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!!!

Once in a lifetime experiences

Cure our kids, which is the charity that Seth's school supported with their head shave have given our family two really special days out. Firstly we were invited to a day on a boat out at Pittwater. We could not believe it when we were walked up to a 55 foot luxury yacht with 3 crew members. Seth was told that whatever he wanted to do, we would do it. When we were all loaded on, we sailed around Pittwater. Seth had a ball standing at the bow of the boat enjoying the freedom. He really is so at home on a boat, I think he might have salt water running through those veins. We pulled up into a little bay and anchored in to enjoy a swim. Seth was allowed to invite some friends for this experience and he had a ball running up to the bow of the yacht and jumping in the water with his friends. We had the yacht to ourselves and were given a hamper of food to share. After about an hour or so of swimming and diving and bombing we all reluctantly got out of the water. We couldn't believe it when our skipper pulled out a hot shower off the back deck for us to wash off with. The sails were hoisted and slowly we made our way back. We got to experience the way a yacht leans when the wind catches the sails as we sat at the bow and enjoyed the cooling breeze whizz past. It would have to be the most peaceful, relaxing day of my life. When we returned, we were greeted with cool drinks,a bbq lunch and a laze on the grass by the water. Needless to say, we all slept well that night. (Photos posted at the end).
Our second invite, came just two weeks later, when 20 lucky families were invited to a special extreme sports day. We turned up to a farm on the edge of the Nepean River for a day that was in honour of a little boy who lost his battle with cancer at the age of 5. So many activities were on offer, we weren't sure where to start. Seth wanted to ride on the harley's first, so we lined up and Brett, Taylah and Seth got a tour on a harley. The kids got to sit in a fire engine and blast the siren and knock over a stick with water from the fire hose. There were speedway cars for the kids to sit in, a big red army tank, which we unfortunately ran out of time to get in. We went down by the waters edge and had a ride in a speed boat, rides on jet skis and then we were called for the main event. This was a helicopter ride for everyone. Our family was split into two different helicopters and Seth got to sit up the front and was apparently keeping everyone entertained by singing into his headset. We got to do turns in the sky and hover over the river and basically had a blast. It took a long time to wipe the smile off all of our faces.
When we got back we were whisked down to the marquee for a sit down lunch of steak, seafood and salad. They then drew a raffle for someone to have a ride in the fastest bridge to bridge boat in Australia. We could hardly believe it when they pulled Seth's name out of the hat. His face just beamed. He couldn't eat his lunch fast enough. Once lunch was finished, Seth got suited up for his big ride. They put the boat in the water and did a couple of laps past in the boat and when Seth saw that the only thing in the water was the propeller he started to get a little nervous. Luckily for Brett, he got to cuddle Seth in the boat. They put their helmets on, and Seth was given a bag with some keepsakes in. Off they went on their speedy way in the fastest boat in Australia with everyone on the banks of the Nepean clapping for them. You can't buy experiences like that. They made Seth feel really special that day. The families around us were just so happy to see someone else have that special experience. It blows my mind, how there is so much goodness around. Not alot of people get to feel what it is like to be surrounded by such kindness and goodwill. It is an amazing thing to experience. Out of bad, comes so much good. After the big boat ride, Brett got a turn on his own and the driver went flat out and read the speedo and they got faster and faster. Brett said they got up to 120 miles an hour and still continued to go quicker. It was a day we will never forget.
The kids then had a great time swimming in the river, Taylah had about another 6 jetski rides and I got to enjoy a neck and shoulder massage whilst drinking a flute of champagne and ending with a drumstick icecream and a gift of beauty products.
We were called once more to the marquee to say goodbye, where we were all given gifts. I received a beautiful flower arrangement, Brett a bag of chocolates and goodies, the girls and Seth got a bag full of goodies and teddies and Seth got a board game and a clock as well.
We went home, fat and happy and extremely exhausted.
Back to reality... Seth had a blood test on Monday morning. It was his first since his central line had been taken out. They put the magic numbing cream on his arm to ease the pain, but he was just so scared. He cried and fought and refused to let them take the blood. We tried to convince him that it wouldn't hurt but he was just too upset to listen. Unfortunately, he had to be held down with force by 4 nurses to have his blood taken. It wasn't wanting to come very easily, so she had to jiggle it around a bit, which in the end of course hurt him. It was hard for him, and it was hard for me. He cried all the way home and begged to stay home from school because he felt sick and had bad stomach pains. So, I took him straight home to rest. He has to have a blood test weekly. I can only hope it is not like this every time. His counts were high enough to start chemo, so he is now on chemotherapy tablets 7 days a week for the next year and a half.

CENTRAL LINE IS GONE!!!

We have a very happy boy with us today. Yesterday, Seth had his Central Line taken OUT!!!! He is a bit sore, but nothing can dampen his cheer today. We were asked to get to hospital at 1:30pm for a blood test so they could find out how his counts were going. They are very low, with his neutrophils at 0. Then we were to make our way up to the day surgery at 2:30pm. Poor little boy didn't get taken into theatre until after 5pm. He hadn't eaten since 8am that morning and he hardly complained at all. The whole thing from go to woe only lasted about half an hour and the procedure was flawless. Incredibly, he has no stitches, as the hole is round, they just tape it up and put a waterproof bandaide over it. He has part of his central line in a jar to take to school for news which he is really looking forward to. He is unable to shower for 2 days, unable to attend school for 3-4 days and is to take panadol for the pain. He must be gentle with his arm as there is no stitches and his platelet counts are quite low, he could cause the wound to bleed quite easily. He needed panadol this morning and has found having his arm in a sling is helping ease the pain around his shoulder and chest.
Seth will begin maintenance as soon as his counts are up high enough. This consists of tablets every day. He has mercaptapurin 6 days a week and methotrexate 1 day a week. This is to be balanced so that the dosage keeps his counts well down. If they drop too far, they stop for a week, if they are not dropping low enough, they will have to increase his dose. This is to be continued for 1 and a half years which I am sure will stretch out a bit longer if they have to keep skipping weeks here and there to wait for his counts to come back up. At this stage, until they get a decent balance on his counts, he will be required to have weekly blood tests. This will now be a bit more painful as they don't have the central line to take the blood from. The good news is that we are able to take Seth to Campbelltown for most check up's now which will enable us to have more of a normal life around hospital time.
They have discussed what signs to look out for if a relapse occurs. These include, enlarged liver and spleen, aching bones, enlarged glands and similar symptoms to what we saw when he was first diagnosed. The doctors also can see a difference inside his eyes which means that it has gone to the brain, they can also see a drop in his counts that won't climb even when chemo is stopped. So, the doctors should pick up any abnormality before we see any signs physically.
I have attached a photo of the big day yesterday plus a couple of others of our very happy little boy.
WORLDS GREATEST SHAVE is coming up this weekend, and Seth's Aunty Danielle is shaving her hair for this great cause. She is hoping to raise $15,000. I have attached a link to her personal page so if you want to donate you can, or you can just have a look at some pictures and read her very special message of what this cause means to her. THANK YOU VERY MUCH DAN!!! http://my.leukaemiafoundation.org.au/personalPage.aspx?registrationID=370330