I wish to tell you a story today. Bear with me; my feelings are very tender. Life is somewhat like a flower with its petal falling off—first the beautiful bloom and then the petals drop off until there is no more life in it.
I've had an eBay group for about 4 years now and we've all become extremely close bearing each others trials and tribulation, successes and yes, failures. One of the women in the group has a grandson, C, who has been very special to us for about a year now. He has suffered with a brain tumor since last summer. I can't even begin to tell you how many operations he has had. He lives in Montana and had to shuttle back and forth between his home and Salt Lake City for so many surgeries we can't even begin to count. We've prayed for this little boy who just turned 6 recently for a year almost constantly. He's been through so many chemotherapy treatments we've lost count on that also. He is loved much by all of us in the group.
Here is the latest from his mom to all of us. Wishing to preserve their privacy and feelings I'm only going to post the last post from his mom:
I'm not sure how to start this, and if i sit here trying to figure out the way to word things, it could take all day.......bear with me. Last Tuesday afternoon, C****** had an MRI of the brain and spine. It was a scheduled one that he missed last week, due to being in ICU at St. James. We had rescheduled for July 1st but i asked them to do it while we were in patient so it would save us a trip back to SLC. A day of waiting for results, and night of having my mind play tricks on me as i tried to sleep, a morning spent with his oncologist and a social worker in a small conference room, telling me the MRI didn't look good. She said it was tumor recurrence, basically that the medullablastoma that they took out almost a year ago is back. And its not just a confined tumor on the back of his brain stem, its surrounding his brain, and has made its way inside, and into his spine. Of course the obvious question is asked by me, "Are you sure?" Kind of a dumb question to a team of specialists who do this year after year and see it all the time, but you have to know. "Yes" is the answer. Then you move onto, "Is there any treatment?" Yes there is treatment, but its a high dose of chemo that could possible end his life. In my spirit, from the moment she told me, i knew what decision, as parents we would make. I knew we couldn't put C****** through another round of hell. His body has taken enough, and it would be selfish for us to think any differently. If he could talk and tell me what he wanted, he would say, "Mom, i hate this, i want to be out of this bed, and free of this, all of it." He has literally spent 2 1/2 months on his back, in a hospital bed. Whether it be in Montana or SLC, he has become a fixture in a hospital room. Not exactly the life of a 6year old boy.
So i cry of course, they tell me the statistics, then they leave me to think. I call B**** at work, i am very matter-of-factly about it, i just tell him how it is. We cry together and even though we had never really sat down and talked about what we'd do if it ever happens, he had the same thoughts as me. It is wrong to torture him again, to subject his tiny body to chemicals that will eventually take him anyways.
My sister showed up that afternoon, she drove from Montana to stay with me, to keep me company. She knew when she walked in there was something wrong. She was a saving grace on Tues. Wed. and Thurs. I was able to cry with her, and laugh with her. She helped take my mind off the situation, if only for moments at a time. B**** and I knew we wanted to get C****** home as soon as we could. So began the fight with our insurance company to approve a quick ride home for him because of the situation. Thanks go out to all the social workers at St. James and Primary's for all the phone calls and pushing this to happen for our family. At the last minute it was the director of oncology that said, "Send them on a life flight, we will cover it, he needs to be home." God bless that woman!
So we left Primary's Thursday at about 5:30, C****** and I on a flight, and my sister headed home in her car. The flight was short. Montana was cold. They put him on the 5th floor here, in a nice quiet room, C****** is here to rest and stay comfortable. B**** met us here with the rest of the kids. We had to be honest with them and tell it like it is. We all cried together and hugged. I was thankful we had decided to wait until i was here to tell them. G**** of course, is too young to fully comprehend everything. He just ran around the room passing out tissue to everyone. He said, "Mom, i feel some tears coming, but they just won't come out of my face."
