Saturday, October 31, 2015

Halloween

Can't say enough how happy I was to have the hospital stays work out so that Ruby was home for Halloween. Can't say enough how much God made that happen, between Ruby's numbers being a little stubborn to come up, only to shoot up in enough time for us to be home for just the right window to capture Trick-or-Treating.
Lehr and the kids went to Eli's soccer game on Halloween morning. Maddux did a great job watching her sister while Lehr coached the team; she is the best babysitter/big sister! After that, we all met up at the house for lunch and final costume prep. Eli found his Lincoln beard just in time, but Ruby's bat ears went missing randomly. We let Ruby sleep until the last minute before we had to get her into her costume, and the nap paid off for a later night!
Eli dressed up as Abraham Lincoln again, and Maddux ended up some type of witch. (She wanted to be a bird and I was going to make the costume out of felt, but when we went to a costume shop to buy Eli's beard about a month ago, she saw a witch/sorceress type dress and changed her mind.) Ruby was, of course, the bat fairy, using the costume she got at the hospital.

Friends came over to join us, and our neighborhood does a big to-do, so there were friends all along the path. We pulled Ruby in her wagon to minimize the fatigue (both of Ruby and of Lehr and my arms). Ruby's eyes were SO wide when she saw all of the neighbors in their costumes...I can only imagine what she thought of it all!
Once we paraded down to the pool, we grabbed some pizza and then started our candy hunting. The crowd was a little smaller than usual this year, but that worked out in our favor because we were able to trick-or-treat up a hill that usually makes mommies nervous in the dark before the sun went down. Maddux and Eli bounced around between their friends, hitting as many houses as possible, but staying close enough that they could keep checking in with us and Ruby. Lehr and I each walked Ruby up to a few houses. The first one was my favorite: she walked up and the homeowner put a candy in her bucket. Ruby just stood there (maybe signed 'tahnk you'), so he put another candy in. And then another...it was like a standoff! She alternated the wagon and Daddy's shoulders the rest of the night.
We did offer Ruby candy a few times, but she wanted nothing to do with it until the very end of the night when she had a root beer lollipop. No rain, no melt-downs,  and we trick-or-treated more houses than we usually do, thanks to the early start we got on the evening. Maddux and Eli had so much fun with all of their friends, and I would say Ruby's first walking Halloween was a success!

Thursday, October 29, 2015

School Party

Ruby had her first school party today!! How awesome is it that Ruby got released from the hospital less than 24-hours before her class Halloween party...good times!

The kids got to wear their costumes to school, and the parents were invited to the 'party' at the end of the day. Since they are two, the party consisted of a snack and parents taking a boatload of pictures for 15 minutes. Simplicity at it's best.
Since I was one of the snapping moms, I got there just before the party was to start, so I saw the class come in from the pumpkin patch to the classroom. Ruby was being carried, as I've seen her in the past. (Some of the transitions are a bit far for her legs, especially at the end of the school day. The teachers don't seem to mind at all.) The teacher that was carrying Ruby told me that she had such a great time out there, sitting amongst the pumpkins.
The kids came in and sat on the carpet. Ruby didn't sit initially, but she wasn't the only one. Once the songs started, she was locked into the teacher. And when another mom sat down with her son, Ruby backed herself right up into her lap. When the kids were released to their seats for their special snack, Ruby was called first and sat right down to eat.
Ruby ate the rice krispy treat and pretzel at least as neat as the other kids. And when the teacher was going through a song or two on the carpet, Ruby participated as much as any other child. While I heard some others using more words than her throughout the time I was there, the gap that I was watching for at every corner was not glaringly obvious. Outside of Ruby being carried into the building, she did not stick out as being different.

To say it was a good morning just doesn't do it justice.

