I chose the title to this update for many reasons. First Nov. 4th marks two years since Jacksons diagnoses of cancer. Nov. 3rd we went to the doctor again for what we thought was constipation,(this had been going on for two week's) his doctor examined him again, felt the lump, said his spleen felt enlarged, if only it was gonna be that easy. We couldn't get in for a ultra sound till the next morning so we went home got a good night's sleep, little did I know that would be the last good night's sleep I would ever have. Woke up early the 4th to get him to the hospital for his test, first we had to check a job site of mine and he had blast climbing and playing on the dirt mound's, so much fun we had to stop at K-mart by my moms house to buy some clothes!!! I'm so glad now I let him play in that dirt, any other time I would have kept him strapped to the car. We got to the hospital for the test and I started taking pictures of him with my cell phone, just playing around and I picked him up to put him on the chair in the waiting room and he smacked the crap out of me in the face and no, he he's never done that so I sat him on the chair and told him he was in time out.
We got back to the room did the ultra sound and was told to go to waiting room. OH how oblivious I was !!! The phone rang in the room and it was his primary doctor, oh godddddd, go to Fairfax we need to ran some more tests. I don't think he hinted to anything of course that day is blank for me maybe his dad remembers more because I sure as Hell don't, only bit's and pieces. We got to Fairfax and checked in, don't remember how we got back there. All I know is we were there Oct. 22nd and we're told he was fine even with us telling the ER doctor his belly looked bigger. (Quack) Needless to say I read the new ER doctor the riot act, by then I think my mom and dad were there too. Did the CT and bam, next thing I knew we were being rolled up to the 4th floor, all I remember is thinking to myself why the HELL are we going to the HEM/ONC floor. Hahhh, still oblivious, don't remember being told all this, oh the tricks the mind can play on us!!! Then D day came, surgery Nov. 5th, he was so scared, I laid on the bed with him as they rolled us down the hall he buried his little head in my chest, all the while the child life lady was telling him about getting a new port to put medicine in, WHAT, when was that decided. I felt like everyone knew what was going on but me, looking back I was in shock. While waiting my dear and best friend in the whole world showed up to sit with us,(didn't even know she knew) even brought me dental floss she knows I hate stuff on or in between my teeth and of course loads of candy she knew I was gonna need it!!! Friend's, I can honestly say I only have one that truly gets me and that's her, Thank you, ANITA. I love you. Jack, his daddy and my mom and dad were there too, I don't think they would have had it any other way, my mom and dad lived at the hospital with me that first week, couldn't have done it without, any of them. The doctor came out and told us it looked like Wilms, what the hell is Wilms? I've been trying to figure this out the whole time. We got back up to the room and all he did was sleep by then his room resembled a toy store!!! In the middle of the night he pulled his NG tube out, the tube that was draining his stomach to give his gut the rest it needed to heal, I remember refusing to let the nurse put it back in, until she called the doctor and made sure he needed it. Well needless to say he needed it. His incision was only 4 or 5 inch's across the top of his belly button then. I know, only 4 or 5 inches now it's all the way across his tummy. So that's how it all started. The strange thing about all of this is I knew in the back of my head all a long something seriously was wrong with my baby even at birth that's another story in it's self, here's the brief version. Jackson was born not breathing, diagnosed with Autosomal Recessive Polycystic Kidney Disease. (never had it, mis-diagnosed) I almost lost him while carrying him at two month's, now talk about a fighter he's almost died on us three time's. That's a tough cookie. God has amazing plans for this little man, I don't know what they are yet, I do know he's touched a lot of lives and mine is changed forever. Everything he does is simply amazing!!
Funny story from the beginning of this this nightmare, we were walking down the hall trying to kill time before his first surgery and as we were walking down past the nurses station he yelled at them, "YOU FORGOT TO FEED ME THIS MORNING", he couldn't eat before surgery and was hating life. Now we're worried about him gaining to much weight, he's on 1 percent milk and weighs 69 pounds. He was 42 in Feb. 07 after his tumor and kidney removal surgery's, wow big difference and loving it!!! Hope everyone had a safe and happy Halloween. We only made it around the block once, he still made out like a bandit.
Love
Cheri
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