Saturday, May 30, 2009
The verdict is no radiation at this time. Dr. Chen says it can wait for now because it's too risky in the area where radiation would be given. The heart and the lung could be compromised and it would not be good for Marco.
Dr. Chen spoke with Dr. Chow (chemo doctor) who is also the prime investigator at City of Hope for the Phase III Trial of AP23573. He also agreed not to do the radiation now. He wanted to give Marco a chance to start on the AP23573 because tests showed that the chemotherapy has worked to kill the live cancer cells in the lung tumor.
We are crossing our fingers that this Phase III pill will be the real thing and not a "sugar pill" which in any case it wouldn't matter in the long run because a lot patients with sarcoma's will benefit from all the information gathered.
These last couple of days has been somewhat of a stress since Marco had a lot of questions and concerns in regards to the Phase III Trial. After reading and re-reading all of the paper work that was given he decided to go ahead and do it. This, Monday June 1st he has an appointment to meet with Dr. Chow to see what is going to be needed before they start or if they still need to do some exams to verify that he is still a candidate for the Phase III Trial.
Marco is still having some pain but has been up and around...he continues to test himself at times but now he knows what his limits are. (It's about time!)
Well the kids are now on vacation...for a moment, Marco thought that he might have to do some radiation and all he thought was oh no that meant that the kids summer would be spoiled again and that he and the kids (and I) would be at COH. So he was relieved when Dr. Chen said no more radiation.
Like Marco says, you try not to say that you get use to it (being at COH)...but you do. City of Hope has become our second home away from home. Under the circumstances we wouldn't have it any other way.
I would like to thank everyone who have been calling Marco lately, it has been a great treat to see Marco talking and laughing with you guys.
I will let you know what happens in the next appointment...
Posted by Moshura's Sister at 10:51 AM
Tuesday, May 26, 2009
Well it's been about 1 week and 4 days that Marco came home from the hospital since his major lung surgery. It's amazing to see Marco right now, walking around, making jokes, laughing and just being himself again. Just two weeks ago he was not looking good. He couldn't breath right, couldn't talk for a second because he would exhaust himself and getting up out of bed with a chest tube in your back was a chore.
He has been walking around and taking evening walks to try to stay active so the pneumonia doesn't come back and the lungs can get all the oxygen they can get.
He built a Hot Wheel for NuNu for his 4th birthday this past weekend...it was a chore but he did it....and he was in some pain but he did it anyway. He wants to do so many things but as he tries to do some of them he finds out pretty quick if he can do them or not.
If you were to see Marco after each surgery and even see him today you would never imagine all that he has gone through and you could never imagine to see the huge battle scars he carries on him. Those battle scars are of a true warrior. All of Marco's hair had fallen off with the four cycles of chemo he did and during his one week stay in the hospital it all started to grow back. His eye brows are really dark and the hair on his head is really light and it's so soft. We tell him we started to like the bald look on him and he just gives a smile. Speedy recovery honey!
Rally Monkey's! We are fighting back! With a new plan of attack.
Marco has made a decision to participate in the Phase III trial of the AP23573. I am so proud of him for deciding to go ahead and do the trial. This will not only help him but others as well. This medication could be the pill that will help sarcoma patients with different types of sarcomas, I hope.
We all need a cure for some form of cancer and you bet that Marco will be one of the ones who says Ok! I will do it. Even thought it may be a placebo, it is still helping in the studies being make for this pill.
Fighting back is what Marco does best. This cancer has no ideas who its messing with. Marco your a tuffy and we tell you all the time. You are made of some tuff stuff.
Today he has a chest x-ray and a post-op appointment with Dr. Grannis the surgeon who did his surgery. (He did a great job) I will post an update in this post later or make a new one. I will let you know after we come back from City of Hope.
Posted by Moshura's Sister at 5:30 PM
Tuesday, May 19, 2009
This is an essay that DLP submitted to a radio contest on "How I cope with cancer":
Cancer. The disease is unforgivable. It brings pain, tears, heartache, and for some it brings out the warriors with in. Cancer takes a lot from a person, emotionally and physically. Not only does cancer affect those who have this disease but it affects all their loved ones around them. This disease can have a terrible impact on a family.
