Flashing Back for Awareness: 60 Day Mark (posted September 9, 2011)

3 Sep

First post in a week but I think that’s good – it must mean this is starting to seem like a new normal for us. In general our days, while varied, have been blurring together. With the exception of our appointments at the clinic, I rarely have an awareness of what day it is. This has also been surprisingly wonderful family time and Lenox’s spirits (and blood counts)  have been up. These weeks have been filled with juxtapositions – relaxing but stressful; lazy but full; rested but exhausting; full of fun and laughter while laced with sadness; happiness but some anger and frustration; etc.  Overall I feel so blessed to have these days with Lenox and Liz!

Because of the high temps here in Austin (every day since her diagnosis has been above 100 degrees – ugh!) and with her sun sensitivity from the medicines, we haven’t done much outside the house even with her great counts. The last few days have been our first glimpse of reduced temps, but as many of you know we are now having loads of haze and smoke from the wildfires burning all around Austin. It’s heartbreaking how many homes and families have been affected. The City has told residents we should stay inside today and avoid outdoor activities because of the particulates in the air. So one day soon, hopefully, we will get Lenox outdoors again.

As I may have mentioned previously Lenox has become quite nocturnal – who knows why – and so she stays up til about 11 or 12, and then sleeps til 10 or so; as we are constantly overseeing her, the whole family has become a nocturnal pack, much like the velocirators (Lenox) and owls (Liz and I – ever watchful, wise, protective, preening (Liz) … J)

This past weekend was the closest to normal we have had in awhile. Saturday we went to Gueros for tacos, drove around looking for Cows from the Cow Parade and played through the afternoon. Sunday we slept late, went to Central Market and the newly relocated Zingers (love that place!).

Lenox Slays the Leukemiasaurus: Clinic Visit was today and went smoothly. She wrapped up a week of steroids last night and today she got another dose of chemo (Vincristine); we go in for our second hospital visit on Tuesday. She talks more regularly and calmly about her doctors and procedures and will volunteer to you that “she takes Zofran in her  marshmallow cream.”  She still struggles with her medicines but recently a new phenomenon has occurred named “Lois the Super Slayer” who elicits in Lenox an urge to giggle, laugh, play, and take her medicine in the blink of an eye. We have always loved Lois so are not surprised that she has worked that same magic on Lenox.

Moms in the Margins:
Starting Monday I will get back into the work swing of things at least minimally – weekly executive team meetings, planning/retreat meetings, etc. Just a few hours a week but I feel like I need some presence back at the office and I very much want to support our ED and help however I can as we move into changes/a reorganization of the agency. Last Friday Liz had a “date” (pre-arranged by me, so no worries J) with some friends to get wings and play darts. Nice evening out!

Yesterday I tried my first support group for parents of kids with cancer – I left after just a few minutes but am not permanently turned off.  The flyer I had seen did not mention that there was a topic or speaker and when I got there they were talking about long term issues, legal rights, school processes when they aren’t working with your child, etc. Before she got started one of the families talked about how hard things were for their son (a 6 year ALL survivor) who has many  issues and they have really struggled with the schools. Hated to seem
like a wimp, but only 60 days into this I was just not up to hearing how hard or long lasting the fall out of all this will be. I can think about this Consolidation period through December and even through Maintenance for 2 ½ years and I can intellectually  grasp that there are long term effects, but hearing a family whose child had the same type of leukemia as Lenox talk about their son’s traumatic brain injury status from chemo was just more than I could swallow. Hope to try back again next month when I am more prepared for the topic they choose.

Shout Outs and Gratitude’s:

Thanks Soooo very much from Lenox to her cousins, CoCo and Shane, for the awesome care packages they have sent and especially the home made book! That was awesome and we can’t wait for your visit!

To Gigi for the great gifts from Scotland!

Thanks Christina for the wonderful date night for Liz – she had a blast with you and way to go on getting her back in darts!

Last but not least, to Lois our magic medicine woman thanks for all your visits!! Lenox loves you and will do anything for you!



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

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

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.





September is Blood Cancer Awareness Month

2 Sep

In honor of Blood Cancer Awareness Month, I thought I should do a post. Oh my hell, it has been almost two years – so what a great impetus to get current.

Cancer Awareness Month

Cancer Awareness Month

Support Lenox in the CureSearch Walk!

30 Sep

Once again our family is doing the CureSearch Walk, raising funds for children’s cancer  research, and celebrating the stoic impressive kids facing cancer. Lenox is still in treatment – 90% of the way done!  So celebrate her fight with us by walking with us or donating!


How Lenox is Beading Cancer…

13 Sep

There are these beads … Not the ones that Lenox stuck up her nose a year ago…
But beads for cancer kids where “every bead tells a story of strength, honor and hope.”

Logo for Beads of Courage, Inc.

Logo for Beads of Courage, Inc.

