No Dance For You

For the last several years, Maddux and Lehr have attended a father-daughter dance, either at a local church or at Maddux's school. This year they opted for one at a church because the school one was held the weekend of the Sib Camp.

As luck would have it, the week before the dance, Maddux got invited to a good friend's birthday sleepover on the same night. At first we thought we could swing both, leaving the dance a little early, but after rechecking the times of the dance, we realized it would have to be one or the other.

Of course, Maddux was in tears, unable to choose between two things she wanted to do so badly. In the end, she chose the party, but she seemed most upset that her choice meant Lehr would miss out on the dance.

To take the place of a fancy Maddux-Daddy date, the two got dressed up tonight and went out for dinner and a movie. Maddux took a shower and let me blow dry her hair and apply a little make-up. She promised to let Lehr open the door for her and not run or sit on the floor in her dress.

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!

Sib Camp

Eli and Maddux attended a 36-hour camp this weekend. Camp Sunshine is a great resource for families going through childhood cancer. There are events throughout the year, family camps, and sibling camps. We hope to attend a family camp next fall, since Ruby was unable to attend this year during her treatment. A few weeks ago, Maddux and Eli were signed up to go away for two nights during the sibling camp. This camp is only for siblings (age 7-18) of kids with cancer. The focus is totally on the siblings...giving them time and attention and something fun that is just about them (and not about the hospital or sickness).

I dropped the kids off at the the Camp Sunshine house on Friday night. They rode a charter bus about an hour away to the campsite with other kids from the metro area. Once they arrived (per both Maddux and Eli), the fun started and didn't stop until I picked them up first thing this morning.

Maddux said she and the other six girls in her cabin stayed up late giggling. Perfect. She loved her counselors and she thought it was so cool that she got to pick her activities without any restrictions. She mostly did arts & crafts and fishing, but she dabbled in magic and archery as well. When I picked her up she gave at least two other girls hugs, and waved good-bye to everyone she saw.

Eli said his cabin was allowed to stay up until 11:45 the first night. He opted to play in the gym that whole time: basketball and dodge ball. For his activities, he picked sports, magic and drums. While he had a great time, I didn't see any hugs from him, and I doubt Eli stayed up late giggling. He is super excited about the magic though, and has shown me magic tricks constantly since he got home.

Hero

Eli had to write a hero essay in school. Last year he chose his grandpa, my dad, and wrote a very cool essay about him. This year he chose me, and didn't tell me until it was done. It was a good day.

My Hero  By: Eli Eliason

    Go Mom! Dad, I am deeply sorry, but Mom is the best! She feeds me so I don’t go hungry, she helps me with my homework and she plays outside with me when I ask her to, but only if it is warm and sunny. If you ever could imagine someone who had awesome grades, was a grade school teacher, and has to take care of three crazy children -  that superhero of a person is my mom!

    Since I was a baby my mom has shown 100% dedication to me, Maddux (my sister), and Ruby (my younger sister). She has always, no matter what, responded to our everyday distress calls and hoots of enjoyable laughter. Even if she is in the middle of making dinner, she will always take time to get up and help us with whatever we need help.

    In my opinion, my mom is #1 at leadership. She may not be a manager of a football team or be the head coach of a baseball team but she can lead a family just as well as the best dad in the world! Whenever we go on a road trip she is always prepared with diapers (Yes!), wipes, food, and entertainment for the big long trip awaiting us.

    Also, my mom cares a whole lot about me. Whenever I think of her caring, I think of the saying ”Unless someone like you cares a whole awful lot nothing’s  going to get better, it’s not.” (Dr. Seuss) She probably doesn’t care if I am 1,000,000 miles away,  she still loves me no matter what, even if I am sad, happy, angry, full of fear, or surprised. She cares for me more than a chocolate Oreo ice cream full of hot fudge with whipped cream and a cherry on top!

     All I am trying say is my mom is the nicest and the gentlest person you’ll ever meet! She is a small person with a HUGE personality and lots of leadership, dedication, and caring. She will help you out whether you are one or twenty. If you are looking for someone to help you out, my mom can do it all!

