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 :)

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.

Almost There!

We're getting closer...the LAST bag of chemo for this round will be hung in about an hour!

Yesterday was very busy, and it went into a late night, so no blogging for me. Between nine and eleven yesterday morning, we had a revolving door. Seriously, SO many people came through here that many times they would be in the room at the same time! It started with an Occupational Therapist, then a volunteer reading a book, then the nurse for vitals, then a Music Therapist, then rounds with the whole team, then a Speech Therapist, then the nurse for Ruby's chemo flush. We didn't leave the room until noon when we got our lunch; that is very unlike us.

Ruby had a good lunch - her appetite has been mostly fine this round - and then we hung a new bag of chemo before she took a nap around two. She didn't nap much longer than an hour, but something is going on with this girl because she was W.I.R.E.D. last night. I started getting her ready for bed around 7:50 (which is later than she usually falls asleep at home), but I was reading books, singing lullabies, rocking her, rubbing her back, doing anything I could to get her to settle down, until 9:50. That's two solid hours. I have never spent that long putting Ruby to bed...seriously. I had a few rough nights with Eli when he was a baby, and maybe one or two with Maddux at some point, but Ruby has always been a quick sleeper, and self-entertainer. The issue in the hospital is that she's hooked up to three lines at night (fluids and chemo), so she tangles immediately when I just leave her in her crib, pulling the tubes tight and freaking me out.

Sooo...we may not be taking a nap today. Between the late nights a few times this stay and the early (for Ruby) wake-ups between 5:30 and 6:30, Ruby obviously has too much pent up energy from being hooked up to a leash. I got her out in the halls several times each day, urging her to push her cart through the halls, but sometimes she just wants to ride, which does nothing to help with the energy.

Everything is still on track for Ruby to go home after lunch tomorrow afternoon. Looking forward to going to school on Thursday!

Friday Updates

Not sure if I mentioned it, but yesterday was crazy good. Great nurse, productive therapy day for Ruby and I, lots of reading, LOTS of walking (PT), and all around great productivity (considering we are sequestered to a small portion of the hospital, mostly in our room). Our ability to get through speech and whatever OT exercises I throw at her definitely depends on Ruby's focus. (Good thing for us, Ruby is usually excited to 'work', whether it's speech or PT.) And yesterday, her focus was great! She napped hard, but was 100% when she was awake.

This morning's rounds were uneventful, as they should be this stay. I asked the Nurse Practitioner we love about how this whole thing ends after she finishes the next round, and it was confirmed that when Ruby recovers from Round 6, she can get her port taken out rather quickly. Music to my ears! I am so eager to get this girl in swim lessons!

The NP also asked me about therapy while admitted, and kinda pushed for us to utilize some while we are here. Apparently OT and Speech will come to see her this visit. (Speech already came this afternoon to check in with her and try to set a plan.) I'm always a fan of getting some additional eyes on what we are doing and what she is doing, but this also brings me some frustration. I definitely intentionally asked during round one, and maybe round two, about how to get services for her while she was here (since she was here for 50 days between those rounds), and I got nowhere. On the other hand, the time in the hospital has allowed me to sharpen my therapeutic skills, at least with speech. And when we are here, she and I usually knock out two 'sessions' each day.

Sidenote: I can't get video of Ruby's antics in the hallway because she tries to push her chemo pole so fast that I need to keep both hands connected to steady and slow it. Here is what she looks like though (no joke):

  

She seriously puts her feet on the ground, grabs the blue bars and says, "Dooooooh!" (Go) as she starts to walk so fast she's all but running. 

Round Five Updates

This is Ruby's first 'intensification' round of chemo, meaning it's no longer getting her into remission, but rather solidifying it. (I think?) The protocol for Ruby this round is a one-hour infusion of chemo (one we've not had before) three days in a row, and she's hooked up to a continuous chemo (one she's had many times) for seven full days. That means she started at lunchtime yesterday (Wednesday) and the continuous chemo will run through next Wednesday at lunchtime. The constant hook-up is not ideal, but it *should* only be one tube. Right now she's hooked up to three: one for each chemo and one for fluids. I did talk to the team about fluids this morning; she's been hooked up to them since we've been here.