The beads are part of a program called Beads of Courage. The program is designed to support and strengthen children and families coping with serious illness by using colorful beads as meaningful symbols of courage and to commemorate milestones along their unique treatment path. The program helps cancer kids in coping with serious illness and provides something tangible the child can use to tell about their experience during treatment and after.

Lenox first began participating in the program at our first hospital visit when she was given a length of string and beads that spell out her name. We were also given a bead bag and a bead color guide letting us know which color or style of bead correlates with specific treatment milestones. Over time Liz and I log those milestones and then get the beads from our clinic Child Life Specialist and Social Worker. Lenox strings the beads – she has chosen to do several different strings of beads instead of one long strand.

Lenox's Bead Bag

Lenox’s Bead Bag

I want to share some of what these beads represent for Lenox, beginning on her very first day of diagnosis. Even Liz and I had not realized the number of times some of these things had occurred until tallied. So here are some stats on Lenox’s beads aka her treatment stats to date.

All of her strands of beads all together.

All of her strands of beads all together.

  • Lenox has earned just over 400 beads
  • You will note in the pictures lots of blue – Those represent 68 clinic visits
  • All those yellow beads – are 57 inpatient hospital admissions and/or nights spent at the hospital!
  • Total between yellow and blue this is 125 days of clinic or hospital time – approximately 4 months straight if taken all together!
  • The most prevalent color, black, represents 91 “pokes” (IV starts, blood draws, etc.)- OUCH! Liz and I are fairly sure this is actually too low of a number because in some cases it took them 2 or 3 tries to get a vein or access her port and occasionally her line would be compromised and have to be redone (those are not counted here)
  • Not including the daily dosages of chemo, or home administered chemo, Lenox has had 37 chemo treatments
  • Lenox has been to the ER 6 times
  • She has had 16 lumbar punctures (spinal taps)
  • she has had 21 surgeries / events under anesthesia in the OR
  • she has had 16 types of tests, scans, x-rays, etc
  • Lenox’s beads when laid out measure more than 14 feet!

Another neat thing thing about the beads, is that there are beads relating to special accomplishments or acts of Courage – what is so special about these is that they are self-identified challenges and Lenox was able to hand select the beads from a beautiful selection of glass beads. For Lenox some of the special challenges/accomplishments we identified were : learning to take pills; creating and using a routine strategy to get through each needle poke/access; making the transition from consolidation to maintenance; making her own tough decision on whether to get a port again or deal with the pain and issues of having a new arm IV at each visit; going through 3 horrific sinus washes; and last but not least, the thing that Lenox considers to be the one most scary thing is having to do the “white medicine” which is where we carry her into the OR and they give her an initial anesthesia (that is white) that has her cough/gag and then crash out.

There are also a few that are just generally about this road she is on – for instance, they gave her a beautiful glass fish that represents her having to struggle against the stream during treatment.  Also you will see in the picture a  bead that is a face with hair – that bead represents her hair loss.

You can see the glass fish bead (aqua) above her name. Also note the face of a girl to the right of her name. That represents her hair loss.

You can see the glass fish bead (aqua) above her name. Also note the face of a girl to the right of her name. That represents her hair loss.


The strand of mostly more special or challenging issues.

The strand of mostly more special or challenging issues.

The Record-Setting Shortest First Day of Kindergarten (2nd Post of the Day!)

6 Sep

Wednesday may have been the record-setting shortest first day of school ever! Lenox told us she didn’t feel good, but her energy was good and she seemed excited, so I chalked it up to jitters. But within a few minutes, she got a fever when we were out milling around with the other families before the very first bell had even rung. The fever was 100.8 – for you parents out there you know that this is not a temperature that is allowed in school – so the school thought she should go home and we agreed. So her first day was over before the first bell even rang!

Cutie in her school uniform on the way to her first day. Didn't look sick at all!

Cutie in her school uniform on the way to her first day. Didn’t look sick at all!

Posing on the "faux" first day of K.

Posing on the “faux” first day of K.

On a different facet of her new school, she is going to a great small private school that we are very excited about, The Girls School of Austin. We are so very lucky that her friend Delilah is also attending. Delilah’s parents, Homer and Trish, were friends of ours pre-kids, and we were pregnant at the same time, so Delilah truly is her very first friend. They had been attending St. George’s together and now are at GSA together. So happy they are together for this next school adventure. Love you guys!

Lenox and friend Delilah in front of school - right before she peaked a fever.

Lenox and friend Delilah in front of school – right before she peaked a fever.

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.


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.


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!

Having a Forest Day

8 Nov

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!






Hospital Update – yes, we Really are Still Here

4 Sep

Five days since last post…and still at the hospital. Lenox has had two CT scans, a bone marrow aspiration, and a myriad of blood tests and cultures. They ruled out a relapse of leukemia which was – IS – a HUGE sigh of relief. They have gradually been ruling out different possibilities, each time Liz and I researching that possibility, and then being grateful when that factor did not test positive. They also surgically removed Lenox’s port because of concern that it may be harboring the infection. She did fine through that surgery and is adjusting pretty well to having a arm IV while we are here.

