Bit of a drama

Sorry for the late update. Seth appears to be doing well. He is cutting down on his steroids and his eating is subsequently slowing down and he is beginning to lose his weight. The CMV is completely gone and they have taken him off the meds they used to treat it. Today he is very tired and is shivering a bit, but there is no temperature. I hope it remains that way.
Seth's feet are painful to walk on and we are off to the hospital tomorrow for a bone scan and his usual weekly check up. The doctors have said that the medicines he is on can cause pain in the feet and I'm positive that this is all that is going on. Apart from that, the doctors are keeping a close eye on everything and he is managing extremely well at this stage.
Brett, on the other hand had a fall last Monday night and has broken his heel bone in 6 places. He spent 3 days in Liverpool Hospital before being discharged with a boot on his heel. The doctors there decided to let his foot heal itself. Yesterday he had another xray and it seems the break is separating further and after getting a second opinion, the new doctor says it needs surgery. He is scheduled to have surgery this coming Monday to repair the break. At this stage we are unsure what is involved in the operation or what the outcome will be. He is seeing the operating doctor tomorrow to find out some more information.
It will be nice when we no longer have to frequent the halls of hospitals. I am so sick of hospitals now. I just hope Seth remains well over the christmas break and Brett is in less pain so we can enjoy the holidays together.

Bone Marrow Results

Seth went back into hospital on Wednesday for another check up and to get the results of his Bone Marrow Aspiration. They cannot find any trace of cancer in his bone marrow. This is the result we were hoping for. We just hope this continues to be the result over the coming months and years.
Last Friday we received a call from one of Seths doctors in regards to the virus he has at the moment (CMV). They told us that the last blood test shows that the virus had increased to over 900 (it requires treatment and admission at 1000). The team were concerned that if it was left untreated they believed it would be about 5000 by his appointment on Wednesday. My heart sank, thinking they were asking us to come into hospital. Luckily, this doctor managed to convince the hospital to fund a rare and expensive medicine to treat Seth in the hopes that it avoids another hospital stay. We haven't heard yet whether this medication has worked it's magic and the virus is being kept under control. No news is good news. If this drug doesn't work, Seth will be admitted again for treatment.
Seth is still on steroids and getting chubbier and cuter by the minute. On wednesday he weighed over 26kg - big difference to the 21kg he weighed at his skinniest! He is very tired and finds it difficult to do anything physical at the moment. He has tripped over a couple times and falls alot harder now. He hates his big tummy which keeps getting in his way and we are continuing to have wardrobe issues. "Do I look fat in this???"

GVHD

We made it home finally on Saturday 3rd November. It has been confirmed that Seth's GVHD came back and they are now loading him up with a higher dose of steroids to combat the symptoms. The plan is to wean him off these over a period of 6 weeks and wait and see what happens. If he once more becomes overwhelmed by the GVHD it is almost certain that he will have the disease for the remainder of his life. Treatment would be a steroid that he is currently on called Budenoside. It is not absorbed by the body and only treats the gut. They tried using this drug at hospital in a larger dose but unfortunately his heart rate plummeted and they couldn't continue. The reason for this is that the radiation has made the gut "leaky" and it absorbs things more easily. Over time, this should correct itself and he will be able to tolerate the Budenoside in a larger dose to treat the GVHD.
The problem at the moment is that because Seth is testing positive for CMV, the steroid he is on will help the virus to multiply. So, they are keeping weekly tabs on how fast the virus is progressing and in the end, he may need to be treated for CMV after all, which is another stay in hospital.
Today, Seth has gone to hospital for his blood tests and they are doing the first bone marrow biopsy since his transplant. This will be sent off for testing to see whether there is any sign of cancer. We should get the results in a weeks time, so there is alot of breath holding for us at the moment.
Seth is putting on his steroid weight and his cheeks are so chubby and his tummy is so distended his normal t-shirts aren't fitting him. He is having wardrobe issues - much like a pregnant woman has (which is funny for me but not for him). He is very emotional - thanks steroids - and very fussy with food which isn't easy as there are so many restrictions on his diet now. He cried for about an hour because he couldn't have twiggy sticks. Poor little thing - its funny but not. He is not going to do well today having to fast for his general anaesthetic.
I would like to thank the 2012 Study Week for the DVD they sent. It brought tears to both Seth's and my eyes listening to you all sing for him and reading the signs of encouragement. Thank you also for your generosity, we will be using the money to enjoy some family activities during the christmas school holidays.
I would also like to thank the members of Golden Grove Sunday School for their collection and all the special messages we received. We are planning a family outing with a night stay away and we will be using the money for that. Thank you also to everyone sending cards and packages. They are very encouraging and remind us of how blessed we are.

