Sunday, July 18, 2010

July 18: Day +16


Today was Ang's birthday, and the first present of the day was the fact that everyone slept in till...

wait for it...

wait for it...


That is what is possible when you have the metal "black out" blinds we have that COMPLETELY shut out any light from your room when you close them.

Sleeping in till 10:30 is AWESOME!!!!!!!!!!!

We then went downstairs for brunch and filled up on more midwest comfort food. I called my trusty day nurse Rich this morning for the morning numbers; that way I could avoid having to schlep over to the hospital at 8 for rounds. We had good news and bad news again... seems like that's how it goes every day!

The good news:

WBC: 9,800
ANC: 7,200
Bilirubin: holding steady at 1.2
Platelets: 32 (compared to 8 yesterday, this is good)
Hemoglobin: 10.4
BUN: 56

The bad news:

Creatinine: 1.38
CSA: 198

Why are the first set good and the second set bad?

WBC and ANC continue to climb nicely, so it looks like Ali's cells have definitely engrafted to Bella! YAY!

Bilirubin holding steady indicates that we may be moving past what looked like V.O.D.! YAY!

Platelets at 4 times what they were the day before means that Bella won't be oozing blood that is too thin from every open wound in her mouth and throat. YAY!

BUN measures how much waste is in the blood, so this lower number (82 Fri, 63 Sat) means dialysis is at least keeping Bella's blood clean until her kidneys come back to life. Yay!

What's bad about the second set?

The Creatinine number really measures the level of kidney performance, but in reverse. In other words, there is an inverse relationship between kidney function and creatinine levels. Creatinine is a waste product made by your muscles during metabolism. It gets filtered by the kidneys and sent off in your urine. However, if your kidneys aren't working, they aren't pulling out that specific waste product, and it builds up in the blood i.e. its level rises. So, the higher the creatinine level, the worse your kidneys are performing.

The target for creatinine during this process is around .58, or double Bella's admission baseline, which was .29. So, to watch it continue to rise to now 1.38 indicates further insufficiency of renal function.

CSA is the immunosuppressant that, while highly toxic, is important for avoiding Graft Versus Host Disease, or GVHD. The target number for CSA is between 200-400. Depending on which doc you talk to, you'll get a number somewhere within that range as a target. Everyone agreed that 500 was too high for any kid, and for a few days we were hovering right at 250, Dr. Tolar's preferred target level. However, we dropped to 214 yesterday and further to 198 today, so now we are too low. We need that number higher to protect against GVHD since it looks like we have engraftment.

Can you see what a goose chase this whole process is? It is a matter of tinkering with just about everything one could think to tinker with.

Anyway, on top of all this, another spot in Bella's lungs appears to either have collapsed or has fluid or an infection in it, so they had to up her ventilator again today and put her on antibiotics just in case.

Oh, and finally, to top it off, she was a net +800 mL in fluid intake yesterday. So that is just shy of 3 liters of fluid that have filled up inside of her over the past 4 days. Ugh. On a non EB kid, this makes for some difficult breathing, but on an EB kid, this is flirting with disaster with the skin. Every dressing change, I cringe for fear that this is the day her skin gives out, especially her back. Tomorrow is another dressing change day.

In other news, tomorrow Bella will get another Hickman line placed in her so that we can have one line dedicated for her umpteen meds, and a second line just for continual dialysis. This is a good thing for many reasons. The first is that right now, they are pulling a lot of fluid during a relatively short period of time with the intermittent (once a day for 5 hours) dialysis. When on continuous dialysis, they can pull the fluid much more gently over a longer period of time, and this is much easier on Bella's heart and blood pressure. Second, right now, two of her meds have to be squeezed into the dialysis machine, and they are gumming up the lines. By having a dedicated line, it will run smoother for everyone. This does present a new possible infection site, but the pros outweigh the cons in this case.

Also, tomorrow is a reception for all the EB families by P.U.C.K. (Pioneering Unique Cures for Kids) You may recall they were the first partner organization we donated money to from the sales of Bella's Blessings: a Humble Story of Providence. There will be an EB Clinic tomorrow at U of M where the famous dermatologist Dr. John McGrath from London will be in attendance. Dr. Wagner is working with Dr. McGrath to set up a London site for EB BMT, so he's coming here to meet the families and patients from Dr. Wagner's study. A few of the first 11 patients have come in to town to be present.

