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

Central Line Chemo finished!!!

Last week was extremely busy with 4 days at hospital for chemo and a lumbar puncture. Seth has finally finished the chemotherapy that needs to be administered through his central line. This means that in a couple of weeks, the line can be taken out. He has been to school again for a couple more days, but is too tired to make the whole day. Tomorrow he has to have a platelet transfusion and also a haemoglobin transfusion. His counts are expected to drop further as the last two weeks of chemo continue to take effect. Hopefully there won't be too many transfusions for him as there is always the risk that he will develop a fever with a transfusion.
Once his counts begin to rise again, he will be put on what they call "maintenance" which is oral chemotherapy. They still haven't told me what is involved in maintenance so I cannot pass on any information about the next stage just yet.
Seth is very much looking forward to getting his central line out. He talks about it every day and asks how much longer every day. He says he doesn't remember what life was like without a central line, so it will be a great day when it comes out for him.

4 days of chemo and finally back to school

I am very excited to report that today (Friday) Seth has resumed school. He was very excited, but very nervous. He has been waiting for this day to finally come. I have spoken to his teacher this morning and feel very confident in her. She seems quite protective of him and I know she will look after him really well. I still left feeling a bit sick in my stomach from nerves and I can't stop wondering how he is going.
Seth has done very well getting to school today considering that he has had 4 days in a row of chemo. Monday, we arrived at 9am for his 6 hour treatment of chemo and Tuesday morning he woke up vomiting so luckily we were able to go to Campbelltown for his chemo. Wednesday morning we had a very early start. We left home at 6:30 to go to Westmead for his lumbar puncture and chemo. He was vomiting as we walked into the clinic, so they topped him up with anti nausea medicine to help him out. Yesterday we went to Campbelltown for his chemo and luckily he woke up feeling okay today. I gave him some anti-nausea medication and so far, no phone call from the school to come and collect him.
Next week he has another 4 days in a row of chemo with another lumbar puncture. This means that he won't be able to go to school every day next week, but hopefully he will get there for a couple days. At least we have made a start.
Seth still has no hair and he has been a naughty boy playing outside with his hat off. He has been told by me and by the nurses not to do this and unfortunately yesterday he did it again and now has tiny blisters on his head from the sun. This has scared him a bit into listening a bit more and now is very responsibly wearing his hat at all times (even inside) - talk about one extreme to the other!
Sienna has very successfully started "big school" and loves it. She is the first one up and can't wait to get her day started. She gets dressed and packs her bag and lunchbox and is ready to go with an hour to spare.
Brett saw his doctor this week and the fusion is strong and healthy. Unfortunately his nerve pain is not going anywhere and the doctor wants to give him a cortizone injection to see if this helps. Now he is able to start physio and exercises so hopefully this may help the pain a bit as he strengthens his back and stomach muscles. He is also getting booked in to see a pain management specialist.
I will update next week after Seth gets through his 4 days of chemo.

We have had a nice break, but chemo must go on.

Seth has enjoyed having a week off chemo and steroids and any kind of medication whatsoever. We have enjoyed (particularly me) having a week off travelling into Westmead. On Sunday, Seth woke up with a nasty cough, so I took him into Campbelltown Hospital to get it checked out. They said it was just a case of Croup which is viral and they couldn't do anything for him. However, the next day, he woke up and was fine, as if nothing had happened. I was supposed to take him to Westmead on Monday, but his blood count which was done on Sunday at Campbelltown showed that his levels were not high enough to start. They then booked us in for Thursday for a lumbar puncture and chemo (the 6 hour one), however on Australia Day (wednesday), I came down with a bad cold, earaches, headaches, chills so I rang the hospital explained the situation that I was unable to make it. They have booked us into Campbelltown Hospital again for Sunday for another blood test just to make sure his counts are high enough to start chemo on Monday. Unfortunately this means that Seth will miss out on his first day of school, which he was really keen about. He misses school very much and I was hoping this year we could get him there more often. I am sure we will once he is past this last phase.
If Seth's counts are good to go, then he will have chemo 4 days in a row, fortunately I can get 2 days of it done at Campbelltown.
News on Brett's recovery is not as good as we were hoping. He is up and moving around, but is in alot of pain, particularly down his left leg. It has been 5 weeks since his operation and we would have thought that the amount of pain he is in would have improved a bit more than it has. We still hold out hope that this will not be a permanent thing, but it is seeming less likely as time goes on with no great measure of improvement.
This week we attended the funeral of Brett's grandmother which was very sad and very moving for us all. Fortunately the kids got to see her and share jokes and sing songs with her just before her passing. This has helped them alot to think that they made her happy.
And in a rollercoaster week, yesterday we got more news about Seth's wish. The "Make a Wish Foundation" has booked us the biggest boat in the Whitsunday's a 52 foot cruiser that looks amazing and is named "Brazilian Beauty". Seth was so excited - it was priceless seeing his face when he saw the pictures. He is planning many an adventure on board his boat and has already picked out his room (it has it's own tv and dvd player). It will certainly be a week highly anticipated and remembered for the rest of our lives. I am glad Brett is the one with the boat license and I will be the one able to relax!!!

Roid rampages

Seth has been to hospital twice this week, twice last week for treatments. He had his last needle on Tuesday which was great. The steroids are taking a toll on him this time around and he is swinging wildly from cranky, to crying, to cheeky to exhausted in the space of seconds. He is really tired all the time and just lays around with no energy. This is the first time throughout the whole treatment I have seen this utter exhaustion from him. He has put on weight again and has the most gorgeous chubby cheeks and tubby tum. He plans all meals we are going to have and accompanies me to the shops to make sure I get all the things he is craving and is my little cooking buddy. Food is our life at the moment and if the craving isn't satisfied, he obsesses over it and talks about it non stop. Chicken taco's tops the list with twiggy sticks a close second again. It is nothing for him to eat two breakfast's, munch on snacks all morning, eat 3 sandwiches, munch all afternoon then eat more than his dad for dinner and top it off with a couple yoghurts and drinks of milk after dinner. A funny thing we have noticed with these steroids is that he chatters really quickly when he talks - like he is on fast forward. The steroid dose dropped as of yesterday and he will be finished in about a week and I am beginning to see a slight difference in his energy levels already.
Seth needed another heart echo done today before he had his next dose of Dauxorubicin and Vincristine which is the red one that take an hour and a clear one that takes 10 minutes to go through his line. He seems to have handled it well so far and he has one more lot of those two before starting a new block of different chemo. We will get a week's break between these two lots and I am really looking forward to staying at home as the next chemo is 4 days a week back and forth for a couple weeks, but hopefully I will be able to go to Campbelltown for 3 of those 4 days.