I've finally begun to journal! Since Saturday I've decided I wanted to journal this experience and I have not gotten around to doing it yet. My hope is to journal everyday so I can capture all my thoughts without them getting blurred as the days and weeks go by. I've also decided I'm going to blog this journal - my first time ever using a blog! I've journaled in the past - and still do - but not as regularly as I should but it's definitely going to be interesting to write a blog as well.
To put everything into perspective here is my understanding of the sequence of events. It all started during the week of the 5th of December when Jonathan was complaining of pains in his leg. I cannot remember where exactly - but I think this went on for a couple of days. As Gabby remembers it - the pain went away for about a week but came back. Initially we chalked it up to growing pains, but after the pains returned (just before the Christmas weekend), we decided to take him in to see his pediatrician. His first visit was on Thursday 23rd December at 8:30 am. I remember thinking that I wanted his leg pains to go away before Christmas Day so he could enjoy Christmas! Unfortunately the pain did not go away - as we would learn in the upcoming weeks. The events between then and now are all blurred but basically Jonathan was having pains in three portions of his leg - but normally one portion at a time, i.e. by his thigh, his knee, and by his calf muscle.
During that time our pediatric doctors ordered some blood work and we found out that his SED rate was high. The SED rate (sedimentation rate) is a nonspecific screen test for various diseases and is usually an indicator of inflammation in the body. To get more information about SED otherwise known as ESR you can check out Yahoo Health at http://health.yahoo.com/ency/adam/003638
This was Jonathan's first experience with having his blood drawn and with the high SED rate it meant he had to go for another blood test. Unfortunately when he was going for this second set of blood tests - the person at the lab could not find a vein and he had to be stuck a couple times. This, of course, was a traumatic experience for him and I believe one of the factors that makes him so 'afraid' when he has to go for any tests now.
The results from this second blood test showed that his SED rate had increased - from 38 to 49. There were additional tests done in the second rounds with most being negative except for the ANA test which came back high. The ANA or Antinuclear antibody panel test is used to detect if an autoimmune disease is suspected. To get more information about ANA you can check out Yahoo Health at http://health.yahoo.com/ency/adam/003535
From both sets of tests the doctors' knew that something was going on in Jonathan's body - but they didn't know what was the cause. Their initial suspicions were either a post viral infection or Juvenile Rheumatoid Arthritis (JRA). Because of how long the pains were lasting and other indicators I believe our doctors were leaning towards JRA rather than a post viral infection. To get more information about JRA you can check out Yahoo Health at http://health.yahoo.com/centers/arthritis_pain/0451.html
Because JRA was a possibility and we had reached the point where our doctors didn't know what was going on - they had to refer Jonathan to see a specialist. This was around the last week of December. The first specialist we had to see was a Rheumatologist (a specialist in rheumatic diseases) at Stanford Children Medical Hospital. The unfortunate thing was that the earliest appointment we could have gotten was the 10th of February - so our doctor wanted us to see a Othopedist in the mean time(a specialist in structural disorders of the skeleton, joints, muscles, fascia and other supporting or connective tissue such as cartilage, tendons and ligaments). The thinking was that if the Rheumatologist confirmed he has JRA then they would have referred him to see an Othopedist. So the plan was to try and short circuit the process since the appointment with Rheumatology was so far out. So we got an appointment for Jonathan to see the Othopedist on Thursday 6th January 2005.
So ... up until the end of the year, i.e. 31st December, Jonathan's pains have been located along his leg.
I remember Monday morning - the 3rd of January - Jonathan woke Gabby up around 2 am in the morning. He was having severe pains in his chest ... around the region of his last two ribs. The pain was so severe we considered taking him to ER. All along we were giving him Motrin - to help with the inflammation in his body and for the pain but that morning it took between an hour to an hour and a half for the pain to subside. It did not go away completely but it was reduced enough for him to fall back asleep.
Since his pain was subsiding, and the fact we were not 100 percent comfortable taking him to ER, we decided to wait until the morning, and take him to see his pediatric doctors. The good thing during all this was that my company give the New Years Day holiday as the Monday instead of the Friday which was unusual - but meant that most people were back to work - including our doctors.
Anyway ... Gabby and I could not fall asleep until very late. I suspect that I finally 'crashed' around 5:30 am and fell asleep around 6 am. I guess we were all so tired that none of us woke up until 9 am. By the time we woke up - the pain that Jonathan was experiencing in his chest was gone - and instead he had pains in his shoulder. Although our doctor's could not find anything wrong with him - we were so alarmed that I called both the Othopedist and the Rheumatologist to get our appointments moved up. We were able to move the Othopedist appointment to the next day - Tuesday @ 10:15 am - but Rheumatology had to confer with our pediatric doctors first - before making a decision.
