Sixth induction phase - Day 24 - Hearing loss

Jonathan went for his audiology exam on Monday (yesterday).  Gabby called me after the exam to tell me that Jonathan's hearing loss in the upper frequencies have begun.  Some of the side effects include speech impediment so that words such as the letter s is not said or used anymore.  We now have to monitor how he speaks so we can take corrective action as soon as possible.

When I first heard the news - it hit me like a ton of bricks.  I don't know why.  Maybe it was because it was news that I didn't not expect.  I read all these stories about NB (neuroblastoma) patients and a lot of them having the cancer come back - that I'm wondering is this just a way to prolong someone's life that will be just full of suffering and pain?

Sixth induction phase - Day 19 - Going Home

Jonathan's WBC and ANC are finally increasing at a more rapid rate.  On Sunday to Tuesday his WBC was only increasing by 0.1 so that by Tuesday his white blood count (WBC) was at 0.4.  On Wednesday it 'shot' up to 0.7 and today it went up to 1.4!  The more significant factor was his ANC rate - which finally crossed the 500 minimum mark yesterday and was around 580.  Today it's over 1000 so Jonathan is more than ready to come home and continue his recovery.  This stay reminded me of the hospital stays we've had in the beginning of his cycle.  We've stayed an entire two weeks - so I can just imagine what two months would be like.

The plan is to have Jonathan rest up today / tomorrow and hopefully over the weekend we can go and do some fun filled activities.  Maybe Gabby and I will get some alone time as well : ) go on a date or two - because by the 8th August - we would have any alone time for some months to come : (.

Next week is going to be very busy for Gabby and Jonathan.  Almost every day they will be at the hospital as Jonathan gets tested / re-evaluated on the success of his treatment.  My wish or desire is that he will be free of disease or as they say in the NB (neuroblastoma world) - NED - no evidence of disease - put a part of me is not holding my breath.  His tests will include a bone scan, an MIBG scan, a CT scan and a bone marrow aspirate.  By the first week of August we'll either be very happy, or just happy depending on the results.

I'm giving blood for the first time

I finally give blood today!  I'm a first time donor and the experience was wonderful!  My original plan was to spend the night (which I did) and Gabby got a chance to go home.  It was her first 'real' break in a long time - maybe at least 4 to 5 days.  The plan was that I'll leave early in the morning and go across from the children's hospital to the blood donation center and donate blood.  Unfortunately I completely forgot about a 9 am test that Jonathan had to do so I thought my plans were going to be squashed.

Jonathan finished his tests at Nuclear Medicine around 10:30 am and by the time we came back to his room Gabby and Arielle had arrived from home.  So I started back thinking on whether I should still try and do the blood donation - which would have made me arrive even later to work.  So at 11:05 am I said, "what the hell" and was at the blood donation center.  The thing is - my wait time was more than I expected but by 12:15 pm I was finally hooked up and blood was flowing.  It took a little more than 4 minutes for my 1 pint of blood to come out and by 12:45 pm I was out of there.  I've also decided to register at the bone marrow registry so in about two weeks I'll go back in so they can take some blood for testing and identification.

So now I have to wait 60 days before I can donate blood again, i.e. to the community.  If I was doing a direct blood donation, i.e. for Jonathan, then I can donate every 4 to 7 days.  The unfortunate thing is that a direct blood donation costs money - in this case about $90 - whereas donating to the community does not.  It may be possible to get the insurance company to cover this cost - although I'm not sure - but I'll wait until tomorrow so I can find out my blood type.  If I'm O negative - like Jonathan - then I'll enquire about having the insurance company cover these costs.

So it's 1:48 pm and I'm on Bart / train on my way to work.  Super late today - but it just means my hours would shift appropriated - so I probably wouldn't be leaving until close to 10 pm today : (.  I know there are times I was either living close to work or won the lottery so I didn't have to work - today being on of those times.  I remember just a couple days ago I remarking to myself that I'm sure glad we didn't move in July.  I had this big drive to try and move closer to work and it would have happened during the month of July - since that is when our lease for our current apartment would have expired.  With all that has been happening in July - I don't see how we would have had the time to move - much less keep our sanity and have energy left over for ourselves.  So ... in the end ... I've renewed the lease for another year - and decide I'll revisit that question again next year.

