The first week

Well..... to begin at the beginning....
Many people want to know how it came to our attention this time around.
Seth seemed unwell for a couple days, just a bit off colour. He threw up a couple times, but we put it down to the chemo. Sunday night (couple weeks ago now - how time fly's [flies???]) Seth's glands started swelling under his jawbone. They became quite large so that they stuck out of his neck. This was when we began to worry. The very next day I took him to Campbelltown for a blood test, x-ray and examination. The doctors there were hopeful of it just being a virus. Westmead requested the results and we got a phone call Thursday morning that they wanted him in for new blood tests. It was confirmed Thursday morning that there were some suspicious cells in his bloodwork. They took yet more blood for further testing and we got a phone call from them 6pm at night to confirm the cancer was back. We were back by 8am the following morning and Seth was to have his central line redone, bone marrow taken and lumbar puncture done and x-ray done. The x-ray confirmed that he had tumors on his lungs which is how T-cell presents. They didn't get him in to surgery until 2:30pm which was torturous because he had been fasting for so long. Then they ran out of time so they weren't able to do the central line. We waited all weekend without any information as his oncologist was on holidays. We were told we would find out how they were going to proceed on Monday. Monday was another long wait for surgery - 2pm was when Seth was called up for his central line to be inserted. We waited all day for the oncologist to tell us what was going on - never saw him. By Monday night I was over waiting patiently to see what the future held and requested to see someone, anyone at all who could give me some kind of information. I got a visit from an oncology fellow telling me that they couldn't tell me what was going on as they were waiting for approval for a new drug. Once they had the approval then they could tell us what to expect. Seth was in alot of pain with the central line - more than what I remembered from last time. He had quite a good bruise around the cut in the neck and had trouble moving his head around.
Tuesday we got the talk in the little room. The questions were answered, the information handed over and now we know what we are in for to some extent. I can't see Seth leaving the hospital for the remainder of 2012. His chemo is extremely intense. He is considered High Risk and will be required to undergo bone marrow transplant. There is going to be many fevers, many delays, many illnesses that come along with this kind of chemo treatment. His chances of getting through this are about 50% which is a fact we find hard to swallow and don't like dwelling on.
One day at a time is all we can manage at the moment. The outcome depends on how the chemo reacts to the treatment and how Seth reacts to the treatment. The cancer is already considered pretty aggressive as it returned while he was still on maintenance chemo. All we can do is hope that this lot works.
We have one bit of sunshine amongst all this and it is that Sienna is a perfect match to be a bone marrow donor. It is considered very lucky as only about 20 - 30% of siblings match. They like their percentages! It is nice to be on the side of the lucky percentages this time instead of the unlucky. This is the best possible outcome we could hope for in a bone marrow donor. The kids do so much better when it is a relative.
There are 2 ways a bone marrow transplant is done (from Sienna's point of view). They either give her a injection under her skin which makes her stem cells move to the blood and then they hook her up to a machine via a temporary central line inserted into her groin. The machine separates the stems cells from her blood, then pumps it back into her body. This happens for 5 days in a row. Or they make 2 incisions on either side of her back and extract a total of 300ml's of bone marrow from her hips - they can get about 10mls each needle so it will be roughly 30 needles into her hips to get the required amount out. Either way doesn't sound very nice, but they assure us she will forget the pain in a couple days time. We will be told more about the transplant when we get closer to the time.
Seth started his chemo on Wednesday - he has a cocktail of steroids mixed with 3 different types of chemo for 5 days - he has already had the chemo into his spinal fluid. They have found no sign of the cancer around his brain so this is also some good news. His marrow was about 60% (those percentages again!!!) filled with blasts (cancer) and we picked it up as early as we possibly could.
Seth is doing really well so far. They are very vigilant about making him as comfortable as possible. The chemo takes about 7-8 hours a day so we only have the morning to get outside and get some fresh air and sunshine. He only lasts about 30 minutes before he is too tired and wants to go back inside. The days are filled with lots of people making a difference to the kids in the ward whether it be cure our kids, camp quality, starlight foundation or any number of people trying to make a difference by volunteering their time, raising funds or handing out donations. It makes such a difference to life being lived in the confines of a hospital.
We will keep the blog updated as often as possible, but life just got a whole lot busier so forgive us if there is a little wait between postings.
Thank you to all who have left messages via facebook and on the blog. It is heartening to know there are so many people that are thinking of Seth and praying for him. A few words of support from so many people helps a whole lot more than you could possibly imagine. We are definitely not alone in this battle.

An Unfortunate Update :- (

Well its been a while since last post and thats because our little champ had been doing so well but unfortunately, as some of you probably already know, he has had a relapse and we are back to square one.
He was admitted into hospital today and had a bone marrow test and lumbar puncture and started on IV's. Unfortunately because of the type of cancer he has to now undergo much more intensive treatment to try and get him back into remission and then they will give him a bone marrow transplant straight after.
He was so sick the first time that we can't begin to imagine how hard it will be on him this time, he is so brave though and so far apart from a few tears has been doing ok. Its not fair though, why him? he doesn't deserve this. One positive is that his younger sister Sienna is a perfect match for his bone marrow which apparently only happens in 20% of cases among family members. Most people have to get extended family tested or hope for a doner that is a match, so Sienna is quite chuffed that she might be able to help her big bro.
Thankyou for all your thoughts and prayers, they mean alot and we will keep you posted on his progress.