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!

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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

Happy Anniversary…Really?

10 Jul

Today marks one year from the day we learned Lenox had leukemia. One year since we had a blast that morning at the pool and were standing on the porch when my phone rang. One year since we raced over to Dell Children’s to meet with the waiting oncologist. One year since….  

In spite of the actual day being permanently tattooed in our minds, I can’t help but see today as a Happy Anniversary because I am happy Lenox is alive, thriving and vibrant!

The last year was filled with so many transitions:

  • As parents, we moved from being overwhelmed at the intensity of watching our child in pain to accepting it (still hating it, definitely not inured to it) – we now know how to support her through those times so much better
  • From many, many, MANY tears to many fewer tear
  • From the initial intimidating clinic and hospital environment and all its unknown people to the welcoming, familiar places they have become. Lenox chats with the intake staff, races down the hall to pick her room and giggles with (and even hugs!)  her nurses and doctor.
  • From many, many ewey, yucky medicines to take lasting several hours – and extensive bribing – to get down her throat, to many, many ewey yucky medicines that she is resigned to needing and lasts only about 10 minutes – and less expensive bribes – to get down her throat (still vehemently hated by Lenox).
  • From a sick, tired, bald-ish home-bound 3 year old to an ebullient, prank-pulling, swimming, biking, rhyming, pixie-haired pre-K love bug.

I know I have gone on and on before about how blessed we feel because of how great folks have been, so I won’t belabor that again, but we still feel that way! So in honor of today’s anniversary, I asked Lenox a few questions so you can hear from her about this anniversary.

Q:  Lenox, what has been the hardest part of the last year since you had to start slaying the leukemiasaurus?

A: “The  butterfly, it hurts so badly and it is hard to do the numbing cream too. And the clinic and the hospital.” (Note, the butterfly is the needle and line used to access her port; they do the butterfly at every appointment to take blood and give meds if scheduled/needed.)

Q: What has been a good part?

A: “Helping take out the butterfly.”

Q: Favorite food during this time?

A:“Double noodle soup.”

Q: What was your favorite part of being home all together?

A: “All the hugs and kisses.”  (I was pleasantly surprised to hear this – I thought she would say Legos or Harry Potter).

Q: Do you like being back at school?

A: “I am not happy to be back at school because I don’t get your hugs and kisses at all.”

Q: What do you think about having leukemia?

A: “I am frustrated with you asking me questions! Ugh!” (speaker stomps away)  

And there you have it. Is Lenox doing very well these days? Yes! Does she still dislike almost every aspect of having leukemia? Yes! Do we still have a lot more treatment to go? Yes, but we are much further down the path; of a 2 ½ year process, we already have a year down. Is Lenox the most awesome fighter? Yes! 

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Woo hoo and Happy Anniversary!

P.S. Feel free to pose more questions to Lenox (you can add as a comment to the blog) and we will post back a reply to you in the diva’s own words.

The Lesbians, Lenox and the Leukemiasaurus: A Lesbian Family’s Experience with Childhood Cancer

1 Jun

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This post is in honor of Blogging for LGBT Families Day.  To date, none of our “Lenox Slays…” posts have focused on this facet of our family. For you regulars, in case it’s needed, LGBT is an acronym for Lesbian, Gay, Bisexual, Transgender.  For those reading this post as their first exposure to our blog, here is a wee bit of background. On St. Patrick’s Day 2005, Liz and Brooke (aka the moms) met, fell in love, moved in, you know the bit… In February 2008, Lenox, our sassy daughter was born…the bliss of parenthood ensued. Liz and I fell more in love than ever we thought possible with our little girl; Lenox is a strong, smart, dinosaur-loving, bike-riding dynamo. As though any other option were possible, she is a total mama’s girl!  🙂 On July 9, 2011, when Lenox was 3 1/2 years old, we were felled, literally, as we learned that Lenox has leukemia. In true Lenox form, this battle is equated to a dinosaur slaying, and the blog Lenox Slays the Leukemiasaurus was born to share her struggles, wins and little girl-hood with our friends, loved ones and supporters.

Ever since Lenox’s leukemia diagnosis, I have thought about the two-mommy facet of our family – are there many other families with cancer kids who are gay-parented families? (And, no, for the pediatric cancer neophytes, “cancer kid” is not glib or insensitive; it is common vernacular in the pediatric cancer scene.) Is this trauma/drama of our kiddo’s devastating diagnosis any different for us than straight parents? How many of us are there?

