Be Brave like Maddie - Beat Cancer

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Raised by 328 people in 19 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.

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Update: 9.20.2018

We hope this message finds you well!

It has been a busy 2 months since our last update; the great kind of busy because we have the opportunity to be at home, take adventures, and create incredible memories together as a family!

Here is a gist of Maddie’s recent whereabouts:
• Maddie has astigmatism; she picked out her own eyeglasses and we’re thankful she was excited about it and has become accustomed to wearing them.
• 8.14.2018 – Maddie had her last port access (for CBC and monthly flush).
• 8.15.2018 – Maddie had her port removal surgery (performed by the same surgeon from her other surgeries)! The port was removed without a hitch; thankfully Maddie recovered quickly without the need for pain medication.
• 8.23.2018 – Maddie started Kindergarten! She continues to enjoy fun times with her friends, learning how to write, solve math problems and do science experiments, use the promethean board, drawing hearts and flowers, and hopefully reading soon!
• Maddie attended 2 fundraising events in support of children and illnesses: Night of Magic at the hospital hosted by Northwestern Federal Credit Union Foundation and CureFest at the National Mall, DC.
• Mommy and Daddy took Maddie and Nixon to their first Nationals and (pre-season) Redskins games! We hope to also take them to a pre-season Capitals game soon.

Make-A-Wish Foundation is one of those organizations that we knew existed, but never really realized the extent of their impact. Well, let us tell you that MAW and its supporters accomplish amazing things to gift “wishes” to children (with life threatening illnesses)! It began with our wish granters (volunteers; ours happened to have been affected by cancer/illness in one way or another) meeting with us and spending time with Maddie to discover her wish. Ultimately, her wish was to “meet Moana, on a boat!” On September 6-11, our family was beyond fortunate to take a trip and create amazing memories at Disney’s Aulani Resort in Hawaii! We are thankful and humbled by all parties involved (MAW http://midatlantic.wish.org/, United, Disney’s Aulani https://www.disneyaulani.com/) for showering us with impeccable hospitality; we truly appreciate you taking Maddie’s wish to a whole new level! Maddie and Nixon’s smiles/laughter, our exciting adventures, and memorable moments are priceless!

When we returned from the Hawaii trip, Maddie had her 6-months post treatment scan on September 14: an abdominal ultrasound and chest x-ray. God has graced us once again with His love, protection, and continuous healing with Maddie’s N.E.D. (no evidence of disease) results! Maddie’s clinic checkup also went well, her platelets continue to rise and recover; she is no longer on any medications aside from vitamins; however, we are still working on her eating habits for her to gain some more weight.

Every day is truly a gift for us! Thank you for being a part of it!

In case you are interested in joining us or donating to the cause through the following events, please click on the following links:
• PSV Race to make it all better 5K and Family Health Fair: https://www.firstgiving.com/team/378276
• CureSearch Superheroes Unite! http://www.curesearchevents.org/site/TR/CureSearchSuperheroesUnite/CureSearchSuperheroesUnite?team_id=3464&pg=team&fr_id=1702
• Hopecam's 15th Anniversary Gala Celebration https://www.hopecam.org/news/events/

As always, we are grateful for your continued love, support, and prayers! We send you our love and well wishes (until our next update).

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Update: 7.18.2018

Maddie was diagnosed with cancer on June 28, 2017 (she had just turned 4 years old). She had her first surgery on June 30th; and soon after (July 6), Maddie had her first round of chemo. It has been one year.

Although it seems we should be saying that getting back to “normal” life activities is more calming, it’s actually been quite busy for our family. Since our last update in mid-May, we’ve been enjoying the summer with lots of adventures:

