Lenox Slays the Leukemiasaurus

Austin CureSearch Walk is this Saturday raising funds for children’s cancer research. Our team, Love for Lenox, has done an awesome job on recruiting and fundraising! We have 28 registered team members and have raised over $5,600!  If you still want to register to walk, or just donate, go to http://www.curesearchwalk.org/austin/loveforlenox. (See link on the right.)

The walk this Saturday is at Lake Park at Mueller. Since we live in Mueller, we will be walking over to the Walk registration area around 8:20 or so. If you would like to come by for donuts and coffee beforehand, we welcome you to. Our address is 4041 Threadgill St. Please come no earlier than 7:45 and we will head over around 8:20; if you haven’t come by then, just head to the Lake Park. We will be near the registration table.

We did not do shirts but Lenox has asked that we  dress in “Green, purple, pink, white or yellow” so feel free to wear t-shirts in one of those colors.

Thanks again for all your contributions and support! See you Saturday!

Love, Liz, Brooke and Lenox

“If you see a bald child, smile.  Look their parent in the eye.  Let them know you understand.  Be aware that you are looking at greatness.  Know that kid is amazing and brave and so very, heartbreakingly vulnerable. ”  — Unknown Author

Lenox & the Leukemiasaurus:

Yesterday, Friday, we got back from our second hospital visit. It went better than I could have hoped in that the port worked beautifully, she cleared the chemo pretty rapidly and she actually relaxed a bit and had (dare I say it) fun. She was far more friendly with the medical team,played in the playroom, played hide and seek with us in the outside labyrinth, hung out in the halls a little with the nurses and was agreeable about most of her vitals, etc. We also had a really great visit from Father Kevin, from St. George’s. He came at such an opportune time when Lenox was just heading out to cruise around in her little car. We went and did fun shows on the stage (who knew Father Kevin was such a great entertainer), read in the library, visited the pet therapy dogs and then wrapped up with a great prayer and blessing for Lenox (which she squirmed through quietly). She knows Father Kevin well from chapel each week at school and she really enjoyed just having him hang out a little while with us. Thanks Kevin!

Lenox’s counts at discharge were great and still high enough to play, go out and about, see people,  but our new lexicon addition for the week is “nadir”. While in general terminology it means the lowest point of something, in chemo-speak it means the point at which white blood cell counts will get their lowest in response to a specific chemo drug. In this case, for high dose methotrexate, the nadir is 7 to 10 days, meaning we wont see how low this round will take her counts until about next weekend. Maybe not much at all we hope!

We are gradually becoming more acquainted with some of the nurses and medical team as well as some of the other families we have seen on the ward repeatedly. No longer in a shell shocked stupor we chat with other families, laugh with nurses, and empathize as we see new shell shocked families there for the first time. There is a weird awkward intimacy to a children’s hospital in the late evening or early morning —  you have this group of parent caretakers  who are sleeping in hospital beds and sofas while their child is admitted, caring very little for their own appearance or upkeep, focused solely on their child; you see each other in pajamas, with bed head, dealing with very tough emotional issues, cooking at the microwave and having hard conversations with family.  It is similar with the medical team – the nurses are on their shifts and engage with you at unexpected times: cases in point — the odd feeling of awaking to see a nurse stealthily entering the room to try to check on Lenox without waking us up or my being very conscious of not having yet brushed my teeth as the doctor on call came by to talk but not willing to pass up a chance for interface with the doctor (even if she had to hold her breath!)

Hospitals and illness are such an equalizer and melting pot. In the background on 4North (the Dell Oncology ward) as each family deals with the very scary and similar situation of their child having a cancer diagnosis,  distinctions become not about income, race, ethnicity, religion, or sexual orientation but fade away and new distinctions arise — cancer type and prognosis, risk types, age of your child, what time cycle for visits you are on… those are the things that make you alike or different. Those with good diagnoses being ever grateful its not one of the other cancers and feeling somewhat guilty when you talk to another parent and their child has a less optimistic prognosis than your childs. Those with the less optimistic prognosis hunkered down even more than we are, serving as the role models for how to handle this even when its the toughest possible. Its uplifting to see traditional groupings fade to the background, but sad that it takes something so devastating to blur those lines.

