Thursday, June 20, 2013

The Difference a Year Makes

I wrote this a while ago and didn't post it.  I am posting it now because I want to close the loop.  I'm July of 2013, Michael (patient #37916) was officially discharged from St. Jude.  Dr Michael Neel said, "if you have a problem, call us, otherwise I'll see you never.  Please spell my name right when he signs his NFL contract-football is BIG in TN)".   I ran the Christie Clinic Half Marathon in May 2013 and our team raised more than $5000 for St Jude and I trained for the St Jude Half in Memphis Dec 7, but it was cancelled due to bad weather.

The following is what I wrote previously:

Exactly one year ago on Wednesday, June 13, 2012, MG and I returned from a fabulous EF Tour to Belize.

Upon our return, TGF sat me down and told me that there was something wrong with Michael's (who was 6 at the time) arm.  I knew that he had some appointments while I was gone, but I thought it was more of an Ortho/Chiro matter and trusted that TGF had it under control (which he did) and so I didn't worry while we were on our trip.

On Wednesday, June 13, 2012, TGF said the Drs. said it might be an infection in the bone or it might be an old break or it might be a tumor.  If you have ever been through something like this (and I sincerely hope you never do), you know the hot feeling of dread and panic that settled into my chest and my very bones.

On Wednesday, June 20th, we had a CT scan at the St. Jude Clinic in Peoria and met with the head of Pediatric Oncology there at the St. Jude Clinic.  You see, St. Jude works to eliminate the worst outcome first and thus they told us it was cancer, they told us that they would defer to the wishes of St. Jude in Memphis, but that perhaps we could arrange for Michael to have his CHEMOTHERAPY treatments at St. Jude in Peoria, but that they would let St. Jude in Memphis make the final decision on that.   I was stunned, but I think I did a reasonably credible job of holding it together so that Michael didn't get freaked out.  The Dr. was very kind, gave me her card which contained her personal cell number and offered to answer any questions that I/we had.  Lots and lots of "what if" questions were swirling in my head, but I asked none of them.

On Friday, June 22rd, the Pediatric Oncologist that we met with called us and we were informed that St. Jude in Memphis wanted us there on Monday, June 25th and then 20 minutes later, St. Jude in Peoria called and made arrangements for us to fly to Memphis that Monday.  TGF drove to Memphis and Michael and I flew.  St. Jude pays for the patient and 1 parent to fly if it is necessary.  Monday through Thursday of that week was a blur.  Security and privacy are strict at St. Jude and they wouldn't let TGF into the gate until Michael and I had checked in.  Immediately upon arrival Michael had a huge blood draw and xrays and we received a schedule of appointments for the following days and we were instructed to check with scheduling every day to make sure there weren't additions to the schedule. 

Anyway, to make a long story short, about 4 really stressful, really traumatic weeks later, we were relieved to find that Michael's tumor is a Benign Osteo Blastoma, very rare in kids his age.  It should never occur anywhere else in his body, his body may consume the tumor eventually or in the exact words of Dr. Neel, "the biopsy may piss it off and make it grow faster". 

We went back to St. Jude in August, 2012 and again in October, 2012 and in January 2013 and we go back in July 2013.  In January, Dr. Neel said that if nothing changed in July, he would "discharge" us.  What that means, I do not know, but I at this point almost exactly a year later, I feel the need to mark the end of that traumatic year.  Could it have been worse?  Absolutely!  Am I complaining?  NO WAY!  I don't know if I will ever recover from this St. Jude experience.  I have tried to express my feelings on this many times and each time I come up short.  I started sending money to St. Jude Monthly in August of 2012 and will continue to do so until the last day I draw breath, I formed a team and ran the Illinois Half Marathon as a St. Jude Hero on April 27th, 2013 and I have registered to run THE St. Jude Half Marathon in Memphis on December 7, 2013. 

Our experience at St. Jude was amazing.  It was a comforting, supportive place.  During all the turmoil of that time, I can't help but be SO thankful for not only the care that Michael received, but for all the support that was provided to our family.  We had housing and meals and transportation provided by St. Jude.

I am thankful for my mom and dad.  We basically abandoned MG and fled to Memphis.  This is what we needed to do and I know she was well taken care of and I even offered to bring her to Memphis with us, but MG declined, she said, "You have to get Michael's arm thing sorted out, I am fine at Grandmas".  Mom and dad fed the pigs and took care of our dogs and took care of Mary all while they were as panicked as we were.  My oldest son, Jack, stood tall and strong and propped ME up on more than one occasion while he continued his Grad School studies.  You see, he googled and I didn't.  He was more terrified than we were.  Word to the wise never ever google unless it the absolute last resort.  My friends, Karen and Miranda and Ellen and Kim and my knitting homies, James and Ted and Leslie and Olga.  TGF's brother Steve, who no doubt played a huge role in getting us to St. Jude as quickly as we did.  He will never admit, perhaps and I really don't want to KNOW, but I am thankful.  The thoughts and prayers of those who love us literally held us up during that horrific time.  

If I failed to mention someone, please take no offense.  Your help was and is greatly appreciated.  

A picture of Michael in the day he was discharged from St Jude.