Seth made front page news!!!

Seth is now officially famous (so says he). His school is having a fund raising day for a charity called "Cure our Kids". The principal asked what charity I would like the money to go to and this was top of the list. They work endlessly for the families of kids suffering from cancer and you actually get to see and benefit from their good work all over the hospital. Anyway...We took Seth to school for a quick photo shoot with the principal and teacher involved in organising the day. I was asked to go so I could speak with the journalist. However, much to my extreme embarrassment they insisted on getting a photo of me with Seth and Taylah. I woke up this morning with my face plastered all over the front page of the paper. Seth thinks it's great which is what matters most, but I was hoping my 15 minutes of fame wouldn't come when I was recovering from major surgery (and looked like it too!!).

We have scanned and attached the article below fyi. Seth has proudly cut it out and has it in a plastic slip. He nor his sister seems to suffer from the same sense of camera shyness as I do.

Seth went to Westmead yesterday (Wednesday) for a bone marrow aspiration. All went well, and it was fortunate that they didn't keep him waiting all day. It was another early start for him. He had to be at hospital by 7:30am. We are still having trouble with his dressings. Not sure what they can do about finding him something to ease his skin. Even the tape we have been using to stick down the gauze has been causing a great deal of itchiness and inflamation for him. They have now started the oral chemotherapy which is a tablet that he has every day. Then he goes into hospital not this coming Sunday, but the one after to get his chemo. The stay should be between 3-5 days in length if all goes well. Seth is in high spirits and is full of energy at the moment which is nice to see. Hopefully he takes to this next lot of chemo well.

GFR test done.

Seth had another big day on Monday. He had to go through an all day test to measure his kidney function to make sure they are strong enough to take the next lot of chemo. The next lot of chemo is much stronger and could do some damage. The GFR test consists of a visit to Nuclear Medicine and something (not sure if it is a dye or what they use) is injected into a vein in his hand. After two hours they give him a blood test, then another hour another blood test and then another hour after that, another blood test. We don't have the results of the test, but we should get them next week.
Seth goes into Campbelltown tomorrow for a blood count to make sure he is ready to have his bone marrow taken and ready to begin the next lot of chemo. If all is well, he should get his marrow taken next week, and he will begin his oral chemo. The following week he should commence his IV chemo which means more hospital stays.
Seth has become allergic to the dressings used to cover the central line that comes out his chest. His skin has blistered and become red and inflamed and he is very itchy. We now have to change his dressing everyday using saline and gauze, until the skin settles down and they can trial different types of dressings on him.
On a positive note, the principal from Seth's school has contacted us and is organising a fundraiser in honour of Seth. The money raised will go to Cure our Kids which is a wonderful charity that supports families at Westmead extensively. The principal is going to be shaving her head along with another teacher who is involved in the organisation of the big day. Seth is going to the school today to have his photo taken with the principal for the local paper. He is pretty excited about the whole thing which will be held November 12. They have also organised a puppet show for the school that is put on by camp quality. They use life size puppets that are bald from chemo and they teach the kids about cancer, about kids looking different and about not being bullies. It should be a really fun day and it is something that Seth is really looking forward to. Once again, we are astounded at the support and kindness shown to our family.

New Phase

Seth had a big day at hospital on monday. Left home at 7am and got home at 6pm and he had his last lot of chemo for this phase of his treatment. We now have to wait 2 weeks for his bone marrow test but he has to go back next monday for a GFR test. This is basically a series of injections and blood tests to determine the condition of his kidneys to see if they can handle the next phase of his treatment.
This next phase is pretty full on and is spread over 60 days minimum and involves oral chemo everyday and after the first week he will have to be admitted to westmead for a special type of chemo called high dose methotrexate. This stay will be for 3-5 days and then he will get two weeks off with a blood test in between and then back to hospital for 3-5 days depending on his white cell counts and so on for a total of 4 big hospital stays.
Its a pretty full on schedule and the methotrexate they will be giving him is pretty nasty hence the need for kidney tests throughout and there are some pretty nasty possible side effects so we just hope and pray the little guy doesn't suffer too much with it.
We tryed to get him into school for a bit this week just for social reasons and because his school photos were on but the school rang and told us they've had cases of whooping cough, scarlett fever and measles going around so he wasn't able to attend which was a bit sad but I don't think he minded too much.
Anyway, more next week.

Counts are finally up

Hi, Seth had another blood test on thursday morning and the hospital got in touch with me on thursday arvo to let me know that his counts have finally reached the right level for him to continue with the chemo, so we are booked in for a big day at westmead on monday. This will be his last round and then 2 weeks later he will get another bone marrow test to determine his risk category. It is good that things are finally moving after he had to spend 18 days in hospital with a fever and low counts.
Seth is in good spirits at the moment and just happy to be home and getting back to some sense of normality. He has almost lost all of the weight he put on with the steroids and apart from being a little pale is almost back to his old self.
Ali's operation was successful and she came home yesterday and is getting lots of rest. She will be off her feet for quite a while and is still in a bit of pain but is improving each day. She was supposed to come home thursday but some scans showed that she had fluid on the lungs which was the start of pneumonia so they put her on some antibiotics and kept her a bit longer.

Anyway, not much else to tell at the moment, everything is going okay and I will let you all know how he goes on monday. Thanks to everyone who has sent messages of support, they are greatly appreciated.

Home at last

Seth came home finally on Sunday. They were not very keen to let him go because his counts were still not changing but Ali had to go into hospital on Monday for a hysterectomy (when it rains it pours), so they took him off the antibiotics on saturday night and monitored him all Sunday to see if his temps came back up which they didn't so they let him come home. He was a very happy little camper.
Since then his counts have continued to rise and he had a blood test today which came back good. His neutrophyls have hit the 0.2 mark and platelets and haemoglobin are on the rise so he will have another test on thursday and hopefully if they come back well he can go in for his final round of chemo for this phase next week.
Ali had her op yesterday and although she is still quite groggy and in a bit of pain, it all went well and should be back home for lots of rest on thursday meaning I have my work cut out for me which she is quite happy about for some reason.
Anyway, hopefully we will have more good news on Seth later in the week.

Home for a few hours

Today is day 16 of our hospital stay. Seth's neutrophil count is still below 0.2. We have a wonderful paediatrician at Campbelltown who is very kind hearted and sympathetic. He has kindly allowed us some time at home today for a few hours which will do a world of good. My mum has kindly offered to sleep over at hospital with Seth tonight so that I can get a decent sleep tonight. I am not sleeping well and it has caught up with me. Seth's counts are coming up ever so slowly and the oncologists at Westmead will not budge on letting him go before he reaches 0.2. So.... we wait and we wait some more. Seth has moments of rage, tears, hyperactivity and with the wonderful nurses at Campbelltown he has some pretty happy times too. The nurses at Campbelltown are second to none in their care, patience, kindness and humour. We didn't end up going to Westmead as there were no beds available and Seth wouldn't have been able to go to the cancer ward where all the entertainment is. So it was best to stay close to home. He is in virtual isolation as there are some kids around with Bronchitis so he needs to wear a mask if he goes out of his room (depending what sicknesses are going around the hospital). He has no immune system, so he is on a constant drip with antibiotics going through every day doing the fighting for him. He is otherwise well which makes it harder to sit around waiting. He hates the hospital food and is not eating much. He looks like our little boy again, with all the weight from the steroids completely gone now. His hair is growing back really well, although a bit fine and patchy in some places, he looks like our little man again.