Not so subtle reminders

Someone died because of Evans and ALPS (which is a bit more complicated than Evans) this past week. As we get good news with Ric's numbers being pretty stable, there is still that reminder that he can die from it.

That thought is always far away from my mind. Our doctors are constantly telling us that as long as he is closely monitored, he won't die. Then, I hear about someone dying because of it and I feel like I can't breathe. Like there's an elephant sitting on my chest, when I really should be happy that Ric's numbers are stable!

Evans' world is unpredictable and scary. Today, we have Ric and he feels good and his numbers are pretty good. That is all that matters now. Death is not an option.

Normalcy?

For the first time, Dr. Eslin used the term remission this week. We went for Ric's checkup this week. He has been off medication for two weeks now. We were all very anxious to see what his numbers looked like. Even Dr. Eslin was anxious to see! Numbers came back good! There was a bit of a drop in platelets, but still in safe zone and everything else looked fantastic. Unbelievably so, white blood cells are behaving! They are usually the stubborn little bitches.

Of course,  I asked if Ric was in remission. To which the Dr replied "Yes, we are at that stage. However, we'll keep testing every two weeks for now in case something changes." So....yes we are kind of in remission, but waiting to see how his body will react unprotected (without meds).

His first few days off of prednisone, Ric was super tired. He came back from school one day and took a 3 hour nap! I texted our pediatrician and she said it was to be expected. Did you know that prednisone produces hormones our pituitary gland usually produces and when you are on meds, the pituitary gland is on vacation? So, when they took Ric off the meds, the pituitary gland realized it had to work again and it was working hard = Ric being tired. The things you learn! Other than that, he has been fine! No bruises, no petechiae, no nothing. We have a "normal" teenager in the house.

It's been a long year. We had stayed the course, we have followed every single direction given to us. We have dealt with every hand that has been dealt to us. We are ready to welcome a few weeks, hopefully months, of some normalcy. We have showed Evans who we are. Stay away for a while! 

One year ago....

Brace yourselves...this is a long one!

One year ago we were sitting at Arnold Palmer Hospital waiting for doctors to come up with a diagnosis for Ric. His lymph nodes were enlarged and he was bleeding from his nose and mouth. He also had little red spots on his chest, which we later learned are called petechiae. They were doing a bone marrow aspiration to see what the hell was wrong with him. My friend Vanessa sat by my side while he was undergoing the aspiration and uttered, the now famous words in my house, "You have to learn to sway like the palm trees during a storm."  I can't explain to you how many times I have had to remind myself of that. Just sway, just sway and don't lose it. At the end of the day they tell us it is not cancer, but something else called Evans Syndrome. That this is very, very rare and there is little research so treatment will be hit and miss and will take at least 8 months to a year to figure it out.

Life had fucked us over! That was my immediate reaction. Why Ric? Why us? Why this to our family? Seriously? We are good people, we don't do any harm and we get this? I couldn't believe it. I was very, very close to hit people in the face every time someone would tell me "God is in control". Really? God?? Where the hell was God? I know this sounds horrible, but all that goes through your mind when your child gets diagnosed with something not even doctors understand.

I didn't know how to even react to that. All I could ask the doctors was "On a scale of 1 to 10, 10 being cancer, which in my mind is the worst, where is Evans?" 6, they said....6. Ok, we can handle a 6, I thought. We learned real quick that, as long as Ric is closely monitored he won't die, so we monitor him very closely, maybe sometimes a little too close for him, but I am not taking any risks.

 How in the world am I going to handle this? I decided to handle this as I do marathon training. First, with my head, then with my personality and lastly with my heart.  I had to run the first part with my head just to understand what Evans was all about. I read everything google had to offer and asked as many questions as I could to our doctors. Once I understood Evans, I decided there was no point in getting in a hole and all depressed because Ric was watching every single one of my moves. I know he was emotionally leaning on me and there was no way in hell I was going to let him down.  That doesn't mean we haven't had our moments. We had meltdowns, but we picked ourselves right back up.

 

We started with steroids, when that didn't work we went into chemo with Rituximab. Four rounds. After the first round Ric had hives, which kept us on our toes for a whole week. After the hives, he was fine. He finished chemo with no side effects. His numbers started coming up. We went from blood tests every week to every other week to later every three weeks to even, later on, 6 weeks.

During this time he was still on prednisone and after the chemo the doctor decided to start weaning him off of it. This was June. Since June we have been weaning this boy off of steroids with ups and downs, but no more hospitalizations!!

Dealing with Evans is a massive roller coaster. I just kept reminding myself we had survived the hardest part. The waiting on getting diagnosed, chemo and all that entails. I am here to tell you, sitting in that chemo room is overwhelming and inexplicable. I do not wish that on anyone! No one should have to go through that! NO ONE!! Especially, not kids!

We went for tests a few weeks ago and Ric's numbers were good. I was worried about not being able to go on vacation and the family suffering again. But, we were able to go and we had a fantastic time in the Blue Ridge Mountains. We all enjoyed the outdoors and the peace and quiet. Ric loves going to the mountains and he deserved that trip! This week we went for tests again and Ric is officially off meds!! OFF MEDS!!! We have to go back in two weeks and test him again and see where we are. He looks good and feels good! I was overwhelmed with emotion when the doctor called and said "Get him off the prednisone". Who knew those words will take such a weight off my shoulders and bring such strong emotions to the front.

 As I sit here, a year later, I can't help but to think there are a few people I need to thank for letting me lean on them and be my village. My husband Josh, as always, my rock. I couldn't live without this man (and he couldn't live without me either, let's face it...hahaha!) Every time I am nervous about tests and results he always finds a way to give me perspective and comfort me. Our family, my mom, my inlaws, cousins, my brother. All of whom worry endlessly about Ric and his health and give us their unconditional support as well. My friends, my DEAR friends, Pam, Julie, Juliana, Chris, Amanda, Michelle, Ivett, Vanessa, Marie, Marianne, Nancy, Julie M, who have been there EVERY STEP OF THE WAY with us. Every tear, every anxiety, every moment of joy we have shared together in this journey. I couldn't be any luckier. My out of town friends, Willie, Myrsa, Marilia, Arleene, Maritere (my second mom), Coppelia who have given me unconditional support with phone calls and texts and have also heard me cry on the other end of the phone. I am thankful for my strong village.

Bottom line, it's been one hell of a year. It has tested me and my family. But, at the end of the day it made us stronger. We are stronger as individuals and stronger as a family unit.