Sixth induction phase - Day 17 - Blood Donations

I have a new rhythm now - with regards to going to work.  I drive up to Millbrae and then take Bart into the city.  Today I left from the hospital because by the time I was going to leave last night - it was already 10:45 pm so I know I'll hardly get any sleep.  So Jonathan had both parents staying in the room with him last night.

Jonathan was really cranky yesterday - it took a long time for him to warm up to me.  I guess he was feeling yucky but he wanted his mommy to do everything : (.  We had to force him to take his oral medication last night - two sets, force him to take his shot (G-CSF) and hold him down to clean his wee-wee - which has a minor infection.  After that we took him for a walk around the hospital.  He loves to stand on his pole (that holds his various IV bags and dispenser machines) and have us push him while he stands on the pole.  What was so nice was that on the way back - walk from the adult hospital to the children's hospital he wanted to go faster so Gabby ran down the corridor with him holding on to the pole.  I was teasing Gabby that she should run back : ) but I think she was too winded to make that trip a second time : ).

By the time we went back to the room - I decided to do some tape recording and after the first session (of about 3 minutes) and I played it back - Jonathan perked up and wanted to do some more.  He likes to tape his voice and then hear the playback which has him squealing in laughter and delight.  Apparently it's a game he enjoys although from my standpoint I'm doing it for memories : ).  I think that exercise helped him to relax a lot and I eventually feel asleep next to him on his bed.

This morning Jonathan platelets were at 15 while his WBC (white blood count) was at 0.4.  With his platelets being so low he started another platelet transfusion this morning.  So far Jonathan has had three blood transfusion and two platelet transfusion.  I've also never seen his WBC climb so slowly.  It's been increasing by 0.1 every day - which is the slowest increase ever.  They have also been increasing his dosage of antibiotics everyday - for the last couple of days - so it's definitely an interesting time for us.  It makes me worry more and more about his stem cell transplant - but there isn't much we can do right now.

Today is the first day that I made an attempt to donate blood!  Unfortunately the blood bank at Stanford does not open until 12 pm - by which time I'll already be in the office so I'll have to do it another day / time.  I've kept saying that I need to start giving blood - not necessarily for Jonathan - but just to give blood because of all the blood that Jonathan has received - I feel I need to do my part for society as well.  At one time we had explore doing a direct blood donation - in which Jonathan will get blood from one of us - assuming that we are O negative as well - but it costs $90 for each session and with the amount of blood that Jonathan has been consuming - that is way to much money.

So if all goes well - I should be giving blood tomorrow - since the blood bank opens earlier - around 7:30 am.  It's funny though, I want to donate blood but it must be donated to Stanford - not anywhere else, e.g. the American Red Cross, etc...  I don't know if it really matters but at least for the short term I'll try my best to give at Stanford.

So ... when are we going home?  Doesn't look like it's anytime soon.  If is counts continue to climb so slowly then it will probably take close to a week before it reaches above 5.5 - at least at the current rate it is going.  It means that the hospital will definitely become Gabby's home : (.  Over the next couple of days - this week until the end of next week - Jonathan will start his various tests to re-evaluate the tumor and cancer.  Hopefully the results will come back negative and that he is free of disease.  He'll be getting a CT scan, bone scan, MIBG scan and bone marrow aspirate.  A lot of tests and I hope all worthwhile but I'm reserving judgment until the week after next.

I know Gabby isn't too happy.  With the death of two patients over the course of a couple days - and a friend of ours - we met in the beginning of Jonathan's treatment cycle - whose son has a remission - does not make Gabby (nor I for that matter) to comfortable with the prospects.  I guess some people may say I'm being pessimistic but I think it is more of my being more realistic and maybe - in some small way - preparing my myself in case the inevitable happens.

Speaking with an uncle yesterday on the phone - I've come to realize that my next couple of journals will all be sad and heavy with emotions.  It's unfortunate but I can see how with someone going through a long term illness - if the inevitable happens it's a little bit easier to deal with death.