• Visited the Pittsburgh zoo, where we finally met the incredible family (whom we’ve kept in touch with) of a 4-year old princess who is also a survivor of malignant rhabdoid tumor of the kidney (the same diagnosis as Maddie). That little girl has shown no evidence of disease for almost 1 year now!
• Visits to the pool and attending birthday parties of family/friends
• Maddie (along with her class) had an awesome Stepping Up (to kindergarten) celebration
• Maddie is back in school full-time and loving summer camp
• Still on the Caps winning the Stanley Cup high (our house was always in an uproar for all the games)
• Maddie celebrated her 5th birthday with her friends and family (a dinner with Moana on the actual birth day and superhero themed party that weekend)
• On July 2-9, we took our first vacation and trip away from home (in a very long time): we visited family in Washington state (RVing/camping, visits to the Pacific coast beaches and Whidbey Island, ferry rides, 4th of July parade/fireworks, and lots of silly times with their cousin, and fun/beautiful sightseeing)
• Maddie attended a Princess Party hosted by Ever Laughter Parties ( www.everlaughterva.com)

Maddie had her very first CT scan (3 months) after treatment on June 20. Days leading up to it were filled with anxiety and a million emotions for Mommy (some call it “scanxiety”), but thankfully Maddie saw it as just a regular day to take “pictures” of her chest and belly. (If you recall, her Oncologist had mentioned to us that patients diagnosed with this type of tumor have experienced a relapse 1-2 months after finishing treatment.) By God’s grace, Maddie’s scans were clear!

Thank you for your continued love, positivity, support, and prayers!

Maddie still has a number of appointments she has to go to: monthly clinic visits to check CBC and flush her port, hearing test, annual check-up with her Pediatrician, and now vision exam. Maddie’s hearing hasn’t had any significant changes (yes, there may have been a slight loss during treatment – she doesn’t hear lower tones very well…..but we are thankful it is not getting worse). Her 5-year old check-up with her Pediatrician went fine, however they want her to take a formal vision test.

Since our last update and Maddie's end of treatment, she has made 2 trips to the ER for fever, not for low immune system.

Maddie is currently on only 1 medication: Periactin, the appetite stimulant. We are continuously working on getting her to eat more to gain more weight (thankfully she's on a slow rise) and weaning her off the medication.

Every day that Maddie is able to do activities that kids her age do (without ouchies) and she is happy and healthy, we are grateful!

Next week, Maddie will have a consultation with the surgeon (who performed her kidney surgeries and port insertion) to hopefully schedule the removal of her port. Because her scans after treatment showed no evidence of disease, the Oncologist cleared her to get her port removed (outpatient surgery). What does this mean? Without a port, Maddie does not have to go straight to the ER when she gets a 101 degree fever, she would be less susceptible to infections since there will no longer be that direct access to one of her large veins, and because she is no longer getting chemo medicines.

Furthermore, we are working to coordinate a date/time that would knock out two birds with one stone: while Maddie is sedated for her port removal, the dental surgeon would subsequently extract or restore some teeth that have decayed during her treatment. What is the importance of getting these teeth fixed? According to the dentist, teeth won’t naturally fall out until a child is 6-7 years old; because of what her body has been through, all involved parties are in agreement that we remove (as much as possible) anything that could lead to an infection anywhere in Maddie’s body.

We are truly grateful to you and all the powers above, for being by our side and giving us endless love and support! We hope you are having a wonderful summer and we hope to continue to share great news with you!

With love,
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Update: 5.21.2018

We hope this message finds you well and that you are enjoying the summer weather!

Maddie's clinic check-ups (she's had 2 in April since our last update and 1 a week ago) have been going well, blood counts are stable and she's not needing any transfusions.

Amazing how fast hair grows: Maddie's hair on her head is now beyond a peach fuzz, her eyebrows are full, and we're so happy to report that her eyelashes are growing in just as she previously had them: long and thick!

We are loving being at home; despite the sibling rivalry, annoyance, and bickering, there are lots of hugs, laughter, and tag-teaming between Maddie and Nixon! Watching them spend time and grow together is incredible! We celebrated Nixon's 3rd birthday earlier this month!!

Maddie also started back at her (old) school; she is currently enrolled 3 times a week. At first we were concerned that the kids would have a lot of questions, but we believe that Hopecam's ( https://www.hopecam.org/) mission to connect Maddie to her school over Skype and her accompanying Nixon to school every now and then helped. Kids are so smart and carefree; they gladly welcomed Maddie back to class! Mommy attended a parent-teacher conference and her teachers constantly tell us that she's doing well; like she hadn't been absent from school at all! Maddie has been very happy to be back at school with her friends, and vice versa; when we drop her off at school, we immediately hear the excitement in her classmates' voices when they squeal: "Maddie's here!" Those kids are so sweet; we are blessed!

