Jonathan and Gabby enjoying a moment of some art and craft. This was one of the more terrible days for Jonathan but occassionally there are some small periods of time when he is not as grumpy and not feeling as yucky and is able to pay attention - if not take part in some sort of activity.
It's a week to the day that we have been in the hospital. I'm amazed that after only one week - we could feel so drained, so tired, so exhausted. I'm shudder to think what it would be like after four to six weeks - when Jonathan has his stem cell transplant in the next 6 or so odd months. I don't know how other parents do it, much less single parent families, but I have a profound respect for those parents. My only wish is that we could have the strength to continue on as other families before us have done and continue to do.
I've been thinking about the how this experience affects my family life. I had a conversation with someone yesterday and I remember saying that Gabby and I have not slept (together) in the same bed for almost 1.5 weeks! I know this does not seem significant - but with all that is going on - we have been apart during this entire experience - since one of us have to be by Jonathan's bedside - there is no way for us to spend the night together.
One of the things that they encourage at Stanford is for the parents to be actively involved in their child's care. One of the reasons is that this is a long road - his active care lasting about 12 months - and it is important that each procedure be made as comfortable as possible. For example, Jonathan does not like to take his medication orally - and three times during his stay we have had to work with the nurses to force him to take it. Forcing him is quite traumatic and involves holding him down - arms, legs and head, and (if necessary) plugging his nose to force him to swallow. The problem with this strategy is that we cannot continue to force him to take oral medicine for the next 12 months - so the hospital staff works with us to try and encourage him to take it willingly.
Another example is that Jonathan requires a shot every day - even when he is home. Every day! Could you believe it? This shot is for the drug G-CSF to help promote the re-building of his immune system that was partial destroyed during chemotherapy. I don't even know how we will tackle this issue of having him not fuss to get his shot at home - but the first thing I did on finding out that he needs this shot - is to request a specialist from child life services to come and talk to us. Child life services are experts on helping kids (and teaching parents how to help kids) become more at ease with the various procedures and they do this using a variety of methods - including medical play using dolls, etc...
Besides giving Jonathan the shot every day - there are a whole host of other things we have to do while we are at home. His catheter (central line that goes into his chest) has to be flushed every day. His catheter has to 'lines' so both lines must be flushed. Every four days we have to change a portion of the catheter and once a week we have to change the patch protecting the entry of the catheter into his body. The challenging thing with all of this is that there are a lot of procedures we have to follow to make sure we don't get any portion of his catheter infected with germs, etc...
The good thing is that I got my first practice run this afternoon ... and although I thought I knew most of it ... it was amazing how many additional steps I missed out to ensure I maintain a clean integrity with his catheter. I was kidding with the nurse that soon I'll be a nurse myself - the amount of things we have to do - giving shots, giving medicines, injecting heparin, cleaning - wow! She joking replied that we are like nurses - just without the pay (smile).
One of the things I've noticed that has kept me going throughout all of this is my humor. I'm not saying my jokes are always funny - but it's amazing how the nurses and staff here are so accommodating. I cannot imagine how many times I have had to ask the same question over and over. I've resorted to writing things down - because I don't trust my mind to remember things correctly. The good thing is that I've been told that this is all normal. The frightening thing is that when you think things are getting better - or you think you have digested the majority of the information - there is always more information.
I remember on Day 0 (Sunday) thinking that Jonathan was going very well and that things seem to be proceeding far better than I envisioned. But I have to keep reminding myself that we have to celebrate for today and not for tomorrow or for all time.
On Day 1 (today) of his first induction cycle - Jonathan got his second rounds of both sets of anti-cancer drugs - cyclophosphamide and the combination of vincristine and doxorubicin. Just like the previous night - Jonathan slept through the night - and so did I (thank God). In the morning he threw up three times but the two anti-nausea drugs eventually kicked-in and got everything under control. He also had two bouts of fever - one in the afternoon and another later this evening. Initially I was very concern because I know he already has his bacterial infection that we have to treat once he is finished taking the anti-cancer drugs but with the fever I was wondering if he was getting an infection - especially since the anti-cancer drugs reduces his ability to fight infections.
The thought from the medical team is that the fever might be due to the anti-cancer drugs - especially since it is a low grade fever - but he'll be monitored so if his vitals change, e.g. higher fevers, more lethargic, etc... Tonight is Day 2 and he has one more set of anti-cancer drugs to get - vincristine and doxorubicin. I'm hoping tomorrow is a better day for him because cyclophosphamide is the nastier of the two sets and he is finished with that for now. We are also trying to get him off of the pain medication as well. His dosage was reduced by half tonight, and depending on how it goes, we'll try reducing it even more tomorrow. The hope is that Jonathan might be released either Wednesday or Thursday - but it all depends on whether he starts eating and drinking on his own, and reducing his pain medication to a much smaller amount. My hope is that the tumor has started to shrink somewhat and thus the amount of pain caused by the tumors would be reduced.
Jonathan finally started his chemotherapy treatment last night, i.e. Saturday night. I was so anxious for his treatment to start, so anxious for his healing to start, that it was sort of a relief when I saw them attached two bags containing the different anti-cancer drugs (cyclophosphamide in one bag, and vincristine and doxorubicin in another bag) to his central line.
What was good about last night was that the entire family was here, i.e. Gabby, Arielle and myself and Jonathan's grand-father and grand-mother. The cool thing was that Jonathan's grand-father was playing with him - with his Play-Doh - and Jonathan was having lots of fun. This means that although he was getting his anti-cancer drugs - he was being distracted at the same time and concentrating on something fun and exciting.
Prior to his starting his chemotherapy treatment - they moved us to an isolation room. Jonathan had develop a bacteria in his stool (poop) and to avoid infecting other patients, etc., they moved us to a single room. The not so good thing about this is that Jonathan is now confined to his room - so he cannot go out to the play room on the 3rd floor, but the good thing is that we have our own room and I get a taste of what being in isolation is like - for when he has his stem cell transplant. At least I can get rid of the notion of Jonathan being in a bubble without any physical contact.
Since starting his chemotherapy treatment last night - Jonathan had a very good night. He slept for the entire night - with us (the nurse and I) waking him up either to change his diaper or to get him to pee pee. The thing with chemo is that as it enters the body, you have to force it out as well - so he is well hydrated via his IV so that his body could flush out the chemo. Thus he is constantly monitored to make sure he is pee peeing regularly.
I remember waking up this morning and thinking that Jonathan is reacting very good to the chemotherapy. We were told that some kids react badly to it and have a lot of vomiting, feeling very sick and so forth. Up to 10 am on Sunday morning - Jonathan has been sleeping, pee peeing frequently (the minimum requirement of every 2 hours), and no vomiting. I remember the nurse and I trying to give him his antibiotics this morning around 10:15 am and Jonathan having his first episode of throwing up. At that time I was thinking the throwing up was due to his throwing a fit - because he didn't want to take his medicine - but the nurse was telling me it was due to the chemo.
Initially I didn't believe the nurse but now I'm more likely to believe her because he just had his second bout of throwing up. Luckily I was there in the room - because he was lying down on the bed and vomiting - so I was able to have him sit up so he could empty his mouth. He is fine now and back to sleep. He has been sleeping most of the time - and the nurse and doctors tell me it's probably because of the chemo making him not feel like himself. I remember asking him earlier how he was feeling - and he said something I thought very strange. He said, "I don't know how I feel". I know I don't know what it feels like - but I'm sure it's equally confusing for him as well.
Tonight he has another round of the 'nasty' anti-cancer drug - cyclophosphamide - again. The good thing is that he also gets additional medicine to help control the vomiting and protect his kidneys. But you know what the really good thing is? My son's treatment has started and now the healing could begin.
It's 11:45 pm on Friday 28th January and my son is having a wonderful sleep. I should be sleeping too, and I was, for about 45 minutes, but got up and felt restless. The last three days have been really good ... which each day getting better and better. Today (Friday) Jonathan had a ton of people come over to see him ... and it was really great! He had three moms and their children come over and Gabby had four colleagues from the office as well. I think when Jonathan has visitors his entire mood changes and he enjoys it so much and makes him much happier to be getting all this attention. This is a good thing - because when you think about it - he does not have any control of what is happening in his life and it's interesting to see how he copes and adjusts to it.
I would like to think that this is a sign of things to come ... or maybe I was panicking earlier in the week ... who knows? We've also learnt more about the process and my mind is a bit more at easy. For the last stages of his treatment ... we were very concern and afraid but we have a better understanding and the outlook is not as scary as we thought. One of the things I've learnt is to take things one day at a time - I fondly remember my aunt telling me this at previous moments in my life - and I'm taking my celebrations one at a time as well.
In all of this I'm still divided into figuring out - is it the hand of God or is it just good science and how things progress or is it a combination of the two. One thing I've learnt is that our love and care for Jonathan is an expression of our love for God - and although I was stressing not having a formal prayer life - I'm more comfortable with my efforts thus far. Of course - I do feel the motivation to formalize my prayer life a bit more and in time that may happen.
