i'm just going to start over

It has been so long since i have posted anything I'm just going to start over

This is Stephen , also known as Skylo , he was diagnosed with  retinalblastoma , that is cancer of the eyes ,at 5 days old  he has it in both eyes , he also was born with congenital cataracts , pretty rotten deal to have both conditions
it was so devasting to find out that such a tiny baby has cancer , it was one of the most horrible days of my life , Nina is Skylos mom , Stephen is Skylos dad , they were both basket cases , it broke my heart to see my poor young daughter so upset , and there was nothing i could do to  help ease this kind of pain , it was one emotionally draining day , first we met with the eye doctor that made the actual diagnosis , it took for ever waiting to be called back into the exam room , then waiting again for his eyes to dialate , of course the waiting room was packed , i wanted to pull my hair out grr ,
after we once saw the Dr things really started to move fast , it was a blurr ,first we had to go down to radiology for an MRI to see how far the cancer had gone , and if it was close to his optic nerves ,that is a bad place because the optic nerve is only a tiny bit away from the brain
after the MRI we went to a different floor to the oncology clinic to meet with the oncologists to find out the plan and what stage his cancer was , we sat in that waiting room I  swear another couple hours , while we sat there i saw so many sad little ones , they looked so sick and listening to the conversations between their parents really scared us to death , i felt so bad for nina , she kept crying uncontrollably , it was horrible , i have to admit that i shed lots of tears myself , one thing that really helped me at least was when this volunteer brought this big beautiful service dog in , her name was maggie , she was there to comfort the kids in the clinic , he asked me if I wanted to pet her and i just melted into her , she just sat there and let me hug her as i cryed ,I wish humans were like dogs , they always know when you need comfort and dont ask anything in return
anyway we finally got called into an extremly tiny exam room and we waited in there who knows how long , finally two docs came in , they gave the baby a pretty thural exam then it was time to have the tough questions answered , first they said the tumors were not anywhere near his optic nerves , great news , now to tell us what the treatment plan will be for Skylo , they said all of the following things kind of like a shopping list or a honey do list ,they inform us that in the morning he will be put to sleep and Dr hoffman ( the opthamologist )will do another more thural exam and also an ultrasound of the eyes to see if he has anything in the back of his eyes , ok freaking out here , he is a newborn , at the same time they will put a broviac port ( an IV that is placed near the heart in the  main artery leading to his heart )it has a spot that exits his chest to give medications like the chemo and also to be able to take blood without having to keep sticking him , also they are are going to take some bone marrow to see if he has cancer any place else , wow is all i can say ,    first he needs six months of chemotherapy ,every 28 days for two days at a time , oh yeah also in informs the kids that they really need to consider moving to Salt lake so they can be closer to the hospital , wonderful just move on up here , huh yeah right doc , things are not that easy , we finally got done and I had to leave because my husband had to be to work in a few hours so Stephen called his mom to come down , it was horrible to have to leave nina there , so sad , so tired and upset , i felt horrible but i did not have any choice , we did not even exspect all of this , it was like somebody kicked our legs out from underneath us , i cryed the entire 3 hours ride home , i just could not imagine pumping a newborn baby with poisen , will he be strong enough to get through something so harsh , i was definetly a deer caught in the headlights that day , that feeling lasted at least a few weeks to ,


The next morning around 6 Skylo was taken into the OR for all of his procedures , I think he was in there for maybe an hour or so , the exam showed that there was no cancer in the back of his eye and the bone marrow test showed no cancer anyplace else but his eyes , very good news , he was admitted to primary Childrens  hospital after he was awake , that was a wed and his first chemo would be on friday , and the roller coaster ride begins