Lizzy and Lori finally got to come home yesterday (Wednesday). She was unexpectedly admitted on Saturday after running a low grade fever coupled with really low blood counts. After getting a blood transfusion and additional platelets injected, her counts rose high enough that the doctors were comfortable with letting her come home.
Lizzy’s blood counts continue to trend downward. Her hemoglobin has dropped below 7.0 and that is generally the threshold at which the doctors recommend a blood transfusion.
Lizzy has been admitted to Cincinnati Childrens early this morning (Saturday). She was very lethargic Friday so we were instructed to take her to our local hospital for a blood draw to check her counts. Her counts were really low, but not to the point of needing a blood transfusion. We were told to just monitor her.
Today (Sunday, Aug 19) wraps up the first of what will be several 5 day stays at the hospital. It also happens to be our oldest son’s birthday, so Happy Birthday Connor!!!
Despite being confined to the 5th floor for a solid 5 days, and most of that time staying in her room, Lizzy did amazing! All of the nurses, doctors, students and anyone else who came into our room would make a comment something like “wow, I wish I had her energy” or “boy, she sure does have a lot of energy”!! Yep, that’s our Lizzy!!
Wow – what a party!!
We celebrated Lizzy’s 5th birthday yesterday and it was a blast!! Of course it all starts with the birthday cake – Elena of Avalor had the honor of being the decoration of choice for the cake.
(Grandma and Lizzy)
She loves Elena, and little did she know, Elena would make another appearance late into the night!
Next up – Head Shaving!
Lizzy shaved Daddy’s hair first (with some assistance from Mommy), and then it was Daddy’s turn. It was a surreal moment. I’ll have more on that in a moment.
And finally, the Deed was Done!!
(Lizzy, Daddy and big sis Treasure)
We made sure to collect all of Lizzy’s hair so she could put it under her pillow when she went to bed – after all, the Hair Fairy only comes to little boys and girls who shave their head and put their hair under the pillow. And lo and behold, Lizzy woke up this morning and the Hair Fairy had indeed paid her a visit!
(Lizzy with her Elena guitar from the Hair Fairy)
Let’s get real for a moment. Shaving Lizzy’s head last night was one of the hardest things I’ve ever done. Lori and I were both trying to put on a good front and be happy and excited for Lizzy on the outside, but on the inside, we were both crying our eyes out. In fact, once the shaving party concluded, Lizzy was surrounded by siblings and grandparents and aunt/uncle, and Lori and I slipped off to the side, held each other and just balled our eyes out. It was hard.
But as we proceeded back into the house to commence the opening of presents, an amazing thing happened. Lizzy became more and more beautiful. I didn’t think it was possible for her to get any cuter, but she did. Those big brown eyes, that contagious smile and the way she moves her eyebrows up and down all became even more prominent than they were before.
Earlier this week Lori received a text from a new friend of ours – Hannah. Hannah and her husband have a little girl who has gone through the same thing as Lizzy. Hannah had seen the post about the upcoming head shaving and she sent Lori a very sweet text. In the text she mentioned how before her daughter’s hair fell out, she was petrified and heartbroken. That’s how we felt. But she went on to say that after the hair fell out, the miraculous happened – they just saw her face – her beautiful face. That text gave Lori and I great comfort, and we experienced the same thing. Just the beautiful face of our sweet Lizzy!
But something else happened along the way as well, but it didn’t quite dawn on me until this morning. I took an exercise walk this morning (a rare event!) and as I was walking, I felt this incredible sense of freedom. And it was confusing at first. I know there is freedom in Christ, but man, oh man, Lori and I have been absorbing some serious body blows lately and we’ve felt anything but free. We have literally just been in survival mode, trying to absorb the most recent body blow and waiting for the next one to happen. Bam, boom, upper cut, left cross, right jab. Hit after hit after hit. Feeling helpless and a victim, a participant in a nightmare that we didn’t want to be in. Hearing the doctors tell us bad news after bad news and dreading what was coming next.
And then we shaved her head.
