Sorry, edit to last post...

Seth is not having his 6 hour chemo on Thursday. He is having 3 different types of chemotherapy,one will take about 10 minutes and is clear, one will take about an hour and is red and turns his wee red and one being the big fat needle that he hates. We haven't told him yet as he will just get anxious about it and there is no need for him to worry just yet. We will tell him Thursday morning first thing so he can prepare himself, but not spend too much time obsessing over it.

New round of chemo has begun

Seth has begun his third round of chemo as of Wednesday last week. It starts out with strong steroids and his appetite is already increasing, along with his mood swings.He will be gaining weight and be getting a moon face and chubby tummy again. We went to Westmead today for a heart echo exam and everything looks healthy to begin the chemo on Thursday. Thursday is a round of cyclophosphamide which takes 6 hours.
Brett has had his third and final operation on his back as of Tuesday last week, and he returned home Saturday afternoon. He is recovering well and we will know once the post op pain goes as to how bad any nerve damage might be. Merry christmas to all and happy holidays. Here is to the end of 2010 and hopefully 2011 will be a better year for all.

Final methotrexate done new phase begins

Seth finished his final Methotrexate treatment yesterday. His levels must be 250 or less to leave and his morning count was 360. His afternoon count, however was 240 so we just made it out of there around 4:30pm.


This final one affected Seth the most. He was quite ill with it and even the anti nausea medicine didn't help him out very much. They came up with another medicine which seemed to help out a bit more so he picked up a little for a few hours and became his normal cheeky, energetic self.


Unfortunately, Seth had trouble keeping down water, so he couldn't help flush out the chemo and we had to rely on the drips and medicine to flush it out which is why we just scraped by.


We had R2D2 visit with Luke Skywalker and Batman among other characters which was a nice distraction for him.


The next round of treatment is the most intensive treatment he will undergo. He begins with a bone marrow test, a heart echo and steroids. The steroids are much stronger than the ones he first began and he will again become like a little buddah. He has to go through 4 nasty needles in the butt and about 6 different types of chemo. There will be lots of trips to Westmead and Campbelltown and will be a very busy treatment. Seth's blood counts are expected to drop quite dramatically and it is expected that he will get quite sick on this protocol. There will be many transfusions and many delays whilst waiting for his counts to come up.


The good news is... once this is over and done with, he should get his central line taken out and officially go onto maintenance chemotherapy which is all oral.


Unfortunately, the timing to begin coincides with Bretts next op on the 14th Dec, so there is a bit to juggle before Christmas comes and the Westmead clinic shuts down for a small break.


Seth had a difficult night once home, he vomited a couple times and his temperature went up to 37.6 (once it hits 38 we have to rush to hospital). He kept having bad dreams and didn't get much sleep. His temp was at 37.3 this morning and has been going down since (which is wonderful). He threw up this morning, but has felt like breakfast and so far has kept it down. I have him on anti-nausea medicine at home and hopefully that will help him get through it.
The final tally for the money raised for Cure our Kids by Picton Public School came to $14,613.55. What a wonderful effort from a wonderful community and school. Thankyou.

Third Methotrexate done - one more to go!!!

Seth and I returned home last night around 6:30pm after his third Methotrexate treatment. We were lucky enough to get a bed at Camperdown Ward (which is the cancer ward). We shared a room with a lovely girl who is 12 years old. She also has ALL, however she has high risk and has been having many problems due to the high dosage of chemo that she has to undergo. She spent 9 weeks in ICU and her muscles wasted away and now she is in terrible pain as they try to straighten her legs and build up the muscles so she can learn to walk again. This is just one thing amongst many problems that she has had to endure since her diagnosis in March 2009. She still has her central line, undergone bone marrow transplant, has a feeding tube, colostomy bag and so on.
I also found out on this trip that a couple who spent time with me when Seth was first diagnosed lost their only child a couple months ago. I ran into them from time to time when visiting the clinic and they kept me updated on his progress. I hadn't seen them for a while and I was hoping to find out that he fought his way out of ICU, but unfortunately, he didn't make it. He was 12 years old and his parents spent their entire year in hospital with him only to go home without him. He had ALL and AML
I was also speaking to a mum who has been in hospital with her son since June. She hasn't left his side, hasn't returned home not once. He also has ALL high risk.
All I can say is that no matter how bad you think youv'e got it, there are people - good people - out there doing it tougher. Seth has just flown through his treatment with little side effects. His energy and exuberance is phenomenal. This round of chemo hit him a little harder and he spent the entire time in his bed quite lethargic. He threw up once and needed to be on the anti nausea medicine the whole time or he got very queasy. He was off all food and drink. He had a painful tummy which the doctor thinks might be mucositis (ulcers) through his gut.
Today, he is running around, driving me crazy with the amount of energy he has - he has been jumping on our couch, causing fights with his sister and getting up to all kinds of mischieve. I can barely keep him still today. I hope he is able to keep sailing through his treatments as the most difficult one is still to come. It is pizza night tonight - his treat for getting through his chemo - he always craves pizza and we get it for him the night or the night after he gets back from hospital. I will explain the next round of chemo when I update next.
Thanks for those prayers everyone and Uncle Joe from Saskatchewan - thankyou for all your postcards they are really enjoyed by us all.
I have posted a couple of photos of the Methotrexate and linked the newspaper articles about the head shave which is now getting close to $13,000 for Cure our Kids.

