Thursday September 1, 2011

Wow.  What happened to summer?

Jen and I have been scuffling with our emotions since our Tuesday consult that showed us amazing progress vs. the pontine brain stem glioma living in Shannon's head.  We are really pleased no doubt.  The tumor had measured around 3.8 cm in April and today is around 1.8 cm.  We saw it with our own untrained eyes. 

The Mayo Clinic radiation team really scored.  I mean, they told us this kind of a response was possible - could happen - but many times there is no stopping a high grade glioma.  Dr. Laack was thrilled...considered it best case scenario.

Dr. Nadia Laack designed the radiation attack plan, carried out by a physicist and a dosemetrist (our friend Janelle Miller, Hockey Mom) and then a team of radiation techs that all made Shannon feel like she was their only patient.  Pros.  All of em.

But that phase of our fight ended in June.  The radiation still might be having a slight effect today.  But for the most part the radiation was the big dog in our fight. 

Closure.  We said goodbye to Dr. Laack.  She is off on maternity leave any day now.

Shannon has received the maximum amount of radiation with minimal collateral damage.  We are so fortunate.  Many people have asked us about proton beam therapy as a treatment option.  The major benefit of proton therapy is that it limits collateral damage.  Our photon beams carried just as much punch as Shannon could have received had  proton therapy been used.

Delivering photon beams to the pons region of Shannon's brain and around the brain stem is quite risky - it's possible she could have lost her taste buds, use of her tongue, her eyelids or some other function that could have altered her lifestyle tremendously.   The photon beam treatment we underwent was administered with such precision that Shannon has had no cognitive side effects to speak of.  Even the hair loss was limited.  So we are extremely grateful for that.

But we are not turning back flips.  I don't think thrilled is a word Jen and I can throw out there to describe our reaction to the MRI.  We are really pleased.  But the closure on the radiation phase of our treatment forced us to look ahead and ask what's next?  That remains one of the great unknowns.

Shannon will keep taking chemo - 5 day cycles every 28 days until April.  Temozolomide or Temodar is really our last line of defense.  Our team has prescribed MRI's every three months now to check out the tumor.  That is good news in itself - an indication that perhaps we are dealing with a lower grade tumor.  If you recall, we opted to pass on a biopsy that would define the biology of the tumor.  We agreed the biopsy was too risky.

So we will keep living in today and work really hard to stay there.  That's really a tough way to live.

The same day we went to see the MRI we had a family meeting with the 8th grade counselor and some key people on the team at Willow Creek Middle School.  They wanted to lay out a plan for the school year for Shannon.  The counselor emailed Shannon's teachers to offer them the chance to sit in.  Every one of them showed up.  It was the teachers second day back at work to prepare for the new year and they all gave us their time and attention and - most important - their assurance that Shannon is in good hands.