Jillian Rose’s CP Blog

September 9 (I think), 2008

September 8th, 2008

“Nee How” friends and family!

This morning, Monday morning to us and Sunday night to you, in doctors’ rounds, Dr. Mike announced that the cells are growing “very well” in the culture.  Yaaaay!!!!!

I asked, based on how well they’re growing, do they have an idea of how many injections we might be able to get out of them, and he said probably 4.  Yaaaay!  Which my understanding is that, for instance, when an adult has a bone marrow transplant, they usually only get one injection.   I was expecting maybe 3, and that was being reasonably optimistic.  Dr. Mike even made the comment that maybe even the cells will keep multiplying and she may be able to receive 5 or 6.  So, as I’m sure you’re gathering, we have NO IDEA when we are coming home.

I was told that she would receive her first IV stem cell (from her own bone marrow) injection on Wednesday.  I was expecting it to be a little sooner; but I guess today is too soon, and they don’t do injections on Tuesdays, so Wednesday is it.  From what I hear, the IV injections are very easy……..meaning there are no food and water restrictions before and after, and they don’t have to be sedated like with the spinal injections.  But there’s still the dreaded and sad IV insertion…..    And that darn topical Lidocaine DOESN’T WORK.  It doesn’t numb the site AT ALL and she still feels it.  After they insert the IV they will give her a bag or two of fluids through it, then she will receive her magic mixture for about 45 minutes.  And she can eat and drink right after.  Although the IV will stay in place, but not hooked up, for a full day.  Unless this one blows out too.  The last IV, inserted and left in place as a precaution from the bone marrow collection, “blew” after a few hours and had to be removed.  After the last IV was inserted we covered their bandaging with Sesame Street band-aids, which did serve as a temporary distraction.  So I guess I better have them ready on Wednesday.

It sounds like her first spinal injection won’t be until next Monday (Sunday night your time).  This is what I’m assuming since the IV is on Wednesday, so I wouldn’t think the cells would be ready again in just 2 days.  Regularly, with the typical umbilical stem cell regimen, they would get an IV injection on, say, Wednesday and then a spinal on Friday.  But in that case, the formula is flown in already prepared.  In Jillian’s case, her cells are culturing, so I would think there would not be enough time for enough to culture in two days time. 

With the spinals, there are food and water restrictions, before and after because of the anesthesia.  Before her bone marrow collection she couldn’t have anything to eat or drink for the 6 hours before, and all morning she kept looking at me and Mom and smacking her lips, telling us “hey, you’re slacking…..where’s my cold water and Cheerios?” 

The main worry I have is that she might lift her head after the spinal, which is a BIG NO-NO.  If she does that she would get a pretty bad headache for 2 days.  The problem is that lifting her head is part of her communication to me……it’s her way of saying “I want to get up” or “pick me up Mom.” 

Okay, so we’ll go over that bridge when we get to it.  And with all of you behind us, I know it will be an easy bridge to cross.

Do you know we haven’t seen the sky since we’ve been here?  ONE day there was sunshine.   If it weren’t for the blue nurses’ uniforms, or blue shirts, cars, or towels, etc., I think we’d forget what the color was.  The pollution is really bad.  Do you know that our floor of the hospital, the 20th floor, considered the VIP floor, is the only air conditioned floor in the hospital (except for the surgery suite, etc.,)?  Do you know that there are no child car seat laws here?  Do you know that the lines painted on the street don’t mean a darn thing?  Do you know that cars, not pedestrians, have the right-of-way?  Do you know that every time you order chicken cashew, you never know what you’re going to get?  It’s different every time.  Do you know that there is a one-child-only law here?  If you have a girl, then you are allowed to try for a boy in 5 years.  Do you know that a driver’s license cost $25,000 RMB, which is like $3,500 USD?  Do you know that an MRI here only costs $30 USD?

Anyways, there’s some useless trivia for you that might come in handy one day.  Jillian is sleeping now, and I have to wake her up because the electrical muscle stimulation therapist is coming in 10 minutes.  I sure hope she’s in a better mood this afternoon than she was all morning (she was up for a couple of hours during the night last night)!  Wish us luck!

 Sending you all some love that’s stretching around the globe………!!!!!!!!!!!!!!! 

Hugs and kisses,

Tami and Jillian

Entry Filed under: cp,Uncategorized