Sunday, June 24, 2012

MRI results

Kendall's MRI was on Thursday.  It was a long day to say the least!  The radiology department was running a few hours behind.  Luckily, Kendall slept for most of the delay.  She did great for her MRI and was bright eyed and ready to go when I got back to recovery to see her.  What can I say, my girl loves her propofol!  Who can blame her?

Thursday night after I was already in bed, her oncologist emailed me with the results.  He still had to get a hold of the urologist and neurosurgeon to get speak with them about it, so I was hesitant to get too excited quite yet.  This afternoon I was able to speak with her oncologist about everything.

I'm going to break down the results based on the area scanned so that I can use words I've never been able to use before with Kendall.

Abdominal tumors- STABLE

Pelvic tumors-  STABLE

Spinal tumors- Cervical tumor which was removed in November has started to grow back.  Her cord is not compressed yet.  We knew when we got this taken out that it would grow back, we were just hoping it would take many many years.  We are still waiting to hear from the neurosurgeon to see what he wants to do.  Basically, it would just be whether he wants to scan again in 60 days or wait longer than that.  We will just have to watch it.

Her left kidney seems to have gotten worse.  It is significantly more dilated then last time.  Since we had her bladder removed, both of her kidneys have continued to get smaller and better.  This is the first time it has changed for the worse.  She does have bilateral kidney infections again but this would not cause the kidney to be more dilated.  There may be some scar tissue built up in her ureter or her stoma that is causing the kidney to no be able to drain adequately.  This could be fixed by just redoing her stoma.  Something we hate to have to do but is SOOO fixable.  We like fixable problems!!  Kidneys are fixable!  Tumors are not.

Overall we are very pleased with the results.  I think we are getting close to spreading her scans out over longer periods.  We will just wait and see what the urologist says about her kidneys.  We may need to go back down for an ultrasound sooner than later.

On another Matt set up Kendall's big girl bed.  She's been sleeping on the mattress on the floor while we've waited for her new bed to come in.  I use the term sleeping when really I mean screaming, playing, causing no one to sleep:)  Here is the picture of her new big girl bed.

Wednesday we go to Riley for a sleep study to try to see if there is any medical reason why Kendall is not sleeping at night.  We need to make sure we cover all of the basis.

Last but not least, if you are interested in seeing the most amazing webpage in the world, click here.  Next click the donate or register button:)  Kendall's Army is looking rather pathetic compared to last year.


Monday, June 18, 2012


Not too much has been going on with Kendall.  I just got her an appointment today with the sleep clinic at Riley.  I'm hoping this will help us help her sleep through the night.  The first opening was the end of September, unless we could make it on Wednesday for a time that just opened up.  Well, I have to work Tuesday night so Matt will be the one taking her on Wednesday morning.  I hate that I will miss it.  As you may be able to tell from all of my posts, I'm the ultimate control freak with her health care.  I do realize that I would be worthless anyways without sleeping after work.

Kendall's MRI is coming up on Thursday.  It will be an all day event since she is having her complete spine, abdomen, and pelvis scanned.  It is usually a 4-5 hour scan along with the pre-procedure work and the recovery room.  All together I would guess we will be there for at least 7-8 hours.  She is also going to have another HVA/VMA test done.  This looks for the neuroblastoma.  The last two were elevated, which caused the doctors to think her cancer was back.  I'm really hoping this one is down so that they lay off of the cancer word for awhile.

Kendall is really working hard in physical therapy.  We have discovered it is best for her if I leave the room while she is working.  She seems to whine even more with me around.  I feel like it is time to start pushing her so that she can gain the confidence to start moving around on her own.  Hopefully she will get used to it after a few months and won't whine through the entire hour.  

Thanks everyone for the prayers for Thursday.  We don't worry too much anymore about scan days.  We are so used to hearing that the tumors are growing, we don't even expect to hear the word "stable" either.  It would just be nice to have little growth and no + urine so that we can go longer than 60 days between scans.  

Also, please pray for her kidneys.  I sense another kidney infection is on the horizon.  I'm putting off collecting her urine because I'm hoping it goes away.  Like that will really happen though.  I'm actually just hoping to make it until Thursday so that the urology nurses can cath her ureterostomies.  I hate doing it myself.