Wednesday, October 28, 2015

29 Days

Round one included 19 days in the hospital and Round two was 29. 29 ding-dang days of our family not being together. Yuck. But now that we are on the other side of it, it's in the past.
Good gravy, we are OUT! Ruby's ANC was 47 on Monday, 90 yesterday, and this morning, a whopping 210! The team said her numbers would go up quickly, but one even admitted to me that she didn't think it would go up that quickly. I literally threw my hands in the air when they told me it was over 200...that's how excited I was.
So after a few restless nights of sleep, either due to being hooked up to an IV during bedtime again or due to the two new teeth that popped yesterday, Ruby slept very well last night. So much so that I never heard her stir during the visits from the nurses. It's a good thing too, because when her brother and sister get home from school, she will be on sensory overload and overstimulated to the max!
So now the plan is to be at home until next Wednesday morning. Ruby can go to school (YIPPEE!!), trick-or-treat, and enjoy fall for a few glorious days. When she goes back in, she will be sedated for a lumbar puncture to check if her spine and brain are still cancer free, and then she will be admitted for chemo round three. This round is 96-hours of infusion (four days), but because it typically starts around dinnertime, Ruby will be on the drip for five days. That means she could go home Sunday. I'm thinking more like Monday, but as long as it's one of those, I'm not complaining. The protocol from there is for the nurse to come draw blood 2-3 times a week to watch her levels and be vigilant about hand-washing and keeping her away from anyone obviously sick. Outside of her spiking a fever, she should stay home throughout the rest of round three. Wouldn't that be amazing?!?!

Tuesday, October 27, 2015

Officially Unofficial

Two forms of rounds today....one with the Nurse Practitioner that Lehr and I have found the most consistency with so far and one with the Team. Both gave mostly similar reports, so that's something! As usual, the team gives us information and we follow up with plenty of questions (which the team answers), but all plans are subject to change if counts stop rising or another fever spikes.
Ruby's ANC is up from 47 (yesterday) to 90 (today). The mono's are still looking good as well. The plan is for her to be released tomorrow or Thursday; ideally her ANC would be over 200 and rising to go home. She would then be home through the weekend and return next Wednesday to have a lumbar puncture and start round 3 of chemo. She could only have to stay five days for that chemo round; once the 96-hour drip is completed, she should be able to go home.

Ruby's appetite has dropped in the last few days, starting around the time of her fever. She ate alright over the weekend, alternating big and small meals, but so far this week she's only eaten little meals. No real concern as she is still eating and drinking....it's just a challenge to find what she'll eat at any given meal.
So until we leave, we'll continue to move around slowly while we are hooked up to fluids or antibiotics. Thankfully some clowns came to break up the boredom for a few minutes yesterday!

Monday, October 26, 2015

It's About Time

Lamentations 3:25-26  The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to wait quietly for the salvation of the Lord.

Yet another Monday in the hospital.... Lehr stayed with Ruby for the last 36 hours, during which time she did have a fever. With no immune system, it's hard to fight off germs, in or out of the hospital! Her temp went back down quickly, but she still has to receive antibiotics every eight hours, which started Saturday night. That also means she is hooked up to an IV fluid 'pole' that makes being 2-years old hard. Lehr was able to get her to ride on the cart to move around the hospital yesterday, but so far today, she's not having much of that. (Lehr also got a lot of extra cuddles from his girl who was feeling a little extra snuggly during her fever.)
Ruby's blood work this morning showed great news: instead of '0' (where it's been stuck since last Sunday), Ruby's ANC is now at 47! A far cry from the 500 we want it to be before we leave the hospital, but once this number starts to move, it tends to move quickly. Even more promising is the monocyte increase. I believe the team quoted a 20% jump in them in the last day, which is associated with recovery from an infection (fever). The team is confident we will go home by the end of the week (yes, we've heard that before). I also asked about her being unhooked for her wake hours and we will be granted that wish after she receives hemoglobin this afternoon.

Ruby's cycles of treatment should last 28 days from day 1 chemo start to day 28 being the her fully recovered and ready to start another round. Tomorrow is day 28 for her, so it's safe to say we will not start round 3 on this Wednesday, as originally planned. Delays in the schedule are typical and usually come in this fashion: fever/infection delaying the number recovery portion of the cycle. Today the team said based on her going home this week, she would start round 3 next Wednesday.
Nothing is ever set in stone with this process, but if this recent schedule change is true, Ruby will be home for Halloween which is oh-so cool. We had a back up plan in place, but I'm excited to not have to use it. Her treatment and hospital stays will coincide with Thanksgiving and Christmas as well, but I feel those holidays will be slightly easier to work around. Since we celebrate both of those inside of our house and they are independent on others, if we need to celebrate a few days early or late, so be it. But Halloween, the trick-or-treating part anyway, is very dependent on others. Ruby wasn't walking last year, so this will be her first real trick-or-treating experience. I am so excited at the possibility of her being home! Seems His timing is always perfect, even when I do NOT wait quietly or patiently.

