Do I look totally disheveled? Ugh. Make way for the diseased girl. [Peter] Here’s our room tour, and that’s it. ♬ Don’t you think we’re better together ♬ ♬ Oh Honey ♬ ♬ I think we are ♬ [both] Good morning! We’re on our way to the hospital. We had what you you might call a rough night. Which isn’t directly related to us going the hospital. No. It’s not related. Is it related at all? No. I don’t know why I said directly. I was like, oh no, is that why you couldn’t sleep? I coudn’t sleep last night. I don’t know if I was too hot. Well the weather is warmer, so I’m guessing that’s what it was, but… Anyways. I don’t…yeah. Now you can tell them why we actually are going to the hospital. Oh, we are going to the hospital to have more extensive bloodwork done. My doctor wanted me to come instead of just going to the local place to get blood work. He wanted me to come to the hospital after my bloodwork results from Monday were not good. So, that is what we are doing. I think how it’s gonna go is we’re gonna get blood work and then stick around like… Maybe we’ll go to Clover. Yeah, get some lunch. And then when the results are back he’ll call and let us know if we’re good to go, or if we’ve got to come in. And we will see you guys along the way. Sounds like a plan, Dan. Who’s Dan? You like Mary’s sweatshirt? Whoop whoop! You guys have been ordering your bundles. That’s why we’re at the post office at this very moment. We just dropped off a bunch of water bottle backpack bundles. Water bottle backpack bundles and shirts, and sweatshirts. And Peter added hoodies, right? Yeah, there’s hoodies now too. So. I just thought of how I feel and I want to see if Peter feels the same. You know like when there’s a youth group all-nighter, and then the next day you leave. Wait, did you not sleep well? No. My feeding tube was beeping and… Maybe that contributed to me… Could be. I don’t know. I just, like… it was one of those where I just like wanted, my body wanted to sleep, but I couldn’t sleep. Yeah. It was how we used to call it when we were little, I’m tired, but I can’t go to sleep! [both] Mommy and daddy! Can I have a drink of water? That’s what my sister and I used to say. Do I look totally disheveled? [Peter] Hon, you always look put together. Oh, I thought you were gonna say- [Peter] Haha! No. I just, when I got out of the car to go to the bathroom and like when I was walking through the lobby I was just coughing a ton and I was like… Ugh. Make way for the diseased girl. So basically we came up to my normal floor so that they could call down and make sure they were ready for a CF patient at the blood lab. So that’s what we’re doing now. [Peter] Yep. They made sure, and now we’re headed to get some blood work. Right, bonesy? [Peter] Is that right? [Mary talking as Ollie] Huh? [Peter] Okay, we made it. They had a room ready for us and… I feel like this is how big our room is. [Peter] Yeah, it does feel like that. Here’s our room tour. [Peter] And that’s it. I can…I can… read the comments already. [Peter] Okay. Why are you in a Children’s Hospital? [Peter] Ah, the frequent question. So now you tell them. [Peter] Well… Both the children’s and adult’s CF centers meet at Children’s Hospital, even though they’re separate… clinics, we both use this facility and so [Peter] that’s why we’re at the Children’s Hospital. And it works out because they are very well educated with infection control protocols and that sort of thing like, why I don’t wait in the waiting room and that sort of thing, so it’s helpful that all my care is at one hospital. [Peter] Yeah. That’s… [Peter] It does does make it nice, and I think, well, CF is like uh… It’s uh… I mean, somewhat of a small disease and so like to combine the clinics in a single center I feel like helps give them more of education throughout the hospital. Wouldn’t you say? Because they’ve got a higher patient population so they like, it’s not just once in a while that they hear oh, a CF patient’s coming to the floor, or like to the lab or whatever. They know exactly what that means, and so it’s just wonderful I’ve been at other hospitals where they do like a blue card or something where you show when you log in to the X-ray place or the blood place, and you show them your blue card and that is supposed to indicate like I’m a precautions patient but [Peter] Wasn’t that here that we had the blue card? I think it was here and the other connected hospital. [Peter] Oh yeah. But then they just switched from that to… They just know in the system when you login or like when you tell them your name, they’re like, oh, she’s a precautions patient and takes me right back to the room. And basically by precautions like throughout the hospital whether it’s x-ray or blood work or wherever they know not to have Mary wait in the waiting room. And that’s to prevent me from spreading the bacteria from me to other CF patients and from other… Other illnesses spreading to me. [Peter] Yep. [Peter] So. So yeah, both ways. [Peter] Yep. [Peter] So we’re thankful for the system. [Peter] No system’s perfect, but… Yeah. [both] Thoroughness is what makes the system work. [Peter] That’s what we tell ourselves when we’re frustrated with it. [Peter] We just had a bit of a freakout moment because we thought Mary didn’t have any zofran on her and she was getting pretty nauseous [Peter] But this little map bag she carries around that her mom made her, [Peter] it saved the day cuz there were two zofran in there. I knew I had just taken the last zofran the other day… and I know I didn’t put any more in there, but these two were still there. [both sigh] [Peter] Zofran to the rescue. Come to me. [Peter] Come to me, anti-nausea. We came to Sonic. [Peter] Sonic! What does this bring back memories of? The first