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!
Monday, December 30, 2013
Monday, July 29, 2013
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.
Monday, July 15, 2013
Vows
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!
Tuesday, July 9, 2013
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!
Tuesday, July 2, 2013
The waiting game
Is it July 8th already?? OMG! This whole waiting three weeks for testing has played with my anxiety, big time! Last week I told Josh, I'm calling the pediatrician so she can do a cbc and I can actually sleep better at night knowing he's fine. Of course, he didn't let me! He reminded me how we need to listen and trust our doctors. Well, that is definitely easier said than done!!
Ric has been doing fine! No bruising, no symptoms whatsoever! He has been volunteering at the kid's Summer Camp twice a week and that has kept him entertained. So far, so good. He has been hanging out with his friends, going to sleepovers and enjoying life as a 14 yr old....oh and getting grounded too for going on a sleepover and forgetting to take his meds! I guess this is what is all about, right? Trying to stay as "normal" as possible.
On July 8th we go for blood tests. We will find out if the chemo rounds worked or if he needs more rounds or if we need to change medicines. July 8th needs to get here fast!
I promised myself I will stay as calmed as possible until July 8th! Let's see how I do!
Thursday, June 20, 2013
Hidden potential
Ha! I came across this ecard the other day. Difficulties in life! We all have difficulties in life. We all battle our own wars.
My war doesn't make anyone elses war less important. However, sometimes I can't help but feel like I want to smack someone on the face with a chair when they bitch about their wars. I have always been what I call "bullshit intolerant" and Evans has just strengthen that side of me. I'm not proud of it, it's jut a fact. I mean, don't get me wrong, I still want to be a friend to my good friends and hear them out and put them in perspective when they need some. It's just now I have another perspective.
I have always said that, in the world according to Liliana, there is no bigger problem than a health problem. Well, now I know that to be true. Not only do we worry about our son's health constantly, but we also worry financially. Is health insurance going to cover all this? Are we gonna have to sell the house? I mean, that's a real stress that no one seems to talk about. Maybe because it's politically incorrect? These are real concerns, real problems, real worries in my world. This explains why my "bullshit intolerant" side has been intensified.
Difficulties in life don't come to destroy you, but to help you realize your hidden potential. I just LOVED that when I read it!!! Yeah, we are battling a tough war, but this won't destroy us! Hidden potential!!! Ric has grown in 3 months what a normal teenager probably grows throughout his teenage years. I am amaze at how well he is handling all this, especially emotionally. He still has his classic 14yr old moments, which have suddenly taken on a whole new meaning for me. It makes me happy to see that there is still an argumentative teenager in the house!
He just finished his last chemo this past Monday. Now, we get a break until July 8. On that day, they will run blood tests and see where he's at and if the chemo worked, etc. Until then, he gets a break from needles. No blood tests, no nothing until July 8. He's happy about that! Me, on the other hand, a little stressed. No blood tests in three weeks?? But, blood tests give me comfort!! How will I know if his platelets or neutrophils drop? It's not like he presents obvious Evans symptoms anyway! Uughhhh! Oh well, I have to make peace with that and try to survive these next 3 weeks without a CBC.
Hidden potentials....who knew I was going to rely on my marathon experience to be able to deal with all this. I guess that's my hidden potential. Focus, determination, discipline all things I have strengthen during marathon training and are now helping me cope. Josh's hidden potential....to deal with me, well I've never been easy so that is not really a hidden potential of his, it's just now I am super aware of it! He has just become a bigger rock for me, if that was at all possible. The kids' hidden potential....they are all amazing boys and the fact that one of them is sick doesn't keep them from being boys, which is their job. I am very proud of how much stronger we all are. That's our hidden potential.
Difficulties will come and go. Today, it's Evans, tomorrow who knows what they will be. Now we know they come to make us stronger, no matter how many times I doubt my sanity.
Monday, June 10, 2013
Running uphill
In this Evans' world one literally has to live one day at a time. For the last 7 days Ric has been feeling FANTASTIC!!!!!! We have had a whole week of no emergencies, no bruising, no bleeding no nothing! Yes! I had been hoping for some calm. However, as I rejoice in the calm I can't help to think if this is the calm before the storm.
Everything did feel like an uphill struggle when we started this course of treatment. Some people compare this to a roller coaster ride. I compare it to hill repeats. During hill repeats we constantly go up the hill at an uncomfortable speed and then come down slowly, to recover. We do this for a ridiculous number of times, because let's face it to "normal" humans running up and down a hill more than once it's just stupid. When we are going up we struggle mentally and physically, just like we struggle when Evans decide to rear its ugly head and say hi. But when we get to the top, it is an achievement and we look around us and realize that "yeah, we just kicked that hill's ass!"
Today, we are at his 3rd chemo with Rituximab. As usual, they drew blood for a cbc panel. I always look forward to CBC results because this is the only way of knowing if Ric is responding to this medicine. I anxiously wait for CBC results, almost as much as race mornings. I know it sounds ridiculous, but in a world of unknowns, CBC results give me some type of comfort. His platelets today are at 149,000 (normal 150,000 and up), his white blood cells are 3900 (normal 4000 and up), his neutrophils are at 1883, right at normal!!! Did you hear that??? Normal????
Today's results gave me a little bit of hope. However, I am very cautious with this hope thing. I know we only have one round left , so we might just have to start running uphill again. But, in a world that is one day at a time I will rejoice in today's little victory! Today, it looks like he's responding to treatment. Today, we have good numbers. These past few days, we have enjoyed the view from the top of our hill. It looks great and promising. But, I know Evans and I know we need to start coming down the hill, recover and catch our breaths for when we have to run uphill again. Hill repeats suck, but they make us stronger and that's what I need to keep focusing on. This whole thing sucks, and even though I can't understand "why Ric?" most days, it is making me, Ric and my whole family stronger. This past week, we kicked the hill's ass!
