Monday, November 3, 2008


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.



Linda Thomas said...

Hi Jon Jon,

It sounds like you had a lot of fun on Halloween - that's great!! And I'm so glad your back feels better! You are in my thoughts and prayers EVERY day!! You are very special to all of us at Send Love Today

Hugs & Love, Linda Thomas-Send Love Today

Smilen Champ said...

Hi Jon Jon and Family
My name is Jenna and I came across your site. You are an amazing brave,courageous fighter, and a real hero! That is so great that you had an awesome Halloween! You deserve the best.
You will be in my thoughts and prayers.
My site is:

Denise D said...

Dear Jon Jon,
Best coustume I have ever seen!! Tell your Dad Happy Birthday for me I forgot it was on Halloween. Tell Mom and Dad to keep blogging with pictures because it puts a smile on my face to see how brave you are. Stay strong!
Denise (niecy)