Help Find A Cure

Not long ago, Rebecca and I completed our first-ever Olympic distance triathlon. Not only did we complete the race, we also raised $14,000 for the Leukemia and Lymphoma Society. Crossing that finish line was one of the most rewarding experiences of my life.

Now, just two years later, I find myself entering into another endurance race, but with a whole new motivation. Gage, my own son, has leukemia. I’m no longer racing for someone else’s family. I’m also racing for my own.

On December 9, I will run in the Dallas White Rock Half-Marathon as a member of The Leukemia and Lymphoma Society’s Team in Training Program (TNT). Seventy-five percent of every dollar I raise will go to finding a cure for leukemia and other blood related cancers.

Since TNT began in 1988, it has raised over $750 million dollars and the survival rate and patient care has dramatically improved. I have seen the benefit of the money raised first-hand. The port-a-cath that Gage uses to receive much of his medicine is a direct result of the research funded by TNT. It has made a dramatic difference in his care.

Please support TNT and their efforts to find a cure by visiting my fundraising page and making a contribution of $10, 20, 50 or 100. Every bit helps.

http://www.active.com/donate/tntntx/tntntxBHolmes

On the road to a cure . . .

BH

Good Cop, Bad Cop

We’ve all watched enough Law & Order to know what “good cop vs. bad cop” means. In order to coerce the suspect to share what he knows, the “good cop” portrays a friendly persona, and if that doesn’t work, the “bad cop” comes in and plays the role of an enforcer.

Gage has had a difficult time taking his medicine lately, and Rebecca has played the role of “good cop” to help him take it without getting upset. Once Rebecca has tried everything, I am left with the never-envied role of playing “bad cop.” This morning was one of those mornings when he refused to take his medicine. “I need more water,” he protested. “I don’t want it in a pusher” . . . “please say a prayer first” . . . stall, stall, stall . . . on and on it went. Finally, he agreed to take it and then got so upset that he threw it all up. Obviously, he had to take it again, so we started all over. He cried. I got angry, and Rebecca somehow remained composed.

Emotionally, this routine tears me up inside. Gage is tired of being sick, and he doesn’t want any more medicine. (Who can blame him?!?) The fact is, he has to take this medicine. He has no choice. On the outside, I portray a stern demeanor, but on the inside, all I want to do is cry and throw all the medicine away so he won’t have to take it again. I wish it would just all go away too.

Somewhere in here, I realize that the Lord is allowing me to also take a “medicine” that I don’t want. I, too, feel like Gage feels. The process of taking the “medicine” actually makes me feel worse. I wonder, what good is it doing? How is it helping? I pray that, in time, both Gage and I will see some good come out of all this mess.

On the road to a cure . . .

BH

The Bottom Bunk

All I can say is bunk beds, top or bottom, are no place for someone a week away from having a baby! Yet, at 1:00 a.m. last night, I found myself in the bottom bunk as Avery tried to settle back to sleep on the top bunk…all following an outburst by Gage as he woke up crying and not feeling good. Gage spent the rest of the night in my spot with Blake in our room, and I moved into the bottom bunk. I’m sure their night wasn’t easy either, but I know I certainly spent a fair amount of time tossing and turning while trying not to wake Avery.

And at 6:00 a.m., I hear Ellie yelling (her typical morning approach), “I get up Mommy! I get up Mommy!” So, I tumble out of the bunk as fast as I can (I’m sure not very gracefully) and try to get to her before she wakes up the house. This is a daily morning run in our house. Right now, it’s barely 6:30 a.m. and Ellie and Avery are both up watching TV. Avery has also already gotten dressed for school and packed her lunch too. (At least having early risers has its advantages when it comes to getting ready for school.)

And all of this night time craziness follows a day yesterday that was more than eventful too. Gage had an emotional day with me, threw up right as I was trying to leave for my doctor’s appointment…and to top it all off, the exam at the doctor’s office almost sent me into labor. So, as I was driving home from the doctor, I felt like I should just turn around and drive myself to the hospital to have the baby. Wouldn’t that have been one to remember! Instead, I drove home and spent the next 30 minutes with Blake trying to figure out if we should start packing to leave for the hospital or if things were going to calm back down. Thankfully, things did calm back down, and we’re still at home.

I’m certainly ready to have the baby, but I’m sick of “fire drills” and the emotional toll they take on everyone. As I rested yesterday afternoon on doctor’s orders, both Avery and Gage seemed worried about what was happening and told me that they didn’t want me to go to the hospital. As you can imagine, neither associates very good things with the hospital right now…and they certainly don’t want us leaving either.