Well, nationally, it is estimated that there are 2 million children in the US being raised by gay parents.  The incidence rate of all kids’ cancers is 14.8 cases per 100,000 kids in the US.  If you apply that incident rate to those 2 million kids with gay parents (I know, I am sure some glaring assumptions are being made in doing so) I would guess there are just fewer than 300 kids in the US with cancer and gay parents. That seems small, thankfully, but at the same time high – really? 300 other families like us? Where? Who?

I searched for online support groups for gay parents whose kids have cancer; after all there are several pregnancy sites with subgroups for gay mamas, there must also be some for this. The variety of sub-groups among cancer support sites is pretty vast – subgroups exist for all manners of dichotomies and less common cancer types. But in all my searching, the only group I could find was for a Rainbow Childhood Cancer Connection. Sadly, their most recent posts were from 2008.  I felt impelled to post on gay parenting web sites or on sites for parents of kids with cancer, to send out feelers.  Hello? Any other lesbian moms going through this now? What is your experience like?

But I have hesitated in tossing out the feelers. Does the fact that we are gay families going through this really give us anything more to bond over or share? Self-stratification among parents of cancer kids seems to trend understandably by locale, or often more specifically by type of cancer, primary oncologist or clinic, age of the child during treatment, phase of treatment, etc.  So does the LGBT status of the parents even matter? Of course, ideally it shouldn’t be different, but the fears we face, and how we may choose to approach situations, is different, at least subtly. So I decided to do this blog post about the “gay” aspect of our family’s leukemia experience. Which experiences along the way for us, in our great gay-friendly city (Austin), were different?

As you can imagine, in the beginning we were aware that the possibility existed that we might be treated differently – from the horrifying initial possibility that they may try to prevent both of us moms from fully engaging in medical care and decisions (every gay parent’s worst nightmare) to the more subtle interpersonal engagements we might face. One of the first things I thought of as we prepared ourselves to go over to the cancer ward of our local Children’s hospital that very first day – besides sobbing and trying to alternately not show Lenox that anything was wrong – was whether we should bring the adoption papers establishing Liz as the other legal parent. Later that day, after we had been admitted to the Oncology ward, we sat in Lenox’s hospital room with Lenox’s oncologist. After hearing all the medical next steps and absorbing all the things a parent never wants to have to digest, she asked if we had questions.  In spite of all the turmoil of the moment, I told our doctor nicely but firmly (maybe I just imagined it was firm, I might have been a quivering mess :)) that Liz is the other legal parent and everything was to be handled that way. Our awesome doc just said um, yeah, this is Austin, not an issue. That definitely took a weight off our shoulders, but at that moment the cancer diagnosis for our daughter had placed the weight of the world there. I can definitely say that had her answer been any less affirmative, a shocking devastating day, and many days to follow, would have been made infinitely worse.

I am pleased to say, now, that our oncologist seemed to speak not only for herself in her answer, but her peers and the other caretakers we encountered.  But initially, we did not know, nor were we comfortable assuming, how far-reaching her open-mindedness would extend. We have worked with the same cancer clinic, same nurses, same hospital ward and same OR team through this whole thing. With rare exception, for each medical personnel we met, I wondered just slightly, as we introduced ourselves if they might possibly be anti-gay. Did they look at us askance? Will their personal beliefs affect our care in any way? While I don’t generally care what people think of us, as many LGBT parents know, that changes a little once you have kids. I tend to be more aware of whether Lenox having two mommies will somehow bring differential treatment upon her.  In a medical setting that is the same but magnified. Are the nurses assigned to us based around their willingness to take “the gay couple”? Are the social workers visiting us more than the others? Are they uncomfortable with two moms sleeping on the pull out bed in the room? Interestingly, I can say there were very few times we felt possibly treated differently. I feel that the staff everywhere has been open, comfortable with us, friendly, etc.

Like in other situations we lesbian moms encounter, there is of course the insensitive but ubiquitous “which one of you is the mother?” Uhm, we both are. Which usually elicits responses from “cool” to “huh? I don’t get it” (really?) to even more offensive, “but, which of you is the REAL mom?”  Now in a non-medical setting, we would just say “we BOTH are” and let it go at that.  But in our case, especially in the initial interactions with a different area of the hospital, there is an extra tension to the question. If we answer that question with which of us is the birth mom (which is usually what they mean), are they asking to try to exclude Liz in some way if we answer “wrong”? Is there a medical reason they might need to know? Will our answer somehow change their level of deferral and respect to the non-birth mother?

