Wednesday, October 23, 2013

I keep telling her to put her shirt back up.

Esther's port surgery was a piece of cake yesterday.  No nausea, she enjoyed a purple slushy, left the port behind and came home with a scar covered in that clear skin glue stuff.  We're hoping she doesn't peel it off like she did with her broviac.  She is showing everyone that her port is out...I guess sometimes it's okay for a four-year-old to show off her scar.  She's certainly earned the pride for enduring with such grace and courage.

Yesterday was so sweet.  I've got a little cold, so Anthony took her to the hospital.  She was so excited to see her "noirses" and doctor friends.  I woke her up early so she could eat a little before her food and drink restrictions kicked in.  She did that sweet thing babies do when they curl up their legs, arch their back, and stretch their arms so high.  Then she said, "Mommy, I'm going to tell Dr. Amy I'm gonna be like her when I get big."  I commented I thought she was going to be like Miss Rebecca.  She said that she will be like both and take care of kids with cancer.  Sometimes I just marvel in her sweetness.  One of my most consistent prayers through this has been that God would keep her sweet.  Grace upon grace has been poured over this mommy.

Esther ate some cereal, drank some milk, and then got ready to leave.  The kids are thrilled for Esther.  I can forget how concrete they are sometimes.  This port coming out is clear evidence their sister is better.  They've been counting down the days until her it came out,  pointing out the date on our kitchen calendar to anyone who came into our home.

Excited to leave!

Her little hand was waving with such gusto as they drove off!

Zinnia has been particularly affectionate and eager for her sister.  Zinnia is smart and incredibly perceptive.  Over the last couple of weeks we've observed a new freedom in her heart for Esther.   I can't help but wonder if she's been reserved over the last 17 months, protecting herself from the pain her sister, her twin, was experiencing and the fear she might loose her.  During some of Esther's sickest days, Zinnia would throw up for no apparent reason.  I really do think she was just sick with worry and compassion.  Being little children certainly brings a hedge of protection from what is going on around them, but I do believe the hurt, pain, and fear they experience is as real as an adult.  They are graced with an ignorance of childhood, but are not immune from the effects of their experiences.

Thinking about the other four children, Zinnia stands out as the one most effected.  While her brother and sisters have brought her into their play, and special relationships formed that may not have otherwise, she's been a bit alone in it all.  She's played the part of one of the big kids, but you could tell she wasn't quite there.  She still much younger and didn't have the vocabulary or discernment to communicate her experience.  Seeing her this last week has, I think, revealed some of the weight she's been carrying.  She has not wanted to leave Esther's side.  Zinnia is a "daddy's girl."  She LOVES her dad.  All day yesterday she didn't ask once if she would see Daddy when they got home, but told me several times she couldn't wait for Esther to be home so she could hug her.  Heart.  Melted.  They've been cuddling, holding hands wherever they go, playing together in a way that is different and so very sweet.  When they pulled in the driveway, Zinnia did that thing where kids form fists, hike up their shoulders, and runch (run/march) with a facial expression none too different than pop-eye.  She was sprinting to her goal, yet displayed tender self control and hugged Esther gently knowing she'd be sore.

There were many neat things about yesterday.  One of them came through an experience with an accounts manager in the billing department from the lab.  For some reason, the lab does not have our insurance right and there is seemingly no way to correct the error.  We have received a bill for every lab draw Esther has had...inpatient and outpatient.  I am not exaggerating when I say the total is well over a thousand, probably much more.  I have one of those portable file boxes, stuffed, with at least one ream of paper's worth of statements.  The other quirk is that every new lab encounter is a different account number.  There are fewer of those because one encounter generally has a minimum of 4 labs, but the number is still rediculous.  All this has played out in me calling on every. single. bill.  Thankfully the number is dwindling down now!

