Saturday, March 28, 2015

A picture for the weekend

From Wendi's Facebook:


Mark, in Lego Nirvana. Also the first pic of his "thinning" hair. He won't let us shave it; he just wears a hat everywhere. Tonight, with Grandma Crofford and Grandma Green in town along with Aunt Cindi, we'd planned dinner out at Olive Garden. But he's neutropenic (his white blood cell and neutrophil counts are low) and he's got a cold that looks like it's causing an ear infection. They considered keeping him at the hospital after his shot, but they sent us home, saying they'd probably see us later this weekend and no going out to eat. So the family is bringing us takeout and he's having a hot pocket for now while watching Guardians of the Galaxy and playing Legos. Hugs to you all!

Tuesday, March 24, 2015

And on it goes

(originally posted by Wendi)

Mark is now in week three of his treatment, and all things being equal, he's doing great. After the adjustments in his medicines last week, and the addition of a one hour iv bolus (fluids by iv), he has been feeling much better. In fact, I think the fluids are helping almost as much as the medicines, since he felt awful Saturday, which was his first day without them. So Saturday we spent most of the day resting, with a"brief" trip to the hospital to get his neupogen shot (this encourages his white blood cells to grow) because his white blood cell count (WBC) and his neutrophil count (ANC) were both low. On Friday I gave him the shot myself with a nurse supervising, thinking we would do the shots at home over the weekend, but our insurance would only cover it if it was done inpatient. It wasn't as hard as I thought it would be. One more new experience.

We had another new experience on Sunday - we caught the last day of the rodeo here in Houston. Jim was a bit disappointed. He was expecting it to be more "authentic"; dusty, tumbleweeds, wide open spaces, cowboys. There were plenty of people wearing cowboy hats, but it was all concrete and crowds. We spent more time in lines than on rides, but overall I think we made good memories. We chose the perfect ride to end the night on. It was called the Crazy Coaster and it was pretty crazy. We were all laughing at the end, partly from the sheer pleasure of being scared half to death!

Waiting for a car to go home put a damper on the day, but it gave us our one uber horror story, so... We've been using uber with pretty much no problems, however everyone had called for a car at the same time that night, and our driver evidently had no idea how to pick up at the rodeo. He spent 90 minutes sitting in traffic and driving in circles around us, and when he finally got within a couple blocks of us, he cancelled on us. The next car only took 10 minutes to get to us, but by then Mark was in tears, he was so exhausted and frustrated. The kids seem to have gotten over that, though, and speak of the day fondly already.

Yesterday, I managed to mess up our schedule, not realizing that if his counts were low on Friday, we have to have labs run and back before they can start his chemo, because if his counts don't come back up, everything goes into a holding pattern until they do. Usually they do the labs right before or after chemo, so when I saw that they had not yet scheduled his chemo Sunday night, but they had scheduled him for labs at 8 in the morning, which would be too early to do his chemo (there can only be 1-4 hours between chemo and radiation), I just skipped it, figuring it would have to be fit in later with the chemo when they got themselves together. Instead, we had to wait for the labs to be run once we got there, so we ended up in the "chair room" (it's literally a room with chairs where the kids sit to get their chemo when they don't have to be there long enough to need a bed - they're comfy chairs) for hours, and his radiation had to be switched from 1:30 to 5. It did give us a nice break in the middle of the day though. We went back to the house, Bella and I went outside for awhile, and Jim and Mark played Super Mario Bros on the Wii.

Today Mark woke up super tired. He is still experiencing numbness in his fingertips, in fact it's spreading a bit, and yesterday his foot was burning. He has had a few stumbles while walking, but I'm not sure if that's a result of his fatigue or if he's starting to lose feeling in his toes and he's just not aware of it yet. His hair has also started to fall out. You can't tell yet, but he can pull out little clumps at a time.

Other than that, he's doing well. Thank you all for the letters, packages, prayers, thoughts and good wishes. I'd like to say we'll get individual thank you cards to everyone, but if we don't, please know we are very, very grateful.

