Autoinflammatory Mom: A Letter to my former self

For anyone who has experienced the trauma of a natural disaster, I can imagine that the moment when it’s over and you look up at your world in shambles is a lot like how we felt after our child’s first hospital admission.

I remember our trip to Sick Kids hospital with our son like it was yesterday. We still didn’t know or understand what was wrong with our child; just that he has a rare unknown autoinflammatory disease that was attacking his body. We had spent hours laying next to our child as he screamed in pain from fevers, joint pain, poke after poke of blood work, IVs, and treatment; as a whirlwind of doctors and nurses came in to see the mystery child. I remember the “Hail Mary” treatment that he was given in the hopes that it would reverse the Macrophage Activation Syndrome ravaging his body. I remember the brief moment of relief when it worked, and then the blur of practising injections on an orange while the kindest male nurse showed us how to steady our shaking hands while we prepared to inject our young child everyday for the rest of his life.

“We need to apply for approval for this medication,” the doctor said. “It’s expensive, so we have to hope that your insurance will cover it. If not, we can apply for patient support.”

I remember nodding as if that was the most logical thing he’d said. Did I comprehend it?

I think so?

But I felt so numb that I wasn’t sure—except that he used words like needs approval. My mind raced with feelings like, how can someone else decide whether to approve a treatment that is keeping my son alive? I really didn’t understand what to do next.

What I did know was that the period of time that I had just witnessed where I stood back and observed my child’s care was over.

It was the moment I became his caregiver.

It was overwhelming. Where do I start? Who do I talk to? How do I get this approved—this treatment that was (and is) keeping my child alive?

I have done this for 6 years and it now seems like second nature, but I know that it didn’t start out that way. So I wanted to share my experience with you all.

Because if I could go back, this is what I would have wished someone had said to me.

This is my letter to myself, 6 years ago.

Dear Chris,

Momma, I know you are terrified; that everything you imagined for your child’s future feels like it’s in pieces on the floor. That you are carrying a weight on your shoulders that most will never understand.

It’s ok to feel scared. It’s ok to cry and feel lost—to feel that weight.

But don’t you ever forget: you’re strong, and you got this. Your child will thrive because of you and the team of people standing in the room around you right now.

I know you feel alone, but you aren’t.

That nurse with the clipboard standing in the doorway, with papers for you to sign? That’s just one paper she brought into the room—but her desk has a pile high where she is pulling things together for your child. That doctor who seems like a blurr in a white trench coat followed by a tiny crowd of medical trainees all examining your family? That doctor will stay up late in the night documenting your child’s health journey and writing letter after letter to ensure YOUR child’s medication will be approved. They will come back later with colleagues. They will discuss your child’s health in length for hours. They will miss lunches, and may sometimes stay late to sit with you and answer as many of your questions as they can.

And the drug company that has your child’s liquid gold? They have a patient support program employee who will call you, who will make sure you have support at home to properly administer your child’s medication. They will get on the phone with you and the insurance companies and Ontario Health and whoever else they need to to ensure your child has their medication. Their delivery men have driven through the night—through snowstorms. They will absorb portions of the cost to make sure your little one is going to be ok. All these people are here to help.

As intimidating as the next steps may seem, you will do this.

It won’t be easy; the journey isn’t over. In fact, it’s just beginning. You and your team may not always agree—and sometimes you will have to speak out, and up, and ask questions. But your strength will surprise you! You may not believe it now but superheroes are genetic, and your child is a superhero. So what does this say about you?

Here’s how to take your next steps:

  • Wait for clinic team instructions. This is hard, because you’re scared and it doesn’t seem like you have time when you’re worried about your child but your clinic team will make sure you have what you need when you need it. Just keep asking questions—that’s ok.
  • The medical team will bring you papers to sign. They may ask you for insurance information. You may need to talk to the insurance company to find out about pre-approval, but the doctor will send a letter to them. You just need to wait to find out if it will be approved.
  • You will get a call from the drug company’s support program. They will help guide you through the paperwork, who to call and how to access your child’s medications. They may also send a nurse to your home to help with injections or to provide more training. They will ship medication to your house if you prefer! They will email and call to check in on you and your child to make sure that there isn’t anything related to your child’s medication that you need. If you go on holiday and don’t have medication, they will ship it there, too.
  • Your hospital has patient resources that you can use. If you think you or your child could benefit from them, don’t hesitate to ask your doctor to connect you! Programs like:
    • Child Life,
    • Physiotherapy,
    • Occupational Therapy,
    • Social Work, and
    • Art & Music Therapy

You have support. You just need to know where to turn.

It’s daunting, all these things that you may need. But your priority is your child—you know what your child’s needs are better than anyone. If you need time to process everything, that’s ok. If you need support and need to ask questions now, that’s ok.

You’re going to be ok.

Sincerely,

Chris,
Mom & 6 yr patient advocate for a child with a rare autoinflammatory disease.

If you are on a specialty medication for an autoinflammatory condition like Anakinra, Ilaris, or Actemra – do not hesitate to contact your medical team if you have any questions or concerns regarding your child’s medication.

Keep going, warrior. You got this.

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