We sprang Colin from the joint today. He returned home on a bright and sunny afternoon. He didn’t seem very excited about it until he actually saw the car — then he cracked a big grin. It was the best car ride ever. 🙂
He generally seemed less frustrated today and enjoyed sitting in a high chair eating both at the hospital and at home. This is good for his body (he has to use his muscles to sit up and use his hands, or at least his left hand, and the gravity does help his bowels work better) and his mind, since he can exercise his independence and feel more human.
Returning home is also bittersweet for us, however. While we are delighted to bring him home and boost everyone’s spirits, this is a very different version of Colin (and not just the extra girth). He is not nearly as expressive or talkative and is not mobile at all. We do physical therapy with him, which primarily consists of standing (100% weight bearing) and walking (supported to varying degrees). But even with persistent efforts, we will not get him walking independently during his sojourn at home.
There is no doubt that the Colin that we know and love is in that stitched-up noggin. He chuckled when we set him up in a chaise lounge and positioned bolsters under each arm to help support his body. He loves lounging and watching TV, which is something he can do without confronting the frustrations of his body’s deficits.
We seem to be able to feed him less at home since there are more distractions. Although it is good that he has a healthy appetite, his bulk is not helpful for his general feeling of discomfort or his mobility. Also, we are always aware of the input-output equation and feel that it is slipping out of balance again. No day has gone by poopless, but some a bit under-pooped.
Perhaps more fundamentally, we are concerned about the encroachment of the tumor. It is possible that the pressure on his cervical spine and elsewhere has increased or changed. The tumor can shift and it obviously grows. There is an element of urgency to the next surgery, yet we also have to live in the moment and enjoy his time at home. This is all very difficult to balance but necessary.
We return for an office visit on Monday afternoon and then they want to do another full MRI (anesthetized) on Tuesday if possible. In the meantime, we relish our time with our whole family at home. Colin needs to know that he is supposed to come home when he is better. We sense that he does not admit for fear of reliving the confusing experience of the last surgery, which was done to relieve the pain.
All in all, he has been a great patient and has adapted well to his circumstances. His frustrations seem like a good thing and we hope that they will fuel his recovery. Perhaps he senses when he needs to conserve his energy rather than expend it.
Colin kissed Mom and Dad for the first time in many days today. We had felt that he was withholding his affections out of resentment for his infirmity and confinement. It is unclear how this will play out in the future, and whether he will get more angry at us or come to understand that we are only putting him through treatment in an effort to help him.
Do young children who endure long and difficult treatment regimens bear the psychological scars of this experience? We are certainly willing to absorb his ill will in order to save him, and at this point we have no choice. Our actions thus far and in the imminent future are very clear: immediate action is required to save Colin’s life.
However, depending on the tumor’s response to treatment, we may end up with a more confusing array of choices. Connecting to other parents of children with ependymoma, we have discovered how arduous that battle can be. Those with recurrent illness face batteries of treatments and surgeries to thwart the enemy. Yet they are also able to eke out priceless time with their children at varying levels of functionality.
Lower extremity paralysis can seem like a low price to pay for more time and the chance to fight another day. Toting Colin and his extra poundage invoked the image of a future of transporting his growing body around. We would welcome the opportunity. Where do we sign up for a van with a wheelchair lift?
If there were a devil to sign contracts for this sort of thing, we know there are many deals that would have been struck to save our beloved little boy. Today, we hope for the best and grasp every moment that trickles by. For that, we don’t need to transact with evil but embrace Colin’s goodness and try to harness all of the positivity that flows our way.