Following our chat with Rhys’ consultant in Bristol on Monday here is our understanding of the months ahead.
Rhys is going to be on antibiotics both before and after his transplant. These will continue until his body is able to fight off infections without them.
Conditioning
On the 16th Rhys will be going into hospital to start the conditioning for the transplant. This consists of two parts.
The first part is the chemotherapy and starts Friday evening and runs through until Sunday.
All of this will be done in the non-isolation part of the BMT unit.
The chemotherapy consists of 3 drugs.
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The first of the drugs which is given on all 3 days, first dose Friday night, is Campath. This is an antibody that removes the lymphocytes from the blood and marrow.
Campath
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reduces the chance of
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rejection of the transplant and
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Graft vs Host Disease
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increases the chance of viral infections
Possible reactions to the drug are
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fever
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rash
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wheezing
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allergic reaction
These usually occur following the first dose.
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The second drug is Cyclophosphamide. This is something that Rhys has already had during his treatment previously and again is given to kill off cells in the blood and marrow.
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At the same time as he’s receiving the Cyclophosphamide Rhys will also receive a drug called Mesna and plenty of fluids to ensure that he is well hydrated and that any toxic material resulting from the Cyclophosphamide is flushed out of his body.
After having all of these it will take about a year for Rhys to recover which means that he’s going to be on acyclovir and septrin for quite some time.
The second part of the conditioning is the radiotherapy. This will be twice a day for 4 days, starting Tuesday and ending Friday. One dose will be in the morning, the other in the afternoon.
Bone Marrow Transplant
On Friday (23rd) Rhys will move into his new home for the next 6 weeks or so as he wanders from non-isolation into his room in the isolation part of the BMT unit.
In the evening he will have the transplant which takes a couple of hours as it’s a transfusion through his Hickman line.
Again as with any of this there are things that can crop up as a result of the transplant.
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Infections whether bacterial, fungal or viral.
The hospital will be monitoring Rhys on a twice weekly basis for signs of adenovirus, CMV (cytomegalovirus) and EBV (Epstein-Barr virus).
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Mucositis.
This could cause problems with feeding if Rhys goes off his food and the feeding tube has to be removed. However, it will be possible to give TPN (Total Parental Nutrition) through his Hickman Line if this is the case.
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Veno-occlusive disease
By days 21 to 28 after the transplant there should be signs of the bone marrow growing. It is at this point that the possibility Graft Vs Host Disease (GVHD) raises its head. If it does occur then a mild case of it is good. A more serious case of it is not so good.
Prevention of GVHD is by means of cyclosporine and methotrexate, the latter being given of days 1, 3, 6 and 11 following the transplant. Treatment for GVHD will be by means of steroids.
Rhys will be in isolation for at least 35 days after the transplant. The actual day he will get out of isolation and back to Sam’s house will be dependent on how well the transplant goes. There’s also the possibility that rather than going directly from isolation to Sam’s Rhys might go via non-isolation for a few days.
Once Rhys is at Sam’s it will be about 2 to 3 weeks before he can possibly return home to Yeovil. Again this is dependent on how well the treatment has gone and he’s recovered from it.
Afterwards
Once Rhys is back home in Yeovil he will be attending Yeovil and Bristol for monitoring and any further treatment on alternate weeks. Attendance at Bristol will be 1 day every other week.
It will be a long time before Rhys has recovered from the transplant and is able to start doing all those things that he’s been able to do in the past. His immune system is going to take a long time to build up and so he will be vulnerable to all kinds of things. Rhys should be able to start back to school part time about 9 months after the transplant which by our reckoning will be about May 2009, just in time for Year 6 SATS – assuming that SATS are still being done in Year 6 then.
It’s still a long road ahead but we’re all getting there.
Links
The links below will take you to some sites that have more information related to
http://www.cancerbackup.org.uk/Home
http://www.pjonline.com/Hospital/Editorial/200002/articles/bonemarrowtransplant.html
http://www.kidshealth.com/parent/infections/lung/adenovirus.html
http://en.wikipedia.org/wiki/Mucositis
http://en.wikipedia.org/wiki/Total_parenteral_nutrition
http://en.wikipedia.org/wiki/Graft-versus-host_disease