Sixth induction phase - Day 16 - Another weekend gone

Third weekend in a row without much rest!  It may sound like I'm complaining - and maybe I am a bit - but I miss my weekends!  At least I cannot blame it at the office : ).  This is also the first time we've had to experience (although remotely) the death of a patient late last week and another one on the way.  For some reasons the reactions are different for Gabby and I.  The first death had Gabby feeling 'depressed' and emotional - because although she knows that these thing do happen - she didn't want a 'in your face' kind of reminder.  I think she was also emotional because it happened during the time we had our BMT consult for Jonathan's stem cell transplant and we got a lot of details about what to expect, side effects, and short and long term risks.  For me my reaction is one of being more numb - is the best way I can put it.  There is a whole lot of feelings I would like to explore here but I'm afraid to explore it or talk to much about it.

Other than that - we are finally starting to see signs that Jonathan is perking up a bit.  He has now started to eat a little bit - popsicles, liquids and small amounts of food.  I'm afraid to see how much he ways but I'm glad that he is finally starting to put something into that little body of his.  Hopefully by today (for the earliest) or tomorrow we would get a better indicator as to whether his counts are starting to climb.  Yesterday his WBC went from 0.1 to 0.2 and his hemoglobin went from ~8.2 to ~8.5.  I'm optimistic but as had happen last week - his WBC went to 0.2 one day and then went back down to < 0.1.  With today being day 16 - it's totally plausible that his counts should finally be on their way up and that the healing would begin.

On another note - I think my 'indirect' bonding with Arielle is starting to work.  I'm trying to spend more time with her and she also sleeps in the bedroom with me.  On most occasions I try to be at home when she wakes up so she can see one of her parents instead of waking up to an empty room.  She seems to be mellowing out quite nicely and since Jonathan has not been a super grumpy mood and hence has not been pushing her away - it makes everything much easier to handle.  Again - I'm not looking forward to the stem cell transplant because that will be two months that Jonathan and one parent will be away from home.  I have not even begun to wrap my head around how we are going to make all that work!

My initial thinking is that for at least 3 weeks we don't have to worry because my folks would still be here with us.  The problem is what will we do for the next 6 weeks?  What makes this issue more challenging is that we have to limit the amount of contact between Jonathan and Arielle - because little kids tend to be Petri dishes of germs and this is one occasion we cannot take a chance of Jonathan 'catching' any cold or sickness.  I'm so worried about Jonathan catching a cold that I wonder how will we know if we are harboring anything?  One of the things the BMT team wants us to do is to come up with a third person who can stay with the kids in case Gabby or I get sick - because if either one of us get sick we will be 'refused' entry to be with Jonathan.  We have one or two candidates in mind - but it will be a big strain for either one.  I guess we just have to make sure we don't get sick - and the only consolation is that we'll still be in the 'summer' months so not as many germs will be 'flying' around as compared to the flu season in November / December.

The other big thing we need to plan for is Jonathan's schooling.  He will definitely be missing the 2005 / 2006 academic year - which also happens to be the year he would have gone into Kindergarten.  One thought is home schooling and the state has a provision / service where this can be provided.  Another thought is for us to hire someone directly (who we know) to provide the home schooling - since I'm not sure who or the quality the state will provide.  This is definitely the lesser of the two problems to worry about - but is a problem I'll have to start my homework on very soon.

Time table leading up to BMT

It's the end of the day at the office and I'm on the subway heading to the parking lot where I parked the car.  I will be spending the night with Jonathan as Gabby has to go to work tomorrow morning.  Gabby has dropped her hours to Saturday only and it has been going well for her.  The great thing about her job is that the environment and the people are very nice and it makes working there very pleasant and enjoyable.  It would have been nice if she could have increased her hours - but that's not possible - given all the things going on with Jonathan.  My real wish was that I could be the house-husband and I'll stay home with the kids - but that's not practical.

I remember feeling overwhelm when I went into the office today - I didn't know how I could continue working and being there for Jonathan.  At the end of the day - that feeling of being overwhelmed has subsided a bit.  Today we had a Blitz - an event in which the various teams chip in to help test / qa a particular feature and in some circumstances these events could be rewarding - having to work in pairs, learning new scenarios, finding issues so problems can be solved, etc...  The good thing is that my spirits are a bit lifted and I'm sure over the weekend it will only get better.  Sometimes I wonder if I was a manager and I had an employee like myself - what would I do?  How much allowances should I make?  How would I mitigate against the risks of my not being there or project dates slipping?  It's a tough question and I'm not sure to handle it - but I'm just glad I don't have to handle it.

