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!
31 March 2010
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.
25 March 2010
and now....
... the final stage of treatment begins, we hope! We are back at Addenbrooks for chemotherapy, five weeks since our last visit here and it's strangely like being back with an old friend. The nurses were all pleased to see Lola looking so well. She currently has over 300 platelets, a neutrophil count of 3 instead of 0.1 and rosy cheeks. She's proudly shown them that she can still write and can even support her arm without a sling, though I think that's strictly forbidden, and two-handed DS playing is NO problem!
Lots of the children are the same too, but at different stages in their treatment. One little fellow is charging around the ward, full of energy and life and singing away, but due for isolation tomorrow as he's started the mega-chemo. Eventually he will need stem cell treatment to recover. Next to us, a teenage girl, diagnosed with osteosarcoma the week before Lola, has had her leg amputated and is learning, incredibly bravely, to walk on a false limb. Another lad is responding well to his leukaemia treatment but has developed diabetes and pancreatitis as a result.
We still haven't had the histology results yet, though word from experienced fellow parents on the ward is that they should be here somewhere. I will be trying to seek out the elusive Amos over the next few days. Lola's treatment path is determined by the percentage necrosis of the tumour cells. This weekend's treatment is the same regardless - VAI. That's one less drug and one different drug. Apparently, the next seven sessions after this are different again, depending on her response path, but again, hopefully, less aggressive than before.
Sorry to all the people who have called, and I haven't got back to. My new home phone is great for skype but doesnt have an answer machine... a fatal flaw! Despite being at home a great deal, the opportunity to ring people is quite limited. I'm really keen to share my attention equally, and balancing physio, washing and dressing help with stories and pick up sticks before school means the chaos (and washing!) tends to hang around til after the girls have gone to bed.
It's been fantastic this week to feel that life is a little like normality. All the girls have had friends for tea on different nights, I've managed to go along to both Nancy and Greta's swimming lessons and I sewed Nancy's cubs badge on in time (Tracey did it last week!). The herb garden is looking great too mum, although I still haven't planted those shrubs...
Lots of the children are the same too, but at different stages in their treatment. One little fellow is charging around the ward, full of energy and life and singing away, but due for isolation tomorrow as he's started the mega-chemo. Eventually he will need stem cell treatment to recover. Next to us, a teenage girl, diagnosed with osteosarcoma the week before Lola, has had her leg amputated and is learning, incredibly bravely, to walk on a false limb. Another lad is responding well to his leukaemia treatment but has developed diabetes and pancreatitis as a result.
We still haven't had the histology results yet, though word from experienced fellow parents on the ward is that they should be here somewhere. I will be trying to seek out the elusive Amos over the next few days. Lola's treatment path is determined by the percentage necrosis of the tumour cells. This weekend's treatment is the same regardless - VAI. That's one less drug and one different drug. Apparently, the next seven sessions after this are different again, depending on her response path, but again, hopefully, less aggressive than before.
Sorry to all the people who have called, and I haven't got back to. My new home phone is great for skype but doesnt have an answer machine... a fatal flaw! Despite being at home a great deal, the opportunity to ring people is quite limited. I'm really keen to share my attention equally, and balancing physio, washing and dressing help with stories and pick up sticks before school means the chaos (and washing!) tends to hang around til after the girls have gone to bed.
It's been fantastic this week to feel that life is a little like normality. All the girls have had friends for tea on different nights, I've managed to go along to both Nancy and Greta's swimming lessons and I sewed Nancy's cubs badge on in time (Tracey did it last week!). The herb garden is looking great too mum, although I still haven't planted those shrubs...
14 March 2010
my bionic girl
Phew............... it's in there!
