Thursday, June 17, 2010

The Date is Set

They are admitting Bella into the hospital for her stem cell transplant next Tuesday, June 22. They will start her immediately on an anti-seizure drug called keppra, then begin busulfan on Wednesday. One of the possible side effects of busulfan is seizures, so the keppra will be good and flowin' in her system already when the busulfan arrives.

Bella's transplant date is set for July 2nd.

I will go into greater detail as we roll through each day. Now we have a timeline. We can all start to focus our intentions and prayers into time.

We finished a barrage of tests and labs today. Ali was a CHAMP this morning. A steady combination of benedryl, lydocaine, Barbi DVD, and mommy kept Ali as relaxed as we needed her to finally get her labs done.

Bella was a champ through her CT scan, chest x-ray, and Echocardiagram as well! She is just so sweet. She is charming everyone that works with her.

Unfortunately, her Hickman Line is not working properly and has become a little bit of a pain in the ass, pardon my french. It is really difficult to draw blood from it. They can fluch liquids into it just fine, but pulling the good red stuff out... that's another matter. Seems that it is a pretty big line in a pretty small kid, so it is probably resting up against the wall of the vein.

However, the pouch that holds the line is AWESOME! you cannot see any of the line exposed when not in use. That makes my anxiety nice and LOW.

Bandage changes went really well today, except that we can't get the Hickman wet. So, back to sponge baths. Boooo! We brought her super cute inflatable tub and we got all of one use from it before it has been relegated to unfit for use. Waaahh! Love that little tub. Bella greatly prefers bath time these days over lying on her back time. Oh well. Life is change, life is change.

Ali starred in her first musical today! The kids at RMH had a 3 day drama camp that culminated in them putting on excerpts from "Annie." Oh man, it was CUTE! We were proud parents as we watched her first dramatic production! She does it at home almost every day, so why not in front of strangers?

Tomorrow, we (I) move (us) into our new suite! It is basically an apartment. There is a main living room that has a pullout couch and a glider, a dining area/table and small kitchenette. Then, the bed room has a built in desk, two queen sized beds and built in bunk beds with TONS of closet space and storage! I'll get some pics up once we're moved in.

We got our "Parent Handbook" on BMT today. Woof. It's a textbook. We got a lot of reading to do. Luckily, thanks to Marybeth Sheridan and Brett Kopelan, we have followed closely two of the recent BMT patients with Epidermolysis Bullosa over the internet, so we feel like we have a sense of what is to come. When they sat me down and explained the entire procedure today, I felt like most of it was review from reading it on the net. Now it is time to internalize it.

Onward we go! Thanks for being here with us. Please, keep the comments coming. Even just a "Hi, we're here with you." is really all we want to know. The biggest drawback of using a public site like this is that while we can track that over 200 people come to Bella's blog every week, we don't know who 99% of them are. That makes us sad, because it's the personal relationships through a few sentences that keep us going, and when we get 0-5 comments when 200 or more read the post, well, we just miss hearing from you, too! you just hear from me, now we'd like to hear from you! Let's see just how many people we can get to comment on one post. C'mon! Chime in! Hook us up!

Love and Gratitude.


  1. Wishing you all the best and sending you lot's of love and positive energy,
    the "other" Ringgolds, Paul, Heike and Liesel.
    We are here with you.

  2. Hi, I have been reading your blog for about a month now and am in love with your family. I have a seven month old at home and I know that it is a tough job to raise her and it seems like you do such a great job taking care of Bella. I hope that you will continue to be strong and positive through this because I'm sure that that will help Bella too. I am happy and sad that I got the chance to meet your family through this blog. I will continue to read and pray for you. Laura Valetutto

  3. Following your journey and wishing for the best outcome for Bella. After reading Sam's story, my heart is with you and the other EB families especially as you tackle the BMT process.

  4. I've been here for a while - just haven't commented until now. I just want to say thank you for sharing every part of this journey - especially about NY trials as well.

    Good luck with the move and the admitting and everything left to come - my prayers are definately with you guys!

