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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.

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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.

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Maintenance…. Hmm, What is That?

5 Jan

Many of you have asked what happens next and I am finally delivering on my promise to do a post about it.  First, leukemia treatments vary based on a myriad of factors and which studies, if any, a patient is enrolled in.  In Lenox’s case, she had only 3 phases of treatment – Induction, which was the first 29 days; Consolidation, which was the 6 months we just wrapped up; and Maintenance.

The thing about childhood leukemia is that, with all of the great medical advances, it is not hard to get a patient into remission; the challenge for researchers has been figuring out the ideal combination of factors to keep it in remission. Lenox was medically considered in remission during Induction, as is the case with many patients.

As quoted from the National Cancer Institute: “Among children with ALL, more than 95% attain remission and 75% to 85% survive free of leukemia recurrence at least 5 years from diagnosis with current treatments that incorporate systemic therapy (e.g., combination chemotherapy) and specific central nervous system preventive therapy (e.g., intrathecal chemotherapy with or without cranial radiation).

It can’t be emphasized enough that the great results are indicative only if you fully follow the treatment plan – which in Lenox’s case is to follow through vigilantly with Maintenance. The Maintenance phase means just what it implies – we are striving to “maintain” her remission status.  Lenox’s maintenance phase lasts 2 ½ years from her diagnosis. Lenox was diagnosed July 9, 2011 so she is estimated to complete Maintenance in just about 2 years from right now – mid-January of 2014; that is just a few weeks before Lenox’s 6th birthday.

Maintenance is cyclical so we will go through the exact same cycle every four months. With 2 years left that means we should have 6 of these cycles. A 4 month (or 113 days) cycle looks like this for Lenox:

  • First day of a cycle is a day surgery for intrathecal (spinal) methotrexate (one of her types of chemo drugs) and an IV push of vincristine (another chemo drug)
  • First week of a cycle is 7 days of steroids
  • 8th day of a cycle is another IV push of vincristine
  • Every day of the cycle is oral mercaptopurine. This is one she has been on the last 6 months orally at home as well, but the dosage is nearly doubled for Maintenance.
  • Once a week is oral methotrexate. This is the same chemo drug she was getting in very high doses over 24 hours during her 6 hospital visits during Consolidation phase
  • Once a month is a clinic visit for pentamidine. This is a ½ day clinic visit usually as it’s a slower IV drip and then they watch her for awhile afterwards. This is a drug that protects her from a type of pneumonia that she is susceptible to and replaced an oral med that she HATED taking.
  • Around 2 ½ months into the cycle (Day 85 for those counting) there will be another day surgery for intrathecal (spinal) methotrexate

While that may look daunting, as it was for us at first, if you really look it over it means a rough first week each cycle, but otherwise equates to only about 4-6 visits per cycle depending on how we are able to time the monthly IV drip. In the beginning, we will likely be going every 2-3 weeks just to get counts done, but they said if our initial treatment goes well, we may be able to go in just once a month! How about that!

Right now Lenox is still taking all oral medicines crushed in juice. Not sure if I ever mentioned it but we purchased a nursing facility grade medicine crusher and it has been the best purchase – med prep has gotten infinitely easier. Lenox has indicated an interest in learning to take pills so we will get working on that with some “training”. Wow, how nice for her if she can learn that – keep your fingers crossed.

 

 

Back to School…Yeah!

5 Jan

Lenox – All Things Lenox Including, but not Mildly Limited to, the Leukemiasaurus:

What a breathtakingly brilliant day for the Boston Family! I will warn you ahead of time – this post is a bit of a love-fest.  Today was Lenox’s first day back at school. I know I have said this before, but it definitely warrants saying again – I LOVE St. Georges School! Prior to today I had met with the Head of the School  to chat about Lenox’s return. She was so supportive but also balanced and reasonable. She, and Father Kevin separately, said what we needed to hear but may have been hesitant to hear, which is that we want to minimize the extent to which Lenox is treated differently. She will feel less singled out for her illness when she knows the rules all apply to her and that expectations of her are the same as others. Her being treated differently will not help her, us or the classmates in the long-run. I knew that intellectually but after 6 months of totally unique special treatment it was good to have someone remind me of how much “normality” will help her.  That meeting allayed most of my return to school jitters. Then yesterday Lenox’s wonderful teacher Ms. Cindy also came by the house to visit us and help get Lenox prepared. She brought pictures of the class doing different activities and of them with their families to help refamiliarize Lenox. (Love Ms. Laura and Ms. Cindy!)