Love and blessings from Houston,
Wendi, Mark, Bella, and Jim

Thursday, March 19, 2015

Another Facebook Post Roundup

The WiFi where Wendi is staying is problematic and inconsistent, which complicates efforts to make formal updates to this blog as good internet is spotty when using the laptop.  However, when she is out and about, waiting on Mark at various appointments, it is much easier to post brief updates to Facebook from her phone.  This is why updates to here are less common as we'd like, and collections of Facebook posts are moved over here from time to time.  Thanks for your understanding.  - Frank


March 16 - 9:47AM
Feeling good today. Cereal, ramen and a pickle for breakfast. He even drank some milk. And no wheelchair!

March 16 - 11:01PM
Snuck out for coffee and dessert with a lovely new friend here in Houston. She directs the local CC Foundations/Essentials program and gets Jim to Challenge each week. I babbled incessantly, but she sweetly listened to all of it and even took me to run errands afterward. Then she prayed over me when we got home. What a blessing to be part of the CC family, and to have sisters in the Lord.

March 17 - 10:20AM
Just dropped Bella off at Spring break camp here at the hospital. 10-3, all week long. She's thrilled, and the rest of us are feeling very blessed and relaxed right now!

March 17 - 11:53PM
First off, Mark got an amazing gift today from Frank's coworkers at Clark Public Utilities. It got him outside and smiling and laughing. It was awesome.  See the video links below:

First time out of the box:

First time outside:

Thank you so much guys!!!!  Also, thank you to everyone who has sent cards, care packages, love , prayers, etc.

As far as treatment: Mark is struggling, but he's making it through. His oncologists were genuinely concerned and disappointed this morning, because of all the side effects he's already struggling with. They put him on four new medicines today, plus they added an hour of IV fluids after chemo each day. The fluids really seemed to help. He's already experiencing numbness in his fingers, so he's on something to help prevent nerve damage. New pain med prescription for before radiation, a med to help with nausea, a med to help with appetite, a med to help with nausea and appetite (and anxiety) - he's lost 4 lbs in the last week - and a med to help prevent pneumonia. Plus we're trying to do daily Epsom salt baths, vitamin D3 and melatonin. Hopefully we'll find him a happier place to proceed in. If nothing else, he may just sleep through the rest of treatment, since every med says "may cause drowsiness".

Oh, and I got to have Cajun crawfish for supper and I made a new friend tonight.  Goodnight all. God bless!

March 18 - 7:59PM
"Dr. Who Risk" from Mark's godparents. Thank you Chris and Liz! And look who's feeling better!!!!!! With the new meds he says he feels almost normal. Thank you all so much for your prayers! (see picture below)

March 18 - 11:34PM
Final post of the night, it's about Bella. She is doing much better at this, and although she still misses home, she us starting to be herself again. Tonight she and I had some one-on-one time. We went for a nighttime walk, something wet don't do much in the country. She road a little bike and I walked/ran along beside her.

Next door to RMH is a hospice home. Bella asked what it was tonight as we passed by. I explained that it was a place where people go when they know they will die soon and there is nothing more that can be done, that there they try to help them and their families be comfortable as they are dying. I commented that we should pray for them from now on whenever we pass by. So as she pedaled past she prayed aloud, "Please Lord help all the people in there who are dying to come be with you when they die".

We then continued on to the gardens by the hospital which are beautiful and smell lovely at night. The picture of Bella by the water is her praying again. She saw the water, jumped off her bike, and knelt down on the edge. After she got up she said, "Mommy, I was praying . I prayed for Mark and his cancer, and I asked if all of those people could live a little longer." (see picture below)

On the way back, she prayed as we passed the hospice again for them to all live another day. Sweet girl, with a sweet heart. I am so blessed to have her on loan from the Lord.

March 19 - 12:59PM
Look, it's Mark eating lunch! First time he's wanted lunch since we started treatment! (see picture below)

Monday, March 16, 2015

A Good Day

(originally posted by Wendi)

It has been a good day.

