More Learning to Live Again

In February, as we drew closer to the end of Jenna’s chemotherapy, we realized we had been so wrapped up in “the cancer world”, afraid of exposing Jenna to any kind of infection, trying so hard to protect her, to keep her safe and healthy, that we’d kind of forgotten how to live life. So we created a family project, “Learning to Live Again” and began right away. At first, it took a lot of effort, planning what we’d do each week, but now that we’ve gained some momentum it’s become easier and easier!…

• For the first time in over a year and a half, we spent time with friends, celebrating a friend’s birthday. Good times!

• We’ve been cooking more… and eating... Especially cookies.

• We harvested radishes from our garden boxes and planted flowers. We even made a little progress on our yard cleanup.

• We took our son to Boondocks for his birthday, played mini-golf, drove go-karts, played laser tag, ate pizza, played video games and had a ton of fun. (This would have been way too risky before, with all the kids/people who play here)

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• After waiting patiently to get a Bearded Dragon the entirety of Jenna’s treatment, our son was able to get his first pet ever. Unfortunately Jenna’s doctors discouraged us from getting a reptile (or even a cat!) because of the bacteria they carry. But our son took the news well and decided instead on a pet rat he has lovingly named Remay. Isn’t she cute?

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• We met the Power Rangers Samurai actors and some of the dancers from So You Think You Can Dance at a HopeKids event. What an awesome time!

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• We went to a LEGO Fan Event in our area… I’ll admit that while both kids had a great time here, I was a little psycho. Jenna kept putting LEGOs in her mouth and the thought of all of those pieces being handled by who-knows-how-many kids, well, we spent a lot of time hovering and used a lot of anti-bacteria hand wipes. And I tried not to freak out.

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• We went to the new Living Planet Aquarium with HopeKids. I didn’t get very good pictures, but we all had a fun time, especially Jenna who pointed with delight everywhere we went, squealing, “Daddy! Daddy! Daddy!” Wonderful to see her so alive and happy!!

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• Gina from Little Lubby Dubby Photography took pictures of Jenna and our family at Red Butte Gardens, made possible by Tiny Sparrow Foundation. A wonderful experience and absolutely gorgeous pictures.

Jenna, May 2014

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• We went to a Renaissance Faire, also with HopeKids… My husband tried on leather armor they claimed would last 100 years and he said it was so comfortable he wished he had reason to buy/wear it other than looking buff…

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I especially love this selfie, the only picture I have of myself at the Faire, with the lovely port-a-potties in the background.  = )

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• We went swimming and Jenna squealed with delight the entire time.

• We had a picnic at the park.

But no matter how committed you are to having fun, as the saying goes, life happens. In early May Jenna was formally evaluated for her liver transplant. This entailed several days at the hospital, many tests and labs for Jenna, hours of information for my husband and I, meeting one of the surgeons, the transplant dietitian, the pharmacist, the coordinator, learning about the process of being listed, what happens before, during and after surgery, etc., etc., etc. The transplant unit social worker also spent hours interviewing us about our family history, health history, work history, how we met, Jenna’s health history (in our words), how we handle stress, how we expect to handle her transplant, and basically ensuring we are stable folks who will “take care of the organ” after transplant. (They actually said “take care of the organ”, heehee.)

As of May 9th, Jenna is now on the liver transplant waiting list. As long as she remains stable, they expect it will be a year or more before she has her transplant. The year wait will also give her a chance to grow which makes it easier to find a liver. Our job now is to keep her healthy, work on her eating and continuing working with Early Intervention to get her up to speed. And have fun!

So that’s what we’ve “accomplished” in our Project. We look forward to a fun-filled Summer and wish you the same!

Posted in Blog Posts, Fabric of Life, LCH and Chemo Tagged with: , , ,

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