And suddenly, we weren’t victims anymore. We had taken control of the situation. We looked at the side effects of her hair falling out and said “Fine, you gonna make her hair fall out? well we are going to beat you to it and shave the whole head! Ha – take that. You want to take a shot at us? Well we are fighting back. And guess what? The same power that raised Christ from the dead is alive and in us, so we are going on the offensive. No more victims in the Brooks household. We are going to be bold. We are going to be Loud and Proud. You want to take a shot at us? Go ahead because we got twice as many shots coming back at you, and ours is powered by the creator of the Universe!!”
I never knew a shaved head could be so beautiful. So liberating. So powerful. So freeing.
Hello fellow sojourners!
Lizzy wanted me to let everyone know that she is celebrating her birthday this Monday (Aug 13)!!
As part of that celebration, she and I (Dennis) are going to have a head shaving event 😱. Since you all have been so gracious to go on this journey with us, we want you to be a part of the head shaving event with us!!
(Before picture. Tune in Monday night to see the After!)
Since we have to limit Lizzy’s exposure to germs as much as possible, and because many of you live outside of Kentucky, we are going to attempt to stream the event on FaceBook Live. I don’t know exactly how that works, but we are banking on our 17 yr old to figure it out and make it happen (shout out to Colson!).
We are going to stream it using Lori’s FaceBook account, so if you aren’t currently friends with her, you will need to send her a FaceBook friend request.
The plan is for the head shaving to occur at 8:00p Eastern Time this Monday. With that said, we are rarely on time for anything, so I can’t guarantee it will be right at 8p but it will be somewhere in that vicinity!
Hope to see you Monday!!
Lizzy had an outpatient treatment today and as far as treatments go, it was “routine”. One of the nurses had on a t-shirt that had words on the back that totally captured how Lori and I feel about our little Lizzy. See for yourself . . . .
In case you can’t read it, it says “Sometimes, real Superheroes live in the hearts of small children fighting big battles”. Lizzy is a Superhero indeed!!
On Monday Lori took Lizzy for a blood draw and her ANC level had bounced back to 1,170 (last week it was 20). It wasn’t quite back to “normal” range (1,500 – 8,000), but close enough, and a huge rebound from the week before. We were grateful for the 1,170 number, and it meant today’s treatment could proceed as planned. The treatment today was only 1 drug, so we were only in clinic about 2.5 hours (relatively speaking, that’s a really short clinic visit!).
On Monday night, I was perusing some viewing options on Amazon Prime and I came across a TV show from the 70’s called The Walton’s (yes, Lori and I remember The Walton’s from when we were kiddos). So, I told the girls I had a show I wanted them to watch. The show was actually Season 1, Episode 1 and it was called “The Foundling”. It was about a little deaf girl that was secretly abandoned on the Walton’s doorstep by her mother because the father didn’t think they could take care of a deaf girl. The Walton’s took her in and learned how to communicate with her. The parallels to our situation were obvious, but what was really cool was to watch as the girls were totally enthralled with the show. It kept their attention the whole time, and they were even talking about it later that night and into the next day. I think it just goes to show that a good story about people loving people is always a hit!
Yesterday I was having lunch with a friend when Lori texted me. The text said “The hair is coming out!!”.
(bag of hair waiting for The Hair Fairy)
We were told the first go around that Lizzy would probably lose her hair, but she never did. So this time around when we were told she would lose her hair, we sort of shrugged and didn’t think too much about it. But now it looks like it’s going to happen. And it’s turning out to be a much bigger deal than we anticipated.
For Lizzy, it’s very exciting for 2 reasons. #1 – during the first treatment cycle, she was given a book that talked about kids going through chemo and losing their hair. When that happened, the kids got a visit from the Hair Fairy – think Tooth Fairy only with bigger gifts under the pillow! So, Lizzy is very excited to get a visit from the Hair Fairy. #2 – Lizzy and her daddy (me) agreed last cycle that if Lizzy’s hair started to fall out, together they would have a head shaving party. Well, her hair never fell out so we never had the party. Now that it has started to fall out, she very much wants us to have the head shaving party. So, there’s a good chance that the next time I put up a post on this Blog, there will be a picture of a couple of shiny heads!!
