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.

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.

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!

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!

Halfway!

This morning marked halfway of this hopsital stay! That came SO quickly this time!!

Our Friday the 13th started with a bang: Ruby slept until just before 8. When the nurse came in, Ruby sat up, so I got up too. I walked over to her crib to kiss her Good Morning and when she stood up to come to me, her chemo tube stayed on the bed. It did not appear to have been unhooked for long, as there was only a small amount of toxic orange on her sheet, but we would still have to play detective and catch-up all the same. The team narrowed down the amount they thought she missed and recalculated her dosage rate so that she shouldn't miss a beat with her schedule. (This was after the evacuation of everything possibly touched by the chemo was totally removed, including the Unit Directors top shirt, which he wore while he personally changed out Ruby's sheets.)

Ruby has been a little less than her usual 100% energetic self today. More thumb sucking and cuddling with Mommy (not complaining!!). She still ate a good breakfast and an ok lunch, but was picky about what she did consume. Just as I've seen before, she will bounce in and out of the good and bad; one minute she'll have her head on my lap, sucking her thumb, and then she'll pop up with a smile and start talking. Our days have been spent doing speech, visits from nurse or doc, taking a few laps around the unit while catching riding on our chemo 'pole', doing OT, playroom on the unit, more laps, and more speech :)

Plenty of time in this round still for hair loss, but it's amazing to me that Ruby's hair seems to be filling in a little from when she lost so much during Round 2. It got so so thin and some of it short, but now there seems to be more short hairs in the place of some of the bald spots that were there just weeks ago. Crazy how her body still has the ability to grow with such strong medication in her system!

The team still agrees that she will be finished mid-afternoon on Sunday, and discharged shortly after. (Yes, I ask the SAME question every day to make sure it's the same answer!) Once home, she'll have those blood draws by the home nurse, giving us results within 24 hours so that we know if we need to keep her home from school/church (low ANC) or bring her to the clinic for a transfusion (low platelets or hemoglobin). The tricky part will be both Thanksgiving and Christmas. As the schedule stands now, she will not be receiving chemo for either, but her counts should be at their lowest those weeks. That means the random fever would mean an admission. Prayers for healthy healthy Ruby anti-germs those weeks, please!!

It's not from this visit, but I love this picture, and it's of Ruby in the hospital, so I'm including it.

Rest When We Need It

Exodus 33:14 My presence will go with you, and I will give you rest.

Such rest. We are only in day two (the second of four chemo bags was just started), but already, this is such a non-event. Ruby is a little tired, and a little more picky about food today, but she is still smiling, playing, eating, and loving like a champ.

Rounds today were simple, as they usually are. Ruby's chemo is a continuous drip for 96-hours, which means she will be done on Sunday afternoon. Her team confirmed today that she can go home then. She will have blood draws at home 2-3 times each week while at home, and when we receive those results, there is always a chance that she needs a transfusion. In that event, she will have to go to the Aflac Clinic for 4-5 hours. And if/when she spikes a fever, she has to go to the clinic or ER immediately for antibiotics. In that case, if her ANC is under 500, she will have to be admitted also. So life may be a bit of another kind of crazy some weeks....I foresee plenty of random afternoons for the older kids, but it still means us all sleeping under the same roof most of the time.

He gives us rest. This stay is still five days. Five days away from the kids and Lehr, five days hooked up to a machine and a pole, five days away from friends and outside and all of the things Ruby loves. But this stay feels like a huge rest because it is only five days. We had two great weeks home, and part of what made that time so relaxing was the lack of anxiety over entering the hospital for another month. Rest for my soul.

(*I did not bring my camera to the hospital for this round....five days hardly warrants a suitcase, let alone a camera. :) So no cute Ruby pictures except from my less-than-worthy phone photos posted on Facebook.)

Another Change Up

Just before I picked Ruby up from school this morning, a schedule nurse called me to let me know that Ruby's counts (from her home-nurse blood draw yesterday morning) were not registering high enough to start chemo tomorrow. So we are backing up Round 3 another week; Ruby will go in for her lumbar puncture and chemo start next Wednesday.

