Halloween

I can't remember the last time I enjoyed watching the joy of Halloween as much as I did this year. I know I  loved it when the big kids were little, and I do remember pausing to take in the fun while they were experiencing things 'new' each year. But as I am often reminded, there is just something about Ruby that makes everything a little more joyful. 

When it comes to dressing up, I love the group costumes. I gave way to the big kids' desire to choose their own when they were little, but even now that I'm choosing another priority I still want Ruby to be a part of the decision, so we usually let her take the lead on steering us. This year that meant we would be dressing up as her current favorite soundtrack: Coco. (She likes the movie too, but we listen to the music of her favorites daily whereas she's probably seen each of the movies once or twice total.) That meant she would be Miguel and Lehr and I were to be her great-grandparents. A few trips to Goodwill (the purple dress was the easiest thing to find), an order from Hanes.com (the red sweatshirt was the hardest thing to find!), and some scissor work completed the ensemble for us.

Because it's 2020, our typical neighborhood parade, costume contest and pizza party were canceled, but we still had trick-or-treating. No doorbells were rung, and only a few front doors were even visited; most families set bowls, displays, or tables up in their driveways either unmanned, or with chairs set up a safe distance away. 

The houses that had people out front were Ruby's favorite, of course. She engaged every person she encountered, asking them "Who are you?", before gleefully proclaiming, "I am Miguel!!" She was tickled at all of the costumes, stopping pirates and princesses and animals to chat and comment on their get-up. She told everyone she saw, "Happy Halloween!" and just took her time soaking everything in all night. Ruby walked 75% of the time, hopping in the stroller mainly when we were trying to cover longer stretches between houses, which is awesome because we were out there for about two hours. 

It was so amazing to watch her just LOVE everything about this holiday - the scary, the silly, the cute, the recognizable - was so fun. It makes me sad that this year we didn't get to attend our favorite Halloween parade filled with even more scary Halloween magic. 

Maddux had a few friends over to trick-or-treat, which I love. (I think that if you are willing to invest time and energy into a costume (and you have good manners) you can trick-or-treat until you're a great grandmother.) The five of them dressed up like the Strawberry Shortcake group, maybe just a little reimagined. Eli also dressed up (like a hot dog again) and went out with a friend for a short bit, but I didn't get a picture.

Halloween

Not too much to report: it was cold - COLD - and kinda wet, but we all participated and were rewarded with candy.

Lehr started showing Ruby little 3-5 minute clips of old Popeye cartoons several months ago. So when we talked about her costume this year, it was a no-brainer. And because I love the group costume, that meant Lehr and I were in too. It was the EASIEST of all the group costumes so far and definitely the cheapest. Ruby's sleeves and 'cape' were sewn on by me, so that shirt won't survive a machine wash, but it did the job.

Maddux had four friends come over to spent the evening with us. There was much back and forth on what they would actually be, but in the final 60 minuets before go-time, it was "Zombie Golfers" courtesy of some white and black eye shadow I found to use as stage make-up for them. They froze, but they had a good time.

Finally, Eli was a hot dog. This boy wants to dress up still, and I love love love that. He told us at least a month before Halloween that he would likely buy a one-piece hot dog costume for this year, and he assured us that it will work for the next several years. He wore it to school (twice!), and the night of, he hung out at a friend's house with several other boys and they even hit the houses for a few handfuls of candy.

Halloween

We love Halloween. OK, I love Halloween. And any chance I can get to come up with a group costume for us is a total win. Eli was totally in this year, but then he and his friends started talking in early September about maybe hanging out together that night. He still wanted to dress up (and do a group thing!) and trick-or-treat with us, so he proposed going to his friend's halfway in. We agreed and forged on with a costume that would likely just be Lehr, Ruby and I. (Maddux does NOT want to be part of a group costume.)

Then a few weeks before Halloween, one of Maddux's friends from school suggested some of them get together to trick-or-treat. All of the sudden I was facing 'losing' both big kids in the same year. I did not sign up for that! We compromised and decided to let them go to a neighborhood around the corner, but only after they did the beginning of the evening with us. They agreed and moved forward deciding costumes with their friends.

