so much llama drama

this girl. she can go from being 100% to less than 10% in the drop of a hat. she can spike a 102 fever, and then (after you've hemmed and hawed about it forever), she'll start to drop on her own before you've even poured the tylenol. she will be so puny she can't even stand on her own two feet, then rise to run and jump and dance with no apparent reason for the rally.

this makes it hard - so hard - to know what to brush off and what to bring to a doctor's attention. with eli and maddux, i was less than alarmed when they had the occasional fever or cough...almost every illness before ruby came along was treated with some extra steam in the shower and a nap. but ruby has had more medical challenges than we've known what to do with. the biggest (leukemia, of course) is the one that has made me run to the doctor way more often than i would like. mainly because i just don't know from one illness to the next which ones are 'real'. sometimes she seems so sick and we go in only to be told it's just a virus that needs rest and hydration. then she'll be seemingly fine and spike a random fever at school only for us to find out that she's got strep or bronchitis.

the last few weeks have found ruby a little congested, but all of us have been feeling the effects of allergies and/or poor air quality. so no reason for alarm. until this morning when she wouldn't rouse from her bed. she was awake, but lethargic at best. but even after a breathing treatment and a popsicle (tried to get her to eat ANYthing), she hadn't improved.

so ruby and i were off to the pediatrician when they opened. we were there for four hours. they didn't like her oxygen levels, so gave her another breathing treatment, which actually tanked her oxygen levels, so they wheeled the big O2 tank in. she had another treatment (or maybe saline and a treatment?) with the O2 - she slept through that because her pulse-ox was so low. then some prednisone and more saline (all the while with O2 on her because as soon as they took it off her levels tanked again).

finally, they resigned to sending us to the ER because ruby's levels could not stabilize without being hooked up to oxygen. so much so that they called for medical transport because they didn't even want her off of O2 for the 30 minute drive it would take for me to get her there myself. (all during this four hours, ruby saw every nurse and tech in the pediatrician's office, because they have all seen her so much in the last six years, and they all wanted to check on her. love them.) sidenote: ruby will tell you she rode in the ambulance 'by self'. they gave me the choice of following in my car or riding with them, but if i rode with them i'd have to be up front (not with ruby). so i opted to drive my car because i wasn't sure how we would get home from the hospital at the end without it anyway!

once at Children's, they hooked her up to oxygen and another breathing treatment and ordered a chest x-ray. the doctor was cautiously optimistic that we'd not have to stay the night, but it all hinged on those films. we stayed on breathing treatments and oxygen for what felt like forever and tried to pass the time with tv and books. once they took us for the x-ray, they decided to test ruby's oxygen levels without being hooked up. she said as long as we could keep it above 94, she'd be happy. so they left and ruby and i played the game that if she could cough for me or do deep breaths, i would give her a few goldfish. it was amazing how well she would do with that, and she kept her numbers closer to 98 the whole time. this went on for another long time, ending with the doctor returning to inform us we could go home with another (new) inhaler and some antibiotics to help clear up whatever was trying to brew in her lungs.

back to the whole 'i just can't tell' storyline. after dinner, ruby was dancing with her sister, packing a bag for a sleepover (she does this every day) and acting every bit her regular self. all less than 8 hours after she was hooked up to oxygen and sent off in an ambulance.

she keeps me on my toes, this one!

Clowning Around

I had the unusual opportunity to photograph some clowns last week. While Ruby was in the hospital last year, we were entertained several times by Atlanta Clown Care.

 Ruby absolutely loved the clowns, and I loved taking pictures of their interactions.

The organization used some of my photos on their page, so they had my contact info. About a month ago they called me to request more 'official' photos. The Atlanta branch is starting a new venture (same 'service', different name) and can't use any of their old promotion stuff.

When the clowns visit kids in the hospital, they entertain and leave them with what I would call trading cards. They are small cards that contain a photo and the clowns name and a few 'fun facts'. All of that must be redone for for this new company, so they were in need of a photographer.

I was happy to oblige; the service they provide hospitals and patients is one that is very valuable in my eyes. Once we confirmed the date and time, my clown contact begged me to bring Ruby along. And when I told her that I never bring my kids because they would likely distract me, she assured me that with about ten clowns around, Ruby would be plenty distracted herself and it would not be a problem.

So my sidekick and I packed up for the afternoon and drove south. Ruby was smitten with all of the make up, the clothes, the music, the heart and soul. She kept throwing one of the juggling balls with one clown, then sitting and listening to another play guitar, then laughing at the antics of yet another.

As we were finishing, they asked for Ruby to be in a few photos as well. She hopped in and acted like a total pro: seriously, I didn't have to place her or guide her or anything... First photo shoot with Ruby was a total success!

In The Clear

Another monthly check-up for Ruby at the AFLAC Cancer Center, and another clean bill of health. This one was a milestone visit as it marks 6-months, and with it comes two great changes for Ruby. No more meds on the weekends! (She doesn't mind taking them anymore, but anything we can do to distance ourselves from cancer is welcomed!) Also, we no longer have to go in every month; now we are on an every other month cycle.

Hooray for continued health!

Radio Head(s)

We were contacted several months back about speaking on the radio during a fundraiser for the Aflac Cancer Center (where Ruby stayed during her chemotherapy and where we visit monthly for appointments now). As scary as that sounded, I passed up an opportunity to do that during one of our longer stays at the hospital, and I regretted it, so I told the Care-A-Thon team "yes".