six months of our marriage. [Peter] Yeah, we would late night be like… [Peter] Let’s go to Sonic! We’d also go in the middle of the afternoons. [Peter] Oh, yes, like in between- Class. [Peter] In between classes, I think. I’d come home, and we’d be like, let’s go to Sonic. [Peter] Because, yes, because they had happy hour from like 2:00 to 4:00, It was fun. And um, so we don’t have a Sonic near us and we ran a couple of errands, we stopped at IKEA and got some a couple of like…well, Mary got a bunch of plants. You should give them a plant haul when we get home. But we’re worn out as you can imagine. We didn’t do like the full IKEA thing, we just walked around a little bit and got some plants and a stool and… [Mary] Made a stool? Made a stool? [Mary laughing] You made a stool in IKEA? Good job. [Mary laughing] And now we’re gonna figure out what we want here. [Mary] I also was able to stop by and see one of my friends who had a death in the family recently, which was just sad and… Yeah. So it was good to be able to see her. We also found out that my platelets are up slightly. Maybe a little more than slightly. They’re, they’re coming up, they’re going in the right direction, so that is really good news. Yeah, so basically, I realized we didn’t like update them since bloodwork, so… We stuck around by the hospital for a couple of hours. We went up the street to a little restaurant and I edited the vlog and we waited for those blood results. We were like checking the online blood results. And once we saw that they were up a little bit and stable, then I ran and got the car, because if they hadn’t come up, we would meet with her doctor before we did anything else. So. I think that he’ll probably be calling me tomorrow to talk about what the hematologists thought and just in general to like talk about plan of action and that sort of thing, so. But for now we are headed in the right direction, which means we can be heading home. Yes. And… Yeah. So I think Mary used to get a grape slushie here. What did you get? You got a cherry…oh wait, hold on. Limeade, cherry limeade. Strawberry. Oh, that’s what I would get. A real strawberry slush. A real strawberry slush? I think that’s what I used to get. Yeah, those are good. Real fruit- yeah, real strawberry slush. Yeah. So they have…all right, we’re gonna figure this out. My head is so not wanting to play nice. How’s your head? It’s playing nice. I’m glad [Peter] How’s your head, buddy? How’s your head? [Peter] I think he’s ready for a little nap. Me too. Cheers. I got the blue coconut cream slush, which we couldn’t find on the menu which was really confusing, but then I was like, do you have the… now, I thought I used to get it layered, right? Life is so hard. Life is so hard! I couldn’t find the cream slush on the menu! Where’s the cream slush?! But I thought I used to get it layered. Ice cream, slushy, ice cream, slushy. But they mixed it, they mixed it all together, and it’s delicious I’m so glad. Mmm. But who decided blue and coconut went together? I don’t know, but it’s a really good idea cuz it’s so fresh looking. Mmm. Mary got a strawberry real fruit slush. Real fruit! [Peter chuckles] Basically a smoothie. A sugar slushie with some pieces of fruit in it. It’s like some strawberry jelly or something. All right. We’re gonna get on the road. At one point there was some real fruit involved. At one point, somewhere along the journey from the strawberry fields to the Sonic delivery. No rollerskates though. This lighting is pretty cool. Cool lighting. Look at that. It’s like sunroof drive-through lighting. How is it possibly only 7:49 pm? [sigh] Today was crazy. Yeah. We had a… There was an issue with the order so we ended up sitting in that room for a long long time, the blood taking room. Did you guys see that? My straw attacked me. Yeah, we sat there for a while. Okay, we’ll see you later. Alright, peace out girl scout. I’m sitting here trying not to cough and I just had a really hard coughing fit. Then I realized my head feels like it’s gonna explode. And then I realized, why have I not taken meds for the last six hours that my head’s been hurting? So then I took meds, so now I’m waiting for them to kick in. Until then… Breathe shallow. Try not to cough. Hey guys, we’re home. This little missy is not feeling good. Her head’s feeling pretty bad. So we’re just gonna lay it low for the rest of the evening. It’s pretty early, it’s only nine. [Mary] It’s only nine? Yeah. Oh my goodness. [Peter] You thought it was bedtime, didn’t you? Yeah. Well, it can be bedtime. Mary’ll be feeling better here pretty soon, but thanks for coming to the hospital with us today. And we’ll keep you updated as we hear more about her blood and what’s been going on with that but for now we’ll take it that it’s stable. [both] And, as always, we will see you tomorrow. Good night! [Peter] Actually it has gotten worse. [Peter] Mary took some more pain meds and… [Peter] We’ve just been resting, but the headache has gotten worse so… [Peter] We’re hoping that the pain meds help soon and… [Peter] and that we’re able to sleep tonight. [coughing] [Peter] Good news. The moment of truth. Is there gonna be lightning? Nope! I think I’m starting to feel a little bit better. [Peter] That is good when you’re able to cough and… Oh my gosh. Oh. Normally when I cough, like after I cough, on the top of my head, it’s like… Oh, it just hurts so bad. I don’t know how to describe that. It’s like wah wah wah…after, but… My eyes are open. I’ve got my glasses on. That means I’m feeling better. Thumbs up. ♬ And I’ll take you guys to say good night to the one and only Ollie boy. And if you want to get an Ollie boy water bottle they’re available on our online store. Say good night to the people. ♬♬