Everything did feel like an uphill struggle when we started this course of treatment. Some people compare this to a roller coaster ride. I compare it to hill repeats. During hill repeats we constantly go up the hill at an uncomfortable speed and then come down slowly, to recover. We do this for a ridiculous number of times, because let's face it to "normal" humans running up and down a hill more than once it's just stupid. When we are going up we struggle mentally and physically, just like we struggle when Evans decide to rear its ugly head and say hi. But when we get to the top, it is an achievement and we look around us and realize that "yeah, we just kicked that hill's ass!"
Today, we are at his 3rd chemo with Rituximab. As usual, they drew blood for a cbc panel. I always look forward to CBC results because this is the only way of knowing if Ric is responding to this medicine. I anxiously wait for CBC results, almost as much as race mornings. I know it sounds ridiculous, but in a world of unknowns, CBC results give me some type of comfort. His platelets today are at 149,000 (normal 150,000 and up), his white blood cells are 3900 (normal 4000 and up), his neutrophils are at 1883, right at normal!!! Did you hear that??? Normal????
Today's results gave me a little bit of hope. However, I am very cautious with this hope thing. I know we only have one round left , so we might just have to start running uphill again. But, in a world that is one day at a time I will rejoice in today's little victory! Today, it looks like he's responding to treatment. Today, we have good numbers. These past few days, we have enjoyed the view from the top of our hill. It looks great and promising. But, I know Evans and I know we need to start coming down the hill, recover and catch our breaths for when we have to run uphill again. Hill repeats suck, but they make us stronger and that's what I need to keep focusing on. This whole thing sucks, and even though I can't understand "why Ric?" most days, it is making me, Ric and my whole family stronger. This past week, we kicked the hill's ass!
Thursday, June 6, 2013
Baby steps
In life, I tend to be much more black and white. Well, at least until 3 months ago where I started dealing with every shade of gray there is. It is amazing how running has helped me deal with Evans. I find that if I apply the same principles I apply to running, I can handle it. There really is not much planning you can do around Evans, but we stay faithful through Ric's treatments, we are dedicated, focused and believe that one day we will get to remission. Hopefully, that day is not too far away, but a small step forward is a step in the right direction.
It is difficult to stay in that mindset when Evans constantly reminds us that we will have to walk backwards as well. To Evans I say this...."this girl doesn't know how to move backwards, I go forward and I am trying my hardest to move my whole crew forward, so you can take your backwards and shove it up your evil antibodies' ass!"
Ric had his chemo this past Monday....so far, so good and no hives or any other reactions. This week we are at a whopping 130,000 platelets! His white blood cells are still behaving like cranky, whining teenagers, but what are we gonna do? His neutrophils are the crankiest of them all, at 395, which means he basically has no "soldiers" to fight any infection. He feels perfectly fine, though! Yesterday, his pediatrician called to see how he was doing and I told her "I am waiting for the other shoe to drop" and she said "Well, you should be enjoying these peaceful days, that way when the rollercoaster comes down again you can look back and say...hey, I had a few good days and hold on to that strength." That woman is amazing! She's totally right! We have enjoyed almost "normal" days this week. Ric graduated from the 8th grade, his brother William graduated from 5th grade. It's been a week of celebration! I am quietly celebrating that Ric has been feeling good and has had no reaction, so far.
PS....I have added a new state of alert when it comes to Evans.....RED WEDDING! Hopefully, we will never have to use it.
Friday, May 31, 2013
Little victories in valleys of hell
"Your body can stand almost anything. It's your mind that you have to convince" - Unknown
That has definitely been on my mind this whole week. It is not until we are faced with the unimaginable that we learn that we are strong enough to deal with it.
I was talking to a very good old friend of mine today. Both our families are walking through "little valleys of hell" as a fellow Evans' parent so eloquently put it the other day. We were talking about all our fears with our kids. I mean, how can we protect them? We can't be there with them every single day at every single minute! I am sure this is a burden on every parent's mind, but when you are dealing with tough shit that takes on a whole new meaning.
He was telling me how his wife and him read my blogs and feed from my energy and my attempts to stay positive and strong for my family. I explained to him that they way I look at it is something like disciplining children. The tough thing to do is to give them discipline. The easy thing to do is let them do whatever the hell they want. For me, the tough thing to do is staying positive and strong. The easy thing to do would be to dig a big hole and bury myself, and everyone around me, in it. That is just not acceptable.
Monday, Ric couldn't do his Rituximab treatment cause he was covered in hives. They gave us Atarax to treat it, which is a bit stronger than Benadryl. That seemed to help. We were hives-free Monday afternoon, Tuesday and Wednesday!!! Wow! Two and a half days of some kind of peace.
Wednesday was the day the New York City Marathon drew their lottery and notified runners who was actually going to run. They do that because they get soooooooo many entries, you just can't register for it. It has to be a drawing, unless you can qualify which for me would be a 3:10hr marathon...yeah, not that good of a runner! This gave me something to fix my mind to the whole day. This day wasn't about Evans, it was about the NYC Marathon. I checked my email countless times. My friends checked theirs. We were texting, all anxious to find out if anyone made it into the lottery. Some experts say it is harder to get picked to run NYC Marathon than it is to get into Harvard. Ric was having a fantastic day too! Me and the kids sat down for dinner, my hubby was working, and when I'm done I tell the kids "ok, if mama makes it in the NYC marathon you can play video games during the weekdays for what's left of the school year". I mean, seriously, the odds of that happening!! LOLOL I was safe! We fininshed dinner and I tell the boys....I'm going to check one more time, ok? OK!!! they said. And there it was.......YOU ARE IN the NYC Marathon. HOLY SHIT! A VICTORY!!! A VICTORY IN THE MIDST OF THIS VALLEY OF HELL!!!!! Ha! It was an awesome moment to share with the kiddos. When I put William, who's 11, to bed that night he said "I will never forget this day, it was great to dance around in the kitchen because you made it into the NYC Marathon".