One of the things that amazes me is the overwhelming support we have gotten for Jonathan. There are a lot of people praying for Jonathan and for us. One of the things I've observed last week is that each person I've contacted is a leader within their own church community and that just catapulted the amount of people that is praying for my son. My mom, Gabby's parents, my cousin in San Francisco, my aunts in Miami, my uncle in Wisconsin, Jonathan's pre-K teacher, and the list goes on and on. I suspect there are more people praying for Jonathan than I realize ... or at least I would like to think so. Now that things are not as stressful as earlier in the week ... I have more time to reflect on this ... and the huge effort being put into saving my son's life ... both physically and spiritually.
A couple things touched my heart this week. A friend of mine has e-mailed me telling me that my son's situation has touched her heart and caused her to pray - something she doesn't really do - and that she has asked her parents to pray for him too. My colleagues at the office are all rallying around and lending support as well. I've heard from a cousin I have not heard in a long time and it really touches me that she has the strength to re-make contact. The doctors' and nurses have been excellent with his care and things seem alright with the world (at least at this moment in time).
This afternoon we met with the doctor (Oncologist) in charge of Jonathan's care to review the consent form and any questions we may have on his treatment plan. I remember when I first sat down to read this consent form, this document of 32 pages! It was a painful experience ... and the first time I've ever had an anxiety attack. I will end this entry by including some information from the consent form to give others an idea as to what is involved in Jonathan's treatment - please excuse if the extracts are disjointed but I'll try to make it as succinct as possible.
The standard treatment for neuroblastoma consists of anti-cancer drugs (chemotherapy), surgery, and radiation therapy. Patients with high-risk neuroblastoma (which means Jonathan) often respond to standard treatment at first, but there is a high risk that the cancer will come back. On this study, patients will receive chemotherapy, surgery, radiation therapy and stem cell transplant.
Stem cells are the cells that create new blood cells, such as red blood cells, white blood cells, and platelets.
Methods for giving drugs: various methods will be used to give drugs to you. Some drugs will be given by tablet through the mouth. Other drugs will be given using a needle inserted into a vein.
Central Line: For drugs to be given by vein, your doctor will likely recommend that you have a central venous line placed. A central line is a special type of tubing inserted into a large vein in the chest by a surgeon during a short operation. You would be anesthetized for this procedure and receive pain medication afterwards to keep you comfortable. The central line is sued to administered chemotherapy drugs and to withdraw small amounts of blood for testing during treatment.
Induction Phase: All patients will begin treatment with the induction phase of chemotherapy, which is divided into six 3-week cycles. There are two different drug combinations in use during the six cycles. Cycles 1, 2, 4, and 6 use the anti-cancer drugs vincristine, cyclophosphamide, and doxorubicin. Additional drugs given during these cycles are MESNA and G-CSF. MESNA is given to help protect the bladder from potential damaging effects of cyclophosphamide. G-CSF stimulates the production of white blood cells (infection fighting cells) and will help your body recover from treatment. Cycle 3 and 5 use the anti-cancer drugs etoposide and cisplatin, and the drug G-CSF.
Stem Cell Harvest: After the second cycle of induction is completed, your stem cells will be collected using a procedure called apheresis. A special catheter will be placed into a large vein in your chest (which was done on Monday). One side of the catheter will collect circulating blood into a machine that filters out the stem cells. The filtered blood will be returned to your body through the other side of the catheter. Each apheresis procedure takes about 4-6 hours. The procedure may need to be done several times to collect a sufficient number of stem cells.
Your stem cells will only be used for later transplantation if they are free of detectable tumor cells. If tumor cells are detected, another stem cell collection will need to be done following the next cycle of chemotherapy (cycle #3). the physician may decide that the second collection of stem cells should come from the bone marrow instead of the peripheral blood. This alternative will be discussed in more detail if it pertains to you.
The second collection of stem cells will also be tested for detectable tumor cells. If detectable tumor cells are still found, you will no longer be eligible for stem cell transplantation and will be reassigned to receive maintenance chemotherapy after induction and surgery.
Surgery: After the fifth cycle of induction, you will have surgery to remove as much remaining tumor as possible.
Consolidation Chemotherapy and Stem Cell Transplant: If you are to undergo stem cell transplant, you will begin consolidation chemotherapy after the sixth cycle of induction therapy. The consolidation phase of therapy is one course of treatment with high doses of three anti-cancer drugs carboplatin, etoposide, and melphalan. After four days of being given these anti-cancer drugs, you will have a two-day rest period during which no drugs are given. On the third day following the completion of consolidation, you stored stem cells will be given to you through a catheter, like a transfusion. Four hours after the stem cell transplant is completed, you will again be given daily G-CSF injections. You will continue to receive G-CSF for 2-3 weeks, or until blood tests show that the cell count in your blood is adequate.
During this phase of therapy, your must be hospitalized in an isolation room in order to protect against infection. You will also require blood transfusions and feeding through a tube. It may take four or more weeks for the transplanted stem cells to grown and begin making enough white blood cells so that you can come out of the isolation room. When you are medically stable, you will be discharged from the hospital. You may still need blood transfusions and feeding through a tube for another one to two months.
Maintenance Chemotherapy: If you are found to be ineligible to undergo consolidation chemotherapy and stem cell transplantation, you will be given maintenance chemotherapy instead. Maintenance chemotherapy consists of three cycles that last between 3 and 4 weeks each. During each cycle, the anti-cancer drugs topotecan and cyclophosphamide are given along with the drugs MESNA and G-CSF.
Radiation Therapy: Approximately one month following transplant, or at the completion of Maintenance (if you do not have a transplant), radiation therapy may be given. The specific radiation therapy indicated for you will be discussed with you at that time. If radiation therapy is required, it will be given once a day for a total of 12 days.
13-Cis-Retinoic Acid Therapy: Approximately 2 months following stem cell transplant or immediately after maintenance chemotherapy and radiation therapy, you will receive six monthly treatments with 13-cis-retinoic acid. 13-cis-retinoic acid is a drug closely related to vitamin A and has been shown to help stop the multiplication of any remaining neuroblastoma cells in your body. You will take this drug 2 times a day by mouth for 14 days and then not take it for the following 14 days. This 28-day cycle will be repeated 6 times.
Wow! I feel like it has been a long time since I've last journaled. In actual fact it's almost two days and it's amazing what can happen in two days! I remember when I was writing my last entry - Jonathan (and I) were recovering from a rough and traumatic night - but would you believe things have turned completely around! The blood transfusion seemed to be a success, coupled with the pain medication, so much so that Jonathan was off the bed and in a wheelchair more and more on Wednesday. He got a chance to visit the 'big' play room and was so taken with all the toys and various art and craft projects that it's an excellent incentive for him. On Wednesday evening he also started walking on his own. Although I was not there to witness the actual walk - I met him in the hospital corridor. It was so great to see him up and about - it's absolutely amazing and such a relief to see him bouncing back.
Wednesday night was the first night Gabby stayed at the hospital. Luckily for her - Jonathan was on his 'road to recovery' - so both Jonathan and Gabby got a chance to rest. Although the original plan was for me to spend Wednesday night at the hospital - Jonathan insisted that he wanted his mommy to spend the night with him. We are guessing it could be a combination of two reasons - he associates having pain with daddy - since I was there for the first two nights - or he doesn't like to see me panicking or stressing out? He even requested that Gabby stay tonight - but I told him it was on the condition that his daddy could spend the night tomorrow, i.e. Friday night.
I've come to realize that we really need to alternate spending the night with him - since I'm starting to see the toll it takes out of me ... of us. My first night home was good. I slept eight hours - woke up once after six hours - and I felt I could have slept for another 4 hours. I remember reading the 'consent for treatment' form this morning and after four pages I finally understood what an anxiety attack feels like. Our 'consent for treatment' document is 32 pages long and describes every single thing in detail. How depressing! In actually fact - some of the reading wasn't as depressing as others. My impression of his steam cell transplant may have been way off compared to reality and so my mind was a bit more at ease.
Wednesday was also the day that Jonathan moved to the Oncology ward for treating cancer (pediatric) patients. The style of the rooms are still the same - so two patients share a room. I remember on his first night in his new room - seeing his roommate - an actual cancer patient who (apparently) has been getting treatment for quite a while. It was quite a shock. She didn't have any hair on her head. It was like getting a splash of cold water on your face. And then I realized - wait - my son is a cancer patient as well. I had so many questions ... but no one to answer them ... but soon we'll be going though the same process as well.
I've decided that I'm going to shave off the hair on my head as well ... to help Jonathan though this difficult time ... to show some solidarity with him. After talking to the nurses today - the plan is to wait until his hair starts to fall off and then shave my own. I'll tell him that I found his hair style is so cool ... so awesome ... that I wanted to have one just like his own! Hopefully he accepts that explanation and it helps him to adjust to the changes.
