Friday, October 09, 2015

His Plan

Jeremiah 1:5  “Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.”

After Ruby was born we muddled through all of the 'why me' and disbelief, and quickly came to realize that God so knew what He was doing when He intentionally gave us (ME) time after Maddux to realize that our family was not yet complete, to realize that He is so wise in His plan of the years we (I) had between the girls so that I could explore two side careers and not feel pushed out of them when Ruby came along, to realize that the community Ruby introduced us to is one that we desperately need(ed) to be a part of.

And now, just two short months after He has given us another piece of the puzzle we call life, another family we know may joining us on this walk. Such a coincidence that this mother and I crossed paths the night before Ruby was born, several months before her daughter was born, both with an extra chromosome unconfirmed before birth. How interesting that we re-met about a year later and occasionally got together with the girls in the last year. Almost unbelievable that her daughter's doctor wasn't going to run a full blood panel at her check-up, but this mom insisted because of Ruby's recent diagnosis. Pretty crazy that Ruby and I were here tonight when they were admitted, just a few doors away from ours.

When I got the news of their admission, I put Ruby in her wagon and I started pacing the halls. I'm not a pacer, but I couldn't stay in the room and sit, even though it was shift change time, meaning we weren't supposed to leave the unit. I wasn't sure if I was reliving some of the emotions I felt when I found about about Ruby, or if it was just nervous energy as I tried to figure out what to say that would most help them in this moment. In the end I decided that it was my own confusion and comfort in the bigger picture. I don't know if they are part of the plan for us, or if we are part of the plan for them, but God's got put us both here together for a reason.

Oh What A Night

Such a better night last night! After much encouragement from friends, I spoke to the last night's night nurse about how to make things during sleeping hours more restful. (She was half of the team that participated in the previous night's 'activity'.) I had said conversation during shift change when Ruby's more experienced day nurse was there as well, and the three of us were able to figure out a schedule that cut the Ruby-waking interruptions down to only TWO times. Hip Hip Hooray!! She came in probably four times, but was stealthy in her methods and baby girls didn't even stir. (I thanked her nurse big time this morning!)
Needless to say, this morning Ruby woke up in a better mood. However, the effects of the four chemo infusions over the last two days seems to be catching up with her. Her spirits are still high, but her energy is noticeably less. She is still eating enough though, and that is a huge positive. She will receive her final chemo for this round in the form of a shot in about 15 minutes. After that, I will take her out to the garden to see if she perks up at all.

Thursday, October 08, 2015

Pausing in the Moment

Psalms 118:24  This is the day that the LORD has made; let us rejoice and be glad in it.

Oh, the sweetness of the days we have had at home. After Ruby's first treatment we had three days with just the five of us, and in this round we had a few as well. It's amazing how just a few days can have such a big impact!
While Lehr and I are trying to be very intentional about our time with the older kids, and as a whole family when we have the chance now, we are also keeping things as low key and 'normal' as possible. And God keeps reminding me that He will use those opportunities to recharge our family.
During one family dinner last week, Eli started folding his napkin into a neat square and then said something along the lines of, "Look, I'm Dad.", as he rubbed his arm in the same way Lehr does each night at the table. (Eli seriously nailed Lehr's mannerisms with the folding and was perfection.) Maddux and I burst out turned into a really fun family moment that we joked and laughed about for 5-10 minutes. In the midst of leukemia, in the middle of a school week, in the space of a typical dinner at home. (It even extended to the next night where Maddux did the same thing with another idiosyncrasy of Lehr's....the fun at his expense never stops!)
While we were home this week, the weather was 50% rain and 50% amazing. During the better half, I made sure to get Ruby outside to play in the garden. She loves loves loves to pick up the rocks, put them in the bucket, dump the bucket, repeat repeat. For a good 20 minutes she and I stayed outside, moving rocks around and just enjoying the moment.
Those kids remind me constantly to just enjoy the moment.

Last Night

Here's a complaint post for ya, just in case you thought too highly of me. Really tried to just post the schedule, but of course my commentary plays into it. This sucks for a child that sleeps 11-12 hours each night, without waking, and needs her sleep now more than ever to keep her body in tip-top fighting condition. Ruby barely made it through an early lunch today and was yawning significantly at 10AM. Oye...

