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The News.

12/7/2019

14 Comments

 
"An ambulance ride? What...is...happening?" 

This is where I found myself Tuesday night, looking down at him laying on the gurney, Landon looking as shell-shocked as I felt. It's alright, I said to him. Cool ambulance, right? It's alright, I said. I mostly believed it.

It had been a long 3 weeks or so. Landon was sick on and off, mostly on, the entire time. A couple of visits to the pediatrician, a couple of visits to Urgent Care, antibiotics, hives, tylenol, benadryl, persistent cough, pneumonia but maybe-not-we-can't-really-tell, prednisolone. Where was his energy? Where was his color?

After a blood test and X-ray was ordered and given, we went home. But not for long.

Another blood test was needed. The machine might have made a mistake when it analyzed the draw. We were told to go the ER right away. This...was disconcerting. Also, getting blood drawn again angered me a little. I absolutely hated watching him go through it the first time. Now twice in a day? 

The new tests confirmed it. Red blood cell counts low. White blood cell counts really low. Neutrophils, the wbc that works as the first line of defense against bacteria, zero. None.


Amy and I had just enough time to run home separately and grab some things. We were going for a ride.

By the time we were out of one ER, into another at Boston Children's Hospital, and into a private room, it was 3:00 am. That's a long time to be awake for anybody, even worse for a 4 year old. He was tired. He was drained. But, he was still patient. He was as tolerant as he could be. He was being so brave.

It was a whirlwind couple of days after that. I couldn't even tell you how many times blood was drawn, fevers were addressed, IVs were set or reset, and questions were asked. Questions, without answers. Lots of "We don't know yet", and "It could be this it, it could be that". Maybe viral. Parvovirus?  Nope. Fifth Disease? Nope. Mono? Nope. 

And on the list, it sat there, not crossed off yet. Leukemia. 

And so it was, on Thursday. A bone marrow biopsy was taken from his hip, under anesthesia. We had our first visit to a "consult room" soon after. It may as well be called the "bad news" room, a cramped and confined space for private conversations where most of the time they tell you things you don't want to hear. The bone marrow was really hard, packed with extra cells. It was getting harder for the doctors to hide what they already suspected. She wanted to be 99.99999% sure before she could say for sure. In our hearts, Amy and I knew that meant she was already 99% sure. 

​It was official a couple of hours later. 

There is a lot of support here. We've gotten plenty of advice, loads of resources, and lots of love to go around. We were encouraged to keep a journal, and I think this is going to be that, for me at least. It's only been a few days, but I am constantly amazed at how strong Landon has been so far. He's only 4 years old for heaven's sake, he shouldn't have to deal with this. We will all be brave together.​

                                     (Leave Comments by Clicking on Blog Title)
14 Comments
Ash
12/12/2019 01:53:59 pm

Love you guys so much!

Reply
Chris Coffey
12/12/2019 08:04:40 pm

Jamie and Amy, I am at a loss for words. I can only imagine what you and Landon are going through. You will all be in my thoughts. Stay strong, stay positive, stay brave

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Andrea Mullarky
12/12/2019 09:04:09 pm

Jamie and Amy... there are no words. I am keeping Landon and your family in my prayers, thoughts and heart.

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Julie Barcelos
12/12/2019 10:20:15 pm

Dear Amy and Jamie...all of us at Speech we’re devastated when we heard the news. Our thoughts and prayers are with you as Landon and you go on this most unwanted journey. I love the website and the positivity you put forth. Our best to Landon and to you both.

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Laura Gardner
12/13/2019 08:20:39 am

I had no idea you were going through this. Sending prayers and lots of love. I’m so glad you made this website.

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Karlene Ball
12/13/2019 11:27:27 am

I'm so sorry your family and Landon are going through this. You must all be exhausted from worry. Keeping you in our prayers. How can we send him something?

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Bonny Gifford
12/13/2019 11:45:24 am

Dear Jamie and Amy...I can't imagine how your heart and soul feel. Sending thoughts and prayers that you continue to be surrounded by loving family and friends.

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Angela Medeiros
12/14/2019 08:51:27 am

Amy and Jamie, I can't even begin to imagine what you are going through. I am so very sorry that your family is going through this. Sending love, positivity and prayers to your family.

Reply
Charlene and Toby Monte
12/16/2019 01:35:22 pm

Toby and I are praying for you every day. We love you very much. You are great "kids" and awesome parents. If there is anything we can help you with, please don't hesitate to call. I'm retired now and can help during the days. Huge Hugs to you both.

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Niki Zhe
12/16/2019 09:19:47 pm

I am keeping you all in my thoughts and prayers, and wishing you strength and positivity as you navigate this journey.

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Anne Brown
12/18/2019 12:05:49 pm

Jamie & Amy I am so sorry that your family is going through all of this. I can not even imagine how hard this must be. Sending healing prayers and thoughts.
Anne Brown

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Kathy Souza-Pontes
12/18/2019 04:57:09 pm

You’re all in our thoughts. Please reach out if you need ANYTHING. We’re all anxious to help and just need to know how we can do that. House, food, laundry, errands... you name it- we’ll do it. You all concentrate on your family and Landon. DMS is in “help mode” too. Love to you all!!

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Peter Crane
12/20/2019 10:45:31 am

Im so sorry to hear of this news.
My prayers are with you all.

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Peter Art
12/28/2019 07:05:27 pm

Sup Amy and Jaimie and Landon, Love the site, thank you for sharing! Keep up the brilliant work, and see you guys around!!! We call dibs on being the ones you call first if you need anything brought up to Boston!

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    I'm Landon's daddy. I'm super amazed at how strong and brave he is, and you should be too!

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