Today is Day Minus 9 for Anabelle. The days are being counted down from day Minus 11 up to her transplant day.
We have now relocated to London (day Minus 11) so that both of us can be there for her treatment. As only one parent can stay on ward overnight we are going to tag team so that we can evenly share the lack of sleep. we also have a room at the Sick Childrens Trust. We are both staying strong for her and will deal with what ever is thrown at us.

Last week we had spent a few days up here whilst Anabelle had her PEG inserted. This is a tube which has been surgically installed into her stomach. From this we were able to inject her anti fungal medicine directly into her stomach. This might sound harsh and it felt really weird doing it but it saved a lot of heart ache by having to pin her down and try a get her to ingest this foul smelling liquid by her mouth. She had a raised temperature after the operation so was kept in an extra night as a matter of caution. We also met another child with Hurlers on the ward who is also awaiting his BMT. His parents were really nice. They were given the diagnosis the same week as we received our 'wonderful' news. Apparently its very unusual to have two hurlers in at the same time.

On Monday with our suitcases in hand and our back packs on we arrived at Waterloo and got a taxi to Great Ormond Street. We were given the protocol out lining Anabelle's treatment and details what drugs she will be having and when. This protocol is based upon treatment given through out Europe so we feel we are in really good hands. 

Still able to smile. Bring it on!!

Yesterday (Day Minus 10) after meeting various members of the BMT team Anabelle had her operation to have a Hickman line inserted. This is basically an additional two lines placed in her chest area so as to enable the speedy insertion of all her drugs. This was done via a vein in her neck. She will be having  an TPN infusion instead of food. This is an infusion that will last approximately 20 hours. As she is having a cord transplant they have found there is better engraftement if the patient refrains form eating for at least 3 weeks. I would struggle with 3 hours!!! One good thing is that she will no longer have to have a cannula fitted with all the hassles that go with that. She also had an infusion of Methylpredisolone which is a steroid to help the chemotherapy.
Now it is day Minus 9 her chemo will start with an infusion of Rabbit ATG (Anti Thymic Globulin) which will last about 8-10 hours. This is the less aggressive chemo and will be given everyday for 4 days then on day Minus 5 the stronger Chemo will be given. She is a little tired and grouchy but has still found time to play with her new toys.!!!