Tuesday, April 28, 2015

What I didn't expect...

(originally posted by Wendi)

Last Friday night, Mark and I got on an airplane in Houston, heading for a brief layover in Denver, and then continuing home. It was an uneventful set of flights, and we touched down a bit late, but safely, around 12:30 AM Saturday morning.  It has been good to be home, and things have picked up again, almost as if we were never gone, but there have been a few things which I didn't expect.

I didn't expect to feel claustrophobic on the roads. 
We live in the country, 6 miles of curvy two lane road out of town. The trees and brush grow right up to the road in parts; in other places, cliffs adorn one side. Most of it runs along a beautiful river. I have always loved the drive along this road. This time, however, it scared me. Even with my husband driving 20 miles an hour slower than usual, it still scared me. After two months spent on the wide open roads of Houston, our little forest road was terrifying.

I didn't expect to have forgotten so much about my home.
I was surprised to walk into my house and find that I had forgotten how it looked. It was almost like visiting someone else's home after a move. The items looked familiar, and were even in familiar places, vaguely. But many things seemed completely new - mostly things we had changed after Mark's diagnosis. The desk that had been my husband's grandfather's, which we had received in early January, topped with pictures frames I had compulsively filled with pictures before Mark's tumor surgery, in order to have something to remind me of him in case he didn't make it through. The playpen in the living room belonging to my grandson who was born one week before that same surgery. There were other things I had forgotten as well. I needed to leave early in the morning, and so I began to lay out clothes for the next day (as I had in Houston each night), looking through my bags for a specific outfit. I became increasingly frustrated over the next 20 minutes as I could not find what I was looking for, until I decided to give up and just wear the pants I had worn that day. I grabbed my pajamas out of one of the bags and headed into my closet to change. I was very surprised to see clothing in there. I had a complete wardrobe waiting for me - all of the clothes I had not taken with me to Houston. I had forgotten that they existed.

I didn't expect home to be easy.
I had expected to be overwhelmed by stepping back into my "normal" life. By the end, RMH and Houston had become easy and comfortable. Chores every night. Dishes hand washed or in the dish washer as soon as you're done eating. Most meals provided. Appointments every day. Stairs to go up and down to get to anything. People to stop and speak with each time I left the room. These things had become second nature. I was afraid that taking care of my home and my children, teaching, fixing meals, managing schedules, cleaning and increased amounts of laundry - all of these things seemed overwhelming as I headed home. However, as I woke up Monday morning (the weekend was filled with traveling on Saturday and visiting on Sunday), all of the things I learned while in Houston combined with all of the things I've always done, and the morning passed by easily and efficiently. The afternoon and evening were the same. Today, my second day into "home" life again, has proceeded much the same. The habits I gained have been helpful. And here there are no stairs to climb to get to everything, nor are there daily appointments at this time. I have been blessed to step back into my life with ease - a blessing, I believe, from God.

I didn't expect to cause worry and frustration with my presence.
I hoped my children would be thrilled I was home. They were, and it is wonderful to all be together again. However, at moments, my efforts to be "wanted" have backfired. I began Monday with a cleaning spree. Most of it was out of habit, but some of it, deep down, was because I hoped my children would look around and think "wow. This is awesome. I'm so glad Mom is back." Isn't it interesting how differently things seem from different perspectives. My attempt to earn my children's appreciation came across as disapproval for the work that was done in my absence. I was only thinking about my emotions and my need to be validated; I completely ignored the identical needs of my children. I also had missed my grandson. He was only one month old when I left, and I wanted to prove that I'm a good grandma, plus I'd missed him. This has resulted in my taking the baby frequently. My daughter has been happy to allow this, but last night she confided that she was worried that at some point the baby may decide he likes me better. My efforts to win smiles and cause giggles had briefly unsettled my sweet daughter who is an amazing mommy. Trying to fit all our lives back together again has been harder than expected.

I didn't expect Mark to have such a hard time transitioning home.
Mark had missed home a lot. I thought it would be a relief to him to be in familiar surroundings with his family. Home, however, can be loud and busy after the relative quiet of our room at RMH. Plus, it comes with increased expectations. Family meals, daily chores, school, screen time restrictions: all these things hold a permanent place in our home. I was rather lax with Mark as far as expectations go during chemo/radiation, but now that we are home, he is expected to do as much as possible each day. His siblings have wants and needs that are not always compatible with his desires. Many people living together requires patience and compromise. His younger siblings still act like small children (which they happen to be). Mark has found all of this to be frustrating.