http://www.wollondillyadvertiser.com.au/news/local/news/general/hair-there-and-everywhere/1999613.aspx

http://macarthur-chronicle-wollondilly.whereilive.com.au/news/story/camp-quality-puppet-show-at-picton-public-schools-fundraiser/

Shaveathon a HUGE hit!!!!

The school raised a bucket load. They raised nearly $5000 for canteen, nearly $700 just in gold coin donations for the camp quality puppet show (which is free, but they wanted to give a donation), they raised nearly $11,000 for cure our kids – with more donations yet to come once there was “proof” that they didn’t back out of the shave. It was such a special day and the place was buzzing. There were 4 shavers, firstly the principal, who let Seth and Taylah have a go at cutting her hair. She cut her hair into a Mohawk and strutted around like that whilst everyone else got their hair shaved – an office lady Mrs Stephenson who put so much work into the day, Mrs Edwards who is a mum and the mystery shaver was another teacher who had not been without a beard in many, many years. He shaved his head and his face. When they had finished, the principal went the rest of the way, and then she got the shaving cream and the razorblade out and went the extra mile and had her head razored.
They told me that all the local businesses have been just amazing promoting the shave at their shops and collecting money for cure our kids. There was a couple of businesses who donated ipod’s for a raffle and one business who knows one of the St George Dragons players personally (Ben Creagh for those in the know), and got Seth a signed jersey – which delighted him to no end. There were 4 hairdressers that closed their business for the afternoon, so that they could be there to shave.
Cure our Kids was represented by a lady called Katrina and she said that she has been to thousands of these events, but none that had such an enthusiastic vibe about it. We were nearly going deaf with the kids chanting “shave, shave, shave, shave” and when Seth was up shaving they were chanting out his name, and when Taylah was up shaving they were chanting out her name. Just incredible and something I don’t think anyone will ever forget. One of the parents owns a transportable coffee business and he donated all the money he made to cure our kids – so that has to be added up as well.
Seth was well represented by his family, with 2 of his great grandparents, all 4 grandparents, 2 aunties and one uncle came along to support him and the school. Taylah raised nearly $600 for the charity as well, so that was a good way that she could contribute.
I think that there will be a huge write up on it in the paper, as the journalists from the Advertiser and the Chronicle were present. Cure our Kids will be flashing it all over their facebook page as well if you want a further look. Katrina said that that amount of money will keep them going for another 6 months worth of charity work so that is quite overwhelming. And I got spoilt with a big bunch of flowers – which I am thoroughly enjoying.
I have to tell you that for all our human faults, there are so many beautiful people out there that are just so inherently good. My faith in mankind has been utterly restored once again after seeing the outpouring of kindness and goodwill. One child came up to us after the shave (nervous as all get-out) to tell us that he was very sorry about our son.
The puppet show was great too. It gave us all a belly laugh and it was really the first time that the kids have seen Seth for many months and they all kept waving at him and calling his name – he got very shy, but I think it broke the ice for him. The principal told us that the kids were so interested in cancer and had so many questions and they have really been showing a lot of interest in the whole thing and it shone through on Friday, just how encouraging they are. Seth’s class has a special chair set aside for Seth and the students bring in a bear from home and they put their bear in Seth’s chair – so sweet. The school is so supportive and caring, I just can’t say enough about the school or the Picton community. I wouldn't want to live anywhere else, or bring my children up anywhere else. You just can't get better than the support we have been shown by so many. What a horrible disease cancer is, but it brings out so much good in people and that, I can say, is a blessing.

