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Be Brave like Maddie - Beat Cancer

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Raised by 327 people in 12 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: 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!

xoxo
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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Update: 4.9.2018

Radiation began on March 28; every session she is under anesthesia. At the radiation oncology department lobby, there is a large table with a 1000-piece puzzle that people work on every day that they receive radiation (likely adults); Maddie decided she wanted to start her own 500-piece puzzle on her own mini table in the lobby (if you can imagine, she and her Tinang have worked on 300-500 pieces before – she loves puzzles and they are often easy for her)! Although Maddie is normally in and out of her radiation sessions fairly quickly (approximately 10-20 minutes for the actual radiation, but we have to take into account port access/de-access on Monday/Friday, anesthesia and waking up from it), she hasn’t had much of a chance to work on the puzzle (and we certainly aren’t going to hang around that area longer than we have to); we do hope (as a joint effort) to complete the puzzle on the day she completes her last radiation session!

The first 7 days, Maddie received radiation on her entire lungs and entire abdomen. On the 8th session, she received an extra dose of radiation to her lungs (to address the metastasis of nodules originally seen at diagnosis). Today, she completed her 9th session. The remainder of the radiation will now be focused on the right flank of her abdomen, where the tumor originated.

Although her port is accessed throughout the week (we asked that it be removed on weekends to give her some freedom and a “break”), it doesn’t get in the way of her daily activities. She hasn’t been home with “tubey” for such a long period of time, so we reinforce the taping with extra layers to ensure it is not exposed (at times making her entire right side of her chest covered in tape). It also didn’t take long for her to get used to the radiation markings and clear tape all over her entire upper body (these markers help the radiology technicians ensure that she is in the exact same position – along with comparing x-rays – every session to radiate the correct spots). Today they drew a new large vertical line from her chest to belly button; Maddie said, “Whoa, there’s a new line…and it’s blue!”

In general, we are so grateful that Maddie is handling radiation well! There are numerous short term side-effects, such as vomiting, loss of appetite, diarrhea, fatigue, etc.; we are happy to report that Maddie has not had many of them – maybe a slight decrease in appetite or an extra poop one day, but other than that she’s been doing well! She is extra tired sometimes, but we think it is a combination of the early mornings (we are at the hospital before 8am because she has to fast), the anesthesia itself, and late naps that throw off her sleeping schedule. When Maddie’s not in the mood to eat, we enforce Pediasure so she gets the nutrients and maintains her weight. Maddie still has check-ups at clinic for blood counts because radiation affects the bone marrow; so far her counts have not required her to get transfusions. Maddie also had an EKG and an ECHO done as an outpatient at the hospital; the results were normal!

On Friday, April 13, Maddie will complete her 13th radiation session….thus completing her entire treatment plan (that means chemo and radiation)! Wow!! (and yes, you have seen us through all of it; supported us and prayed with us throughout all of it; isn’t love and kindness and prayer and positivity and a sense of community so powerful?!!)

We are beyond any explainable emotion at this point; we are beyond grateful and fortunate and blessed and lucky, or whatever word you want to use; it is indescribable! To be honest, we are not sure how to go back to the time before this happened, to a time that was what people would call “normal”; we don’t quite know what that is anymore.

What’s next?
Maddie still has follow-up appointments at clinic (how often? the Oncologist will let us know) whereby her blood counts will be checked in case she needs blood/platelets transfusion. There are numerous side effects from her chemo and radiation that require additional doctor visits (we’ve mentioned in previous posts): monitoring her hearing, heart/lung function, and left kidney, as well as teeth extraction caused by decay. Maddie’s next scans/ultrasound will take place in June; thereafter check-ups will occur every three months and after a while (with continued clear scans) they will be spaced out even further (6 months, then yearly, and so on). Because Maddie still has her port, if she spikes a fever of 101, we still follow the Oncology protocol of going straight to the ER and she receives antibiotics. We don’t have a scheduled date for her port removal yet, but that will be discussed after she completes treatment and probably the next clear scans! Oh, and let's not forget: Maddie's hair is starting to sprout (yes, like a plant) on her head, eyebrows, and eyelashes!

Thank you. Thank you! Please continue to pray with us as our little miracle continues to fight and thrive and live!!