SO, tomorrow, we have another 5 hour dialysis, surgery, wound care, a visit from Dr. McGrath (he is visiting the PICU to see Bella and Daylon), and this EB reception/dinner in the evening. Anyone else have a busy Monday scheduled? :P

I digress; let me get to the rest of Ang's birthday! Ang and I went and hung out with Bella for a while, then we all set out on an adventure to drive around a few lakes we've heard about in Minneapolis, and last but not least, find a Trader Joe's! Turns out, there is a Whole Foods and Trader Joe's right near these lakes (Lake Calhoun, Lake of the Isles, and Lake Harriet) so we all piled in the minivan and went on our way!

In MN, because there are only a few months a year that aren't encased in snow and ice, they need to do a year's worth of road construction in 6 months or less. So, in their wisdom, the transit people have shut down two of the major freeways in and around the twin cities on the weekends. Solid.

What should have been a 20 minute ride was more like an hour, but once we got there, WOW. Beautiful old neighborhoods with mature trees, windy, shaded streets, and gorgeous views of three different lakes left my mouth hanging open more than once. We found an old trolley service that ran through the woods and rode it for $2 a person! The trolley was out of the 1920's and '30's and was a work of art. Ali was SO HAPPY to ride it!

Then, we stumbled quite accidentally upon the Lake Harriet Concert Band Shell and park. There was an orchestra, choir, and ensemble of singers performing something I did not recognize, but certainly still enjoyed. It was a beautiful place that felt 10,000 miles from the hospital.

We then wandered through the neighborhood of Linden Hill into St. Louis Park to dinner at McCoy's at shops at Excelsior and Grand. After, a nice dinner outside in perfect weather, we headed home and thoroughly enjoyed a piece of the chocolate cake nanny and Ali made for mommy yesterday!

One more drop in to hang out with Bella rounded out the day, and everyone but me then crashed hard in bed while I began telling tales with my fingers on my mac. Here we are... caught up at last.

Sometimes I am reluctant to post; I just wanna go to bed, but in the past 30 days, we've had 24,974 hits on this blog by 5,833 people from over 40 countries. That simply blows my little mind away. All eyes are on Bella and this trial, and I realize how much I hung on every post from MaryBeth and Brett on their blogs when their kids went through this trial, so it's time to pay it forward. Plus, each morning, I stop in that little park on the way to the hospital and read all your prayers and comments of support. It gives me a boost in confidence and comfort as I walk in to yet another 10-Round fight for Bella. These days have taken so much out of me, but you have placed so much back in. We're coming up to a month in the hospital now, and it feels like so much longer than that. Actually, I don't know what it feels like in regards to time. Time has very little meaning right now. That's why I'm stressed about tomorrow's event. It is hard to still try to fit time into this experience. It is an unnecessary stressor, but necessary to some extent. Having said all this, I need to stop writing, and get to bed so that I get enough sleep for the big day tomorrow.

My words of gratitude do not convey my deepest thanks for your presence in our life right now. I wish there was a "thank you very much times ten" word in our language that was reserved for only the most sacred and special moments. If we had such a word, I would be using it, giving it, offering it to you for being here. In lieu of such a word, please accept a humble and simple "Thank you."

Good night and God bless you.


  1. We accept your thank you...
    if you accept...
    "it's our pleasure"


  2. Well, from the sound of your post things are definitely looking up. Good job Bella! What a fighter. I am keeping her in my prayers.

    And, it sounds like you guts all had a WONDERFUL day for Ang's birthday. I'm sure it was great and definitely a well deserved day off.

    Thank you for the very informative update as well. I love reading !bout Bella and Daylon but sometimes its hard to understand what is going on and you do such a wonderful job of explaining.

    God Bless all of you.


    Amber McLaughlin, CA

  3. Since last Saturday, after reading Bella's and Daylon's blog, I just have this feeling that everything will be fine! I can´t really explain why. It is just comfort and confidence that filled up my heart. I just wish I could pass you this feeling.

    I really believe Bella and Daylon are in there way up to recover. This way may take days, weeks or months to complete it, but there is no return! It's up all the way.

    And by the way, what a fantastic day you all had on Ang's birthday. You all deserve it!
    Ang: I believe that this year will be one of the most difficult of your life but also the most rewarding.

    Keeping you all in my most sincere prayers.

    Carla and Matilde, from Portugal

    PS: Ali is so beautiful in that picture! She is truly happy!

  4. We should be thanking you. I just love how you update everyday for us. I know how exhausted you must be by the end of the day, but you still sit down and let us know how your precious daughter is doing. We are so grateful for what you do.
    So glad that Ang had a wonderful birthday, boy does she deserve it or what.
    Prayers are always coming your way. God Is Good All The Time, All The Time God Is Good. Peace and hugs to you all. Love you guys. Love Leah's Nana

  5. I agree that we should be the ones to thank you for allowing us to come along with your family on this difficult, but very rewarding, trip.

