Hi there Folks,
As promised here is part II of this latest blog update. We hope you have all had a good day and thanks for joining us this evening.
As promised here is part II of this latest blog update. We hope you have all had a good day and thanks for joining us this evening.
So, from yesterday we wanted to update you all with a few things that have been happening here in the life of Miss Phoebe.
Firstly, our last couple of visits to The Royal Manchester Children’s hospital have been positive with regards to Rob’s opinion of Phoebe’s progress. We have been a little disappointed that some of the cells have been slowly reducing in percentages since we have been discharged home but Rob remains positive that the graft will provide her with enough cells to stop HLH from developing. The immune system continues to amaze us as we learn more and more about cells, genetics and the varying conditions you become aware of when talking to other parents.
Phoebe continues to thrive and increasing her weight at a regular rate, I have to say that’s like music to my ears when I think its a miracle that she is going through the normal aspects of growth and behaviour in a two year old. We are managing to get out and about now and slowly making our way around to catching up with family and friends. Although Phoebe’s immune system is working well we are continuing to be mindful of avoiding crowded areas and places where there is a lot of children. Over the next few months the childhood immunisation programme will begin again for her as these were eradicated when Phoebe received her chemotherapy treatment. So for now until we finish the courses of immunisations we will continue to be sensible with Phoebe mixing and to look forward to her enjoying some swimming too. She is fascinated with water and would play with this all day, her uncle Rob aka Bert has very kindly asked if he can teach Phoebe to swim. Oh by the way if anyone would like swimming lessons or swim/snorkel parties, give Gareth, Vicki-Ann, or Rob a call at GUST on 07999 237846 or you can book online at www.swimteaching.co.uk. Take a look....
It has been great to spend some time with friends and Phoebe has rea
lly enjoyed company with other children. Whilst the weather has been relatively mild for this time of year we try and get out for walks when we can and have thoroughly enjoyed walks at Downs Banks in Barlaston and Rudyard Lake. Phoebe just loves being out and about walking, splashing and climbing when we have been there with friends. Its also been nice to have some friends visit us at home with their children and has been interesting to watch Phoebe’s interaction with them especially when asked if they can play with he
r toys and sharing in general, like most children it may take a little time to adjust to different company but you can see she begins to relax and enjoys playing with them after a little while.
Phoebe took great delight in visiting our local parish fair at St Gregory’s Sch
ool on Saturday, it was a great success and as the crowds subsided Phoebe was able to come and have a look around, once Santa queue had disappeared we decided to pay him a visit. With a little piece of cake in hand along with an Angel pin for him we walked down the corridor, she was very dubious about entering the grotto and clung onto me for dear life!! With as much reassurance as we could muster she sat on my knee, with some trepidation she passed the cake to Santa which had to be via Nana Gwen and myself!! Without spending more than a minute she braved the visit and shot out of there as quick as she could…although she had to turn back just as she was about to leave as she forgot her Santa gift, Phoebe grabbed it, remembering to say Thank you and ran as quick as she could!!! It was lovely to see her enjoying the freedom and helping out on the church piety stall with Nana Margaret…organising the display and stock whilst eating homemade cakes like they were going out of fashion, it was a joy. Father J
ohn (or as Phoebe calls him Farmer John) popped over to say hello and was so pleased to see her especially enjoying the cakes and mainly wearing them too!! We finished off our Sa
turday afternoon with a great visit from Mark (Easty), Jan, Freya and Noah who absolutely adore Phoebe, she just thrives when spending time with other children and it was a joy to see them all playing. I must just mention a special hello to you all and thanks for coming to see us, let’s catch up again soon.
As well as Phoebe continuing to amaze us each day with her speech, she is really beginning to show her personality, like all children she can be a cheeky monkey and we can really see her sense of humour developing, she’s as daft as us. Phoebe is developing so quickly and at this moment we are moving from nappies to the potty, she is getting to grips with the concept so hopefully it won’t be too long before we can say goodbye to nappies….another great leap for Phoebe...well done Sweetheart!!!. This year Phoebe has really enjoyed experiencing fireworks (quiet ones!!) and lanterns particularly during a fabulous gathering at Manju and Ajay’s in Birmingham, thank you guys for making us feel so welcome, you are perfect hosts, Mother Manju the ultimate provider!! It was great for us to make it over this year. Last year we had just been told Phoebe would need a transplant and would need to avoid gatherings in case she picked up any viruses prior to being admitted. Wow…everything that happens in a year!!!!
Now for all of you who have travelled this journey with us, you have been on this rollercoaster and know that we speak honestly about out emotions especially when we have dealt with the ups and downs, trials and tribulations throughout treatment and recovery. For some of you who visited the Bone Marrow Unit, you may remember that spending time there you begin to feel like part of a family. As you are in semi-isolation with not a great deal to do you begin friendships with staff and families and look forward to hearing the progress of each of the children. Although Phoebe seemed to have progressed well and quickly through her treatment and transplant, its not always the same for other children and the negative sides to a transplant is that it can have all kinds of complications.