Eli and I talked about it and decided he should suggest ghosts for his group. It's a cool enough costume without giving the impression that it took much thought or effort, and it was easy to pull off when you didn't want to wear it anymore. Maddux and her friends all made Care Bear costumes. They each had a great time with some freedom during the main event (a parents was driving around keeping tabs on them and both groups of friends were in the same neighborhood), but they also admitted that they weren't 100% that they wanted to do the same next year. (Score one for mom!)

So what did we dress up as? I really tried to think of something that wouldn't be as 'involved' this year, and that might not cost so much to create. We have always made/pieced together the costumes ourselves, but that can be as expensive as the 'real 'costume!

Sooo, I landed on ET. Ruby LOVES to ride on the front of Lehr's bike, and she looks like a little E.T. on there, so it seemed like a no-brainer. I decided on Elliot for Lehr (so he could ride the bike) and Gertie for me. Easy costume for Lehr and I, and I just had to figure out the face paint for Ruby. Lehr constructed the bike the weekend before while I practiced Ruby's face, and it all came together really well. She had a great time and still talks about being E.T. (Yes, she's seen the movie a few times and loves it.)

 Ruby had a lot of fun trick-or-treating and seeing friends from the neighborhood. She took advantage of having a bike seat to sit in for about 90% of the night, but that didn't stop her from getting candy from the many people that set up shop in their driveway (our neighborhood really goes all out!).

Halloween

The kids were the ones to suggest a family costume this year, so this girl was all kinds of excited. Early in the summer they decided on Star Wars, Force Awakens version. We pulled up photos of our characters and figured out which specific pieces we needed to buy or could make. Then I went to countless Goodwill stores over the course of the next few months. Eli's was a no-brainer to pull together, but Maddux's and Ruby's were trickier. The weekend before the Little 5 Points parade, I caved and took them to Target. All three for $20 each. Honestly, cheaper than it would have been to make them, likely.

In the end, Lehr didn't end up dressing up - we just couldn't pull his Han Solo together. Next year is his year, he says.

Ruby was allowed to dress up for school; I went with the bat fairy from last year for school because it was less likely than her 'real' costume to come home stained. After a quick Halloween party, the parents got to take the kids around the parking lot for a trunk-or-treat. Given the afternoon ahead of us, I didn't want to stick around too long for that (Ruby needed a nap!), but we did hit a few cars. And wow...they were awesome! So many parents took the Trunk thing to a whole new level!

The kids had a great time on Halloween, even though it was a Monday night. We did our annual neighborhood thing and 'paraded' down to the pool for pizza followed by trick-or-treating. Everything started right on schedule and we got started on the main event earlier than usual.

We brought a wagon for Ruby; I was not going to be able to carry her much and there was no way she could walk all that way. (It's a mile just from our house to the pool.) She got out every few houses and trick-or-treated with Lehr or one of the kids. She loved every second of it. A few lollipops, but no major damage in the candy department.

 The big kids had a great time, running around between us and houses with their friends. The early start allowed for more of our trek back to be in daylight. They seemed to have a steady stream of candy consumption, which I totally chose to ignore. We covered even more houses than last year (as we do each year), and they were still in bed at 8:30. Life is good!

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 'thank 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!

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.

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.

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:

The Next Tunnel

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

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

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

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

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

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

Halloween

Awesomeness.

Nope, not the actual day, but the picture.

Finally. FINALLY. This was the third year I tried to convince my crew to do some type of group dress up. In the last 36 months we've discussed everything from Little Mermaid to Cowboys to Toy Story to ET...

As I have in the past, I started talking to them early, to try and get the idea cemented before summer was even over. This year we gravitated towards Despicable Me and it stuck. Around Labor Day I told them we were not changing our minds because I was going to start looking for costumes. (No complaints from them!)

We had a few homemade minions for the Little 5 Points parade, but they didn't make it to our Halloween celebration for some reason. (Glad I spent so long working on them!!) We did NOT win the family costume contest in our neighborhood, but I'm told we were a very close second. (The winners were lego people; they were awesome and very creative, so no hard feelings.)

The kids trick-or-treated until it started pouring on us. Lehr then ran home with Ruby (yes, in his Gru costume) and got the car. He picked up about 8 people (including Eli, but not Maddux - she wanted to walk in the rain with me), but the rain was brief. The kids continued trick-or-treating while I put Ruby to bed.

The bad news: even though the kids liked our dress up, they want to do their 'own thing' next year. Sigh.