    I like how you explained the "goose chase" that this process truly is with the daily tinkering. My Mother had a transplant in April and it took about two months before the tinkering finally stopped and the doctors found the sweet spot. She had kidney issues as well and is now being closely watched by a specialist. I know how hard it is to hear the good/bad news, but want you to know that we are praying for your sweet Bella.

  6. I also agree we should be thanking you for taking the time to allow us into your very special world! Many prayers still going out for all of you, and so happy you were able to have a nice birthday celebration yesterday!

  7. Isn't Minnesota beautiful! Your description makes me miss my short stay there. I still wonder if 9/11 didn't happen if I might have stayed instead of coming back to NC to be closer to family. Of course now looking back I know I made the right choice. I hope you have the same comfort in the future when you look back to these difficult days. I'm thinking of your family today and I hope Bella has a smooth day. Thank you for the updates.

  8. Tim - you gave me a hug a few years ago when I needed one, now I send a "virtual" hug to you. Hugs are a strength builder, a battery charger. Hugs to Bella (a very careful hug), Angelique and Ali as well. Love to all, Terri R.

  9. GOD bless and keep you all.

    "Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways acknowledge him,
    and he will make your paths straight."
    Proverbs 3:5-6

    Laurie from Texas

  10. This is my first time commenting. . but after reading how much they mean to you how could I not??? I found your blog from Jonah's blog and am so glad I did!! I pray for Bella & Daylon each night. I'm praying for their numbers to be where they need to be and that they will one day say " Yeah I was born with this rare skin disease but then it went away." God Bless!!!

  11. It sounds like you had a great day enjoying Minnesota's sights, what a blessing! It seems as if the good news is outweighing the bad in Bella's numbers....we pray that ALL the numbers trend positively and that she continues to heal while new cells prosper! All our love, The Gleason's (from Ruidoso,NM this week)

  12. Thank you for posting. And please, don't feel the need to thank me....I really feel like I'M the one who should be thanking YOU. For allowing me to be part of this journey...for teaching me to not take healthy skin for granted. You have made me pause in my busyness and HUGHUGHUG my children, b/c I know that there are parents who cannot. I watched the documentary on YouTube about Johnny. The man with EB who lived to 36 years of age. What an amazing spirit...I wish I could've have met him. These EB kids are truely special...Jonah, Tripp, Bella, Daylon...their quiet strength AMAZES me. So don't worry...and don't thank me...I'm praying, BY NAME, for each one of them...and I'm not gonna stop :)
    KC, MO

  13. Happy Birthday Ang (sounds like a good one given the situation)!

    And a big HURRAH for engrafment and avoiding VOD!

    I check your blog every day and thank you so much for sharing your story. Bella and your whole family are in my prayers.

  14. Glad you had a nice birthday Angie. Thank you Tim for allowing my to be apart of your world. Sending hugs. Heidi

  15. So glad that Bella remains stable though I can only imagine how frustrating the up and down and waiting game must be. Happy you guys go to have some time away. Happy Birthday to Ang and Love to your family. Still praying and checking in every day.

  16. Happy birthday Ang! I'm Daylon's auntie Kristy De La Cerda from norwalk and I'm praying hard for Bella . I'm so touched by your love a dedication to your daughter !! your a great family :) I will follow you as I follow Jennifer and Brian ..I wish only the best for you guys. Much Love !!Kristyn

  17. This is the first time I have posted a comment on this blog.

    I have been reading your blog for several months.

    I am praying for your sweet Bella, and as a researcher myself, I think that what you are doing is amazing. Without families like yours, we would still be years behind in fighting so many terrible diseases. Keep up the fight! You and sweet Bella can do it. My prayers go with you.

  18. See, now I have to tease you a bit about the Minnesota comment. We actually do spent more than a few months not encased in snow and ice. =) You are correct though, the road construction is a bummer. I know they can get a lot more done by shutting down the road for a weekend, but it can sure be a pain.

    Anyway, enough of that - I check in daily for your Bella updates and am keeping you all in my thoughts and prayers. What an amazing and strong little girl you have. No doubt she is destined for great things!

    I hope you are able to enjoy more of what Minnesota has to offer when you need a respite from hospital life. If you haven't yet, check out Como Zoo and Conservatory (free and they have an amazing butterfly exhibit), the Arboretum or the Children's Museum. None are very far from the hospital.

    Take care and best wishes for Bella's recovery!

  19. I am very inspired by the faith of your family and your strength. You will be in my prayers! Bella was born the same day as my daughter.