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  1. Wowzy! That was a super long day! But we did it, and we are moving on! How was YOUR day? Let me know if you’re in a rainy area- it’s super rainy here, so we are thankful for a dry, warm home! Sending you guys a high five, whatever you’re up to today!

  2. I have a long day tomorrow to get blood work done. I am rather overwhelmed because they decided to book all my medical appointments the first week of March. I had to cancel my Mammogram and my MRI. My doctor insisted I get blood work done before seeing her this upcoming week. I am just trying to wrap my head around it all. That MRI will happen soon or I will go postal on someone. I can't do it without the meds though. AND I just ranted. I apologize. LOL

  3. Grateful your blood results are looking better. Oliver looks so regal sitting up in the backseat. But then again he does have a chauffeur! LOL Dogs are such a gift from God.

  4. Hi Mary, hope you are feeling better already. P.S, I noticed that every time I drink a slushie I cough a lot everytime. I don't know why but it happens everytime. I know it is not the reason you cough but it might not help. Hope it helps.

  5. I'm pretty sure I understand your "whaa whaa whaa" pain… I get horrible migraines and I have chronic bronchitis so when I have them both together it is horrible. Unfortunately I cannot take oral meds so thr only thing to do is go in for IV ones which I try to avoid at all costs… hope you are feeling better!!

  6. Mary have u tried blowing on the sensors in the pump and doing a 5 second fill set. This normally stops and occlusion it happens us once a day but the himself is on bolus feeds not continuous

  7. I love to watch your videos while I lift weights. It helps me stay strong enough to lift my 11 year old special needs girl when she has a seizure and needs to be carried to the floor in a spasm safely. my arms are sore now but a good sore. I am sorry about your head. Head aches are the worst! my friend just got the special ear piercing with a holo needle not a gun, at a tattoo parlor to stop migraines permanently and it worked for her! it is a huge hit in our town. hope your head is better by now though

  8. today I played board games with my girl and hide and go seek followed by her doing some computer time while I exercised. today is her last day of antibiotics for a bladder infection and she is thrilled as the meds make her almost throw up every time.

