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

19 comments:

allykitty5 said...

I've been following your journey and I'm glad that JonJon was able to go in peace surrounded by his loved ones. Praying for you during this difficult time.

tina said...

Our family will continue to pray for all of you. Thankyou for your bravery in sharing Jon Jon's story with all of us. Words cannot express my sorrow, but I have a renewed thanks for my friends family and blessings thanks to him and all of you, God Bless you all

Nathan said...

On behalf of my family and the Phoenix Fire Dept. I offer our sincere heartfelt condolences to your family. I have personally been keeping JonJon in my thoughts and I know that having all his loved ones there when he passed was an amazing comfort to him. You all have done so much, so many amazing things fo him an brought so much awareness to his condition, JonJon will always be here in our hearts...

The Vaughn Family said...

I'm remembering your family in my prayers during this difficult time. May the many beautiful memories you have of him overflow your broken heart and may your family and friends help comfort you.

The Kelleher Family said...

Our whole family has been following Jon Jon's progress, and every night at bed time our kids all pray for him. At the children's mass at our church yesterday, the priest asked if anyone had someone special to pray for and our 3 year old Brendan stood up and said, "Yes, my daddy's friend's son Jon Jon".

Your experience has touched our family tremendously. I hug all of my children every day and tell them that I thank God that I have them.

This has helped me appreciate what I have and not mind being interrupted, inconvenienced or other such things that sometimes go with parenting. It has made me not even think twice about stopping what I'm working on to "play wrestle", or help someone with their homework.

My heart goes out to you guys, and we will continue to pray for you. I am glad everyone Jon Jon loved was able to be with him and that he went peacefully.

God bless all of you.

Sincerely,

The Kelleher Family

Anonymous said...

Your family is is my heart and prayers. I have been following JonJon's story through my sister and brother in law. I am glad he was in peace and surrounded by family. He seemed like a very special little boy and I am sure he will be a wonderful guardian angel to your family. Love and blessings to you.
The Gauld family

Joerg said...

Dearest Anne,Jon and Claire, You all have taught us such a valuable lesson in love.I always thought that Jon Jon was the luckiest boy ever to have so many wonderful Aunts and Uncles that loved him so. May the goodness in his heart be with us all.
Love, Nancy Joerg

Tiffany from the Barn said...

Dear Anne, Jon and Claire, we have kept your family in our thoughts and prayers during Jon Jon's Journey, I will miss seeing Jon's smiling face at the barn. My brother will miss playing football with Jon at the barn as well. We are both so glad to have known him. He was a great kid. I think it is very special for Jon to have had so much love as well as all his family with him as he passes to heaven. We will continue to keep you in our prayers. Please if you need anything, please do not hesitate to call us. Lots of love to all of you.
Tiffany, Big Guy, Debbie and John Delaney

J said...

Jon and Family

Sending our prayers and support to you all at this most difficult time.
Please know that your blog has touched many people in many ways.

Sincerely,

Scott and Judy Zitzka
(Newstead Fire Company)

Gina Williams said...

I am so sorry another family has had to go through this. I am very proud as I know Jon is of how giving you and Jon are to donate the tumor (which is now finally gone from him) to research to possibly help other children. We did it too. I hope my Brooke was there welcoming your handsome Jon into Heaven. I know there is nothing to say to take away the pain, just know someone else is thinking about you.
Gina (mom to angel Brooke)

Medic604 said...

On behalf of my family, we offer our condolences as we are all deeply saddened by your loss and the loss of one of our extended family members. Jon Jon will be greatly missed. His strength and bravery are to be admired. God has raised him up on angel's wings. Jon Jon's pain and suffering has now ended. Our prayers for your family will continue during this difficult time.
God Bless You All.

Sincerely,
David S. Rice, Sr. & Family
TTPD

Lisa said...

Dear Anne, Jon and Claire,
Stephan and I have kept you all in our prayers and will continue to every day. Anne and Jon, you are both very strong and loving parents and accomplished amazing things for Jon and other children. Jon will always be in your heart. He's at peace now, but more importantly, I truly believe he is now your guardian angel and will always watch over you. Our prayers are with you through this difficult time.

Lisa Robinson and Stephan Guran

Tammy said...

My deepest sympathies go out to your family. I pray you find peace in the knowledge that Jon Jon is now healthy, whole and tumore free. What a wonderful gift you all have given the DIPG community by donating the tumor for research. Your precious boy is so beautiful and I'm thankful to hear his final journey was so very peaceful. You are wonderful parents and I know Jon Jon knew how much he is loved. May the bless and keep each of you.

Blue Lantern said...

Anne, Jon and Claire:
Our thoughts and prayers are with you during this difficult time. Jon Jon will be your angel always watching over your family. Tom and I feel blessed we had the chance to meet such a brave young man earlier this year.
Tom and Donna Pease, Blue Lantern

Jenn said...

We can't begin to express our sympathies to you and your family. We had the joy of meeting Jon Jon when my father shaved his head for St. Baldrick's. Jon Jon was such a sweet little boy. My cousin Jeff who works with your husband has kept us all informed every step of the way. We're glad Jon Jon was able to pass peacefully and will continue to hold you in our hearts forever.
The Abbott Family.

medicmel said...

Dear Jon, Anne & Claire,

Jon, there is nothing in our training that prepares us for the loss of someone we love. There is nothing I can say to make it better or easier for you and your family. But from one medic to another, I am deeply sorry for your loss.

Anne, I have known you in the equine capacity since I was a kid, and always admired your positive attitude and bright spirit. I am still awed by your spirit and by the courage and grace you have displayed throughout this journey.

May God bless the three of you, and Jon Jon as well. You will all be in my thoughts and prayers.

Sincerely,
Melissa (Phillippi) Levitsky, AEMT-P

lake/kroll said...

You are all one Amazing Family. your grace and courage is a lesson for all of us! JonJon has given us the gift of smiles and laughter, that will be with us each day. We think of all of you often and will continue to do so. He will be greatly missed!

Love and Friendship
Beth and Kevin Lake
Morgan and Jake Kroll

connielil said...

Dear Jon, Anne and Claire

Please know you are in my prayers and how very special Jon Jon is. I would like to pass this on to you as it was given to my family when my nephew passed from cancer.

God Bless
Connie (DENT Neurologic)

What is a family?
You waited many months for my arrival, you were there and saw me when only moments old.

You had dreams for your son, you'd see him grow go off to college and marry someday.

God had other plans for me, I'm just me. Something hasn't hooked up right inside me.

I'll be a child of God for all time. I'm happy, I love everyone and they love me.

There aren't many words I can say, but I can communicate and understand affection, warmth, softness, and love.

There are very special people in my life, sometimes I sit and smile and sometimes I cry, I wonder why?
I am happy and loved by special friends, what more could I ask for?

I guess I won't go to college, or marry, but don't be sad. God made me very special, I can not hurt only love.

Is that why you are my family? I know you are soft and warm and give me love, but there is something very special in your eyes. I see that look and feel that love from others, I must be very special to have so many.

No, I will never be a success in the eyes of the world, but I promise you something very few people can, since all I know is love, goodness and innocence eternity will be ours to share my special family.

Love Jon Jon

Linda Thomas said...

I am so deeply sorry to hear of JonJon's passing. I have been out of town this week and just got back to check on everyone. I am glad that JonJon was surrounded by love and peace as he earned his wings. I will now continue to pray for all of you as you grieve this tremendous loss.