I am not a fan of the fluids hook-up because I have yet to receive a reason why she needs fluids. Ruby has always been drinking enough (they chart her diaper output, so it's easy to tell), she doesn't have a fever, and the fluids make her face a little puffy and her diapers too full too often. I seriously cannot keep that girl dry, so she has ended up with a diaper rash the last three stays when they've had her hooked up. When I brought it up during rounds this morning (the team didn't have anyone I had met before), they looked it up in their chart and couldn't find a reason to have her hooked up at all.

So they said they'd decrease it to only at night.....

Baby steps, I guess.

Ruby is still happy, eating well, drinking well. It's amazing to me how well she's doing, considering that typically patients experience the cumulative effect of chemo, making each round a little harder than the last. It's almost like it's been the opposite for Ruby. While we've noticed some fatigue when at home during rounds three and four, her general ability to handle the chemo itself (while hooked up) seems to be getting better with time. The first two rounds found her a little picky with foods or fatigued during the continuous drip, but this time, she's running around, as much as she can on her leash, eating everything she ever does. She took a hard nap this afternoon, but didn't act tired before it, and woke up ready to go. SO ready to go, in fact, that our evening consisted of her pushing her pole (instead of catching a ride on it) up and down two long halls, again and again. I had to hold onto the pole myself to slow it down because I was convinced she was going to push it over with the force she was giving. And her speed was seriously of the run variety rather than the walk....crazy girl!

Ruby did have one oral med today: Zofran, which helps with nausea. We've never used it outside of when she's actually hooked up to chemo because she's not had any issues with that. At dinner, I thought we might have our first bout; she had some deep coughs/heaves a few bites into dinner, followed by some tears and hugs from mommy. But then she picked up her head, said, 'More!', and was fine the rest of the night. This girl is so mind-over-matter...it's not even funny.

Numero Cinco

Because Lehr is amazing, he offered to take Ruby to the clinic for her fifth admission this morning. Because he knows, out of all of the craziness surrounding Ruby's leukemia, the biggest stressor and 'I can't' for me has been clinic days, for admission or blood products.

I loathe them.

If you think that I've got a great attitude about everything and always seem so positive, catch me on a clinic day and you'll quickly change your mind. Because Lehr is Lehr, this time around I don't have to grumble and complain all day. I can stay home with the big kids tonight and relieve him in the morning after I get them on the bus. (In case you haven't picked up on it, Lehr rocks.)

Ruby's call time was 8AM. If it were me going in with her, she and I would have been called back around 10 for an eventual chemo hook-up sometime around 3, just as I'd gotten her to nap in the clinic chair. Thankfully, Lehr and Ruby saw the doctors first and then went back to be hooked up by 11. Seven days of continuous chemo with a few other chemos dropped in there for about an hour at a time over the seven days. This time next week, she will be back home.

This is round five. Five of Six. I can almost see the finish line now. And Ruby? She hasn't batted an eye at the whole process.

She's A Gem

Maddux's heart.

Seriously.

She's always been Eli's biggest fan, but as they've gotten older, she's definitely started giving back a little of the 'less nice' attitude he gives her all of the time. What remains at the core of it though...she adores him with her every fiber.

Eli has his first cotillion night tomorrow and was trying on his suit tonight in preparation. Maddux commented on how great he looked and tried to grab him to dance. He shrugged it off saying something about her not being 'fancy' and he was. Undeterred, she disappears, returning three minutes later, dressed in a nice black dress and holiday socks.

"Now we can dance!"

If Eli had not obliged her, I might have made him sleep out in the cold tonight.

Update

Around 4:30 yesterday, Ruby woke up with a fever. She was fine all day, playing and eating and drinking just fine, but got up, snuggled on her aunt's shoulder and started burning up. With two measurements of over 38C (our threshold for going in), I packed a few bags and Ruby and I drove to the ER.

We knew before we got there that she'd stay overnight because of the timing. We've kept Ruby out of anywhere she might pick up germs (church on Christmas Eve, holiday parties, even Publix!) for the last week because her counts have been dropping, and we had a pretty good idea that they would be at their lowest yesterday. Close enough: her ANC was 50 (we need it to be over 500 and trending up for them to give us antibiotics and go home).

In the ER they drew lots of blood to test for cultures and other things (including the ANC). She received antibiotics right away, but her fever didn't drop at all, even after a dose of Tylenol; I think they said it got over 104F? Around 8PM, Ruby fell asleep waiting for us to be admitted. Once in her room, they hooked her up to fluids and she got something to eat. 10PM was bedtime and she slept very soundly thorugh the night.

