Hospital Visit 2 Done!

18 Sep

“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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