Doing well and pressing on with more chemo

A HUGE THANK YOU to Ascot Sunday School over in W.A for the gifts and especially for all the work that went into the scrapbook. What an incredible way to get to know you all and to know that Seth is thought of so often. Seth is recovering well from his respiratory infection. He finished sitting in his plastic tent yesterday and both of us were extremely happy. He isn't a big fan of the tent but it has worked its magic and he improves every day. The nurses gave him a magic box because he had been such a good patient for them. As Seth is no longer eating or drinking, the doctors have decided to put him on a treatment called TPN (total parental nutrition). This is two bags of fluid - one is white and looks like milk - this is all the fats. The other looks like diluted apple juice and contains all the sugars and other nutrients he needs. Seth's counts are on the rise and he was given a gate pass on Sunday and Monday in between his time in the tent. Sunday Brett took him out to play a couple rounds of putt putt and they got back just in time before the rain set in. I caught Seth's infection and spent Sunday and Monday resting in the unit as much as possible. Yesterday the doctors did a lumbar puncture, chemo into his spinal fluid, bone marrow aspirate and nasal gastric tube. Unfortunately when Seth woke up he was in agony with the tube. This is a kid who doesn't make a peep when he gets the most painful of needles, didn't make a noise when he slammed his finger in the door and ended up with a massive blood blister under his nail and he was sobbing in so much pain. The nasal gastric tubes are supposed to feel uncomfortable and a bit weird for a couple days but not painful. They had to give him some strong pain relievers then they xrayed him to make sure placement was correct. They had in fact put the tube in too far. It had to be pulled out 5cm's. They had taped it incorrectly to his face which caused further pain as it moved around too much and it looks as though whoever did it was very rough and caused some trauma to his throat and nose. What cost is it to use gentleness? I am so cranky. As if he doesn't have enough to deal with and this finally broke his spirit. For the very first time in two years I saw him give up. I realize just how much his strength gets me through things. I wish for the umpteenth time I could take this away from him. So, things move along in here despite what happens and he was hooked up with a chemo called methotrexate last night. In the past he hasn't really tolerated this one well so I just hope that he doesn't end up vomiting as the pain would be enormous due to the trauma in his throat. Also some kids are known to vomit up their ng tubes - that is all he needs. I am going to post some pictures soon. Just having trouble with the quality an iPad camera gives.

The fevers have broken

Just wanted to let everybody know that Seth's fevers have finally broken. He is still unwell but the scary bit is over for now. Thank you for all your concern, love, comments, care and prayers. He is smiling again!!!

Turn for the worst

Seth is quite ill now with a virus called RSV. He is having very high temps (in the 40's) which iv Panadol is having a hard time keeping down. RSV is responsible for bronchitis so at the moment they are treating him with a drug called ribovirin which is given similarly to a nebulizer. They put a plastic tent over Seth's bed and use a fan to blow the medicine in over a two hour period. They then scavenge the room for an hour (which is they suck out the air). I am not supposed to stay with Seth while he is having the medicine as it is a strong drug and can have side efects on me. I can come in with all the safety gear while they scavenge. Last night he was 40.3 degrees and so upset that they let me stay with him until he fell asleep. He has to have this done at 2pm, 10pm and 6am. There is a bedroom in the parents room which I can go to sleep in when Seth is having treatment. The bone marrow team came to see me today and said they may need to push back his transplant even further. They need him to be virus free as it can be very dangerous to transplant patients. At the moment it is still late June but they have now booked dates for mid July in case they are needed. Sienna is having her independent doctor appointment today at 12. It is a check up that is looking after her best interests, rather than looking after Seth's best interests. Thank you to all the kids at the Hunter Valley for their box of goodies. Seth wasn't well enough to look at it properly yesterday but he is better today and will have loads of fun with all those activities. Thank you all for thinking about him and remembering him.

Boy in the bubble

Seth has been getting temps here and there. His counts are still not recovering, so we are waiting around in hospital for his neutrophils to return. Seth has been measured up for radiation and been shown around the place so he knows what to expect. He said he now feels much more comfortable with what's ahead of him as far as radiation goes anyway. Seth has just been for a bone scan of his entire body. He has a pain in his arm that doesn't appear to be getting any better. The doctors are just trying to rule out a bone infection. Yesterday we received some game changing and quite upsetting news. Seth has caught a bacteria that is resistant to one of the commonly used antibiotics. It is called VRE and it comes with alot of fuss and hospital protocol. He has been moved out of the oncology ward and into variety ward where they are set up to isolate patients. To cut a long story short, he has to remain in isolation and he is not allowed back into the oncology ward again. Anyone who is healthy cannot be affected by this bacteria - it is harmless. Seth himself will not be affected by this bacteria. It's just that immunosuppressed kids can catch it and then they will have a bug that is resistant to this particular antibiotic. To prevent the spread they have certain rules that are to be abided by. So far the rules seem to be a bit contradictory, for example, Seth is not supposed to leave his room or walk around the hospital, however it was okay for him to walk to the opposite end of the hospital twice to get his bone scan???? It comes down to bacteria somehow mutating themselves so that antibiotics will no longer be able to treat them. Seth will no longer be able to see the nurses he has built relationships with in oncology, he can no longer see the friends he has made in oncology over the last four months. He now has to forge new friendships with the nurses in this ward - who are lovely by the way. He cant be around any other kids now which is really sad. The friendships we made were what made this whole experience bareable. It is just another blow he has been dealt. I'm finally going to say it -"it's not fair". I was told today that most transplant kids usually end up with this VRE which is I suppose a little comfort. They told me that at one time they had so many VRE positive kids in transplant all at once so they had to enclose part of the oncology ward to house them all because variety was filled to the brim with them. So we both feel a little unsettled and a little sad right now, but as we always do, we will make lemonade from lemons:)

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