For those keeping track, that makes two weeks total delay for round three, since originally she would have started last Wednesday, but we didn't even leave the hospital until that day.

I can't say that I'm disappointed by this. I know in the big picture it puts us another week involved in the leukemia and chemo process, but when you get granted an unexpected week to be at home with the entire family, it's hard to see anything but positive.

Home

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 thinning...it'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.

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.

Flexibility

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.

Oye.

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.

Love

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 that....now 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.)

Seriously.

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.

Bliss

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.

Pop Goes the Bubble

Isaiah 40:31   But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Here is yet another opportunity for me to not be weary or faint….here is another chance I have to trust Him to take care of my family.

Ruby is doing amazingly well still. Her blood counts are all good, she’s not running any fevers, she’s been off of nausea medicine for several days and hasn’t shown any signs of needing it, and her energy is spot on with what it was before we started chemo. Outside of the fact that we are in the hospital, it’s like there is nothing out of the ordinary going on with her.

Because of this clean bill of health, rounds for Ruby each morning are very quick and uneventful. I decided to rock the boat this morning and ask about future rounds, since this one has been so easy going. Our doctor told me that next round will be some (all?) of the same chemo meds as this one, including the 4-day drip, but they will be stronger and she will feel it more. Because of the increased intensity (here’s the mic drop), Ruby will be in the hospital for another 21 days.

Do not be weary…..do not be weary…..

The stay in the hospital is no picnic, but it’s manageable, and Ruby and I still get outside, get some speech and OT work done, and even see friends a few days a week. Until this point it was just a goal I had in mind and we were powering through, looking very forward to October. 

Now I know we can manage that for another month. But our family being split in two has been hard for me, even for just the 10 days so far. The things that we’ve built our family on, dinner together each night, bedtime reading, after school check in with homework/sports/goings on….I am missing these things a lot. On top of that, October is a fun month for me and the kids…we do several Halloween and fall type activities: crafts, fun foods, pumpkin patch trips, scarecrow sightings, parades...

And of course this plays into Ruby’s school. I don’t know how it will work because the longer she’s away, the less likely it is that she can hop back into her class. And while she’s rocking and rolling with speech and some fine motor things (because I get to work on it so many times each day), her fatigue for this next round will affect her energy, which could affect her willingness and/or ability to practice those skills.

I know my family is strong, I know this is a short phase for the long life Ruby has ahead of her, I know He will see us through. But this was a deflating moment.

Chemo Free!

Lehr stayed with Ruby last night so that I could go to a worship service at our church with Eli and Maddux. They got to sing in a children's choir...this may have been their first time? As expected, Eli followed directions at rehearsal and stood still on stage. That boy is showing me maturity so much more these days...sometimes I don't even recognize him!

Maddux....well, she made it through. Once again, my girl struggles to not get pulled into less responsible choices. After the night was over and she and I were discussing one area during the service that she was struggling (chatting and being a distraction during the part of the service that she was not on stage), she told me, "But I didn't want to sit next to them" (referring to the girls she chose to sit with, which are friends - meaning a constant temptation for Maddux). I reminded her that she actually begged me to be able to sit with them, even though I reminded her that it may not be a good choice. In the end we had a good talk about the best decision is often the one you make before you're in a position to make the good or bad decisions we usually think of. (AKA - Don't put yourself in the position in the first place!)

Ruby had a good night and woke up with an appetite. Lehr said she ate bowls (bowlS) of cereal for breakfast and then the two of them went on a few walks away from the Aflac unit. (Now that she's off of chemo, she can leave the immediate area!) Ruby had a good lunch as well, followed by a killer nap. I switched out with him just before 4PM. Ruby woke up a little groggy and snuggly, but after dinner (not such a good success rate), she pepped up.

After dinner we were playing on the floor with puzzles when I noticed a pile of water. Upon further inspection, Ruby's IV had come unhooked. I have no idea how it happened since we were just sitting (compared to all of the times I've stressed about it happening when she's rolling around in bed or running away for the two seconds I put her feet to the ground!). It was no problem; the nurse came in and said she'd re-run a line in a few minutes. As soon as she was out of the door I got Ruby up and had her walk and 'jump' and do all of the things I haven't let her do all week. It felt like a breath of fresh air for 4-5 minutes!

