Necrosis precautions

Seth had another visit to hospital today. Over the last week as the steroids have been cut down, he has developed the symptoms of graft v host disease again. Luckily this time the doctors are not allowing him to get sick and hospitalised. They have listened, taken note and are raising his steroid levels again. Seth has been getting nausea, lack of appetite, red hands, feet and ears and mouth ulcers. All the signs that his GVHD is about to take over again. His blood pressure is now well under control. He has been getting cramps in his feet and legs, he is getting bruising along his legs and feet and swelling in his feet also. This is causing him some pain, particularly at night and early morning.
As said in my previous post, Seth is having issues with his bones. Due to his symptoms, the strength of steroids and the length of time he has been on them and the need to continue with no end in sight, the doctors believe that it is almost certain that Seth will be developing AVN (Avascular Necrosis). To refresh your memory, this is when the blood flow to the bones stop - usually in the ankles, knees and hips. The bone then dies and cells come in and eat the bone away. The bones then crumble and they either need to be replaced surgically with prosthetic joints or if left, new bone forms incorrectly causing terrible arthritis. Neither of these outcomes are very enviable. Now for how they plan to help Seth: there is a drug they can give patients with AVN to prevent the bone eating cells from taking hold. They normally give it to people that have AVN. It is rare to give this to people before they have developed it. As Seth is what they called a "sitting duck" today. They have decided to give him this drug now in the hopes that when AVN hits him, his bones won't crumble as they are protected from the bone eating cells. Eventually, the blood flow will come back to the bones and what they hope will happen is that this will cause new bone to form over the dead bone and it should retain the shape of the joint and it is hoped that that will mean no arthritis or joint replacement. As with all drugs, there is a price to pay. There needs to be a dental appointment as it can cause problems in the gums. Also, it will make him pretty sick. He will need to be admitted to hospital for 3 days. He is likely to get a temperature and the doctor said he will get flu like symptoms. Not the man flu kind but the one that feels like you've been hit by a Mack truck. This is why he will be admitted so they can keep an eye on his temp and his reaction. Then a month or two later he will have a second dose of this drug, but he shouldn't have the same nasty reaction second time round.
So, big day today as he was required to have IVIG (blood product filled with immunity), long time spent talking to doctors and nurses and a lot to take in. He will be getting the fluvax next visit and we have been told to get the fluvax organised ASAP for ourselves and the girls. His dentist visit is next visit and two weeks after that, admission for AVN treatment.

It's been a while

Sorry for my lapse in blog writing, time seems to be slipping through my fingers and I seem to lack the energy to keep up with it at the moment.
Seth is doing well, he has been going to hospital as usual for check ups and things on the cancer front are all positive looking. He is scheduled for another bone marrow biopsy on 12 March and once again there is no need to expect anything untoward in those results.
Seth is on high doses of steroid to control his GVHD and there are serious side effects from being on this type of medication for extended periods of time at such high doses. One that have the doctors concerned at the moment is the effect on Seth's bones. Steroids are known to cause a problem called a vascular necrosis which is when the blood flow to the bones is affected and the end result is bone death. There appears to be no signs that this is the case for Seth, but they are certainly very wary of this condition due to the pain Seth has been getting in his joints (which is where the necrosis sets in)
We have found that his foot pain increases with his steroid dose and decreases accordingly. He was unable to walk apart from a slow shuffle at his worst. This has thankfully subsided and he is now getting about easily and with little to no pain.
The other thing they have found is that (via an MRI) Seth has brittle bones. He underwent a bone density test yesterday to see just how much they are affected. We are still waiting on those results.
The other concern they have is with his blood pressure which read a massive 163/100 yesterday. This is due to steroids and Seth has begun a medication to help level out his blood pressure.
Apart from the above, he is a happy little boy who, in his own words "just wants to be normal". I have put on the school teacher hat and sit with him for a couple of hours each morning to do school work. He loves Dynamo the magician and spends some time every day trying out magic tricks and illusions. He spends time teaching our dog Ruby tricks. She now knows how to catch and how to drop dead when we say bang. He is trying to teach her how to skate on a skate board. Quite a challenge but he is up to the task. Seth is also practising his touch typing skills and his guitar. As he is on steroids once more, he is an avid helper in the kitchen at meal times and has to know what we are having for dinner once breakfast has been consumed. He is a little fatty boom bah again and his hair has grown in dark tight ringlets - quite the opposite to the straight blonde hair he was born with. He has become quite the little bookworm and reads books quite quickly now.
Seth is still has to be isolated from people and crowds. Steroids will make any virus or bacteria 10 times worse if he catches anything so we have to be very vigilant with his health and who is is in contact with. We still need to take care of the food he eats which is much to his disgust (thanks steroids).
The girls are going well, being back at school. Everything seems fairly settled on the home front for them as long as we are home together. They are happy and healthy and bubbling with life. We couldn't ask for more.

