Facing the Unthinkable: Alayna's Story

In this episode of DisLife Stories, host Erika speaks with Renee Wittke, a mother navigating the challenges of her daughter's diagnosis of ependymoma, a rare brain tumor. The conversation delves into the emotional roller coaster of recognizing symptoms, receiving the diagnosis, and the subsequent journey through surgery and recovery. Renee shares her family's struggles, the importance of support systems, and the lessons learned throughout this difficult experience. The episode emphasizes resilience, hope, and the power of love in the face of adversity.

If you would like to be a guest on the show, please contact us at DisLifeStories@gmail.com, or go to DisLifeStories.com and fill out the form.

Transcript

DisLife Stories (00:02.254)
Hi everyone, welcome back to Dislife Stories, the podcast where we dive into real conversations about life, illness, resilience and everything in between. I'm your host today, Erica White. Today's episode, it's a tough one, but also a powerful one. I'm speaking with a parent whose four year old daughter was diagnosed with a rare brain tumor called ependymoma. She's already undergone brain surgery.

And right now her chances over the next five years sit at just under 50%. We're going to talk about what it's like to receive that kind of news, how it's changed their family's daily life, and the emotional roller coaster of parenting through fear, hope, uncertainty. The conversation will probably be pretty raw, but it's also a conversation of love and strength. If you're a parent,

or just someone who wants to understand what these families go through, I think this episode will really stay with you. So that being said, to start.

Good evening, Renee. Thank you so much for being on our show with us. Can you take us back to when you first noticed something wrong or something was off with your daughter, like what the signs were?

Rene Wittke (01:18.212)
Yes, good evening, Erica. Thank you all for having me.

Rene Wittke (01:32.828)
really, now that I think about it since her diagnosis, I would say, you know, it's kind of, it's kind of mixed between, you know, I've heard it's a fast growing and I've heard it's a slow growing tumor. so if it's, if it's a slow growing tumor, it really started back when she was about probably a year old, we had to have,

tubes put in her ears because she pretty much had constant ear infections and due to that she has a speech delay so her ENT suggested the tubes and he said you know with her having so much fluid on her ears all the time it could have delayed her speech

DisLife Stories (02:26.006)
Okay.

Rene Wittke (02:26.308)
But now looking back, it could have been the tumor that was growing. I'm not real sure. That's just my opinion. But when we really started noticing something was wrong was, I would say last summer, she would get to where she would...

DisLife Stories (02:32.216)
Wow. Yeah.

Rene Wittke (02:51.578)
kind of curl up in the fetal position and had her face like in the pillows. She would never tell us her head was hurting, we just figured she was tired. And it come out to be headaches. So she was really started with headaches. And then, you know, that was very so often and then it started with vomiting. She would, you know, it was...

DisLife Stories (03:02.03)
You

DisLife Stories (03:05.518)
Okay.

Rene Wittke (03:16.848)
She would go, she would maybe vomit once a day and then a couple days would go by and she'd do it again. So we just thought it was just, know, maybe it was like a viral infection or something that was getting her sick and she would, you know, she would get over it.

DisLife Stories (03:24.648)
Wow.

Rene Wittke (03:33.456)
And then she didn't you know it just kept getting worse, and it was eventually happening three four or five times a day With the vomiting spells yes And she then she got to where she couldn't walk And we thought it was just a phase you know she just wanted to be you know carried around you know she's she was three at the time So we just figured it was just a phase so

DisLife Stories (03:34.541)
Mom.

DisLife Stories (03:39.317)
Ugh.

DisLife Stories (03:45.398)
Wow.

DisLife Stories (03:56.632)
toddler.

you

Rene Wittke (04:01.178)
So we would just carry around. didn't know it was because there was a tumor. So we were going back and forth with her pediatrician on different medications for like vomiting. They were thinking it was what they call cyclic vomiting syndrome. Because it matched so perfectly with what she was experiencing.

DisLife Stories (04:19.576)
Hmm, never heard of that.

Hmm.

Rene Wittke (04:24.75)
So we did that and none of the medicines were working. Then we referred to a GI specialist and it was just kind of like a couple months of back and forth. And then we just had to take her, we had to take her somewhere else to get a second opinion. And that's when we found out.

