We didn’t make it to the park today. Justin has been having stomach pain, so our oncologist put him back on Zantac. This is most likely a side effect of his oral chemo medication, but we are definitely keeping an eye on it.

Our journey seems to be defined by a pattern of ups and downs. We have very difficult moments and joyfully triumphant moments. Sometimes both within the same hour.

We currently have a short break from IV chemo and will resume on the 24th of this month, which will begin Justin’s third cycle of chemotherapy. However, he is still taking oral chemo meds at home.

We are hoping to stay out of the hospital and clinic over the next two weeks. But that will depend on Justin not catching a virus and staying fever free. Either of those scenarios could possibly send us back for more care than we can provide at home.

Justin is currently experiencing social anxiety. He is very reluctant to go out or to socialize with others. I’ve read that this is a common, unfavorable side effect of childhood cancer. We are taking it slow and stepping lightly but firmly when necessary.

I understand that there are many difficult layers to this disease as we continue to experience new, demanding challenges. However, I’m trusting that God will provide the wisdom that I request each day. And my confidence is not in my own strength or abilities, but in His might and deliverance.

“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.” Jeremiah 17:7-8

Earlier today, Justin asked me if I could “get a fish and cook it.” Then he thoughtfully added, “make sure it’s a dead fish.”

Grace be with you, my friends.

 

Justin recovered nicely from his procedure. We are hoping to make it to the park for a little while today. Thank you for your faithful support and prayers! Grace be with you, my friends.

“Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation.
Let us come before him with thanksgiving and extol him with music and song.
For the Lord is the great God,
the great King above all gods.
In his hand are the depths of the earth, and the mountain peaks belong to him.
The sea is his, for he made it,
and his hands formed the dry land.
Come, let us bow down in worship,
let us kneel before the Lord our Maker; for he is our God
and we are the people of his pasture, the flock under his care.” Psalm 95:1-7

We are at the oncology clinic for the third of three lumbar punctures and spinal chemotherapy. Each time we come, Justin must have his port (central line) accessed. He describes this as having a “knife stabbed into his stomach.” It is actually a needle placed in his chest, but I imagine to a five-year-old, it is as frightening as his description.

We just finished that process, and it was truly a nightmare. Justin has had this done enough times now to know and understand what is coming. It took myself, Jeff and two nurses to hold him down and place the access tube. It was a kicking, screaming, hitting mess.

As I held his arms down, sitting behind him and hugging him against me, I kept repeating in my mind, “This is saving his life…this is saving his life.” I also quickly asked the Holy Spirit to pour out a permeating salve into Justin’s heart and mind.

The procedure is not safe and cannot be done if Justin is moving. The Spirit calmed him enough to proceed successfully.

We are waiting on the next phase of today’s treatment. Please pray along with me.

I’m meditating on the following portion of Psalm 18. I think of the time I jumped into the deep end our pool, fully clothed, to rescue a little boy who forgot to put on his arm floats. I didn’t think. I didn’t breathe. I was completely focused on the boy as I reached out and pulled him toward me.

How much more powerful and loving our Father is and how far He can reach into the deepest depths!  Our enemy is cancer, but the hand of the Lord is on us.

16 He reached down from on high and took hold of me;
he drew me out of deep waters.
17 He rescued me from my powerful enemy,
from my foes, who were too strong for me.
18 They confronted me in the day of my disaster,
but the Lord was my support.
19 He brought me out into a spacious place;
he rescued me because he delighted in me.

 

My glance caught Justin’s mindful prayer posture during yesterday’s church service. Warming this mother’s heart, I couldn’t help snatching my phone and capturing this sweet moment in time. (Yes, I was paying attention to the service!)

But after a relatively active weekend, Justin is not feeling well today. Physical therapy was a kicking, screaming mess this morning. Justin, not me. Although, admittedly, I felt like kicking something myself.

