Supporting Matt's battle with Osteomyelitis

From Matt:

My dear friends,

On my first morning home, I wanted to write you a letter to let you know

how I’m doing, and to fill you in on what has been going on. Just to start, I have

been absolutely humbled by this outpouring of love. I am truly filled with

gratitude. Thank you for your kindness and generosity of spirit. I am so

relieved to be here at home, surrounded my 3 sweet daughters and my loving

wife. This entire ordeal has been absolutely brutal, and I am very thankful to be

resting at home in my own bed.

This all began 3 months ago when I started having some pain in my left

arm, which I chalked up to overuse from playing music. I began physical

therapy, which provided no results and left us back at square one—with the pain

increasing daily. The next culprit was a pinched nerve from the neck, so I went

in for an MRI followed by a visit to a spine specialist. He found nothing

abnormal in my neck and sent us on our way. The pain at this point was

becoming so intense that I couldn’t sleep, and spent most of my time only able

to fixate on the unrelenting pain.

So Rachel figured we should get an X-ray of the shoulder just to see if we could see what was going on in there. So I went to an Ortho clinic for an X-ray. The doctor saw me there, took the x-ray, and brought the pictures to me to see. She started off my saying “I’m sorry to have

to give you this news,” and told me that she found a lesion on my left humerus

bone. I saw the picture of my oddly shaped bone, but was still confused as to

why she was apologizing to me about bringing this news. Then it began to sink

in that this bone lesion that she saw was really a bone tumor that was either

benign or malignant, and would require an MRI to get a definitive answer. This

began the most surreal and frightening time of my life.

As it was a Friday, I had to wait until the next week to get an MRI. After

the long wait of not knowing through the weekend, I was needing an answer one

way or another. Not knowing and having to wait was torture. Meanwhile, it was

the weekend of Hannah’s 10th birthday, so Rachel and I had to carry on with the

birthday plans and to try our best to act normally, which was hard to say the

least. Monday rolled around, I got the MRI, and the Doctor called with the

results, which were inconclusive, as they took an incomplete picture of the area,

and couldn’t diagnose anything. So we had to wait even longer to get another

MRI and to wait another 48 hours for the results. So it ended up being several

days of purgatory before we got the final results from both the MRI Radiologist

and my primary care physician.

Both the radiologist and my PCP confirmed the results: a low-grade cartilage malignancy, a chondrosarcoma. This was our greatest fear realized. My PCP then referred us to an orthopedic oncologist to determine our course of treatment.

Generally considered a very treatable form of cancer, we tried to stay

positive, knowing that I was in good fighting condition, but the fear was

overwhelming. Our livelihood depends on the health of my arms, and to have

that jeopardized was petrifying. Naturally, we knew we were going to be pinned

again the wall, and that our family’s well being was being deeply threatened.

At that point, I was finally able to get some narcotics to help with the pain

which at this point was all I could feel. Unceasing, dull, throbbing pain, that

often had me in tears. It was a desperate time—nothing but deep pain and fear.

Another source of fear was financial, as our health insurance is not great to say

the least, so we knew we had to act fast to make sure we could stay in our

home and not disrupt the girls’ life anymore than it already was.

That’s when my dear old friend Houston Perry initially made our

GoFundMe page to help with this looming financial challenge. And you all

showed up in a way that blew us all away. I will never forget how this outpouring

of love and assistance helped us. It was a showing of love toward me and my

family that still to this moment brings me to tears. To feel the love, compassion

and support of so many is so deeply humbling and gave me so much strength to

carry on.

Thankfully, the orthopedic oncologist Dr. Ginger Holt saw me very quickly.

The pain at this point had really taken its toll and when she first saw me in the

office, she had an immediate air of concern for my well being. She then took

another X-ray and the bulge in my bone had increased very quickly and the pain

was getting worse. But then she said something to us that changed our

course. “Cancer doesn’t hurt this much.” She suspected that this could be

either cancer or possibly a bone infection, but couldn’t be sure until she

operated. We were obviously greatly confused as we had been told by 3

doctors that I indeed had cancer. Dr. Holt, was very concerned with my arm,

and wasted no time, getting me into the O.R. the very next day. We noted her

concern and her haste to get me in the O.R.. So potentially not cancer? What’s

going on here that has her so concerned? There were 2 potential outcomes

given to us: 1. open up the arm and confirm the presence of cancer, and close it

back up and schedule me for a bigger surgery, or 2. look at this quick growing

bone bulge and see if it was some kind of infection.

The next day, after the surgery’s completion, we had the full picture.

Instead of seeing cancer, she saw a bone with a deep staph infection, that if left

untreated for much longer would have broken open and I would have become

septic and likely died. The nurse called this “a major, life saving surgery”. This

explained Dr. Holt’s insistence for an immediate operation. Dr. Holt and her

team drilled out the entirety of the bone and cleaned it all out and introduced 3

antibiotic beads inside the bone and closed me up. The plan was to be sent

home to recuperate in the “home hospital” program with a picc line to my heart

for 6 weeks of daily IV antibiotics.

The first wave of emotions was obviously relief, as I didn’t have cancer.

The second wave, which is still continuing, is realizing how close I actually was

to death. Then it started occurring to us that we started a GoFundMe page

based off the information that I had cancer, which we now know isn’t the case.

This set off a wave of unease that I was fraudulent with our original call for

donations. But it was all we knew at the time.

I was reassured by all that were close to me that anyone who donated

only cared about me and my family and our well-being and would be equally

relieved that I wasn’t facing a cancer battle. However we are still facing the

cost of my operation, 3 days in the hospital, the upcoming physical therapy, and

my continuing inability to earn a living, and the further unknown of how long I’ll

be sidelined. So in an effort to be totally transparent, I offer this account of this

hellish journey so you all have a more complete idea of where we are coming

from.

We still have no idea of the total costs for all the medical services, and

don’t know when I can get back to work. So knowing we aren’t facing financial

ruin is a great comfort as I recuperate.

We have been paying out-of-pocket for all of my MRI’s, doctor visits and

therapy, prior to hospitalization, and will unfortunately have to pay out of pocket

for the “Home Hospital” program that I have just started. Nurses will be coming

to the house during the week to help with the picc line and the administration of

IV antibiotics. I’ll then start physical therapy to get me on the path of being able

to play music again, which will also not be covered by insurance, but is essential

for me to get my life back. While we are greatly relieved that I don’t have cancer,

the cost of this surgery, hospitalization, 6 weeks of “home hospital” and

continuing therapy to get me back to normal will likely be staggering, and to

know there is a cushion in place from the generosity of many is helpful beyond

measure.

I thank you all and I also thank my wife, who literally saved my life by

quarterbacking this medical situation and not letting up until we got home and

safe. She was unrelenting in her support and her fierce determination to get me

the right help in the right time.

My family and I are eternally grateful for all of your help, and I am so relieved to know that I am on the mend, and that I got to tell my girls that I didn’t have cancer and that their

Dad was going to be alright. I love you all, and I truly find myself a changed man

after this cancer scare, and a very close brush with death. So, thank you all for

helping to lift me up during what has been the worst time of our lives.

I’ll keep in touch. Love, Matt