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!

Short but sweet time at home

I am writing this post feeling quite sad today. As you know Seth has been doing incredibly well and I really have nothing to complain about. He continued to do so well the doctors were going to send him home on Wednesday. Unfortunately when Wednesday came, Seth's kidneys were no longer coping with the amounts of drugs he is on. We had to flood him with fluid as they didnt want to put him back onto a drip. In a perfect world, they wanted him to have 2 litres in 12 hours. A feat that is impossible so soon out of transplant. He vomited a couple times and we ended up flushing gastrolyte through his ng tube to spare him the ordeal of constantly drinking. Needless to say, he didnt make 2 litres, but he managed to get through 1 litre. They stopped some of the drugs that effect the kidneys and his creatnin levels started dropping. On Friday we were allowed home on the condition we kept up with the water loading. We were given so many rules and regulations about what he can and cant do and eat. The main ones are no crowds, absolutely no takeaway, no visitors who are sick, he can only drink from a water bottle for two hours before it has to be thrown away, only long life juice not fresh and he is not to have it after it has been opened for 24 hours, preferably no leftovers, no deli meats or anything that comes from a deli, no cut fruit from supermarket, no bread from a bakery and it continues on and on. He has so much medicine to take, its crazy, half of our table is covered in medical supplies just to keep up with his requirements. We could open Masons Medical Centre with what we have.
We arrived home around 3pm and Seth was beside himself with happiness. He got his mojo back and all was right in our world. It was Sienna's birthday and we were so happy to be home to celebrate with her and give her some pressies we had been storing up. We had homemade pizza which was both what Seth and Sienna wanted for dinner and Seth ate most of one slice. There were even fireworks down in Picton that we had a perfect view of through our back window. Sienna claimed them for her birthday and seth claimed them for his homeoming. It was the perfect end to a very momentus day for us. We were one step closer to beating cancer and moving on with our lives.
I woke a few times through the night because his feed pump kept alarming. When I got up at 5:30 to fix it, Seth felt really warm. I didnt want to believe it, so I got the thermometer and sure enough 38.3. Seth didnt believe me so we tested with two thermometers about 8 times till it sunk in that he was going back to the hospital. Seth was inconsolable, he just sobbed and sobbed. It broke my heart to see him like that. We gave him some panadol and his sisters got up to say goodbye and that was that. Seth spent most of the day in emergency today, waiting for a bed. He finally went up around 3:30 this afternoon. His temp is on the rise again, we have no results from all the tests done this morning but hopefully it wont be anything serious and he will be home sometime this coming week. I will keep you posted on the outcome.

Better than we could have imagined

Seth is doing extremely well. So well in fact that he has been having gate passes from hospital for a couple hours. This has done amazing things for him. He has more energy, he is happier, he is putting on weight and is doing so much better than we ever could have hoped for. He is still going out in a wheelchair as he is still weak. He had a wonderful time on the swings the other day and we had to ask him to get off so his sisters could have a turn. We walked through the Wisteria Gardens at Westmead (about 50m walk from the hospital) which are full of blossoms and so beautiful. It was a wonderful time spent as a whole family going out together. I didn't expect that to happen for quite some time. Seth wears a mask when outside and passing people. His eyes are very sensitive to sunlight and his skin is also sensitive to the sun. He will not be allowed in crowds for at least another 3-6 months. Luckily it is spring and summer is on it's way so we can do a lot of outdoor activities when he arrives home.
Last night he ate a bowl of cereal - which is a huge deal.  His temperatures have dropped back to normal and they are talking about him leaving hospital as soon as next week. This is well ahead of when we thought he would be allowed out. We may have to stay at the unit at this time as they want to see him at least 3 times a week for around 3 weeks.  We will play that by ear but he can at least come home for the weekends if this is the case.
The doctors did a CT of his head and chest to try and find out what was causing the dizziness and temperatures. He is on antibiotics for the temps so they don't want to say that the problem is fixed when it could be only covered by the antibiotics. The head scan was fine, the chest found some spots on his lungs. They believe it may be a fungal infection and the cause of the temps. Yesterday they put him to sleep and inserted a camera into his lungs and put some type of fluid in there to flush them out. The fluid has been sent away for testing. The doctors said his lungs look good. Not sure when we will get the results of the fluid test, but we are not expecting it to be anything serious.
As far as graft v host disease goes. It looks like the worst Seth is going to get is red ears, hands and feet. They have said that the higher the counts get, the more likely he will show signs. However, they said that the longer he goes not showing signs of the disease the more unlikely it is that he will get it. So, his counts are rising slowly, but no further signs of the disease. Wonderful, wonderful news as it is a nasty disease to get and could have damaged his major organs permanently or been fatal. It seems we have dodged that bullet - so far, so good. I questioned then whether we would have any graft v leukaemia (which means Sienna's cells will kill any cancer they find) and was told that this can still take place very effectively without the graft v host disease. They said they should see how this very important part of the transplant has worked in the first bone marrow aspiration he has, which should be around 2 months after transplant.