Ruby's ANC is climbing: today it is 70 and she has a bunch of monocytes (precursors to the ANC spike). Unfortunately, this morning's RSV test came back positive,. However, she has not needed any oxygen support. Her cough still sounds horrible, but there is nothing (other than suction) they can do to fix that. Ruby received hemoglobin, as her red blood cell count was low. Things were great for the first hour and then somewhere after that, the blood suddenly came unhooked. Seriously… One minute with that, and the next it was dripping out of the tube. That was a lot of fun :)

Ruby also got more antibiotics. And of course more fluids. (I despise because they make her puffy and give her a diaper rash.) We will be here until at least tomorrow, to rule out any cultures and to see how her counts behave overnight again.

Weak Sauce

Isaiah 40:29  He gives strength to the weary and increases the power of the weak.

I've had a lot of moments today (and last night) that were not that. That were not strong. That were very weak. They were flat out bad moments. Moments where I just let go of positivity and wallowed in "this sucks". Moments where I let myself say,

"You know what, I'm sad that Ruby and I are back in the hospital.
I'm frustrated that we planned a fun, homemade dinner for family that we didn't get to participate in.
I hate that instead of spending today walking and riding and skateboarding and playing along the belt line, Ruby is going to be hooked up to blood and antibiotics.
And I'm mad mad mad that Lehr took off Monday from work specifically and intentionally so that we could have one, (just ONE in this season of non-existent 'us time') day without school or work or hospitals or anyone else but the five of us, and now it can't happen."

But I know that is a slippery slope, so while I let myself go there a few times in the last 24 hours, I always go back to the blessings:

• Ruby didn't get sick on Christmas day.
• Ruby was in generally good spirits during her highest fever (instead of the obvious discomfort she was in last time). 
• Ruby got admitted to the ER very quickly, getting her out of the waiting room, which is oh-so important in this 7-10 day time frame that we've been protecting her from all indoor public areas due to no immune system. 
• I got to take Maddux to her Christmas gift of the Nutcracker before Ruby's fever hit.
• Ruby slept well through the night. 
• Ruby has RSV, but isn't showing any need for oxygen or other respiratory support.

He does give us strength when we need it, and He does provide perspective to remind us of our many many blessings. I'm so grateful He gives us grace to have weak moments as well.

Christmas

We hoped and hoped that Ruby would be home for Christmas, and we got our wish. It was so nice to have all of us together for Christmas Eve and Christmas Day! Ruby's counts were too low for her to go to church on Christmas Eve, but we still drove around and looked at lights together and celebrated in all of our other traditional ways.

Eli and Maddux got to sing in the Christmas Eve service, so they got all dressed up. Had to take some pictures, because they looked so fabulous and way too old. After we got sushi take-out (might be a new tradition!) and looked at lights, the kids got dressed in their PJ's (matching ones from Grandma Cathie, their favorite tradition) and they opened their gifts to each other.

The morning of was fun: seeing Ruby come down and find what Santa left was a treat. She got a crawl-thru tunnel and two hands-on toys. She (and Eli and Maddux) dove right into the tunnel.

I set up a Jesus scavenger hunt the night before, so after they got Santa gifts, we steered them towards putting Jesus in the manger (which we typically do before anything else). When they went to the drawer to get Him, I had our "Keep Calm And Find Jesus" ornament in there with the first clue. They had to work together to find the next clue based on the card (sometimes it was a verse or something that rhymed or whatever worked for me at the moment of me writing them out :). The hunt had some ups and downs, but in the end they got it and it was something we will hopefully do each year.

We had our traditional breakfast of dutch babies....the kids insisted. Presents and playing ensued. As far as gifts, Ruby loved the tearing into presents, but she had no real care for anything inside. It was so fun to hear her yelling in excitement as she ripped the paper, only to drop the box once she'd unwrapped it.

The only 'big' gift was ours to Maddux: she and I will see the Nutcracker at the Fox Theater tomorrow. She's been asking for about a year to go to the Fox (she's been once for one other gift), and this month she's been hitting hard with the request to see the Nutcracker. She was super excited when she opened that gift.

When Ruby went down for a nap, we all played "Clue"; it was the big kids' first time. They loved it and it was about an hour of fun and family....perfection.