DisLife Stories (04:42.872)
So the doctors were kind of saying, no, it's this, no, it's this. you just went, said, no, we're going someplace else. We're getting the answers that we need. When you got that diagnosis of pandemoma, what kind of reaction did you all have? Do you remember thoughts that might've gone through your head?

Rene Wittke (04:54.574)
Yes.

Rene Wittke (05:08.532)
yeah, actually, we, with the way it all happened, she, we took her to Children's, they came back and said, you know, it's a tumor on her brain. And of course that, that throws anybody for a loop, you know, no one really expects to hear that. and so after that, then she had to have the EVD placed on her brain to drain the fluid and stuff off. I can't, no, I don't.

DisLife Stories (05:32.596)
EBD. EBD is like a shunt.

Rene Wittke (05:39.824)
Yes, a shunt. It's like a temporary shunt put in. Yes, sorry. I should have clarified that. But, you know, but she had that put on her brain to drain it off. And then they were like, hey, we're going to have to have we're going to do a craniotomy to get this out. And, you know, they said it's going to take, you know, it take up to a week for the results to come back because they couldn't. They could test some of it in the OR.

DisLife Stories (05:41.344)
Okay. Okay. No, that's okay.

Rene Wittke (06:07.578)
but it wasn't, you know, like a confirmed diagnosis from the OR. It was just kind of like a guideline of what we should expect. And the results from the OR were inconclusive. They couldn't test it. They didn't know what it was possibly. So we were in the hospital while we were still waiting for her diagnosis to come through. And when they came in and they said this big word, I was like...

DisLife Stories (06:07.811)
Mm-hmm.

DisLife Stories (06:12.93)
Gotcha.

DisLife Stories (06:35.47)
it

Rene Wittke (06:36.912)
What is like what does this mean? like I've never heard it

DisLife Stories (06:38.498)
You

Yeah, that...

Phone comes out, Google search, furiously looking words up. Yes. Yes.

Rene Wittke (06:47.408)
Yes, and we tried we tried so hard not to to kind of beat them to the punch because we didn't want to sit here and worry about You know if that was actually Because we I'm nosy I like I read through her her previous Her admission her admission notes from the hospital and they actually put in there what they thought it was So as soon as I read that I was googling like I was like I

DisLife Stories (07:11.726)
Okay.

Okay. Yeah.

Rene Wittke (07:17.488)
I gotta know something. This is killing me. So it was a lot. We were just kinda like, I pinned a mama. What does this mean for her now? What does this mean for her later on? Like what does this entail? Because it's so different and...

They were kind of, you know, we don't see this often at all. So, you if we need to refer out, can refer out whichever y'all are comfortable with. So. Yeah.

DisLife Stories (07:52.6)
was her recovery from that surgery?

Rene Wittke (07:57.566)
my goodness, well you know, it was really hard with her having been sick for a couple months and then being in the hospital where you're being poked and prodded and you know at the hospital she was at, it's a teaching hospital so you would have like 10 doctors coming in one time in the mornings and around on her and she would just, it would figure out which I don't blame her.

DisLife Stories (08:06.766)
Mm-hmm.

DisLife Stories (08:11.438)
Yeah.

DisLife Stories (08:23.042)
Yeah.

Rene Wittke (08:23.266)
So she on top of that, she had to relearn pretty much everything. How to eat, how to walk, how to talk. And she was on the feeding, she had a NG tube, I believe they call it an NG tube where they feed it down through your nose. She was on that for a couple of days because she had lost.

DisLife Stories (08:44.951)
Okay.

Rene Wittke (08:48.432)
my gosh, she had lost, I know, at least four pounds in a week just from vomiting. It was really bad. So we had to do a swallow test so she wouldn't aspirate on her food. So she's sitting there, you know, she's got a black eye and this eye over here is crossed and she's just kind of just there, but she wants to eat food. So we had to do all that and...

DisLife Stories (08:53.602)
Wow. my gosh. That's brutal.

DisLife Stories (09:04.333)
Hmm.

DisLife Stories (09:12.706)
Yeah.

DisLife Stories (09:16.642)
Yeah.

