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
Welp. A week later, and here we are back in Rochester. Tenleys nausea and vomiting have continued to worsen. To the point where it’s waking her up in the middle of the night, she can’t keep any meds down, and she has no energy probably due to no nutrition/hydration. The steroids last week were just a temporary fix. At 1.5 months after her last chemotherapy treatment, things should be turning around. Earlier this week her oncology team moved scans up to March 2nd & 3rd due to Tenleys condition. But after talking to them today and Tenleys vomiting worsening they decided we should come in today. So we got to Rochester a little before 8pm.
Tomorrow we meet with nutrition, and GI again. As well as MRIs of both brain and spine. I know I keep things pretty positive on here, but at this point it’s hard to stay positive. This is not easy on either of us. She should be feeling better, and isn’t. We need answers and are hoping to get them after this visit. They think we will be here til at least Saturday, but let’s hope for some news! At this point just to know what’s causing all of this would help a ton!
Side note: As I am finally wrapping up Thank yous from the benefit, I am looking at the daunting task of graduation thank yous. During the first month of treatment everyday we wrote thank yous for graduation cards. At this point, we’ve pretty much seen everyone since then and it semes more stressful (as it was almost 10 months ago) to try and fill out the rest and get them all sent out. We know most of you keep up with Tenleys journey on here. We can’t even begin to express our gratitude toward everyone that sent well wishes to Tenley and to everyone that has continued to support her. As you know she’s taken and will continue to take this year to go through treatment and recover, and hopefully this fall will start at CVTC for criminal justice and eventually the police academy. Thank you!
Well when they said we wouldn’t have to come back for 2 months they actually meant 15 days! Tenley had an appointment with her Neurologist to see if anything neurologically changed, but everything looked good. Also got her port accessed and flushed as it has to get done monthly. Takes longer to drive there and back than the time we spent at the actual hospital. But, her oncologist wanted the assessment done! Hopefully we won’t be back until March 31st for scans!
The past 15 days Ten has had some trouble with nausea and vomiting. The weekend of the 7/8/9 was terrible with constant nausea and vomiting. They gave us an “action plan” to follow if this happened and the steroids helped and got her over the nausea and vomiting. She’s eating more now, and the nausea is minimal. Hopefully only upward from here.
I made Tenley a shadow box for all the beads she collected through beads of courage. The box reads “.. and little by little, she finds the courage for it all.” Pediatric oncology/hematology gave Tenley the option to participate in beads of courage. “Each bead tells a story of courage, honor, and hope. The beads of courage program provides innovative, arts in medicine programs to help families record, tell and own their stories of courage.” More information can be found at www.beadsofcourage.org.
Normally the beads are displayed on a string. I chose this to really show her journey with cancer. It’s something she can display for the rest of her life without being to “cancer”.