I put the date on the calendar, but didn't give it much thought because it was so far away. Then the team contacted us a few times in the last week to firm up details and verify our attendance. Last night I thought through some of the potential things that would come up in our conversation (we did not have a list of questions or topics to be prepared for), and I tried to prepare for how I would respond.

Before we even walked into the building we ran into a friend. Her son and Ruby play at Gigi's and we have been so blessed to get to know them in the last three years. That helped calm me a little, but then when we checked in, we found out that we would be slightly delayed from our original time. Enter nerves again!  So Ruby kept herself busy in the infusion clinic...a place that I honestly loathed visiting during our treatment. A much easier/more pleasant visit today!

After about 30 minutes of play, they came and got us. As you might imagine, I didn't say half of what I prepared. The 'interview' went so fast and I wasn't able to process when he ('he' being Herman Cain) would ask something else or break in, so what ended up on-air was not any of the planned stuff. Such is life!

Here is the interview.

And here's what I planned to say:
When asked about the moment of Ruby's diagnosis, I planned to say that it wasn't hard. Ruby's diagnosis at birth was hard, because of our ignorance to T21. God used that initial diagnosis to make everything else that we've faced since then 'no big deal'. We had some tears, but God used Ruby's cancer to show us just how strong and capable this girl is, because her first diagnosis found us fearing she would not be either strong or capable. Cancer is shocking, but it's all relative, and we were blessed to not be blindsided by it because we already knew that kids with Down syndrome are more likely to get leukemia than other kids. That being said, we are so blessed that our pediatrician insisted on routine blood tests because even after Ruby was diagnosed, she wasn't symptomatic, so without that test, she could have gotten much sicker before we started treating her.

When asked about how our time at Aflac was, I planned to say that it was surprisingly ok. When you think about living in a hospital, it can be scary, but the reality was pretty 'normal'. You get into a routine and start thinking about your room as your living quarters and you just make the best of it. Ruby and I would have several things we'd do each day to keep us busy. After we had breakfast and did speech exercises, we'd walk the floor (or if we weren't hooked up, the hospital). We'd visit the garden or the playground and then come back for rounds. Then we'd repeat that cycle a few times during the day. The lunches delivered by Cure for the families on the AFLAC unit each week were a welcomed change from whatever combination of hospital food and snack bars I had. And the several times a week opportunities to dance and sing with the guys at Songs For Kids were therapy for me as much as for Ruby. Atlanta Clown Care made Ruby smile every time she saw them. And that's not even mentioning the volunteer readers and therapy dogs and the countless nurses and other CHOA and AFLAC staff that we encountered each day that helped us keep a smile on our faces.

When asked about how our family dealt with Ruby's cancer, I planned to say that it was hard. It was hard living in the hospital for most of 7 months. It was hard to miss Eli's last year in elementary school. It was hard to miss soccer games and field trips and other 'big kid' things that Maddux and Eli were involved in. And it was hard to live apart for our family. Ruby's first month included several visits at the hospital, but after that, we were in flu season, so the kids couldn't come to the hospital.

But we were so fortunate that this happened in the age of technology where the kids could see Ruby on Facetime each night, and Lehr and I could see each other over breakfast each morning. And we were incredibly grateful for the friends that took care of our older kids while I was living at AFLAC with Ruby. So many people stepped up in so many amazing ways...we couldn't have done it without them. And the big kids got to attend Camp Sunshine for a sibling camp, and they got to spend more one-on-one time with each Lehr and I as we traded off, so there were silver linings everywhere for them too.

When asked how Ruby is now, I planned to say that she is stronger than ever. God used Ruby's cancer and our time at the hospital to pull us closer to Him and remind us that He has us. Ruby has completed her treatment and is back to being a toddler who runs and yells and gets into everything.

So I didn't say half of that, but Ruby charmed the room, and she babbled on-air, and Lehr and I hopefully got to pass along a success story related to a place that doesn't always get to celebrate those.

Bittersweet

Romans 5:1-5  Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. ³ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

I have a feeling that 'bittersweet' is going to be the true north emotion for many milestones to come.

Today marks three weeks. Three whole weeks since the last time Ruby was in a hospital bed. (That is lifetimes longer than any other home stay we've had since last summer.) Three whole weeks since Ruby had her central line taken out, adding a much needed step in the direction of what her life was before leukemia. Three whole weeks that have included preschool and baths and public play spaces and almost nothing medical.

But this amazing three weeks is also a harsh reminder of the difference between Ruby and so many other kids with cancer. Our time at home has included the passing of one child that was on the cancer unit with us. These three weeks have found another little boy who shared the AFLAC nurses and doctors with us on a few occasions back in the hospital again at least twice, this most recent time with infections that are giving him a fight bigger than his body seems able to handle.

So there is the bittersweet part: the part that makes it difficult to celebrate Ruby's remission. I've never met a parent going through an illness that doesn't rejoice in the health of others, that doesn't cheer on healing. But I have to think it's hard to see someone else's child get through treatments without much pause, only to move on with life when yours is still in the throws of the hardest moments you could ever have imagined. I can't even wrap my brain around what it feels like to make decisions no parent should ever have to make. It absolutely breaks me to think about the conversations that must be had. Between spouses, with the sick child, with other children... Anything we've faced pales in comparison to that type of suffering.

So I go back to these verses. 'Glory in our sufferings because we know that suffering produces perseverance, character, and hope'. I do not think God chose for Ruby to get leukemia or Grant to get neuroblastoma. No more than I think He chose for Ruby to be healed as anticipated and Grant to still be fighting. So I can only rest in this truth: God is with them both. He will use any suffering to shape the character of those involved; He will use the suffering to foster a home for hope.

