26 When looking well isn’t enough

Backstory – We briefly mentioned the new spleen growth in our last post but didn’t go into much detail, as the focus then was on how we managed to process difficult news and still carry on with our plans for the day. What actually happened was that we were unexpectedly told Mason might have another growth, in his spleen, something that had probably been there for some time. The news came as a real shock, especially as it was only discovered during a random peer review of patient files. At that stage, the only option given to us was to wait for follow-up scans every three months to see if there were any significant changes.

April 2025 - Mason’s Easter scans are now complete, and we’ve been reassured that his spleen looks positive, with nothing concerning at this stage. It has been five months since we first received the news of a potential new growth, and while progress feels slow, the weight of uncertainty remains heavy on our shoulders. The reality is that something is present in his spleen, but no one can say for certain what it is. The only way to know for sure would be through a biopsy and physical examination, though we’ve been told this would only ever be considered as a last resort because of the spleen’s delicate structure and high vascularity.

The spleen, a fist-sized organ under the left ribs, filters blood by removing old cells, helps fight infection by making white blood cells and antibodies, and stores extra blood for emergencies. You can live without it, but infection risk rises, so vaccines or medication are needed. After removal, the liver and bone marrow take over filtering, while the immune system still functions but is less effective against certain bacteria.

July 2025

PET scan results are in, and there has been a noticeable step change in the growth. We have now jumped to discussions with specialists and surgeons about the potential for Mason to lose his spleen, which would mean he might require lifelong medication. The growth is slow but continues to get bigger. Mason’s blood tests are clear, and the PET scan shows no activity, he is well in himself, which is very reassuring.

The nature of the growth can only be confirmed by surgical removal and examination of the tissue. Once this is done, we will know what we are dealing with and can develop an appropriate plan moving forward.

A simple biopsy of the spleen is not an option due to the high risks involved. Partial removal of the spleen is technically possible, but most surgeons are uncomfortable performing it because of the risk of severe bleeding. Complete spleen removal is currently the only potential course of action, though will be confirmed after one more scan review.

...In the meantime, we focus on keeping Mason as healthy and active as possible. As parents, we continually research ways to support his health in practical, everyday ways, while also minimizing anything that could work against him. Our main priorities are keeping him active, removing ultra-processed and acidic foods from his diet, and moving towards an anti-inflammatory, alkaline-leaning approach. We also pay close attention to his sleep and rest, which he gets plenty of.

Much of this feels subjective, we often just ‘think’ we’re doing the right thing, so we've chosen a private, child-friendly microbiome test. Using metagenomics, to provide a detailed picture of the microbial species in Mason’s gut. This is especially important after chemotherapy, which can disrupt the microbiome and impact immunity, inflammation, and overall health. By spotting any imbalances, we can adjust Mason’s diet and lifestyle to support his long-term health and help his immune system, which is especially important for his spleen. Disruptions in the gut microbiome don’t directly “cause lesions” in the spleen, but they can influence immune function in ways that may indirectly affect the spleen.

If any fellow pediatric oncology parents have tried this option, we’d love to hear whether you found it helpful.

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These proactive steps take their toll, not just financially, but also emotionally and in the time they demand. They are expensive, and there’s no guarantee they will make a difference. Post-cancer care often carries these hidden burdens: we have everything to lose and only a small chance of gain, yet we do it because every possible advantage counts.

Healthy on the outside, fighting battles no one sees