How do you plan for the unknown? Most of us like to plan ahead, at least a bit. If we go on a vacation, we like to know where we are going, what the weather will be like, what we will be doing, and what we will likely wear.
For example, if I plan a trip to Hawaii, I doubt that I will want to take my heavy winter coat. Instead, I will take light weight shirts, shorts, khakis for eveningwear and of course my swim suit. I will also plan to take enough clothes that I will not have to do laundry while I am there.
If I plan an Alaskan cruise, I doubt that my clothing choice will be the same. That heavy coat may be appropriate if the cruise is early or late in the season. I will probably take long sleeved shirts and heavier pants. I still want to take enough, but having been on a cruise (to Mexico during Spring Break – as chaperone for a group of high school seniors), I know that a cruise is a horse of a different color.
Now, how do you plan for a trip to Hawaii if you don’t know if you will stay for one day, one week, or one month? How do you make hotel reservations? How do you purchase round trip airfare? How do you know how much cash to take with you, or how much the trip will cost?
That is the issue we face with our next trip to MD Anderson. We don’t know how long it will be. It could be an overnight trip. It could last a couple of days. It could be a week or two. It could lead to the transplant, which will last 100 days. We don’t know. How can we plan ahead? What do we take with us? How many clothes? What about food? How long will we need to stay in a hotel? What about long term housing if it leads to a transplant? Too many questions. Too many possibilities. Too few answers.
What we do know is that the likelihood is that I will enter a clinical trial for an experimental drug known as ABT-199. It shows great promise for long term reversal of CLL. It is very active, causing cancerous cells to die very quickly. It is dangerous. Two people died because the drug acted too fast for the body to clear the noxious remnants of the destroyed cancerous cells. Therein lays the problem. The seven day hospital stay and remaining in Houston is to very carefully monitor my health so that any adverse effects can be dealt with quickly and efficiently.
I will stay in the hospital for seven days. Melanie will have to stay somewhere else. Fortunately, we found a long term stay hotel, Candle Wood Suites, that will provide for her needs: a well equipped kitchen, shuttle service to the hospital and Kroger’s, and a comfortable environment. Unfortunately, we have no idea how long the stay will last. After the seven days, we will need to stay in Houston for an indefinite time period. How long, we don’t know.
How do we pack? What do we pack? How much do we take? Do we take the car or not? If we fly, how do we return home? How much will it cost? How much will we ultimately pay the hotel? (the longer we stay, the cheaper the daily cost.) These are the unanswered questions. These cause sleepless nights and frustrating days, especially for Melanie. Bear in mind, she likes to have things planned down to the nth degree, and she doesn’t like to have her schedule messed with. Too bad, honey. You will have to learn to go with the flow this time. If we forget something, we will have to replace it in Houston. Or we will have to do without. If we don’t have enough, same answer.
How can you help us? Pray. Many of you pray for us daily or more. Keep it up please. Pray for peace. Pray for safety. Pray for our housing. Pray for sufficient finances. If you can help financially, please go to our “Help Harley” pages at http://harleyhudson.com. There you will be able to help us via PayPal or find our address to share with us via check.