This may sound like I’ve come completely unhinged, but the best part of my day was sitting on my kitchen floor half-laughing, half-crying, but certainly asking Jesus to take over this impertinent day. After fighting through my own physical limitations all morning, my legs momentarily collapsed and I ended up leaning against the pots and pans cabinet in full surrender. Yes, I was chagrined, but also fully cognizant of this apparent reminder to lean thoroughly into the strength of Jesus and not my own.

However, I don’t need to GIVE God control. He already HAS it. I just need to take a deep breath and hold onto Him.

And I will get tired again. I will get frustrated again. I will get sad or angry or grieved.

But to this place and purpose, God has called me. The significance of His calling far outweighs my feelings. God’s good design is of infinitely greater value than our fleeting sentiments.

I think of Queen Esther and God’s call on her life to be utilized as His instrument to deliver His people. She boldly approached the king, at the risk of death, to plead on behalf of the Jews for their protection. Her request was granted and many lives were spared. Esther 4:12-14

12 When Esther’s words were reported to Mordecai, 13 he sent back this answer: “Do not think that because you are in the king’s house you alone of all the Jews will escape. 14 For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”

Such wise and true insight concerning God’s sovereign placement of each individual. Wherever we are in this moment, whether it be performing brain surgery or merely wiping our child’s snotty nose, we can take heart in the certainty that we have been placed there by our Creator.

Thus, no task lacks value or importance, no matter how mundane or seemingly trivial. No circumstance is without worth, whether it be undeniably painful or extremely pleasant.

Whether my heart rejoices watching Justin attentively fold his hands in prayer or grieves over the complications of his physical struggles and my own, I have reason to believe that BOTH scenarios are essential to God’s good purposes. “And we know that ALL things work together for GOOD to those that love him and are called according to His purpose.” (Romans 8:28)

Grace be with you, my friends.

 

 

At the oncology clinic waiting for chemo and a lumbar puncture, utilizing our usual distraction techniques. Video games. Gotta love them.

As for me, I’m guzzling coffee and silently praying through my impatience. Waiting is not my favorite thing to do especially when I know that needles and punctures and screaming and fear-filled eyes and holding down of arms and legs is on the other end of our wait.

5 Yes, my soul, find rest in God;
my hope comes from him.
6 Truly he is my rock and my salvation; he is my fortress, I will not be shaken.
7 My salvation and my honor depend on God;
he is my mighty rock, my refuge.
8 Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. Psalm 62:5-8

I find that meditating on the Psalms is like a soothing balm to an anxious soul.

Thank you for praying along with me.

 

The ups and downs of this journey continue. Just after rejoicing at Justin’s regained ability to kick a ball, I had to explain to him today that he would not be able to play baseball this year.

Michael is gearing up to start the baseball season, so Jeff took him out last night for a new glove. Of course, Justin was included in the outing and came home sporting a new glove as well. But I told Justin that he would have to wait to join the team next year, and he could help Michael practice for now.

He didn’t quite get that.

Today, Justin excitedly told a friend that he and Michael were playing baseball on the same team. With a heavy heart, I, again, explained that he would have to wait until next year. I told him that his arms and legs will be stronger then and much more ready to hit home runs and circle the bases.

Of course, it is not the end of the world that he can’t play baseball this year. And the miracle of his rapidly returning health and strength far outweighs the disappointment. But a five-year-old doesn’t understand that. And no matter how many times I explain this to him, his sad eyes reveal a knowledge and experience of affliction at what seems far too tender an age.

Once again, I must redirect my mind and heart from dwelling on circumstances to meditating on truth. I know that God is the sovereign Author of our stories. We will experience pain and loss and sadness and disappointment, but we must fiercely hold onto our faith in Scripture which promises that God is working each difficult moment to our own good. (Romans 8:28) It is in these hours that we are being refined to His good purposes. How awesome is it that the Creator of the universe would care to mold and shape us into something new and better to His glory!

