Seizures

My kid loves to swim. She LOVES it. We joined our community country club this summer just so she can swim as much as she wants. When you're a cancer kid, it seems like you're limited on so much. Except swimming. This girl can swim for hours and never get bored or tired.

Kaylee jumping off the diving board yesterday afternoon

This morning, we went to the country club as usual. It was a beautiful day, and the kids were going stir crazy at home, so we were all looking forward to burning the excess energy off in the water. The boys wanted to go to the "baby" pool, and Kaylee wanted to go to the big pool. This is where everything started to go wrong...

I was sitting on the side of the baby pool watching the boys run around, and Kaylee came over to ask if she could jump off the diving board. Only, she couldn't ask the question. She kept starting to phrase the question- "Mama, can I...." and then she'd trail off. Now, this isn't at all uncommon in my house- so I stopped her with my completely normal "Kaylee- stop. think about what you're going to say, and then say it." Finally, I just told her to "go", and off she went.

She ran over and jumped off the diving board once, and swam over to the edge and climbed up the steps, like normal. Then, she went to do it again. She jumped again, and I watched and watched for her to come to the steps, and finally saw her swimming towards the diving board. It looked like she was swimming in circles, and there was a little boy trying to gesture her to the edge to help pull her out. I ran over, because she was obviously having problems and pulled her out. She seemed disoriented, so I told her we'd just stick around the baby pool today. I was talking to her, and she was not really responding. She seemed drunk, really- She was making noises, but not making sense. She tripped and ran into the pool bar. I picked her up, and noticed that she was limp. Within seconds, she began shaking violently. I yelled out for someone to call 911, that she had leukemia and was having a seizure.

Immediately, several people came running over, and the lifeguards cleared the pool. There were a few people dialing 911, and the lifeguards were assessing her within seconds. I still don't know how it happened so quickly, but almost immediately, an anesthesiologist who was at the club, and a cardiac nurse, who was also there, ran out and were helping as well.  Kaylee wasn't at all responsive at this point. She was awake, but could form no words and wasn't responding to simple commands.  By the time the ambulance showed up, my mom was already there (I'd called her to grab the boys), and while Kaylee recognized her, she couldn't really speak to her either.

We hopped on the ambulance, and off to TCH we went. During the whole ride, she didn't speak at all. She would look up, when I would say her name, and she was smiling the whole time. After getting to the hospital, she began seizing again. She was given atavan to stop the seizures, and a barrage of tests to determine the cause of the seizures. The CT scans showed no bleeding, the chest xrays were clear, but the MRI wasn't so kind.

Kaylee had toxicity around her brain. The chemo that's saving her life is also hurting her brain. It's uncommon, but not unheard of it. We're still unclear on what her protocol will be from now on, but she won't be receiving any more chemo in her spine until an MRI shows that the toxicity has dissipated.

She's been unreasonable, emotional, and completely and totally disoriented and delusional during the times she's been awake. Every time she wakes up after a nap, she can't remember anything that happened before she had her first  seizure. For hours, she wasn't awake at all. She went through hours of tests and scans with no signs of "life". It was terrifying. It may happen again and again, or it may never happen again. We don't know.

A PSA from a tired, frustrated cancer mom

What more can we do to keep her separate? 

See that wagon? We have it for a reason. 

My kid has leukemia. She has a HIGHLY compromised immune system, which means she gets sick very easily. VERY. EASILY. 

You see that room in the picture? It’s the PACU. It’s the waiting room for day surgeries at the Texas Children’s Clinical Care Center. Whenever Kaylee has to have a a spinal tap to inject chemo into her spine, this is where we go. It’s also where all the kids go who need tubes, adenoid removal, and other minor surgeries. 

In this room, there are signs (several of them) asking parents to PLEASE not bring sick kids into the PACU. Those signs are also there for a reason. I realize it’s not alway convenient to not bring siblings when you have an appointment, but I BEG YOU, if they are sick, PLEASE do not bring them to PACU (or anywhere else in the hospital, unless they ARE the patient). 