More methotrexate coming up

It has been a while since I have updated. Seth went into hospital last Monday for his next round of High Dose Methotrexate. The hospital was packed sadly and we got a bed in the Variety Ward which is for children with highly contagious diseases. Whilst this gave me a bit of a shock, I was told that Seth would be put at no risk and the children who are contagious are completely isolated in their rooms. They said they are one of the cleanest wards around, because they have to be so super hygenic. So, once again he got hooked up on the Monday night for his drip, Tuesday morning they began the chemo and gave him another lumbar puncture. On our way out to get the lumbar puncture, we were told we were moving to another ward. We then went into Clancy Ward which is for kids with digestive troubles. We went through 3 room mates in 2 days in that room. Wednesday morning they took him off the chemo and began the process of flushing the chemo out of his body. Thursday morning, Seth had flushed out the chemo enough for us to be allowed home. Friday morning we woke up to Taylah running into our room yelling that Seth was throwing up. He was much better once we gave him some medicine for the vomiting and has been doing really well since.
The sad thing about this last visit was that each ward we went to, they were filled with kids that had cancer. Camperdown (which is the cancer ward) was bursting at the seams and the other 2 wards I went to seemed to be filled with these poor little cancer kids. There are just so many.
We received an official invitation to Seth's school for the upcoming head shave. They now have 4, possibly 5 teachers shaving their heads in honour of Seth. The school is trying to raise funds for a charity near and dear to our hearts called "Cure our Kids". There was another half page write up about the fundraising head shave which is being held this Friday 12 Nov in the local paper mentioning how the children in the school are raising funds in honour of Seth. It is very touching that so many people care so much about our little boy and want to contribute any way they can.
Seth is of course the guest of honour and he and Taylah will be making the first cut. It is a very exciting thing for Seth, although, now it is drawing nearer, he is getting a little nervous about being in front of the whole school.
We were hoping to send Seth to school this week, but there are still new cases of whooping cough being reported daily. We may not be able to get him back until next year if this keeps up.
Seth has to go to Westmead tomorrow (Friday) for a blood count and paperwork for hospital admission. Then, if they have a bed, he will be back in for more methotrexate on Sunday night.
Brett and I are getting very tired through this stage. I am not getting much sleep at hospital because he has about 4- 5 bags of fluid up at once, the drip machine keeps beeping all the time. When you are in a room with other patients and their drip macine beeps as well, there is not much sleep to be had! They also give him a drug to make him wee alot. So we are up and down all the time filling up bottles so they can be measured.
I will keep you posted after this next round of chemo and hopefully remember to get some photos of all the lines and bags of fluids he has to have up.

Low Risk Category

Last week Seth went to Campbelltown hospital on Wednesday and Westmead on Friday. It was this friday that we got the news we have been waiting for. Seth has been put in the Low Risk Category. This means that he can cruise along with normal strength chemotherapy treatment. If he was high risk, it would have meant that he would need a bone marrow transplant straight away. If he was mid risk, he would have to go through some pretty heavy chemo treatments. We have been waiting for this news and it is such a relief to finally get that low risk category. It feels like we can breathe a bit easier now and just get on with things. Seth was due to go to hospital today (Sunday) but they didn't have a spare bed so we ring tomorrow and find out if they have a spare bed. He needs to have his second round of high dose methotrexate.

First High Dose Chemo Done!

We took Seth into hospital on Sunday for his very first High Dose Methotrexate Chemotherapy and came home Wednesday afternoon. When we arrived at hospital Sunday night, they hooked him up to a double therapy drip - one normal saline, one with bicarb. The bicarb is to heighten his PH levels so that they can protect his body from the chemo drug. Once he was at the correct levels which was around 8am Monday morning, they started the Methotrexate which is a clear rich yellow coloured liquid. Similar to if you put yellow food colouring into water. This runs for 24 hours. It made Seth feel quite nauseas and he was put on medication to stop him from vomiting. He also suffered a couple bouts of diahorrea and some quite painful reflux. Seth has become extremely sensitive to smells and tastes which makes meal time hard. He was then given other medication, that seeks out the methotrexate from the cells and flushes it out of his system. He continues on the double therapy treatment until blood test results show that the levels of the methotrexate are low. Once that level has been reached, they can stop the drips and send him home. His blood counts should be dropping in about a week, when he will once again lose his ability to fight viruses and bacteria and he will be needing more transfusions. This is such an intense phase of treatment for him. I hope it treats him kindly.
He has to keep up with his oral chemo treatments throughout this intense phase as well. It is expected that he will get Mucositis from this treatment which is a horrible side effect. They get ulcers from their mouth, all the way down their digestive system. With any luck, he won't be too badly affected. He has 6 rounds of this treatment to get through before moving on.
Even though we have finally heard those magical words remission, we have had to explain to Seth that, yes, the doctors can't find any cancer anymore, but if they stop giving him his medicine it will come back again.
He has to go to Campbelltown for a line flush on Wednesday next week, Westmead clinic on the friday after that to book in for his stay and back in for his next dose of Methotrexate on Sunday 24th October.
He is still unable to go to school as whooping cough is running rampant there still.

