Austin’s bold journey

Austin and Mom

Austin and Mom

On April 9, 2010, Austin was diagnosed with a rare form of cancer called Alveolar Rhabdomyosarcoma.  It took me a while to figure out how to spell it.  We didn’t do anything about it that first night, because we were in denial.

Austin had been watching his something grow, since it was very tiny, right in his pelvis and he had just turned 14.  Austin and his brother Chance’s dad died five months before, so he was still trying to grieve the loss of his dad while watching this thing grow as a brand new 14-year old.

My whole life having children, I thought, “What would I do if something happened to my kids?  I don’t know how I would go on living.  I just thought I would have to die with them if anything happened.”  Chance is 19 now and he’s pretty much grown up the last three years by himself. I quit teaching to be with Austin at the hospital all the time.

Austin with Friends

Austin with friends

That day in April, we drove out of the hospital and I said, “Austin are you nervous?”  He said, “No, why would I be?”  I said, “Because this could be big.  You’re not afraid?”  Austin said, “here” and he pulled out his iPod and said, “Listen and do it!”  He turned up the volume as loud as he could and he played “Don’t Worry, Be Happy.”

Eventually, Austin needed 35 rounds of chemo.  He did 30 rounds, some were a week apart, some a day.  Thirty Rounds of chemo, very invasive, aimed at the tumors that were in his pelvis.  He also did 28 days of  radiation into his pelvis, which is the main area of your bone marrow production.  Of course, you sign your life away with every treatment, and you wonder if your baby is going to make it through the next one.  After 30 rounds of chemo they told us his bone marrow couldn’t take it any more.

We kind of prepared…and I spent every morning, waking up and going into his room, wondering if I was going to wake him up or if he was going to be gone already.  And I have to admit that nearly three years later, I still did that.

Austin went into remission for about nine months.  We had scans every three months.  We were told we were done.  Nothing more we could do, it turned out great. Then, in February they told us “Great news, no tumors.  But, there’s something wrong and we don’t know what it is.” It took them a couple of weeks to learn that he was in bone marrow failure, he had Myelodysplastic Syndrome. His only option was a bone marrow transplant. Thank God we found two perfect matches, both 22-year old boys. On June 27th, six months after Austin’s 16th birthday, we gave him another birthday and he got his bone marrow transplant.

They told us we’d be in the hospital for months.  That not many kids with Rhabdo beat it and it wasn’t probable, but Austin knew that he would beat it.  He told me, “What did I tell you that day?  Don’t Worry, Be Happy.”  So we spent five weeks in the hospital.  It was a miracle and we got to go home.  The next day he had scans and two days later they came back and told us the Rhabdo was back in his pelvis.Austin with performer Justin Kauflin at 2012 Event
Austin had brand new successful bone marrow and the Rhabdo was back.  They let us out of the hospital.  At 100 days they did a bone marrow biopsy and we knew he was doing fantastic.  We were getting back with life, he had friends over, spent the night over at a friend’s house, he had been to movies (he got movie passes from There With Care and they also fixed his dad’s watch for him).
In October, the doctor called and said, “The Rhabdo is in the bone marrow.  We’re in a difficult point now.”

Austin posted on his Facebook account:

  • Myelodysplastic Syndrome, check.
  • Stage lV Rhabdomyosarcoma, check.
  • Leukemia Blast, check.
  • Pneumonia, check.
  • Large Staph Infection, check.
  • Appendicitis, check.
  • New Tumors, check.
  • Gallbladder falling apart with gallstones, check.
  • (I’m adding…Cancer in Bone Marrow, check.)
  • Graph vs. Host Disease, didn’t get it yet.

He wrote, “Eight things that should have killed me in the past two and a half years, but couldn’t.  Just one more thing to go.  Bring it on.  GVHD (Graph vs. Host Disease). “My favorite number is nine, so I shall be fine.  After I beat it.”  – Austin

I really appreciate all There With Care has done to help families like ours. I was a first grade teacher and I haven’t taught in three years. There With Care cleaned our house, brought us groceries when we needed them, gave us gas cards so that I could take Austin to the hospital, brought us Thanksgiving and Christmas meals. I could go on and on. Things that we just didn’t feel like we could do at the time. Thank you for that.

Austin’s fight with cancer ended on March 12th.  We hold his beautiful smile, and his “be happy” approach to life, in our hearts forever. – All of us at There With Care

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