“Praise our God, all peoples,
let the sound of his praise be heard;
9 he has preserved our lives
and kept our feet from slipping.
10 For you, God, tested us;
you refined us like silver.
11 You brought us into prison
and laid burdens on our backs.
12 You let people ride over our heads; we went through fire and water, but you brought us to a place of abundance.” Psalm 66:8-12

When I am able to view Justin’s disappointment through the lense of truth, I am actually grateful that God has chosen Justin’s little life to move in big ways. Of course, I still don’t like to see my son’s disappointment, but I believe in the greater plan that is unfolding beyond the realm of the human eye.

Grace be with you, my friends.

 

“How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you.” Psalm 31:19

Justin is regaining his strength by the day. Today, for the first time in months, he kicked a ball around the house and tried to run across the room. He was so energetic and full of joy. He wanted to show Jeff and I and his brothers that he can ALMOST run. After receiving the wonderful news of remission, watching him play was truly grace upon grace.

We still have some ground to cover concerning physical therapy. Justin cannot walk up steps or get to a standing position from the floor. But today was a huge step and the Lord IS faithfully restoring Justin to a healthy, active little boy. I grieve my son’s suffering, but I never doubt complete healing and full restoration.

Thank you, Jesus, for giving my boy a second chance at life. To God be the Glory.

Rejoice with us, and be confident in your prayers! Grace be with you, my friends.

https://www.stbaldricks.org/participants/mypage/835863/2016

Justin’s condition has significantly improved in the past weeks, but he is still not able to walk very well. He has also regressed to habits and behaviors consistent with a much younger child.

We are no longer in the vomit-catching-diaper-changing-sleep-deprived-survival phase of his care. However, we are now presented with new challenges as  we attempt to focus on physical therapy, homeschooling and nurturing behaviors more appropriate to Justin’s age.

It is a difficult balance. Justin is still receiving chemotherapy and due for two more lumbar punctures this month as well. He is still not feeling well and must go through painful, uncomfortable, scary experiences. But we see the effects of coddling him. Naturally, he expects that kind of treatment all the time.

We get it.

But it’s really hard not to baby him when he’s having needles stuck in his chest and spine every week. It’s difficult not to spoil Justin a little when he sadly talks about not being able to run around with his brothers anymore or go to a birthday party with them. And it’s especially hard not to do so when he excitedly stands up to play Wii tennis then falls to the floor because he hasn’t the strength or balance to stand for more than a few minutes.

It is difficult to know when to use tough love and when to just let him play Lego Star Wars and eat hot dogs all day. Especially considering all Justin has been through. But, as parents, I know we must do what is best for him in the big picture even if it hurts a little. On the other hand, I think he should get French fries and a milkshake for dinner if that’s what he wants. He’s five-years-old, lost his ability to walk, lost his life as he knew it and has been through 40 days of chemotherapy for crying out loud.

So, as you see, it’s a strenuous balance. And one we have certainly not achieved just yet. But we are aware of potential consequences and working toward sorting this all out.

I’ve had a few minutes to breathe since I haven’t been scrubbing soiled carpet and washing blankets every five minutes. During the adrenaline fueled weeks at the hospital and first few at home, I didn’t really pay attention to my own physical struggles.

My body is clearly not happy with the stress and it’s reacting accordingly. I’m experiencing back pain, joint pain and muscle pain. yes, it is difficult, but not unbearable.

Undoubtedly, we need wisdom to make good decisions and grace to pull us through each day. Where else can I go, but to the Lord? Who else is able to grant wisdom and pour out grace on the undeserved? Not only that, but God desires to walk with us, shelter us with his presence and give us rest.

12 Moses said to the Lord, “You have been telling me, ‘Lead these people,’ but you have not let me know whom you will send with me. You have said, ‘I know you by name and you have found favor with me.’ 13 If you are pleased with me, teach me your ways so I may know you and continue to find favor with you. Remember that this nation is your people.” 14 The Lord replied, “My Presence will go with you, and I will give you rest.” Exodus 33:12-15

Amid the chaos and the pain, my heart is steadily joyful. And although my mind and body are stressed, I have a calm stillness of spirit. This can only be because I know the presence of God is with me. And I believe that, ultimately, His time of rest will prevail.

Grace be with you, my friends.