Please pray for our family right now…that we would have at least a few restful nights before the baby comes, that Gage would have less emotional days and feel better and that the baby would come in a way that wouldn’t take everyone by surprise. We’ve had enough medical surprises lately, and I hate for this to unnecessarily upset the kids. I’m scheduled to be induced on Sept. 7th, and it would be nice if something could actually go that smoothly and predictably.

Please pray for rest, hope and comfort for us.

Psalm 119:28

My soul is weary with sorrow; strengthen me according to your word.

RH

More Like A Stranger

It has been a while since my last post. The words are harder for me to find. Life has become more busy with Avery going back to school, Rebecca and I getting ready for the baby to come and my going back to work every day. And, fortunately, Gage is more active, so there is less time to reflect and write.

Yet, another reason why I have been less inclined to write is that, underneath all the activity and transition, my heart has grown numb. Each day I navigate through Gage’s poor health, Avery’s emotions, Ellie’s energy, Rebecca’s fatigue and my own stress and fears. My heart has learned not to rise with each new sign of progress or fall with each report of bad news. Instead, if I feel anything, it is a sense of determination to lead and protect my family through this season of sorrow and disappointment.

Regretfully, with a heart that has grown numb, I feel like the Lord has become more like a stranger than a father to me. Yes, intellectually, I know He is with me, and I am familiar with the promises of Scripture that speak of His presence and protection through trials. But, emotionally, my heart just isn’t there. I don’t know how to reconcile what I know to be true with my daily experience. The reality is, I may never be able to do so. All I can do is trust in the Lord. I guess that is why they call it faith.

On the road to a cure . . .

BH

“All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth.” (Hebrews 11:13)

Big Day

Well, I’m happy to report that our big day today went pretty smoothly. A quick update…

* Avery had a great morning at home before school, a drop-off that was a little emotional and teary, but pretty good all things considered…and then a great day! Yeah! In her words, the day was “better than fantastic, better than awesome!” She did wear a Team in Training wristband with Gage’s name on it (a charity of the Leukemia & Lymphoma Society). She said that when she got sad and missed us, she just looked at her wristband, and it made her feel better. So sweet.

* Gage had a short day at clinic due to the fact that his blood counts are too low right now for us to begin the next round of treatment. So, it was an easier day for him at the clinic, although he physically doesn’t feel as well right now because of the war that’s going on inside his body. As Blake said, “I look at him and he seems to be doing okay…and then we see his blood work results, and I’m reminded all over again how sick he really is.” Even though the low blood counts are a result of the chemotherapy and not surprising to the doctors, we’re always reminded that we really don’t know what each day will hold. Hopefully, his blood counts will come up, and we’ll be able to start the next round of treatment next week. Please pray that he doesn’t get sick during this time, as his low blood counts mean he truly has no immune system.

* And, even though Monday is typically “doctor day,” I didn’t have my afternoon appointment so that I would be able to pick Avery up from school. So, no news there…just ready to not be pregnant much longer!

Thanks for continuing to keep up with our family during such a busy time for so many of you too.

RH

(Gage helped Avery decorate her locker before the day started.)

Every time

Well, it’s Sunday night, and as I (Rebecca) think about the week ahead and the week we just finished, I wanted to take a moment to give a brief update on how we’re all doing. Blake and I are always so encouraged by all of you who are keeping up with our family right now and praying for us.

As you can tell, we’re updating the blog less frequently because the days are falling into more of a pattern, and there is less to say sometimes from day to day. The hard issues are certainly still there, but they seem to be issues that are going to be around a while. In other words, many of the prayer requests remain the same.

A friend asked Blake the other day how often during the day we think about Gage’s health. As I am with him almost around the clock right now, my immediate answer to Blake as he relayed the conversation was, “Every time I look at him.” I keep wishing for thicker skin or more routine, but I’m realizing more each day that there is no skin thick enough to keep me from feeling how difficult all this is.

All day and in many circumstances, I watch Gage and see how the leukemia affects him…when only Blake & I realize that he needs help getting up a simple step because he doesn’t want to ask the person nearest to him, when a child innocently comments about his “buzz cut” and lack of hair, when I see him play outside with his shirt off and see his port-o-cath under his skin (such a visible reminder of his chemotherapy), when I have to decide how to discipline him during the day without really knowing how he feels physically and emotionally, when I see him get upset and frustrated that his body still doesn’t work the same way and he can’t do so many things that he used to do.