Sienna is showing herself

In the last week, Seth has started to get a little sicker every day. He is suffering from vomiting, diahorrea, dizziness, weakness and high temps. Wednesday his vomiting was so severe that he threw up his nasal gastric tube. This was his greatest fear. He will have to have it re-inserted, but at the moment is too sick to tolerate it. The end that was in his stomach was coming out his mouth and the other end was still hanging out his nose. Once he had stopped vomiting and his panic settled down, he pulled the whole thing through his nose by himself.  He was so brave, I just don't think I could've done it. As you can imagine, he is living in fear of having it put back in due to the mistakes made the first time. Unfortunately, he will have to be awake for it this time and I just can't imagine how scary that scenario must be for him.
As he cannot tolerate anything in his stomach at the moment, he is unable to eat or drink and he is losing weight. He has lost 2kg's so far. They are going to try and prevent much more weight loss by putting him on TPN which is supplements that go straight into his blood via his central line.
Sienna is beginning to show her presence, as Seth's blood counts are showing a slight rise. He has 0.3 white cells and 0.1 neutrophils. They are unsure as to whether the symptoms Seth is showing is due to the fact that the transplant is now taking effect and it is part of GVHD (Graft V Host Disease) or whether it is due to something else. We are on the lookout for a rash which is another sign of GVHD and his palms and soles of feet are pink which is another indication the transplant is taking place.
Last night, Seth's temperatures went up into the high 39's and they aren't being controlled by iv panadol anymore. Fortunately, his blood pressure and heartrate are stable, so, at the moment the doctors are comfortable with the temperatures.
Seth is no longer well enough to participate in class lessons, or his favourite, guitar lessons. He is spending his time watching tv/movies or playing on his ipod. Physio's visit every day to try and get him up and moving to retain the strength in his legs. He makes their life difficult by bargaining the amount he will do for them. It's funny to watch the process - it's good because he still has his fighting spirit in him.