After two perfect hours of rejoicing and still not believing I got in, I start thinking to myself....well, that is if I can make it to NYC. I mean, seriously, if Ric is not somewhat stable that is just not happening. However, if I can't make it this year I do have guaranteed entry for next year.
It was amazing how my mind clicked from being a little down and frustrated to this is what I need! I need to train for a race! I need a goal, I CAN CONTROL!!!!! I can control my training, I can control my runs. This can keep me focused, energized, and strong. I don't have to be out there until 2pm! I can start running at 4am and still be back before my husband has to go to work. YES, I can do this! This is just what I needed. Getting to run NYC was the "happy pill" I needed.
Thursday, hives came back around 6:30pm. They weren't as bad as before, but they were there. However, Ric took his med, we put some caladryl and he slept very well. Today, we had to go back to the hospital cause there was bruising, but his numbers were fine. 97,000 platelets! Whohooo!!! Another little victory!!!!!
So, this is how I choose to measure this week. Out of 6 days, Sunday, Monday and Friday were stressful. Tuesday, Wednesday and Thursday were just fine. That's better than last week, where we had 6 stressful days. I have to convince my mind that we can handle almost anything. That's the tough thing to do, but it is doable. My dear good old friends, we can't lose focus as we walk through our little valleys of hell because at the other end of this valley there's an amazing beach where we will sit with a mojito in hand getting energized to walk the next valley.
I was talking to a very good old friend of mine today. Both our families are walking through "little valleys of hell" as a fellow Evans' parent so eloquently put it the other day. We were talking about all our fears with our kids. I mean, how can we protect them? We can't be there with them every single day at every single minute! I am sure this is a burden on every parent's mind, but when you are dealing with tough shit that takes on a whole new meaning.
He was telling me how his wife and him read my blogs and feed from my energy and my attempts to stay positive and strong for my family. I explained to him that they way I look at it is something like disciplining children. The tough thing to do is to give them discipline. The easy thing to do is let them do whatever the hell they want. For me, the tough thing to do is staying positive and strong. The easy thing to do would be to dig a big hole and bury myself, and everyone around me, in it. That is just not acceptable.
Monday, Ric couldn't do his Rituximab treatment cause he was covered in hives. They gave us Atarax to treat it, which is a bit stronger than Benadryl. That seemed to help. We were hives-free Monday afternoon, Tuesday and Wednesday!!! Wow! Two and a half days of some kind of peace.
Wednesday was the day the New York City Marathon drew their lottery and notified runners who was actually going to run. They do that because they get soooooooo many entries, you just can't register for it. It has to be a drawing, unless you can qualify which for me would be a 3:10hr marathon...yeah, not that good of a runner! This gave me something to fix my mind to the whole day. This day wasn't about Evans, it was about the NYC Marathon. I checked my email countless times. My friends checked theirs. We were texting, all anxious to find out if anyone made it into the lottery. Some experts say it is harder to get picked to run NYC Marathon than it is to get into Harvard. Ric was having a fantastic day too! Me and the kids sat down for dinner, my hubby was working, and when I'm done I tell the kids "ok, if mama makes it in the NYC marathon you can play video games during the weekdays for what's left of the school year". I mean, seriously, the odds of that happening!! LOLOL I was safe! We fininshed dinner and I tell the boys....I'm going to check one more time, ok? OK!!! they said. And there it was.......YOU ARE IN the NYC Marathon. HOLY SHIT! A VICTORY!!! A VICTORY IN THE MIDST OF THIS VALLEY OF HELL!!!!! Ha! It was an awesome moment to share with the kiddos. When I put William, who's 11, to bed that night he said "I will never forget this day, it was great to dance around in the kitchen because you made it into the NYC Marathon".
After two perfect hours of rejoicing and still not believing I got in, I start thinking to myself....well, that is if I can make it to NYC. I mean, seriously, if Ric is not somewhat stable that is just not happening. However, if I can't make it this year I do have guaranteed entry for next year.
It was amazing how my mind clicked from being a little down and frustrated to this is what I need! I need to train for a race! I need a goal, I CAN CONTROL!!!!! I can control my training, I can control my runs. This can keep me focused, energized, and strong. I don't have to be out there until 2pm! I can start running at 4am and still be back before my husband has to go to work. YES, I can do this! This is just what I needed. Getting to run NYC was the "happy pill" I needed.
Thursday, hives came back around 6:30pm. They weren't as bad as before, but they were there. However, Ric took his med, we put some caladryl and he slept very well. Today, we had to go back to the hospital cause there was bruising, but his numbers were fine. 97,000 platelets! Whohooo!!! Another little victory!!!!!
So, this is how I choose to measure this week. Out of 6 days, Sunday, Monday and Friday were stressful. Tuesday, Wednesday and Thursday were just fine. That's better than last week, where we had 6 stressful days. I have to convince my mind that we can handle almost anything. That's the tough thing to do, but it is doable. My dear good old friends, we can't lose focus as we walk through our little valleys of hell because at the other end of this valley there's an amazing beach where we will sit with a mojito in hand getting energized to walk the next valley.
Wednesday, May 29, 2013
Going, going, going...
Last January I ran the Goofy Challenge at Disney. What that entails is to run a half marathon (13.1 miles) Saturday and run a full marathon (26.2 miles) the next day for a total of 39.3 miles for the weekend. Yes, I know to normal people that sounds just stupid. To me, it sounded like fun!
When you run these crazy distances, you are bound to feel tired during the race. Things will pop up. One of my running buddies had blisters pop up during the marathon at mile 6 or 7...which sucked for him cause we still had a loooot of miles ahead of us. I felt fine until around mile 20. That's when I hit my wall and started feeling every bit of aching in my body. However, something magical happens when you run a marathon. It's almost like your mind knows it can't give up, so it keeps going and going and going. It is not until after you cross the finish line that you really start feeling the effects of the crazy shit you just did.