Sunday, October 25, 2015

Maddux Talk

Forgot to post this when we got back from our trip....That girl!!!
We were talking about our upcoming DC trip and Maddux asked if we could maybe get something while we were there, "you know, to take home?" I said yes, probably. She said, "Good because I want to get a necklace with a palm tree." I said that typically when you take a trip somewhere and get something, 'you know, to take home', it's something to do with that place so that you remember it, and DC doesn't have palm trees. I told her we would look for a souvenir. She said, "I know...that sounds great. I think I want to get a souvenir that hangs from the ceiling." I said, "No, Maddux, that's a chandelier." She said, "Oh I know that....it just sounds the same though, so I said it."
"My favorite things about DC were #1 - The Spy Museum and #2 sleeping."
 "Whaaaat?"
"The beds were SOO comfortable!"

Thursday, October 22, 2015

You Make Me Brave

As Your love, in wave after wave, Crashes over me....For You are for us, You are not against us - Brave, Bethel

You make me brave. Such a powerful chorus.

I love this song; it is one that I stumbled upon the very week of Ruby's initial blood test recall. It's one I find myself humming often, even without realizing it, and it is definitely one that I find comfort in when I'm feeling very NOT brave.

I know it is God that makes all of us brave when we need to be, but lately this song makes me think of Ruby. Not only is she crazy brave, to be who she is unashamedly, to stand proudly before everyone as if she did not have a label on her head, to face cancer, but she helps me find bravery.
She makes me so brave, even though I don't feel like I'm brave. I know this because when I see someone else going through something in their life and I think that there is no way I could handle that, I'm often reminded that what we are in the midst of is pretty darn crazy. But Ruby somehow makes me forget how hard it is.
Ruby makes me brave enough to face things that I was (and still am) more afraid of than anything. She makes me brave enough to be a mom of a special needs child. She makes me brave enough to be a part of a community of other kids with special needs. And now she makes me brave enough to have a child with cancer. The reason I say she makes me brave is because all of these things have been easy (even when they're not easy). Easy because she totally takes me by the hand and leads me through it. She gives me milestones when she knows it is what I need to keep going through the many hours dedicated to PT. She gives me words and sounds when she knows I am starting to doubt all of the oral motor exercises and flash card drills I put her through. And she takes on chemo without batting an eye because she knows this process is hard enough, and her slowing down and/or showing signs of sickness would be more than I could bear.
So I guess this is just another example of God using people to reach other people, using one person's story to tell another person's story, using someone's bravery to elicit someone else's bravery. So thankful He is for us!

Stay The Course

Psalm 119:1  You're blessed when you stay on course, walking steadily on the road revealed by God.

Stay the course. Stay the course. Stay the course. That is my mantra these days because it would be so easy to NOT stay the course.

Even when we got the repeated blood test results indicating low platelets and leukemia cells, Ruby did not show signs of being sick. Even when we found out what symptoms we may have seen that would have indicated the cancer, the symptoms didn't exist for Ruby. Even when we gave her a port, and chemo, and more oral meds than I have the mental capacity to remember the names of, and antibiotics (including one that blew her up like a balloon), Ruby does not appear to be anything other than very healthy.
So when the chemo gets wheeled into her room, it feels surreal. Like there has been a mix-up with her test results and we are in the wrong place at the wrong time.

So when we hold her down twice a day for 2-4 oral medications to be administered, it feels like we are part of a crazy social experiment in stubbornness.
So when we spend day after day (after day after day) in the hospital with nothing on our agenda other than making our rounds to the garden, the play room, our speech cards, the garden again, it feels like we are locked inside of the zoo by mistake.

