You can see the Tillamook Rock Lighthouse way off behind Mark.
One of our favorite places to go to the beach is Ecola State Park in Oregon, where if you time it right not only is there a huge sandy beach to play on at low tide, but at the south end of the beach there are rocks to climb on and tidepools to explore and find sea stars, crabs, urchins, anemones... makes for a great day trip.
We are just a few days out from Mark starting up his six months of maintenance chemo, which will make this a fairly long Summer for him with ups and downs, but at the moment his spirits are pretty great. It was a good day.
We got a card in the mail from the staff at the MD Anderson Proton Therapy Center in Houston.
We've been getting notes from friends and strangers alike via Facebook and email and the blog for months now, which has been lovely and uplifting, but this is the first time anyone in the treatment process took the time to do something like this. I mean, pretty much all of the healthcare people we've dealt with have been terrific, but sending us this card was especially sweet of them to do.
Hello Billington Family! We just thought we'd reach out and let you know that you are in our prayers. We hope everyone is getting back into their normal routine. We miss you all. It was such a pleasure to get to know your family. Thanks for always doing your best to show up on time, and being patient with us if we were not on schedule. Wendy, you are indeed SuperMom! We were impressed with how you stayed on top of everything. Oh wait, is it Wendi? ☺ Wendi + Frank, you are AMAZING parents. Mark is the bravest little guy we know. Bella is a sweetheart. We all miss her hugs. May God continue to bless you all, ♡ Gantry 1 "Beam Team"
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.
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!
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By Danielle Knowles — Apr 14, 2015 12:59am
We are praying.
Blessings,
The Knowles Family
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By Danielle Knowles — Apr 2, 2015 2:21am
We are praying for all that Mark needs and your Family.
God Bless,
Danielle
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By Danielle Knowles — Mar 16, 2015 1:03am
We are praying for many more good days.
The Knowles Family
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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...
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y Danielle Knowles — Mar 10, 2015 12:18am
We are praying for your precious son and your beautiful Family.
The Knowles Family
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By Kim Boughton — Mar 5, 2015 10:47am
Wendi,
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.
By Stephanie, Jessica & Cameron Hatton — Jan 31, 2015 1:11am
Thinking about you every day and hoping for the best possible outcome.
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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.
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By AC Jacobs & Linn Jacobs — Jan 28, 2015 7:50pm
Get well soon! Our prayers are with you.
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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.
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By Ashley Bright — Jan 27, 2015 9:13pm
We are praying for you! CC here in Casper sends prayers as well!
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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.
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By Danielle Knowles — Jan 27, 2015 6:16pm
We are praying.
The Knowles Family
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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.
praying,
the tully family
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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
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By Danielle Knowles — Jan 18, 2015 11:45pm
You are in our prayers.
The Knowles Family
Patrick & Danielle
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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
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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.
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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.
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By Karen Myers — Dec 24, 2014 8:16am
Mark,
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!
We've moved Mark's updates here to the Blogger platform, because it gives us a great deal more control over content and format compared to CaringBridge. As part of the process, I have collected numerous photos from the past few months that may or may not have made it onto Facebook, but definitely didn't get to the blog, so here they are.
February 4: About a week after Mark's initial major surgery
in Portland, having a fun moment with Mom.
Just a couple of days before half the family departed to Houston,
this was one of a set of family portraits we had taken
(picture by RLP Studios - http://blog.reversedlensphotography.com/)
March 27: Mark discovers how much he likes Pappadeaux Seafood Kitchen
April 4: Mark's appetite recovers, his first "real" breakfast since starting chemo
April 14: Chemo at MD Anderson Cancer Center
April 14: Mark getting ready to settle in for a round of proton radiation therapy.
April 14: Mark enjoying some peace with a
book on the rear patio at Holcombe House
April 14: Playing on the lobby piano at Holcombe House.
April 15: Chicken noodle soup was frequent dinner request
April 15: Gabriella pretty much ran the Ronald McDonald house
while she was there. She personally arranged getting her picture
taken with all of that day's youth group volunteers.
I showed up just in time to find out about it.
April 15: Watching funny cat videos with Mom before bedtime.
April 16: Patiently waiting through a consult checkup visit.
April 16: Another day at Proton with the wonderful staff.
April 16: Chilling in one of the movie lounge rooms at Holcombe House,
watching some Harry Potter, on the night before his last day
of radiation treatment.
April 17: Checking in for his last day of chemo in Houston,
April 17: Checking in for his last radiation treatment appointment.
April 17: "Ringing out" after his last radiation treatment.
