SarahStrong Brain Tumor Awareness

Sarah update because it's been awhile. We had a Neuro visit today, 3 month check up. Sarahs hands and feet have been causing her alot of pain, she has peripheral neuropathy and newly diagnosed today with secondary erythromelalgia.

Peripheral neuropathy happens when the nerves that are located outside of the brain and spinal cord (peripheral nerves) are damaged. This condition often causes weakness, numbness and pain, usually in the hands and feet. It also can affect other areas and body functions including digestion and urination.

Erythromelalgia is a rare disorder that causes intermittent sensations of burning and redness. It primarily occurs on the feet. In rare cases, it can also affect the hands, arms, legs, face, and ears.

Needless to say, very uncomfortable and painful.
Once again no real treatment. Headaches, nausea, fatigue, vertigo, adrenal insufficiency are all part of the daily routine. Still lots of meds with their own side effects.

I have had a couple people ask about progress on social security disability, she was recently denied for the 3rd time. We have a NEW atty that is fighting that but still no real income and unable to work.

For all those that have taken the time to read and keep up on Sarah's journey, We appreciate you!

Sarah update....
Sarah was able to go home yesterday. The final diagnosis is early signs of sepsis and adrenal crisis. Thankfully Carah and I realized that when we saw her and gave her the emergency cortisol shot while EMS was on their way.
So much to be thankful for this Sunday afternoon...
Huge Thank you to Pasco County Fire House 19! They were awesome! NorthBay hospital by far the best hospital around!! From security, volunteers, nursing staff and doctors, every single person was so incredibly nice and happy to help.

Sarah update:
As alot of you saw we had gone to the Noah Kahan concert Tuesday night. Sarah was not feeling 100%. Wednesday morning Sarah was running 102.7 fever, lethargic and could not get her up. We called for EMS and was transported to North Bay. They have run all sorts of test even a lumbar puncture, we are waiting on results to come back but sounds like we will be here a few more days. Keep her in your prayers

Update 07/25/23
Sarah recently had an MRI. While the tumor itself is stable, the MRI did show white matter of the supratentorial brain, likely reflecting chronic small vessel ischemic change.

Where the tumor is located is an issue. It is along the lateral aspect of the left medulla and around the left vertebral artery on her brainstem.
Sarah has had increased numbness and pain in her hands and feet, nausea, pressure feeling in her head, fatigue and an increase in seizures. Basically just sitting there causing havoc.

Unfortunately Sarahs case us not textbook. It's treating symptoms with meds and more meds which seem to cause more issues.
I know when Sarah was initially diagnosed we asked for suggestions on 2nd opinions and we were completely inundated and overwhelmed with the entire situation. I am reaching back out to you all for recommendations or suggestions . We cannot continue to throw medications at the situation. We need to find someone that has an idea of what can be done. We as always appreciate your love and support.

Our apologies for not catching everyone up on the Dr. Visit from Monday.

So recently we found that the neuropathy in Sarah's feet is at 78% severe nerve damage and her hands are at 52%. We asked about how we can try to fix our improve this and we're told not to go down that rabbit hole.
Right now immediate focus is on Sarah having acute pancreatitis and her liver and spleen are enlarged. We are following up with another Dr on Friday morning. We are still working on getting her disability thru the state, it can take until August before a decision is made. In the mean time if anyone needs help doing a few small things, filing, organizing anything that she can make a few dollars doing, she would be happy to have the opportunity!

Sarah Howsare Brain Tumor Expenses, organized by Tammy Howsare 11/30/2020... Sarah is on long-term disability which will run out this coming year. S… Tammy Howsare needs your support for Sarah Howsare Brain Tumor Expenses

As we come to the end of 2022, we find ourselves with a lot to be thankful for. It's been a little over 4 years ago since the brain tumor diagnosis. There have been improvements and some setbacks, but at the end of the day, Sarah is still standing and fighting. Her strength, courage, and beautiful smile keep us in awe most days.

As a mom, watching the difficulties she experiences on a daily bases hurts my heart, but seeing her strength and grace to get thru them makes me so incredibly proud!

Next week, Wednesday, we have an appointment with a specialist to see if they can help with the neuropathy (numbness and pain) in her hands and feet. Feb 1st is MRI day at Moffitt.