That sweet, sweet word REMISSION!!!

Seth went to Westmead yesterday and the doctors finally spoke that word we have been waiting for. Seth is in remission!!!!! Officially there is one test result to come called an MRD that can pick up tiny amounts of left over cancer cells. If this is clear we are all good BUT he has gained the remission title as they cannot find any traces of Leukaemia in his bone marrow. So, so happy!!!
After we recieved that good news, we got another phone call from the "Make a Wish Foundation". They will be granting Seth his wish (which is to sleep on a boat in the queensland islands and fly in a helicopter). I must say, yesterday was a very happy day in our house!!
Tomorrow Seth has to go to hospital to begin his methotrexate chemo. He should be there between 3 - 5 days if all goes well. His hair is starting to thin out alot again, I assume from the oral chemo he is on, but he is still styling away with copious amounts of gel so I think we will leave it for as long as we can.

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.

Still in Hospital

Seth is still in hospital unfortunately. Initially his Temp kept spiking and the hospital policy is to keep them in for 48 hrs after the last high temp. Well he was due to come home last Saturday night but his temp went up and then it was up Sunday and Monday but has been okay since.
The problem now is his blood counts. There are cells in your white blood cells called neutrophils which are there to fight any bacterial infection and Seth basically has none as the chemo treatment has killed them off and as yet they haven't grown back sufficiently. The Doctors are a little concerned as he hasn't had chemo for a few days and his levels should be back up.
Anyway, the short version of the story is they wont let him come home till his counts are at an acceptable level and the poor little guy is going stir crazy and is hooked up to a drip for fluids and antibiotics 24/7. He is starting to get quite moody.
He is in Campbeltown paediatric ward at the moment but they are not as well set up as Westmead, so, if his counts are still down tomorrow they will transfer him and hopefully he will be a little happier. Westmead is also better set up for Parents so Ali will be a little more comfortable as well.
The bed they provide for parents was designed for hobbits I think as even Ali's feet are hanging of the end of it.

Anyway, as a result, his final round of chemo for this phase of his treatment keeps getting put off until his counts improve so hopefully it will happen next monday and hopefully Seth wont be in for to much longer.

I will update you further when I know more.

Hi everyone. Well its been another huge week for us and Seth. The poor little guy was at hospital all day thursday for chemo and a blood and platelet transfusion and then that night he came down with high temperatures and we had to take him back in at around 8pm. He will be in hospital till at least saturday night depending on how he goes with the treatment they are giving him. Initially they have him on a course of antibiotics through his central line and they also have taken blood which they send of to the lab to see if they can grow any nastys on it. If it all comes back clear then he should be right to come home after 48 hours of antibiotics. We had been warned that there could be alot of extra trips into hospital with temperatures etc, but luckily this has been the first time we have had to rush him in at night so far. Anyway if all goes well, he will be back home soon and then we will be back into westmead on monday for another big one, as Seth will need to go on a 6 hour drip which also marks the end of phase 2 of his treatment and then we get a 2 week break with no planned hospital visits. After the 2 week break he will then have another bone marrow test and we will find out what risk catagory he will be in and we are literally holding our breath. Anyway, we will update again soon.

Final week of treatment (for now)

We are now in week four of our four days of chemo for four weeks. Yeah!!! Unfortunately we don't get a home visit tomorrow, but at least we only have to go to Campbelltown for the treatment.
Seth is really flat now, it has really started to knock him down a couple of notches. He still has moments of energy but they are less and less and don't last too long. Still, he is getting out in the sunshine and riding his bike every now and then which is nice to see.
Taylah still has high temperatures, so we are still hoping and praying that he has another little miracle to pull out of his hat. He is suffering a bit with feeling nauseas even on the anti-nausea drugs, but at least he is keeping down the little amounts of food he is eating. His appetite is in complete contradiction to what it was when he was on steroids. He has now lost 3kg's and is almost looking like the boy we started out with. His hair is growing back already, although it is soft and thin.
Today we arrived at hospital at 8:30am for a lumbar puncture and chemo. We left around 3pm for home, so another long day! Everything went well and we have found out that Sienna is a perfect bone marrow match for Seth which is wonderful news. We aren't telling her because she will only stress out that she has to have more needles etc. Hopefully we won't need it, but it is nice to know we have such a close match in case we do.
Seth's red blood cell is very low and his platelets are falling quickly again. Our plan is to have a transfusion of both at Campbelltown on thursday. Well, another big week to get through, and we are thankful for small mercies right now. We are still receiving cards from around the world with messages to uplift and they are much appreciated and at times, much needed. So thank you to those of you who send cards and gifts from around the world (and of course across Australia).
I will update again after Seth's transfusion on thursday, unless something happens before then.