Finally, on our 10th night here at the hospital, we have a diagnosis: Lenox has CMV (cytomegalovirus), a virus more commonly found in tumor-based cancer patients and other immune-suppressed populations; it’s not as common in leukemia patients. Some of Lenox’s symptoms that are attributed to the CMV are fever, tiredness and low blood counts. Luckily, this is one of the few viruses out there which can be medically treated so Lenox has already started on that medicine. It looks like it may be a pretty intensive round of daily IV treatment with additional treatment after that. We are still at the hospital for a few reasons. Lenox is still not fever free for a full 24 hours – we get close but then a fever pops up. Also, they need to see her counts improve. She has received blood, platelets and some other meds designed to get those systems back in order and with good counts.

While its hard to be here again, and disheartening at Lenox being away from her friends and school, we know she is where she needs to be, are glad to know finally what we are dealing with, and most importantly are glad it’s not a worse diagnosis.

Thanks too to all our friends helping us!

First Week of School… Not the Milestone we Expected

29 Aug

Like so many of you fellow parents out there, we were eagerly awaiting the day for Lenox to start SchooL. For Lenox, as an Explorer, her last year of pre-school at St. George’s. We had been hyping it up for weeks with her, and had gotten a new backpack, blanket, etc. She was soooo excited. This week would also be her first week of new soccer and gymnastics classes.

On Monday there were so many cute first day of school pics, or a new grade pics on FB. But, cruddy for Lenox, she had to miss the first day, and what looks like at least the first week week, of school. Starting on Wednesday of last week, Lenox started spiking fevers which required us to go into the clinic several times in just a few days for IV antibiotics And fluids. On Friday, we thought we had overcome it and she stayed fever free. Saturday morning Liz flew out for a week-long legislative institute in Sacramento, a wonderful opportunity. And we went to the pool. But by Saturday evening the fever was back and we were admitted to the hospital. While we have been here for day surgeries, and an ER visit, it has been about 7 months since we had been admitted up here in 4North, the Oncology wing. Aside from the pleasant reconnection with some of the amazing nurses and CA’s, it was a bummer to be back. We are now on night 4 and have confirmed we will be here Tonight again, a 5 night stay at a minimum. Upon admission, her counts were lower than our first admission at diagnosis last July. This apparently is not entirely unusual, but still jarring as you can imagine. Her body is fighting off something and we just can’t ascertain what. She has been on IV antibiotics since Saturday, fluids, and got a blood transfusion to try to help her counts. She is off of all chemo so her body can work on fighting the infection. Yesterday they added a second type of IV antibiotic. And unfortunately even with all the antibiotics, she still keeps spiking fevers periodically. At 1 am today, she spiked another high fever (high for ALL patient) of 103.2.

Our benchmarks for being released are fever free for 24 hours and better counts. They may be tweaked a bit – for instance if her counts would get better then they might let her go home with a mild low fever, or conversely if her fever stayed away entirely for 24 hours, then they might let us go home with less ideal counts. As it is, we aren’t hitting either. Its Not clear to me yet whether she gets to start back to school once discharged or if there is going to be a window of her being home but not back to daily activities. Guess it will just depend. So what in the world could be causing the infection?

While Liz and I almost always find Lenox brilliant, in true 4 year old form, she had recently stuck a bead up her nose at school! Really Lenox?! What in the world was going through that head? At the time, we laughed ( and of course got the bead out!) but while here at the hospital we started to wonder if there might be a correleation between said bead incident and the fevers? Could there be another bead up there? A raisin perhaps? (Lenox had revealed to us that she dreamed there was a raisin up there – hmmm, seemed suspicious to me, and may warrant some dream analysis)Or had that bead, pulled off a floor of a preschool, been possibly a little dirty? Or did that bead scratch the inside of her nose causing an infection? The permutations of how this bead might be the true culprit became farcical, but alas an ENT doc came and affirmed that there are no obstructions, etc (the raisin apparently really was a dream). It doesn’t appear that anything related to her nose is causing the fevers. Good to rule out but leaves us still unclear about the cause.

We are confined to our room, so Lenox doesn’t get any germs from anyone else, or give whatever she may have to other immune suppressed kids. So we have been hunkered down with books, movies, etc. Luckily she has been really tired too (possibly from the meds and low counts) so sleeping a lot. Otherwise being cooped up like this would drive her batty, a feeling I am totally relating to. With Liz out of town, our friends have been a godsend, keeping us fed, and allowing me some periodic breaks for showers. Thanks to you guys!

Will keep you posted further – but hopefully we will be discharged soon with a fever- free infection-free kiddo.

Brooke Boston