Team Captain

Today was another amazing opportunity day. Usually opportunities for Ruby means opportunities for our family too. That was definitely the case today!

When Ruby was living in the hospital, she and I would make a trip down to the garden area every morning (and usually every afternoon too!). We were such regular visitors that a woman (Amy) who worked in one of the ground level offices overlooking the area came out to introduce herself one morning about a month in because she'd seen us out there every day. We've kept in loose online contact over the years, even when Amy started working for the stadium instead of the hospital.

As September is Childhood Cancer Awareness month, there are 'gold' events at sports arenas all over the place right now. Our friend, Amy, contacted us a few weeks ago about attending a soccer game where they planned to gather families from all over Atlanta that have been affected by childhood cancer to form a gold ribbon on the field before kickoff. Unfortunately we couldn't attend. But a few days after I turned the offer down, Amy reached out to me again to ask if Ruby would be interested in being honorary Team Captain for Atlanta United for a game the following week. WOW!! This meant that all five of us could attend the game and Ruby and a parent would take the field for the national anthem.

This resulted in Ruby and I hanging out on the sidelines at Mercedes Benz stadium even before Atlanta United came out to warm up. Then, when they warmed up, the woman escorting us was made aware of a few extra field passes, and she asked if I thought the rest of our family would want to come down to the field too. Eli couldn't get down to us fast enough!

So we all watched the team warm up, and a few players came over to say hi (Eli's mind was blown!). Then, just before the team was about to be announced, Ruby went to the locker room entrance with our escort so that they could lead the team through the tunnel and onto the field. Ruby did SO great, grabbing the ball at the right time and standing so attentively on the field. She did not walk out like we planned (the escort carried her), but everything else was flawless. 

As soon as she exited the field, we were ushered out of the field area and back into general population. We found our seats and enjoyed the game. Both teams scored pretty quickly, but it was still a tie going into the 90th minute of the game. When Atlanta United scored the winning goal, the place went bonkers, including Ruby!

Give Kids The World Village

This could be a very long post. The Make-A-Wish trip we were afforded last month was amazing and it was only in part due to the cool experiences the kids got at the theme parks. Our lodging was at Give Kids The World Village, and to say it was awesome just isn't enough. (Though Eli said that about 200 times!)

To start with, here is some background. When you take a Disney trip through Make-A-Wish, you don't stay on Disney property, but rather this amazing village, just down the street. Give Kids The World Village is a 79-acre, nonprofit resort (coolest, most kid-friendly resort ever!) that provides weeklong, cost-free vacations to children with life-threatening illnesses and their families. And when they say cost-free, they mean it. There is nothing you will pay for while at the village: food, entertainment, lodging...nothing.

The first night we drove in to see the above sign and this building. A volunteer came out to our car and directed us to follow her golf cart to our villa. (The villa was huge: two bedrooms, a kitchen, sitting room with TV, washer/dryer, and two bathrooms. The 'master' bath was in the kids' room and had a walk-in shower, two sinks and a jacuzzi tub!)

She let us in, showed us around, gave us dinner (it was 9:30PM but they knew we'd been flying during dinner time) and then sat down with me for a 30 minute 'orientation' while Lehr and the kids got settled in. At this time she gave me all of our tickets and buttons for the parks (along with verbal and written instructions), she gave me the rundown of the village amenities, maps, and answered any questions I might have not thought to ask. Plus we got a guidebook covering anything she said that I may forget (there was a LOT to remember!), and told me to call the desk when I needed a verbal reminder.

The next morning we got to try out some of the services available to us. We rode on a carousel (as many times as we wanted with no line), called for a ride to breakfast (golf-cart style, but extra long), walked into a free breakfast buffet (complete with volunteers standing around waiting for you to arrive so they can walk beside you, carrying your tray as you choose your food), and beautiful grounds to walk around in.

When we returned from Sea World that afternoon, we ate a free dinner (same set up as breakfast), played in a game room with interactive train sets, arcade games, pool and ping pong and 4 gaming systems and plenty of games, rode on more carnival type rides including a train that travels through part of the property, and we ended up at the Castle of Miracles. Every Wish Child that visits the Village gets to decorate their own star and go through the process of sending it to a star fairy who will place it in the Castle to remain forever. The next day, we were able to go back and visit Ruby's star, as the location was given to us (along with a souvenir star to take home). Ruby's star is in the blue room pictured below.

