The check up today went good! We were “screened” when we got to the hospital, asked if we had a fever, shortness of breath, or cough in the past 48 hours. All of the waiting rooms had signs on the chairs every couple of feet, saying they’d like people to be spaced out due to the Corona virus. There were still quite a few people there though!
Ten has been feeling very good! Little to NO nausea meds during the day. Eating a good amount of food, at least one meal and a couple snacks a day! Yay!
I should add, in the past when she’s been “eating” I have had to push her, make her food, make sure she’s eating, or doing 3 meal replacement shakes a day. I haven’t had to do that at all this time!
The nutritionist we met with was happy with what Ten was eating, gave us a few more high calorie options we haven’t tried before! We will start easing into the goal of 1800 calories a day.Her oncology team was more than happy with how she is doing, but the big question now is “why?”, why all of the sudden is she feeling good? Not nauseous? And even hungry? We don’t know, but we will take it! We are going to try Marinol again, which is a hunger stimulant derived from THC. She has been on this before, and it did make her hungry but it also made her dizzy. Enough to make her want to stop taking it. However we are going to try it again with a smaller dose. Hopefully this mixed with less meds, and no chemo this will help! She took it tonight and ate a sleeve of Girl Scout cookies, some potato olays, and some pizza fries. So I’d say it’s working!
If everything stays this way, we won’t have to go back for a month! We really hope it works out this time. But I feel like I’m just waiting for it to go back to how it was. Which sucks, but is a very real possibility. It also sucks that Tenley is finally feeling good enough to go out, enjoy things but we have to practice social distancing. Her numbers are better but she’s still at risk.
In the mean time Tenley will be working on building her strength back up with at home physical therapy. Maybe going back to work. I’ll be working and taking my classes online. And we will continue fighting with insurance to get things covered, get things back dated, etc.
Here’s to eating, and hopefully a month inbetween hospital visits 🤞🏻
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Sorry for the late post! I’ve been catching up on numerous things and forget to update! We actually didn’t have to go to Rochester today. Tens oncology nurse called and asked how this weekend went after the feeding tube came out. And it went great, Ten actually ate and was even feeling a little hungry! (Finally!)
We had previously scheduled appointments for a check up on the feeding tube for Thursday. So they told us we can hold off until then! Yay!
We meet with nutrition, blood work and oncology team Thursday. Will update then, hopefully earlier then I have been lately!
When does it end? Sorry I didn’t post yesterday. Tenley got home at 2:30ish yesterday. She’s been miserable. The feeding tube was supposed to run 24/7 either attached to the IV pole or in a backpack. As you can see in the first picture it did not go good. It was extremely uncomfortable on top of already being nauseos and vomiting even though there was nothing in her stomach. She didn’t sleep all night she was so uncomfortable. Ten said it’s the worst thing she’s had to deal with through this whole process, which says a lot. Especially considering how much she’s been through.
After talking with her team today, and Tenley telling them it’s the worst thing she’s been through we decided to take it out. We did discuss multiple options, like keeping it in but not do feedings, different medications, etc. Ultimately taking it out was the best decision, so we did. We’ve got some more meds on board, hopefully we get through the weekend okay and we are back to Rochester on Monday. Ten feels a lot better with it out, still some nausea but she’s been drinking some with no vomiting. (Second picture, much happier)
At this point I’m feeling defeated. We just spent the past 4 days in the hospital for something that didn’t work. We go back Monday for probably another hospital stay and IV nutrition. It’s hard to see where we go from here, what’s next....
I’ll update Monday.
Also we were washing her sheets! 😂
Nothing to big today and not going home. 😔 In order to go home her feedings have to be at 75ml and right now she’s at 45ml/hr. They up it 10ml every 12 hours, but have just increased that. Should be going home tomorrow afternoon and she is tolerating it well!
We also talked with the psychiatrist and she suggested that her nerves could have become conditioned to the n/v and her body just wants to keep doing that subconsciously. We don’t think this, and her oncology team isn’t fully onboard. But they gave Ten the option to try biofeedback therapy. It won’t hurt, and it’s another thing eliminated from what could be causing the n/v. So she’s gonna try it!
Her oncology team apologized for how the day went yesterday. Which was greatly appreciated. They also took away several of Tens meds including the steroid she was just prescribed. Hoping the increased nutrition helps!
I went home tonight because I have to work tomorrow, and Tens boyfriend (Huntyr) is staying with her. But Tenley will be getting all the supplies around 9am tomorrow and should be headed home shortly after that.
WHAT A DAY. And not a good one at that, things have been ROUGH today. Last night we were told Tenleys tube advamcement would be done at 10:45am (putting it past her stomach into her intestines while watching scans).
At 8am they woke us up and said they need to put the NG tube into her stomach because they could get the advancement done sooner. So they placed the tube which was an awful experience for Ten full of gagging and vomiting. She does not like the feeding tube, as it’s uncomfortable. Hopefully this will get better with time. We then have a GI consult filled with all of the questions we’ve had before and even last week. They decided they needed an ultrasound of gallbladder and something else. Then comes nutrition consult, they just heard of Tenley and need to order the supplies STILL.
At 11 they finally take Tenley down for what we thought was the advancement, but no just X-ray and ultrasound of something. Then we meet with oncology team they just say they need to get the advancement done. Then comes psychiatry consult, because someone unbeknown to us thinks the N/V is from anxiety. Pretty much ruled that out, but might change some meds.
2pm she’s finally, FINALLY down for the advancement. And I’ve had some words with the head oncologist, who understands my frustrations. As this was not a planned admission and things should not be taking this long.
4pm she gets taken down for ultrasound AGAIN because they didn’t get everything the first time.
5pm first feeding FINALLY starts.
