Meet Buster: My Big, Fat Tumor

Mark has spent the last week with Morgan, it’s refreshing to have him in town.  We celebrated his birthday together today.  Our b.b.bro…so big.  : )  I loved recounting memories- we are so proud of you Mark!  Happy Birthday!

Morgan,

I love to reminisce of our younger days.  We share such good memories; I love to recount them will all of us in the room.  The girls especially send my mind back to remember good days we shared as bleach blonde kids with dark tans running all over creation.  Good, bad and ugly….they love to hear of our adventures from - 6809 W. Windsor Blvd. 602-846-3117, our childhood home with holes in the back yard and bunk-beds in the bedroom.  I specifically remember the beds dressed with Star Wars sheets.  I wanted to bring those memories back to your mind too.  I thought  a Star Wars sheet set it might be fun for both you and Kasha the Star Wars fan.  : )

I wanted the sheets to be the vintage kind I remember, but it’s the new Star Wars of today; Star Wars “The Clone Wars.”  It all worked out though, because I opened them up to find some of the words that I would describe you as printed all over the sheets- I wanted to expand on the words  meanings  so you can see how special these sheets really are.  They now represent two meanings; nostalgic and admiration of your character!  You are a picture of honor and valor to me! 

Honor: 

•  - A good name or esteemed reputation.  To know you is to love you- you are a genuine, deep man with a generous heart towards others.  You are loyal, loving and believe in sharing vision for causes bigger than yourself.  You have created a network of family and friends who love and respect you.  You have changed our world!  FOREVER!   
• - Recognition:  Visionary, Founder and Webmaster of DIGIHITCH.COM.  You did it!  You had the vision and dream and you made it happen!  We will continue the cause and finish your goal- “Digihitch.com goes non-profit.”
• - Integrity:  firm adherence to a code, especially moral.  You have always had integrity; in life, friendships, business.  You are true, loyal, and loving.

 Valor:

• - Worth, worthiness, bravery.
• - Strength of mind, or spirit that enables a person to encounter danger with firmness.  Personal bravery.  You are a picture of brave to me- for the rest of my life I will reflect on all the way you have battled the pain and buster for so long- you’ve been so brave.  You have endured so much- I admire you and I reflect on your courage when I encounter situations I think I can’t handle and you are a tangible, real picture of inspiration to me.

I love you Morgan!  My profound respect is mingled with love, devotion and awe!  I will be an advocate for you and your causes! 

Love,

missy

Our family is overwhelmed with emotion and words cannot fully convey our gratitude.  Thank you for sharing your words of encouragement and showing you care through gifts of support.   It is moving to hear from family, old friends, new friends and all those Morgan has touched along the way.   I LOVE IT! 

Thank you to all those of you who have left sweet messages and gifted towards the expenses that have overwhelmed Morgan and Kasha- you are truly making a difference!  : )

Morgan is doing well- all things considered, of course.  He is a champion!  He inspires me everyday.  As long as I can remember he’s been more of a teddy bear than a fighter.  To fight is not his norm… to see him still bright-eyed and smiling at the world leaves me in awe.   All the pain he has endured over the last couple years… to be a witness to all the procedures and happenings since his diagnosis in June – is life changing.  You just can’t live the same.  He inspires me!!

 He sleeps a lot.  It’s the trade- off to managing the pain.  When he is awake- he is so alive, alert and engaging.   I love to just sit with him- soaking him up.  I look forward to our time together and can’t stay away really. … knowing our time has a limit- I am living with no regrets!  We have enjoyed some deep conversations, debate, tears (from me), good laughs, road stories, reminiscing, and good ole family times.  

President’s day weekend brought family and a friend in from California.  Morgan loves to spend time with his people and was so thankful they made the trip over to visit.  It had been some time since they had visited Arizona.  I hope to share some photos that were taken soon.  Thank you again to those who have come to see Morgan.

The weekend we are closing now has been quite eventful as well.  Michael, the oldest of us four turned the big 4-0 and had a 70’s shindig.  I need pictures- hilarious!  We gathered together at Morgan’s house on Saturday night for some birthday cake and ice cream and stories of course and then they left to throw a party.  Mark, the youngest- our jet-setter flew in last night for a visit and the festivities then out this morning.  He will be joining us again next week for a week and Morgan and I can’t wait for the quality time together.  He too will spend his upcoming birthday with us, March 2.  It’s been nice to celebrate all of our family birthdays together this year.  Mark has made an effort to be here to share them all with us. 