This past week has been just like the marathon. I'm going, going, going regardless of what little signs my body sends me to stop and rest. The last two days have been less stressful and now I feel exactly how I feel after I finish running 26.2 miles. I am exhausted!
Ric has been having serious hives for a week now. We ended up in the ER Sat night cause he felt his throat a bit tight. The dr's at the ER had no idea what Evans was....autoimmune! I tell them and they reacted. They were literally googling stuff and I'm giving out orders! We need a cbc with differentials stat! He is neutropenic! You can't give him benadryl cause I gave him his last dose at 7! I was schooling them, I was the expert. Unbelievable! But, this is to be expected and our job is to educate people around us, including doctors and nurses. This was the equivalent of mile 21! Stressed out, tired as hell since I had woken up at 4:45am to go race a 5k and my body was just begging to rest, but my mind just kept going, going, going.
We couldn't do chemo yesterday because of the hives, now we wait until Monday. We have been hives free for almost 21 hrs now! Whoohooo! A little breathing room for all of us!
It's been a marathon, but thank God I know how to deal with marathons! I just have to remind myself not to go crazy and not to overextend myself either. There are going to be massive walls along the way, but as long as we have tools to deal with these walls we will be fine.
Now, I am feeling the effects post marathon. I just hope my mind and body react to this new craziness as it does during a marathon. I want the magical thing happening where my mind keeps fueling my body, regardless of the circumstances. I know that once we get to remission it would've been all worth it. I have to remind myself this is training and this past week was a sucky week at training. That's all!
Saturday, May 25, 2013
States of alert
You know how the country is constantly on a state of alert?? Yellow, orange, red?
That's how I feel constantly. I am in a constant state of alert.
Ric had his first chemo this past Monday. All looked good. I was happy there was no reaction! Whoohoo! Then came Wednesday and the hives. Hmmm, hives? Wednesday, 2 days after? Let the calls begin! Dr says it is a normal reaction, but usually immediately, not two days later. Thursday doc says it may be because he is out of the prednisone. Let's go back to it and wean him out again, slower. So, back on steroids.
Friday the heartburn! To the point where he is completely uncomfortable. Zantac's turn! Friday night he complains about a pain on the left side of his chest. Hmmm...that I can track! Thank you Garmin!! I strapped my heart rate monitor on him and started measuring his heart beat. A little high, but nothing to be concerned about, as per the pediatrician who I'm texting like a crazy teenager!
Today, more hives! What the hell? Benadryl again with Prevacid this time cause apparently those two work well together, who knew! Hives are coming in quick, under his arms, behind his neck, behind his ears, on the side of the neck. What the hell is this? So, we start getting the hives under control...thank God! Ten minutes later.....a bruise. Text a pic to the pediatrician....ok mom, platelets are low. Let me see if we can get labs done tonight.
Here we go, Evans is rearing his ugly head. No labs can be done tonight, we'll have to wait. If he gets more bruises overnight, we have to go in the morning for labs. If he doesn't we can wait til Tuesday when we go in again for treatment.
Always on a state of alert!!! Today we are in orange. I just want to have one normal day in which our alert level can be on yellow and I can kind of breathe! Oh, and also not drive our pediatrician crazy with texts and pictures! We have the best pediatrician in the WORLD!!!!
Monday, May 20, 2013
Don't lose it!
He was a little anxious in the morning, but so was every living being under this roof. His friend Cristian came with us to keep him entertained. Best idea ever! They played video games for a while, chit chatted and, all in all, spent a good day together.
I was ecstatic Ric was responding 
so well to the new treatment. We'll see in a few weeks if his cells agree.
The worst part of the day was seeing all the other little children going through their treatments. Kids battling cancer with no hair, dark circles under their eyes, exhausted. Their moms strong, although dark circles under their eyes were noticeable too. But, you couldn't tell these moms were suffering for their kids. These moms are warriors! They are the captains of their kid's team! It gave me such strength to see strong women all around me while at the same time seeing sick kids all around me.
As Ric sat there taking his chemo, I just kept thinking "Do not lose it!" " You can NOT lose it" "This is what needs to be done so he gets better". It was hard. Today was ridiculously hard, but we survived. Ric responded and I didn't lose it. I'll take it! One down, three to go.
I don't know if these appointments are gonna get any easier. I really, really have no idea. I just hope that Ric keeps responding to treatment and getting closer to remission.
I allow myself 5 to 10 minutes of a little breakdown a week. Just had it. That's it! The rest of the week will go by flawlessly. I have a very strong boy and I am very proud of him!
Saturday, May 18, 2013
Endurance
There is a point during a marathon, for me around mile 22, when I doubt myself, I doubt my training, and most of all I doubt my sanity!!!
When we train, we are trained to push through tough days, push through negative thoughts, push through the heat or the cold. Just push through the proverbial "wall".
When I trained for my first marathon I discovered myself. I didn't realize I could be that disciplined and determined. I often compare running to life. They are both filled with victories and failures and moments that make us or break us. Now, as we face what is an ultra marathon called Evans, more than ever I can apply all that running represents into this.
Last October, Ric ran his first half marathon. He understands what it is to train when you don't want to, do hill repeats in 90 deg weather, go to bed early because you have a run early in the morning. Endurance running requires sacrifice, discipline, focus and desire. Dealing with Evans is no different. I constantly find myself in conversations with him where he tells me "This is like half marathon training, right mom? It sucked, but I did it!" Yeah, Ric didn't enjoy training too much, but, like he said, he did it.
