Odds & Ends

Ruby's hair is falling out again. I've seen a few small clumps in her bed, her clothes (and me) are constantly covered in it, like she's a dog that's shedding, and when I brush it, I end up with a handful. The only way you can tell by looking at her is if you notice that her faux-hawk (the long hair down the middle of her forehead back to her neck) is getting skinnier. The sides of her head look fashionably shaved, though we've not taken a razor to them. This really doesn't bother me; as much as I love her hair and it's addition to her personality, the hair loss has come and gone so much that it's never caught me off guard. I was prepared to have to shave her head after the first week, so everything after that has been gravy.

Ruby's speech is exploding and everyone is noticing. Two of her speech therapists commented on it this week; she's picked up the new sounds of 'g', 'f', and mixing of vowel sounds (like mommy, ruby, bye). Last week, Ruby brought me a toy and said, "Hepp. Me. Peez." Totally unprompted, totally independent, and totally clear. I told her teacher to watch for (and require) her to ask for help that way from now on, and this morning she grabbed me as I picked Ruby up to say that she and the other teacher are noticing so much talking out of her.

We pulled out the potty seat this week. I bought it over the summer with the intention to start potty training as soon as school started and the big kids were away during the daytime. However, our plans changed significantly and I didn't think it would be a good idea to try and explain to Ruby that she had to 'hold it' while being hooked up to fluids and chemo. Nevermind the potential mess of it all, again, while hooked up to tubes and whatnot. So we haven't touched it, even though she stays dry most of the morning hours despite drinking plenty. We still have one more round of chemo and up to three more hospital stays for 2-8 days, so I'm not officially training her yet. She does sit on it when she gets up in the morning and before she goes to be, and before and after her nap. No success yet, but we do have some M&M's, just in case.

Skiing

The kids had such a good time skiing last year that it was on their definitely to-do list this year. The only weekend that lined up for us was MLK weekend, but even that had a scheduling conflict on Sunday morning. Most people would throw in the towel given that wrench in the very middle of a three day weekend, but not Lehr. (He's kinda like a Super Dad.)

After Eli played in the worship band on Sunday morning, the three of them jumped into the loaded up car and drove to North Carolina. Since the mountain is only a few hours from us, they got there in time to do night skiing. Then they woke up on Monday and did a full day skiing.

Maddux and Eli had a great time with Lehr, trying even more runs than last time. While it was significantly colder this time than last year, they had the right gear, and the fresh snow made it worth it.

Home Stay

Here's something that sounds like a great thing, but isn't always: staying home for count recovery.

Do not mishear me; given a choice between staying in the hospital through count recovery, like we did for rounds one and two, and going home for that time, I choose going home every time. But it's not like we are *really* home for that 3-week period.

Ruby finished her fifth round of chemo last Wednesday, putting her home Wednesday afternoon. Saturday afternoon we discovered a tear in her central line (the tube coming out of her chest), so Lehr spent four hours in the hospital with her to get it fixed (no notice). Sometime this week, it is very likely that Ruby will have to spend the entire day in the clinic to receive blood or platelets or both (less than a 24-hour notice). And if she doesn't need them both at the same time, that will mean two visits to the clinic for a day. Next week? We will be on lock-down at the house. She will not be able to be in public, and we won't be able to have visitors, due to low counts. The low counts always result in a 48+ hour stay in the hospital when she spikes a fever (about an hour's notice). The following week, she will be admitted for 8-days for another round of chemo.

Yup....sounds like a big ole complaining post, I know. It's really not that I want to complain as much as being home makes me realize just how much our life still isn't our own until this is all over. At best, any plans we make these days (at least involving either Lehr or myself and Ruby) are tentative. At best, she's home for seven days without a trip to the clinic or hospital. At best (and this has only happened once), she goes 14 straight nights in her own bed. That's not good enough for me.

So because our life is not our own, because we are so close to the end, because I'm ready to put this behind us, March can't get here fast enough.

Speech! Speech!

This girl is starting to take off in the speech department. For reals. She comments on everything, and people other than me are starting to know what she's actually saying! A friend watched her while I went to a doctor's appointment this week and she was blown away by how much Ruby was talking.