  9. Mary and Peter is the nor-easter affecting you yet.
    Mary I am so glad to hear your platelets are improving.

  10. Sonic reminds me of college. I would go there for their 99cent hotdogs. (Poor student life) But I also remember growing up the two thing my mom and i always had to get at sonic was a blue coconut slushy and a diet cherry limeade

  11. What would you do to avoid sitting in a waiting room if you were out of town and had to go to the hospital?

  12. I am a CF patient and I find it very hard to cope with it, I also have to quit school soon because of the germs I am so sad about it. I love you guys so much and I love your sweatshirt.

  13. Mary sorry your not feeling good. I have not been felling good for 3 days now with my right hip hurting and not being able to walking good or being able to sleep at night. One thing we do have in common is that God is on our side and he is there to help us get through the bad days.
    Lord help us and those around with problems get through the rough days.
    Sarah Bender NM

  14. Does peter get paod as your caretaker? I know many ppl with terminal disease have caretakers n they get paid through the state?

  15. Hey guys, I have been watching for a few months. After much consideration, I have decided to get a Poodle for a Service Dog. She will arrive on 3/8/18. Seeing how Ollie braces and helps with walking, I see this would be a great addition to my life. Additionally, I will train her to fetch the phone if I fall. I have heard the perspective of being a responsible service dog handler. Thanks for those tips. I will carry the cards that help explain the laws with the references to the DOJ. Thank you so much for all your encouragement. Chronic Illness is real and we need to have a very healthy proactive approach to our health. May you endeavors be blessed 🙏🏼,

  16. I hate when I can't sleep!!
    My mind has racing thoughts. I can be fine all day, no problems, and I go to bed… And WHAM!! my mind starts thinking of all these crazy thoughts!! My husband gets a song in his head, and it keeps him awake!! Great Vlog today!! 😄

  17. I'm assuming the children's hospital you go to is Boston Children's, in which case, I don't blame you….that hospital is amazing. Also, I have had a cough lately, and when I'm like uggg, I hate this, I think of you and how you cough every day and it makes me realize how lucky I am. Hope you feel better soon!

  18. I just want to say that your vlogs have inspired me so much that now i am pursuing my way to study biochemistry with genetics at university. It is so interesting (for me) how genes and DNA works and how unfortunately people have genetic diseases such as cystic fibrosis and I really want to help with the CG truth we have here in the UK. I also want to say it is so heartwarming how optimistic and positive you both are, dealing with a disease that is not easy! Restores my faith in humanity after what's happened in the world recently.

  19. I'm so happy to hear that your platelets are up yay!!! It feels like there's a jackhammer in your head that's the best way I can describe it.

  20. I hate migraine headaches some times they will last for days… So I just lay in bed no lights allowed and play VERY quietly soft praise and worship music… Psalm 34, I WILL bless the LORD at ALL times…. So that means even with a migraine headache… I've learned over the years that I can lay there and be miserable and wine about it and end up feeling worse and everyone around me is miserable from listening to me wine. OR I can lay there and start worshiping GOD in spite of the headache and soon my spirit is lifted and I find myself counting all my blessings that God has blessed me with to the point of being grateful to have a head even if it huts…
    I learned years ago what it means to bless the LORD/give praise to the LORD at all time back in the late 80's when my aunt the woman I loved like a mother was dying from cancer. She had a unmovable growth on her neck the size of a watermelon. They had it wrapped up to her neck and head with straps so she could move around but most of the time she would be lying on the sofa with pillows holding the growth up. But she laid there and never grumbled about it she was always reading her bible and listening to praise and worship music. She was so in love with Jesus and she would tell us how blessed she was that soon she would be right there at the feet of her personal LORD of lords and KING of king. The very one that she has longed to be with forever from childhood. She was in bad pain and I couldn't understand that if God was a loving God then why would He let her suffer so much. She told me not to fret over what she was going through we live in a sinful fallen world and in this world there is sickness and pain. So because we live in this world bad things happen even to good people that are in love with Jesus. But she said that yes there was pain and she suffered a wee bit with it but she was able to be at home for the short time she had left here on earth to look out and see her beautiful flower garden. She could listen to the birds sign praises to Jesus and watch to little animals out in the back yard. She said how cute it was see the raccoons sneak up to steel the cats food. She said that most people that are in her condition are stuck in a hospital or nursing home just waiting to die. BUT God had blessed her to where she could be at home and enjoy every day that she had left here on earth.
    It wasn't long after that, a few weeks latter she went to sleep here on earth and woke up in heaven to worship at the feet of Jesus. I cried for days after she left this world but then I remembered her words that she was worshiping at the feet of Jesus the one thing she look so much forward to do. The I realized that I was crying for myself I had a empty void in my heart. Only Jesus could fill that void so I started praising Jesus for the 35 years I had her love freely given to me. And if a person could show that much love how much greater love does Jesus have for me. Jesus show how much HE loves each and every one that HE would go to the cross and hang there and die for my sins that I could live free on day forever with HIM and my aunt forever….
    I'm sorry for being long winded I just hope and pray that this may help someone who's suffering physically, mentally, or spiritually… Be blessed… BBE..

