Jax’s brain tumor is a cloud in our otherwise bright and sunny sky.
Just before the diagnosis, the fear surrounding Jax’s prematurity was starting to fade away. We we comfortable with our new normal of raising a kid with Chronic Lung Disease. The medical life of weekly appointments and therapies was slowing down. We were crossing specialists off our list like it was no big deal. Jax started daycare and I made plans to go back to work part-time.
We were so close to being able to live a life that did not include hospitals and doctors and surgeries.
We started thinking about what it would be like when Jax started preschool in the fall. I imagined him wearing his new monkey backpack, proud and happy, as he walked through the big school doors. I saw him making new friends. I imagined what he would be like as a young man. I saw him at prom and walking across the stage to receive his diploma. I imagined what it would be like to see him walk down the aisle to marry his partner; I could be a grandma some day!
I was finally at a place where I could allow myself to imagine my son’s future. After all, thinking about the future is a scary thing to do when your baby is given only a 4% chance of healthy survival at birth or when doctors tell you that your son probably won’t be able to walk or talk.
Then they found a brain tumor.
And there I was again: afraid to imagine my son’s future.
During the appointment last week, I finally got up the nerve to ask the big question. It’s a question that (obviously) has been on my mind since the diagnosis. When I heard the words “low-grade” and “most likely benign” I thought we were in the clear.
So when, I asked the doctor “Does Jax have cancer?,” I did not expect her to say yes.
She said that essentially any abnormal cells in the brain are considered cancer, especially when they are in a hard-to-reach area like Jax’s tumor. Luckily, Jax’s tumor is slow-growing and not aggressive. It is most likely a benign tumor, which means it probably won’t spread to other areas. (We don’t know that for sure, though, because we have not done a biopsy.) She said the tumor was “benign by pathology but malignant by location.”
She said my child had brain cancer.
The tumor is no different than it was before so it’s all a matter of semantics. But hearing the word “cancer” when in reference to my child’s brain? Well, that’s a bit bigger cloud in my otherwise sunny sky…
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An Early Start 
I’m so sorry you have to go through this. I would feel just like you if they told me my child had cancer. How do you deal with that? I know you’ll get through this. Jax will get through this. Keeping you in my prayers. Continue staying strong!
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Thank you for your positivity and support!
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You’re very welcome. 🙂
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This sent chills through me, a pain in my heart, and tears to my eyes. I know what you mean when you say that you FINALLY started to allow yourself, gave permission to yourself, to imagine your sons future, a normalcy many take for granted. It requires a letting go and a faith deeper than any I know of to go THERE. A normal, healthy future, for your family, peace for once. I am big on words and they matter. I can’t imagine how wrenching it was to hear her confirm that it is “brain cancer” albeit the best possible kind at this point. It’s still awful and confusing and painful. Wishing you continued strength, healing, patience, and wisdom.
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Thanks for your understanding, Shoshana! You get it. I’m still looking forward to our coffee date!! It will be good to catch up – so much has happened for our super boys since the last time we were able to get together!
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( hugs) for different things but in the same area of the head, i recently had a discussion of semantics about Sam’s brain. Always keeping your family in my thoughts
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When you’re talking about brain stuff, I do not think there is an easy way out – it’s all scary! I’m glad you were able to get some answers about Sam – at least it’s a step forward, right? Sending love back your way!
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This popped into my head when I read your post. Hugs to all of you. Semantics suck. Cancer sucks. Damn. Damn damn. Jax is awesome – he won’t let semantics stand in his way!! The sun will break through those clouds and I hope you are able to bask in it for some peaceful moments. Peace my dear friend.
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Right?! DAMN! The video made me laugh – thanks!
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I cannot even imagine the heartache/fear you live with. I was a single mom of three healthy boys and I thought I had it hard, I now know what hard really is! I admire you and other parents that have a daily uncertainty with the health issues that come with a preemie child! God Bless You All! I have a photo of you and your beautiful family on my desk and pray every day for you and your family! As always, thank you for sharing your family with us! Love, Teresa
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Awwww – Teresa! I miss you! Thank you for all of your kind words and support. XOXOXO
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How hard this must be, especially with how far his health has advanced. I can only hope you can remain positive and take each day as a blessing. That is truly what this wonderful little boy is!
Love and understanding…
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We have so much to be grateful for, that is for sure. We are doing the best we can to focus on the positives – some days it is easier to do than others!
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