The biggest example of this is her reading a book, or singing along with songs on the radio, or talking about her body parts. I am trying to get it on video, but until then, it goes like this. I say a body part (elbow, foot, chin, etc.) and she points to it and repeats the body part. At this time, she can identify about fifteen of them and at least half have a word approximation that is pretty darn close. She also continues to surprise me with random words that come out so clear. Today was "Thank you" and the other day was "umbrella".

This is not speech, but it's OT....Ruby loves to feed herself and often will fuss at me if I try to feed her instead of handing over the utensil. She's also starting to be 'silly' during all tasks, so while she knows what to do, she will play around some times (this happened a few times during the video.) Ruby is still working on keeping her tongue in and lips together while chewing; process improvement :)

Packing Up

James 1:17  Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

Some days I feel like if we're not packing, we're unpacking. There is a constant filling and unfilling of bags and cars, and no matter how many times I do it, I still haven't mastered it. But today is packing up to go home, so none of that matters. (Read: it's all thrown randomly in any bag I can find.)

Yesterday was a good day. Ruby chose to make it eventful by coming unhooked from her chemo (her second time doing that). There was no haz-mat team this time though because I saw the instant it came unhooked and the nurse came right in to help me. I had her in her crib, watching a speech video (more on that in a minute) and I had changed her diaper and checked her connections just a few minutes before. As I sat back down to my knitting, I looked up at her getting herself settled in a corner of her crib and I saw the chemo tube fall away from the Ruby tube.

The bad news with chemo or blood products (we've done that too!) coming unhooked is that it potentially slows down her discharge because we have to order new chemo and get her rehooked. The good news (and I think she knows this), is that it gives her free, unhooked time while we wait on the chemo. Since this is not my first rodeo, the minute the nurse hep locked her this time, I grabbed Ruby out of her crib, threw on her shoes and we did laps around the Aflac Unit until the new chemo arrived (maybe ten minutes?). When I say we did laps, this girl ran (almost), and belly laughed, and swung her little arms, and loved every minute of it.

So why was Ruby hanging out in her bed? This whole trip has found Ruby very energetic. VERY energetic, and not too keen on sleep. She's been routinely wired until 9 or 10PM (at home she's snoring by 8PM at the latest), and she's woken up before the sun, standing in her crib and saying, "Up! Peeeze!" sometime between 5:45 and 6:30AM. I was determined to not have that be the case again last night, so I didn't put her down for a nap today. Instead we watched a speech video for about an hour and powered through the afternoon. As expected, Ruby was fine with this. At 7:45, she could not keep her eyes open anymore. She even slept through being hooked up to fluids at 8:15. And this morning? 7:15. (I'll take it!)

So here we are, at the end of the 5th chemo admission (the end of the 5th round is when her counts recover, in about three weeks), still amazed at how well our girl is doing. Thanking God every day for the gifts He has given us through, and in, this process.

Almost There!

We're getting closer...the LAST bag of chemo for this round will be hung in about an hour!

Yesterday was very busy, and it went into a late night, so no blogging for me. Between nine and eleven yesterday morning, we had a revolving door. Seriously, SO many people came through here that many times they would be in the room at the same time! It started with an Occupational Therapist, then a volunteer reading a book, then the nurse for vitals, then a Music Therapist, then rounds with the whole team, then a Speech Therapist, then the nurse for Ruby's chemo flush. We didn't leave the room until noon when we got our lunch; that is very unlike us.

Ruby had a good lunch - her appetite has been mostly fine this round - and then we hung a new bag of chemo before she took a nap around two. She didn't nap much longer than an hour, but something is going on with this girl because she was W.I.R.E.D. last night. I started getting her ready for bed around 7:50 (which is later than she usually falls asleep at home), but I was reading books, singing lullabies, rocking her, rubbing her back, doing anything I could to get her to settle down, until 9:50. That's two solid hours. I have never spent that long putting Ruby to bed...seriously. I had a few rough nights with Eli when he was a baby, and maybe one or two with Maddux at some point, but Ruby has always been a quick sleeper, and self-entertainer. The issue in the hospital is that she's hooked up to three lines at night (fluids and chemo), so she tangles immediately when I just leave her in her crib, pulling the tubes tight and freaking me out.

