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!

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!

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.

Happy Surprise

Psalm 66:5  Come and see what God has done, how awesome His works in man's behalf!

As optimistic as Ruby's team was on Wednesday about her going home Friday, or maybe Saturday, we watched that possibility fade quickly each day as her blood was tested and came back with low numbers. As of yesterday when I left the hospital, I was feeling that Tuesday would be our best case scenario.. So imagine my surprise when I left church at 11AM to find a Facebook post from Lehr indicating Ruby's doctor gave her permission to go home this afternoon!

I immediately called just as the doctor came back into the room, so Lehr put me on speaker phone so that I could hear their discussion and ask any questions I had. Ruby's numbers are going up, but are still not even in the hundreds. However, this 'precursor' level they test for indicates that she is right on the cusp. After I hung up I quickly dropped the rest of the family at home and high-tailed it to the hospital.

When I got there, Ruby was moving around pretty good, so I ordered lunch to settle her down. With nap time approaching, i wasn't sure how everything would play out with our discharge. Lehr had packed everything up, so all we had to do was have Ruby's dressing changed, get a tutorial on how to do that ourselves and how to flush the line.

Yikes. I've watched them change her dressing three times, but thinking about doing it myself freaks me out. (Everything has to be insanely sterile!) And the line flush and/or hep lock I've seen no less than 25 times. But that is another thing that just freaks me out. We have a home care nurse coming out a few times a week to do these things, but there is always an off-chance we have to do it ourselves. My personal prayer request this week is that I never have to do that :)

The kids and grandparents were crazy excited to have Ruby back. And it was SO cool to watch her walk around and rediscover everything at home. When Lehr and I first arrived, Ruby went right down for a nap, so she didn't even notice her surroundings, but once she got up, everything was fair game.

To say my cup runneth over is an understatement right now. All five of us sleeping under the same roof...it doesn't get much better than that!

Tapping My Fingers

Psalm 33:20  Our soul waits for the LORD; He is our help and our shield. 

When the Nurse Practitioner started talking about Ruby maybe going home, she mentioned Friday. Of course my heart did a little dance, but I knew better than to put too much stock in that. Unfortunately each day her ANC was not registering high enough. During rounds on Friday, Ruby's ANC was still 2-digit (they want it 3-digit, trending up, for at least two days). Also, her hemoglobin was down, so she received blood during naptime. The team was still preparing everything for a weekend departure, even though that seemed highly unlikely to me.

Lehr stayed with Ruby last night, and he spent the day with her today. Grandpa Jim and Eli and I visited for lunch, and Ruby ran all over the golf course and the Zone, until she crashed for a nap. Lehr said that just before we got there, Ruby was playing in the AFLAC playroom and fell and bumped her upper lip. She got a cut on her lip/gum area and it took a good 30 minutes to stop bleeding. One of Ruby's doctors was right there, so she was able to keep an eye on it. Also, Lehr said he noticed some of Ruby's hair falling out. I've been watching carefully when I've brushed and fixed her hair each day, but nothing so far; I assumed that meant it wouldn't happen until she started the next round.

As of this morning, Ruby's ANC is STILL 2-digits. At this point we are just hoping to go home on Tuesday, as originally planned. And the finger tapping continues. Even when you tell yourself not to get your hopes up, it's hard when it comes to your family. During my time at home today, I spent a significant portion in the yard, tending and planting and whatnot. Ruby loves to be out there with me and it made me sad to realize how long it's been since she's seen her yard.

The Next Tunnel

1 Peter 5:7  Cast all your anxiety on him because he cares for you.

Just before dinner last night, a dentist came in to see Ruby. Since many of the kids that are on the AFLAC unit spend significant time here, there is a dentist onsite that comes and checks in with the patients, and you can even keep them as your regular dentist when you leave. Very cool. Ruby got a clean bill of health; her teeth look great thanks to at least 15 minutes of her brushing with her electric toothbrush every morning and night :)
Last night was uneventful. Everyone came to the hospital for dinner and then a Songs for Kids concert downstairs. Grandma Cathie stayed the night with Ruby and they both did a great job with their night time meds. Ruby is getting better with the oral meds; she fusses less (even though she spits like a camel), but it's still not my preferred pastime. The good news is that her bloodwork shows that she is getting enough in each time to do the job.