 In the Castle of Miracles there is also a spa where the kids could get airbrush tattoos, face painting, make-up or manicures. During our trip, Maddux got everything done at one time or another, and Ruby got one airbrushed tattoo.

Oh, and we finished the night up with ice cream. Because there is an ice cream parlor in the center of the Village that serves ice cream from 7:30AM (what?) until 9:30PM. We hit that thing at least once each day, and yes, we did have ice cream with breakfast one day.

The two other areas that I need to mention are the incredible playground and the pool. The playground is Candy Land themed and so so fun. Everything is bright and colorful and covered from direct sunlight. The big kids loved running around in there as much as Ruby did.

And the pool. The pool area was SO cool. Pictures don't do it justice. It is a zero entry heated pool that I think topped out at 4 feet. Several side areas so it never felt crowded. Beautiful landscape all around to make you feel very relaxed and 'tropical'. There are towels and refreshments available to you, courtesy of the volunteers, of course. And then right next to the pool is a HUGE splash pad that Ruby ran around in for close to an hour during her first visit. So many fun interactive parts to that. Just behind the splash pad is a really cool pirate ship that we're told is for shows/stages. I assume it is used during the Pool Party (we missed it while we were at Epcot).

 

Other things we got to take advantage of include movies in the theater (Maddux and I went to see Toy Story),

Horseback riding,

the incredible weekly Halloween Party,

Character Meeting,

and Village Idol.

The grounds are beautiful, and we missed out on a few things: fishing, mini-golf, the tuck-in service by the Village mayor (a bunny character comes to your villa and reads you a bedtime story), some of the cool night events...but the things we got to do will remain in the kids' memory forever. (And if not, there are photographers at all of the 'main' things taking photos for you that they put on a disc before you leave.) This village is amazing.

There are no details left out; every surface, every experience, is designed to bring joy. The Village sneaks gifts into your villa every day for the kids, like a secret Santa. They knew we went to Sea World, so one day the girls got 'Barbie Doll' Animal Trainers with a Killer Whale. Another day they got legos and a Candyland game. There are volunteers tripping over themselves to serve you at every corner. And everything is wheelchair accessible and kid-friendly. The tables are low, the chairs are small, the doorways are wide, the rides have lifts...it's amazing.

And because they are aiming to 'give kids the world', they make the village so fun, so full of entertainment that even if the child's condition is one that prevents going to the parks, you could stay just in the Village all day and be totally happy. (We were sad we couldn't have spent more time there!) Here are a few (not even all!) of the events that happen every week  at the Village:

• Life-Sized Family Candy Land game
• Animal Encounters
• Halloween Party (they let you trick-or treat, they had a balloon manipulator, crafts, music, games!)
• Mayor Clayton's Birthday Party
• Winter Wonderland (complete with a visit from Santa and gifts...that was the night we left :(
• Village Party on the Pirate Ship
• Teen Activity Nights
• Family Game Show
• Storytime
• Pool Party

The list goes on...seriously. And in addition to this there is a breakfast/coffee cart driving around each morning, a cookie/milk cart at night, food delivery to your villa if you don't wan tot eat in the main dining hall, random puppets or art displays or people with telescopes or ANYTHING you can think of placed around property for you to find as you wander around. When the kids get a little older, I was to apply to volunteer there. Every day they log 1700 volunteer hours. All for the love of these families.

Pirate & Princess Ball

Ruby has received many gifts, honors and recognition in the last 18 months because of her battle with cancer. Lehr and I are always humbled and usually feel awkward accepting any of these because it all seems too generous or unnecessary or something. But when I step back and view it from the outside - when I see someone else going through something similar - I want to give the same praise, love, recognition, so we try to be as gracious as possible.

Last night Ruby was one of eight honored guests at the Pirate & Princess Ball, benefiting Team in Training (Leukemia and Lymphoma Society). That meant that she and her family were invited to attend the event for free and be recognized 'on stage' with a gift basket. Lehr and Maddux had other obligations, so Eli, Ruby and I represented. 

I was a little apprehensive about the evening, given it's later start time (7PM) and the fact that I may be chasing Ruby around and wrangling her all night, in heels, but the Ball held a secret weapon unbeknownst to us: Princesses. Shortly after we arrived, Belle and Cinderella showed up and Ruby was mesmerized. She never let them out of her sight all night, and her greeting them for the first time was SO cool. She was humble and quiet - like she was greeting royalty or something. Once the ice was broken, she still gave them mad respect, but she danced and walked and held hands until we left just before 10PM.

