<div>I will start from the beginning. Back in March, Chris randomly woke up one day with some face numbness, and we thought really nothing of it because we had just moved to a new area and chalked it up to allergies. I bought some allergy medication, and that did not seem to help. We decided to go to urgent care who referred him to a neurologist. They reached out to insurance to try and get approval for an MRI however after a week or so after this, one day coming back from work, he called me letting me know he wanted me to take him to the ER and that his vision was messed up. He described it as his eyes not keeping up or a lag. I took him to South Buffalo Mercy, where they first said nothing was wrong, but he begged for an MRI. After the MRI w/o contrast, the nurse came back and said, "I am so sorry," and we were admitted and then an MRI with contrast. From there, it was a vicious cycle of hospital, medical rehab, and then back to the hospital. We had a "tour of the Buffalo hospital system," as I like to call it, because we were at so many hospitals at different times. During these times, he was treated horribly and really not listened to at all. He was put on high-dose steroids and then weaned off a handful of times, and every wean-off landed him back in the hospital as his symptoms got worse. He was diagnosed with MS (later realizing it was a misdiagnosis), and the doctors said, "You are getting better, and it is all in his head."
</div>
<div>A small list of procedures that were done in this time:
</div>
<div>Multiple MRIs (there was a mysterious mass in the brainstem)
</div>
<div>Multiple CTs
</div>
<div>Lung biopsy
</div>
<div>Multiple lumbar punctures.
</div>
<div><br />
</div>
<div>After being home for a small time and things not getting better, he asked me to drive 378 miles to the University of Pennsylvania because they are a great hospital, and this was his last hope. I packed up a small bag, our dog, and him into the car and drove from Buffalo to Philadelphia on Memorial Day weekend.
</div>
<div><br />
</div>
<div>Since then, he has been in the hospital system here or medical rehab since then. They believe that this is a rare lymphoma that is in the brainstem but they need to have a positive brain biopsy. He has been called a medical mystery and told he was going to be in educational books more times than I can count. Shortly after coming down to PA, his work let him go after us letting them know he very likely has lymphoma. He has had so many MRIs, LPs, a brain biopsy which came back inconclusive due to the amount of steroids he was on (60mg) , skin biopsy, bone biopsy, very high heart rate at times (160-180 range) I sure I am missing something. He has also been to Medical Rehab a handful of times which usually resulted in him coming back to HUP because he would decline and not be able to participate in the rehab.
</div>
<div><br />
</div>
<div>The neurology team as well as the oncology team have been very concerned about how to try and treat because of WHERE the tumor is. They tried a round (5 treatments) of PLEX (plasma exchange), which did wonders, but once stopped, his symptoms came back. He was on Cytoxan, which was also helping in combination with prednisone, but none of these were solving the problem, just helping keep it at bay. But we were happy because he, for the first time in a LONG time, was able to come home. After about a month of being home, we got a call from his neurologist asking us if we would be okay to wean the steroids and stop the Cytoxan, then admit him into the hospital once things got bad enough, and then they would wean completely off to try and do another brain biopsy and this time hopefully yield a positive result so that we can proceed with a permanent treatment.
</div>
<div><br />
</div>
<div>We have also reached out to the Mayo Clinc to see if they can help, in reaching out (in September) we found out that his medical file is 803 pages. They have gotten back to us but at this point he would not be able to do the car ride there.
</div>
<div><br />
</div>
<div>Now you may be asking, what are the symptoms he is experiencing. The severity varies from day to day because of the tumor and inflammation on the brainstem as well as paraneoplastic, but he has face and mouth numbness to the point he has gotten stitches in his tongue from biting it and not realizing it. As well as there are more times than not I have come into the room for the day and he has dried blood around his mouth, extremity numbness, double vision to the point where we have to patch one eye so that the double vision subsides, he has trouble getting food from the plate to his mouth because he has tremors. If he can walk that day, his balance is usually wrecked, so a walker is needed as well as a nurse or two so that if he falls, he can be caught.
</div>
<div><br />
</div>
<div>All through this, since he was let go from his job in June, I moved us from Buffalo to South Jersey once it became evident that he would need A LOT of follow-up care and have been paying for COBRA so that he can continue to get the care he deserves. With the new year approaching, his deductibles will reset, so I will be paying out of pocket for the care as well as COBRA. I have already submitted him for disability; however, it can take months to even hear back, not to mention if I have to appeal. I also have applied for SNAP so that I can use the money I would use on groceries to put toward his medical but I am awaiting that as well.
</div>
<div><br />
</div>
<div>With that all being said, any help would be amazing and more than appreciated. I am truly not one to reach out and ask for help, but I am desperate.
</div>
<div><br />
</div>

Cindy Whitcraft

Anonymous

Jamie Kemman

Olga Grankina

GCV Productions

Zach Squires

Marlyn & Chris Damiano

Nicholas Amoriello

Linda Bisaccia

John Rasmussen

DeMarkus Kirby

BONNIE ZASTERA

Kurt Zastera

Andrew Markell

chester koneful

Antionette Jordan

Delaney Lison

Help Chris Fight Rare Brainstem Lymphoma

Help Chris Fight Rare Brainstem Lymphoma

Il reste encore $6,745. Aidez-nous à créer une dynamique.