Last night:
8PM - oral meds, vitals, bedtime
10PM - *eye drops, bright lights and loud voices trying to coax Ruby to 'open your eyes' helped make sure she was very awake
1230AM - vitals
2AM - ???? something involving lots of noise and commotion in the room
3AM - chemo start, including the opening of packaged paper gowns, putting on said gowns, and disposing when finished. Oh, and the monitor beeped incessantly through the whole thing (20 minutes), with the volume on high (something I've learned to fix with the click of two buttons)
4AM - eye drops and vitals again. What, you don't want to open your eyes, Ruby? I'll talk in a louder voice and turn the lights up brighter. Then when it's over and I clap and say "good job", resulting in you sitting up, I'll say, "Well, I guess you're up for good now!" (To which I reply, "No, we're not going to do that. Please turn out the lights.") Once they leave, Ruby stands up and tosses and turn and talks in her crib for 45 minutes now because she's totally awake.
6AM - chemo finish. More paper gown music for 15 minutes.
7AM - shift change - lights on and let's go

*These are the same eye drops Ruby had all through last week, including at home with Lehr and I. Most of our nurses, and Lehr and I are able to get the drops in quickly with a little cry, but then Ruby goes right back to sleep.

Wednesday, October 07, 2015

Round and Round We Go

Philippians 2:13  For it is God who works in you, both to will and to work for his good pleasure.

 God has prepared us well to handle leukemia...I honestly believe that. I really think Ruby's diagnosis at birth helped us, or at least me, be able to take some of this 'big' stuff in stride. And what a blessing that is, because even though I feel prepared to face it, I am aware of how 'big' it is.

But, oh how He still has much work to do on me when it comes to little stuff. Last week's curve ball with the schedule change-up and today's 'little' inconveniences definitely ruffles my feathers more than I'd care to admit. (Truth be told, it sends me into a tailspin full of angry and entitled feelings.)

Let me just start by saying that I know sometimes it is necessary for Ruby to just sit in one area and deal with the treatments we are following. During the first round we did it for four days straight! For me, it's knowing that we have to do that at certain points that gives me no patience for doing it at other times for no reason at all. Kinda like the change up of her schedule for this round of chemo; I know fevers and infections are going to delay our planned schedule, so I really need any sense of normalcy I can get. It doesn't help that I am a creature of habit also, and I like to know what is happening. You could say I like to be in control (actually not true), but I do know that when things are a bit out of control, I desperately grab onto anything that is 'normal' or routine like it's an anchor of stability. Things like these unwarranted curve balls rock my boat.
We were told to arrive at the clinic at 8AM this morning. This is the same call time we got last week, which turned into: arrive at 8AM, have a bone marrow aspiration at 9AM, recover until 10AM and then sit in a room and 'hang out' until chemo starts at 3PM (which ended up being 5PM). When Ruby's doc called yesterday to give me her blood test results (all good and right where they should be, which is a blessing!!), I asked about this week's call time. Specifically if it would follow the same 'schedule' as last week. She assured me that it was a fluke and she would personally check to make sure the chemo was ready first thing.

Unfortunately, I forgot that Ruby's care is a team effort, which is a good thing, but in this instance, got us into the same pickle. We arrived at 8AM and got called back around 8:30. We met with the nurses to have blood taken and Ruby's dressing changed, and then we met with the doctor (same one) to confirm the schedule for the day. We were soon after ushered into the clinic to start chemo. Soon after the nurse informed us that Ruby's schedule for this chemo couldn't start until 3PM because of the flow it needed to have with the infusion and shot. I totally get that. Unfortunately again, we were told we needed to 'hang out' (I really don't like that phrase anymore) until then. In a small area. With a 2-year-old.

Because Lehr could tell I was ready to pop and is so much better with keeping his cool and having a rational conversation in situations such as these, he thanked the nurse and got her to leave. Shortly after the doctor came back over and apologized and gave a good reason why she didn't know about the schedule. But again, we'd have to 'hang out'. Lehr pressed her for a reason why (because if there is one, we are open to it), but we didn't seem to be getting anywhere. He asked if we could please just move around the hospital for the next 6+ hours because Ruby is TWO. She went away and came back with good news that we could. (Not sure my stubborn streak would have kept me from leaving anyway, but I am a rule follower, so I was glad we were 'legal' in our extended leash.)

Just after three we started the chemo and about an hour later we were admitted into Ruby's room on the AFLAC unit. Ruby ate dinner, played in her new (old) room, and she and I went to the gardens for about an hour before bed. She has to have her eye drops every six hours again which means waking her up twice tonight, and she had to have one oral med before bedtime. Fortunately she did OK with that; she fought the nurse and I, but kept 99% of it down.

For now, Ruby and I are settled into the same room (a great one, in my opinion!) we had for the first big stay, and I scored us a sweet wagon with the best handling available. Two big wins, so today ends with a smile.

