The Long Lost Blog Post

6 Sep

I think I forgot I had a blog… not quite, but close. Sorry! Our last post was ten months ago. Then I had a few folks tell me they missed getting the updates, followed a few days later by Word Press sending me an email asking if I wanted to discontinue our blog site due to lack of activity and I thought “oh, hell, I can’t believe I haven’t posted!” I would love to say that those months were entirely uneventful, but quite a lot has happened, interspersed with the fun and challenges of regular old parenthood.

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All Things Lenox
After that long 2 week hospital visit in September, our October and November had Lenox still sick with a variety of pheumonia-like “stuff”, sinusitis, low-grade fevers, fatigue, etc. mixed in with a few day surgeries and heavy IV chemos. We were at the clinic so often it felt like we were BFFs with our oncology team. The silver lining of all these visits was that Lenox bonded more closely with her medical team, as did Liz who loves to tease and joke around with them.

The culmination of that ongoing unshakable crud was an ER visit Mid-December that resulted in an 8 day hospital stay. After sleuthing into the cause of her ongoing fever, they ultimately removed her adenoids, and did a lung and sinus wash. (I had no idea you could spray salt water into lungs and suck it out! Gross but cool!)  And it worked!  Luckily we got discharged just in time for Christmas. Like September, we went home with an IV line and home administered IV meds, which were now routine for us. One unexpected but very humbling experience of being in the hospital during the holidays was the generosity of others to kids on the cancer ward at Christmas. Every day different groups came bearing presents and treats. One group delivered individual trees with tiny ornaments to every kids room for them to decorate themselves, there was a clown show, a morning where a tree was overflowing with different sizes and fun designs of fuzzy Dearfoam slippers, and another day had several of the UT athletes giving the kids fuzzy blankets and stuffed animals. It was overwhelming and had the intended effect – Lenox was not as disappointed to be there.

Christmas gifts from UT athletes - this bag is nearly as big as she is!

Christmas gifts from UT athletes – this bag is nearly as big as she is!

Coloring Christmas trees in the hospital.

Coloring Christmas trees in the hospital.

"Rudolph" at a Christmas Clown Party.

“Rudolph” at a Christmas Clown Party.

After a few weeks of being back into the new year swing of things, in February on the day before her scheduled birthday party, Lenox broke her wrist (which is apparently common for kids on chemo b/c it tends to weaken their bones). She was a total trooper. We rescheduled her party for several months later post-cast removal, so when people asked Lenox how old she was, she would tell them she was supposed to turn five in February, but didn’t turn 5 because she had not had a party! I like that logic; I may take that tactic next year and skip the party so I wont turn 42!

Lenox in her pink and red cast - she picked this for Valentines Day.

Lenox in her pink and red cast – she picked this for Valentines Day.

Since February things have been “normal” for us – daily oral chemo, steroid induced corn cravings, the ever-present steak obsession (occasionally eating more than a pound in one sitting – eewww!), mixed with pre-school during the week, birthday parties, Easter egg hunts, rodeos, and playdates on the weekends. We had a wonderful trip from the Carson’s in January – thanks so much CoCo and Shane for being such fab cousins! Lenox got to see her Gigi several times and got to spend some super-fun time with her Prado/Drake cousins, challenging them to swimming races, dancing and playing. She had her first real mani/pedi and also graduated from Pre-K with family to watch. We are sad to leave our St. George’s family.

Lenox with CoCo and Shane.

Lenox with CoCo and Shane.

Racing toward the Easter Egg Hunt.

Racing toward the Easter Egg Hunt.

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First "real" mani/pedi.

First “real” mani/pedi.

The Pre-K graduate!

The Pre-K graduate!

All smiles.

All smiles.

Lenox with both grandmas for her graduation weekend. Love you Nana and Gigi!

Lenox with both grandmas for her graduation weekend. Love you Nana and Gigi!

So how Has Lenox been growing up? She is a total ham, loves to play pranks, is totally inquisitive, loves her friends, loves us, and is a kick-butt little swimmer. She lost her first tooth (but thought her tooth fairy box might not be big enough for what she wanted the fairy to bring), took off her training wheels (but then has avoided riding her bike like the plague, go figure :), and takes showers on her own (but ironically still grumbles to have to wash her hands). Her maturity in handling the medical facet is inspiring. When I go back and read how truly appalling her first few months of treatment in July 2011 were for her emotionally, she is like a different kid. During these last 10 months, we had to decide whether Lenox would replace her port versus a PICC line versus neither port or PICC but having to get an arm IV each visit. We let Lenox make this decision and she really thought it through, making an educated choice including weighing the pros and cons – including the degree of expected pain under each choice. Man – even at 41 I would have trouble picking between several pain-inducing choices! She also has created a strategy for handling appointments and having the IV put in, she discusses that strategy each time with the nurse. She has learned to swallow pills like a pro, taking as many as 10 at a time!  As I mentioned above she really loves her medical team and her oncologist is WONDERFUL with her.

Lenox and her oncologist dancing to Katy Perry's Firework.

Lenox and her oncologist dancing to Katy Perry’s Firework.

Lenox getting a piggy back ride from her oncologist as they head into OR for spinal chemo. You can see how much they enjoy each other and how much Lenox trusts her.

Lenox getting a piggy back ride from her oncologist as they head into OR for spinal chemo. You can see how much they enjoy each other and how much Lenox trusts her.

Moms in the Margins

As we mentioned previously, Liz got promoted about a year ago, so from January to June had her first legislative session as a legislative budget manager. She kicked butt and did a great job – and I got to experience (pretty closely) single parenthood. Tough, but empowering for each of us in different ways. That wrapped up in June and Liz and Lenox have had a great summer reconnecting and making up for missed time. Liz has continued to stay fit, running and biking.

Lala and Lenox goofing off.

Lala and Lenox goofing off.

The Three of us at the duck pond.

The Three of us at the duck pond.

I often give you guys little excerpts or incidents – as all you parents out there know, occasionally your kid says something that really jars you. The other day Lenox unwittingly asked a series of questions in line with her typically inquisitive self:

Lenox: (as driving by a cemetery) Mom, what is that place?
Mom: its a place where people who have died, get buried and their families can visit them
Lenox: So how do they get underground?
Mom: there is a special time called a funeral where the family and friends all say goodbye and the person is in a box called a coffin which is then put into a hole in the ground at the cemetary
Lenox: But not all people are the same size – so do the boxes come in different sizes for different people?
Mom: yes
Lenox: what about kids? Are they in cemeteries?
Mom: yes, sometimes
Lenox: so if I died I would be in a little box just my size and you and LaLa and my friends (she named a list of specific buddies) would come say goodbye?

Oh My God! really?! She is just asking what is a seemingly logical line of questions… normal. But fuck! Did my 5 year old fighting cancer really just discuss her coffin and funeral with me?!

And so it goes! Lots of fun and giggles and busy life interspersed with bits of medical moments and disarming discussions. Our end of treatment is in sight – January! And while we don’t have a date set you can count on a big bash to celebrate her finishing treatment! Whoop!

Hope you all are well – we miss and love you all!

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