Mark, with the break from treatment, has been feeling better. The nausea and GI discomfort that has plagued him all week subsided to still background noise. The Megase has increased his appetite, but not his choice of what to eat - it's like being in the picture book "The Seven Silly Eaters". Popcorn, pickles (5 calories each and no fat, really??), and occasional spoonfuls of ice cream. He's drinking, both water and Gatorade. The pain in his throat has lessened, and his head isn't hurting. And his fatigue has lessened (aided by numerous naps over the weekend).

I had forgotten to mention last week that he has been traveling by wheelchair since Tuesday. He can get on and off the shuttles and make it from bed to the bathroom and back, but he's been so exhausted, he doesn't feel like he can do much else. He says his legs feel tired and weak. I think he may be a bit unsteady on them as well. Also, he hasn't wanted to leave the room while we're at the house, for various reasons.

But today, I put him in the wheelchair and wheeled him outside. We walked around the playground, shot some hoops, and played catch with Bella. I didn't get a picture, but the moments are etched on my heart as he laughed and smiled, fully enjoying the day. Then we walked around the block, me pushing his wheelchair, Bella on a tiny bike, and took in the flowers and birds, talked about the bayou that the trail ran along, and allowed the sun to shine down upon him, something he won't be able to enjoy for much longer, at least not with his head and arms bare like that.

It has been a good day. I know he and I both went to bed thankful for the break, and yet dreading the return of treatments tomorrow. I pray that this week will be easier on him, and that we will hold the good days close and let the others fall by the way.
God bless, and we love you all.

Saturday, March 14, 2015

A narrative by Wendi

Copied (with permission) from a text message.


And it's great here, it's just the room is on the second floor (1st floor is huge, tall atrium style ceilings), but everything is downstairs. Ice, drinking water, food, laundry. So I go downstairs to get ice water and a cup of ice for Mark. Come back up, Bella wants some now. Back down. Partway down realize there was medicine in the room that needs to go down to the fridge. Get the water, back upstairs. Mark wants a pickle now. Go down to find pickles, remember I need to switch laundry (that I started at 5:30 this morning) because if you leave it too long they'll page you. Put one load in the basket. The other load will require a second trip. Go looking through the fridge for pickles. Find some, grab a plate and fork, walk to the dining room to have table space to get a pickle out. Go put them back away. Realize can't take the pickle and the laundry up together, so take pickle up. Head back down to get laundry, realize I still haven't grabbed the medicine to take downstairs. Get the laundry again and notice the buffet breakfast is almost gone, so put laundry down and grab some eggs. Set them with Jim who is eating so we can trade out. Get back upstairs. Mark likes the pickles and wants more. And Bella would like some pancakes. Dump the laundry on the bed. Head back downstairs, finally remembering the medicine. Dispatch Jim to get pancakes and take them to Bella. Go get the rest of the laundry in the basket, but it's too heavy, plus I'll have pickles again.  Leave it in the laundry room for Jim to get. Go get pickles (fridge, dining room, back again). Notice that while Jim and I have been gone someone cleaned our table and threw away my eggs. Take pickles upstairs. Find Bella in bed, not eating pancakes, not hungry anymore. Head back down to get new eggs. Sit and eat eggs. And each trip involves dialogue and questions and how are you and "Mommy look at this, look at this, look at this".

Friday, March 13, 2015

Urgent Prayer Request

Wendi posted this to Facebook a few hours ago.


Urgent prayer request: Mark's throat has been hurting since Wednesday morning. It had been getting progressively worse, and that combined with the nausea has made it even harder than usual for him to eat.

He has had one ramen cup each day, a handful of strawberries yesterday morning and popsicles. Today he has had two popsicles, one this morning, one tonight, and half a cup of tea with honey, in addition to water (not nearly enough).

We've tried throat drops, chloroseptic, Tylenol, ice. They are finally calling in a prescription to numb his throat, but it won't be ready until tomorrow morning.

Their advice is to use the oxycodone we have, but I only have two left, and they each last 4 hours.

To put this pain in perspective, after surgeries his pain number never went above a 3. When we first went into the ER with the hydrocephelous, his pain was at a 7. This he is calling a 5.

The pediatric nurse I spoke with said it's because the cells in the mucous lining in his throat are being killed off.

Please pray for a peaceful rest and pain relief through the night and that the medicine will work quickly and help him to eat again.

