It is with a very sad and heavy heart that I write this.
Our little angel, was lifted up to be one of God's angels Sunday afternoon at 5:30 pm. His grandmas and all of his aunts and uncles spent the day at the house with us we all took turns cuddling and holding him and he passed very peacefully and gently surrounded by all of his family who loved him so very much.
Jon and I knew he was getting close to the end of his journey this past week as he had lost more function in his left arm and, was just tired and worn out with less smiles. Friday afternoon his home instructor , Mrs. Dunnigan came to the house to give him his lesson she was always amazed at how sharp he was with his work. His favorite, nurse Stacey came and drew blood and changed his picc line dressing and had a nice visit with him. Jon managed to feed himself lunch but by Fri. evening he had no appetite and could no longer move his hand and arm. This really seemed to crush his spirit as it was the last thing he could do for himself. He was a sharp little mind trapped in a body that would not move. Friday night he was restless and barely slept at all and had no appetite. On Saturday he ate nothing all he wanted was drinks, we visited grandma at the farm and hung out with Aunt Carrie and Aunt Julie at grandma's, he was just worn out his spirit seemed to be gone. Again Saturday night he did not sleep, he was anxious and could not settle enough to get some rest. On Sunday morning I got him up and moved into the hospital bed in our living room he was very thirsty but could no longer pull the liquid up in a straw so I let him sip drinks from a sippy cup. When he looked at me his eyes would flutter up and back and he was so anxious. I called nurse Stacey from Essential Care and she came right out to see him so she could give his doctor a good picutre of how he was doing . Stacey knew something was up when she walked in the door and said her usual "hey handsome" and got no smile or response. He asked to go to his room to lay in his own bed which he had not done in months as he slept with us every night. We took him back to his bed and got him all settled in and comfy and after conferring with his doctor it was decided to give Jon oxygen and Ativan to help him settle and be less anxious. Once he was given the Ativan he was much more relaxed and peaceful. All of the family and some close friends were called and we all took turns cuddling, talking and holding him he passed a few hours later very gently and peacefully.
We are so grateful that he was comfortable and in no pain and all of his dearest people were able to be with him. Though his life was short he brought so many people so much joy and laughter he was such a special kid . From the day he was born he was a people person,that connected with everybody he met and made a friend everywhere he went. He will be deeply missed by so many.
We will have more details on arrangements for Jon, he was transported to CHOB to have his tumor removed and donated to the NIH for a study being done on DIPG tumors, by Dr. Kathy Warren .
We will let you all know as soon as possible when his services will be.
Thank you all for holding us up through this battle and all of your kind words and prayers.
Thank you to nurse Stacey and the whole Essential Care crew for being such a great support, you are truly special people and I don't know how you do what you do.