As I think about Jonathan and seeing him this afternoon - I'm wondering - 'what can I do to make my son happy once he recovers from this round of sickness?'.  The problem is that we wouldn't have a long / huge amount of time.  Even if Jonathan comes out mid-next week from his fever & neutropenia (F&N) he'll still be recovering at home for a couple of days - so in reality we are only looking at about a week, maybe two - and then to be hit again - the question is - is the delay worth it - or should we just rush ahead?

On another note - a patient died on the ward yesterday.  It happened to be the room next to ours and it affected Gabby a lot.  Even when I was talking to the doctors' and I was asking what was the percentage for the number of patients that don't survive a stem cell transplant - also caused Gabby to cry.  The good thing was that the percentage is small - less than 5 percent (nationwide).  For some reason though - I'm not as reactionary as I used to be in the beginning of Jonathan's treatment.  I guess I have a wall of steel around me now? so it's harder to express my feelings or I'm more in control of my feelings?  Who knows? Doesn't really matter.  My immediate goal is to figure out how we'll through the next two months or so and then I'll worry about the future.

Sixth induction phase - Day 13 - WBC still not climbing

I'm completely exhausted!  Actually - I think both Gabby and I are exhausted!  I don't know how people can work and go through an event like - but I feel like I'm running on fumes now!  The worse thing is that we are coming up to a major milestone in which we will go though two months of 'hell' or put a softer way - two months of extreme pressure and stress.

Jonathan is still in the hospital - having gone in on Sunday for F&N (fever and neutropenia).  He still has fever (at various times throughout the day) and he is still very weak (at times).  From my conversation with Gabby this morning it seems that his platelets and hemoglobin levels are starting to drop again.  I'm not sure if he will be getting another platelet transfusion today - but if he does - he would have had two platelet transfusion and two blood transfusion in the space of a week.  Also, with his white blood count (WBC) still not climbing it means the healing cannot begin and his sores in his mouth, throat and digestive system will continue to be there and prevent him from eating.  Jonathan hasn't eaten for more than a week - and has only been getting IV fluids so he is still to lose weight again.  I'm hoping that his counts would start going up over the weekend but we're not sure.

To top it off - we had our consult with the BMT (bone marrow transplant) team yesterday (Thursday afternoon).  It's the BMT team that will be responsible for Jonathan's stem cell transplant.  Let me tell you - I am not looking forward to his stem cell transplant because if I think my son is suffering now - he will be suffering worse during this procedure.  On the day he is admitted he goes through 4 days of intense chemotherapy treatment to wipe out his bone marrow / immune system.  He is going on three anti-cancer drugs at levels extremely higher than he has ever experienced before - so all the potential side effects will be exacerbated because of these high levels.

The BMT attending (doctor in charge) also went through the different risks (both short and long term) and it's the long term risks which is scary.  At the end of this treatment Jonathan will probably be infertile, have a weaker heart and lungs and would have hearing loss at higher frequencies.  When I think about all of this - my mind goes back to the quality of life issues we've read that parents of cancer patients have had to face and I think it is something I need to keep in the back of my mind.  I'm not saying that we have to consider quality of life issues as yet - but I don't think I can have Jonathan go through this if he ever has a regression, i.e. the cancer comes back.  It's just too much pain and suffering.  As the parents of the neuroblastoma (NB) e-mail list puts it - when a NB patient dies they have earned their angel wings.  I find it is such a nice way to refer of death - gaining their angel wings.

I have a meeting with my boss this morning because I don't think I can work 5 days a weeks during the month of August.  I know for the first week that Jonathan is admitted - I want to spend the entire week with him just to be on top of things.  Gabby found I was too harsh or boarding on being rude when I was interacting with the BMT team yesterday but I've learnt that if you want anything done - you have to be willing to 'rock the boat'.  As my therapist puts it - if everything I've spoken at 2 decibels, then 4, then 6, and then 8 - and I only get a reaction at 8 decibels, then what is the point at speaking at below 8 decibels anymore?  The bad thing is that for doctor's that I've never met, who may be quite nice, pleasant and competent - they would not see the very nice and pleasant side of me - but given the stage we're in - I have no energy.

