The second installment in Jodi’s series:
I didn’t have a close relationship with my mother while she was living; in fact, when I was in my early twenties and away in the Navy, I rarely saw her. In my time away from my family, I was experiencing some major changes, not the least of which was that I met and fell in love with a woman for the first time. Because I was in the military and it was the early nineties, Don’t Ask, Don’t Tell was law of the land, and so no one knew about my relationship with this woman. My silence was mandatory. After 18 months out of the country, I finally went home carrying this huge secret I wasn’t sure what to do with, but I really wasn’t ready to come out to my family. Anyway, one day I was sitting on the porch with my mom smoking a cigarette and complaining about an old friend of mine who seemed to have given up her identity since her marriage to a less-than-honorable guy. In the middle of my rant, my mom turned to me and asked “Are you trying to tell me you’re gay?”
I couldn’t speak. How could she have known that? I wasn’t even talking about myself. What did she know? She hadn’t seen me in well over a year, and I hadn’t said anything very revealing, had I? After some delay and procrastination, I finally replied “Well, I’m not sure if that’s true or not yet. I’m not ready to say.” That was some pretty weak tea, but it got her to stop talking about it at least. The point is that moms know stuff. They just do. My mom wasn’t at all plugged into my life, and yet she unearthed the biggest secret I had. Moms get feelings, premonitions, and possess Jedi-like abilities to sense when something is wrong with their children. This is a universal truth. Ask anyone. Moms just know. Even if they never say anything to anyone, they carry an extraordinary ability to see inside their children.
When it comes to Caemon’s leukemia, I possessed no such ability, not before his diagnosis, not during his treatment, and certainly not in regards to how everything would eventually unfold.
He was sick a lot, of that I have already written, but in hindsight, there were other signs, physical signs that something was amiss with him, signs that we missed. Leukemia has two tell-tale markers that only a CBC can detect: high white blood cell counts and low platelets. A child with low platelets has a greater risk of dangerous bleeding and bruises easily. I noticed at the beginning of last summer when we began dressing Caemon in shorts that he had a lot of bruises on his legs—bruises that never seemed to heal. I remember being curious about them because he was more bruised than when he was an early walker and fell frequently. His Grandmother called them his “little kid legs” and his pediatrician commented that this is what little boys looked like. Except that Caemon wasn’t at all a physical kid. He didn’t jump off the furniture or bang into things. He was cautious and avoided injury, but there he was banged up worse than a hockey player.
Another sign of low platelets is a skin condition called petechiae. Basically it’s when the capillaries burst beneath the skin and create little purple pin pricks. This happened to Caemon when he would cry really hard or have a tantrum. We honestly thought this was happening to him because he was fair skinned and pale, but it would clear up in a few days and we would forget about it. But his low platelets would continue to haunt him throughout his illness, creating problems with his treatment and requiring nearly a hundred transfusions to keep him safe. I remember a nurse running from the pharmacy with a bag of platelets in her hand while Caemon was coding on his last morning. When he died, his platelets were so low that he was bleeding in his lungs and covered from head to toe in petechiae, so much so as to make him nearly unrecognizable.
Caemon also snored like a large man and had sleep apnea, another topic of discussion we had with his pediatrician prior to his diagnosis. He had enlarged tonsils, something we had inquired about at least a dozen times with no satisfactory answers. After much prodding, we finally got a referral to an ENT specialist to provide answers. That was the week before his initial diagnosis.
The snoring, the bruising, the petechiae, the illnesses, they were all there. And while Timaree and I were busy planning camping trips and birthday parties, making arrangements for him to attend preschool, he was a very sick child, and we didn’t know. We really didn’t. I admit I was frustrated at how often he got sick and how easily it seemed to occur, but I wasn’t panicked. I didn’t feel that deep sense that something was wrong. That ability that moms have to sense danger around their children was lacking in me.
Until one day: August 20th, 2012. Caemon had been sick, wasn’t eating, and had severe diarrhea that required diaper changes every hour or so for a couple of days. I called the advice nurse at his doctors’ office who told me just to feed him yogurt and not to take him off the antibiotics he had been prescribed for his latest ear infection. I demanded an appointment with the first available doctor, who wasn’t Caemon’s regular pediatrician. I wanted him seen.
Later that day, we were rushing him to the emergency room, and within a few hours, he and Timaree were headed to UCSF in an ambulance. He was that sick. Two days later, he was in the ICU and his oncologist announced to us that not only did he have leukemia; he had the monster of all leukemias.
