I think we got to go home more often than other kids, partly because dad and I weren't scared to give a lot of medications at home. We also realized the importance of getting back to the hospital when Henry got a fever. We had a bag packed by the front door for the times when we emergently went back to the hospital.

 

When we weren't in the hospital, we would visit dad at work.

 Or play at home.

 Or go to the airport to watch airplanes. You loved airplanes, Henry loved watching the helicopters.

Seaside

Somehow, we ended up at the beach a lot. This time was an overnight at Seaside.

 You and dad tried to fly a kite, while Henry played in the sand.

 Clean off time in the bath.

 Henry loved to be naked. You two would run around naked, dance naked and giggle naked.

October Beach Trip

Cannon Beach. It was a perfect October day to spend time at our favorite place.

When Henry felt good, we made each day count. We went to Multnomah Falls, or the beach, or the airport... anything we could think of to make memories.

 Henry got a feeding tube in his belly, so that he didn't need a tube in his nose anymore. He didn't feel like eating because of the chemotherapy, so we would feed him. This way, we knew he was getting enough calories. He also had a port placed, so we could give him medications and draw his blood easier.

Henry loved bath time with you. You would make him laugh so hard!

 Cousins!

 He was a happy guy, unless he was on steroids... then he was grumpy!

Home and hospital, we tried to stay funny.

 

 

 On your third birthday, I woke up in the hospital with Henry. During the night, he had ripped out his central line (or Hickman). It was a very stressful morning.  Dad was at home with you. We arranged to have Henry's chemo pal Christina be with Henry, so we could celebrate your birthday at home. You wanted a chocolate cake, with chocolate frosting with M&Ms on top. While we were home celebrating with you, we got a call that Henry was getting really sick with a fever. Dad and I wanted to be in two places at once; at the hospital with Henry, but at home, celebrating you.

When it was time for the cake, you quickly blew out your candles, and grabbed a fork. You dug right in. You didn't wait for a piece to be cut, you just started eating. Grandma, Grandpa, BobBob and Mimi were all with us, we all started to laugh. We all grabbed our forks and followed your lead. That is the great thing about you through everything, you could always make us laugh. You have a great way of keeping our hearts smiling, even when they want to cry.

 

We spent time in the hospital. We spent time at home. But we always tried to be together as a family. We tried to get you two boys together as much as possible... you two loved to spend time together.

 

Remember how puffy his face got when he was on steroids?

 At home, you two would play together too.

 During that first year, Henry received lots of high dose chemotherapies. He required blood and platelet transfusions. He had high blood pressure, so was on medicine to reduce it. He was on TPN for a while because he wouldn't eat because of bad mouth sores. He got a central line, called a hickman to give medications and draw blood. He had bone marrow biopsies and lumbar punctures for chemo. Through it all, we tried to stay as normal as we could.

 

Diagnosis

The day after Henry's first birthday, you and I took him to Dr. Snyder's office for his one year check-up. That morning, when I was getting him dressed, I noticed a small rash on his body. It's called petechiae,  like lots and lots of tiny bruises. I knew this was bad.

 

When we went to see Dr. Snyder, he was really concerned. Henry was pale, lethargic, had patechiae, and his belly was big. He sent us straight to the lab to get some blood drawn. Dad met us there. After Henry's labs were drawn, we went home. We put Henry down for a nap. You were still awake when Dr. Snyder called. Over the phone, he told me that Henry had leukemia, and that we needed to go straight to the hospital. I fell to the ground crying. You brought over a toy, gave it to me and told me that it would be OK. You gave me a hug. You were amazing through this entire journey, starting at the very beginning.

 

Bob-Bob came over to watch you, while dad and I took Henry to the hospital. He went into the intensive care unit, where they tried to fix his blood. His white blood cells were over 301,000 (normal is 10,000). His Hemoglobin and Hematocrit were 2.4 and 5, very very low.  They didn't know if he would survive the night. Henry had a breathing tube placed and they started plasmaphoresis, a process to get ride of the extra white blood cells.

 

The next day, we were told that Henry had a rare form of leukemia called infant leukemia. He had a 50/50 chance of surviving. Less than 50 kids a year are diagnosed with infant leukemia. We were told that for the next two years, we would be in the hospital a lot. They told us that we would need to make the hospital a fun place for you and Henry.

 

This is Henry in the ICU.

 

 A tube in his nose to help feed him. Also a big IV out of his shoulder to help give him medicine.

 We took you to the hospital to see Henry as soon as we could. He had to wear a mask when we was out of the hospital room. You were happy to ride in the wagons, and even found where they hid the flashlights.

 We tried our best to keep Henry happy.

 He started steroids, and he loved to eat! His cheeks got so puffy!

 Do you remember his pink rattle? He was teething during the first few months we were in the hospital, so they found this toy for him... he carried it everywhere with him. And look at that crazy hair!

We quickly found a routine. Dad and I would switch nights staying in the hospital or staying with you. We brought you to the hospital almost everyday to see Henry and to spend family time together. You would run in the halls and laugh with the nurses. We would eat picnic dinners or lunches in our room. We understood how important it was to be together.