My favorite memory from today was making dinner. Our 'tradiitional' Christmas dinner is homemade spaghetti and meatballs. Lehr and I made the meatballs yesterday morning, but the pasta itself is saved for the afternoon of, and the kids usually help.

Maddux was very into it, as expected, and Ruby participated as well. But her part was more of a 'grab and go' style: she would walk over to Maddux at the control center and look up at her with wide eyes. Maddux would give her a strand or two of (uncooked) pasta and Ruby would take off as she stuffed it into her mouth until she got to the back porch or it was gone, whichever came first.

Rinse and repeat.

We ended the day with a birthday cake for Jesus, something the kids have always had on this day. They asked for chocolate cake this year, which seemed to go over well with the rest of the clan.

Big Time

When you are in the fifth grade at the big kids' school, you get to go on an overnight trip with your classmates and teachers. For many years now, the destination was Jekyll Island, but after last year's trip, they shut down their school-trip-area for construction. That meant that Eli's class would have to find a new location. Driftwood Beach (right near Jekyll) is where they ended up, and it doesn't seem that anyone was disappointed by that.

The kids had a GREAT time, hiking, walking, even swimming (it was CRAZY warm in Georgia that week) at the beach. They learned a bunch and got a lot of hands-on education on the beaches and surrounding areas. Because of the late booking of the trip, there was not enough space to house Eli's entire 5th grade at the same time, so they did have to split them into two trips. Eli went for the first trip, leaving Monday morning at 5AM and returning on Wednesday at 6PM (thoroughly exhausted, I might add).

While the trip was fun, we did have an issue requiring a phone call home on the second day. Apparently Eli was outside of his cabin (as in outside) at midnight. He was in his PJ's, and he was all alone, knocking to get back in as the door automatically locked when he closed it. He claims not to know how he got out there....likely a case of sleepwalking. While we don't have issues with him randomly sleepwalking at home, he does get up in the middle of the night to use the restroom often enough, and he is not awake when he does that. My only assumption (because Eli is not someone who has shown enough bravery to go outside by himself in the middle of the night, given that he won't go upstairs to shower by himself after dark) is that he got up to use the restroom and being in an unfamiliar place, he ended up outside. Scary, crazy, stressful, but thankfully he woke up before anything happened.

Speech Update

As much as I get caught up on Ruby not talking as much as her peers, she is making a lot of progress. When I go through speech cards with her, she repeats (and even reads some of) the words pretty well. She just doesn't use those words on her own in every day situations yet. But she will read: apple, bus, and up on her own with no prompting or pictures.

When we go through the alphabet, Ruby is starting to anticipate the next letter sometimes. She also recognizes a few letters: B, M, O and sometimes E. She is also starting to 'comment' a bit here and there with real words. This last week she has told me 'busss' on two different occasions when we passed a bus on the road. And as we were reading a book this week that mentioned a knee, she stopped, pointed to her knee and said "kneeee!".

Here is a longer video with clips of some of the words that I run through with Ruby each day. She does really well most of the time; this particular day was just average, but you can still see a few that she reads on her own.

Perspective

As Ruby returned home, it hit me how long she's been at this already. It hit me how far we've come, and how distant those two month-long stays seem now. It hit me how normal this new life of hospital visits and clinic visits have come to feel. But it also hit me how smooth the ride has been.

Yes, Ruby has leukemia. Yes, our family is rarely under the same roof at the same time. Yes, Ruby had a severe reaction to a medicine, and had a crazy high fever a few weeks ago. Yes, Ruby has all but lost this fall's school and therapy attendance, possibly plateauing her progress. But the whole ordeal has still not been nearly as scary or hard as it could be. And because Ruby has somewhat sailed through her treatments so far, it's been easy to take the process for granted. It's been easy to forget that sometimes things don't go as planned. It's been easy to forget that sometimes bodies don't always respond to the medicine. It's sometimes easy to forget to celebrate all of the good news we've gotten along the way. Trying to recognize and dote on every good thing in our lives every day....

Update: Ruby is HOME! She came home this afternoon with great blood counts and a big ole smile. We are not planning to return to the hospital until after the holidays; round FIVE for her starts the first week in January. Until then, she will have twice/week visits from the home nurse to take blood; based on those results she may have to return to the clinic for blood or platelet transfusion(s) at some point. Prayers for kids who wash hands when they come home each day and no fevers throughout our home stay this time, please!