Thank you all. God bless.

Thursday, March 12, 2015

Quick Update

Wendi posted this to her Facebook page yesterday.  She has been very tired, overextended, and is recovering from illness while dealing with being far from home.  I know many of you do not use Facebook and don't necessarily catch updates there even if you do, so we will try to do better at keeping this page updated, thanks for your patience.


First chemo treatment.
Mark ended up vomiting once that first night. Nauseated and discouraged yesterday morning. They put him on Zofran round the clock starting asap in the am. That brightened him up. He was awesome through chemo and radiation. Half hour after we got home he said he didn't feel good and laid down (4ish). Began vomiting and continued until around 7 or 8 when he took melatonin and he fell asleep. Fine all night. Nauseated in the am again. Met with psych which was tough for him. Getting discouraged and frustrated. Asked how many more days and when I told him he started to lose it. Later, began dry heaving during chemo, so they put a rush in for benadryl to layer over his zofran (it works as an anti-nausea med). Helped but made him exhausted so he got a wheelchair for the rest of the afternoon. Evidently began having trouble breathing through his nose during radiation and he had some tears, but he brightened up when that was done. Bella and I went to the store and brought him back his favorite ramen bowl. He ate half of it at 5pm,( first food since yesterday lunch), played some Wii, then headed up to lie down by 6. Was out by 7 but no vomiting tonight. Love you all, good night!

Monday, March 9, 2015

Official Day One

(originally posted by Wendi)

I'm exhausted, and should be sleeping, but there are certain things I have to record tonight or I'll forget...
  • Like how we waited for his lab work and chemo for over an hour in a room full of families that were all there but wished they didn't need to be.
  • how after his chemo his ankles started itching
  • how I was so tired I almost fell asleep several times during the day
  • how Smoothie King high protein smoothies are nasty
  • how the mask didn't fit right at first in proton, but the people there are sweet and amazing
  • how when the nurse took me back to the waiting room since I can't stay for the treatment, she commented that Mark was going to make their job fun
  • how Mark was on the table for almost an hour and a half. He got to listen to Newsboys the whole time (per his request).
  • how his nurse said, when I came back to get him, "some people say the radiation machine smells like bleach or something burning. Mark says it smells like iron residue". She was tickled.
  • how Mark described that as the treatment went on, his chin got more and more sore until it felt like he'd been "chewing bubble gum for five hours" and the back of his head where his stitches are still healing felt "like a skinned knee". Good thing I gave him that oxycodon first.
  • how on our way back to Main to pick up the prescription for Zofran that I knew we would need if we didn't have it, an elderly woman and her friend got on at the normal radiation center. She was using a cane and had trouble getting up the steps, but the two of them were so full of joy, you'd think they were getting on a cruise. What an inspiration.
  • how I kept asking him how he,was doing and he kept saying fine, other than a little tired.
  • how during dinner, almost mid bite into a piece of chicken he had only moments before declared amazing, he looked up at me and said "Oh. Suddenly I don't feel so good"
  • how an hour later, with the zofran in his tummy, lying in his bed and still feeling miserable, he said to me "if this is how I'm going to feel everyday after radiation for the next six weeks, it's going to be a lot harder to take."
  • and finally, my favorite moment of the day as we sat outside waiting for the shuttle to come and bring us home, people pushing and bustling back and forth, Mark said "sitting here in front of MD Anderson like this makes me think of that song (and he began to sing)

All those people going somewhere, why have I never cared
Give me your eyes for just one second
Give me your eyes so I can see,
Everything that I keep missing,
Give me your love for humanity.
Give me your arms for the broken-hearted
The ones that are far beyond my reach.
Give me Your heart for the ones forgotten.
Give me Your eyes so I can see.

Amen, Mark. And good night my friends. May God bless you with His joy, now and always.

Thursday, March 5, 2015

facebook roundup

(originally posted by Wendi)

First off, due to the generosity of so, so many people, we are covered in the transportation front. Thank you all for your generosity. As always it overwhelms us.

