Thursday, August 27, 2015

A Pause

I am still in a good place reagarding Ruby's diagnosis. Honest. But this post is about the pause that I need to take to be sad for a minute before continuing on the journey that God is walking us through. This is not the feel good post...this is the poor me post. The one that complains and struggles and can't stop the tears. This is the post about school.

When Ruby was first diagnosed with Leukemia, I realized that her treatment would interfere with school. It choked me up, but it was far enough away that I could still bury it. This week it has come out of hiding and it is a full reality. Today was Ruby's last day at school until who knows when. She could go back in a month, or she could go back after the holidays, or she could not return at all this year. Between the hospital stays and compromised immunity and not wanting to disrupt the class with her sudden return(s) randomly throughout the year, everything is up in the air.

School is a big deal for me. When Ruby was born we quickly learned about the delays and what we could likely expect from her regarding milestones. The gap(s) between her development and that of other children her age grows with time. When she was less than six months old, it wasn't noticeable, but by her first birthday it was starting to show. So we worked with her on everything we could to get her to keep that gap at a minimum. And because Ruby is a rockstar, she has exceeded expectations: she walked earlier than most kids like her do, she's very interested in learning new things, she's curious and social and easy to work with. So when I started looking for schools, I knew all I had to do was find one that would give her a chance because she would rise to their level.

Lots of phone calls and visits and emails exchanged with one school in particular last fall and spring before we finally committed. Then we met with the specific teachers twice before the school year started, to allow them to meet Ruby and ask any questions they had. I was heartbroken when Ruby then had to miss the first day, but she came back on the second day with a spring in her step and wowed everyone. The loved her and told me every chance they got how great she was doing.

Ruby has been to school a total of four times, but that girl loves it. She lights up when I say the word 'school' and she smiles when she sees her school bag. She waddles down the hall to her classroom, holding my hand and pointing to all of the cool things on the wall. Then when she gets there, she finds her picture and points to it before pointing to those of her friends. And to top it off, she says hi (sometimes) to her teacher and then walks confidently into the room without looking back. Ruby is learning routines and manners and social awareness and all of the things little people her age should be learning. And she loves it.

So when I think about how much I hate cancer, it's not because of the scary factor or the chemo side affects (which I'm sure I will hate soon enough). Right now my hatred of cancer is due to it robbing Ruby of experiencing this awesome class she was given to thrive in. Right now I'm furious with cancer because it is stealing from her the chance continue her start with other kids who, while not delayed like her, are starting something totally new also. Right now I'm mad at cancer because it is taking away a time where she was able to do something that had nothing to do with Down syndrome. Right now I'm grieving the window of opportunity we had by starting with full inclusion at a time when she was the same age as other typical kids, still operating at a similar level. Right now I can't complete a sentence about school without my voice cracking.

I just sat down with Ruby's teachers and told them the news. I was shaking the whole time, trying to hold back the tears. I succeeded until the very end when they told me how great she was doing in the class and how proud I would be of how well she's learning the routines. The minute they started talking about her in that environment, doing what I prayed she would be able to do for so long, I couldn't hold back the tears. Her teachers were amazing, ARE amazing, and I hope she returns to them soon.

Wednesday, August 26, 2015

Locker Room

We just had our final appointment with the Leukemia team before chemo starts. It very much felt like the last minute review of the plays before a big game. Or rather a whole season. The good news is, our Team Captain is the star quarterback with JC on his jersey.

