What does it mean to be strong?

I have thought about this question off and on for a long time. There are a couple definitions I found that apply here:

1. the capacity of an object or substance to withstand great force or pressure

2. the emotional or mental qualities necessary in dealing with situations or events that are distressing or difficult

My own definition, though, would be: doing something when you are too weak to do it or the way forward seems impossible.

This has been one of the most difficult weeks of this journey so far. By the time we finished our trip to Houston and Louisiana, Eli had increased pain and bumps in various locations of his body. It was obvious that the T cells weren’t having the effect we had hoped for. The plan was to do scans, then start chemo, which could be more effective after Car T therapy.

The day before his PET/CT, I had noticed that Eli’s breathing was labored and rapid. I checked his O2 saturation, which was mediocre, but stable, so I sent an email to our team about it and waited until the next day to deal with it so we wouldn’t have a sleepless night in the emergency department.

Tuesday, July 27, we went in first thing for scans. His respiration wasn’t great, so they put him on oxygen. After I expressed my concerns, they had me bring him to the clinic after his scans to meet with the doctor. I knew that the cancer was growing and spreading, but what the CT showed was worse than I feared. His entire right lung was collapsed due to fluid buildup in the pleural space.

His left lung had a partial pleural effusion, so he was breathing with 2/3 of one lung. His trachea was deviated, due to tumor growth, and he had large masses in his abdomen and chest, in addition to smaller masses in many areas of his body.

We were told that he has maybe a few weeks or 1-2 months left to live and that doing the chemo we had planned would likely shorten his lifespan rather than prolong it.

Adam  and I told Eli. He cried and said repeatedly, “I’m sorry. I’m sorry you have to go through this.” Then he said “I love you Mom. You’ve got this.”

I don’t got this, but what other choice is there?

We chose to postpone hospice so that we could radiate spots causing him pain and the fluid buildup. A procedure has been done to insert a drain in his chest so lung function and comfort can be restored. The drain will remain in place and we will continue to drain fluid periodically each day as long as excess fluid continues to be generated or until Eli tires if having it.

Flowers given to me by Kammie, a kind staff member, while I waited for Eli’s chest drain placement
Eli’s chest drain placement was successful.
Eli’s appetite returned after over 2 liters of fluid was drained from around his lung (only about 1/3 of the estimated amount of fluid).

We will also start him on a lightweight chemo after a week of radiation. Hopefully the infused T cells will help make the chemo more effective and the combination will bring stability to Eli’s condition.

Ella and Eli

I, of course, hope that the things we are doing will enable his condition to improve enough that we can revisit our original chemo treatment plan later, but this may not be possible. In the meantime, we are making adjustments for this next phase of our journey and I continue to appreciate the lyrics of this song that Eli’s sister Ella learned on the piano:

Peace in Christ

There is peace in Christ
When we learn of Him
Feel the love He felt for us
When He bore our sins

Listen to His words
Let them come alive
If we know Him as He is
There is peace in Christ

He gives us hope
When hope is gone
He gives us strength
When we can’t go on
He gives us shelter
In the storms of life
When there’s no peace on Earth
There is peace in Christ

There is peace in Christ
When we walk with him
Through the streets of Galilee to Jerusalem
Mend the broken hearts
Dry the tear-filled eyes
When we live the way He lives
There is peace in Christ

He gives us hope
When hope is gone
He gives us strength
When we can’t go on
He gives us shelter
In the storms of life
When there’s no peace on Earth
There is peace in Christ

Source: Musixmatch Songwriters: Nik Day

11 thoughts on “What does it mean to be strong?

  1. Janice Robinson

    Your definition of strength is spot on. My heart aches for your family in this extremely difficult time. We continually pray for you all and know that this is all in God’s hands. Thanks for so eloquently keeping us updated and for your expressions of faith. We love you guys!