On the good side - if there ever was a good side - I've been spending more time with Arielle and being more considerate and caring about her feelings.  Over the last couple of weeks she has become a mommy's girl and didn't want to interact with daddy - probably because she doesn't see me because I'm either staying at the hospital or I leave home before she wakes up in the morning (to go to work) and reach in very late.  This morning as I was getting ready to go out the door (I decided to leave late), she started to cry and said she didn't want me to go!  So I turned back around and gave her a hug and kiss and distracted her with the TV - the ever loving Disney channel in the morning - and left again.  I know she is traumatized with the entire experience especially when Jonathan goes into the hospital.  She and Jonathan are so closed that it is unbelievable.  There is pain all around - I wonder when and if it is going to end.

I've come to realize that I'm not good at articulating my words in person anymore.  My journaling is by far way easier and allows me to be as descriptive and detailed as I want - which otherwise I wouldn't be able to do vocally.  Even interacting with my parents are somewhat limiting - because I'm either too tired or just don't want to talk about it.  I guess I'm kind of reverting back to the beginning stages where my journaling was a sense of comfort and I didn't like talking or repeating things.  Once tough too is that I suspect that Gabby needs me like I was a couple weeks ago - but I only have energy to ensure the medical team stays on top of things, energy to make the 'almighty' dollar and nothing else.  What we desperately need is a timeout - but now is not the time to get it.

Sixth induction phase - Day 11 - Blood levels continue to drop

Whoa - two journal entries back to back : ).  I wonder if I'll be able to keep this trend up.  It's easier to journal when I take the train into work as I have time to do stuff on the computer.  I've realized that it's hard to keep a consistent pattern to my work life - and when I don't keep to a pattern everything gets screwed up.  When I first went back out to work I was at negative sixteen (-16) days and I had to take two weeks unpaid leave to bring the balance up to a more reasonable amount.  Now I'm up to negative seven (-7) and climbing but now I'm going to try and keep to a pattern before I take more days off than I need to.

All in all - the company has been very accommodating - which is really good.  If it's one thing I don't have to worry about is my job.  Well ... I have to worry about getting my work done : ) but salesforce.com is a very stable company - I cannot say the same for my previous three companies so that takes a load off my shoulders.  The next two months are going to be interesting - it's crunch time for the projects I work on but I suspect that Jonathan's care is going to consume more time than I original catered for - but I figure I'll cross that bridge when I reach it.

Yesterday Jonathan got a blood transfusion because his hemoglobin counts were low.  When I got into the hospital around 9 pm he was just finishing up his transfusion.  I found out this morning that his hemoglobin levels dropped again - around 6.x and his platelets were at 7!  We've never seen his platelets drop so low - and the last time when he has the nose bleed and the one droplet of blood that came out his eye had his platelets in the teens!  So Jonathan got a platelet transfusion this morning and will be getting another blood transfusion.  We've never had the experience of getting so many blood transfusion back to back and it will be interesting to see how things develop during the day.

It's interesting though - on the one hand I'm worried - but on the other hand I'm numb so I'm not as reactionary as I used to be in the earlier stages of his treatment.  I remember one of the nurses teasing me last week Friday about how much I've changed : ).  I was teasing her right back and mentioned that I'm on drugs but she was saying that drugs alone would not have changed me the way I did : ).  I'm more easy going now - I'll admit - but I'll still make noise when things don't go the way it should - as evident during Jonathan's sixth round of chemotherapy treatment.

My fear is that if this is what we are going through now - what will it look like during the stem cell transplant?  I think Gabby is worried more about it that I am - or said a different way - she is stressing out more than I am (I think).  We are supposed to have a consult with the BMT team tomorrow (Thursday) and I just cannot wait to get all the info regarding the stem cell transplant procedure - what to expect, risks, etc...  Like I said - the next two months are going to be very interesting ...

Sixth induction phase - Day 10 - Fever & Neutropenia

Another weekend went down the toilet!  To make it worse it was the second weekend in a row (at least)!  The independence day weekend was spent at the hospital as Jonathan went through his sixth round of chemotherapy - while this weekend (just gone) was spent at the hospital because Jonathan was F&N (Fever and Neutropenia).  This means that Jonathan got a fever while his white blood count was at 0.1.  In this scenario - Jonathan's immune system is compromised and he is unable to fight infections on his own - so he's carefully monitored in the hospital while getting antibiotics, hydration, etc...

