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.

Something's coming

I  haven't been here in a while. I apologize. When I realized Ric was reading my blog, I panicked. I really didn't know if I wanted him to know my every thought. He said he really enjoyed reading my blog and the positive outlook. But still....I panicked! So, this will be a lengthy one....grab a snack!

Anyways, here I am again. First things first! After Rituximab (chemo) treatments, Ric has been pretty stable. Numbers have fluctuated a bit, but they are in the safe zone. His white blood cells are the most stubborn of them all, but I think we have found a "new normal" around 2.6 wbc. He survived strep as any other of my kids would. He is still on prednisone, but a very mild 1.5mg/day. His cheeks are not swollen anymore!! He looks like pre Evans Ric! He also made the Freshmen Basketball team at his school and has been very physically active since around July. Which, of course, makes me (and our doctors) wonder if physical activity has anything to do with his numbers being stable or if we are just seeing the results of Rituximab. Whatever it is, it seems to be working and I am very happy about that. His last check up was Nov 25 and we go in again on 1/20. This has been the longest period of time without a CBC and I wasn't comfortable with this at first. However, he looks fine, there are no symptoms and I have learned to be a little patient.

As this year comes to a close I can't help but to look back. This year has kicked my ass. It has been very difficult at times to choose to stay calm and move forward with Evans and cancer (my mom) in my face the whole freaking year. 2013 turned our lives upside down. But, as I've stated before, I think it really has made our family stronger.

There were many great moments in 2013 too. I want to be fair to 2013. These are a few of those moments:
1) Goofy weekend
2) a week in the mountains of Blue Ridge, GA with my family in a wonderful cabin
3) two trips to PR (even though, these exhausted me emotionally)
4) Ric's first Summer with us. He usually spends it in PR with his dad.
5) Lots of beach days with my boys
6) great first semester in school for all the boys
7) both Josh and I have great jobs and very supportive bosses
8) New York City Marathon weekend and all running related endeavors
9) less bullshit
10) stronger marriage
11) stronger friendships
12) new perspectives
13) stronger children

I was watching Six by Sondheim yesterday. I love Sondheim! The first song they talked about was Something's Coming, from West Side Story. I have always loved this song. I think people get all caught up in the big numbers of this musical and this song doesn't get the attention it deserves. As the lyrics are flowing in my mind again, I can't help but to think that is going to be my attitude towards 2014.

Could it be? Yes, it could.
Something's coming, something good,
If I can wait!
Something's coming, I don't know what it is,
But it is
Gonna be great!


.....Around the corner,
Or whistling down the river,
Come on, deliver
To me!
Will it be? Yes, it will.
Maybe just by holding still,
It'll be there!

Come on, something, come on in, don't be shy,
Meet a guy,
Pull up a chair!
The air is humming,
And something great is coming!

I have no clue what 2014 will bring, regarding health. All I know is that, regardless of what it brings, 2014 will not kick my ass. 2014 better watch out! I am a stronger person and I will lead the way to take it by storm! Something great IS coming!