Tonight we are all thinking about you Grandpa Peter. We want you to feel better and to tell us to stop banging down the stairs.
love and kisses,
Lola, Nancy and Greta
xxxxxxxxxxxxxxxxx
11 April 2010
01 April 2010
Good bloods today and no transfusion needed .... Lola even has neutrophils! End of term civvies day and she's made it in for lunch and hopefully, the afternoon. Next blood test is Monday morning, so fingers crossed we all get to enjoy the Easter holidays, eat copious amounts of chocolate and put on some serious kilos!
31 March 2010
AAAGGGGHHH...............!! Food frustration. You can mix as many teaspoons of Maxijul carbohydrate powder into spaghetti bolognese, white sauce, pesto, custard, apple pie etc etc as you like, but unless they are actually eaten they do not help weight gain! I am losing track of the times I am emptying the bin which fills up with rejected food. Poor Lola, she is sick to death of me 'accidentally' leaving chocolate buttons around, cutting sandwiches into cartoon characters and sneaking Polycal into a glass of ribena. Whilst Nancy, Greta and I plough our way through all butter pastry, custard made with cream and super rich pancakes with chocolate spread, Lola manages a few nibbles, feels sick and has to lie down. She's down another 0.6kg ... basically 2kg to gain in 2 weeks if she is to avoid an ng tube.
She is vehemently against the idea and I don't blame her. It makes her look poorly, feels disgusting and has a tendancy to reappear if she is being sick. BUT, for lola it did work. She has managed to remain around 30kg throughout the treatment so far and the feeds are completely balanced so her diet was complete, despite being limited, while she was on night feeds. It was also a quick and easy way of administering nasty-tasting medication. Things may turn around over Easter I suppose ... if not, I'm not sure I envy the poor nurse who gets the job of popping one down during our next in-stay...
I spoke to Amos a few days ago and he confirmed that the histology results did indeed indicate a 'brilliant response'. In terms of treatment, it means no high dosage chemo/stem cell replacement and no radiation. Lola will continue to have 7 more doses of VAI chemotherapy at the same 3 week intervals. If all goes according to time, beds are available and infections stay away, then Lola would be due to complete her treatment programme towards the end of August. Amos would not be drawn into a discussion on the implications of the histology on a longer term prognosis, but did say that it obviously places lola in a much more favourable group. I think I knew that answer but had to ask anyway!
Bloods tomorrow and with my untrained eye and Lola's self-awareness, I think she is not yet anaemic enough for a transfusion. Could be wishful thinking, but I'm sure I see colour in her cheeks and lips!
She is vehemently against the idea and I don't blame her. It makes her look poorly, feels disgusting and has a tendancy to reappear if she is being sick. BUT, for lola it did work. She has managed to remain around 30kg throughout the treatment so far and the feeds are completely balanced so her diet was complete, despite being limited, while she was on night feeds. It was also a quick and easy way of administering nasty-tasting medication. Things may turn around over Easter I suppose ... if not, I'm not sure I envy the poor nurse who gets the job of popping one down during our next in-stay...
I spoke to Amos a few days ago and he confirmed that the histology results did indeed indicate a 'brilliant response'. In terms of treatment, it means no high dosage chemo/stem cell replacement and no radiation. Lola will continue to have 7 more doses of VAI chemotherapy at the same 3 week intervals. If all goes according to time, beds are available and infections stay away, then Lola would be due to complete her treatment programme towards the end of August. Amos would not be drawn into a discussion on the implications of the histology on a longer term prognosis, but did say that it obviously places lola in a much more favourable group. I think I knew that answer but had to ask anyway!
Bloods tomorrow and with my untrained eye and Lola's self-awareness, I think she is not yet anaemic enough for a transfusion. Could be wishful thinking, but I'm sure I see colour in her cheeks and lips!
28 March 2010
histology
Last night, after a few days in Addenbrookes with Lola on her first chemo since surgery, I arrived home to a letter from the Royal Orthopaedic Hospital in Birmingham.
It reads,
"I am pleased to inform you that the tumour has been completely resected from Dolores right humerus and there was indeed 100% necrosis. This is obviously very good news and we have informed the oncologist that she may resume her post-operative chemotherapy."
Nancy and I read and reread the letter, then struggled to reach Lola and Martin by phone. My heart was exploding with happiness that the chemotherapy that had been so gruelling for Lola appeared to have killed all the Ewing's cells in the tumour... ALL of them. The best possible news we could wish for at this point in the treatment. Lola's reaction was, typically, understated... "Great...".. and back to the film!
Despite obviously feeling elated at the result, in contrast, I am all over the place! Having passed the half way mark, with good, no, great response under our belts, for some unknown reason I seemed to realise last night that Lola has, or had, cancer. All the way through the treatment so far, I have tried really hard to remain pragmatic, take each day and value it as it comes, remain aware of all the possible outcomes. I have never sought out statistics, preferring to look at my child as an individual. I have certainly come to believe in the strength of united positivity, hope and love ... it's helping Lola, all of us, through some tough times.
I can't explain the emotions that surfaced with the letter except that, when I acknowledged good news and real hope, perhaps I allowed myself to think a little more about what's happening. Until we have a consultation with Amos, I'm not clear what the histology results mean for Lola. I want to hear that the cancer is gone, forever, and that Lola is better. I know that no one can tell us that, only time. I know too that she still has to complete the next series of treatment, I think 7 more sessions of chemotherapy over the next 6 months or so, so the risks of neutropenia, temperatures, fungal infections etc are still there, and weight loss. The difference is, I suppose, that we now have proof that the chemotherapy works for Lola, that it did kill the tumour, and that she isn't going through the discomfort in vain.
It reads,
"I am pleased to inform you that the tumour has been completely resected from Dolores right humerus and there was indeed 100% necrosis. This is obviously very good news and we have informed the oncologist that she may resume her post-operative chemotherapy."
Nancy and I read and reread the letter, then struggled to reach Lola and Martin by phone. My heart was exploding with happiness that the chemotherapy that had been so gruelling for Lola appeared to have killed all the Ewing's cells in the tumour... ALL of them. The best possible news we could wish for at this point in the treatment. Lola's reaction was, typically, understated... "Great...".. and back to the film!
Despite obviously feeling elated at the result, in contrast, I am all over the place! Having passed the half way mark, with good, no, great response under our belts, for some unknown reason I seemed to realise last night that Lola has, or had, cancer. All the way through the treatment so far, I have tried really hard to remain pragmatic, take each day and value it as it comes, remain aware of all the possible outcomes. I have never sought out statistics, preferring to look at my child as an individual. I have certainly come to believe in the strength of united positivity, hope and love ... it's helping Lola, all of us, through some tough times.
I can't explain the emotions that surfaced with the letter except that, when I acknowledged good news and real hope, perhaps I allowed myself to think a little more about what's happening. Until we have a consultation with Amos, I'm not clear what the histology results mean for Lola. I want to hear that the cancer is gone, forever, and that Lola is better. I know that no one can tell us that, only time. I know too that she still has to complete the next series of treatment, I think 7 more sessions of chemotherapy over the next 6 months or so, so the risks of neutropenia, temperatures, fungal infections etc are still there, and weight loss. The difference is, I suppose, that we now have proof that the chemotherapy works for Lola, that it did kill the tumour, and that she isn't going through the discomfort in vain.
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