It’s nice that Gage feels well enough right now to get out of the house and interact with other families and kids, but it’s so hard for me to watch him be so vunerable and different in the midst of the other kids. All that goes through my mind when I watch him is, “My child has cancer.” Thankfully, he seems able most of the time to focus on the positive of what he can do…go down a step by himself for the “first” time, ride his razor scooter again (although a bit more slowly), enjoy a waterslide at a friend’s birthday party (although with help getting on & off each time), etc. He’s been amazingly tough and resilient in the midst of all of this.

Please continue to pray for our family this week:

* that Gage would have minimal side effects from the 5 days of steroids that we re-introduce this week (this drug has caused much of our muscle/mobility issues) and that clinic would go smoothly (and quickly!) tomorrow

* that Gage would be able to take his medicines daily without incident and protest

* that I would have wisdom to know how to interact with Gage throughout the day, balancing compassion with discipline in the midst of his emotional days

* that I would have the energy to love each person in our family well throughout each day, even though I’m feeling more and more depleted by my pregnancy

* that Avery (and the rest of us) would adapt well to the routine that comes along with school starting tomorrow morning; that she would enjoy the kids in her class, have the energy she needs for each day and still have enough energy to enjoy being home at the end of each day

* that Blake and I would continue to talk through and understand how all of this is affecting us personally, emotionally, physically, spiritually, etch. It’s hard to have the energy to go beyond just getting through each day, but I want to be more than just a shell of myself through all this.

Psalm 142:3

When my spirit grows faint within me, it is you who know my way.

Thank you so much for your prayers and encouragement.

(One sidenote from tonight, especially for those of you who haven’t experienced Gage’s kind and generous spirit first-hand: Tonight Gage whispered to Mimi (Blake’s mom) the following, “Mimi, you know how when I was in the hospital, I got so many gifts and people didn’t always bring something for Avery too?  Maybe tomorrow would be a good day to get a toy just for her since it’s her first day of school.” Thoughtfulness that would challenge even the most giving adult…)

RH

Playing Doctor (by Rebecca)

Well, when you think of little kids playing, pretending to be a “doctor” is always a favorite. In our house these days, playing “doctor” is pretty realistic. Here are some snip-its of the kids’ conversation from the last week:

“This doll is sick and needs to go to the clinic…this one threw up her medicine and has to take it all over again…here’s the medicine for your leukemia—it will help get rid of your bad blood…”

I also hear Gage initiate very interesting conversations these days with kids and adults alike…”Do you ever go to Children’s? I go there on Mondays for clinic.” or “I can’t share food with Avery because of my leukemia.”…and much more.

Although I hate all of it for him, it’s still good to see he and Avery, in particular, getting used to this new part of our lives and figuring out how to accept it as part of our “new normal.” As school is about to start, our kids are about to be around many of your kids much more often, and some of you have asked me how we’ve described to them what’s been happening with Gage. So, I thought I’d take a moment and answer the question on the blog for anyone who’s interested…

For starters, we use all the grown-up words with them: leukemia, cancer, chemotherapy, immune system, side-effects, etc. As the doctors told us from the beginning, the words don’t have the same emotional impact to a child, and Gage especially will hear them often from his doctors, so it’s important to hear them from us as well.

We’ve basically explained that Gage’s blood is sick: the bad blood was fighting with the good blood and that’s why he wasn’t feeling well. As he takes his medicines and goes to clinic each week, it gives the good blood ammunition to fight the bad blood so he can feel better and get stronger. However, because his body is so busy fighting the bad blood, it needs help with some other things…like fighting germs. We need to help his immune system (germ fighters) by taking additional medicines too and being very careful about washing hands, not eating other people’s food, etc. He knows that his leukemia is not contagious to other people (a very common worry for many kids and worth explaining to them), but that he can easily catch things from other people right now. (His immune system will be severely compromised throughout the fall at least, and a common fever would probably send us back to Children’s for at least two nights.) And, he knows that some things…like losing his hair, having a hard time walking, throwing up, being extra hungry, being tired, etc…are side-effects of the medicines.

So, that’s part of the “new normal” in our house these days, and as our kids begin to see many of you more often, I thought it was worth sharing.

Thanks to everyone who has continued to pray specifically for us and especially for your kind posts/emails that let us know you’re still praying. It is such a huge comfort to know we are not alone in this fight.