The Day to Day: Overall Lenox’s energy levels are great and she is the best we have seen her since her diagnosis. Sunday night before going to the hospital she rode her bike to her friend’s house and ran around all crazy and fun for several hours while the Burns family hosted us with pizza and beer (yea!) and then she rode home too.  When we got out of the hospital on Friday, Lenox’s Aunt Rose, Uncle Noe and cousins Grace came to visit from Houston. This was a special visit too because Grace is turning 9 this weekend. For her birthday, when her family asked her what she wanted, she said she wanted to come to Austin to see Lenox. We made Grace a cake and she and Lenox had a great time jumping on the trampoline, riding her bike, going to the playground, playing on the ipad, etc.  Lenox has also taken to chatting on the phone with her cousin Carly. Oddly she does not like to speak on the phone much normally with anyone else, but will randomly just say, “Can you call Carly for me to talk to on the phone.”

Moms in the Margins:  Well, Liz seems to have abandoned the skateboard idea and made the sensible (and safe) decision to put up a dart board at home instead. Works for me! This past Monday, I worked about a half day and am going to be heading up a project, mostly remotely, from home. Am excited to get back into some thoughtful non-medical thinking again.  Liz and I both have fallen for Glee, which we had never seen, so are watching all the prior episodes. It is such a short upbeat escape. The other thing Ihave found to be totally therapeutic (I am reddening with embarrasment as I type this) is Lego Building Kits. You can get so caught up in just following the step by step and end up with these amazing products.

I had the chance to go to lunch last week with a fellow mom of a cancer kid. We were introduced through a co-worker of mine. Her daughter is further down the ALL treatment path so I am following in her footsteps in many respects. It was great to be able to trade notes, see the path ahead and talk about leukemia with someone who is living it too.

I have read often in our books and resources that the parental and family relationships can really get tough when a child becomes seriously ill;  I am thankful that Liz and I had a great strong foundation going into this because it really has its moments. Those first few months you just meld together in this strong familial coping mode shoring each other up, complementing each others strengths, etc. But then as the overwhelming fear abates and the focus is jus entirely in her care, we challenge each other more, criticize, and snap at each other. Being together 24 / 7 is tough probably in any circumstance and more so in this case. Liz and I discuss it enough to realize its not personal, not long-lasting and that this is tough for all families. We have to see this as another one of the hard parts of the leukemia and see the silver lining as a way for making our relationship even stronger. I can’t imagine going through this with anyone else as my partner.  I love you LaLa!

Sobering Statistic: Lenox will tentatively end treatment in December 2013, at which time, as she enters 1st grade, she will have been in chemo treatments for leukemia for roughly half of her life.

To Come: Just a few up and coming tidbits. We will be doing the Cure Search walk on Saturday, September 24. Come support us by joining our team or donating. We also are winding down our care calendar. Thanks to everyone who has taken care of us, fed us and embraced us. As we get more into this new normal, we feel less in need of the help and with the local fires there are so many others whose needs are more immediate than ours. The generosity has been amazing and I truly can’t imagine having gotten through those first few months without the help. We may still occasionally ask individuals to help us out with meals when in the hospital, but we will just coordinate that directly with folks.

Kudos and Gratitudes:

* Thanks so much to TDHCA for dedicating their quarterly blood drive to Lenox! Having such supportive co-workers is such a blessing!

* Thanks to the Burns for a great laid back evening of beer and pizza and crazy girls running around naked.

* Thanks to the Carson cousins for sending such a well timed gift package – a gift a day while we were in the hospital and lenox loved the gifts!!!!

* To Jeanne, for dropping by with a perfectly timed surprise dino pillow for Lenox.

* To Lois for helping us get packed and organized, and hanging with Lenox, while we packed for the hospital, and

* To Grace for wanting her birthday wish to be with Lenox!!

