July 15 to July 28 (As Posted on Caring Bridge)

31 Jul

First – posts for the first 3 traumatic days of diagnosis are under Nov 16 so you may want to go their first.
Then, come back here and read from the bottom up.

Thursday, July 28, 2011 4:11 PM

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!

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.

Wednesday, July 27, 2011 4:25 PM, CD

They say after five or six of these clinic visits the kids become used to it all; today
was our second full outpatient clinic visit and Lenox is not “used to
it” but made some great baby steps toward acclimating herself to it
(though since they were baby steps they maybe were only visible to her moms).
Baby steps:

1. Last night when we discussed having an appointment today, she listened and did not
throw a total fit (as was the case last week)

2. This morning she put on a clean dress and combed her hair

3. She let us put the numbing cream and cover over her port (last week she wouldn’t
let us near it)

4. At the docs office, she walked over to get her ID bracelet on ( last week the
woman had to come out to her)

So this week her baby steps were those. We took her for her fave breakfast this morning
(shlotzskys at so lamar) to get her out (her first big outing this week) but
she was still a scowling testy little thing to the nurses, social worker and
doc. Her grunts and screeches seemed a little toned down to me :). They took
her blood counts, answered a litany of questions from my trusty notebook and
administered another round of chemo.

Lenox has gained 2 pounds this week – in perspective that is about 7 percent of her
weight – or the equivalent of me or Liz gaining about 10 pounds in a week! That
is expected from the steroids (pic attached of her riding her bike in the
garage with big chubby cheeks) and should come off again after Day 29. She just
packs food away at an amazing clip – for breakfast today in a 1 hour window she
had 2 cans of soup, 5 slices of bacon, a tortilla and a sausage/egg/ cheese
quesadilla and lemonade and potato chips.

Her white blood cell, red blood cell and hemoglobin counts weren’t much different
than last week but her platelets almost doubled – this is good because they are
what help with clotting if she were to get bruised or a cut and at the hospital
they had been so low she needed transfusions of platelets several times. The
big number we like to know about on a visit is her ANC (a neutrophil count)
which translates for the doc and us “how well she could fight an
infection” (I.e. Whether we can take her to Target – her dream
destination- or how much exposure she can have to friends). Her ANC last week
was 110 and this week was up to 200. The fact that it doubled is good but the
ANC for a healthy kid is about 1500 and the ANC they like to see in leukemia
patients is between 500 and 1000. Needless to say at only 200, our level of
vigilance won’t change this week. She would really struggle to fight something
off.

Over the last few days in addition to her spelling prowess she has become quite a puzzle
savant and is our teacher. She has deemed that Liz is “almost a
grownup” based on her puzzle completing abilities. She will have Liz put a
piece in place and say “good job LaLa, that’s how to do it” or say
“you need to push more gently on the pieces”.

Thanks everyone for your love!

Tuesday, July 26, 2011 10:45 PM, CD

Tomorrow is an outpatient chemo day. Hoping it Goes well for Lenox. Will post more
tomorrow with how it goes

Sunday, July 24, 2011 11:18 PM, CDT

Lenox’s day was a bit erratic. We hoped she would get to see her friend Ian (and his
mom Chris) and maybe one of her good friends Josie but she spent most of the
day veggin out and being quiet. She was fairly adamant about not wanting to see
anyone today even her kiddo friends. She had some moments where she looked
pretty tired and took several naps. But then later a super sappy whip-smart
puzzle-maniac came out to play and had a blast. She also came out to do some
“work” in the garage, hung a picture with Liz, climbed a ladder, and
did a small but fantastic sing and dance recital for us with all new moves and
lyrics! Other great news today – knock on wood – is that we may finally have
made progress on getting her to take her medicines. This has been a hard
emotional high-stress part of the day twice a day but we may finally have it
working out! Will see in a few more days if it’s a consistent new fix. Fave
foods for our omnivorous Dino-princess today were bacon (like7-8 slices!) and
again cans and cans of soup, and some pasta.

I have noticed more of her strands of hair around than usual and tonight after she
went to bed I was cleaning off the sofa and there were quite a few on the back
of the sofa where she was camped out for today. I have been trying to bring it
up to her a few times a day casually so we are sure she isn’t too scared or sad
when she realizes it’s happening. Night all – thanks for wonderful friends and
family and man Sara N. makes some AWESOME brisket!

Saturday, July 23, 2011 2:45 PM, CDT

Great visit last night and this morning from Rose, Carly and Grace. Rose made Lenox a
great Dino cake, Carly illicited one of the only Lenox-to-adult extended
conversations I have seen recently (so she REALLY liked her) and Grace is just
amazing. She is one of Lenox’s most favorite people in the world – they did
art, read stories, baked a cake and watched live octopus footage. Thanks so
much you guys for making the drive over from Houston! This morning Lenox is
eating like a T. Rex and had a busy morning excavating Dino eggs. She loses
energy quickly and crashes but has fun when she is up. I think her goal for the
week is to spell – she has been working on her vowels and how they work to make
words. Last night was a sad/sweet conversation paraphrased below.

