Long time, no post!
I think I can safely say that when I'm quiet (on the blog, before anyone comments!) then things are super busy and/or approaching a kind of slightly frantic normality. So much has happened since the last post, small but significant moments. Lola's chemo continues to run, by the skin of our teeth, to time. That's fantastic as it looks more and more likely that she will make it to some, if not all, of the Year 6 trip to York....something I never dreamed could happen 6 months ago. More importantly, she might be able to start High School, along with her peers, on time.
Lola and I met with the High School SENCO and talked about plans for ensuring that she doesn't miss out, as much as possible, on all that crucial friend-making, settling in time. I almost felt surplus to requirements as Lola confidently chatted away about her experience and hopes for the future. I was so proud of her positive spirit and enthusiasm and incredibly grateful to Chelmo school for keeping her so close to heart and involved, despite her infrequent attendance this year. I feel the same towards Handford Hall on my behalf.
I managed a trip to Orford castle with Greta's class as a parent helper, and LOVED it, despite the embarrassment of having to stop the coach for a child who needed a wee... and just happened to be my daughter. Sadly, we didn't make it to Hebden Bridge for Ben's Charity Walk.... just a little too far too close to chemo. He and pals did amazingly, the photos were fantastic and we felt so proud of them (especially Dot!) THANK YOU, THANK YOU, THANK YOU xxx We have however managed a night in Hertford with the gorgeous Aunties Sarah and Caroline, barbecuing on the island, picnicing in the sun and trawling the park in search of the elusive band we could hear but not see. Fun and ice cream all round.
We have also traded in the big silver number for a super-efficient and (at the moment) clean, black Scenic. Lola somehow managed to sort out a deal involving bluetooth phone and ipod player while I was nervously test-driving.... Junior Apprentice next year?... God, i hope not...
And..... I have been to WORK!! I loved it and felt so privileged to be back. Everyone made me so welcome and I am incredibly in awe of how Clare has managed to do her own job and mine at the same time. Did you ever go home? I am immersing myself gently and back in full force in a few weeks. I honestly didn't appreciate how important my job was to me until I couldn't do it any more. It's not something i will take for granted in future.
Half term has been crazy. Nancy has completed a 5 day sailing course and passed her Stage 2... go Nancy! She LOVED it and has informed she would like to do a course every holiday from now on... watch out Ellen McArthur. I'm hoping she will be able to get lots of practice at Alton Water with Mia and Ollie over the summer. She has even offered to teach me, having watched me hopelessly slide from one side of the dinghy to the other when I went out with Joe!
Greta spent a day at the stables with Eva on a Pony Day and more importantly, became 6 this week! We picnicked on Friday and then on Saturday had a Jungle Party. Thanks so much to Manda and Paul for bravely lending us your house to host the fun. The sun shone and Lola and Nancy were brilliant party organisers... i just watched, then filled bin bags afterwards. Cousin Lucy slept over and Sylvanians ruled the house this morning.
Last, but absolutely not least, we booked a holiday!! Yippeeeeeee.......
Joe, Maya and Luca are spending several weeks of August in England, and for three nights we are camping in a tipi on an eco-campsite in Norfolk! It was a spontaneous but completely unanimous decision. The girls and I were skipping round the kitchen while thumbs up were wiggling across the screen from Italy via Skype. Please, please cross everything for good health and low temperatures (in human beings, I mean!).... we can't wait!
06 June 2010
17 May 2010
at long last..... sorry!
This post is shockingly overdue.... sorry!
No real reason for such a long silence, except life.
Lola is making progress each day with her arm function. It's a long haul and physiotherapy is rarely met with squeals of glee - three lots of 20 minutes a day sounds so manageable, but relies on everything else in the day running smoothly and temperaments being conducive. We manage it most days and intersperse bowling games and throwing plastic frogs at one another to up the interest level.
The new chemotherapy regime has, so far, proved less harsh and Lola has recovered from each round well enough to spend several days a week in school, sit her SATs tests, go go-karting and occasionally spend a few hours with friends. It's fantastic to see more of the old Lola. She is able to enjoy the company of her sisters again and I hear far more laughter than I have in a long while. She has convinced me that she will be flying to Italy in the October half-term, and nothing will stop her. So.... we now all have flights booked!
