Enchanted

Several weeks ago, on the way to Trebor’s end of school picnic, I received a phone call from an angel. His name is Dub Sabrsula, and he was calling to let us know that our good friend, Kathy Ricke, had contacted him on behalf of our family. Dub works for the Enchanted Nurseries family, and is a landscaper. Kathy wanted to know if he could give Kaylee the backyard of her dreams, and Dub was excited to help.

You see, Kaylee has always loved flowers, bugs, and the great outdoors but our backyard was sadly lacking. We’ve lived in our house for a year, but never really put any effort into the yard. We’re a  military family, so we expect to move every year, and knowing that puts a damper on remodeling. However, when Kaylee was diagnosed with leukemia, we knew that we wouldn’t be moving for awhile, and that she deserved an awesome place to play and recuperate. We began by having a garage sale and using the money earned to buy her play equipment and a few flowers and a large herb garden (she loves basil and eats it like candy). That’s about where the money ran out, though, and so that’s where we stopped. It was fine, that way, but FAR from beautiful. Then Dub and Enchanted Forest and it’s sister nursery Enchanted Gardens came into our lives. 

A view of our sad back yard... after the toys, but before the makeover

We’ve shopped at Enchanted for years as they’re local and family owned and operated (important qualities for me, a mom who (up until recently) ran a small business) and have the very best quality plants in an absolutely gorgeous atmosphere. We will never ever buy from anyone else ever again. EVER. AGAIN.

This will be the fairy garden!

Dub and Amy, another Enchanted employee, came up with a plan to make our yard perfect Kaylee. They would include a butterfly garden and a fairy garden and include tons of pink and purple (Kaylee’s favorite colors) and all the plants would be designed to attract butterflies (which she adores). 

The plants are designed to attract butterflies.

A couple weeks later, on a Monday, a team of landscapers showed up at our house and for 3 days straight worked miracles. They put in a patio that we desperately needed, a sprinkler system, which is the coolest thing ever, restructured our play area, and added flower beds along with the most gorgeous plants you’ve ever seen. We also got a cherry tree, which has already produced cherries! A kumquat tree with fruit already on it, and a meyer lemon tree with, you guessed it, lemons already growing. 

Our old herb garden with the Kumquat tree on the left and the new Meyer lemon tree in the back right

A mostly mature yard in 3 days. And do you know what this makeover cost us? Nothing. Not. One. Penny. The Enchanted family and it’s suppliers provided EVERYTHING out of kindness and a love for my girl. We could never thank them enough, because the backyard is now Kaylee’s favorite place to be. Not just Kaylee’s favorite place, in fact, but the whole family’s. We spend hours out there every night just relaxing.

Our new back yard. Heaven.

A few days ago, the kids were at my parents house so Robert and I could get the house ready for Trebor’s birthday party, and we were walking around the beds. We noticed that the milkweed the landscapers planted was COVERED in caterpillars who were working on stripping it bare. EXACTLY what we were so looking forward to... except the kids weren’t there to see it. 

They love the plants and being able to observe the bugs

Today, the kids and I went back to Enchanted Garden to buy more milkweed so they could see the process. While we were there, we found a bag of 2000 ladybugs. Kaylee was THRILLED! Of course, we bought it :) Our yard is now a lady bug/ butterfly kingdom, and our girl is enchanted. 

And, just to make you smile... Our two year old, Declan, who thought his ladybug friend might taste good... He promptly spit it out, and the ladybug flew off, safe and sound ;)

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%)

The Nightmare Continues

Kaylee in the hospital the day after diagnosis... Still dancing

Robert (my husband) finally called me as we were driving to pick Trebor up from school. I had already panicked on the way to pick Kaylee up, and was doing my best to not break down again while she was in the car with me. I, very calmly (probably eerily so, since I was having to force myself to not fall apart) informed him that all of Kaylee’s labs were too low and we were heading to Texas Children’s to have more tests run. Before I could finish explaining it all, he, not so calmly, asked me “Do they think she has leukemia?” That’s when I started to fall apart again. I said “Well that’s something we’re looking at...” and he hung up. I can sort of laugh at it now, but at the time.... He called back just a minute or so later, still not quite composed, but just as scared as I. 

