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!

Things around

All is good in Evans' world! We have been out of treatment for 4 weeks now and everything looks good. Two weeks after Rituximab, Ric had 93,000 platelets and 3.8 white blood cells. 4 weeks after we are at 141,000 platelets and a whopping 6.1 white blood cells!! He's only on 10mg of prednisone per day. 

As always, I am cautiously optimistic. It seems that we are heading in the right direction, even though I know that Evans can creep up on us at any moment. However, at this moment, I choose to believe we are heading in the right direction.

There are so many things going on around me. My mom was recently diagnosed with pancreatic cancer. They caught it super early! The specialist says that she will be in the 5% of people that survive it. My uncle, who's had cancer for a few years now and is really more like a dad than an uncle,  seems to be having a rougher time as time goes by. I am just so thankful that Evans has given me a little break so I can have time to deal with everything else around me.

I have had to learn that things are not happening TO me, but AROUND me. That I have a choice on how to deal with all of it without losing my mind. That the same day I receive great numbers from Ric, I hear my mom has to go through 12 rounds of chemo and 1 of radio to prevent the tumor from growing back again. I choose to tell my mom, "look at Ric! 4 chemos and apparently they are working"! I have chosen to be a positive force, once again. Even when I know, this is the hardest path to follow.

I just hope Ric is closer to remission, mom is closer to a cure and my uncle is closer to having some peace. 

Vows

My husband and I got married 13 years ago today.  Back then, Ric was a healthy, talkative 1 year old. When we took our marriage vows, we never thought  that the "in sickness and in health" part would ever pertain to one of our children.  For whatever reason, we always think of those vows as between husband and wife. We don't think that those are the same vows we basically take when we have children.

I have heard many horror stories of husbands who leave their families when a child gets diagnosed with a  serious illness. I always think to myself those have to be the biggest assholes on Earth! This was a huge concern for me when Ric got sick. During the first days of Evans I often thought, holy crap is this going to put so much stress in our lives that it will end up breaking our marriage? It is a reality in so many other households, why would we be spared?

So far, so good. Josh has been my rock. He has been there for me for better and the worst! He gives me space when I need to vent, cry, yell, about how unfair it is for Ric to have such a thing. He understands that I am in a constant state of alert and stress. He doesn't throw it in my face, he just deals with me and comforts me when dark thoughts come to mind. He puts me in perspective real quick and reminds me every day that we are moving forward in the right direction.

I solemnly swore years ago to have and to hold you, for better or worse, for richer for poorer, in sickness and in health, to love, honor and cherish you til death us do part! Now, that applies to both Josh and the kids! It is amazing how perspective changes as life changes. The one constant always being love and forward movement!

Stronger

My good friend A sent me this ecard the other day with the following text following: "you must be like steel now lol!!" To which I answered..."some days I feel I am, other days I question it."  I don't know if we become stronger or if we just become used to the status quo. They say it takes 30 days for a human being to build a habit, I guess the same goes for getting used to a different life.


It's been three weeks since our last CBC. I was desperate to know where Ric's numbers were. DESPERATE!!!!!!! I was literally like Glinda in this pic! LOL I was losing patience and wanted to fast forward to July 8th. I had no time for people's bullshit, no time for anything except Ric's numbers!

July 8th was finally here!!!!!  Our appt was late in the day, therefore we had to wait...ONE DAY MORE for results. WTH?!?!? UNACCEPTABLE!!!! Do these people not know my anxiety???? In my head, when Dr.Eslin and Nurse Jen told me we had to wait one day more it completely sounded like the song from Les Miz. "Tomorrow we'll discover what our God in heaven has in store....one more dawn, one more day, ONE DAY MORE!!!"

July 9th...results are in. Ric's platelets are at 95,000. After three weeks of just being in 15g/day/prednisone platelets were holding still at 95,000, which for Ric is great! Our doctor decided to start weaning Ric off of his steroids a bit more, so now we are down to 10mg/day and NO CHEMO for the time being!! NO CHEMO!!! WHOHOOO!! Yay for little victories!!!! We will go for labs in two weeks, see where his numbers are and decide what the next step will be. Of course, I hope we can just keep weaning him off and soon enough be in no medicine in the enchanted land of remission, which, in my head of course,  looks like OZ....all shiny and awesome! "Some day I'll wish upon a star and wake up where the clouds are far behind me....where troubles melt like lemon drops, away above the chimney tops, that's where you'll find me!"

In this day by day world we live in,  we will enjoy the next two weeks of no needles and no CBC's (Liliana you better behave and not drop a house on any bitch!). I have to remember, even when I doubt it,  that I have become stronger. We, as a family, have become stronger and that is something to be grateful  for. My dear friend A, thanks for the reminder! xoxo