All in all - I'm really glad to see my son almost to his normal state. He still has pains (occasionally) in his stomach and he complains about the 'cuts' in his body where they inserted the various instruments for the laparoscopy ... but at least he can walk around, talk and play. It's also interesting walking around with him - because he is always on an IV and so wherever he goes - we have a pole with his saline solution and dispensing machine to wheel around. One of his pain medication is on another machine that automatically dispenses it into his IV every hour - so we actually wheel around two small pieces of machinery on a pole with his saline solution. The interesting thing is that Gabby quick mastered the art of pushing his wheel chair and the pole ... at the same time. I'm getting better at it as well - and tonight was the first time I did it by myself with relative ease.
I'm not looking forward to tomorrow (Friday) since Jonathan should be starting his chemotherapy in the afternoon. It will be a rough weekend and I know that he will be in a lot of pain. They say the first two treatments are the hardest ... but at least we are wiser and more knowledgeable with treating with his pain.
To everyone who are praying for Jonathan and the rest of his family - thanks so much for your prayers - and please continue praying for Jonathan. Here are some specific things we would like you to pray for:
It's around 7 am on Wednesday 26th January - and I've had the worse possible 12 hours that I could ever remember. The strange thing is that I survived it and I know what I went though last night is nothing compared to more nights to come. I'm tired as can be but with all the drama - I want to make sure I write this down - because maybe it may help me in the future.
Yesterday they started Jonathan on a new pain medicine - so they replaced Morphine with Dilaudid (spelling?). His first dose was around 4:30 pm and the doctor's orders were for him to receive it every two hours. Well this new pain medicine worked very well. Unfortunately, and not due to the pain medicine, by his third dose, around 8:30 pm, his vital signs changed. His heart rate was too high, his oxygen rate was too low, and his respiratory rate was too high. The nurse started to give him oxygen but Jonathan didn't want the mask on his face so we held it close.
The pediatric doctor on call came to check out Jonathan. His vital signs are still fluctuating - not alarmingly - but enough that it warranted some concern. An x-ray was called so a portable x-ray machine was brought in so that it could be done on his bed. During all of this Jonathan is complaining of pain in his stomach and doesn't move very much - so the possibility of bed sores could eventually occur. There was a moment of time I was alone with Jonathan and I'm observing him and I realize that something doesn't feel right. I start to panic and I breakdown (not literally) and start to cry. The nurse comes in and she says that he needs to take his dose of Tylenol but Jonathan spat out the last dose around 3:15 pm because he doesn't like the taste - and unlike the pain medicine which is given via the IV - the Tylenol is given orally.
Jonathan did not want to take the Tylenol so the other option was to get another nurse to force him to drink it. I'm pleading with Jonathan and begging him to take it. During that course I start crying again and I turn to Jonathan and beg him. No dice. The nurse leaves to get another nurse. When she is gone I ask Jonathan again - and he agrees. I give him the Tylenol and when the nurse returns I give her the vial. She looks at it and sees that it is empty.
The x-rays come back and he has some air pockets in his lungs ... and they need to take another x-ray. Jonathan will need to lie on his side and he is in terrible pain as they move him about. They are concern because Jonathan is not breathing deeply and are worried that there could be fluid in his lungs or some other problem. My next strategy for the next hour or so was to beg Jonathan to try and sit up. I have no idea when - but during the course of the night - with the bed already in a semi-upright position - he leans forward and that becomes the first time he moves.
Around 1 am - I'm very close to losing it (not insane) but I'm very, very worried. My new strategy was to convince him to get off the bed. Although this was unlikely - I wanted to get him more active so he could take deeper breaths and start using his lungs much more. Amazingly he agreed for me to pick him up if I could take him to see the toy room. I lifted up my son and he started to cough. He had a couple of deep, long coughs and this was a good thing because it means he was having a good exchange of air in his lungs.
I'm holding Jonathan by the bedside since his IV and monitoring system is not mobile and I wait for the nurse to change his bed sheets. At that point in time I remember thinking to myself - wow - three things getting accomplished - his moving, his exchange of air, and the bed sheets being changed. The nurse finished changing his bed and puts his IV on a mobile pole and we walk with Jonathan in my arms to the toy room. We put him in a wheel chair and I ask him what toy he wants. Jonathan says, "Daddy, you choose one". I take out a puzzle and he says, "not that one". I eventually find one that he wants.
While I am building the toy for Jonathan - it's one of those connectix type toys - the pediatric doctor on call comes in to talk to me. Jonathan's hemoglobin count or level is borderline and they recommend that he gets some blood to help with his intact of oxygen. I have plenty of questions but no idea what is the right decision. I give them the go ahead and Jonathan and I went back to his room. He falls asleep around 2:30 am and I do the same shortly after. Around 4:30 am I wake up and realize that his blood transfusion has already started. I'm so tired ... it's unbelievable.
Switching back to the present - he is doing better now. His pain is under control - except for some tumor pain around his stomach - he had some of his energy drink - and he is somewhat mobile. I've decided I'm going to wait until I've seen at least 24 hours of progress before I start to relax. It's going to be a long week.
It's 7:45 pm and all is well in the world. Well ... not literally but I just felt like saying that phrase. At least I'm in a much better mood than I was in last night. It was both a rough and a learning experience. Monday night and most of Tuesday was a very stressful day for Jonathan. We didn't quite get his pain under the right control and he kept waking up every two hours - sometimes staying awake for a long time because of pains to his stomach, ribs or legs. It was starting to alarm me because by 8 am this morning I realized that Jonathan hadn't eaten or drank anything for over two days. The good thing was that he was on drips - so at least he was getting hydrated ... but I wanted him to start consuming some foods - even if it was just Ensure.
By 8 am I had a discussion with the nurse and we decided to give him morphine every two hours. By 10 am the nurse decided to give him a dose of morphine and a dose of Tylenol - keeping in mind everything was according to the doctor's orders so we were not making things up along the way - even if it sounds like that. It was around that time I got a brilliant idea that I could use a syringe to wet his lips with juice and then put some in his mouth. You see - they had to put a tube down his throat during the surgery and that made his throat very, very sore. So sore and coupled with his pain management not being that good - it was hurting him a lot to just swallow saliva. I knew that his throat was very dry and I knew that he had to get something down his throat - but he was afraid - especially with the pain he felt last night.
So I wet his lips with the syringe and he licked it off. I thought - this is great, let me continue moving forward. So then I squirted a little into his mouth. He swallowed it and didn't complain much. I then emptied the entire syringe into his mouth and I asked him if he would like to drink it out of straw. He said yes. I thought - halleluiah! It's amazing how the simple, little things seem like great accomplishments these days.
At 12 pm his lunch arrived and I wanted to see if I could get him to eat something. I looked in the tray - and guess what - it was a hamburger! And would you believe prior to his surgery on Monday afternoon - Jonathan was asking for a hamburger! I thought this could not get any better. I go over to Jonathan and put the tray on his bed. I took off the cover and I say to him, "look Jonathan, it's hamburgers, do you want some?" Would you believe he said yes! I just couldn't believe it. He ate 1/4 of a burger and drank 1/8 of his milk. I know this does not sound like much - but it was great news to me.
Other than my experience with coaxing my son to eat ... it was quite interesting to look at his bandages. I spent some time cleaning parts of his body. He had something on his body that looked red but came off as yellowish / brown and it was quite an experience just wiping him down - very gently, very slowly, very carefully.
I look at my son now and he is in a deep sleep. He was talking to himself earlier ... a sign ... I think ... that he is in a good sleep ... that his brain is trying to sort things out. I should be getting to bed too - since I only got a couple hours rest that was very broken. I've been waking up whenever he cried out in pain - and I'll rush over to his bed. Sometimes I wish I could sleep standing up by his bedside - to tell you know tired I was. I am hopeful we have his pain management under control now ... but I'm still worried. The worse has not come as yet and I don't know if I have the strength.
While I was taking Arielle for a walk earlier in the afternoon - since Gabby was reading Jonathan a story - I heard that the Oncologist in charge of Jonathan's care came by. She confirmed that the biopsy of his bone marrow came back positive for cancer. Jonathan has cancer in his bone marrow. I saw that Gabby was crying or at least close to tears. For some reason I'm strangely calm ... but I know the reality will slowly hit me sometime soon.
As I end this journal entry - I just want to thank all our friends, relatives, and people I don't know - for sharing in our experience and praying for Jonathan and for us. For those of you that have sent an e-mail of encouragement to me and have not received a response - my sincerest apologies. I'm not sure I will be able to respond to each and every one of you ... but be aware that I have read every e-mail and I am grateful for the show of support and prayers. I look back on the day and wonder, "where did all the time go?", "what did I accomplish today" and I realize that the day is short, the hours numbered and the minutes lost ... but at least I spent the day with my son.
For those of you that have asked, "what can I do to help", I want to thank you so much for offering. I am sure we will have a lot of needs as the days, weeks and months go by, but here are two requests.
