The room party

We are loud and boisterous. The children break out the candy and chips, and sandwiches. One of my friends just got back from the Olympics. She had loaded her children into the minivan and headed north. She had been surprised at how easy it was. The tickets for her toddlers were expensive at $75 a piece. But going to the Olympics was on her bucket list. They had gone to the curling event. she also showed us her pictures of a new rental she had purchased in Vegas, a house only 3 years old in a gated neighborhood for a rock bottom price.

The women talk. I am so happy but also nervous. Is the house clean enough? Tom was supposed to get things done yesterday, but he talked to a friend instead and had a quiet time. He admits he has been caught "flat footed" he says . Thank goodness one of his sisters drops by to help him. My friends slowly trickle away, leaving just Riley's oldest best friend and his mom. She is politically active and wants to pick my brain on insurance.

I tell her I want medical IRAs funded by 401ks. I dislike flexible spending with its use it or lose it
plan. If it would accumulate and roll over each year it would make a lot more sense. She asks about minimum wage earners. We agree children through high school can be covered under a government plan. But that already exists in Oregon. Why do we need to legislate it more? I like catastrophic insurance with a high deductible, low premiums. The kind only needed in cases like Riley's or for really serious issues like heart attacks or car wrecks. Fund it the same way as social security with the premium taken from pay checks. Kind of an insurers insurance plan. Every day stuff like ear infections and colds should be under a totally separate plan, the flexible spending or IRA. There are programs and clinics already in place for the low income, I argue. She argues for the protection of the poor and common man. We enjoy the discussion and debate.

She also sets Riley up with a skype account so he can video phone his friends. We talk about how he could attend his classes through this during the week. The boys sit two feet away from each other and talk to their camera pictures of each other, laughing at the echo.

My mom arrives and starts packing up the room. There is a huge accumulation of stuff from over a week of living in one room. We ,Tom and I, had brought in a lot of things to make us comfortable and had taken nothing home. We discuss getting the dog. she agrees to bring him over this evening, I'll put him in the car and he can wait until we are discharged.

My stepmom arrives with another dear friend and entertains Riley while we all carry a load of bags and things down to my car. Riley is contented lying in the bed. We come back up, the room seems so quiet now that everyone from the afternoon party has left. My family chats for a while with me, pleased with the news Riley is coming home.

All through the day, Riley has been receiving his last dose of ATG. It ends and the red cells finally arrive. The grandparents leave. Since this is Riley's first red transfusion, the nurse hangs out with us. She answers my questions about Riley's treatment and drugs. She gets me copies of the side effects to watch for at home. She is very calm and informative. She is so nice, its subtle, you almost forget she is really hanging out to see if Riley will have a reaction to the Red.

All of a sudden Riley turns pink, a Rosy color he has not been in months, I realize now. It is so dramatic, the nurse takes his vitals. He is fine, but it is definitely a change of color. The Red comes in two doses, each one takes two hours. The nurse tells me it will be closer to 9:00 pm before Riley will be done and discharged. I am just running on adrenaline.

We finally reach discharge stage. The papers are brought with more home instructions. I make two more trips to the car. I even fill a wagon full of bags and boxes. The car is full and I am driving the Jeep, which has huge cargo room. Tom feels its the safest car and requested I take it. The last trip I have is a giant bouquet of aluminum balloons, one of Toms sisters had sent. It is so big I am not sure I can get them in the car, but Riley has insisted we take them. He wants to show them to his brother.

I am leaving the isolation ward, but have picked up a small follower. A little boy has seen the balloons and is trying to follow me out, escaping the ward. His father is trying to stop him. Outside the ward is his family, Grandma and another woman and a little friend. neither child is more than 3. As I walk towards the elevators I hear the children begin to cry. I turn around and go back. Using my car key I cut a few balloons away and hand each child a balloon. A nurse from the ward has joined them to assist in returning the runaway. I give her a couple more saying that I am sure she knows someone who might need them. I head for the elevator with the more manageable bouquet. They are still a tough fit in the car, but I get them in.

Riley wants a wheel chair ride. The nurse says he can walk. He says "What about hospital policy?" She tells him he is fine. After walking into the ER on Wednesday night February 17, we are walking out on the 27th at the same time. Bucky is quietly waiting for us, thrilled to be with us again. I have asked if Riley should sit in the back or front seat. The nurse said it didn't matter so he sits in front with the dog on his lap. We loop down and out of the parking garage to the exit and leave the hospital behind us.

We pass the Chart House were Tom and I snuck out to dinner. The fancy cars pack the parking lot. I point the place out to Riley, thinking how our dirty jeep with a roof box must have looked next to that new red porche we parked next to the other night. I am beginning to feel the day. Riley says he is tired. All he did all day was sit in bed and play with his play station with friends. But it was a long day regardless.

Tom has bought a cake. It says "Welcome home, Finally". Trevor helps me unload the car. It takes multiple trips with just the two of us and no cart. Riley brings in the balloons, and immediately notices they are a few shy. I tell him they wouldn't all fit so I had to give a few away. Its such a big bouquet he doesn't mind. Tom's clean house is now littered with packages. He shows Riley the meds he picked up from the pharmacy. They talk about them, making sure they both know what is to be taken and when.

The boys sit down to watch TV, but Riley shortly gets up and says he is tired and going to bed. Tom sneaks out to smoke a cigarette outside. I follow him. He as a glass of wine. I swipe it and take a sip. He gets another glass. We sit in the dark on our patio, going over the events of the week and our hopes for Riley in the next couple of months. Tom was torn that had we known of the good donor we might have just gone for it, but he says he ran into the doctor outside the ward this week and spoke to him about it. The doctor said that the treatment for bone marrow is a lot rougher on Riley than what Riley just went through. So we are content with trying this first. I couldn't resist asking the doctor if Riley's numbers trying to hold on this week were the ATG working already. He said "What did I tell you?" I responded "One month minimum, but more likely three months." He smiles and nods. I pray it works.

Meanwhile Tom and I sit in the dark outside. Tom opens another bottle. I swear I only had three glasses, but Tom told me I woke in the middle of the night and asked for the vomit bowl. He told me he said I could make it to the bathroom. I was a big girl. I don't even remember the conversation taking place. What I do know is I woke this morning with a rip roaring headache and still in my clothes from yesterday. But I am glad to be home.