September 25, 2013

Home again, home again.

After nearly a month of travel, we are finally home again.  The seasons changed while we were gone, and it is very much Fall here now with the changing leaves and colder temperatures.

While we were in Coarsegold (where my parents live), we were able to visit Meme, the girls' great grandmother.  She is 97 and going strong!

 They had set up a little party for us with balloons and cupcakes.

After living with her grandparents for a week, Madeleine and I drove back to San Francisco for her stem cell infusion.  This was a very mini stem cell transplant.  They used her cells that were collected in Denver a couple of months ago and gave some back to her to help recover her counts.  Like chemo, the radiation that she received lowers her counts too, however, it's not a predictable three-week cycle the way that chemo is.  Her counts are low and will remain that way for about another week.  By then the stem cells should be growing into blood cells and she will see some recovery.  Her counts are low, but not too low for school or travel. 

These are the stem cells going in.  You can see them in the red line there.  The color is red because some red blood cells are present in the stem cell collection also.

While in the hospital we got to explore some of the activities and programs that they have for kids at UCSF.  We started in the school room, which is staffed by credentialed teachers.  Madeleine hung out there for awhile and learned how to build a Lego thing with a conveyer belt.  An engineer happened to be volunteering that day, so we were lucky to have met him and to participate in that.  Next we checked out the technology room where a different set of volunteers were teaching the kids about stop motion claymation (like Wallace and Gromit).  The story had already been written, but Madeleine got to move the clay objects one tiny movement at a time while the scene was filmed.

It's hard to see, but here she is working in front of the green screen.  Later they will put the movie together and email us the link to it.

After that we spent some time in the play room.  It's nice that they have so much for kids to do at UCSF.  Many of the kids on the oncology floor can be there for months sometimes.  Programs like these make living there more bearable.  

We were told to expect the stem cell infusion to last all day, but that we would be able to leave the hospital that night.  Of course, this did not happen and we ended up having to spend the night and almost all of the next day as well.  They test Madeleine's urine to make sure she isn't having an allergic reaction to the cells.  This is pretty rare since it's her own cells, but she could possibly have a reaction to the substance that they use to freeze the cells, or it is also possible (but rare), that some bacteria could have been introduced during the handling and freezing process.  The whole time we were there we were waiting for her urine to be clear of red blood cells.  I guess if there is a problem the first sign would be blood in her urine.  It kept coming back from the lab with smaller and smaller amounts of blood, but there was still some.  This was extremely frustrating.  The doctors finally let us go even though it was still showing a very small amount.  Her urine was retested Monday in clinic in Albuquerque and it is still showing some red blood cells.  So, I don't know what is going on with that.  They will retest again next week and see if it is a problem, or not.  This could have nothing to do with the stem cells, and be something else entirely.  It may not be a problem at all, I'm not sure.  
We  made it back to my parents' in Coarsegold late that night.  The next morning was a flurry of packing to get on our plane back to Albuquerque.  We left a lot of stuff there, but there is no way I could have carried any more bags - I was already traveling by myself with three small children!  We all survived the flights  (even the people around us.  On one of the flights Madeleine sat by herself next to a man that happened to have triplets - thank goodness he was used to kids) and made it home with only one small melt down from Laurel.

Now we are visiting Albuquerque once a week for labs and an exam.  The home health nurse is also coming to the house once a week for labs as well.  Once her counts start to rise I think we will only have labs once a week.  So, for now, all the way to the end of October, we get to be home!  At the end of October she will repeat all of the scans and the tests that were done before the MIBG Therapy to see if it worked.  If it is successful she will do it again in the beginning of November.  That is as far as I know.  We have heard a lot of talk about a full stem cell transplant being the next step, but no decisions have been made about that yet.

 That's Laurel, climbing everything in sight!


Anonymous said...

Laurel is learning how to play carpet monster young! <3

JT said...

What a ride!!!

JT said...

What a ride!!!