That's where we stand today. He starts his new med Monday, Rituximab (chemo) and it sucks, but this is what this week of training looks like in the ultra marathon training program of Evans Syndrome. We will have moments of fear, moments of doubts and moments where my sanity will be tested. We just have to stay strong and remember there will be good days too. We will endure this and whatever else is to come. After all, this is just another challenge in the marathon of life.
When we train, we are trained to push through tough days, push through negative thoughts, push through the heat or the cold. Just push through the proverbial "wall".
When I trained for my first marathon I discovered myself. I didn't realize I could be that disciplined and determined. I often compare running to life. They are both filled with victories and failures and moments that make us or break us. Now, as we face what is an ultra marathon called Evans, more than ever I can apply all that running represents into this.
Last October, Ric ran his first half marathon. He understands what it is to train when you don't want to, do hill repeats in 90 deg weather, go to bed early because you have a run early in the morning. Endurance running requires sacrifice, discipline, focus and desire. Dealing with Evans is no different. I constantly find myself in conversations with him where he tells me "This is like half marathon training, right mom? It sucked, but I did it!" Yeah, Ric didn't enjoy training too much, but, like he said, he did it.
That's where we stand today. He starts his new med Monday, Rituximab (chemo) and it sucks, but this is what this week of training looks like in the ultra marathon training program of Evans Syndrome. We will have moments of fear, moments of doubts and moments where my sanity will be tested. We just have to stay strong and remember there will be good days too. We will endure this and whatever else is to come. After all, this is just another challenge in the marathon of life.
Wednesday, May 15, 2013
Ordinary Miracles
This has been the week of people telling me " I don't know how you're dealing with this". So, for all of you wondering here it goes.
We try to keep some normalcy at home. Kids go to school, kids argue, kids get on each other's nerves, kids play video games. Husband goes to work, comes home from work, has a beer, reads, plays on the internet and deals with mom when she's having a breakdown. Mom runs, works, coaches, goes to boot camp, cooks while the music is on, sings along to the music, talks to her friends and drinks some wine, as needed. So, stop asking how we are dealing with this. Cause this is the answer! I understand, to most people this is an unimaginable situation, however it is our situation and our "new normal" and we have to roll with the punches.
So, our routine now includes weekly visits to a hemotologist/oncologist. So what? We are certainly not the only family dealing with a sick child nor the one with the sickest child out there. We need to stay strong and focused and so does our village!
There's this song called Ordinary Miracles, the master Barbra Streisand sings it. I LOVE Barbra! Most days I think I can totally sing with her! Hahaha! My kitchen has great acoustics! Music is another one of my many therapies. It seems, that lately, songs are taking on a whole new meaning.
Ordinary miracles. Do you know that the new drug Ric has to take, starting next week, is a drug used to fight Lymphoma? So, all my efforts with Team in Training and The Leukemia and Lymphoma Society are working now for my family and all Evans families out there. Do you have any idea how AMAZING it feels that we played a part on that? Just because we decided one day to try and change the world and do an ordinary miracle. "Just as pebbles make a mountain, raindrops make a sea, one day a time, change begins with you and me". Seriously!! Is Barbra talking to me??? And not only to me, but to all the amazing people I know that have either participated or donated to TNT. To all of you, THANK YOU! Thank you for being "quiet heroes, living quiet days, walking through the world, changing it in quiet ways. Ordinary miracles, like candles in the dark, EACH and EVERYONE of us lights a spark!" Thank you for taking part in repairing the broken pieces of the world.
Our walls are tumbling, the mountains are moving, the winds and the tides are turning. However in joy and quiet wonder we will see miracles multiply. "Hope can spring eternally", we will plant it and it WILL grow cause all you need is love and we have plenty of that.
Ric starts Rituximab on Monday. This is intravenous, but we shouldn't see too many side effects. Still, we have to sit there for a few hours while the medicine goes in. The way I see it we have two choices. We can either be a ray of light to all those kids (and parents) that will be there taking their chemos as well OR we can go down the deep dark hole of depression. Hmmmmm.....which one to pick?? It's not the hole, I can tell you that! Ric is in good spirits and understands that this is part of the road to remission. From what I've read 60% of kids respond to this treatment. Fingers crossed!
Monday, May 13, 2013
It takes a village!
When Ric was hospitalized 4 weeks ago, one of my very good friends told me "Listen, you need to be like a palm tree. You have to sway with the weather. I know you are black and white, but you have to become a palm tree now." I am pretty sure, my friend has no idea how many times a day I think of being a damn palm tree. Just sway, don't get desperate or impatient. Sway, because palm trees survive hurricanes.
I have been very lucky with having people around me that care about my son and my family. My friends have been amazing. Even though, there have been times where I've said things like "I have 4 doctors giving me orders, you can not tell me what to do", they still stick by my side.
Sometimes the outpouring of love is very overwhelming. When Ric's numbers went down last week, they all went into problem solving mode (one of the many reasons I love these peeps). "Do you want me to cook for you? Do you need some wine? We really want to help! Let me know what I can do for you." It sucks that when his numbers go down, there is really nothing anyone can do. There's nothing Ric can do, there's nothing I can do and the doctors....well, they are almost as baffled as we are. I know it must suck for them that I say the same thing all the time "I'm fine, there's nothing to be done, thanks anyways" because I know how bad they just want to help us out.
When I run, I disconnect from Evans (just a bit). This past weekend our team had a race. Everyone had set goals for themselves and two of my teammates wanted to run a sub 1 hour 10k (6.2 miles). As their coach (and their friend), I had told them I would pace them for that. It was the most peaceful run I've had in a while. Speed gave me clarity, perspective. The only thought going through my mind was "I just need to get these two to the finish line, in less than an hour". Just that thought. No Evans, no neutrophils count, no white blood cell counts, no wondering what the next treatment is going to be....just 6.2 miles and my girl's goals in my mind. It was a hot morning, but we did it!! We ran 6.2 miles in less than an hour! The ladies were very proud of themselves. It made me feel great that I helped them achieve their goal. Even though my hands are tied when it comes to Evans, my hands are not tight when it comes to running. It feels good to be able to control something. I can always control my run.
