Wednesday, September 30, 2015

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.

Tuesday, September 29, 2015

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.

Monday, September 28, 2015

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.

Sunday, September 20, 2015

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!

Saturday, September 19, 2015

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.

Thursday, September 17, 2015

Then 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).

Wednesday, September 16, 2015

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.)

Tuesday, September 15, 2015

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 myu parents brought the kids here to the hsoptial 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.

Monday, September 14, 2015

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.

Saturday, September 12, 2015

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.

Friday, September 11, 2015

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.

Thursday, September 10, 2015

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.

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.

Wednesday, September 09, 2015

More of the Same

Isaiah 40:28  Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.

Today was much of the same for Ruby, starting with a very decent breakfast which she mostly fed herself (she is enjoying holding the spoon out for me too). We took our oral meds and then got unhooked from the IV. Ruby and I went to the fountain, to the playroom, to the other playroom, and to the fishtank all before rounds. Ruby's team had nothing new for us: Ruby's numbers are still looking great, as are all of her vitals (checked every 4 hours, around the clock). She is still ok'ed to be on fluids only at night, and she is still not showing any need for Zofran. That, combined with her current energy levels, may mean she makes it through this first round of chemo without any vomiting or fatigue....we'll take it!

Around lunchtime, Grandma Cathie and Grandpa Jim came for a visit. Ruby had a great time running them all around the hospital. Then Grandma stayed while Ruby napped so that Lehr and I could meet with the social worker (mainly to work on Katie Beckett) and then attend a new diagnosis orientation/training with the nurse manager. So much information...so so much.

Lehr requested to stay with the girl, so I came home to have dinner with the big kids. It was so good to sit next to them for a relaxed meal around our table at home! It's hard not seeing them every afternoon and knowing what is going on in their classes and at school. Eli has a presentation tomorrow that I knew was coming up, but had fallen off of my radar. This boy has prepared well though and is so impressing me with his maturity in the area of school work. Maddux had her first Art Club meeting today and was excited to be back with her art teacher for the extra time.

Tonight I thank God for all of the people who are still tirelessly praying for and caring for our family. Support notes, cards, gifts, emails are still pouring in and we are so very humbled by it all. Thank you is simply not enough.

Tuesday, September 08, 2015

One Week

Psalm 27:14  Wait for the LORD; be strong and take heart and wait for the LORD.

Ruby woke up at 7:15 in a great mood. We ate some cereal (yay!) and then I asked the nurse about Ruby coming off of the IV for a bit each day. She said she'd check into it and low and behold, we could be free!! Ruby did not have to take Zofran (or anything else) orally this morning, so that was another major plus.

After cleaning up, Ruby and I went downstairs to explore. We tried to check out 'The Zone" play area, but it wasn't open until 10, so we opted for the garden instead. Ruby had a blast walking all around the fountains, pointing out the water and everything else. Around 10:30 we came back to our room to have a quick snack (including me making her drink water before every cracker) before the Songs for Kids music hour. So much fun!  (Seriously, it is amazing the amount of stuff they have going on at the hospital during the week for these kids!) There was only one other child in there when we started, which was great because Ruby tends to be a bit 'in your face' at times and she lost interest in the one child quickly. After about 10 minutes more showed up though, so I had to hold her a little more. But before that, she was dancing and singing...the volunteers were going crazy over her! Halfway through the music, I got a call from the nurse and rounds were starting, so we had to head back up.

During rounds, the team said Ruby's numbers are still looking good. As long as she doesn't appear to be nauseous, she can skip the Zofran (orally), BUT she has to take an anti-fungal med twice/day orally in these after-chemo days. (The day nurse let me give it to Ruby after lunch and it was less dramatic than expected.) Also, as long as her fluid levels are good, she can stay unhooked during the day and just reattach at night. SUCH good news! Lunch was boring: only Fage yogurt and raspberries seemed to appeal to Ruby (it could be worse!), but she did eat a whole container.

After a short nap, Aunt Ju-ju came to visit and brought Ruby a few new distractions. Then we ate dinner (or rather turned our nose up at everything and begged for 'nack' (crackers) instead) and walked downstairs so I could buy a salad. Lehr brought the kids by for a quick visit: Ruby so loves seeing Eli and Maddux! We walked out to the fountain again since Ruby loved it so much this morning. Bedtime was quick and easy (except for the oral meds) tonight as this girl was tuckered out!

Last night was our seventh night in the hospital. The seventh night that our family has been split up so drastically. The seventh night that Ruby has been hooked up to fluids. Seven down, 15 to go. We are waiting patiently.....

Monday, September 07, 2015

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!!

I Don't Know How You Do It

2 Corinthians 9:8  And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.

Before I had Ruby, I said it all of the time: "I don't know how he/she does it." I said it when I saw a parent of a special needs child, I said it when I heard about a spouse with a terminal diagnosis, I said it whenever there was a situation that sounded too hard for me to handle.

Then Ruby came along. And in the hospital that first night (and likely the second), I still said it to myself: "I don't know how to do this. I can't do this. It's not who I am."

Over two years later, people say it to Lehr and I still...sometimes with their words, but often by what they don't say. They say it because it seems like we've figured it out (whatever it is). I don't find this offensive, because I still say or think it when I hear about someone else facing something that scares me. But what I have learned, through Down syndrome and now Leukemia, is that the whole "God doesn't give you anything you can't handle" saying is true.

And false.

