  When Jonathan gets his anti-cancer drugs - they use both of his central lines - one line to deliver the anti-cancer drugs and the other line to deliver his various anti-nausea medications.  For this second round we decided to start him on his anti-nausea medications right away - so Jonathan was getting three anti-nausea meds around the clock.  The three meds were staggered so that he was receiving at least one med every two hours.

We had learnt much during the first experience and coupled with my meeting with the pain management team - we've decided that we are not going to be conservative parents anymore.  The thinking was to always try and give him enough medication so that he feels good and instead of concentrating on fighting the pain or discomfort, he can concentrate on playing, having fun or eating.  Given that this was a long term treatment plan - it made complete sense to go that route.

So around 9:30 pm on Wednesday night they started his hydration treatment, i.e. Jonathan had to get hydrated for two hours before starting on the anti-cancer drugs.  This was also the first time that both Gabby and I stayed overnight with Jonathan.  We say other parents do it - although there is a policy that says only one parent could stay overnight with the patient - so we asked the nurse and they said it was okay.

All I know is that I woke up in the morning and found out that Jonathan didn't start receiving his anti-cancer drugs until 4 am and 6 am on Thursday morning.  The 4 am was the combination of vincristine and doxorubicin, while the 6 am was the cyclophosphamide.  Apparently Jonathan took a little longer to get hydrated hence the delay.  I didn't really mind too much because it meant that he would have gotten another restful night.

Around 9:30 am was when Jonathan woke up and the day went very well.  Jonathan ate for most of the day, was talkative and in good spirits, and played well.  We were a little surprised, but very happy that he was going so well.  We thought, maybe the side effects of the anti-cancer drugs have not really kicked in as yet.

Jonathan woke up around the same time on Friday morning but this time he was not too eager to eat.  I also noticed that he was not very active and was keeping very quiet - definitely not the Jonathan from yesterday.  Around 10:30 am he told me that he had to poop but nothing came out.  Around 10:45 am I decided to brush his teeth and had just finished brushing his tongue when he threw up.  This was the first time that Jonathan threw up and he vomited so much that it spewed on my clothes as well - just to give an idea as to the quantity that came up.  He actually filled up the small container about half-way and by that time I had called for a nurse to help me and I got a bigger container.

Around 12:30 pm another nurse who had treated us in the past was recommend that Jonathan could go on another anti-nausea drug - and with my new ideas on pain medicine and the like - I was all gun hoe for it.  So around 1:30 pm Jonathan was now on four anti-nausea meds and by 2:30 pm a little of the Jonathan from yesterday started to show.  He started back eating, talking, and playing.

By this time we found it was unusual for Jonathan to be so active - at least compared to his previous induction cycle and started to discuss it with the nurses (and doctors).  Apparently some kids improve a lot for their second induction because during their first induction cycle they are normally sick from battling the cancer besides having to adjust to the anti-cancer drugs for the first time.  In Jonathan's case he was under real pressure from the tumor before he started his first cycle.  He had a lot of tumor related pain and was not eating with fever and other complications that got worse over time.  His first cycle seemed to have reduced the tumor somewhat so that this time around he does not have to deal with quite as much tumor related activity.

The other (medical) thing that happened during this rounds is that blood started to flow out of his central line.  I guess since he was more active there was more pressure being exerted by his blood vessels vs the flow from the combination of the vincristine and doxorubicin that his blood flowed out into the IV.  So what they had to do was attached another IV fluid bag to his line using a Y connector to create more pressure flowing into his body.  On all three days that he was in the hospital - Thursday, Friday and Saturday - we had the experience of his blood flowing out into the IV line.

The last (medical) significant thing that happened during this round is that both his central lines got clogged.  It was around 8 pm on Friday night when the nurse realized his lines were clogged.  They tried to push saline solution down the line to verify whether it was clogged and the syringe was not moving.  The option was to use a drug (cannot remember the name) that is inserted into the line and clears the clog.  The only problem was that Jonathan's intake of the anti-cancer drugs - specifically the vincristine and doxorubicin was interrupted.  The two nurses that were attending to him wanted to put a peripheral line in Jonathan so that while the drug was working to clear the line - it required at least 30 minutes - he would still be getting his anti-cancer drugs.  The only problem is that they would have to stick Jonathan in the arm to insert a peripheral line and that would not have gone well.

Well ... the night was already going crappy that I put my foot down and insisted that they call the on-call doctor.  I was even 'partially' blocking the door-way and told them rather flatly to get the on-call doctor ... because I didn't understand why they could not wait 30 minutes.  The short story was that the on-call agreed with me ... they didn't have to stick Jonathan and they would wait for the drug to clear the line.

By this time the charge nurse came in and he started to prepare his lines.  The charge nurse is actually a cool guy and we like him - having met him during our first stay.  During his preparing - he decided to do a pull, i.e. attempt to draw blood, from Jonathan's central lines and he noticed that one of the lines was not clogged.  So Jonathan was able to resume his intake of anti-cancer drugs while we waited for the other central line to clear.

By 10 pm that night - everything was clear and working properly.  By the way - Jonathan was most active on Friday night.  He was literally like his ole self.  So much so that I had to ask the on-call doctor if there were any drugs that would have been making him hyper.  Unfortunately there was one - some sort of steroid or the other - so that was a partial reason why he was behaving like his ole self.

All in all - this second induction phase went very well.  So much so that Jonathan was released on Sunday afternoon - the same day he received his last set of anti-cancer drugs - around 6 am to be exact.  His stay at home has been going fairly well as well.  We are hoping that he does not develop any mouth sores or fever and that he can do his recovery at home instead of the hospital ... but only time will tell.

One of the things I have noticed is that I am taking Jonathan's successes one day at a time.  I know some people would like to believe the current signs may be a sign that he is doing well (overall) - but my outlook is instead to look at each daily success as a success at this point in time.  My reading on other neuroblastoma patients do not paint a good picture and I cannot build up too much hope and feel it all crashing down later - because if that happens I don't know if I can handle it.  Instead I take it in baby steps.  I just say, "Lord, thanks for this good day, I hope tomorrow is even better" AND it also means one less day of pain and suffering for Jonathan.

As I end tonight's entry - Gabby and I have come to the realization that we are under stress (medically it's called depression and anxiety) and so we are going to see a psychologist - starting tomorrow.  The hope is that the physiologist will help us deal with these new changes in our lives and help us cope with it better.