Happy New Year 2010!!

Hello & Happy New Year 2010 to you all! I know it's been a while since my last update and lots of you are wondering about our little Warrior Princess. I'll try to bring you all up to date...

The week here with Don & Day for Christmas was wonderful... it's not without its challenges for sure having all of us in the same room - and Day ends up pretty sleep-deprived by the end of her visit. She enjoyed all the activity at the RMH, and loved being around her sister (who is just about the same size and surely within a pound of the same weight as her!). And Danika loved hearing the voices of her father and sister while they were here. Of course seeing Day wake up on Christmas morning and seeing all the gifts under the tree knowing Santa was there while she slept - well, that was precious! Unexpectedly, she wasn't all that interested in tearing into the presents as we thought she would be. It literally took several days and lots of encouragement from Don & I to have her open her gifts and 'help' Danika open hers as well. I think she was a bit overwhelmed. Can anyone out there relate??

We did make it to the Christmas Dinner at Becco which was really lovely. They had lots of activities for the kiddos and the food was out of this world delicious! Santa was there (or as Day calls him, 'Ho Ho Ho') and passed out gifts to all the kids and lots of photos were taken. Lidia's mother was there as Mrs. Claus and reminded me so much of my Noney, it was a bit scary - in a good way! Lidia and the Bastianich crew really pulled out all the stops to make Christmas special for so many families affected by cancer. It was pretty incredible. A bummer that Danika was just borderline neutropenic/not neutropenic, so we needed to keep her in her stroller and away from the crowds as much as possible. No pics with Santa for her!

Day also enjoyed her first snow experience as they arrived a few days after the big storm that left over a foot of snow on the ground here in NYC. We played around on the terrace here at the Ronald, so she had a safe and mostly CLEAN way to enjoy NYC snow. (Those of you who know me well are probably laughing thinking of what a germaphobe I am and how it's just like me to keep Day away from the 'dirty' and worse, 'yellow' snow!) =)

Another really great Christmas blessing was that all the cousins - there are eight in all - were here at the RMH on Sunday the 27th. My brother and his wife drove up from VA with their four children, and my sister and her husband and their two children who are very close to Danika at this point were, of course, here as well. This hasn't happened since before Danika and her cousin, Olivia (my brother's youngest, who is exactly one month older than Danika), joined the family in 2008. In fact, Day was just 7 months old the last time we were all together. My mom got to visit with all eight of her grandchildren in one place. Everyone snapped lots of pictures while the kids all grouped together and Danika sat next to them in the corner of a sofa. Day also got to see my Aunt Linda and Uncle Tony and cousin Stephanie who took the trip in from LI with my mom. It was a short-lived visit, sadly, as Danika had been a bit out of it with low-grade fever for several hours that day. (Not sure how any of those photos came out as she was pretty out of it.) After she reached 100.6, I needed to call Sloan. She was no longer neutropenic (as of the prior Thursday, Christmas Eve), but her temp was still too high and she wasn't quite herself, so they needed her to come into their Urgent Care Center to be sure all was ok and to draw cultures to be sure she didn't have an infection in her central line. She did need platelets and so she received her transfusion while in Urgent Care. Thankfully Don's Aunt (Aunty Lee) had come into town and so after we walked to Sloan and she and Danika were settled in their room in UCC, I raced back to the restaurant where my entire family was enjoying a delicious meal at Fratelli on 1st Avenue a few blocks from the hospital. (If you're local or plan to visit and haven't tried it, I highly recommend this restaurant - very yummy food and great, friendly service.) I got there at the tail end of dinner, but in enough time to enjoy the scene of the kids enjoying each other and to also enjoy some really great food. (I felt very special as my family broke into a round of applause upon my arrival!) Day was enjoying time with her cousins and on the walk back to the Ronald the girls broke into a chorus of 'Jingle Bells' (at least I think it was Jingle Bells - my memory is pretty bad these days!) - very cute. The kids enjoyed a great visit here before all the cousins had to say good-bye - a very special Christmas memory for sure. (By the way, for those of you who recall my 2am 'wake-up' banging on the door courtesy of Sloan and positive cultures for a line infection on the night of Thanksgiving after spending the day in UCC, you should know I kept the room phone ringer on LOUD and also slept with my cell phone ringer on loud and next to my head just in case I was to receive another late-night/early-morning phone call. Thankfully, that call never came and nothing ever grew back from the cultures they drew that day.)