Tuesday, October 06, 2015

Tender Heart

As much as I call Ruby "Wreck-It-Ruby" and comment on her rough touch with people (and dogs), she is a very sweet girl and can be gentle at the right times.

In just the last week we were made aware of this twice. The first time was last week when Ruby returned to school after being gone for a month. The rest of the class was returning from Fall Break, which meant it was a little readjustment for them too. Ruby was the first to arrive and (I'm told) when one of her classmates came in and was a bit weepy, Ruby went over to him, bent her little neck to look at his face and patted his back. Would have LOVED to see that!
This afternoon we spent the entire non-dinner time outside. Eli and his friends were playing football which often results in a some sort of injury or tears because they insist on playing tackle even though they are not suited up. Today it was Eli who took a knee to the face and stayed on the ground in tears. I hopped up to check on him and before I knew it, Ruby trotted her little legs all of the way across the yard, up a hill, to check on him too. She squatted down to put her face near his and put her fingers through his hair.

I love that girl.

Last Day of Freedom

Ruby is crazy healthy, so of course she went to school again today. If you didn't know better, you'd never guess that tomorrow morning she'll be back in the hospital, hooked up to a chemo drip!

As she raced into her classroom this morning (after passing a sea of teachers and staff that were AGAIN wearing their "Ruby is a Gem" shirts), I grabbed her for a quick kiss, because she never gives me one in her rush to start her school day.

I came back to the school about 40 minutes early so I could park near the playground and watch Ruby's class during their outside time. Not wanting to let on to Ruby that I was there, I stayed in my car, but still got a pretty good look at all of the fun she was having with her friends. She isn't able to navigate the equipment as well as many of the other kids, but she still tries to climb the rock wall so that she can go down the slide. It was cool to see her moving around and trying to keep up with the rest of the kids!

Just before that, I had lunch with Eli. It was a surprise to him, which made it that much better. He did ask when Ruby would be able to come have lunch with him....sometimes I forget how much they miss the 'normal' with her.

Ruby chatted in the backseat the entire ride home; she is so much more vocal after being at school! I cannot wait to see what the winter/spring has in store for that girl!

Monday, October 05, 2015

The Hands and Feet

Galatians 5:3  You, my brothers, were called to be free. But do not use your freedom to indulge in sinful nature; rather, serve one another in love.
And how you've served our family.
This is a rambling, insufficient but intentional, huge hug of thanks to all of the many many many who have served our family in the last few months. Since finding out the news about Ruby, friends from our past and present, teachers, parents, kids, neighbors, family, acquaintances, degrees-of-separation friends/acquaintances have all contributed to covering (SMOTHERING!) our family with love and prayers.

We were already aware how beyond blessed we are to have the family and friends that we have, but I am constantly humbled by the way we’ve been inundated with caring comments on my blog, notes of encouragement on facebook, emails full of scripture and encouragement, phone calls just to leave a message of love, meals, gifts, photos of my older kids doing fun things (since I don't see them while I'm in the hospital), and childcare-childcare-childcare for Eli and Maddux over the past several months. I am forever thankful for every single one of those very intentional and gracious acts of kindness. You all need to know God speaks to our family through these amazing moments. This journey has not been unbearable, and it is in huge part because you all have been the hands and feet of Jesus to our family.
We could not face this without you!

Saturday, October 03, 2015


Ecclesiastes 5:19  And it is a good thing to receive wealth from God and the good health to enjoy it. To enjoy your work and accept your lot in life - this is indeed a gift from God.

Another short blog hiatus, as we are home. I definitely stay away from the computer more when we are here; if you want to cure yourself of an email or  Facebook addiction, spend an extended time in the hospital where you rely on it for contact, and then leave said hospital and notice that you don't have to rely on it. Works like a charm!

Yesterday morning Ruby finished her last IV chemo for that stay just before breakfast. She didn't have much of an appetite, but she did have energy for running around the gardens. Somewhere around 10AM she got a little clingy. It seemed like she was not feeling too well because she just wanted to lie on my lap or shoulder and suck her thumb. (That's very unlike her in the middle of the day.) The doctor told us before we left that her chemo this time is 30x stronger than her first round. (To which Lehr responded, "That's fine because Ruby is 31x more awesome.")

Rounds confirmed that we would go home once Ruby had her shot and waited an hour post-shot 'watch' period. The doctors were not terribly concerned about low numbers while she's home this short time; when she returns and resumes this same chemo protocol, that's when we expect to see numbers drop drastically. That means that Ruby can go to Gigi's tomorrow and school on Tuesday.