It would be so easy to not hook Ruby up to the chemo. It would be so easy to not give her the oral meds that she hates so much. It would be so easy - SO easy - to leave the hospital right now. I know her counts are low and she is very vulnerable to anything and everything, but her energy is so high and she is so healthy outside of her blood counts. It's all I can do some days to stay here and trust in what the doctors are telling us. Because when they tell us that we are still waiting on her numbers to go up before she gets to go home, followed by the reminder that we will start round three of chemo in our course of six less than a week after she goes home, it can be a bit overwhelming.

Monday, October 19, 2015

Spread Too Thin

1Peter 5:7  Cast your anxiety on Him because He cares for you.

Ruby is still skipping right along, unaffected by leukemia and chemo and long hospital stays. That girl is so resilient! Her hair continues to thin, but we are not yet at the point where I'm ready to shave it; some styles still hide the growing bald spots enough. Yesterday Ruby's levels were low. Her ANC was "0", to be exact. And while it was only by a slight margin, this morning's white blood cell count was up from yesterday. I know that doesn't mean it will continue to climb quickly, I am hopeful that means that we are done dropping and now are just waiting for the 'up'. If all goes as we hope, she may come home by Sunday. Round three would start next Wednesday, but she *should* only have to be in the hospital for five days as she receives her 96-hour chemo drip.
A little 'funny'; last night's nurse was one we've had more than any others throughout this process (maybe 20% of the time?) and we love her. I heard her come in at 4AM for vitals and to take blood. This is normally something Ruby sleeps through, but I heard Ruby moving around and the nurse quietly whispering to her. (I chose to stay in bed unless my intervention was necessary. It wasn't as Ruby went right back to sleep when the nurse left.) Just before bed tonight, the same nurse came in to do pre-bed meds and vitals and told me that during those 4AM vitals, Ruby kept looking at the nurse and saying "up". Nice try, baby girl...nice try.

So why the verse? No anxiety surrounding Ruby at the moment. She is great. We had school conferences for Eli and Maddux today. While they were 'big picture' fine, it was (is) obvious to me that stuff is starting to slip for them where school is concerned. There is only so much I can do from the hospital, and when Lehr gets home from work it is dinner with as much school as he can fit in the short amount of time he has for them before it's time to get ready for the next day and get to bed. The routine of daily after school homework and me really really checking up on what is due and what concept(s) need explanations has been out of play for the last eight weeks and it's starting to show in their grades and conduct.
I know they are fine, and they will be fine, but this is one more example of me wanting to have my hand on everything and stressing out when I can't. And because it's never just one thing, I worry what other ways these hospital stays are affecting them... Is there resentment? Anger? Sadness? We talk about it with the kids, but they're not sharing those emotions with us. (Which can easily take me down another rabbit hole of if I'm losing even more closeness with my kids to the point that they're opening up to me even less.)

I can't fix this now....I probably can't fix it ever. So instead of getting crazy with homework charts tomorrow after school, like I really want to do, I'm having my mom come to the hospital to be with Ruby so I can spend a few hours with Eli and Maddux when they get off of the bus.

Sunday, October 18, 2015

Buddy Walk 2015

This was Team Ruby's second year participating in the Buddy Walk. We were so blessed again with a day of amazing (AMAZING!) fall weather. Sunny, but only about 60 degrees...couldn't ask for better!
Due to Ruby's hospitalization, she could not attend the event, but I did order a big 'Phat Head' to bring with us to the park. It seemed to help our friends find our tent, as well as represent the reason we were there.
We had a different crowd from last year; some friends were able to attend again, but many had sports rescheduled for this afternoon due to the crazy amounts of weekend rain we've had this fall. And yet our overall numbers barely dropped because so many awesome new friends joined Team Ruby! From friends at church, to friends from Gigi's, to friends from boot camp, to neighbors, to classmates of the older kids...even Ruby's favorite therapy dog (and parents!) came to walk in her name!
Our group picture was missing four or five families that attended earlier than the photo time; 94 is my best count of total Team Ruby attendees for the day. Crazy! (Aunt Megan stayed at the hospital with Ruby so that our whole family could be at the walk...so cool.)
Team Ruby raised over $5600! Our goal was $5000, and I thought that was a lofty one, but everyone was crazy generous with their donations. We know first-hand how much those donations benefit the Down syndrome community in Atlanta; so grateful for everyone!
Eli said several times, "I wish Ruby was here". So true. That girl would have had an absolute blast this year, but she'll be back next year with a spring in her step.

