happy baby

I"m sorry I have not updated for a little while . honestly there has not really been a whole lot going on with the little man except that he has really gained his strength back along with gaining about two pounds lol.Nina and Skylo spent a week with me and it is so wonderful seeing how well he is doing . he didn't s eem to have any sideeffects from his last chemo . he is trying so hard to  walk . he is so close .he just needs the courage to let go .he is eating like a little piggy and saying so many things now . he calls me ma  . grandma is a bit tough lol .we had the best time hanging out together . it makes me feel so much better knowing he is so strong when he does finally have his radiation . still no word on when that will be

so far so good

well it has been almost three days since Skylo's chemo , as of right now he seems to be doing pretty well , no fever as of yet , his tummy isn't acting up , at this point we are on edge because at any moment he could go downhill , when his counts drop he gets very sick very fast , last night Nina was worried because he was really tired and did not want to eat , hopefully it is just a toddler thing , still no word on when he will have his MRI , hopefully soon , its time to get this nightmare over with

 mom took this picture on Sunday his last day of chemo , i sure hope that sweet smile sticks around

more chemo

sorry for not updating for a few days , I have kind of been under the weather , OK here is the scoop on the little man , he went and saw the oncologist on Wednesday , he feels that more chemo until Sunday is in skylos best interest so as not to get the tumors active again until radiation is done , he will have an MRI sometime , i love the oncology department but they do not like to give straight answers , I'm assuming it will be done within the next few weeks , if the MRI is good then they will get radiation going , this is ridiculous , I just wish they could get it going now , i know they have their reasons , its just so hard to watch the baby have more chemo , so far he is doing OK , but then again this will only be the third day , he seems to get really sick a few days afterwards so we shall see

momma says he slept right through chemo yesterday

exam day

Skylo had his eye exam today and we got some positive news for a change , there has been no change to some good change for his tumors on both eyes , he has an appointment tomorrow to talk to the oncologist to talk about getting the radiation started , its kind of sad that we want him to have radiation ,but if that means we can stop this horrible disease and stop its horrible treatments , then it is worth it , he may still need chemo this week since it might take a while to get everything set up for his radiation but maybe not , we will just have to see what the doc has to say tomorrow , as of right now Skylo has no fever or any signs of infection , he most likely still has CDIF though since he is still having lots of tummy troubles , phew , I feel so much better , Grammy loves you Sweet pea

exam had to be rescheduled

no exam today , sadly this means at least one more session of chemo , I am just scared that history will repeat itself and he will get sick a few days after his chemo is done like he has the last few times ,please no infections and no transfusions , I just pray that they reschedule sooner rather than later , every time he has chemo he is at such risk for everything

things sure can change

A year ago the idea of radiation was the last thing to do , in fact the Dr said at the first exam that it is the last thing we want to do and is the last resort , now we are hoping for the okay to start radiation so there will be no more chemo that Skylo must go through , it is such a bag of mixed feelings here , there is so much hope that the radiation will kill the tumors and make chemo not necessary anymore , on the other hand radiation can destroy so much tissue and bone ,it could also make his retinas detach ,and after all  of what he has gone through , he still could lose his eyes , wow it is overwhelming to to think of all of that , the risks are low for a lot of the side effects but it seems like for some reason the sweet lil man gets the other percent , this almost feels like there are two paths in front of him and a roulette wheel spinning to decide which one to take , his exam is on Thursday to decide whats next , I'm glad that I'm not the poor Dr's making this decision ,no matter what happens I know that Nina and Stephen will be strong and do what they have to do for their son , they are amazingly strong , I cant believe in a few short weeks my daughter will turn 20 years old , I am so proud of her for not completely falling apart , if Skylo ends up with eyes or not , he will go so far in life , he has the strength of a soldier , and has touched so many lives in his young life , I love you baby boy    

Giving up is simply not an option

lately I have seen so many blogs and facebook pages for kids with cancer and it got me to thinking about things , i think back to when Skylo was going through his first round of chemo , so many people asked all of the time how he is doing and showing such caring and concern for our little sweetpea , I cant even describe how much it meant to myself and skylos mom and dad to know we were not the only ones out there pulling for him , it gave me personally so much comfort
things are different now , since we found out that his cancer is back nobody hardly ever even mentions him , let alone asks how he is doing ,sadly not even my own family does anymore ,  it makes me feel like everyone has given up on him , I know that this has been going on for over a year now , and there could potentially be many more to come , but please don't give up on my little man , maybe that's why there are so many pages for cancer kids , to keep people asking , I don't care if I have a million likes for skylo , or have not had a news story done for him or big glorious fundraisers ,the god that I feel in my heart does not give miracles and mercy for how popular the baby is , a handful of people that know him and our family that keeps prayers and positive thoughts going are worth so much more than a million people who have no idea who he is or what he has had to endure , I'm just a simple plain ole grandma who loves her grand babies and would do anything in this world to take pain away from any one of them ,it frustrates me to no end that I cant do more , i hardly ever get to see  Skylo since they live in murray now , when i went down there a few weeks ago he didn't even remember me , he sure knows my voice though because he hears me everyday,sometimes the what ifs keep me awake at night or make me wake up in a cold sweat , some days it is a real struggle for me not to break down in tears for everything , I don't mean to be such a cry baby , but I really cant help it , I want everyone to know that I do appreciate all of you , just please keep praying and thinking good thoughts for Skylo , he needs that to give his little body the strength to keep fighting his battle