And He will heal both Ruby and Grant; whether on this earth or in heaven remains to be seen.

I have to believe that because it feels crazy to celebrate three weeks of 'nothing' when that three weeks held so many life changing moments for so many others.

Central Line OUT!

I took Ruby in for a small outpatient surgery yesterday morning. (I say small because after the little bit of medical stuff we've been exposed to in the last seven months, this surgery could definitely be classified as small.)

We arrived at 8 for a 10AM slot. Ruby was in good spirits, but around 9AM she started signing and asking me for "more" and "eat". Distractions were my friend until about 9:50 when they came and gave her Versed to make her a little drowsy, and a quick breathing treatment to get her lungs nice and clear before she went under. I put her in the bed to be wheeled back just after 10, and away she went. Maybe 15 minutes later the doctor came out to tell me it was done and went as planned. Thirty minutes later she came wheeling down the hall.

Now most people would be a little groggy after waking up from anesthesia. Ruby's been under close to a dozen times and, while she always comes out easy, she usually takes a few minutes to wake back up and shake the cobwebs out. Not this time. She sat up in her bed as soon as they started and waved to everyone they passed. By the time she got to me she was even smiling and lunged right for me. No 'waking up' needed.

That girl.

Stitches were not needed; Ruby just has a bandage over the site which we can take off tomorrow morning. The spot will scab up and that is it. No more central line.

It's a crazy bittersweet thing. As absolutely ecstatic that we are that her 'tubes' (as we called them) are gone, I can't really hate them. As stressful as it was to keep wrapped up behind her so she didn't mess with them, as tedious as it was to always remember which days to flush, when the last time we changed caps, how long it had been since we changed the dressing, that line brought life saving medicine to her. It was hard to watch the nurses suit up in Haz-Mat gear to administer the toxins into her bag, it was surreal to have to glove up whenever we changed her diaper and throw them away in a yellow "POISON" bag, but it's what cleaned her body of the cancer.

But now we will move onto life without the 'tubes'. A life that includes things like baths, water tables, and swimming. A life that allows me to no longer have Ruby wear one-piece clothing every second she is not in my presence, whether that is while she naps or sleeps or while she's at school or church. A kind of 'carefree' life, if you well.

The Kindness of Strangers

Especially when their kindness makes them not strangers. When it makes them some sort of extended family that you may not see regularly.

I've gone on and on about the outpouring of love and help for our family, but the 'random' encounters with people we don't know is also oh-so cool. When you put your life out there on the internet, especially when you have kids and you involve them, it can be scary. In the past ten years I've had many sleepless nights wondering if I've done them a disservice, if I should pull everything about them off of the blog and my photo site and FB... Most days I would willingly share to reach our friends and family who are not close by, or to parents of kids with clubfeet. In the past two years I've shared even more, even more often, to connect with other parents of kids like Ruby, whether with Down syndrome or Leukemia. That opens us up to a lot. But the main thing (it IS the main thing) it opens us up to is kindness. Kindness because people can relate and they appreciate our posts. Or kindness because Ruby has shown them a side of something they had no prior knowledge of. Or kindness just because. We were blessed to have so many examples of this just in a week's span.

When Ruby finished her surgery today, her friend, Morris (the 'hospital tag guy'), and Amy, a woman Ruby and I met early on in our stays, came to visit Ruby. They brought balloons and a stuffed animal. They stayed and talked and entertained Ruby for about 15 minutes. Without FB, Amy wouldn't really know who Ruby was, having only seen her around the hospital a few times. But she tracked down Team Ruby's site and followed her and came to see us during some of our stays and brought Ruby (and her siblings) homemade hats. That is kindness....crazy kindness.

When Ruby and I got on the elevator to leave, the woman standing in it heard me say "Ruby" and said, "Oh my gosh...is this Ruby?! We all follow her online and love her!" I had never seen this woman before in my life. This is not a rare occurrence for us. When Lehr was walking her across to the clinic to meet me yesterday after our Aflac visit, he was stopped by several women in the lobby who knew Ruby and wanted to say hi. Lehr did not know them. That is kindness.

Last Sunday we attended a fundraiser for Songs for Kids. We were stopped by several people who wanted to talk to Ruby. They had heard through the grapevine about her. Maybe through one of the SFK musicians, or maybe through a friend. But they stopped and said hi and smiled. That is kindness.

On Sunday, we will hang out with people who are shaving their heads or supporting those who will, all in an effort to raise money for childhood cancer research. The first boy to ask to shave his head for Ruby has never met her. He found out about her through a teacher who happens to be a friend of ours. She showed him videos and pictures of Ruby from FB. This boy was hooked and pledged to shave his head for the first time in honor of Ruby. That. Is. Kindness.

I have to believe more good than bad is coming out of our *public* life. Because when someone stops you and makes a big deal out of your daughter, it offers a moment of sunshine in what may have been an otherwise tough day full of doctors' appointments, or procedures, or reminders of her delays, or what feels like parenting 'fails'.

Big Week

Grandpa Jim came to our house for a few days on his way to visit some friends. Ruby never missed a beat, calling him "Um-pa" and looking for him 100% of the time. She made it pretty impossible for him to resist her; he didn't do much other than sit on the floor with her, play with her, watch her eat, attend to her every request....good times.