* And so much thank yous to my sister, Sissy (aka Christy), who somehow gets lots of my teary calls. I know that must be hard to handle too so thank you and I love you!

Love to all of you and thank you for being part of this journey with us!

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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!

Lenox Slays the Leukemiasaurus: So Lenox was quite a trooper through this 1^st hospital visit of Consolidation. After the morning spinal procedure, etc. they did a 24 hour drip of a strong chemo drug called methotrexate. That ended around 8 pm on Wednesday and then they do what is called a “leukovorin rescue” which helps her body rebound to some degree.  The docs have to see that pretty much all of the methotrexate is out of her body and the leukovorin helps expel it. Tuesday and Wednesday night were tiring, but pretty smooth. The whole visit Lenox was obstinantly stubborn about taking her medicine. On Wednesday, I think Liz and I (and occasionally the nurses) spent about 8 hours trying to get her to take the equivalent of 3 Tablespoons of meds. The hard part is that because Lenox had learned how to be a very good spitter (she is quite proud of this!) she spits out the medicine. So essentially we have to get her to agree to take it and can’t force it down her throat. (Believe we have all tried to no avail to do the forcible route).

We likely would have been able to go home Thursday except we were really having problems with Lenox’s port and couldn’t get blood level confirmation that she had cleared most of the chemo. The port  was working pretty erratically so sometimes her blood draws came out just  fine, but at other times they couldn’t get even a drop. Tuesday and Wednesday nights were ok, but on Thursday when getting the draw to see if her toxicity was reducing accordingly was so critical, we just couldn’t get any blood. It was a grueling night – I think about as hard as those first few nights of our Induction hospital visit – because they had to try to manipulate her port a bit to see if they could get blood out of it, which upset Lenox majorly, and then even worse they had to replace the port access. This entailed taking out the needle access  to her port, and reinstalling one. When in the office, we do numbing cream about an hour ahead of time but there was no time to wait so they did the “reaccessing” of the port with no numbing cream. Lenox was so upset and in pain – it was horrible to watch. Even after that the port was not working! Ugh! They had put a drug in her line to see if it could help “unclog” it so to speak and the premise of that drug is that it must be pulled back out from the line, not pushed through. So they couldn’t draw blood and they couldn’t try to flush the line. So – horrible of horrible – they said there were going to have to do a separate IV in her arm. As you may recall from prior postings, the IV in the arm was a grueling horrific process for her – scary and painful because her veins tend to roll so even the best “sticks” among the hospital staff were not able to do it in the past. Her only truly horrid memory of that first hospitalization was the treatment room where they did the IV line. I was so upset Thursday night thinking we would have to do it again because I knew this would be really tough for her. By this time, 3 am, even the charge nurse felt there weren’t options left. But – aha! – thanks be to Jen the Charge Nurse Wonder – she thought to call the pharmacy and ask what the risks were if we did just flush the line and that medicine went into her system instead of pushed
out. The time frame for the drugs negative effects if pushed into system were already past, so as a last resort she asked if we wanted to try flushing it through and see if it worked one last time. We said yes and thankfully IT worked! Got the blood they needed and were able to hook her back up to fluids. The tension and anxiety of that evening was so tough on all of us, but whew, it’s behind us now!

Her toxicity got down to the minimal level they needed to see and we came home Friday afternoon. We were all exhausted and went to bed. Before we fell asleep Lenox said she wanted to ride her bike to her  friends house the next morning which sounded great til she threw up first thing upon rising. Now we have her on preventative Zofran (anti-nausea) and are hopefully staying ahead of it. Looks like the residual side effects of that big dosage of chemo will manifest over the next several weeks and then as we undergo the ensuing visits, they will have a cumulative effect on her.

Some good tidbits from the hospital: I got to chat in more depth with someone from the financial office and they helped me understand some daunting billing questions I had; we had a social worker and child life specialist come talk to us about our medicine administration challenges and give some suggestions; and she had her first PT session. Looks like this will be the first of many – they are recommending she have PT twice a week to work on the neuropathy and strength. Lenox also put on many shows for us in the hospital amphitheater and was quite the diva ham! Loved it!

