Tuesday morning I awoke to reality and struggled to face it. Jason was wonderful. We stayed in bed crying and praying until the last possible moment. Sorry to Jason’s work if he was late that day, but I really needed him. I was able to compose myself and prepare for our trip to San Diego. The truck was loaded up for the week stay at Grandma’s house and the house was left “as is” for Jason to navigate through while he stayed at home.
Besides facing the reality of dealing with Les’ disease, Tuesday was difficult, because I knew they would need a blood sample from Les. Les is terrified of needles, as are most children (and some adults). I didn’t know how Les would take it, and I really didn’t want to subject him to that yet again. It’s so hard to weigh my motherly protectiveness from the “little” things like the needles against the overall protectiveness of saving his life by allowing them to poke him.
Children’s Hospital is wonderful. They have a staff of Child Life Specialists whose only job is to play with kids and help them to adjust to this new experience. I called Debi, one of the Hem/Onc Child Life Specialists on Monday asking if we could come in before our appointment on Tuesday and “play” with her a bit. She was most helpful. She brought in a lot of medical stuff and we played. We had a basin with about a ½ inch of water in it and some syringes and IV tubing. Les loves playing in water and quickly learned how to shoot the water out of the syringe straight up in the air to make a fun fountain. Sometimes he didn’t keep it at a perfect 90degree angle and Debi seemed to be right in the line of fire, which thrilled Les to pieces. Debi went to check on our appointment and came back with the wonderful news that Les only needed a finger poke. Debi stayed with us for most of our visit that day. She brought bubbles and a mini pinwheel for Les to blow on during the blood test. Nobody cried, not even me!
After the blood test and vitals, we were given a pager to notify us when the doctor was ready to see us. We went back over to the activity center and checked out a toy to take with us.
The doctor’s visit was easy. He just observed Les and asked how he was doing with his recovery. Short, sweet and to the point.
Back to the activity center where we gave our toy back and one of the volunteers played with Les on a mini pool table while I made some calls regarding future appointments. They made ramps out of the pool cues and rolled the balls toward the holes. They crashed the balls together and had a great time. Les really didn’t want to leave the hospital, which I guess is a good thing in the long run, but makes mommy frustrated sometimes. I lured him away with the promise of chicken nuggets at McDonalds and away we went.
Grandma Sue met us at a park on Harbor Blvd. for lunch. We brought our chicken nuggets and had ourselves a picnic. The weather was overcast and cool, but our spirits were up. Les even bragged about not crying during the blood test. After lunch, it was home to Grandma’s.
Just a note of clarification: My Grandma Amick (Les’ great-grandma) and My mom (Les’ Grandma Sue) live in the same house.
Les and I went grocery shopping for our favorite foods to stock in Grandma’s refrigerator. Les was a great helper and walked much of the time while in the store. After dinner, Grandma Sue gave him a bath and put him to bed. We read a special story to Les about a little girl who got a “port” (which is what Les was going to get the next day). Debi had given it to us for just this purpose.
I called home for messages and found out that Les’ surgery the next day had been moved up and we were to arrive at 7:20am instead of 8:00am. This meant that Les would not be able to have food or drink in the morning. Les was still awake when I went in to check on him and he said he was hungry. So, out of bed he came and we had breakfast “in the middle of the night” (at 8:45pm).