RH

Week in Review

Well, it’s Saturday night and Blake’s getting ready to enjoy the Cowboys’ pre-season game. I’m not sure we’ve ever been so ready (and so thankful) for even the smallest diversion.

The last couple of days have been a continuation of the roller coaster we’ve been on…I’ll try to recap. On the days that Gage has to take certain medicines (usually Mon-Thurs), he’s been getting so upset that he throws up in the middle of the 30 minute medicine ordeal. Of course, throwing the medicine up just means that he has to start all over again. This week, he had several days where he threw up morning and evening, and it took us 2-3 rounds of medicine before he would finally keep it down. Again, this could be so simple, but when it goes bad, it’s very hard on everyone…tears, frustration, anger, sadness, exhaustion.

Thankfully, we’ve been able to take a break from those medicines the last two days, so that’s helped bring the emotion level down in some ways. Of course, then there are other things to juggle. I’m certainly feeling more pregnant…and all that comes with that. Also, all three kids feel like their needs are immediate and urgent all day long…even more than normal for a 6, 4 and 2-year old. Of course, some of Gage’s needs are more urgent, but things like wanting help to find a certain toy in the playroom isn’t an emergency. Sometimes the feeling in the house is that the kids are demanding, emotional, needy, unreasonable and incessant…and we’re exhausted. Of course, it’s not like life with three little kids is easy, but the circumstances of Gage’s health definitely increase the intensity of everything. (Even in the 10 minutes I’ve been writing this, I’ve lost count of the interruptions, requests, tears, etc.)

Gage is definitely feeling better at times, although his mobility is still very compromised from some of the earlier medications. He’s improving and can walk on his own, but it’s like the beginning steps of a toddler where any step or rough spot can cause him to fall. So, he still needs physical help throughout the day…getting in the car, sitting at the table, walking up steps, etc. He is able to get out of the house though and has enjoyed running a couple errands, eating out and going swimming. He’s also more social again and interacts with Avery and Ellie much more normally…certainly an answered prayer.

As I consider the week ahead, here are some specific ways you can pray for us:

* that Gage would take his medicine without incident…this would be huge!

*that Gage’s medicine would continue to be effective in fighting the leukemia and that the side-effects would be minimal and short-term.

* that all the kids would level out a bit emotionally. We don’t have much in the tank to deal with how crazy everyone can be right now.

* that Gage’s mobility would increase to the point that he could start pre-school with his friends on Sept. 5. He really wants to go and will be very disappointed and discouraged if he can’t be with all his friends. Please also pray that the week-long dose of steroids he takes next week won’t impede his mobility further, as the steroids are what caused it in the first place.

* that my pregnancy would continue to be uneventful. If that’s the case, we have about 3 weeks until the baby comes…around Sept. 7th.

* that Avery would enjoy her last week before school starts and not be anxious about starting back to school (Aug. 27), which she is right now.

* that all of us would continue to get accustomed to our weekly Monday visits to the clinic at Childrens. It’s never fun to tell him at 7:00 a.m. that’s where we’re going…and then he cries and is upset…and then Avery cries because she wants him to feel better…and then we leave with everyone in tears. Not an easy way to start a day that usually has us at the clinic for five to six hours.

* that Blake and I would be able to focus on each day and not get overwhelmed with all that this fall will hold both with the new baby and Gage’s continuing treatment. In particular, we know that during late October thru November, he’ll go back on all the medicines that gave us such terrible side effects before. It’s hard not to dread that time and let worry cause us to fixate on all the things that could happen.

* that Blake and I would have the energy, discipline and desire to look to the Lord for strength, encouragement and comfort during these long, emotional days…and that we would find time for our relationship as well.

And, please pray that we would remember to be thankful for the many ways the Lord has and is providing for us even in the midst of this heart-breaking time…for family and friends who love and support us in big and small ways every day, for more bright moments with Gage when he’s enjoying part of the day, for the blessing of being at home with all 5 of us under one roof at night, for our friend Leigh who has committed much of the next year to serving our family through out the week, for a wonderful hospital like Children’s and our great doctors there, for an encouraging long-term diagnosis for Gage…and for a God who welcomes our honesty, questions, doubts, fears and worries during this journey.

Matthew 11:28

“Come to me, all you who are weary and burdened, and I will give you rest.”

Thank you so much for praying for our family.

RH

A picture from our week…the cousins came over to play one day, and we all enjoyed popsicles in the backyard.

 

“Will I have leukemia when I’m in heaven?”

