Awareness: Looking Back on the First Month

2 Sep

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.

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One Response to “Awareness: Looking Back on the First Month”

  1. Jen Lotti September 2, 2015 at 6:24 PM #

    I am so glad that you are writing again! Was thinking of you today…miss you! Xoxo Jempy

    Sent from my iPad

    >

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