Be Brave like Maddie - Beat Cancer

$30,900 of $50,000 goal

Raised by 333 people in 25 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: 6.28.2019

You may have noticed that our updates on Maddie are now quarterly, mainly because her scans are every 3 months. This past quarter just happens to be a very busy one for our family in general, and even more so for Maddie.

In April, Maddie started playing soccer. Let’s just say it’s not really her sport; although she loved being part of a team, Maddie was often seen picking flowers (maybe weeds) off the ground, cheering on her teammates when they scored, and her most favorite part was the snack time at the end! Our girl...... always doing things her way as long as it makes her happy!

We were grateful to be invited to the Make-A-Wish Mid-Atlantic Evening of Wishes where donors, esteemed guests, and wish families gathered to continue the fundraising efforts to help grant more wishes! Maddie delightfully got to be a part of the evening’s program and she, of course, loved being on stage!

MAW Mid-Atlantic also invited Maddie and Mommy to appear on Good Morning Washington, WJLA abc 7 (yes, we were on tv, and no don’t google it) on world wish day so we could talk about our experience with Maddie’s wish being granted, its impact, and the difference it makes to have a village of support (all because people care and are willing to give)! This interview was also to highlight the MAW Walk for Wishes, which occurs in the National Mall annually. Maddie was one of four Walk for Wishes captains!

In May, we celebrated some incredible milestones: (brother) Nixon’s birthday and Maddie’s graduation from Kindergarten!

In early June, Maddie had had her quarterly scans - thank God, Maddie remains No Evidence of Disease (N.E.D.)! Subsequently, Maddie was graduated to quarterly clinic visits because of her continued good health. How incredible this all is; and how incredible is it to look back on our journey and to be where we are today??! Every day we are breathing and healthy and able to enjoy life is considered a great day! Thank you Lord and to all of you for your prayers and love!!

On June 14, Maddie turned 6 years old!!!! Just......wow!!

Today, June 28, 2019, marks exactly 2 years to the day when our Maddie was diagnosed with a malignant tumor of the kidney. Every day we are processing this and every day we have a grateful heart!

We hope to be able to continue giving you great news! We wish for you a safe and very memorable summer with your loved ones!

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Update: 3.22.2019

Our last update was in September 2018; trust us when we say we think of all of you every day and the impact you have made in our lives. Time is flying and we are treasuring every moment!

Since our last update:
-Maddie and Nixon attended a regular season Redskins game; there was lots of cheering in their #91 Kerrigan jerseys! Thank you to the Redskins Charitable Foundation for hosting us!
-Maddie and Nixon have been wanting to go to a Caps game, so Mommy and Daddy took them to a pre-season game (where there'd likely be less profanity in the crowd) and had so much fun! However, Make-A-Wish Mid-Atlantic topped the experience in November and invited us to be a part of #CapsFightCancer: we attended a game where the names of the children invited (fighting or have fought) were projected on the ice and Maddie's very first time ice skating was with the incredible Braden Holtby!! MAW and the Caps players were so thoughtful and it was such an amazing experience for all of us!
-Maddie has continued taking gymnastics lessons until recently; she stopped gymnastics in February to start playing soccer (twice a week); Nixon stopped taking Ninja classes until recently and will also go back to playing soccer in April!
-For Halloween, Maddie dressed up as a unicorn, Moana, and Elsa (yes, she dressed up as something different to all the events she attended)
-Maddie finally got her decayed teeth removed. Originally, we thought she was getting 5-6 baby teeth removed, but once the oral surgeon and dentist went in, they realized she had more bad teeth than expected. While Maddie was under anesthesia, Mommy and Daddy decided that all decayed teeth should be removed (who cares about aesthetic reasons, we wanted to eliminate all possible reasons for her to get an infection or harbor bacteria); Maddie had a total of 11 teeth removed (all of the top front and most of the back teeth on both sides; she has 1 top tooth on the right and 1 top tooth on the left, and her bottom front are still there). When we left the dental office, in typical Maddie fashion, she didn’t care so much about the missing teeth, but she was annoyed that she had gauze in her mouth. Since then, Maddie has gotten used to chewing with her gums and the teeth she has left! She’s gained more weight because (as the dentist said) food tastes better now!
-On December 14th, Maddie had her scans; no big deal for Maddie since she just thinks of it as a day of “pictures.” Thank God, Maddie’s chest X-ray and abdominal and pelvic ultrasound were clear; Maddie remains NED (no evidence of disease) 9 months post-treatment!
-Thanksgiving, Christmas, and New Year’s celebrations were all amazing because we were home and got to spend it with our family and friends!
-In January, as the government shutdown occurred, we were asked to provide a testimonial of the importance of blood donation (often, blood drives occur at government sites and the shutdown affected the available inventory). Mommy and Daddy were interviewed and took part in a video message (organized by INOVA Blood Donor Services and WUSA9) to stress the importance of blood donation! Endless thanks to all those who donate blood products so that others could have a chance to thrive! We are so grateful and committed to this cause that Daddy has switched career industries and will be taking on a position with the INOVA Blood Donor Services!

On March 13, 2018, Maddie received her very last inpatient chemo medicine. Yes, it has been 1 year (9 rounds of chemo later)! That one year has been a blur and a collection of vivid memories, jam-packed with the entire human spectrum of emotions, all at the same time; God is good to us and we are grateful for every day!

On March 18, 2019, Maddie had her quarterly scans (1 year since treatment). Let’s just say this was the most nerve-wracking for Mommy. We pray and we stay positive! On March 19, 2019 we went to clinic to get the results; Thank you God – despite having the flu just a few days before, Maddie’s chest X-ray and abdominal and pelvic ultrasound were clear; Maddie remains NED!

Maddie's hair has grown in beautifully (in case you're wondering, it is the same texture and color as it originally was)! Maddie continues to love Kindergarten ….. Mommy and Daddy (and we’re sure all of you are too) are excited and astonished that, God-willing, this brave little girl will be in first grade in a few months!!

We’ll leave you now to enjoy every moment of your todays and tomorrows! You will remain in our thoughts and prayers and we will be sure to update you again! We send you love and thanks, as always, for the love, support, and prayers. We appreciate you!
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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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Raised by 333 people in 25 months
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