Second, for those of you who do not have Facebook, here is a collection of my posts from the last week (if you have Facebook, there is nothing new here, sorry):

Feb. 26th
I've been asked by a few people how to get in touch with us. Here is the address:
Mark Billington
1907 Holcombe Blvd.
Room 10
Houston, TX 77030

Feb. 27th
So, today is 31 days since Mark's surgery. Treatment should have started today, but Monday was close enough, considering all of the travel and logistics. We made sure all of the insurance stuff was done before we left WA. At least, with oncology. Got a call from Proton Therapy today that they were canceling Mark's treatment on Monday because they hadn't heard from insurance. What?! I personally saw the paperwork on Monday. In oncology. Come to find out Proton Therapy didn't put the request in to our insurance for pre-authorization until the middle of this week, and to our insurance it looked like"could you get to this sometime in the next few weeks?". Frank spends the afternoon on the phone, leaving the ball in Proton's court - all they have to do is tell insurance now that it's a rush authorization. And suddenly our appointments reappear on our portal. All is well, I tell him, so we let it be. 15 minutes after the business office closes here, I get another call from proton therapy: we're sorry, but we haven't received the authorization from your insurance yet, so we are canceling your appointments on Monday. Really? Now that it's too late to call them and figure out if they sent in the rush order? Sigh. I know it's all in God's hands (for those of you who thought I'd forgotten and were going to remind me - lol) but sometimes it is still frustrating!

Mar. 2nd
Quick update: still waiting on insurance. We are currently waiting to see the Endocrinologist, which is on the oncology (i.e. cleared by insurance side of things). Proton therapy felt that it should all be straightened out by this afternoon, however the business office closes in 1hr, and we haven't heard, so we'll see. Spent the day working on school and resting. I have been very, very tired the last few days, so napping in the afternoon has been a must for me. Once Mark's appointments start, that will not be an option, so I'm taking advantage :).

Mar. 3rd, 10:07 AM
The insurance finally came through!!!! We're waiting now for Mark's port to be accessed for the first time. Then labs, oncology appt., chemo, and radiation. It'll be a long day, but it's one step closer to being done and going home :).

Mar. 3rd, 11:40AM
May have spoken too soon. It's out of network, so it got bumped to a different person on this side so that it can be approved again. Sigh. They changed our proton appointment until 6pm, though, so I think they're hopeful it will get resolved today. And that means we get to go home for lunch.

Mar. 4th, 12:39AM
So...the CFO at proton therapy decided that he'd. Never heard of our insurance, therefore there needs to be a contract in place before we proceed. So they sent the contract to our insurance. Around 2 they called to explain the situation and ask if there was any way we could call our case manager at insurance and encourage them to move it along. Frank called and got voicemail. Called again later, case managers voicemail again, but the customer service rep said he could see it "in the queue". Getting used to just waiting. It is all in God's hands anyway. We are going to head in to Challenge with Jim tomorrow so we can meet his class, then head home and do school/wait. I've heard some "horror stories" of what this can mean: treatment delayed for weeks, huge amounts of money required up front. Again, thank you all for your prayers. During this I have met some beautiful women who are mentoring me in the process, so even in that I can see God's hand. His grace is abundant.

Mar 5, 12:09AM
One possible "reason" for God's timing in all of this was made apparent today: Jim had his Challenge II class today. Since we had no appointments for the day we drove him over so we could check out his new class. About five minutes into the first subject of the day, Bella says she feels like she's going to be sick. She managed to throw up in the hallway and another classroom before I found an empty trashcan for her to finish up in. After cleaning up all the messes, emptying the trash cans, and grabbing a bag for the road, we jumped in the car for the thirty minute drive back to RMH. She used her bag well, and since we've gotten home this morning, she has continued to expel everything that goes into her little body, even ice. I've been feeling a bit off as well, and have spent most of the day napping with her or on the phone with proton and insurance attempting to get everyone to speak the same language. Final on that front is it might still be up to three more days before he can start treatment. Everyone says their hands are tied.

That being said, with Jim gone all day (he ended up hanging out with one of the CC families and going to church with them for the evening) attempting to fit in proton and chemo would have been close to impossible. So we will continue to wait on God's timing. Love you all!