Rene Wittke (09:17.314)
It was really hard, know, we couldn't, with the EBD, there's only so much they could move around without it having to be adjusted to be leveled with their head. So you tell a three-year-old they can't move around, they, you know. It's very frustrating for them. Yeah, so it was a hard one for her, it really was.

DisLife Stories (09:30.634)
It's a toddler. Yeah.

Yeah, well, I mean, is it?

It's got to be frustrating for everybody in that circumstance because, this is your child. You want them to be able to explore and to learn and to grow and knowing as a parent that your child is frustrated like that and you can't do anything. my Lord. Were they ever able to get the entire tumor?

Rene Wittke (09:57.028)
Yeah. No, it's so hard. Yeah.

Rene Wittke (10:07.484)
they were not. From what her surgeon told us was that... Sorry, excuse me. Her tumor was the biggest one that he's ever removed from the posterior fossa. So it was a very large tumor. yeah, he said it was like pretty much meshed to her brain stem.

DisLife Stories (10:17.837)
Mm-hmm.

DisLife Stories (10:25.047)
Wow.

Rene Wittke (10:31.792)
So he had to leave spots on her brain stem just to keep from furthering the complications from the surgery. So I think he was able to get about 90 % out and then he cauterized the other spots on her brain stem.

DisLife Stories (10:39.779)
Right.

DisLife Stories (10:43.436)
Okay.

DisLife Stories (10:48.664)
Does she have more treatment going forward? Are they concerned about regrowth?

Rene Wittke (10:57.29)
They are, they said it's more likely to recur with the group A. So we, she, after she had surgery in September, we took her to Atlanta to be fitted for her radiation mask in October, early October. And from the end of October to like the middle of December of last year, she was getting what they call proton radiation.

DisLife Stories (11:05.262)
Okay.

Rene Wittke (11:26.596)
where it's more of a localized beam to the brain so it doesn't affect all of the, you know, like it's more targeted so it's like, yeah, yeah, so and since then she hasn't had any growths, any new lesions, she's been stable since then so, yeah.

DisLife Stories (11:27.252)
Okay. Okay.

DisLife Stories (11:33.494)
Right, it's not broad spectrum.

Okay.

DisLife Stories (11:45.741)
Nice.

Prayers that that continues, definitely. What would you say has been the hardest part of this journey for you all so far?

Rene Wittke (11:52.546)
Yes, yes.

Rene Wittke (12:02.192)
That's a tough one. It's all been very hard, but I would have to say it has to be the adjustment between having a healthy, happy child to one that we don't know.

DisLife Stories (12:05.592)
Yeah.

Rene Wittke (12:30.68)
really anything about the future other than you know the more it recurs the less chance that they have of being able to respect it all and what the impairments for her can be when she does start getting older and how that's going to affect her and her quality of life. That's really what we're concerned about.

DisLife Stories (12:39.758)
Right?

DisLife Stories (12:49.966)
Okay. Have you had like the grief before grief, where the fear is overwhelming and you almost mourn even though that your child is still there, but there's fears, obviously. Any...

Rene Wittke (13:06.326)
yeah, it's been, I cycle through that one quite a lot. Yeah. Yeah.

DisLife Stories (13:09.07)
I believe it. believe it. What would you say a good day looks like for you all now?

Rene Wittke (13:20.633)
A good day would be

when we, you know, when she wakes up and she's in a good mood and she wants to play, she wants to explore and she acts like she's never been sick. know, yeah. Yeah, so it's, yeah, it's kind of like having a flashback to before this all happened is seeing her.

DisLife Stories (13:40.145)
wow. That's gotta be great.

Rene Wittke (13:51.544)
do the natural things that she used to do. That would be it. That's what we call a good day around here. So yeah.

DisLife Stories (13:58.158)
Well, that's a good thing. What would you say helps you get through the hard days or the really hard ones?

Rene Wittke (14:11.44)
The really hard days, we try to be as optimistic as possible. We try to think it's not gonna be like this forever. There will be good days that come and eventually there will be some kind of breakthrough with the study of the epindomomas and we kind of just...

We lean on those around us to help kind of pull us through because some days, you know, it's hard to hold on to any kind of hope. Yeah. So we really lean on people around us mostly to help get us through.

DisLife Stories (14:44.835)
You can't. Yeah.

