In this episode, we talk with Rachael Sommer, a dedicated mother and caregiver from Cleveland, Ohio. Rachael shares the journey of her daughter Maddie, who was diagnosed with Hepatosplenic T-cell Lymphoma in October 2023, after several months of mysterious symptoms. Treated at Nationwide Children's Hospital in Columbus, Maddie's condition has profoundly impacted their lives.
Rachael recounts their initial stay at the Ronald McDonald House post-diagnosis, highlighting the physical and emotional changes Maddie experienced. Maddie's extreme fatigue and breathlessness were particularly challenging, and Rachael emphasizes the importance of adjusting to a "new normal" while staying in constant communication with doctors. Rachael found solace in the Ronald McDonald House's facilities, specifically the fitness room, which helped her manage her own stress.
The conversation shifts to the emotional toll on Maddie, who struggled with isolation from friends and the mental burden of not being able to participate in normal activities. Despite the support of friends and thoughtful gestures like sending cards, nothing could replace the physical presence of her peers. Rachael's creativity shone through when she set up a Google camera to allow Maddie to see her cats, Binks and Leon, while they were away.
Rachael discusses the importance of recognizing and respecting individual emotional needs. Maddie’s withdrawal from activities she once enjoyed, like listening to music, was particularly hard for Rachael, who feared losing her daughter's spirited personality. Eventually, Maddie slowly began to regain her sarcasm and interactions with her younger brother, Ezekiel, signaling a return to her usual self.
The financial strain of Maddie's illness is another significant aspect of their journey. Rachael praises the support from various organizations, including Carrie's Cause, Fight Like A Dozer, and the Leukemia & Lymphoma Society, which provided crucial financial aid. This support allowed Rachael to focus on Maddie's care without the added burden of financial stress.
Rachael also shares her career transition to consulting, driven by the need for greater flexibility to support her family. Her faith in God has been a cornerstone throughout this journey, providing spiritual strength and community support.
Finally, Rachael reflects on the importance of savoring small moments of joy amidst the challenges. She encourages other caregivers to focus on what truly matters, finding moments of normalcy and joy, and maintaining hope and strength for their loved ones.
Resources:
Nationwide Children's Hospital, Columbus, Ohio: https://www.nationwidechildrens.org/
Fight Like a Dozer: https://www.fightlikeadozer.org/
Leukemia & Lymphoma Society (LLS): https://lls.org/
NMDP (formerly Be The Match): https://bethematch.org/
The Bible Recap: https://www.thebiblerecap.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Peggy Burkhard:
Welcome everyone. So, today we have with us Rachael Sommer from Cleveland, Ohio, and she's a caregiver to her daughter Maddie. Rachael's going to share her thoughts today about being a caregiver and a mom. So, welcome, Rachael. So, happy to have you here today.
Rachael Sommer:
Thank you, Peggy. Thanks for inviting me and allowing me to share our story.
Peggy Burkhard:
Great. Let's get started. So, let's have you talk about Maddie and her diagnosis and her transplant just to kind of set the scene.
Rachael Sommer:
Yeah, just a little context. Last July 2023, my daughter started getting sick with kind of a mystery illness. We were here in Cleveland getting treated at Rainbow Babies & Children and went through a lot of testing over several months and could not figure out what was going on.
Her spleen was getting really huge, and we ended up going twice for a second opinion to Nationwide Children's Hospital in Columbus, which has been great and we're so grateful for the team.
But on October 16th, I believe it was of 2023, Maddie received her diagnosis of Hepatosplenic T-cell Lymphoma, which they were able to diagnose from a bone marrow biopsy down in Nationwide Children's Hospital. And she is 12 and she'll be 13 on July 4th this year.
Peggy Burkhard:
Thank you, Rachael. Thanks for sharing that. So, we're going to move now to talking about when Maddie got home. What was expected, what was unexpected, and what did you learn from all of that?
Rachael Sommer:
It was interesting because we didn't go straight home since we were at Nationwide in Columbus, we stayed at the Ronald McDonald House for a little bit. And there she was pretty okay, I guess I would say. She was tired, but she wanted to do things and be a little bit active.
And so, we were there about almost a month, and then we came home, and I just was surprised at how differently things changed so quickly. She was sleeping a lot. At some points it would be 6:00 PM and she hadn't even gotten up for the day.
I was really worried, but the doctors told me that that's a normal reaction as a side effect of radiation as well as just being out of breath from very simple things like walking down the stairs or I don't know, closing curtains, things like that.
