Last test of 2014

Ric has been out of remission for a few months now. As it is to be expected with this, he has been up and down. Today was the last CBC of 2014 and his counts were pretty good! 115,000 platelets, great for Ric; 4.82 white blood cells, actual normal, as in you and I normal! Neutrophils are a bit low, but not low enough to be concerned.

 Ric was in remission for more than half of the year, which is great in our world.  We have been on a wait and see plan, yes that is the actual medical experts plan, for a few months. Shit hasn't hit the fan yet! I'll take it!

I have seen Ric struggle with the thought of being out of remission. What lies ahead won't be easy, but it won't be impossible. The other day someone in the hospital said to me "You are not alone" and I know that, but for whatever reason that simple statement made my stomach turn. I had never seen myself as the mom of a chronically sick child. I have always seen myself as the mom who has no choice but to be strong for her children. I guess at that moment I was looked at as the mom of a chronically sick child. Maybe it was the look of pity in her eyes. I can't quite put my finger on it, but I refuse to be that mom.

2014 was a relatively easier year than 2013. 2014, dare I say, was a better year, a more peaceful year. We are all one year stronger.

Thankful for the fight!

They're back....

Ric had his follow up appt today. When Dr. Eslin saw him he said "it is short of a miracle that you have been off of meds for 7 months!". He then gave me that look...yeah, that one that said "wait for it" and then the words came out of his mouth "we have seen up to 6 months off of meds. Very, very rarely a year off of meds. It is time to watch how his body will behave." 

For a split second I thought maybe Ric can be the exception to the "rule"? But I knew that shit was coming down. I have basically known for two weeks now! He hadn't had any bruising, bleeding or petechiae. However, his eyes have been kind of full of little blood veins every other day or so, which is something that happened at the beginning of our Evans' journey. 

Hours later I get the dreaded call! Let's be real! Even when they call with good news, seeing that number on my caller id always makes me stop breathing for a moment. White blood cells are good, anc is good and platelets are low. 60,000 platelets she said and my heart sunk. Coombs positive (this is the test they do to ck if the evil antibodies are back)..fuuuuuuuck!!!! No meds for now, Dr Eslin wants to draw blood again in two weeks and see where we stand. If symptoms arise before two weeks, then we go. 

In my head this sounded like "they're baaaaack!" from Poltergeist. Just like that! 

I am thankful that we got 7 months of peace. I reminded Ric about this. He has been a bit in shock and awfully quiet this afternoon. He said "I don't want to be the sick kid". These are the moments where I truly don't understand where I get the strength to say "You are not your disease. Your disease does not define you. HOW you deal with it does! So, chin up! You know this is something that will come and go. You will have some good months and some challenging ones. It is what it is. We will deal with what comes."

 I can't even find the words to explain how this makes me feel. Sometimes I see moms on Facebook losing their minds over a simple cold. Don't get me wrong, thank God they are only dealing with a cold and no one wants to see their child suffering! But I can't help but to think "try that a million times worse and with doctors really not knowing how to treat it." I don't mean to sound like an insensitive bitch, but I feel like one thinking that.

This time I feel like we know what we are dealing with. Now, I know chemo is a real possibility again. Now, I can somewhat mentally prepare myself for that because sitting in that room is NO FREAKING JOKE! Now, Ric knows what to expect. Now, Ric has a reminder that yes this is here, this is real and he has to deal with it again and again and again. Now, we know the walls will tumble, but they won't fall.

Hives are just hives

So, yesterday doctors had to do a full autoimmune  checkup on child #2, William. He's been having hives since Sunday. They come and go. He is also complaining of joint pain, but that is to be expected with hives.

Hives can be just hives, said the dr, but we want to make extra sure. Lymphnodes are a tiny bit swollen around his neck. But, that can also be due to a viral infection. These can also bring about hives.

Nevertheless, a full autoimmune check up sent me to a very dark place I rather not visit. It reminds me so much of when we started dealing with Evans. Ric is so concerned for his brother, it breaks my heart. It breaks my heart to hear him say "they told me not to worry at the beginning too, before we knew what we were dealing with. I am expecting the worst, hoping for the best!!" Those were the words out of my 16 yr old's mouth. Those are my words! Prepare for the worst, holing for the best. Somehow, hearing them come out of him broke my heart into a million pieces. I could see and feel the anxiety coming out of him. It is almost as if we both have autoimmune PTSD. 

This shit has us traumatized! As soon as they told William yesterday it wasn't strep he asked "is it something serious? Like Evans?" Holy shit! This is the reality we live in. There is nothing simple anymore. It doesn't matter how I try to appease them both, they are still worried sick and I can't take it away from them. 

Our pediatrician said not to worry, yet! Hives can be just hives! Nothing else! That's what I keep telling them and that's what I keep telling myself.

A friend told me today "kids feel deeper than we give them credit for". She is so right and that is what breaks me. Because I can't fix it. No matter how hard  I try to reassure them, the anxiety of being seriously sick is a reality in our house for one of them. Therefore, they all think that could be their reality too.

Normal for us is special

Ric is back home from his Summer in PR with his dad.  He was able to enjoy his Summer without Evans rearing its ugly head.

As soon as he came home, we had an appointment with Dr. Eslin. His numbers were great! They were actually in normal, normal ranges....not Ric's normal! He explained to us that the chemo is totally out of his body now, yes...the one from last year. Now, it's a wait and see period. He is not expecting for hell to break loose, so Ric gets to be CBC free for 3 months. 3 months!!! Holy crap! CBC's have become such comfort for me! Don't get me wrong, I am happy he doesn't have to be poked and proded for a while...but usually Ric doesn't exhibit symptoms, so how will I really know that all is good? I guess I have to keep myself busy!! Marathon training should help with that.

