Past Commodore Dave Brezina – 2015 Regatta Honored Hero

014Dave beat Squamous Cell cancer at the base of his tongue in 2001 and hoped he was done.  However, last August Dave had been experiencing fatigue and other symptoms for several months, but he was determined to compete in the Tartan Ten sailboat class North American Championship Regatta.  During the race, he had difficulty walking and had to be replaced on his boat for the remainder of competition.  After a trip to the ER, the loss of mobility was determined to be Paraneoplastic Myelitis, but tests also revealed a tumor in his abdomen.  This time the cancer was non-Hodgkin’s Lymphoma.
015Last August Dave supported the Leukemia Cup Regatta Campaign once again – this time as the Commodore of Chicago Corinthian Yacht Club, which graciously hosts the Leukemia Cup Poker Run.  He had been tired and experienced other symptoms for several months, but he was determined to compete in the Tartan Ten sailboat class North American Championship Regatta.  During the race, he had difficulty walking and had to be replaced on his boat for the remainder of competition.  After a trip to the ER, the loss of mobility was determined to be Paraneoplastic Myelitis, but tests also revealed a tumor in his abdomen.  This time the cancer was Non-Hodgkin’s Lymphoma.  Eighteen weeks of EPOCH chemotherapy reduced the tumor greatly, but there were still four weeks of radiation to endure.  Doctors are currently watching him closely to make sure the lymphoma does not return.  Dave found it ironic that that the donations he had made to LLS over the years would eventually become an investment in his own health!

You may call me a hero if it will help my brothers and sisters fighting cancer. – Dave Brezina

Doctors are currently watching Dave closely to make sure the lymphoma does not return. When asked to be our Honored Hero, he said, “I’m not a hero.  My son’s a hero (for) receiving a Bronze Star for Valor awarded by the US Marines.  My wife and daughter were with me every day for months getting me through my medical challenges.”  011

 

 

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Andy Lawless – 2015 Regatta Honored Hero

IMG_1157 When Andy was only seven weeks old his mom, Tess, noticed a spot on his leg. A few days later similar spots appeared on his arm. Tess was terrified it was cancer, while the doctor told her it was probably birth marks. Three weeks later Andy was covered with spots and the doctor referred the Lawless family to a dermatologist at Ann & Robert H. Lurie Children’s Hospital. The dermatologist did a biopsy on one of Andy’s lesions.  A week later Tess received a phone call confirming Andy’s diagnosis and her worst fear: acute myeloid leukemia.

My world shattered. – Tess Lawless

Over the next few weeks, Andy had several blood draws, more skin biopsies, bone marrow biopsies and aspirates. His case was unusual because his blood work always came back normal, and the pathologists didn’t initially find cancer in his bone marrow, only in his skin. After further testing, pathologists found trace amounts of leukemia cells in his bone marrow. The oncologist gave Andy the prognosis of a  50-60% chance of making it to his 5th birthday. He was enrolled in a clinical trial for four months for a “new” type of chemotherapy. He had numerous blood and platelet transfusions, countless amounts of antibiotics to prevent infections and other medications to alleviate side effects.  Andy eventually needed tube feeding as well.

Wherever Andy was I was.  We were in the hospital for three weeks of every month. – Andy’s mom

20150725_093232By Christmas Eve, Andy was healthy enough to come home! He was still very sickly, but at least the Lawless family were home for Christmas.  Since the end of treatment, Andy has had several medical appointments, mostly dealing with  side effects from chemotherapy— cardiology,  gastroenterology, dental, and more.  Most of Andy’s side effects have been resolved, however he takes medication for his heart because of the effects chemotherapy had on his heart function. Now Andy only needs to see the oncologist once every four months and the cardiologist once a year.  His teeth were also weakened by the treatment so he has to see the dentist every other month. His pediatrician is happy with his development he continues to meet development milestones and is growing and gaining  weight.

Andy is a two-year-old boy whose goal is to have fun and make people laugh. He loves playing with cars, trucks and blocks as well as chasing an wrestling his sister.

Ellie, Tess, Tom, and Andy

Ellie, Tess, Tom, and Andy

Tips for the Cancer Caregiver by Sarah Mowat

Coping Tips for Cancer Caregivers. The evening before my first chemo session, I remember lying facing my husband and future Caregiver, Nick, in the dark, not able to sleep.  I had tears running down my face; Nick wiped the tears from my cheeks with his thumb, accidently poking me in my eye whilst telling me it was Me and Nickgoing to be ok.  They felt like hollow words but the irony of the eye poking incident made us laugh and pulled me out of my dark place. That was the start of his role as cancer caregiver and mine as patient. There are some fantastic general tips for the cancer caregiver on how to support a cancer patient available online, so the tips below relate more on how to cope with becoming a cancer caregiver.  I was sometimes a good, happy cancer patient and sometimes an unhappy, cantankerous one.  The tips below relate to our personal experience of finding our way through the maze that is cancer diagnosis, treatment and survival.

