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 ;)