On Wednesday morning we bundled everything we could find in our house, or so it seemed, into the car and set off for Cadbury World. Never mind surgery, chocolate was definately the number one priority. Met Nanny Dyllis in time for lunch and spent the next four hours finding out about the history of chocolate, production, packaging, marketing and, best of all, eating! Nancy and Greta were bursting with excitement to be missing school for a few days and Lola was just happy to feel well enough to run, jump and climb with her sisters, something I haven't seen her do for 5months. We spent the night in Gloucester with Nanny and Grandpa, celebrating Grandpa's birthday and Mother's Day early while we were all together.
Lola and I left for Birmingham at 7am the next morning. Nancy really sweetly got up at 630 to sit with Lola while she ate breakfast and wave her off at the window. We were looking forward to the glitzy new children's ward at the Royal Orthopedic and charged into Ward 6, eyes wide, only to discover it was just the same! ... oh well, there's something reassuring about familiar spaces I suppose. We unpacked and went off for Lola's MRI scan. By 10am we were back on the ward and thought we could escape for the day. That wasn't to be. Mr Abudu the surgeon, wanted to see Lola and asked us to hang around until he got a break in surgery.
After a game of everything we could find, a cast of Lola's right hand, a film and Grandad John as entertainment, Mr Abudu finally appeared at 730pm. He talked to us about the operation, explaining where the prosthesis would go in, how it would be attached and how long the might take. He was honest with Lola, telling her that she should regain good movement but was unlikely to ever raise her arm beyond a 90' angle due to the muscles he needed to cut and remove in her shoulder. She was remarkably stoical about it, claiming that she never had any intention of being an athlete but would still be learning to ski! That night, the prosthesis was couriered in from Stanmore and I breathed a sigh of relief, having been fully prepared to drive there and collect it myself if it hadn't arrived. It was unpacked with great ceremony in front of a large audience on the ward and we held it, measured it, photographed it and compared it to Lola's arm (pictures to follow once I'm back to my Mac!).
The nurses woke Lola at 6am on Friday morning with toast and water, which she desperately tried to force down, knowing it was the last thing she'd eat for a while. After a couple of bites and a scowl, she lay down, pulled the blanket up around her ears and went back to sleep until 8! She shed a few tears on waking, feeling scared about the day ahead, but after a cuddle and with the distractions of the bustle and noise on the ward, she was soon up and ready for entertainment. The wait for surgery seemed interminable. Nanny Dyllis came up to be with us, which was fantastic, and we took turns playing games, watching films and trying to distract a desperately hungry child.
At 230pm, Lola went down to surgery. I will be forever grateful that she said 'no thank you' when the porters suggested I ride down on the bed with her! Despite a few minutes of absolute terror and tears when she realised it was really happening, Lola took a huge breath, gave me a squeeze and then chatted and joked until the moment she was asleep. With a rabbit under one arm, a monkey under the other and a box for her wobbly tooth on her chest, we kissed her and she was wheeled into theatre.
The next few hours dragged by and I can remember every single thing we did as if it happened in slow motion... including mum's accidental attempt at theft from Tesco, unpacking the shopping from the basket directly into her shopping bag! Just after 5pm, the nurses told us that Lola was in recovery and that we could go down to her. The route was impossible, neither of us had taken in any of the directions and I could feel myself really starting to panic as we turned wrong corners, struggling to find the right place. It felt like forever, but then there she was, lying peacefully on her right side, a tiny oxygen tube on the pillow, pink cheeks and a beaming smile when she saw us. The first thing she showed us was her gap where the wobbly tooth had been, then said "Look mummy, I can still write", and wriggled the fingers on her right hand. There aren't any words to explain how I felt.
We spent the night in the High Dependency Unit and Lola quickly established a reputation for being a girl who knows what she wants! After a dozy few hours, she lifted her head, grinned at Nanny and said, "I'm feeling loads better now!",wolfed down a sandwich and demanded some TV time. I'm ashamed to say I flagged first and, after mum left for Gloucester, folded out my camp bed and persuaded Lola it was time to sleep. The night passed peacefully until 430am. Lola's nerve block had worn off and she woke in excruciating pain. The diazepam didn't work immediately and the nurses set up a morphine drip so that I could administer a dose every 5 minutes until she was comfortable enough to settle. By 530am she was sleeping again, but it was a harrowing hour and I was astounded by her strength of mind, controlling her panic by breathing with me and asking me to hold her head really tightly.