  1. Play your strengths and seek help for your weaknesses – Nick could always make me laugh when I was feeling glum but was a nightmare at keeping on top of the wall planner schedule. His Mum got on board and whilst she was there, life got a lot more organized.
  2. Create a family wall planner – I tried to link our personal calendars on our phones, but after several ‘doh’ moments, resorted to a large wall planner which became increasingly artistic with highlighted chemo days, appointments, friend dates, travel/work info, childcare, birthdays etc. Plus there is something very satisfying in scribbling out the chemo days as they pass.New Picture (24)
  3. Educate yourself on the disease your loved one is facing using trustworthy resources – the LLS website along with a few others were our starting point. It will help you become an advocate for your loved one. My family and close friends all read through one particularly clear and comfortably concise publication on all things Hodgkin – I found it helpful and very sweet to see everyone making an effort to understand what I was going through which in turn meant they were better able to help me.
  4. Plan Fun and go a little Wild – my cancer diagnosis gave me a lust for life, I wanted to soak in every moment and make as many more moments and memories as I possibly could. My family humored my fall bucket list, which I pinned up on the wall. Nick raised his eyebrow but never grumbled when I took him and our daughters out on expeditions to jump in every puddle on a mini hike pretending to be the big bad mouse from The Gruffalo, fly giant monkey kites and feed the ducks whilst eating almond croissants dressed like eskimos. We’d always plan something on the good days before my next session of chemo. On the not so good days we’d watch movies under a blanket, listen to music or play a board game (we are one wild couple, can you tell?).New Picture (27)
  5. Keep a journal – Write how you feel down, how your loved one feels as well as note any symptoms they mention suffering from. It’s therapeutic but will also help remind you both of any problems that should be mentioned at the Doctor visits. After a while you may also notice a pattern to how your loved one feels after certain treatments and can plan for them. The day after my neulasta shot I would ache in my shoulders and I’d feel my most tired. As it seemed somewhat of a minor complaint I just got on with it but my mother-in-law looked into it and started running me a warm bubble bath the evening. It felt amazing and I used enough bubbles to make our entire house smell like a French lavender farm.
  6. Communicate – be honest (somewhat) and let people know what you are feeling. It is great to be positive but in a weird way, it’s sometimes nice to know you’re not the only one worried or struggling. I joked with Nick that if I didn’t make it, he could hire a hot (but very lovely role model) nanny to help care for our girls. At one point Nick was so blasé and happy that I began to ponder whether I was being a little too generous. I also had my moments of feeling sorry for myself and it was refreshing for someone to tell me to ‘stop being a grump’. Emotions run high with the patient and caregivers, I think there will always be days where you are all walking on egg shells. There will be days where you feel unappreciated and there will perhaps be days where the cancer patient feels like they are struggling alone despite being surrounded by caregivers. I didn’t always notice or appreciate all the housework that was magically kept on top of, but somedays my caregivers probably didn’t appreciate that behind my smiles chasing after the girls, I’d be consumed planning places where I could sit for 5 minutes and rest my exhausted, stubborn self.  I had park preferences based on the seating options but I never told anyone out of pride but would inevitably end the day a lot less appreciative and grumpy. It’s never easy but communicating as much as possible will make the empathy flow a little easier on both sides.New Picture (26)
  7. Don’t forget your own Health & Happiness – keep up with your own health appointments, squeeze in time for exercise, hobbies, socializing and de-stressing. It’s easy for everyone to begin to focus on the patient and immediate priorities surrounding that as there’s a sense of urgency around a diagnosis but it’s not sustainable for the caregivers in the long term. Nick favored a whiskey, Game of Thrones marathon followed by a good sleep. Escapism is essential.
  8. Check out the cancer resource centers near you. They have some fantastic programs for families, patients and caregivers. When I was first diagnosed a neighbor kindly showed me round my local center and it’s like a little sanctuary with classes, yoga, art, support groups and wonderful counselors.  I had to feel ready before exploring this sanctuary and it took me a while, much to my families disdain. Don’t worry if you or your loved one don’t feel like immediately jumping into attending programs but sign up for newsletters and program updates. It’s there for you when you’re ready.New Picture (28)
  9. Seek help to tackle the financial hurdles & insurance puzzles – I found navigating this very stressful as a rooky. Nick and I would spend hours on hold to various people from the insurance company trying to de-code the trees worth of paperwork that would arrive at our door every few days. My tips — tackle telephone calls on speakerphone and take notes, jotting down the name of the person you speak to along with a reference number for each phone call. The calls tended to drag on so we would try to prepare for it with coffee/tea and a treat. I honestly found this the hardest aspect of my diagnosis as I saw myself as a financial burden on my family. I cried a lot and probably didn’t talk about it enough. I’d highly recommend seeking help from an organized, trusted friend or family member and speaking to a volunteer from LLS to talk you through their Financial Assistance Programs, check them out here https:/www.lls.org/support/financial-support
  10. Love a lot – tell your loved one that you love them and that you’re proud. A cuddle and a compliment can conquer all. I’m fond of this quote from Mother Theresa,

“It is not how much you do, but how much love you put in the doing.”