Home

Our first day home. Tom is all over all of us about keeping the house clean. Riley sorts out his pills and takes his dose with a little yogurt. I hear Riley use the bathroom, but he doesn't flush. I call out "flush and wash". He says "come here mom, you need to look at something". The tone of voice got me up quickly and to the bathroom. There is red in the toilet. Riley has peed blood. I frantically look for the number for the clinic. We have yet to post it handy. I call. The doctor on call says to have Riley drink a lot of fluids and if he still is peeing blood, call back. The next time he goes to the bathroom, it is more natural in color. Tom looks up on line some possible causes. We decide it was dead red cells being expunged from his kidneys. But I will definitely add it to our list of questions for the doctors on Monday.


My brother and his family are expected today. They come and play. Riley has a delightful time. My sister in law and I sit outside in the sun. It feels so good to be outside after all that confinement. We even pull a few weeds. I will have to tackle the rest of the yard eventually.

Tom told me the guys who worked on my yard last summer stopped by to see if I wanted them to do any more. I think I have blown my budget though, on Riley's new mattresses. Riley says the new mattress might be a little hard, but he can stand it. He appreciates that they are new. His room looks great.

My sister in law's parents stop by to give us hugs. It turns out that they have had some family experience with bone marrow transplants. They have a packet for Tom and me on the subject. Tom, and Bill and my brother spend the afternoon watching the gold medal hockey game and discussing Riley's illness. Tom is impressed by the amount of knowledge Bill has on the subject and enjoys the discussion. Later after everyone leaves Tom reads the information packet they had brought.


He is beginning to think we may need to readdress the bone marrow transplant. I tell him three months, we need to give this treatment time to work. The doctor said three months. My sister said I really have a "Sophie's Choice" going . Its true. We are damned if we do and damned if we don't. I think back on the afternoon and the issues that my brother's in laws had shared. They had made it through some horrible and tough times. They survived. People are resilient. We can survive this.

I try to hand off a plant to my sister in law. I would like to get all the plants out of the house. Tom wants to keep it for sentimental value. It was sent to him when his father died last month.
It is funny what sets us off these days. Some times we are such a team and then sometimes the cracks show where the stress points are. Tom is still grieving his father and I forgot. I still want to find homes for the plants but just not that one, not yet anyway.

At 6:00 pm Tom reminds Riley of his injection. Riley likes the lidacaine and it has to sit for a half hour to numb the skin. At 7:00 pm we warm the syringe in our hands and Riley sticks himself, counting aloud to 5 before pulling it out, just like the nurses showed him.

We gathered all the dirty dishes from around the house at bed time. It is amazing how they hide and accumulate in one day. I sent most of the left over cake with the neighbor boy. He stopped by this evening to check on Riley. He is one of the most thoughtful children I know for that age. He has a fleece blanket for a gift. I let the boys play, but it is a school night so at 8:00 I send him home.

Trevor did have homework so whining the first ten minutes he sits at the dining table and begins his math. I have a copy of missing assignments. We are able to match which ones still need to be done and which are duplicates. In 45 minutes he gets it done. But it did take us a good ten minutes of "what about Riley? why isn't he doing his work?" and Tom finally stepping in for Trevor to just begin.

I listen to the call from the tutor finally. She left it yesterday. I give her a call. I discuss Riley's condition with her. We make an appointment for Wednesday at 1:00 pm for two hours. I explain how dangerous germs are to Riley and how careful we must be. I tell her about the disease so she knows what she will be dealing with. I am so glad that the school is willing to work with me. Riley has appointments twice this week, so school will have to work around it every week. She is willing to be flexible. I warn her if she thinks she is the least bit sick to please just reschedule. She understands and will work with us. She just has to be able to get 5 hours a week in during each month, for billing purposes, twenty hours a month.

I check Trevor's work and staple his math together, less likelihood of losing papers that way. I check for his name and he has to add it to the top of a few pages. I would like to tackle another class tomorrow if possible.

9:00 pm I cut the boys off the computer and tell them brush teeth, bed time. Tom wipes down the kitchen and we settle in. My chest feels tight now all the time. I just wait for the next shoe to fall, the next nose bleed. That loose tooth is still in Riley's mouth. I can't wait for clinic tomorrow. I feel so much safer having him in the hospital. His new tutor had asked why isn't he in the hospital. I said they just can't keep him locked up forever, not unless he is sick or they are treating him. But what are we going to do? Well, we don't really have to think too far ahead any way. Just one month to three months, then we see where we are.

I asked the doctor at checkout yesterday about our summer plans. She said don't cancel anything yet. There is time. One to three months of time, in my mind, May. We wait for May. But with all those platelets transfusions I pray we have until May. Tom is thinking bone marrow now. The more he reads, bad and harsh as it is, long term it may be Riley's best shot at life.