It’s hard to believe that it’s already been 5 days since Jacobs rotationplasty. So much buildup towards it, and like I’ve written before, time keeps marching on. 5 days into healing. 5 days closer to walking. 5 days closer to being cancer free.
Jacob is still doing relatively well. The doctors are very pleased with the progress so far. Today his catheter and the leg drain were removed. These are both good steps. Now that he has been off his epidural for 24 hours, the blood thinners have been started. Jacob is still struggling with nausea, and today could not keep any food down. The doctor is switching the pain meds from oxycodone to hydromorphone to see if that helps the nausea settle. The pain continues to be managed well, and on the pain scale of 1-10, the highest he has hit is a 5, but averaging only 1-2 for most of the day and night.
The physiotherapist wanted Jacob to try to stand today, but he was unable to. He is too weak to hold his own body upright in just a sitting position and needs me sitting behind him to hold up his back. We tried together for about 10 minutes to stand him up with a walker but the pain was too intense and he couldn’t figure out how to move his body to get into a standing position. This is absolutely heart breaking to watch as he struggles. I can see the defeat and frustration in his eyes. It hurts so much to be unable to take the pain away. He knows the road ahead is long, and will require an immense amount of patience, and all I can do is hold him through it and encourage him.
Evan continues to struggle mentally with everything that is happening. He does really well when I am home and near him, but his little brain is the type that overthinks and worries constantly. I am continually thankful that Noah and Kaleb remain unaware of the reality and immensity of the situation. Noah and Kaleb thought that Jacob’s new leg was “pretty cool” and a “nice little leg.” They both only took a few seconds to look at his leg and then asked to watch TV. Totally unphased. If only we could all be so innocent…
We were really hoping to be moved to Children’s Hospital today but the transfer didn’t happen, so one more night on the ratty recliner listening to people moaning and puking and yelling. The atmosphere here is significantly different than at Children’s! It does feel a bit odd being the only child in the hospital. Jacob and I are starting to have a bit of fun with the quick expressions and flashes of surprise when new nurses or staff see his leg for the first time.
Today I found out that a friends son has only a couple weeks left to live. He was diagnosed only a few weeks after Jacob was and we have walked some of the road together. My heart is aching for them, it’s unfathomable – and it’s another reminder again that cancer sometimes is not beatable. That it does sometimes take over and not respond to treatment, sometimes relapses. And it reminds me again how much I despise cancer.
Hold your loved ones close, always. Tell your friends and family they matter to you. We don’t know when our time on earth is up.
Psalm 139 : 13-16