After the appointment with our pediatric doctors - I was a bit more relieved because Jonathan was going to see at least one specialist tomorrow. Our doctors also wanted Jonathan to get a X-Ray for his leg and hip. I remember when we were called to take the X-Ray - I took Jonathan into the room with me. Jonathan started to panic and cry. He didn't want to be in the room. I keep reassuring him that unlike the blood tests - this test did not hurt. That it only took a picture. But he didn't believe me. He was bawling and screaming ... and wiggling and moving. In the end I had to get Gabby. I stayed outside the X-Ray room with Arielle while Gabby went into the X-Ray room with Jonathan. Gabby is better than me with holding him down and bearing his crying. Remember - this is not a normal cry of "I want my way" but a cry of "I'm really afraid and scared".
So it's now Tuesday 4th of January. We have our appointment with the Othopedist. It was an interesting experience. The doctor was nice ... made small talk. He didn't see anything wrong with Jonathan's X-Ray. We told him one of the reasons we were seeing him now vs later was that our appointment with Rheumatology wasn't until February - to which he responded that it's okay since the expectation is for him to do some basic Rheumatology. The funniest thing during our visit to the doctor was that he was asking where I was from and that he thought Gabby was an American because he didn't hear an accent from her! Well that made my day - because I'm always teasing her that she sounds like an American and that she has 'lost' her accent!
Jonathan was still experiencing pains in his shoulder and I think by Wednesday it had mostly subside. By this time we had reduced his intake of Motrin and I believe by Wednesday we stopped it all together.
It's Thursday 6th of January and Jonathan's pain has shifted to his stomach. We suspected that the pain is due to the Motrin especially since he was taking it so long. Fortunately we had stopped giving him Motrin because his pains were getting less and less. It was around this time Jonathan started to get low grade fevers. In the beginning we were not sure if it was a low grade fever since we normally noticed it just after he woke up. We also found out on Thursday that the Rheumatology department contacted our doctors and wanted Jonathan to go for another 'rounds' of blood test and an EKG.
It's Friday 7th of January and we are on our way to our pediatric doctors' office to pick up the lab forms and the doctors' orders for the EKG. We decided to do the blood work first because we had to do the EKG at Good Samaritan and sometimes it can take a while just to get in. As usual, Jonathan was scared but Gabby took him and fortunately they got a vein in one 'stick'. The only sad thing was that they had to take six vials of blood - so it took a while for them to collect all the blood they needed.
The EKG was easier because it was great telling him that this test did not hurt. This time Jonathan was a bit more receptive for believing us - after having experienced the X-Ray and the fact that it really didn't hurt like we told him. For the EKG he was apprehensive but the person who hooked him up for the EKG was a very nice lady who spoke to him and made it a friendly experience.
By Saturday and the following Monday - 10th January - we found out that his EKG was normal but his SED rate had gone up even higher - this time it was 90. It was around Monday or Tuesday we found out that Stanford was moving our appointment to the Friday of this week, i.e. 14th January.
It's Friday 14th of January and we are on our way to Stanford Children Medical Hospital. I'm going to make this (particular) entry short because I've been journaling the entire day (though not all the time). We meet with the specialists at Stanford around 11 am and during that visit the doctor had to confer with her attending - apparently they felt a lump in Jonathan's chest region, along the top part of his stomach. They spoke to our pediatric doctors and recommended that he get an abdominal ultrasound and some more blood tests done. It was around 12:15 pm and we left to head back to San Jose to pick up the doctors' orders and head over for the blood test - at the lab - and the ultrasound - at Good Samaritan.
I remember it like it was yesterday - actually I know it was two days ago - but now it feels partially like a dream and partially like it is so long ago. We had the ultrasound at 3 pm. I was in the room with Jonathan. They only allowed one parent to be in the room with the 'patient'. I remember the ultrasound taking a long time - about 45 minutes. During that time - maybe 25 minutes into it - the lab tech was telling me that they have to confer with the radiologist before we leave in case they had to take more images. I was thinking to myself - well that must not be good. I remember asking the lab tech how did it look and her response being non-committal. I started to get more suspicious. Around 3:45 pm they left to talk to the radiologist and I remember waiting for quite a while before they came back - maybe ten to fifteen minutes.
When they came back they told us that they were done and that the results would be forwarded to our doctors. They told me they would also be recommending a CT. Try as I might they didn't want to give me any information - which was kind of annoying - but it was furthering my suspicions that something was indeed wrong. On our way out of the hospital I called the pediatric doctors' office to let them know we had just finished the ultrasound but that nobody at Good Samaritan wanted to give us any information - so if they can please call us when they get the report.
It's now about 4:15 pm on Friday 14th of January and we decided that we would go to Chuck E Cheeses. For those of you that don't know - Chuck E Cheeses is an arcade for young kids. It's a huge (indoor) playground where kids - mostly between the ages of 7 and 2 go to have loads of fun. So we thought that with us being out the entire day and all that Jonathan was going through - to 'reward him' with a visit to Chuck E Cheeses. Did I mention that this is his favorite place as well. Anyway - we arrived at Chuck E Cheeses around 4:45 pm and ordered some pizza, drinks and tokens and off the kids went.
Around 5:15 pm I got a call from on of our pediatric doctors. They had seen a mass by the adrenal gland during the ultrasound. They suspect that Jonathan has a tumor. After that I broke down in tears and gave Gabby the cell phone. The rest is still a blur but at least I've managed to journal up to Friday - two days ago.
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