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.

The “Debbie Downer”

I have had a rough couple of weeks. Between being physically exhausted (taking care of two toddlers and being pregnant is hard work), emotionally drained, the excessive heat, and just regular shitty things that happened, it’s been HARD. Yet no one would really know! I am a negative person, married to a very positive person, after 12+ years his positivity has rubbed off on me (but also therapy has really worked)…

See, from being a negative person I never thought I could fix problems. I would just complain about my problems and not do anything about them. After having kids, although it was harder because I was so overwhelmed I decided to change and try to find solutions to my problems. I had no mommy friends, so I went online and got some! I was tired, so I took it one day at a time, and took breaks in between. I had no help, so I hired some. I was bored, so I got museum memberships and started going out.

I can’t say I don’t complain anymore, I believe we all have a Debbie Downer inside of us, but I just don’t feel like dragging everyone down with me, so I just complain to my husband!!! LOL, poor guy. But recently I have met a couple of people who are true Debbie Downers and I finally feel my husbands pain every time I complained to him!!

Don’t get me wrong, every single person has the right to complain and we all do, because we are human, but when you complain every single day for things that you can fix then that makes me mad. It makes me mad because I have come to the understanding that there is always going to be someone who is going through something worse than you.

I don’t want to diminish people’s problems, but sometimes I hear moms complain about things so trivial like how the kids didn’t complete their art project at the library, and I think to myself, damn my kid has cancer and I feel I shouldn’t complain, because his cancer is treatable, as opposed as kids who have cancer and have to go through chemo or radiation. Those are REAL problems. Those are parents who can really complain. Yet you never really hear them complain. I admire that.

Like I mentioned before I have had two rough weeks but everyone keeps telling me I look good. My answer has been, just because I feel like sh%$t doesn’t mean I have to look like sh%$t!!! So although I am still a rather a negative person, I am not a Debbie Downer, I think that problems have solutions, it’s up to us accept our solutions and move on.

July 25, 2013. Tags: , , , , , , , , , . Babies, cancer, experiences, friendships, Parenting, toddlers, Uncategorized. Leave a comment.

Relationships??

Adversity changes everything. From the way you feel to the way you react, to the way you interact. Especially with your family and friends. I have an amazing family, we are a bit nuts, but we love each other very much so. Since the diagnosis of my little boy everyone has reacted in different ways and I, in turn have no idea how to react to their reactions! An example is how my brother, who is the godfather of my baby, had the crazy idea to get a tattoo of my baby’s name and the date of his surgery. I understand why he feels that way. On the other hand, my other brother, had no idea how to react so he just didn’t call me at all. He was keeping update via my parents, but didn’t know how to speak to me. It’s hard to understand how people feel the way the feel.

Then with friends is even more conflicting. Be it because they don’t know how to react or don’t know what to say, but I have had mix reactions from different people who I didn’t expect. I have to say I don’t want to name names, but there’s a friend who has been amazing!! Lets just say our kids have 50% the same racial combination! I really felt and feel so much love from this person, and her family. The attentions have been amazing. On the other hand there are friends who have, to this day, even asked how the baby is doing. Hey, some people still don’t know what he had was cancer!

Needless to say, between hospital stays and visits for follow up tests and checkups, plus lonely holidays I have had way to much time to think. The best things in life are really free. You will get what you put out there. I really want to put out there positiveness. Just hope that the next day, week, month, year will be better. Not monetarily, although that would be ok too, but more about the blessings and small joys of life, like healthy happy children, and a wonderful husband…

February 17, 2013. Tags: , , , , , , , , . Babies, cancer, experiences, friendships, Parenting, toddlers, Uncategorized. 2 comments.

The Blanket

I am lucky to have a very talented mother. Not just talented because she’s my mom, but talented because she can anything. Her creative persona is always on high. She can knit, cortchet, she’s a graduated pastry chef, and every time I see what she can make I am amaze at the artistry in her craft. Everything is done to the best of her abilities and the highest perfection any artist could have. She has made me so many hats and scrafs and she has made my boys a couple of baby blankets.