Saturday, October 17, 2015

Update

As all-over-the-place as Ruby is these days in regards to her physical self and her personality, her response to treatment so far has been by the book. Ruby is still at the hospital as we wait for her numbers to drop. (The chemo kills off everything, so in the days following her treatment(s), she has blood taken every morning so we can watch the specific numbers and their trends. After each chemo treatment, we wait for the numbers to drop completely and then go back up. The chemo, the drop, and the recovery constitutes one round.)
Yesterday she had a blood transfusion because her hemoglobin dipped below 80. (The hemoglobin and platelet transfusions are expected during this part of each round.) No complications and she even had an extra kick of energy afterwards...my mom said she played around in her crib and talked to herself until after 9PM last night!.

As great as she is doing, Ruby's ANC is well below 500, which is the threshold for going out in public. (ANC, Absolute Neutrophil Count, is measured based on Ruby's white blood cell count, and the types of neutrophils/white blood cells present.) This means that she will unfortunately not be attending the Atlanta Buddy Walk tomorrow. We still have many friends joining us to celebrate our girl and her friends, and Ruby's aunt has graciously offered to stay at the hospital with Ruby so that our whole family can attend.

Time Away

Isaiah 40:31  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

I've mentioned that verse before, but it's so just that good, and so applicable to my week!

At dinnertime on Thursday, Ruby's hospital room door opened and Lehr plus two good friends walked in. They were carrying as much of my clothing and shoes as they could fit in bags so that I could pick an outfit to wear. Lehr had arranged a whole night away so I could see my favorite band at a show about an hour away. Less than ten minutes later we were out the door, meeting two more friends before starting our drive.

Crazy. Crazy cool. Cool of Lehr and cool of my friends. Oh yeah, and once the show started I noticed that the sax player was wearing a Team Ruby shirt. 
What the what?!?!
As crazy and surprising as the whole night was, that was probably the most shocked and speechless I was. It should be noted that we kinda sorta know him, since I attend every show of theirs that I can possibly attend, but that in no way takes away from the fact that it is rock star awesome.

The next day Lehr stayed with Ruby until about lunchtime, and then my mom switched out with him. I got to hang outside with Maddux and Eli after school and put up some small Halloween decorations. After dinner, they both went to spend the night with friends. That meant that Lehr and I could go on a date (no babysitting tariff!). 

Thursday night was Lehr's plan (such a great, well thought-out, EPIC plan), and Friday night (small plan). It's so very obvious to me why both of these nights are vital to this experience, specifically for our family and for our marriage. I know the bulk of Ruby's leukemia hospital stay and treatments and Ruby's therapies and Ruby's doctors' appointments falls on my shoulders. To be honest, I'm responsible for the bulk of all three kids' daily activities. (*This is not to say in any way that I do more than Lehr where the kids are concerned....he's way more efficient and effective with his interactions with the kids than I am!) I am more than 100% in support of and OK with this breakdown; it's what Lehr and I chose for our family. 
But it would be foolish of me to not thank God for providing a husband for me that recognizes the relationship between showing gratitude for my contribution and my joy and willingness to carry that 'weight'. And it would be naive of me to not acknowledge that all relationships, especially the all-important marriage one, take work...work from both sides, even when life is crazy and unpredictable. Work in the big epic ways and work in the little no-frills way. 

So when I notice days go by when I feel no fear surrounding Ruby's leukemia, or when I don't find the need to dwell on all she and I are missing while she's going through treatments, this verse is what comes to mind. When I turn my burdens over to Him, He will provide opportunities to renew my strength. He will provide the means for Lehr to plan an amazing 12 hour getaway for me. He will provide a new friend to offer to take the older kids for the night so that I can plan a dinner date for just Lehr and I. He will provide conversation and moments and rest and renewal.

Wednesday, October 14, 2015

Day O Fun

Ruby was all kinds of awake last night. Not sure what is going on with her, but she moved around a bunch all night, and even sat up and talked/played in bed from about 330-5. (That means I was awake too since my bed is about two feet from her crib.)

