Surviving 365 days.

It has been exactly 365 days since my little boy went into surgery to remove a tumor. This tumor ended up being Neuroblastoma Cancer. 

On November 18th, 2012, as we drove back from a super relaxing weekend in Shawnee, PA, I notice something was wrong with my then 10month old baby. When we got home, as I held him I felt the bloody explosion that would be his poop. I immediately took him to his pediatrician, which thankfully work on Sundays. They tested for blood and his stool and the test was positive. We are sent to the ER with a possible case of intussusception. 

As soon as we got to the ER, they began to perform all standard tests for a infant.

On November 19th, while we were admitted (because of his age, test, and a fever, we knew we would be in the hospital, minimum 3 days since that’s how long cultures usually take), a group of serious looking doctors come in to talk to us. They introduced themselves as the Oncology Team of the hospital. They explained that they needed to talk to us in private. We got into the room with the group of 4 doctors, a social worker and a nurse. The doctor in charge, begins by saying: “Your sons’ MRI shows a mass and we are not sure what it is, but we highly believe is a tumor called neuroblastoma”. He began to explain, but I CAN’T REMEMBER ANYTHING… My mind drew a blank. All I remember from the rest of the conversation was my fighting the urge to cry. I didn’t want to cry in front of them. They said that the quicker we address the problem the better it would be. So they informed me that they had scheduled a surgery for Wednesday the 21st.

As I walked back to the room I kept holding my tears, and as soon as I saw my boy I collapsed and just let it all out. I CRIED. I held my child. I prayed. I can’t remember why my mom was with me, but I was happy she was. It gave me a sort of comfort.

On November 20th, the doctor in charge of the “case” advised us to switch over to the Oncology floor as we would be “better taken care of, and more informed”. And it was true. I had never had such a beautiful hospital stay as I did. They cared so much for my baby… it was also very humbling to speak to other parents who had even worse cases and how happy they and their children were. It made me stronger than I ever thought possible.

A year today, the 21, they whisked my baby away to the holding area of the operating room. There, I waited with my baby for the surgeon to brief me on what the procedure was. He came in with the anesthesiologist and another doctor. They explained to me that they needed to collapse his lung in order to be able to remove the tumor. They also explained how the tumor was so big that they couldn’t do a bioscopy surgery and they actually had to cut him open to remove it. They left and then came again and told me they revised the strategy and they would no longer have to collapse his lung. So after that the lovely nurse took my baby from my arms and of they went. I went to the waiting area where my mom, Gary, and Gavin were. I wanted Gavin with me to distract me. They had told me that the surgery would take about 5-8 hours depending on how the tumor was attached to the nerves. When the surgeon came out my heart sank to my stomach, but he smiled and said: “everything went perfect, we got more than 90% out which is great, he’s in the recovery room, you can come see him”.

I hadn’t cried the whole time he was in surgery. I knew he felt no pain. As soon as I saw him in the recovery room I collapsed. He had about 6 tubes coming out of his tiny body. He had 2 IVS (one on his foot and one on his neck), he had a central line (in case he would need blood), he had a breathing machine, and a chest tube, to remove excess water and blood from the surgery. He was pretty bloody and I could’t help it. I knew he was “ok” but I wasn’t. Then I saw his scar… His huge scar, the scar that would remind me everyday of his life this day. This kid is so amazing though. An hour later, while I was still crying next to him, he tried to get up, he had been trying to walk for weeks, and actually took his first steps about 2 weeks before all this happened. He looked at me and reached out. I couldn’t help it I needed to hold him and he needed me. I still couldn’t nurse him, but at least a hug was comfort enough. 

The next day, this kid woke up like nothing happened. He was his happy, strong self. He was getting up, eating, and at no point did they have to give him any type of pain medication. He did so good that he was sent home on Friday, 2 days post major surgery! 

