My blue unicorn

This morning, while on our way to the hospital for a checkup, I was showing Ric  one of my favorite songs. It's called Unicornio Azul (Blue Unicorn) and it was composed by a Cuban musician, Silvio Rodriguez.

http://youtu.be/S_nafdtEEgs

This song talks about something being lost and the person is desperate trying to find it. Except, it never really says what is lost or who is lost. It is constantly referred to as "el unicornio azul". Of course he asked, what is "el unicornio azul"? As I am explaining to him all the various interpretations of the song, it dawns on me that I have my own personal "unicornio azul".  There is a part of me that is forever lost, that I will never find no matter what. I can beg for information, pay $100,000 or a million, like the songs says, but I won't ever find it. My "unicornio azul" is some of my peace of mind.

Ric's numbers today were great! Which means, he has now been cleared to spend the whole Summer in Puerto Rico with his dad. The WHOLE FREAKING SUMMER! I am having the hardest time with this. I know his dad will take fantastic care of him, but I can't help but to feel terrible about him being away from me. What if something happens? 

Of course, we have already scheduled an appointment with a heme/onc in PR, just in case of an emergency. I actually did that today and almost had a breakdown when I called at 2:00pm and they told me they couldn't take my call to make an appointment right now. That I had to call between 3-5pm to make an appointment. Which, of course, makes me wonder...what the hell is going to happen if something happens to Ric in PR? Will they tell us that they can't see him immediately? That they can't schedule a CBC immediately? I know it sounds terrible, but after my mom's experience down there with oncologists, I don't trust their system at all!! 

All day long, I try to disconnect from it with work and some music. It seems like every single song that popped out of Pandora was talking to me. 

"Slipping through my fingers"....yes! That is exactly how I feel. This whole situation is slipping through my fingers. I won't be there to make decisions or drop everything to help him out.

"...There are storms we can not weather" no shit! I have been stressing out for weeks about the possibility of him going to PR. This is going to be the longest Summer in history. I know I will survive it, I kind of have no choice, but it will be quite the storm to weather.

Josh even said "why don't you just take the kids and spend the Summer there?". Well, I can't do that. I need to learn to deal with this, no matter how hard it is at this very moment.

"...inside my heart is breaking, my makeup may be flaking, but my smile still stays on....I have to find the will to carry on...the show must go on!" Holy crap! This is when I decided to turn off Pandora. 

http://youtu.be/q3ol9Nx2aAw

It is what it is. There is no indication whatsoever that Ric will relapse while in PR. I will keep on moving forward, so he knows he can move forward too. 

"Mi unicornio azul ayer se me perdio, y puede parecer acaso una obsesion. Pero no tengo mas que un unicornio azul. Y aunque tuviera dos, yo solo quiero aquel, cualquier informacion la pagaré. Mi unicornio azul se me ha perdido ayer, se fue."

 (I lost my blue unicorn yesterday and it may seem like I am obsessed with it, but I only have one blue unicorn. Even if I had two, I only want that one. I will pay for any information. I lost my blue unicorn yesterday....it's gone) it sounds better in Spanish, but you get the gist of it ;)

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.

5 days!

We are 5 days away from Ric's next CBC test and 9 days away from going on vacation!!!  I don't know which I am looking more forward to. Well, let's not kid ourselves! Definitely the CBC.  We need good numbers so I can actually enjoy our vacation. The last thing I want is for shit to hit the fan while we are in the mountains, in the middle of nowhere, no Dr. Nielsen, no Dr. Eslin, no Arnold Palmer Hospital.  I hope the evil antibodies take a vacation too and leave us be for a bit.

Ric has been feeling great! His face is back to normal. There's no more moon shape, swollen face from the steroids. His dose is so low (1/2mg/day), thank God! Last time we did tests his numbers were normal. Normal normal, not Ric normal. We couldn't believe it, but it did happen! I am crossing fingers that this time around they are good too!

