Dear Friends,
I thought I would write a post to add to the updates that Naveen and Crystal are providing. While Naveen has been doing a great job of informing everyone about what has been happening at the hospital, I thought it would be helpful for friends and family to truly understand just how much Keira has been affected by this, and to appreciate just how much she is improving.
In short, Keira has experienced two critical diseases - Neuroblastoma, a cancer of the nervous system, and OMA, an auto-immune disease. We are hopeful that the Neuroblastoma has been removed from Keira's body through last week's surgery to remove the mass. The OMA, however, is something that will likely stay with Keira going forward. It is not easy to write this, but the fact is that Keira's OMA will likely be a life-long challenge that will have to be managed through drug treatments and could potentially require special care and attention
Keira has now begun a steriod treatment and is showing some signs of improvement. Before the steroid treatment, Keira experienced uncontrollable shaking of her body, a lost ability to keep her balance, deteriorating control of her eyes, and severe mood swings. At times she was not herself. Even with the steriod treatment, Keira is prone to episodes of inconsolable crying, minor shaking, and a continued inability to walk. The likely side effects of the drugs are also tough. She will be susceptible to mood swings, sleeping difficulties, and a decreased ability to fight infection.
But she is getting better by the day and has retained her essence, her soul. She is still Keira.
It has been very, very painful for all of us to see Keira battle the cancer and now OMA. But she has been tougher and more inspiring than anyone could imagine. She is living proof that kids at her age can demonstrate a personality, and hers is clear: one of courage, persistence, and faith. It has been as tough to see Naveen and Crystal go through this. But their love and strength is something for which words won't do justice.
The next few weeks and months will not be easy. Naveen, Crystal, and Keira will need to somehow discard their perceptions of themselves, one another, and their life expectations and discover these anew. There is no doubt that they can, but they will require every ounce and hour of our love and support as they do this.