Still at Children’s

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It is early Friday morning as I begin writing this. We’ve had a crazy week. David was kept in the hospital because the pain in his leg had steadily gotten worse, and They wanted us to be able to control in on oral meds before he went home.

On Wednesday, a combination of medicines made him quite loopy, and the effects lasted long after they should have. (One of the medicines only lasts in your system for about 4 hours.) he was extremely fatigued, and barely woke when he was visited by his step mother and Mrs. Woodside. David was having hallucinations and they lasted well into the night. Based on his last MRI, it was possible that this was all from disease progression, so the doctors started preparing us for the worst.

I called David’s dad and had him bring Austin up to the hospital. It isn’t that they thought David was about to die, but more that they thought he might be reaching a point where he wasn’t as aware of what is around him.

Austin visited and then she and her dad stayed at a nearby hotel. Richard and I stayed with David, as we had been doing. During the night, David got up three times to go to the bathroom. Each time, he seemed to be a little more steady on his feet. By morning, he seemed to be back to a pretty “normal” state.

We were all sufficiently worried about David’s symptoms to call in family and friends. David had over 30 visitors yesterday. They all arrived to see a smiling David who greeted them warmly. No hallucinations. Manageable pain.

What they did see was that his eyes don’t quite follow the action like they used to. He shakes a little now, especially when he is reaching for something. He has a bandage on his head where one of the incisions from the shunt didn’t heal quite right. Overall, though, he looks pretty good.

I wish the inside looked as good. David has visible spots of cancer throughout his brain and spinal cord. His disease is in an advanced stage. David has chosen to start a chemo regimen that is an oral medication he can take from home. We are working right now to get hospice care set up so it will be there as we need it moving forward. Once that is set, we will take him home.

Needless to say, we are worried about David. He still has the same great attitude and is determined to win even with all odds stacked against him. We take our cues from him.

Last night before leaving, his friend Brian shared some advice. He told David he only has to make it through each new day. He told him that he could do anything for 24 hours. And just wake up each morning focused on that day.

I thought that was great advice, and it was delivered in a very mature way. I am so proud of these young men and women. It gives me hope for the future, even if it doesn’t turn out exactly how I have planned.

2 thoughts on “Still at Children’s

  1. Praying for each one’s needs as only God knows them. As a parent, my heart is breaking for each parent & stepparent. As a sister who lost her brother too early, I’m praying for Austin’sI strength for each day and the ability to “release” David should that time come. My heart feels like it is breaking for you, Amanda. I admire your strength through all of this, but know that there is real emotion underneath that is being controlled as needed.
    Love you all~
    Robyn

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