Dear Friends,
Hope all is well.
Welcome to the first installment of the Journey throughout Phoebe's Bone Marrow Transplant.
Its the first time I have written a blog so bear with me. I will be updating this each night as Phoebe settles to sleep and updating you all on her progress.
As most of you are aware, Phoebe has been monitored very closely since she was born by Simon Parke and and the team at Cheetham's in Stoke and Rob Wynn at Manchester Childrens Hospital, Pendlebury. After some considerable time testing Phoebe's bloods and comparing them with Eleanor's, we have conclusive findings that Phoebe will develop HLH and therefore needs a Bone Marrow Transplant.
It was back in early November that we received this devastating news but feel blessed that we are in a position to help Phoebe. Phoebe was admitted on Thursday last week for harvesting of her own bone marrow and to have a hickman line fitted. She will have bloods taken from this line and will also receive the chemotherapy and immuno-supressant therapy in preparation for her transplant. We were discharged on Friday evening to enjoy the weekend at home, it felt like a real treat and certainly helped us to appreciate home comforts!!
We really enjoyed the weekend, spending time finishing off a little Christmas shopping, fav curry on Saturday night and catching up with family and friends - especially enjoyed Mum and Dad's sunday lunch too!! We have received some lovely cards, gifts and well wishes, so thank you all so very much for your love and kindness.
We have been admitted to the BMT Unit today ready for Phoebe to start her Chemotherapy tomorrow. The nurses here are lovely as are all the staff that have been looking after Phoebe and Us too!! Phoebe has settled in quite nicely and we have made the room to look as homely as possible. Temp and BP are good so far. We have been told today that Phoebe can leave the room right up until her Transplant day so long as she does not get any infections where it will make her neutropenic (I will check on the spelling for that!!!) - blood count low. The first day of Chemo is supposed to be probably the worst day and we have been briefed as to what we can expect but to remember that every child is different etc. We pray that Phoebe will be as comfortable as we can make her through this initial stage of her treatment.
So far we have the following scheduled:
Dec 1 - Admitted to RMCH
Dec 2 - Day 1 of Conditioning Treatment
Dec 3 - Day 2 of Conditioning Treatment
Dec 4 - Day 3 of Conditioning Treatment
Dec 5 - Day 4 of Conditioning Treatment
Dec 6 - Day 5 of Conditioning Treatment
Dec 7 - Day 6 of Conditioning Treatment
Dec 8 - Day 7 of Conditioning Treatment
Dec 9 - Day 8 of Conditioning Treatment
Dec 10 - Day of Rest
Dec 11 - Transplant Day.
Well its now 11.45pm and I'm feeling completely shattered, so I'll say goodnight and look forward to a few of you joining me on this blog.
Thanks for all the positive thoughts and prayers, keep 'em coming....
For now.....
Lynn, Ade, Phoebe and Spirit Eleanor xxxxx
15 comments:
Just a quick note to say that your all in our thoughts(again),and if there's anything at all that you need you know where we are!!
Give Phoebe a BIG love from the three of us, and let Phoebe know that Charlotte can't wait for her to come home so they can have a good play together.
Hope to see you soon,
Love Sarah,Grant and Charlotte xxxx
Morning Sis :o)
Wow, that's a comprehensive 1st posting!
Looks like this 'blogging' must be quite easy to set up. I might have to do one myself to start sharing with the world my thoughts on X-Factor!
Will give you a call later this evening to see if we can webcam up.
Give Phoebe a big cuddle from me.
Uncle Gary x
hey... thinking of you all, all the time. Molly sends big hugs and sloppy kisses and mark and i send lots of love and positive thoughts. Just yell if there is anything you need or want no matter how small.
much love, see you really soon
becky, mark and molly
xxxx
((((((((Hugs)))))))))) to you all. This is beyond crappy but stay strong. My mantra: "Pain in life is unavoidable; suffering is optional".
Manju just sent me this link, great way to keep everyone updated. You're awesome Lynn! There's going to be a lot of love and support on here, what a great refuge when things are hard. We'll be thinking of you and sending positive energy your way from over here on the other side of the Atlantic.
Tons of love
Denise, Andy, Patrick and Helena XXXXXXXXXXX
As always you are within our thoughts. ANYTHING you guys need just ask.
Ashley sends big kisses to Phoebe and we send lots of support and love.
Stay strong,
Love Sam, Eliot, Ashley & 'Bump'
So much love to you all. We are all thinking about you and hope that all goes well. Thank you so much for keeping us all up to date -we shall keep sending you our love, energy and hugs.
Keep smiling and hope to see you all soon and have our girls playing together again.
Lots of Love,
Sheena, Richard, Isobel and large bumpxx
Hello hello!
This is a fabulous way of keeping in touch!
You are very much in my thoughts at the moment and i really am looking forward to seeing you soon.
Just as an aside and to make you smile - picture me, slowly slipping across the ice rink they call a pavement outside stoke station this evening and faling flat on my face! Yes, the Birmingham commuters thought it was hilarious too!!!! (as do i really!).
Love to you all and a big hug to Phoebe-Margi
Est
xx
Hi,
Bad things always happen to very good people. We'll be thinking of you all and reading your blog to see how you all go on.
Love the photo of Phoebe on the front page.
Good luck and all our love from Lee, Andrea, Brenda and Ernie.
Thanks for doing this blog, helps those of us so far away to keep track. We're thinking of you all (or y'all as they say here!) and sending all our love and positive thoughts and energy.
Love and hugs
Kay & Phil xxxx
Hello hunny, just wanted to say I really hope everything goes as smoothly as it possibly can for your beautiful little girl. Stay strong. Lots of love from Em and Tim xxxxxxxxxxxxxxxxxxx
This is a brilliant way of keeping everybody informed of progress. Thanks for setting this up!
Just to say we are thinking about you and hope all goes well for Phoebe. It is really good to read your commentary of your day! keep posting!
Lots of love from Lesley & Melvyn
Hi to you all, this is a great way to keep everyone informed on how things are going. We are all thinking of you and praying that everything will go to plan.
Love Aunty Maureen, Uncle John, Karen, Dave, Aimee, Matthew & Jack. xxxx
Loving the 'pose' Phoebe!
Glad to here the treatment is going to plan so far.
Look forward to catching up soon.
Love to you all,
Est
xxxx
Hi Lynn, Adrian and of course beautiful Phoebe.
I got an email from your Mom today and I went to your blog right away and will be following daily. My thoughts and prayers on with you all on this journey and I know my Mom is watching over Phoebe.
Your strenth is amazing and also very inspiring. It doesn't seem like we are so far from each other because of the way we can communicate so easily. Love to all of you.
Lissa and also love from Kevin, Chuck and Shawn
Lynn & Ade This is a brilliant way of keeping us all informed of progress.
Just a line to say we are thinking about you and praying for you. Hope it all goes well for Phoebe. It is really good to read your comments each day- you have such a positive attitude.
Rachel rang to ask how it was going so forwarded the 'blog' to her - she sends her love. Love Marie, Steve & all the Perrys xx
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