By 7am we were watching 'Annie'and lola was hassling me to phone Aunty Sarah and Caro to bring Nancy and Greta up to visit. They kicked us out of HDU at 10am as a pair of frauds who were taking up a bed unnecessariy! Back on ward 6, the bed pans proved a disaster and a series of bed changes were needed. Harsh as it seems, this forced Lola to move and although terrified of the pain, Lola gritted her teeth and pulled herself up to sitting with the help of a monkey bar. By the afternoon, she was wearing a sling, clothes and had ditched the bedpan for a commode! Nancy brought home-made sushi for lunch (mmmm!) and Greta, a big basket of buns, which she shared with the nurses and then picked all the sweets off.
Martin took over at tea-time and the girls and I went back to Gloucester for Grandpa's birthday dinner. They were glued to my hip all evening. I must have been running on adrenaline because, putting Greta to bed at 830, I realised I couldn't stay awake a moment longer, crawled in next to her and didn't wake for 12 hours.
We've been to see the new-born lambs and a foal today, shared Mother's Day lunch with Great-Nanny Bessie, Nanny Dyllis and two brilliant Aunties, and Lola rang to say she has walked across the ward to the bathroom and is off the morphine drip. She now has a titanium shoulder ball and humerus, a large but beautifully stitched wound and, from somewhere unfathomable, a whole new burst of strength and determination. I am incredibly proud of her courage in facing the frightening prospect of surgery, and bravery in dealing with severe pain and discomfort. For now, and hopefully forever, the cancer is out of her body.
On Wednesday morning we bundled everything we could find in our house, or so it seemed, into the car and set off for Cadbury World. Never mind surgery, chocolate was definately the number one priority. Met Nanny Dyllis in time for lunch and spent the next four hours finding out about the history of chocolate, production, packaging, marketing and, best of all, eating! Nancy and Greta were bursting with excitement to be missing school for a few days and Lola was just happy to feel well enough to run, jump and climb with her sisters, something I haven't seen her do for 5months. We spent the night in Gloucester with Nanny and Grandpa, celebrating Grandpa's birthday and Mother's Day early while we were all together.
Lola and I left for Birmingham at 7am the next morning. Nancy really sweetly got up at 630 to sit with Lola while she ate breakfast and wave her off at the window. We were looking forward to the glitzy new children's ward at the Royal Orthopedic and charged into Ward 6, eyes wide, only to discover it was just the same! ... oh well, there's something reassuring about familiar spaces I suppose. We unpacked and went off for Lola's MRI scan. By 10am we were back on the ward and thought we could escape for the day. That wasn't to be. Mr Abudu the surgeon, wanted to see Lola and asked us to hang around until he got a break in surgery.
After a game of everything we could find, a cast of Lola's right hand, a film and Grandad John as entertainment, Mr Abudu finally appeared at 730pm. He talked to us about the operation, explaining where the prosthesis would go in, how it would be attached and how long the might take. He was honest with Lola, telling her that she should regain good movement but was unlikely to ever raise her arm beyond a 90' angle due to the muscles he needed to cut and remove in her shoulder. She was remarkably stoical about it, claiming that she never had any intention of being an athlete but would still be learning to ski! That night, the prosthesis was couriered in from Stanmore and I breathed a sigh of relief, having been fully prepared to drive there and collect it myself if it hadn't arrived. It was unpacked with great ceremony in front of a large audience on the ward and we held it, measured it, photographed it and compared it to Lola's arm (pictures to follow once I'm back to my Mac!).