We already knew that the tumor was malign, but as sure as the doctors were that it was neuroblastoma, we would have to wait until the following Monday. We went in for the appointment and it was confirmed. The surgery went great but because it was a neuroblastoma cancer, we would need to take some action. Thanks to God he didn’t require any chemotherapy or radiation. His treatment would consist of MRI every month for the first 3 months, then every 3 months and then every 6 and then every year. Every MRI For the first year requires him to be sedated, which means and IV line and anesthesia and recovery time. We also have to visit the oncologist every month, for urine test and blood work. Of course the surgery wasn’t the only procedure he needed. A week later we had to endure an MiGB scan, which detect neuroblastoma cells in other parts of the body. This scan requires required us to give the baby radioactive drops to mark his body inside. After this scan he also needed to get a bone marrow aspiration and biopsy to make sure that the cancer hadn’t reached. Needless to say all of November and December was spent at Cohen’s Childrens Hospital. 

I look back and can’t believe how much this little person has been through in such a short period of time. And he doesn’t even really know. He is the most normal, strong toddler I have ever met. He is ALWAYS smiling, which is incredible because it has fought me to smile, even through the difficult circumstances. A year later, almost $20,000 spent on hospital, anesthesia and co-pays, I realized everything was worth it. 

People ask me all the time, how come I don’t cry. I do cry. I cry a lot, but I really cry of happiness. It couldn’t been a different story, if they had never found the tumor when they did. I could not have my child with me today. I cry of happiness because I need to make sure that he stays happy and that I stay strong, not only for him but also for his siblings. I want to make sure he lives as normal as possible, and being normal includes not having your mom break down and cry every time she bathes you and soaps over the scar on his abdomen. Every MRI, is a stressful time, every time he bumps his head, every time he oversleeps, or every time he cries, it makes me wonder it makes me nervous and it makes me cry. But we, as a family, have to deal with this. We have to accept Gods will and plan and make the best of our situation. That means lots of love, spoiling (probably not that great), and just trying to be as happy as we humanly, possibly can. Because our reality is that our son has cancer and although he cancer free now, his future is uncertain, so we must enjoy the now. 

Today I am taking him to Chuck E Cheese. I want him to remember this day and play and eat to his hearts content. Bad moments in life are hard to forget, but having lots of good moments can cloud them. And I don’t want him to forget what he went, is going to go through, but I don’t want that to be his primary thought. I want him to know he can enjoy life, and be happy. This year sucked in a lot of ways, more than 5 MRIS, countless hours at the hospital, tons of shots and blood work, but it was all worth it because you ARE CANCER FREE.

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So Glenn Mason, I hope that you celebrate many, many, many more cancer free days and months and years. But most of all I hope that you continue to be as happy and as strong as you have been. 

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November 21, 2013. Tags: , , , , , , , , . Uncategorized. 4 comments.

Traveling with 2 toddlers!

Travel date: MY BIRTHDAY!

Destination: THE HOMELAND!

 

Description: I never thought I would have my children in NY, as I was very against them being Nuyoricans. But as fate would have it, it seems all my kids will be born and probably raised in NYC. So I have taken the task of trying to take them to the homeland every year. I want them to grow up knowing where half of their roots are from and what it really means to be Puerto Rican. Know about the Island, but actually explore it, learn to love it and enjoy it as much as I did. This trip was quicker than I had hoped but it was packed of adventure, emotion, and tons of fun.

To get there was the hardest task I have completed since becoming a mother, besides birthing my kids and nursing them for a year and change. The task was traveling by myself with both of them, while pregnant. Never thought I would do it. I wasn’t worried about the flight itself, as much as going through security.

 

This is how everything went down: I get up early, drop my mom and sister off at the airport, get home, get the boys ready, pack the car, and go to the airport. I get there around 11:30 for my 2:30 flight. I checked the bags in. Because my husband is awesome and he’s an ATC, we skipped the security line. This meant little. I had the two kids, the double stroller, the stroller bag, the diaper bag, and my carry on. In the carry on, there was a laptop, the iPad, and the tablet. Needless to say it took FOREVER, to get through security. I took all the electronics out, put the bags on the line, take the boys out of the stroller. I carry one of them and hold the other ones hand. Once we get through, the first tantrum begins. Gavin DID NOT want to go back in the stroller. I managed to bribe him with candy (don’t judge me, these are desperate measures!), I got to the terminal and I felt exhausted! I had time to spare and thankfully the terminal had a playground, which helped burn some energy.  When it was time to get in the plane it got a bit complicated again as I had to take them out of the contained stroller and put the stroller in the bag and give it to the person. The flight itself was quite pleasant considering the circumstances. I even got a HAPPY BIRTHDAY SHOUT OUT FROM THE NYC ATCS AND THE CAPTAIN!