We will get sent home with the formula, pump and other feeding supplies. However we have yet to talk to them or learn anything about feedings.Who knows what time that will happen tomorrow. Hopefully we get out tomorrow, at this rate seems like we will be here forever.
We are both frustrated after a very long day. Our understating was that this stay was for the NG tube to get placed and go home with it. It should not be taking this long. Hopefully tomorrow is a better day. Also if you see the picture, hopefully we are able to tape it to a more comfortable position, there is no way she can have it like that day to day.
You guessed it we are back. At this point it feels like the side effects are never going to end. We got out a week ago Sunday, and Monday-Wednesday went great for Tenley. She was eating really good and had a lot of energy. Wednesday that started to taper off, Friday was back to no eating, and Saturday back to throwing up again. We knew leaving Sunday that if she didn’t keep her calories and weight up it would end up with an NG tube, and that’s where we are going.
Tenley will be getting an NG tube tomorrow. It will go past her stomach so she doesn’t have to deal with throwing up the contents she gets through the tube. Last time she got it it only went to her stomach causing her to throw it up. We don’t have all the details. But she does have to have a scan to make sure the tube is placed in the right spot. She’s not excited to get it done, but is excited to have the pressure off of her to eat. Even last week she still wasn’t hungry, just knew that if she didn’t eat a tube would be placed.
So what does this mean? It’s hard to tell Tenleys symptoms and the severity of them when her nutrition is down so much. They think the reason she did so good the beginning of last week was due to the IV nutrition, but it just wasn’t long enough. Hopefully after a few weeks with the tube her strength will be up, and maybe the nausea/vomiting will be gone 🤷🏼♀️ we don’t know but it’s one step closer to the anwswer and she doesn’t have to feel so crappy ALL the time.
Hopefully this is only a one night stay for us. She has to get the tube, the supplies, and tolerate a feeding for us to go home. Really hope things work out because we both absolutely hate staying here at this point. I’ll update tomorrow!
GOING HOME, TODAY!! The hospital oncology rotation switched last night and this team was more than happy with how much Tenley is eating! They also feel comfortable with our previous nutrition visits and we know what to do! Should be discharged by 5pm!
Not sure what the next step is since they did scans this week. But I’ll let you know when I know!
SHE’S EATING!! After not eating for over a week, she’s finally eating and more than once a day! I say over a week but it’s really been over 2 weeks, and that was only temporarily because of the steroids. So it’s been a very long time since she’s eaten. Last night after I posted she had a peanut butter and jelly sandwich with milk. And today’s she’s had even more than that! This is huge, I cried the first time she ate.... Things finally, FINALLY seem to be looking up.
Today they still have her on TPN, but she will probably get off of it tomorrow. Or whenever they think her calorie count is high enough. No vomiting today and only a little bit of nausea tonight! Nausea meds are WAY down today so that a good sign! We both hope to go home soon. But I know there going to make us meet with nutrition and other services that aren’t here on the weekends. So hoping for discharge Monday! 3 nights down and we are definitely ready to go home ASAP.
Forgot to mention: we have some hair coming back! 🥰
No big changes today. They have already upped her steroid dose, just because she was able to keep the first dose down. She only threw up once this morning, and things seem to be getting better. She even ate a little ice cream and kept that down 🙌🏻
We met with nutrition. They suggested TPN (IV nutrients) because she hasn’t eaten any thing substantial in at least a week and has lost a lot of weight. We also discussed an NG tube again, decided it wasn’t good right now because anything that touches her stomach comes up. But, if she’s still not hungry after the N/V gets better she might have to.
Sounds like we will at least be here over the weekend. Neither of us want to, we really hoped we wouldn’t ever have to stay another night in the hospital. But we obviously don’t want to leave until things are better!
Good news and bad news. Good news is, is that the scans showed the spot hasn’t gotten any bigger and if anything has gotten smaller! Yay! However, this means we still don’t know what is causing the nausea/vomiting. So we are kind of back where we’ve been since the beginning, trying to figure out what is causing it. We talked with GI, and they suggested a steroid to settle the nausea/vomiting. I was NOT on board for a steroid,again. Since the beginning it’s been a constant cycle of nausea/vomiting, then on steroids, then tapered off and repeat. I feel the steroids just put off the N/V until she’s taken off them again.
However, the doctors assured me this is a different kind of steroid. It just gets absorbed through the stomach and the overall goal for it is to stop the N/V. It also doesn’t come with the long term side effects they were worried about with the previous steroids. She started it tonight, and they assume it’s gonna take a couple days to kick in. Good thing about this, is if it works we know it’s problems with digestion/stomach, and if it doesn’t work we know it’s not that. Will keep updating as hopefully things change for the better! 🤍🧠
She is feeling okay. Mostly sleeping during the day, only threw up twice today, I think? Her primary oncology team has been amazing. Although they aren’t on rotation at the hospital, they've called and messaged both us and the doctors on rotation. We are very thankful for them!
Side note: N/V = Nausea/Vomiting
For the past month and a half Ten has been having bad headaches when any pressure is applied i.e laughing, coughing, sneezing, she gets bad headaches, to the point where they would immobilize her. The past couple of weeks things have gotten worse, vomiting, dizziness, sweating, loss of balance. After numerous E.R. visits and appointments she was treated with migraines. Today she went in, they finally gave her a CAT scan and found a mass on the back left side of her brain. Soon after they flew her to Rochester. An MRI showed a sizable tumor on the left side, and unknown amount on the right side. They are concerned with the pressure being put on the cerebellum. It looks like she will be having surgery tomorrow. No food or fluids after midnight. She is able to communicate you can contact her through her phone, please no phone calls. Please keep her in your thoughts and prayers. I will be updating every chance I can.
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