Once we were hooked up again, I took her across the hall to the kids' playroom on our floor. She and I stacked blocks and played with Mr. Potato Head for about an hour before coming back and getting dressed for bed. The nurse came in to get her vitals just before 8 and I asked about the evening's oral meds. NONE!! The only one she may need is Zofran, but we are going to just wait and see if she needs it. YAY!!

Sunday

Psalm 130:5   I wait for the LORD, my soul does wait, and in His word do I hope.

Last night's sleep was a little interrupted: Ruby's IV bag ran out at 3AM and caused the alarms to go off, which woke us both up. I finally got her down to sleep again by 4....just in time for the 4AM vitals and blood draw. She normally sleeps through that, but she was not deep into her sleep again, so it was close to 5 before either of us saw any more sleep. The good news is, she slept until after 7AM.

Today was more books, more blocks, more speech therapy (I've got nothing but time!), and more oral meds. That part just sucks. Ruby has had to take several medicines (chemo, Zofran, Bactrim...) orally each day. Sometimes it's twice a day, but today was three times. In the beginning, it was mildly bothersome to her, but we are at the point now that she sees the nurse with the oral syringe and starts crying and says 'nooo'. Yup....I get to hold her down while the meds are given to her. That is always fun. I really really really don't like that part.

Ruby drank a bunch more water today than she has been. She ate plenty of calories too, though she is still struggling to enjoy the same foods she used to. Today's success included peanut butter, crackers, mashed potatoes, a little bit of meatloaf, and raspberries.

5PM marked the end of Ruby's IV chemo for this round...hip hip hooray!! She will still have blood draws each morning so we can watch her counts; her white blood cell count should drop over the next week, bottoming out on day 10 (from the beginning of chemo). So she has one less thing she is hooked up to, but unfortunately she is still hooked up to a tube. Ruby will receive fluids through the night and then 'more', as the doctor put it today. I think that means the same thing as 'we'll see'. I will be pushing for her to have some time off of the IV over the next few days. I know she needs it and it will make her feel better, but my girl needs to walk. She needs to explore. She needs to play without me telling her 'no no...don't move too fast/too far/too high/too low'.

This last week has not been as hard as I imagined, mainly because Ruby is still healthy. Her appetite is odd, and she has had a few more naps than usual (and then there is the roid-rage), but in general she is still the same. The hardest part has been the anxiety over her chemo and IV lines. She is hooked up via her port and I'm constantly stressing out over her pulling too far away from it or rolling one too many times in bed, or doing anything that could compromise the port or her bag of chemo. Something as simple as me brushing my teeth requires me to put her inside of her crib and try to coax her to just sit still because if she jumps around or moves around, the tubes get all tangled and short.

Lehr is with Ruby tonight and will be most of tomorrow. That girl loves her Daddy, and as not ideal as the circumstances are, I am so grateful for this one-on-one time they are getting. I am with Ruby so much during the week when the kids are at school, and during therapy and at Gigi's, but Lehr doesn't get to hang out with just her that often. That has been a gift, for sure.

Boring

 Acts 24:3   In every way and everywhere we accept this with all gratitude. 

Today was fairly uneventful, and we are so grateful for that! Last night Lehr and I tagged off so that I could be home with the big kids and he could hang with Ruby. The two of them had a guest, played hard, and finally got to bed around 9PM. Lehr even said that she took her evening oral meds without too much fuss.

This morning Ruby showed Lehr how much she does NOT enjoy the oral doses of chemo, Zofran and something else (I think it's an antibiotic right now). Vitals have been good all day.....one change in blood pressure for a minute, but no real cause for concern. Lunch was a milkshake and spoonfuls of peanut butter. (Did I mention that Daddy was in charge?) After a nap, Maddux and I came to the hospital and Lehr and I switched out again.

While Maddux was here, she gave the nurse (one that Lehr and I both like a lot) a thank you card and a bag of candy to share with the others. She also got additional beads for the Beads of Courage that she and I started for Ruby earlier today. Love that girl (even when she frustrates me to no end).