Platelet transfusion

Same old treatment this week. Chemo, Monday - Thursday. This treatment seems to be a little harsher on Seth than the previous chemo drugs. He is more tired, has lost his energy this week, threw up his dinner last night and feels nauseas most of the time. His blood count took a dramatic dive this week and he required a platelet transfusion. This is a pale apricot coloured liquid that is administered via gravity. It only took about 20minutes - which is quite a difference to getting the haemoglobin transfusion which takes around 3 hours. We were lucky enough to be able to get this done at Campbelltown Hospital on Friday morning.
We are looking at the same kind of week next week, however on the Monday Seth will be getting another lumbar puncture.
Taylah is now getting temperatures. She has a urinary tract infection and conjunctivitis. I am hoping that she doesn't get the respiratory tract infection like Sienna had - we can only hope again that Seth will give us another little miracle and not contract Taylah's illnesses.

Week 3 and still going strong - our miracle boy!

Seth went to Westmead again on Monday and fortunately only had to have a blood count done and his dressing over his central line changed. Sienna has been very sick all week with a respiratory tract infection with high temperatures of 39.5 staying with her for the entire time. We were holding our breath just hoping Seth didn't catch it. The doctor warned it was contagious and the nurses believed it was inevitable that he would get it. However, our little guy has sailed through yet another trial and he has not contracted the rti. What a miracle!!! I can only put it down to the many prayers that are being made the world over.
We had our hearts deeply touched this week, with many cards being delivered from the UK and Canada. The most touching and humbling card we received was from an elderly couple from Canada (aged 89 and 84) who went to the trouble of exchanging their money into Australian dollars and hiding it between the card they sent. We were blown away that the news has spread so far and wide and that so many people are keeping track via this blog. So thank you to all who have kept up their prayers and sent their thoughts to us via cards and emails. Those prayers have definitely been put to good use this last week and has given us a little miracle.
Seth had the nurse visit today, we are off to Campbelltown Hospital the next two days and he will more than likely need a platelet transfusion as his platelet count is coming down extremely quickly. Still no news on the tissue typing and the marker. Hopefully next week. Seth is still feeling nauseas on this lot of chemo, which thankfully can be controlled quite well with more medication. He is in high spirits, but hasn't returned to school yet. Hopefully when this intense treatment is over he will return to school for a little while at least.

13 hours too long!

It was a huge day for Seth today, he left home at 6am and got home just before 7pm. Way too long for our little guy to be waiting around. He arrived at hospital at 7:30am and didn't start his procedures until 5 hours later. He had a lumbar puncture with the chemo put into his spinal fluid, then chemo through his central line, then he had three and a half hours of blood transfusions.
We still have no news on the tissue typing (to see whether any of us are compatible bone marrow donors) and still no news on whether Seth has a special marker in his blood which means they can find leukaemia cells in smaller quantities and pick up leukaemia cells earlier.
Seth seems to be responding well to the chemo, he vomited Sunday morning, but has been okay since. He is actually a little bit hyper and we are wondering if it may be related to coming off the steroids. He is slowly losing his chubby cheeks and his stomach is almost back to normal.
Luckily, we have a nurse coming over for a home visit tomorrow, so he can stay home, then we will be heading over to Campbelltown for treatment on Wednesday and Thursday again.

A day of treatment at home!!

We had the nurse come and visit us at home today. Seth has taken well to the chemo again so far. He has just had some nausea, but the meds to combat that are working well. We are off to Campbelltown Hospital for the next two days for treatment which is a nice change from going to Westmead all the time. We have uploaded some photos to view including the buddah shot.

Big Day Today

A very long day for Seth today, he was hooked up to a drip for 6 hours as part of his chemo. He did really well and was very patient. We left home at 7:15am and arrived back home 11 hours later. He didn't complain once.
He has a very intensive 4 weeks of chemo ahead of him - 4 days of chemo a week for 4 weeks via the central line and a chemo tablet every day. Luckily, we can get some of his treatment at Campbelltown Hospital which will save us a lot of time and a lot of petrol.
A couple of Bulldogs came for a visit to the clinic promoting Camp Quality today. Seth was very quick to tell them he was a Dragons supporter and Brett had a nice time promoting the Dragons.
Seth is starting to lose those gorgeous chubby cheeks and that big fat tummy since being off the steroids. It is happening quite quickly and his appetite is finally decreasing with it as well. We have some great shots of him at his biggest to upload. He looks like a little buddah.
He is now having new chemotherapy drugs so we aren't sure how he will react with these. One of the drugs has a tendency to cause fevers, so we will be on the lookout for them as we have to get him to hospital within the hour. Another can cause bleeding from the bladder. Hopefully, we sail through these next four weeks without too much drama.
We are still waiting the results of the tissue typing to see whether any of us are bone marrow matches. We got a call about some information they were missing today, so I know they are working on it and we should hear the results by next week.

