Kindergarten!

First day of kindergarten!

So school has started. Today was only Soph's 3rd time at kindergarten. She's on a Mon-Thurs schedule to start with, anticipating fatigue, and we kept her out most of last week (except Thurs) b/c her counts were low. She went today, even though her ANC is low, but it seems to be on the upswing (83 last Thurs, 95 on Mon). Speaking of low counts, we might avoid an unplanned hospital visit this cycle for the first time in 2-3 months (no fevers yet, and ANC is hopefully increasing) *knock on wood*

Soph's kindergarten start wasn't necessarily what we had imagined if you had asked us a year ago, with multiple meetings with support services like psychologist, social worker, OT/PT, speech, nurse, all culminating in an IEP meeting tomorrow. Part of me sees her every day, her drive, curiosity, memory, and aptitude for learning, and I want to just tell everyone that she's normal, that she just wants to fit in and not be treated special. On the other hand, I am thankful that there are services available for us to help her be successful. I'm hopeful for her to love school, and make great strides this year.

It's been 10 months since the diagnosis last Dec 1, and it's becoming harder to remember what life was like before cancer. Always being extra aware/cautious of Soph walking around, where she's going, what germs she might get. Getting so excited when she takes bites of food, and keeps it down. Waking up 3-4 times each night, not just to carry her TPN bag to help her go potty, but now to administer anti-nausea meds thru her port. This is our life. I'm not bitter, really, more just wishing, wanting to get thru this. I barely recognize what Soph looked like with hair, and some meat on her bones.

I know that getting to the 9th cycle of chemo doesn't mean this is over. The periodic MRIs are a nerve-wracking reminder that it's never over. We still also have to deal with the unknown late effects of radiation, which really just deflates me. Wean her off TPN, get her back on food, get her weight back, work on her coordination. All of these things I am looking forward to, but know it's going to be hard work all the way thru. On top of this, we'll have baby brother inserting himself in the middle of this. I have no idea how we're going to get thru this. Nov 1 is the due date, and we are getting closer and closer. How will we handle unplanned hospital visits, stress with my job, trying to have a "normal" 3-yr old life for Selah, and taking care of a newborn....it's all very scary.

Sept is Childhood Cancer Awareness Month. I sometimes get callous to all of the awareness months, like Asian Awareness, and every illness/disorder that has its own month. Obviously this one hits home for us, since we are very aware of childhood cancer. If you follow our facebook page (www.facebook.com/feistyfightersophie), you would have seen a link for a local charity called Aidan's Army, who are highlighting stories of childhood cancer each day this month. Like it, follow it, read it, and remember that there are families like us that live on the edge of those "worst nightmares." The one for today, Max's Story, really will crush your heart. It is the proverbial every parent's worst nightmare to lose a child, and it's heart-wrenching. No other way to describe it. I am at a place now with Soph, where I refuse to think or consider that worst nightmare, even though I know it's a possibility. Still more work to be done in my heart to "release" my lovely daughter to God's will, whatever that will might be.

Chemo #6 is later this month, 9/24-26. This one will be regimen B, again, with cyclophosphamide (cytoxan), which really threw us for a loop last time around in June. It cleared out the rest of the peach fuzz hair, dropped her ANC to near 0, and she had a fever for about 4 days, which resulted in an unplanned hospital visit. It was not fun. So we are not looking forward to this one. But it's one more step closer to finishing treatment.