Consult w/ MD Anderson

Dear Friends and Family,

Robynn's trip to Texas was not exactly what we had hoped for. They confirmed the rapid spread of the cancer and concurred with the treatment plan I had spoke of before(5 days of in-hospital chemo and 16 days off). She was given the option of staying in Texas for treatment or coming home and starting treatment this coming Monday. Her decision was simple...she wanted to be home with her family and friends.

We will not know the effectiveness of this treatment until she has undergone 2 rounds of chemo and returns to Texas in 7 weeks. At that time, they will evaluate her progress and let us know how her body is responding. Whatever the case, chemotherapy will be ever present in her life, as her doctor has informed her that Angiosarcoma that has Metastasized is not cureable.

The details of how the in-hospital treatment will go down, are unclear. Not sure of visiting hours, if there are visiting hours, may or may not be able to receive things in her room. I will let you know when things are made more clear.

What I do know is that when they arrive home Friday, they have asked for some private time with just themselves and Brady and Hailey. Please be respectful of this request and refrain from visits and phone calls throughout the weekend.

They are so very aware of your love and support and will continue to rely on your prayers to see them through this unimaginable time.

God Bless You All,

Shelley

Please stop whatever you are doing and say a prayer for Robynn and Brian. They are beginning their day w/ MD Anderson.
It is in God's hands and he hears us!

Love you all,
S

Dear Friends and Family,

I apologize for the lapse in posts, but I really had no new news to make you aware of. We have been patiently awaiting the trip to MD Anderson scheduled for tomorrow and figured that would be the next time I would have new information to pass on. Unfortunately, that is not the case any longer.
Robynn has been doing pretty well until this past Friday when she experienced attacks of severe nausea,vomiting and cold sweats. Brian contacted their local Oncologist and she advised them that if another "attack" occurred, he was to take her to the ER immediately. Another "attack" occurred this past Saturday afternoon and Robynn was taken to Davis Sutter ER. They ran some tests, but as before, they did not feel equipped to handle her case so she was taken by ambulance to Sutter Roseville Medical Center.
What we learned next was nothing any of us expected or were prepared for. The cancer had rapidly returned! There were numerous masses on the liver and a 10x6cm mass left of her liver completely crushing her stomach. The masses were also causing internal bleeding . This reality was beyond our comprehension and left us all stunned! What was more devastating was when Brian told the on-call Dr. that Robynn had to be in Texas on Tuesday, and he responded "she's not going anywhere". There was no hope of getting her stable enough to make a commercial flight to Texas. All hope seemed to just disappear. My Mom was already in Sacramento and my Dad and I jumped on the next available flight.
Robynn not getting to Texas, was NOT a possibility! As most of you know, our family is not real good about taking no, for an answer;). So the fight became more fierce on our side! Phone calls went out to anyone and everyone that had a private plane. While this transpires, Robynn is admitted to the Trauma ICU and undergoes a total of 5 blood transfusions, 4 plasma transfusions and 1 platelet transfusion. The hope of a private plane getting her to Texas was starting to fade when we realized we had to find a medical crew to accompany her as well.
IN WALKED GOD...
Robynn starts to stabalize. The vomitting and pain subside. Her labs and blood pressure improve. "Hope" has arrived! All we have to do is keep her right where she is! Brian called the airline direct informing them of Robynn's circumstances. He lined up a wheelchair, early boarding etc. Now we wait...
Sunday is a very good day! Monday gives us a little scare when she starts vomitting when they administor potassium in pill form. Since she can't tolerate that she has to endure 5+ hours of IV potassium. We finally make it out of the hospital about 5pm Monday and now we have about 13 hours til take-off. Tick-tock...tick-tock...
With God as her Pilot and Robynn in 1st class (compliments of my brother Matt) , Brian and my Dad left Sacramento and arrived in Houston w/out incident! Hip Hip Hooray! They are at their hotel and anxiously awaiting their 1st appointment at 8 am tomorrow morning.

Our deepest gratitude to you all, for your countless prayers and unwaivering faith! You have knelt before Him and He has answered! He is so Good! His presence surrounds us and we know he will take care of Robynn and all who love her.

God Bless you!

XOXO,
S

Prayer...When life gives you more than you can stand...kneel!

Robynn met with her surgeon for her 4 week follow up. He was very impressed by how great she looked and how well she is healing. He asked how the appointment with Dr. Bobolis went and we let him know well but that Robynn was heading to MDA to get their opinion. He was very happy to hear that, saying they would have the most experience with something as rare as what Robynn has. Yet another vote of confidence for MDA, Robynn and I can't wait to get there.