Now at home, her spirits are high and today she did a ballet show for us. She is taking her meds like a champ (mostly) and had a friend over today for a visit.

What’s Next: Today is Day 13 of 133 so we are 10% of the way done already! Pretty good! We go on Tuesday for her next outpatient chemo push and it is of the drug Vincristine, the one that is tough on her and has the neuropathy   side effect, among others. Next hospital visit is in 2 + weeks or so.

The Moms in the Margins: We are hanging in there – whole family on the Slaying initiative above so moms have no independent thought or activity :).

Gratitudes and Shout-Outs:

• Thanks to the Mitchells for the totally perfectly timed package – came the day before we went to the hospital! She loved it and keeps looking at the picture you sent!
• Major thanks to Paul and Ro, Marva, Nidia, Lois and Jen S (LBB) for great meals and gifts – very sustaining. Ro, we love the “butt fork”. !
• Props to Jody, the possibly most omniscient person, who seems to show up with the right things at the right time unasked!  The dino pillow and blanket was so awesome! As were the meals and other treats and toys.
• To St. G’s and Ms. Cindy and Ms. Ashley, thank you so much for the wonderful class project – Lenox has used the sheet fairly consistently to hide under while taking her medicine. She really loves it!
• And thanks so much to Kristie and Diane and family for watching Jonah for us!

After a long bit of waiting this morning, we had an uneventful “surgery” procedure (under anesthesia) of lumbar puncture and spinal chemo and then came up to our room. It took about 8 hours for us to be able to start the 24 hour methotrexate (uber-chemo) IV and just got started around 8 pm or so. So after 8 pm tomorrow night they will check her blood levels and the amount of chemo flushing out of her system. Before we can be discharged those levels have to below a certain benchmark that essentially shows the drug itself has worked out of her system – some kids take just a day or so after the drip ends and others take more days. They also watch for any unusual reactions. She won’t really see the side effects and lower immune system until we are out of the hospital it sounds like.

Like our last visit we set up a “divan” and have a nice comfy nest that Lenox can play or rest on when not in her bed. Lenox is in good spirits: eating, walking around, playing in the play room, and wooing the nurses with her awesome dinosaur lexicon and her Harry Potter Lego collection which of course was part of our menagerie that came along. Thanks all for keeping us in your thoughts. We now have a movie on, all the lights off and have her starlit-sky turtle lighting us up gently. Actually pretty pleasant. Good night and Sweet dreams to all!

Lenox Slays the Leukemiasaurus: As it relates to her day-to-day “slaying” she is doing great – keeping up a great attitude and begrudgingly taking her medicine 4 times a
day. She takes some of it in orange juice which we do as a competition – Lenox and LaLa each have a tiny shot glass of OJ (Lenox’s with meds mixed in) and a tiny  straw. They race to see who can finish it first and the fun of the contest  seems to detract from the lousy taste. The other med we do as a swish and spit in the sink which she likes because what 3 year old doesn’t like to spit! She  is big into Legos now, particularly the Harry Potter Legos and often integrates  dinosaurs into her Harry Potter play. Her creativity is awesome.

General: Today  was a busy/sad/anxious day (for me and Liz) but went off as I would have hoped  for Lenox which was that she had a great day and was oblivious to all of the  tension of the day.

Sad: Today was the first day of school at St. George’s  Episcopal School, Lenox’s school, and it was hard that she didn’t get to go.  She has been talking about school and some of her friends and I think these  last few days of feeling better she would have been okay at school. They had an  annual blessing of the backpacks yesterday and I just didn’t have the heart to go  to that either. When we go back to school finally at the end of the  Consolidation Phase, which will hopefully be after Christmas, we will have to have Father Kevin bless her backpack then!
Busy/Anxious: Tomorrow is our first hospitalization of six –  so we had a lot to do today and I am pretty anxious about it because we don’t really know what to expect. We know what we are going in for – which is a spinal chemo under anesthesia followed by a monitored 24 hour drip of another strong chemo drug, followed by periodic (every 6 hours I think) servings of a third chemo  drug. I am not sure how Lenox will emotionally handle being back in the hospital  so we have talked about it a good bit today but I am most anxious about not  knowing how her little body is going to react to those tough drugs over such a  short time.

