Lots of Good News

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!