Meet Buster: My Big, Fat Tumor

Morgan is resting and we are all still waiting for  answers and slowly processing what we have already been told.  

The UTI infection is being treated.  A  new blood clot was found in his right leg, but shouldn’t be an issue.  He already gets a Lovenox shot in the morning and the evening and has a stent  in place.  His pain relief has gotten a little better, he administers Delotid by button when needed.  We are waiting for the pain pump doctors to drain and reload his pump with a new med combo to get things under control again.  He had another MRI this morning, this should show us more of what is going on in there with buster and it’s busterettes. 

Damn buster- you really piss me off!  I hate you and if I could deal with you myself you surely wouldn’t make it!   Cancer SuCkS and it rips your world apart!  Your. world. STOPS!!!  heart. breaks!! ..and your life is forever changed!  This journey has taught me to embrace life and live differently.  I was close to my brothers before, but now- even closer and along with Nick, they truly are my best friends.  I have a deeper love and reliance on my God.  My regrets- we didn’t find buster sooner and I didn’t understand or appreciate Morgan’s love for the road earlier.

(sept ‘09)

Team Morgan, we are banding together in thought and prayer.  We need your encouragement and support!  Let’s let out those cheers and send your encouraging words – leave those comments!     : )

We are still waiting for answers.  They are running a lot of test right now to figure out what the new pain is, why a fever, and more.

• ultrasound, mri, x-rays, blood cultures and more I don’t recall-

Morgan has been in terrible pain for several days and hasn’t  able to get relief from the “installed” pain pump in his abdomen.  Today they added Delotid to his IV line, he can give himself 1mg every 10min up to 4 times in an hour.  I am told that 1mg would stop my breathing.

Kate and I were able to visit him today, Kasha was there and Morgan slept.  It was the first real rest he has had in days, while be it from medication, he was sleeping.  It’s hard not to be able to visit with him- but worse to see him quietly endure the pain.  Even when I leave the hospital, he and Kasha never leave my mind.  In constant thought and prayer. 

It’s heartbreaking really.  all of this, brings me to my knees and breaks me again.  I love my Morgan, to have to sit and wait and watch without being able to help, and keep waiting  for answers.  hurts!  I want to know what’s going on in his mind, heart, body, spirit…  I don’t want him to be scared, alone, and hopeless.  He is accepted and loved- as is.  I want peace, comfort, security.  I want him to know deep in his heart how much I love him.  I say it, I show it, but does he really know?  Others too that would stand up and say me too!!!   I want him to know  how much we admire him and how big our cheers are.  How much we want him to be ok, but how we will be here no matter what- all along the way. 

We’ve had some great times and experiences in the last three months without chemo and Morgan feeling decent.  I am reminded again how special the times are when he is feeling good.  We’ve taken advantage- but boy, we should do more!!  I’m already planning …  

be in touch…

… you have no idea how badly I want to answer that question…  truth is, we aren’t exactly sure. 

I did want to let you know that Morgan was checked into John C. Lincoln last night (Wednesday) with a fever of 102.  It’s thought to be the ongoing, 7 week , UTI, but they are running cultures to make sure.  He also had a 4 pint transfusion, his hemoglobin is low. 

I’ll keep you posted and try to get some recent pictures up too.  I love Morgan’s hair right now; it’s soft, fuzzy and sweet.  He’s been quiet lately.  Processing so much…    heavy…   

I know many of you haven’t seen him for awhile, makes me sad that you haven’t been able to spend the time with him.  Even when he is quiet, his presence is warm and comforting.  I love to soak him up- even if it’s sometimes in the midst of a “debate”.  He is such a sweet part of my life.  I am so thankful for Morgan-   

we’ll be in touch.

…. 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.

What do they all have in common?          We love Morgan and are fighting for his life! 

As we sat waiting for answers today we bantered, rattled theory, threw thoughts and reminisced of how we might have been stirred to believe one way or another.  Divided in theory,  but united @ heart.  

We were there to find the answers to LIFE!  How do we keep Morgan alive?  I want to keep him!  How simple and silly that sounds, but I love that boy and I want him here with me.  He’s got my blood and I still have so much to share with him.   I don’t want to lose him or leave him.  I want to take him home and keep him forever, as my girls would say.  I really can’t imagine my life without him.  

