Thursday, July 1, 2010

July 1: Day -1


Well, here we are, on the eve of another big day. Tomorrow, Bella gets her transplant. To be more accurate, she gets her transfusion. There is no "surgery" involved for Bella like there would be for an organ transplant. Since marrow can go straight in through an IV, they'll just hang a bag of Ali's marrow on Bella's IV pole and that'll be that.

Then, the waiting and counting begins.

In the meantime, Ali's work is a little more in depth. First, they need to draw some more blood in the morning. (The clinic was unsuccessful today for a second time in making Ali feel comfortable enough to overcame the fear of getting a needle stuck in your arm. I'm not going to get into the blow by blow, but suffice to say there is someone in that office that perhaps is not in her ideal job.)

Moving right along, Ali will then go into the O.R. and "go under" for her procedure. They will harvest marrow out of two spots in her hips. She'll then be admitted and hopefully end up in one of the two currently-empty rooms across the hall from Bella. Then, by dinner time, she should be ready to go back to RMH and spend the night there. Then, she'll lay low over the weekend and watch movies.


For Bella, the game is to just survive. She has mucositis already (kids with epidermolysis bullosa get it earlier than others), and it is making breathing really difficult. The good news is that her lungs sound clear, so it's just in her throat and mouth. Having said that, I can't describe how rough it already is. It's not phlegm in her throat; it's more like the thickest saliva you could imagine. It's clear, but it just keeps coming and coming, and Bella chokes and gags on it. In addition, she is in so much general discomfort from the effects of the chemotherapy, that she has no energy to even sit up. She is turning orange and pink, and the chemo just smells awful. She doesn't make eye contact and for the best part of the day, sleeps in a passed out sort of stupor. For the worst part of the day, she wrestles and screams while I try to suction the saliva out of her mouth while she gags on it. I can't imagine the damage I'm doing to her lips, but it's less than if she aspirates this think mucus. Baby Daylon already stopped breathing on his own earlier this week, and now thankfully rests on a ventilator. At one point today, I began to think that didn't sound too bad, compared to the incessant gurgling coming from Bella's throat.


Throw on top of all this that one of our fellow RMH families lost their little boy to cancer today who was up on this unit for a long time, and I have to admit I'm scared up here. All I can do is try to care for Bella the best I can, and let God handle the rest. I want to thank all of you for your continued prayers. I have little ability to pray right now, and I don't feel guilty, because I know you have that covered. Ang and I'll take care of the hands on stuff in the room, and you take care of the prayer. Together, we'll carry our sweet little Bella through this. Sound like a plan?

It's hard to imagine sitting where I am sitting right now, but one day, Bella will say, "yeah, when I was born, I had this rare skin condition, but when They brought me home from the hospital, it went away." If I can just pretend that while it's summer outside, it's a Minnesota winter in here, I can be reminded by just looking out the window at the endless lush green trees that the seasons change, and so too shall this. It is so beautiful here. It is impossible to imagine that this is the same place we visited in January. I will be dancing with Bella at her first dance of her wedding thinking this was the same girl who I had to suction to keep breathing the night before her big sister saved her life back in 2010. That makes for a pretty inspiring story line. A story I can get recharged to continuing to co-write.

Thanks for helping us write this tale.

God bless you.

26 comments:

  1. (Big sigh). This was the hardest one for me. Tears are rolling as I type. I've enlisted everyone I know to wrap Bella and Ali (and you and Ang in prayer).

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  2. Tim and Ang

    Remember It's always darkest before the dawn. We are sending you all the love and positive energy we can from down here in San Diego. We look forward to Bella's successful transfusion as she takes her first steps on this new path of healing!

    Stay Strong

    Pete, Maria, A.J. & Steven McGovern

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  3. You are an inspiration to all. From Mission, Texas we are extending our prayers to all of you and will pray incessantly tomorrow for all to go well. Keep posting!

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  4. your writing today made me sad...

    Keep fighting, you are not alone!

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  5. Jack and Molly's NanaJuly 1, 2010 at 11:05 PM

    These pictures tell the story. I love the one of Ali reaching out to Bella as if to say, "It's gonna be fine, little sister. I'm here." Bless all those whose know-how will guide them tomorrow, for their dedication, as well as yours for getting your little beauty to this point. Thank you for keeping all of us up-to-date, and may God grant you strength to keep up your incredible pace.

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  6. You are all an inspiration and I am sending you big prayers from back here in Redding from the whole walker family.

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  7. You can definitely count on us to pray for your sweet princess. Breaks my heart so see her sad face.

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  8. Oh this journey is so difficult but I am so thankful that God will carry your through. I'm praying in Michigan for Bella, for Ali, and for the two of you. I'm praying God will send angels on earth to help meet each one of your needs and the Holy Spirit to hold the two of you to comfort through this road you travel. I'm also praying for the medical community as they care for both your little ones that there would be wisdom as they use the knowledge given them.

