Latest News
Bone marrow News 15 Jan 2012
We have been told by brooke specialist that the previous ideas of a bone marrow transplant are no longer an option the match she has isnt good enough and she would survive the operation. The only option that we now have for brooke is for Amber to have an IVF PDG baby so that its a perfect match to brooke. it was a major blow to our family as if she doesnt get a perfect match she will not surpass her 12th birthday. although we have previously thought about this option we do understand some people may not agree with our decision but we have thought long and hard about our decision about all possibilites and outcomes and we can not imagine a life without brooke in it so we will do anything we can to help save her life
Latest Diagnosis 17 june 2011
_
We have been told that brooke will have to have a bone marrow transplant, and her only option is a Matched UNRELATED donor... the risk factor of this paticular donor is very high and the sucess rate is just 39%.
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 beenharvested to put bak 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 he ahve 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 that brooke will have to have a bone marrow transplant, and her only option is a Matched UNRELATED donor... the risk factor of this paticular donor is very high and the sucess rate is just 39%.
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 beenharvested to put bak 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 he ahve tried so hard to get brooke better and we feel we now have to deal with the reality of losing our little angel!!!!