It started on Saturday afternoon - when Jonathan had a short nap.  He woke up feeling warm - but we weren't sure if that was because he had just woken up from a sleep or because the day was hot or a combination of the two.  We left home around 8 pm for a 2 1/2 hour drive to Fresno to see my brother.  The night before (Friday) we got quite a scare and thought that his wife was going into labor but by the next day we realized that the contractions were false.  We arrived in Fresno around 10:30 pm and probably went to bed around 12 am.  Around 3:30 am, Gabby woke me to tell me that Jonathan was whimpering and had a fever of 100.3.  It confirmed what I was hoping was not true - and that Jonathan had caught some sort of disease and his fever would only get worse.

For a quite who is immune suppressed - if his temperature reaches 101.3 then he has to go into the hospital (ER) immediately to start a course of antibiotics.  In our case - since we were at least 3 hours away from Stanford - we didn't want to take the chance and wait to see if his temperature would reach that high and then realize that we are too far away.  So by 4 am Sunday morning we were packed and ready for the drive back to San Jose.  Fortunately Gabby was all rearing to drive - because I was too sleepy to do any driving.  The unfortunate thing is that with my long commute to work - I normally use the weekends to rest up and that clearly didn't happen this weekend.

I remember as we were heading off to the highway to leave Fresno - I called in Jonathan's situation to the pediatric oncologist on call at Stanford and she was saying that if his temperature did indeed reach 101.3 then she would have had us checked into the hospital at Fresno and then have him transported to Stanford.  For some reason I didn't really want to do that because I didn't know anything about Fresno's hospital and I trust the care I will receive at Stanford.  The other thing to is that if the medical team at Fresno were unaccustomed to seeing oncology patients - then that might have complicated things and my blood pressure would have risen that night : ).

We finally reached home around 6 am - Gabby claims that she wasn't speeding - and I suspect that with the road being relatively empty she was able to make better time - and Jonathan's fever had dropped below 100.  We knew Jonathan had to go into ER but we were hoping that his condition would not get worse so that on Monday he could go to the day hospital instead of going through ER.  Unfortunately Stanford does not have a procedure where F&N oncology patients could get admitted directly to the ward and with the pediatric day hospital closed - our only recourse was to go through ER in which case he'll get transferred to the pediatric oncology ward.

With Jonathan continuing to be lethargic and not eating nor drinking and his temperature gradually rising - we decided that he had to go into the hospital.  So Gabby left home around 6 pm and went up to Stanford with Jonathan.  Things are going okay - we are waiting for his counts to start coming back up - which should be any day now - and then the healing could begin.  Jonathan hasn't been eating for the last four / five days - because the side effect of the chemotherapy treatment was to make his throat and track sore but hopefully by the end of the week he'll be eating again.

We are hoping to have an NG tube placed in him to make it easier to give him his medicine and also give him supplemental feedings to start 'fattening' him up - or at least make him less skinny : ).  I have never seen the NG tube placement before but I know it's a nasty / horrible process - one that Gabby cannot watch or help - but one which I have begged various doctors to do to me so I can experience it - but to no avail.  Hopefully the NG tube placement goes well and it will make it easier for us and for Jonathan - because then he wouldn't have to complain about the medicines tasting yucky.

We are slowing coming to a fork in the road - another major change in Jonathan's life / treatment.  On one hand I look forward to it - because it's amazing that he and us have gotten so far, especially with minor complications, but on the other hand I wouldn't have a baseline to compare it to so the experiences are going to be totally new.  I realize I don't like new - at least when it comes to Jonathan's treatment because I don't know what to expect and I don't know what is normal or not - in our weird view of the world.  We have a consult with the BMT (bone marrow transplant) team and they have already started their tests in preparation for his stem cell transplant.  It's going to be interesting and I'm really hoping that we are nearing the end of our journey (probably another 6 months again) and that life doesn't throw us a curve ball.  Right now the only curve ball I can accept is winning the lottery : ).

Sixth induction phase - Day 4

I've come to realize that I don't like change.  Sometimes change is good - but when I'm getting slammed with life events at 90 knots an hour - change is feature I can do without.  I still look back at some events that has happened in my life and wondered what was the lesson learnt?  Friends and family always say that when something significantly bad happens in your life - there is some lesson to be learnt.  For example, when I got laid off during the dot-com crash in 2001 - I'm sure there was a lesson.  Actually there was a couple - so I'm being unfairly critical - but it's frustrating to have the same event repeat or for things not to stabilize.