    RDEB - 36

  5. Hi Tim: I am always here with you guys. Thanks for the updates. I have been following Sam and Rafi too so I will love to read how Bella is doing.
    You guys are awesome and our prayers are with you all the time. Kick some EB butt please!!!Love Leah's Nana

  6. I haven't missed a post - always thinking of you and sending positive thoughts to all. Ali was definitely a brave big sister, and Bella's sweet personality comes through so strongly in the pictures - what dear little girls you have. Hope the job transition goes well for you Angelique. And Tim - you do so well keeping things together and then even posting for all of us every day before your head hits the pillow - so much appreciated. Love, Terri Rochford

  7. Thanks for keeping the updates. I wonder if anyone else had difficulty finding how to post comments, or is it just old folks like me. I've been looking for a box marked comments. Today, I clicked on the line that said 6 comments, and that was it!
    Looking forward to being with you all in July. Meanwhile, I'll keep following your updates and praying for you all. You, Ang, Ali and Belle are
    amazing. Love , Mom

  8. P.S.
    Again, for anyone not understanding how to post, I wasn't sure what to check in the box Comment As: I chose "Anonymous" as others have and that worked.
    Ralph and I are sending lots of love with our best wishes and prayers. Mom

  9. I'm a fan of Bella's and your family. I work at Children's Cancer Research Fund, the organization PUCK is connected to. I found your blog when we promoted Bella's Blessings on our website. Bella is in wonderful hands at the U of M. Thank you for sharing your story.

  10. I am a new to your blog. I will follow and PRAY for your family. I have been PRAYING for Sam and Jonah and Tripp some other EB children and came across your story so, it will be a joy to pray for your family too!! :)
    Sarah from Oklahoma

  11. Hello!! I am here almost everyday checking on Bella and a few more of my eb babies. Wishing you all the best and praying for a cure for all the children. I don't blog often but read today how you wanted more than 5 or 6 of the 200 who read to say hello. Good luck with all that is coming and tell Ali she is a brave little girl also. Hugs to all of you.
    Anita from Florida

  12. Im just here to say Im thinking of your whole family and wishing you the best during the next few months!

  13. I've been following your blog for a while and i'm in awe at how good you take care of both of your girls. Sending all positive energy and tons of prayers for you guys!

  14. I am thinking about your whole family! I hope that everything you wish/dream/hope/pray for will come all soooo deserve it!!
    Keep your sense of humor!!
    Thank you for sharing your journey with us!

  15. Hi! I'm Amy and I just started following your blog, I came over from Jonah's website. Maybe I posted the other night when I spent 3 hours reading Bella's story from beginning to end...or maybe I didn't, I can't remember. I live in TX, but am from MN and feel a little bit of home when I read your blog now. Bella is beautiful and you have an amazing family. I don't know anyone personally with EB but I feel like if I met someone with it I'd understand a whole lot more from your blog (as well as Jonah and Tripps who I follow as well). I do have 3 children of my own, including twin girls who were born just before Bella. So my heart goes out to you, being a parent is tough work. And I can't imagine the journey you've been on this last year. I will continue to send prayers your way :)

  16. Still here, praying for and loving you guys. Please let me know if you need anything I can send you or do for you (and I also had a reader that lives only a few minutes away from the RMH that offered to do meals or whatever you need, so give me the word and I'll hook y'all up). Stay strong!

  17. Hi, sg from KS. Following several eb kids and cancer kids. Do lots of praying during my work day. Your family are just added to my pray list.

  18. Reading along daily and thinking of you as you take this huge step forward. So, so many people are sending positive (albeit silent!) wishes. Stay strong and keep loving those sweet girls of yours.

  19. You all look and sound like you are doing GREAT!!!!! Thanks so much for sharing your experience with us!!!!!! Thoughts and prayers are with your entire family daily!!!! I can't wait to read tommorow!!! What an awesome thing you are doing not only for your baby but for every person with EB! Lydia

  20. hi! i'm ashley, mama to 10 month old edie. I've been following your blog for just a few days now but i've done a ton of back reading to catch up :-) your girls are gorgeous and you look like such a happy family! I'm a second year med student and i want to be a pediatrician so i follow special needs blogs a lot and i'm especially interested in EB. I've been following sam, rafi, jonah, tripp, and elly (a little sweedish cutie) for a long time now and i was so glad when patrice posted more info on all of jonah's EB friends recently.
    thanks for sharing your journey and we're all rooting for your family and especially sweet, beautiful Bella!!

  21. kristen and james are sending good thoughts your way! we read your blog and pray for you and your family.

  22. Hi, we are reading and praying all the way from South Florida. We heard about you from Jonah's mom. We are blessed to be on this journey with you, thank you for sharing your story.

  23. Wishing Bella and the whole family all the best.
    Martina (UK)

  24. Hey Guys!
    We glad to see everything is finally done!! The work up is such a HUGE pain, and now it's over! Enjoy your weekend before your miracle begins! See you soon! We're all in it together!

  25. I am sending prayers for bella and your family...I commend you for what you are doing..I will keep following...First time posting...I hear a chime :)

  26. Dear Bella and Family,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Please know that others are thinking of you and pulling for you! To learn more about our programs and services, you may visit or call 800-546-5268.
    P.S. I’d like to offer you a copy of our award-winning "Caregivers’ Guide for BMT: Practical Perspectives" if you send your mailing address to me at