When my sister got pregnant with her first baby almost 10 years ago, my mom made me  a blanket for my future baby. It was white with green turtles and green trim. I saved that blanket until November. I was saving for my future daughter, but for my son’s  surgery in November I took the blanket out and asked the nurse to keep it with him at all times (I have always loved turtles and in Chinese culture they are considered good luck and long life). This blanket was special. So on Monday I brought it with me to the hospital as baby was getting follow-up MRI (I’ve been trying to explain to friends and family that, even though he is “cancer free”, there is a 10% chance of recurrence, and we have to monitor the boy for 24 months- this period includes, MRI’s, urine test, oncologist visits, and so on). Every time he has an MRI I like him to have the blanket around because he does have to be under anesthesia. This always freaks me out.

After the hospital we had to go run some errands. It was a rainy, gloomy day. We headed to Babies R Us, the first stop in our run, I go what I needed, then we went to look for a couch, went to a couple of place and nothing, and after that decided to go to Ikea, when I’m getting together the stroller I can’t find the diaper bag. So I don’t really mind. I keep going like nothing since everything in the bag was replaceable, until I remember that the blanket was inside the diaper bag. I start crying like a little maniac, calling every place I went that day. Still today I called and nothing. No one knows, saw, or has the diaper bag. I didn’t even know how to tell my mom that I had lost the blanket. When I did she asked: “which one?” I replied with a description and she said “I have no idea what blanket that is. I don’t remember it at all”. It made me feel better for a minute, but I’m still hoping that I will call Babies R Us tomorrow or the hospital and they will have my diaper bag with the blanket in it. It might be superficial to some that this is why I’m weak. I’m an emotional mush when it comes to these things, even our couch, which we just got rid off and I cried. Because there are so many memories attached to that material object. To think my baby had the blanket during that time of pain, brings tears to my eyes, yet I realized that the most important thing is that those memories, and not the material things. It is up to me to remember and nurture those memories so that I can pass them on to my boys when they have their boys and so on. Memories are what keep us going. Making memories, living them, reliving them by passing them on and so on. So as I come to terms with the fact that I will never recuperate my turtle blanket, I enjoy the short memories I lived with it.

February 12, 2013. Tags: , , , , , , , , , , , , , . Babies, cancer, experiences, Parenting, toddlers, Uncategorized. 3 comments.

Breastfeeding

I know there are so many blogs about breastfeeding and how and that and why and such.

This is how I see it:

One of the things I longed for the most when I got married was to have a baby, and one of the best reasons for me to have a baby was to nurse that baby. It was a picture I had in my mind since I saw my mom breastfeed my little sister. When I found out I was pregnant with #1, there was no doubt in my head I would breastfeed, but it was not commonly supported by the people I knew. So when my baby was born and I went to latch him on, it hurt like a bitch!!!! IT WAS PAINFUL! He did not latch on properly. To add to this he was 3 weeks early and very, very hungry. My milk was coming in good as opposed to other moms who struggle with milk production. After two weeks my milk production slowed down and his appetite increased. This meant not very happy baby. One night while visiting my parent I couldn’t handle the cry anymore, to add to this he still didn’t have the right latch and my labor pains where getting to me, so I went and bought formula. Everyone was so happy when I did, because the baby was full and happy. Of course giving him the bottle didn’t help the latch because now he had nipple confusion. When I got home I decided nothing was going to stop me. I went online and did a ton of research- research I hadn’t done before because I assumed the baby would just suck on nipple and milk would come out!

I also went and bought Fenugreek and Mother’s Milk Tea. I took it by the book, threw out the rest of the formula and set out to breast feed my child exclusively. I also attended two La Leche League meetings.

It was amazing how much everything changed once I knew what I was doing and got some support. After the labor pains stops and I trained baby to have a good latch, stress decreased and with the Fenugreek milk started to come in. I could not believe my eyes when I saw how much milk I could pump! I always planned on nursing for just the first year and I must admit I was nonchalant to stop, maybe because I was already 3 months pregnant with #2, so I was beyond exhausted, but also because I felt maybe I should kept going. But no, the day of his birthday I nursed him in the morning and that was the last time he latch on to my breast.