Sooo...we may not be taking a nap today. Between the late nights a few times this stay and the early (for Ruby) wake-ups between 5:30 and 6:30, Ruby obviously has too much pent up energy from being hooked up to a leash. I got her out in the halls several times each day, urging her to push her cart through the halls, but sometimes she just wants to ride, which does nothing to help with the energy.

Everything is still on track for Ruby to go home after lunch tomorrow afternoon. Looking forward to going to school on Thursday!

Friday Updates

Not sure if I mentioned it, but yesterday was crazy good. Great nurse, productive therapy day for Ruby and I, lots of reading, LOTS of walking (PT), and all around great productivity (considering we are sequestered to a small portion of the hospital, mostly in our room). Our ability to get through speech and whatever OT exercises I throw at her definitely depends on Ruby's focus. (Good thing for us, Ruby is usually excited to 'work', whether it's speech or PT.) And yesterday, her focus was great! She napped hard, but was 100% when she was awake.

This morning's rounds were uneventful, as they should be this stay. I asked the Nurse Practitioner we love about how this whole thing ends after she finishes the next round, and it was confirmed that when Ruby recovers from Round 6, she can get her port taken out rather quickly. Music to my ears! I am so eager to get this girl in swim lessons!

The NP also asked me about therapy while admitted, and kinda pushed for us to utilize some while we are here. Apparently OT and Speech will come to see her this visit. (Speech already came this afternoon to check in with her and try to set a plan.) I'm always a fan of getting some additional eyes on what we are doing and what she is doing, but this also brings me some frustration. I definitely intentionally asked during round one, and maybe round two, about how to get services for her while she was here (since she was here for 50 days between those rounds), and I got nowhere. On the other hand, the time in the hospital has allowed me to sharpen my therapeutic skills, at least with speech. And when we are here, she and I usually knock out two 'sessions' each day.

Sidenote: I can't get video of Ruby's antics in the hallway because she tries to push her chemo pole so fast that I need to keep both hands connected to steady and slow it. Here is what she looks like though (no joke):

  

She seriously puts her feet on the ground, grabs the blue bars and says, "Dooooooh!" (Go) as she starts to walk so fast she's all but running. 

Round Five Updates

This is Ruby's first 'intensification' round of chemo, meaning it's no longer getting her into remission, but rather solidifying it. (I think?) The protocol for Ruby this round is a one-hour infusion of chemo (one we've not had before) three days in a row, and she's hooked up to a continuous chemo (one she's had many times) for seven full days. That means she started at lunchtime yesterday (Wednesday) and the continuous chemo will run through next Wednesday at lunchtime. The constant hook-up is not ideal, but it *should* only be one tube. Right now she's hooked up to three: one for each chemo and one for fluids. I did talk to the team about fluids this morning; she's been hooked up to them since we've been here.

I am not a fan of the fluids hook-up because I have yet to receive a reason why she needs fluids. Ruby has always been drinking enough (they chart her diaper output, so it's easy to tell), she doesn't have a fever, and the fluids make her face a little puffy and her diapers too full too often. I seriously cannot keep that girl dry, so she has ended up with a diaper rash the last three stays when they've had her hooked up. When I brought it up during rounds this morning (the team didn't have anyone I had met before), they looked it up in their chart and couldn't find a reason to have her hooked up at all.

So they said they'd decrease it to only at night.....

Baby steps, I guess.

Ruby is still happy, eating well, drinking well. It's amazing to me how well she's doing, considering that typically patients experience the cumulative effect of chemo, making each round a little harder than the last. It's almost like it's been the opposite for Ruby. While we've noticed some fatigue when at home during rounds three and four, her general ability to handle the chemo itself (while hooked up) seems to be getting better with time. The first two rounds found her a little picky with foods or fatigued during the continuous drip, but this time, she's running around, as much as she can on her leash, eating everything she ever does. She took a hard nap this afternoon, but didn't act tired before it, and woke up ready to go. SO ready to go, in fact, that our evening consisted of her pushing her pole (instead of catching a ride on it) up and down two long halls, again and again. I had to hold onto the pole myself to slow it down because I was convinced she was going to push it over with the force she was giving. And her speed was seriously of the run variety rather than the walk....crazy girl!