By the time we finally made it downtown, my mom was there to meet us at the ER. We went in, filled out a little bit of paperwork and were called back pretty quickly. They asked all the same questions as her pediatrician, and it seemed that they, too, weren’t convinced there could really be something so wrong with so few symptoms. They repeated the blood work (This time, she had to have an IV placed, and that was traumatic). Hours and hours, we waited. First they came back and confirmed that the counts were, indeed, too low so they would send her bloodwork to a hematologist who would look at them under slides. We got there at noon, at 5:00, my mom left to get the boys from daycare. Right about then, they came and drew more blood. I was talking to Robert online all through this (he was 9 hours ahead of me, and it was WAY past his bedtime, since he has to wake up super early for PT in the mornings). After that last blood draw, I remember telling him “This isn’t good. There’s something really wrong”.  Robert was exhausted and told me he was falling asleep, but would keep his internet up so he could hear the messenger beep if I sent him a message. 

At around 6:30, the two lead hematologists (who I hadn’t met yet) came into our room with our nurse. As soon as they introduced themselves, I could feel my heart drop, and I was trying so hard not to just start bawling with Kaylee still in the room. The nurse took Kaylee to get a special treat from the treasure box and, while I can’t remember the exact words of the Dr, the ones I do remember are “We’ve tested her blood, and we’ve found that she does have leukemia”. They stayed and explained that we’d be admitted immediately, and that she would have a bone marrow biopsy the following day to determine what type of leukemia it was. As soon as he told me it was leukemia I (very rudely, I’m sure)  began trying to message Robert. He didn’t respond.

After the doctors left, I took Kaylee to McDonalds and let her order everything she wanted. I’ve never bought my kids soda and try to limit their “crap” intake, but that night she got chicken fingers, sprite, and a milkshake. I told her “all rules are off tonight, Kake... you can have whatever you want”. After the hell she’d been through (blood draws were new to her, and she cried and cried and cried every time someone came in to mess with her IV), she deserved Disney World, the least I could do is give her something fun to eat. During the trip to McDonalds (in the next building) and all the way back, I was still frantically messaging Robert with no message back.

After more than 30 minutes, he finally messaged back, and I explained what was going on. I honestly cannot remember anything about our conversation. Really, all I remember about the rest of that night is comforting Kaylee and crying and crying and crying after she went to sleep. The nurses were SO kind, and the doctor who had to come in and read 103398609804589 pages of paperwork regarding the procedures she’d have done the next day was as comforting as he possibly could be. Every time I’d look at my girl, though, I’d break down. She was having nightmares in her sleep (a first) from all the trauma of the day. 

I didn’t sleep more than 10 minutes that night, and Kaylee’s sleep was broken as well. I remember just laying in bed with her (since she couldn’t sleep without waking up terrified without me holding her in her sleep) wondering how something like this could have happened to the SWEETEST child in the world. Kaylee’s the kid who will go play with the kid who’s being left, the kid who ADORES her brothers and well... pretty much everyone. Why her? 

While I knew about leukemia, and had even fundraised for a sweet little boy WITH leukemia, I can honestly say I never really thought “it could my kid”. I’d never met a “cancer kid” BEFORE they were diagnosed, so I guess it always seemed like something that happened to “other” people. I KNEW it would be my worst nightmare, my imagination could never imagined just how AWFUL the reality was. Looking back, months later, I wish I’d been more informed. I was alone, and all I knew was “leukemia is fatal”. I can say, without a doubt, that was the very worst day of my life. From completely normal to SHATTERED in less than 12 hours. From NO symptoms to deathly ill in 48 hours. 

