Tag Archives: induction

Day 25

Posted on August 15, 2011 | 1 Comment

(Transferred from our Caring Bridge)

Clinic on Friday was a relative breeze. Our nurse quickly accessed Elsa’s port, again without a flinch. Our sweet angel in the lab expedited our bloodwork (thanks Tina!) and we saw Elsa’s oncologist, who answered our innumerable list of questions for the week. Elsa got her dose of Vinchristine (one of her chemo meds) through her port and we were out of there by noon!

Her ANC (the # that tells us the current strength of her immune system) is pretty low these days at 330. A normal ANC is greater than 1,500 and when it falls below 500, patients are considered at very high risk of infection. Given her ANC of 330, we have been advised to keep her out of enclosed, crowded areas and wash our hands frequently. Thankfully, the rest of her labs were decent – no need for a red blood cell transfusion and her platelets are actually within the normal range! Hurray for no risk of bleeding!

Before I launch into any kind of griping, I’d like to say that we’ve had a string of good days. Following our oncologist’s recommendation, we have been a bit more liberal with her pain medication (it’s hard to feel like it is OK to give morphine to an 18 month old!) and this has helped make all of our lives more tolerable. Saturday, we went to a charity walk for La Leche League of Southington and it was so wonderful to do something that made life feel a little bit more “normal.” Elsa stayed in her stroller during the walk, sitting expressionless and mildly grouchy. It’s horrible to see her so lost inside her own head, but our doctors have assured us that, once she is off the steroids, we should start to see our little girl peak out of her grumpy little shell. I. Cant. Wait.

And now for a little bit of griping – just a little. Today? Today was not a good day. Today was a “my daughter has cancer and she’s miserable day.” Today was a day spent driving aimlessly while she slept fitfully in the backseat. Today was a day spent feeding and feeding and feeding her insane, steroid-induced appetite. Today was a day that I just felt sad.

Thankfully, she went to bed early though and without complaint. John and I got to stay up late (10 pm!) and have a much needed chat. We watched an episode of Bachelor Pad, which is always good medicine for whatever existential angst may be ailing the soul. I think we are both feeling a bit better.

Tomorrow? Tomorrow, we can try and make a better day.

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Day 21: The start

Posted on August 11, 2011 | Leave a comment

(Transferred from our Caring Bridge)

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In the beginning of July, Elsa started bruising. Her shins looked a mess, but we chalked it up to her being an exceptionally active, kamikaze-style, 17 month old. I looked at the other kids in her playgroup, noted that she was significantly more bruised than any other kid, but continued to tell myself that she was just a klutz.

On July 14th, I called the pediatrician to ask them about her bruises and they told us it was probably nothing, but we should get her blood checked. At this point, we had noticed some really large bruises on her hips and back, but I still wasn’t very worried. I figured, maybe she had Idiopathic Thrombocytopenia, at worst (the perils of having a nurse for a mother). I even said to a number of friends, “I bet her blood tests will come back negative and this will all be chalked up to my being a negligent mother!”

Now for the part where the mom kicks herself. Friday, the 15th, we had Tots and Tunes at the library and then I had work. Didn’t think to make a blood draw appointment over the weekend. Monday, 18th, my mom babysat and so Marta and I took that opportunity to go wedding dress shopping. Tuesday, the 19th, we took a ride up to Woolman Hill with Jesse and Sarah so that we could do some last-minute wedding planning. In retrospect, it was a beautiful last day of our old life. All this time, in the back of my head, I was saying, “I have to make that appointment for Elsa’s bloodwork!” In one of the pictures I’ve posted here, you can see my “to-do list” says, “Check CBC” Finally, on Wednesday, July 20th, I took Elsa to get her blood drawn – and she was a champ. Didn’t cry and happily chomped on a lollipop throughout the whole procedure.

From the lab, we went to meet a friend at the park. Elsa ran like a maniac all over the playground and splash pad. She probably fell 10 times and, each time, I resisted the overprotective mommy urge to sweep her into my arms. Each time, I looked, checked if she was OK from afar, watched her pick herself up and continue running with a smile on her face.

Her platelet count was 16,000 that day. A normal platelet count is 150,000 – 400,000. Platelets are the part of your blood that help you clot and prevent bleeding when you are injured. She definitely fell more than 10 times. Each time, I said, “She’s OK! She’s tough!” How she avoided internal bleeding that day is a total freaking miracle.

She was exhausted after the park, so I dried her off, put her in her car seat and went for a long drive. We drove to Collinsville and I bought a sun hat (another absurd item on my “to-do list”). I ran into the store, bought the hat while she slept in the car with the A/C running. I got back in the car and we set off for home. John called.

“George. Where are you?”
“I’m driving through Unionville. I just bought a great hat! It was a little expensive but . . . “
“George. You need to bring Elsa to Dr. Januzzi’s office. You need to bring her there right now. She’s really sick . . .”

That was it. That was the last thing I did. I bought a sun hat.

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Day 21

Posted on August 11, 2011 | 1 Comment

(Transferred from our Caring Bridge)

It’s easy to get caught up in your own head when your child has cancer. For me, at least, separating my own misery from Elsa’s is a challenge. I am often overwhelmed by my desire to take all of this suffering away from her. I envision my own shaved head and port implanted in my own chest. “I’ll take double chemo today with the extra long needles Docs – Bring it on!”

I imagine some sort of wiring system where they can give me all the chemo and steroids. Magically, the poisonous impulses will travel along our connecting wires, killing her leukemia, but only poisoning me. Nauseous, hairless, fat, I will stay home in bed. Lethargic and breathing heavily, I will comfort myself with thoughts of her out with her dad, enjoying herself. She can go out to Tots and Tunes at the library and return to her regular schedule of playdates, splashing in the lake and refusing to take naps.

It’s nauseatingly trite, but you find out that you would easily, in a moments notice, take 1,000 times the pain if they could take none. Not one seconds worth.

There are no connecting wires though. And she must take it all. Every poisoning seconds worth. All we can do for her is maintain our composure. Remain ready to laugh and play for the few seconds throughout the day that she can muster a smile or a few steps. Withstand her “Roid rage” with love and patience. Resist the urge to curl up in a ball, crawl into bed, and stay there indefinitely. Resist the urge to cry constantly. Put on a smile. Convince ourselves she will live. Really, she probably will. Convince ourselves that the poisoning is temporary and our little girl will return to us with slimmer cheeks, a softer belly, and laughter.

Gosh. Laughter. It will be so amazing when that returns.

More informative, less melancholy posts to follow! I promise! Sometimes, you just need to get the melancholy out though.

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Day 12: Keeping Track

Posted on August 3, 2011 | 1 Comment

(Transferred from our Caring Bridge)

One more thing. Just for the sake of keeping track:

Today is Day 12 of chemotherapy.

One week ago today, we were discharged from the hospital.

Two weeks ago today, her pediatrician called and told us Elsa is “very sick.”

We’re moving along.

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