We are lucky that we have not once experienced anything we would consider overtly anti-gay. We have noticed, at one ER visit in particular, that the doctor (not our regular oncologist who we love!) seemed to speak almost entirely to only one of us, body language turned toward that mom, and if not consciously excluding the other, at least not making any eye contact with her.  We wondered if she thought the other one of us moms was maybe just a family member in the room. Interestingly, when that same doctor came back later, she was very inclusive of both of us. (Our theory was that she checked Lenox’s chart which we assume relays primary caretakers, and noted her error). Over all, in our Austin locales, we have been totally out, and both been treated just as we should be – as her two parents, as the momS we are!

So has it been different? Yes, but so are the experiences of every cancer kid’s family.  Like any other family unit characteristic, it just adds layers of uniqueness to the experience. Stigmas, misperceptions or stereotypes are just as likely to pop up for mixed race families, for instance.  Uncertainty for medical staff on how to treat the families, are just as likely to pop up for divorced parents, step-parents, etc. Is our LGBT family status any more challenging for us to maneuver than a set of parents with a language barrier who may even be relying on their child, the patient, to interpret the doctor’s news? Or than an hourly wage earner parent who loses wages for every hour at their child’s bedside? Or than a single mom with several other children to take care of while wanting to stay at their cancer kids’ bedside?

All I can say with certainty is that a child’s cancer diagnosis is harrowing for every parent, and it is all terribly personal and unique. That being said, I do think our worries and stressors are different, even when dealing with the most open-minded of medical teams.  So I do wonder about you other 299. Are you really out there?

Picking Up the Story Line

25 Apr

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When Lenox was first diagnosed with ALL, I was reading a ton about cancer, including, among other things, a memoir from a woman whose 3 year old son had the same diagnosis as Lenox. Her memoir was insightful for me and I appreciated getting a picture of what we might expect to face based on the experiences they went through. And then, right as her son was transitioning from his really intense consolidation phase into maintenance (the first 6 months or so), the book jarringly ended. I was aghast – how could the author think I didn’t need to know what was still happening and what would happen to her next? (translated as what would happen to us next). Did her son suddenly take a turn for the worse? What transpired that made the story just peter out…?!? I was frustrated with her and the publisher – how could they end it that way? – I just didn’t get it.

But … everything comes full circle and now I get it! I know why she quit writing, or at least can speculate. Because I was just reflecting on why I have also quit writing and posting to our blog. I had found the writing not only a great way to share but also cathartic and many of you have asked why I stopped? Like my angst about the memoir’s abrupt ending, some of you may have felt similarly about Lenox and our “story” – what has happened?! How could I have just dropped the “story line”? So let me tell you why the writing stops…two reasons.

First, exhaustion. Mental exhaustion that feels almost physical – as though it’s in my bones. (For you social work friends, yes, I realize that with my depression background its a mighty tenuous line between the two.) As many of you have experienced, our bodies and minds seem to carry us through the worst of times with a seemingly endless reserve of mental and physical stamina. As long as we truly need to focus on a crisis, our body will put itself second.

For us, as we pulled out of that arduous six months of cancer diagnosis and treatment crisis, we entered the celebratory period of being done with that phase of treatment, getting back to what we thought would be “normal” and the holidays. We also had the excitement in late January of the Make a Wish trip and the big excitement of Liz and I both going back to work full time (thankfully, we are both challenged at work and happy to be back). And then my body (and even more my mind and emotions) seem to have said… “I am done now, OK? You wore me out!” Like a gradually placed ton of bricks – my body and mind recognized that the crisis had been averted, that big “returning to normal” changes were behind us and… Fizzle. The “oomph” that kept me going was so done.

So my new normal seems like a balloon mostly deflated – just bumbling along, having energy for what is most important, and um, well that’s about all. So We often have sinkfuls of dirty dishes; unvacuumed but well played on rugs; and cars full of the flotsam and jetsam of parenthood. Texts and emails I receive are often read, but then distractedly forgotten. I seldom cook. I have an inability to keep a lunch or coffee date (or running date) with friends, even when I really want to go! Parties and evites sound great, and then I never get them on a calendar and only realize days later that, oh crap!, that was this past weekend, not next weekend! As well, I seem to be unable to even engage with others to coordinate, and follow through on, play dates or outings. I realized how drained I was when we were shopping for clothes and all I wanted to buy was pajamas! My most appalling, but most secretly escapist, sign of perhaps needing a “break” from things for a bit is my full-fledged immersion into Vampire Diaries (a high school vampire TV series) and into Young Adult fantasy fiction (vampires, werewolves, alternate realities, oh my) Really?! Yes, I am pinking in embarrassment as I say it, but man that is some totally fun cheesy reading! I am at least moderately gratified that I read that dross while also reading several decent non-fiction selections.

