Quick Update

Thanks for all your prayers, and sorry for the delayed update. Yesterday was emotional for all of us heading back to Children’s, as Gage woke up saying he wanted to go swim, and Blake and I had to tell him that instead we were going to spend most of the day at the clinic. No fun for anyone.

However, the day went pretty smoothly, and he seems to be feeling okay today. It will take a little while to know what new side effects he might have from this round of medicine, but we’re thankful he feels good this morning. We know we’ll be at Children’s every Monday through December, with each Monday from now until mid-September including a spinal tap. We continue to pray that the treatment would be effective and that the side effects will be minimal.

This morning, for the first time since June 19, I am at home with all three kids by myself…a real milestone and a complete joy. I even got to put up laundry upstairs by myself for 10 minutes without an emergency call from the kids. And when I came downstairs, Avery was practically doing physical therapy with Gage trying to get him to walk…and he did! A few, slow, halting steps have never looked so good. She told him that if he kept doing that with her each morning, he should be able to run soon. So cute…and a big answer to prayer. As long as his walking isn’t painful and continues to progress, the doctors aren’t worried about it.

So…I have to run to keep up with the kids…yeah !

Thanks again for your prayers.

RH

My First Journal

As I (Rebecca) was thinking about our day today and my thoughts about tomorrow, I realized how often I think of my day in terms of how I could best describe it on the blog. The irony is that this blog is really the first journal I’ve ever kept. Kind of funny, I think, that the first time I would consistently write down my thoughts would be so public!

And, as I considered what to share, I thought about I Peter 5:7, which says:

Cast all your cares upon Him, because He cares for you.

This experience, and this blog, have caused me to take my list of worries and translate them into a list of prayer requests. And knowing that you are praying for us is such a great incentive to take the time to specifically think through what exactly is causing us anxiety and to pray specifically about it…probably a habit worth keeping. And such a comfort that the Lord desires for me to consider my cares and cast them upon Him, instead of carrying them on my own.

So, here are some specific ways you can pray for us:

* We take Gage back to Children’s tomorrow to begin the next stage of his treatment, roughly a five month period. We’ve had a great weekend with Gage and his spirits are much better, so it’s very hard to accept that we “start all over” with a new round of treatment tomorrow. The thought of waking him up early tomorrow morning and telling him we have to go back for another long appointment just brings a feeling of dread. And again, it forces me to accept what I would still like to wish away…that Gage does have leukemia. Please pray for Blake and I to depend on the Lord for the endurance and strength (especially emotionally) that we’ll need for tomorrow.

* Gage’s time at Children’s will include a spinal tap, several chemo drugs (one of which gave us many side effect problems earlier) and two large injections into his thighs. Please pray that he would have as little anxiety as possible about being at the hospital and that the sedation would work properly so the procedures go smoothly. Please also pray that the side effects of the drugs we’ve had problems with would lessen and that the new chemo drugs he begins to take daily at home would not cause new side effects.

* Gage is still not walking without help. This is a big prayer request because of daily life for us at home (with 6 weeks to go until the baby comes, I can’t carry him…and it makes it very hard for Blake to leave home for long). He can walk with support, but it’s still not easy and there are many simple things he can’t do, like get on & off the couch or walk up the stairs even with help. The doctors feel like the chemo drugs have caused this through muscle weakness and joint aches. However, they may want to check it out more tomorrow if they don’t feel like he’s made enough progress (x-rays, more doctors, more time, etc.). Please pray that he will regain his mobility soon and that this issue won’t be related to any new problem.

* Please continue to pray for our family life at home. Today Gage actually had a pretty good day, but the girls did not. I know they are needy and want everything to go back to normal, but that’s not possible right now. Blake also didn’t feel well today (hopefully allergies and nothing contagious), and I certainly don’t have a normal amount of physical energy…not a great combination with where the girls were today. The issues of perceived favoritism, lack of attention, exhaustion, fragile emotions, grumpiness and neediness definitely ruled the day. Please pray that we would be able to love the girls well and that we would draw from the ultimate source of love (as we certainly run dry quickly these days). As First John 4:19 reminds me, “We love because He first loved us.”

