What news?

It has been a long time since we have posted any updates about how Salome and our family are doing. That prolonged pause in hearing from us represents a couple things (all positive!).

First, no news is very good news.  Salome has been doing so fantastic from a health standpoint. She has met all the benchmarks her doctors wanted to see as her body recovered from the aggressive chemotherapeutic poison she was subjected to. Her bone marrow restarted slowly, but within the expected timeframe and the remainder of her labs have slowly, but surely, normalized.

The second reason for our silence has been the delicious and slow healing of simply being together. Our lives were turned inside-out November 2021 when we received her cancer diagnosis. The chaos and turmoil of parenting a child with a life-threatening illness was so taxing on Melissa and I. We never want to neglect the reality, though, that our entire family carried the weight of that process. It is rather as if Melissa and I were the prow of our family’s ship, the strong leading edge that the waves broke against and parted. Salome was the cargo we carried, and every other member of the family formed the body and ballast of our vessel. We are so, so very glad to be in port now and out of the storms.

This past, calmer season has given us time to reflect back and to re-calibrate our lives a little bit. Each family member paid a high price in order to accomplish our support and care for Salome. Now, we are quietly reveling in the mundane aspects of family life re-sorting itself. Quiet and normalcy have been healing balms that I can see reflected in myself as well as each of the kids. We celebrated Christmas and the winter solstice in our own home last month, all of us together. Resetting our family’s holiday habits and traditions into their familiar place helped me realize how stressful last year’s holidays really were. Today we are celebrating another milestone, Salome’s fourth birthday! Our whole family is home and spending time together as we celebrate what a big girl she is now.

Merging

Our last update was August 4th, when Salome rang the bell at the oncology clinic to signal the end of her active chemo treatments. That feels like an entire lifetime ago!

For Salome, life has been a steady merge back into “normal.” Her immune system is fully back online and we have weathered several viral colds without any major challenges. She now is able to follow her big sisters around and do reasonably anything a 4-year old would. She can jump on the trampoline (without worry about bruises from her low platelets), she can run down the street (without us worrying about scraped knees leading to hospitalization), she can soak in a bathtub (now that her central line “buddy” for chemo is removed). Her hair is growing out and it delights her whenever the growth catches her attention.

Next steps

Salome has finished all of her treatments and has been in remission since round one of her chemotherapy. She is not considered cured, though, still. Her cancer lost the battle and has shown neither hide nor hair since the beginning of her chemo journey. She will continue to be watched very closely for a long time for any signs of the cancer making a re-appearance.

Practically that looks like continued periodic screening labs at the oncology clinic. Since her “buddy” has been removed, she has to get blood drawn by needle every time she is due for a lab. I continue to be absolutely astounded at this big-little girl’s resilience and bravery ever time she has blood work. There are tears, to be sure, but I’ll be darned if she doesn’t square those diminutive, powerful shoulders and face down her fears, time after time. I could not be more impressed by her or more amazed at what she’s navigated in her lifetime. It is no lie to say that I have been humbled and taught many things about courage by my daughter.

The frequency of those labs will slowly space out over the course of the next 4 years as her chances of relapse continue to diminish. One day, we will hit the magic date and cross the epic finish line (we don't actually have a concrete date for this, yet). After that point it’s a statistical near impossibility that her leukemia will ever crop up again. When she gets to that point she will medically be considered cured. No more blood draws, no more oncology visits. She will just have a couple small scars that she can tell the story of or keep to herself as she sees fit. I suspect she will “win” that party game where you share two made up things about yourself and one true, but fantastical, fact. It is still so surreal to me that she had leukemia.

Grateful

Our entire family remains so grateful that so many of you have followed along our journey, cheered for Salome and supported our family. We have been propped up, encouraged, and met in our need so many times by you all. Once again, thank you.

I will close with the same words Melissa wrote last August: Hug your loved ones today, friends. If you can, let gratitude for their presence be felt. We are soaking in the joy of these accumulating moments.