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Mikey Forever 4 6/14/04-8/19/08 Michael, at age 3, was diagnosed with a very rare brainstem PNET (primitive neuroectodermal tumor), malignant grade 4 cancer that spread to his spine. He was a beautiful, happy, smart, strong and brave gift from God, with a lot of fight in his soul and a contagious smile. As his story will surely touch your heart, we hope God will too!! Michael's Song of Love
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not sure what is going on but everytime I post this entry something different is deleted...trying again.... wanted to say Happy New Year to All on this Feast of the Epiphany! And a Happy Birthday to my Grammie in Heaven. I can still hear her saying, "There, There, my little Karen Annie, everything will be all right" We enjoyed the holidays as much as we were able. Of course there was an enormous hole in our family, and we felt it quite deeply, but we are so much better able to appreciate all that we have to be thankful for. It seems as though there is always Joy to counter our sorrow and that is truly such a beautiful gift. We stayed busy with preparations and all the kid's activities. Danielle got to play Mary in her 3rd grade Mass and Karrina was Mary in the St. Margaret's Christmas show. Thanks St. Margaret's! I love being surrounded by Mary :) For Christmas we went to my Mom's and celebrated her 1st Christmas in her new house here in Syracuse. She moved to the area in August and I'd say we officially 'broke her in' :) We headed out of town the day after Christmas and landed on the Underhill doorstep where we visited with Bill's sister and her family for several days. Bill's brother and his family also joined us, and as always there was plenty of food, drink and merriment surrounding our group of 20 :) Andrew Pullano and Eva Underhill share a birthday on December 27th so we celebrated a fun "Dora and Diego" party at a "bouncy place" as the kids say. The weather was great and we even squeezed in a quick trip to Plymouth to check out the beach. I've put new pictures here.
This new Welcome picture was taken a year ago. Monday Jan. 7, 2008 we went to Boston Children's for Pre-op testing for surgery the following week. Mike endured the usual battery of tests, blood draw and unending questions. There was nothing really unusual to report - occasional vomiting and the fact that he couldn't get comfortable at bed time - but I was really hoping that something would raise a red flag with the nurse or the neurosurgeon. I just had a gut feeling that something was off as he hadn't been acting quite 'right' all week. By Wednesday that week I emailed his surgeon to report that he was acting sick and vomiting in the mornings and her reply came back assuring me that we didn't need to worry unless it became persistent and uncontrolled. By Friday he was sleeping most of the day. On Saturday a call to Dr. Hellems to come over and check him out, but for the entire hour that she was here Mike was up and running around and looking completely normal, go figure??? On Sunday morning we decided to leave A.S.A.P. for Boston because he was hardly responsive, just wanting to sleep. As those miles ticked by fear was digging deep because we knew something was very wrong. We spent the trip calling the hospital and the neurosurgeons on call and trying to rouse Michael now and then to make sure he was still okay. We arrived at the ER and were in the waiting room for only a minute when that "persistent and uncontrolled" vomiting started. I remember feeling intense relief that we were there in such capable hands. We had every hope in the world that they would fix everything as they originally told us. Back in December they were so sure they could just go in and pluck out that walnut sized nuisance that was screwing up his eye. They took him immediately back for a CT scan and shortly after that were operating to relieve the pressure in his head. Why didn't they assume the worst at pre-op and scan him then? Why didn't I insist? Why were they so sure of the diagnosis? Why did they have to be so wrong??? These, and so many others, are questions that could haunt me if I let them. We prayed and prayed. We asked God to take care of it all. We asked Mary, our beautiful Mother of Mercy to intercede, along with our guardian angels and many other intercessors. It seems that human error should have been taken right out of the equation. Why did Michael's journey take the path that it did.....We can ask the why's forever because we know how our prayers were not answered. What we can never truly measure in this lifetime is all the ways our prayers WERE answered. Perhaps we would've gone straight to the hotel in Boston knowing he'd be seen early in the morning and that could have been tragic. Had we done surgery back in early December we wouldn't have had the memories of our last christmas together, and I have no doubt that the end result would have been the same. There really is so much to be thankful for -the results of so many answered prayers!
We are looking forward to a wonderful new Year ahead, filled with many new Blessings. Our calendar is already filling up as tends to happen in this big family. Some of the upcoming highlights include, always, birthdays. Anna will turn 14 on Jan. 27th and Nichole will turn 13 on Feb. 15th. We will be blessed with not one, but two teenagers in our household.... Nichole is working hard toward earning her 2nd degree black belt at the end of January; a lot of pressure to make that run time (2 miles under 16 minutes)! Of course Laura's 1st birthday is Feb. 7th -already!. Again that difficult mix of sadness and joy as we remember how special Mikey and Laura's first meeting was. I wish so much that she were going to grow up and know her big brother. I'm thankful that we can tell her how very special she was to him. She brought a smile to his face without fail! She was his joy no matter how lousy he was feeling. March 6, Danielle will turn 9. In April, one of my best high school friends, Kristen, will be running the Boston Marathon in Mikey's honor to benefit Boston Children's hospital! I had high ambitions of training to run some of it with her but I've decided one runner in the family is enough for now :) Mikey will surely help her feet to fly! If you'd be interested in sponsoring Kristen's run the link is here. If you already have - THANK YOU!
In May, Karrina will make her first Holy Communion. And I mentioned a little while back that we were making and selling Mikey's favorite treats - pretzel candies - to benefit his scholarship fund. The Michael Julian Pullano Scholarship fund to benefit students at St. Margaret's School is up and running. Check the photos for our logo design. We have been wonderfully successful with fundraising so far and thank you so much for your generosity if you've given to this cause. We will likely be awarding two scholarships in our first year! They will be given in May to students demonstrating Christian merit as well as need. It feels so wonderful to do things in Michael's name,honor and memory. We have so much Love for a cherished little boy who isn't here to receive it and the need to give that love is overwhelming at times.
We thank you all for your continued prayers and support of our family and wish you wonderful Blessings this year! Love Karen
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