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.

Staring Down The Final Mile

Jeremiah 29:11  For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Proverbs 3:5  Trust in the Lord with all your heart, and do not lean on your own understanding.

Here we are, on the eve of getting admitted into the hospital for another eight days of continuous chemo. This drip is different because it is expected to be the last. Ruby has responded exactly is the doctors hoped throughout this process, so at this time there is no reason to expect any further chemo.

Praise God. Praise God. Praise God.

Even though I give all glory to God in this, I do struggle a bit with that. We have met so many families whose journeys have looks so different from ours, often in devastating ways. Many times when I think about how Ruby is being healed, or when I hear other people give God the glory for similar healings, I have to wonder what a double-edged sword that can feel like she someone that has not been healed. God is good, regardless of the outcome, but when we say, "praise God", or, "God is good", as a result of a good turnout, what does that insinuate about the outcome? That it was God's doing? If that is the case, what about when the outcome is not good? Is that still God's doing?

So then I get all lost in my thoughts and I think about what God gives us versus what the world gives us. Where do you draw that line? 

For me, I believe definitively that we are all born as we were meant to be born. I know that becomes very difficult when it applies to miscarriages and fatal diagnoses... In those instances I choose to believe that God put each baby on this earth in the way they were meant to serve. That means that a baby that was conceived to die had a different purpose then a baby born without immanent eternal rest. 

When applied in my own life, that means that I absolutely believe that Ruby was stitched together with three copies of her 21st chromosome by God's design. But I don't necessarily believe that He intended for her to have leukemia. Just like I don't believe that He intends for every other cancer patient to have received the diagnosis they did, or car crash victim to have gone through that crash. I know, without a doubt, that He will see us through everything the world throws at us, but I don't know that he laid out the plans for starvation and human trafficking and drive-by shootings. 

So where does that leave us? I don't know. I don't know that it makes a devastating diagnosis or catastrophic event any easier to deal with. The only thing that can make that in anyway tolerable is a certainty that we have someone there to help us go through what the world gives us. We have a Father desiring to walk us through the hard times and provide rest when we need it most. We have a Son who was willing to die to ensure our relationship with that Father. We have a Holy Spirit, there to help navigate every moment of our time on earth. And I am eternally grateful for that, because when I compare Ruby's leukemia journey with many others I have seen, I need something to hold onto. There is guilt associated with her remission, with her lack of complications, with her overall health through this process. And I need a way to work through that guilt. I need a reminder that we were not created for this life, but rather the afterlife, where children don't suffer and pass away.

The Dress

I could write a blog every day for the next year about the outpouring of love and prayers and gifts and cards that have been showered on Ruby and our whole family. Even now, six months later, we still receive things in her mailbox and on our front porch and in our inboxes that We never would've expected. Today I'm sharing about a special gift we received last fall.

Ruby's red dress. Oh how I love it. It is fancy, it is red, it is over-the-top, it is perfect. Since Ruby was a few weeks old, we have been going to Gigi's Playhouse pretty much every Thursday for group therapy. At least as much for me as for her. The families and therapists we have encountered there have become like family to us. One therapist in particular has four legs. Ouie, a therapy dog, started coming right around the time Ruby started walking. Of course Ruby gravitated to Ouie immediately. John, Ouie's dad, would help Ruby walk Ouie with a leash and always have special attention to Ruby. In addition, when Eli and/or Maddux would tagalong, John always entertained and chatted them up as well. 

When Jon found out about Ruby's diagnosis and long hospital stays, he offered immediately to meet the kids and I at the park and time so that Ruby, and Eli and Maddux, could play with Ouie.

When we attended the Buddy Walk this fall, Ruby was not with us, but her Team was there in full affect. To my pleasant surprise, Ouie and both mom and dad came as well. I love that they came out to support, even with Ruby not there. In addition, they brought along a very special gift. Ruby's red dress, a little black purse, and a bow for her hair.

