Yesterday was the final day of Maddie's scheduled chemo. Nine weeks of treatment, 21 treatments in all. In the last two months, Maddie has taken more medications than we can count, lost her hair, thrown up a ton, and slept during daylight hours on the regular. BUT...she's also not lost any weight, maintained her blood cell counts (no transfusions), taken charge of her care, and generally kept her spirits up. Best of all, her AFP count--which is the germ cell tumor cancer marker we track--was down to 13.3 last Monday. Normal is single digits, so Dr. Horn was feeling very optimistic for this week's bloodwork, which we should have the results of later today.
Next steps for Maddie: Wednesday morning at 9:00 she will go in for another round of contrast CT scans. While the blood counts matter, they want to have a visual as well. We are praying for her scans to be clear. If they see anything concerning, Maddie may have to have 'second look' surgery to further investigate. However, Dr. Horn is hopeful that won't be necessary. So, we wait to celebrate until we get those results on Thursday afternoon.
I've included a photo of the team at Kaiser's pediatric oncology unit. These women are true angels on earth. The first day we walked in there, we got a hug before Maddie even got her vitals measured. They've laughed and cried with us the whole way through, and been the best team of caregivers I've ever encountered. We have a whole new family there; I can't say enough good things about Kaiser and the care that Maddie (and the entire Elias crew) has received.
In the meantime, Maddie is starting to resume her 'normal life' and work on rebuilding her strength and stamina. Last week, she returned to Xcelerate for speed/agility/strength work with Coach Josh. And on Sunday, she was back in her cleats again doing the better part of a 3 hour practice with Coach Suzy and her Glory teammates. (photo below) While she had to pace herself to make sure she didn't run out of gas, she was strong enough to do the vast majority of the hitting and defensive drills. I can't tell you how amazing it was to see Maddie looking like Maddie again.
School starts for her on Thursday, and we're hoping that she'll return to that with minimal issues. A huge thank you to Mr. Smith, her counselor at Valley, who reworked her schedule this morning to balance her hard classes across her schedule, and to put her most challenging work in the morning before the day can sap her energy. Incredibly grateful for his help in setting Maddie up for success for her sophomore year. 🙌
So, we'll keep you posted this week as we learn more. Thanks for the continued prayers and support!
Much love, Heather, Mike, Maddie, Erika, Wil, and Natalie
Since the last update (has it really only been 10 days?!) Madeline flew out to California and got swallowed up by softball love--so many teams sporting #tealfor2 bracelets, so many hugs from coaches. She also got some quality time with family and some beach time as well--Laguna AND Huntington. After three whirlwind days, Erika and Maddie flew back to Virginia so that she could rest up over the weekend before starting this week's treatment.
On Monday, Maddie was given two huge boosts of love to help propel her through the week: Jen Schroeder, a nationally recognized catching coach (and former UCLA Bruin) who has worked with Maddie multiple times, sent her a video cheering her on and sending tons of love. Shortly after that, Maddie received a video from the Florida State softball team, the 2018 National Champions, who all sent encouraging photos and video messages to lift her up with love and prayer. Such a powerful thing to know she has so many people in her corner! A huge thank you to Jen for her message, and for Coach Lonnie and the Seminole softball team for their support as well. We are so grateful!
As of today, Madeline finished the first week of her third cycle, all five days of it. We got the best possible news early in the week: her alpha fetoprotein number was down to 26! Normal range is single digits--Maddie's was at 24,0000 pre-surgery but had dropped to 8,000 by the time she started chemo. So the expectation is that when they do a blood draw next week, she'll have normal looking numbers. 🙌 She has two short Monday treatments left, on the 13th and the 20th, before school starts again on the 23rd. Best part: she is still feeling GREAT!
We are working on a celebration party at a local restaurant after Maddie finishes her last infusion, so stand by for more information on that. The evening's festivities will raise money for the children being treated in the pediatric units of Kaiser DC, and Maddie is passionate about helping other kids going through this who don't have the resources and support that she has. Stay tuned, we'll keep you posted so you can come and celebrate with us.