There have been a lot of you who ask about disability. We are still trying to get the state system to cooperate. She has been denied twice. Let's hope 3rd time is the charm, but I have been told they have until Oct 2023 to make their decision. In the meantime, we all pitch in to make sure our girl has what she needs.

Please continue to keep her in your thoughts and prayers. Keep sending her those positive vibes. Those are what gives her the strength to get thru those tough days, to not give up and throw in the towel.

Appt with Sarah Howsare at Moffitt went ok. Dr. not happy with swelling in hands and the level of pain in her hands and feet. Took 14 tubes of blood. Checking everything under the sun. He has an idea but not willing to discuss until labs come back. We will know more in a couple of weeks.

Tomorrow thru Nov 5th is International Brain Tumor Awareness Week. Take a minute to send all those affected by this terrible disease some positive thoughts and prayers this week. Remember not all wounds are visible, be kind and patient with people. You don't know what people are going through, what it takes for people like Sarah just to get out of bed and do the simple daily life things.

Tomorrow thru Nov 5th is International Brain Tumor Awareness Week. Take a minute to send all those affected by this terrible disease some positive thoughts and prayers this week. Remember not all wounds are visible, be kind and patient with people. You don't know what people are going through, what it takes for people like Sarah just to get out of bed and do the simple daily life things.

So we just realized we haven't updated since July. Things are pretty stable as far as the tumor goes, symptoms are about the same... nausea, headaches. What has become worse is the neuropathy in Sarah's hands and feet and extreme nerve pain in her hands. As you can imagine trying to do every day things that we take for granted she struggles with. Picking up a cup or phone but can't feel those things in your hands. We appreciate your continued support, thoughts and prayers. We are still fighting the state to approve sarah for disability as she still cannot work due to her above symptoms and seizures.
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Sarahs GFM is still active in the bio on this page or if you would like to donate to the to help spread awareness to brain tumors and research. See link below

Home - American Brain Tumor Association The American Brain Tumor Association is the nation’s oldest nonprofit organization dedicated to brain tumor education, support, and research. Forty-five years ago, in 1973, the ABTA was founded by two mothers determined to find answers that, at the time, were not yet available. Since then, the ABT...

It's been a while since we have given an update on Sarah.

Lately Sarah has not been feeling well. Nausea is as bad as it gets, severe fatigue, sweating and then freezing, I think her temperature gauge has gone crazy. Neuropathy in her hands and feet is still a significant issue. The nerve pain in her hands is unbearable most days. Joint pain makes getting up moving not alot of fun. Her new GP saw her today. Unfortunately these things she just has to live with. He said he reviewed her history and he knows she has been through hell, But she has to keep fighting every day, no matter how tired, how much pain, she has to push herself to do things.
She goes back to Moffitt Monday to see the Endocrinologist and Neurologist. July 20th is MRI day.
We are still fighting for disability, the attorney is very hopeful this time.
Keep sending those positive thoughts her way.

For those that are new to the page, please see that About portion of Sarahs page and it will give details on her journey to current situation ❤️

Today we had a visit at Moffitt with Sarahs neurologist. We were able to get some answers,
which was very nice for a change. Doc feels like the tumor may have shifted or grown slightly. Not enough growth to show on an MRI. The neurological signal issues Sarah has are due to the placement of the tumor on her brainstem and worsened with the long-term use of Reglan. The medication she is on, Artane and Gabapentin are currently the best medications that she can be on for the treatment for the tremors, nerve pain, dyskinesia, dystonia, neuropathy in her hands and feet. The signal issues in her hands and legs cause them not to work at random times. As an example she can just be walking along and all the sudden can't take another step, the signal from her brainstem needs time to catch up to her cerebral cortex, so she has to sit a minute, or she can go to grab something but her hand falls short or misses. The dystonia is most noticeable in her hands, after a few minutes her of fine motor skill use her hands will cramp up into a claw and have to pry her fingers apart. So we are going to increase the dosage of those meds and see if that helps her. So needless to say, we keep moving forward

MRI UPDATE, good news is no progression. Unfortunately the symptoms of nerve pain down both arms, in both legs, along with the numbness, nausea, vomiting, headaches, hand cramping, general weakness and fatigue are all brainstem/neurological issues that are all things Sarah will need to live with, the meds that she is on is the best treatment offered at this time.
For those who don't know her work life was short lived. Due to seizures, tremors, neurological issues she was unable to stay working.
Disability has denied her twice, we will have to find her an attorney to help.
While no tumor progression is great, she is still feeling defeated due to the symptoms.