I am fourteen years old and my father was diagnosed two years ago with soft-tissue sarcoma cancer, an aggressive reoccurring type of cancer. My dad was a mess emotionally for the first couple of months along with my mom. Although they have their emotional out burst from time to time. I had never seen them cry so much or stay in bed for so long. It was devastating news, especially for my dad. I never want to cry in front of my dad. I try to stay strong. I don’t want to make him feel more pressure to worry about me then he has to. I tend to cope on my own. I do have family which help me relieve stress. I know they help out my dad as well. I try to think in reality of the cause and effect possibilities. Such as for surgeries there will be mood swings and self-preparation before. After there will be recovery and treatments. Then side effects of the treatment tiredness, vomiting, more mood swings, self doubt, and lots of mind wondering. With every surgery there’s a possibility of death. In my mind I just have to realize, for this cause that will be the effect. There is nothing I can do no matter what cause or effect is. The biggest cause event has already taken place. Now its the doctors job to take the cancer out of my dads body, and also my dads jobs to think positive and self heal his own body.
Over the last two years my dad has had three surgeries (soon to be four) three months of radiation and four cycles of chemo. As these numbers increase I can see my dad slowly giving up as in getting tired of it all. My dad is the strongest, most positive, most inspiring man I know. He has made amazing recovery and treatment results. He even has his doctors in awe due to the fact that the type of cancer my dad has does not respond to chemo very well and his tumor shrunk more than half way. He also didn’t lose as much weight as expected. Although he did lose his hair and had other side effects, and yet he still keeps pulling through. As the more the chemo progressed the more he started getting antsy and restless, I don’t blame him, he just wanted to be home already and not in the hospital. The more surgeries and more difficult they are. I see him in a way expecting death. Though the treatments help they still have their setbacks. Its not like my dad looks forward to be in the hospital for weeks at a time and dealing with the side effects there or at home.
Coping is hard to do, but yet still doable. Many people have different way to cope. We all have to cry, scream, laugh at some point in time. I cry at times when things become to over whelming, but then again what else is there to do but cry. I haven’t reach the point to scream, yet. Laugh, laughing is the best therapy there is. Making jokes of the effects of the surgeries or chemo helps to raise a little spirits in my family. For example, my dad has lost his hair due to the chemo so some of us tell him to go comb his hair or put gel on his hair. My dad gets some kicks out of it and makes fun of himself. The laughs now and then are good, they aren’t always around when you may need them most.
Reassuring. That is key to positive thinking and well being. I always have to reassure not only myself, but my dad as well that he will be fine and no matter what happens we will all be fine one way or another. I also have to accept the realities of the toll this cancer on my dad and family.
We now are a day away from surgery number four, which is one of the most life risking major surgery my dad has ever had to encounter. The thought of death has been going through everyone’s mind so I asked my dad if he was scared to die, he relied “a little.” I reassured him that dying is a natural thing in life and that its not something to be afraid of. At some point in our life we must go and there is nothing anyone can do about it. We all must accept the fact of death and we must deal with it although it may hurt and cause pain its what our future holds for us.
I believe that with in myself coping I realize the outcomes of everything and no matter what it is I must accept it. My perspective on life has changed I don’t believe in things that I once did. Life itself is too short to be so focus on the little things. You should just let life take you on an adventure and live freely. With the situation my dad is in, that’s the basics of it all. Not to worry so much on the little things such as paying bills, loosing the house, or what will happen if you don’t get a job soon. Sometimes you just have to breathe and focus at the task at hand. Getting through surgery and back to some want yourself mentally, although it may not show physically. Cancer a thing of purely torches a person, which also brings hardship and test your body on how hard it can fight and how far your willing to go to win the battle. In over all, CANCER SUCKS.
Posted by Moshura's Sister at 10:42 PM
Monday, May 18, 2009
From the Wife:
Last week was tough...Just thinking of what could happen and what was happening in the surgery room was too much to think about at times...sitting in the waiting area having time pass by and not knowing is a horrible thing. Your stomach is turned in so many ways and you can't even call the staff to see what is going on cause they just took him in 20 minutes before and it seemed like an hour had gone by.
I had several scenarios that the doctor said could happen but he couldn't tell me anything till he was on the operating table and figuring it out himself. There was a lot at stake this time around.
The first thing was to place the scope (camera) in the pleural cavity and see if the cancer had spread in that area. If it had then there would be nothing else to do but to close him up and do another chemo round to see if that would do the job. The pleural cavity is an inoperable area. (We hoped it would not be this one)
The second was to go in with the scope and see where the tumor was and what it was holding on to. If it was attached to something, they needed to see to what. The plan was to remove 4 ribs and the chest wall, remove the tumor and reconstruct his side to hold everything in place.
We were all excited when Dr. Grannis called us all in to give his findings during surgery and he asked if we all wanted good news. We all said yes, of course. He said he didn't remove any ribs or the chest wall but he did have to do the major surgery (a cut of about 12 in. from back to front on his left side) to remove the tumor and that he would be in great pain. We all cried tears of joy! I couldn't believe what I had just heard. It's amazing what the doctors at City of Hope can do.