We mentioned our hospital visit to Lenox this morning and  she was upset about it but she was most distressed about not having to go to the treatment room (which she calls the ‘laying down’ room) which was where she had such a traumatic time trying to get an IV in her hand/arm last time. We told her she didn’t have to go in there again and she asked me to call the doctor to be sure. So I did a one-sided imaginary call with her doctor confirming that we don’t have to go to that room (we know for a fact that we won’t
have to so were comfortable with this ruse). Her smile was so big afterwards and ever since she has been pretty calm about going – talking about what to take with her, etc.

We go in at 7:30 tomorrow so will keep you all posted over the next week. We hope to be home by Friday. Once we know how this first one goes we hope to have a better sense of what the next 5 hospitalizations will be  like.

The Moms in the  Margins: Since I am prone to “tell all” and not withhold the underbelly of  this, there is something that has made this all even tougher for me. Some of  you may know this, but I have been struggling with clinical depression off and on for years, most markedly since having Lenox. The last six months before us learning of Lenox’s diagnosis I had really been struggling again and more recently had even been reducing my work hours to focus time on my all-around health and work on adjusting my medicines with my doctor to get it under  control. As you can imagine, the diagnosis for Lenox has just exacerbated it  and I am grateful for my doctor who is helping me.  I tell you this mostly to apologize for past and future interpersonal gaffes. I am able to be “on” for Lenox and have her  feel fairly unaffected by it, but I am usually done in by that and end up being  withdrawn and antisocial; so to all those wonderful people who bring us food, who we owe thank you notes to, etc. please forgive my perceived  loofness or lack of conversation.

Gratitudes and Shout-Outs:

• Thanks so very, very much to Kristie and Diane and family for watching Jonah for us this hospital round! It’s such a relief to  have him taken care of. You guys rock!
• Love to Lois from Lenox! Lenox told us yesterday  she wanted to bake a cake for Lois, which we did, and Lois has been hanging out  with us this evening having a great time with Lenox! Thanks for making this   evening a really fun and lively one for Lenox, and smoother for Liz and I. You  are the best!
• Big thanks to Christina for letting Liz beat you  in darts and giving her a nice chill evening and for doing cool arts and crafts with Lenox. Good to see you!
• Thanks so much to Becca and Laura for  coordinating the Care Calendar, which is an ongoing godsend, and to all you wonderful friends who have been bringing us such wonderful meals!

Love to All!

Going into the appointment today I felt like we were going in for an interview – excited, but nervous and somewhat anxious.  We so wanted good news but didn’t want to jinx it by thinking it would really be the case. And…

Wahoo!!!! Lenox is in the Low Risk category for ALL and is in Remission! That is the best news we could have asked for. The risk levels relate to the chance of the cancer recurring after treatment so being low risk means the cure rate is 85%-90% after treatment. So here is a nutshell of what we asked about and what comes next…

What classifies her as Low Risk? She is considered low Risk because her MRD (minimum residual disease test, which measures the amount of leukemia cells still in her blood) on Day 8 for her blood was ZERO and for Day 29 in her bone marrow was less than 0.1%.  That is ideal.

What does remission mean in ALL? Unlike tumor based cancers where remission comes often after a long tough treatment regimen, with blood based cancers, remission is considered achieved as soon as the MRD (noted above) gets below a specific percentage. It is a snapshot in time so to speak and unfortunately does not speak for her likelihood
of the cells coming back if treatment did not continue.