Gotcha. So you've got a good support system around you. mean, siblings or your parents or friends got a good support system there for you.

Rene Wittke (15:04.571)
Oh yeah, yeah, we have a great support system. She has a she actually has an older sister Her name is Riley. She's uh She'll be 13 this year. So she Yeah, I had it had him eight years in between Yeah

DisLife Stories (15:14.812)
wow!

DisLife Stories (15:21.122)
five years in between hours and in a way I'm grateful for it.

Rene Wittke (15:24.172)
really? Woo, yeah, yes. So she helps out a lot. you know, but you know, she also has her struggles and everything with, you know, what's been going on with her sister. But, you know, we've got her, we've got...

DisLife Stories (15:39.726)
How is Riley handling it? If I can interrupt, how's Riley handling it?

Rene Wittke (15:44.634)
She's... no, go ahead. Yeah, she's... She has her days where she's kind of... She's more reserved. She kind of just keeps to herself. You know? That's kind of her way of how she deals with it is just to kind of just stay back to herself. But... We try to tell her in a way that it wouldn't... I mean, it's already scary telling her.

DisLife Stories (15:55.702)
Okay. Yeah.

Rene Wittke (16:13.038)
but not to terrify her with what can happen. We kind of want her to not be scared that if she bumps her sister, it's gonna hurt her even more. We try to keep her to where she knows that her sister is still a child and it's okay to play with her. sometimes, Elena does, it's normal for her age and it's kind normal for her circumstances.

DisLife Stories (16:13.632)
Mm-hmm. Right.

DisLife Stories (16:34.25)
Hahaha

DisLife Stories (16:40.942)
Okay, gotcha. What would you say you wish your friends or even strangers understood more about what you're going through?

Rene Wittke (16:59.44)
That's a good question.

It's, I guess it would be that.

It's.

Rene Wittke (17:17.668)
I don't know, it's...

It's harder, it's hard having kids and it's harder having children who have such a disease that are not healthy.

you know, that they don't respond the way that a healthy child would. You know, and I'm not saying any of our friends or anybody thinks this, but it's different and there's different things that go on in our life that we have to be especially careful of. You know, that she can't...

She can't go out and play like contact sports or anything like that that could hurt, give her a head injury. So that's different as well. we're really, we're really kind of what you call it. Oh, yeah. So it's, our life looks a lot different than, you know, there's do and there's did, you know, with healthy children. And it's a lot more mentally taxing.

DisLife Stories (18:05.038)
Okay.

DisLife Stories (18:12.191)
a hamstring.

DisLife Stories (18:16.321)
You

DisLife Stories (18:24.504)
Mm-hmm.

Rene Wittke (18:28.866)
than what they really, than what we let them see. So that's what I would say.

DisLife Stories (18:34.872)
Gotcha. Okay. And I mean, despite everything that's going on, know, obviously you're all you're there for her. You're showing up every day. You're pulling on that strength. What would you say is giving you that strength to keep that fight going for your daughter?

Rene Wittke (18:54.608)
She definitely gives me the strength. can look at her and can just say, I'm an adult, but she's a four year old and she is... I've seen her go through some horrendous things and I look at her and say if she can do it, I can definitely do it. he gives me the strength, so yeah.

DisLife Stories (18:57.422)
Yeah.

DisLife Stories (19:11.587)
Yeah.

DisLife Stories (19:18.605)
Yep.

DisLife Stories (19:22.22)
That's awesome. No, that's awesome. Well, are there any little moments either recently or in the past, you know, just a laugh, a look, hug, anything that you would say just was especially specifically remembering meaningful for you?

Rene Wittke (19:24.29)
Yeah.

Rene Wittke (19:48.718)
like since since her diagnosis or is it just in general?

DisLife Stories (19:53.326)
Well, in general, mean, whether it's since the diagnosis or even pre diagnosis, because obviously, you know that things were occurring before you even received the diagnosis. And she was already having health issues that you were concerned about.

Rene Wittke (20:10.862)
Yeah, I would think that the first time that I was able to hold her after her her craniotomy when I was, you know, like she was asking me to hold for her to she was asking for me to hold her and you know, I had to get the nurses in and they had to she had all of this stuff hooked up to her. So it was just, you know, it was

DisLife Stories (20:25.102)
Okay.