Marco was transferred to ICU to be under observation because of the type of surgery he had and needed to be monitored for other things.
It had been the worst day I could recall from all the times that we have been at City of Hope. The doctor telling us we had to watch out for infection and fever, which probably wouldn't happen .... but it happened. We were all very scared and having the word "pneumonia" in the conversation was not good at all. I tried my best to have Marco rest and not get too worked up about what was happening but I think we all did our part as best we could. The high heart rate was not helping either and not to mention that he couldn't breath. That is the part that I hate the most when I can't physically do anything to make it any easier. As I headed home that night I couldn't sleep just wondering what was going on and if his fever went down , if he was breathing right, if his heart rate was down. I don't think any of us slept right all week. Nerve-wracking I tell you. This is the time were you hate the fact that Marco has cancer and you want to choke cancer for having him go through all of this.
I was so excited to see Marco up and looking good than the nights before. He had a more calm look to him. His heart rate was down and his breathing was better too. A whole new person sitting up in his hospital chair. You can't even imagine the joy to see that sparkle in his eyes...knowing that he felt so much better.
They had him get up a day after surgery and that was painful for him...but the fighter in him amazes me. He went out there and walked more than what the nurses wanted him to walk. Everyday after that he would double that walk. Since they saw he was determined to go home they started physical therapy and he was good to go by Friday.
The pathology report came in on Friday and the doctor was excited to report that there was no live cancer cell in the tumor that was removed from the diaphragm and there was no cancer in the pleural cavity. This was good news...very good news. Because we know that sarcoma cancer is very aggressive and is known not to react to chemotherapy but had. I have said Marco has a very positive attitude and mindset that he will beat this. The chemo worked and it killed all of the cancer cells in the tumor.
He was told he is a candidate for a medical trial coming up, this would be a medication given every day for patients with soft-tissue sarcoma that meet the requirements. Marco fits the requirements now. This is a decision that needs to be made within a couple of weeks. A lot of paperwork was given with pros and cons and what may or may not happen. The other thing would be that a placebo would be given to some patients during this trail but only the FDA would know who was given the "sugar pill". A lot of information could be collected from this trial that may help Marco and other patients too.
I am so very happy to know that there is NO MORE CANCER (for now). But we will not let our guard down and we'll stay focused on this upcoming trial. I will let you know what happens in regards to Marco doing the trial or not.
I would like to thank everyone again for all you do for my family. We truly appreciate it all.
Marco, Myself and our kids are very lucky to have each and everyone of you.
Posted by Moshura's Sister at 11:32 PM
From the Wife:
From the bottom of our hearts.
Thank You, we feel is not enough to say and to express what we feel. We were shocked and puzzled by what everyone has done for us. I say shocked and puzzled because we had no idea what was going on. All we knew was that ODAT and LazyT had to go to a banquet of some sort for LazyT's job and S3U5 was out with Raul at another banquet and Momma M and Leezy were going to stay at COH after hours. To our surprise everyone arrived at S3U5 house at the same time and they let the cat out of the hat. They all exposed their sneaky sneak sides.
We had a long day at COH and Marco was moved from ICU to a regular room and we were all emotionally drained. We couldn't see straight, my tears were just flowing with emotions and not to mention DLPs. It's amazing what you all have done for us. There are no words we can use to express how thankful we are.
Our family has been through a lot and we have hope that we are looking at a better tomorrow, everyday. We appreciate every day and deal with it one day at a time.
There are so many BIG HUGS we want to give each and everyone of you. Your donations will help us and give us a little peace of mind.
We always tell V that it's hard to be the ones on the other end of a situation especially because we were the ones always being there for everyone else. Doing things for others was a highlight in our lives.
We never ever did anything expecting something back. It's especially been very hard to feel like we can let go and have someone else do something for us.
Thank you again to all who attended and for all your letters, e-mails and notes.
Thank you for being there for our family. You are all GREAT RALLY MONKEYS!
With lots of love,
Posted by Moshura's Sister at 11:34 AM
Friday, May 15, 2009
NOTE: This is from an older post. Donations are always welcomed to help get the family through these hard times. Thank you! -Moshura's sister. 12/2009
Marco is on his way home!!! Doctors performed tests on the liquid/gel that was starting to form in his lungs and they did not detect any cancer cells, which is GREAT!! More updates coming soon!
This is from V:
Last night Raul & I held a Fundraiser for the family at J Lounge in Los Angeles, Ca. Our family and friends came together to show their support, their words of encouragement, positive thoughts, and words of prayer. All shared joy in hearing the latest updates on Marco's health.