But beyond Hair Fairies and head shaving parties, I think the hair falling out is impacting Lori and I much harder than it is Lizzy. And I think that’s because for the first time since this journey started back in November, there is starting to be a visual reminder of this battle we are fighting.
You see, during the first treatment cycle, there were lots of times when Lizzy and Treasure would run and play and laugh and for the briefest of moments, you could find yourself not remembering that she has cancer. You could just get caught up in the moment and be carefree. The cancer was still there, but there was no visual reminder that it was there.
That changes when her hair falls out.
There will still be times of running and playing and laughing with her sister. And we will want to be caught up in the moment and be carefree. But the visual reminder will be there. Constantly. Every moment of every day. And it will be hard, no, it will be impossible, to have even the briefest of moments of not remembering that she has cancer. And to think about the battle we are in. We know we are not alone – God is with us and fighting for us.
Please don’t think I’m complaining or whining. I’m not. I’m being honest. It’s just that Lori and I will soon have a very sobering visual reminder of where we are. I don’t regret for a second where we are. I regret Lizzy has cancer, but if she is going to have cancer, then Lori and I are 100% thankful that God brought Lizzy into our lives so that we can go through this journey with her. We absolutely would not want it any other way.
After all, not many people can say that every day they get hugs and kisses from a Superhero!
First let me apologize for the delay in getting this Post sent out. For the first time since this journey began back in November, I had to miss one of Lizzy’s appointments due to work travel and by the time I got home late last night and had Lori fill me in on the events of the day, I was too tired to type. Thankfully our 17 yr old son Colson accompanied Lizzy and Lori on the trip and filled in for me – he’s such a great kid!!
Lizzy had an outpatient treatment yesterday that consisted of only one drug. However, prior to treatment, she always has a blood draw so the doctor can check her various “counts”. We were a bit surprised to learn that Lizzy’s ANC was 20. Normal range is between 1,500 – 8,000. During the 1st treatment regimen from Dec – April, her ANC never dropped below 600 and was usually in the 1,200 range.
In basic terms, ANC is a measure of how prepared your body is to fight off infections. So, the lower the count, the less able your body is to fight. That’s not good. It means that we have to REALLY be careful about germs. If Lizzy is going to be around people, she will need to wear a mask. We are cleaning and sanitizing everything and entering into the “quarantine” phase for Lizzy. And at the same time we are trying to keep Treasure’s life as normal as possible. Which creates some problems – when Treasure goes to tennis lesson, Lizzy wants to go but can’t. Lizzy wants me to take her to the lollipop store, but that’s not a good idea right now. You get the picture.
The drug Lizzy received yesterday always gives her a headache. When I got home last night, she had fallen asleep right in the middle of the floor while Lori was fixing her a snack. The clinic days really wear her out. I took her in my arms and just held her, watching her sleep. Sometimes it still doesn’t seem real – this battle we are in.
She also ran a low grade fever all through the night. It never got above 100, but Lori got up every hour during the night and checked it just to make sure. We’ve been told that if she ever gets a fever that reaches 100.4 or higher, we have to get her to the emergency room immediately so she can start receiving IV antibiotics. So anytime she runs even the slightest temperature, we are on edge, knowing that we might be making a mad dash to the ER, no matter what time of day or night.
If you read the last post (“In the Eye of the Storm”), I talked about how great this past weekend was, but we knew that the storm was still out there. Well, the winds of the storm have started to pick back up. But that’s ok. We have been on our knees in prayer the whole time – good times and bad, in the calm and in the wind – and that’s not going to change. And so many of you all are daily praying for us and sending us notes of encouragement and texting your support, so we know we are surrounded and supported by an army. We love you all so much and can’t say thank you enough!
This is hard, but God is bigger. We are weak, but God is stronger. We cry and God wipes away our tears. We stumble and God picks us up. And when we think we can’t take another step, God carries us. So yes, this is hard. But we know beyond a shadow of a doubt that God’s got this, and our Lizzy may be small, but she is fierce!!