1. For those of you that do a lot of traveling and would consider donating some of your (AAdvantage) miles - to make it easier for Gabby and I to fly our parents up to help us out - that will be great.
2. For those of you that will like to make a financial contribution please click on the PayPal link below.
3. Continue praying for Jonathan and for all of us. As I've come to realize, our journey has now begun but thank God that the journey has started on the right 'foot'.
It's 4:30 am on Tuesday 25th January and I'm in the hospital with Jonathan. I forgot what it is like being in a hospital ... at least compared to my two experiences for the births of Jonathan and Arielle. Jonathan and I are in a shared suite - which means we are sharing the room with one other patient - one other family. It's a big room with curtains to section off each area and each area has its own TV, phone, sofa and equipment but we share the same bathroom. As I write this - I hear the next patient crying - a baby - but unfortunately the parents do not stay behind. I don't know the reason why and I don't hold anything against them but I'm just happy to be able to stay with my son. Gabby and I are hoping that one of us could always be with him - both in the day and the night. We don't want him to spend a moment at the hospital by himself.
I've just put on a movie for him - Stuart Little 2 - to try and keep his mind off of things. Jonathan is watching it and shaking his right leg constantly. I don't know why he does it - but his right arm is always up over his head tucked under the pillow. They had just given him his pain medication - morphine - and he seems nice and settled - although a bit stressed.
The previous day's events were interesting. Jonathan went in for surgery - for his two biopsies around 1:30 pm. His first biopsy was to remove a small piece of the tumor and that 'operation' lasted around 2 1/2 hours. Fortunately they didn't have to cut but used laparoscopy, that is, using a camera and other tools to get to the tumor. This means that Jonathan now has three or four small holes in his body - one by his belly button and two or three other holes distributed on his stomach area. His second biopsy was to remove some bone marrow and piece of the bone and that was done on either side of his hip - so again he has two small holes on either side of him as well. He also has a main line installed - so he has a hole just above his right 'nipple' and is a type of (permanent) IV line that connects directly to one of his main veins. This means he shouldn't not have to get 'stick' as regularly as before since they now have a way to inject medicine and administered treatment.
It was strange seeing Jonathan after the operation. He finished just after 5 pm and was still sleeping when we went in. He looked so stressed - the markings from the tape or masks they put over his face to help him breathe were still present when we went in. I was so happy to hear that he went through the surgery with no problems but it was difficult to know my son is going through so much pain ... and the difficult thing is that things have now started ... I shudder to think about his other ... more serious procedures.
Jonathan was moved up from same day surgery recover room to his more (permanent) room between 6:30 pm and 7:30 pm. I could clearly see that he was in some pain a little later and they administered a dose of morphine around 8 pm. Around 9 pm his pains started back - primarily by his throat and his 'wee wee' since tubes were inserted in both places. While attempting to help ease his pain - he got in more pain - I have no idea why - and I started to panic. I kept paging our nurse and no nurse was coming and for those that know me ... I started to get anxious (for want of a better word). Fortunately a nurse came about 15 minutes later and he got another does of morphine. Coincidental, our surgeon arrived, and we had a discussion around pain management and my pleading that they stay on top of things.
Of course they were staying on top of things - but you know how parents could be - or at least this father - I wanted my son to be as comfortable as he could be - but after hearing the side effects of morphine - I was a bit more calm. The good thing so far is that the length of time between doses for the morphine is gradually increasing - from 1 hour, to three hours to four hours ... at least that is a bit of a relief. I just wished he could get more sleep - I know he has hardly gotten any / much sleep - much less for me - but I know the way for him to heal is to sleep and allow his body to rest.
At least I have access to the internet from the hospital - using my dial-up account and I'm hoping to start getting some research done on cancer, Neuroblastoma and treatments available. It's great to hear from all my friends and family ... the show of support. I now have to start worrying about the future ... his treatment ... how I can be there for him ... and how to manage my job and time off. For those of you praying for Jonathan and for us ... pray that there is a good resolution for me as well so I can continue to be there for my son.
It's 2:15 pm on Monday 24th of January and my son is in surgery to have his biopsies done. Jonathan went in at 1:30 pm and they estimate that it will take about two hours to complete. For Jonathan they will be taking two biopsies, one of the tumor and the other of his bone and bone marrow on both sides of his hips. Although this should be a routine surgical procedure - I'm a little worried because my son has never had surgery nor have I ... I know that nothing is guaranteed ... but I do believe that everything will turn out all right.
Here are the events from yesterday:
Jonathan woke up with a fever on Sunday morning. We didn't have a thermometer but we knew that he was feeling warmer than a low grade fever. Unfortunately Jonathan did not want to take his prescription medicine so we had to end up forcing him to drink it. This prescription medicine was to help him with the pain and would also help with the fever. This medicine was also 'safe' such that he would still be able to have his surgery. For example, if he was taking Motrin - then we may not have been able to have his surgery because Motrin affects how the clotting / bleeding process works (medical professions ... please excuse my mucking this up).
The original intention on Sunday was to take Jonathan to the San Francisco Zoo - but with his fever and pains increasing - it didn't make any sense to try and go out. Our main concern was to get home as quickly as possible so that we would be nearer to Stanford in case any emergencies arises. By 10 am his fever and pains were reduced although he was very lethargic and non-responsive.
At 4 pm - after I returned home from doing some chores - going to Longs Drugs, Safeway, etc..., I arrived to see Jonathan drinking some juice - only to see him throw it up. I started to get concern because some of the things they always ask us when we go to a doctor's visit are, "Does Jonathan have a fever?", "Has he vomited?", "Does he have a cough?". At this stage he had done two things that raised my 'panic' level and when he started to shiver / tremble we decided to call the on-call Pediatric Oncologist.
By 6 pm Gabby had left with Jonathan to go to Stanford ER - because the on-call Oncologist wanted us to make sure that Jonathan didn't have a bacterial infection. He wanted Jonathan to see a doctor and for some blood to be drawn so that they could test it. Gabby and I had decided that we didn't all have to make the trip - especially since I was feeling physically (and probably mentally) drain she would go with Jonathan. The end result was that Gabby and Jonathan didn't reach home until 3 am with the conclusion that Jonathan was fighting a virus and probably didn't have a bacterial infection.
With his symptoms getting worse we were wondering if they would still have the surgery. The good thing about Stanford is that they are always calling to follow-up on things. So on Monday morning we got two calls - one from pre-op and another from nuclear medicine (to verify that there were no aftereffects from the bone scan). The end result was that his audiogram was postpone to another date (to be determined) and his surgery was still on - but moved to 12:30 pm.
Jonathan didn't go into surgery until 1:30 pm but during that time he watch two movies - Chicken Run and the Vegetales Movies. His stomach was hurting for most of the time and he still had a slight fever. The only consoling factor was that he was on drips so at least he was getting hydrated ... but I wish he wasn't in so much pain.
It's 8:30 am on Sunday 23rd January and the information we have been getting from our doctors is starting to sink in a bit. Jonathan pains - which had stopped and was markedly reduced about a week or two ago are returning. This is not helping my mood because it makes it difficult for me, for us.
Here are my thoughts from yesterday:
We had three main things we wanted to get done on Saturday and I'm glad we did get it all done. The first was to clean up the apartment, go to church - because the mass intention was for Jonathan and lastly, go to Chuck E Cheeses.
It's 1:15 pm on Saturday 22nd January and we've just left by our friends to drive up to our apartment. We had decided that we would all go in our uncle vehicle so we wouldn't have to go in two vehicles and it gives the kids another think to be happy about because they are traveling in a different car. We got home around 2:30 pm and we started to clean. Gabby's parents are coming up on Wednesday and we wanted to make sure we had the apartment in some sort of 'presentable' condition before they arrive. We also wanted to move the bed from the study into the kids bedroom so Gabby's parents could get a 'better' room to use. Since the kids don't sleep in their bedroom anymore - but with us - Gabby's parents would get the room all to their selves - minus the kids toys (smile).
It was really great having our uncle and aunt to help since we were able to get a lot done in a short space of time. As usually, towards the end I was on the phone - and lately I've been getting jokes that I should have a phone and / or a computer attached to my head so I'll be connected all the time (smile). So I finished my phone call and we left at 4:30 pm to head over to church. We reached at 5:02 pm, which meant that mass had already started so the question is did we reach late because I was on the phone and kept everyone back or did my uncle drive too slow? (smile). The good thing about my uncle is that he likes to give jokes but he could receive them just as great as well (smile).
During mass, when the prayers for the people were being said, I was telling Jonathan to listen. He was laying in my arms and listening. He heard his name and he had this smile on his face that he normally puts when he is trying to hid a smile. It's the kind of smile that he uses when he wants to blush as well. When we reached the end of mass and they were getting ready to read the announcements - the priest called my name - "Walter - where are you?". I raised my hand so he could see me. The priest says, "Walter - could you bring Jonathan up here?". I'm a little surprised and I leaned over to pick up Jonathan since he was sitting on Gabby's lap. At first he started to fuss but when I lifted him up into my arms he was all quiet. I walked up to the front of the altar by the priest. The priest asked the entire congregation to remember this child and his family in their prayers - that he was a stage 4 patient. It brought tears to my eyes but I quickly got that under control.