First week down

Seth is doing really well so far. Things are running very smoothly, better in fact than what I or the doctors thought they would. Seth has had a couple low grade temps, was put on antibiotics which did the trick in a couple days. He has vomited a few times here and there. Last night was really the only drama that we've had and it turns out it was nothing serious just a reaction to a drug. Around 8pm last night Seth's heart rate dropped to 45 - 60 beats a minute which meant that the nurses had to call a rapid response team from ICU. He was sitting up. feeling totally normal, just a little tired. They monitored his heart all night, watched his blood pressure every 15 minutes, did an ECG and in the end couldn't find any reason for the drop. By about 6:30am his heart rate returned to normal. What they believe happened was that Seth was given a blood product called Intragram earlier in the day and he had a slight reaction to it (he has had this product about 4 times in the past with no reaction before).  The reaction was a blotchy rash covering his chest, stomach and back. His ears, hands and face became flushed as well. To prevent any further reaction they gave him an antihistamine and a steroid. It's this steroid that they believe caused the slowing heart rate. 
Seth has required platelet and blood transfusions as his counts are dropping quickly still. His hair is starting to come out today due to the radiation treatment. He had a bleeding nose yesterday probably from the mucositis and couldn't be stopped until they topped up his platelets. It was only a very slow bleed but just annoyingly dribbling for half the day.
Seth is on a low dose of morphine for pain related to mucositis. He has the ability to push a button for a top up but so far has only pushed it about 3 times in the week. His mouth sores are nearly non existent which is a huge surprise. This is one of the major problems kids have with transplant, caused by radiation and the huge chemo dose. His mucositis is very minor, considering how bad he has had it in the past from just chemo. Seth is just full of surprises - nice ones.
Seth is in good spirits for the most part. He had a good cry yesterday but picked himself up, dusted himself off and was smiling again in no time. He is so well in fact that he is participating in school lessons and music lessons. We are playing games galore and he is still up late at night without even a nap in the day. Very, very unusual for bmt patients who normally sleep the days away.
The doctors are really pleased with how well he is going. In their words "Every now and then, we get a kid that comes along and surprises us, Seth is one of those kids".
Hopefully he continues along this path for the remainder of his treatment.
Sienna is doing really well. She went back to school on Friday and was sorely missed by her friends so we were told. She had news yesterday and took in her bone marrow label and told the class all about her hospital experience. She told me the class had about 500 questions about the bone marrow, to her great delight. She has cashed in on her donation with a shopping trip and a movie funded and escorted by her father. I can just see that in about 8 years time she will be hitting Seth up for taxi services still using the fact that she gave him her bone marrow as to the reason he owes her! I can't wait to hear those fights. It will be music to my ears.

Day after

Firstly I would like to thank everyone for all their kind words, thoughts and prayers. It is such a blessing to have so many people caring about Seth and our family. It is truly humbling.
Yesterday went better than could be expected. Brett arrived with girls in tow around 7:45am and I immediately took her up to day surgery. The team there took her through very quickly so there was not much waiting around. Sienna was her usual smiley, happy self and had all the doctors and nurses wrapped around her fingers by the time we walked down to theatres. Once we entered the prep room the dramas began. She wrapped her arms around my neck like a vice and nobody could pry her off. She started crying and saying she had changed her mind and didn't want to do it now. To save my back and neck from bending over the bed the nurses got me a chair and I held Sienna on my lap. Then it was time for the mask and she wouldn't let them put it on her. She wanted them to do it to me so on with the happy gas I went and started giggling away in the hopes she would think it was fun. She did think it was funny as long as it stayed on me! Eventually she allowed me to put it over her face and we were doing really well until they changed the gas over. She screamed like someone was stabbing her in the heart and threw the mask across the room. I thought she was having some kind of allergic reaction but it turned out it was the dizziness that freaked her out. Eventually she settled down again and they readied her for the change in gas and talked her through by asking questions about her puppy dog. Then she was fast asleep and whisked away. I left feeling a bit shaken. I knew it would be difficult but it broke my heart to put my healthy, well, child through pain and fear. The whole procedure took about an hour and the doctors were really pleased with the amount they were able to harvest. She woke with a bit of pain which was controlled with local anaesthetic and oxycodone. She took a bit to wake up but once properly awake she was well enough to be discharged and we were back in Seth's room by about 1pm. She was showered with praise and hugs and gifts when she arrived by grandparents and her sister. Seth was a little bit tired and watched the action quietly from his bed. The report from home today is that she is talking non stop about yesterday and apart from a bit of pain is doing really well. The bandages come off tomorrow so we will see how bad the bruising is then.
The marrow arrived at the room by about 1:30 - 2pm and I was glad that Sienna was able to see it go through. It was dark red and had both girls swooning from the look of it dripping into his line. The whole thing took about half an hour to happen. There was no bad reactions, nothing dramatic happened and everything went smoothly. Seth was a little tired and just rested through the transplant. Sienna has now done her job and the rest is up to Seth. Today he has a small amount of chemo which is really only used to suppress his immune system further to prevent any reactions he may have to the marrow. It isn't enough to kill off the new cells given to him. He is doing really well at the moment and is doing a small maths lesson as I type this. He is having stomach pain and nausea which they are controlling with drugs.
What is expected to happen in the coming weeks is many temps due to the lack of immune system. They expect his counts to completely bottom out and in about 3 weeks Siennas marrow should take hold and begin to grow. When this happens, he will experience something called graft versus host disease and any number of things can happen there. This is when Seth's cells and Sienna's cells start to battle each other. Much the same as if he had an organ transplant and the body started to reject it. The immune suppression drugs will help control this reaction, but they encourage a small amount to occur as Sienna's marrow will fight any cancer cells that may be lurking. Seth will also need many transfusions as he is not making any blood or platelets. His blood group will also change to Sienna's sometime along the way as well.

