Lenox Slays the Leukemiasaurus

In recognition of September being Blood Cancer Awareness Month and Childhood Cancer Awareness Month, I am going to be posting some excerpts from blog entries throughout Lenox’s treatment. For context, Lenox was diagnosed with Acute Lymphoblastic Leukemia (ALL) on July 9, 2011. Two and a half years later, in January 2014, Lenox completed treatment. Below, are three excerpts from those first few weeks.

Friday, July 15, 2011 (6th Day)

Tonight we came home from the hospital! After 6 nights we are back in our own beds and our baby is HOME! It was tough – the first 3-4 days for Liz and I were strength, calm, and upbeat smiles when with Lenox and breaking down in tears when turned away. Our baby really just can’t have cancer – someone is going to come in and say her blood is really fine, right? Just a wretched mixup. But no one came and we have accepted that its true no matter how much we don’t like it.

We had some rocky bits that first week – allergies to platelet transfusions, no accessible veins so lots of trying to get those veins before they just collapsed (I.e. Lots of sticks and pricks and tears), two surgery procedures requiring general anesthesia, several high leukemic fevers that postponed needed procedures, etc. But as we left today she has now had chemo three times and has had a portacath implanted in her chest for good IV access over the coming treatment. She is bruised and weak, but still has a Lenox smile and her first requested stop before even going home was Taco Bell.

Many of you have asked what the future of her treatment looks like. We go back on
Tuesday for more chemo and bone marrow testing (a day surgery that requires general anesthesia again). Ideally, for her type of leukemia, those test results (which take about another week to get back) will show a specific proportion of reduction in leukemia cells being created in her bone marrow. Then for the following 21 days she will have chemo once a week. One of the big benchmarks is the bone marrow test at day 28 (another day surgery) – there are specific levels that most kids have at that point. After that the
“typical” regimen, assuming those results look as hoped, is a 6 month very active treatment period of chemotherapy followed by a 2 year plus maintenance period. In total, in an ideal case, it is a 2.5 year regimen. These first six months will be the period of a compromised immune system — no school, more limited activities, small play dates are ok, but just total vigilance in watching out for her blood counts before doing things so we can protect her. They expect she will start having the more apparent side effects of chemo around 4 to 6 weeks – naseau, fatigue, weiht gain/loss, hair loss, etc. That
first 6 months will be when we need the most support. As we get results and hit the varying benchmarks we will keep everyone posted.

Lenox knows her “blood is sick” and that she has been feeling lousy, but understandably does not grasp the long term implications.she misses her friend and school. Some of her more heartbreaking questions have been “Why does my body keep hurting?”, “Cant you please take me home?” “Can i go to school tomorrow?” “why do i have ouchies?” and”will i have throw ups every day?”

The massive outpouring of support has been so amazing for us and I must say that in
spite of how truly difficult this is going to be we feel it is less daunting
with you all by our side. thank you all for loving us!

Thursday, July 21, 2011 (12 days since diagnosis)

Hi all! Sometimes you have to experience something to believe it and sometimes
you can’t help but see the humor in a situation even when it’s terrible. Case
in point – Lenox on steroids. We were told she would eat like a linebacker and
become very volatile and angry (‘roid rage) but I guess because we didn’t see
it the first few days we were skeptical. She was her normal moody self and the
same finicky eater. But now like Jekyll and Hyde it is upon us. Today for breakfast
she wanted cheetohs, pirates booty (for you non-parents booty is toddler
manna), cheese and crackers and juice and ate it all! For lunch she ate two
cans of soup (not bowls, but CANS!) and since lunch she has eaten booty
nonstop. Am pleased b/c she seems so thin right now but wow! And she definitely
has the moody anger thing in spades now! If you are an adult entering our house
and make the grave mistake of saying hello to Lenox, you are rewarded with a
part-dinosaur / part-banshee shriek of “eeennnnaaaaa!!!!” (translated
as leave me the hell alone). If you are one of her moms and ask her if she
wants a drink or to do legos you get the same “eeeennnnaaaa!!!!” but
with a cry at the end and a condescending look like we are idiots (I didn’t
expect that look from her til about age 13 – not 3). This is also translated as
leave me the hell alone. If you are crazy enough to actually go get her
something she wants – like water, simple right?- you get a sobbing mess for the
wrong amount of ice cubes or the wrong color cup. When you ask what color she
wants and she wants blue, how dare you come back with blue b/c by then blue is
so not the right color! It’s impossible not to just step back and laugh at the
situation and be impressed with her feistiness. It’s good to know at least that
the meds are working and she is doing the same things as so many of the kids
who have dealt with this. This morning Liz and I were both comforted by the
fact that we both think she is a great old brat, but both realize it’s entirely
the steroids and not to take it personally. We warn all who enter that she is
not going to be glad to see them, or even mildly polite, unless they are under
the age of 5, in which case she is happy as a clam and eager to chat and
share.

