Saturday, May 23, 2015

MRI update, and 494 comments later....

Just now finally got the last of the content from the old CaringBridge blog copied over here.  If I had counted how many comments had been left over there before I started transplanting them, I might not have followed through with it!  494 is a huge and humbling number representing a lot of love for Mark.

Thanks to all of you for showing such love and concern for Mark and our family.  We have always shared your comments and replies with him when appropriate.  I like to encourage him with the power of prayer and remind him that the (old) blog has been visited over 10,000 times!  That's a lot of love!

So, a little more about Mark's MRI update from this week.

"Before" above, and "After" below
Here is a picture I took as our Oncologist was showing us a comparison of scans from Mark's initial diagnosis, and following all surgical and radiation treatment so far.  If you click on it you can see it a little bigger, but it is still hard to make some detail out.  The top two scans are "before", the bottom two are "after".

If you look at the one on the upper right "before" image, you will see a large dark area in the middle, the upper section of this dark area are the ventricles which had swollen with cerebralspinal fluid because the normal passage to the spinal column was intermittently being blocked by the tumor.  This swelling was the source of Mark's headaches.  The tumor is just below that, on the right... it is a slightly lighter color of gray and is about the size of the Oncologist's thumbnail in that picture, the white vertical line on that image cuts right through the center of it.

And now you can see why the surgery was so dicey and why initially it was thought to be inaccessible.  They got to it from the back of his head, by going under the brain but over the cerebellum and then "reaching down" to get to it while trying to not harm central vascular structures.  Five hours.  Two neurosurgeons.  Still takes my breath away.

On the upper left "before" image, the glare makes it harder to see as well, but basically the all-white mass in the very center is the tumor, located centrally below the swollen ventricles.

What we don't have here for you to look at are the post-surgical MRI images from January, which showed how much of the tumor was removed - and how much remained.  Although about 75-85% was taken, it was still very easy to see what remained of it at that time.

Now, on the lower left "after" image, there is no discernable tumor remaining, all of the brain and tissue is the same shade.  Likewise, on the lower right "after" image, I was unable to see anything remaining of the tumor.  Of course there could easily, even probably, be cancerous cells remaining not visible at this low resolution, which is what the upcoming chemo is supposed to address. It is obvious in these lower two images that the ventricles have returned to their normal size.  The Oncologist is pointing at the cyst mentioned in Wendi's previous update.

In contrast to the tumor, which appeared lighter gray than the brain when scanned, the cyst appears darker, suggesting strongly that it is not associated with the tumor being attacked, although the Oncologist was careful to say they couldn't totally rule it out.  Much more likely, he said, is that it is merely a tissue reaction to the radiation treatment, probably mostly fluid-filled.  He said there is no course of action to take on it right now, as it is not causing any immediate problems.  Best case scenario it shrinks over time now that radiation has ceased.  Can't rule out that it might grow and need to be addressed at some point.  And of course worst-case scenario is that it is something malignant, but he really went out of his way to downplay that as a likely outcome.  They will just watch to see what it does, and its appearance has no effect on the planned chemo treatment protocol that is set to start on June 1.  We will get another look at it after his next MRI, scheduled for two months from now.

Mark's ongoing fatigue had started to concern us, but they also told us that post-radiation fatigue up to eight weeks after treatment ends is expected, not unusual.  This is part of why the chemo treatment he is about to start did not commence immediately upon his return from Houston, he needed the time to bounce back from radiation.  On the other hand, it is kind of annoying that right when he should start to bounce out of it, the chemo will start.

So, back and forth we go, from good news, bad news, good news, newsy news.  Part of our new normal, right?

Mark wishes you all well, and thanks you for your continued prayers and support.  He is far from out of the woods by any stretch, but we have also been blessed so far in that nothing has yet come up to delay or hamper his treatment.  Hopefully we can get into this, escape major complications, and have the treatment run complete before Christmas and his 12th birthday in December.

Thanks for reading, and God bless.

The rest of this post is the 28 guestbook entries from the old CaringBridge blog, copied over so there is a record of it here.



By Karen Dahl — May 14, 2015 10:16am

My grandson Sam was with you at the RMH in Houston.  He's coming back to Wisconsin today.  All the blessings to you and your family as you go through this journey, one none of you wanted, but yet you remain strong.  I am amazed at the courage and determination displayed by parents (my son and daughter-in-law included) when faced with the hard decisions they must make for their child and their family. I hope the future holds only good news for Mark and all of you!


By Danielle Knowles — Apr 14, 2015 12:59am

We are praying.


The Knowles Family


By Danielle Knowles — Apr 2, 2015 2:21am

We are praying for all that Mark needs and your Family.

God Bless,



By Danielle Knowles — Mar 16, 2015 1:03am

We are praying for many more good days.

The Knowles Family


By Maria Ritter — Mar 10, 2015 10:58am

I have attemp to send several messages, sorry if you get them all.