After saying good-bye to Don & Day, as 2009 drew to a close, I planned to 'spread my wings' and spend several days on my own with Danika. I've thankfully had a friend or family member with me every step of this journey and, at this point it's more difficult and inconvenient than it is 'scary' or 'dangerous' to care for and be alone with Danika for long periods of time. I spent the evening of New Year's with my sister and her family and enjoyed a delicious home-cooked meal (thanks, Sissy!!) and, instead of ringing in the New Year on my own with a sleeping baby, I enjoyed some time with my lifelong best friend, Susan, who both surprised and blessed me by taking the train in to stay the night with us. (Thanks, Mike!!)

So, we began 2010 with 'mommy & me' time... what was nice is that at this point, Danika had completed the chemo cycle from earlier in the month, but the next one was not due to begin until that following Monday, so she was mostly feeling good and her counts were on the rise. We played a lot, got a bit of rest here and there which was nice, and I learned I can handle the vomiting and all else that comes with caring for this precious girl on my own. Although it's GREAT to have help, it's also nice to be able to care for my daughter on my own and know that I CAN actually do it. =) One step closer (if only in my my heart and mind at this point) to bringing her home and having my family all together again... I have to be able to do this on my own before I can even think about adding a three-year old into the mix, right??

So, Monday came and we began the 8th and last chemo cycle in this intermediate risk protocol Danika is on (COG-3961), which is actually her 10th round in total (she received one high-dose round at the beginning of our stay here in NYC and then one round of irinotecan before her surgery in October). It was one day of cyclophosphamide and doxirubicin IV infusions and so far she is doing well. Of course, there is vomiting, fussiness, sleeplessness, etc., but in general and as per her usual, you just can't keep a good girl down!! I should mention that just after New Year's, I came down with a sore throat and lots of congestion and sadly, Danika then got all congested, herself. Poor thing... while dealing with the yucky effects of chemo, she also had to deal with a runny nose and tons of mucous (gagging and spitting it up while trying to sleep) at the same time. They swabbed her little nose late Monday and, subsequently, we spent the remainder of our clinic visits this past week in isolation and/or in Urgent Care. (They are very careful to isolate kids who may be carrying any sort of virus so as not to spread to the other warriors there in the Day Hospital.) We also remained in our room at the RMH most of the time as well. All tests were negative for any viruses, thankfully! We are pretty well past that now and I can see the huge blessing in an illness happening last week while she is stronger, versus this coming week during the neutropenic phase, which is almost upon us.

In the meantime, we continue to work on getting her stronger and stronger. I was able to feed her tiny bits of pureed pears and apples these past few days (watered down a bit), today being the best experience so far - not much fussing and visible and audible swallowing at times - Praise God!! She loves to sit up [assisted, that is] and play with toys in front of her and will even reach into her shape sorter and take things out! This is great from an OT perspective from what I'm told. She seems to be able to catch herself and get her balance when she's about to lose it which is great and just the other day, when she was laying down and a small toy was caught under her arm she reached over her body with her opposite arm to grab it and pick it up - again, developmentally that is a big step forward! She is not to the crawling or pulling up phase yet - - just think of her as an overly large (yes, over 26 pounds!!) six or seven-month old - - but we will get there! Slowly, but SURELY, we WILL get there. I like to think of it with the the faith and mind of my precious two-year old... Day says, "When Danika gets better, then she comes home! I can teach her things!" or... "When Danika's better, then she can see me!!" (I love the 'WHEN' part of those sentences!) Danika's sight has not yet returned, but sometimes you wouldn't know it when you watch the speed and accuracy with which she'll grab or swat a toy, my hand, my face, etc. She's like my little ninja girl! For those of you wondering, it's so true about other faculties kicking in to compensate for the one that is lost. You just can't help but fall in love with her - - she remains a sweet little lovebug through all of this - my miracle! There is always so much HOPE when you take in just how far she's come... always remember there is HOPE. Trust in that!!

So, what's next for our little one - from a medical perspective anyway?? Well, a 'workup' (CT scans, MIBG scan, and bone marrows) is scheduled for the end of this month. Based on those results, the Neuroblastoma Team may recommend four more rounds of low-dose chemo (two rounds of cyclophosphamide/topetecan and two rounds of irinotecan/temozolomide), or they may decide to go in a different and more aggressive direction, the details of which are still unknown or undisclosed, perhaps. I prefer the former over the latter, obviously (although it means a minimum of 12 more weeks up here, in treatment, and away from our family in South Florida), and so we will be praying for good/steady/expected scan results. They want to see no progression, of course, and we want to see clear scans and experience restored vision!! Please - Let's come together to ask God for the miracle of clear scans, clean marrow, and for Danika to open her eyes and SEE the world around her!

Thanking you all in advance for following Danika's journey and for your continued prayers. You all are a HUGE encouragement to me - with love, faith, and so much HOPE -
Team Stanchi