Monday, November 17, 2008

Our Angel

Hi All,

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.

With love,

Anne

Wednesday, November 5, 2008

Halloween Pics

Hi Again Everyone,

This is just a quick post of some Halloween Pics of the kids in their costumes for all of you to enjoy, so......enjoy! There are 9 pictures here. I was having difficulty with the blog while trying to post them so if you don't see all of them click on a pic and see if the others pop up.

Jon



Jon Jon at the Reimers' house debuting his
Thomas Costume.


Jon Jon with his Kindergarten teachers from
last year, Mrs. Kulikowski and Miss Marcia.

Jon Jon and his cousin Connor playing.


Jon Jon sitting at his train table and a very
small portion of his wooden Thomas the Trains
and buildings.


Daddy, Claire and Jon Jon marching in the school
Halloween Parade.


Jon Jon in his Thomas Costume.


Jamie(hidden), John, and Jake playing before
we went out tricks or treating.


Claire with Jessica, John and Emma Botham.


Our Halloween Decorations.

Monday, November 3, 2008

Halloween

Hi All,

We had a busy week celebrating Halloween . Sunday before Halloween we went to a pumpkin carving party at our friends, the Reimers in Orchard Park and had a great time with their family as always. Wendy and Ashley had the house all decorated complete with spider webs and skeleton lights! Last Wednesday we went to a party sponsored by Essential Kids, they are the organization that coordinates the home nursing care for Jon. They have social workers, child life specialists and can help arrange OT, PT, speech help. The child life specialist, Beth and social worker, AnneMarie have come to our house and made pizzas and crafts with Jon and Claire. They both have enjoyed their time with these ladies.
On Friday Jon and I packed up Jon and headed off to Hamilton Elementary to march in the school's Halloween parade. All the children parades outside around the school in their costumes. Big Jon spent hours cutting and painting to make a wooden Thomas the Train that attached to his wheelchair with Jon in his engineer hat. Jon Jon marched with his kindergarten teachers from last year who are now Claire's teachers. Claire was dressed as a witch and marched with daddy and Jon Jon while I took pictures. Mrs. Kulikowski and Miss Marsha were kind enough to let us all participate in the class party afterwards. Jon Jon loved it and definitely was a hit in the parade , he loved seeing all of the teachers and staff. Everyone at Hamilton has been so kind and supportive of our whole family, it has touched us all.

Later Friday afternoon we had a group of family, friends and neighbors over for pizza and wings, Halloween is Big Jon's birthday so we had cake after trick or treating. JonJon and all of us had a great time walking the neighborhood. Uncle Roger, The Bothams, Orlowski's, Grandma Susie, Uncle Steve and Aunt Liz and "Izzy the bulldog all joined Claire, JonJon and mommy and daddy. Grandma Pat and Aunt Julie handed out candy for us. It was a great night and a lot of memories were made. Jon Jon even went back for a second round with daddy and uncle Roger after dropping off Claire and John, Jess and Emma! The neighbors all got a kick out of Jon's train wheelchair. It was a great night.

Jon is holding his own and is fairly stable . He is still going every week to Children's for infusions. A week or so ago Jon Jon had complained about back pain and it got to the point whenever we moved him he would start sobbing in pain. After discussing with his doctors he was sent for an MRI of his whole spine to make sure there were no fractures from the high doses of steroid or disease progressing to his spine. His MRI came back clear with no signs of tumor or fracture. That was a huge relief . We managed his pain with a low dose of Morphine and now after a week or so he is back has been good with no pain complaints or need for meds.

We are still struggling with the mediport site, the wound does not want to close. On Sunday, it looked like there was pus in it, so Jon's doctors told us to bring him in to the ER. Big Jon and Jon Jon set off. The site was re-cultured and blood was drawn and so far no infection has grown in the culture . They think it has some fungus in it and so now Jon is on an anti fungal oral and topical med.

People ask what they can do for us and I guess all that I can say is don't be afraid to call us or stop by the house. We all love company, especially little Jon. I know it is a hard thing for people to see and be around so we understand if there are those of you who can not.

Later I will post some web sites that raise awareness on this horrible disease and the need for more funding for pediatric cancer research. It is amazingly under researched.

Anne