Rene Wittke (20:39.854)
hard work getting her out of the bed to where I could hold her. And, you know, we got her settled and I mean, she laid on me for like an hour after her surgery. And I just thought, you know, this, it's these little moments in the storm that just kind of help center you a little bit more. And it brings you back and kind of grounds you, you know, knowing that you're still that person for them.

DisLife Stories (20:49.066)
DisLife Stories (21:04.558)
Mm-hmm.

Rene Wittke (21:09.924)
They still, you know, they want you when they're scared and that you can still have that moment with them despite everything else going on. It's really a sweet moment, so.

DisLife Stories (21:10.275)
Yeah.

DisLife Stories (21:20.526)
You

That's it. Actually, there's a line in a movie that I saw once and main character tells someone, Mother is the word for God on the lips and hearts of all children. And what you just said kind of, kind of brought that all to a point.

Rene Wittke (21:43.204)
Gosh, I love that. I'm gonna remember that. Certainly. my goodness.

DisLife Stories (21:44.11)
What would you say this process has taught you or taught your husband, your daughter, as a family, as individuals, what unexpected truths did you learn about yourselves during this process?

Rene Wittke (21:51.376)
You

Rene Wittke (22:10.576)
It would definitely be... Our unexpected truth, I know mine for sure would have to be... Just how...

strong.

You know, I really had to dig down deep to make it through this without completely losing it.

So, yeah, mom would, you know, I knew I was strong, but I didn't know I could be this strong. And it's, I guess it's different when it's your children or someone you love. You really find that reserve in you and you pull from that reserve to get through. So that would definitely be my truth, you know. Yeah.

DisLife Stories (22:45.24)
Okay.

DisLife Stories (22:55.47)
Gotcha.

DisLife Stories (22:59.438)
Awesome. If you could give a piece of advice to someone that is just starting out, sadly, or unfortunately on this type of journey, what advice would you give them?

Rene Wittke (23:19.248)
I would say that, you know, it's okay to feel all the emotions. It's okay to handle it, you know, the way that you need, whether it's, you know, screaming into a pillow or going to a rage room and letting out all of the rage, you know, because it's hard to deal with. Yeah, and I know...

DisLife Stories (23:39.619)
Yeah.

yeah.

Rene Wittke (23:47.888)
We got a notebook, so anytime we went to the doctors, the doctors came in the room, wherever we were, if we were around doctors and it pertained to her, we had our notebook and we would write down everything. Write down everything, saved us so much.

Because when you're unfortunately in this situation, there's a lot of things going on at once and a lot of information being shared. And you're already sidetracked by what you've just been told and what you need to remember. So a notebook.

DisLife Stories (24:19.243)
Yep.

going in that rabbit hole of not my child, right? Yeah.

Rene Wittke (24:26.64)
Yes, exactly. Yes. That's exactly what it is and you know, it's Be compassionate with yourself, you know, it's it's hard you don't need to be any harder on yourself you're doing the best you can and Be the best advocate for your child that you can because no one else can do it for them, but you If you ever have any second thoughts

Anything, always push for a second opinion. Even a third opinion. If it doesn't sit right with you, follow through with it. It could make a world of difference to your child. know, depending on the hills. Yeah, that's what I would say. Just be compassionate with yourself. Be easy on yourself.

DisLife Stories (25:15.154)
that parental instinct when it tells you something, right?

Rene Wittke (25:18.99)
Yes, because it's never wrong.

DisLife Stories (25:22.712)
So what are, I'd say, what are the, I guess, thoughts from the doctor, know, one year from now, five years from now, 10 years from now, they give you any type of potentiality or anything like that, what you're looking at moving forward?

Rene Wittke (25:46.422)
moving forward, they said, you know, it's really, it's unpredictable. You know, can recur anywhere from months to years afterwards. So, you know, she could be, you know, falling back into normalcy and then bam, you know, it comes back and it's, they say it usually comes back in the same spot. or...

DisLife Stories (25:58.434)
Okay.

