Day 670

 

We are very, very grateful for your support.

Justin is tired. I am tired. But we are pressing on.

I originally said he would be checked again this Wednesday. But after a lengthy conversation with one of Justin’s doctors, the plan has changed.

His liver functions have improved! So his team wanted to check to see if his blood counts are stable enough to start him once again on chemotherapy this Wednesday.

But I said no. It can wait one more week. His body needs to rest.

He is already scheduled for a spinal and chemo infusion on the 29th. But the handfuls of chemo pills can wait until then.

His doctor, who is my favorite, agreed.

So rest he shall. I am keeping him home and away from germs because he has no immunity right now. He will rest. And I will try to disguise foods loaded with vitamins.

He has not gone out except to clinic in about two weeks. Today we visited a friend at his house, and enjoyed playing with his rather impressive Thomas the Train collection.

Justin will be able to go out for Thanksgiving, then back to his “bubble.” I  believe this is the best way to allow his body to recover without a communicable illness putting him into the hospital.

We set up Minecraft PC and he’s been playing online with friends while FaceTiming. It’s a pretty great temporary substitute for actually playing with other kids.

EC82151C-6109-4B3A-80B9-1367C7206687I write from a friend’s kitchen table with a hot cup of tea and sun streaming through a picture window. I am listening to Justin play a game with his friend.

Everything is going to be okay. I believe that. I will be fat and have gray hair, but my baby will be okay.

Lift up your eyes and look to the heavens:
Who created all these?
He who brings out the starry host one by one and calls forth each of them by name.
Because of his great power and mighty strength, not one of them is missing. Isaiah 40:26

 

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Day 665

I have this recurring dream that I am about to go on stage only to realize I haven’t learned my lines. But I step out anyway, make them up as I go along and somehow it all works out.

I had a pretty intense theatre phase in college.

I wasn’t expecting to parent a child with cancer. I step out in faith each day not really knowing what I’m supposed to say or do.

Justin’s white blood cell count is still crashing, but red cells and platelets are showing signs of improvement. Curious.

We are waiting on another liver toxicity screening. Chemotherapy meds are still on hold, and Justin will have another CBC next Wednesday.

IMG_7425At this point, Justin is neutropenic, highly susceptible to infection and communicable illnesses. We’ll have to keep him home and away from anyone who’s recently been sick.

I am very grateful for the incoming stream of visitors, messages, encouraging comments and dinners that I did not have to cook. Except for being thankful and a moment of good cheer wandering through the Christmas section at Target, I mostly just feel kind of numb. I don’t really know what that means for sure, but I know I am definitely tired.

Recently these verses jumped off the page and got themselves stuck in my brain:

Now while he [Jesus] was in Jerusalem at the Passover Festival, many people saw the signs he was performing and believed in his name. But Jesus would not entrust himself to them, for he knew all people. He did not need any testimony about mankind, for he knew what was in each person. John 2:23-25

Self-talk can be a really good thing. Today I have to keep telling myself…you are known by Jesus. You are known. You are KNOWN.

I don’t have to know why this is happening. I don’t need to always get this cancer mom thing right. There is no script to follow.

I’m just holding onto faith. That’s it. I’m stepping out there, moving through the day and holding onto faith. Grace be with you, my friends.

Today I Grieve

IMG_7426The life of a bright and beautiful little girl has been cut off by harsh, toxic cancer treatments. She had leukemia. She died of a heart attack. She was seven years old.

Emily, my favorite was when you didn’t feel like doing your school work with the home tutor, so you put dots all over your face with a red magic marker and said you had the chicken pox. I also liked when you wore glasses and drank tea and looked impossibly mature yet charmingly mischievous.

You, Emily, let true colors show and they were indeed beautiful like a rainbow. Those of you who grieve with me will know what that means. Deb, you captured each delicate moment with admirable enthusiasm, lamentable honesty and brilliant wit. I love you and thank you for this.

Today, I also grieve my own son’s loss of childhood. The blood transfusion perked him up a bit, but today he is sick and forlorn on the couch again.

I looked one of Justin’s doctors in the eye Friday and asked him why he is suddenly not doing well. He could not answer. Only that Justin’s blood will be checked again Wednesday.

I fear relapse. I fear liver damage. I fear relapse more.

I wait. And I grieve.

These are only children.

I paste a smile on my face for my boys. But when I am alone, I am grieved.

My only comfort is knowing that God is with me and that He is beside Justin and that He holds Emily, whole and well and shining, in His arms.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16‭-‬18

 

Day 660

IMG_7415Justin continues to downward spiral this month. Extreme fatigue, headache and a ghost-white pallor caused me to bring him into clinic for an extra check up. Sure enough, he was in need of a blood transfusion to boost his counts. He won’t resume chemotherapy until this is resolved and his blood counts as well as liver is stable and able to handle it.

Justin’s temperature and blood pressure are both being monitored as he receives some kind person’s blood. Please remember blood saves lives, so please give if you are able!

I am trying to make this as “fun” as possible. Justin and his pal, Benjamin, have been killing time together playing Wii and are now watching Star Wars while cleaning out the patient snack pantry.

Not exactly sure why Justin’s body is suddenly reacting negatively to maintenance chemo. But I know God is faithful.

 

Day 656

IMG_7356Justin is sick and miserable on steroids.  He missed a school field trip Friday, a birthday party Saturday, Sunday school and Christmas program rehearsal today.