So, today, Lenox’s clinic sent a Child Life Specialist to speak to the class. It bears repeating that the children’s oncology clinic that Lenox goes to is just so absolutely supportive and comprehensive in their care of their patients (Yes, I love them too!)  So at 9 am, Lenox, Liz and I show up in her new class room. She had been in a previous class with a different teacher when she had to stop attending school so this was a new room.  Her classmates (most of whom were in her prior class with her) were already seated on the floor for the presentation, but quite a few of them jumped up and swarmed around Lenox – saying hi, patting and touching her. They were soooo excited she was back.

The clinic’s Specialist, Ms. Cynthia, did a superlative job in presenting to the class of 3-4 year olds. She spoke in very basic terms about leukemia and cancer. She then spoke to them about Lenox having a port. She had a big doll that has a port so held it up for them to see. She then asked Lenox if she would like to come up and talk about her port. Lenox, as though no time had passed at all, leapt up to the seat at the front of the group and showed them her port (her coat was on so they didn’t see it well, but she was so comfortable at wanting to show it to them). Ms. Cynthia also spoke to them about how to be gentle with Lenox’s port and then covered all about the importance of hand-washing to help make sure Lenox doesn’t get sick. They listened raptly and when Ms. Cynthia asked them questions, they really engaged in the discussion and raised their arms so high to get called on. Throughout the session, Lenox stayed at the front of the room and when Ms. Cynthia would say something Lenox would then provide her “personal account” of that issue:

  • Ms Cynthia: Lenox has a port and when she goes to the clinic they put on cream and then use a needle to attach a tube so Lenox can get medicine and have her blood drawn. (paraphrased)
  • Further Topic Coverage by Lenox to her Class: “ They poke me with a butterfly and it hurts – sometimes I cry. They give me medicine that makes the leu-kee-nia go away. I had a bad needle one time but then we didn’t have to go back to that room again.”  Also: “Sometimes I get white medicine that makes me sleepy and then I wake up with a boo-boo on my back.”
  •  Ms. Cynthia: The medicine Lenox takes is very strong. It can sometimes make their hair…
  • Further Topic Coverage by Lenox to her Class: Interjecting Ms. Cynthia, “I cut my hair like a boy hair cut, but now I am going back to school and my hair will grow like a girl.”  And: “The medicine sometimes has saline and it tastes really bad.”
  • Ms. Cynthia: We always need to wash our hands. Why is that?
  • Further Topic Coverage by Lenox to her Class:  “Germs! If I sneeze in my hand and we touch hands then you get sneezy germs. We are supposed to sneeze in our arm.”

One other fabulous part of the end of the session was that Ms. Cynthia asked the class how they could be good friends to Lenox. Arms were waving in the air to be called on and so many very intently talked about how they would help take care of her. It really made me so appreciative of the  St. George’s extended family. The kids in the class are such truly good human beings and genuinely want to help  take care of Lenox. I feel so very blessed to have had many of the St. George’s parents help take care of us the last six months with meals and other help and to now have Lenox directly in the doting care of St. George’s students and teachers.

Liz and I were totally blown away by Lenox and we both were a bit weepy.  One of the first things Lenox said in front of her class was “I have leu-kee-nia” – it was so bittersweet to hear Lenox so clearly just state that to her class. So bitter that she has to even say those words at all, but so sweet that she has accepted it, understands it and can talk about it.  Liz said that hearing Lenox say that took her back to the day we really confirmed for the first time that Lenox had leukemia.  What she said to her classmates today was her synthesis and perspective of what the last 6 months have been about FOR HER – she said them so matter-of-factly and with a smile (mostly) as Liz and I just sat in awe of our little girl. Lenox was just amazing speaking before her class – she was so confident and brave. Probably no other time has so fully driven home for us how much she understood and processed, and remembered, of what has gone on.  The whole session was emotional for us to watch.  Our little girl is just so totally fabulous!

As the session winded down,  Ms. Cindy asked the class to get back together for circle time on the floor. Lenox got down off of her chair and sat on the floor; she immediately was surrounded by some of her closest class-mates. We stood at the edge of the room, waiting to take our cues from her. Would she want a lap to sit in? Say she was ready to go home now? Cry? But she just looked up momentarily from her circle of friends, smiled at us and waved goodbye. Wow.  Just Wow!

