The doctor increased the amount of times Owen can receive the bolus of morphine. It's not that he needs it often throughout the day, but the way it was prior to the change, he could only get the bolus push twice an hour. Now, he is able to receive it every 15 minutes. Again, he does not need it that frequently, but he is in pain when we move him to change his clothes or diaper or position. We do give him the push before we move him, but now being able to give him another one afterwards is much more comforting for me because I know that that will make him more comfortable!

He did not eat at all today, and only one small spoonful of yogurt yesterday. He did take a few small sips of water. He is markedly weaker, and is opening his eyes less frequently, and for shorter periods of time. His extremities have been cold, so he is under 3 blankets-his "mommy kiss blanket", which is the blanket exactly like the one I had when I was a child and bought one for each of the three boys. When I left the hospital to go to work in the morning, I would cover the blanket in "mommy kisses" so that when he missed me during the day, he would always have a kiss from me, and he could be wrapped in my kisses, as well. His brother, Anthony, gave him one of his blankets (Blue Silky-it was a blanket Seth had laid on when he was a baby, and Anthony took it over when he was born). Since he has been so cold, I also added a fleece blanket that was made for Owen by Matt's niece, Heather, last summer, thus earning the name "Heather blanket". So many people have given him a blanket for a gift, so I imagine he will be using all of them from here on out since his circulation is starting to decrease. One of Frank's friends just made him a Power Rangers blanket, which will keep him very warm.

Tonight, while watching television for a short bit, I saw a commercial for tires that had the song on that Owen and I used to sing to each other..."Never gonna let you go, I'm gonna hold you in my arms forever..." I imagine there will be things quite literally every day that will remind me of him when he is no longer able physically here.

The day of Owen's surgery, I went upstairs to his room on the 9th floor to move all of our things to the PICU where we would be staying after the surgery. While I was up there, one of the nurses came up to me and handed me a penny. She said, "When we moved Owen's bed to clean in the room, we found this under his bed, heads up. We thought you should have it." I thought that was awesome of her to do. I took the penny, put it in my pocket, and didn't give it any thought until a few days later. There is an organization at Women and Children's Hospital called Stone's Buddies. They ensure that children and parents have people to talk with, and plan events where families are able to meet and form friendships. The group was named after a little boy named Stone, who was 4 when he passed away from a brain tumor. I received information about Stone's Buddies, and while reading it, my jaw dropped. One of the things Stone always had in his hand was pennies-he collected them. This is the story from the Stone's Buddies site:

According to Stone’s mom, Stone is forever sending tiny reminders that he is watching over her by dropping pennies from Heaven where she can find them.

From the earliest days of his diagnosis with a brain tumor, Stone’s tiny hand was often seen wrapped tightly around a fistful of pennies. He loved coins and collected them faithfully every day, depositing each coin in his piggy bank for the rainy day he somehow knew would come in the future.

When Stone left this Earth at the age of four, Stone’s mom
believes that – somehow – he took his special treasure with him. Every time she finds a precious penny, she knows it’s a priceless reminder of the love she shared with

Stone and his assurance that she will never be alone.

I got chills after reading that, and that one small penny the nurse gave me took on a whole new meaning. I spoke with Stone's mom, because I wanted to share that story with her. She told me that when she finds a penny heads up, she feels it is Stone saying "I love you." When she finds one tails up, it means "I am thinking about you." I never leave a penny on the ground now. Even the littlest things can have their meanings changed so significantly during a journey like this. Everything becomes so beautiful. Even a cold, rainy day (even the 11th one in a row!) can be captivating. There is purpose, there is beauty in every single day, even the dark and dreary ones that we think will never end. Think of all of the horrible things that would happen if there was no rain...there would be no puddles to splash in, the flowers and trees and plants would not grow, oceans would evaporate, there would be no rainbows...A life without rain would mean we would lose our appreciation for the days filled with sun.

Because moving Owen has been causing him so much pain, the doctor increased the amount of medication he receives in the bolus push of morphine. Prior to moving him to change his pull up and fluff up his pillow, etc this morning, I gave him the push of medication, and when I picked him up to move him he didn't flinch. I took that opportunity to keep him in my arms and hold him for over an hour today. He feels so wonderful-just perfect in my arms. I can't even describe how amazing that was. I have the knowledge in the back of my mind each and every time that I hold him that it could be the last time I do so, so every time is so, so special.

Since I have sent the link to my blog out to some new people, I thought I would recap some things so that they do not need to read all of my previous posts.
Owen's scans in April showed that his cancer had returned, and that there were over 20 tumors scattered throughout his brain, and two small ones in his spine. At that time, we were told that any treatments would be palliative-that there was nothing that could be done to cure him at that point. The doctors also called Make a Wish to move the trip we had planned to take in July to the week after we got the results. He was put on a mild chemo that was hoped to slow the growth of his tumors and give us some more time with him, but there was nothing promised. We were told that, with his degree of relapse, that things could progress pretty quickly.
Surprising us all, Owen was still doing very well when he had a follow-up scan in July. He was still walking (almost, I dare say, better than he had since losing his ability to walk post-surgery). We didn't notice any difference in his memory or higher level processing, or his ability to laugh. The night of the scan in July, Owen was at his father's house. Frank went out to light the grill, and when he came back in, Owen was unresponsive on the couch. He called Matthew, me, and the nurse to come to his house. Owen was indeed unresponsive, and he was having some seizures. At that time, it appeared to all of us, including the professionals, that our time with Owen was very limited.
The oncologist increased Owen's steroid to reduce the swelling in his brain. His father and I decided to stop the chemo, and it was at that time Owen was placed in Hospice Care. It is such a blessing to have him at home with me-I cannot imagine how incredibly difficult life would be for all of us if we had had to have Owen cared for at the hospital from that point on!
With the increase in the steroids, Owen bounced back to his usual old self-a little more tired than he had been, but still able to walk and laugh and play. We are at the point now, though, where Owen sleeps most of the day. If he is awake, it is for a few seconds at a time. He does not talk much, and has not been eating or drinking much at all now. He is on a morphine pump continuously, which keeps him comfortable, so he is not in any pain, except when we move him.
People talk of miracles, and I firmly believe that we have had, and continue to have our miracle with Owen right now. He has far surpassed any predictions or expectations that we have heard, and continues to amaze me with his strength and spirit.

I was talking on the phone while sitting next to Owen this morning, asleep. I told the person I was on the phone with "I love you" to which Owen answered me "I love you"! God, I wish I had the video recorder going all of the time, and I could have captured that moment, that voice...It was such a gift for me to have him tell me that!

I recorded the Stand up 2 Cancer event that was on Friday and watched it two nights ago. The 11 year old child on the show who was shown and is the spokesperson for Brain Cancer has medulloblastoma-the same cancer that Owen has. There was also a child depicted, as well, when different celebrities were talking about real-life stories from people who have lost their lives from cancer. The celebrity discussing that child ended with "My son was 4 1/2. All he wanted to be was 5." That was the only point during the show that I cried, because holy cow, it completely captured exactly what is happening right now, and how Owen, and all 4 1/2 year olds, feel about life. I will from here on out stop complaining about birthdays and getting older. So many never even have the chance...