Regardless, we both woke up in a good mood around 8AM. After a quick breakfast and oral meds that Ruby didn't even cry until the end of (baby steps!), I put Ruby's bat costume back on. She really likes it! I took a few pictures and then the team started rounds with us. Of course it involved more commentary on Ruby's attire than on her health, but that is a good thing. Her platelets are VERY good (as they should be today), and her hemoglobin is low, but not enough to warrant a transfusion today. That means play play play all morning!
Grandma Cathie came to hang out right after they left. (I took advantage of that time to grab a run, a shower, and change out some clothes for Ruby and I.) The two of them were all over the hospital! They played in the library, made construction paper owls in the 2South Playroom, and danced to the self-playing piano in the lobby, all the while riding in the wagon and carrying around her favorite (at least this week) baby doll. It does not shock me at all that Ruby is snoring heavily at the moment.

Tuesday, October 13, 2015

Be Awesome

Colossians 3:17  And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

I can honestly say I am feeling like this verse is kinda sorta being lived out right now. (Not sure if that sounds humble or braggadocios; I mean it to be the former, big time.) There are many moments in my days when I find myself just enjoying our time at the hospital. Seriously! I like our room, I've found a rhythm in our days, and the one-on-one time with Ruby can't be beat. So to me that means I'm moving out of my own way a bit and letting Jesus live through me (and letting Him make me realize how much better things are when I do that!)

This round of chemo, the hospital-living part, definitely started out rough for me. When we came in last Wednesday, I definitely had my hands up, ready to fight. I was ready to fight the schedule given to us, I was ready to fight the steady stream of delays given to us, I was ready to fight anyone who changed anything else in MY schedule. That made for a very hard first two days. (Obviously I was thrashing around in the water.)

Then I eased up around Friday night....spending the afternoon with my boy on Saturday and being home for most of the day Sunday definitely helped as well. I've been at the hospital since 4PM on Sunday and I can honestly say I'm not anxiously watching the clock for the next time someone relieves me. It's almost like I'm finally able to breathe through every aspect of this diagnosis, even the 'little' stuff! Seeing Ruby go through so many different medications and transfusions and infusions is nothing short of inspirational for me. I guess (at least for this week) I finally figured out that if she can do it and not let it bother her, the least I can do is stop complaining about all of the things that bother me.

So that verse above, to me, means "be awesome", because God is awesome, and we are made in His image, right? Ruby's got that down...she does it in her sleep.
After her nap, Ruby and I visited Claire for a little bit and then headed to the outdoor playground. This girl climbs up the steps to a TALL platform and then dives, head-first unless I correct her, down a tubed slide. No fear. By the time I make it down the steps, she is standing up and wiping her hands. 

We decided to head down to The Zone for the Halloween party before dinner, and I'm so glad we did because Ruby had a great time AND scored a costume! We talked about Ruby being a butterfly for Halloween, but it's highly unlikely she'll be home to trick-or-treat this year. So at least for today, she got to dress up and participate in some festivities. I picked out a 'bat fairy' costume for her (it was either that or a Disney princess...any of them), but I wasn't sure if she'd leave it on. I pulled the dress over her, put the ears and wings on, and then fit her tiny fingers into the gloves. She LOVED it. Ruby kept the entire thing on (even the ears!) until we got back to her room and I took them off so she could get another round of platelets. (We were called away from the party to come back to the room for platelets, but before the nurse hooked her up, Ruby walked to the nurses' station and did a few spins to model her costume. Of course.) I will get some real photos tomorrow.
The spots in Ruby's mouth are getting slightly smaller, which is a sign the platelets are being received properly. Here is a (bad) picture of some of them from this morning; they were all over the inside of her cheeks (out of view of the camera) and several on her tongue. Given the change already, and the second bag of platelets, I expect by tomorrow morning that they will be barely noticeable.
Finally, during naptime, someone who handles social media for CHOA contacted me to see if it was ok to feature Ruby on the CHOA Facebook page today. Since Ruby is so 'out there' already, of course I said yes. They posted this just after dinner:


Something New


Ruby had a little bit of a restless night again; not sure what's causing my girl to toss and turn so much because when she's up, she seems to be just fine.

