RADIOACTIVE MIBG SCAN (17th to 23rd June 2006)

JAY'S (Smile Mail)

P.O. Box 2075

Fountain Gate 3805

Melbourne - Victoria - Australia

G'DAY - This is the week that was for me & darlsy mum:

Wow - what a week from Tuesday to Thursday having MIBG Scans (they let me have Friday off - yippeee), my week at the hospital was documented by darlsy so darlsy mum will tell you everything that happened. I am ok, I did not like the injections, but everything else did not hurt at all, but took a very long time. So here is darlsy mum now to tell you all about the week that was:

It all started last Saturday 17th June, Jay had to take the Lugo's Solution 2 times per day on Saturday/Sunday/Monday/Tuesday and Wednesday.

Tuesday 20th June, we arrived at the hospital Monash Medical Centre (on time) but as you know waiting is something to be expected - so that is what Jay and I did - we waited. Jay was hungry, but not allowed to eat, as he had to fast from 7.30am that morning. The longer the wait, the hungrier and grumpier he became. So we played Eye Spy, and I think we had eye spy'd the entire hospital, so we had to find another game to play. We walked up to level 4 to the Oncology ward to make Jay's appointment to see his Oncology doctor on Wednesday 28th June, that took up a little bit of time, then we walked back to the Nuclear Medicine Department but still had a bit of waiting to do. Jay was very figity at this stage and was pacing the hospital floor. It's now 10.30am and we are still waiting and playing more eye spy.

12.30pm finally and Jay was prepared for the injection of MIBG tracer. Injections is something Jay is not fond of but tolerates them. The nurse put the needle into the arm which had to stay there, then a doctor had to be called to administer the MIBG tracer (which is radioactive). As the MIGB was being injected, a nurse had to take Jay's blood pressure every 2 minutes, for the entire time it took to administer the tracer. It took 10 minutes to totally administer the tracer which was concealed in what looked like a metal capsule. Jays blood pressure every 2 minutes was:
130/20
125/70
120/70
120/70
120/70 so his blood pressure was good through out the administration of the tracer. After that the nurse had to continue to monitor the blood pressure every 15 minutes and it was always around 120/70 or 130/60.

It is now 2pm, Jay had to stay laying down for atleast an hour after the tracer was put into him, then we had to walk around until 3.30pm.

Jay had his first lot of scans which took half an hour, they were laying flat which the camera's one above (anterior) and one underneath (posterior). The following scan took another half an hour, this one took was different, it rotates the body, slices and dices and takes photo's every 30 seconds. So, it is like Jay is laying on the scan bed and a camera is doing a big circle around his body. As you can see by the photo's above you can see what the scanning machine looks like (like a big donut).

I was watching the monitor, which is like a TV screen and it shows the body, and a particular part was glowing a lot brighter than every other body part and this spot was on the left at exactly T11-T12, so not sure of anything, that is just what I saw a big glowing spot. . On the rotating scan again this bright spot appears, hopefully it is nothing, but I see it very clearly on the screen. As the machines scanned around Jay's body, whatever it was is definately on the left side. The first day Jay has the RED on.

Next day, Jay has the Orange shirt on. As the day's go by the tracer is going through the body more and the body becomes brighter, objects which should NOT be there gets brighter. The body glows yes, but unless you are an expert and can disyfer what is and is not suppose to be there (well, that is left up to the experts) but abnormal things glow up brighter than normal things.

We did not have as much waiting to do today, the first scan took half an hour that was another done posterior/Anterior, again I saw the spots brighter, hopefully they are nothing. The next scan was set up for rotation taking pictures every 30 seconds and then slicing and dicing and lasting half an hour.

After this scan, the nurse asked Jay to go to empty his bladder, it was whilst he was gone she told me Jay has to have another injection. I said OH NO - you can break that news to him, he hates injections. I did not know he had to have another injection otherwise I would have told Jay. When he came back she broke the new to him and you should have seen the look on his face - he was not impressed, but as you can see by the photo above he let her do it and he said - oh it did not hurt.