It's true that sometimes God puts us on a path that puts us outside of our comfort zone to help grow us. Most people over the age of 30 can look back and see examples of that throughout our lives. Things that we thought we wanted, only to realize it was to our detriment. Things we didn't want only to realize how necessary it was.

But stuff happens in life that challenges us, stuff that is hard, stuff that's 'not fair', even stuff that's not at all of God. I don't think the hard stuff, or even the bad stuff, is always intentionally given to us. I don't think God gives us everything that happens on earth. (But I do know He makes everything work for His glory. I do know He can take the scary stuff and use it in amazing ways.)

And then there is the part of that saying: "...you can't handle". That part is wrong, regardless of if your current situation is of God or not. None of us can handle anything, even the good stuff, on our own. We just can't; we will mess it up because we're human.

I think the more common saying should be "Nothing happens on this earth that God can't handle", because that is something I can say and mean. When people say "I don't know how you do it" to me now, I want to tell them that anyone could do it. Anyone could face anything. Seriously. What we are going through with Ruby is scary on top of scary...two diagnoses that shook me to my core before they happened to me. But we're not scared....not really. Not the way I am when I hear about something happening to someone else. And trust me when I say that my lack of real fear is not because I somehow 'know' how to do this. It's because He does and He is walking us through. One day at a time, baby.

Sunday, September 06, 2015

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.

Saturday, September 05, 2015

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.

Friday, September 04, 2015

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.

Thursday, September 03, 2015

Community

Psalms 133:1  How good and pleasant it is when God’s people live together in unity!

Seriously, I am grateful today more for what God is doing for my older kids than for what He is doing for Ruby today. (And He is very present in Ruby's moment!) Today is the third day that I have not seen my kids in person. The third day in a row that they have gotten off of the bus with a different family and stayed with that family through dinner at least until Lehr could get them and take them home to bed. Even though these three particular families are close friends who happen to be awesome parents and who also have great kids that Eli and Maddux love, three families in three days is a lot of change-up for the kids. But I swear to you that the kids could not be in better hands. They are loving the glimpse into other families' every day lives and dinner routines, and they are being loved loved loved. And when I get a text or a photo at 2:30 each afternoon, my heart swells. How good it is, indeed!!
This is the part that brings me to tears today; part mourning the everyday moments I'm missing with the big kids, part incredibly grateful for what they are receiving by spending time with others. They are going to mature so much through this process and that's both encouraging and scary at the same time. I received an email from one of Maddux's once/week teachers yesterday:  "...Maddux shared with me some recent health challenges for her baby sister....Maddux was very grown up when she told me. She was appreciative of the wonderful neighbors and most excited about her dinner opportunities with different friends..." I also heard from one of my friends that Maddux was a huge help cleaning up after dinner the other night (and with a smile!). So proud of her.
Today started with a bang for Ruby. Monitors indicated *something* with one of Ruby's two lines just before midnight and that resulted in her having to have a complete dressing change around her port site. So bright lights came on, two nurses and I suited up with gloves and medical masks and we went to work. I held Ruby's mask over her face and her hands while the two nurses worked amazingly fast and gentle to remove the large, very sticky adhesive protection layer covering almost half of Ruby's chest. Then they took off the immediate protection around the port and then cleaned for almost a minute. Then we needed to put fresh protection all back on. Ruby cried a little, but stayed so still and brave. Seriously, so brave. The nurses couldn't stop commenting on how awesome she did (they even brought her a new pair of sunglasses for her rock star bravery). By the time they left it was 12:30 and Ruby was awake. She cuddled with me in the chair though and nodded on and off for about an hour before she was asleep enough for me to put her back in her crib without fear of her tangling in her tubes.
This morning she slept through 4AM vitals and blood draw (one benefit of the port is she doesn't even notice when they pull her blood), and then she woke up at 6:30, cheerful and well rested. She and I played and ate breakfast, then she received some oral meds at 9AM. She was not happy with that; I think she was having a flashback to last night's drama. (Normally, she does quite well with meds through an oral syringe.) Somewhere around 10AM, she fell asleep and rocked a 90-minute deep-sleep nap. I did change Ruby into her own clothes....just because I wanted her to feel more at home. I am struggling to feel not scared about her disrupting the port lines; they definitely make me anxious about her every move.
We enjoyed lunch with Carissa, had a visit from a therapy dog (which Ruby LOVED), and got our port lines wrapped to our back. (Ruby tends to sleep on her stomach and I was getting worried about her playing with the lines in front.) Several visitors today included a family life specialist, a social worker (we may finally get approved for Katie Beckett!), her whole team during rounds, a family liaison, and Daddy.

Good news: Ruby will not have a bone marrow biopsy at Day 14, as originally planned. Her numbers are good enough for us to wait until Day 28 (which *should* be after we go home!). So far, Ruby is tolerating chemo well; she is still eating and playing. She is more fatigued, but only slightly. She is not drinking much at all, but with her still being on IV fluids, they are not concerned about that.
And today ended perfectly for Ruby; her whole family had dinner together in her room! Lehr and Eli's soccer practice was cancelled due to weather, so Lehr picked E & M up and brought them over here just in time for the family dinner on the Aflac floor. (Every Thursday night is a free catered meal for families staying in the hospital.) Ruby was SO excited to see her brother and sister! They ate, rode in the wagon (during which Ruby was beside herself with giggles) and played on the floor. For a moment, everything was just as it ever was.

Wednesday, September 02, 2015

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 a little over 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/catheter. 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!