Wednesday, March 21, 2012

Sorry for the hiatus, I just haven't felt like writing much.
Kendall had her MIBG scan today.  We went down to Cincinnati yesterday for the injection.  She had the worst cold she's had in her 19 months here.  I was worried the anesthesiologist would refuse to sedate her with the cold she has, but we were told she should be fine getting the general anesthesia.
Today went ok.  She woke up very grumpy because they had to put the tube down her throat and give her other meds along with the propofol.  She started coughing during the scan so she had to be sedated even further.
We got home this afternoon around 4.  She started vomiting when we were within 5 minutes of home.  Then she spiked a fever of 102.6.  It has come down now with tylenol to 99 but I'm afraid it will creep back up in her sleep.
Surgery is scheduled for April 25th.  She will be in the hospital however long it takes her to recover.  She will then have to wear a hard shelled brace for 6-9 weeks afterwards.  Hopefully it will keep her scoliosis from getting worse with the surgery.  As it stands, she will have to get fusions and rods put in when she gets older due to the severe scoliosis.  We just need to prolong it as much as possible so her body is stronger.
The goal of the surgery is to take another tumor out of her lumbar spine.  It won't all be able to be removed because it extends out into her abdominal cavity.  It will grow back eventually.  All of the other tumors in her spine are small enough now that the risks would be too great to remove them.  She pretty much has them all through her lumbar spine.  It looks like the neurosurgeon will be in our lives as long as Kendall is here.
That's about it for now.
We are currently raising money again like we did last year for our walk.  We will be walking for Kendall since she can't walk for herself.  Please click here to make any donation to our cause.

Monday, March 5, 2012

Sleep, where or where are you?!

As you can probably tell from the title, Kendall is still not sleeping well at night.  I think she is waking up so much that it is actually effecting her during the day.  In the past, she would stay up until 12:30 or 1 before going down for her afternoon nap.  The past week, she has been asking to go down for a nap by 10:30.

I'm still waiting to hear back from neurosurgery on the date of her surgery.  I'm actually not losing sleep over this.  I'm not too anxious to get this one on the books.  We did get her MIBG scheduled.  It will be on March 20th/21st.  I hope I made the right decision in doing this extra scan.

Here is a video I shot last week while it was warm out.  Kendall loves going outside and riding down the driveway into the street.

Here is another one of her last Friday when we went out for pizza.  If you notice halfway through, she turns towards me and spits everything out.  It was pretty funny watching her pick up that pizza like she eats it everyday.  It is very rare that she takes this kind of an interest in food.  Excuse the over excitement we exhibit here but this is our life with Kendall.  The normal things become the miracles that we live for.

Tonight I took Braden to go see the movie "The Lorax".  I highly recommend it to everyone.  It was heartwarming to say the least.  I have to say that the quote that inspires the movie is one that I needed to hear tonight.  "Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not." 


Thursday, March 1, 2012

Good News at last!

I got the call about the urine when  I was on my way to work last night.  Her HVA/VMA levels are down.  They are still not normal but they are down!  Down is the way we want them to go.  Up would mean more chemo.
Despite the fact that they are down and it is pretty certain that her cancer is either gone or controlled, the oncologist is still recommending one more MIBG in the next 2 weeks.  AFter that shows now reactive tumors, we will move to urine testing less frequently and MIBG's less frequently.  Matt and I still have to talk about what we want to do.  It is such a hard decision to make.  I'm not 100% convinced she needs the test but I do trust her oncologist.  

I still haven't heard about her cdiff test yet.  I forgot to ask about it last night.  I'm hoping with fingers and toes crossed that it is negative.  I'm a little confident it may be because they would have addressed it last night if it had been positive.  

So overall we have good news to celebrate.  No chemo is always a wonderful thing to hear.  We are also going to start a new medicine to try to help with sleep, and nerve pain.  It may be able to replace a few of her meds and has less harmful side effects.  I have to wait until we go back down to Cincinnati to get it from their pharmacy.