Ruby's hair is's definitely starting to be noticeable to me. And this morning she woke up a bit fatigued and clingy. She had a blast at Gigi's, but she got tired before it was even time to leave, which is rare for her.
This round of chemo has a side affect of conjunctivitis, which means we do eye drops for Ruby every six hours, even for two full days after chemo. She does not love that, especially in the middle of the night, but it is SO much easier than the oral meds from last time, so I'll take it.

Thursday, October 01, 2015

Learning to be Content

Philippians 4:11-12  I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.

That verse does not describe me, but rather what I aspire to. Today I am more content with what Ruby's schedule is, and that is going to have to be enough.

Ruby had a good day, but a looong night. While she's on the current chemo, she has to have eye drops every six hours to help combat conjunctivitis. That means prying her eyes open around 10:30PM and 4:30AM. Not so fun for my girl. The late night one went quickly and she fell right back asleep, but the 4:30AM one kept her up for quite a while, shifting around in her crib and talking to herself. Then they started her morning chemo at 5:30, so it was after 6 before either of us got back to sleep. Shift change for the nurses happens at 7, so total sleep was not much.

Despite all of THAT, she was happy all morning. A new-to-me doctor came around just after 8AM to check on her and authorize that she receive a Hep-lock so that she could be unhooked for the day (until her 5PM chemo). Hip Hip Hooray!! Ruby ate a great breakfast, showing no signs of nausea or even loss of appetite. We ran around the fountains, worked on speech, perused the halls, and played with a therapy dog until 10AM when it was time to come back for more fun eye drops. We stuck around the room after that, waiting for rounds. However, they never came. Still not sure what happened as rounds with doctor(s), nurse practitioners, pharmacists, nurses... happen every morning between 10-12. So no major answers today. I did talk to the doctor from this morning about whether Ruby's change-up was a change in treatment, or just a mis-explanation/understanding. He said the later....nothing has changed from her original treatment plan.
Lunch followed by a thorough nap ate up the middle of our day, and when Ruby woke up it was 4PM which is eye drop time again. With chemo starting at 5 (and chaining her to the room for three hours), we ran around once more to get some wiggles out. It turns out that wasn't too necessary because the chemo this evening seemed to take some of her energy. Her appetite too; she ate very little at dinner and wanted to cuddle and suck her thumb. Ruby's smiles and personality were still intact though, as she charmed all of the nurses during vitals and hall interactions. (She even gave Zoe, one of our favorite nurses from last time, a running hug.)

Hair is definitely thinning. When I brush it or run my fingers through it, Ruby's hairline hasn't changed, but for the first inch or so from line to back of the head is short, thin hair. It does not reach her ponytails. Thankfully, she still does have ponytails, but they are thinning.

So the plan (though always unofficial) at this point is for Ruby to receive her last installment of this first set of chemo for round two tomorrow morning at 5AM. That will finish at 8, and three hours later she will get a shot of chemo. At that point, we *should* be cleared to go home (and give her eye drops ourselves in the middle of the night). Then we *should* return on Wednesday morning and repeat this same 48-hour process, but stay in the hospital at the end of it.

Wednesday, September 30, 2015


James 4:13-15  Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

Once again, my ability to be flexible, or my ability to not be so caught up in my plans/schedule, is what God is working on. How soon we forget the lessons we were just taught!

This morning we brought Ruby into the clinic for a bone marrow biopsy (piece of bone) and aspirate (sample of bone marrow) (both of those are done to test for percent of leukemia cells) and a lumbar puncture (to test for leukemia cells and to administer chemo in her spinal cord/brain). Upon arrival, we were told she would just be having the aspirate; just before the next round of chemo she will have the lumbar puncture. We were also informed that her platelets and hemoglobin were at good levels and her ANC was over 2000 (that's like as high as someone without leukemia might be!!).
The procedure was a quick one, and before we knew it we had Ruby back with us. The post-op nurse informed us that we would start the chemo at 3PM, so we had the rest of the morning/afternoon to just hang out until we were given a room on the AFLAC unit. Before we had a chance to leave the room to grab some food (Ruby hadn't eaten all morning), one of her doctors came in to check in with us. I can't remember how it came up, but we ended up discussing the specific protocol for this round of chemo, and it became apparent that the plan that Lehr and I understood to be scheduled was not at all what the team had on their agenda.

Ruby's chemo this time is more intense. That's basically the only common characteristic between our plans. As it turns out, Ruby will have four doses of chemo on a 3-hour drip every 12 hours. With the first one starting at 5PM tonight, that puts her last one on Friday morning. I can't remember the exact hour, but at a specific hour towards the end, she receives a shot of chemo to finish it off. At that point (Friday), Ruby will go home until she repeats this same protocol (still in Round 2 overall) on Wednesday. That time in between these treatments will bring her numbers low, which makes the second part of this round more intense as it hits her when her counts are low.

