Seth back to hospital

Things were going really well with Seth at home. He put on 3kg and was doing wonderfully. Then Thursday morning I decided to pack our suitcases away in the garage as I was feeling optimistic. Big mistake. I jinxed myself and late Thursday afternoon Seth developed a temperature. So off to hospital we went. Thankfully we got a room at about 1am and I didn't have to spend the night trying to get comfortable on a chair in emergency. His temperatures dropped and it looked like it might be just one of those annoying one-off temps. They started him on antibiotics and tested for everything - the usual procedure. They found CMV (same family as chicken pox virus) which he had about 2 years ago. This has been known to re-activate after a BMT. The test is very sensitive and sometimes brings a false positive so they do a secondary test to see how much of the virus is active. We only got the results late last night and the news is good. His number is 38 and it has to be 1000 before they need to treat the virus. This is great news because treatment is a month or more stay with some potent drugs iv.
What the doctors now think is that his GVHD is getting the upper hand and they may need to treat it a little more aggressively. I am now just waiting on what their plan is. He has all the symptoms of GVHD that he had before, just not so severe. He has the runs, nausea, tiredness and temps. They are talking about letting him go home tomorrow as long as his fevers stay away. His last fever was Saturday night and they have stopped the antibiotics today. So we wait and watch to see what his body does and with any luck we get out of here soon.

Seth is home and happy

Seth came home on Saturday because his GVHD can be treated with oral medications. He arrived, tired, lethargic, weak and very skinny but very, very happy.
He has made a whole week at home and is doing very well. He has alot of medications to take, but they are doing their job very well. All his symptoms are gone and now it is just a matter of getting him to put on some weight and slowly wean him off his medication when the threat of GVHD goes away.
We went to the hospital on Wednesday and all appears to be going well.
Now that Seth is home, he is eating (which also is because he is on steroids), he is walking around the house, playing with his dog and even cooking things in the kitchen (also the steroids working their magic).
All in all, we are in a really good spot right now and we couldn't be happier having our family back together again after being separated for so long.
I am now very tired as it is all catching up with me but very content to be back where I belong. Things are certainly looking very positive as we have a new baby arriving in the family (Seth's uncle and aunty Tod and Kerry) and my cousin (Matthew Forsdike) who had terminal cancer (Melanoma) has just been cleared of all cancer thanks to a new experimental drug he was offered to trial. Happy news all around and it feels like a new beginning for our family.

We have a reason

Yesterday I found out the reason for the problems Seth has been encountering. He has Graft V Host Disease through his digestive system.
By Saturday the doctors said enough is enough with his temperatures. They made the decision to start him on steroids which drops his temperatures and is what they would do if he had GVHD. They were taking a small risk in that if it was a virus he had, then they would be taking away the body's ability to fight the virus - which is temperatures.
The temperatures dropped immediately and have been normal ever since. He still suffers from nausea and vomits here and there and he also still has the runs.
The doctors went ahead with their endoscopy and colonoscopy on Tuesday and they couldn't see anything abnormal so I was left wondering what on earth is going on and hoping it wasn't a virus after all. They took 6 biopsies and sent them to the lab for testing and we found out yesterday that GVHD is confirmed. What this means is that Seth's body is unable to absorb any nutrients from food. He has been unable to keep things down, and what little he did keep down went straight through. This accounts for the rapid weight loss, the vomiting, diahorreah and the very high temps.
Now they know what they are treating, they have changed his steroids to one that just sits in the gut as the steroids he is on at the moment have made him extremely lethargic and he is just sleeping all day long. They are increasing his immunosuppressant drug as well, just to get him past this hump. 
They also ordered a PET Scan yesterday which was quite interesting - we had to go to the adult hospital and they put radiation into his blood. I then had to leave the room because he was radioactive and sit behind lead doors for 45 minutes while he stayed there watching tv. After 45 minutes they took him in to be scanned in a big donut, then 10 minutes later it was all over and we were able to go back to our room. We have no results from the PET Scan yet and I'm not really sure what they are hoping to find or rule out. Seth's temp got to 37.5 this morning, so I am just hoping it doesn't get any higher and we will be home soon.

Things not going well

The doctors have been unable to find anything that is causing Seth's temperatures. He went up to a massive 42 degrees one night last week. Then a couple days later it appeared everything was getting better. His temps dropped on their own, his vomiting stopped and all was looking hopeful for a swift recovery. Less than 48 hours later, his temps were back and they have been increasing since. He is now remaining in the 39's with Panadol on board. The nurses arent allowing him to get any higher than the mid 39's before dosing him with panadol. He is vomiting, he is pale, weak, dizzy and the runs are back. He had a CT scan yesterday to check his chest again and they have found more spots but nothing they believe the meds he is on can't take care of. They have booked him in for a endoscopy and a possible colonoscopy next week. They believe that as they can't find any viruses or bacteria he may be suffering from GVHD. This can get into the digestive system and cause problems. We will know more next week. He is still on antibiotics, he has become very skinny, particularly in the legs and they are making him as comfortable as possible. He was a little delusional with the temps last night which actually continued to rise even with Panadol in his system. He thought I was telling him the weirdest things like "eating an apple is doom in the jungle". Weird but pretty funny all the same!