So, I just had to kind of adjust to a new normal and just be in communication with the doctors and check on things and see how that affected her. I think for me it was just dealing with the nervous energy that I felt being worried about her and finding ways to deal with that.
So, shout out to Ronald McDonald House because they have a fitness room and like to work out to get out my nervous energy. So, that was really helpful. And being able to cook there is helpful as well.
Peggy Burkhard:
That's great to hear. When you mention the fatigue that is so real. We hear that again and again. I talked to a woman the other day who said, just getting to the bottom of the driveway to get the mail, she couldn't even do that the months and then now she's walking two, three miles a day. So, we do hear that. And we know it's temporary, but it's so hard to accept, I think.
Rachael Sommer:
I just think it's especially hard when you're a kid and you're seeing all the things your friends are doing and can do or things that you used to do, and you can't. And so, I think even having visits with friends has been helpful but hard because she even apologizes to her friends. Like, “I'm sorry, I'm not more active. I'm just so tired.” And of course they're understanding, but mentally it's hard.
Peggy Burkhard:
I could imagine. So, Rachael, let's talk about the emotional and social wellness aspect of early survivorship. How that went for you and for Maddie.
Rachael Sommer:
So, I was just talking about her friends. I mean, being away from friends was really hard and even though we have great technology, obviously now FaceTime is just not a replacement for spending time with kids.
And especially I think kids these days, when I was a kid, we used to talk on the phone for hours, kids don't talk on the phone these days.
Peggy Burkhard:
They don't.
Rachael Sommer:
We’ve tried to even figure out gaming systems and things like that, but Wi-Fi at the hospital and all the connectivity issues made that hard and kids all play different gaming systems. And so, the schedules, it was just really hard to connect.
And we had a lot of people sending cards and notes and things that really, I'm grateful for. And she's grateful too, but she was like, “Mom, I just want to see my friends. I don't want one more card.” And you feel bad because you don't want to tell people like, “Don't send us cards,” because it's very thoughtful, but it's just like what does she need right now?
And another part of that was her cats. So, she has … last summer right around her birthday time, she got two kittens. Their names are Binks and Leon. And so, she really missed them, and it took me a while to figure it out, I don't know why I didn't think of this earlier.
But towards the end of our hospital stay in recovery in Columbus, we did finally get a Google camera to put in the house and so we tried to look at the cats playing in the house and talk to them through the camera and stuff. So, that was really fun for her.
I think I had to adjust my expectations of her emotions and my emotions. We have different love languages and the things that comfort me were not the things that comfort her. So, even though she liked music, she kind of stopped liking music for a while.
She didn't want to hear singing, she didn't want any music on, she was really quiet. When we got home, she barely spoke. I was really scared that I had lost her in the sense of her personality and her-
Peggy Burkhard:
Spirit.
Rachael Sommer:
Her sarcastic nature, all those things that maybe sometimes drove me crazy before. So, that was pretty nerve wracking initially and then she's slowly starting to get back to herself. She's definitely getting angry at her brother and yelling at him. So, that's a good sign.
Peggy Burkhard:
That's funny.
Rachael Sommer:
And being sarcastic to me. So, I'm now grateful for that. I think for me it was just a lot of anxiety, a lot of worry. I'm a very active person. I have a lot of energy and so to not feel energy and to feel like I can't get out of bed, can't wake up.
Like today I got up at four, I usually get up around 4:20 and go work out. I couldn't get up because I'd just be so down and worried. I felt kind of isolated even though there's a lot of people around supporting, but it's just like they don't know I guess exactly what you're going through. And it's not their fault, everybody's trying to do their best they can to be helpful.
So, sometimes I just felt like I didn't always use the best coping mechanisms. I can be honest and say I probably drank a little too much during this time and it's something that I had to work on. But I did meet people through Facebook groups and that was really helpful.
And I met two other parents who had kids who went through this exact same cancer, which was very helpful because I didn't think I was going to meet anybody with how rare this cancer was. And that was a big helpful support to me emotionally.
Peggy Burkhard:
That is great to hear. We're talking about the caregiver and this whole season is about the side effects of transplant and getting home and I'm so glad that we have the chance to talk to a caregiver and Rachael, I just appreciate how real you are about it.
It is not easy for the caregiver, and I was just thinking how I hear often that you're home now, everything's fine. She got the transplant. Let's get back to our friendship and our life. And it is not like that at all, is it?