The Mansion of My Mind

I came across a blog this week that spoke so eloquently what weighs so heavy on my heart some days. The author spoke about her daughter, her daughter's chromosomal syndrome, and how it feels sometimes to live in that world. The line that jumped at me is one I could have written:

"it's hard living in the zone of parenting other people hope to avoid."

Hard indeed. For one, it's hard because I hoped to avoid it. Yikes.

I love my daughter. Seriously LOVE Ruby to pieces. Not a day goes by that I don't grab her face and have to stop myself just short of eating her up. And I want her. I actively want her in our family. But who she is isn't who I thought I would 'want' when Lehr and I decided to try for a third child.

So I get it. I get the parents that hope to avoid this particular zone of parenting.

I was absolutely one of those people. I was very close to discontinuing our attempts to have a third child when I found out I was pregnant. And that was almost exclusively because my age made me think that the odds were too 'in my favor' for a baby with Down syndrome. And why I was afraid of having such a baby was because I had no experience. I had no personal connections. I had no real facts. I had no idea what Down syndrome was except for the random and very lacking information I had read in passing or been taught in a biology class once upon a time.

That is why I am so passionate about World Down Syndrome Day and the Buddy Walk and getting Ruby's shirts out there and plastering her face and her videos and her story all over Facebook. It is my hope that those around our family - and their children and their friends - gain some insight into how not scary Down syndrome is. Is my hope that they are not like I was before I had Ruby.

Recently Lehr told a stranger about Ruby and her first question was "How old was your wife when she had her?" When he answered "36", that was followed by a head nod and a "yup..that's the age" type response. Ouch. It's not even that I'm offended by her perhaps insensitive or ignorant reply, it's more that it pains me to remember that I would have thought the same thing: pity and a 'that figures' response.

Back to the blogger's statement about living in this zone. She followed that with "It's hard having a child other people actively don't want." How I feel about that is something I get stuck on from time to time. It's not hard to love Ruby, but because of the lack of inclusion in so many areas of our lives, it is sometimes hard to parent her. Not physically parenting her in my home, with my friends, surrounded by family. But it can be hard to parent her when we're at a park. Or at the hospital. Or in a store. Or anyplace that she decides to act like she's two years old. We all know what two looks like: random tantrums, messy eating, social awkwardness, lack of 'listening ears', flat out disobedience. But I know when Ruby acts two in these ways, the spotlight is on her more, and for many people - people like pre-Ruby me - her behavior is chalked up to her extra chromosome: 'that figures'.

And it can be exhausting.

Exhausting to try and get her to blend. Exhausting to try and disprove any stereotypes I anticipate her audience is believing. Exhausting to feel I have to defend her 'special need' to everyone we encounter. Exhausting to feel like I'm always on guard, ready to stop her from overstepping her boundaries. Exhausting to parent her under scrutiny filled with pity.

Good thing she's cute.

In all seriousness, this isn't something that gets me down every day...it's just where my brain goes when it has a moment to wander every once in a while. Mostly it's one of those things that I don't even realize I've been thinking about until someone else voices it and then I feel a weight lift as I realize what I've unintentionally been carrying. So today I'm dropping the weight...hoping to not pick it up without noticing again.

Just The Facts, Ma'am

Last night was restless for both Ruby and I. She moved around all night; she often does the first night back in the hospital when she's suddenly hooked up to a line again. We got up around 6:30, which is on the early side for her, so by 10AM, she was already trashed. We managed to play and stay awake for lunch at 12:30, but she was falling asleep eating crackers, so I put her down before 1.

Just before lunch we had rounds. So far the doctors have always been so happy with the way Ruby is responding to the chemo; that is a blessing. This round is the final of the first phase of chemo, and the next two (the FINAL two) rounds are identical to each other. They will include one of the same chemo drugs she's had already and one new one. The continuous drip will last for seven days each time, and the team warns that flu-like symptoms tend to result. Ruby has been crazy resilient to any sick-feeling side effects throughout this process, but these two rounds may be the ones to make her feel less than great. We'll see!

The Cumulative Effect

Ruby has handled everything thrown at her so far with amazing energy and health. I know if it were me going through chemo and all of the transfusions, I'd have taken several 'sick days' from life by now, but our girl keeps on trucking. Sometime in the last round though, a few side effects of leukemia and the chemo have started to show up. This tends to happen as the patient's body experiences the cumulative effect of the chemotherapy over months.