I want to thank my village! They know who they are. I know sometimes it seems that I'm just being stubborn with not accepting help, but know that there is really nothing you can do at that moment. You know that I will ask for it, when I need it. I am so thankful to have you all in my life, my running friends, my wine drinking friends, my mommy friends, my old friends. I adore you all and you are helping this palm tree sway and survive the hurricane.
I have been very lucky with having people around me that care about my son and my family. My friends have been amazing. Even though, there have been times where I've said things like "I have 4 doctors giving me orders, you can not tell me what to do", they still stick by my side.
Sometimes the outpouring of love is very overwhelming. When Ric's numbers went down last week, they all went into problem solving mode (one of the many reasons I love these peeps). "Do you want me to cook for you? Do you need some wine? We really want to help! Let me know what I can do for you." It sucks that when his numbers go down, there is really nothing anyone can do. There's nothing Ric can do, there's nothing I can do and the doctors....well, they are almost as baffled as we are. I know it must suck for them that I say the same thing all the time "I'm fine, there's nothing to be done, thanks anyways" because I know how bad they just want to help us out.
When I run, I disconnect from Evans (just a bit). This past weekend our team had a race. Everyone had set goals for themselves and two of my teammates wanted to run a sub 1 hour 10k (6.2 miles). As their coach (and their friend), I had told them I would pace them for that. It was the most peaceful run I've had in a while. Speed gave me clarity, perspective. The only thought going through my mind was "I just need to get these two to the finish line, in less than an hour". Just that thought. No Evans, no neutrophils count, no white blood cell counts, no wondering what the next treatment is going to be....just 6.2 miles and my girl's goals in my mind. It was a hot morning, but we did it!! We ran 6.2 miles in less than an hour! The ladies were very proud of themselves. It made me feel great that I helped them achieve their goal. Even though my hands are tied when it comes to Evans, my hands are not tight when it comes to running. It feels good to be able to control something. I can always control my run.
I want to thank my village! They know who they are. I know sometimes it seems that I'm just being stubborn with not accepting help, but know that there is really nothing you can do at that moment. You know that I will ask for it, when I need it. I am so thankful to have you all in my life, my running friends, my wine drinking friends, my mommy friends, my old friends. I adore you all and you are helping this palm tree sway and survive the hurricane.
Thursday, May 9, 2013
Defying Gravity
There's this awesome play called Wicked. I love this play, love the story and most of all love the music. There's this song called Defying Gravity, which I have always felt very identified with. Now more than ever, I find myself singing it just to remind myself that "Unlimited....together we're unlimited!!! Together we'll be the greatest team there's ever been....there's no fight we can not win...you and I defying gravity!"
Now we are defying gravity! Dealing with an autoimmune disorder that is rare, sucks. It sucks ass! But, I have to keep reminding myself that no good will come from being sad, no good will come from falling down. So, I am trying to defy gravity!
I wish Ric's platelets will defy gravity too!!!! This week we are waaaaaaayyyyyyy too close to the danger zone (50,000 platelets). We are at 54,000. His white blood cells dropped drastically and his neutrophils (specific wbc in charge of fighting infections) dropped from a whopping 5960 to 740 in 7 days. Yeah, this kind of sucks. If neutrophils drop to 500 or less = hospital = iv antibiotics to help his body fight. His steroid dose has been increased to see if that will help his numbers go up a bit.
Ric's biggest concern.......a field trip he has to Islands of Adventures. He is 14 after all and I can't expect for him to understand why the doctors are concerned with him going to the field trip. I mean, he understands, but he doesn't want to hear it. They still haven't decided if he can go or not. It would totally break my heart if he can't go, but we all need to start working with understanding that these things will happen. Defying gravity again!
So, white blood cells, platelets and neutrophils: you will not bring us down! Our family will defy gravity and we will be the greatest team there's ever been! So, suck it!
Now we are defying gravity! Dealing with an autoimmune disorder that is rare, sucks. It sucks ass! But, I have to keep reminding myself that no good will come from being sad, no good will come from falling down. So, I am trying to defy gravity!
I wish Ric's platelets will defy gravity too!!!! This week we are waaaaaaayyyyyyy too close to the danger zone (50,000 platelets). We are at 54,000. His white blood cells dropped drastically and his neutrophils (specific wbc in charge of fighting infections) dropped from a whopping 5960 to 740 in 7 days. Yeah, this kind of sucks. If neutrophils drop to 500 or less = hospital = iv antibiotics to help his body fight. His steroid dose has been increased to see if that will help his numbers go up a bit.
Ric's biggest concern.......a field trip he has to Islands of Adventures. He is 14 after all and I can't expect for him to understand why the doctors are concerned with him going to the field trip. I mean, he understands, but he doesn't want to hear it. They still haven't decided if he can go or not. It would totally break my heart if he can't go, but we all need to start working with understanding that these things will happen. Defying gravity again!
So, white blood cells, platelets and neutrophils: you will not bring us down! Our family will defy gravity and we will be the greatest team there's ever been! So, suck it!
Tuesday, May 7, 2013
One day at a time
Yesterday was such a cool day! Ric has been banned from contact sports, for the time being. I have been trying to convince him to go to swim practice with me and my tri team, but he has been resistant. That is, until yesterday!
"Mom, I wanna go swim with you. But, I don't want to wear my regular bathing suit when you all look like pros." "Pros? Dude! We r not pros, we are enthusiasts!" "Well, you look like pros to me". I grabbed one of my tri shorts and gave it to him so he would look the part as well....you know like a pro!
Off to swim we went! We get to our local YMCA, he picks a lane, coach gives him instructions and off he goes. Off I went to!