We begin the next stages of chemo.

I have spoken to our oncology nurse that takes care of all the oncology kids who are outpatients. She has contacted Seth's oncologist on our behalf and has found out some answers for me. Seth will begin his next stage of chemo on Monday. They would be making the same decision whether he was in remission or not in remission. The small amount of cells they did collect from the marrow, although still too small to give us a definite all clear, shows no signs of Leukaemia. Phew...
The nurse (Daphne) met me at Campbelltown Hospital today to introduce us to the Pac's team there. They are some wonderful nurses and I am just so relieved to be able to get some of the treatments there rather than have the big commute to Westmead all the time.
Campbelltown Hospital has liased with Westmead and have all of Seth's information now, so we are able to get blood counts, blood transfusions and some of the more minor chemo's at Campbelltown. If Seth get's a temperature, we are now able to take him to Campbelltown where they can begin treatment within the hour (which is important), rather than us getting him to Westmead which takes longer than an hour to get to. If he requires more treatment, they will then transport him to Westmead from there.
This is a huge relief and a big help as his next stage of chemo is a 4 day treatment. We begin Monday at Westmead for a 6 hour drip which Campbelltown aren't authorised to give him, Tuesday they send a nurse to our house, Wednesday and Thursday, I take him to Campbelltown for them to give the chemo. Then we start all over again the following Monday along with a Lumbar Puncture. This treatment goes for 4 weeks. Then we will be getting close to day 79 and we will be getting his prognosis.
Seth went to school for the first time today for 1 and a half hours. The nurses had been out to educate the teachers and his class and I got a call on Thursday advising me it was now time to send him back to school. We had tears in the morning as he was worried about how different he looked and about the kids in the playground being rough with him. So, we made a deal, I stayed in the car with him till the bell rang, then I walked him to his class once everyone was out of the playground. He came out of school loving it and wanted to go back tomorrow. I had to disappoint him with the news that it was Saturday tomorrow. It is a bit scary sending him out with all the germs that float around schools, but they reckon it is the right thing to do. I just hope it does him more good than harm. So, I will hold my breath again and hope he doesn't pick up anything harmful. We are to take it a day at a time and if he is feeling well, we send him for a couple of hours so he keeps contact with his class and keeps up with his school work.
We will keep you posted as to how we go with Monday's treatment. These particular chemo's have a tendency to induce a fever, so fingers crossed he comes through them okay.

No Remission Still.

I just don't know what this means. Good or bad??? Day 33 is so important to be in remission and yet it is now day 42 and they still can't give us remission. He still doesn't have enough cells to give a reading. I am so upset, confused and deflated. Just not knowing is killing me. I have been trying to find out what it all means, I am waiting for a call from a doctor of some sort to explain what this means. It is called Hypocellular. Again...just waiting for news of some sort. I know alot of people have been waiting to hear what the results are this time and I will post what this all means once I know myself. Be back soon with some answers I hope.

No Remission....YET.

We didn't get the news we were hoping for today. They can't give Seth the all clear yet as even though his blood counts are increasing, his bone marrow hasn't grown back enough for them to tell whether any leukamia is left to grow back. So... we have to be patient and wait another week to see whether the chemo has worked.

We were told that it wasn't an expected reaction, but it also happens now and then and although it isn't nice to have to wait, it also isn't devastating news. It just happens to some kids, they don't know why and each child reacts to leukaemia differently and to the chemo differently. Patience is a virtue!

We have the rest of the week off which is a blessing as Seth is turning 7 on Thursday and Brett's birthday is on Friday and we are just soooooooo tired. I can't remember being so tired ever. We will be going back on Monday for a blood count and Wednesday for another bone marrow aspiration. Hopefully we get the good news on Thursday next week that he is in remission and they will start him on the next phase of chemo.

They said that it is very, very important with T-cell patients that they are in remission before starting the next phase, so they are being very vigilant and making sure things are done by the book and are not rushed through. I feel like we are in very safe hands with our doctors.

The final needle and what a mess!!