Lenox: mom, I am not sick – I don’t have loo-kee-knee-a anymore.
Mom: sweetie, i am glad you feel better but you still have leukemia. You have
some parts of your blood that are sick and it will take awhile to get them
well.
Lenox: ok. I guess I have loo-kee-née-a because I have some boo-boos still and
Grace doesn’t because her blood is not sick.
Mom: thats right – some kids have sick blood for awhile and some don’t. Do you
know sometimes when kids get leukemia their hair falls out and they have a
smooth head just like when they were a baby.
Lenox: (giggling) mom that is crazy. Will I have a baby head?
Mom: yes. Some people lose their hair forever like old men but some just lose
their hair for a little while and then grow back cool mermaid hair and that
will be you.
Lenox: ok mom, but that is still crazy.
New pics today. Also super thanks to Nidia and Michele from TDHCA for their
gift bags, Tim for the ginger items, and the LBB Gen. Govt. Team for the biggest
coolest stegosaurus! She has been sitting on it! Love to all!

Friday, July 22, 2011 6:51 PM, CDT

Mellow day. She is pretty pale and lethargic today. But eating still like a champ.
Visits from Aunt Rose, and cousins Carly and Grace — yeah!

Thursday, July 21, 2011 5:55 PM, CDT

Got our news back early! Her blood test from Tuesday shows she is testing negative for
leukemia cells! This is fabulous news! It is based on blood, not bone marrow so
the Day 29 test from bone marrow will be a big benchmark still, but in many
cases kids don’t hit negative testing for leukemia cells as early as Day 8,
like Lenox just did. It doesn’t minimize our long road ahead of aggressive
chemo and maintenance therapy to fully eliminate it from her marrow and prevent
recurrence, but this news is very auspicious that we will be in a low or
average risk group through that process and not high risk. Cross your fingers
and keep the prayers and positive thoughts coming — the chemo and prayers and
positive energy are working already! Yeah Lenox!!!!

Thursday, July 21, 2011 4:21 PM, CDT

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.

Likely to post tomorrow – should hear some results from Tuesday’s procedure.

Tuesday, July 19, 2011 3:50 PM, CDT

Notes about pics are at the bottom of the journal entry. Hi everyone. Today was a
long day. Had to be to the clinic at 7:30. They do some touching base, take
vitals and then access her port. The port, for those not familiar with them, is
a small device under her skin in her chest. It is about the diameter of a
quarter , but the thickness of about 6 quarters (or a double stuff). It has a
direct line going into her superior vena cava so is a great conduit for drawing
blood and giving chemo or other meds. When not in the hospital or getting
treatment it is “unaccessed” and just is a bump under her skin. To
access it they have to numb the area and then insert a needle into it. Far less
painful than starting a new IV but still hard to adjust to and a bit jarring
the first few times. She was a trooper about it. After getting one type of
chemo and taking some blood, we transferred over to the hospital so she could
do a general anesthesia procedure for a lumbar puncture and spinal chemo. They
didn’t take her back til about 12:30 so she had to do no food or drink until
then (and was therefore a bit grumpy – wouldn’t you be too?). All went well. We
were all tired and drained from the day but I was pleasantly surprised at how
well she handled it. When we left the house this morning we had to force her
into the car so I was dreading her overall reaction to the day. Her blood
counts were still very low so we have to be very careful about taking her
places and being vigilant about guests but that was expected – her platelet
levels were good enough to not need a transfusion. Got some good news today too
– a blood test they drew last week takes about a week to get back. It evaluates
the DNA makeup of her leukemia. There are certain indicators they look for that
show her type of leukemia is either more, or less, receptive to chemo. Hers was
quite predominantly the receptive kind so that is great. Now we will have chemo
once a week for 3 weeks and shouldn’t have any more surgery procedures until
Day 29 (today was day 8 for reference purposes). Her weekly chemos will likely
sap her but in terms of the actual clinic visits shouldn’t take more than a few
hours per visit. Thanks all for your support and care!

Pics: Lenox’s medicine tray (ugh); Lenox doing art yesterday; Lenox and pal
Delilah on Saturday; Lenox and pal Cooper chilling out together on Sunday.

Monday, July 18, 2011 12:50 AM, CDT

Hi all. It is so good being home and Lenox is so much more herself. One of Lenox’s best
pals from school, Cooper, came over to see Lenox today. Yesterday another good
friend Delilah from her class visited too. She has also had quick “food
drop off visits” from two other friends – Patton and CeeCee. That
interaction with her playmates has been so absolutely the best medicine for
her. Those moments are when she is most happy, animated and relaxed! She also
talks a bit with some of them about being sick and they ask her questions –
those 3 year old conversations give us some great perspective about how Lenox
is perceiving what is happening. As to how she is feeling, Lenox is not eating
or drinking much and says her body and her tummy hurt. Her energy is pretty low
and the steroids she is on as part of the chemo keep her on an emotional roller
coaster. She is also very aware of her port and incisions that are healing and
is asking good questions about why they are there, etc. Big issue is getting
her to take her medicine. She hates it (understandably) but must take it so
it’s a twice a day battle. Huge thanks to those who have dropped off gifts,
sent video clips (we replay Grace and Josie’s over and over – she loves them!)
and posted to the Guestbook (we have been reading them to her and she likes
hearing from everyone). Also huge thanks to those who have brought meals
through the Care Calendar – it’s such a godsend to not be worrying about
cooking meals right now!

Friday, July 15, 2011 10:55 PM, CDT

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 aneshesia, 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 friends
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!

Advertisements

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: