Having our daughter diagnosed with cancer was one of the most frightening things I’ve ever experienced. The first month was inundated with a haze of doctor’s appointments, friend’s reactions and an overwhelming amount of information. Its difficult to reconcile my journal and my memories with what I know today. Even though the social worker told us that receiving this diagnosis was a “Traumatic Event”, we didn’t really understand what that meant. Trauma affects each person differently. While Alex was the primary recipient, we were all thrown. Today, I’ll share the things I wish I had known and even more importantly… the things I wish I had done differently.
What I Remember
Alex’s diagnosis was during the last week of the 2015-2016 school year. Alex had been feeling run down and having the occasional low-grade fever. I was working 3rd shift as a pastry chef for a local farm to table restaurant. When my husband called me at 7am, Alex had a fever of 103.5. This was extremely high for Alex, but I knew better than to freak out over a fever, so we gave her some Tylenol. An hour later it was still 102.7.
The best and fastest place to take Alex, for reasons not relevant here, was the emergency room. We were in and out by 9:45am. They did a throat swab, diagnosed her with strep and sent us home with amoxicillin. Alex didn’t seem to have any symptoms of strep, but the test came back positive. Within 30 minutes of her first dose of amoxicillin, she was violently ill. She actually looked gray. I’d never seen anyone look gray before. We went back to the emergency room. This time, the wait was forever.
Wishing for Strep Throat
Around 8PM we were taken back to an room where they did a nasal swab and diagnosed her with multiple strains of the flu. Yes, they were telling me that she had both strains of flu and strep, even though she didn’t have any corresponding symptoms. Through all of this, Alex was extremely lethargic and the fever was constant. We couldn’t get it below 103, even with Tylenol. I not so politely suggested that there may be a problem with the swab system and that they should be looking elsewhere.
After looking “elsewhere”, the doctors came in and told us that the blood results were unusual and they weren’t capable of making a diagnosis. When pressed for details, we were told that her White Blood Cell count was 0.5. Thanks to the internet, we knew that there are only a few reasons for a count that low. We were taken to the children’s hospital by ambulance, because Alex wasn’t stable enough for regular transportation.
The next 12 hours was more blood work, multiple physical exams and a bone marrow biopsy. It was a waiting game. One thing that I still struggle with is how detached I became through this process. I knew whatever reactions I had would play across my face and affect how my daughter would feel. I told everyone, “There is no crying in this room, unless its Alex.” On one side, I think being surrounded by strength helped Alex, but on the other I don’t remember having any feelings myself. I completely shut down that part of my brain. I still remember the face of the young resident that told me about the need for the biopsy. She was crying while she told me. My only reaction was to think how hard it must be for her to share this kind of news. Alex’s final diagnosis was Very High Risk Acute B-Cell Lymphoblastic Leukemia. Of all the types to get, it was the one with the best prognosis.
Trauma 101: In the Beginning
Receiving a cancer diagnosis is a traumatic event. Understanding that, is vital for anyone starting down this journey. If you acknowledge it, then you can put some safety nets in place. We were all experiencing symptoms of trauma exposure, such as:
- Hypervigilance
- Mistrust
- Flashbacks
- Nightmares
- Anger
- Irritability
- Exaggerated emotional & startle response
- Abrupt mood swings
- Shame & lack of self worth
- Reduced ability to deal with stress
- Poor focus
- Difficulty sleeping
- Anxiety & panic attacks
The worst for me, at the time, was the inability to focus. One of the many things I wish I understood sooner is exactly how much trauma affects your ability to process and remember information. That first month, you are given an avalanche of information. You will be handed the entire treatment protocol (treatment dates, medications, dosages, side effects, study data, etc), emotional and financial resources, team information and… depending on your group, much, much more.
Consider that the memory of a normal, healthy person retains:
- 10% of what they see
- 30 to 40% of what they hear
- 90% of what they see, hear and do
- after just 20 minutes there is a 42% reduction in retention
- after 31 days there is a 79% reduction in retention
And to make things more difficult, you’ll be expected to learn all of this at a time when you can’t remember if you ate lunch or put on underwear. It feels like you are drowning in paper. Our first year was one crisis after another, with lots more paperwork. My inability to process in that first month, made it that much harder.