Rachael Sommer:
No, definitely every little thing that happens, even minor things, you're wondering like, “What's wrong now, did something happen?” Or sometimes it's something that you don't think is necessarily something to be concerned about, but you contact the doctor anyways because you're just so used to sharing with them.
So, recently Maddie started having night sweats and I guess maybe through all this, I haven't been paying enough attention to everything, but I did contact the doctor and I was like, “Oh, hey, she's been having some night sweats, and it might not be anything, but I just want to let you know.”
And they were like, “Well, we're going to have you come in next week,” when we weren't even supposed to come into clinic. And then they had us do a bone marrow biopsy the following week, which was last Monday.
And I tried, like you said, it's like you want to think everything's back to normal and things are going okay, and I tried not to make a big deal out of it. And I'm like, “I'm sure it's just a fluke.” Even some of my friends were like, “Maybe it's the change of season or whatever.”
And they called us on Wednesday while we were on our way to a family trip. That was actually a trip we had rescheduled that we had to cancel when she got her diagnosis last fall. And the doctor let us know that it does look like they're seeing signs of the cancers returning. So, I guess we can officially say she's relapsed now.
So, it's like, yeah, once she got the transplant everybody's like, “Oh, isn't this great. Things are better now.” And I said, “I don't think I'll feel better until two years from now when I'm told like they say two years out, it's a good sign, it's not coming back.”
And I think it's just like that six sense you have, like you don't know what's going to happen. And so, unfortunately that sixth sense was correct, I guess.
Peggy Burkhard:
Oh, Rachael, I'm sorry to hear this, but I will tell you that we hear often that there's a relapse and it seems way more often than not they figure it out and then it'll be the next chapter. And we will all be thinking of you and Maddie of course, and your family and hoping that is the case.
And I so appreciate you being with us today. Boy, you're sure keeping this real and I think people are going to really appreciate this.
So, Rachael, Maddie eventually needed to get back to school of course, could you explain what that transition was like for her?
Rachael Sommer:
Yeah, advocating for her education was definitely challenging. So, her school is very supportive but it's small and it's a charter school. She actually goes to a dual language immersion school. So, she's been learning Mandarin in the immersion settings since she's been in kindergarten, but they don't have the resources like our school district would have.
So, initially we were provided weekly sessions with her IEP (individualized education plan) specialist for about one and a half hours which may or may not have always happened because we were in the middle of treatments and she was not feeling well, things like that.
And then the Ohio state requirements state that kids who are on medical leave should receive five hours a week of instruction. As a charter school, they're exempt from that requirement. They were trying to do their best to find an itinerant teacher to still provide her that five hours, even though they weren't required. That process started in November, and it took until March to find somebody unfortunately.
And then that started, we had one person who started for a week and then they quit and then we found another person in April. And now the school year's almost over. So, I think obviously her physical health is the most important right now, but it's definitely something that I worry about.
She's in seventh grade, about to be in eighth grade, middle school is a pretty big time for kids. I remember being very overwhelming at thinking about going to high school and all the things you have to be prepared for.
I recommend that parents work with a hospital social work liaison for the school to help communicate and coordinate and connect them to other resources. The one we had was really helpful and I'm just going to try to make this all work.
Peggy Burkhard:
You definitely have a full plate my friend. Let's talk about some of the other things that were unexpected. You had mentioned to me, and I really never had thought about this, the limitations with being outdoors and we all know from COVID, I mean, thank goodness we could be outdoors, but how did that go?
Rachael Sommer:
I knew she wasn't going to be able to go back to school this year, so I learned anyway. And being in crowds like that made sense to me because of the immunosuppression, her immune system being replaced. But I just didn't think that there was going to be so many limits on the things that we could do outside.
Some of the big things that are hard for our family that she can't do are things like no bonfires, which always surprises people, but I guess it's because mold and wood spores, I don't know, fungus that's in that.
No swimming, like public pools or creeks. We love going to our local metro parks and playing around catching frogs or toads or which we definitely can't, she's not allowed to touch animals, but they even told us to wear a mask in the garden.
Peggy Burkhard:
Really?
Rachael Sommer:
Yeah. Because of the flowers, I guess now. I can't say I've always followed the role to a T, but …
Peggy Burkhard:
That seems a little odd.