As I close, I’m reflecting on the notes that have been sent with the gifts- touching.  Morgan is living a life that has touched and changed people.  His story, our family, has already meant much to many.  I am a proud sister and am blessed to have began as a Strub and still belong to those boys.  : ) 

Thank you for following and carrying us in thoughts, prayers and with your tangible support!  YOU….. PRICELESS!!

We had a great weekend together.  The original Team Morgan gathered to make new memories along with recounting those we already treasure.

Morgan was transferred from the hospital to a hospice care house on Friday.  We’ve been told that the tumors have grown and his kidneys are unable to withstand anymore chemotherapy.  Managing his pain and quality of life is now our priority.

Morgan was relieved there would be no more chemotherapy.  He is tired and wants to be at home with Kasha and host his visitors there.  He loves his time with family and friends and even has a new baby to enjoy “sweet pea” is her name.  He’s been asking for a baby guinea pig for months, Mom brought her to him on Saturday.

Morgan is coming home today, Wednesday the 10th for “in home” hospice care.  Hospice is not about giving up!! It’s about being at home, managing pain, quality of life, and getting the best care possible.  It’s comforting to have hospice and their resources available to our family.  Hospice will provide Morgan with medication, medical equipment, support and more.  They are available to him 24 hrs a day/ and on call.  There will be nurse visits and doctor visits scheduled as needed.

You have asked what more does he want to do?  How can I help?  What are the needs?  Can I bring you a meal?  Your thoughtfulness is appreciated and yes, we need your help!  We have been unable to do it alone- you have carried us in thoughts and prayers, and now we want to take you up on your offers- we need tangible gifts of support.

We are doing a fundraiser- I want to raise money to show Morgan and Kasha our support.  Financial concerns weigh heavy on them both right now and this is something we can tangibly help them with.

There are those of you wh have followed this blog and wanted to help- this is how we need your help.  There are many of you who have freely benefited from www.digihitch.com with rides, resources, or even “surfed” on Morgan’s couch- who now want to give back to him.  This is how.  We have family members who have records of our family heritage for generations now from his research over the years- will you give back?  He has given freely, and blessed many- will you show him your gratitude and bless him?  I have amazing friends, you have asked if you can bring me a meal- would you consider contributing to my brother instead?  I am not ashamed to ask for help for my brother and Kasha.  I am one of his biggest fans, his advocate, a voice and we need help!!

It is our goal to take care of some of the past medical expenses and also cover Kasha’s time away from work (she is hourly and out of vaca/sick time) this month.  I’d like to gift the opportunity for her to spend these days with Morgan at home.

Where is your money going?  These expenses; lovenox shots 2/day perscription $90, oncology co-pay $30, diapers $30/wk, wipes, gloves, lube gel $50, vitamins/ suppliments$100, emergency room co-pay $150, unexpected Houston costs of missed work time and airfare change fees $500, accumulated monthly medical expenses approx. $600/ mo, household bills for this month over $2000.  It’s daunting to do it alone, we can rally as his team and make a difference.

Please be a part of this- we need you!

There is an existing and safe paypal account set up in Morgan’s name where he can receive money and turn around and pay bills from.  There is a comment section, please leave a comment of encouragement.  I’d love to thank each of you individually- please give me that opportunity.    Go to: www.paypal.com, create an account or sign in, click on the tab send money, to: service@m3se.com, enter an amount, click on the personal tab and select gift, click continue button.  On the next page scroll down to comment- please leave one there- I want to share with Morgan your words of encouragement and contact you myself to thank you personally.  If you need help or want to arrange something different- call me 602-432-1977.

Morgan is leaving a legacy, we are his witnesses- please join us!  Let’s lavish our love, encouragement and tangible support on him now.

I’ll be the first!!  … I love you Morgan!  My profound respect is mingled with love, devotion and awe!  I’m a witness to the legacy you’ve lived; I will be an advocate for you and your causes- always!  … check your paypal account! 

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.