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Be Brave like Maddie - Beat Cancer

$28,595 of $50,000 goal

Raised by 295 people in 7 months
Our princess Madelyn turned 4 years old on June 14th.  After 2 weeks of on and off fevers that didn't seem to go away, an ultrasound revealed that Maddie had a mass in her abdomen. On Wednesday, June 28, our lives completely changed; doctors told us that the mass was a malignant tumor. On Friday, June 30, Maddie went into surgery; unfortunately, the doctors decided that it was not safe to remove the entire tumor, so they took parts of it for biopsy. That biopsy revealed that she has a rare kidney tumor (cancer) that is aggressive. Tests also showed that she has small nodules in her lungs.
Maddie & her little brother Nixon

Maddie has had multiple chemotherapy sessions thus far. Her treatment plan (chemotherapy, additional surgery, and radiation) is estimated to be around 6-9 months. In that time, she'll be in and out of the clinic and hospital.

Maddie & her Dolly (Elsa)

Maddie has such a kind heart and she is full of wit, sass, curiosity, and most of all, she gives us a daily dose of her addictive laughter and smiles that show her dimple! Maddie is amazingly strong, brave, and her spirits are high; she is strong-willed and a lot of her personality comes out during our clinic and hospital stays, often making us and the hospital staff laugh!  She is a fighter and is the strongest 4 year old we know; Wonder Woman got nothing on our princess!

There are countless unknowns in our journey; please do not feel obligated to contribute as your continued thoughts and prayers are already more than enough.

Together we fight and we pray.
#MadelynStrong
#BraveLikeMaddie


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Update: 2.12.2018

it's February; amazing how time flies....we have a lot to update you on (we will address them through the bullet points we mentioned in update #21).

-Maddie's audiogram went ok. results showed that her hearing has been consistent throughout treatment, however, the constant fluids (which may be causing a bit of a hearing loss) may be a concern; therefore, Maddie is going to see an Ear/Nose/Throat specialist for monitoring.

-Maddie's GFR decreased from the 80s to 60s; this is on the low end. this number also decreased the dosage of one of the medicines for her ICE chemo. Another reason why Maddie will see a Nephrologist to monitor her single kidney.

-Maddie completed her round 8 of ICE chemo. Per usual, she handled it well and kept busy at the hospital: mostly with legos, play-doh, pre-K/Kindergarten workbook, and decorating hearts to create a banner to put in her hospital room! The day before going home, Nixon visited at the hospital and they had a picnic on the hospital bed (dinnertime)! After chemo and hospital discharge, Maddie went straight to dance class and attended a family event! It's amazing how strong she is!

Late that night, we got a call from the doctor who told us that an Oncology patient was discovered to have had chicken pox; everyone who was on the HemOnc floor at the same time as the patient who had chicken pox was called back the next day to get antibodies (a shot) to fight it (just in case they may have contracted the virus). It is important to note that these antibodies were only given to those who were immunocompromised (basically anyone receiving chemo; Nixon/Mom/Dad did not need the shots).

How does this affect the rest of the month for Maddie? Well, as a precaution, Maddie's check-ups do not occur at the clinic (so as not to expose any other HemOnc patients in the case that she has chicken pox), but instead we go to the hospital and enter an isolation room where follow-up appointments turn into 3-10 hours, depending on what her blood counts reveal. All appointments will occur in this isolation room until March 1st. (for instance: this past Friday, Maddie's blood counts were at their lowest, so she needed a blood and platelets transfusion; this ended up being a 10 hour check-up).

Maddie has been such a good sport about the whole thing; as of today, thankfully, no signs of chicken pox.

-The Board of Specialists who examined Maddie's case unanimously (and separately) came to the conclusion that they would like Maddie to receive radiation - to both the lungs and abdomen. Due to her medical state when she was diagnosed (metastasized rhabdoid tumor of the kidney - meaning the cancer had spread to her lungs), Maddie's radiation will not be targeted at certain areas, instead her entire lungs and whole abdomen will undergo radiation. Why? We all agree that we give this monster all we've got! We don't quite know the details of how long or how many sessions, but we do know it is Monday-Friday, along with sedation.

In the meantime, Maddie has been able to enjoy time out of the hospital: a sleepover with her cousins, got to see the Dancing With the Stars live show in Baltimore, visit Port Discovery (children's museum), watched DrumTao (Japanese martial art of drumming), and spend time with family! Her appetite hasn't been so great, energy is ok (although she takes long naps during the day because her body seems to be tired), and of course remains in high spirits! As we always do, we pray for no fevers or other signs of illness.

