Day -13: Zoe is 5 Months Old!

Hard to believe, but Zoe is now 5 months old. We’ve spent 3 months in treatment for her disease since she was diagnosed right at 2 months old. Amazing. I’m sure that anyone who has had a life-altering event occur suddenly can relate, but it’s hard to remember what things were like before Zoe was diagnosed.

We are so grateful. Grateful that we have Zoe in our lives. Grateful that we happened to have a pediatrician who trusted his gut and the signs and sent us into the hospital earlier than we normally would have been. Grateful that there was someone on staff when we were admitted who had seen this rare disease and made a call to start treatment before it could do damage Zoe could not recover from.

Grateful that we have family and friends who have been supporting us, we simply wouldn’t know how to handle this without them. Grateful that we have a toddler who is so wonderful and agreeable that she is weathering this so well. Grateful that Zoe can be cured, and that we have a world-class transplant team in our backyard who know how to cure her.

We spend a least a part of every day thinking about being all back together under one roof and healthy, myself, Michelle, Maya and Zoe. Here’s hoping that day comes soon.

Good Humor

Wanting a snack after our lunch yesterday, Evan trekked to the hospital snack shop where he called me with ice cream options. Klondike bar? Ice cream sandwich? Good Humor Bar? Nestle Crunch bar? Wait. Did you say a good humor bar? What on earth? How could I resist getting a good humor bar during Campath week? What the heck, I’ll try it. We could all use some good humor.

It was packaged as a strawberry shortcake bar, and I ate it a little late so it was somewhat melted. One of the nurses had come into our room and was talking with us, and it seemed rude to eat ice cream in front of her. We talked, and the bar melted.

Eventually I found time for it. I looked at the label for jokes, not really expecting to find anything. There was an ad for the 10,000 winner “sweet stakes” (a pun!) though, check your stick to see if you are a winner. I pulled out the stick that I had carelessly wrapped in the wrapper. “Try again. Free chance to win a prize.” So, we hadn’t won anything. Where’s the humor in that?

So I wondered, where is all the good humor in this thing with Zoe? It feels like we are running a marathon, even a triathalon, and the task in front of us has felt so incredibly daunting at times. There have been days where the weight of it all has felt crushing.

We take things one step at a time and seize upon the good things. Good lab reports. Coos and playfulness. Pleasant interactions with medical staff. A fun email exchange with a friend. A heart felt visit or phone call.

Zoe’s beautiful quilt, made by a friend who chose colors so bold and beautiful it would make anyone smile. Whimsical interactions between Maya and the butterflies in our yard at dusk as she chases them, misses, and they fly away and then return to land on her hand, her shoulder, her hair. Little wonders all around.

How can anyone bear the weight of hardship without taking pleasure in the little things? Is it irreverent to look for the sun in the middle of the night? Do we choose to sink into bitterness for the hand that we have been dealt? Those “little things” that make up our lives are the things that save us. We are grateful for them all. Grateful for those moments, and grateful that we continue to have Zoe in our lives.

Fears

“Are you having doubts?”, Michelle asked me this morning on the way to the hospital.
“Not doubts, fears,” was my reply.

And that’s true. Not doubts, fears. At this point we have done all that we can, all that was in our hands to do, and we have to trust the professionals to do their part.

My fears are many at this point, but I try to keep them reasonable so that I can be fully present and able to help with everything. I’m afraid for Zoe’s life. Afraid that she will make it through, but with a neurological disability. Afraid of some unknown, unforeseeable outcome endangering our family’s ability to remain intact, stable, happy.

I would guess that these sorts of fears are normal and expected, but they seem no less overpowering at times, no matter how much I attempt to step back from them intellectually.

We’ve spent a lot of time drifting toward this day, the day we start conditioning, but it still doesn’t quite seem real somehow. Every day blurs together, and it never really stops being worrisome. We’ve established a new baseline for our anxiety, and that is our new reality.

One day it’s general fussiness and fears that something major is behind it, another it’s a bit of clamminess after a nap and anxiety that a fever is coming.

It never really stops, the days come one after the other and each brings a reminder that it’s not over until it’s over. Not over until she is cured.