After mass we got the sacrament of the sick administered to Jonathan. We also saw a nun and she told me something very nice, "We are shouting down at heaven's door". I knew the entire school was praying for him and I knew what she mean - since I had all my friends and family knocking at heaven's door, making a lot of noise for this boy who was my son.
After church we went over the Chuck E Cheeses. Jonathan's pains were coming back - in his legs. We also had to be careful picking him up as well - since sometime his back would hurt - we are guessing the reason is because it may be close to his kidneys - where the majority of the tumor is located. As I say this - I remember one time thinking back to the movie "The Chronicles of Riddick" and the bad guy - how he can make his body go though another body - and thinking I wish I could do the same and just pluck out this cancer.
Going back to the present - it is now 9:30 am on Sunday and I have to abruptly conclude this journal entry because Jonathan's pains are increasing and we are considering calling the pediatric Oncologist on call.
Wow! It's a week since we first got the news that Jonathan had a mass by his adrenal gland! It's amazing how things have changed including my perception of my son's life. It's amazing how we are (still) worried about the small things in life even though I don't know the outcome of my son's treatment plan. We wonder about trivial things, such as, what will we do about his schooling, would he have to skip a year or even whether we should hold a spot?
The news we got yesterday from the Oncologist was absolutely devastating. The doctor managing Jonathan's care had gotten a chance to review the results from the bone scan and the picture that was painted to us was very frightening. They confirmed that Jonathan has a tumor growing out of his adrenal gland and it goes around / over his kidney and surrounds the main artery from his heart. The tumor is also starting to invade his liver. There are also two small tumors on his right leg and one on his left leg. There are two other areas under suspect but the doctors are not sure. Jonathan is definitely a stage 4 category cancer patient. He has a 40 percent chance of survival - given his age, the stage of the cancer and the possibility that it is Neuroblastoma.
I've always thought that the more I talk about something or journal it the easier it is to handle it. Generally this is true ... but the other piece of information we got was a high level overview of Jonathan's treatment and talking about it gets worse each time. The general treatment for high risk cancer patients such as Jonathan, is that he will get about six months of chemotherapy, surgery to remove the remaining growth, intense radiation to make sure there are no more tumor cells and then stem cell replacement. For the chemotherapy, the treatment is generally every three weeks with Jonathan having to stay in the hospital for about three to four days at a time. For the surgery and maybe the stem cell replacement - he is expected to stay in the hospital for a period of a month and will be in an isolation chamber - since he'll be susceptible to any disease - and simple disease like the cold or flu will easily kill him.
Unfortunately my theory of, "the more I talk about something the more it helps me" does not work in the case where I have to think about his treatment. I am really afraid. I'm afraid I could lose my son. I'm afraid for the long treatment - of not being there for him and what he'll have to go through. I don't know what to do.
The frustrating thing is that I still have to work and go on with life. It's unfortunate that the cost of living is so high in California because it demands that every individual MUST work and for me the option of no pay leave just does not make sense. At the back of my mind I'm thinking that going back out to work might be a good thing - but I don't know how I will manage working and at intermittent stages taking time off while Jonathan is receiving chemotherapy. I'm guessing this is a discussion I'll have to have with my employers when I return. I must say though - that my employers have been very great, very understanding and very accommodating.
I woke up at 6 am on Saturday 22nd January not by choice but because I forgot the alarm on my watch on. It's probably a good thing too because I wanted to talk to a (priest) friend of mine and I had promised him that if I didn't call last night, I would call in the morning. I've been having trouble putting this experience with my son in terms of my religion and I wanted to hear the opinions and advice of someone I trust and someone with authority. I know what other people thing I should or should not be doing - but I wanted verification that what I was doing was right. There are members in my family that think my (or our) actions should be more pronounced, more "fanatically" as I so commonly like to put it and that is not me. My problem was to figure out, "what if I am not as prayerful as they are" or "what if my thoughts are not as positive" does that mean my son is not entitled to a divine experience? Does that mean he will not have a recovery, that he will die if I don't do what the other people do with regards to praying to God as regularly as they do or in a certain (formal) fashion? This was another pressure I did not want to have, but in this situation was creating another type of stress.
Fortunately I had a priest who I grew up with and whom I trust. I wish I had a priest in the US to discuss this with but the one priest who was my spiritual direction has moved and I have not really built a relationship with any others. My phone conversation with my priest friend went extremely well. I was really happy to get a chance to speak with him. I feel more at ease on the way I do things but I'll also motivated to do more.
It's 7:15 am and I've just finished my international long distance call to my friend. I've decided to check e-mail and noticed another friend, who was my best man at my wedding is online. As I prepare to type him an instant message - he send me a message. I give him a call and update him with the news. My friend is a doctor as well and what is good about talking to him is that he helps put things into perspective. Sometimes the perspective includes other information that our doctor has not told us but I'm not sure how to put it all into perspective with regards to Jonathan. For instance, when they say Jonathan has a 40 percent survival rate, they are talking about a 40 percent survival rate during the first five years - since for cancer patients, things are measured in five year periods.
The future is so unknown, so unclear, that I have my moments of complete and utter despair and moments of not complete and not utter despair. I have to start looking forward, of figuring out how to plan for this and making it all 'work'. One thing I know for sure is that we have to look at Gabby reducing her hours completely - so instead of working five days a week - from Tuesday to Saturday, she will only work on Saturdays. That's going to be a financial hit but my plan is to use this weekend to figure things out.
Looking forward ... Jonathan has another long day on Monday. Actually I should probably stop saying a long day because from now on, all his days are going to be long. He has an audiogram test at 8:15 am otherwise known as a pre-chemo baseline audio test. Apparently when chemotherapy is administered ... one of the side effects is that hearing loss occurs and this allows them to establish what was his hearing before his chemo treatment has started.
At 1:10 pm on Monday, Jonathan will start getting prep for his surgery. There are two biopsies that will be done, the first is to take a piece of the tumor, while the second is to take some bone marrow and bone. Jonathan will have to spend at least one night at the hospital and depending on if they have to cut instead of using Laparoscopy ... he could possibly spend more than one night. The plan is to start chemotherapy as early as next Wednesday or Thursday.
Jonathan's pains have also return. He complains about both legs hurting and we have to be more careful when lifting or 'rough housing' with him. He is definitely not the 'rough and tumble' boy that we knew just months before. The plan this weekend is to go Chuck E Cheeses tonight and the aquarium on Sunday. We think this is going to be our last weekend as a somewhat 'normal' family before everything changes.
It's 1 pm and we are in same day surgery waiting for the anesthesiologist to prepare Jonathan for his bone scan. Today, surprisingly has not been too bad. We woke up just after 6 am and left home (by our friends) at 7:45 am to head up to Stanford. We arrived at Oncology at 9:30 am for them to put an IV to make it easier for him to get whatever fluids or blood that is needed. Unfortunately putting in the IV this time around was not as 'fast' as on Wednesday but fortunately they got it on the second try. I don't know if it was because Jonathan was just tired and sleepy - but he cried and fought less this time around.
The nice thing is that he got to pick a toy out afterwards and he got a really nice coloring set - with big crayons and nicely colored markers. He was very happy to get it and afterwards while we were waiting - he was having lots of fun making his pictures. I have to remember to stock up on some 8 x 11 paper so Jonathan will have paper to color on.
At 10 am we had finished with getting the IV inserted into his hand - just above his wrist - and headed over to Nuclear Medicine department. This department was over at the main hospital but fortunately the children hospital and the main hospital are connected so it was a matter of walking across. Things at nuclear medicine went well. Jonathan got the contrast inserted via the IV into his body and by 10:45 am we were done.
When we had first arrive at Oncology in the morning - we found out that Jonathan had an audiogram schedule for 11 am. Because of what happened on Wednesday with the surgeon consult - I've now make it a habit of verifying that each appointment we get has been authorized else we'll have to pay out of pocket and just the thought of paying out of pocket is more money than I can afford. As it turned out the request for the authorization was only submitted that morning - probably around 9:30 am as well - so we ended up missing our appointment for the audiogram. We are hoping to get the audiogram later today - after his bone scan - but we'll see.
2:00 PM
It's 2 pm they just put Jonathan to sleep. The bone scan is scheduled to last about one hour so we decided to head up to Oncology to see if we can meet with the doctor handling Jonathan's care. It's interesting the way that Gabby and I handle interacting with the various staff and medical professionals here. We've already had one argument over the handling of Jonathan while he was being prep for his bone scan. Gabby thinks I'm too aggressive with my interaction and that since she has a better understanding and interest in the medical field that this gives her some sort of advantage when compared to my interrupting things.