Out of the blue, this is the question Gage asked me last night. As I helped him get ready for bed, I reluctantly answered questions about death and heaven. In some sick and twisted way, I couldn’t help but wonder if the Lord was preparing me for the worst . . .

“Will I have leukemia when I’m in heaven?” he asked.

“No, Gage. You will not have leukemia. In fact, you will never be sick.”

“Really?” he asked.

“That is right,” I said. “In fact, you won’t ever cry again, either. No medicine. No leukemia. No tears.”

He asked other questions like, “Will I be able to fly?” and “Will we swim in heaven?”

Then, he caught me off guard with the next question: “Do I have to be like Ranger (our dog who died earlier this year) to go to heaven?” he wondered.

“What do you mean?” I asked.

“Will I be old like Ranger? You have to be really old to die,” he reasoned.

I quickly changed the conversation as the tears began to fill my eyes . . .

Obviously, you don’t have to be “really old” to die, but what good would it do for me to explain that to him right now? As a pastor, I have always tried to provide biblical answers to the questions people ask. Intellectually, I understand how to respond to the problem of evil and can quickly give a defense for the existence of God, etc. Yet, there are some questions the Lord has chosen not to answer. Life is not as black and white as it once was. Emotionally, my heart is broken and answers that used to solve my intellectual curiosity are unable satisfy the questions of my heart.

I often wonder what I would say if I were asked to speak this Sunday. I still don’t know the answer to that question, but I am sure I would stay away from pat answers and simple formulas. Tragically, 1-2-3, a poem and a prayer characterizes much of today’s teaching. Such a “spiritual diet” leaves people famished in times of drought.

It has been well said that when you cannot trace the Lord’s hand, you must trust His heart. With each new tear, bout of nausea and round of chemo, I’m learning what it looks like to trust Him in a whole new way.  Quite frankly, it is often hard to do.

On the road to a cure . . .

BH

The Bottom of the Barrel

It’s late, and so I (Rebecca) don’t have too much time to write, but I wanted to at least post a brief update on our week so far. Our Monday visit to Children’s went pretty well. We were there the usual five hours for everything, including another spinal tap. Gage did better at times and was actually conversational with us, instead of being completely withdrawn and quiet. At other times, though, he was very upset and emotional…understandable, but hard for everyone. I also had my weekly doctor’s appointment Monday afternoon (“doctor day” as we call it around here). Nothing big to report there, so that’s good news.

I think the biggest challenge facing us right now is endurance and strength for the road we’re on. Even as I type this right now, I have to really stop and think to separate the days and remember what happened when. It seems like we should be toward the end of the week, and then I realize it’s just Tuesday night…and that’s when it starts to feel overwhelming.

Monday night was a very rough, emotional night for Avery and Gage, and as everyone woke up this morning, I realized that even though I’d slept, I was still exhausted from it all. The picture that came to mind is that I feel like we’re just barely scraping together enough energy, emotion and focus for the day…we’re at the “bottom of the barrel” with nothing in reserve. It’s hard to absorb all that happens and all my emotions each day. By 8:30 this morning, we’d already had more emotion in our house than we would normally have in several days…frustration, anger, sadness, tears, jealousy, impatience…and the list goes on.

It’s certainly a new world we’re navigating, learning how to handle everyone’s needs while at the same time setting new boundaries with Gage that somehow balance compassion and discipline in an appropriate way. He especially is very emotional right now, and it’s hard to know moment by moment through out the day the best way to respond to his frequent outbursts.

Please continue to pray for us…

* that Gage would take his medicine without a fight and that it would soon be routine. This is a huge emotional battle twice each day and hard on everyone.

* that Blake and I would know how to love each child best right now. They are all dealing with the “new normal” in different ways and each grieves the loss of different things from the “old normal.”

* that I wouldn’t worry about the transitions to come: Avery starting 1st grade (which she’s anxious about) and the new baby coming. It’s hard to imagine adding both those things to where we are right now.

* that Gage’s mobility would continue to improve so that he could go to his pre-school once it starts in September and that we wouldn’t get discouraged when we consider how hard this fall is going to be for him as the medicine doses & side effects rise and fall.

* that Blake and I wouldn’t be overcome by exhaustion and sadness, but would have the energy, discipline, desire and faith to let the Lord fill us during this time.

It’s hard to even have the energy to take the time to be encouraged, but our friend Leigh left this verse on my bedside table, and I see it often…and it always helps:

Isaiah 46:4

…I am He, I am He who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you.

Thanks so much for your prayers.

RH