Mass on Spine T10-T11-T12
JAY'S (Mail Bag) 
G'day everyone - The past few weeks have been a bit hectic - not only with me being at the hospital and having lots of tests, but also my darsly mum had to have all her tests done as well - the the news for both of us - well not that good for both of us but we soldier on and we still have big smiles on our diles and battling on the best we can. As you can see by the photo above - not matter what I have to have done, a smile always makes things better, I can't be glum and gloom all the time, that gets you know where. As bad as things might seem, really it's not that bad, I am use to having all these tests and after a while it becomes so routine that I enjoy it. Can't complain about it because they have to be done. 
Got to the Hospital (Monash Medical Centre) - we had to catch the train because our car is broken at the moment so me and darsly have had to take public transport, so we arrived at the hospital early because I not only had to have the MRI Scan I had to have other tests as well. The first stop was Pathology where I gave in my WEE sample for the Catecholamine test and then I had to have all my blood tests. All this took some time and then it was off to the MRI department for my scan. This machine you see me on (above picture) is the MRI Machine (I actually had to go in two different one's and I will explain that later). I put on the trendy cap and the trendy hospital pants and was prepared for a bit of a sleep (it is relaxing) and the machine doesn't hurt at all (it is very noisy) but to but the sound out a bit I was listening to music through the headphones. 
Here I go - Everything is set and I am about to go into the machine (I have porka with me) he is on the other side in my hand. This scan took a long time to do. It was not finished, but I had to get up and come out to the other bed to get another injection of Contrast called Gadolinium . 
Above - getting my injection of Gadolinium this will highlight the veins on my spinal cord and will show any problems. After the injection I had to lay there for a while for it to start working. Porka is with me as you can see. For those who don't know Porka - he is my mate and he goes everywhere with me, and everything I have had done over the years, porka has had done as well. 
Gotta Laugh - Laughter is the best medicine of all. Nothing else to do, so may as well have a laugh whilst waiting. 
Hmmmm - Think I will have a bit of a sleep while this stuff goes into me - I was a bit tired and darsly caught me out having a snooze - but have a look - I am still smiling. I just want everyone to know (well mainly) the young kids who have to have all these test, just to let them know that it doesn't hurt at all - the needle is just a tiny little prick in the arm which you don't really feel and the machine might look scary, it really is not that scary, it is fun - you slide back and forward and you listen to music. So next time you go for a scan and you are feeling a little scared, don't be scared, smile, laugh and have fun because it doesn't hurt at all. 
Now, here I go again, this time you will notice I am in a different machine (it is still a MRI Machine) but different from the first one I went into. The one I am in here is the older one and the first one was the newer one and the reason I had to change over was because the other one is a smaller machine and there was a little baby waiting to have a scan and the little baby could not go in this big machine - so I swapped. So the process begins again, had my injection and back in for more scans and this took a very long time and darsly was getting worried because she knew that it doesn't normally take as long as this time (my scans are usually long) but not as long as this one - all up it took 3 hours and darsly knew that something was not right, because just when she thought they had finished , they kept saying, NO not finished, we have to do some more. 
WOW - What a sleep, I just wanted to stay there, it was so relaxing, but also I wanted to get out of there and go home. MRI SCAN complete after 3 hours. 
Time to go, off with the funny cap - then needles taken out of my arm - get dressed and off to the next test. 
Where am I now?????? Looks a bit strange doesn't it!!! I have to have a special test call which tests my Lung Capacity LUNG FUNCTION TESTS . I had to sit in this booth - it was like getting locked in the booth on a game show. Darsly said OH great lets leave him there (LOL). I had to hold my nose and blow into the purple tube when the lady told me to. It was not easy, I had to hold my breath, then breath normal, then blow and blow until I could not blow any more.
There was a computer screen just outside the booth, each time I did a test it would show up on the screen my Lung Capacity. Each test I had to do was different. After thinking I had finished we were waiting in the waiting room and the girl called me back in and had to repeat one of the tests, so it was back into the booth.