Dont know if you knew the Diaz family, from St Thomas they too have to endured  all the pain of seeing their son going to a rare form on cancer.. He is doing well, it's been 7 years and it was too during Lent.. God is with you all the time, you can hear Him in the silence of your heart, it's not easy but He is there.. My prayers to Mark and your family..and now will play the song you mention, I will pray for Mark and all those who suffer from cancer, ( and I know about the pain, I have lost several family members of the same, including my living sister, which I had asked to pray for your son)  Blessing...


y Danielle Knowles — Mar 10, 2015 12:18am

We are praying for your precious son and your beautiful Family.

The Knowles Family


By Kim Boughton — Mar 5, 2015 10:47am


We as a family are praying for all of you and that the Lord will continue to guide each and every step on this journey.

The Boughtons


By Danielle Knowles — Feb 16, 2015 12:37am

We will pray.


By Danielle Knowles — Feb 16, 2015 12:36am


By Pat Jaekel — Feb 13, 2015 10:57am

Danny and I are praying for all of you--Mark, Wendi, Frank, and the other children. This affects all of you, we know. Keep hanging on.


By Danielle Knowles — Feb 6, 2015 12:58am

Dr. Wallach’s call in information M-F 2-3 CST  (888)379-2552   (I think this is the number to use).


By Danielle Knowles — Feb 6, 2015 12:57am

and some of the other episodes are on youtube


By Danielle Knowles — Feb 6, 2015 12:46am

Potential Resources


By Danielle Knowles — Feb 6, 2015 12:45am


By Stephanie, Jessica & Cameron Hatton — Jan 31, 2015 1:11am

Thinking about you every day and hoping for the best possible outcome.


By Jennifer Christman — Jan 29, 2015 1:31pm

Frank, Mark and family... you are all in my thoughts and prayers.  Mark, I do not know you but from the stories shared on here and on your Dad's Facebook you are one special young man.  Wishing you a speedy recovery and a check in the win column.


By AC Jacobs & Linn Jacobs — Jan 28, 2015 7:50pm

Get well soon! Our prayers are with you.


By Heather Owens & Family — Jan 27, 2015 11:17pm

Hello friends, we just heard about this today and immediately started to pray for Mark.  Prayers of healing and endurance.


By Ashley Bright — Jan 27, 2015 9:13pm

We are praying for you! CC here in Casper sends prayers as well!


By Rose Brown — Jan 27, 2015 7:47pm

Mark, our prayers are with you all, I hope you get better soon. You will never know just how loved you are.


By Danielle Knowles — Jan 27, 2015 6:16pm

We are praying.

The Knowles Family


By Gretchen Tully — Jan 26, 2015 10:31pm

Hello Billingtons,
You have been in our prayers and we are now praying for you and your entire medical team. We are comforted to know that God has His hand on Mark.  We miss all of you at CC - it's just not as exciting without you and look forward to your return.
the tully family


By Sue & Drew Snyder — Jan 26, 2015 7:09pm

Dear Wendi & Frank,

We want you to know how much you and Mark and your entire family are in our hearts and minds as  you face this challenge ahead.  We pray that God will keep you strong and that Mark's surgery will be the path to a new future for him.  Never give up hope!

Sue & Drew Snyder


By Danielle Knowles — Jan 18, 2015 11:45pm

You are in our prayers.

The Knowles Family

Patrick & Danielle


By Danielle Knowles — Jan 13, 2015 2:00am

Dear Frank & Wendy,

Please know that Mark and your family are in our prayers.

Much love,

Patrick & Danielle Knowles


By Much love, Grandma — Jan 3, 2015 7:15pm

Mark, you are always in my thoughts.  I will be there with you in spirit when you have your surgery even if I am in Hawaii.  I love you heaps and bundles.


By Love, Aunt Sue — Jan 2, 2015 11:31pm

Hi Mark, I'm glad you had a great Christmas!  2015 will be a happy and healthy year - that's my viewpoint and I urge you to make it  your viewpoint as well.


By Karen Myers — Dec 24, 2014 8:16am


I love you SO very much!    I have been looking at the pictures from you visit this past summer and everytime I do they make me smile as I remember how much fun we had.  I am proud of you for your courage.   I am looking forward to the 3rd of July game with you!

Love and hugs from your Aunt Karen


  1. Thank you for the update. I feel much better now and I hope Mark does too. He is such a brave boy and I love him so much and I am so proud of him! Love, Mom/Grandma

  2. We continue to send good vibes your way. Thank you for keeping us updated on Marks journey! The McGinley family

  3. You are probably one of the bravest people I know. I thought I suffered from issues related to my health but you on the other hand have a lot more to deal with than me. I should be a lot more grateful. My husband is always telling me to be thankful and after reading your blog I will be, thanks.

    Kacey @ Glendale MRI