Quick update

Seth has now got his eyes opened and is feeling much better. His vision is still a bit blurry and he is still sensitive to light, but the pain has decreased immensely and he has no trouble keeping his eyes opened now. All things were going well yesterday (Tuesday) they decided to let Seth have a gate pass and we went over to the unit. We were there for a couple hours when Seth began to get a fever. So back to hospital we went and they instantly hooked him up to antibiotics. 1 hour later his temp had reached 39.9 he was crying his little heart out saying that he felt like he was burning. His pulse was racing at 192 and he had a funny rash on his hands and they were so so hot. They had accidentally given him an antibiotic that he has an allergic reaction to. It is an antibiotic that he must have but they just need to give it diluted and over a long period of time. Panadol, claratyne, cold packs and cool washcloths settled the temp and the reaction down to make him more comfortable. Throughout the night Seth's temp kept rising and falling and he had very low blood pressure. They ended up calling in the doctors who then called the intensive care unit to check him out just in case....????? They pushed through lots of fluids to make his pressure come up which worked. To make a long story short, we managed to get some sleep by around 5:30am. Today, Seth's temp continues to go up and down but Panadol is working its miracle and keeping all the bad things at bay. He has what they call a gram negative which is a bacteria that normally we all live with quite happily. However because Seth's immunity is non existent it has taken over and is causing the fever and all his symptoms. He will now be on a 7 day course of antibiotics which will continue after this time if his counts are still low. Thank you everyone for your comments of support. They are very comforting.

No can see

Our poor little man is having a troublesome week. You can't go through two weeks of high dose chemo and expect to come out unscathed, however he has had a severe reaction to one of the drugs. His eyes are ulcerated and inflamed. He cannot open his eyes at the moment it is too painful. The doctors haven't seen such an extreme reaction before and that's a good thing. Seth is just laying in his bed with his eyes shut tight. He can't stand any form of light so he covers his face throughout the day. He uses ice packs to ease some pain and they are using a combination of drops to try and relieve his pain and lubricate his eyes. The drops cause him a fair bit of discomfort as they sting when they go in. He has been like this since Friday afternoon. The only thing I can do to help is read to him. I have also managed to download audiobooks from iTunes for him which he seems to enjoy. Other than the above, he is not eating or drinking much and they are talking about possibly putting the nasal gastric tube in before his mucositis gets too bad. He will have to have the tube in for transplant anyway so they may end up putting it in early to ensure he is strong going in. Seth has the runs which they put down to chemo and mucositis, but it means that he has lots coming out and not so much going in. They have increased his drip to counteract this to prevent dehydration. Seth has also had a bad reaction to another drug they have given and he has come out in a rash over his hands that looks like burns and he says feels like carpet burns. This is being treated with a burns cream and is slowly healing. He has no neutrophils at the moment so is suseptible to getting fevers and such. He is also needing transfusions of platelets and red blood cells a fair bit as his counts continue to fall and not recover. This round has really knocked him around. In true Seth fashion, he always finds something new he wants to try even when everything around him is going wrong. He had a French room mate and so decided he now wants to learn French. The roommate spoke very little English so I downloaded an app where Seth can speak English and it translates into French or any of about 30 other languages you may want to learn. He thinks it's great and when he can't open his eyes this is a good little activity for him to occupy himself. He is very tired now and is sleeping a fair bit, which isn't a bad thing if you can't open your eyes anyway. I will keep you posted.

Full on week

Seth has had a very full-on week at hospital. He had chemo every day for 5 days. He got through it very well so far, but I imagine he will be feeling the results this week coming. He is up for another week of chemo starting this Wednesday.
He is having a new chemo needle in the bottom and this one really rattles him. It is extremely painful and it takes a long time to inject. It just seems to go on and on - as usual though, he just lays there and takes it with a couple "ouches" while it goes in. He usually has tears in his eyes afterwards. He has another 3 of them coming up this week. I wish I could have them for him.
The bone marrow team is really ramping up. We have spoken to the radiation team and they have explained what the short term and long term effects are going to be. Seth is forever going to have to be careful with his health for the rest of his life. He will have trips to hospital forever to check for the long term side effects, I won't go into all of them but he will certainly feel the effects of radiation for the rest of his life. He will be getting 6 doses of radiation to his entire body. Two a day for 3 days. The radiation is essential in his treatment as it can get to what the doctors call safe zones in the body where the chemo cannot get to. This gives the leukaemia nowhere to hide. This makes him very nauseas and mirrors the effects of chemo. He will be exhausted by the final dose and probably sleep alot. It will destroy his bone marrow to make room for Siennas marrow. This is booked in for 12th - 14th June. Then they will wait until the following monday and the transplant will take place. If his bone marrow results aren't good enough, it will be put off for another 2 weeks for further chemotherapy to take place.
We met again with the bone marrow team to discuss things further. All things rest on week 13's bone marrow results (you wouldn't want to be superstitious at all!!). Seth is getting test after test to make sure he is healthy enough to continue to transplant. They take markers on how his organs are functioning so they can tell when or if they become damaged or compromised throughout treatment. We seem to have most days filled with either tests or chemo. It is coming quickly now.
We do have some good news, and that is that the Leukaemia Foundation has kindly donated the use of a flat across the road from the hospital. This is so handy as Brett and the girls can visit on weekends and Seth and I can go back and forth to all the appointments without having to drive the distance each time. The benefits are just too great to mention. This is a true blessing and will make life so much easier for all of us. We have it till the end of June, however they are trying to find us somewhere else to stay after that.
Thank you again to every one who has sent cards, letters and gifts from all across the world. It is overwhelming and such a great comfort. Seth is wearing his symbol of strength around his neck. It certainly makes Seth feel happy to receive these letters and cards and gives Brett and I a sense of support and strength knowing so many care.
I will update again as soon as I can. Much love to you all.xx

SURPRISE !!! Another week at home!!!!

I took Seth to hospital very early Monday morning and for the first time ever, Seth was the first one to go under GA. It makes such a difference to the day. He had a lumbar puncture, bone marrow aspirate and methotrexate into his spinal fluid. We were home by midday - this was a real treat!
The plan was to go back Wednesday for admission. We got called in at around 11:30 so we packed up the car and headed back to hospital. We waited at clinic for Seth's blood results to come back. The doctor came and said we could go back home for another week. Seth's counts were dropping from the chemo on Monday and the oncologist doesn't think he will be well enough to get the doses of chemo that he is due to have over the next couple of weeks. He has got quite a busy couple of weeks coming up with about 4 different chemo's being used plus steroids again.
We are now due back to hospital on Thursday for admission. His counts are expected to be high enough by then and I have no idea how long it will be until we are able to leave again.
The Bone Marrow Team are now starting to really move things along and we have another appointment coming up to discuss things further. My stomach churns at the thought - but it is a necessary evil.
Seth is now getting all his appointments sorted - he has had his eye test. His audiology appointment is coming up and radiology is not far away either. It feels like we are on the downhill run now. We will be beginning week 11 on Thursday (in a 15 week program). It draws nearer.