Thursday, April 21, 2011

Longer

Good News:  Scarlett's first post-surgery MRI was CLEAN!  No tumor growth since January.  No problems whatsoever, other than the inflammation from the recent infection.  That will go away.  NO TUMOR!!!!!!  It is comforting to know that it seems we are on the right track so far, that our hard work so far has paid off.  We wait another two months for the next scan.

Not So Good News:  Scarlett needed more blood today.  She just can't keep her blood counts up right now.  Platelets are ok, red cells down.  Hopefully it levels out soon.

Good News:  She is playing with toys!  She is grabbing plastic key rings and rattles in either hand and hanging on, even shaking them once in a while.  Awesome progress on her hand coordination!  

Not So Good News:  We are not going home any time soon.  We had a visit from the Infectious Disease department (add them to the list!).  The consensus is that she needs IV antibiotics for at least 10 more days.  THey are not comfortable sending us home on the weekend, even with home nursing, because there is not the same hospital support staff available on the weekend.  Then...we start chemo again on Monday, if you can believe it.  Scarlett and I were home for a total of two days in this entire cycle, probably for the entire month of April.  We might hope to go home NEXT weekend, around the 29th or 30th, but know better than to make plans.

Good News:  We get to move back downstairs to the Oncology floor tomorrow.  We have been well taken care of on the surgical unit, but we are ready to go back to the quieter, calmer and more relaxed unit.  It is more designed for long-term stays, where parents have a double fold-out bed, access to water, refrigerators, washer/dryer independently and don't have to have so much monitoring.

Thanks for all the great suggestions for ways to thank the nursing staff.  I know, like all my teacher buddies, they are over-worked and under-appreciated much of the time.  I'll start planning something...

20 comments:

ShangriLa said...

Those are some pretty awesome "victories!" Even with the "bad" in there... I say the good wins out for right now! Goooo Scarlett! Chin up, you guys... you're doing great! You're always in our thoughts!

Jen D said...

OMG, that is fantastic about the MRI!!!!!! And I am so glad to hear you get to move back to a more comfortable area.

I'm sorry to hear about the blood and extended stay. :(

As always, you are all in our thoughts!

Malory said...

So so SO so very happy to hear that the MRI scan showed no tumor growth!!! I'm sorry that you won't be getting a break from the hospital, I can't imagine how that must be to not have your breaks for you guys to go home. But try to keep your head up and focus on the great news that the MRI brought! :) I will keep praying for your little butterfly, and for you and Chris. Hang in there!! <3 <3 <3

Jenn said...

I just let out a little yelp when I read NO TUMOR! Praise God. Hang in there, and have a happy Easter no matter where you are. You have your darling little girl to snuggle with. :) ~J

Stephanie said...

YAY! Awesome news! It is a bummer you will be staying in the hospital even longer, but it seems like the good things far outweigh the bad :) That is GREAT she is playing with toys and shaking them, awww! Hopefully she continues to feel good and you continue to make great progress! YAY Scarlett! <3

April said...

Wonderful news about the MRI - I think "NO TUMOR" makes all the rest worthwhile. The playing with toys, grasping and shaking is also so exciting. I think we need some video of that too!!!

Jen said...

SO happy to hear that the MRI was good! Yay Scarlett! Sorry you don't get to go home soon, but what you are doing is obviously working, so hang in there! I second the request for video of Scarlett playing :)

Jeff said...

Regarding your news:
Awesome!!!
Crap.
Super!!
Dangit.
Nice!

Hang in there!

bobwendi said...

OMG, OMG, OMG! No tumor....FABULOUS! She's kicking cancers' butt! YAY!

Sorry you'll be stuck in the hospital for at least another 10 days. Hopefully you'll get enough breaks to get out periodically and stay sane.

Thank you so much for posting such GREAT news! Just made my day! :)

Take care and God bless! Gotta believe that the prayers are working! :)

Bernice said...

Great news!! Scarlett is a wonderful little girl! You guys are amazing parents! People all around the world follow your blog and wish her well.

Mommy-In-Waiting said...

I'm glad the MRI came back showing no growth! That's wonderful!

Jamie said...

I am so sorry that she has to have more blood and that you have to stay longer but I am so HAPPY that there is no tumor growth!!!! YIPPEE!!!!! What a great Easter present!! Happy Easter and many prayers still being said for you and your family!

lindsey said...

Congratulations, Baby Scarlett! Keep up the good fight! We pray for you every day!

michelle said...

Hi Brandi,
I wanted to say that You and your family are my inspiration to give back! Locally here in southern California there are 15 month old twins who were both diagnosed with the exact same blood disease. Their only hope for survival is bone marrow transplants. Nobody has been a match thus far, but I joined the registry and have planned to go down early next week to see if I am a match for these sweet babies. I honestly had Scarlett in mind as I picked up the phone to contact the hospital who is dealing with the children. I know Scarlett's condition is completely different then theirs, but by continuing to keep up on the progress Scarlett is making, it has inspired me to do my best to see to it that the twins get a fair shot at growing up too. Since having my daughter in October as well, I have been humbled by the strength that you and your family have. I thank the good lord every day for my health, and the health of my family. And because of my good health, I am truly blessed to possibly be able to help the sweet babies that need bone marrow transplants. Just please know that I would have never thought to be this selfless if it were not for you guys! Thank you for opening my eyes! Little Scarlett's story has touched lives in ways you all may never know. Thank you for being so open about her condition and progress. I truly believe that it will continue to inspire more people just like me to donate and help save lives!

Love Michelle (OCT2010 BBC)

Sylvia said...

Excellent news!! Sorry to hear about the other not so good news, but tumor free trumps it all! Wishing you a Happy Easter - hopefully you'll get some down time and be able to enjoy eachother and be together.

I have to comment on Michelle's post - WOW! Truly amazing and inspiring - pretty remarkable to hear how God is working through you guys and touching others. He is so amazing! Thanks for sharing Michelle.

Amanda said...

The good news is so much better than the not so good parts and I am so happy for that!! What a tough little cookie Scarlett (and her parents too!)is!

Happy Easter guys...sorry it's in the hospital.

Haley said...

I definitely think your good news outweighs the bad. The 'No Tumor Growth' news is great!!! So happy for your family and will keep you all in my thoughts:)

jesshaydel said...

Praise the Lord for the good news of NO TUMOR GROWTH. I am very sorry to hear about needing more blood and having to stay longer, you continue to be in my prayers.

Virginia said...

Easter Blessings for sure!

sillykitties said...

I agree with Virginia, Easter Blessings for sure!!