My Son’s Experience with an Aneurysmal Bone Cyst

Back in September 2019, my family started a journey with a medical condition we had no idea even existed – the Aneurysmal Bone Cyst, or ABC for short. With my son’s consent, I wanted to share his experience with the hope that it would bring increased awareness of this rare tumour and offer some comfort to other families and individuals with ABCs. Yes, this is a departure from the happy-go-lucky thrifting posts that normally occupy this space but it is an important topic that has commanded my attention for months. Anyway, I haven’t been thrifting since the pandemic started – I’ve barely worn anything but shorts and a t-shirt since March! Just as with my bunion surgery and my own cancer scare, I am interested in authentic connection over what happens in our real unedited lives.

What the heck is an Aneurysmal Bone Cyst anyway?

An aneurysmal bone cyst (which is often abbreviated ABC) is a “blood-filled, fibrous cyst that expands the bone and can cause pain, swelling, and fractures. They are benign cysts (non-cancerous) that don’t spread.” Sounds rather medical-y, right? Let me break it down, in reverse order.

C is for Cyst, or is it?

‘Cyst’ is a bit of a misnomer. An ABC is actually “a true benign bone tumor surrounded by a thin wall of bone.” We were shown images of the cyst and while I nodded knowingly, I had no real idea what I was looking at.

B is for Bone and Benign

ABCs are most commonly found in the knee, pelvis, or spine. That being said, I joined a Facebook Group for ABCs and people are experiencing ABCs in a whole lotta bones – fibula, clavicle, femur, foot bones, occipital bone. Any bone is fair game for this abnormal growth.

We’ll get to this later, but many parents are relieved to hear this is a BENIGN tumour. It’s important to understand that, though it is benign, the ABC destroys bones, and, though it doesn’t spread like cancer, it often recurs.

A is for Aneurysmal

Aneurysm is a scary word all by itself. It brings to mind, brain aneurysm, and then mind takes you down a rabbit hole of terrifying possibilities. In fact, “aneurysmal refers to the explosive, expansile nature of the bone containing the aneurysmal bone cyst, similar to the enlargement seen with blood vessel or heart aneurysms.”  The best description I could wrap my head around is that the ABC grows in the bone and makes the bone like an eggshell, highly susceptible to breaking. (That is a good description that brought me ZERO comfort.)

Early signs of the Aneurysmal Bone Cyst

My son’s first symptom was unexplained back pain. The first (incompetent) health care professional to see him diagnosed a subluxated rib – say what???? – and prescribed some steroids and pain killers. His pain continued. Next stop, the pediatrician who ordered an x-ray, and then the journey began. We learned that there was already an old fracture in his vertebra that had been asymptomatic. What does that mean? Often there are no early signs of an ABC. Often, they are found by accident when an x-ray or scan is ordered after a fall or other incident.

Should we go around x-raying our children routinely, just in case? Of course not. BUT, if your child has unexplained pain or swelling, DO request an x-ray. DO NOT let anyone adjust or treat your child without an x-ray. Remember, we are talking about a fragile eggshell bone here.

Steady yourself because after reviewing the x-ray, the first possible diagnosis the doctor will discuss is cancer. I will never forget the kind old pediatrician telling me as gently as possible that my son’s x-ray showed a difference that could be a fracture or could be a malignancy.

Time stopped.

I couldn’t breathe. I couldn’t think. Then I couldn’t stop crying. I called my husband crying. I cried to and from work. I cried myself to sleep at night. I did not cry in front of my son who maturely and reasonably said, let’s not freak out till we know what it is. (Say what??? Are you sure you’re just 14 years old??) My son had that first x-ray on October 8th, got the worrisome news on October 9th, had an MRI on October 27th, and his first appointment with the orthopedic oncologist on November 1st.

He had a biopsy on November 25th to determine whether it was an ABC as suspected or the differential diagnosis of cancer.

And on December 3rd, I received the phone call confirming that it wasn’t cancer just as I was delivering my parents-in-law to the Houston airport.

“She descended into tears of relief.” Descending into tears is what relief felt like, washed away in a river of relief.