When they called Ruby up, she ran through the aisle to the director and even grabbed the mic. No stage fright there! Ruby's former physical therapist was in attendance and was so kind to grab this video of the stunner on stage.

Clowning Around

I had the unusual opportunity to photograph some clowns last week. While Ruby was in the hospital last year, we were entertained several times by Atlanta Clown Care.

 Ruby absolutely loved the clowns, and I loved taking pictures of their interactions.

The organization used some of my photos on their page, so they had my contact info. About a month ago they called me to request more 'official' photos. The Atlanta branch is starting a new venture (same 'service', different name) and can't use any of their old promotion stuff.

When the clowns visit kids in the hospital, they entertain and leave them with what I would call trading cards. They are small cards that contain a photo and the clowns name and a few 'fun facts'. All of that must be redone for for this new company, so they were in need of a photographer.

I was happy to oblige; the service they provide hospitals and patients is one that is very valuable in my eyes. Once we confirmed the date and time, my clown contact begged me to bring Ruby along. And when I told her that I never bring my kids because they would likely distract me, she assured me that with about ten clowns around, Ruby would be plenty distracted herself and it would not be a problem.

So my sidekick and I packed up for the afternoon and drove south. Ruby was smitten with all of the make up, the clothes, the music, the heart and soul. She kept throwing one of the juggling balls with one clown, then sitting and listening to another play guitar, then laughing at the antics of yet another.

As we were finishing, they asked for Ruby to be in a few photos as well. She hopped in and acted like a total pro: seriously, I didn't have to place her or guide her or anything... First photo shoot with Ruby was a total success!

In The Clear

Another monthly check-up for Ruby at the AFLAC Cancer Center, and another clean bill of health. This one was a milestone visit as it marks 6-months, and with it comes two great changes for Ruby. No more meds on the weekends! (She doesn't mind taking them anymore, but anything we can do to distance ourselves from cancer is welcomed!) Also, we no longer have to go in every month; now we are on an every other month cycle.

Hooray for continued health!

Radio Head(s)

We were contacted several months back about speaking on the radio during a fundraiser for the Aflac Cancer Center (where Ruby stayed during her chemotherapy and where we visit monthly for appointments now). As scary as that sounded, I passed up an opportunity to do that during one of our longer stays at the hospital, and I regretted it, so I told the Care-A-Thon team "yes".

I put the date on the calendar, but didn't give it much thought because it was so far away. Then the team contacted us a few times in the last week to firm up details and verify our attendance. Last night I thought through some of the potential things that would come up in our conversation (we did not have a list of questions or topics to be prepared for), and I tried to prepare for how I would respond.

Before we even walked into the building we ran into a friend. Her son and Ruby play at Gigi's and we have been so blessed to get to know them in the last three years. That helped calm me a little, but then when we checked in, we found out that we would be slightly delayed from our original time. Enter nerves again!  So Ruby kept herself busy in the infusion clinic...a place that I honestly loathed visiting during our treatment. A much easier/more pleasant visit today!

After about 30 minutes of play, they came and got us. As you might imagine, I didn't say half of what I prepared. The 'interview' went so fast and I wasn't able to process when he ('he' being Herman Cain) would ask something else or break in, so what ended up on-air was not any of the planned stuff. Such is life!

Here is the interview.

And here's what I planned to say:
When asked about the moment of Ruby's diagnosis, I planned to say that it wasn't hard. Ruby's diagnosis at birth was hard, because of our ignorance to T21. God used that initial diagnosis to make everything else that we've faced since then 'no big deal'. We had some tears, but God used Ruby's cancer to show us just how strong and capable this girl is, because her first diagnosis found us fearing she would not be either strong or capable. Cancer is shocking, but it's all relative, and we were blessed to not be blindsided by it because we already knew that kids with Down syndrome are more likely to get leukemia than other kids. That being said, we are so blessed that our pediatrician insisted on routine blood tests because even after Ruby was diagnosed, she wasn't symptomatic, so without that test, she could have gotten much sicker before we started treating her.