  21. Glad you were feeling a little better by the end of the night Mary. I wanted to share with you guys how you helped me today. My latest ultrasound showed signs of liver damage and that my spleen is enlarged. I don't have CF but I am battling other chronic illnesses and this news was unexpected as the ultrasound was actually to check on my stomach. :s Anyway, while I am waiting with a lot of nervousness as to what this might mean for me (more imaging/test to come)…. I was able to take solace in the fact that I 'know' someone else who has those two issues and that she is so awesome and joyful. I know that I will be alright too, and I will keep doing what I think I can't do. Thank you both for always giving us hope and companionship through these vlogs. I hope you know how much you mean to all of us out here in internet land.

  22. Hi Peter and Mary, sorry your day was so long.
    But it was a good news day on your Platelets.
    And hello Ollie boy.
    Where I live in Western Washington, we get more rain than sunshine.
    And, it is Rainy season here. As with your part of the world you get some snow and harsh weather. But we get rain and wind. But this year in forever we did get a few days off and on of a little light snow. Well thanks for taking us all along with you today and like you two always say, Good night and we will see you tomorrow.
    Peace and love to you both.

  23. Hope you feel better! Oliver makes me laugh how he just sits in the back looking out the window and ignores everything going on 😂

  24. My body immediately went back to my senior year of high school when you mentioned the feeling of the day after a youth group all nighter/ lock in (what we called it).
    Have you ever needed to go to an ER/ other hospital that didn’t have a precautions procedure in place like when you were in Scotland?

  25. Does Ollie do alot of alerting to your blood sugar or his he more for stability for you? I am going to meet a dog tomorrow that is trained as a mobility service dog. I have mobility and stability issues as well as anxiety so I hope all falls into place for me to find a service dog.

  26. Mary, I just want to say that I am so inspired by your Vlogs because you are always smiling even when you are feeling terrible. God is using this horrible disease to inspire people all over the world. you are amazing. keep swimming. you got this.

  27. Migraine sufferer + other Chronic illnesses. I know the pain Mary. I looked at you one of the last clips in bed and just knew. Right there with ya. Some times it’s nice to know you’re really not alone in all the pain. 🤕 ya know?

  28. I saw you guys in the hospatial yesterday. I didn't go up to say for to reasons 1 it's because you guys were heading out and in was going to blood draw and 2 if I said hi then oliver would sniff me. And I dont lile dogs sniffing me no offense. And I'm not sure if oliver would sniff me. Anyways love you guys so much and have a awesome night or whenever you reading this comment😘😜

  29. I was rolling laughing at Peter's facial expression when his 'straw attacked him' that I actually watched that moment about 5 times. #dontforgettolaugheveryday

  30. I’m almost 30 and went to a pediatrician in a children’s hospital. I’m part of Yale’s Pediatric Genomics Discovery Program.

  31. Mary, have you ever watched Claire Winelands video? It spoke to me on such a deep level, not sad persay but I definitely got feels. I would love to know what this video makes you think, sad, angry, enlightened, understanding? For me it was a trip and an experience. Maybe you won't even like it 😛 I still wanna know~

  32. Where do you find your blankets Mary? They are super cute and look like they are super comfy and would be easy to take on hospital trips with us!

  33. I’ve been dealing with chronic pain for 30 years, but I have to tell you…when I get a migraine, it’s the worst, it kind of scares me. Feel better please.

  34. its hot and dry here, summer, no, actually, autumn now, but still hot. a weird combination you should definitely try when its warmer there is ice cream- a scoop of lemon sorbet and a scoop of a really rich chocolate ice cream.