Yesterday we had our appointment to meet with the surgeon or as they call it - a consult with the surgeons. This time we managed to leave fairly close to the time we wanted to leave. We arrived at the doctor's office around 12:45 pm so we had a 15 minute wait. The door to the doctor's office was closed and we figure that they were on lunch. By 1:05 pm the door was still closed and no one had arrived so we started to wonder if we were at the right location. I started to call around and got a hold of someone at Oncology. As they started to investigate what was going on - we saw two doctors coming down the hall - our surgeon had arrived.
The surgeon we met seemed nice and he apologized for arriving late and asked if we could wait a bit longer as he wanted to review the CT results. When he came back he gave us the news. The CT results confirmed that there was a mass in Jonathan. The mass was growing around his blood vessels instead of pushing it away. I'm not sure what's the value of that information - growing around vs pushing away - but I have to remember to ask someone.
They also saw another mass either by or on his liver. If the mass is in his liver then it means that the tumor or cancer has started to spread. They suspect that it is cancer called Neuroblastoma. They suspect that he is at stage 4. I have no idea what this all means ... I need to do more research. We started to ask more questions and I was doing fine until the end of our consult. I couldn't believe I cried in front of the doctor. I guess my mind 'jumped' to the future and what a stage 4 cancer could mean and I couldn't handle it. As I write that line - tears come to my eyes. I've decided I'll stop thinking about the future and take things day by day - but I do know that during my initial browsing around on the internet - there were other parents who have described their experience with their kids going through Neuroblastoma. It's now time for me to read their stories.
We eventually reach home around 5 pm and we were very tired. We wanted to reach as early as possible because we wanted to try and spend some time with Arielle and focus our energy with her. She was upset! She didn't want to talk to us! It took some time but she eventually mellowed out. I took her upstairs to play tea party - she absolutely loves that game.
After dinner we all went out to MacDonald's to play in their play room and eat some ice-cream. The kids had a great time. It was great to see all of us together like a 'normal' family. Friday promises to be another long day. I'm afraid that I wouldn't have the energy. I'm very tired. Now that I know where our path may lead us I have to start figuring out what I'm going to do at the office - with taking time off etc. I'm not too sure what my options are but I hope everything works out well.
As I end this entry - I have a favor to ask all of you reading my blog. Jonathan just loves to get (postal) mail. If you could send him a card - maybe with a sheet of stickers or other small token that kids will appreciate - that will just make his day. If you address the envelope in his name - that will make his day too - because he knows how to read his name. If you don't have my mailing address please send me an e-mail and I'll give it to you - or contact the person you gave you the link to this website - since I may not know all of you. For my immediate and close family - sending a card every two weeks or so would be one option for you to explore.
Thank you all for your prayers and I'm hoping that Jonathan has a speedy recovery.
It's 11 pm on Wednesday 19th January and this has been one of the longest days in my life. I'm finally home, where home is by our friends, and sitting on the bed doing a data dump to my journal. Originally I vowed not to go on the computer because I was too tired - but for some reason Jonathan is all wired up and he cannot go to sleep - and when that happens I don't even try to go to sleep until he does - or else he'll wake me out of my sleep.
Interestingly enough, I was telling Gabby that I had such a mix of emotions that I wished I could have journaled more regularly so that I could capture my emotions more accurately. I remember going though periods of despair, happiness, frustration, and I know depending on when I actually sit down to journal, my mood for that day will determine the mood of what I write and how I say things. Overall though ... today was a good day. We didn't get any new information but we got over one hurdle, although a small one, but at least it is an experience that makes us wiser and more comfortable with future (potential) events.
Here is a recording of the days events as I remember it:
I went to bed rather late on Tuesday night. I probably hit the sack around 12 am. I remember being hit with a thought around 12:05 am and memories of my mother came to me. It was two distinct memories - and although I cannot remember it clearly - the first one was more of a message of peace, while the second one was something she has said in the past - either while I was growing up or when Jonathan was younger. For some reason it prompted me to look at the time so I could ask mommy what she was doing at 4:05 am (Trinidad) time. I was telling myself it was all in my mind and that she was probably sleeping.
I woke up at 8:35 am - about 10 minutes before my alarm was scheduled to go off. I wish my body would stop doing this - because I could have gotten 10 extra minutes - but I'm sure if I didn't set the alarm I probably would have slept until 9:30 am. I remember thinking to myself - wow, I've slept for 8 hours! It's been a long time since I've done that - and I wish I didn't have to get up! I was not looking forward to the day's events - too many things to do, and I was not sure how well each event would have gone.
The plan was to leave at 10 am and arrive at Chuck E Cheeses at 11 am. That way Jonathan would have had a chance to drink his mixture of Cranberry juice and contrast and if by 11:15 am he didn't drink it - we would have had enough time to head over to CT / MRI for them to "force it" down his throat with the tube.
It was 10:20 am and we were now leaving our friends house. I was depressed and was crying. I had just spoken to my mom and apparently she was up at 12:05 am (or 4:05 am - her time)! I wanted to give her an update of the days events so she could remember to pray for Jonathan at each event. She is so much better at praying that we are that I wanted to make sure she had all the information she needed.
It's 10:50 am and we are no where near close to Chuck E Cheeses and Gabby is wondering if we will make it or should we just head straight to the hospital. The good think is that traffic was moving fast and as my aunt taught me - if you hope in between a line of cars and go the same speed they are driving - the likelihood of you getting a speeding ticket is markedly reduced. I wasn't looking forward to them inserting a tube down Jonathan's throat so I remember telling Gabby that we'll see where we reach at 11 am before we make any decisions.
It's 11:05 am and we pulled into the parking lot of Chuck E Cheeses. When we took the turn off from the highway - we started to tell Jonathan that he has to drink this cup of juice. The difficult thing was that Jonathan didn't want to drink anything ... couple with his extreme loss of appetite it was going to be difficult to get him to consume this mixture. We told him that if he drinks it we will go to Chuck E Cheeses. I think that in the beginning he didn't believe us but when we pulled into the parking lot he knew that we were telling the truth.
It's 11:15 am and Jonathan has only taken a couple sips from the cup. The juice tastes awful. What kind of juice is this daddy? I tell him we put vitamins in the juice. Gabby doesn't like it that I "lied" but I had to explain why the juice tasted different. We continue to coax him until he has drunk between half cup to 2/3 cup. I think he has drunk so much that his tummy has started to hurt. We try a new tactic - we'll go inside Chuck E Cheeses and he can take a drink, play a game and then take another drink.
It's 11:20 am and time is going but for some reason I'm not too worried. As we sit by a table, we tell Jonathan that he has to take two big gulps and then he can go and play his first game. He tells us that he cannot take a big gulp but can take a small one. Gabby says then he has to take 5 small gulps. As he starts to drink I count 1 ... 2 ... 3 but for my first count he has taken two small gulps so by the time I count to 5 ... he has drunk about 10 small gulps. I take a look at his cup and it's almost done! I'm so proud of him. We play one game and then he finishes his cup! He has exceeded my expectations and I'm so relieve that my mood has brightened up considerably.
It's 12:35 pm and we have just arrived for our consult with the surgeons. We need to do a consult first before they can do the biopsy. It's late - since our appointment is at 12:30 pm and we should have reached earlier - but we had so much fun at Chuck E Cheeses that we left later than we should have had. I eventually found out that the authorization was never put through so we cannot have the consult anymore. We decided the next best thing was to head over to admitting to prepare for his CT scan. I remember telling Gabby that maybe his CT scan will show nothing and that the reason we didn't have the consult is because he does not it anymore.
It's 1:20 pm and admitting goes well. Gabby has taught me to be less aggressive when talking to admitting - especially when I get that question about having our SSN. I try the new tactic she recommends and it works beautifully. We finish around 1:45 pm and head over to Oncology so they can put an IV to make it easier for the rest of the day's procedures without having to keep sticking Jonathan with needles all the time.
It's 2:00 pm and we find out that we really should not have missed the surgeons consult. Apparently it was very important and they wanted us to get it done today. Unfortunately the delay with getting the authorizations was due to Oncology so there was nothing that could have been done ... but we found out that they had started to schedule his surgery for the biopsy already.
We ended up waiting a long time in the room while the nurse gets the things she needs to put in the IV. During that time Gabby and I are having fun with Jonathan. He is so happy. I feel sad for him because he does not know what is going to come next. They had the game "Bop It" in the room and Jonathan and I was playing it ... having loads of fun and laughing. Gabby thought she had two kids in the room and not one.
It's around 2:30 pm and the nurse comes in to put in the IV. Jonathan starts to panic. He starts to cry. He doesn't want the needle and doesn't want the nurse to touch his hand. The nurse gets another nurse to help her and with Jonathan sitting on me with my legs wrapped around his legs to prevent him from kicking - the second nurse holds his arm steady while they insert the needle for the IV into his right hand - just above his wrist. Jonathan is screaming and crying but as they wrap everything up he starts to settle down and becomes very quiet.
