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

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.

Seth home for a week

Seth did get his long awaited temperature, however, thankfully, it was very short-lived and the expected fierce illness didn't come. Also, his counts have recovered enough for him to be able to come home for a week. We weren't expecting such a quick count recovery and it is definitely an unexpected blessing to have him home for a while.
Seth has had further chemo but has taken it on the chin with not many side effects.
Sienna has had a visit with the Bone Marrow Team and was trying to be very brave when they put the blood pressure cuff on. She was breathing deeply and holding back the tears - she was really trying so hard. She didn't know what it was going to feel like and she thinks anything a doctor does must hurt. She has seen Seth do it a thousand times but it's different when it's her turn. It was so funny and it was hard to keep from laughing and take the whole thing as serious as she obviously was. She couldn't wait to get out of there before they thought of some other horrible thing to torture her with! After she was saved from the doctors clutches Brett and I were told about how they will take the bone marrow and what will happen to Sienna and the bone marrow etc. They will be taking 440mls from her tiny little hips - it seems like a lot to a mum. She will be pale and lethargic for a while and quite sore on her back with some bruising for a few days. She will need iron supplements for a month but they said kids bounce back very quickly and she should be fine to go home the same day as long as there are no side effects from the anaesthetic.
We came home yesterday(Monday) and we have Seth with us until next Monday when he has to go to clinic for a lumbar puncture, bone marrow aspirate and methotrexate into his central nervous system.  Afterwards if he is well, we can take him home again and bring him back in for admission on Wednesday for two weeks of heavy duty chemo.
Seth will be getting his bone marrow transplant in 8-10 weeks depending upon his bone marrow results. If the cancer is being killed off the way they hope it is, then, it will be 8 weeks. If it is being stubborn about it, it will be 10 weeks. So around late June, early July there will be no going back. 

Update

Sorry for the delayed update, I havent been home since our 5 day stay - still not home and updating via an iPad which is not the easiest to type on.
On our return to hospital Seth spiked a temp yet again so they once again began antibiotics. He got mucositis all over his lips in his nose all through his digestive system . His nose wouldn't stop bleeding so they had to burn it to stop it - much less painful than it sounds. His lips also constantly bled from the ulcers. His lips are just now recovering but he is getting the mucositis returning to his mouth.
He has had a few of those nasty chemo needles - aspariginase, steroids, methotrexate, vincristine and mitoxanthrone aka "the smurf drug" as it is bright blue. It is one of the most toxic drugs but the kids love the blue going in and the green wee coming out! Thats one way to learn about colour mixing! The smurf chemo is meant to make him very ill over the next 6 - 7 weeks. Seth has been really well for the last week, however we are staying in hospital as they are expecting a fever any minute and we live too far away to get him here within an hour. He has quite an easy going doctor who doesn't get worried over much so when he says this drug is fierce and the illness to come from it will be fierce and he doesn't want him to leave the hospital I tend to take notice. As I am writing this Seth's temp has gone up to 37.4 so it looks like it may begin tonight.
Seth had an allergic reaction to an antibiotic they gave him and he got a red itchy rash over his head, back and chest and made his fever to increase to over 39 degrees. They tried to persist with this drug over many days playing with diluting it and running it over longer periods but the rash continued to irritate him so they had to find a new drug to do the job. They think he may have had a staph infection but it is also a type which is a known contaminant so they arent exactly sure if it was in him or if it was on something that came into contact with the culture.
He had platelets a couple days ago, his counts are 0.0 and expected to stay there for many weeks to come. He is in week 8 of a 15 week program. He had vincristine today and has more coming over the next couple weeks.

The results from his bone marrow we thought were great to begin with - we were told he was in remission which meant the drugs were working. But once we got the MRD results back (MRD is a very powerful microscope test they do to see cancer cells) it found the cancer still existing. The doctor told me this wasn't great news, but it wasn't awful news. So... We wait for the next bone marrow MRD results which are done in week 13 and hope for a better result.

Seth had a wonderful Easter weekend. We were fortunate enough to be able to rent out a room at Ronald McDonald house for the four nights. This meant Brett and the girls were right across the park from us and Seth was well enough to get gate passes. We did putt putt and went to Balmoral beach. We ate dinner down at the house at a table like a proper family and we sat together on the couch and watched tv together as a family. Seth and I just had to come back to sleep the night and stay till around midday for all his meds to be given. We then had freedom for the rest of the day. It was wonderful - I was so pleased he was well enough to enjoy the Easter weekend and get out for a change and joke and fight with his sisters and to do holiday activities like most kids get to do. It was refreshing.

I would like to send out a Thankyou to Millie and Asher who sent a very thoughtful gift with no return address. Thankyou to Heritage College in South Australia -Seth is going to make a Thankyou card this weekend. To the many kind and generous people who send gifts please know that they are greatly appreciated and they put smiles on our dials. I am trying to send a note of thanks either via Facebook or letter and I would hate to miss anyone out. I apologise that I am a little delayed in getting to them as there are so many people to thank.