When I gave Ruby her first dose of Biotene this morning (basically a mouthwash that helps her avoid mouth sores associated with chemo), I noticed there were several little black-ish spots in her mouth that were not there last night. Upon further inspection I realized they looked like dried blood...likely the dreaded mouth sores we've been trying to avoid. I alerted the nurse when she came in for oral meds, and she confirmed that they often come on suddenly like that.

Platelets were still not ready, so we ate our breakfast (with no problems, which was shocking because the sores should be painful) and went outside to play before rounds. During that outside time I noticed lots of bruises on Ruby. She's a crazy girl, so she usually has one or two, but they were everywhere this morning and she hadn't had any big falls that I knew of.
We came back for rounds and asked first thing about the sores. As soon as the nurse practitioner saw them she said that it was not sores, but a 'good' sign that she needed platelets (sooner rather than later). They were holding off a little longer because she wasn't bleeding and they only had a partial match. But given the purpura (bruising and mouth bleeds), we weren't going to wait any longer. Everything else looks fine; Ruby's other levels are dropping and her ANC is already less than 500.

Funny thing about those mouth spots. They weren't concerning because they weren't actively bleeding at all, but they did seem to be multiplying...every time I looked in Ruby's mouth again I found more. I thought it was just me :)

So Ruby is hooked up to platelets at the moment, swaying back and forth in her crib because there is someone in the hall playing a guitar.

Monday, October 12, 2015

Drop It Like It's Hot

Ruby had a bit of a restless night last night; lots of moving around in her crib and she even stood up a few times and stared me down. But she still woke up before 8AM with plenty of energy. Oh yeah, and attitude. Today has been a day where I have said, "GENTLE" more than I've said any other words added together.
After a fairly successful oral med session last night and again this morning, Grandma Cathie came to play for several hours. That gave me a minute to send out some emails for the Buddy Walk and organize a few details for this week. Ruby ran all around the hospital, and proceeded to still have plenty of energy when she came back to the room for rounds and lunch. We were just finishing lunch up when Ruby's friend from down the hall came to visit. One would think that Ruby may be a bit tired at this point, especially since it was close to nap time anyway. Nope. She continued to act like she'd consumed an espresso and run around the room like a crazy woman, mostly throwing toys at Claire as a way of sharing with her.
This is the same child whose platelet levels are so low today that she needs a transfusion after nap time. You'd seriously never know this girl is anything but crazy healthy....she is a force to be reckoned with! So her platelet levels dropping are likely a sign that the rest of her numbers will drop in the next few days as well.

Sunday, October 11, 2015

Hurry Up and Wait

Isaiah 40:30-31  Even the youths shall faint and be weary, and the young men shall utterly fall: 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.

Lehr has been so amazing to stay with Ruby all but one of the Saturday nights since we've been in the hospital, allowing me to attend church with the kids each Sunday morning. Not only do I get to connect with friends, but it allows me to the chance to stop everything and be absolutely present to receive God's word. While I spend a lot of time talking to God these days, it is usually pretty rambling (much like my writing), and while I spend time in the word, it's usually very distracted because Ruby doesn't sit still long enough for me to accomplish anything in the hospital, and when she naps, someone is always knocking on the door. Sunday mornings allow me no distractions.

As we worked through another portion of Noah's time on the ark this morning, I was struck by the similarities in the story of Noah and the Ark and anyone who is battling an illness. Many times in the hospital I feel like Ruby and I are living in this surreal world very separate from what happens outside of the hospital. Noah was totally cut off from what was happening outside of the ark during the long time he was inside. Ruby has a stretch of obedience (to the medicine, to the procedure) ahead of her just as Noah had to obey God and go into the ark with an unspecified time ahead of him. And we have to trust that God will see Ruby through her treatments until we get to the other side of leukemia just as Noah had to trust God to get him to the other side of the flood.
I know...it may seem like a stretch to you, but for me it was definitely a moment where everything made perfect sense. We all have floods in our lives, it's up to us if we obey God and build an ark or try to ride it out on our own.

