Parents Perspective - Dad - Mom
I’ve asked my parents to provide their point of view as parents dealing with Hodgkin’s Disease and what they’ve encountered during this journey.

From My Dad’s Perspective…

The sole objective of this information is to provide assistance to a patient or parent how they can help themselves or their child with Hodgkin’s disease or recurrent Hodgkin’s disease. If you or your child is afflicted with another type of cancer or leukemia, some of this information might not be as beneficial. This walks you down the path Alese has taken medically and issues we’ve encountered throughout this journey.

Diagnoses
There are five types of Hodgkin’s disease (HD)

  • Nodular Sclerosis (NS) - Accounts for 60% - 70% of all HD cases
  • Lymphocyte Predominance (LP) - Accounts for 5%
  • Mixed Cellularity (MC) - Accounts for 20% - 30%
  • Lymphocyte Depleted (LD) - Accounts for 5%
  • Nodular Lymphocyte Predominant (NLP) - The 4 types above are "Classical" types, NLP is in a category of its own.

    Treatment
    The most commonly used regimens for first time Hodgkin’s disease patients in the U.S. are listed below and they’re commonly referred to by the following acronyms:

    ABVD which consists of Adriamycin (doxorubicin), bleomycin, vinblastine and dacarbazine
    BEACOPP which consists of bleomycin, etoposide, Adriamycin, cyclophosphamide, Oncovin (vincristine), procarbazine and prednisone
    COPP/ABVD which consists of cyclophosphamide, Oncovin, procarbazine, prednisone, Adriamycin, bleomycin, vinblastine and dacarbazine
    Stanford V which consists of Adriamycin, vinblastine, mechlorethamine, etoposide, vincristine, bleomycin and prednisone
    MOPP which consists of mechlorethamine, Oncovin, procarbazine and prednisone

    Second recurrence, Bone Marrow Transplant (BMT) The two most common types; Autolongous (Auto) transplant, harvesting stems cells from the patient and the second, Allogentic (Allo) transplant, using bone marrow from a donor, preferable a sibling. These are the two standard treatment regimens used all over North America for second recurrence. Alese’s doctors in California suggested a second BMT after her third reoccurrence and this was only because of the gap between recurrences. The closer the recurrence, the fewer options available, BMT carry a 50% success rate and survival rates diminish dramatically with every recurrence. At this point; we decided to pursue clinical trials. According to the U.S. News (2005) the three best cancer facilities in the country are:

    Memorial Sloan Kettering Cancer Center - New York City
    M.D. Anderson - Huston, Texas
    John Hopkins Hospital - Baltimore, Maryland

    We talked with all three facilities; Kathy and I felt Sloan Kettering offered Alese the most options. Alese’s first appointment at Sloan Kettering was November 2004; we went to her first appointment with one treatment option and left with five. As of September 2005, four additional treatment options became available and a fifth developmental drug was announced by Tanox in late December 2005.

    Recurrence
    The wider the gap between recurrences the better, many cancers, including HD, build resistance to chemotherapy drugs and essentially, the body can no longer fight off progression of the disease. This is the main reason Alese is participating in clinical trials, Doctors at Sloan Kettering felt the HD was becoming resistance to standard chemotherapy and thought that if they served the disease a “curve ball” by introducing a completely different treatment regimen, the HD would respond and growth would stop, or slow to the point of manageability. They told us upfront they could not cure her, but felt they could treat the HD as chronic disease, such as diabetes, emphysema or asthma. The goal for treating Alese has always been cure; however, advances in treatments show promise of manageability. Make no mistake, this is not holistic medicine, these are genetically engineered monoclonal antibodies and protein inhibitors developed by large pharmaceutical and biotech companies under the supervision of the FDA.

    Holistic Medicine
    I’ve seen too many people go down this road and families spend ten of thousands of dollars; they’re given empty promises without supporting scientific evidence. In every case, the outcome was life altering and the patient died.