On Tuesday, Ruby went to school and I went to the second 'transition' meeting for her. When she turns three, she will age out of Babies Can't Wait (the state service through which she receives some of her therapies). This transition moves her to a local public elementary school where she will receive preschool or therapies, or both. The meeting went VERY well. While nothing at all was decided in this meeting, the information I walked away with made me feel very hopeful about what is to come in the next few years for Ruby. The next step is an evaluation by a few therapists, followed by the IEP meeting. If you're a parent that's dealt with IEP's, you likely just cringed. I am hoping our first one goes well, and I am preparing as best I can to ensure Ruby receives what she needs in the next few years to set her up for 100% inclusion for Kindergarten.

Finally, today was spent at the clinic and hospital. Ruby had several pre-op appointments: cardiology for an echo cardiogram (her heart looks good), the Aflac clinic for a physical exam by her doctors and blood drawn (her ANC is 3750...higher than it's ever been since we've been testing it!!), pre-anesthesia on the surgery floor to check her out and to fill out all paperwork for her procedure tomorrow, and finally to the clinic to receive her final infusion through her central line (a medication she takes monthly to help protect her from infections).

In between all of that 'fun', we went to the Aflac Unit (where Ruby spent oh-so many days and nights in the last seven months) to deliver a basket of goodies to the nurses, techs, nurse practitioners, staff. We also had cards for about a dozen nurses that we really connected with during our time there; Ruby threw in a red stethoscope ID tag with her Team Ruby logo on it too.

Tomorrow is surgery day: Ruby will get her central line taken out! From here on out, she will only have to visit the clinic once/month to have blood drawn to check numbers. During this time she will take medication a few times a week to ward off infections while her bone marrow works out all of the kinks that come along with returning to 'normal' after chemotherapy. Eventually those visits will spread out and she'll only get checked once/year. We are super excited for the surgery to be completed, super excited to take a bath (she hasn't had one since August), super excited to become a survivor of childhood cancer.

The Rest

This is not to say that the gifts that I haven't blogged about individually are not 'special gifts'....there are just too many to count. The kindness and generosity shown to our family during the last seven months blows me away every time I think about it. So while these each don't get their own post, please know that it was all of 'the rest' that made the biggest impact for us. It's how we got through.

I think I've listed the many things done for us before, but here we go again:

• before we started the first stay, a few neighbors cleaned our house and did all of our laundry
• a meal calendar was set up and we received meals each week while we had long hospital stays (the meals were awesome, but someone else managing the set up was HUGE)
• we were asked to keep a cooler on our front porch and in it we received 'random' drops of fruit or other foods
• cards, cards, cards
• gift cards for dinner places
• bowling GC's for when Ruby is better
• offers to take the big kids out for a movie, or overnight
• emails, emails, emails
• childcare for my big kids after school on days I was at the hospital (again, a friend did this for me for the first stay, and the set up of this by someone else was amazing!)
• meals brought to me in the hospital
• muffins/snacks dropped off at the hospital for me (food for the hospital was HUGE!)
• texts, texts, texts
• GC's for fro-yo for the big kids
• good friends that picked up my kids when they got sick at school and I was in the hospital
• new pjs for me and ruby for the hospital
• prayers, prayers, prayers
• 'random' gifts in the mailbox or front porch for Ruby or the big kids
• a basket with small distractions for the hospital (yarn for my knitting, new books for Ruby, etc.)

Please know that this is not intended to be braggadocios. While we do have the best friends, neighbors and community ever, my intention with this post is to help others who want to help others. I cringe at the amount of times I can remember a neighbor going through a rough time and I found the excuse of young kids or no free time getting in the way of my helping them. This journey with Ruby has opened my eyes to all of the ways that people can help, and how much an impact even the *little* things can have.

I've read before that "How can I help?" is not a great question for someone in a position like we just went through and now I get it...it's hard to ask for help sometimes. There are some things that you can just do without asking, and others that you can do with minimal asks (ex. "I'm bringing you dinner...would you like it fresh to eat tonight, or something you can freeze for later?")

The Gift of Hospital Stays

 Joshua 24:15 "...as for me and my household, we will serve the Lord.”

At the end of each calendar year, I put all of my blog posts into a book to keep. It's my way of keeping 'baby books' of my kids. I just finished 2015, which means I had to go through all of the blogs again to do spell checks and formatting and whatnot. I noticed a significant increase in my blogs in the fall. And the blogs were more insightful to what I was feeling about the kids (mostly Ruby). I also noticed that the blogs all but stopped when she was home from the hospital.

It doesn't take a genius to make the connection: I obviously took more time to intentionally pray for my kids, love on my kids, be present with my kids, while we were going through the harder times. I took more time to plan small fun things with them. I spent more time in the Word each night. I spent more time reflecting on how great my family is. While Ruby was in the hospital, whether I was home or with her, I prayed constantly for us to be together again. I prayed daily in gratitude for our family. I prayed on verses I'd never read before.

What a gift.

That doesn't mean those times were perfect and the stuff Hallmark cards are made of. The kids still argued, I still lost my temper, moments were still wasted. But most of the time I felt like i was gaining on things. Even when things weren't great with the big kids, we were working through them instead of just moving past them.

It would be easy to say that I had more time to spend in prayer and in thought, but actually I didn't. The only down time I had while in the hospital was after Ruby went to bed at night, and sometimes that was late due to meds or nurse visits. And when I was home on the weekends, the kids and I were running all over the place. I think instead I just made more time. Time that I don't often make in everyday life.