                                            Seth During Radiation

                                                             Sienna Post Op

                                            Sienna and Seth after the transplant

                                                   Siennas Harvested and treated Marrow

                                                     Transplant in progress

                                                    Seth Over the excitement and attention
                                                    and just wanting some sleep

                                            Seth and Sienna spending some quality time
                                             before the months of isolation begin.

Radiation over with and transplant tomorrow

We arrived at hospital last Tuesday for admission. Sienna was required to come along just for a check up. We managed to get settled into our room by around 5:30pm. The following day Seth began radiation. It was an early start at the adults hospital were he was laid down in what resembles a Perspex fish tank with the ends missing. They then put sensors over his body to measure the amount of radiation he was about to receive. They then added sand bags around his shoulders and chocked him up with foam blocks to help keep him motionless. Once this was done, they lined him up with the beam and put another Perspex tank next to him. This tank had Perspex blocks of different thickness wedged in alongside each other. This is what the measuring was all about earlier in the year. The purpose of this is so that each part of his body regardless of the size gets the same amount of radiation. Once he was settled with a DVD playing we moved out of the room and watched him on a little monitor. They had one person at all times watching him for any movements. If he moved too much they turned off the beam. All in all if he laid fairly still it would take about 10 minutes for one side. They then stopped, went in and turned the tank around so the other side of his body caught the beam and they started again for another 10 minutes.  Seth had to do this routine twice a day for 3 days straight. Seth suffered from nausea, tiredness, leg pain, an aching jaw and itchy skin. He was dosed up on pain meds and anti nausea drugs so it was bearable for him and he got through all six in remarkably good shape. This took us through to Friday and then Saturday he was given some very strong chemotherapy called Etoposide which went through in four hours. By the end of the infusion he was feeling quite nauseas and looked awful. Once again they just upped his anti nausea drugs and he picked up again. Sunday they started him on a 24 hour infusion of an antirejection drug. Which is still going through right now. He had a bad night last night with vomiting and diarrhea and is quite tired today. He has stopped eating most things now and is very reliant on his feeding tube to keep his nutrition up. He is in a positive mood and is in good spirits for the most part. He is sewing a cushion, playing games, listening to stories, watching movies and even participating in school lessons. I have been really surprised at how well he has remained throughout some of the worst treatments possible. The radiation as I understand it has now killed off his body's ability to make new bone marrow cells. It has killed off cells where chemo can't reach. The chemo he had after radiation was to clear out whatever cells were remaining in his marrow. The anti rejection drug called cyclosporine is now suppressing his immune system so that he won't reject Siennas bone marrow. He is now officially incapable of fighting off any kind of sickness. He has no cells to fight and what little fight he has left has been suppressed. 
Tomorrow is the big day and Sienna is starting to get really nervous. She talks alot when she is nervous about what is going to happen. She told me last night on the phone that she was feeling scared. She has been kept home from school all week just to keep her safe from catching anything as she too had caught a cold. Sienna is required to come in very early tomorrow to get things underway. The marrow will need to stay in the lab a bit longer as they are different blood types so they want Sienna to be done first thing. Seth will receive the cells by the afternoon. 
Seth has a rest day today which basically means that he doesn't get any chemo. He seems well prepared for tomorrow and just glad it has finally come as am I. 
Taylah will be joining us tomorrow at the hospital as we don't want her worrying all day at school. She will be able to spend time with Seth beforehand and we don't want her to feel left out of what is a big event for our family. She has been much happier since we made the decision to have her with us at transplant and I feel it was the right choice to make. I will update again after Tuesday is over with. 

New Plans

For those that don't already know, unfortunately Seth developed a cold the morning that he was going to be admitted for radiation and his bone marrow transplant. We rang the hospital and were told to bring Seth in for them to do some testing, but they would not be admitting him. Seth was quite upset because in his words "I just want this over and done with". I was upset myself as it took alot of effort to get into the right head space and having one more thing go wrong was just too much.  We were called in to hospital today (wednesday) by an early phone call from the bone marrow team. They wanted Sienna in for another blood test because by law the blood tests have to be done within a month of transplant. I have to share a funny moment. The nurse asked Sienna what is her birth date and she said "this year". They also wanted to examine Seth again. The good news is that he has a simple cold, nothing sinister, and they are happy to go ahead with radiation which they have booked in for Wednesday. So we will now be admitted next Tuesday, radiation begins the following day and I am unsure of the day for transplant at this stage. It will more than likely be either the following Monday or Wednesday.  The results for his bone marrow aspirate are encouraging as they are still negative and that is what they need to continue to transplant.

