coping

Good Humor

/ Evan / 4 Comments

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.

The Story of Zoe’s Birth

/ Evan / 3 Comments

Zoe at 10 days old

Evan and I, like all parents, wanted to choose just the right name for Zoe.  We spent Thanksgiving with family running down lists of potential names.  Annaliese?  Natalia? Madeline?  Brynn?  Evan settled on the name of Zoe before I did.  But it became clear that Zoe was the right name for our baby and so we decided to name her just that.

We hung her stocking at Christmas in anticipation of her arrival.  She arrived the day before my birthday and in between two large snow storms.  I had been preparing for the big day working hard mentally to come to terms with the pain of childbirth.  I had wanted to deliver my first child without medication but lost my confidence to manage the pain during the delivery process and asked for an epidural.

Determined to have Zoe naturally I talked with several friends who had delivered naturally themselves.   It was doable and I had to figure out what was going to work for me.  Moving around, deep breathing and distraction were especially helpful.

Prior to going to the hospital Evan and I took some time with Maya to explain to her that Baby Zoe would be arriving soon.  We let her know that when the phone call came we had to go to get Zoe.  Soon after Evan’s mom went into another room and called Evan on the phone and Evan spoke where Maya could hear him.  “Zoe is going to be coming soon?  We need to come to get her now?”  Maya responded, “Bye, Mommy.   Bye, Daddy.”  Then she looked around and called out in a loud voice, “Zoooo-eeee!” as if Zoe would appear at any time.

In hindsight I guess she could have.  Evan called the nurse on duty to ask how long we could stay at home safely as I had been having contractions for most of the day but they had just settled into a rhythm a few hours prior.  The nurse spoke with the doctor who had delivered Maya and who exuded the calm that comes from delivering thousands of babies.  He said that we could stay at home  until contractions were 3-5 minutes apart.  Trying to stay out of the hospital for as long as possible we arrived for check-in when contractions were 2-3 minutes apart. Cutting it a little closer than we had  intended things moved along quickly from there and Zoe was born four hours later.

She was bright eyed and incredibly alert upon delivery.  When our eyes met I could tell she knew me instantly and we fell in love.  She took to nursing naturally.  And so began our relationship.

Zoe flew through her well-baby check-ups and her pediatrician was so happy with how she was doing.  Her color was great, she was calm and easy to soothe and she was a solid eater.  No weight loss issues, no problems with jaundice, etc.

Evan and I were so happy to have our family intact and healthy and talked of so many dreams of the future.  We discussed family trips, holiday rituals we wanted to establish, books we wanted to read together and movies we wanted to watch during family night when the girls were old enough.

And then that nasty illness moved through our household and the rest of the story is history.  And so here we are.  Very grateful Zoe continues to fight and very grateful we chose a name that means “Abundance of Life.”

The First of Many Firsts

/ Evan / 2 Comments

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.

Getting Through

/ Evan / 3 Comments

Evan has been encouraging me to contribute to this blog my perspective as a mother. During this upside down time of our lives Evan has been coping through researching the illness and treatments and writing about it. As Zoe’s mom, I have been focusing on the caretaking aspects of things, like making sure Zoe is well fed, eating well for her, talking and playing with her and holding her as much as I can.

One of the worst aspects of this experience is knowing the invasive procedures that Zoe has faced. Before my daughter had her central line put in she went through numerous blood sticks in her body and feeling helpless to console her I sang to her while she cried. The blood draws, the spinal tap, the bone marrow biopsy, the operation to insert the central line as well as all the medication she has received in her body somehow Zoe tolerates and comes through the experiences. It is disheartening to realize that she could go through all of these procedures and there are no guarantees with this illness and that it is very serious and life-threatening.

Despite the challenges we face at this time we make sure to savor our moments together. Zoe sure smiles a lot for a baby who has been as ill as she has been and her smiles mean everything. Holding her is healing for both of us.

It is difficult to feel like I cannot be there as I want to for my older daughter, who definitely has had her upsets with this experience and who regularly asks me when I am coming home. It feels awful telling Maya goodbye and that I will see her tomorrow and I feel sad that I am not at home to help her through her bumpy nights.

We make our time together count. I took Maya to a birthday party yesterday and she spent time with one of her favorite friends. We sing to Simon and Garfunkel when we are driving to and from various places. We play on the hospital rooftop playground where a few days ago Maya had her first experience with Red Light Green Light and shrieked with laughter as she ran circles around the older kids playing the game.

Time with Evan is different and confined to brief stints in the hospital room. Our first priority is our children and so we understand that we will be spending less time together than we would want. We look forward to having more quality time together in the near future.

We have received a great deal of support from family and friends. This has been overwhelming and has helped us to process and endure this devastating experience. We are so grateful to have such kind and caring people in our lives