We picked Lenox up around lunch time. We had her first clinic visit of the New Year. It was one of the smoothest appointments ever. Lots of good energy in the room from the various nurses/staff.  We just love her regular nurse Karen, and “Dr. Christina” who really has taken care of us and seems to take authentic pleasure in seeing Lenox. (Love them too!)  Her getting accessed went about as smoothly as it ever has, although still with a few tears. But for de-access she helped Nurse Karen, counted to 3 and it was out – No Tears! Also, Lenox had been on steroids all this last week with her last dose just this morning so her counts were HIGH (ANC more than 12,000) which was great. And best news of all we don’t have to go back for a visit at all for 3 weeks! (Knock on wood :)) That will be by far our longest stretch of no medical visits since July! Lenox was giggly and happy as we left the clinic. Just what a great day!

In other Lenox news, she starts a dance class (ballet/jazz) this Saturday with one of her favorite friends, Josephine. I am curious to see how it goes as she found both pairs of shoes “very funny bad feeling” and refused to wear them at the store. I am hoping that the fun of the class will overshadow her shoe aversion.

The Moms (in the Margins): Liz has now officially been running for more than 8 weeks and is feeling great (and looking great too, if I might add).  We are both officially back at work full-time starting tomorrow. Our schedule is each working 4 ½ days a week – which allows Lenox to go to school just 4 days a week. On those 4 days, I will be going in at 7 and leaving around 3:30 for an early pickup, and Liz will not go in until close to 9 so Lenox doesn’t have to get to school too early.  We are both excited to be getting back to work – it looks like I will be taking on a new area / project and am very energized and  eager to get that moving and successful.

Kudos and Shout-Outs: 

  • See Love Fest Above 🙂
  • Thanks Gigi for your visit and all your help with my household projects!
  • Thanks to Grace for coming to spent a week of her holiday  vacation with us – we had a great time!
  • Thanks to each and every one of you who has prayed for Lenox, and included her in prayer groups. The prayers have clearly been working!

Short and (Super) Sweet

21 Dec

And it’s a cut! Today was the LAST doctor appointment under Lenox’s Consolidation phase. The last post was the last overnight hospital stay and today was ta da … The penultimate clinic visit. I won’t get into details that the 4 hour visit should have only been 2 hours, Lenox’s seeming OD on Benadryl (not really, she just slurred and conked out) or that undoing her port was a bear because there were some fun parts of the visit. We brought a few small gifts for our fave nurses/docs and brought home made cupcakes and cookies. We also did arts and crafts and they had a clown show.

Next Step: When we go back on the 28th, it will be her first day of Maintenance and will kick-off with a day surgery for spinal chemo.

Lenox’s Re-write of “Hush Little Baby”: Hush little baby don’t say a thing, lala’s gonna buy me everything! Ugh!

Plan to post next time with more explanation on what Maintenance is like and Lenox’s new year plans.

Love to all!