Treatment for ABCs

ABCs are relatively rare, found in less than 1 in 100 000 people, and are usually but not always found in children. There is no known cause. My understanding* is that there are generally two courses of treatment. The first and less invasive treatment is sclerotherapy. An interventional radiologist injects the cyst with skele-gro (okay, it’s not Harry Potter magic potion but it might as well be). This is done every 8 weeks-ish depending on the recommendations from the medical team. It is usually done under general anesthesia and it causes minimal pain and requires minimal recovery time. My son had his first scelotherapy treatment in December 2019.

His second sclerotherapy session was delayed due to Covid which led to…

The second and more invasive treatment is surgery. Basically, a wizard (okay, it’s not a Harry Potter magician but it might as well be) cuts out the tumour and in some cases, does a bone graft or other adjunctive procedures. My son’s ABC is in his T5 vertebra and during the Covid delay, it grew to significantly compress his spinal cord. He started having tingling and numbness in his legs and was losing his ability to balance, stand, and walk. We rushed him to the ER at the hospital where he was receiving treatment and he was in surgery within hours. Those two sentences hardly capture the scariest time of our lives. I feel sick just writing it and thinking back on it. My heart my heart.

Recovery from surgery for ABCs varies. My son’s particular surgery was significant. He spent eight days in the hospital. Gradually he was able to move in bed, sit up, stand, walk, have a shower. His pain was under control and he made gains every day. I knew he was nearly ready for discharge when he started charming the nurses with his great sense of humour.

So, my advice now to parents new to the ABC journey is: don’t delay your sclerotherapy treatments or scans. If your child shows any change in symptoms, seek medical help right away. You will never regret taking action.

Many times, sclerotherapy is effective in treating ABCs. Many times, both sclerotherapy and surgery are necessary, as was the case for my son. Sometimes, ABCs are inoperable and sclerotherapy does the trick. The bottom line is that no matter where the ABC is, there is good reason to hope for successful treatment.  

*All of what I just wrote is highly dependent on the specific bone and circumstances of the specific individual. Do not take it as medical advice because I am no doctor. I am merely trying to explain my understanding.

After Aneurysmal Bone Cyst surgery

I happen to be a former occupational therapist so I had a pretty good idea what my son would need after discharge from the hospital. We made arrangements for equipment such as a bath chair, walker, wheelchair, and reacher. What you need will depend on the location of the ABC and the surgery.

My son experienced minimal pain, thank God. He had rods and screws placed in his spine to stabilize the area.

Though he showed neurological signs for only a few days, it will take a long time to fully recover from the spinal cord compression. He goes to outpatient physiotherapy three times a week and has his “OT Mom” to contend with on the off days! My best advice is to find good therapists and do what they say for as long as they say.

Kids are so resilient. They will heal faster than you think. They will have a better outlook than their parents! I have been intentional in asking my son what HE is thinking and feeling and separating my experience from his. I do not want to project my ‘limitations’ onto him. I have encouraged him to talk about this whole ABC journey and we are ready and willing to take him to a therapist to help him cope. I haven’t gone yet but parents should also consider seeing a therapist or counselor. The stress and emotion of seeing your child endure an ABC is formidable.

Can Aneurysmal Bone Cysts regrow?

Unfortunately, ABCs can regrow even after sclerotherapy and surgery. Usually, they recur in the same area. That means that the ABC journey isn’t a sprint; it’s a marathon lived in two to three-month chunks of emotional and medical turmoil. What’s a mother to do? What we always do: carry on and do our best. Every few months, my son will have x-rays and an MRI and doctor’s appointments to monitor for any potential regrowth.

Every few months, I’ll hold my worry deep in my heart and be strong and positive for my son. I’ll shamelessly ask for prayers for him. I’ll fight with the school about his absences and the time he needs to recover; after all, the journey is an emotional and physical rollercoaster for him too.

