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Julian lost his battle today... RIP baby boy...
- Jul 4, 2009 at 12:10 AM
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- Comments (116) Total Views (2851) Everyone can see this journal post.
I made a post about this a few months back. Julian had a PonTine Glioma. Which is an inoperable brainstem tumor. He started his battle back in November. He was only 5 then. Julian has a twin sister Briana. She so far so good has nothing. Thank you Lord. Julian recieved treatment at St. Jude for over 11 weeks. When Julian came home, he was able to go back to school and do all the normal things kids do. We went to the zoo, played ball, and loved on him as much as we could, as we knew, this wouldnt last long. No child that has had the kind of tumor JJ had ever lived past 18 months. About 3 months after returning home from St Jude, JJ started to have symptoms again. He was dizzy, the right side of his body wouldnt work. It was starting all over again. He was going to Disney world in April for his Make A Wish trip and immediatly after that he was to go back to St Jude for another round of treatment. Well, after they arrived, his mom found out that the tumor had grown 3 x's the size it was when we first found out. And the doctors said those dreaded words... There is nothing more we can do......
So, JJ came home and went under Hospice. He continued on Chemo and massive steroids to help with the symptoms, but it wasnt stopping the tumor from growing. June 6th we had a fundraiser for him. Which raised aobut $3,000 for his funeral and burial.
3 weeks ago things got really bad. JJ went back for another MRI. The news was not good. JJ had a new lesion and the tumor was splitting and it was stopping the natural flow of fluid draining off the brain to the spin. He also had water on the brain. The doctors said 2 weeks MAX. Wensday, they wanted to admit him into inpatient hospice. When he arrived, Hospice was not helpful. His mother had to pick him up out if the transport bed and put him in the hospital bed ALONE. SHe then asked for food for JJ and the nurse had the balls to tell her that McDonalds was up the street, knowing that they came on hospice transpertation. Also knowing the JJ could not chew anymore. He was on pureed foods. His mother then said screw this. My son is more comfortable at home, these people at hospice are sitting around speaking of carpet in there house and not once coming to check on JJ. She checked him out. Thursday night JJ was very fiesty. On edge and angry. At 11 pm that night JJ went to sleep and fell in to a coma. At 3:15 today Julian Knight lost his long and painful battle with brain cancer.. I know I shouldnt be sad. I know I shouldnt cry. But, I miss him. He wasnt even my child and my emotions are so sad, that I cant even eat. Sleep, think. I know that he is in a better place. I know he has no more pain. He is no longer suffering. But damn it. Why take a 6 year old little INNOCENT boy. We love him so much.
JJ was the sweetest little boy. Even thru all the chemo and needles he never once complained. He was a tough little trooper. To see him laying there today and to here him moan in pain and yell out 5 minutes before his passing will be something that I never EVER forget...
My life is forever changed. The way I look at things, complain aobut things. Want a break from my children. My life will never be the same. That little boy showed so many people so many things. But most of all he brought people that never knew eachother or didnt get along together. He brought a family that was broken back together. He tought me that life is to precious to take things for granted.
Julian, I love you.. I miss you so much. Just to see your beautiful smile one more time.. Oh I would give so much. You showed your mommy that you are so strong.. And a fighter!! We love you.. And you are with the angels now. No more pain. No more struggling. Jesus put his warm loving hands around you and made all the pain go away!! We love you!
Julian at his baptism in May.
Julian and his twin sister Briana. Right after he came back from St Jude the first time.
Julian about 4 months before his mom found out about the tumor. Julian is on the left.
Julian and his dad at the fundraiser June 6th.
Julian and his mom and dad june 6th just 29 days later he would go to be with the /lord!
Please vote this as popular. SO I can forward all the kind words to his mom who really needs all the support she can get!!!
RIP Baby Boy
We love you!!!
Tags: cancer, death, little boy, love, miss you
Comments:
so sorry for their loss they are in my thoughts and prayers
My deepest condolensces. That post made me cry. The story is so sad. he was such a cute little boy and so happy.
I am so sorry for your loss. I hope that the family finds a way to get past this tragedy and honor his memory. I especially feel for his poor twin sister- that has to be the worst. I hear that twins have a bond from the womb and I hope she doesn't feel that past of her is missing now. Yoou are all in my thoughts!!
What would we do woithout our faith that we will all be together again someday? I'm so sorry for the loss and the unimaginable grief his family and you must be feeling...
My Prayers go out to this family. I am in the midst of a family situation where my life has had to take a turn. I am Blessed in that I a m able to do what the Lord has called me to do. To HIM be all the Glory!!! I am Praying for this family that God continues to strengthen them through their immeasurable loss. God can do ALL things; just continue on in Faith!
Rev. Tonya
Thoughts and prayers sent out to his family and friends, how awful to see a child suffer. Thank God he's no longer suffering.
I never had the pleasure of meeting Julian but I have tears streaming down my face right now. Such a precious little boy. My heart truly goes out to Julian's mom. I wish I could say something to comfort you but nothing anyone can say will lessen your pain. Have peace knowing that you loved him and were an excellent , caring mother and that you did everything you could do. Always remember his smile.
What a beautiful child, and such an inspiration. Prayers being said now and in the days ahead for comfort and strength. Celebrate his life always!
From his story I can see the world lost a special little boy. I pray that his family has the strenght to remember the wonder times they had with Julian and put the not so good times away so they can start to heal. The Lord has a very special angle with him now, may He continue to watch over Julian and his family.
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I'm so osrry for your loss. You and his family are in my thoughts and prayers.