Lots of Good News

13 Dec

Lenox and the Leukemiasaurus: Yeah! We are just at the tail end of  this intensive 6-month Consolidation phase! Last week (Monday through Thursday) was our LAST  (Yes, Last!) planned overnight hospital visit!! We still have a few more weeks until Consolidation is officially over; The Culmination (Day 133) is December 26.
I would  love to say this last visit was a breeze but while it had some great highlights, some was tough for Lenox. After she was through with chemo, but was still getting fluids to flush her system, her line (aka butterfly) quit working so we had to do two of her least favorite things – remove her bandage and redo her port. It took about an hour oftrying to get it functioning again. She was so distraught she threw up and was having trouble breathing. It was so sad/sweet because she was trying really hard to be cooperative thru her tears, saying yes to the nurse, but it hurt and scared her so she just couldn’t stop crying.  She was so exhausted afterwards and in a very Geary gentle voice, nestled against Liz, she said “LaLa please sing to me.” Which La did. When Liz started to wrap up the rhythmic lullaby, Lenox asked for more singing and then very peacefully fell asleep.
On the fun side…the hospital has always had wonderful activities available for the kids, but for a myriad of reasons we have not participated much. This time we played bingo (from our bed!). The in house TV station was tuned to the “bingo caller” and when you got bingo, which Lenox did, we called up and she yelled BINGO in the phone and it was aired on the TV. They then came by later with a prize. We also has some clowns come by the room – I was skeptical how Lenox would receive them, but she really liked it and asked the to come back again. Coolest, though, was that Lenox got to “Skype” with Santa from the North Pole. He knew all about her interests and Lenox asked him about his reindeer and how he gets inside where there are no chimneys! Pretty creative idea for the hospital to do that and it was a good Santa!
One of the other “traumatic” events was what we will call the “Poor Heather” incident. The trauma was not to Lenox but provided by Lenox to, you guessed it, one of the medical team named Heather. Heather is a very upbeat happy lady who each morning checks in on us in advance of medical rounds and then usually accompanies the oncologist on duty with rounds. For an array of known, and unknowable, reasons Lenox has never taken to Heather. In response to her perky “Hiya there sweetie, aren’t you soo cute today” intros, one of Lenox’s trademark grunt-shrieks was common and Heather came to expect (although I am sure did not like) that routine. But Lenox, in going out with a bang and not a whimper, made sure her last exchange with Heather was really horrible. Not only did she give Heather the higher decibel, more punctuated grunt shriek used for special occasions, but would not let her touch her and said “not you” repeatedly. Heather kept trying to engage her and sweet talk her but Lenox would have none of it. As Heather backed up a bit, Lenox proceeded to castigate her and closed with “Go Away! I never want to see you again – send someone else!” or some similar sentiment. I could tell she was on the verge of tears. Ugh! That was definitely an “I am appalled by my pre- schoolers atrocious manners” moment. Needless to say, I apologized to her several times that day (in the hallway and never where Lenox could see – so I am a wuss 🙂 ).
As we were discharged that last day, several of the nurses congratulated us on our last visit but it was pretty low-key as we rolled out with our loads of gear.  Liz said it seemed anticlimactic, and it was a quiet departure, but it felt pretty awesome to be discharged knowing our foreseeable future does not hold overnight hospital visits! ( at least mot planned ones). When we tried to explain the significance to Lenox, I am not sure she fully got it (as we still have to go back for day surgeries regularly) but she said “I will miss the play room up here.”
Other Lenox News:As I mentioned in an earlier post, we met with the Central Texas Make a Wish Foundation recently. The visit started out a bit rocky, but in no time Lenox was affectionately calling the gentleman from the foundation “Aunt Noe” (she has an uncle Noe but this was not the guys name) and coloring and playing Dino’s with the lady. The visit first entails them getting to know her a bit by playing and asking her and us some questions. Part of the purpose is to make sure the child has not been coached into a wish the parents actually want. When asked her favorite restaurant, her answer ( uncoached I swear) was Pappadeaux!
Then they told us that same day that Lenox was being granted her wish to go to Disney World to see Cinderella, dinosaurs, Harry Potter, and the other Disney princesses/characters and theme parks! The wish includes an all inclusive 6 night trip to Orlando, FL which includes airfare, rental car, food, lodging (at a Ginger Bread House!!), admission to all of the theme parks and even souvenir pocket money! The Ginger Bread house is a 2 bedroom condo and it is on the “Give Kids The World” campus. The village itself is a mini theme park. It has a really cool pool and a miniature Dino golf course, train, and an all you can eat ice cream bar! And – super amazing – she will get a special wrist band that gives Lenox first in line privileges (no waiting in lines at all!) and if she wants to stay on a ride, she can just ride it over and over!
Since Lenox is an only child, they also asked if she would like to take along a special person and Lenox immediately chose her cousin Grace to go with us. This means that the full “package” of the wish covers Lenox, Grace and Liz and I. Just OMG! The icing on cake is that we were able to schedule it for her birthday, so she will actually be there on her 4th birthday!