Rachael Sommer:
Yeah, one of her first weeks out, she really just wanted to get outside, and I was begging the doctor. Like, “Can we please take her to this..” Columbus has a really nice zoo. And I was like, we put on a mask and gloves and like finally got — I think she got worn down and she was like, “Okay, but go at a low traffic time.” So, we did. I like to push the boundaries, I guess.
So, all these things are kind of big no-no’s for the first six months at least. So, it just makes it really isolating at times for social events and activities. I think now being summer and a lot of friends are thinking like, “Oh, at least we can see Maddie and do activities outside,” but we have to be careful with what we do. Make concessions within reason, I guess.
And I try to find places where I can take and push her in the wheelchair when she's too weak to walk. We even did this drive-thru animal safari thing. Hopefully my doctor's not listening but now we had masks and gloves on during that time. It was from the car, but so just trying to get creative about ways because she can still do fun things.
Peggy Burkhard:
I'm sure you were fine. And what a great mom you are. My goodness, it's so creative too. I was thinking about the garden thing, maybe it was even the allergies.
Rachael Sommer:
Yeah, it definitely could be. There's a lot of things floating around from the flowers. Actually, this weekend I was telling Peggy we went to a new river gorge in West Virginia. We let her do kind of one big excursion since she couldn't really hike much or anything.
My husband and my daughter went on a zipline tour. And so, it was like a series of seven different zip lines and my husband's totally afraid of heights, but he did it for her. He said at one point they had to lean forward and fall off like some kind of building or something on the zipline.
And he was just like, she wanted to go first on all the things, and it was good for … I mean there was a little bit of walking and he had to help her a little bit. But she loves thrills, so that was kind of a great option for her and really fun memory for the two of them.
Peggy Burkhard:
Oh, boy, that sounds like fun. Now Rachel, you mentioned earlier that Maddie has a younger brother?
Rachael Sommer:
Yeah, I have a son, his name is Ezekiel and he'll be six also in July, but at the end of July. So, she kind of … they used to play and get along a lot more. Now he's the annoying little brother now that she's kind of 13 almost, so-
Peggy Burkhard:
Yes. She's almost a teenager and that's a good sign when her little brother's annoying, right?
Rachael Sommer:
Yeah. She's always correcting him. I saw my parents this weekend too and they were like, “Oh, I guess Maddie's the little mom now, we should be celebrating her for Mother's Day.”
Peggy Burkhard:
I have one of those at home too. She seems to run the show with her brothers. I don't know that that's going to change much.
Well Rachael, I understand that you have a strong faith and I love this conversation because I do as well. Tell us about that.
Rachael Sommer:
Yeah, definitely staying connected to my faith. And rather than faith, I think I would just say God because I think faith can sometimes get put into this category or this idea of religion and some of the negative perspectives around that.
But I think being connected to God and being surrounded by those who are there for me also and as believers and who could just be with me where I was at with spiritual encouragement was really helpful.
I would say for the most part people were really good at not doing the cliche things. Like saying, “Oh, well, God only gives us what we can handle,” and it was just really important to be able to feel free to be real with myself and with God about where I was at any moment.
Even if that meant being angry or expressing frustration or not understanding and people letting me know that it was okay if I couldn't even find the words to pray because I definitely just couldn't even speak sometimes.
I still struggle to speak the words that I'm thinking, but they would just pray for me and lift me up when my heart was just in despair and I'm really grateful for that and grateful for what I've been learning in my reading and in the Bible and other people.
I mean I'm going through a Bible in a Year reading right now, which I've never done before. Because I guess I found it too boring maybe before, I don't know. But now I'm reading about David, and it's called the Bible Recap. The way it's set up, it pairs the story of David with the Psalms.
So, you're reading about like the chronological series of events, but then also his Psalms and not all of them were praises. Like a lot of times, he was crying out in distress but still acknowledging that God had a plan. And that's been encouraging to me and something I'm trying to hold on to especially with where we're at today.
Peggy Burkhard:
Wow, I'm going to have to check that out. Thank you for sharing that. So, Rachael, we had talked a little bit about financial resources. This is such an important topic for listeners. They just are not aware of all the different organizations.
I know you're already mentioned the Ronald McDonald House. Would you mind sharing some of the best finds that your family found?
Rachael Sommer:
Yeah, I really had a lot of help from our hospital social workers. So, there was a social worker that helped with school stuff, but there's also just like a social worker that helps in general. And she and I had a great time because I also have a social work background. So, we just had fun talking about stuff together.