Sadly, we were recently contacted by our specialist nurse Jo Page from Manchester who informed us that Ella Wright, who was on the unit at the same time as Phoebe, passed on after the most intense, arduous and incredibly brave battle with complications following her transplant.
We were deeply saddened and so shocked to hear the news from Jo but as Ella also had a public life she did not want us to hear of this via the media. Ella along
with her brother Sam have made an incredible impact in raising awareness of Bone Marrow Donation; they have been the faces and story for major campaigns for the Anthony Nolan Trust. Ade and I feel immensely proud of her and how she fought her battle with complete dignity, we’re truly honoured to have met Ella and her lovely family. We attended the celebration of her life in Southport; the church was full to the brim with everyone coming to pay their respects to an amazing young girl, each of us standing proud to have known or met her. The ceremony took place with everyone wearing a touch of pink for Ella and it was beautiful to see her school friends each wearing a pink carnation and singing for her in the school choir, and finally releasing pink balloons with a round of applause for her. It was incredibly moving. Ella will always be a part of this journey with us and we continue to remember her, Sally, Damian, Sam and all the family in our thoughts and prayers. We ask for all our friends to send all your prayers and positive energies their way xxx
http://www.liverpoolecho.co.uk/tags/ella-wright.
Firstly, our last couple of visits to The Royal Manchester Children’s hospital have been positive with regards to Rob’s opinion of Phoebe’s progress. We have been a little disappointed that some of the cells have been slowly reducing in percentages since we have been discharged home but Rob remains positive that the graft will provide her with enough cells to stop HLH from developing. The immune system continues to amaze us as we learn more and more about cells, genetics and the varying conditions you become aware of when talking to other parents.
Phoebe continues to thrive and increasing her weight at a regular rate, I have to say that’s like music to my ears when I think its a miracle that she is going through the normal aspects of growth and behaviour in a two year old. We are managing to get out and about now and slowly making our way around to catching up with family and friends. Although Phoebe’s immune system is working well we are continuing to be mindful of avoiding crowded areas and places where there is a lot of children. Over the next few months the childhood immunisation programme will begin again for her as these were eradicated when Phoebe received her chemotherapy treatment. So for now until we finish the courses of immunisations we will continue to be sensible with Phoebe mixing and to look forward to her enjoying some swimming too. She is fascinated with water and would play with this all day, her uncle Rob aka Bert has very kindly asked if he can teach Phoebe to swim. Oh by the way if anyone would like swimming lessons or swim/snorkel parties, give Gareth, Vicki-Ann, or Rob a call at GUST on 07999 237846 or you can book online at www.swimteaching.co.uk. Take a look....
It has been great to spend some time with friends and Phoebe has rea
lly enjoyed company with other children. Whilst the weather has been relatively mild for this time of year we try and get out for walks when we can and have thoroughly enjoyed walks at Downs Banks in Barlaston and Rudyard Lake. Phoebe just loves being out and about walking, splashing and climbing when we have been there with friends. Its also been nice to have some friends visit us at home with their children and has been interesting to watch Phoebe’s interaction with them especially when asked if they can play with he
r toys and sharing in general, like most children it may take a little time to adjust to different company but you can see she begins to relax and enjoys playing with them after a little while.Phoebe took great delight in visiting our local parish fair at St Gregory’s Sch
ool on Saturday, it was a great success and as the crowds subsided Phoebe was able to come and have a look around, once Santa queue had disappeared we decided to pay him a visit. With a little piece of cake in hand along with an Angel pin for him we walked down the corridor, she was very dubious about entering the grotto and clung onto me for dear life!! With as much reassurance as we could muster she sat on my knee, with some trepidation she passed the cake to Santa which had to be via Nana Gwen and myself!! Without spending more than a minute she braved the visit and shot out of there as quick as she could…although she had to turn back just as she was about to leave as she forgot her Santa gift, Phoebe grabbed it, remembering to say Thank you and ran as quick as she could!!! It was lovely to see her enjoying the freedom and helping out on the church piety stall with Nana Margaret…organising the display and stock whilst eating homemade cakes like they were going out of fashion, it was a joy. Father J
ohn (or as Phoebe calls him Farmer John) popped over to say hello and was so pleased to see her especially enjoying the cakes and mainly wearing them too!! We finished off our Sa
turday afternoon with a great visit from Mark (Easty), Jan, Freya and Noah who absolutely adore Phoebe, she just thrives when spending time with other children and it was a joy to see them all playing. I must just mention a special hello to you all and thanks for coming to see us, let’s catch up again soon.As well as Phoebe continuing to amaze us each day with her speech, she is really beginning to show her personality, like all children she can be a cheeky monkey and we can really see her sense of humour developing, she’s as daft as us. Phoebe is developing so quickly and at this moment we are moving from nappies to the potty, she is getting to grips with the concept so hopefully it won’t be too long before we can say goodbye to nappies….another great leap for Phoebe...well done Sweetheart!!!. This year Phoebe has really enjoyed experiencing fireworks (quiet ones!!) and lanterns particularly during a fabulous gathering at Manju and Ajay’s in Birmingham, thank you guys for making us feel so welcome, you are perfect hosts, Mother Manju the ultimate provider!! It was great for us to make it over this year. Last year we had just been told Phoebe would need a transplant and would need to avoid gatherings in case she picked up any viruses prior to being admitted. Wow…everything that happens in a year!!!!
