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.

Quick update - things are good.

It was brought to my attention that I hadn't updated Seth's blog for some time - which is a good thing as it means things are running smoothly for us.
Seth is back at school and is getting a tremendous amount of support to help him feel comfortable. He has been having a bit of trouble adjusting back to school life and a few things have had to be put into place to help him.
His hair has grown back quite curly which seems to be a bit of a strange phenomenon after chemo and whilst I love it, he is having trouble doing it in the mornings.
He is eating like a horse at the moment so I am expecting some big growth spurts soon. I can't seem to fill him these days. He seems to be coping quite well with his chemo and is not vomiting up his methotrexate as he tended to do up to a couple months ago.
He is having blood tests done every 2 weeks and his counts are looking good at the moment. He had a bone marrow done a few weeks ago and the results are good - he is still in remission.
Seth is full of energy riding his scooter on the local skate ramp, learning to do backflips on our trampoline and bursting at the seems with up and go.
It is very nice to be posting a positive and happy update on the blog. Hopefully it will be a while till my next post which will mean that things are good.
Thanks for keeping up with our little man's progress.

Back to hospital

Seth returned to hospital with fevers again after he was out for about a week. It was again a Sunday night when he came down with another temperature. Off to hospital we went and onto antibiotics again. By Wednesday evening, the temperatures had gone for 48 hours and we were sent home. They couldn't find a reason why he was unwell. By Thursday night, though, we noticed that Sienna was feverish and so we checked Seth just in case and lo and behold he had another temperature. So, 24 hours after being released, we were back. This time they did extensive tests and were still not finding anything. The blood tests were showing a big drop in his platelets and along with some other symptoms, they had some concerns about Seth relapsing. As you can imagine, we were quite upset at that prospect and were holding out hope that they found another cause. They soon found out that Seth had two viruses. The first being influenza B and the second being CMV which is in the same strain as chicken pox. They had to do 2 more tests to check whether this is dormant or whether it is active, and if so how active. We have one test back and are waiting on the final test to tell us what the next step will be. At the moment Seth is receiving an antiviral medication which is as potent as chemo and is administered like chemo and drops his counts as does chemo. He has this twice a day through his canula. Unfortunately it harms the veins that the canula is in so it only works a couple of times and then they have to give him another canula to continue with the treatment. They are also taking lots of blood tests. Seth is not happy with being treated like a pin cushion and it is getting increasingly difficult for him to cooperate. Unfortunately, he is being held down now to get these things done which is not easy for me to watch by helplessly and not easy for him to endure. We have now been in hospital for 2 weeks - minus the one day home. I have come home just for the day to spend time with the girls and have a break. I will be back in tonight to relieve Brett. Hopefully we get this test soon. Depending on what it shows, will depend whether Seth continues this antiviral treatment and for how long. If it is long term then we will be able to bring him home but he will need a pick line in his elbow which is similar to a central line. This is so that we can hook him up to an infuser bottle with the drug in it and give it to him at home. In the meantime, we are just waiting for some news to see where we go from here. I will keep you updated when I return home again.

A Week in Hospital

Last Sunday, Seth had a low grade fever in the mid to high 37's so we kept an eye on him all day. By 3 o'clock Monday morning his temperature had reached 38.9. So off we went to hospital. The doctors had started him immediately on antibiotics via a drip (he wanted his central line back in now he has experienced the canula in his hand and all those blood tests) to begin the fighting process in case they were fighting a bacterial infection. After many tests and several blood tests they determined that the cause of the temperatures which went up to 39.9 was Influenza A and the strain was Swine Flu. This is not as alarming as the media has made it out to be and he was started on Tamiflu medication and began to recover quite quickly. Unfortunately, he came down with a second infection due to the fact that the antibiotics he was on had killed all good flora in his digestive system. This allowed a nasty little bug to grow out of control and cause terrible diahorrea. They then changed his antibiotics and added more medicine for him to take. We were able to come home on Thursday - just! His blood counts were dropping lower and lower even though they took him off his chemo. When he arrived his neutrophils were 0.6 (on his chemo his neutrophils should be sitting at 1.0) the following day they were 0.4 and two days later (thursday) they were 0.2. They were heading in the wrong direction and if they had gone below 0.2 we would not have been able to leave the hospital. He is in high spirits but is very bored after being stuck in hospital all week and now because I have holed him up in the house. His sisters seem to have the same sickness as he as they are suffering high temps and bad coughs as well. I have enforced a self inposed isolation zone on our house, hoping that this flu doesn't get passed along. So far Brett and I haven't come down with it - we have sore throats and headaches and earaches that seem to come and go but no temps or coughs. The doctors have assured me that it will come as I was the one exposed to Seth at the hospital. All the doctors and nurses came in with gowns, masks and gloves which Seth thought was a bit funny. All I could think, was 'I was in for it'. So far so good though - positive thinking and all that!
Seth has to go back to hospital on Monday and have yet another blood test. Hopefully his neutrophils are headed the right way and we can move on with getting back to normal.