Thankfully that day will come soon.

The First of Many Firsts

Zoe had her third spinal tap today.  I carried her to the “Sedation Suite”, as it is called, where the anesthesia is administered and the procedure takes place.  We were scheduled to have the procedure at 10 am, but it did not occur until 11:30 am, and so given the NPO order since 6 am, she was a very hungry and upset baby prior to the spinal tap.

While I was walking the floor trying to console Zoe I couldn’t help but notice in the window the other sick children in the area.  They were very young and I saw another child that looked to be about Zoe’s age.  The suite area was very busy.

The anesthesiologist arrived at our room and sat at the head of the stretcher where Zoe laid  during the procedure.  A nurse and nurse practitioner stood at either side of her, while I waited near the stretcher watching what took place.

After Zoe was sedated and the nurse practitioner performed the lumbar puncture, the physician told me that my daughter was beautiful and asked if she was my first.  I told him that I had a two and a half year old daughter as well.  I told him she was very healthy and said Zoe’s disease was very unexpected.

“Zoe will be healthy, too,” he replied.   He offered this without hesitation.  I found his words profoundly comforting.  The confidence in his voice inspired confidence in me.  I got the sense that procedures such as Zoe’s were routine for the staff and children could even thrive afterwards.  A photo bulletin board on the wall supported this as there were probably fifty or more photos of children who had undergone treatment of some kind and many of whom were smiling and looked to be living normal lives.

Once the LP, as the staff call it, was complete,  I sat on a stool next to Zoe as the stretcher was angled downward.  This occurred so the chemotherapy that was injected into her spine could circulate around her brain, killing cells that could do damage to those areas.  Zoe  stayed this way for twenty minutes, as she had the previous time.  I gazed at her while  she slept and held her tiny, pale hand.  Despite the invasiveness, these procedures are saving her life.

Yesterday I was with Zoe when she laughed for the first time.  Actually it was akin to a chortle.  Very cute and very infectious as I laughed, too.  It is nice to imagine that the smiles and the laughs are the first of many of Zoe’s tender firsts.

I can’t wait to see all of them.

“You’ve Got to Have Faith”

I spent part of the morning getting Grizzly, our (now) huge pound puppy, up to date on his shots and his yearly checkup. I was reminded how often we seem to connect with people as a result of Zoe being in the hospital — it’s happened to both Michelle and I in the past few days with different circumstances, different people. It happened to me again this morning.

I was discussing Grizzly’s treatment and they were trying to encourage some treatments/medications that he really didn’t need or which we already had at home left over (ear cleaners and such), and I explained that we really didn’t want to spend money on things that weren’t absolutely necessary right now due to a child in the hospital. I left it at that.

After the Vet left, the Nurse, who Grizzly really liked and who seemed very nice, explained that she understood probably more than we could realize, but didn’t elaborate.

She continued on doing his billing run down and explaining his shots and medications, and at one point, sensing her continued interest, I explained that Zoe was 2 months old when she went in, is almost 3 months old now, and that it was likely to be a long term thing for her. She looked away, back to her computer screen in the examining room for a moment, then back to me with a much more serious look on her face. Until that point, she had been really sweet and upbeat, part of the job I’m sure, but that seemed to fade for a  moment.

She said, “You know, you have to have faith. It doesn’t have to be God, but it has to be something, you have to have faith.”

I smiled at her and she continued, “When I was little, I had Grand Mal seizures, and the doctors told me I wouldn’t live past 16, if I even lived that long. I’m here today because my mom told me that I would live. I really believe that I wouldn’t be here today if my mother hadn’t had faith in me.”

I would guess she’s around 28 now.

There is a personal barrier that being really really sick, or having a sick child, seems to cut right through. People seem to stop putting up their brave face or their happy face or work face, drop their guard, and connect to each other much more quickly. It’s easy to spend a great deal of our day to day insulated from that harsh humanity and emotion that can come from these illnesses, but I’m increasingly realizing it’s those connections that are most valuable and real; I’m not sure why we work so hard to put them aside or conceal them.