Thank you all for the positive vibes, thoughts and prayers.

It's hard to believe 3 years ago our lives changed so much. This Christmas we have so much to be thankful for. Alot of you have been following Sarahs page and looking for an update.

There have been alot of ups and downs this past year. Sarah went back to work at the hospital about 6 weeks ago, unfortunately the tremors, seizures and circulation issues increased so she had to leave 2 weeks ago. 12 hour days are just to much. Hopefully she will be able to find a job that she can do part time and not as strenuous on her body.

Sarah is in good spirits and we will be meeting with doctors after the first of the year. Mid January is MRI time. Time to do a check up to see what shenanigans Toby the tumor is up to these days.
In the mean time, we are going to enjoy Christmas and be thankful for where Sarah is at. No wheelchair, no walker, living her best life.

Thank you for your continued support and as always keep those positive prayers coming ❤

Sarah update: it has been a few months since we have updates.
I am so incredibly proud of our girl, she has come so far in the past few months let alone the past 3 years . Yes, there are still medical issues, but Sarah is her living life, she is not letting the medical stuff get in her way, she is pushing forward....she is starting back to work at the hospital on Monday!!!! Everyone take a moment to wish her luck!

Well, today makes a week since I had my Lumbar Puncture at Moffitt. Shortly after I started having debilitating headaches which brought me to Morton Plant Hospital where I had a Blood Patch done. I have attached a picture that explains what a blood patch is for those of you that do not know what it entails. That didn’t seem to work because I am still unfortunately having these terrible headaches. One of the Neurologists here tried another treatment using Magnesium and Fluids... unfortunately that has not worked either. So today I will be getting another Blood Patch, of course we are always Optimistic about these things. I really hope this works and these awful headaches go away! I unfortunately have been relying on very strong pain medicine to relieve the pain, which I have never had to use pain medication for anything before and I do not like using pain medication for lots of reasons. So again all we ask of everyone is Positive Vibes, Positive Prayers, Good Energy, and Good Vibes! it’s always fine!

I am also going to attach my gofundme page, I know a lot of you have donated before and I so so much appreciate you all for sharing it, donating whatever you could, and being so supportive. Unfortunately medical bills just keep climbing and I am still waiting on my letter to be accepted for disability or not! 🥺🤞🏼🤞🏼🤞🏼 Sharing my story for Brain Tumor Awareness or Donating what you can is all appreciated deeply! Thank you all for your love and support and constant words of encouragement, it means the world and more to me! ♥️🖤

https://gofund.me/bf667cb4

They did the blood patch for the spinal fluid leak this morning. Unfortunately the debilitating headaches are still there. They are keeping our girl another night and trying some different meds to see what they can do. She has double vision and her speech is very off. Need lots of those positive vibes

Update: Spinal fluid leak, they are going to do a blood patch procedure and seal it back up


Well I’m back... severe, debilitating headaches. Possibly something to do with the Lumbar Puncture that I had a couple of days ago. I am being admitted for now, they are trying to figure out the best treatment plan for me to move forward later this morning.

Today started rough with throwing up blood, chest pain, vision issues, and a day in the ER. Sarah was cold so her Dr made her into a warm blanket burrito lol... we are home now, follow up with eye doctor and increasing topamax to help with intercranial pressure.

Sarah had her appointment at Moffitt, our follow-up for the spine MRI. While there are no lesions or tumors on the spine, they did see prominent ventral epidural venous plexus noted throughout the lower thoracic as well as the lumbar spine. (The vertebral venous plexus is generally described as a thin walled, valveless net- work of veins within and surrounding the vertebral column and extending from. cranium to pelvis. It consists of an internal division which lies within the epidural. space with direct connections to the vertebral bodies) basic terms hers are swollen, with that and all of her symptoms, our next step is a lumbar puncture to check her intercranial pressure, they are going to do some nerve testing and calcium testing. The lumbar puncture will be under anesthesia because she cannot lay still for periods of time.
Lots going on and as always keep sending those positive thoughts and prayers.