The same thing happened with Jonathan during his sixth - and hopefully last round of chemotherapy treatment.  The anti-cancer drugs he was receiving this time was the same drugs he received during this first, second and fourth rounds.  Nothing new, nothing strange - and was definitely the 'easier' of the sets of drugs to receive and recover - but we were in for a surprise this round!  When Jonathan went in for his pre-admin check-up - they discovered his blood pressure was very high - averaging around 160 over 100.

Earlier in the day I got a call from the clinic informing me that they were out of beds so we had the option of bring Jonathan in for labs and then coming back the next day (Friday) or doing everything on Friday.  Since Gabby and the kids were in the area - we decided to get the labs done so if a bed frees up in the night then Jonathan could get admitted.  Well - when they found out that Jonathan had high-blood pressure - they admitted him right away.  This time we went to a ward that we have never been too - 3 North.

The medical team wanted to get his blood pressure under control before starting chemo treatment - so Jonathan spent Thursday night and the entire day Friday being treated for high blood pressure.  Although his blood pressure was not under complete control - they decided to start the chemo treatment on Friday night and by 11 pm Jonathan started hydration with his chemo starting around 1 am on Saturday morning.

This weekend also happened to be the 4th of July weekend and I remember Gabby saying that we sure know how to pick our holiday weekends for Jonathan's treatment.  For some reason I wasn't too disappointed that it was a holiday weekend - because I was thinking that we'll be out by Monday (Independence Day) and that most of us would have been able to go and see the fireworks.  Little did I know that this would not come to pass.

The weekend went well - and this had been my longest stay in the hospital.  I stayed Thursday night - went to work on Friday (late) morning and then stayed from Friday night until Tuesday morning.  For the most part it was a good stay.  I didn't go crazy : ) except by Monday afternoon I was getting tired and needed a break.  I think the 'bad' thing I do when I'm staying at the hospital is that I never leave to go outside.  I stay by Jonathan's side all the time and even if we go to the cafeteria - Jonathan goes with me.  So when I do go outside - I feel like - wow - outside looks so different.

The stay at the hospital was interesting.  We started Friday night with my getting assertive with the resident doctor.  Apparently the orders that were written for Jonathan got misplaced and so the set of drugs he normally receives for handling nausea and the other side-effects of chemo were severely reduced.  Of course when a parent tells a doctor that the patient (Jonathan) should get these drugs - and the drugs are not listed in the orders - I am met with some disbelieve.  Unfortunately the resident was new, and I was tired, so I had limited patience on being nice this time.  Plus, I've noticed that if you are too nice - then they want to take advantage of you - so it's better to bring the heat on quickly so they can respond faster.  By Saturday morning both issues were resolve and we were on our way to an uneventful weekend.

The nice thing about this weekend stay is that Stanford had a fireworks display on Sunday night so we were allowed to go to the roof and watch the display.  I remember when I first found out that there was going to be a fireworks display - it was from one of the security guards.  The only problem was that the code patients normally used to go up to the roof was not working - because it was after daylight hours - and nobody else on the ward new about any fireworks display.  Thankfully I was persistent and having checked my information multiple times I finally convinced one of the nurses to take us up.  While we were hanging out on the roof we met another security guard who confirmed that there was going to be fireworks - so this was one occasion I was glad I was very persistent : ).

We all enjoyed it - both Gabby and Arielle was there - although it was not as spectacular as a real 4th of July event - it was still worthwhile to see.  Initially, Arielle was afraid of the fireworks but she quickly calmed down and enjoyed it.  For the first time ever - Jonathan enjoyed fireworks.  I guess since we were not close to the fireworks to hear the noise of the fireworks going off - it was easier for him to handle.

Jonathan has finished his sixth round of chemo on Tuesday morning - around 1 am and he is staying an extra day or two while the hospital sorts out getting blood pressure equipment (with the insurance company) so we can check his blood pressure at home.  We suspect that he'll probably go home today (Wednesday) and will continue to be on blood pressure medicine for the a while.  I'm hoping that when the rest of his results come in by the end of the week - we'll have a better idea as to the cause - because right now the medical team does not know what is cause of the high blood pressure.  At least - if we don't find the cause - that the problem goes away as quickly as it came.