During our time in Bristol we were very fortunate to be given a room at Sam's House, a charity house run by CLIC Sargent for families whose children are having bone marrow transplants. CLIC Sargent are an amazing charity and made our stay in Bristol a much easier experience. One of our good friends, Rowley Aird, has kindly offered to raise money to support CLIC Sargent by running the Ultra-Trail du Mont Blanc, a 167 km trail run that climbs over 9700 metres (equivalent to running from sea level to Everest and then down again!). Whilst Rowley is mad enough to do this sort of thing for fun, we are very honoured that he has chosen to do so in Ellen's name and we would be extremely grateful to anyone who can help him raise some money for such a great cause. Please see following link: www.justgiving.com/utmb4ellen
Saturday, 30 July 2011
Ellen has continued to improve since being back in Cambridge. A combination of factors including her being well, us living so close to Addenbrooke's hospital and a not insignificant amount of parental pressure has meant that she has been allowed to sleep at home and is now being treated as an outpatient. A massive step forward but we are all too aware that things can change quickly and she remains vulnerable to infection or post-transplant complications. She isn't yet eating or drinking sufficient quantities so we need to feed her through her nose tube overnight and throughout the day, as well as administer a cocktail of about a dozen different drugs. We are all, however, enjoying the time at home and sleeping in our own beds!
Tuesday, 26 July 2011
Well, we have left Bristol!!! After what seemed like days of packing, we made an uneventful trip with a very full car from one hospital to another. We are now settled back at Addenbrookes. Ellen was so delighted to be back in Cambridge. It was so wonderful to see her running up and down the ward (chasing her favorite cleaner!). We do not know how long we will be inpatients as we are struggling to keep Ellen's fluid intake up to counterbalance the effects of all the nasty medicines she is on. However, we are firmly one step closer to home......
Friday, 22 July 2011
Ellen is doing well. She has been allowed off the bone marrow transplant unit for a few hours each day and is due to go on "weekend leave" to the charity house where we have been living for the past eight weeks. This means all of us sleeping in a room together, which could be interesting given George's waking patterns! If all goes well we may be transferred back to Cambridge next week. The photo attached is Ellen in her new Rapunzel "Tangled" dress.
Thursday, 14 July 2011
Monday, 11 July 2011
Ellen has had a good couple of days. Her temperatures have settled and George's bone marrow is kicking in. Ellen had a normal neutrophil count this morning for the first time since January! With the help of her new NG tube we are starting to get some feed going and her liver function is also improving. If she continues to have another few good days we MIGHT be out of isolation by the end of the week!
Thursday, 7 July 2011
Ellen has gradually improved over the past few days. Her white blood cell counts, which represent her ability to fight infections, have been steadily increasing. Her temperatures are lower as are her infection markers and abnormal liver functions. She had a CT scan on Monday which looks clear. In short, she is getting clinically better and this is a promising sign of engraftment of the new bone marrow cells. In herself she is a bit brighter which is great to see. We hope all this means she has finally turned a corner and we are making slow progress.
Tuesday, 5 July 2011
Ellen has had a bad few days. Her temperature has rocketed and her liver is struggling. She is still being very sick and on morphine for her mucoscitis. She is very miserable and not herself. We are hoping this is all due to "engraftement syndrome" (i.e. George's bone marrow starting to work) but it may be an infection, which would be very worrying at this stage. We are still waiting for her blood counts to recover which won't happen until George's cells have engrafted and means she remains very vulnerable.