Brooke Bone Marrow Operation
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We have been told by brookes specialist's at St Mary's Hospital that brooke only chance at survival is to have a bone marrow transplant, unfortunatly there is not a good enough match on the bone marrow registry.
The ONLY option her parents have been given is to have a IVF PDG baby so taht it is a match to brooke without the DBA gene however the goverment is no longer funding this treatment
Before going for the operation brooke will have to have many tests before to make sure her body is ready for a bonemarrow transplant these willl include
Brooke will undergo intense chemo therapy and radio therapy for up to 2 weeks and 2 weeks later brooke will lose all her hair, eyebrows and eye lashes. she will feel and will be very sick after this treatment and will be most at risk as she will have no workin bone marrow at this point.
Brooke will also develop mouth ulcers in her mouth and in her throat and with her ongoing problems with her esophagus (her throat) her specialist have tols ud that swallowing will be an issue and we will have to watch it carefully and if it becomes to sore for her she will be given a feeding tube.
Brooke will also be given a central line which is is a catheter placed into a large vein in the neck, or in her chest for a few months for blood tests and any other treatment she may need.
Brooke will be off school for an entire year as long as all goes well she will not be able to go swimming or go to any crowded places because of the risk of infection....as her family we are preparing for every eventuality as brooke doesnt just have DIAMOND BLACK FAN ANEMIA ahe has a range of other conditions too ... the scariest prospect of all this is we could do all this to her and it could not work.
there are no guarantees that brooke will survive the pre operation things she will go through, let alone the actually operation. Brooke body may reject the new bone marrow as in which case some of her own has been harvested to put back in ... but its not a given that her body will accept her own bone marrow back .....if she rejects her own bone marrow she will be put on bypass as we fight to find her another match .... as a family we are heartbroken we have tried so hard to get brooke better and we feel we now have to deal with the reality of losing our little angel!!!!
We have been told by brookes specialist's at St Mary's Hospital that brooke only chance at survival is to have a bone marrow transplant, unfortunatly there is not a good enough match on the bone marrow registry.
The ONLY option her parents have been given is to have a IVF PDG baby so taht it is a match to brooke without the DBA gene however the goverment is no longer funding this treatment
Before going for the operation brooke will have to have many tests before to make sure her body is ready for a bonemarrow transplant these willl include
- xrays
- ultra sound scans
- Blood Tests
- Dentist
- Heart Scan
- Breathing Tests
- Kidney Test
- Height
- Weight
Brooke will undergo intense chemo therapy and radio therapy for up to 2 weeks and 2 weeks later brooke will lose all her hair, eyebrows and eye lashes. she will feel and will be very sick after this treatment and will be most at risk as she will have no workin bone marrow at this point.
Brooke will also develop mouth ulcers in her mouth and in her throat and with her ongoing problems with her esophagus (her throat) her specialist have tols ud that swallowing will be an issue and we will have to watch it carefully and if it becomes to sore for her she will be given a feeding tube.
Brooke will also be given a central line which is is a catheter placed into a large vein in the neck, or in her chest for a few months for blood tests and any other treatment she may need.
Brooke will be off school for an entire year as long as all goes well she will not be able to go swimming or go to any crowded places because of the risk of infection....as her family we are preparing for every eventuality as brooke doesnt just have DIAMOND BLACK FAN ANEMIA ahe has a range of other conditions too ... the scariest prospect of all this is we could do all this to her and it could not work.
there are no guarantees that brooke will survive the pre operation things she will go through, let alone the actually operation. Brooke body may reject the new bone marrow as in which case some of her own has been harvested to put back in ... but its not a given that her body will accept her own bone marrow back .....if she rejects her own bone marrow she will be put on bypass as we fight to find her another match .... as a family we are heartbroken we have tried so hard to get brooke better and we feel we now have to deal with the reality of losing our little angel!!!!