Today, Seth had his final needle and the plan was that whilst he was under GA for his bone marrow and lumbar puncture they would give him the needle. All was going well and Seth was put to sleep no trouble (we had to record it on our phone for him to look at later so he could see how quickly he falls asleep - very cute). They wheeled him out after the procedure and tell us that they haven't given him the needle because the pharmacy didn't have it ready. We were so upset, because we had told him over and over that he wasn't going to have to feel the last needle. That was the only good thing to look forward to today. We tried to keep him asleep for as long as possible in the hope they would get the needle to us before he woke, but alas, no luck! He popped his bald little head up about 15-20 minutes after they wheeled him out and the first thing he said was "I've had enough of sleeping". We were not looking forward to telling him the news. He was so sad and our hearts where just breaking. So, we had to hang around for another hour until the needle came, then we had to hang around another 45 minutes to see if he gets a reaction. We have to be back at hospital tomorrow at 9:30am for a new set of chemotherapy drugs. Tomorrow's chemo will take 6 hours to transfuse and hopefully he doesn't end up having a bad reaction. We also get the BIG news as to whether he is in remission. Hopefully he is and we can continue as planned. We added the video of him going to sleep. Very cute.

Seths shaveathon

Today we had the shaveathon that Sethy had been so looking forward to and as you can see from the photos we had quite a bit of fun with it. We put everyone's names into a hat, came up with some different hairdo's and Seth got to pick a name and a hairdo for each victim. We had cuts like friar tuck, Mr T, mohawk, mullet to name a few up for grabs. We will upload the rest of the photos to facebook soon for those that are interested. We have had a lot of support from a lot of people, some people who have never even met us. We are very thankful for their support and also for Jay who came up with the idea and turned it into a fundraiser. We would like to thank everyone who shaved their heads and turned something that can be quite a daunting part of cancer into something that was happy and fun. There was an awful lot of laughter at our house today. It was lovely to meet up with Chris. E and his wife Tina and their gorgeous daughters after not seeing Chris for many years. They have rustled up support from Tina's family in New Zealand and Tina's dad was even shaving his head today. We are so blessed to have so many wonderful people willing to help any way that they can.
It hit me today that he really does have cancer, now that his head is shaved, he resembles the kids with cancer now. I suppose I can no longer deny it now he looks the part. It was much harder to believe when he looked normal and just seemed a bit tired.
Well, we have had a busy few days, with hospital on Friday, Annie's 60th on Saturday, Head Shave today and we are at the hospital from 7:30am tomorrow for bone marrow, lumbar puncture and chemo. It is day 33 of treatment and Seth is expected to be in remission at this stage. So, we will be holding our breath and hoping that all his test results come back as the doctors expect so we can continue with the planned treatment. The doctors have stressed that to them day 33 is a very important day for them in being able to predict Seths prognosis, so we want good news.
A couple people have mentioned that they have had trouble adding comments. That problem has now been rectified, so please feel free to add your comments.

Another day, another needle!

We went back to the hospital today for more chemotherapy both needle and through his central line. Thankfully today was the last day Seth has to go through the pain of the needle. We are back in the hospital bright and early (7:30am) on Monday for another bone marrow aspiration, lumbar puncture and chemo into the spinal fluid. They will also give him his final needle whilst he is under the anaesthetic so he doesn't have to go through the pain one more time. We are grateful for small mercies. He is weaning off his steroids and will be off them completely in a little over a week. Then his chubby tummy and cheeks will begin to deflate, his appetite is expected to go down to next to nothing and I will be begging him to eat. He will also be starting some new chemotherapy drugs after the Monday, so hopefully he handles them just as well as the 4 he has been on already.

Seth got a really exciting package yesterday from the St George Dragons after Annie (Cheryl) wrote away to the football team explaining his sickness. He was surprised with a beanie, a t-shirt, stationery set and a card. He can't believe how many people care about him and want to help. We have a photo uploaded of him wearing his t-shirt and beanie.

Seth drew a thank you note for the ladies at Annie's work who put together a raffle to raise money for him. So we have uploaded a photo of that as a thankyou for everyone who has supported him and us.

We took Seth to see Karate Kid at the movies yesterday as a special treat because his sisters were away at a birthday party. He loved it. It was a great movie for both adults and kids. It was nice to do something fun for him and take his mind off his sickness for a while. It is good for the soul to do something normal. I no longer take normal life for granted. Life can change so quickly and then all you crave is "normal" again.

You will also see some photos of the clown doctors who came into Seths room a couple times during his hospital stay. They are a whole lot of fun for both parent and child. We brightened Seths room up with a whole lot of balloons, thanks to Shane and Dan (Seths uncle and aunty). It was a real highlite for Seth to muck around twisting all sorts of weird and wonderful shapes.