I've been delaying on the most recent few bills.  When I called the woman who answered recognized Esther's name right away.  She said she'd been worried because there had been so many bills come through and that they've pretty well dropped off.  She said Esther stood out to her because she too has an "old lady name," saying, "it stole my breath a bit when I saw she was just a four-year-old."  I was humbled by the realization that even the accounts managers care for the patients they "meet" along the way and thankful for the chance to tell her that Esther's doing well, in fact, getting her port taken out the same day.  God's kindness to orchestrate this encounter is just...ugh...difficult to express.  I keep singing the line from "Mud Song"..."Isn't it just like you" to bring us to this day.  "Isn't it just like you" to reveal to this stranger that a little girl she'd never met, but knew was so sick, was okay.  Oh...."Isn't it just like you?!"  God is completely in the details, coincidence is nice to bring up, but I just don't buy it.  Over and over in our lives it is clear God is orchestrating "all things for the GOOD of those who love Him."

Esther's little celebration with Dr. Amy, Miss Kerri, and her
beloved Mr. Ricardo.

Waiting.  Waiting. Waiting.  Sweet girl.

Waking up from anesthesia  Minnie keeping her company
under the covers!

Friday, October 18, 2013

Just one more big step

I love fall. LOVE fall. There was a frost Tuesday night that made for an enchanted Wednesday morning. As I was driving to our homeschool program each tree I passed brought wonder, and I felt like a little girl. From each tree, golden colored leaves fluttered down, catching the light like glitter. Maybe a bit of fairy dust, as Francesca would say. My friend commented it was like it was snowing, but only under the trees. If I didn't have to prepare for a morning instructing seven young boys, I would've kept going to Mountain Avenue and walked right down the middle.

Being a task oriented "A-type" personality, cancer has caused me to just pause and notice the beauty around. Not just notice, but really breathe it all in. In my perfectionism and to do lists, I've often observed "free spirits" to posses a lot more joy than I do. I kind of wonder if it's because they aren't afraid to twirl under the falling leaves outside all the fancy houses on Mountain Avenue.

We are all plugging along. Anthony is working with CDOT to help with the rebuilding of the roads destroyed by the flooding Colorado experienced last month. This means a new desk at the "incident command center" in Loveland and a work schedule that includes Friday, Saturday, Sunday and Monday. Since he works at the "incident command center" I might start calling him Jack Bauer. He will be mostly off Tuesday-Thursday, but will need to check in at his office weekly on one of those days. It's just for a few months and is a neat opportunity to be part of the flood restoration process across Northern Colorado. I'm excited to take our kids to Estes Park and be able to point out...your Daddy helped rebuild these roads.

With this schedule, it feels a bit like figuring out new "normal" is taking a back seat, and God is helping me to lay that agenda down and just go kick the leaves. Life is still a daily choice. For me, each morning is a deliberate, and sometimes not so easy, choice to get up and do the day. I don't know how long this weariness will last and it's getting better, but my mind is still so scattered and foggy. I feel very irresponsible and flakey and can only handle a small disruption to the day without being completely overwhelmed. Outside of doing school and feeding my family, I really struggle to emotionally handle even an errand or walk around the neighborhood. I appreciate the patience of my sweet friends in this. Many have reached out and I've struggled to return phone calls or emails. This is not natural to this extrovert who once thrived a midst an overflowing plate. I think it's getting better, but takes a lot of energy to continue to engage.

Next Tuesday, October 22, will hold one big last step for Esther. Her port is coming out! It is a short, simple surgery, but one with great importance. She will have officially completed her treatment of stage 4, high risk, neuroblastoma. It's a big deal.

Her leg is healing and she's up and about walking pretty well. She has a follow up appointment with the orthopedic surgeon next week, and we should know more about when her plate will come out then.

We know you'll be praying for her surgery and continued healing, that her cancer will never return. Would you also please pray for a few kiddos we've met along the way? Justin is facing neuroblastoma for the 7th time and he's having a hard time with his current treatment. He is so brave. Boden is getting close to the end of his treatment for a brain tumor and there are many things that are it gone, what does life look like for them now? Coming off of an intense year of treatment is a shock to the system and the time to breathe and reflect can be difficult. Isaiah is a friend from Brent's Place and he is recovering from a second bone marrow transplant to treat relapsed AML (leukemia). His immune system is quite weak and he's struggling to fight a couple of viruses. Pray for his family, and his mom, Amber. Her weariness is so heavy, and my heart aches for her. And one more kiddo, Izaac. He is fighting a relapsed brain tumor.

Tuesday, October 8, 2013