I’m not even really sure where to begin with this blog. I want to share our story, the start of our nightmare journey, but as I stare at the screen, how do I do that? It’s every parent’s worst nightmare to have to associate the word “cancer” with your child. How did we get here? Why Brynna? What happened? So many unknowns, so many questions we will never get an answer to. We have been rocked to the core, had our world turned upside down, yet God is still God. God is still good. That hasn’t changed, and we haven’t doubted that. In fact, I’ve felt God in a bigger way than I EVER have in my life, in just these past few days. It’s truly incredible.
The biggest questions I have gotten are, “How did you know?? What were her symptoms?”, so I thought I would write out her story, what led us to this point. This is as much for me as for anyone asking. I want to remember all the small, horrible details. I want to remember all the small victories. I want to remember all the huge victories. I want to be able to share the entire story with Brynna one day, so she can use this as part of her testimony, touching so many other lives. The thing with ALL (acute lymphoblastic leukemia) is that it happens FAST. It is sudden, it is ravaging, and it is awful. As parents, you blame yourself. How did I miss these signs? How did I let it get this far? But we were assured (by many people) that we didn’t miss it. It came on suddenly…at most a few weeks of symptoms, all of which were easily and totally explainable. All pictures in this post are from within the past 2-3 weeks…the decline happened SO FAST.
Brynna turned 2 on March 2nd. Around that time (maybe a couple of weeks prior at most), we noticed her getting a little crankier, a little needier, a little sleepier. Brynna has ALWAYS been a little needy and a never shied away from telling us how she really felt, so in all honesty, this wasn’t anything new. Add in the fact that we had a newborn, and it all made sense. Over the months of February and March, we were SO busy. We were out nearly every morning, and she took catnaps in the car, making her actual naptime pretty awful…easily explaining the tiredness and fatigue. We had also moved her into a big girl bed in the same room as Wyatt, so again, something that just seemed to explain the shift. By the time she had her 2 year old checkup on March 14th, she was very cranky and sometimes waking up during the night, needing one of us to snuggle with her. At this appointment, the doctor found an ear infection, and it all made sense! She had never been sick before (this was her first ear infection), so of course she was going to be cranky and not sleep well. She got started on antibiotics and we went from there. After that she had some good days and bad days…good moments and awful moments, but nothing alarming. She was also teething, getting those 2 year old molars in, and she has never been a good teether! It all added up perfectly.
And then 2 weeks ago. 2 weeks ago is when everything surfaced and progressed FAST. When I was getting her ready for bed on Monday I noticed a scratch up the side of her belly. It was just a red line and I figured I accidentally scratched her with my ring or something like that. She couldn’t fall asleep that night and only wanted to snuggle with Ben, so after I got Wyatt down and Cole down, I went to grab her from Ben (who was studying for a class). Her shirt was kind of pulled up and I noticed that the scratch had turned into all these purple dots, kind of like a long bruise. It looked like she had drawn a line with a marker on herself, and I even tried to rub it off before I realized what it was. I didn’t think too much of it at that point.
The next day, we met my SIL at the park to play. Brynna somehow tripped and fell on a slab of concrete that day. I had literally turned away for 10 seconds, and she fell, so I have no idea how she did it. She started crying and showed me her hands. She brushed it off, but wasn’t up for playing after that, so I just carried her around. A little while later, my SIL pointed out a bruise forming on her forehead. She had never said her head hurt, but a very nice size bruise blossomed. I called her pediatrician just to make sure I knew what to watch for in a concussion. She seemed totally herself, so I wasn’t too worried, and they weren’t either. That night when I was getting her ready for bed, I noticed a few tiny pinprick size purple dots on her tummy…nothing alarming, I just thought they were a little strange, but maybe a result of her fall. After I got the kids in bed that night, I couldn’t shake the fact that something seemed weird, so I googled the dots. That is the night my world turned upside down.
When you google those dots, leukemia is one of the first things that pops up, and I just knew. Deep in my momma heart, I knew. So many things started to fall into place…her grumpiness, her fatigue, her lack of appetite, her long standing runny nose, the random times she told me her leg hurt. Although every single symptom was EASILY explainable (she’s 2! She’s always been needy, she’s not getting a normal nap routine, she’s teething, she had an ear infection, etc), I just knew they all added up. For the next few days I wrestled with it. At night, I would break down and sob over her, but at daybreak, I would feel silly, like maybe I had just let the devil prey on my fear and my extreme exhaustion. I wanted to be wrong, oh I wanted to be wrong so badly…just to be one of those moms that turned to Dr. Google and knows what’s wrong. *sigh*
On Wednesday night, I noticed the dots had spread to her shins. Every time I got up in the night to feed Cole (which was a lot), I would research more, and every single time, it led me to the same place: leukemia. The next morning, after some advice from some friends, I called her doctor. They called me back within 15 minutes and said that with dots like that, they generally want to see the child pretty immediately, so off to the pediatrician we went. That was a terrifying drive. Once there though, the NP that we saw told me she wasn’t too concerned about the dots, and Brynna had another ear infection, so that would, again, explain the fatigue and grumpiness. She said the dots were probably just a viral thing. I was told that they couldn’t do bloodwork because the result would be skewed due to her ear infection. I wish I had pushed it, but honestly, I had NO idea about any of it, and I trusted that what I was being told was true. I just figured that was true, and we would wait and see…and I was relieved that they weren’t concerned about leukemia. After we got home from the doctor, Brynna took a 3 hour nap. This was on top of 3, 20-30 minute catnaps in the car she had already taken that day. The fatigue and exhaustion were really starting to take their toll. One other thing I had noticed on Thursday, were some sores on the tip of her tongue. I assumed that she had just bitten her tongue when she fell a couple of days before, and it was just healing from that. I completely forgot to show those to the doctor, and maybe that would have made a difference…I have no idea. I’ve been told that childhood leukemia is so rare that doctors don’t even really think to test for it…which then makes me wonder if it’s so rare, WHY US!?! Why our little girl!??