• Fatigue: This one is a no brainer. I'm fatigued and I'm not even getting all of the meds or waging a war inside of my body between sickness and chemo. Ruby is still very full of energy, but maybe half of her days find her with a dip in energy around 11:30. It may or may not pick up after she eats a snack or lunch. 
• Vomiting: Ruby has yet to get sick on the chemo, and for that I'm so grateful. (Besides the draining effect it could have on her energy and nutrition, I worry that severe vomiting would deter her from wanting to eat or drink.) In the last month though, she has vomited small amounts several times. Usually it's within 30 minutes of eating, and it's never been a big amount or a big deal. Ruby doesn't seem bothered by it; the only way I'm aware of it is if I see it on her shirt or the ground next to her. It's almost like a burp...like a baby spitting up. At first I thought it was only a matter of her eating too much for what her stomach could currently handle. We started giving her smaller portions and that seems to help. She still has bouts of it occasionally, but it's not enough to affect her weight nor does it seem to bother her. For now, we are not medicating with Zofran.
• Chemo-Induced Peripheral Neuropathy: Say that three times fast. Heck, I can't even say it once! Ruby seems to be having some balance issues. Where she was so steady on her feet prior to the chemo, recently she's been stumbling more, losing her balance and falling into walls or down to a sit position. Some of this could be fatigue; her muscles are too tired to do what she's asking of them. It could also be CIPN, which can manifest in pain or loss of feeling in hands and feet, and also muscle weakness and decreased reflexes. 

That last one is the one that gets me right now. Ruby is already battling against decreased muscle tone and the developmental delays that come along with that because of Down syndrome. We have spent countless hours since she was born working on PT (for gross motor things like walking and picking up objects) and OT (for fine motor things like pointing and using utensils). Now I'm seeing some of her skills that she's worked so hard for regress a little. It just makes me sad because, even with her two years of hard work allowing her to achieve milestones quicker than expected, her development is still behind her typical peers, and this new challenge just adds to that.

When we registered Ruby for preschool it was intentionally chosen so she could be around other two-year olds and rise to their level both with speech and physical movements. Between her missing so much school and the CIPN, it's hard to see any progress coming from our efforts; even when she does go to school, it tires her out so quickly. It makes me worry that she is falling further behind those in her class with each passing round.

Not a complete downer post though.....our girl is a hard-worker. For reals. So this just means she will have to keep that up. When Ruby is not hooked up to chemo, she and I are outside at the hospital, playing on playground equipment and climbing up stairs. When Ruby is at home, she is outside with Lehr and the kids, pushing herself on her bike and chasing the soccer ball. It's just standard operating procedure for us. As long as she can, we will keep that up

Patience

Proverbs 19:21  Many are the plans in a person's heart, but it is the LORD's purpose that prevails.

How true. So many times during Ruby's treatment I find myself agitated, frustrated, anxious, downright MAD that things aren't moving faster (usually having to do with the lack of speed for the day's scheduled procedures rather than the speed of her actual treatment). And every time, while I feel justified in the moment, I do recognize that my frustration comes more from my desire for MY schedule and timetable to take precedence. 

I will usually talk myself out of some of this, thinking 'surely waiting 4+ hours at an appointment for anything to start is not the Lord's purpose.' But then I am reminded that it actually might be. Maybe I will have an interaction that leads someone (maybe even me!) to a deeper relationship with God. Maybe Ruby's presence in the hospital or clinic that day will impact someone in a way I can't even imagine.

Or maybe God is trying to grow me in the area of patience. Again. Can't imagine why since I obviously am still struggling with it so much.


Updates: This morning Ruby and I entered the Aflac Unit through the clinic (standard procedure). After we saw her doctors in the clinic, she was hooked up to her chemo at 2PM, which was the earliest start we've had yet! She then napped for a bit, but we did not get moved to our room until after 6PM. Insert need for patience here :) 

This round (#4) is the same chemo as round one and three, with the absence of one chemo drug (can't remember the name). Ruby will be on a continuous drip for 96 hours, and she will receive two liquid doses of chemo each day. 

All of Ruby's blood work is good; her numbers are satisfying the doctors in every way they can. This is the final round of Ruby's "induction" phase of chemo treatment (inducing remission). After this, she will have only two rounds left. We are officially at the halfway point of treatment! Only time will tell if this second half is longer or shorter than the first, but it's a milestone and I will gladly take it!