The nurses woke Lola at 6am on Friday morning with toast and water, which she desperately tried to force down, knowing it was the last thing she'd eat for a while. After a couple of bites and a scowl, she lay down, pulled the blanket up around her ears and went back to sleep until 8! She shed a few tears on waking, feeling scared about the day ahead, but after a cuddle and with the distractions of the bustle and noise on the ward, she was soon up and ready for entertainment. The wait for surgery seemed interminable. Nanny Dyllis came up to be with us, which was fantastic, and we took turns playing games, watching films and trying to distract a desperately hungry child.
At 230pm, Lola went down to surgery. I will be forever grateful that she said 'no thank you' when the porters suggested I ride down on the bed with her! Despite a few minutes of absolute terror and tears when she realised it was really happening, Lola took a huge breath, gave me a squeeze and then chatted and joked until the moment she was asleep. With a rabbit under one arm, a monkey under the other and a box for her wobbly tooth on her chest, we kissed her and she was wheeled into theatre.
The next few hours dragged by and I can remember every single thing we did as if it happened in slow motion... including mum's accidental attempt at theft from Tesco, unpacking the shopping from the basket directly into her shopping bag! Just after 5pm, the nurses told us that Lola was in recovery and that we could go down to her. The route was impossible, neither of us had taken in any of the directions and I could feel myself really starting to panic as we turned wrong corners, struggling to find the right place. It felt like forever, but then there she was, lying peacefully on her right side, a tiny oxygen tube on the pillow, pink cheeks and a beaming smile when she saw us. The first thing she showed us was her gap where the wobbly tooth had been, then said "Look mummy, I can still write", and wriggled the fingers on her right hand. There aren't any words to explain how I felt.
We spent the night in the High Dependency Unit and Lola quickly established a reputation for being a girl who knows what she wants! After a dozy few hours, she lifted her head, grinned at Nanny and said, "I'm feeling loads better now!",wolfed down a sandwich and demanded some TV time. I'm ashamed to say I flagged first and, after mum left for Gloucester, folded out my camp bed and persuaded Lola it was time to sleep. The night passed peacefully until 430am. Lola's nerve block had worn off and she woke in excruciating pain. The diazepam didn't work immediately and the nurses set up a morphine drip so that I could administer a dose every 5 minutes until she was comfortable enough to settle. By 530am she was sleeping again, but it was a harrowing hour and I was astounded by her strength of mind, controlling her panic by breathing with me and asking me to hold her head really tightly.
By 7am we were watching 'Annie'and lola was hassling me to phone Aunty Sarah and Caro to bring Nancy and Greta up to visit. They kicked us out of HDU at 10am as a pair of frauds who were taking up a bed unnecessariy! Back on ward 6, the bed pans proved a disaster and a series of bed changes were needed. Harsh as it seems, this forced Lola to move and although terrified of the pain, Lola gritted her teeth and pulled herself up to sitting with the help of a monkey bar. By the afternoon, she was wearing a sling, clothes and had ditched the bedpan for a commode! Nancy brought home-made sushi for lunch (mmmm!) and Greta, a big basket of buns, which she shared with the nurses and then picked all the sweets off.
Martin took over at tea-time and the girls and I went back to Gloucester for Grandpa's birthday dinner. They were glued to my hip all evening. I must have been running on adrenaline because, putting Greta to bed at 830, I realised I couldn't stay awake a moment longer, crawled in next to her and didn't wake for 12 hours.
We've been to see the new-born lambs and a foal today, shared Mother's Day lunch with Great-Nanny Bessie, Nanny Dyllis and two brilliant Aunties, and Lola rang to say she has walked across the ward to the bathroom and is off the morphine drip. She now has a titanium shoulder ball and humerus, a large but beautifully stitched wound and, from somewhere unfathomable, a whole new burst of strength and determination. I am incredibly proud of her courage in facing the frightening prospect of surgery, and bravery in dealing with severe pain and discomfort. For now, and hopefully forever, the cancer is out of her body.
09 March 2010
oops... forgot to add...
Thanks, Charlie for this link.... I wanted to share it with others.......http://www.bechildcanceraware.org/2010/02/jazmine-lewis-by-jadi-lewis/
AND... belated congratulations to you ALL on the arrival of Bobby.... the minute we're back from Brum...!!