One of our big questions was if her blood no longer has leukemia cells in it, what are you “killing off” with all the intensive six months of chemo? While we wouldn’t have bucked years and years of studies that “x” practice yields 90% cure rate, it still is hard to wrap your head around sending your kid into 6 tough months of treatment and side effects when right now she supposedly has so few leukemia cells in her that she is considered in remission. I feel much better about this after the
doc’s answer – The 0.1% that is still left will re-multiply. The docs are able to look at a level of 1 in 1,000 cells but since we have so many millions of cells in our blood supply that means the likelihood that it is still present must be dealt with. Studies over the last 40 years have shown that getting kids into remission is not the biggest challenge; it is getting them to not have recurrences that is the big battle. Inevitably, the few cells that are still  there multiply and the child relapses. If we
stop now, it could and would likely come back. Those 40 years of study have shown that it is generally the “magic” number of 2 ½  years for girls that are needed to minimize the likelihood of a reoccurrence and long term survivorship.

So what does the treatment plan look like? Still a tough next 5 to 8 months ahead. Tomorrow is an all new Day 1.  Day 1 of this Consolidation phase which will last 133 days (yes, I already put that on a calendar and if it moves along as it should Day 133 would be December 26). That is 19 weeks (so about 4 months) during which Lenox will have:

• 6 planned hospitalizations: they estimate these will be 2-3 day admittances that will include a 24-hour IV of chemo and the spinal chemo as well. The first of these is next Tuesday, the 23^rd so then we will have a better sense of how these experiences will go.
• Weekly clinic visits that will have blood counts and quick IV injections of chemo.
• Lots of daily oral/pill chemo.

Which drugs she has varies from day to day across those days and they gave us a detailed “road map” of all 133 days. Other things may arise that cause this schedule to change or be in the hospital more. It sounds unlikely that we will have all those days move along right as they should and that instead there is movement and fluctuation of when things happen based on her counts – if her ANC or her platelets get below a certain level, then the next chemo may get held off a little. A great relief is that so far, it does not look like her regimen will include radiation which I was pretty worried about. Sounds like
all the side effects will be the toughest part of this period – including, but I am sure not limited to: inability to fight infection, weight gain or loss, acne, insomnia, being tired, nausea, vomiting, mouth sores, sensitivity to sunlight,
hair loss, headaches, nerve problems (which we are already experiencing), weakness, fatigue, brusing, etc. But man I feel SOOOO grateful to be in this Low Risk group where our odds of success are so very good.

After this 19 week “Consolidation phase” as they call it, we will enter Maintenance next year and at that point, Lenox should be able to return to school regularly and get back to dance, swim lessons, etc. and have cyclical rounds of chemo until she is about 2 ½ years from her diagnosis date.

I have to give a huge THANK YOU to Rose Cadena and Grace Drake!!!! They came in from Houston and
today played with Lenox at the doctor office and kept her company for several hours while Liz and I had some good uninterrupted time with the medical team. That would have been such a harder discussion otherwise and knowing she was
well cared for and having fun was such a huge relief. Grace (and Rose of course) is an awesome and brave cousin, friend, babysitter and role model. I hope Lenox is like her when she is 8 years old!

Lenox…  Lenox is now avidly creating her own impromptu limericks and rhymes. For example, this morning we got “I love pancakes in a pan, I want to eat pancakes as much as I can.” Its so fun and comes out of nowhere. We asked the doc if this might not be a new side effect that she could do a medical journal article for.

Lenox also got a major hair cut today at home by yours truly and loves it. It is a little bob below her ears and should make the hair loss a little less dramatic.

More pics to come. Love you All!

Lenox just Getting to be Lenox: the last few days have been a real reprieve from the “slaying” in several ways. Not only was there no chemo, but the steroids are working their way out of Lenox’s system. She still has some bursts of crazy emotions and some big meals but nowhere near like before on either count. She hasn’t lost any weight, but she does seemed to have stopped gaining. Her energy levels are getting better and these few days have been almost “normal”. Liz’s mom (nana), dad (Bam Bam) and sister Terry came in Thursday and Friday which was great. Lenox really enjoyed them here and would make jokes with her Bam Bam. When we asked Lenox who would go with her to the mall she said, “I want my NaNa to go!” and by the end she confided to me that she loved her Aunt Terry (although she was not willing to tell Terry that directly – go figure). The trip was laid-back and good to have them here. Then yesterday, Saturday, as they were heading out Liz’s sister Rose, and her granddaughter Grace (as mentioned previously in posts one of Lenox’s all time favorite people) came. They are still here. Grace has really helped embolden Lenox. They have had lots of good lively play, jumping on the trampoline, playing with Squinkies, making cupcakes, screeching on the roller coaster and even went swimming today! That was Lenox’s first time to the pool since her diagnosis and had a blast. We also had a great visit from the Burns today. Lenox really loves their family and I think was just as excited to see Kate, Kane and Tessa as to see her long-time pal Josie. Lots of roller coaster rides again,cupcake eating, etc.