  35. I have those same leggings .. when my head pounds like that the only thing that helps me is Excedrin for migraine ..I have bad headaches all the time.. pray that you feel better

  36. 'Life is sooo hard! I always say no one ever told us life would be easy…lol. Too many decisions and rules.

  37. I am living in the north of Bavaria. It has been very very cold the past days, maybe a week, but now it's starting to warm up. This morning i had to shovel snow off the sidewalk and now(lunchtime) it's all gone, melted, and the temperature rises up so fast. I had a terrible night either, I am sure because of the weatherchanges yet to come! But I am going to take a rest after watching your new video! Have a nice weekend! love from Bavaria/Germany! Britta

  38. Mary, since you & Peter eat out so much, are you ever concerned about germs from the people who prepare the food?

  39. It's because in the past, most CF patients didn't make it to adulthood so the treatment centers all ended up at children's hospitals.

  40. Hello the Frey family I just subscribed to your channel great videos Mary I apologize for all that you've been through in your life even though I knew absolutely nothing about you yet I am yet to start a new project is to watch almost all your videos so I can get to know little bit about you

  41. We got the snow part of Riley here in Albany, NY. All day yesterday. We lost power for half an hour and had a couple surges. Praying for The Freys.

  42. Whenever I am having Flairs of my Chronic illness's I watch your videos and feel so much less alone in the world!

  43. You two are amazing! A best friend of mine has CF so I know everything about it. I wish I could be more helpful for my friend, now he's under oxygen therapy almost all the day long but he's so strong calm and gentle. I wish you all the best.
    Greetings from Sicily.

  44. Young cancer patient here. Can’t leave the house without my zofran!!!! Even though I hardly need it. There was ONE TIME I did……..never going without again.

  45. I wish I could take Zofran but it gives me such a headache, ironically. I can’t remember the last time I had Sonic.

  46. It’s funny when Mary said she could see the comments now….tbh my first question was going to be why are you in a closet room?? Lol

  47. I absolutely adore you guys. You both give me so much hope. I’m always sending an abundance of strength, joy, healthy vibes and love your way.
    A little side note, I have an Oliver too! He’s such a sweetheart. Although he’s a different breed, (Boxer), than your Oliver he reminds me a lot of your Oliver. 🐶🐾♥️

  48. When you think someone is almost perfect and then you find out he talks with food in his mouth!! 😱

  49. My cousin Katie has CF & also goes to Children's Hospital (she's 34). Children's has changed their policy several times over the last few years. They forced her to go to another hospital, which she hated. There was a huge issue with the insurance too. After fighting tooth & nail & being her own advocate, Children's has taken her back. Phew! Thanks for the videos. Keep up the good work. Let's all continue to raise CF awareness.

  50. What do they have to do, special, to have a room ready for you? …besides the normal cleaning that's done to hospital and clinic rooms?

  51. Many people do not understand what a "precaution patient" is ir means. They just assume someone's getting special treatment without understanding there is a need why they are not left in the waiting room with all the other patients. Nor do some understand that's the wait can be or is just as long in a room where we are separated from everyone else as those in a waiting area depending on emergencies room status.

  52. Sorry if you have mentioned this before, I was wondering if the headaches are caused by her C.F. or if they are caused by some of her meds or if she is just one of those people (like me) that has migraines and headaches all the time? I understand that coughing all the time definitely doesn't help them but I wasn't sure if C.F. causes them. I just found your channel and binge watched most of your videos. I have a young cousin that has c.f. and we had already lost a sister of hers to it before she was born. Just trying to understand it more.

  53. I prefer the answer to why you're in a children's hospital is that you're like Ross from Friend's who carried on seeing his pediatrician long after he was meant to! You just want candy or stickers,really,don't you Mary? lol

  54. What do you two say about the health system & it's struggles at times?? "A thorough (?) makes the system work." It's so catchy, and I really like it.

  55. The sign behind yall in the hospital says dialysis! Srry that excited me cuz i have kidney failure and am a dialysis patient! Its the little things i guess lol. Love u guys and yall are an inspiration to me to keep going and fighting my type 1 diabetes kidney failure diabrtic retinopathy and heart problems. God bless u guys!!

  56. Love watching your positivity and faith. My cerebral palsy, and esophagus problems give me hard days but you help me every day. Also just got a few things to remind me to be grateful from the your shop. Have a wonderful day

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