AND... belated congratulations to you ALL on the arrival of Bobby.... the minute we're back from Brum...!!
surgery date...
Long, long overdue I know.... where to begin.. Lola spiked a temperature the weekend before last and ended up with a short spell in Ipswich hospital. One bag of platelets, two bags of blood and 48 hours of IV anti-biotics later and she was ready to roll, BUT she needed a kidney filtration test and echocardiogram first, so she was contained for another day and almost clawing the walls. Freedom beckoned at 230pm on Tuesday and Lola had a fantastic week, going from strength to strength as her bone marrow recovered from the chemo. Its amazing to see her with colour and energy, skipping around the kitchen and helping herself to snacks from the cupboard. Despite being ng - free for almost a month, her weight has remained a stable 30kg and she is eating more than I have seen for 5 months. She's been at school almost every day for a week and is even staying for school lunch!
Surgery.... that's been a little more complicated and probably the reason I haven't updated for a while. Several weeks ago we were given the 8th, 11th or 12th March as surgery dates but told confirmation would not be given of the exact date until Weds or Thurs of last week. I spoke to the Macmillan Nurse and Lola was all revved up and ready to face the surgeon. Wednesday came and went... no news. Patient as I am (??) I managed to wait until 10am on Thurs before calling Birmingham, only to be told that the order for Lola's prosthetic arm was still sitting on the surgeon's desk waiting to be signed. This meant that surgery wouldn't take place this week as the limb takes 7 to 10 days to make. I persistently phoned for updates but was not able to speak to the surgeon or Lola's oncologist. Eventually, Amos Burke, her Addenbrookes oncologist, called me back and was hugely upset about the delay but unable to offer a solution.
By yesterday morning I was turning cart-wheels with frustration, called Birmingham for an update and was told, to my horror, that the form was still unsigned and the prosthesis remained unordered. Worse still, when Amos called me back, he was clearly very upset and reluctantly broke the news to me that Lola would not have surgery for another 3 weeks as the surgeon was going on holiday, that she would require an additional 4 day stint of chemo to cover the delay period and that, having had extra chemo, she would have to be withdrawn from the Euro-Ewing 99 research programme she has been a part of. In short, despite having had stem cells harvested in preparation for a mega-chemo if the histology is not good, she would no longer be eligible for the treatment!
I can't begin to explain how I felt about this information. So far, despite the harrowing nature of the treatment and the sadness of seeing my child in discomfort, distress, lose weight, hair and confidence, I have always felt reassured that she is getting the best possible treatment available to her and therefore, has the best possible chance of a full recovery. To know that, through someone's carelessness, she would need to go through an unnecessary dose of toxic medicine which her body is finding it increasingly hard to recover from and then face the possibility that her chance to receive potentially life-saving treatment was now denied to her, was heart-breaking, frightening and infuriating in equal measure.
Having cried, stomped and turned in circles of ever-increasing frustration, I knew I needed to persist until we had an outcome. I wasn't prepared to accept that Lola was going to be removed from the research trial. The hardest thing was knowing who to contact and where to find them. Leaving messages and waiting for the phone to ring can be the most agonising time. I will never know whether a bit of family string-pulling influenced the situation, or my mention of 'medical negligence', but I received a phone call yesterday afternoon to say that engineers were building the prosthesis in Stanmore at that very moment, that it was due to be couriered to Birmingham and that Lola would be added to Mr Abudu's list on Friday afternoon! I think I ran the full range of emotions yesterday afternoon... thanks Joe for putting up with a wet shoulder, for forcing me to write it all down and for just sitting it out with an inexhaustible supply of love and patience xx
So.....I speedily shopped for hoodies and books this morning, packed 4 bags and put the contents of my fridge into the bin! The girls (excitedly!) told their teachers and collected some homework. Tomorrow, bright and early, Lola, Nancy, Greta and I head off to Cadbury World (thanks Elaine for that genius idea 5 months ago!). We meet Nanny and Grandpa, eat too much chocolate and then throw up in the car on the way back to Gloucester for the night. On Thursday morning, Lola and I will be in Birmingham Royal Orthopaedic for 830am, book in, get MRI scanned (again!) and meet the surgeon. We'll explore Ward 6, unpack our ENORMOUS bags and bide our time until she's taken to theatre sometime on Friday afternoon. My heart is beating hard but she is so ready........