One cannot imagine what this news is like, and I will probably never be able to explain it adequately, but I know that when he was taken in for his first bone marrow biopsy, Timaree and I were crumpled on the floor of his hospital room wailing, clinging to each other. There’s a self-protective mechanism that kicks in and tries to deny it, rationalizing that some huge error has been made and pretty soon someone will walk through the door and say, “We were wrong; it’s just a virus. Here’s your prescription. You can go home now.” But the doctors, the teams of people surrounding his bed day and night, they wouldn’t allow us to go home or tell us it was all a big mistake; no, in fact, every time they offered us a chair or brought us to a sit-down, his prognosis was worse. The heightened anxiety and fierce urgency around his diagnosis and treatment did not sharpen my ability to sense what would happen next. If anything, I entered a world of myopic intensity focused only on what was directly in front of me, which was the object of my most tender, exquisite love and how to hold it up with all my strength.
8 thoughts on “moms just know, right?”
I didn’t know Monkey was sick either, although for us there really were no symptoms. But even at 3am when he had been screaming all night, I didn’t think anything was that wrong – after all, it was only gastro. We actually rang a helpline for advice, and it was them who told us to take him to the ER.
Now that Monkey is in remission, I still don’t know. We’ve just hit tantrums, and its such a sudden change that Hubs is worried it is the cancer coming back. If Monkey is really tired one day, Hubs thinks its cancer. I am in strong denial and think it’s all just normal toddler behavior (his next MRI in just over a week will tell us). Because I DON’T KNOW. That instinct wasn’t there for me either. The day before I would have told you there was nothing wrong with him.
Um. Way to make your beautiful post all about me. Sorry about that.
It’s so unfair that mothers are supposed to have this intuition, and yet it fails us when we need it most.
Thank you so much for sharing this story and this series about Caemon’s illness onset. I feel really unqualified to comment but I have to say that I admire what I sense is your lack of blame about this. Maybe I am wrong. I feel like I would be looking for someone to blame. Because we are not doctors and we aren’t supposed to know. We are learning as we go along. We don’t know what is “normal” toddler behavior or signs and symptoms because we have not had one before – unless we have been around lots of kids, which I know I haven’t.
I know that your grace and devotion to Caemon impresses and inspires me. you focused on the moments as they came along and you might call that myopic but I call it doing what you needed to do as a family and for Caemon to focus on the here and now. You have my deepest sympathy and admiration. I know that in these most awful circumstances people say, “I am not special or amazing, I am just trying to survive.” And of course you are too. But you and T and Caemon have shared something extremely beautiful with the world, and that is inspiring and heartening.
Sometimes denial (or some form of it) is the only thing that can save us! It can be a gift in disguise! Put the baseball bat down… you know, the one you keep pounding yourself over the head with!! You are fantastic, loving and intuitive moms… no mom, in her most intuitive moment, could have any sense of what cancer was doing or going to do to you or the life of your son. I LOVE that you two held onto HOPE in every moment… now THAT is something only a mom can do! Sending you love!
what a wonderfully written entry- I think the questions you ponder are things we have all wondered at some point. But I have to believe, that we all do the best we can with the information we have. It’s all we can do as parents. While I can not imagine all you have been through – you have done your best each step of the way. Thank you for sharing your story.
I don’t think any parent ever really suspects something like leukemia. We’re told our kids will get sick a lot, and in truth, they do…and that’s pretty normal. Our son’s legs are covered in bruises right now, too. I just take it as par for the course, as you did. We have to hope and believe that everything will be ok with them. And then sometimes, it’s just not. I know there will always be these questions nagging you, but you really couldn’t have known. And in a way, I’m glad you got to enjoy your son as much as you did without knowing what would happen. What an incredible load to have to bear, and you certainly beared your part of it.
You advocated for him at every step even if you didn’t know. I think a mother’s instinct is just loving, educated guessing and how could you ever have guessed he was so sick? Your series is really painful and beautiful. Thank you for sharing.
No, mothers can not always see the signs. Nor can a loving spouse of a more than 30 year relationship. And we spend years wondering why couldn’t we see what was right there to be seen. I think on some level we know how bad it is and that there is nothing we can do to stop it. If we don’t see it, then it doesn’t exist. This blindness does not make us bad mothers or spouses. It just shows that we are human.
When my kids were young, I used to blame myself for not intuitively knowing if something was wrong with them. I think the mother’s intuition thing is overstated — sometimes it works, sometimes not. With a first child, every experience is new, so you can’t know what’s normal and what’s not. Yet you DID question why he had symptoms, and your pediatrician told you nothing was wrong. Physicians also need intuition, and sometimes they don’t have it, or don’t listen to it.
I’ve found that over the years, I’ve gotten more sensitive to my intuition, better able to tune into it and also more aware when a thought is not just a thought, but an intuition and I should act on it. This is just part of living, and serves me in every aspect of life. Too late for my children, alas, to benefit!
Because you were told so often to ignore his symptoms, you ignored your intuition until the evidence that he was sick was so powerful that you HAD to believe it, and so overrode the professional advice you got and demanded he get medical attention. There’s nothing wrong with your intuition or your care of your son. You’re a good mother, and a courageous mother — and that’s what our children need us to be.
Sending you love.