    Communication
    Alese was 17 when she was initially diagnosed; we never thought the disease would come back; statistics for complete cure are upwards of 90%. When she had her second recurrence, one of her doctors told her she had 50/50 chance of surviving one year and every year thereafter being cancer free, her odds would increase. This is hard for anyone to hear, let alone a 17 year old kid, and until that point we had not discussed the possibility of dying. By force, it was a subject we discussed, but something we have not dwelled on; we push forward and look positive to her future. When Alese began participating in clinical trials we talked about all treatment options, there are no surprises and everything about the trial she’s participating in is discussed up front. If a trial does not work, like the MDX/CD-30 trial; we move on to the next treatment option. Alese participated in a trial called PDX, this drug was good and kept the HD in check, but the side effects were so radical that it negatively impacted her daily life and she opted out of the trial. As of this writing, she’s receiving low dose phase III regimen called GND chemotherapy, which has very few side effects. The option of “reaching in the chemical bag” was discussed months in advance. If your child is too young to understand all the ramifications of HD, exercise common sense and say nothing in front of them. Support them, love them and take the appropriate steps for stabilization or remission. If your child is older, and I’ve had at least three parents with children over 21 say this to me; “I don’t know if I should say anything to them, because I don’t want to over step my boundaries.” Hello… This is your child, throw your boundaries out the window, your child has recurrent cancer, reinstitute and exercise your parental authority, especially in a potential life altering scenario. If they don’t like it, tough, they’ll get over it. You’re still their parent and you’re there to look out for their best interest period.

    Hospital Stays
    Alese writes about this in her story, 275 people die daily because of hospital errors, which is equivalent to a 747 crashing every day. Someone from the family has to be the patients advocate, especially during hospital stays, 24/7. Every time a nurse or doctor comes in the room, we ask them what they’re doing, what they are giving her, etc. In a learning environment UCLA, Stanford, Sloan Kettering, a lot of Interns come in the room. Most of these future doctors are fresh out of medical school and they have no problem waking you up or disturbing you, even when it’s been a long night and the patient is finally resting. If I don’t recognize the doctor, I refuse their services, when they get insulted (and they always do) I remind them they’re neither an oncologist, nor Alese’s treating physician, and we’re not here to assist them complete their education at three o’clock in the morning. Maybe it sounds harsh, but I’m here to look after Alese’s interest, if it hurts their feelings, so be it. When Alese was in California, Kathy and I alternate12 hour shifts. Since she’s been in New York, whoever is with her, stays with her 24/7 until she’s released.

    Patient Advocates
    In the environment of a potential life threatening cancer, passivity has no place. I cannot express enough the importance of being a proactive voice for the patient.

    Bone Marrow Tests
    These procedures are done as part of the staging process and they’re highly painful. If the Doctor tells you they numb the area and there’s no pain, don’t believe it. Insist that they give a general anesthetic, anesthesiologist have a cocktail of drugs called MILK. For Alese, these drugs bare no after effects, no nausea, no throwing up. Its thirty minutes of lapsed time, she wakes up as though she was sleeping. Outside of a few days of soreness caused by the procedure, there’s no significant pain.

    Chemotherapy / Radiation
    While your child is receiving chemotherapy, do not give them vitamin supplements without the prior knowledge and approval your oncologist. Some vitamins can counteract the effects of a chemotherapy regimen. If the patient is going to receive radiation, be careful, this stuff has long lasting side effects. Exercise caution and be conscious of how many rads the body is being given. We’ve known people who have died from the radiation exposure years after the disease has been in remission. Get a second opinion.

    Roller Coaster
    This is a marathon, it’s not a sprint and this journey is filled with peaks and valleys. Over time, I’ve learned I have absolutely no control over this and I try not to allow the day to day events affect my daily life. Keyword: Try. I have many good days and few bad days, I’ve learned to take this in stride and realize that frustration and anxiety does not make this scenario any better or easier. I’ve had dozens of people say to me, “I don’t know how your family deals with all of this.” What? Are there other choices? The answer is ‘yes’, over the years, I’ve seen many parents cope differently to their child’s illness; some constantly cry; some have gone numb, some spoil the child unmercifully and others remain in denial. I judge none of them; this is a nightmare for any parent, no matter the child’s age.

