March 8, 2013

VERY QUICK UPDATE!

Most of you know that we had to run with Kass to the ER on Monday, she called me from practice saying that she could not walk and was having trouble seeing.  She was so upset on the phone I flew up to the high school.  When I got there she was crying and was completely scared! Ryan had called the clinic and the doctor suggested we take her to the ER to make sure there was no brain bleed or edema.

At the hospital the doctor opted to do an MRI since she was due for one and the MRI would show everything we needed to see.  Unfortunately, she was on treatment when we got there so we had to wait four hours before they could do the scan; so we hung till it was time for the scan.

The scan showed no brain bleed or edema.  Thank goodness!  Ryan had brought with him a copy of the last MRI we had done through Steinberg so they could compare because we were wondering if the tumor had grown.  The radiologist could not compare scans because the last MRI was thru Steinberg and the hospital uses Desert Radiology.  OH MY GOSH!!! So we got a copy of the cd so we could send via Fedex the next day.

On Wednesday I got a call from the Burzynski Clinic saying that the cd only had the MRI of the brain and was missing the upper cervical.  AHHHHHHHHH!  So I called the hospital and they sent the rest of the scan via Fedex as well.  When I spoke to the doctor in Houston they said they would love to discuss the MRI and all of our questions in the appointment we had already made with Dr. Burzynski for today at 8am.  What's another day, right!!! Hahahaha Ryan and I didn't sleep well last night.

Well, the MRI shows STABLE tumor in both the brain and upper cervical spine!!!!!!!!!!!  Hooray!

Dr. B feels that clinically Kass is still doing very well.  Her symptoms are not being caused by tumor growth which is such a relief for us.  But the fact that they dissipate is a good sign.  It's hard to pinpoint exactly what is causing her symptoms because her tumor is in such a vital part of the body.  Any swelling or shifting in different parts of the brainstem can push against a certain nerve that controls that part of the body.  Brainstem is as delicate as you can get!

At first, Dr. B felt that attacking the tumor at a high dose would break it down fast which it did at first, but then she tapered off.  So now that it has been stable he wants to lower Kassidy's dose again to 330ml on bag 1 for 2 weeks and if she does well at that dose then lower it to 250ml.  Then wait 8 weeks for an MRI.  The goal is to lower it to 160ml where she has very few side effects, a "maintenance dose".   At this dose, she would be able to rest better, function better and less stress on her body, but still maintain the tumor from growing and maybe after some time start breaking down.

He has seen that slow growing tumors like Kassidy's take longer to respond to treatment, versus an aggressive tumor that usually shows immediate response.  He feels that Kassidy's tumor is going to take a while to treat.  Not what we wanted to hear, but I am so glad he's always so frank with us.  He did mention a patient he treated for 10 years at a maintenance dose and after a couple years the tumor started to slough off and eventually it almost went away.  This was almost 25 years ago and the patient is still alive.

We know that ANP is a treatment, that has very few side effects compared to the others that are out there.  So if this is what we have to do, then that's what we will do!!!  Continue treatment!  We trust Dr. Burzynski.

Plus, we are afraid that if she does stop treatment completely the FDA would not let Kass back on since right now they are not letting any new patients on the clinical trial.  I pray that someday the FDA gets that his treatment is saving lives and that Dr. B is a genius and has found a cure for many without all the nastiness that come with chemo or radiation

Dr. B also said Kass will not need another PET scan unless she has significant tumor activity.  Last PET scan showed no activity in Kassidy's tumor so unless she start showing signs that there is activity there is no reason to put her through that test again.

All in all, the backpack is not going away anytime soon! We are hoping that lowering her dose will allow for Kass to keep her tumor from growing or even become more aggressive which sometimes these tumor can do.  That getting down to 160ml on bag 1 will allow and give her body a bit of a break and continue to do it's job without causing to much havoc.

The reality is that our journey may be a long one!   I hope and pray that God gives all us strength and means to continue this hard battle as long as we need to.  That Kassidy stays strong and motivated to continue to fight.