Often times our expectations differ from reality, sometimes good, sometimes bad. Living with cancer is living with a life full of things that differ from our expectations.

This journey is constantly teaching me that we may think we know what is coming, but we only really know what we expect. Tomorrow, next month, next year - they will likely all be full of surprises, full of things we didn't expect.

Friday, April 17, 2015

The last day of "treatment - part one" in pictures and video

(originally posted by Wendi)

This is Tiffany from the front desk at chemo. She greeted us every day with a smile!

Deborah from the front desk at Proton Therapy. She has a tough job. They keep her hopping.

Some of our Proton staff. Travis and Ann are missing, but these guys were great, especially Stephanie, who is on the floor between Mark and Bella. She helped us out so many times.

We asked Mark if he'd like to do donuts or flowers as a going away gift for the staff. This is what he chose, and it was greatly appreciated by everyone :).

These are the wonderful nurses at chemo. They took good care of us.

Monday, April 13, 2015

On continuing on and Bella

(originally posted by Wendi)

Sorry that there was no weekend update. We were pretty tired going into the weekend and the Wi-Fi was pretty spotty. Right now we are at MDA waiting for the results of Mark's morning labs. He started out the weekend neutropenic (low WBC), which meant shots all weekend done at home by me. I never thought I could do it, but it's becoming easy, although Mark always comments that it's ok if I hurt him because I'm not a professional. I always think I've done well, but I'm not the one getting poked.

He spent a lot of this weekend sleeping. He has seemed very fatigued. Yesterday morning we went to the store and to grab breakfast. He never left the car, just sat as we drove around. After our hour long excursion, he was exhausted and took a four hour nap. I wouldn't be surprised if when his labs come back today, they show that he's at least a bit anemic.

The big news is this is Mark's last week! As long as nothing comes up, Friday will be his last day of this first round of treatment. Then we'll spend an extra week here recouping before jumping on a plane to head home. We're so excited, and Mark is spending a considerable amount of time plotting what he'll be doing with his friends once we're home.

Other big news is that Frank flies in tonight!!!! I'm so excited for him to meet everyone and have a chance to share in what life is like here. He will stay for one week, then take Bella home with him, so we'll come home in stages: first he and Bella, then Mark and I, then the following week, Jim (he is staying to finish off the school year with his Challenge II class).

Bella will be dearly missed when she leaves. After a bumpy start in which she tried to act like a baby, she has taken up the roll of benevolent older playmate to the younger children. Several children come into the main room of the house calling her name, afraid she may be elsewhere. Last week, as she was playing outside with one little boy (Asher), our friend Emily went running outside yelling her name. Her mom commented that she had been worried that Bella might be heading inside soon and that she might miss her. A short while later, I noticed Asher sitting on his mom's lap instead of playing, so I went out to check on them. "What's wrong?", I asked. "He thinks Bella doesn't like him anymore", she said, smiling. Bella was on the playground playing with Emily, so I went and told her what Asher had said. She slid down the slide and put her head on her hand, smiling slightly. I worried that this might be a sign of some mischief she had played on him, so I asked if she had done something to him. "No, mom," she said reading my mind, "I'm trying to think of what I can give him to cheer him up." She remembered an Easter basket full of presents she had been given earlier in the day, rushed into the house to grab it, and presented it to him. "Here, Asher. It's for you! Let's play with it all together. The playground can be our house." With both young children happily in tow, she headed back to play.

This is not an isolated instance. If happens daily and has endeared her to many at the House. One dad told me that the first time he met Bella was when she approached him with something she and I had made and gave it to him as a gift. He was worried she might later change her mind, so he left it in the main room. "I feel bad, " he said. "Now I know I should have taken it. It's just who she is, always giving." This is why I brought her, because there was something in her I hoped would be cultivated by this experience, and that is exactly what's happened. One of my friends lamented, "I'm going to have to start preparing my child now for her departure. He was upset today when she went to take a nap. I don't know what he'll do when she's gone." I'm so thankful for the blessing this has been for Bella and her new friends, even in the midst of this tragedy.

That's all for now; thank you all for your continued support and for continuing to walk this journey with us.

God bless,

Tuesday, April 7, 2015


Wendi posted this to Facebook on Monday night.


