Monday, November 7, 2011

1st Bone Marrow Birthday

Yesterday was Jackson's very first Bone Marrow Birthday. I have to mention that it is his first, because he will have three Bone Marrow Birthdays.

So far, things are going very well. We got admitted in the hospital on Friday, and Jackson got the two separate chemo drugs both on Friday and on Saturday. Jackson started out loving the showers, but by the third one, he was tired of the shower, and super upset that he had to have his central line site cleaned over and over again- basically 4 bandage changes a day, and they are extremely painful for Jackson. Thank goodness he's done with the showers for this round!
Jackson waited very patiently for Daddy to arrive at the hospital. He watched out the window non-stop for about 20 minutes waiting for our car to drive through the security gate.

Yesterday was exciting and interesting and even a bit anti-climatic. The entire nursing staff and some of our favorite housekeeping staff all came into Jackson's room at the same time and sang "Happy BMT Birthday" to Jackson to the tune of "Happy Birthday". They sang loud, and cheered lots. It was all very exciting.

Once everyone left the man who was wearing the white lab coat brought in with him the big Bio-Hazard canister. He did lots of prep work to thaw out Jackson's stored stem cells.

Once the cells were thawed, he handed the bag over to our nurse, who hung them from the IV pole, and they slowly made their way down the tube into Jackson. It only took about 10 minutes for all of the cells to get to Jackson.

Now we wait for them to start growing (the doctors call that "engraftment"). Before his new cells grow, however, the old cells have to die completely.

Here's a very simple explanation of Jackson's Bone Marrow Transplant (BMT). Jackson's current bone marrow is cancer free, so in theory, he doesn't technically NEED a BMT. However, the research shows that AT/RT is a very stubborn tumor, and doesn't respond to more gentle chemo drugs. So, they hit the tumor with super harsh chemo, to kill every quick growing type of cell (the tumor as well as hair, and other things). Because the chemo is so harsh, it also kills quick growing cells like stem cells. Once stem cells grow up, they turn into bone marrow, and because the chemo will kill all quick growing cells, Jackson's bone marrow is now non-existent. To help Jackson have bone marrow again, they did what they call Stem Cell Rescue or a BMT for Jackson. They gave him new bone marrow or stem cells, and now we wait for the stem cells to turn into marrow. When that happens, his counts will come up (engraftment) and we get to come home.

Because Jackson's tumor is so stubborn, we will do this three times, and hope that the process has destroyed the cancer that is in Jackson's head- and that he can again be cancer free.

On an interesting side note: When they freeze the stem cells, they have to add a preservative called DMSO. DMSO helps the stem cells not die during the freezing and thawing process. But because the stem cells have DMSO in them, they had to pre-medicate Jackson before they could give him the transfusion. They gave him hydro-cortisone, Benadryl, Manitol and Tylenol. All of those help prevent some of the side effects of DMSO, but something they can not prevent is the smell that comes with DMSO. The smell is NASTY. It smells like creamed corn. The entire hospital room smells like it, and Jackson smells like it (especially his breath). The smell will probably hang around for 2 or 3 days and let me tell ya- I don't want to eat corn any time soon. Blech.


  1. I love you! And all I could think about was "health in the navel, marrow in the bone" Keep kicking that cancer-dragons butt!

  2. Happy Bone Marrow Birthday to you! I think this calls for cake! You guys never cease to amaze me. I love you every day.


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