* And, please take time to thank the Lord for the prayers He’s graciously answered…Gage’s sprits are higher, we were able to take the kids swimming Saturday afternoon, we’ve had a few pieces of family time with just the five of us at home (and survived!), we slept again last night, my pregnancy seems to be continuing without complication…and we continue to be loved well by all of you.

Thank you again for your prayers for our family.

RH

First Night

Last night was the first night since Gage’s diagnosis that . . .

• Everyone slept in their own beds
• Gage didn’t cry out for help
• I didn’t think about survival rates or worry about insurance
• Rebecca and I have been on a date
• Everyone slept through the night

Praise the Lord for a good night’s rest!

On the road to a cure . . .

BH

Relief

Thanks so much to all of you for your emails, posts and notes about your prayers for us today at Children’s. Blake and I are always amazed and encouraged by the many ways so many of you have served and given to our family. And, thankfully, we have good news to report from today.

Gage is in the lowest possible risk category for the ALL type of leukemia that he has…a huge relief. After bits and pieces of information that we’ve gotten along the way, we were hopeful that would be the case, but it never seems real until the doctor says it to you.

Blake and I were able to spend an hour today with one of Gage’s doctors to review the specifics of why he’s in the low-risk group, understand the decisions we need to make about his treatment and review the plan for the next six months or so. It’s way more detail than I can go into here (or that you would want to read!), but suffice to say that there is much to learn and understand.

After leaving, we were both pretty exhausted…and with mixed emotions. There is a huge sense of relief that he’s in the lowest risk group and that his long-term prognosis is encouraging. Still, there is a mountain of information to sift through about the visits we will make weekly to Children’s for the next six months…new drugs, new side effects, frequent spinal taps and more doses of the drugs that have caused many of the side effects we’ve struggled with daily for the past month.

I have to remind myself as the list seems long and overwhelming that the side-effects aren’t really an option; we have to treat the leukemia, and the drugs do have side-effects. Still, part of me can’t believe that Gage even has leukemia. So, today’s news was good…but it’s a place you’d never want to be.

I remind myself that we’re just going to have to continue to live one day at a time…as the Lord always intended for us to do anyway…and that we will make progress. Of course, as the mom, I also start to factor in the new baby, 1st grade for Avery, pre-school and potty-training for Ellie, etc…and as I’ve said many times, it’s not like this fall was going to be dull to begin with. Thankfully, the Lord is teaching me (and giving me) a new contentment and peace that I’m not supposed to know today how all of that is going to work itself out. I’m just supposed to trust in Him and depend on Him daily. I was never meant to know every curve in the road ahead of time. Again and again, this verse has been on my mind the last few days:

Proverbs 16:9

The mind of a man plans his way,
But the LORD directs his steps.

Please join us in thanking God for today’s good news and asking that we would continue to surrender our plans to His direction.

RH

By Faith

As I read today’s Journey entry (see www.jointhejourney.com), I am reminded once again of just how much I am like the Israelites. In 1 Samuel 8, they rejected the Lord as their king in place of one they could see with their eyes. Like the Israelites, it is much easier for me to trust in what I can see rather than live by faith. Hebrews 11:1 states:

“Now faith is the assurance of things hoped for, the conviction of things not seen.”

The chapter goes on to list people of great faith, those whose trust in the Lord was not dependent upon what they could see.

Of Noah, it says: “By faith Noah, being warned by God about things not yet seen, in reverence prepared an ark for the salvation of his household . . . ” (11:7)

Of Moses, it says: “By faith he left Egypt, not fearing the wrath of the king; for he endured, as seeing Him who is unseen . . . ” (11:27)

Today, when we meet with the doctors to learn of Gage’s prognosis, I will be tempted to trust in what they can see. But, the same God who parted the Red Sea, toppled the walls of Jericho and spared Daniel in the lion’s den is not limited by blood counts or the wisdom of man. Please pray that Rebecca and I would live by faith today, regardless of what we can see.

On the road to a cure . . .

