Saturday, January 22, 2011

Weekend 4

It is our fourth weekend spent in the hospital.  We finally got moved upstairs to the surgical recovery floor.  We waited through three days of being told there was not a room available for her, then suddenly, at 1:00 am, Chris got the signal to move.  Time, let alone sleep, means nothing in this hospital.  When they say go, we go.

Now, Scarlett is resting comfortably in her regular crib (she had been in a heated bassinet in PICU).  She is surrounded by a menagerie of stuffed animals that her daddy decided she needed to keep her company.  She has also started eating like a contestant in an eating competition - 4 ounces ever few hours, and finally gaining some weight (about 9lbs 11oz now). 

We haven't heard about the liver ultrasound yet.  As soon as I see a doctor this morning, I will press for answers.  Changing floors means changing primary doctors (the surgeons are in charge of her care, but they see her once a day) and that means I have to make sure they are tracking all the issues we were watching in PICU.  the rash has gotten better with some medicated lotion.  Several doctors have looked at this rash, and they have all agreed it is nothing serious.  I have very sensitive skin, so it is likely that she does too and is reacting to something around us.

Yesterday, we met with our awesome oncology team at Stanford.  They laid out the options for continuing treatment.  We are still making some decisions, but it looks like Scarlett will begin chemotherapy very soon.  It will likely entail cycles of a few days in-patient, a few weeks out for the next year.  We are looking at enrolling her in a research study that is done locally in conjunction with St. Jude's Children's Research Hospital.  The study is good because it is showing some good results with other kids, and it has been continuously running for a few years now.  We are also determined to have Scarlett's experience help other kids in the future, so including her in the study contributes to the greater knowledge about these tumors.  However, the study protocol might not be quite right for Scarlett over time, and the doctors have assured us that if she needs something else, they will drop the study and give her whatever she needs.


I'll write more about the process of chemo later; it's overwhelming to think about sometimes, especially the side effects.  However, we remain optimistic that Scarlett will continue to be strong and come through this.

24 comments:

Cristina said...

Our family continues to think of you both and Scarlett on a daily basis. The positive news is uplifting and you can feel the hope in your posts. Our thoughts and prayers are still with you all so that Scarlett can overcome this and live a fulfilling life!

Jeff said...

It is so good to hear this. Gaining weight! Awesome! Keep it up fighter girl!

Sandy said...

It is so great to hear Scarlett is gaining weight. That is so fabulous. Sensitive skin, hum. I found that the tape they use for all the lines was irritating my skin royally. That could be Scarlett's problem too. As soon as all the tape is gone she will probably be rash-free. [fingers crossed]
Good positive thoughts still coming your way.

Julia said...

Praying for you and your beautiful girl!

Shannon said...

I don't know why I didn't think of this before when you wrote about the rash, but I'll tell you now. I used to work in an ICU (not PICU, but regular adult ICU). There were several patients who were allergic to the bleach that the hospital used to wash the linens, and would get a rash all over their bodies. They would have to get special linen from the laundry service that was cleaned thoroughly, but not bleached. This might be something you could inquire about to see if it helps her skin!

Paula said...

Surely Scarlett will successfully go through all the process, she´s such a fighter.
Keeping all of you in my daily prayers and positive thoughts!
Much love for you and the Tiny Little Butterfly!:)

LeAnn in Fremont, CA said...

Oh sweet Scarlett that is the BEST news that you are eating so well and gaining weight..keep it up Butterfly!! Our whole family is following your everyday progress very closely and i am continually amazed by your strength and the strength of your loving and committed parents! We are cheering you on like the people from the sidelines of a marathon race, and you three are inching your way toward the final stretch of this race and we couldn't be MORE PROUD!! I know these next few miles won't be EASY for you OR Brandi and Chris with the hurdles of chemo. to get through, however I know how strong you've been and you all continue to be, so I cannot wait until this race is complete and we will bring down the house with our thunderous cheers and applause for the amazing journey you all complete! Keep going Sunshine...we're right there with you all!! (Aside)I, too, roared in laughter when i read Chris's LAST post and thought a couple paragraphs in....Hmmm, Brandi likes Cuban Cigars..that's interesting...well, whatever gets ya through, you more than deserve it!! HaHaHaHa...Chris you deserve it too, and i hope we provided YOU all with a much needed laugh!! I felt less silly when i wasn't the ONLY one! Hahahaha! Take good care you guys, we are all here to support you both and Scarlett's journey! Sending our Love to you and precious baby girl~ The Resh family- LeAnn, Mike, Michaela & Landon xoxo

Anonymous said...