While there we had tons of fun, I took the boys to Old San Juan and El Morro, we went to the beach, and then we explored my birth city.  I also had the opportunity to rent a boat and take them to my favorite place in the whole Island, La Parguera.

Coming back. That was the WORST part of my trip. I arrived at the airport early enough hoping that I would have plenty of time to make it through security. I knew things were heading in the wrong direction when my bags were overweight (I’m a super good packer, never go over 49), so I had to start moving around things. Not realizing I would have to remove everything off the stroller I started putting things in the stroller basket. Now bags checked. And the worse begins. Take all the electronics out of the bag, my shoes, put my bags on the belt, and then take the boys out of the stroller. Gavin again refused to go through security so I had to carry him. Then he didn’t want to go back in the stroller so that I could pack everything back from the x-ray machine. Finally get him in the stroller. Get to the terminal, charge my phone a little bit, go get dinner (airport pizza and a quesito, which is the one thing I wanted to bring back and forgot!!!). Now probably what made things worse, my flight was delayed 20 minutes. I was able to calm the boys down for while by walking in circles in the terminal, but to be honest I was beyond exhausted. So here begins the tantrums.

 

Gavin: “I want to walk mami”

Me: “Gavin mami is really tired and we have to get ready to go on the airplane”

Gavin: “MAMI GET ME OUT THE STROLLER”

Me: “Gavin, please don’t yell, everyone is looking at you”

Gavin: “MAMI LETS GO ON THE AIRPLANE”

Me: Crap, now I have to go pee. “Gavin, mami has to go potty and then we go on the airplane”

Gavin: now crying “MAMI DON’T GO POTTY, WE GO ON THE AIRPLANE NOW”

Me: go to the bathroom, and it was closed for cleaning, so now I had to drag my myself with the kids to the other side of the airport for the other bathroom, with two screaming kids, and hauling my carry on.

 

Bathroom done and now is almost boarding time, but our plane wasn’t even there yet. I REALLY REALLY REALLY wish someone recorded me and I find myself on youtube one day, because what I went through was beyond CRAZY. Probably the biggest test of patience of my LIFE.  I take Glenn out of the stroller and against the wall put him in the Ergo on my back. Then take Gavin out and put his harness and tie him up to the carrier, so that I can have both hands to put the stroller away. I continue to remove everything of the stroller and open the stroller bag, (While I am doing this Gavin is screaming and crying to get on the airplane and Glenn is pulling my hair). I put the stroller away. Now I have to go to the bathroom again. But the problem is I have a massive bag with the stroller (this is no red gate check stroller bag), and my carry on and I’m carrying one kid. I come back to the gate. I can feel people staring at me, some of them in pure agony, and some in shock, some of them mockingly. I brush it off. At this point I just wanted to start crying, but I held it together like a champ. I gave them a snack to calm them down. It worked for all of 3 minutes. Glenn took all the goldfish and dropped them on the floor while pulling my hair to make me move, while Gavin started crushing the goldfish on the floor. Now I’m starting to get anxious. Gavin starts pulling me towards the plane. Now second tantrum begins.

 

Gavin: “MAMI LETS GO HOME RIGHT NOW”

ME: “Gavin this is going to be a really long flight if you don’t calm down, please relax this is a 5 hour flight and we need to behave because there are other people coming with us”

Gavin: “MAMI IS NOT 5 HOURS IS 4 HOURS, I WANT TO GO NOW, CALL PAPI”

Me: how the heck did this kid know the flight was 4 hours and not 5, how the hell he knows to call papi to get us home? “Ok Gavin let me call papi”. I pick up the phone and the husband at work. It was busy so I had to wait like 5 minutes to get him.

“Gary, I never ask you for anything when it comes to work, but do WHATEVER YOU HAVE TO DO TO GET ME OF THIS ISLAND”

Gary: “Baby, I’ll try my best, it’s really busy, what do you really want me to do?”