Ruby is definitely showing signs of irritation/outbursts which are likely due to the steroid component of her treatment. She will be fine and playing or eating one moment and then get very snippy and aggressively push you away the next (which is very unlike her). She ate an ok dinner with some variety (banana, squeeze food veggies, mac n cheese, water), and then she and I played until it was oral-chemo time again.

Eating has been a challenge, which we expected since patients often lose their appetite while on chemo. I have stocked up on the pureed veggie squeeze foods to start each meal with, just to make sure she's getting good vitamins. We can usually rely on some yogurt or crackers at each meal, but that's not going to keep her healthy through this, so baby food it is!

The oral meds are a problem..... I HATE how sad/mad she gets when it's time to take them. We seriously have to lie her back and hold her down; not fun! The good news is, tomorrow she has two more doses of the oral chemo and then she's done for this treatment. Oh yeah, and her last bag of chemo for this treatment was hung at 5PM so tonight is the LAST night she will have to sleep hooked up to all of that stuff!! I know she will likely need a line for fluids at some point(s) during the rest of her stay, but it will not be a 24/7 bag and it will only be ONE line instead of the three tubes she has now.

Today I am so grateful...grateful that Ruby's last bag is hanging, grateful that I got to spend almost 24 hours with Eli and Maddux, grateful that Ruby has an amazing dad that takes her out for more walks even though she's hooked up to stuff (and gets her milkshakes), grateful that God is growing me already through this so much that I feel at home in the hospital already (that's me 'swimming'!), grateful that this process, though only 5 days long so far, has not seemed so hard yet, thanks in big part to the many many friends who have jumped in and helped, grateful for the sweet times I've had with Ruby while in the hospital, grateful that we have a God that makes all things good...even cancer and chemo.

Smooth Sailing

Matthew 12:21 And His name will be the hope of all the world. 

Ruby slept well through the night; she didn't make a peep until 6:30 and even then, it was just her standing up in her crib. I picked her up and brought her to the chair to sit with me in the dark and she fell right back asleep as soon as her head hit my chest. She slept, even though her body was a bit restless, until about 8AM.

Ruby refused to eat anything except homemade protein bars for breakfast, but she was in good spirits otherwise. She definitely does not like taking oral meds right now, which is quite unfortunate because several times a day she has to take an anti-nausea, chemo and one other prescription. Those are not fun times.

We had less activity in the room, which meant we got less fatigued (only one shorter nap today). We did see the chaplain, a friend, and the doctors on rounds. Ruby's chest is sounding clear even though she has a little bit of congestion (sounds like she just needs to cough to clear her throat). No fevers so far and based on her blood work, if she did have a fever, it would likely be due to the chemo rather than infection. (That is good news.)

Just to make things interesting, as Ruby napped, I got a call from the school nurse and Eli was in there with a headache and 100 fever. He needed to be picked up. I was unable and Lehr was in a meeting, but of course our amazing friends jumped right on it and got him, brought him to their home(s) and gave him some Motrin. He was fine the rest of the night, but a little tired. Hoping it is allergies and nothing more serious.

Just before dinner, Lehr came to the hospital to let me go home and be with the kids for the night. As good as it felt to leave, it feels very strange to be home without both Lehr and Ruby. Her room looks so .....quiet. It was good to be home with Maddux and Eli. Friends delivered a DELISH dinner, and we discovered packages of TP, apples and oranges on our front porch. The acts of kindness fairy(s) visited us, I guess!!

Lehr said she was picky at dinner again, even turning down the ice cream he got for her. Her tastes are definitely changing, as is her love of strangers. As happy as she always is to see someone new, the constant barrage of nurses with meds for her is making her a bit clingy when they come in sometimes.

When I keep the door open in Ruby's room, and the few times I've walked around the halls on the Aflac unit, I get to see other kids fighting their own battles. Most are without hair and I can tell that this is not their first rodeo...they just have a different presence about them. They are sauntering down the hall, or playing games in their rooms filled with laughter, or riding around the unit in battery powered cars. Others are in the deep end of chemo fatigue and frailty. They are being pushed in wheelchairs, or pulled in wagons. Regardless of which category they are in, they all seem to have hope. God is here and His mighty work is being done. Because my time outside of the room has been so limited by Ruby's tubes and wires, I have not gotten to meet anyone, but I am anxious to hear how God is working in their lives.