Maddie has been attending her dance classes, which sadly came to an end yesterday with her Spring Dance Recital! Maddie did a wonderful job, we are so proud of her! We often reflect on our busy/fun times by taking turns discussing our favorite part of the day. Maddie said her favorite part of yesterday was: "being on the stage!"

What's coming up in June?
-Maddie will be enrolled full time at her school; summer camp will be filled with exciting activities, so we're sure she'd prefer to be at school!
-Maddie will get a GFR to monitor her kidney function.
-We will be attending the Alex's Army Push-Up Challenge on June 10: http://alexsarmyccf.org/ please join us if you can!
-Maddie will have a follow-up appointment to flush out her port (monthly cleaning) and to prepare her for her scans later in the month.
-Maddie is turning 5 years old on June 14!

As always, thank you for your time, thoughts, love, and prayers! We hope you enjoy the pictures and videos of our Wonder Maddie! We also hope you are well and that the weeks to come (until our next update) are full of joy and blessings!

Maddie's Spring Dance Recital!
loving being back at school!
playing outside on her scooter!
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Update: 4.18.2018

On the beautiful God-given day of April 13, 2018, our Maddie had her last radiation session to complete her cancer treatment (chemo and radiation)! Praise the Lord for He is always so good to us. We're happy to report that Maddie (with some help) was able to finish her 500-piece puzzle at the lobby, even though there were several pieces missing! With Mommy, Daddy, brother Nixon, and Godmother (Tinang), Maddie hit the gong at the radiation oncology department to mark the end of radiation; then she had a clinic appointment (no transfusions needed and had her port de-accessed) and rung the milestone bell to mark the end of her chemo treatment!

What an incredible time....to celebrate strength and love and bravery and life itself! If you ask us how it feels to be here, on this day/time (at the end of treatment), we are still awe-stricken and likely unable to describe the feeling: we are of course happy and relieved, but somewhat uneasy and anxious about the uncertainty of the days to come and the return to "normal" life.

On April 14, Maddie-Palooza was beyond anything any of us could've imagined! Who gets her own rock concert to celebrate (and a 4-year-old at that)?! Wonder Maddie does....all because she is so loved and supported by all of you! Thank you is not enough to say/show you how grateful we are for those who have taken time away from their loved ones and their busy lives to prepare for this epic event - an entire village of support coming together to show our family how much they've got our back! May God bless you all for your kind hearts!! We were also overjoyed by those of you who came and talked to us or gave us hugs! We are beyond lucky to have all of you!!

On April 15, we attended the DC Walk for Wishes - Mid-Atlantic Make-A-Wish Foundation! We appreciate all the efforts in fundraising for this great cause, and to those who braved the cold and windy conditions to show Team MadelynStrong some support! We love you!

Yesterday Maddie had a check-up at clinic to see what her blood counts are; thankfully her counts are holding steady and no transfusions were needed. Now we wait and hope that her blood counts rise on their own without a hitch. Maddie has another clinic check-up this week, then an audiogram next month to monitor her hearing. After that it's scans in June. We're finding that Maddie is not used to having this much free time; God-willing she will gradually start going back to school in a few weeks (we wanted to give her body some time to rest and recover)!

As we've stated before: this fight is not over - we continue to hope and pray everyday that she is well and that each and every scan from here on out is clear and that she remains N.E.D. (no evidence of disease). Please continue to send your positive vibes and prayers to Maddie (we still need it to stay strong)! In addition, we will continue to update all of you on Maddie's whereabouts and after each scan. We know you all care so much about Maddie, and for that we love you all so much! (for more updated information, please follow #MadelynStrong and #BraveLikeMaddie on social media)

Thank you and God bless!
April 13, 2018 - completed treatment!
April 14, 2018 - Maddie Palooza!
...still celebrating!
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