Dear Friends and Family,

Brian has created a "blog" where we will post updates on Robynn. We have listed all the emails that I have sent out so far.
Brian said she is getting stronger and stronger and has even put back on about 10 pounds! Woo Hoo! We'd like to fatten her up as much as possible before her treatments start.;)

Thank you again for all of your thoughts, prayers, support and offers of help.
Your greatest gift to us without a doubt, is your prayers! We know He knows how LOVED and FABULOUS our girl Robynn is, but it doesn't hurt to CONSTANTLY remind Him!

http://robynnsbattle.blogspot.com/

Love to all!

S

MD Anderson Trip

All we know so far, is that Brian and Robynn will fly out Tuesday the 26th and start her 5 day session of appointments and tests the following day. When they are done compiling all the information they will come up w/ the best treatment plan for Robynn. MD Anderson has a department that will handle all of their travel plans and hotel reservations at a discounted rate. If I get any more info about this trip I will surely pass it on!

Keep praying!
XOXO,
S

#14 MD Anderson Appt

WOW! You guys are FABULOUS!
Robynn has an appointment at M.D. Anderson the 27th of this month.

Keep the prayers flowin!

Love to all,
S

#13 1st Onc Appy with Dr. Bobolis

Robynn and Brian just met w/ Dr. Bobolis. She informed them that she has only treated one other patient w/ Angiosarcoma, but it was of the breast not the liver. Since that is her only experience w/ it, she was unwilling to give a prognosis. What she did tell them, was that Radiation therapy should NOT be done. It is much too intense and the liver might be unable to handle that. Aggressive Chemotherapy is a must! Two different types will be used w/ Robynn. Treatments will last for 5 days and must take place in the hospital. She will have a break for 21 days and then start up again. This treatment will last over the course of 6 months. They will then evaluate the success of this treatment and decide where to go from there. Dr. Bobolis was very frank about the horrendous side effects of chemo and assured her she would lose her hair during her 1st hospitalization. Dr. Bobolis spoke very highly of M.D. Anderson and said she would implement any therapy that they recommended if she had the capability to do so. If Robynn qualifies for a “Clinical Trial” through M.D Anderson, her treatments would most likely take place in Texas and could not be duplicated in Sacramento.

M.D. Anderson emailed Brian yesterday to let him know the Pathology lab was reviewing the biopsy slides to confirm her diagnosis. If they agree w/ the current diagnosis they will move onto the next level in their acceptance process.

Please continue to pray for Robynn…
The “battle” is just beginning and she is determined to beat this! We need as many troops as possible, so gear up…this is war!

XOXO,
S

#12 Prelim PET Results

Today was a pretty good day! I got to meet a couple of Robynns girlfriends who came to visit and bring her treats and gifts.;) Afterwards, Brian, Robynn, Brady, Hailey and I went to mass for Ash wednesday. We were greeted by their parish priest who informed us that they had added Robynn to their prayer list.

Later this afternoon we got a call w/ the preliminary report on her scan. We do know that it has not spread to her abdomen or lungs...WOO HOO! There is evidence that it did spread to one lymph node(left clavicle area) but no other lymph nodes were affected, there are also two very small tumors on the right side of her liver. While, we would have liked a 100% "clean scan", we know it could be MUCH worse. We are very relieved to know the spread of the cancer is pretty localized and now we know exactly what we are dealing with. The next step is figuring out the best treatment plan. That will start w/ Dr. Bobolis next week and hopefully continue on w/ M.D. Anderson.

Brian,Robynn and our entire family are overwhelmed w/ all of your prayers,love and offers of help. We have a long road ahead so pace yourselves!:)

Love and thanks to all,
S

#11 PET Scan

Hello all!

Robynn went today to get her P.E.T. Scan in Roseville. We have no results yet and do not expect to get "formal" results til Tueasday of next week when she meets w/ her Onchologist. I can hear all of you now..."I thought her appointment was today". Yes, you are all correct, but it had to be changed.
They have got all of Robynn's test and records copied and ready to be sent off to M.D. Andersin in Austin,TX. They will review all of her medical information as well as do thier own testing on what was removed during surgery. If all goes as planned they should be in Austin around the middle of this month.

Robynn and Brian's outlook is beyond anything I could ever hope for! They are out to beat this, and anything less than that is just not an option. Being here w/ them is truly an inspiration and wish you all could have the same experience. It in itself is a miracle!

Keep praying! Your work is just beginning!:)

Love to all,
S

#10 Diagnosis Day

Dear friends and family,

I have struggled for hours on how to approach this news w/ all of you. I cannot begin to express my sadness and disappointment over what I am about to tell you.