When asked about how our time at Aflac was, I planned to say that it was surprisingly ok. When you think about living in a hospital, it can be scary, but the reality was pretty 'normal'. You get into a routine and start thinking about your room as your living quarters and you just make the best of it. Ruby and I would have several things we'd do each day to keep us busy. After we had breakfast and did speech exercises, we'd walk the floor (or if we weren't hooked up, the hospital). We'd visit the garden or the playground and then come back for rounds. Then we'd repeat that cycle a few times during the day. The lunches delivered by Cure for the families on the AFLAC unit each week were a welcomed change from whatever combination of hospital food and snack bars I had. And the several times a week opportunities to dance and sing with the guys at Songs For Kids were therapy for me as much as for Ruby. Atlanta Clown Care made Ruby smile every time she saw them. And that's not even mentioning the volunteer readers and therapy dogs and the countless nurses and other CHOA and AFLAC staff that we encountered each day that helped us keep a smile on our faces.

When asked about how our family dealt with Ruby's cancer, I planned to say that it was hard. It was hard living in the hospital for most of 7 months. It was hard to miss Eli's last year in elementary school. It was hard to miss soccer games and field trips and other 'big kid' things that Maddux and Eli were involved in. And it was hard to live apart for our family. Ruby's first month included several visits at the hospital, but after that, we were in flu season, so the kids couldn't come to the hospital.

But we were so fortunate that this happened in the age of technology where the kids could see Ruby on Facetime each night, and Lehr and I could see each other over breakfast each morning. And we were incredibly grateful for the friends that took care of our older kids while I was living at AFLAC with Ruby. So many people stepped up in so many amazing ways...we couldn't have done it without them. And the big kids got to attend Camp Sunshine for a sibling camp, and they got to spend more one-on-one time with each Lehr and I as we traded off, so there were silver linings everywhere for them too.

When asked how Ruby is now, I planned to say that she is stronger than ever. God used Ruby's cancer and our time at the hospital to pull us closer to Him and remind us that He has us. Ruby has completed her treatment and is back to being a toddler who runs and yells and gets into everything.

So I didn't say half of that, but Ruby charmed the room, and she babbled on-air, and Lehr and I hopefully got to pass along a success story related to a place that doesn't always get to celebrate those.

Sick

Oye...It's crazy. Ruby has been consistently sicker this week than when she was going through chemo. How is that possible? (Actually, parents of kids who have fought cancer would not be surprised.)

Ruby has been on and off congested a lot this spring, due to pollen/allergies. At one point they worried she would develop an ear infection, so they gave her antibiotics (April). This week, she ran two random fevers that went away with one dose of Tylenol, not to return until the following day at fever o'clock (that's 5PM). After two days in a row of that, coupled with her sleeping in (unlike Ruby), I took her to her pediatrician's office Thursday morning. They confirmed that her lungs sounded fine, and her ears were clear, but with the blood tinged nose-mucus and puffy eyes, they suspected a sinus infection.

So now she's been on an antibiotic for exactly 48 hours, but it's not helping yet. Poor girl had a fever again Thursday night that took a long time to break, and she had the crazy chills/shivers at one point. Friday morning she slept in (again..third day in a row), and her poor eyes were puffy from tearing up all night. The good news is, they aren't pink-eye looking (infected), and she doesn't appear to be getting worse.

I did call the pediatrician again yesterday to inquire if we should come back in. They assured me that she needed a few days of antibiotics under her belt to see an improvement. If she is still not turning around by Monday, come in. Her energy is down, but she has spurts through the day where she acts fine, plays like her usual self, and (until yesterday around noon), ate at least as well as usual.

This feels all kinds of crazy...Ruby's already been sick a few times since her short time of being in remission. Her immune system numbers have always registered in the 'good' range since we were released, but during this allergy season, she's had to be on an antibiotic twice. My NOT-medically-educated self tells me that the overload of mucus from pollen season is overloading her system with yuck, helping things to develop into infections. That doesn't help us as we watch our poor girl with puffy eyes so miserable. And here's the thing, even though she sailed through chemo, and even though she is amazingly strong, what she's been through has messed  with her immune system and it's ability to react efficiently and 'normally'. So for our girl, I guess it's still not over.

Bittersweet

Romans 5:1-5  Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. ³ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

I have a feeling that 'bittersweet' is going to be the true north emotion for many milestones to come.

Today marks three weeks. Three whole weeks since the last time Ruby was in a hospital bed. (That is lifetimes longer than any other home stay we've had since last summer.) Three whole weeks since Ruby had her central line taken out, adding a much needed step in the direction of what her life was before leukemia. Three whole weeks that have included preschool and baths and public play spaces and almost nothing medical.

