williambeaumont

Beaumont First things first .... the night before surgery we were a little worried and not wanting to raise red flags to stop Nickys tummy surgery because the week before his ANC was 1000 and he was sick with that bug he gave Christian and I, and what a bug that was! So he seemed ok and I took him for his scheduled appointment at Beaumont in Royal Oak at 7:00am and surgery scheduled for 8:30am .... so I didn't have my paperwork to tell me exactly where to go and there are many buildings on campus at Beaumont Hospital, I recalled the nurse telling me to park in the South Tower and to go to the 2nd floor. So I parked in the South tower, never parked there before - it's always the Rose Cancer Center. So as I walked into the main floor of a hospital that echoed memories of Nickys surgery 18 months ago - I just jumped on the elevator with anxiety and hit 2.

As I walked off the 2nd floor the walls closed in on me as I realized I just walked into OR Surgical area, the first spot I saw to my left was where I sat at 4:00am on May 22, 2010 while Nicky underwent a temp drain placed in his head to relieve the pressure. I tried to breath ... then I looked to the right to where I walked off the elevator and The Strange Family met me with food and hugs and then I was surrounded by family, friends and Pastor Steve. I immediately remembered a man in blood stained scrubs walking out towards us 4 hours into the surgery and I thought my son was dead .... we was sent to update us that the surgery was going as planned - after that visual, this is when I passed out for the finally two hours before Dr. Holly Gilmer-Hill walked out and I jumped up in fear and hope and ran to her .... the women at the desk saw my eyes filled with tears and she asked if I was ok. Visibly I was not ok, unprepared to walk into this area of a place filled with anxiety and pain. I quickly said," No I am not ok, please tell me this is not where I wait for small procedures??" The woman said no and she was kind enough to walk me to where I was suppose to be and checked me in to make sure I was ok. Nick would have came with me but I guess I didn't realize the massive effect of walking into the actual areas where this nightmare begin would haunt me so much and he showed up soon after.

So we got into the pre-op area and we waited and waited and finally at 9am, I said when is this surgery ???.... They told me we were bumped and shocked no one had called - surgery is scheduled at 10:30am and emergency took our spot. I was fine with that, just wish they told me not to sit there from 7 to 10.... then you realize how spoiled you are at St Jude where they let your child be sedated in the comfort of your arms. I am so use to this and I will not let him be sedated without being twlighted without me. It was tough, but then Dr.Han walked in and again the room closed in on me as he was the first person to cradle Nicky in the OR at 4am on May 22,2010 and place IVs in his tiny 8 month old body. He knew I was not letting him touch my boy and yet I was still comforted with him because we was familiar.  He had no problem with supporting my requests and that I requested Versed ( this is a drug that erases your memory and it also is a heavy sedative. ) He allowed my request.  He promised me once Nicky was gassed no more than two tries to poke him and that was it - port needle was on the bed that I brought. He was kind enough to agree and the procedure went smooth. His recovery was a little rough day one, but day two he was moving around much better. I recall the nurse in recovery saying this is just another step towards being done. Boy I pray that is true and I pray that the last surgery he needs in his life is his port removed period. He sounded coupe like for 3 days so I was pretty upset when the nurse called and I asked did you incubate him? She said yes and I said half or whole - she said whole this is the size of the tube that goes into the airway for breathing ... they NEVER told me he was being given anything but gas so I was not happy with them ..... either way Dr. Morden did a great job and the scar is already fading and Nickys healing.

So enough about that .... all is well, Nicky is well ... we are relaxing for a brief moment .... It has been a crazy ride since then ..... Aaron Gray (same dx as our Nicky)  passed away and our hearts are in pain .... then Flo passed away from Ovarian Cancer, then a few days later Alan Goldman passed away from Pancreatic Cancer and then a few days later my great Uncle Hank passed away. Much sadness while we are trying to be grateful for today ....Please pray for these families.

Update on my kids we follow ... Reese C., tumors have shrunk and stable, she is not part of SJYC07 protocol but she is part of our Jude family. Back to our protocol -  Avery C. Tumors have shrunk!!!  Hallie C. is NED, Angel C. NED, Haley H. NED,  Ashlan B.  is possibly stable with a stubborn spot so PRAY, Christian S. NED, Luca P. STABLE ... pray for NED, Bella M. STABLE .. pray for NED! Now the kicker Ehrren G. another tumor has presented and not in a position for operation .... pray for radiation to cure his body ...Aaron B. scans this upcoming week ... pray pray pray .... new kids walking in there daily and Willa Rose has her second surgery Jan 9, 2012. ohhhh... Anna Rose in NY ... she is STABLE pray for cure

And FYI it's not HAPPY HOLIDAYS ... its Christmas .... so MERRY CHRISTMAS and thank Jesus for his sacrifice for us ....PRAY FOR CURES IN 2012 .... Nicky and all of us did a photo shoot in the next few days I will post some of the photos for you all to see! God Bless you all ....

Ohhhhh and I keep forgetting to post our newest family member that came into lives on November 5, 2011 ... meet Bentley - he's made it through George Boot Camp so he's staying and doing very very well ....he's 2 1/2 pounds of fun!

He's keeping Nicky busy - he likes to chase him and Haley Blu (our other pup she's 3) has a partner in crime now!!!

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