A Different World

Seven days has never seemed so long. I'm sure it feels even longer go Henry. Its obvious he's tired of lying in bed day after day, seeing people come and go while he has to stay. He's even begun to deny the television as a source of distraction. During his moments of relief today he played with dozens of cars and trucks and has been play acting with his teddy bear, delivering medicines in tubes we've made to look like his central line. He takes the bear's blood pressure and temperature, changes its bandages, and gives it medicine, then says, "You're sick. You cannot go home!". One more day we tell him, one more day.

Yesterday evening Henry received the same dose of medicines as the night before; Etoposide (2 of 3 doses) and Cyclophosphamide(2 of 2 doses). Tonight, along with the final dose of Etoposide, Henry will receive Cisplatin. This drug is the reason for the baseline hearing tests done last week. One of its more frequent side effects is loss of hearing in the high pitch range. They dose very carefully and conservatively to do everything to avoid this outcome. He will be tested at the end of the month for hearing loss. They assure us that the tests they do will be able to detect otherwise unnoticeable hearing loss. As with some of the other drugs, it may also contribute to the hair loss (alopecia) seen in chemotherapy patients.

In addition to the chemotherapy medicines he is on, he has been on several medicines for nausea - Odansetron, Benadryl, and Ativan - as well as one to prepare him for the Cisplatin called Mannitol, which apparently opens the blood-brain barrier (for greater chemotherapy effectiveness) and flushes the kidneys. The intensity of the treatments seems to have increased throughout our week here. Our only encouragement for the following cycles when we have to return are the words of our nurses and doctors alike saying that the first cycle is the toughest to endure.

Tomorrow we come home to a different world. The mask Henry must wear out of the hospital is a looming barrier to our departure, but we're banking on the motivation to leave will be sufficient. He will have to wear the mask if in a crowd, near construction and in the car unless we're recirculating the air. While he won't have to wear it at home, to reduce the risk of infection, we cannot have live or dried plants in the house and must wash hands diligently when handling food, using the toilet, and coming in from outdoors. We must discourage visitors. If he gets a fever, we'll have to head immediately to the emergency room. We've lamented the change this will require in our lives, but are prepared to accept our new reality to ensure Henry's health.

Making this all just a bit easier has been the support we've received friends and relatives from coast to coast. Today Maury stopped by with a list of the offers for help. I was astounded. I cannot find adequate language to express the depths of our gratitude and thankfulness. You humble us with your generosity. I've never been real good at accepting help but the intensity and scale of this has forced me to see and accept our interdependence. So I say thank you. Directly or indirectly, each gesture aids us in providing the best care we can to our family and to Henry. We will try to be gracious recipients and sincerely hope someday to be in the position to pass on your gift.