Meet Buster: My Big, Fat Tumor

…. can someone say TrAuMAtiC ???

The MD Anderson we heard so much about is NOT the MD Anderson we experienced. 

to remind you:  All of Morgan’s medical records and history were requested by MD Anderson.  It’s policy to get the records before an appointment can be made.  The records were received and the appointment was set.  We were told by others who had experienced MD Anderson that they would walk us through the process and give a second opinion.  Our patient relations person assured the same and that it was a one day appointment.   New at this, we took it at that and expected a one day appointment.  I thought that during this appointment they would use Morgan’s medical records, case information and their expertice to give us a second opinion and sell us on why he should be treated there @ MD Anderson.  

The appointment was set:  Tuesday, January 12, 2010 @ 9:30 a.m.  We were delighted at the opportunity to go!  Kasha was able to take the two days off work, I found us airfare, and Mark arranged the hotel.  We arrived at MD Anderson on Tuesday morning at our scheduled time.  Kasha had all the admittance paperwork ready and we paid the copay.  We waited.   An hour after our scheduled time we were called back to an exam room.  We first saw a nurse that went over some paperwork.  We then waited and saw a nurse practitioner, who basically told us we were not in the “right place”.  We were on the sarcoma floor (original diagnosis Ewings Sarcoma) and we needed to be in pediatrics (real diagnosis Neuroblastoma).    It went downhill fast from there.

I went for a bathroom break and more drinks for the crew.  While I was gone the final doctor of the day came in to tell Morgan and the others that we was setting up a meeting for us to see a pediatric oncologist who specialized in Neuroblastoma the next day.  OMG.  First, we all thought, did you just read the first paragraph of all the records we sent?  Second, we knew we were here, we need to stay- Neuroblastoma specialist- gotta stay.  The doctor asked Morgan to start a 24 hr urine sample, requested  x-rays, blood work, and a cat scan.   The scheduling clerk started working on Morgan’s needed procedures and we headed for the elevator to find food.

We rallied to figure out how we could make this work.  We were scheduled to check out of the hotel in 2 hours and get on a flight that night.  I called the hotel to extend one of the rooms, called Southwest to see about changing the flights and Kasha called into work. 

Morgan, Kasha and Mark stayed, I came home.  The rest of the story I didn’t experience first hand, but was told it was all crazy except for meeting Dr. Zage who specializes in Neuroblastoma.  We have said it before, but I’ll remind you.  Nueroblastoma is mainly a childhood cancer, it is quite rare for Morgan to have it at his age.    I hear Dr. Zage was the only immediate positive out of the trip.  He had a great manner about him, was informative and took some time to answer questions.   

The blood work revealed that Morgan’s hemoglobin was low and needed a transfusion.  That was scheduled for that night, the cat scan was scheduled for the following day.   The transfusion went on throughout the night- not  a great experience and the cat scan was cancelled the following day.  Morgan’s kidneys were not functioning well enough to take the die and so it was cancelled. 

The additional hotel stay was a bust (didn’t sleep, got an all-night transfusion, the wheelchair fell apart, the painful taxi ride to the airport and a long flight home.  

When I talked with Morgan he was still recovering.  It was traumatic, frustrating, and he experienced a lot of pain while he was away.

We thought we would have more answers and maybe an idea as to where to go from here…. we don’t.  It’s not that clear cut anyway.

The positive:  We found Dr. Zage.  Once a cat scan is done, maybe we can send on to him and have him review?  

Next: Morgan is having out-patient surgery tomorrow (Tuesday, Jan 19 ) to replace his stents.  I am hopeful that this will relieve his kidneys and help them function better to allow for a scan and also help get rid of this 3 week plus UTI. 

Needs:  Many of you have asked how can we help?  What can I do?  Right now, Morgan & Kasha need financial assistance from us.    The monthly expenses have continued to rise; co pays, prescriptions,  daily medical necessities cost them on average over $300 dollars a month.  This is an area where you may be able to and want to help.    Morgan also needs encouragement!  Cancer SUCKS and life is really rough right now!  His world has stopped, while ours keeps going.  It’s nice to remind him that we haven’t forgotten, we’re thinking of him, praying for him and we’re still here!

If you can, will you help us?  send a note and/ or contribute what you can to”Team Morgan”!  Morgan Strub, 8202 N. 21st Drive B206, Phoenix, Arizona, 85021.  If you can contribute; you can paypal “Team Morgan” c/o paypal id: service@m3se.com.  You can add a note of encouragement there too.

Thank you for following Morgan and our family on this scary journey.  It means so much to have your thoughts, prayers and support.