Tuesday, January 24, 2012

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.

3 comments:

  1. You sure do have a string angel. Continue prayers for your family. You are keeping up so well. Won't stop praying.
    Ryana

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  2. God Bless you all and our prayers go out to you and your precious baby. Just wanted you to know that people care and are sending their love and prayers. So wish we could do something financially, but prayer is our gift at this time. May God keep you all in His loving care.

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