Rene Wittke (26:11.906)
And they said it really comes back in the spine in children. So they said just look for the same signs that she was showing earlier before her diagnosis, just for that. They said, and the more radiation that she receives and the more craniotomies she receives, the more deficiencies she's going to have mentally and physically.

DisLife Stories (26:16.429)
Okay.

DisLife Stories (26:38.157)
Yeah.

Rene Wittke (26:40.208)
which you know, that's, hard to deal with because you know, your brain is your control center. It controls everything. So anything being messed with up there, it doesn't always, it doesn't always, it's not always good, but you know, the therapies, know, speech therapy, physical therapy, all of that, you know, we can help regain some kind of normalcy, but.

DisLife Stories (26:45.246)
Yes. Yeah.

DisLife Stories (26:57.389)
Right.

Rene Wittke (27:07.268)
They did say that the chances of survival go up with the more that they get out. If they can do a full GTR, which is the gross total resection, the better her chances of survival are. But with her subtype,

DisLife Stories (27:21.954)
Mm-hmm.

DisLife Stories (27:27.5)
Mm-hmm.

Okay.

Rene Wittke (27:34.072)
they're harder to completely reset because they're so aggressive. So they haven't.

DisLife Stories (27:38.798)
Gotcha.

Rene Wittke (27:43.78)
They haven't given us.

a prognosis. I don't know if it's just her just her oncologist not wanting to really just throw that on us or if it's really just that uncertain but just from what I've read it's it's like I think a 49 % chance for five-year yeah which you know it's it's not zero so

DisLife Stories (27:51.415)
Okay.

DisLife Stories (27:58.189)
Right.

DisLife Stories (28:12.75)
Okay, it's better than 20, it's better than 30, you know?

Rene Wittke (28:17.584)
Yeah, so that's what we're holding onto right there is that 49 % of it being okay. So yeah, so that's kind of what we've been told.

DisLife Stories (28:23.134)
Yeah.

DisLife Stories (28:27.598)
Has she demonstrated, aside from all the things she's had to relearn, have you noticed any potential deficiencies due to either the resection or the radiation?

Rene Wittke (28:46.204)
yes, actually, they- now, they said it does not affect behavior, but I don't know if it's just something that she's going through, you know, a phase right now, but she, I've noticed a lot of frustrations.

Especially, know, which when she can't speak what she needs to speak she she gets hung up on her words And she has to go back and instead of trying to repeat that one word She has to repeat from the beginning of the finance And then she still gets hung up on the same part. So it's it's a cycle and that gets her really frustrated Another thing is is we have not been a we have not been able to get her fully potty trained which she was in the we were in the middle of

DisLife Stories (29:16.366)
Gotcha.

DisLife Stories (29:36.001)
Okay.

Rene Wittke (29:39.952)
using the potty and stuff when she got her diagnosis and since then she wants nothing to do with it and she you know she'll go a couple times unprompted successfully but it's never consistent and then I would say oh my goodness what was I gonna say her attention

DisLife Stories (29:44.344)
Okay.

DisLife Stories (29:48.236)
you

DisLife Stories (29:55.214)
Okay.

Rene Wittke (30:05.69)
Her attention span, which you she's four, we expect that from a four year old, it's kind of like... Yeah, yes. Yeah, she's very... But she'll... We can call her name. You know, we'll say Elena. And we'll be right beside her. She will not hear us. She won't answer us.

DisLife Stories (30:05.976)
Okay.

DisLife Stories (30:11.374)
Squirrel.

Rene Wittke (30:35.566)
which I'm gonna get her set up for a hearing test because that part of the radiation to the brain they said can make her go deaf. So we're gonna set her up for a hearing test after that. I'm gonna remind myself of that. We'll call her name a couple times if she won't answer.

DisLife Stories (30:46.26)
good Lord.

Rene Wittke (30:56.24)
But we're you know, we'll be right there beside her and we'll say it loud enough. We know she can hear us. She won't answer. She won't respond. And then she either talks really really low or she she'll yell. So it's it's kind of like especially when she's trying to get your attention. She'll she'll kind of just whisper it to you and you'll be like, what did you say? And she'll go, ah, you know.

DisLife Stories (31:15.884)
extremes

Rene Wittke (31:27.12)
So, you know, it's kind of, you know, one or the other. I call it, you know, quiet or ACDC, you know, it's one or two from her.