Our family has watched C****** struggle with a lot of different things over the past year. This is not new to all of us, not sudden. Even though in a million years, i wouldn't have guessed that MRI would have looked the way it did. I saw it twice, and still second guessed their findings. You are in such shock, and denial, it just doesn't register with you. All the prayers ALL of us prayed over C****** over this past year, were not in vain. They were valuable, they were heard by the Lord, and will continue to be heard. I encourage everyone out there to please continue to lift C****** and our family up, especially at this time. It is a "win, win" situation with him. He is here now and we can believe for a miracle, or he may go on to be in the arms of our Lord, either way is a blessing for C******.
You all know, by this time, i am a positive person, i like to live my life that way, but there is reality too. Through this i won't fall away from the Lord, i will continue to draw close. I will continue to thank him and praise him, because that's what we are told to do, through good times and bad.
I have my moments, but i am trying to be as strong as i have ever been through this whole thing. C****** is comfortable, he isn't having any pain. He is peaceful, and sleeping as i type. I hate this whole thing, but i still love the Lord. As the year has passed, our priorities have changed, our expectations have changed, and again they are changing. I will continue to update, and please continue to pray.
And then this tonight from his grammy:
THIS MORNING WAS HARD AGAIN, SEE ITS NOT A TUMOR PER SAY ON HIS BRAIN--THE CANCER HAS WRAPPED IT SELF ALL AROUND THE BRAIN, SO THERE COULD BE NO SURGERY TO REMOVE ANY ONE THING. HE HARDLY HAD ANY OF THE GOOD CELLS NEEDED TO FIGHT AFTER ALL HE HAS BEEN THROUGH..
WE JUST GOT HOME, I SPENT THE NIGHT LAST NIGHT--HE IS IN A LARGE ROOM TO ACCOMMODATE ALL THE FAMILY..THEY HAVE BEEN SO GOOD TO G*** AND ALL OF US...
TODAY HE WAS VERY RIGID, VERY SHAKY AND HIS HEART RATE WAS OVER THE TOP--TOO MUCH OF THAT FOR ME..
LAST NIGHT HE WAS AWAKE AND I SAT AND HELD HIS HAND AND TALKED ABOUT ALL THE THINGS WE SHARED IN THE SHORT 6 YEARS OF HIS PRECIOUS LIFE....HE USE TO SAY, "GRAMMY, I CANT WAIT TO GET TO HEAVEN SO I WONT HAVE DIABETES ANY MORE".........AND AMEN HE WON'T...
SO, THEY HAVE PUT HIM ON MORPHINE NOW, AND HE IS RELAXED (ALONG WITH MANY OTHER DRUGS) HIS HEART RATE HAS SLOWED DOWN, AND SHE SAID HE PROBABLY WON'T OPEN HIS EYES NOW, WILL SLIP INTO A COMA AND BASICALLY JUST GO ON....AND ONTO OUR SWEET SAVIOR WHERE HE WILL BE WHOLE AND HEALTHY AND HAPPY AND WITH MANY FAMILY MEMBERS WHO WAIT FOR HIM...I AM JEALOUS THEY GET TO KISS HIS SWEET CHEEKS AND NOT ME--BUT WILLING TO SHARE TIL WE COME TOO.
PRAYER IS ALWAYS WELCOME CONNIE, AND YOU HAVE TO PERMISSION TO BLOG, YOURS IS A WONDERFUL PLACE TO BE SPOKEN OF...
OH I LOVE YOU TO, AND TRUST ME WHEN I SAY--YOU GIRLS AND YOUR PRAYERS AND YOUR LOVE HAVE HELPED SO MUCH FOR ME THROUGH ALL OF THIS.
So C****** won't be getting better. I ask all of you who are reading this to contact everyone you know who believes in prayer and to pray for this sweet child. He won't be with us much longer but his family certainly needs prayer. This is the hardest post I've ever had to write. We all loved C very much. We will miss his sweet antics.
So just like the beautiful petals that fall from the flower, this sweet child may have passed on before this is posted. It has been a terribly hard day for all of us in group because we've been there from the beginning of this with him. We all loved him and his family very much and have witnessed their trial and prayed almost every single day for him. We will miss you, C, and you will be in our hearts for a very long time.