Ruby did have one oral med today: Zofran, which helps with nausea. We've never used it outside of when she's actually hooked up to chemo because she's not had any issues with that. At dinner, I thought we might have our first bout; she had some deep coughs/heaves a few bites into dinner, followed by some tears and hugs from mommy. But then she picked up her head, said, 'More!', and was fine the rest of the night. This girl is so mind-over-matter...it's not even funny.

Numero Cinco

Because Lehr is amazing, he offered to take Ruby to the clinic for her fifth admission this morning. Because he knows, out of all of the craziness surrounding Ruby's leukemia, the biggest stressor and 'I can't' for me has been clinic days, for admission or blood products.

I loathe them.

If you think that I've got a great attitude about everything and always seem so positive, catch me on a clinic day and you'll quickly change your mind. Because Lehr is Lehr, this time around I don't have to grumble and complain all day. I can stay home with the big kids tonight and relieve him in the morning after I get them on the bus. (In case you haven't picked up on it, Lehr rocks.)

Ruby's call time was 8AM. If it were me going in with her, she and I would have been called back around 10 for an eventual chemo hook-up sometime around 3, just as I'd gotten her to nap in the clinic chair. Thankfully, Lehr and Ruby saw the doctors first and then went back to be hooked up by 11. Seven days of continuous chemo with a few other chemos dropped in there for about an hour at a time over the seven days. This time next week, she will be back home.

This is round five. Five of Six. I can almost see the finish line now. And Ruby? She hasn't batted an eye at the whole process.

She's A Gem

Maddux's heart.

Seriously.

She's always been Eli's biggest fan, but as they've gotten older, she's definitely started giving back a little of the 'less nice' attitude he gives her all of the time. What remains at the core of it though...she adores him with her every fiber.

Eli has his first cotillion night tomorrow and was trying on his suit tonight in preparation. Maddux commented on how great he looked and tried to grab him to dance. He shrugged it off saying something about her not being 'fancy' and he was. Undeterred, she disappears, returning three minutes later, dressed in a nice black dress and holiday socks.

"Now we can dance!"

If Eli had not obliged her, I might have made him sleep out in the cold tonight.

Update

Around 4:30 yesterday, Ruby woke up with a fever. She was fine all day, playing and eating and drinking just fine, but got up, snuggled on her aunt's shoulder and started burning up. With two measurements of over 38C (our threshold for going in), I packed a few bags and Ruby and I drove to the ER.

We knew before we got there that she'd stay overnight because of the timing. We've kept Ruby out of anywhere she might pick up germs (church on Christmas Eve, holiday parties, even Publix!) for the last week because her counts have been dropping, and we had a pretty good idea that they would be at their lowest yesterday. Close enough: her ANC was 50 (we need it to be over 500 and trending up for them to give us antibiotics and go home).

In the ER they drew lots of blood to test for cultures and other things (including the ANC). She received antibiotics right away, but her fever didn't drop at all, even after a dose of Tylenol; I think they said it got over 104F? Around 8PM, Ruby fell asleep waiting for us to be admitted. Once in her room, they hooked her up to fluids and she got something to eat. 10PM was bedtime and she slept very soundly thorugh the night.

Ruby's ANC is climbing: today it is 70 and she has a bunch of monocytes (precursors to the ANC spike). Unfortunately, this morning's RSV test came back positive,. However, she has not needed any oxygen support. Her cough still sounds horrible, but there is nothing (other than suction) they can do to fix that. Ruby received hemoglobin, as her red blood cell count was low. Things were great for the first hour and then somewhere after that, the blood suddenly came unhooked. Seriously… One minute with that, and the next it was dripping out of the tube. That was a lot of fun :)

Ruby also got more antibiotics. And of course more fluids. (I despise because they make her puffy and give her a diaper rash.) We will be here until at least tomorrow, to rule out any cultures and to see how her counts behave overnight again.

Weak Sauce

Isaiah 40:29  He gives strength to the weary and increases the power of the weak.

