Monday, February 08, 2016

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!

Sunday, February 07, 2016

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.

Friday, February 05, 2016

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.

Thursday, February 04, 2016

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.

Tuesday, February 02, 2016

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.

Monday, February 01, 2016

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.

Sunday, January 31, 2016

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.

Monday, January 25, 2016

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.

Sunday, January 24, 2016

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!

Saturday, January 23, 2016

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.