I just don't want to see too big of a drop because there is no way in hell I would leave town if his numbers are super low. Which would suck, big time, because it is not fair for the rest of the family. But, what do you do? Risk it? Assume we'll find a hospital that can help us if anything happens? THIS CONTROL FREAK??? Nope! THIS control freak would need to stay here.  At the end of the day, we will do whatever the doctor says we should do, which will hopefully be GO HAVE FUN!!

5 days....5 days to answers. Waiting sucks ass!

Strength and endurance

We got CBC results yesterday and they were great! Three weeks ago Ric had virtually no white blood cells and this week he is in normal ranges. Not normal for Ric, normal for the rest of us which is even a bigger deal! Prednisone has been weaned down to 1/2 mg/day!

He was at school when I got results, so when he came home I told him the news. His reply "So, I don't have Evans anymore? Am I in remission?" To which I replied "This week you are doing fine. Remember, this is a forever thing and the doctor won't call remission until a year after treatment. Focus on this week! This week your numbers are great!"

Ric has taken this whole Evans situation pretty well. It's in moments like yesterday that I can sense his stress with the illness. It breaks my heart to have to tell him, you still have Evans and it will not go away. But, I feel like I can't paint too much of a pretty picture for him because he won't know how to handle this later on in life when I'm not there everyday.

I truly admire Ric. Even though he drives me crazy, as any 15 yr old would his mom. However, Ric deals with all this shit so well. His strength is truly admirable. I remind him of that when he talks about Evans. I always tell him you are so strong, emotionally. Even when he has breakdowns. My biggest thing is, you can have the breakdown, but you pick up the pieces and pull yourself together afterwards.

For me, Ric is endurance personified. I can run a gazillion marathons and still Ric will be stronger than I am. He has all the reasons to break down, go into depression but he chooses not to and that is amazing. 

To endure in spite of overwhelming obstacles! If I have had any part on teaching him that, I have done somehing right.

Are we at it again?

Yesterday was quite a day. My mom had an appointment with her oncologist to see if she had hit remission. Well...awesome news...she has! Mom is in remission of pancreatic cancer! As soon as I get the news, my first thought was "good! one less thing to worry about! We may have a peaceful few months."

WRONG! Ric comes home from school and nonchalanty says " I think I have petechia." I look and it certainly looks like petechia. Called the pediatrician, went in...confirmed! Yep, petechia.  Blood is drawn and at 9pm she calls and says "No school tomorrow, anc is at 300 he can't get sick now."  Those damn white blood cells.

I was a bit taken by surprise cause last week his numbers were great, you know for Ric. That's how this shit works. One day you are fine, one day you have no neutrophils, or platelets or red blood cells. At least platelets are fine and I don't have to worry about him bleeding to death. We just need to make sure he doesn't get sick. I am waiting on my heme/onc to call to see if he will increase his prednisone dose again or what. I am almost certain we will have CBC's every week for the following weeks until we get him under control, again.

A friend asked me this morning how I was doing. All I could tell her was that I was pissed. I was pissed that the good news of my mom hadn't totally sunk in when Evans decides to fucking show up. Seriously! It had been and hour and 45 mins from good news that we get the next challenge. It's definitely keeping me on my toes.

I debated whether to send the other two boys to school or not today. I ended up sending them, cause I can't disrupt their lives too much. However, they know that as soon as they walk in they have to take a shower and be on top of the hand sanitizer. William asked if he needed to wear a face mask again, which totally breaks my heart because I know he worries so much. I said he didn't have to, but that hand sanitizer was a must. Jona looked at me with wide eyes and asked "does he have to go to the hospital again?", which totally breaks my heart again because this shit not only affects Ric it affects all of us. No hospital, as of now, I explained.

I keep thinking this time we all know what to do. This time it won't be so hard. This time it won't be such a shock. But, it kind of still is hard and a shock and the same damn roller coaster of emotions.

The truth of the matter is that bottom line, it is what it is and we have to deal with this forever. I choose to be strong.