And now the plan differs slightly depending on which doctor you talk to. She could go home earlier than 21 days from next Wednesday or she could be here longer than expected...28-35 days.

This does not help this control-freak mama. Plus we got tickets for both grandmas to come and help with the older kids on different weeks to maximize coverage at the house so that Eli and Maddux are less disrupted. Those tickets cover about half of Ruby's stay now instead of all but three days.

I know this journey is one that will have changes and bumps in the road due to Ruby's tolerance to the treatment(s) and sudden illnesses and infections. But regarding the expectations for Round 2, both Lehr and I (plus a friend who was here during rounds to hear the plan) received the schedule at least three different times and it was explained to us that it would follow the same '96-hour drip of chemo and 21 days of stay' flow as last time. This newly changed schedule seems to have no cause.
So here Ruby and I sit in the hospital, our car packed to the gills with toys and clothes and food for three weeks when we are only going to be here for two nights. Nothing to do but shake my head and laugh at my grand plans to be so prepared.

While I plan to ask for answers during rounds tomorrow to hopefully understand the situation better, I know the doctors are doing what they think is best for Ruby, and it's likely a big misunderstanding. I also know that it will play out to Ruby's benefit to have the schedule change, because that's usually how God works. Finally, I know that this whole process is a big ole reminder for me to let go of my need to feel in control and to let God work through me.

Tuesday, September 29, 2015


I've posted before about how much Ruby attending school means to me, but it's no longer just about her attending any school. Now, more than ever, I want her to complete her treatments so she can attend this school.
Ruby's preschool has welcomed her from the very beginning, but the last three weeks, especially today, go beyond just they are full-on embracing her. While she was in the hospital, the director, her teachers, and several parents reached out with cards and emails. One of the other teachers/staff made this awesome ribbon for all staff to wear in recognition of Childhood Cancer month, specifically supporting Ruby (hence the ruby in the middle).
Today when I brought Ruby in for her 'cameo' (her one school day sandwiched between long hospital stays), we were greeted at the door by a staff member wearing a red "Ruby is a Gem" shirt. And then we saw another. And another. Every single staff member was wearing a Ruby shirt. And then I saw a few parents wearing them. And kids! Ruby's class was all decked out in red or Ruby shirts. (And Ruby went right in and started with Play-dough like she'd never missed a day.)


Just so you know, this non-crier barely made it to the car before the tears came. I called Lehr and could barely relay to him what had transpired.

And when I went to pick her up there were MORE parents, and cards, and support, and love.
As much love as this little girl gives out, she is receiving back right now.

Monday, September 28, 2015


I know my updates have been next to nonexistent in the last week. We've been too busy enjoying all things 'typical' in our life! And how perfect that Ruby's release lined up with the kids' school Fall Break.
First off, Ruby has only been home a week but it feels like a month. What a blessing!! We have all fallen back into our routines: morning smoothies, Ruby tearing the house apart, family dinners, Mommy going to boot camp, everyone sleeping under the same roof each night... If you ever think you may be taking the little things for granted, try an extended hospital stay to remind you how much you cherish 'boring'. To say the kids have been excited to be together again is a huge understatement. Especially Maddux and Ruby; they have been inseparable.
Ruby has been the most busy of all; I scheduled speech therapies, physical therapy, Gigi's and a doctor's appointment during her stay home, plus we got her new arch supports fitted. Her PT was especially excited to see her, and she brought her an adorable CURE doll with pink hair (and a port!). Grandma and Grandpa were here for most of Ruby's week home also, which added to the fun. As sad as I am that we didn't get to go to the beach, as planned, this year's fall break is one we all enjoyed thoroughly.
Ruby got a little warm last Monday morning, but never near the temperature that required a call and/or visit to the clinic. When she did return to the clinic at the halfway point for a check-in, her numbers were GREAT! No need for hemoglobin or platelets and her ANC was 750! (That's really good!) During the rest of the week, Lehr and I got to practice 'flushing' her line, and we took her temperature at least a dozen times. Tomorrow is our last day home and Ruby is celebrating by attending school....words cannot even express my excitement!
Wednesday morning promises to be another big one: Ruby will have another bone marrow biopsy and another lumbar puncture. She will go straight from recovery back to the AFLAC unit and start chemo. She will remain there for another 21 days. This round should be a bit more 'intense', as the doctors put it, which means the side affects of the treatment should be felt more.