On a less humorous note, I am starting to do more reading about leukemia and
keep getting shell shocked. Those first shell shocks were of course the
Saturday mid-day phone call saying “she has leukemia, get over to the
oncology Dept right away”, then we start to cope with that and a few days
later the “no school for six months” and” two and a half years
of treatment if all goes well” knock me over. Today I am reading about the
“late effects” of surviving leukemia – isn’t it enough to have had it
and survive it? Apparently not. There are a myriad of residual affects
including learning disabilities, heart and lung problems, infertility, etc. I
get I that these are relatively obvious when you think of the aggressive nature
of chemo, but somehow realizing those effects in concept is vastly different
than when this is LENOX that those things may happen to. As I have said to some
of you before, excuse the potty mouth, but this fucking sucks! I really don’t
want to be a member of this club!

Last thing is we are really hoping to get a great group out for the Austin cure
search walk on September 24. Please join our team or register to walk with us.
We will be designing a shirt for all of us to wear too. So mark the date, walk
or donate.

Thursday, July 28, 2011 (19 days since diagnosis)

So there is a new lexicon for us and one of the first terms is “Cancer Kids”.
This is the term commonly used for this new club Lenox is in. It’s used in
books, blogs, websites, etc. There is even a “Jeff Foxworthy”-like
list of top “you know your a parent of a Cancer Kid if…” Even after
only 3 weeks as novice club members I found the list funny and not offensive! (http://www.darrelsplayground.com/blogs/writing-you-know-youre-the-parent-of-a-child-with-cancer-when)

Yesterday Lenox told us that “her bandaid came off (from them accessing her port on
Wednesday) and it didn’t hurt anymore so the leukemia must be gone” — oh
I wish it were that simple my sweet girl!

I recently had shown her a page in our “leukemia bible” (a wonderful
guide for families of kids with leukemia) that shows a portacath being held in
a hand and a drawing of what it looks like implanted in someone and how it goes
to their heart. She has asked to see the picture several times since and talked
about it with Liz (that mommy showed her pictures of her port). Clearly she is
processing this in some way – more than ever before I wish I could get into her
head and really know what thoughts and feelings are channeling through her. We
read that it is important to make sure we explain as much as we can to Lenox,
because at this age they fill in the blanks and parts they are not told with
their imagination. As Lenox’s imagination is quite robust we really have tried
to tell her as much as we think will make sense to her. But I can just imagine
Lenox’s vivid version of what is happening in her stream of conscious way of
chattering and telling us things:

— Lala, hey Lala, A really big T Rex was fighting with a dragonsaurus and they made a
mess in the classroom at school so I can’t go to school right now – right Lala
– and then because one of the dinos caught a cold and sneezed the cheese on me
(eeewwww Lala) I got loo-kee-nee-a and we had to visit the hospital and the
loo-kee-nee-a was in my arm – ok Lala – but the dino didn’t mean it and I said
bless you so now the dinosaurs are friends and I am better and since I am home
I’m not sick anymore but we should all eat lots of cheese and crackers and soup
and wear masks so we stay well but I have a port, see LaLa, and it is a bump in
my skin but it doesn’t hurt and it’s if the doctor needs it. Now let’s talk
about octopus tentacles, ok LaLa?

I could come up with tons of other Lenox versions but hopefully she is getting enough
truthnto not be too scared and enough of her own make-believe to make it
interesting and bearable. Interestingly, though she is a very verbal and
articulate little thing, she has gotten pretty turned off to talking about how
she feels physically and just gets more quiet and withdrawn as she feels bad.
Or if I ask her if her body hurts she yells “don’t say that to me”!
She also has gotten so used to me asking if she is ok after she sighs, gags or
squirms that before I can ask she says “I’m ok mom”. But emotionally
she is a bit more chatty and when I asked her if she was sad missing her
friends from school or was ok at home with the moms, she said the moms are good
and “I am happy, mom” with a giggle.

In talking about “our” hair as a family we all agreed, much to my
chagrin, that while Liz and Lenox would look great with beautiful bald heads
atop their nicely shaped faces and necks, I on the other hand would look much
like a pasty bowling ball atop a pudgy short neck. Thankfully even Lenox
realized that wouldn’t be so pretty to look at so instead Lenox’s choice for
mom is that I do all my hair really blue (or blue and green like a mermaid) to
go with the new hair dos in the family. So when most of you see us next Liz
will likely be dashingly shorn, Lenox will be thinning and tuftilly looking
brazen and courageous and I will likely have very colorful mermaid ocean-ish
hair!

Lenox’s Grandma Sue sent a wonderful perfect gift for our house-bound scamp – an indoor
kids roller coaster! Wahoo! It came today and we put it together right away.
See picture (I had to zoom out pretty far as it’s 10 feet long)! I know her
Grandpa Jerry (my dad) will be watching over her through her rambunctious use
of this new mega-toy and while she fights her leukemia. For those who do not
know me that well – my dad died in August of 2000 of brain cancer and put up
quite a fight. He was a brilliant attorney and professor but also a big hiker,
cyclist and dog lover who had a big goofy laugh that I sometimes hear coming
from my lips or Lenox’s. He so would have appreciated her zest for life.