Me: “Our plane is not here yet, can you clear some lanes so that it can get here quicker, I need to go NOW”

Gary: “I’ll do my best”

Gavin: “MAMI LETS GO, THE PEOPLE ARE GOING”

Me: “Gavin, if you’re not good Papi won’t tell the pilot to let us go”

Gavin: “Papi says we have to go home!”

 

Plane gets here and they start boarding, of course they start boarding people in the first rows. So third tantrum begins.

 

Gavin: “MAMI LETS GO NOW I WANT TO GO HOME”

Me: “we have to wait our turn baby, see there’s a line”

Gavin: “I DON’T WANT TO WAIT OUR TURN I WANT TO GO ON THE AIRPLANE”

Me: someone please shoot me. I see the same people still staring at me like they were watching a movie and wanted to see what was going to happen next. I think secretly they all thought I was going to loose it and hit one of the kids. Glenn is still pulling on my hair through all of this happening. And now we go on line to board the plane. We get to our seats, I secure Gavin and put my stuff away. We take off and both of them are out cold! Yet I couldn’t sleep. I kept replaying everything in my head, and thinking to myself I can’t believe this just happened.

I finally doze off and woke up to the captain welcoming me to NYC (Not the regular welcome, but over PA announced “Welcome home Gaskin family”). When we get off the plane, I have to open the stroller and put the boys in it. The guy at the gate is trying to rush me and I give him the deadliest look. He noticed and replied: “Sorry, I didn’t know you had that much to do”. First thing I do when I see my dear husband is hug him and without wanting to I start crying.

 

The question of why I did all this and what it means, I answered to my therapist a week later. I did it because I needed to prove to myself that I could. And it means that I can do anything. Not claiming to be super woman, but can be sure I could be if I wanted. I always compare myself to other local moms who take their kids to the library, to the playground, have regular play dates, different classes. Yet none of them drive by themselves to another state, or would even think of flying to another country under the circumstances that I did. So yeah it made me feel powerful. It made me feel weak but yet invincible because I was able to overcome the situation and gracefully manage the stress I was under. Needles to say I will not be doing this for a loooong time!!!! 

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July 18, 2013. Tags: , , , , , , , , , . Uncategorized. Leave a comment.

May the Force be with me… Even past MAY!

It’s been a while since I have jotted down anything. May has been a beast. Emotionally, physically, in every single aspect of life. It has brought new challenges as well as new adventures, and it has taught me that life is just full of unexpected blessings.

It started with me leaving Facebook for what lasted maybe a week! I wanted to spend more quality time with myself instead of with the newsfeed. This brought some challenges as I missed some events that were in the calendar. I made my own calendar anyways and decided that we would do something fun every weekend in May.

There was three Baby Expos for me to attend. The Queens Mamas Expo, The NY Baby show , and the Big City Moms Biggest Baby Shower (an event I look forward to the whole year). If you are wondering why I like to go to these events, there is a simple answer, I LOVE BABY STUFF!!! I am obsessed with strollers, and bottles, and carriers, and baby toys. There is always something new and exciting to look forward to. It makes me want to keep having babies so I can keep having all these things! Seriously I have a problem. I have individual details on these events that I will post later on.

Gavin had baseball and there was Mother’s Day weekend. This Mother’s Day was so special. I got to spend it with the two most important moms in my life, my own mother and my sister. We had such high quality, amazing family weekend, with activities that included the zoo, shopping, Smorgasburg, and lots of picture taking! It was very special as my sister and I once again find ourselves in the same predicament.

May also let me see some old friends, that I have missed dearly, and it was full of birthdays and party fun. From first birthdays to engagement parties, we had a little bit of everything going on. I also got to spend an amazing weekend with my siblings. We see each other maybe once a month but my parents are always there. This time around, due to a family death, my parents were away and the 5 of us were “alone”. Of course, my sister had her 3 kids, I had my 2 and the dog and my brother had his dog. We ate, we talked, we shopped, we just had a great time. To me this is important because I know so many people that don’t have siblings or if they do, they don’t have the same relationship that I have with mine, and I think it is such a blessing for us. During that time we had lunch at a little food truck in Woodbridge, VA. This food truck had the most amazing Puerto Rican food I have ever had outside of the Island. The 2 hours we spent there, felt like we traveled not only in time but also we were back in our Island, we were just hanging out somewhere close to the beach, with a nice breeze and the sun shinning down. (All this sounds so corny, but even though we fight, ALOT, we are incredibly close, MAYBE TOO CLOSE!!)