We thank you, like we do everyday, for your love, thoughts and prayers. Although she is nearing the end of her chemotherapy (she will have 9 total rounds), radiation is something new to us, therefore there is some anxiety surrounding it. We hope and pray that Maddie continues to respond well to treatment and that you all know how appreciated you are in this journey.

Happy early Valentine's Day.....although love should be celebrated daily, we want to give all of you our warmest hugs and kisses!

xoxo

Maddie and baby Elsa during a check-up
Dancing with the Stars Live!
playing with drums at Port Discovery
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Update: 1.16.2018

The hospital stay ended up being 7 days: the fever that brought Maddie in to the hospital went away after 24 hours and the blood cultures remained negative, but it was that darn ANC again - it was crawling (it stayed at zero for 4 days).

After 4 days of having an ANC of zero, the doctors decided to start Maddie on her GCSF daily shots (to help boost her immune system). During this hospital stay, Maddie got 1 blood transfusion, 1 platelets transfusion, and 3 GCSF booster shots.

1.10 - ANC=0; two of our favorite nurses created a hopscotch for Maddie and put it outside her room! Maddie loved hopping around! we put the hopscotch on her wall afterwards so that it doesn't get ruined.
1.11 - ANC=1.4 (the lab saw a monocyte - it would mature to be a neutrophil - accounting for the 0.4).
the nurses had previously mentioned that they wanted Maddie to meet another 4-year-old girl on the floor. we finally got to meet our new friend (a spunky little cutie, newly diagnosed with leukemia). although it breaks our heart to hear/see another child diagnosed, we were happy to meet them and let them know we understood what they were going through (despite the difference in diagnosis and treatment plan) and to tell them that it will be ok!
1.12 - ANC=6.65 (this number was hard to come by: the nurses and doctor came in with 3 different numbers. for this reason, Mommy asked the nurse to re-check with the doctor and to sit down with her and walk her through the calculation. it wasn't to give the staff a hard time, it was to get an accurate number.) this number was far from 100 to get discharged, so we were certain we weren't going to make it to Maddie's dance rehearsal on Saturday. the nurses were so sweet to throw a 'Princess Party' for the three 4-year-old princesses on the floor! it took place in the playroom - full of crafts, snacks, apple juice, stickers, and cuteness! while the girls played, the parents got a chance to talk about their child's diagnosis, the treatment plan, and how their illness was discovered. although each story is unique, we are going through the same thing - a challenging journey - and hope to be a friendly face of support as we cross paths.
1.13 - ANC=535! yes, you read that right - Mommy was also in shock. the nurses say that such an increase doesn't happen often, but it does happen (the GCSF shots worked - and Maddie continues to take the daily shots this week to get her ready for round 8 ICE chemo). as we roamed the hallways that morning, the doctor stopped us and said, "what are you still doing here? your ANC is in the 500s!" Mommy and Maddie gave the doctor a high-five and headed to the room to pack. before we left the hospital, Maddie dropped off some small gifts for her new friends (the two other 4-year-olds at the Princess Party), Nixon came to visit and play, and we ate breakfast.

The unexpected discharge allowed Maddie to attend her dance rehearsal and cookie party at her dance school! she was so excited! she's missed almost 2 months of classes, but she did awesome during rehearsal!

Maddie had been looking forward to her dance recital for weeks and she was happy to show relatives videos of her dancing! Watching Maddie on the stage at her dance recital on Sunday was everything (you wouldn't even know she was just at the hospital for a week and received platelets just the morning before)! Her performance meant more to us than we imagined, it reminds us: what happened yesterday doesn't matter, when God gives us a new day - it is an opportunity to seize and be better; when we are challenged, we learn and we do our best; when we fall, life doesn't skip a beat, so we get up gracefully and we keep going; we have fun; we credit ourselves for how far we've come; and we smile and strive for a happy heart doing what we love with who we love! (Mommy definitely cried during the performance.)
*we are currently having issues uploading the entire video of her dance; we will send it out once we've fixed it. thank you!*

1.15 - Maddie went to clinic for check-up: ANC=1050. all her blood counts were good, so no transfusions needed! we also discussed next steps:
-Maddie will get another audiogram to test her hearing
-Maddie will get another GFR to test kidney function before starting round 8 of ICE chemo
-Maddie will get another set of scans of her abdomen after round 8 of chemo
-Maddie will have a total of 9 rounds of chemo (God-willing, her body continues to tolerate the medicines well)
-Maddie's case will be presented to the group of specialists in February, which will help her Oncologist determine if Maddie will be given radiation (it looks like it may be a good possibility and likely to occur after the 9 rounds of chemo - radiation occurs everyday, whereby she will be sedated, and for a pre-determined amount of time)
-Maddie will continue to see a Nephrologist to monitor her single kidney