Wendi, Emily and Gabriella
Thank you all for your continued prayers. Tonight I have another prayer request. There is a little girl here who just turned three last week (she shares Jim's birthday). She is here with her mom and dad. She has a little brother who is 10 months old who is at home -they go home every weekend to visit him.

I knew she had a tumor in her brainstem, but her mom had said it was non-cancerous and a grade II, so I had assumed the prognosis was hopeful. She is a little doll, and she has taken to Bella and I, evidently asking for me repeatedly during the day when we're not "home" (we were gone from 8am to 7 pm today).

Tonight I learned from her mom that she has what's called a Diffuse Intrinsic Pontine Glioma, DIPG for short, and although they are here going through radiation, the average prognosis is 6 months to a year. We were talking about how hard it is to look at our children, who seem perfectly healthy on the outside (this little girl is in the same week of treatment as Mark and hasn't lost any hair), laughing and playing, and yet they are seriously ill. We talked about all of the things I wrote about last night. We talked about our worries and how when she spoke to Make a Wish about their Disney trip, she'd been told that the foundation understood from the doctors that this is a rush situation so the turnaround time will be fast.
Emily and Gabriella, in one of the movie lounges at Holcombe House

What does that even mean, she asked, when an organization like Make a Wish says it's a rush. How can that be? I'm so sad for them, well as sad as I can be right now. I can't imagine. And at the same time she started crying for me because I'm so far from my family. And this is how we help carry each other through: we carry a piece of each other's pain with us.

Please pray for them. The little girl's name is Emily.

Monday, April 6, 2015


(originally posted by Wendi)

Today is an update on Mark. After all, he's why we're here, right :).

So Friday was his last day of full cranio-spinal radiation. Now he will have two weeks of radiation on just the tumor, along with his usual doses of chemo. This means shorter radiation appointments with more scheduling flexibility. Which is good, since they had scheduled his chemo right on top of his radiation (I swear, am I the only one that reads both schedules!) and we have been at the chemo place (PATC) for 2.5 hours waiting to find out if they are going to give him chemo today or not. For a short time they had decided to just give him the vincristine (his once a week chemo) and neupogen today and tomorrow. The other chemo is Carboplatin, which is supposed to make the proton radiation work more effectively, but there are evidently concerns about giving it when his counts are low. However it's now been decided that they will give both after all, along with the neupogen shot, and hope that is enough to bring his counts up (so far that's always worked). I could have told them Friday that his counts would be low today, just by looking at the patterns in his blood tests, but nope, I said nothing, and now we're hanging out in the chair room. At least it's comfy here :).

In other news, he's feeling pretty good right now. He has all his meds in him, but no chemo or radiation since Friday, and this makes for an almost back to normal Mark. I've attached a video to prove it. I hope it makes you smile. God bless your Monday!

Sunday, April 5, 2015

Comfortably Numb

(originally posted by Wendi)

Frank has been strongly encouraging me to write a new post here, and I have been finding it difficult. I hope you will all forgive me. Our days are often filled with appointments where little things go well and little things go wrong and by the end of the day all we do is eat, clean, and sleep. And talk to other parents. And hope Bella doesn't get in trouble while I'm doing something else. And make sure Mark takes all his medicines. And check out Facebook. And play candy crush when it's late and I can't sleep.

There really is no excuse.

Except that I am numb.

I didn't quite realize it until today, but it makes sense. It is why I can keep moving forward. It is why I can hear about the bills that are stacking up and the struggles of our fire department that are making it unsure where we will be living, and just shrug. It is why I know the names of most of the children receiving care here, and can ask each day how they're doing and can be present to them in that moment, but then walk away to do what needs to be done without taking all of the pain with me. It is why I don't become completely incapacitated being this far from home without the rest of my family. It is why I can watch Mark's hair fall out a little at a time until he's almost bald, reminding me every time I look at him that the things we are doing to him are harsh and hurting him in ways that we will continue to discover for years to come, but still smile at him every time so that he isn't scared or worried. It is why I can put every ounce of my being into tracking medicines, appointments, side effects, temperatures, even though the world outside continues to turn and other things call for my attention. It is why I can conceal my panic everytime he trips, or forgets something I know he used to know, or struggles to complete a sentence. It is why I can read the posts of other moms who have kids that have gone through this treatment 1, 3, 5, 15 years ago, and hear their struggles and late effects and not just run away with my family to hide in the mountains, far from everyone and everything, and most of all far away from this. This treatment. This cancer. Although the cancer would come with, but perhaps we could pretend for awhile?

