Saturday, December 1, 2007


True to his current trajectory, Henry had his best day at the hospital yet yesterday. The most difficult part was getting his weight. It was the first thing that had us do and he was just not going to take his coat off. After that though, he played in the playroom they have at the Oncology clinic while he received his dose of G-CSF. We've given this to him before, but it was only over the course of 20 minutes. Now they believe that a longer exposure over 2 hours will have greater efficacy. So we sat and watched Dora and he pretended to talk on the phone to Mommy and his sisters. Altogether a very easy, gentle day for all involved. In fact, something I never thought would happen, Henry waved and smiled at the Oncologist and nurse today. He continues to surprise us with his adaptation to the extremes of his situation.

This morning the home nurse came to instruct us on how to administer the G-CSF at home. Its clear why the home nursing is an industry. The room stays are by far, the majority of the cost when we see the itemizations from the hospital and insurance company. Despite the thousands of dollars of equipment they lend us and the nursing visits, it is clearly more cost effective - not to mention more comfortable and humane. Henry calls this time "being 'hooked'", like 'hooked' to his 'tubes'. He seems to prefer sitting when he's hooked, but today he was more mobile. We put his medicine pump in a dog backpack that was given him recently to hide it and make it more portable. We only hide it to keep him from having to remember what's going on. He doesn't really seem bothered by it all that much. He played on the floor for a while with a toy bus and a play kitchen mixer; he walks to the bathroom with some help and also aided Mommy in wrapping presents.

I'm not sure if its easier or harder awaiting chemotherapy this time. To a large degree we know what to expect. Repeating what we've done isn't pleasant to consider, but I suppose its slightly better than not knowing. Looming large is the end of this cycle at which we will have an MRI of Henry's brain and spine to see how receptive the cancer has been to the therapy thus far. There are obviously gradients of the answer to be found from that test. The prognosis can change significantly based on that outcome.

Later today, Tara is going for lunch with the women in her family - a long-standing tradition. I will take the girls late this afternoon to a soccer game in, of all places, Baltimore. This should constitute some enjoyable time to spend relaxing with them and some friends for both Tara and I today.


Anonymous said...

I am so glad things went well yesterday for Henry. I'm always thinking of u all. Bryan, again thanks so much of the updates. Henry, I'm glad to see ur smiling face, it puts a huge smile on mine and I'm sure it puts one on mom and dads face too. Thinking of u all daily. Hope u have a goooood weekend.


Anonymous said...

Henry, you and your family are in my thoughts and prayers as you all go through this difficult time. I am so glad that you have time to just be a boy. It sure looked like fun driving "cruckie" into the car. And a safe way to let out some frustration too. I bet there are many adults who wish they could do the same. Keep up the fight.
Kim Maynard (Bobbie Poole's daughter)

Anonymous said...

Great to hear he seems to be adjusting better to the hospital surroundings when he has to be there. Glad you can enjoy some time with the girls and Tara with the other "girls". We are wearing our bracelets
and will pass them to some of my coworkers that have been keeping updated on Henry.

Cousin Susan H.