2 steps forward,1 step back.

Seth had his bone marrow aspirate last Wednesday and the results show no cancer visible. After Seth's visit to hospital on Wednesday we were told to cease his last remaining steroid. Happily this was done but on Thursday Seth complained about having ulcers in his throat. I put it down to his ng tube rubbing on his throat. Friday morning he thought his throat was closing over and was in a fair bit of pain. Friday night he had one bout of diahorrea but no temp. Saturday morning he woke up with a temp, feeling nauseas and sore throat. I took him to Campbelltown hospital which is the closest to us and what the doctors at westmead request that I do so he can get medical attention earlier. As usual a battery of tests were taken and his symptoms were trying to be managed as best as they could. His diahorrea worsened, the soreness from his throat came up into his mouth. They were red swollen angry looking spots and he continued to vomit. On Sunday, he was having hallucinations with a medication that he has had thousands of times with no side effects. He thought it was funny because my hair would turn purple, I would get old and wrinkly, my eyes would glow, my face would grow fat or long, my nose would turn into a pig nose. Thankfully it happened to anyone's face and it wasn't just me. It lasted about 15 minutes and then was gone. It happened again later that day with the same meds but hasn't happened since. Seth has some strange things happen to him! On Monday, he seemed to be improving a little and the docs were leaning towards a virus. He then developed a rash which was put down to heat rash but it wouldn't fade and it got worse. By Tuesday, the doctors at Westmead wanted him with them and I think the doctors at Campbelltown were relieved to have him go where the experts are. His rash has progressively worsened, but the temps have gotten lower, he cannot stomach anything other than water so hasn't eaten since Thursday. We are now tucked up in Westmead with the BMT looking after Seth and the doctor this morning has said that they just need to rule out CMV. Once that is done, they will put him on steroids to treat GVHD. They have said Sienna's cells are very feisty and they are still trying to attack Seth's cells. The good news is that they are attacking any Leukaemia cells that might be floating around as well. So the plan is to go back on steroids and wean off them quite quickly again and see what happens again when he comes off them. They have said eventually, her cells will get used to him, it's just taking a little longer to happen. Seth's blood group has now changed to Siennas blood group which gave the Campbelltown team a bit of a shock (hehehe). Well, hopefully we should be out of here by the end of the week

Merry Christmas and Happy New Year to all! We have been fortunate enough to have Seth home this entire time. We have enjoyed a quiet holiday period as there is not much we can do with Seth being immune suppressed and Brett with his foot injury. It has been lovely catching up with friends and family. Brett came through his op well with plates and pins in place permanently and is well on his way to recovery.
I just returned from Seth's weekly hospital visit today and most things seem to be going well. They have found arthritis in his ankle from the bone scan. However his pain is getting worse as time goes by so they did extra bone blood tests (dont ask me how they do that or what they look for) and an xray today and have booked him in for an MRI. He is hobbling about like a little old man and it's sad to watch him struggle. Unfortunately the arthritis is here to stay and they believe it's due to the chemo and steroids as there was no evidence of it in all his tests before his transplant.  Unfortunately the side effects of treatment are now starting to catch up to Seth and it is a matter of dealing with them as they appear. The other thing is that one of the chemo's he has taken can shorten the calf muscles and now that he is up walking around, they are being stretched and can cause pain for about a year.
Seth is having a bone marrow aspirate next week to test for cancer. There is no reason to believe that at this stage they will find anything.
Seth is still very weak and tired and lacks energy. He finds it very difficult to walk and has found that reading is a way for him to escape and to pass the time. He is still very chubby, in fact he gained further weight since last post despite dropping one of his steroids. After losing a kilo, he steadily gained a kilo a week until he reached 32kgs.  The doctors have put this down to the second steroid he is taking, which is not supposed to be absorbed, but is in fact being absorbed because his gut hasn't recovered from the radiation yet. He has now completely finished his pred steroid and from today is halving the dose of his second steroid. Progress is being made and it's encouraging to see these medications no longer being needed by him.

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.