So what does that mean? For me it seems to be the age old story of not appreciating things until they're gone. When my time with the kids was limited, I craved it. When our family time was non-existent, we did more things together when we finally were together again. When Ruby was hooked up to those lines, I capitalized on ever second she was unhooked.

I've decided to try and really learn from this (not just return to 'business as usual'). Here's my goal going forward: to spend each day as if we just left or are about to go into the hospital. My fear is that I'll fall back into the space where days pass by without me being intentional. Without me being grateful. Without me being present. Without me spending time with God.

So while this blog is about the kids, I will definitely continue to use it in a cathartic way to work through what God places before me.

Last Day

Psalm 71: 23  My lips will shout for joy when I sing praises to You; And my soul, which You have redeemed.

Ruby is OUT! She finished her last 24-hour bag of chemo this afternoon, getting her discharged from her LAST round of chemo! While it's only been six rounds (just over six months), they have been intense rounds requiring a lot of inpatient time. Praise God...no more chemo!

Ruby's rounds always start with chemo and end when her counts recover though, so this is the beginning of the last round for her. We got to go home tonight, but now we wait for her counts to drop (and possibly need blood or platelet transfusion(s), and/or antibiotics for a fever while she's neutropenic). All of that before her white blood cells and red blood cells and platelets recover to a level that puts her back in a healthy place; this whole process typically takes a month.

Once Ruby's counts do come back up, we will go back for a check-up and full CBC. A green light there means the removal of her central line will be scheduled. That is a *simple* outpatient surgery, after which she heals and can then take baths and go swimming. Can I get an "Amen"?!?!

Back to Ruby's last day. Before lunch, I packed all of our stuff up and ran 90% down to the car while a nurse occupied Ruby. (I didn't have to twist any arms.) Ruby took her afternoon nap while the chemo finished, and we prepared for discharge. Ruby's nurse mentioned that there was a ceremonial bell in the lounge that Ruby could ring, signifying the end of her treatment...would we be interested in doing that? Of course! So she went to get the final paperwork for us to leave and returned with most of the nurses on the unit at that time. They were all clapping and cheering; Ruby joined in, but kept looking at me as if to ask, 'why are we clapping?'. They had a sign that had been hanging in the hall all day with notes to Ruby. We all walked down the hall to the lounge together so Ruby could ring the bell. My camera was already in the car, but I still had my phone to take a quick video and picture. She rang a few times, smiling after each 'ding'. Once we were done with that, we walked down the hall to leave, the nurses clapping behind us. Ruby was so hyped up and determined in her walk; it was almost like she got it. I stopped her after a few yards and asked her if she was going to hug anyone. She grinned HUGE and turned around to return to the nurses. She gave them each a huge hug and then we left.

It is very likely we will have a few more nights in Hotel Aflac (for a fever while her numbers are bottomed out), but every thing along the way deserves a celebration!

The Badge

If you know Ruby, you know she makes friends everywhere she goes. She walks through Publix, school, the hospital, LIFE, waving to people and saying either "hi" or "bye-bye". She stops at every open door, she tries to meet people's eyes, she smiles with her whole face: she just sucks you in.

Since we've been living part-time (half-time?) at the hospital for the last six months, Ruby has made a lot of friends here: doctors, techs, nurses, security, administration....she doesn't discriminate. But someone sure to always get more than a wave from Ruby is Morris.

When Ruby first started living at CHOA, we would cover as much of the hospital as we could each day...anything to not be stuck in the room if she wasn't hooked up. We would see Morris in the halls here and there and he would always engage Ruby, usually with a duck sound. Hook, line, and sinker. (Ruby is a sucker for realistic animal noises.) That turned into the two of them quacking at each other in the halls or on the Aflac Unit daily, if not more often. This last round, they had the nurses' station laughing out loud at their antics over the weekend, and Ruby started dancing her feet like Morris too.

So to switch gears, Ruby also loves the badges everyone wears. When a nurse or doctor comes in and checks Ruby, she always, ALWAYS, grabs for their badge, phone, and stethoscope (usually in that order). Some of the nurses and I joke that she likes to check every one's credentials before she lets them examine her. And just this week as Ruby and I were making our rounds on the unit (which includes slipping out the back door and utilizing the loooong hallway separating Aflac from the rest of the hospital), Ruby showed me that she knows the badges have power. We approached the door to re-enter Aflac and she moved close to the wall and lifted the front of her shirt towards the scanner. (The door can be automatically opened with a badge; otherwise you have to push it open, which we have to do.)

Back to Morris: one of our favorite nurses mentioned to him that he needed to make Ruby a badge because she checks every one's. Add that little story about her and the door and voila - tonight he presented her with her very own badge.

Oh how I wish I could have videoed the ten minutes after she received it. (Unfortunately Ruby is hooked up to chemo and it is all I can do when we are in the halls to keep pushing the chemo pole at the speed at which she takes the corners...no chance I could hold a camera during that.) This girl was SO excited. She kept looking at it and saying "OO-BEEE" (Ruby). In fact, she stumbled a few times because she was not watching at all where she was going and kept staring at the badge. Then she started running through the halls, yelling to everyone she saw, "OO-BEEE!", as she held out her badge or pointed to it. And when we passed something on the wall that resembled a scanner? You better believe this girl paused and told the scanner "OO-BEEE" as she tried to scan her badge.

Seriously, such a fun night...this girl wore herself out with that badge, up and down the halls. These are the details that make this journey memorable in a good way.