The short version of our pregame talk in the locker room:
  • Kids under age 4 with Ruby’s type of Leukemia are prescribed six cycles of chemo. Each cycle lasts 28 days, so ideally, we are done in six months. However, things that can stall her restarting every 28 days are infection, low blood counts, fever…. So there is a high probability of delay in this schedule at some point.
  • The plan right now is for the chemo to start next Wednesday, but we are waiting on confirmation.
  • Ruby will go in the day before chemo starts to receive platelets via IV and then come home. The morning of her chemo, she will be admitted to the hospital. She will be put under and then have surgery to place her port (in her chest), where she will receive her intravenous chemo throughout her entire treatment. While she is under they will do a lumbar puncture to administer chemo to that area and gather a sample of spinal fluid. Later that day they will start her first round of chemo which will go in through her port for 96 hours. She will also take chemo orally 2x/day for the first 4 days.
  • The first round of chemo is monitored incredibly close for everything from allergic reactions to adequate tolerance to desired effectiveness. This monitoring includes many blood tests and another bone marrow biopsy, as well as many machines and nurses keeping very close watch over her.
  • (Here's the doozy) Ruby will stay in the hospital for at least three weeks for the first round of chemo. She will have many other overnight stays, likely 2-5 days each, throughout her full treatment, but hopefully this will be the only long one.
So.... Go Team Ruby! Fight! Fight! Fight! We have the winning team, the best cheering section; we just need to stick to the plan and listen to the wise words of our Team Captain.

Monday, August 24, 2015

Staying Afloat

I don't want to focus on chemo or sickness or hospitals, so this is what I'm focusing on these days: swimming. Since swimming is not my forte - in fact, I often say that I never learned how to properly swim - it seems to parallel the journey we're on since I've never learned how to parent a child with leukemia.

If you've ever seen a 5-year old swim in their first swim meet, you've probably seen more splashing than forward movement. This is likely what I look like when I swim in open water; I'm way more worried about not sinking than propelling my body forward.

So while it's obvious that my body knows nothing about swimming, I do understand how it is supposed to work. I know that my body will float if I calm myself. I know that stretching my body out will allow my arms to pull my body through the water. I know that thrashing and kicking actually slows me down and exhausts me at the same time. I know that if I just use my arms and legs in the way a swim coach would guide me to, I will get to my destination safely and efficiently.

So I'm going to try to continue swimming. I feel like so far Lehr and I have been in the shallow end of the pool with God right next to us, holding us up if we dipped below the surface. But we are approaching the time when we will be swimming in deeper waters, without floaties. God will still be with us, guiding us with His words, but we will have to rely more on what He has taught us because so much else will be clouding our confidence. We will have to resist flailing our arms, we will have to resist fighting against the reality of the 'water', we will have to calm ourselves and allow God to lead us through.

Sunday, August 23, 2015

Triathlon

Eli wanted to do a triathlon again this year. This would make #3: last year we missed it for some other event, but he was adamant about getting back to it. (Maddux opted out.) He even trained a few times, doing a full 100m swim, 2 mile bike and 1 mile run two weeks ago. (All by his own motivation.)
This morning's event was predicted to be a wet one with thunderstorms likely throughout the entire morning. When we arrived at 6AM, the skies were clear and they remained that way until Eli transitioned to the pool to start his race around 8:30. Sprinkles started during his bike and then drops fell through his run. The real fun started just as he crossed the finish line: thunder, lightning and hard rain poured on us for the next 30-40 minutes as we tried to find cover, then get his bike and gear out of the transition area before walking to our car across the highway. All of the while, Eli was smiling; he even said, "Hey, it's not like we can get any wetter!"
Eli did really well, passing several kids on the swim, keeping up with road bikes (he has a mountain bike) and passing several on the bike portion, and running just off of his fast pace for the final leg of the race. He didn't beat his best friend, but he definitely had a good race and he's already asking when his age qualifies him for longer distances.

Friday, August 21, 2015

Double Digits

Ten whole years. A decade. That's how long you've been giving us memories, Eli.
It feels like a whole lifetime ago, the years before you were born... They have been filled with fun and baseball and drums and wild hair and books and soccer and music and laughter and all sports and history and smiles. Mostly smiles. That is what everyone knows about you: you always have the biggest smile on your face!

