Rebekah had her stem cell transplant on mon- 13 bags of cells over approx 2 hours.
She has spiked several neutropenic fevers. She has severe mucositis, which is very painful and makes it difficult to eat. Pain and symptom management stopped yesterday for a consult and set up a PCA pump with fentynal for pain. Similar to morphine pump, this pump gives her a continuous drip of pain medication which she is able to increase by pressing a button. She got a decent nights sleep last night. Before transplant, she was walking a mile to a mile and a half a day.
After transplant til yesterday, she could barely stand up because of the severity of the pain. Today, she and her pump hope to resume their walking routine.
Diane and I have been here 24/7 except for the night before transplant when she was feeling good and had one of her favorite nurses. Bek encouraged us to go home and get a good nights sleep to prepare for post transplant.
We have her room decorated with pictures and cards from everyone- as well as with her bed linens from home- with her Aunt Bobbie's quilt and with Nan and Pop's friend Jackie Heinz's afghan- stitched with a hail mary in every stitch. We have taken over the room. Posters from her friend Darrel adorn the walls. Boston Red Sox hats in several colors hang from an iv pole from the ceiling. We will need a u haul truck to go home.
We are certainly not out of the woods yet, but for this moment-right now- she is not in severe pain, Diane is trying to figure out what she can eat- assembling a menu of sorts that will work with mucositis and Bekah is sitting up in bed eating oatmeal. just a short moment of rest- but we will take it.
thanks to everyone for the thoughts and prayers- keep em coming!
darlene
33 comments:
Oh wow. I hope you are feeling better soon. Praying for you.
OH- we just got a gorgeous picture of wullie and his pom poms.
it is now prominently placed in the room
bekah's mom
Praying for you dear.
Love,
Isabelle
Hey 'Moms' (as Darlene and Diane are now globally known!!).
Glad Wullie's card arrived in one piece - no SCTer should be without Wullie and his pom-poms in the room!!
'Moms', this was the hardest time for me during Wullie's SCT - there's nothing to do but wait for the cells to do their bit and ensure that pain meds are keeping the worst of it at bay. Waiting is HARD but be assured that this WILL pass and you'll have your Beautiful B back home in good time......hope you know how much we care for your daughter...here's to her super-cells doing the job quickly and effectively...many hugs to you both and of course a special squishy, gentle one for our SCT superwoman.......Vx
Thanks for the update Darlene. I've been thinking of you often Bek! Keep up the fight. One day at a time... YOU CAN DO IT!!!!
Love you!!!
love you always bek... oxoxoxox
My heart is with you Bek. I'd be willing to bet you are looking forward to the day when you look back on this blur of undesireable memories. I hope it will come sooner than later. Hugs, Love, Smiles & Smooches, Stephanie T.
Hi sweet Bekah and "MOMS"...thanks so much for the update! Hope that the pain meds do their thing and give you some peace and comfort until your new cells kick in and make you feel better.
Please have someone check your mail at home as there should be a package there between today and Sat...hope someone can bring it to the hospital for you...please let me know.
Hope we'll get to see pictures of your "home away from home" decorations!!
As always...thinking of you often and sending big squishy, but gentle, ((HUGS)) to you ALL.
Susan
Your in my thoughts always, love. Hang in there! Moms, you're the best! I will be down the first weekend in May to help out and hopefully give you both a break.
Bekah,
All of us from the WebMagic boards are sending out every positive vibe we can to you. Keep up the good fight...before long this will all be a distant memory and you'll be back in your classroom.
Love to you and your moms...
Kathy
This is it, treatment is over and now it's all about recovery. Jsut remember you will get better with every passing day. Although at times for me it felt like one step forward and two steps back, you are progressing every day.
Bekah you are blessed to have such wonderful, caring and loving moms.
Wishing you all home soon.
Much love from Texas,
Brandy
Hey Bek,
Love you and miss you bunches! Take the recovery day by day, and get back up to Boston so we can go see the Red Sox!! Im thinking of you all the time.
