Rhianna was diagnosed with Diamond Blackfan Anemia in December 2007. Rhianna had been unwell for several months previously, but no one knew why and put it down to a viral infection.
Rhianna was taken seriously ill in December 2007 and after a blood test which was taken on the afternoon of the 6th of December 2007 we received a phone call from the GP asking us to take her straight to the local children's ward as her HB was only 4.3 (normal is above 13).
We stayed in the hospital for 4 nights before being transferred to a specialist children's hospital where Rhianna had numerous tests done for bloods before having a bone marrow biopsy and a blood transfusion.
Rhianna started steroid treatment in January 2008 and had fortnightly visits to the hospital. As they were reducing the doses her HB kept falling so it was decided that Rhianna would have regular blood transfusions and see how things go. She is currently going every 3 weeks.
Update 17th April 2010
Rhianna is still very poorly in Sheffield on M3 and weÃ¢â‚¬â„¢re unsure when we will be able to bring her home. After the skin biopsy she had last week she got steadily more unwell, her heart rate has increased and her Sats have decreased and she is requiring lots of oxygen to make her comfortable. They have found Aspergillus on her biopsy and think that she may have this on her lungs but are unsure but treating it anyway. It is very hard to treat and sadly can be fatal so we are hoping that she will continue to fight it. All we can do is sit back and wait and provide continued love and support
Update 22nd April 2010
Rhianna is still in hospital and is a little bit better but still has a long way to go. She is being treated for Aspergillus in her skin, Candida in her Gastro/ Digestive tract, and if that isn't enough, on Monday we were told that they think she has Pneumocytitis in her lungs. They wanted to do Bronchoscopy on Monday but it was too high a risk and the anaesthetist refused as said she would have ended up in ICU on a ventilator.
So things very much up and down and we feel like we are on a roller coaster. On a plus the transplant has worked!!
Despite all this Rhianna continues to smile (though not as much) and not moan.