It's around 3 pm and we head over to same day surgery and meet with the anesthesiologist. She explains the things that they will have to do both to prepare for the CT, during the CT and after the CT. If Jonathan was not going to stay quiet - they will have to administer anesthetic and then neither Gabby nor I would be able to stay in the room with him. This was the most uncomfortable thing for us because we have always been at Jonathan's side for every major event in his life and I just couldn't imagine not being with him and leaving him with a bunch of strangers. I was so relieved to get Jonathan to go to sleep at 3:15 pm that we got hopeful that he will stay sleeping so he would sleep through the CT scan. Unfortunately there was an emergency case and our appointment at 3:30 pm got shifted to 4 pm.
It's 4 pm and Jonathan is still sleeping. We're in a good mood because my son is sleeping and we're hoping that he goes down real quiet so he doesn't have to get any anesthetic and one of us could stay with him. We had already decided that if one of us could stay - it would be me since we didn't want Gabby exposed to the X-Rays. My friend - Gabby's cousin - had explain that women are born with all their eggs and we shouldn't put her under any unnecessary risk - whereas men replenish their supply very quickly.
Unfortunately Jonathan woke up when I attempted to put him down and with all the strange people and equipment around there was no possibility of him going back to sleep. The decision was then taken for him to get anesthetic. The entire procedure probably lasted about 20 to 30 minutes - but it was the longest 30 minutes. Gabby was quite unhappy - especially with hearing all the monitors and seeing him in that condition. There was one moment when we were getting ready to leave and they were administrating more anesthetic that the noise from the monitors slowed down and I think it is at that moment that Gabby really afraid and upset. For some reason I was not as depressed as Gabby and I was trying to make her laugh and was reading some jokes I had on my palm pilot.
It's around 4:20 pm and our primary doctor at Stanford - from Oncology arrives. She informs us that the bone scan tests have been moved to Friday and there is a tentative scheduled for the biopsy with the surgeon scheduled for Monday. They are moving really fast and although that is nice - we are a bit concerned. We have a consult with the surgeon at 1 pm tomorrow (Thursday) and we are hoping to get some news about the CT scan and the way forward.
It's after 5 pm and we are allowed to go to Jonathan as he wakes up from the anesthetic. They have to make sure that he is fully awake and can drink some liquid before releasing him. It's takes Jonathan a good couple of minutes to wake up and orient himself but he does not want to drink the apple juice. It seems we are going to be here awhile and no matter what we try to coax him he doesn't want to drink the juice.
Gabby has an idea. Does he want Jello? Can we give him the Jello instead of the juice and would they release him? Yes to both answers and we were so happy. Jonathan decides he wants two containers of Jello! We eventually leave the hospital around 6:15 pm and head for home. It was a long day. We are hoping to get a good night's rest and sleep until 9:30 am before getting ready for our consult with the surgeons.
I've decided to give Arielle a call to say hello. She is upset with me and doesn't want to talk. Gabby gets her to talk a bit. By the time we reached by our friends' house it is after 8 pm and Arielle is sound asleep. I'm hoping I can spend some time with her tomorrow before we head off to Stanford. I'm toying with the idea of taking her along ... but I'll have to discuss with Gabby. We're thinking that we will be finished early tomorrow so at least we'll be able to get home early enough to spend some time with Arielle if we don't take her.
It's 10:30 pm on Tuesday 18th of January and we are both tired and drained. We have another full day at the hospital tomorrow. Jonathan did not get any tests done today so we left the doctors' office with no new information. We were a bit disappointed because we were hoping to start getting some news - on way or the other.
The plan tomorrow is for Jonathan to meet with the surgeons tomorrow at 12:30 pm and to have his CT scan at 3:30 pm. In order to get a biopsy the surgeons usually meet with their patients first and then a date is set for performing the 'surgery' to do the biopsy. Unfortunately the surgeons only meet or have clinic on Wednesday but we were lucky that tomorrow is Wednesday so Jonathan was squeezed in to have that meeting with the surgeons or else he may have had to wait until next week. What this means is that his biopsy - if necessary - can be scheduled at any time after Wednesday.
The CT scan is going to be an interesting experience. Jonathan has to drink a special liquid, called a 'contrast', which allows the imaging of his internal organs to be more distinguished (for all the readers with a medical background - my apologies for mucking up this explanation). We have been warned that this liquid tastes like crap, but it's going to be diluted in 8 ounces of juice - in our case we are going to use cranberry juice. He has to start taking the liquid from 11 am and must finished it by 12:30 pm. In case he cannot or does not want to drink it - the other option is to insert a tube down his throat to his stomach and 'force it down' - but this is not a preferred option since the experience will be most unpleasant and will be done with him fully aware of what is going on.
We do have a strategy though. We're planning to go to Chuck E Cheeses tomorrow at 10:55 am and 'make a deal' with Jonathan that if he drinks out this 'special juice' then he'll get to have 30 minutes of fun playing games. I'm hoping it works because I really don't want to have to resort to the second option. The thinking is that if he refuses to drink anything by 11:15 am - it will give us enough time to get to Stanford by 11:45 am so they can insert the tube.
Of course, all I've mentioned so far is the easy part. We have to check in at admitting at 1:30 pm in which Jonathan will get an IV inserted and given something to help him 'relax' and another type of 'contrast' to further help with the imaging. I'm hoping that Jonathan is relaxed enough so that he will be able to stay still during the CT scan. If he is still panicking, then he'll have to go completely under because the CT scan will last about 20 minutes and he really needs to be very still. Of course I would prefer that he doesn't have to go completely but only time would tell.
Our expectation is that by Thursday morning we would finally start to get more information on the way forward. The CT scan will help with confirming where is the mass, how large it is, and start with identifying what type of mass it is. For all we know the mass could be a lump of crap - but we'll see. I also know that the IV that will be inserted into Jonathan will be a semi-permanent IV so that when he comes in for his bone scan - they wouldn't have to insert another IV. We're kind of worried about that because we can see Jonathan panicking and wanting to pull it out. If that does happen I don't want to imagine what that will mean - blood squirting all over the place, etc... Again ... only time will tell.
On a lighter note - I am feeling much better ever since we arrived at home. For the entire day Jonathan was downcast, not eating and generally not being himself. His mood rubbed off on me ... and of course coming from seeing the Oncologist it surely didn't help my mood. As soon as we reached home - Jonathan returned to his old self. He became very active, talking a lot, even drank two glasses of orange juice! He was so much his old self ... we were teasing each other as well ... and having some laughs.
Tonight we stayed by some friends of ours. It's a great way to get some help with babysitting Arielle and not having to worry about cooking. It's also good because it gives Gabby a chance to chat and hang out with other people - other than me (smile). I think today was not a good day for Gabby. She very tired, very stressed and very worried. I know she was crying after coming from the doctor's office and her resolve might be breaking down a bit. It's good that we are by friends as I'm hoping that we all get a good nights rest and would be refreshed and ready for the long day ahead tomorrow.
It's 12:29 pm and we are at the doctor's office right now. We saw the Oncologist and we're waiting while she checks his lab work (the ultrasound) to see if they can arrange some tests today. Although I have not journaled it as yet ... I need to record it so I'll be able to remember it accurately. Based on what were seen from the ultrasound there are about three possibilities of what Jonathan may have. The one that the doctors' think is most likely is something called Neuroblastoma. The second possibility is called Wilms Tumor and the third is an infectious mass.
Speaking with the Oncologist - I can tell she is concern because one of the things she is worried about are the pains Jonathan has been having in his leg and through-out his body. Sometimes this could be a sign that the tumor or cancer has spread or is beginning to spread. I hope they are wrong - but you can sometimes look at a doctor and try as they might to hid it - you can still suspect when they are worried.
The plan now is to get a CAT scan, a bone scan and then based on these results - a biopsy. The unfortunate thing is that Jonathan will have to get anaesthetic or go under in order to get these test done. The primary reason is that Jonathan may not stay quiet for these tests and these tests take a while to do. The CAT scan takes about 20 minutes and the bone scan takes about 60 minutes.
Looking at Jonathan - we've come to realize that he is worried. Not worried like adults would be - but probably afraid because he does not know what is going on. While we were speaking with the Oncologist - Jonathan decided he wanted to leave to go and play with the toys in the waiting room. It was more of him wanting to get out of a situation rather than just wanting to play with the toys.
I've realized now I need to start doing more research. I want to learn more about chemotherapy. I want to learn more cancers and the possible treatment. The good thing is that our Oncologist was telling us we should remove any thoughts or impressions we have on chemotherapy since chemotherapy for adults is totally different to chemotherapy for children. Generally children react much better to chemotherapy treatment than adults and plus with their young bodies they are able to heal and respond better to the treatment.
We've been waiting for 20 minutes and I'm hoping that we can get the CAT scan done today. I'm really hoping to start getting some news - hopefully positive - on Jonathan's condition so we can determine the way forward. The lack of information with the various permutations and combination is frustration and makes us so anxious.
