Archive for January, 2013

My little Jenna and I are in the hospital again this week. I didn’t feel well a lot of last week – neck and back pain, headache, nausea, dizziness, insomnia… do you think maybe I was stressed about this? Definitely…

In early December Jenna’s condition was re-evaluated. While she responded well to the first 12 weeks of outpatient chemo, from September to November, she didn’t respond completely. Normally they would transition her to a maintenance level chemo, i.e. the same chemo drug given less often, but the rashes on her head and in her ears returned around the 10th week of treatment, and her liver still showed signs of distress, so they couldn’t make this transition. Instead they decided to change to a stronger kind of chemo, called Clofarabine. She receives 5 days of this drug while in the hospital, then is monitored from home for 3 weeks, then back again, etc. for 6 months.

In mid-December she spent a week in the hospital receiving her first round of Clofarabine. The first day was nothing short of awful and I thought if the rest of the week or month or year was like this, I didn’t think I could get through seeing her so, so sick. But they were able to give her medicine to help with the side effects and the rest of the week went relatively well, much better than we anticipated. She was even out in her little walker thing, bringing holiday cheer to all who saw her.

Six days and a blood transfusion later, she was discharged, only to return about 30 hours later with a fever and strange rash from her chin down. She was re-admitted to the Immune Compromised Unit at 4 am, only 8 days before Christmas. We were told her white blood cell count was zero and we should expect to stay in the hospital for at least a week, probably more, while her blood count rebounded. They wanted to tell us we’d be home for Christmas, but didn’t think it was likely. The rash they decided was a reaction to the chemo drug and over a few days it faded, along with the fever.

Four days after re-admission, surprise!, they discharged her. Within 3 days, Jenna’s white blood cell count had gone from 0 to 3,700! And so we were home for Christmas and New Year’s. Hal-le-lu-jah!

We kept the holidays pretty low-key. It’s too risky to take Jenna out during flu season. Even the extended family festivities were staggered – my little family spent Christmas afternoon with my mom and stepdad, while my brother and his family, all who were sick to some degree, came in the evening after we left. I missed being with everyone, but really I’ll do just about anything to avoid Jenna getting sick and having to take her to the ER.

The holiday season brought us a tidal wave of kindness and generosity from friends, neighbors, family and strangers alike. My stepsisters and their in-laws adopted us for Christmas, brought gifts and food and good cheer. What a blessing!!! Aside from the expense of Christmas, we just didn’t have the energy or time needed to get gifts. My husband and I were just blown away!… Neighbors brought freezer dinners… A business group my husband meets with each week treated us to several weeks of housekeeping services… People I didn’t know dropped gifts off for our children… Others sent money to help with our extra expenses. It seemed everyday something new and unexpected showed up. I’ve never experienced anything like it and there are no words to express our gratitude!

jenna again dec 4

So 2012 ended on a pretty good note and now that the new year has begun my husband and I have reflected on our accomplishments last year and set goals for the coming year. In past years I have had a decent list of accomplishments and goals, but this year the only accomplishment I could think of is that we all made it through the year together. And the only goal I have for 2013 is that we all make it through this year together as well (and of course Jenna is cured and treatment finished. That goes without saying.) I have no goals for my business this year either. I love my work, but it is a pretty low priority right now. That’s just the way it has to be that way and I hope that when all this is over I can bring my business back to life.

In the meantime, I don’t think too much about it being a new year. I tend to think of 2013 as a continuation of last year. I still don’t think too far out into the future. Trying to figure out what to make for dinner (and how I’ll manage to do it) is enough to bring on a mild panic attack (no kidding) so I really have to monitor my thoughts. When I do think about the future, I imagine us on a beach, Jenna in a little jumper and bare feet, silhouetted by the sun reflecting off the ocean, laughing and chasing her big brother, my husband and I watching them, delighted, our toes in the sand, happy and healthy and together. And I think about Jenna grown up, not doing anything in particular. Just grown up. And that makes me feel happy.

(To read about how our journey with Jenna began go to this link.)

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