Over the next couple of days, she just got worse. The fatigue, the lack of appetite, the grumpiness, the dots, even some bruising along her back and on her hips. I think it was Friday night that I fully broke down to Ben. I just couldn’t shake the feeling we were missing something, and I wept, telling him I couldn’t lose her. By Sunday, it was obvious something was really wrong. She woke up and had a bruise on the top part of her ear, and it wasn’t the infected ear. We thought that was really strange. I also noticed a couple more sores on the inside of her mouth (she does NOT like to open her mouth for us, so it was always hard to see what was in there). I called the doctor on call and explained the symptoms. She encouraged us to take her into KidMed, so Ben and Brynna left our house around 2pm. He texted me a bit later to say they had hooked her up to an IV and they were doing bloodwork. When the bloodwork came back saying low red blood cells and low platelets, there was no more hope or doubt in my mind…I knew our little girl had cancer. They transported her and Ben by ambulance to the hospital and I met them there. When I walked into her room that day, I was SHOCKED by the decline in those 5 short (yet very long) hours since I had last seen her. She looked like death. She was paler than pale, the sores in her mouth had burst open, her lips had cracked, and more bruising had appeared on her face. As much as I want to forget that image, I know it will haunt me the rest of my life. As we waited for the final results, we felt they were preparing us for the worst, and Ben and I just wept together.
After tons of tests and bloodwork and procedures, at around 11pm on Sunday, April 8, 2018, our world was torn apart…they confirmed that it was leukemia. They said she had one of the highest (if not highest) white blood cell counts they had ever seen. Every time someone would ask us if we had any more questions, the only one I wanted an answer to was, “Will she live????” And it was the one question they couldn’t answer. Our oncologist finally told us, “I will be honest with you, your daughter is extremely sick, but we will do everything we possibly can to fight this.” And then we wept.
They spent the rest of the night and into the morning prepping her for 2 huge procedures to get her white blood cell count down prior to starting chemo. It was the longest night of my life. We weren’t allowed in the room with her while they did all of their tasks, and we were just in shock. Texting those words to our families, “It’s leukemia” was the hardest text I’ve ever sent. How do you associate that word with your 2 year old daughter!?!? How!?!?
This past week has been an absolute whirlwind. We have had some major victories, and some really hard news. We have had so many God sightings, it’s incredible. We have TRULY felt the peace that passes understanding in our lives. There is no other way we could have survived this nightmare week, other than God. I have so much more to share, but I will save all of that for another post, hopefully later this week. I do hope to blog regularly to keep you all up to date, and share prayer requests and praises.
Our little girl is a FIGHTER, and I KNOW she can and will beat this. I know God has equipped her with her personality and her fighting spirit so she can handle this awful disease. We welcome ALL prayer for our sweet girl. This is going to be a very long, very bumpy road, but we feel surrounded by the best possible community and know we are not in this alone.
As I work on my other blog posts, please let me know if you have any questions! I’m more than happy to answer any questions about any part of this process.
CURRENT BIG PRAYER REQUESTS
(1) Full and COMPLETE healing
(2) Full remission by Day 28 (May 7th)
(3) Full healing for her kidneys
WAYS TO HELP
We have been humbled and overwhelmed (in an amazing way) of the amount of support and prayer offered and sent our way. If you are looking for ways to help, here’s a small list. There is another big list being put together and I will share that once it’s complete!
(1) Go Fund Me – https://www.gofundme.com/brynna-kate039s-journey
I can’t even begin to imagine the astronomical cost of the care she is receiving. We are SO thankful for health insurance, but I know we will meet our out of pocket max every year for the next 3 years, and we are thankful for all the support!
(2) Meal Train – https://takethemameal.com/meals.php?t=MZLF1172&v=b0d8685d1e
(3) Amazon Wish List – http://a.co/ehKIdxW
This is an assortment of the most random things, from ideas for the kids to house stuff and everything in between.