As I look forward to June, which except for the death of my great-great aunt, has been amazing, this is shaping up to be an incredible year. Glenn is still cancer free, and our boys are growing into incredible little people, we are excited for the adventures we have had and the new ones coming up. Puerto Rico here we comeeeee, SWAGGER WAGON we will come get you really soon, and meeting the new member of our family. Come December our adventures will multiply!

June is looking good, I am ready to celebrate my 31st birthday. Which will be, I have to add, my third birthday pregnant! And yes I know it’s crazy, but we wouldn’t have it any other way. Let the craziness begin.

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June 14, 2013. Tags: , , , , , , , , , , , , , , , . Babies, experiences, new year, Parenting, toddlers, Uncategorized. 1 comment.

A big week in a small dose

(This post was originally about 2,500 words… I did the best I could to edit down)

How does a 9 month old change the lives of people he doesn’t even know? How does a 9 month old make people, who have never been to Church pray? How does a baby make people who haven’t spoken in years talk to each other? I’ll tell you how. By teaching adults to get over the bullshit because at the end of the day there is nothing worse than suffering from a health related issue. My son just went through what has got to be the hardest thing a baby and a parent could ever go through.

Hospital stay, tests, surgery, and the dreaded Cancer diagnosis. Yes, cancer. Neuroblastoma. After a scare with bloody stool, an x-ray, sonogram and MRI, a tumor the size of his little heart was to blame for our visit to the hospital. Sitting in the room with a group of 5 other doctors telling me that the way to attack this would be surgery to remove the tumor, was the hardest 20 minutes of my life. Holding the tears that whole time was like I was dying. As soon as I left the room the river started to flow as I couldn’t stop crying until the next day. Not only did my son got diagnosed with the second most common type of cancer, but the surgery was brutal. He had a microscopic camera inside his body, the incision in the removal site, a decompressing chest tube (to avoid swelling of the lungs), an IV on his foot, a central IV line at his neck, an artery line in case of blood loss, a breathing apparatus down his throat, and electrodes to monitor his heart. Yet, with all of this going on, this child proceeded to stand up after anesthesia wore off. He stood up in his little hospital crib like nothing was going on. His recovery was so good that he didn’t need to go to the PICU (Pediatric Intensive Care Unit). He was in recovery a total of 3 hours and next day he was his happy self. We left the hospital Friday and this kid still amazes me. He is trying to walk, and laughing his merry self. He hasn’t even complaint about pain even though his scar is about 5 inches long. This baby and what he has been through has made family members communicate with each other. It has made people pray for him and his recovery. So much that I have a list of hundreds of people who sent their prayers for him, some of whom are not even religious yet found it in their heart to give us a prayer! I never thought I would be strong enough to type this and not cry. I think I have more faith than I thought I had a week ago. Seeing how my little baby has been through so much and still manages to enjoy his little life, shows me that no matter what’s going on, he’s strong and he will get through it.

It’s crazy how things happen and it bothers me that this happened to my sweet child but I also think everything happens for a reason and I am not the one to play God. He will not let us go through something we cannot handle. It reminded me of the Serenity prayer, which reads “God grant me the serenity 
to accept the things I cannot change; 
courage to change the things I can; 
and wisdom to know the difference. Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world
 as it is, not as I would have it; 
Trusting that He will make all things right 
if I surrender to His Will;
 That I may be reasonably happy in this life 
and supremely happy with Him
Forever in the next.
 Amen” (Reinhold Niebuhr).

Our battle is only beginning. We will not know anything until the tumor biology come back and the next three test are done, but I just know that today we are happy. Today my baby played, laughed, walked, and enjoyed himself in every possible way and that is the only thing that matters for him and that is the only thing that I need to be strong for him and get over this.

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November 30, 2012. Tags: , , , , , , . Babies, cancer, friendships, Parenting, toddlers, Uncategorized. Leave a comment.