Team Maddie Strong - Fighting together

Team Maddie Strong - Fighting together Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Team Maddie Strong - Fighting together, Medical and health, Grand Rapids, MI.

NEW ACCOUNT.HER OLD ACCT WAS HACKED.Maddie was diagnosed with a rare form of brain/spine cancer.She also has a rare genetic mutation they can’t diagnois along with LiFraumeni.Her sister Avah was also diagnoised with LiFraumeni and one they can’t diagnois.

Being home is priceless 🙏 Buddy and Chip made the kids an Apple Watch 😆 The little things that matter and I’m just tryin...
12/20/2025

Being home is priceless 🙏 Buddy and Chip made the kids an Apple Watch 😆 The little things that matter and I’m just trying to keep the spirit alive . We really need laughter and lots of time together right now . It’s so hard on everyone . Trying to recover from the hospital is so hard , it literally takes so much out of us. I’m mentally and physically exhausted.
Madison still had a headache with some stomach pain that always ends up being on her left side (shunt side ) not sure what’s going on . The drs can’t give me answers to why or what’s causing it . The spot next to her shunt in her brain is still unknown. All I can do is what her and monitor her symptoms and wait for her follow ups and hopefully no more visits to the hospital 🙏It’s very frustrating !!
Now the kids are on break for the holidays so we are going to just take one day at a time . We get a lot of messages about if we need anything etc. I’m not one to ask but anything would help right now . Everyday is a struggle . But all we can do is take one day at a time or even one minute . Prayers and positive vibes are always needed Thank you for all your continued love , prayers and support.

We finally got home around 5pm … we are both exhausted. Time for something to eat and a movie ❤️ Avah and Hunter gave us...
12/18/2025

We finally got home around 5pm … we are both exhausted. Time for something to eat and a movie ❤️ Avah and Hunter gave us both hugs and boy did I need those hugs and I love you’s. These days are so tough and not on just Maddie but the whole family . We never know what’s in store for us . All we can do is take one day at a time or even one minute at a time most days . I would like to say thank you to everyone that has reached out to me , sent positive vibes and prayers to our family. It is needed more than you know . I have had a few messages about sending cards etc to Madison and the family . If you would like to I can send you our address . Just send me a message . Also a few messages about us having a Wishlist I can also send those to you as well. Please know that we appreciate all your support so much . Life is full of so many ups and downs and in betweens . This has been a very hard journey and unfortunately it doesn’t end for Madison . Madison is very strong and brave , she will never give up nad I won’t either !!!!

Well .. her optical nerves are stable meaning there is no change to them since her last set of pictures a couple months ...
12/18/2025

Well .. her optical nerves are stable meaning there is no change to them since her last set of pictures a couple months ago. Madison gets checked every 5-6 months due to her having optical atrophy. Today the pictures she show us that she doesn’t have papilla edema which tells us that the don’t think her shunt is malfunctioning. Her headaches are better today and so with that being said we are being discharged . We will continue to monitor at home and have a follow up with neurology. We will see neurosurgery in a couple months and we will be contacting oncology since we still have no answers to the spot we are seeing next to her shunt in her brain. No one seems to know what it is , which is very frustrating. I feel like we weren’t heard today and it’s very difficult trying to advocate for Madison . But all we can do now is get home , rest and see Avah and Hunter . Take one day at a time , pray and watch . I feel like all I do is survive . Survival mode is all I know and it’s getting harder and harder 😭 This takes so much out of me emotionally and physically and for Madison . It never gets easier and because she is so complex there is never an easy answer to any of it . But all I can do is trust God and keep the faith . Madison is the strongest girl and I know she will never stop fighting and either will I . Madison has been having a very hard time lately and this has definitely made things a lot harder . So please continue to pray for her and our family . This puts so much on Avah and Hunter as well. This time of year is so hard … but I know we can get through anything. We have been fighting for 15 years .. Madison’s whole life has been nothing but a fight to live . No child should have to endure any of this . 😭 So if you see Madison , Avah and Hunter please say something to them even if it’s just a smile . We need all the kindness, positivity and prayers right now . Thank you for being here with us. We love you all .

At ophthalmology to check her eyes … we are ruling out that it’s her shunt . We are checking her eyes for Papilledema. M...
12/18/2025

At ophthalmology to check her eyes … we are ruling out that it’s her shunt . We are checking her eyes for Papilledema. Madison is a tricky case when it comes to anything with her shunt and medical conditions. So we will see what they say . All her tests as far as viral infections like Covid the flu etc is all negative . Which ruled out all of that . So now we just see what this Dr says . She will have a bunch of pictures of her eyes done to see how things are . She does have optical atrophy so we already come in and get checked every 6 months and the last appointment was stable . So we will see . Thank you for all your prayers and support .

We are going to try and rest now … it’s almost 4am 🙏🎗️ this floor brings back so many things 😭 this is so hard . But she...
12/18/2025

We are going to try and rest now … it’s almost 4am 🙏🎗️ this floor brings back so many things 😭 this is so hard . But she is in good hands , we will see what today brings . Thank you for all the continued support. Team Maddie strong 💪

Finally in the room room 914 and it’s 3:08am 😬 now let’s see if we can try and get some rest .. 😭🙏🎗️
12/18/2025

Finally in the room room 914 and it’s 3:08am 😬 now let’s see if we can try and get some rest .. 😭🙏🎗️

Still waiting in the ER for a room …. We have been here since 5pm , it is now 1:30am and no room yet. We are mentally an...
12/18/2025

Still waiting in the ER for a room …. We have been here since 5pm , it is now 1:30am and no room yet. We are mentally and physically exhausted. PTSD and our anxiety is on overdrive . We need to rest … 😭🎗️🙏this is all to much … we need lots of positive vibes and prayers!!!

And just like that a week before Christmas we are getting admitted to the hospital 🙏🎗️😭 please keep the prayers coming ....
12/18/2025

And just like that a week before Christmas we are getting admitted to the hospital 🙏🎗️😭 please keep the prayers coming . We are struggling emotionally and we are physically and mentally exhausted . Christmas is already hard and we are struggling to get by and now adding this . Life is so tough 😭 hanging on by a thread .

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Grand Rapids, MI
49508

Website

https://www.amazon.com/hz/wishlist/ls/82B06UQ9PDK4?ref_=wl_share, https://www.am

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