BH

“And without faith it is impossible to please God, because anyone who comes to Him must believe that He exists and that He rewards those who earnestly seek Him.” (Hebrews 11:6)

“That is the God for Me”

The kids are in bed, and the house is finally quiet. All things considered, Gage had a great day. It was the first day that I can remember since his diagnosis that he didn’t cry out in pain. Physically, he is just a shell of who he once was, but his little spirit is beginning to shine through again.

For too long I took my children’s health for granted. Not any more. We looked forward to a summer filled with days at the pool, time outdoors and enjoying family vacations together out of town. Now, we are grateful for every day that Gage doesn’t cry, takes a step on his own and is able to play happily for ten minutes with his sisters.

I have more questions than I do answers, but through it all my hope remains in Jesus. Apart from the cross, our suffering would be intolerable.

In his book, “The Cross of Christ”, John Stott says it best:

“I could never myself believe in God, if it were not for the cross. The only God I believe in is the One Nietzsche ridiculed as ‘God on the cross.’ In the real world of pain, how could one worship a God who was immune to it? I have entered many Buddhist temples in different Asian countries and stood respectfully before the statue of the Buddha, his legs crossed, arms folded, eyes closed, the ghost of a smile playing round his mouth, a remote look on his face, detached from the agonies of the world. But each time after a while I have had to turn away. And in imagination I have turned instead to that lonely, twisted, tortured figure on the cross, nails through hands and feet, back lacerated, limbs wrenched, brow bleeding from thorn-pricks, mouth dry, and intolerably thirst, plunged in God-forsaken darkness. That is the God for me! He laid aside his immunity to pain. He entered our world of flesh and blood, tears and death. He suffered for us. Our suffering becomes manageable in light of His. There is still a question mark against human suffering, but over it we boldly stamp another mark, the cross which symbolizes divine suffering.”

None of this makes sense to me; probably never will. However, against the backdrop of the cross, I have hope. I know that God understands our pain, cares for us and promises to one day deliver us from our suffering. Yes, Jesus Christ, “that is the God for me,” too.

On the road to a cure . . .

BH

Enjoying the Moment

As I watch Gage lying still on the floor as the race cars fly around the track beside him, my heart is filled with joy. This is the first time I’ve watched him play on his own since we entered the hospital on June 20. It appears as if this day may actually be filled with smiles and laughs. It has been too long . . .

His stomach pain has finally started to subside, and his ear ache no longer seems to bother him. He still cannot walk on his own, but I’m sure that will come in time. Although remission doesn’t mean cured, we are starting to enjoy short pockets of time where he can be a kid again. Hopefully, our “new normal” will begin to look more like this than what we have experienced thus far.

I’m a little anxious about what we will learn tomorrow concerning his ongoing treatment, but until then, I’m going to enjoy today. Moments like these don’t come around too often, and I’ve learned not to take them for granted.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6:34)

Please pray:

• Gage will be in the lowest risk category
• Against relapse and infection
• Our hearts would accept whatever the Lord has planned

On the road to a cure . . .

BH

Exposed

I awoke this morning feeling like a prize fighter who won a big fight but is so beat up he can hardly enjoy it. Remission . . . Remission . . . Remission . . . I continue to repeat to myself so maybe at some point I will actually believe it. I was beginning to think we’d never hear those words.

The leg pain, stomach cramps, and now congestion and ear infection still cause him pain, but as I shared before, we are winning the war. I know it is hard for him to think beyond the immediate pain he feels. I told him early this morning when he woke up crying that we can make it through these complications, and the most important thing is that all the “bad” blood is gone. (I’ve explained leukemia as a battle between “good” and “bad” blood, and the medicine “shoots” the bad blood . . . he thinks that part is cool). Nonetheless, we will go back into the hospital clinic today to treat the pain.

——

On a completely different note, this whole experience continues to expose areas in my life I’m not proud to admit. Sadly, it has exposed my lack of faith, lack of gratitude, controlling nature, sense of entitlement, love of ease & pleasure, anger, pettiness, selfishness, pride, and so much more. At times, in an effort to numb the pain, I’ve “bowed down” before the “idols” that this world tells us can help…overspending, overeating, mindless entertainment, etc. When in reality, the only rest that truly satisfies comes from the Lord (Matthew 11:28).

