Journal

Journal entry by Mayzie Walker

Tens surgery went great! Despite having to get up at 4:30am today, we are home and she is resting! Still pretty tired from the anesthesia. But the port is out, the last “thing” from cancer is gone! Yay! 

Crazy she got it in May 28, 2019 and taken out today. One year and one day and she’s done with it! Now we just have to wait 10 days for healing and we are FREE for the summer.

I guess I won’t have to update about anything else until scans in 3 months! And I have to say, that is an AMAZING feeling. 
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Journal entry by Mayzie Walker

THE SCANS ARE CLEAR! THE SPOT IS GONE!! TENLEY BEAT CANCER!! 392 days since she was diagnosed and it’s GONE! We are SO excited to get back to “normal”! 

I pictured the scans. November the spot is barley visable, January it’s bigger and darker, February the same, and May it’s GONE. I REPEAT GONE! 

Her oncology team is so excited for us, and we gave them team Tenley t shirts! We come back in 3 months for scans again and while they don’t want to see us for medical reasons, there sad to not see us for 3 months again. 

As you know last summer Tenley didn’t get to go swimming at the lake, or do any lake activities. THIS YEAR SHE GETS TO. Port comes out Friday in a quick outpatient surgery. A week of recovery and she can do WHATEVER she wants. WE GET A SUMMER!! 

We can’t thank everyone enough for the constant support. We appreciate you SO much. We will be having a party to celebrate, time and place TBD. All depends on COVID.

As for now, a COVID test and I’ll update Friday after surgery. 

Journal entry by Mayzie Walker

Brain MRI ✔️
Blood work ✔️
Neurology ✔️

Scan results tomorrow, neurology went good. 
Blood work:
Hemoglobin 11.3 (Normal 11.6)
Platelets 146 (Normal 157) 
So looks good! 

Tomorrow we meet with endocrinologist, oncology, and social work. 

Ten is feeling good! Eating good as long as she takes her apetite stimulant. Getting some nausea early in the morning. Will update tomorrow! 

Journal entry by Mayzie Walker

In case you didn’t see my Facebook post: 

May 1st 2019

2 days late but a day we will never forget. Day 365 of Tenley being diagnosed with Medulloblastoma. One year. 

We had very mixed emotions about this, but overall it’s scary and very overwhelming.

The past year we have:
-Spent over 50 nights in the hospital, plus 30 days of chemo and radiation everyday in Rochester.
-2 months living out of hotel.
-2 surgeries.
-Numerous ER visits
-Several platelet and blood transfusions 
-Hair loss and growth
-GI tube
-Hundreds of blood tests

But not only have we endured the medical experience. We’ve given up a lot personally, work, college, and lots of things we’ve missed out on at 19 and 21.

Yes we are thankful treatment was done in a year, and Tenley is doing okay. But Tenley is still not NED (No eveidence of disease). There is still so much unknown it’s scary. 

I think these pictures depict how both myself and Tenley are feeling. We aren’t excited it’s been a year. How do you plan for anything when you don’t know what the next scans are going to say? 

We aren’t looking for a pity party, we’ve been very positive and real this whole journey. That being said this is how we feel right now.

What’s next? Scans are May 27th. 

🤍🧠🤍🧠🤍🧠🤍🧠🤍🧠 

#TeamTenley #TenleyStrong 

Journal entry by Mayzie Walker

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 🤞🏻

Journal entry by Mayzie Walker

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! 

Journal entry by Mayzie Walker

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! 😂


Journal entry by Mayzie Walker

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. 

Journal entry by Mayzie Walker

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. 

Journal entry by Mayzie Walker

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.  
Tenley’s Story

Site created on April 29, 2019

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