Rounds today were similar to yesterday. Ruby's ANC was lower than yesterday, dipping back into the 2-digit area, but the team was not discouraged. They say that her numbers could boost up to 400 tomorrow easily, and once we have a 3-digit trend, she will be well on her way to 1000. They are still hoping to release her this weekend. It's weird to talk about home care nurses and whatnot...it feels like forever since Ruby has been home!

The plan right now is home for just over a week, and then a return on 9/30. We will do a bone marrow biopsy (her last levels were only 7%) and lumbar puncture again (her last one was negative). Then she will be admitted for her second round of chemo and second 21-day stay. This one will likely affect her more, as the chemo is more intense. Also, we will be in the midst of flu season, so visitors (including her siblings) will be less.

So so so excited for her return, and because her return will be short, I am trying to fit as much 'normal' into that time as possible. The biggest 'wa-wa' is that Ruby's home time coincides with our school's fall break. That means Ruby will possibly miss any chance to see her classmates. (She *may* have a chance to attend once the day before she goes back in.) But outside of that, she will have some therapy sessions, some playground time, and as much not-hooked-up-to-tubes-and-a-pole as she can stand!

The reason for the verse of the day? My anxiety. As awesome as this light at the end of the tunnel is, I know the next tunnel is right behind it, and that tunnel seems longer to me. It will include our favorite fall month, as whined about mentioned in a previous post, including the Buddy Walk and the Little 5 Points parade. And the timing of it sets Ruby up to return for round three during Halloween. She should only be in for a week or less that time, but that week includes 10/31. These things are tiny, minute details compared to the bigger picture, and maybe that's why I focus on them (because it's easier to distract that way).

Songs for Kids

If you haven't heard of it, Songs for Kids is a cool organization that provides music (entertainment, therapy, whatever you want to call it) for kids that are in the hospital. They come to CHOA/SR twice a week for a morning jam session; Ruby and I have loved this.

Tonight they had a 'concert' in the Zone, and the whole family got to come. The guy singing tonight sang all kinds of fun songs, appealing to both the big kids in the room and Ruby. Of course Ruby was front and center the whole time, swaying, shaking a noise maker, and singing. Near the end, Maddux got over her silliness and sang with the guy singing, both "Happy" and "Twinkle Twinkle".

Good stuff.....Ruby is going to expect a lot of daily entertainment once we return home!

Say What?

1 Corinthians 1:4   I thank my God always on your behalf,  for the grace of God which is given you by Jesus Christ.

Ruby had a very quiet night with no change in temperature. She remains on antibiotics every 8 hours, but just the Zocyn. As of this mornings rounds, she was 24+ hours since her last dose of Tylenol, and her blood counts continue to improve. Her ANC was at 20 yesterday, but today was 130. We need that number to get above 500 for her to get off of antibiotics, and between 500-1000 to go home. The nurse practitioner this morning was very optimistic that Ruby will be ready to go home by the weekend.

Let me pause for great celebration (because when she said that, it was all I could do to not jump up and down).

The at-home-care person assigned to us two weeks ago when we arrived came to visit me and let me know she already had the ball rolling for home visits starting next week (blood draws, dressing changes, etc.). I'm crazy excited, but I also know things change quickly, so I know nothing is for sure until it actually happens.

(But I'm still doing the happy dance.)

Cape Day Atlanta

Today was #CapeDayATL. People all over the city wore superhero capes in honor of the little heroes fighting big battles. Since we are in the hospital, that was celebrated by CHOA big time. And since Ruby is fighting cancer, it's celebrated even more.

Maddux and Eli received gold capes (recognizing childhood cancer month) from the counselor at school; she obviously caught wind of what was going on with us and also had lunch with Maddux on Monday. The big kids wore them to school today in honor of Ruby, Emery (a first grader at their school who fought congenital heart stuff during her short life), and all of the other superhero kids.