Can we ever stop monitoring for regrowth? Well, there is no straight answer. I have heard that after a couple of years of clean scans, the frequency of monitoring can be reduced. Our doctor said that after a while, the disease process tends to die out. Some say that once the bones are done growing, we can relax, but others find their first ABC well into adulthood. There isn’t enough solid information that can be generalized to the diagnosis of aneurysmal bone cyst. The best thing is to find a good doctor and then follow their recommendations. But we all know, as mothers and parents, we will never stop worrying about the recurrence of ABCs in our babies.

What kind of doctor do you need for an ABC?

This question has been on my mind as my family faces a potential move (we await word on whether our US visas will be renewed). My son’s primary doctor is an orthopedic oncologist who also specializes in spine surgery. Usually, aneurysmal bone cysts are best treated in a cancer facility because of the nature of the tumour. Depending on the location of the ABC, an orthopedic surgeon may be the best option. You can also expect to have an interventional radiologist on the team and too many interns and fellows and residents to count. Don’t be afraid to ask for a second opinion and trust your mother’s intuition. No matter how skilled and specialized the doctor, we parents are EQUAL members of our child’s medical team.

Dealing with healthcare in the middle of a pandemic

When we first became aware of Covid and when the shut-downs started, I was scared to go anywhere near a hospital or clinic and that, unfortunately, influenced our decision to delay my son’s treatments. In reality, the hospital where he is treated, MD Anderson Children’s Cancer Hospital, has excellent precautions in place. The risk of Covid was nil. However, healthcare in the middle of the pandemic means that only one parent can accompany a pediatric patient to any appointments, and adults are on their own. My husband was the one who took my son to the ER and then waited while he was in the OR for 11 1/2 hours. I was a wreck waiting at home. We traded off once my son was out of post-op recovery and then I stayed with my son for the 8 days he was in hospital.

My husband was able to visit a couple of times; I would sign out of the hospital and he would sign in and bring the nurses cookies as a gratitude offering. Every person who entered the room wore a mask and both my son and I were monitored daily for signs of Covid. Whenever we stepped foot out of the room, we donned a mask. We follow the same precautions when going for scans and have been able to have virtual follow-up appointments.

My son’s aneurysmal bone cyst has been a determining factor in our response to Covid. After he returned from the hospital, we went back to full shelter-in-place, leaving the house only for appointments and groceries. Only within the past week have I started to venture out, slowly and carefully. We opted for virtual schooling for at least the first grading period. I simply cannot fathom him having to battle Covid after everything else he has been through and I cannot risk his access to therapy and scans with a mandatory quarantine should anyone in my household be exposed. Not to mention, if anyone in our household became seriously ill with Covid, everything will get exponentially harder to deal with. In short, I am taking Covid very seriously and shaking my head in despair at those who brush it off and carry on as normal. I implore everyone to wear masks and do at least the bare minimum to control the spread. Do it for me and my son.

Living with an Aneurysmal Bone Cyst

Fortunately, my family is currently in a reprieve from dealing with the ABC. My son had his first follow-up scans and appointments in August and, praise God, there is no sign of recurrence so far. He is getting stronger every day and has a great attitude. He started virtual school and cooks delicious meals for us and is a loving big brother to his siblings. He has become cautious – more than any 14-year-old ought to be. He regularly reminds us all to be safe in whatever we do. He does not want anyone to have to go through what he has gone through.  My heart my heart.

My cup runs over

My heroes wear masks. Dr. Justin Bird is the kindest, smartest, most skilled, absolutely amazing doctor. We believe we moved to Houston back in 2017 so that our son could eventually be treated by Dr. Bird. Everything else has just been a bonus.

In addition to Dr. Bird, we are infinitely grateful to his PAs Krystal and Mark; Dr. Tam the interventional radiologist from Canada holla; Dr. Hirase, Dr. Harvey, Dr. Hernandez, and the inpatient team; nurses Nimmi, Hope, Kelly, Ryan, and more; the inpatient OTs and PTs; Julia our Cigna RN case manager; PT Dawn and PTA David; and every person who had a role in my son’s hospital stay and health care experience, from nursing assistants to meal service to housekeeping.

Know that I thank God for you all every day and pray you are blessed beyond measure.

xoxo Nicole