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???"
Seth
Friday, November 16, 2012
Wednesday, November 7, 2012
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.
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.
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