Our lives changed forever on that Wednesday night. Fortunately, looking back, it’s not as bad as I feared. I remember, when we left the hospital on Valentine’s Day, our social worker told us “You will become experts at finding the silver lining” and it’s so true. I see more good in strangers than I ever have. While there have been a few let-downs, there has been SO much joy, love, and support offered up to us from most of our family and the community. We’ve been wrapped up in love since the moment I announced (facebook is a beautiful thing)  her leukemia. Within hours, one friend had organized a gift card drive. By the time we left the hospital, Kaylee’s room looked like a gift shop. She had more crafts than she could possibly complete, and movies to watch day and night. She was happy. When it comes down to it, at the end of the day, that’s what matters. My focus has changed entirely. Things that were secondary are so much more important and things that mattered SO much are just distant memories. Cancer sucks, there’s nothing that will change that, but my reality does not.

Looking Back

Kaylee has always been a happy, healthy, NORMAL child. I can count on one hand the number of times she's been to the doctor due to illness. She's had one mild ear infection, one virus, and a bad cough in a little over 6 years. 

The most common question I get from new friends is "How did you know something was wrong before diagnosis?" The short answer is "We didn't. We had no idea" And it's true. We really had no clue that there was something "really" wrong with Kake when her first symptoms presented. Here's the long version:On Feb. 7, 2012. I went to pick Kaylee up from school, like always, and she tripped and started crying uncontrollably. She'd been acting over dramatic (or so I thought) a lot the past week, and I was frustrated. Her teacher assured me she never acted like that at school, in fact, she'd never even seen her cry! We went to the store after school, and she sat in the cart the whole time, tired and weepy. It was the night after the super bowl, and she'd stayed up later than normal, so I thought maybe she was just exhausted and hungry (She didn't like the lunch I sent her that day, so she refused to eat it). For the rest of the evening, she didn't walk, and fell asleep early (after eating a BIG supper). I decided it was a virus (fifth's disease was going around) and thought I'd keep her home the next day. Later that same evening she tried to get up to use the bathroom and still couldn't walk. At that time, I thought she couldn't be "faking it" and brought her back to bed with me and decided to take her to the pediatrician the next morning. 

Still thinking it was a virus, I kept her brother (age 4) home from preschool the next morning (because I didn't want to send him if they had something contagious) and we all headed to the pediatrician's office. After waiting for an hour and a half with a VERY cranky (almost) 2 year old, I was livid and at the end of my patience. Kaylee was walking, and I was back to thinking she was being over dramatic. The pediatrician looked her up and down and told me she was certain Kaylee's symptoms were all in her head, as well. She listed all the symptoms she SHOULD have if it were any number of diseases, and she had none. No bruising, no redness, no swelling, and no fever. However, she suggested that we could have some blood work done just to be certain. I was just ready to be DONE at that point, and started to refuse. Then, I thought, "well if she thinks she can fake being sick, and keep me from working, she's going to learn that there are repercussions", so off to get blood drawn, we went. The rest of the day, she behaved normally. She was still walking a little slow, but went to ballet and made it up and down the stairs several times.

The next day (Wednesday- 2 days after she first fell down), she went to school like normal, and I went off to run my errands. (A week before Valentines' Day, so I had TONS of work to get done). I was checking out at Whole Foods when I noticed I missed a call from the pediatrician's office. I checked the message real quick, and started to worry. Her doctor just said that they'd gotten Kaylee's blood work back, and we needed to talk. Call her at the office. I could tell something wasn't right, so I headed to the car, loaded the groceries and the baby up, started the car and made the call. I KNEW something was REALLY wrong when they pulled the pediatrician out of a room to talk. She said Kaylee's levels were all too low- Her red blood cells, her white blood cells, and her platelets. This was indicative of a bone marrow problem- it could mean she had a virus that caused her bone marrow to stop working, temporarily, or it could be leukemia. Her levels were so low, though, that she didn't want to run more tests. She had already talked to the staff at Texas Children's and they agreed that I should take her downtown to the TCH ER immediately. There are SEVERAL hospitals closer to me, so I didn't know (then) why it was so important for me to take her to TCH (close to an hour away). I facebook messaged my husband right away, telling him to call me (I can't call him in Germany), and called my mom to see if she could take the boys. We were all in a panic. I called the school and asked them to have Kaylee waiting for me at the front, called one of my oldest/best friends (who owns a daycare) and asked her if she could watch the boys (my mom was downtown too, and couldn't make it back in time), ran home and grabbed some stuff and headed downtown.