Wednesday, June 30, 2010

June 30: Day -2



Yay! Last day of cytoxan! Couldn't come soon enough. Last night, at 1 am, Bella started chirping a little louder than usual, so I got up to check up on her. Turns out her constipation was fixed. Without recounting the graphic details of the next 12 hours, let's just say that her body has officially been ravaged from the inside out by this drug. I saw things coming out of every orifice she has that just didn't look... natural. Her skin looks sunburned, and she spent all morning gagging on esophageal tissue that was sloughing off in her throat from the repeated vomiting of the past 3 days. Her fever came and went and came back again, she can't pee on her own, and the chemo has turned her stool to pure liquid. It's not pretty folks. We got up at 1am this morning and didn't get back to sleep till 4pm this afternoon. We snuck (both Bella and I) in a late afternoon nap, and as soon as I finish typing I'm diving back into bed, something I should have done over an hour ago.


She is currently sleeping on her hands and knees, face down in the sheet, randomly moaning. This sucks. The bright part? She had about 2 hours this afternoon before her nap where her fever broke, and she sat up and played in bed. that was a nice reprieve in an otherwise crummy and scary long day.


Tomorrow, Ali gets one more blood draw before Friday's bone marrow harvest and transfusion. Bella gets a day off before transplantation occurs Friday afternoon. Meanwhile, the chemo's darkest side effects are still about 10 days away.


There has GOT to be a better way.

All we can hope is that we are on a continuum of discovery that leads to a better way for EB kids in the future. If so, then our suffering is not in vain.

Thanks everyone for posting where you are following Bella from. That was really neat! We are moved and touched that you have brought her into your life. Thank you. Keep the prayers coming. She needs them.

Good night.

33 comments:

  1. Prayer from Winter Garden, FL:-)

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  2. I've been following your story for months now. Praying for y'all in Charleston, SC!

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  3. Bella, Ali and you (her parents) are in my thoughts and prayers. Your courage and strength is an inspiration. I can feel all the love that surrounds Bella.

    From Chino Hills, CA (friend of Sara's from your church)

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  4. I agree that there has got to be a better way! The suffering of little children is one of the things that I understand least in life. Praying for your precious little girl here in South Africa.
    PS. Do you know how Daylon is doing? His blog has not been updated for 2 days and he weighs heavily on my heart.

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  5. In a few weeks from now, when Bella's new count comes in hopefully this will seem like a blur. My hatred for Cytoxin is up there with yours. It breaks my heart to look at Bella's picture. Looking into her eyes I can see the pain I saw in Daylon's. I'm trying not to cry since I've got a nurse 3 feet from me, but please know, you're not alone. Brian and I pray your family and Bella everyday. We love you guys, Jenn (Minneapolis,MN...just a few hundred feet away :) )

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  6. Oh! PS- Out of no where Keira told me today,"You know who I think is just adorable? Bella. She's just so cute!". It melted my heart and I thought it would your's too!

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  7. Sending prayer your way from Milton, PA!

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  8. Continuing to pray for your sweet Anabella... may this be the answer to all our prayers. Hugs.

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  9. I'm following Bella's progress through this BMT and am praying for her and you guys. As horrible as EB is for these kids, the BMT process seems to add more misery and pain, but I pray this will be an answer for EB families.

    Praying from Waterford, Michigan
    Kim M

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  10. That first picture of Bella says it all. This really stinks and I hope I feel better real soon.
    Extra prayers and good thoughts coming your way. Hoping all goes well in the next few days. You guys are awesome and I really don't know how you do it. Take care and give Bella a gentle hug and kiss for me. Love Leah's Nana

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  11. I will be praying and thinking of all of you tomorrow. I hope Bella's BMT goes off without a hitch. I follow 10 eb children and I understand how hard life can be for all of you. With lots of hugs - Good luck tomorrow.

    Anita Lee
    Jacksonville, Florida

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  12. Keeping sweet Bella in my prayers! Is there an address where I can send a card to sweet Bella?

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  13. Praying for Bella from San Antonio, Texas.

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  14. Thank you so much for allowing us all to be a part of your journey! I pray for Bella everyday, and am amazed at how strong you all are. Thinking and praying for you all! Good Luck with everything,

    Raleigh, NC

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  15. Praying for your family in High Ridge, Missouri
    You are right...there has GOT to be a better way...and I hope that through all of this, many answers are found!!

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  16. Still praying in St Augustine, FL.

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  17. Bella and her family are heros for everyone with EB! Love and hugs and praying from many people in Oregon!!!!!!!! Lydia

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  18. Prayers coming at you from Indiana AND Kentucky. May God be with you all on this journey.

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  19. Thanks Tim for keeping us informed. I think of you all often. I know we would just quickly see each other in passing, picking the kids up from daycare. But I hope you know what an impact your family has had on me. Your family is so strong and couragous, definitely an inspiration for us all. I miss seeing ALi and Bella's sweet faces. The kids are asking for them at daycare as well. Little Mia was asking Joanie if Ali would be back soon. I read your post daily and fequently stop during the day to pray for Bella, Daylon and both of your families. I know that God is with you all and Bella's is in His hands. God is good, all the time, God is good! Amen. I hope today will be uneventful and you all can rest. Sending my prayers and love~

    Lara Seto-Davidson (Braeden's mom)

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  20. All i can say today is bless her. I can't imagine seeing that pain in person. Ya'll are alot stronger than you think you are! Praying!

    Barbie
    Philadelphia, MS

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  21. Praying for Bella here in St. Peter, MN about an hour south of where you are!

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  22. lots of prayers from Flower Mound, TX

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  23. Hi Tim, Keeping Bella and your family in my thoughts and prayers!
    -Christa (Pasadena, CA)

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  24. Prayers for you and your family. I am following your story closely- my FIL is having a BMT today, as I write this, to try to beat his leukemia (CML). Like I said on Daylon's comments, I am grateful to modern medicine for BMT and the chance to cure diseases like EB and leukemia.

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  25. Praying for your sweet girl and your family, from Ohio. Jonah sent me :)

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  26. Oh, it just breaks my heart to hear what she is going through. Continuing to lift her up in prayer.
    Kari
    Minneapolis

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  27. Still praying from Grande Prairie, Alberta, Canada. Heard you tell your story to a person in line at Disneyland in February, couldn't get it out of my head so glad to have found your family. I cry a little each time I read your blog & I agree there HAS to be a better way. Little Bella is going to make things better for those who follow her. I know it.

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  28. Sorry to hear Bella's having such a hard time. Thinking of you all. Good luck to little Bella and all of you.

    Love from Richard, Kelli, Sofia and Raoul in Huntington Beach, CA

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  29. Praying for your whole family. I hope the transplant goes smoothly and those cells get to work on making Bella better. Thank you so much for keeping everyone updated. Love and prayers from Los Angeles, CA.

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  30. Sending big prayers from Jefferson (the mountains), North Carolina!

    I learned about Bella from Patrice :)

    Helen/'Lucy'

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  31. I know too there has to be a better way...hoping and praying this is the path that leads drs to what we all want...babies like Bella to be cured.

    Still praying- Denise

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  32. Prayers going straight up! Hang in there Vicki

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  33. Many, many prayers Ringgold Family - many, many prayers.
    -The Setto Family

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