Raelynn fights brain cancer

10/13/2021

Thank you Russ, Little Bricks Charity and C.S. Mott's for all you do not just for Raelynn but all the amazing little warriors 💛

10/07/2021

Hey everyone! I know it's a bit last minute but I will be having a little meet and greet at trestle park today from 5-6 with Russ from little bricks charity if anyone would like to come say hi! If you don't know who Russ is he is the president/founder of Little Bricks Charity a non profit that donates lego to hospitalized/sick children, like Raelynn. He is currently on a tour delivering lego to 13 children's hospitals all over the US, including the hospital Rae goes to! For more info on what he's all about head to his tiktok page 💛 hope to see some people out there!

09/01/2021

September is childhood cancer awareness month, remember to go gold 🎗 for Raelynn, EJ and so so many others who have lost their battles, are still fighting or have fought 💪

08/24/2021

Today miss Raelynn turned 2 years old! While her party isn't until this weekend we still celebrated in Bluey fashion today the best I could. Safe to say she loved it (but not as much as bluey herself 😂) We are so thankful she is doing well and can enjoy her special day this year ❤❤

07/28/2021

Hello everyone, it's been awhile so I wanted to post a little recap of the past few months on here ❤ the last eeg Rae had in April turned out great and still no signs of seizures returning, we're supposed to have an appointment with neurology soon just to check up with them. The mri from April ended up coming back stable/possibly slightly improved. Since then she has been doing great, we've been just enjoying family time whenever we can and making life as normal as possible for both our girls. More recently, she had another mri on the 22nd and a follow up for that yesterday (27th) where we were told it is yet again "stable" at this point we were told unless something changes it's basically up to neurosurgery on what/when our next move will be. Every time we go in I get a little more/different details on the nature of her tumor, this time was no different but I will go into that another time. For now we are just staying on course with the Vitrakvi and next mri will be end of oct/beginning of Nov. Thank you all for continuing to send love and prayers to our beautiful little girl ❤

04/11/2021

Raelynn's EEG on Thursday went well, shes more or less getting used to this stuff now (😕) and had an awesome person doing it this time so we got some smiles but had to swaddle her cause she was too wiggly. We got the report already but wont know exactly what everything means until her virtual visit with the neurologist on the 16th. What i do know is there were no seizures/events captured, unfortunately we didnt get sleep this time only drowsiness, and she has an increased risk for focal seizures. Hoping the 16th will clear some things up for for now thats all I know ❤

03/31/2021

Hey everyone, I know its been forever since I've posted here so im going to try to catch you all up on whats been going on since I posted last. We had a virtual meeting with her oncologist on the 17th just as a mid way to MRI check in, talked about how she's been having some issues sleeping/always being tired as well as her lack of appetite. We think the sleeping issues are from the Vigabatrin wean so we were told we could give her a small dose of melatonin or benadryl for the nights she cant sleep. As for the appetite it could be partly everything going on with her and partly just normal toddlerness. As of the 23rd she is officially finished with her Vigabatrin 🥳 so far still havnt seen any siezures but we have an EEG on the 8th to make sure everything is staying clear. Her next MRI is on the 21st and after will be having another meeting with her oncologist. We really need both the EEG and the MRI to go well so 🙏🤞. Over all shes been doing really well, we've mostly just been keeping to ourselves and trying to enjoy our time together, things have been really hard with austin always being away. I'll try to keep this page updated as much as i can, in between here tho if you want to check on us I usually post more on our tiktok I think thats about everything for now, we love you all and please keep us in your thoughts for this EEG and MRI coming up ❤❤

02/15/2021

Around August was her last known episode, hoping to keep it that way 🙏💛

02/04/2021

🎗❤

01/27/2021

So quick update on Raelynn's latest MRI results. Her oncologist and I had a virtual meeting yesterday because she wanted to discuss with another radiologist but things are still up in the air with it. They've decided to take the scans to the tumor board Friday morning to go through all of her scans in more detail with oncology, radiology, and neurosurgery to see if we need surgery sooner rather than later or if we can stay on our current course of treatment until her next scan in 3 months. Not really the news we wanted but trying to focus on the fact that theres no growth and she is doing well as of right now ❤ I will update again after Friday