Things are ramping up now

Just a quick update to let you all know how things stand for us at the moment. We are back and forth to the hospital now getting all sorts of tests done so that a baseline is set. They are things like heart echo's, lung function tests, kidney tests, ct scan etc. They do this so they know how well his major organs are functioning before transplant so they can see any damage that might be caused by the transplant itself. He has been 3 times this week and next week is our last week at home. They try to get the kids to stay out of the hospital altogether in the week leading up to transplant but unfortunately Seth has to go in for a lumbar puncture and bone marrow aspirate on Wednesday. He is still doing okay at the moment - no more bugs seem evident.
Sienna did very well with her blood test. She was so nervous leading up to it but she was determined to be brave and not a tear was shed (she did have the numbing cream on). She was so proud of herself. Her first words after congratulating herself immensly for a job well done was "okay mum, now you have to go and buy me a present and a chocolate because I was so good". Needless to say she bought herself a little gift and packet of smarties. Our conversation on the way home was all about how I had to tell everybody just how well she did and how she didn't cry etc etc and I wasn't allowed to forget. How could I when she reminded me every 5 minutes!!!
This gives me hope that she will do well when it comes time for the bone marrow harvest. We will probably have to shower her in gifts and praise but she will deserve every bit of attention that she gets. She is a different blood type to Seth, so they will have to remove the red blood cells amongst other things from her blood in the lab before Seth can get the stem cells. The only change this makes is that it will be a little later in coming to Seth and his blood type will change to Sienna's. We told him he is going to end up liking fairies and everything pink like Sienna. It took him a while to figure out whether we were pulling his leg. We had him worried for a bit that he would turn into his sister.
Seth is admitted on 6th August and won't be out until he is well again after transplant which will God Willing be around the beginning of October. Nerves are now kicking in for me but onwards we go - there is nowhere else to go.

We have a date for transplant!!!

13th August - once again you wouldn't want to be superstitious! The radiation is booked for the 6th - 8th August. Then he will have some very strong chemo until the date of transplant. Seth's hair is growing back as he hasn't had chemo for some time now and it so soft like peach fuzz and it is coming back quite dark. He will lose it again with the radiation and chemo coming up. For now it's a novelty with everyone touching his soft baby hair. Sienna is having her needle tomorrow - neither of us is looking forward to that little adventure! She promises me she will not scream the place down... I have my doubts! We took Seth to hospital on Tuesday for a check up. The doctors were very happy with his recovery. The shingles are almost gone now. They decided it was time for chemo so we were back in on Thursday for a 6 hour dose. It made him a bit tired and nauseas but as always he is full of beans now. It is his birthday today and we are having homemade pizzas as requested by Seth for his birthday dinner and a walk down to the park if the weather warms up a bit. A simple and quiet birthday, but he seems content with that. Seth isn't required to go back to hospital until Friday so he gets a bit of a break this week from the back and forth trips. We just need to keep him well for a few more weeks:)

Random temp

We have been enjoying a lovely time out of hospital. We are visiting twice a week for check ups. Seth's shingles have dried up and seem to be recovering well. The pain has gone thanks to antivirals. Last Monday Seth got a low temp of 38.1 so we had to return to hospital for admission and iv antibiotics. Fortunately it didn't turn into anything and the temp was a one off. We were allowed home by Thursday night. Seth is now coUnting the days until his birthday and enjoying time with his sisters during the school holidays. Things feel almost normal at the moment and it is very nice. Transplant is still going ahead at the end of July as far as I know. Seth has had negative RSV test results every week so there is nothing to prevent the transplant any further.

Shingles - a picture says a thousand words

We went to hospital yesterday and Seths oncologist and his bone marrow doctor confirmed that it is a classic straightforward case of shingles. Everyday the blisters increase and so does his pain. Today he is very tired and miserable. At this stage the shingles will not affect his transplant. They are postponing chemo until they have some control over the shingles. He is on some antibiotics and pain relief. Apart from that, we sit and wait and hope it stops getting worse everyday. It is now moving up his face. It has made it to his cheek. I just hope it doesn't make it to his eyes. I think the pictures say it all.

