Wednesday, June 23, 2010

June 22,23,2010: Days -10 & -9

First of all, I apologize for not posting last night. It was a late one.

Here is yesterday's summary, followed by today's:

June 22, 2010: Admission time!

Well the day finally arrived. It was a day full of anticipation, both excited and anxious. In the air hung the hope for a better future for not only Bella, but all kids with Epidermolysis Bullosa, and the fear of the path required to get there.

We were to arrive at Admissions at 11:00 am, which remarkably we actually did. Suitcases in tow, we did the paperwork, and headed up to the now famous "5D". Unit 5D in the hospital is reserved for pediatric BMT, and where our previous 11 fellow pioneers found themselves. We have read about 5D since the fall when we started following online posts from patient number 7's mom. Now, it was our turn.

After a relatively short while, we were informed that we had a "pass" and could leave the hospital till 8pm. That was a bit weird. Why show up at 11am, then? Oh well, I thought it was a treat! We went back to RMH, had lunch, and Bella and I took a good nap. Little did I realize how much I'd need it... more on that soon.

We went out to Punch Pizza just up the street, which was highly recommended to me by my friend Logan. Being the pizza-holic that I am, I decided this would be a perfect "last meal" on the outside. So, we set off for Punch. It is a really cool little restaurant that wood-fires your pizza at 800 degrees for roughly 90 seconds. What you end up with is a deliciously fresh pie. The decor in the restaurant is pretty cool; they have giant garage doors that open to the street. Since the weather was quite warm, the doors were open and we were treated to all the traffic noise one could take. However, the doors being open presented one of the best Providence stories to date:

Picture this: we are sitting in a booth about 6 booths in from the street, so we are pretty far into the restaurant. In fact, there is only one other booth behind us before you reach the back of the room. Toward the end of our meal, as I look out the open garage bay, I spy a butterfly. Remember, butterflies are the symbol for EB since the fragility of EB kids' skin has been compared to the delicate nature of a butterfly's wing. Anyhow, I watch this butterfly fly into the restaurant and down the aisle straight toward Bella. Bella is sitting in the aisle in her stroller, facing us. The butterfly flies right up to Bella's stroller, then does a 180 degree turn and flies back to the entrance of the restaurant. Then, it turns around, flies back in again to Bella, turns around, and then flies back to the sidewalk. By this time I am flipping out and manage to get Ang to grab the camera to try to take a picture, because the butterfly then turns around and flies back to Bella A THIRD TIME and lands at the foot of her stroller. It lands so close, Bella practically rolls over it with her wheel. Once Ang takes a picture, the butterfly flies back down the aisle, and this time flies right out the door and on its merry way.

Did the butterfly know that just hours earlier I was hanging a butterfly above Bella's crib in her hospital room to help brighten the room and have him watch over her?

Remember, God is in the whispers. He whispered 3 times the same thing he always whispers, "I got you, I got you, I got you."

I never get tired of hearing it. I'm grateful that I remember to listen.

Bella went down quietly and peacefully at 9pm with her evening bottle. However, we still hadn't changed her Hickman dressing. Up till then this had been quite painful for her. Sure enough, she woke up, and would NOT go back to sleep. It was 1:15 this morning when she finally collapsed. Hence no update. She screamed all the way till then. A rough ending, but a great day.

June 23: Day-9:

For those who don't know, we are part of a 100 day clinical trial. Those 100 days are from the day of transplant, which is called Day 0. Any days in chemo leading up to transplantation are like a count-down. So, tomorrow will be Day -8, the Day -7, etc.

Today, Bella began her chemotherapy. It was so exciting, I slept right through it. Seriously, it was just another tube added to her giant pole of meds and fluids at exactly 4am. No need to get up, so I didn't. She began what will be 4 days of a drug called busulfan. It's a nasty, toxic poison that will kill off a good chunk of her bone marrow. The idea is that the busulfan "moves out" the existing tenant, namely Bella's bone marrow, to make room for a new tenant, Ali's marrow. It's a bit more like a forcible eviction, and the eviction began today. No side effects today, thankfully, but they're coming. Actually, we had to sedate Bella tonight to get her to sleep. She was screaming uncontrollably again and was simply inconsolable. I couldn't even hold her she was writhed around violently in her crib. As I watched her sobbing and yelling, I thought, "So this is what it looks like when you poison your own kid on purpose." No lie folks, this is a dark tunnel to have to go down in order to get to the light, and the process is damn near barbaric, but it's all we got. This is why I hope that this research can somehow spawn new research into less invasive ways to treat and cure EB.

It's gonna be a long walk in this little room. Look at the pictures and you can see Bella already feeling a little trapped in her crib. I thank God that she won't have any conscious memory of this little stroll in Minnesota.

At the start of the day...

By lunch time...

By dinner time...

At the end of the day...

Don't worry. It's not all gloom and doom. I'm just tired. Tomorrow I'll make sure to tell you about all the amazing staff and resources that have been simply pouring in since Monday. Thank you as well for all the prayers, intention, positive thoughts, vibes, wishes, and comments. They make us feel like you are right here with us. We are a long way from home, but we don't feel a long way from you. I take you with me through the day. With each new comment, my phone vibrates and gives me a little inspirational cup of water to keep me running through the day on this marathon. Thanks for all the cups of water. They mean a lot. God bless you.


  1. I love the butterfly story... how touching for your family as your start this long road. Please know there are a lot of people praying for your sweet Anabella!

  2. I've been following Bella's journey for just over a week now. Each morning I check in on the BMT/EB kids to know how to pray specifically for each one.
    Please know you have many who are praying yoou through this journey.
    Thank you for sharing your daughter/family/journey with us so we can go before the throne for you.