We remain grateful to all of you for your support and love through this. One of the nurses said today that the process is 75% treatment and 25% attitude/outlook, and you've all helped Maddie to nail the part that she had control over.
Much love to you all, Heather, Mike, Maddie, Wil, Erika, and Natalie
It's been a little while since our last update, mostly because Madeline has continued to feel great and because everything is going so well. As I type this, she's finishing up her second round of chemo! Last week, she had an appointment with her surgeon, who gave her the all clear for 'as much physical activity as she feels up for." She was in the cage taking a few swings that evening. 😊
We have been extremely fortunate with the team of doctors and nurses that have taken care of Maddie along the way. Dr. Horn looked at us sideways when we told her that Maddie very much wanted to come to California for the PGF National Championships--she is supposed to be here playing with her team; they arrived on Saturday and started play yesterday. After monitoring Maddie's bloodwork and making contact with a Kaiser facility in California, just in case, Maddie was given the all clear to fly out here for a few days!
The #tealfor2 #teammaddie effort is already in effect here, with bracelets that are being given to all the teams that the Glory is playing. It will be WONDERFUL for her to be in the dugout here with her teammates. Maddie will land tomorrow morning, and we are so excited that she will still be able to have part of her California trip.
Thank you to all for the continued prayers and well wishes! Heather, Mike, Maddie, Wil, Erika, and Natalie
p.s. We have a ton of the bracelets, so just let us know if you would like to have one!
So we haven't put an update here for a little bit because there wasn't much to update! Maddie has been rocking along, doing great, feeling great, and we've been watching her markers go down steadily to the point where they are miniscule. Things are moving in exactly the right direction!
This past Monday, she started her 2nd 3 week cycle--meaning this week is a five day week. On Sunday, her hair started to float away, a few strands at a time, which turned into a cascade by Monday evening. Yesterday, she decided it was time to take matters into her own hands, so today she is bald and beautiful!
For those of you that haven't heard her play before, Maddie has been playing guitar for 5 years now, and she wants to study audio engineering in college. Our friends in the real estate community put together a GoFundMe to set her up with the right equipment to make her own music. Last Saturday, Maddie went shopping for the laptop to power things, and an acoustic electric guitar that she could plug into it. A huge thank you to all of you that contributed to the fund to grant that wish to her! (And for the record, Melodee Music in Sterling has amazing staff and a gorgeous acoustic guitar showroom.) Hopefully she'll let me post some of her music soon!
Thank you, thank you, thank you for the continued support and love.
I'm not usually at a loss for words, especially when I have the luxury of being able to write them down. But I've started this update several times since Saturday and have struggled to convey what it meant to Madeline and our family. This is the 3rd year (I think) that the Glory organization has put on this tournament to benefit Children's Hospital, but obviously it's the first time for it to mean quite so much to our family.
The manner in which Maddie has been embraced by the softball community both near and far since her diagnosis is absolutely amazing. The cards, messages, gifts, hugs, and outreach have kept her wrapped up in love and support for a month now. There are something like 450-500 Team Maddie teeshirts out there now, and we're seeing them pop up in photos all over the world. But to see it live and in person? That was something entirely different.
When Maddie got to the fields on Saturday, every Glory team in sight was wearing a Teal for 2 special uniform for her. There were ribbons on the fence, banners with her name, and Team Maddie teeshirts on spectators everywhere we looked. It was all of that support, right in front of her to see and soak up. So many teams brought gifts, donated money in her name, and gave hugs freely to her and all of us. She came to the field at 8:30 to be in the dugout with her team, stayed the whole day and finished in the dugout with Natalie's team at the end of their 4 pm game. She made it through most of Sunday too, with some piggyback help from Dad between the upper and lower fields. Trust me, she was speechless at the #Tealfor2 display and so excited at the impact this will have for other kids being treated at Children's Hospital.