Plans

When I get mad, thinking about this fall (and winter!) and all of the moments that leukemia stole from us, I have to remind myself that leukemia also gave us a lot of moments. It's far too easy to overlook those gems in the face of all of the memories you planned to have. But the forced pause, the non-negotiable shift of focus opens the door for things that can't be planned. Things that wouldn't be noticed or experienced were it not for the new set of eyes gifted to you by something like leukemia.

Ruby
This fall was to give her a 'breakout role'. She was supposed to go to school two time each week and, pardon me, kick @$$. She just was. And I was going to enroll her in swimming and gymnastics to work on PT things. I had it all planned out...

Instead, we got to see the amazing heart of a school that had only just met us. We got to receive love from them in ways we never could have expected, and Ruby still did flourish this year, even though she was only there 1/4 of the time, at best.

Instead, Ruby and I got to spend a lot, a LOT of time, one-on-one. That is true for most of our days, but this was hospital time, without me being distracted by piles of laundry or making dinner or photo edits or the other kids. That made my girl and me able to communicate without words even more than we were able to before.

Instead, Ruby got more speech therapy with Mommy than she could have ever hoped for. Being hooked up to chemo or fluids or both makes many PT things hard to do, and my skills in OT are limited. So I started up yet another speech program with her while we were hanging out at the hospital, and a friend made us more flash cards, and every day afforded us at least two (if not more!) dedicated 30-60 minute windows to work on speech.

Maddux
This was going to be the fall that I slowed down and focused on Maddie to see what she's passionate about. I was (am!) determined to find something that she really wants to do and help her in that area. This was going to require some good one-on-one, and it was going to require me to stop being 'mom' and just listen to my girl.

Instead she didn't do any team sports or music this fall. Instead she did *just* a laid-back art class after school one day a week. Instead she continued to flourish in the area of making things for people that she loves. Instead I got to see her heart shine through in every project she creates. Instead, I got to find more notes and drawings left for me every time I came home, whether it was from the hospital or from the store.

Instead I jumped at every chance I could to read to Maddux before bed when I was home from the hospital. Instead of defaulting to Lehr for that, since he typically gets less time with them, I started book after book with her, trying to soak up precious minutes of just Maddux and I together. (But I still never found that one thing for her.)

Eli
Oh, the fifth grade year. Many potential moments for this fall. I planned to grab this boy once every two or three weeks before school and grab breakfast, just the two of us. I planned to become more involved in the older kid group at church (to be with him). I planned to spend the fall completely immersed in all things Middle School to not only figure out where to send him, but how to properly prepare all of us for that.

Instead I got many before bed chats with Eli. Just as I did with Maddux, I stole moments with Eli, reading new books together and doing some devotionals. We even read through another one of those books that helps you talk about that, one that went beyond the preliminary stuff. One that is probably more on par, unfortunately, with what he's about to be exposed to through his peers, if he hasn't been already.

Instead, Eli is involved in an amazing 5th grade group at church where he's without any of his family. It's a place he gets to go for an hour on Sunday and hang out with a few cool adults and other kids his age, about to make the same jump into tween-hood.

Instead, I had to 'let go and let God' with so much of the Middle School decision. Our focus had to be narrowed and we had to sharpen our senses to take in more in smaller chunks, as that's all time afforded us. Instead, I had to sit back and notice the maturity that I'm seeing emerge from Eli.

So thankful that my plans don't usually line up with His plans!

Updates

Rounds are done, Ruby and I are walking the halls again. She still prefers to push the pole rather than just catch a ride, but now she has a new trick: she pushes at full speed and then does a hop-hop with her feet to jump on and catch a ride. Someone get this girl a skateboard...

Ruby's tolerating the chemo (same exact protocol as Round 5) as well as she ever has: no nausea, no dips in energy, nothing but the picture of health. The doctors expect that her counts may take a little longer to come up this time, as later rounds have the cumulative effect issue, but they expected a lot of things (negative) from Ruby so far that haven't come to fruition, so we'll see.

Once her counts recover (end of Feb/start of March), they will schedule a port removal. We wait until then because she will likely need blood products and/or antibiotics through the port during count recover, so they like to leave it in until that is finished. After that, she will have a CBC (the blood test that triggered her diagnosis) once a month for several months before they gradually move to once every two months, six months, and then annually.

More Musings

Almost there....it's always the last mile that's the longest. The last month of pregnancy, the last hour of the drive, the last lap of the race.

The last round of chemo.

The chemo itself is only the start of the round...it's always been that way. The full 'round' includes what happens after the chemo: the count recovery, potential fevers, low counts, transfusions, etc. So that means we still have the remainder of February - maybe with an adder in March, in front of us. Not much in the grand scheme of things (we've been at this since August), but still, it's getting through this chemo stay that seems to be taking a while. We've got 3 days/2 nights done...only 5 days/5 nights left.

As always, I have to comment on how *easy* it all is for Ruby. We have no choice but to focus on the hard parts of being a family divided and days spent tearing our hair out trying to keep Ruby from coming separated from her chemo pole. So many parents would love to have the 'stress' of their child having the energy - too much energy - to run full speed away from something they are tethered to... But we quickly adapt to what we are in, and we get used to new normals (even as abnormal as they are), and we find room to complain about it all.

So, until next week, we are spending our days trying to float through the cacophony of the Aflac unit (monitor beeps, nurses in and out of every door 24/7, volunteers making their way through the halls with gifts and books and dogs, the medical team doing rounds, staff emptying trash and changing sheets and trading out sharps containers, and and and....) Trying to find the symphony in it rather than the racket. Good thing Ruby is leading the way because she sees nothing but joy, even in cancer.