News of Marco being transfered out of Intensive Care was received with an enourmous cheer. We all spent the afternoon sharing warrior stories about the whole family to all who came to show their support. Everyone signed a beautiful Journal with personal notes for the family that were received by Marie with an open heart. Marie has heard all of your best wishes through our daily conversations but reading your personal notes were a true blessing. In tough times like these your words of encouragement and support are priceless.
With the help of all, we raised $ 2,500.00 in two hours for the family. Your generosity is greatly appreciated. In addition we thank those that have sent us letters and card with your generous gifts. We wanted to thank Maricela, a lifetime friend of the family, for starting the silent auction idea and helping make it a success. The silent auction helped increase the fundraising endeavors. Thank you to all who sent prized donations to help our cause. Our cousins Brenda & Pedro gave prized USC Football tickets. Our brothers and sisters donated items and tutoring services. Our friends Maricela, Jorge & Patty, and Jenny & Jim generously contributed Movie Tickets, Limousine Services, and Movie DVDs. We truly appreciate the support.
If you were not able to attend the Fundraiser you're contributions are still kindly appreciated!
PLEASE EMAIL US AT SARCOMASUCKS@GMAIL.COM
Friends & Family bring richness to life...we are rich to have you all as part of our support team.
You all rallied to help our family's fundraiser,
V & R
Posted by Moshura's Sister at 8:39 PM
Tuesday, May 12, 2009
Will get a more official update from The Wife once they learn why Marco has this fever...
-Tumor with inactive cells removed from diaphragm, chemo worked to kill off those cells, still not sure about the liquid that accumulated in his lungs from previous surgery/pneumonia, being tested for cancer
-Marco's in a lot of pain (level 8 or 9), couldn't sleep all night
-Has developed a fever this morning, being closely monitored, x-rays taken, waiting to hear from Doctors
Posted by Moshura's Sister at 2:54 PM
Sunday, May 10, 2009
First of all Happy Mother's Day to All the Mommas!! I hope you had a great day.
We're all praying that things go well tomorrow. It's a roller coaster all right and we'll have to see where it takes us for a ride Monday morning.
We love you Marco and we know you always enter these moments open and accepting and courageous as always despite the pummeling you take from this cancer. You are in our prayers.
Posted by Moshura's Sister at 10:31 PM
Saturday, May 9, 2009
From the Wife:
We continue to thank all of the blood donors. This is so awesome to see family and friends donating. Everyone at the Blood Bank knows the Rally Monkey already. As some of you experienced the most amazing treatment that we deal with on a day to day bases with all of the staff at City of Hope. All of the volunteers are very passionate and dedicated to their work, some have or had loved one whom have or had cancer and they dedicate there time to give back to City of Hope. I am glad that each and everyone of you had the chance to experience this piece of compassion. All of you are were very brave and to Gaby who I feel was the worst of the bunch - still had a smile on her face to say her story on how hard it was to donate and how brave she was to be determined to give blood for Marco. Now that is love for the man.
Thank you again!
Posted by Moshura's Sister at 4:08 PM
Tuesday, May 5, 2009
From the Wife:
We would like to thank all the brave family members who donated blood. I know it was hard for some, especially Gaby, who faints at the sight of blood. But she was a good sport, even though she was poked 3 times and has bruises to prove she donated. She still managed to do it. Great job! Also to ODAT who waited one year to donate and she finally gave blood for Marco on Sat. Yahooo!
You are all good sports and we are proud of all of you. Thank you for posing with our rally monkey too. I hope he was a comfort to you while you were getting pinched.
Please share your blood donating experience with us, even if it wasn't all that good...:)
THANK YOU AGAIN! WE APPRECIATE everyone donating.
Posted by Moshura's Sister at 10:20 AM
Friday, May 1, 2009
I think a lot of people don't believe me when I tell them that my big brother and his wife have been in love since they were kids. Okay, now don't get freaked out, the Wife is not a child-bride in this photo, she's a "dama" - a "gentle-lady" with her "chambelán" or "gentleman" Marco at a friend's Quinceañera ages ago :). Ok, only a few dozen years ago... How old are you both in this picture anyway?
Well, these dapper looking cutie-patooties continue to amaze me and I always think of this photo in all of its innocence and remarkable beauty when I think of my brother and his wife's love for each other. I just thought I'd mention it because its Friday and because I need to look at something beautiful today cause its been a hard week. I hope you all enjoy it. When you see the Wife and Marco, pinch their cheeks and ask them how they've managed to stay so cute all these years...
Posted by Moshura's Sister at 3:51 PM