This last year, your tenth year, has been another great one: you recently told me it was your best one yet! So I thought maybe we'd make a Top Ten List of the best parts of the last year.

1. Soccer: You played two more seasons, sharpening your skills and becoming a better aggressor on the field. 
 
2. History: You read anything about the Civil War you can get your hands on and you love listening to podcasts about all areas of history. At the end of the school year last year, you won a poster contest for your poster about Benjamin Franklin, which sent your poster to the state level. You went back to the Atlanta History Center for a camp this summer, and you've told me a few times that you may want to be a historian one day. 

3. Ruby: You are a great big brother to her, always thinking about her, playing with her, and supporting her with your Team Ruby shirt at school. 

4. Winshape: You and Drew went back to Winshape camp this summer and you enjoyed five days and nights away from home; can't believe how grown up you are.

5. Golf: As expected, once the Masters rolled around, your interest in golf was rekindled and you watched as much as we'd allow. You even created a golf course in our  front and back yard. You, Grandpa Jim, and some of your friends played it for over a week.

6. Running: You ran your first official 5K this year: you, Ruby and I completed the Gigi's 5K on World Down Syndrome Day. You were steady on the course and you ran the entire thing, even through some really tough hills! 
7. Maturity: So many ways you have shown your maturity this year, Eli. You bring home assignments from school and complete them all on your own with minimal help from us (your safety unit, your Ben Franklin poster, etc.). Your interest in your sister, Ruby, and her cause is showing in your interaction with others. You stood up in front of your entire class and talked about her and Down syndrome and then asked them all to participate in WDSD this year. Amazing. 
8. Swim: You continue to love the summer swim season. Your favorite event is the one all other kids dread, and you smile through every practice and swim meet. 
9. Boundaries: You've earned some freedom with your responsibility in the areas of where you can go without us and how long you can stay. One freedom you seem to love is the ability to ride your (bigger) bike all around the neighborhood, checking in via walkie talkie every once in a while. 

10. Innocence: Sorry, but even as grown up as you seem at times, you are still amazingly innocent when it comes to so many things. (In a very good way!) I love that you still play with legos, and that I find you in your room setting up army men for hours. It warms my heart when you ask for family movie night or a date with mom or dad. From your movie selections to the way you play with your sisters and friends, you are still an amazing kid, and I'm so grateful for that.

Wednesday, August 19, 2015

The Calm Before The Storm

Just four days after Ruby's bone marrow biopsy the first level results came back, confirming the presence of Leukemia in her bone marrow. Even though we expected this, getting these results was a necessary step in the process of confirming her diagnosis.

Speaking of diagnosis, her official one is AML/M7 (Acute Megakaryoblastic Leukemia/M7 Acute Myeloid Leukemia). I can go into a Google explanation for you, but since I only understand half of what I've read, I'll let you do your own research and I'll fill you in after we've had the sit down with the doctor to go over everything in detail. We will meet with Ruby’s 'team’ of doctors next week to go over all questions/concerns we have and discuss the plan for treatment. Assuming we have no new developments between now and then, she will start chemo in two weeks and she is estimated to undergo this treatment for six months.

Good News:
  • God is good. Again and again…can’t say it enough. 
  • Ruby is still well: she's showing no physical symptoms (fever, bleeding, paleness, lethargy).
  • AML is the most common type of Leukemia for kids with Down syndrome. (That means this team of doctors has a lot of experience with it.)
  • Ruby will have a low-dose chemo treatment plan, as that has proven to be the most effective with this type of Leukemia. 
  • Ruby’s blood work, outside of her low platelets, looks good. Even the level of Leukemia in her marrow is low enough to allow for the doctors to allow a little more time for full test results to come back before starting treatment.
  • Kids, especially with Down syndrome, tend to respond very well to this treatment and have a high rate of remission.
As crazy as it seems (at least to me), Lehr and I have remained calm throughout this process, including the news yesterday. Maybe God is allowing us to save our strength and worry for when we will need it, as the diagnosis is only the beginning of this journey. Maybe He has used Ruby's first diagnosis to grow us to handle this type of thing in stride. Or maybe we are just trusting God because it's all we can do.

