How is this even possible.

Thursday, June 21, 2012

We got yet another blow today-------a knock the wind out of you, wobbly kneed, need to sit down kind of blow.

We got the results from Big D's bone marrow biopsy, which was done on Tuesday (which was scheduled as part of the original plan...nothing new there).  His bone marrow originally had 1.5% cancer cells......it now has 13%.

The doctors were surprised at his CT results with the mass growth, now they are shocked, flabbergasted, stunned.  This simply DOES NOT HAPPEN when a person is on chemo and steroids. 

NOOOOOOOOOOOOOO is screaming through my head.  Not my boy.  Not some crazy, scary, abnormal, rare, unheard of cancer that is growing out of control even in the presence of toxic drugs running through his veins for days..... NOT MY BOY!!!!!! 


There are yet more questions and more options.  I will outline some of that tomorrow....

For now, Dillon is going back to the operating room for a second lymph node biopsy tomorrow.  The question is.....do we have the correct diagnosis.  This mass and the bone marrow are not at all acting like lymphoma.

Has it morphed into something else?  Was the original diagnosis just wrong?  Is this some new form of cancer that starts off looking like lymphoma and then ....something else.

UNM is part of a conglomerate of hospitals that span the globe, all working on and sharing information, protocols, outcomes, failures, everything with about 200 other world class hospitals.  This group is called the Children's Oncology Group.  Go to their site and check it out.  http://www.childrensoncologygroup.org/

The fact of the matter is that there is some doctor somewhere that has seen this and treated it successfully.......these UNM docs just have to find that doctor.  Lots of research, questioning, interviewing, studying, collaborating.  The protocols and treatments that are used at UNM are used at all 200 of the other hospitals, which include Baylor in Dallas, St. Jude, Texas Tech, MD Anderson, Cedars-Sinai, Kaiser Permanente, Cleveland Clinic, Mayo Clinic.  If you have heard of it....they are part of this group.  These doctors are going to find the answers and construct a plan to treat this sweet strong boy.

Speaking of The Pickle.  He had a FANTASTIC day.  He had a visitor that he really enjoyed, he ate a little, his pain is minimal, his spirits are high. He laughed and talked today, he was interacting, worked hard on going for a walk and washing his hair (which yes....is falling out rapidly, finally).  Tomorrow morning actually, before his surgery, we are going to shave his head.  The shedding is driving him crazy with itchiness down his back and in his eyes all day......imagine that 'after a haircut feeling' with all those little pieces of hair all over the place going on for weeks.  NO THANK YOU.  So, tomorrow when Sean and Luca get here we are gonna have a shave fest and Dillon, who actually despises haircuts, is fully and wholeheartedly looking forward to it . He has been gifted some cool head coverings, some cousins are knitting more, and he is going to have a great 'wardrobe' for his head.

Soooooo we are floored.....but we have allowed the shock and dismay and fear to run its course. We have regrouped and gathered ourselves spiritually and emotionally and we are again at the end of this day rock solid, positive, upbeat, and ready to fight this thing like no one else can.  I said to my dad today...."If there is a family who can close ranks and beat this thing with love and support for all of us....this is the family....
WE CAN DO THIS!!!!!!
WE WILL DO THIS!!!!!"

Dillon hanging out with the new Buckley IPAD

Dillon trying out one of his new head covers before tomorrow shaving event