Make a Wish Come True!!!!

The choppers

The beautiful Whitsundays

Whitehaven beach and Hill Inlet. The black water is from oil leeching out of the trees due to the large amounts of rain in Queensland.

Sienna's catch of the day

Cap'n Seth at the helm !

One of the many waterfalls due to the rainfall over the past 2 weeks. This one at Cid Harbour.

Our Boat "Brazilian Beauty".

We have arrived back from what was a fantastic week away to the Whitsunday's. Seth was granted his wish of sleeping on a boat and riding in a helicopter from the very generous "Make a Wish Foundation". It was the holiday of a life time for our family and we are so grateful that we have been able to enjoy this time together. We started off with a flight out from Sydney to Proserpine with a stopover in Brisbane. When we arrived, it was raining and flooding and we were told that it had been like that for a couple of weeks. The helicopter flight was deferred until the weather cleared up, so we went straight to the Waters Edge Apartments at Airlie Beach and relaxed. The kids had a swim in the pool, and Brett relaxed in the spa before heading out to dinner. We were up early the next morning to board our vessel "Brazilian Beauty". Brett had a 3 hour lesson run-down whilst the kids and I packed away our food & clothes, got fitted for our stinger suits and made the beds. As we finished Brett came down to the boat with the instructor and off we went. The wind was blowing and the rain was falling but we couldn't care less. After some practical advice and lesson's we dropped off our guide at Daydream Island and we were on our own. We spent our first night at Nara Inlet which was very protected from the wind and swell. The scenery was spectacular as the islands are very mountainous and the cloud hugged them so they looked quite mystical. The next day we woke to the blue sky trying to poke its way through the clouds. Nara inlet was so beautiful with waterfalls falling down the sides of the cliffs and into the sea. We sighted our first Sea Eagle and enjoyed a majestic rainbow arching over the island. We decided to go for a bushwalk which took us up to visit a cave with Aboriginal paintings and gave us a nice view towards just some of the many waterfalls in Nara Inlet. Once we had lunch, we pulled up anchor and sailed around to another protected area called Cid Harbour. This place was breathtaking, with more waterfalls into the sea, soaring mountain tops and the bluest water. The following day, we did another bush walk around into the next bay called Dugong Bay. This too was spectacular at every turn. One minute you are walking through bush, then rainforest, then a palm groves and then we were surrounded by towering Norfolk Pines. We waded through rivers and waterfalls and ended up all alone on yet another gorgeous beach. We didn't sight any Dugongs that day, but they are known to be in that area. We did however get a glimpse of a great big sea turtle that came up for air next to our boat before continuing his journey around the bay. We upped anchor once again and travelled to Hamilton Island, were we stayed there for 2 nights as the forecast was for big seas and strong winds. This gave the kids a chance to run around on a developed island. With the price of our berth, we were able to use all the resorts facilities so we caught the free shuttle bus over to the resort pool for a swim. The kids had never seen a resort before and were a bit awestruck. We ate pizza at a restaurant that night and slept well on our boat. The following day we practised our golf swing at the driving range, we went right around the island on the shuttle bus, walked around the sights, took lots of photo's and visited the art gallery while waiting for our fish and chips. We had some stiff competition with some local cockatoos over lunch, but we managed to fill our bellies to bursting and returned to the boat to get into swimmers for another trip to the pool. We ate dinner on the boat and went out for a game of 9 pin bowling - which is similar to 10 pin, but the balls are half the size of a normal bowling ball and makes it ideal for kids. The girls won all the games and the boys hung their heads in shame. We took the shuttle back to the marina and walked down to the ice cream parlour for a wickedly delicious hot fudge sundae to top off the night. The following morning, we left for a place called Butterfly Bay, where we could snorkel the reef. There were so many colourful fish and such a variety of coral we were not disappointed. We then headed back to Cid Harbour for our final night on the boat and the kids went fishing and boy did they have fun. Seth and Taylah caught lots of tiddlers and Sienna caught the biggest fish of the holiday. It could easily have fed our family but it was looking at us with such sad eyes so we let him live another day, much to Sienna's disappointment. We had some big fights with some very strong fish and in the end, the fish won, they took the bait and spat the hook and finally one whopper snapped the whole line right off. There were many big ones that got away but not before they gave us some very excited children. The next day, we set sail for the mainland to say goodbye to our boat. Whilst it was sad that this leg of our journey was now over, we were lucky enough to be looking forward to our helicopter flight. We settled in back at the apartment, had lunch, watched tv, rested and relaxed and at 3pm we headed down to reception where we were met by a limousine to take us out to where the helicopters landed. As you can imagine, the kids were beside themselves at the chance to ride in a limo and things just went up and up from there. For me, this was the highlight of the holiday. The view from the chopper was nothing short of amazing. The experience of riding in a helicopter in high winds was quite an adrenaline rush. Finally we landed on Whitehaven Beach and we had it all to ourselves. We had to take 2 helicopters as they couldn't fit us all in one and our pilots Mike and Forest set us up on the beach with a picnic hamper, stinger suits, snorkelling gear and then left us to our own devices. Whitehaven beach has some of the whitest sand in the world and it is so fine and soft, almost like icing sugar. We raced into the water looking very classy in our stinger suits and had a lovely time playing in the waves. We then filled our bellies with delicious food and drink and while the kids played in the sand, I wandered the beach taking photos and Brett relaxed and watched the scenery. We left just as day was turning into night and got some more spectacular photos. We went back to the apartment and put some very tired children to bed. Our last day arrived far too quick, so we decided to make the most of it and headed out early to explore Airlie Beach. They had some markets which we wandered through and the kids bought some keepsakes of their holiday. We then walked down to the man made lagoon and let the kids loose in the water. Afterwards, we returned to the apartment, showered and changed and were once again met by a limousine to take us to the airport. We arrived home around 8pm that night totally exhausted, but incredibly happy. This was a once in a life time holiday that can never be duplicated and will be remembered by each of us forever. Thank you "Make a Wish" for giving us such beautiful memories to hold onto.