Swimming is one of the most relaxing, mind clearing exercises in my life. All I focus on is how many yards I've done or have left! Just numbers going through my mind. Not numbers of white blood cells or red blood cells or platelets...just my distance. Nothing else in my mind, and that's not easy given I can't just be quiet or idle at any given moment. Very relaxing! Yes, I do understand that my idea of relaxing differs from that of normal people. 2600yds in the pool is all the relaxing I need....well, besides running!
I was done with my workout and Ric is still going up and down the lane. Coach tells me "he wants to swim 200 without stopping". Cool! Awesome! A goal! Whoohoo! He crushes that goal!!!
He gets off the pool and the endorphins begin to talk! Holy mother of God! Is this what I sound like after I do my long runs?? The boy would not shut up about how awesome and strong he felt in the pool! Awesome and strong!!! Two words he hasn't used to describe himself in the last 4 weeks! It's amazing what a little exercise can do for you! It definitely makes you happy! Thank you endorphins!!!!
Now, he wants to swim! Yes!! Swim!! No impact, he can totally do it, regardless of his number of platelets! Take that platelets!
I hope he finds a healthy outlet in swimming! At least he did yesterday! I'll take it! One day at a time!!
"Mom, I wanna go swim with you. But, I don't want to wear my regular bathing suit when you all look like pros." "Pros? Dude! We r not pros, we are enthusiasts!" "Well, you look like pros to me". I grabbed one of my tri shorts and gave it to him so he would look the part as well....you know like a pro!
Off to swim we went! We get to our local YMCA, he picks a lane, coach gives him instructions and off he goes. Off I went to!
Swimming is one of the most relaxing, mind clearing exercises in my life. All I focus on is how many yards I've done or have left! Just numbers going through my mind. Not numbers of white blood cells or red blood cells or platelets...just my distance. Nothing else in my mind, and that's not easy given I can't just be quiet or idle at any given moment. Very relaxing! Yes, I do understand that my idea of relaxing differs from that of normal people. 2600yds in the pool is all the relaxing I need....well, besides running!
I was done with my workout and Ric is still going up and down the lane. Coach tells me "he wants to swim 200 without stopping". Cool! Awesome! A goal! Whoohoo! He crushes that goal!!!
He gets off the pool and the endorphins begin to talk! Holy mother of God! Is this what I sound like after I do my long runs?? The boy would not shut up about how awesome and strong he felt in the pool! Awesome and strong!!! Two words he hasn't used to describe himself in the last 4 weeks! It's amazing what a little exercise can do for you! It definitely makes you happy! Thank you endorphins!!!!
Now, he wants to swim! Yes!! Swim!! No impact, he can totally do it, regardless of his number of platelets! Take that platelets!
I hope he finds a healthy outlet in swimming! At least he did yesterday! I'll take it! One day at a time!!
Monday, May 6, 2013
#mommyrunstokeephersanity!!!!
Lots of things going through my mind.
First, I had to establish a new rule...If your platelets are below 100,000 you have to stay here, where I can see you at all times! I mean, seriously! How the hell did I become that mom that cares about platelets levels? I guess that's what dealing with an autoimmune disorder will do to you.
His platelets last week went down from 103,000 to 70,000. The "danger zone", designated by our doctors, is 50,000. So, yeah, in my mind 70,000 is close enough to keep him under watch. He's still allowed to play basketball (his passion) and all that, but here where I can see him and keep him "safe" in case he starts bleeding or bruising.
I had big plans this year for me and my sports, which of course have taken a backseat to all this. I was planning on racing Ironman 70.3 in Augusta in September. However, since all the doctors are telling us it will take between 6 to 8 months (training time) to figure out which medicine he will respond to, Ironman 70.3 has been postponed to, hopefully, 2014. I know this sounds extra selfish, but I'm super bummed I can't do that this year as I know it would've kept me focused, clear minded and entertained throughout this Evans ordeal. The thought of paying for that registration to end up not being able to do it because of a possible emergency with Ric keeps me from doing it. Oh well!
Coaching keeps me focused and clear minded as well. Of course, running does too! All the doctors have said NOT TO STOP RUNNING....so to all my friends who keep bugging the hell out of me...SHUSH IT! NOT HAPPENING!
Yesterday was a great day! My athletes were competing in a triathlon, all distances, sprint, oly and 70.3 and they all did great! It was awesome to see their hard work pay off. It just keeps reminding me that dealing with Evans will definitely be like dealing with training. Some days, it will suck. Some days it will be completely fine. Some day we will get into remission = temporary finish line.
We have more blood tests this week. We'll see where we are! For now, TODAY it is just Evans and NOT cancer. For now, TODAY he will live a normal day, go to school, bug his brothers, annoy me with his 14 yr old antics. For now, TODAY, I will swim and clear my mind where there is nothing in it, except my distance. For now, TODAY, everything is fine and I am happy with that!
First, I had to establish a new rule...If your platelets are below 100,000 you have to stay here, where I can see you at all times! I mean, seriously! How the hell did I become that mom that cares about platelets levels? I guess that's what dealing with an autoimmune disorder will do to you.
His platelets last week went down from 103,000 to 70,000. The "danger zone", designated by our doctors, is 50,000. So, yeah, in my mind 70,000 is close enough to keep him under watch. He's still allowed to play basketball (his passion) and all that, but here where I can see him and keep him "safe" in case he starts bleeding or bruising.
I had big plans this year for me and my sports, which of course have taken a backseat to all this. I was planning on racing Ironman 70.3 in Augusta in September. However, since all the doctors are telling us it will take between 6 to 8 months (training time) to figure out which medicine he will respond to, Ironman 70.3 has been postponed to, hopefully, 2014. I know this sounds extra selfish, but I'm super bummed I can't do that this year as I know it would've kept me focused, clear minded and entertained throughout this Evans ordeal. The thought of paying for that registration to end up not being able to do it because of a possible emergency with Ric keeps me from doing it. Oh well!