As you can see above, the photo of Jay in the Orange shirt, that is the injection he knew nothing about. This injection is called DTPA, which has a very long name which is :( DIETHYLENTRIAMINEPENTAACETATE ) is that a big name or what. This is administered as Neuroblastoma sits on the Adrenal Glands above the kidneys and this makes the kidneys brighter also it is administered because Jay has had radioactive material put into his body and is an easy way to explain, it helps get the material out of the body quicker. Before this DTPA can be given, it has to get approval froma Doctor, so the doctor came into the room, approved it can be given, so it was them administered by injection and then the 6th scan could be done on the kidneys.
If you click onto this link it will tell you about
DTPA (Diethylenetriaminepentaacetate.

As I was watching the screen, the first kidney scan took 15 minutes and the right kidney showed very well but the left kidney was not showing as much but had a bright glowing spot on it - so again I really don't know what it was and why the left kidney did not show up as well as the right kidney. After this scan was complete, they had to do just one more which took another 15 minutes and that was it for the day.

This procedure went on for one more day Thursday we spent another wonderful day at the hospital having same scans each day (one great thing was we did not have to go back for Friday) great, a day off the hospital which made Jay very happy.

Now is the waiting, we will not know the results of the MIBG Scan until Wednesday 28th June (next week) so that will be a big week as hopefully on the 29th I go to have my Spinal Surgery - but that has still not been confirmed. We have to now sit back, wait and hope for great results when we go back on the 28th to see Jay's Oncology doctor. He will also be discussing Jay's continual headaches, so I will not be leaving the hospital that day until I am satisfied with the answers I get - hopefully great answers and great Scan Results.

I hope you take the time to look at the photo's above, these a just a sample of what occurs at the hospital. I took a lot more photo's but can't put them all up. So as you can see, it is not nice what these cancer kids have to go through, it is a long procedure Jay's particular MIBG Scan, and one that takes up many day's. Jay is happy not to have to go back to the hospital Friday and is going to go have a well deserved play, bike ride, walk, swim whatever he wants to do for his holidays.

Well that's it for now, if I keep writing I could go on for ever, I broke it down to a short story but there is a lot more to it. Jay is doing ok and says a big hello to all his little friends and tells them not to be scared if they have to have this MIBG scan done (it is only the needle Jay doesn't like) the rest is a breeze, he said it doesn't hurt, you just lay there on the bed, you can go to sleep if you want, it is not noisy like the MRI Scan, it is very quite and there is nothing to be scared about.

Thanks to everyone who drops in to see Jay, make sure you read all the journals, especially the one before this one because that explains the Lugo's solution. Please make sure that if you drop in, don't be scared to leave a message, so many people visit, but they leave without signing the guestbook, as long as your message is a nice one to Jay and giving him a bit of encouragement then you should not be scared to sign - Jay loves to read his messages, especially the other day, he was jumping up and down because he got a message from Hawaii - he thought that was cool.

That's it for now, Jay and I are going to go and have hopefully a hospital free weekend and we will see you all after Sunday (Australian time). OH don't forget we are a day ahead of America so our Friday is your Thursday.

Jay adding this bit: Some really great Aussies are here to get married this weekend, yep big fan of them - Nicole Kidman and Keith Urban - what great people they are. They are getting married in Sydney this weekend - and of course Nicole took the time for sick kids as she always does every time she is here in Australia (wonderful careing person).

MY POEM TO ALL MY WONDERFUL FRIENDS: Smiling is infectious - you catch it like the fluWhen someone smiled at me today - I started smiling too. I passed around the corner - someone saw me and they Grinned. When he smiled I realized something - I had passed it on to him. I thought about the smile - and I realized it's worth. A simple smile just like mine - Could travel around the EARTH. So, if you feel a SMILE begin - don't leave it undetected. Lets start an epidemic QUICK - and get the entire WORLD INFECTED.............(JAY)

Below a link to what I believe I am (A True Survivor)

THE SURVIVOR MOVIE (Who I am - A true Survivor)

ADD ON: Sorry some of my website pages are not appearing, darsly and I are on the trail (looking at the problem) and we hope to have it fixed soon - not sure why the pages are not coming up - if you are also having problems getting some of my pages to appear could you please let me know when you sign my guestbook - if we don't know there is a problem then we can't fix it. Thank you..

Don't forget to sign the guestbook I love to read my messages - Thank you.