Like A Switch

Psalm 150:1-2   Praise the Lord. Praise God in His sanctuary; praise Him in His mighty heavens. Praise Him for His acts of power; praise Him for His surpassing greatness.

Today I felt as close to 180-degrees from yesterday as I can, considering we are still in the hospital. I am constantly reminded of the great amount of people God has placed around us, around Ruby, around me, praying for us and waiting to care for us when the time presents itself. So many uplifting messages and texts and calls yesterday, when I needed it most.

My aunt sent me a message telling me something that was told to her years ago: "It's okay to visit Pity City--it's just not okay to live there." I definitely visited a few times, but I have no intention of setting up a tent. While it's easy to get sucked down that road, it takes a lot of energy to stay there. Lehr always calls me a creature of habit (and he's right). The good news about that is, while I fight change initially, I also grab onto whatever the new thing is to make it my own very quickly. So while I was fighting this hospital stay yesterday, I was all in once I arrived this morning.

Ruby's counts are up from yesterday: ANC is 370! The nurse practitioner on rounds for Ruby this morning said as long as they continue to climb and she stays fever free, we will go home tomorrow. Since she's one of our staples (and we like her a lot!), she also said Ruby doesn't have to be hooked up to fluids unless she's receiving her antibiotic (about 30 minutes every 8 hours). Sa-weet!! That meant some freedom for my busy girl today! We did have to sit still for three hours to receive hemoglobin, but it's a small price to pay to not have to come back at the end of the week and sit in the clinic all day for that infusion.

Ruby does have a little cough. Well, because it's Ruby's cough, it sounds horrible, so I guess 'little' is not the right word. What I mean is that it is almost never present. When she coughs, you do a double take, but then you may not hear it for over an hour. We did one breathing treatment with respiratory today to see if it helped. (Yeah, Ruby didn't like that at all.) The tech did not think the cough was asthma related, but said the treatment wouldn't hurt. She then said she might come back to suction Ruby, because it's likely congestion. (Thankfully that didn't end up happening - Ruby doesn't care for suctioning.)

So now I'm in the room with my wild girl who is W.I.R.E.D. (likely from the hemoglobin). She only napped 90minutes, and was awake by 3PM. I ran her all around outside for over an hour before dinner, and we had a dance party after dinner. She acted sleepy, but is now (at 9:30PM) chatting happily in her crib non-stop. The good news is she is not hooked up to any lines, so I don't have to physically hold her still until she falls asleep like I've had to in the past. The good news is, I get to hear her sweet voice a little later today than I usually do.

Heavy

Galatians 6:9  Do not become weary in good work for at the right time, if you do not give up, there will be a harvest.

Total soul bearing here... Too mad and sad and pissed off to do anything productive around the house, so I'm blogging.

Tonight I feel a sadness, a weight, a heavy something. The closest I can compare it to is a grieving, which is ridiculous because Ruby is off of oxygen, her chest x-ray was clear, and she seems totally fine now. (Outside of having a neutropenic fever and cancer and all.) It's that brick-on-your-chest-can't-get-away-from-it something. I know I'll have to find something to watch to get me to sleep tonight to try and distract me, and I'm sure I'll end up with something like Seinfeld. I'm even more sure that I won't laugh.

This is the part of the journey when I find it all catching up with me. I have to imagine it hits at a different time for everyone, but for me, it's this round. Round five. Over five intense months in. This round has been hospital for 8 days, home for 3. ER for the night, home for 7 days. Back in the hospital for at least two days. Four nurse visits for blood worked in there. And best case, we only have to come in one more time for blood products in the few days following this visit before returning next week for another 8 days.

I think this visit is hitting me so hard because of what it comes on the heels of. We've been struggling with the big kids...regular kid stuff, but stuff that I can easily let get to me and weigh me down. Then this little winter storm hit. So instead of bringing them to a Sibling Camp on Friday night, weather cancellations popped up all over the place. So they got off of school early and Lehr got home early and camp was cancelled, so we hung out with friends Friday night. And then Saturday was supposed to be full of a few things I'd planned because they were going to be gone. Instead, we played in the snow, cut Ruby's hair, made dinner and played card games by the fire. 36 hours of absolute family togetherness.

Then the fever hit this morning and changed our weekend, and our day, and my second attempt in a month at a date night with Lehr. Ruby woke up a little warm, but her temperature only needed to be watched, not called in. But then it spiked, so Lehr took her to the ER. And they gave her antibiotics and it went sky high. And then Ruby's breathing got weird and she got very lethargic and sickly. And in an instant things went from great and 'normal' to upside down and scary. And in an instant I was reminded that our life is anything but our own right now; no plans can be expected to stick. (I know I know...there is a life lesson in there, but I'm too stuck in my negativity right now to swim in that.) And in an instant I had to remember how sick Ruby is and how serious things can get in no time at all. All of it, like a cold bucket of water poured on my warm fuzzy family feelings.

And I'm tired of it all. I want to get off of the roller coaster now.

So I'm having to lean. I'm having to cast worries. I'm having to intentionally pray on my go-to verse because this week I have become weary.

The best-laid plans of mice and men often go awry

For reals.

Two weeks in a row I secured a babysitter and made plans to take my amazing husband on a date. And two weeks in a row, those plans were thwarted by a visit to the hospital. (Yes, I'm focusing on how it affected me because Ruby is such a rock star through it all that she makes it easy to not focus on how it affects her...because it seems to not!)