    Nausea
    One of Alese doctors once told me the best way to go through chemotherapy is asleep. Just after he told me that, he went on vacation and Alese was scheduled to go into the hospital to receive a chemo (ICE) One of the other doctors from his group treated Alese during the stay and I told him to load her up with morphine, and he did. When her primary oncologist returned from vacation, he called me screaming, (no exaggeration) “When I told you the best way to go through chemotherapy was asleep, I did not mean it literally.” We spent the next ten minutes on the phone working through this issue and over the next several months Alese received several more rounds of chemo, on every occasion he agreed to keep her heavily sedated. My argument to him was that if this was your child would you rather see her unconscious or throwing up unmercifully? Other good nausea medications for outpatient use are Compazine, Zofran, Ativan and Benedryl.

    Social Workers
    In all sincerity, honesty and void of disrespect, I’m not sure what they do and I cannot define any redeeming value or service they offer a patient.

    Hair Loss
    The hardest thing for any girl or women is losing their hair. If you have a boy, it’s a little easier, many times all of his friends wind up shaving their heads and the child feels sense camaraderie, although it’s not easy, the impact is softened. But, I’ve never seen this happen with women or girls. I’ve talked to many women who have, or had cancer and they’ve all said that emotionally losing their hair was the hardest part. If you have a daughter, as soon as the hair is an inch long, get her hair extensions, it’s not that much money and it restores their femininity, along with a sense of normalcy.

    Negativity
    I don’t know why, but some people make negative statements in front of cancer patients and their families. I’ve come to three conclusions, they don’t know what to stay and they say something stupid; they’re ignorant or just plain evil. In any scenario, we’re not shy about requesting them to exercise discretion, and if it occurred thereafter, I’ve exiled them from access to our family. No person with cancer or their family needs anyone making unnecessary comments during the time of crisis.

    Spouses & Children
    There are a lot of people we have come in contact with that ended up separating or divorcing, one of Alese’s Doctors warned us about this. The Lord remains our rock, and throughout this journey we’ve become closer and have gained a deeper appreciation for one another. I no longer take our time as a couple for granted and we’re both more conscious of our limited time together. Both Shallyn and Mark (Alese’s brother and sister) have been unbelievably supportive and their actions of unconditional love and support they display speak volumes of their character and unending love for their sister. When I’m home; I go overboard to support their interests and outside activities, Shallyn plays club and college soccer and Mark rides motocross and plays golf. When I’m on the East Coast, I keep in touch with them by cell phone many times a day. They’re both awesome kids.

    Life Changes
    A lot people asked me if Alese has changed through the whole process. Yes! How can she not? She faced the unimaginable at a young age. Alese is uncannily discerning, and seems to hover at ten thousand feet when many are pushing the ceiling at five thousand. She reads people extremely well; she’s unwavering loyal and truly loves genuine people. At the same token, she’s verbally intolerant to those at the opposite end of the moral spectrum. This change became really evident after she almost died in October 2003, I mentioned something to her about this and her response was; “Life is way to short too waste time with people who are phony.” She’s just very, very honest, whether people like it or not.