  3. I found your story from Jonah's website. I am praying for you as you start on your journey.

    What a beautiful love letter from God in the form of a butterfly!

  4. Love, love, love the butterfly story. How neat was that? Everytime we see a butterfly, we think of Leah.
    So sorry that you have to watch your daughter go through this, but you do what you have to do. To get better, sometimes you have to go through he**. We are praying for your Bella everyday and praying for strength for your family. Please hang in there and know your EB family is out here. God Is Good All The Time. Love Leah's Nana

  5. Hi guys. I'm glad things are underway. I'm sure the waiting has been a tough part. Still praying for sweet Bella and for you guys to continue to have hope, peace, and strength. The butterfly story gave me chills and sometimes you are so glad that God just smacks you in the face with His presence like that. You are not alone. He is with you. We are with you. Prayers and hugs.

  6. That is a beautiful story about the Butterfly.
    On Punch Pizza's grand opening last year they gave out free pizza and accepted and matched all donations for Children's Cancer Research Fund. They are a great group of people.
    I hope Bella's journey goes as smoothly and uneventful as possible.

  7. You are constantly in my thoughts. Bella is an absolutely beautiful child of God and she will be better soon. Gather up buckets full of strength for her and yourselves from all who send it. Hugs, Terri R.

  8. I will be praying for Bella and for the family and the medical staff that will be taking care of her. God is an awesome God and he will see you through this! Keep the faith!

  9. Love to read about all the activities you do as a famiy to normalize life as much as possible. The butterfly's visit is truly awesome.
    Continuing to send love and prayers for strength for you all.Mom

  10. Just wanted you to know your church family is praying for all of you. Hugs, Thomas & Elaine

  11. I've been reading for several several months now, through your journey to visit and determine where to go for this and so on. I am not a huge commenter, but just wanted you to know that I am reading and praying and thinking of your sweet family daily, sometimes more than once. You are on an incredible journey, one that I cannot imagine - your strength is amazing to those of us out here. Sweet Bella is a true gift,and Ali too. God is with you and so are we!!!! Good luck to Bella and all of ya'll!!!!!!

  12. What an amazing gift that butterfly was! Flying back and forth to tell you that you are not on this journey without Him. :)

    It sounds like it'll be a rough ride but one definately worth taking. I wish you all the strength in the world.

  13. I found your blog through Jonah's blog. I have been following Jonah, Sam, Tripp, and little angel Leah and now I will follow sweet Bella and sweet Daylon. I had never heard of EB before a friend of mine linked to Jonah's blog, but I now have a special place in my heart for all these kids. Know that I will be praying for you all as you go through this process. I will pray that God will protect and comfort Bella, and that he will give you and your family strength and courage. Also, thank you for reminding me that God is in the whispers. I wrote that on a post it and stuck it on my computer at work. What a wonderful thing to remember--that God often shows up quietly, sometimes on the wings of a butterfly.

  14. I found your blog from Daylon's blog and your story just touched my heart. I first found out about Daylon in April when his story came out in the local newspaper. My friends and family all attended the Walk-a-thon for him and I have been following his story since then. Just yesterday I found his blog and I found yours today. I just want to let you know that you and your baby will forever be in my mind. I pray that this Trial finds a cure for EB.. I couldn't imagine what you are going through.. Just know that you have a lot of people praying and thinking about you during this exciting but tough time. :)

    P.S. The butterfly story was so cool!

    Alina Hernandez
    Corona, CA

  15. Hi Tim,
    I've been following your blog for a while now, but I don't know if I've ever commented. Don't know why. I came across Bellas blog as I was looking into bone marrow transplants because I want to be a donor (/on the donor list, at least...)

    I've grown quite fond of Bella and visit her blog every day to see how she is. I feel for her during this time, and the whole family. The nerves I feel during this situation can't compare in the slightest to how you guys all feel!!

    I knew about EB before Bella, but I didn't know about this new treatment/cure. I will pray every day that for Bella, it works. Thank you so much for sharing this journey, I really really care to see how it goes for Bella (and for Ali for that matter, she's the best big sister Bella could ask for. Not every child could do what Ali is going to do, you guys are blessed to have Ali willing to do that, but you already know that)

    Good luck!! I'll be here following along with everyone else : )

  16. Sending you a "little cup of water" :)
    Thinking of sweet Bella and good luck to you all

  17. Praying for your journey... Best wishes!!!

  18. God Bless Bella! Love the butterfly story.

  19. It's nice to know you guys are up here (5D)with us even though we can't see you. I'm sorry that Bella has to go through all of this, but I know it will be worth it in the long run! If you ever need to talk, we will be there for you. We'll continue to pray for Bella and your family each day. May you have the strength to get through this. Love, Brian, Jennifer and kids

  20. amazing...will you and Ang get a butterfly tattoo? seriously....awesome story.

    hope your cup is full of water this week...

  21. amazing...will you and Ang get a butterfly tattoo? seriously....awesome story.

    hope your cup is full of water this week...

  22. Thank you for the update, Tim. I'm praying for Bella - I feel like I know her after reading the book and keeping up with your blog!

    Rachel :)

  23. Hi Tim,

    Thanks for sharing. I pray everything goes Bella's way. Sending love and hugs to Ang and the girls!...and you too.


  24. I don't think that Angelique or Tim will get a butterfly tattoo, but Grandma is seriously thinking about it.

    I don't think that Ang or Tim will get a butterfly tatoo, but Grandma is seriously thinking about it.