Photos explained

We are still home and loving it. We have been back to the hospital for check up visits. Seth was supposed to get chemo on Thursday last week but it didn't happen. The doctors were waiting on approval from the people conducting the study that Seth is on. Approval only happened Thursday morning so they were unable to get the chemo organised in time. We returned to hospital on Monday(yesterday) and while we were sitting waiting to begin, Seth came out in a blistery rash on one side of his head down his neck at the back and on the front of his neck. His oncologist came to see it and thought it may be shingles. He sent us home without chemo with instructions to call if the rash continued to increase. This morning, it had doubled in size so we will have to go into hospital tomorrow for the doctor to have another look and to advise us where we go from here and what it means for Seth's future transplant. I have no answers at the moment about how shingles will affect him or how they will treat them. I only hope they don't have to delay his transplant any further.
I would like to once again thank everyone who sends cards, letters, gifts to Seth and our family. I unfortunately have been unable to keep up with the thankyou's so I would like to express our gratefulness on this blog. We receive on average 1 - 2 letters, cards or packages a day. They are from as far away as Canada, England, Africa and India and of course all across Australia. They are from people we have never met and from people we know. They cross all generations from the very young to the elderly. They include photo's of families and letters about those families and gifts for our children and Seth. I cannot express how grateful we are to everyone who has taken the time out of their busy lives to let us know just how much Seth is in their thoughts and prayers. Our family is so very blessed to have so many rally around us. It gives us strength to continue this battle. Please know that every letter received is read by all of us and is kept in a keepsake box for Seth to look back on. Every letter is precious to us. Thank you one and all.

A bit of fun when all he would eat was twiggy sticks

His favourite trick to play on nurses

paint fight gone wrong with a mate

sleepy after ng tube inserted

A picture of mucositis on his lips

Green wee after blue smurf drug

You can do so much with a bald head

Getting ready for Riboviran under his tent

A face only a mother would love

NG trouble and home for a while!!!

Seth has had further trouble with his ng tube. It wasnt working correctly so one of the nurses came down to see what the matter was and thought the length was still incorrect. She remeasured and it turns out that it was a whopping 20cm's too far in. Seth is so scared of this ng tube now and it could have so simply been avoided had enough care been given in the first place. Obviously it needed to be pulled out and Seth did this himself. I'm so proud of him. Now he feels much more comfortable and things are now working well. I spoke with the BMT on Monday and they are holding off on transplant till the end of July. This is a six week wait and they are going to have to balance between the risk of Seth catching another virus and giving the cancer a chance to build up again. His 15 week treatment is now finished and normally they would be going straight to radiation and then transplant. In Seth's case they need to wait for two consecutive negative virus test results a week apart before they consider him free of the virus and would even consider a transplant. I was told by the BMT that RSV was the last virus they wanted him to catch as it has a high mortality rate. He can also get a negative result one week and a positive one after that. This is the reason they want to wait until the end of july - they want to make sure there is absolutely no chance he has any of that virus left before taking him into transplant. As the BMT like to scare me, they told me they have lost many kids even on ventilators from RSV and it makes it very clear in my mind that the decision to wait is the only way to go. The MRD results are back and they are negative which is exactly how they needed to be to continue to transplant. A great result that the doctors are going to need to keep that way until transplant and we need to do our best at keeping Seth free from any sickness. We have been able to come home now (since Monday) and we have our own feed pumps and feeds at home. Seth has 8 hours a day off his pump and it has been wonderful to be home. We go back to hospital Thursday for a 6 hour chemo treatment and hopefully we will get a better idea of how they are planning to treat Seth in the coming month and a half. If we are lucky we may be able to just visit once a week for chemo and checkup. We are clearing out of the unit on Thursday and the Leukaemia Foundation is going to try and get another one for transplant time. Now I am home I will be able to sort out the photo problems and I will get some up next post for sure.

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

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.

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.