I've had a lot of moments today (and last night) that were not that. That were not strong. That were very weak. They were flat out bad moments. Moments where I just let go of positivity and wallowed in "this sucks". Moments where I let myself say,

"You know what, I'm sad that Ruby and I are back in the hospital.
I'm frustrated that we planned a fun, homemade dinner for family that we didn't get to participate in.
I hate that instead of spending today walking and riding and skateboarding and playing along the belt line, Ruby is going to be hooked up to blood and antibiotics.
And I'm mad mad mad that Lehr took off Monday from work specifically and intentionally so that we could have one, (just ONE in this season of non-existent 'us time') day without school or work or hospitals or anyone else but the five of us, and now it can't happen."

But I know that is a slippery slope, so while I let myself go there a few times in the last 24 hours, I always go back to the blessings:

• Ruby didn't get sick on Christmas day.
• Ruby was in generally good spirits during her highest fever (instead of the obvious discomfort she was in last time). 
• Ruby got admitted to the ER very quickly, getting her out of the waiting room, which is oh-so important in this 7-10 day time frame that we've been protecting her from all indoor public areas due to no immune system. 
• I got to take Maddux to her Christmas gift of the Nutcracker before Ruby's fever hit.
• Ruby slept well through the night. 
• Ruby has RSV, but isn't showing any need for oxygen or other respiratory support.

He does give us strength when we need it, and He does provide perspective to remind us of our many many blessings. I'm so grateful He gives us grace to have weak moments as well.

Christmas

We hoped and hoped that Ruby would be home for Christmas, and we got our wish. It was so nice to have all of us together for Christmas Eve and Christmas Day! Ruby's counts were too low for her to go to church on Christmas Eve, but we still drove around and looked at lights together and celebrated in all of our other traditional ways.

Eli and Maddux got to sing in the Christmas Eve service, so they got all dressed up. Had to take some pictures, because they looked so fabulous and way too old. After we got sushi take-out (might be a new tradition!) and looked at lights, the kids got dressed in their PJ's (matching ones from Grandma Cathie, their favorite tradition) and they opened their gifts to each other.

The morning of was fun: seeing Ruby come down and find what Santa left was a treat. She got a crawl-thru tunnel and two hands-on toys. She (and Eli and Maddux) dove right into the tunnel.

I set up a Jesus scavenger hunt the night before, so after they got Santa gifts, we steered them towards putting Jesus in the manger (which we typically do before anything else). When they went to the drawer to get Him, I had our "Keep Calm And Find Jesus" ornament in there with the first clue. They had to work together to find the next clue based on the card (sometimes it was a verse or something that rhymed or whatever worked for me at the moment of me writing them out :). The hunt had some ups and downs, but in the end they got it and it was something we will hopefully do each year.

We had our traditional breakfast of dutch babies....the kids insisted. Presents and playing ensued. As far as gifts, Ruby loved the tearing into presents, but she had no real care for anything inside. It was so fun to hear her yelling in excitement as she ripped the paper, only to drop the box once she'd unwrapped it.

The only 'big' gift was ours to Maddux: she and I will see the Nutcracker at the Fox Theater tomorrow. She's been asking for about a year to go to the Fox (she's been once for one other gift), and this month she's been hitting hard with the request to see the Nutcracker. She was super excited when she opened that gift.

When Ruby went down for a nap, we all played "Clue"; it was the big kids' first time. They loved it and it was about an hour of fun and family....perfection.

My favorite memory from today was making dinner. Our 'tradiitional' Christmas dinner is homemade spaghetti and meatballs. Lehr and I made the meatballs yesterday morning, but the pasta itself is saved for the afternoon of, and the kids usually help.

Maddux was very into it, as expected, and Ruby participated as well. But her part was more of a 'grab and go' style: she would walk over to Maddux at the control center and look up at her with wide eyes. Maddux would give her a strand or two of (uncooked) pasta and Ruby would take off as she stuffed it into her mouth until she got to the back porch or it was gone, whichever came first.

Rinse and repeat.

We ended the day with a birthday cake for Jesus, something the kids have always had on this day. They asked for chocolate cake this year, which seemed to go over well with the rest of the clan.

