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.