These are all things he’d be gladly doing if he were well.

He isn’t well.

This cuts me day after day after day.

The suffering. The missing his childhood.

Every little piece of normalcy stripped away.

Nearly every part of me having a life outside of pediatric cancer is gone. What I still hold onto comes with a price.

So I keep reminding myself. Justin is alive. He is alive. He is alive.

Friday he bled and bled and bled. I held him and caught his blood for nearly an hour.

Leukemia. Blood cancer.

I am burnt out. I am always burnt out now. After 656 days, I don’t remember what not being burnt out feels like.

Yet.

I know that Light is here. I can’t see it. I can’t feel it. I can’t touch it.

I just believe.

And, because of this, I know that even if we should be wrung out to the point of death, we will wake in the Light.

In him was life, and the life was the light of men. The light shines in the darkness, and the darkness has not overcome it. John 1:4-5

 

 

 

Test Results

IMG_7339Justin’s liver toxicity screening came back showing elevated bilirubin, but, at this point, not dangerously. Except for the Vincristine infusion yesterday, his team is stopping all chemo until this resolves. I also got a “good catch, mom” and “continue to trust your instincts” which are welcomed compliments when you’re continually second guessing yourself over every little symptom.

Justin is having a rough time today recovering from a 100% Vincristine infusion, cranked up from 50 then 75%. We had cut it down to give his feet a break from neuropathy pain and heel cord shortening, but it’s too risky concerning relapse to stay at a lower dosage. Painful, messed up feet v. cancer relapse. The choice is obvious.

Except for steroids, Justin won’t take any oral chemo meds until his platelets stabilize and liver screening comes back normal. I guess it’s a break of sorts, but he’s still feeling “really sick and I just don’t feel good, mom.”

Thank you for continued prayer and support.

Day 652

IMG_7333I am weighted down by two large millstones. They pull and tear and try their best to break me.

Three days I have battled excruciating pain as muscles atrophy and joints bear the burden of moving my body forward. This is neuromuscular disease for which there is no treatment or cure. My doctor at the UPenn MD clinic connected me with a doctor at the NIH who would like to see me. But this entails paperwork and forms and travel and a lot of stuff that I already do for Justin. Makes me feel exhausted even thinking about doing this for myself as well.

My youngest son battles leukemia for which there IS treatment but, although chemotherapy kills cancer cells, it sometimes becomes too harsh for his little body. Justin’s platelet count has crashed considerably and his eyes are yellow where they should be white. His doctor has taken him off all oral chemotherapy drugs until his blood counts return to a more comfortable level. He will be re-checked in two weeks.

We are also waiting on the results of his liver toxicity screening. This is something we’ve had our eye on all month, and has improved some with good hydration. But Justin’s eyes are still not okay, which makes me think his liver is also not okay.

Yes, I’m a little worried. It all feels like a kick to the face even as I struggle to get up.

Still, I am not broken. A little more cracked, perhaps, but not broken. This is because I trust in a God who is bigger than all of this. A God who has sent help time and again. My God. All of this will fade away, but His kingdom is forever.  Because I believe this, I know that no matter what happens, we will be okay.

We WILL be okay.

I waited patiently for the Lord;
he inclined to me and heard my cry. He drew me up from the pit of destruction, out of the miry bog,
and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord. Blessed is the man
who makes the Lord his trust, who does not turn to the proud, to those who go astray after a lie! You have multiplied, O Lord my God, your wondrous deeds and your thoughts toward us; none can compare with you! I will proclaim and tell of them, yet they are more than can be told. In sacrifice and offering you have not delighted, but you have given me an open ear. Burnt offering and sin offering you have not required. Then I said, “Behold, I have come; in the scroll of the book it is written of me: I delight to do your will, O my God; your law is within my heart.” I have told the glad news of deliverance in the great congregation; behold, I have not restrained my lips, as you know, O Lord. I have not hidden your deliverance within my heart; I have spoken of your faithfulness and your salvation; I have not concealed your steadfast love and your faithfulness from the great congregation. As for you, O Lord, you will not restrain your mercy from me; your steadfast love and your faithfulness will ever preserve me! For evils have encompassed me beyond number; my iniquities have overtaken me, and I cannot see; they are more than the hairs of my head; my heart fails me. Be pleased, O Lord, to deliver me! O Lord, make haste to help me! Let those be put to shame and disappointed altogether who seek to snatch away my life; let those be turned back and brought to dishonor who delight in my hurt! Let those be appalled because of their shame who say to me, “Aha, Aha!”
But may all who seek you rejoice and be glad in you; may those who love your salvation say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God! Psalm 40 

 

 

 

 

 

Just This

IMG_7190When the days are really full and Justin is sick over too many pills. When I’m in a kind of pain that Advil doesn’t touch and I still have to carry a seven-year-old on chemo. This is when I really want to hide under the covers with Oreos, heat and a good book.

Instead, I remember my hope in the Lord. This will all go away, but God’s kingdom is forever.

The Spirit of the Lord God is upon me; because the Lord hath anointed me to preach good tidings unto the meek; he hath sent me to bind up the brokenhearted, to proclaim liberty to the captives, and the opening of the prison to them that are bound; To proclaim the acceptable year of the Lord, and the day of vengeance of our God; to comfort all that mourn; To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified. Isaiah 61:1-3

Your continued support is crucial, and to the faithful, I thank you. Grace be with you, my friends.