01/23/2021

Hey everyone, I'm so sorry for the lack of updates on here lately. So if you didn't know Raelynn had her sedated MRI on the 20th, she did very well and everything went smoothly. While she was under they drew labs and her counts were in the high range, always great to hear. After recovery we headed to a clinic appointment with her oncologist, we talked about a few things, unfortunately with her type of cancer there are still so many unknowns but over all she is doing great. I was showed the scans from July, October and this new one and from the Dr's standpoint she said it looks like there is still improvement with this targeted chemo but radiology hadnt read it at that point yet. The report has since come in but its very confusing for me to read so until i talk to her Dr again im not sure on how much improvement there actually was. Her next scan will be in 3 months as of rn. We are also on week 3 of her 12 week Vigabatrin wean, other than being super tired, dark circles all the time and in turn cranky lol she is doing well with it, so far haven't seen any return episodes. So all in all good news ❤ Thank you for all the love and support, I will update again as i know more about the MRI ❤

01/08/2021

Hey everyone, we have a few updates for you sorry it took so long. Raelynn had her EEG on the 4th and about 2 hrs after we got home she ended up with a lower 99 fever but the next day it got up to 102-103 so I got ahold of her oncologist, they said with the type of chemo shes on we were ok to stay home and just so see her regular pediatrician the next day as long as the Tylenol could control the fever. She got checked out yesterday and everything was for the most part ok, but we had to go get a covid test today just to be safe, will know those results in a couple days but so far today she has been doing better the fever (and diarrhea tmi sorry lol) is gone but shes still dealing with a bad stuffed nose,hoping that goes away soon too. During all this we got the EEG results which showed no signs of seizures 🥳 so her neurologist has started her on a 12 week wean plan for her Vigabatrin, if all goes well with this we shouldnt have to get another EEG till around march/april and then they will look into starting a keppra wean so amazing news there. And lastly we got a date for her next MRI, it will be January 20th and we'll also have an oncology follow up the same day so fingers crossed we get good results from that as well! So sorry this was so long, i fell behind a bit being on my own. As always thank you for your continued love and support 🥰

And huge shoutout to the best big sister in the world who turned 4 years old on the 5th!! 🥳🥰

01/01/2021

Hey everyone, i hope you all had a Merry Christmas and Happy new year! Sorry we've been more MIA lately its been a busy couple weeks but i do have an update on Raelynn. We finally got the EEG that we missed rescheduled so that will be on Monday the 4th, we're still waiting to find out when exactly her MRI is but its supposed to be in the next couple weeks sometime. Hopefully the EEG will still show improvement so we can start weaning off of the Vigabatrin 🤞 we love you all and thank you for your continued support 🥰

Shirts, bracelets, and stickers are all still available for purchase 💛

12/16/2020

So as you guys know Rae has gotten alot of EEGs done and will keep getting them indefinitely, well someone of our tiktok account commented something ive never heard of before, the Nilly Noggin. Its a cap that goes over the electrodes and wiring to make it more comfortable and less scary looking. The gauze and tape caps cause her so much discomfort and putting it on is time consuming so i would appreciate it so so much if you all could help raise the money for it, just like with her tinysuperheroes cape. ill put her nomination link below i believe its $40 but anything over that goes towards helping another lil warrior! Love you guys and if you cant donate could you please just share it? I think this would help her alot ❤
https://hannahtopia.com/shop/warrior/raelynn-w/

Raelynn has Infantile spasms and brain cancer. What makes Raelynn SO amazing is the way she's always smiling!  

12/15/2020

Raelynn's eeg was supposed to be today but we woke up sick this morning and couldn't go 😔 this eeg was so important and now it needs to be rescheduled. I hope this passes quickly and they can get us in before the end of the year. I dont want her on this medication any longer than she needs to be 🥺

12/14/2020

🥰🥰🥰

Let’s support and send love to !

12/14/2020

Guuuuuuys im so excited this amazing woman from tiktok made a tiny warrior sticker for our Raelynn 😭🥰 she did so amazing, its so beautiful and I absolutely LOVE it. You can purchase them from her shop here: https://www.etsy.com/listing/910766102/raelynn-sticker-raelynnstrong-on-tiktok?ref=shop_home_active_1&frs=1

And if you do purchase one of these stickers or one of our shirts (link in bio) please post a picture so we can see it! Love you all 💛

*A percentage of the profit from the sales of this sticker will be donated to Raelynns care directly! Perfect for laptops, phone cases, notebooks, iPad covers, or as a gift for someone! ✨SIZE: Stickers are 3” ✨PROCESSING TIME: Your order is guaranteed to ship within 3 business days of purchase...