Last Saturday night (30 minutes before the sitter was to arrive) Lehr and I were changing Ruby's port dressing when I noticed a small tear in the outer layer of one of her tubes. The risk of infection is so high that it warranted an immediate trip to the ER. Lehr took her in and hung out for five hours while they cut her line and stuck a new one one. They slid a clear sleeve over the new joint and shoved some type of epoxy around the joint to stick it all together. The rest of the week was uneventful.

Last night Ruby ate a great dinner and went to bed normally. She cried out at 6AM (unusual), and when I went into her room, she had a dirty diaper. I quickly changed her and put her back down; she slept until 8AM when I woke her up for church. That was the first sign something may be wrong, because she's usually our alarm clock between 7 and 7:30. She was a little warm, but 20 minutes later, her temp was down. We opted to keep her home from church; only the big kids and I went.

Just before we got home from church, Ruby's fever started to go back up, so Lehr took her into the ER. They started her on an antibiotic and gave her some oxygen. Right around the time they arrived, Lehr said her breathing changed and got a little more labored. The doctor on-call ordered a chest x-ray too, to rule lung issues out. Her fever went even higher before it finally came down (over 104).

A few hours later, Ruby was checked into the hospital for a 48+ hour stay. That is standard protocol when Ruby's counts are low: they have to make sure no cultures grow in her blood sample for a full 48. Bad news for Ruby this time...the Aflac Unit is full, so she's staying in another area of the hospital away from her favorite nurses.

Ruby had a spike in energy around the time they got into their room, but then she got sleepy and lethargic again. She took a monster nap and then woke up for dinner. Apparently one of her go-to meals (soup) made her a little nauseous, but after a little cuddling, she had some more Zocyn and Tylenol and felt better. She destroyed some plain pasta and wouldn't stop asking for more during our Facetime with her tonight.

Lehr is staying at the hospital overnight. He said the last report is that her ANC is 80 (basically no immune system); she will have to stay in the hospital through count recovery. Praying that it is less than a week!

Home Stay

Here's something that sounds like a great thing, but isn't always: staying home for count recovery.

Do not mishear me; given a choice between staying in the hospital through count recovery, like we did for rounds one and two, and going home for that time, I choose going home every time. But it's not like we are *really* home for that 3-week period.

Ruby finished her fifth round of chemo last Wednesday, putting her home Wednesday afternoon. Saturday afternoon we discovered a tear in her central line (the tube coming out of her chest), so Lehr spent four hours in the hospital with her to get it fixed (no notice). Sometime this week, it is very likely that Ruby will have to spend the entire day in the clinic to receive blood or platelets or both (less than a 24-hour notice). And if she doesn't need them both at the same time, that will mean two visits to the clinic for a day. Next week? We will be on lock-down at the house. She will not be able to be in public, and we won't be able to have visitors, due to low counts. The low counts always result in a 48+ hour stay in the hospital when she spikes a fever (about an hour's notice). The following week, she will be admitted for 8-days for another round of chemo.

Yup....sounds like a big ole complaining post, I know. It's really not that I want to complain as much as being home makes me realize just how much our life still isn't our own until this is all over. At best, any plans we make these days (at least involving either Lehr or myself and Ruby) are tentative. At best, she's home for seven days without a trip to the clinic or hospital. At best (and this has only happened once), she goes 14 straight nights in her own bed. That's not good enough for me.

So because our life is not our own, because we are so close to the end, because I'm ready to put this behind us, March can't get here fast enough.

Packing Up

James 1:17  Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

Some days I feel like if we're not packing, we're unpacking. There is a constant filling and unfilling of bags and cars, and no matter how many times I do it, I still haven't mastered it. But today is packing up to go home, so none of that matters. (Read: it's all thrown randomly in any bag I can find.)

Yesterday was a good day. Ruby chose to make it eventful by coming unhooked from her chemo (her second time doing that). There was no haz-mat team this time though because I saw the instant it came unhooked and the nurse came right in to help me. I had her in her crib, watching a speech video (more on that in a minute) and I had changed her diaper and checked her connections just a few minutes before. As I sat back down to my knitting, I looked up at her getting herself settled in a corner of her crib and I saw the chemo tube fall away from the Ruby tube.

The bad news with chemo or blood products (we've done that too!) coming unhooked is that it potentially slows down her discharge because we have to order new chemo and get her rehooked. The good news (and I think she knows this), is that it gives her free, unhooked time while we wait on the chemo. Since this is not my first rodeo, the minute the nurse hep locked her this time, I grabbed Ruby out of her crib, threw on her shoes and we did laps around the Aflac Unit until the new chemo arrived (maybe ten minutes?). When I say we did laps, this girl ran (almost), and belly laughed, and swung her little arms, and loved every minute of it.

So why was Ruby hanging out in her bed? This whole trip has found Ruby very energetic. VERY energetic, and not too keen on sleep. She's been routinely wired until 9 or 10PM (at home she's snoring by 8PM at the latest), and she's woken up before the sun, standing in her crib and saying, "Up! Peeeze!" sometime between 5:45 and 6:30AM. I was determined to not have that be the case again last night, so I didn't put her down for a nap today. Instead we watched a speech video for about an hour and powered through the afternoon. As expected, Ruby was fine with this. At 7:45, she could not keep her eyes open anymore. She even slept through being hooked up to fluids at 8:15. And this morning? 7:15. (I'll take it!)

So here we are, at the end of the 5th chemo admission (the end of the 5th round is when her counts recover, in about three weeks), still amazed at how well our girl is doing. Thanking God every day for the gifts He has given us through, and in, this process.