Abbie the Warrior [Post #45 7:30 AM] [I am soooooo tired!]



Our daughter Abbie has been fighting Neuroblastoma here in the UK since Dec 2002. She is now 5 and still fighting. Since the end of May she has gone form being as healthy as ever to very poorly and unable to walk within days, and recovered, only to be knocked down again by the pain of this terrible disease.

Abbie really enjoyed her 'Make a wish' back in June at Nutfield Priory. She came down with a temperature for a few hours on the Sunday at the hotel but was well again in the evening when the butler served her princess menu. She started radiotherapy to her hip her on the Monday and became quite unwell and stopped walking again. The radiotherapy was completed on the Friday and Abbie and Jamie attended the Queens birthday party on the Sunday with Mike, Aunty Susie and myself. The following week Abbie started pallitive oral chemotherapy. She takes Etoposide and Cyclophosmide for three days every week for three weeks and then has a week off. Fortunately Abbie has always responded well to chemo and a few days after starting the chemo became well again and began to walk again. The side effects seem pretty minimal and the blood transfusions have become less frequent - sometimes the gap is up to two weeks but Abbie does seem to need platelets weekly. In the first week of July Abbie was involved in two school concerts and sports day where she won a race in a high speed buggy.

The second and third week in July Abbie was on great form and we completely weaned her off morphine and calpol. We went on holiday to Hastings for a week which she seemed to really enjoy and went swimming daily. The following week she managed three days in school holiday club with Jamie.

The oral chemo therapy cycle stopped for a week and after seeing Abbie's consultant at the Marsden we decided to delay chemo for a second further week as Abbie was neutropenic and her blood counts needed to recover. We were also going on holiday to the New Forest with all her cousins. The delay to the chemo meant Abbie became very poorly again very quickly - all the signs of neuroblastoma came back very quickly - temperatures, night sweats, vomiting, excessive sleeping, pain and general misery. She also developed a dark circle around her right eye which is a neuroblastoma sign. Very quickly we had to put her back on morphine and on Tuesday last week I had to take her to the oncology ward at Southampton hospital where she had a platelet transfusion. The following day I was really worried about her. With hindsight I now realise she was morphined up to the eyeballs as I had just started her on higher dose slow release morphine, but I really thought at that point she only had a few days left. I managed to wake her and took her home on Wednesday morning. Thankfully her blood counts had recovered enough for her to start back on the oral chemotherapy. Again it has worked miracles. Four days later and we are now gradually reducing her morphine again, she is awake most of the day, has started eating again (although only small morcels of food - which is an improvement on no food at all), and is enjoying life again. Considering she has not eaten anything much for about four weeks she is not as skinny as you might think. I blame this on the slow metabollic rates of her parents!

Nikki’s Notes: Abbie’s parents sound like such wonderful people! Since the oral chemo has caused her hair to fall out again, the “hair fairy” came and gave her a princess alarm clock overnight! What a wonderful thing to do!
As Abbie is not doing very well right now, please keep her in your thoughts and prayers! Abbie's website is www.abbieshaw.me.uk