Archive for February, 2013

As I waited for the hospital to call last Monday to tell us whether Jenna’s blood counts were high enough for her next round of chemo, I was so hoping they’d say, “Jenna’s completely healed! You don’t have to come back again – EVER!” But, alas, that is not what they said when they called an hour and a half before her 3rd round of chemo was scheduled. Her blood counts were high enough and chemo was a go. And so after a shuffle of last-minute packing we were on our way to the hospital for Round 3.

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It doesn’t take long after chemo for Jenna to bounce back and act like a “normal” toddler would – she is so resilient!

Round 2 in January went much like Round 1 in December – 5 days of chemo, followed by a blood transfusion (or 2 or 3) and a rash, then a return trip to ER with a fever within 30 hours of being discharged. Based on this pattern, as Round 3 approached, surprisingly, I didn’t feel the dread I did in previous months and only felt sick for a couple of days earlier, not an entire week. I think partly because I’m getting used to the routine, and partly because my sister spent a morning with me in my studio under the guise of my making pillows for her, but really to make me laugh a lot. Honestly, I haven’t done anything in my studio since December except patch the knees of my son’s pants, so I had fun on both counts.

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Cutting out fabric for pillows – I should have taken a picture of my sis who was lounging behind the camera. = )

Now we are home again after completing Round 3 of chemo. They reduced the amount of chemo drug she received by almost 30% in hopes of it being easier on her liver, while still being effective. So we were home within 4 days and she didn’t need a single blood transfusion before we left! We’ve been home for almost 6 days now (woohoo!) and no fever, no rash. She is looking pretty jaundiced again but seems to be okay otherwise. What a trooper my sweet girl is!

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Sporting her new PJs with the glow-in-the-dark skeleton = )

I had a long talk with Jenna’s main oncology doctor, Dr. Fluchel, before Round 3 started and he said they really don’t know for sure if the chemo is working. I mean, her skin has cleared up amazingly, but her liver lab results are still quite high and so, as he put it, it’s a “tricky situation”. Are her liver labs high because the LCH is still active or because of scarring from the disease or chemo or both or just distress from the chemo which will improve on its own? If it doesn’t improve on its own, she may need a liver transplant, but that remains to be seen. They just don’t know and, while it’s often scary to hear, I really appreciate their candor about her condition. In early March Jenna is scheduled for a liver biopsy and bone marrow biopsy and they’ll attempt to determine the reasons for her high liver labs and where her treatment will go from here.

During an hour break from her feeding tube, which she's had in with only very short breaks for 5 months, we find we hardly recognize her!

During an hour break from her feeding tube, which she’s had in with only very short breaks for 5 months, we find we hardly recognize her!

What I’ve noticed this month is how often I make this about me while it’s Jenna who is actually experiencing everything firsthand. She just goes with the flow. She is so resilient and bounces back so quickly, she has little to no memory of what has happened before so has no apprehension or worry or fear about what is to come. She is amazing! I, however, regularly worry myself sick, and, even while I try to stay in the present moment, often feel afraid, even terrified occasionally.

My self-centeredness was so plain to me last week when a nurse asked if they could change out Jenna’s feeding tube one night earlier than it was scheduled to be changed. Did I think about how late it was, how tired Jenna was, and how her fatigue would affect her? Nooo. Did I think about how uncomfortable it is for her to have the old tube pulled out, all the tape pulled off, and the new tube forced into her nose and throat while she was being held down? Nooo… No. I thought about how hard it is for me to listen to her cry and scream and gag while they change the tube, how hard it is for me to hold her down while they push the tube in her nose, down her throat. And when I heard myself answer the nurse, “Can I think about it? It’s so hard on me!” I was appalled.

On the other hand, there’s no denying my side of this experience is hard too. I’m the one who stays in the hospital (and at home) with her 24 hours a day, the one who is with her during the home nurse visits and clinic visits when they draw blood and she cries and screams, through all her treatments and transfusions and medications and procedures. Sometimes my husband is there, but often it’s just me. It is hard. I don’t think anyone would say it’s easy and I’m probably the only one judging myself so harshly.

Perhaps instead of judging myself, I can recognize without self-pity or judgment, that yes, this is one of the hard parts of our lives, and that, like everyone else, I’m doing the best I can. Perhaps I can be compassionate with myself (and others), forgive myself (and others) the times I am not what I would like to be, and to recognize the many, many times that I am strong and brave, loving and kind, generous and gracious. And perhaps, just perhaps, in seeing how amazing Jenna is, I can see that I’m amazing too.

(To read about Jenna’s healing journey, it begins with this post)

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