We are always grateful for each day, each day that we have our loved ones with us, that Maddie is getting better, and that you continue to support us! So, thank you, for taking this journey with us!

xoxo
Maddie made her very own crown!
our dancing star!
dance rehearsal!
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Update: 1.6.2018

We were very fortunate to be able to spend the holidays at home! We enjoyed every moment of it!! Maddie and Nixon went to bed just in the nick of time (11:30pm) on Christmas Eve and left milk and Oreos out for Santa! We always love to just spend the morning amongst the four of us on Christmas morning; a light breakfast and exchange of gifts, before heading out to see family. We got to spend time with family and friends; lots of food, laughter, love, and incredible blessings!

12.26 - Maddie had a clinic appointment. No transfusions needed, however, her ANC was 600 (not high enough to start round 7 VDC chemo, she needs 750). After clinic, Maddie got to watch “Ferdinand the Bull” movie with family, including Nixon (he fell asleep halfway through while Maddie laid back and ate popcorn, enjoying the movie!)
12.28 - Maddie returned to clinic to check blood counts: ANC = 730 (close enough to start chemo!) So, after leaving clinic, we went to the hospital for a scheduled 3-day stay for her VDC chemo. Thankfully an uneventful stay; Maddie was discharged on 12.30, in time to attend a holiday party with Mommy’s friends. Maddie also received her Neulasta shot - so brave: not a flinch or a tear - to help kick off her immune system 2 weeks after chemo.

On the last day of a trying year, we spent a quiet day/night at home: kids playing, ordering takeout food, and watching movies (it was perfect)! Maddie and Nixon fell asleep around 11pm on New Year’s Eve, but Mommy and Daddy were right by their sides to welcome the new year with kisses for their sleeping babies! We wish endless blessings for each one of you....as we like to say: new year, better me/you.

1.4 - Maddie’s follow-up at clinic revealed an ANC of 10, 6.8 hemoglobin (7.0 means transfusion), and low platelets. It was a full day at clinic: Maddie received Vincristine chemo, blood and platelets transfusions. Thankfully she was able to nap during the transfusions.

If you recall, VDC are the rounds Maddie has gotten a fever every single time (1 week after treatment). Like clockwork, although we pray and hope she avoids it, Maddie got a 101 fever at 11pm last night (Friday 1.5) and Mommy and Daddy were packed and ready this time (without hesitation, driving straight to the hospital and calling the doctor in the car to alert them of our arrival; as opposed to Mommy’s not so standard protocol of doing the opposite). The ER measured her temperature at 102.5 F. As expected, Maddie was a pro at the ER; she even fell asleep next to Mommy shortly after the port access and blood draws (it was 1am). So here we are: Maddie’s ANC = 0, hemoglobin = 8.9. The waiting game begins, 48 hours of negative blood cultures (no infections please), 24 hours fever-free, and ANC of 100 for discharge. We hope this will be a short stay and that Maddie is feeling better soon!

We appreciate your continued love and prayers....it helps us every single day! If you didn’t know already, we want to express our sincere gratitude as you are a part of this journey and our miracle - Maddie!

To kick off 2018, we’ve started a MadelynStrong team for the DC Walk for Wishes taking place on April 15. If you’d like to join or donate please access her page here: http://www.walkforwishesdc.org/faf/search/searchTeamPart.asp?ievent=1176402&lis=1&kntae1176402=ADE324C546BB4A8ABA58B6685C5BB7E8&team=6972445 (please keep in mind that the donations do not go directly to Maddie’s wish, instead it goes towards the Make A Wish Foundation - Mid-Atlantic mission to grant wishes to kids with medically life threatening conditions). Thank you, in advance, for your support!

Have a wonderful weekend, and stay warm (for those in the East Coast US).

xoxo
it should say Full-time Superhero
treasure chest of surprises from Santa!
milk and Oreos for Santa!
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Update: 1.1.2018

happy new year!

we pray that you are blessed with safety, love, and good health!

no words will ever fully express our love and thanks for all that you have given us during this trying time in our lives. we truly appreciate it!

we've attached a short video ... with some pictures and videos of the kids from the past few months. if Mommy could include all the wonderful memories we've had this past year, it'd be a really long movie that no one would want to watch. we don't know what's ahead, but we know we're very fortunate to have you by our side!

with endless love and gratitude,
us
happy new year!
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