In the words of the Scottish hymn-writer:

“‘Twas I that shed the sacred blood;

I nailed him to the tree;

I crucified the Christ of God;

I joined the mockery.

Of all that shouting multitude

I feel that I am one;

And in that din of voices rude

I recognize my own.

Around the cross the throng I see,

Mocking the Sufferer’s groan;

Yet still my voice it seems to be,

As if I mocked alone.” (Horatius Bonar, 1808-1889)

We’ve all gone into a test we thought we were prepared for only to find out we had a lot more to learn. This has shown me that I have a lot more to learn (James 1:2-4).

On the road to a cure . . .

BH

Remission!

Good news . . .

We learned today that Gage is in remission and are breathing a huge sigh of relief. As crazy as it may sound, I think we feel more exhausted than excited. It is like we have been running in a race all this time, and now we can finally relax . . . at least for tonight. We realize that we still have a long road ahead of us (three years of treatment to fight against the “sleeping” cells), but thankfully we received the news we wanted to hear. One step at a time . . .

Gage’s playful personality is beginning to come back, and he and Avery are starting to reconnect like old times. They are even sleeping in the same room tonight, just like they used to do.

——-

Well, as I was writing the first portion of this blog, Gage started to scream, and apparently, he has an ear infection. (So much for Avery and Gage sleeping in the same room!) This is not surprising given the viral infection the doctors think he has. They tell us that we need to wait for it to take its course.

To be honest, aggravations like this drive me crazy. It is as if we are about to sit down and relax, and someone comes along and kicks the chair out from beneath us.

But, given the good news about his remission, I’ll take an ear infection any day!

——-

OK, just got off the phone with the doctor on call. (This post feels like play-by-play.) We’ve given Gage some pain medicine and hopefully he will be able to sleep through the night. Hopefully, we will too . . .

Please pray:

• That Gage will be in the lowest risk category for his long-term prognosis (We’ll know more on Friday)
• Against relapse and infection (by far and away our two greatest threats)
• For tonight’s ear infection…that we would all sleep and that we wouldn’t have to take him to Children’s in the morning if it persists

On the road to a cure . . .

BH

Finally…a better day (from Rebecca)

Ok…I hesitate to write about today for fear I’ll jinx tomorrow, but I know that’s not how God works, so here goes…

We finally had a better day today. For starters, Gage hasn’t needed the prescription pain medication for the chemo side-effects in the last 24 hours. This also means our day today wasn’t full of him crying out in pain. Instead, he actually played a bit with Avery & Ellie with a new “Cars” racetrack toy some friends brought yesterday (thanks!). Avery was thrilled to set it up so he could see it, and then got as many cars racing as possible so they could laugh when the cars crashed. Laughter has never sounded so good.

Also, we got out of the house for about an hour to go to the mall for new “light-up” tennis shoes, a pretzel and some cookies. Although it’s different to have to push Gage in the stroller, it’s so great to see him enjoying being out of the house and interested in what’s happening around him. He also mentioned a couple things he’d like to do tomorrow, which is great to hear.

Really, more than anything for me, the difference today is that Gage smiled. For weeks now, I’ve watched his face fill to overflowing with pain, sadness and discouragement. Today, there was a sparkle in his eyes, sweet smiles, laughter and funny conversations. Today, I saw Gage again.

Still, I know we’re all continuing to adjust to the “new normal” the doctors have told us about and that it’s a long road ahead. Even in the midst of this much better day, Gage still probably took 7-8 doses of medicine…and this is the week we get to take a break from the medicines, relatively speaking. Also, he’s still not walking on his own and is most comfortable on the couch most of the day…so inconsistent with being a four-year-old little boy.

But I thank the Lord for today, and try not to let worry about the future rob me of the gift of the present. It’s impossible to even really describe the feeling deep inside me that is so soothed and content from the simple pleasures of today compared to the pain of some of the days we’ve had in the last few weeks. So, even though today wasn’t like our “old normal,” I’m thrilled with the gift the Lord gave us in today.

Please take time to thank the Lord for the answered prayers of today and to pray that Gage would begin to walk soon on his own.

James 1:17

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

RH