DisLife Stories (31:31.054)
extremes.

Rene Wittke (31:39.351)
No.

DisLife Stories (31:39.566)
classical or heavy metal?

Rene Wittke (31:42.446)
Heavy metal. Right? Yes. But yeah, those are just...

DisLife Stories (31:47.278)
But it's so this the frustration you mentioned she feels is that something that PTOT addresses with her or is there a therapist that she sees that helps with those kinds of things for her?

Rene Wittke (32:05.232)
We have not been able to my goodness we've been on the list for speech and They said she didn't really need occupational therapy, so we didn't follow through with that She seemed to be doing fine at the time, but now that you know things seem to be getting a Little rougher for her we are gonna look into the the occupational

DisLife Stories (32:29.645)
Right.

Rene Wittke (32:32.656)
But we've been waiting for a speech appointment for about six months now. Yeah, so we waited and it came up time for the first one and it had to get rescheduled. so it's really hard to find those kind of resources around here without it being an extremely long waiting period.

DisLife Stories (32:51.67)
Okay.

DisLife Stories (32:56.2)
that's terrible.

Rene Wittke (32:57.06)
But we're hoping that speech helps. We'll get her back into speech therapy because she was in speech therapy before her diagnosis was even confirmed, which we think that also went with the tumor. So we're hoping speech therapy helps get her to where she can vocalize and not be as frustrated when she can't get it out.

DisLife Stories (33:09.119)
yeah.

Rene Wittke (33:24.936)
which, you know, I would be frustrated too when I get hung up on words, but, yeah. Yeah. But aside from that, that's really what we've, what we've been dealing with. So.

DisLife Stories (33:25.24)
Cha cha.

DisLife Stories (33:28.878)
Yeah, me too. Me too.

DisLife Stories (33:41.102)
Okay, so I'm saying, you know, she grows up, it's years into the future and she comes across this. What would you want her, what kind of message would you want to give her?

Rene Wittke (34:03.6)
to never ever ever doubt herself and what she is capable of and that she is far much stronger and braver than she will probably ever give herself credit for and she can truly do anything that she wants to her mind to it's just it doesn't define her you know

DisLife Stories (34:03.95)
You

Rene Wittke (34:33.272)
It's just something that she's been through.

DisLife Stories (34:33.976)
That's it.

DisLife Stories (34:39.553)
Yeah.

Rene Wittke (34:40.314)
and that she knows that we're always here to help her and love her and support her through whatever she may want to do. That she has been a light for so many people and her strength has pulled so many people through and that she never doubts herself because she is one resilient child and she'll grow up to be one resilient adult so that's what I would want her to know.

DisLife Stories (35:02.734)
you

DisLife Stories (35:06.23)
You

That's awesome. Okay, is there anything that I haven't asked that you would want to tell the people out there?

DisLife Stories (35:25.029)
You

Rene Wittke (35:33.744)
Um, you know, I can't really think of anything, honestly. I really can't. Yeah.

DisLife Stories (35:41.738)
Yeah. Well, it's it's it's a mind bender. I honestly believe going through something like this. There's there's there's no question about it. This is this is your child. It's it's everything. And I hope that everyone listening say a prayer for Elena, say a prayer for the family.

that it continues to be good news that we don't see regrowth. And you know, leave a comment, leave a like whether it's supportive, whether you know, this is something that you've been through and you want to leave words of support or even contacts to help anything that can help. That's what we're trying to do here. Build a community to support each other so that in this

instance, Renee, your whole family, you know, you're not alone. There's people that care. There's people that listen. For those of you out there, you're not alone. There are people that care and listen. But Renee, thank you so much for spending the time with us this evening. I greatly appreciate it. And I'll keep saying prayers for your whole family, you know, and

Rene Wittke (36:59.62)
Thank you, Erica. I do as well.

DisLife Stories (37:09.506)
keep up the good fight and keep up the positivity. mental health, physical health, it's cyclical. So we just keep going that way. And for all of you out there, you know, comment, like, subscribe, and we're going to wrap this one up and we hope to see you on the next show. Thanks.

Rene Wittke (37:19.864)
Yes.

Rene Wittke (37:40.24)
Thanks.