Home sweet home

Firstly I would like to thank everyone who comments on this blog and on facebook. It is so encouraging to know we have so much support from all around the world. Particularly to hear stories of successful bone marrow transplants!!
This week has been a rollercoaster again. Brett and I met with the Transplant Team on Monday - let me just say it was not the greatest moment of my life. They were extremely blunt and 90% of the discussion was about all the things that can go wrong, all the ways we could lose Seth, all the problems we will encounter along the way. We left that meeting in a dumbfounded daze. The next day for me, once I came out of the daze was very emotional as what they had said hit me full force. I don't want to go into all that they said as hopefully very little of it will happen. It has made me extremely nervous of what is ahead, but as they said, we are out of options. It is either do the transplant or take him home and watch him die. The one thing I cannot fathom is that if he relapses in the first 6 months after the transplant we lose him - there is nothing they can do. If he relapses within the following 6 months there is very little they can do and we will probably lose him. A relapse 12 months after transplant means they may be able to do something. Its hard to swallow - the risk is huge - this is an aggressive form that is known to relapse - I want the information, but I don't want to hear it.
Seth had some high temperatures this week so he was put on additional antibiotics and that seemed to do the trick. The fever broke and his counts quickly rose. On Wednesday they began another round of chemo - vincristine and steroids. As his counts rose the doctors took the opportunity to send him home for a short break, so Seth is home with us now - where he should be. He came home late Friday and he is not due back until Wednesday to undergo a lumbar puncture and yet more chemotherapy. He is very lethargic, quite pale but very content being home with his family and his dog Ruby.

Another week, another temp

This week has been full of highs and lows.
On tuesday Seth allowed me to shave his head as his hair was everywhere and starting to really annoy him. Afterwards, he was very subdued - I think reality hit him a bit harder that he is really doing this all over again.
Seth's kidneys were having difficult functioning on the antibiotics that were being given to him so the drs took him off it on Wednesday and we had a semi-normal day. Seth has discovered that there is a KFC and a McDonalds within walking distance from the hospital and although he complains of being tired and weak (an effect of steroids) he seems to gather the energy for a walk to get some chips! Amazing to watch him perk up when he is going to get the food he is after. We had a great day Wednesday when his uncle (Andrew) came for a visit and we took him for a big bike ride out in the sunshine and somehow ended up at McDonalds!! Fancy that!!! When we arrived we got a phone call from my aunt(Wendy), cousin(Roxanne) and cousin in law(Amanda) who had her gorgeous baby girl(Madison) with her. They ended up joining us at McDonalds and it was so so good to feel like a normal person visiting Maccas with family. We walked back after Seth was showing disgust at how long he had to sit around listening to the women talk. Luckily he had my brother for company so they could talk mens business. Once back in his room for a well deserved rest his other uncle(Shane) and aunty(Dan) turned up for a night of entertainment.
The next day, Seth wasn't feeling so well, he was tired and lethargic and I thought maybe it was too much for him. Turns out he got his temperatures back with a vengeance - so back onto the drip and antibiotics - the same ones that cause his kidneys not to function correctly. So he will be monitored and doses adjusted to try and keep his kidneys working well.
The doctors gave Seth an xray on his chest on Friday to check if the chemo had been working and turns out the mass in his lungs has now disappeared. This is fantastic news and a great relief to know that things are working well. We will know more next week when he has a bone marrow aspirate done as to just how well treatment so far is working.
Seth begins his new rounds this coming week and also his kidney function test to see how they are going. So busy week for him coming up.

Another week in hospital

Just a quick post to let you all know how he is progressing this week. Seth developed a temperature this week so he won't be released from hospital until his counts rise to a certain level (0.2 neutrophils for those who know what I'm talking about). Basically because he is still getting chemo and steroids, his counts are unlikely to reach that level anytime soon.
He developed mucositis in his mouth this week also, but it diminished the very next day which was fantastic. He had his painful needle of chemo this week and was incredibly brave. His hair is falling out all over the place, but he won't let anyone shave it. The steroids are starting to kick in and he is becoming increasingly teary and cranky. He is starting to get his little chubby cheeks. Thursday was a very difficult day for him. He was just so upset and incredibly homesick. Nothing could cheer him up. By 3pm the nurses unhooked him from his iv line and got physio to deliver a Ben10 bike and he spent the afternoon riding his bike around the hospital corridors as it was a miserably rainy day outside. This cheered him up a great deal. So this has become the routine for the time being. He gets unhooked at 3pm when he has a break in his medicine and off we go on his bike. I think it is a little bit of normality for him and it really makes a difference. It's good for me too as he burns off all that excess energy.
Sienna had a day off school this week to come into hospital for a blood test to confirm her match to Seth. We put many emla patches on her to numb her skin but she lost her bravado when the needle came out and reality hit. She screamed like we were cutting her in two through the entire ordeal. When we told her it was over, she sat up and said "I didn't feel a thing". We couldn't believe it. It will be an interesting time when it comes to getting the bone marrow from her. She won't make life easy for anyone that's for sure!!!

His progress to date

A quick update on how Seth has been progressing since chemo follows: He has taken everything they have thrown at him and is doing really well. The doctors and nurses have commented at how well he has tolerated treatment so far. Chemo finished on Sunday and Monday, they told us that there was a very real possibility of going home for a while sometime in the week. On Tuesday, however, his counts (blood results) bottomed out and they wouldn't let him leave as the risk of infection was so great. He needed a platelet transfusion late Tuesday night and a red blood cell transfusion Wednesday. His counts continue to drop so they will just top him up with what he needs when he needs it. He seems to be developing mucositis which in simple terms is ulcers in the digestive tract. He is in alot of stomach pain with this so they are keeping him comfortable with pain relief. They believe he might have it in his throat as he complains of a burning pain there and he has an ulcer on his tongue as of this morning. Hopefully this won't worsen but some poor kids end up with a mouthful of painful ulcers. He has felt nausea as well, however this has been really well controlled with medicines as well.
He is keeping himself occupied with lego from the play therapist, school work, dvd's, playstation games and practising his guitar skills with the music therapist. There is a library at the hospital as well to visit and borrow books and dvd's from. We try to get outside the hospital to get some fresh air and sunshine once a day, but with the rain falling recently the most we can do is walk the halls of the hospital or visit the starlight room.