Since I reported last Keegan has now started army crawling again which I believe is a good thing in light of the SPINAL surgery he just had a week and a half ago!! I think at this point he has just been through so much he bounces back that much quicker! He is a tough little fighter and I pray to the dear lord that he keeps on fighting the good fight.
On another note, I got quite frustrated with MSKCC and the lack of communication between them and Riley last week. I figured by now I would at least have an appointment and flight booked but still w.a.i.t.i.n.g and like a fellow medullo mom wrote me in an email the other day " But just say you are a crazy neurotic
cancer momma... (well all of us who are going through this are crazy and neurotic so it goes without saying).. and you want to know what you can do on your end to try and make this transition between institutions. This is an urgent matter..."
Well it doesn't help that Dr. Shih is out on vacay (which they should not be able to do by the way -just kidding!!!) But Jayne has kept in contact with me daily via email or calls and updates me on the status as to what is going on. As of the end of last week, Dr. Pradhan had talked with the docs at MSK and started to get things in order. Jayne started working on all the paperwork they would need on Kee as well as requesting the slides from pathology of both of his tumors, which I guess tend to take a little time. Jayne told me that Dr. K told Dr. Pradhan (you still with me here?) that she will try to call my this week to give me a heads up about NYC, so I am waiting very impatiently for that call. (My phone is with me EVERYWHERE I go so I don't miss that call!)
Tuesday Jayne is sending out all the paperwork overnight to NYC from Riley, Dr. Shih will be back on Wednesday and hopefully by the end of this coming week pathology will have our slides together and on the way to NYC.
Whew.....are you overwhelmed because good lord that is alot......We are doing okay for those of you wondering. Ry and I have talks at night where the darkness is my friend as I silently let tears fall for the what ifs. This is scary and emotional, I won't like. I read some research on a reputable website that once medullo recurred it is usually deadly, I pray that is not our case, Keegan has not even had a chance to really live his life at all!!!
With that said, he did have his first to Wal-Mart the other day. I diligently wiped down his cart with antibacterial stuff and put him in the buggy, he was happy as a lark! We traveled around the store collecting our groceries and other items and every time he saw people he just started to giggle-it was great-I have never seen a kid more excited about being out in public, it really made me feel like a normal momma for once.
So that is our updated, I would like to express my deepest sympathy and condolences to the families of Addison Jo who passed away from complications of neuroblastoma on May 27 at Kosair Hospital and to the Family of Katie Lynch a Junior at Roncalli in Indy who passed away from complications involving a stem cell transplant for her leukemia. Please include both families in your prayers this evening as they are facing the most terrible loss of all.
On my last NOTE: Crystal Biehl is still collecting sponsors/items for the online auction that will start June 1st for our benefit. If you are a consultant for any company (scentsy, thirty-one, tupperware, pampered chef, avon, Mary K, etc) or if you happen to be crafty and make things or have an etsy shop I am sure she would love to include you if you are willing to donate!
Thanks & Much Love!