Now with second it was a bit different. I felt like a pro!!!! Except the labor pains where way more intense and it was hard to nurse during his time in the hospital. But as his birthday approaches I’m starting to wonder how I’m going to stop. I had a reason to stop with #1 (I was pregnant with #2), but now is different. I am conflicted. I want them to be equal, I am also tired and want to give my body a break as for the past 3.5 yrs it has been carrying or feeding a child. I really want to get back in shape before #3 and it’s just not something i want to do while nursing. I also feel differently with #2 because of everything his been through with the cancer, so what to do. That is my conflicting dilemma.

I want women who read this, or even men to understand that breastfeeding is just a beautiful thing. It is a way a mother nurtures her children in the form of providing them with the best possible milk. Breastfeeding is a FULL-TIME JOB. It takes time to feed baby, produce milk, pump, etc. Support makes a big difference as does education. Research is key for success! And also not quitting! I love nursing my children. In private in public, wherever-whenever (Shakira style).

I am an advocate for breastfeeding! This makes women 20 times more powerful than men, just because it’s something they can’t do! It’s super cost effective!! Hello, formula cost 20 bucks average a container! And there’s really no reason not to do it! Any problem that can come from breastfeeding, with the right support and information you can solve it.

I will update when my time comes to make a choice! To keep going or stop? that is my dilemma…

January 12, 2013. Tags: , , , , , , , , , , , . Uncategorized. 1 comment.

Cancer Free- For now!

After what seemed like an awful Thanksgiving, thanks to the surgery and whole neuroblastoma cancer diagnosis of my adorable, not even 10 months old at the time, his battle continued after he was discharged from the hospital. He was discharged on the Friday after thanksgiving, and our appointment with the Doctor was the following Tuesday to determined exactly what they had removed from his body. So Tuesday came, and in fact it was neuroblastoma. They removed more than 99%, which is great, but due to his age, the doctor decided to do a full cancer testing on him. He wanted to make sure that the cancer didn’t spread and that it was only contained to the tumor. That same Friday the doctor had already scheduled his Bone marrow test. So the test was supposed to be 20 minutes but because of his age it ended up being the whole day. Got to the hospital around 8 am, they draw blood and then we had to wait for anesthisia people to come and sedate him, then after the “procedure” we had to wait 2 hours for a follow up sonogram. They do this test in the same room where they do all the chemotherapy for children. It was a lot of mixed feelings seeing all the kids receiving that treatment and thinking that my little baby might need the same therapy. Yet I noticed how well this kids were being treated and how happy they were. Then I had peace in my heart. I just let what would be, be. 

That weekend we left for Maryland. We came back Saturday for a week from hell! Not only were both boys fighting a little cold. The baby had a week full of testing. On Monday he had a pediatrician appointment to be cleared for the following test. Tuesday he went to the hospital to get blood drawn and a shot of radioactive material for testing the next day. Because he is such a hard stick (for IV) they left it on and sent him home with it still connected. Wednesday was his MiGB scan, this is a nuclear scan to see where else in the body the cancer might be hiding. The test started around 11 am we came home about 4 pm. Thursday he was off and we had a lovely playdate. Friday was his bone scan. He was there again all day with anesthesia and all. The best part about these test was that the results were available the same day. Each time when the doctor called I celebrated a small victory against cancer. Monday was our final appointment for the next month. All the test came back negative. There is no cancer anywhere else in his body. But because it is cancer he needs to be monitored for the next year. The schedule for him is a bit tough but nothing that he can’t handle. The week of Jan 28 he has his 12 month check up and shots, as well as MRI & blood work. Then February is another MRI & blood work and then again the end of March. After that we have a break until the end of June and then 3 months after that and then another 3 months after that. This is to make sure cancer hasn’t grown back. So as you can tell we are cancer free for know and I’ positive we will remain cancer free but the battle is only beginning. Another year of testing and monitoring. On a liter note, he is now walking!!! 6 days before turning 11 months the little kids is up and away… The emotions are too many to try to explain. 

December 25, 2012. Tags: , , , , , , , , , , . Uncategorized. Leave a 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.