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

 

 

 

Advertisements

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.

Day 639

 

Justin loves dogs. I need breaks. My friend, who has a dog, has agreed to tutor Justin three days a week.

Kerry is phenomenal with Justin. She “gets” him, and he trusts her.

My disease has been kicking my behind lately. I HATE saying this, but I just cannot do it all.

Be encouraged if you have been praying for us. The answer has come in the form of pet therapy and a teacher for Justin, who is the most patient, go-with-the-flow person I know. Plus, she makes me laugh.

We’ve been given another game-changer.  Buzzy, the needle stick pain reliever, and now this. Feeling so relieved I could just bawl my eyes out. Grace be with you, my friends.

For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need. Hebrews 4:15-16

Home Again (But We Almost Weren’t)

Just touched down in Philadelphia. It’s cold, but it’s home.

We were running a bit late after spending a little too much time at Disney Springs for an early dinner and yummy cupcakes. Actually, really late. We forgot the Orlando airport is a nightmare.

I pulled the cancer card and produced a few tears for the nice TSA man, who promptly bumped us up to the front of security check. Desperate measures, people. I have two more babies at home missing their mama.

We ran to the gate for a dramatic finish. What can I say? The cupcake was worth it. God is good. Grace be with you, my friends.

The Lost Day (Well, Almost)

I caught the stomach thing. It hit me during dinner Sunday night at the Japanese hibachi. Enough said.

I lost most of yesterday to a hotel bed and room darkening shades. Jeff had to attend conference sessions, but Justin was happy watching movies.

I came back to life early evening and we made it out to Disney Springs for dinner and goofing around in the shops.

So I can barely think about eating and what do Jeff and Justin choose for dinner? Seafood. I had Coke and a dinner roll. This is love, people.

Day 635

 

Justin has a lifetime membership to Give Kids the World Village, where we went, in May, for his Make A Wish trip. Our hotel is about fifteen minutes from the village. Justin fondly remembered the breakfast buffet (of all things)  as we came through the Orlando airport and he said it was like “retracing our steps for my wish trip.”

So we went. We had breakfast and “visited” Justin’s star which will hang “forever” among 140,000 others in the “galaxy of hope.”

Justin and I spent the rest of the day here at the pool while Jeff did some obligatory meet and greet stuff. We made a lovely new friend, from Texas, who said “praise God” concerning her family’s survival of the recent hurricane. Indeed.