Uncategorized – Page 18 – CHASE AWAY CANCER

It’s Only A Side Effect

The pieces lie in our hands…

We’ve talked about this. We are the lucky ones…the ones still breathing.

The pieces are broken and jagged, like a shattered vase, but…he lives.

Many are the times we’ve cried out for wisdom and wandered the farthest regions of our motives in search of the right and wrong in saving treatments that cause great damage. And we’ve steeled our hearts that if our hope comes true – if, by some means, some day, better cures are found – they will have passed too late for Chase. The seeds of damage were sewn when we opted to save his life. We ask ourselves almost every day… are we ready for this? …whatever this looks like? …the fruit of our decisions?

Absolutely not. By grace alone, we stand.

Would we go back?

Absolutely not. Ready or not; no regrets. The pieces are jagged and some are ugly and sad, but we’ve steeled our hearts and have set to fixing the vessel and it never ceases to amaze us how much beauty there can be around the broken.

On Wednesday, we heard our very good news, but that was not the only appointment we had. We also sat with another doctor. One who monitors things like growth, organs and hormones. Chase lay flat and still while she measured and he held his arms out like a bird while she measured more and he stayed patient as she checked everything and we talked family history back into the generations.

Even though his weight is in keeping with other children his age, it’s starting to show already: Chase’s height is having trouble keeping up. His tiny black dot was still on the growth charts before our eyes, but just barely…like someone clinging to a precipice by their fingertips. How much longer until it falls off completely? Nobody knows.

The consultation came down to blood for now. Tests and blood. More decisions will come in the next year or two. Decisions that bring with them risk of secondary cancer. This is the cost of trying to grow up when your spine was radiated.

Our hearts are heavy with these things some days, still, even in the heaviest of moments; no regrets. We set to mending the pieces because it’s only a side effect and some day, Chase will be better than better. He will be perfect. In the meantime, we’ll use the pieces to reflect the light.

Moment by moment.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. 1 Corinthians 13:12

And he who was seated on the throne said, “Behold, I am making all things new.” Revelation 21:5a

The Caregiver’s Perspective

Speaking as the primary caregiver of a brain tumor patient who is technically classified as “terminally ill“, my life has more sad moments and nightmare scenarios than you can imagine. …And I wouldn’t trade any of it for all of the moments I have with Chase – even on his worst days. Life is unspeakably precious and you cannot imagine beforehand the beauty and refining to be found in painful life and the living of it, can you?

My life has greater purpose and meaning because I’m caregiver to a terminally ill patient. I grow and am strengthened when I suffer with him and learn to love the way he’s changed. I literally cannot imagine having the decision to walk this road with Chase taken from me to keep me from pain and bad memories. At the moment of diagnosis, it’s already too late.

The redemption comes in walking the road…the whole road.

Moment by moment.

“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

Of Independence, Never Graduating, And Needing An Apron

For months, I’ve been searching for the words to adequately, appropriately share what has been a significant chapter for our family: selling our condo and buying a house. It has been an up-and-down, stressful, crazy, unbelievable journey that has pushed us to the edge of what we thought we were capable of handling again and again. More than once, I’ve come to the computer and searched for the right words and a way (any way) to organize my thoughts. Today, I rediscovered these paragraphs that I’d scribbled down about two months ago when the condo finally sold. It sold and I felt released in my words and thoughts. Within four weeks of that time, we’d close on our first house, and within 24 hours of closing, I’d get the call about Chase’s MRI, proving yet again that there is no time when we reach a place of independence…

The post I’ve been wanting to write just hasn’t been formulating properly for some time. Mental distractions abound: children crying and always needing, the friend having surgery, the cancer child friend of Chase’s that’s been rushed to the hospital after a 45 minute seizure, the therapy appointments and radiation follow ups and the text from my spouse saying he almost ran out of gas on the way to work.

The thought of Susanna Wesley putting her apron over her head for a moment of prayer begins to sound better and better. If only I could find my apron…

And the crazy irony of a week like this is that I’ve walked the halls of hospitals and begged God to spare my son’s life.

I’ve come to realize in the last several months that I expected to “graduate” the trial of brain cancer treatment at a “brain cancer level” of trust in the sovereignty of God, and yet, here I am, yet again, throwing my hands in the air over so many things that I can’t control – and feeling hard-hearted and bitter that God won’t let me control them in the ways I see fit and then move past them forever and check them neatly off my life list as accomplished.

There is no graduation. There is no time when we reach independence. Just because we went through a hard thing and survived does not mean that it won’t be equally hard the next time we’re faced with it. In fact, it may very well be more hard the next time. We will never reach a moment when we aren’t in desperate need of salvation and grace.

When the house you thought you sold is going back on the market again, or the house you’ve wanted to put an offer on gets further away and more inaccessible, and the summer lags and there are no answers for Fall and school… somehow, at times, those are the days when it’s shamefully harder to cope than the cancer days. How do the little things hurt worse than the big ones? Salvation. Grace.

For there is no time when we reach independence.

Thank you, Lord.

Moment by moment.

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?” Matthew 6:25-27

Chase’s Best Shot

I’ve recently been on a slight writing hiatus. To quote someone I spoke to recently: “That’s good because it means there’s nothing new to write about, right?” …well, almost. 🙂

In truth, my most recent time for writing led to a synopsis of Chase’s story – which was published on a different blog. I had the honor of being able to share Chase’s story and stats with the St. Baldrick’s Foundation and having it be published on their blog!

If you have never read the story, or if you’d like to read it again, please click: “Chase’s Best Shot“.

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago. — Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago.

~MbM~

EEG Update

We received a call yesterday about the EEG results. In almost eight hours of monitoring, they weren’t able to capture a single seizure. This is a HUGE praise!

Despite this really great piece of news, Chase’s EEG is still “abnormal”. The person I spoke with said that some of that is to be expected as parts of Chase’s brain were removed in surgery – because of this, his brain will always read “abnormal” these types of tests. However, there may be an aspect of the results that cannot be attributed to previous brain trauma. This is the part that was unclear. We have been told that this will be something to discuss in further detail with the specialist at our meeting in about three weeks.

We are so thrilled that there were no seizures, but I spent a good part of yesterday afternoon just working through the word “abnormal“. As I’ve recently written, this concept of “normal, but not“, has been a difficult paradigm to optimize. Hearing the word “abnormal” yesterday afternoon just brought back all the questions and many of the frustrations.

We look forward with hope to this meeting in a few weeks and acknowledge that there is never a time that we’re not in desperate need of moment by moment grace.

And Chase is always and forever Chase – about once a day, he turns to us and says “Hey! Remember the stickers on my head? I did that the other day and I was so, so, so brave!”

~MbM~

Chase and Aidan after walking with St. Baldrick's in Saturday's parade — Chase and Aidan after walking with St. Baldrick’s in Saturday’s parade