Stop and Go
Zach is doing great. The swelling is mostly gone with just a little yellowing from slight bruising. He’s smiling more and starting to coo, as babies do 🙂 He is so sweet! He’s back to sleeping through the night ( I know, don’t hate me!) We go in and out of processing this new reality. Life keeps going, as I know you all know. It makes it strange to deal with these kind of things because you can’t just put life on hold to process and reflect and grieve. This week, for instance, I had to switch our clothes from winter clothes to summer clothes – a daunting task for 6 girls plus myself (in between a gazillion sizes since giving birth not long ago!) Praise God we’re through it (98% anyway) thanks to some of you helping out here 🙂 Thank you! Family is in town, celebrations are to be had, school work has to be checked…and then there’s Zach, with only one eye now…It just seems incongruent.
I know any of you who’ve experienced any kind of loss or life changing reality can attest to these thoughts. We join your ranks! We are trying to tune in to the process and talk about it, cry about it, as we need to in bits and pieces, taking one day at a time with whatever that day gives us. But this too is what it means to live through the human experience. And we mourn with those who mourn and rejoice with those who rejoice. This is the way of the Body of Christ. We are so blessed to do this with you, our brothers and sisters.
A few facts
This being a new journey for us, I though I’d share some of the things we’ve been learning about retinoblastoma:
- There are about 10 or so cases in MI per year – U of M will see about three of those. Zach was their second this year.
- There are about 300 per year nationwide.
- RB most commonly hits infants and children 7 years and younger.
- 1 in 18,000-33,000 children will get RB
- RB is fatal if left untreated.
- The smaller the tumor and the older the child the easier it is to try to eradicate the tumor.
There are other pieces of information but I thought those points were interesting.
I still can’t believe I have a baby who’s fighting cancer. That just seems totally surreal to me. As is the fact that he now has only one eye. I guess I can’t wrap my brain around that one. It’ll just have to happen in it’s own time. Though I remember the thought I had in the room we stayed in that night after his enucleation (removal of the eye.) There was a sign on the bathroom door in the room that said something about washing your hands within 24 hours of chemo. And I thought to myself “why would there be a sign on this door about chemo? Chemo is for people with cancer.” And then it hit me, I was on a cancer floor – all the kids on that floor had cancer. And my first thought was, “what are WE doing here? we don’t have cancer.” But we do. And I have to come to terms with that.
I think part of it is because in our case, this RB presented itself first and foremost as an opthalmological issue, not an onocological issue. We went to an eye doctor not an oncologist. Zach had his eye removed not chemo and radiation. So in my mind, and because it happened all so quickly, we bypassed the “cancer treatment” reality. The fact that it was so developed and its location in the eye, and Zach’s age made the treatment protocol enucleation rather than typical cancer treatment. Many who have it first treat it as cancer and often end up enucleating at the end of that battle. But it is cancer and we need to watch the rest of his body for any signs of cancer religiously for the next couple years. I only pray we removed any vestiges of it for good by removing his eye.
We remain fellow pilgrims on this journey of faith,
Tim and Sarah