Surgery.... that's been a little more complicated and probably the reason I haven't updated for a while. Several weeks ago we were given the 8th, 11th or 12th March as surgery dates but told confirmation would not be given of the exact date until Weds or Thurs of last week. I spoke to the Macmillan Nurse and Lola was all revved up and ready to face the surgeon. Wednesday came and went... no news. Patient as I am (??) I managed to wait until 10am on Thurs before calling Birmingham, only to be told that the order for Lola's prosthetic arm was still sitting on the surgeon's desk waiting to be signed. This meant that surgery wouldn't take place this week as the limb takes 7 to 10 days to make. I persistently phoned for updates but was not able to speak to the surgeon or Lola's oncologist. Eventually, Amos Burke, her Addenbrookes oncologist, called me back and was hugely upset about the delay but unable to offer a solution.
By yesterday morning I was turning cart-wheels with frustration, called Birmingham for an update and was told, to my horror, that the form was still unsigned and the prosthesis remained unordered. Worse still, when Amos called me back, he was clearly very upset and reluctantly broke the news to me that Lola would not have surgery for another 3 weeks as the surgeon was going on holiday, that she would require an additional 4 day stint of chemo to cover the delay period and that, having had extra chemo, she would have to be withdrawn from the Euro-Ewing 99 research programme she has been a part of. In short, despite having had stem cells harvested in preparation for a mega-chemo if the histology is not good, she would no longer be eligible for the treatment!
I can't begin to explain how I felt about this information. So far, despite the harrowing nature of the treatment and the sadness of seeing my child in discomfort, distress, lose weight, hair and confidence, I have always felt reassured that she is getting the best possible treatment available to her and therefore, has the best possible chance of a full recovery. To know that, through someone's carelessness, she would need to go through an unnecessary dose of toxic medicine which her body is finding it increasingly hard to recover from and then face the possibility that her chance to receive potentially life-saving treatment was now denied to her, was heart-breaking, frightening and infuriating in equal measure.
Having cried, stomped and turned in circles of ever-increasing frustration, I knew I needed to persist until we had an outcome. I wasn't prepared to accept that Lola was going to be removed from the research trial. The hardest thing was knowing who to contact and where to find them. Leaving messages and waiting for the phone to ring can be the most agonising time. I will never know whether a bit of family string-pulling influenced the situation, or my mention of 'medical negligence', but I received a phone call yesterday afternoon to say that engineers were building the prosthesis in Stanmore at that very moment, that it was due to be couriered to Birmingham and that Lola would be added to Mr Abudu's list on Friday afternoon! I think I ran the full range of emotions yesterday afternoon... thanks Joe for putting up with a wet shoulder, for forcing me to write it all down and for just sitting it out with an inexhaustible supply of love and patience xx
So.....I speedily shopped for hoodies and books this morning, packed 4 bags and put the contents of my fridge into the bin! The girls (excitedly!) told their teachers and collected some homework. Tomorrow, bright and early, Lola, Nancy, Greta and I head off to Cadbury World (thanks Elaine for that genius idea 5 months ago!). We meet Nanny and Grandpa, eat too much chocolate and then throw up in the car on the way back to Gloucester for the night. On Thursday morning, Lola and I will be in Birmingham Royal Orthopaedic for 830am, book in, get MRI scanned (again!) and meet the surgeon. We'll explore Ward 6, unpack our ENORMOUS bags and bide our time until she's taken to theatre sometime on Friday afternoon. My heart is beating hard but she is so ready........
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