    Liked by 1 person

  2. Nancy Trythall

    Dear Elaine, I’m so sad about this but I am profoundly grateful for the amazing care you have given Eli for so long and for his incredible ability to faithfully cope with all he has gone through. You all have been faithful and righteous examples to so many. I am proud of you and feel you deserve an honorary doctor’s degree and a reserved spot in Heaven (it goes without saying that Eli does too). We will continue praying for all of you and recognize Eli is in the Lord’s hand. I love you! Nancy

    Liked by 1 person

  3. Mary Manzer

    Elaine, words won’t come to my mind. I am so very sad for your whole family. You have been an amazing source of strength to Eli throughout all of this. He is an amazing boy. I am so glad I got to get to know him through your updates. I am so very sorry he has had to go through this.
    Love to you l, Adam, your children and especially to Brave Eli!

    Liked by 1 person

  4. Sharon Pacheco

    What a sweet spirit you have been blessed to associate with. Our thoughts and prayers are with you all! May each of you feel the presence of guarding angels, see miracles, witness love and be upheld always in your continued progress! Love is the only answer I know!

    Liked by 1 person

  5. Rebekah Morrill

    We feel so blessed to know Eli and are beyond lucky to be his neighbors and friends. He has always been, and continues to be, a bright spot in our lives. We love his fun-loving nature, his creativity, his endless curiosity, his strength, his example. And we just love being around him! I wish so much your family didn’t have to go through this, that it would all just go away, but I’m comforted to know the Comforter will be with you and that God is in charge. You are in our prayers always!

    Liked by 1 person

  6. Deanna G Weiss

    What faith and spiritual strength you and your son have shown to us all. God’s blessings to you and your family. He is a loving Heavenly Father and I am so grateful of the beautiful plan He has for us all. Sister Deanna Weiss.

    Liked by 1 person

  7. Mica

    Oh, sweet Eli!! 🥰 You guys are SO strong… and yet you are right, He gives us strength when we can’t go on. God knows you can do this. All of you. But when you feel like you can’t, know you have an army of angels visible and invisible here to help you too! We are crying with you, praying with you, & here for you if you need anything.🙏🏼💕

    Liked by 1 person

  8. Alena

    I didn’t get the chance to share my testimony in church today, but if I had it would have gone something like this: I appreciated Eli’s example today while passing the sacrament, and all of the testimonies about enduring and persevering and trusting God. The deacons and priests do a great job fulfilling their Priesthood responsibilities, which opens up the doors for the rest of us – men and women – to be administered to by angels. I think we all felt that angelic ministry in some way today by watching Eli focus on doing what he can still do to serve those around him, as hard as that may have been from a wheelchair and in his current condition. It reminds me of a couple of things: first, that hard times are better endured by focusing outside of ourselves; and second, that continuing to focus on what we can do, rather than dwelling on what we cannot, is what enduring to the end is all about. The most heartfelt prayers often come from wishing we could do more and be more, of course; and it is important to acknowledge those righteous desires of our hearts. But the powers of heaven are apologetically ours when we use our energy to do what we can – big or small – in God’s name. So, thank you to Eli and the Augustine family. You are a great blessing to us all, and our prayers are with you. ❤ What a cleansing and humbling sacrament meeting that was for me. Angels, most certainly, are in your presence.

    Liked by 1 person

  9. Alain in France

    These latest news make me so sad I shed a tear… I had hoped so much that this clinical trial would do wonders, and the previous messages sounded so positive. It was especially emotional to watch the Youtube video of Eli chatting and joking with the medical staff.
    Strong… well Eli is strong for sure, far beyond what could be imagined. So are you and the whole family. I know that your faith helps a lot. Again, I’m not much of a believer myself, but I admire what it gives you all.

    Liked by 1 person

    1. We had hoped for better results from the trial. I was unprepared for such a quick change in his condition the last couple weeks. Yes, my faith does help a lot and provides so many answers to questions, but still leaves some to be answered in the future.

      Like

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