The first week

Well..... to begin at the beginning....
Many people want to know how it came to our attention this time around.
Seth seemed unwell for a couple days, just a bit off colour. He threw up a couple times, but we put it down to the chemo. Sunday night (couple weeks ago now - how time fly's [flies???]) Seth's glands started swelling under his jawbone. They became quite large so that they stuck out of his neck. This was when we began to worry. The very next day I took him to Campbelltown for a blood test, x-ray and examination. The doctors there were hopeful of it just being a virus. Westmead requested the results and we got a phone call Thursday morning that they wanted him in for new blood tests. It was confirmed Thursday morning that there were some suspicious cells in his bloodwork. They took yet more blood for further testing and we got a phone call from them 6pm at night to confirm the cancer was back. We were back by 8am the following morning and Seth was to have his central line redone, bone marrow taken and lumbar puncture done and x-ray done. The x-ray confirmed that he had tumors on his lungs which is how T-cell presents. They didn't get him in to surgery until 2:30pm which was torturous because he had been fasting for so long. Then they ran out of time so they weren't able to do the central line. We waited all weekend without any information as his oncologist was on holidays. We were told we would find out how they were going to proceed on Monday. Monday was another long wait for surgery - 2pm was when Seth was called up for his central line to be inserted. We waited all day for the oncologist to tell us what was going on - never saw him. By Monday night I was over waiting patiently to see what the future held and requested to see someone, anyone at all who could give me some kind of information. I got a visit from an oncology fellow telling me that they couldn't tell me what was going on as they were waiting for approval for a new drug. Once they had the approval then they could tell us what to expect. Seth was in alot of pain with the central line - more than what I remembered from last time. He had quite a good bruise around the cut in the neck and had trouble moving his head around.
Tuesday we got the talk in the little room. The questions were answered, the information handed over and now we know what we are in for to some extent. I can't see Seth leaving the hospital for the remainder of 2012. His chemo is extremely intense. He is considered High Risk and will be required to undergo bone marrow transplant. There is going to be many fevers, many delays, many illnesses that come along with this kind of chemo treatment. His chances of getting through this are about 50% which is a fact we find hard to swallow and don't like dwelling on.
One day at a time is all we can manage at the moment. The outcome depends on how the chemo reacts to the treatment and how Seth reacts to the treatment. The cancer is already considered pretty aggressive as it returned while he was still on maintenance chemo. All we can do is hope that this lot works.
We have one bit of sunshine amongst all this and it is that Sienna is a perfect match to be a bone marrow donor. It is considered very lucky as only about 20 - 30% of siblings match. They like their percentages! It is nice to be on the side of the lucky percentages this time instead of the unlucky. This is the best possible outcome we could hope for in a bone marrow donor. The kids do so much better when it is a relative.
There are 2 ways a bone marrow transplant is done (from Sienna's point of view). They either give her a injection under her skin which makes her stem cells move to the blood and then they hook her up to a machine via a temporary central line inserted into her groin. The machine separates the stems cells from her blood, then pumps it back into her body. This happens for 5 days in a row. Or they make 2 incisions on either side of her back and extract a total of 300ml's of bone marrow from her hips - they can get about 10mls each needle so it will be roughly 30 needles into her hips to get the required amount out. Either way doesn't sound very nice, but they assure us she will forget the pain in a couple days time. We will be told more about the transplant when we get closer to the time.
Seth started his chemo on Wednesday - he has a cocktail of steroids mixed with 3 different types of chemo for 5 days - he has already had the chemo into his spinal fluid. They have found no sign of the cancer around his brain so this is also some good news. His marrow was about 60% (those percentages again!!!) filled with blasts (cancer) and we picked it up as early as we possibly could.
Seth is doing really well so far. They are very vigilant about making him as comfortable as possible. The chemo takes about 7-8 hours a day so we only have the morning to get outside and get some fresh air and sunshine. He only lasts about 30 minutes before he is too tired and wants to go back inside. The days are filled with lots of people making a difference to the kids in the ward whether it be cure our kids, camp quality, starlight foundation or any number of people trying to make a difference by volunteering their time, raising funds or handing out donations. It makes such a difference to life being lived in the confines of a hospital.
We will keep the blog updated as often as possible, but life just got a whole lot busier so forgive us if there is a little wait between postings.
Thank you to all who have left messages via facebook and on the blog. It is heartening to know there are so many people that are thinking of Seth and praying for him. A few words of support from so many people helps a whole lot more than you could possibly imagine. We are definitely not alone in this battle.