Big Time

When you are in the fifth grade at the big kids' school, you get to go on an overnight trip with your classmates and teachers. For many years now, the destination was Jekyll Island, but after last year's trip, they shut down their school-trip-area for construction. That meant that Eli's class would have to find a new location. Driftwood Beach (right near Jekyll) is where they ended up, and it doesn't seem that anyone was disappointed by that.

The kids had a GREAT time, hiking, walking, even swimming (it was CRAZY warm in Georgia that week) at the beach. They learned a bunch and got a lot of hands-on education on the beaches and surrounding areas. Because of the late booking of the trip, there was not enough space to house Eli's entire 5th grade at the same time, so they did have to split them into two trips. Eli went for the first trip, leaving Monday morning at 5AM and returning on Wednesday at 6PM (thoroughly exhausted, I might add).

While the trip was fun, we did have an issue requiring a phone call home on the second day. Apparently Eli was outside of his cabin (as in outside) at midnight. He was in his PJ's, and he was all alone, knocking to get back in as the door automatically locked when he closed it. He claims not to know how he got out there....likely a case of sleepwalking. While we don't have issues with him randomly sleepwalking at home, he does get up in the middle of the night to use the restroom often enough, and he is not awake when he does that. My only assumption (because Eli is not someone who has shown enough bravery to go outside by himself in the middle of the night, given that he won't go upstairs to shower by himself after dark) is that he got up to use the restroom and being in an unfamiliar place, he ended up outside. Scary, crazy, stressful, but thankfully he woke up before anything happened.

Speech Update

As much as I get caught up on Ruby not talking as much as her peers, she is making a lot of progress. When I go through speech cards with her, she repeats (and even reads some of) the words pretty well. She just doesn't use those words on her own in every day situations yet. But she will read: apple, bus, and up on her own with no prompting or pictures.

When we go through the alphabet, Ruby is starting to anticipate the next letter sometimes. She also recognizes a few letters: B, M, O and sometimes E. She is also starting to 'comment' a bit here and there with real words. This last week she has told me 'busss' on two different occasions when we passed a bus on the road. And as we were reading a book this week that mentioned a knee, she stopped, pointed to her knee and said "kneeee!".

Here is a longer video with clips of some of the words that I run through with Ruby each day. She does really well most of the time; this particular day was just average, but you can still see a few that she reads on her own.

Perspective

As Ruby returned home, it hit me how long she's been at this already. It hit me how far we've come, and how distant those two month-long stays seem now. It hit me how normal this new life of hospital visits and clinic visits have come to feel. But it also hit me how smooth the ride has been.

Yes, Ruby has leukemia. Yes, our family is rarely under the same roof at the same time. Yes, Ruby had a severe reaction to a medicine, and had a crazy high fever a few weeks ago. Yes, Ruby has all but lost this fall's school and therapy attendance, possibly plateauing her progress. But the whole ordeal has still not been nearly as scary or hard as it could be. And because Ruby has somewhat sailed through her treatments so far, it's been easy to take the process for granted. It's been easy to forget that sometimes things don't go as planned. It's been easy to forget that sometimes bodies don't always respond to the medicine. It's sometimes easy to forget to celebrate all of the good news we've gotten along the way. Trying to recognize and dote on every good thing in our lives every day....

Update: Ruby is HOME! She came home this afternoon with great blood counts and a big ole smile. We are not planning to return to the hospital until after the holidays; round FIVE for her starts the first week in January. Until then, she will have twice/week visits from the home nurse to take blood; based on those results she may have to return to the clinic for blood or platelet transfusion(s) at some point. Prayers for kids who wash hands when they come home each day and no fevers throughout our home stay this time, please!

The Mansion of My Mind

I came across a blog this week that spoke so eloquently what weighs so heavy on my heart some days. The author spoke about her daughter, her daughter's chromosomal syndrome, and how it feels sometimes to live in that world. The line that jumped at me is one I could have written:

"it's hard living in the zone of parenting other people hope to avoid."

Hard indeed. For one, it's hard because I hoped to avoid it. Yikes.