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.

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!

Coloring Christmas trees in the hospital.

“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.

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.

Racing toward the Easter Egg Hunt.

First “real” mani/pedi.

The Pre-K graduate!

All smiles.

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 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.

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!

So clearly I had another hiatus in posting. I just asked Liz tonight if I had posted since our discharge – neither of us could even remember. That seems to be happening to us now that we are both in our forties :). But clearly I hadn’t posted so Oops. Ends up we were at the hospital 14 nights before we got discharged! As I mentioned in the last post she had her port removed and was diagnosed with CMV. That visit was longer by almost a week than any prior visit – and felt like it too. We were all so ready to get out of there!

When we got discharged, instead of her port she had a PICC line, which is a central line that has external access (see pic). So its like a port, but remains “hooked up” outside her arm to a short IV line externally for easy non-needle access. And we needed that b/c we were being sent home with a new treatment for the CMV – twice a day home IV meds. At first we were pretty spooked at the regimen which required uber-vigilance for sterility and took about 1 1/2 hours each time (as though we had a spare 3 hours in our day) but it became fairly routine pretty quickly. If doing home IV meds meant going home, we were all for it. There were a few drawbacks to the new line, like weekly dressing changes (imagine ripping off super sticky band aids off the tender part of your upper inner arm), but Lenox was able to get back to school (albeit a little “riper”than usual, since we couldn’t give her a real bath with the PICC line). We also had to put her swim lessons on hold since the line couldn’t be submerged.

Without getting into too much minutia, after about a month, we scaled back to IV antiviral meds once a day, and then a few weeks ago down to just oral meds. She will need to be on that particular antiviral until the full leukemia treatment ends, as they don’t think her system can keep the CMV suppressed while on chemo. The nice thing about the oral meds is we were able to remove the PICC line, which Lenox was thrilled about. The only damper to the excitement of real baths and starting swim lessons back up (wahoo!) was knowing that without a port or a PICC line, her next visit to the clinic would require an arm IV. Lenox was aware of this as the PICC line came out but as some of you may recall, she was pretty traumatized by the arm IV last July and has not required one since so I was wary.

In the midst of all this, life has been pretty “normal” – Lenox is in her pre-K class and her great school also does music, Spanish and dance during the day. She also does some fun extras of art and soccer a few afternoons a week and gymnastics with her close pal Josie on Saturdays. And of course now she can gt back to swim lessons with Mr. Billy, her swim teacher that she is a little boy crazy over. Her Gigi came and visited which was a nice treat. Lenox had a Great Halloween, having over two pals and their families. We dressed as the family from Brave – Lenox was Merida, Liz was King Fergus and I was the mother/bear.

Then today was our first arm IV clinic day and… I would love to say that it went smoothly, but… it totally sucked. Lenox, understandably kept squirming and saying she was nervous and “terrified” so we couldn’t get the IV into her arm. We finally had to hold her down (5 of us) and she was hysterical. After which she ranted, hit, bit and then screamed at us about what horrible mean parents we were.(who an blame her though?! What other outlet does she have to rage against what is being done to her?) She said she didn’t want any PICC, port OR needles and hated coming to clinic and didn’t ever want to come back ( and never wanted to see us again – she was going to go live in our house and we should go live somewhere else)! So then I lost it, crying but trying stoically in front of Lenox not to look like I was crying. (i know of no women who an successfully hide crying). But I didn’t lose it because Liz and I had just been evicted but b/c it was one of those moments for me where the horribleness of the whole fucking cancer and treatment just overwhelmed me – I don’t want her to EVER have to come back to the clinic either. I HATE that she feels we “betray” her by assisting in this. About 95 percent of the time I focus on the trees which lets me just deal with each day or challenge bit by bit; this seems to keep a good sense of normality for the three of us. But at that moment I emotionally zoomed out to the whole forest view of her leukemia and HATING that our 4 year old has to make a decision between 3 equally lousy, painful scary choices. How is that tolerable for a child or her parents!?

At today’s visit her white blood cells and ANC counts were sky-high meaning her body is fighting an infection, but her lungs sounded clear ( thankfully, because did I mention that a few weeks ago she also had pneumonia? Yes, I shit you not!). Somehow, as we chicks do at time, I had opened the dam and the rest of the time we were in the clinic I was like a faulty faucet and couldn’t stop my eyes from leaking out tears. Way for me to be strong for Lenox (not!)

Oh and moms on the side? Not to continue on with whining (but, its just been that kind of month), but Liz and I have both had bronchitis recently and I also had the flu. Liz is working lots, and loving her job. And I have finally been wrapping up oversight of several Recovery Act programs that I have worked on for the last few years, bringing some great successes and closure with it.

Thanks to everyone for loving us — and reading through a more morose post than usual for me ;). As we begin this month of giving thanks I am indeed grateful for all of you and most importantly for having Lenox snuggled next to me in bed giggling, kissing my eyelids, and clearly having the resilience to have put her clinic visit behind her Man, she rocks!