One of the coolest things recently too is Lenox has been “playing doctor” with Grace and Liz, Rose and I. When we left the hospital they had given me some real medical supplies for her to play with so we had all the gear from a real visit (sans the meds and needles) She either acts as the doctor (and uses her oncologists real name ) or her super nurse Karen, or the patient and she has the others of us fill the other roles. We do everything from putting on the cream, laughing about grunting at the doctor, attaching the “toobie” doing saline, pretend taking blood etc. I think it really helped her to see it acted out in a safe non-stressful setting. I think it also let us talk more indirectly about what she experiences at a visit.

We have lots of great photos but will post those in the next few days- didn’t get them up tonight.

The Leukemiasaurus: We have our big appointment tomorrow where we hear about her risk group, ensuing protocols, etc. They will do blood work first so Lenox has to be there too. So that Liz and I have some good quality time with the doc for that conversation, Grace and Rose made the trip from Houston just to come to the appointment and hang out with Lenox. What a blessing to have them here for that! Expect a post tomorrow afternoon. (I daydream that we will show up and be told that she has surprised them and won’t need any further chemo – like a really long twisted prank got played on us. I know less likely than winning lotto…)

The Moms in the Margins: So, hmmm, was Liz Possibly having a mid-life crisis moment when she mentioned wanting a skateboard to me? I thought it was just a random comment until lo and behold in our amazon cart (yes we keep an ongoing amazon cart, don’t judge) was a skateboard. I moved it to the wish list, bought my few other items and moved on. When I mentioned to Liz that I did not buy it she seemed truly surprised. But even my not so subtle non-purchase didn’t seem to indicate that I was a little unsure. She instead at our next Target trip said “I’ll be back – I want to find knee pads for the skateboard.” I haven’t caved yet but am aghast – my fear that she will hurt herself amidst all we have going on right now will hopefully weigh in on her purchasing decisions. Although perhaps I should jump on it – who know what her next Impulse may be, something more dangerous or expensive – hang gliding, spelunking, polo, snake handling?

As for me, I am playing ostrich and keeping my head in the sand to avoid the daunting task of slogging through our first big batch of medical bills, insurance statements, etc. Ugh! A glutton for details and data at work, I am totally frozen at using those skills for this project. Am realizing how little I knew about the distinctions between co- pays, co-insurance, deductibles, etc. While ever-grateful for insurance, am surprised by what adds up as not covered. So, I will deal with it “tomorrow” …

Love to all! Keep us in your thoughts ad prayers tomorrow!

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Last night, the eve of Day 29, was the last day for the
power steroids! Yeah! Today we went for our Day 29 surgery day – they did a
bone marrow aspiration, spinal chemo and spinal tap. Lenox was good getting
over there at 6 am and despite asking for food, was a trooper about not getting
to eat. It all went off smoothly and we were done a few hours later. She was
actually kind of nice to several of the nurses today. Today here are some pics.
The counts today were good, White blood cell count and ANC up from last week so
still going great in terms of fighting infection, no need for transfusions or
platelets. So we are now on one week of no steroids or chemo. On Monday the 15^th
we will go in for an appt to hear the news from today, hear what our risk group
is, and then get our new schedule, or road map as they call it. Sounds like the
steroids will stay in her system a bit so we will still have some ramp down on
the emotions, etc. but now we are on the downhill path on the eating, etc.
Yeah! Thanks all for taking care of us this week!