Coaching keeps me focused and clear minded as well. Of course, running does too! All the doctors have said NOT TO STOP RUNNING....so to all my friends who keep bugging the hell out of me...SHUSH IT! NOT HAPPENING!
Yesterday was a great day! My athletes were competing in a triathlon, all distances, sprint, oly and 70.3 and they all did great! It was awesome to see their hard work pay off. It just keeps reminding me that dealing with Evans will definitely be like dealing with training. Some days, it will suck. Some days it will be completely fine. Some day we will get into remission = temporary finish line.
We have more blood tests this week. We'll see where we are! For now, TODAY it is just Evans and NOT cancer. For now, TODAY he will live a normal day, go to school, bug his brothers, annoy me with his 14 yr old antics. For now, TODAY, I will swim and clear my mind where there is nothing in it, except my distance. For now, TODAY, everything is fine and I am happy with that!
Thursday, May 2, 2013
Week 3
Who would've guessed that someone who has a degree in Comparative Literature would know so much about cells now?
I guess that's one of many superpowers moms have. We can adapt to crazy circumstances around us and become experts at it! It's like when your kid coughs a certain way you know exactly what he has and you basically end up telling the pediatrician the diagnosis and what to prescribe!
Waiting for CBC results is now exciting! Well CBC results with differentials! Yes, I want to know the exact number of cells in my boy's body, cause I'm OCD like that. Suddenly words like neutrophils, MCV, platelet count, RBC, WBC etc have become part of my daily lingo.
It does gives me some comfort to research and know all there is to know about this Evans character.
This week his red blood cells (rbc) and white blood cells (wbc) and neutrophils were great! Platelets, not so much. 70,000 from 103,000 last week. Not bad, but we don't want to get too close to 50,000 aka the danger zone. Apparently, that antibody is still having way too much fun with my son's platelets. However, he better watch it, cause this mom is on top of it!
I guess that's one of many superpowers moms have. We can adapt to crazy circumstances around us and become experts at it! It's like when your kid coughs a certain way you know exactly what he has and you basically end up telling the pediatrician the diagnosis and what to prescribe!
Waiting for CBC results is now exciting! Well CBC results with differentials! Yes, I want to know the exact number of cells in my boy's body, cause I'm OCD like that. Suddenly words like neutrophils, MCV, platelet count, RBC, WBC etc have become part of my daily lingo.
It does gives me some comfort to research and know all there is to know about this Evans character.
This week his red blood cells (rbc) and white blood cells (wbc) and neutrophils were great! Platelets, not so much. 70,000 from 103,000 last week. Not bad, but we don't want to get too close to 50,000 aka the danger zone. Apparently, that antibody is still having way too much fun with my son's platelets. However, he better watch it, cause this mom is on top of it!
Wednesday, May 1, 2013
Dealing with Evans
A few weeks ago, I noticed my 14 yr old son's lymph nodes enlarged. I know enough to know lymph nodes shouldn't be enlarged, especially if there's no cold or infection. Therefore, I took him to see his pediatrician. He also had little red spots in his hands and on his chest...later to find out this is called petechia. Well, it was a Friday morning when his pediatrician told me she was going to test for everything. Everything meaning leukemia.
I don't have the words to explain how that felt like, so I won't even try. After a few days in the hospital, a bone marrow biopsy and aspiration and endless blood tests, the doctors told us it wasn't leukemia. The sigh of relief in that room was very noticeable. Little did we know at that time, that the fact that we weren't dealing with cancer didn't mean we weren't dealing with something serious.
Thus came Evans Syndrome into our lives. The doctors told us there is very little information about this, therefore treatment is kind of a hit and miss situation. Lovely! I'm a marathon runner. I like planning, I like schedules and they were throwing me into a pool of gray! Evans Syndrome is a very rare autoimmune disease where his body creates antibodies that are killing his white blood cells, red blood cells and platelets.
How do you deal with stuff like this? Well, I have no idea. We, literally, have to take it one day at a time. For now, I keep on running. I am also trying to bring awareness to the cause, as the medical community doesn't think they need to research for a cure because there are not enough patients who suffer from this. This is a 1 in a million odds that you will get this. My son is case #75!!!
Today, we drew more blood. Now we have to test him on a weekly basis to make sure he's responding to treatment. Waiting for results is like waiting for marathon morning. You are anxious and looking forward to great results because you have done all the work!
I have decided I will approach this as I do marathon training. One day at a time, trusting that if we follow our "training" plan, my son will be fine!
I don't have the words to explain how that felt like, so I won't even try. After a few days in the hospital, a bone marrow biopsy and aspiration and endless blood tests, the doctors told us it wasn't leukemia. The sigh of relief in that room was very noticeable. Little did we know at that time, that the fact that we weren't dealing with cancer didn't mean we weren't dealing with something serious.
Thus came Evans Syndrome into our lives. The doctors told us there is very little information about this, therefore treatment is kind of a hit and miss situation. Lovely! I'm a marathon runner. I like planning, I like schedules and they were throwing me into a pool of gray! Evans Syndrome is a very rare autoimmune disease where his body creates antibodies that are killing his white blood cells, red blood cells and platelets.
How do you deal with stuff like this? Well, I have no idea. We, literally, have to take it one day at a time. For now, I keep on running. I am also trying to bring awareness to the cause, as the medical community doesn't think they need to research for a cure because there are not enough patients who suffer from this. This is a 1 in a million odds that you will get this. My son is case #75!!!
Today, we drew more blood. Now we have to test him on a weekly basis to make sure he's responding to treatment. Waiting for results is like waiting for marathon morning. You are anxious and looking forward to great results because you have done all the work!
I have decided I will approach this as I do marathon training. One day at a time, trusting that if we follow our "training" plan, my son will be fine!
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