We'd love to see you all at either of the events this weekend:
-MaddiePalooza: https://www.unionstage.com/event/1640591-maddie-palooza-speaks-washington/
-DC Walk for Wishes: http://www.walkforwishesdc.org/faf/search/searchTeamPart.asp?ievent=1176402&lis=1&kntae1176402=57EE01CB8D274F2184D4A0BBD3359A34&team=6972445 Team MadelynStrong

xoxo

M & N riding their scooters!
thanks for the tickets Make-A-Wish!
The Speaks rehearsal! See you Saturday!
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Update: 3.23.2018

Like clockwork, Maddie came down with a fever a week after her VDC chemo stay at the hospital. Maddie was admitted for fever and neutropenia.

Thankfully, the fever went away after 24 hours and the blood cultures were negative; however, her ANC remained zero for 4-5 straight days. For this reason, Maddie was given 4 GCSF booster shots to get her ANC to rise. On 3.15, they barely counted any cells; the next day, her ANC jumped to 240 (allowing us to go home 3.16)! Before heading home, Maddie was given blood, platelets, and a GCSF shot to hold her over until the next clinic check-up. Overall, during the 10-day hospital stay, she received 2 blood transfusions and 3 platelet transfusions.

Maddie had a lot of energy while at the hospital and appetite was ok, allowing her to maintain her current weight. Towards the last few days of the stay, she began to get cabin-fever and always wanted to go to the playroom and was practically bouncing off the walls while riding her tricycle in the hallways. As usual, Maddie stayed busy at the hospital with puzzles, play-doh, arts & crafts, dancing, riding her tricycle, workbook learning, and helping the HemOnc staff with fun projects! One project she was super excited about was an Easter egg hunt; Maddie helped cut out some eggs while a hospital volunteer placed them all over the HemOnc floor hallways. Maddie and a new friend (a super sharp-witted 5-year-old boy newly diagnosed with leukemia) had so much fun doing the egg hunt!

Maddie met her new 5-year-old friend at the playroom the day he was admitted to the hospital (it was during our last days at the hospital); the Child Life Specialist on the floor said that Maddie was part of the "welcoming committee" because she wanted to go wherever her new friend was; at times the first thing she wanted to do in the morning was to say hi to him! We are always heart-broken to see a newly diagnosed child, so Maddie and Mommy made sure to provide comfort and friendly faces for them; Mommy got a chance to talk to the parents and family - they are incredibly sweet people who deserve all the kindness and support in the world!

Maddie also received her very last dose of chemo, Vincristine, during the hospital stay! This marked the end of her 9th and final round of chemo! This was so surreal to us! Our Wonder Maddie was nothing short of brave, joyful, and awe-inspiring. This was also bittersweet for our family because we’ve grown very attached to the hospital staff (they threw a Moana luau dance in Maddie’s room); we miss them already, but we are so happy to be home!

On 3.20, Maddie had a CT scan of her lungs and abdomen. Her Oncologist called us with results on 3.21 stating that there is “no evidence of growth/disease" (N.E.D.)! We are elated and grateful for this blessed outcome! God is so so good to us (and so are all of you, because we believe that you were hand-picked to be a part of our lives at this moment in time)!

On 3.22, Maddie had the mapping/design for her radiation; essentially she was given anesthesia so that they could create the mold of her body/positioning so that when she receives radiation, it will hit the exact spots they need it to. Maddie will be accessed every Monday then de-accessed (from her port) every Friday (she will get the weekends off), and she will also receive anesthesia every time to make sure she doesn’t move when radiation is applied. Maddie will undergo radiation treatment 3.28-4.13. Timing is incredible: Maddie-Palooza is on 4.14! (If you haven’t already, join us if you can to celebrate our Wonder Maddie and this journey we’ve undergone together.) https://www.unionstage.com/event/1640591-maddie-palooza-speaks-washington/

Why are the doctors still wanting to do radiation after saying she’s N.E.D.? As we’ve stated before, Rhabdoid tumor is very aggressive and we want to give it everything we’ve got. We do not consider treatment to be over until after radiation; but even then, we hope that you will continue to send Maddie positivity, love, and most importantly, prayers! Thank you, thank you, THANK YOU!

So much love and hugs from us!
Have an incredible weekend!!
being Moana and dancing the luau!
riding the tricycle!
last chemo!!!!!!
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