This afternoon my parents brought the kids here to the hosptial to meet with the Family Life counselor so she could go over some of the medical stuff with them (in case we missed anything). She said they did really well and seem to understand everything. The three kids got to play for about 20 minutes before soccer practice, which made Ruby's day.

Oh What a Night

Deuteronomy 31:6   Be strong and courageous. Do not be afraid or terrified, for the Lord your God goes with you; he will never leave you nor forsake you.

Ruby had another low fever around dinner time last night, which the nurse was pretty confident would prove to be 'the one', but then it started to drop before bed. (*'The one' fever we are looking for is one that almost always occurs when Ruby's post-chemo levels are at their lowest - right now - because it is the proverbial 'hump' we have to get over before recovering and being released.) Ruby went to bed around 8:30, but was very restless in her sleep, moving around a bunch in her crib.

Around 10PM, the nurse came in to hook Ruby up to her fluids. We usually do that at bedtime, but they opted to wait last night (maybe waiting for the fever?). So that took some help from me; usually Ruby would sleep right through that, but the restlessness made her easily roused. I had to hold her to get her back to sleep, and then her IV alarm kept going off (I never really figured out why...the nurse fixed it each time).

At the midnight rounds, when I was just settling into bed, Ruby's fever was up high enough that they drew cultures and ordered antibiotics. This woke Ruby again because we also had to give her oral Tylenol. (Just what Ruby loves, especially in the middle of a night with no sleep.) I just held her through all of that until we got the first type of antibiotic in her (Zosyn).

Towards the end of that dose through her IV, I put her back in her bed and went to bed myself. A few minutes later the nurse came in because Ruby's IV alarm was going off signaling the Zosyn was finished. That meant it was time to start the next antibiotic (Vancomycin). I heard the nurse in here for quite a while getting it hooked up, but I eventually dozed off. Then I heard Ruby stand up in her crib and rattle around. I turned to her and told her it was ok and to go back to sleep. She got up and down a few more times and then whimpered. When I got up to hold her, I could smell that she needed a diaper change. I got the supplies and turned the light on just a little so I could see what I was doing. As I was changing her, Ruby was rubbing her face a bunch, as she typically would when woken up from sleep. But her face was all puffed up. As soon as I got the clean diaper on her I paged the nurse and the fun began.

Ruby's nurse called a few other nurses as soon as she saw Ruby. The Vancomycin was stopped immediately and Benadryl was started. Nurses were in and out as they checked the computer and made a call and checked Ruby again and again. They took her blood pressure, pulse ox, and listened to her chest about 100 times. Finally satisfied after her breathing sounded better, only our nurse remained. She had called the doctor and was going to hold off on the antibiotics until further notice. Ruby and I finally got some sleep around 4:30AM. 7AM brought more Tylenol for the fever that had gone back up, and 8:30AM was officially morning.

Ruby didn't want to eat or drink much of anything this morning, but by lunch she ate and drank a little. She was very moody this morning, but that could be the lack of sleep as much as it could be the fever or the reaction. During rounds we discussed where we go from here. The Vancomycin is preferred as it takes care of a large variety of infections. However, Ruby's reaction was severe and not typical. So, for now, she will receive antibiotics every 8 hours (until the fever goes away), and it will only be the Zosyn (doesn't cover as broad of a spectrum). I asked what our plan of attack was for the next round of chemo, as she will need to be protected from that large variety of infection as the chemo progresses. The doc on call assured me there were other options, but Zosyn is our plan for now.

Scary to think how labored Ruby's breathing was, scary to think that I would have slept through it had she not filled her diaper at that moment, scary to think a medicine that should show a side affect that severe quickly would wait until after the nurse watched and waited (20 minutes) to react. But it was not scary in that moment...God kept Mama Bear calm and awake enough to help, and He kept Ruby strong and healthy enough to withstand the craziness of the night.

Let's Add Something Else To Our Plates, Shall We?

