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!