I won’t speak for Liz but I can tell you what I observe about her – that while she seems to feel some of the same fatigue from the whole process, and feels the same apathy about housework as I do (but she always has :)), she has been great about channeling her time into really focusing on running (looking good LaLa!) and reading up on management books (see don’t vampires and wherewolves sound far more engaging?).

Second, what you have been scrolling down to find out, is that there is really only one reason the exhaustion was even permitted to sink in, which is that Lenox is very good! I have a friend who has been in treatment for Multiple Myeloma, and she says it best about cancer blogging and updating loved ones: “No news is good news.” May be cliché, but REALLY I am so excited to have NOTHING to tell you! Our world, with the exception of intermittent jolts of “cancer-ish” things, is a typical routine, just like yours, of school days, work days, swim lessons once a week for the little fish Lenox (who can now swim about 10-12 feet without assistance), getting queso at our favorite restaurant, dance class on Saturdays for the little ballerina, and as always, rounds of dinosaurs, snuggling, laundry and Play Mobile toys. Like all kids/parents, in the evening we do dinner, bath and pajamas; we just add a quick slurp of chemo “juice” each evening.

Until recently, We had only been going to the oncology clinic about once a month for them to check Lenox’s blood counts, give her an IV infusion of pentamidine (anti pneumonia medicine) and then usually some other chemo shot that we are slated for. Recently it has been more frequent as we start our 2nd cycle of maintenance, but should go back to less frequent. Periodically, we will have a visit to the actual hospital for a “day surgery” which, as you wise educated readers already know, is her going under anesthesia so they can do her spinal chemo. And today wraps up a week of steroids. But mostly, we just live a normal day to day kid’s life… sometimes it seems so normal again I can almost forget that our baby is being treated for leukemia.

As I mentioned we occasionally have a “cancer-ish” incident arise that makes us realize in a flash that we are indeed living a new leukemia normal, which of course would have its learning moments. A few examples:
* Lenox has a few bruises and is tired for a day and I panic thinking the leukemia is back.
* When going for what is really just a once a month clinic visit, Lenox due to the infrequency, gets more upset about having her port accessed and asks if the leukemia is back.
* When other parents/co-workers ask “so she is all better now right?” I am totally unsure what to say – yes, she is better, liking school and swimming like a fish — but she will have treatment for 2 more years and takes chemo every night… it feels like a limbo.
* At the parent teacher meeting, I learn that Lenox seems very absorbed with her port and anxious about other classmates touching her. Which worries me of course.
* Learning that a side effect of one of the meds, is that her temp can drop all of a sudden and we just need to bundle her up in layers and layers to get her back up to “normal”.
* Writing a blog post that when I re-proof discusses chemo and pentamidine and clinics, in the same time as saying wow, things are pretty good – WEIRD!

In sum, I posted to 1) give an update, 2) apologize for the abrupt end to the blogging, but now you have a sense of why, 3) to affirm that in our case, No News is Good News, and 4) to explain for those local folks, that in spite of Lenox being well, I am now pooped, ergo quasi-reclusive and relatively unresponsive. I am trying to get better about it!

Thank you again for your massive support and love for Lenox and your patient forgiving friendship to the moms. Also, the Cure Search Walk will be September 29, 2012, and since we have much planning time we want to have a bigger showing and raise even more money. We would love as many of you as possibly can, to join our team, raise funds or donate, and walk with us! We love you all!

Make a Wish Trip Post

12 Mar

Wow and wow!  What a fabulous once in a lifetime experience!  My major apologies for not posting sooner.  So many have asked how the trip was and asked for an update and finally I am posting – and its really short! We can blame the delay at least partly on Liz; I had to cull through more than 3,000 photos she took. Regarding the brevity, since a picture tells a thousand words, we felt the photos really tell most of what we wanted to share – which is that it was an unforgettable experience and that Lenox and Grace both had a wonderful relaxing and happy time. Because I lack much tech-savvy I wasn’t up for trying to figure out how to post a big batch of pics to the blog, so instead they are on Shutterfly and here is a link:  http://lenoxsmakeawishtrip2012.shutterfly.com/. Go to Pictures and Videos and then See Album.

The rest is captured pretty thoroughly in the pictures – there are captions to each picture.

For all of you who gave us tips and advice, thank you! To Carly and Grace, thank you soooo much for helping make Lenox’s wish come true! And thanks is not enough to the generosity of Central Texas Make a Wish and Give Kids the World.