The verse above is one our pastor touched on as he reminded us that everyone is waiting for something. So true..... Before Ruby was born, we were waiting to get pregnant, then waiting for her to be born, then waiting for her diagnosis to feel 'ok' with us, then waiting for her to walk, talk, etc. Now we are waiting for her to get through her treatments so that we can get back to waiting for her to hit milestones.

Now I feel like I've just crudely paraphrased the message this morning and likely misquoted or left out key points. (Sorry, Alan!)

And how does God want us to wait...that's the part I so often struggle with. I probably wait with entitlement rather than expectancy. That is, I probably wait for something I am sure will come because I think I deserve it rather than waiting for something I know will come because He delivers even though I don't deserve it. Did Ruby deserve to get leukemia? Nope. Does she deserve to be cured? Probably not. Will God cure her anyway? Absolutely. Whether it's in heaven or on earth, God will take Ruby's illness away, even though she doesn't deserve it.

So many times my older kids say, "That's not fair." And I am the first to say, "Life's not fair" back to them, and they are likely tired of hearing me tell preach to them about how lucky we are that we don't get what we deserve. How unfair everything is and how we benefit from that.

And now I'm off on a totally different tangent..... my take-away from the message and where it lead my heart and mind today is that if I wait expectantly, with faith in God's promise, He will renew my strength to be able to wait some more. And if I've learned anything about Ruby's leukemia, it's that we are always playing the waiting game.

If you've made it through all of that, here is the update on Ruby. She's awesome. No issues, no fevers; oral meds are even kinda staying down sometimes. We are currently waiting for her counts to drop; that will likely occur towards the end of this week. Then we will wait again for them to come back up to a safe level for her to be able to leave for a minute and then start round three of chemo.

Saturday, October 10, 2015

Thankful

Romans 8:38-39  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Thankful today. So thankful. But not for the things I'm usually thankful for: Ruby's energy, outside playtime, a quick night at home with the kids... Today I'm thankful for that which irritates me. The things that get me all riled up. Things like crazy night schedules that keep Ruby and I awake more than asleep. Things like chemo schedules that change and mess up plans for childcare coverage. Things like unexpectedly long stays at the hospital. Things like Ruby having to be hooked up to fluids longer than I think she should. Those things can really get my blood boiling, thankfully.

Something I realized recently is that God is using those things not only to try and grow me into a more patient, more forgiving, more flexible person, but for a more important reason. He is distracting me.

When I'm focused on things like the schedule I have for Ruby's sleep, or the airplane tickets we've purchased for grandparents, I'm not focusing on other things. Like cancer. It's easy for me to forget sometimes that THAT word even applies to us. I'll hear a commercial on the radio for Team in Training, or see a billboard for childhood cancer research and think, "That must be hard." Then it will hit me - RUBY is that billboard! RUBY is who those runners are fundraising for. And that is a hard road to let your mind wander on.

When I'm focused on things like how much play time Ruby didn't get today because rounds ran late and the nurse didn't hep-lock her on-time, I'm not focusing on other things. Like the fact that our family has been split up more than it's been together in the last six weeks. (By a factor of 1/4!) And thinking about that messes with my mind.

That doesn't mean I'm in denial or haven't gone down 'that road' in my mind. Quite the opposite. I'm an over-thinker who gets lost in my own head more than I should. But the annoyances and frustrations that I get all worked up over seem to clear the cobwebs a bit so that when I do think about the bigger picture, I can do so constructively and with hope.

So thank You God, for giving me all of these little annoyances, all of these little frustrations. It is increasingly obvious to me that God will go to any lengths to prove the above verse. His distractions allow me to digest Ruby's leukemia much easier because I'm able to get all of my frustration out on something as insignificant as a bad night's sleep. That clears out so much of the negative energy so that I can remain positive about the stuff that matters. He will not allow something like cancer to separate us from His love, especially in a season where we need Him so much.

Friday, October 09, 2015

His Plan

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

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

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

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

Oh What A Night

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

Thursday, October 08, 2015

Pausing in the Moment

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

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

Last Night

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

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

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


Wednesday, October 07, 2015

Round and Round We Go

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

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

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

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

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

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

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

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

Tuesday, October 06, 2015

Tender Heart

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

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




I love that girl.