Ruby had a great night with Grandpa Jim; she even slept until 8! I arrived just after that, but he and Grandma Cathie hung out for a while to eat breakfast and play with Ruby. Then she and I made our way to the gardens before working on speech. Rounds were very boring; Ruby is fine as fine could be. Her temporary fevers over the weekend didn't even warrant antibiotics, and she received platelets yesterday, which bumped her numbers up into the very good range.

Here's my newest challenge: potty training. Not something I would choose to do during the journey, but she's in the zone. I planned it once school started; the potty seat is ready to go at the house. It never happened during the summer because the older kids were too much of a distraction for me, but then we got a 3-week trip to CHOA, so my plans had to change. I was thinking to just wait until after our hospital stay, but then we got another 3-week trip added, pushing our date with the potty back at least another month, AND, she gets the diaper supplies for me the second she starts to go (the solid variety). She is very aware of what's going on, which means I need to act.

But how...

Here are my roadblocks:

• she needs to stay so very clean to avoid any infection, and doesn't get daily baths (just a sponge bath)
• our room needs to stay oh so clean, as we live there
• she is on fluids all night, so even first thing in the morning, she is more 'full' than usual, and I'm not sure that it's reasonable to expect that she could control her bladder at that time
• all of the meds she is on give her diarrhea

Aren't you so glad you decided to read my update today?!?!

Hopefully someone will read it that also had a child in the hospital around the same time and has some advice. Otherwise, I just lost a lot of readers.

You're There ALL of The Time?

Matthew 6:8  For your Father knows what you need before you ask Him.

Yes, yes, and yes. (To the verse, not the title of this post.)

Ruby has been in the hospital for 13 nights; today is her 14th day here. I have been here the majority of those nights, and I've only not been here for one day (yesterday). Lehr has been amazing and has relieved me for a few nights here and there, and comes to see her/help me very often. If it were up to him, he'd check in Friday afternoon and stay until Monday morning, but you know Mama Bear can't stay away that long.

So the questions I get most often from friends and family are regarding what Ruby's treatment at the hospital means. When we say she's in the hospital for 21 days, that means she checked in on September 1st, and the earliest they will release her is September 22 (she came in one day early). No visits home, no trips to the park, no rides in the car...she is living at the hospital, never leaving the hospital grounds. And because she's two, that means a family member is with her at all times, 24/7, sleeping on a couch, feeding her meals, playing with her all day...in the hospital. So if I'm not here, it's because Lehr came to the hospital and tagged me out, and vice versa.

*(We can have some other people stay with Ruby for short windows of time, but it's always a delicate dance of if her numbers are good, or if anything 'big' will happen when we're gone. A friend planned to relieve me for a few hours on Saturday, but at the last minute Ruby spiked a fever, so that was out. And then yesterday she needed platelets, so it almost didn't happen for my dad to stay with her so that Lehr could come home.)

The last two weeks have not been bad. Not as bad as I may have imagined it. I really embraced our temporary home; I think of it as Ruby and my dorm room (since we sleep, eat, play, work, brush teeth in the same space). But last week's news that we would be repeating this stay was a blow to that positive attitude. That news took the wind out of my "We can do this" sails for the remainder of that day. Then Friday was rough. R.O.U.G.H. for Mama Bear. Ruby had to get hemoglobin and platelets and the way that played out was very frustrating to me. It may not have been only due to the logistics...I was probably still dealing with the Thursday news too. Needless to say, by Saturday afternoon, I was struggling to find the joy that came so easily a few days earlier.

But God knows what we need, and boy did He provide. After Eli's soccer game on Saturday afternoon, Lehr and the kids and Grandma and Grandpa came to the hospital for dinner. We all ate together which was so good for my soul, and I know Ruby got a lift out of it too. Then we played in an outdoor space for a while before Aunt Liz and Aunt Megan came. Before bedtime, we all left, including me. (Lehr stayed with Ruby.) And I stayed away from the hospital until first thing this morning.

That's 36 hours.

