Archive for March, 2013

Signing "cracker"

Jenna signing “cracker”

We threw caution to the wind after Jenna’s liver biopsy last week. We figured whatever the results of her biopsy, things would be changing again and it may be our last chance for a while to not worry incessantly about Jenna being exposed to illness and for our family to get out together. As a result, not only have I not wiped the house down with disinfectant in over a week, Jenna also got to play with a neighbor’s grandbaby and give their kitty cat kisses. She played with her cousins, at a fairly large family gathering, instead of being admired from afar. And this week we all went to the Living Planet Aquarium and then out to dinner at Bambara where Uncle Lou is manager. It’s been a big week for our Jenna. And for us. We’ve led a pretty sheltered, often solitary, life for the past 6 months and this past week has been really refreshing and felt almost “normal”.

photo

Round 3 of Jenna’s chemo last month went relatively well. They reduced the amount of chemo by about 30% so by Thursday night she was finished and we went home. And we stayed home! No fevers, no rash, no ER visits for over a month! Woohoo! She was quite jaundiced though and it did take longer after round 3 for Jenna to bounce back and act like her normal self. Obviously the chemo is taking a toll on her little system.  She was scheduled for another round of Clofarabine this month, but as it turns out, her biopsy results were very good… and different.

The good news, the great news, is there’s no LCH in her liver. Yea!!!!!! The different news is, because of the LCH and the chemo, she has Stage 3 Fibrosis of the liver which is one step down from liver failure. This is scary. I really have to banish the scary thoughts from my mind or I freak out. But the great thing about the liver is its ability to regenerate so they are hoping her liver will heal now that the LCH is gone. As her liver doctor says, “The liver is cool!”

To keep the LCH from coming back, Jenna’s chemotherapy will now go into a “maintenance” level for the rest of the year. Beginning this week she will receive small doses of an even stronger chemo drug, called Cladribine (or 2CDA) , over 5 days in the hospital every 8 weeks. In between she’ll have steroids and the chemo drug she had back in September, called Vinblastine, in the outpatient clinic. And so our journey continues.

Our little sweetie pie!

Our little sweetie pie!

Jenna’s overcome a big hurdle in her healing journey and now we are gearing up for the next leg. Our Jenna is a joy and a marvel…

(If you want to read about Jenna’s healing journey, this link will take you to the beginning blog entry)

Read Full Post »

%d bloggers like this: