From Daddy

Good morning everybody! Just want to let you know that we slept like a champ last night. Our vitals have been perfect. And we're eating as much as our sister, if not more. And on vomiting at all!

MRI Results & Update

Thank you for your patience. We have been selfish over this weekend by not sharing the results of the MRI from Friday so we could spend as much quality time with the girls as possible.  

We waited nearly all day Friday to receive the word on the MRI. The attending doctor for the week indicated he thought the tumor appeared to be "a little smaller" which didn't resonate with me initially although Daddy was very optimistic and happy to hear that bit of news. Shortly thereafter our doctor came to give us the good news: the tumor which initially looked like a healthy, living, large organ now looks like a shriveled slice of dried apricot! It no longer appears to be connected to any of the surrounding brain tissues and is small enough that the neurosurgeon is confident he can go in and remove what's left of the tumor.

Getting this news, we were absolutely overcome with tears and emotions of joy, relief and happiness. It felt as though this whole last month we've been holding our breath, afraid to breathe and now we could finally exhale. It was so emotional! Even our oncologist is amazed at how quickly the tumor shrunk and was bringing members of our support team to see the MRI pictures. We were then discharged about 5pm on Friday and have spent the last 3 days home and with family.  

Tuesday morning we are taking Madeleine back in to have her labs drawn and we could be sent home the rest of the day or admitted for the surgery that is scheduled for sometime Wednesday. What we initially thought would be a shortened treatment plan as a result of having the surgery earlier turns out is not the case: Madeleine will still have to endure another round of induction chemo and then up to three cycles of the transplant therapy. This was extremely disappointing news. Of course we want her healthy as soon as possible and we understand if this is what she has to go through to ensure the cancer cannot grow back, then so be it. We were just under the impression that the surgery would in effect replace some of those chemo treatments by removing the tumor.   

Trying to sit up by herself

Since being home, Madeleine is overall a happy baby. She really enjoys sitting up, looking at faces and talking to you. After being in a hospital bed for so long I can't blame her. We all seem to be sleeping much better at home in our own beds too. She is having a little bit of trouble essentially "re-learning" how to eat. She gets frustrated very easily with not being able to get comfortable or latch properly and has taken to crying more than what we're accustomed to. It's important that we're monitoring her eating and urine so she is not getting dehydrated so it's been a challenge for Mom, especially when she's just as frustrated with and basically refuses a bottle. One day at a time.

So the plan: Labs Tuesday morning/Admitting sometime Tues or Wednesday/Surgery Wednesday/recovery 1-2 weeks likely inpatient. We hope to provide an update Wednesday after the surgery. 

Please continue to pray for Madeleine! We know she has angels watching over her and we know and trust that God is working a miracle in her by shrinking the tumor so quickly and by her strength and endurance. Her journey is still a marathon and we all need endurance to prevail.

February 2 Madeleine's 4-month birthday

A quick note...

We came back to UCLA around 12:30 a.m. on Wednesday. Madeleine's pediatrician Dr. Shapiro came by the hospital about 9:00 to check on her and talk with us about how things have been going so far. Remember she was our doctor that initially asked so many specific questions about the size of Madeleine's head that tipped us off to Jeff research and discover her condition. She has been great through this whole process being very supportive to us. She was very pleased to witness how well Madeleine controls her neck sitting up and looking around and how she's actually meeting some of her milestones early! =) She's already clasping like prayer hands and really wants to roll over from her back: that will take some time because we never get time on the floor being at the hospital so far but even with her tubes connecting to her central line on her chest, she's trying to roll over those lines. 

The best milestone she just reached this week: she can laugh :D I'll try to catch that on a video in the next couple days. It's absolutely adorable!

We also got to visit Annalise last night for the first time in 12 days :) We all missed her so much and she missed her baby sister and us. She's getting so tall! Her vocabulary has expanded leaps and bounds. She's been talking in full sentences and now with more topics. I'm so proud of her that she's really so intelligent and picks up so much around her from all us adults. We were ready to start her in school to be around more kids and that plan changed when Madeleine entered the hospital since preschool is a germ cesspool. We have to remember regularly that this journey is temporary and eventually our life will get back to normal, the hospital and sister being sick has become a temporary new normal.

Madeleine has a few tests today including her MRI and we might be able to go home today or Friday but it would be for just the weekend if we go. She has done so well this cycle and has recovered faster than we planned for; her cycle was "scheduled" to be over on February 11th. Considering that her oncologist has recommended that we begin cycle 2 next week rather than waiting. We look at it as that's 7 days sooner that she could be completely well again. We'll update again once we know the results of the MRI. Let's hope it's a game changer for the better! Much love to all <3