We had a funeral for Henry on December 29th, over 200 people showed up to celebrate his life. On August 8th, we buried his ashes on Cannon Beach.

That's it. That's the story of Henry. He lived a short amount of time, but had a lot happen in that short time. I tried to be as complete as I could, but I know I've missed some details. As you grow up, you will ask more questions, and we will have more answers for you.

I've said this before, but Owen, you are the reason dad and I survived this. You helped us to have reason to get up the mornings we didn't want to. You have a perfect way of being funny and sweet when we need it. Snuggling you gives me strength.  You are an amazing kid who has been through a lot too.

I hope you know how much you are loved. How much Henry loved you. And how lucky you both were to have each other as brothers. You will always be Henry's big brother, even if you don't get to grow up with him.  I hope you always remember him, even if it's through pictures and this story.

I love you. Always and Forever,
To the moon... and back,
Mom

December

Henry was getting closer and closer to dying. We talked to you about it a lot. You knew he was sick, and that he would stop breathing, that his heart would stop beating. You knew that he had no immune system, and that he couldn't fight off infections. Henry's breathing got worse, He continued to lose weight and get weaker. He slept a lot. Even towards the last few days, when we tucked you two in at night, Henry would call out, "love you to the moon... and back!"

 

We told you that we weren't going to talk about Henry dying in front of Henry. From the beginning, we didn't want to scare him, and you never did. You asked once if Henry knew. If Henry knew he was dying. I think he did. I don't know if he knew what it meant, but he was adamant about not having any more TPN, or tubes up his nose. He knew he was weak and sick. In a quiet moment, a few days before he died, I whispered in his ear that he was dying, and that we would be OK. I told him that we would take care of you, and that we would be OK. That we all loved him, and we would miss him. That he was brave and taught us all so much. I doubt he understood, but I wanted him to hear it.

 

We snuggled a lot with Henry. For a long time, I was the only one that he let hold him, but as his body grew tired, he let everyone hold him and surround him with love.

 

Rarely, he felt good enough to travel, but he needed all of his drinks with him, and his toys. Remember, he had a Thomas the Train box that held his favorite toys, including three Optimus Primes, Doggie, a small black train and a tiny red dice.

But mostly, we stayed home and snuggled.

Each night when we put him to bed, we honestly didn't know if he would be alive in the morning.

It was emotionally exhausting. We tried to be there for you and Henry, and for ourselves. Henry's breathing continued to get worse, it was fast and shallow. His heart was beating fast. He was so skinny.

 

These are the last pictures of Henry alive.

On December 20th, 2013, I was sitting on the couch holding Henry. You were beside me watching a Spiderman cartoon. Something happened, and I called dad from upstairs. He got to us right as Henry was taking his last breath. He died at 2:05pm, in my arms, surrounded by love.

I don't know if you want to see pictures of Henry after he died. But we took them. You were so sweet with his body. You helped us bathe him and dress him in his fireman shirt. You brushed his hair, and even took a small clipping of his hair.

November

Henry wasn't eating much, and was losing weight, but he seemed to feel pretty good in November. We took this time as a gift, again, making as many memories as we could.

 We went to Astoria. He still wore that fireman shirt every day.

 Henry started walking less and less. I carried him almost everywhere.

 Seaside Carousel.

 We decorated our Christmas tree Thanksgiving morning.

 Went to Grandma's house for Thanksgiving.

Holiday Express Train ride. 

 While he had good days, or good hours, Henry's body was growing weak. He wouldn't eat, and sometimes not drink. Sometimes, when your body is dying, it tells your brain not to eat. That's what happened to Henry... he just didn't want to eat. He got morphine for pain, and Ativan to keep him happy. Sometimes, when he had the right dose of drugs, he would eat a little bit. One time, all he wanted to eat was marshmallows from Lucky Charm cereal. Another time, he just wanted to drink purple Gatorade. Whatever he wanted, we tried to get for him.

Henry would walk to the fridge and grab the drugs he wanted. At some point, his PICC line came out, so we switched from IV meds to liquid he drank.

October

Dad and I knew what was happening, Henry was dying. We didn't know when, we didn't know how soon, but we knew. It was really hard to balance making happy memories, and crying knowing what we knew.

 

 Henry was short of breath often, so we tried medication to help his breathing get better.

 We went to his favorite pumpkin patch again.

 After that night, Henry got really sick. He was so sleepy, and barely breathing. That night was the night we had hospice start following us. I snuggled him in his blanket. You went to Mimi's house. Dad and I thought he was dying that night. We started to take him upstairs, to snuggle him in our bed, and he woke up. He demanded macaroni and cheese. He hadn't eaten in a few days, but he really wanted macaroni. So, dad made it for him... and he ate an entire bowl full.

 You started to ask really good questions about Henry. We always tried to be as honest as we could with you.

 We went to the beach, because Henry felt better. Joe, our hospice nurse, told us that little kids get really sick, then feel really good again. So, we tried to do as much as we could when he felt good.

 We even took him back to clinic to check his labs one more time. They showed his immune system was actually worse. We had a small hope that things had changed, but these labs proved to dad and myself that we were doing what was best for Henry.

 In the end of October, the Children's Cancer Association rented us a house in Lincoln City. Mimi, Bob-Bob and Grandpa went to the house for two nights.

 In the middle of October, Henry said he was done with TPN.  He didn't like being hooked up to it. And, we decided we were done with it. Henry actually felt better for a while off TPN. He wasn't eating enough to provide all the calories he needed, but he was happy.

He was a fireman (again) for Halloween. You were Thor.

make-a-wish

In the end of September, we went on Henry's Make-a-Wish. We went to Seattle. Henry really wanted to ride on a monorail, so we made that happen for him.

We went to the aquarium

And rode on a seaplane

We toured Seattle.

And got to eat dinner on top of the Space Needle.

We also got to ride a steam train in Snoqualamie.

 

When we got home, our local fire station surprised us with a ride in the fire engine.

Henry smiled so big when he got to spray the water. That shirt... he wore that shirt all the time. I would wash it at night, so he could wear it the next day.

Henry was still taking medications to help try to keep him from getting sick. He loved to help draw up his medicine.

We could see he wasn't getting better.