Day 1

Be completely humble and gentle; be patient, bearing with one another in love. Ephesians 4:2

My God is working on my flexibility and patience. He knows that I have much room to grow in the area of not being in control and knowing exactly what is going on. The last 48 hours have been a base-level test for me :)

So 'today' started yesterday. We planned on a full day of pre-op appointments yesterday, culminating in her receiving platelets through an IV to get her numbers up prior to surgery, after which we would go home and enjoy one last sleep as a family under the same roof. However, around 5PM they told us that the blood bank did not have any of her type, so they were having to get some from elsewhere. This meant that she would have to be admitted to the hospital so they could administer the IV when the platelets arrived (likely early evening). Around 9PM they came and hooked her up to fluids since the platelets were still not there (coming from out of state). She fell asleep and slept as well as can be expected with the barrage of activity in and out of the room all night.

Somewhere around 5AM, the nurses came in and did more vitals and flushing of her IV, and then started her on her first round of platelets. They were able to push them in about 30 minutes; 15 minutes later they drew blood to test her levels. (If her levels were not high enough, we would have to do another round of platelets, but we did not have much - time before surgery or bagged platelets - to spare.) Her platelet numbers were high enough, so surgery was still on the schedule for the day. For some reason, they did come back an hour later and start to give more platelets, but then the bag started to leak, so they took it away. During that time, the nurse practitioner for the lumbar puncture visited us and assured us that her numbers were great and she wouldn't need any more platelets before surgery.

Surgery was scheduled for 11AM and they called us back just after that time. Unfortunately, it took another hour for the OR and surgeon to be ready, so Ruby had to hang tight a little longer. Once they took her back, the surgery took an hour, and she was back to us about two hours later, snoring, snuggling, and with a tube coming out of her chest. (The surgery was to place her port/central line. This is how she will receive most of her chemo and also how they will take blood for testing and administer fluids, as needed. While she was under they also performed a lumbar puncture/spinal tap. This was to pull some fluid from her spine to test for leukemia cells there and also to put the first dose of chemo for her spine and brain into her system.)

About an hour after Ruby got back to us, she woke up and returned to being Ruby quickly. She ate a TON and then an hour or so later started to fade again. This was a BIG day for her. At 5PM, chemo via IV was started. Around this time Ruby started to show some signs of pain when we moved around a little, but it helped to have all of her other IVs taken out (she had two others in place from earlier in the day). Ruby rallied until 7PM and then couldn't keep her eyes open another second.

We're in the deep end now. Somewhere around the beginning of the platelet appointment yesterday, this new world we would be living in started to lure me into the water. It's not all bad, but still scary if I let it be. My baby coming back to me with six tubes connected to her, including the tubes implanted in her chest, and the first round of chemo into her spine during surgery pulled us the rest of the way in.

I think part of the ominous feel of this part is the harsh reality that we are actively making her sick. Yesterday morning Ruby was running around, drinking her morning smoothie and getting into trouble all over the house. This last weekend, Ruby was digging in the garden and pushing herself on her bike in the driveway. She wasn't sick, she wasn't fatigued, she wasn't slowed down. The very potent drug that I am watching drip into her body while she sleeps will suck some of that life out of her as long as it's in her system. That is not an easy pill to swallow.

Good news came from the leukemia fellow we've seen most often during our journey. She came to visit us just before chemo started today. She said that since Ruby's level of leukemia cells in her bone marrow was low enough, she will not have to have the bone marrow biopsy normally planned for day 14 of this first treatment. (Typically that biopsy is done to determine if the leukemia is at a high enough level to warrant starting the second round of chemo early. Ruby's beginning level is already under that threshhold.)

We are continually showered with texts, phone calls, cards, prayers, meals, childcare for Eli & Maddux, posts on Facebook...the love is comforting and so appreciated. We are rich in community!