I love my daughter. Seriously LOVE Ruby to pieces. Not a day goes by that I don't grab her face and have to stop myself just short of eating her up. And I want her. I actively want her in our family. But who she is isn't who I thought I would 'want' when Lehr and I decided to try for a third child.

So I get it. I get the parents that hope to avoid this particular zone of parenting.

I was absolutely one of those people. I was very close to discontinuing our attempts to have a third child when I found out I was pregnant. And that was almost exclusively because my age made me think that the odds were too 'in my favor' for a baby with Down syndrome. And why I was afraid of having such a baby was because I had no experience. I had no personal connections. I had no real facts. I had no idea what Down syndrome was except for the random and very lacking information I had read in passing or been taught in a biology class once upon a time.

That is why I am so passionate about World Down Syndrome Day and the Buddy Walk and getting Ruby's shirts out there and plastering her face and her videos and her story all over Facebook. It is my hope that those around our family - and their children and their friends - gain some insight into how not scary Down syndrome is. Is my hope that they are not like I was before I had Ruby.

Recently Lehr told a stranger about Ruby and her first question was "How old was your wife when she had her?" When he answered "36", that was followed by a head nod and a "yup..that's the age" type response. Ouch. It's not even that I'm offended by her perhaps insensitive or ignorant reply, it's more that it pains me to remember that I would have thought the same thing: pity and a 'that figures' response.

Back to the blogger's statement about living in this zone. She followed that with "It's hard having a child other people actively don't want." How I feel about that is something I get stuck on from time to time. It's not hard to love Ruby, but because of the lack of inclusion in so many areas of our lives, it is sometimes hard to parent her. Not physically parenting her in my home, with my friends, surrounded by family. But it can be hard to parent her when we're at a park. Or at the hospital. Or in a store. Or anyplace that she decides to act like she's two years old. We all know what two looks like: random tantrums, messy eating, social awkwardness, lack of 'listening ears', flat out disobedience. But I know when Ruby acts two in these ways, the spotlight is on her more, and for many people - people like pre-Ruby me - her behavior is chalked up to her extra chromosome: 'that figures'.

And it can be exhausting.

Exhausting to try and get her to blend. Exhausting to try and disprove any stereotypes I anticipate her audience is believing. Exhausting to feel I have to defend her 'special need' to everyone we encounter. Exhausting to feel like I'm always on guard, ready to stop her from overstepping her boundaries. Exhausting to parent her under scrutiny filled with pity.

Good thing she's cute.

In all seriousness, this isn't something that gets me down every day...it's just where my brain goes when it has a moment to wander every once in a while. Mostly it's one of those things that I don't even realize I've been thinking about until someone else voices it and then I feel a weight lift as I realize what I've unintentionally been carrying. So today I'm dropping the weight...hoping to not pick it up without noticing again.

Just The Facts, Ma'am

Last night was restless for both Ruby and I. She moved around all night; she often does the first night back in the hospital when she's suddenly hooked up to a line again. We got up around 6:30, which is on the early side for her, so by 10AM, she was already trashed. We managed to play and stay awake for lunch at 12:30, but she was falling asleep eating crackers, so I put her down before 1.

Just before lunch we had rounds. So far the doctors have always been so happy with the way Ruby is responding to the chemo; that is a blessing. This round is the final of the first phase of chemo, and the next two (the FINAL two) rounds are identical to each other. They will include one of the same chemo drugs she's had already and one new one. The continuous drip will last for seven days each time, and the team warns that flu-like symptoms tend to result. Ruby has been crazy resilient to any sick-feeling side effects throughout this process, but these two rounds may be the ones to make her feel less than great. We'll see!

The Cumulative Effect

Ruby has handled everything thrown at her so far with amazing energy and health. I know if it were me going through chemo and all of the transfusions, I'd have taken several 'sick days' from life by now, but our girl keeps on trucking. Sometime in the last round though, a few side effects of leukemia and the chemo have started to show up. This tends to happen as the patient's body experiences the cumulative effect of the chemotherapy over months.