Doesn't sound like much to me, but it felt like a week or more. I slept in my own bed, went to church, played in the backyard with the kids, did dishes in a real sink, worked out with my friends in the wee hours of the morning, and (thanks to Grandpa) got a quick dinner date with Lehr. That was HUGE. Grandpa stayed with Ruby last night so Lehr got to come home too. We haven't been home, or anywhere other than the hospital as we pass the baton, at the same time in two weeks. It was so great to see him and actually get to talk to him.

So those 36 hours served as a great reminder that God knows what is best, even when we don't know to ask or look for it.

Just A Spoonful of Sugar Helps the Medicine Go Down...

Ruby had Daddy keeping her company last night which meant trying the oral meds with a dose of ice cream. It worked out really well, and why wouldn't it? Mr. Malone also paid a visit, making Ruby's Friday night a fun one.

This morning Lehr and Ruby explored a part of the hospital we hadn't previously made it to yet: The Zone outdoors. There is a small basketball court and little putting green....Ruby spent a lot of time out there before I arrived for lunch.

After a great lunch with me, Ruby's vitals showed her first fever. it wasn't very high, but she tends to run a little cool anyway, so the change was noteworthy. She fell asleep easily for a nap and we checked her temp a few more times while she slept. It went up just a little and hung out there for an hour or so. She woke up and seemed fine, but we hung out in the room so that we could keep a close eye on her temperature. Two doctors came and checked her out, but unless the fever went higher, felt comfortable riding it out and not giving her antibiotics. Thankfully, about three hours after the fever appeared, it disappeared. And just in time for Eli, Maddux, Daddy, Grandma & Grandpa to come to the hospital for dinner.

After we ate, Ruby took us all on a tour of the newly discovered outdoor space. So much fun! We left right around the same time that Aunt Liz and Aunt Megan showed up. This girl is never short on visitors!

Unfortunately, the night time meds did not go so smoothly. Ruby did a lot of screaming and threw the ice cream bowl. All of these oral medications have definitely been the hardest part of the process so far...holding Ruby down while they basically force fed to her is no picnic.

Patience With The Process

Romans 12:12  Be joyful in hope, patient in affliction, faithful in prayer.

Ruby's numbers were expected to start to go down today. One way is that her white blood cells count should drop as a result of the chemo. We actually want that because it means the cancer cells are going away. (Along with the good ones too, of course.) Another way they drop is hemoglobin (red blood cells) and platelets. These two did drop this morning, so she is about to be hooked up for a transfusion. The platelets will take about 30 minutes to go in and the blood will take about 3 hours. So we will be hooked to tubes again.

Once Ruby gets to a point where she can be at home, we will still go to the clinic for weekly blood tests to stay on top of this. From what we've been told though, the number they watch more closely once she's out is her ANC (Absolute Neutrophil Count). This gives the doctors a measure of her body's ability to fight infection. There isn't a magic number it needs to be, but it needs to be trending in the right direction at specific points in her treatment. On the other hand, if it is low, she will have to be hospitalized to keep her protected from contracting something and not being able to fight it off quickly enough.

Ruby is still Ruby Ruby Ruby. A little more fatigued today, but not terribly noticeable. She did have the some of the KSU girls soccer team visit her today, as well as a volunteer who read her 3 or 4 books. And then Carissa brought us lunch and played with her. Before her nap, we toured the garden and fountain again (we do it every morning), and we played peek-a-boo around a column inside the hospital for a good ten minutes, delighting all of the staff that walked by her as she laughed each time she or I scared each other.

So for now, the hope is two long stays (21 days each) up front, then 5-7 days for the remaining each of the remaining four rounds of chemo. It sounds like Ruby will have about a week home between rounds 1 & 2, so that is good news. Ideally, we start a new round every 28 days, but that depends on if her blood counts have recovered enough. If they haven't, we have to wait, and maybe transfuse, before beginning.

Send In The Clowns

Ruby was just walking to her room for a nap today when the Aflac doors opened and two clowns walked in.

No really.

Two amazing clown ministry clowns walked in and entertained my girl for the better part of 20 minutes. Bubbles, juggling, a guitar, a harmonica, smaller bubbles, spoons, red noses, tiny bubbles.... It was so cool.

She couldn't get enough.