Thank you, thank you, thank you.As of now, Maddie's GoFundMe has raised just over $3,200, and that doesn't count the significant donations that several teams made at the tournament. We are so proud that something good can come of Maddie's struggle-- we appreciate everyone's support way more than we could ever say.
This site only allows five photos to be attached to a post, and that just wouldn't do justice to convey how Saturday looked and felt for Maddie. So please take a look at the photo gallery we put together, linked below. And if you have photos we could add to it, please send them to me at email@example.com. 😊
Thank you so much to the Glory organization, including our Midwest teams, for making this tournament happen and for allowing it to be so special for Maddie. And thank you to all of the other teams, from near and far, that are sporting the teal and supporting Maddie in her fight. We love every photo, message, and video you send!
With gratitude, Heather, Mike, Maddie, and the family
And so is Maddie. After a really rough day and evening on Tuesday, the antibiotics and extra fluids seemed to do the trick. Maddie felt worlds better yesterday and today--and she definitely got a boost from the carload of teammates that showed up to visit, gossip, and love on her for a bit today. 😊
It's wonderful to see her looking like herself again; I don't think anyone realized how badly she was feeling with that tumor until it was gone! Thank you to everyone who has sent messages to cheer her up.
Yesterday we were really happy to start our day at home, and Maddie had been feeling *great* the night before. It was apparent after she woke up, though, that skipping the anti-nausea pill before bed (because she wasn't nauseous) was a mistake. By the time we got to the doctor's office for treatment at 11:30, it had gotten the best of her and she was throwing up, and running a low grade fever.
The rest of the afternoon was spent getting the nausea back under control with meds, and rehydrating her. She did get her week 2 treatment (a single infusion) in the midst of it. We came home around dinnertime and she was feeling good enough to chow down on a spaghetti and meatballs dinner from Zabar's (thank you Greer family!).
Despite doing a great job hydrating, eating, and taking her meds, the fever started creeping back around 10 pm and we had to take her back to urgent care. Antibiotics, more fluids, back home around 3:30 am. She says she feels much better this morning. Fingers crossed.
She'll go back tonight to see if they want to give her more antibiotics. For those of you unfamiliar, fever, even low grade, is not what we want to see while she's going through chemo, because of her compromised immune system. It's the first sign of her body fighting something off, so we have to get her to the ER right away to help knock down whatever is going on.
Thankfully, besides the check in tonight, she has no other appointments until Monday morning, so she can chill out and relax for a few days. Maddie is pretty exhausted from all of it-- surgery, IVs, middle of the night blood draws, medicine, chemo, a parade of doctors and appointments. Forgive us if we cocoon from the outside world a bit this week and try to get some rest.
Maddie is still herself--strong willed, kind, and in great spirits. If she lets me take a photo of her I'll come back and post one so you can see she's okay. 😊 In the meantime, thank you for all the prayers, gifts, and well wishes. We appreciate you all so much!
This morning, I'm writing this from the comfort of my home office, with a big mug of coffee and some serious peace and quiet around me. I can't tell you how wonderful it felt to wake up in my own bed today after five nights at Children's Hospital. Maddie is still crashed out and I intend to leave her there as late as possible!
To recap the last few days, Maddie did her first week of chemo as an inpatient at Children's Hospital in DC. She'll do the rest of them outpatient at the Kaiser pediatric oncology unit in DC, but their office is closed for July 4th and they wanted Maddie to get started right away. The team at Children's took great care of her, and did their best to make it not feel like a hospital stay--she could wear her own pjs, wander the floor as she wanted, eat what she wanted, etc. However, they still came to draw blood every day, woke her up to pee every 3 hours overnight, and stopped in to take vitals on the regular.