Tuesday, August 18, 2015

First Day

Ruby started school this morning.

Cannot tell you how cool it is to see that sentence in print!

Starting late last fall I researched and read up on local preschool programs that might take Ruby once she turned two years old. The one I landed on is inexperienced in children with T21, but they were/are very open to including her in their regular classroom. I met with the director last winter, then Ruby and I met with her early in the spring before signing on for a 2 day/week program this fall.
Two weeks ago Ruby and I met with her teachers to answer any questions and let them meet Ruby, then last week we attended the formal Meet-n-Greet with the other kids. Last week's official first day was a no-go for Ruby due to pre-op appointments. But today, oh today, she went into a room with nine other kids (all typical as far as I know) and rocked it. I helped her hang up her bag outside of the classroom, right after we put her cup and diaper in the appropriate bins. Then she walked into the room all by herself (teacher preferred method). It was all I could do to not stay and peek in all morning, but I knew she would be fine. Three short hours later I came back and walked down the hall to find one of the teachers at the door, releasing kids as their parents approached. Before I knew what was happening, Ruby walked right over to me. The teacher said she did great.

Could not be more proud. Could not be more excited. Could not be more hopeful for what this means for Ruby and inclusion in general.

Saturday, August 08, 2015

So What's Up?

So here we are again. Another (almost) diagnosis, but two years more experienced and (hopefully) wiser.
Each year Ruby has a full panel of blood work done. It's one of the many things that is just standard protocol for kids with Down syndrome to help detect anything from celiac disease to ITP (don't even ask me to define it, let alone spell it). After Ruby's tests earlier this summer, one of her nurses called us to schedule a re-test. 

Fast forward to the day of the retest: the nurse came in and told me they needed to run the platelet count again, so she pricked Ruby's finger to draw some blood. Ruby flinched only slightly and then we waited patiently while the blood took a while to pull into the small vile. She put a quick band-aid on Ruby's finger and told me that the test would only take about ten minutes, so she'd be right back with the results. When the nurse walked back in, it was obvious that she never hit it big at Vegas. She quickly told me that our Doctor was not in yet, but that she'd give me a call when she arrived to give me the results. Ruby and I walked out (waving like we were on the red carpet the whole way...they treat her like a celebrity there), and drove to speech therapy.

That drive is about 40 minutes long. Enough time for me to float around in my head a little bit, especially because Ruby was busy reading books. My 'spidey sense', as Lehr calls it, was already honed in on Leukemia. We've had a full CBC and other blood work run twice before for Ruby, but everything has always come back clean. However, one of the things that I've been trained to worry about with Ruby is childhood Leukemia, so pair that with the low platelet count and the wheels were already starting to turn for me. I honestly put it out of my mind during speech; I didn't even bring my phone into the office with me. But when we returned to the car, I was greeted with a voice mail from our pediatrician saying we should expect a call from a hematologist to schedule an appointment.

This is when it became a reality for me. This wasn't my overprotective mind running away with some random symptom....we were going to see a hematologist and oncologist.

The crazy thing is, the very first emotion that washed over me was gratitude. Immense and overwhelming gratitude. For Ruby, for the last two years, for her first steps, for her laugh, for living in Atlanta with doctors that help me remember how to be proactive, for her relationship with her siblings, for her work ethic, for her crooked smile, for the many hours I've been able to spend doing therapy with her, for her joy touching everyone we know. It wasn't a bittersweet gratitude, or a weird preemptive celebration of a life lost....it was pure gratitude just because. I know without a doubt that it was not because I am a strong person or someone who always finds the positive in things either; that was the Holy Spirit in that moment putting blinders on me and pointing me directly at what I should focus on.