~Lynn~
Thinking of you Bekah :)
Just know that the worse is over, every day now your strength will get stronger and the pain will get smaller. Then you can put this all behind you and get on with living :)
P.S: If someone can post a picture of your room so that we can see how it's decorated, that would be great. Your mom made it sound really cool :)
Love,
Cathy
Thank you Moms for the update!
Suzanne and I are happy to hear things are going along (and that the pain is under control). Here's hoping the rest of the way is smooth sailing.
Steve & Suzanne
Bekah,
It's just a matter of time now and each day that you feel bad will soon enough be replaced with many many when you feel good. It's all been worth it Bekah and this is the toughest part. You and your moms have all these prayers and good thoughts directed your way. Let's hope that during this season when some of us are celebrating freedom from bondage that your SCT proves to be (and it will be) freedom from the bondage of Hodgkins (ok corny, but still)....
Soon enough you'll join us in the successful SCT group!
B
We hope each day will bring you a new promise of hope and good health. You are amazing and have a gorgeous support system with you and online. Keep up the good fight Bekah! Sending you some Colorado love! The Hale Family
Hi Bekah...thinking of you tonight and hope that your cells are multiplying and that you are feeling better each day. Hope someone brought you your package from home. Please let me know you received it.
((HUGS))
Susan
Thinking of you lovely, Bekah.
Wishing you new, robust cells and a strong and healthy immune system.
The phoenix will rise. . . . ;)
i am reedng and cheering yuo on quietly, Bekah, trutth. :) yuo ar creatng scch a rippl efect, yuo js wil nevr no all tth lives yuo hav tuchd. gratitude, yes, frm me to yuo.
may tths treetmnt be kik-ass sucessfl! HEERS TO HOPE!!!!
hey kiddo
it is rough
but you can do this
because
you are a badass warrior
with a heart of gold
hey moms
i know you are weary
and the coffee
is really gettin old
but
please update
and tell me how my favorite sister
is doin
prayers from missouri
from a pig farmer
j
Stay strong, Bekah!
I hope you're starting to feel better.
T.O.G.
Dear Bekah,
Thinking of you. Hoping you're feeling better and better by the hour.
Thank you Darlene for updating us all, you are both amazing moms!
Love,
Sivan.
hi all,
bekah is fighting 2 infections- a urinary tract- and a gi tract.
she is feeling pretty lousy- but is hanging in there- as are we.
thanks for all your posts- she is reading them- just not in a place to respond.
darlene
Thanks for the update Darlene -
Sorry you are feeling pretty lousy Bekah...but this too shall pass. Hope the meds are making it all a blurr.
Thinking of you often...hoping that someone brought you your package from home...hate to think of it sitting on the doorstep!
Sending super big squishy ((HUGS)) filled with love, healing thoughts, and hopes that this will be over with soon and you'll be back to your happy go lucky self :)
Susan
Bekah,
I found your site thru your dad. My thoughts & prayers are with you. Thank You for being sooooooo up-lifting! Maryann
Was hoping that no news was good news, but as for the infections just keep staying strong and this too shall pass. Keep a positive attitude and know that we're all thinking good thoughts for you Bekah!
B
infections seem to be responding to antibiotics- numbers coming up- bek is still feeling lousy- but docs are encouraged
bek's mom darlene
Thanks for the update, Darlene! I'm thinking about you lots, Bekah!
It'll get better, Hon, I promise.
Lots of love and hugs!!!!
Robin
Woo Hoo! Congratulations on your new baby cells kicking in and doing their job!!
It's onwards and upwards from here - Wullie was plagued by infections too and we reached the stage where we thought that he would never feel well again - but hey, he did and just look at him now!!
Take care, all of you........and Darlene, thank-you so much for updating us......you'll have your girl home soon..........xx
Get better, Bekah! We are rooting for you!
Marsha
Dear Bekah,
I'm sorry to hear you're not feeling well. I remember the mucositis well and I hope they're giving you some good drugs for it. We're all pulling for you here on the HL board! Feel better soon, Janet (Quetzal1)
Hang in there, Bekah. Things will improve very, very soon. We all love you and are thinking about you.
BIG BIG HUGS, Alison
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