12/12/2020

Today i watched another celebration of life (online) for yet another tiny warrior gone too soon 😔 Felicity-Tiny but Fierce. I found this amazing family soon after joining tiktok in a live stream of a charity page, little bricks charity, her mom Nikki quickly became an inspiration and i would say a friend. My heart is broken for them and i cant believe another one of Rae's friends is gone 🥺 please keep them in your thoughts too. You truly were a tinybadass and you will never be forgotten 💜

Being apart of this community is the most amazing thing, to be surrounded by so much strength and love...but its also the hardest, to have to see our friends leave us so soon 💔

12/11/2020

Hey everyone sorry its been a minute but i have another Raelynn update finally, she will be having her 5th (or 6th 🤷‍♀️) EEG on Tuesday the 15th. Unfortunately austin leaves again on Sunday so ill have to drive by myself and find someone to watch miss Faye since siblings still cant go in but we got this. This will be another 2 hr one and hopefully will tell us that we can finally start weaning off of the Vigabatrin. Little monkey hasnt been sleeping very well either but we're hoping its just her age

Also i forgot to let everyone know that i reuped the campaign for her shirts, this new one has 9 days left but ill be redoing it again after. Love you all!
https://www.bonfire.com/raelynnstrong/

Help us spread awareness for childhood cancer while also helping support Raelynn ❤🎗. Raelynn is a sweet 1 year old baby girl fighting against a rare NTRK2 fused infantile...

12/03/2020

This week is infantile spasms awareness week and this is the post i made for tiktok, figured id post it here also. There was so much more i wanted to say in this video but tiktoks are only so long 💜

11/30/2020

We cant thank all of you enough for all your help and support ❤

From Austin,

You have helped tremendously in our time of need. With me being off for 3 months when she was first diagnosed it really set us back alot. But because of the help you have given us we can afford to actually give the girls a Christmas that they both deserve. Thank you to all that have donated/followed us this far.

https://linktr.ee/Raelynnstrong

Linktree. Make your link do more.

11/25/2020

Hey everyone no real updates yet but i wanted to say a huuuge thank you to Anna Milward for sending Raelynn her first package from our Amazon wishlist (from non family) im not sure if youre from our tiktok fam or here so i figured id thank you in both places! She got Rae the cutest lego duplo train set, we're going to save it and most other packages for Christmas but i know she's going to love it! We love and appreciate everything you all do for us ❤

https://linktr.ee/Raelynnstrong

Linktree. Make your link do more.

11/23/2020

Thank you everyone for understanding why we didnt post about Rae yesterday ❤

So as you know her neurologist follow up was the 20th. The eeg (while too short) showed no signs of spams or seizures, there are still abnormalities but thats expected with her tumor. However it was only 30 mins as apposed to her normal 2 hr so they couldn't record any sleep activity so we will be going in for another 2 hr eeg in the next week or 2, if her sleep activity still looks ok then we can discuss the best plan for weaning off of the Vigabatrin. Because Raelynn's case is so rare and unique theyve told us its gonna be alot of trial and error most likely. Another thing we talked about was her side effects from the Keppra between her age, daddy being gone, and everything else going on with her her "keppra rage" has been getting worse to the point of her having violent and just mean outbursts where she ends up hurting either me faye or herself so we're starting her on vitamin B6 in hope that it will help ( they dont know why but in some cases it helps with the mood swings) The last thing we know of is that her next mri will be somtime in the beginning of January

As always thank you for your love and support ❤ there is 7 more days left to order your merch, linked below. We dont expect anything but with things being so tight rn if you would like to help us with the girl's Christmas it will also be in the link below ❤

https://linktr.ee/Raelynnstrong

Linktree. Make your link do more.

11/21/2020

I cant believe im typing these words but...baby Tessa Hodgson's Battle Against Brain Cancer: ATRT, Raelynn's favorite tiktok friend passed this morning 💔 she fought so hard, and touched so many lives, including ours. Please please send them love, prayers anything, Raelynn and Tessa may not have had the same cancer but their family's story is so similar to ours i felt a strong connection to them, and always will. They've been one of my main inspirations to stay positive through this journey and I wish i could do so much more than this 🥺 today is for tessa so i will post Rae's update tomorrow thank you ❤

Tessa was 3 months old when she was diagnosed with a rare and aggressive brain cancer called ATRT. S… Amanda H needs your support for Fighting for baby Tessa

11/18/2020

12 more days to order your shirts (etc)! Bracelets also still available if local (sorry :/) this money will be going to giving our girls the Christmas they deserve. If you would like we also have an Amazon list for the girls, we dont expect anything but its there if youd like to get them something ❤ we love and appreciate you more than you know ❤

https://linktr.ee/Raelynnstrong

Linktree. Make your link do more.