There have been tears though, even some within an hour of that reality, but not many. Not nearly as many as I had in the first 48 after Ruby was born. That's another gift Ruby has given me: the ability to process things quickly and get to the 'now what' stage quickly. It's like she has taught us that things are not always as they seem, but even when they get hard (as we know they will), dance your way through it because it's coming regardless.

So where are we now.... We met with the hematologist (two, actually), and they took more blood. Then they ran a quick test AND did a smear to look at some of the actual cells under a microscope. We stayed at the office while they did that, so before we left, they could discuss the results with us. Ruby's platelet count and white blood cell counts were low still, and the doctor did see some concerning things in the actual cells. The next step was to send the blood to another expert to do another smear (that would be the fourth time Ruby's blood was looked at by at least four sets of medical professional eyes within a month). We received those results the next afternoon. The smear did, in fact, show Leukemia cells. Ruby will have a bone marrow biopsy next week to determine the architecture of the cells (?) and to get an official diagnosis and plan for treatment.

Where is the good news?
  • Ruby is a rockstar who defies the odds. Duh. 
  • She isn't sick at all...this is all coming about because of standard blood tests; she has shown no other symptoms so far. 
  • While kids with T21 may be more likely to get leukemia, they also respond very well to treatment.
  • The percentage of cells that Ruby has showing the leukemia is low. Not low enough to ignore, but still low.
Finally, the best news of all. God is good. I mean that wholeheartedly. Lehr and I have been very at peace through this whole thing. Even in my moments of weakness, I have never felt despair or like I was alone. My moments of weakness have come from the place of grieving my expectation. A mid-life issue of 'entitlement', if you will. ("But she's supposed to go to preschool this fall and skyrocket to the head of her class", "But I didn't have chemo on my schedule for September". "But this wasn't part of my plan").

God is walking us through this and I know He has great plans for this next stage.We sent this information out to our amazing friends, family, and prayer warriors and Lehr put it best:
We are all in a good place and know a few things. 1) God is good. No resentment, anger, or 'why us' here. 2) Ruby only knows one gear: and that's to kick ass and she plans to keep doing just that. Her words not mine. 
 

Tuesday, August 04, 2015

First Day of School

The kids love summer, but they love school as well. They didn't talk too much about it until our Meet-n-Greet last week. From that point on, Eli and Maddux have been very excited/anxious to return. Maddux was assigned the same teacher Eli had for 3rd Grade and Eli was placed with a teacher that I think will be a great fit for him.
Our first day at the bus stop picture has changed so much over the last few years, but this one is at the max: next year we will start to lose our elementary friends, starting with Eli.

Friday, July 24, 2015

Therapy Update

Ruby has NOT taken the summer off. Some weeks have even found this girl with four seperate therapy appointments (plus her work at home). She is a rockstar!
Physical Therapy:
We don't need this therapy as critically now that she's walking, but we are still working to strengthen Ruby's core with rotation exercises. (She will sit between my legs on the floor and I'll have toys on either side of her that she needs to transfer across her body, sometimes leaning, sometimes not.) We also strengthen her trunk and arms with monkey bar-like grabs and holds (using a broom stick). For the same reason, we have some soft weights that Ruby moves around the downstairs: from couch to couch, from floor to table. She really loves this! Finally, we are still working on her walking over obstacles (small ones like bumps or sidewalk cracks, She usually doesn't want to slow down to step over these things, but the good news about that is that she is learning how to deal with the uneven surface(s) without falling.

Speech:
Rock and roll. Some days she gives us oh-so many word approximations. Some are recognizable just to me, but many are recognized by others even without my presence. Ruby is working on and can mostly say: eat, more, I did it, mama, dada, eggs, book, yes, i love you (you'd have to really pay attention for that one), I want, please. She makes animal sounds for a cow, dog, pig, monkey.....and Daddy snoring.
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