This was such a great gift because it had nothing to do with Ruby being sick, but everything to do with Ruby being Ruby. In true form, when Ruby puts the dress and the headpiece on, she loves it and carries the purse around with pride.

We are so grateful to have met some amazing people who have been infected by Ruby's spirit.

The Tattoo

Even though I got the tattoo several months ago, it's just now making it's way into the sight line of those around me. And while it's my tattoo, it's only right that I blog about it since it's all about the kids.

Since it was already on my mind before she was born, after Ruby's birth my desire to get some ink representing my kids was even stronger. I thought long and hard about what might represent them, and 'light' was what I always ended up on. They are the lights of my life, and it is my belief that God created them to be His light on this earth. But He definitely created them, and their light, differently....and how. So what I ended up with was a sun, moon, and star, each for a very specific reason.

Before I showed the tattoo to the kids, I made them each a card that told them why they were my sun or moon or star, and each included a verse. Below is a general synopsis of what I told them.

Eli is my sun. The sun has a male connotation, and it represents order. Eli is nothing if not orderly and a bit Type A. More importantly, his smile is something that people have always commented on, and I feel that it lights up the room. God gave us the sun to light the earth.

2 Corinthians 4:6 For God, who said, "Light shall shine out of darkness," is the One who has shone in our hearts to give the light of the knowledge of the glory of God in the face of Christ.

Maddux is my moon. This was the first one that became obvious to me. Not only is the moon often linked to a female, but it is also constantly changing and offers illumination in times of dark. I always thought of her as the moon because God gave us the moon to reflect light. Maddux has always been that amazing soul that reflects the light, the good, of others.

Psalms 89:27 "Like the moon it shall be established forever, a faithful witness in the skies." Selah

And Ruby. She is a rock star, but she is also the stars to me. Though she be but little she is fierce. I think that stars are God's way of poking holes in the darkness. Stars represent goodness, truth and the light of Christ. Amen, right? The 8-point star, specifically, is linked to baptism and redemption. Seriously, this girl has redeemed me and points me to God daily.

Genesis 1:16-18 ...He made the stars also. God placed them in the expanse of the heavens to give light on the earth...and to separate the light from darkness; and God saw that it was good.

Cotillion

Eli and some of his classmates just finished up a month-long lesson in etiquette in the form of 'cotillion'. This is not something I grew up with, so it's been a learning process for me as well. A local cotillion teams up with our elementary school each winter to invite the 5th graders to join for a month and learn basic manners, basic ballroom dances, confidence, etc. While Eli was not too thrilled when I first told him last fall, he seemed kind of excited on the first day, and by the end he was definitely enjoying himself.

The girls had to wear dresses and nice shoes, and they had to purchase white gloves. The boys had to wear shirt and tie and sports coat. While Grandma Cathie was here this fall, she took Eli on a special date to find a suit, and the week before it started, Lehr helped Eli pick out a few bow ties (Eli's choice).

Because of the way the sessions fell with Ruby's hospital stays, I got to drive Eli every week also, meaning we got to bring Drew with us most of the time too. It was so crazy to see these two best friends so grown up looking. Of course, their backseat antics kept reminding me that they are anything but grown up.

I was so grateful the director allowed me to take pictures on the second week (for our 5th grade slide show); normally parents don't get to stay and watch, but I had a front row seat for one session.

Eli really did seem to enjoy himself, but he did tell me that it was a whole lot easier dancing with someone from a different school, "because you don't know them so it's not weird." He also commented that he always seemed to get paired with the tallest girls. The plight of a vertically challenged boy.

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!

New Hairdo

When we told the kids about Ruby's leukemia, one of the things we discussed was her likely hairloss. This made Maddux cry; I think the thought of it 'changing' Ruby made her sad. 

In true Ruby form, she has maintained her Ruby-ness throughout her chemotherapy. Her hair thinned significantly during round 2, the strongest round, but it started filling back in quickly after and has always remained 'enough' to justify not cutting or shaving it.