Keep pushing through baby girl!

kerriwike said...

I continue to keep Scarlett in my thoughts and prayers and check in everyday. I'm so relieved that she is still doing well, and even gaining weight. Way to go Baby Girl! I can't imagine what you must be feeling, facing a year of chemo for your little butterfly, but she's a strong girl and I can't help but to believe that she will get through that too, and grow up strong and healthy. May God continue to bless you all, take care!

Anonymous said...

We're all praying for Scarlett and her family here in Boston, MA! So happy to hear that she's gaining weight! She is a fighter, that little butterfly and please know that you have good vibes and thoughts, and prayers coming your way. Stay strong and keep up the good work! : )

Noelle (BBC July 2010)

Caro said...

I have been reading your blog and I am sending you, your husband and your beautiful baby girl my prayers and good energy from Colombia (South America).

Anonymous said...

You guys are amazing. Your daughter is so blessed to have you fighting for her. Thoughts and prayers from Los Angeles!

Kristina said...

I am sure you have thought of this, but my mom is allergic to the tape they usually use in hospitals, so they have to use a special one for her.

Also, I had cancer when I was 2. I went through surgery and chemotherapy. Lucky for me, the chemo wasn't too long term, and all is well 24 years later. Keep fighting, Scarlett!

Tara said...

The 3 of you have come so far! You guys continue to be in our thoughts and prayers. Thank you for the continued updates. Don't forget to get your rest too!! Keep fighting Scarlett!

Laura said...

It is amazing what your family has been through and I am glad you are writing to help yourself and others experience it.

Keep being strong! Thoughts and prayers!

Holly said...

YOU ARE AN AMAZING MOTHER!

Don't ever forget it!

Amy said...

One foot in front of the other... you guys are doing so great. I think of you all the time and really appreciate the updates. I'm so happy about the eating and weight gain! And that you get to hold your precious girl again. Hugs to you all.

Hamblenarmywife said...

and as I've said it many times before in my comments about little Miss Scarlett A-M-A-Z-I-N-G I just love hearing the good news about her it makes my day seem so much sweeter!! Way-2-Go Butterfly you are an amazing little fighter!! Gained weight woo-hoo thats awesome!! Keep fighting!!
** Brandi and Chris**-you are the most wonderful,and incrediable parents I know!!

Thinking and praying for you three every day!! {{hugs}}

Christina said...

You made my night! YES YES YES! Here is hopping the news just keeps getting better and better every time you post. Kaitlyn and I are always thinking of the three of you. Scarlett is amazingly strong, brave and a fighter.
E!3 (that is a butterfly)

Amber said...

})i({ Keep fighting Scarlett!

Shelly said...

Hi Brandi,

I have been following your blog and I am amazed at how well your Baby Girl is doing! I know how tough it can be to go thru some of this since my husband was diagnosed with Colon Cancer in 2009...we definitely had to rely on the strength of God and keep our Faith focused which was hard at times. He is inspired by your little butterfly! As for the Chemo, we were nervous at the beginning as well especially when we heard all the side effect that COULD happen. He blew through the first round of Chemo no problem, he did have one side effect stay with him which was neuropathy but, everything else went smoothly. He was clear for 6 months and the cancer showed back up so he is going thru his second round at the present time. Scarlett will get thru this, with your faith and trust in our amazing God. The only advice I can give, is enjoy each day and remember why each day is so special! God gave it to us! We lift you and your family up in our prayers daily. We have you all in prayer circles around the US. Keep the Faith and God will amaze you! Shelly Maselli

Anonymous said...

I am just amazed at your baby girl--what a fighter! We will keep praying for her! God is great!

Kassie said...

I believe that Scarlett's story will be an inspiration to others, and your love and devotion is a testament to what being a parent is truly all about.
Prayers and thoughts are with you everyday!
Kassie, Zach and Makaia Price

Anonymous said...

So happy to hear Scarlett is finally surrounded by the innocence of what every baby needs - stuffed animals! Good call, Chris and way to go, baby Scarlett. Your butterfly continues to be demonstrative of God's loving grace. We'll continue to keep you in our prayers!