Hospital - always waiting, and what do you do when you wait (try to solve a Rubik's cube). This is me waiting in the CHILDREN'S CANCER CENTRE at Monash Medical Centre. This is a week after my tests and I am waiting to see the Oncology doctor for my results. I am a bit up set because my wonderful Oncology Doctor Peter Downie is away and will not be back until October, so I have to see another dude (I have never seen anyone but Peter) so I was not looking forward to that. After a three hour wait finally got called into the clinic where this other Oncology doctor was. He was OK, but I would rather see Peter. Anyway I sat down next to darsly mum and without hesitation this doctor came straight out and said - OH you still have a MASS on your spinal cord at T10-T11-T12 - WOE - I was a bit taken back because he just came straight out and said that, I was a bit speechless and did not say anything so my darsly mum asked some questions. She asked "has the mass shrunk at all" - NO it has not shrunk. "Has the mass grown at all" - hmmm well I don't think so - then darsly said what do you mean you don't think so, it has or it hasn't and he just said I don't think so. Then darsly said, I would be a lot happier if you had told me the mass was not there at all and I would be a lot better if you had told me that it had shrunk - and the doctor just sat there and said - yes I can understand that but it is there. Then darsly said what are you going to do about it, and then darsly just said she would wait for Peter to come back and talk to him about it. My Catecholamine test the urine test was not back, so I don't have the results of that - this is a test which is a main indicator for Neuroblastoma, so I still have to wait for that result. Also the Lung Function Test was not back. The blood tests were OK, even though WCC was low it just made it into the range so that is good I suppose. So all in all my MRI SCAN was not the news we were wanting and now we will wait for Peter to come back. I have an appointment on the 8Th October to see Peter and this is when darsly mum is going to ask a lot of questions, especially to do with my headaches. Darlsy mum has said all along that this mass on my spine is causing me to have these severe headaches (she Say's it is pressing against a nerve) so this will be brought up when we go back to see Peter. It was a very long day at the hospital and did not get all my results, but I suppose I got the main one. You all might think out there that I am sad, I am not sad, you wanna know why - because I am still alive, I am able to walk, talk, play and live my life to the full - this is just a little set back but it will not stop me from living my life.
My darsly mum: Darsly had her CT SCAN done at the Alfred Hospital and then saw her Surgeon who did not have the best news. She has waited three months and now she has to wait another 2 months. The scan showed that the Bone Graft is still not healing (it has to congeal together) and it is not doing that - it is still in little fragments which is not good. The surgeon said - well we will just have to see what it looks like in 2 months. Darsly then asked - doesn't me telling you I have a lot of pain mean there is something wrong - he said - yes it does, and darsly said well why do I have to wait another 2 months, I am in pain, I have a numb leg, numb side and heaps of pain caused by the titanium in my back - but again he said we just have to wait and see what the next scan shows. Darsly was getting a little angry and she said, this is the last time I wait - I will wait 2 months and the next time I see you, something has to be done because I am not waiting another 2-3 months after that. GO DARSLY. 
SNOWFLAKE: Poor little Snowflake - Snowflake is my special little dog, she is my world and my best medicine and I did something I did not mean to do to her and I feel really bad. Snowflake was walking through the back door and her tail was not quite in the door (I did not know) and I slammed the door and broke her tail. She was crying and had lots of blood coming from her tail. Darsly wrapped her tail in a cold washer and we took her to the VET. Darsly was not happy because $500 later (yep) it was an expensive day. Snowflake Broke her tail and she had to have a big operation, the vet had to take 2 vertebrae and some of her tail off and now she has a bright Pink plaster on her tail . It was a bad week - Me and my scan results, Darsly and her scan results and Snowflake breaking her tail (what next).
Jays thought of the week: Even though darsly and I seem to go through so many tough things - we always look on the bright side of life & that is, "It doesn't matter what you have or don't have in life - the most important thing is we have each other" and I say to everyone out there - when things seem hopeless, when things seem too tough just BELIEVE and you will ACHIEVE.
More NB friends taken: , I lost my little friend Christopher Ramsey & also on 18th August I lost my friend Carter Finger This is why I fight so hard to find a cure - it is not fair so many of my little friends are taken away, but I will fight on for them, I will keep fighting Neuroblastoma and I will keep fighting to do everything I can to find a cure. Christopher and Carter are no longer in pain which is a good thing - but I will miss them and will always think of them
JAY'S Wristbands
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I want to find a cure for Neuroblastoma - but of course I cannot do that on my own. My wristbands are one way I raise noney for Neuroblastoma Research - it may only be a little bit of money I raise, but it is something towards saving one child's life. If we all bought just one of my wristbands that is just one step closer to the cure. The cure may not be here for me - but hopefully with more research into Neuroblastoma the cure will be around for others and more kids will get the chance to grow up and become adults instead of their lives being cut short by this horrible monster. If you would like to buy a wristband they are $5.00 Australian (if anyone has any enquiries about them) please place a private entry into my guestbook. Thank you - if you donate only a few dollars to Neuroblatoma Research you will know you helped in saving a childs life. I do lot's of other things to raise money for Neuroblastoma cure & have lots of great things coming up very soon. My wristbands say NEVER GIVE UP on one side and on the other they say I HAVE NEUROBLASTOMA IT DOSN'T HAVE ME along with my website www.jaysjourney.org - I also have T-Shirts.
"JAY"
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posted by *JAY* @ 6:12 pm
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