The reason I’m writing all of this- My kid has been HOSPITALIZED three times because she’s gotten sick from kids in the PACU. When my kid runs a fever, it’s life threatening. What would be a minor cold for most kids can put her in the ICU. For some reason, her body doesn’t just run fevers.... when she runs fevers, her heart rate also spikes dangerously high and stays that way for hours and hours (last time it took 24 hours in the ER, several IV boluses, and a transfusion to bring it back down to a safe range). It’s scary. It’s more than scary- It’s absolutely terrifying. And it’s happened 3 times in 3 months. 

You see how swollen she is? That's because they had to fill her with GALLONS of IV fluid
in an attempt to lower her heart rate

We bought the wagon to keep her from having to touch anything other germy kids have touched, and STILL there were kids with snot (literally) running down their faces slamming their cozy coupes into her IV pole (also, not a fun toy) and into her wagon. There were kids breathing on her and looking over her shoulder. And there parents who did NOTHING. NOTHING. 

Part of the blame is on the PACU staff, because in ALL of our visits, we’ve never seen them sanitizing the toys they provide. However, the REAL blame is on the parents who see the signs and ignore them because it’s just not convenient for them. I get it, I really do, but that kid in the picture? She means more to me than your convenience. You are risking her LIFE. 

PLEASE PLEASE PLEASE, if you absolutely insist on ignoring the rules, DO NOT allow your sick kid to touch, sneeze, cough on, snot on, breathe on etc, the toys that are there for the patients. Also, when you see a kid who is OBVIOUSLY not interacting with the toys or kids, STAY THE HE** AWAY.

Thank you. 

Why?

After she came home from the first hospital stay- in too much pain to smile :(

WHY???

That’s the second most common question I get from people. 

Why was she in so much pain that she couldn’t walk? Why did this happen to her? 

First let’s start off with WHAT? What type of leukemia does Kaylee have?

Kaylee has Standard Risk Pre B Cell Acute lymphoblastic leukemia (ALL). 

• Standard Risk- There are three levels of “risk” that doctors use to determine prognosis. When she had a bone marrow biopsy to determine what type of leukemia she has, the doctors also took a sample to look at the genetics of her leukemia (because everyone is different). She has high hyperdiploidy, which is associated with a low white cell count. Therefor, she has “unfavorable” genetics which increased her risk from “low” to “standard”. Fortunately, her prognosis is still VERY good. 

• Pre B Cell- (From Wikipedia)- A Pre-B cell is a precursor to the development of B cells. Certain leukemias/lymphomas are associated with immature B cells, and observing pre-B cell populations can be useful in the identification of these conditions.

• Acute Lymphoblastic Leukemia- (from Wikipedia) Acute lymphoblastic leukemia (ALL) is a form of leukemia, or cancer of the white blood cells characterized by excess lymphoblasts. Malignant, immature white blood cells continuously multiply and are overproduced in the bone marrow. ALL causes damage and death by crowding out normal cells in the bone marrow, and by spreading (infiltrating) to other organs. ALL is most common in childhood with a peak incidence at 2–5 years of age, and another peak in old age. The overall cure rate in children is about 80%, and about 45%-60% of adults have long-term disease-free survival.

• Acute refers to the relatively short time course of the disease (being fatal in as little as a few weeks if left untreated) to differentiate it from the very different disease of chronic lymphocytic leukemia, which has a potential time course of many years. It is interchangeably referred to as Lymphocytic or Lymphoblastic. This refers to the cells that are involved, which if they were normal would be referred to as lymphocytes but are seen in this disease in a relatively immature (also termed 'blast') state.

Now, for the WHY-

Why did she go from “normal” to so sick so quickly?

• That all has to do with the “Acute” nature of the disease. It’s quite common to be healthy one day and bed ridden the next. 

Why was she in so much pain?

• Leukemia is basically cancer of the bone marrow/blood. When the leukemia cells began dividing so quickly, they caused extreme pressure in her bones, which left her unable to walk.

Why Kaylee? (And this is the one that we asked ourselves over and over and over again)

• There is no good explanation, but (as we were told over and over and over again in the hospital) nothing we did, or didn’t do, caused her leukemia. Doctors have found that there is a genetic predisposition in certain kids for leukemia. They can examine 10000 babies when they’re born, and 100 might have the “trigger”. Of those 100, only one may actually go on and actually be diagnosed with it. Knowing that one of our children obviously had the predisposition, means that all three of our children have it, which gives them a very slightly increased chance of also having leukemia. (From 1% to 2%)