Robynn has been diagnosed w/ Angiosarcoma (cancer of the lining of blood vessels). The next step in Robynn's care is to get a Nuclear Body Scan to assess the extent of the cancer. On Tuesday she will meet with an Oncologist to discuss the next step in treatment.

This obviously is not the news we have hoped and prayed for. Please continue to pray for Robynn,Brian,Brady and Hailey as well as our entire family.
Ask that the Lord keep us faithful,hopeful and strong through this battle.

The out pour of support has been overwhelming! Many of you have asked what you can do to help... I am trying to figure that out. If we need anything I have no problem letting you know.

Thank you again!

Love to all,
S

#9 Home

She is doing very well. She is happy to be home and wanted everyone to know how loved and special she feels. She was overwhelmed w/ all your prayers,support and offers of help.

Thank you again from our entire family!

Love,
S

#8 Heading Home

She is on her way home right this second…HOORAY!
The pathology reports could not identify the tumor as benign or malignant. They are sending it out to another lab that has the resources to come up w/ the proper diagnosis. She has a Dr. appointment scheduled for Thursday and hope they will have the results by then.

Thank you again for your support and prayers

S

#7 Out of Bed For 1st Time

I talked to her myself for the first time today and she was very upbeat.
She went for her 1st walk which took more out of her than she expected.
She even got a shower! Woo Hoo! She still is struggling w/ the pain medication upsetting her stomach,and she got her 1st look at her scar....it's a DOOZY, but she isn't gonna let that get her down
either!;) Tuesday looks like her target date for coming home. I will send their home address in my next email for those of you that wanted to send something. They have an hour drive home, so the less they have to haul the better. All in all she is the ULTIMATE TROOPER and has an amazing outlook as always!
Keep up your prrayers...

Love,
S

#6 Looks Incredible 2 Days Post-Op

Brian said she looks and feels a little better w/ each passing day. She got her hair washed yesterday w/ some amazing "no rinse" shampoo that Brian was pretty impressed w/ and she even put some make-up on. If that's not progress, I don't know what is!;) My Mom arrived this morning and will help keep the kids on their nomal schedule. I will head up there for post-op care as soon as she is released. Things are looking pretty good, but please continue your good work w/ God!!! He listens!

XOXO,
S

#5 Out of ICU

Robynn has been moved to room 232 @
Sutter Roseville Medical Ctr
Address: 1 Medical Plaza Dr, Roseville, CA 95661
Phone: (916) 781-1000

S

#4 Day 2 of Recovery

Talked to Brian this morning and Robynn's progress is so great, that they should be moving her out of ICU sometime today. AMEN!
She is still in quite a bit of pain and battling the nausea from the pain medication, but is keeping a positive outlook!
I will let everyone know her room number when I get it from Brian in case you would like to send her some cheery get well wishes!

Love,
S

#3 Recovering

Brian says she is getting lots of rest. He is so impressed w/ the care she is getting and could not be any happier w/ the Doctors and nurses.
She is communicating a little better, but is still in a lot of pain. All in all she's making good progress.

Brian thanks you all again for your prayers and support!
Love,
S

#2 Out of Surgery

Robynn is out of surgery and in ICU. She will remain there for 2-3 days(no flowers/balloons etc until she is movedL) Brian said the Dr. was very pleased with the surgery. They removed the mass w/out further damage to Robynn and her other organs. The internal bleeding is under control and they expect Robynn to regenerate any blood lost without a problem because she is so physically fit. They have sent the mass to the lab and hope to find out the results by early next week. There was also a very small growth on her spleen that they are going to "watch". The Doctor felt it was too much for Robynns body to address this during this surgery. The mass that was removed was so large that it had been shoving itself up into her diaphragm and literally smashing her stomach down to the size of a silver dollar. She is in a terrible amount of pain and is unable to communicate. Brian is keeping constant vigil and knows the next few weeks are going to be pretty brutal!
Ultimately, they are thankful for the surgery's success and are grateful for everyones love support and prayers! When I have further info I will get it to you.

Love,
S

#1 Emergency Surgery

Dear friends and family,
Please keep Robynn,Brian,Brady,Hailey & our entire family in your prayers.
Robynn is in surgery right now to remove a mass the size of a large
grapefruit from her liver. The mass has caused excrutiating pain and
internal bleeding. The Dr's can't really give us a whole lot of info
because they just have not seen very many cases like this. We are hopeful
it is benign and that they will be successful in removing as little of her
liver as possible. Brian is seeing that her care is the best available! We
expect her to be in the hospital about 7 days. Her recovery at home is
going to be a long road, but we all know what an AMAZING trooper she
always is!
Please pray that God watches over our VERY special girl!
Love you all,
S
I will give the next update when I have one.