    Kim M
    Waterford, Michigan

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  9. We are praying.
    Ange
    Atlanta, GA

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  10. Praying so so hard for your little Bella. It was sad to read this update but I know you guys will be doing so much better before you know it. Please take care. God Bless!!! Love Leah's Nana

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  11. Praying so hard! It's definitely "a deal"- we will pray, you take care of those babies!!! May God continue to bless your family and wrap you in His love...

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  12. I believe in Angels, and God has given you, Angelique, Ali, and Bella, Angels - one to stay with each of you always so you will not be alone. He sends others in the form of those who care, pray, can find exactly the right thing to say to lift your spirits and give hope, those who provide medical attention and a myriad of other things, to walk beside you on this journey. Many many hugs to all. God bless you all. Terri Rochford

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  13. I can't image the path your family is walking right now. I can't image the difficulty of it. I will continue my prayers for Bella and now for Ali too - and for both of you!

    When I was growing up, my mom would always stand on the opposite side of the room from the tech drawing the blood. I would look at my mom and not the tech. My mom would make faces at me and make me laugh - I wouldn't even feel the stick. Even now - I don't look at the tech drawing blood or the nurse doing the IV. I hope that helps!

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  14. Prayers abound for Bella, brave big sister Ali, and you and Ang. Your courage and faith are inspiring through all of this, may God continue to hold you in the palm of his hand.

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  15. My heart just breaks to hear how difficult this is for little Bella, and all of you. As I write this though, I am filled with a peace that I am sending to you all...I hope you can feel it too. Every cell in my being is praying for Bella...beautiful baby girl...be well.

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  16. I can pray. I do not believe that I could do what you are doing for m Bella if she were my child. So I will continue to pray. sg from Kansas

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  17. Turn your eyes to the Lord today. He will help you. Soak in your blessing from above, she is with you. Give her over to the Greatest Physician and He will heal her. I will be praying...TB from GA

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  18. Praying, Praying and more Praying, that is my focus today. Rounding up all prayer warriors and will be sending you our strength and love. I am only looking at the positives and the "big picture." Like you said, Bella will be looking back on all this with her big beautiful smile.

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  19. Holding you close in prayer. Infact, I'm wrapping you in it...don't worry...we got the prayer part covered!
    Kathryn
    KC, MO

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  20. I am praying that God gives you peace and the assurance that He is in control as you all so bravely struggle through this extremely difficult time with darling Bella.You don't know me, but I have fallen in love with your whole family and am praying for you with all of my heart! May you find strength and be lifted up by the love and prayers of all of us prayer warriers!!

    Karen
    Clovis, CA

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  21. I pray for your beautiful little girl as I sit here feeding my daughter Ellewho is scheduled for BMT at UM for August. She has JHEB like Daylon. I was reading through the posts and keep seeing that mucositis has been such a big issue. My daughter has this problem as well, but we found a way to control it somewhat for Elle. I do not mean to offer advice to professionals. I just want to share with you and all others what has worked for us (somewhat). We give our daughter something called Atropine (one drop and she is good for about 4 hours. In the first five minutes it dries her mucus up and as she starts to bring it up. I blow in her face and she sticks her tongue out. Some sort of reflex I guess. I am also ready with a soft napkin at her lips and as soon as it touches the napkin (because of the thickness) it sticks to napkin. I keep twirling napkin and brings it up, sometimes I repeat blowing in her face and then she is cleared. I hope this helps someone it works wonders for Elle. Please check with doctors and professionals to make sure this ok. If anyone wants more info on this please ask DR Wagner for our # in Sacramento and you may call us. Please do not hesitate. I hope this was not to awkward. I just hate seeing this happen to others. It is hard enough. Prayers are with all these beautiful, strong and angelic children. As the saying says. GROW CELLS GROW

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  22. Love and prayers are with all of you.
    BIG hugs,
    The Setto Family

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  23. Ok,so I cryed through this entire post,you are such a beautiful writer! Ali's loves her baby Sis so much you can see it in the pictures and Bella is fighting so hard, what an inspiration to watch your family on this amazing journey! I have to thank you from the bottom of my heart for all you are doing for the EB community, alot of people's futures will be changed due to Bella and her precious family! May God Bless you and be with you ecspecially through these next couple days! We are praying for you Bella as hard as we can!!!!!!!!!!!!!!!! Lydia and Many more in Oregon and Washington

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  24. We have a lot of people here in RSM praying for all of you, and we arn't planning on stopping.
    Russ, Jen, Cody, Casey, & Celeste

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  25. I am a NICU nurse and a mother of two girls. A physician colleague forwaded your blog to our entire nursing staff to read. My nursing practice will forever be changed after reading your blog.
    I pray for you, your family and for your beautiful baby. God bless.

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