So I apologize that I am numb. That I don't post as often as I should. That I don't call my friends or family as often as I should. That my prayer life is flat. That I do not read or study or spend every moment thinking about the very best way to school my children or please God or do any of the other things that would usually come so naturally (obsessively?) for me. I am truly sorry. I'm not even sure that I truly feel like me right now. I'm not sure that I truly feel much of anything. But I am here, and I am able to be strong, and perhaps this is me after all. Just a different me. And this was never meant to sound defensive. I know you all understand. But I haven't. Until now.

Wednesday, April 1, 2015

Facebook Roundup

This week, Grandma Crofford, Grandma Green, and Aunt Cindi all visited!  It was a week with a lot of things going on, with as much fun that could be squeezed in between.  Here are some posts from Wendi and Cindi during the week:


Tuesday March 30
7:32AM - posted by Cindi
Taking my nephew to treatment this morning. Wishing there was no such thing as cancer. But spending the last few days at the Ronald McDonald House has made me see that these kids are just kids. They run around smiling and laughing. They are going through what most adults can't handle and they are smiling and laughing. We all have a lot to learn from these children. A big thank you to all the volunteers at the Ronald McDonald House. They provide food and crafts every day for the kids and their families. We are so thankful for all of the support from everyone. The next time you go to McDonald's give to the Ronald McDonald House. They are worth so much to these children.

Waiting for Mark's labs to return. He's tired, dizzy, and has a cold. Not sure yet what today looks like.

10:26AM - posted by Cindi
Mark is going in for his first blood transfusion this morning. His hemoglobin was really low. We found out that his blood type is O-negative. Which is really rare. It's also universal, which means it can be given to a anyone in an emergency. So when he is older and donates the blood bank will love him! He is pretty tired and dizzy today. This could be from the fun filled day yesterday but more like from the cold he caught and his low hemoglobin. They are packing fluids today. Hoping this will help also. Thanks for all your continued love, prayers and support.

Taking chemo like a champ
Quick update: White blood cell count is good and he's feeling better now that he's had fluids (his heart rate was at 140 when we got here, now it's at 85). His hemoglobin is low, though, so they have to do a transfusion today, but his appointment at Proton Therapy can't be moved because he had such a specialized type of setup. So we're doing chemo then proton then transfusion.

Almost done for the day. The transfusion just finished. In about half an hour we'll head home, and he's on bed rest until tomorrow morning. Been at appointments since 8:30 this morning, but he's feeling better now. Thanks for all the prayers.

Tuesday March 31
Got the results of Mark's neurocognitive testing today (basically IQ testing with motor skills and memory added in - they do this as a baseline when treatment begins and then track him as he grows). The doctor I spoke to, the retiring head of the department here, said Mark scored in the 99th percentile on most of the test (fine motor was an exception, but we think that's due to surgery and chemo), he's extremely bright, and we should start saving now for an ivy league school when he gets older (he said this last part at least twice). Nothing we didn't know, but it's fun to have it confirmed, especially when the doctor sounds so impressed.

At the US Open
event for RMH guests
Wednesday April 1
7:13AM - posted by Cindi
Long day today. Taking my oldest nephew to school. Picking up the rest to take my mom to the airport then back across Houston to go to the PGA event hosted for the kids at the Ronald McDonald House. Then take myself to the airport and go home. I'm sad I'm leaving. I didn't realize how stressful some of these appointments can be. They are so close together that if it wasn't for the rental car Mark would have missed his transfusion. I know this is taking a toll on my sister, even though you would never tell by looking at her. She is always smiling. My sister is an amazing woman. She is definitely worth more then rubies.

3:26PM - posted by Cindi
We had a great time at the US Open today. Mark loves golf so it was really fun for him. He even got his hat and golf ball autographed. It didn't take long before he was worn out and ready to go rest but I know he will remember this day. It's so good to see that beautiful smile in the midst of everything going on in his world.


Gabriella being interviewed
Gabriella was interviewed at the PGA event, by MD Anderson media staff who talked with her about her generous nature, see the picture.  And let us not forget the huge contribution being made by my oldest son helping make everything "go" in Houston.  Tomorrow is his 17th birthday!