This week Ruby started shedding again. First it was just some hair in her bed, then I noticed it all over my clothes and hers, all day everyday. We told the kids last night that we would likely have to cut her hair this weekend, but I was still kinda waiting. This morning I ran a brush through it one time and picked up enough hair in the bristles to snap me out of any denial: Ruby is losing her hair.

After we enjoyed the snow for a few hours first thing this morning, we all piled into our bathroom and cut our girl's hair. She was very cool with it, occasionally reaching up to feel where her hair used to be. The big kids thought it was pretty neat, and weren't upset. My hair-cutting skills leave much to be desired, compounded by the big chunk that fell out of her head this morning and the overall unevenness of hair to work with, but I think we all agree that Ruby's new haircut makes her even cuter.

Odds & Ends

Ruby's hair is falling out again. I've seen a few small clumps in her bed, her clothes (and me) are constantly covered in it, like she's a dog that's shedding, and when I brush it, I end up with a handful. The only way you can tell by looking at her is if you notice that her faux-hawk (the long hair down the middle of her forehead back to her neck) is getting skinnier. The sides of her head look fashionably shaved, though we've not taken a razor to them. This really doesn't bother me; as much as I love her hair and it's addition to her personality, the hair loss has come and gone so much that it's never caught me off guard. I was prepared to have to shave her head after the first week, so everything after that has been gravy.

Ruby's speech is exploding and everyone is noticing. Two of her speech therapists commented on it this week; she's picked up the new sounds of 'g', 'f', and mixing of vowel sounds (like mommy, ruby, bye). Last week, Ruby brought me a toy and said, "Hepp. Me. Peez." Totally unprompted, totally independent, and totally clear. I told her teacher to watch for (and require) her to ask for help that way from now on, and this morning she grabbed me as I picked Ruby up to say that she and the other teacher are noticing so much talking out of her.

We pulled out the potty seat this week. I bought it over the summer with the intention to start potty training as soon as school started and the big kids were away during the daytime. However, our plans changed significantly and I didn't think it would be a good idea to try and explain to Ruby that she had to 'hold it' while being hooked up to fluids and chemo. Nevermind the potential mess of it all, again, while hooked up to tubes and whatnot. So we haven't touched it, even though she stays dry most of the morning hours despite drinking plenty. We still have one more round of chemo and up to three more hospital stays for 2-8 days, so I'm not officially training her yet. She does sit on it when she gets up in the morning and before she goes to be, and before and after her nap. No success yet, but we do have some M&M's, just in case.

Skiing

The kids had such a good time skiing last year that it was on their definitely to-do list this year. The only weekend that lined up for us was MLK weekend, but even that had a scheduling conflict on Sunday morning. Most people would throw in the towel given that wrench in the very middle of a three day weekend, but not Lehr. (He's kinda like a Super Dad.)

After Eli played in the worship band on Sunday morning, the three of them jumped into the loaded up car and drove to North Carolina. Since the mountain is only a few hours from us, they got there in time to do night skiing. Then they woke up on Monday and did a full day skiing.

Maddux and Eli had a great time with Lehr, trying even more runs than last time. While it was significantly colder this time than last year, they had the right gear, and the fresh snow made it worth it.

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.

Speech! Speech!

This girl is starting to take off in the speech department. For reals. She comments on everything, and people other than me are starting to know what she's actually saying! A friend watched her while I went to a doctor's appointment this week and she was blown away by how much Ruby was talking.

The biggest example of this is her reading a book, or singing along with songs on the radio, or talking about her body parts. I am trying to get it on video, but until then, it goes like this. I say a body part (elbow, foot, chin, etc.) and she points to it and repeats the body part. At this time, she can identify about fifteen of them and at least half have a word approximation that is pretty darn close. She also continues to surprise me with random words that come out so clear. Today was "Thank you" and the other day was "umbrella".

This is not speech, but it's OT....Ruby loves to feed herself and often will fuss at me if I try to feed her instead of handing over the utensil. She's also starting to be 'silly' during all tasks, so while she knows what to do, she will play around some times (this happened a few times during the video.) Ruby is still working on keeping her tongue in and lips together while chewing; process improvement :)