April 20: Dinner at Holcombe House's "Five Star Day",
where the converted the facility into a sort of kid's 5-star resort for the day.
April 20: Mark and Dad watching something during the "Five Star Day" dinner
April 24: Departure day, chilling before heading to the airport.
April 24: On the flight home, weary of flying, just three hours left.
April 25: Mark holding his nephew Nicholas, where he noted
with humor that they are both sporting the same hairstyle.
April 27: Thanks to Aunt Cindi, Mark got a hat, jersey, and baseball bat
signed by all the Tacoma Rainiers players!
Mark's scans looked good. No increase, maybe a little smaller - they're not sure. He does have a cyst now in his brain, but they said for now we'll just watch that, they're hoping it's nothing.
So it has been about two weeks since the last update.
We have been trying to make our home life as normal as possible now that we have the family back together. Aside from Mark's hair loss and the bin of medicines on the table that Mark has to take twice a day, you might not notice anything was amiss.
Mark is still tired a lot of the time, but has been slowly improving since the chemo treatments in Houston ended. Still, we knew the chemo and especially the radiation would change him, and we have seen that happen. He is struggling with short term memory and retention, physical coordination, and hand strength. His walk is not so sure and steady. He needs help buttoning buttons. We've backed off some of the school stuff because he was getting frustrated at not being able to do things he used to do easily.
Mark's sense of humor has remained intact most of the time. He makes cracks about how nice it is to be home with his 4-month-old nephew Nicholas, so that he isn't the only one in the house mostly bald. He lately likes to spend his time reading, watching Pink Panther, or funny cat videos. Sometimes he shows us a clip, forgetting we've already seen it.
When he is tired, he gets irritable easily, as any of us would under these circumstances. Usually it is aimed at 8-year-old Joseph, deserved or not. The other day I turned off the outside water faucet under the kitchen window, and Mark barked accusingly from in the kitchen "Joe! What are you doing with the water??" First off, it wasn't Joe. Secondly, even if it had been, it might have been legit. We've tried to make light of it, and remind Mark that just because something random happens does not make the event a crime, nor automatically involve Joseph. Joe is becoming accustomed to being a default little brother target and thankfully isn't taking it too seriously.
Charlie the fishing guide holds Mark's biggest catch!
Earlier this week, Grandma Crofford and Pop-Pop were in town. Pop-Pop had arranged a guided fishing trip for Mark on the lower Willamette River, for sturgeon. He did this once before in 2009, taking me out with Jim and John. This time it was John and Mark going out with me and Pop-Pop. It was cool, cloudy, but didn't rain. Pretty good weather for fishing, and the guide knew what he was doing. It was all catch and release fun, and we likely caught over 20 sturgeon in three or four hours, several of respectable size over 4' or even 5' long. Mark reeled in a few, but got tired out quickly, it was hard work. He recharged at his favorite place afterwards, getting mac 'n cheese at Red Robin.
That's what has been happening so far since they've come home.
Wendi has been immersing herself in groups of other parents going through similar trials and sicknesses, and is becoming well-versed in the language and culture of cancer treatments, outcomes, miracles, and so many sorrows. We have come to learn, although Mark's Oncologist hasn't come out and said it as far as I know, that Mark's pineoblastoma has about a 50% survival rate. Even with that, the heavy burden of chemo treatment will be very hard on his young body, almost certainly causing permanent damage to various systems. Although very difficult to accept or type out, we are arriving to the place where we accept that Mark is never going to make a "full" recovery, it's just not in the cards he was dealt. If he survives this, he will always have health challenges and mental deficits to overcome. This is just our new family reality.
It is not our place to ask why this had to happen to Mark. And it is not a time for unguided platitudes of what God's plan is. All we need to know right now is that Mark's life has touched literally thousands of you through this blog, through Facebook, through the fire service, and through the CC home educators community. We will never know what impact that has had on your lives, how that has affected other lives of those you know for the better, raised awareness and education, influenced life decisions, or inspired others to whatever they are called to. It is not our place to know, nor do we need to know. All we are asked to do is to hold Mark's hand as he follows his walk with God, wherever that may take him. That's why we are here, and that's what we will do.
We have not given up hope, it still remains. This was caught early and Mark has received cutting edge treatment. Tomorrow is Mark's first follow-up MRI since returning from Houston. Mark is fighting and we are fighting with him and for him. And with that I humbly ask all of you again, to please hold Mark and our family up in your continued prayers, and to renew the prayers for all of us in your prayer communities, for which we will always and forever be grateful. God bless.
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.