Maddie tolerated the five days of chemo very, very well. Her appetite seems to be coming back, and she really had very little nausea at all. The fatigue has not been bad, and to be honest we are happily surprised by how wonderful she's doing so far. Yesterday, we went to see her oncologist after she was discharged and they taught me how to give her a shot that will boost her white blood cell production. (Can't say 'learn how to administer a shot' was on my bucket list--but I did fine!) Learning new things every day.
Today she heads back to DC for her week two infusion: this one is just one drug, and takes 15 minutes to infuse. Then, she's 'off' until next Monday, when she has another 15 minute infusion again. For the next two weeks, she'll be working on good nutrition and hydration, and getting back into some activity.
Maddie is planning to slather on some sunscreen and sit in the shade to watch her team play this weekend at Wakefield Park in Annandale in our own Glory tournament. The Glory softball organization holds an annual softball tournament that actually benefits Children's National Hospital in DC. Both Madeline and Natalie play for Glory teams, and Michael and I both coach within the organization. We've played in and helped with this tournament in the past. The tournament is this weekend, July 7th and 8th.
Obviously this hits so much closer to home now. Maddie has asked that since so many people have reached out wanting to help us, if we could harness that to benefit the many kids that are fighting a cancer battle that don't have the resources and support that we do. The Glory organization has set up a Go Fund Me in Maddie's name that will benefit the pediatric oncology department at Children's Hospital. We'd love to be able to make a difference for all of the kids that have to make that wing their temporary home.
Being part of a big family can be a little insane sometimes. Having four kids in the house means a lot of noise, a lot of mess, but also a lot of love--when they aren't picking on each other. Today, the rest of the brood descended on Maddie's hospital room, and she completely lit up. When the four of them are together, they make a pretty amazing pack.
Natalie, Erika, and Wil took turns cuddling with her while the first infusion of the day continued. As soon as the 2nd infusion started, which doesn't require blood pressure monitoring, the four of them took off, IV pole in tow, to the teen room. She proceeded to whip them in Mario Kart, too. (She beat her dad yesterday.) Definitely made this momma happy!
With the 3rd set of infusions finished, she's a little tired but still doing well. Two more days and then a one day break before her single day week 2 treatment.
It's hard to believe that we are sharing this story when Maddie was still on the softball field last week, playing in the Virginia state quarterfinals. Although anyone that knows her could tell that she wasn't herself in the last few games--unable to run, easily tired, and generally uncomfortable. That's what prompted the visit to urgent care on the 6th.
That visit lead to x-rays, blood tests, a contrast CT scan, more blood tests, and the discovery of a tumor in her pelvis the size of a honeydew melon. (No wonder she couldn't run, eh?) Today, the oncologist confirmed that Maddie has ovarian cancer. Without diving too deep into the details, it's a germ cell tumor, and it needs to come out right away.
Maddie is scheduled for surgery on Monday morning at Virginia Hospital Center in Arlington. Once we get through that, she'll have a 4-6 week recovery as the incision heals. The pathology reports from the surgery will tell us whether she'll need chemotherapy as well. We don't know a lot yet, but we do know that we'd love all of the prayers and good vibes that you can spare. As soon as we know more, I will share it here.
Thanks in advance for your love and support, Heather
On June 5th, Maddie was still on the softball field with the Loudoun Valley varsity team, competing in the state quarterfinals and leading her team in batting average. On June 6th, Maddie was being seen at urgent care because she just wasn't feeling well; what we thought was a minor issue turned out to be a cancerous mass in her abdomen that was roughly the size of a football. Technical diagnosis: a stage 3 ovarian cancer, it was a germ cell tumor of the yolk sac variety; something extremely rare. It was removed, along with an affected lymph node, on June 18th, and she began her first of 3 cycles of chemotherapy on June 27th. We are grateful for all of the support , love, and prayers--you can follow along with Maddie's journey here, but also by checking out the #Tealfor2 hashtag her softball organization created on Facebook, Twitter, or Instagram. Teal is for ovarian cancer, and #2 is what Maddie has always worn on the softball field.
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