December 24th, 2010 - Gold, Frankincense, Myrrh and Marrow - Day 0

And the wise men brought... Gold, Frankincense, Myrrh and Marrow

Day ZERO!

This will be a daily account of things…

We are all up at the hospital and waiting. I don’t even know for sure if the little marrows have arrived. I think they must have, but I can’t wait to confirm this… I have just given Alex a shower and put new sheets on her bed. My friend Natasha gave us some adorable Christmas sheets, so I have chosen them for the festivities. Thanks so much Natasha for the great care package!

Woohooo! The little marrows are here! They are in the process of being cleansed. They think they’ll even start earlier than expected. So… at least those little suckers made it in on the airplane. It was so foggy last night I was thinking “oh! no! you! don’t!”

Alex’s counts have reached zero today. Her own bone marrow has officially stopped making cells. Even though this sounds super scary, it’s what they need to happen for this new bone marrow to find it’s home.

They are running more blood labs on Alex right now. They are checking the anti-rejection drug, Prograf level. They want to make sure the level is just right before the infusion of the new bone marrow.

I wish I could personally thank the incredible donor that took time out of their holiday season to donate these stem cells that will save my daughters life! Thank you thank you!!! I so hope we get to thank you in person in a year’s time. If Alex survives the year, and both parties agree, they will give us all the information on the donor. Right now all we know is the marrow arrived by plane… from a 26 year old female that has, at one time, traveled to Europe.

There is a lot of Christmas cheer up at the hospital today. There are SO many donations of great things for the kids. I think a lot of parents past know the feeling of being up here at Christmas. Most donations seem to come from past patients. There is a kid across the hall that is obviously celebrating Christmas in his room. It’s packed full of gifts! I am so glad we had our Christmas prior to coming here. There is little room in the room as it is.

Well, we just learned some new information. The BMT team came in and said because there is some major incompatibility with Alex’s blood type and the donor blood type, that the infusion is going to be a bit different and lengthy. The cleansing process of the marrow is to take out as many red blood cells as possible. During the spinning of the marrow to remove the red blood cells, they have to add saline to the cells that remain. This creates a lot more volume of product. Because the volume is so great but she still needs all the cells that remain, they have to break up the infusion into two different parts. Sooo… our hour and a half infusion time is now a total of 8 hours of infusion… with a four hour rest period in between bags. This process will finally be complete somewhere around 2am. This definitely stressed Alex out. But… after hearing about the reasons it makes more sense.

So, I met the guy from the lab that came over with our cooler of bone marrow. It was really an incredible situation. The lab guy stays until it gets hung on the pole and it starts to go. The doctor and the BMT nurse verify the product with the lab guy on several different occasions. In addition to all this, we had several others stop by with good wishes, gifts, and a very rare t-shirt. They normally sing Happy Birthday also, but Alex was very firm on the “please no singing!” It took about an hour for things to get underway, so a bit stressful to have so many people in the room for that long. It was a good thing we decided that there would be no visitors today.

It is now 3:00pm and the bone marrow has been flowing about 20 minutes now. It’s proving to be a stressful infusion. Dave, (our nurse who I handpicked yesterday) has to stand at the IV pole the entire time. Bone marrow is not run through a pump system like everything else on her IV pole. The pumps injure too many of the new cells, so it’s all done by gravity. To make the infusion last longer the nurse has to open up the valve, let a few drops in, and then close it off.

So… we are watching the Sopranos and waiting for this first bag to finish up. The nurse is getting an education in the Italian mob scene. It’s a strange program to be on the TV up here at the Children’s hospital.

Thanks for tuning in everyone. I hope you enjoy the photos of the day. I gotta say… watching the lab guy bring in the cooler with my baby’s new bone marrow, brought tears to my eyes.

Merry Christmas everyone!

Alex with her Christmas sheets

The cooler arrives! Dr Boyer and the lab guy pose for photos. This guy has worked on these cells most of the night.

Two tiny little bags of marrow... both hooked up to digital thermometers

The Three Wise Men

Double and triple checking...

Only a few people have one of these t-shirts... says "recipient" on the back

Dave (our nurse) checks the marrow one more time

And off we go...