Another visit to the hospital today but this time with the whole family. We all had to give blood so they can test us for compatability in the event that Seth may need a bone marrow transplant down the track. What a drama with Taylah and Sienna the poor things, as you can see by the photos they were not real happy about it but they understand that it may eventually help their brother. They were given Angel Cream on their arms, which numbs the skin so they can't feel the needle. However, they both had an allergic reaction to the cream so we had to wipe it off after about 15 minutes. Sienna's skin went red but Taylah had a bigger reaction, with raised welts and tiny blisters. Luckily the numbing had worked enough to get them through with only a little pinching feeling. Although the drama queens were out in force today and Taylah had to lay down so she didn't faint and Sienna screamed when she saw the needle. It was a big deal for Sienna and she hasn't stopped talking about it or showing off her wiggles bandaide to anyone who will look and listen.

We had expected to be in for a big day as Seth was quite pale and a little tired and we were expecting his red blood cells to be right down which would have meant a blood transfusion but he was right on the borderline and the doctors suggested we wait till Friday and see how his counts are then. That was a relief as Sienna was sick of being at the hospital by the time she had done her thing and when Sienna is bored, mischief is on it's way!

Seth's hair is thinning out and getting a bit patchy, so the head shave organised by Jay on Sunday comes at a good time. Watch this space for photos of the bald boyz on Sunday. Should be fun. Seth is really looking forward to it which is a really positive thing.

I have uploaded a photo of the quilts that were donated to the kids.

We had a good day today, we were expecting to have to stay for a long visit as we were told he would probably need a transfusion, but his counts weren't low enough. We only had to have the jab (which he absolutely hates, but deals with so bravely) and the tow chemo treatments through his central line. We were out of there late lunch time after getting there at 9am - that is a quick day.

They had Seth booked in for a lumbar punctur and bone marrow aspiration on his birthday (15th July) and for the first time during all of this he dug his heels in. He just refused to be in hospital on his birthday (don't blame him), so they changed it to the 12th for him which was great news.

Seth is getting the chubbiest, most gorgeous cheeks and such a round little tummy. It is funny to see our normally skinny little kid grow and grow and grow. He has such a huge appetite at times and craves the funniest things. The tops three foods at the moment are: twiggy sticks - he just can't get enough of them, talks about them all the time, would have them for breakfast if I let him. Doritos (must be in the red packet) and chicken tacos - he ate about 5 of them, we ran out of them and he was still after more to eat. One morning he ate 3 poached eggs on toast! I don't know how he doesn't throw it all up.

He is starting to have difficulty taking his pills, so we are now crushing them and mixing them up in chocolate yogo. I thought I would try something different and put them in some yoghurt, but that just made him throw up. So, we are sticking with the yogo. I don't know what I will do when he gets sick of having that 3 times a day!

We had a real highlight last week when Seth and the girls recieved a beautiful quilt each. A wonderful charity sews these fantastic quilts and each child in oncology gets to choose one for themselves and one for each of their siblings. The kids love them, they line up on the couch with their own quilts over them and watch tv all nice and snug, and have them on their bed every night. Such wonderful charities are involved at the hospital. I will write more about the other charities at a later date and will post photos of their quilts as well.

Over and out.

Routine visit today to check his bloods etc. Everything came back okay today and he only needed a monster needle in the butt (poor boy but no tears). Medications are working as expected but he will probably need a full blood and platelet transfusion on friday as his haemoglobin and platelet levels are dropping quite quickly. He is doing okay considering as he is back to his lively cheeky self today which is uplifting for all of us. We have attached some photos of some of his progress so far and you can see how much the steroid treatment with the chemo has made him bloat....quite amusing really and there are some photos after his first surgery which show his central line which is basically a direct line to his heart for taking and giving blood and also for administering the chemo treatment.

Welcome

Today, Seth is doing well. We had a HUGE week last week... Tuesday we were at the hospital at 9am for a blood transfusion and a nasty chemo needle. We were back on Wednesday at 7:30am for a bone marrow aspiration, lumbar puncture and chemo into the spinal fluid. Unfortunately I gave Seth a drink of milk to take his morning meds at 6in the morning and we had to wait until midday until they would put him to sleep. It was a looooong day but I amused myself by kicking myself about the milk. I should've given him either water or apple juice. Won't be making that mistake again!
We were back in on Friday for another nasty needle (which he handles like a superhero) and two other chemo's through his central line.
We have been so blessed by so many people, particularly providing meals, which are so welcome after the long days at hospital. We have been given gifts of money and loads of presents to keep Seth occupied. All these things are so appreciated and welcome. Thankyou one and all.
So far we are heading into hospital on Tuesday for the nasty needle, I will be taking Brett into St Vincents for his scan and post op appointments to see how he is progressing (hopefully we will get the date for his next op too). Then I expect we will be back to Westmead for Friday for another round of chemo.
Over and out.