A HUGE Update

Madeleine's first cycle is two+ weeks down and she's doing extremely well! We were transferred to Children's Hospital on Sunday in order to be ready for the pheresis when her counts are exactly where they need to be. They explained that sometimes this process takes 2-3 days, depending on the number of baby bone marrow stem cells they are able to collect. The target for this trip is 7 million. Well, our little overachiever! On day 1 of aphaeresis they were able to collect 18 MILLION stem cells! The process includes having extra blood so as to not affect her total volume and side effects thereof, so after her procedure on Monday Madeleine felt like a million bucks :) She had a bath and stayed up to play, bounce in her chair and eat a little.

Tuesday morning we began with another aphaeresis in the event that something should go wrong with the first harvest or to have extra on hand for the future, i.e. she should relapse and need another transplant later in life. Tuesday's harvest was nothing shy of ridiculous - the harvest was done in less time than Monday and they collected 38 MILLION more cells! All of her counts have also come up to normal, which we are thrilled about. Her platelets have been pretty up and down, so she is going to be having another platelet transfusion today. Her oncologist, Dr. Davidson called us this afternoon to discuss her transfer back to UCLA and her current status. Once she gets back she'll have another MRI that will tell the doctors how effective the chemo has been so far in shrinking the tumor and if she is ready for the resection surgery. If surgery cannot be scheduled, her next cycle of chemo could really begin earlier than we originally planned - as in next week.

Madeleine needs to have all her counts up, be eating on her own and off IV nutrition and pain control before we can all go home for a few days. That has been the plan all along, but considering how well Madeleine is doing, it may actually be in her best interest to keep the forward momentum going and begin chemo to really get this tumor out! Her Doctor of course wants us to have that time at home for all of our rejuvenations, but in the bigger picture of things, we can rest a ton when she comes home cured. So that being said, we could push through and begin chemo by about February 8th or so.

In other exciting news, our friends The Antique Toys released their song "Dear Madeleine" on iTunes this afternoon! It's such a beautiful song and we feel it really does justice to her. The song will also be available on Amazon, Rhapsody and some others, it just takes a little longer for them to get the song up on those sites. We'll post the update when it gets on those sites as well. If you feel so inclined, please listen!
http://itunes.apple.com/us/album/dear-madeleine-single/id499281563

We've officially been residents at Mattel for one month.

The last few days have been tough on Madeleine. Her counts have dropped and dropped again, leaving her in pain, sleepy, irritable. The side effect seeming to affect her the most is mucositis, an inflammation in the form of canker sores from her mouth to her bottom throughout her GI tract - ouch! It prevents her from nursing or having her pacifier, causes persistent mucous drool and stomach acid reflux. Poor baby! We were finally able to balance her pain medicine to make her comfortable and she's been sleeping off most of her symptoms. 

She received another blood transfusion as well as platelets today that will hopefully help her to feel much better as they have in the past. They've explained to us that this period of time is her "rock bottom" and could last 7-10 days, or through the end of the month before she even BEGINS to feel better and her counts start to go up. 

Once that happens, Madeleine will be transferred to Children's Hospital Los Angeles where they will take 2-4 days inpatient to harvest her baby bone marrow stem cells from her blood stream through pheresis (CHLA has more experience with this process on children under 10kg). Her stem cells will eventually be given back to her in her "rescue" chemo treatment(s) after the surgery removes most of the tumor - when we get there. It's still a long road, but it feels promising to be nearly half way done with the first cycle (February 11) and to see that she's doing relatively well under the circumstances. We constantly remind ourselves and everyone who wants to cry about her pain and symptoms that IT COULD BE WORSE - THANK GOD IT'S NOT. She still has moments where she smiles, she coos at Momma or Daddy, or she "sings". Our baby is a strong little angel.