Sunday, July 10, 2011

A Little More Isolation

Today I need to repent. No need to squirm in your seats. Sorry, folks, it's not that juicy.

As I sat in church today, knowing I haven't blogged all week, I felt a little guilty. Let me explain. I'm over the guilt of going to bed over blogging or spending more time with my family over blogging, or even indulging in a late night bowl of ice cream over blogging. I know I've mentioned in the past when there are gaps in the time frame of posts, things are good and there is nothing significant to report. I need to repent of that statement. Today I realized those are the times I need to express gratitude for blessings because it is during the times of peace that I am reaping blessings.

William's treatment this past week was amazing! Did I really just describe a crummy cancer treatment as amazing? Yikes. But it really was amazing. William was pleasant and comfortable and active. Yes, active. He actually anxiously got out of bed to go to the school room and All-Stars Room (technology room). Okay, so he went to the school room once and the All-Stars room every day. But that is a huge feat for him. He even asked to take a walk down the hall one night around 10 pm. Weird. It was a funny site to see him jump out of bed and start unplugging his IV pole and disconnecting his heart rate and oxygen saturation monitor. A few times I had to remind him he needed to ask the nurse first. But we all loved seeing him that way. One nurse said, "I've never seen him this way. It's great how he seems so normal. We don't get to see that very often." We are truly grateful for the good days, the miracle drug, Neurontin, the Ipads in the All-Star room, Cocoa Puffs and whole milk on the kids menu, attentive nurses and doctors, fogless nights in SF and a room with a view of fireworks, Jamba Juice, EMLA cream (numbs for shots), sisters who babysit, family and friends who pray for us, and a loving Heavenly Father who reminds us daily we are loved.

William's pain was very well managed this time around. He only complained of discomfort on the last night of the infusion. He probably wasn't even paying attention because he didn't realize it until right after he finished Skyping with James. Oh, the value of a good distraction! After a bolus of pain meds from the nurse and pushing his PCA button twice, he was fine. He had no fevers and his blood pressure, when it got low, remained close to the guideline parameters and usually a little movement and waking up did the trick. Whew.

The only significant complication didn't have anything to do with his treatment. His broviac, central line in his chest used for infusions and blood draws, has been acting rather finicky the past few months, making it difficult to draw blood. We often have to make William try myriads of different positions: hands up, head turned left, head turned right, lean over, lean back, lean sideways, stand, sit, jump. One time, while drawing labs at home, Ryan actually held him over his shoulder and we tried to make him upset. I know, that sounds awful, but if the problem is due to his blood pressure, being upset seems to increase the blood flow through his veins. It actually worked that time. We've had some occasional success with trying to keep him well hydrated, but that has also proven not to be a guarantee. Clotting does not seem to be the issue since it flushes successfully. A possible culprit is the tip where the flap-type mechanism is located inside his vein gets lodged against the wall, in the tissue of the vein where the blood isn't flowing as freely. Some of his labs have been inaccurate because the quality of the blood sample is not great. The last day in the hospital, we finally resorted to poking him in the arm the old-fashioned way to get accurate labs. William wasn't a fan, but he's done a lot of tough things and he gets shots like a champ. Hopefully his comfort level with this method of blood draws will improve. The alternative, like removing the broviac and replacing it with a PICC line in his arm for the remaining few months, seems more traumatic than the inconvenience of occasional pokes.

Labs were also drawn for the progress of his bone marrow transplant. As I think I mentioned in the previous post, the result from the first set of labs would determine whether the function test would be done and if the isolation precautions could end. His labs looked fantastic and William's numbers were actually higher than the doctor had expected and he's ready for the function test. Yay! Unfortunately, the doctor became concerned that the antibody infusion may skew the function test labs and it is a very expensive test. Also, when we had talked previously, he admitted he read the dates wrong when thinking we could end the isolation pending good numbers with the first test. He read the bone marrow harvest date (Aug 1) instead of the transplant date (Jan 31). Boo! Since William hasn't met the 6 month mark yet, regardless of the great initial labs, he asked that we endure the last 3 weeks of isolation before the function test and the end of isolation. Rats.

While sharing the news with Lisa, she offered encouragement (because she knows I was trying to justify ignoring the doctor's request). She compared this to the last 3 weeks of pregnancy. They are often the hardest weeks, but in the grand scheme of things, they fly by. Perhaps she's right, but I reminded her that all my babies were 2+ weeks early!

Next item of business:

How long is William's hair?

Long enough to make a faux-hawk!


  1. There's nothing faux about that smile. Love you, Will, with or without hair, but you sure look handsome. Can't wait to see you soon. And it is so great that you've been so brave for so long. Only two more infusions, and fourth grade!! Wohoo!

  2. Despite not being able to come out of isolation quite yet, sounds like great news overall. I love reading that he has more energy. Keep amazing those doctors William!