If you are facing a long medical journey, ask that OCD friend of yours to help you get organized. It doesn’t matter if you channel Dolores Landingham (1st West Wing reference of the blog…there will be many more to follow), you will need help. You will need the ability to find any and all pieces of paper at a moments notice, at any given time. Set up a filing system just for the illness and for the patient. We are 2 1/2 years in and we have three full file boxes of paper. It took me almost one full year to fix the problem, because I didn’t prepare ahead of time.
Trauma 101: Featured Podcast
As I mentioned in my last post, Confessions of a Podcast Addict, I’m a huge podcast nut. Which is probably why I struggled with choosing a Featured Podcast for this post. There were so many to choose from. Here is my playlist from June 2016.
Now for the ROBCAST with Leith Mchugh. To be honest, I couldn’t even listen to this one all the way through the first time. It showed up in my feed the first day we were discharged from the hospital. The Mchugh families’ journey blows the bell curve out of the water, when it comes to traumatic experiences, but sometimes I need to see an actual golden calf for me to realize it is a golden calf. In other words, without this podcast, I wouldn’t have recognized the seriousness of the trauma we were about to experience. Even though, prior to Alex’s diagnosis, I was already reevaluating how to manage my professional life, I wouldn’t have thought to look past the cancer to where our lives could go. And I wouldn’t have been planning support for each family member and watching for them to go under. This podcast prepared us for our journey in ways that aren’t just lucky, they are miraculous.
The ROBCAST with Leith Mchugh is an amazing telling of a story. The Mchugh family went through their medical journey for 12 years. After 4 1/2 years, they were just starting to feel somewhat restored. I may not have been able to listen all the way through the first time, but I can’t count the number of times that I’ve listened to it now. There is an emotional moment describing the death of a child, that could be a trigger for some. It is a beautiful story, even in the darkest moments.
Resources
THE ROB CAST
Favorite Quote
Trauma 101: Trust
That first week, we turned inward as a family. All I wanted to do was take care of my daughter. She became my only priority. I focused on her emotional and physical wellbeing. I didn’t leave her side. Eventually, that was to our detriment. We turned inward too much, for too long.
By isolating us, I created an environment that made Alex think that I was indispensable. I would tell anyone else starting down this road to welcome Child Life. The Child Life Services department is there to help you and your child adjust to this moment in your life. They provide emotional and age appropriate distractions to ensure that you receive the services you need.
In the beginning, we didn’t even let them in the room. Not because they were horrible people, just because we were hyper focused on the current moment. Now, most of the time, Alex wanted to do her own thing, but I could have invited them in to our world. Our Child Life team is wonderful, and Alex didn’t develop a relationship with them until the second year of treatment. That is my fault and there were times, that they could have been a huge help.
Trauma 101: You Say Denial. I Say Distraction
Family was everywhere, but thank God for Youtube. I could find kittens, puppies… just everything… But this was our favorite. Our family knows what its like to have a distinctive laugh. Thanks Mom!
Prior to diagnosis, Alex and I had been watching Gilmore Girls. The show created opportunities to discuss everything from coffee to sex. We watched the last episode the week of her diagnosis. We identified with the characters, the town and the family bond.
Our family excels at distraction. Some may call it procrastination or denial…but we are happy with what works. We all used social media to reach out to friends. Most of my posts were just updates…However, Alex’s first post was awesome.
I know. Right? and I only posted looking for help to move a pool table…
Trauma 101: Lessons Learned
Each post will include lessons learned during our journey. It is my hope that this blog will help others in some way.
- A diagnosis like this is a traumatic event. You will be in shock. Once you accept that, you will be able to plan for it.
- Get help in the beginning. There is too much important information coming at you. Have someone help you organize it.
- Build relationships for your child. Child Life can be a huge asset if you let them.
What's Next?
I’ll be sharing other Podcasts and Lessons Learned over the next few weeks, months and years (now, that’s positive thinking). If you would like to be on our mailing list, just enter your email address below.
Chris your words are divinely anointed and are appointed from a deep sense within your heart of knowing pain and suffering, especially for your child. There is no greater pain than to hold your child in pain and feel helpless to comfort them. This blog is an act of courage and strength that comes from a place in your heart to serve others walking a similiar path. You will bless many people with your testimony of strength and faith in the midst of adversity. May you and your family be blessed and prayers for total healing for Alex and your family.
Thank you so much. This is definitely difficult for me and the positive feedback really helps.