Day 9- New Years Eve

Thank you everyone for your texts, emails and calls to check on Madeleine, we truly appreciate everyone's concerns and wanting to hear the news. Of course our first priority is always the baby and speaking with the doctors and care providers before anything else.

The surgery on Thursday went phenomenally. Our neurosurgeon came out immediately afterward to confirm and reassure us that she was doing absolutely beautifully. It took some time to get her back upstairs and comfortable, even though she mostly slept off her anesthesia and we had lots of visitors, including our Dr specialists. She's a little uncomfortable with the healing incisions on her head but is handling the discomfort very well. We continue to watch over her very closely, snuggle her every opportunity and try to reassure her that we won't be in this place forever.

She looks amazing. This child has shown so many people what courage and strength look like. She is handling all of her procedures very very well, all things considered. Each day we set a goal whether it be resting, feeding, whatever and have met all of our daily goals over the last week. Madeleine is truly a strong little survivor in my opinion. She is doing so well, they've moved us Friday morning (at 2am) to the pediatrics floor out of ICU, and we've just learned that unfortunately due to insurance red tape, they're going to keep us the duration of this weekend and next week instead of sending us home so as to not jeopardize Madeleine's investigative tests prior to her chemotherapy. Apparently insurance won't cover the admission for her tests next week because they are considered "outpatient". :( so what's another holiday in the hospital....

It's too early to have the confirmation on the type of tumor she has; they think it's a malignant germ cell tumor of the pineal gland, which turns out to be not very common in people her age but does have a very high success rate of treatment. We do not expect to hear that it has spread to any other area of her body but they want to do a spinal tap to make sure. Over the next week-10 days, the specialists will perform the tests they need from the biopsy, prepare their recommendation for therapy, put in a central line access in preparation for her treatment and she will likely undergo a few more mini procedures such as another MRI and the spinal tap (mini considering what she's already been through). We are preparing emotionally & mentally for her to undergo inpatient chemotherapy, at least that's what we expect them to tell us, that could last 4-6 months. They've advised us that chemo could essentially begin immediately after the central line and spinal tap are completed. Our plan was to go home today and be re-admitted Wed or Thursday evening in preparation but have just learned that's not possible unless we have boo-koo bucks to pay for those tests they need. bummer!

As part of her chemotherapy treatment, Madeleine will likely need blood transfusions. She and I are an exact type match of A- so my first appointment to direct donate here at UCLA is Tuesday and I will continue to donate throughout the duration of her treatment as often as they let me. If you would like more information on how to donate blood for Madeleine, the website is www.gotblood.ucla.edu. I'll have more info on that after Tuesday.

Many of you have asked how Annalise is doing. She is coping much better; she fully understands that sister is sick and she is very concerned for her. Any of her confusion and frustration has been directed towards us, which we can certainly handle and are learning from the child development team here ways to help her communicate. She has been able to come and visit every day.

Please rest assured that although Madeleine has not kicked this thing yet, she is doing very very well. Our updates may become once a week and really appreciate your continued prayers. Hopefully by Annalise's 3rd birthday in June Madeleine will be 100% tumor free or at least cured as much as possible for us to have a much needed family vacation together. Until that day, please keep our baby girl in your thoughts and prayers.