Now for all of you who have travelled this journey with us, you have been on this rollercoaster and know that we speak honestly about out emotions especially when we have dealt with the ups and downs, trials and tribulations throughout treatment and recovery. For some of you who visited the Bone Marrow Unit, you may remember that spending time there you begin to feel like part of a family. As you are in semi-isolation with not a great deal to do you begin friendships with staff and families and look forward to hearing the progress of each of the children. Although Phoebe seemed to have progressed well and quickly through her treatment and transplant, its not always the same for other children and the negative sides to a transplant is that it can have all kinds of complications.
Sadly, we were recently contacted by our specialist nurse Jo Page from Manchester who informed us that Ella Wright, who was on the unit at the same time as Phoebe, passed on after the most intense, arduous and incredibly brave battle with complications following her transplant.
We were deeply saddened and so shocked to hear the news from Jo but as Ella also had a public life she did not want us to hear of this via the media. Ella along
with her brother Sam have made an incredible impact in raising awareness of Bone Marrow Donation; they have been the faces and story for major campaigns for the Anthony Nolan Trust. Ade and I feel immensely proud of her and how she fought her battle with complete dignity, we’re truly honoured to have met Ella and her lovely family. We attended the celebration of her life in Southport; the church was full to the brim with everyone coming to pay their respects to an amazing young girl, each of us standing proud to have known or met her. The ceremony took place with everyone wearing a touch of pink for Ella and it was beautiful to see her school friends each wearing a pink carnation and singing for her in the school choir, and finally releasing pink balloons with a round of applause for her. It was incredibly moving. Ella will always be a part of this journey with us and we continue to remember her, Sally, Damian, Sam and all the family in our thoughts and prayers. We ask for all our friends to send all your prayers and positive energies their way xxxhttp://www.liverpoolecho.co.uk/tags/ella-wright.
How can you help as a potential bone marrow donor?
POTENTIAL bone marrow donors need to be aged between 18 and 40 and in good health to join the Anthony Nolan Trust register.
Donors who are male or from ethnic minorities are in short supply.
To join the register call 0901 882 2234 and an information pack, medical form and a blood sampling kit will be sent to your GP surgery. Your small blood sample will then be tissue-typed and the information held on a database of donors which is regularly searched for the patients who are looking for a match.
Log on to www.anthonynolan.org.uk in the UK or www.bmdw.org to find bone marrow registers from around the world. For those between 40 and 44 you can join The British Bone Marrow Registry by calling 0845 771 1711.
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We continue to take each day as it comes and appreciate the simple things in everyday life, just enjoying spending time together at home is precious. Even though the weather may be rainy we can stop for a while and enjoy the quiet at home...did i just say quiet with Miss Phoebe around!! Life carries on as normal as it can be and last week we decided it was time for a haircut, Phoebe’s hair has grown back quite thick and a couple of shades darker since the transplant. Sitting in the chair, Phoebe stayed amazingly stull and you could see she rather liked this pampered business. I have to say she was extremely good bless her and having time for a bit of therapy myself we left looking far more tidy and stylish than when we arrived looking like a banshee from the wind and rain!!
Phoebe has been enjoying the time spent with her grandparents whilst Ade and I are at work, they are incredible bless them for looking after her and us. Phoebe is great company and they just love spending time with her. I am very blessed to be able to have a little time to myself and last Thursday, my cousin Margaret and I headed down to the NEC for the festive gift fair, it was a relaxing day and we look forward to heading down to the ClothesShow Live, my only hope it that I don’t get nabbed by Gok, must remember to choose my outfit wisely!!!