This is an amazing gift and opportunity. Before Lenox was diagnosed with leukemia, We were planning to take Lenox to Disney World this winter/spring but put those plans on hold. We didn’t think we would be able to afford this trip anytime soon due to all of the medical expenses, but we have been blessed with this opportunity! As we mentioned before, the foundation is not only for children that are terminal, but for children with any life-threatening illness.
As you likely recall, Grace and Lenox have become close since her diagnosis. Grace visited Lenox it seems at least once a month since July and most recently spent 6 days with us over the Thanksgiving break! Grace lifts Lenox’s spirits when she is here and is a great playmate for Lenox. Grace pays attention to Lenox and is flexible with games and the ipad when Lenox gets temperamental. Grace reads to Lenox and taught Lenox how to play a lot of new ipad games such as Fruit Ninja complete with the kung-foo sound effects! Our family has come to love Grace a lot and look forward to her taking this trip with her! Our closer relationship with Grace, her sister Michaela, her mom Carly and her grandma ( Liz’s sister) Rose, as well as Lenox’s Aunt Terry, who is here often too, are one of the real blessings of these last months.
So you ask, what did Lenox say about the wish?! Was she thrilled!? Um, not really at the time. In spite of chatting about Disney and having shown her pictures, Lenox has not grasped what Disney World is – really what 3 year old could even fathom such a place exists until they have seen it! When “Aunt Noe” told her about it she just looked at him and said “I have a dinosaur on my head!” Really!?   Not sure the team from the foundation got quite the gratifying child response they might have wanted!
Other Holiday News: Santa sent us an Elf on the Shelf. Good thing because after hearing about it from her cousins CoCo and Shane, she would been pretty disappointed not to get one. As is “requested” by Santa, we had to name her (ours is a girl) and Lenox named it Girly Lulu. Initially Lenox was skeptical but seems to have gotten caught up in the excitement of finding the elf’s new location each evening. Alas, she does not seem to buy the need for good behavior; when Liz told Lenox the elf had seen some of her poor behavior, she said “no, she was facing that other direction so didn’t see what I did” so now we are looking for spots with vast lines of sight.
Another great moment recently was during decorating – Lenox and Liz put the majority of Lenox’s vast dino collection on the tree.  It actually looked pretty neat as theme trees go and Liz and I wanted to keep it that way but Lenox wanted her toys back!
The Moms( in the margins):  Liz IS A RUNNER! She has been running regularly now for more than 7 weeks!!! I am so proud of her – she is looking and feeling great and riding that high of having found something she really enjoys that makes her feel great!
We are both ramping up to get back to work in January. I am starting to get a bit anxious about our next phase starting. As we end Consolidation, we begin Maintenance the very next day, December 27. We will shift into Lenox going back to school and Liz and I back to work. As you all know I am a planner by instinct and profession, and trying to plan the unknowable is hard (duh). But really, there are still quite a few unknowns. We don’t know yet how much Lenox’s physical stamina will allow her to be back in school and to what degree,  we don’t know how she will do emotionally after having been with her mommies 24-7 for 6 months, we don’t know how she will react to the ongoing meds she will be on and when, or how often that will require us to miss work, and we don’t know what supplemental/additional appointments she will need that may be recommended as a result of the nuero-psych exam. I wonder how,being back at school will be for her. Will she show off her port as she sometimes does and just pick up where she left off? Will she feel sad about her hair if kids ask? Will the afternoon playground teachers notice a fever or odd symptom? Will they call us quickly? Or,conversely, will they call at every sneeze? (Laura, this is just my mind running away with me – I have no doubt we will navigate this just fine as a team!) And I have an irrational thought that kids may avoid her or think that what she has is “catching”…I know as soon as we just get through January this will all just settle down into another “new normal”.
My recent big accomplishment is that I did a marathon (hah- not really – just figuratively). My paperwork exercise was that I slogged through the billing and accounts for each of our separate 18 accounts with the hospital- they do a different account for every admission and for every day surgery – not by patient.  I  reconciled them against my records, figured out what was eligible for my flex spending account and then talked through it all with the hospital and FINALLY a) have it all understood b) am in concurrence with the hospital on each account after some adjustments we both made, and c) actually have my strategy worked out to get them all closed out! I can’t imagine how many accounts we will have by the time our 2 more years are up!
Kudos and Shout Outs: * to Dakota and Shane- and their folks of course – for sending another great care package. They have sent a package of separately wrapped gifts –  to use as motivation with Lenox – for each hospital visit. They are always great and really do get her to do things!* to Kristie, Diane and family for watching Jonah on this last visit.
Love to all and Happy Holidays!

The Strength of an Egg

13 Dec

  Note: this was written by Juliet Frietag, but Liz saw it on another blog and gave it to me in a sweet card (she got points for that 🙂 ) . It is such a great excerpt I wanted to share it.

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
by Juliet Freitag

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