But they were very aware of different grants both nationally and locally and she connected me through to several local organizations. One is called Carrie's Cause in Columbus, Ohio, if anybody here is from that area.
And they're also a family that went through this and they were really helpful with just especially with us being out of town, they would send us gift cards for groceries and gas and things like those basic needs.
There was another organization and I'm trying not to blank on the name right now because they were awesome. It's another small family organization and for four months they paid for our mortgage and Fight Like A Dozier.
Peggy Burkhard:
Great.
Rachael Sommer:
I just wanted to give them credit because they don't have any staff or anything. It's just this dad who's been through it and he's so awesome. I know that's very like Ohio local, but they also connected us to other national organizations that had mini grants or different things to support families.
Peggy Burkhard:
And also, Rachael, LLS.
Rachael Sommer:
The LLS, I was just going to say that one. And the BM, what's the BMT one? I think it's Be The Match.
Peggy Burkhard:
Oh, well that's NMDP, Be The Match. They just rebranded. Rachael, we'll be sure to include all the links in the show notes.
Rachael Sommer:
Thank you. But I also wanted to mention too, where I had a family friend who set up kind of like a GoFundMe type thing, which was immensely helpful and it's hard to take help sometimes, but sometimes you just have to take help.
And it really is what allowed me to take the time off work as I needed to support my daughter. And I really could not have done it without all our friends, families and strangers that just donated incredibly generous. So, I just say, don't be ashamed and accept the help.
Peggy Burkhard:
I love that. And it's so true. And that's perfect segue. Let's talk about your career.
Rachael Sommer:
Yeah, thanks. So, because of the situation I was in and some of the financial burdens being lessened, that really gave me the ability to move my career into a direction that I've been wanting to go in a long time, which is into a consulting role.
So, I've always wanted more flexibility to work and provide for my family while also having the space and ability to be there for my family in general, but now specifically with my daughter through this situation. And the job I had was a great job, but I just couldn't have that level of flexibility.
So, I just think that God put things in place and his perfect timing for our family despite the anxiety, the fear and hardship, I realized none of us are alone and that there's a community that wants to help us.
And I just feel even more confident now that I made the right decision when I did it at the beginning of this year to transition into starting my own business because obviously this journey's going to continue to go on for some time and I need to be able to prioritize my daughter.
Peggy Burkhard:
Absolutely commendable, and so important to have that flexibility. Oh, Rachael, this has been just so great to talk to you and again, we are here for you, we're thinking of you and your family. As we kind of get ready to wrap things up, do you have any tips or anything we may have missed? Anything you want to add? I know you have a lot on your plate right now, so-
Rachael Sommer:
Yeah, I think just, I don't know, it is kind of cliche, but I was thinking about it again this weekend when we got this news, we decided not to tell our daughter yet, we have an appointment tomorrow.
My husband and I decided let's just try to enjoy this time we have together and focus on what matters right now. And like any trip or vacation, there's still things like people get irritated on each other's nerves, there a few tears shed, but it's like we were able to kind of bring it back to like, “Is this what matters right now?” Let's focus on what's most important.
And I think just trying to hold on to those moments, getting to have an ice cream cone with my kids or picking up … my daughter found like a snake skin on the trail when we were walking, which sounds crazy, but she loves snakes.
And they were laughing because they were putting bugs and stuff on my husband's shirt, like those little moments. I just tried to close my eyes and hold on to them.
Peggy Burkhard:
Take it all in.
Rachael Sommer:
Because for a moment you can laugh. And for a moment, things can feel normal in a space that's not normal and not okay. You can find moments of normalcy and you can find moments of joy no matter what you're facing. And you just can't let the darkness consume you because you got to be strong for your kid or for the person you're taking care of.
And if they see you giving up, if they see you losing hope, then I think they lose hope too. So, it's not that I am planning to lie or hide things, it's just that knowing when's the right time and knowing how to refocus.
Peggy Burkhard:
Wow. I think that was a gift for your family to do that, what you did, and I commend you for that. Well, Rachael, I can't thank you enough for being with us today and sharing your family's story. We will stay in touch of course and all the best.
Rachael Sommer:
Thank you. Thanks to the National Bone Marrow Transplant Link for having me and for everyone that you've helped, and I hope that this is helpful. If anybody wants to reach out, feel free to share my contact info and hope that it can be helpful to others.
Peggy Burkhard:
Well, thank you for that.