    Enjoy Life
    It’s not what you do while you’re here on earth; it’s how much you do with the time your allotted. To me, having cancer at any age is a nightmare, but having cancer during youthful years robs a child of a lot of opportunities, it’s unjust. I’ve always felt that this is about Alese period; it’s not about our family or anyone else. With that in mind, I’ve never quite understood why the number one request the Make-A-Wish Foundation receives is a family vacation at Disney World? I just don’t get it? When Alese is receiving treatment, I want her to forget about as much negative crap as possible and I try to focus as much of her attention on the positive, rather then the reality of the moment. And, I’m happy that she’s done more things in her 21 years then most of us will ever do in our entire life. She’s posted a few things on this site; others events have involved people or things who’ve requested to remain anonymous and confidential, and we respect their wishes. Kathy and I set up events for her, sometimes they take months of planning, others have come together in days. We always allow the people involved total access to her oncologist, if they want verification; we have the two parties talk directly. If documentation and medical releases are required, her oncologists have permission to provide medical information. These events are for Alese, Kathy and I do not attend. It’s just Alese and a friend, or Alese and her boyfriend; a few times she’s taken her sister. Our joy comes from her telling us about her time and watching her excitement as she relives the moment. The fun part is that she never knew in advance, it’s was surprise and she finds out the day of the event. Once we told her the night before and she was so excited, she didn’t sleep. I should reiterate these events were only done while she’s receiving treatment and the purpose was to lift her spirits and encourage her to live life under the most challenging circumstances.

    Alese has defined herself in the face of adversity. She’s displayed courage, grace and dignity. Without question, she’s mentally and emotionally the toughest person I’ve ever met. She is wise beyond her 22 years. Fight 2 Win is not her motto, it’s her life. She is my hero.

    From My Mom ’s Perspective…

    Paul addressed many of medical issues relating to Alese's treatment, I'll add a few things, however, I wanted to address many of the areas in our lives we've face with relationship's, family and issues we've encountered along this journey. I hope you will find comfort knowing you're not alone in dealing with challenges we all face while taking care of a loved one with cancer.

    The Beginning
    I'll start with the first day I was told Alese had cancer. I came home from working my sons kindergarten class, and I walked through the front door, and The look on Paul's face told me something was wrong, he looked down at the floor and then looked up and said; "We didn't receive the news that we wanted to hear and they've diagnosed Alese with cancer, the doctor says she has Hodgkin's disease." The first thing that comes to everyone's mind when you hear the word cancer is death. I knew nothing about Hodgkin's disease; this was scary for all of us, especially Alese.

    Emotions In Check
    Although the first day was emotional for our family, and without question this was a very tear filled day. However, day two began with a new thought process and a new attitude. Alese needed our support and Paul and I agreed that we would not show any emotion in front her. We had to be there for her and we were going to make sure she did not have to be there for us. My focus as her mom is to support her, nurture her, care for her, and love her unconditionally 24/7. This is not to say we didn't break down, we have our moments of tears, but, they're done in each others arms or with my family and close friends. If the parents are emotional wreaks in front of the child, the child is going to feel as though they're carrying the parent and no child should carry that burden.

    Rethinking The Bigger Hammer
    Almost every chemical oncologist I've ever spoken with follows the bigger hammer philosophy when treating recurrent HD, the more aggressive the disease, the more aggressive the chemo regimen. When Alese had her third recurrence, we had to change our thought process; it was clear in my mind that chemotherapy was not working and our mission became finding doctors who knew of another way to treat this cancer. Without question, this is the most important thing I've learned from Dr. O'Connor at Sloan Kettering. Participating in clinical trials gave Alese other treatment options without the devastating side affects of chemotherapy. I'll live comfortably and happily with manageability; cure right now is not a necessity.

    Doctors, Hospital & The Process
    From the time I found out Alese had cancer, I felt as though my own world had stopped, but everyone else's keeps going. I felt as though Alese was put on a conveyor belt and I couldn't get her off, it seemed as though she was going down the assembly line of chemotherapy and I felt helpless as I watched this horrific nightmare. The environment of doctor's offices and hospitals can seem a bit overwhelming. At times, it seemed very impersonal, there was a lot of sitting and waiting for hours upon hours, and I felt we were just another number. I wanted to scream, "This is my daughter's life, and doesn't anyone realize how important this is." But, as I looked around the room, it became evident everyone in the office is feeling the same way, and every life there is just as important as Alese's. I learned a lot in those months and found that patience is a virtue and I learned early on that every patient must have an advocate. I have a loving sweet nature, but I found out that I also could speak up when the situation presented itself. There are times we need to have patience, but then there are other times that we need to step up and speak up. A hospital can be a very lonely scary place, if she was the one who had to suffer through painful procedures, than one of us was going to be next to her holding her hand and assuring her she was not alone. At times your loved one is too weak to defend themselves this is one of the reasons we never leave Alese alone in a hospital, ever. This allows her to get the proper rest she needs knowing there is someone always by her side. It also gave her great comfort and peace of mind. I believe being there for them helps them to cope better with all they must go through.