We are pleased to tell you that on our visit to Manchester hospital last week, Jo welcomed us with a lovely card from the donor, it has been a little while since we have heard from her, she can’t quite believe that is nearly a year since being given the wonderful news that she was chosen as a donor, we enjoy writing to each other and the mere thought that one day we’re going to meet brings a lump to my throat and instant tears. We feel have a really good rapport with each other and its rather interesting when you think about how to write to someone who you don’t know and can’t tell them anything personal!! No doubt in a year's time I will be speaking of her with more familiarity and will hopefully get to meet up at some point…now that’s something to look forward to!!
We have a fairly busy schedule in December (well Phoebe rather than us…she’s the one with all the party invitations!!) and look forward to meeting up with you….don’t forget to let us know when you guys are free….xxx
Some special mentions tonight for Molly, Eve and Madeline and Darcy…my lovely god-daughters!! Hope you are all well xx. Madeline, we hope you enjoyed your sleepover with us, it was lovely to spend some time with you xx
Darcy celebrated her 2nd Birthday on Friday, aaah, Happy Birthday Sweetheart.
Phoebe has been enjoying the time spent with her grandparents whilst Ade and I are at work, they are incredible bless them for looking after her and us. Phoebe is great company and they just love spending time with her. I am very blessed to be able to have a little time to myself and last Thursday, my cousin Margaret and I headed down to the NEC for the festive gift fair, it was a relaxing day and we look forward to heading down to the ClothesShow Live, my only hope it that I don’t get nabbed by Gok, must remember to choose my outfit wisely!!!
We are pleased to tell you that on our visit to Manchester hospital last week, Jo welcomed us with a lovely card from the donor, it has been a little while since we have heard from her, she can’t quite believe that is nearly a year since being given the wonderful news that she was chosen as a donor, we enjoy writing to each other and the mere thought that one day we’re going to meet brings a lump to my throat and instant tears. We feel have a really good rapport with each other and its rather interesting when you think about how to write to someone who you don’t know and can’t tell them anything personal!! No doubt in a year's time I will be speaking of her with more familiarity and will hopefully get to meet up at some point…now that’s something to look forward to!!
We have a fairly busy schedule in December (well Phoebe rather than us…she’s the one with all the party invitations!!) and look forward to meeting up with you….don’t forget to let us know when you guys are free….xxx
Some special mentions tonight for Molly, Eve and Madeline and Darcy…my lovely god-daughters!! Hope you are all well xx. Madeline, we hope you enjoyed your sleepover with us, it was lovely to spend some time with you xx
Darcy celebrated her 2nd Birthday on Friday, aaah, Happy Birthday Sweetheart.
My Brother Gary started work with a new company...Congratulations hun xx
Thanks Helena for our nice catch up on Saturday morning, see you Thursday at the Playgroup. xx
Auntie Winnie’s Birthday on Thursday, much love to you for a special day and hopefully a good win a the Bingo!!!
Thanks Helena for our nice catch up on Saturday morning, see you Thursday at the Playgroup. xx
Auntie Winnie’s Birthday on Thursday, much love to you for a special day and hopefully a good win a the Bingo!!!
Special hello to Freya and Noah, lovely to see you and look forward to you both having a sleep over with Phoebs xxx
Jo Spro, your mum is in our thoughts and prayers for a speedy recovery, may the angels you’ve met at the hospital continue to surround you and bring you strength xxx
Sarah, you are never out of my thoughts xxx
Tracey, we are thinking about you all and hope William is feeling much better xxx
Well, its 23.50pm now and I need to insert a couple of photos for you so I leave you for now and look forward to updating you again in December.
Thanks to everyone for your continued love and support, we are very blessed xxx
Sleep well xx
Lynn, Ade, Phoebe and Spirit Eleanor xxxx
3 comments:
Soooooo so so so good to hear your news! Phoebe looks awesome in the pics and I have loved hearing of her incredible progress - and almost potty trained! Goodness!!! Is there no end to her talents?! I am so happy to hear you have all been doing so well, and as you said, wow where you have come from in the past year, it's been quite the journey. My thoughts are definitely with little Ella and her family, there are few people who understand how her family feels than you two.
TONS, literally TONS of love to you all, it has quite made me night reading your update.
ParsnipXXXXXXXXXXXXXXXXX
Fantastic news about Phoebe. great to here you are getting about again.
Phoebe sounds like a perfectly normal 2 year old, ie exactly like ours. He's adorable but cheeky, not that keen on sharing his toys either.
We took Harrison to see Santa too last week and the visit sounds very similiar, he froze and clung to Nana and me. he did manage to tell Santa his name and that he would like a new garage and some chocolate for Xmas.
Take care for now and we are looking forward to the next blog already.
lots of love hayley, mat oliviai and Harrison xx x x x
Hi
So fabulous to read your latest update. Phoebe is just amazing and I really can't put into words how proud I am of you all. Your strength and courage has been inspirational. To see Phoebe running around and eating and laughing is just ..well words can't describe it.
All my love to you all and I will see you later tonight
xxxx
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