Sadly, my incredibly special Grandad Ivan died a few weeks ago. He was on a mine-sweeper on the River Orwell during the war and loved this area with a passion. His Altzheimer's meant that for many years he was prone to repetition and he could never talk to us enough about Shotley and the HMS Ganges. The morning after he died, the girls made boats for their Great Grandad with their own special messages to him. After school we went down to the river, skimmed stones across the water and sailed the boats. I will try to attach some of the photos. It was a beautiful and comforting way to say goodbye.
Since then, Greta has recovered from a horrendous bout of chicken pox and looks almost healthy again, Nancy has been braver than I could ever be and stood in front of the school in assembly to sing 'Imagine' unaccompanied and Lola has taken part in an inter-schools Spelling Bee Competition.... life is never dull! Oh... and I managed another far too short but fantastic weekend in Italy. It rained... and rained... but I had the loveliest time. Thanks Laura and Alvise for delicious lunch in Orvieto, to Davide and Helene for crazy ping-pong mania and to Joe for birthday presents, walks, encouraging me to eat my body weight in gelato and helping me to relax. xxx
My on-going mission continues to be the consumption of calories by Lola. She was given special dispensation by the dietician to remain NG free until next chemo on the understanding that her weight rises above 30kilos. It's a hard, frustrating battle and it's not going well. i think she has tried, and rejected, almost every supplement going whilst desperately wanting to achieve the goal. It's heart-rending to see because she is eating quite well, especially in comparison to the few months before her op. Unfortunately, it's not enough to gain weight and the dreaded tube is looming. Sometimes she rages and last week said it was my fault she wasn't gaining as I was encouraging her to enjoy life and so she wasn't sitting around on the sofa enough to gain weight!! Great words of wisdom.....
No real reason for such a long silence, except life.
Lola is making progress each day with her arm function. It's a long haul and physiotherapy is rarely met with squeals of glee - three lots of 20 minutes a day sounds so manageable, but relies on everything else in the day running smoothly and temperaments being conducive. We manage it most days and intersperse bowling games and throwing plastic frogs at one another to up the interest level.
The new chemotherapy regime has, so far, proved less harsh and Lola has recovered from each round well enough to spend several days a week in school, sit her SATs tests, go go-karting and occasionally spend a few hours with friends. It's fantastic to see more of the old Lola. She is able to enjoy the company of her sisters again and I hear far more laughter than I have in a long while. She has convinced me that she will be flying to Italy in the October half-term, and nothing will stop her. So.... we now all have flights booked!
Sadly, my incredibly special Grandad Ivan died a few weeks ago. He was on a mine-sweeper on the River Orwell during the war and loved this area with a passion. His Altzheimer's meant that for many years he was prone to repetition and he could never talk to us enough about Shotley and the HMS Ganges. The morning after he died, the girls made boats for their Great Grandad with their own special messages to him. After school we went down to the river, skimmed stones across the water and sailed the boats. I will try to attach some of the photos. It was a beautiful and comforting way to say goodbye.
Since then, Greta has recovered from a horrendous bout of chicken pox and looks almost healthy again, Nancy has been braver than I could ever be and stood in front of the school in assembly to sing 'Imagine' unaccompanied and Lola has taken part in an inter-schools Spelling Bee Competition.... life is never dull! Oh... and I managed another far too short but fantastic weekend in Italy. It rained... and rained... but I had the loveliest time. Thanks Laura and Alvise for delicious lunch in Orvieto, to Davide and Helene for crazy ping-pong mania and to Joe for birthday presents, walks, encouraging me to eat my body weight in gelato and helping me to relax. xxx
My on-going mission continues to be the consumption of calories by Lola. She was given special dispensation by the dietician to remain NG free until next chemo on the understanding that her weight rises above 30kilos. It's a hard, frustrating battle and it's not going well. i think she has tried, and rejected, almost every supplement going whilst desperately wanting to achieve the goal. It's heart-rending to see because she is eating quite well, especially in comparison to the few months before her op. Unfortunately, it's not enough to gain weight and the dreaded tube is looming. Sometimes she rages and last week said it was my fault she wasn't gaining as I was encouraging her to enjoy life and so she wasn't sitting around on the sofa enough to gain weight!! Great words of wisdom.....
11 April 2010
Our grandpa
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
love and kisses,
Lola, Nancy and Greta
xxxxxxxxxxxxxxxxx
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!
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