Head shave and blood test

On Saturday night, we visited Seth's aunty Dan for the big head shave that she did to raise money for Leukaemia sufferers. The weather was brutal, but even so, many supporters turned up for the event. We have some pictures below to show off her lovely nude nut. This was really special for Seth to see how many people care and what they are willing to do in support of kids like him. The Worlds Greatest Shave has become such a huge deal in Picton as well, with many people, young and old getting involved this year.

Once, again though, Monday came around and we were back to reality once again. Off to the hospital for another blood test and Seth did incredibly well. I think he was really prepared mentally for what was going to happen and he was determined to be brave. His determination paid off and he managed to get through it without much fuss this time at all. This was a huge relief to me as I was feeling just as nervous as he was. He held my hand and squeezed tight and laid very still. The blood came out well this time and it was all over in a matter of 30 seconds. Phew... what a relief. He has developed a rash over his head and face that resembles a milk rash on babies. We found out yesterday that some children get this particular rash when they finish up on the oral chemo, but it looks like he is doing things a bit backwards, and has developed it at the start. As far as we know, it is nothing to worry about and they will keep an eye on it to see what it does. Apart from that, Seth is doing really well at school. He is fitting back in nicely, seems to be keeping up with the workload and is looking forward to his Make a Wish holiday in two weeks time. Peace is descending on our little family at last!!!