Thursday, January 3, 2013

New Year

Happy 2013 everyone!  We're just getting back into the swing of things after the holidays.  We had a nice visit with Chris' family, and then a fun little New Year's Eve of fondue and wine with friends and their 2.5 year old twins (making me appreciate more and more my one crawling kid!)  Now I am back to thinking about school, getting my classroom ready once again (it needed some TLC after my distraction before the break); it's also time to get back to the business of Scarlett's new treatment.

Today, we had a follow-up appointment with her neurosurgeon.  He says her incisions are healing well, and that she is safe to start chemo from his perspective.  He will see her in a few weeks when the healing is further along - scabs should be falling off (lovely) and skin closing - to make sure she is still infection-free once she begins chemo.

He confirmed that the tumor pathology came back as recurrent glioblastoma.  No ifs, and or buts.  Her oncologist has yet to get a sample for second pathology, so there are still some oncology-specific questions awaiting answers, but we know what we are dealing with.  However, he also showed us the post-operative MRI images to show us that the tumor, along with a margin of additional tissue for good measure, was completely removed.

Tomorrow, she will have another MRI at LPCH; it was scheduled months ago, and we all agreed it was not a bad idea to get some pictures of what is happening in her head before starting chemo.  We hope to see no additional tumor growth from the last three weeks.  It is the first time her new port will be accessed.  I hope she is as tolerant of the numbing cream, plastic wrap and giant needle as she was before...

The plan is still to begin chemo on January 11.  Scarlett and I will both begin school again on Monday, so it is back to the grind for us all.  We will once again be trying to find a new normal, a way to get through this next phase with our sanity intact.

Two years ago this week, the first gigantic tumor was removed in two 12-hour surgeries that nearly killed Scarlett.  She was only 11 weeks old...I know I posted these pictures a few weeks ago, but I keep going back to them.  I remember so vividly what it was like in those first awful weeks...we have come so far.

Jan. 4 2011: the night before the first big surgery (she had already had a biopsy the week before).  She couldn't hold her pacifier yet, but she would hold my finger as I held it for her.  By this pint, she had lost the ability to lift her head, visually track, and was having seizures that we did not know about.

A few days after the first surgery...in a warmed newborn bed, so swollen, unable to move her eyes, left arm/leg, or breathe on her own; severe seizures, getting blood transfusions around the clock.  The nurses in the PICU, who meticulously cared for her for the three weeks she was there, and every time since, recently told me how scary it was for them in those first days, that the doctors had prepared them for the worst.  So grateful for their compassion and bravery.

10 comments:

ELnOR0122 said...

I am praying so hard for all of you ... and most importantly Scarlett. Baby Girl, the world is with you.

April said...

Hoping and praying this is just a small remnant of the old tumor, just a few small cells they missed. If I remember right, they couldn't assure you they got it all the first time because of the size of the tumor and the void left in her skull. I hope she tolerates the chemo and that they are able to use drugs that won't further damage her hearing. Lots of love and positive thoughts.

Amy said...

I have followed Scarletts journey from the beginning and will continue to pray for all of you. I come across her story on BabyCenter (August 2010 Birth Club)and my heart melted when I seen her and then looked at my newborn baby girl. Lots of positive thoughts and prayers coming your way. Hang in there Scarlett, you did it once, you can do it again!

Child of God said...

Scarlett is one tough girl! She's has been through so much yet she is thriving like crazy.

Praying and praying that the surgery removed all of the cancer and it will not return ever.

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Töddel said...

Happy new year, Scarlett! Keep kicking ass, keep pushing those boundries, keep fighting and keep motivating your old folks to keep their heads over water. You are inspiring!

I am thinking of all of you in this difficult time, the unfairness of it all is so frustrating. This was not supposed to happen, you were finally on the right track!

Words are so empty, but still I urge to say something. I will keep checking in on you guys and sending all good thoughts I can muster.

4+1=5hopingfor7 said...

My Son was in the NICU for being born too early, but that whole journey only last 11 weeks. The 3 of you are some of the bravest strongest people i've ever known. Scarlett is beautiful and such an Angel! One day she will be able to look back on all of this, and see how much she was truely loved by so many. Thank you for sharing your journey with us all! God Bless you all.

annelies said...

Hi, I've never commented before, but have been a long time "fan" of Scarlet. I have a little guy a few months younger than her. Just wanted to let you know I am rooting for her big time. Also, I'm a Child Life Specialist ( used to work at Children's Hospital Los Angeles) but I now stay at home with my three kids. Maybe the child life/ recreational therapy team can help with some major disraction, medical play etc with the port access etc. I'm sure you guys are totally on it!

Pia said...

Scarlett has gone through a lot. I pray for healing and quick recovery. May 2013 be a better year not just for this brave young girl but for the whole family as well. May everybody be comforted to know and remember that NOTHING is impossible with God. The prayer of the righteous is powerful and effective. May God Almighty envelop you and scarlett with peace and joy that surpasses all understanding.

MC said...

Praying hard for you guys! Scarlett is a strong girl!

mg2287 said...

Just watched your video of Scarlett's 1st year for the second time and I was in tears. What craziness you've been through!!! Sending a big, big hug from the East Coast.