    Marriage
    Paul and I have changed through this experience, a doctor told us early on that many couples do not survive when faced with one of their children gets cancer, or die. We came together and we've experienced a depth and intimacy in our relationship that I cherish. Paul has a truly generous spirit, and a genuine heart. I give him the credit for giving Alese the positive outlook she has and the example he is to her. He is the most wonderful Father. Every moment God gives us on this earth is a blessing. Time has become such a precious commodity for us and we handle it with care, he is truly my best friend and I cherish him.

    My Other Children
    This is a balancing act and I have to say I'm becoming a better juggler. My children are my biggest gifts. It seems, that one of us is with Alese the other is taking care of the other two. We found planning special times with each one has helped them not to feel left out. We make sure that everything they want to share with us is important to listen to. We don't just tell them we show them how important they are to us. When I was growing up we never had a lot of material possessions, but I always knew how loved I was, not only by my parents but my brothers as well. This is something I will cherish and it's something I want my children to carry on with throughout their lifetime. My brother Dave once told me; "Kathy it is not always the words people will remember or the degrees you may have or how much money you have made, but what people will remember is how you made them feel." This is what I want my children to emulate.

    When People Say The Wrong Things I have a lot of grace on people who say the wrong things but mean well. I have said many things in my lifetime that I wished I had not said, but through this journey, hopefully I've learned what not to say. I find most people truly care and it's not their words so much as their actions that show genuine concern. If they've said the wrong thing, and I know there hearts are sincere in wanting to help you, then I embrace what they're trying to give and take that love, and hold it close to my heart. There are a few, who don't care and do not have good intent, this is really important that you keep those people far away from your child.

    Lessons Learned
    While walking this journey with Alese, I have had many hours to sit and reflect on many things. I have met a lot of amazing people along the way who have imparted so much wisdom. I began thinking of the many different kinds of pain that we go through throughout our lifetime. It is not just sickness and life threatening diseases alone that cause the "quiet despair" of life. A broken relationship can hurt more than a broken bone. Many a sick soul resides within a perfectly fit body. Although the problems we're facing can seem impossible at times to get through. Know that there is nothing you cannot conquer. I don't look at any other painful situations as being any easier to get through. Bottom line is life can be hard but it's what we do in those times that make all the difference. I found no easy, simplistic answers, and I will not offer any easy answers in a season of suffering. What I did find was the affirmation of the unequivocal love and sovereignty of God and the peace that results from embracing His ultimate purpose has brought me peace. I found if we are to approach life and have success we must embrace all the suffering we have gone through and be grateful for every lesson that comes from trials in our life. I'm grateful for everything I have been through they have molded me and made me the person I'm today. Hold onto those loved ones who embrace the beauty of your life through good and bad, and pray for the ones who don't know how to do that. We have a support around us with family and friends that is priceless. You do not need everyone's approval or love. The approval that I deem the most important is from my Lord and Savior and it is Him I have to answer to at the end of the day, not anyone else. Keeping this as a priority will keep your life in perspective.

    My Daughter
    Alese has turned a very negative scenario into something very beautiful. This website shares a small piece of who she is and how she has chosen to live her life. Her story of faith, hope and unending Fight 2 Win has touched thousands of lives across this country. I'm grateful, honored and blessed to call her my daughter.

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