But this amazing three weeks is also a harsh reminder of the difference between Ruby and so many other kids with cancer. Our time at home has included the passing of one child that was on the cancer unit with us. These three weeks have found another little boy who shared the AFLAC nurses and doctors with us on a few occasions back in the hospital again at least twice, this most recent time with infections that are giving him a fight bigger than his body seems able to handle.

So there is the bittersweet part: the part that makes it difficult to celebrate Ruby's remission. I've never met a parent going through an illness that doesn't rejoice in the health of others, that doesn't cheer on healing. But I have to think it's hard to see someone else's child get through treatments without much pause, only to move on with life when yours is still in the throws of the hardest moments you could ever have imagined. I can't even wrap my brain around what it feels like to make decisions no parent should ever have to make. It absolutely breaks me to think about the conversations that must be had. Between spouses, with the sick child, with other children... Anything we've faced pales in comparison to that type of suffering.

So I go back to these verses. 'Glory in our sufferings because we know that suffering produces perseverance, character, and hope'. I do not think God chose for Ruby to get leukemia or Grant to get neuroblastoma. No more than I think He chose for Ruby to be healed as anticipated and Grant to still be fighting. So I can only rest in this truth: God is with them both. He will use any suffering to shape the character of those involved; He will use the suffering to foster a home for hope.

And He will heal both Ruby and Grant; whether on this earth or in heaven remains to be seen.

I have to believe that because it feels crazy to celebrate three weeks of 'nothing' when that three weeks held so many life changing moments for so many others.

The Jersey

So yesterday's game was a good one for another reason, totally unrelated to Eli. His coach asked me about a week ago if he could get ahold of the file for Ruby's 'logo' to do something with the boys. I obliged and he showed up to the game today with stickers for the boys' helmets.

He talked briefly before handing them out about how we are honoring Wyatt (a boy in the league who is battling cancer) with a patch on their uniforms, and how they have another hero on the team: Eli's sister. The boys all slapped the stickers on their helmets immediately and started trying to give her high-fives. She loved it. The coach and team mom also got Ruby a jersey with her name on it and Eli's number (#1).

Amazing.

The boys called her their cheerleader, their mascot, and their 'bat girl'. She couldn't stop looking at her shirt and pointing to it.

Brave The Shave

Such a cool event.

A few weeks ago I wrote about Brave The Shave. Since then, Eli, Lehr and Aunt Megan signed up to shave their heads as a way to raise funds for childhood cancer research. Then a friend of ours, Owen, (who is only 8 years old, by the way), signed up to do the same. Between Owen and the other boy who started this off (Griffin), we were so humbled to have kids outside of our family want to participate in Ruby's name.

And then my parents caught wind of it and shared the story with my grandmother. She asked if she could participate.

You heard me: Ruby's GREAT GRANDMOTHER wanted to shave her head in honor of Ruby.

GG doesn't live near us, so she shaved and had the hairdresser take a photo. She even raised funds to contribute! Combined, Team Ruby raised $2,150 before the day of the event. This included some cash that kids brought to Eli at church. Already, so exciting.

Then the day of the event, we got a few texts and emails from friends that were going to try to stop by and see the shaving happen. We arrived at 2PM and things started immediately. I was able to photograph the event, so that gave me a good front seat to the shaving action. But the stuff happening in the crowd (we were on the outside patio) and in the bar was so cool too. Maddux and some other volunteers went around with buckets asking for donations. And of course they got them. They also got some patrons to shave on the spot! A few random guys, two firefighters, and a handful of boys hopped in the chair last minute.

Ruby had a BLAST seeing friends and family there, and once she saw the first guy get his head shaved, she started walking around to everyone pointing to her head and then pointing to theirs (as if to say, "You're next?".) I still can't believe the amount of friends that showed up to support...so so cool.

Eli and Lehr shaved, then Aunt Megan shaved (she went all of the way to the scalp - no messing around!), then some friends from church (father and son) shaved on the spot, then Owen and Griffin shaved. And then Eli's best friend, Drew, asked if he could. This guy showed up to support Eli inbetween his busy weekend activities, and has never had a haircut short enough to even be called 'short'. But there he was, shaving his head "because Ruby asked me to".

There was a barbershop quartet (that sang to Ruby at some point), barbershop hairdressers that were all so awesome to volunteer their day for us (and they yucked it up with Ruby too), another boy battling cancer with his dad who got shaved, and enough warm fuzzies to last a long time. People are good. Community is good.