• Fatigue: This one is a no brainer. I'm fatigued and I'm not even getting all of the meds or waging a war inside of my body between sickness and chemo. Ruby is still very full of energy, but maybe half of her days find her with a dip in energy around 11:30. It may or may not pick up after she eats a snack or lunch. 
• Vomiting: Ruby has yet to get sick on the chemo, and for that I'm so grateful. (Besides the draining effect it could have on her energy and nutrition, I worry that severe vomiting would deter her from wanting to eat or drink.) In the last month though, she has vomited small amounts several times. Usually it's within 30 minutes of eating, and it's never been a big amount or a big deal. Ruby doesn't seem bothered by it; the only way I'm aware of it is if I see it on her shirt or the ground next to her. It's almost like a burp...like a baby spitting up. At first I thought it was only a matter of her eating too much for what her stomach could currently handle. We started giving her smaller portions and that seems to help. She still has bouts of it occasionally, but it's not enough to affect her weight nor does it seem to bother her. For now, we are not medicating with Zofran.
• Chemo-Induced Peripheral Neuropathy: Say that three times fast. Heck, I can't even say it once! Ruby seems to be having some balance issues. Where she was so steady on her feet prior to the chemo, recently she's been stumbling more, losing her balance and falling into walls or down to a sit position. Some of this could be fatigue; her muscles are too tired to do what she's asking of them. It could also be CIPN, which can manifest in pain or loss of feeling in hands and feet, and also muscle weakness and decreased reflexes. 

That last one is the one that gets me right now. Ruby is already battling against decreased muscle tone and the developmental delays that come along with that because of Down syndrome. We have spent countless hours since she was born working on PT (for gross motor things like walking and picking up objects) and OT (for fine motor things like pointing and using utensils). Now I'm seeing some of her skills that she's worked so hard for regress a little. It just makes me sad because, even with her two years of hard work allowing her to achieve milestones quicker than expected, her development is still behind her typical peers, and this new challenge just adds to that.

When we registered Ruby for preschool it was intentionally chosen so she could be around other two-year olds and rise to their level both with speech and physical movements. Between her missing so much school and the CIPN, it's hard to see any progress coming from our efforts; even when she does go to school, it tires her out so quickly. It makes me worry that she is falling further behind those in her class with each passing round.

Not a complete downer post though.....our girl is a hard-worker. For reals. So this just means she will have to keep that up. When Ruby is not hooked up to chemo, she and I are outside at the hospital, playing on playground equipment and climbing up stairs. When Ruby is at home, she is outside with Lehr and the kids, pushing herself on her bike and chasing the soccer ball. It's just standard operating procedure for us. As long as she can, we will keep that up

Patience

Proverbs 19:21  Many are the plans in a person's heart, but it is the LORD's purpose that prevails.

How true. So many times during Ruby's treatment I find myself agitated, frustrated, anxious, downright MAD that things aren't moving faster (usually having to do with the lack of speed for the day's scheduled procedures rather than the speed of her actual treatment). And every time, while I feel justified in the moment, I do recognize that my frustration comes more from my desire for MY schedule and timetable to take precedence. 

I will usually talk myself out of some of this, thinking 'surely waiting 4+ hours at an appointment for anything to start is not the Lord's purpose.' But then I am reminded that it actually might be. Maybe I will have an interaction that leads someone (maybe even me!) to a deeper relationship with God. Maybe Ruby's presence in the hospital or clinic that day will impact someone in a way I can't even imagine.

Or maybe God is trying to grow me in the area of patience. Again. Can't imagine why since I obviously am still struggling with it so much.


Updates: This morning Ruby and I entered the Aflac Unit through the clinic (standard procedure). After we saw her doctors in the clinic, she was hooked up to her chemo at 2PM, which was the earliest start we've had yet! She then napped for a bit, but we did not get moved to our room until after 6PM. Insert need for patience here :) 

This round (#4) is the same chemo as round one and three, with the absence of one chemo drug (can't remember the name). Ruby will be on a continuous drip for 96 hours, and she will receive two liquid doses of chemo each day. 

All of Ruby's blood work is good; her numbers are satisfying the doctors in every way they can. This is the final round of Ruby's "induction" phase of chemo treatment (inducing remission). After this, she will have only two rounds left. We are officially at the halfway point of treatment! Only time will tell if this second half is longer or shorter than the first, but it's a milestone and I will gladly take it!