I'm also thinking about Gabby - and hoping that she holds up well. I could just imagine the internal struggles that must be going on her mind.
It's Tuesday morning and we're on our way to drop Arielle off by Auntie Margaret. Our doctors think that Jonathan will get admitted to the hospital today so we didn't want to take a chance and drop Arielle off to day care and then have to have one of us interrupt what we may be doing at the hospital to go and pick her up. Plus, I don't think having Arielle at the hospital right now is the best thing ... especially since she is fighting a cold.
I could just hear my mom and aunts saying - he is not going into the hospital - that the mass is nothing serious or at least not a tumor. Part of me would like to believe this - but then a part of me doesn't. I don't have the confidence that my folks have ... and I'm not sure if not having the confidence means that he wouldn't have divine intervention. I'm just hoping for the best and will just have to trust in God.
It has been an interesting morning thus far. I feel like it is the calm before the storm. Gabby and I woke up at 6 am and we forgot that we had set the alarm to use the radio instead of the jarring, beep, beep of the normal alarm sound. In some ways it was a nice way to wake up this way - more slowly, more peaceful - although at the time the radio was broadcasting news and not music.
Reflecting on the events of yesterday - Monday 17th January - it was an interesting day. I didn't go to bed until after 12 am on Sunday night and although my intention was to catch the early train to go to San Francisco for work - it didn't turn out that way. I woke up around 7 am with a splitting headache and I was thinking to myself - oh crap - what a great way to start the day. Gabby had already asked me to be quiet while I got ready for work - and I was doubly more concern about making sure that happens - especially since Jonathan was sleeping on our bed - next to Gabby. I've noticed that when Jonathan does go to bed - he has been taking some long naps and I wanted to make sure he got the chance to sleep as long as possible ... to allow his body to rest as much as it could.
My first day back out to work after hearing the news was interesting. I guess I was feeling a bit numb - it was far easier to tell people, my colleagues and friends at the office about the news. Most of my day was uneventful but on my way back home in the afternoon I started to feel a sense of dread ... started to feel scared. I guess I was afraid for the next day, of hearing the news.
When I arrived at my stop, Gabby and the kids came to pick me up. Gabby told me that Jonathan had not eaten much for the day. He only had two mini-pancakes and 1/2 glass of juice. His stomach had also started back hurting - although not as intense as before. I remember thinking to myself that I hope his pains were not coming back and that we could get him to eat later because we were both trying really hard to arrest his weight loss.
Earlier in the day Gabby was telling me that Jonathan had been asking to go to Toys R Us, and although I didn't really want to spend the money - we decided that we should take him - just to make him happy. The good thing was that Gabby had already started to explain to Jonathan what was going to happen tomorrow - how he was going to visit another doctor and the possibility of more tests. I remember Jonathan and Gabby discussing it again later in the night and Jonathan saying he doesn't want to go. That he does not want the needles - but at least he was not crying about it.
I think Jonathan is afraid of tomorrow's (Tuesday's) events. When I curled up next to him in bed - he was feeling warm. I was hoping that his low grade fevers were not starting back. I'm not looking forward to tomorrow either ... but I pray that God gives us the strength that we need.
Reflecting on my experience over the weekend - I still feel like I'm in a dream. Like I have not woken up and that soon I'll open my eyes and everything will be fine. The news on Friday was such a shock to me that I was in tears a couple of times during the night. I must say I cannot remember the last time I cried, and I remember thinking the same thing while I was crying. The last time that I can recall crying, was when Jonathan was admitted to the hospital for pneumonia in 2002 and they had to insert an IV into his arm. I was crying as much as he was ... but my pain was more one of seeing my son in such discomfort. I cannot remember what time I feel asleep on Friday but I remember leaving the fan on in the bedroom because I needed the 'white noise' in order to sleep - but it made the room chillier than I expected.
It's Saturday 15th January and I woke up around 9 am feeling like I had a fairly good sleep. For some reason ... sleeping in a chilly room can be a good thing. Maybe it makes the brain shut down more than if the room is warm. Or maybe it makes your body concentrate on warming the rest of your body. Who knows? For a minute I forgot about the news of the day before but my mission for the day was to tell my (extended) family so that I can have as many people as possible praying for him. I remember calling my auntie Althea and halfway during the conversation I broke down. I was a bit surprised with myself - I thought I had it under more control. My aunt kindly asked if I wanted her to tell the other members of the family - which was good for me - because I didn't think I could talk to anyone about the news anymore.
The kids did the usual thing that Saturday - watched the Disney channel - their favorite station in the entire world - and had some breakfast. One of the upsetting things for me was that Jonathan was losing weight. I'm not sure what was his weight two months ago - Gabby is sure it was 45 pounds - but when they weighed him on Friday he was down to 40 1/2 pounds. One of my new missions was to make sure he ate something ... and that it was healthy. So breakfast that morning was boil eggs ... which the kids love. Now Jonathan normally eats two eggs (on a good day) but today he insisted he wanted three eggs! This coming from a kid that is hardly eating! But you know Jonathan ... just like his daddy ... he wants to 'bite off more than he can chew' and he ended up eating about 1 egg at first with me coaxing him to eat the other half. In the end he ate 1 1/2 eggs and had two glasses of strawberry milk - which made me happy.
One good thing about Saturday was that we had a small dinner party to go to by a colleague of Gabby's. We were looking forward to it because it would have allowed us the chance to get out of the apartment and also not have to worry about cooking food. We decided to go to church for confession first - that was around 3:30 pm - and since we finished fairly early we went to Costco for some groceries. We arrived by Gabby's friend around 5:15 pm and in true kids style, the kids were very shy (at first) and didn't want to talk or go by anybody. But as kids go - when they are presented with toys - a (remote control) walking dinosaur that roars, a (remote control) car and a (real live) cat - all it takes is 20 minutes and they are not shy anymore!
It's Sunday 16th January and we went to church at Holy Spirit. I know the priest there and I think he is one of the best speakers around so I especially wanted to hear his sermon that morning. I was also hoping that Jonathan would have been administered the sacrament of the sick - so it was a double whammy reason why I wanted to go. After church and receiving the sacrament of the sick we headed over to OfficeMax. Gabby wanted to get two notebooks - a small one to chart Jonathan on a daily basis and a larger one so that she could journal herself. Try as I might - Gabby refuses to use the Journaling software I use - The Journal - so she ended up journaling in on paper. I'm not sure if she started - I'll have to remember to ask her later.
The cool thing about Sunday was that I got this brilliant idea to hold a prayer service over the phone. So at 1:20 pm we reached home and started to prepare for the teleconference prayer service at 1:30 pm. We decided to use the two candles we used to light the altar at our wedding plus another candle we used at the reception. We didn't light the other candle we used to 'take the light' at our wedding - partly because it may have been difficult to find and partly because it does not remaining lighting for a long time after it is lit. So the teleconference prayer service started at 1:32 pm by calling Gabby's parents. Gabby's parents used their three way calling to call my parents - so we only had to worry about one international long distance call. After both our parents were on the phone I used my three calling to call my Aunt - and there we had four families on the phone. It was kind of neat - being able to use technology in that way and my only regret was that we didn't consider inviting more people and making the chain bigger and bigger.
The prayer service was really nice - it lasted about an hour - and during that time Arielle fell asleep and Jonathan was playing. We had promised him that if he stayed quiet we would taken him to the movies - to see the new movie - Racing Stripes. Although he was not as quiet as I would have liked, Gabby convinced me that he behaved relatively good and that we should still go. Of course I did not need much convincing since my other mission for the weekend was to try and spend as much time as I could with the kids.
It's 5:35 pm and we are in the cinema watching Racing Stripes. The movie turned out to be fairly good - although the kids got bored about halfway during the film. As Gabby was saying afterwards - most of the jokes were for either older kids or adults and they probably got tired of seeing horses running!
We ended the day by stopping off in Target. I remember Jonathan seeing some sleeping bags for kids. The kids love to 'camp' out in their bedroom. Just before Christmas, Jonathan would ask for the blanket to be spread above the beds to create a tent so he could 'pretend' that he is camping. For Christmas he wanted to get some sleeping bags to further his experience of camping - but it would have been too many things to buy for Christmas. So when he asked for the sleeping bags that night ... and he was looking so sad when he could not get it ... I decided to cave in and buy two sleeping bags - one for Arielle and one for Jonathan.
I know, I know, I sound like a sucker - but I think deep down instead Jonathan knows something is wrong and my thinking is to try and make it as fun for him as I can ... plus it is really hard these days to say no to him. By the time we reached to the car ... I was not in a good mood anymore.
In looking back, the thing that frustrated me the most was that the news we got on Friday was that Jonathan had a mass. We didn't know what the mass was or even if the mass was something that was seriously dangerous ... and yet I was reacting this way! I still feel like I'm in a dream and that I'll wake up and all will be fine.