Today, Ric got his learner's permit. This is a very special moment for every teenager on Earth! It was just like that for Ric too. In a world where we have a constant worry and concern it is nice for him to still be able to have this "normal teenager moments". Ric understands that if his platelets are under 100,000 there is no driving for him. Well, he understands now....we'll see when the day comes.

Today, I am thankful for:

1) normal life changing moments

2) a very well adjusted teenager

3) supportive family and friends

4) car insurance

Count your blessings, celebrate your victories

Ric has been gone for 5 weeks. He is having the best time with his dad in Puerto Rico. He has been in basketball camp, so he is in heaven! He has been feeling well and has been able to participate fully in basketball camp.

This past week he had a CBC done. Platelets are looking great at over 200,000, which is fantastic! White blood cells went down a bit, but still within his "new normal". Those pesky white blood cells are so freaking stubborn!!!! He is still off medication, so the fact that he has been pretty stable gives us a lot of peace of mind.

Today, I am counting our blessings. I am so happy that he is getting to enjoy his Summer in PR. So happy he gets to spend time with his dad and extended family down there. So happy he has gotten to have normalcy. Last Summer we were in the middle of chemo. This Summer he is having a blast and is stable. That is the biggest blessing. 

I have dealt with him being away fairly well. I am actually enjoying the break. I know that sounds awful, but not having to worry 24/7 about possible symptoms arising is nice.  I feel it is giving me strength for when we go down the roller coaster again. We miss him terribly, though. The boys are missing him terribly too! This morning at breakfast William said to me "When Ric comes back he is going to be so much taller than you!". That is another blessing, the fact that this terrible thing is still allowing him to grow as any teenager would.

The biggest blessing of all, of course, is that today we are good. Today, Ric feels fine and it doesn't look like shit is going to hit the fan anytime soon. Today, we all have our health and, seriously, what is more important than that?

A year after chemo...

Numbers are good!!! White blood cells at 3.6, platelets at 152,000, hemoglobin at 14 and anc at 1270! Awesome numbers for Ric!!! We are still waiting on Coombs and B cell tests. We should have those tomorrow.

It was very stressful walking into tests this morning. Ric leaves Sunday to spend the Summer in Puerto Rico. I needed good numbers to make peace with this whole situation.

Dr Eslin, as usual, was amazing. He gave us a letter explaining Ric's case and with his cell phone number in case PR doctors need to get a hold of him. He included Ric's last cbc and will email me today's results so I can take those too. 

He also said "it's almost a year since rituximab treatment (chemo)". Yep! That was one anniversary I could live without anyone reminding me. By this time last year, we were rushing Ric to the hospital because he was having some type of reaction to treatment. Hives! I wish I could delete that off my mind. 

The visitor sticker they give me every time we go there is the picture of the day we first started dealing with Dr. Eslin when we still thought we were dealing with cancer. I hadn't even thought about the damn picture until today when he reminded me.  OMG! I have aged so much in a year! You can see behind the forced smile that my soul was crushed. 

But, here we are a year later and his numbers are great! I love Dr. Eslin, Dr. Nielsen and their crews. They treat us all with so much love and knowledge ;)

I hope Ric has a fantastic Summer in PR. I know he is looking forward to it. I hope I survive it!

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. 

Reality

I don't think there is a better pic to describe how, we as parents, feel dealing with this shit we call Evans.

Ric's numbers are good. We have 3.1 wbc, 1800 neutrophils, 14.8 hemoglobin and a whopping 138,000 platelets! Whoohooo!!! Our Dr is happy with the numbers! Until I ask "how long till the chemo effects get out of his body and we start all over again?" 

Even though, I keep a positive outlook I still kind of live waiting for the other shoe to drop and waiting for shit to hit the fan again. Which, I know is not healthy. However, I don't think any parent of any sick child ever stops feeling this way.

Here's the latest scoop on Ric. The chemo treatment he finished in June killed all his B cells. The B cells are in charge of creating antibodies in your body. Antibodies help us fight the common cold, pneumonia etc. In Ric's body, B cells are also responsible for the evil antibody creation, which kills his good cells. Well, chemo killed all those B cells. Now, the B cells are growing back, which means we need to watch for the evil ones. Back in Nov he had 10% of B cell production. We are checking his B cell numbers again in the next 8 weeks.  His prednisone got dropped to 1mg/day, so he is basically unprotected if his body decides to create evil antibodies again.

I take comfort in knowing that, if shit hits the fan, this time around it won't catch us by surprise. This time around we all know what to look for. My mom said to me the other day "woman, those antibodies don't want to mess with you!". All I'm thinking is, I know I will get the energy to deal with it, if they decide to show up, but I really don't want to deal with it. I don't want Ric to deal with that again. I don't want my family to deal with that again. However, that is our new reality. HIS new reality. OUR new reality!

No matter how many dips on the road, forward movement is necessary to get to our goal....remission!  

To the evil antibodies I say this: Stay away cause you won't know what hit you if you mess with my boy, again!

Awkward moments

Every once in a while Ric asks if he ever has to do chemo again. Today, he asked again. My reply is usually the same "if we have to, we have to. It helped last time, right?" To which he always replies "right". 

It is still a little unreal to me that we have these conversations. It breaks my heart a bit every time he asks. But, I am sure it breaks his more. Keeping a brave face is not easy. I often wonder, if it will ever get easier.

Thank God for distractions and little daily victories, which are no longer little, but huge.