Raelynn fights brain cancer

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Onsted, MI
Raelynn fights brain cancer

Raelynn was recently diagnosed with a NTRK2-fused infantile high grade glioma and infantile spasms. Cashapp: $Raelynnstrong
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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!! 🥳🥰

Address

9887 Stephenson Road
Onsted, MI
49265

Telephone

+15172604010

Website

https://linktr.ee/Raelynnstrong

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