I love having brothers!  … like a husband is a witness to your life- my brothers are a witness to my beginnings (as I am theirs).  They know the true me.  I am understood and accepted on a different level.  They know what I come from.  What I was.  They can appreciate what I have grown to be, as I can with them.  We hold each other in check and can speak into each others lives differently than a friend, spouse or parent.   We have rallied and come alongside to support  each other in hard times.

We are there for each other!  Dedicated to be present, be real and NEVER GIVE UP!  … so as much difference as there may be- we are united!

Wonder twins power- ACTIVATE!

*****

MD Anderson update: They wanted Morgan there for more testing and to speak to a Neuroblastoma specialist tomorrow.   We were told it would be a one day appointment, so the extension was a surprise.  We were not prepared, but adapted quickly.  I came home, Morgan, Kasha and Mark are still there.   More updates to follow.

Morgan, Kasha, Mark and I are in Houston, Tx.  The travel here went well and we’ve had a great day being together.  Tomorrow is our appointment @ MD Anderson.  Kasha and her mother Ruth (Morgan’s caregiver by day) spent many hours requesting, gathering and sending MD Anderson Morgan’s medical records weeks ago and an appointment was sent.  Tomorrow is the day.  We will meet with a doctor to review his case and find out where we go from here.

Thank you for your continued thoughts and prayers.

My girls adore their uncles and they love to hear stories.   They ask me to reminisce and give them all the details.  What did you do?  What were you like?  Where did we go?  Who got in trouble?  What did you play?  ….

We had a family gathering at Mom’s house last night.  We were celebrating Christmas again with mom in her home.  It was a nice evening together, one of my favorites lately.  On the way home I was quiet and in thought.   I was thinking about the days ahead and a childhood memory came to mind.    When we were young, my family camped around Arizona often.  We would camp, fish, hike, explore.  We set up camp in a lot of great campgrounds around this beautiful state.

I remembered the time we were camping  and we took a family hike.  We hiked for what seemed a long time- Dad always loved to walk us, I know now that was a way to get exercise and tire us out.  On hikes I felt a freedom; we would explore, catch little creatures, find interesting stuff.  On this hike, Michael asked to head back to camp and my parents approved it.  Morgan decided to take after him and somewhere between the rest of us and camp Morgan went lost.   We could not find Morgan- where could he be?  I think I remember that we searched all over camp, we asked other campers and found nothing.  We waited at camp, retraced steps, searched, asked…. I was scared.  I was young- I thought he was gone and that we may not be able to take him home.  I was so scared.  I can only imagine how he felt.

It was hours later, still nothing.  Morgan is lost!! Where is Morgan??  The sun was setting.  I think I remember that the Rangers were notified and that they were searching or were going to start searching by helicopter.  We were still asking other campers, praying and searching.     We finally found him.  Other campers helped us locate him and we wound up making acquaintance with them and sharing a meal.  What a relief and a celebration to find him.

I’ve had some sweet times with Morgan over the last couple months.  I am cherishing these days that he feels well enough to hang out together.  I love to go pick him up and have him in my home; spending time together, letting the girls love on him , being together and making memories.

The LOST story reminds me of how scared I was.  How scared I am… what lies ahead?  what’s happening inside Morgan; physically, mentally, spiritually, emotionally?   I’m  scared.  I’m sad.  I’m mad.  I mourn.  I’m really scared.

He was over on Friday.  We had some interesting conversations- what we believe, how we disagree- what’s important to us.  These conversations were started and arranged around lists we are making.  We started with a LIST of lists to make.   The conversation went on, we made some lists and though our conversation he showed his passion about how important he feels it is for people to figure themselves out. 

A few of many questions to answer for yourself are: What do I believe?  Why do I believe the way I do?  What is my purpose?    What am I good at?  What do I love? Am I really living?  I am hopeful that he will share his own answers to these questions with all of you.   I encourage you to explore these questions on your own.  As a tribute to Morgan and what he is passionate about.   You have nothing to lose and everything to gain.

Are you lost?  get found!